A Pioneering New Way To Face Up To Dyslexia

March 22, 2010

In a Same Difference first, this post is part of two debates. First, Is Dyslexia A DisAbility?, and second, Inclusion Rules!.

I didn’t write this, I’m not writing this. Amy is writing this. Say: “Hello, Amy.” I speak into Amy’s crooked ear, and she types on my behalf. Amy can tell the difference between a lower-case “b” and a “d” with one eye closed, after three gins. She minds her ps and qs, and she’ll mind mine if I ask her. Amy is comfortable with all the many and subtle ways of “ough”. Words are her open book, as simple as ACB. So she writes with an assured dexterity, without even looking down. But what you hear, the timbre, the cadence of the clusters and chicanes, those are mine. The voice that is whispering into your shell-like is mine. And that is a great and subtle alchemy. These squiggles, these secretive, revealing spoors are only desiccated sounds — the dried minestrone of speech. It’s the voice that matters, warm from the mouth. Not these cold, black letters.

The first alphabet with vowels is Greek, 800 years before Christ. The word comes from alpha and beta, plagiarised from the Phoenicians: the pictograms for “ox” and “house”. A stable. The alphabet is a stable for words, for ideas, declarations, statements, jokes, orders, denials, rhymes, reasons, lies and last testaments. And you know what else stables are full of.

It was suggested that we should print this the way I write it, just so you could see, get some idea of the mess, the infantilely random alphabetti muesli of my 55-year-old writing. You’d get a kick out of it. No, it would really amuse you. People still laugh at me on paper: “Oh my god, is that real? Is that how you write? You’ve got to be joking.” I’m not immune, but I’ve grown thick-skinned, if a little defensive. After all the awards, the pats on the back, the gimpy words that put the kids through school and put a chicken in the pot, you can scoff all you like. You can scoff for free. I get paid for these words, and I gave up caring when I discovered the rest of you spell phonetic with a “ph”.

There are better things to do on a miserably wet night than to come to a charmless church hall. Inside is the familiar setup of self-help: the table with pamphlets and privately published books of obsession, the industrial teapot, the semicircle of plastic chairs, the posters of concern and encouragement. There are perhaps 20 people here, talking in little groups, with the familiarity of a cause that is also a social life. A pair of women see me and beam. They are the vestal stewards of church halls everywhere: solid, energetic, intimidating. “Ah, there you are!” says one. “We’re so pleased you could come. Have you got a cup of tea?” “Have a biscuit,” says the other, producing a tin of chocolate ones. There’s a plate of plain digestives. “These are the VIP biscuits,” she whispers. This is probably the only hall where I’m a VIP: the monthly get-together of the Bexley, Bromley, Greenwich and Lewisham Dyslexia Association (founded 1974). And I am a dyslexic. A dyslexic who writes a lot — 1,500 words, give or take, a day. And if I let the spellchecker get its bureaucratic little pince-nez within squinting distance of any of them, it would say 1,000 are spelt wrongly. I am a grammar cripple, a functioning illiterate. Literally. I write for a living and, like blind mountaineers and limbless golfers, I am a straw to be clutched at by these quietly desperate and bravely determined people whose lives and dreams for their children have been overwhelmed by 26 characters in search of an orthodoxy.

The meeting gets under way. Four experts — an expert being someone who knows more than you do — sit in front of us: a teacher, a helper, a student and a learning-difficulties coach. The parents, mostly mothers, their faces taut with worry and incomprehension, listen intently. One or two have brought their children, who sit with their heads down, drawing, trying to be invisible. I’m with them. The questions swiftly become long, anguished stories of uncaring schools, intransigent authorities, lax teachers, jobsworth governors and thwarted children. At every hardship and symptom, the experts and regulars exchange knowing, conspiratorial grins and raised eyebrows. A desperate mother, twisting her fingers into knots, says the social services are trying to have her committed as an over-anxious parent. There’s a chance they’ll take her child into care. The room shakes its head and tuts with the commiseration of the vindicated paranoid.

After too long, the meeting closes. It has answered all the questions with more questions. Doors have opened to reveal corridors filled with more doors. It has helped only to concern the concerned, whose anxieties mostly revolve around statements. Children with learning difficulties need to be statemented — that is, given a series of tests by a professional that take a long time and are, if not arbitrary, then not altogether precise, a bit like a Cosmo quiz for the semiliterate. They are useful, and they are craved by the parents of children who are failing.

A statement imposes a statutory obligation to give the child special attention. Education authorities and school boards don’t want to do this because they don’t have any money. They do have time. Time is everything. Children grow older, grow out of their shoes and, with luck, out of their schools. Everyone agrees that the sooner you treat dyslexia the better — so they connive to put off statementing. They don’t return phone calls, they cancel appointments, lose forms and files, hoping the problem will go to another catchment area, another school, and probably the private sector. They’re not uncaring or cruel. They know that the help they can give a dyslexic child will probably amount to no more than an unpaid, untrained teaching assistant doing a bit of nursery-rhyme reading a couple of afternoons a week. Everybody understands that the urban comprehensive system isn’t going to step up to the needs of a dyslexic child. Still, most parents have no choice but to make bigger and bigger nuisances of themselves. The children find they do have a choice: they can check out. They can turn up, but they can turn off. They can be in the room but not present. They can get their self-worth by being disruptive and too clever by half. They stop offering up their self-confidence to the blackboard to be squashed and mocked.

I hover by the book stand. There’s a list of famous dyslexics — Lee Ryan, Tommy Hilfiger, Benjamin Zephaniah, Steve Redgrave, Richard Branson, Zoë Wanamaker, Eddie Izzard, Toyah Willcox, Albert Einstein, Jackie Stewart. It sounds like a really horrible reality-TV show. I could make a starrier list to advertise consumption or syphilis. “We’re a bit in two minds about Einstein,” says the book monitor. “He was probably autistic.”

I buy a pamphlet called The Perplexed Parent’s Guide to Special Needs. It is £8. It contains a glossary, four pages of jargon, 87 learning abbreviations. So much easier to tell a parent their child has PMLD than “profound and multiple learning difficulties”. The well-meaning ladies ask if I’ll write for the dyslexic newsletter. I make my excuses. On the way out I am approached by a mother with her daughter, who’s had her head bent over a notebook. She must be seven or eight. Her drawings are clever and accomplished, fluent doodles of fantasy things, things that aren’t in this room. We smile at each other. “So good at art,” says one of the vestal ladies. “Typical dyslexic — so much creativity.”

Maybe I’m too hard on these people, but I’ve been avoiding meetings like this all my life. I’ve been avoiding writing this article for as long as I’ve been writing. I was diagnosed dyslexic when I was at a state junior school in north London, bottom of the class at pretty much everything except the nature table. We were given IQ tests, and apparently mine was disproportionately higher than my academic achievement. This was the way dyslexia was diagnosed in the 1960s. Although not a new disease — it was originally noted in the 19th century — it was new to the newly comprehensive school system, and a solid majority of teachers imagined it was either a dubious American import or a euphemism made up by middle-class parents for their dim sprogs. There was certainly no provision for it other than extra homework, which I got and resented, then lost and forgot, dropped in puddles, used as goalposts, fed to the neighbours’ dog. So I was sent to a boarding school, St Christopher’s, in Letchworth. They said they not only understood dyslexia, but could sensitively help.

At my interview the headmaster asked me to read from the paper — The Guardian, naturally. The Commonwealth Conference was on in London. The first paragraph was an exotic list of African and Asian names. I fell at every one. He beamed. Seven years later, as he shook my hand and I left without a meaningful or useful qualification, he wished me good luck without conviction. The careers adviser had suggested a career in hairdressing. “I’m sure you’ll talk your way into something,” said the headmaster. “I don’t think we’ve ever had a pupil who’s spent as much time doing special extra study on Saturdays.” And he laughed, and so did I. Neither of us meant it. It was only afterwards that I wondered if perhaps, after so many years of punishing my inability to understand, they might have thought of some alternative to taking away the only morning I had to myself.

In retrospect there was a prophetic encounter. I loved history. It was taught by a malevolent and bitter man who always gave me low marks for the work I struggled over at the expense of every other subject. One day I went to him in tears and said I thought my history was better than he gave me credit for. He said he thought my history was very good, but my writing was appalling, and he marked me as an examiner would: “You have a problem with your writing, Gill.” And I thought, actually, no I don’t. You have the problem with my writing. To me it makes perfect sense. And I pretty much decided then and there always to make my dyslexia someone else’s problem.

There was, though, the “one” teacher. The one that, if we’re lucky, we all manage to find. He taught English. Peter Scupham. He didn’t teach me how to write, he didn’t do phonics or useful tricks to distinguish endings; he taught me how to read. He didn’t even do that, really. He just showed me how to read. He read all the time — often out loud. He would come to our dormitory late at night and read MR James’s ghost stories by the light of the full moon. He deconstructed Blake. The Sick Rose was the first poem I ever learnt by heart. I read very slowly, but I forget very little. And it doesn’t matter — books aren’t a race. A book doesn’t melt or go off. The author’s still dead, the words still live. Peter Scupham showed me the breadth of what was possible. It wasn’t Dead Poets Society or Helen Keller, it was just going to the shelf. I found him very early one morning sitting on the floor of the English department, ripping up dozens of copies of Shakespeare. He looked up without surprise and said: “You’ve got to show them who’s boss.”

I was never going to make university or poly. I stumbled into art school via the labour exchange, manual and menial work: shops, warehouses, building sites, gardens, kitchens, waiting, nannying, modelling. And I did five years at Saint Martin’s, then the Slade, where I took my art-history exams with a dip pen. I cut my own quills and wrote with an elegantly illiterate, romantic scrawl. A lot of dyslexics end up in the art room or the drama department. Along with the worry of perceived dimness, there is a parallel and concomitant assumption among mothers that dyslexics are artistic. As amputees grow stronger in their remaining limbs, so children with deficient spelling will develop a heightened aesthetic, have natural affinity to line and colour, bias-cutting and spinning clay. In the church hall there’d been a lot of knowing smiles when I said I’d been at art school. “Of course, we’re all artistic, aren’t we?” said the woman who claimed she hadn’t discovered her inner dyslexia until after she’d completed her doctorate, and was wistfully still trying to uncover her innate creativity. I stayed with art until I was nearly 40. I got quite good at drawing. But I’d done it for 25 years, so I should have been competent. There is no proof that dyslexia makes you any more culturally sensitive or artistically dexterous than people who can spell. We end up holding brushes instead of pens because it’s where we find some self-confidence. I don’t regret the art, but when I finally did sit down to write, oh my God, it was like coming home. This is what I’d been trying to say with chiaroscuro and perspective. Why didn’t I ever think of words? I was amazed at how easy writing is if you take away spelling and grammar. If you just say it.

Julian Elliott is a researcher into special needs, a teacher and an expert on dyslexia. Or, rather, he would be if he thought it existed. But last year he caused a lot of asterisks to be inserted into exclamations by questioning the very existence of dyslexia. I called him: I was rather looking forward to a fight. After all these years to discover that I’d been suffering from some imaginary disease, that I was just dim and backward all along. Happily, Professor Elliott’s own written style is as wooden as Pinocchio’s best-man speech. It is what’s technically known as “academic remedial”. Less fortunately, within three minutes I agreed with almost everything he said. Far from being a chalk-dust-and-elbow-patches grammarian, he’s a liberal, sensitive soul.

His point is that dyslexia the label has become a meaningless catch-all. So many symptoms and conditions are attributed to it: word blindness, innumeracy, short-term-memory loss, low self-confidence, truncated attention and untidiness, sensitivity to light, poor hand-eye co-ordination, inability to tell left from right, and various choice incapacities from the lighter end of the autistic spectrum. This is no longer a medical condition, it’s a social one. He emphasises again that there is no link between IQ and dyslexia. We are not innately smarter, nor is there any provable link with artistic talent, theatricality or interior design. On the other hand, being a brilliant speller isn’t an indicator of high IQ either, nor is reading a lot. But still, there is a huge weight of parental pressure behind the acceptance of dyslexia as a cause for special treatment and an indicator of aesthetic sensitivity.

Elliott does not deny that some children have difficulty reading and writing, but he says that the difficulty simply falls into the general bucket of special needs. The treatments for dyslexia and for other learning difficulties are identical, and if the cure is the same, so, possibly, is the condition. But there is consternation at the thought of disbanding the dyslexics’ club, not only from parents but from a host of commercially interested schools and experts. There is a lucrative dyslexia industry. Where the state system has been unable and unwilling to offer help, it has colluded with the private sector, all too happy to offer a service and to exploit the worries and fears of parents. So now there are legions of specialists and gurus whose cards mothers exchange at school gates with a desperate trust. Teachers sell preparatory cures, from coloured cellophane to gymnastics to computer programs. A devoted, sympathetic department geared to dyslexia is now one of the best selling points of a private education.

I mentioned to Elliott that I have a son who is dyslexic in exactly the same way as I am, with pretty much the same IQ I had at his age. “Ah, yes,” he says, “there does seem to be a genetic link, particularly between fathers and sons.”

I asked Ali’s permission before mentioning him here. He said it was fine, as long as I didn’t make him look like an illiterate poster boy. He’s now 17 and struggling with exams. The provision for dyslexics is almost exactly the same as it was when I was at school — more work, extra reading, extra writing, one-to-ones with a woman with ethnic jewellery who speaks in a slow, loud voice.

Fairley House is a school that specialises in dyslexia and its associated learning difficulties. This is the gold standard for specialist help, and it needs to be: it’s not cheap. They take children at the end of primary school to help them make the jump into secondary education. This is the great nightmare for parents; the competition for big school, both public and private, is fierce. Fairley House is a bright and jolly place in Pimlico, named for Gordon Hamilton-Fairley, the oncologist murdered by the IRA. I remember hearing the bomb that killed him. The school is noisy and energetic. Every wall, door and ceiling is covered in information — pictures, mobiles, labels. It’s like being inside a hyperactive 13-year-old’s scrapbook, a great, tie-dyed stampede of spangly encouragement and useful rubrics.

The headmistress might have stepped off one of her own walls, a lady with Day-Glo energy of the sort that seems to exist only in education and the more charismatic fundamentalist churches. She bobs down the school corridor like a cork in a millrace of children, shouting encouragement and cosy admonishments with a pantomime zeal. She has assigned me to shadow an attractive and winning lad called Zinzan. We go to his maths class with Millie, George and Lewis, taught by Mr Taylor, who’s been bitten by the same dog that got the headmistress. We’re learning percentages using packets of sweets. They try to teach everything with a practical example or a stick-in-the-head image; they learn pi using real pies. I sit on the little chair behind the desk, and the oddest thing begins to happen: I can feel myself regressing, the panic begins to constrict my chest. I can’t follow what Mr Taylor is saying. I don’t understand.

Millie leans across and helps me, not as a politeness to a grown-up who’s older than her dad, but with the fellowship of the impaired; another word-blind, number-paralysed school sufferer. It all rushes back over me: everything falling off my brain, like hearing through double glazing, the fog of incomprehension, the panic of being left behind. I’d completely forgotten the loneliness of classrooms where it all makes sense to everyone else. I look down at the page and my handwriting belongs to a child. I get it all wrong. “Never mind,” says Millie. No, never mind.

This is the most salutary of lessons. I had utterly buried this feeling: being here in this place. To fail with the kindness of professionals willing you on, egging you to understand, just to grasp the simplest corner of a concept that is forever opaque and ghostly. I still can’t do long division, or short division. I have no idea how grammar works. I can’t name the parts of a sentence. And, do you know the weirdest thing? If I were Chinese I wouldn’t have any of this. It seems there is no pictogram for dyslexia. If I were being taught in Finnish, it’s unlikely I’d be dyslexic. This is an overwhelmingly English condition. It’s the language, stupid, our irrational, fraught and contrary written tongue, that breeds misconceptions and misunderstandings that some of us never get into our thick heads. We can’t deal the memory cards, the exceptions to rules, the little charming eccentricities.

English was only recently regulated and systematised, when public schools had to turn out a large civil service and the mercantile class of clerks who all needed examining and filing. Before then, English was firstly a declaimed, sung, spoken, hot language. Not the chilly, starched memo-for-your-files, cc’d written one. But there’s no going back on it. It won’t return to the glorious free-for-all, extempore, idiosyncratic, phonic whoop of the 17th century. This is the way it is. And school’s currency is forever going to be words and numbers. If you can’t collect them and order them, it doesn’t matter how many sweets you count or pies you make or colourful drawings or pasta pictures. You are never going to be rich here. And we just have to live with that. Get on with the rest of our lives. If you offered most parents, indeed most dyslexics, the opportunity to spell like a Scrabble champion but that the price would be ugliness, they’d never take it. And anyway, how much do the rest of you remember about schoolwork?

The galvanising headmistress asked me if I’d talk to a few of the children about my experience with dyslexia. Of course, I said, through a pasty grin. She led me into assembly. You want me to take assembly? “Just a few words. They’re all very excited you’re here.” How long shall I talk? “Oh, 20 or 30 minutes, then questions.” I stood in front of this sea of blameless little faces, knowing that behind each of them there was already a room full of low esteem, full of catalogues of failure, a great weight of parental concern, and I wondered again at the horrible obstacle course we make of other people’s childhoods after we’ve f***ed up our own. And I caught sight of Zinzan, and I felt the anger, the hot fury for the wasted, tearful, silently worried, failed years of school, and I had a Spartacus moment. I started talking, rather too loudly. I told them this was their language, this English, this most marvellous and expressive cloak of meaning and imagination. This great, exclamatory, illuminating song, it belonged to anyone who found it in their mouths. There was no wrong way to say it, or write it, the language couldn’t be compelled or herded, it couldn’t be tonsured or pruned, pollarded or plaited, it was as hard as oaths and as subtle as rhyme. It couldn’t be forced or bullied or policed by academics; it wasn’t owned by those with flat accents; nobody had the right to tell them how to use it or what to say. There are no rules and nobody speaks incorrectly, because there is no correctly: no high court of syntax. And while everyone can speak with the language, nobody speaks for the language. Not grammars, not dictionaries. They just run along behind, picking up discarded usages. This English doesn’t belong to examiners or teachers. All of you already own the greatest gift, the highest degree this country can bestow. It’s on the tip of your tongue.

And then I caught sight of myself, standing like a declamatory ticktack man, bellowing like a costermonger, and I stopped and stared at the faces staring at me with expressions of utter, dyslexic incomprehension. From the back of the room, a teacher coughed.

Famed dyslexics

Leonardo da Vinci and Albert Einstein are both believed to have been dyslexic (some suggest that Einstein was in fact autistic). Yet these great minds led the Renaissance and revolutionised physics respectively. The three-time F1 champion Jackie Stewart wasn’t diagnosed as a dyslexic until he was 42; he has confessed that without motor racing his frustration with the written word might have driven him to crime. As a child Keira Knightley also found reading scripts ‘excruciating’. ‘I was — and still am — dyslexic. My mother told me if I came to her every day with a book in my hand and a smile on my face I’d get an agent.’

Eddie Izzard attributes his surreal material to his ability to make ‘sideways connections’ which he says is down to his dyslexia. The billionaire Richard Branson believes that dyslexia actually helps him: ‘I assume everyone thinks like I do, so I say what I mean clearly and simply and cut out the business waffle.’ Toyah Willcox suffered at school and failed nine O-levels. Despite this, she has found a positive side. ‘Those with dyslexia tend to excel at something: for me that was acting. So it can prove to be an extraordinary gift’

Playing Cricket With A DisAbility

March 21, 2010

by samedifference1

Cricket is one of my favourite sports. To watch, that is, because my DisAbility means I can’t play many sports. But, for anyone who wants to give DisAbility cricket a try, here’s some information I found that might be useful.

Some Tube Stations To Become Accessible In Time For 2012 Olympics

March 20, 2010

by samedifference1

Slough railway station is to receive a £2.5m upgrade to give disabled people better access for the 2012 Olympics.

Wembley and Hackney stations will also get funding to make them “step-free” by the time the Games start in London.

Thousands of spectators are expected to travel through Slough on their way to boating events at Eton Dorney Lake.

Work on all three stations is due to start in 2011 and be completed by 2012, in time for the Olympic Games opening ceremony.

Transport minister Chris Mole said: “Travellers will continue to benefit from better access at these stations for many years after the Olympics.”

This is good news and will mean real progress for many DisAbled travellers… if the government is able to actually carry out these plans. I hope they are.

The Same Difference Theme Tune

March 19, 2010

by samedifference1

Vodpod videos no longer available.

more about “YouTube – Don’t Laugh at Me – Mark Wi…“, posted with vodpod

I must thank Liberal Conspiracy for informing me that blogs are starting to have theme tunes.What a great idea!

So, for some Friday night fun, the Same Difference theme tune is posted above. I chose it because… well… it’s one of my favourite songs. I think it fits in really well with what this blog is all about. It’s even translated into American Sign Language for those who can’t hear. Enjoy!

Another Step Forward- Charity Of The Month

March 19, 2010

by samedifference1

Dear Readers

There are so many great charities out there, doing such wonderful work for DisAbled people. But, as most of you have connections to DisAbility yourselves, you already know that, don’t you?

The thing is, I’ve had an idea. As you probably know, you can donate to the very good cause of, erm, my moneybox, if you wish to, by clicking the ‘Donate’ button on the Home page of this site.

Well, from today onwards I have decided that exactly half of any money I am lucky enough to make through blogging will be donated to a disability related charity. And… you guessed it… we’ll decide on the charity at the end of every month.

I hope that this will be another step forward for Same Difference.

Please send your suggestions for a ‘Charity of the Month’ to me on samedifferenceone@hotmail.co.uk or leave them in the comments below.

Thank you

Best wishes

Samedifference1

BBC News – Prince Harry backs wounded servicemen’s North Pole trek

March 19, 2010

by samedifference1

Vodpod videos no longer available.

more about “BBC News – Prince Harry backs wounded…“, posted with vodpod

Details of the first unaided trek to the North Pole by disabled servicemen are to be announced by Prince Harry.

The royal, who is patron of the Walking With the Wounded charity organising the four-week trek, will launch the event at The Rifles Club in west London.

The amputees, who lost limbs in the line of duty, will try to reach the geographic North Pole from Siberia.

They will haul heavy sledges over 300 miles (483km) across the frozen Arctic Ocean in temperatures down to -50C.

Organisers say next year’s trek will raise money to help rehabilitate wounded service personnel back into the workplace.

“These guys have such extraordinary courage and determination… we felt doing something extraordinary like this would show these guys are extraordinary people,” said expedition leader Ed Parker.

‘Tenacity and courage’

Expert guides, including adventurers Henry Cookson and Inge Solheim, will accompany the amputees through tough terrain and hazards, including aggressive polar bears.

Mr Solheim said the 15-hour days and extreme cold would be two of the main challenges.

BBC security correspondent Frank Gardner said candidates are still being whittled down for the record attempt in April next year.

Walking With The Wounded promises to be remarkable. I salute the team walking to the North Pole in early 2011 and I urge the public to get behind them

Prince Harry

He said those on the final shortlist will undertake their first Arctic ice training in May.

Rob Copsey is one of the four finalists – from which two will be picked – hoping to participate in the expedition.

The former serviceman, who lost his right leg below the knee in an anti-personnel mine during a humanitarian mission in Rwanda in 1994, has already completed three marathons.

“I set myself a challenge early on after losing my leg, I wanted to prove to my friends and family that I was ok.

“Anybody can do it, half the battle is in your head and the other half is the physical side – you can overcome both, you just need to plan and be determined,” he said.

The 25-year-old prince said: “This polar adventure will exemplify the tenacity and courage of those who serve in uniform.

“Walking With The Wounded promises to be remarkable. I salute the team walking to the North Pole in early 2011 and I urge the public to get behind them.”

Harry, who has served in Afghanistan, has been training to become a pilot with the Army Air Corps for more than a year.

Disability Sport Gets £3.5M Boost

March 19, 2010

by samedifference1

Disability Sport is to receive £3.5m as part of the government’s plan to change the lives of the 10 million disabled people in the UK.

Tessa Jowell MP, minister for the Olympics and Paralympics, today launched the Disability Legacy Plan, an ambitious strategy to use the 2012 games as a springboard to integrate disabled people more fully into society.

The intention is to get more disabled people playing sport, to improve transport systems, provide better employment opportunities for the disabled and change attitudes, aided in part by Channel 4’s coverage of the Paralympics.

Jonathan Shaw MP, the minister for disabled people called it the government’s “vision of disability equality by 2025”.

Tessa Jowell MP told Channel 4 News: “The Olympics will affect the lives of 10 million disabled people, who will be more included in the life of Britain and Britain will be the better for it.”

She added: “I don’t think you can’t possibly describe the power of the Paralympics unless you’ve actually watched paralympic sport and many of the sports that people don’t know anything about which I think will become cult viewing when the time comes.”

The Disability Legacy Plan was launched at the Laburnam Boat Club in Hackney, east London with ministers, paralympians and disabled canoeists in attendance. “Paddleability”, Sport England’s drive to get more disabled people into canoes, has seen disabled participation double in a year.

Disabled people can be put off by the initial challenge of getting involved in a sport.

At Laburnam, they’ve attracted disabled canoeists by offering what they call a “half way house”, providing separate courses to get people familiar and comfortable at the club before introducing them to fully-integrated events.

Channel 4 News met players at a London Wheelchair Rugby Club training session in Stanmore, north London.

Many of the team are paralympians who represented Britain in Beijing, where they finished fourth. They say, with the home crowd behind them in 2012, they intend to finish on the podium.

Almost none started life in a wheelchair; car crashes, accidents, even rugby injuries put them there. Sport has given them, they say, a new lease of life. They’ve chosen an intense game.

The rules are very different from rugby union. Each team has four players competing at any one time with unlimited subbing through a match. All are given points based on their disability, the lower your points, the more disabilities you have, and the number of points a team on the court has can’t add up to more than eight.

It’s played in bespoke wheelchairs, with the constant sound of loud “contact” as the chairs are skilfully crashed into each other – that’s a tackle, as Steve Palmer, Paralympian Rugby vice captain, Beijing told Channel 4 News: “if you want the ball, you just smash the hell out of someone. Chair contact is fine. So if you hit someone with the front of your chair, knock them out and they’re on the floor, that’s absolutely fine, it’s all legal.”

Andy Barrow, captain of the Paralympian Wheelchair Rugby squad in Beijing, explained how the sport has given him a life and a career he’d never have had. “I would never have been able to play for England if I hadn’t been in a wheelchair”.

He wants other people with disabilities to gain from sport too: “We’re not just people in wheelchairs “having a go”, we’re athletes who happen to be disabled…however, we do need that grassroots, we do need to have people so they can just “have a go” in whatever sport, and your disability should not be a barrier.”

Save Sure Start!

March 18, 2010

by samedifference1

The Tories are planning to cut Sure Start, the childcare centre scheme started by Labour in 2002, for all except the poorest families.

Sure Start centres have been very useful for DisAbled children and their parents. As Shamik Das points out on Left Foot Forward:

In the centres visited, children with early learning difficulties/and or disabilities were well provided for, with good early interventions and prompt referrals;
Children’s centre teachers, speech and language therapists and day-care staff were successfully improving the quality of day-care provision in the centres visited.

I’m sure all parents of DisAbled children agree that the early years are the most important when it comes to diagnosis and appropriate treatment. Caught early enough, even the most serious of DisAbilities can be significantly improved, and sometimes even cured. The early years are also the time when our parents need more support than ever, as this is when they are trying to learn about and understand their child’s disability, and to come to terms with very natural feelings of sadness, pain, fear and confusion at having a disabled child. And everyone knows that you don’t have to have a low income to have a disabled child. The Sure Start scheme is helping the families who need help the most, when they need help the most.

That’s why Same Difference fully supports the Save Our Sure Start! campaign that is being run by the Labour Party. I strongly encourage those of you living in the UK to do the same. Please click here to sign up to the campaign and become a fan of it on Facebook.

And if any of you are parents of young DisAbled children who have used a Sure Start centre, please feel free to share your experiences in the comments below. The best will be posted on the campaign page. Thank you.

Brain Stimulation ‘A Promising Therapy’ For Epilepsy

March 18, 2010

by samedifference1

Artwork based on what a patient says an epileptic seizure feels like

Patients in the study had electrodes implanted in their brains

Deep brain stimulation is a promising therapy for epilepsy, US researchers from Stanford University have said.

In a clinical trial, 110 people had electrodes implanted in their brains and their seizures were monitored.

Forty-one per cent of patients showed a reduction in seizures after 13 months while 56% experienced a reduction after two years.

The patients all suffered from regular epileptic seizures and had failed to respond to drug treatment.

Deep brain stimulation (DBS) is a surgical treatment involving the implantation of a medical device called a brain pacemaker, which sends electrical impulses to specific parts of the brain.

In the group of patients who received brain stimulation, researchers noted a 41% reduction in seizures compared to a 14.5% decline in seizures in a control group. This group did not receive stimulation.

Invasive therapy

Epilepsy is a common neurological disorder which is characterised by recurrent seizures. These seizures can cause temporary loss of consciousness, convulsions, confusion or disturbances in sensations.

According to the World Health Organization, epilepsy affects 50 million people worldwide.

Previous studies indicate that one third of those with epilepsy do not respond to anti-epileptic drugs.

Dr Robert Fisher, director of the Epilepsy Centre at Stanford University and lead author of the study, said electrical deep brain stimulation does reduce seizure frequency in patients.

But he cautioned: “DBS therapy is invasive and serious complications can occur. Additional clinical knowledge would help to determine the best candidates for DBS therapy.”

Simon Wigglesworth, deputy chief executive at UK charity Epilepsy Action, said: “We have been hopeful for some time that deep brain stimulation may be a treatment option for some people with epilepsy.

“This study is exciting news and could be an important development in the treatment of epilepsy in the 30% of people whose seizures don’t respond to traditional drug therapies.”

The research is published online in the journal Epilepsia.

People With Asperger’s Are Willing And Able To Work

March 17, 2010

by samedifference1

Asperger’s syndrome has been in the news frequently of late. Growing attention is being paid to the employment challenges faced by people with this autism-spectrum disorder and the recent announcement that the label of Asperger’s syndrome itself is slated to vanish with the upcoming fifth edition of the Diagnostic and Statistical Manual (DSM) – the so-called “bible of psychiatry”, scheduled for publication in 2013 – sparking intense debate.

The decision to eliminate the diagnosis of Asperger’s syndrome has been greeted with hostility by some people with the condition, in part because this diagnosis carries less stigma than a diagnosis of autism. For some, it feels like an erasure of personal identity as well. Others view the change with less alarm since Asperger’s syndrome is already classified as an autism-spectrum disorder and thus the change does not mean they are moving to an entirely new section of the DSM, or that they cannot receive a diagnosis and all-important treatment code, used to determine eligibility for insurance and benefits.

For jobseekers with Asperger’s syndrome, first identified in 1944 by Doctor Hans Asperger, there are significant barriers to employment. According to speech pathologist Barbara Bloomfield, unemployment rates for people on the autism spectrum can range from 75% to 97%, even when the economy is healthy.

Asperger’s syndrome is characterised by difficulties with communication. Aspies, as people with Asperger’s syndrome are sometimes known, have trouble reading body language and many social cues. Some have language-processing disorders, which make spoken communication challenging; Aspies can also have trouble with eye contact, modulating their voices, shaking hands and expressing themselves verbally.

For people on the autism spectrum, developing skills that can lead to gainful employment is challenging. It may be difficult to attend university to get a degree, for example, and it is hard to find work to build experience and a résumé. Communication is key to social success and people with communication disorders, such as Asperger’s syndrome, may not be able to establish the basic connections with other people that are critical when seeking employment. It is commonly believed that Aspies are unemployable, when this simply isn’t true.

Doing well in a job interview is challenging for anyone. For people possessing valuable job skills with this communication disorder, performing well in a job interview can be extremely difficult. The prospective employer reads the unwillingness to shake hands, difficulty making eye contact and hesitation in speech as coldness or incompetence, and the applicant is rejected.

Skilled Aspies may turn to other areas of employment when they cannot find work in their chosen profession. However, they still face the fundamental hurdle of the job interview. “Don’t write me off” is the slogan of a campaign to improve access to employment and benefits for people on the autism spectrum from the National Autistic Society and it is quite fitting, as people with autism spectrum disorders, including Asperger’s syndrome, are routinely written off by prospective employers – even though autistic traits can sometimes be an asset.

People with autism spectrum disorders have traits like a high attention to detail, very intense focus and a willingness and sometimes need to repeat tasks until they are perfect. These traits are ideal for people such as computer programmers, who need to be able to focus on sometimes highly repetitive tasks with a very small margin for error. The strict need for order found among some people on the autism spectrum can also turn into an employment asset in some work environments. A sharp-eyed Aspie can often spot imperfections and problems, which might go unnoticed by someone else.

In Britain, the Autism Act 2009 was passed to address some of the social disparities, employment among them, experienced by people with autism-spectrum disorders. It is estimated that 300,000 adults in England have an autism-spectrum disorder. Those who are willing, ready and able to work cannot find employment because they are unable to pass that most basic test, the social performance that is the job interview. Thanks to the work of disability advocates, disability employment advisors are going to be receiving autism training. This training is designed to improve the support system for jobseekers with autism-spectrum disorders so that they can navigate the job market more effectively.

Even with this support, it seems likely that people with Asperger’s syndrome will continue to experience employment discrimination. Educating employers and making them more familiar with the needs of people with autism-spectrum disorders may improve chances in job interviews, but it is still difficult to overcome communication barriers, even when one is aware they exist. When two equally qualified people compete for a position and one is deemed more charismatic than the other, employers are more likely to choose the charismatic applicant.

Addressing this issue requires getting more people with autism-spectrum disorders into the workplace, including positions in human resources so that communication styles are less likely to remain a barrier to employment. However, there’s a vicious cycle: in order to reach those positions, people with autism-spectrum disorders still need to pass the interviews.

World’s Shortest Man Dies Aged 21

March 15, 2010

by samedifference1

Sad news.

He Pingping has died at the age of 21

The world’s shortest man, He Pingping, has died at the age of 21, a Guinness World Records spokesman has said.

Pingping, who was 29 inches tall, was filming a television programme in Italy when he developed chest problems.

The Chinese-born man, who became a record-holder in March 2008, was taken to hospital in Rome for treatment but passed away on Saturday. It is understood he died of heart complications.

Guinness World Records editor-in-chief Craig Glenday, who measured Pingping in Inner Mongolia to confirm his status as the world’s smallest man, paid tribute to him.

He said: “From the moment I laid on eyes on him I knew he was someone special – he had such a cheeky smile and mischievous personality, you couldn’t help but be charmed by him.

“He brightened up the lives of everyone he met, and was an inspiration to anyone considered different or unusual.”

Pingping, who was born with a form of primordial dwarfism, had been accompanied by his brother-in-law on the trip to Europe to film records show Lo Show Dei Record. His successor will be announced at a later date, Guinness World Records said.

Blind Soldier ‘Sees’ With Tongue

March 15, 2010

by samedifference1

A Merseyside soldier blinded by a grenade in Iraq has said his life has been turned around by technology that allows him to “see” with his tongue.

L/Cpl Craig Lundberg, 24, from Walton, Merseyside, can read words, identify shapes and walk unaided using the BrainPort device.

The machine converts visual images into a series of electrical pulses which are sent to his tongue.

The soldier said the device gives off “a pins and needles sensation”.

L/Cpl Lundberg lost his sight while serving with the King’s Regiment after being hit by a rocket propelled grenade in 2007.

‘Popping candy’

The Ministry of Defence (MoD) selected him to trial the pioneering device which is comprised of a tiny video camera attached to a pair of sunglasses linked to a plastic “lolly pop” which the user places on their tongue to read the electrical pulses.

L/Cpl Lundberg said it felt like “licking a nine volt battery or like popping candy”.

“You get lines and shapes of things, it sees in black and white so you get a two dimensional image on your tongue, it’s a bit like a pins and needles sensation,” he said.

L/Cpl Lundberg will still keep his guide dog Hugo

“It’s only a prototype, but the potential to change my life is massive, it’s got a lot of potential to advance things for blind people.

“One of the things it has enabled me to do is pick up objects straight away, I can reach out and pick them up when before I would be fumbling around to feel for them.”

L/Cpl Lundberg said he would still be keeping his guide dog Hugo.

The MoD said it expected to pay about £18,000 for the device and training to enable the trial to take place.

Users cannot speak or eat while using the BrainPort so designers are hoping to create a smaller device that could be permanently fixed behind the teeth or to the roof of the mouth enabling more natural use.

Heather Mills’ Prosthetic Leg Sets Off Airport Alarm

March 15, 2010

by samedifference1

Heather Mills had to have her artificial leg swabbed for explosives at Heathrow after it set off a security alarm.

The 42-year-old was at the airport to catch a flight to the US to launch her meat-free ready meals when the alarm went off.

She had to roll up her trouser leg in public while her prosthetic leg was swabbed in front of other passengers.

A spokesman for the Dancing On Ice star denied she was angry about the incident, saying: “Heather complied with security’s requirements with good grace. Heather wasn’t furious at all, she completely understands what as to be done for 21st century travel.”

A spokeswoman for airport owner BAA said: “She was swabbed because something set off the alarm in the metal detector archway.

“Staff could not see inside the leg so it was swabbed instead. This would be the same protocol if a passenger had a cast on a broken arm or leg.”

Afterwards, Sir Paul McCartney’s ex-wife made her way to the Concorde Lounge, reserved for first-class passengers and guests. But she was initially refused entry because of a “communication problem” with staff who did not have her name on their list.

The former model, who was awarded £24.3 million in her divorce settlement with Sir Paul, was booted out of ITV show Dancing On Ice after five weeks in the contest when she lost out to Hollyoaks actor Kieron Richardson in the skate-off.

Too Many Baby Hip Cases Ignored

March 15, 2010

by samedifference1

Parents and health professionals should be doing more to check babies’ hips in their first few weeks of life to prevent pain and permanent disability.

The advice comes from the charity – STEPS – that supports children and adults with lower-limb disorders.

STEPS is concerned that too many cases of hip conditions go undetected which could be corrected with simple outpatient treatment.

The government insists that it takes infant hip conditions “very seriously”.

Not catching the condition early often results in costly medical treatment and permanent disability, according to STEPS.

In the UK, around 2,000 children children every year are diagnosed with developmental dysplasia of the hip (DDH).

DDH covers a range of conditions from instability to complete dislocation of the hip.

If it is detected early, it can usually be dealt with with simple, non-invasive treatment.

All too often – according to STEPS – the condition is missed and children or adults have to have surgery, lengthy hospital stays and some are permanently disabled.

Babies are routinely screened for hip problems, but STEPS says it has evidence that the process is flawed and that too many babies are not diagnosed.

“The current screening policy – despite being in place for 40 years – is simply not working,” says the charity’s founder, Sue Banton.

“Due to late or missed diagnosis, valuable time is being lost and we are increasingly supporting the victims of a failing system.”

A Department of Health spokesman said that all babies should have a clinical examination for DDH within 72 hours.

Those with an abnormality – or the risk of an abnormality – should then have an ultrasound scan with a follow-up at six to eight weeks.

But according to STEPS, this is where the process is flawed: it has found that many primary care trusts (PCTs) are leaving management of the screening programme to GPs.

And it says there is no written policy on how GPs should do this and no way of measuring the effectiveness of the practice.

Warning signs

STEPS says that there are a number of signs that might indicate that there is a problem:

One leg appearing to be shorter than the other
An extra-deep crease on the inside of the thigh
Dragging one leg when crawling
Walking with a limp or waddle

“It is unacceptable that children are still being diagnosed late with conditions such as DDH,” said Professor Adrian Davis, director of the NHS Newborn & Infant Physical Examination Programme.

Daisy is now making encouraging progress

He said he is working with STEPS, parents and medical practitioners in order to “stop this unnecessary distress”.

The Pitts family – from Buckinghamshire – did not manage to avoid distress: their daughter, Daisy, was diagnosed with “clicky hips” one day after she was born.

But by the time specialists started to treat her, she was – at five months – a little too old for the Pavlic harness that is used to correct hip problems in infants.

After trying it and failing, her specialist booked her in for surgery – a procedure called “closed reduction”.

This also failed and a second specialist repeated the procedure which, again, failed.

This meant having to have a much more invasive “open reduction” followed by three months in a plaster cast from her ankles to her chest.

Daisy came out of her cast last week and the early signs appear to be encouraging.

“I wish we had known more about what clicky hips meant when we were first told Daisy had them,” said her father, Andy.

“If other parents find themselves with similarly diagnosed babies, they should get in touch with STEPS and use their internet forum…there is support out there and there is a whole load of people who have gone through it or are going through it.”

David Askew Case- A Response

March 15, 2010

by samedifference1

From Guardian letters, in case anyone’s interested.

Payout over Lincolnshire woman’s cancer misdiagnosis

March 14, 2010

by samedifference1

Vodpod videos no longer available.

more about “BBC News – Payout over Lincolnshire w…“, posted with vodpod

A woman from Lincolnshire has been awarded more than £500,000 in damages from the NHS after her cervical cancer was misdiagnosed.

Sam Burn, 31, who lives near Bourne, was screened in 2001 but the disease was not picked up for three years.

Subsequent aggressive treatment left her infertile, needing a stick to walk and in constant pain.

Peterborough and Stamford Hospitals Trust said it regretted the errors and procedures had been reviewed.

Mrs Burn said her life had been badly affected by her experiences.

“I do feel angry. Sometimes I wish I could go face to face with them and say: ‘Look what you have done to me’.

“But I have a little girl, a husband and a great family, so I have to try as best I can to get on with it.”

‘Rare’ incident

She added: “I am on a lot of pain medication but sometimes it is so bad my husband has to lift me into the bath or into bed.”

The family also said that while the trust had apologised, it had not explained what had gone wrong.

Under legal advice it has not revealed the exact amount of the settlement.

John Randall, medical director, said: “Peterborough and Stamford Hospitals NHS Foundation Trust can confirm that it has reached a settlement regarding the delayed diagnosis of Samantha Burn.

“The trust deeply regrets the errors in reporting Samantha’s cervical smear test in 2001 and formally apologised to Samantha.

“A review of the reporting system was undertaken as soon as the errors were known and practices changed to prevent it happening again.

“The trust strongly encourages all women who are offered a cervical smear to have the test as incidences of incorrect diagnosis are rare.”

Winter Paralympics Begin In Vancouver

March 13, 2010

by samedifference1

Veteran wheelchair curler Michael McCreadie carried the British flag at the opening ceremony as the 10th Winter Paralympics began in Vancouver.

Over 500 athletes from 44 countries will bid for medals in five events.

Team GB comprises 12 athletes – in curling and skiing – and McCreadie, 64 next week, takes part in his seventh Paralympics, with two as a coach.

“It’s great to represent all the fans back home as well as all the other athletes,” said the proud flag bearer.

Canada’s Governor General Michaelle Jean declared the 10-day, five-sport Games open.

International Paralympic Committee president Sir Philip Craven noted that his IOC counterpart Jacques Rogge described the Winter Olympics, which closed 13 days ago in Vancouver as “excellent and very friendly”.

Just follow your dreams, you have all done all you can to prepare

Olympic champion Amy Williams’ message to Team GB

“I am confident the same adjectives will be applicable to these Paralympic Winter Games,” said the five-time British Paralympian and IPC president.

Vancouver Organising Committee (Vanoc) chief executive John Furlong declared: “To the Paralympic athletes of the world, the best ever, may the days ahead be exhilarating.

“May this be the beginning of the time of your life.”

The competition gets under way on Saturday in Vancouver for ice sledge hockey and wheelchair curling and at Whistler for alpine skiing, biathlon and cross-country skiing.

McCreadie is one of three curlers returning from the team that won Paralympic silver four years ago in Turin.

His team, and skier Sean Rose represent Britain’s best chance of medals.

The curlers begin their round-robin series on Saturday against the hosts and defending champions Canada.

The final takes place on 20 March, the penultimate day of the Games.

Cambridgeshire-based Rose, 38, will compete in all five Alpine skiing events but the downhill – his best event – is on Saturday.

Olympic gold medallist Amy Williams sent a message of support to the British team.

“I just want to wish you all the best of luck and I know you have all worked really hard to be there,” said the skeleton athlete.

“Just follow your dreams, you have all done all you can to prepare. So take a deep breath at the start of your race and just enjoy it.”

A Step Forward For Same Difference- Campaigns

March 12, 2010

by samedifference1

Dear Readers,

Just a quick post to announce the beginning of a new section of Same Difference– Campaigns.

From now on Same Difference will be doing everything it can to support disability related campaigns run by charities and DisAbled people. I hope that this will be a step forward for the site as a site and not just a blog.

Best wishes, as always

Samedifference1

Man In Wheelchair Robbed In Newport Car Park

March 12, 2010

by samedifference1

A man in a wheelchair was robbed at a car park in Newport.

The 41-year-old was approached by a man in his mid 20s in the city centre on Wednesday night and wheeled into the car park on Bridge Street.

A bag containing cash, bank cards and personal items was stolen before the offender fled the scene.

The offender is described as a white male, about 5ft 7ins (1.7m), slim, and wearing a green jacket with a hood. Police are appealing for information.

The victim was travelling along Commercial Street into Bridge Street in his wheelchair when he was approached by a man who offered to help him.

Despite saying he did not need help, he was wheeled into a nearby car park and his black cloth bag was taken, some time between 2230 and 2300 GMT.

Gwent Police said the victim, who is from west Wales but was staying in Newport, was not injured.

He called to two men for help and they ran after the offender but were unable to catch up with him.

The two men returned to check the victim was okay but left before police arrived.

Anyone with information about the incident is asked to call Gwent Police on 101 or Crimestoppers on 0800 555 111.

Thalidomide Effect Mystery Solved

March 12, 2010

by samedifference1

Scientists have discovered the primary mechanism by which thalidomide causes malformed limbs in developing embryos.

This side-effect was recognised after thousands of affected children were born to mothers who had been prescribed the drug for morning sickness.

Research in the journal Science reveals that thalidomide binds to and renders inactive the protein cereblon, which is very important in limb formation.

This finding could help the development of safer thalidomide-like drugs.

‘Unknown mechanism’

Thalidomide can be effective in the treatment of certain cancers and leprosy, but its infamous side-effect, which is known as teratogenicity, mean that for women its use remains risky and controversial.

Medical researchers would therefore like to develop drugs that mimic the action of thalidomide, but do not affect limb development.

The research team, led by Takumi Ito from the Tokyo Institute of Technology in Japan, managed to isolate the negative effects of this “potentially useful” drug.

They set out to discover which target molecules thalidomide bound to in the body. They did this using tiny beads that extracted each individual molecule the drug bound to.

The scientists confirmed their conclusion by using genetic techniques to reduce the production of the cereblon protein in developing zebrafish and chick embryos.

The embryos with reduced cereblon had similar developmental defects to those that were treated with thalidomide.

“We [have shown] that cereblon… is a primary target of thalidomide teratogenicity,” the researchers wrote in their Science article.

Dr Ito told BBC News: “Although the mechanism for the teratogenic effect was made clear, the mechanism for its therapeutic effects remains unknown.

“[If we want to develop] a new drug devoid of teratogenic activity, it is important to understand [this] mechanism… this is what we are heading for.”

I imagine that this will be seen as real progress by thalidomide affected people. They finally have an answer to that most important question in the world of disability- why? Sadly it’s not a cure, but I believe it’s progress anyway, and I hope they agree.

Campaign Support- Make Channel 4 Apologise on Air

March 11, 2010

by samedifference1

Dear Readers

Same Difference would like to officially announce its support for Mencap’s campaign to get an on-air apology out of Channel 4 for the disablism shown on air in January during Celebrity Big Brother.

Please click the link above to send this e-mail to OfCom’s Ed Richards:

Dear Mr Richards

As someone passionate about equal rights for people with a learning disability, I am disgusted that Ofcom have not asked Channel 4 to apologise over the use of the word “retard” on Celebrity Big Brother.

Although the insult was not directed at a person with a learning disability, the word was used in a negative way that has upset many people.

The charity Mencap recently asked people who watched Channel 4 if they thought it was ok to use the “r” word “as a joke”. Only 1 in 10 people thought this was ok.

I think it is unacceptable that a channel which is broadcasting the Paralympics is allowed to get away with using this word. I ask you to please look again at this issue and force Channel 4 to apologise on air.

Yours sincerely

Lets get together to show them just how wrong their ruling was!

TV Channels Have A ‘Human Right’ To Broadcast Offensive Material

March 11, 2010

by samedifference1

Listening to Nick Ferrari on LBC 97.3 and an IPod at the same time on the drive to work this morning, I turned off my Ipod in shock in mid-song. What would make me, someone who usually much prefers music to any talk show, do such a thing, you might ask?

It was the discovery that this morning’s discussion was about the human right of TV channels to broadcast offensive language. I find this shocking. TV channels are organisations, businesses, not individual human beings. They don’t have human rights- but their viewers certainly do. They have the human right not to have to listen to offensive language while watching TV.

So, why am I bringing up this issue on a disability blog? Well, the discussion centred around a ruling made by Ofcom after they rejected the request of Nicky Clark, a mother of two DisAbled children, to discipline Channel 4 after Vinnie Jones used the word ‘retard’ on Big Brother’s Big Mouth, shown on E4 in January this year.

When asked how he knew that the person wearing a chicken costume was presenter Davina McCall and not a fellow contestant, he responded that it was because she was “walking like a retard” at which McCall laughed.

Ofcom say they “noted the word was directed at Davina McCall and not anyone with learning difficulties. There was not sufficient evidence to conclude that the use of the word was necessarily intended to be offensive to that particular group.” They add that it was “unfortunate” that the word was not censured, but claim that “the probable degree of harm and offence was minimal.”

I have to disagree. I didn’t see the programme, nor do I have a learning disability. I do, however, have walking difficulties, and even if I didn’t, as a DisAbled person I can see straight away how anyone with any disability would find the comment offensive. I find it offensive myself.

I have a question for Ofcom. Where was the ‘human right’ of Channel 4 to broadcast the racist language spoken to Shilpa Shetty on Celebrity Big Brother in 2007? Why was the channel found to have been wrong at that time and not now? I’ve said before that disablism is just as bad as racism, and that it deserves equal punishment. Whoever such comments are directed at, when they are broadcast on national TV there is every chance that people from the group they are about will be watching, and will be offended by the broadcast. What message is Ofcom sending out to viewers? Surely they don’t seriously think that Indian and South Asian people have more of a right to watch TV without hearing offensive language than disabled people do? If they think that no one finds disablist language offensive, I would like to inform them that they are very wrong.

Nicky Clark is requesting an on-air apology from Channel 4.

Shared Care Network

March 11, 2010

by samedifference1

I think this is a very good idea, and means real progress for carers. Whether you would like to use the service for your DisAbled child, or you think that you might be able to help by becoming a short break carer yourself, please take 2 minutes to watch this video. Thank you.

Parents Win Right To Have Disabled Daughter, 11, Sterilised

March 10, 2010

by samedifference1

I’m very sad to read that the parents of 11 year old Angela, an Australian girl who has Rett’s Syndrome, have won the right to have her sterilised.

I shared my views on this issue in some detail in late 2007 when the case of Katie Thorpe first came to public attention in the UK. I, and many people I know, were very happy when Katie’s mother did not win this right. Obviously Australian laws are very different to British ones, but my opinion on the issue is still the same now as it was then. Your comments are very welcome, as always.

Getting Out There

March 10, 2010

by samedifference1

Josh Burns grins, takes a deep breath, and takes his first tentative step onto an ice rink standing in the shadow of the twin biomes of Cornwall’s famous Eden Project. Minutes later he lets go of a friend’s hand and is flying round the ice.

Like many 14-year-olds, Josh is game for anything and eager to try new experiences. But, unlike most teenagers, he faces an uncertain future: he has Norrie syndrome, a rare genetic illness that has left him blind. Yet he is enjoying a range of activities, from ice-skating to surfing, fishing and chocolate-tasting, thanks to an innovative project that aims to end the bitter social isolation disabilities can bring.

Get Out There (GOT), is a pioneering group for young people aged 11 to 19 in Cornwall with visual impairment and significant additional needs, including deafblindness. Run by Sense, a charity focused on deafblindness, the project aims to break down the barriers that prevent young people from accessing leisure activities – and help them try new activities, make new friends and gain a sense of independence.

The pilot, commissioned by Cornwall County Council, was only set up eight months ago, following two successful open days at theme parks in the county. With funding from a variety of sources, it provides regular activities and events for visually impaired young people who would otherwise have no life outside school or home. The project is already being hailed as an excellent example of a project that meets the government’s “Aiming High” policy, launched in May 2007 with a view to improving the lives of disabled children.

Josh is just one of the young people whose lives have been totally transformed by the project. During the week, he boards at the West of England school in Exeter, travelling back to his home in Carbis Bay, near St Ives, at the weekend. He says: “GOT has made quite a lot of difference to my life and given me a whole load of new experiences. I used to get bored and just had my friends from school. Now I have got new friends and we get to suggest the activities. It is a lot of fun.”

His 15-year-old brother Sam, who is blind and has additional medical needs, also enjoys the freedom the project brings. Their grandmother Gayle Fowle says: “The boys ask us all the time ‘Are we going out today?’ The project has opened up a whole new world for them. And, for the first time, they have friends outside school.”

Such friendships are critical, says project co-ordinator Simon Allison, who noticed two years ago that young visually impaired people with multiple needs faced social exclusion. Having a daughter with restricted vision made him aware of the potential for problems. However, it was through his work as an intervener (interpreter) for pupils at the West of England school that he became aware of the isolation faced by youngsters at weekends.

“It was clear that the kids were fine at school but that was it. The rest of the time they were being passed over or easily ignored. Working with a couple of parents, we set up the open days, which proved to be very successful.”

The group now has 20 volunteers, who help at events attended by around 12 children, mostly teenagers. Activities are suggested by the young people themselves, who are eager to try anything from surfing to abseiling. Past events include a trip on the “Hagrid Express”, a train journey complete with owls as passengers during which Harry Potter stories are read aloud, while future visits include a trip to a Thorntons chocolate shop and a two-night stay at an outdoor pursuits camp.

Requests

“We work at making everything accessible,” says Allison. “At the moment we are trying to organise a visit to the Isles of Scilly, because that is what the young people have requested. We take a calculated risk. Abseiling was done in wheelchairs and was very successful. Places either reject us or do everything they can to accommodate us.” The group is now waiting to hear what funding will be available for the next 12 months. However it is already being held up as a beacon of good practice.

Sustainability is key, according to Christine Lenehan, chairwoman of the Council for Disabled Children, who describes GOT as a “simple idea that is long-term and sustainable”. She spends much of her time travelling around the UK looking at the services different local authorities are providing for disabled children. While she has found many have plans to give young disabled people more opportunities, she admits work on the Aiming High agenda has been slightly marginalised by the focus on safeguarding.

“We agree protection is a priority. Local authorities are rightly concerned with safeguarding. But the message for older young people is that they need to take risks – because if you don’t take risks as a young person you won’t take risks as an adult.

“We want to be clear that Aiming High is not a three-year programme that ends in 2011, but something that should deliver lasting change in a way that is sustainable. We don’t want to see services that are good stop next year. It takes a whole range of people to deliver change.”

Web links

Council for Disabled Children: ncb.org.uk

Sense: sense.org.uk

Aiming High: tinyurl.com/y9qpasw

BBC1 Drama Doctors Seeks DisAbled Actors

March 10, 2010

by samedifference1

Thanks to the BBC Ouch blog for the information, and to the crew at Doctors for being inclusive enough to want DisAbled actors to play DisAbled characters. I wish them luck with their search!

Could this be you or someone you know? Please distribute amongst your friends and networks.

BBC One Drama DOCTORS is casting the following roles:

Location: Birmingham

Casting Details: Elstree studios, Borehamwood Herts, w/c 15th March 2010. (invited auditions only)

What to do next? Please send an email to Laura.dickens@bbc.co.uk with a bit about yourself: age, tv / theatre experience, contact details and a recent photograph. On camera experience preferred as both are complex acting roles.

The following two characters will feature in a forthcoming storyline set in a hospital ward which has been given over to army casualties from the war in Afghanistan.

Role: ANDY MILLET (Male) Description: 2 episodes

Overall dates: 25 Mar – 2 April, and 15 – 23 April 2010.

Andy is a DOUBLE AMPUTEE (LEGS) – although he could be a SINGLE LEG AMPUTEE.

Age: he can be anything from 18 – 30-ish but he has to be a believable Squaddie-type. (If older, we could make the character an Officer.)

Andy is very depressed and experiencing (self) destructive behaviour as a reaction to losing his legs in combat in Afghanistan.

His anger at what has happened to him, his fear about his future is palpable. He will appear in 2 eps a few weeks apart and WILL NEED TO WALK CONFIDENTLY ON PROSTHETIC LEGS (or with one prosthetic leg) in his second episode.

Role: LANCE CORPORAL CHRIS DUNFORD (Male) Description: This character will appear in 6 episodes.

Overall dates: 25 March – 9 April 2010.

Age: early 20s.

Chris has suffered a spinal injury – he is now paralysed from the waist down.

We’re looking for genuine wheelchair users for this role.

In combat, Chris was hit by shrapnel and bomb blast – he has burns on his legs and has had shrapnel removed from the spine.

His legs need constant wet bandage changing, but more important is whether his spine will heal and he’ll get feeling back into his legs.

Chris grew up in foster care on a rough estate and had to learn to handle himself from an early age. Something of a loner, he craved a proper family, but never found it until he joined the army at the earliest opportunity. Given to a hard shell, he’s shocked at his sudden outbursts of emotion after the incident – he scares himself.

Nurse Michelle (played by Donnaleigh Bailey) is the only person he has a connection with at Housman ward – she makes him smile. He’s lucky to have her.

Youtube Launches Automatic Captions

March 9, 2010

by samedifference1

YouTube is making the tens of millions of videos it hosts more accessible to the deaf and hard of hearing by putting automatic captions on them.

The Google-owned company said this use of speech recognition technology is probably the biggest experiment of its kind online.

Previously captions were only on a small amount of content.

“A core part of YouTube’s DNA is access to content,” said the firm’s product manager Hunter Walk.

YouTube said by opening all this content to those who have not really been able to access it in the past should democratise information and “help foster greater collaboration and understanding”.

Initially the feature will apply to English language videos, with other languages being added in the coming months.

In November last year, YouTube rolled out automatic captions to a handful of partners including the University of California, Berkeley, Yale University and National Geographic.

‘Real solution’

The technology behind speech recognition has been around for about 50 years, said Google engineer Mike Cohen, and has finally become good enough to be used on a large scale.

“I have been working on speech technology for 25 years,” Mr Cohen told the BBC.

“There have been steady improvements and this is the culmination of lots of work over years and years. We have had to work on a wide variety of problems like accent variation, background noise, the variation in language, in pronunciation.”

Engineers say this example shows the technology has a mind of its own

The project team stressed, however, that the product is not perfect.

In one demonstration, software engineer Ken Harrenstien illustrated how the technology mistook the words “sim card” for “salmon” when Google executive Vic Gundotra addressed a developers meeting.

“It is not a complete solution but it is a step on the way to the real solution,” he said.

“It’s difficult to get every word exactly right but sometimes that doesn’t matter and other times it’s amusing.”

Mr Harrenstien has worked on the project for the last five years. As someone who has been deaf from when he was a child, he said the launch of this feature was a big deal personally.

“This is huge. It is what I have dreamt about for so many years. The fact that you can now go on to any video online and expect to see captions is unbelievable and the fact I had a part in this is great.”

Praise

Reaction to the addition of these captions has been very positive.

Students from the California School for the Deaf, in Freemont, made a video to show how much of a difference this tool means to them.

Angel Harrington signs her thanks to the YouTube team

“We felt like we weren’t part of the world. We felt excluded,” said Angel Harrington.

“Now we really can completely understand what is going on and we feel like we are on an equal playing field.”

Ben Hubbard from Berkeley said this tool is a great way to open up the more than 500 courses it offers online.

“We are always looking for a way to extend the reach of this stuff and extend the reach of the content to a whole new audience.”

This is clearly a big step forward for those with hearing problems. So it’s very good news!

The Tiger Cubs

March 9, 2010

by samedifference1

Vodpod videos no longer available.

more about “BBC – BBC Sport: Chris Charles: Doing…“, posted with vodpod

It’s the dream of every football-loving dad to one day see his child play for the team he loves. For me it’s a case of when, not if.

It’s not that little Lois is being touted as the next Wayne Rooney (even Arsenal don’t take on under-2s – yet) but having Down’s syndrome, she qualifies to play for the QPR Tiger Cubs – a side made up entirely of children born with the condition.

Of course, Lois has to learn to walk first (at 23 months she has perfected the fine art of bum-shuffling) but when she reaches the magical age of seven, she’ll be turning up at Tiger Cubs HQ decked out in the blue and white hoops – whether she wants to or not.

QPR are one of six football clubs in England who run teams for children with Down’s syndrome – Fulham, Charlton, Manchester United, Hereford and West Ham make up the rest – and supporters of the scheme are confident these numbers will continue to grow.

Patricia James, corporate fundraising officer for the Down’s Syndrome Association, said: “It all started when a colleague of mine spoke to Fulham in 2006 about disability football. A pilot scheme for the Fulham Badgers was launched later that year, and it got a fantastic response. “We had been getting feedback from parents of children with Down’s syndrome who couldn’t find any sporting activity for them to do. Eighty five per cent of these children are enrolled in mainstream primary schools, but when it comes to physical activity they often get left on the sidelines because their oxygen intake is up to 40% less.

“With this initiative, the children are becoming more active and gaining confidence. It’s also very important for their emotional and social development. Unlike sport in the mainstream schools, it’s a level playing field for everyone and they can take what they learn on the training pitches into the classroom and everyday life.”

QPR Community Trust chief executive Andy Evans, who oversees the Tiger Cubs, concurs. “It’s been phenomenal,” he said. “The kids get an incredible amount of satisfaction, a sense of belonging, and it provides a support network for the parents where they can share common experiences.

“I’ve heard stories of children in mainstream education being called up in assembly wearing their QPR kit and the whole school giving them a round of applause because they’re playing for the Tiger Cubs.”

Training sessions are held every Monday night and the most difficult task facing the coaches is getting the children to leave the pitch at the end.

Head coach Adam Finch explained: “We try to keep the sessions as energetic as we can and we also have a fundamental group where we concentrate more on the motor skills – running, skipping, jumping, that sort of stuff.

“It’s fantastic, always good fun. Some football sessions can get a bit stale, but never with the Tiger Cubs. It’s always new, fresh and exciting – and if the kids are excited, you can’t help but get excited as well.”

The scheme first came to my attention last year, when the team showed off their skills during a half-time display at Loftus Road. The crowd were right behind them, cheering every goal that went in, and the kids milked the applause that came their way.

I’d be lying if I said it didn’t bring a tear to my eye, but it also made me realise that any preconceptions I had about Lois not being able to do the things other children took for granted were misplaced. Let’s face it, after coming through major heart surgery at three months old and having to be fed through a tube for a year, kicking a football around should be a doddle.
Lois Charles - photo by Caroline Briggs

We didn’t know Lois (pictured right) was going to be born with Down’s syndrome – in fact after the 12-week scan, the nurse confidently predicted there was a one in 8,000 chance – so when we found out it was a shock to say the least. But you learn to adapt and nearly two years on, I can honestly say I wouldn’t have her any other way.

Birmingham City midfielder Lee Carsley, whose 11-year-old son, Connor, has Down’s syndrome, agrees. “You can get burdened down with it or take it in your stride,” he said. “Of course you still think about it every day but if you lay in bed worrying about it all night you’d never be able to get anything done.

“I treat all my kids the same – I’m no different to any other Dad. I love them all – although sometimes they can be a pain!”

Carsley is a tireless fundraiser in his role as patron of the Solihull Down’s syndrome support group and is in talks with Birmingham’s new owners about the possibility of setting up a team in the mould of the Tiger Cubs.

He said: “I think it’s a really good thing for the kids and can only be beneficial. Connor goes on some football coaching classes but they’re all at different levels and he sometimes gets left behind.

“He’s proud of me and what I do but while my other kids understand my role, Connor’s a bit of a glory hunter. He wants me to score a goal and that’s it. It would break his heart if he knew I haven’t scored many!”

Carsley’s former Everton team-mate Kevin Kilbane is patron of the DSActive charity, encouraging children with Down’s syndrome to get involved in sport, and is heavily involved in promoting teams like the Fulham Badgers and QPR Tiger Cubs.

The Hull midfielder, who won his 103rd cap for the Republic of Ireland against Brazil, has a five-year-old daughter, Elsie, with Down’s syndrome, and handed out the medals when the Badgers and Cubs recently teamed up to play a visiting Hong Kong XI.

“It’s a really important scheme and it’s gaining momentum by the week,” he said. “The work the team has put in has been phenomenal, but it would be great to get more kids involved. At the moment there’s not that much competition for the children with Down’s syndrome or any other disability and I’d love every club to one day have its own team.”

As for Lois, she turns two on 9 April, meaning it will be a mere 1,825 days before I finally get the chance to see her in action for the Tiger Cubs. The first two years of her life have coincided with extraordinary goings-on at my club that have seen a succession of managers come and go, leaving a team tipped for promotion embroiled in a relegation battle.

The changing of the guard in the boardroom, coupled with the arrival of football’s Mr Motivator, Neil Warnock, will hopefully steady the ship, although even Warnock would struggle to replicate the drive and enthusiasm shown by the Cubs.

Indeed some of the footballing prima donnas ticked off by England coach Fabio Capello last week could do worse than pop down to witness this unbridled passion first-hand. And not a WAG or a Ferrari in sight.

On 10 April, a few of us will be walking from QPR’s Loftus Road ground to Crystal Palace’s stadium at Selhurst Park – ahead of the game between the sides – to raise money for the Tiger Cubs. Find out more here.

America Understands Inclusion

March 8, 2010

by samedifference1

I’ve just seen the episode of American high school drama Glee called Wheels. All I can say is, that is how inclusion should be done. I’m sharing a link here for those who haven’t already seen it and who have an hour to spare. Enjoy!

Documentary Starring DisAbled Band Wins An Oscar

March 8, 2010

by samedifference1

Thanks to the BBC Ouch blog for this very interesting information, and congratulations to the members of Liyana and all involved in Music By Prudence.

Neighbours Again!

March 8, 2010

by samedifference1

In Neighbours in the UK at the moment, Lucas Fitzgerald has just had a motorbike accident and ended up in a wheelchair. Love interest Stephanie Scully is currently looking after him, which alternates between trying to cheer him up by giving him things to fix sitting down (he’s a mechanic) and screaming at him that he must accept the fact that he needs help. I’m quietly pleased to see him insisting that he can push himself, and trying to do other things for himself. I was also impressed to hear Dr Karl Kennedy asking them whether the hospital had given them an OT. Neighbours has clearly researched spinal injury and wheelchair use. Lets hope Lucas doesn’t have to do his physio in a swimming pool, like Bridget Parker did after being run over by Susan Kennedy. How long will this miraculous recovery take? Longer than the last, I hope.

My Name Is Khan

March 7, 2010

by samedifference1

I don’t usually blog about Bollywood movies, even those with connections to disability, but My Name Is Khan is the exception. Set mainly in post 9/11 America, it follows a Muslim man with Asperger’s Syndrome who sets out to meet the President of the United States- to inform him that he is not a terrorist.

The movie does cover and explain Asperger’s Syndrome in detail, but the other strands to the storyline- the Hindu/Muslim conflicts, which will be recognised by Muslims and Hindus worldwide, and, of course, terrorism and the troubles faced by ethnic minorities in post- 9/11 America- mean that reviews from non-disabled viewers barely mention the disability. This proves to me that Bollywood is able to make a movie about disability that can be discussed- and appreciated- for other things, just as Hollywood did with Avatar. This makes me proud to be a disabled Bollywood fan- and I sincerely hope that other Bollywood moviemakers are able to follow this example as well as it has been done here in future movies about disability.

The movie’s main message is that the only difference in this world is between good and bad people. While I’m sure we all wish that life could be that simple, this movie is definitely well worth a watch. For those who don’t understand Hindi, don’t worry- it has English subtitles.

£3.5M Compensation Payout For 17 Year Old With CP

March 5, 2010

by samedifference1

A County Down teenager who suffered severe brain damage at birth is to receive as much as £3.5m in compensation.

The health board which was sued over a botched delivery procedure has agreed to the payout to settle a 17-year legal fight.

It is believed to be one of the largest settlements of its kind in NI.

The youth was left with cerebral palsy after being starved of oxygen at the Ulster Hospital, Dundonald in 1992.

The teenager cannot be named for legal reasons.

His parents brought a case against the former Eastern Health and Social Services Board by claiming medical negligence during his birth.

They alleged he was in a distressed state within his mother’s womb and should have been delivered sooner.

Delaying the procedure deprived him of oxygen and caused brain injuries, it was contended.

After pursuing their claim for years, an action was due to be heard at the High Court in Belfast.

But following negotiations a settlement was reached by consent with the EHSSB’s successor, the regional Health and Social Care Board.

As part of the resolution the authority is to pay a lump sum of nearly £1.5m to the 17-year-old.

It has also agreed to annual payments of £115,000 to meet care costs for the rest of his life.

The family’s solicitor, Ernie Telford of Belfast law firm McCartan Turkington Breen, predicted what the eventual scale of damages would be.

He said: “The two figures together are likely to give a total settlement of around £3.5m.

“The boy’s mother and father are absolutely delighted with the outcome. This is a vindication for their 17-year legal battle,” he said.

David Cameron Strikes Again!

March 5, 2010

by samedifference1

I’m shocked, and very upset, to read tonight that, as part of their draft policies on schools, the Conservatives plan to call a moratorium on the ideologically-driven closure of special schools and end the bias towards the inclusion of children with special needs in mainstream schools.

It’s no secret to my friends and to regular readers of this blog that I am a passionate supporter of the inclusion of children with special needs into mainstream education. I was lucky enough to have a mainstream education myself. I’ve never said that it was perfect, but I have no doubt that I learnt far more at my mainstream schools than I would have learnt if I had had a special education. I’m lucky enough to know several very intelligent, though severely disabled, people. They, along with their parents, fought, and won, very difficult and very painful battles to be allowed access to mainstream educations. My parents and I also had to fight before I was allowed into mainstream school.

We did not go through all our battles and all our pain so that, a few too many years later, any politician would say that there was a bias towards inclusion rather than attendance of special schools.

I am the first to hate, and to avoid, getting personal in these situations, but this time, I can’t help myself. It’s no secret that David Cameron’s son, Ivan, attended a special school, so this policy has obviously been thought up from the Camerons’ personal experience. However, just as many campaigners for inclusion accept that some children need special schools, I wish that David Cameron would accept that many people have already benefitted a great deal from receiving an inclusive education, and that, given the chance, many more will benefit from inclusion in the future.

Has he considered that any ‘bias’ towards inclusion exists for a good reason- because the last time I checked, special schools didn’t teach very much that was educational at all.

As if I needed any more, this has been added to the long list of reasons why I won’t be voting Conservative. If you support inclusion, and don’t want to see children who can handle the mainstream academic curriculum being sent to special schools for no good reason, then I hope you won’t vote Conservative either.

This post is part of the Inclusion Rules! debate at Same Difference.

Welsh Wheelchair Users To Get Faster Access

March 4, 2010

by samedifference1

Wheelchairs will be delivered to patients quicker after Wales’ health minister heard how some children had outgrown them before they arrived.

Faster access to equipment such as hearing aids and artificial limbs will also be prioritised, Health Minister Edwina Hart has said.

The Children’s Commissioner said it was “a big problem to sort out” and said services must centre on users’ needs.

Around 70,000 people in Wales are wheelchair users – one in 43 people.

The assembly government claims that though the vast majority of wheelchairs are delivered to patients within 21 days of referral, in more complex cases waiting times are sometimes longer.

In November last year the health, well-being and local government committee heard evidence from the Children’s Commissioner’s office that some children waited 15-18 months for a wheelchair to be delivered.

The assembly government has announced the establishment of a single organisation with responsibility for managing and delivering equipment to create what it calls “a specialist, dedicated service.”

The work that I’m prioritising today will ensure speedier access to equipment for those patients that currently are experiencing delays

Health Minister Edwina Hart

There are currently five centres issuing equipment across Wales.

New all-Wales indicators will also be developed to show performance in ensuring fast access to equipment across the country.

Its hoped this will focus local NHS organisations’ attention on reducing waiting times.

The minister also promised a review of waiting list processes so waits for wheelchairs are brought within overall waiting time targets.

At the moment there is no target setting a maximum wait for wheelchairs.

There will also be a review of the commissioning and provision of wheelchairs for short-term loan purposes.

A project board will be established to take forward the measures and will report by June 2010.

Ms Hart said: “Across the four UK countries, Wales provides patients with the largest range of these types of equipment.

“This is a deliberate strategy to enable clinical needs to be met to best effect and avoiding unnecessary compromises in provision.

“Whilst this is a positive factor in offering choice to patients, it can have a negative impact on waiting times.

“The broader the range of equipment, the more complex the prescribing and commissioning process and, therefore, the longer the lead-in times for delivery and commissioning.

“The work that I’m prioritising today will ensure speedier access to equipment for those patients that currently are experiencing delays.”

Its a big problem to sort out – the current situation is having a detrimental impact on the development of these children

Children’s Commissioner Keith Towler

In response to the minister’s announcement Children’s Commissioner for Wales Keith Towler said wheelchair services must centre on the needs of the user.

Mr Towler said: “The Welsh Government’s promise of speedier access to equipment is to be welcomed if it includes addressing the complex needs which many children have.

“The establishment of a single organisation for managing the delivery of this equipment is also a positive step, as long as it results in shorter waiting times from referral and assessment to the delivery of the chair, a consistent service across Wales and… clear lines of accountability within the system.

“It’s a big problem to sort out – the current situation is having a detrimental effect on the development of these children.

“I just hope this latest announcement focuses people’s attention and that we see change soon.”

I’m very pleased to read this article and to see that something is finally being done about the unacceptably long waits for essential equipment in Wales. If this helps even one person, it will have come on time.

Special Needs Cuts Discriminate, Says Head Teacher

March 4, 2010

by samedifference1

A head teacher has described funding cuts of post-16 students in special schools as “blatant discrimination” which could result in tragedy.

The assembly government used to fully fund such students in the past.

But it has now indicated it will fund only 95% of their costs this year and 69% the following year. It says it is looking at other ways to find funding.

Peter Tudor, head teacher of Ysgol Cedewain, Newtown, said he believed the funding cuts may be illegal.

He said: “Its absolutely bizarre because the children in these schools have an equal right to their education as any other child.

“Its nothing less than blatant discrimination, absolutely.”

The fact they’ve specifically targeted children with special needs can only be described as discrimination against these children

Peter Tudor, head teacher

Mr Tudor said he met with the other members of the North Wales Federation of Special School Head Teachers and that they all agreed that point.

He said: “The fact they’ve specifically targeted children with special needs can only be described as discrimination against these children.”

Mr Tudor said some of the children at his school have very challenging conditions such as autism. Others live with life- threatening conditions.

Tragedy risk

He said cutting back on the children’s education would deprive them of their statutory rights, but cutting back on their care could have unthinkable consequences.

“That would lead to tragedy,” he said. “If I haven’t got the staff, what’s going to happen?”

Mr Tudor said his school had been put in the first class in each category of their inspection by Estyn but that such excellence was endangered by the cut back.

He said: “They’re suggesting we cut staffing by 31%. I can’t cut staffing by 31%. A 31% cut would take us to a very poor level of quality.”

The head teacher said the North Wales Federation of Special School Head Teachers and other bodies were taking legal advice on challenging the assembly government’s funding decision.

He said “I genuinely believe this is actually illegal discrimination. That’s what this school will try to prove.

“I genuinely really do feel that this is something that has to be fought and fought now.

“We simply won’t be able to offer a child what that child has a statutory right to receive.”

Mr Tudor said it was particularly difficult that schools were only told of the cuts three weeks before their budgets were finalised.

‘Financial constraints’

A Welsh Assembly Government spokesperson said: “We fully appreciate the financial constraints faced by both local authorities and colleges in meeting the needs of young people with special needs.

“The amount of funding allocated to local authorities for post-16 special educational needs (SEN) provision has more than doubled since 2003.

“This rate of increase, however, is not sustainable and we are presently investigating, with the help of authorities and the Welsh Local Government Association (WLGA), alternative means of allocating funding received by authorities for their post-16 special school provision.”

The spokesperson said initial allocations had been made to local authorities for SEN post-16 provision in 2010-11.

She said these allocations are based on initial funding estimates provided by local authorities, and on the budget for this provision set by the assembly in 2009.

She added: “If, at the end of the financial year, uncommitted resources are identified elsewhere in the department, all funding pressures, including these on SEN in sixth forms and colleges, will be given due consideration.”

Paralympic Hopeful Recieves 5000 Sweet Surprises

March 4, 2010

by samedifference1

A County Durham mother is hoping to trace two generous pensioners who gave her disabled son £5,000 – wrapped up in a box of liquorice allsorts.

Lyndon Longhorne, 14, from Crook, lost his legs and an arm to meningitis.

Two years ago he started swimming and is hoping to take part in the 2012 Paralympics. Charity appeal, Limbs for Lyndon, raises money to support him.

Lyndon’s mother, Tammy Shevels wants to thank the pair of anonymous donors personally.

The couple pulled up in a Nissan Micra to speak to Lyndon and told him they had been looking for him all day. They then handed him the package.

He did not immediately realise the money was concealed inside the box until his drama teacher took a look.

Ms Shevels said: “I think it is marvellous. I would just like them to get in touch because I would like to thank them myself.”

She said she respected the pair’s anonymity.

“I am desperate to get in touch. I want to do it very privately, nobody needs to know. It will be done in the strictest confidence.”

The money has been added to the Limbs for Lyndon fund, until the couple contact Ms Shevels and advise her otherwise.

A story to warm our hearts on this cold Thursday morning!

Stephen Hawking Plans To Leave Britain Over Government Cuts In Science

March 3, 2010

by samedifference1

Professor Stephen Hawking is planning to abandon Cambridge University after nearly 50 years and move to Canada in protest at Government cuts.

The world’s most famous physicist has become frustrated with falling university budgets, which he believes are scuppering scientific discoveries.

The departure of Professor Hawking, who began work in Cambridge in 1962, would be a massive blow to the university and to British scholarship.

Physicist Professor Stephen Hawking, best-selling author of A Brief History Of Time, believes falling university budgets are scuppering scientific discoveries

Famed: Professor Stephen Hawking, best-selling author of A Brief History Of Time, believes falling university budgets are scuppering scientific discoveries

The 68-year-old – who has made key advances in theoretical physics while almost completely paralysed by motor neurone disease – said restrictions in grants mean scientific research in Britain is increasingly focused on its industrial application rather than the pursuit of knowledge and discovery.

The best-selling author of A Brief History Of Time is to spend two months at the Perimeter Institute, in Ontario, this summer and, if all goes to plan, hopes to make the move permanent.

Yesterday his spokesman said Professor Hawking ‘remained heavily critical of the Government’s policy on science funding’, saying it risked ending Britain’s history of world-class thinkers.

In an attempt to reduce the Government’s deficit, cuts to higher education amounting to roughly £1billion over three years have been announced.

His graduate assistant Sam Blackburn said: ‘Professor Hawking is considering a move but it would depend on whether his trip to the institute is successful.’

However, a move abroad would present Professor Hawking with difficulties as his disability means he requires an entourage including carers and a graduate assistant to operate his voice synthesiser.

New move? Prof Hawking will spend two months at the Perimeter Institute in Ontario this summer

And he would leave behind his adapted home and members of his family from his first marriage to Jane Hawking, with whom he was reconciled in 2007 after a divorce from second wife Elaine Mason.

Professor Hawking would follow his former colleague Neil Turok, an authority on mathematical physics, who left for the institute in 2008.

Professor Turok has said the ‘door is open’ for Professor Hawking to join him permanently and has stated that the physicist’s summer visit ‘is the first of many’.

In contrast to Cambridge, the Perimeter Institute – set up seven years ago by Mike Lazaridis, the creator of the BlackBerry handheld device – has raised substantial funding from private donations.

It is ironic that Professor Hawking would leave Cambridge, which has arguably done more to advance the understanding of science than any university in the world.

It is where Charles Darwin formulated the theory of evolution and Francis Crick and James Watson identified the structure of DNA.

Professor Hawking’s distant predecessor as its Lucasian Professor of Mathematics, Sir Isaac Newton, founded modern science with his laws of motion and gravity.

A spokesman for Cambridge University, said: ‘Professor Hawking has no plans to leave Cambridge at present. However, he will be a regular visitor to the Perimeter Institute for research purposes.’

Government Plans To Help Adults With Autism

March 3, 2010

by samedifference1

Plans have been published by ministers in England to tackle the “social exclusion” of adults with autism.

Campaigners have long accused the state of ignoring adults with the condition – just 15% are in employment and half live at home.

But the cross-government strategy sets out a range of measures to help them have “rewarding and fulfilling” lives, including training for Jobcentre staff.

Experts said the steps provided “achievable solutions” to the problems.

There are about 400,000 adults with the condition in the country.

These are split evenly between those with a learning disability, sometimes known as low-functioning, and those without one, known as high functioning.

People with autism have a huge contribution to make – shutting them out deprives everyone

Phil Hope, care services minister

While children are often supported through the school system, help for adults has been much more patchy.

Just last year the House of Commons’ Public Accounts Committee said they had been “cast adrift”.

This strategy – the first of its kind – accepts they have often been excluded, but has called for a sustained effort to tackle the issue.

A national board of experts is being set up to co-ordinate the response.

They will lead a series of projects including better training for health and social care staff and guidance for the public sector to make their services more accessible.

Employment advisers working for Jobcentres will also get training on how to help people with the condition into work.

Care services minister Phil Hope said he wanted the strategy to be a “foundation for change”.

“People with autism have a huge contribution to make – shutting them out deprives everyone.”

Professor Simon Baron-Cohen, director of Cambridge University’s Autism Research Centre, said he hoped the strategy would help a group of people who were often “invisible and marginalised”.

He added: “It pinpoints achievable solutions that could radically improve the lives of people with autism.”

This is good news for adults (and children who will grow into adults) who have autism. It is good to see the government publishing these plans, as they promised to do last year.

Lloyd Coleman

March 2, 2010

by samedifference1

A deaf and visually impaired teenager from Bridgend is performing in a classical concert in front of Prince Edward at London’s Royal Festival Hall.

Lloyd Coleman, 17, is a student at Chetham’s School of Music in Manchester where he studies the clarinet, and conducts and composes.

Please take a few minutes to click the link and listen to the audio report. It’s well worth it.

Rom Houben’s Care Home Bans Facilitated Communication

March 2, 2010

by samedifference1

Dismissed for half a lifetime as being in a vegetative state, Rom Houben seemed to be able to communicate for the first time in 23 years. An assistant sensed tiny movements in his finger and helped him to tap out sentences on a computer.

His poignant observations and lack of bitterness at spending so long “locked in” to a completely paralysed body touched many when his case first came to light and caused an international sensation. He was said to be writing a book, echoing the 1997 autobiography of the French journalist Jean-Dominique Bauby, which was made into the film The Diving Bell and the Butterfly.

However, today his care home has banned the controversial technique of “facilitated communication” (FC) and Mr Houben’s thoughts are once again considered beyond reach.

The 46-year-old’s brief period of lucidity was a fantasy, his doctors declared after carrying out further tests. The issue has led to bitter recriminations between medics, carers and relatives who are refusing to abandon the approach that had apparently brought Mr Houben back to life. As well as raising painful questions about the true state of his consciousness, the case has implications for hundreds of other brain-injury patients suspected by their families of retaining full awareness while lacking the physical means to communicate.

“I shall never forget the day when they discovered what was truly wrong with me,” Mr Houben’s computer proclaimed last year, thanks to help from his facilitator.

“It was my second birth. I want to read, talk with my friends via the computer and enjoy my life now that people know I am not dead.”

Mr Houben was just 20, and a martial arts enthusiast, when he narrowly survived a car crash in 1983.

His mother and sister refused to accept that he had been left permanently unconscious and their persistence paid off when Professor Steven Laureys, the head of the coma science group at Liège University Hospital, in Belgium, discovered four years ago that Mr Houben’s brain scan was nearly normal.

A speech therapist said that she detected tiny movements in his hand and one of his carers, Linda Wouters, became adept at helping him to express himself.

The FC method involved an assistant holding Mr Houben’s hand poised over a computer screen and pressing his right forefinger against letters of the alphabet.

“When he moves, you can hardly see it but I can feel it,” Ms Wouters told The Times in November.

“The tension increases and I feel he wants to go, so I move his hand along the screen and if it is a mistake he pulls back. As a facilitator, you have to be very careful that you do not take over. You have to follow him.”

Doubts began to be voiced as soon as television pictures showed Mr Houben and Ms Wouters typing furiously while she supported his right hand. The words flowed even when Mr Houben seemed to have his eyes closed or averted from the screen.

“It seems impossible that someone with his level of paralysis, and years of inactivity, would be able to type so quickly with just a little support,” said Steven Novella, an academic clinical neurologist at Yale University School of Medicine.

“There is little doubt, in other words, that his typing is the product of bogus facilitated communication — the facilitator is doing the communicating, not Houben.”

Arthur Caplan, Professor of Bioethics at the University of Pennsylvania, said: “It is Ouija board stuff. It’s been discredited time and again when people look at it.”

The outcry led Professor Laureys to propose a simple scientific test. Three paralysed patients were shown objects or told words while their facilitator was out of the room, and then asked to describe them with the help of their carer. This was repeated 15 times. Mr Houben did not give any correct responses.

“There were people who were convinced that it comes from the patient but it does not,” Professor Laureys said.He repeated tests on Mr Houben’s consciousness, asking him to imagine playing sport for “yes”, or reading a map for “no”, utilising different parts of the brain that can be seen on a scan. He passed the test. “There is no doubt about his consciousness, which is why this is so painful,” said Professor Laureys. “Yes he is conscious — but you just cannot communicate with him.”

Mr Houben’s case does not now seem comparable with that of Mr Bauby, who was able to write The Diving Bell and the Butterfly by blinking his left eyelid as the alphabet was recited. It is now unclear if Mr Houben has any provable, controllable, physical movements despite claims that he can indicate “yes” or “no” with his foot.

Relatives of all paralysed brain injury patients face huge questions about whether their loved one is still conscious, feeling pain, or even ready to die — a loaded question in Belgium, where euthanasia is legal. Mr Houben’s case was taken up by anti-euthanasia campaigners as proof that hope should never be abandoned.

Mr Houben’s family have not given up. His sister, Tereïna, 53, has vowed to continue using FC as well as trying to find other ways of interacting with her brother.

“I am doing it, my mother is doing it, altogether six people who know Rom are doing it and we get information about how he is feeling,” she said.

“We know that sometimes people with brain injuries sometimes lose the communication between words and images, or words and function. We also know that Rom has a big problem with his memory, so sometimes you can speak normally and sometimes you cannot speak at all with Rom. It depends also on the medication.

“We cannot prove it, but there are many things we cannot prove, like osteopathy and acupuncture.”

When FC was first pioneered with autistic children in the 1970s, it seemed like a powerful new technique. Children thought to be too brain-damaged to communicate were believed to have almost intact intellects. However, blind trials showed that it was the facilitator, not the client, who was communicating.

Dr Novella said: “FC is nothing but a well-meaning delusion. But it is also a dangerous one — FC testimony has led to the false conviction of adults accused of abuse.”

Not every expert dismisses the technique, however. Anne Emerson, of the Nottingham Trent University psychology department, said that although evidence was anecdotal, families around the world reported “increased levels of wellbeing, reduction in challenging behaviour, increases in independent skills, and increases in other forms of communication — including speech and the development of independent typing — in those who use FC.”

Ms Wouters angrily defended herself in an interview with the regional newspaper, Het Belang von Limburg: “Laureys paints me as a charlatan but I know Rom really can talk. I have nothing to hide. The world must know that Rom really can communicate. I am not a fraud.”

Managers of the care home in Zolder, eastern Belgium, where she works ordered FC to be stopped last week.They said: “We will find other communication methods with Rom but it needs time. We have to start again.”

I am very sad to read this article. I have no doubt that Rom Houben and his family are feeling much, much worse at having their only method of communication with each other taken away from them so unfairly.

Anne Emerson just happens to be a good friend of mine. She has helped many people to communicate using FC. Personally, I think the system is a great invention for those who very often can’t express themselves any other way, and, knowing several very intelligent severely disabled people, I sincerely believe that those who use FC communicate their own thoughts and choices, and not those of their facilitators.

As always, your comments are very welcome.

Caitlin’s Wish

March 1, 2010

by samedifference1

‘CAITLIN’S WISH’ by Victoria Taylor.

Illustrations by Claire Wiles.

Caitlin’s Wish is a storybook written for children who have a disabled or sick family member, relative or friend. It is a magical fairytale with a twist. Enabling young carers to see their role from a different perspective, and enabling those not affected by disability to get an insight into what being a young carer is really like!

Victoria wrote it for her daughter, Adele-Caitlin when she found it hard to come to terms with her father’s disability. Adele-Caitlin was only 2 yrs old when her father was diagnosed with a rare neurological condition called Intracranial Hypertension (IH). She was so young that she just accepted the situation. It was only when she went to school that she started to compare her life with others and realised that her life was different. She became a very sad little girl.

“Why MY Dad? It’s not fair!” she’d say.

There is very little support for young carers under the age of 8 yrs old, so Victoria wrote this book to try and help Adele-Caitlin feel better and think more positively. Through reading the book Adele-Caitlin changed her perspective on life. She realised that disability and illness can affect anyone at anytime in their life, and it’s no-one’s fault. That’s just the way it is. She learned to think of the things that her Dad could do now, rather than dwelling on what he couldn’t do anymore. Looking for the positive elements in her life rather than focusing on the negative.

It helped Adele-Caitlin and her brother Chris so much that Victoria is publishing the book, in the hope that it might help other children.

These days Adele-Caitlin and Chris both attend the Crossroads Young Carer’s Project and the family receive an amazing amount of support from Crossroads Care. Victoria adds “Crossroads Care are a lifeline to us, and I am so grateful for the difference they have made to our lives!”

Victoria is also involved in the IH awareness campaign. She adds “IH is an invisible illness where the person looks “fine” when they are not! Old names for IH include Pseudotumor Cerebri and Benign Intracranial Hypertension. Most people have never heard of it, including many in the medical profession.

“Intracranial hypertension” literally means that cerebrospinal fluid (CSF) pressure within the skull is too high. Chronic intracranial hypertension (IH) is a serious neurological disorder that can cause severe headaches, vision loss, blindness and life-altering disability. No two cases are the same, making it a difficult condition to manage. Anyone can develop chronic IH at anytime in life. Currently there is no cure!

The IH Research Foundation is working hard to improve the lives of people with IH. They have helped us to learn so much about the condition; enabling us to rebuild our lives, and learn to cope with IH. We need to raise awareness about this devastating condition, and then IH sufferers might get treated with the compassion they deserve!”

Caitlin’s Wish is out now, published by Authorhouse priced at £10.99 ( RRP £14.99) (www.authorhouse.co.uk/bookstore ) ISBN 978149071240

A percentage of the profits from every book sold will be going to Crossroads Care (www.crossroads.org.uk) and the IH Research Foundation (www.ihrfoundation.org)

For more information on Caitlin’s Wish please go to www.caitlinswish.co.uk. Thank You.

Return of The Blog

March 1, 2010

by samedifference1

Dear Readers,

I am back online after a wonderful holiday, which means that Same Difference is now back!

Best wishes, as always

Samedifference1

On Holiday

February 12, 2010

by samedifference1

Dear readers,

Samedifference1 is on holiday from today, Friday, February 12th, 2010 until March 1st, 2010. Unfortunately, this means that she will not be able to update Same Difference in any way during this time.

For your fix of disability news during this time, Samedifference1 recommends the BBC News website and the BBC disability website, Ouch!.

Samedifference1 also hopes that you will continue to visit this blog while she is away and look through everything that is already here. She would like to say that she will miss you all (probably much more than you’ll miss her) and she looks forward to returning in March to rant, rave and report disability news as usual.

With best wishes, as always.

Samedifference1

False Limbs Expert Struck Off Over Wrong Foot

February 11, 2010

by samedifference1

An artificial limbs specialist who fitted a left foot to a patient who had lost his right leg has been struck off.

Malcolm Griffiths admitted 16 charges relating to 11 patients at a rehabilitation clinic in Edinburgh.

The Health Professions Council heard complaints against Mr Griffiths, relating to his time at the Astley Ainslie Hospital.

One of the charges was he fitted a left foot to Patrick Morrison, 76, whose right foot had been removed.

The hearing heard that Mr Griffiths also failed to spot his error at two later check-ups.

Mr Morrison, from Bathgate, should have been given an artificial limb and right foot.

In pain

Mr Griffiths appeared before the conduct and competence committee of the Health Professions Council at the hearing in Edinburgh.

The charges he faced included fitting a lower limb with the wrong foot and and failing to provide adequate prosthetic care, which meant the socket required remaking.

Mr Morrison said he had been forced to have the limb fitted after an amputated toe became infected with MRSA following hospital treatment.

He said the wrongly fitted limb had a shoe on it which may have made the error harder to spot and that he bore “no malice” towards Mr Griffiths.

The specialist also faced several other claims relating to his time at the Astley Ainslie’s rehabilitation centre.

These included failing to keep adequate notes, failing to carry out repairs and leaving a patient in pain.

Mr Griffiths’ lawyer said his client admitted all the charges against him and requested that his name be removed from the health profession’s register.

MS Study- One Patient’s Experiences

February 11, 2010

by samedifference1

A team in New York has reported the first results of a trial to test the theory that restricted blood flow in the brain may underlie some of the symptoms of multiple sclerosis.

Gianfranco Campalani knows a thing or two about the vascular system.

He’s one of Northern Ireland’s leading heart surgeons.

He was diagnosed with multiple sclerosis (MS) in 1986 – it left him with a series of problems in his lower body.

He finds it hard to walk more than fifty yards, or he did until he met an Italian compatriot and fellow vascular surgeon Professor Paolo Zamboni.

New theory

Professor Zamboni has pioneered a new theory of the cause of MS and has suggested a potential new treatment.

MS has always been thought of as an autoimmune disease.

For reasons that are not clear, the bodies’ immune system attacks nerve cells in the brain which send messages to the rest of the body.

Professor Zamboni starting investigating MS when his wife was diagnosed with the condition.

He discovered she had constricted jugular veins in her neck.

His theory is that the narrow veins decrease the flow of blood from the head.

Pressure builds up in the smaller vessels in the head leading to deposits of toxic iron from the blood which cause damage in the brain.

He then tested a further 65 patients with MS and found they all had twisted or constricted jugular veins.

Gianfranco was one of those patients.

Chance meeting

They met three years ago in Italy when Gianfranco was visiting his brother – they all come from the same town – and the conversation soon turned to MS.

Prof Zamboni invited Gianfranco to be tested.

What happened at the clinic was electric.

“I nearly kissed him!” Gianfranco said. “It’s funny, somebody tells you you’ve got something wrong and you are so happy.

“Finally you realise MS is not a disease of unknown origin. It’s due to these anomalies in the veins which are present from birth.”

A year later Gianfranco returned to Italy for treatment.

It was done under local anaesthetic. Gianfranco watched it happening.

Dramatic effect

An angioplasty – a small balloon was positioned in the vein and slowly inflated.

An ultrasound image shows the constricted vein in Gianfranco’s neck

When the balloon is removed, the vein – which was constricted – was a normal width and the blood flows more freely.

The effect was dramatic.

“Five hours after the procedure I got up and I walked the corridor without my stick.

“My partner cried.

“She never saw me walking like that.

“I was walking before the procedure but with a lot of difficulty.

“I was not able to lift my leg easily.

“But five hours after the procedure I can walk without my stick, I can lift my leg, my back is stronger I’m taller.

“In the subsequent days and weeks I see that other functions which were not working 100%, they work.”

Last year, Gianfranco felt his condition worsen.

He asked colleagues in Belfast to check his jugular veins.

They had both constricted again.

He had a repeat angioplasty in Belfast in October and claims to have improved.

Questions

Yesterday researchers at the University of Buffalo revealed early findings from 500 patients.

They found that 55% of patients with MS had narrow veins in the neck – twice as much as healthy people.

Zamboni’s theory and the new research from America raises many questions.

Is this a new explanation for the cause of MS?

Is angioplasty of the jugular veins a potential new treatment ?

Many experts are sceptical.

They say at this stage there is no proof of a causal link between blood flow and MS.

There is uncertainty about the level of pressure needed in the blood vessels in the brain for red cells containing iron to cross the blood brain barrier.

The MS society says there have been no clinical trials of the procedure and much more work is needed.

“We need more investigation – more scientific research into cause and effect,” Gianfranco acknowledges.

But for him, Prof Zamboni has opened up a new way of looking at MS and one that has improved his life.

Brain Blood Vessels Clue To MS

February 10, 2010

by samedifference1

More than 55% of multiple sclerosis patients have been found to have constricted blood vessels in their brains, a US study says.

The preliminary results are from the first 500 patients enrolled in a trial at the University of Buffalo.

The abnormality was found in 56.4% of MS patients and also in 22.4% of healthy controls.

The MS Society said it was intriguing but not proof that this caused MS – as one leading expert claims.

Testing theory

The New York researchers were testing a theory from Italian researcher, Dr Paolo Zamboni who claims that 90% of MS is caused by narrowed veins.

These results are intriguing but it is important to remember that although people with MS may show evidence of chronic cerebrospinal venous insufficiency in screening studies, there’s no proof as yet that this phenomenon is a cause of MS, nor that treating it would have an effect on MS

Dr Doug Brown, MS Society

He says the restricted vessels prevent the blood from draining fast enough and injure the brain by causing a build up of iron which leads to MS.

He has already widened the blockages in a handful of patients including his wife.

MS is a long-term inflammatory condition of the central nervous system which affects the transfer of messages from the nervous system to the rest of the body.

The Buffalo team used Doppler ultrasound to scan the patients in different body postures to view the direction of venous blood flow.

The 500 MS patients, both adults and children, also underwent MRI scans of the brain to measure iron deposits in surrounding areas of the brain.

The full results will be presented at an American neurology conference in April.

There were 161 healthy controls.

‘Cautious optimism’

Robert Zivadinov who led the study at the University of Buffalo, said he was “cautiously optimistic and excited’ about the preliminary date.

“They show that narrowing of the extracranial veins, at the very least, is an important association in multiple sclerosis.

“We will know more when the MRI and other data collected in this study are available.”

Dr Doug Brown, Biomedical Research Manager at the MS Society, said: “These results are intriguing but it is important to remember that although people with MS may show evidence of chronic cerebrospinal venous insufficiency in screening studies, there’s no proof as yet that this phenomenon is a cause of MS, nor that treating it would have an effect on MS.

“The next step is to determine what this actually means for MS and an investigation into whether there’s any potential therapeutic benefit from treatment will be pivotal for this novel theory.”

Councils Get What They Deserve Over Personal Care Budgets

February 10, 2010

by samedifference1

Care services minister Phil Hope has given a rocket to councils that are failing to provide information about personal budgets to disabled and older people.

He said it was “not good enough” that many councils in England were still not offering proper assistance on the budgets, almost two years into the government’s Putting People First (PPF) programme to transform adult social care.

Hope was responding to a “mystery shopper” survey by disability charity Livability. It contacted more than 100 councils responsible for social care and sought information about personal budgets, which enable eligible disabled and older people to arrange their own care and support.

Of 103 councils approached, 45% had no information about personal budgets on their websites, 50% misdirected telephone inquiries about them, 22% were unable to offer any information at all and just 3% could recommend any additional sources.

Portsmouth city council and the City of London authority emerged as the best performers, both scoring maximum marks on Livability’s criteria. Barnet council in north London came third.

A separate survey of 500 disabled young adults, carried out for Livability by researchers nfpSynergy, found that 87% had never heard of personal budgets and 54% did not know the name of their local council responsible for social care.

Mary Bishop, the charity’s chief executive, said the findings of the two surveys were extremely worrying. With just over 12 months of the three-year PPF programme to go, there was “woefully inadequate” awareness of something that had the potential to transform the lives of disabled people.

Mark Harper, Conservative shadow minister for disabled people, said:

“There is clearly a role here for central government to show more leadership and to impress upon local authorities the importance of making these opportunities available for disabled people.”

Hope said councils had no excuse not to be providing adequate information and advice on personal budgets, which he expected to hit the 200,000 mark later this year.

The minister acknowledged, however, that the Department of Health might need to be more prescriptive. “I do think we have to make it much clearer what information and advice councils should be prescribing.”

Under PPF milestones, all English councils should be offering personal budgets by this April. By April 2011, 30% of all eligible users of social care services should have a budget.

The Scottish government has issued consultative proposals for a 10-year strategy, mirroring PPF, under which self-directed support, including personal budgets, would become “the mainstream mechanism” for delivering social care.

Carers Offered Breaks Under Government Plans

February 10, 2010

by samedifference1

Local councils in England are to be required to provide free short breaks for the parents and carers of disabled children, under government plans.

The breaks can be in the day or overnight, in or out of the home, and may give youngsters the chance to experience fun new activities.

Some £280m in local authority grants has been provided over 2008-2011 to improve services on offer.

The government said short breaks made a big difference to children’s lives.

‘R and R’

Children’s Secretary Ed Balls said it was vital that parents and carers of disabled children were given the chance to have a rest from the “tremendous strain” of their caring responsibilities.

“I know short breaks offer parents and carers the chance to have a rest, recover and rejuvenate, so they are better able to continue to provide the care their disabled children and other family members need.”

They also offered disabled children new opportunities, the chance to mix, socialise and gain a sense of independence, he said.

The breaks would be offered for free but it would be down to local authorities to decide who should be eligible.

The Department for Children, Schools and Families has launched a consultation on the issue.

NI Thalidomiders Share £1.1M Compensation

February 9, 2010

by samedifference1

Eighteen thalidomide survivors from Northern Ireland are to share £1.1m of government compensation.

Thalidomide was a drug given to pregnant women to combat common symptoms of early pregnancy.

It was withdrawn from use in the early 1960s when it was discovered that it was responsible for producing harmful effects to the foetus.

Health Minister Michael McGimpsey has said £1.1m will be made available to sufferers in NI.

The effects of thalidomide, which could develop after a single dose, involved mainly malformation of the limbs and defects of the ears, eyes and internal organs.

The money will be made available to the Thalidomide Trust, which was established in 1973 to provide support to those born with disabilities because their mothers had taken the drug.

“I fully support the principle of meeting the health needs for any patient who has suffered ill health through using medicines which, unknown to them, carried unacceptable safety risks,” said Mr McGimpsey.

“My officials will undertake discussions with the Trust to agree how a personalised way of meeting these needs can be best achieved.

“I am sincerely sorry for the injury and suffering endured by those affected when expectant mothers took the thalidomide drug between 1958 and 1961.”

Paul Anderson, a thalidomide survivor from Northern Ireland welcomed the move.

“It will make a significant difference to the lives of Thalidomiders,” he said.

£100,000 Compensation Awarded To Girl Left With Erb’s Palsy At Birth

February 8, 2010

by samedifference1

The family of a girl who was left disabled at birth because of errors made by hospital staff in Dorset has won a £100,000 compensation battle.

Mother Julie-Ann Nash suffers from gestational diabetes which caused her baby, Laura, to be bigger than usual.

Poole Hospital staff used a “corkscrew” method during birth which displaced Laura’s right shoulder. Laura, now six, is unable to use her right arm.

Poole Hospital NHS Foundation Trust has apologised to the family.

The trust said training of doctors had been “strengthened” since Laura’s birth.

Ms Nash said: “It is a relief in one sense because when she is older she can fund herself for her heath and care needs.

She still has difficulty now, she’s unable to dress and feed herself without help

Julie-Ann Nash

“But can you put a figure on reversing a disability that somebody else has caused your child?

“She was a bit bigger than a normal baby, her head was delivered normally but her shoulders were too big for my pelvis.

“They used an inappropriate manoeuvre and, when they pulled her, snapped the right-side collarbone.

“She still has difficulty now, she’s unable to dress and feed herself without help.”

Laura, whose condition is called Erb’s Palsy, will receive the payment on her 18th birthday.

The trust said: “Poole Hospital has given unreserved apologies to Laura and her family and we hope that the settlement will help Laura to achieve her future plans and aspirations.

“Poole Hospital delivers some 4,500 babies each year and… deals with very many complex cases each year.

“In this case we have strengthened the training of doctors to ensure they can give optimum care to mother and babies at all times.”

Heather Mills Voted Off Dancing On Ice

February 8, 2010

by samedifference1

Sir Paul McCartney’s ex-wife Heather Mills has been voted off ITV1 show Dancing on Ice after losing out to actor Kieron Richardson.

Mills – who has had difficulty doing some of the skating moves because of her prosthetic leg – said she was glad her efforts had encouraged others.

“I’m so excited that all the kids that have lost limbs are now going out to skate,” she said.

The lowest mark in the main competition went to GMTV’s Dr Hilary Jones.

Highest score

He got 11.5 points out of a possible 30, although some of the judges said his performance was more solid than last week’s.

The judges said the skate-off between Mills and Hollyoaks star Richardson “couldn’t be closer” but four out of five panellists voted to give Richardson another chance.

Former Emmerdale actress Haley Tamaddon received the highest score of the night, despite her professional partner tripping on the ice, which caused the pair to take a tumble.

Nine couples will return to skate in next week’s show.

Julie McElroy’s Latest Challenge

February 8, 2010

by samedifference1

I’ve just found out that DisAbled challenger Julie McElroy, who was first covered by Same Difference in 2008 when she helped wheelchair users climb Ben Nevis to raise money for charity, is planning to cycle 350 miles across the Gobi Desert next year.

I’d like to wish Julie, now 24, all the best with this challenge. She continues to be an inspiration to me and, I hope, to anyone with any DisAbility.

Body Of Missing Blind Woman Found

February 6, 2010

by samedifference1

An update on this case, which I am very sorry to read:

A 46-year-old blind woman with hearing difficulties who was reported missing has been found dead.

South Wales Police had appealed for help to trace Wendy Barnes, of Barry, Vale of Glamorgan, who had last been seen on Thursday afternoon.

The body of Ms Barnes was discovered near Sully Road, Penarth, on Friday night.

Police are not treating her death as suspicious and thanked local people who gave information to help locate her.

Supt Liane James said: “I would like to thank the community who came forward with information that was instrumental in us discovering Wendy Barnes. Our thoughts go out to her family.”

Frances Inglis Appeals Against Life Sentence

February 6, 2010

by samedifference1

The mother jailed for life last month after being found guilty of murdering her brain-damaged son has lodged an appeal in the high court against her conviction and sentence. Frances Inglis wrote to selected newspapers including the Guardian today to announce her appeal after being given a life sentence with a minimum term of nine years for killing her 22-year-old son, Tom, with a lethal dose of heroin.

Tom had been severely disabled after falling out of a moving ambulance in 2007 and his mother believed he would remain severely disabled and never recover.

“I want to make it clear that I am in no way opposed in principle to medical treatment and that if Tom could ever have recovered enough to enjoy any quality of life, I would have nursed him 24 hours a day for as long as necessary. But when there was no chance of any quality of life, I saw it as cruel and barbaric to allow – even force – him to suffer such agony,” claimed the 57-year-old in the letter, written from Bronzefield jail in Ashford, Middlesex.

Today her solicitor, Katie Wheatley, explained the grounds for the appeal. She believes the judge was wrong not to direct the jury to consider a defence known in law as “slow burn provocation”. This applies to people who are driven to act when under extreme pressure, and is most commonly used in domestic violence cases where the victim retaliates after years of abuse. In this case, it will be argued that Inglis was driven to kill Tom after witnessing his suffering and learning that the only legal way to end his life would be to apply to the high court for an order to withhold nutrition and hydration.

Had the jury been allowed to consider that defence, they could have returned a verdict of manslaughter, which offers greater sentencing discretion, said Wheatley.

Inglis is also appealing against the sentence given to her by Judge Brian Barker QC, the common serjeant of London.

“The minimum term of nine years was far too long and failed to fully reflect the mitigating features of this case,” said Wheatley. Though murder carries a mandatory life sentence, the minimum term imposed by a judge can be as short as he or she wishes.

In her letter today Inglis wrote: “I still live with the pain of the loss of my wonderful son and the awful knowledge of what he suffered, but I am comforted that he is no longer suffering and is at peace. What I did in releasing Tom was the most harrowing, the most heartbreaking and difficult thing I have ever had to do … I begged God for a miracle of recovery or Tom’s peaceful death.”

As the article says, the defence of slow burn provocation is most commonly used for domestic violence cases. It was first created for such a case. Provocation is accepted as a defence for murder when the victim has done something to make the killer lose self-control- such as domestic violence.

I really can’t see what Thomas Inglis could have done to provoke his mother’s actions, considering that he, according to reports, spent the time since his accident unable to move, and therefore physically unable to do anything to make her lose self control. In my opinion, the judge was right not to suggest this defence to the jury. I can’t understand why her lawyer is allowing this defence to be used in the appeal.

Premature Birth Gene Clue Found

February 6, 2010

by samedifference1

DNA differences which appear to affect the risk of giving birth early have been found by US scientists.

The US National Institutes of Health study found the variants in both babies and mothers, a US conference was told.

It is thought they may play a role in controlling immune responses which could theoretically trigger labour if they become too powerful.

Premature birth – which accounts for 7% of UK births – is one of the biggest threats to a baby’s future health.

The development of a reliable test for identifying these mothers is vital in ensuring our most vulnerable babies have the best possible outcomes

Andy Cole, Bliss

The causes of premature birth are poorly understood, although infections and other medical complications are blamed in some cases.

The study looked at 700 DNA variants in 190 genes in women who delivered early, and those who carried their baby to term.

The cord blood of the babies was also tested for these variations.

They narrowed the search down to a handful of gene variations found more often in the women who gave birth prematurely, and their babies.

In particular, babies who carried the gene for the “Interleukin 6 receptor” were more likely to be born early.

This was a good candidate gene because Interleukin 6 is produced by cells in response to infection and is involved in inflammation.

High levels of Interleukin 6 in the amniotic fluid and foetal blood have been linked to the onset of premature labour.

Baby threat

Dr Roberto Romero, who led the study, said: “Our hypothesis is that the mother and/or the foetus signal the onset of preterm labour when the environment inside the uterus is unfavourable and threatens the survival of the maternal-foetal pair.

“When there is an infection in the uterus, the onset of premature labour appears to have survival value – it would allow the mother to rid herself of infected tissue and preserve her ability to have future pregnancies.”

The chief executive of charity Bliss, Andy Cole, welcomed the study results.

“In England alone, 54,000 babies are born prematurely each year, a third of these for no known reason,” he said.

“The development of a reliable test for identifying these mothers is vital in ensuring our most vulnerable babies have the best possible outcomes.”

Bliss may welcome this study as progress, and I can see why. It gives us a possible reason for premature birth- one of the main causes of physical disability in the world.

However, before we get too excited by these results, more research is needed to see whether there are any other previously unknown causes of premature birth. Most of all, we need to find out whether there is any chance of developing treatments that may prevent premature births caused by this gene.

Police Appeal Over Missing Blind Woman

February 6, 2010

by samedifference1

Wendy Barnes may be in Barry or Penarth, police believe

Police are appealing for help in finding a blind woman who is missing from her home in Barry, Vale of Glamorgan.

Wendy Barnes, 46 and 4ft 5in (1.3m) tall, also has hearing difficulties.

South Wales Police say Ms Barnes was last seen on Thursday afternoon and could be in the Barry or Penarth areas.

Anyone who may have seen her, particularly in the Gibbonsdown, Coldbrook Road and Langlands Road areas of Barry, should contact police on 101.

Ms Barnes is described as being of large build with very short greying light blonde hair.

When last seen she was wearing a tweed, beige and coffee coloured calf length skirt, a light cream patterned top and cream cardigan with pockets.

She was also wearing a beige hooded calf length coat with black shoes and handbag.

I’m posting this to help spread the word… bloggers, if you think you have readers in Wales, please cross-post it, and let’s see if we can really make a difference. Thanks!

Congratulations Baroness Grey-Thompson!

February 5, 2010

by samedifference1

I’m very pleased to read this. There will now be one more truly DisAbled person in Parliament.

Four new non-party-political peers recommended by the House of Lords Appointments Commission were announced today.

Baroness Grey-Thompson, as the leading Paralympic sportsperson in the history of the Great Britain team, will put her considerable skills and intellect to the areas of sport, disability and youth.

“I feel incredibly honoured to have been considered for this, and to have been accepted into the House of Lords. I went through great nerves as an athlete, but I’ve had sleepless nights about my first speech there,” Grey-Thompson told The Daily Telegraph.

Grey-Thompson, as Grey before she married Dr Ian Thompson, began her international career in 1988 in Seoul, where she won a bronze medal in the 400m.

Yet by her last Paralympic Games in Athens in 2004, she had amassed 16 medals (11 gold, four silver and a bronze) and 13 World Championship medals (six gold, five silver and two bronze).

In Barcelona in 1992, and in Sydney in 2000, she won four gold medals at each Games. Grey-Thompson is also a non-executive director for UK Athletics, sits on the board of the London Marathon and the Board of Transport for London (2008).

She is Chair of the Womens Sports and Fitness Foundation Commission on the Future of Womens Sport.

Her work extends further, as patron of numerous charities including Sportsleaders UK. She is vice-chairman of the Laureus World Sport Academy, and a trustee of the Sport for Good Foundation. She is also a Council Member for the Winston Churchill Memorial Trust, and a UNICEF International Inspiration Ambassador.

In 1993 she received an MBE for services to sport, in 2000 the OBE for services to sport and in 2005 was made a Dame Commander of the Order of the British Empire.

Sporting honours – apart from the 11 gold medals at the Paralympics and over twenty world records – include being named the BBC Wales Sports Personality of the Year, and in 2000, she came third in the BBC Sports Personality of the Year, behind Steve Redgrave and Denise Lewis.

Baroness Grey-Thompson, who has been a columnist for The Daily Telegraph sports section for over 10 years, said it would be “a day I will remember forever. But the hard work starts now – as I would really like to make a difference.”

Artificial Pancreas Hope For Type 1 Diabetes

February 5, 2010

by samedifference1

Scientists in Cambridge have shown that an “artificial pancreas” can be used to regulate blood sugar in children with Type 1 diabetes.

A trial found that combining a “real time” sensor measuring glucose levels with a pump that delivers insulin can boost overnight blood sugar control.

The Lancet study showed the device significantly cut the risk of blood sugar levels dropping dangerously low.

Experts said the results were an important “step forward”.

Type 1 diabetes is a chronic, life threatening condition, in which the pancreas does not produce insulin – the hormone that regulates blood sugar levels.

We need to redouble our efforts to move the artificial pancreas from a concept in the clinic to a reality in the home of children and adults with Type 1 diabetes

Karen Addington, Juvenile Diabetes Research Foundation

‘Pump has been really liberating’

In total, 17 children and teenagers with Type 1 diabetes took part in the study over 54 nights in hospital.

Individually, the glucose monitoring system and the insulin pump used in the study are both already widely used and commercially available.

But in order to turn them into a “closed loop” system which monitors the patient’s condition and delivers treatment accordingly, the researchers developed a sophisticated algorithm to calculate the appropriate amount of insulin to deliver based on the real-time glucose readings.

They then measured how well the artificial pancreas system controlled glucose levels compared with the children’s regular continuous pump, which delivers insulin at preselected rates.

Low blood sugar

Testing was done in different circumstances – for example on nights when the children went to bed after eating a large evening meal, which can lead to ‘insulin stacking’ or having done early evening exercise – both of which can increase the risk of low blood sugar episodes known as hypoglycaemic attacks or “hypos”.

1 – Continuous glucose sensor monitors blood sugar level

2 – Data transmitted for the computer programme to work out insulin dose

3 – Insulin pump delivers the dose

Overall, the results showed the artificial pancreas kept blood glucose levels in the normal range for 60% of the time, compared with 40% for the continuous pump.

And the artificial pancreas halved the time that blood glucose levels fell below 3.9mmol/l – the level considered as mild hypoglycaemia.

It also prevented blood glucose falling below 3.0mmol/l, which is defined as significant hypoglycaemia, compared with nine hypoglycaemia events in the control groups.

Study leader Dr Roman Hovorka said: “This is the first randomised study showing the potential benefit of the artificial pancreas system overnight using commercially-available sensors and pumps.

“Our study provides a stepping stone for testing the system at home.”

Karen Addington, chief executive of Juvenile Diabetes Research Foundation, who funded the research said the study provided “proof of principle” of an artificial pancreas.

“We need to redouble our efforts to move the artificial pancreas from a concept in the clinic to a reality in the home of children and adults with type 1 diabetes.”

Dr Victoria King, research manager at leading health charity Diabetes UK, said: “This is an important step forward in managing overnight blood glucose levels as well as in the eventual development of a full ‘artificial pancreas’ which could vastly improve the quality of life for people with type 1 diabetes and reduce the risk of the associated complications.”

The Fresh Air Fund Needs Host Families For The Summer of 2010!

February 4, 2010

by samedifference1

Posted by request of The Fresh Air Fund:

Host a Child

Thanks to host families who open up their homes for a few weeks each summer, children growing up in New York City’s toughest neighborhoods have experienced the joys of Fresh Air experiences.

Click here to view photos of Fresh Air children leaving Port Authority Bus Terminal on July 2, 2009 to visit their host families!

More than 65% of all children are reinvited to stay with their host family, year after year.

Fresh Air Fund Host Families

There is no such thing as a “typical” host family. If you have room in your home – and your heart – to host a child, you could be one too.

Learn More

Fresh Air Fund Children

Fresh Air children are boys and girls who live in New York City and are eager to experience the simple pleasures of life outside the city.

Learn More

Host FAQ

Read through our list of frequently asked questions about hosting a child.

Learn More

Inquire About Hosting a Child

Find out who you need to contact, if you are interested in becoming a host.

Learn More

Preparing for a Visit

If you’re a host getting ready for a visit, or just wondering what it might be like to become a host, read on.

Learn More

Friendly Town Volunteers

In every Friendly Town, there is a volunteer committee and chairperson responsible for the program.

Learn More

Community Participation

Friendly Town communities offer assistance and support to Fresh Air children in many important ways.

Learn More

The Fund’s Role

At The Fresh Air Fund’s main office in New York City, a professional staff oversees the activities of Friendly Town volunteers and assists them in their organizational and recruitment efforts.

Learn More

DisAbled Students Wait For Specialist Equipment Grants

February 4, 2010

by samedifference1

Almost 12,500 students in England are still waiting for grants to pay for specialist equipment, figures from the Student Loans Company show.

The statistics reveal two thirds of students with a disability or special needs are still waiting for money.

The figures were obtained by the Conservatives following a Freedom of Information request.

The SLC, which was criticised for its mismanagement of regular student loans, says it is reviewing its processes.

Tens of thousands of students were forced to start the academic year without their full loan and grant entitlement after problems with the processing of applications.

A 10% increase in applications for university places coincided with changes to the way first-time loan applications were dealt with and technical problems.

Students complained of lost personal documents, jammed telephone lines and delays in approval for their loans.

The latest figures show at the end of January some 16,000 English-based students are still waiting for at least some of their money.

A further 2,000, whose claims have been fully processed, are waiting for their first payment.

These delays have had a knock-on effect for students with disabilities, because – in England – disabled students’ allowances (DSAs) are administered by the SLC.

Of the 19,006 eligible DSA applications, only 6,507 have been fully processed and approved by the SLC. This means that, almost four months after term started, only 34% of eligible applications have been processed.

Personal helpers

DSAs are available for all UK students with a disability and are used to buy specialist computer equipment resources such as Braille paper, or to pay for personal helpers to assist on campus.

The allowance is paid in Scotland by the Student Awards Agency for Scotland, in Wales by the Welsh Assembly government through local bodies and in Northern Ireland by the education and library boards.

These figures are truly shocking

David Willetts, Shadow Universities and Skills Secretary

David Gibson is studying for a post-graduate qualification in teaching at the Institute of Education in London and wants to teach geography.

He said he has yet to receive his DSA to cover expenses related to his dyspraxia and dyslexia.

Mr Gibson said the allowance would cover a computer and software to help him with his studies, as well as a mentor to talk to occasionally.

“It is the most stressful time I’ve had in the past 30 years,” he said.

The SLC said the application process for DSAs “took longer than applications for other types of student finance”.

“We are still awaiting information from 5,179 assessment centres and more than 4,297 students, and are processing the remainder of applications as quickly as possible,” a spokesman said.

“We are currently reviewing the process and procedures for targeted students in consultation with relevant organisations and special interest groups and we will also be improving the training of specialist advisers.”

‘Students deserve better’

Shadow universities and skills secretary David Willetts said: “These figures are truly shocking.

“Almost four months after term started, and two months after the government said the problems were being fixed, thousands of disabled students are still waiting for the funding they need to pay for vital equipment.

“Twice as many disabled students have not been paid their grants as have been paid them.

“Ministers are still passing the buck and still failing to deliver. Students deserve better – much better.”

An inquiry into the loans delays led by Professor Sir Deian Hopkin, which reported in December, complained of “conspicuous failures”.

Two managers later left the SLC under a restructuring programme.

DisAbled Adults In Edinburgh Win Carer Campaign

February 4, 2010

by samedifference1

People with disabilities in Edinburgh have won their battle to keep their carers.

The council had proposed putting the services for vulnerable adults out to competitive tendering.

But clients feared they would lose the carers with whom they had built up a relationship, and opted to pay directly for their services.

On Thursday the council is expected to agree to drop the tendering process for social care for vulnerable adults.

Ian Hood, from Learning Disability Alliance Scotland, said they were worried that vulnerable people would not be given the choice over whether or not their services should be changed.

I will be instructing the chief executive to bring forward a full ‘lessons learnt’ report

Jenny Dawe
Council leader

He said: “People had chosen their care with specific organisations, in some cases for 30 years, and they would lose the person they had grown to depend on and trust.”

More than 480 of the 770 vulnerable people who receive support opted for direct payment instead, where they get an allowance to choose the carer they want.

So many opted out of the council scheme that the tendering process was made impossible.

The council is expected to vote against competitive tendering for the coming financial year in social care for vulnerable people, and is likely to agree a ceiling on direct payments.

Members of the finance committee will also consider a report by accountants Deloitte who criticised the tendering process, describing it as “not sufficiently meticulous”.

Best value

Council leader Jenny Dawe said: “I am disappointed that the tender evaluation process appears to have been less than perfect and I will be instructing the chief executive to bring forward a full ‘lessons learnt’ report.”

But the council has not ruled out looking at social care payments for vulnerable people in the future.

Cllr Dawe added: “It is quite clear that the current charging arrangements do not represent best value.

“Some providers are charging twice the rate of others for the same or very similar services.

“If we can achieve the required savings by negotiation then I believe existing service users will feel reassured.”

Vegetative State Patients Can Communicate

February 4, 2010

by samedifference1

At long last, some sensitive scientists have taken the time to prove what I have known all my life, thanks to my close friends and their parents’ methods of communication with them. If you take some time and have some patience and understanding, it is very possible to communicate with people who are too severely disabled to speak. Like anyone who can speak, they have an ability to make choices, which they just need to be allowed to express.

I would like to thank the researchers for carrying out the study. I sincerely hope that this study raises awareness of this very important issue. This is real progress for an often ignored, but usually extremely intelligent, group of people.

Rod Liddle’s Views On Disability

February 3, 2010

by samedifference1

I used to read the Independent once a week for a journalism class when I was at university. After leaving university, however, I discovered Comment Is Free and developed a close friendship with all things Guardian. So I forgot all about the Independent.

Until all the good journalists and bloggers on my Facebook list joined a Facebook group titled “If Rod Liddle Becomes Editor Of The Independent, I Will Not Buy It Again.”

The more I learnt about Rod Liddle, his actions and his views, the happier I was that I, too, have joined this group- and the more I realised that I would never read any newspaper that had a person with such views as its editor. He’s racist to ethnic minorities and abusive to women- both attitudes I can’t stand.

Thanks to the Facebook group, I have now discovered that Rod Liddle is disablist as well as everything else. I’m now even more glad to be supporting the campaign to prevent him becoming editor of the Independent. I am writing this post to urge all those of you who have an interest in journalism in the UK to join the group and support the campaign, if you haven’t already.

In my opinion, the only organisation Rod Liddle should be joining is the BNP. I sincerely suggest that he should consider becoming a member of this ‘political party.’

Sign The Petition To Help DisAbled Models Hit The High Street

February 3, 2010

by samedifference1

Dear Readers,

In celebration of the end of How To Look Good Naked With A Difference yesterday, I thought I’d ask you to sign their petition to get more DisAbled models shown in mainstream adverts. I already have- so please sign it if you agree that we, too, can look good naked! Thanks.

“We the undersigned petition high street retailers in the UK to involve disabled models in their advertising campaigns”

http://www.ipetitions.com/petition/htlgn/

Lancet Retracts MMR Study

February 2, 2010

by samedifference1

The medical journal which originally published the discredited research linking autism and MMR has now issued a full retraction of the paper.

The Lancet said it now accepted claims made by the researchers were “false”.

It comes after Dr Andrew Wakefield, the lead researcher in the 1998 paper, was ruled last week to have broken research rules by the General Medical Council.

The publication caused vaccination rates to plummet, resulting in a rise in measles.

The Lancet had already issued a partial retraction.

THE WAKEFIELD STORY

MMR is the combined measles, mumps and rubella vaccine which was introduced in the late 1980s

In 1998 the Lancet published a study, led by Dr Andrew Wakefield, which linked the jab with autism and bowel disease

It has since been discredited by medical experts

A newspaper subsequently made allegations about the way the research was carried out

The GMC launched an investigation and ruled he had broken research rules and acted unethically

In 2004, editors argued they had been right to publish it as the journal was there to “raise new ideas”.

But they accepted that in hindsight they may not have been, after accusations of a conflict of interest – Dr Wakefield was in the pay of solicitors who were acting for parents who believed their children had been harmed by MMR.

But this move goes further by accepting the research was fundamentally flawed because of a lack of ethical approval and the way the children’s illnesses were presented.

The statement added: “We fully retract this paper from the published record.”

Last week, the GMC ruled that Dr Wakefield had shown a “callous disregard” for children and acted “dishonestly” while he carried out his research. It will decide later whether to strike him off the medical register.

The regulator only looked at how he acted during the research, not whether the findings were right or wrong – although they have been widely discredited by medical experts across the world in the years since publication.

After the hearing, Dr Wakefield, who now lives and works in the US, said the findings were “unjust and unfounded”.

Professor Adam Finn, a leading paediatrician based at the University of Bristol Medical School, said: “This is not before time. Let’s hope this will do something to re-establish the good reputation of this excellent vaccine.

“And I hope the country can now draw a line under this particular health scare and move onto new opportunities for vaccination.”

Beatrix Potter’s Characters Remodelled For Blind Children

February 1, 2010

by samedifference1

I think this is a brilliant idea, and am pleased that the artist has shown such sensitivity and understanding.

In 107 years, since the illustrated characters of Beatrix Potter were first copyrighted, very few people have been licensed to use their images for commercial enterprises, and absolutely no-one has ever been allowed to redesign the iconic drawing.

So what’s different about Colin Antwis, from Mold, in Flintshire?

After six months of negotiations with Chorion, the worldwide merchandising agent for Beatrix Potter, the former civil engineer and part-time artist has secured the rights to remodel Potter’s instantly recognisable characters, so that totally blind children can enjoy them for the first time.

He said: “My background was in making buildings accessible to people with various disabilities, and part of that involved creating tactile diagrams of floor plans and emergency routes for visually-impaired people.

The feedback I’ve had from visually impaired children has been really good

Colin Antwis

“My other love was sketching animals and countryside, so I imagine it was inevitable that the two were going to collide at some stage.

“I wouldn’t be so arrogant to presume that I could improve on Beatrix Potter’s designs, but the problem in making them tactile was that a lot of the drawings are extremely subtle and intricate.

“In order to translate their magic to people who were exploring them by touch, I had to retrace them to make the lines stronger and more defined, as well as taking away some of the more fiddly detail.

POTTER FACTFILE

Writer and illustrator Beatrix Potter was born in London in 1866 and fell in love with the Lake District on family holidays

In 1902, The Tale of Peter Rabbit published, nine years after it was written

Potter published a total of 22 books over 28 years

Her success meant Potter went onto to become a major landowner in the Lake District, with 15 farms and more than 4,000 acres of land

Potter died in 1943, leaving her land and flock of sheep to the National Trust

Her life was made into a film in 2006, Miss Potter starring Renée Zellweger

Source: Peter Rabbit.com

“That was the tough thing to explain to Chorion. I didn’t want to alter Potter’s drawings, simply to translate them into an understandable form, in the same way as the text of the books have been translated into over 20 languages.”

‘Life in 3D’

Colin adapted Potter’s work by re-sketching them in thick black pen on a form of heat-sensitive paper, manufactured by a photography company in nearby Chester. When he warms his drawings the fibres fluff up, in the same way as scrambled eggs expand when cooked – and the darker and thicker the colour, the more it will rise off the paper.

“The end result is a kind of relief pattern, which really brings the characters to life in 3D. The impression is so striking that I’ve started using it in all my work, not just in the adapted pictures for blind people.”

“The feedback I’ve had from visually impaired children has been really good. The books have been available in Braille since 1921 – and whilst I’m sure that the readers have been conjuring up their own fantastic pictures in their imaginations for generations – now for the first time they can experience Peter Rabbit and company in the form which Beatrix Potter intended all those years ago.”

Colin’s relief drawings have only been available via his own website for a month, but such is the demand that he’s now considering trying to have them distributed in the RNIB’s online shop.

It’s undoubtedly a success story which Beatrix Potter herself would smile upon, as her own artistic career was severely limited by failing eyesight after the 1920s.

The current contract runs for two years, and if it’s successful, Colin hasn’t ruled out trying his hand at adapting other seminal children’s authors, including Cardiff-born Roald Dahl.

‘The Twits’

“Beatrix herself spent around 20 years dreaming up and sketching her characters, so I’ve got my work cut out if I’m going to do them justice in just two years.

“But if I’m happy with the end result, and there’s a demand for them, then perhaps I’ll cast the net wider.

“Dahl is an exciting prospect, just imagine The Twits or the Omperlompers brought into relief in 3D, the possibilities are endless!”

Alice Joyce

February 1, 2010

by samedifference1

A girl who was starved of oxygen at birth and suffered severe brain damage, has been awarded £5.6m compensation.

Buckinghamshire Hospitals NHS Trust admitted responsibility for Alice Joyce’s disabilities.

She was starved of oxygen during her mother’s labour at Wycombe General Hospital in High Wycombe in March 1996, the High Court heard.

The payout will provide Alice with the 24-hour care, equipment, therapy and accommodation throughout her life.

She has been diagnosed as having spastic quadriplegic cerebral palsy and delayed mental development.

Happy girl

Her parents Chris and Carolyn Joyce, of Aylesbury, Buckinghamshire, made the High Court claim for compensation.

The NHS Trust admitted liability and apologised for the standard of care provided to Mrs Joyce and her daughter.

Describing his daughter as a “happy, sociable” girl, Mr Joyce said the compensation would ensure that Alice was looked after for the rest of her life.

“It is so sad she will never have a normal life and do all the things we take for granted,” he said.

“The NHS continues to pay out considerable sums in these cases.

“Isn’t it time lessons were learnt so other people would not have to go through this devastating heartache?”

Mrs Joyce had had a caesarean section delivery with her previous child, but was not warned of the risk of rupture of the womb should she have a normal delivery with a second child.

‘Learn from mistakes’

If she had been warned of this risk she would have chosen to have a caesarean delivery again and avoided the risk of labour, the court heard.

Instead, she had a normal delivery and Alice was born in a very poor condition and not breathing.

Mrs Joyce suffered a massive haemorrhage and had to be resuscitated.

The trust’s chief nurse and director of patient care standards, Sarah Watson-Fisher, said: “We would like to express our sincere apologies to Alice and her family for the errors in the care given at the time of her birth in 1996.

“We take matters like this very seriously and are committed to learning from our mistakes.

“We hope that the settlement will be of great assistance to Alice and we offer her and her family our best wishes for the future.”

Panorama Poll Suggests Support For Assisted Suicide

January 31, 2010

by samedifference1

Almost three-quarters of people support assisted suicide for someone who is terminally ill, a BBC poll suggests.

However if the illness is painful and incurable, but not fatal, then backing falls to slightly under half.

The survey of just over 1,000 people was carried out for Monday’s edition of BBC One’s Panorama programme.

It features Kay Gilderdale who was cleared last week of attempting to murder her daughter Lynn, who had the chronic fatigue syndrome ME.

Ms Gilderdale admitted aiding and abetting the suicide of her 31-year-old daughter and was given a 12-month conditional discharge.

Lynn was found dead at their home on 4 December 2008.

The survey found that 73% of those asked believed that friends or relatives should be able to assist in the suicide of a loved one who is terminally ill.

But, if – as in the case of Ms Gilderdale’s daughter – the illness is not terminal, support for assisted suicide falls to 48%.

‘At peace’

Lynn was bedridden by the age of 15, and was admitted to hospital more than 50 times with a succession of serious illnesses over the next 16 years.

Ms Gilderdale told the programme: “I know I did the right thing for Lynn. She’s free and at peace where she needed to be. Whatever the consequences, I would do it again.”

The survey was carried out earlier this month and the figures are broadly in line with previous surveys.

Last year, the Director of Public Prosecutions issued guidelines on when assisted suicide cases should be taken to court.

But campaigners have said there still needs to be more clarity in the law.

Panorama: I Helped My Daughter to Die is on BBC One on Monday 1 February at 2030 GMT.

Supermarket Parking Limits Breach Disability Laws

January 30, 2010

by samedifference1

The UK’s big supermarkets are breaking disability laws by having strict time limits in about two-thirds of their car parks, charities have told the BBC.

Private firms run some of the parking areas for Tesco, Asda, Sainsbury’s and Morrisons and customers face penalty charges for overstaying.

But under the Disability Discrimination Act, businesses need to make extra allowances for disabled people.

The supermarkets say they will review their policies on disabled parking.

Supermarkets are increasingly using private parking firms and automatic number plate recognition systems to limit customer parking, often to two hours.

‘Acknowledge problem’

The restrictions are to discourage drivers from abusing the free parking spaces.

A survey for BBC Breakfast – which contacted 200 different large supermarkets from the four main chains, and spoke to 124 – suggests about two-thirds of the car parks that impose time limits do not give disabled people any extra time to shop, which is a breach of the law.

Britain’s motorists are being stealth taxed by another dubious practice

Neil Herron

Motorist campaigner

Neil Coyle, from the charity Disability Alliance, said: “Supermarkets need to acknowledge there is a problem, and secondly, very quickly they need to ensure their car parking procedures conform with the law.

“You or I can stamp our feet and say how outrageous it is but at the end of the day there is a law that protects disabled people from this happening.”

He said the supermarkets needed to end the “unfair charges” or “they can wait until someone takes a legal case and potentially face a considerable compensation case”.

Motorist campaigner Neil Herron said supermarkets should get rid of the “draconian” and “legally questionable” private enforcement process and handle car parking in house.

“If someone is abusing the system, clamp them, charge them a £2.50 clamp release fee, handled by their own staff.

“Britain’s motorists are being stealth taxed by another dubious practice,” he said.

The BBC’s Keith Doyle said all four supermarket chains have said they will review their policies on disabled parking.

“If you do need extra time, the advice is to go to customer services in the supermarkets – they have all told us they will make allowances, they will review their policies – so give customer services your registration number and hopefully you won’t get a ticket,” he said.

Maybe DisAbled shoppers should just shop online!

Lynn Gilderdale’s Legacy To ME

January 29, 2010

by samedifference1

The day she was diagnosed with ME, Lynn Gilderdale would not have felt doomed. She would not have believed it to be a death sentence. She would not even have imagined the dreadful excuse for a young life that lay ahead. She would, with tragic irony, probably have been happy. Her family would, too.

She would have welcomed confirmation of the illness because, on diagnosis, the initial feeling is relief. Relief that finally there is a name for what is wrong with you; relief that there is at last an end to those dreadful, debilitating, demoralising trips to the GP which are met with little more than well-intentioned bafflement.

Diagnosis represents a conclusion to those random referrals to specialists who are valued experts in illnesses that are not yours; consultations that promise hope but lead only down blind alleys.

Diagnosis at last lifts the demeaning suspicion that, deep down, everyone thinks you are mad, or acting up, or delusional. That you could feel better if you really wanted to. That it is all in your mind.

You may suspect personal experience here, and you would be right. My wife, Deborah, has ME. Not like Lynn Gilderdale had it. There was a ferociousness in Lynn’s symptoms, as recalled by her mother, Kay, that would be unrecognisable even to many sufferers, but few ME cases present alike.

Deborah never lost the will to live, but her illness was serious enough to be life-changing and to be diagnosed and treated by a specialist. I remember the day he did that. I was working at Cheltenham races and she phoned to tell me. We were so happy.

It is often the time preceding diagnosis when the damage is done. Myalgic encephalomyelitis hides by kicking up every old virus lying dormant in your body. Deborah felt ill and tired constantly.

And she kept getting chickenpox. I know: that’s what the doctors said. Yes, it looks like chickenpox, Mrs Samuel, but it can’t be chickenpox because you say you’ve already had it and you can get it only once.

And then the tests would come back and, well, dear me, this is most unusual, Mrs Samuel, but it is showing that you had the chickenpox infection. And glandular fever.

Imagine that five or six times with no clue why. Imagine telling the same story over and over, to the same incomprehension. Imagine being treated as a dermatological case, a psychological case, a viral case.

Imagine undergoing every test and finding nothing conclusive until you are at your wits’ end. Imagine a day when your GP, a thoroughly decent man, says: ‘Unless you’ve got any ideas, Mrs Samuel, I really don’t know what to do.’

And then, by luck, an article in a newspaper gives you just an inkling of what is wrong. You find a specialist doctor and get a diagnosis. Imagine being on a waiting list for months, being told you have a chronic, incurable disease and wanting to punch the air with joy that your problem now has a name, a method of treatment and a doctor who doesn’t think you’re just a bit low and your symptoms are psychosomatic. That is how it feels to be diagnosed with ME.

So, of course, there is a mental side to the illness, as the sceptical suggest. If you feel sick and tired every day, it gets you down. If you do not know why, it makes you miserable. If you think nobody believes you, it makes you sad. That is an effect, though, not the cause.

The cause is myalgic encephalomyelitis, and it is a neurological illness, believed to be triggered by viral ailments affecting the brain stem. That is why it presents differently from case to case, that is why it kicks up old infections: such as chickenpox.

And because conventional medicine shunned ME sufferers for so long, it is what leaves them open to quack alternative practitioners, furthering the falsehood that it is some bogus ailment, the preserve of people with too much time on their hands: the yuppie flu of popular myth. And it’s called ME.

ME. Get it? They are all self-obsessed, these people. They just need to get over it. Incredible, really, that the perception of a disease should be governed by its abbreviated form. That was Lynn Gilderdale’s problem: damned by acronym.

The fact is, some people do recover better than others; some people can roll with it. Deborah’s ME has never been as serious as Lynn Gilderdale’s. It is manageable. Who knows why? No two sufferers will have the same symptoms, so every plan of action is different, too.

Ordeal: Kay Gilderdale, who helped her daughter to die, leaves Lewes Crown Court after a jury acquitted her of attempted murder

Deborah’s doctor recommended a yoga class to help blood flow to the brain. She used to wrap up warm because the hall was cold. There was another patient there who would attend in a T-shirt and sandals because she felt hot constantly, even in mid-winter.

Some think it helps to set goals; others believe targets are dangerous. The fact is, we don’t know.

Certain aspects of the illness can be approached from a psychological perspective because if you feel unwell all the time, if you are by necessity forced into constant evaluation of your physical health, you are going to be depressed; but that does not make it a disease of the mind.

If the death of Lynn Gilderdale, and the crass court ordeal of her mother, achieves one positive, it is that in the past few days, there has been genuine sympathy towards ME sufferers, not the usual outpouring of halfbaked, spiteful, theories. And Lynn donated her body to ME research in the hope it would offer some clues. Like that first happy day of diagnosis, it is not much: but it is a start.

MMR Scare Doctor Acted Unethically, Panel Finds

January 28, 2010

by samedifference1

The doctor who first suggested a link between MMR vaccinations and autism acted unethically, the official medical regulator has found.

Dr Andrew Wakefield’s 1998 Lancet study prompted one of the biggest health scares for years.

It caused vaccination rates to plummet, resulting in a rise in measles – but the findings were later discredited.

The General Medical Council said he had acted “dishonestly and irresponsibly” in carrying out his research.

The GMC case did not investigate whether Dr Wakefield’s findings were right or wrong, instead it was focused on the methods of research.

During the two-and-a-half years of hearings – one of the longest in the regulator’s history – he was accused of a series of charges.

‘Invasive tests’

It was alleged he carried out invasive tests on children which were against their best clinical interests and paid children £5 for blood samples at his son’s birthday party.

The panel looking into the allegations said the case was proven on both counts.

In regards to the blood tests it ruled he had acted with “callous disregard for the pain they might suffer”.

The GMC now has to consider whether Dr Wakefield’s behaviour amounts to serious professional misconduct and then if any sanctions should be imposed, such as striking him off the medical register.

However, that ruling is not expected for some months.

Actress Zelda Rubinstein Dies

January 28, 2010

by samedifference1

Zelda Rubinstein, the US actress best known for her role as the diminutive psychic in 1982 film Poltergeist, has died in Los Angeles at the age of 76.

The 4ft 3in (1.29m) actress died in hospital on Wednesday after recently suffering a heart attack, her agent told the Los Angeles Times.

Eccentric medium Tangina Barrons was her first major role and one she reprised in two Poltergeist sequels.

More recently, Rubinstein appeared in Southland Tales and TV’s Picket Fences.

She also appeared in a high-profile Aids public awareness campaign in the 1980s and was an outspoken activist for the rights of people of restricted height.

Haunted house

Born in Pittsburgh in 1933, the former lab technician was almost 50 when she made her big-screen debut as a woman playing a Munchkin in The Wizard of Oz in 1982’s Under the Rainbow.

Poltergeist followed, in which her character came to the assistance of a suburban family living in a haunted house.

Fans will remember her child-like voice exhorting spirits to “go into the light” before declaring “this house is clean”.

She went on to appear with Molly Ringwald in Sixteen Candles, before returning as Tangina in Poltergeist II: The Other Side and Poltergeist III.

Rubinstein was sent to hospital at Cedars-Sinai Medical Center two months ago, after suffering a mild heart attack.

“She had ongoing health issues and unfortunately they finally overtook her,” her agent Eric Stevens said.

MMR Scare Doctor To Be Given Verdict On Research

January 28, 2010

by samedifference1

The doctor who first suggested the link between MMR vaccinations and autism is to hear whether he is guilty of unethical research practices.

Dr Andrew Wakefield’s 1998 Lancet study prompted one of the biggest health scares for years.

It caused vaccination rates to plummet, resulting in a rise in measles – but the findings have now been discredited.

However, the General Medical Council case has focused on how he carried out his research – which he stands by.

During the two-and-a-half year series of hearings – the longest in the regulator’s history – Dr Wakefield was accused of dishonesty and poor standards.

‘Invasive tests’

It was alleged he carried out invasive tests on children which were against their best clinical interests and paid children £5 for blood samples at his son’s birthday party.

The GMC also heard that he failed to declare a conflict of interest as he was said to have been in the pay of solicitors acting for parents who believed their children had been harmed by MMR.

THE WAKEFIELD STORY

MMR is the combined measles, mumps and rubella vaccine which was introduced in the late 1980s

In 1998 the Lancet published a study, led by Dr Andrew Wakefield, which linked the jab with autism and bowel disease

It has since been discredited and the Lancet has said it should not have run it

A newspaper subsequently made allegations about the way the research was carried out

The GMC launched an investigation, which then led to a series of charges and the two-and-a-half-year hearing

If the case is proven against Dr Wakefield, who now works and lives in the US, the GMC will then consider whether he is guilty of serious professional misconduct and if he should be struck off the medical register. However, that ruling is not expected for some months.

Dr Wakefield’s case has been heard alongside those of two former colleagues, Professor John Walker-Smith and Professor Simon Murch.

They worked with Dr Wakefield at London’s Royal Free Hospital at the time and were among the 13 authors of the study.

All three have denied the charges of professional misconduct.

Welsh NHS Fails Muscular Dystrophy Patients

January 27, 2010

by samedifference1

A man whose legs have seized due to a lack of physiotherapy has spent the last 11 years sleeping in a wheelchair, Welsh politicians will be told.

Leighton Thomas, who is in his 40s and from Neath, has the muscle disease muscular dystrophy.

His father Ray will tell a cross-party group of AMs, who are working on plans to improve sufferers’ lives, that his son has been let down by the NHS.

The assembly government said work was continuing to improve services.

Families of other sufferers will give evidence to the Welsh cross party group for muscular dystrophy at the Senedd in Cardiff on Wednesday.

The meeting will hear how one boy relies on his school dinner lady for physiotherapy, and how other patients have to buy their own wheelchairs because of lengthy waiting times.

He (Leighton) has been really let down by the health services in Wales

Ray Thomas

The muscular dystrophy group will eventually draw up recommendations aimed at improving and prolonging the lives of patients.

The Muscular Dystrophy Campaign said unlike in England, Scotland and Northern Ireland, Wales did not have a regional care adviser who can help sufferers with home adaptations, equipment grants and coordinating care and treatment.

The charity said Welsh families had to go as far afield as London for basic advice and support.

Ray Thomas, from Neath, said his son Leighton, who has Duchenne muscular dystrophy, a life-limiting condition that causes his muscles to waste away, had spent the past 11 years sleeping in his wheelchair.

Leighton has been forced to do this because his body has stiffened due to a lack of physiotherapy.

Ray Thomas said: “His knees have locked and he can’t straighten his legs.

“There’s a huge concern from everybody at the moment as to how we’re going to get Leighton out of his wheelchair. His muscles and tendons have shortened so much that it’s too late for him, he’s in his 40s now.

Leighton Thomas has slept in his wheelchair for 11 years

“He has been really let down by the health services in Wales.”

Jack Price, six, from Swansea, also has Duchenne muscular dystrophy.

His father Shaun said the lack of physiotherapy available in Wales means they have had to resort to physiotherapy from the dinner lady at Jack’s school.

Mr Price said: “We were told we should be doing Jack’s physio but we were having trouble because Jack wouldn’t let us.

“The school dinner lady is also his personal assistant, so the physio came into school and showed her how to do the exercises.

“I would prefer it if she had been trained in physiotherapy because if she’s not doing the exercises quite right, she could be doing more damage than good.

“I’ve got no qualifications in physio and neither has the dinner lady – so if it’s the case that it’s acceptable for us to do it then why do we even have physiotherapists?”

Dr Dai Lloyd AM who chairs the cross party group said he was “shocked” that muscle disease patients and their families had to “put up with such poor healthcare in Wales”.

He added: “It is unacceptable that anyone should have to travel to England for healthcare that we should be providing in Wales, and I fully support these families in their campaign to improve health services for Welsh muscle disease patients.

“I hope the cross party group can help to change this situation.”

More than 70,000 babies, children and adults in the UK have muscular dystrophy or a related condition.

A further 350,000 people are affected indirectly as family, friends or carers.

A spokesman for the assembly government said: “The Health Minister, Edwina Hart, is well aware of the difficult issues around health services for people with neuromuscular conditions and has taken action to improve the care and support to individuals living with these conditions and their families.

“We have been working with the Muscular Dystrophy Campaign on this.”

These stories are some of the saddest I’ve ever heard. I know from personal experience the need for physiotherapy when a DisAbility leads to stiffness, so I completely agree with everything these parents have said. Your comments are very welcome, as always.

Details of Dancing on Wheels

January 27, 2010

by samedifference1

From here:

Singer Heather Small, gold medallist Mark Foster and actress Michelle Gayle are among the celebrities that will be dancing with wheelchair users in a groundbreaking new six-part series for BBC Three uniting wheelchair users and celebrities in a dance competition with a difference.

The lead choreographer for the show is Brian Fortuna, a professional ballroom dancer who appeared in the last series of Strictly Come Dancing and who has been teaching wheelchair dancing for the last eight years, will be putting the couples through their paces.

A panel of judges – presenter and Paralympian, Ade Adepitan, and Strictly Come Dancing’s professional dancers, James and Ola Jordan – will decide each week which couples stay in the competition.

Also taking part are actor Kevin Sacre, rugby legend Martin Offiah and presenter Caroline Flack all of whom are set to partner wheelchair users who have never danced before – with only five weeks to master everything from the cha-cha to the paso doble.

The wheelchair users are: Simone, a 22-year-old Cambridge graduate; Diana, a 48-year-old magazine editor and mother; 27-year-old Carolyne, who enjoys nothing more than a night out; James, a cocky 31-year-old whose impressive acrobatic ability puts most able-bodied people to shame; Paul, a 24-year-old festival-goer who is looking forward to Glastonbury this summer; and 23-year-old Harris, who recently got married to a girl he met whilst travelling in Thailand.

They will all be learning the art of Wheelchair Dance Sport, a popular international sport where at least one dancer is a wheelchair user.

Wheelchair Dance Sport is practised widely by athletes in 22 countries, with competitions and championships held across the world.

In Dancing On Wheels (working title), the couples will be compete in the “combi” event where a standing able-bodied dancer partners a wheelchair user.

The winning couple will go on to represent the UK at the Wheelchair Dance Sport European Championships in Israel this autumn.

Danny Cohen, Controller, BBC Three, says: “This is a really important project for BBC Three, and underlines our commitment to covering disability in a mainstream way following the success of Britain’s Missing Top Model last year. The series will be surprising, fun and glamorous.”

Under the guidance of Brian and some of the other top names in dance, the couples will be trained intensively each week to compete in a variety of exhausting and challenging dance disciplines as they battle for supremacy.

The judges will then select the two strongest couples who will get the chance to take part in a final dance-off, before a winning couple is chosen to represent Britain in the European Championships in October 2009.

Dancing On Wheels will be made by Fever Media.

David Mortimer, Managing Director at Fever, says: “We’re so excited to be back in business with BBC Three and can’t wait to launch our search to find Britain’s best new wheelchair dance talent.

“Wheelchair Dance Sport is every bit as graceful, glamorous and entertaining as regular ballroom, so we can all look forward to some amazing action.”

The series was ordered by Harry Lansdown, BBC Three’s new Commissioning Editor for Features, Formats and Specialist Factual.

The executive producer for Fever Media is David Tibballs.

The programme will be shown later this year.

Rhiannon Hayman

January 26, 2010

by samedifference1

A teenager who was left profoundly disabled at birth is to receive £6.5m.

Rhiannon Hayman, 15, of Bridgend, has severe cerebral palsy, is unable to talk or walk without help and requires round-the-clock care.

ABM University Health Board apologised at the High Court for failures by the former Bro Morgannwg NHS Trust in the management of her mother’s labour.

She sustained her injuries after being starved of oxygen during her birth at Bridgend’s Princess of Wales Hospital.

At a hearing, the Abertawe Bro Morgannwg University Local Health Board agreed to pay a settlement including a £2m lump sum and periodical payments to fund her care needs for the rest of her life.

She is a remarkable young lady and one cannot help but be moved

Mr Justice Owen

Approving the settlement, High Court judge Mr Justice Owen paid tribute to Rhiannon and her family, including parents Suthathip and David and siblings Becky and Rhys.

“I would like to pay my own tribute to the whole family, but to Mrs Hayman in particular because it is she who has borne the heaviest burden and I know how difficult it has been at times,” he said.

“I am deeply impressed by everything I have read about Rhiannon.

“She is a remarkable young lady and one cannot help but be moved by the positive attitude to life, the sheer zest for life, that shines out of the reports, despite the grievous misfortune she suffered at her birth.

Breach birth

“The settlement means that her financial future is secure.”

Lawyers for the family had been set to argue in a full High Court trial that the hospital failed to provide a “reasonable standard of care” to both Mrs Hayman and Rhiannon.

Rhiannon was born on 4 November, 1994 in the breach position – feet first – after a delay in delivery. This led to a period of asphyxia, resulting in severe brain damage.

Paul Rees QC, for the health board, offered an “unreserved apology” to Rhiannon, who appeared in court.

Speaking after the hearing, Mrs Hayman said the effect of her daughter’s disability had been “devastating” on the entire family.

24-hour care

“Money cannot change what has happened to Rhiannon. However, we hope that it will fund her complex needs for many years to come,” she said.

“No amount of money will compensate for the fact that she will be unable to lead a normal life like her brother and sister, go out by herself, leave home and live independently and start a family of her own.

“Rhiannon is a very focused, intelligent, happy and sociable girl.

“She loves playing with her brother and sister and listening to different types of music.

“Rhiannon lives her life to the full and the money she is going to receive will help give her the life she deserves.

“As a family, we are relieved that this compensation will enable her to find the equipment, living costs and 24-hour care which she will need for the rest of her life.”

ABM University Health Board offered its “unreserved apologies” to the family for the failures by the former Bro Morgannwg NHS Trust in the management of Mrs Hayman’s labour.

“We would like to give our reassurances that we strive to learn lessons from events such as these and that our highest priority is patient safety,” said a statement.

“Sadly, there is nothing the health board can now do to change the very regrettable outcome of Rhiannon’s birth, but we hope the settlement will enable her to receive the ongoing care she needs.”

Kay Gilderdale Not Guilty Of Murder Of Daughter Lynn

January 25, 2010

by samedifference1

A mother has been found not guilty of the attempted murder of her severely ill daughter who had ME.

Bridget Kathleen Gilderdale, 55, of Stonegate, East Sussex, was cleared of attempting to murder Lynn Gilderdale by jurors at Lewes Crown Court.

Gilderdale had previously admitted aiding and abetting the suicide of her 31-year-old daughter and was given a 12-month conditional discharge.

Miss Gilderdale was found dead at their home on 4 December.

‘Caring mother’

After the jury had delivered its verdict, Mr Justice Bean said: “I do not normally comment on the verdicts of juries but in this case their decision, if I may say so, shows common sense, decency and humanity which makes jury trials so important in a case of this kind.

“There is no dispute that you were a caring and loving mother and that you considered that you were acting in the best interests of your daughter.”

Earlier prosecutor Sally Howes was asked by Mr Justice Bean “why it was considered to be in the public interest” to pursue Gilderdale on the attempted murder charge when she had pleaded guilty to aiding and abetting suicide.

AT THE SCENE

Bryony Mackenzie, BBC South East, Lewes

As the not guilty verdict was read out close friends and family of Bridget Gilderdale shouted “Yes” and cheered.

Gilderdale, know as Kay, smiled and said: “Thank you, thank you”.

The judge then turned to the jury and said: “I do not normally comment on the verdicts of juries but in this case their decision shows common sense, decency and humanity.”

The judge then told Gilderdale: “Your daughter was intelligent and capable of making her own decisions. She had made a living will and contemplated suicide.

“You and your husband Richard, respected her for it but did not encourage her. You only took any further action when you were concerned she would suffer.”

Ms Howes said the prosecution decided at “the highest level” to try Gilderdale after she told her GP and police she had given her daughter an air embolism with the intent to end her life.

Following the trial Gilderdale’s son, Steve, read out a statement on the steps of the court flanked by his mother and father, which praised the verdict.

He said: “We believe this not guilty verdict properly reflects the selfless actions my mother took on finding that Lynn had decided to take her own life, to make her daughter’s final moments as peaceful and painless as possible.

“These actions exhibit the same qualities of dedication, love and care that mum demonstrated throughout the 17 years of Lynn’s illness.

“I’m very proud of her and I hope she will be afforded the peace that she deserves to rebuild her life and finally grieve for the death of her daughter.”

Jurors were told that after Miss Gilderdale made a failed suicide bid her mother crushed up pills with a pestle and mortar and fed them to her through her nasal tube, handed her morphine and injected three syringes of air into her vein.

Lynn Gilderdale developed ME at the age of 14

The court was told the 55-year-old tried to stop her daughter ending her life but backed down after she told her: “I want the pain to go.”

Jurors heard she was a loving and devoted mother who gave round-the-clock care during Miss Gilderdale’s 17-year battle with ME.

After developing the illness at the age of 14, Miss Gilderdale became paralysed and unable to swallow so she had to be fed through a tube and communicated with her parents through a form of sign language.

The court was told she had attempted suicide in the past, placed a Do Not Resuscitate note on her medical records and had thought about ending her life at Swiss-based assisted suicide clinic Dignitas.

Mr Justice Bean asked prosecutor Sally Howes “why it was considered to be in the public interest” to pursue Gilderdale on the attempted murder charge when she had pleaded guilty to aiding and abetting suicide.

There is no sense of success or failure in this case, but we are satisfied that our role in the justice process has been fulfilled

Det Supt Andy Griffiths

Sarah Wootton, chief executive of charity Dignity in Dying, said the law made little distinction between the act of murder, euthanasia, assisted dying and assisted suicide.

She added: “Given that Lynn Gilderdale was mentally competent, made persistent requests to die and had an Advance Decision stating that she did not want to be kept alive, it seems that [Bridget] Kay Gilderdale’s actions should have been investigated under the Suicide Act, rather than under murder law.

“Ultimately, the government needs to review the law in this area, as this case highlights at present the law is a mess.”

Sussex Police Det Supt Andy Griffiths said: “This has been a tragic and desperately sad case for all concerned and our thoughts are with Lynn’s family and friends at this time.”

He added: “The moral issues surrounding the tragic circumstances of Lynn’s death are not for us to comment on. Sussex Police has a duty to uphold the law and investigate offences reported to us.

“There is no sense of success or failure in this case, but we are satisfied that our role in the justice process has been fulfilled.”

Brian McKeever Makes Olympic History

January 25, 2010

by samedifference1

Blind skier Brian McKeever has become the first man to be picked for a Winter Olympics and a Paralympics in the same year as he was named in Canada’s team.

The four-time Paralympic gold medallist won an able-bodied 50km cross-country race last month to ensure his eligibility for Canada’s Olympic team.

He has Stargardt’s disease and has less than 10% vision – all of it peripheral.

As a Paralympian the 30-year-old McKeever has a guide, but as an able-bodied skier he will race alone.

McKeever’s guide is his elder brother Robin, who was a member of the 1998 Olympic team and finished eighth in Tuesday’s race.

The younger McKeever began skiing at the age of 13 before he started losing his sight aged 19 .

606: DEBATE

Have your say on the Winter Olympics

In the last two Paralympics the two brothers won two golds and a silver in Salt Lake City in 2002 and repeated the feat in Torino with gold in the 5km and 10km and silver in the 20km, also adding a bronze in the biathlon.

“It’s important for people to know the Paralympics is as high as it gets,” said McKeever, who after racing for Canada in next month’s Vancouver Games, will then compete in the Paralympic Winter Games in March.

“It’s the Olympic Games for people with physical disabilities and I hope people will realise through my story the gap is not that big.

“Just because somebody has a disability doesn’t mean they are not training hard or are extremely fit.

“I think the Paralympics is a great product. We have something worth watching and I hope my story will bring more attention to that.”

Three years ago, Brian finished 21st in an able-bodied men’s 15km race at the 2007 World Championships.

Five athletes – all in summer sports – have competed in the Paralympics and Olympics – South African swimmer Natalie du Toit, American runner Marla Runyan, Polish table tennis player Natalia Partyka, Italian archer Paola Fantato and New Zealand archer Neroli Fairhall.

Drug Trial Offers Hope For Brittle Bone Disease Children

January 24, 2010

by samedifference1

Luke Hall was still in the womb when he had his first fracture – by the time he was a teenager he had more than 40.

Luke, from Leeds, has the brittle bone disease osteogenesis imperfecta (OI) and was diagnosed when his mother Dorothy was three months pregnant.

She said: “When I went for my first scan they noticed that there was a problem.

“He had actually fractured his leg while I was carrying him.

“When he was first crawling he had a lot of fractures. He tried to grab furniture and would bang himself and fracture his legs.

“He mostly fractures his legs, but has damaged other limbs and breaks fingers or toes every other month.”

He has lived with it a long time so can be sensible and he does understand his limitations

Dorothy Hall

Now a new trial has discovered that a drug used to treat osteoporosis in adults can reduce the number of fractures suffered by affected children like Luke.

Professor Nick Bishop, an expert in brittle bones based at Sheffield Children’s Hospital, has found that risedronate can increase bone mass and reduce deformities.

More than 50 children took part in a trial, which established that a weekly dose of just 2mg could reduce the fracture risk – making it an easier and cheaper alternative to existing drugs for less severe cases.

OSTEOGENESIS IMPERFECTA

Osteogenesis Imperfecta (OI) is a genetic condition present from birth

It affects one in 5,000 children and there are about 14 new cases a year

Severe cases can expect between 200-300 fractures in a lifetime, if untreated

“We wanted to see whether we could reduce admissions and all of the children had fewer fractures,” he said.

“It’s taken us seven years to find out but this is a big step forward, as it helps us to tell what is best for the patient.”

He said that those with more severe OI, babies or adolescents at the end of their period of growth, would be better off using the intravenous drug pamidronate.

Energy boost

Dorothy Hall said that the risedronate had also helped to increase Luke’s energy levels.

Prof Bishop concurred that children on the trial were also generally happier.

“The drug made them feel better in themselves.

“Parents tell us that their child has more energy when on the treatment, and are happier, not so grumpy.”

Prof Nick Bishop says the trial has led to a big step forward

Mrs Hall said Luke was remaining on the drug and that, although scans showed his bones are thicker, he is still at risk.

“He has lived with it a long time so can be sensible and he does understand his limitations,” she said.

“It is easier now than when he was a child.

“There are things he can’t do.

“Until he was 13 he played for a football team.

“He understood why he could not continue, because as the children got bigger the risk of breaking something grew.

And although an arm and a leg are quite simple to deal with if he injured his spine there would be no road back.”

Jane Tadman, from the Arthritis Research Campaign, which funded the clinical trial, said: “Brittle bone disease is a serious, if rare condition which can ruin the lives of affected children, so we hope that Professor Bishop’s work will have a profound impact on the way it is treated, and enable many more youngsters to lead more normal, active lives.”

Mother Says She Would Have Faced Death Penalty To End Disabled Son’s Life

January 23, 2010

by samedifference1

The mother convicted of murdering her severely disabled son after giving him a lethal shot of heroin has said she would have been prepared to face the death penalty to stop his suffering.

Frances Inglis, 57, was given a life sentence and told she must spend a minimum of nine years in jail after being found guilty of killing her 22-year-old son, Tom, who suffered severe head injuries when he fell out of a moving ambulance.

In a phone call to her family from Bronzefield prison in Middlesex which was related to the Daily Mirror, she said: “Being in prison is nothing compared to what Tom was going through. If I had to face the death penalty to put him out of his suffering, I would still have done it. Parents should do anything for their children.”

She added: “I just am thankful to my family for supporting me. I was expecting to be convicted and I expected to go to prison.

Tom Inglis, whose mother, Frances, was found guilty of murder after giving him a lethal heroin dose Undated photo of Tom Inglis. Photograph: Hertfordshire police/PA

“I knew what I was doing when I ended Tom’s suffering. But this way, I’ve got a life sentence rather than Tom.”

Inglis, of Dagenham, east London, insisted throughout the two-week trial that she was innocent because she had killed her son out of love, not malice.

Tom Inglis was left severely brain-damaged after a road accident in July 2007, and his mother believed he was locked in a “living hell” with no hope of recovery.

Giving evidence, the mother-of-three maintained that, as far as she was concerned, her son’s life ended on 7 July 2007 when he fell out of the ambulance. He had been injured in a fight outside a pub and suffered the head injuries in Romford on the way to hospital.

Police said they understood he was being taken to hospital against his wishes and that the ambulance door opened three times.

The head injuries were so serious that his mother said she believed he would never lead a normal life again.

She told the court that when she injected him with heroin 16 months later as he lay in a care home, mute and in need of 24-hour care, she didn’t feel it was murder. She was releasing him, she said.

He had not spoken since the accident, nor communicated in any way beyond squeezing his mother’s hand, but Inglis said she felt certain he was in constant pain and would have no wish to continue living like that.

After researching her son’s condition on the internet, Inglis said she decided to end his misery in the most painless way she could: a drug overdose. Not knowing any drug dealers, she started hanging around places she knew drugs were sold – outside a local station, outside the jobcentre and needle exchanges – until she managed to buy the 2 grams her internet research told her would be enough to kill.

Outside court her older son Alex, 26, said he and his family supported his mother “100%” and demanded a change in the law on mercy killing.

He told the Mirror: “We’re devastated she’s being punished for ending his life humanely. Tom was always really, really independent. He always said, ‘Don’t make a fuss’. Being in that state, he would have hated it.”

Experts Warn Of Struggle Ahead For Haiti’s Amputees

January 23, 2010

by samedifference1

Prosthetic organisations and charities worldwide have warned of the huge task facing Haiti as it struggles to rehabilitate hundreds of thousands of amputees resulting from the island’s earthquake.

Doctors say they are already struggling to cope with the sheer numbers of people needing amputations after being trapped in rubble.

Some surgeons estimate that as many as 200,000 Haitians will end up losing one or more limbs – in a country where the few rehabilitation facilities that existed before the earthquake have largely been destroyed.

And in a country where an estimated 800,000 people were already living with disability before the disaster struck, meeting all the needs of the amputees may be impossible.

Dominic Hannett, director of clinical services at Opcare, a private company that provides prosthetic services to the NHS, says many more amputations will be carried out over the coming days and weeks because of potentially fatal infections in people, who had initially fairly minor wounds or fractures.

They will need to re-equip the rehabilitation centre, find out who out of the staff is still alive and train more people and there are international guidelines on how to do that

Sandra Sexton, University of Strathclyde

And he warned infection will remain a major risk in those who have had surgery to remove parts of or whole limbs.

He said: “It’s fairly common sense but the more someone loses of their limb, the more complex the amputation and prosthesis is going to be – if someone loses a leg at the hip, that’s a massive problem.”

Prosthetic devices need to be fitted as soon as possible after healing to get people mobile and will need refitting in the first few weeks and after that at least once a year, he said.

“Amputation is a life-long rehabilitation – in the UK we still treat amputees from the Second World War because they need ongoing care.”

But limbs are easy to make and the sheet of plastic needed to remould and fit a socket joint on a prosthetic costs as little as £15.

“The requirements for a prosthetics team to set up and fairly simple and local people can be trained to manufacture and provide prosthetics,” he said.

Destroyed services

Sandra Sexton, director of the National Centre for Prosthetics and Orthotics at the University of Strathclyde, said there were some rehabilitation services in Haiti, but like everything else they have been destroyed by the quake which killed 200,000 people, according to some estimates.

Ms Sexton added survival was currently the top priority for medical teams, but once the focus shifted to reconstruction, a vital step will be getting the local rehabilitation services up and running once again.

It is a gigantic and very serious problem and the post-amputation period will be critical in terms of post-operative support, physical therapy and the fitting of prostheses

Eric Doubt, Healing Hands for Haiti

“What we saw after the Pakistan earthquake was the importance of having a co-ordinated approach – it’s about knowing who has had an amputation, and who is undergoing treatment.”

“We know from places that have been in conflict, for example after the Ethiopian civil war, there was a very practical way forward.

“They (aid agencies) built rehab centres in five areas then they trained people up to do local provision but the local population there had not been as devastated as it has in Haiti and it’s going to be a lot more difficult.

“They will need to re-equip the rehabilitation centre, find out who out of the staff is still alive and train more people.”

Ms Sexton stressed the disaster in Haiti was of an “unprecedented” scale.

“This is devastation in a very poor country,” she said. “They had rehabilitation services before but they weren’t even touching the sides and it’s hard to comprehend how to help – they really will need sustained long-term support.”

‘Gigantic problem’

Eric Doubt, executive director of Healing Hands for Haiti – a US-based charity set up 10 years ago to provide rehabilitation for people with disabilities – said three-quarters of their facilities in the country have been destroyed.

The charity is now accelerating plans to open Haiti’s first Physical Medicine and Rehabilitation Institute later this year.

“We have 150 medical specialists, construction crew, translators and volunteers flying out next week,” said Mr Doubt.

“Following that we will be joined by a team of 30 professionals from Handicap International.

“Whether that addresses all of the previous and new needs is highly unlikely, but we’ll be working in conjunction with all the other physical medicine and rehabilitation organisations who will also be setting up operations.”

Kerry Robertson’s Baby Taken Into Care in Ireland

January 23, 2010

by samedifference1

Comments very welcome below, as always. Part of the debate on DisAbility And Parenting.

A couple who fled to Ireland after social workers threatened to remove their baby at birth have had the newborn snatched after all.

Kerry Robertson, 17, who has mild learning difficulties, and Mark McDougall, 25, went on the run after British social services said she was not clever enough to raise a child.

But just four days after Ben was born, Irish social workers marched into the maternity ward and forced them to hand him over.

Proud mother: Kerry Robertson and Ben, who she isn’t allowed to bring up

They were told they were acting at the behest of their British counterparts.

The couple, from Fife, Scotland, have been on the run for three months.

In September, their wedding was halted just 48 hours before the service when social workers claimed Miss Robertson was not bright enough to understand the marriage declaration.

Then in November they were told that her ‘disability’ meant their baby would be taken away at birth.

With Miss Robertson 29 weeks pregnant, they fled their house in the middle of the night and travelled to Ireland.

Ben was born healthy and weighing 7lb 3oz last Friday.

Last night Miss Robertson said: ‘When the Irish social workers said I had to give the baby to them, I felt sick.

‘I didn’t want to hand him over and I started crying because I couldn’t believe what they were saying. I thought I had misunderstood.

‘I had just been breastfeeding him.

Just before they took him away, I told Ben I loved him and gave him a kiss.’

Mr McDougall added: ‘Kerry let out a dreadful cry when she realised what was happening – it was terrible. She is just in pieces.

‘We believed that the Irish had more traditional values than social workers in the UK. We found a two-bedroom cottage in a beautiful village in Waterford overlooking the sea.

A family divided: Father Mark with Kerry and the baby, who is now in foster care

‘Kerry booked herself in with the local GP and at last we began to feel as if we were safe.’

An anonymous benefactor has been funding the couple after they left home with just £200, and has even paid for the house.

Artist Mr McDougall has also been selling pictures while friends and family have donated clothes, baby gear and further money.

Miss Robertson has been cared for by her grandmother since the age of nine months after her own parents were unable to look after her, with her care overseen by Fife Council.

She began getting contractions last Friday and the couple went to the local hospital, where she gave birth after a natural labour.

‘Both of us were overjoyed,’ said Mr McDougall. ‘Ben was absolutely perfect.’

But on Tuesday morning two Irish social workers – a man and a woman – came to the hospital and delivered the bombshell.

Mr McDougall added: ‘It seems that through Kerry’s medical records – although we have been on the run she has always ensured she had all the checks and scans on the baby – Fife Council had been alerted.

‘The social workers said that now Ben was born, Fife had put him on the at-risk register and he was subject to a care order.

As the social workers told us the news, the two midwives who have been caring for Kerry were so distressed that they fled the room.’

Ben is being cared for by foster parents.

Family law experts said that if Fife had genuine concerns about the baby it had a duty to pursue the couple even once they had fled its jurisdiction.

Under a 1980 European convention on child welfare, they would have contacted the Irish authorities to alert them and the Irish would then have sought an order from a judge allowing them to intervene.

Irish social workers now have to investigate for themselves and have until Monday to make a decision on the case or apply for an extension.

The couple have been allowed to see their son for two hours every other day.

Miss Robertson said: ‘Holding him made me upset all over again. I’ve told the social workers I don’t want him to have bottled milk or a dummy. I feel breastfeeding is so important and at least then he is still having some of me.’

Mr McDougall claimed the care order had the wrong baby’s name on it and the wrong date of birth. He added: ‘Kerry and I are now absolutely furious because we believe our baby has been kidnapped by social services.’

LibDem MP John Hemming, who has been supporting the couple, said: ‘There is no evidence that Mark and Kerry cannot be good parents and I just hope that the Irish authorities can resolve this as quickly as possible.’

The Irish authorities refused to comment last night.

Stephen Moore, executive director of social work at Fife Council, said: ‘I can confirm that although the Robertson family are not presently within Fife, we are committed to working closely with professional colleagues elsewhere to ensure safety and welfare of the child and indeed the whole family as this is of paramount concern to us.

‘I would urge Kerry to use all the support that is being made available to her and her baby and to get appropriate help should she need it.’

Woman Jailed For Faking Son’s Disabilities

January 22, 2010

by samedifference1

I am shocked. She should be banned from having children.

A mother has been jailed for subjecting her son to “enduring” cruelty by pretending he was severely ill, to gain publicity and financial rewards.

The actions of Lisa Hayden-Johnson, 35, from Devon, led to him being operated on, Exeter Crown Court heard.

She also presented him in a wheelchair to the Duchess of Cornwall, appeared on television and spent charity donations.

She was jailed for three years and three months after admitting cruelty and perverting the course of justice.

‘Sadistic fabrication’

The court heard that Hayden-Johnson subjected her son, who is now eight and lives in another part of the country, to a total of 325 medical actions – including being confined to a wheelchair and being fed through a tube in his stomach.

She claimed her son suffered from a long list of illnesses including diabetes, food allergies, cerebral palsy and cystic fibrosis.

Andrew Macfarlane, prosecuting, told the court that Hayden-Johnson’s “sadistic fabrication of non-existent symptoms” amounted to “24-hour-a-day torture”.

It’s often said that the question is whether the defendant is sad, mad or bad. Perhaps the reality in a case of this kind is that it’s a little bit of all of it

Sarah Munro, defending

He said that the boy’s medical treatment meant that the child was socially stigmatised.

As a result of Hayden-Johnson’s actions, the child underwent a series of “physical intrusions and interventions” which included blood tests and intravenous treatments.

Mr Macfarlane said that defendant, who comes from Torbay, achieved national attention as a result of her actions.

The court heard that she frequently described her son “as the most ill child in Britain” and that she amassed cash donations and charity gifts, including two cruises.

Mr Macfarlane added that boy had been “convinced that he was chronically and seriously ill” and said that the long-term effects of what happened to him remain unclear.

‘Disordered and pitiful’

The court was also told that in a bid to avoid a diabetes test arranged for her son in 2007, Hayden-Johnson falsely claimed that she had been sexually assaulted, which later led to her being charged with perverting the course of justice.

Sarah Munro, defending, told the court that her client suffered from a factitious disorder and a factitious disorder by proxy.

The conditions used to be known as Munchausen syndrome and Munchausen syndrome by proxy.

The former can cause sufferers to feign illness to draw attention to themselves and the latter leads to the abuse of another person, again to win sympathy or attention.

Devon and Cornwall police react to sentence

“It’s often said that the question is whether the defendant is sad, mad or bad,” she told the court.

“Perhaps the reality in a case of this kind is that it’s a little bit of all of it.”

Passing sentence, Judge Stephen Wildblood said five adjectives could sum up Hayden-Johnson – “cruel, manipulative, perverse, disordered and pitiful”.

He said: “Your son will have to realise the fact that the one person who is supposed to care for and nourish him throughout his childhood was in fact causing him harm.

“Your experience in custody will be that people who behave with cruelty to children are received in prison as they are in society – with utter rejection.

“Your name and face are well-known throughout the country. You will never be in a position to deceive people in this way again.

“Anyone else thinking of behaving this way should think about your much publicised downfall.”

He also handed her a disqualification order banning her from working with children.

Care Home Firm Fined Over Scalding Death

January 22, 2010

by samedifference1

A care home firm was ordered to pay £145,000 today after a disabled teenager was fatally scalded in a bath.

Paraplegic Yelena Hasselberg-Langley, 18, suffered “excruciating agony” after being lowered into the hot water at a supported living centre in Owens Way, Oxford.

Lifeways Community Care, based in London, which runs the home, admitted health and safety breaches at a hearing last year. Today, the company was fined £100,000 and ordered to pay £45,000 costs at Oxford crown court.

In handing down the fine, Judge Patrick Eccles QC said: “The case evokes a great deal of pity for her suffering and a sense of outrage that her ensuing scalding injury and death could have been easily avoided.

“She was blind, paraplegic, epileptic and severely disabled. She had some power of speech but couldn’t clearly communicate her distress when placed in the bath and she would have suffered excruciating agony before being taken to hospital.”

After the incident, Hasselberg-Langley was taken to the city’s John Radcliffe Hospital before being transferred to a specialist burns unit in East Grinstead.

The hot water left her so badly injured that she died there on 31 August 2007, four days after the accident.

The Health and Safety Executive, which prosecuted the company, said the water was “excessively hot” at more than 44C (111.2F).

Council Gives Assurance Over School Trips

January 22, 2010

by samedifference1

Cancelling a school trip because it did not cater for a disabled child will not set a precedent, a council has said.

The residential trip for about 70 children at Crown Primary in Inverness was abandoned after Highland Council was threatened with legal action.

Education chief Hugh Fraser said mistakes were made by his department in following the correct process under the disability discrimination act.

But he said the council had no option but to cancel the summer trip.

The stay at an outdoor activity centre in the Cairngorms has been held annually for children at Crown Primary.

Lacked foresight

Highland Council cancelled this year’s trip to Craggan last month to avoid legal action after Donna Williamson said her daughter was physically unable to take part in the activities planned.

In a statement, Mr Fraser said the decision did not mean that children would no longer be able to enjoy such opportunities in the future.

He said the school and council officers were now working to ensure that high quality experiences meeting the needs of all pupils would be offered.

Meanwhile, the local authority has distanced itself from criticisms about the way it handled the affair by the Equality and Human Rights Commission which said the decision appeared to “lack planning and foresight”.

Highland Council said the criticisms were not from an official communication to the council, but views contained in an e-mail sent by the commission to a third party.

This post is part of the Inclusion Rules! debate at Same Difference.

How To Look Good Naked- And Why We Need A Difference

January 21, 2010

by samedifference1

In Tuesday’s Guardian, Penny Anderson called Gok Wan’s How To Look Good Naked… With A Difference ‘a move in the right direction.’ This it certainly is- I watched it yesterday (the wonders of Sky+) and was very impressed by two things. The first was Gok Wan’s sensitivity to Tracey, a wheelchair user from Leicestershire, and her needs as a result of her DisAbility. The second was that with the inclusion of the results of his survey on disability and confidence, Gok Wan managed to make the programme as educational to me as it was to any able-bodied viewer. I learned last night that only 17% of wheelchair users are born with their DisAbility, for example- a figure I found surprisingly low, because all the wheelchair users I know were born with their DisAbilities- but also because I hadn’t considered those people born with DisAbilities who don’t use wheelchairs.

Then there are the girls who, as part of the series, are campaigning to get more disabled fashion models into high street stores. What a great idea! One girl said that seeing fashion models in wheelchairs on the high street as a teenage wheelchair user would have helped her. Listening to her made me realise that, of course, this would also have helped my wheelchair-using friends-and me. After all, we wear the same clothes as everyone else, don’t we?

However, Penny Anderson also wonders why disabled women still need to be given their own ‘different’ programme. Let me respond to this by considering why we need differences in other areas of life.

Why do we need the Paralympics? Well, would it really be fair to ask DisAbled athletes to compete with able-bodied athletes in the Olympics? I don’t think so. I know that a few- those who feel able to- have tried to participate in able-bodied Olympic events- and they have done well. It is great that those who have wanted that chance, and asked for it, have been given it. However, every DisAbled athlete cannot handle competing with able bodied athletes, and nor should they be made to try. They do, though, have every right to play the sport of their choice, in an environment where their needs can be fully met- the Paralympics. All they ask is that the Olympics and the Paralympics should take place at the same time, and in this, they have my full agreement and support.

Why do we need special schools? Many of us, including me, wish we didn’t, but the sad fact is, we do. Many DisAbled people have more than enough intelligence to handle the academic work at mainstream schools. I am the first person to say that those who want a mainstream education should be given one. However, every DisAbled student doesn’t want a mainstream education, and even for those who do, life in a mainstream school is not without its problems. In mainstream PE classrooms, for example, we stand out because we’re sitting down. Or we’re followed around by those lifesavers we call Learning Support teachers, who draw or write for us. However, this leads to what able-bodied teenagers call ‘social death.’ Because many of them are too scared of the teacher to come near us. Special schools are full of problems too, but at least in special schools, the students accept each other for who they are, because they know that they are all the same- because someone, somewhere, considers them all different.

Why do people choose only to socialise with others who share their skin colour or religious beliefs? Because they know that, in a place full of people who look the same as them, or believe the same things they believe, they won’t stand out and will be accepted for who they are. Faith schools exist because parents want children to grow up being accepted by people who share their religion and culture. Those who choose to use faith schools don’t want their children to stand out or be in a minority.

Finally, why do we need gay clubs? There is absolutely no reason why gay people can’t socialise in straight nightclubs. However, many people go to nightclubs to find romance. Quite a few long-term relationships start in nightclubs. So a gay person at a straight nightclub who was looking for romance and kept getting rejected wouldn’t have much fun, would they?

The sad fact of life is that, while everyone has every right to socialise, study and play sport with everyone else, human nature means that people who are considered to be different from everyone else form groups when they find others like themselves. Minority groups often choose to stick together. This is often, though not always, the best chance a person considered to belong to a minority group has of finding success.

Disabled women dealing with issues of body confidence, too, find that their particular problems are more likely to be understood, accepted and shared by other disabled women. We know that able-bodied women have their own issues with body confidence, but the sad fact is, we often can’t understand theirs, any more than they can understand ours.

Let’s face facts, Penny Anderson. Disabled women would stand out in the ‘normal’ How To Look Good Naked. Just as wheelchairs would stand out on catwalks filled with straight backs, straight legs and sighted, bright blue eyes. Just as sighted bright blue eyes would stand out on catwalks filled with women wearing dark glasses. No one likes to stand out- but disabled women still want to participate in fashion shows. All we ask for is a corner of your space, be it on a high street, on Channel 4 or at London Fashion Week, and a few minutes of your attention, so that we can all learn from each other.

Cancelled School Trip Criticised By EHRC

January 21, 2010

by samedifference1

A council has been criticised by the equality commission for having had a “lack of planning and foresight” after it cancelled a school’s annual trip.

Highland Council stopped the trip for pupils at Inverness’s Crown Primary because of potential legal action over the exclusion of a disabled child.

The criticism of the council is contained in a document from the Equality and Human Rights Commission.

However, it added the council and school had not done anything unlawful.

The stay at an outdoor activity centre in the Cairngorms has been held annually for children at the city school.

Highland Council cancelled this year’s trip to Craggan last month to avoid legal action after Donna Williamson said her daughter was physically unable to take part in the activities planned.

‘Easiest answer’

In the document seen by BBC Scotland, the EHRC said it needed more information on the case to comment fully.

It went on: “However, there appears to have been a lack of planning and foresight and the council’s approach in scrapping the trip entirely may not have been proportionate.”

The document reads: “What does appear to have happened is that the council felt unable to defend their actions and decided the easiest answer was to withdraw the trip entirely.”

The EHRC said the council’s education director was aware of the steps needed to ensure all pupils felt included, but added that it hoped practice in other schools could be better demonstrated than in this case.

Following the cancellation of the trip, Highland Council said the school had tried hard to meet the needs of the disabled child.

The authority said there was no alternative to cancelling after taking legal advice.

This post is part of the Inclusion Rules! debate at Same Difference.

Hope For MS Pill After Drug Trials

January 21, 2010

by samedifference1

Patients would welcome an oral treatment, doctors say

Oral drugs to treat multiple sclerosis could become available in 2011 after promising results in two trials.

Drug licences have been applied for and the MS Society said it was “great news” for people with MS – current treatments involve injections or infusions.

The trials of the drugs each involved 1,000 people in over 18 countries, the New England Journal of Medicine says.

Cladribine and fingolimod, which come as tablets, cut relapse rates by 50-60% over two years compared with placebos.

Fingolimod was also tested against the widely used injection, beta interferon 1a. The trial showed the new drug was twice as effective in reducing the number of relapses over a year.

The evidence is now there and we will be working with the relevant authorities to make sure those who will benefit can get access

Dr Doug Brown, Biomedical Research Manager at the MS Society

Multiple sclerosis is the most common disabling neurological disorder affecting young adults. It affects more than 100,000 people in the UK and 2.5 million worldwide.

Symptoms include mobility problems, lack of bladder and bowel control and and blurred vision.

The downside of current treatments is that they have to be injected or given by infusion.

MS sufferers have long hoped a pill would be developed. Pharmaceutical companies have been competing to get there first.

More choice

Dr Doug Brown, Biomedical Research Manager at the MS Society, said: “This is great news for people with MS and signifies a shifting tide in the treatment of the condition.

“Availability of oral therapies will give people greater choice and being able to take a tablet instead of unpleasant injections will come as welcome relief.

“The evidence is now there and we will be working with the relevant authorities to make sure those who will benefit can get access.”

Doctors have also welcomed the studies.

Dr Belinda Weller, a consultant neurologist based in Edinburgh who specialises in MS, said the findings are “very significant” and indicated “a big breakthrough”.

“This is the first major advance in MS therapy for a few years,” she said. “I hope the drugs will soon be licensed.”

But she expressed concerns both about possible side effects – which the trials suggested could include an increased risk of herpes and cancer – and that the new drugs could push up the cost of treating MS.

“More patients are likely to want to use these new drugs,” she said. “Some people shun the currently available treatments because of the need to inject. This could put pressure on hospital budgets.”

The MS Society called on the drug companies to price the drugs reasonably.

“The evidence is now here and we hope to see the pharmaceutical companies price these drugs responsibly so they can be made available to people with MS.”

Mother Gets Life For Heroin Death Of DisAbled Son

January 20, 2010

by samedifference1

I haven’t covered this case yet because I was waiting for the final verdict to be decided. So, here it is.

A mother convicted of murdering her disabled son by injecting him with heroin at a Hertfordshire care home has been jailed for life.

Frances Inglis, 57, of Dagenham, Essex, denied murdering Thomas Inglis, 22, on 21 November 2008 and an earlier attempt to kill him on 4 September 2007.

But a jury at the Old Bailey found her guilty of both charges. She must serve a minimum of nine years.

Mr Inglis suffered brain damage when he fell out of an ambulance in July 2007.

The jury reached their verdicts by a majority of 10 to two after deliberating for more than six hours.

‘Tragedy and grief’

There were cries of “shame on you” from the public gallery as the verdicts were read out.

Before the jury went out to deliberate, Judge Brian Barker told them “there is no concept in law of mercy killing” and it is still killing.

Judge Barker said there was no doubt Ms Inglis had tried to take her son’s life in September 2007 and succeeded using an “identical” method 14 months later.

In summing up, the judge said the background of “tragedy and grief” will have struck a chord with all who had heard it.

Frances Inglis said she wanted her son to have a painless death

He said: “It would be extraordinary if we didn’t feel empathy with the family and what Mrs Inglis had to face.”

During the trial Inglis said: “For Tom to live that living hell – I couldn’t leave my child like that.

“I did it with love in my heart, for Tom, so I don’t see it as murder.”

Inglis told the court she had started to research her son’s condition on the internet within days of his accident.

She also claimed she had to beg hospital staff to give him some relief for his “terrible pain”.

Detectives investigating the first incident in September 2007 found notes stored under the stairs at her home in Dagenham, east London, the Old Bailey heard.

Mother driven ‘insane’

One said: “People keep saying Tom isn’t suffering. How do they know? Can they know the terror of knowing you cannot control anything anymore?

“Can they know the agony of being denied pain relief just to see his reaction?”

She later told police: “When I wrote this I was sort of off my head really,” the court heard.

Inglis said she was convinced that the doctor treating her son at Queens Hospital in Romford, Essex, was lying about his chances of recovery.

The jury heard from Inglis’s other son Alex who said his brother’s injuries had driven his mother almost “insane”.

Haiti Doctors Braced For Wave Of Amputations

January 20, 2010

by samedifference1

Doctors treating seriously injured survivors of last week’s 7.0-magnitude earthquake in Haiti say they are having to perform amputations on hundreds of people whose limbs have been crushed or become badly infected.

They say the total could eventually run into the thousands as more badly wounded survivors are rescued and those from isolated areas arrive at the emergency medical centres which have been set up in the capital, Port-au-Prince.

“There are so many people to treat and so many people needing amputations,” said Dr Jacques Lorblanches, a surgeon who is part of a team sent by Medecins du Monde (MDM). “We expect to perform around 400 amputations over the coming days.”

The story is the same elsewhere in the city, with other medical organisations reporting that the majority of operations are ending with amputations.

“There is gangrene everywhere and you amputate on the go,” said Hans Van Dillen of Medecins Sans Frontieres (MSF).

“You conduct radical surgery. There’s nothing more you can do.”

‘Big wave’

In the immediate aftermath of an earthquake, it may be necessary for doctors to carry out a field amputation to extricate a victim from the rubble of a collapsed building or to remove a hopelessly mangled limb.

There is an avalanche of patients and almost all of them come in with traumatic injuries

Dr Olga Maria Delgado

The procedure is considered one of last resort, however, and the vast majority of amputations are carried out later in medical facilities after all attempts to spare a severely injured limb have failed, and to prevent loss of blood and infection.

But in areas where destruction is severe, infrastructure is poor, or there is a widespread lack of available medical care – such as Haiti – even minor injuries to limbs can become life-threatening within days and require amputations.

“You always have a big wave of amputations from around the third day, for about a week afterwards. Then the demand for such surgery becomes less intense,” Susan Wright, the director of Medecins du Monde UK, told the BBC.

“There is a hope that it will shift in the coming week.”

Ms Wright says the longer a person is trapped under rubble or does not receive treatment for their injuries, the more likely it is that they will suffer from crush syndrome – a serious condition resulting from damage to large areas of muscle – or shock, blood loss, dehydration, hypothermia and a weakened immune system.

A woman screams in pain as her infected leg is manipulated by medics at the Centre Hospitalier De La Renaissance in Port-au-Prince

Doctors frequently amputate infected limbs to prevent the onset of sepsis

All of these will reduce the body’s ability to cope with injuries to limbs and to maintain the blood supply. If starved of blood and oxygen, cells and tissues will die, become more vulnerable to infection and may require amputation.

As time passes, the risk of developing a serious infection in a limb directly from even minor injuries such as cuts and grazes also becomes more acute.

Without antibiotics, a person can develop gangrene or blood poisoning, which if untreated can eventually lead to sepsis, the body’s inflammatory response to an infection, and death.

Doctors frequently amputate seriously infected limbs in a last-ditch effort to prevent the onset of sepsis – an all too frequent occurrence in Haiti at present.

“We have had to perform dozens of amputations, including many double amputations. The problem is people haven’t gotten medical care soon enough, so wounds are very infected. Some of them are coming in with bones just sticking out from the rest of the leg,” said Dr Diana Lardy of the International Medical Corps.

‘Full of larvae’

Under normal circumstances, a patient undergoing an amputation would be anaesthetised, and the bone would be sawn through with an oscillating saw. The procedure would be carried out in a sterile theatre to prevent infection.

Jacques Lorblanches with a patient (Photo: Medecins Du Monde)

I did my first amputation with three forceps, five scissors and a scalpel, without water, and just a flashlight to illuminate the injury

Dr Jacques Lorblanches
Medecins du Monde (MDM)

But surgeons in Haiti say they have had to carry out dozens of amputations in unsterile conditions, without electricity or even the correct equipment.

Dr Lorblanches, who worked in Iran after a massive earthquake struck the city of Bam in late 2003, said Haiti was the worst disaster he had ever seen.

“I have never seen anything like this – infected wounds full of larvae,” he said.

“I did my first amputation with three forceps, five scissors and a scalpel, without water, and just a flashlight to illuminate the injury.”

Cuban medic Dr Olga Maria Delgado said she and her colleagues had performed more than 40 amputations on a tiled counter inside a tin-roofed building within the grounds of the Renaissance Hospital in Port-au-Prince. Sterility was less of an issue than normal, because most of the wounds were already infected, she added.

“There is an avalanche of patients and almost all of them come in with traumatic injuries,” Dr Delgado said.

Ms Wright said MDM’s clinics were also being inundated as more people were rescued and others found out where treatment was available, with more than a hundred people waiting for surgery.

“Every time we look out of the window, there’s a queue around the block,” she said.

But even once they have lost a limb, the lack of sterile equipment and antibiotics mean the new amputees face a struggle to stay alive.

Canadian Paralympian Reid Switches To GB

January 20, 2010

by samedifference1

Canadian Paralympic athlete Stefanie Reid has switched allegiances to Great Britain and will aim for a place on the GB team for the 2012 Paralympics.

The 25-year-old became a below the knee amputee when she lost her foot in a boating accident aged 16.

She won a bronze medal in the T44 200m at the Beijing Paralympics and is also an accomplished long jumper.

Reid, who was born in New Zealand, is eligible to compete for GB as both of her parents are British.

Reid, who is married to Canadian wheelchair racer Brent Lakatos, will continue to live in Dallas but will train regularly in Great Britain and work closely with Lee Valley Performance Centre Director Dan Pfaff ahead of the 2012 Games.

She said: “UKA has committed to excellence in both Paralympic and Olympic programmes with facilities, coaching and support to back it up.

“I am excited to experience being part of the home team in London 2012, ironically I will have a larger cheer in the crowd here than where I grew up as all my extended family is British!”

UKA Paralympic head coach Peter Eriksson said: “I have known Stefanie for some time as I previously worked with her husband Brent before coming to the UK.

“It is great for the UK that she will compete for us – we currently do not have any athlete in her class at that level but I am sure her presence will inspire developing athletes.

“She has the potential win two medals in London and I know she will make a great addition to the team.”

ME Daughter Attempted Suicide Before, Dad Tells Court

January 19, 2010

by samedifference1

The father of a bed-ridden girl whose mother helped her to die says his daughter had attempted suicide before.

Richard Gilderdale was speaking at the trial at Lewes Crown Court of his ex-wife Bridget Kathleen Gilderdale, of Stonegate, East Sussex.

She is accused of the attempted murder of their 31-year-old daughter, Lynn, who suffered from ME (Myalgic Encephalomyelitis) on 4 December, 2008.

Mrs Gilderdale denies attempted murder but admits aiding and abetting suicide.

‘Unwavering support’

Mr Gilderdale, a former police officer, described his daughter’s quality of life as “less than poor”.

After developing the debilitating illness at 14 she became paralysed and unable to swallow, meaning she had to be fed through a tube.

Mr Gilderdale said during the 17 years of his daughter’s illness both he and his ex-wife had given her “unwavering support”.

He said “We have always stood side by side for Lynn and we continued right to the very end.

“Lynn always regarded us a team, that’s how she addressed us.”

Lynn Gilderdale had suffered from ME for about 17 years

He explained how his daughter had developed a fear of hospitals following a “catalogue” of errors during her treatment.

In 2005 she had to be placed on life support after her lung was punctured during a procedure to change her intravenous catheter.

She had also claimed she was sexually abused by a senior health professional at a London hospital – something which was being investigated by the Metropolitan Police at the time of her death.

Crushed tablets

Mr Gilderdale told the court that his daughter attempted to kill herself with a morphine overdose in mid-2007 and had contacted Dignitas, the Swiss-based assisted dying clinic.

Earlier the prosecution told the court how Mrs Gilderdale gave her daughter two syringes of morphine at 0300 GMT on 3 December, which Miss Gilderdale administered herself through an intravenous catheter directly into her vein.

Mrs Gilderdale then searched the house for tablets which she crushed with a pestle and mortar and administered through a feeding tube in Miss Gilderdale’s nose.

Later at about 0200 GMT on 4 December, Mrs Gilderdale gave her daughter two or three doses of morphine directly into the intravenous catheter and later gave her three syringes of air.

Miss Gilderdale died at 0710 GMT. A post-mortem examination found that the cause of death was morphine toxicity.

The case continues.

Website Answers Questions About Young People And Epilepsy

January 19, 2010

by samedifference1

I’ve just received this press release:

Four young people from Devon who live with epilepsy have become ITV Fixers to share their experiences in a website for others like them.

Epilepsy affects nearly half a million people in the UK, with young people among the most affected – yet until now there has been no web resource aimed specifically at this age group. This has all changed with the launch of http://www.youthepilepsy.com.

The website was the idea of Sarah Williams, aged 21 from Exeter, who was frustrated by the lack of epilepsy information designed with young people in mind. She says:

“When I was younger I wasn’t told what was wrong with me, and health professionals were talking to my parents and not me – the most important person. I had to learn as I got older what epilepsy actually is. I don’t want other young people with epilepsy to have to battle their way to the answers of the questions they might have about the condition – I was confused and isolated.”

Sarah took her idea to ITV Fixers with vinspired.com, a media campaign which gives a voice to 16-25 year olds who want to make a difference. Sarah, working with three other Fixers from Devon, who also have varying degrees of epilepsy, created the website with expert advice from Epilepsy Action.

This website carries information for young people to understand and come to terms with what Sarah calls ‘the big E’. From the different types of epilepsy out there, to possible triggers, useful contacts, personal stories and a quiz. The personal stories include Steve, from Exeter, whose first epileptic fits were mistaken by first aiders as alcohol-induced; and Paul, also from Exeter, who writes about how he finds it hard not to be able to go clubbing with this friends due to his condition.

The website is just the first step for Fixer Sarah. She says: “I plan to take my Youth Epilepsy support campaign as far as I possibly can. My ultimate goal is to run a charity based organisation for young people with epilepsy.”

The other young Fixers involved with the project are Laura Daniel, 23, from Plymouth, and Steve Lovell, 22, and Paul Gregory, 20, both from Exeter.

ITV Fixers with vinspired.com is a major campaign giving young people between the ages of 16-25 the opportunity to tackle any issue that they feel strongly about. What they choose to do is up to them as long as it benefits at least one other person.

Margo Horsley, executive producer for ITV Fixers, says: “Fixers are young people setting the agenda and changing stereotypes. We want to give young people the chance to decide what they want to do, develop their own projects, and give them a little bit of help if needed. I’ve seen how energetic and committed they are when what they’re doing means something to them. What we’re seeing has really made me question whether young people deserve such a bad press.”

Terry Ryall, chief executive officer of v, the National Young Volunteers Service, says: “We are delighted to be supporting ITV Fixers which gives a high media profile platform to young people’s views, ideas and projects. The campaign is innovative in the way it taps into the things young people care about and the media they feel confident using. ITV Fixers is helping them develop valuable skills, whilst transforming their communities and improving understanding between older and younger generations.”

ME Sufferer’s Mother Admits Aiding And Abetting Daughter’s Suicide

January 18, 2010

by samedifference1

A mother helped end the life of her bed-bound daughter by handing her two syringes of morphine, a court heard.

Bridget Kathleen Gilderdale, 55, of Stonegate, East Sussex, is accused of the attempted murder of her 31-year-old daughter, Lynn on 4 December, 2008.

Lynn Gilderdale developed the debilitating illness ME (Myalgic Encephalopathy) aged 14.

Mrs Gilderdale denies attempted murder at Lewes Crown Court but admits aiding and abetting suicide.

Miss Gilderdale’s illness left her bed-bound and unable to swallow, meaning she was fed through a tube.

Prosecutor Sally Howes QC told the court Mrs Gilderdale spoke to her daughter for about an hour, telling her it was “not the right time” but Miss Gilderdale insisted it was time for her “to go”.

Crushed tablets

She said at about 0300 GMT on 3 December Mrs Gilderdale gave her daughter two syringes of morphine, which Miss Gilderdale administered herself through an intravenous catheter directly into her vein.

Ms Howes said: “At about 6am, Kay felt that the morphine had not achieved Lynn’s aim of killing herself and so Kay searched the house for tablets.”

Lynn Gilderdale had suffered from ME for about 17 years

The court was told the tablets were crushed with a pestle and mortar and administered through a feeding tube in Miss Gilderdale’s nose.

Later at about 0200 GMT on 4 December, Mrs Gilderdale gave her daughter two or three doses of morphine directly into the intravenous catheter and later gave her three syringes of air.

Ms Howes said Mrs Gilderdale telephoned the assisted suicide organisation Exit in the hope of gaining further advice before giving Miss Gilderdale a further eight tablets.

Miss Gilderdale died at 0710 GMT. A post-mortem examination found that the cause of death was morphine toxicity.

Ms Howes said: “It is the prosecution’s case that when Mrs Gilderdale realised that the two large doses of morphine that she provided to Lynn, that Lynn self-administered to try to end her life… instead of then realising that her daughter’s suicide had gone horribly wrong, she then set about, over the next 30 hours, in performing actions which were designed with no other intention other than terminating her daughter’s life.

“The further morphine, the further cocktail of drugs, the injecting of air – all designed to terminate her daughter’s life. It wasn’t done to make her better, it was done to make sure she died.”

The case continues.

EHRC Says Airport Body Scanners Risk Right To Privacy For DisAbled Travellers

January 18, 2010

by samedifference1

The UK’s equality watchdog has written to the home secretary expressing concerns about plans to use body scanners at airports.

The Equality and Human Rights Commission (EHRC) said the devices risked breaching an individual’s right to privacy under the Human Rights Act.

They are being introduced in response to the alleged attempt to blow up an American plane on 25 December.

Ministers have said protecting people’s life and liberty is paramount.

The prime minister has pledged to introduce full body scanners at British airports, and they are due to be in operation at Heathrow Airport by the end of this month.

They produce “naked” images of passengers, and civil rights groups warn they could generate illegal images of children and images of celebrities that could be leaked online.

In response to such fears, the Department of Transport said it was developing a staff code of practice for airport body scanners.

In addition to body scanners, the government is also considering “additional targeted passenger profiling”.

‘Proportionate measures’

In its letter, the EHRC calls on Home Secretary Alan Johnson to set out in detail the justification for bringing in body scanners, and clarify what safeguards will be put in place.

The watchdog has said the proposals are likely to have a negative impact on privacy, especially in relation to certain groups such as disabled people, the elderly, children and the transgendered community.

It also wants to see the evidence for the profiling of air passengers.

John Wadham, group director legal at the EHRC, said the commission accepted the government had a responsibility to protect air travellers.

Graphic showing how a ProVision Whole Body Imager, or scanner, works

“The right to life is the ultimate human right and we support the government reviewing security in the light of recent alleged terrorist activity,” he said.

“However, the government needs to ensure that measures to protect this right also take into account the need to be proportionate in its counter-terrorism proposals and ensure that they are justified by evidence and effectiveness.”

Privacy campaigners welcomed the EHRC’s move.

Dylan Sharpe, campaign director of Big Brother Watch, said the government had not considered privacy in its “desperation to be seen to be doing something”.

“They are another intrusion into our privacy in the name of protection, yet we know that they are not fail-safe and could see airport authorities becoming reliant on a deeply flawed method of detection,” he added.

The introduction of body scanners has sparked a wide debate, and even the home secretary has admitted it will not be a “magic bullet”.

Earlier this month, he said: “It is clear that no one measure will be enough to defeat inventive and determined terrorists and there is no single technology which we can guarantee will be 100% effective against such attacks.”

Mr Johnson also told the Commons there was only a 50 to 60% chance that a body scanner would have detected bomb materials allegedly carried by Umar Farouk Abdulmutallab.

He said the government would be “mindful of civil liberties concerns but conscious of our overriding obligations to protect people’s life and liberty”.

Mr Abdulmutallab is accused of trying to detonate a bomb on a flight from Amsterdam as it was about to land in Detroit.

Concern Over Adult ADHD Treatment

January 17, 2010

by samedifference1

Adults with attention deficit hyperactivity disorder (ADHD) are struggling to access treatment because of a lack of services, figures suggest.

Prescriptions for drugs to treat the condition fall off significantly in 15-21 year olds, a study has shown.

It suggests that some adults who would benefit from treatment are not getting it, the NHS-funded researchers said.

The government said there were efforts to improve the transition between child and adult mental health services.

Treatment for ADHD in adolescents and young adults is not clear cut, said study leader Professor Ian Wong, from the School of Pharmacy at the University of London.

It was quite clear when we interviewed clinicians that it’s a real problem

Professor Ian Wong, study lead

But there is increasing evidence to suggest that the condition, which is associated with inattention and impulsiveness, does not just affect children as was once believed.

Prof Wong said it had been unclear what proportion of young people continue treatment as they get older and the reason for them not taking medication if they stop.

Using data from a large GP database, the researchers found that in 15-21 year olds there is a large drop in those still on the drugs, which include Ritalin.

The figures showed that this decline in prescribing was greater than the reported decline in symptoms – suggesting that people were no longer taking medication when they still had problems.

Access to care

A series of interviews with patients and doctors highlighted that although some patients felt they no longer needed treatment, others wanted it but had difficulty accessing specialist services once they had been discharged from paediatric care.

“The results of our study suggest there is a possibility that treatment is prematurely discontinued in some young adults,” says Professor Wong.

“For some, they are still having symptoms but they can’t get hold of treatments.

“It was quite clear when we interviewed clinicians that it’s a real problem.”

National guidelines published in 2008 say drugs should be only used for children and young people with severe ADHD, and it should be in addition to psychological and behavioural interventions.

A Department of Health spokesman said: “The transition from child and adolescent mental health services to adult services is a critical point for young people with complex mental health needs including those with ADHD.

“The government is developing support to help young people’s and adult services improve these transitions to ensure that both the processes and the models of care meet the needs of young people and their families.”

Text Reminder To Take Epilepsy Tablets

January 17, 2010

by samedifference1

Ben Davey needs to take 20 tablets of four different types each day – so it is no surprise that sometimes he forgets them.

But forgetting can have serious consequences for the 34-year-old Londoner.

Ben has epilepsy and forgetting to take his pills can cause him to have a seizure.

“For many years I have had about three fits a year,” said Ben, who has had epilepsy since puberty.

Fit increase

But when doctors changed his drug regime this year he started getting confused and his seizures increased.

“My fits increased to about 30 this year.

For me taking a tablet is such an important thing. If I could know that I had definitely done that it would be great

Ben Davey

“I don’t want to give the wrong impression that the sole cause of me having a fit was my forgetting, but if I was to forget, the likelihood is I would probably have a fit.

“If I was taking the same tablets every day it would be easier not to forget, but as they were introducing one medication they were fading out another.

“I was thinking ‘I have got to take one less of this coloured one, one more of this coloured one’.”

“I would say, ‘I am going to have a shower and then take my tablet’ and then I would be on the bus and wouldn’t remember whether I had taken them and there was no knowing.”

New service

Now the National Hospital for Neurology and Neurosurgery (NHNN), where Ben is treated, has launched a new service to help patients manage their condition.

The service will use text messaging to remind patients to take their medication and has a facility to alert carers if they do not respond to a text saying they have taken the tablets.

There will also be a web-based patient diary where patients can record their responses to medication, seizures and any injuries sustained during them.

EPILEPSY

More than 450,000 people in the UK have epilepsy (50 million people worldwide)

Epilepsy is three times more common than multiple sclerosis and more than three times as common as Parkinson’s disease and cerebral palsy

One person in 50 will develop epilepsy at some time in their life. One in 20 will have a single epileptic seizure

Anthony Linklater, epilepsy specialist nurse, said that what seemed such a simple idea had taken years to plan.

“In the past hospitals used to just give medication and send people on their way,” he said.

“This is just going one step further and as we are introducing the system we are thinking of different ideas.

“Poor adherence is the main cause of unsuccessful drug treatment.”

Pill routine

Professor John Duncan, Professor of Neurology, agreed:”Most individuals with epilepsy have to take medication regularly in order to achieve the best possible control of their seizures, but remembering to take medication can be problematic for some.

“Taking medication accurately can become quite complicated when it is adjusted as this is usually done in gradual steps over a period of time.

“We hope that the additional support provided by this service will help some people to manage their medication more effectively which could help to improve the control of their epilepsy.”

The NHNN is the first to introduce the system and already has its first few patients signed up for its year-long pilot.

Simon Wigglesworth, deputy chief executive at Epilepsy Action, said he was excited by the potential offered.

“Alerts reminding people to take their anti-epileptic drugs could be effective in ensuring they take their medication accurately and on time.

“An online patient diary could be useful in helping people monitor their epilepsy, and would be particularly valuable for doctors assessing patients with the condition.”

Ben, who plans to sign up early this year, says it will make a big difference to his life.

“The new service would be amazing,” he said.

“You know the feeling when you are just gong to work or the shops and you think, ‘Hang on, did I turn the oven off?’

“For me taking a tablet is such an important thing. If I could know that I had definitely done that it would be great.”

Thalidomide Apology- One Thalidomider Responds

January 16, 2010

by samedifference1

For those who are interested, here’s a response to the government’s recent apology to thalidomiders, sent to Guardian letters by thalidomider Elizabeth Buckle.

BBC News – Making artificial limbs for amputees

January 16, 2010

by samedifference1

Vodpod videos no longer available.

more about “BBC News – Making artificial limbs fo…“, posted with vodpod

For 40 years Alan Tanner has been a craftsman offering a bespoke service. Once he worked in leather and wood but now is more likely to use carbon fibre, aluminium or even titanium.

Thanks to his skill, and technological advances Alan’s prosthetic limbs have helped his clients swim, run, climb mountains – or just achieve the longed-for goal of walking across a room unaided.

He is the first to admit that at the start of his career no-one gave much thought to the idea that people who had an amputation should have limbs made to match their sporting pursuits.

“Back then they just assumed they would not be able to do sport and we did not get much demand for it,” he said.

Sporting limbs

“But today expectation has grown. Limb wearers want to go beyond walking, so limbs have become far more technologically advanced.

“We now regularly get requests to make limbs for running, water sports, climbing and so on.

I get my greatest pleasure just helping these individuals and restoring part of their body image, but also function

Alan Tanner

“But every individual’s goal is equally challenging. For example walking across a room unaided carrying a drink may give an elderly patient a huge sense of achievement.

“The first time I got asked for a pair of legs for swimming was for a 15-year-old lad who came from Vietnam as a refugee.

“He came to the UK wearing a pair of limbs made totally from wood, that were made in Vietnam some years earlier. These limbs of course did not fit and I was asked to make him a more modern pair.

“Then he asked if I could make some waterproof limbs for swimming as he wanted to start scuba-diving, which he subsequently did.

“I designed a pair of short appliances to be worn submerged in water and with fins fitted to the ends.

“I used to take him to Woking swimming baths where he learned to swim again, wearing these special limbs, plus full scuba-diving equipment and wet suit – he looked great doing lengths of the pool underwater!

“I have now got people running on special carbon fibre sprinting legs and we have one doctor who runs regularly 11-15kms (7-10 miles) a week as a below leg amputee and he is over 60 so he is fantastic.

“We have people going in for the New York and London marathons.”

Exciting variety

Alan, who now works for prosthetic firm Blatchfords, based at Charing Cross Hospital, London, said he loves his work and has never wanted to do anything else.

“Each day is different.”

The majority of patients treated by Alan are people who have lost their legs in road accidents or have had them amputated following diabetes or smoking-related diseases.

Alan always tries to ensure patients can be as active as possible

“We start with a profile and work out both their needs in the immediate term and the longer-term goals that they might wish to achieve,” he said.

“We can then build up a picture of what we are going to do for the patient short term and long term and work out the type of limb we are going to make them.”

First Alan, or those he works with, take a plaster cast of the remainder of the limb, or a 3D computer image of it, before making the socket and attaching a limb.

“If someone is in hospital they will be prioritised and we can make their limb in four working days.”

Complicated cases

He said in some cases the limbs were life changing.

“I recently got an email from a GP asking if I would see one of his patients who had been refused limbs from her local limb centre.

“This unfortunate lady had been ‘written off’ at her local centre as a non limb wearer following her second amputation above the knee – and had spent the last two years sitting in a wheelchair, developing a large pressure sore in the process.

“The patient had seen pictures of some of the bilateral amputee soldiers wearing short appliances that I had made.

“This lady had many difficulties, not least having to spend all her time in a chair, giving no relief to her sore areas.

“She subsequently received physiotherapy to improve her core stability and a bespoke pair of SNAPS – short non-articulated pylons – built to match the height of her wheelchair, enabling her to transfer in and out of her chair and to stand for short periods of time.

“These appliances have proved extremely successful for her posture, her pressure sore, her mental state and not least has significantly increased her independence as her husband had previously been lifting her into and out of her chair for the past two years.

“I get my greatest pleasure just helping these individuals and restoring part of their body image and function.”

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Caitlin’s Wish is out now, published by Authorhouse priced at £10.99 ( RRP £14.99) (www.authorhouse.co.uk/bookstore ) ISBN 978149071240

A percentage of the profits from every book sold will be going to Crossroads Care (www.crossroads.org.uk) and the IH Research Foundation (www.ihrfoundation.org)

For more information on Caitlin’s Wish please go to www.caitlinswish.co.uk. Thank You.

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