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Remploy Workers Striking Over Factory Closure Plans

July 19, 2012

Thousands of disabled workers employed at government-run Remploy factories are striking over plans to close at least half of the factories.

Half the Remploy plants, which employ people with disabilities, face closure by the end of the year, while others face an uncertain future or closure next year under government plans. Ministers have argued that they are loss-making, and money would be better spent helping individuals find jobs elsewhere. But unions say it will force vulnerable people out of work.

By 6.50am on Thursday employees were already gathering, waving placards and unfurling protest banners outside the Remploy factory in Barking. “It is not easy for disabled people as vulnerable and frail as we are to make this sort of protest,” said Mark Holloway, who has cerebral palsy and has worked at the factory for 26 years.

“The fact that we’ve been pushed to come out onto the streets, so early in the morning, to take direct action, shows how desperate we are to save our jobs.”

Tony Smales, incapacitated after a fall 13 years ago, leaned heavily on his walkingstick and agreed. A woman with learning difficulties, who asked not to be named, stood apart from her colleagues, shaking – nerves brought on she said by the effort of joining her colleagues in the protest.

Set up after the second world war to provide sheltered employment for disabled servicemen and women, there are 54 Remploy factories across the UK, employing 2,800 disabled people.

The sites cover a variety of enterprises: they make chemical warfare suits for troops in Afghanistan, parts for Jaguar cars, and most of the furniture for Britain’s schools and libraries.

But only a few factories break even. The government spends £320m on its disability employment budget. A significant proportion of that – £68m – is used to subsidise the total losses the sites make each year. On average, each Remploy worker is subsidised by the government by £25,000 a year.

After 18 months of consultations, the coalition has finally concluded that 27 Remploy factories must close, with a further nine subject to further scrutiny. More than 1,700 jobs will be put at risk when the closures start next month. The funding, ministers insist, will achieve more if focussed on individual support to get workers into mainstream employment.

To soften the blow, Remploy workers have been guaranteed tailored, one-on-one support and guidance as part of an £8m package. But the promise has failed to reassure Alan Waddington, who has spent the last 13 years working at Remploy in Barking, where management said losses last year were £1.6m.

Waddington pointed to research by the GMB union revealing that 90% of disabled Remploy workers who took voluntary redundancy 18 months ago under a similar package of support have failed to find work. “It’s not for want of trying,” he said. “But no one wants them.”

It’s not just jobs that have been lost, Waddington added bitterly. “Remploy is a family, a community. It’s protection and support against all the prejudice and discrimination disabled people face in the outside world. They’ve lost all of that too.”

Liam Smith, leader of the Barking and Dagenham council, arrived at the picket site before 7am so that he could make his stand before an 8am council meeting. “It’s disgusting, putting disabled people out of work,” he said. “It’s picking on the most vulnerable but also the most highly-skilled individuals: there’s no sense or savings in it.”

Smith was also sceptical about the government’s promise that workers would find jobs in the mainstream market. He had to implement cuts of £14m from the council’s public spending last year. There are £20m more to come.

“The government says these people will be helped into local employment but where are these jobs?” he said. “A single vacancy in this area can attract 100-plus applicants. I know fit, young people with university degrees who can’t get a job stacking shelves at Tesco. What hope do these disabled people have in that climate?

“Remploy employees could have sat at home all their lives, claiming benefits but instead they’ve taken great pride in triumphing over their disabilities to go to work, pay their taxes and contribute to their local community,” he added. “These people are an asset to our country. We should be proud of them. Instead, we’re condemning them to lives of unemployment and poverty.”

Unite’s national officer, Sally Kosky, said: “We are expecting the vast majority of the workforce across the 54 factories to strike.

“They are rightly angry that they face a bleak future on the dole, as it is always more difficult for those with disabilities to obtain employment. Work and pensions secretary, Iain Duncan Smith, should take a lesson from the Cardiff government, which has shown compassion and practical financial help to keep Remploy workers in jobs for at least four years.”

A Department for Work and Pensions spokesman said: “We’re disappointed that the unions are taking strike action which will do nothing to secure the future jobs of Remploy staff. The government would encourage the trade unions to fully engage with Remploy during the consultation process to provide the best possible support and success for disabled staff who may leave the company.”

A second strike will be held next Thursday.

Archie Anderson

July 19, 2012

A six-year-old Northumberland boy with cerebral palsy who underwent surgery in the US to help him walk unaided is doing well, his family said.

Archie Anderson’s family raised £80,000 to send him to St Louis Children’s Hospital in Missouri in the US Midwest.

The youngster, from Ashington, had selective dorsal rhizotomy which is not widely funded or available in the UK.

Just five weeks after two procedures on his spine and tendons, the youngster is riding his bike.

The operations involved severing the nerves in the spine which cause spasms and pain in the leg muscles.

Before surgery Archie was unable to ride a bike, but his mother Marie said that once she helps him on there is now no stopping him.

‘Running around’

Civil servant Ms Anderson, 40, said: “It would be lovely to think that in a few months’ time he won’t have to wear splints.

“Just to have him running around laughing with his friends would be wonderful.

“We were in America for three weeks and it was scary because obviously the procedures were major.

“The procedure has been performed more than 2,000 times at the St Louis Hospital – so we had confidence in the staff.”

Archie now has to undergo 18 months of intensive physiotherapy to improve his muscle tone.

The procedure is carried out at Leeds General Infirmary but it can take months for patients to be referred and for NHS funding to be approved.

Ms Anderson added: “Archie thinks the physiotherapy exercises are boring but he loves going out on his bike.

“He does the physiotherapy five days a week and so far everything is going according to plan.”

Are People With Autism Drawn To Water?

July 19, 2012

The BBC Ouch blog carried a very interesting post yesterday asking this question:

Against all odds, a missing autistic man was found after three weeks in a remote unforgiving Utah desert last week.

William Martin LaFever, 28, was said to be emaciated and could not stand when he was found sitting in a river 40 miles from where he set out.

It seems that a bit of luck was on LaFever’s side as, when the call went out, it happened that one of the rescue team had recently had some training on finding people with autism, and put the helicopter in just the right place.

The LA Times reported that local deputy Ray Gardner’s training had “taught him that those with autism are naturally drawn to water, so the helicopter search focused on the Escalante River.”

They didn’t expect to find him alive and, judging by his emaciated state, guessed he would not have survived another day.

The notion that autistic people are “drawn to water” has caused a bit of a buzz on autism discussion forums like Wrong Planet.

Pixelpony writes: “I am kind of obsessed with flowing water. Nifty water features and mountain streams are like an on switch for happy. I can stare at them for ages. Even better if I can get down to the water and wade in it, play in it, float things in it, splash in it. Mountain streams are the best though – the water is always cold and clear. Fountains can be good, but they are often warm, which isn’t nearly as good.”

Jediyoda said: “I love waterfalls, running streams when I go 4×4 wheel driving; it’s so soothing and relaxes me. When I was young Mum and Dad used to put me in the bath to settle me down even as I got older and if I have a meltdown I go and have a shower or, if I’m at Mum and Dad’s or my friends’ house, they go fill the bath up and I sit in the bath listening to my music. [In] about half an hour I’m back to normal.”

But Joe90 is confused by the water fascination talk: “I don’t know where they got this from. I’m not drawn to water, I never even drink water. I prefer juice or milk or coke or other drinks like that.”

London-based Robyn Steward trains professionals about autism and is on the spectrum herself. She doesn’t believe that there is a generalised “draw” or love for water in people with autism, but can imagine that some people could be distracted by its look: “There are people on the spectrum who get fixated visually with patterns. For example, people get coins, spin them and sit and stare. Autism affects how visual processing works, there are some who need lots of stimulation as they’re under stimulated.

“I’ve had clients who have refused to have showers, it can feel like being pelted by little golf balls, but they have enjoyed a bath as water isn’t being fired at them. Others might hate it as it could make them feel like they’re on a ship. It’s all sensory.”

The media reports don’t shed further light on the training but Robyn believes it’s unlikely to be related to a survival or innate water-divining instinct, she says: “Water makes patterns, ripples and stuff.”

LaFever was on his way to Page, Arizona. His family suggested he should hitch but he decided to hike along the river and then try to catch a boat. Whether he was drawn to the river as a result of his autism, because he was thirsty or thought it a good navigation aid through the rocky featureless terrain, perhaps isn’t the point. He was, however, very lucky to be found by a police officer who had a plan thanks to recent training.

I know I have several regular readers with knowledge of autism, so I thought I’d open up this discussion here.

Are Paralympians Really Superhuman?

July 19, 2012

Readers, this is Channel 4’s advert for the Paralympics.

It’s much, much better than this one. 

But, readers, the question is, are Paralympians really superhuman? In my personal opinion, Paralympians are just athletes who happen to have disabilities. They are competing in a fair environment where any additional needs they may have are fully met- but that’s the only difference between Paralympians and Olympians.

Paralympians train very, very hard, but name a serious athlete who doesn’t. Sure, Paralympians may need to put in a bit more effort than Olympians. That certainly makes them DisAbled. But superhuman? I think that’s stretching the truth just a bit.

What do you think?

Martyn Sibley’s Epic European Disability Roadtrip

July 19, 2012

A Motability car, an accessible caravan, a wheelchair and a traveller!

Oh, and a map:

 http://www.everlater.com/martynsibley/epic-european-disability-roadtrip

Injured Troops To Be Exempt From PIP Assessments

July 18, 2012

This is good news, and a small piece of progress.

Severely injured soldiers are to be exempted from tough new disability tests as David Cameron moves to ensure that controversial welfare reforms do not apply to the military.

Downing St has persuaded the Ministry of Defence to ensure only the results of existing military tests – covering the most badly wounded troops – will be needed for assessments for the new disability benefits.

Seriously injured troops will also be given a guaranteed disability payment worth around £131 a week under the reforms.

Senior military figures have been protesting that injured personnel would have to take two tests when the personal independence payment (PIP) replaces the disability living allowance (DLA) in April.

The MoD had indicated it would expect all injured troops to undergo the new tests covering PIP claimants in addition to the military tests for the armed forces compensation award.

Officials had feared the MoD would be liable for administering the payouts.

In Camp Bastion, Cameron said: “The reform of DLA will go ahead with a special carve-out for the military so they get a really good deal.”

The Sun was briefed on the change in May. It means troops with serious mental illness, those who have lost both legs or arms, and those with total deafness or blindness, will have to take the military medical test.

A Downing St source said: “The prime minister was very clear when Help for Heroes raised this issue that he wanted to find a solution. He felt it was important to stand by commitments by the military covenant.”

The government will also disregard any payments made to injured veterans when they are being considered for the universal credit benefit, being introduced from April. Income from war pensions will also be disregarded.

Locked In Man Mark Ellis, 22, Walks And Talks Again After Copying Baby Daughter

July 18, 2012

Mark Ellis developed locked-in syndrome – a condition where a patient’s entire body is paralysed but their mind remains active – after suffering a stroke at the age of 22.

The stroke happened just weeks after Mr Ellis’s wife Amy, 32, had given birth to their daughter Lily-Rose, and left him unable to communicate other than by rolling his eyes.

But despite being put into an induced coma and given a slim chance of survival, the patient astounded doctors by swiftly regaining the ability to talk, move and walk after copying his daughter.

Eight months after his stroke Mr Ellis was able to leave hospital and he is now able to talk and even walk with the help of a frame.

Mrs Ellis said: “There wasn’t much time between him and Lola-Rose both taking their first steps – I think Mark took his first steps a week or two after Lola.

“They use toys, books, games and the iPad together to learn how to do things and communicate.

“Doctors didn’t expect him to survive but his youth and mental strength have helped him pull through.”

Mr Ellis, from Clay Cross, Derbyshire, had begun to complain of severe migraines in the days leading up to his stroke but after attending the Chesterfield Royal Hospital A&E department he was sent home with paracetamol.

His wife later called a doctor and Mr Ellis was sent for an MRI scan at Sheffield Hallamshire Hospital, which showed he had suffered a stroke two days previously.

Mrs Ellis said: “He’s young and healthy, [has] never smoked, taken drugs or drunk excessively so it was hard to understand why and how this happened.

“The doctors didn’t expect him to survive. They thought that after his stroke, his heart was going to give up.

“I was asked to sign a consent form to say doctors wouldn’t resuscitate him if this happened.”

A week after being put into a coma Mr Ellis came around, but was only able to communicate with his family by rolling his eyes up for “yes” and down for “no”.

Doctors found he had suffered a blood clot in his brainstem which they described as the worst they had seen in such a young man, and said it was likely he would never be able to walk and talk again.

But after months of intense physiotherapy and speech therapy sessions, Mr Ellis regained the ability to sit up and feed himself.

Medical staff suggested that if he attempted to copy his daughter – who had since begun babbling and making basic sounds – it may help him learn to speak again.

He soon began to make the same sounds, and later progressed to forming meaningful words. By March 2011 he was able to leave hospital using a walking frame.

Mrs Ellis said reading books with his daughter had helped her husband’s speech and that playing games and using her toys had improved his co-ordination.

She said: “I was told not to expect anything from Mark after his stroke so I’m overwhelmed by how well he’s done. Anything and everything he does now is just amazing.”

Dr Srivas Chennu, a neuroscientist at Cambridge University, said: “The fact he has recovered to the extend he can walk home and has recovered his speech is quite remarkable. Some patients recover some movement but would normally still be wheelchair-bound and require assistance when eating, so this is a rare case.”

There is no proven therapy for locked-in patients but some anecdotal evidence does suggest that emotive stimuli, like videos of a patient walking and talking before their injury, can activate areas of the brain linked to movement, Dr Chennu added.

He said: “In this case it seems like – if you believe his wife’s interpretation – the salient influence of his daughter’s recent birth and growing up was strong enough to help him recover.”

Despite her husband’s astonishing recovery, Mrs Ellis added that she supported the family of Tony Nicklinson, who took his fight for the right to die to court last week after seven years of suffering from locked-in syndrome.

She said: “When doctors asked me to sign the form to not resuscitate Mark, I didn’t sign it but I know I would have done.

“We’ve been so lucky that Mark’s pulled through but I can’t imagine what it must be like for him to be of able mind but locked in for seven years.”

Sue Potter, matron for stroke services at Chesterfield Royal Hospital, said: “When Mark came to us, he had been diagnosed with locked-in syndrome which meant he could communicate by blinking, but he couldn’t do anything else.

“We have 400 – 500 people who have had a stroke each year, but never had anyone as young with his condition. His determination and having a young baby have surely contributed to his recovery.”

‘Sexy’ Wheelchair Designed: Twitter Reacts

July 18, 2012

Earlier today, I covered the story of a new ‘sexy’ wheelchair, designed by a wheelchair using designer.

I got a couple of Tweets in response that made me literally laugh out loud. I wanted to share them here to show all those mainstream comedians how to make a real disability related joke.

 

 

Lynette Rowe Wins Thalidomide Compensation

July 18, 2012

An Australian woman leading a class action lawsuit has reached a multi-million settlement with the British distributor of an anti-morning sickness drug that she says caused her birth defects, her lawyer said.

Lynette Rowe, 50, of Melbourne, was born without arms or legs after her mother took the drug thalidomide while pregnant.

Thalidomide was given to pregnant women in the 1950s and 1960s as a treatment for morning sickness, but was removed from the market in 1961 after it was linked to birth defects. It led to deformities in thousands of babies across the world.

Ms Rowe led the Australian class action against three parties – German drug-maker Grunenthal, UK-based Distillers Company (Biochemicals), which sold the drug in Australia, and Diageo Scotland, the successor company to Distillers.

The lawsuit claims Grunenthal should have known thalidomide was linked to birth defects when it was on the market.

Ms Rowe’s lawyer, Peter Gordon, told Victoria Supreme Court his client had reached a settlement with Diageo and Distillers. Grunenthal declined to settle.

Exact terms of the settlement were confidential, but Ms Rowe’s lawyers said it was several million dollars. The lawsuit asked for compensation for the victims’ pain and suffering, lost wages and future medical care.

“This is a great outcome for a wonderful family,” Mr Gordon said. “The amount of the settlement will remain private but I can say it is a multi-million dollar amount and will be sufficient to provide a very good level of care for Lyn for the rest of her life.”

More than 100 others who are part of the class action will also have their claims heard by Diageo, Mr Gordon said. Ms Rowe’s lawyers will ask for the trial against Diageo and the other defendants to be delayed from October until August 2013 to allow the company time to settle the pending claims, Mr Gordon said.

Ms Rowe smiled as she left the court and said she was pleased others harmed by thalidomide would now have the chance to seek compensation from Diageo. “It is great that my case will bring about good things for other people too. It shows you don’t need arms and legs to change the world,” she said in a statement. “Like I always say, see the person, not the disability.”

If It Weren’t For Deaf Children, Wallace And Gromit May Not Exist

July 18, 2012

This very interesting post at BBC Ouch! explains all:

If it weren’t for deaf children, Wallace and Gromit may not exist.

How did I come to this unexpected conclusion? Answer: with a little help from Radio 4’s Britain in a Box broadcast last Saturday and still available on BBC iPlayer.

This series tells the stories behind the making of TV classics, and in the final episode Paul Jackson looks at Vision On, a BBC children’s programme that mixed art, animation, clowning, dangerous stunts and… sign language.

Running from 1964 to 1976, it featured fast-paced visuals and mayhem, not to mention explosions, and was based around creativity and art.

Each programme had a theme such as triangles, circles or black and white. There wasn’t much talking in Vision On, but all words were signed by its main presenter Pat Keysell, a former teacher and deaf-theatre practitioner. It also featured inventor Wilf Lunn, Sylvester McCoy – who went on to be the seventh incarnation of Doctor Who in the mid-1980s – and Tony Hart.

You would be forgiven for not realising that the programme was, initially at least, intended for deaf children. Many young viewers didn’t realise this, but it helped to normalise sign language in Britain and the many countries it was sold to around the world.

Those born after the mid-70s are unlikely to remember it, but will probably recognise the music from The Gallery segment and also the children’s art programmes it spawned. Vision On begat Take Hart. Take Hart begat Hart Beat. Hart Beat begat Smart Hart, which begat On Your Marks and more. Tony Hart continued to present Vision On’s offspring art programmes until 2000.

The animated clips and film sequences shown on Vision On such as The Prof and the Greeblies were contributed by amateur filmmakers. Amongst these were David Sproxton and Peter Lord. Towards the end of Vision On’s run, they pitched a new character to the producers, a superhero called Aardman. Recognise the name?

Aardman Animations, as they became, then created Morph, the fractious little clay man who lived in a pencil box on Tony’s table top in Take Hart. Later came Creature Comforts, Peter Gabriel’s Sledgehammer video, the feature film Chicken Run, and, of course, the much loved Wallace and Gromit.

• Listen to Britain in a Box for more behind the story of the memorable long-running children’s programme and to find out what television offered deaf people before Vision On.

Wheelchair User Designs New ‘Sexy’ Wheelchair

July 18, 2012

A sexy wheelchair? Whatever next!

A disabled designer frustrated by what he saw as limitations with his standard wheelchair was challenged by his wife to create a new “super sexy” version.

Andrew Slorance was paralysed by a spinal injury suffered in a fall from a tree when he was 14.

With his wife Mary, he runs I-Imagine Design in Nairn, in the Highlands.

A BBC Two Scotland documentary, My Perfect Wheelchair, follows the couple’s efforts to create and promote their Carbon Black chair.

In the programme, Mr Slorance, 42, describes the problems he has had with wheelchairs and what he believes to be their lack of appeal.

He said: “I wanted to do something really different, something that was going to make a difference to other people and a difference to me in my own life.”

His wife challenged him to make a chair that was “super sexy looking”.

The documentary follows the couple’s journey in trying to achieving that aim – of coming up with a radically different looking aid for wheelchair users.

The programme sees them encounter manufacturing difficulties, and also BBC Dragons’ Den panelists Deborah Meaden and Richard Farleigh.

A prototype is also damaged just hours before its first public unveiling.

Last year, Highlands and Islands Enterprise (HIE) said badly injured armed forces personnel could be among the users of Carbon Black.

The public agency gave the Slorances £49,700 towards its development.

The design includes LED lights fitted into the frame to resolve a problem of manoeuvring in darkness, a difficulty Mr Slorance has encountered in the past.

My Perfect Wheelchair will be broadcast on BBC Two Scotland on Thursday at 21:00 and for a week afterwards on the iPlayer

More Guardian Coverage For Past Caring

July 17, 2012

Former Test cricketer Winston Davis’s life was, in his own words, turned upside down when he suffered severe spinal injuries in an accident. Now tetraplegic, the one-time Glamorgan, Northamptonshire and West Indies fast bowler needs round-the-clock help from care staff in his home. It is this care package that allows him to maintain his independence and play an active role with disability rights groups in his community in Bewdley, Worcestershire.

“My 24-hour care allows me to live at home. It makes all the difference – it means you can still participate in your community,” he says. “It’s important to hold on to your normality and self-esteem. It’s lovely to live almost a normal life – to go shopping, to have a social life, to go to church, to visit people, to be involved in activities.”

But now Davis fears many could lose the independence he so values, as Worcestershire county council considers plans to cap the amount it pays for care in the home. Under the plans, which the council admits are controversial, payments for under-65s who need care in their home would be benchmarked, as they already are for older people, with the costs of residential care. Disability campaigners fear the move could force people with physical or learning disabilities into care homes against their will – and set a precedent for other councils as they struggle to reconcile squeezed budgets with increasing demands for social care.

Campaign group We Are Spartacus has warned that the proposals fly in the face of government pledges to help people with disabilities to lead independent lives. “Once this has been done in one council, others will follow and it will become a national problem very quickly,” says Sarah Campbell, co-author of a report on the proposals published by We Are Spartacus.

“This is very worrying for the people of Worcestershire and it’s worrying for people across England. We know councils across the country are trying to save money, and if they see Worcestershire getting away with it, all across England we could see people going back into institutions. We know there is no easy solution to the funding gap, but something that leads to people having to go into homes is not acceptable. We are not living in the 1950s.”

Worcestershire county council admits that the proposals, which are still out for consultation and are due to be considered by councillors in September, may mean people would not get their “first choice” about their care. It stresses that the policy would only apply to new service users and to those whose needs are reassessed. It is a reassurance that has not swayed people with disabilities. Campbell, who is disabled, warns: “The moment your costs are above the cap and you are reassessed, your choice will be either make do or go into a home.”

Worcestershire’s consultation does not put a figure on the residential care costs that will be used to benchmark applications for care packages in the community, but We Are Spartacus says in its report that 2009 rates for a care home placement of £411 a week would mean anyone requiring care six to seven hours a day would be affected. It adds that the alternatives laid out by the council, of individuals topping up payments themselves, reducing the care they receive or applying for help from charities, are just not workable.

In last week’s white paper on social care, the government stressed that it was committed to promoting independence and giving people control over the care they receive. But how can that independence and the consistency of care the paper talks of be achieved in these tough economic times? According to Worcestershire’s head of adult social care, Catherine Driscoll, her authority is “absolutely committed” to the principle of choice. But the council has had to make three-year savings, starting last year, of more than £15.2m on adult social care, with more to come.

“We really need to think about how we can start to have a mature conversation with people about the fact that choice isn’t limitless – there is a financial context,” she says. “We know it’s really controversial, and we haven’t done this lightly at all. We are going through a really full consultation at the end of which cabinet members will consider what’s the most effective way of seeking to put some limits on a needs-led volatile budget.”

The most expensive community care package in the county tops £4,400 a week, with a number costing between £1,500 and £3,000. The maximum expenditure policy could, it is estimated, save £200,000 in its first year. The savings figure was reached by the council looking at the 65 people in 2011/12 who were either completely new to adult social care or whose needs had significantly increased. If the capping policy had been in place, savings could be identified in about half the cases (some had needs that were too complex to be met by an alternative). Driscoll insists the cap would not be rigid, but merely a “comparator for what’s reasonable to meet needs”.

“That is different from saying we are going to force people into residential care,” she stresses. “A young person with a learning disability might want to live on their own with 24/7 support. This policy, if it’s approved, would enable us to say, ‘That’s really expensive and more than we can reasonably justify but would you be interested in working with us to identify other people who might want to live independently in a house with you?’ The costs are then shared.”

Worcestershire is not alone in facing some difficult decisions. Driscoll says other councils are looking at increasing eligibility thresholds for care for disabled people – something Worcestershire says it did not want to do – while others are waiting to see how the capping proposals go.

The Association of Directors of Adult Social Services (Adass) points out that £1.89bn has been taken out of English councils’ adult social care budgets over the last two years. So far, the majority of savings have been achieved through efficiencies and “service redesigns” rather than frontline cuts. But Adass warns that authorities will increasingly have to look for new ways of saving money.

“The longer it goes on, the harder it gets,” says Adass president Sarah Pickup. “Everyone has got to look at ways of managing resources. It’s not surprising that we see people doing what some might call difficult things and some might call thinking outside the box.”

Pickup says that without more resources directed to social care nationally, councils are having to try to “muddle through”. “We have no qualms about the shape of service in the [social care] white paper – it paints a picture of the type of services we would like to be delivering in the 21st century. But in a climate of reducing resources, even with the best possible amount of choice, it’s choice within a framework.”

In Worcestershire, service users agree that a national solution is needed. Like Davis, Simon Heng is tetraplegic and requires round-the-clock care in his home, in his case after a benign tumour damaged his spine. He says his care, which costs around £1,500 a week, allows him to lead an independent life, making his own decisions about his care and contributing to the community, including lecturing on disability issues at a university.

“I appreciate the financial pressures and I don’t think Worcestershire can come up with a solution on its own,” he says. “But this is such a retrograde step. It’s the antithesis of promoting independent living. For people like me, what’s the point of [the taxpayer] spending huge amounts of money to save my life and keep me healthy only to give me a life in confinement? If the council decides it would be cheaper to look after me in care home it would be like giving me a prison sentence.”

Local TV Coverage For The Past Caring Report

July 17, 2012

Thanks to the brilliant @latentexistence.

New Charter For People With Learning Disabilities And Autism

July 17, 2012

Who want more control over finances, more independence, and more inclusion.

The Role Of Specialist Learning Disability Nurses

July 17, 2012

How one specialist nurse treats learning disabled people, who are often distressed by hospitals.

Sightseeing Without Sight

July 17, 2012

This is long, but interesting, and well worth a read.

The Man Who Feels No Pain

July 17, 2012

Steven Pete and his brother were born with the rare genetic disorder congenital analgesia. They grew up – in Washington state, US – with a sense of touch but, as he explains in his own words, without ever feeling pain.

It first became apparent to my parents that something was wrong when I was four or five months old.

I began chewing on my tongue while teething. They took me to a paediatrician where I underwent a series of tests.

At first they put a cigarette lighter underneath my foot and waited for my skin to blister. Once they saw that I had no response to that then they began running needles up and down my spine. And since I had no response to either of those tests they came to the conclusion that I had what I have – congenital analgesia.

By which point, I had chewed off about a quarter of my tongue through teething.

We grew up on a farm. My mum and dad tried to be protective without stifling my brother and me. But when you’re out in the country, especially if you’re a boy, you’re going to go out and explore and get in a little mischief.

So during my early childhood I was absent from school a lot due to injury and illness.

There was one time, at the roller-skating rink. I can’t recall all of the details, but I know that I broke my leg. People were pointing at me because my pants were just covered in blood from where the bone came out. After that, I wasn’t allowed to roller skate until I was much older.

When I was five or six years old, I was taken away from my home by child protective services. Someone had reported my parents for child abuse.

I was in the state’s care for, I believe, two months. And during that time I broke my leg before they finally realised that my parents and the paediatrician were telling the truth about my condition.

At school, a lot of children would have questions about my condition. They would ask: “Why do you have a cast on?” Most of the time I was in a cast, until I was around 11 or 12.

I was involved in fights quite frequently. Whenever a new kid came to school, the children would try to get that person to come and pick a fight me, as a kind of introduction to the school. They would say: “If you can’t feel pain, you will once I’m done with you.”

Nowadays, I am not a particularly reckless person. I believe I’m actually more vigilant than most people because I know that if I were to injure myself I wouldn’t know how severe it would be.

Internal injuries are the ones I fear the most. Appendicitis is what really scares me. Usually whenever I have any type of stomach issues or a fever I go to the hospital just to get it checked out.

The last time I had a broken bone, my wife actually noticed before I did. My foot was swollen, black and blue, so I went to the doctor and had an X-ray and they told me that I had broken two of my toes and they wanted to put a cast on it.

I had to go to work the next day. If had a cast on I wasn’t going to be able to work for quite some time so I just told them I’d take care of myself. I went home and took some duct tape, taped it up, put my boots on and went to work that next morning.

One of the things I’m going to have to face soon is the fact that I won’t have my left leg anymore. I’ve had quite a bit of surgery on my left knee in the past and it’s got to the point where my doctors have told me to wait until it gives out completely. Once that occurs they’re just going to have to amputate.

I really try not to think about it. I try not to let it get to me.

But I can’t help thinking congenital analgesia was partly why my brother chose to take his own life.

His back was getting progressively worse. He was pretty close to graduating from a local college and the doctors told him that probably in the next year, year-and-a-half, he would be in a wheelchair.

He was an “outdoors man” – he liked to be outside, to fish and to hunt. But he tried to see about getting some sort of financial disability assistance once this would all happen. And pretty much what the judge told him was: “If you’re not in pain then you have no reason to be on any type of assistance.”

The thing is, with our condition, a lot of people see us and they might assume that we’re healthy.

But they have no idea that my body could give out at any time, that I ache all over. I have severe arthritis in my joints. It’s not painful – I don’t feel pain – but it’s hard to move around sometimes.

It feels like a compression, a throbbing compressed feeling in my joints. On a bad day it makes me very cranky when I have that feeling all day, because it’s just a nuisance. It limits your mobility and your joint isn’t able to move as much as it should.

As for doctors, I think they understand the condition. They just don’t understand the human component of it – the psychology of what can happen when you grow up not being able to experience pain.

Paddy Masefield OBE Dies Aged 70

July 17, 2012

I have just read sad news on the Disability Arts Online Facebook group:

Sadly Paddy Masefield OBE, died last Friday aged 70. He was an acclaimed theatre practitioner and key disability rights campaigner, who fought for the condition on the Arts Lottery funding that all arts building applications had to include access.

DAO have published a full obituary here.

Olympics Affect Dementia Care Centres

July 16, 2012

Elderly people in east London are told that some day care centres will close during the Olympics because staff may be unable to travel to work.

Waltham Forest Council says services at at least two centres in the area are likely to be affected.

It has left some carers worried they will not get the help they need.

Tips For Prevention Or Delay Of Hearing Loss

July 16, 2012

This is a guest post by John O’Connor. Thanks to John.

Nearly 17 percent of Americans are suffering from hearing loss. Hearing loss ranges from mild to moderate. Experts are astonished by the large number of people suffering from hearing loss. Because hearing loss is the third largest medical condition in people over the age of 60, physicians are fighting to educate people with poor diets, diabetes and exposure to harmful environmental factors. Prevention is one of the best methods of defense against hearing.

What Causes Hearing Loss?
Hearing loss can be caused by vitamin deficiencies, medical conditions, infections, environmental stressors, wax buildup, hereditary conditions and ruptured eardrums. People at-risk for hearing loss may consider prevention mechanisms to avoid these common causes for hearing loss. For instance, people with vitamin deficiencies and diabetes are at a greater risk for hearing loss than people who are not suffering from these problems.

How Can Hearing Loss Be Prevented?

 

For this reason, people suffering from vitamin deficiencies should have a diet with the recommended daily allowance of vitamin A, B, C, D, E and manganese. These vitamins protect against nerve damage and fights free radicals associated with hearing loss. People with diabetes should learn to monitor their blood sugar levels and maintain a healthy diet to prevent hearing loss.

If you have been exposed to loud noises, take supplements immediately after exposure to eliminate the presence of harmful free radicals in the body. When the supplement is ingested, it fights free radicals known to cause hearing loss and protects the person taking the supplement. For preventative care, supplements should be taken 12 hours before the exposure to noise occurs.

Other Prevention Tips
Wear Protective Ear-Wear

 

Protective ear-wear can protect people from loud noises over 80 dBA. People should remain diligent about wearing protective ear-wear in all types of loud situations including rock concerts, factories, salons and while mowing the lawn. Ambulance drivers are also at-risk for hearing loss. They should consider wearing protective ear-wear that also allows some sound to permeate in order to drive effectively.

Avoid Noises Over 100 dBA

 

A rocket launch may be really interesting to watch, but the decibel-level is over 100 dBA and will cause pain to a person’s ears without proper protection. If at all possible avoid prolonged episodes around ambulances, rocket launches and 12-gauge shot guns. These items and others over 100 dBA should be avoided unless it is a job-critical situation or a life-changing moment.

Have Long Periods of Quiet

 

After long periods of exposure, try having long periods of quiet time to give the ears a moment to reset. This will slow free radical production and prevent premature hearing loss.

Matthew Newbury: DisAbled Secret Millionaire

July 16, 2012

Disability Horizons have interviewed Matthew Newbury, the Secret Millionaire participant who is a leg amputee. I read about him for the first time in their article, but I found him interesting, and I thought you might too.

Sally And John Bercow On Raising A Son With Autism

July 16, 2012

 

https://twitter.com/talkaboutautism/status/224819706736033792

Chris Moon To Run Ultramarathon

July 16, 2012

A Lanarkshire man who lost an arm and a leg while supervising mine clearance in Mozambique is to run one of the world’s toughest ultra marathons.

Chris Moon, 50, who lost his limbs in 1995, is in the US to take part in the 135-mile Badwater run in California.

He will run through Death Valley to Mt Whitney in temperatures of up to 55C (130F).

Mr Moon, who was born in Wiltshire but lives in Strathaven, said he wanted to “challenge the concept of limitation”.

The race, which gets under way on Monday, pits about 90 of the world’s toughest athletes – runners, triathletes, adventure racers, and mountaineers – against one another and the elements.

Mr Moon has run the race before – in 53 hours – and wants to cut 10 hours off his best time.

He is running to raise funds for a group of charities – including O2E, which helps disabled and disadvantaged children.

He has been running marathons, ultra-distance races and raising money for charity for the past 15 years – and is the first amputee in the world to run the world’s toughest ultra marathons, beginning with the Marathon Des Sables in 1996.

In September 2010 he became one of a handful of people to run more than a marathon a day for 30 days continuously, covering more than 1,000 miles.

He said: “I am excited. I have done the training and I just want to get out there.

“I am looking to take 10 hours off my best time.

“I know more about running and artificial legs have got a lot better.”

He said he hoped to keep running such events into his 70s.

“I want to overcome physical challenges and show that I have not been weakened by the unfortunate things that sometimes happen,” he said.

“I run further now than I ever did before I was blown up.

“I am driven by all sorts of things – what is life without aspirations?”.

The Penny Drops For 50 Cent

July 16, 2012

This is a guest post by Phil Evans. It was originally posted yesterday at Phil’s personal site, My Autistic Life. Thanks to Phil.

On Wednesday 4th July 2012, 50 Cent saddened and alienated many of his followers on Twitter and members of the general public that are either affected by or know others that are affected by autism.

Having received a tweet from one of his many followers that seemed to cause offence, a response which branded the sender as disabled by saying “yeah just saw your picture fool you look autistic” has caused mass outrage.

Such a way of making feelings known is merely childlike. Names and insults are usually shouted out on the school playground between little children who are looking to cause trouble or retaliate.

These outbursts are not meant in a vicious way, however, and are not intended to create a feeling of hurt.

Twitter is not the place to revert back to these infantile methods of retaliating though.

Adults should really know better too as hopefully, maturity changes a person.

For 50 Cent, this did not seem to be the case as he made the decision to use the autistic spectrum as an insult.

An insult which may have been taken on board by autistic people and those who care for them to a greater extent than the tweeter who was targeted originally.

Holly Robinson Peete, an American actress who recently appeared in 21 Jump Street as Officer Judy Hoffs in a reprisal of her role from the original television series, openly shared her disappointment in an open letter on the tweet’s consequences for those that were affected by it.

With such a response from a prevalent advocate of autism coming to light, a spark of anger towards the comments was unleashed.

What was 50 Cent’s response to this though, I hear you ask?

An apology. Simply an apology which carried a short and hopefully, meaningful, message:

“I realize my autism comments were insensitive, however it was not my intention to offend anyone and for this I apologize.”

Now, this sign of regret for what was earlier said is hardly as deep and meaningful as many of his song lyrics, but it seems to appear that he feels a sense of remorse for what he said in the past.

I’m choosing my words carefully here, as seems is the perfect word to describe the brief tweet in the eyes of some of the autistic people and family members that have been affected by his actions.

Neither Robinson Peete or 50 Cent have shared their views with me, despite being offered the opportunity and despite an initially positive response from Robinson Peete, but My Autistic Life‘s Facebook page has been inundated with comments.

Marcia is critical of the apology’s sincerity as she says: “I don’t know if an apology is enough. Is the apology sincere, or is it to save face? Did his publicist write his apology for him?”

She goes on to say: “Maybe someone should use the toothpaste example on 50 Cent. Imagine your words are like toothpaste.

“Make him squeeze some out, and explain that those are the hurtful words that he just said. Now make him try and put them back into the tube.”

Ed shared Marcia’s concerns by saying: “I think it’s something posted by his PR”, while other comments eluded to further ways of rectifying a serious error.

The idea that has come out as possibly the most educational amongst readers of My Autistic Life is that 50 Cent should publicly speak out on autism. Perhaps a way of showing his knowledge of not only Asperger’s Syndrome but also that of the autistic spectrum?

Janet said: “I think autism awareness groups should petition him to do public service events that promote autism awareness”, while Stefanie said: “He can show he is sorry by volunteering with the special needs community and learning first hand about autism.

“He will see for himself how much he can learn from the autism community.”

As these quotes go to show, there is more work to be done than just a quick apology.

Why not follow the advice of those that are affected by autism and do a little more, 50 Cent?

British Paralympians Prepare For The Games

July 15, 2012

The British Paralympic team aims to build upon its success in Beijing – when it won more than 100 medals.

Anjana Gadgil spoke to wheelchair basketball competitor Natasha Davies and paralympic footballer Billy Thompson about how they were preparing for the competition.

Sascha And Nyree Kindred: Love, Life, Swimming And Cerebral Palsy

July 15, 2012

What an inspirational couple. Talented, famous, DisAbled, and happily married with a child. Wow.

Sascha and Nyree Kindred are the golden couple of British disability swimming. If you Google that phrase, their names pop up. And considering between them they have amassed more than 20 gold medals in international competitions, and Sascha holds two world records, it’s not all that overblown.

Today, though, talking at their home in Hereford and with the toys of their 14-month-old daughter Ella scattered over the living-room floor, the golden couple are as remarkable for their ordinariness as they are for the sporting successes achieved against the odds.

Sascha, 34, and Nyree, 31 – who have an OBE and MBE respectively for their services to disability sport – have cerebral palsy (CP), a neurological condition that normally occurs before or during birth. For a number of reasons, usually lack of blood supply and therefore oxygen, parts of the brain die or do not develop.

Occasionally, as in Nyree’s case, it can be inherited. The damage leads to, among other things, problems with muscle development, control and movement.

Their success in sport and fulfilment in their personal lives should serve as inspiration to the thousands of Britons with similar disabilities, and to the families of the one in 400 people born with CP.

Both Sascha and Nyree have faced great obstacles. Not least among these is prejudice – whether from cruel bullies who taunted them or well-meaning surgeons who offered to help ‘fix’ them.

Sascha’s twin brother, Timo, is a minute older (‘It’s the only thing he’s beat me at,’ laughs Sascha) and has no disability. He is dark-haired, broad-shouldered and, at 6ft 4in, a good few inches taller than Sascha, who is blond, blue-eyed and fine-featured. Timo, who works in legal services, helps manage his brother’s publicity.

A twin birth increases the risk of CP tenfold. The charity Scope says about 1,800 children are diagnosed every year.

‘When two or more babies share the womb and a placenta, the risk of one foetus not getting enough oxygen is greater than with a single pregnancy,’ says Dr Chaniyil Ramesh, a consultant paediatrician at Watford General Hospital who specialises in CP.

Cases of CP are on the rise, which is thought to be linked to the increase in multiple pregnancies as a result of fertility treatment. Symptoms vary: some people have problems walking while others are profoundly disabled and require lifelong care.

Speech is affected in a third of cases, but this has no bearing on intellectual development. In some cases, those with the condition suffer epileptic seizures and, rarely, learning disabilities.

‘That’s the most common misconception. People think our brains are affected,’ says Sascha, who has no speech problem. He walks with a slight limp and cannot open his right hand. He was badly bullied as a child. ‘Mum didn’t want me to be treated any differently from my brother, so I went to a mainstream school. But they called me “Hop-along” or “Spaz”, and they would spit at me.’

 

At the Paralympics in September, Sascha will be competing in the 100m breaststroke, 200m individual medley, 50m freestyle and 50m butterfly.

At the Beijing Games in 2008, he set world records in the medley and breaststroke, where his time of one minute 22 seconds is just 24 seconds slower than the record held for the same race by an able-bodied swimmer. His wife is going for gold in the 100m backstroke.

Despite his success, the bullying has left emotional scars. ‘It does upset me. After the Beijing Games and all the attention I got, some of the kids who picked on me at school started trying to be my friend on Facebook. I can’t bring myself to accept their requests.’

Sascha and Nyree met in 1996 at a sport training weekend in Nottingham, and within a few years they had moved in together. They married in 2010.

Both were intrigued by a recent Channel 4 documentary series called The Undateables, which looked at the difficulties faced by people with disabilities in finding romantic partners. ‘No one is undateable,’ says Nyree.

Have they ever had an able-bodied partner? ‘We were childhood sweethearts,’ says Sascha. ‘But I didn’t go out with Nyree because she is disabled – I went out with her because of who she is.’

‘Some coaches said I’d only swim in circles’

What do they think of websites, such as disabilitydating.com, which aim to put disabled people together? ‘I know people who are disabled with non-disabled partners,’ says Nyree. ‘We should feel able to go on to the same sites as anyone else.’

Sascha has a form of CP known as hemiplegia – as well as walking with a limp, his right arm is thinner and weaker than normal and his hand is permanently clenched and turned inwards.

Nyree, who grew up in South Wales, has diplegia, meaning both her legs are affected so she cannot walk without support. ‘If I were standing in the middle of a room without my stick, I would fall over,’ she explains. She uses a wheelchair much of the time.

‘I get spasms in my legs, which make my whole body shake,’ she adds. ‘When it’s cold, my muscles get stiff and I can’t walk at all. I have lots of hot baths in winter.’

Sascha says: ‘It’s like an uncontrollable twitch. Hemiplegia is just one side, and even the right side of my face feels different from my left. It’s hard to explain, but it’s like you could cut me in half.’

Both of them started swimming at local clubs as children. What was the attraction? ‘The freedom,’ they say simultaneously.

Sascha, who was born in Munster, Germany, moving to London aged two and to Manchester as a teenager, says: ‘A few coaches wouldn’t take me, saying I’d only swim in circles. But Timo was doing it and I wanted to be the same, so Mum found me a club eventually.

 

‘I got better than everyone else – able-bodied or otherwise. Water is weight-bearing – it supports you. When I swim, I don’t feel like my disability is holding me back.’

Nyree agrees: ‘I have rubbish balance but I can stand up in the shallow end and not fall over. I can move in a way I can’t on land.’

Both were offered surgery as children, but neither has ever felt the need for medical intervention, arguing that exercise help them to manage their symptoms.

‘Mum was told I could have an operation to stretch the tendons in my leg but she said no. She wanted me to do it naturally with physio and exercise,’ says Sascha.

Nyree’s father, John Lewis, and her aunt also had CP, and they didn’t want her to have surgery. ‘I was offered an operation where they cut the tendons in the back of the ankles, knees and groin,’ she says.

‘My father didn’t want me to have it – his sister had it and he said she still had difficulty walking. A friend with a similar disability has had so many operations – little tweaks to fuse bones and make her legs more stable, things like that. To me, it’s not worth it.’

About a third of children with CP undergo surgery. There are operations to release tendons in the legs and arms, freeing movement, and procedures to realign hips and straighten the spine. More recently, there has been some success in operations on nerves in the spine. ‘Surgery will improve quality of life in about half of patients,’ says Dr Ramesh. ‘The condition can get worse again over time.

‘Botox injections, which relax the muscles, have to be repeated every three months. The one treatment we know works incredibly well is regular exercise. This does improve symptoms in all cases.’ Alongside physiotherapy, both swimming and yoga are recommended.

 The Kindreds have a six-day-a-week training regime, starting each day with a two-hour swim. ‘We go up and down, up and down,’ laughs Sascha. ‘We swim about 160 lengths during each session.’

They then pick up Ella from her creche and have lunch before resuming training. They also work out with a personal trainer, lifting weights.

Many elite athletes suffer long-term health problems, such as arthritis, due to their extreme regimes, but the Kindreds are sure their training has only a positive effect. ‘I know it’s good for me. I can feel the difference when I take a break,’ says Sascha.

Nyree feels the same. ‘If I don’t swim for a long period, my muscles become stiffer. As a boy, my father, who died a few years ago aged 68, could run about and kick a ball, but as he got older he did less exercise and got stiffer and stiffer. Eventually he couldn’t put on his shoes.’

While she was pregnant with Ella, Nyree trained right up until her due date and after the birth took just six weeks off from training. ‘I had a lot of pain during pregnancy. I couldn’t walk anywhere and just used my chair all the time,’ she recalls.

Nyree suffered from symphysis pubis dysfunction – pelvic girdle pain, a common complication during pregnancy in which the pelvis moves excessively, causing discomfort.

‘Nothing beats being handed my daughter’

Did the couple have reservations about starting a family? ‘We’ve both always wanted children,’ says Sascha, ‘and we had been told by a consultant that there wouldn’t be any real problems.’

‘I knew I’d have more problems with movement,’ adds Nyree. ‘But I wasn’t worried.’

There was also a 50 per cent chance that Nyree could pass on her form of CP, although there was no way of knowing for sure. Did this not concern her?

‘I’d rather Ella be fit and healthy because there are things we get frustrated about,’ she explains. ‘I can’t just get up and go to the shops, it has to be planned. But if she had cerebral palsy, we would know how to handle it.’

In the event, the labour was uncomplicated and Nyree had a natural birth. Ella weighed a healthy 7lb 6oz and, as far as the couple know, has no disability.

‘Every parent wants a perfect baby so we did watch her closely,’ says Sascha. ‘Nyree’s disability wasn’t picked up until she was two.’

Aside from the trials and joys of parenthood, the Kindreds are focused on adding to their glittering haul this September, as they have both won places on the Paralympic swimming team. It will be Sascha’s fifth Games and Nyree’s fourth.

‘After that we’ll have a break,’ says Sascha. ‘And then, who knows?

‘I’m not sure when I’ll retire, but when I do, I’ll go into coaching or mentoring. Standing on the podium collecting gold is an amazing feeling, but being handed my daughter was better. Whatever I do, I will feel like a winner now.’

How Music Helped Three Dyslexic Children

July 14, 2012

Three brothers with dyslexia have overcome their struggles with reading music to be chosen to play in the National Schools Symphony Orchestra.

“I shudder to think what it would have been like without music,” says Sasha Baldwin, mother to three teenage sons who are all dyslexic.

Luke, 17, plays the violin and guitar. Patrick, 15, plays the piano, organ and trumpet while Robert, 14, is a gifted French horn player. They all sing too.

Yet at primary school they struggled from early on as dyslexia manifested itself in different ways in each of them.

“Luke had difficulties learning how to read, Patrick had problems with short-term memory and couldn’t remember instructions from school or telephone numbers and Robert had real problems with personal organisation and retaining information, as well as reading,” Sasha says.

The North Yorkshire school they attended recognised their learning difficulties and enlisted the help of educational psychologists to support them.

But Sasha, who now lives in Perthshire, realised that music could provide a valuable outlet for their development and she encouraged the boys to start learning the piano aged five.

Although they were enthusiastic, they all had issues with reading music.

“Robert had to give up the piano after a year as he couldn’t read two lines of music simultaneously and became very frustrated,” Sasha says.

A-team

So he took up the horn instead, an unusual instrument for a five-year-old, but it suited him because he only had to read one line of music.

Robert is gifted, his mother says, and music has played a huge role in helping him to achieve.

His two brothers have won places as choristers at the choir of St John’s College, Cambridge and all three have been invited to play with the National Schools Symphony Orchestra.

Aged 10, their school report said the boys were going to struggle to cope with exams – but they are now predicted to get A* in GCSEs.

Dr John Rack, a psychologist and head of research, development and policy at the charity Dyslexia Action, says that people with dyslexia can often do well at creative subjects.

“But we don’t know if dyslexia gives you a special advantage or whether dyslexic people go in a different direction and develop alternative talents.”

Dyslexia doesn’t automatically mean you’ll be creative or successful, he warns.

“You shouldn’t feel bad if you’re not creative.”

‘Easily distracted’

Teresa Bliss, an educational psychologist who works to help children and young people who are experiencing problems in school, says she is convinced that music can have an impact on children with dyslexia.

“Children and young people with dyslexia are often easily distracted and lacking in concentration.

Continue reading the main story

“Start Quote

The oldest one is flying now. He reads very fast and doesn’t need any extra time in exams”

Sasha Baldwin

“Music offers training in many of the areas where dyslexics typically experience difficulties such as understanding rhythm, sequencing, organisation, motor co-ordination, memory and concentration.”

Dr Rack believes music has a more logical structure than language which means it can appeal to people with dyslexia.

“Dyslexics find it easier to learn to respond through action than through speaking or words. They can struggle to remember names, for example, but give them a task and they can make associations very well.

“Their fingers know how to play the notes, but can’t always say what they are.”

‘Not faulty’

The key thing, dyslexics are told, is to find something you are good at and put lots of effort into it.

Reading and writing can be difficult but dyslexia affects children in many different ways, none of which are related to their level of intelligence.

However, it is the most common learning difficulty in schools, with some children needing long-term support.

Dr Rack says being dyslexic is not something to get stressed and worried about.

“It only becomes a problem if people deny it or if there’s a failure to recognise the effects of it.

“Just say you’re different, not faulty.”

Sasha Baldwin says that music has been a great discipline for her three dyslexic sons.

“They have all improved massively. The oldest one is flying now. He reads very fast and doesn’t need any extra time in exams.

“It’s been a great lesson in life to practise their instrument. They would not have got this far academically without music,” she says.

Woman Suing Justin Bieber For Concert Hearing Loss

July 14, 2012

A US woman has filed a 9.2 million US dollar (£5.9 million) lawsuit against pop star Justin Bieber, saying she suffered permanent hearing loss at a concert two years ago.

Stacey Wilson Betts filed the lawsuit on Wednesday in US District Court.

It says the mother of five sustained the injury at Justin’s concert in Portland, Oregon, after he climbed into a heart-shaped gondola and was pulled over the crowd.

The lawsuit alleges the Boyfriend singer enticed the fans into a “frenzy of screams” by waving his arms, and the sound exceeded safe decibel levels.

The gondola “acted as a sound conductor, creating a sound blast that permanently damaged both my ears”, it continues.

Betts, who attended the concert with one of her daughters, is seeking money for medical expenses, pain and suffering and loss of quality of life.

The lawsuit lists Justin as a defendant, as well as Island Def Jam Records and Vulcan Sports and Entertainment, which owns the arena where the July 2010 concert took place.

The lawsuit says Betts has been seeing ear specialists because of hearing loss; severe tinnitus, or noise or ringing in the ears; and hyperacusis, a sensitivity to sound.

How Doctors Let Down Girls With Autism

July 13, 2012

Annette Lewns has more experience than most of the different ways in which boys and girls with autism are treated. Her 14-year-old son, Ryan, was diagnosed when he was three and a half. But doctors refused to diagnose her 12-year-old daughter, Rachel, until she was nine.

“What angers me is that for years I was dismissed by doctors purely because Rachel was a girl. Ryan was spotted very quickly because the autism symptoms that doctors look for are so male-orientated,” said Lewns. “But Rachel’s autism was hidden unless you knew where to look for it.

“Rachel could express herself, she had a couple of friends and understood emotions if someone was at an extreme: really upset or really happy. But you didn’t really have to look too hard to see she didn’t genuinely understand emotions or relationships: she was just mimicking scripts and scenarios from TV.”

“The doctors failed time and time again to see through her coping strategies. I fought for years but I was confronted with a wall of disbelief and scepticism. They were simply unable to understand that a girl might present differently to a boy.”

While Ryan’s condition was acknowledged by their local authority, and he is now at a specialist school, Rachel continues to struggle at a mainstream school. “Ryan is being taught all sorts of tools and techniques to cope with his condition but Rachel is not,” said Lewns.

Estimates of the ratio of females to males diagnosed with Asperger’s syndrome or high-functioning autism varies from 1:4 to 1:10. No one understands this gender disparity: whether women really are less likely to be on the spectrum than men – or whether doctors are failing to spot the disorder in women.

Opinions are divided: Richard Mills, director of research at the National Autistic Society (NAS) says he “would not be surprised” if the true ratio was twice as high, with one woman on the spectrum for every two men. Dr Judith Gould, director of the NAS’s Lorna Wing Centre, thinks the ratio could be even narrower, with 1:1.5 female:male.

We may soon have an answer. Mills is leading the UK arm of a two-year international programme, Autism in Pink, which will look at the condition in women, focusing on the stress, social exclusion, vulnerability and misdiagnosis they suffer.

It follows concerns about reluctance to diagnose women. One recent survey by NAS found girls may wait longer than boys for a diagnosis and are more likely to be misdiagnosed: just one-fifth of girls with Asperger’s syndrome who responded to the survey were diagnosed by the age of 11, compared with half of boys.

The UK is leading the research side of the programme. Last week, Mills signed up the first two of the 12 women with Asperger’s he needs to work with researchers over a two-year period.

“I hope the programme will be the first step to ending the current trend for gender to be a barrier to diagnosis and post-diagnostic support,” he said. “Because research in the past has largely concentrated on males, the way we understand autism tends to be very much based on the experiences of men and boys with the condition. People are reluctant, for some reason, to make a diagnosis in girls and women.”

This reluctance is exacerbated by the fact that girls and women with Asperger’s or high-functioning autism can be more adaptive than boys: they are commonly better at hiding things or seeming more sociable, masking what doctors traditionally think of as the signs of autism.

But the strain of trying to appear “normal” can be immensely stressful. Gould said it results in “many of the girls we see having developed secondary problems such as anxiety, eating disorders or depression”.

This can also mean that misdiagnosis of girls and women is also a problem. The survey found 42% of females had been wrongly told they suffered psychiatric, personality or eating disorders, compared with 30% of males.

There is also the problem that the gender difference becomes a self-fulfilling prophecy: because more males are diagnosed than females, it is their symptoms and behaviours that experts have studied. The so-called screening tools, developed to help diagnosticians spot the syndrome, focus on culturally “male” interests, such as computers, trains and cars, rather than things more likely to appeal to a girl, such as animals, soap operas or fashion. Gould is rewriting the NAS’s diagnostic interview for social and communication disorders to include “gender-neutral” cues.

Even when an accurate assessment is given, however, it is no guarantee that the necessary support and help will materialise: the NAS survey found women continue to struggle after diagnosis, with half of females with Asperger’s or high-functioning autism – compared with 39% of males – saying it made no difference to the support they received.

Lucy Clapham, 25, spent years being turned away by doctors who insisted “girls don’t get autism” and told her to simply “act normal and read female magazines”. “I am certain that my diagnosis was delayed because of the fact that I am a girl,” she said. “My mum first noticed something when I was about six but our GP laughed at the suggestion. I’ve gone to counsellors, doctors and psychiatrists but all of them, including my teachers, refused to see I had classic autism even though I had casebook symptoms: almost no speech until I was five, no friends, hours spent staring at the washing machine, lining toys up and flicking my fingers in front of my eyes.”

When she was 12, Clapham became violent, aggressive and developed multiple tics, obsessions and compulsions. “I stopped talking outside of the house and sunk into an inner world,” she said.

After two more years and about eight counsellors, Clapham’s GP referred her to a child psychiatrist. “She was adamant that girls didn’t get autism, they just had ‘traits’,” said Clapham. “She claimed that I just needed to ‘act normal’ and that by buying nice clothes and reading women’s magazines I could learn to be ‘normal’. The only diagnosis I received from her was depression and anxiety.”

After leaving the children‘s mental health service “none the wiser and possibly with more mental health problems than when I had arrived”, Clapham was sent to the adult mental health service and, after a long battle, to the Maudsley hospital in London, where she was finally diagnosed with autism, Tourette syndrome and obsessive-compulsive disorder.

“I was still refused services, however, partly because there were none available and partly because our local authority was not willing to fund an out-of-town, specialist autism service,” said Clapham. “I ended up getting sent to a college for the blind where I developed more mental health problems and became very aggressive because no one understood me or my autistic behaviour.

“When I was 20, I ended up in care because my mother couldn’t cope with my aggression and anxiety.”

Clapham stayed there for three years but still struggles. “Despite my diagnoses, some people still seem to believe that autism is a ‘boy thing’,” she said.

There is no clear understanding about how many girls and women are being missed – or wrongly diagnosed – and for how long. But that may soon change: the first neuroimaging analysis of women and men, with and without ASD, has been under way for the past two and a half years at King’s College’s Institute of Psychiatry (IoP) and the Autism Research Centre at the University of Cambridge. It’s hoped this research could provide the clues. The final stage of the project is about to begin, with results expected in months.

“It’s very exciting,” said Dr Michael Craig, a senior lecturer and honorary consultant at the IoP’s department of forensic and neurodevelopmental sciences. “We could well be looking at gender-specific treatments for Asperger’s being developed in quite a short period of time.”

A ‘flaming’ great idea – five-year-old boy raises over £16,000 for charity with virtual eBay Olympic torch relay, and it’s only just started!

July 13, 2012

A press release from Hearing Dogs For Deaf People:


A five-year-old boy is on the way to raising thousands of pounds for a national charity – who create life-changing partnerships between deaf people and hearing dogs – after his very own Olympic ‘torch relay’ captivated thousands of people across the UK.

 

Back in June, Logan McKerrow – from Chard in Somerset – made his own Olympic torch at school ahead of this summer’s London games and, with the help of his mum Kerry, decided to list the torch on eBay to raise money for charity after learning about the work of Hearing Dogs for Deaf People.

 

After initially being listed on the online auction site, the torch raised just under £150 for the Charity, having been bought by three generous eBay bidders.

 

But Logan’s luck took a dramatic turn when his story featured on BBC Breakfast (July 7 and 8) and touched the heart of millions of viewers.

 

Overnight, Logan’s fan club on Facebook grew by thousands. Meanwhile his eBay page and Hearing Dogs for Deaf People’s Justgiving page received hundreds of donations which currently stand at an incredible £16,000.

 

Both Logan and his mum are now keeping their fingers-crossed that the torch will attract even more bids from across the UK ahead of the games’ opening on July 27, raising more money for the Charity’s ‘Let’s hear it for deaf children’ appeal – which aims to help fund more partnerships between deaf children and hearing dogs.

 

The Charity has even named a hearing dog puppy after Logan – called ‘Logan’ – in recognition of his amazing achievement.

Kerry said: “When I told Logan that his torch had sold and I read out all the fantastic kind words from everyone involved, he was over the moon.

“The person who won the first auction was also blown away by Logan’s generosity, so much so that they wanted us to relist the torch on eBay and to try and raise some more money.

 

“During this listing, Logan’s granddad came up with a fabulous idea that each winning bidder and proceeding winning bidders make their own ‘torch relay’ and raise funds for Hearing Dogs for Deaf People in the process – and so the story began! Never in our wildest dreams did we think we’d raise this amount of money for the Charity.”

 

Hearing Dogs for Deaf People – who are currently celebrating their 30th anniversary – train hearing dogs to alert deaf recipients to important household sounds and danger signals such as the alarm clock, doorbell and smoke or fire alarm both at home and in public places.

 

In addition, hearing dogs help to alleviate some of the stress, loneliness and isolation deafness can often bring giving recipients greater levels of independence, confidence and companionship at the same time.

 

Michele Jennings, chief executive at Hearing Dogs for Deaf People, added: “Ever since the Charity was launched in 1982, we have relied on the generosity of the public as we are a non-government funded organisation, so to learn of such an inspiring story as Logan’s really is fantastic.

 

“The lifetime cost of a hearing dog is around £45,000, so with this in mind, we would love to see more people take part in Logan’s torch relay, get into the Olympic spirit and raise funds for Hearing Dogs for Deaf People in the process.”

 

Back in March, the Charity announced that it would roll out a pilot project working with deaf children nationwide to sit alongside its existing 750 adult partnerships currently in operation.

 

And with around 45,000 children in the UK having a hearing loss, Hearing Dogs for Deaf People hopes that the ‘Let’s hear it for deaf children’ appeal will lead to an increase in the number of hearing dogs that can be trained each year for deaf children.

 

Since the Charity was launched in 1982 – co-founded by vet Dr Bruce Fogle, father of TV presenter Ben – it has created over 1,600 hearing dog partnerships.

 

To follow Logan’s Olympic torch relay, go to: www.facebook.com/logansolympictorch or head to: www.hearingdogs.org.uk/logan.

DWP Audit Finds £16M DLA Overpayment

July 13, 2012

About £16m has been wrongly paid to pensioners on disability living allowance and attendance allowance, the Department of Work and Pensions has said.

The DWP says 1,600 people have been overpaid by £20.55 to £131.50 a week.

The mistake has been uncovered by a DWP Accounting Service audit.

Minister for Disabled People Maria Miller says she will “consider carefully” how to recover the overpayments.

In “a small number of cases” such as terminally ill claimants and others considered too vulnerable, the money may not be reclaimed.

It is the second time overpayments have been found in these benefits and the DWP says it is “extremely disappointing” the problem was not solved when it was first discovered in 2007.

When claimants reach state pension age, disability living allowance and attendance allowance are combined into a single weekly payment with state pension and pension credit.

Action was taken in 2007 to end duplicate payments made in error but a scan by DWP accountants discovered they had continued to be made in 1,600 cases.

In a written statement, MS Miller said a monitoring programme had now been put in place “to ensure that there should be no further duplicate payments occurring in the future”.

The statement added: “It is clearly right that these cases should now be corrected.

“However, given the age and disability of the customers affected, we have considered carefully how we carry out recovery.”

She said each case would be considered on an individual basis and customers and claimants contacted to explain the error.

“I will consider making ex-gratia payments in a small number of cases where we consider it inappropriate to withdraw the overprovision of benefit,” added the minister.

“Based on information held by the department, the estimated cost of these payments will be no more than £500,000 in a full year.”

Georgie: A Smartphone For Blind People

July 13, 2012

A smartphone designed for blind people has been launched.

Georgie, as the device is known, has a voice-assisted touchscreen and offers a variety of apps to help complete tasks such as catching a bus, reading printed text and pinpointing location.

The phone was designed by blind husband-and-wife team Roger and Margaret Wilson-Hinds from Peterborough.

It was named after Mrs Wilson-Hinds’ first guide dog.

First text

The couple run a not-for-profit social enterprise Screenreader.

The handset is powered by an Android operating system and uses existing Samsung handsets such as the Samsung XCover and Galaxy Ace 2.

“I was able to send my very first text just earlier this year thanks to Georgie,” said Mr Wilson-Hinds.

“It’s exactly the type of digital experience we want to make easily available to people with little or no sight. It is also going to help solve everyday problems for blind people so they can be more confident about navigating the real world and become independent,” he said.

Robin Spinks, principal manager for digital accessibility at the Royal National Institute of Blind People, said: “Research continues to show that many blind and partially-sighted people struggle with the complexity of today’s smartphone technology.

Georgie is to be commended for allowing users to access the features of a range of modern smartphones in an easy-to-use and accessible manner,” he added.

The smartphone lets users dial a number with the voice-assisted touchscreen and uses speech input to send text messages.

Other apps are available in three different bundles; travel, lifestyle and communicate. Each bundle costs £24.99.

The phone is being distributed by Sight and Sound Technology, a firm which provides hardware and software to blind and visually- impaired people.

It is available from £299 or, for those with existing Android smartphones, a downloadable version can be purchased from Google Play, priced at £149.

It comes pre-loaded with a data SIM card. Users with pre-existing phone contracts can have it transferred to the new device or install a pay-as-you-go SIM card.

In the UK almost two million people are living with sight loss, with 360,000 registered as blind.

Sue Marsh On Worcester Council Care Plans

July 13, 2012

In a brilliant article at Comment Is Free.

First European Symposium on Euthanasia and Assisted Suicide‏

July 13, 2012

An email from Care Not Killing:

 

The Care Not Killing Alliance is organising the First European Symposium on Euthanasia and Assisted Suicide in Edinburgh, 6-8 September 2012 at the Edinburgh Conference Centre.

It is an honour to host this First European Symposium, which builds on several successful meetings in North America organised by the Euthanasia Prevention Coalition. The event will provide the opportunity to meet some of the best experts and campaigners on end of life issues from Europe and around the world.

The excellent facilities of the Edinburgh Conference Centre are a great venue for this first European gathering. In December 2010 the Scottish Parliament rejected by 85 votes to 16 the legislation in Scotland of euthanasia and assisted suicide. Threats continue in Europe and beyond. In plenary sessions with audience involvement, experts from around the world will stimulate consideration of:

  • The lessons from Nazism
  • The Benelux countries today
  • A global perspective
  • Scotland’s successful resistance
  • Strategy: what works? What doesn’t?
If you are committed to opposing euthanasia and assisted suicide, come and join us at this unmissable conference!
We have included very reasonable day rates for the conference. There are limited places so please book now to avoid disappointment!

You can download a conference programme and book online from our website here.

If you have any further questions or queries, please contact us on 020 7234 9680 or administrator@carenotkilling.org.uk

 

Disabled People Concerned About London Stations’ Olympic Overcrowding

July 12, 2012

“I won’t be going out on my own because the travelling will be a nightmare,” said Jamie Tse, 33, when asked about her plans for the Olympics.

Miss Tse, of Forest Hill, suffers from Multiple Sclerosis and relies on a crutch to get around. Her condition forced her to retire from the job of a research scientist at King’s College London in 2007.

She will go to events at the Olympic Park in Stratford, Lord’s Cricket Ground and Wembley Stadium, but other than that plans to steer clear of the crowds as it makes her “anxious”.

She said: “Infrastructure per se is brilliant but since I am not in a wheelchair when I walk I get tired very easily, (and) my right leg drops so I lose my balance and trip over quite easily.”

On Tuesday a “rehearsal” of what travel conditions will be like during the Games was marred when a train broke down at King’s Cross Tube station and passengers were prevented from entering the station for 15 minutes to ease congestion.

Alex Turner, 41, a guide dog owner who works for the Metropolitan Police, said he plans to work from his home in Essex half the time to avoid overcrowded stations and trains.

His guide dog Westley finished training school only five weeks ago and will need time to cope with “new situations”.

“With large crowds the guide dog will not be able to see as far ahead as possible to work out where we need to go, so there’s more potential for getting lost or misdirected,” he said.

Transport for London (TfL) is expecting an extra three million journeys on the already packed transport network catering to 12 million passengers a day, as visitors are encouraged to use public transport.

And for disabled people the commute to work and the venues will require more effort and planning, charities warned.

A recent survey of Games venues by disability charity Transport for All and passenger watchdog London TravelWatch found that 13 of the 14 venues had step-free access and shuttle buses will be available for less mobile people.

Therefore accessibility was not an issue, but overcrowding was.

TfL said 66 stations have step-free access and there will be manual ramps at another 16. There will also be rapid response teams to repair lifts and 7,000 trained staff at travel “hotspots” to assist travellers.

Gareth Powell, London Underground’s director of strategy said: “All Tube stations have staff trained to assist passengers, and every station on the DLR is step-free.

“Our bus fleet is the most accessible fleet in the world – with every one of our 8,500 buses low-floor wheelchair accessible and fitted with ramps which are checked daily to ensure they are working.”

No earphones please

Gary Parckar, head of policy at Leonard Cheshire Disabilities, said for many people the Tube could be a “no-go area” over fears of congestion and they would rely on buses and “it was absolutely imperative that the bus network works effectively”.

Both drivers and passengers need to help disabled people, for instance by making space for wheelchairs, he added.

Leonard Cheshire Disability, the Royal National Institute of Blind People and Transport for All advised disabled people to plan their journeys and let their disabilities be known to assistance staff.

Lianna Etkind from Transport for All also urged TfL to publicise information disruptions offline as “certainly in Tower Hamlets, Newham and Waltham Forest local people feel that they have not seen offline information about how they will be affected.”

Theresa Robberts, 37, of Shepherd’s Bush, who is visually impaired, said dealing with the rush-hour on her way to work at the Guide Dogs charity in Euston will not be daunting for her and her guide dog Rikki.

She said: “If it’s very full I do try and get a seat so that nobody steps on her feet or on her tail. Then I call her to ‘come in tight’ and what she does is curls in a ball as tight as she can and lies against my feet.”

“I am going to the Paralympics several times as part of my work and I think your challenges would be very much what it normally would be, it might be just a little bit more amplified.”

Accessibility legacy

But Miss Robberts asked commuters to watch out for disabled people.

“What would be absolutely brilliant is if they don’t have their earphones on while walking or changing in the station.

“When they bump into me, Rikki thinks she’s done something wrong. A lot of guide dog owners have learnt to make a stiff shoulder while walking so that if somebody does bump into you, you don’t topple over,” she added.

Mr Turner added: “A massive issue that assistance dog owners have is that the public seem to think they have a right to touch or call the dog.

“If someone distracts a guide dog, the dog is not focussing when it’s walking and it can put the dog and the handler at risk of injury or worse.”

Miss Tse said “inconsiderate behaviour” had put her off from tackling busy stations.

“One time when I was in London Bridge station some woman tripped me, kicked my crutch and nearly made me fall. She didn’t even apologise and turned around and gave me a dirty look.”

Charities said despite TfL’s “concerted effort” there should be a “legacy of accessible transport”.

TfL said seven more Tube stations will be step-free by 2018, but charities said the target was scaled back from 29% to 26% since 2008.

Transport for All want the manual ramps and the rapid response teams for lifts to remain while Leonard Cheshire is campaigning for London’s gyms to be made accessible.

Ms Etkind said: “Once the last gold medal has gone out, disabled and older people will still need to get to education, work, friends and family, shops and healthcare.”

Nurse Who Told Paralysed Patient To Shut Up Guilty Of Misconduct

July 12, 2012

A panel has ruled a nurse’s actions in telling a paralysed patient to shut up or she would call his family and put him out in the car park was misconduct.

But Caroline Gervaise-Brazier was cleared of advising colleagues not to rush to revive a patient if needed.

The 55-year-old of Trecenydd, Caerphilly, was cleared of two further misconduct charges, but admitted one of removing sheets from Rookwood Hospital.

The Nursing and Midwifery Council panel will decide if sanctions are needed.

Miss Gervaise-Brazier was dismissed from her job on a spinal unit ward at Rookwood Hospital in Cardiff after the incidents.

During the three-day hearing, the staff nurse argued the words she used in telling two nursing auxillaries “do not rush, take your time”, meant not to rush the procedure rather than not hurry to assist the man, known as Patient A, if he had a heart attack.

The auxillaries, Linda Camilleri and Hayley Fuller, told the panel they were shocked at what they interpreted was an instruction not to hurry to help the patient, whom they claimed the nurse had previously called spoiled.

The panel found to be proven the allegation that Miss Gervaise-Brazier told Patient B, another paralysed man with learning difficulties who was suffering from severe vomiting in the middle of the night, to “shut up” or she would call his family and put him out in the car park.

The panel cleared her of telling Patient B while he was distressed that he could not move his legs because he was paralysed and would be in a wheelchair for the rest of his life.

They also cleared her of calling Patient C a “pervert” and telling Patient D who had complained of chest pains to “shut up” as there was “nothing wrong” with him.

The panel ruled she had not acted dishonestly in relation to removing the sheets.

Returning the panel’s decision on the charges, chair Catherine Duthie said the reasons for the findings would be given at a later date, as would a decision on whether any sanctions would be taken against Miss Gervaise-Brazier.

‘Completed a course’

The panel had heard from the nurse’s barrister, Sian Cutter, that Miss Gervaise-Brazier had been in continuous employment as a nurse in the four years since losing her position at Rookwood and read a number of references from former employers attesting to her nursing capabilities.

Miss Cutter said Miss Gervaise-Brazier’s words towards Patient B about putting him outside had been consistent with a pattern of banter she used with the patient previously which usually made him smile and cheer up but on that occasion did not.

“She did not intend to upset the patient further,” she added.

The panel heard Miss Gervaise-Brazier had also recently completed a course on how to deal with difficult patients, which she said showed evidence that the nurse had learned lessons from the events in question.

Mrs Duthie told Miss Gervaise-Brazier she would not make an interim order suspending her from the nursing register until the panel could make a final decision.

“Your current practice does not present a serious risk to the public,” she said.

Speaking after the hearing, Miss Gervaise-Brazier said: “It’s been stress to the point I have had four years of hell through people trying to discredit me.

“It’s been found that apart from a few misunderstood words that I’m totally innocent.

“I’m a good nurse.”

The hearing was adjourned to a date to be decided.

New Report: Past Caring

July 12, 2012

A press release from WeAreSpartacus:

New council policy condemned as ‘flawed and wrong’ as national campaign group publishes report on Worcestershire care changes

In the wake of the white paper on social care and in light of recent uncovered abuses such as Winterbourne, Worcestershire County Council’s proposed changes to care for disabled people in the county have been condemned as ‘flawed and wrong’ by a national campaign group which has published a new report on the proposals.

‘Past Caring’, which has been published by the research team at the WeareSpartacus campaign group, analyses the county council’s proposals for a ‘maximum expenditure policy’, which would impose a cap, meaning that anyone needing significant amounts of support may have to go in to residential care. As well as criticising the council’s current consultation exercise, the report shows the new policy:

  • Will mean disabled people get less support
  • Will mean a deterioration in care standards and quality of life
  • Could lead to disabled people forced into residential care, even if they don’t want to
  • Could force disabled people to rely on charity for the help and support they need
  • Goes against the recommendations of the Government’s flagship white paper on social care reform
  • Could be open to a legal challenge

Dr Sarah Campbell, one of the report’s authors, said:

“We know that times are hard; disabled people in Worcestershire and across the country are being hit by cuts to benefits and social care services. But the county council’s approach is flawed and wrong. Flawed, because any ‘maximum expenditure policy’ will have a series of knock on effects for health and social care providers which may end up costing even more; and wrong, because disabled people should be encouraged and supported to live safely independently.

“Institutionalising disabled people is not the answer to the social care crisis, in Worcestershire or anywhere else.”

The report acknowledges the challenges facing local authorities across the country, but also highlights the principles of independence for disabled people, including a right to choose where and how they live, be part of their communities and have control over their day to day lives.

Jim D Smith, Secretary of Worcestershire Coalition for Independent Living, points out:

“In a week when the Queen visits the County to open a new £60 million library it’s sad to reflect that the lives of some individuals in the County are threatened by such negative proposals. These proposals, if implemented, will undermine a generation of progress towards independent living and cause real mental anguish for individuals and families.”

Local resident Steve Sumpter adds:

“The council needs to be more active with its consultation, and respond to the searching questions it’s refusing to answer. But disabled people, their friends and families also need to speak up. The consultation finishes later this month (July), and it’s crucial their voices are heard. It’s also vital they contact their local councillors and MPs to express their views before the final decision is made at the end of September.”

For further information, contact Sarah at research@wearespartacus.org.uk

You can read the full report here.

Maria Miller Responds To Ray Bellisario’s Bus Campaign

July 11, 2012

The minister for disabled people, Maria Miller, has called for a change in attitude and behaviour towards wheelchair users and other disabled people as one man said he was taking legal action against bus companies in London after being refused permission to board on 28 occasions.

Transport for London (TfL), the body responsible for transport in the capital, was on Wednesday evening unable to say whether the type of mobility scooter used by Bellisario was allowed on buses, but had ordered companies to investigate his claims “as a matter of urgency”. Some types of scooter are barred due to their “limited manouvrability” but TFL declined to say from pictures whether Bellisario’s vehicle fell into this category.

Miller said she had intervened in a similar dispute in her own constituency and that for many disabled people, “the ability to travel on public transport meant independence and freedom to take control of their own lives”.

Bellisario said he was taking four companies to court seeking compensation of £40m, alleging breaches under the Equality Act 2010 and “numerous other laws”. He regarded such sums “as a very nominal figure” in the context of the companies’ income globally. He said drivers had repeatedly refused to allow him to get on their buses and, on an occasion he had been allowed on, he was subjected to abuse by other passengers.

Miller, the MP for Basingstoke, said in a letter to the Guardian: “While we already have regulations in place to ensure that bus drivers give disabled people – including wheelchair users – assistance to get on and off buses, there is clearly more to do.

“I recently met with Stagecoach to discuss this exact issue after one of my constituents had suffered similar experiences to Mr Bellisario and was refused entry to buses around 18 times.” Stagecoach addressed the issue with individual drivers, Miller said.

But such episodes were “not just about the infrastructure – the article references ramps which don’t work – but also changing attitudes towards disabled people.”

The government was developing measures to enable disabled people “to participate fully in daily life”.

Andrew Dyer, the managing director of Stagecoach Southern, said two members of staff had been disciplined as a result of the complaints in Basingstoke. “These issues have been dealt with. We have taken the opportunity to upgrade our training programmes and to involve local wheelchair users in this.”

,Leon Daniels, TfL’s managing director of surface transport, said: “We have been contacted by Mr Bellisario on a number of previous occasions and have been working to investigate the circumstances of the incidents he describes.”

He hoped a new “mobility aid card” for people who used wheelchairs, mobility scooters and other mobility aids and revised guidance, including pictures of such equipment, being issued to all 24,000 bus drivers in London would remove confusion over what could be carried.

“Unfortunately, we are unable to safely carry some types of motorised scooters due to their limited manoeuvrability while on board the bus.”

A spokesperson for the mayor of London, Boris Johnson, said: “The situation described by Mr Bellisario is clearly unacceptable. Every London bus is equipped to carry wheelchairs and all drivers are trained extensively in how to help passengers in wheelchairs.” Neil Coyle, the director of policy at Disability Rights UK, said: “Even in London, where buses are generally more accessible, it tends to come down to whether the equipment is working properly, is the driver properly trained and is the bus near enough the curb so the ramp can come down?”

Other passengers might not be aware of the priority which should be given to wheelchair users.

“Some people are incredibly rude about moving luggage when they are supposed to … We have had complaints about passengers verbally abusing [wheelchair users] when they are asked to move,” said Coyle.

Drivers who normally took action to assist disabled people might not step in if they faced “a barrage of abuse trying to get things done”.

London 2012 Paralympic Hopeful Rachel Morris Injured In Road Crash

July 11, 2012

A Welsh Paralympian is battling to be fit for the London games after being injured in a collision with a car.

Rachel Morris, a hand-cyclist who won gold at Beijing in 2008, suffered whiplash and shoulder injuries in the incident during a time trial in Hampshire last Thursday.

Her condition means she takes longer to recover from injury, putting her Paralympic hopes in jeopardy.

“This has totally screwed me up,” said Morris, from Milford Haven.

It follows an incident last summer in which Welsh Paralympic cyclist Simon Richardson was seriously hurt in a collision with a vehicle while training near Bridgend.

Morris, who is based in Guildford, Surrey, had been expecting to compete in the London Paralympics in August.

The crash happened on the A31 near Alton, Hampshire.

A record 38-strong contingent from Wales for the Team GB squad was revealed on Tuesday.

“I feel like everything I’ve worked for has been taken away,” she said.

“I can’t imagine not being there, but I know how long it has taken me to recover from this type of injury before, and it was longer than I now have before the games.”

Morris’s condition, reflex sympathetic dystrophy, involves a malfunction of the nervous system and causes extreme pain and sensory abnormalities, which previously resulted in her having her legs amputated.

When she suffers an injury, her body reacts in a damaging way which means it impacts upon her more seriously.

She said: “The bike went up into the air.

“I remember looking across and I was aware that I was at the same height as the passengers in a car passing in the outside lane.”

She has been to the GB cycling team’s HQ in Manchester to visit team doctor Richard Freeman for an assessment of her shoulder injury.

Her bike will also have to be replaced after one of the wheels was destroyed in the crash.

Gold medal

British Cycling said Morris had been a cornerstone of the GB cycling team’s Paralympic squad for a number of years.

She made her Paralympic debut at Beijing, winning a gold medal in the time trial.

More recently, she won gold at the time trial and road race at the 2010 world championships, and bronze in the road race in 2011.

Paralympic gold medal winning cyclist Richardson, from Porthcawl in the Vale of Glamorgan, suffered life threatening injuries in a collision last August.

He was released from hospital in September but faces up to three years recovery.

Social Care White Paper: Reactions From The Sector

July 11, 2012

Collected and compiled by the Guardian.

Roy Greenslade On Ray Bellisario

July 11, 2012

Roy Greenslade thinks Boris Johnson should watch out for Ray Bellisario.

Universal Credit And Disability

July 11, 2012

Radical reforms to the benefit system due to be implemented next year will make tens of thousands of disabled adults and children worse off, according to new analysis by a group of disability and children’s charities.

The Disability and Universal Credit report, compiled by Disability Rights UK, the Children’s Society and Citizens Advice, warns that few people have yet grasped the full impact of the changes, which will be implemented in October 2013, when a series of means-tested benefits are streamlined into a single new benefit, universal credit.

“No group will be more affected than disabled people,” the Paralympic champion Lady Grey-Thompson, writes in an introduction to the research.

Grey-Thompson, who is now a cross-bencher in the House of Lords and who has already spoken of her concerns over cuts to disability benefits, writes: “Under the new system, financial support for some groups of disabled people will be much lower than current support available for people in the same circumstances.

“Cuts such as those to support for most disabled children and disabled adults living alone are going to make the future considerably bleaker for many of the most vulnerable households in Britain.”

The report highlights in particular the impact of the abolition of the severe disability premium, which will remove around £60 a week from benefits paid to adults who live alone, or just with their children, and who are so seriously disabled they are unlikely ever to find work. The cut leaves them with less to spend on paying for carers, and will mean an estimated 25,000 lone parents with severe disabilities will become more reliant on their children for help.

It also analyses how families with a disabled child currently receiving support through the disability element of child tax credit, which is worth £57 a week, will see this payment cut to £28 a week, calculating that this is equivalent to a loss of around £1,500 a year for most families with a disabled child. The reduction will push many families below the poverty line, it warns.

Although individual aspects of welfare reform have been carefully scrutinised during parliamentary debates on the Welfare Reform Act, the charities argue that the combined effect of a series of changes is only gradually becoming clear.

“The government estimates that about 2.8m households will gain financially from the changes, and about 2m households will lose out. While some disabled people will gain from the new system, many disabled people will get very significantly less help because some of the additional support in the current system will not be provided to the same degree in universal credit,” the report states.

“We are very concerned that the scale of the cuts in support for some groups of disabled people has not yet been properly understood because the changes have been viewed in isolation.”

Sue Royston, of Citizens Advice, said the severe disability premium was a hugely important benefit, and its abolition would lead to a very significant drop in claimants’ income. “Universal credit simplifies things, but this is a simplification too far,” she said.

Neil Coyle, of Disability Rights UK, said: “Some MPs have belatedly realised that, as they cheered the introduction of the universal credit and its benefit cap, they also voted through cuts for disabled people that particularly penalise disabled children, disabled people living alone without a carer and disabled couples.

“The universal credit will end the top-up pots of support for the most disadvantaged, like the severe disability premium. A third of disabled people already live in poverty in the UK and the cuts to be imposed under universal credit plans will penalise many thousands more.”

A DWP spokesperson said the charities’ analysis was “highly selective”.

“The present system of disability support is a tangled mess of premiums and add-ons which is highly prone to error and baffling for disabled people themselves. The universal credit will deliver a simpler and fairer system, with higher payments for the most severely disabled people and improved support for carers. Transitional protection will make sure that people do not lose out just because they move onto universal credit,” the department said in an emailed statement.

Citizens Advice is calling for recipients of disability benefits to complete an online questionnaire to help improve understanding of the likely impact of these changes.

Social Care White Paper: Charities Urge Clarity

July 11, 2012

The government is setting out its White Paper on social care later, amid calls for greater clarity on how it plans to fund the system in England.

The government has said it agrees in principle with the idea of capping how much people have to pay but it will not explain how or when this will happen.

Instead it will focus on promising more equal access to council care for elderly and disabled people.

But charities and council leaders say greater clarity is urgently needed.

At the moment, each council can set its own eligibility criteria for care for the elderly and disabled.

Ministers will promise national standards by 2015 setting out who is entitled to help at home and residential care places.

There will also be a specific promise to allow those who face the largest costs to defer payment until after their death.

This loan scheme, which is already available in some areas, means those who need to go into care homes and are not entitled to state funding – anyone with assets of more than £23,250 does not get help – will have their fees paid for and then recovered from their estate.

Interest would accumulate on the loan.

Health Secretary Andrew Lansley said this meant that from April 2015 people would be able to delay selling their home to pay for residential care.

‘Unsustainable’

He told the BBC the deferred loan scheme would help people plan in the short term.

Mr Lansley added: “There are a number of big questions. I hope we will offer some real positive answers.”

And he said supported a cap “in principle”, but that work was needed to establish how it would be paid for.

But despite cross-party talks on the issue of funding and an independent review last year recommending a cap of £35,000 being placed on costs, ministers will not make specific commitments on what many believe is the key issue to reforming a system that is commonly said to be in crisis.

The cap is viewed as an essential way of getting the public to plan for old age and to encourage the insurance industry to get involved in developing policies for them, as it protects both from the risk of unlimited care costs.

Without this engagement, social care is deemed as unsustainable as free social care has already been ruled out.

The cap will be mentioned in a separate “progress report” accompanying the white paper, but it will not put forward any favoured proposals, government sources told the BBC.

Ministers have argued it is still possible legislation to reform funding will be introduced in this parliament, but many in the sector have expressed disappointment at the delay and are now arguing there needs to more detail about how the government will proceed from here.

Labour called on the government to divert some of the NHS’s underspend for social care.

“Today’s proposals are meaningless without the money to make them a reality,” shadow health secretary Andy Burnham said.

“George Osborne should get his act together and hand back half the money he has taken from the health budget.”

Sir Merrick Cockell, chairman of the Local Government Association, said: “There is an immediate crisis in social care which needs to be urgently addressed now.

“No-one would disagree that care should focus on an individual’s needs, but attempts to improve the quality of care are meaningless if there is no money for councils to provide these services.”

Michelle Mitchell, of Age UK, said: “The proposals will not live up to ambition without the solid foundation of a fair and sustainable funding structure so we need the government to make it clear how reforms will be funded and set out a clear timetable.”

And Carers UK chief executive Helena Herklots added: “Delay is not an option… families will demand an urgent timetable.”

The Red Cross’s Mike Adamson said councils were under “huge pressure” because of budget cuts and called on the government to explain how services allowing people to live at home for longer would be protected.

Paul Johnson of the Institute for Fiscal Studies told BBC Radio 4’s Today it was important that the government found an equitable way of paying for care.

“If you just look at this policy in isolation, it is essentially pensioners with reasonably significant assets who will benefit as a class,” he said.

Armed Force To Kart Force

July 11, 2012

A press release:

From the battlefield to the Guinness book of world records: a team of wounded soldiers are proving that you don’t need all your limbs to race as they attempt to set a new world record for driving the furthest distance in 24 hours in a kart with hand controls.

 

 

The team of British soldiers during service in Iraq and Afghanistan have been shot at, bombed and suffered burns and lost arms, legs and eyes, but there is no stopping them. Despite their injuries they live life to the full by competing in motorsport and are aiming for a new world record.

 

This is about overcoming grief and always finding the positive in life. The hand controls are designed by team leader Dave Player, himself former royal engineer who has been in a wheelchair following a spinal chord injury. They allow people of any disability to drive karts and compete with able bodied drivers.

 

The team of drivers are:

 

Trooper Steve Shine, who was hit by a roadside bomb while driving a tank in Iraq, which caused him to lose one of his legs and badly injure the other. Undeterred, Trooper Shine returned to duty and has since completed another tour of duty in Afghanistan

 

Lance Corporal Martyn Compton served with the Household Cavalry. An RPG attack set his vehicle ablaze whilst on patrol in Afghanistan, leaving Martyn with 70% burns. Having survived the fire, he was then shot twice whilst being rescued. He has overcome all fears that he would never walk again and will carry the Olympic torch later this year.

 

Sapper Ashley Hall was serving with the Royal Engineers when he was blown up by a roadside bomb, losing both his legs in the explosion. On arriving home he was sent to a military hospital in Birmingham where he turned down the opportunity to meet Prince Charles claiming not to deserve the honour.

 

Private Mark Allen of the Royal Anglian Regiment was on foot patrol in Afghanistan when an IED caused the loss of his legs and injuries to his fingers. Like the other drivers, he’s determined to prove that anything is possible and has also been scuba diving and skiing as part of his rehabilitation.

 

A crowd funding campaign will help to finance the feature that documents the inspirational story of the group and provides filmed proof for the Guinness book. The plan is to create a 1 hour documentary to be screened on national television. Making this record attempt is an enormous personal achievement for the drivers but their story will also inspire all of us. Help bring this moving story to the world by contributing.

 

 

http://wefund.com/project/alive-to-drive/p32342/

No Wheels On The Bus For Ray Bellisario

July 10, 2012

Until January 2011, I had been a regular traveller on London‘s buses, visiting family and friends, going shopping and making many trips to hospital. I go out less in the winter because when you are 76 the cold gets deep into your bones. Sitting static in a wheelchair, you become colder more quickly and more severely. If a bus is late, an older, disabled person suffers more.

Getting on a bus with a wheelchair involves the driver lowering a ramp that’s situated at the rear door. Bus drivers are issued with a red book, their “bible” of instruction, which provides guidance for allowing wheelchair users to travel.

My first experience of being refused access on to a bus demonstrates how drivers interpret the rules differently. I needed to keep a regular hospital appointment and, after a longer wait than usual, raised my arm to signal to the driver of the approaching bus that I wanted to get on. He stopped but refused to lower the ramp. The reason: “You have a motor on your wheelchair.” I was stunned. The driver took a photograph of me in the wheelchair then drove away.

I reached the hospital by taking a bus on another route that did take the wheelchair. Before starting my journey home, I asked at the nearest bus station if there had been changes to the red book. I was shown a copy, which clearly stated that I should have been allowed to travel. So I was utterly amazed when the next bus driver, claiming he was following red book instructions, didn’t allow me on board. Apologetic, he said: “I daren’t take the risk; another driver might.” According to him, new instructions had been given a couple of months earlier.

By this time my wheelchair’s battery was worryingly low. Calling a minicab wouldn’t help; few accommodate wheelchairs. I had my two walking sticks, but no safe place to leave my wheelchair. Desperate, I pleaded with any driver going in my direction. Eventually, I was reluctantly allowed on to a bus. Getting off, severely cold, with my home still half a mile away, I was most anxious about the battery. It rapidly ran flat. Stuck, I again considered a cab but the same issues remained of an accessible vehicle and where to safely leave the wheelchair. I resorted to the indignity of asking someone to push me. After several refusals, a willing lad did. I was in pain from the cold as well as from my illness. My discomfort and anger distressed me.

I complained to the London mayor, Boris Johnson, as head of Transport for London (TfL) and to Maria Miller, the minister for disabled people. They ignored my letters, as did the bus operators. Cock-up after cock-up followed.

A week later, I was repeating my journey to hospital. Another driver says: “Your wheelchair is not allowed on the bus.” This time, more prepared, I put my foot in the doorway and told the bus driver Rosa Parks-style that, if I was refused, the bus wasn’t going anywhere. A standoff followed. The driver said: “I don’t care, I get paid anyway.” He wouldn’t call his control room. Despite my apologies, some of the now-delayed passengers rounded on me. They forced the driver to call his controller. The controller sought advice and told the driver he must allow me on to the bus. The driver then made repeated efforts to lower the ramp but it was jammed. He had no alternative but to take the bus out of service. All the passengers had to get off. Some became angry with me. “It’s all your fucking fault, you’ve made everyone fucking late,” I was told.

When the next bus came along, the driver failed to observe correct procedure to allow a wheelchair user on before the other passengers. As a result, his bus filled up with people standing in the space for a wheelchair and a pushchair, making it difficult to fit on. More abuse rained down on me. The most vocal man, crammed against my wheelchair, expressed hypocritically: “I feel for you, I feel for all disabled people.” I made no effort to reply.

The next hospital appointment brought worse driver trouble. Before even reaching the stop, the bus driver waved at me in dismissive fashion. Opening the doors to shout, his loud message was that I was not getting on. To prevent the doors closing, I put my foot in. He quickly got out of his seat and repeatedly stamped on my foot and kicked me in the shin while operating the doors to trap my ankle. Horrified passengers shouted at him to stop. Finally, he pulled the doors open with his hands, then kicked my very sore foot off the step. Back in his seat, he drove away.

I called 999 to report the assault, but they said they had no idea when I would get police assistance. Cold and traumatised, I couldn’t wait around. I got another bus to the hospital in a thoroughly confused state, but when I got there I was too traumatised to go ahead with the cystoscopy.

The driver who had attacked me earlier drove the return bus, which was empty. Many people were waiting at the bus stop. Before allowing anyone on, he shouted to me: “Do you remember me? I told you, you can’t travel on my bus.” A frail woman stepped forward and shouted: “Who do you think you are, kicking a disabled old man?” When he tried to deny it, she said she had seen and heard everything as she had been sitting behind him on my previous journey. Angrily, she reminded him what he had done. He then changed his aggressive tone, claiming there had been no space. She and I denounced him as a liar. Others, too, had seen the entire incident and they contradicted him. This hostile scene lasted around nine minutes. The driver eventually backed down and asked meekly: “Do you want to get on my bus?” He refused to give me his number so I that I could report him to his employer. The woman willingly provided her address. Others, also upset by the attack, said they would be witnesses.

In total, on 28 separate occasions over the last 18 months, I have been refused on to a bus or have had objections from bus drivers. Excuses included luggage and pushchairs occupying wheelchair space. I was left stranded three times in one day. Drivers withhold their numbers. Delayed passengers shout: “I don’t care about your fucking rights.” Careless drivers stop where ramps are then immobilised. I have been refused the right to get off a bus, told to get off another, photographed, made to suffer discomfort when attending tests, abused, sniggered and shouted at.

Disabled people should not have to face these ordeals when they are travelling. The angst, annoyance, distress and indignity I and others are put through is wrong. I have had enough. I have set up the Ray on Rights campaign and I’m taking the bus companies involved, TfL and the minister for disabled people to court for breaching the law. The Equality Act 2010 obliges everyone who provides a service to the public, including bus operators, to take reasonable steps to adjust their services for disabled people and prohibits discrimination against disabled people in a range of circumstances, such as the use of public transport. The defendants have also breached their duty of care under numerous other laws and the Universal Declaration of Human Rights.

I want compensation and justice.

Government Confirms 27 Remploy Factory Closures

July 10, 2012

Remploy, which provides employment opportunities for disabled people, is to close half its 54 factories, the government confirmed on Tuesday.

Maria Miller, minister for disabled people, told MPs that the £320m budget for disabled employment services could be spent more effectively.

The 27 loss-making factories are to close between August and mid-December, putting 1,421 jobs at risk.

Remploy said nine other factories had received bids from potential buyers.

Workers at Remploy’s 54 factories voted in May to go on strike in protest at the planned closures.

Phil Davies, national officer of the GMB union, said: “To close these factories that employ disabled people in the present economic climate is a sentence to a life of unemployment and poverty.

“The strikes will go ahead on July 19 and 26 as planned and should be a rallying point, giving for each local community the opportunity to stand behind these disabled workers who will be facing the scrapheap.”

The government has set aside £8m to support workers who are made redundant.

Employment opportunties

According to the Department for Work and Pensions, the factories lost £68.3m last year.

Remploy factories were established in 1945 to give employment opportunities to disabled people.

Enterprises range from furniture and packaging manufacturing to recycling electrical appliances.

The closures follow recommendations by Disability Rights UK, which carried out an independent review into the way the government spends its disability employment budget.

It recommended that the government should divert funding to support individuals, rather than subsidising factory businesses.

The 27 Remploy factories to close are: Acton, Ashington, Barking, Birkenhead, Bolton, Cleator Moor, Gateshead, Leeds, Leicester, Manchester, Newcastle, North London, North Staffordshire, Oldham, Penzance, Pontefract, Preston, Southampton, Spennymoor, Wigan, Worksop, Aberdare, Abertillery, Merthyr Tydfil, Swansea, Wrexham and Wishaw, plus operations at Boston Spa.

The factories attracting bids are: Aberdeen, Barrow, Bridgend, Bristol, Chesterfield, Croespenmaen, Edinburgh, Poole and Springburn, plus the Cook with Care business.

Nathan Stephens Makes TeamGB

July 10, 2012

World Paralympic javelin record holder Nathan Stephens is among a record 38-strong Welsh contingent in the Team GB squad at the London Paralympic Games.

The F57 javelin world champion, who raised the world record to 41.37 metres at the 2011 Czech Athletics Open, is a strong medal hope in a 13-strong Welsh athletics squad.

At Beijing, 31 Welsh athletes competed.

Tracey Hinton, who recently won two golds at the European Championships, will be competing in her sixth Games.

The 42-year-old, who is blind, made her debut in Barcelona in 1992 and has won three silvers and three bronzes during her Paralympic career so far.

Both are among 13 Welsh participants named in the British Paralympic Association’s 49-strong athletics team for the Games with 50 days to go to the start of the showpiece.

The young Welsh team includes six members that are aged 21 or under.

The athletics announcement completes the line up for the ParalympicsGB team in London which will feature 288 athletes, alongside a further 13 team members, including sighted goalkeepers, tandem riders and guide runners.

Scientist Attempts To Convert Stephen Hawking’s Brainwaves Into Speech

July 10, 2012

An American scientist is to unveil details of work on the brain patterns of Prof Stephen Hawking which he says could help safeguard the physicist’s ability to communicate.

Prof Philip Low said he eventually hoped to allow Prof Hawking to “write” words with his brain as an alternative to his current speech system which interprets cheek muscle movements.

Prof Low said the innovation would avert the risk of locked-in syndrome.

Intel is working on an alternative.

Prof Hawking was diagnosed with motor neurone disease in 1963. In the 1980s he was able to use slight thumb movements to move a computer cursor to write sentences.

His condition later worsened and he had to switch to a system which detects movements in his right cheek through an infrared sensor attached to his glasses which measures changes in light.

Because the nerves in his face continue to deteriorate his rate of speech has slowed to about one word a minute prompting him to look for an alternative.

The fear is that Prof Hawking could ultimately lose the ability to communicate by body movement, leaving his brain effectively “locked in” his body.

In 2011, he allowed Prof Low to scan his brain using the iBrain device developed by the Silicon Valley-based start-up Neurovigil.

Prof Hawking will not attend the consciousness conference in his home town of Cambridge where Prof Low intends to discuss his findings, but a spokesman told the BBC: “Professor Hawking is always interested in supporting research into new technologies to help him communicate.”

Decoding brainwaves

The iBrain is a headset that records brain waves through EEG (electroencephalograph) readings – electrical activity recorded from the user’s scalp.

Prof Low said he had designed computer software which could analyse the data and detect high frequency signals that had previously been thought lost because of the skull.

“An analogy would be that as you walk away from a concert hall where there’s music from a range of instruments,” he told the BBC.

“As you go further away you will stop hearing high frequency elements like the violin and viola, but still hear the trombone and the cello. Well, the further you are away from the brain the more you lose the high frequency patterns.

“What we have done is found them and teased them back using the algorithm so they can be used.”

Prof Low said that when Prof Hawking had thought about moving his limbs this had produced a signal which could be detected once his algorithm had been applied to the EEG data.

He said this could act as an “on-off switch” and produce speech if a bridge was built to a similar system already used by the cheek detection system.

Prof Low said further work needed to be done to see if his equipment could distinguish different types of thoughts – such as imagining moving a left hand and a right leg.

If it turns out that this is the case he said Prof Hawking could use different combinations to create different types of virtual gestures, speeding up the rate he could select words at.

To establish whether this is the case, Prof Low plans trials with other patients in the US.

Intel’s effort

The US chipmaker Intel announced, in January, that it had also started work to create a new communication system for Prof Hawking after he had asked the firm’s co-founder, Gordon Moore, if it could help him.

It is attempting to develop new 3D facial gesture recognition software to speed up the rate at which Prof Hawking can write.

“These gestures will control a new user interface that takes advantage of the multi-gesture vocabulary and advances in word prediction technologies,” a spokeswoman told the BBC.

“We are working closely with Professor Hawking to understand his needs and design the system accordingly.”

Girl With Half A Heart Has Her DLA Cut

July 10, 2012

The way benefit payments are assessed for thousands of children with a rare heart condition are fundamentally flawed, claims a children’s charity.

Little Hearts Matter said it was concerned about the case of a nine-year-old girl from Newport, who has hypoplastic left heart syndrome.

It claims the UK government is incorrectly withdrawing benefits from children with the illness.

The UK government says decisions are based on medical evidence.

Morgan Edwards, from Newport, has the rare condition.

Children born with the illness have half a heart, which means they tire easily and need heart and lung transplants when they are as young as 11 years old.

In addition to this, Morgan has protein losing enteropathy, which means she loses protein through her stomach lining.

This has to be compensated for with protein supplements and lots of fresh meat and fish.

Her family was receiving nearly £500 a month in disability living allowance, but this has been reduced to £80.

Her mother, Kay Edwards, said they were now going into debt to pay for Morgan’s care, which includes regular trips to Birmingham Children’s Hospital.

Ms Edwards was also receiving a carers’ allowance – worth £200 – because she says she is unable to hold down a job due to Morgan’s condition. This benefit payment has been stopped completely.

She said: “If we didn’t give her her high protein diet, if we didn’t buy her the things that she needs, her health would suffer from it, so I think she deserves the DLA (disability support allowance).

‘Disgusting’

“I think it’s wrong that they’ve actually, point blank, said no to her. It’s pretty disgusting if you ask me.

“It’s not easy on Morgan, I think, more than anything. It’s just really hard, and I don’t want to plead poverty. I think she deserves the money to make her life easier.”

Little Hearts Matter said the system was inflexible, and it was leading to wrong decisions all over the UK.

The Department of Work and Pensions (DWP) said that as a person’s needs changed, or they became more independent as they got older, they might not receive disability support allowance.

But it said decisions were based on any medical evidence supplied.

Morgan’s doctor has written to the DWP explaining the debilitating nature of her illness, but the government department has not changed its position.

Mrs Edwards has appealed the decision, but this was rejected so she is now waiting to go to a tribunal.

Suzie Hutchinson, chief executive of Little Hearts Matter, said: “Children born with single ventricular heart disease don’t have a normal life.

“They only have half the energy levels of other children of their age. They have problems climbing the stairs, they have problems walking outside, they haven’t got the energy even to eat big meals, they need lots of little meals. They need a lot of added care, and they need help with mobility as they’re getting older.

“So, yes, children with single ventricular heart disease should be getting disability living allowance.”

Charity Sense Calls For Support

July 10, 2012

A charity representing people who have problems with both hearing and seeing has urged the Government to “stop stalling” on social care reforms, after a survey found that one in five deafblind people receive no support at all.

The Fair Care for the Future report was launched on Tuesday by Sense, a day ahead of the publication of the Government’s White Paper on health and social care in England, expected to outline proposals to extend support for the disabled.

The charity said that many of the country’s 356,000 deafblind people are left “imprisoned in their own home” by the lack of social care support.

And many have experienced cuts in support or have been asked to pay more for it out of their own pockets, forcing them increasingly to rely on family members – including children – to act as carers.

According to the report, almost half of the deafblind people surveyed have never been assessed properly for social care. Others struggled to arrange an assessment, with one saying it took five years.

One 24-year-old deafblind man told the report: “Without support I’m a prisoner stuck at home, depressed all the time and doing nothing. I would like to do more and attend college, but they failed to provide me with the additional support they promised so I couldn’t continue.”

Sense head of policy Sue Brown said: “As this report shows, deafblind people say that without support they are trapped in their homes, without access to employment, and many get depressed and ill. It is unthinkable that human beings can be abandoned in this way.

“Deafblind people have difficulties with both their eyes and ears and many need support to do basic things that most people take for granted – going to the shops, buying food, opening a letter, going to the doctors.”

Sense is calling for urgent reforms to create a clear, fair and properly-funded legal framework for social care.

The charity said that the new system must recognise deafblind people’s need for communication support, such as an interpreter who can spell words out on the palm of their hands, assistance with phone calls and reading letters or a guide so they can leave the house.

Disablism On Big Brother Prompts Three OfCom Complaints

July 10, 2012

Two incidents of racism prompt over 1000. Yet again, racism wins over disablism where there should be complete equality.

Media watchdog Ofcom is investigating more than 1,000 complaints relating to three separate incidents on Channel 5’s Big Brother.

There were 1,108 complaints about an incident involving contestant Conor McIntyre, who was seen verbally abusing housemate Deana Uppal behind her back.

Some viewers felt his tirade amounted to bullying.

There were also 114 complaints about an incident involving contestant Caroline Wharram, which some felt was racist.

She described a black housemate, Adam Kelly, as a “ridiculous gorilla” with “no sanitation”.

Channel change

There were a further three complaints to Ofcom about an exchange broadcast on the programme’s sister show, Big Brother’s Bit on the Side.

Former Big Brother contestant Victor Ebuwa used the word “retard” to describe contestants on this year’s show, prompting three complaints.

Ofcom is now looking into whether any of its broadcasting codes have been breached.

Channel 4 was rapped by Ofcom after broadcasting the word “retard” on its show Big Brother’s Big Mouth back in 2010.

The reality show was launched on UK television in 2000 and was a huge hit for Channel 4 for 10 years.

Channel 5 started showing the series in 2011.

Paddy Doherty, from TV series Big Fat Gypsy Wedding, won the first Celebrity Big Brother to be broadcast on Channel 5 last year.

Contract manager Aaron Allard-Morgan was the last non-celebrity winner in November.

Magician Dynamo Is DisAbled

July 9, 2012

I heard of him exactly one minute ago but in that minute, I read a very interesting article that describes his life and his many magical achievements.

Oh, and by the way, he has severe Crohn’s, which makes him DisAbled.

Gene Flaw Explains Why The Drugs Don’t Work For MS

July 9, 2012

Scientists have identified why a once-promising class of drugs do not help people with multiple sclerosis.

An Oxford University team say an genetic variant linked to MS means the drugs which work for patients with other autoimmune diseases will not work for them.

The team, writing in Nature, say the drugs can actually make symptoms worse.

Experts say the work shows how a person’s genetic make-up could affect how they responded to treatment.

The drugs, called anti-TNFs, work for patients with rheumatoid arthritis and inflammatory bowel disease, but they have not done so for patients with MS and researchers were unsure why.

Mimicking

The Oxford University team looked at one particular genetic variant, found in a gene called TNFRSF1A, which has previously been associated with the risk of developing MS.

The normal, long version of the protein sits on the surface of cells and binds the TNF signalling molecule, which is important for a number of processes in the body.

But the team discovered the variant caused the production of an altered, shortened version which “mops up” TNF, preventing it from triggering signals – essentially the same thing that TNF blocking drugs do.

This explains why a study 10 years ago found the drugs make MS patients significantly worse and exacerbate the disease, the researchers suggest.

Professor Lars Fugger of the Nuffield Department of Clinical Neurosciences, who led the work, said: “The hope has been that analyses of the whole human genome would lead to findings that are clinically relevant.

“We show that this is possible. It’s one of the first such examples, certainly in autoimmune disease.”

He added: ‘Whilst the TNFRSF1A gene variant is linked to a modest risk of developing MS, the drug that mimics the effect of the variant has a considerably greater impact.

“The effects of genetic variants influencing disease risk or resistance can be amplified by drugs. This has often been completely overlooked, but will be critical for using genetic findings in a medical context.”

Nick Rijke, director of policy and research at the MS Society, said: “There are many genes associated with MS, but we know little about the role they play or the influence they have on the condition.

“This important study has shown that some of your genes can play a part in deciding whether or not you respond to a treatment.

“In the future this could help ensure that people with MS are offered the drug treatments that are most likely to work for them.”

Wimbledon 2012: The Forgotten British Runners-Up

July 9, 2012

Yesterday, I, along with millions of others, sat on the edge of my sofa willing Andy Murray to win Wimbledon. I am as disappointed as anyone else that today, Murray is not minting success.

However, there were two other British runners-up at Wimbledon this year. Unlike Andy Murray, they wheeled through the place almost unnoticed.

Lucy Shuker and Jordanne Whiley were beaten by Jiske Griffioen and Aniek van Kootin in the final of the women’s wheelchair doubles at Wimbledon.

The British pair lost in straight sets 6-1 6-2 to last year’s runners-up on Court Three.

Shuker and Whiley were the first all-British wheelchair tennis pair to make a Wimbledon final, but the Dutch partnership proved too strong.

“We did pretty well just to reach the final,” said Shuker.

“It’s a shame we couldn’t push Jiske and Aniek a bit harder but it was a great experience and we still have a few more tournaments to work on our partnership ahead of the Paralympics in September,” added Shuker, a finalist in 2009 and 2010 with Australian Daniela di Toro.

The pair reached the semi-finals last year and 20-year-old Whiley hoped their achievement will have raised awareness of their sport in the UK even further.

“It was my first time in a final at Wimbledon and I won’t forget the experience,” she said.

“The crowds were amazing and hopefully it’s made the British public more aware of what a brilliant sport wheelchair tennis is, whether to watch or try yourself.”

(Same Difference also sends sincere congratulations to the winners of the men’s wheelchair doubles tournament).

Nick Danagher Dies

July 8, 2012

I was sad to read this Tweet:

Nick is a freelance consultant in Disability Equality Issues. He has a background in developing and managing disabled people’s organisations. As a member of Equality 2025, the UK Advisory Network on Disability Equality, he acts as a consultant to Government on a wide range of policy initiatives, as well as delivering advice and project management to public authorities.

He is a keen sports fan and is a lifelong supporter of Queens Park Rangers, something which has taught him patience, tolerance and eternal optimism, all of which he says come in useful as a board member of Surrey Coalition of Disabled People!

My thoughts are with all who knew Nick at this difficult time.

Paralympic Gold Medal Winners To Feature On Stamps

July 8, 2012

Every British athlete who wins gold at the London 2012 Paralympics will appear on a stamp.

Royal Mail said the set of six first class stamps showing groups of winners, will be issued weeks after their victory.

Apart from the London 2012 Paralympics logo and the Queen’s Head, the look of the stamp has not been confirmed.

Royal Mail is also donating £200,000 which will be split equally between the ParalympicsGB gold medallists.

Fitting tribute

British Paralympic Association chief executive Tim Hollingsworth said: “Commemorating our gold medallists’ achievements on a set of stamps is a first in the history of the Paralympic Games.

“It is a fitting tribute which demonstrates how far the movement has come in recent times.”

The Paralympics can be traced back to a competition for the war wounded at Stoke Mandeville Hospital in 1948

Baroness Grey-Thompson, Britain’s 11-time Paralympic athletics champion, said: “The return of the Paralympic Games to the UK makes it an even more special event and I look forward to celebrating every win with the team.”

Royal Mail’s chief executive Moya Greene described the stamps as “a wonderful way” for the nation to celebrate ParalympicsGB’s “amazing achievement”.

The six-pack will cost £3.60 and go on sale from September 27 to December 31.

The Paralympics run from 29 August to 9 September. There are hopes that ParalympicsGB may repeat the medal success of the 42 golds it won at Beijing 2008 to come second in the medals table.

Writer Garcia Marquez Has Dementia

July 7, 2012

The brother of Gabriel Garcia Marquez says that the Colombian writer and winner of the 1982 Nobel Prize for Literature is suffering from dementia.

Jaime Garcia Marquez told students at a lecture in the city of Cartagena that his brother, who is 85, phones him frequently to ask basic questions.

“He has problems with his memory. Sometimes I cry because I feel like I’m losing him,” he said.

He says the author has stopped writing altogether.

The BBC’s Arturo Wallace in Colombia said there have been rumours about Mr Garcia Marquez’ memory problems.

Jaime Garcia Marquez, his younger brother, is the first family member to speak publicly about it.

Invited to talk about his relationship with Gabo, as the writer is affectionately known in Colombia, Jaime said he could not hold back from talking about his illness anymore.

“He is doing well physically, but he has been suffering from dementia for a long time,” he said. “He still has the humour, joy and enthusiasm that he has always had.”

The 1967 masterpiece of magic realism, One Hundred Years of Solitude, begins with the story of a family unable to care for their senile grandfather.

“It is a disease that runs in the family,” said Jaime Garcia Marquez.

Gabriel Garcia Marquez currently lives in Mexico and has not made many public appearances in recent years.

His novels include Love in the Time of Cholera, Chronicle of a Death Foretold and the The General in His Labyrinth.

He is best known for One Hundred Years of Solitude, which has sold more than 30 million copies and been translated into more than 30 languages.

How Social Care Let Two People With MS Down

July 7, 2012

With an ageing population and pressure on local budgets, there are growing concerns over how costs are to be met for caring for the elderly and the disabled.

A draft bill on overhauling social care in England is due to be published next week.

Alison Holt talks to people about their experiences of the current system and how it should change.

US Scientists Develop ‘Most Realistic’ Prosthetic Legs

July 6, 2012

US experts have developed what they say are the most biologically-accurate robotic legs yet.

Writing in the Journal of Neural Engineering, they said the work could help understanding of how babies learn to walk – and spinal-injury treatment.

They created a version of the message system that generates the rhythmic muscle signals that control walking.

A UK expert said the work was exciting because the robot mimics control and not just movement.

The team, from the University of Arizona, were able to replicate the central pattern generator (CPG) – a nerve cell (neuronal) network in the lumbar region of the spinal cord that generates rhythmic muscle signals.

The CPG produces, and then controls, these signals by gathering information from different parts of the body involved in walking, responding to the environment.

This is what allows people to walk without thinking about it.

The simplest form of a CPG is called a half-centre, which consists of just two neurons that fire signals alternatively, producing a rhythm, as well as sensors that deliver information, such as when a leg meets a surface, back to the half-centre.

‘New approach’

The University of Arizona team suggests babies start off with this simplistic set-up – and then over time develop a more complex walking pattern.

They say this could explain why babies put onto a treadmill have been seen to take steps – even before they have learnt to walk.

Writing in the journal, the team says: “This robot represents a complete physical, or ‘neurorobotic’ model of the system, demonstrating the usefulness of this type of robotics research for investigating the neuropsychological processes underlying walking in humans and animals”.

Dr Theresa Klein, who worked on the study, said: “Interestingly, we were able to produce a walking gait, without balance, which mimicked human walking with only a simple half-centre controlling the hips and a set of reflex responses controlling the lower limb.

“This underlying network may also form the core of the CPG and may explain how people with spinal cord injuries can regain walking ability if properly stimulated in the months after the injury.”

Matt Thornton, gait analysis laboratory manager at the UK’s Royal National Orthopaedic Hospital, said the work was “an interesting development”.

He added: “Previous robotic models have mimicked human movement: this one goes further and mimics the underlying human control mechanisms driving that movement.

“It may offer a new approach to investigate and understand the link between nervous system control problems and walking pathologies.”

Mr Thornton said existing systems for analysing how people walk, so-called gait analysis performed by the RNOH and others, accurately measure hip, knee, and ankle joint movements in 3D while patients walk on a treadmill. Patients react differently, depending on their condition.

He added: “At present this type of analysis provides us with detailed information about the joints, bones and muscles.

“The robotic model may go one step further in linking these problems to the nervous system, which actually controls the movement.

“The implications for increased understanding of, for example, patients with spinal cord injury are very exciting.”

Gary McKinnon Case Adjourned For Medical Report

July 5, 2012

Computer hacker Gary McKinnon has been given two weeks by the High Court to decide if he will take a medical test to see if he is fit to be extradited.

Experts say there is a high risk Mr McKinnon, who has Asperger’s syndrome, could kill himself if extradited, but ministers want a new report.

Home Secretary Theresa May is said to be “very near” a decision.

Mr McKinnon, from north London, admits hacking US military computers but says he was looking for evidence of UFOs.

If he is convicted in the US, he could face up to 60 years in jail.

‘Highly detrimental’

Lawyers for the home secretary said she was “extremely concerned” by the conclusion from one medical report that said Mr McKinnon was unfit to plead.

The High Court has to decide how much time should be given before Mrs May announces whether or not Mr McKinnon, 46, should be extradited, the BBC’s Ben Geoghegan says.

If the home secretary decided he can be extradited, Mr McKinnon’s legal team would be likely to challenge the decision by asking for a judicial review, our correspondent says.

On Thursday, Mr McKinnon’s lawyer, Ben Cooper said his client would not wish to undergo another medical test. He said it would be “highly detrimental to [Mr McKinnon’s] fragile mental state”.

Mr McKinnon now has until 19 July to make a final decision and there will be a further hearing at the High Court on either 23 or 24 July.

Mr McKinnon, who hacked into the US computers in 2002, has been fighting extradition since 2006.

The High Court expressed concern over how long Mr McKinnon’s case was taking to return to court earlier this year.

Spot The Dog To Be Made Accessible To Blind Preschoolers

July 5, 2012

I’ve just heard about this. I loved Spot and friends as a child, so to me, it is progress.

Oscar Pistorius Will Participate In The 2012 Olympics

July 5, 2012

A DisAbled person’s dream has come true. I, for one, am thrilled for him.

Oscar Pistorius is set to be the first double amputee runner at the Olympic Games after being picked by South Africa for the 400m at London 2012.

The 25-year-old has also been selected for the 4x400m relay squad.

“Today is truly one of the proudest days of my life,” said Pistorius, who will also compete in the Paralympics.

“It is a real honour and I am so pleased that years of hard work, determination and sacrifice have all come together.”

Pistorius was born in Johannesburg and had both legs amputated below the knee when he was 11 months old because of a congenital condition that meant he was born without lower leg bones

Pistorius appeared to have missed the chance of competing in the individual 400m after he narrowly failed to clock the ‘A’ standard time for a second time as required by South Africa’s Sports Confederation and Olympic Committee (Sascoc).

But his inclusion in the relay team opened up his chance to also race in the individual event.

“As I have said many times before, we are not taking passengers to London,” said Sascoc president Gideon Sam.

“Everyone has met selection criteria and are genuine Olympic Games material, either now or for 2016. I wish them all the best.”

Pistorius ran in the individual 400m at the 2011 World Championships in South Korea but did not progress beyond the semi-finals.

He also ran in the relay but, after running in the heats, he was omitted from the final as South Africa went on to claim silver.

Pistorius is known as the ‘Blade Runner’ because of the prosthetic carbon fibre limbs he runs with. He was cleared to compete against able-bodied athletes in 2008 when an IAAF ruling that his blades gave him an unfair advantage was overturned by the Court of Arbitration for Sport (CAS).

Pistorius will also compete at the Paralympic Games in London in the 100m, 200m, 400m and 4x100m relay.

“I have a phenomenal team behind me who have helped get me here and I, along with them, will now put everything we can into the final few weeks of preparations before the Olympic Games where I am aiming to race well, work well through the rounds, post good times and maybe even a personal best time on the biggest stage of them all,” added Pistorius.

“I am also hugely excited to then be competing to defend my three Paralympic titles at the Paralympic Games.

“I believe we will see some amazing times posted and I am very much looking forward to what will be an incredible Olympics and Paralympics in London.”

 

Scanner Could Make Robot Avatars A Reality For Paralysed People

July 5, 2012

Robot avatars have got a step closer to being the real world doubles of those who are paralysed or have locked-in-syndrome.

Scientists have made a robot move on a human’s behalf by monitoring thoughts about movement, reports New Scientist.

The man-machine link joined a man in a brain scanner in Israel and a robot wandering a laboratory in France.

The person controlling the robot could also see through the eyes of his electronic surrogate.

The researchers are now working on ways to make the man-machine link more sensitive and to let people speak via the robot.

Mirror test

The research project connected a robot to a man having his brain scanned using fMRI (Functional Magnetic Resonance Imaging). This monitors blood flowing through the brain and can spot when areas associated with certain actions, such as movement, are in use.

Using brain scanners is a step beyond current efforts to link up men and machines. Much recent work involved teleoperated robots in which humans manipulate controls, such as joysticks, to make a robot move.

By contrast, the scanning approach is more subtle and attempts to fool the human subject into thinking that they are embodied in the robot.

The experiment helping to prove the technology works linked up student Tirosh Shapira who was in a lab at Bar-Ilan University, Israel, with a small two-legged robot thousands of kilometres away at Beziers Technology Institute in France.

Prior to connecting the two, researchers made Mr Shapira think about different sorts of movements and developed software that could quickly spot his intention.

The result, reported the magazine, was that he could control the robot in almost real time.

The illusion of embodiment was tested by surprising Mr Shapira with a mirror so he could see his robot self – a test that convinced him he was present in the French lab.

The next step for the research is to refine it to use a different type of scanning that can work using a skull cap rather than an fMRI machine that a person has to lie in. The robot used to represent a human is to be upgraded to a version that has a similar stature and gait to a real person.

The research is part of an international project called Virtual Embodiment and Robotic Re-Embodiment that aims to refine ways to link people and surrogates in both virtual environments and the real world.

Work is being done on medical applications of the technology but the researchers warned that it was a long way from being able to help anyone yet.

Hearing Aid Hackers

July 5, 2012

If you are short-sighted, usually all it takes is a visit to an optician to get a pair of spectacles to help restore the world to sharp detail.

But if you suffer hearing problems, visiting an audiologist just the once will probably not restore sounds to crisp clarity.

The consequent frustration is driving some people with the appropriate expertise to hack into their own hearing aids to carry out DIY improvements.

Brian Moore, professor of audiology at the University of Cambridge, explained: “It’s not the same as spectacles where you know you have the right prescription.

“With a hearing aid you can have an initial prescription but you will need to do some fine-tuning around that afterwards to satisfy the individual person.”

He said the tuning process was frustrating because of the difficulty in making hearing aids work within different levels of noise.

Catering for young

Now some tech-savvy users are taking the initiative.

“Hearing aids are becoming a more and more interesting target not only to hack, but also simply to connect them to all kinds of consumer hardware and make the experience more seamless,” said Helga Velroyen, a Munich-based software engineer who has been at the forefront of efforts to modify hearing aids.

Her interest in the topic was sparked when her own hearing started to degrade a few years ago.

In Germany, she said, the average age of a person buying their first hearing aid was 70, meaning that most equipment had been kept simple to cater for this ageing audience, she added.

This desire for simplicity meant that manufacturers were often reluctant to introduce features common in other consumer electronics.

“Young people who grew up with computers and have a smartphone have the desire to have more control over their devices and would not mind a more sophisticated interface,” Ms Velroyen told the BBC.

In addition, she said, the design of each hearing aid was different and its parts and accessories were not interchangeable with other brands.

“I would like to have the freedom to choose hearing aids and peripheral hardware independently according to what I consider the best quality,” she said. “I don’t want to be caged in a hell of proprietary dependencies.”

Frustrated hackers have made their own connectors that link their hearing aids to Bluetooth headsets.

Others have set up fake companies to get hold of the equipment audiologists use to tune the devices. Some have established a self-tuning movement that aims to let people customise their hearing aids to match their particular impairments.

DIY design

For some, this tinkering does not go far enough. Edinburgh-based engineer Martin Ling has set up a project to produce one in which all the parts and the code it runs would be accessible to anyone to work on and improve.

“My partner is quite deaf and has been using hearing aids for about 20 years,” he said. “That’s where my interest comes from.”

Mr Ling’s early attempts to hack a hearing aid involved dismantling one of his partner’s old ones and wiring it up to a laptop to watch how it handled sound. Now he is working on a design built from scratch.

“We could make a small number of these so we could get hardware in the hands of people that wanted to test it,” he said. “Then as the signal-processing ideas get pinned down we can start to work on miniaturising it.”

Mr Ling said he was considering starting a crowd-funded project on Kickstarter or a similar site to build the first prototypes.

“A lot of this comes down to signal processing and software engineering problems,” he said.

Ideally, he said, the result would be a hearing aid that a person would be able to adjust to deal with their particular hearing problem.

“This idea that you are not qualified to tune your own hearing aid that you are wearing for hours and hours every day seems ridiculous,” he said.

Dr Kevin Munro, professor of audiology at the University of Manchester, was sceptical about Mr Ling’s chances of producing a DIY device.

“They are not the sorts of things you can throw together in a garden shed,” he said, adding that hearing-aid makers invested hugely in research and development to produce the gadgets on sale now.

Despite the scepticism, Ms Velroyen has a vision for what a future hearing aid would be like: it would have a long battery life, work even if its owner went swimming or to the gym and would link seamlessly with a mobile phone to adjust its sensitivity depending on where its owner was and who they were talking to.

“Development is way too slow,” she said. “I would like to see much more progress on that.”

Changes To The UK Braille Code

July 5, 2012

https://twitter.com/Holly1994/status/220482361064824832

With pleasure, Holly.

Remploy Workers Vote For Strike Action

July 5, 2012

Disabled workers at UK factories have voted to go on strike against plans to close their workplaces.

Remploy – which provides work for people with disabilities – said earlier this year it was planning to close 36 of its 54 factories. At least 1,700 jobs are at risk.

Nearly 80% of members of trade union GMB employed by Remploy have voted for strike action, a statement said.

About 60% of members of another union, Unite, were also in favour.

Both have a combined membership of about 3,500 Remploy employees.

“We now have the prospect of Remploy workers taking strike action to defend their jobs,” said Kevin Hepworth, Unite National Officer.

“By taking strike action, they are trying to avoid their certain destiny of being chucked on the economic scrapheap. They deserve the support of all trade unionists and the public in Britain,” he added.

‘Life of poverty’

Phil Davies, GMB National Secretary said: “These closures are going ahead without any consideration of the feelings and needs of these workers and their families or their future job prospects.”

“To close a factory that employs disabled people in the present economic climate is a sentence to life of unemployment and poverty,” he added.

The unions said they would give Remploy seven days notice with immediate effect “for a programme of strikes and other action”.

Remploy factories were established 66 years ago as part of the creation of the welfare state.

Workers are employed in enterprises that vary from furniture and packaging manufacturing to recycling electrical appliances and operating CCTV systems and control rooms.

The government has said the sites could be closed by the end of the year as they were not financially viable.

‘Non-viable’

“Non-viable” Remploy factories should close, with the money, part of a £320m annual budget for disability employment, re-invested into other schemes to help disabled people find work, according to the government.

It follows an independent review conducted by Liz Sayce, chief executive of Disability Rights UK, into the way in which the government spends its disability employment budget.

Her report recommended that the government funding should focus on support for individuals, rather than subsidising factory businesses.

The cash should be diverted into the Access to Work fund, which provides technology and other help to firms for the disabled, whose average spend per person is £2,900, she said.

The Department for Work and Pensions said about a fifth of that budget was currently spent on Remploy factories, but added that almost all of the factories were loss-making and last year lost £68.3m.

Remploy factories in Wales will be among those hardest hit, with proposals to close seven of its nine factories, affecting up to 272 staff.

The 36 Remploy factories due to close are: Aberdare, Aberdeen, Abertillery, Acton, Ashington, Barking, Barrow, Birkenhead, Bolton, Bridgend, Bristol, Chesterfield, Cleator Moor, Croespenmaen, Edinburgh, Gateshead, Leeds, Leicester, Manchester, Merthyr Tydfil, Motherwell, Newcastle, north London, North Staffs, Oldham, Penzance, Pontefract, Poole, Preston, Southampton, Spennymoor, Springburn, Swansea, Wigan, Worksop and Wrexham.

Eric Sykes Dies Aged 89

July 4, 2012

Eric Sykes, one of Britain’s best-loved comedy actors and writers, has died at the age of 89, his manager has said.

“Eric Sykes, 89, star of TV, stage and films, died peacefully this morning after a short illness,” said Norma Farnes. “His family were with him.”

Sykes found fame in a series of TV sitcoms from the 1950s, including Sykes And A… alongside Hattie Jacques.

Sir Bruce Forsyth paid tribute to the star, calling him “one of the greats of comedy in this country”.

“He was universally loved here,” the entertainer continued. “He was just one of the funniest men ever.”

Comedian Stephen Fry wrote on Twitter: “Oh no! Eric Sykes gone? An adorable, brilliant, modest, hilarious, innovative and irreplaceable comic master. Farewell, dear, dear man.”

League of Gentlemen star Mark Gatiss said: “The wonderful Eric Sykes has left us. A giant of comedy and a gentleman – funny to his very core. RIP.”

Comic Robin Ince paid tribute to “the last link to many of the most important early post war comedians” and “a great entertainer”.

Born in Oldham, Sykes started his career writing radio material for comedians including Frankie Howerd, Tony Hancock and The Goon Show.

He stepped into the spotlight with his own TV shows including Dress Rehearsal in 1956, Sykes And A… in 1960 and a follow-up, simply titled Sykes, in 1972.

In the latter two, he and Jacques developed a popular partnership as a bumbling brother and long-suffering sister living at Sebastopol Terrace.

Another of Sykes’ best-known productions was in a virtually silent slapstick film called The Plank.

The 1967 short saw him and Tommy Cooper play accident-prone workmen and is regarded as a landmark of visual comedy.

Sykes also appeared in the controversial 1969 sitcom Curry and Chips alongside longtime writing partner Spike Milligan, who was blacked up to play an Irish-Pakistani factory worker.

Sykes’ television roles dried up after a sitcom set in a golf club, The Nineteenth Hole, made for ITV in 1989. But his career was far from quiet.

‘Wonderful improviser’

He had appeared in a string supporting roles on the big screen over the years and continued his film work with The Others, alongside Nicole Kidman, and as caretaker Frank Bryce in Harry Potter and the Goblet of Fire.

He also enjoyed renewed acclaim on stage, appearing in plays by the likes of Ray Cooney, Moliere and Alan Bennett.

That came despite struggling with hearing loss for most of his life, as well as gradual eye failure, which left him almost deaf and blind by the 1990s.

Former BBC head of comedy Jon Plowman paid tribute to Sykes as “a warm man, a kind man, a warm family man”.

“We won’t see his like again,” he said. “He was a wonderful improviser.

“His genius was both as a scriptwriter but also someone who could do stuff off the cuff. He was classless and funny and warm.”

Sykes was made an OBE in 1986 before being elevated to a CBE in 2004.

In 1992, he received lifetime achievement honours from the Writers’ Guild and the British Comedy Awards.

Sykes and wife Edith celebrated their 60th wedding anniversary this Valentine’s Day. The couple had one son and three daughters.

Proloquo2Go

July 4, 2012

New technology promises to give thousands of children who cannot speak a voice.

An app called Proloquo2Go allows six-year-old Ruby Dunn to tap on symbols on a tablet computer – and then have a sentence read out in a child’s voice.

The software, which features the voices of two British children, is among a number of innovations now helping children with special needs.

Rory Cellan-Jones reports.

CAB Buckling Under ESA Call Pressure

July 4, 2012

Advice centres are struggling to cope with a surge in requests for help because of rising problems claiming employment and support allowance (ESA), the new sickness and disability benefit, according to Citizens Advice, which responded to 97,000 requests for support on this issue alone in the first three months of 2012.

The charity said its “already overstretched service” had been put under severe pressure by the problems connected with ESA, and the controversial computer-led fitness test, the work capability assessment (WCA), which determines eligibility for the benefit.

Problems connected with ESA were the fastest-growing area of need among people who consulted a Citizens Advice Bureau (CAB) in the first quarter of this year, rising by 71% on the same quarter last year. There was an 82% rise in requests for help in mounting an appeal against a decision not to award the benefit. Around 38% of appeals against a refusal of the benefit are currently being overturned in the claimant’s favour.

The rise is explained in part by the fact that last April, all former incapacity benefit claimants began to be reassessed for the benefit, which was introduced for new claimants in 2008; the increase in demand for help will be linked to claimants’ lack of familiarity with the new process. Overall requests for help with benefit claims rose by 6% in that period, making this the largest part of the charity’s work, making up 34% of all advice given by CAB.

The charity warned that its advisers were already struggling to cope with the huge rise in applications for support, and would find it extremely difficult to handle a further surge in requests for help next year when fundamental changes to the welfare system arrive with the introduction of Universal Credit.

Gillian Guy, CAB chief executive, said: “This is a very worrying trend. ESA is giving rise to a far higher volume of appeals than any other benefit. As well as the huge additional stress and hardship this causes our clients, it also puts severe pressure on our already overstretched service. Our specialist advisers in bureaux are being overwhelmed by the volume of these complex and time-consuming appeals.

“Things are likely to get even worse when sweeping legal aid cuts come into force next spring. These will have a devastating impact on our capacity to provide specialist welfare benefits advice and casework – just as the biggest shake-up in the benefits system since the welfare state came into being begins to get underway.”

Chris Grayling, the employment minister, said: “Given the comparison of the two periods, aA rise in contacts to the CAB is not surprising when you consider that along with all the new ESA claimants, we are reassessing 1.5 million people over three years.

“We are determined to ensure the process is fit for purpose, which is why we are implementing all the recommendations made by our independent reviewer to make it better and fairer.”

‘Oblivious’ estate agents and search sites deepening property crisis say young disabled people

July 4, 2012

A press release from Trailblazers:

A property crisis which is trapping young disabled people at home and preventing them from living independently, relocating for work or even moving in with partners and spouses is being deepened by ‘complete obliviousness’ within the property industry, according to a new report.

Young people told of estate and letting agents with little or no understanding of accessible property, failing to list relevant features such as step-free access on their websites and even attempting to take wheelchair-users to view properties up flights of steps, during a study by the Muscular Dystrophy Campaign Trailblazers. The 400-strong group of disabled 18-30 year-olds, which campaigns on social issues affecting disabled people, also found that many of those who took part had been forced to search through thousands of properties individually as leading property and home share websites fail to offer the means to search for accessible accommodation. One site offers searches as specific as ‘waterfront’ and ‘contemporary’, but wheelchair-users must view properties individually to establish whether they are able to get through the front door.

Two hundred young disabled people gave details of their experiences dealing with estate and lettings agents, search engines, local authorities and private landlords for the report, Locked out, which found that:

·         85 percent of the young disabled people surveyed do not feel confident that access advice that was given by estate agents, local authorities and other housing providers was accurate

·         seven out of ten find it difficult to identify accommodation that is accessible to them because estate agents have poor knowledge of adapted properties in their area

·         94 percent say that more information on websites about access would improve the experiences of disabled people looking for accommodation

·         nine out of ten young disabled people are as keen to get on to the property ladder as their non-disabled peers

·         properties listed by agents on the Accessible Property Register, set up in 2003, remain low – a Trailblazer who used the site to search for rental accommodation in Greater London found just one property listed.

The group is now calling on agents to recognise the disabled market, to advertise accessible features and to work with disability groups to improve employees’ knowledge of disabled home-seekers’ needs.

Wheelchair-user Hannah Lou Blackall (26) tells how she was forced to live in a conference centre for over a year at a cost of £1,000 a month. She was unable to find a wheelchair-accessible home to rent after relocating to Hull to continue her career in social work, despite registering with multiple agents.

“It was very frustrating trying to track down a property near Hull that would actually work for me. I was signed up to every single estate agent, but none of them really seemed to understand what an accessible property was. One agent really wanted to help and contacted me excitedly after finding a bathroom with an accessible shower. The bathroom turned out to be on the second story of a house with no lift. In the end I was stuck living in a conference centre full of business people all week and being forced to make the trip home every weekend. I couldn’t start establishing a life for myself there and eventually was forced to move back to Norfolk.

“The rental market really doesn’t seem to realise that young disabled people now live and work independently; there is a big potential market out there if they take the right approach to catering for disabled customers.”

Over the last financial year*, £180 million of non-ring-fenced funding was allocated to 382** local authorities towards Disabled Facilities Grants (DFGs). Disabled home-owners can apply for a grant, of up to £30,000 towards installing ramps and lifts, adapting bedrooms, bathrooms and kitchens and widening doorways. The Trailblazers are concerned that if agents fail to recognise the value of adapted property and do not advertise to the disabled market, home-owners may be encouraged to remove the adaptations before sale.

Problems for disabled home-seekers who took part in the study were not restricted to privately-owned property. Trailblazers reported waiting up to six years for accessible local authority accommodation to become available. Wheelchair-user Carrie-Ann Lightley (25) from Kendal was told she would have to wait “until someone passes away” for a property to become free. She said:

“I wanted to move in with my partner – now my husband – Darren, and we needed to find a property to buy that would be suitable for both of us. I was living with my parents and was regarded as a low priority. We waited for years. It was only after a family member agreed to give us the chance to buy an empty property at an affordable price that we were able to set up our home. Who knows whether I would be living with my husband now if we hadn’t been so fortunate.”

Local authorities are currently under no obligation to ensure a percentage of social or private accommodation that meets the needs of disabled people is constructed. However, poor allocation of existing accessible stock has caused concern. In some local authorities the percentage of wheelchair standard housing association lets allocated to disabled people is less than 20 percent*.

The Trailblazers are also calling for:

  • local authorities to follow the example of and improve on the work of local authorities that have set up accessible housing registers
  • to commit to a housing strategy in which all new housing will be built to the Lifetime Homes Standard**** and 10 percent will be built to wheelchair standard designs

Bobby Ancil, Project Manager of the Muscular Dystrophy Campaign Trailblazers, said:

“It seems that the UK property industry is truly in the dark ages when it comes to catering for disabled home-seekers. Our investigation exposed estate and lettings agents as well as property websites who appeared completely oblivious to this market.

“The public sector is faring little better. Local authorities are being given hundreds of millions of pounds each year towards grants to adapt existing homes, while they fail to set quotas to ensure demand for accessible properties is eased by new developments.

“It is the 21 century, and just as their non-disabled peers do, young disabled people hunt for suitable rental accommodation to move out of the family home, while studying, when setting up their careers or when moving in with friends or partners. The need to develop financial security and get on the property ladder is no different. We need the private sector to understand accessible homes and how to market them and for the public sector to allocate fairly and increase stock, if the situation is ever to improve.”

Review: The Ballad Of Nihal Armstrong

July 3, 2012

Readers, I reviewed the e-book. And it’s just gone live at Suite 101.

Report Finds Shocking Delays In Dementia Diagnosis

July 3, 2012

Many patients face “shocking” delays for dementia diagnosis and treatment, according to a report by MPs and peers.

The All-Party Parliamentary Group on Dementia says GPs are often seen as barriers to a diagnosis.

Its report says some people have to wait more than a year for an appointment at a memory clinic.

The Department of Health in England says the number of memory services is increasing.

The inquiry was set up to examine big discrepancies in dementia diagnosis rates. Across the UK it is estimated that only 43% of people with the disease have a formal diagnosis.

Scotland has the highest rate with 64.5%. In Northern Ireland it is 61.5% and in England it is 41%. The diagnosis rate is lowest in Wales, with 37.4%.

Poor understanding

The report says there is strong evidence to show the benefit of early diagnosis for people with dementia, their families, and also to the taxpayer.

This is reflected in official government policy across the UK, and was reinforced recently by Prime Minister David Cameron setting out his national dementia challenge for England.

But the inquiry highlights what it calls “barriers” to diagnosis and treatment, after looking at evidence submitted by more than 1,000 carers, GPs and hospital specialists.

These include poor public understanding of dementia. More than a third of carers who responded said the person with the condition had waited more than a year to go to their GP.

The report says many came to regard GPs as barriers to diagnosis rather than gatekeepers.

It also identifies big variations in access to memory services. Some people reported having to wait more than a year for an appointment at a memory clinic, while for others it was just a few weeks.

And it says people often received no information or support following diagnosis.

‘Growing need’

In March this year the prime minister called for a dramatic increase in dementia diagnosis, as part of his strategy to deal with the disease as a “national crisis”.

This included plans to increase public awareness, and to encourage GP referrals to memory clinics, for assessment, diagnosis and support.

The recommendations in the report include more training for GPs and other health workers, improved accreditation and more investment in memory services.

Jo Webber, from the NHS Confederation, said dementia was one of the biggest challenges facing the NHS.

“It is quite clear that every part of the health service is going to have to adapt to the needs of this growing group of patients – from the GP surgery to the hospital ward. We have to be honest and say we are not there yet.”

The care services minister in England, Paul Burstow, agreed on the importance of early diagnosis.

“Some areas are doing fantastic work, but there is still too much regional variation.

“That is why we are driving forward measures to improve the quality of memory services, including work to increase the number of accredited… services and work to help local commissioners map the need in their area.”

Wiskott-Aldrich Syndrome

July 3, 2012

The family of an eight-month-old baby who needs a bone marrow transplant have been given hope after potential matches were found.

Danny Bryan, from Normanby, Teesside, has a rare genetic condition that leaves him unable to fight infection.

His mother Claire, 26, now has to wait another month to find out if he can go ahead and have the life-saving operation.

If a donor is found he will have 10 days of chemotherapy before surgery.

Fresh hope

Following the operation, he will live in a sterile “bubble” for months while his contact with others is limited.

Doctors have told Miss Bryan he has a “particularly severe” case of Wiskott-Aldrich Syndrome.

Miss Bryan said: “All his rashes are clearing up now and in the next four weeks hopefully we’ll have more information.

“We were told last Wednesday of two potential matches. It’s not 100% but it just gives us a little bit of hope. We’re just praying that one of these comes off.”

More interest

The family are busy helping the charity Anthony Nolan UK to promote a donor registration event on 10 July at the Riverside Stadium in Middlesbrough.

Miss Bryan said: “It’s to try and get more people on the register. There has been a lot of interest. Lots of people have contacted us and I was getting a lot of emails.

“People have have started to raise funds for the Bubble Foundation.”

The 10 July event is from 15:00 BST until 20:00 BST.

Can Recording Memories Help Dementia Patients?

July 2, 2012

Discovering the best way to help those with dementia deal with their condition is still in its early stages, but some research suggests that reminiscing about times-gone-by could make a difference.

Recording memories is a popular thing to do.

From the fans at the front of a concert filming on their phones to the formal photos of the late 19th Century, the memory bank of the world seems to rely on physical recordings of events, of people and of places.

But could it serve an even more useful purpose for those with dementia? A sort of “reminiscence therapy”.

The Alzheimer’s Society estimates that in less than 10 years time, a million people will be living with dementia. This, they say, will reach an estimated 1.7 million people in fewer than 40 years.

They also say that one in three people over 65 will die with dementia.

Research organisation Iriss claim that “reminiscence therapy and life story work can improve the mood, cognitive ability and well-being of those with mild to moderate dementia”.

And the Alzheimer’s Society believe that the therapy is a good way to help empower people with dementia, by accessing long-term memories.

‘Laughing and joking’

One way of trying to access someone’s long-term memory is to make video or audio recordings and play them back before symptoms become severe.

Eleanor’s husband Barry made a tape before the onset of his dementia.

“One day I remembered this tape where Barry talked about his youth and he had a really happy childhood. He was really enthusiastic about it so he was laughing and joking,” says Eleanor, who does not want her surname to be made public.

She thinks that playing this tape back to Barry has really helped him – and helped her too.

“By this time, he was really agitated, wouldn’t sit down, wouldn’t listen to the radio and I put this tape on one day and he was astonishing… he was, like, hypnotised.

“He just sat there. Every so often, he’d smile. He didn’t know it was him but he really knew it was something to do with him and he was just smiling at the jokes and the funny bits. I’m crying now thinking about it.

“The thing is, I don’t really know how good it was for him but it was amazing for me…. It was just lovely to watch something coming back.”

‘Unexpected clarity’

The problem is that quantifying results like this is often difficult.

The Cochrane review entitled ‘Reminscence therapy for dementia‘ (2009) reported that more research was needed before any conclusions could be drawn. It said no harmful effects were identified, but that studies so far have significant limitations.

But stories of how recordings are helping certain people are already reaching charities.

“While it is too early for this specific approach to have a scientific evidence base, the anecdotal feedback suggests it could have benefits for people with dementia and their carers,” says Andrew Chidgey, Alzheimer’s Society’s director of external affairs.

“Other methods of accessing long-term memories – or reminiscence therapy – have also been found to be a powerful way of stimulating communication and enabling people to recall moments from their past with unexpected clarity.”

Dementia charity Opaal is working on a report and on advice to help those working with dementia patients who want to record their views.

“Memory recording has been done that’s non-technological, usually on paper,” says Jeff Lee, an intern researcher at Opaal who is authoring the report. “But if we want something to help someone’s memory, look no further than the computer. It’s there but it doesn’t seem to be very mainstream. I find that puzzling.”

The difficulty can come, Mr Lee believes, in quantifying results and agreeing that one particular method is suitable for all patients with dementia.

“One of the dangers of this is the prevalence of ‘ray of hope’ news stories,” he says.

“They say ‘if you eat more of this, it will help dementia’ and it does lead you down this quantified route of what is good and what is bad. In a way, that ignores the basic realities that people caring for those with dementia face every day. It’s not about numbers, it’s about how someone responds.”

“If people were doing it from the ground up and trying things out, I think it could prompt organisations to take it more seriously, but of course then there are safeguarding issues so it’s very difficult,” says Lee.

“But why shouldn’t people with dementia get the benefits of the digital revolution like anybody else?”

The Ballad Of Nihal Armstrong Is Now Available On Kindle

July 2, 2012

 

I’ve just found out that the script of The Ballad Of Nihal Armstrong is now available on Kindle.

This is an intensely dramatic and moving true story of a mother’s tireless battles and inspiring triumphs in her struggle for her disabled son’s rights. Starting with a difficult conception and a terrifying delivery with unsympathetic midwives on hand, the mother describes how ‘her backbone lost its steel’ when the doctor predicts that this gurgling, farting, smiling baby would not grow up to walk, talk, read or write. That is only the beginning… when Nihal’s mother discovers he has a sensitive and intelligent personality trapped inside his body, she does everything in her power to set it free but mostly she finds that people are unable to accept that flowers can bloom in a desert. Even in schools where the teachers should have known better!This is a story of loss, grief, joy, Nihal’s wicked sense of humour and the indomitable human spirit.

 

Nihal grew up to be a very close and special friend of mine, but that is not the only reason I am asking anyone with a Kindle to read this book. It is extremely well written and will move you to tears- but also, in places, have you in fits of laughter.

 

 

 

 

Update 3/7: If you, like me, don’t have a Kindle, Amazon has a free ‘Kindle for PC’ app that can be downloaded through which you can read Kindle books on your PC.

 

David Sykes

July 2, 2012

A man from West Yorkshire who flew a microlight from the UK to Australia has been awarded a trophy for “the spirit of adventure”.

The Royal Automobile Club awarded David Sykes, from Dewsbury, the Segrave Trophy for the three-month trip.

Mr Sykes, a paraplegic, was awarded it for “outstanding demonstration of transportation by land, air or water”.

Previous winners include racing drivers Lewis Hamilton and Stirling Moss, and 1930s aviator Amy Johnson.

Mr Sykes, 43, is thought to be the first paraplegic to fly from England to Australia in a microlight.

In April 2011 he set off from York and used the journey of 12,000 miles (19,300kms) to Sydney to raise money for the Yorkshire Air Ambulance.

He said: “I have always had a dream to fly round the world.”

Motorbike accident

The trip started after a bet with a friend in the pub and during it Mr Sykes faced a sandstorm in Saudi Arabia and thunderstorms in Thailand and Burma.

“At one point I seriously thought I was going to die.”

The microlight has a 1.5 litre engine beneath a hang glider wing and is equipped with special hand controls.

In November 1993, a motorbike accident left Mr Sykes with a broken back, clavicle and thigh bone, together with broken ribs and punctured lungs.

He was released from hospital in May 1994, took up microlighting in 2000 and gained his pilot’s licence in 2001.

Sir Henry Segrave was the first person to simultaneously hold the land and water speed records .

The trophy was established in 1930 to commemorate his life.

Jack Widdowson

July 2, 2012

Last year 19-year-old ballet dancer Jack Widdowson was lying paralysed in a hospital bed after being assaulted during a night out.

Doctors thought he might never walk again, but just eight months later, he is not only walking but dancing again too.

This week Widdowson will return to the stage in his first public appearance since the attack.

Graham Satchell reports.

Sam Frears- A Life Less Ordinary

July 2, 2012

When Sam Frears was born, he was expected to reach five. The best night of his life? His 40th birthday.

New Brain Scanner To Help Paralysed People Spell Words

June 30, 2012

This sounds great.

A new brain scanner has been developed to help people who are completely paralysed speak by enabling them to spell words using their thoughts.

It uses functional magnetic resonance imaging (fMRI) to help patients choose between 27 characters – the alphabet and a blank space.

Each character produces a different pattern of blood flow in the brain, and the device interprets these patterns.

The British Neurological Association called the research “exciting”.

The study appears in Current Biology journal of Cell Press.

fMRI is normally used to track brain activity by measuring blood flow.

Earlier research

The new technology is based on earlier applications of the technique, which used free-letter spelling to allow people to answer the equivalent of multiple-choice questions with just a few possible answers.

British neuroscientist Adrian Owen, for instance, used fMRI to help a man believed to have been in a vegetative state for five years to answer “yes” and “no” questions by interpreting his brain activity.

But the new scanner uses the entire English alphabet and the blank space.

“This novel spelling device constitutes an alterative approach to motor-independent communication,” Bettina Sorger of Maastricht University in The Netherlands, one of the researchers working on the current study, told the BBC.

“The work of Adrian Owen and colleagues led me to wonder whether it might even become possible to use fMRI, mental tasks, and appropriate experimental designs to freely encode thoughts, letter-by-letter, and therewith enable back-and-forth communication in the absence of motor behavior.”

The team writes in the paper that because the noninvasive device requires “only little effort and pretraining, it is immediately operational and possesses high potential for clinical applications, both in terms of diagnostics and establishing short-term communication with nonresponsive and severely motor-impaired patients”.

Exciting results

Elaine Snell of the British Neuroscience Association told the BBC that the technology could become “a lifeline” for patients in a persistent vegetative state, or suffering from other neurological disorders.

“This means of communication will make a huge difference to the quality of their life and to that of their families.

“This kind of technology can only get better, it’s very exciting.”

Dr Guy Williams from the Wolfson Brain Imaging Centre in Cambridge agreed.

“The technique may need some adaptation to be widely applicable to patients who might have impaired awareness or ability to concentrate on the required task, but it is nonetheless an important demonstration of what these scans can in principle tell us about the functioning of an individual’s brain,” he told the BBC.

Blind People And Bus Drivers

June 28, 2012

The results of a new report on how to cope with the cuts without eyesight- and how some sensitivity from bus drivers would go a long way to help.

Gerry Anderson, Thunderbirds Creator, Has Alzheimer’s

June 28, 2012

The creator of Thunderbirds, Gerry Anderson, has revealed he has Alzheimer’s Disease.

Mr Anderson was diagnosed 18 months ago but has spoken about it publicly for the first time for an Alzheimer’s Society walk launch on Thursday.

The 83-year-old, who lives in Henley-on-Thames, said of living with the condition: “I’ve lost my freedom.”

Thunderbirds was filmed on Slough Trading Estate in Berkshire and was first broadcast in 1965.

‘Kettle in sink’

Speaking on BBC Berkshire he said: “I don’t think I realised at all. It was my wife Mary who began to notice that I would do something quite daft like putting the kettle in the sink and waiting for it to boil.

“Finally I was persuaded to go and see the doctor and eventually I was confronted with the traditional test – a piece of paper with drawings on it, taking a pencil and copying them.

“I thought ‘Why are they doing this? A child could do this’.

“But when I started to copy the drawings, that wasn’t the case.

“I started to get in a muddle. That’s when I began to realise that there was something wrong.”

Mr Anderson, who also created the marionette puppet series Joe 90 and Captain Scarlet and the Mysterons, said being told he was no longer able to drive “was the bitterest blow of all”.

“That virtually took away my freedom. It meant that I couldn’t go to Pinewood studios where I worked, and this depressed me enormously because my film work was my life.

“Suddenly my life was cut off. Since I’ve had Alzheimer’s I’ve realised how debilitating it is. It can affect your life in so many ways that you don’t think about.”

Mr Anderson was diagnosed with Alzheimer’s in early 2010 but his son Jamie said the family noticed recurring symptoms “five or six years ago”.

“Little things like losing his way on car journeys he’s done for 20 years or more, using very strange ingredients when making soups, struggling to dial numbers,” he said.

“We look with hindsight now and we see symptoms that were recurring five or six years ago and if we’d bitten the bullet and dealt with it then perhaps it would have been different.”

Mr Anderson will be taking part in the Windsor Memory Walk with Jamie on 13 October in support of the Alzheimer’s Society, which is encouraging people to sign up for the walks that will take place around England.

Alzheimer’s Society chief executive Jeremy Hughes said: “We’re so grateful to Gerry for supporting Memory Walk.

“By speaking out about his dementia he’s spreading the message much further that it can happen to anyone.”

Prison Reform Trust Wants Help For Defendants With Learning Difficulties

June 28, 2012

This is a very difficult area. I don’t think it’s possible to compare defendants and witnesses as witnesses have not usually broken any laws.

I had to think twice about my views on what the PRT suggests, particularly in the case of serious crimes like murder- though I then realised something important. If a wheelchair user was ever to be a defendant in a court, I would be unhappy if the courtroom was not wheelchair accessible. So of course defendants with learning difficulties should be able to understand the process of a courtroom. Efforts should be made to make this possible.

Any thoughts, readers?

Greater support needs to be given to vulnerable defendants in order for them to get a fair trial, particularly those with learning difficulties who may have problems understanding the process, a report by the Prison Reform Trust (PRT) has warned.

About 1 in 5 prisoners has a learning difficulty and up to one-third of all prisoners has a low IQ, research from the charity suggests. Currently, however, there is no legal requirement to provide support for vulnerable defendants, who must rely on the discretion of individual courts.

As a result, around one-fifth of those previously surveyed by the PRT said they didn’t understand what was going on in court or what was happening to them. The report cites several defendants who have experienced such difficulties. One quoted said: “It was scary because I just see this man and two women sitting on a great big bench and I was in a glass box and there were all these others looking. A man then came over and said he was my solicitor but he was different from the one the night before. I thought to myself, ‘what is going on?'”

In addition to problems in understanding, defendants with learning difficulties may also be acquiescent and suggestible, and, when under pressure, may try to appease other people, giving answers they think the lawyer wants to hear and consequently jeopardising their own trial, the report suggests. One defendant quoted in the report said: “I didn’t understand really; I pleaded guilt straight away,” while another said: “I couldn’t understand but I said ‘yes, whatever’ to anything.”

“People with a learning disability in Britain today are not always granted a fair trial,” said Juliet Lyon, director of the PRT. “Far more must be done to prevent the nightmare of entering trial proceedings – which could result in imprisonment – without adequate support and without fully understanding what is going on, or being able to speak up for yourself.”

The report recommends that vulnerable defendants be legally entitled to the same support vulnerable witnesses currently receive. It stresses the need for statutory provision of “special measures” to assist defendants, including intermediaries. Currently, unlike with vulnerable witnesses, if intermediaries are appointed to support defendants, they are neither registered nor regulated. The report cites a 2011 case in which a defendant with ADHD was refused a registered intermediary; a decision later quashed due to the “real” risk he would not receive a fair trial.

A Ministry of Justice spokesperson said that it is vital that people with learning difficulties or mental health issues are given a fair trial.
 
“The court is under a duty to check throughout a case that all parties understand what is going on, which is why court and prison staff are trained to indentify learning difficulties and mental health issues. Those who are not able to understand court proceedings or present their own case are usually entitled to a legally aided defence. The judiciary may also appoint an intermediary to help defendants understand questions during a trial, and to help communicate their answers.
 
“Those who are deemed medically unfit to plea cannot be made to stand trial, until they are fit to do so.”

SMA Study Boost- FAO @Estellastar1 #smashsma

June 28, 2012

Information has been discovered that could help scientists explain the most common genetic cause of death in children.

Spinal muscular atrophy (SMA), also known as floppy baby syndrome, targets the body’s nerve cells (motor neurones), causing babies to have little or no control over their movements.

Cell biology experts at the University of St Andrews have looked at the way SMA stops genes from working properly.

The research team found differences in the movement of key parts of a molecular “machine” called the spliceosome which is vital to the way genes work. It helps to decode the DNA molecules that carry genetic instructions and removes sections which are not needed.

This decoding process goes wrong in conditions such as SMA.

Now the researchers hope the discovery of these differences in molecular movements may help explain what goes wrong in cells to cause the condition.

SMA is the leading genetic cause of death in children and affects one in 6,000 births, the research team says.

Dr Judith Sleeman, who led the research being published in the Journal of Cell Science, said: “The genetic defect that causes SMA has been known for nearly 20 years, but how this defect leads to the symptoms is still not understood.

“Problems with the splicing of messenger RNA, an essential step in decoding genes, have been seen in SMA. Our work explains how these problems might be caused.

“We hope that this will provide an important clue to help unravel how cells are damaged in SMA and, in time, contribute to the development of treatments for this devastating condition.”

Paraorchestra

June 28, 2012

Something for those who like classical music a lot more than I do.

BMA Conference: Doctors Oppose Assisted Dying

June 27, 2012

Doctors have reiterated their opposition to assisted dying, at their annual conference.

Delegates at the British Medical Association’s meeting in Bournemouth debated the issue after a motion calling for the organisation to take a neutral stance was put forward.

But medics voted to reject the proposal.

Doctors speaking at the event warned a change in position would send the wrong message.

The motion to move from opposing a change in the law to taking a neutral stance was proposed by Raymond Tallis, a retired geriatrician and chairman of Healthcare Professionals for Assisted Dying.

He is in favour of assisted dying for patients who are terminally ill and mentally competent.

He told the conference: “Assisted dying is a matter for society as a whole and not for the medical profession.”

He added the current law, which prohibits assisted dying, was forcing people into “starving themselves to death, botched suicides and trips abroad”.

But other doctors at the conference spoke out against the idea.

Prof Baroness Ilora Finlay, a cross-bench peer and professor of palliative care, said it was essential that doctors “never walk away from patients”.

She said: “Neutrality does not bring balance to the debate. It says to Parliament we see it as an acceptable option.”

And Rebecca Briscoe, a junior doctor, said changing the BMA’s stance would “breach the trust” of patients as assisted dying was a “cheap, easy and incredibly dangerous” option.

Dr Hamish Meldrum, chairman of the BMA, also said he would be opposed to moving to a neutral position.

He called it the “worse of all options” as it would have the effect of excluding the organisation from the debate.

Autistic Adults Need Better Care Says Report

June 27, 2012

The NHS should better recognise the signs of autism in adults to improve their quality of life and employment opportunities, according to the health watchdog.

Guidance published on Wednesday says doctors should consider a diagnostic assessment for autism if they spot signs of the condition, in which a person may find it hard to deal with social situations, or has communication difficulties.

National Institute for Health and Clinical Excellence’s (NICE) first clinical guideline on how to recognise and manage autism in adults advises healthcare professionals to consider such a diagnosis when an adult has one or more of the following – persistent difficulties in social interaction or social communication, rigid or repetitive behaviour, and one or more of the following – problems in obtaining or sustaining employment or education, difficulties in initiating or sustaining social relationships, previous or current contact with mental health or learning disability services, and a history of a neurodevelopmental condition (including learning disabilities and attention deficit hyperactivity disorder) or ‘mental disorder’.

There are estimated to be more than 500,000 people in the UK with an autism spectrum condition (ASC) including Asperger syndrome. The majority are diagnosed in childhood and adolescence.

While there are many support services and care options available, if left undiagnosed or undetected, autism can cause feelings of isolation, confusion and social and economic exclusion.

Professor Mark Baker, director of the centre for clinical practice at NICE, said: “This is the first clinical guideline by NICE to focus on autism in adults. It aims to help improve the care of adults with autism and contribute to achieving the aims of the first ever autism strategy for adults in England launched in 2010.”

NICE also advises that every adult with autism who does not have a learning disability or who has a mild one should be offered an individualised support programme if they are having difficulty obtaining or maintaining employment.

Richard Mills, director of research at the National Autistic Society and guideline developer said: “While there are estimated to be around 332,600 people of working age in the UK with some form of autism, only 6% of them have a full-time paid job. It is encouraging that the NICE guideline highlights employment advice as a particular need as so many adults with autism are able and keen to work and can bring many skills and qualities to potential employers.”

Care services minister Paul Burstow said: “The Government is committed to improving the quality of care for people with autism, including ensuring they receive a timely diagnosis.

“This guideline will be a valuable contribution to achieving more consistent and effective care and will support the implementation of the cross-Government autism strategy.”

Unpaid Carers Cost Economy Billions Says Charity

June 27, 2012

But how much do they save it in care costs?

Carers who give up work to look after others cost England’s economy about £5.3bn a year, the charity Age UK says.

It says an unfit care system means people often have to give up work to help the elderly or adult disabled.

The figure was calculated on the lost earnings and forgone taxes of more than 300,000 unpaid carers.

The government says its long-awaited white paper on social care is “imminent” and will include funding changes to “transform care”.

Michelle Mitchell, charity director general of Age UK said: “For many people, caring for a loved one is second nature and they wouldn’t have it any other way.

“But carers should never be forced to sacrifice their own financial security and wellbeing due to the lack of service provision and support from public services.

“Care cannot wait any longer – this is the government’s last chance to get it right and set their political legacy for generations to come.”

A Department of Health spokesman said: “We agree that helping people to stay in work alongside caring not only helps carers’ careers and family finances but is crucial for our workforce and economy.

“The government has committed to working together with the business community to help carers manage work and care.

“Social care reform is one of the biggest public policy challenges society faces and, in the current public spending environment, we need to make sure that we get this reform right to deliver lasting change. “

Reform needed

The Age UK analysis built on work from the London School of Economics in April, adding in loss of wages to previously calculated loss from tax revenues and claimed carers’ allowance.

Loss of earnings was estimated using three surveys: the carers survey – to examine the proportion of male to female, part-time to full-time carers, the labour-force survey – to calculate average earnings, and the population estimate.

On Tuesday the Local Government Association warned the rising cost of adult social care could “soak up” almost all of council spending by 2020.

Currently, £14.6bn is spent on adult social care services in England.

Last year the economist Andrew Dilnot was asked by ministers to look at how funding could be changed. The Dilnot Commission recommended the means-testing threshold for those needing residential care be increased to £100,000. It also called for a partnership whereby individuals pay the first chunk of their care. It recommended a cap of between £25,000 and £50,000.

Wales and Northern Ireland both have means-tested systems similar to that in England.

Scotland provides free personal care, but in recent years has started tightening the eligibility criteria for the same reasons councils in England have.

Medical Coding and Medicare Services

June 27, 2012

This is a guest post by Susan Gorgalini. Thanks to Susan.

While the United States has not yet come up with a specific date for requiring all health care operations to switch to ICD-10, the latest medical codes revision, it is coming. The previous deadline was the last quarter of 2013, and the next deadline will probably not be much further in the future. Amidst the flurry of activity to switch processes, systems and software over to prepare for the changes in the medical code system, some are concerned about the effect the new codes will have on Medicare.

Medical codes are used primarily for billing and communication purposes, making them an integral part of applying for Medicare coverage for specific treatments. In fact, The Center for Medicare and Medicaid Services is the organization making the primary decisions for the ICD-10 switch. This means that professional data billers are likely to be in high demand both directly before and after the switch has been made. The additional codes and revise process will mean many will require additional training and classes before they are ready to operate the new system. This training is just another obstacle in the implementation of this new program.

The Medicare process itself is deceptively simple. A patient enters a hospital with a specific condition. The hospital assigns this condition a code based on the appropriate classification system. This code defines what kind of disease it is, whether it qualifies as a disability under Medicare rules and how much fees will cost. Insurance companies use these codes to determine reimbursements. Medicare also incorporates them in its paperwork when authorizing claims payments. The result is a code that can be used across multiple organizations in order to speed up the claims process and ensure accuracy throughout the billing stage. However, as this system is radically different from ICD-9, the supposed simplicity evaporates, leaving behind the need for additional education and mounting costs.

A brief clarification for those wondering if their Medicare benefits will be altered: ICD-10-PCD  (Procedure Coding System) is only used in inpatient hospital claims. Other types of codes are used for claims originating in other areas of the health industry. Sometimes Medicare depends on codes such as HCPCS or CPT-4, which are not undergoing changes. Medicare also uses a variety of codes for drugs and unique Medicare-only codes.

When ICD-10 finally enters the American system, it will grow the complexity of the Medicare system greatly. There are 68,000 codes to be used in 10, as opposed to only 13,000 codes in the 9th version. This means Medicard processes will need to have the data storage space and system efficiency necessary to deal with exponentially more codes or slowdowns in payments will occur, followed immediately by slowdowns in cashflows and for the health industry as a whole. Some claims may suffer, too. The new code format, for example, classifies myalgic encephalomyelitis as a nervous system disease, while classifying Chronic Fatigue Syndrome in a vague “findings not elsewhere classified” code. The two conditions are the same, however, so a patient could find their benefits denied or changed because of the way a hospital decides to interpret the disease.

Of course, the goal of ICD-10 is to increase the accuracy of reporting and clear up any confusing code issues, which should have the long-term effect of making claims easier to process and clarifying what codes health care plans should use (under the current system, many use “unspecific condition” codes for certain claim types). The problems come during the difficult transition phase, which is expected to cost as much as $8 billion.

The weight of these additional costs threaten to break an overstretched and overwhelmed system however, as the world catapults into the digital age, it is necessary to drag the medical industry along. While the initial costs will be steep and the pain points in the process frequent, failure to do so may render a vital system obsolete and useless.

Dementia Patients In Care Homes Should Be Allowed Consensual Sex, Says Report

June 27, 2012

I agree with this.

Care home patients suffering from dementia should be allowed to participate in consensual sex, experts said.

Safety fears and ageism towards elderly people in care facilities are denying them a “basic human right”, the report suggests.

The article, published in the Journal of Medical Ethics, argues that physical intimacy and the expression of sexuality is a “normal and healthy” part of ageing.

The authors say the lack of attention paid to resident’s sexual needs is “concerning”.

“Since it has been well established that sexuality and intimacy continue to be important in later life and are central to an individual’s health and wellbeing, the lack of attention paid by aged care facilities to residents’ sexual needs is concerning,” they write.

Many care facilities struggle to deal with the “complex moral and ethical issues” when residents express their sexuality, the report states.

“Particularly when a resident has dementia, staff apprehensions about the abrogation of their duty of care and concerns about unlawful activity, anxiety about potential risks to the resident, and fear of negative repercussions from a resident’s family make many facility managers wary of physically intimate activity among residents,” the authors say.

They say that older people, including those suffering from dementia, should have the right to chose whether they participate in consensual sex.

The report suggests that a person may perform badly on a test to assess their mental state, but they are often still able to express a preference for a friend or lover.

While it is important not to expose vulnerable patients to harm, this should not prevent patients with dementia from making their own decisions about sex, they say.

They add: “Seeking to ‘protect’ individuals with dementia by not allowing them to express their sexual needs, thereby stifling their autonomy and personhood, is a far greater failure of duty of care.

“It is also, we would argue, a violation of the fundamental right of a person with dementia to be recognised as a person before the law.”

The authors from the Australian Centre for Evidence Based Aged Care suggest that residential care homes should consider implementing formal policies or appropriately trained staff to deal with the issue – which will become more prevalent with an ageing population.

Imagine: Theatre Of War

June 26, 2012

I’ll be watching this tonight on BBC 1:

From rehearsal room to triumphant performance, imagine… follows the extraordinary theatrical production of The Two Worlds of Charlie F. Professional front line soldiers, all of whom have sustained injury ranging from amputation to post traumatic stress, join forces with a professional theatre company to help write, rehearse and perform a play based on their experiences of war in the killing fields of Afghanistan. What happened when they swapped the theatre of war for the London stage?

Paralympic Founder’s Statue Unveiled At Stoke Mandeville

June 26, 2012

A lasting tribute to the founder of the modern Paralympic Games has been unveiled in Buckinghamshire.

A life-sized cast-bronze statue of Professor Sir Ludwig “Poppa” Guttmann will stand at Stoke Mandeville Stadium during the 2012 Games.

It will then be moved to a permanent home at the National Spinal Injuries Centre in Stoke Mandeville.

Professor Guttmann held the first Paralympic sports event there in 1948 on the opening day of the London Games.

Ludwig Guttmann was the founder of spinal cord injury treatment at Stoke Mandeville Hospital and opened the National Spinal Injuries Centre there in 1944.

He introduced sport into his rehabilitation programme for his patients and the Paralympic Games originated as a result of an archery competition he organised for his patients on the grass outside the centre.

He developed Stoke Mandeville Stadium, the National Centre for Disability Sport, alongside the hospital.

‘Lasting memorial’

The statue was commissioned by The Poppa Guttmann Trust and The Council for Assisting Refugee Academics (CARA) and created by sculptor Mark Jackson as a “lasting memorial” to Guttmann’s “contribution to the initiation of Paralympic sport”.

Chairman of the trust, Mike Mackenzie, said: “It is because of Professor Guttmann’s life-long dedication to the research and treatment of those with life-limiting injuries and disabilities that the Paralympic Games were founded, and why so many non-able bodied individuals are now able to enjoy such active and fulfilling sporting experiences.

“At long last the National Spinal Injuries Centre will have something to say who started it, how it was founded and when it was founded.”

The memorial was unveiled by Professor Guttmann’s daughter, Eva Loeffler OBE, and his son Dr Dennis Guttmann.

At the same ceremony, a bronze bust, also created by Mr Jackson was presented to Sir Philip Craven MBE, president of the International Paralympic Committee (IPC).

The bust will be loaned by the IPC to all future host nations of the Paralympic Games as a symbol of remembrance of Professor Guttmann’s achievements.

EEG Can Detect Autism In Young Children Finds Study

June 26, 2012

A simple brain trace can identify autism in children as young as two years old, scientists believe.

A US team at Boston Children’s Hospital say EEG traces, which record electrical brain activity using scalp electrodes, could offer a diagnostic test for this complex condition.

EEG clearly distinguished children with autism from other peers in a trial involving nearly 1,000 children.

Experts say more work is needed to confirm the BMC Medicine study results.

Early detection

There are more than 500,000 people with autism in the UK.

Autism is a spectrum disorder, which means that it is not a single condition and will affect individuals in different ways.

Commonly, people with autism have trouble with social interaction and can appear locked in their own worlds.

It can be a difficult condition to diagnose and can go undetected for years.

The latest study found 33 specific EEG patterns that appeared to be linked to autism.

These patterns consistently spotted autism in children across a range of age groups, spanning from two to 12 years old.

Hallmark brain activity

The researchers repeated their analysis 10 times, splitting up their study group (children with a medical diagnosis of autism and children with no signs of autism) in different ways.

Around 90% of the time, the EEG patterns could correctly detect the children diagnosed with autism.

The team now plan to repeat their study in children with Asperger’s syndrome – one particular subset of autism. Typically, people with Asperger’s have higher-than-average intelligence and struggle less than people with other types of autism with their speech.

Dr Frank Duffy who is leading the investigation said the work could help determine if Asperger’s should be thought of as an entirely separate condition.

And it could point the way to determining if younger siblings of children with autism are likely to develop the same condition themselves.

“It is a great cause of anxiety when an older sibling develops autism.

“EEG might offer a way to check for the same condition in younger siblings in advance of them having symptoms.”

EEG could also be used to track what effect different autism treatments are having on the condition, he said.

Caroline Hattersley of The National Autistic Society said: “We welcome any research that may help us to understand autism better and improve diagnosis times for those with the condition.

“In a recent survey we commissioned, 50% of people with autism and their families said it was difficult to get a diagnosis and 55% said the process took too long.

“While further testing of EEG scans is still required, any tools that help identify autism at a younger age could potentially improve a person’s quality of life by allowing the right support to be put in place earlier.”

Care Home Worker Raped Woman With Dementia

June 26, 2012

A care home worker has admitted raping a 65-year-old dementia patient and sexually abusing two women, aged 84 and 74, who had Alzheimer’s.

Stephen Murray committed the offences at a care home in South Lanarkshire between December 2010 and April 2012, the High Court in Glasgow heard.

Judge Lord Turnbull placed the 44-year-old, from Larkhall, on the sex offenders register.

He deferred sentence on Murray, a first offender, until next month.

The court heard all three of his victims required round-the-clock care at the home in Lanarkshire, which has not been named for legal reasons.

It heard that Murray was caught with his trousers at his ankles in the room of the 65-year-old woman.

His victim was naked from the waist down.

Advocate depute Alison Di Rollo, prosecuting, said that Murray was caught by a nightshift colleague.

He was interviewed at Hamilton police station and admitted raping the woman.

While being questioned Murray admitted sexually abusing two other dementia patients.

In court, Murray pleaded guilty to raping the woman at the care home in April.

Murray also admitted sexually abusing two other residents.

The court heard that Murray had worked as a carer all his adult life since leaving school and had been at that care home for three years.

The prosecutor said: “He appeared to enjoy his work as a carer and was described as a ‘happy-go-lucky guy’ who was never depressed.”

Ms Di Rollo added: “In view of the complainers severe dementia and communication difficulties, it has been impossible to assess the direct impact, if any, that the accused’s offending has had on them.”

She added: “The complainers’ immediate families are shocked, disgusted and devastated by the offences.”

Det Insp David Tassie, of Strathclyde Police, said: “We are grateful for the co-operation of the families in what was a very harrowing time for them and hope that this admission of guilt will assist them in coming to terms with the effects of these despicable crimes.”

He added: “I would like to reassure the public that we are satisfied that we have captured and acted on all the available evidence and would like to also reassure that Strathclyde Police remain committed to keeping the public safe, no matter where they are in our community.”

Why More Blind People Are Turning To Martial Arts

June 25, 2012

Damon Rose explains all here.

Happy Deafblind Awareness Week 2012!

June 25, 2012

I’ve just found out that this week is Deafblind Awareness Week 2012. Please celebrate this DisAbility in any way possible this week.

Almost Half Of LD Care Homes Fail To Meet Standards Finds CQC

June 25, 2012

Almost half of residential care homes for people with learning disabilities failed to meet care and welfare standards, the health and social care watchdog has found.

The Care Quality Commission said 48% of the 150 locations it inspected were non-compliant in terms of whether patients “experienced safe and appropriate care, treatment and support and whether they [were] protected from abuse”.

The unannounced inspections were launched after BBC’s Panorama revealed that people with learning difficulties were being abused at Winterbourne View, a private assessment and treatment centre in Bristol, last year. The hospital, which could handle 24 patients, charged the state about £3,500 a week.

The CQC found that NHS locations were twice as likely to be compliant as private hospitals, with 33% of independent providers meeting the standards compared with 68% of those run by the state.

The watchdog also raised concerns over the lengths of stays in such facilities, which are meant to help people live independent lives rather than be “warehoused” for years.

Bernadette Hanney, the CQC’s project lead, said that in one case an adult had been kept in a location for 17 years. “That’s unacceptable and we found in two-thirds of cases people had been there for three or more years.”

The inspectors reported concerns over the use of restraint in a quarter of all homes. There were “many examples where restraint was not being effectively monitored”.

At 27 locations – almost one in five of those inspected – the safeguarding concerns were such that the inspectors informed the local authority. In one instance, the report notes, an adult with learning difficulties was bullied for six months by other patients, with no action taken.

The report considered local authority-run centres, privately owned ones and those run by the NHS. It differentiated between assessment and treatment centres and secure units meant for longer stays.

An analysis of the inspections of assessment and treatment centres – of the kind operated by the private company Castlebeck at Winterbourne View – revealed a stark divide between state-owned and commercial hospitals.

The national specialist public health observatory for England said assessment and treatment units operated by NHS trusts were more than three times more likely to be compliant with both of the inspected outcomes than units operated by independent healthcare providers.

Mathematician’s Novel Idea For Parkinson’s Diagnosis

June 25, 2012

Parkinson’s is a devastating disease for those living with the condition and currently there is no cure.

Diagnosis can also be slow as there are no blood tests to detect it.

But now mathematician Max Little has come up with a non-invasive, cheap test which he hopes will offer a quick new way to identify the disease.

He will be kicking off the TEDGlobal conference in Edinburgh calling for volunteers to contribute to a huge voice database.

Mr Little has discovered that Parkinson’s symptoms can be detected by computer algorithms that analyse voice recordings.

In a blind test of voices, the system was able to spot those with Parkinson’s with an accuracy of 86%.

Mr Little was recently made a TED Fellow.

The non-profit organisation behind the TED (Technology, Entertainment and Design) conference creates 40 such fellowships each year. The programme aims to target innovators under the age of 40 and offers them free entry to conferences and other events.

Intel founder

Mr Little became interested in understanding voice from a mathematical perspective while he was studying for a PhD at Oxford University in 2003.

“I was looking for a practical application and I found it in analysing voice disorders, for example when someone’s voice has broken down from over-use or after surgery on vocal chords,” he told the BBC.

“I didn’t occur to me at the time that people with Parkinson’s and other movement disorders could also be detected by the system.”

But a chance meeting with someone from Intel changed that.

Andy Grove, one of Intel’s founders and ex-chief executive, was diagnosed with Parkinson’s in 2000 and has since pledged millions of his personal fortune to fund research into the disease.

This includes funds for the chipmaker to develop its own projects to monitor the symptoms.

“They were using devices that detect breakdown in dexterity and accelerometers but they had also recorded the voices of around 50 patients with Parkinson’s,” explained Mr Little.

The recordings were detailed as the team had recorded the patients once a week over a six-month period.

“They had an enormous amount of data but they didn’t know what to do with it. So we wondered whether my technique would work,” said Mr Little.

“They set me a blind test to see if I can tell them which ones had Parkinson’s. I had 86% accuracy using the techniques I’d developed.”

Voice tremors

The system “learns” to detect differences in voice patterns.

“This is machine learning. We are collecting a large amount of data when we know if someone has the disease or not and we train the database to learn how to separate out the true symptoms of the disease from other factors.”

Voice patterns can change for a number of reasons, including throat surgery, heavy smoking and even just having a common cold.

But Mr Little believes the system will be smart enough to tell the difference.

“It is not as simple as listening for a tremor in the voice. That tremor has to be in context of other measures and the system has to take in other factors such as if someone has a cold.”

Now he is looking for volunteers to contribute to a vast voice bank to help the database to learn even more.

He is aiming to record up to 10,000 voices and has set up local numbers in 10 countries around the world. In the UK the number is 01865 521168.

Anyone can call and they need to state whether or not they have been diagnosed with the disease.

There is also a website where people can find out more about the project.

“The more people that call in, the better,” he said.

“If we get 10,000 recordings we’d be very happy but even a tenth of that would be great,”

Clinical trials

He hopes that the technology will be available to doctors within the next two years.

“We’re not intending this to be a replacement for clinical experts, rather, it can very cheaply help identify people who might be at high risk of having the disease and for those with the disease, it can augment treatment decisions by providing data about how symptoms are changing in-between check-ups with the neurologist,” he said.

There could also be a role for the technology in clinical trials.

“The technology makes it easy for people to report their progress whilst on a new drug, for example,” he added.

“If you can catch the disease early it will make a huge difference to care costs. It could become a key technology in reducing the burden of care on the NHS.”

Talking Newspapers

June 25, 2012

How do you stay up-to-date with news if you can’t see the words on a page?

Although visually impaired people can listen to radio news, for many it does not provide the depth of analysis found in a newspaper, magazine or website.

In 1970 the first talking newspaper was launched in Wales – today there are 400 groups across the UK sending out recordings to 100,000 listeners.

But with technology that can read web pages aloud and news of funding cuts leading to one local service being cut what does the future hold for the recorded news service?

‘Great service’

Chris James, 54, began using the talking newspaper service in Swindon about 24 years ago.

He started losing his sight in the 1980s due to a condition called retinitis pigmentosa.

Previously he had enjoyed reading newspapers and motorsport magazines, so when a volunteer with Swindon Talking Newspapers recommended the service to him he decided to give it a try.

He said: “I can get local news from BBC local radio, which I do listen to, but the news headlines on the radio don’t provide the depth you get in a newspaper.

“Talking newspapers put the filling in the sandwich.”

Mr James said in his job in the housing maintenance department at Swindon Borough Council he was able to use a photocopier to scan in a hard copy which was then read aloud to him.

And talking newspapers are a useful way for him to know what is happening in his community.

He said: “It’s a great service, it’s free and run by volunteers who give up their time to help the visually impaired.”

Digital revolution

When talking newspapers were first set up the news was sent out on a cassette tape.

As technology improved some groups switched to CDs and in the last few years most have gradually moved over to memory sticks.

The stick does not need to be plugged into a computer as it can be used in an MP3 player designed for use by people with visual impairments.

Mike Wood, chairman of the Talking News Federation, which represents talking newspaper groups across the UK, said: “Around 270 have changed to digital recording across the UK with the rest slowly catching up.”

The service does not charge users, with funding coming from various sources including legacies, donations, grants and doing commercial recordings.

Mr Wood said although some services had struggled through the recession, with one closing down in the West Midlands, most were doing well.

“The vast majority are run by volunteers, it’s the ones that have paid staff that seem to have struggled,” he said.

‘Frustrated journalist’

One of those volunteers is Tony Vale who got involved in talking newspapers in the 1980s in Ipswich and is currently the chairman of Wymondham and Attleborough Talking Newspaper, in Norfolk.

He said volunteering with the charity appealed to him because it combined his other interests of hospital radio and editing a village newsletter.

“It suited me as a frustrated broadcast journalist,” he joked.

For his day job he worked in insurance and he is currently an adviser to the care home industry but as a volunteer he records news and features from local newspapers and is even able to conduct interviews that are recorded in the same way as radio packages.

He said: “A lot of our listeners are elderly and want their news how it was in the old days from a local newspaper or the parish newsletter delivered by a postman.

“People have a relationship with their local newspaper and it’s the same with talking newspapers – people tell us it’s like a friend being delivered through the letterbox every week.”

Reversing From Recovery

June 25, 2012

A press release from wearespartacus.org.uk:

New report warns car industry to lose out under welfare reform plans

A new report has highlighted the dangers to the UK’s economy following an analysis of the impact of welfare reform on the motor industry.

 

‘Reversing from Recovery’, published by the WeareSpartacus campaign group, analyses figures supplied by the Department for Work and Pensions and Motability, the organisation that supplies lease cars to disabled people claiming Disability Living Allowance. The report focusses on some of the impacts of the government’s plans to reform Disability Living Allowance (DLA), and its proposal to remove 280,000 disabled people from claiming the higher mobility rate of DLA, which currently qualifies them to lease a car under the Motability scheme.

 

The analysis estimates that, under DLA’s replacement benefit, Personal Independence Payments (PIP), there will be a 27% reduction in the number of working age disabled people, and a 17% reduction in the number of disabled people overall, qualifying for the Motability scheme.

 

Motability’s publication ‘Economic and social impact of the Motability Car Scheme’ (2010) identified the scheme’s contribution to the economy through employment generation and tax receipts. The new report shows that welfare reform plans will lead to a domino effect including the loss of:

·         3,583 jobs (from 21,080 jobs to 17,497 jobs in Motability-related industries)

·         £342 million contribution to GDP (from around £2 billion to £1.67 billion)

·         £79 million in tax receipts

·         Up to £324 million contribution to GDP from disabled people’s ability to undertake paid work.

Jane Young, an independent disability consultant who co-authored the report, said:

 

“It’s not just disabled people who will lose out under the Government’s welfare reform plans. Changing from DLA to PIP means fewer people qualifying for Motability cars to the tune of about 31,000 fewer vehicles a year. Less demand means fewer jobs for the car manufacturing industry, a lower contribution to GDP and the exchequer, and a knock on effect on the availability of cars in the second hand market, which also contributes to the economy.”

 

The report also raises concerns about future investment in the UK by car manufacturers, given the demand for new cars is going to drop as the government phases in its plans.

 

Rob Parsons, an Open University lecturer who also contributed to the report, added:

 

“We must remember, of course, that part of this picture is the impact of these changes on disabled people themselves.  85% of Motability car users say the car has a positive impact on their ability to access health services, whilst more than 1 in 3 of those able to work say it maintains or improves their ability to undertake paid employment. 7% of customers’ families say it enables a family member to gain or keep a job.

 

“We’ll see disabled people less independent, less likely to be able to get or keep a job and more likely to close businesses or give up self-employment. Having welfare reform plans which interfere with employment prospects is nonsensical. The Government should think again.”

 

The report is calling on the Government to give further consideration to the wider consequences of disability benefits reform, including consulting more widely, before finalising the regulations under the Welfare Reform Act.

 

For more information or to obtain a copy of ‘Reversing from Recovery’, the full report or summary version, contact:

 

Jane Young:  jane.young@wearespartacus.org.uk;  07775 892344, or

Bethan Morris:  beth.morris@wearespartacus.org.uk

Nicola Wilding Takes Next Step Towards Elective Amputation

June 23, 2012

A woman who wants to swap her right hand for a bionic prosthetic will undergo exploratory surgery in September to determine if the amputation can go ahead.

Nicola Wilding, 35, from Surrey, lost the use of her right hand in a car crash 12 years ago.

Viennese surgeon Oskar Aszmann will examine nerves in her forearm.

He may then transplant muscle to boost the nerve signals in her arm so they could steer a prosthetic.

Ms Wilding met Mr Aszmann for an initial consultation in London earlier this year.

She has since travelled to Vienna for tests during which electrical stimuli were applied to her arm.

“I saw Oskar in Vienna and was attached to a nerve pulse stimulator,” she told BBC News. “There were little spikes of nerve activity that Oskar said were no more or less than the patients who have had the elective amputation, which is positive.”

“We then discussed the next step, which involves me returning to Vienna in September so he can open the arm and see if the nerves there are sensory or motor nerves.”

“If they are sensory, then there is nothing that can be done and that is the end of that. If there are motor nerves, then he’ll remove muscle from my legs to implant on the forearm so I can work and strengthen the nerve and muscle and ultimately operate the prosthesis.”

Ms Wilding decided to explore the option of amputation after seeing a Newsnight film on the work of Mr Aszmann last year.

She has now started competing in triathlons to raise the money she will need for the operations, prosthesis and support, should she go ahead with the amputation.

Nerve biopsy

Speaking on the phone from Vienna, Mr Aszmann said: “She does have very faint signals in her forearm but she will need stronger signals to drive a prosthetic device.

“When I tap her hand, she says she can feel something, but we need to open up her arm to see if there are enough motor fibres to provide signals to the bionic hand.”

Mr Aszmann will remove a cross-section of the nerve fibres in her forearm during the surgery, which will be then undergo a staining procedure to determine within minutes which nerves are sensory (providing feeling) and which ones motor nerves (driving muscle movement).

The procedure is called an acetylcholinesterase stain.

If there are motor nerves, then Mr Aszmann will transplant muscle from the leg to boost the electric output of the nerves.

These electrical signals are essential if Ms Wilding is ever to control a bionic hand, and without them, the amputation would be pointless.

Mr Aszmann has to date performed two elective hand amputations, and both patients are now using their bionic replacements. A third elective amputation is scheduled to take place this week.