One In Ten Londoners Can’t Use Public Transport
One in 10 Londoners cannot access large sections of the public transport network in London because of mobility issues, a report has warned.
The London Assembly study found step-free access to stations falls far short of demand.
Val Shawcross AM, chairwoman of the transport committee, called the situation “simply unacceptable”.
Transport for London said it was already improving areas mentioned by the report.
The study claimed:
- Only 10 of London’s 270 Tube stations are completely step-free all the way from street level to train.
- Just one third of London’s 300 rail stations have step-free access from street to platform.
- While all London’s buses now have ramps, only half of London’s 17,476 bus stops meet the criteria for full accessibility.
Ms Shawcross said: “The fact that hundreds of thousands of Londoners cannot use the public transport network with relative ease is simply unacceptable.
“Transport for London must get on top of the situation now or risk leaving an increasing number of people excluded from travelling on trains, Tubes and buses.”
‘Taking forward improvements’
She added: “Despite funding pressures, we believe there are measures that could be put in place, reasonably cheaply and quickly, that would dramatically improve the transport experience for people with reduced mobility.”
A Transport for London spokesman said: “We are grateful to the Assembly for its recognition of the improvements we are making to accessibility on the transport network.
“We are already taking forward improvements in many of the areas referred to by the committee.
“We have the most accessible bus network in the UK. The number of Tube stations with level access from street to train is more than three times that stated in the report.”
Tumour Error Leads To £4M Payout
The husband of a woman left brain damaged by a delay in treating a tumour has said a £4.5m compensation pay-out cannot make up for what she has lost.
Frances Bowra, 48, was awarded the pay-out at the High Court after suing the Maidstone and Tunbridge Wells NHS Trust for breaching its duty of care.
Her husband, Kenneth Bowra, of Maidstone, said his wife’s “hopes and wishes” would never be fulfilled.
The trust has apologised for the errors made and said lessons had been learned.
Seven years ago Mrs Bowra was rushed to the A&E department at Maidstone General District Hospital after collapsing at home suffering from violent headaches and vomiting.
Partially paralysed
Solicitors for Mrs Bowra argued her condition deteriorated because of delays in diagnosing a brain tumour.
They also said there was a delay in transferring her to King’s College Hospital in south London where she underwent emergency treatment to relieve the pressure on her brain.
Mrs Bowra has been left partially paralysed, visually impaired and dependent upon the care of others.
The High Court awarded Mrs Bowra the pay-out on 10 November.
Before she fell ill, Mrs Bowra worked as a chiropody manager with the NHS. The keen dancer and dressmaker also provided chiropody services for the charity Crisis over Christmas.
Mr Bowra said: “You may think £4.5m is compensation. No figure compensates.
“You’re so lucky to be able to open your eyes and see the sunshine in the morning.
“All of her wishes, all of her hopes, no longer exist. They cannot be fulfilled.
“We’d have had a family, she would have the children she wanted.”
A spokesman for the NHS Trust said: “The trust recognised that there was a delay in diagnosis and providing treatment to Frances and has apologised to both her and her family for the errors made.
“The trust is pleased the claim has been resolved and offers Frances and her family its very best wishes for the future.”
JustGiving Page Of The Week: Rachel Groves
I recently saw a Tweet by @rachelcreative alerting me to her JustGiving page. She has set herself a challenge for 2010- to save as much money as possible, and donate what she saves to ME Research UK. I was so impressed that I just had to make hers this week’s JustGiving Page Of The Week. Her original target is £200, and she’s over half way there already. Great idea, Rachel, I hope you reach your target!
We Need To Get Faster Wheelchairs, Says David Cameron At PMQs
Readers, David Cameron wants to give us faster wheelchairs! well, whatever next! Please click here if you feel like a smile.
Vodpod videos no longer available.
David And Samantha Cameron Visit Son Ivan’s Special School
David and Samantha Cameron have made an emotional visit to the school attended by their son Ivan, who died last year.
The prime minister described Jack Tizard School in west London as an “incredible place” where their eldest child had been happy.
Mr and Mrs Cameron opened a new hydrotherapy pool and chatted to staff and pupils during the hour-long visit.
Ivan died aged six last February. He was born disabled and had cerebral palsy and severe epilepsy.
Mrs Cameron clutched her husband’s hand as they entered the school together.
She looked emotional as the prime minister recalled their son’s life.
He said: “I remember with Ivan it was one of the things that he most liked doing.”
‘Great compassion’
Mr Cameron added: “I remember how much he loved swimming and he will be looking down at that pool thinking, ‘I wish I was in there today’.”
Ivan, who attended the special school in Hammersmith for around two years, required intensive round-the-clock care throughout his life.
Mr Cameron said: “Our special schools are incredible places. You have a child, a special child like we did with Ivan. You worry like mad you are never going to find somewhere where he is happy, where there is great teaching, where there is love and great compassion.
“And when you find that place like we did with Jack Tizard, your heart lifts.”
The couple also launched The Big Splash charity, of which Mrs Cameron is the patron.
A spokesman for the organisation, which aims to raise money for disabled children in west London, said: “We’re delighted to have Samantha and David’s support in helping to raise much-needed funds.”
The Camerons have three other children: Nancy, Arthur Elwyn and Florence, who was born this summer.
Papworth Trust Photography Competition
I have just received the press release below from Julia Rutherford at Papworth Trust:
Leading disability charity Papworth Trust today launches its first photography competition, Independence, with prizes including a Sony Handycam DCR-DVD 115E camera worth over £300.
The competition will be judged by a panel including internationally reknowned photographer David Rose. Entries can be digital images or prints, and the competition will be judged in three categories:
· 16 years and under
· Over 16 years
· Professional photographers and previous photography competition winners
The independence theme has been chosen to make the competition as accessible as possible. Interpretations could include running your own life without interference or not relying on someone or something.
The judging panel comprises:
· Professional photographer David Rose, winner of several major UK and overseas Press Awards. A former staff photographer with the Independent newspaper, David covers many issues in Britain and the developing world, and now works for a range of titles
· Olivia Abbott has worked in magazines and newspapers for two decades and since 2007 has been editor of Agenda. She is also a keen amateur photographer.
· Chris Williams spent many years as a partner in a creative agency, frequently directing top professional photographers. In 2007 he started Williams Art, in Cambridge.
· Papworth Trust client Gordon Carter is a keen amateur photographer. He also volunteers with BBC Radio Cambridgeshire.
· Anna Brim works in Papworth Trust’s HR department. She is also currently studying towards a Photography degree and works part time as a freelance photographer.
When choosing the winners the judges will consider a range of factors including composition, originality, and interpretation of the theme.
Papworth Trust will display the winning entries in an online gallery, at an exhibition at Williams Art in Cambridge, and at Papworth Trust Centres in Basildon, Bury St Edmunds, Cambridge, Ipswich, Huntingdon and Sawston.
Prizes include a Sony Handycam DCR-DVD 115E camera worth over £300, plus other items kindly donated by Aloha photography (www.alohaphotography.co.uk) and Anthony Menswear (www.anthonymenswear.co.uk). The image which wins the Papworth Trust award will be used on the front cover of the charity’s 2011 Annual Review.
For a copy of the terms and conditions, and details of how to enter please visit www.papworth.org.uk, email photocomp@papworth.org.uk or write to Papworth Trust Photography Competition, Bernard Sunley Centre, Papworth Everard, Cambridge CB23 3RG.
BlindCraft Factory Saved
The BlindCraft factory in Edinburgh has been saved after city councillors agreed it could move to a three-day-week.
It means the plant can stay open while making savings of £700,000 a year.
Officials had recommended the loss-making plant should be closed but a last-minute deal has now been reached.
The 57 staff, who are mostly disabled, are employed by the council-funded charity to make mattresses. It has been operating in Edinburgh since 1793.
Scottish Parliamentary Committee Rejects Right To Die Bill
A Holyrood committee has recommended that a bill to legalise assisted suicide should be thrown out.
Independent MSP Margo MacDonald is behind the End of Life Assistance Bill, which would give terminally ill people over 16 the right to die.
The committee looking at the bill said it found no case for changing the law. The bill will now be debated by MSPs.
Ms MacDonald wants to give “autonomy” over how people die but opponents say it would encourage suicide tourism.
They believe the move would result in 1,000 people ending their lives each year.
However, Ms MacDonald, who has Parkinsons disease, dismissed the claims and said it was immoral that those who wished to end their lives due to terminal illnesses should have to travel to Switzerland.
The MSP for the Lothians has also accused fellow MSPs of making up their minds before hearing the evidence.
Although the special parliament committee has rejected the legislation, the matter will be subject to a full parliament vote within the next few weeks.
The committee’s stage 1 report, based on written and oral evidence, said it did not recommend the general principles of the bill to the Scottish Parliament.
Committee convener Ross Finnie said: “In the last few months, we have taken evidence on the bill’s proposals from a wide range of organisations including medical practitioners, palliative care charities, religious groups and legal experts based in the UK and overseas.
“Following detailed discussions on the evidence, we’ve concluded that there are several flaws in the bill.
“Fundamentally, the committee wrestled with the bill’s premise that it would help maintain an individual’s dignity and autonomy as they move towards the end of their life.”
The report concluded making a case on the grounds of “dignity” was problematic in defining “with dignity” and that grounds of individual “autonomy” were not accepted by all members of the committee.
It said there was a strong view that individual choice had to be considered within the context of society as a whole.
The report also found it would have been clearer for “assisted suicide” and “voluntary euthanasia” to have been dealt with as separate provisions, rather than combining them under one definition.
It is not illegal to attempt suicide in Scotland, but helping someone take their own life could lead to prosecution.
Ms MacDonald’s bill would allow people whose lives become intolerable through a progressive degenerative condition, a trauma or terminal illness to seek a doctor’s help in dying.
It also proposes a series of safeguards which would prevent abuse of the legislation.
In England, the director of public prosecutions has indicated he is unlikely to take legal action against those who assist the suicide of friends or relatives who have a settled and informed wish to die.
However, no such guidance has been given in Scotland.
Treacher Collins Syndrome
Like many 26-year-olds, Jono Lancaster has a job he loves, a beautiful girlfriend and takes pride in his appearance.
But unlike most young men, Jono has Treacher Collins syndrome, a genetic disorder that affected the way his facial bones developed while he was in his mother’s womb.
The condition, which is thought to affect up to one in 10,000 babies in the UK, means he has no cheekbones – so his eyes droop downwards – and he has problems with his hearing, so has a bone-anchored hearing aid.
It has resulted in several operations, numerous hospital visits and his parents giving him up for adoption 36 hours after he was born.
But although Jono is now happy with how he looks, he says he struggled with depression during his teenage years.
“I was desperate to have friends, I’d do anything. I had no confidence. I’d buy lots of sweets and give them to the other kids so that they’d like me.
“I ended up doing stupid things so that people would talk about me for a different reason to the way I looked.
“I set a firework off in class, I got up to no good. It was quite often alcohol related, I got quite a bad reputation amongst other mums and teachers.”
But he says deep down he was getting lonelier and lonelier.
“I used to hide how unhappy I was from my mum. She had already done so much for me.
“But I didn’t like to go out unless I had to. I’d do things like cut my own hair so I didn’t have to look at myself in a mirror.”
He says a pivotal moment came when his friend became the manager of a bar and offered him a job.
“It was something I really wanted to do – at 19 or 20 working in a bar is the norm – I thought why shouldn’t I do it?
“I’d be dripping with sweat before every shift, I was so nervous and scared about people’s reactions. Drunk people can be so horrible, so obvious.
“It wasn’t easy, but at the same time I met so many nice people who were genuinely interested in me and my face.”
It gave him enough confidence to start dating – “rather than spend evenings at clubs hiding in the toilets” – and even get a job in a gym.
“I’d done a diploma in sports science at college and a fitness instructors course but it is such an image-based industry – gyms are full of mirrors – I used to e-mail people asking for jobs rather than drop my CV off.
“Then one day I went in to a Fitness First gym and met my boss Shaun. We had a chat, I gave him a workout and we really hit it off.”
Jono says being thrown in at the deep end boosted his confidence levels.
Which worked out better than he imagined, because it was at the gym that he met his long-term girlfriend, 20-year-old Laura Richardson.
“I was testing her resting heart rate and it was beating over a hundred beats a minute, so I thought she must have liked me!
“She says when she first met me, she noticed my face, but now she no longer sees it. It was the first time I was able to be completely myself with a girl.
“And look at us four years later, we have just bought a house together in Normanton in West Yorkshire. We are completely in love.”
But last year Jono faced his toughest test yet. He decided to try and track down his biological parents.
“It was something I’d always wanted to do. As a teenager I’d been angry and upset and wanted to meet them for the wrong reason – to ask them why they’d abandoned me – but as I matured I realised they obviously felt they couldn’t cope.
“I thought things might have changed. That they might want to know I was happy.”
Jono says he was “heartbroken” when he was rejected all over again.
“It was awful. Awful. I cried and cried. But I have come to terms with it. It must have been one of the hardest decisions they ever had to make.
“I found out they’ve gone on to have two more children. I’m glad they have got a family. I’m happy, I hope they are happy too.”
Jono, who now works as a team leader with adults with autism, says he is a firm believer that everything happens for a reason, but wants people to be more aware of what Treacher Collins is – and how to deal with it.
“What really frustrates me and upsets me is when a child in a supermarket stares and his or her mother tells them off.
“I wish they could come and talk to me so that I could tell them about it – so that is seems more normal.”
He says he also wants to help families in similar situations to him.
“If someone had said ‘this is me, my wife, my job’ to me when I was younger it would have helped massively.”
But Jono says he still has one big question he has to face.
Although Treacher Collins is a rare genetic condition that can affect anyone, the chances of him passing it on to his children are thought to be about 50%.
“I’ve met families with babies with various disabilities and seen how well they cope.
“I really want to do the school run, take my child to dance, gymnastics or football, but how can I knowingly put my child through operations, hospital appointments and bullying?
“I play around with it in my head – it drives me mad. We’re still young, there is plenty of time, but it is something Laura and I are going to have to think about somewhere down the line.”
But Jono says he would not change the fact he was born with Treacher Collins syndrome.
“Doctors always asked if I wanted corrective surgery… to get my cheek bones built up, my teeth straightened or my jaw broken and realigned, but despite how depressed I got I thought ‘God made me like this’.
“I’m glad I didn’t choose anything. I’m proud of who I am. And Treacher Collins made me who I am today.”
BBC News – Queen to open motor neurone disease research centre
The Queen is to open the UK’s first purpose built research institute for Motor Neurone Disease in Sheffield.
The disease, which has no known cure, kills more than 1000 people every year.
The Sheffield Institute will also study other degenerative conditions such as Parkinson’s, Alzheimer’s and Multiple Sclerosis.
Jenny Hill reports
Vodpod videos no longer available.
Nicky Clark On Radio Again!
Special mother Nicky Clark was on the radio again this morning! This time, she was talking about Anti Bullying Week and how this relates to disability discrimination. You can hear her here on iPlayer for a week- starting at 41 minutes.
Special Parents Pledge Six Figure Sum To Autism Research Centre
A couple have pledged a six-figure sum to increase understanding of a little-known genetic condition that affects their son.
Gus Alusi and Reem Waines, whose son Kenz has fragile X syndrome, the main cause of inherited autism, are backing a new Edinburgh-based initiative.
The centre is to be the first of its kind in the UK and will bring together scientists and specialist doctors.
Between 12,000 and 15,000 people in the UK are affected by the syndrome.
The condition is caused by a genetic mutation and can result in severe learning disabilities and language impairment, sensory hypersensitivity and anxiety and hyperactivity.
The London-based family’s gift will help researchers focus on understanding the brain processes that underlie the conditions with the hope of developing more effective treatment for patients.
The Patrick Wild Centre for Research into Autism, Fragile X Syndrome and Intellectual Disabilities will be based at Edinburgh University.
Gus and Reem said: “This centre is what we have been hoping for since our son was diagnosed with fragile X syndrome.
“Until now we have had to travel to the USA for specialist help with his condition, but this new centre will be a hub for UK patients and their families, so that they too can access the pioneering research that will ultimately transform the treatment of these diseases.”
‘Desperately needed’
The centre has also received support from Edinburgh University graduate Dr Alfred Wild, whose family was affected by autism.
The centre, named after Dr Wild’s brother Patrick, is to build on an “already strong” research base at the university.
Dr Andrew Stanfield, one of the directors of the new centre, said: “There are very few effective therapies for autism and intellectual disabilities.
“Improved interventions are desperately needed.
“This new centre will enable scientists and clinicians to develop research to understand the fundamental origins of these conditions and translate these findings into advances in clinical practice.
“Although we are at a very early stage in this process, the potential is huge and it’s an exciting time to be involved with this field.”
The research will be carried out by scientists at different sites across Edinburgh in a “virtual” centre. It is hoped a building to house the centre will be built in the future.
Disabled Households In Wales Driven To Hardship, Says Report
Disabled households in Wales are suffering serious financial hardship due to rising accommodation, transport and household costs, a report says.
A Muscular Dystrophy Campaign survey of 650 homes affected by muscle disease found 60% were struggling to pay bills.
The charity is calling on councils to consider the effect that their financial decisions might have on families affected by disability.
It said supporting their independence made long term financial sense.
The report said many households affected by disability were finding it hard to meet heating, gas and water bills and are facing fuel poverty this winter.
Families were also draining their savings to pay for accessible accommodation or adaptations to their homes.
And the current benefits system was not covering the additional cost of living for three-in-five households affected by disability in Wales.
The charity said muscle disease patients often experienced high fuel bills caused by vital extra heating, the charging of equipment like electric wheelchairs and ventilation machines to help them breathe.
While all Britons over 60 automatically receive a Winter Fuel payment of up to £400, severely disabled people and those with serious health conditions receive no help with fuel unless temperatures plunge below freezing for seven days, it said.
Other financial burdens arise as progressive diseases worsen over time and families are forced to adapt their homes.
The maximum £30,000 adaptation grant that can be applied for from local councils frequently does not meet the total cost of the work needed, said the charity.
This often leaves families forced to take out loans or re-mortgage their properties to cover the rest, it said.
Others are forced to rent private adapted accommodation at unaffordable prices.
Robert Meadowcroft, Muscular Dystrophy Campaign’s acting chief executive, said: “The ‘Disability Premium’ has seen families living with muscle disease under extra pressure.
“We firmly believe that supporting patients, their carers and families in coping with the everyday cost of living with disability helps to households to maintain independence in the long run.
“The right support can keep young people with disabilities working, carers caring, families in affordable housing and older people independent and in their own homes.”
Congratulations Geoff Holt MBE!
Just a quick post to congratulate Geoff Holt who, I’ve just read, collected his MBE from the Queen yesterday. This is very well deserved and very good news!
Life Sentence For Murderer Of Philip Holmes
A 23-year-old described by police as dangerous and unpredictable has been sentenced to life in prison for the murder of a disabled man.
Martin Mather, from Rhyl, Denbighshire, admitted attacking Philip Holmes, 56, in his flat last April.
Mr Holmes, who walked with a frame, had his face, chest and neck repeatedly kicked or stamped during the attack.
At Mold Crown Court Mather was told he would serve a minimum of 17 years before he can be considered for parole.
Mr Holmes, a former coal merchant, walked with a frame after an accident at work at the age of 18 left him disabled.
‘Gentle, vulnerable man’
The judge said Mather had shown no remorse for the murder of Mr Holmes, who was described in court as a “gentle, vulnerable man”.
The court heard that Mather met his girlfriend after the attack, watched television and for the next eight days acted as normal.
Mather pleaded guilty to the murder.
A pathologist told the court the dead man’s injuries were similar to that of a car crash victim.
Mr Holmes’ sister, Carolyn Trehearn, said: “He was two days short of his 57th birthday when he was murdered and as a family we had plans to meet and celebrate this occasion.
“Martin Mather deprived us of this opportunity.
“Nothing will ever bring Phillip back and he is sadly missed by his brothers, sisters and our extended family, although he will never be far from our thoughts.”
Det Ch Insp John Hanson said: “Martin Mather is a dangerous, unpredictable individual who was responsible for a brutal and sustained attack on a vulnerable member of the community.
“He showed a callous disregard for Phillip and whilst in police custody showed no remorse whatsoever for his actions.”
CPS North Wales crown advocate Gareth Preston described it as a “vicious and senseless attack which took the life of an innocent man”.
He added: “It is hard to know for certain the exact motivation behind this attack – only Martin Mather truly knows what drove him to commit such an horrific crime.
“What is clear is that Mr Mather was aware of, and exploited, Philip Holmes’ vulnerable situation.
“In interviews with police after his arrest, Mr Mather also made disparaging remarks about Philip Holmes that displayed hostility toward his disability.”
Passive Smoking Linked To Hearing Loss, Finds Study
People who are exposed to the second-hand smoke from others’ cigarettes are at increased risk of hearing loss, experts believe.
Doctors already know that people who smoke can damage their hearing.
The latest study in the journal Tobacco Control, involving more than 3,000 US adults, suggests the same is true of passive smoking.
Experts believe tobacco smoke may disrupt blood flow in the small vessels of the ear.
This could starve the organ of oxygen and lead to a build up of toxic waste, causing damage.
The harm is different to that caused by noise exposure or simple ageing.
In the study, the researchers from the University of Miami and Florida International University looked at the hearing test results of 3,307 non-smoking volunteers – some who were ex-smokers and some who had never smoked in their lifetime.
Listening problems
The tests measured range of hearing over low, mid and high noise frequencies.
To assess passive smoke exposure, the volunteers had their blood checked for a byproduct of nicotine, called cotinine, which is made when the body comes into contact with tobacco smoke.
This revealed that people exposed to second-hand smoke were far more likely to have poorer hearing than others, and to a degree where they might struggle to follow a conversation in the presence of background noise.
Passive smoking increased their risk of hearing loss across all sound frequencies by about a third.
Dr David Fabry, who led the research, said: “We really do not know exactly how much smoke you need to be exposed to in order to be at increased risk. But we do know that the threshold for damage is very low.
“Really, the safe level of exposure is no exposure.”
Dr Ralph Holme, head of biomedical research at the RNID (Royal National Institute for Deaf People), said: “We already knew from our own research that regular active smoking is a significant risk factor leading to hearing loss and this new study is important as it highlights the increased risks posed by passive smoking too.
“Hearing loss can often be very frustrating and lead to social isolation, if not quickly addressed.
“Before you next light up a cigarette, consider how it could impact not only on your own long-term hearing but your friends’ and relatives’ too.”
BBC Child Carers Day
The BBC have a special collection of reports as part of a Child Carer’s Day today. This link will take anyone who is interested to: The results of a survey on how much support child carers get, a description of a day in the life of a young carer compared to a day in the life of her best friend, and an audio interview with a young carer and her disabled mother.
Why? Why? Why?
Joanne Hill. Frances Inglis. And now Satpal Kaur-Singh. What do these three women have in common? They have all killed their disabled children, cruelly, and almost certainly against the will of the children- at least, they never stopped to consider what their children wanted, or much less to ask for their opinions.
Joanne Hill, for those who don’t remember her case from 2008, drowned Naomi, 4, in a bathtub because she was ashamed of her mild Cerebral Palsy. She was reported to have had a history of mental health problems. Frances Inglis is reported to have had Post Traumatic Stress Disorder when she injected Tom, 22, with heroin as he slept. Reports say that Satpal Kaur-Singh, who forced her autistic son, Ajit, 12, to drink bleach hours after she found out he could be taken into care, had a personality disorder.
Mental health problems seem to be the only reasonable explanation anyone can have for killing their own child. No parent of any child, disabled or not, would ever consider doing any such thing unless they had a mental health problem.
I am a disabled person who is lucky enough to have parents who have given me a good life, and would never consider doing any such thing. Thankfully, I have disabled friends who can say the same thing. That is one of the reasons why I feel sad and shocked when I think of these cases.
I believe that disabled people have just as much of a right to live for as long as possible as anyone else does. Too many of our lives are already shortened by our disabilities- nothing and no one should make them any shorter than they have to be.
I know how difficult disability is to handle, especially for non-disabled parents, who know what their disabled children are missing out on. But real parents should love their children unconditionally. If they can’t, I only wish that, before taking such unthinkable actions, they would realise that they do have other options. Adoption and fostering are two of these options- Joanne Hill had reportedly begged Naomi’s father to consider both. Ajit Singh was killed because his mother feared he would be taken into care, but, considering the actions that she took, he might have been better off there.
All parents of disabled people need support to come to terms with their child’s disability, and they should be given as much of this as is needed. Otherwise we might see more and more cases like these, and then we might go back to a time when all disabled people are taken away from their parents, because Social Services are worried for their safety at home. For this disabled child of loving parents, that is a scary thought.
Slivers Of Time
Any thoughts on the ‘slivers of time’ system, readers? It sounds good to me as a DisAbled worker who has had one part time office job so far. I will most probably never be able to work a full week, as a direct result of my DisAbility. So it would definitely work for me if I was to find another job that I couldn’t do from home.
I’m particularly interested to know whether it would work for carers. Comments are, as always, very welcome below.
Call To Fix Inaccessible Web Sites
A campaign has launched aimed at improving the online experience for people with disabilities.
A new site called Fix the Web allows disabled and older people to report problems they find when surfing.
There are an estimated six million disabled and older users in the UK but many sites continue to cause problems for them.
The new scheme, launched by charity Citizens Online, will see volunteers report complaints back to site owners.
Fix the Web has set itself the ambitious target of getting 10,000 volunteers dealing with 250,000 websites within two years.
Common issues that arise when disabled users surf the web include:
- sites which are incompatible with screen readers
- text that is difficult to read
- websites that prohibit access for non-mouse users
- over-fussy and distracting layouts.
As well as reporting faults via the website, volunteers will also be able to e-mail or tweet their issues.
No ‘name and shame’
Dr Gail Bradbrook of Citizens Online called for a “committed group of tech volunteers” to take charge of the problem.
“I believe many techies would be horrified to think that the web they love so much is excluding people. I firmly believe that this isn’t a problem disabled people should have to deal with on their own,” she said.
“We expect to see ramps, extra wide doorways and adapted toilet facilities, but what about the equivalent online?
“Do we consider that websites might need their own virtual ramps?” she added.
But Dr Bradbrook was keen to stress that the exercise would not be a “name and shame” campaign but that volunteers would work alongside website owners.
According to the World Wide Web Consortium, only 19% of websites meet the minimum standard for web access.
In 2008 it drew up a set of guidelines to improve web accessibility.
Fix the Web is one of the initiatives drawn up by the e-Accessibility Forum, which was created in October by Communications Minister Ed Vaizey.
Mr Vaizey has pledged a “step-change” in e-accessibility by 2012.
Woman Admits Killing Autistic Son By Making Him Drink Bleach
I can only say what I have had to say too many times since I started blogging, in similar cases- this person doesn’t deserve to call herself a parent.
A mother has admitted killing her 12-year-old autistic son by making him drink bleach.
Ajit Singh-Mahal was found with fatal injuries at the family home in Barking, east London, in February.
Satpal Kaur-Singh, 44, pleaded guilty at the Old Bailey to manslaughter by reason of diminished responsibility. She had denied the boy’s murder.
The case has been adjourned for psychiatric reports. She is expected to be sentenced on 13 December.
A post-mortem examination gave a preliminary cause of death as ingestion of a “caustic liquid”.
Social worker concerns
Singh, of Lambourne Road, Barking, killed her son Ajit hours after she refused to co-operate with council staff at a meeting over his care, the Old Bailey heard.
But she had appeared “calm” and no-one else who attended had “any concerns about her immediate behaviour”, the court was told.
Hours later she rang police to say: “I’ve just murdered my son and I’ve tried to kill myself.”
Social workers at Barking and Dagenham Council had concerns about Singh in the months before she killed her son, the court heard.
Rhys Thomas Could Be Cared For At Home In Months
The father of a teenager who became disabled after choking on chewing gum says an agreement means his son could finally be cared for at home.
Rhys Thomas, 19, of Holywell, Flintshire, is unable to speak, see, or move after gum became lodged in his windpipe in 2007.
He is still in a care home and his father Grahame has been campaigning to have his son brought home.
The Betsi Cadwaladr University Health Board has been asked to comment.
Rhys was 15 when he had been chewing gum before he went to bed.
It became lodged in his windpipe and he suffered a heart attack, thought to have been caused by lack of oxygen.
He is currently cared for at a home in Colwyn Bay, Conwy.
Mr Thomas said the family were initially told they could bring Rhys home for 24-hour care by 1 November, but spoke of his frustration after the move was delayed.
At the time, he told the BBC News website: “In the meantime we’re concerned, with all the cuts that are happening at the moment, that someone might actually say it’s too expensive to bring him home.”
However, Mr Thomas said an agreement had now been reached.
‘Advert’
He said: “The Betsi Cadwaladr University Health Board have agreed a package of care in the community with the Leonard Cheshire organisation, the same group that are looking after him at the moment.
“The advert is out for staff to come and work with him at home.
“The timescale, we’re led to believe, is no later than 1 March.”
Mr Thomas, who will sit on the interview panel for potential carers, said any staff recruited would need to be trained before caring for his son.
He said it was “disappointing” Rhys would not be home for Christmas, but welcomed the “positive” news he could be home within months.
Edinburgh Council Officials Recommend Closure Of BlindCraft
The closure of Edinburgh’s BlindCraft factory has moved a step closer with a city council report recommending it be shut down.
The 57 staff, who are mostly disabled, are employed by the council-funded charity to make beds and mattresses.
But council officials have reported the only way to achieve savings of £700,000 per year is to stop production.
They are recommending half the money saved is ploughed back into supporting disabled people into employment.
A decision is likely to be taken about the future of the factory when the council – which is losing about £1m a year on the venture – meets next Thursday.
BlindCraft has been operating in Edinburgh since 1793.
The latest report by council officers said: “Since 2003, the council has funded a level of deficit which cumulatively has totalled around £12m.
“Over recent years, stringent cost controls have been put in place and the level of subsidy required has stabilised at £1m per annum.
“This level of subsidy is unaffordable given the pressures facing the council and the council requires a budget saving of £700,000 for 2011/12.”
The report had looked at a number of savings options including reducing the factory’s weekly operation, but it said curtailing opening hours would only be a short term fix.
The report concluded: “During the period of statutory consultation, during which the engagement of staff-side representatives was exemplary, the only option remaining that delivers the £700,000 required savings is the closure of BlindCraft.”
Officials recommend that £365,000 be ploughed into schemes enabling disabled people to be employed.
Legal Help For People With Autism At Risk
The support people with autism get from the police and criminal justice system could be hit by Home Office cuts, a senior legal figure has warned.
Police officers are due to be trained by Autism West Midlands to identify people with autistic spectrum disorders.
Professor Andrew Sanders from the University of Birmingham’s Law School said the training included sessions on video taping interviews with autistic victims of crime – soon after offences are reported.
“This alleviates some of the problems of memory,” he said.
“We made various recommendations that would make it easier for the victims and the government did implement those recommendations over a period of years.”
But Professor Sanders said he feared the impact of the government’s Spending Review could undo so much positive work.
“My worry is that the protections that we give to vulnerable people are not regarded as front-line,” he said.
“They are regarded as backroom stuff.
“But for vulnerable people many of these backroom services are absolutely vital if we’re not to go back 20 years to the bad old days when vulnerable people found it exceptionally difficult to get a conviction in their cases. “
Nick Herbert, Policing and Criminal Justice Minister, told the BBC: “We are committed to ensuring that the justice system is fair, accessible, and delivers the support all victims and witnesses deserve and demand, including children or vulnerable people.
“There are many measures to help vulnerable victims through the criminal justice system including the use of special measures – giving evidence in court by live-link or with the support of an intermediary who can also help vulnerable victims and witnesses through the police investigation stage.
“The government is currently reviewing the services available to victims and their families to ensure they have access to the best available support.”
Inside Out West Midlands – BBC1 1930 GMT on Monday 15 November
A Review Of Tribes
Just a quick post to link to this review of Tribes by Charlie Swinbourne, who usually writes for BBC Ouch!, in today’s Guardian.
Frances Inglis Loses Appeal
Readers, I realise that many of you may not agree with me, and that is your choice. I have just read that Frances Inglis, who was jailed for life earlier this year for the murder of her disabled son, Tom Inglis, has lost the appeal she launched against her conviction.
I can’t tell you how happy I am to hear this news. This is a verdict that should be celebrated by all those disabled people who, like myself, believe in the right to live, and by all those very special parents of disabled people who give their time and energy to making our right to live possible, and to giving us the best lives we are able to have.
I have summed up the case and my opinion on it here.
JustGiving Page Of The Week: Helen Copeland
Arthritis and skydiving aren’t two words usually found in the same sentence. So when @hellycopeland Tweeted recently about her JustGiving page, I was so impressed that I decided to make it this week’s Same Difference Justgiving Page Of The Week. You see, next May, she’ll be going skydiving, in a brave attempt to raise some money for the National Rheumatoid Arthritis Society. Good luck Helen!
One Thing You Didn’t Know About Ten Celebrities
BBC Ouch have made a list of ten dyslexic celebrities. Don’t worry, readers, I couldn’t believe my eyes when I read it either.
Disability Discrimination: Job Interview
I used to love this when it was a TV ad, long before this blog. Just because of that, I thought I’d share it here.
Vodpod videos no longer available.
EasyJet Strikes Again
I’m linking to this article from today’s Sun, about Craig Murray, who was not able to fly EasyJet because his wheelchair is, apparently, too heavy, and would have had to be taken apart to meet ‘health and safety regulations.’
All I can say to any DisAbled people who are planning to fly EasyJet is… don’t. Please. They keep making it clear that they don’t want us.
BBC News – Strictly’s Kara Tointon: Reading was ‘scary’
Strictly Come Dancing star Kara Tointon has spoken publicly about her dyslexia for the first time. The former EastEnders actress was diagnosed when she was seven years old.
The British Dyslexia Association believes that one in 10 people are affected by dyslexia in the UK. The condition makes reading, spelling and writing difficult.
The BBC’s Sam Naz spoke to Kara about her experiences
.Kara Tointon: Don’t Call Me Stupid is on BBC Three, Thursday 11 November, 2100 GMT and afterwards on iPlayer.
Vodpod videos no longer available.
Olivia Newring
The mother of a 10-year-old disabled girl who had her wheelchair stolen says it has been recovered but is badly damaged.
Olivia Newing, of Canton, Cardiff, had her wheelchair taken while she was visiting her grandmother on Sunday.
It has since been found but her mother, Carmel Boston, said parts were missing and a wheel had been damaged.
Police said a 13-year-old boy had been arrested on suspicion of theft.
The wheelchair was taken on Sunday afternoon from outside Olivia’s grandmother’s house in the Ely area of Cardiff.
Ms Boston said it had since been found but was currently unusable because of the damage.
“The foot plates have been taken off, the arm rests have gone and they have ripped the seat,” she said.
“I think they’ve done something to the wheel because it’s bent and not opening fully.
“It’s unusable so someone is coming on Friday to have a look at it and see if it can be repaired.”
Olivia, who has cerebral palsy, was left devastated because she thought she would have to miss her dance class.
“She’s supposed to be going to dance tonight [Tuesday] and I’m still going to take her,” said Ms Boston.
“She will try to sit on a normal chair to watch rather than take part.
“She’s been going there since it opened a year ago and she absolutely loves it.”
In an emergency
Olivia, who attends Trelai Primary School in Ely, has a frame which she can use to get around but it is only suitable for short distances.
Ms Boston said she had been told that Olivia could not have another wheelchair because she had one at school.
“She uses that one at her desk for her work at school and if that one broke at home, she would be stuck at school,” she said.
“We’ve got a spare one from when she was two or three [years old] which can be used in an emergency but it’s a bit of a squeeze.
“The people of Ely have been fantastic. They’ve been willing to donate money to buy her a new wheelchair.”
Happy 75th Birthday To The Talking Book!
Today is the 75th anniversary of the RNIB’s Talking Books service. To mark this special day, I’d like to draw your attention to a post I wrote here two years ago, when I was searching for presents for my severely DisAbled friends. I had only just realised at the time that audiobooks were available in ordinary bookshops, as well as from specific blindness charities.
Talking Books and audiobooks may have been invented for those who don’t have eyesight, but I would just like to remind those lovely people at the RNIB that they are just as useful for severely disabled people who can’t use their hands to hold a paper book, or to turn a page. An audiobook can be turned on for them at the flick of a switch, giving them great pleasure and allowing their carers, who would otherwise need to hold books and read them aloud, a short break, knowing that the person they care for is happy and busy- something that is rarely possible for many.
So thank you for the Talking Book, RNIB. May it continue to bring pleasure to people with all DisAbilities for another 75 years!
Documentary Maker Looking For Gay People With Visual Impairments
I have just recieved the email below from Leeanne Coyle at Insight Radio:
Hi everyone,
I’ve had a call from an Edinburgh based photographer who is looking for gay people with a visual impairment to take part in a documentary. It’s on behalf of visual artist Dany Marti http://danimarti.com/
Ideally the person would be based somewhere on the central belt of Scotland but those interested who live further afield will still be considered.
If you know anyone that fits the bill please pass this email on to them. Or if you’re able to point him in the right direction please email David Grinly on dgrinly@gmail.com
Many thanks,
Leeanne
Congratulations Major Phil Packer MBE!
http://twitter.com/#!/samedifference1/status/1996944708739072
Congratulations Sir! Very well deserved!
PC David Rathband Wins Pride Of Britain Award
The policeman shot and blinded by gunman Raoul Moat has received an award for the dignity he has shown.
Pc David Rathband was shot in the face as he sat in his patrol car in Newcastle in July.
The prize, in the emergency services section of the Pride of Britain awards, is in recognition of his courage in dealing with his injuries.
Mr Rathband has said that he “bore no malice” towards Moat, who later shot himself in Rothbury, Northumberland.
Moat had shot his ex-girlfriend Samantha Stobbart and her new boyfriend Chris Brown – killing him – before attacking Pc Rathband.
He was found following a massive manhunt in Northumberland.
Pc Rathband has set up a charity called the Blue Lamp Foundation and is trying to raise £1m to help injured members of the emergency services.
Daniel Biddle
A survivor of the 7 July blast at Edgware Road Tube station has told how he was standing next to the plot ringleader when he detonated his bomb.
Daniel Biddle, 31, was blown from the carriage and lost both legs, his left eye, his spleen and pints of blood.
He told the inquest into the 2005 attacks he saw the bomber’s arm move quickly and then a “big, white flash”.
Mohammad Sidique Khan killed himself and six other people when he detonated the device on the Circle Line train.
Mr Biddle also said a 20p piece remained lodged in his thigh bone, and that other shrapnel, including his door keys, was removed by surgeons.
Mr Biddle described how Khan, who got on the westbound train at King’s Cross, sat between 6ft and 10ft away from him before detonating his bomb by pulling a white cord.
Attending the Royal Courts of Justice for the inquest, Mr Biddle said: “The train entered the Tube tunnel, I looked around.
“As I looked around, he looked up and I saw a quick movement. Then there was a big, white flash.
“The kind of noise you get when you tune a radio in. It felt like the carriage I was in expanded at a fast rate and then contracted quickly.
“And with that it blew me off my feet and through the carriage doors into the tunnel.”
He also said that Khan “looked up and along the carriage and just looked down” before he set the device off.
“He didn’t say anything or shout anything I remember hearing. He got his head down, moved his arm and the next thing I am outside the train.”
‘If only’
Mr Biddle, a construction manager, was taken to St Mary’s Hospital in Paddington and the inquest heard how his heart was massaged by hand as medical staff fought to save his life.
He spent several weeks in a coma and needed dozens of pints of blood in transfusions.
Earlier, the inquest heard how he had caught that particular Tube train because he was running late after waking with a migraine.
He let the first train to arrive at Liverpool Street pass because it was so crowded and then missed his stop at Baker Street because he was sending a text message.
“People were getting on and off. I didn’t really pay particular attention to anybody,” he said. “I saw a young Asian guy get on King’s Cross and sort of walk along the carriage and sit down, but I didn’t really think anything of it.
“There was nothing about him that made me think he was a danger.”
Coroner Lady Justice Hallett said the words “if only” must resonate in the minds of many of the survivors and their families.
She told Mr Biddle: “Given the large number of factors that combined to put you on that train, I pray they do not haunt you.
“You have suffered so much and your survival is inspirational.”
‘Very basic’
The inquest heard from a passenger on the train who helped save Mr Biddle’s life.
Adrian Heili, who served in Kosovo and is a trained first aider, said choosing who to help was the “hardest” decision of his life.
He heard Mr Biddle’s screams and clambered under the train to reach him on the tunnel floor.
Mr Biddle was trapped under a carriage door and upon lifting the sheet of metal, Mr Heili realised he was missing a leg and set to work making tourniquets from his belt and shirt.
Mr Heili, from South Africa, requested medical supplies but told the inquest he was given a “very basic” first aid kit.
He waited with Mr Biddle until he was taken away in an ambulance and returned to the wrecked carriage to help other injured survivors. He was in the last group of people to leave the train.
Coroner Lady Justice Hallett said his fellow passengers were “extremely fortunate” to have him there on that day.
“I can’t believe the brave Mr Biddle would have survived his horrific injuries but for your intervention,” she said.
The inquests into the deaths of the 52 victims got under way in October, and this session was the first to specifically focus on the Edgware Road Tube bombing.
It began with relations of Khan’s victims reading statements about their lives and the type of people they were.
Katy Brewster talked about her father Michael, Veronica Downey spoke of her husband Jonathan, Graham Foulkes described his son David, and Ros Morley talked of her husband Colin.
Statements were also read out on behalf of Julie Nicholson who lost her daughter Jennifer, and Hazel Webb, who lost her daughter Laura.
I’m not sure what to say about this article. Any thoughts, readers?
The prison service is to pay out £20,000 in damages to a prisoner who uses a wheelchair in compensation for the “degrading” treatment he received while in Belmarsh jail in London.
The Ministry of Justice conceded the claim for disability discrimination today made by Abdullah Baybasin, a 53-year-old Turkish Kurd. He was acquitted at a retrial last month of being a drug baron who conspired to supply 2.3kg of heroin.
Baybasin said that when he was first taken to Belmarsh in 2004, he had to look after himself. There was no help from staff for him while using the toilet or bathing so he had to rely on other prisoners.
At one point during his sentence he was told to stand up by a prison officer who told him the fact he was disabled made no difference. Even when he was later provided with a care assistant, there were always delays which meant that he was left for unacceptably long periods in his bed having soiled himself, on the toilet or in a cold bath.
“The treatment I received at HMP Belmarsh was very degrading and at times I struggled to cope. I thought I would die in prison, and often thought things would never get better,” he said.
He said no account was taken of his disability, which meant that during his first three years he had no access to education, the library or the gym. His first visit to the library was this summer, only after his legal action had been brought to court.
“Although it hurt me to do so, I felt I had no option but to instruct my solicitors to bring a claim against the prison to try and stop the very bad way in which I was being treated and make them acknowledge the problem,” he said today in a statement.
“This claim is not about money. What is important is that the defendant has publicly acknowledged that their treatment of me at HMP Belmarsh was unlawful and they have apologised for this. Hopefully, this means that the Ministry of Justice will change the way that they care for all disabled prisoners.”
Although Baybasin had been granted political asylum in 2004 he was described as one of the most dangerous drug dealers in Europe when he was convicted in 2006 and sentenced to 22 years. But the court of appeal directed a retrial and Judge Charles Byers at Woolwich crown court last month ordered the jury to find him not guilty as there was no direct evidence of his involvement in a drug smuggling conspiracy.
A Ministry of Justice spokesman said it was open to all prisoners, staff and third parties to pursue civil litigation claims for any perceived wrongdoing.
“Each litigation case is dealt with on its merits and, so far as the evidence allows, all claims are robustly defended,” the spokesman said. “In fact the Prison Service defends significantly more civil claims than are settled. Such claims are only settled on the basis of strong legal advice. The amount of compensation is determined following a full analysis of all the available evidence and taking account of the Judicial Studies Board guidelines.”
Families Denied Legal Aid For Epilepsy Drug Case
Dozens of families who blame an epilepsy drug for causing birth defects in their children say they are devastated that legal aid to sue its maker has been withdrawn.
Women who took sodium valproate in the 1990s claim they were not given adequate warnings of possible harm.
The Legal Services Commission, which runs legal aid, has concluded the case is not sufficiently likely to succeed.
Manufacturer Sanofi Aventis denies failing to provide proper warnings.
Spina bifida
About 80 families have begun action for damages against the firm, claiming the drug – also known as epilim – caused severe disabilities in children including spina bifida, heart damage and learning difficulties.
BBC health correspondent Adam Brimelow said the refusal of legal aid meant this action, which had been seven years in the planning, now appeared close to falling apart just days before it was due to go to the High Court.
Karen Buck and John Coyle, whose daughter Bridget is severely handicapped, said they were devastated legal aid had been pulled just before the case was due to be heard.
Mr Coyle, from Stanmore in north-west London, told the BBC: “As a family we feel devastated because the case has gone on for over six years and the legal aid have funded it all the way along.
“Everybody has the belief that it [the case] has a better chance of winning than not, and just everybody is devastated that the finances have been pulled.”
Bridget’s mother took an increased dose of epilim during her pregnancy in 1997/8, but said she was not made aware of any potential risks to her child.
Her daughter has spina bifida, is unable to walk or talk, is herself epileptic, and requires 24-hour care.
Mr Coyle said: “There didn’t seem to be any information available at the time Karen fell pregnant about taking epilim in pregnancy.
“I think the information has definitely improved quite a lot. They’ve become more aware and have accepted more that there are a lot of risks of problems in pregnancy with epilim, I’m not sure the drug company has accepted full responsibility.”
Sanofi Aventis said it had sympathy for the claimants but insisted it had always provided appropriate warnings.
The company said it regularly provided authorities with updated safety data.
Epilepsy is the most common serious neurological disorder affecting people of all ages, with one person in 50 expected to develop it at some time in their life.
Sodium valproate is prescribed to people with epilepsy to prevent seizures in the brain.
Weir Wins First New York Marathon
Paralympic champion David Weir claimed his first New York Marathon wheelchair title after edging out Japan’s Masazumi Soejima in a thilling finish.
The 31-year-old Briton surged past last year’s runner-up in the final 200 metres to win in a time of one hour 37 minutes 29 seconds.
The pair had broken away from the rest of the field around the 18-mile mark.
But there was disappointment for Shelly Woods who could only finish seventh in the women’s wheelchair race.
It was won by American Tatyana McFadden from compatriots Christina Ripp and Amanda McGrory.
In the men’s race, defending champion Kurt Fearnley took an early lead before London Marathon winner Josh Cassidy took over but Weir was never too far away from the action.
Fearnley’s challenge faded and Weir and Soejima broke away to fight it out for the win between them and it was the Briton who proved strongest in the push to the line.
Emma Henderson: Author And Special Sister
I hope Emma Henderson wins the prize!
In the 1980s, Emma Henderson saw her sister move from the mental hospital she had lived in for 35 years to a small home in the community.
She saw Clare thrive and grow in independence, but the question “What if?” has always haunted her.
What if Clare had had a different kind of life? What if she had had the language to communicate her hopes and desires? And what if she had been born now, when people with similar disabilities face a very different future?
The question proved the inspiration for the Oxford graduate’s first novel, weaving together themes of medicine, love and loss set against a backdrop of social change.
Clare was the inspiration for the book’s main character, Grace, a severely-disabled child who finds love against the odds in a care home.
“I do have memories of going to visit her,” says former teacher Emma, who now lives in London.
“But what I think I’ve done in the book is not only elaborate them, falsify them if you like, but I think I’ve done quite a lot of time-slipping with my memories.”
‘Sense of confusion’
Clare was born in 1946 with various physical and mental handicaps for which she was never given a formal diagnosis.
After being left partly paralysed by polio, she was deemed “ineducable”, and at the age of 11 went to live in a mental hospital.
Emma says there was no taboo about talking of her sister, but she grew up with a “sense of confusion” about how to explain Clare to her friends.
“I didn’t have any language to describe my sister to the rest of the world,” she explains. “There were lots of words used, and I did ask, and I did get answers, but they didn’t add up to very much.
“Physically handicapped, mentally defective, was one of the phrases and I did sometimes say that, but the look on my friends’ faces, aged 10 or 11, with that rolling off my tongue was just perplexed.
“So it was a problem – for even if there was the will to talk about it, there weren’t the words, somehow.”
Emma says that once Clare left the children’s wards, she was able to work in the hospital, which she seemed to enjoy and found sociable.
“My sister did come home, but not very often, partly just because of the logistics of it in those days.
“And when my parents went to see her, if I went with them, we would, as she got older, increasingly go out with her shopping or for a picnic, that sort of thing.”
Guilt and anger
Clare spent 35 years in the hospital, until the winds of change ushered in the era of care in the community.
“She didn’t leave the hospital until it was due for closure – so everybody had to leave. It was an enormous problem,” says the author.
“Just what to do with all these people, especially the ones who were getting on a bit – finding provision for them was very difficult in the new system.
“The responsibility fell back on the local authorities so my sister was found somewhere to live in Hounslow, which is where she originally came from, and where my mother still lives.”
“And of course I can’t speak for anyone else, but for her it appeared to be a very happy solution.
“For the last few years of her life, she appeared to blossom.”
Emma, 52, has written of her guilt and anger “at the fate that dealt such unfair cards”. After Clare’s death in 1997, she was compelled to write a novel inventing a story that explored the “What if?” question.
“The book is a tribute to the aspects of my sister’s character that I remember with great affection,” she says.
Emma Henderson’s novel Grace Williams Says It Loud has been shortlisted for the Wellcome Trust Book Prize for literature with a medical theme. The winning book will be announced on the evening of 9 November 2010 at: http://www.wellcomebookprize.org
Thousands of people could be pushed into poverty by changes to incapacity benefit, a charity has warned.
But Iain Duncan Smith, Work and Pensions Secretary, says his reforms could be the biggest change to the welfare state since it was founded.
Disability Alliance has said up to a million people with long term sickness or disability could be affected.
The government says getting people back into work is a priority, but there would always be a safety net.
Meanwhile Douglas Alexander, the shadow work and pensions secretary, has said that Labour could support testing the availability for work of incapacity benefit claimants.
Under the plans, claimants face a new 12-month cap on their benefits, if ruled able to work. People who cannot work, for example the terminally ill, would be given support with no time limit.
Mr Duncan Smith, in an interview with the Daily Telegraph, said his reforms – which are expected to be outlined in a White Paper next week – were “the biggest change since Beveridge introduced the welfare system”.
He plans to introduce a simplified benefits system, where as many as 30 different schemes are replaced with a single universal credit.
It is changes to Housing Benefit which are among the most controversial, though. Mr Alexander, in comments given to the Guardian, said Labour “could consider” a proposal to reduce housing benefit payments, if the changes were phased in and reduced in scope.
He said housing benefit had been used to take too much of the strain “for generation-long failures in the housing market, principally the the lack of affordable homes to rent and buy”.
Rise In Afghanistan Limb Loss
The Ministry of Defence has nearly tripled the number of rehabilitation beds available for severely wounded soldiers from Afghanistan to accommodate a sharp rise in the number of soldiers who have lost one or more limbs in the conflict.
The military’s Headley Court rehabilitation centre, near Epsom, Surrey, recently opened a second new 30-bed extension, expanding its total capacity to 96, up from 36 beds in 2007.
Staff numbers have also risen in line with the increase in severely injured soldiers who require long-term, specialist support, and the in-house prosthetics team has doubled in size over the past year in response to the surge in demand for new limbs.
More service personnel lost limbs in explosions in Afghanistan in the first nine months of this year than the total figure for 2009, according to MoD data released earlier this week. A total of 58 had undergone amputations as a result of injuries sustained in Afghanistan by the end of September, compared with 55 for 2009, according to Defence Analytical Services and Advice statistics. Military doctors are treating rising numbers of double and triple amputees.
The rise in critically injured casualties is partly the result of improved frontline medical care and enhanced evacuation arrangements, which has meant that there are many more “unexpected survivors” after explosions in Afghanistan. Until 2008, when staff at Headley Court began working with their first triple amputee, no one who had lost three limbs during fighting had lived.
Staff estimate that there are now about 15 personnel who have had triple amputations. The rehabilitation process for soldiers who have lost several limbs takes much longer, and treatment at Headley Court can stretch over several years, with patients spending a month in the centre, followed by a month at home.
Blesma (the British Limbless Ex Service Men’s Association) estimates that at least 48 people have lost two limbs in Afghanistan. “We have a painful number of these,” Headley Court’s commanding officer, Colonel Jerry Tuck, of the Royal Army Medical Corps, said. “If you put more people out in the field, you get more casualties.”
Staff at the centre are refining their methods for caring for soldiers with far more severe injuries than they have previously worked with, Tuck said. “The admission numbers are going up because the patients are more complex and they are coming back more frequently, that’s a definite.”
A surge in Afghanistan earlier this year put unprecedented pressure on medical services both at the intensive care unit at Selly Oak hospital in Birmingham, and at Headley Court. New facilities have been opened in both centres in recent months. “We just opened a new ward over the road. It is not in the ideal place but it’s in the place where we could build fastest,” Tuck said.
Joe Townsend, 22, a marine whose legs were blown off when he stepped on an improvised explosive device while on patrol in Helmand province in 2008, is still receiving treatment at Headley Court.
“When I got here first there was nowhere near as many in the same situation as now. It’s crap but that is how it is. There is a lot more use of IEDs now than before and the lads are treading on them more often,” he said.
Jerome Church, general secretary of Blesma, said: “It’s possible that the enemy’s bomb technology has improved, but medical intervention and trauma management is improving in leaps and bounds.
“People are surviving now who perhaps even as little as a year ago wouldn’t have survived.”
JustGiving Page Of The Week: Katy Brow
I was very sad to read the story of Candice Roberts, which I featured here yesterday. After some Googling, I discovered that Candice’s friend, Katy Brow, will be doing a skydive on November 27th in Candice’s memory, and to raise money for the Gullain-Barre Syndrome Support Group. I thought it was only appropriate to make hers this week’s Same Difference JustGiving page of the week. Good luck Katy, my thoughts are with you.
A Review Of Reasons To Be Cheerful
BBC Ouch recently went to see Reasons To Be Cheerful, the musical based on the life of DisAbled musician Ian Dury. Their review is here for anyone who is interested.
Candice Roberts
A young woman who complained of ‘pins and needles’ died three weeks later of a rare disease that paralyses the entire body.
Candice Marie Roberts, 26, was struck down with Guillain-Barre syndrome and died on her birthday at Warrington Hospital’s intensive care unit in Cheshire.
The trainee teacher had complained about feeling unwell and was struggling to walk.
She was discharged from hospital after a number of tests but returned days later when she started to become paralysed.
Her mother Karen, 51, said: ‘She was scared. She couldn’t speak and she couldn’t eat. We were struggling to communicate with her.
‘She just lay there like someone that you would see on TV.
‘Guillain-Barre syndrome is the most evil virus I have ever encountered.’
The syndrome affects about 1,500 people in the UK every year but most patients make a full recovery within a few weeks or months. However, it can kill in rare cases.
Candice’s family thought they had been thrown a lifeline when she started to get movement again in her arms but she started to struggle to breathe and suffered a cardiac arrest on August 17.
She was sedated due to a huge swell on her brain and on her birthday she was taken off the sedation but later died on August 23.
Miss Roberts had been enrolled on a PGCE course for September.
Her mother said: ‘We waited for her to live but on her birthday she chose not to.
‘It was 11.30pm and me, Stephen, her dad, her sister Cheryl and Andrew, her brother-in-law had waited for her all day.
‘It was like she was still there but was making her mind up. I never thought she would die even on the day. I just thought she would be coming home.
‘I am still in shock. She was young and we didn’t think she was a risk. The sums just don’t add up.’
Before becoming ill. Candice signed herself up to be an organ donor.
The 26-year-old, a musical theatre graduate, had showcased The Flower Whose Essence Is Dead, a performance she co-wrote, at the Edinburgh Fringe Festival in 2006 and worked with a touring theatre company in Chorley.
Her mother said: ‘We adore talking about her. She just used to ponder over things and once she ran in and said to me that she thought she had run over Stuart Little after running over a mouse.
‘She was still in touch with her childhood. She never wanted to grow up. She was the funniest person. I can guarantee that if you stopped someone in the street who knew her they would say how special she was. She was stunning.
‘It is really easy to talk about her. It makes me glow because you feel like she is with you.’
Karen, Stephen and the family are raising awareness of the illness and fundraising for research into Guillain-Barre syndrome.
They plan to keep Candice’s memory alive by offering performing arts workshops to young children in their local area.
Arrests After Blind Man Attacked In Dorset
Two people have been arrested after a blind man was attacked and left with a broken jaw at a Dorset railway station.
Peter Bartlett, 30, was walking home from work when he accidentally bumped into someone at Dorchester South station on 15 October.
He apologised, but was pushed in the back and fell to the floor.
A 23-year-old man, from East Lulworth, and a 17-year-old boy, from Bovington, were arrested on suspicion of causing grievous bodily harm.
They were later released on police bail until 12 January pending further inquiries.
Mr Bartlett is registered as blind after losing his central vision 10 years ago.
He said he did not know if his attacker knew he was blind, as he does not walk with a stick.
He told the BBC the assault had left him worried and scared every time he left his house in Dorchester.
Claire Allen
Dr Allen, 35, a scientist, suffers from bouts of ‘cataplexy’, a rare symptom of narcolepsy, triggered by strong emotions – such as fear, surprise or laughter.
The attacks cause her to lose control of her body and she collapses into a deep sleep – although she remains conscious throughout.
Each collapse lasts between 30 seconds to five minutes and at its worst Claire can endure up to 100 attacks each day.
A “surprise” as simple as a chair in a room having moved to a different place or giggling at a shared joke could spark an attack and leave her helpless on the floor.
But Claire has found a new lease of life and now only suffers several attacks every month thanks to Xyrem, a new drug developed to help narcoleptics.
Claire, from Cambridge, described how she first loses her speech and vision before her body buckles – but she remains completely “awake”.
She said: “The attacks are caused by any emotional surprise or shock but laughter is definitely the strongest trigger.
“The very first symptoms were my head nodding like a child trying to stay awake and after six months I was having full collapses where my body would go from under me.
“A few years ago I stopped all my medications for a trial and I discovered the true extent of my symptoms – around 100 collapses a day.
“I find that they happen more often during social contact with other people, perhaps because I’m more self-conscious.
“There is no pain at all, but my speech will go first so I can’t communicate what is happening, followed by my vision and then my body crumples beneath me.
“It doesn’t feel any different to being awake, except that I can’t see or move at all as I’m in a total state of paralysis.
“It’s very odd for people around me to see me go down and then come round in a few minutes and be absolutely fine.”
Narcolepsy causes severe disruption to sleep patterns and Claire, who works as a research scientist with the British Antarctic Survey, wakes up around 20 to 30 times each night.
But the new drug Xyrem puts Claire into a deep sleep for three-and-a-half hours so she must take a second dose in the middle of the the night to get a full seven hours sleep.
She said: “For the last five years I hadn’t slept for more than an hour at a time so the first time I slept for more than three hours it was incredible.
“All of the things that your body normally does at night – like repairing your skin and your nails and hair growing – just weren’t happening for me.
“Now I am much better at managing my lifestyle and getting plenty of rest to cut down on the cataplexic attacks.
“Many people go undiagnosed for many years. having only half of my symptoms could have a devastating effect on someone’s life.”
Researchers have found that narcolepsy may be caused by an irregularity to the brain cells which control the sleep hormone hypocretin.
An estimated 25,000 people in the UK suffer from narcolepsy but many remain undiagnosed due to the varying nature of the symptoms.
Dr John Shneerson, an expert at Papworth Hospital’s Sleep Centre in Cambridge, said that narcoleptics can wait for more than a decade for diagnosis.
He said: “Quality of life can be badly hit if untreated. Their studies suffer. They avoid driving. They are afraid to look after young children on their own and take baths.
“They don’t get into relationships, get promoted or do physical exercise.
“A great many lives would be improved if narcolepsy were better recognised. People are surprised by how well it’s possible to manage.
Dr Allen said she was forced to stop driving five-and-a-half years ago after she was diagnosed with narcolepsy.
She added that a new type of medication which has allowed her to sleep normally at night has also improved the condition of her hair and nails.
She said: “The doctor told me that narcolepsy can dramatically slow down hair and nail growth because your body repairs them during sleep.
“Since I have been sleeping through the night my hair is in much better condition and I have been able to grow my nails.”
‘Autism Gene’ May Offer Clue To Condition, Say Scientists
Differences in the brain structure of people carrying an “autism gene” may offer clues to how the condition develops, say US scientists.
Scans revealed children carrying the gene variant appeared to have more nerve cell “connections” within the frontal lobe.
They had fewer connections between this and the rest of the brain, reported Science Translational Medicine journal.
Brain research has just begun to reveal autism’s roots, a UK expert said.
One-third of the population carry the CNTNAP2 gene variant, so it does not guarantee that autism will develop, but just slightly increases the risk.
Different pathways
However, scientists at the University of California in Los Angeles believe it may influence the way the brain is “wired”.
They used functional magnetic resonance imaging (fMRI) to look for communication between different brain regions, and to measure the strength of these connections.
They scanned the brains of 32 children as they performed learning-related tasks – half had autism, and half did not.
Regardless of their diagnosis, those carrying the CNTNAP2 variant had differences in the connections within the frontal lobe of the brain itself and between the frontal lobe and the rest of the brain.
Dr Ashley Scott-Van Zeeland, who led the research, said: “The front of the brain appears to talk mostly to itself – it doesn’t communicate as much with other parts of the brain and lacks long-range connections to the back of the brain.”
The researchers also spotted differences in the “wiring” between the frontal lobe and the left and right sides of the brain.
In children with the version of the gene not linked to autism risk, the pathways were linked more strongly to the left side of the brain.
In those with the “risk variant”, the pathways were different, linking the lobe strongly to both sides of the brain.
This, said the researchers, could explain why the gene variant had been linked to children who are slow in starting to talk.
Dr Scott-Van Zeeland said that if the gene variant did predict language problems, then it might be possible to design therapies which helped to “rebalance” the brain and encourage normal development.
Professor Margaret Esiri, a neuroscientist from Oxford University, said that researchers had so far “barely scratched the surface” of understanding the interplay between genes and brain development.
Her own research closely analyses a scarce supply of donated brains from both autistic and non-autistic adults and children to look for differences in structure and function.
She said: “If you understand these subtle differences, there may be ways of ‘tweaking’ them earlier in life, and bringing them back into a normal trajectory of development. Of course, this would be many years away.”
Carol Povey, from the National Autistic Society, said the study was interesting because it began to link genes thought to be involved in autism to actual changes in brain function.
She said: “The causes of autism are as yet unknown, but we do know there are likely to be many factors involved, so we hope this will contribute to our understanding of this complex condition.”
Mother To Quiz Council Official Over Son’s Death In Respite Care
The mother of a disabled boy is to meet the head of Doncaster children’s services to ask how her son died during a respite care break.
Seven-year-old Warren Jobling suffered from a rare genetic condition and died in April 2008.
A Serious Case Review into the way he died found he had a history of cardiac arrest and could have died at any time.
His parents dispute that finding and want the full case review made public as “questions remain unanswered”.
‘Right answers’
Andrea Jobling will meet Chris Pratt, Doncaster Council’s Director of the Children and Young People’s Service, to ask for more details about the investigation.
“There’s nothing in the Serious Case Review that says where Warren was sleeping or where he should have been sleeping.
“There are quite a lot of things that are missing out of the summary report,” she said.
Ahead of the meeting with Mrs Jobling on Wednesday, Chris Pratt said: “I would want to consider any further information the family feels the council should be aware of.”
The Joblings had earlier started legal action against the council over their son’s death, but this has now been dropped.
Mrs Jobling said the family still visited Warren’s grave on a daily basis.
She said they cannot move on until they get answers to their questions.
“I’m not going to give up even though I’m really stressed out all the time going over more paperwork.
“I want the closure so I want the right answers.”
The Buzz- New Website For Young People Who Can’t Hear
CP Risk Higher After IVF, Finds Study
Fertility problems in parents cannot explain why babies born through IVF treatment face a higher risk of cerebral palsy, say Danish scientists.
The University of Aarhus found babies of couples who struggled to conceive naturally had similar risks compared to those who conceived quickly.
But they found that the risk doubled in babies born with the help of IVF.
Other potential causes, such as the treatment itself, should be investigated, the scientists say.
UK experts said despite the low risk the issue needed to be taken seriously.
The safety of IVF and similar fertility treatments has been closely scrutinised since the first “test-tube baby” in the 1970s.
As the number of IVF babies rises, initial worries about developmental problems have faded, but there remain concerns over higher rates of cerebral palsy.
There are several possible reasons, including the increased risk of complications in multiple pregnancies, which until recently have been much more frequent in IVF pregnancies.
Doctors had also suspected that the underlying reasons for infertility might play a part, but the latest research casts doubt on that.
Problem
The team looked at a national database of medical information from thousands of pregnancies and births, the journal Human Reproduction reported.
They compared cerebral palsy rates in babies grouped depending on how long it took for their mothers to become pregnant after starting to try to conceive.
This length of time is used as a way of assessing fertility – taking more than a year to conceive might indicate some kind of problem, albeit one not severe enough to prevent pregnancy altogether.
When the “quick conceivers” were compared with those taking over a year, there was no significant difference in the rate of cerebral palsy.
However, a group of babies born after IVF or ICSI, in which sperm is directly injected into the egg, had approximately double the risk of cerebral palsy compared with those conceiving quickly.
The overall risk was not high – approximately one in 176 babies born – although this represents a significant number when set against the 12,000 babies born after IVF techniques each year in the UK.
Dr Jin Liang Zhu, who led the study, said: “Our research enabled us to examine whether untreated subfertility, measured by time to pregnancy, might be the reason for the higher risk of cerebral palsy after IVF/ICSI.
“Our results showed this was not the case because, even for couples who took a year or longer to conceive, there was no statistically significant increased risk.”
He said that parents should remember that the increased risk remained very low.
The other suspect in the raised cerebral palsy risk is twin pregnancies, which carry a higher rate of problems in both mother and baby, and frequently mean that babies are delivered early.
A recent study in Sweden suggested that the trend in recent years of putting just one embryo rather than two back into a woman as part of IVF was cutting the number of children born with cerebral palsy.
Professor Karl Nygren, one of the authors of that study, said that the extra risk “may have disappeared” in countries which transferred only a single embryo.
However, Professor Richard Fleming, from the Glasgow Centre for Reproductive Medicine, said it remained a problem.
“It’s pretty clear that the issue still has substance. Even though the risks are very low for individual babies, they are high enough to deserve further research.
“Single embryo transfer will improve matters, but not solve the problem entirely.”
Vision Chip Restores Sight To Man With RP
Tanzania Elects First Albino MP
An albino has been elected as an MP in Tanzania for the first time.
“This win is a victory not only for me but also for all the albinos in this country,” Salum Khalfani Bar’wani, from the opposition Cuf party, told the BBC.
Albinos have suffered widespread persecution in Tanzania, where witch doctors say magic potions made with albino body parts can bring good luck.
The government has been campaigning against the discrimination, and an albino MP was appointed two years ago.
But Al-Shymaa Kway-Geer was nominated by the president who is able to appoint 10 unelected members of parliament.
Over the past few years dozens of albinos have been killed in Tanzania, targets of body-snatchers, and the killings have spread to neighbouring Burundi.
In August a court in Tanzania sentenced a Kenyan to 17 years in jail on charges of trying to sell an albino person.
‘Joy’
Mr Bar’wani said he was grateful to the constituents in Lindi Urban, in the remote south-east of the country, for electing him.
“My joy has no end,” he told the BBC Swahili Service.
“The people of Lindi have used their wisdom and have appreciated clearly that albinos are capable.
“I am so touched that this is the first time in the electoral history of this country for an albino to be elected by the people in a popular contest to be their representative in parliament – and not through sympathy votes or decisions.”
He said his success also showed people in Lindi where tired of the leadership of the ruling CCM party.
So far five cabinet ministers from the ruling party have lost their seats to the opposition in the elections.
Incumbent President Jakaya Kikwete is expected to win the presidential poll, although he faces a strong challenge from former priest Willibrod Slaa and university professor Ibrahim Lipumba, among six opposition candidates.
On Monday, opposition supporters held protests in several parts of the country at the slow pace of announcing the result of Sunday’s general election.
European Holiday Breaks: The Best Destinations For Wheelchair Users
This is a guest post by Gowring’s Mobility.
Travelling as a disabled person can be stressful; particularly if you are not sure as to what level of accessibility your destination has in place. The following gives advice on a few of the best European destinations, all of which offer excellent facilities for wheelchair users to make your holiday what it should be; relaxing and fun.
Paris is a beautiful city with great architecture, museums and public spaces and also quite accessible for the wheelchair user. Look for the French Tourisme & Handicap label which certifies a certain standard of accessibility in those tourist attractions that display it. It covers four areas of disability: physical, visual, hearing impairment and mental disabilities. France’s tourism website should provide a list of accommodation and tourist attractions which bear the label.
The main art galleries and museums such as the Louvre, the Pompidou Centre, Musee d’Orsay and Musee du Quai Branly all provide excellent disabled access such as lifts, disabled toilets and wheelchair hire. A must see on a trip to Paris, the Eiffel Tower offers preferential queuing for disabled visitors and lift access up to the second floor where you can make use of the shops and restaurants. A separate lift will take you to the Jules Verne Restaurant but be sure to reserve the restaurant in advance.
It is always a good idea to take a document which proves your disability as it could give you and your fellow traveller free or reduced entry. A lot of museums will lend you a wheelchair and most will have some form of audio visual aids. The Cite des Sciences, the largest science museum in Europe is also accessible to wheelchair users, provides aids for those who are hearing and visually impaired, including induction loops and sign language interpreters. The Parc de la Villette is a beautiful park in the Canal St. Martin area of Paris which incorporates a contemporary arts centre, La Grande Halle. Most of the park is wheelchair accessible and there are bridges which cross the canal.
Another beautiful city with impressive disabled access is Barcelona, one of the most disabled friendly cities in Europe. Public transport is very accessible. About 80% of metro stations have lifts and at one end of the platform a raised section allows level access to the train. All buses in Barcelona are fully accessible with a kneeling automatic ramp and space dedicated for wheelchair use. Barcelona is also updating and improving access to automatic ticket machines in stations and improving signs and announcements for the hearing and visually impaired. By 2010 roughly 90% of Barcelona’s regional trains should be wheelchair accessible.
As with Paris, Barcelona has many tourist attractions including museums and galleries and the majority are wheelchair accessible. Spain’s tourism website provides comprehensive information as to what facilities are available at different attractions. One of best accessible museums is the Fundacio Miro where disabled visitors get reduced entry. The Fundacio Miro is in the Parc de Montjuic which should not pose any problems for access.
Berlin is another city which has dedicated itself to improving access for disabled people. Railway stations and buses come with barrier-free access following a policy of upgrading over the last few years and the vast majority of public buildings will have wheelchair accessible facilities.
Cathy John Explains What MS Looks Like
Not being gay, I presumed I’d never have a “coming out” experience. How wrong I was. On being diagnosed with relapsing/remitting MS in February, I discovered a coming-out process is included in the package. My symptoms remain mostly invisible to others: pins and needles in the hands, blurred vision, fatigue, muscle weakness and imbalance (I often give a brilliant impression of being drunk when I am not). Prior to being diagnosed the symptoms seemed so negligible, I was convinced I was a raving hypochondriac.
With relapsing/remitting MS, symptoms come and go, so if your disease is slow to progress, with infrequent relapses and low levels of disability, you can remain silent for years, even decades. I have not “come out of the closet” with many people. Until now.
After diagnosis I was advised by medical professionals not to rush into telling people about my condition. There is no legal obligation and they have seen many go through difficult situations in the workplace. And it can be challenging to deal with others’ negative reactions and emotions when you are still grappling with yours. I was also told many people in the public eye with MS are not open about it. I was dumbstruck; how are perceptions of the disease to change if well-known figures living with it remain “closeted” and regular folk keep schtum too?
Part of the problem is that the most famous MS sufferer in the UK remains Jacqueline du Pré. Her case was tragic, because as a cellist her career would have been damaged by the mildest symptoms of the disease, let alone the aggressive form that killed her. But for every du Pré there are thousands living and working with MS, carrying on their lives with some modifications.
Recently, at an enlightening MS day run by my hospital for newly diagnosed patients, a consultant showed a slide with images of prominent people associated with MS. Though well-intentioned, I found it a meagre and depressing assortment of people. My spirits rose when for a moment I thought JK Rowling had created seven best-selling instalments of Harry Potter despite sharing my debilitating neurological condition. It transpires not; her mother died of the disease. The slide also featured an Osmond brother, “the boring one”, as someone put it. The only other “famous” people mustered were a rugby player I had never heard of and, of course, Jackie du Pré. The slide suggested to me that those with MS, and most people with disabilities, live in the shadows. I am desperate to see someone in the limelight, doing their thing the best they can, despite their disability.
One person who has managed this with MS is someone whose work I have always admired. American writer Joan Didion wrote briefly about her diagnosis in an appraisal of the chaotic close of the 1960s, The White Album. She nails the feeling of being diagnosed in two paragraphs: “I had ? a sharp apprehension of what it was like to open the door to the stranger and find that the stranger did indeed have the knife.” Despite these arresting passages Didion has remained silent on the disease since. For me, discovering Didion has MS was like being a football fan and finding David Beckham has the condition and is still kicking a ball around for AC Milan. OK, Didion is a fairly reclusive writer, career manageable with a remitting disease, and has a very benign form of MS (she is still walking, talking and working as an advanced septuagenarian). But suddenly I felt I could hope again, not just to be an old lady, but to have a long, successful career.
For those of us with the condition, the scarcity of people with MS who are “out of the closet” means it is difficult to imagine an active future life. As if to affirm this, a taxi driver told me, unprovoked by any confession of MS on my part, that his friend with the disease had moved out of London and, due to “shame” about her disability, refused to see anyone. Forget living in the shadows with the disease; being without your friends when you need their support most must be like living in the dark.
Another problem with the lack of “out” role models is that it does nothing to counter the widespread misconception that the disease is swiftly incapacitating, leading to premature death. In the US drama series The West Wing, President Bartlet’s failure to “come out” with MS during his first presidential campaign is a major storyline. When his staffers are preparing to disclose his disease, a poll reveals 74 per cent of the public believe MS is fatal. I think the scriptwriters did their homework on that figure. Such misperceptions make a pretty good reason to be tight-lipped – anticipated death is not so hot for your career. Fear of the disease eclipsing their professional reputations and making it difficult to be promoted or recruited, makes people hide their MS for as long as possible. This often then forces people to come out when their condition is rapidly deteriorating, reinforcing negative misconceptions about MS’s aggression. Yet even if employers do have a reasonable understanding of MS they might shy away from a candidate who needs modifications to be made to the workplace, time off sick due to relapses or treatment, and whose fatigue may force them to eventually work part-time.
However, it is illegal for employers to discriminate in this way. I hope that soon more people with MS might be encouraged to seek the protection, resources and human compassion that also come with disclosure. Legal security comes in the form of the Equality Act 2010 (previously the Disability Discrimination Act). The act promotes the rights of those with disabilities, guarding against discrimination during recruitment and ensuring employers make reasonable adjustments to enable disabled people to keep working.
So after my diagnosis, a period on sick leave and a very useful discussion with an advisor on the Equality and Human Rights Commission helpline, I decided to tell my managers and HR team about my MS. A hefty part of the “coming out” process, it was a great experience. I felt in control of the disclosure, supported by my colleagues, and the resources I needed to still do my job effectively were provided with help from the Access to Work scheme.
But this article is a leap of faith. Prior to publication I faced a dilemma: should I publish this under a pen name, heeding the advice of many and defending myself against discrimination lurking in murky places that the Equality Act 2010 can’t oversee; or should I well and truly “come out”, publish and be, potentially, damned? The danger is in losing control of who knows and who doesn’t. In an age of instantaneous information, it would be common for potential employers, even potential boyfriends, to drop my name into Google and find this article. I fear the knowledge of my MS would overpower their perception of me and colour their decision of whether to get to know me better.
After much deliberation (and even concocting some pseudonyms), I decided to publish this and my new blog under my real name. It would be the height of hypocrisy, not to mention cowardly, to publish this article while not disclosing my identity. I decided that “coming out” wholeheartedly would enable more people to learn that having MS was not the end of someone’s life. I decided to trust that I wouldn’t want to work in a place where there wasn’t an open-minded attitude to disability and wouldn’t date someone who would let my MS stop him from knowing me better. I decided it is better to trust than fear. So if you have just googled me and are reading this online, we can still get to know each other.
“Coming out” with MS can be a little bleak. Few trailblazing icons, no flags to wave, no badges to wear with pride. Despite the fact that it inevitably becomes part of your self-definition, there are no markers of a positive collective identity to adopt, few inspiring leaders to follow through difficult terrain. Maybe it’s time some of those in the public eye living with MS step out of the closet. But perhaps more importantly all patients with the condition should be encouraged to be open about their disease and receive the support they deserve. For, as I heard the London Gay Men’s Chorus emphatically sing last Saturday night: “Life’s not worth a damn ’til you can say, hey world, I am what I am.”
Cathy John’s blog can be found at www.lickingthehoney.org
Blind Great Grandmother Sees Great Grandson For First Time
A blind British pensioner who flew to China for pioneering treatment has got her eyesight back – and has arrived home to see her great grandson for the first time.
Dorothy Leach, 76 from Hardwicke, can make out faces, shapes and colours for the first time in more than a year after receiving stem-cell treatment in China.
She raised £16,000 in fundraising for the operation and travelled to China in September.
‘When I got back to Heathrow Airport last Wednesday I could see such a lot. It was unbelievable,’ said Dorothy.
‘The other day I saw a crow on the fence in my garden and had to check with people that I could actually see it but I did see it. It is amazing.
‘The doctors said it could take another six months to a year before my sight gets as good as it will be, but it is much better already. It was definitely worth it.’
Dorothy’s plight began when she woke up one morning in February last year to discover she had gone blind.
She was diagnosed with giant cell arteritis, an inflammatory disease of blood vessels.
Doctors in the UK said they could not restore her sight, but the Chinese hospital said it offered pioneering stem cell treatment that could restore her vision.
Stem cells are the very early cells that can develop into almost all other types of cell and tissue.
Dorothy went through a course of daily wave therapy and acupuncture, with weekly stem cell injections, for 43 days before arriving back home to her husband Percival in Springfield, Hardwicke.
Dorothy’s main aim is to see her two-year-old great grandson Chris this Christmas.
The mother-of-four, grandmother-of-seven and great-grandmother of two, said: ‘I really looking forward to being able to see Chris.
‘As soon as his parents can get here to visit I am hoping to see him. They live on the army camp so it might be a little while, but I’m keeping my fingers crossed.’
Well wishers had organised parachute jumps, bingo evenings and fun days to raise the money to send Dorothy on her trip.
Dorothy added: ‘I am so pleased that everyone helped to raise this money. It is so wonderful that everybody did it for me. I really couldn’t have done it without them.’
Her daughter Vicky, who kept a blog on the experience, said she and her mother went to Qingdao Hospital where her treatment was overseen by Dr Tony Lao.
‘The main treatment was a weekly injection of stem cell fluid taken from umbilical cords at a maternity centre in Beijing and flown to Qingdao,’ she said.
‘Mum had to have two injections of the fluid into her right eye without anaesthetic, one of which was very painful. There were also six injections of fluid into her hand.
‘Every day she had wave therapy, which involves electrical impulses to stimulate the parts of the brain involved. And she had acupuncture every day with one needle in the top of her head, two in her wrists, two in her knees and two in her ankles.
‘The hospital has become known throughout the world for this treatment that it has been performing since 2004. We met other patients there who had flown in from Brazil, Canada and America for it.
‘Mum has good days and bad days with her sight now. She can see shapes and bright lights and on some days much more than that. One day when we were out there she was able to see the writing on a sign quite clearly.
‘The doctor said she should hopefully get steadily better over the next six to 12 months. After a year her sight will probably be as good as it’s going to get.’
Autistic Boy’s ‘Cage’ Removed By Council
An enclosed play area for a teenage pupil with learning difficulties and autism, which was described as a “cage” by his MSP, has been removed.
The 18-year-old’s parents raised funds for a safe play area at the Nicolson Institute in Stornoway, on Lewis.
However, SNP MSP Alasdair Allan said they were “deeply upset” to see what had been constructed.
Western Isles Council – Comhairle nan Eilean Siar – said it wanted to apologise unreservedly to the family.
Norman MacDonald, vice chairman of the policy and resources committee, said the enclosure was the result of a communication breakdown between staff and the supplier.
Mr Allan said the pupil’s parents were full of praise for his teachers.
However, they had been unhappy that for the past five years he had spent almost six hours a day inside temporary accommodation with a teacher.
The parents raised funds to help cover the costs of a safe outdoor area, which they hoped would include decking and play equipment.
‘Old barriers’
Mr Allan said: “Some months ago, the parents were deeply upset to see what had been constructed.
“It was what they describe as a small ‘cage’ sitting on the grass, constructed from old barriers and fencing of the type used on building sites.
“I believe that ‘cage’ is a reasonable description, and that this represents a failure on the part of the council to consider this young man’s needs.”
He added: “This is an incident which has caused very understandable offence to this family and raises questions about the provision in the Western Isles for children in a similar situation in future. I have raised this matter with the council by letter and await a response.”
The enclosure was taken down over the past two weeks.
‘Entirely inappropriate’
The Nicolson Institute is the largest school in the Western Isles, with about 1,000 pupils.
Senior councillor Mr MacDonald said an appropriate play area would now be built at the secondary.
He said: “I wish to apologise unreservedly on behalf of the council to the family of the boy involved.
“I think it is very clear to us and was very clear to the comhairle that the provision that was put in place was entirely inappropriate for the use to which it was going to be put.”
Mr MacDonald said the specifications of what was needed had not been made clear to the supplier.
Tips For A Wheelchair Accessible Wedding
BBC Ouch! regular Liz Carr and her partner, Jo, are celebrating their civil partnership today. To mark the occasion, Liz wrote a very good article for Ouch, full of tips on how to have a wheelchair accessible wedding day. So, if you’re a wheelchair user planning a wedding, do take a look! And, if you’re a wheelchair user who’s already married, do let us know, in the comments below, what you did to make your special day wheelchair accessible.
Jane Cordell Loses Her Case Against The Foreign Office
The case of Jane Cordell really upset me when I first read about it. My thoughts and feelings about the case are explained in detail here and here, so I won’t repeat myself. However, I will say that I am even more upset this morning, to read that Mrs Cordell has lost her case against the Foreign Office.
Mrs Cordell, through the actions she has taken in this case, and through what I have read about her background, is an inspiration to me, and, in my opinion, should be an inspiration to anyone with any disability. She has my best wishes in whatever she now decides to do in her career and in her life.
‘Care Credits’
Have you heard of the ‘care credit’ system yet, readers? Any thoughts?
I think this idea raises a lot of questions that the Government needs to answer before it can be considered. What will be counted as ‘having enough credit?’ What if someone becomes disabled before they’ve collected enough credit for their own old age? What if someone runs out of credit and still needs care? And what about that most valuable group of people- our unpaid carers- parents, family members, partners? Will they get ‘care credits’ too? If not, who will care for them in their old age, if their only child is disabled, or their non-disabled children are living far away?
Family Gets £515K Interim Compensation Payment After Scan Doesn’t Detect Spina Bifida
A mother who had a disabled baby after antenatal scans at Bedford hospital failed to pick up that he had spina bifida has won a £515,000 pay-out.
NHS lawyers admitted at the High Court that scans should have pinpointed her son’s condition.
Bedford Hospital NHS Trust also conceded that, had the mother learnt the truth, “she would have had a termination if properly counselled”.
The NHS trust admitted breach of duty and has agreed an interim payment.
‘Complex issues’
The boy, who cannot be identified, is now five years old and the £515,000 payment will enable his mother to buy a new home specially adapted for her son’s needs.
That will only be a fraction of the NHS trust’s final damages bill, which will have to be assessed by a judge in the future if final settlement terms are not agreed before then.
Jalil Asif QC, for the NHS trust, told Mrs Justice Swift that “complex issues” still had to be resolved,
He said it was the trust’s case that it could not be held legally responsible for birth defects, other than spina bifida, which could not have been detected while the boy was still in his mother’s womb.
The judge, sitting at London’s High Court, gave directions for exchange of medical evidence, but the court heard the case is unlikely to come to a full hearing until 2012 at the earliest.
JustGiving Page Of The Week: Andrew Farrow
Andrew Farrow has just started a very interesting challenge- to row 100km to raise money for spinal cord injury charity The Back-Up Trust. In the process, he’ll be taking part in research carried out by my old uni. That’s why his is this week’s Same Difference JustGiving Page Of The Week. Good luck Andrew!
BBC News – AMs say railway disability access ‘unacceptable’
A report from a group of assembly members found more than a third of railway stations in Wales have no access to platforms for wheelchair users.
They said it was “unacceptable” that around half of Wales’ railway stations are not fully accessible to disabled people.
Simon Green, the chairman of the Bridgend Coalition of Disabled People, explains why the lack of access is such a problem.
Vodpod videos no longer available.
Machine That Allows Computer Games To Be Played By Thoughts Could Help Locked In People
The device has enabled people to move a cursor around a screen and also fade and brighten images using just their brain.
The instructions are enough to play a simple computer game and could eventually allow brain damaged individuals to communicate with the outside world.
The team at the University of California and California Institute of Technology recruited 12 epilepsy patients who because of their illness had sensors embedded into their brain to monitor nerve activity.
They then set about training the volunteers to “exert conscious control” on individual nerve endings or neurons within the brain so that they could be switched on and off using just their thoughts.
By picking up these “thoughts” using the sensors they could be converted into commands for a computer screen.
Professor Christof Koch, of the California Institute of Technology, said that the study showed “individuals can rapidly, consciously, and voluntarily control neurons deep inside their head.”
The team, that included Moran Cerf, a PHD student, looked at the medial temporal lobe—a region on the left hand side of the brain that plays a major role in human memory and emotion.
Prior to recording the activity, the volunteers were interviewed to find their interests and 100 images created around them.
These were then tested to find the four that showed the strongest correlation response in the brain.
These could then be used to control the movement of a cursor or to fade in and out different images.
They also made the participants think of one image, while looking at another to see how the thoughts in the brain competed.
They found that people were able to exhibit conscious control over their unconscious thoughts.
“The patients clearly found this task to be incredibly fun as they started to feel that they control things in the environment purely with their thought,” said Mr Cerf.
“They were highly enthusiastic to try new things and see the boundaries of ‘thoughts’ that still allow them to activate things in the environment.”
The work is published in Nature.
BBC News – Mr Tumble gives crash course in Makaton signing
Vodpod videos no longer available.
Disabled Man’s Killer Jailed
A man has been jailed for life for murdering a 62-year-old disabled man in his Scarborough home.
Alan Atkin suffered severe injuries to his face, head and body in the attack by 29-year-old Ricky Gelardo.
Gelardo, of Lismore Road, was convicted at Leeds Crown Court and ordered to spend at least 17 years in prison.
A police investigation was started after Mr Atkin, who used a wheelchair, was discovered in his Swan Hill Road home on 21 April.
North Yorkshire Police said Mr Atkin was a well-known figure in Scarborough and regularly socialised in the town centre.
Det Ch Insp Alan Carey of North Yorkshire Police said: “Ricky Gelardo carried out a brutal and sustained attack on Alan Atkin which caused his death.
“It is very hard to comprehend how anyone could inflict such violence on another person, let alone on a defenceless, wheelchair-bound man.”
He added that Gelardo, who is from Darlington but had been living in Scarborough in the weeks before the incident, had attacked his victim shortly after meeting him for the first time.
“For no apparent reason, Gelardo appears to have taken exception to something Mr Atkin said and subjected him to a violent attack before leaving him to die on his living room floor.”
In a statement released through police, Mr Atkin’s children, Lana and Karl Atkin, said: “We are very happy and relieved that our father’s killer has been brought to justice. The way his life way taken away was horrific and we just hope he can now rest in peace.”
Haley Sadler In The Sun
Same Difference featured Haley Sadler, 22, and her Facebook group for others who can’t hear, last July after her story was published in Pick Me Up magazine.
Now, I’m pleased to be able to link to an article about Haley and her group in today’s Sun. Haley continues to be a great campaigner for others who share her DisAbility, and an inspiration to people with all disabilities. She has my best wishes, as always.
A Review Of NDEX
Emma at the BBC Ouch! Blog has a review of NDEX, the disability exhibition that takes place in the North of England. If you went to NDEX this year and you have anything to add about the event, please do share your thoughts in the comments below.
Half Of Wales Railway Stations Not Accessible
More than half of Wales’ rail stations are not fully accessible to disabled people, according to a report.
The Welsh assembly equality of opportunity committee issued the findings, highlighting “significant shortcomings”, and calling for action.
Arriva Trains Wales, which runs most of Wales’ stations, said it was committed to improving access.
Joseph Carter, policy manager for the MS Society in Wales, said disabled people faced a “second class system”.
He said: “Most disabled passengers as with any passengers want freedom to get on the train and go wherever they want rather than at the moment where theoretically there could be assistance if they ring ahead but where’s the spontaneity there.
“You’re creating a second class system where people who happen to be disabled can’t have the same freedoms the rest of us enjoy.”
Disabled people from across Wales gave written evidence to the committee, sharing their experiences.
The report from the cross-party group found issues including footbridge-only access to platforms, unreliable lifts, large gaps between trains and platforms and understaffing resulting in more than half of stations not being fully accessible.
It claims only 16% of stations have part access to the platforms for wheelchair users, and 34% no access.
The committee received examples of the difficulties encountered by disabled rail passengers.
Members of the Mid and West Wales ME Group said Machynlleth station posed a particular problem due to the large number of steps there to change platforms.
The committee heard of similar problems at Wrexham, Hawarden, Port Talbot, Neath and Chepstow.
“The current level of accessibility to railway stations in Wales is unacceptable and while we welcome the improvements that have taken place, we feel that much more could, and should, be done,” said committee chair, Ann Jones, Clwyd West AM.
The report acknowledges that the assembly government does not have full control over the rail infrastructure in Wales, due to it being owned by Network Rail, operated by Arriva Trains Wales and controlled by the UK Government’s Department for Transport.
However, it calls on ministers to use the powers under the Railways Act 2005 to finance further improvement initiatives and to influence the UK Government when it sets the next round of targets for Network Rail.
Kevin Fitzpatrick, a former disability rights commissioner for Wales, said he was not surprised by the report’s findings.
He said: “No toilets on the train, very few toilets facilities in stations, very often not an opportunity to get some help or support at the station, no access to the station so for a very long time this has been a big issue and it’s no that wonder disabled people don’t travel by train.
“Would you take the chance of getting on a train at one point at a station that was accessible to arrive at another without knowing whether it was accesible or that support would be there?”
A spokesman for Arriva Trains Wales said: “When planning improvements to premises and trains, Arriva Trains Wales takes the needs and aspirations of customers with disabilities into consideration and is currently in the process of improving a number of stations around the UK in order to enhance the passenger journey experience.
“Improving accessibility is not an easy task as many of the UK’s stations were built in the Victorian era and were not designed to meet the needs of passengers with reduced mobility.
The spokesman added they has made significant capital investment in improvements to stations and rolling stock against a limited franchise commitment and worked with other bodies to deliver the best possible service under its current agreement.
A Network Rail spokesperson said: “We are currently working with the industry to invest around £85m to improve stations in Wales by 2014, and part of that includes funding from Department for Transport to improve disabled access.
“Stations in Prestatyn, Wrexham, Bridgend and Severn Tunnel Junction are among those set to benefit. We share the aspiration to make even more railway stations accessible and we welcome further support from the government to help us achieve that.”
Disabled rail passengers can get help planning their journey via the Journey Care Helpline on 0845 300 3005.
BendyGirl On BBC Radio Leeds
It’s BendyGirl again! This time, she was on BBC Radio Leeds earlier today, talking about- what else- the Spending Review- as well as the Jamie Merrett case. You can listen to her brilliant telephone interview on iPlayer here for a week, at 1:46.00. Well done BendyGirl!
Quoted In Disability Now
For those of you who don’t read Disability Now, I’ve been quoted in this month’s issue on my thoughts about Nadine Dorries’ recent comments about Twitter and DisAbled benefit claimants.
Of course this is not the same as having a full article published, but my thoughts and words are still in print, which is always exciting for a writer!
A Review Of Tormented Lives
I’m linking to this review of Rosa Monckton’s recent documentary Tormented Lives, for any of you who saw the programme, in case you’re interested.
Jeremy Clarkson Rapped By OfCom Over ‘Special Needs’ Comment
Hooray! This is just one small victory in a constant battle against disablism. It doesn’t look like Clarkson will be sacked by the BBC any time soon, unfortunately, but this OfCom ruling should definitely be celebrated by all those of us who fight disablism. Thank you OfCom!
Top Gear presenter Jeremy Clarkson has been criticised by media regulator Ofcom for describing a car as “special needs” on the BBC2 show.
Clarkson said the Ferrari F430 Speciale was “a bit wrong … that smiling front end … it looked like a simpleton … [it] should have been called the 430 Speciale Needs”.
The BBC said it regretted that the comments had caused offence to some viewers and removed the reference from a repeat of the show on BBC2 and on the iPlayer.
Ofcom, which received two complaints, said it took into account Top Gear’s “irreverent style and sometimes outspoken humour and studio banter”.
But the regulator said “discriminatory language of this nature has the potential to be very offensive to some viewers, as it could be seen to single out certain sections of society in a derogatory way because of their disability”.
“In Ofcom’s view, the comments made by Jeremy Clarkson in this instance were capable of causing offence. In particular, on this occasion he was clearly criticising the car’s physical appearance by directly comparing it to ‘a simpleton’ and saying it should have been called ‘430 Speciale Needs’,” the regulator added.
“In Ofcom’s opinion, while obviously intended as a joke and not aimed directly at an individual with learning difficulties, the comment could easily be understood as ridiculing people in society with a particular physical disability or learning difficulty.”
Ofcom said it considered the matter resolved after the BBC took “immediate steps” in response to viewers’ complaints to remove the comments from the repeat of the show and online.
Clarkson made the comments in the edition of the show broadcast at 9.30pm on 1 August this year.
“The BBC said that Clarkson’s intention in describing the car as ‘speciale needs’ and the front end of it as looking like a ‘simpleton’ was as a light-hearted reference to the look of the car (the front of which has the appearance of a broad smile) in contrast to a newer model, which was praised by Mr Clarkson. The BBC said that it was the car itself that was the subject of the fun being poked at and its owner, co-presenter James May,” said Ofcom in its ruling today.
“Ofcom also noted that the BBC accepted that the inclusion of the comments had caused some members of the audience offence. This was reflected in the fact that they had chosen to remove these comments from the repeat versions of the programme and from the version of the programme available on BBC iPlayer.
“Ofcom acknowledged that the BBC took immediate steps in response to complaints it received about the programme. In particular the BBC had voluntarily removed the comments from the iPlayer version of the programme and the repeat version broadcast several days later, and made the decision not to repeat the programme in its original format. It had also apologised for any offence caused by the comments, underlining that there was no intent to make fun of those with special needs.”
MS Patient Margaret Lynch Confronts Cameron And Clegg On Cuts
A 52-year-old Multiple Sclerosis sufferer from Derbyshire, Margaret Lynch, accused David Cameron and Nick Clegg of “picking on the weakest” by cutting benefits for the vulnerable.
The Prime Minister and Deputy Prime Minister met voters in a rare public appearance together at a secondary school in Nottinghamshire to explain the cuts which were announced in the Comprehensive Spending Review on Wednesday.
The pair had come under pressure from Margaret Lynch, a 52-year-old Multiple Sclerosis sufferer from Derbyshire, who accused them of “picking on the weakest” by cutting benefits for the vulnerable.
She said: “You are really picking on the weakest people in society and it is completely unfair how you have applied the budget cuts.”
Mr Clegg replied: “The package is much more balanced and more fair than is presently being alleged.”
You can watch a video of this incident by clicking the link above.
Parents Angry Over False Abuse Claims By Welsh Council
A couple are angry their autistic son spent eight months away from the family home while claims of physical abuse were investigated.
Henry Newbury, 65, and wife Sheila, have been reunited with son Henry, 40, and a council watchdog found “flaws” and delays in the investigation.
Mrs Newbury had been temporarily suspended as a care worker.
The public services ombudsman recommended a case review. Caerphilly Council said it would apologise.
OMBUDSMAN RECOMMENDATIONS
- Caerphilly Council should review the case again, focusing on family’s complaint
- The council discusses with police the adequacy of support to the protection of vulnerable adults (Pova) investigation process
- Caerphilly Council and partner local authorities who use Pova develop a protocol in the light of this case
Henry, who has the mental age of a five-year-old, needs round-the-clock care, his father, who works for an accountancy firm, explained.
Henry was placed in care in March 2009 after two allegations of abuse were made by workers at the day centre which he attended, neither of which were proven according to Mr Newbury.
After the second accusation that Henry appeared to have a black eye, the family were rung and told he was going to go to a care home.
Mr Newbury said the family protested their innocence over both accusations, that Henry repeatedly injures himself because of his disability, and that the alleged black eye was caused by an ethnic trait known as “panda” eye caused through a lack of sleep.
“I do not want another family to go through this. I am not blaming the people, of course things have to be investigated, but not in this way and for this length of time.
“How could we explain to our son what was going on? We could not tell him when he could come home. We did not know and we could not lie to him, no parent can lie to their child like that.”
During that time Henry Jr’s mother Sheila Newbury, 62, a community councillor in Caerphilly, was suspended from her care worker job for six months.
The allegation of physical abuse against a family member was investigated by police who found no case to answer.
Mrs Newbury said: “This ordeal was like losing someone. It was like a bereavement. I grieved for my son every day.
“I became ill because I was so sad. This was a false claim. I am a coummunity councillor and I was worred about the shame. It was like an awfulness. It was like a black cloud hanging over me.”
Mr Newbury later complained about the council’s response to allegations of abuse.
“Start Quote
As requested by the ombudsman, we will be apologising most sincerely to the family”
End Quote Spokesman Caerphilly Council
In particular, he was concerned that Henry was moved to a care home without a court order, about the adequacy and the length of time of the council’s Protection of Vulnerable Adults (Pova) investigation.
He was also concerned about the standard of communication with the family, and about the council’s response to letters from the family’s solicitor and AM.
The public services ombudsman partially upheld the complaints.
His report, seen by the BBC, found both investigations “flawed” in achieving best evidence and that Henry’s removal had a “serious impact” on the family.
The ombudsman suggested the family take up the issue of the delay in the inquiry with police, which appears to have been due to an officer on maternity leave, with the case resolved quickly when a new officer took over the case.
But he found communication by social workers with the family “mixed”, while Henry’s welfare appeared to have been “lost” in the investigation process.
He recommended that the council should apologise to the family for the failings he had identified, and also made some recommendations aimed at improving the council’s Pova process.
A Caerphilly Council spokesman said: “The council has been working closely with family…and we acklnowledge the timescale to resolve this situation has been protracted.
“It is important to note that ombudsman found we have not discriminated against the family, nor caused undue delays.
“However, as requested by the ombudsman, we will be apologising most sincerely to the family.”
Ben Clark
A Dorset swimmer partially paralysed in a diving accident is taking part in a sponsored swim to raise money for his wheelchair charity.
Ben Clark, 20, from Hamworthy, was hurt when he dived into a wave at Sandbanks, Poole, on 3 July.
He hit his head on a rock and broke his neck.
The lifeguard, who had hoped to swim in the 2012 Olympic Games, has now set his sights on the Paralympics. His family has organised the event on Saturday.
After the accident, surgeons at Southampton Hospital took bone from his hip to rebuild his spine.
Mr Clark is now recovering in the Duke of Cornwall spinal injuries unit at Salisbury District Hospital.
Despite initially being told it was unlikely he would ever move from the neck down again, he has regained some movement in his upper body and now swims again.
Mr Clark’s aunt Allyson Rogers described it as “freak accident” and said: “He simply dived into a wave to cool down and hit his head on a rock, completely shattering his C5 vertebra and fracturing C6 and C7.
“A split second, life-changing moment.”
Hospital pool record
Mr Clark has set up a charity, Chairs for Champions, to help fund specialist wheelchairs, for himself and others, to help increase fitness.
Ms Rogers added: “The progress he has made in just 16 weeks has been phenomenal and he is continuing to surprise the team at Salisbury looking after him.
“He continues to regain sense and some voluntary movement in his lower body and every day ends on a positive.
“Ben now has his sights set on swimming for Great Britain in the 2012 Paralympic Games – he already holds the unit record at Salisbury for 43 lengths in 20 minutes.”
About 200 people have already signed up for the sponsored swim at Dolphin Leisure Centre in Poole on Saturday evening.
Man’s Life Support Switched Off By Mistake, Causing Brain Damage
An agency nurse working for the NHS was filmed switching off her patient’s life support machine by mistake.
Tetraplegic Jamie Merrett, 37, had a bedside camera set up at his home in Wiltshire, after becoming concerned about the care he was receiving.
Within days, it captured the moment Violetta Aylward switched off the ventilator, leaving him brain-damaged.
Ambition 24hours, which supplied her, said it could not comment as an internal investigation was continuing.
A confidential report by Wiltshire social services into the incident – leaked to the BBC’s Inside Out programme – concluded the agency was fully aware it was required to supply a nurse with training in the use of a ventilator, but the company did not have adequate systems in place to check what training their staff had received.
Mr Merrett, from Devizes, has been cared for at home on a life-support machine since 2002 after being left paralysed from the neck downwards after a road accident.
Despite his disabilities, he was able to talk, use a wheelchair and operate a computer using voice-activated technology.
His sister Karren Reynolds said he had become increasingly worried about serious errors involving nurses operating his ventilator, but claimed that health bosses did not act on e-mails of concern which he sent them.
In January 2009, he arranged to have a camera installed in his room. A few days later, the ventilator was switched off.
After 21 minutes, the machine was eventually restarted by paramedics but by then Mr Merrett, from Devizes, had suffered serious brain damage.
Legal action
Ms Reynolds, who is considering legal action, said his level of understanding had dropped to that of a young child.
“His life is completely changed. He doesn’t have a life now,” she said.
“He has an existence but it’s nowhere near what it was before. He is very brain damaged compared to what he was before. He was a highly intelligent man and you could have long in-depth conversations with him and now it tends to be more simplistic.”
The solicitor acting for Mr Merrett, Seamus Edney of SJ Edney in Swindon, said: “In my experience, this is the worst case of negligence on the part of a nurse.
“No one has come forward to make any admission, so now almost two years after the event we are trying to get someone to admit liability for what has happened.”
The NHS Wiltshire Primary Care Trust said in a statement: “[We have] put in place a series of actions to ensure that such an event will not occur again either for this patient or others. The incident is the subject of likely litigation so the PCT is restricted in what further it may say in public.”
Ms Aylward has been suspended while the incident is investigated by the Nursing and Midwifery Council.
Their guidelines say a nurse should work within their level of competence and have the skills to undertake whatever care they are delivering.
Ms Aylward, who is from Reading, has not responded to requests for an interview.
The programme will be shown on Inside Out West and Inside Out South on BBC One at 1930 BST on Monday 25 October.
The Broken Of Britain
Brilliant blogger Bendygirl has just set up a brand new group blog called The Broken Of Britain. This blog comes shortly after Bendygirl’s V-Logging success. Its Homepage reads:
To the disabled people of Great Britain. Our individual voices are too quiet to be heard, but collectively we can shout loud enough to drown out this tide of abuse against us. Disability Hate Crime, lack of full legal protection, people in care homes costing too much to be let out and not one political party willing to fight for us. We must emulate other successful civil rights movements and with polite determination take our place as equal members of society.
Same Difference fully supports this new blog and will be doing everything possible to help. I ask those of you who are in the UK to do the same.
Man Pleads Guilty To Murder Of Philip Holmes
A man has admitted killing a disabled former coal merchant who was found dead at home by his carer in April.
The body of Philip Holmes, 56, was discovered in his flat in Rhyl, Denbighshire on 16 April, after he had been seriously assaulted.
Martin Mather, 22, of Abbey Street in the town pleaded guilty to the murder at Caernarfon Crown Court.
He was remanded in custody and will be sentenced on 15 November.
Mr Holmes, who used a frame to walk following an accident, was said to have been “well known” in the area.
At the time of his death his brother Andrew Holmes said Philip, a former coal merchant, had been rebuilding his life after years living in hostels and with friends.
An accident at work at the age of 18 left him disabled and unable to walk without a frame.
The death was initially described by police as “unexplained” but six days later it became a murder investigation.
Driver With Bionic Arm Dies After Car Crash
A man thought to be the first to drive using a mind-controlled robotic arm has died in an Austrian hospital after a serious car crash.
It is not known whether his bionic arm had any role in causing the accident.
Christian Kandlbauer, 22, was found in the wreckage of his specially-adapted Subaru on Tuesday.
Late on Thursday he was pronounced brain-dead in intensive care at the Graz hospital and his life support was switched off.
Mr Kandlbauer lost both of his arms four years ago, after being shocked by 20,000 volts.
He was fitted with a mind-controlled robotic arm by the medical technology company Otto Bock Healthcare, which said it was the first project of its kind in Europe.
Using both his left and right arm – which was a normal prosthetic limb – he was able to pass his driving test in a specially converted car.
On Tuesday he was found by a lorry driver who came across his burning car on a road near Bad Waltersdorf in south-east Austria.
The driver managed to put out the flames, but it needed firefighters to extract Mr Kandlbauer from the mangled wreckage.
He had been interviewed by the BBC about his revolutionary limb earlier this year.
“I feel very happy,” he said at the time. “It is like my earlier arm – I feel that my arm is a part of my body.”
He had returned to work as a warehouse clerk at the garage that once employed him as a mechanic.
He said he was grateful that he had the freedom to get on with his life.
Kellie-Ann Cottam
A mother-of-four, who claims £37,000 a year in benefits, is calling for the government to help her get back to work in the wake of the Spending Review.
Kellie-Ann Cottam, 32, from Chorley, suffers from a painful disability called Ehlers Danlos syndrome, and needs help to care for her children.
To maintain the same lifestyle, she said she would need to earn £60,000 a year to meet her family’s needs.
Ms Cottam currently claims income support, child benefit, housing benefit, incapacity benefit and housing benefit.
But she also gets free prescriptions, school meals for the children and free trips to the dentist and the optician.
“I am so grateful for the benefits system, I don’t have a husband, I don’t have a breadwinner – the state is my breadwinner,” she said.
Ehlers-Danlos syndrome is a condition which leaves her body unable to produce collagen causing connective tissue disorders and ongoing pain.
Through the government’s motability scheme she has also been given a specially adapted people carrier for herself and her children, who are aged between seven months and 14 years of age.
“I didn’t believe that 10 years later I would still be in the benefit system – it was only meant to be while I got divorced,” she said.
“It was only meant to act as a bridge but it has now become a way of living.”
She also has the help of a social worker and a care worker on a regular basis. She said she felt “trapped” by the benefits system and wanted support to help her get back into work.
The Department for Work and Pensions (DWP) said: “The current system is broken and beyond repair.
“It will be gradually replaced with an integrated payment that will sharpen work incentives and personalised support for those with the greatest barriers to employment.”
Ms Cottam is now waiting to find out how the cuts will affect her family.
BBC News – Firefighter’s eyesight saved by eye lens operation
Vodpod videos no longer available.
JustGiving Page Of The Week: Gail McDade
Gail McDade’s son Ryan has been treated at The Bobath Centre since he was 6. Now, she wants to thank the Centre by raising as much money as possible for them. So her JustGiving page is this week’s Same Difference JustGiving page of the week.
Mary And Max
BBC Ouch reviews Mary And Max, a movie about Mary, 8, who lives in Australia, and Max, 44, who lives in New York and has Asperger’s Syndrome. The movie is a ‘claymation’ and opens tomorrow, Friday 22 October.
Dogs May Help Behaviour Of Autistic Children, Finds Study
The use of specially trained dogs has become commonplace to help blind and deaf people live independently and can also help disabled people with tasks such as getting money from a cash machine and emptying a washing machine.
Now researchers are exploring how dogs may help children with autism as ancedotal evidence over a number of years has suggested they are beneficial.
Autism is a spectrum disorder with problems ranging from relatively mild impairment of relationships and ‘reading’ others, to profound anxiety, limited speech and isolation.
A study conducted in Canada measured stress hormones in saliva and questioned parents about their child’s behaviour before the introduction of a dog into the home, while they had the dog and after the dog was removed.
At the end of the study all the families had the option of keeping the dog which was provided and trained by the MIRA Foundation, in Quebec, which specialises in dogs for the blind, deaf and physically disabled.
Autistic children in 42 families were involved in the study and it was found that stress levels were lower after the introduction of the dog and parents reported fewer problem behaviours such as tantrums, anxiety and better tolerance of household noises like appliances.
On average, parents counted 33 problematic behaviours prior to living with the dog, and only 25 while living with the animal.
The findings were published in the journal Psychoneuroendocrinology.
Sonia Lupien, senior researcher and a professor at the Université de Montréal Department of Psychiatry and Director of the Centre for Studies on Human Stress at Louis-H. Lafontaine Hospital said: “Our findings showed that the dogs had a clear impact on the children’s stress hormone levels.
“I have have not seen such a dramatic effect before.
“Introducing service dogs to children with Autism Syndrome Disorders has received growing attention in recent decades.
“Until now, no study has measured the physiological impact. Our results lend support to the potential behavioural benefits of service dogs for autistic children.”
The dogs had their behaviour assessed and were trained for three months to remain calm even when their environment became chaotic.
Mark Lever, chief executive of the National Autistic Society, said: “The results of this small scale study are encouraging and it is particularly interesting that it focuses on the physiological changes in the stress levels of children with autism.
“Whilst we know that some children with autism can be scared of dogs, we regularly hear from other families who report that their children respond well to the company of dogs or develop some sort of special connection, and we are keen understand this further.
“Pilot programmes with autism assistance dogs are at a early stage in the UK and there are presently very few trained dogs available, however the NAS is keen to see these projects extended.
“We are also interested to learn more about the potential benefits of owning a pet dog. As a result, we are embarking on a research project which aims to assess the impact a pet dog can have on a child’s life.
“For this, we are currently looking for families to take part in this project, and people will be able to follow the progress of the research through our website.”
Special Parents Fight To Care For Son At Home
The father of a teenager left disabled after choking on chewing gum has spoken of his frustration at not being able to care for his son at home.
Rhys Thomas, 19, of Flintshire is unable to speak, see, or move after gum became lodged in his windpipe in 2007.
Grahame Thomas said Rhys can’t leave a care home to return home to Holywell.
Health officials say they want more time to provide a “complex care package” but are committed to a transfer “as soon as possible”.
Rhys was 15 when he had been chewing gum before he went to bed.
It became lodged in his windpipe and he suffered a heart attack, thought to have been caused by lack of oxygen.
He is currently cared for at a home in Colwyn Bay, Conwy.
His parents Grahame and Trish Thomas take him back to the family home for visits, and he spent his 19th birthday there on Sunday.
Mr Thomas said the family was told by the health board that they could finally bring their son home to live next month, where he would receive 24-hour care.
However, he said: “We were going to bring him home one day at a time to build it up gradually, ready for him coming home permanently.
“But now that date has disappeared and nobody has given an explanation why.
“My understanding is that it appears to be maybe more expensive than they anticipated. We’re going to need two carers, so it was never going to be cheap.
“As far as I’m aware, they have had three tenders in, but no decision has been made.
“Given we’re in October it would be impossible for Rhys to come home by 1 November now – we’re looking at weeks if not months.
“In my mind I’m thinking it could be January before anyone makes a decision.
“In the mean time we’re concerned, with all the cuts that are happening at the moment, that someone might actually say it’s too expensive to bring him home.”
‘Really depressed’
Mr Thomas added: “The difficulty is finding one person you can contact, because there are layers and layers of bureaucracy.
“It’s a new trust, then you find people are in interim positions and move on. It’s extremely frustrating. Some days it can make you really depressed.
“We don’t know what the end game is at all. We have got no date.
“With a bereavement, people say you can eventually move on, but we feel that we can’t do that because we don’t know what’s going to happen.
“Nobody’s been able to tell us how long a life span Rhys will have.
“It’s a very poor quality of life, but we want to make it as loving and caring and comfortable as we can.”
A spokesman for the Betsi Cadwaladr University Health Board said: “We are very sorry for the distress and delays experienced by Rhys and his family. There are a number of organisations working with the family to try and ensure that his care needs can be safely met now and in the future.
“A date for Rhys to be transferred home had been suggested for 1 November but despite the best efforts of all involved this has not been possible. Rhys needs a high level of service and meeting his needs requires a complex care package.
“The health board needs more time to ensure that this is provided to him by appropriately trained professionals. We are committed to working with Rhys and his family to put these arrangements in place as soon as possible.”
Interview With Insight Radio
If you follow me on Twitter, you might have read a bit about what I’m about to post late yesterday afternoon.
I was interviewed yesterday by Insight Radio, the radio station of the RNIB. I was asked about, among other things, this blog and the Equality Act. The interview was broadcast this morning. So, if you’d like to know what I’d change for disabled people if I had a magic wand, please click here.
Many thanks to Insight Radio for this very exciting opportunity! It’s a big step forward for me and my blog.
Tribes- A Play About The Deaf Community
The BBC Ouch blog highlights a play called Tribes, about, put simply, the Deaf community. If this is something you might find interesting, please click the link for more information.
Spending Review Leads To Fears For DaDafest
The future of a national arts festival for deaf and disabled people looks uncertain due to the Spending Review.
The DaDa International Festival in Liverpool is a 16-day series of events which attracts more than 11,000 people from across the UK.
It relies on city council and Arts Council England funding but Chancellor George Osborne has announced spending cuts to both bodies.
Many disabled artists will also be affected by the £7bn in welfare cuts.
Ruth Gould, the festival’s founder, said before the results of the review were announced that its funding from the Arts Council next year would be reduced by 10%.
She said she did not yet know how the government’s cuts would affect the festival’s funding for next year.
“I am scared, yes, in the past few years disabled and deaf people have been getting a voice,” she said.
“The Disability Act has helped ensure certain things are put in place so we can enter mainstream work.
“Now, however, I feel all those mechanisms are going to be watered down.
“Disability awareness could be put back on the bottom of the pile.
Arts cuts
“We are the poorest in society, one out of two of us is unemployed. With these new widespread spending issues we are going to bear the brunt of it.”
However, she said Mr Osborne’s announcement was “not as bad as expected”.
There will be a 15% cut to front line arts grants but there will also be a 41% cut to administration within the Arts Council which is likely to impact those reliant on its funding.
DaDa International Festival is the only long term event of its kind in the UK and runs from 18 November to 3 December.
It has been running annually for the past decade.
This year there will be 170 artists displaying their work. Ms Gould said that since the festival began in 2010 more than 100,000 people had visited and been involved.
Of those, she said, 75% had gone on to find work and further their careers.
Frances Inglis Launches Appeal
A “devoted” mother given a life sentence for murdering her severely disabled son with a shot of heroin launched her appeal in the high court today.
Frances Inglis, 58, from Dagenham, east London, killed her 22-year-old son Tom in 2008 after he was left in a vegetative state following an accident when he fell out of a moving ambulance.
Though she has never denied deliberately giving him a fatal overdose in his hospital bed – and attempting to do the same on an earlier occasion – she is appealing against both her conviction and sentence, which saw her sent to jail for a minimum of nine years.
She decided to end Tom’s life “calmly and peacefully” because she believed he was in “constant pain” after his accident in July 2007, her barrister told three court of appeal judges in London. She was horrified to learn that the only legal way to let him die was to apply to the high court for an order to withhold food and nutrition, which would result in a “slow and painful death”.
If Inglis’s conviction is overturned, it could prompt a rethink in the laws around assisted dying and so-called mercy killing.
The importance of the case is underlined by the presence on the panel of the lord chief justice, head of the judiciary of England and Wales, who said the case “raises issues of deep moral, ethical concern”.
But he stressed: “There is no law of mercy killing. It is not a defence, it is not an offence.”
At the high court today, her counsel, Alan Newman QC, said Inglis was “a devoted mother, a perfect lady, a person of impeccable character” who had worked for many years helping children and adults with disabilities.
She fell apart following her middle son’s accident, said Newman. “She was entirely taken up with the belief that Tom was suffering and that he was trapped in a sort of living hell and in pain,” he said. “She was no longer the person her family, friends and colleagues had once known.”
Inglis, who was present in the dock of the high court and watched by her husband and two remaining sons, was ordered to serve a minimum term of nine years in January after being found guilty of murder and attempted murder by a jury at the Old Bailey.
Her case prompted public outcry and was widely compared to that of another mother, Kay Gilderdale, who helped her 31-year-old daughter to kill herself. Just a week after Inglis was sent to jail, Gilderdale walked free from court with a 12-month conditional discharge.
Newman showed the judges a bundle of letters written to Inglis from “complete strangers” expressing their concern at her case. But the lord chief justice refused to let him read them to the court, saying that there could be just as many letters from intelligent people holding “a completely different view”.
Inglis’s lawyers argue that the trial judge was wrong not to let the jury decide whether her defence of provocation was valid.
One of the areas of provocation related to the signs of “pain and terror that she believed from start to finish that Tom was suffering”. Newman said Inglis was repeatedly “provoked” by the awful sight of her son’s pain. He compared her feelings to those of a “battered wife” who is driven to commit terrible acts after being subjected to repeated abuse.
Tom Inglis suffered severe head injuries when he fell out of a moving ambulance in July 2007. He had been trying to get out of the vehicle because he did not want to be taken to hospital after being involved in a minor pub fight.
His mother first tried to end his life two months after the accident when he was being treated at Queen’s hospital in Romford, Essex.
His heart stopped for six minutes but he was revived.
The mother-of-three was charged with attempted murder before successfully trying again in November 2008, after barricading herself in her son’s room at the Gardens nursing home in Sawbridgeworth, Hertfordshire, and supergluing the door.
Inglis gave an emotionally charged account to jurors of how she had “no choice” but to end his life and had done it “with love”.
But Judge Brian Barker, the common serjeant of London, directed the jury that no one had the “unfettered right” to take the law into their own hands.
Jurors returned a majority verdict of 10-2 and the judge told them: “You could not have had a more difficult case.”
Though the crown opposes Inglis’s appeal, Miranda Moore QC, said: “We from the prosecution all agree that this was a truly sad case no matter which way you look at it.”
BBC News – Children with Down’s syndrome can get reading help
A new teaching programme developed in the UK could help young children with Down’s syndrome to learn to read more quickly.
Researchers say they noticed an improvement in the speech and language of around 60 children at primary schools in York and Portsmouth in just 20 weeks.
Maria Court’s six year old daughter, Martha, has Down’s syndrome and took part in the study. Maria spoke to BBC Radio 5 live Breakfast’s Shelagh Fogarty about her daughter’s reading progress.
Vodpod videos no longer available.
Spending Review Live Blog
Many thanks to Scope for setting up this Live Blog of the Spending Review announcement, and for allowing Same Difference to be associated with it. Please click here to read or participate in the Live Blog (link opens in a new window.)
Boys More Likely To Have SEN, Finds Study
Almost one in four primary school boys in England has special educational needs (SEN), a government report finds.
More than 41,000 primary school boys (2%) have a statement of needs and 489,250 (23.4%) have unstatemented needs.
This compares to 15,600 SEN girls (0.8%) with statements and 269,890 girls (13.5%) without a statement.
Last month Ofsted said thousands of pupils were wrongly labelled as having special educational needs.
All these pupils required, inspectors said, was better teaching and support.
The Ofsted report found as many as half of all pupils identified for School Action, the lowest SEN category, would not be identified as having these needs if schools focused on improving teaching and learning.
SEN pupils at 21%
The latest study, published by the Department for Education (DfE), examined the numbers and characteristics of children with SEN.
The findings show the number of pupils with SEN in England increased from around 1.53 million (19%) pupils in 2006 to approximately 1.69 million (21%) pupils in 2010.
Boys were two and a half times more likely than girls to have statements at primary school, the report said.
And at secondary school, they were nearly three times more likely to have statements compared to girls.
The report found that boys and girls were likely to have different types of SEN.
Boys with statemented SEN were more than twice as likely to have behavioural, emotional and social difficulties or autism than girls.
In total, 26,170 boys (17.2%) with SEN statements had behavioural, emotional and social difficulties compared with 3,590 girls (6.2%).
Girls with SEN statements were more than twice as likely to have profound or multiple learning difficulties or hearing problems compared with boys.
Children’s minister Sarah Teather said: “Pupils with SEN are not getting the support they need to succeed and are falling behind as soon as they start school.
“It is not right that only 5% of young people with statements of SEN go on to higher education.
“We must change the system so that having SEN or a disability does not predetermine a child’s future.”
Tormented Lives
I’ve just seen most of the documentary Tormented Lives on the BBC. I noticed there was a lot of discussion of this programme on Twitter tonight and thought I’d post this for anyone who would like to continue that discussion here.
A worker in a wheelchair who was nicknamed ‘Ironside’ after the disabled 1970s TV detective has won a £6,000 payout for his ‘violated dignity’.
Ironically, the ill-advised quip was made by a manager at Remploy, the firm whose
purpose is to help people with disabilities return to work.
Employee Brian Davies took the company to a tribunal after finding out that he was being referred to as ‘Ironside’ behind his back.
While the television series starring Raymond Burr as the investigator paralysed by a sniper’s bullet has been hailed for its positive representation of wheelchair-users, Mr Davies complained he found the name offensive.
Despite claims that he had acted in a ‘belligerent and threatening’ manner, the tribunal found in his favour.
Mr Davies, who has brittle bone disease and was made an MBE in 2000 for services to disabled people, welcomed his award, saying he felt he had been treated with ‘contempt’.
‘I’ve used a wheelchair all my life, and when I was a kid I got called “Ironside” as well as “cripple”, and I hated it,’ he said.
‘But this is the 21st century and adults don’t go around calling each other silly and derogatory nicknames like that.
‘I found it insulting and belittling to be referred to as “Ironside” at work.’
Mr Davies, a divorced father-of-three from Wigan, has worked for Remploy for 30 years, originally as a machinist but now as a full-time representative of the GMB union although he is still paid by the Government-supported firm.
Last year he found out that Steve Wellens, the manager of one of the plants for which he was responsible, the Burnley packaging factory, habitually referred to him as ‘Ironside’ in front of other employees.
He complained to Remploy, but even though it disciplined the manager, Mr Davies took the firm to a tribunal demanding compensation.
At the hearing in Manchester, Remploy argued that Mr Davies often used foul and aggressive language and that he could not have been seriously offended by being called Ironside.
But employment judge John Sherratt concluded: ‘We find that his dignity was violated.
‘If someone uses what might be considered offensive language it does not mean that the person cannot reasonably be offended by remarks relating to him and his disability.’
Mr Wellens, a father of two, said: ‘I’m not happy with the verdict. I feel a bit hard done by.’
A spokesman for Remploy said: ‘We accept the tribunal’s decision and apologise to Mr Davies.’
Cirque Nova
The BBC Ouch blog has a post today about Cirque Nova, a circus skills company that is offering free circus skills training to 14-25 year olds with DisAbilities. If that sounds like fun, please click the link for more information.
David Blunkett Writes About Guide Dog Sadie
David Blunkett’s current guide dog, Sadie, is soon to retire. In today’s Daily Mail, David Blunkett writes about their time together. I’m linking the article for any of you who might be interested.
NI Families Call For More Epilepsy Support
The family of a three-year-old Londonderry girl, who takes up to 15 seizures a day, have called for more epilepsy support in the north west.
Aoibh Cutliff’s family have added their weight to a campaign from the Foyle Support Group for Children with Epilepsy.
The group wants a fundamental review of epilepsy services at the Western Health Trust.
Aoibh’s mother, Brid, said there was a shortage of doctors and nurses.
She said that Aoibh frequently had to travel to the Royal Victoria Hospital in Belfast for an E.E.G. (Electroencephalograph) scan.
“We’re told to wake her up at five O’clock in the morning and keep her awake, because they like her to sleep while she is having the E.E.G,” she explained.
“When I wake her up, she takes more seizures than when I wake her naturally.
“We need an E.E.G. in Altnagelvin.
“We also need a full-time epilepsy nurse.
“At the minute, there’s a part time nurse who has never set eyes on Aoibh.”
Dedicated funding
The Western Trust said that it did not receive dedicated paediatric epilepsy funding but that it was committed to providing specialist children’s services.
A spokesperson said: “While children with complex epilepsy are referred to the specialist neurology service in Belfast, neurology clinics are facilitated at Altnagelvin Hospital and the Erne to provide a local outreach clinic for local families.”
The Trust also said it would endeavour to expand paediatric epilepsy services by seeking dedicated funding in the future.
