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Tango 190: The Story Of PC David Rathband

July 5, 2011

Tango 190, PC David Rathband’s own story of the Raoul Moat incident, was published today. Full details of the book are here.

The Grange Day Centre To Close At End Of Month

July 5, 2011

What a shame.

A day care centre in Shropshire for physically disabled adults is due to close at the end of the month.

People attending The Grange Centre in Shrewsbury will instead be given budgets to buy a personalised package of care and support.

Shropshire Council said it wanted to provide people with an opportunity to have “much greater choice”.

Ray Taylor, the father of one centre user, Christopher, said his son could lose most of his friends.

Christopher is looked after by parents aged 79 and 80 and has round-the-clock care, broken only by his twice-weekly visits to the site.

Ray Taylor said: “He’s got to adapt to another situation.

“We wouldn’t get the short-term respite breaks that we have had in the past.”

Stephen Chandler, from Shropshire Council’s adult social care, said it wanted to provide people with an opportunity “to have much greater choice, much greater control over the way that their support is organised and delivered”.

“[This is done] by giving people the individual budget associated with the cost of their support and supporting them in finding ways in their local communities for those needs to be met.”

Should IVF With PGD Be Used For Adult Diseases Like Breast Cancer?

July 5, 2011

I’m blogging this because I think I have some readers who are interested in IVF with PGD. It’s a difficult issue, and I’m not sure how I feel about it. Your comments, as always, are very welcome.

New genetic treatments can help couples ensure their baby will not inherit family diseases such as cancer but, as Adam Wishart explains, advances in science bring with them new dilemmas.

A year ago, in South Shields, teacher Daniel Stanley faced one of the toughest things for a brother – watching his younger sister Natasha die of breast cancer at the tender age of 28.

“It is hard to watch someone like that. Optimistic one minute, and then to receive another diagnosis,” said Daniel.

As Natasha died, she discovered that the cancer had a genetic basis on one of two breast cancer genes, BRCA1 and BRCA2.

Daniel was also tested and found out that he had the same gene.

It placed him on the horns of a very difficult dilemma because he wanted children, but did not want to pass on the gene.

Different ethics

Through his genetic counsellors, he and his partner Danielle were offered Pre-Implantation Genetic Diagnosis (PGD) – a technique which screens IVF embryos for genetic disorders.

When the embryos are only eight cells large, an embryologist very carefully makes a hole in each shell, and sucks out a single cell to be tested genetically.

Any that are free of the faulty gene are transferred into the mother’s womb.

PGD has been offered by the NHS for more than a decade for serious diseases that come early in childhood, like cystic fibrosis or Tay Sachs, a neurological disease.

But for a treatable adult disease the ethics are debatable, and so the first child free of the breast cancer gene by PGD was born only in 2009.

There are some that argue that by using PGD for these diseases Britain is taking a step onto a dangerous slippery slope.

Mutant gene

Professor Michael Baum, a leading researcher in breast cancer, is doubtful whether PGD should be used for inherited breast cancer.

“There is a phenomena in genetics and cellular development called co-expression in which two genes can be stuck together,” he said.

“If you have the mutant gene, that might be co-expressed with favourable components of the human genome.

“So if you breed out the BRCA1 and BRCA2 mutation you may inadvertently breed out something of value.

“Just say it is the gene or the complex of genes for beauty, or say it is a complex of genes for high intelligence.

“There is a risk. If we select out all the embryos that have these mutations then we might be selecting out some of the best people in society.

“Now you think that is facetious. It may not be beauty and intelligence but it may be something else that has an evolutionary advantage.”

Pioneers

Despite the arguments, Daniel and Danielle have decided to become part of the pioneers for breast cancer.

“I think I’d feel a lot less comfortable with the idea if we were being more selective – if we were saying we wanted a boy or a girl,” said Daniel.

Danielle said: “We are not changing the genes, we are just selecting the embryos without a cancer gene.

“The other option we were given was to conceive naturally and then to have a gender test and then have a termination if it was a girl. I couldn’t do that.”

Daniel feels that having watched his sister, preventing that kind of suffering is almost a kind of duty.

“If science has given me that power to do something about it then really I should use that power. That is something that the human race has created – it is part of the history of our progress and that is an opportunity really.”

Daniel and Danielle hope to go through PGD later in the year at Guy’s hospital in London.

Should I Test My Genes? The Price of Life will be on BBC Two at 2100 BST on Tuesday 5 July 2011 and after on BBC iPlayer (UK only)

Councils Cut Respite Care In Parts Of Wales

July 5, 2011

Cuts have been made to support for families needing respite care in parts of Wales, figures obtained by the BBC have shown.

Statistics gained under the Freedom of Information Act show nine councils have reduced how much they plan to spend.

It has led to concern that vulnerable groups are denied support some carers call “light at the end of the tunnel”.

The Welsh Government said it was up to councils to ensure they had necessary respite placements.

According to figures provided by 21 of the 22 local authorities to BBC Wales, cuts have been made to defined respite budgets in Blaenau Gwent, Ceredigion, Neath Port Talbot, Newport, Swansea and Torfaen.

In Carmarthenshire, Conwy and Monmouthshire, the overall residential care budget, which includes provision for respite, has been cut.

In several other counties the budget for respite in 2011-12 was up on last year, but in some cases represented a cut on previous years.

No figures were provided by Anglesey council.

The figures show Swansea Council has cut its internal provision respite budget for older people and younger adults by over 80% in the last two years.

In 2009-10 it spent over £680,000, but this year the budget is less that £108,000.

Director of social services Chris Maggs admits the council is operating in a tough financial climate, but insists the changes will improve choice.

“We’re faced with some incredible challenges as local authorities, and we obviously need to look at how we use all of our resources.” said Mr Maggs.

The council has decided to transfer money from respite care into its own residential homes, who will provide short breaks in the future.

“What we’re doing is re-using our money,” he said.

“Whilst it is true that we’re reducing the total amount of money, we’re also improving the range of services we have by using our existing services in a different way, so it maximises what we’ve actually got.”

‘Very isolating’

But the potential changes have angered some families who depend on respite care.

Suzanne Hayes, from Rhossili, near Swansea, is a carer for her 27-year-old stepson John, who has cerebral palsy.

She described the six weeks of respite allocation they are given every year as “light at the end of a tunnel”, but she feels strongly that the family need more support.

“John needs to have breaks because he can mix with different people,” she said.

“We live in a beautiful area, but it is very isolating for John.”

The short respite breaks also give the family time to recover while John is away.

“It’s not the big things, it’s going for a coffee. It’s having your own knife and fork in your hands, because we have to feed John.”

According to the charity Carers Wales, respite provision is already in short supply, but the cuts being made by local authorities will limit support even further.

“For individual families if a respite service which they’ve relied on gets cut, that’s a real problem,” said director Roz Williamson.

“But for most families, the problem is that they can’t get access to anything – so the qualification for getting any help from a local authority keeps going up and up and up – so most families get nothing.”

A consultation on the future of respite care in Wales has recently closed, following an independent review which said there was “a strong case for funding more outcome focussed respite services in Wales”.

The Welsh Government said it recognised “the important role that respite care has in supporting individuals and families at what can be an extremely difficult time”.

A spokesperson said: “We are protecting the social services budget through the local government settlement. Funding for social services will increase in cash terms by £35m by 2013-14.

“It is a matter for local authorities to ensure they have necessary respite placements.”

IPC Swimming Championships- Official Website

July 4, 2011

For anyone who is following the IPC swimming championships this week,you can watch them on Youtube here.

The Dilnot Review: Three Useful Links

July 4, 2011

Well, Andrew Dilnot has published the findings of his review of adult social care. Here are three useful links on this from the Guardian:

 

Scottish MS Respite Centre Leuchie House Saved, Becomes Charity

July 4, 2011

This is fantastic.

Scotland’s only respite centre for Multiple Sclerosis sufferers may have secured its future by becoming an independent charity.

A high profile campaign to save Leuchie House in North Berwick was launched after the MS Society withdrew its funding in December.

The management team put in a bid to operate the centre themselves after securing independent funding.

They were granted a six month reprieve to allow for a smooth transition.

Four centres across the UK were at risk of closure after the MS Society decided to move out of providing respite care.

Centres in York, Surrey and Warwickshire are to be sold to other companies.

Leuchie House offers more than 7,000 respite care days to MS sufferers from across the UK.

IVF May Increase Risk Of Downs Syndrome

July 4, 2011

Drugs used in IVF for older women may increase their risk of having a baby with Down’s syndrome, experts say.

Doctors already know that the chance of having a baby with the genetic condition goes up with the age of the mother, especially for those over 35.

Now UK researchers, who looked at 34 couples, think drugs used to kick-start ovaries for IVF in older women disturb the genetic material of the eggs.

Work is now needed to confirm their suspicions, a meeting in Sweden heard.

And they do not yet know the magnitude of risk, but say it could also cause many other genetic conditions, not just Down’s.

The findings, presented at the European Society of Human Reproduction and Embryology’s annual conference, come from a UK study of 34 couples undergoing fertility treatment.

All of the women in the group were older than 31 and had been given drugs to make their ovaries release eggs ready for their IVF treatment.

When the researchers studied these now fertilised eggs they found some had genetic errors.

These errors could either cause the pregnancy to fail or mean the baby would be born with a genetic disease.

A closer look at 100 of the faulty eggs revealed that many of the errors involved a duplication of coiled genetic material, known as a chromosome.

Often, the error resulted in an extra copy of chromosome 21, which causes Down’s syndrome.

But unlike “classic” Down’s syndrome which is often seen in the babies of older women who conceive naturally, the pattern of genetic errors leading to Down’s in the IVF eggs was different and more complex.

And this led the researchers to believe that it was the fertility treatment that was to blame.

Lead researcher Professor Alan Handyside, director of the London Bridge Fertility, Gynaecology and Genetics Centre, said more research was now needed.

“This could mean that the stimulation of the ovaries is causing some of these errors. We already know that these fertility drugs can have a similar effect in laboratory studies. But we need more work to confirm our findings.”

If more tests back up their suspicions then it would mean that doctors should be more cautious about using these treatments, he said.

The researchers believe their work could also help identify which women might be better off using donor eggs for IVF instead.

Co-investigator Professor Joep Geraedts, of Bonn University in Germany, said: “This in itself is already a big step forward that will aid couples hoping for a healthy pregnancy and birth to be able to achieve one.”

UK fertility expert Mr Stuart Lavery said: “There’s a huge increase in the number of women undergoing IVF at later ages as people delay the age of starting a family.

“Previously we have always thought that these chromosomal abnormalities were related to the age of the egg.

“What this work shows is that a lot of the chromosomal abnormalities are not those that are conventionally age-related. It raises the concern that some of the abnormalities might be treatment-related.

“It’s a little unclear as to whether it’s the medication itself that is affecting the egg quality or whether it’s the medication that is just forcing the issue and allowing eggs that nature’s quality control system would have otherwise excluded, to arise.”

What Happens To People While Animals Have Hydrotherapy?

July 3, 2011

Last Monday, I came across a video of a paralysed cat having hydrotherapy. On Tuesday, I posted it on my blog, hoping to make some readers smile as London recovered from the previous day’s heatwave. I’m a cat owner and cat lover, so I didn’t think much of it. Until yesterday, when I saw this video of a fox also having hydrotherapy.

As a charity worker and disability blogger, I’ve heard countless stories of children waiting so long for wheelchairs that by the time the chairs arrive, they no longer meet the children’s needs. One story stays with me, of a man who slept in his wheelchair for years because he wasn’t provided with physiotherapy as an adult and became too stiff to get into his bed.

I’ve heard stories of disabled children being provided with a limited amount of nappies per day for free from their local authority. Nappies. Would anyone dream of asking an able bodied child to limit the number of nappies they fill in a day?

I’ve heard stories of wheelchair users having to prove they are disabled to get the support they desperately need. Stories of loving families almost torn apart by a lack of funding for respite care for severely disabled children.

Most recently, as the Government plans spending cuts and welfare reforms that will directly affect disabled people, I’ve heard stories of real worry and fear about what will happen when disabled people fail assessments for benefits they need to survive.  Yet cats and foxes are receiving hydrotherapy, and all we can do is smile. I’ve admitted to smiling as much as anyone, but when the smile faded I stopped, remembered everything I’ve written above, and wondered, am I the only one who sees something wrong here?

If that cat and fox had been children or young people, would they have received the support they needed to heal their broken paws? I hope so, but I have my doubts. Would their owners and rescuers have considered funding hydrotherapy sessions for two disabled children at the same time? I wonder if this thought ever even crossed their minds.

Animal lovers- I love my pet just as much as you love yours. One day, I hope we’ll all be free to treat animals like people. But first, I, for one, think we really should stop treating people like animals.

Wimbledon 2011: Wheelchair Results

July 3, 2011

World number one singles player Esther Vergeer and her partner Sharon Walraven came from 5-2 down in the deciding set to successfully defend their Wimbledon wheelchair doubles title.

The Dutch pair beat their compatriots Jiske Griffioen and Aniek van Koot 6-4 3-6 7-5 in a thrilling match.

There was also Dutch delight in the men’s doubles decider.

Ronald Vink and Maikel Scheffers defeated French pair Stephane Houdet and Michael Jeremiasz 7-5 6-2.

It was an amazing comeback by Vergeer and Walraven, who are unbeaten in Grand Slam doubles competition since losing last year’s French Open final at Roland Garros.

Both van Koot and Griffioen served for the match in the decider but Vergeer, who has won her last 418 singles matches, and is the sport’s stellar figure, raised her game to secure her third successive Wimbledon title and continue her unbeaten record at SW19.

“Although we were close to losing I always felt we had a chance, even at 5-2 down,” Vergeer told BBC Sport afterwards.

“But being in a Wimbledon final gives you that extra motivation to just fight for it and try your hardest. It is a very special tournament.”

Walraven, who is the world number one doubles player, added: “At some points it was good we had each other. Esther said the right things to me when I wasn’t hitting the ball very well and I did the same to her. In doubles it’s good to keep motivating each other.”

Houdet and Jeremiasz took an early 4-2 lead in the opening set of their final but Scheffers and Vink were always in the set and won the next three games to go 5-4 up

Houdet sent down two aces at 100mph and 93mph to level it 5-5 before Scheffers held to edge 6-5 ahead.

It left Jeremiasz serving to stay in the set but a double fault and a Vink winner handed the set to the Dutch pair.

Vink and Scheffers edged 3-2 ahead in the second set and from then on they created more opportunities and sealed victory with a forehand winner from Scheffers.

“It means a lot because it was the only Grand Slam we had never won together and it also gives us revenge for losing to the French pair in France last week. To beat them at Wimbledon is special,” said Vink afterwards.

“We’ve done well this week,” added Scheffers. “Mentally this is a good win and sets us up for the rest of the year for the British Open in Nottingham later this month and the US Open in New York.”

There was no joy for British pair Lucy Shuker and Jordanne Whiley who were beaten in the women’s third and fourth place play-off.

They lost 6-3 7-6 (10-8) to Belgium’s Annick Sevenans and Marjolein Buis of the Netherlands.

Last year’s winners Robin Ammerlaan of the Netherlands and Sweden’s Stefan Olsson, who lost to Vink and Scheffers in Saturday’s semi-finals, took third in the men’s event with a 6-3 6-3 victory over Dutch teenager Tom Egberink and Shingo Kunieda of Japan.

IPC Swimming Championships

July 3, 2011

Paralympic champion Heather Frederiksen has more than just winning medals on her mind ahead of this week’s IPC European Swimming Championships in Berlin.

The 25-year-old from Leigh was one of the darlings of the GB team at the Beijing Games in 2008, winning a gold, two silvers and a bronze.

But things started to go wrong for her at the 2009 European Championships in Iceland when she suffered a severe asthma attack after one of her races.

In May 2010, the International Paralympic Committee announced that she had been given a six-month ban, backdated to October 2009, after she had tested positive for a raised level of the drug Salbutamol following the incident.

Although Frederiksen had been cleared to use her asthma inhaler, the levels of the drug found in her body were higher than those permitted for medical reasons.

After missing out on last year’s World Championships in Eindhoven, Frederiksen returns to the big stage in Germany, keen to put down a marker ahead of London 2012 and have people focus on her ability in the pool.

“Salbutamol is a drug which helps asthmatics and it needs to be taken in chronic situation and the situation in Iceland was a chronic one. I could possibly have died if I hadn’t taken my inhaler,” she told BBC Sport.

“It was a situation where I did what I had to do to save my life and I would do it again. I was having an asthma attack and I couldn’t breathe. I was in fear for my life.

“Hopefully people will see it was a potential life or death situation. I know I’m not a cheat and I know I can go into a pool with a clear conscience knowing I didn’t take something I wasn’t supposed to take.

“When I heard about the ban I was devastated because I knew I hadn’t taken anything I shouldn’t have. I understand the rules but it was something I had to do to save my life.”

Frederiksen, who suffered an accident five years ago that left her with reduced mobility down the right side of her body, is the fastest woman in Europe in her S8 category in the 100m backstroke, 50m freestyle and 400m backstroke and will be hoping to come away with more medals.

“I want to go out and do what I normally do and win and have people talking about gold medals rather than drug tests,” she added.

“Considering I’ve struggled with my asthma all year I don’t think my training times have been too bad. My competition times have been strong and I’m still ranked in the top times in the world so I’m going out to give it a good go.

“I want to go as close as I can to my personal bests and to go and race hard and fast which will be a good stepping stone towards next year’s Paralympic trials and the Games themselves.”

The 40-strong GB team, which includes experienced campaigners like Matt Walker, Ellie Simmonds, Stephanie Millward and Liz Johnson will expect to top the medal table in Berlin in the last major international test before the London Paralympics.

There are also high hopes for newcomers like Susie Rodgers, who will be hoping to make an impact in her S7 category, Preston teenager Jack Bridge and Oliver Hynd, who joins elder brother Sam in the squad.

Charities Threaten Government With Legal Action Over Benefit Cuts

July 2, 2011

Possible good news from today’s Guardian:

The government faces a legal challenge from charities over its plans to cut benefits for disabled people by more than £2bn.

The Disability Alliance has warned the Department for Work and Pensions (DWP) that it will take legal action to obtain a judicial review of ministers’ plans to replace the Disability Living Allowance.

The alliance, a coalition of 270 disability charities, said ministers had not properly assessed the negative impact of the benefit cuts, adding that the reforms did not comply with the Equality Act.

It has issued a “letter of claim” to the DWP calling on it to demonstrate that it has fulfilled its legal obligations to properly analyse the impact of welfare reforms on disabled people. If the department does not comply, the letter also warns that ministers face legal action.

Neil Coyle, Disability Alliance director of policy, said the government may be in breach of both domestic and European legislation, including its responsibilities under the UN Convention on the Rights of Persons with Disabilities.

“We are giving formal notice that unless the concerns that disabled people have legitimately raised are addressed in the context of the welfare reform bill, there is a strong legal case,” Coyle told the BBC.

“Our legal advice… is that the government may be in breach of both domestic and European legislation if it fails to consider the impact on disabled people of the plans to cut £2.17bn from DLA expenditure.”

The alliance contends that the government’s welfare reform bill will disproportionately disadvantage disabled people and their families.

Among its main concerns are proposals to abolish the care component of DLA at the lowest rate of just under £20 a week, which is received by 652,000 people, and to end mobility support for disabled care home residents, without clarifying how the impact of this loss in support would be mitigated for the 78,000 disabled people affected or their families.

Coyle said disability charities were threatening to take legal action because the government had ignored the concerns they raised in the formal consultation on the welfare reform bill, which ended in February.

Coyle said more than half of the disabled people who use the DLA to help them to work say they would have to give up their job if the benefit was cut.

“For many disabled people, it helps to pay for an adapted vehicle, so if you can’t afford to run a vehicle, and that’s what you’re using DLA for, there’s a strong chance you won’t be able to continue in work,” he said.

“One in seven disabled people have been telling us that without DLA they won’t be able to manage their health condition or impairment, and they’re more likely to have hospitalised periods, which cost far more to the taxpayer than paying, for example, £19.55 a week, which is the bit of the DLA expenditure the government is targeting for ending.”

The DWP said: “We are following the usual processes and are working with disability organisations on DLA reforms, including with the design of the assessment.

“It is premature to talk about a judicial review as the regulations do not go through until 2012.”

Claire Khaw Suspended By BNP

July 1, 2011

Good news from Facebook:

Claire Khaw has had her membership suspended by the BNP. She has written a fairly …. ahem …. explosive blog post about this.
I gather that her suspension is in relation to her comments regarding disabled babies. She now says she never advocated the killing of babies with disabilities – just that she would not wish to raise a disabled child herself. Anyhow – they have suspended her.

Even the BNP don’t want her. Says it all really, doesn’t it?

Progeria May Have A New Treatment

July 1, 2011

On June 29, 2011, the Progeria Research Foundation published encouraging results from a study that may lead to a treatment for this devastating genetic condition. Progeria, also known as Hutchinson–Gilford Progeria Syndrome, causes rapid aging in children. A study completed at the National Institutes of Health and Massachusetts General Hospital in Boston has had encouraging results in using rapamycin to stall the effects of the disease.

Rapamycin, commonly used to thwart organ rejection in transplant patients, was shown to reduce the amount of the protein responsible for rapid aging by 50 percent and causes the cells to live longer. While the study was conducted on non-Progeria mice, the results are cause for optimism.

While Progeria is an incredibly rare disease with only 78 sufferers currently living in 30 countries throughout the globe, finding a treatment or cure would also benefit the rest of mankind. Understanding aging and finding ways to combat it is essential to increasing the human lifespan and improving health via combating age-related ailments such as arthritis.

It’s still too early to make grand statements about the possible efficacy of this new treatment, the medical community is optimistic. Understanding the drug’s effects on Progeria means that the human race is one step closer to understanding and treating the universal disease of aging.

Yvonne Freaney Sentenced To 36 Month Supervision Order

July 1, 2011

A judge has told a mother who killed her severely autistic 11-year-old son she has been punished enough as he spared her prison.

Yvonne Freaney, 50, of Penarth, Vale of Glamorgan, had admitted the manslaughter of her son Glen at a hotel near Cardiff Airport in May 2010.

Mr Justice Williams gave her a three-year supervision order at Cardiff Crown Court. She had been cleared of murder.

The judge said it was the hardest sentencing exercise he had undertaken.

Freaney was cleared of murder at a trial in May.

The court heard she and son Glen were staying at the Sky Plaza hotel in May last year.

She had moved out of the family home and had been living in hotels for about a month before Glen was killed after her marriage broke down.

The court heard she had suffered years of physical abuse by her husband Mark, a former RAF serviceman, whom she married in 1996.

On the day she killed Glen, she was discovered alive in her hotel room, despite trying to cut her wrists and taking an overdose.

As she was arrested, she told emergency services: “It’s funny. He was laughing when I was strangling him. That is when I knew he was happy.

“I had to do it because now no one can point fingers at him. My only regret is that I couldn’t end my own life.”

During her trial, the court heard that Glen communicated through a computer by tapping on symbols on the screen.

He suffered from severe autism and still wore nappies.

As well as being his main carer, Freaney also looked after her three other children – who suffered hyper-activity disorder, dyspraxia and Asperger’s syndrome – and her elderly mother.

After her arrest, Freaney was detained at a secure mental health unit ahead of her trial before being remanded in custody.

A jury of seven men and five women decided she was suffering “extreme mental stress” at the time she strangled Glen with and cleared her of murder.

Defending barrister John Charles Rees QC said Freaney had never disputed killing her son and was a woman with no previous convictions.

‘Substantial mitigating factors’

He called the prospect of imposing an immediate prison term a “pointless exercise” given that Freaney has “effectively been in custody” since being arrested and would be out on licence within a few days or weeks.

Mr Justice Williams described her as a “loving mother” and accepted there was low risk of her re-offending but said she needed help to address her mental health issues.

He said he wanted to make it clear the taking of a life was a very serious issue, even when a plea of diminished responsibility was accepted by the court.

But he said there were several and “substantial mitigating factors” in the case.

“I found this sentencing exercise the most difficult I have ever taken,” the judge said.

“I believe you have been punished enough.”

Skydiving Benefit Cheat Gets Suspended Sentence

July 1, 2011

I’m not sure how I feel about this. I know disabled people who have done skydives- this doesn’t make them any less disabled or entitled to benefits. Any thoughts?

A woman who was filmed skydiving while claiming sickness benefits has been handed a suspended jail term.

Clare Jones, 38, from Tonypandy, Rhondda, claimed she could only walk 25 metres without crutches, only to be filmed skydiving out of a plane at 12,000 ft (3,657m).

Jones admitted fraudulently claiming £891 in incapacity benefits and £5,125 in disability living allowance.

Jones was told she would have gone to prison without a guilty plea.

Pontypridd magistrate Virginia Osbourne said: “The courts and society take a very dim view of this type of fraud.”.

Jones’ 12-week sentence was suspended for 12 months.

Earlier, the court heard Jones was so proud of her jump she paid for the professional video which was later used in evidence against her.

She also claimed her back was so painful, she could not stand at the cooker or cut vegetables for her partner and three children.

She was caught out after volunteering to do the tandem jump – attached to an experienced instructor – to raise money for charity.

Another parachutist filmed Jones leaping from the aircraft above Swansea Airport and going into a 120mph free fall for 45 seconds.

Jones told benefits officials she was “virtually unable to walk” – and it took her up to 10 minutes to cover 100ft with crutches.

But the court heard she was fit enough to volunteer to do the tandem jump.

The film shows Jones landing comfortably on two feet, smiling and speaking into the camera.

The court heard she was caught after a tip-off to benefits hotline.

She has since repaid the incapacity benefits but still owes the disability living allowance. She was ordered to repay the rest at the rate of £35 a week.

Back problems

At an earlier hearing, Jones accepted she should have declared her symptoms had improved and notified the authorities of her change in circumstances.

Prosecutor Jonathan Holmes told the court that as well as the sky dive, Jones had visited her gym 40 times using the facilities, swimming pool and sauna.

Jones also owned up to walking to her local social club and dancing while claiming she had severe back problems.

Magistrates heard that Jones worked at a sandwich bar and a restaurant while claiming benefits.

Mr Holmes said: “She took part in the charity skydiving event in Swansea but denied it at first. She said she had never done a jump.

“But inquiries with the company involved revealed she did the jump on November 2, 2008 and it was videoed. It was within nine months as registering as disabled.

“She continued to deny it until she was shown the evidence.”

Defending Jones, Owen Thomas said she had done the parachute jump after her father was diagnosed with terminal cancer.

He said: “The jump is suitable for people with worse disabilities than she has including amputations.”

The court heard Jones’ father died this week and his funeral is next Tuesday.

Jones was also ordered to carry out 150 hours of unpaid work.

 

Accessible Holidays For Blind People

July 1, 2011

 

http://twitter.com/#!/scope/status/86727528433188864

Letting Go Of James

July 1, 2011

“I’ve driven home from work in tears many times recently, because I just don’t want to let go”, says Jane, James mother at the start of Letting Go of James. But the truth is that the family isn’t coping with him living at home. He is 16, severely autistic, does not speak and can attack other members of the family.

He has been offered a place in full time residential care, and the family is now going through the process of transition. James three brothers take part in several visits to the school and Charles, James’ father, comments on the irony that the family is spending more times with James just as they are about to say goodbye.

Before the final goodbye they have a last family holiday, which despite some magical moments, underlies the fact that James needs to go.

On the final evening tensions are running higher than normal as his parents prepare James for bed, but there is a real moment of revelation when they all do finally say goodbye, as the youngest sibling touches James for the first time, and with time the boys begin to experience a new side of James.

The process of adjusting continues for the family who do not say that they are ‘happier’. They all miss James more than expected, although they can enjoy doing more together, relax a bit more and are relieved it has happened.

James has a number of successful visits home – although just where home is becomes a heartbreaking issue in the programme.

At Christmas he pulls his first ever cracker, but New Year leads Jane to reflect on her ongoing fears for her son. The initial honeymoon period does pass and Jane and Charles admit there are no fairytale endings. Letting Go of James ends with the recognition – from the whole family – that life will never be easy for James and that there will always be difficult choices.

Producers: Anna Scott-Brown & Adam Fowler
A Ladbroke Production for BBC Radio 4.

Broadcast

  1. Sun 3 Jul 2011
    13:30

The Muscular Dystrophy Campaign’s New Advocacy Service

June 30, 2011

I’ve just recieved the press release below from the Muscular Dystrophy Campaign.

Muscle-wasting disease charity the Muscular Dystrophy Campaign will today formally launch its advocacy service, following a five-fold increase in reports of unjust, inconsistent and distressing treatment at the hands of local authorities and NHS primary care trusts.

Biting public sector cuts have seen an increasing number of people disabled by muscle-wasting disease facing compulsory residential care, inadequate home-care packages and waiting lists of several years for wheelchairs and home adaptations. The Muscular Dystrophy Campaign, which has offered support on hundreds of cases in the past four years, has been forced to set up a dedicated service to deal with the mounting number of enquires.

Those whose cases are taken on will be able to access services including legal advice, liaison with local MPs and health professionals and help gaining support locally through the media.

The Muscular Dystrophy Campaign says that it believes advocacy support from charities can foster better communication and a more thorough approach to cases by health and care services. The charity successfully intervened in the case of Matthew Leadbitter earlier this month, a 34-year-old man from the West Midlands with Duchenne muscular dystrophy, who was forced into residential care due to a refusal of Warwickshire Primary Care Trust to provide specialist care support for Matthew in his family home – despite such care being available in neighbouring counties.

Robert Meadowcroft, Chief Executive of the Muscular Dystrophy Campaign said that an increasing postcode lottery on care provision could see charity campaigners overwhelmed by appeals for help:

“Mounting pressures on public service providers mean that our supporters are having to fight harder than ever to ensure that fair and thorough assessments of their needs are carried out. Our formal advocacy service is designed to make their voices heard, while providing information, case studies and research to support local and NHS authorities in finding workable solutions.”

Disabled People Face More Debt, Says New Report

June 30, 2011

People with disabilities are facing unnecessary extra difficulties when trying to tackle debt problems because creditors are failing to recognise their specific needs, according to the charity Citizens Advice.

About one in five people seeking advice concerning debt problems from Citizens Advice bureaux across England and Wales are disabled or have long-term health problems, and last year Citizens Advice helped more than 72,000 disabled people with debt issues.

But the charity’s Double Disadvantage report shows that disabled people also face additional detriment on top of their debt problems, including poor, untailored and inconsistent communications from creditors; aggressive and inappropriate selling practices; and unfair practice relating to debt collection or enforcement.

It also found that cuts to specialised debt advice services would hit disabled people disproportionately hard.

The charity said one recent client received standard bank statements and other communications in his preferred braille format, but other letters such as those to inform him he had gone overdrawn would arrive in a standard print format.

One woman who was blind and who also had extensive care and mobility needs was approached by a firm offering her a mobility scooter. She told the representative she could not afford any finance, but the firm arranged a home visit anyway. When the sales rep arrived she said again that she could not afford any finance, but felt pressurised and took out the credit agreement.

A mobility scooter was delivered and within a short while began to malfunction, but the firm said they could not find any fault. It then broke down completely, but the firm would not respond to further calls. The lady was left housebound and still paying for the finance, which made it increasingly difficult for her to meet her other financial commitments.

Citizens Advice warned that compliance with the Equality Act 2010 is far from embedded in the day-to-day business practices of all creditors, and it is urging firms to adopt an equality focus on dealing with people in financial difficulties.

Chief executive Gillian Guy said: “Being in debt can be very disempowering for consumers, but our research shows that disabled people in debt face a double disadvantage. They are disempowered by both their financial difficulties and the failure of creditors to take account of their needs through reasonable adjustments.

“Regulators also have a key role to play to support people and protect them from bad practice. They need to provide a clear steer on how to implement the rules governing consumer credit and retail banking to make sure disabled consumers’ needs are taken into account.”

Government cuts threaten further hardship

Citizens Advice carried out the research in conjunction with the Financial Inclusion Fund disability project, a partnership between Citizens Advice, the Royal National Institute of Blind People (RNIB), Action on Hearing Loss, Contact a Family and Mencap to give free holistic debt advice to blind and visually impaired people, people who are deaf or hard of hearing, parents of disabled children, and people with learning difficulties.

The Financial Inclusion Fund has now ended, but has been replaced with the Face-to-Face Debt Advice Programme, which has funding until at least April 2012. But it remains unclear whether this much-needed specialist support will continue beyond this.

Guy added: “Many of the clients we spoke to would not have engaged with their creditors without the help and support from specialist advisers who understood and met their needs.

“It is essential that all future plans to fund debt advice services are equality proofed. This means providing advice through a variety of channels, not just funding the cheapest option. One size does not fit all.”

Government cuts to the disability living allowance could also result in further hardship for some people living with disabilities. From 2013 a new single benefit called the universal credit will replace means-tested benefits, while the personal independent payment will replace the non-means-tested disability living allowance. The aim is to simplify payments to the unemployed, ill and those on very low incomes.

Although the government has claimed that 2.7 million households will be better off through the introduction of the universal credit, it admits 1.7 million will get less money than they now do. For example, people who suffer sudden illness – such as a diagnosis of cancer or a stroke – can currently claim disability living allowance after three months. But following the introduction of PIP in 2013 they will have to wait six months.

The Power Knee

June 30, 2011

The world’s first motorised prosthetic knee is on show at the Science Museum in London.

The prosthetic knee allows amputees to walk as normally as possible.

The Power Knee moves itself rather than requiring the person to do it themselves.

It is equipped with artificial intelligence so it learns how people walk.

The knee adjusts itself to fit the person’s stride and speed enabling users to walk more naturally with less effort.

The Power Knee is already being used by the German health service and private health insurers elsewhere in Europe, including the UK.

Katie: Standing Up For Harvey

June 30, 2011

Katie Price has fame, wealth and success. But she’s also a mother who has to fight for her disabled eight-year-old son, Harvey.

For the first time, the model and businesswoman opens up about raising a disabled child and the discrimination they face.

In this one-hour documentary, we see how Katie Price has to relentlessly stand up for her son and work tirelessly to make sure Harvey has as normal a life as possible.

But it isn’t easy. Harvey’s condition has been publicly mocked and we get an insight into how Katie felt when comedian Frankie Boyle made a controversial joke about her little boy. Katie wants to meet Frankie to explain how this affected her, but will he agree to meet her? And will he apologise?

This is a story not just about Harvey; it’s about all the other Harveys and their families. Katie talks to parents with severely disabled children about how they cope with the negative attitudes they come up against.

We also hear from Katie’s support network – her mum, Amy, and her brother, Danny, as well as the charities and medical specialists who have given their guidance throughout Harvey’s life.

In this insightful story, Katie hopes that speaking out will help people to understand disabilities – and to see families with disabled children in a different light.

Katie Price: Standing Up For Harvey airs on 30th June at 9pm. You get another chance to watch on 4th July at 9pm.

Kelsey Donkin Gets Community Service For ‘Bang, Bang’ Jibe To Pc Rathband

June 29, 2011

A woman who said “bang, bang” to the policeman blinded by killer gunman Raoul Moat has been sentenced to community service.

Kelsey Donkin, 22, made the comment in March when Pc David Rathband arrived at Newcastle Crown Court for the trial of two men accused of helping Moat.

Donkin, of Goschen Street, Sunderland, had earlier admitted using threatening words and behaviour to cause distress.

The judge at Newcastle Crown Court gave her a 12-month community service order.

She was arrested after making the comment and a gun gesture with two fingers behind the officer’s back on 2 March.

A hearing on Monday heard that the incident had caused “great distress” to Mr Rathband.

The unarmed Pc lost his sight after Moat shot him in the face twice, 24 hours after Moat murdered his ex-girlfriend’s new lover and seriously injured her.

Following the shootings, a manhunt started for Moat. The 37-year-old died after a six-hour stand-off with police in Rothbury, Northumberland, on 10 July 2010.

Karl Ness, 26, and Qhuram Awan, 23, were found guilty of helping Moat. Ness was given a 40-year minimum term, and Awan must serve at least 20 years.

Able Life: The Sayce Review

June 29, 2011

Tonight on Able Life, I’m going to be reacting to an interview that Able Radio carried out with Liz Sayce. Chief Executive of RADAR. If you can’t listen in at 8pm, here is a link to what we both said.

Petition Of No Confidence For Care Quality Commission

June 29, 2011

Workers in the residential care home sector have signed a petition of no confidence in the industry regulator – the Care Quality Commission (CQC).

Delegates at the National Care Homes Congress said they had no confidence the CQC could effectively “regulate” health and social care.

The issue was discussed after BBC Panorama alleged vulnerable adults at a unit near Bristol were being abused.

The CQC said no regulator “could stop all unacceptable behaviour”.

The Panorama programme showed secret filming of patients at Winterbourne View, a residential hospital, being pinned down, slapped and taunted.

The unit has since closed and the firm which runs it, Castlebeck, has apologised.

Staff representing the care home industry at the congress in Birmingham on 22 June included care home owners and managers, nurses and senior care assistants.

‘Tick box exercise’

Delegates said that “robust and effective regulation” of the industry was essential but they had “concluded that they have no confidence that the CQC is capable of delivering an effective system of regulation for health and social care”.

Congress delegate Andrew Larpent, who runs Somerset Care, which provides 31 residential homes in the West Country, said he had no confidence in the CQC.

He said: “The CQC have set themselves up as a compliance service and not as a quality service.

“Under the previous inspectorate, we had a real sense that we were all working together to try to continually to improve services.

“Now, we seem to just be doing a tick box exercise and it’s not serving the public well.”

Dr Richard Hawkins, editor of the Caring Times magazine, which helped to organise the congress, said the petition was “significant”.

‘Stop abuse’

He said: “It’s the first time anything like this has happened. I hope it’s going to send a very powerful message to the commission and to the government.”

A spokesman for the CQC said: “No regulator can guarantee to stop all unacceptable behaviour – it is the job of the providers and staff to make sure it doesn’t happen in the first place.

“No system of regulation, however thorough, can stop abuse. But you can build systems to identify risks of harm, based on information from a range of sources, and react to these risks to try to reduce the likelihood of poor care.

“This is what CQC is trying to do. When our systems work, people are protected. The most powerful tool to stop abuse is to ensure that people working in care – whether directors, managers, health professionals or care staff – do not tolerate it.”

More Calls To Care Quality Commission After Winterbourne View

June 29, 2011

More good news.

The head of the Care Quality Commission (CQC) has said the number of people coming forward with concerns increased following the Winterbourne View film.

After BBC Panorama uncovered evidence of abuse at the private hospital in Bristol the CQC admitted it had not acted swiftly enough on the concerns.

Commission chairman Dame Jo Williams told MPs they had received more than 100 calls in the last two months.

This compares with 200 calls throughout 2010.

Dame Jo told the Commons Health Select Committee: “I imagine it was because of Winterbourne View and being in the public domain.

“It’s true to say we are still a relatively new organisation and so it may well have been for the first time people understood what the Care Quality Commission was, who we were and how to get hold of us.”

Patients at Winterbourne View were transferred after the programme showed residents being pinned down, slapped and taunted. The hospital closed last Friday.

Patients at the unit, which is run by the firm Castlebeck, were filmed by an undercover reporter.

Castlebeck subsequently apologised and launched an internal investigation.

A number of people have been questioned by police and released on bail following the programme.

The government said a serious case review had been set for July.

Dame Jo has previously called the CQC’s failure to follow up the reports of a whistleblower – a senior nurse at the home – an “unforgivable error of judgement”.

Doctor Who Kicked Autistic Man Struck Off

June 29, 2011

Good.

A doctor who kicked a patient suffering from autism in a Norfolk residential home has been struck off by the General Medical Council (GMC).

The GMC panel found Dr Robert Bartosik, 47, had kicked the male resident, in his 30s, in the rear during a row over a pair of rubber gloves in March 2007.

The GMC fitness to practise panel ruled his actions were “unacceptable”.

Dr Bartosik, who was a support worker at the time, denied the allegation and claimed a witness was lying.

The GMC panel also found him guilty of deficient professional performance at various NHS trusts throughout the UK.

The panel agreed with a number of his employers that Dr Bartosik, who comes from Poland, had poor clinical skills and poor communication and language abilities.

‘Unacceptable actions’

The doctor was said to have ignored advice from colleagues when he tried to take the gloves from the kitchen of a bungalow at the Treehaven home for people with autism spectrum disorders.

The resident, who has Asperger’s syndrome, began throwing items of cutlery at Dr Bartosik, who retaliated with the kick.

The panel noted: “As a professional person Dr Bartosik should have dealt with the situation in a different way and not have retaliated by kicking the patient.

“The panel is of the view that his actions were out with the boundaries of acceptability and that the public and profession would deem it to be unacceptable.”

Dr Bartosik later worked in 2008 as a locum senior house officer at Dykebar Hospital in Paisley, and at Highbury Hospital in Bulwell, Nottinghamshire, and as a locum psychiatry trainee at the Northern General Hospital in Sheffield.

All three hospitals raised serious concerns about his ability and professionalism, said a summary of the panel’s findings.

His contract was not renewed by Greater Glasgow NHS Trust and was terminated by Nottinghamshire Healthcare NHS Trust.

He left Sheffield after his supervisors were worried he could not even perform such basic tasks as taking a patient’s history.

Dr Bartosik did not attend the hearing in Manchester.

Chediak Higashi Syndrome Girl Dies

June 29, 2011

An 11-year-old Kent girl, believed to be one of five people in the UK with a condition affecting the immune system, has died.

Melanie Cottle from Folkestone suffered from Chediak Higashi Syndrome, which her doctor had not seen for 20 years.

The syndrome causes pale coloured hair, eyes and skin and increased infections in the lungs and mucous membranes.

Her father, Paul left a message on Facebook saying she had died after suffering three heart attacks.

She “left us peacefully in no pain”, he wrote.

“The whole family would like to thank all you nice guys that have supported us.”

Melanie was diagnosed with the genetic condition at Christmas and had been receiving treatment at Great Ormond Street Hospital in London.

Last month her family appealed for people with the blood type B positive to come forward as she was in need of blood donations for a bone marrow operation.

Two Free Tickets Available To See JLS

June 29, 2011

http://twitter.com/#!/AsianswithMS/status/85754107968749568

Joint Committee On Human Rights Take Evidence On Independent Living For Disabled People

June 28, 2011

I’ve just found out about this. The link will take you to the full discussion on Parliament TV, which finished a short while ago.

More Details Of RADAR’s MP Dialogue Scheme

June 28, 2011

Meeting your MP can be a daunting experience at the best of times.

Particularly if you are disabled.

MPs like to talk about reaching out to all sections of the community but it is easy to feel, if you are in a wheelchair or have some other disability, that it does not include you.

And with so many disabled people worried about looming welfare reforms, there has probably never been a better time for a scheme that aims to get more of them face-to-face with their elected representatives.

The disability campaign group Radar runs an awareness scheme every year to encourage disabled people from across the UK to meet their MPs and raise the issues that matter to them – 51 MPs are signed up to the “MP Dialogue” scheme.

The group advises people about preparing for meetings with their MP, tells them what exactly it is that MPs do and helps Parliamentarians understand their disabled constituents’ needs.

So far this year about 70 individuals or groups have requested more information.

Among them is Elaine Precious, who is taking a group of people with learning disabilities to meet two of her local Conservative MPs – David Gauke and Mike Penning – next month at a football club in Berkhamsted, Hertfordshire.

Elaine works for Dacorum Mencap – a local charity which supports people with learning disabilities and thinks meeting more disabled people in person will give MPs a better understanding of the issues that affect them.

“The vast majority of people actually don’t really have an inkling about what it is like to live with a disability, the impact it has on every aspect of your life, particularly the poverty it causes within families,” she says.

“People with learning disabilities are not likely to go to their MPs’ surgery with an issue – they may have a family member who will go on their behalf, but they are not going to think: ‘I’m going to speak to my MP about that'”

Verbally abused

She said her group would raise issues with the MPs that she might miss – from the effect of bus routes closing to being verbally abused in the street, they would be able to discuss problems that confronted them on a daily basis.

Other issues like local hospitals closing also caused “incredible difficulties” for them, she added – as many will suffer from related health conditions like epilepsy, which will occasionally require hospital treatment.

“Their issues about the local community are probably quite different from the general population’s issues – it’s quite important they get to speak to their MP about what they feel.”

She said aspects of the government’s welfare reforms were likely to be raised – such as the new work capability assessment for people on incapacity benefit which questions benefit claimants about what they could do, with a view to seeing if they are potentially fit for work.

“Sometimes they will way to somebody: ‘I can do this’ and that and actually they can’t,” she said.

Many of her members would like paid employment and quite a lot do voluntary work, she said, but it was difficult for them to secure paid work.

“On the one hand they do want to work but on the other hand if not able to get a job, they rely on these disability benefits.”

Benefit changes

Elaine has her own issue to raise with Mr Gauke and Mr Penning. Her son Sam is seriously disabled, and she is worried about proposed changes to the Disability Living Allowance.

Last year Sam, who has severe learning disabilities, moved out of her home in Hertfordshire into full-time residential care about 20 miles away.

She uses the “mobility” part of his DLA – about £50 a week – to pay to hire a car which she can use to take him to appointments and visit him regularly.

But the government had proposed axing that part of the allowance for people in residential care – arguing that local authority contracts with care homes should cover residents’ mobility needs.

Elaine says the allowance gives her access to a reliable car that is well maintained. She is worried that, on a low income, she would not be able to afford a decent car and she and her son could be left stranded in the event of a breakdown.

“The thought of being stuck with my son, who is like a two-year-old but he’s 20, on the side of a road – it’s horrifying really.”

She has already raised the issue with her MP in a letter – and got one back – but is hoping for a more “personal” response when she visits Mr Gauke and Mr Penning in July.

The government announced the proposal in last year’s spending review – aimed at saving £135m by 2014-15.

It has since said the policy will be rolled into a wider review of Disability Living Allowance – which is due to be replaced with a new benefit – the Personal Independence Payment.

A spokesman said while care homes were obliged to provide mobility support – a study had shown provision was “patchy” and it had never been the intention that people would be left without their mobility needs being met.

The Arthritic Aviator

June 28, 2011

A disabled women from Lincolnshire is hoping to qualify as a pilot after winning a scholarship to an American university.

Helen Saxon-Jones, from Scampton near Lincoln, was diagnosed with rheumatoid arthritis at the age of 10, and manages to walk despite having no hip joints.

She been selected by Purdue University in Indiana and plans to post her progress on her arthritic aviator website.

The six-week course is being funded by the Red Arrows Charitable Trust, through Flying Scholarships for the Disabled.

Video Of Paralysed Cat Swimming

June 28, 2011

Sounds like the subject of a virus email, doesn’t it, readers? But it’s purr-fectly true! As a cat lover, this made me smile, and as London slowly recovers from yesterday’s heatwave, I thought you might like to watch this paralysed cat having hydrotherapy.

Ryan Cleary Freed On Bail Yesterday

June 28, 2011

A man accused of hacking the Serious Organised Crime Agency’s website has been released on conditional bail.

Ryan Cleary, 19, must observe a curfew between 2100 BST and 0700 BST, be electronically tagged and only leave the house with one of his parents.

The teenager, from Wickford, Essex, is not allowed to access the internet or possess devices which can go online.

He was arrested as part of a Scotland Yard and FBI probe into online hacking group LulzSec.

The group claims responsibility for hacking attempts on Soca, the US Senate and the CIA.

Flooding target

Mr Cleary is alleged to have set up a distributed denial of service (DDOS) attack on the Serious Organised Crime Agency (Soca) on 20 June.

A DDOS attack typically involves flooding a target website with data, in an attempt to overwhelm it so it cannot serve its legitimate users.

His mother, Rita spoke at Southwark Crown court on Monday to say she would agree to any bail conditions imposed on her son, who has been diagnosed with Asperger’s syndrome since his arrest.

Describing him as “my life”, she said: “I’m aware that I’m his best friend as well as his mother, because he’s reclusive.”

After the hearing, Mr Cleary’s solicitor, Karen Todner, issued a statement on behalf of her client saying he was very relieved to be granted bail “and to go home to his mum, his cats and his books”.

She continued: “Ryan has last week at court been diagnosed with Asperger’s syndrome, which is a form of high functioning autism.

“He will now be provided with the professional support that he needs. His obvious intelligence can now be channelled into a worthwhile pursuit.”

The case is due to be heard again at Southwark Crown Court on 30 August.

Charlotte Young

June 28, 2011

A care home charity has been fined £65,000 over the death of a 40-year-old woman, who was found trapped between a mattress and a bed rail.

Charlotte Young, who had Huntingdon’s disease, was found unconscious in June 2008 at the Sue Ryder Care Home in Bamber Bridge, Lancashire.

Sue Ryder Care, admitted breaching health and safety legislation.

The charity, whose head office is in Suffolk was also ordered to pay £35,000 costs by Preston Crown Court.

The Health and Safety Executive (HSE) found the home at Cuerden Hall failed to manage the risks associated with the equipment used on Mrs Young’s bed.

As her condition made her prone to involuntary movements, a specialist cushioning system was used along with the bed rails but the court heard the equipment was not used correctly by staff, creating a risk.

The HSE investigation found Mrs Young was able to knock her bed rail out of position because it was not the right size for her bed.

‘Care warning’

This created a gap between her bed rail and mattress in which she became trapped and was unable to breathe.

Speaking after the hearing, HSE Principal Inspector David Shorrock said: “A mother has lost her life because of a systemic failure on the part of Sue Ryder Care at Cuerden Hall.

“Because the home was oblivious to the risks associated with this kind of equipment, they had no proper risk assessments in place. The maintenance of the equipment was also poor and staff were not trained to spot any problems which could have arisen in Mrs Young’s case.”

Sue Ryder Care, of King Street in Sudbury, Suffolk, is one of the UK’s largest providers of palliative care.

A statement from Sue Ryder Care said staff were “deeply saddened” at Charlotte Young’s death.

It said the organisation had amended policies at its homes across the country, implemented new training for staff and had introduced an annual bed replacement programme.

Tongue-Steered Wheelchair Invented

June 28, 2011

There is now great hope for people who have suffered spinal injuries, with the invention of ­a new wheelchair that can be steered by the tongue.

It may sound far-fetched but the prototypes work and paralysed patients like using them and find them easy to navigate.

We usually only hear of severe spinal injuries causing paralysis ­from the neck downwards when someone has a horse-riding accident, like Superman actor Christopher Reeve, or when a rugby star suffers a broken neck in the boiler house of a rugby scrum.

In the UK, 10 to 15 people in every million have severe spinal cord injuries and it is estimated there are about two to three new injuries per year.

In addition, millions more have some form of paralysis brought on by conditions including motor neurone disease, cerebral palsy, multiple sclerosis and stroke.

There have been various options for paralysed wheelchair users, such as the sip and puff technology used by Christopher Reeve.

This allowed him to steer his chair by breathing through a straw.

Bioengineers at the Georgia Institute ­of Technology in America wanted to ­find a technique that would be more aesthetically pleasing and more intuitive, with better control and greater flexibility.

After five years’ work, they have come up with the tongue-drive system.

It is a magnetic stud fitted into the tongue – just like a tongue piercing – to steer a wheelchair.

To operate the system, users wear a headset with sensors that pick up magnetic forces from the tongue. So, for instance, moving the tongue to the mouth’s upper left corner moves the wheelchair forward.

The use of the tongue is ingenious. First of all, it does not tire easily. It is packed with strong muscle. Secondly, it is usually spared when the neck is broken because the nerves to the tongue are supplied from the brain, not from the spine, meaning that the tongue is nearly always spared after a spinal injury.

Next time you see somebody wearing a tongue stud – a symbol ­of rebellion and non-conformism ­– remember that exactly the same device can be used for therapeutic reasons, with huge benefits.

Easyjet Refuses Declan Spencer, 12, Because Wheelchair Is Too Heavy

June 27, 2011

A Leicestershire mother has been considering legal action after a budget airline refused to carry her disabled son.

Alexandra Spencer, from Syston, said she was told by Easyjet that it will not take her 12-year-old son on a flight to Cyprus because his specialised 95kg wheelchair is too heavy for baggage handlers.

Declan Spencer, who is terminally ill with muscular dystrophy, has flown before without restriction with other airlines.

In a statement Easyjet said it regularly carried powered wheelchairs which have parts weighing less than 60kg each, to protect the health and safety of staff.

Woman Admits Saying ‘Bang, Bang’ To Pc David Rathband

June 27, 2011

A woman has admitted saying “bang, bang” to the policeman blinded by killer gunman Raoul Moat.

Kelsey Donkin, 22, made the comment when Pc David Rathband arrived at Newcastle Crown Court for the trial of two men accused of helping Moat.

Donkin, of Stamford Avenue, Sunderland, had originally denied the public order offence and her trial was due to start when she changed her plea.

She is due to be sentenced at Newcastle Magistrates’ Court later.

She was arrested after making the comment and a gun gesture with two fingers behind the officer’s back as he attended Newcastle Crown Court on 2 March.

She was accused of using threatening words and behaviour to cause Pc Rathband distress.

The unarmed Pc lost his sight after Moat shot him in the face twice, 24 hours after Moat murdered his ex-girlfriend’s new lover and seriously injured her.

Minutes before Pc Rathband was shot in the face, Moat had called Northumbria Police and said he intended to target other police officers.

Following the shootings, a manhunt started for Moat. The 37-year-old died after a six-hour stand-off with police in Rothbury, Northumberland, on 10 July 2010.

Karl Ness, 26, and Qhuram Awan, 23, were found guilty of helping Moat. Ness was given a 40-year minimum term, and Awan must serve at least 20 years.

A Request From Shape Arts

June 27, 2011

http://twitter.com/#!/kirstybuck/status/85305902747484160

Happy Birthday Helen Keller!

June 27, 2011

http://twitter.com/#!/DeafblindUK/status/85292306525208577

A Request For Help From Anne Novis MBE And The Broken Of Britain

June 27, 2011

http://twitter.com/#!/BrokenOfBritain/status/84258540474216449

Official Website Of Special Olympics 2011

June 27, 2011

For anyone who is interested in the Special Olympics 2011, the event’s official website is here.

LulzSec Hacking Suspect Ryan Cleary Has Asperger’s Syndrome

June 26, 2011

A 19-year-old charged with hacking the website of the UK Serious Organised Crime Agency has been diagnosed with Asperger’s syndrome, a court has heard.

Ryan Cleary, from Wickford, Essex, was arrested as part of a Scotland Yard and FBI probe into online hacking group LulzSec.

His counsel told City of Westminster Magistrates’ Court he suffers from the form of autism, along with agoraphobia.

He was granted bail, but remains in custody after prosecutors objected.

Ben Cooper, defending Mr Cleary, said he was concerned the alleged hacker would have to remain in custody over the weekend.

The court was told he is of high intelligence but has difficulty interacting with other people.

But prosecutors refused to reconsider their bail appeal.

Mr Cleary is alleged to have set up a distributed denial of service (DDOS) attack on the Serious Organised Crime Agency (Soca) on 20 June.

A DDOS attack typically involves flooding a target website with data, in an attempt to overwhelm it so it cannot serve its legitimate users.

‘Botnet conspiracy’

He has been accused of attacking the website of the International Federation of the Phonographic Industry in November 2010.

And Mr Cleary also allegedly attacked the British Phonographic Industry’s website in October.

He was charged under the Criminal Law Act and Computer Misuse Act by the Met Police’s e-crime unit.

The charges against Mr Cleary include conspiring with other unknown people on or before 20 June to construct a botnet – a collection of hijacked home computers – to conduct distributed denial of service attacks.

He is also charged with making, adapting, supplying or offering to supply a botnet, intending that it should be used to commit, or to assist in the commission of a distributed denial of service attack.

The bail appeal will go to a Plea and Case Management Hearing at Southwark Crown Court on 30 August.

If Mr Cleary wins bail he will be banned from having any possession which can access the internet.

No internet access will be allowed at his home, which he will be prohibited from leaving without his mother, Rita Cleary.

Mr Cleary has not entered a plea to any of the charges.

Radio 5 Live Discussion On Mocking Disability

June 25, 2011

Nicky Clark ‘s People Not Punchlines campaign was mentioned on Radio 5 Live’s Your Call show yesterday,  as part of a discussion on mocking disability.

Winterbourne View Closing Today

June 24, 2011

I’m a bit late reading this, so maybe it’s already closed. Anyway, great news!

A residential hospital where alleged abuse was secretly filmed by the BBC’s Panorama will close later.

Patients at Winterbourne View, near Bristol, have been transferred after the programme showed residents being pinned down, slapped and taunted.

Patients at the unit, which is run by the firm Castlebeck, were filmed by an undercover reporter.

A Castlebeck spokesman said the company said it wanted to ensure patients were “safely transferred”.

After the programme was broadcast Castlebeck apologised and launched an internal investigation.

A number of people have been questioned by police and released on bail following the programme.

The government has said a serious case review into the alleged abuse at the residential hospital had been set for July.

Meanwhile, a group of 86 organisations has called for action to stop a repeat of the alleged abuse.

They have written to the prime minister asking that the use of residential hospitals be stopped.

David Congdon, from Mencap, one of the groups behind the letter, said people should not be placed in such facilities.

A spokesperson from the Department of Health said a serious case review would consider the points raised.

“All the issues and actions outlined in the letter will be considered fully in the Department of Health review.

“We need the full facts of what happened before deciding what actions are needed next.”

I’m Not Laughing

June 24, 2011

Read the letter that started a campaign and is helping to make Bolton a better place.

Wheelchair Wimbledon 2011

June 23, 2011

Lucy Shuker and Jordanne Whiley will become the first all-British pairing to compete in the ladies’ wheelchair doubles at Wimbledon this year.

British number one Shuker has reached the final for the past two years partnering Australia’s Daniela di Toro.

Whiley, 19, the British number two, makes her debut at the All England Club, having already played her first Australian and French Opens in 2011.

Dutch duo Esther Vergeer and Sharon Walraven defend the ladies’ title.

In the men’s competition, Robin Ammerlaan of the Netherlands and Stefan Olsson of Sweden return to try and retain their Wimbledon crown.

The pair recently finished as runners-up at the French Open at Roland Garros for the second successive year.

Reigning US Open champions and Doubles Masters winners Maikel Scheffers and Ronald Vink are chasing their first Wimbledon crown as a pairing.

Vink already has two Wimbledon titles – he partnered Ammerlaan to victory in 2007 and 2008.

Beijing Paralympic Games champions Stephane Houdet and Michael Jeremiasz pair up at Wimbledon for the first time since winning the title in 2009.

The men’s doubles wild card has been awarded to Dutchman Tom Egberink, who makes his Wimbledon debut, and top ranked singles player Shingo Kunieda of Japan.

Kunieda partnered compatriot Satoshi Saida to victory at Wimbledon in 2006.

Belgium’s Annick Sevenans and Dutch partner Marjolein Buis get the wild card in the ladies doubles.

The wheelchair doubles competition at Wimbledon runs from 1-3 July.

Special Olympians Prepare For Athens 2011

June 23, 2011

Great Britain’s Special Olympics squad members have been overwhelmed by the welcome they have received ahead of Saturday’s opening ceremony in Athens.

The 151-strong squad of athletes will compete in 17 of the 22 sports during the event which closes on 4 July.

The team are acclimatising on the island of Skiathos in preparation for the 13th World Summer Games.

Head of delegation Gordon McCormack said: “The squad has been blown away by the reaction of local people.”

More than 7,000 competitors will take part in the Special Olympics, one of the biggest sporting events of 2011 for people with learning disabilities.

Preparation for Great Britain’s squad includes time for personal development, so athletes and coaches have taken time out to visit the Monastery of Evangelistria and learn Greek dancing on the island where the movie Mamma Mia was filmed.

The team travelled to Greece without significant government funding, and each competitor has had to raise £2,000 to take part.

But the welcome in Greece has helped to generate a feeling that the tide is turning. Behind the scenes in London, dialogue will continue this summer about reviewing lottery funding.

McCormack believes awareness is growing, and maybe even attitudes are changing.

“People have been standing up and applauding us every step of the way and that sort of spirit really does impact on the confidence and team spirit of everyone concerned,” he added.

”Hopefully we can benefit from this new-found support and give our athletes the profile and recognition that they truly deserve. A team returning home to Heathrow on 5 July laden with medals and happy faces will play a big part in that.”

The target of winning medals is highly significant for the competitors but the importance of achieving personal goals irrespective of opponents is a key part of the Special Olympics ethos.

In this sense, learning disability sport may not be elite sport but so far in Greece the squad members appear to feel valued and inspired.

The Great Britain team will compete in aquatics, athletics, badminton, basketball, bocce, bowling, cycling, equestrian, football (including unified football), golf, artistic and rhythmic gymnastics, judo, kayaking, powerlifting, sailing, table tennis and tennis.

Kate Allatt

June 23, 2011

When Kate Allatt woke up and saw it was 10 minutes to three in the afternoon, she worried about who was picking the kids up from school.

Then she wondered why there was a tube connected to her mouth.

And then, in state of panic and pain, she discovered she could not move a muscle.

“The only thing was my eyelids – I cried tears, but no noise.”

Kate, now 40, had been in a medically induced coma for three days. The tube was attached to a life-support machine, and her lack of movement was the result of one of life’s most terrifying conditions: locked-in syndrome.

After suffering a stroke, she was left cognitively sound – fully aware of what was going on around her – but no longer had the ability to move any part of her body.

“Everything hurt. The thing with locked-in syndrome is you have all the symptoms of paralysis, but all the pain of feeling everything.”

She could not see how her life could possibly continue. To make matters worse, those around did not at first realise she was mentally aware.

“I wanted a pillow over the head. I hated it.

“My life was nothing like it was, and I was going to be for ever an observer in my kids’ life. I just wanted to be put out of my misery.”

Another migraine

Her ordeal started with a fairly innocuous headache complaint just weeks before.

Mark, a husband fed-up with his wife’s complaints of constant migraines, took Kate to see a doctor.

Upon arrival, the clues about the seriousness of Kate’s condition were starting to become apparent – symptoms that would eventually lead to a massive stroke caused by a blood clot to her brain stem.

“As he parked the car, I checked into the nurse and started slurring. She immediately sent me to A&E.

“They sent me home with the migraine pills and then five hours later from resting in my bed, I went downstairs – I said to my husband, ‘What’s happening to me?’, of which he heard gobbledygook.

“And then I collapsed on the floor.”

Until her stroke, Kate ran her own digital marketing company, and was gearing up for a once-in-a-lifetime trip to climb Mount Kilimanjaro.

Doctors now said the mother-of-three, a keen runner, had a 50-50 chance of surviving.

Even if she did make it through, she had little chance of regaining any part of her life.

Yet soon the first breakthrough came – thanks to husband Mark and best friend Alison.

“A week after my stroke, they were conscious I was very bored. They wanted me to watch some TV.

“They put something on and I blinked very ferociously as if to say ‘I don’t want to watch this’.

“Then, they asked me a question that required a yes/no answer, i.e one blink no, two blinks yes.”

By week eight, Kate had another glimmer of hope.

“I got a tiny flicker – less than half a millimetre – in my right thumb.”

‘Say my name!’

Other than her eyelids, it was the first movement of any kind Kate had experienced since her stroke.

But she didn’t let it excite her too much – after all, unknown to her, Mark had been told she would almost certainly never walk again.

But as Kate’s movement slowly came back to her, she found she was able to write, and began using Facebook to communicate with her friends and the wider world.

To be able to communicate again by using the internet was liberating, and soon, egged on by her son Woody and in defiance of all medical assessments of her condition, Kate regained the ability to speak.

“I was in the middle of writing some words down for him to read because I couldn’t talk.

“He said to me ‘Mummy, don’t write my name, say my name. Say my name’!”

“I just said, ‘Oody!’ It was an incredible moment for them because they all cried. They went away, I practised all weekend in the way I did with all my exercises.”

Her weekend of speech practice paid off, to the delight of her favourite nurse, Oliver.

“On Monday morning Oliver came into my room with a box.

“He said, ‘Morning Kate!’, and I shouted back, ‘Morning Oliver!’ – not as clear as that, but nevertheless it was there. He dropped his box, he cried, and he said, ‘It’s moments like this I came into nursing for’.”

Walking away

Kate’s relationship with Oliver strengthened, and she confided in him that she intended to walk her way out of the ward that had been her home for so many weeks.

Not only that, she told him that a year on from her stroke, she wanted to be able to do again what she had always loved – running.

“He rolled his eyes as if to say, ‘Of course you will Kate, yeah right, whatever’.

“On 29 September, I walked off the ward. On 6 Feburary this year, a year after my stroke, I ran 20 metres. They’re both on YouTube.”

After leaving hospital, she and husband Mark decided to renew their wedding vows in front of more than 200 family members and friends.

“I cried like a baby coming down the aisle.”

Now, never shy of a challenge, Kate wants to run a full mile by Christmas.

Her friends, never wavering in their support, have nominated her to be a torch-bearer for London 2012 in her home city of Sheffield – an experience that even the old Kate would never have even dreamed of.

When You Use Disablist Language, Imagine You Were Being Racist

June 23, 2011

Says Nicky Clark in this piece for the Guardian Joe Public blog. It goes back to the treatment of disabled people during the Holocaust, which seems shocking today.

Able Life

June 22, 2011

I spoke to Able Radio as usual this week, this time about my views on Phil Davies MPs comments about the minimum wage. You can hear what I said here if you miss the show, which airs tonight at 8pm on www.ableradio.com.

Iain Wilson

June 22, 2011

As the Royal College of Physicians begins a review of the diagnosis and care of people in a vegetative state, the BBC asks whether the current system is failing patients and their families.

As a young, proud, super-fit marine, it is a life he never would have wanted.

Now in his 50s, all that is left of his adventurous past are the photographs on the wall.

Iain Wilson is in a vegetative state and relies on his mother Gabrielle for everything.

A former nurse, the diminutive 83-year-old wakes at 7.30am every day to begin a care regime which would challenge someone half her age.

She has not had a holiday for more than 21 years.

“I leave him in the bath about 20 minutes, take him out all dripping wet and helpless, put him onto the bed and dry him, and then I cut his nails,” she says.

“I have to do his feeds and then, last thing at night, see he’s alright, move him about and put cushions all around him to stop him getting bedsores.

“Then I have a last look at him at quarter to one in the morning, and if he’s sleeping, I’m fine then and I go to sleep myself.

“If he’s got a chest infection or anything wrong, I’ve got a baby alarm and I can hear him.”

Iain is thought to be the longest surviving vegetative state patient in the UK, an unenviable record.

The former Royal Marine, who also served in the Foreign Legion, suffered severe brain injuries after being knocked over by a car in 1989.

The damage left him blind, incontinent and unable to move or communicate. He is fed through a tube in his chest.

Mrs Wilson would not want anyone else to care for her son, but after suffering a heart attack and conscious of her advancing years, her biggest worry is what will happen to her son when she dies.

“I think about it all the time. I just have to turn my mind off because it affects me so much,” she says.

“He will not be looked after properly. I don’t like to say it, but it’s true.

“He’ll lie there and suffer, unable to moan or groan or call for help and they won’t notice.

“Picture yourself in that situation. It’s awful.”

‘Traumatic’

This is just one of a number of heartbreaking dilemmas faced by the families of those left in a vegetative state.

It is difficult to find precise figures for the numbers affected, but experts believe there could be as many as 5,000 people in the UK enduring what has been described as a “living death”.

And because of advances in medical science meaning that more people survive what would previously have been fatal injuries, the figures are set to continue to grow.

Expert clinicians have highlighted a number of concerns about the care of vegetative state patients and their families.

They believe some are being misdiagnosed as a result of inconsistencies in assessment across the country.

Watch: Helen Watson on letting her son die

There is also evidence families are not routinely being told of all the options open to them.

Since 1992, following the landmark case of Hillsborough victim Tony Bland, it has been possible for an application to be made to the Court of Protection for permission to end a vegetative state patient’s life by withdrawing food and hydration.

This is done under sedation to ensure the patient feels no pain or distress.

There have been a total of 43 applications since 1992, all of which have been granted.

Professor Derick Wade, consultant in neurological rehabilitation, believes it is crucial to inform families of this and all of the options open to them at every stage.

But he has told the BBC of cases where families have been kept in the dark for years because of the religious, cultural or moral beliefs of the clinicians involved.

“For some clinicians [the withdrawal of nutrition to allow a patient to die] is not morally acceptable. So they do not discuss the issue with the family.”

This happened to 53-year-old Helen Watson from Leicestershire, whose sixteen-year-old son Christopher was severely injured in a road accident on his way back to boarding school in 2006.

The family only learned they could apply to the courts years afterwards when an expert was brought in to assess Christopher’s accident compensation claim.

Professor Lynn Turner-Stokes is chair of the Royal College of Physicians working party which has been set up to review the issues around the diagnosis and care of vegetative patients.

She is concerned that even when families have made an informed decision to withdraw treatment and allow their loved-one to die, the court process involved can be beset with lengthy, yet easily avoidable, delays.

“I think it’s very traumatic for the families, it’s quite a long, drawn-out process.

“At the current time there is not a great deal of clarity about what the process should be, for example there isn’t a clear protocol for what should have been done prior to approaching the court,” she said.

“Personally I’d like to see some clarity about what the pathway is. I think it could help streamline things.”

‘Love and devotion’

For Tudor David, 65, the delays involved in an application to the court to allow his wife Diane to die after a road accident left her in a vegetative state proved too much.

Initially told the court process would take six months, the family was still no closer to a decision from the court 18 months later.

Mr David’s family believe he felt his wife had suffered enough. In December 2008 he took her out of hospital, parked their car in the garage of their home and left the engine running.

The devoted couple died together from carbon monoxide poisoning as a result of what a coroner referred to as an act “solely motivated by devotion and love”.

The Royal College of Physicians’ review began in May 2011, and is expected to last at least 18 months.

Professor Turner-Stokes hopes the team’s work will ultimately help improve the process which the David family and others believe has let them down.

File on 4 is on BBC Radio 4 on Tuesday 21 June at 2000 BST and Sunday 26 June at 1700 BST. Listen again via the BBC iPlayer or download the podcast.

Don’t Tell The Bride…

June 22, 2011

http://twitter.com/#!/scope/status/83230954642083840

UK Extradition Rule Overhaul Call

June 22, 2011

The UK’s extradition arrangements with the US and the EU must be overhauled to better protect rights of individuals, a committee of MPs and peers is arguing.

It said safeguards in US cases were “inadequate”, more evidence was needed to justify requests and judges should be able to refuse them if they were not in the “interests of justice”.

High-profile extradition cases, such as that of computer hacker Gary McKinnon, have fuelled demands for a reappraisal.

Ministers are reviewing current rules.

Home Secretary Theresa May ordered the review last year to determine whether the UK’s extradition arrangements with the US – in place since 2003 – were “balanced” following a spate of controversial cases.

In a new report, the cross-party Joint Committee on Human Rights said tougher safeguards were needed to ensure individuals’ rights to a fair trial and to protect their private and family lives.

Evidence based

It has called for the the 2003 US-UK Treaty to be “urgently renegotiated” to enable the government to refuse extradition requests if UK prosecutors have decided against beginning proceedings at home.

Requests should only be considered if the US authorities provide prima facie evidence that the suspect has a case to answer to prevent people being sent to face trial abroad on “speculative charges”, it says.

Although provisions already exist for judges to deny extradition if an alleged offence took place wholly or legally in the UK, the committee said these were not being put into practice.

The committee also calls for the government to renegotiate the terms of the European Arrest Warrant, which came into force in the UK in 2004 to speed up extradition requests between EU member states.

It says there are “serious problems” with how the system is operating, that some warrants have been issued disproportionately and for relatively minor offences.

The BBC’s Home Affairs Correspondent Danny Shaw said the committee believed judges did not have enough discretion about how to act in such cases.

Hywel Francis, the Labour MP who chairs the joint committee, said human rights provisions in the Extradition Act were “clearly inadequate”.

“The government should spell out detailed safeguards, he said.

“A most appropriate safeguard would require the judge in an extradition case to consider whether it is in the interests of justice for the individual to be tried in the requesting country.”

‘Family separation’

The home secretary is currently reviewing the case of Gary McKinnon, whom the US authorities want to extradite for hacking into Pentagon computer systems in 2001 and 2002.

Mr McKinnon, who suffers from Asperger’s Syndrome, faces a potential sentence of 60 years in jail if convicted and campaigners say such a vulnerable person should not face trial in the US on medical grounds.

In its report, the committee concluded that the power of the home secretary to refuse extradition to non-EU countries should not be extended but it should be up to judges to adequately protect an individual’s rights.

One leading extradition lawyer said calls for change to a “draconian” system were long overdue.

“Any changes to our extradition procedure should take place without delay,” Michael Caplan, from solicitors Kingsley Napier, said.

“We must not lose sight of the fact that we are dealing with the freedom of individuals. If extradited, they are separated from their families, often held in custody in a foreign jurisdiction, alone, many miles from home.”

The last Labour government resisted calls for a review of extradition laws, saying they struck the right balance between liberty and security and other countries had to meet the same evidence thresholds as the UK.

Two Special Schools Get Council Funding

June 22, 2011

Two schools for pupils with special needs in Herefordshire will receive £7m to improve their buildings.

Herefordshire Council has decided to use a grant from the government for capital projects at two schools.

The plans will fund an extension and remodelling of Blackmarston Special School in Hereford.

They will also replace a temporary Language and Communication Centre at Hampton Dene Primary School with a permanent building.

After the Building Schools for the Future programme was aborted by the government, local authorities were given a capital grant to spend on improving buildings for 14 to 19-year-olds and for children with special educational needs.

In Herefordshire, this amounted to £7.34m.

Following consultation with schools and colleges, it was agreed that Blackmarston Special School and Hampton Dene Primary School were a priority and should go ahead as soon as possible.

The investment at Blackmarston School will extend the school’s accommodation so that it can meet a “growing increase” in demand for specialist provision for children with complex needs, largely in the South Wye area.

It is anticipated that the extended facilities will increase the number of pupil places available from 60 to 80.

‘Very poor condition’

The county’s Language and Communication Centre based at Hampton Dene Primary School, in Tupsley, caters for about 20 children with very specific needs that the council said could not be met well elsewhere.

A council spokesman said the current accommodation was in “very poor” condition and needed to be replaced.

Councillor Philip Price, cabinet member for education, said: “The number of children with special educational needs is growing and we need to make sure we are able to meet this demand.

“In Herefordshire our mainstream schools are fully inclusive, but some children need specialist support only available at dedicated schools or centres.”

The two schools will receive funding of £4.75m each.

In addition a sum of £1m has been earmarked for new facilities at Leominster Primary School and £1.25m has been allocated to Barrs Court Sixth Form and Adult Social Care hub.

Places Like Winterbourne View Should No Longer Exist

June 22, 2011

Says David Brindle in this post on the Guardian’s Joe Public blog.

People Not Punchlines

June 21, 2011

I’ve been sent the press release below by Nicky Clark.

As a disability rights campaigner and mum to two disabled girls

I’m launching a new campaign on 23rd June as part of Learning Disability Week, to have disability hate speech recognized under law in line with current legislation and protection.

 

Currently as the law stands it is illegal to communicate in a manner which is threatening abusive or insulting and intended to harass alarm or distress someone on the following grounds only:

 

Colour, race, nationality, ethnic or national origin, religion, or sexual orientation.

 

Disability remains exempt from this list and therefore disabled people are routinely harassed with no right of redress under law.

 

The language we use everyday underpins the rise in targeted violence and abuse towards disabled people.

 

Professor Ian Rivers from Brunel University conducted a survey of 185 children who had bullied others. He concluded that difference is a primary motivating factor.

 

In gathering information for this campaign I contacted Professor Rivers and asked him for his opinion on the issues around bullying and disability.

 

He explained “Children with Special Educational Needs and Emotional Behavioural Difficulties are often the target of bullying and ridicule. Where there is a hierarchy, teachers for example are bound by their policy on bullying. However in the cases of unofficial hierarchy, peer on peer bullying, the problem is rarely addressed”

 

Recently these behaviours have transferred from the playground to the television. The comedian Frankie Boyle also finds it acceptable to use disabled people as the source material of his “jokes”, but as distressing and discrimatory as many disabled people and carers find his “humour”, we as a society allow these comments to pass unchecked.

 

This campaign is not an attempt to curb free speech but rather to highlight the growing trend towards the normalizing of hate speech in respect of disabled people.

 

David Congdon, head of campaigns and policy at learning disability charity Mencap, said:

 

“As an organisation we strive to change the negative attitudes towards people with a disability in our society which is why we fully support this campaign. We believe that use of offensive language contributes to a culture where harassment and bullying of people with a learning disability is all too common.

 

 

“It is estimated that as many as 9 out of 10 people with a learning disability are verbally harassed or exposed to violence due to their disability. The tragic deaths of Fiona Pilkington and Francceca Hardwick and David Askew are just two examples of where name-calling and low-level harassment was allowed to escalate into sustained abuse with fatal consequences.

 

“Ignorant use of language contributes to a culture where people with a disability, and their families, continue to be regularly subjected to verbal and physical abuse. It is as bad as using racist or homophobic language and this needs to be recognised.”

 

Fiona Pilkington who killed herself and her disabled daughter had the word “retard” used against her and her family routinely.

The gang who hounded her, literally to death would stand outside her house and yell, ”We can do whatever we want and there is nothing you can do about it.”

 

As a campaigner and as a mother, I’m fighting to ensure that this ceases to be true. Therefore I’m calling on MP’s to amend the existing hate speech law and ensure that disabled people are rightfully included in this vital legislation.

 

Nicola Clark

 

For more information or to request an interview please contact Nicky Clark on

peoplenotpunchlines@gmail.com

Twitter @dontplaymepayme

Previous campaigns- www.dontplaymepayme.com

Clare Forbes

June 21, 2011

Clare Forbes lost both her legs as a result of meningitis, which left her in a coma for six months.

But that has not stopped her completing the London and New York marathons, the Great North and Great South runs and hiking across Cuba.

Against medical predictions, she now also has two children.

Blue Lamp Foundation Makes First Award

June 21, 2011

The policeman blinded by gunman Raoul Moat has made the first award from a charity he set up to help injured emergency service personnel.

Pc David Rathband, 43, launched his Blue Lamp Foundation after being shot in the face by Moat a year ago.

The charity, which has raised about £130,000, awarded £2,500 to paramedic John Eames, whose legs were shattered when a lorry hit his ambulance.

Mr Eames, 38, has been unable to walk since the incident in February.

Mr Eames cannot return to the home he shares with wife Sarah in Burton, Staffordshire, because it is not suitable for his wheelchair. The award will help him adapt the house.

‘Living proof’

His ambulance was hit by a Polish lorry driver who was driving on the wrong side of the road.

Mr Eames said: “It’s a privilege to be the first recipient of the charity. It will finally let me go home and make my life so much easier.

“There have been a lot of lows and highs since I was injured and this is definitely one of the highs.”

PC Rathband said: “I’m absolutely elated that we have made our first award.

“This is the culmination of what we set out to do. John is living proof that my foundation is here to help.”

As well as Pc Rathband, Moat also shot his ex-girlfriend and killed her new boyfriend before shooting himself after a manhunt.

Parents Fighting Closure Of ‘Lifeline’ Day Centre

June 21, 2011

Clients of a day centre in Bradford say they are “going to fight” council plans to close the service.

Bradford Metropolitan District Council is considering closing Whetley Hill Day Centre in Manningham, which provides care for disabled people.

Families who use the centre described it as a “lifeline”.

The council claimed it must consider the closure to save £9.1m from its adult social care budget over the next year.

Care consultation

Linda Howard, whose son Adrian has cerebral palsy and attends the centre each weekday said: “From day one you’re battling and it should be becoming easier.

“It’s not, it’s getting harder and this is just putting the icing on the cake where they’re proposing to close Whetley Hill Day Centre which is a lifeline to us.”

The centre was built 35 years ago and provides care, activities and a social life for about 100 people, with many saying it has given them a “new lease of life”.

Moira Wilson from Bradford Council said a consultation was under way to look at possible changes to current services.

“I realise it is difficult for people when they’ve been very used to going to a centre but I would like to reassure people and their families that their needs will continue to be met and we will make sure those are personal and supportive of them.”

The Number 3 Mystery Book

June 21, 2011

I recieved an email from Chris Pink, the author of this new e-book for teenagers, asking for it to be promoted.

Barney Delaney is 13. He also has Cherubism – the rare genetic condition which disfigures the face and causes all kinds of problems. On top of this, he has a mother who is often tired and unwell and a father who is nearly always away working.

It’s not easy being Barney Delaney, you know.

But now forget the negative things for a moment, because in this boy’s world, all that’s secondary: for Barney, you see, nothing in the world matters as much as Cryptozoology – the search for animals which are considered to be ‘legendary or otherwise non-existent by mainstream science.’ So, when the excitable enthusiast finds himself confronted by something truly unbelievable, he’s 100% certain that his dream of becoming the world’s number 1 Crytpozoologist has just made a massive step forward!

Then things turn weird…

…What starts out as a simple mission for Barney and his best friend Wonky soon transforms into a series of bizarre twists and obscure mysteries – things which are embroiled and entwined somehow with the always difficult adults. Not to mention Wonky, who is acting strange and worryingly girlish. But then, he isn’t surprised by that. Would you be if you were a 13 year old boy?

Not that Barney Delaney would ever let these obstacles stop him! No, he’s going all the way, make no mistaking…and by the time he’s finished everything will make perfect sense, and whatever dark secret is hidden will be brought to the surface whether it likes it or not!

The e-book is available from here for 69 pence.

Special Schools Suffer £1M Funding Cut

June 21, 2011

More than 20 schools for children with special needs have suffered a £1m cut in government funding, which will lead to cutbacks in provision, affecting services such as translating books into braille and helping children with disruptive behaviour.

The cut affects private special schools that received money for programmes involving children at state schools.

The schools affected have suffered individual cuts ranging from £45,000 to £145,000. They include the West of England school and college in Exeter, which caters for pupils with visual impairment, and St Vincent’s school in Liverpool, a specialist school for children with sensory impairment.

Claire Dorer, chief executive of the National Association of Independent Schools and Non-Maintained Special Schools (NASS), said that in terms of overall education funding, the £1m cut was a “drop in the ocean” for the Department of Education.

The cut follows a government decision to integrate cash for special schools into the mainstream school funding grant.

When local authorities divided up the money it emerged that grants to private special schools had been overlooked when the department allocated the money, Dorer said. She added: “They are publicly funded schools – local authorities choose to place pupils in them when they can’t meet needs locally. They are not for profit.

“This money was supporting our schools in getting their highly specialised services in particular areas of special needs into other schools. It’s partnership and outreach with maintained and mainstream special schools.

“Pupils in our schools will be relatively unaffected. Pupils in the maintained sector will be affected because this help is going to have to cease.”

Dorer said the West of England school had lost funding for pioneering work looking at how to preserve and develop visual function in affected children.

The 21 schools have been offered £15,000 each, which would not sustain their outreach projects and could result in redundancies, the NASS said.

In a letter to the NASS, education secretary Michael Gove said: “My department has found itself in an exceptional financial situation as a result of the need to focus on reducing the national deficit and to do so as quickly as possible.

“Given the decision not to provide specific funding to maintained specialist schools, we concluded that it would not be appropriate to continue to provide such funding for [non-maintained specialist schools].”

In the letter, Gove said he realised schools would face “very difficult decisions” as a result of the funding cut.

Last week the Financial Times reported that many academies had been given excessive funding by the department. Errors had led to some councils being over-funded by as much as an extra £300 per pupil, worth around £300,000 a year to the average secondary academy.

The department admitted there had been errors submitted by councils, but blamed an over-complex funding system.

The shadow education secretary, Andy Burnham, said last weekend that Gove had “caved in” to a legal claim by 23 councils that too much money had been taken from their budgets to pay for academies.

Happy 4th Birthday Same Difference!

June 21, 2011

Same Difference is four today. I’ve been blogging for four whole years. It’s hard to believe that the site has grown into what it is today. Like most bloggers, when I started out, I thought I’d be lucky to post once a week and get about two hits a day. But I’ve learnt so much in that time about blogging and disability. And yes, Facebook and Twitter have both been a great help in this process.

I won’t bore you any more, but what I will do is thank every single one of the people who have supported me along the way. Same Difference wouldn’t be here today without you! So here’s to the next four years…

Winterbourne View To Close On Friday

June 20, 2011

Good.

A residential hospital for vulnerable adults near Bristol where alleged abuse was secretly filmed by the BBC Panorama programme is to close on Friday.

Castlebeck, which runs Winterbourne View, said the hospital would close on 24 June when the last patients would be transferred to alternative services.

Patients at the unit were filmed by an undercover reporter posing as a care worker.

The footage showed residents being pinned down, slapped and taunted.

A spokesman for Castlebeck said the company had been working closely with families and carers, the NHS and social services “to ensure patients are safely transferred with minimum disruption to their lives”.

After the programme was broadcast Castlebeck apologised and launched an internal investigation.

A number of people have been questioned by police and released on bail following the programme and the government said it would carry out its own review of what happened.

A serious case review into the alleged abuse at the residential hospital has been set for July.

‘Future untenable’

Jack Lopresti, the local Conservative MP, said he had met Lee Reed, the chief executive of Castlebeck, earlier in the day.

Mr Lopresti said: “Mr Reed gave me his assurances that the closure of the hospital will be conducted in as sensitive a way as possible.

“I stand by my call for the hospital’s closure and I am pleased that Castlebeck have come to the same conclusion.

“Given the horrific events which have taken place at Winterbourne View I believe its future running is untenable.”

My Lords, Won’t You Help Me With Welfare Reform?

June 20, 2011

Sue Marsh sings her very original and brilliant version of My Lord, Won’t You Buy Me A Mercedes Benz?

Written, sung and produced by Sue Marsh, diaryofabenefitscrounger.blogspot.com

 

CP Parents Want Support For SDR Procedure In The UK

June 20, 2011

I have CP, and don’t think this would have worked for me personally, but every person and every case is different. I covered Charlotte Wakefield’s story when she had the operation. I wish her mother and friends well for their children’s operations and the campaign.

A group of parents of children with cerebral palsy has started a campaign for better support from the NHS.

Their children have gone to the US for micro-neurosurgery, called selective dorsal rhizotomy (SDR), to help them walk.

The group, Support4SDR, said it now wanted the procedure available in the UK to all who need it.

The Department of Health said doctors could consider offering the treatment as long as results were monitored.

Dorset mother Kim Wakefield, chair of the group, said more help was also needed with physiotherapy.

Frenchay Hospital in Bristol has recently pioneered the same form of SDR, an operation which involves identifying, dividing and cutting spinal nerves which have been causing stiffness and pain in the legs.

Awaiting operations

Members of Support4SDR are setting up a charity, have started an online petition and are contacting MPs.

Mrs Wakefield, of Corfe Mullen, said their main goal was to make the new, less invasive form of SDR more accessible in the UK.

She said parents had been “left in the dark” by the medical profession about the availability in the US of the refined method of SDR as a treatment option.

Her five-year-old daughter Charlotte is among 77 children from the UK who have undergone the procedure refined by surgeon Dr T S Park at the St Louis Hospital in Missouri.

Another 20 are booked in there between now and the end of August and more are awaiting dates for operations.

Each has been helped by family, friends and their local communities to raise the £40,000 needed for the operation, aftercare, travel and accommodation expenses.

At Frenchay Hospital the operations are being funded by individual NHS primary care trusts on a case-by-case basis.

Three SDR procedures have been performed so far by consultant neurosurgeon Kristian Aquilina.

‘Treatment risks’

Mrs Wakefield said the group was delighted with this development and would be offering support and information to families whether they were having SDR in the UK or in the US.

She said it was “vital” that the NHS put more resources to help all the families with the intensive physiotherapy which was essential after the operation to ensure its success.

She said: “The differences I have seen in Charlotte and the other children who have had SDR with Dr Park have been outstanding.

“It is not just about the walking – it’s not a miracle cure – but it is about movement, about taking spasticity away, about taking away pain.

“The difference in the confidence of all the children is amazing. They are all so much more comfortable and happier in their lives.”

A Department of Health spokesperson said guidance by health watchdog NICE – the National Institute for Health and Clinical Excellence – for use of the treatment was revised in December in light of new evidence.

“It is right that NHS bodies are free to make decisions based on this evidence, and on the individual health needs of local people,” she added.

“NICE has advised that selective dorsal rhizotomy can improve spasticity in the longer term and doctors can consider offering the treatment as long as its results are monitored.

“As the side effects and risks of the treatment can be serious, NICE expects doctors to carefully explain these to the patients and their families or carers beforehand.”

A BBC Inside Out documentary about SDR will be shown on BBC One in the West and South West at 1930 BST on Monday 20 June, and on BBC iPlayer.

New Drug Offers Hope For Cystic Fibrosis

June 20, 2011

An international team co-led by scientists at Queen’s University, Belfast, has developed a new drug for Cystic Fibrosis sufferers.

The drug specifically targets the so-called Celtic gene which is common in Ireland.

But the researchers believe the breakthrough will have significant implications for all CF sufferers.

The drug should be available to patients next year. Patients take two tablets a day.

Less than a year ago, scientists were awarded £1.7m to research and develop the drug. Specialists from Europe, America and Australia were involved in the project.

They found significant improvement in lung function, quality of life and a reduction in disease flare ups for those receiving the new treatment.

Stuart Elborn from Queen’s University, Belfast, co-led the team.

“The development of this drug is significant because it is the first to show that treating the underlying cause of Cystic Fibrosis may have profound effects on the disease, even among people who have been living with it for decades.

“The remarkable reductions in sweat chloride observed in this study support the idea that VX-770 improves protein function thereby addressing the fundamental defect that leads to CF.”

Dr Judy Bradley, from the University of Ulster said: “This is a ground breaking treatment because it treats the basic defect caused by the gene mutation in patients.

“Correcting the cells with this mutation shows that treatments aimed at the basic mutation can work leading to improvements in lung function and symptoms.”

Dr Damien Downey, from the Belfast Health and Social Care Trust said: “The success of this study illustrates the benefits that come from collaborative work here in Northern Ireland.

“Not only will this breakthrough help patients in Ireland and the UK but it has the potential to change the lives for those with Cystic Fibrosis around the world.”

As a result of the recent work researchers from Queen’s University, University of Ulster and clinicians from Belfast Health and Social Care Trust have been selected to join the European Cystic Fibrosis Society Clinical Trials Network.

This means Cystic Fibrosis researchers in Northern Ireland will be collaborating with their European counterparts to work toward improved treatments for Cystic Fibrosis on a global level. “

The new drug will be submitted for licensing in the Autumn of this year and is expected to be available to patients by as early as next year.

Stupid Things MPs Might Say

June 20, 2011

I had a conversation on Twitter at the weekend that got me thinking. Someone suggested I should make a list of the stupidest things MPs have ever said. I responded that that would be a long list! But it gave me an idea for a new hashtag- #stupidthingsmpsmightsay. So, I’ve come up with one- lets see if we can get it trending! All in fun.

Britain’s Forgotten Olympians

June 20, 2011

BBC Sport’s Joe Wilson meets up with some of the British athletes heading to the Special Olympics in Athens, the biggest sporting event of 2011.

Police Failing Victims Of Disability Hate Crime, Says Study

June 20, 2011

People with learning disabilities continue to be failed by police forces, with many neither properly investigating disability hate crimes or treating victims as credible witnesses, according to a report by Mencap.

The charity has launched a three-year campaign to ensure offences are treated as seriously as those motivated by racism or homophobia.

The report found that even after high-profile cases such as that of Fiona Pilkington, police too often underplay long-running campaigns of harassment or abuse against people with learning disabilities.

The issue attracted national attention in 2009 when an inquest found that police had failed Pilkington, who killed herself and her severely disabled teenage daughter in a burning car after the family endured years of near-constant torment from local youths.

The Mencap report, Don’t Stand By, uncovered some examples of good police practice. But it also found a more general pattern of patchy and inconsistent responses to crimes affecting people with learning disabilities within many of the 14 English police forces it investigated.

A number had little apparent understanding of the particular needs of victims and the assistance they might require in reporting offences.

Mencap also canvassed the experiences of people with learning disabilities who had been in contact with the police. They discovered many encountered attitudes ranging from patronising – officers ignoring them and speaking only to their support worker – to the downright dismissive. One person told the study: “I reported a crime to police who said, ‘Not you again.’ ”

Such attitudes mean many victims simply never report crimes to police, with officers in turn often overlooking the wider issue, Mencap said.

“Disability hate crime is often the poor relative of racist hate crime,” one officer told the study.

Up to 90% of people with a learning disability are estimated to have endured verbal harassment or violence because of their vulnerability, Mencap’s chief executive Mark Goldring said.

“Too often they accept abuse as a part of their daily life. Early intervention is vital if people with disabilities are not to live in fear. When hate crime takes hold it stops people living their lives in the way they want to.”

Despite efforts by police forces to learn from previous mistakes, many people with learning disabilities were not “getting the level of service they are entitled to” from police, Goldring said in the introduction to the report.

“We continue to hear reports of incidents being dismissed as ‘only antisocial behaviour’, with little or no real action being taken.”

While the Pilkington case saw the harassment of a severely disabled person living with a carer, many other incidents involve people with less serious learning disabilities. They are able to lead independent lives but nonetheless remain vulnerable.

In one such case a 36-year-old man, Keith Philpott, was beaten and stabbed to death in his Teesside flat by local men who wrongly believed he was sexually involved with a teenage girl.

Mencap is asking police forces to sign up to a 10-point list of promises, including more support for crime victims with learning difficulties, an end to discriminatory language and attitudes among officers and efforts not to write offences off as “just” antisocial behaviour.

Stephen Otter, the chief constable of Devon and Cornwall police, who speaks on equality issues for the Association of Chief Police Officers, said the fact that police took part in the Mencap study showed a level of commitment.

“What isn’t true is that we don’t treat it seriously,” he said.

“What is true is that we find it difficult to get disabled people, in particular those with learning disabilities, to feel confident enough to report things to us.”

This was being tackled through measures such as online reporting of harassment and other crimes, as well as further training.

“I think it’s already the case that if people who are disabled contact the police they get a better service than they did five or 10 years ago,” he added.

“However, there’s always a lag in that confidence in the mind of the disabled person. They hear stories based on the history, and what we’re finding very hard is to break through that. We need people’s perceptions to change.”

Robert Cowie

June 20, 2011

Police are trying to establish the circumstances surrounding the death of a Glasgow man whose mother took him to a Swiss clinic to die.

Helen Cowie told BBC Scotland’s Call Kaye show she helped her son Robert, 33, commit suicide after he was left paralysed from the neck down.

Mrs Cowie, of Cardonald, Glasgow, said her son went to Dignitas in October and “had a very peaceful ending”.

Strathclyde Police said they were not investigating the death at this time.

However, a spokesman added: “The matter is being given consideration in an effort to establish the circumstances.”

Mrs Cowie said her son was paralysed in a swimming accident three years ago.

She told the radio programme: “His life was terrible, he was suffering every day.

“He was just a head, he didn’t want to be there anymore. He had been a big, fit healthy boy.

“We asked him not to do it, but it was his decision.”

 Mrs Cowie said Robert had not been a burden to the family, but she agreed to help him because he was “really unhappy”.

She described Monday’s BBC documentary Choosing To Die, presented by author and Alzheimer’s sufferer Terry Pratchett, as “brilliant” and empathised with the mother who helped her disabled son to die in the television soap Emmerdale.

Mrs Cowie described the Dignitas experience as “wonderful, relaxed, peaceful and happy”, and they listened to the Oasis song Listen Up as her son died.

The song includes the line: “One fine day I’m gonna leave you all behind. It wouldn’t be so bad if I had more time.”

She said: “We were in Zurich for four days with my three sons and his friend, and one of my sons said it was the happiest he had seen his brother in three years.

“I would rather have been able to do it in this country. That really upsets me that I had to take my son to Switzerland, and I had to leave his body there and wait for the ashes to come back.”

Optician Finds Cure For Face Blindness

June 20, 2011

An optician in Scotland has developed what is claimed to be the first-ever effective treatment for face-blindness.

Ian Jordan, who is based in Ayr, has been invited to address a major conference in London.

Face-blindness, known technically as prosopagnosia, is an inability to recognize faces or facial expressions.

About one person in 40 is affected by the condition, which is particularly common among people on the autistic spectrum.

It can also occur after brain trauma, the result of an accident or stroke.

Mr Jordan discovered the method he uses to treat face-blindness by accident, while treating someone for another sensory processing condition.

Facial recognition

Speaking about the treatment, he said: “This is a real breakthrough and will be life-changing for those with prosopagnosia.

“Until now, there hasn’t been any way to treat it – just techniques and strategies to deal with the consequences.

“Some people are able to piece together a person’s identity by recognising the way they walk or the sound of their voice, but the prospect of meeting and having to identify new people, either socially, at work or at school, can be very distressing.”

Patient Alan Mandelson said: “It gave me more confidence to go out and actually try to socialise.

“Before I started going for (this treatment) I was kind of a social recluse, staying around the house. I didn’t really want to try to make friends.

“Every time I tried, next time I saw them I even remember who they were.”

Looking at the world with certain colours filtered out and other colours enhanced makes it possible for the brain to receive all the information it needs to distinguish one face from another.

Coloured lenses

Patients are prescribed tailor-made lenses in the colour most suited to their condition.

Isabelle Thorald, who has received the treatment, said: “When I put the glasses on, everything looks a hundred times better.

“I know people joke about the world looking better through rose-tinted spectacles, but it’s actually kind of true.

“I can see a whole face at once when I put my glasses on.”

Ian Jordan has been invited to outline his treatment at the Treating Autism 7th Biomedical Conference and Exhibition in London.

Motability Scheme Being Abused, Claims Source

June 19, 2011

Flash cars leased to disabled people under a £1.4 billion benefits scheme are being driven by their family and friends in an abuse of the system, it has been claimed.

Those who qualify for help from the Government with getting around can receive a benefit of £51.40 a week, which many use to lease vehicles from a not-for-profit company.

The firm, Motability Operations, provides them with a new car every three years, exempt from road tax and VAT – with BMWs and Mercedes among those leased out.

But friends and relatives of the disabled people for whom the vehicles are intended are known to take advantage of them, driving them themselves for their own purposes, a Whitehall source said.

“A lot of people are saying ‘my neighbours have got this car and it’s for their granny, but they ride in it,” the source said.

“The issue this raises is ‘is Motability being abused?’ And the answer is absolutely, in some cases it is.”

It is thought that almost 200,000 of the cars are being used by friends and relatives of the disabled people.

But it is not clear how many of these are driving them for legitimate purposes such as chauffeuring the disabled person or helping them with their shopping.

“Sometimes it’s for the right thing and sometimes it’s for the wrong thing,” the source said.

The Government hopes that its planned reform of the disability living allowance (DLA) will help stamp out such abuses by introducing closer scrutiny of the system and considering whether Motability is the best option for everyone.

Disabled Child’s Tax Credit To Be Halved Under Welfare Reform Bill

June 18, 2011

A hundred thousand disabled children will lose out when a crucial welfare benefit is halved under controversial reforms.

Parents can now receive a maximum of £54 a week through tax credits to help with the extra cost of looking after a child with disabilities. But under the welfare reform bill, passed by the Commons last week, that benefit will form part of universal credit and be cut to £27 a week, plunging thousands of families below the poverty line, according to the Children’s Society.

The government says the money saved will allow it to offer larger sums to children with severe disabilities. However, the Children’s Society said some families would lose £1,400 a year. It is claimed this could cost families with a child born with a disability about £22,000 by the time the child reaches 16. The government says it will provide transitional payments to ensure people do not lose out, but the guarantee does not extend to new claimants and will not be protected from inflation. Cash protection will also be lost through as yet undefined changes in a family’s circumstances.

Antony Best, 23, whose wife died of swine flu in January, leaving him responsible for three children under four, two of whom have disabilities, said the change would mean he would struggle to run the car he needs to take them to hospital. Best, from Bradford, said: “I receive £197 a month through credits and disability allowance for help with my eldest child, who has Down’s syndrome, and I am applying for help with my youngest son, who has cerebral palsy. Without it I wouldn’t be able to put anything in a fund for their futures and I don’t know how I would run the car. It would have a huge impact.”

Bob Reitemeier, chief executive of the Children’s Society, called for the government to halt the reforms. “This cut threatens to push many disabled children back below the poverty line,” he said “With 100,000 children affected by this, there are 100,000 reasons to rethink this policy.”

The revelation follows angry exchanges in the Commons over welfare changes which are set to see 7,000 cancer victims lose their benefits. On Friday a Tory MP, Philip Davies, was condemned for suggesting disabled people should be allowed to work for less than the minimum wage to make them more attractive to employers.

The bill will hit hundreds of thousands of disabled people by cutting their housing benefit. Under the proposals, 670,000 social housing tenants with a “spare room” will lose an average £676 a year because their homes will be deemed too large for their needs. Two-thirds of those who will be affected – about 450,000 people – are disabled according to the government’s impact assessment. Up to 200,000 of those receive disability living allowance and about 100,000 live in homes adapted to their needs.

The proposed housing benefit cuts mean many tenants will go into debt and others will have to move, says the National Housing Federation’s chief executive, David Orr: “The cuts to housing benefit are extremely harsh. Under-occupation in the social housing sector should be tackled, but slashing people’s housing benefit and pushing them into poverty is not the answer.”

Richard Hawkes, chief executive of disability charity Scope, said: “Cuts to child benefit, disability living allowance reforms and the impact of local authority budget cuts are all having a cumulative effect that could risk pushing thousands more families into poverty as a result.”

The Department for Work and Pensions said: “Our reforms don’t necessarily mean that people will need to move and our discretionary housing payment fund will provide a safety net for those who need it, with £130m invested over four years to smooth the transition. We will ensure there are no cash losers when people are moved to universal credit. We have increased the number of children eligible for the higher rate of disability support, and the introduction of universal credit will lift a million people, including 350,000 children, out of poverty.”

Locking Autistic Man In Padded Room Was Unlawful, Says Court Of Protection

June 18, 2011

The Court of Protection has ruled that an 18-year-old man with autism and severe learning disabilities who was regularly placed in a padded seclusion room more than six times a day was unlawfully deprived of his liberty.

The man, who cannot be named for legal reasons, was taken as a 16-year-old to a residential school for children with complex needs. The teenager went with his mother’s permission but a dispute broke out in 2010 between care workers and the boy’s family after specialists began regularly relying on a special cell known as “the blue room” to control his behaviour.

The court heard how the boy, who is referred to in proceedingd as “C”, was placed in the padded room 192 times in a single month, the equivalent of 6.4 times a day.In a ruling in the Court of Protection at the High Court, Mr Justice Ryder described the case as “complex” and “tragic” but ruled that the use of the room was a deprivation of C’s liberty and was unlawful because the special needs school had not sought a deprivation of liberty order through the court.

“Between his 16th birthday on 29 July 2008?and his 18th birthday… there was no authority by court order or statutory power for C to be deprived of his liberty either generally or in the blue room,” the judge ruled.

The ruling is the second time in as many weeks that the Court of Protection has found that a local authority wrongly deprived someone of their liberty. Last week the London Borough of Hillingdon was severely criticised by a judge for taking Steven Neary, a 21-year-old man with autism and severe learning disabilities, away from his father for more than a year.

Unlike the Neary case, in which all parties had already been publicly named before proceedings began and could therefore be named in the press, the local authority, primary care trust and school involved in C’s care cannot be named to protect his identity.The details of the case were made public for the first time yesterday. C was described as a boy who has “aggressive and destructive traits” which put him at risk to both himself and his carers.

He suffers from a sensory impairment and often chooses to walk around naked because touch is a vital way for him to communicate. He often harms himself and has harmed his carers including one member of staff who suffered a detached retina.

Throughout 2010 C’s behaviour deteriorated considerably and care workers came to rely on the blue room more and more often to control his actions.

The room itself was described as a “specially constructed blue room which is padded and which is approximately 10 feet square with a secure door and window, through which the whole of the room cannot be seen when the door is closed.”

C’s mother became increasingly worried about the use of the blue room and testified how her son had become “a tall emaciated young man, covered in bruises and scabs with protruded elbows and joints, malformed feet and cuts over his eyes. I hear him wailing, crying, shouting.”

The head teacher countered that C’s behaviour was “some of the most severe I have seen” and the school gave evidence showing that as many as 2090 instances of challenging behaviour were logged in June 2010 alone – the equivalent of 70 a day.

Mr Justice Ryder said the head teacher was “undoubtedly a dedicated man” but added that “in the judgement of this court [he] has lost sight of the essential human problems that need to be solved in the morass of structural and guidance issues which also arise.”

The judge ruled that C’s article 5 right to liberty and security under the European Convetion on Human Rights had been breached. A further hearing to discuss damages and whether further rights were breached will take place at a later date.

On a final note the judge added: “It would not be right to leave this tragic case without noting that there are many very dedicated people, professionals and trained carers alike who are involved in the care of those with complex needs like C; they deserve the court’s and society’s sincere thanks.”

Philip Davies MP’s Comments On Minimum Wage For Disabled People

June 17, 2011

I’ve been offline for most of today and have just read about Philip Davies MP’s comments on the minimum wage for people with disabilities. I couldn’t believe my eyes. In a Commons debate today on the national minimum wage, he said that “vulnerable” jobseekers – including disabled people – should be allowed to work for less than the minimum wage.

He explained that the minimum wage may be a ‘hindrance’ to some jobseekers, including people with learning disabilities and mental health problems, because it puts these groups of people at a disadvantage, since they have to compete with non disabled candidates for jobs and could not offer to accept lower pay.

He said he had talked to people with mental health problems during a visit to a surgery run by the charity Mind, and they had “accepted” that they would be passed over in favour of jobseekers without disabilities.

“Given some of those people with a learning disability clearly, by definition, cannot be as productive in their work as somebody who has not got a disability of that nature, then it was inevitable given the employer was going to have to pay them both the same they were going to take on the person who was going to be more productive, less of a risk,” he said.

He added that if disabled people wished to work for less than the minimum wage for a short period of time to help them get their first job, then he did not see why the Government should be standing in their way.

I’m absolutely shocked at this whole incident. This idea goes against every law I’ve ever heard of. If an MP, who is supposed to be helping to create laws to protect everyone in society from situations exactly like the one he suggested, doesn’t see anything wrong with revealing such outdated views, then what should disabled people be expecting from the rest of society? Disabled people are not second-class citizens, or, as Mind spokesperson Sophie Corlett put it, ”cheap labour.” Why should we be exploited in the workplace?

As a disabled person who has worked, I have seen for myself that there are very few employers who are willing to accept disabled employees. However, I sincerely hope that this has very little to do with any reluctance to pay them a minimum wage as a result of disability. It has more to do with a reluctance to make ‘reasonable adjustments’ to meet their needs in the workplace. This is often because such adjustments are expensive or inconvenient- they could include allowing regular leave for medical appointments or hospital stays.

Labour MP Dame Anne Begg summarises my views on the incident very well with her response: “To say that all disabled people should be excluded from the coverage of the minimum wage … would be discriminatory against disabled people. It would set the cause of equality for disabled people back sometime to the middle of the last century.”

I am relieved to read the response of a Conservative Party spokesman who said: “These comments do not reflect the views of the Conservative Party and do not reflect government policy”.

Disabled people are already being affected so much more than most by the Government’s spending cuts and plans for welfare reform. The Welfare Reform Bill will affect us directly with its cuts to Disability Living Allowance and time-limiting of Employment Support Allowance. With all the publicity surrounding these plans, we already feel lazy and useless- this incident makes us feel even worse. I can’t help wondering why we are going to be hit so hard by these plans- is it because the Government really does think we are worth less than the rest of society?

If the Conservative Party really wants to distance itself from these comments, the Prime Minister should call for Philip Davies to make a full and public apology to all disabled people as soon as possible.

Disability Horizons Article On Media Representation

June 17, 2011

The third edition of online mag Disability Horizons has launched. It includes this article by me, about disability representation on the TV.

US Man’s Sight Restored- After 55 YEARS

June 17, 2011

What a miracle. I’m smiling my face off after reading this!

A man in the US, who was blinded in one eye 55 years ago, has had his sight restored, according to the Journal of Medical Case Reports.

The patient was eight when his retina was detached after he was hit in the right eye with a stone.

When the retina is detached for a long time it be permanently damaged, so re-attaching it might not restore vision.

Doctors said restoring sight after this length of time was a medical first.

The man was 63 when he went to the New York Eye and Ear Infirmary, saying he had pain and redness in his eye.

There was swelling, bleeding and a high fluid pressure in his right eye.

Light sight

After washing the eye out and treatment with a drug which stopped new blood vessels forming – the eye went from completely blind to being able to detect the source of a bright light.

Doctors thought this was encouraging enough to try re-attaching the retina.

After surgery he was able to see again.

Surgeons believe it was successful because of the low “height” of the retinal detachment.

Dr Olusola Olawoye said: “To the best of our knowledge this is the first report of visual recovery in a patient with long-standing traumatic retinal detachment.

“This is not only a great result for our patient but has implications for restoring eyesight in other patients, especially in the context of stem cell research into retinal progenitor cells which may be able to be transplanted into diseased retinas to restore vision.”

Progress On SEN Policy

June 16, 2011

This post at Left Foot Forward may be interesting to those who follow government policy on SEN.

Dan McIntyre

June 16, 2011

A West Yorkshire man has successfully crossed the Swiss Alps on a tricycle manufactured in 1932.

Wheelchair-user Dan McIntyre from Liversedge was the main driver recreating a 1,500-mile (2,400km) journey made on the trike, a forerunner of modern mobility scooters, in 1947.

Visiting Paris, Basel and Geneva he arrived back in London via three alpine climbs.

Mr McIntyre, 32, praised his trike and “the old girl’s” durability.

However, he admitted the trip was not easy and the trike suffered several mechanical breakdowns.

Scared of heights

“It’s been quite tiring and I’ve been exposed to the elements.

“Everyone we’ve met has been helpful and friendly,” he said.

The ride was a tribute to Oswald Arthur Denly who did the ride in 1947.

He had been invalided out of the Royal Navy after contracting polio and becoming paralysed from the waist down.

Having not yet realised his dream of seeing the Alps he set out alone on his 1930s Argoson 147cc tricycle.

Mr Denly later founded the charity that has now become Disabled Motoring UK.

Mr McIntyre’s trip finished at the Houses of Parliament with Paralympian Baroness Tanni Grey-Thompson driving the symbolic last leg.

Racing driver Nicholas Hamilton also joined the trip and had a spell driving the trike.

Mr McIntyre said: “I’ve been thinking of doing Land’s End to John O’Groats in my wheelchair next.

“It would be nice to do something again.”

Katie Price Urges Frankie Boyle To Meet Harvey

June 16, 2011

Katie Price has challenged Frankie Boyle to meet her disabled son Harvey after the controversial comic made a joke about him.

The former glamour model will appear in a one-off documentary later this month about life with her son, who she described as “a wonderful boy”.

She said: “I am so proud of how he deals every day with his disability. He has been my one constant over the past eight years and, alongside Junior and Princess, remains the most important person in my life.

“But of course Harvey doesn’t have the voice to defend himself, so through this documentary I hope to encourage other people to appreciate the difficulties that children with disability and their parents face every day. I am lucky to be able to make this film and hope it helps those who struggle to cope with disability and prejudice without the support network I have.”

Boyle caused controversy when he made a jibe in his Channel 4 series Tramadol Nights about Harvey making sexual advances towards his mother.

A spokesman for Sky Living, which is broadcasting the show, said: “In a bid to explain how the ‘joke’ affected her personally, Katie’s ultimate wish is to speak directly to Frankie, and even encourage him to meet Harvey for himself. Will he agree to a meeting or will he avoid explaining his position? Will he apologise?”

Harvey, who is Price’s son from a relationship with former Manchester United footballer Dwight Yorke, suffers from autism and life-threatening hormone deficiencies.

Channel 4’s chief executive was attacked by an MP for making the “appalling decision” to broadcast the joke. Asked why he had not apologised for the broadcast, chief executive David Abraham told the House of Commons Culture Media and Sport select committee that the remark caused offence because it was taken “out of context”.

Best-selling author and Conservative MP Louise Mensch repeated the joke to Mr Abraham, telling him: “This is a disabled little boy that we’re talking about.

“I am bewildered that you can sit here and say that it’s challenging political correctness and that you will not apologise to a little boy for having put him on a television programme in this context.”

Eye Disease Treatment Trials To Begin

June 16, 2011

A group of patients with common but incurable eye diseases that can lead to blindness are to have cells injected into their eyes in two groundbreaking trials of a therapy that could heal the damage wrought by the conditions.

Doctors have drawn up plans to treat the first of 24 patients, who have been recruited to the trials, starting in July, at the Jules Stein Eye Institute, at the University of California, Los Angeles.

The medical teams hope to slow, halt or even reverse the effects of the diseases by injecting healthy retinal cells into the eye. . The treatment is controversial because the replacement retinal cells – known as RPE, or retinal pigment epithelial cells –are derived from human embryonic stem cells.

The announcement of the trials is a landmark for the Massachusetts-based company Advanced Cell Technology, which has been developing the therapy for 10 years.

In one trial the treatment will be given to a dozen patients with an eye disorder called dry age-related macular degeneration (dry AMD). The second trial will focus on the same number of patients with the condition known as Stargardt’s macular dystrophy, which typically strikes younger people, aged 10 to 20.

The early-stage trials will focus on the safety of the therapy, which will be assessed by doctors over 12 months. The patients in each trial will be split into four groups of three individuals, with each group receiving a different number of cells in the treatment.

Steven Schwartz, retina division chief at the institute, said the trials marked a significant step towards addressing what was “one of the largest unmet medical needs of our time – treatments for otherwise untreatable and common forms of legal blindness”.

Dry AMD is the most common cause of blindness in the developed world and the leading cause of lost vision in people aged 55 and over. As the population ages over the next 20 years, cases of dry AMD are expected to double.

In both diseases, loss of sight is caused by a thinning of retinal pigment epithelial cells at the centre of the retina, the region where the eye forms its sharpest images. The loss of RPE cells leads to light-sensitive cells dying off in the retina and ultimately vision loss and even blindness.

If the treatment works as doctors hope, the freshly made RPE cells, which will be injected into the eye, will grow and eventually restore the retina to a healthy state able to support light-sensitive cells required for eyesight.

“We hope that these cells will, in the future, provide a treatment not only for these two untreatable diseases, Stargardt’s disease and macular degeneration, but for patients suffering from a range of other debilitating eye diseases,” said Robert Lanza, ACT’s chief scientific officer.

Animal studies, including experiments in rats with macular degeneration, reportedly showed that injecting fresh retinal cells into the eye could bring about a substantial improvement in eyesight. In further studies, scientists said, mice with the eye disease recovered near-normal vision after receiving the therapy.

Last year, the California-based company Geron began a long-awaited trial of a stem-cell therapy aimed at repairing damaged spinal cords. By injecting stem cells directly into the spine, doctors hope the therapy will repair damaged nerve cells enough for paralysed people to regain some movement.

The trials organised by ACT and Geron are first steps towards clinical treatments that will have to prove themselves in more extensive trials over the next few years before they can be approved for use in patients.

British Airways Turns Away Alice Saunders, 12, Because Of Down’s Syndrome

June 16, 2011

What on Earth? They are a national airline! They really should know better than to break the law!

Heather Saunders is a very special mother who has shown her strength in speaking out for her daughter after this terrible incident. I hope more newspapers pick up the story. I’m now seriously considering whether I ever want to fly British Airways again.

A girl of 12 was refused a plane ticket by British Airways staff because she has Down’s syndrome.

The mother of Alice Saunders was stunned when she was told her daughter could not fly unaccompanied as it was the company’s policy not to accept passengers with Down’s travelling alone.

Heather Saunders, 49, had phoned the airline to book Alice a flight from Gatwick to Glasgow.

 Heather said: ‘I explained I wanted her to travel as an unaccompanied minor, she was 12 years old, she had Down’s syndrome and was very independent.

‘The woman said, “Our policy says we don’t take children with Down’s syndrome”. When asked why, the BA customer service agent responded: ‘Because we’ve had problems in the past.’

  Mrs Saunders added: ‘They advise you let them know of any additional needs. I said, “What if I hadn’t told you?”

‘She said they would have turned her down when she arrived because she’s got Down’s syndrome.’

Asked what the position would be if  the passenger were a child on the autistic spectrum, the BA staff member said: ‘We wouldn’t be able to see that.’

Alice, who planned to go to Glasgow to visit her aunt, attends a mainstream school, reads as well as an average 12-year-old, and regularly goes away with church and Guide groups.

She lives with her parents and three older siblings in Littlehampton, West Sussex.

Mrs Saunders said: ‘We didn’t know Alice had Down’s syndrome before she was born.

‘Our expectation has always been she would do what her siblings have done – with extra support. Alice knows she has Down’s. She’s very proud of the fact.

‘We’ve never had any problem with discrimination before.’

She added: ‘I was very cross after speaking with British Airways and I got crosser afterwards.

‘It was discrimination against people with a disability but more worryingly people with a specific disability. BA should be better informed.

‘This is 2011. Most of the world has moved on in terms of their treatment of people with learning disabilities. People with Down’s syndrome go to mainstream school, college, they live independently, they hold down jobs but, it would seem, cannot travel independently with British Airways.’

Carole Boyes, chief executive of the Down’s Syndrome Association, said she was surprised to learn of BA’s behaviour.

She said: ‘I couldn’t understand it. It seemed very strange.’

A BA spokesman said it was not company policy to refuse solo flyers with Down’s syndrome.

She added: ‘We will carry any child over five years old as an unaccompanied minor provided they can go to the toilet unassisted, feed themselves, and behave in a socially acceptable manner.

‘This includes children who have Down’s syndrome and other additional needs.

‘We apologise unreservedly for the upset caused to Mrs Saunders and her daughter. Our customer service agent made a mistake and we will ensure this is rectified.

‘We will be happy to accept Mrs Saunders’ daughter as an unaccompanied minor.

‘We have offered Mrs Saunders two return flight tickets as an apology,’ she added.

 

‘Miracle’ Treatment For Genetic Conditions Closer

June 16, 2011

Genetic faults that cause diseases such as cystic fibrosis, muscular dystrophy and some cancers could be repaired in a new technique described as a “miracle of modern medicine”

 Genetic diseases result from flaws in the body’s instruction code or DNA that lead to the cells not functioning or developing as they should.

But, in what is claimed to be a world first, scientists claim they have come up with an entirely new way to rewrite the code – reversing any flaws or faults.

“This is a really powerful concept that can be used to try to suppress the tendency of individuals to get certain debilitating, and sometimes fatal genetic diseases that will forever change their lives,” said Dr Robert Bambara, at the University of Rochester, in New York.

The findings, though early, are significant because they may ultimately help researchers alter the course of devastating genetic disorders, such as cystic fibrosis, muscular dystrophy and many forms of cancer.

More than 8,000 people in Britain suffer from cystic fibrosis, including Gordon Brown’s son, Fraser. A further 30,000 people have muscular dystrophy.

Both diseases are highly debilitating and lead to shortened lifespans. The genetic code is the body’s own instruction manual and tells it how to develop and how to function.

This is mainly done through the production of proteins and these can be affected by faults or mutations in the reading of the strands of DNA.

One common type of mutation is when a premature “stop” or “codon” signal occurs and this orders a cell to stop reading the genetic instructions part-way through the process, resulting in the creation of an incomplete, shortened protein.

These incomplete proteins are what cause a third of genetic conditions such as cystic fibrosis, muscular dystrophy and could contribute to cancers.

Now the researchers, who published results the journal Nature, claim to be able to turn the stop signal into a “go” signal.

As a result, the cell could read the genetic instructions all the way through and create a normal, full-length protein.

The team have produced these results both in a test tube and in live yeast cells but if they hope to eventually use them in the body.

“This is a very exciting finding,” said Professor Yi-Tao Yu, lead study author. “No one ever imagined that you could alter a stop codon the way we have and allow translation to continue uninterrupted like it was never there in the first place.”

Dr Bambara said: “The ability to manipulate the production of a protein from a particular gene is the new miracle of modern medicine.”

The system works by altering a messenger in the body called mRNA which usually transfers the instructions of the DNA to the cells to make the proteins.

At present there are no cures for genetic disease and the medical profession has concentrated on prevention, screening children in the womb for any risks.

Three Cornish People At Winterbourne View

June 16, 2011

Three patients from Cornwall were at a Bristol hospital at the centre of an abuse scandal within the past 14 months, BBC Cornwall has learned.

A BBC Panorama programme exposed the abuse of adults with learning disabilities at Winterbourne View.

All three people from Cornwall who were at the unit have since been moved to alternative services.

Health and council officials in Cornwall said they were working with relevant authorities on the issue.

Eleven people have been questioned and released on bail following the programme, and the government said it would carry out its own review of what happened.

Patients at the unit, run by a company called Castlebeck, were filmed by an undercover reporter posing as a care worker.

Residents were seen being punched, slapped, taunted and drenched with water.

A former senior nurse there repeatedly contacted the regulator, the Care Quality Commission (CQC), with concerns, but it failed to act.

The CQC later admitted it was “an unforgivable error of judgement.”

A serious case review into the alleged abuse at the residential hospital has been set for July.

Solicitor’s investigation

One family from St Austell said they believed their relative had suffered probable physical abuse, intimidation and bullying when they were at the hospital between November 2006 and April 2010.

The family has asked a solicitor to investigate the allegations of abuse.

The Cornwall Partnership Foundation Trust – the principal provider of mental health and learning disability services to people living in Cornwall – said that it, the county’s primary care trust and Cornwall Council were aware of the situation.

It said they were all working closely with all relevant authorities on the issue, but that, because of on-going investigations, it was unable to comment further.

The people from Cornwall were in Bristol after clinicians in Cornwall decided the patients’ needs could not be met in the county and that they needed to be sent somewhere suitable elsewhere.

Terry Pratchett Defends Choosing To Die

June 15, 2011

From yesterday’s Guardian:

Sir Terry Pratchett has defended his BBC2 documentary, which showed the death of a millionaire hotelier suffering from motor neurone disease, against criticism from groups opposed to assisted dying.

In Choosing to Die, screened on Monday night, the 63-year-old writer, who has Alzheimer’s disease, went to the Dignitas clinic in Switzerland to see Peter Smedley take a lethal dose of barbiturates. Michael Nazir-Ali, the retired Bishop of Rochester condemned the programme as “science fiction”, while Care not Killing (CNK) described it as “a recipe for elder abuse and also a threat to vulnerable people”.

Asked why he wanted to make the film, Pratchett told BBC Breakfast: “Because I was appalled at the current situation. I know that assisted dying is practised in at least three places in Europe and also in the United States. The government here has always turned its back on it and I was ashamed that British people had to drag themselves to Switzerland, at considerable cost, in order to get the services that they were hoping for.”

Smedley, 71, travelled from his mansion in Guernsey to the clinic, which over the last 12 years has helped 1,100 people to die.

Pratchett said: “Peter wanted to show the world what was happening and why he was doing it.” He added: “You can tell in the film that I’m moved. The incongruity of the situation overtakes you. A man has died, that’s a bad thing. But he wanted to die, that’s a good thing.”

Campaigners accused the BBC of helping to promote assisted dying and of consistently portraying the practice favourably.

Writing on the Christian Concern website, Nazir-Ali said: “Real life is quite different from Sir Terry’s science fiction … The Judaeo-Christian tradition is a surer guide. ‘Thou shalt not kill’ is about acknowledging the gift and dignity of human life which, whether ours or another’s, we do not have the competence to take.”

CNK’s campaign director, Dr Peter Saunders said: “This latest move by the BBC is a disgraceful use of licence-payers’ money and further evidence of a blatant campaigning stance. The corporation has now produced five documentaries or docudramas since 2008 portraying assisted suicide in a positive light. Where are the balancing programmes showing the benefits of palliative care, promoting investment on social support for vulnerable people or highlighting the great dangers of legalisation which have convinced parliaments in Australia, France, Canada, Scotland and the US to resist any change in the law in the last 12 months alone?”

Pratchett is a patron of Dignity in Dying, which campaigns for a change in the law to allow assisted dying. The organisation’s chief executive, Sarah Wootton, said: “At the heart of the assisted dying debate, and Choosing to Die, is choice and protection. People suffer at the end of life, and therefore people take difficult decisions about their own deaths. As uncomfortable as it may be we need to face up to the reality of what is going on, both at home and abroad.”

Katharine Quarmby’s Top Ten Disabled Characters

June 15, 2011

In today’s Guardian, Katharine Quarmby, the author of Scapegoat, lists her top ten disabled characters in English literature, from Jane Eyre to last year. Can you think of any others? Please share them in the comments below.

New Able Radio Slot: Able Life

June 15, 2011

Starting tonight, I’ll be participating regularly in a new programme on Able Radio called Able Life, airing every Wednesday at 8pm. This week, I’ll be sharing my personal thoughts on assisted dying. And, readers, I have a special treat for you all. You can hear what I said before it airs, right here, right now.

The Season Of The Dwarf

June 15, 2011

I’m linking to this post on the BBC Ouch blog, which has information about a few new programmes that are coming up this year. They are all about life as a person of restricted growth.

Jo Day

June 15, 2011

A woman whose leg is bent permanently to her chest says she is positive ahead of an operation which could transform her life.

Jo Day, 37, from Weston-under-Lizard, Staffordshire, will have surgery to straighten her leg at Queen Elizabeth Hospital Birmingham on Wednesday.

Risks could mean her body becoming stuck in another position.

Miss Day, whose leg is bent due to a neurological condition called dystonia, said there was no point “being angry”.

Brain stimulator

Her dystonia was triggered by a fall when she was a teenager, in which she broke her elbow while roller skating.

Miss Day has a deep brain stimulator in her head with wires going down the side of her body to help control her condition.

A leg has been fixed in the same position for four years.

She said: “They could get my leg down, but then I could get a spasm somewhere else.

“So instead of my leg being bent, a knee [problem] could go to the ankle, so that the foot bends up or bends back or it could go to the other leg or my back.

“But touch wood, none of that’s going to happen, because [of] positive vibes.”

Her assistance dog, Kaiser, who completes tasks such as fetching drinks and medicine, will be allowed to visit her every day in hospital.

Miss Day added: “I think it takes so much energy to be down than it does to be happy.

“Just because I had this, it isn’t anyone’s fault, so there’s no point being angry with the world or anyone else.”

Channel 4 Chief Criticised By MP Over Frankie Boyle’s Harvey Price Comments

June 15, 2011

Channel 4’s chief executive has been attacked by an MP for making the “appalling decision” to broadcast Frankie Boyle’s joke about Katie Price’s son Harvey.

Media watchdog Ofcom ruled in April that Channel 4 breached broadcasting guidelines in controversial TV series Tramadol Nights with a jibe about Harvey making sexual advances towards his mother.

Asked why he had not apologised for the broadcast, chief executive David Abraham told the House of Commons Culture Media and Sport select committee that the remark caused offence because it was taken “out of context”.

He said: “We obviously recognise in that particular case, a piece of humour, that was contextualised in the programme late at night, was then passed on in the media and out of context, did cause a reaction which we had not intended. We only ever had satirical intent. We did not intend in any way to focus the humour on a disabled child in this instance.”

Mr Abraham said the channel would “like to move on”, adding “our commitment to disability issues has been shown across the board”.

He admitted to MPs: “There are some lessons to be learned for us on this case. Maybe we won’t got it right every single time. We are making hundreds of creative decisions a week.”

Mr Abraham did not rule out working with the comedian again, saying: “He clearly works at the edge of taste but that is also the place where Channel 4 needs to be, but to be so in a responsible way.”

Best-selling author and Conservative MP Louise Mensch repeated the joke before Mr Abraham, telling him: “This is a disabled little boy that we’re talking about. Surely no cultural remit can ever possibly justify such a joke?”

Mr Abraham, who was paid a bonus of £123,000 last year on top of his salary, said the joke was set against the context of Price’s own reality TV show.

Channel 4 chairman Lord Burns did apologise, telling the committee: “It was humour directed at his (Harvey’s) mother but personally, if it has caused distress to the son, then obviously I’m very sorry.”

Jane Cordell Appealing Home Office Decision On Overseas Posting

June 14, 2011

I’ve covered the case of Jane Cordell in some detail, here and elsewhere, so I am very pleased to read that she is appealing the Employment Tribunal’s decision. I hope her appeal is successful.

A deaf British diplomat who took the Foreign and Commonwealth Office (FCO) to an employment tribunal for revoking a job offer will have her case reconsidered this week.

Jane Cordell, 45, was offered the post of deputy head of mission in Kazakhstan last year, only to have it revoked when the FCO decided that facilitating for her disability would be too expensive.

Ms Cordell, who had worked for the FCO since 2001, challenged the decision at a London employment tribunal, but lost her case when the tribunal ruled that the cost of sending her to Kazakhstan – calculated by the FCO to be around £695,000 for a two year posting and £990,000 for three years – was beyond the “reasonable adjustments” which employers are obliged to make to help disabled staff.

The diplomat, who personally estimates that her posting would cost between £100,00 and £200,000 per year, will have her appeal heard at the Employment Appeal Tribunal this Thursday.

Staff at the Equality and Human Rights Commission (EHRC), which is funding Ms Cordell’s appeal, say that the appeal is based on a number of grounds. One argument which is expected to be put forward is that diplomats can request an allowance of up to £25,000 per child, per annum, to cover education costs, without threshold. The EHRC says such allowances make the cost of catering for the deaftness of Ms Cordell, who is childless, seem comparatively more reasonable.

“I appealed the decision because the employment tribunal did not give me enough clarity on the broader question of whether it is ok to set a cost threshold beyond which disabled staff are subjected to scrutiny, but not set a threshold for other groups incurring similar costs,” said Mrs Cordell.

“If disabled people’s careers can in some cases be capped due to cost, where will the UK’s positive disabled role models come from? And what will be the implications if there are none or if they are less diverse?”

A spokesman for the FCO said that it welcomed the outcome of the case, but regretted that it had come to legal action.

He added that whenever possible, the FCO tried to facilitate for disabled workers, and currently had 244 disabled staff, 51 of whom were posted overseas.

 

Choosing To Die: Disability Charities React

June 14, 2011

Disability charities have been reacting to Choosing To Die. I’ll link their statements all in one place in this post. Please send me any I may have missed and these will be added to this list.

You And Yours: Mark Neary And A Winterbourne View Mother

June 14, 2011

I’m listening to BBC Radio 4’s You And Yours. Mark Neary, father of Steven, is on the programme, and the mother of Simon from Winterbourne View also rang in. If you missed it, it’s available now  on BBC iPlayer.

A Blog Post By A Fellow Blogger Who Also Supports The Right To Live

June 14, 2011

http://twitter.com/#!/crip_tic/status/80590870629466112

Fast Forward Campaign

June 14, 2011

I have just been sent the press release below by Whizz Kids.

Whizz-Kidz is a charity organisation aiming to ensure that every child has the opportunity to be something special…a kid. But there are an estimated 70,000 disabled children in the UK who are waiting for the right wheelchair, a wheelchair that will mean they can get up to all the things that kids like to do. This wait often takes months, even years. In the meantime, children are missing out on their childhood as they’re unable to fully participate in family and school life, and keep up with their friends. And that’s where Whizz-Kidz comes in. We provide kids with powered and lightweight manual wheelchairs, specialist trikes, and other vital mobility equipment. And in every community kids are having fun at our amazing wheelchair skills courses, meeting and making friends at our Ambassador clubs, and gaining the life skills they need for when they grow up.

 

Whizz-Kidz is currently working on a campaign called Fast Forward. We’re calling on the government to Fast Forward reform of NHS wheelchair provision for disabled children and young people. This will ensure that all disabled children in the UK can access the right mobility equipment and ongoing support that they need without undue delay. The government has made a commitment to reform NHS wheelchair services on many occasions. We would like to ask the government to Fast Forward improvements to NHS wheelchair provision for disabled children.

 

We have started an online petition for the Fast Forward campaign and we want to reach 70,000 signatures to represent the 70,000 disabled children in the UK waiting for a wheelchair. Below is the link to sign the e–petition. You can help us achieve our goal by signing the petition yourself, and asking your friends to sign it and pass it along to their friends. Another way to help would be posting the short link on your Facebook, MySpace, Bebo, Twitter or any other social networking sites. All the help you are willing to give is greatly appreciated by the staff here at Whizz-Kidz along with the children who are still waiting for their childhood to begin.

http://bit.ly/fastFWD

My Personal Thoughts On Terry Pratchett’s Documentary And Assisted Death

June 14, 2011

I’ve lived with a physical disability since birth. I hate to be told that I ‘suffer’ from my condition- because I don’t suffer. I don’t know any different. For me, life with a disability is ‘normal.’ I’d like to think I’ve made the best of the life I’ve had so far, and that I will continue to make the best of my life for as long as it lasts.

Last night, I watched Sir Terry Pratchett’s documentary, Choosing To Die, with interest, and some sadness. I was moved to tears by the scenes of Peter Smedley’s death. However, the idea of a person’s final moments being filmed and shown to members of the public is not the only thing that worries me about the programme, or the issue of assisted suicide.

As someone born with a disability who knows no different, I have never understood the idea of assisted dying. I have always believed that every life is equally valuable. I realise that disabled people need support- often a lot of it- to live- but personally- and I know there are many who will not agree- I believe that we should be given as much support as possible to live the best lives we can before we are told about the right to die.

I also realise that people who become severely physically disabled or terminally ill later in life, after they have known ‘normality,’ would not be likely to share my views on this issue. I can’t say I understand the feelings of someone who finds themselves in that situation, or that I can imagine how someone feels when they find themselves in that situation.

Personally, I think that the idea of assisted death comes from the way our society sees and treats sick and disabled people. People who become disabled or seriously ill have often spent most of their lives around others who see disability and serious illness as something negative. When they become disabled or seriously ill, they fear that they are going to suffer an unbearable amount of pain. Some even start believing that their lives are no longer valuable. However, this doesn’t have to be true. Personally, I think my disability has made me who I am. I have had so many positive experiences in my life as a direct result of having my disability- experiences I would never have had if I wasn’t disabled. I am glad to be alive, and would never choose to die before I have to.

Terminal illnesses, and most disabilities, shorten lives too much anyway. So rather than being encouraged to end our lives before they have to end by being taught that we have a ‘right to die,’ I wish that all disabled and terminally ill people could be taught how valuable their lives are. I wish people could stop automatically associating disability and serious illness with pain and suffering, and start learning and thinking instead about the positive things that sick and disabled people are able to do, with support, and in spite of the challenges they face.

I’m sure you’ve heard the story of Alice Pyne, the 15 year old who is using her own diagnosis of terminal cancer to think about all the positive things that she wants to do with the time she has left. She is handling her situation with more strength and maturity than most adults would show faced with something similar. Her story is proof that disability or terminal illness do not have to stop a person living life to the full.

Terry Pratchett Says Documentary Has Not Changed His Support For The Right To Die

June 14, 2011

Sir Terry Pratchett has said witnessing a man being helped to die for a controversial BBC film has not affected his support for assisted suicide.

In Choosing to Die, the 63-year-old author – who has Alzheimer’s disease – went to Switzerland to see a British man with motor neurone disease dying.

Liz Carr, a disability campaigner, said it was pro-suicide propaganda and that she was surprised the BBC had made it.

The BBC said Monday’s film would help viewers make up “their own minds”.

The programme, showed Peter Smedley, a 71-year-old hotelier, travelling from his home in Guernsey to Switzerland and taking a lethal dose of barbiturates given to him by the Dignitas organisation.

Dignity of life

Sir Terry, who made the film to establish whether he would be able to die at a time and in a way he wanted, said seeing what Dignitas did had not changed his mind.

“I believe it should be possible for someone stricken with a serious and ultimately fatal illness to choose to die peacefully with medical help, rather than suffer,” he told BBC’s Newsnight.

Asked about the sanctity of life, Sir Terry responded: “What about the dignity of life?” Lack of dignity would be enough for some people to kill themselves, he said.

He added that he believed the right to an assisted suicide should extend to anyone over the age of consent.

He also accused the government of “turning its back” on the issue of assisted suicide.

“I was ashamed that British people had to drag themselves to Switzerland at some considerable cost,” he said.

The BBC denied the screening could lead to copycat suicides and said it would enable viewers to make up their own minds on the subject.

The documentary maker Charlie Russell said the decision to film Mr Smedley dying had been given a lot of thought.

 “As a film maker I felt it was the truth and unfortunately we do all die,” he said. “It’s not very nice but that’s what happens to us all.”

Ms Carr said: “I and many other disabled older and terminally ill people, are quite fearful of what legalising assisted suicide would do and mean and those arguments aren’t being debated, teased out, the safeguards aren’t being looked at.

“Until we have a programme that does that, then I won’t be happy to move onto this wider debate.”

The Bishop of Exeter, the Right Reverend Michael Langrish, said: “I want to see much more emphasis put on supporting people in living, than assisting them in dying.”

He said: “The law still enshrines that sense of the intrinsic value of life. But the law ultimately is not there to constrain individual choice. It’s there to constrain third party action and complicity in another person’s death.

“That remains illegal. There may be ameliorating circumstances that can be taken into account. But the law remains clear and is there to protect the vulnerable.”

Debbie Purdy, who has multiple sclerosis, went to court to protect her husband from prosecution if he accompanies her to Dignitas.

‘Quality of life’

She said in a debate after the programme: “Politicians haven’t kept up.

“Lawyers and judges have been the only people who have been prepared to defend my rights… and my right to life and the quality of my life is the most important thing to me.”

In the last 12 years 1,100 people from all over Europe have been “assisted to die” by Dignitas.

A spokeswoman for the pressure group Dignity in Dying said it was “deeply moving and at times difficult to watch”.

She said: “It clearly didn’t seek to hide the realities of assisted dying. In setting out one person’s views on assisted dying, it challenges all of us to think about this important issue head on and ask what choices we might want for ourselves and our loved ones at the end of life.”

She said the current legal situation in the UK meant “not only are people travelling abroad to die, but there are also those who are ending their lives at home, behind closed doors, or with the help of doctors and loved ones who are helping illegally.”

‘Propaganda’

Dignity in Dying is calling for an assisted dying law with “upfront safeguards”.

But Alistair Thompson, a spokesman for the Care Not Killing Alliance pressure group, said: “This is pro-assisted suicide propaganda loosely dressed up as a documentary.”

Campaigners claim it is the fifth programme on the subject produced by the BBC in three years presented by a pro-euthanasia campaigner or sympathiser.

Mr Thompson said: “The evidence is that the more you portray this, the more suicides you will have.

“The BBC is funded in a different way to other media and has a responsibility to give a balanced programme.”

The BBC denied it was biased on the issue and a spokeswoman said the documentary was “about one person’s experience, Terry’s journey exploring the issues and the experience he is going through”.

“It is giving people the chance to make their own minds up on the issue,” she added.

The documentary, Choosing to Die, and the debate on BBC’s Newsnight are both available to watch on BBC’s iPlayer.

Terry Pratchett Choosing To Die: Reviews Linked

June 14, 2011

In this post, I will link to any reviews of Sir Terry Pratchett’s documentary, Choosing To Die, that I can find online.

  • First, this from the Telegraph, published yesterday, just after the programme aired.
  • This from the Guardian, also published yesterday.
  • This from the Independent, published after midnight today.
  • This by Fergus Walsh at the BBC, published at 7pm today.

Who Are The Scroungers?

June 13, 2011

Many people on my Twitter list are adding to the hashtag #whoarethescroungers at the moment- I think it’s another Broken Of Britain Twitter campaign. Anyway, it’s making me smile, so if you feel like a bit of fun, please check it out.