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Anyone Can Become A Carer

June 13, 2011

I love the A to Z of Carers in this post… so in celebration:

http://twitter.com/#!/CarerWatch/status/79858630475792384

Disabled People Face Discrimination On Public Transport, Finds Survey

June 13, 2011

A poll found that nearly half of people with disabilities suffer discrimination on buses and trains by passengers who object to giving up seats or being inconvenienced.

Alice Maynard, chairman of the disability charity Scope, said in some cases the abuse was so severe that victims felt unable to leave their homes.

Miss Maynard, herself a wheelchair user, said she regularly faces verbal attacks from able-bodied passengers while boarding trains.

She said she and her personal assistant are sworn at on a weekly basis by commuters angered by having to vacate seats reserved for disabled passengers.

Miss Maynard said: “I think it is getting worse. It happens once or twice a week — aggression, swearing.

“I think it is increasing because of the pressures on people: the overcrowding on trains and the general economic climate.

“If I reminded myself about everything that has been said, I would shut myself inside.”

A Scope survey revealed that 47 per cent of disabled people faced some form of discrimination while travelling on public transport. Of these, 15 per cent said they faced “high-level” abuse.

The Equality and Human Rights Commission claims that public transport is one of the “hot spots for violence and harassment targeted at disabled people”.

It will set out the scale of the discrimination in a report to be published this autumn.

The Terry Pratchett Choosing To Die Documentary Open Thread

June 13, 2011

In a first for Same Difference, this is an open thread for any discussion about two documentaries which will air today, or the issues they raise.

First, at 9pm on BBC Two:

In a frank and personal documentary, author Sir Terry Pratchett considers how he might choose to end his life. Diagnosed with Alzheimer’s in 2008, Terry wants to know whether he might be able to end his life before his disease takes over.

Travelling to the Dignitas Clinic in Switzerland, Terry witnesses first hand the procedures set out for assisted death, and confronts the point at which he would have to take the lethal drug.

Then, at 10pm on BBC Two:

Jeremy Paxman speaks to Terry Pratchett about his documentary, and a panel of studio guests debate the controversial issues surrounding assisted dying.

Please share any thoughts you may have in the comments below.

It’s Carers’ Week 2011

June 13, 2011

Carers’ Week 2011 starts today. This year’s theme is The True Face Of Carers.

Please use this week to celebrate carers, and to raise awareness of the very important and very hard work they do all day, every day. I am the child of parent carers and all I can say is that I don’t know where I’d be without them.

More Than Half Of Disabled Londoners Experience Hostility, Finds Survey

June 12, 2011

More than half of disabled Londoners have experienced hostility, aggression or violence from a stranger because of their disability, a survey suggests.

The figures come from a ComRes poll of 2,050 disabled people across the UK.

Disability charity Scope, which commissioned the survey, warned a disability benefit crackdown was increasing prejudice.

The Department for Work and Pensions insisted those unable to work would get support.

Half of London respondents to the poll said they experienced discrimination on a daily or weekly basis.

It also found that 63% of people with disabilities in London thought others did not believe they were disabled.

State handouts

Just under half felt others presumed they were not in employment.

Planned government changes to the welfare system would see 1.9 million people on incapacity benefits being tested for their fitness to work.

The government thinks hundreds of thousands of people living on state handouts are in fact fit to work.

Scope chief executive Richard Hawkes said: “Much of the welfare reform debate has focused on disabled people as benefit scroungers.

“Many disabled people feel this has led to the public being more sceptical about disability issues.”

Mr Hawkes said the debate may lead to the public being “more hostile” to those who receive welfare support.

He continued: “Ironically this backdrop of negativity will only make it harder for the million disabled people who will be migrated off benefits to actually get a job.

“The support disabled people receive from government enables them to overcome the barriers they face in daily life.

“However, recent government spending decisions look to be eroding away the very foundations of this support.”

A Department for Work and Pensions spokeswoman said: “Abuse of this kind is unacceptable.

“We are clear our reforms are about helping people who can do some form of work back into employment, but equally those who cannot work can expect to get all the help and support they need.

“We know that a lot of disabled people want and expect to compete for jobs and we want to give them the support to do that.”

Kent Care Home Closed In Abuse Fears

June 11, 2011

A Kent care home has been closed down and its eight residents moved out after its registration was cancelled.

The Care Quality Commission (CQC) said the registration of Sea View Lodge in Herne Bay was cancelled on Wednesday after concerns of neglect and abuse.

The home, for elderly people and those with learning disabilities, had residents aged between 25 and 80.

Owner Shahid Sheikh said he denied any allegations and the matter was being handled by his solicitor and barrister.

He said residents were in tears as they were moved out of the home and that he and his family had been left with no income.

Kent County Council (KCC) said on its website that it suspended new placements to Sea View Lodge on 27 May because of poor practise.

‘Safety and welfare’

Five of the residents have been placed in respite care and three in nursing homes.

The CQC said it made an urgent application to Canterbury magistrates on Wednesday to cancel the home’s registration.

“We acted quickly to protect the safety and welfare of people at Sea View Lodge,” it said in a statement.

“Closing a care home is not a decision taken lightly. In some cases, moving frail and vulnerable people can cause more harm than good.

“However, it became clear that the only way to properly protect residents at Sea View Lodge was to close the home immediately, and move residents to other locations where care is of a better standard.”

The CQC last inspected Sea View Lodge on 8 June 2010 and gave it a two-star “good service” rating.

Winterbourne View: Date Set For Serious Case Review

June 11, 2011

A serious case review into alleged abuse at a residential hospital for vulnerable adults near Bristol has been set for July.

South Gloucestershire Council said it would examine “the effectiveness of the safeguarding system and processes” at Winterbourne View hospital.

Secret filming by BBC’s Panorama programme showed residents being pinned down, slapped and taunted.

Eleven people have been questioned and bailed by police.

It emerged on Thursday that council staff may have been been told five times in two months about fears of abuse at the privately-owned hospital.

Peter Murphy, director of community care at the council, said they received an e-mail expressing concern about the hospital five months before filming took place.

He said he did not realise the extent of the problems but that his staff did follow up the concerns.

Mr Murphy said he did not believe he should resign.

‘Actions agreed’

“We received an e-mail from the manager of Winterbourne View in late October which set out a range of concerns around poor practice in the hospital,” Mr Murphy said.

“It’s important to stress that those allegations within the e-mail were nothing compared to what we saw and shocked us on the Panorama programme.”

Mr Murphy said the abuse he saw on the programme had sickened him.

He said: “Our safeguarding manager made contact with Winterbourne View, there was telephone contact straight away. That was followed up by further discussions.

“The Care Quality Commission (CQC) were then engaged in those discussions and a set of actions were agreed.”

He said the actions were not agreed until February.

‘Whistleblowing episode’

“We have to go back and look at the whistleblowing episode and conduct an in-depth inquiry into the decision making processes which led us from receiving the e-mail in October and having a meeting in February,” he said.

The Safeguarding Adults Board has appointed Margaret Flynn to chair the review.

Ms Flynn, who is chairman of the Lancashire Safeguarding Adults Board, has conducted many serious case reviews across the UK and is also joint editor of the Journal of Adult Protection.

The vulnerable patients filmed by Panorama have been moved to safety.

There will be more on this story on the Politics Show on BBC1 at noon on Sunday.

Friday Fun

June 10, 2011

http://twitter.com/#!/suey2y/status/79170515775926272

Yvonne Freaney Sentencing Adjourned

June 10, 2011

The sentencing of a mother who killed her severely autistic 11-year-old son has been adjourned.

Yvonne Freaney, 49, of Penarth, Vale of Glamorgan, was convicted last month of the manslaughter of her son Glen at a hotel near Cardiff Airport in May 2010.

She denied murder but admitted his manslaughter on the grounds of diminished responsibility.

The hearing at Cardiff Crown Court was adjourned to consider further reports. Freaney was remanded in custody.

John Charles Rees, defending, said she had now served the equivalent of two-and-a-half years in custody. She is due to be sentenced before July 15.

When she was convicted in May, the jury decided she was suffering under extreme mental stress at the time she strangled her son with a coat belt.

‘Sad, defeated woman’

She told police she killed Glen so “no one could point fingers at him”, and wanted to end her own life too.

The court heard she was discovered in the Sky Plaza hotel room at Rhoose, Vale of Glamorgan with multiple knife wounds, but still alive.

Prosecutors argued that she was a “sad, defeated woman” but was acting sanely at the time.

Mr Rees said: “It was unlawful but she did not kill Glen out of anger.”

The Guardian Revisits Riven Vincent

June 10, 2011

Four months on from her Mumsnet post and the media storm that followed, yesterday the Guardian caught up with Riven Vincent for an extended interview, linked here for anyone who followed her case.

My Guardian Blog Post On Winterbourne View

June 9, 2011

I’ve written another piece for the Guardian blogs, this time on the case of Winterbourne View and what should happen next.

Amputee Woman’s Facebook Fetishist Warning

June 9, 2011

A Windsor campaigner has warned of the dangers of social networking after being targeted by men who are attracted to amputee women.

Charlotte Fielder, who was born missing a hand, has been awarded an MBE for her work helping people who are “limb deficient” with the charity Reach.

After signing up to Facebook, she found her profile image had been copied and posted on a pornographic website.

Her image was subjected to obscene comments by men attracted to amputees.

The image used was one of Mrs Fielder fully-clothed.

She said many women amputees she knew had been contacted by so-called “devotees”.

Mrs Fielder, 47, said she joined Facebook in 2008 and used it to keep in touch with people she helps.

When speaking to a female athlete from the British Paralympic Team she discovered her image had been used for pornographic purposes.

Sexual attraction

She said: “The same thing happened to this Paralympic athlete. She said it almost ruined her career, because people kept using her images for these devotee websites.

“Most amputees want nothing to do with devotees, because they see us as objects.”

Mrs Fielder said in her experience most female amputees had experienced their photographs being used by “devotee” websites.

She said: “There are men who target women with limb deficiencies, because it’s their primary sexual attraction.”

Mrs Fielder said most of the men who contacted her were based in the United States. Many pretended to have missing limbs and tried to contact her as friends on Facebook.

She said: “Facebook have told me to block them, but they just come back with a different name.”

Mrs Fielder said she was particularly worried about the effect it might have on young women who were struggling to come to terms with the loss of a limb while growing up.

She said: “I’m a 47-year-old woman but younger girls aren’t aware. These men are out there, they lie and pretend to be limb deficient to make friends with people.

“Teenagers with limb deficiencies have enough issues. It’d be like growing up with the biggest spot in the world on your nose.

“When I was young I’d always keep my stump in my pocket.”

A spokesperson from Facebook said it had a policy that people should only add people they knew as friends.

It said people could adjust their privacy settings to prevent images being copied.

Hillingdon Council Held Steven Neary Unlawfully

June 9, 2011

A west London council acted unlawfully by refusing to allow a 21-year-old autistic man to be placed in the care of his father, the High Court ruled.

Hillingdon Council detained Steven Neary, of Uxbridge, for almost a year after he was taken into a “positive behaviour unit” in December 2009.

Mr Neary was allowed back home to his father Mark, 52, last December.

The council said it had Steven’s “best interests at heart” but had let the family down.

Mark Neary told the Court of Protection that he viewed the care by the council as a temporary move and expected his son to return home by January 2010.

But the council told the court that staff had concerns about Mr Neary’s “challenging” behaviour and weight, and argued that the care was intended to be for a longer period.

‘Lost my son’

Mr Justice Peter Jackson had reserved judgment last month after hearing evidence in the case.

Ahead of the ruling Mark Neary said: “I had been ill and agreed for Steven to go to his normal respite place. It was only meant to be for three days.

“There and then the council decided to move him to this behaviour unit.

“Initially I was in a state of shock. Then in April they started to serve deprivation of liberty orders which meant he could not come home.

“I felt helpless. I felt I had let him down, lost my own son.”

‘Genuinely committed’

Following the ruling Linda Sanders, director of social care at Hillingdon Council, said: “It is clear that there have been times when we have let both of them down.

“Cases such as Steven’s are hugely complex and we always have to carefully balance what we think is right for an individual with the wider issues such as the safety of the public.

“As the judge has said in his findings, at all times my staff were genuinely committed to ensuring that we did the right thing for Steven and had his best interests at heart.

“We recognise that we need to improve our processes and that we should have kept Steven’s father more involved during the time that we cared for Steven.”

Steven Neary has been staying with his father after leaving a local authority unit under an interim court order that allowed him to return home in December 2010.

Winterbourne View: Two More Arrests

June 9, 2011

Two more people have been arrested in connection with the alleged abuse of vulnerable adults filmed by Panorama at a residential hospital.

Secret filming by the BBC programme broadcast last month showed residents being pinned down, slapped and taunted at Winterbourne View, near Bristol.

Police investigating the matter confirmed a further two men, aged 26 and 32, had been arrested and bailed.

Eleven people have now been questioned in connection with the inquiry.

Earlier this week police arrested two women, aged 22 and 21, and three men, aged 58, 40 and 28. Last week, a woman and three men were arrested.

All have been released on police bail.

‘Safeguarding concerns’

On Wednesday, it was revealed that South Gloucestershire Council staff may have been been told five times in two months about fears of abuse at Winterbourne View.

An e-mail from the hospital manager last November said “five safeguarding concerns” appeared to have arisen.

It is thought this may refer to concerns raised with the council’s Safeguarding Vulnerable Adults panel.

The e-mail, sent by the manager to support workers and nurses and seen by the BBC, said patients had complained of ill treatment.

It said they had allegedly been teased, forced to swallow medication, threatened, restrained when it was not warranted and called nicknames which other patients then used.

The private home, which is taxpayer-funded, is to be investigated by the Care Quality Commission.

Hospital owner Castlebeck has apologised and suspended 13 employees – including the manager who wrote the e-mail.

The vulnerable patients filmed by Panorama have been moved to safety.

Kaliya Franklin On Wheelchair Provision

June 9, 2011

Kaliya Franklin, better known here as Bendygirl, has written an article for today’s Guardian about her wait for a wheelchair, and what wheelchair waiting times mean for disabled people.

Axe Sheltered Workshops Like Remploy, Says New Report

June 9, 2011

This could be progress, but as I’ve said before, it will require a lot of training for most mainstream employers first. Without training, this could be a big step backwards for disabled people.

Disabled people should be treated as part of the mainstream labour force and should no longer be employed in sheltered workshops, a report to the government is recommending.

More people with disabilities could find jobs if existing funding for employment support was spent more efficiently, according to the report, which could spell the closure of the remaining sheltered factories run by the Remploy state agency.

The future of the heavily-subsidised Remploy factories has been a controversial issue. Under the Labour government, 29 units were closed, but a vociferous campaign led to 54 being kept open while concerted efforts were made by national and local government to give them more work. However, few extra contracts have materialised.

The factories employ 2,800 people, each subsidised by £25,000 a year, although about 600 are planning to take voluntary redundancy.

The report, published on Thursday, was commissioned by Maria Miller, minister for disabled people, from Liz Sayce, chief executive of the disability charity Radar. Sayce, a known critic of sheltered employment, found “a total consensus among disabled people’s organisations and charities that segregated employment is not a model for the 21st century”.

The report calls for:

• A doubling of the numbers of people able to use the government’s £98m-a-year Access to Work scheme, which helps employers adapt jobs and workplaces for disabled people.

• A shift of funds from sheltered employment to enable 100,000 disabled people annually to be helped into mainstream jobs. Remploy itself is aiming to support 20,000 people in this way by 2013, although about a third of the overall government budget for employment support currently goes to its factories.

• A rethink on spending on residential training colleges, which last year found employment for just 230 people at a cost of £78,000 each.

Sayce said: “The work aspirations of disabled people have changed. Again and again, disabled people – especially young disabled people – said they wanted the same choice of jobs as everyone else.”

Miller stressed there would be no cut in spending on employment support, but she said: “Disabled people are part of mainstream society and that means being part of the mainstream workplace. It is vital that government departments work together to realise the aspirations of disabled people and to support them to achieve those aspirations.”

The report is certain to trigger an angry response from trade unions representing Remploy factory workers. The TUC has warned that no factory closures should be contemplated until the economy picks up and workers stand a better chance of finding employment elsewhere.

Alice’s Bucket List

June 9, 2011

Alice Pyne’s story has to be one of the saddest I’ve ever heard. She’s 15, terminally ill with cancer- and she’s made a bucket list. The story’s stuck with me because it reminds me of a great book I read last year- Before I Die by Jenny Downham.

At the top of Alice’s bucket list is getting everyone to become a bone marrow donor. Something a little more light-hearted that she wants to do is trend on Twitter.

Since everyone’s talking about Alice’s bucket list, I thought I’d ask you- what would you put on yours? Personally, before I die, I’d love to write a book and have it published.

One In A Million- A Film By The Hello Campaign

June 8, 2011

Winterbourne View Discussed In House Of Commons

June 8, 2011

http://twitter.com/#!/CarerWatch/status/78511142095421441

Emmerdale’s Jackson Walsh Assisted Suicide Scenes Lead To OfCom Complaints

June 8, 2011

Emmerdale’s Marc Silcock has insisted that programme-makers ensured that the death of his character Jackson Walsh was not glorified.

TV regulator Ofcom is assessing complaints about tetraplegic Jackson’s assisted suicide, which was screened on Tuesday night, showing him take his own life after being given a cocktail of drugs by his lover, Aaron.

But Marc said: “We ensured it wasn’t beautiful – it is horrific, because it’s a horrific thing.

“Some people might have liked to have seen soft music in the background and for Jackson to slowly drift off to sleep. But that’s not reality and not what happens. We didn’t want to glorify it for one second.”

The watchdog said that it had received a handful of complaints about the soap’s plot, which saw tetraplegic character Jackson Walsh take his own life after being given a cocktail of drugs by his lover.

The dramatic scenes were shown on ITV1 at around 7.30pm, well before the 9pm watershed.

Ofcom will assess whether the scenes may potentially have breached any harm and offence rules. No decisions will be made until the storyline concludes.

Scenes of a real assisted suicide have previously been cleared by the regulator when screened in a Sky documentary in 2008.

Viewers have seen Emmerdale character Jackson struggling to come to terms with his paralysis following an accident and choosing to die.

How do you feel about the storyline, readers?

Poor Not Good Ok Good Excellent

Claire Khaw’s Thoughts On Winterbourne View

June 8, 2011

I’ve just found Claire Khaw’s blog post on the Winterbourne View case. I’m shocked. I shouldn’t be, but I am.

Also thought some of you might be interested in joining this Facebook group, which I’ve also just found. It’s called Disabled People Against Claire Khaw.


Ari Ne’eman

June 8, 2011

Ari Ne’eman rubs some people up the wrong way. Why? Because he is an outspoken autism campaigner who has risen to prominence in the US by demanding that policymakers and wider society stop trying to “fix” autistic people or “make us normal”, and concentrate instead on including people with the condition in the decisions that affect their lives.

Ne’eman, who is in the UK to give a series of talks, claims that for too long even the most well-meaning advocates in the US and in Britain – including parents – have been obsessed with moulding autistic people to fit with society’s expectations of “normal” behaviour.

Simultaneously lauded and vilified since founding the Autistic Self Advocacy Network (Asan) as a teenager just out of high school in New Jersey, Ne’eman, now 23, is a polarising figure. He stirred up controversy by suggesting that more research investment be directed towards improving support for autistic people, rather than towards finding a cure to eliminate the condition.

When US president Barack Obama nominated Ne’eman to the National Council on Disability – a government body that advises legislators on disability policy – one critic equated the decision to sending a “blind surgeon” in to perform surgery.

Despite objections, Ne’eman’s appointment to the NCD was confirmed in July when he became the first known autistic person to serve on the body. It cemented his role as a leading light in the autism “self-advocacy movement” in America. It also placed him on a collision course with detractors who argue that he fails to grasp that “high functioning” people like him (he was diagnosed with Asperger’s syndrome, a condition on the autism spectrum, at age 12 and is an erudite communicator) cannot speak for those at the lower end of the scale who have much more serious impairments. Autism symptoms include difficulties picking up social cues and communication problems ranging from severe to mild.

Ne’eman says he is “happy to engage” with his critics but insists that they fundamentally misunderstand what he and others like him are trying to do. “There’s a lot of prejudice out there. But I think the majority of people aren’t prejudiced. The majority of people just don’t understand what our message is.

“The objective of autism advocacy should be to create a world that includes and supports autistic people rather than to create a world without autistic people. In short, we need to refocus autism education and research and interventions and policy towards a quality of life and a quality of opportunity agenda for all persons on the spectrum,” he says.

“I have a list of every research study funded from a major funder, public and private in the US, around autism in 2009,” he says, pulling pages from a pile of documents. “Less than 1% goes to research around adults. Only 3% goes to research around services. The vast majority is focused around causation, detection, ideas around prevention and cure.

“What aggravates me is the idea that it’s so inconceivable that we should have something to say about our own lives”.

When he talks about his early life and how he felt “knowing I was different but not knowing why” until he was diagnosed, it is clear to see why Ne’eman invests so much of his energy in autism advocacy (he is also on several general disability rights panels in an advisory or part-time capacity). He talks about “a tremendous amount of bullying at school” and of how teachers didn’t understand him, either in the mainstream schools he attended or in the “segregated” school he was placed in for a short while after diagnosis.

“My experiences growing up with the bullying, the social exclusion, being placed in a segregated educational environment and suffering from the low expectations that are too often present for students with disabilities – they have all directly shaped my advocacy work and my policy work today.

“People, society, told me that I wasn’t any good, that I shouldn’t have the opportunity to achieve the things I wanted to achieve in life, and I rejected that. I ran away from those kinds of assumptions about my diagnosis.”

His parents were important advocates for him growing up, Ne’eman says, but as he got older the systemic and cultural obstacles he, and other autistic people faced, galvanised him to set up Asan. Now represented in 15 US states and affiliated to numerous disability organisations across America, the organisation has ambitious goals. It started as a policy-focused lobbying organisation but has since evolved to address broader, “much more challenging” wider societal attitudes. Ne’eman positions his campaigning firmly within the broader civil rights struggles. It is, he says, about empowering people.

Projects run by Asan include producing a series of leaflets for young people with autism on how to navigate high school and initiatives to foster “young autistic leaders” at college and beyond. The organisation also makes a point of directly challenging “offensive and damaging media stereotypes and advertising that talks about us without us,” he says.

Understanding the big picture, as well as the minutiae of policy and personal experience, is critical to advocating successfully, Ne’eman stresses. He believes that the disability rights movement for autistic people is “decades behind” the wider disability rights agenda and that this has led to policymakers in the UK and US, in particular, systematically excluding people with autism when “they wouldn’t dream” of doing the same to other, more established disability rights groups. “There hasn’t been the recognition in both countries that the [autistic] population needs to be included in the conversation,” he says.

If anything frustrates Ne’eman it is that for all the opprobrium he faces, the central tenant of his argument – “having a seat at the policy table” – is far from radical. “These ideas wouldn’t even be considered controversial in the general disability world. This isn’t anything other than basic common sense. You should involve autistic people instead of trying to make autistic people ‘normal’.”

Guardian Interview Dame Jo Williams About Winterbourne View

June 8, 2011

In case anyone wants to read this from yesterday’s Guardian.

Still More Arrests After Winterbourne View Investigation

June 8, 2011

An update on yesterday’s post about two women being arrested.

Police investigating alleged serious abuse at a care home near Bristol after undercover filming by BBC Panorama have arrested five more people.

The programme alleged serious abuse was carried out at Winterbourne View Hospital – a private care home for people with learning disabilities.

Police arrested two women, aged 22 and 21, and three men, aged 58, 40 and 28.

Last week, a woman and three men were arrested. All nine have been released on police bail pending more inquiries.

The programme showed some of the hospital’s most vulnerable patients being repeatedly pinned down, slapped, dragged into showers while fully clothed, taunted and teased.

The hospital’s owners, Castlebeck, have apologised and suspended 13 employees.

‘Sickened’

Three men – aged 42, 30 and 25 – and a 24-year-old woman were arrested following the broadcast of the programme last week.

The hospital, which is taxpayer-funded, is to be investigated by the Care Quality Commission.

Labour leader Ed Miliband has called for an independent inquiry into the alleged abuse, saying he was “sickened” by what the programme showed.

The Care Quality Commission has said, following an internal review, that it recognised that “there were indications of problems at this hospital which should have led to us taking action sooner”.

“We apologise to those who have been let down by our failure to act more swiftly to address the appalling treatment that people at this hospital were subjected to,” it said.

The vulnerable patients filmed by Panorama have been moved to safety.

Winterbourne View Panorama Investigation: Two More Women Arrested

June 7, 2011

Police investigating alleged serious abuse at a care home near Bristol following undercover filming by the BBC’s Panorama have arrested two women.

The programme alleged serious abuse was carried out at Winterbourne View Hospital – a private care home for people with learning disabilities.

The women, aged 22 and 21, were questioned by Avon and Somerset Police and were released on bail.

Last week, another woman and three men were arrested and released on bail.

The programme appeared to show some of the hospital’s most vulnerable patients being repeatedly pinned down, slapped, dragged into showers while fully clothed, taunted and teased.

The hospital’s owners, Castlebeck, have apologised and suspended 13 employees.

‘Sickened’

Three men – aged 42, 30 and 25 – and a 24-year-old woman were arrested following the broadcast of the programme last week.

The hospital, which is taxpayer-funded, is to be investigated by the Care Quality Commission.

Labour leader Ed Miliband has called for an independent inquiry into the alleged abuse, saying he was “sickened” by what the programme showed.

The Care Quality Commission has said, following an internal review, that it recognised that “there were indications of problems at this hospital which should have led to us taking action sooner”.

“We apologise to those who have been let down by our failure to act more swiftly to address the appalling treatment that people at this hospital were subjected to,” it said.

The vulnerable patients filmed by Panorama have been moved to safety.

 

Sir Terry Pratchett Wants ‘Suicide Kits’ For Terminally Ill

June 7, 2011

Any thoughts, readers?

Sir Terry Pratchett, the author, believes doctors should be able to prescribe a take-home suicide kit which would be “close to the ideal” way for terminally ill people to end their lives.

In a fresh appeal for the legalisation of assisted suicide, he said he was “angry” that British people had to go abroad if they wanted to be helped to die, because it meant they were committing suicide earlier than they would do if they could simply take a “magic potion” in their own home.

Sir Terry, 63, who has a rare form of early-onset Alzheimer’s disease, accompanied a motor neurone disease sufferer to the Dignitas clinic in Switzerland for a controversial new documentary to be shown on BBC2 next Monday, which includes the moment of the man’s death.

It will be the first time a suicide has been shown on terrestrial television.

In an interview for Radio Times, Sir Terry said he believed the man named only as Peter, aged 71, was left with no choice but to commit suicide earlier than he would have liked, because he had to go to Switzerland before he became too ill to travel.

“That’s what makes me so angry,” he said. “Because I am absolutely sure that if Peter had not had to go to Dignitas, he would probably still be around now if there was somewhere in England he could have gone to, when it did become too much for him.”

He called for “an examination of the methods of assisted dying so that we may consider what it best…what suits the British” and said he favoured a system legalised in the US state of Oregon in 1997.

“If the doctors agree that you are, as it were, a candidate, they give you the magic potion and you can take it away and keep it at home, preferably, I suppose, not in a bottle marked lemonade. That is possibly close to the ideal.

“What I like about it is the fact that because someone knows they can die when they want to, they can treasure every day. They can think ‘the grandchildren are coming over tomorrow’ or ‘it’s nearly Christmas so I’ll leave it till the New Year…it’s a bit painful but we can hang in there.”

The BBC2 film has led to criticism of the BBC as a “cheerleader for assisted suicide” but Charlotte Moore, the corporation’s commissioning editor for documentaries, defended the decision to screen the moment at which Peter dies, saying: “I don’t see how we could omit it”.

She added: “To gloss over Peter’s final moments would be to do a disservice to Peter, to Terry and to the viewer. We have a responsibility to tell the story in its entirety. How can we do this if we shy away from the crux of the story, difficult as this may be?”

Ed Miliband Urges Inquiry Into Winterbourne View Abuse

June 7, 2011

Labour leader Ed Miliband has called for an independent inquiry into abuse at a care home near Bristol, uncovered by the BBC’s Panorama programme.

He said he was “sickened” by the scenes at Winterbourne View and a Care Quality Commission probe was not enough.

A government source said an independent inquiry could be difficult while the police investigate the abuse.

Mr Miliband also made a “serious offer” of cross-party talks on the future of funding adult social care in England.

It follows Tory claims of a planned Labour “death tax” ahead of last year’s general election – which effectively ended previous hopes of getting cross-party agreement on funding adult social care.

Mr Miliband was speaking in London at his regular press conference – his first public appearance since his marriage two weeks ago.

His decision to speak out on social care follows the Winterbourne View revelations, the financial crisis at the UK’s biggest care homes provider Southern Cross and comes weeks before the independent Dilnot commission is due to report on the future of funding for adult social care in England.

‘Plain wrong’

Panorama uncovered a pattern of abuse at the privately owned Winterbourne View residential care home in Bristol – which led to 13 employees being suspended and four arrested. The government said at the weekend it would strengthen safeguards for vulnerable adults.

Mr Miliband said he was shocked and sickened by the scenes from Winterbourne View and called for an independent investigation into what happened.

“The government appears to believe that reviews by the Care Quality Commission and by South Gloucestershire Council are enough – it is not because these bodies were involved in the failure itself,” he said.

Last week it also emerged that Southern Cross, which runs 750 care homes, was having to reduce its rent payments as it struggles with its financial problems.

Mr Miliband said: “It is plain wrong that financiers creamed off millions, while as we now know the care of tens of thousands of elderly people was being put at risk. They seem to have been treated merely as commodities.”

He said it did not mean that “all private homes are bad” but that better regulation was needed of organisations’ finances – adding that the collapse of a major care provider could have consequences for the taxpayer.

Political consensus

Mr Miliband also said he wanted to make a “serious offer” of cross-party talks with Prime Minister David Cameron on the findings of the Dilnot commission into the funding of social care in England.

The commission was set up by the government last year and is due to report in July 2011.

Labour explored a number of options for reform of long term care for the elderly before the 2010 general election but the three largest parties failed to reach agreement on how to proceed.

Cross party talks broke down in March after the Conservatives launched a poster campaign claiming Labour was planning a £20,000 “death tax” to fund a National Care Service.

Mr Miliband said every previous attempt to resolve the issue had broken down – often due to the failure to find a political consensus.

“We will come to these talks with an open mind about the best way forward, not simply advocating what we have proposed in the past.

“But the principles are clear – high quality care for those that need it, funded in a fair way, with properly accountability for those who deliver the care.”

Asked what that meant for previous Labour care pledges – such as National Care Service, announced by Gordon Brown in his 2009 Labour conference speech – he said: “It doesn’t mean we are ditching our commitment… I’m still a supporter of that idea.”

But, he added, he would go into any cross-party talks with an open mind.

Able Radio: The Care Crisis

June 7, 2011

Today on Able Radio, I talked about last week’s Panorama investigation and what now needs to be done to reduce the risk of similar things happening again.

Swimmers Roberts And Kindred To Miss European Championships Through Injury

June 7, 2011

Paralympic swimming champions Dave Roberts and Sascha Kindred have both been forced to pull out of next month’s European Championships in Berlin.

Roberts has failed to recover in time from the broken elbow he suffered earlier this year.

Kindred, who is hoping to appear in his fifth Paralympic Games in London, has a back problem.

The championships run from 3-10 July and are the last major international event before London 2012.

Kindred will miss out on defending the 100m breaststroke title he has held since 1995.

“I am obviously really disappointed not to be able to attend the Europeans but I feel that with my ongoing back problem, competing at such a high level would have been detrimental for my recovery and my focus now will be on London 2012,” he said.

Welshman Roberts is Britain’s most successful Paralympian of the modern era, alongside compatriot wheelchair racer Baroness Tanni Grey-Thompson, with 11 gold medals.

But since the Beijing Paralympics, where he won gold in the 50m freestyle, 100m freestyle, 400m freestyle and 4x100m freestyle, he has had a number of injury worries including rib and shoulder problems, as well as kidney stones.

He said: “I am massively disappointed to be missing the European Championships. It was the final chance to test myself against the best in the world in Germany before the London Paralympics.

“Everything now points towards preparing meticulously with my coach for 2012. It’s a once-in-a-lifetime opportunity to compete at a home Games and for me, winning a 12th Paralympic gold would be a dream come true.”

Jennifer Clark

June 7, 2011

A Sunderland mother-of-six said she will have to learn to walk for the third time in her life after having both legs amputated.

Jennifer Clark was born with congenital bilateral talipes, which left her unable to walk.

Five years ago her feet were surgically removed. She then suffered from severe pain and decided to have her legs removed below the knee on 23 May.

She is waiting for her legs to heal before she can given prostheses.

The condition meant Ms Clark had no ankle or heel bones and had about 60 operations.

She had the first double amputation when the bone structure in her feet started crumbling and the second because of the debilitating pain.

Centre of balance

She said: “As a toddler you learn to have to walk then with all the accidents of falling down and bumping into things.

“Then, again, when I had the Symes [feet] amputation – [I had] new prosthetics and I had to learn how to put weight through them, how to stand up, how to ‘toddle’.

“It’s going to be the same this time. It’s learning a new centre of balance, a new way of walking.”

She hopes her prostheses will have more flexible feet on them.

While she is recovering she is writing a blog about her experiences.

She said: “It’s not just for me and the children to look back on but it’s for everybody who has been through an amputation.”

Jennifer Clark’s Blog

Neurology Care For UK Patients ‘Lacking’

June 7, 2011

Services for neurological conditions are poorly organised and do not meet patients’ needs, says a report.

The Royal College of Physicians and the Association of British Neurologists say many patients with conditions like epilepsy or Parkinson’s disease are unable to access specialist care.

They point to a lack of expert doctors in local hospitals and emergency departments.

The government agrees a shake-up of services is needed.

Neurological disorders are very common, making up about a 10% of GP consultations and emergency medical admissions.

The disorders include many different conditions, some very common, such as migraine and multiple sclerosis, and some rare, like motor neurone disease.

Together these conditions result in disability in one in 50 people in the UK.

But neurology services in the UK have mainly developed around large regional neurosciences centres with an emphasis on research and academic excellence.

This has left local services undertrained and understaffed, according to the report.

The UK also has fewer neurologists per head of population compared to other countruies – one per 125,000 in the UK compared to one per 40,000 in the US and the rest of Europe.

‘Poor organised services’

Patients admitted to hospital with an acute neurological illness are rarely seen by a specialist neurologist.

In contrast, those admitted for a stroke and other acute medical emergencies usually see the right specialist without delay.

The report calls for an expansion and improvement of local services with a shift in emphasis from scheduled to emergency care.

The chairman of the working party who produced the report, Dr David Bateman, said: “The recommendations when implemented will substantially improve local services: many can be achieved at little extra cost mainly by reorganisation of services.”

Steve Ford, Chair of the Neurological Alliance, said: “Patients with neurological conditions need to see the right specialist at the right time in the right place, but evidence shows clearly that this isn’t happening due to poorly organised services and not enough specialist care.

“We welcome the report’s timely publication and call on the government, at this important time of NHS reform, to place neurology at the top of its agenda.”

A Department of Health spokesman said: “This is exactly why we need to modernise the NHS. Support for people with long-term neurological conditions has not been good enough.

“Our plans put patients firmly in the driving seat with more control over their care, and give clinicians the freedom to prescribe the treatment they feel most appropriate.

“Improving commissioning and more integrated services are key to ensuring better care for patients.”

Eddie Kiidd Has Finished The London Marathon

June 6, 2011

Very well done to him!

Former stunt rider Eddie Kidd has completed the London Marathon – nearly two months after he started the race.

Mr Kidd, of Seaford, East Sussex, was left brain damaged after an accident in 1996 when he crashed his bike jumping across a drag strip.

He has been walking up to a mile a day since 17 April using a specially designed walking frame in aid of the charity Children with Cancer UK.

He crossed the finishing line on the Mall at 1830 BST.

Former boxer Michael Watson presented Kidd with his finisher’s medal.

Watson, who was in a coma for 40 days after a fight with Chris Eubank in 1991, said: “I am so inspired by Eddie. He is a true champion.”

Mr Kidd’s wife, Sami, said she thought it was his greatest achievement.

She said: “It’s incredible what he has done. It’s overwhelming.”

During the marathon the ex-stuntman was joined at various stages by film star Ray Winston, comics Bobby Davro and Joe Pasquale, and Madness frontman Suggs

Mr Kidd, who spent months training for the event on Brighton seafront, has so far raised more than £72,000.

Kate Belgrave On Respite Care

June 6, 2011

http://twitter.com/#!/hangbitch/status/77756839009325056

The Shocking Impact Of The Spending Cuts On The Sick And Disabled

June 6, 2011

Just a quick post to link to this article at Left Foot Forward by Sue Marsh. It’s well written but she makes some shocking predictions.

Lady Gaga Learning Sign Language

June 6, 2011

This is progress. How great of her.

LADY GAGA is to learn sign language so she can communicate with her deaf fans.

The wacky singer – whose Born This Way album is No1 in Britain and across the globe – plans to take lessons with a private tutor.

She has been inspired to take up ASL – American Sign Language – after watching YouTube clips of her deaf devotees signing along to her songs.

A source said yesterday: “GaGa’s already campaigned for gay rights in the States and has spoken out about political issues like immigration.

“Now she wants to make sure her deaf fans feel included too.

“Once she’s mastered sign language she’ll be able to respond to the videos that are online, and include signing in future live tours.”

GaGa, 25 – who sings in Spanish and German on Born This Way – has previously played gigs with a sign language expert by her side to interpret her lyrics for her deaf followers.

At a Washington gig last year the New Yorker dedicated her song Speechless to her hearing-impaired fans. She told them: “I wish I spoke your language.

“That’s really f****** beautiful. Everybody speaks the language of love and it’s so beautiful that music brings everyone together.”

Eye Implant Recommended By NICE

June 6, 2011

A drug-infused eye implant which treats a type of vision loss has been approved by the medicines watchdog in England and Wales.

Final draft guidelines from the National Institute for Health and Clinical Excellence (NICE) said the implant was suitable for some patients with macular oedema.

It is thought that 25,000 patients could benefit.

The Royal National Institute of Blind People said it was excellent news.

The macula is a specialised piece of the retina which has the job of dealing with colour and fine detail.

When a vein in the retina becomes blocked – retinal vein occlusion – it leads to inflammation and a build-up of fluid. This can cause macular oedema – a severe visual impairment.

The biodegradeable implant, Ozurdex, is injected into the eye every six months.

It slowly releases a drug, dexamethasone, which suppresses the inflammation and restores vision.

Professor Peter Littlejohns, clinical and public health director at NICE, said: “We are pleased to be able to recommend dexamethasone intravitreal implant for this condition.

“Retinal vein occlusion can be very debilitating and have a very profound effect on everyday life so this draft decision will be welcome news to all those affected.”

Barbara McLaughlan, from the RNIB, said the announcement was “excellent news, particularly for patients with central retinal vein occlusion, as this is the only licensed treatment available”.

“At RNIB we would urge PCTs not to force patients to wait for final guidance to be published on treatment with Ozurdex, but to start providing this sight-saving treatment immediately.”

Ian Pearce, a consultant and representative of the Royal College of Ophthalmologists, said: “The availability of a licensed, effective and now NICE-recommended treatment is a significant step forward for management of RVO patients.”

Eddie Kidd To Finish Marathon Today

June 6, 2011

Former stunt rider Eddie Kidd is expected to complete the London Marathon nearly two months after he started the feat.

Mr Kidd, of Seaford, East Sussex, was left brain damaged after an accident in 1996 when his bike crashed after jumping across a drag strip.

He has been walking up to a mile a day using a specially designed walking frame in aid of the charity Children with Leukaemia.

So far he has raised more than £72,000.

Mr Kidd spent months training for the event on Brighton seafront and has been walking the London Marathon route since 17 April.

His wife, Sami Kidd, said he was expected to cross the finishing line on the Mall at 1900 BST on Monday.

Trailer: Voices From The Shadows

June 6, 2011

http://twitter.com/#!/indigojo_uk/status/77454660218269697

 

Ministers To Strengthen Safeguards For Adults In Care After Panorama Investigation

June 5, 2011

Lets hope these promises are kept by the Government.

Vulnerable adults in care in England are to be given more protection from abuse, the government has said.

The pledge comes after a BBC Panorama investigation showed staff at a privately run hospital mistreating adults with learning disabilities.

Details of “safeguarding” boards like to those for vulnerable children are to be published within a fortnight.

Health Minister Paul Burstow said he was committed to strengthening the safeguards for vulnerable adults.

Mr Burstow told the BBC: “It comes as a surprise to people that the statutory basis for the safeguarding of vulnerable adults in this country is much weaker than that which exists for children.

“I’m committed to follow through on some recommendations we have received recently from the Law Commission to implement statutory safeguarding rules that will require the police the NHS, social services to work together.”

Punched and slapped

Mr Burstow had already accepted the need to introduce the changes, but the broadcast of footage of people with learning difficulties being punched, slapped and taunted by carers had focused public attention on the issue, officials said.

During five weeks spent filming undercover at Winterbourne View in Bristol, Panorama’s reporter captured footage of some of the hospital’s most vulnerable patients being repeatedly pinned down, slapped, dragged into showers while fully clothed, taunted and teased.

The hospital is a privately owned, purpose-built, 24-bed facility and is taxpayer-funded.

Four people have been released on police bail and 13 members of staff suspended by owners Castlebeck.

The care home regulator, the Care Quality Commission (CQC), gave an unreserved apology last week for failing to act on warnings by whistleblower Terry Bryan about the abuse.

Jody McIntyre Writes About His Case On Comment Is Free

June 5, 2011

Jody McIntyre has written this very good piece on Comment Is Free today, about his case and why he will be appealing the IPCC’s ruling.

Ben Baddeley Becomes Wembley Mascot For England Football Team

June 5, 2011

What a nice update.

A seven-year-old boy who was told he would always use a wheelchair has walked out on to the Wembley pitch with the England football team.

Ben Baddeley, from Newcastle-under-Lyme in Staffordshire has spastic diplegia cerebral palsy and should not be able to walk unaided.

But he walked alongside the England team as their mascot for the match against Switzerland.

He took his first steps after using a trike designed to strengthen his legs.

The £700 bicycle has strengthened the muscles enough that he has become able to walk without sticks.

Ben met the England squad before the European Championship qualifying match.

His parents, Amy and Gary Baddeley, said it was his first visit to Wembley.

Mrs Baddeley said: “It’s always been a dream of his to go to Wembley Stadium.”

Ben said he was “really excited” to be making the trip.

Although he is walking unaided most of the time he still has to wear splints inside his shoes.

But that has not stopped him playing football and Mrs Baddeley said the sport was also helping to build up his muscles.

“Playing football is helping him a lot with the everyday things,” she said.

“Turning corners, avoiding people when you’re in the street, every time he’s going there they’re teaching him things he’s putting into everyday life.

“The difference it’s making is huge.”

The Paralympian’s New Horse

June 5, 2011

In April Paralympic hopeful Ruth MacCarthy had a problem – she needed a horse so that she could compete for a place in the dressage team after her horse went lame.

Ruth had several offers of help but felt a special bond with Carlos, a horse owned by BBC Breakfast viewer David Marsh.

Ruth and Carlos are training near her home in Warwickshire and horse and rider are getting along famously.

John Maguire reports.

Britain’s Got Talent Final- Good Luck James Hobley!

June 4, 2011

It’s the final of Britain’s Got Talent tonight and I’m very pleased to say James Hobley will be participating. Same Difference and friends are sending out best wishes to him.

Update 10pm: James came 8th. A very good result. By participating in the competition, he has shown the whole of Britain that he is truly DisAbled. Well done James!

Here’s a video of his audition:

Eddie Kidd Nears End Of Marathon

June 4, 2011

Former stunt rider Eddie Kidd, who suffered brain damage in an accident, is nearing the end of the London Marathon route, which he began on 17 April with the rest of the competitors.

He has been walking up to a mile a day in aid of the charity Children with Leukaemia, despite the severe disabilities he suffered in the crash in 1996.

Mr Kidd, of Seaford, East Sussex, is expected to complete the walk on Monday.

Imagine You’re Four… A Review Of #Panorama

June 3, 2011

Written by Bendygirl for The Broken Of Britain Blog. Cross posted with permission.

Imagine you’re four. You love your parents, your friends, the way the light comes through your curtains early in the morning, twinkling on the walls while you wait in your princess room patiently for mummy and daddy’s wake up time. Your favourite things are pink ballons and fairies, when it’s all a bit confusing around you you know you’re safe as long as you can catch sight of those pink flashes and know mum and dad are close. You love to give cuddles, hugs so tight there’s no room to wiggle and when you get excited you rock back and forth from foot to foot, arms spiralling joyfully.

One day a new clipboard lady comes to see your mum and dad. You see them cry and decide you don’t like this clipboard lady, you wonder where the clipboard lady you remember has gone. Mummy and Daddy are sad so you hug them then fling yourself to the floor and scream so the clipboard lady will go away. It works so next time you decide to scream louder and kick your feet harder to be sure she’ll go before your mum and dad cry.

Next time the clipboard lady comes with lots of other people to take you away. Lots of big words you don’t understand like ‘aggressive’ ‘confrontational’ and ‘care order’ float around the room and you can’t see your pink balloons so scream and scream. Mummy and Daddy cry and tell you to be a good girl, that you’ll love your new home, it’ll be full of your favourite things to do, they’ll come to see you soon.

When you get there it’s all scary and wrong. It smells funny and the light doesn’t wake you up in the mornings anymore. No-one knows you like to be woken up by the light and they wouldn’t care if they did. The days are long, no painting or ponies like you’re used to to fill the time and no-one comes to give you cuddles when you’re sad. You cry alot and have tantrums. You’re used to pink balloons and fairies when you have a tantrum, but without being able to see that you just kick more wildly, especially when the carers come to sit on you and hit you.

You might be only four but you can remember the important things Mummy and Daddy spent 18 years teaching you. You know how to hold out your hand and say ‘NO!’ in a loud voice if someone tries to touch you, to say the police will come to look after you, to call out for your Mummy so she knows to come to you. Mummy and Daddy were so proud of you for being their big girl and learning these skills, you try to remember that as you lie on the floor of your shower, surrounded by grown ups shouting at you, throwing cold water all over you, sitting on you and choking you. You cry and cry for your Mum but it just makes the carers hit you more. Sometimes the nurses come along and you look at them while you’re on the floor, pinned beneath a chair, but then someone puts a blanket over your head so you can’t look at them anymore. The blanket’s brown and scratchy and you cry for your pink balloons while they hit you some more.

You don’t get days out anymore. There used to be a car and Mummy and Daddy took you places with swings and slides. Swings, slides, light through the leaves and being happy slip further and further away until you’re not sure there was ever a world beyond beige walls with no pink to hide in to bear the slaps, pinches and pushdowns that are your new routine. You’re sure you remember your parents though and cry for them every day. You don’t know the reason they can’t come to visit is that now you’re a hospital resident 80 miles away from home and the car had to go because you’re no longer entitled to the mobility component of Disability Living Allowance and the Motability scheme. Mummy and Daddy are getting older and they had to care for you instead of going out to work. You don’t know they’re going cold and hungry now they’re unemployed not carers, you only know that no-one comes to see you except the people who hurt you.

You don’t know someone in the hospital did care. That they reported the abuse you are experiencing repeatedly. To their manager, to their manager’s manager, to the Care Quality Commission. You don’t know because no-one did anything, nothing ever changes now, the torture is your daily routine. You don’t know the word for torture, but you could give a better account of what it means than a prisoner in Guantanamo.

You don’t know that in the world outside your torture chamber that people talk alot about double funding, scroungers and fraud. Of something called a deficit, the need to cut costs and protect the vulnerable. You don’t know that because all the talk is of stamping out fraud and you’re so vulnerable no-one knows you exist.

 

Speak Up, Says Sacked Whistleblower

June 3, 2011

A care worker from Somerset who turned whistleblower has called for others to speak up about poor standards, despite being sacked for taking action.

Her calls come after a BBC Panorama investigation revealed abuse at the Winterbourne View residential care home in Bristol.

In 2008 Lily Flurey first raised concerns to regulator the Commission for Social Care Inspection (CSCI) about the Moorlands Residential Care Home.

The owner of the care home, Ian Darbyshire, said her claims were inaccurate and invalid.

After being sacked, she took her case to an employment tribunal in January where she won “substantial” damages for unfair dismissal.

She did not want to disclose the sum awarded to her.

‘Nothing was done’

Mrs Flurey worked at the care home in Merriott from June 2006 to June 2010 when she was sacked after being handed a final warning.

She first made her complaint to the CSCI (now called the Care Quality Commission) in September 2008 having already raised her concerns to her manager about standards of care, such as some staff turning off emergency alarms so they could sleep or not bathing residents.

“A carer took residents into the bathroom where they were supposed to be getting bathed.

“They had Alzheimer’s and she wouldn’t bother to bath them and she would just sit down, wait about 10 minutes and they were absolutely dry.

“She had been caught quite a few times doing this. I reported this, but nothing was done,” said Mrs Flurey.

Continue reading the main story

“Start Quote

Go through the proper channels, go to your supervisor, your manager, go to the owner and if you get no joy, report them.”

Lily Flurey, whistleblower

The regulator noted the complaints made by Mrs Flurey and carried out an unannounced inspection on 23 September 2008.

It downgraded the care home’s status from two stars to zero, which means “the people who use this service experience poor quality outcomes”.

‘Not backed up’

However Mr Darbyshire disputed the claims of poor standards of care.

“They [claims] were not backed up by any facts whatsoever,” he said.

“In terms of the report, that triggered immediate inspection by social services.

“Three different social workers spent about a week-and-a-half coming into the home and found the home to be completely good, and completely the opposite of that report.”

The latest report by the CQC in November 2010 said the care home was “meeting all the essential standards of quality and safety we reviewed”.

Star ratings are no longer handed out by regulators.

Mrs Flurey said after turning whistleblower, the owner of the care home “started to make my life unbearable, he was accusing me of all sorts of things and was out to get me”.

Mr Darbyshire maintained she was sacked for “very good reason” because her conduct was “sometimes inappropriate” and she had bullied other staff members.

“The reason the tribunal decision went against us was because they decided quite arbitrarily not to look at the large number of witness statements we had,” he said.

Despite being sacked, Mrs Flurey said she had taken the right course of action.

“Go through the proper channels, go to your supervisor, your manager, go to the owner and if you get no joy, report them.”

There Was A Guardian Q&A Today About Panorama

June 2, 2011

I missed this, unfortunately, but there’s a useful round up and some links there now, including a new site for whistleblowers.

 

Housing Benefit Changes Put Disabled People At Risk Of Homelessness

June 2, 2011

Controversial government changes to housing benefit could see 11,000 young disabled people forced out of their flats, putting them at risk of homelessness, according to campaigners.

The homeless charity Crisis says the government’s own figures (pdf) show that almost one in five of the 62,500 people in England, Scotland and Wales affected by the proposed extension of the Shared Accommodation Rate (SAR) have a disability.

From 1 January 2012, single people aged 25-34 will only be able to claim housing benefit based on the cost of a room in a shared house rather than a modest one-bed flat, bringing them into line with existing rates for people under 25. The average loss will be £41 a week.

This will force many disabled people into housing that is inappropriate for their condition, said Crisis.

Although 4,000 of the most vulnerable disabled claimants will be exempt because they need help through the day or night, most ill and disabled people will be forced to move into cheaper accommodation, often outside the area where they live.

In a survey of housing professionals published by Crisis last month, 87% said they already had problems finding appropriate properties for people on SAR and 72% believed there was not enough shared accommodation in their area.

Leslie Morphy, chief executive of Crisis, said: “This disturbing cut will force people suffering serious physical disabilities or mental illness to share with strangers, even if it damages their health.

“Government claims that discretionary funding will be able to support those who need it just don’t add up.

“We are deeply concerned that some of the disabled people affected by this will end up homeless, and in the worst cases rough-sleeping.”

James, 31, from Coventry, who is on incapacity benefit, faces a cut of £43 a week in his benefit, which will force him to leave the small one-bedroom flat he has lived in since 2008.

He has Asperger’s syndrome, a form of autism; a hereditary condition that results in severe mobility problems; and has suffered from ulcerative colitis, a form of inflammatory bowel disease.

He says his Asperger’s makes it hard for him to live with strangers, and he fears that the stress of moving from his home will trigger health problems.

He says there are no affordable one-bedroom flats where he lives. “I think it’s going to be horrific. I just won’t have the money to stay where I am. It will basically be ‘look for the least terrible option’.”

James says he is frustrated by being unable to work. He says he has applied for jobs without success.

“One of the things I’m most frustrated by is people saying I’m workshy. This is not a ‘lifestyle choice’. I’m not living in luxury at the taxpayer’s expense, I’m living in penury at the taxpayer’s expense, and I hate it, I hate living on handouts.”

According to an equality impact assessment carried out by the Department for Work and Pensions, the average loss per week is £41, rising to £45 a week in the south east and £87 a week in London.

The highest losses will be incurred by young people renting in Camden (a loss of £116 a week), Brent (£111), Islington (£109), Tower Hamlets (£109) and Westminster (£108).

The Department for Work and Pensions said the measure, which it hopes will save £200m a year, was to ensure greater fairness so that people on housing benefit face similar “affordability choices” to those not on benefits.

Petition To David Cameron On Treatment Of Care Home Residents

June 2, 2011

Please sign this. I just did.

http://twitter.com/#!/KinrossGuy/status/76233215559483392

London Walkabout 2011: An Inclusive Charity Walk For The Walkabout Foundation

June 2, 2011

I’ve just received the information below from the Walkabout Foundation.

 

Since its inception in 2009, the Walkabout Foundation has organised a walk in a different location each year to carry out its mission. In August 2009, co-founders Luis and Carolina Gonzalez-Bunster walked 870km along the Camino de Santiago de Compostela in Spain and in September 2010, the foundation traveled to Italy to walk 250km along the Via Francigena in Italy.

 

For the very first time, the Walkabout Foundation is organizing a city walkabout, a 15km walk (with a shortened 5km option) in Central London on Saturday, June 18, 2011. Wheelchair riders and walkers alike will cross some of London’s most beautiful Royal Parks together, including Hyde Park, Green Park, and St. Jame’s Park. The designated wheelchair accessible route passes some of the city’s most renowned historical landmarks including Buckingham Palace. London Walkabout 2011 is London’s first ever truly inclusive charity walk, and geared up to be a fun family event, open to the public, where fitness and charity become one and the same.

 

London Walkabout 2011 is aimed at both raising money to buy wheelchairs for people in need in the developing world and also to continue research into paralysis cures.

 

WHO:

  • The Walkabout Foundation and an estimated 300-400 participants

 

WHAT:

  • A 15km through central London, traversing Hyde Park, Green Park, and St. Jame’s Park that brings together the disabled community with walkers from Greater London in an effort to raise funds for the Walkabout Foundation.
  • There is an option to do a shorter 5k walk.

 

WHERE:

  • London, United Kingdom: Hyde Park, Green Park, St. Jame’s Park
  • The walk will commence in Hyde Park Corner, pass the Serpentine,

Kensington Gardens, Wellington Arch, traverse the Mall, pass Marlborough Gate, and end at Hyde Park’s Band Stand

 

WHEN:

  • Saturday, June 18, 2011 – 10:00 am

 

WHY:

  • The aim of the walk is to:
    1. promote awareness for paralysis and disabilities
    2. raise funds for the Walkabout Foundation

 

HOW:

  • Each participant is required to register for the walk by emailing Londonwalkabout@thewalkaboutfoundation.org or by creating an individual fundraising page on the Walkabout Foundation’s website: http://walkaboutfoundation.org/events/london-walkabout-2011.html
  • The event is free and open to anyone and everyone. People are encouraged to fundraise whatever they can, be that £200 for a whole wheelchair or just £5.
  • Drop-by participants are also welcome on the day of the event.
  • The walk will commence and end at Hyde Park’s Band Stand near Hyde Park Corner.
  • Sponsors include KX Gym, Vitaminwater, Lola’s Cupcakes, Regatta, Net-A-Porter, BIOEFFECT, One Water, Pure Package, Upcakes, Nails Inc., Oakley Capital and Asda.

Minister Paul Burstow Orders Investigation Into ‘Inhumane’ Care Home

June 1, 2011

The Government has ordered an urgent review into the “inhumane” abuse of people with learning disabilities at a residential hospital filmed by BBC Panorama.

Police arrested four people after secret filming showed vulnerable adults at Winterbourne View, in Bristol, being punched, slapped and taunted by carers.

Three men, aged 42, 30 and 25, and a 24-year-old woman have now been released on bail by Avon and Somerset police.

Care services minister Paul Burstow ordered a “thorough examination” of the role of the Care Quality Commission (CQC) – the social care services regulator – and local authorities in the case.

He also asked the CQC to carry out a series of unannounced inspections of similar services.

Thirteen members of staff, including two managers, have been suspended by the hospital’s owners Castlebeck.

During five weeks of undercover filming in February and March, patients were seen being pinned down, slapped, doused in cold water and repeatedly taunted and teased.

Mr Burstow said: “The abuse of people with learning disabilities at Winterbourne View uncovered by Panorama is shocking.

“There can be no place for such inhumanity in care services. I have already asked CQC to undertake a series of unannounced inspections of similar services.

“There have been failures of inspection and adult protection which have exposed people to appalling abuse.

“I have already ordered a thorough examination of the roles of both CQC and the local authorities in this case. I am determined to strengthen the system of safeguarding to protect vulnerable adults from abuse.”

The Prime Minister’s spokesman said the case was “clearly very shocking” but insisted it was too early to draw wider conclusions.

Asked if CQC had sufficient resources, he told reporters: “Clearly there have been failures in this case. We need to look at that before drawing any conclusions.”

Winterbourne View is a privately-run hospital which cares for up to 24 patients, employs around 50 members of staff and is funded by taxpayers.

Bullying, taunting and abuse: Young campaigners put disability hate crime under the spotlight

June 1, 2011

I have just been sent the press release below by Trailblazers, part of the Muscular Dystrophy Campaign.

Bullying, taunting, intimidation and physical abuse of disabled teenagers and young people will be put under the spotlight from today, as a group of young disabled campaigners launch a nation-wide investigation into disability hate crime.

The Muscular Dystrophy Campaign’s Trailblazers, an award-winning campaign group of over 300 disabled people aged 16-30, have launched the study following reports of an increase in threatening and unlawful behaviour towards disabled Britons. Together they will examine how, when and where young people are experiencing hate crime, how offences are currently being dealt with and how to help ensure that serious incidents do not go unreported. The group plans to work with regional disability organisations, community groups, colleges and through social media to uncover the extent at which young disabled people are being affected and to find ways to tackle the problem.

Mindi Virdee (22) from Hayes, Middlesex, a member of the Muscular Dystrophy Campaign Trailblazers says that the group is concerned that young disabled people are often unclear on what types of negative behaviour should be reported or are worried that their concerns will not be taken seriously:

“Many young disabled people become accustomed to negative reactions to their disabilities. While extremely aggressive behaviour like physical abuse on grounds of somebody’s disability is often reported, bullying and verbal intimidation may not be. Threatening behaviour should not go unreported, and that includes casual insults, subtle bullying and bravado at a disabled person’s expense.

“The Trailblazers believe that these more covert types of victimisation are being commonly experienced by young disabled people, and that there is clear need to look at ways to address them – and to help young disabled people feel empowered to do so. Young disabled people need to work together to get under the skin of the problem, in order to tackle it.”

The Trailblazers, have campaigned on issues facing young disabled people including higher education, employment, access to leisure facilities and public transport, and set up the first Parliamentary Group for Young Disabled people at Westminster earlier this year. The group vote to choose the focus of each new campaign, with their hate crime investigation sparked by the bullying, intimidation and verbal abuse of a disabled female student by university security staff last year, and the poor handling of her case by senior staff. It follows figures released by disability charity Scope which show a marked increase in perceived discrimination against disabled people in the past year.

The Muscular Dystrophy Campaign’s Trailblazers project manager Bobby Ancil said:

“Disabled people have received a very raw deal in the media over the past year and the affects of this are becoming clear. The Trailblazers will be focusing on the impact on young disabled people specifically, talking to them about what they consider to be hate crime and what experiences they have – or are having – of it.

“We hope that this will be the first step towards changing the attitudes of the perpetrators and of young disabled people who do not feel able to report it.”

To find out more about the investigation or to get involved, please visit the Muscular Dystrophy Campaign Trailblazers website at www.mdctrailblazers.org.

The Muscular Dystrophy Campaign is the leading UK charity focusing on muscle-wasting disease. It has pioneered the search for treatments and cures for more than 50 years, and is dedicated to improving the lives of all children and adults affected by muscle disease.

We fund world-class research to find effective treatments and cures; provide practical information, advice and emotional support for individuals, their families and carers; campaign to raise awareness and bring about change; award grants towards the cost of specialist equipment; and provide specialist education and development for health professionals.

 

Yesterday’s Panorama On Abuse Of Disabled People: A Few Reactions

June 1, 2011

Last night, I watched the last few minutes of the Panorama programme on the abuse of disabled people in a care home, Winterbourne View. I am so far too upset by it to watch the whole thing. But there have been a few reactions which are worth linking to here.

Me On Jody McIntyre- Joe Public Piece

June 1, 2011

I’ve written another article for the Guardian‘s Joe Public Blog. This one is on the findings of the investigation into police treatment of Jody McIntyre last December.

Scapegoat: New Book On Disability Hate Crime

June 1, 2011

In today’s Guardian, Katharine Quarmby writes about disability hate crime and ‘mate crime’ and her new book on the topic.

Journal Science Asks Researchers To Withdraw ME Study Findings

June 1, 2011

The journal Science has asked the authors of a research paper, which linked chronic fatigue syndrome to a virus, to withdraw their findings.

It has also published an editorial expressing concern that the validity of the study was “seriously in question”.

The authors said they were “extremely disappointed” and that the editorial was “premature”.

An expert in the UK said any link with chronic fatigue syndrome, or ME, was a myth and the decision was inevitable.

In 2009, a study at the Whittemore Peterson Institute was published in Science which showed that DNA from a mouse virus, XMRV, was present in 67% of patients with chronic fatigue syndrome, but only 4% of the general population.

Science’s editor in chief, Bruce Alberts, said at least 10 studies had since failed to reproduce those results, including two studies published at the same time as his editorial.

One concluded that the mostly likely explanation for the 2009 finding was that laboratory samples were contaminated with XMRV.

The other looked at 61 patients with chronic fatigue syndrome who took part in the original study, but it found no trace of XMRV.

As a result, Science asked for the authors of the 2009 research paper to voluntarily retract their findings. They declined.

Annette Whittemore, President of the Whittemore Peterson Institute, said: “We are extremely disappointed that the editor of Science has published an ‘editorial expression of concern'”.

She said that other studies had not used the same experiments as the original study and that: “The authors of the Lombardi study believe that it is premature to conclude that the negative studies are accurate or change the conclusions of the original studies.

“Much of the work on this new retrovirus has yet to be performed, and we look forward to new studies which will support the results and findings described by these accomplished scientists.”

Dr Jonathan Stoye, virologist at the Medical Research Council National Institute of Medical Research, said: “It comes as no great surprise, in fact it was inevitable since a series of studies failed to reproduce the original results.”

“It should be made as definitive as possible that XMRV is not linked to chronic fatigue syndrome. It is a myth.”

He said the implication was that the samples were contaminated, however this had not been definitively proven.

He added: “Science could have gone one step further and withdrawn it off its own bat. In football this is somewhere between a red and a yellow card.”

Able Radio: Birmingham City Council Ruling

May 31, 2011

Today on Able Radio, I talked about the recent ruling against Birmingham City Council and what this means for disabled people.

Bionic Eye Gets Go Ahead In Britain

May 31, 2011

TENS of thousands of blind people have been given hope of seeing again with the help of “bionic” eyes which have just been given approval for use in Britain.

 The artificial retina implant, the first of its kind, got the green light from European regulators following successful trials.

Tests showed it can be safely used to restore at least partial sight to people with retinitis pigmentosa (RP), an incurable disease which gradually destroys eyesight.

The condition results in damage to the retina, the layer of tissue at the back of the inner eye which converts light to signals sent to the brain.

It is hoped the device will be developed to treat other conditions. Manufacturers claim it could cut the amount it costs to support the visually impaired by millions of pounds.

RP affects one in 4,000 people in the UK and leads to impaired vision, tunnel vision, and sometimes complete blindness.

Lyndon Da Cruz, consultant opthalmic surgeon at London’s Moorfields Eye Hospital, said: “Patients with RP who can afford it can now have an artificial retina. It is proof of principle, always the great unknown with new technology.”

The Argus II implant works via a camera fitted to a pair of glasses which captures the image and sends information to a video processor worn by the patient on a belt. The processor converts the image into an electronic signal which is then sent back to a transmitter attached to the glasses.

This sends a wireless signal to a wafer-thin receiver on the outside of the eye and an electrode panel implanted on the retina. The electrodes stimulate the nerves in the retina which send electrical pulses along the optic nerve to the brain.

Patterns of light and dark spots are then “seen” by the patient. A battery pack is worn by the patient to power the device.

Mr Da Cruz, who treated seven of the 10 British patients in the 30-person trial, said: “This demonstrates that plugging in technology to the neural structure of the eye is possible, and that this can integrate stably over a long period. Now we have something that works we can begin to think about how to make it better.”

 The trial results were presented at the Euretina ophthalmology conference in London at the weekend. Doctors were said to be thrilled with the findings – with one patient able to see fireworks and another making out letters.

It marks a breakthrough in bionic eye technology because it demonstrates that electronic implants can reliably restore “worthwhile sight”. One patient, who had been registered blind for 19 years, said she was initially disappointed but was eventually able to recognise household objects.

Kim, 39, of Newbury, Berks, said: “They told me to look towards the door. There was all this light from the hallway. Oh my goodness, it was so bright. They showed me this electric blue, and it was wonderful. It’s my favourite colour.”

The device has been judged to comply with international standards, meaning it meets criteria to be sold on the European market. However, it will cost the patient £53,000 plus a further £11,000 for training.

It is not yet available on the NHS although American manufacturer Second Sight has applied to the National Specialist Commissioning Advisory Group, which advises the Government on new medical procedures, for approval.

It has also been referred to the National Institute for Clinical Excellence (NICE), the health spending advisory body which issues guidance to the NHS. But Gregoire Cosendai, vice president of Second Sight, said initial feedback from NICE had “not been favourable”.

He said: “Reimbursement has been agreed in other countries and we are making the case. As the cost of supporting a blind person over a lifespan is from £3million to £4million, we believe this can save money. The approval is very significant because no treatment like this has been approved in patients before.

“There is no therapy for retinitis pigmentosa, which makes it a difficult diagnosis for doctors and patients. They know that they are going to lose their sight.”

Around 25,000 people in Britain are affected by conditions resulting from RP. Although symptoms often develop in childhood, severe problems do not usually show until adulthood.

The cells controlling night vision, rods, are the most likely to be affected. But cone cells, which are responsible for colour vision, can be damaged as well.

Mr Cosendai said Second Sight expects to start selling the implant in the summer.

 

Assisted Suicide Campaigner Dr Ann McPherson Dies

May 31, 2011

Sad news.

A prominent assisted suicide campaigner has died from pancreatic cancer.

Dr Ann McPherson, who died on Saturday aged 65, was an outspoken campaigner of the terminally ill’s right to die at a time of their choosing.

The GP and mother-of-three was a patron of Dignity in Dying and founder of Healthcare Professionals for Assisted Dying (HPAD).

Actor Hugh Grant, who knew her through their ties to charity healthtalkonline, described the campaigner as “amazing”.

She was medical director of the charity and he is a patron.

Speaking on behalf of her family, her daughter, Beth Hale, said her mother was “a truly wonderful wife, mum and granny”.

She said: “Her ability, apparently so effortless, to combine her professional life with her family life should provide inspiration to working women everywhere.

“Her death leaves a huge gap in many lives and her husband, three children and five grandchildren, with one on the way, can only hope in some way to do justice to her formidable spirit.”

And Sarah Wootton, chief executive of Dignity in Dying, said everyone at the charity had been “saddened by Ann’s death”.

“In the two years since she became involved, Ann has done a huge amount for the campaign and she leaves an incredible legacy,” she said.

Meanwhile, actor Grant, who accepted the British Medical Journal’s Communicator of the Year Award on Dr McPherson’s behalf earlier this month, said: “Ann was an amazing woman – doctor, author, campaigner and founder of the the inspired healthtalkonline.

“I am so delighted she nagged me into helping with it and I’m so sorry for her family, for medicine and for the country that she’s gone.”

The grandmother-of-five was a former chair of the Royal College of General Practitioner’s Adolescent Task Group and a member of the last government’s Teenage Pregnancy Independent Advisory Group.

She was born in London but lived and worked in Oxford for the last 35 years.

Harrison Stedman

May 31, 2011

Harrison Stedman was five months old when a health visitor became concerned about him turning purple.

Later that day, after he was transferred to the Royal Brompton Hospital in London, Harrison’s parents were told he had a complex heart condition, caused by a genetic defect known as 22q11 deletion syndrome.

“It’s the most common genetic deformity that no one has heard of,” says his father Bernard.

But they already knew something wasn’t right.

“Harrison spent a lot of time with colds, didn’t put on weight and tended to sit silently because he didn’t have the energy to cry. He would always be fighting for breath.”

For the 200 children born with the illness each year, there are a significant number of medical problems to deal with. These can include heart defects, cleft palate, breathing and speech problems, learning difficulties and a compromised immune system.

Oxygen-dependent

There are 180 different symptoms altogether.

Since Harrison’s diagnosis he has had four major heart operations and many others to repair his arteries.

He was oxygen-dependent for three years as a young child and has continuing cardiac problems.

“It was a merry-go-round of medical appointments,” Bernard says.

“We kept being referred to different hospitals and units, and making extra trips to lots of doctors and specialists who wanted to help us.

“In the end we felt we had become more knowledgeable about 22q than the doctors.”

But at that stage they had no idea about the other factors that would come into play as a result of the genetic condition.

Harrison also has speech and language difficulties, although these didn’t stop him from attending a normal state primary school when he was five.

However, when his parents realised Harrison wasn’t progressing and he was finding school physically too exhausting, they took the decision to educate him at home.

Harrison Stedman at 20 months old, receiving oxygen from a cylinder under the buggy. For three years Harrison had to be given oxygen

They set up a classroom in their house and followed the national curriculum to the letter, with his mother acting as tutor and carer for six years.

Harrison is now 13 years old: his needs have changed again and he attends a special school near his home.

“He says school is much easier than being taught at home by Mum. He is doing well and is enjoying mixing socially with other children with similar problems. It’s made him more confident,” Bernard says.

Behaviour disorders

The genetic condition Harrison suffers from is caused by a missing piece of chromosome 22 at “position 11” in the chain.

Dr Alex Habel, consultant paediatrician at Great Ormond Street Hospital in London, calls it “a very vulnerable, very special” bit of chromosome.

The unstable part of chromosome 22 is important in the formation of organs and also in relation to learning and behaviour disorders.

“Its early identification is vital. If we can recognise problems early then the children with 22q won’t be swamped or submerged in the system. There are too many examples of kids left not coping,” says Dr Habel.

A cleft palate, slow learning and heart problems are the main clues to whether a child has 22q deletion syndrome, which has been known as DiGeorge syndrome and velocardiofacial syndromes over the years.

Although Harrison will need his biochemistry monitored throughout his life, Dr Habel says a new technique could help future research into the genetic condition.

“If chromosomes are the chapters of the book, we can now look at the single lines on the page which are the DNA sequences, thanks to a technique called array CGH,” he says.

In the meantime, Harrison is concentrating on making new friends at school and learning to make spaghetti bolognese, his favourite dish.

Eddie Kidd Still Walking The Marathon

May 30, 2011

Former stunt rider Eddie Kidd, who was brain damaged in an accident, is entering his final week of walking the London Marathon route.

Mr Kidd, of Seaford, East Sussex, was injured in 1996 when his bike crashed after jumping across a drag strip.

He has been walking up to a mile a day in aid of the charity Children with Leukaemia, despite the severe disabilities he suffered in the crash.

He started with the competitors on 17 April and is due to finish on 6 June.

He is using a specially designed walking frame after spending months training for the marathon on Brighton seafront.

Despite his slow progress, he has said he is determined to reach the end of the route.

His wife, Sami Kidd, said he was doing well despite being caught in a “mini monsoon and getting stuck in absolutely torrential rain” last Thursday.

‘Champagne celebration’

She said he was expected to cross the finishing line on the Mall at 1900 BST on Monday 6 June.

“We want anyone to come down and be there to cheer him on so he gets his big grand prix finish.

“We want to spray him with champagne and say well done Eddie,” she said.

Mrs Kidd added: “He’s just really keen now to get this finished.

“His glass is half full, so it’s spurring him on, and giving him more adrenalin to get to the end.”

The total raised so far for Children with Leukaemia stands at £60,000, exceeding Mr Kidd’s original target by £10,000.

Unusual Excuses For Benefit Fraud Revealed By Government

May 29, 2011

Ministers have tried to highlight the impact of benefit fraud by publishing some of the more unusual excuses used by people found guilty of cheating.

Reasons include carrying ladders as therapy rather than for cleaning windows, and claiming an identical twin had been doing work rather than them.

About £1.6bn is lost through benefit and tax credit fraud each year.

Some disability groups have warned the government against exaggerating the scale of the problem to justify cuts.

Farm work

One excuse revealed by the Department for Work and Pensions (DWP) was: “I wasn’t aware my wife was working because her hours of work coincided with the times I spent in the garden shed.”

Another false claimant said: “We don’t live together, he just comes each morning to fill up his flask.”

In a case highlighted by the DWP, a man from Yorkshire claimed nearly £17,500 to look after his sick father – but had to admit to lying when his father revealed he had not seen his son for years.

In another instance, a man claimed more than £55,000 in disability benefits while he was working on a dairy farm.

Welfare Reform Minister Lord Freud said benefit fraud was serious, yet investigators were “routinely dealing with bare-faced cheek and ridiculous excuses for stealing money from the taxpayer”.

‘Negative impact’

“It’s bad for the system because it drives it into disrepute. We want to spend the money on people who genuinely need it,” he said.

“People stealing it for themselves means there is less money to go to where it is really needed to reduce poverty in this country.”

Lord Freud said the introduction of Universal Credit would simplify and automate the benefits system, and make it much easier to catch people who made false claims.

But Richard Hawkes, chief executive of disability charity Scope, said: “The government really has to stop over-simplifying the debate on welfare and using unusual fraud cases to support changes which could have a serious and negative impact on the lives of hundreds of thousands of disabled people.

“We’d like to see the government put as much effort in to finding disabled people long-term sustainable employment.”

Emily Collingridge’s Open Letter For ME Awareness

May 29, 2011

Cross posted by request from here.

This article is an open letter by Emily Collingridge, who is best known as the author of Severe ME/CFS: A Guide to Living, a guide for patients and those involved in caring for them to the various aspects of life with severe ME. Emily has had ME for 24 years, since she was just six years old, and in the last few years has been bedridden and suffered numerous major health crises; she is probably one of the worst-affected people right now. She has earlier told her story in more detail on the Stonebird website here.

Some background information is in order: Emily’s current relapse (which began in late 2009 or early 2010, around the time her book was published) was precipitated by an admission to hospital, and hospitals are notoriously un-restful places, even at night and even for people who are not highly sensitive to light and sound and other forms of stimulation as people with severe ME often are. There is a dire need for special units in hospitals to accommodate such people, or at least for them to have side rooms where they can rest without disturbance from other patients and those tending to or visiting them. There are many ME sufferers who have had their conditions worsened considerably by having to go into these hideously unsuitable hospital environments.

Emily’s appeal

(Permission to re-post)

My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned 30. I still have ME.

ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease.

My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now – it’s like that every single day. After all these years I still struggle to understand how it’s possible to feel so ill so relentlessly.

My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor’s visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I’ll go mad with the suffering. Of course it can also be as bad as this for no particular reason – and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music – the list is long. ME has made my body an agonising prison.

My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I’m on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable – this despite pain levels so high that I hallucinate.

I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration.

Many days I feel utter despair.

But, unlike some sufferers, over the long years in which I’ve had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going.

My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me – severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for – but I don’t. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change.

And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others:

Please put an end to the abandonment of people with severe ME and give us all real reason to hope.”

By Emily Collingridge 2010-2011

You can support Emily and everyone with severe ME by joining the “Severe ME/CFS: A Guide to Living” Facebook group http://www.facebook.com/group.php?gid=114380158590669. Both sufferers and non sufferers welcome! See also www.severeME.info.

Jody McIntyre Case: Police Were Justified

May 27, 2011

I can’t believe this. Don’t they realise they could have killed him?

Police were justified in removing a man from his wheelchair during a violent demonstration against tuition fees in central London, Scotland Yard has said.

Jody McIntyre said he was tipped out of his chair and dragged across a road on 9 December, and was hit with a baton.

A police probe found officers were right to remove him from the wheelchair based on the “perceived risk” to him, while the baton hit was “inadvertent”.

The 20-year-old said he would appeal against the “shockingly poor” findings.

“Any person with any ounce of logic or morality in their brain would be able to quite easily that the best way to move a disabled person is not by pushing them out of their wheelchair,” Mr McIntyre said.

‘Doesn’t make sense’

The Directorate of Professional Standards at the Metropolitan Police (Met) said violent disorder had been taking place and officers were “under sustained attack and were required to use force to protect themselves”.

“Whilst there is evidence that Jody McIntyre was inadvertently struck with a police baton, the investigation found that the actions of officers were justifiable and lawful given the volatile and dangerous situation,” the force added in a statement.

“His removal from his wheelchair was also justifiable given the officers’ perceived risk to Jody McIntyre.”

The Met’s probe was supervised by the Independent Police Complaints Commission, but Mr McIntyre asked: “Why are the police investigating themselves?

“Does that make sense to you, that the police attacked a man in a wheelchair and then they investigate themselves?”

He went on: “Throughout the report the police officers involved have stated that they were acting in my best interests, and this appears to have been accepted by those carrying out the investigation.”

The force appeared to believe that “the fact someone has a disability renders them incapable of determining their own best interest or to act with autonomy”, he said.

Following the investigation, internal guidelines will be drawn up on the most appropriate way to move a wheelchair user in such circumstances.

GB Women Win Wheelchair Basketball Gold At Paralympic World Cup

May 27, 2011

Great Britain’s women’s wheelchair basketball team beat Germany 63-52 to win gold at the Paralympic World Cup.

The team, who had also defeated the Germans in the round-robin stages, were outstanding as they claimed a first international title in Manchester.

GB men’s team were also in the medals, securing bronze with a 63-43 victory over Brazil.

It was a close contest for three quarters, but GB ran away with it in the fourth as the Brazilians tired.

The star for the GB women was Helen Freeman, who is currently based in the University of Illinois on a sports scholarship, who continued her superb form in the tournament by top-scoring with 22 points.

There was also an impressive performance by teenager Amy Conroy, who hit 16 in a strong team display.

After an edgy opening quarter, GB pulled ahead in the second quarter with Freeman and Conroy leading the way despite Conroy picking up some early fouls.

The GB team out-rebounded their German opponents and the depth on their bench, which has been a common theme throughout this tournament, saw them storm to a commanding 36-21 lead by half-time.

Louise Sugden, Laurie Williams and Helen Turner also contributed to the scoring and rebounding and never allowed the Germans back into the game.

The home side played some strong defence and their shooting, which has improved over recent tournaments, kept them well ahead of their opponents as they celebrated a famous win.

“We hit our shots and believed we could win,” said Freeman afterwards. “We’ve been working on our shooting a lot and it is now finally paying off.

“We have a lot of young players in this squad and it is perfect timing as they are all coming through now.

“I’ve no doubt that Germany will be back, as they are always strong, but we now feel like we can beat anyone.”

The win is a boost for head coach Garry Peel with the European Championships to come later this year in Israel, along with the World Under-25 Championship, which will feature six members of the squad that played in Manchester.

“After last night’s performance where we lost to Japan, this feels great. I said to the girls ‘Just be in control of the game’,” he said.

“We started attacking the basket and seemed to be happy with that, but I told them to keep going.

“There is a lot more confidence and belief within the squad now. Our goal is top four in 2012 but that’s still so far away, for now we just have to take it one step at a time.”

Canada were crowned men’s champions after they beat France 56-46 in the final.

Terry Bywater, who top scored for GB men with 17 points against Brazil, said: “I’m happy with the result, it was a typical ‘English Bulldog’ performance.

“We knew we had to come out of this game with a medal and we didn’t want to let the fans down and we showed what the British team is all about.”

Guardian Interview With Maria Miller

May 27, 2011

I’ve just seen this interview with Maria Miller in the Guardian. I thought some readers might be interested in it.

Yvonne Freaney’s Family Say Verdict Gives Them ‘Closure’

May 27, 2011

The daughter of a woman cleared of murdering her autistic son but who admitted his manslaughter says she will remain supportive of her.

Yvonne Freaney, 49, from Penarth, Vale of Glamorgan, will be sentenced on 10 June for the killing of Glen, 11.

Carla Freaney, her eldest child, said she loved her mother and the family now had some closure to the tragedy.

Freaney’s estranged husband Mark described Glen as “a wonderful friendly boy” and “very much loved by us all”.

“The outcome of the trial, whatever the verdict reached, will not bring Glen back to us,” he said after the verdict at Cardiff Crown Court.

“The tragedy of his death still causes us great pain.”

Glen Freaney had been a pupil at Ashgrove, a specialist school for children with autistic spectrum disorder.

Pupils and staff were said to be “very saddened” by his death.

In a statement, the school described Glen’s death as “tragic”, adding that Glen was “well liked and the school was proud of his achievements”.

Head teacher Chris Britten said: “Glen’s death was a traumatic event for everyone at the school – staff, pupils and parents alike.

“He was a happy, lively and active boy who was well loved by everyone here. He loved art and painting and had won a prize for his work.

“Indeed, one of his paintings has been hung in school in memory of Glen.

“This is a desperately tragic situation and our thoughts are with Glen’s family as they once again come to terms with what has happened.”

The Vale of Glamorgan Local Safeguarding Children Board is now required to undertake a serious case review into Glen’s death.

Board chair Phil Evans said: “The Board has already started a review of this case, in accordance with the guidance issued by the Welsh Government.

“Serious case reviews play a key role in ensuring that public agencies are accountable for their work in safeguarding children.

“An independent person with appropriate qualifications, knowledge and experience, has been appointed to provide a report. A summary will be published as soon as the process is concluded.”

Yvonne Freaney Case Shows Support For Parents Is Vital, Say Experts

May 27, 2011

Life for autistic children can be isolating and full of confusion, and frustrating for the loving parents who care for them.

As Yvonne Freaney stood trial for the murder of her 11-year-old autistic son Glen, other parents will have wondered how she could have killed her own child.

She was cleared of murder after admitting manslaughter on the grounds of diminished responsibility.

But as she awaits sentence on 10 June at Cardiff Crown Court, hers is not an isolated case.

Earlier this year, Satpal Kaur-Singh, 44, was jailed for seven years after killing her autistic son by making him drink bleach at their London home.

Ajit Singh-Mahal, 12, “was dependent on his mother for all his needs”, could not speak and had difficulty getting around outdoors.

Kaur-Singh, who also drank bleach on the day of the murder, rang 999 to say: “I’ve just murdered my son and I’ve tried to kill myself,” adding that she had been thinking about “doing this” for years.

Such tragedies shed some light on the struggles that parents of autistic children face every day and experts say they underline the importance of giving the right support.

Autism affects about 133,500 children in the UK, including 6,707 in Wales.

It is a lifelong developmental disability that affects how a person communicates with others and how they make sense of the world around them.

Autism is a spectrum condition, meaning that while some people with autism are able to live relatively independent lives but others may have accompanying learning disabilities and need a lifetime of specialist support.

The National Autistic Society Cymru’s national co-ordinator Shirley Parsley said there was more to be done in helping parents.

“The critical thing is that people get the right support at the right time,” she said.

“Families face a wide range of problems because autism is a spectrum disorder. Everybody’s autism is unique to them so the impact is different for different families.

‘Awareness is critical’

“In the home there might be issues with sleep or diet or behaviour. Problems can be verbal or non-verbal, an autistic person can have a learning disability or be highly intelligent.”

NAS Cymru runs a helpline for parents and has a growing network of branches run by local volunteers. There is a range of activities available, including coffee mornings, peer support, family activities, befriending schemes and play sessions.

“Families can talk to people who have been through similar things and can tell them things like ‘we’ve found this works or that works’,” said Ms Parsley.

“And the children get an opportunity to interact with their peer group.”

She added that children with autism “find social interaction difficult, finding it difficult to understand people’s emotions and feelings… reading facial expressions and body movements”.

“That makes it difficult to form friendships. People can be quite isolated and that makes them anxious which can come out through behaviours,” she said.

Although support is available for parents, “everything can always be improved” and “awareness is critical”, said Ms Parsley.

“Parents tell us they sometimes struggle to find the right support at the right time,” she said.

“They always want people to understand what autism is and how it impacts on families. People are talking about autism more, but there is more to be done.

“It’s about recognising and listening to their experiences. The child or young person may have been fine in school but their behaviour manifests at home. They are like a bottle of pop by the end of the day. So the parents are seeing somebody who is not sleeping or has eating issues and all the worries that come with that. What’s being seen by the outside world might be very different.

“The earlier you can get the support the better,” she said.

The National Autistic Society Cymru’s parent-to-parent helpline is 0808 800 4106. Lines are open Monday to Friday from 10am to 4pm.

Yvonne Freaney Not Guilty Of Murder Of Son Glen, 11

May 27, 2011

A woman has been cleared of the murder of her severely autistic 11-year-old son.

Yvonne Freaney, 49, of Penarth, Vale of Glamorgan, killed her son Glen at the Sky Plaza hotel in Rhoose, near Cardiff Airport, in May 2010.

She denied murder but admitted his manslaughter on the grounds of diminished responsibility.

Mr Justice Wyn Williams said Freaney would be sentenced on 10 June at Cardiff Crown Court.

After a day of deliberation, a jury of seven men and five women decided Mrs Freaney was suffering under extreme mental stress at the time she strangled her son Glen with a coat belt.

She told police she killed Glen so “no one could point fingers at him” and wanted to end her own life too.

Prosecutors argued that she was a “sad, defeated woman” but was acting sanely when she strangled Glen in an airport hotel room.

Mother-of-four Mrs Freaney denied murder but admitted manslaughter.

John Charles Rees, defending, said: “It was unlawful but she did not kill Glen out of anger.”

The court heard she was discovered in the Sky Plaza hotel room near Cardiff Airport with multiple knife wounds – but still alive.

As she was being 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.

“I killed him. I was frightened about who would look after him.”

The court heard Mrs Freaney was facing a lifetime of “one-to-one” caring for Glen. The jury heard how Glen could walk, run and ride a bike and communicated through a computer by tapping on symbols on the screen.

Prosecutor Greg Taylor QC said: “Glen was a young boy who suffered from severe autism – he was diagnosed when he was aged four.

“He was generally fit and well and had a normal life expectancy but he was totally dependent on adult care.

“He needed help, dressing, washing , brushing his teeth and feeding.

“He was not toilet trained even by the age of 11 and still wore nappies.”

‘Loving and devoted’

But Mr Taylor told the court after a “general build up of pressure”, Freaney took a room at the Sky Plaza hotel in Rhoose, Cardiff.

Mr Taylor said: “Yvonne Freaney murdered her son Glen in the room using her coat belt.

“When she was sure Glen was dead she lay down on the bed beside him and tried to commit suicide.

“She did this by cutting her wrists, her arms, legs and other parts of her body.”

The murder trial heard that Freaney had a “loving and devoted” relationship with her son Glen.

Mr Taylor said: “He was always pleased to see his mother who was a responsible parent who devoted her life to him.

“No-one doubted her devotion to care for him long-term.”

Freaney and her husband Mark were both members of the Penarth RAFA club but their marriage was “filled with problems”.

The jury was told how former RAF serviceman Mark attacked his wife on numerous occasions.

Police were called several times to the family home after alleged domestic incidents of violence. Mrs Freaney was seen by doctors several times for injuries but never pressed charges against her husband.

The court heard Mr Freaney had said: “I’m a wife beater and proud of it. She deserves it.”

The court heard Yvonne Freaney moved out of the family home and had been living in hotels for about a month before Glen was killed.

Make The First Five Count

May 27, 2011

From an email I’ve just received:

We all know that the first five years of life really count. They’re incredible years of learning that shape children’s futures. Yet, every year 1.45 million children, all under the age of five, enter school with learning and health issues that put them far behind their peers and have a lasting, negative effect on their ability to meet their full potential.

As the leading provider of autism and early intervention services, Easter Seals know what’s possible when kids get the support they need – and also what happens when they don’t. Because of this, Easter Seals has created a new program called Make the First Five Count which encourages parents and loved ones to be more aware of the social and developmental milestones that children should be reaching during the first five years of life. Some of these developmental milestones include:

Cognitive: Thinking skills: including learning, understanding, problem solving, reasoning, and remembering.

Social/Emotional: Interacting with others; having relationships with family, friends, and teachers, cooperating, and responding to the feelings of others.

Recognizing a problem in developmental milestones is the very first step to ensuring a child gets the services he or she needs early – at the time they can benefit the most. When kids get the right treatment and therapy early in life, they’re ready to learn alongside their peers and build lifelong skills. Known as early intervention services, these therapies work to strengthen a child’s physical, social, emotional and intellectual abilities well before kindergarten.

To show you how early intervention changes lives I invite you to view Kyle’s story in the link below. Kyle is a first grader who was diagnosed with a form of autism at age 2; thanks to early intervention services through Easter Seals Kyle’s teachers say he may be able to live independently someday. You can check out Kyle’s story by visiting the link below: www.westglen.com/online/makethefirstfivecount.html.

I would love if we could work together to spread word about Make the First Five Count by sharing a link to Kyle’s story with Same Difference readers, friends, and family. I invite you to find out more about the program by visiting www.MaketheFirstFiveCount.org. I also urge you to visit CVS Caremark’s All Kids Can Program which has assured the delivery of Easter Seals services to the lives of nearly 100,000 children with disabilities served by Easter Seals nationwide.  Together, we can work to ensure every child has a chance to achieve their dreams!

Holly Alonis

Canada Researchers Identify Human Brain’s ‘Bat Sight’

May 26, 2011

The part of the brain used by people who can “see like a bat” has been identified by researchers in Canada.

Some blind people have learned to echolocate by making clicking noises and listening to the returning echoes.

A study of two such people, published in PLoS ONE, showed a part of the brain usually associated with sight was activated when listening to echoes.

Action for Blind People said further research could improve the way the technique is taught.

Bats and dolphins bounce sound waves off their surroundings and by listening to the echoes can “see” the world around them.

Some blind humans have also trained themselves to do this, allowing them to explore cities, cycle and play sports.

Brain scan

Researchers looked at two patients who use echolocation every day. EB, aged 43, was blinded at age 13 months. LB, 27, had been blind since age 14.

They were recorded echolocating, while microphones were attached to their ears.

The recordings were then played while their brain activity was being recorded in an fMRI machine.

Increased activity in the calcarine cortex was discovered.

Dr Lore Thaler, from University of Western Ontario, said: “This suggests that visual brain areas play an important role for echolocation in blind people.”

The study looked at only two people so cannot say for certain what happens in the brains of all people who learn the technique, but the study concludes: “EB and LB use echolocation in a way that seems uncannily similar to vision.”

Susie Roberts, rehabilitation officer at Action for Blind People, said: “This research into brain activity and echolocation is very interesting and improves our understanding of how some visually impaired people may be processing information to help them navigate safely.

“Further investigation may help to improve the way the technique is taught to people in the future, potentially improving their mobility and independence.”

Snap! Your World For Mencap’s Photography And Film Competition

May 26, 2011

I have just recieved the press release below from Louise Toms at Mencap.

Learning disability charity Mencap is calling on budding photographers from across the UK to enter its annual photography and film competition, Snap! which is now open for 2011.

Now in its ninth year, Snap! is a major photography and short film competition offering a unique insight into the lives, emotions and interests of people with a learning disability, their families and carers. Snap! is the only national photography competition which features images taken by someone with a learning disability or of someone with a learning disability.

This year the competition’s theme is Snap! My World which aims to present a complete perspective of the lives of people with a learning disability – from the challenges and prejudice they face, to their achievements and the people who impact on their lives the most.

Mark Goldring, Mencap’s chief executive, said: “Mencap’s Snap! competition has produced countless inspiring images and this year’s Snap! will continue to offer people with a learning disability a creative outlet to express themselves.

“In the current environment of government public spending cuts, people with a learning disability have never been more concerned about the impact on the benefits and support services that allow them to live as independently as possible. Snap! My World will give people an opportunity to speak up and voice their concerns and opinions.”

Snap! My World has four categories including My Heroes, My Achievements, Understand Me and My Challenges. Last year Mencap received over 400 entries and wants to make this year’s competition even bigger and better. Visit www.mencap.org.uk/snap for more information. Entries will be accepted until 30 June, 2011.

Winners will be announced at a prize winners’ party and award ceremony in September.  Anyone who enters has a chance of winning a fantastic digital camera from FUJIFILM UK Ltd.

Snap! is sponsored by Fujifilm UK Ltd and the Sorrell Foundation and supported by Proud Camden.

Autistic Brains Are Chemically Different, Finds Study

May 26, 2011

The brains of people with autism are chemically different to healthy ones, according to researchers.

A study, published in the journal Nature, showed the unique characters of the frontal and temporal lobes had disappeared.

Different genes should be active in each region, but autistic brains had the same pattern of gene expression.

The National Autistic Society said the results could be important for future treatments.

Autism spectrum disorders, including Asperger’s syndrome, are common and affect more than 500,000 people in the UK.

They are thought to be caused by a combination of genetics and the environment.

Professor Daniel Geschwind, from the University of California, Los Angeles, said: “If you randomly pick 20 people with autism, the cause of each person’s disease will be unique.

“Yet when we examined how genes and proteins interact in autistic people’s brains, we saw well-defined shared patterns. This common thread could hold the key to pinpointing the disorder’s origins.”

Differences

The scientists in the UK, US and Canada compared samples from 19 autistic brains and 17 healthy ones.

They noticed that 209 genes linked to the way brain cells work and talk to each other were working at a lower level in autistic brains while 235 genes linked to immune and inflammatory responses were expressed more strongly.

The researchers said many of these genes had already been linked to the condition.

They also noted that there was no longer a difference in the genes expressed in the frontal and temporal lobes in the brain.

Professor Daniel Geschwind said: “Instead, the frontal lobe closely resembles the temporal lobe.”

It is likely due to defective brain development, they argue.

Richard Mills, director of research at the National Autistic Society said: “We are beginning to better understand the differences between the brains of people with autism and those without.

“If replicated these findings are important for the development of interventions which may reduce the more disabling effects of autism.

“They also confirm the importance of research that can shed light on underlying mechanisms. It is critical that we continue our investment in high quality research consortia.”

Dogs Help Children With Autism

May 26, 2011

I already knew a little bit about this, so it doesn’t surprise me. I’m reading the book A Friend Like Henry which is about a boy with autism and his pet dog. But stories of disabled children making progress are always good stories in my opinion.

Dogs can help reduce stress in parents of children with lifelong developmental disability autism, a study suggests.

The University of Lincoln compared 20 families with dogs with 20 without.

Daniel Mills told a Royal Society of Medicine conference early results suggested any breed could improve communication and relationships.

The veterinary behavioural medicine professor hopes to use video footage to show how dogs can improve child eating, sleeping and tantrum behaviour.

At a three-day Parents’ Autism Workshops and Support course, the families listed more than a thousand ways their dog had helped – from developing language and establishing a routine to using the pet to request action in a non-confrontational way.

The Saunders family decided to get Boogie, an 18-month King-Charles-cocker-spaniel cross, because of four-year-old son Oak’s close connection with animals.

Rowan Saunders said: “Oak has particular problems with stepping out the front door. To him, it is like he is stepping off a cliff.

“So we have started to use Boogie to help Oak with transitions, from going from one situation to another.

“It is reassurance. He thinks that if Boogie can do it, then he can do it.

“Oak’s verbal skills are better. He is eating different textured foods as he feeds Boogie different foods. We do a lot of grooming with Boogie, so Oak is learning about self-care and hygiene.

“In the last four months Oak has excelled himself – he keeps surprising us everyday.”

Professor Mills said: “While there is no shortage of opinion on how dogs can help, there has been little money given to scientifically look into this.”

The Dogs for the Disabled charity has had 1,300 inquiries during the past six months from parents asking how dogs could help them.

‘Alert dog’

Chief executive Peter Gorbing said: “Dogs are relatively low-cost and low-tech.

“Now is our moment. People were previously sceptical of what role they could play, but recently I have found a more receptive audience. Things are changing rapidly.”

Matthew Israel, Founder Of Electric Shock Treatment School For Children With Autism, Forced To Quit

May 26, 2011

I can’t believe this is being allowed to happen in America. In a less developed country, I might understand why something like this was being allowed to continue. But Americans doing this to disabled children? Why has no one managed to close this place down yet?

They say they’re trying to discourage dangerous behaviour. It sounds to me like there’s a suggestion that autistic children can help carrying out these behaviours, which they can’t. Dangerous methods like these are not going to do anything positive for these children. In fact they might be left with more problems than they started with!

The founder of a controversial school that treats severely autistic and emotionally disturbed children by shocking them into submission with the use of electrodes has been forced to quit the institution and serve five years’ probation.

Matthew Israel, a Harvard-trained psychologist, has created a treatment that is unique to the US and possibly the world. The Judge Rotenberg Center, just outside Boston, disciplines its students using a punishment machine that Israel invented called the GED, which gives a two-second electric shock to the skin of up to 90 milliamps.

At the centre, which was profiled by the Guardian earlier this year, students wear backpacks around the clock with the GED electric generators inside them, and are zapped using remote control devices controlled by their carers. In some cases, they are shocked as often as 30 times a day as a means of dissuading them from behaviour deemed dangerous to themselves or others.

The criminal charges brought against Israel relate to an incident in August 2007 at one of the school’s residential homes where students sleep at night. A call came in from someone posing as an authorised supervisor, who informed the carers on duty that two teenagers had misbehaved and should be given shock treatment.

At 2am, the boys were strapped on boards and given multiple shocks. One of the boys, aged 18, was shocked 77 times over a three-hour period and the other boy, aged 16, was shocked 29 times. It was later discovered that the initial call had been a hoax.

The Massachusetts attorney general, Martha Coakley, indicted Israel over allegations that he ordered his staff to destroy video evidence that revealed exactly what happened that night. Prosecutors had previously ordered that the video recordings from the home were preserved.

“Dr Israel then attempted to destroy evidence of the events and mislead investigators, and that conduct led to his indictments today. Today’s action removes Dr Israel from the school and should ensure better protection for students in the future,” Coakley said.

The conviction is a substantial blow to Israel, who has weathered a storm of protest about his controversial methods for 40 years. He announced his retirement from the school on 2 May, without referring to the pending criminal case. He said he was moving to California, where his wife Judy lives.

“I am now almost 78 years old, and it is time for me to move over and let others take the reins,” he said in a resignation letter.

But his departure will not materially change the way the school operates, crucially its technique of disciplining children by meting out electric shocks as a form of supposedly therapeutic punishment. Of the school’s 225 students, 97 are currently on the electric shock regime.

The terms of the plea deal struck between Israel and the prosecutors require the school to introduce additional monitoring to prevent a similar lapse of security happening again. But the shocks themselves can continue.

“The case was only about Israel’s conduct, it did not address the way the school is run,” a spokesman for the attorney general’s office said.

Laurie Ahern of Disability Rights International, which has been a persistent critic of the school, said that without an end to the shocks, Israel’s departure would be irrelevant. “I don’t see any radical change at the moment.”

Hillary Cook, who spent three years at the school until 2009, and who was regularly shocked, said that whatever happened to Israel, she wanted to see the regime of shocks abolished. “I’m just worried about the kids who live there, because I know what it’s like. They say the shocks are like a bee sting, and believe me they are not. It should be illegal to physically harm children and disabled people in this country.”

The school has been a subject of huge controversy over past decades, with regular attempts to shut it down. Last year its use of electric shocks was attacked as a form of torture by the UN rapporteur on torture.

In February, the justice department opened an investigation into the school after it received a complaint alleging the centre had violated disability laws.

Despite the negative publicity directed at him, Israel managed to keep operating for so long partly because he had the vociferous support of parents of severely autistic children at the school.

The centre rarely uses drugs on its students, in contrast to many other homes for autistic people where heavy doses of psychotropic drugs are prescribed. At the time of Israel’s resignation, Louisa Goldberg, whose son has been on the shock regime for the past 11 years, said that “Dr Israel’s pioneering efforts have given our child back his life and we are extremely grateful for all that he has done for our family.”

Okay, so the system works for Louisa Goldberg’s son. Great for him. Personally, I still agree with the people above who think it’s torture. Oh, and child abuse.

Obama And Cameron Discuss Gary McKinnon Case

May 25, 2011

Barack Obama said he would “respect” the legal process in the case of British computer hacker Gary McKinnon who is wanted in the US, signalling his government was prepared to soften its stance.

There were calls for the US president to use his state visit to Britain to scrap American attempts to extradite the Asperger’s sufferer.

The 45-year-old faces 60 years behind bars for hacking into Pentagon and Nasa computers between February 2001 and March 2002 while searching for evidence of “little green men”.

There has been a long-running campaign for Mr McKinnon to be allowed to remain in the UK following warnings from medical experts that he could kill himself if sent to the US to face trial.

The case is currently before Home Secretary Theresa May, who has to make a final decision as to whether Mr McKinnon should be extradited.

Speaking during a press conference at Lancaster House, Mr Obama stopped short of abandoning US attempts to extradite Mr McKinnon.

But he seemed to offer the London-based computer hacker and his family a way out by saying he would respect the British legal process.

He said: “We have proceeded through all the processes required under our extradition agreements. It’s now in the hands of the British legal system.

“We have confidence in the British legal system coming to a just conclusion, and so we will await resolution and we will be respectful of that process.”

The Prime Minister, referring to Mr McKinnon by his first name, said he understood the “widespread concern” about the way he would be treated if handed over to the US authorities.

He said: “The case is in front of the Home Secretary who has to consider reports about Gary’s health and his well-being and it is right that she does that in a proper and effectively quasi-judicial way.

“I totally understand the anguish of his mother and family about this issue. We must follow the proper processes and make sure this case is dealt with in the proper way and I am sure that is the case.”

Earlier this week, there were calls for the coalition leadership to raise the issue with Mr Obama during his state visit.

McKinnon’s case was raised with Deputy Prime Minister Nick Clegg on Tuesday by the hacker’s constituency MP David Burrowes.

Speaking at Commons questions, Mr Burrowes (Enfield Southgate) said: “When the Prime Minister visited America, President Obama said (that) because of the unsurpassed special relationship between our countries an appropriate solution would be found.

“Can he assure me the case of Gary McKinnon is raised during the visit of the president and also that the ‘appropriate solution’ is to stop the extradition to the US?”

Mr Clegg said the Home Secretary would be reviewing new information “against the impact on his human rights”.

Shami Chakrabarti, director of Liberty, said: “If, as the president says, he will be ‘respectful’ of our legal process, then he should be happy for Gary to be dealt with here in the UK.

“If our Government seeks to honour the words of both coalition partners in opposition, it will decide that Gary’s condition warrants halting this farcical extradition immediately, so that justice and compassion can be dispensed at home.”

Karen Todner, senior partner at Kaim Todner solicitors, said she was “absolutely delighted” if the US was relaxing its position.

She said Mr McKinnon’s mother Janis Sharp described the President’s comments as “very positive”.

Ms Todner said: “Bearing in mind we do have this special relationship, the fact Mr Obama has come out and said he would respect the English judicial system is wonderful.

“It’s affected every minute of every day of Gary’s life for the last nine years. Most people are now aware of what Asperger’s is. Even five years ago they were not so aware, but I think they (the US authorities) have at some point been consulted about that and they have seen the files which show how this whole process has detrimentally affected Gary’s life.”

It is not yet known when Mrs May will decide whether Mr McKinnon must be extradited.

A Home Office spokeswoman said: “Extradition can only be refused at this late stage in the process if the Home Secretary decides that extradition would breach Gary McKinnon’s human rights.

“The Home Secretary aims to reach a decision as soon as is consistent with dealing fairly and properly with all matters raised by Mr McKinnon’s legal team.”

The Dolphin Dome

May 25, 2011

A marine engineer has invented a substitute for swimming with dolphins.

The device, called the Dolphin Dome, uses video screens and the sounds of the sea to recreate the sensation of being in the ocean with the animals.

Interacting with the aquatic mammals is claimed to have a beneficial effect for people with certain conditions, such as autism and cerebral palsy.

Paul Obernay hopes his invention will offer a cheaper and more accessible therapy for people with special needs.

He took two years to build the £100,000 prototype in the dining room of his house at Preston, near Hull.

Mr Obernay said he was inspired by his interest in marine wildlife and a belief dolphins should not be kept in captivity.

The unit is an enclosed dome containing video screens with images of dolphins. Coloured lights and dolphin calls are played as the patient lies on the floor.

The device is currently on trial at the Spire hospital in Analby near Hull.

One child trying it out was Joel Collier, aged nine, who has cerebral palsy. His father Nigel said that his son had benefited from the session.

He said: “We had a fair amount of wrestling, but when he noticed the screen up on the roof you could see he was really concentrating on it for a few minutes. So he really enjoyed it.”

After the 10-week trial is finished, the unit will be sent to a special school in Perth, Scotland, where the local university will further research in to its potential benefits.

RADAR’s MP Dialogue Scheme

May 25, 2011

Thanks to the BBC Ouch Blog for posting this today:

Would you like to raise national or local concerns with your MP but lack the confidence or support to do so? Well, read on.

Radar has opened up their MP Dialogue scheme at, what feels like, a particularly poignant moment for the disability community. It gives practical support to disabled people and also encourages Members of Parliament to listen to their disabled constituents.

MPs championing this two-way dialogue include Ann McGuire, Rosie Winterton and Ian Swales.

Radar CEO Liz Sayce, OBE, says: “It’s vital MPs hear from their disabled constituents about the issues that affect them.”

The scheme gives disabled people advice about how to prepare and conduct a meeting with their MP, along with key facts about topical issues they may want to raise. For MPs, Dialogue information provides communication and access advice and updates on equality legislation. Small grants are also available to cover access costs.

Liz hopes the scheme may go further: “We want the Dialogue to not just get people talking, but to give disabled people the chance to think about becoming an MP or Councillor themselves – as too few are represented in public life.”

To take part, email campaigns@radar.org.uk or phone Cheryl Gowar on 020 7503 6176.

The MP Dialogue runs until the end of June 2011.

Deaf Rapper: Signmark

May 25, 2011

I’ve just opened the latest issue of Disability Now, which carries an interview with Deaf rapper Signmark. I didn’t know anything about him before, so I went looking for him online. I found his website and some of his songs on YouTube. This is an inspirational one, suitable for Same Difference, so… enjoy!

Oscar Pistorius Sits For Bronze Sculpture Casting

May 25, 2011

Paralympian Oscar Pistorius is being immortalised in bronze to feature in an exhibition of the world’s top athletes.

A plaster cast of the South African, who is known as the Blade Runner, has been taken in Manchester.

Bath-based artist Ben Dearnley is to create a sculpture of the 24-year-old athlete’s torso for a display at Salisbury Cathedral during London 2012.

He described Pistorius, competing at the Paralympic World Cup in Manchester, as “this amazing human being”.

Pistorius, a double amputee, is the 100m, 200m and 400m Beijing Paralympic champion, as well the world record holder in those events.

Pistorius will be defending his records at the World Cup, which takes place until 28 May, and will also be going for gold at London 2012.

A sculpture of his torso will help pick up on “something of the essence of what it is that makes him the best in the world”, according to Mr Dearnley.

The artist is creating a series of sculptures of top athletes that will form the Avenue of Champions exhibition, which will be opened to the public during the 2012 Games.

Mr Dearnley chose to sculpt the torso to show how different athletes have been shaped by their disciplines.

He said: “It is here the heart beats and here we also have the reference to the ancient classical fragments of the first Olympic statues – broken marble stories, carved over 2,000 years ago.”

On Monday, Pistorius visited the Olympic Stadium in east London and revealed his ambition was to become “the fastest man on the planet”.

But before he gets to the 2012 Games, Pistorius will compete at the seventh annual Paralympic World Cup in Manchester.

Billed as the largest annual international multi-sport competition in elite disability sport, athletes from around the world are competing in events including athletics, wheelchair basketball and swimming.

Petition To Stop Deportation Of Disabled Five Year Old

May 24, 2011

http://twitter.com/#!/DisabilityNow/status/72623623655010304

Here’s the full story. I have to warn you, it’s heartbreaking.

Update 25/5/ 2pm: There’s also a Facebook page with more campaign info.

Fiona Pilkington Case: IPPC Report Findings- Four Officers Face Misconduct Proceedings

May 24, 2011

Four officers face misconduct proceedings after police missed chances to stop a gang terrorising a woman who later killed herself and her daughter.

Fiona Pilkington, 38, and 18-year-old Francecca Hardwick, who was disabled, died in October 2007 when Ms Pilkington set fire to their car.

The Independent Police Complaints Commission has found the family should have been identified as “vulnerable”.

They had complained 33 times to Leicestershire Police about harassment.

An inspector, a sergeant and two police constables have a case to answer for misconduct, but the force stressed that their jobs were not at risk.

IPCC Commissioner Amerdeep Somal said: “There was nothing in place to ensure the Pilkington family were considered by police as vulnerable or repeat victims, contrary to the force’s own strategy.

“Systems were in place for officers to have linked the catalogue of incidents but these were not well utilised.

“Police missed several opportunities to take robust action, inadequately investigated criminal allegations on some occasions and failed to record information on their own intelligence system.”

Over the course of 10 years, Ms Pilkington’s home in Barwell was repeatedly targeted by groups of up to 16 youngsters, with stones, eggs and flour thrown at the house.

On one occasion, Francecca – who had the mental age of a four-year-old – was told to lift up her night-dress, while her brother Anthony was locked in a shed at knifepoint.

‘Gave up’

Ms Pilkington reported the incidents, but in total received only eight visits from officers.

An inquest in 2009 heard that six months before her death she had told her family: “I give up.”

The 38-year-old killed herself and Francecca by pouring petrol over their car in a lay-by on the A47 in nearby Earl Shilton.

The inquest found that failings by the Leicestershire force – along with Hinckley and Bosworth Borough Council and Leicestershire County Council – had contributed to the deaths.

The coroner said the abuse had been classified as anti-social behaviour, rather than crime, and that information had not been properly shared.

The case has led to a review of the way police forces deal with targeted anti-social behaviour.

Last year, Ms Pilkington’s family announced they had issued legal proceedings against Leicestershire Police and the two councils.

Able Radio- Reasonable Adjustments

May 24, 2011

Today on Able Radio, I talked about the ‘reasonable adjustment’ law for employers hiring disabled people- and some high profile cases where employers have refused to make reasonable adjustments.

Wales ‘Behind’ On Independent Living For Disabled People, Says Charity

May 24, 2011

Wales trails the UK in helping disabled people to live independently in the community, says a charity.

Disability Wales will tell a Westminster inquiry that the lack of a Welsh strategy on independent living disadvantages disabled people.

The inquiry is discussing whether changes to the law are needed.

The Welsh Government says on its website it is “committed to engaging with and listening to the needs of disabled people”.

The website statement also said it was “addressing the historical imbalance which has resulted in many disabled people being socially excluded and undervalued.”

Independent living would “be the best way to mitigate cuts in services and benefits,” argued Disability Wales

Rhian Davies, its chief executive, who will address the Joint Committee on Human Rights inquiry, told BBC Radio Wales that a Welsh strategy would lead to bodies such as councils, health trusts and police developing action plans and co-ordinating spending.

“People need support with everyday tasks such as washing and dressing, getting up,” she said.

Ms Davies said it was about “being in control of that personal assistance, not just waiting for someone to turn up at times convenient to the service – it’s about meeting your own needs”.

“It’s not just about getting out of bed, it’s about being able to be part of your community, whether that’s through voluntary work, or whether that’s through education and learning”.

The charity said that national policies have been introduced in England, Scotland and Northern Ireland and have presented a petition with over 700 signatures, calling for a Welsh strategy, to the Welsh assembly’s petitions committee.

Debbie Purdy Campaigning For Cannabis-Based Drug

May 24, 2011

A multiple sclerosis sufferer who won a fight to clarify the law on assisted suicide is campaigning to get a cannabis-based drug for her condition.

Debbie Purdy, from Bradford, has spent a year trying to get Sativex, which is not funded by her local health trust.

Ms Purdy wants to take the drug to treat her spasms which have got so bad she is unable to lie in bed.

Bradford and Airedale NHS said in line with Yorkshire and Humber-wide policy, it did not routinely fund the drug.

In 2009, Ms Purdy won a her legal battle at the House of Lords to clarify whether her husband would be prosecuted if he helped her to end her life.

It was ruled that if he was judged to have acted with compassion he would not be prosecuted.

She is now facing a fresh fight to get access to Sativex.

The drug was licenced by the Medicines and Healthcare Products Regulatory Agency last year and is available from some health trusts.

However it has not been appraised by NICE and so the decision whether or not to fund treatment is down to local health trusts and funding boards.

‘Exceptional circumstances’

A panel of regional experts in MS said there was no compelling evidence of benefits to patients from the drug and decided primary care trusts in Yorkshire not prescribe it.

Ms Purdy said she had started sleeping in her wheelchair because sleeping in bed was too uncomfortable.

“By the end of last year going to bed every night was becoming really painful because I would spasm in bed so I would throw myself out of bed.”

Ms Purdy said she had inquired about getting the drug privately but could not afford the cost.

“I don’t have that kind of money and I can’t find a way to raise that kind of money on a permanent basis.

“Other people have got the same problem as I have and can’t find the drugs that are available.”

A spokesperson for NHS Bradford and Airedale said patients could go through an appeals process.

“If a doctor or consultant feels a patient has exceptional circumstances for needing a certain treatment or procedure then they can make a request to the local clinical priorities committee.

“This is a standing committee and has both lay and clinical representation, which considers individual cases with exceptional clinical circumstances.”

IPCC Report On Fiona Pilkington Death Case Due

May 24, 2011

A report into police actions over a Leicestershire mother who killed herself and her disabled daughter after years of abuse is due to be published.

Fiona Pilkington and Francecca Hardwick died in a burning car in October 2007.

An Independent Police Complaints Commission investigation began after it emerged Ms Pilkington had called police 33 times about attacks and taunts.

The case has lead to a review of the way police forces deal with targeted anti-social behaviour.

Single mother Ms Pilkington’s home in Barwell, Leicestershire, was the focus of attacks by groups of up to 16 youngsters, with stones, eggs and flour thrown at the property.

Inquest verdict

The 38-year-old killed herself and her 18-year-old daughter by pouring petrol over their car in a lay-by on the A47 in Earl Shilton.

Incidents were reported over a 10-year period but the family only received eight visits from officers, the 2009 inquest heard.

Leicestershire Police admitted many of Ms Pilkington’s calls were not linked and were classified as anti-social behaviour rather than crime.

The inquest jury returned verdicts of suicide and unlawful killing, and said the response of the police and two local councils had contributed to the deaths.

Procedures changed

The force, along with the county council and Hinckley and Bosworth Borough Council, are facing legal action from the family.

The case of their deaths has been raised in the House of Commons several times.

Earlier this month Home Office Minister James Brokenshire insisted that making changes to policing so such a case would never be repeated was a priority for the government.

In January eight police forces began a pilot project to identify and protect victims of repeated anti-social behaviour more quickly.

It is focused on creating more effective call-handling and improving information-sharing between the police and other agencies like social services.

Leicestershire Police said changes had already been made in the force in the years since Ms Pilkington and her daughter died.

The IPCC report is due to be published at 1000 BST.

BT Paralympic World Cup 2011: Wheelchair Basketball Results

May 24, 2011

Great Britain’s wheelchair basketball teams experienced differing fortunes on the opening day of the Paralympic World Cup in Manchester on Monday.

The women secured a 47-43 success over a Canada side three places above them in the world rankings.

Helen Freeman was the star, leading the scoring with 29 points as the hosts edged to victory in the final quarter.

But the men lost 68-53 to France, who also beat them in the quarter-finals of last year’s World Championships.

Terry Bywater and Simon Munn contributed 14 and 10 points respectively and although Britain trailed by only three points entering the last quarter, they could not fight back to secure victory.

“The team underperformed today,” said Munn. “We are always building, however it is very disappointing that we did not bring the result home that we should have.

“This is the second time the French team has beaten us and that should not have happened, so hopefully tomorrow will be a better day for the team.”

On Tuesday they face Brazil, who were beaten 55-48 by Canada.

Monday’s other game saw Germany beat Japan 62-46 in the women’s competition.

Guardian Q&A With Sarah Teather MP

May 23, 2011

The Guardian have published the results of a Q and A session with Sarah Teather MP, in which she talked about special needs provision in education.

Yvonne Freaney’s Family Was Let Down, Trial Told

May 23, 2011

Lawyers defending a woman who killed her severely autistic son have said that social services let the family down.

A jury heard that Yvonne Freaney from Penarth was granted respite care for son Glen six years after she first asked the authorities for help.

The prosecution said she was a “sad, defeated woman” but had no personality disorder.

Mrs Freaney admits manslaughter but denies murder. The case continues.

Summing up the case for her defence, John Charles Rees QC said Mrs Freaney wrote to Vale of Glamorgan council social services as far back as 2002/2003 requesting help with sleeping arrangements.

Despite repeating the request two to three times over the years, no respite was granted until 2009, he said.

Mr Rees questioned whether Mrs Freeney was given adequate help in finding accommodation, adding that when she disengaged from social services in February 2010 it should have put social services on “high alert”.

Prosecuting barrister Greg Taylor QC said insults from Mrs Freaney’s husband had a profound effect on her.

He said that on 15 March 2010 Mark Freaney swore and suggested she should kill herself.

Mr Taylor said it was this that pushed her over the edge, prompting her to kill her 11-year-old son Glen at the Sky Plaza hotel in Rhoose, near Cardiff Airport, in May 2010.

Despite psychiatric evaluation after the boy’s death, he said Mrs Freaney did not have a personality disorder but described her as simply “a sad, defeated woman”.

People With Asthma And Lung Conditions Warned About New Iceland Volcanic Ash Cloud

May 23, 2011

Medical experts are advising people with lung conditions, such as asthma, to be prepared for the ash cloud that is expected to reach the UK on Tuesday.

The British Lung Foundation is advising those who might be susceptible to carry their medication as a precaution.

If the cloud from the Grimsvotn volcano in Iceland hits the UK, air quality could be significantly reduced, causing breathing problems for some people.

But experts predict it will not be as disruptive as last year’s eruption.

The Eyjafjallajokull volcano’s unusual ash size distribution, combined with unusual weather patterns, made life difficult across Europe during the late spring and early summer of 2010.

‘Relatively tame’

About 20 countries closed their airspace and it affected hundreds of thousands of travellers.

By comparison, the impact of the Grimsvotn volcano looks relatively tame, according to University of Iceland geophysicist Pall Einarsson.

The ash particles from this eruption are said to be larger than last year and, as a result, fall to the ground more quickly.

But lung experts still advise precaution.

Dr Keith Prowse, of the British Lung Foundation, said: “In light of the latest news that ash from the volcanic eruption in Iceland could reach the UK by Tuesday, we would advise people living with a lung condition in affected areas to carry their medication as a precaution.”

Erica Evans, of Asthma UK, said: “We know that volcanic ash can trigger asthma symptoms like coughing, wheezing and shortness of breath. However, as the ash is very high in the atmosphere it does not pose an immediate problem. Asthma UK advises people with asthma to monitor the news to see whether the ash cloud moves closer to the UK.

“People with asthma should make sure they maintain their regular asthma medicine and keep their emergency inhaler on them at all times.”

Both charities say they can offer advice via a telephone helpline to anyone who may be concerned.

The 7th BT Paralympic World Cup Starts Today

May 23, 2011

The 7th BT Paralympic World Cup starts today. You can follow the competion through reports on the BBC Sport website.

The competition also now has a Facebook page and a Twitter account.

Rory Bremner: ADHD And Me

May 23, 2011

Comedian Rory Bremner has found success in his ability to switch between impersonating many different people.

But behind this comic persona is a man who struggles to focus, loses the thread and takes on too many tasks that can leave his personal and professional life in disarray.

Bremner had always put his chaotic lifestyle down to his personality.

However, after a young relation was diagnosed with Attention Deficit Hyperactivity Disorder, or ADHD, a few years ago, Bremner decided to investigate if he too could have the condition.

In a BBC Radio 4 documentary, ADHD and Me, he says: “When I think back to my childhood it’s with a mixture of amusement and embarrassment. I was always forgetting things.

“My mum called me scatty because I could never sit still. But there was no sense I was suffering from a medical condition as such.”

In a support group for adults with ADHD, at St Catherine’s Hospital in Merseyside, Bremner met Gary, who was diagnosed in later life when his son was told he had ADHD.

But his problems started much earlier, at just 18 months old, when he was found trying to get into cars in his street. ADHD has had an overwhelming impact on Gary’s life.

School misbehaviour

ADHD expert Professor Eric Taylor, from King’s College London, says organising and planning ahead can be difficult for someone suffering from the condition, as is the tendency to act without thinking about, or understanding, a situation.

Bremner is quick to see the similarities with his own struggles to concentrate and his lack of common sense.

“It frustrates me when my mind wanders and when I end up reading the same words again and again.”

Rhys Sinclair, from East Lothian, was diagnosed with ADHD when he was six years old – but only after his mother, Avril, had convinced their GP to consider the disorder.

He had been regularly misbehaving at school and was often a nightmare to deal with at home.

After trying different approaches, Rhys’s family settled on treating him with medication which helped him focus more.

Bremner says he now understands more about his own ADHD tendencies, what it is like to live with the disorder and how society’s attitudes to it should change.

And finally he realises why he is constantly making lists and setting his watch five minutes fast.

Rory Bremner presents ADHD and Me on BBC Radio 4 on Monday, 23 May at 2000 BST.

Swansea University’s Online Register Of People With MS In The UK

May 23, 2011

An online register which aims to map multiple sclerosis (MS) suffers across the UK could improve care, services and aid research, according to experts.

The Swansea University project will capture details of those living with MS such as when they were diagnosed, their symptoms and help they receive.

The MS Society said by knowing more about how people are affected, care and research can be targeted better.

It is estimated 100,000 people in the UK have MS.

The society said it was the most common disabling neurological condition affecting young adults.

The register has been launched to mark the start of MS Week.

It is hoped the data, which will remain anonymous, will ultimately map every person with MS in the UK to develop an accurate picture of the impact of the condition.

Hospital staff at five pilot cities, Belfast, Edinburgh, Swansea, Nottingham and London, will add clinical data provided by neurologists and routine NHS information.

This will then be rolled out across the UK.

David Ford, who is leading the project at Swansea University, said it would provide new evidence to present to government and anyone working in the field for more targeted funding and support.

He said: “The MS Register has the potential to revolutionise the way MS research is conducted in Wales and across the UK.

“It could mean better access to clinical trials or new treatments.”

Beatable

Judi Rhys, of MS Society Cymru, said at the moment there was no cure for MS, the cause was uncertain and there were few effective treatments.

But she said the register would only work if enough people with MS took part.

“Having MS can be devastating and robs some people of the best years of their lives,” she added.

“Access to treatments and services for many is a daily battle.

“We are confident, with the right investment, MS is beatable within our generation and that’s why the MS Society is launching the MS Register.

“We urge everyone with MS to sign up.”

Multiple Sclerosis Awareness Week 23-29 May

May 23, 2011

It’s MS Awareness Week  in the UK, readers. Please use this week to celebrate people with MS in any way you can. Those who have the condition will hopefully be using this week to celebrate themselves!

Yvonne Freaney Killed Son To Protect Him From Care, Court Hears

May 23, 2011

A woman killed her severely autistic son because she was frightened he would be taken into care, a court has heard.

Yvonne Freaney, 49, admits the manslaughter of Glen, 11, at a hotel near Cardiff Airport, but denies murder.

She told police no-one else would look after him.

Cardiff Crown Court heard Mrs Freaney, from Penarth, may have a personality disorder linked to a fear of losing her children. The trial continues.

On Friday, her defence began with consultant psychiatrist Dr Tegwyn Williams of the Caswell Clinic in Bridgend arguing her condition meant she was not a murderer.

Mrs Freaney was sent to the clinic for psychiatric evaluation after the death of her son at the Sky Plaza hotel in Rhoose, Vale of Glamorgan in May 2010..

Dr Williams’ evidence contradicted the opinion of a prosecution expert who insisted her condition was not serious enough to amount to a personality disorder.

John Charles Rees QC, defending, asked Dr Williams if there was any doubt in his mind that Mrs Freaney was suffering a personality disorder.

“None at all,” he told the court.

“And that it substantially diminished her responsibility?” Mr Rees asked.

“None at all,” Dr Williams said again.

Continuing to give evidence, Dr Williams said that Mrs Freaney’s self-worth and self-esteem were based on the idea that she was a good parent.

He added that a clear sign she was suffering a personality disorder was that she demonstrated an inability to function in all other areas of her life.

“I think that the threat that the children may be removed from her was overpowering,” Dr Williams told the jury.

“My understanding from discussions with her is that initially she was so helpless and powerless that she wanted to kill herself.

“Her state from that point deteriorated and I believe that she saw no other option other than to kill herself and to kill Glen.

“In her mind she was protecting him from the awfulness of his abuse by people who would have to care for him other than her.”

Dislocating shoulder

Dr Williams said that Mrs Freaney had had an unusual upbringing which “left a lot to be desired” and included a relationship with a 22-year-old man when she was 12, and which was “with the agreement” of her parents.

He added that she would have suffered from low self-esteem as a child, but taken those issues with her into adulthood and they could have been made worse by her husband, Mark Freaney, who he alleged was abusive.

Earlier in the trial, Mr Freaney admitted dislocating her shoulder in one of many assaults on her.

The court has heard that all Mrs Freaney’s four children had disabilities.

New Derbyshire Centre For Disabled Young People Opens

May 22, 2011

Work on a £1.5m holiday facility for children and young people with disabilities in Derbyshire has been completed

Meadow Lodge at Lea Green, near Matlock, has six bedrooms, a sensory room and an outdoor adventure area.

Families and organisations working with disabled children can book the facility for short breaks.

The new centre was funded by money from a government grant.

Staff at Meadow Lodge will be able to support disabled children and their families to take part in activities including canoeing, an obstacle course and a zip wire.

South Yorkshire Deaf Students Creating Sensory Garden For Chelsea Flower Show

May 22, 2011

Deaf students in South Yorkshire are creating a sensory garden for this year’s RHS Chelsea Flower Show.

The Doncaster Deaf Trust is entering the Urban Garden category for the first time and will compete against professional designers and landscapers.

Local gardener, Graham Bodle, has been working with students to create a garden which “stimulates the senses”.

He said they had chosen plants which had a striking appearance or smell so that deaf people could enjoy them.

These will include jasmine, a variety of ferns and fruit trees.

Two areas of the garden will be dedicated to benched areas, which face each other, to aid sign language.

‘Fantastic job’

A water sculpture will be the main focal point of the garden made of stone and steel, called ‘Touch’ which as it alludes to, encourages people to touch and feel the different textures of the sculpture.

Ten students from the college aged between 16 and 22 have worked since January to help grow some of the 3,000 plants which will feature in the garden.

Bobbie Roberts, chair of the trustees, said: “It’s been one of the most exciting things in my life.”

She praised Mr Bodle, who is a previous winner at the RHS Chelsea Flower Show.

She said: “Graham has done a fantastic job in creating a visually beautiful and sensory garden which will benefit our deaf and hearing impaired students for years to come.”

Once the seven-day show has come to an end the sensory garden will be rebuilt within the grounds of the Doncaster Deaf Trust on Leger Way.

The trust need to raise £3,000 before the garden can be installed.

It is recruiting volunteers to help landscape the garden.

Brands Hatch To Host London 2012 Paralympic Cycling

May 22, 2011

Brands Hatch has been chosen as the venue for the London 2012 Paralympic cycling road races.

Events will start and finish at the former Formula 1 circuit and include sections on local Kent roads.

Some 225 of the world’s top riders will compete for 32 road race titles when the track closes to motor racing between 8-15 September.

The announcement means all the venues for the London 2012 Olympics and Paralympics have now been confirmed.

“I’m extremely excited to potentially be competing at Brands Hatch,” said Paralympic champion Rachel Morris.

“Winning another gold medal but on home soil this time would just be fantastic.

“The course looks great and it will be a real test for athletes, promising a great show for spectators. I can’t wait to give it my best shot in under 500 days time.”

Brands Hatch began life as a grass track cycle venue in 1928 before establishing itself as an international motor-racing circuit, hosting the British round of the F1 world championship until 1986.

Cycling is one of Britain’s most successful Paralympic sports after they picked up 20 medals – including 17 golds – across all cycle events at the Beijing Games in 2008.

The 2012 competition will cover hand cycling, tricycles, bicycles and tandems with riders competing in time-trial, road race and team relay events.

There will be 155 male and 70 female riders in medal events including mass-start road races ranging from 30km to 120km and individual and team time trials ranging from 20km to 35km.

In total there will be 17 competitions for men, 12 women’s events and three mixed events.

“This will help us extend the Games outside London and will give spectators and athletes the chance to discover yet another stunning part of our country,” said London 2012 chairman Lord Coe.

World cycling chief Pat McQuaid added: “The combination of the motor racing circuit and local roads combine to provide a circuit that challenges the athletes and one that will undoubtedly create some spectacular races and worthy winners next summer.”

Rob Summers

May 20, 2011

A US man who was paralysed from the chest down after being hit by a car is now able to stand with electrical stimulation of his spinal cord.

Rob Summers, from Oregon, said standing on his own was “the most amazing feeling”.

He can voluntarily move his toes, hips, knees and ankles and also walk on a treadmill while being supported, according to research in the Lancet.

However, a UK expert said this should not be interpreted as a cure.

Rob was a keen baseball player and in 2006 was part of the team which won the College World Series.

But in that summer he was injured in a hit and run accident and his spinal cord was damaged.

Messages from the brain, which used to travel down the spinal cord, were blocked and he was paralysed.

Doctors surgically implanted 16 electrodes into his spine.

Rob trained daily in trying to stand, walk and move his legs, while electrical pulses were sent to the spinal cord.

Within days he was able to stand independently and eventually he could control his legs and step, with assistance, for short periods of time.

“None of us believed it,” said Professor Reggie Edgerton, from the University of California. “I was afraid to believe it.”

Rob has also regained other functions such as bladder, bowel and blood pressure control.

He said it had been a “long journey of countless hours of training” which had “completely changed my life”.

He added: “For someone who for four years was unable to even move a toe, to have the freedom and ability to stand on my own is the most amazing feeling.”

Warning

This study has proved that electrical stimulation works in one person. Four more patients are being lined up to further test the treatment.

Professor Geoffrey Raisman, from the Institute of Neurology at UCL, said: “This one case is interesting, and from one of the leading groups in the world. To what extent this procedure could in the future provide a further and sustained improvement cannot be judged on the basis of one patient.

“From the point of view of people currently suffering from spinal cord injury, future trials of this procedure could add one more approach to getting some benefit. It is not and does not claim to be a cure.”

Dr Melissa Andrews, from the Cambridge Centre for Brain Repair, said that while the study was a “little bit mind blowing” people should not say this is a cure.

She added: “I think people need to read this and say the possibility is out there, but it may not come tomorrow. It’s the closest we’ve ever seen and it’s the best hope right now.”

Professor Susan Harkema, who was part of the study at the University of Louisville, said: “It is really critical to be clear that it’s still in a research realm, but stay tuned we’re going to learn a lot more every day.”

For Rob he sees his story as a message of hope to people who are paralysed and as for walking again: “I see it as a major possibility.”

JustGiving Page Of The Week: Lauren Deer

May 20, 2011

This week’s JustGiving Page Of The Week goes to Lauren Deer, who is fundraising for Help For Heroes. Good luck Lauren!