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Poll Shows Support For Change In Assisted Dying Law

August 3, 2011

Only one in three people would change the law to allow doctors to help physically disabled adults who are not terminally ill to die, a poll has showed.

The survey of more than 2,000 people, commissioned by campaigners for a change in the law on assisted dying, showed most people saw a difference between helping terminally ill adults to die and assistance for those who were not dying.

Three in four people said terminally ill adults who want to die should be able to ask their doctor for help, while only one in three said physically disabled adults who were not terminally ill should have the same right.

Sarah Wootton, chief executive of Dignity in Dying, said: “The results clearly show that the public, like Dignity in Dying, support a change in the law to allow assisted dying whereby a terminally ill, mentally competent adult can ask for help to die in their final days or weeks if their suffering becomes unbearable.

“The majority of the public do not support legalising assisted suicide where non-terminally ill people are given assistance to die at their request. The law should reflect this important difference.”

She went on: “Again, the public have spoken in favour of greater choice at the end of life; it is now time for decision-makers and healthcare professionals to engage with how we ensure that all people can have what they consider to be a good death.

“The failure to do so creates a situation in which some people take matters into their own hands.”

Dr Peter Saunders, campaign director of the Care Not Killing Alliance, said: “The pro-euthanasia lobby have commissioned this survey to bolster support for their campaign to make assisted suicide legal for people who are terminally ill but they have so far failed to come up with precise definitions of ‘terminally ill’ or ‘disabled’ that have satisfied decision-makers and legislators.

“Disabled people and terminally ill people are not distinct groups – many disabled people are terminally ill and many terminally ill people are disabled.”

A change in the law would “inevitably place pressure on vulnerable people to end their lives and expose them to exploitation and abuse by those with an interest, financial or otherwise, in their deaths”, he said.

The study was carried out to mark the 50th anniversary of the Suicide Act, which received royal assent on August 3 1961.

The Commission on Assisted Dying, an inquiry being held at the central London headquarters of thinktank Demos, is considering what system, if any, should exist to allow people to be helped to die and whether changes should be introduced to the law.

It is reviewing evidence from experts and the public and is due to publish its final document in December.

Assisted suicide remains a criminal offence in England and Wales, punishable by up to 14 years in prison, but individual decisions on prosecution are made on the circumstances of each case.

Top Gear Chief Apologises After Presenters Use Disabled Parking Bays

August 3, 2011

The executive producer of Top Gear has apologised after the show’s presenters got into hot water again with viewers – and this time for parking in disabled bays.

On Sunday night’s episode Jeremy Clarkson and James May tried out electric cars by driving them to Cleethorpes, Lincolnshire, where they pulled into a car park to discuss the merits of the motors.

But instead of using standard parking spaces, the road hogs parked in spaces for disabled bays.

During the slot about electric cars, Jeremy Clarkson – driving a £31,000 Nissan Leaf – and James May – driving a £33,000 Peugeot iOn – discussed the merits of non-petrol cars, asking ‘should you buy an electric car?’

After parking up in the disabled bays the pair laughed and joked about the costs of the cars and the electric motors – which are capable of a top speed of up to 90mph.

They also joked about the luggage space and how electric cars had to be fitted with special windscreen wipers which make barely any noise.

But it was only when they started to walk away did shocked viewers realised where the pair were parked.

Andy Wilman responded to complaints by penning an explanation on the show’s blog.

He said the programme makers had permission to use the bays for ‘a quiet spot to film in’ and there were three other unused bays available all the time.

He pleaded with disgruntled viewers to vent their fury at producers, rather than the presenters who are renowned for making controversial remarks and pulling stunts.

‘For those who are cross with us, please direct your anger towards myself and the production team, rather than at Jeremy and James,’ he wrote.

‘Both presenters expressed deep concern to the film crew and me about using the disabled bays prior to filming, because of the disrespectful impression it would convey.

‘They only capitulated when we assured them the parking had been approved by the owner, and that the disabled bay markings would not appear on television.

‘This was our fault, not theirs, and we unreservedly apologise to all the viewers we have upset as a consequence.’

It was the latest in a string of apologies the BBC have had to issue over the programme.

Earlier this year, the BBC apologised to the Mexican ambassador over remarks made by Clarkson, May and co-host Richard Hammond.

In the episode, broadcast on January 30, Hammond joked that Mexican cars reflected national characteristics, saying they were ‘just going to be lazy, feckless, flatulent oaf with a moustache, leaning against a fence asleep, looking at a cactus with a blanket with a hole in the middle on as a coat’.

May described Mexican food as ‘like sick with cheese on it’ and Clarkson predicted they would not get any complaints about the show because ‘at the Mexican embassy, the ambassador is going to be sitting there with a remote control like this (snores). They won’t complain, it’s fine’.

Papworth Trust Survey On DLA

August 2, 2011

Cross posted with permission from here.

The Papworth Trust are running a survey on DLA – how you feel about the proposals to replace it with Personal Independence Payments, what it would mean to your life if you no longer qualify under the new rules, etc.

If you’d like to help, it’s anonymous unless you want to leave details at the end and every view counts!!

http://www.surveymonkey.com/s/dlachanges)

Ade Adepitan On The Importance Of The Paralympics

August 2, 2011

LONDON 2012 is a year away – and that includes the Paralympic Games.

Wheelchair basketball player Ade Adepitan MBE was a member of the bronze medal winning Great Britain team at the 2004 Paralympics in Athens.

Here the BBC One advert star tells us why the Paralympics are so crucial.

I CONTRACTED polio when I was six months old and lost my left leg.

At school I was very interested in sport and used calipers to walk and play football. My dream was to be a top athlete.

When I was 13 I discovered wheelchair basketball, which changed my life.

I realised I COULD be an elite athlete after all. I could compete on a level playing field with other people like me and my talent would shine through.

Discovering the Paralympics was extremely empowering and it changed my perception of disability.

I used to think about disability as all of the things you couldn’t do.

Entering the world of the Paralympics, I realised what these guys did in the wheelchairs was cool – it was almost like watching an extreme sport.

It made me feel proud of who I was. You are going to see thousands of athletes next year who are proud of who they are.

Last year, for example, I went to watch some of the junior wheelchair basketball players and they had a different type of swagger – a twinkle in their eyes because they knew 2012 was coming up.

These kids know they can get worldwide recognition as top athletes.

The Paralympic Games will also change the perception of able-bodied people watching – because they will be thinking “I can’t serve a tennis ball at 100mph standing up, let alone sitting in a wheelchair, or run the 400m like Oscar Pistorius.”

More than the millions of pounds and stadia, the real legacy of London 2012 will be how it changes people’s mindsets.

Everyone is excited about the Olympics but we shouldn’t allow it to overshadow the Paralympics. As a sportsman, my career meant all to me. For 15 years of my life it consumed me and it was the only thing I thought about.

I would’ve found it very hard to see my career as complete if I hadn’t competed in the Paralympics.

Which is why I’m looking forward to them as much – if not more – than the Olympics.

Sonny Wells And His Mum On The Dangers Of Tombstoning

August 2, 2011

The practice of tombstoning – jumping off high cliffs or piers into the sea unsupervised, is causing concern.

The rescue services say a least 14 people have died as a result of it in the last five years.

There are concerns many people are still ignoring warnings about the risks.

Mark Bell from the RNLI in Brighton explained to the BBC’s Graham Satchell what they are doing to try and stop peope tombstoning.

The video starts with Sonny Wells and his mum talking about his accident and the dangers of tombstoning. Sonny has featured on Same Difference before. I’m pleased to see that he is still trying to raise awareness of the dangers of the activity that caused his accident and changed his life. 

Dyslexia Makes Voices Hard To Recognise, Finds Study

August 2, 2011

People with dyslexia struggle to recognise familiar voices, scientists suggest.

The finding is the first tentative evidence that small sounds in the human voice that vary between people are difficult for dyslexics to hear.

Writing in the journal Science, the scientists say that many people could have some degree of “voice blindness”.

And by studying it, scientists hope to better understand how the human brain has evolved to recognise speech.

Humans rely on small sounds called phonemes to tell one person from another.

As we first try to form the word dog, for example, phonemes are the “duh”-“og”-“guh” sounds that our parents prompt us to make.

But as we master the ability to read, we become less reliant on recognising these sounds to read, and eventually stop noticing them.

Despite ignoring them, however, phonemes remain important for voice recognition.

The tiny inflections in the way people pronounce phonemes gives a listener cues to tell one voice from another.

Because people who suffer from dyslexia are known to struggle with phonemes when reading, a US-based team of scientists wondered whether they might also struggle hearing them in people’s voices.

Listen well

To investigate, the team grouped 30 people of similar age, education and IQ into two camps: those with and without a history of dyslexia.

The subjects then went through a training period to learn to associate 10 different voices – half speaking English and half speaking Chinese – with 10 computer-generated avatars.

The subjects were then later quizzed on how many of those voices they could match to the avatars.

Non-dyslexics outperformed people with a history of dyslexia by 40% when listening to English.

However, this advantage disappeared when the groups were listening to Chinese.

Dorothy Bishop from the University of Oxford thinks that this is because “when [they] are listening to Chinese, it is a level playing field, because no one has learned to hear [Chinese] phonemes”.

The researchers think that dyslexics don’t have as comprehensive a phoneme sound library in their heads, and so they struggle when they hear phonemes spoken by unfamiliar voices because their “reference copy” isn’t as well-defined.

“It is a very interests result… the only thing that I would really like to see to convince me… is if they were to repeat the experiment using Jabberwocky.”

Using Jabberwocky, the nonsense poem by Lewis Carroll, would allow the researchers to determine whether the listeners identify who’s who from the meaning of what they are saying, or whether listeners are purely relying on the phonemes.

Dr Bishop speculated that non-dyslexics may be worse at extracting the meaning of the words, meaning they under perform in this task.

Understanding the mechanics of voice recognition is important, said the study’s lead author Tyler Perrachione from the Massachusetts Institute of Technology in Cambridge, US, because it allows a listener to pinpoint a familiar voice above the hubbub of a crowded room.

Mr Perrachione explained that very little is known about voice blindness, which is formally called phonagnosia.

“In reality, phonagnosia is probably much more common,” he explained, “but people who don’t recognize that voices sound different may not even realize they lack the ability to tell voices apart.”

Nicky Clark V Liz Jones

August 1, 2011

Nicky Clark makes good points in this piece at the Guardian’s Joe Public blog today.

Flawed Care Home System Insults The Vulnerable

August 1, 2011

This was yesterday’s Observer editorial.

Blind People Criticise New Blackpool Prom Layout

August 1, 2011

A major scheme to revamp Blackpool Promenade has been criticised by blind people.

They say changes to the road layout, particularly the removal of kerbstones, make the road more unsafe for them.

The £100m regeneration of the promenade has seen improved tram tracks and better sea defences but disabled people claim their safety has been put at risk.

Blackpool Borough Council said the layout is safer than before.

John Gardner, who is visually impaired, said it is difficult to know where the road is.

He said: “There is no indication [where the road is] no tactile or colour contrast or pelican crossings.”

Another visually impaired person Carol Holmes added: “There is just nothing for my guide dog to recognise and walk with.

“I’m meant to feel comfortable trying to cross the road among the traffic, but I don’t.”

Blackpool Council said it was important the scheme, known as shared space, is given more time.

Peter Cross, head of transportation for the council said: “Schemes of this type have a better safety record than the traditional highway layout.

“A lot of it is fear and perception of something different.”

Herne Bay Care Home Owner Withdraws Closure Appeal

August 1, 2011

The owner of a Kent care home that was closed down after its registration was cancelled has withdrawn his appeal against the decision.

The Sea View Lodge had looked after elderly people and those with learning disabilities, aged between 25 and 80.

In June the Care Quality Commission (CQC) said the registration of the Herne Bay care home was cancelled after concerns of neglect and abuse.

Owner Shahid Sheikh withdrew his appeal against the decision on 27 July.

Denies allegations

He said: “It was becoming too expensive [the legal fees]. I’m not working, I have no source of income. That was the last care home I had.

“On balance I decided not to go ahead with it.”

Kent County Council suspended new placements at the Sea View Lodge on 27 May because of poor practice.

Its eight residents were all placed in respite care or other nursing homes.

The CQC said it made an urgent application to Canterbury magistrates on 8 June to cancel the home’s registration “to protect people at Sea View Lodge”.

Mr Sheikh said he denied the allegations, disputed the findings of the SQC “100%” and had a written statements from the families of patients praising him.

The care home has now been put up for sale.

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

Haringey Care Home Closures Reconsidered

July 31, 2011

The proposed closure of four care homes in north London is to be reconsidered by the local authority which runs them.

Haringey Council had wanted to save money by removing facilities for elderly people at Broadwater Lodge and The Red House, both in Tottenham, and Cranwood in Muswell Hill.

It also planned to shut a respite care home in Whitehall Street, Tottenham, for adults with learning difficulties.

But Lib Dem councillors objected and a scrutiny panel is to review the idea.

The panel will be a cross-party committee of councillors who do not sit on Haringey’s cabinet.

They will consider the views of those who object to the proposals, as well as the Labour-run council’s position, and then prepare a report for cabinet members.

‘Extensive consultations’

Up to 89 residents would be affected by the closures, which were intended to take place by 2013.

The council said residents and their families would be given “every possible support” in identifying another suitable home, “with plenty of time to consider an appropriate placement”.

In February, the council approved £84m of cuts to its £273m total budget over the next three years.

“We very much regret that we have been forced to take these decisions as a result of unprecedented government-imposed cuts,” said Councillor Dilek Dogus, who is a cabinet member for health and adult services.

The scrutiny panel’s report is expected to be completed next month.

Major Stem Cell Trial For MS Patients

July 29, 2011

A major clinical trial will investigate whether stem cells can be safely used to treat multiple sclerosis (MS).

It is hoped eventually to slow, stop or even reverse the damage MS causes to the brain and spinal cord.

The trial, involving up to 150 patients across Europe, is due to start later this year.

Dr Paolo Muraro from Imperial College London said: “There is very strong pre-clinical evidence that stem cells might be an effective treatment.”

Researchers will collect stem cells from the bone marrow of patients, grow them in the laboratory and then re-inject them into their blood.

The stem cells will make their way to the brain where it is hoped that they will repair the damage caused by MS.

The research has been part-funded by the UK’s MS Society, which is concerned about the availability of unproven stem cell treatments.

In recent years many people living with MS have been attracted to overseas stem cell clinics which claim to cure long-term conditions in exchange for large amounts of money.

But there is no proven stem cell therapy available for MS anywhere in the world.

The MS Society hopes these new trials will eventually lead to a proven treatment – and a reduction in the draw of overseas treatments.

Common condition

MS is the most common neurological condition to affect young people in the UK.

Three million people are thought to be affected worldwide and up to 100,000 in the UK.

The condition is caused by the body’s own immune system attacking and damaging a substance called myelin in the brain and nerve cells.

The myelin damage disrupts messages from the brain to the body which leads to a number of symptoms such as sight loss, bladder and bowel problems, muscle stiffness and eventually physical disability.

Drugs are available to alleviate the symptoms – but they do not prevent the progression of the condition.

Experiments in test tubes and laboratory animals suggest stem cells extracted from bone marrow may be able to offer a more effective treatment.

Their role in the bone marrow is to protect the cells that make blood. But they also seem to protect myelin from attack by the immune system.

There is also some evidence that these cells might also be able to repair damaged tissue.

Hold potential

Dr Doug Brown, of the MS Society, said: “These experiments have confirmed that these stem cells hold that potential – but these need to be confirmed in large scale clinical trials.”

There is some way to go, however, before laboratory promise can be translated into a treatment that can be offered to patients.

The international team will begin so-called phase two clinical trials in six months’ time designed to determine whether the treatment is safe and effective.

It will take five years to carry out and assess the results of the trials after which large phase three trials may be required.

But Dr Muraro believes that the stem cell approach has real potential.

He said: “The great hope is the fact that we are exploiting a biological system that has evolved over millions of years and harnessing it for treatment that takes advantage of the stem cells’ flexibility.”

Sir Richard Sykes, chair of the UK Stem Cell Foundation, said Dr Muraro’s research was the first of its kind to take place in the UK.

“Given the high incidence of MS in the UK in comparison to other countries, I am delighted that we have at last progressed stem cell research to this stage, which will bring much-needed hope to so many people affected by this devastating condition.”

The MS Society is also funding two other stem cell studies.

One, based at Queen Mary Hospital, London will examine how stem cells made from the brains of aborted foetuses can be used to repair nerve damage in people with MS.

The other, based at the University of Nottingham, will compare stem cells from people with a progressive form of MS to those without the condition to aid the discovery of effective treatments.

ME Researchers Face ‘Torrent Of Abuse’

July 29, 2011

Scientists working on Chronic Fatigue Syndrome (CFS), or ME, say they are being subjected to a campaign of vicious abuse and intimidation that is hampering research into the causes of the condition.

The harassment has included death threats, vilification on internet websites, and a series of official complaints alleging both personal and professional misconduct to universities, ethical oversight committees and the General Medical Council (GMC).

“It’s direct intimidation in the sense of letters, emails, occasional phone calls and threats,” says Professor Simon Wessely, of King’s College London, who has received a series of death threats and threatening phone calls, and now has his mail routinely scanned for suspect devices.

“But more often indirect intimidation through my employer or the GMC. All of it intended to denigrate and try and make you into a leper.”

Behind the vitriolic nature of the attacks, the core objection, by some activists, is the association of Chronic Fatigue Syndrome with mental illness.

They claim the real cause is biological and want research to focus exclusively on identifying the – as yet undiscovered – virus responsible.

“Sadly some of the motivation seems to come from people who believe that any connection with psychiatry is tantamount to saying there is nothing wrong with you, go away, you’re not really ill,” says Dr Wessely.

“That’s profoundly misguided. They fall victim to the label, and believe that the mere involvement of psychiatry denigrates them and denigrates the condition.”

Chronic Fatigue Syndrome is a debilitating condition involving severe fatigue, painful muscles and joints, gastric complaints and poor memory and concentration. It is estimated there may be as many as a quarter of a million sufferers across the UK, but exactly what causes it is still a mystery.

That has been incredibly frustrating for patients who have often received short-shrift from doctors, and been branded as malingerers – the victims of “yuppy flu” – in the media. Even the existence of the condition has only recently received widespread acknowledgement by the medical establishment.

Speaking on the programme on Friday, ME Association’s Dr Charles Shepherd condemned the abuse of researchers, but said sufferers had a justifiable complaint that almost no government-funded research was looking at the bio-medical aspects of the illness.

“The anger, the frustration, is the fact that all this effort, all this government-funding, has just been going to the psychological side,” he said.

Hostility towards a psychiatric explanation for Chronic Fatigue Syndrome reached a peak in 2009 when research published in the journal Science appeared to show a link to the XMRV retrovirus.

But a series of follow-up studies failed to replicate the finding, unleashing another torrent of abuse – this time aimed at virologists, including Professor Myra McClure, of Imperial College, London.

“It really was quite staggeringly shocking, and this was all from patients who seemed to think that I had some vested interest in not finding this virus,” she said. “I couldn’t understand, and still can’t to this day, what the logic of that was. Any virologist wants to find a new virus.”

Chronic Fatigue Syndrome

  • Chronic Fatigue Syndrome or ME (Myalgic Encephalopathy)is a debilitating condition involving severe fatigue, painful muscles and joints, gastric complaints and poor memory and concentration
  • It can leave patients bed-ridden in severe cases.
  • Up to a quarter of a million people suffer from the disorder in the UK.

Professor McClure says she will not be doing any further research in this area, and that may be the single most important consequence of this campaign of abuse and intimidation.

According to the Wellcome Trust’s Dr Mark Walport it would be a tragedy if serious researchers are put off working on Chronic Fatigue Syndrome.

“We clearly don’t yet understand exactly what’s going on, and if we’re going to find out it needs good scientists to work on it,” he says.

“But why would any scientist work on it if they know that all they’re going to receive is a torrent of abuse?”

Autism Centre’s Future Uncertain

July 29, 2011

A specialist autism care centre for adults in Withernsea could close due to a lack of referrals from a council.

The Cascade Autism Living Solutions Centre was set up 15 months ago by Pam Nicholson, whose own son has autism.

The centre currently has only two residents and Mrs Nicholson claims that the East Riding of Yorkshire Council is not referring people to the facility.

The council said that it used the “most appropriate service for their [clients’] needs”.

‘Get into flats’

The building has 24 individual apartments and provides “supported home living” for adults with autism, a developmental disability that affects how people communicate with others.

Residents have their own living space and are provided with individual support from care workers.

Mrs Nicholson said that young adults with autism often struggled to live on their own.

She said: “Most youngsters at 18 leave home. They go to university, they get into flats, our clients can’t do it on their own. But with support they can live fulfilling lives.”

One of the residents is 19-year-old Andrew Turner. His father Paul said living in the centre had helped his son.

“In the year that he’s been here, for us to be now looking and saying ‘yes this is now attainable’, him living as independently as possible.

Raised concerns

“Compared to where we were when we started I would have said that it was a dream that was probably not going to be able to happen.

“The improvement that we’ve had in the last year I would say that is attainable.”

Mrs Nicholson said the council had raised concerns about the location of the centre, staff training and transportation costs.

She said the eight members of staff had, or were undergoing, training to NVQ Level 2, as well as receiving specialist training in autism.

Mrs Nicholson said she was still unsure as to why the council were not sending clients to her.

East Riding of Yorkshire Council refused to go in to detail about why so few referrals were being made to the centre.

In a statement, it said: “Adult social care staff will always signpost individuals to the most appropriate service for their needs.

“These needs will always take priority over the business requirements of any provider.”

Castlebeck Care Concerns

July 28, 2011

There are “serious concerns” about care at four Castlebeck-run services for people with learning difficulties, the Care Quality Commission has said.

It named Croxton Lodge, Leicestershire; Rose Villa, Bristol; Arden Vale, West Midlands; and Cedar Vale, Nottingham.

But the CQC said the problems it had found were not on the scale of those that led to the closure of Castlebeck’s Winterbourne View home, near Bristol.

The company said it would “urgently address” the CQC concerns.

The care regulator’s investigation was launched following the closure of Winterbourne View after a BBC Panorama investigation had captured footage of some of its most vulnerable patients being repeatedly pinned down, slapped, taunted and teased.

Twelve people have been arrested and released on bail in connection with the alleged abuse, pending further inquiries.

‘Demanded improvements’

A further seven hospitals or care homes run by Castlebeck do not fully comply with essential standards of quality and safety, said the CQC report.

Twelve Castlebeck-run services were found to be compliant with the essential standards which were reviewed.

The commission said it could not comment on the specific concerns it had raised.

However, in a statement Castlebeck said the report highlighted concerns over training quality, levels of staff experience, inadequate governance reporting systems, a failure to include people in decisions about their care and a lack of interesting activities for them.

CQC chief executive Cynthia Bower said: “Our inspections have found a range of problems, many of which are found in a number of different services.

“This clearly suggests that there are problems that Castlebeck needs to address at a corporate level – the company needs to make root-and-branch improvements to its services and processes.”

‘Paramount importance’

She said the commission had demanded improvements and where it had immediate concerns about people’s safety, it had taken action, such as closing Winterbourne View.

The BBC learned in July that four members of staff had been suspended at Rose Villa, a nine-bed rehabilitation centre in the Brislington area of Bristol, following allegations of misconduct.

Castlebeck chief executive Lee Reed said the company acknowledged some of its services “have not met the high standards we would expect to achieve, or which the people in our care and their families rightfully deserve.

“We are committed to addressing all of these shortcomings as a matter of urgency.”

He said an internal review was being carried out and that action had already been taken.

“The safety and well-being of people in our care will always be of paramount importance to us and we will have a zero tolerance policy towards inappropriate behaviour directed against those who use our services.

“We remain deeply sorry for all that happened at Winterbourne View and also apologise for any incidences where our services have in the past not met the high standards that we, those we support and their families, expect and deserve.”

The chief executive of charity Mencap, Mark Goldring, said: “These types of facilities… have been used by the authorities as a dumping ground for more vulnerable adults.

“These hospitals should only be used when they are really needed for assessment and treatment. For most people, smaller, local services, which are built around the needs of the individual, are more suitable.”

Helga Pile from the public service workers union Unison said the privatised model of care forces “corners to be cut”.

“Elderly care is a service where mandatory regulation is vital to protect their interests,” she said.

She added that a review into elderly care in England by the Department of Health “must lead to a properly resourced regulation and inspection system and tougher standards on workforce training and support”.

Care Services Minister Paul Burstow said the government was working to ensure such a situation did not emerge again.

He told the BBC it was working with the local councils and the local NHS who arrange placements “to make sure that they’re now taking the necessary steps to assure us that they are safeguarding the welfare of people living in these institutions, and also reassuring relatives as well that safety and welfare and quality are the key considerations”.

OfCom Demands Better Services For Disabled People

July 28, 2011

People with disabilities who rely on communication services to make phone calls are set to benefit from new measures being proposed by the communications regulator Ofcom.

By law, communication providers must provide text relay services for phone users with hearing and/or speech impairments. The service allows users to type messages into a textphone, which are delivered by a relay assistant to the recipient. The assistant then converts their reply back to text for the user.

Ofcom research has shown that users found the current communication services slow, with conversations sometimes failing to flow naturally. Under the current service, users have to say “go ahead” after each part of a conversation.

The new features on the text relay service will include allowing users to interject during a conversation, instead of having to wait until the end of a message. They will also allow the service to be accessed on mainstream consumer electronics devices such as PCs and netbooks, in addition to existing relay equipment, such as textphones.

Ofcom’s consumer group director, Claudio Pollack, said: “People with disabilities can face barriers when using communications services. Although the wide availability and use of broadband and mobile text services has provided greater opportunities for disabled people to communicate, people with hearing and/or speech impairments continue to meet barriers when using voice telephony.

“The proposed measures aim to reduce these barriers by allowing conversations to flow naturally in real time.”

Ofcom is also proposing the introduction of video relay on a restricted basis for registered British Sign Language users. Under the Communications Act 2003, Ofcom has a duty to cater for the needs of disabled people and the elderly.

In May, the regulator introduced an emergency SMS scheme for 14,500 users with hearing and speech impediments to text the details of incidents to the emergency services instead of calling 999.

Winterbourne View: Workers Raised Staff Behaviour Fears For 5 Years

July 28, 2011

Workers at a hospital near Bristol where alleged abuse was filmed had raised earlier concerns about staff behaviour, the BBC has learned.

South Gloucestershire Council said, in response to a Freedom of Information request, 19 concerns about Winterbourne View were raised in five years.

BBC Panorama secretly filmed patients being pinned down, slapped and taunted at the hospital, which has been closed.

The council said each of the 19 alerts would be independently reviewed.

A spokesman said 17 referrals had been made by managers and two by charge nurses, between the time the hospital opened in 2006 and 12 May 2011, when the authority learned of the Panorama programme.

He said 15 of the alerts concerned the behaviour of members of staff.

Andrew Hanham, a solicitor representing seven families who had relatives at Winterbourne View, said the amount of referrals was a “big number”.

“We do know that there was some real trouble brewing underneath,” he said.

One of the nurses to raise a concern was whistleblower Terry Bryan, who alerted the BBC with his concerns about some staff, which led to Panorama’s investigation.

After the programme was broadcast on 31 May, Castlebeck, the firm which ran the hospital, apologised and launched an internal investigation.

Earlier this month, the Care Quality Commission published its findings after an inspection of Winterbourne View.

‘Systematic failure’

The report found Castlebeck Care had failed to ensure residents living at the unit were adequately protected from risk, including the risks of unsafe practices by its own staff.

It said: “There was a systemic failure to protect people or to investigate allegations of abuse.

“The provider had failed in its legal duty to notify the Care Quality Commission of serious incidents including injuries to patients or occasions when they had gone missing.”

Inspectors also noted staff did not appear to understand the needs of the people in their care and said “some staff were too ready to use methods of restraint without considering alternatives”.

Twelve people have been arrested and released on bail in connection with the alleged abuse, pending further inquiries.

Winterbourne View’s 24 patients were transferred from the hospital when it was closed, in June.

A Tribute Post For Kelly Mullan

July 28, 2011

I have just received the latest issue of Disability Now. I was very sad to read a notice of the death of their Editorial Assistant, Kelly Mullan.

I can’t say I knew her personally, but, being  a journalist myself, I have emailed Kelly several times with article ideas for the magazine. She was always helpful to me. So, readers, for what it’s worth, take this as a tribute post for her.

Genetic Clue To ‘Elephant Man’s’ Disability, Proteus Syndrome

July 28, 2011

A century after the death of the Elephant Man, whose hideous disfigurement turned him into a medical curiosity, scientists believe they may have solved the puzzle of what caused his condition.

American researchers have identified a genetic mutation that causes Proteus syndrome, a rare disorder in which tissue and bone grow massively out of proportion. About 500 people are known to to be living with the condition, which stems from a spontaneous mutation in the embryo during pregnancy. Sufferers endure gross deformity, typically to their head, hands and feet, and become excluded from society and lead isolated lives as a result.

Scientists from the National Institutes of Health in Washington who made the discovery say they hope it will lead to the development of treatments for the condition. It could also yield agents effective against cancer, which is caused by the overgrowth of cells in different regions of the body.

Now they plan to test DNA from the skeleton of Joseph Merrick, who briefly gained celebrity and earned his living by being displayed across England and Europe, to establish whether Proteus syndrome was the cause of his deformity. His story gained wide public attention in 1980 through the play and film The Elephant Man. Mr Merrick’s abnormalities appeared early in childhood in the form of thick and lumpy skin, enlarged lips and a bony protuberance on his forehead. One of his arms and both feet became enlarged and by adulthood he had to sleep sitting up because of the size and weight of his head.

He was befriended by Sir Frederick Treves, a surgeon at the London Hospital, where he stayed for the last years of his life, dying there in 1890 at the age of 27. The official cause of death was asphyxia but Sir Frederick believed he died of a dislocated neck.

Mr Merrick’s skeleton is preserved in the hospital’s pathology collection and tissue from it will be used by the US researchers to test his century-old DNA. However, the task facing the scientists is tricky because the gene mutation responsible for Proteus syndrome is not distributed evenly throughout the body. In taking a small sample, the scientists may miss cells carrying the gene.

Eric Green, director of the National Human Genome Research Institute, part of the NIH, who led the study published in The New England Journal of Medicine, said: “This rare disorder has been the focus of curiosity and medical observation for decades, but, until now, has never been medically explained. With the analysis reported here, patients and families who face this condition have hope for future therapies.”

Alf Winter, 90, Cares For Son With CP, 55

July 27, 2011

All parent carers deserve gold medals, but I hope you’ll agree Alf Winter is more special than most!

A 90-year-old carer from Leicestershire is concerned about what will happen to his disabled son when he is no longer able to support him.

Alf Winter lives in sheltered housing in Ashby-de-la-Zouch with 55-year-old Keith, who has cerebral palsy.

The pensioner is one of an estimated 77,000 carers over the age of 65 who live in the East Midlands.

“There’s nobody else to do it. It’s just perseverance – I get on and do it,” said Mr Winter.

He does all the household cleaning, shopping and washing, still drives, and cooks full meals every day.

Eileen Wheeler from Derwent Living, which runs the housing where they live, said: “I think Alf’s absolutely phenomenal but he’s not aware of it.

“He’s so humble he just carries on every day he does what he’s got to do. Normally we have children and they fly [the nest], but Alf’s been dedicated to Keith for 55 years.”

Mr Winter believes the responsibility keeps him feeling young.

“I think if I didn’t do it I should get old,” he said.

However he is worried about continuing the same level of care in the future, and what this will mean for his son.

Ageing population

Carers UK said improved healthcare services and advances in medical technology meant people were living longer, placing increased pressure on families to care for elderly and disabled relatives.

“We’re very concerned. The directors of social services across all of England have said they’ll be about £1bn cuts to social care services this year,” said Steve McIntosh from the charity.

“We’re really worried this is going to put additional pressure on all types of carers – but are particularly concerned about carers who may have ill health problems themselves, and that may be particularly the case for older carers.”

Based on the 2001 Census, Carers UK estimate the number of carers in the UK has increased by 9% in the last 10 years – rising to 15% for carers over the age of 65.

The last census recorded a total of 433,923 carers in the East Midlands – with 77,249 over 65 and 25,876 over 75.

Thalidomide Returns To Treat Cancer

July 27, 2011

I’m unpleasantly surprised to read that Thalidomide has been approved to treat cancer. Does anyone have any thoughts on this idea? I would be particularly interested to hear from any Thalidomiders, if possible.

Disability Benefit Figures: Charities React

July 27, 2011

Ministers were accused of labelling disabled people as scroungers yesterday, after the Government said that only one in 14 people applying for disability benefit has a genuine claim.

Disability charities said the figure was misleading and that ministers’ comments were likely to lead to a rise in hatred towards the disabled.

Just 7 per cent of people applying for the new incapacity benefit, Employment Support Allowance, were deemed too sick to work after an initial assessment, according to the Department for Work and Pensions figures released yesterday. The statistics suggest that 39 per cent of new claimants are fully fit to work, while another 17 per cent can do some work with the right support.

The Prime Minister used the figures to argue that Britain’s welfare system was broken and allows many fit and healthy people to claim benefits.

But the new Work Capability Assessment, the new test used to assess whether a disability claimant is capable of work, was dismissed as “flawed” by the House of Commons Work and Pensions Committee yesterday, and that this was borne out in the high number of successful appeals.

The Disability Benefits Consortium, which represents more than 50 organisations, said: “The Government’s presentation of the figures ignores the incredibly high barrier set for eligibility and the reality that many people with significant impairment are declared fit for work and denied appropriate support… It also overlooks the fact that four out of 10 appeals by claimants against the original decision are overturned. This rises significantly where the claimant has [legal] representation.”

Vicki Nash, from the mental health charity Mind, said: “The figures on how many people are fit for work are misleading. The benefit test as it stands is simply not sophisticated enough to examine where mental health problems can stop someone from coping and performing in the workplace… There are so many appeals, that the appeals system is struggling to cope.”

During a visit to Working Links in Caerphilly, a company that specialises in getting people into work, David Cameron dismissed criticism that there were no jobs because of the closure of local shops and factories.

He said: “I’m not saying it’s easy… but if you give people the skills, the confidence and the help, there are jobs and they can work.”

Wales Care Home To Close

July 27, 2011

Councillors have voted to close a residential home for adults with learning difficulties, despite a protest by staff and residents.

Closing the Pant yr Eithin home at Harlech will save Gwynedd council about £200,000 a year.

A report to councillors said the decision would lead to an improvement in the service in the long term.

Residents and staff protested outside the council chamber before the decision was taken.

Four of the six residents will be moved to another home, Tan y Marian, in Pwllheli.

Pant yr Eithin employs 16 staff and they will be given priority at the home in Pwllheli, according to a report to the council board on Tuesday.

‘Period of uncertainty’

It highlighted a study that said 40% of residential care costs relate to buildings, not the care.

A separate study found with an expected rise in the number of service users in Gwynedd, its current method of care would see costs rise £3m to £15m between 2007 to 2020 unless changes were made.

The report said: “We are aware through the consultation that users, carers and members of the public have expectations in relation to local services, but also services that give better choice and flexibility.

“There is agreement that the traditional model of residential care is unsuitable for the future and this is an integral part of our vision for developing a service for the future.”

The report went on to say that the decision would end a period of uncertainty for residents and their families after almost 10 years of discussions over the future of learning disabilities residential homes.

How Do You Solve A Problem Like ATOS?

July 27, 2011

Sharing this article by Mark Steel, from today’s Independent, because it made me smile.

How do YOU suggest we cut the deficit then? You’ll be asked this if you ever oppose a cost-cutting scheme, such as merging the sewer system with the library service or something. So here’s one answer, we could pay a bit less to ATOS, a company that receives £100m a year from the Government for assessing who should be cut off from disability benefit.

The method they choose is to interview each claimant, asking them a series of questions such as, “Do you look after your own pets?” Because clearly if someone can feed a hamster they’re capable of driving a fork-lift truck. Another is “Do you cry?” If you do, you’re probably told it’s all very well being depressed but there’s no reason why you can’t get a job imitating actresses who’ve won an Oscar, or hiring yourself out to appear at funerals to make it seem the deceased knew more people than they did.

Related articles

During this questioning the interviewer taps the answers into their computer, which makes an automatic calculation as to whether the claimant loses their benefit. This is so much quicker as a method of assessing health than the old-fashioned way of examining someone.

Hospitals should follow this example. Instead of faffing about with X-rays and stethoscopes, the consultant could say, “Which do you prefer, pizza or a curry? Who would you rather have to dinner out of Fearne Cotton and Dermot O’Leary? OK, let’s see what the computer says – aah, you’ve got gallstones.”

Maybe the plan is to turn the whole process into a radio panel show called “Fit on the Fiddle”, in which claimants answer the questions from a panel including regular captain Gyles Brandreth. One man who might as well have done this was Larry Newman, who attended an ATOS interview with a terminal lung disease, when he could hardly breathe. So he took his medical records and ATOS ignored them, preferring their method of asking questions.

They decided there was nothing wrong with him so his benefit was cut, and a few weeks later, as the hospital attached a ventilator he’d have to wear permanently, with splendid jollity he said to his wife: “Still, at least I’m fit for work.” He died a few weeks later, and I expect if his wife took him in again now they’d still say there was nothing wrong with him and send him for an interview to be a town crier.

Still, the cuts have to be made somewhere so I suppose it’s only fair that the brunt of them should fall on the terminally ill. But here’s where it gets complicated. The ATOS system has worked so well that in the past three years 160,000 people have successfully appealed against their decision. So from now on perhaps they’ll use a more reliable method, such as rolling two dice and anyone who gets eight or over loses their money. Or they could still call people in for interviews but do three at a time while the assessor lines them up and goes, “Ip dip dog shit, you are not it”, and the loser has to crawl to the job centre.

The trouble is that these tribunals have cost £30m (and you’ll laugh at this bit), and that money is paid by the Government, out of taxes. So they still get paid the £100m, out of taxes, and all the mistakes are paid for out of more taxes.

It’s like a minicab firm that always takes you in the wrong direction, but you still have to pay them, then they charge you again to bring you back where you started. And to complete the analogy, on the way home they run someone over and shout: “If you can stroke a cat there’s nothing wrong with you”, as the victim is carried into the ambulance.

So here’s my suggestion. On live television ATOS are called in for an interview by a panel of disabled people, who ask them to mime looking after their pet, then assess whether they’re entitled to still get £100m or have to go and get a proper job.

Hot Tub Appeal For Girl With Rare Genetic Disability

July 26, 2011

The parents of a toddler with a rare genetic disorder say they are stunned by the response to an appeal for hydrotherapy to help their daughter.

Eighteen-month-old Maralise Van Wyk, from Bingham in Nottinghamshire, was diagnosed with Pontocerebellar Hypoplasia Type 2 (PCH2) in June.

Just one of five UK children with PCH2, Maralise’s muscles are constantly tense, only eased by warm water.

Following BBC coverage, a hot tub firm has come forward to donate a spa pool.

Lynda Smart, UK retail sales and marketing manager for Hotspring World, said she saw the online article about Maralise and felt she had to help.

“I have three healthy children and an 18-month-old grandchild and reading about Maralise just makes you so grateful for what you have,” said Mrs Smart.

“We are really thrilled to be able to help and put something back.”

Maralise’s parents, Becky and Jenico, said they were “completely overwhelmed” at the the messages and offers of help the family had received.

“Both Jenico and myself are overwhelmed at the generosity of Hotspring World for donating an incredible hot tub that will help our daughter Maralise,” said Mrs Van Wyk.

“Having access to daily hydrotherapy will have an amazing impact on her life and ease her discomfort.”

Hydrotherapy success

At the beginning of July, family and friends of Maralise started a project to try to turn the couple’s garage into a hydrotherapy centre, complete with hot tub and, if possible, sensory music and lights.

Mrs Van Wyk said: “There are no hydrotherapy facilities in Rushcliffe so Maralise goes to hydrotherapy once a week at the Rutland House School for Parents.

“The difference it makes to her and her muscles is just incredible. She is very uncomfortable a lot of the time and she will cry all day. The only thing that stops her crying is being in water.

“Maralise cannot travel far and at the moment I put her in the bath but as she’s getting bigger, she’s getting more difficult to handle and the reality is, I’m going to struggle to offer her that relaxation unless we can offer it at home.”

Mrs Van Wyk, 32, who has taken extended, unpaid maternity leave from her job as a secondary school teacher, administers drugs to Maralise 14 times a day.

“I also have to feed her with the pump through her tube, do physiotherapy every day and stretches, plus she has to spend time in her standing frame.

“She also has to have sensory stimulation so it is a full-time job. Maralise is a very poor sleeper so sometimes doing all that, day in, day out, on four hours’ sleep is tough.”

‘Amazing friends’

PCH2 is an auto-sominal recessive condition, meaning that both parents carry a faulty gene, resulting in a child with the disorder. Children born with the condition are not expected to live past infancy, medical studies say.

Becky is philosophical about Maralise and over the small chance she had of meeting a partner such as her South-African born husband of five years, who also carried the faulty gene.

“I believe Maralise was meant to be the way she is and change our lives for the better,” she said.

“I am such a different person now. Never for a second did I think I was going to have a disabled child and I have grieved for the loss of the life I thought I was going to have.

“I have met some amazing friends whose children have disabilities and I don’t worry about the small stuff. When she smiles or tries to babble back to you, it is all forgotten in an instant.”

The family has also been donated a floor by Nottinghamshire-based Slack and Co as well as plumbing advice from Mark One Services, SC Electrical and ex-builder Brian Cutts.

Mrs Van Wyk added: “We will be doing most of the work ourselves. We’ll attempt to put up some plasterboard but we need a plasterer, garage door and internal door.

“We have sold our car and raised £2,500 so far but to make it a really good, long-lasting hydrotherapy room, we need some help and to raise about £6,000.”

An Open Letter To My Disability

July 26, 2011

Dear Disability

You’ve been with me since birth. You’ve known me longer than I’ve known you. You knew me before I had a memory. Before I talked, before I walked. You knew me before anyone or anything else I’ve ever known.

You’ve caused me pain and tears. You’ve made me scream and shout and sob. You’ve been the reason for hospital stays and displays to students of all sorts of therapy.

You were with me in the new school, when I left all my old friends behind and entered a strange new world. A world where I knew no one- except you. I was called names, I was left out of children’s games. You made me feel different, and I didn’t want you there. Yet there you were, with me through it all.

You were with me when the teachers followed me through the new schools. When the children left me alone because they were scared of them- and you.

You were with me during every exam, even when I was alone in a room with only a computer for company. A computer, a teacher, and you. Pass or fail, you never, ever left.

At times I wondered what would happen if you left me. At times I wanted you to leave me. To go away, to get lost, to never come back.

You’ve stolen my best friends. You’ve stolen my hopes and dreams. This should have made me hate you- but here’s the surprising thing.

You also led me to my best friends. To the ones I can share anything and everything with. To the ones who truly understand me and who I truly understand. You are the reason why I know everyone and everything that really matters to me.

You are the reason for all my interests, all my pleasures, all my joys.  You are the biggest, the most important, and, I now realise, the best part of me.

You are with me when I am alone in an empty room. You are even with me in my sleep!

I don’t know where, what or who I would be if you were not with me. And now I know that I don’t want to know- because you are with me, you have always been with me, and I wouldn’t have it any other way.

New Figures Show Only 7% Of Disability Benefit Claimants Unfit For Work

July 26, 2011

Only 7% of people claiming sickness benefits were unable to do any sort of work, new figures have shown.

New claimants of Employment and Support Allowance (ESA) must undergo tests to see if they are capable of some sort of employment.

Of 1.3 million tests between October 2008 and November 2010, some 88,700 were considered unfit for any work.

The Department for Work and Pensions figures come on the day a report warned tests caused anxiety among claimants.

Fitness

ESA is the successor to Incapacity Benefit and claimants are required to go through a series of tests to judge their fitness for work.

The department has released the results from 1.3 million tests over a period of more than two years which showed:

  • 7% were incapable of any work
  • 17% were able to do some sort of work given the correct support
  • 39% were deemed to be fit for work and were moved onto jobseeker’s allowance
  • 36% dropped out of the application process
  • 1% of applications were still in progress

“These figures show that many people are able to work with the right help. We have strengthened the support now available tailoring it to individual needs so they can overcome whatever barriers they face,” said Work and Pensions Minister Steve Webb.

“Those who cannot work will always receive our unconditional support but for those who can work it is right that they get the help they need to get into employment.

“We are continuously improving the medical test to ensure that it is as fair and effective as possible.”

Criticism

The figures came as a report by the Work and Pensions Committee concluded that some vulnerable benefit claimants had payments stopped because of administrative errors in work assessments.

This affected some of the 1.5 million existing incapacity benefit claimants who are being reassessed with work capability assessments to encourage them back into jobs.

Overbooking of slots led to some people being marked as failing to attend, leading to suspended payments.

“The government’s aim of helping benefit claimants back into work is laudable, but the scale of the challenge should not be underestimated and nor should the level of anxiety which surrounds the process,” said Dame Anne Begg, who chairs the committee.

“People are suspicious that the government’s only objective is to save money.”

Tests

The reassessment process, which began nationwide in April, determines whether applicants are entitled to ESA, or are considered “fit for work”, in which case they are put on jobseeker’s allowance instead.

The assessments are carried out by Atos Healthcare. It was criticised in the committee’s report, although the committee accepted that some improvements had been made.

“[The service] has often fallen below the standard claimants rightly expect. This has contributed significantly to the widely felt mistrust of the whole process,” the report said.

It added that it was unacceptable that some people had found their benefits were stopped as a sanction for failing to attend the assessment when it was no fault of their own.

Cases had been the result of overbooking, administrative errors, or benefits claimants being too ill to attend the test.

Atos declined to comment on the report when contacted by the BBC.

The report called on the government to be more active in explaining the support available to people, irrespective of the outcome of the assessment.

It was also critical of the “irresponsible and inaccurate” media coverage of the issue which labelled some benefit claimants as “workshy”.

Brain Damaged Woman Responds To Music, Nurse Tells Court Of Protection

July 26, 2011

A “profoundly” brain-damaged woman whose relatives say should be allowed to die responds to music and conversation and tries to communicate, according to a nurse in charge of her team of carers.

The woman’s relatives want her “artificial nutrition and hydration” withdrawn, but a lawyer appointed by the Court of Protection to represent her interests opposes the application, arguing she is “otherwise clinically stable” and “has signs of awareness”.

The case is thought to be the first time a judge has been asked to rule on whether life-supporting treatment should be withdrawn from a person who is not in a persistent vegetative state but is “minimally conscious”. The woman cannot be named for legal reasons. The nurse’s views were outlined in a written witness statement, heard by the High Court Judge Mr Justice Baker yesterday.

In the statement, the nurse – who also cannot be named – says she fears the woman’s relatives do not “fully understand” how “unpleasant” withdrawing treatment might be.

Mr Justice Baker says the case is “unique” and it raises “very important issues of principle”. He has heard how the woman suffered “profound brain damage” in early 2003 after being diagnosed with viral encephalitis.

The woman was in a coma for several weeks and had initially been thought to be in a persistent vegetative state. But doctors later concluded that she was in fact minimally conscious.

Fit To Work Tests Are A Flawed Process, Says MPs’ Report

July 26, 2011

The government accepts that its drive to retest sickness benefits claimants has been a “flawed” process, a critical report by MPs into welfare reform concludes on Tuesday.

The introduction of new medical assessments to decide whether claimants are eligible for sickness benefits has prompted “fear and anxiety among vulnerable people”, the committee of MPs concludes, partly because the tests have resulted in large numbers of seriously unwell claimants being refused support.

The report states: “It is widely accepted that the Work Capability Assessment [WCA], as introduced in 2008, was flawed. This has been borne out by the high number of appeals and the high success rate of appellants. It was also reflected in the amount of evidence from individuals which expressed grievances with the way they were treated during the process and the accuracy of the outcome.” The MPs estimate the cost to the taxpayer of these appeals at around £50m a year.

The employment minister, Chris Grayling, has accepted that the WCA was initially “flawed” but stressed that significant changes have been introduced. The government acknowledges that “further refinements to the test” are still needed, says the report.

Government officials have failed to highlight the positive goals of helping more people back into work, the report adds, allowing the retesting process to be cast by parts of the media as a mission to weed out the “workshy”, “scroungers” and “benefit cheats”.

The work and pensions select committee chair Anne Begg MP said: “The government’s aim of helping benefit claimants back into work is laudable, but the scale of the challenge should not be underestimated and nor should the level of anxiety which surrounds the process.”

There was also criticism of Atos Healthcare, the company that receives £100m a year to carry out the medical tests to determine whether claimants are fit for work.

Atos staff are currently testing around 11,000 incapacity benefit claimants a week, to help judge whether they are eligible for benefit payments. Charities and MPs say they have been contacted by large numbers of people who felt their test results were simply wrong.

Begg said: “There have been failings in the service Atos Healthcare has provided, which has often fallen short of what claimants can rightly expect. This has contributed significantly to the mistrust which many claimants feel about the whole process. “We accept that considerable efforts have been made on the part of both Atos Healthcare and DWP to improve the quality of assessments, but the department needs to do more to ensure that Atos treats claimants properly and that it produces accurate assessments.”

The widow of one man, Larry Newman, who attended an Atos assessment, told the Guardian that her husband who suffered from a degenerative lung condition had been told he was fit for work despite the assessor never touching her husband nor even taking his pulse. In response Atos said it could not comment on individual cases and all complaints were thoroughly investigated.

Sue Royston of Citizens Advice told the committee: “A lot of disabled people want to get back into work, and we welcomed the help and support it would give. We are not very happy about the way it is working. We feel the test is too crude a test, and there are also problems with the way the assessment is actually carried out in practice.”

The report highlighted concerns about the number of testing centres that were not accessible to people with disabilities. “It is unacceptable that disabled people should be called to attend an assessment at a centre which is inappropriately located, inaccessible to them or where reasonable adjustments cannot be made to accommodate special requirements arising from their health condition,” the report states.

The report concluded that the government needs to try harder to explain its aims and to spread the “positive messages about the benefits of work and the support which is available to find work”, but adds: “A suspicion persists that the only objective of the government is to save money.”

A DWP spokesperson said: “The assessment is about helping people who can work get back into employment and we have been clear that disabled people who need unconditional support will receive it.

“It is vital that we also support people who were written off to a lifetime on benefits into jobs and our new Work Programme will help them overcome the barriers they face to get back into work.”

Is The Government Hiding Behind ATOS?

July 25, 2011

Over at the Guardian‘s Joe Public Blog today, Kaliya Franklin asks this very interesting question. As always, she has made me think! Any thoughts, readers?

New Hope For Muscular Dystrophy

July 25, 2011

A ‘molecular scalpel’ shows promise in patients with a deadly muscle wasting condition, according to researchers.

The gene for the protein dystrophin is damaged in people with Duchenne muscular dystrophy.

A drug trial on 19 children, published in the Lancet, used the ‘scalpel’ to removed the damage and restore dystrophin production.

The charity Muscular Dystrophy Campaign said there was “real hope for the future”.

Duchenne muscular dystrophy affects one in every 3,500 newborn boys.

Throughout life the muscle wastes away and children can need a wheelchair by the age of 10. The condition can become life-threatening before the age of 30, when it affects the muscles needed to breathe and pump blood around the body.

New approach

The instructions for making a protein are in the genetic code, but this can be disrupted by mutations or deletions in the code.

Stem cell and gene therapy research has tried to find ways of introducing a functional dystrophin gene.

This study tried to do the best it could with the damaged code.

The researchers at the Institute of Child Health at University College London injected tailored pieces of antisense RNA – the scalpel.

This removed a piece of the genetic code allowing it to be matched up either side of the mutation.

The result is a shorter, but still functional, dystrophin.

In the trial, seven out of the 19 children had some degree of dystrophin production restored – all of them were receiving the highest doses.

Professor Francesco Muntoni, lead researcher, told the BBC: “The best result was 20% of normal dystrophin levels. That is quite remarkable considering the study was for 12 weeks.

“I’ve worked with patients with Duchenne muscular dystrophy for many years and this is the first time we can say with confidence that we’ve made a significant breakthrough towards finding a targeted treatment.”

However, he said that as the scalpel was tailored to a specific mutation it could not benefit everyone, in this case around 13% of patients.

 “The second most common mutation affects 11% – which needs another scalpel.”

Dr Marita Pohlschmidt, director of the Muscular Dystrophy Campaign, said the study was “quite a big deal”.

“If we can change severe symptoms in Duchenne into something milder, that would be fantastic.

“We have fought to find a treatment for this devastating condition for the past 50 years. Today we can say with real confidence that we’re going to win that battle. Parents of these boys can have real hope for the future.”

My Review Of One Little Finger By Malini Chib

July 25, 2011

My latest article for Disability Horizons magazine went live today. It’s a review of a great disability-related book. One Little Finger is the autobiography of Malini Chib, an Indian woman with Cerebral Palsy.

Carer Jailed For £20000 Fraud

July 25, 2011

A woman who stole more than £20,000 from a severely disabled man has been sentenced to two years in prison.

Charlanne Pinfield, 38, was the principal carer for Roger La Croix, who is blind, bed-bound and has multiple sclerosis.

The mother-of-three, from Gregory’s Court in Worcester, ran up large debts in Mr La Croix’s name between 2008 and 2010, the city’s crown court heard.

She admitted fraud charges at an earlier hearing.

The court heard she frittered it away the money – stealing £20,400 in total.

At a hearing on 5 July at Worcester Crown Court, she admitted two counts of fraud by abuse of position and one count of dishonestly making false representation to make a gain for self or another.

Disabled Boy Hurt In Bungalow Crash

July 25, 2011

A disabled boy was seriously hurt when a car came off the road and crashed into a bungalow, trapping him under the vehicle in his bedroom.

The 13-year-old was stuck in his wheelchair under the Vauxhall Astra for an hour before he was freed, during the incident in Barnsley on Saturday.

Police said the boy had been sitting at his computer at the time of the crash.

Two of the boy’s brothers, aged eight and five, and a sister, three, who were playing in the bedroom were also hurt.

Their injuries were not serious and they were taken to Barnsley District General Hospital, from where they were later discharged.

South Yorkshire Police said the disabled boy had suffered a broken right leg in the crash.

It happened at about 11:50 BST in Meadstead Drive, Royston.

‘Through fencing’

The teenager was airlifted to hospital in Sheffield, where his condition is described as stable.

The driver, an 82-year-old man, and his male passenger were slightly injured and also taken to hospital.

A spokeswoman said: “A silver Vauxhall Astra is believed to have travelled down Manor Grove towards a T-junction with Meadstead Drive.

“It’s thought the car went across the junction, through fencing and then through a bedroom window of a bungalow.

“A 13-year-old boy was in the bedroom, sitting at a computer. He became trapped underneath the car for at least an hour and had to be freed by firefighters.”

Police are appealing for witnesses to the accident.

Kearan Gibbs

July 25, 2011

A young boy, who was born with no hands, has his sights set on playing international cricket.

 Kearan Gibbs, 11, is proving to be a talented spin bowler and batsman despite having no arms from the elbow down.

His ambition is to join England’s Disability XI in the next few years.

“I grip it in different ways then it spins,” says Kearan, from Redditch.

“Sometimes I put a fast one on then it straightens. It causes problems for the batsman, he can appeal for LBW, sometimes you can inside edge it and it goes into the slips.”

“He just sort of wedges the ball in the right place,” says Mike Harris, from Astwood Bank Cricket Club.

“He pushes it into his flesh, he has a tiny thumb-like bit of flesh which gives him grip then he throws his arm over, and pulls the ‘thumb’ away to release it. He has no fingers to direct it. To aim is extremely difficult. I don’t know how he does it.

“When he’s batting it’s just as remarkable, he can play a proper shot and compete with the other lads.”

Kearan, who admires England batsmen Ian Bell and Jonathan Trott, has been playing alongside able-bodied players in his school cricket team.

He got his first taste for the game five years ago on a family holiday. Since then he’s been keeping his mum busy.

“He’s always playing cricket in the house,” says Carrie, 29.

“My Lord, I’ve had balls hit me in the back of the head, pictures broken, he’s always got a cricket ball or bat in his hand. At his local club they thought he had a real knack and contacted the ECB, who came and looked at him and said he needed tweeking.

“He’s been told to keep his passport up to date as he might be touring internationally by the time he’s 14”.

A spokesperson for the England & Wales Cricket Board said: “We’re very keen to promote cricket for people with disabilities. There are more opportunities now than ever before for disabled cricketers to play the game right up to international level.”

Kearan, who has had nets installed at his home thanks to the charity Well Child practices every day.

The keen sportsman says if he doesn’t achieve his dream of playing international cricket – there’s always golf.

Government Committee To Publish Report On ATOS

July 24, 2011

People who are fit and healthy are unlikely to have heard of the company Atos, but anyone who has had to apply for sickness benefits may find that the name triggers (in the words of one MP) a sense of “fear and loathing”.

Responsible for carrying out the government’s drive to assess everyone claiming incapacity benefit, to decide whether they may actually be well enough to work, Atos staff are now testing around 11,000 benefit claimants a week, to determine how ill they really are and whether they are eligible for benefit payments.

Since the last government launched a campaign to cut the number of sickness benefits claimants, the process has been controversial, with charities and politicians warning that vulnerable people have wrongly had vital payments removed.

On Tuesday a select committee will publish a detailed and critical report on the way the Department for Work and Pensions policy has been implemented, looking in part at the way the Atos has carried out its contract to assess claimants. The Work and Pensions committee launched its investigation this year in response to the many complaints about the testing process.

More than 400,000 appeals have been lodged against decisions not to grant the benefit since it was launched in October 2008 and 39% are successful. The tribunals service has been forced to double the number of staff handling the appeals, to accommodate the huge volume of complaints; the cost of tribunals is estimated at well over £30m a year.

Atos, a Paris-based IT company, is being paid £100m a year to carry out the work capability assessments (WCAs), allowing the government to phase out incapacity benefit and replace it with the employment and support allowance (ESA). The record of Atos Healthcare (a division of Atos) over the initial period of the policy’s roll-out has already been much criticised by disability charities.

There are two main areas of concern: unease about the government policy of retesting people’s fitness for work, and alarm about practical hitches in the testing process delivered by Atos. Kate Green, a Labour MP who sits on the committee, said that while she was broadly supportive of the policy to help more people back into work, “the delivery has been absolutely disastrous”.

Concern has been voiced more widely, beyond the select committee, over the accuracy of the tests, the high numbers of successful appeals against the medical assessments, the facilities provided by Atos and the treatment of claimants by Atos staff.

For the past six months, Atos has been the focus of noisy protests by disability campaigners who have staged meetings outside its London headquarters, organised sit-ins at the medical assessment centres and sent protesters to picket Atos recruitment fairs. Protest banners declare “Atos doesn’t give a toss” and “Atos Kills” (a reference to reports, highlighted by leading mental health charities of people taking their own lives as a result of changes to their benefits). Those words have been painted on a wall near the company’s London headquarters.

During the test, benefit claimants are interviewed by Atos staff (a mix of doctors and nurses) for between 20 minutes and two hours. Staff engage claimants in an often very relaxed conversation, gathering information about the medical problems, and calculating how capable the claimant is of performing simple tasks; a computer programme offers prompts to ensure that all the relevant material is inputted.

Staff can capture information in a sideways manner – the question: “Do you shop and cook for yourself?” may be used as an indication of a claimant’s mobility and competence. Atos staff award claimants between zero and 15 points (with 15 points indicating that they are too unwell to work), and send their reports to the jobcentre, where benefits officials make a final decision.

Charities have warned that glitches in the system have meant that many seriously ill people have been judged fit for work. A third have appealed, with 39% of decisions overturned by tribunals. The tribunals service spent an estimated £22.15m on processing these appeals between May and September last year. The tribunals service has had to double its capacity in the social security section to deal with the large number of appeals, recruiting an extra 170 additional paid medical panel members.

The government accepts that the system has not run smoothly, and set up a review last year, headed by Professor Malcolm Harrington. His initial recommendations have been implemented by Atos. The DWP and Atos now expect the test to run much more smoothly. However, Harrington’s review has not yet addressed all the outstanding issues and will make further recommendations later this year.

During the Work and Pensions select committee hearings earlier this summer, MPs asked if Atos was penalised financially for inaccuracy. The company said it was paid per assessment, with no sanction if the decision was overturned on appeal.

Anne Begg, Labour chair of the committee, responded: “That adds to the suspicion that you are a private company, you are driven by a profit motive, and the incentive is to get the assessments done, but not necessarily to get the assessments right.”

Neil Coyle, director of Disability Alliance, said the government was paying the company to do the test, and was then footing the bill for reviewing flawed assessments. “It’s like paying for a childminder to babysit, and then going home three times in an evening to make sure they are doing their job,” he said.

A DWP spokesman said that if a decision were overturned, it did “not necessarily mean the original decision was incorrect”, because new evidence was often produced, or “the tribunal weighs the original evidence differently”.

MPs of all parties and from all parts of the country have found that the work capability assessment is a constant feature in their constituency mail bag.

Labour MP Tom Greatrex was alerted to the issue last year when a constituent reported difficulties getting through to an Atos helpline. Greatrex’s office called the number 135 times before getting through. Although the phone service has subsequently improved, he said the “experience of both my constituents and my own office of the customer service provided by Atos has been entirely negative”.

He too is concerned by the high levels of appeals, particularly now the system is no longer just testing new claimants, but has started retesting all 1.5 million incapacity benefit claimants to see whether they are eligible for the new benefit, ESA. “The acceleration of the assessment process will mean that we end up with more and more mistakes being made. If that many people are winning their appeals, then it is grossly inefficient, apart from anything else,” he said.

A lot of his constituents felt that they were “being branded as skivers” and “demonised by the system”, he said. “People have to have confidence that this is about helping them and not punishing them. I am not satisfied that the way in which Atos are doing what they are doing gives people that confidence; they have a responsibility to get it right. There are significant flaws in that process.”

The computer-led method by which Atos assessors work out how many points to award each claimant has also caused frustration, Begg said. “One of the big fears, and it was a common theme through all the evidence we got, was the mechanistic nature, the computer-based nature. I think a lot of your clients feel they are in the Little Britain sketch, where it says, ‘The computer says no,'” she told Atos staff at the hearing.

The Conservative MP Simon Hart, was warned by Citizens Advice staff in Carmarthen that the test was causing many complaints. In a series of parliamentary questions, he established that 29,000 claimants who originally scored zero in the test were later granted the benefit on appeal.

“It seems that some people are not failing by a couple of points. They are failing completely and then going to tribunal and then passing completely. If it were missing by narrow margin, you could understand that… there could always be a margin of error, but for some poor people the system is not working,” he said. “The policy is a sound one, but it has to be fair and there does seem to be a group for whom it is obviously not fair.”

MPs also raised concerns about the numbers of assessment centres that were not well equipped to receive people with disabilities (because, for example, they were on the first floor). Simon Gillespie, chief executive of the MS Society, said many people had “expressed concerns that the assessment centres themselves weren’t accessible”, among other complaints. “People with MS have told us they felt their assessor often appeared dismissive, and underestimated the impact of their condition or didn’t actually understand their condition at all,” he wrote in an email.

Given the high level of concern expressed about Atos’s current record, MPs wondered how the company was going to manage to deliver the “substantial savings” it promised when its contract was recently extended to 2015. Atos officials told MPs they would do that by “making the process more efficient”.

Glenda Jackson, Labour, said she struggled to see how the company could improve its performance, as promised, and simultaneously cut costs. “How will it be possible with a reduced budget to improve and expand training?” she asked.

The Lib Dem MP Stephen Lloyd, asked Atos staff how they planned to improve their reputation. “It is not [an] exaggeration that, for x number of people in the UK who are currently going through this process, Atos is feared or loathed in equal terms.”

Tom Pollard, policy officer with the mental health charity Mind, said it was often hard for charities to pass on their concerns to Atos. “It often feels like we are kept at arms length from Atos so they are not answerable as much as the DWP is,” he said. Officials tended to respond that the problems highlighted by charities were “one-offs or isolated incidents” and this evidence tended to get “passed off as if they are the exception to the rule”, he said.

“Often our experience suggests that the assessment is almost designed to ensure that it is catching out those people that might overplay things… to catch out scroungers. We often hear about people being asked slightly opaque questions… ‘Do you watch Eastenders? ‘ And staff will extrapolate from that, that person will be able to sit repeatedly and reliably for 30 minutes. That’s not quite straight from our point of view. It would be better to have an open conversation, where you don’t need to cloak the questions,” he said. “We don’t believe that people overplay their symptoms or conditions; that doesn’t line up with our experiences of the situation; they’re more likely to underplay it if anything.”

Some charities are also uneasy at the prospect of Atos being given further contracts for a new set of medical assessments that the government is to introduce in 2013 to test eligibility for the new personal independence payments (PIP), to replace disability living allowance. Atos has already carried out some trial assessments for this test, with G4S.

Richard Hawkes, chief executive of Scope, said: “They are responsible for the WCA and that doesn’t work and so we would have great concerns if they became responsible for the PIP assessment as well.”

The public’s anxieties about Atos have been largely aired in blogs. Some disability campaigners have warned that by focusing anger on Atos, which is merely the company contracted to carry out a government policy, protesters are missing the point.

When Atos (which is also responsible for IT at the Olympics) appointed athlete Steve Cram to be its UK ambassador for the 2012 Olympic and Paralympic Games, protesters turned their frustration on him, with a burst of angry online campaigning. The Disabled People Against Cuts group, wrote to him asking him “politely to reconsider his position”, but say they have yet to receive a reply. Cram’s agent said the athlete had not received a copy of the letter, although she had seen it online, and referred calls to the Atos press office.

The company has recently taken legal action requesting closure of at least one website, which had invited people to post descriptions of their experiences of the medical assessment. Phil Lockwood who created a website, afteratos.org, earlier this year, was contacted by the company’s lawyers advising him to take the site down.

An Atos spokesman said: “Atos Healthcare is focused on quality to ensure high standards are maintained. Customer satisfaction ratings for Atos Healthcare Professionals regularly exceed 90%.”

In an emailed factsheet, the company says it has introduced improvements in partnership with the DWP, including “improved consistency and quality of medical assessment and reports”.

A DWP spokesman said the government was continuously improving the test, adding: “Professor Harrington is now undertaking a second independent review of the WCA, which will be published before the end of the year. As part of this he has launched a call for evidence and we would encourage people to respond.”

Questions and answers: taking the test

A Guardian reader agreed to be accompanied to his recent work capability assessment. He has epilepsy and Asperger’s syndrome and has been suffering from anxiety. He lost his job last year because of his ill health.

He was assessed by a nurse, who greeted him kindly and tried to reassure him about the process. The assessment started with an informal chat, and she asked how he had made his way to the assessment centre, clarifying whether it had taken more than half an hour. This was not just small talk, because the answers help build up a picture of potential fitness for work. The nurse asked questions about his diagnosis, but was also interested in his daily life.

“Do you go shopping?” “What happens if you have a fit when you’re shopping?” “How long do you need to recover from it?”

“Do you do the cleaning at home?” she asked. “Do you do the cooking?” ” Do you worry that you might leave the cooker on?” “Do you have pets?” “Do you have friends?” “Do you meet friends in cafes?” “Do you get the newspapers every day?”

Ability to cook and care for pets shows evidence of general competence, but claimants often find this roundabout form of evidence-building confusing.

She typed answers into the computer as she spoke, inputting his replies into the LiMA (logic integrated medical assessment) computer programme that processes the responses and helps translate the replies into a score between 0 and 15, with 15 being the point at which sickness benefit is recommended. She apologised for the noise of the keyboard being tapped, and for the fact that she had to take contemporaneous notes. After criticism about assessors looking at the computer rather than at the claimant, staff have been told to improve their eye contact.

After a while, the tone of the interview became much more business-like, the sympathetic murmurings stopped and the questions became more rapid. “Do you cry?” she asked, trying to gauge the seriousness of his anxiety. “Do you feel that life is not worth living?” “Do you feel that you can’t on?” The replies (no) were typed in swiftly.

Two weeks later, the claimant was informed two weeks later that he was temporarily eligible for employment and support allowance, but would need to take part in “work-related activity” sessions.

Surrey Hospital Suspends Epilepsy Doctor

July 22, 2011

The Royal Surrey County Hospital has suspended a doctor after concerns were raised about how children with epilepsy were being treated.

The hospital has informed parents of 569 children with epilepsy there will be a review of Dr Nicholas Driver’s methods going back nine years.

The hospital said none of the children had died as a result of the treatment.

But medical director Christopher Tibbs did not rule out that some children may have come to harm.

‘Distressing news’

Dr Tibbs said the hospital received a letter from a paediatric neurologist in February expressing concern about Dr Driver’s methods.

Dr Driver, described by Dr Tibbs as a “hard-working and diligent doctor”, was suspended from working with children with epilepsy the next day.

Two weeks later, he was suspended from all hospital duties, Dr Tibbs said.

Dr Tibbs urged parents not to change their children’s medication without seeking expert advice.

He refused to go into specifics but said the concerns were about “the totality of the management of the patient”.

A letter sent to parents seen by BBC Surrey says independent experts will look back at Dr Driver’s cases since 2002.

It says: “We realise this might be distressing news and would like to apologise for any anxiety caused.”

A spokeswoman for the Epilepsy Society said it would be inappropriate to comment on the case.

She added: “However, if your child is currently receiving treatment for epilepsy, it is important that you do not alter or stop their anti-epileptic medication.”

A dedicated helpline – 01483 408379 – has been set up by the hospital for anyone directly affected by the issue.

Children’s Respite Care Centre Closes

July 22, 2011

A Berkshire respite care unit for children is to close 10 months after opening, despite parents’ protests.

The unit at Manor Green special school closes on Friday and the Royal Borough of Windsor and Maidenhead has said it does not know when it will reopen.

The centre provides overnight care for children with severe learning disabilities.

The local authority said the decision was due to reductions in central government respite care funding.

‘Very upset’

Carol Streeter, whose daughter Rebecca uses the unit, said attending the 24-bed respite centre had taught her daughter essential life skills.

She said: “I am very upset, because there are some people I know that are up over a dozen times a night every night, seven nights a week, so having that night in which you can sleep brings some normality to life.”

Windsor and Maidenhead Council said that neighbouring authority Buckinghamshire County Council had decided to stop sending children for respite care at the Maidenhead centre and there was not sufficient demand to keep the unit open.

However, Buckinghamshire Council Council said it was no longer using the service because the school raised the price from £40 per night to £350 per night in January.

Director of children’s’ services, Cliff Turner, said: “We put our prices up because we didn’t think it was right to subsidise what we were offering to our neighbours with our own council tax payers’ money, because government grants to local authorities have been squeezed and because we have more freedom about how we spend those grants.”

The centre opened as part of a £26m specialist school which replaced Holyport Manor last September.

Mr Turner said the council would close the centre and review its future purpose.

In a statement, the council said: “Everyone concerned wants to make sure that the excellent facilities are used to best effect and that the provision reopens as soon as possible.”

Scope Are Looking For An Accountant

July 21, 2011

I thought some readers might be, or know someone who is, interested in this:

http://twitter.com/#!/scope/status/94074484222459904

Radio 1 DJ Sara Cox Forced To Apologise To Deaf Followers Over Subtitle Tweets

July 21, 2011

RADIO 1 DJ Sara Cox has been forced to apologise for moaning about film subtitles for the deaf.

The ex-ladette went to see comedy Bridesmaids with her boyfriend and was annoyed to find it had captions for the hard of hearing.

Sara, 36, fired off rants on Twitter – and even branded deaf people who were offended by them “gobsh***s”.

The mum of three tweeted: “How daft is this? I’m at flicks & bridesmaids is gonna have subtitles. I morphed into my dad & asked if we got any money off. If I was wearing specs I could’ve put a strip of black gaffer tape across the bottom to block them out.”

Followers called her “disgusting”, saying she should check listings before going to the cinema. But Cox hit back: “For all you gobsh***s we checked online & it didn’t mention it.”

She later deleted the offending tweet, adding: “Sorry my random musings might sometimes not be thought thru.”

But one of her deaf online followers wrote: “Get some respect and realise how lucky you are to HEAR!“

Another said: “I find it very difficult to find subtitled films at cinemas. We’re not second-rate citizens.”

Brain Damaged Woman Can Smile, Carer Tells Court Of Protection

July 21, 2011

A woman with profound brain damage, whose family want her to be allowed to die, sometimes displays a “bit of a smile” when teased about men, the High Court was told by a carer yesterday.

The 51-year-old, who is “minimally conscious”, also made a different sound if carers joked about a man being good looking, Mr Justice Baker heard. Relatives of the woman, who cannot be named for legal reasons, want the Court of Protection to order an end to her artificial feeding.

A lawyer appointed to represent her interests opposes the move, saying she “has signs of awareness”. The case continues.

South Asian Children Of Cousin Marriages At Higher Risk Of ‘Bubble Baby’ Syndrome

July 21, 2011

A leading doctor who treats children born without an immune system has revealed a disproportionate number of his patients are Asian.

Professor Andrew Cant says that 35% of children he treats are British Asian.

In most cases the parents are first cousins who have married each other.

Severe Combined Immune Deficiency Syndrome is a rare inherited genetic disorder. Around one in 300,000 children is born with the condition, often known as “bubble baby syndrome”.

Professor Cant, director of the Children’s Bone Marrow Transplant Unit at the Great North Children’s Hospital in Newcastle, says that South Asians would normally be expected to account for 5% of patients.

Early testing

Khadija Ibrahim, aged 7, was born with a defective immune system. Her mother Samina suspected there was a problem soon after her daughter was born.

“When she was three to four months old she started catching infections. So every time we went out to the park or anywhere she’d always come back with an infection and she’d have to go onto antibiotics, so we were in and out of hospital every other week,” she said.

Subsequent tests revealed Khadija’s immune system was not functioning properly.

Professor Cant explains the implications of immune deficiency.

“Severe defects mean that even a simple germ, that in healthy people causes nothing more than a cold, will cause their death within a year of being born,” he said.

A bone marrow transplant was Khadija’s only chance of survival.

This was carried out at Professor Cant’s unit, one of only two centres in the UK and Ireland that treat “bubble babies”.

Khadija has since made a full recovery. During a trip to London with her family she talks excitedly about the tourist attractions she hopes to visit.

It is hard to believe this energetic, effervescent young girl was once so sick that a kiss from her mother had the potential to kill her.

Other children are not so fortunate. Mohammed Mahboub knows all too well the pain of losing a young child to this illness.

He and his wife witnessed their five-year-old daughter struggle through the condition after undergoing an unsuccessful bone marrow transplant.

“It was a battle for five years, every aspect of this illness…you can’t say there was one day where it was easy going, every single day was a battle,” he said.

Cousin marriages

Every year between 30 to 40 children undergo bone marrow transplants at Professor Cant’s unit, of which 35% of patients are Asian.

Professor Cant says that in almost all cases, the children are the product of first cousin marriages.

“If you marry your cousin, you and your husband or wife will have a copy of the same defective gene that you’ve inherited from your common relative, usually a grandparent or a great grandparent.

“That means that your children have a one in four risk of picking up two copies of the defective gene and so having a part of their immune system missing,” he explained.

Professor Cant hopes that increased awareness will encourage couples in consanguineous marriages to be aware of the risks and seek help earlier if they suspect a problem.

He believes this would opens up the possibility in many cases of ante-natal diagnosis or post-natal diagnosis.

The earlier the diagnosis the higher the chances there are of a child surviving.

“Luckily we’ve seen Khadija grow and she’s done really well. There is always hope,” said Samina.

You can hear more on Asian Network Reports on the BBC Asian Network at 1230 BST and 1800 BST Monday to Friday and after on BBC iPlayer

Able Life: Going GaGa Over Wheelchair Prop

July 20, 2011

Tonight on Able Life, George Johnson and I are going to be discussing Lady GaGa’s ‘mermaid in a wheelchair’ stage routine. As usual, I have a sneak preview for you, readers.

Four Care Homes To Close In Haringey

July 20, 2011

Four care homes are to close in north London, affecting scores of elderly and disabled people.

Haringey Council plans to shut three homes for the elderly and a residential and respite home for adults with learning disabilities.

Broadwater Lodge, Cranwood, The Red House centre and the respite care home in Whitehall Street will shut by 2013.

The council said it was “forced” to close the care homes to achieve its £41m savings target by March 2012.

The council said the decision to close the homes by March 2013 was geared towards providing “less in-house services” and becoming a “commissioning organisation”.

In February, the Labour-run council approved £84m cuts from a total budget of £273m over the next three years.

‘Unprecedented cuts’

Dilek Dogus, cabinet member for health and adult services, said: “We very much regret that we have been forced to take these decisions as a result of unprecedented government imposed cuts – which mean we have to make £41m in savings across the council during the present financial year.

“We carried out extensive consultations with service users and their families before arriving at the decisions taken by cabinet – and would like to give an assurance that we are working hard with other providers, notably in the voluntary and independent sectors, to ensure that vulnerable adults continue to receive the care they require.”

The council said it could use nine independent residential care homes in the borough, which accommodate 231 people. In addition it would look at other facilities in neighbouring boroughs.

Haringey said it currently commissions about 75% of all elderly residential care to the private sector.

For people with learning disabilities, there are 28 care homes with 139 beds in addition to council-owned Linden House which has six beds.

About 90% of the care is commissioned to the independent sector.

Partner Of Brain Damaged Woman Pleads With Court Of Protection For Right To End Her Life

July 20, 2011

A man twice broke down weeping in court yesterday as he pleaded for the woman with whom he had shared his life to be allowed to die. The couple met in 1982, when he was 24 and she was 22, but she is now in hospital with brain damage that has left her incapable of speech or movement.

His plea for care home staff to stop feeding her by tube was supported by the woman’s older sister, who also wept as she gave evidence.

They claimed that if the woman known as M – who cannot be identified for legal reasons – were able to express a wish, she would prefer death to being permanently dependent.

“It’s not about us at all,” her former partner, identified as S, said. “We can only speak up for her, nothing more. We are her voice. We have no ulterior motive. We just know who she was and her opinions.”

Her older sister, known as B, pleaded that it was cruel to keep her alive. “I know in my heart of hearts that she would not want to live like that,” B told the court. “She cannot enjoy a drink, a cup of tea or anything. She has got no pleasures in life. Just a daily routine of being taken out of bed, put in a chair and put back in bed. Shower, doubly incontinent. It is just awful. It’s not life. It’s existence. And I know she would not want that.”

Staff at her care home say that they have detected slight signs that M is conscious of her surroundings. This includes reacting to other people. She also “moved her hand purposefully and in rhythm” when “Tiger Feet”, a 1970s hit by Mud, was played. But her former partner and her sister argued that there was no prospect of her returning to being the person she had once been.

The case, being heard in the High Court, is believed to be the first time a court has been asked to rule on whether someone who is not in a persistent vegetative state should have their life support withdrawn.

M, who worked as a hairdresser, was due to go on holiday with her partner on 18 February 2003. That morning S was surprised that she had overslept. He woke her, but she was incoherent. She had a condition called viral encephalitis, which led to profound brain damage. After she had been in a coma for several weeks, she was diagnosed as being in a persistent vegetative state (PVS). Later, the diagnosis was changed to minimally conscious state, which is just above PVS. Her medical condition is now stable, and at the age of 51, she has a life expectancy of 10 years.

Caroline Harry Thomas, representing the Official Solicitor, has claimed that switching off the life support system of someone who is minimally conscious and medically stable would be illegal.

During the hearing, which will last for several days, the court will hear from members of staff at the care home and other expert witnesses.

Lancashire County Council Faces High Court Case Over Care Cuts

July 20, 2011

I hope the women win.

Two disabled women are mounting a legal challenge over Lancashire County Council’s decision to cut care services.

The women, who do not want to be named, are being represented by Disability Equality North West (DENW) at the High Court in Manchester later.

Savings of £179m need to be made by the authority over three years with £25m being cut from home care services.

The judicial review will decide whether the cuts decision was made legally.

The DENW’s solicitors are questioning the council’s public consultation process, arguing the cuts were set before the consultation came to an end.

It has also said the council has failed to comply with disability discrimination law.

The two women have said they need assistance in their own homes to help them get out of bed and carry out daily tasks like getting dressed and going to the shops.

The Conservative-run county council is denying the allegations.

It said it was trying to protect front line services as far as possible, but that it needed to raise charges for care services and that people currently receiving the support will be assessed.

Oscar Pistorius Moves Step Closer To Olympic Dream

July 20, 2011

Oscar Pistorius has run the 400m qualifying time for both August’s World Championships and the 2012 Olympics.

The South African double amputee, who runs on carbon fibre legs, clocked 45.07 seconds in Italy.

Pistorius, known as ‘Blade Runner’, was 0.18 seconds inside the ‘A standard’ time and could now be selected by South Africa for the London Olympics.

The 24-year-old was cleared to compete against able-bodied athletes in 2008 after a lengthy legal battle.

Pistorius’s previous personal best of 45.61 seconds was inside the ‘B standard’ set by the International Athletics Federation (IAAF) for the event but meant he was unlikely to make the South African team.

Every national federation can select three athletes for the World Championships or Olympics, providing they meet the A standard, with only one allowed if they only meet the B standard.

Before his run in Italy, Pistorius was only the fourth fastest South African – behind LJ van Zyl, Ofentse Mogawane and Lebogang Moeng – over the distance this year.

A time of 46.65 in gusty conditions in Padua on Sunday had left Pistorius with just one more chance to qualify for the World Championships and his emphatic victory in Lignano saw him leapfrog Mogawane and Moeng.

His winning time on Tuesday would have been good enough to earn him fifth place in the 2008 Olympic final in Beijing.

Pistorius is only in contention to compete at the highest level of the sport after the Court of Arbitration for Sport (Cas) overturned an IAAF ruling that his prosthetic limbs gave him an unfair advantage in May 2008.

Five months earlier a study commissioned by the IAAF, which compared Pistorius with six able-bodied athletes capable of similar performance, had claimed that Pistorious’s blades required him to use 25% less energy than his rivals to run at the same speed.

Pistorius had argued that he was running at a disadvantage, with less blood in his body and no calf muscles.

Cas concluded that the evidence was inconclusive and cleared him to run.

A congenital condition meant Pistorius was born without fibulae – lower leg bones – and led to the decision to amputate both legs below the knee when he was 11 months old.

He preferred rugby union, water polo and tennis as a schoolboy and only took up running seriously in 2004 after being prescribed it as part of his rehabilitation from a rugby injury.

It proved a successful decision with Pistorius having won four gold medals at the Paralympics and holding world records for disabled athletes at the 100m, 200m and 400m.

Sophie Clarke

July 19, 2011

A girl who was born with severe brain damage has been awarded £5m damages from a health board for her care.

Sophie Clarke’s lawyers said she had suffered a catalogue of mistakes which led to her birth being delayed at Princess of Wales Hospital, Bridgend.

Sophie, 12, from Pontyclun, Rhondda Cynon Taf, needs 24-hour care, is immobile and is fed through a tube.

Abertawe Bro Morgannwg University Health Board said it had learnt from failures at the 1998 birth.

Sophie’s mother, Lynne Clarke, said: “It has been an incredibly hard few years for the family, but to know that our daughter will always be looked after is a huge relief for us all.

“While no amount of money will repair the damage done, we now have a chance to move on with our lives and focus all of our energies on Sophie, ensuring that she gets as much out of life as possible.”

The family’s lawyers, Irwin Mitchell, said Sophie’s cerebral palsy was caused by oxygen starvation in the womb.

They said she had a gross abnormality of her heart rate which was not recognised despite it showing on monitoring equipment.

She should have been delivered earlier, but staff did not intervene and the birth was allowed to progress naturally, they added.

Abertawe Bro Morgannwg University Health Board said it wanted to “reiterate our sincere apologies to Sophie and her family for the failures in 1998”.

A spokesperson said: “The safety of our patients and the quality of the service we provide is very important.

“Since 1998 systems, equipment, training and ways of working have significantly changed. There are also robust audit arrangements in place to minimise the risk of such events recurring.

“While no amount of money can restore Sophie’s health, we hope it will at least help to provide for her future care and support.”

Therapy services

Suzanne Munroe, of Irwin Mitchell, said the funds secured at the approval hearing in Cardiff would be used to ensure Sophie had access to the care she would need for the rest of her life.

“The extent and complexity of the problems faced by Sophie mean the funding which has been secured will ensure she can access 24-hour care, and rehabilitation and therapy services that will prove invaluable throughout her day-to-day life,” she said.

“It also means that her family can guarantee she has accommodation adapted to meet her everyday needs.

“However, while the settlement is welcome news, it is important that the compensation Sophie will now receive from the trust is not seen as a lottery win.”

Let Brain Damaged Woman Die, Sister Tells Court Of Protection

July 19, 2011

The sister of a severely brain-damaged woman has told a judge that she would not have wanted to live a life totally dependent on others.

The Court of Protection is hearing an application that feeding tubes be withdrawn from the 51-year-old woman known only as M.

M, who is lives in a care home in the north of England, suffered brain damage in 2003 after a viral infection.

She is in what is known as a minimally conscious state.

The court heard that M receives “exceptional and dedicated” treatment at the care home.

The family lawyer said they were here because of the clearly and consistently expressed views of M, who was not religious, that she would never want to live a life dependent on others, even if she retained her mental faculties.

The family are asking a judge at the Court of Protection to allow M to die through the withdrawal of artificial nutrition and hydration.

The official solicitor, who opposes the application, said he was satisfied that M’s mother, sister and partner love her a great deal and they genuinely believe they are acting in her best interests.

M’s sister wept as she told the court that she missed her very much. She described how, prior to her illness, M had been a very active woman.

She said M had been fiercely independent.

“I know in my heart she would not want to live like that” she said.

“What can she possibly get out of life? She can’t move, speak and she’s fed through a tube. She can’t even enjoy a cup of tea.

“She has no pleasure in life. There’s no dignity in it. It’s not a life, it’s an existence and I know she would not want that.”

When told that care staff think that M can communicate by opening her eyes she said it was not anything meaningful.

The hearing is being seen as a test case.

In 1993, the House of Lords ruled that doctors need not keep someone alive if it was viewed that it was of no benefit to the patient. That case involved Tony Bland, a survivor of the Hillsborough football disaster, who was in a persistent vegetative state or PVS.

Patients in PVS have no awareness or consciousness of their surroundings.

But the key difference here is that M is not in a vegetative state but is minimally conscious. Although she is unable to talk, it will be for the court to establish whether she is able to communicate in any meaningful way.

A crucial point for the family is that they believe M is suffering and experiences pain.

The case continues.

Apprentice Tom Has Dyslexia

July 19, 2011

Seems Lord Sugar is sweeter than he looks! He’s gone into business with a DisAbled man. I’m very pleased to read this post at the BBC Ouch Blog. What I don’t know, since I don’t watch The Apprentice, is- is Tom the first DisAbled winner?

Job Vacancy For Performing Arts Teacher At Scope College

July 19, 2011

 

http://twitter.com/#!/scope/status/93264570684149760

Court Of Protection Must Decide Whether To Let Brain Damaged Woman Die

July 19, 2011

Who decides what is in the best interests of patients who are unable to speak for themselves?

In a landmark legal case which begins on Tuesday, a judge at the Court of Protection in London will be asked to decide whether a severely brain-damaged woman should be allowed to die.

There are legal restrictions on the reporting of the case. The woman, who is 53, is known only as M and is cared for somewhere in the north of England. She was severely brain-damaged in 2003 and is in what is known as a “minimally conscious state”.

In a preliminary ruling on the case, Mr Justice Baker said the tragedy had had a “devastating impact”, not only on M, but on her family including her mother, sister and partner.

Those family members had “come to the clear view that M would not wish to continue living in her current state and that it is not in her interests to do so.”

“Showed awareness”

A crucial point for the family is that they believe M is suffering and experiences pain. Lawyers for the family are seeking a declaration that artificial nutrition and hydration can be withdrawn.

The case is likely to last two weeks, during which the judge will consider evidence from a number of medical and legal experts.

But the Official Solicitor, a lawyer appointed to represent M, strongly opposes the application. He will argue M could respond to touch, “showed awareness” and may be able to communicate using a switch.

Tony Bland

Mr Justice Baker described the case as “unique” raising “very important issues of principle”.

In 1993, the House of Lords ruled that doctors need not keep someone alive if it was viewed that it was of no benefit to the patient. That case involved Tony Bland, a survivor of the Hillsborough football disaster, who was in a persistent vegetative state or PVS.

Patients in PVS have no awareness or consciousness of their surroundings.

I covered the Tony Bland case and remember a key argument in court was whether artificial nutrition and hydration – feeding tubes – could be regarded as medical treatment.

It was ruled they could, and the judges found that “invasive” medical treatment that conferred no benefit could be withdrawn.

Life support

Since 1993 a total of 43 PVS patients have died after a judge ordered that treatment could be withdrawn – each case being heard individually. On each occasion the patient’s interests are represented by the Official Solicitor.

The key difference here is that M is not in a vegetative state but is minimally conscious. Although she is unable to talk, it will be for the court to establish whether she is able to communicate in any meaningful way.

There are thousands of patients around the country in a vegetative or minimally conscious state. They need round the clock attention in nursing and care homes and hospitals. I have spent a lot of time talking to families and carers and their dedication and commitment gets very little public recognition.

Doctors have always been able to end life in certain circumstances – such as switching off a life support machine. But this case will re-examine the boundaries of when it is deemed in someone’s “best interests” to live or die, and who should make that decision.

Parents Fear Care Home Closure

July 19, 2011

Parents and relatives of users of a care home which may close spoke to the Guardian about what its closure would mean for them.

Passive Smoke Nearly Doubles Hearing Loss Risk In Teens

July 19, 2011

Passive smoking nearly doubles a teenager’s risk of hearing loss, research reveals.

Investigators say the findings, from a study of over 1,500 US teens aged 12 to 19, suggest that secondhand tobacco smoke directly damages young ears.

And the greater the exposure the greater the damage.

Often it was enough to impair a teen’s ability to understand speech, Archives of Otolaryngol – Head & Neck Surgery reports.

It is still unclear how much exposure could be harmful and when the damage might occur.

Experts already know that smoke increases the risk of middle ear infections.

And they believe it may also harm the delicate blood supply to the ear causing “subtle yet serious” changes.

Continue reading the main story

“Start Quote

Further research is needed to demonstrate a causal link”

Dr Ralph Holme of the charity Action on Hearing Loss

For these reasons, as well as other smoke-related health risks, they say the best advice is to avoid any exposure to tobacco smoke as far as is feasible.

Dr Ralph Holme of the charity Action on Hearing Loss, formerly RNID, said: “We already knew from our own research that regular active smoking is a significant risk factor leading to hearing loss.

“This research strongly suggests that children exposed to tobacco smoke are at increased risk of hearing loss.

“Further research is needed to demonstrate a causal link, but in the meantime to protect your child’s hearing, and health, it would be advisable to avoid smoking around them.”

Avoidable

Lead researcher Professor Anil Lalwani, from the New York University School of Medicine, said: “We need to evaluate how we deal with smoking in public places and at home, as well as how often and when we screen children for hearing loss.”

In the study, around 40% of the 800 teens who had been exposed to secondhand smoke had detectable hearing problems, compared to about 25% of the 750 teens who had not had this exposure.

Yet very few – less than a fifth – of the affected teenagers were aware that they had a problem with their hearing. This is because mild hearing loss is not necessarily noticeable to the individual.

But hearing tests revealed that they struggled with high and low frequency sounds.

Co-researcher Dr Michael Weitzman said: “It’s the type of hearing loss that usually tends to occur as one gets older, or among children born with congenital deafness.”

He said this could make it difficult for children at school because they might find it hard to follow lessons and be wrongly labelled as “troublemakers”.

CQC Denies Ignoring Winterbourne View Whistleblower

July 19, 2011

Britain’s health and social care regulator yesterday defended itself against allegations that it ignored a whistle-blower who raised the alarm about the abuse of people with learning disabilities at the Winterbourne View home in Bristol, exposed by the BBC’s Panorama programme in May.

Publishing the findings of its inspection, the Care Quality Commission said Castlebeck, which ran Winterbourne View, had failed to protect the safety of patients or investigate allegations of abuse. It added that it was considering “further legal action” against its owners.

However, it said responsibility for acting on the whistle-blower’s warning lay with South Gloucester Safeguarding Children Board, which received the warning last October but did not meet to discuss the issue until the following February.

A spokesman for South Gloucestershire Council said the whistle-blower’s information was “limited and of a very different nature and scope to that provided by the Panorama programme”.

Bette Midler Tweets Lady GaGa About Mermaid In Wheelchair Stage Act

July 18, 2011

I feel a bit like a teenager again, following the lives, loves and arguments of female pop stars! MSN has an update on Lady GaGa’s appearance on stage in a wheelchair. As today’s teenagers would say- OMG!

Scope Are Looking For A Research Volunteer

July 18, 2011

 

http://twitter.com/#!/scope/status/92982216568737795

Should Care Be Provided Locally Rather Than In Institutions Like Winterbourne View?

July 18, 2011

This is the question raised in this article by Kim Foo at the Joe Public blog.

Winterbourne View Failed To Protect People, Finds CQC Report

July 18, 2011

A care watchdog has reported a “systemic failure to protect people” at a hospital where alleged abuse was secretly filmed by the BBC.

The Care Quality Commission (CQC) published its findings after an inspection of Winterbourne View near Bristol.

The review was ordered after BBC Panorama filmed patients being pinned down, slapped and taunted.

Police said they had arrested a 12th person in connection with the inquiry.

The Panorama programme was contacted by whistleblower Terry Bryan who alerted the BBC with his concerns about some staff.

‘Injuries to patients’

Mr Bryan, a senior nurse, acted after his concerns were not followed up by the home’s management or the CQC.

The CQC report on Winterbourne View found owners Castlebeck Care had failed to ensure residents living at the unit were adequately protected from risk, including the risks of unsafe practices by its own staff.

It said: “There was a systemic failure to protect people or to investigate allegations of abuse.

“The provider had failed in its legal duty to notify the Care Quality Commission of serious incidents including injuries to patients or occasions when they had gone missing.”

Inspectors also noted staff did not appear to understand the needs of the people in their care and said “some staff were too ready to use methods of restraint without considering alternatives”.

The latest person to be arrested is a 27-year-old man from the South Gloucestershire area.

Police said he had been arrested under the Mental Capacity Act and had been released on police bail.

Eleven other people, eight men and three women, who have already been arrested by police remain on police bail, pending further inquiries.

Winterbourne View closed down in June.

Stepping Hill Hospital Woman Tracey Arden, 44, Had MS

July 18, 2011

I’m very sad to read this.

One of three people reported to have died after what police suspect were multiple cases of tampering with medicine at a Greater Manchester hospital was confirmed yesterday to be a 44-year-old mother of two who had previously been responding well to treatment.

Multiple sclerosis sufferer Tracey Arden, of Heaviley, Stockport, died at Stepping Hill Hospital in Stockport on 7 July. Two male victims aged 71 and 84, who both had serious health problems, died last week.

Police investigating three deaths at the hospital after saline solution was deliberately contaminated are to interview 11 people who survived the effects of the tampered medication.

Ms Arden’s brother, Gary, said yesterday that his sister died two hours after her parents left her bedside believing she was responding well to treatment. “During the afternoon my mother and father had been to visit her, then they left her looking like she was recovering well,” Mr Arden said. “Colour was coming back into her cheeks and she was responding well to her treatment. They left, and then a relatively short while afterwards they received a call from the hospital that Tracey had taken a turn for the worse and they should come and see her. By the time my mother and father arrived she had just passed away.”

He described his sister, who was diagnosed with MS when she was 32 and had been in care ever since, as “an everyday, young, fun-loving, smiling, hard-working mother of two”. “Even through all of that illness she always had a smile and joke when I went to see her,” he said.

The family, who were told Ms Arden had died from an illness associated with her condition but related to infections with her lungs and chest, have had to postpone the funeral while tests are carried out on her body.

“I don’t think I am ever going to blame the NHS as an institution for what may or may not be the actions of a random person,” Mr Arden said. “At this point in time my hope is that the investigation takes its due course and we find Tracey was nothing to do with this.”

Security measures at the hospital have been stepped up to protect patients. But a source yesterday claimed security was “lax” before the incident due to redundancies made by Stockport NHS Foundation Trust, which runs the hospital. As a result, people had been known to walk through wards unchallenged, the insider alleged. The trust source said: “The nurses are so busy they were run off their feet and are running around ragged. If anyone has got in it’s due to all the staffing levels being cut. People are so busy that they cannot see everyone coming into the ward.”

However, Mark Hunter, MP for Cheadle, said there had not been previous concerns about security at Stepping Hill Hospital and that it was held in “almost universally high regard by the community it serves”. “This is obviously a very serious matter. I have to say I think the hospital has acted entirely responsibly, acted very promptly calling the police in as soon as it knew there was a problem,” he said. “And the really important thing now is that the police are allowed to conclude their investigations as a matter of some urgency to provide reassurance to the wider community.”

The alarm was raised last Tuesday after insulin was discovered in a batch of 36 saline ampoules in a hospital storeroom. A nurse had reported seeing a higher than normal number of patients with unexplained low blood sugar levels. Detectives believe the insulin was deliberately injected into saline containers used by at least two wards, but say the deaths remain unexplained as they await the results of post-mortems. “We are no longer treating the tampered medication as a sole contaminated batch because we cannot be sure that this was the only incident of its kind,” a police source said. “We will be interviewing all those who became ill from the contaminated saline to find out if they can shed any light on who is responsible.” A hospital spokesman said there were no redundancies before the incident.

Police Search For Owner Of Floating Wheelchair

July 17, 2011

The police and coastguards have been searching a harbour in Cornwall after a wheelchair was found floating in it.

The wheelchair was discovered in Penzance Harbour on Sunday morning.

The Penlee lifeboat was initially launched after Falmouth Coastguard said there was “uncertainty” about whether someone had fallen in.

But a review of CCTV footage found it was dumped on Saturday night. Police want to trace the owner or find out if anyone is missing a wheelchair.

Thirty Subaru Owners Surprise CP Boy Jake, 7

July 17, 2011

A group of car enthusiasts from across England have travelled to Cornwall to surprise a boy with Cerebral Palsy.

Thirty Subaru owners from as far afield as Oxford and the Peak District travelled to Newquay on Sunday.

They surprised Jake James, seven, who has Cerebral Palsy and diabetes and says the Subaru is his favourite car.

His mum, Diana James said: “It’s just mind blowing, we can’t thank all the people enough, it’s just been amazing and it’s just all been for Jake.”

The car enthusiasts made their way down to Newquay after a family friend suggested the idea and posted it on a Subaru forum.

As well as leaving his house to find the cars revving on the road, Jake also got driven around Newquay in a 30-car convoy.

Castlebeck Chairman Resigns

July 17, 2011

Forget Rebekah Brooks. Forget Paul Stephenson. There’s been a much more surprising resignation in the world of care homes. Any thoughts, readers?

The chairman of Castlebeck, the company behind Winterbourne View, the care home at the centre of the recent BBC Panorama abuse exposé, has resigned as the group braces itself for what it expects to be a highly critical report into care standards conducted by the Care Quality Commission and PricewaterhouseCoopers.

Paul Brosnan, the 35-year-old son of Denis Brosnan, one of Ireland’s richest men, will make way for Dick Stockford, a veteran healthcare consultant and troubleshooter who has worked with senior figures across the NHS including chief executive David Nicholson and Lord Darzi.

Castlebeck is owned by Denis Brosnan’s Jersey-based Lydian Capital, which is backed by fellow Irish tycoons JP McManus, John Magnier and Dermot Desmond.

Paul Brosnan, who has served as chairman of Castlebeck for almost three years, called in PwC to conduct a review of systems and controls at care homes after being presented with Panorama’s findings. The CQC also began its investigation in response the abuse secretly filmed by the BBC and broadcast in May.

Winterbourne View has closed since the programme and the firm, which operates 56 sites, has apologised. But last week four workers at Rose Villa, a rehabilitation centre in Bristol also run by Castlebeck, were suspended amid fresh allegations of misconduct.

Denis Brosnan owns Croom House stud in Limerick, where Paul grew up, and is chairman of Horse Racing Ireland. He made his fortune as the former boss of Irish food supplier Kerry Group and went on to lead Lydian Capital, whose backers are sometimes known as the Coolmore mafia because of their close business ties and their shared passion for horseracing. The Coolmore stud in Tipperary is owned by the Magnier family. Lydian investments included Global Radio, the firm behind Classic FM, Heart and LBC, and preschool nursery operator Casterbridge Care.

Stepping down from Castlebeck leaves Paul Brosnan, a former banker with Allied Irish Bank, with more time to concentrate on Casterbridge, a business he is credited with building up into 26 sites looking after almost 2,500 children. Castlebeck said: “Paul Brosnan has told the board that he believes the company needs a chairman with relevant health and social care experience at this time.”

Casterbridge attracted controversy after the 2007 death of two-year-old Rhiya Malin at its Eton Manor nursery in Chigwell, Essex. Last year it emerged Casterbridge had re-registered the nursery under a different company name.

Lawyers for Rhiya’s parents have claimed this effectively removed her death from records on Ofsted‘s website. The regulator has since said it would change the rules on how it treats such re-registering. Casterbridge said it was an unintended result of a corporate consolidation. The super-rich tycoons behind Lydian are also big investors in several other care providers in the UK. Another Jersey investment vehicle called Grove Limited — again led by Denis Brosnan — also counts Desmond, McManus and Magnier among its investors. This business controls the Barchester Healthcare empire of more than 200 homes. Grove is also a major shareholder in Cygnet, one of the largest private provider of psychiatric care services to the NHS.

Lady GaGa Wheelchair Stunt: MSN Readers, Tweeters And Me

July 16, 2011

I’ve just read that Lady GaGa was egged by fans after appearing on stage in a wheelchair during her concert in Sydney last week. MSN has this article with views for and against the ‘stunt.’ And I wrote up my thoughts on it here. As you’ll see, I think the egging was totally unnecessary.

Lady Gaga Criticised By American Charities For Using Wheelchair As Prop

July 15, 2011

Any thoughts on this, readers?

She has been criticised for her use of religious symbolism, slammed for some of her song lyrics and had animal rights groups up in arms over her meat dress.

But Lady Gaga might have pushed her critics over the edge last night after she came on stage in Australia in a wheelchair.

The able-bodied star has caused outrage among disability groups after she wheeled herself on in front of 1,000 people at the Sydney Town Hall.

Six songs into the ten song set, Gaga went off for a costume change and came on in a wheelchair wearing a PVC mermaid tail before launching into her single You And I.

But although her fans went crazy for the performance, it was met with disapproval from some disability organisations and advocacy groups.

In a statement to RadarOnline, Jesse Billauer, founder of the Life Rolls On Foundation, fumed: ‘I haven’t seen Lady Gaga’s performance, but respect her artistic expression as an artist.

‘Since this isn’t the first time she has used a wheelchair in her performances, I invite her to learn more about the 5.6 million Americans who live with paralysis.

‘I extend a personal invitation to Lady Gaga to attend one of our Life Rolls On events where quadriplegics and paraplegics surf, skate, and snowboard, so she can see how much is possible beyond a wheelchair.

‘Maybe that will be most shocking to her of all. They, like me, unfortunately, don’t use a wheelchair for shock value.’

And The Roman Reed Foundation, which promotes spinal cord injury research, took to its Twitter page to write: ‘Dear @ladygaga how about using your celebrity status 2 try 2 get us out of wheelchairs. Instead of cruising one. Cool?!’

This isn’t the first time Gaga has used a wheelchair as a prop – she is seen being wheeled into a hotel in the video for her hit song Paparazzi wearing a neck brace after being pushed off a balcony by her lover.

Speaking to Vanity Fair at the time, she said the video was meant to ‘show the hilarity to which people will fame-whore themselves.’

And she added: ‘I had girls in wheelchairs crying to me at meet-and-greets, telling me that when they saw that video it changed their lives.’

But Gaga is not the first music artists to use a wheelchair as a prop and many said she had ripped off Bette Midler’s famous stage character Delores Delago, a beached mermaid that appears on stage in a wheelchair.

And at the 1992 Reading Festival, the late Kurt Cobain, the Nirvana frontman was wheeled on to the stage for their headlining set in a dig at journalists who had accused Kurt of being a drug addict and had made speculations about his mental health.

Having failed to make a comment about her wheelchair stunt, Gaga jetted out of Sydney this morning.

And unlike other stars on long-haul flights who opt for comfy clothes for the journey, Gaga left the country in a black leather dress and towering Louboutin heels.

But it was her hat that stood out as she got out of her car and made her way to the terminal blowing kisses to her fans.

The huge black and white straw hat appeared to have a huge rip in it, which she looked out of as she walked through the airport.

I recently covered the news that Lady Gaga is learning Sign Language because she wants to communicate with her Deaf fans. Surely someone who is prepared to go through so much effort to make one group of disabled people feel included in her music wouldn’t be trying to offend another group of disabled people? Has anyone considered the fact that she might have been trying to make wheelchair users in her audience feel included, welcomed, or even- shock horror- cool?

Dentist In Scotland Caters For Children With Autism

July 14, 2011

A dental service for children with special needs has been launched by Public Health Minister Michael Matheson.

Bridgeton Health Centre’s paediatric dental service has been re-designed to make it more calming and child-friendly, in an attempt to remove any fears children with special needs may have, particularly those with autism.

The Glasgow centre’s re-developed service is the brainchild of two NHS Greater Glasgow and Clyde staff: Lyndsay Ovenstone, senior dental officer, and Debbie Connelly, health improvement senior for oral health.

Mr Matheson said: “During the past decade there has been an increasing trend in the percentage of five year olds in Scotland with no obvious dental decay. However, we must continue to do more, particularly to accelerate the improvements in more deprived areas and address the barriers to good dental health for children, to enable us to improve the future oral health of the nation.

“That’s why I’m delighted to be in Bridgeton, Glasgow to launch this innovative new service. I want to thank everyone involved in this project for bringing it to fruition and for the support of staff and parents for making these changes a reality. Through their efforts we are already seeing great improvements in that trip-to-the-dentist experience for children with special needs in this part of the city.”

Ms Connelly said: “Children with autism have difficulty understanding and relating to other people, as well as taking part in everyday family life. And a trip to the dentist can be terrifying for them.

“Children with this condition like routine and find unfamiliar settings very daunting. And in a new environment they tend to experience a sensory overload as they cannot process the sheer volume of new information. Not only is this upsetting for them it is also incredibly distressing for their parents too.”

Children visiting the dentist for the first time are given talking books before their appointment to help put them at ease. The books show pictures of the centre, the staff and the surgery, with a narrative provided for each picture to familiarise the child with the new experience.

Questionnaires are also sent to the parent or carer before the visit, which allows dental staff to tailor the experience to any particular needs.

Ms Connelly added: “For example, if we know in advance what a child’s favourite cartoon character we can arrange in advance to have this playing when the child enters the room, providing instant distraction so the child is relaxed.”

Reading Council Scraps Peak Bus Fares For Disabled People

July 14, 2011

Reading Council’s Labour administration has reversed the decision to charge disabled people to use buses at peak times introduced in April.

It will not reintroduce free peak travel for the over-60s which was also stopped under the previous Liberal Democrat-Conservative council.

The free travel concessions for disabled people will start in September.

A Conservative spokesman said he did not oppose the decision.

It will cost the council £65,000 a year to reintroduce free travel for disabled people before 0930 BST.

Bus lanes

The changes will affect 3,500 disabled people and about 1,500 of their travel companions.

Conservative transport spokesman councillor Richard Willis said: “The council said it was funding the disabled bus travel at peak times from £80k it plans to raise from bus lane enforcement fines.

“I am happy to support this, providing this forecast is correct.

“However I am concerned about how the council is going to pay for things such as green bins now they have got rid of the charges.

“They are promising to reverse a number of measures we brought in to balance the books and to deal with the £200m debt we inherited.”

Labour’s cabinet member for transport, Councillor Tony Page, said: “The changes we are making are funded from the existing budget and don’t involve extra expenditure over the approved budget.

“They are funded by savings elsewhere or increased income. The council’s reserves are untouched.”

In most of the UK, people are only allowed to use their concessionary bus passes after 0930 BST.

Robert Cowie’s Mother Faces No Charges Over His Dignitas Death

July 14, 2011

A Glasgow woman who took her paralysed son to the Swiss Dignitas clinic so that he could commit suicide will not face charges, police have said.

Helen Cowie told BBC Radio Scotland’s Call Kaye show that she helped Robert, 33, take his own life after he was left paralysed from the neck down.

Following the broadcast last month, police said they would consider the circumstances of Mr Cowie’s death.

The Strathclyde force has now decided not to launch an investigation.

Mrs Cowie, from the city’s Cardonald area, told Call Kaye that her son was paralysed in a swimming accident three years ago.

‘His decision’

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

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

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

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

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

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

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

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

“It should be allowed here, but not willy-nilly to everybody. It should be investigated hard because you have to be in a sane mind to have it done.”

After considering the circumstances of Mr Cowie’s death, Strathclyde Police said they had now decided not to launch an investigation.

A spokeswoman said: “Strathclyde Police is not conducting any investigation into the death of Robert Cowie at this time.”

Spinal Cord Repair Restores Breathing In Mice

July 14, 2011

The ability to breathe has been restored to mice with spinal cord injuries, in what US researchers describe as a medical first.

Some patients with damaged spinal cords need ventilators as they are unable to breathe on their own.

A report in the journal Nature showed a nerve graft, coupled with a protein, could restore breathing.

Human trials could begin soon, which the charity Spinal Research said could be “potentially life-changing”.

Damage at the top of the spinal cord, around the neck, can interrupt messages to the diaphragm – a layer of muscle involved in breathing.

Challenge

The cord is notoriously resistant to repair. Techniques such as nerve grafts, which worked in the arms and legs, had shown limited success with the spinal cord, doctors at the Case Western Reserve University said.

The spinal cord scars after it is damaged, and molecules – chondroitin sulphate proteoglycans – prevent nerves repairing and forming new connections.

The researchers used a nerve graft to form a bridge across the scar at the same time as injecting an enzyme – chondoitinase ABC – which attacked the inhibitory molecules.

Three months later, tests showed the mice had recovered 80-100% of breathing function.

Professor of neuroscience and lead researcher Jerry Silver said: “The use of the enzyme, that’s helped get the nerve fibres out and we were amazed at, once they get out, how well they can reconnect.

“The spinal cord can just figure things out and restore really beautiful functional breathing patterns.”

Researchers hope to begin trials in humans. They are also investigating whether bladder function can be restored, which can be lost when the lower spine is damaged.

Dr Mark Bacon, from the charity Spinal Research, said: “Long distance regeneration has remained quite elusive in the field of spinal cord injury repair, so to achieve this and at the end of it establish functional connections that actually do something useful – restore breathing – is remarkable.

“It is potentially life-changing if this or similar techniques can be translated to the clinic.”

Able Life: Elaine MacDonald Ruling

July 13, 2011

I’ll be back on Able Life tonight at 8pm on http://www.ableradio.com. This week, I’ll be talking about the rulimg in the Elaine MacDonald case. As always, I have a sneak preview for you, readers, in case you can’t listen to the whole show.

The Sun Defends The Source Of Gordon Brown’s Son Cystic Fibrosis Story

July 13, 2011

The Sun newspaper has strongly denied accessing former Prime Minister Gordon Brown’s family medical records without his knowledge.

The paper said a story in 2006 that Mr Brown’s son Fraser had cystic fibrosis came from a member of the public.

The Sun has released a video interview with the unidentified man who it says was the source.

A spokeswoman for Mr Brown said in response: “The matter is now in the hands of police.”

Mr Brown said he was left “in tears” when he was told that the Sun was publishing the story.

He said he did not know how the newspaper got access to the details but said: “I can’t think of any way that the medical condition of a child can be put into the public arena legitimately unless the doctor makes a statement or the family makes a statement.”

‘Felt vindicated’

The paper said the man’s own child also had cystic fibrosis and he wanted to raise awareness of the condition.

The man told the Sun: “I felt vindicated in contacting the Sun.

“I just felt at the time that we could have made something positive out of the tragedy and I believe the truth would have come out eventually anyway.”

The Sun, published by Rupert Murdoch’s News International, said it had conducted an inquiry into the allegations and that it had not accessed the medical records of Mr Brown’s son or commissioned anyone to do so.

In a statement, the paper said: “The story originated from a member of the public whose family has also experienced cystic fibrosis.

“He came to the Sun with this information voluntarily because he wanted to highlight the cause of those afflicted by the disease.

“The individual has provided a written affidavit to a lawyer confirming this.

“On receipt of the information, the Sun approached Mr Brown and discussed with his colleagues how best to present it.

“Those colleagues provided quotes which were used in the published piece which indicated his consent to it.”

But the Cystic Fibrosis Trust questioned the decision to publish the information “without express permission, regardless of their motivation”.

A spokesman said: “The release of any medical information to the media or anyone else is a decision for patients or, in the case of children, their parents to make.”

Committee appearances

The Sun used the front page of Wednesday’s edition to rebut Mr Brown’s claims about the alleged accessing of his son’s medical records.

Mr Brown said he was “disgusted” by the conduct of News International’s newspapers and accused them of having links to criminals.

The Sunday Times, another News International title, rejected this and said it had not broken the law in a story about a flat bought by Mr Brown.

News International is under continuing pressure despite its decision to close the News of the World amid allegations its journalists hacked the phones of murder victims and bereaved service families.

The Commons Culture Committee has asked Mr Murdoch, his son James and News International chief executive Rebekah Brooks to appear before them next week to discuss the allegations and the internal inquiry currently taking place at the company.

News International has said it will “fully co-operate” with the committee but has not confirmed whether they will attend.

Comically Challenged

July 13, 2011

This is coming soon to BBC Northern Ireland, for anyone who is interested in the links between disability and comedy.

Man On Beach Blinded By Rescued Bird

July 13, 2011

A man has been blinded in one eye after an injured gannet he was carrying across a beach on Gower, south Wales pecked his eyeball out of its socket.

Michael Buckland, 38, from Cardiff, spent three days being treated by eye specialists at Swansea’s Singleton Hospital.

The seabird pierced his eyeball and cut his eyelid in two with its beak

Mr Buckland, a welder, has been told the chances of him regaining sight in his right eye are very slim.

He recalled how he was walking on the beach with his girlfriend when the attack happened last month.

Mr Buckland told BBC Wales: “We were just walking along the beach and seen a seagull or gannet in the seaweed so I went over and picked it up – I was going to take it to the sand dunes.

“A family walked up with their dog. The dog was jumping up trying to get its tail and as I looked down at the dog all I saw was a beak coming straight towards my eyes.

“The surgeon said it pecked me about three times. Its beak went through the centre of my eyeball.”

He was rushed to hospital where he had 11 stitches across his eyeball which doctors managed to replace and his right eyelid was sewn up.

Mr Buckland said he has been told he will never be able to work as a welder again.

“They said I’ve got to have an operation in four months time – they are going to take the stitches out and see about another operation to try and get my sight back but they said [the chances are] very slim.”

Abuse Inquiry At Another Castlebeck Care Home, Staff Suspended

July 13, 2011

Allegations of abuse are being investigated at a home for people with learning disabilities in Bristol.

The BBC has learnt that four members of staff have been suspended at Rose Villa, a nine-bed rehabilitation centre in the Brislington area.

The home is run by Castlebeck, the company that also ran Winterbourne View where abuse against vulnerable adults was exposed by BBC Panorama.

Castlebeck confirmed staff had been suspended and an inquiry was under way.

The BBC understands that one person was suspended at Rose Villa in June following allegations made by a whistle-blower.

In the past week, two members of staff have been suspended after inspectors from the Care Quality Commission (CQC) raised safeguarding concerns.

Misconduct allegations

It is believed a further member of staff has been suspended after allegations that a patient was mishandled.

In a statement, the CQC said it had been reviewing all services provided by Castlebeck across England.

The statement added: “Following an inspection [of Rose Villa] on 1 July our inspectors drew the manager’s attention to two separate issues.

“We understand that two members of staff were subsequently suspended.

“We are satisfied that those issues are being addressed and the findings of that inspection will be published in full within the next few weeks.

“We are aware that two other members of staff have also been suspended for other separate reasons.

“In the meantime, we continue to monitor Rose Villa, and if there was any evidence that people were at risk, we would take immediate action.”

Castlebeck confirmed that four members of staff had been suspended following allegations of misconduct.

In a statement it said: “In accordance with our policy we have notified and are working with all relevant authorities as inquiries are being conducted.

“As this process is ongoing we are not able to comment further at this time.”

Avon and Somerset Police said: “Police are assisting multi-agency partners following allegations of abuse. Inquiries continue, however no criminal offences have been disclosed.”

‘Visit regularly’

In a joint statement, NHS Bristol and Bristol City Council said: “The safety and wellbeing of all the patients in the unit is our absolute priority, and we take these concerns with the utmost seriousness.

“Although we do not currently have any Bristol residents in the nine-bed unit, as part of our role as the lead safeguarding organisations, we have visited Rose Villa and reviewed the care and wellbeing of the residents as soon as we were made aware of the allegations concerning Winterbourne View.

“We have continued to visit the home regularly during the intervening period and have provided additional independent support to the home.

“CQC is reviewing all Castlebeck’s homes as part of their overall response to the issues raised by the Panorama programme.”

Winterbourne View was closed following the BBC Panorama programme and Castlebeck apologised.

Smile Could Indicate Autism Risk

July 12, 2011

A smile or a frown could hold the key to helping identify families with a higher risk of autism, a Medical Research Council-funded study has shown.

People with autism often struggle to read other people’s emotions and their brains process facial expressions differently to those without autism.

Now researchers at the University of Cambridge have found that siblings of those with autism show similar brain patterns when viewing facial expressions.

The findings – published in the journal Translational Psychiatry – could help scientists identify a “biomarker”, used to identify genes linked to an increased familial risk of autism.

Michael Spencer, who led the study from the university’s autism research centre, said: “The findings provide a springboard to investigate what specific genes are associated with this biomarker.

“The brain’s response to facial emotion could be a fundamental building block in causing autism and its associated difficulties.”

The study compared 40 families that had both a teenager with autism and a sibling without with 40 teenagers with no family history of autism.

By comparing the brain’s activity when viewing a happy versus a neutral face, the scientists were able to observe the areas within the brain that respond to this emotion.

Even though siblings of those with autism did not have a diagnosis of autism or Asperger’s syndrome, they had decreased activity in various areas of the brain.

In a family where one child already has autism, the chances of a subsequent child developing autism are at least 20 times higher than in the general population – but the reason for this increased risk is unknown.

Rebekah Brooks’s Phone Call To Gordon Brown Is Unforgivable

July 12, 2011

This article, by special mother Dea Birkett, is well worth a read. I am not the parent of a disabled child, or any child at all, but what she says makes perfect sense to me.

Sainsburys Told Transgender Woman To Use Disabled Toilet

July 12, 2011

Sainsbury’s has apologised to a former man now living as a woman after she was told to use the disabled toilets at a Surrey store.

Stephanie Collins, 55, has been a transgender woman for two years and is awaiting an amended birth certificate.

As she left the women’s toilets in the Walton-on-Thames store, she was told by a member of staff she should use the disabled facility.

Sainsbury’s said it is sorry for any offence it caused Miss Collins.

In a statement, Sainsbury’s said: “We pride ourselves on our high standards in customer service, something that clearly has not been met in this instance.

‘Typical of ignorance’

“Our store manager will be writing to Miss Collins to apologise in person. We hope that this will not prevent her from shopping with us in the future.”

BBC Surrey was unable to contact Miss Collins.

According to the Human Rights Commission, transgender is “an umbrella term used by people whose gender identity and/or gender expression differs from their birth sex”, regardless of whether they choose to have gender-reassignment treatment.

Campaigning Guildford councillor Chris Ward told BBC Surrey the incident was typical of the ignorance of status of transgender people.

“People don’t understand,” he said.

“It isn’t their place to make that judgment,” he said. “It’s absolutely vital that people working in retail get training.”

Former Friends Battle Each Other For Funds For SDR Surgery For Daughters

July 12, 2011

What a shame that this seems to have ruined what could have been an unbreakable connection between four people who have so many important things in common. I’ve written before about both this operation and the importance of friends who share your disability. I can’t say whether or not the operations will help the girls, but I do know that the friendships that they and their mothers could have had would have been extremely valuable to all of them. I hope they can make up one day.

THE parents of two disabled toddlers are waging a bitter fund-raising battle for the same life-changing operation.

Izzy Kuta, four, and Honey Lock, five, were born with cerebral palsy and are unable to walk unaided. Their families, who live 12 miles from each other, are locked in a race to raise £50,000 for the surgery in the US.

The girls need to travel from their homes in Essex to St Louis Children’s Hospital in Missouri for the procedure to allow them to walk.

But Izzy’s family, from Maldon, have accused the Locks of copying their fund-raising ideas and canvassing for charitable donations on their “home patch”. Honey’s mother Rebecca Lock, from Burnham, says she will have nothing more to do with former friend Natasha Wallis, 26, branding her “nasty”.

The selective dorsal rhizotomy treatment – in which surgeons snip “misfiring” nerves which cause muscle spasms – must be performed before the children reach six for the best results.

Shirley Hume, Izzy’s aunt, said Honey’s family copied her fund-raising ideas and branded the Locks “dishonest” for asking for £60,000 not £50,000.

She added: “We go fund-raising in the streets of Maldon but no one wants to help as they have donated to Honey.”

Rebecca, 26, hit back saying: “The push is really on to raise the rest of the money needed. They’ve been nasty.” She said the extra money would pay for two years of extensive physiotherapy.

Honey has her operation in August, Izzy has one year before she travels.

World’s First Double Leg Transplant Carried Out In Spain

July 12, 2011

Doctors in Spain have carried out the world’s first double leg transplant, giving new limbs to a patient who lost both at mid-thigh in an accident.

The Valencia regional government said the surgical team was led by Dr Pedro Cavadas, who in 2009 carried out Spain’s first face transplant – the first anywhere to include a new tongue and jaw.

It said the operation at La Fe Hospital in Valencia was extremely complex and Dr Cavadas will wait at least 48 hours to release more information.

“Today we can say a landmark has been reached,” said Dr Rafael Matesanz, director of the National Transplant Organisation.

The operation began Sunday night, and lasted about 13 or 14 hours.

There were no details as to how the patient was doing, but if the limbs are rejected it will happen more or less immediately. It will be a month or so before doctors know how successful the surgery has been.

Doctors originally tried to give the patient artificial legs, but the operation was unsuccessful as the patient had lost them so high.

The operation was approved in 2010 and since then doctors have been waiting for legs to be donated.

No information was given on the donor or the recipient.

Injured Captain Pollock To Miss Wheelchair Basketball European Championships

July 12, 2011

GB men’s wheelchair basketball captain Jon Pollock will miss September’s European Championships in Israel after failing to overcome a shoulder injury.

The absence of the experienced Pollock, who has played at three Paralympics, will be a blow to Britain’s hopes of success.

He will be replaced by 16-year-old Harry Brown, who made his senior debut in May’s Paralympic World Cup.

The competition takes place in Nazareth from 8-17 September.

The team finished third at the Paralympic World Cup in Manchester, losing to France and Canada before beating Brazil.

Ahead of the Europeans they will attend the Spitfire Tournament in Ontario, Canada and the USA Invitational in Charlotte, North Carolina before facing the hosts Israel, Italy, Turkey, Switzerland and Belgium in the pool stages.

Much will depend on the performances of the likes of Simon Munn, Terry Bywater and Abdi Jama as GB chase a first European title since 1995.

Head Coach Murray Treseder said: “We have chosen the strongest squad we can. We will sorely miss Jon Pollock’s leadership and experience but this will allow us to play a number of different rotations and combinations and allow emerging players to come through and stamp their mark in the team.”

“The European Championships is full of very strong teams and it is anyone’s for the taking.

“We expect that our preparation prior to the tournament will give us the best chance of going and being able to perform at the highest level we possibly can.”

GB squad: Abdi Jama, Matt Byrne, Jon Hall, Dan Highcock (Rhinos), Peter Finbow, Ian Sagar (Owls), Matt Sealy, Ade Orogbemi, Simon Munn, Gaz Choudhry (Capital City), Harry Brown, Terry Bywater (Steelers)

Birth Defects Linked To Smoking In Pregnancy For First Time

July 12, 2011

Doctors are urging mothers-to-be to give up cigarettes after new research linked smoking in pregnancy to babies suffering birth defects such as clubfoot, missing limbs and deformed limbs.

Those who smoke while expecting a baby increase the risk of their child being born with a serious malformation by as much as 50%, the study found. The disclosure led to calls for new measures to reduce what the authors called “staggeringly high” levels of smoking among pregnant women.

Although smoking by pregnant women has already been linked to a higher risk of a woman having a miscarriage or her baby being born prematurely or having a low birth weight, 45% of women under 20 do so while one in seven is still a smoker when she gives birth.

The authors from University College London said their paper was “the first comprehensive review to identify the specific birth defects most associated with smoking.”

They reviewed 172 research papers published in the past 51 years covering 174,000 cases of birth defects. They concluded that for women who smoke while pregnant “the risk was increased by 26% for having a baby with missing or deformed limbs, 28% for clubfoot, 27% for gastrointestinal defects, 33% for skull defects, 25% for eye defects and 28% for cleft lip/palate.”

The biggest increase in risk was for their baby having a birth defect called gastroschisis, in which part of its stomach or intestines protrude through the skin.

“People think that few women still smoke when pregnant. But the reality is that particularly in women under 20, the numbers are still staggeringly high”, said Professor Allan Hackshaw, the lead author, who is based at the UCL cancer institute. Public health education efforts usually do not mention birth defects as a possible result of maternal smoking, because until now it was not known which ones were linked.

“Now we have this evidence, advice should be more explicit about the kinds of serious defects such as deformed limbs, and facial and gastrointestinal malformations that babies of mothers who smoke during pregnancy could suffer from. The message from this research is that women should quit smoking before becoming pregnant, or very early on, to reduce the chance of having a baby with a serious and lifelong physical defect”, added Hackshaw.

Recent NHS data showed the proportion of pregnant women who were still smoking when they delivered their baby had fallen from 16.1% in 2006 to 14% in England last year, but was as high as 31.4% in Blackpool.

Janet Fyle, professional policy adviser at the Royal College of Midwives, said the study underlined that smoking both before conception and while pregnant damaged both the mother and foetus’s health.

“Women thinking of becoming pregnant; pregnant women and women with young children should be told about the negative effects of smoking and the impact on their long-term health and that of others living in the home. Midwives should advise women who smoke to give up smoking and refer them to stop smoking services to help them quit,” said Fyle. “Partners should also consider this as a good time to consider giving up smoking.”

Professor Michael Patton, a consultant clinical geneticist at St George’s hospital medical school in London and medical director of disabled children’s charity Newlife Foundation, said: “We have known for many years that smoking is harmful to the growth of the baby but this comprehensive review of the research on smoking in pregnancy also identifies the risk of causing certain birth defects and disabilities in the baby. This is an important health message as there are still many mothers, particularly young mothers, who continue to smoke in pregnancy.”

The Department of Health said women who smoked while pregnant should give up. “Smoking in pregnancy is a major public health concern posing risk to both mother and their baby’s health”, said a spokeswoman. The coalition’s recent Tobacco Control Plan aimed to reduce rates of smoking throughout pregnancy to 11% or less by the end of 2015.

The Sun And Gordon Brown’s Children

July 11, 2011

This is unbelievable. No matter what Gordon Brown and his family were in the public eye for, there are limits. They are still ordinary people, still parents, and no parents deserve this. I’ve never thought much of the Sun, but today, I think even less of them.

Confidential health records for Brown’s family have reached the media on two different occasions. In October 2006, the then editor of the Sun, Rebekah Brooks, contacted the Browns to tell them that they had obtained details from the medical file of their four-month-old son, Fraser, which revealed his cystic fibrosis.

This appears to have been a clear breach of the Data Protection Act, which would allow such a disclosure only if it were in the public interest. Friends of the Browns say the call caused them immense distress, since they were only coming to terms with the diagnosis, which had not been confirmed. The Sun published the story.

David Muir, one of Brown’s most senior advisers at No 10, said: “They were contacted by Rebekah Brooks, who told them that they had information that Fraser had cystic fibrosis, which was a matter that they, the family, were just getting their heads around at the time and dealing with. They didn’t know how Rebekah came across this information and now, what’s come to light, it was obtained by what appeared to be illegal methods.”

Five years earlier, when their first child, Jennifer, was born on 28 December 2001, a small group of specialist doctors and nurses was aware that she had suffered a brain haemorrhage and was dying. By some means which has not been discovered, this highly sensitive information was obtained by news organisations, who published it over the weekend before Jennifer died, on Monday 6 January 2002.

All Remploy Factories Could Close

July 11, 2011

This could be a very good thing, if the Government uses the opportunity to do more to encourage mainstream employers to employ disabled people.

The government is “minded to accept” closure of the remaining Remploy factories for disabled workers, according to a consultation on the end of government support for segregated employment.

Maria Miller, minister for disabled people, said a review of disability employment services had suggested that state funding “could be better used”.

The three-month consultation will bring to a head the long-running battle over the Remploy factories, set up after the second world war to provide a sheltered environment for employment of disabled people.

Trade unions representing many of the 2,800 people still working at the 54 remaining factories are vociferously opposed to their closure. But the units lose a total £63m a year and each employee is subsidised by an average £25,000.

The review, led by Liz Sayce, chief executive of disability charity Radar, concluded that state support for segregated employment should be phased out in favour of helping disabled people to get and keep jobs in the general labour market.

Sayce suggested that reallocating resources could increase the number of disabled people being helped from 65,000 to almost 100,000.

The review has cast doubt also on the future of the nine residential training colleges for disabled people. Last year, they found work for just 230 people at a cost each of £78,000.

Miller said: “I welcome the central theme of the Sayce review, that resources for supporting disabled people into employment should be focused on disabled people themselves rather than on specific institutions.”

The consultation proposes that viable Remploy factories could be spun out of the public sector. However, it points out that none of the 15 factory business streams is currently profitable.

The separate Remploy business helping people into mainstream jobs, which aims to support 20,000 workers by 2013, would also become a social enterprise under the plans.

Leading disability charities are backing the proposals. Mark Goldring, chief executive of learning disability charity Mencap, said: “We can do much more to help people with disabilities into work in a way that directly benefits them and wider society.”

The consultation will run until 17 October.

Penny Pepper On Identity

July 11, 2011

Brilliant!

http://twitter.com/#!/disabilityarts/status/90361213782994945

Probe Into Amputee Iraq Soldier’s Rollercoaster Death

July 11, 2011

A 208ft tall rollercoaster in New York state has remained closed amid questions about the death of an Iraq war veteran who lost both his legs to a roadside bomb and the decision to allow him on the ride.

Sgt James Hackemer, 29, of Gowanda, was thrown from the Ride of Steel at Darien Lake Theme Park Resort, between Buffalo and Rochester, on Friday.

Amusement park industry consultant Dennis Speigel said two factors should be considered when determining whether someone should be allowed on a ride.

“One is rider responsibility and then there is operator responsibility, and those two issues have to homogenise,” he said. “This just seems to me that it was a bad decision on both parts.”

Sgt Hackemer’s relatives have said they do not hold the park responsible for his death.

“It’s nobody’s fault. It was an accident. James thought it wasn’t an issue,” his sister Jody Hackemer said at the weekend regarding her brother’s disability.

She said her brother had recently returned from the Walter Reed Army Medical Centre in Washington DC, where he was fitted with a new set of prosthetic legs. Ms Hackemer said she did not believe he was wearing the prostheses on the rollercoaster.

Rules posted on the park’s website for the Ride of Steel say guests with “certain body proportions” may not be able to ride it, but it does not give specifics. The rules specifically bar people without both legs from riding at least two other coasters in the park, the Motocoaster and the Predator.

Mr Speigel, who is not involved in the probe, wondered whether Sgt Hackemer’s military service played a role in the decision to allow the ride.

Parks in general were sensitive to the military, he said, with many offering significant discounts and ticket giveaways to service members and their families.

Small Teen Bigger World- Life As A Teenager With Dwarfism

July 11, 2011

What is it like to leave home when you have restrictive growth disorder and live in a world geared towards people much taller than you?

“We can’t just walk down the street and not be laughed at, or pointed at or pointed out.

“It’s like walking out in a ridiculous costume and everyone looking at you.”

Standing at just under 4ft tall (121cm), 17-year-old Jasmine Burkitt (who is known as Jazz) has a rare form of dwarfism, or restricted growth disorder.

Dwarfism is the term is commonly used to describe people with a final adult height of 4ft 10in (147cm) or less.

There are estimated to be several hundred conditions that can cause restricted growth – these can cause proportionate or disproportionate restricted growth.

Jazz, who inherited the condition from her mother, was bullied at school for her size and has to adapt how she lives day-to-day to cope with the bigger world around her.

“I was badly bullied about my size at school so I had to leave when I was 13.

“A boy picked me up and then he just dropped me again, but I landed on my knees and that really did damage my knees quite badly.”

Jazz’s mother decided to home-school her instead, which Jazz says has also given her the opportunity to cook, clean and learn to get by with her condition.

Last year Jazz followed her passion for animals and left home for the first time to go and study animal welfare at Llysfasi College in Ruthin, Denbighshire.

“I was worried being at college would be like being back at school where I was bullied.

“But here, no-one sees me as any different. I’m just Jazz,” she says.

She has a specially-adapted room at the college, with a lowered shower and step ladders so that she can reach shelves.

“Being small hasn’t held me back at all and the staff have done loads to make sure I fit in.

“We have to wear a lab coat. Everyone was picking small, medium and large lab coats and I was like – there’s no way I’m going to fit in even the small one.

“So the college had the company measure one perfectly, and it looks like any other ones but for me. And I’m not joking, I almost cried.”

Her decision to leave home was tough, as she is her mother’s registered carer, and their shared understanding of their condition means they are very close.

But she does not regret her decision to leave. “I wanted my own little bit of independence… and I love it.”

Jazz’s father was addicted to drugs, and her mother cut off contact with him when she was born.

Jazz decided to get in touch with her father and met him for the first time.

“I wanted to find out what makes me, me,” says Jazz.

He has now become a part of her life, and both share a love of animals and a similar sense of humour.

“It has been really difficult… and harder emotionally than I thought it would be.

“I feel everything’s whole now, I’m not missing anything.”

Jazz has never wanted to find out which specific form of restrictive growth she has.

Her mother endured painful and extensive tests as a child, including skin grafts, carried out by doctors trying to research her condition and find how to cure it.

“We’re pretty unique in that way,” says Jazz.

“We don’t want people knowing what it is, and then getting the scientists to remove it, and stop (people) having children like this.”

There are a number of restrictive growth disorder treatments including growth hormone injections and surgery to lengthen short arms and legs.

But Jazz says she has never considered altering her natural height.

“I was born with this condition – I learnt to walk with this condition, I learnt to do everything with this condition.

“It’s not something I separate from me, it’s very much a part of my life. And I embrace that and I would never change myself.

“It’s because of my condition that I don’t want to have any limits.”

Small Teen Bigger World can be seen on BBC Three at 2100 BST, Monday 11 July 2011, and is the first in a four-part series, or catch up afterwards on BBC iPlayer.

Yvonne Hossack Wins Legal Aid Review

July 10, 2011

A campaigning solicitor who has spent her fighting for the elderly and disabled won a crucial victory yesterday in her battle for legal aid.

Yvonne Hossack has been working for her vulnerable clients for free since November when the Legal Services Commission (LSC) refused to renew her legal aid contracts due to errors in her applications.

Yesterday she said she was “absolutely delighted” when the Court of Appeal gave her leave for a judicial review into one of the applications.

Lord Justice Richards pointed out that 124 of the 125 applications had been rejected on the grounds that the applicant must have “at least a part-time presence in the area for which the bid was made”.

However, in one application, for Northamptonshire, where Ms Hossack has an office, Wiltshire was listed in error. She may now apply for a judicial review because the contract had never been awarded to anyone else.

Ms Hossack is credited with saving more than 80 care homes from closure. But her methods have angered local councils.

In 2009 she was cleared of professional misconduct after Northamptonshire, Hull and Staffordshire councils attempted to have her struck off.

Mother Criticised For Raising Awareness Of Rett Syndrome By Filming Daughter

July 10, 2011

I’ve just read this. I’ve spent many years of my life trying to raise awareness of my own DisAbility, and others through this blog. So I can understand where this mother is coming from. I can’t see why she’s being criticised- the child she’s filming is her own. So she’s not hurting anyone. In fact she’s trying to help others in the same situation- something for which she should be praised. Your comments are very welcome, as always.

A mother from Croydon, in south London, who has been recording her young daughter’s pain from an incurable illness online has been criticised for her attempt to raise awareness of the condition.

Melody Ballard suffers from Rett Syndrome.

Her mother Karina said posting videos on the internet is her way of reaching out to parents of other children with the rare disease.

US Amputee Iraq War Veteran Killed By Rollercoaster

July 9, 2011

Sad news.

A US Army veteran who lost his legs while deployed in Iraq was killed after being thrown from a rollercoaster at a theme park in upstate New York.

The Genesee County sheriff’s office said 29-year-old James Hackemer, of Gowanda, was thrown from the Ride of Steel rollercoaster at the Darien Lake Theme Park Resort, between Buffalo and Rochester.

The park’s website describes the Ride of Steel as one of the tallest rollercoasters east of the Mississippi River, climbing more than 200 feet and reaching speeds of more than 70mph.

A park spokeswoman said the rollercoaster and surrounding area were closed after the accident and authorities and the park’s safety experts were investigating.

Claire Khaw Expelled From BNP

July 8, 2011

I’ve just read that Claire Khaw has been expelled from the BNP. This explains why.

Butlins Branch Bans Learning Disabled Adults

July 8, 2011

Does anyone else sense more than a little discrimination here?

Twenty-six adults with severe learning difficulties have been told they cannot visit a Butlins holiday resort because large groups are “intimidating”.

The Firth Park Friday Club, in Sheffield, has visited Butlins in Skegness for the past 19 years but this year the manager has refused admission.

Butlins said it found “large all-adult groups very intimidating”.

Christina Staniland, 86, whose son travels with the club, said the group were “heartbroken” and “angry”.

Mrs Staniland, of Longley, said 26 adults and a group of 10 carers from the Friday Club had visited Butlins for a number of years.

‘Cried a lot’

However, when the group attempted to book this year’s break, they were told large groups were only accepted “at the resort director’s discretion”.

Mrs Staniland’s son Gary, 59, has Down’s Syndrome and relies on day and respite care.

She said: “I’m more than angry. I’ve cried a lot myself. I’m not only fighting for this but to keep the day services and the respite care.”

Butlins said in a statement that due to the group size “growing in recent years” it was “unable to accept this group unless they come in two smaller groups on different breaks”.

“We are concerned that a group of adults has experienced some inconvenience over a booking they attempted to make through a travel agent,” the company said.

“Unfortunately the group has not been in direct contact with us to discuss the situation, but we would welcome the chance to speak with them and resolve this.

“We do not generally accept large all-adult parties during family holiday breaks. In this particular case the party consisted of 36 adults.

“We would be more than delighted to welcome this group if they can be split into two parties on different breaks.”

Mrs Staniland said breaking the holiday into two groups on separate dates was not an option as the council funding was only for a certain date.

She said the decision was “shocking” and she could not understand the resort’s decision as the group had not received any complaints in the past.

You Can Now Play Boccia Online

July 7, 2011

This is a good idea. I wonder if it will make non-disabled people take an interest in Boccia?

http://twitter.com/#!/scope/status/88989163038318592

Wife Cheating On Husband Who Became Disabled

July 7, 2011

This has really upset me. There is so much more to love than a physical relationship. Comments welcome.

Judge Who Disagreed In Elaine McDonald Case Now Fears For Elderly

July 7, 2011

A judge said she was troubled by the implications of a supreme court decision against a former ballerina which campaigners say could lead to the elderly being “warehoused” at home “without regard to their quality of life”.

Supreme court justice Lady Hale, a member of the panel of five judges who made the ruling, told of her fears that older people “might be left lying in faeces” because local authorities would be entitled to withdraw help.

Campaigning charity Age UK described the ruling as “shameful” and suggested that it could lead to the infirm being forced to “sleep in their own urine”.

Lady Hale and four other supreme court justices had been asked to rule on a case in which Elaine McDonald, 68, who has had a stroke, argued that her council should provide a night-time carer to help her use a commode at her London flat rather than merely supply her with incontinence pads.

Four justices ruled in favour of the Royal London Borough of Kensington and Chelsea, and the appeal was dismissed by a 4 – 1 majority.

Lady Hale disagreed with her colleagues, and said she would have allowed the appeal. In her written analysis she raised concerns about the implications of the ruling.

The high court and court of appeal had earlier ruled in the council’s favour.

Judges heard that McDonald, who was once a star of Scottish Ballet and received the OBE in 1983, was left with reduced mobility after a stroke in September 1999.

She had argued that the care package she received from Kensington and Chelsea should include assistance at night to use a commode.

The council said McDonald should use incontinence pads or absorbent sheets – even though she is not incontinent – at night.

Bosses said incontinence pads would reduce the risk of McDonald being hurt using a commode, provide independence and privacy, and cut the cost of her care by £22,000 a year.

McDonald said she was “appalled” at the thought of being “treated as incontinent” and considered the use of pads an “intolerable affront to her dignity”.

Trailblazers Target Taxi Drivers

July 7, 2011

The treatment of the disabled by some bus drivers and private taxi firms will be highlighted at Westminster by a campaign group.

They will tell MPs how disabled passengers have been left stranded at bus stops or refused entry to buses.

The Muscular Dystrophy Campaign’s Trailblazers group will also speak of how disabled people are repeatedly ignored by taxi drivers or have been charged double the usual fare.

One of the group, Judith Merry, 22, a wheelchair user from Aylesbury in Buckinghamshire, was left stranded at a bus stop late at night in a quiet part of London.

She and her mother attempted to board a bus, but after Ms Merry’s mother got on, the driver pulled away instead of putting down the bus’s ramp, claiming not to have seen her.

Trailblazers also spoke of disabled people being sworn at by cabbies.

Trailblazers project manager Bobby Ancil said: “Disabled people have the same need to use buses and taxis as non-disabled people – to get to work, to get to appointments and to socialise with friends and family.

“Unfortunately, our public transport system and taxi companies have not moved forward enough to offer a basic service and fair standards to disabled passengers.

“Be it physical access or the attitudes of business owners and drivers, disabled travellers are facing obstacles daily that should have been left way back in the past.”

Calling Disabled People Who Went To Uni

July 6, 2011

http://twitter.com/#!/scope/status/88546468478201856

I’ve emailed Scope, and hope some readers might also be interested in this.

Former Ballerina Loses Appeal For Night Carer To Help Her Use The Toilet

July 6, 2011

The end of that headline nearly got Daily Mail style capital-letter treatment, because I am so shocked by this story.

A former ballerina from west London left disabled by a stroke has lost her Supreme Court case to get an overnight carer to help her use a commode.

Elaine McDonald, 67, had challenged Royal Borough of Kensington and Chelsea after she lost her case at the Court of Appeal in London last October.

Since the stroke in 1999 Ms McDonald needs to use a wheelchair outside.

The Equality and Human Rights Commission said councils will now “find it easier to justify withdrawing care”.

Ms McDonald’s appeal was dismissed by judges in a majority ruling.

The pensioner, who was once a star of Scottish Ballet, received an OBE in 1983.

‘Significant setback ‘

John Wadham, group director at the Equality and Human Rights Commission, said he was “disappointed” with the ruling which was a “significant setback for people who receive care in their home”.

“Ms McDonald is not incontinent. However, this judgment means she will be treated as such.

“Local authorities will now have greater discretion in deciding how to meet a person’s home care needs and will find it easier to justify withdrawing care.

“This means that older people’s human rights to privacy, autonomy and dignity will often be put at serious risk.

“The court has missed a significant opportunity to interpret the law to protect some of the most vulnerable people in society,” he said.

The former ballerina had claimed the care package she received from the authority, to cover her needs during the day and night, should include assistance at night to use a commode.

Ms McDonald had told a previous hearing that she was not incontinent, but was left with no option to use incontinence pads overnight, which she considered an “affront to her dignity”, and wanted help to use a commode.

Non Invasive Method Of Screening IVF Embryos For Abnormalities Found By Doctors

July 6, 2011

Fertility doctors say they have found a non-invasive way to screen IVF embryos for genetic abnormalities.

The current method involves taking cells from the embryo itself, which experts fear may be harmful.

Now UK researchers say it is possible to run the same checks on cells surrounding the fertilised egg that are normally thrown away.

The test could tell a woman if her baby was likely to have a condition like Down’s syndrome.

It would not only be less invasive, but cheaper too.

Lead researcher Elpida Fragouli, from Oxford University, said: “In the ovary, the eggs are surrounded by a cloud of tiny cells, known as cumulus cells.

“Cumulus cells are routinely stripped off eggs during IVF treatments and are usually discarded, so it should be straightforward to obtain them for analysis.”

Dr Fragouli’s team examined cumulus cells from 26 women undergoing genetic screening prior to IVF treatment.

They found abnormalities in the cumulus cells that appeared to tally with genetic errors in the eggs they had surrounded.

Dr Fragouli added: “We are still in the process of establishing the usefulness of these genes as non-invasive markers of egg chromosome status and quality.

“However, it is interesting that several of these genes are involved in vital cellular functions of the cumulus cells and egg they enclose, such as cell signalling and regulation, hormonal response and cell death, and so they may shed light on the genetic origins of chromosome abnormality.”

UK fertility expert Stuart Lavery said: “It would be much cheaper, much less invasive and something that may have a good clinical application.

“Potentially what it may allow us to do is to have the ability of picking the best embryo from the best egg which means that we can hopefully move towards single embryo transfer.”

Putting only one fertilised egg into the womb avoids multiple births, which are known to increase the health risks of both mother and child.

What Happened When Sally Bercow Visited The Grange Day Centre

July 6, 2011

This article is an update on the Grange Day Centre, which, it was recently confirmed, is to close at the end of this month. This is a story that I have covered quite a bit at Same Difference. I was very sorry to learn that the Centre is definitely closing.

Thousands Of Pregnancies Aborted Last Year For Abnormalities

July 5, 2011

This is shocking.

Thousands of pregnancies were aborted last year for ‘abnormalities’ including 500 for Down’s syndrome, new figures reveal.

In total, there were 2,290 abortions for medical problems with the foetus, with 147 performed after 24 weeks.

The statistics for 2010 in England and Wales were released after the Department of Health yielded to a Freedom of Information Request from the Pro Life Alliance, following a five-year legal battle.

It is the first time in nearly a decade that the Government has released data on abortions performed on the grounds of disability.

Julia Millington, spokeswoman for the ProLife Alliance, said: ‘This is a great victory for transparency and freedom of speech and we are delighted that full information about the justification for late abortions is now being made available in the same detail as it was in 2001.’

The data reveals that in 2010, 482 foetuses were aborted for Down’s syndrome, including 10 who were over 24 weeks.

There were also 128 terminations for the nervous disorder spina bifida, including 12 after 24 weeks.

Musculoskeletal problems such as club foot were the reason for 181 abortions, including eight over 24 weeks.

There were seven terminations on the grounds of a cleft palate, rising to 26 terminations for this condition since 2002.

 Abortions for medical conditions in 2010
Total Abortions Abortions over 24wks
All medical conditions 2,290 147
Spina Bifida 128 12
Cleft lip and palate 7 0
Musculoskeletal system (Eg, club foot) 181 8
Down’s syndrome 482 10
Edwards’ syndrome 164 10
Foetus affected by maternal factors 115 7
Family history of inherited disorder 181 1

It marks the end of a six-year battle between an anti-abortion group and the Government for access to the controversial data.

In 2005, Pro Life Alliance asked that the Department of Health to publish data on foetal abnormalities for 2003.

 The figures were suppressed after a Church of England curate, the Rev Joanna Jepson, went to the the High Court to challenge the legality of a baby terminated at 28 weeks in 2001 because it had a cleft palate.

Miss Jepson who was born with a jaw deformation, which was corrected by surgery, said the case demonstrated the ‘culture of physical perfection.’

Foetus at 24 weeks: Newly released data reveals there were 147 abortions after 24 weeks due to medical problems such as Down’s syndrome

The Department of Health had challenged the move, saying the numbers were so low it could lead to women being identified.

The Government then challenged successful appeals made by the anti-abortion group to The Information Commissioner and an Information Tribunal.

 However, in April, the Department of Health finally conceded defeat after the appeal was upheld by the High Court.
They also released figures on abortions to under-16s between 2002 and 2010. There were an astonishing 35,262 terminations during this period.

In 2010 there were 3,718 under-16s abortions in England, including 2,676 to 15-year-olds, 906 to 14-year-olds, 134 to 13-year-olds and two to 12-year-olds.Ms Millington, said: ‘The ProLife Alliance is opposed to all abortion at any stage in pregnancy, but terminating the lives of babies at gestational ages when they could survive is always particularly horrifying. 

‘We have always argued that if these abortions are permitted under law, there should be no attempt whatsoever to hide details of the numbers or justifications.’

A cleft lip and palate is the most common facial birth defect in the UK. There have been 40 terminations for cleft palates since 2002

However, Ann Furedi, chief executive of the British Pregnancy Advisory Service (BPAS), said: ‘The publication of these statistics after a campaign by the anti-abortion lobby reveals little more than their own vindictiveness.

‘Abortion for foetal anomaly is legal. Behind every one of these figures are doctors and nurses who deserve our admiration and support, and a couple who have often lost a much-wanted pregnancy.’

Abortion is legal in the first 24 weeks of pregnancy for disability reasons but also if the pregnancy poses a risk to the mother’s mental health.

After 24 weeks, an abortion is allowed only if there is substantial risk of ‘serious’ physical or mental abnormality, or the woman’s life is in danger.