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Possession, Jinn And Britain’s Backstreet Exorcists

November 19, 2012

UK health and social workers and those in the criminal justice system are increasingly having to understand belief in spiritual possession among ethnic minorities, with new research highlighting a particular issue with some sections of the British Asian community blaming mental health problems on the supernatural.

The exorcist Abou Mohammed sits cross-legged on the floor of a back-room in his home in Ilford, East London. He is surrounded by copies of the Koran, containers of olive oil and a spray-bottle of water which he uses on the Jinn, the supernatural spirits, that he says possess many of his clients.

Mr Mohammed, who goes by the title of Raqi, has a waiting list several months long and charges £60 for a one-hour session.

One of his clients is Mudasar Khan, 41, who says he has been possessed by a Jinn for years. He describes it as something that surrounds his body, buzzing, making him unwell and even stopping him sleeping.

Mr Khan has been on anti-depressants in the past and suffered panic attacks, but he says the Jinn prevented medication from working and that it is only coming to Abou Mohammed that has provided some relief.

“I had to go to the doctors and the hospitals too, to prove it to my family, because if I didn’t do that side of it as well they’d think it was in my head,” he says.

For five years Mr Khan has been treated by Mr Mohammed, who he says summons up the Jinn inside of him and speaks to it directly, easing its effect.

‘Power to cure’

Mr Mohammed knows what he does is controversial – while we are filming his work he also films us, concerned that we will distort what he does – and he says that there are many charlatans in his field.

The exorcist believes some illnesses are unnecessarily dealt with by doctors when they are actually spiritual problems. He even says some people have operations they do not need because the Jinn has tricked doctors.

“I cure them by this book [the Koran]. You have to have a faith in it and it will work. So yes, anxiety, depression, heart problems, many, believe me, many problems get cured by this healing.”

Despite this, Mr Mohammed admits he does have some clients come to him who are seriously ill and need medical attention, particularly those who are mentally unwell.

When 20-year-old Nadeem (whose name we have changed) became ill he and his family thought he had a spiritual problem, that he was also possessed by a Jinn:

“I was at home and I was with my family and their faces looked different to me, my senses changed as well,” he recalls. “I tried to lie down to sleep, but too many things were going through my mind and I felt my head is getting narrowed getting tight. My thinking is big; I’m thinking a lot of things.”

He says that in the night he went down stairs and told his father how he was feeling:

“My parents got worried, they said don’t worry we’ll call a certain guy and he’ll sort it out… so they called a person who’s got the power to control these things and take them out.”

‘Writhing on the floor’

Nadeem’s parents took him to an exorcist for treatment:

“I was physically fidgeting and flinching all over the place. I was on the floor in my house and I was screaming and the Jinn was trying to come out of my mouth,” he says.

Nadeem says he felt better for his treatment, but that he did not recover and was eventually taken to hospital. He is now diagnosed with schizophrenia and takes daily medication.

Cases like Nadeem’s, in which his illness was instantly attributed to possession, are not entirely uncommon and are a cause for concern among mental health professionals.

Professor Swaran Singh, head of the Mental Health and Wellbeing division at Warwick Medical School, has just completed a five year study, funded by the Department of Health, into why patients from ethnic minority backgrounds were often reaching mental health services in a more severely ill state than the rest of the population.

“We found that in the very early stages when people have depression or anxiety, they seek help through their GP because it looks like a psychological problem. When they become seriously unwell, like when they develop delusions or start hearing voices, then the groups diverge.

“The Asian groups, particularly the British Pakistanis, then attribute their problem to a religious cause, for instance, possession by a Jinn. So they seek help through the Imams, through the mosque,” he says.

Among British Asians the belief in evil spirits is not uncommon. It can be concepts like black magic or the evil eye, it can also be that the body can be possessed causing physical harm.

British Muslims in particular are brought up learning of the existence of Jinn in the Koran, though what the Jinn actually are is not universally agreed upon.

Source of blame

Prof Singh says that religious care can bring a great deal of comfort to patients, but it can create serious problems if it is the only help sought:

“An extreme example I can think of was this Sikh gentleman who became ill when he was 18, but the family sought help within the community faith group, and he didn’t come for psychiatric attention for 13 years. By that time a lot of damage has been done from the untreated illness.”

As well as the misdiagnosis of mental health problems there have been other extreme consequences to the attribution of possession. In September this year four members of the same family were found guilty of the murder of 21-year-old Naila Mumtaz in Birmingham.

Birmingham Crown Court was told that Mrs Mumtaz’s in-laws, Zia Ul-Haq and Salma Aslam, who along with her husband Mohammed Mumtaz and brother-in-law Hammad Hassan were convicted of her killing, thought she was possessed by evil spirits.

The trial heard evidence that she was killed as family members attempted to drive out a harmful Jinn spirit.

Naila’s brother Nasir Mehmood believes Jinn was used as a way of “explaining away” the death:

“The thinking behind her in-laws was that they would have the body released, take it back home to Pakistan, and say Jinn did it. Jinn killed her. There’s no reason to explain anything further than that. People are very susceptible to believe that sort of stuff,” he says.

Tony Medhi, a family friend who helped Mr Mehmood through the case, says he is very used to seeing spiritual possession used as a “catch all” for any problems in the British Pakistani community he grew up in:

“The Jinn concept is used to keep society in its place. If somebody isn’t behaving correctly, maybe somebody’s behaviour is very extreme, it could be due to some mental illness, or physical disability or something like that, people will turn around and say ‘it’s Jinn. Jinn has done this to her or him’.”

‘Operating in the shadows’

This has also been the experience of Yasmin Ishaq, a teacher from Rotherham who said she became a healer herself because she saw peoples’ beliefs being exploited:

“If somebody was saying I was being abused, or I’m living in horrific conditions, they would automatically silence them by saying ‘she’s possessed’. I’m talking from personal experiences – family members, neighbours, community members – where women were beaten on the premise that they were possessed when really it was just violence against women.”

“Here today, in 2012, we have men claiming in national newspapers that they can fix all your problems, that they can basically sort out every kind of problem for a price.”

Nazir Afzal, the Chief Crown Prosecutor for the North-West of England, says that “problem” healers are something the police are getting intelligence on.

“We’re becoming more aware of it. I’m actually very pleased we’ve been talking to lots of community groups who want to tackle this themselves,” he says.

However, there is still a long way to go. In the Naila Mumtaz case it is thought that the “healer” was in the room when she died. That person, as has happened in other cases, has never been traced.

“They do operate in the shadows. They are protected by others within their communities, or within their faiths, or within their places of worship. They may leave the country. So it can be very difficult to track down the healers,” Mr Afzal says.

“That said, the police are getting a lot more intelligence from within the community in the hope that we can identify these people before serious harm occurs.”

This is an issue that is not going away. The spiritual care department at East London’s Mental Health Trust, which covers what is now one of the most ethnically diverse parts of the UK, says that their services were established to serve a community where religion was dying out, but that now most of their patients value the spiritual as much as they do science.

Prof Singh argues that education is vital among communities so that these healers do not get in the way of medical care:

“For panic attacks and depression, the current treatment now is not medication, it’s talking therapies, and in some cultures this means talking to a healer, so it may work.”

“It becomes problematic when it becomes an alternative to medical care – so when instead of taking medication, they rely exclusively on religious ceremony or religious procedure. That’s not going to treat the condition, so faith may offer comfort but it doesn’t offer a cure for illness.”

You can listen to Catrin Nye’s full documentary Possession, Jinn and Britain’s Backstreet Exorcists it will also be available online here.

The BBC Newsnight film will be broadcast on Monday 19 November, at 2230GMT on BBC Two, then be available afterwards on the BBC iPlayer.

Timothy Baron

November 19, 2012

In 1961, my parents heard the word “autism” for the first time. It was used by a doctor who was examining my older brother, Timothy. He was a handsome but very troubled five year old with little speech and fixed obsessions. He had frequent screaming tantrums for no obvious reason. According to the doctor, Timothy fitted the diagnosis of autism as described by the American paediatrician Leo Kanner. My brother wasn’t affectionate, he avoided eye contact and had no interest in other children. He was rigid in his routine and when he talked he mainly echoed what others said to him.

Timothy wasn’t obviously mentally retarded, the term used in those days; he completed jigsaw puzzles at lightning speed and never checked the picture. He barely talked but memorised song lyrics perfectly. He couldn’t read but always played his favourite vinyl records in exactly the same order by examining the words on the labels. My big brother was an intimidating mystery to me. As a family we couldn’t go anywhere with him as he hated all new places and would scream, “Time to go home, time to go home, don’t like it!” over and over again.

My dad recalls leaving the doctor’s office with the new words “autism” and “childhood psychosis” ringing in his ears. He sat in the car with my mother, both of them silent, trying to take in what this meant for Timothy, humming in the back seat. Neither was prepared to send him away to the long-stay hospitals for the handicapped, which is what doctors in those days advised. They were convinced that Timothy could learn – he just needed the right kind of teaching.

In a room upstairs in our parents’ house, there were four strange children, including my brother. They had lots of interesting toys, but the room was out of bounds for my sister and me. My parents had found a teacher for my brother, two other boys and a girl, all diagnosed with autism. At first the parents shared the costs, but soon they persuaded the then London County Council that these children could learn and it agreed to pay the teacher.

Looking back, my father thinks this may well have been the first officially recognised classroom in Britain exclusively for autistic children. A crack in the barriers to education had opened. In those days – half a century ago – children with learning difficulties and behavioural disorders had no legal right to schooling.

That little classroom in an upstairs bedroom was just a beginning. My mum and dad found other parents with similar children. Helen Allison, a dynamic American living in London, talked about her autistic son, Joe, on Woman’s Hour on Radio 4, and it led to a flood of calls from parents who recognised their children in her description of Joe’s unusual behaviour. Soon these parents met up. In 1962, 10 of them drafted a manifesto; their aim was to create schools, residential if necessary, and an information and advice service.

At first they called their charity the Society for Psychotic Children, but another parent, the psychiatrist Lorna Wing, suggested that the Society for Autistic Children was better; it was a new word, but less scary than psychotic. After a story appeared in the London Evening News, more parents joined and questions were asked in parliament about autistic children and their right to an education.

Official recognition brought some funding, charity appeals raised more money and in 1965 a house was found in west London. It was converted into the first school for autistic children, run by a wonderful teacher, Sybil Elgar. The Beatles came to visit and spent an afternoon there, playing with the children; John Lennon gave the society a cheque for £1,000 and autographed the only thing my mum had to hand, a box of liquorice toffees.

The Sybil Elgar school is still going today, though it has moved and expanded over the years. The Society for Autistic Children became the National Autistic Society in 1982. It has grown beyond recognition, from 10 parent members in 1962 to more than 20,000 today. It now employs more than 3,000 people in its seven schools, residential and training services for autistic adults and families. It still campaigns, but these days, it’s not just parent-run, and has autistic adults on its council too with their own agenda.

Fifty years on, a handful of the pioneering parents survive; their children are now middle-aged. My father, 83, often looks back and says how no one could have predicted the future for that first generation of children. They seemed so similar when young, but are so different now. One of them has had his own business and was married for a while but struggles with obsessions and maintaining friendships – he is aware of his autism and finds it frustrating. By comparison, my brother doesn’t seem to know what he is missing. These days he is very calm and easy to get along with, totally different from the aggressive and angry boy he once was.

Autistic people are often defined as high-functioning (with normal IQs and good language abilities) or low-functioning, like my brother, whose IQ is harder to assess. Autism experts and paediatricians often encourage parents to believe that lifetime outcomes are better for the high-functioning; and certainly many achieve more academically and, with the right accommodations, live a good life.

It’s not automatically the case that they are happier than someone such as Timothy. He is happy when people are kind and predictable and he has the things around him that he enjoys – such as going to a day centre with art, dancing and music activities, eating roast chicken and ice cream. He’s still a demon when it comes to jigsaws. My dad has never got over the sadness of not having a real conversation with him, but he doesn’t think that Timothy is the tormented soul that he was as a boy.

Quite a few of the original children from the Sybil Elgar school now live at Somerset Court, near Brent Knoll, with its own farm. It was set up when they were reaching 18 in 1974. One of the founding parents, Gerald de Groot, now 80, still takes a keen interest – it’s where his son Mark lives. He has campaigned to have the accommodation improved and to stop overcrowding. Before the 2008 crash, he helped to raise funding for new buildings. All the residents now have en-suite bedrooms and some live in their own flats – “I hope Mark can stay indefinitely. He is 52 now, and a creature of habit. He is happy, and he loves things to stay the same.”

It’s a similar story for Susie, the one girl in that little classroom in my parents’ house. She also lives at Somerset Court. She still doesn’t speak, but is an excellent weaver, sings beautifully and is happy and calm in comparison with the hyperactive child that she once was. Her mum told me, “You just have to accept them for who they are. If you want children, you can’t say, ‘Oh, I didn’t mean someone like this!’ You have to get on and do the best by them. We were so lucky that your dad and the other parents worked so hard to set up the school and Somerset Court. I’m so glad that I don’t have to worry about Susie.”

Some of that first generation live in small group homes and some live independently. About 18% of people with autism over 45 still live with their families. Another Sybil Elgar school graduate, the artist David Braunsberg, lives with his mother. He loves his work, supporting refugees at a drop-in centre. David is high-functioning and talks fluently about what it’s like to have autism. He can get depressed and anxious as he is extremely sensitive to the attitudes of people around him and vulnerable to bullying. But in the right company, David thrives and makes beautiful etchings and silk paintings, which he exhibits and sells through his website.

Mandy, another girl with autism from David’s class, grew up to marry a Dane with high-functioning autism. They had a son together, who was not on the autism spectrum and managed their family with neighbourly support. Sadly, a few others have died too young, from the effects of severe epilepsy (which often goes along with autism) or from other health problems that are sometimes triggered by the condition.

At a grand party held to celebrate the 50th anniversary of the National Autistic Society, in a room crowded with people with autism and their families, I asked my father and Gerald de Groot if they had ever imagined such an occasion when they started the charity. My dad said that they thought it would only be necessary for a few years. In the 1960s he’d believed that, as autism became more recognised, the state would provide the right schools and information for parents. De Groot is surprised that scientists still don’t know what causes autism, although professionals are much better at recognising it today. When his son Mark was diagnosed in the 1960s, autism was thought to be very rare, affecting only four children per 10,000; today the rate is around one in 100.

Arguments rage about whether there is an actual increase or whether we now call people autistic who, in the past, would have been given other labels: eccentric, loner, mentally handicapped, antisocial, educationally subnormal and worse … Certainly, when Lorna Wing formulated the idea that autism was a spectrum, with degrees of impact, it led to an increase in the numbers of children and adults being diagnosed.

While scientists and the media debate whether something “out there” is causing autism rates to rise, or whether it’s just awareness, not incidence, that is increasing, one issue that always worries parents is ignored. What happens when they are no longer around to look out for their children? What happens to people with autism as they age? One of my brother’s peers was recently diagnosed with dementia in his early 50s. The staff at Somerset Court are working out how to keep him safe and happy.

No one knows whether dementia affects autistic people more than the general population – it’s well documented that people with Down’s syndrome are at higher risk of early onset dementia. But there is hardly any research on how the autistic brain changes in adulthood, or planning for how and where autistic older people should live.

The energy that drove my dad to start the first school still drives him; he looks at my brother and wonders what’s happening inside his head and what his future holds. He worries about Timothy and his peers’ old age in an era of cuts to social and medical care, knowing that even in the good times, the elderly and people with learning disabilities are so very vulnerable.

• National Autistic Society, autism.org.uk

Paralysed Pet Dogs Walk Again After Nose Cell Transplant

November 19, 2012

Scientists have reversed paralysis in dogs after injecting them with cells grown from the lining of their nose.

The pets had all suffered spinal injuries which prevented them from using their back legs.

The Cambridge University team is cautiously optimistic the technique could eventually have a role in the treatment of human patients.

The study is the first to test the transplant in “real-life” injuries rather than laboratory animals.

In the study, funded by the Medical Research Council and published in the neurology journal Brain, the dogs had olfactory ensheathing cells from the lining of their nose removed.

These were grown and expanded for several weeks in the laboratory.

Treadmill

Of 34 pet dogs on the proof of concept trial, 23 had the cells transplanted into the injury site – the rest were injected with a neutral fluid.

Many of the dogs that received the transplant showed considerable improvement and were able to walk on a treadmill with the support of a harness.

None of the control group regained use of its back legs.

The research was a collaboration between the MRC’s Regenerative Medicine Centre and Cambridge University’s Veterinary School.

Professor Robin Franklin, a regeneration biologist at the Wellcome Trust-MRC Stem Cell Institute and report co-author, said: ‘Our findings are extremely exciting because they show for the first time that transplanting these types of cell into a severely damaged spinal cord can bring about significant improvement.

“We’re confident that the technique might be able to restore at least a small amount of movement in human patients with spinal cord injuries but that’s a long way from saying they might be able to regain all lost function. ‘

Prof Franklin said the procedure might be used alongside drug treatments to promote nerve fibre regeneration and bioengineering to substitute damaged neural networks.

Partial repair

The researchers say the transplanted cells regenerated nerve fibres across the damaged region of the spinal cord. This enabled the dogs to regain the use of their back legs and coordinate movement with their front limbs.

The new nerve connections did not occur over the long distances required to connect the brain to the spinal cord. The MRC scientists say in humans this would be vital for spinal injury patients who had lost sexual function and bowel and bladder control.

Prof Geoffrey Raisman, chair of Neural Regeneration at University College London, who discovered olfactory ensheathing cells in 1985 said: “This is not a cure for spinal cord injury in humans – that could still be a long way off. But this is the most encouraging advance for some years and is a significant step on the road towards it.”

He said the clinical benefits were still limited: “This procedure has enabled an injured dog to step with its hind legs, but the much harder range of higher functions lost in spinal cord injury – hand function, bladder function, temperature regulation, for example – are yet more complicated and still a long way away.”

Jasper, a 10-year-old dachshund, is one of the dogs which took part in the trial.

His owner May Hay told me: “Before the treatment we used to have to wheel Jasper round on a trolley because his back legs were useless. Now he whizzes around the house and garden and is able to keep up with the other dogs. It’s wonderful.”

Casualty, Morquio Syndrome And Incest

November 18, 2012

This is a guest post by Matthew Smith. It was originally posted here earlier today.

Yet again, Casualty gets the medical facts wrong in one of their plotlines. This time the condition involved was Morquio syndrome (pronounced Morkio), a genetic disorder which results in dwarfism, spinal defects and visual impairment. The condition is recessive and both parents have to carry the gene for the child to have the condition, but Casualty extrapolated from that to imply that the parents were usually related, and in this story the parents turned out to be brother and sister and not know it.

The story was that a couple was caught in a car accident with their son, and suffered a couple of broken bones each (the accident was caused by a drunk driver, a footballer who had just forcibly ejected his girlfriend from his car, then drove back and crashed when he saw an ambulance tending to her; he suffered a spinal cord injury which was exacerbated by his refusal to have his neck immobilised). A young doctor noticed some symptoms of Morquio’s syndrome on the child, including clouding of the cornea, and told his colleague that in every case he had seen, the parents were related and thus they would have to break the news very carefully. When they told the couple that both parents had to have the gene for the child to have Morquio’s, both of the parents were offended, as if that fact automatically meant that they must be somehow related, something that they had no reason to think was the case as they came from different parts of the country. However, further inquiries revealed that the couple were in fact brother and sister.

Although conditions inherited this way (called autosomal recessive traits) are more common in children of consanguineous marriages, such as between cousins (and a couple from the same village may well be distant cousins — rarely first or second cousins in this country, although such marriages are fairly common among South Asians), they do in fact occur in families in which there is no known relationship and Morquio’s occurs in children from families with no known history of it — the coming together of two carriers of the trait was a coincidence beyond their control. The suggestion that the condition must be to do with inbreeding is obviously hurtful to families of children with Morquio’s (and adults with it) and exposes families and children to false assumptions and bullying. I also found it extremely odd that everyone assumed that the son’s condition meant that the parents had to be closely related, rather than the more likely scenarios of coincidence or them merely being distant cousins, and staff began to think up ways in which a brother and sister could become a couple.

Casualty and Holby City have a history of playing fast and loose with medical facts — I have been following both for several years and have noticed two storylines during that time which contain serious errors about the facts of a condition which could be offensive to people affected by it. (Previous examples were the guy who apparently had ME but beat his wife, and the girl with the skin disorder Epidermolysis Bullosa who was offered a bone-marrow transplant as an apparent cure, which is in fact an early experimental treatment for a different form of EB to hers.) I complained about the ME story, and was given the excuse that “drama productions … aren’t always best served by meticulous attention to detail and accuracy”. Surely they could afford the services of some sort of medical expert they could run stories by to make sure they don’t make glaring errors with medical facts?

Vanderbilt Exoskeleton promises more independence for paraplegics

November 18, 2012

This is a guest post by Joseph Hill.

Until recently the thought of a wearable robot only came to mind when thinking of films such as Avatar or Matrix, but thanks to major advances in robotics, batteries, electric motors and microelectronics they are now a reality. A team of engineers at Vanderbilt University have recently developed an exoskeleton which allows people paralyzed below the waist, who thought they would never take another step, to walk again.

The exoskeleton provides its users with an unprecedented degree of independence which may have been absent due to their paraplegia or spinal injury. According to the National Spinal Cord Injury Statistical Centre, somewhere between 236,000 and 327000 people in the US are living with serious spinal cord injuries and around 155,000 have paraplegia. The exoskeleton’s lightweight and compact size enables this minority to stand, walk, sit and climb stairs, things that most of us take for granted.

The device straps securely around the torso for stability and then rigid supports are strapped to the legs, above and below the knee. The hip and knee joints are computer-controlled by electric motors which are powered by advanced batteries. The user is advised to use forearm crutches with the device to maintain balance.

 

“You can think of our exoskeleton as a Segway with legs,” said Michael Goldfarb, designer and professor of physical medicine and rehabilitation at Vanderbilt University. “If the person wearing it leans forward, he moves forward. If he leans back and holds that position for a few seconds, he sits down. When he is sitting down, if he leans forward and holds that position for a few seconds, then he stands up.”

 

Although exoskeletons have already been developed to help people walk, Goldfarb’s skeleton is completely unique and he has several patents pending for his designs. So why is this exoskeleton unique? Not only does it give independence to the paralyzed to walk, but Goldfarb has integrated functional electrical stimulation (FES) technology into the design. FES applies small electrical pulses to paralyzed muscles, causing them to contract and relax. This not only helps the device when walking but for complete paraplegics, it can improve circulation, reduce muscle atrophy and change bone density. The amount of robotic assistance also adjusts automatically for users who have some muscle control in their legs which is another unique addition. This allows them to use their own muscles while walking to strengthen their legs and get vital exercise which is extremely useful from a rehabilitation perspective.

Brain Shaffer, who was involved in a car accident around Christmas 2010, leaving him paralysed from the waist down, has been testing the apparatus at the Sheppard centre in Atlanta. “My kids have started calling me ‘Ironman’” said Shaffer.

“It’s unbelievable to stand up again. It takes concentration to use it at first but, once you catch on, it’s not that hard: The device does all the work. I don’t expect that it will completely replace the wheelchair, but there are some situations, like walking your daughter down the aisle at her wedding or sitting in the bleachers watching your son play football, where it will be priceless.”

The exoskeleton weighs about 27 pounds, which is about half of the weight of other models which weigh approximately 45-50 pounds. The price is also rumoured to be lower than competitors although the product is not fully commercial yet and the pricing has not been finalised. The price tags of other models have been as high as $140,000. Goldfarb is hopeful that its minimalist design combined with Parker Hannifin’s manufacturing capability will effectively keep the cost down and make it more of an affordable product.

Joseph Hill writes on behalf of Pannone Personal Injury documenting research into disability and assistive technology.

Look For Work Or Lose Benefits, Sick And Disabled People Told

November 17, 2012

Currently an estimated 700,000 people apply for sickness benefit each year but are not required prepare themselves for returning to employment until they receive an official work capability assessment after three months.

More than 300,000 stopped claiming the benefit before they were assessed last year, according to the Department for Work and Pensions.

But under plans to be introduced from 2013, anyone claiming Employment and Support Allowance because they are ill will face sanctions if they do not take steps to prepare for work.

They will be expected to maintain regular contact with Jobcentres and to look for employment opportunities while awaiting the assessment of their fitness for work.

The new arrangements, being incorporated into Iain Duncan Smith’s flagship Universal Credit welfare programme, will be seen by critics as another assault on state support for the sick and disabled.

However, officials insisted that it was necessary to bring sickness benefits into line with reforms to place conditions on benefits for people who are out of work.

The DWP said anyone claiming ESA under the new system would be given “immediate support to help them return to work” as soon as they are able, warning that long periods of unemployment can cause significant damage to long term careers.

Minister for Welfare Reform Lord Freud said: “The overall aim of our welfare reforms is to ensure that people who can work get the support they need to find a job. This simple step will give people access to employment support months sooner than under the current system, so that the time spent waiting for a sickness assessment is not wasted.

“Individuals who are too ill to work will not be forced into a job, but for the first time, we will work with them to help them get a job when they are ready.”

Last year, ministers commissioned a major review of sickness absence, which costs the economy 140 million work days each year.

An estimated 700,000 people applied for the benefit, but only 389,000 were still in the system three months later to undergo a work capability assessment.

Many drop out of the benefit before the assessment and return to work because they have recovered.

More than half of claimants are found fit for work when the assessment takes place, often because their condition has improved since they first applied three months earlier.

A further 20 per cent are found capable of taking “steps into work” in the future with the proper support.

Work capability assessments have been highly controversial since they were first piloted under Labour in 2008 and later rolled out across the country under the coalition.

Critics claim the tests have been skewed towards forcing people back to work and the results have been challenged by thousands of disabled people.

Pudsey Bear’s WCA

November 16, 2012

As a celebration of Children In Need, I gave Pudsey Bear a WCA.

Pudsey Bear’s WCA

Here’s what happened when Pudsey, the disabled bear, went for a Work Capability Assessment to the offices of ATOS.

ATOS Worker: Hello, please sit down.

(Pudsey sits, looking confused)

ATOS Worker: So, he can sit independently. How are you today?

Pudsey: Good, thank you.

ATOS Worker: Hold your arms out, turn your hands over. Straighten your fingers.

Pudsey: I don’t have hands, or fingers.

ATOS Worker: Hmmm…  stand up on your tiptoes.

Pudsey: I don’t have toes… or feet.

ATOS Worker: Hmm… please remove that horrible scarf from across your face. Open your right eye.

Pudsey: It’s not a scarf, it’s an eye patch. And I don’t have a right eye. One of the children pulled it off. That’s why I had to stop working. I’m partially sighted.

ATOS Worker: Children? You have children? You’re not disabled! Disabled people can’t have CHILDREN!

Pudsey: They’re not my children… I’m a charity mascot… they’re the children I help.

ATOS Worker: A charity mascot? So, you already have a job.  Disability benefit fraud… well well well.

Pudsey: But I’m a partially sighted teddy bear with no fingers, hands, toes or feet…

ATOS Worker: Well, Mr Pudsey, if you’re fit to be in the same room as children, you’re fit to work. Close the door on your way out. NEXT!   

 

IDS Measures Poverty By Birth Parents

November 16, 2012

If you follow me on Twitter, you may have seen my Tweets yesterday about Iain Duncan Smith’s plans to measure child poverty by how long a child has two birth parents looking after them.

I wrote these up, and today Independent Voices have very kindly published the result.

Bell’s Palsy: “I Miss My Smile”

November 16, 2012

About 100,000 people in the UK have Bell’s palsy, where half the face is paralysed causing an inability to fully smile, blink one eye or raise one eyebrow.

A charity is being launched to support sufferers and raise awareness.

Consultant Ahmed Sadiq, who specialises in helping people with Bell’s palsy, explains the condition in more detail, and Amanda Taylor describes how the condition has affected her everyday life.

Footballer, 14, With Tourettes Fined And Banned For Swearing During Match

November 15, 2012

The Effect- A Play About Love And Depression

November 15, 2012

The BBC today has rounded up reviews of The Effect, a new play set in a modern medical facility where new anti-depressant drugs are being tested.

The central characters, two volunteers, fall in love as the doctors up the dosage. But they wonder whether their love is real, or a side effect of the drugs.

Michael Gove’s Redundancy Plans To Hit Disabled And Ethnic Minority Workers

November 15, 2012

Radical plans by Michael Gove to cut the Department for Education in half will result in a disproportionate number of redundancies among minority ethnic, disabled and older staff, leaked documents show.

An internal review of 3,781 departmental staff – which has been handed to the Guardian – shows that one in eight workers define themselves as black or from an ethnic minority. But more than one in three workers described as putting in an unsatisfactory performance are non-white and likely to be sacked. Nearly 15% of staff identified by managers as underperforming have a disability, while only 6% of all staff are registered as disabled.

Civil servants who are over 50 are less likely to receive a performance award and more likely to receive an unsatisfactory rating, the report concludes.

The disclosures have emerged as the education secretary plans to make 1,000 career civil servants redundant within two years. According to the proposals, low performers will be “speedily managed out”.

The leaked “performance management equalities review”, conducted in April and released to senior managers last month, provides equalities data for all staff across the department. It examines the background of departmental staff from the lowest-grade workers, paid around £20,000 as executive assistants, up to grade-six civil servants such as deputy directors who are paid more than £70,000 a year, and compares each worker with their annual performance review. It includes staff in Whitehall as well as nine regional offices.

Under “Issues to note”, the report states: “Black and minority ethnic staff are less likely to receive a performance reward and more likely to receive an unsatisfactory rating.”

According to the figures, 60% of staff – 2,285 – described themselves as white compared with 12%, or 443, who described themselves as black or minority ethnic. More than 1,000 staff did not declare their racial background. But of the 42 staff whose performance is described as “unsatisfactory” and who declare their ethnicity, 24 are white while 18 are black or from a minority ethnic background.

Around 214 civil servants – or 6% of staff – described themselves as disabled, while 1,882, or 50%, said they were able-bodied. Nearly 45% did not declare. But 14.7% of staff labelled as giving an unsatisfactory performance are registered as disabled.

The report also shows that 35% of all staff described by managers as poor workers are over the age of 50.

Union officials fear that it will be minority employees who will be expected to lose their jobs in a redundancies programme.

Mark Serwotka, general secretary of the PCS union, which represents civil servants, said the disclosures showed that minorities would be hit hardest by Gove’s plans. “While the education secretary, Michael Gove, is busy playing politics with people’s lives and the education of our children, workers could face the sack as a direct result of a discriminatory performance management system. We believe this system should be scrapped immediately,” he said.

Gove plans to reduce the department’s running costs with cuts to the department’s total workforce. Almost a third of the remaining staff will switch between teams on time-limited projects. If successful, the plans could be rolled out across other departments. Six regional offices are to be shut: Darlington, Runcorn, Bristol, Guildford, Histon and Nottingham.

Gove is reported to have won approval from cabinet colleagues to test more radical changes after voicing frustration at the limited scope of Whitehall-wide reforms announced in June.

The Department of Education said: “In common with other organisations, this is a challenge that we have already taken steps to address. We have brought in new performance management policies and we are actively monitoring outcomes to identify where further support or training is needed.”

Blue Badge Style

November 14, 2012

With thanks for info to Society Guardian.

  • Blue Badge Style, a new app for disabled people “who seek out the coolest establishments that are accessible for less-able bodied people”. The Blue Badge Style website was launched in 2007 by Fiona Jarvis, a woman living with MS, with the aim of creating “a community of like-minded people for whom style and disability are not mutually exclusive”. Now she is launching an app for iPhone, Android and BlackBerry phones and iPads, which enables users to find and rate the coolest accessible venues – including restaurants, bars, shops, cafes, theatres – in the UK and major European cities. Jarvis said:

Mobility, or the lack of it, doesn’t mean that I’ve lost my sense of style, but I do want to know what to expect before I arrive at a venue. The Blue Badge Style app means that people with limited mobility and equally importantly, their friends, don’t have to be surprised or embarrassed by a lack of accessibility or facilities at a cool venue.

Baroness Jane Campbell Set To Make History In House Of Lords

November 14, 2012

Update 7pm: Details here.

Storify Of Mencap’s #adinclusion Chat

November 14, 2012

Samuel Comroe, Stand Up Comedian With Tourettes, On Conan

November 14, 2012

I’ve been sent this video clip from last night’s show by the people at Conan because Samuel Comroe, up and coming stand up comedian with Tourettes, did a short set. Apparently he won a competition started by Ricky Gervais.

Cancer Scam Mother Jailed For 3 Years 9 Months

November 13, 2012

Good.

A mother from Gloucestershire who pretended her son had cancer in order to claim benefits has been jailed.

The woman, who cannot be named, kept up the pretence for three years while the boy was aged between four and seven, a court heard.

She admitted one count of child cruelty, eight counts of fraud and one of forgery by faking doctors’ letters.

The 36-year-old woman from the Stroud area was jailed for three years and nine months at Gloucester Crown Court.

The court heard she shaved his hair and eyebrows to mimic the effects of chemotherapy and claimed tens of thousands of pounds in benefits.

These included disability living allowance and carers’ allowance, as well as child tax credits, by falsely saying her children were living with her.

Molly Grove, 3, Returns From SDR Operation

November 13, 2012

A Worcestershire girl who was flown to the United States for an operation to help her walk has arrived home.

Three-year-old Molly Grove, from Broadway, has spastic diplegia cerebral palsy which caused a painful tightening in her legs.

More than £64,000 was raised for the £50,000 operation at the St Louis Children’s Hospital in Missouri and two years of physiotherapy.

Molly and her mother got back on Monday after several weeks in the US.

Her father Richard Grove said Molly suffered brain damage caused by lack of oxygen at birth which means her muscles get over stimulated.

The three-hour operation last month severed the nerves responsible for over-stimulating those muscles.

Mr Grove said Molly would now have to undergo two years of intense physiotherapy.

He said: “She’ll have to do swimming, stretching, treadmill work – anything to build those muscles up to get here strong and help her walk.

“We can see so many differences, after the operation she was so weak and unable to do very much at all – she was like a floppy doll.

“But we’re so pleased to be back together as a family, it’s like an early Christmas present.”

Canadian Man In Vegetative State Communicates That He Is Not In Any Pain

November 13, 2012

A Canadian man who was believed to have been in a vegetative state for more than a decade, has been able to tell scientists that he is not in any pain.

It’s the first time an uncommunicative, severely brain-injured patient has been able to give answers clinically relevant to their care.

Scott Routley, 39, was asked questions while having his brain activity scanned in an fMRI machine.

His doctor says the discovery means medical textbooks will need rewriting.

Vegetative patients emerge from a coma into a condition where they have periods awake, with their eyes open, but have no perception of themselves or the outside world.

Mr Routley suffered a severe brain injury in a car accident 12 years ago.

None of his physical assessments since then have shown any sign of awareness, or ability to communicate.

But the British neuroscientist Prof Adrian Owen – who led the team at the Brain and Mind Institute, University of Western Ontario – said Mr Routley was clearly not vegetative.

“Scott has been able to show he has a conscious, thinking mind. We have scanned him several times and his pattern of brain activity shows he is clearly choosing to answer our questions. We believe he knows who and where he is.”

Prof Owen said it was a groundbreaking moment.

“Asking a patient something important to them has been our aim for many years. In future we could ask what we could do to improve their quality of life. It could be simple things like the entertainment we provide or the times of day they are washed and fed.”

Scott Routley’s parents say they always thought he was conscious and could communicate by lifting a thumb or moving his eyes. But this has never been accepted by medical staff.

Prof Bryan Young at University Hospital, London – Mr Routley’s neurologist for a decade – said the scan results overturned all the behavioural assessments that had been made over the years.

“I was impressed and amazed that he was able to show these cognitive responses. He had the clinical picture of a typical vegetative patient and showed no spontaneous movements that looked meaningful.”

Observational assessments of Mr Routley since he responded in the scanner have continued to suggest he is vegetative. Prof Young said medical textbooks would need to be updated to include Prof Owen’s techniques.

The BBC’s Panorama programme followed several vegetative and minimally-conscious patients in Britain and Canada for more than a year.

Another Canadian patient, Steven Graham, was able to demonstrate that he had laid down new memories since his brain injury. Mr Graham answers yes when asked whether his sister has a daughter. His niece was born after his car accident five years ago.

The Panorama team also followed three patients at the Royal Hospital for Neuro-disability (RHN) in Putney, which specialises in the rehabilitation of brain-injured patients.

It collaborates with a team of Cambridge University neuroscientists at the Wolfson Brain Imaging Centre at Addenbrooke’s hospital, Cambridge.

One of the patients is diagnosed as vegetative by the RHN, and he is also unable to show awareness in an fMRI machine.

A second patient, who was not able to be fully assessed by the RHN because of repeated sickness, is later shown to have some limited awareness in brain scans.

Disabled Children Need Disabled Teachers

November 13, 2012

Three groups of students gather in huddles to discuss how best to express the “before” and “after” effects of an evening out in a nightclub. As 14-year-olds, they may not yet have first-hand experience, but they know that alcohol, drugs and cigarettes play a major role in young people’s social lives.

Their drama teacher, Tom Kent, moves from group to group observing their discussions. He watches because he cannot hear. An interpreter signs to him what the students are saying, and then makes suggestions and comments back to the students on his behalf.

Kent is profoundly deaf, but he misses nothing. When a couple of girls start to chatter and giggle, he notices straight away and steers them back to the task in hand.

Angmering school, in Littlehampton, West Sussex, took a bit of a risk having Kent as a student teacher on placement. “I was open-minded, but unsure,” says Lianne Allison, the assistant head. “I needed to see him interact with the students first. He came and did a trial lesson. He was outstanding, making sure he had eye contact and using his face and body to express himself. The students responded brilliantly.”

Kent, 30, is one of relatively few disabled people currently training to be a teacher in this country. According to figures from the Department for Education, less than 1% of the teaching workforce has a disability. But the statistics are unreliable as not everyone admits to being disabled when completing forms and questionnaires.

Those numbers are likely to fall further. As school budgets decline, the costs of employing disabled staff and making building modifications and equipment available may prove too great for many schools, depriving pupils – both those with special needs and the able-bodied – of important role models.

Having worked for several years as an unqualified teacher at Hamilton Lodge, a school and college for deaf children in Brighton, Kent decided to formalise his experience by gaining a teaching qualification and is now on the graduate teaching programme at the University of Sussex.

“Some teacher training institutions didn’t want to take me because they didn’t think I’d fit in,” he says through his interpreter, Diana Bailey, “but Sussex gave me the opportunity. It’s a bit of a challenge teaching in a mainstream school where virtually everyone can hear and I think some of the pupils have been thrown by the fact that I have an interpreter who is my voice, but they are getting used to it. I’m teaching them some sign language.”

Today’s lesson is examining health issues and the implications of a night out getting out of hand. Pupil Joe Cooper, aged 13, says he had not known what to expect being taught by a deaf teacher. “When I first found out, I imagined he would come in with a huge hearing aid, but I didn’t expect him not to speak at all and to have an interpreter,” he says.

“I thought the class was very calm and settled because we had to concentrate on him and what the interpreter was saying. It was a bit weird at first and it slows the lesson down a bit, but we’re going to get used to it. It’s really cool that he’s teaching us.”

Kent’s interpreters on school placements and at university, and his note-takers for lectures, are being paid for out of Access to Work funding and his Disabled Students’ Allowance. The cost is an estimated £60,000 for the duration of his training year, but the university says that if the money runs out, provision will be made to enable him to complete his course.

Another concern he faces is the skills tests that all trainee teachers have to take, which include verbal reasoning. “My first language is British Sign Language not English, so I am extremely concerned about what provision will be made for me to take these tests and not be disadvantaged,” he says.

Kent’s lecturers estimate he will need about 50% more time to complete the test than able-bodied candidates and are currently negotiating with the Teaching Agency over how to resolve the problem. “I would not want to get this far and, having been told that I have the skills to teach, then find I am failed on those tests,” Kent says. A DfE spokeswoman said special arrangements were already in place for candidates with hearing impairments.

Prof Rita Egan, a retired teacher-trainer in ICT PGCE at the University of Bedfordshire, and a wheelchair user, said neither schools nor the teacher training system were equipped for teachers with disabilities.

Egan, who submitted written evidence to a Commons select committee inquiry on the training of teachers three years ago, said successive governments had not encouraged disabled people to apply to teach, which had led to thousands of highly qualified and able candidates not considering teaching as a career option.

“New schools are built to accommodate disabled pupils, but not teachers. So, you might get larger classrooms for wheelchairs, and specialist equipment for the sight and hearing impaired, but the teacher may still be perched on a podium they can’t climb up,” she says. “Tiered ICT suites look good, but are useless for disabled people.”

She has known disabled students give up teacher training in frustration. “One trainee quit while on teacher placement because she could not get around the school in her wheelchair,” she says. “She struggled on for a while, but eventually became completely disillusioned and realised it would probably be the same wherever she taught.”

In another case, she says, a disabled teacher was paid off from her job because this was cheaper than the school spending tens of thousands of pounds adapting it and buying in the specialist equipment she needed. And just as pupils who are disabled need a support worker to accompany them, so do teachers. Many schools simply don’t provide them.

Jill Saunders, senior tutor at the school of creative industries at Petroc, the further education college in south-west England, says the challenges for disabled employees are the same in colleges. She has recently been part of a team that drew up a national strategy for schools and further education colleges on best practice in the recruitment and employment of disabled people.

She says: “I have no doubt that disabled people are put off from working in education because of the lack of thought given to their needs. Sometimes it’s the small things that are important; for example, making sure people have a parking space close to the building.

“Otherwise, you end up constantly on the phone complaining, which makes you feel needy. No one wants that. Every senior leader should spend a week in a wheelchair or blindfolded so they realise what living with a disability is like.”

Meanwhile, Tom Kent plans to return to Hamilton Lodge, where he was once a pupil, to teach deaf children. “It’s very important for children with disabilities to have positive role models,” he says, though he has relished the experience of a mainstream school.

It is disappointing news for Vicky Scales, Kent’s mentor at Angmering. “I’d give him a job in a heart-beat,” she says. “Tom cannot teach aspects of drama relating to music or voice, but in every other respect he is an outstanding teacher and our pupils would benefit hugely from having him around.”

Heather Mills’ 2014 Paralympic Dreams

November 12, 2012

Since marrying Sir Paul McCartney in 2002, the name of Heather Mills has never been far from the headlines.

She has been involved in a decade of charity campaigning, a protracted divorce from the former Beatle, being called to give evidence to the Leveson Inquiry investigating allegations of newspaper phone hacking, not to mention appearances on both Dancing on Ice and the American version of Strictly Come Dancing.

When it was announced in late 2010 that Mills – who had her left leg amputated below the knee after a collision with a police motorbike in 1993 – was attempting to qualify for the British skiing team at the 2014 Paralympics in Russia, some greeted the news with a degree of scepticism.

A publicity stunt? After two years of extreme learning – including countless broken limbs and ligaments, but also five second-tier race victories – she would argue otherwise.

“I basically said, if I’m going to do this, I’m going to do this properly,” Mills, who has bases in Austria and the UK, told BBC Sport.

“Being older is normally a handicap usually as far as physically is concerned, but mentally you tend to be much stronger because you realise that this [being an athlete] is just a privilege.”

The 44-year-old spends half of each month training in the Alps. When in England, she endures six-hour round trips from her home to train at the Milton Keynes indoor snow zone.

It is a level of commitment which has impressed many in the British set-up.

“We don’t want to take people just to wear the jacket, we are trying to set the standard and achieve a medal, but Heather has every chance,” Snowsport UK  chief executive Fiona Young told BBC Sport.

“Heather is going to find it tough, but she’s very focused and also she’s in a very privileged position in that she doesn’t have to worry about the funding so much.”

Following the end of her marriage to McCartney, Mills received a £24.3m settlement. She has been able to use these resources to enlist the help of numerous former skiers, including the previous world speed record holder John Clark.

And Mills’s journey from recreational skier to one of Paralympic potential would perhaps not have started without a random meeting.

“I was on holiday in Austria, it was really early in the morning and they’d opened the lifts for the racers and one slope was empty so I just kept going straight down,” said the charity campaigner.

“I hadn’t skied properly for 10 years, but the head of the Slovenian Masters said, ‘You know you’re doing 100kph (62mph) on slalom skis and that’s very dangerous?’

Mills added: “I didn’t even know what the skis were because I’d just rented them from the shop, but he said to come and join them.”

That led to a trial with the British disability skiing team in December 2010 and she officially joined the 19-strong development squad last year.

But despite her impressive speed, Mills’s progress was hampered by difficulties with her prosthetic leg, which frequently “ejected” her from her skis.

In May 2011 she had to be airlifted to hospital  after colliding with a pole during training and fracturing her shoulder.

Then, just six months later, she injured her partly amputated left leg and broke her thumb.

“I was a little bit concerned because when I went into it [training], the leg kept coming off,” said Mills, “but now the London Prosthetics Centre has helped design a new one.”

“It means it cuts the circulation off for two minutes from the start to the finish of the course before I release it. But it actually stays on so, fingers crossed, no more injuries!”

As a leg amputee Mills is eligible to compete on a monoski, however due to the metal plates which were inserted into her pelvis after her accident in 1993, medical experts have advised against this move.

It has not significantly hampered her prospects on the slopes, though, as she claimed the Super-G Austria Cup title in the speed race nine months ago.

Four gold medals  followed in April at the US Adaptive Alpine Skiing National Championships in Aspen, Colorado.

“It’s not great because I love skiing on one ski. It’s so much fun and so much easier, but I’ve got to do it [compete on two skis] and finally the leg has been sorted,” reflected Mills.

“When I won the medals it gave me a lot of confidence – it’s brilliant.”

The improvements will have to continue throughout the next 16 months if Mills is to attain a place at the Paralympics in March 2014.

All new athletes enter disability skiing with an International Paralympic Committee Alpine Ski  [IPCAS] score of 990, which is reduced through Europa Cup and World Cup finishes.

Despite injury problems limiting her competitive appearances, Mills has decreased her Super-G score to 311.94, with 582.91 for downhill.

Athletes need to reach a score of 220 to be eligible for the Games.

But, owing to a lack of funds, Great Britain will only take skiers to Sochi who are considered “genuine medal prospects” and therefore set their standard at 80 IPCAS points.

In order to improve her chances, British coaches have insisted Mills works on her technique and have requested she enters additional slalom races.

“It’s going to put my injury risk up even more,” she said.

“I’m going to try it and then hopefully convince them otherwise to say ‘Do you want some medals in speed, or absolutely zilch at Sochi?’ so we’ll see.

“I’m quite a good dancer so eventually I may be able to skirt around the slalom gates, so watch this space!”

Mills next competes in Pitztal, Austria, on 8-9 December.

Paul Carter Tests Properties For Wheelchair Access

November 12, 2012

Paul Carter, a journalist and wheelchair user, goes undercover to highlight the issue of estate agents being ‘oblivious’ to the practical issues around disabled living.

He called a number of estate agents in Bath asking if they had any flats with wheelchair access for rent.

Even though the estate agents told him the properties would be fine for a wheelchair user, only one out of five was suitable.

BBC Inside Out West is broadcast on Monday, 12 November on BBC One at 19:30 GMT and nationwide on the iPlayer for seven days thereafter.

New report highlights failures of Work Capability Assessment as Spartacus campaign awaits Harrington’s final review #realwca

November 12, 2012

A new report from the Spartacus campaign today (Monday 12 November) analyses the failures of the Government’s Work Capability Assessment and the Employment & Support Allowance system, which is supposed to support people who are too sick or disabled to work.

It also warns that disabled people are at risk because of the government’s refusal to consider a ‘real world’ test – where part of the test would take into account the real barriers to employment.

The report, ‘The People’s Review of the Work Capability Assessment’, includes examples of people who have been told they are fit for work, including:

  • Someone with no short term memory mechanism
  • A man with a terminal brain tumour
  • An incontinent disabled man who is both blind and deaf

Other examples of claimants’ experiences include a man whose benefits were stopped for failing to return the necessary forms, despite his wife informing the Department for Work and Pensions (DWP) that he was in a coma; and a man who died 48 hours after filling in his questionnaire – after informing everyone of his death his wife received a call 3 months later asking him to come in for his assessment.

Overall the report highlights stories of more than 70 people who have been inappropriately  assessed, forced to go to tribunal, felt humiliated or treated inappropriately. It comes prior to the publication of the final review of the Work Capability Assessment by Professor Harrington, who steps down as advisor to the DWP this month, and whose resignation was announced in July, just days after the broadcast of two TV documentaries exposing the reality of claimants’ experience of the assessment process.

The report also highlights serious concerns about the number of people who have died after being told by the DWP they were ‘fit for work’ or have taken their own lives in circumstances where applying for ESA and going through the WCA appear to be factors in their deaths.

Professor Peter Beresford OBE, professor of social policy at Brunel University and chair of Shaping Our Lives, said:

“The work capability assessment is unreliable and unhelpful, as well as being arbitrary and cruel… No-one – not the doctors who make the assessment decisions, nor Atos which has responsibility for providing assessments, nor the Department of Work and Pensions which commissioned them – takes responsibility for the problems and failures in the system. It’s a perfect storm of irresponsibility and unaccountability.”

The report includes an analysis of the position of a number of professional and regulatory organisations on the WCA, including the British Medical Association, the Royal College of Nursing, the General Medical Council, the National Audit Office and the Citizens Advice Bureau, as well as Government statements and background information on Atos, the company  employed to carry out the assessments.

The report’s author added:

These issues are a matter of survival for people living with illness and disability.  It is unacceptable that in 21st century Britain vulnerable people are being treated so appallingly. We hope The People’s Review will spur the Government into prompt and concrete action on the failures of the WCA. Radical change is needed – and it is needed now. Whilst there has been some acknowledgement of the problems following Professor Harrington‘s previous Reviews, our evidence from those at the sharp end of the process, including of the high rate of successful appeals and the huge backlog of unheard appeals, shows the whole system is still failing badly. The cost to the taxpayer is enormous and the cost to those going through it goes way beyond money.  In the meantime, sick and disabled people continue to be severely affected by what they’ve experienced, and terrified of what the future holds.

The full report is available here.

Texas Judge William Adams Reinstated- A Year After Video Of Him Beating Daughter With CP Goes Viral

November 12, 2012

I missed the video. For obvious reasons, I’m glad I did. I’m posting this for anyone who remembers the case.

I think it goes without saying, but I’ll say it anyway. I can’t see what made anyone reinstate him. As a father and a person, I would call him every insult in an English language dictionary. As a judge, I can’t bear the thought of what he thinks inside when facing a criminal who has committed child abuse.

Panorama- The Mind Reader: Unlocking My Voice

November 11, 2012

This will be on BBC1 on Tuesday at 10.35pm. I’ll be watching.

In a world exclusive, Panorama follows a group of severely brain injured patients and reveals the revolutionary efforts made to help them communicate with their families and the outside world.

Never before filmed, this Panorama Special spent more than a year with a group of vegetative patients in Britain and Canada.

They witness the moment when a patient regarded as vegetative for more than a decade is able to answer a series of questions whilst inside a brain scanner.

The findings have profound implications for the patients and their families, as well as ethical consequences for scientists and medical staff.

Universal Credit Under Threat After IT Glitch

November 11, 2012

The Government’s flagship reform of Britain’s welfare system, which is being piloted by the Secretary of State for Work and Pensions, Iain Duncan Smith, has been placed on a Treasury list of projects in crisis, The Independent on Sunday has learned.

Despite assurances from the Department for Work and Pensions (DWP) that universal credit will be rolled out on time and on budget, its national launch – scheduled for October next year – will now be limited to small regional projects. Sources within the DWP have told The IoS that a realistic national roll-out – regardless of the department’s public assurances – is already a year behind schedule amid fears that “technical issues over computer software” could push that back further.

Senior DWP staff working on the project are understood to have reported concerns to their Treasury counterparts. The issue was a factor in Mr Duncan Smith remaining at the DWP during the recent Cabinet reshuffle.

A government adviser on information technology said: “IDS, like other ministers before him, has been hypnotised by promises of what an online system can deliver. Warnings were given to him more than a year ago. They were ignored.”

Universal credit has a development budget of £2bn. It is supposed to be a paperless online IT system for claimants that would bridge the DWP’s data with the Treasury. Six separate benefits are to be combined into one payment.

However, the project, according to senior Whitehall sources, is already suffering a £100m overrun. There are also concerns that a further £300m is being hidden by rising costs reallocated to child support payments.

A reorganisation of the complex IT system, following the departure this month of key senior civil servants in charge of universal credit, could mean an overrun of £500m by next spring.

Universal credit potentially affects 19 million people in the UK. Failure to deliver the reforms because of expensive IT errors and design flaws will be deeply embarrassing for David Cameron.

The last Labour government was estimated to have wasted £26bn in botched IT projects, which included the national programme for the NHS and the fiasco over the national identity card scheme. Mr Cameron – when in opposition – promised a move away from big IT projects.

Mr Duncan Smith has claimed the current benefit system was broken, trapped people in welfare dependency, and was not fit for purpose. In its place, the former leader of the Conservative Party wanted a system that claimants will manage themselves through online accounts. Those without computers or internet skills would use high-street outlets or telephone services.

The programme’s director, Malcolm Whitehouse, and the DWP’s head of IT, Steve Dover, last week announced they would be leaving the department. The senior civil servant on the project was described as being “on extended sick leave”. Other key personnel have also left.

Six pilot projects that are currently testing direct payment of benefits to tenants in housing associations have reported errors including the wrong amount of money being sent on the wrong date. The IoS has been told that one project involving just 400 claimants initially proved chaotic. When fully implemented, universal credit would need to deal with almost five million housing-benefit claimants a year.

The staff changes were played down by a DWP spokeswoman. She said: “The programme is moving from design to delivery and these personnel changes are quite normal.” However she did not know if Mr Whitehouse or Mr Dover and others were hired knowing they would ask to leave in late 2012. “I have no idea what their contracts were,” she said.

Fears that the project was over budget were also dismissed. “Universal credit is on time and on budget. It will be delivered in a controlled way, starting in April 2013 in Manchester and Cheshire, to ensure it is fully tested before being rolled out nationally from October 2013.”

Labour’s work and pensions spokesman, Liam Byrne, said yesterday: “Universal credit is in danger of descending into total chaos. Iain Duncan Smith’s flagship scheme is late and over budget, top officials are heading for the hills and no one seems to believe the massive IT system is on track. Ministers must take urgent action before it becomes a multibillion-pound disaster.”

New Study Reveals Bipolar Pregnancy Risk

November 10, 2012

Pregnant women with bipolar disorder are more likely to experience pregnancy and birth complications – regardless of whether they are taking medication, according to a new study.

Previous research suggested that only women being treated with mood-stabilising drugs were more likely to experience complications, raising the question of whether they should receive treatment during pregnancy.

But, according to researchers from Uppsala University and the Karolinska Institute in Sweden, and published by bmj.com, both treated and untreated mothers with bipolar disorder are at increased risk of caesarean delivery, instrumental delivery (use of a vacuum or forceps) and a non-spontaneous start to delivery.

Both groups were also 50% more likely to give birth before 37 weeks compared with unaffected mothers.

Untreated mothers with the psychiatric disorder were also more likely to give birth to a baby with a small head and with episodes of low blood sugar levels compared with unaffected mothers.

The study found: “Mood-stabilising treatment is probably not the sole reason for the increased risk of adverse pregnancy and birth outcomes previously observed in mothers with bipolar disorder.”

In an accompanying editorial, mental health expert Dr Salvatore Gentile said clinicians cannot hope to identify a “safe choice” but merely a “less harmful” one when treating women with bipolar disorder.

He said patients must be properly counselled about the risks of treatment versus the risks associated with the untreated psychiatric disorder, and doctors should “encourage and facilitate social integration, especially for women from disadvantaged social groups and those who are isolated”.

So Many Other Options… And You Choose The Insults

November 9, 2012

A good point, well made. Just spotted on Facebook:

First Disabled CongressWoman Elected In US

November 9, 2012

Obama’s victory, and his specific mention of disabled people in his victory speech, are not all we have to celebrate about the American election, as BBC Ouch reports:

Joining Obama in Congress will be double amputee Tammy Duckworth, the first disabled woman to address the house.

Duckworth, who lost her legs in action as a helicopter pilot with the US army, also blazes a trail as the first Congresswoman of Asian origin. Minority checklist time: she’s a disabled, Asian American woman.

Mother Of CP Man Sues Hospital Over Son’s DNR Order

November 9, 2012

I’ve just read this from last Sunday’s Guardian. I’m covering it late, but those who know me know why I am covering it.

My opinion on DNR orders is that they should only ever be used if the person in question, or their family, have expressed this wish. I have been hearing for some time about cases where doctors have placed, or used, DNR orders on disabled or elderly people without their knowledge or the knowledge of their families.

All such cases upset me, but because I have Cerebral Palsy myself, this case has hit me particularly hard.

The mother of a 28-year-old man with cerebral palsy is suing the hospital where he died, alleging its staff failed to consult her on a decision not to attempt resuscitation and did not administer his medication appropriately.

A coroner has raised concerns about the way Carl Winspear received medication in hospital last year, writing an official letter to the Department of Health (DoH) and City Hospitals Sunderland NHS foundation trust over drug procedures at Sunderland Royal hospital.

The legal action by Elaine Winspear comes as a separate case over the use of so-called “do not resuscitate” (DNR) orders begins at the high court in London on Monday. That case has been filed by the family of a woman who died in Addenbrooke’s hospital, Cambridge, last year.

Relatives want to clarify the law on how DNR decisions are reached for patients with mental capacity to decide and force the DoH in England to establish a national policy, instead of medical staff being expected to follow professional guidance and local policies.

Carl Winspear, who did not have mental capacity to make all his own decisions, died of pneumonia in Sunderland Royal hospital in January 2011.

His mother’s lawyer says a doctor unilaterally decided not to attempt resuscitation if he suffered cardiac or respiratory arrest, recording in the medical notes “speak to family in morning”.

Mrs Winspear told the Guardian that later that morning she was approached by the doctor to ask if she would consider a DNR, but she was not told of any decision having already been made. She said she strongly disagreed with an order being put in place, but claims an undated DNR order was subsequently found by the family in the medical notes.

“His main concern was talking about ‘people like this’ or ‘people like that’. He was talking about his condition. Because a person has a condition, it doesn’t mean that every person is going to be the same.

“It seems the doctor assumed Carl did not have a quality of life. He had a better quality of life than you or I do. He went to a day centre five days a week, doing different things. One day, he might go out for fish and chips, another, they would take him to a pub, a third it would be the allotment.”

Derek Winter, the Sunderland coroner who recorded a verdict of death by natural causes at Winspear’s inquest in July 2011, was worried by problems with the intravenous administration of drugs during his treatment. He wrote to the hospital and the health department over delays in giving Winspear loading doses – large doses of medicine over short times – to try to deliver quick therapeutic responses.

Winspear’s mother said: “I am not saying he would have come through, but who is to say he would not have come through.”

Mrs Winspear’s lawyer, Merry Varney, of Leigh Day, said she “has been left feeling that Carl was grossly let down by the hospital, that he did not receive the drugs that could have eased his suffering and that perhaps more could and should have been done for Winspear but his doctors seemed heavily influenced purely by his disability.”

She also pointed to the low involvement of patients or relatives in DNR decisions found in a review of current procedures by the National Confidential Enquiry into Patient Outcome and Death.

The City Hospitals Sunderland NHS trust said it was unable to comment at this stage.

Varney also represents David Tracey in his case against Cambridge University Hospitals NHS foundation trust. Monday’s hearing will to establish the facts regarding the imposition of two DNR orders on his wife, Janet, while she was in Addenbrooke’s hospital in March 2011. She suffered a neck fracture in a car crash soon after being diagnosed with terminal lung cancer. The trust disputes family accounts of the events. The hearing to resolve the facts is listed for up to 10 days. A full judicial review into the lack of a nationwide policy on DNRs is listed due to start in February.

Congratulations Sarah Storey And Ellie Simmonds!

November 9, 2012

Sarah Storey is the Sunday Times Paralympian of the Year and Ellie Simmonds is the Sunday Times Young Paralympian of the Year.

They are both DisAbled inspirations and Same Difference congratulates them sincerely.

Sport England Launch New Scheme To Aid Paralympic Sport

November 9, 2012

Sport England, the grassroots sport agency funded by taxpayers and the Lottery, has announced a new £1m fund to invest in training sports coaches, carers and parents to develop skills to include disabled people in sporting activity.

Amid ongoing scrutiny of the government’s commitment to delivering a meaningful sporting legacy from the London Olympics and Paralympics, the culture secretary, Maria Miller, insisted that the new scheme – designed to complement a £1m investment from Sainsbury’s in training teachers – could provide a new model for community sport.

“The Paralympics made the UK think about disability differently and I hope that it is the first of many public/private partnerships aimed at developing disability sport at the grassroots,” she said. “I am determined that disabled people of all ages get the chance to play sport, both at school and in community sport clubs.”

But there are ongoing questions about the level of government investment in school sport and the impact of local authority cuts on facilities. The British Paralympic Association hopes that the momentum generated by the Paralympics can help improve access and inclusion for disabled people in community sport.

The next £450m funding round for national governing bodies, to be decided within the next month for the next four year period, is likely to include a requirement to sign up to new commitments on disabled sport.

Sport England figures show that one in six disabled people play sport regularly, compared to one in three non-disabled adults.

The scheme was unveiled on Friday at a community sports centre in north London, at a launch attended by double Paralympic gold medallist Hannah Cockcroft.

Jonnie Peacock, the 100m T43/44 gold medallist in London, said the scheme could make a difference.

“Coaches play a big role in people’s sporting experience so it’s important they receive the training that gives them skills to include disabled people in sport and help them get the most out of it,” said Peacock.

“This could make the difference in disabled people making sport a part of their everyday lives or not playing sport at all. Without the fantastic coaching I received I would not be the athlete I am now.”

Deafblind Children Need Government Support

November 9, 2012

Says Rebecca Front at Comment Is Free.

Rare Genetic Disorder Means Jack, Now 2, Faces Dementia By Age 5

November 9, 2012

A Sunderland family are raising money to help their two-year-old son who is facing the onset of dementia.

Jack Baird has a rare genetic disorder called Sanfilippo syndrome, which means he will not live beyond his teens.

The disease affects about one in 85,000 people and blocks the breakdown of complex sugars in the body and destroys brain cells, leaving them unable to walk, talk or swallow.

A symptom of the condition is the early onset of dementia, which is expected to affect Jack by the age of five.

His parents are trying to raise £600,000 to fund a new treatment being pioneered by scientists in Manchester.

Two Thirds Back Assisted Suicide, Finds Large New Study

November 8, 2012

Two-thirds of people accept assisted suicide, according to international research by Bangor University.

The study of the views of over 62,000 people suggested support was around the same among people with terminal illnesses as for the general public.

Researchers said the result contrasted with a recent review claiming doctors consistently opposed euthanasia.

The main reason given for considering assisted death was unbearable suffering.

Other factors such as loss of dignity, loneliness and being a burden were at least as significant as pain in motivating people to consider taking such action.

Researchers looked at available international literature published about assisted dying and brought together the views of ordinary people.

There were no apparent differences in attitudes between countries, whether assisted dying was permitted by law or not.

People wished to have control so they could choose the right time to die, suggested the study, which is published in the journal Palliative Medicine.

“It remains to understand the discrepancy between the perspectives of doctors and their patients,” the report concluded.

Assisted dying is legal in four European countries – Netherlands, Belgium, Switzerland and Luxembourg – and three American states – Oregon, Washington and Montana.

Celebrity campaigners

Researchers said it remained controversial elsewhere, particularly in more affluent or mainly Protestant countries.

They also said headlines tended to feature professional arguments against celebrity campaigners, with ordinary people “less clearly represented”.

Prof Clare Wilkinson, of the North Wales Centre for Primary Care Research, said: “Our work highlights the collective views of a huge number of people, including those from Britain.

“The medical profession needs to recognise and have respect for this majority view even if we don’t agree with it.”

This summer, doctors at the British Medical Association’s annual conference reiterated their opposition to assisted dying.

Delegates debated the issue after a motion calling for the organisation to take a neutral stance was put forward. Medics voted to reject the proposal.

Prof Baroness Ilora Finlay, a cross-bench peer and professor of palliative medicine at Cardiff University, told the conference it was essential that doctors “never walk away from patients”.

New Non-Bollywood Indian Movie Includes Blind Photographer

November 8, 2012

This sounds very interesting to me. I wonder if this film will be shown in the UK? I hope so.

A new independently made Indian film called Ship of Theseus has been getting attention on the festival circuit.

It is the opposite of a slick Bollywood picture, with no song or dance, and focuses on a philosophical exploration of the plight of three individuals in Mumbai.

Talking Movies’ Tom Brook reports.

Talking Movies is broadcast on BBC World News on Saturday at 13:30 GMT and Sunday at 00:30, 07:30 and 20:30 GMT.

M&S Christmas Advert Featuring Seb White

November 7, 2012

Seb White, 4, the M&S model with Down’s Syndrome, is a part of their brand new Christmas advert. Sneak preview for you, my lovely readers. Sssshhhh…

Mencap Welcomes Marks & Spencer Ad Including Seb White, 4

November 7, 2012

Christmas is nearly here and, this year, it will see a first in the advertising world in Britain. Leading retailer Marks and Spencer will feature a child with Down’s syndrome in its TV advertising campaign.

From tomorrow (Wednesday 7 November), four-year-old Seb White, from Bath, will be on our screens promoting the store’s clothing range. Seb has previously modelled for catalogue company JoJo Maman Bebe – featuring in its autumn catalogue (pictured).

Mencap welcomes Seb’s inclusion. “We are absolutely delighted,” says Mencap spokesperson Emma Harrison. “Seb is a charming and very appealing little boy, and his mother Caroline has fought hard to ensure that he has the same opportunities as lots of other children, to show what he can do and gain confidence.

“The fact that he has Down’s syndrome and will be seen by millions of people on TV and on posters in stores will help us challenge some of the misunderstandings and prejudice that can make life difficult for so many children.”

At lunchtime (12-2pm) on Friday (9 November), you can discuss the advert, and what it could mean for media inclusion in the future, on Twitter. Seb’s mum, Caroline Playle, will be joining in. Please follow Mencap at @mencap_charity and use the hashtag #adinclusion to join the discussion.

Nadine Dorries Has Whip Withdrawn Over Her Decision To Appear In I’m A Celebrity

November 6, 2012

Longtime readers may remember that two years ago, I started a Facebook group calling for Nadine Dorries to be removed as an MP because of her disablist comments on Twitter.

Now, it has been revealed that Ms Dorries plans to be the first serving MP to participate in the reality TV programme I’m A Celebrity… Get Me Out Of Here.

Ms Dorries has been widely criticised for this, and it has just been announced that as a result of the decision, she has been suspended from the Parliamentary Conservative Party.

I feel like the little campaign I started two years ago is one step closer to being successful.

Why Do Bond Villians Need Facial Scars?

November 6, 2012

Asks Victoria Wright in a very humorous article that makes a very good point at Independent Voices.

Stories Of Life With Bell’s Palsy

November 6, 2012

BBC News have published readers’ stories of life with Bell’s Palsy. Looks like it’s more common than I thought.

Poor Hospital Care Blamed For Premature Deaths Of Learning Disabled People

November 6, 2012

People with learning disabilities have a high chance of dying prematurely, interim figures from a major government survey suggest – and critics claim hospitals are unable to respond to learning disabled patients’ needs.

In January 2009 Tina Papalabropoulos became ill. The 23-year-old, who had profound learning disabilities, had developed aspiration pneumonia – which meant food had got into her lungs.

Despite her mother Christine’s repeated requests, it took several days before she was admitted to hospital.

Tina had received good care from Basildon Hospital while she was growing up, but when she had to transfer to the hospital’s adult section, her mother was worried about the treatment she might get.

The hospital promised to put a “transition plan” in place for her, so she would be admitted as soon as she became ill and would be treated by doctors who knew Tina’s needs. But that never happened.

Even when Tina was finally placed on a ward, she did not receive the intravenous antibiotics she needed and she continued to be fed – even though food was getting into her lungs.

“We were actually killing our daughter because all her food or drink was partly going down into her lungs,” says Christine Papalabropoulos, speaking to Radio 4’s File on 4 programme. “The doctors should have been aware of this, because the GP knew.”

Five days after being admitted to hospital, Tina Papalabropoulos died.

“I hope to God that nobody else enters that hospital and is treated the way our daughter was treated, which cost her her life,” says Christine Papalabropoulos.

“The way that our daughter was treated… that is a memory that will never leave my mind.”

Christine Papalabropoulos has complained that the healthcare her daughter received when she became unwell was inadequate – and she was not alone.

The families of 17-year-old Kirsty Pearce, who died in 2003; 21-year-old Lisa Sharpe, who died in 2004; and 20-year-old Kyle Flack, who died in 2006 – have all complained of poor care at Basildon hospital.

The hospital has also been criticised in inquests and ombudsman’s reports, and in one case – that of Kyle Flack – was prosecuted by the Health and Safety Executive.

Hospital’s ‘service failure’

File on 4 has also seen a draft of another damning ombudsman’s report into Tina Papalabropoulos’s case.

It says: “The trust was not customer focused, because it did not keep to its commitment… the care fell so far below the applicable standard, that this was service failure.”

Furthermore: “Tina’s doctors missed any opportunity there might have been, no matter how small, to save her life by providing earlier and more intensive treatment.”

In a statement, Basildon Hospital told the BBC it had made improvements to the care of people with learning disabilities and has now, finally, put transition arrangements in place for young people moving to adult services.

“We strive to provide the best level of care and treatment we can to all. Basildon is the only hospital within the East of England region to have a dedicated learning disabilities nurse advisor,” the hospital said.

People with learning disabilities have long been known to die younger, because they are more prone to suffer from life-limiting medical conditions. But a study being carried out at Bristol University brings proof for the first time of how – and why – people die.

This confidential inquiry into the deaths of people with learning disabilities is due to publish its full findings next Spring, but an interim report seen by File on 4 raises concerns about the treatment received by this vulnerable group when they become ill.

The inquiry team has examined around 240 deaths of people with learning disabilities over a two year period – they all lived within five Primary Care Trust areas in the South West of England.

The team’s interim report – based on the first 93 deaths – found half of the deaths were unexpected 24 hours before they happened.

On a separate measure of prematurity, half of those who died were expected to live for at least another one to two years.

The number of deaths which happened during the study period was between two and three times higher than expected – though academics believe that may simply indicate a high number of people with learning disabilities in the area.

One third of the 93 deaths were of people under 55-years-old – the death rate for people under the age of 55 in the general population is around 10%.

‘Pattern of suffering’

“I think it’s been a huge gap in our knowledge – we haven’t known enough about why people with learning disabilities die,” says Dr Pauline Heslop, the confidential inquiry team manager.

“We need to make sure that this is going to make a difference.”

Dr Heslop says it is too soon to draw firm conclusions from the findings – the final results will be published in March 2013, along with results from a comparator group of 60 people who did not have learning disabilities.

But the inquiry team has asked the government to set up a national review board on the deaths of people with learning disabilities, to review a random selection of deaths, and also those of people who die young or who die unexpectedly.

“This is a very real concern,” says Care Services Minister Norman Lamb, who says he will give careful consideration to setting up the proposed national review.

“Any suggestion that people are dying early – and that is related to having a learning disability – is shocking and needs to be tackled.

“I have been shocked by the lessons we are learning, I am determined to tackle this, not just rhetoric, but in terms of solid actions.

“People with learning disabilities should get the care that is right for them,” Mr Lamb told the BBC.

The latest revelations featured in the study follow a campaign by the learning disabled charity Mencap.

In 2007 the charity published a report, Death by Indifference, which detailed the deaths of six people with learning disabilities.

Since then the charity has catalogued the deaths of 85 people it believes received poor health care before they died.

Mencap’s policy manager, Beverley Dawkins, says the confidential inquiry would validate what the charity has been saying for years.

“It tells a story of failing to provide good primary care, conditions that worsen and go on for too long.

“And it tells the story of hospitals who are unable to respond to the needs of people with learning disabilities,” Ms Dawkins says.

“The sum total of all those failures is a continued pattern of avoidable suffering and death across the NHS, and this absolutely must change.”

David Tracey’s DNR Case Against Addenbrooke’s Hospital At High Court

November 5, 2012

A hospital’s resuscitation policy is under scrutiny in the High Court after a man alleged two “do not resuscitate” (DNR) orders were placed on the notes of his wife without her consent.

David Tracey made the allegation against Cambridge University Hospitals NHS Foundation Trust.

The trust said a doctor did seek the consent of Janet Tracey, 63, who was a patient at Addenbrooke’s Hospital.

The factual dispute hearing in London is expected to last 10 days.

Mrs Tracey, from Ware in Hertfordshire, was diagnosed with terminal lung cancer in February 2011.

She was later admitted to the Cambridge hospital after breaking her neck in a car accident.

‘Transparent policy’

Her family claim she discovered a DNR order had been placed on her file on 27 February and successfully asked for it to be removed, but a second order was added on 5 March.

They say it included the phrase: “The patient does not want to discuss resuscitation.”

Mrs Tracey died two days later on 7 March.

The family also allege notes were included saying three of her four daughters and her husband had agreed to the order, which they dispute.

They say she expressed a clear wish to be involved and for discussions to be held when her husband was with her, but say no such conversation took place.

Merry Varney, of law firm Leigh Day & Co, who represents the Tracey family, said: “This case underlines the importance of a transparent, accessible and consistent policy regarding a patient’s right to know when a decision not to resuscitate them is made, and to know how their views are taken into account and, where necessary, how to challenge a decision they disagree with.”

A full judicial hearing is scheduled for February.

Disability Activist Hunger Striking Against ATOS Until Friday

November 5, 2012

There will be a vigil against ATOS  outside their Cardiff offices starting today Monday at 8am and ending on Friday at 5pm.

Disability activist Christos Palmer, one of the organisers of the vigil, is hunger striking until Friday.

Wales is a bit of a distance for me, so I can’t actually go to the event. But what strikes me about it is Christos’ hunger strike. If people are prepared to go to such extreme personal lengths to get rid of ATOS, the company’s actions are clearly having a very serious effect on their lives and/or the lives of those they know and love.

That’s why I’m writing this post and it’s why I’ve joined the event’s Facebook page.  If you wish to keep up with the event, you can join the page by clicking the link above.

 

 

Comet Rejects £500 Gift Card For CP Boy’s Ipad

November 4, 2012

This is terrible. I know Comet are going into administration but surely that would make them want to get rid of stock, and use up gift cards, before they actually close down?

I’m involved with a charity that provides equipment for children with CP, including Ipads. So I can understand the frustration that Sam and his mum are feeling after this experience. To have put all the work into applying to a charity, had the funding approved, only to be turned away by the store!

I hope they can resolve the situation soon and that the Family Fund are supportive in the process.

A mother whose son has cerebral palsy has spoken of her anger after struggling electrical retailer Comet refused to accept a £500 gift card.

Maria Horton was given the card by the charity Family Fund to buy an iPad to help her son Sam, four, with his school work.

But when she visited a Comet story in Plymouth, staff refused to accept it.

Administrators for the retail store say the use of gift cards and vouchers has been temporarily suspended.

Mother-of-two Mrs Horton, 32, from Plymouth said: “I said to the staff, ‘You already have the money, can’t you accept it?’ and they said, ‘We can’t do anything for you.’

“I spoke to the manager and he said the same thing, that I would have to go away without the goods.

“I’m not the only one who has lost out. They have the money but they are not willing to provide the goods to the children who need them.”

Comet has appointed Deloitte as administrators, putting 6,611 jobs at risk.

Comet’s demise is one of the biggest High Street casualties of recent years.

Deloitte says its priority is to stabilise the business and assess its financial position, while the search for a buyer gets under way.

It says that customer orders will be fulfilled “wherever possible”, but the use of gift cards and vouchers has been temporarily suspended.

Family Fund was unavailable for comment.

 

 

Ouch Interview Lost Voice Guy

November 4, 2012

He’s becoming quite popular, so here’s some Sunday fun for those of you who like him as much as I do.

Million Pound Boost For Grassroots Disability Groups

November 4, 2012

More than £1 million has been awarded under a programme to help disability organisations, the Government announced.

The £3 million fund, launched a year ago, will be extended to Northern Ireland, ministers said.

Esther McVey, minister for disabled people, said: “The idea of the fund was based on feedback we had received from small disability organisations that a little funding at the right time can make all the difference to the support they are able to provide to disabled people.”

The fund is making a “significant difference” to grassroots organisations, said the minister.

Iain Duncan Smith Attacks Step-Parents

November 3, 2012

I dedicate this post to loving step-parents everywhere.

In a speech on Wednesday, Iain Duncan Smith said something unbelievable. This is nothing unusual- Iain Duncan Smith has said more unbelievable things since he’s joined the DWP than I own pairs of socks.

It is what he said that has got me so upset. He was speaking about families, and he did make some good points.

When families are strong and stable, he said quite rightly, so are children.

But when things go wrong in families, he added, quite rightly again, the impact on a child’s life can be devastating.

It is what he plans to do about it that is so unbelievable. He plans to measure the proportion of children living with the same parents from birth- in order to drive home the message that social programmes should promote family stability and avert breakdown.

So, what’s wrong with what he said? There are many wonderful step parents out there who willingly support and love their stepchildren. Stepfamilies may not live together from the birth of children, but they can be just as strong and stable as any biological, nuclear, traditional family. In some cases, stepfamilies are stronger. Some children find more stability, love and support from a stepparent than they would get from a biological one.

Some children may stop living with one of their biological parents after a family breakdown, but the parent may remain a very important part of their lives and still provide them with a great deal of love and support.

The main reason I’m writing this piece is that many studies have shown that families with disabled children are more likely to break up.

Some parents (particularly, but not always, fathers) of disabled children are unable to deal with their child’s disability.

Some fathers of disabled children choose not to remain a part of the child’s life, and do not support the mother, who is often the child’s carer, in any way.

The most famous example of such a disabled child is Harvey Price, son of Katie. After the end of her relationship with Harvey’s biological father, Katie Price was lucky enough to meet and marry Peter Andre who did (and by all reports still does, even though the marriage has now ended) love Harvey and treat him as his own son.

There are many more, sadly less famous, disabled children whose parents have remarried wonderful people who have done exactly the same thing.

In some very sad cases, parents die before their children reach adulthood. Is Iain Duncan Smith really suggesting that remarriage in such cases would not provide children with stability?

Does Iain Duncan Smith really think that a woman who is being physically abused by the man she has married should stay married to such a man ‘for the sake of the children,’ who may well also be being physically abused?

It is easy to understand that Iain Duncan Smith is a supporter of marriage. However, I do not share his view that it is necessary for any child to live with both biological parents from birth to adulthood in order to have a stable life.

As the saying goes, any man can be a father, but not every man can be a dad. Iain Duncan Smith needs to realise that children need mums and dads, not just mothers and fathers. And the love of mums and dads is far too strong and deep to measure in statistics.

IDS To Write To Kieran McArdle

November 3, 2012

According to the Daily Record this morning, IDS is to write to Kieran McArdle, the teenager who sent a letter to the paper accusing ATOS of killing his disabled father.

While this is a positive thing, it is likely that the letter will be a standard one, expressing sympathy at the child’s loss.

This case won’t put an end to WCAs. What should be noted is that a grieving child can see what these assessments are doing to so many. Now that this has happened, we have to wonder why the Government, all adults, can’t see what Kieran McArdle can.

Parents Of Autistic Children Are Scared About Care Worker Changes

November 2, 2012

“I’m glad my wife’s got the care support because about a week ago I nearly lost her… she wanted to hang herself in the apple tree.”

Martin – not his real name – is in his 40s and is a parent and a carer.

His teenage son has Asperger’s syndrome and the whole family has to cope with his violent, aggressive outbursts and manipulative behaviour.

Martin’s wife has been at breaking point for some time and recently considered taking her own life.

She is not on her own. Many parents across Somerset say their own state of mind has suffered as a result of coping with their children’s behavioural problems.

Some of their burden is eased by two full-time carers’ assessment staff who help families like this across the county.

They are mental health specialists but are solely there to promote the wellbeing of the parents, teaching them how to cope and manage their children’s behaviour.

‘Easily swallowed pills’

Judy has a teenage son suffering from severe depression.

“When I first met my carers’ assessment worker, it was just so easy. All I ever did was cry.

“She was so lovely and I just burst into tears but she knew exactly what was wrong and that made a huge difference to me,” she said.

I met these parents at a monthly support session they hold in Glastonbury.

For some of the mums and dads, going to this group is their only night away from home.

Around tea and biscuits, some break down in tears as they discuss the difficulties of dedicating their lives to looking after their mentally ill children. The isolation, the loss of career, the constant mental and physical strain of sleepless nights.

The conversation then moves on to their own health. Many of these parents now suffer with depression and anxiety.

One parent tells me she could have “easily swallowed a bottle of pills on Christmas Eve, and not bothered getting up”.

Another lives a life of split shifts in order to give round-the-clock care to his 10-year-old daughter.

He takes the night shift and sleeps through the day. His wife takes the day shift. Neither of them can work, they have not been on a holiday in five years and he says his wife has, at times, been suicidal.

‘People will crack’

There is one woman at the meeting who quietly sits in the corner with her partner. He speaks on her behalf. She has been unable to talk for 19 weeks; a physical symptom of the mental stress of being a parent carer.

Tonight, the atmosphere is especially fraught. The group has been told the support they have been getting for the past few years is to be discontinued.

Two carers’ assessment workers have helped these families for the past three years, as part of a trial programme commissioned by Somerset County Council and delivered by NHS Somerset. But this level of support will finish at the end of November.

Instead of two people who focus only on mental health issues, Somerset County Council says the responsibility will be taken on by four support workers on a part-time basis.

That is something that frightens these parents.

Single mum Kim is worried that the help she gets in the future could be much less specialised.

“Without having someone there you can text or phone, without that support, people will crack,” she said.

’24/7 job’

Tom (not his real name) is one of the fathers at the group.

“It’s only when I see my carer that I can suddenly unload everything. I can then recharge and face it all again.”

For him, the possibility of having to form a close relationship like this once more is too much for him to think about.

Some mental health professionals have questioned the decision not to extend the trial programme.

Carers UK said: “Parents of young people with long-term mental health problems and illnesses are among the most vulnerable of carers.

“They have a 24/7 job and anxiety which, without proper professional support, will usually mean health problems for themselves, too.”

But NHS Somerset says that parents and children will still be looked after as part of a “reconfiguration of support services to young people and their carers… support for carers will be organised differently under these new arrangements but continuity of the service will be maintained”.

But single mum Elaine, who has two children on the autistic spectrum, is not convinced that things will be the same.

“The only way we are coping is because we’ve got these two carers’ assessment workers.

“Without them, we might fall apart again. Then you feel like you’re failing your child.”

Facebook Group For People Affected By The ‘Bedroom Tax’

November 2, 2012

Teenage Boy’s Letter Accusing ATOS Of Killing Father Delivered To IDS Office

November 2, 2012

OOOOOOOOOOOOOOOOOOHHH

 

 

 

Rewarding Parliamentary Activism for Special Educational Needs

November 1, 2012

A press release I’ve just recieved:

London, UK – January 31, 2013 – – Robert Buckland MP of South Swindon has been nominated for the first ever Grassroot Diplomat Initiative Awards. The award looks to recognise outstanding diplomats and politicians in the UK for their dedication, commitment and selfless efforts in representing civilian matters at the highest level.

Nominated under the Policy Driver category, Mr Buckland has demonstrated an outstanding commitment to children with special educational needs both nationally and locally in his constituency. Without Mr Buckland’s intervention, thousands of children with special needs would have lost access to legal help they need to secure a quality of education.  The MP provides invaluable support to the National Autistic Society and is renowned for bringing the voices of disadvantaged young people right into the heart of parliament. Talyn Rahman-Figueroa, Director of Grassroot Diplomat said, “Grassroot diplomacy empowers the voiceless, defines a path for the hopeless, and restores faith to influencers. The Initiative Award seeks to build trust again between the ‘us and them’ and bring people of all statuses together.” Mr Buckland is committed to engaging the grassroots in its combined efforts to understanding autism at an early stage, and for this, his efforts are being recognised here.

Over 50 high-level government officials have been nominated in 3 categories but there can only be six winners. Join Robert Buckland and other government nominees at the Vincent Rooms, Westminster with evening performance led by Euro-Vision Song Contest artist, Imaani. For ticket information, please visit: www.grassrootdiplomat.org/awards. Early Bird Ticket sale ends November 2012.

New MS Drug Is ‘Most Effective’

November 1, 2012

A new drug is the “most effective” treatment for relapsing-remitting multiple sclerosis, say UK researchers.

During MS the body’s immune system turns on its own nerves causing debilitating muscle problems.

Researchers at the University of Cambridge say a cancer drug, which wipes out and resets the immune system, has better results than other options.

However, there is concern that a drugs company is about to increase the cost of the drug as a result.

Around 100,000 people in the UK have multiple sclerosis. When the condition is diagnosed most will have a form of the disease know as relapsing-remitting MS, in which the symptoms can almost disappear for a time, before suddenly returning.

Built from scratch

The researchers tested a leukaemia drug, alemtuzumab, which had shown benefits for MS in small studies.

In leukaemia, a blood cancer, it controls the excess production of white blood cells. In MS patients, the dose eliminates the immune cells entirely, forcing a new immune system to be built from scratch which should not attack the nerves.

Two trials, published in the Lancet medical journal, compared the effectiveness of alemtuzumab with a first-choice drug, interferon beta-1a.

One compared the effectiveness in patients given the drug after being diagnosed, the other looked at patients given the drug after other treatments had failed.

Both showed the drug was around 50% more effective at preventing relapses and patients had less disability at the end of the study than when they started.

Dr Alasdair Coles, from the University of Cambridge, said: “Although other MS drugs have emerged over the last year, which is certainly good news for patients, none has shown superior effects on disability when compared to interferon except alemtuzumab.”

He told the BBC: “It is certainly the most effective MS drug, based on these clinical trials, but this is definitely not a cure.”

However, he warned there were side-effects. These include developing other immune disorders.

He said he thought the drug would be most useful for patients for whom standard treatment had failed and in a “minority” of patients as a first-choice drug.

Eventually relapsing-remitting MS can become progressive MS as the good spells become shorter and less frequent. The drug will have no effect on this form of the disease.

Expense fears

The drug has been withdrawn from the market in Europe and the US as the manufacturer, Genzyme, intends to have it licensed as a treatment for MS.

A Lancet editorial warns: “There is concern that with a licence for multiple sclerosis, the cost of alemtuzumab could rise and might become too expensive for many patients and health systems.

“Finding promising treatments such as alemtuzumab is important. But so is keeping alemtuzumab accessible and affordable.”

Dr Doug Brown, head of biomedical research at the MS Society, said: “These results are great news for people with relapsing-remitting multiple sclerosis.

“Alemtuzumab has been found to be an effective treatment for people with MS – but it’s only useful to them if it’s available on the NHS.

“We urge Genzyme to price the treatment responsibly so that if it’s licensed, it’s deemed cost-effective on the NHS.”

The company said it would not come up with a price for the drug “until it is approved by regulatory authorities” and that it would “engage constructively” with the National Institute for Health and Clinical Excellence, which evaluates the cost-effectiveness of drugs for use in the NHS.

Stoke Mandeville Doctors Were Afraid To Tackle Savile Over Access

November 1, 2012

Doctors and managers at Stoke Mandeville hospital were afraid to challenge Jimmy Savile over the free access he enjoyed to wards, out of fear that he would take his fundraising millions elsewhere, a former director of nursing has said, as fresh claims emerged of abuse at the hospital and elsewhere.

Christine McFarlane, former director of nursing and patient care at the Buckinghamshire hospital where Savile volunteered for many years, said the TV star “basically … had the freedom to walk wherever he wanted” and maintained a powerful position thanks to “subtle bullying” of hospital managers.

In an interview with ITV news , McFarlane said managers “didn’t fight that hard” to challenge Savile, who had almost single-handedly raised millions of pounds for the hospital, including the funds to establish its famous spinal unit. “There was a fine balance … to reach in not upsetting Jimmy.”

Medical staff’s gratitude for his fundraising efforts had given him a great deal of power within the hospital, she said. “Along with the power, people were afraid of Jimmy stopping raising money for the hospital. There was a fear of him taking something away. He argued that it was his and not theirs.” McFarlane comments came as a woman came forward claiming Savile had attempted to rape her in the nurses’ quarters at Stoke Mandeville in 1987. Debbie Curtis, then a 22-year-old aspiring model, said Savile had invited her to meet patients, after which he took her to his room in the nurses’ accommodation block. He had invited her to sit on the edge of the single bed, she said, “and then he proceeded to push me down and tried to get his hands down my pants. I pushed him away and said no, and with that he pulled his trousers down”.

Curtis said Savile had blocked the door when she tried to leave, and told her she was “a bit naughty”, before she kicked him in the groin and fought her way out of the room.

“When he tried to stop me going out the door I was terrified. More so than him jumping on me. When he jumped on me I kneed him really hard; that’s what made him even more cross – he was going to do what he wanted to do.” She said Savile had told her that nurses from the hospital would visit his room at night. She had told her family and manager about the incident, she said.

Separately, a former patient at Broadmoor has claimed Savile assaulted her at the hospital, touching her intimately under the cover of giving her a hug. She told the broadcaster that when she complained about the star’s behaviour she was put into solitary confinement.

Buckinghamshire Healthcare Trust, which manages Stoke Mandeville, has said it is shocked by the “very serious allegations” against Savile, adding that it is cooperating fully with the Metropolitan police inquiries.

On Channel 4 News , claims emerged that Savile would use staff bedrooms reserved for surgeons and nurses at Leeds general infirmary to spend nights with teenage girls.

Terry Pratt, who worked as a porter at the hospital for two decades until 2010, said the entertainer, who visited patients at the West Yorkshire infirmary from at least 1968, also exploited his access to bring girls, apparently from outside the hospital – some suspected to be under 16 – into staff rooms in the early hours of the morning.

“He would come in about 1am or 2am because there were bedrooms up there and he could get out of the way,” he told the Guardian. Pratt, 65, worked night shifts and said he witnessed Savile bring different pairs of girls in, “one on each arm”. “He would say ‘Hello’ to the shift leader, ‘Can I go in the nurses’ rooms again?'” He said Savile would sometimes come as often as twice a week: “Say on a Monday and again on a Thursday.”

“It was debatable whether the girls were 16,” Pratt said. “They were definitely in their teens. When they started talking to you it was obvious they weren’t streetwise, especially being out at that time in the morning. It was different people each time and he never brought them back through our room. There was always a car waiting. On one occasion when I went for a breath of fresh air I saw the girls get into the back and he would get into the driver’s seat and drive them off.”

Pratt said the rooms were intended for nurses and travelling specialist surgeons and Savile knew they were often empty. Savile had a home in the Roundhay suburb of Leeds less than three miles from the hospital. The rooms are now used as administrative offices by the Leeds Teaching Hospital NHS Trust which is facing parallel Metropolitan police and Department of Health inquiries into Savile’s activities during his association with the general infirmary spanning five decades.

The Leeds Teaching Hospitals Trust on Wednesday treated Pratt’s claims with caution. Pratt originally said he thought he saw Savile bringing girls into the hospital in the early 1980s, but the trust said he only worked there from 1990 to 2010. Pratt on Wednesday said he had made a mistake over the dates and that he meant the early 1990s. “I stand by what I said,” he said.

Another former porter who managed Pratt and still works for the trust told the Guardian Savile did come into the hospital in the early hours of the morning on several occasions. The porter said that on one occasion in the late 1980s he arrived at the porters’ area with two women but he said there was no evidence of Savile taking the women to rooms.

In another development, former staff at Broadmoor claimed Savile was widely regarded as an abuser during his time working at the hospital. Bob Allen, a former staff nurse, said he saw the entertainer take a young girl who appeared to be 14 or 15 years old into his house and switch the lights off, but when he reported it to his supervisor the following day, he was told, “no one appears to be interested”.

“I’d say he was a psychopath,” Bob Allen told Channel 4 News. “A lot of the staff said he should be behind bars. We used to laugh about it in those days.”

He said he had seen Savile with a young girl “definitely not of adult age”, who was wearing a carnival sash. He had watched the DJ take her into his house, and then switch the lights off.

A former psychiatric nurse who worked at Broadmoor for 30 years told the broadcaster that talk about Savile being a paedophile was widespread at the hospital.

Richard Harrison said: “I’d long considered him, as my colleagues did, as a man with a severe personality disorder and a liking for children .”

Edwina Currie, then a junior health minister, appointed Savile to a task force to manage the hospital in 1988. She told the Channel 4 News in a statement: “What [Savile] did have, as I know for certain, is information which gave him a hold over staff. That could explain why they said nothing, even with their knowledge or suspicion of his misbehaviour. As a result ministers were never given the information, when we could have barred him from the place.”

Man, 60, Jailed For Attacking Woman Because Of Disability And Sexuality Prejudice

November 1, 2012

A 60-year-old man who carried out an attack motivated by sexual and disability prejudice on a woman with cerebral palsy has been jailed for four months.

William Mainland admitted his assault on Joanne Duncan was aggravated by prejudice against her disability.

Perth Sheriff Court heard he grabbed the 31-year-old by the throat and pushed her against a fence.

Sheriff Michael Fletcher called it a most regrettable offence.

Mainland, who walks with a stick and claims Disability Living Allowance himself, carried out the attack in the Perthshire village of Stanley on 17 July.

Fiscal depute Catherine Fraser told Perth Sheriff Court: “The complainer is 31, but she suffers from cerebral palsy and has considerable difficulty with movement and speech. She has been given a mental age of 13.

“She requires to use a tripod walking aid when she walks any distance.”

Grabbed victim

The court was told that at a local shop she ran into Mainland, who shouted at her that she did not need the tripod.

Ms Fraser said: “He used his left hand and grabbed hold of her by the throat and pushed her against a garden fence.

“He shouted: ‘You’re a lesbian, nothing but a lesbian.’

“She became distressed. A witness heard and came out of her house. She could see the complainer was crying, highly distressed and had red marks on her neck.”

Perth Sheriff Court was told that when Mainland was traced by the police he was heavily under the influence of alcohol.

Previous friction

Solicitor Rosemary Scott, defending, said Mainland accepted he had a long-standing problem with alcohol but “had no excuse for his behaviour”.

She told the court there had previously been friction between Mainland’s partner and Ms Duncan, but that he had little recollection of attacking her.

Mainland, from Stanley, admitted assaulting Ms Duncan on 17 July in an incident which was “aggravated by prejudice relating to disability”.

He also admitted shouting and swearing and calling her a lesbian in an offence “aggravated by prejudice relating to disability and sexual orientation”.

Sheriff Michael Fletcher said: “This was a most regrettable offence considering the person who was the victim of your behaviour. This is an offence which deserves a custodial sentence.”

Tesco Worker Claimed £70000 In Disability Benefits

November 1, 2012

A Tesco worker who unloaded trucks and stacked shelves has been jailed for claiming more than £70,000 in disability allowances.

For 10 years Keith Meyrick claimed he could not work because of mobility problems following an accident.

At Newport Crown Court he admitted seven offences of obtaining money by deception, making false statements and failing to disclose information.

Meyrick, of Maesycwmmer in Caerphilly county, was jailed for eight months.

Continue reading the main story

“Start Quote

Although he walked with a limp managers never saw him using any aids to walk”

Joanna James, prosecuting Newport Crown Court

The court heard that Meyrick worked at a Tesco in Ystrad Mynach and earned £150,000 while claiming incapacity and disability allowances.

The court was told that he was supposed to walk only with a stick and crutches, but undertook “very physical” work at the store.

His £300-a-week job as grocery team leader involved him moving stock around the store, unloading trucks and stacking shelves, the court was told.

Meyrick had been claiming benefits since 1988 after suffering a serious accident which affected his mobility.

Joanna James, prosecuting, said: “He stated that he was virtually unable to walk and relied on a walking stick and crutches at all times.”

But the court heard that he was fit enough to apply for a job in 2001.

Hip operation

He told Tesco managers in a store questionnaire that he had no health problems and was perfectly able to carry out his work.

For 10 years Meyrick claimed benefits until he was unmasked after a tip-off to the Department of Work and Pensions (DWP), the court heard.

Continue reading the main story

“Start Quote

It is vital that public confidence in the benefits system is maintained and the public needs to be reassured that people who defraud public funds will be punished”

Judge Stephen Hopkins QC Newport Crown Court

During that time he had amassed £50,500 in incapacity benefit and £23,400 in disability living allowances, the court was told.

Miss James said: “He was sent annual reminders by the DWP about notifying them if his circumstances changed, but he never did.

“Although he walked with a limp managers never saw him using any aids to walk.”

Meyrick left the dock with the help of a walking stick, the result of a hip operation four months ago.

Judge Stephen Hopkins QC said: “You suffered a serious accident in 1988 but clearly you recovered and did your job well and efficiently.

“It is vital that public confidence in the benefits system is maintained and the public needs to be reassured that people who defraud public funds will be punished.

“You carried out a multiple fraud over a very significant period of time.”

Two Men Jailed For Rape Of Blind Woman

October 31, 2012

Documentary Makers Seek Young, Pregnant Disabled Woman For New Programme On Disability, Pregnancy And Parenthood

October 31, 2012

From an email I’ve just recieved:

The documentary my company has been commissioned to make for BBC3 is about ‘Disability, Pregnancy and Parenthood’, we aim to highlight how pregnancy and parenthood are affected by disability and the trials and challenges that disabled parents face.

We specifically would like to find a 16-28 year old woman who is pregnant at the moment and ideally giving birth in either December, January or February, although any stage of the pregnancy would be suitable. We have a very limited period of time available so we will need to identify someone within a week if possible.
 
The company that I work for (Special Edition Films) have produced a number of sensitive medical based documentaries on subjects including organ donation (Heart Hospital – ITV1), cystic fibrosis (Love On The Transplant List – BBC3) and treacher-collins syndrome (Love Me, Love My Face – BBC3). Naturally, we will approach this subject with the same respect and sensitivity.
 
If you could circulate this message on your website or any other places that you think may be relevant it would be really helpful.

Community Ramps

October 31, 2012

I’ve just read this article from Disability Now about a small community called Ampthill in Bedfordshire. Local disabled people are campaigning for a ‘community ramp.’

This would be stored at a central place and used to allow wheelchair users to access local businesses, at no extra cost to the business.

I think this is a brilliant idea and not only do I wish the people of Ampthill success with their campaign, but I also think every small community should have one of these ramps, provided by their local council!

 

 

Jane Nicklinson To Discuss Assisted Dying Law

October 31, 2012

The widow of campaigner Tony Nicklinson is expected to argue the case this week for making Scotland the first part of the UK to change the law on assisted suicide.

Jane Nicklinson is appearing at a conference in Edinburgh with veteran right-to-die supporter and politician Margo MacDonald, who has already tried and failed to make assisted suicide legal north of the border.

The conference, on Friday, will also hear from Ludwig Minelli, the founder of Swiss assisted dying organisation Dignitas.

Mr Nicklinson died in August days after his assisted dying campaign was turned down by the High Court in England. The 47-year-old, who refused food in the days following the landmark case, was paralysed by a stroke in 2005.

Ms MacDonald, an Independent MSP at Holyrood who has Parkinson’s disease, hopes to persuade the Scottish Parliament to back her revised legislation.

“This is a great panel of contributors which will help people to understand the issues,” she said. “People want their loved ones to live as long as possible but we have people where life is no longer good. You wouldn’t put an animal through the experience of some people.”

Other contributors at the conference are Sir Graeme Catto, chairman of Dignity in Dying and emeritus professor of medicine at the University of Aberdeen, and Dr Libby Wilson, convener and medical director of support group Friends at the End.

Ms MacDonald’s original attempt to change the law resulted in a free vote, with no party political obligation, among all MSPs at Holyrood, including government ministers. It was defeated 16-85 in December 2010. The End of Life Assistance Bill was considered by a specially convened committee which did not support the general principles.

Under the MSP’s revised plan, Scotland would change the law which currently leaves people open to prosecution for culpable homicide. Assisted suicide remains a criminal offence in England and Wales, punishable by up to 14 years in prison.

Among Ms MacDonald’s new proposals is a suggestion that a trained, “licensed facilitator”, a so-called “friend at the end”, would have to be present when someone is at the point of ending their own life. Such a measure is primarily aimed at making sure any fatal medication is taken correctly. A facilitator could be a doctor, social worker, or close friend but not a relative or anyone who stands to gain from the death.

Bell’s Palsy- Half A Smile

October 31, 2012

After a lifetime of pretty much doing what I told it to do, one half of my face has decided to go on strike.

From the left side of my forehead to the left side of my chin, every one of my facial features is in complete, open mutiny.

I can’t raise my left eyebrow. I can’t close my left eye.

And when I try to smile, while the right side of my mouth still obligingly pulls itself into the requisite shape, the left side refuses to budge.

The resulting expression turns out to be useless at signalling a friendly hello but it might come in handy if I ever decide to hold up a corner store.

Welcome to the strange world of a Bell’s palsy sufferer.

Bell’s palsy is not a great thing to happen to a TV reporter.

That said, it’s not a great thing to happen to anyone who needs his or her face and from the many accounts I’ve seen online, plenty of people carry on with their daily lives.

So I’ve decided that I will too.

And while I fully accept that my ailment might be about the least important bit of news out of China at the moment, writing about it here means there’s a ready explanation for any member of my global fan-base (you know who you both are) wondering why half my face doesn’t work when they see me on screen.

But whatever my own reasons, this peculiar and fascinating ailment surely deserves a bit more of a mention – not least because the condition has quite a list of celebrity endorsements.

Both George Clooney and Sylvester Stallone are reported to be past sufferers and both recovered.

Clearly I’m hoping my recovery will be a little bit more like George’s.

Bell’s palsy owes its name to Sir Charles Bell, the 19th Century anatomist and surgeon-hero of the battle of Waterloo who discovered the function of the facial nerve.

He wouldn’t have put it quite like this, but what we now know is that if human beings were cars, then Bell’s palsy is the kind of fault that ought to lead to a mass recall. It is certainly a sign of some pretty shoddy wiring.

The facial nerve, on its way from the spinal cord, passes through a narrow bony passage close to the ear. At times of lowered immunity, a dormant virus, usually the chicken pox or cold sore virus, can wake up and attack the nerve causing it to swell. Sometimes this can be triggered by an event – in my case a minor injury to my left eye – but at other times there is no apparent trigger at all.

The result of the swelling, though, is a constriction of the facial nerve inside that narrow bony passage, which in turn causes the paralysis.

No matter how hard the brain tries to send messages, from that one point of swelling onwards the face beyond sits there in blissful radio silence.

The thousands of endings into which the facial nerve eventually divides, embedded in cheeks and forehead and lips and eyelids and responsible for every emotion from a smile, and a wink to a frown, are cut off and stranded.

Sir Charles would certainly have noticed the palsied faces on the streets of his native Edinburgh 200 years ago and what is true then is true today. Bell’s palsy can strike anyone, of any age, gender or race, and although it’s classified as a “rare” illness, it is common enough that about one in 60 people will experience an episode at some time in their life.

The very good news is that most people make a full recovery within the space of a few months.

The nerve, over time, is able to recover and regenerate.

The worrying news is that a significant minority of sufferers are left with permanent effects, sometimes serious. Either way, the condition means at least weeks, sometimes months, coping with facial paralysis, which can of course be difficult, socially at least.

The blogs and postings of other Bell’s palsy sufferers show that, for those who don’t recover fully, it can be a devastating and life-changing condition. One father writes of his inability to ever appear again in a family photograph.

For me, so far at least, I haven’t been too troubled by my onset, and besides, I am of course hoping to recover. So for those interested in following a neurological TV first, my slow progress, or lack of it, can be watched live on the BBC over the next few months.

Of course, with the likes of Clooney and Stallone in his club, old Sir Charles is already used to hobnobbing with real stars.

But now he can claim the odd spot on the Beeb too, and I like to think he would be proud of me.

Disability, Abortion And Women’s Rights

October 31, 2012

Disability and abortion are two words not without a creeping discomfort. More so, when put together. The latter recently reared its head; casual calls to draw back a woman’s right to choose are now familiar in their cyclicality. The Tory minister for women Maria Miller, for her part, would like to reduce the abortion time limit to 20 weeks. Despite the fact that this is the point when many foetal abnormalities are detected, Miller, the former minister for disabled people, made no mention of what it would mean for women whose 20-week scan showed their child would have a disability. She either hadn’t thought it through or didn’t much care.

Some people seem to care, often more than they should. Last month, an alliance of “pro-life” campaigners and religious groups launched a campaign to ban the termination of pregnancies on the grounds of disability. The Paralympics – with its “astonishing examples of courage and triumphs over disability” – they said, highlighted the “contradiction” in the current abortion law.

The contradiction they refer to is that while the Abortion Act 1967 sets a 24-week limit on having an abortion, when there is “substantial risk that if the child were born, she or he would have physical or mental abnormalities as to be seriously handicapped”, there is no limit. There are good reasons for that – medicine, practicality and basic human empathy.

Last year, out of the almost 190,000 abortions in England and Wales, 146 of them were after the 24-week point. However, the percentage of couples who choose an abortion after discovering their baby will have Down’s syndrome is routinely 90%. For some, being told their child will have a severe disability is reason enough not to go ahead with the pregnancy. Worse (if certain moral judgments are to be applied), this is sometimes the case for pregnancies resulting from IVF that, before the word “disabled” was uttered, were much wanted.

Those trying to ban abortions on disability grounds claim that this is “eugenics”, a form of “disability discrimination”. And they think a sporting event that displays the most physically able disabled people tells us all we need to know about disability and, while we’re at it, a woman’s decision-making process. These are campaigners who reduce the nuances of disability to an insulting level, yet speak as if they are saving us from being wiped out, and we should be grateful.

There are times when abortion is the humane choice. In reality, there are times when people feel they simply cannot cope. It’s OK to say that out loud. The thought doesn’t suggest a disabled life is worth less, but acknowledges the extra time, energy and money a severely disabled life needs. Right now, there are parents of disabled children who are having to skip meals to pay the gas bill. There are disabled children who aren’t getting the childcare, schools, therapies or even healthcare they need. If aborting a disabled foetus makes you uncomfortable, perhaps that should too.

It’s convenient to judge the individual choosing the abortion. Truth is, many make their choice based on the conditions of society. To care about disability means working to make these changes, not using it as a smokescreen to take women’s rights.

Call For New ‘Corporate Wilful Neglect’ Law After Winterbourne View

October 30, 2012

The Winterbourne View scandal has shown the need for a new offence of “corporate wilful neglect” to prosecute care home-owners for allowing abuse to go on behind closed doors, the former care minister has said.

Paul Burstow, who until the recent reshuffle was minister of state for care services, said companies should be brought to book alongside the staff committing the abuse.

Mr Burstow, a senior Liberal Democrat, was speaking out after it emerged that many of the patients moved from Winterbourne View have had new fears raised over their safety.

He told BBC Radio 4’s Today programme: “What I am clear about, and I believe the Government now need to do, is to institute a programme of closing these long-stay so-called assessment and treatment centres.

“It also needs to make sure that the companies who take the money – if they fail, and in this case they more than failed, they abused people – they need to be corporately accountable, as well as the staff, who stood in the dock last week.

“We have corporate manslaughter on the statute books and I think there is now a case for corporate wilful neglect as well.”

Last week six members of staff – four support workers and two nurses – were jailed for between six months and two years for their roles in the abuse at the private hospital in Hambrook, South Gloucestershire.

Five others were given suspended prison sentences by a judge at Bristol Crown Court, who condemned the “culture of ill-treatment” and said it had “corrupted and debased”.

The BBC’s Panorama exposed the scandal in June last year when it broadcast undercover journalist Joseph Casey’s secret footage recorded when he was employed at Winterbourne View as a care worker.

Tonight Panorama is showing a second programme on the private hospital and alleges that NHS safeguarding alerts have been issued for at least 19 of its 51 former patients since they were moved to other care homes.

It emerged last week that Avon and Somerset Police are investigating an allegation of assault against 18-year-old Ben Pullar, who was a resident at Winterbourne View.

A serious case review, which was published in August, condemned Winterbourne View’s owner, Castlebeck Ltd, for putting its own profits before basic humanity.

The 24-bed Winterbourne View had an annual turnover of £3.7 million and was regarded as Castlebeck’s best performer financially.

The home was exclusively funded through contracts with local authorities and the NHS and charged on average £3,500 a week per patient.

Health regulators, police, social services and the NHS were also heavily criticised for failing to spot the warning signs about the treatment of patients.

Dr Margaret Flynn, who wrote the 150-page serious case review, said her findings could be the “tip of the iceberg” and that care at Winterbourne View had become “institutional abuse”.

Her report detailed hundreds of incidents of restraint and dozens of assaults on patients and said that, had it not been for Panorama, the scandal may never have come to light.

Senior managers at Castlebeck ignored internal reports of the excessive use of restraints and injuries to patients, as well as the concerns of its own staff.

Last week, the families of the victims at Winterbourne View called on the Government to ensure the scandal could not be repeated.

They said they hoped that ministers would “seize this unique opportunity with both hands” to make changes.

The Government said its report into the scandal would be published very soon.

“It has shone a light on major flaws in the system which we will address,” Care Services Minister Norman Lamb said.

Among the residents at Winterbourne View who was captured on camera being abused was Simon Tovey.

The 38-year-old was slapped and also physically restrained by care workers, Bristol Crown Court was told.

His mother, Ann Earley, told ITV’s This Morning: “They (the care workers) were the worst possible people to care for Simon and that is clear without any shadow of a doubt.

“Nonetheless, the company had a culture which enabled that to happen. The (NHS service) commissioners put Simon there without having any awareness of the sort of place it was.

“There had been numerous reports to the local council that had not been acted on.

“There were ample opportunities for this to be flagged up.”

Mrs Earley said she was saddened that it took the Panorama investigation to bring the abuse into the open.

“I think they (the staff) were probably frightened and intimidated,” she said.

“I cannot believe people were unaware bearing in mind the bruises our children had… the things they were saying themselves.

“I am really hurt that people I liked didn’t even bother to pick up the telephone and make an anonymous call.”

Mrs Earley said Winterbourne View was not an isolated case.

“I think it is unique in the sheer number of people involved but I do not think in any shape or form it is isolated,” she added.

A medical lawyer has called for urgent reform of the UK’s care system to protect vulnerable patients from being subjected to further degrading abuse.

Julie Lewis, from Irwin Mitchell, said: “Like the rest of the country, we were shocked and appalled by the Winterbourne View scandal and we hoped it would be a wake-up call to the industry that more needs to be done to protect vulnerable patients from degrading abuse.

“Sadly, it seems this was not the case and the latest news that patients are still not being given the support and care they need is hugely disappointing.

“National guidance on people with learning disabilities calls for them to be cared for in their communities, but the Department of Health has estimated in England 1,500 people with challenging behaviour are currently in hospitals and this is not acceptable for them or their families.

“The Government needs to abolish long-term care homes where severely-ill residents are dumped for long periods of time far away from their loved ones.

“This way of caring for patients does not provide them with the best quality of life, which should surely be the top priority for all care homes.

“Until this radical reform takes place that proves lessons have been learnt, the care system in the UK for those with behavioural problems will continue to be a concern for all those who rely on it.

“There is no excuse for this and the Government needs to implement better systems before the public’s faith will be restored.”

BBC Ouch! Interview Kaliya Franklin

October 30, 2012

This made me smile, because BBC Ouch was where I first ‘met’ Kaliya. It was much bigger then, and she was much less famous than she is today.

Stephen Green, 47, Becomes UK’s First Councillor With Downs Syndrome

October 29, 2012

New Care Safety Fears For Former Winterbourne View Patients

October 29, 2012

Many patients who were poorly treated at a private hospital which closed down after a BBC Panorama investigation have had new fears raised over their safety.

Last week six support workers were jailed for abusing vulnerable patients at Winterbourne View, near Bristol.

NHS figures show safeguarding alerts have been issued for at least 19 of its 51 former patients since they were moved to other care homes.

The government said “lessons must be learnt from Winterbourne View”.

Of the patients that have been issued with safeguarding alerts, at least one has been assaulted and one criminal inquiry is under way.

However, not all of the alerts mean that someone was harmed.

Campaigners told Panorama they feared vulnerable adults were being warehoused in a system that was not offering them the support they need.

Shivering and shaking

Using an undercover reporter in the spring of 2011, Panorama secretly filmed support workers slapping patients, pinning them under chairs and giving them cold punishment showers at Winterbourne View.

Last week at Bristol Crown Court, 11 people were sentenced for the ill-treatment and neglect of patients at the hospital.

Six were jailed, including ringleader Wayne Rogers, 32, who admitted nine counts of ill-treating patients, and was jailed for two years.

Simone Blake, then just 18, faced some of the most disturbing abuse at Winterbourne View, including being drenched in water and left shivering and shaking on the freezing ground outside.

Simone was moved to an NHS hospital – Postern House in Wiltshire – as soon as the abuse allegations were revealed.

Postern House was just forty minutes’ drive from Simone’s parents, allowing them to visit her several times a week.

In June of this year her parents received a letter from Ridgeway Partnership, the health trust that runs Postern House, telling them that she was the subject of a safeguarding alert and that four members of staff had been suspended.

Her mother, Lorna Blake, said: “We were not told what they had done wrong… even though this is not the same as Winterbourne View, she has still gone through a wrong – whether it is a wrong restraint or whatever, it is still wrong.”

Ridgeway Partnership, which runs Postern House, accepts the family should have been told more about the investigation. Wiltshire council says it has no reason to doubt that Postern House provides good care. Both Wiltshire Council and Ridgeway Partnership say the incident can’t be compared to Winterbourne View.

Simone has now been moved to another hospital 200 miles away; her fourth in two years. The eight-hour round trip is too long a journey for her parents to make.

“We can’t see her and we used to visit three times a week… it’s not very nice to not see your child,” Mrs Blake said.

Research for the “Count me in” survey in 2010, which falls under the auspices of the Care Quality Commission, found that in England and Wales one in 20 patients with learning disabilities in hospital said they had been assaulted at least 10 times in the previous three months.

‘Dumping ground’

Care and support minister Norman Lamb said: “Lessons must be learnt from Winterbourne View and any abuse must be investigated and perpetrators punished.”

Mr Lamb said the government wanted to reinforce “to local areas that they must take responsibility and eradicate mistreatment of any kind”.

“I have been clear that those who lead organisations where people suffer abuse or neglect should be held accountable.

“In most cases people do not need to be in long stay institutions and we want the role of these organisations to be looked at closely.”

He added: “We will very soon be publishing our final recommendations for what more can be done to prevent abuse and to protect those in vulnerable situations.”

The chief executive of the learning disabilities charity Mencap, Mark Goldring, said cases like Simone’s highlight a system that has resorted to warehousing difficult patients with challenging behaviour.

“What allowed Winterbourne View and places like it to flourish was that those places were effectively being used…as a dumping ground by public bodies who had not planned ahead.”

National guidance on people with learning disabilities calls for them to be cared for in their communities, but the Department of Health (DoH) has estimated in England 1,500 people with challenging behaviour are currently in hospitals.

Margaret Flynn examined what went wrong at Winterbourne View in the most exhaustive report, the Serious Case Review.

She said that needs to change: “If nothing else results from the scandal of Winterbourne View Hospital I very much hope that it is scrutiny of a practice that moves people around as though they are pawns. We can and should be doing something so much better.”

Panorama: The Hospital that Stopped Caring, BBC One, Monday 29 October at 20:30 GMT and then available in the UK on the BBC iPlayer.

Hurricane Sandy

October 29, 2012

This is just a short post from a disabled person in London, England, wishing all disabled and elderly people safety and support during Hurricane Sandy as it hits New York City and any other parts of America it may choose to visit.

It’s difficult to believe that a city like yours is being evacuated and having its public transport system shut down- but that’s what we are hearing here on the news.

To those affected who are not disabled- of course my hopes and good wishes extend to you. Please, please stay safe. If it is at all possible, please support your disabled or elderly friends and neighbours through the storm.

If it is at all possible, please share your experiences of the hurricane in the comments below.

Updated 8.15 am UK time: We here in the UK are facing flight disruption as a result of the hurricane. Does this affect anyone with a disability and/or carers? Will it prevent anyone getting to SDR surgery on time?

Police Raid Female Disability Activist’s Home For Facebook Posts ‘Criticising DWP’

October 29, 2012

A female disability activist in Wales (not China) has reportedly been ‘visited’ by police for posting comments on Facebook that were critical of Government cuts, specifically the DWP.

Now, I know there are rules about what we can and can’t post on Facebook. Had the woman posted something racist, homophobic or sick comments about a disabled child, I would have completely supported the police contacting her in a professional way, during working hours, asking her to delete the posts and even giving her a fine.

But that was not what happened. The woman was simply expressing strong frustration at Government policies- policies that will probably directly affect her personally as she has a disability.

She was reportedly highlighting the deaths of disabled people following benefit assessments.

The police did not charge her. They simply wanted to speak to her about her Facebook posts. Yet they forcefully entered her home at midnight on Friday, and in her own words:    ” They kept going on and on at me, it was horrifically stressful, and they only left after I started crying uncontrollably.”

For many disabled people- and for what some might call the ‘new generation’ of disability activists, the Internet is simply a useful campaigning tool. Specifically, many of us use social media sites like Facebook and Twitter.

If disabled people could leave their houses, stand on streets and chain themselves to buildings, like students have been doing for the last two years in protest at tuition fee rises, we would.

Those of us who physically can sometimes do.

However, there are many of us who physically can’t. We have no other outlets for our campaigns, for our frustrations, than Facebook. We live rich and full and meaningful social lives on Facebook. Facebook is our pub. Twitter is our library.

Had this activist been able to go down the pub last Friday night and say what she wrote in conversation with a few friends, I am sure she would gladly have done so.

Had this activist and her friends been having a spoken conversation down the local pub last Friday night, saying what she wrote on Facebook, it is highly unlikely that the police would have thought twice about the comments.

I once heard a quote that made a lot of sense to me. “Freedom of speech does not give you the right to shout ‘fire’ in a crowded theatre.”

In the same way, freedom of electronic communication does not give you the right to advertise a fictional fire on a social networking site.

However, if freedom of speech gives you the right to discuss your opinions on government policies (and last I checked, it does in the UK) then surely, freedom of electronic communication should do the same.

Girl, 11, Has Wheelchair Stolen On Day Out

October 29, 2012

Can anyone help?

An 11-year-old girl’s wheelchair has been stolen during a Cambridgeshire youth club’s outing to Essex.

Thirty children from Bassingbourn Youth Club were swimming at Southend Tennis & Leisure Centre when the theft happened on Saturday afternoon.

Cerys Hennighan has musculo-skeletal problems and her wheelchair was custom-built by the NHS.

The coach’s luggage hold was broken into between 13:30 and 17:00 BST when it was parked on Southchurch Avenue.

Her mother Tracey Hennighan said: “Cerys was upset and dismayed and the children were shocked.

“Why does somebody do that and what use are they going to get out of a wheelchair?

“We’ll now have to approach NHS wheelchair services to see where we go now, as I have no idea if she’ll be eligible for a replacement or if it’s covered by coach or Bassingbourn Youth Club insurance.”

Essex Police are appealing for anyone with information to contact them.

Meet The Tambins

October 27, 2012

They are all visually impaired, but they don’t let it hold them back in life.

Winterbourne View: The Sentences

October 26, 2012

Personally, I would’ve given them all life in prison, but it’s not my decision…

https://twitter.com/AlexandraWomack/status/261771417329229824

https://twitter.com/AlexandraWomack/status/261771746074587136

https://twitter.com/AlexandraWomack/status/261772187596374016

https://twitter.com/AlexandraWomack/status/261772782797459456

https://twitter.com/AlexandraWomack/status/261772855505735680

Full details at the BBC.

A Guide Dog’s WCA

October 26, 2012

Paul Carter at his funniest, making a point through humour.

The Importance Of Staying Connected (When You Have A Disability)

October 26, 2012

This is a guest post by Matthew Smith. It was originally posted here earlier today.

Over the years that the Internet has existed as a mass medium (which is more or less my adult life — I first got online at university in 1995, before Google and just as the dot-com boom was taking off), I’ve often heard people put it down as a needless distraction to getting things done, or as a source of junk information, or as if it had little value to anyone except paedophiles, terrorists and other ne’er-do-wells. Some people express such sentiments with sarcasm, such as this tweet I just saw:

For many of us, the Internet is a hobby in itself or even a living; it provides opportunities for programmers, both professional and hobbyist, and support staff; for others, it’s an outlet for opinion. For many others, it’s a means to make and keep up with friends, to share information such as photographs more easily than could be done without. Granted, people of my generation and those before did for centuries without the Net, but the benefits have been enormous and many of us could not imagine life without it. However, some people still do not understand quite how vital it is for some people, and often these people have control over the wires.

One example of these is BT. Unfortunately, BT control the main broadband network in the UK and in many areas, if you want broadband, BT (or a company reselling BT, such as TalkTalk) is your only option. (In some areas, Virgin offer a competing service which uses their cable TV network.) I know of two people who recently had to change their broadband arrangements, in one case because she had been cut off by the BT reseller she and her brother had been using (Orange) when her brother failed to pay the bill; the other simply moved house. Both are disabled, the first with an autistic spectrum disorder (the brother also has a mental health disorder) and the second with a physical condition that requires the use of a powered wheelchair. Both had to wait weeks, and in one case the re-connection got held up because of an engineer’s mistake.

An internet connection is often vital for people with disabilities and chronic illnesses, because their conditions make it difficult, or in some cases impossible, for them to get out of the house and meet friends in person (in the case of ASDs, it makes it possible to connect with people without their social difficulties getting in the way quite as much). I am not sure if BT are made aware of which of their customers has a disability and therefore may need more prompt service than others, but there should be some way for customers to make them aware.

People in hospitals often find that they cannot access the internet easily, or cheaply. Of course, some people only stay in hospital a short time and may be too ill, and some might say it shouldn’t really be a high priority, but some people do have to stay in hospital for extended periods and may need to communicate with people outside for matters such as the care of their children or the running of their business, or even to tell people they are being mistreated. In parts of some hospitals the vastly over-priced internet tokens you can buy to use the provided TV/internet machines are the only way of getting online because much of the hospital does not have reception. And while many patients can have visitors, not all can, perhaps because their relatives live too far away, or because they really do not know anyone who lives locally to them or the hospital.

An example of how devastating the loss of internet access can be in this day and age comes from a friend of mine who lives in a country in mainland Europe. She was admitted to a psychiatric unit a few months ago, for reasons I am not sure of but she has an ASD and recurrent depression among other things, and has a physical disability also. During the summer she was told she would not be released for another year, and as acute hospitals cannot keep long-term psychatric patients, she would have to go to a locked long-term facility, which in her case was a centre in a remote area some 90 miles from home. When she got there, she discovered that she could not have any internet access because many of the residents have drug or alcohol problems, and could otherwise have used the internet to order drugs. After just days in the centre, she jumped from a balcony.

After that, she was moved to another acute hospital, where she got her internet access back (which is how I, and her other friends in other countries, found out about it). She was initially told that she could be released if she found suitable accommodation in her home city, but this was overruled by the head doctor on the grounds that he would be responsible for any ill consequences of her release. However, it has been arranged with the centre that she will have her own room and access to the internet when she returns. (Yes, people in psychiatric units in Europe do have internet access, unless they are in a high-security institution like Broadmoor.)

It should not have taken a suicide attempt to get this accommodation. Besides the matter that people who run care homes, psychiatric units and similar facilities should always make suitable accommodations for the individual patients’ needs, not treat them as stock or as pieces on a game board, unless there is a pressing need (related either to that person’s health or anyone else’s safety), someone’s mental health needs should not preclude them having internet access (there is a case for it being provided, if someone cannot provide their own and is not free to leave). The Internet may have been a luxury when I first used it at university in 1995; today, it’s a lifeline for many people. It’s not just a nuisance and a liability for care home managers or a money-spinner for the likes of BT. It’s about time both these groups of people realised the power they have over vulnerable people, or were held accountable for it.

EDM 631: Daniel Roque Hall

October 25, 2012

Readers in the UK, please ask your MP to sign this:

That this House notes that Daniel Roque Hall is a 30-year-old severely disabled man with Friedreich’s Ataxia, a multi-system and fatal illness, now so advanced that he cannot use his arms or legs, has blurred vision, damaged speech, heart failure, cardiac arrhythmia and Type 1 diabetes; further notes that he was imprisoned for attempting to bring cocaine into this country, but recognises that, given the seriousness of his condition and the complexity of his care needs, prison is not suitable for him, bearing in mind that seven weeks through his three-year sentence he was taken to hospital where he remains two months later after spending overa week in intensive care; further notes that his mother, his GP, the former HM Chief Inspector of Prisons, Lord Ramsbotham, disability and other organisations, including Ataxia UK, Liberty and WinVisible and over 1,400 people who signed a petition, have warned that a return to prison would amount to a death sentence for him; welcomes the decision of the Secretary of State for the Home Department to stop the extradition of Gary McKinnon because it would subject him to inhuman and degrading treatment and endanger his life; and calls on the Secretary of State to show the same compassion to Daniel Roque Hall by allowing him to serve the rest of his sentence at home, where he can receive the appropriate care and medical support and be supervised by probation services.

Does IDS Want To Send Benefit Claimants To China?

October 25, 2012

Iain Duncan Smith is to make a speech to a think tank in Cambridge today about ‘child related benefits.’

He has told the BBC that one of the changes being considered is a possible cap on such benefits at two children. Currently, families get ‘child related benefits’ for every child they have- so the more children a family has, the more related benefits they are entitled to.

So, said Mr Duncan Smith, families on benefits are often ‘freed from’ the decision of whether they could afford more children. This is a decision, he says, that working people have to make. Families on benefits must, he said, now ‘cut their cloth.’

He said the state would continue to support unemployed people who wanted to have children but had to question whether such support would be ‘endless.’

He says this is not about ‘penalising’ people or even saving money. It is, he insisted, a question of fairness to taxpayers who are working and supporting welfare.

A cap like the one Mr Duncan Smith has suggested would directly affect people who are unemployed through no fault of their own, as a direct result of long term sickness or disability.

Imagine a young woman who has completed a good education. Imagine she has worked for some years at a chosen career, contributed to the economy, paid rent, bills and tax.

Imagine she has no children, but has always wanted a big family.

Now imagine that after a few years, she develops a long-term illness and has to give up work. She then meets a partner, who also wants a big family. He has had a similar education and has also worked at a chosen career, a career he gives up to support his partner through her illness.

Is Mr Duncan Smith suggesting that such a couple should not have more than two children? A couple who have done everything right in life, who have as much wish to work as anyone else but who just can’t consider working?

Imagine a young mother who longs for children. She, too, has a good education and a successful career. Now, imagine that through no fault of her own, she has a child who is born with a severe disability.

Is Mr Duncan Smith suggesting that if such a mother gives up work to be a carer to her child, she should be prevented from having more than one other child? Even if she wishes to plan ahead, to give her disabled child siblings who will care for them when it is no longer possible for her to do so?

Imagine someone who was born disabled, who wishes to work but, as a direct result of disability, is unable to have a full time job.

Imagine they manage to get a low paid, part time job. Now imagine they have two children and claim child tax credit.

Is Mr Duncan Smith suggesting that such a person should not be allowed to consider having another child?

It is quite possible that none of these scenarios crossed Mr Duncan Smith’s mind when he suggested this “two child cap.”

If they didn’t, he needs to be told that all three are very possible. He needs to consider very carefully whether such a cap would apply in these situations.

As it is, the policy sounds like something that was thought up by the current government of China. If Mr Duncan Smith would rather all benefit claimants went to live in China until they got a full time job, he should just say so.

Widow Speaks Out About Husband’s Dignitas Choice

October 25, 2012

It is ten years since the first British person chose to travel to Switzerland and end their life with the help of the Swiss Dignitas organisation since then 217 British people have used its assisted-dying services.

Today programme presenter Evan Davis spoke to Win Crew, whose husband Reg was the second British person to commit assisted suicide at Dignitas.

Reg suffered with motor neurone disease and had got the idea of going to Dignitas from a television programme, and he sent off for information.

Mrs Crew explained what happened: “All we did really was give him his last wish.”

 

Winterbourne View: Patient Was Forced To Take Medication

October 25, 2012

Three care workers at a private hospital exposed by BBC Panorama abusing patients were filmed forcing medication into a patient’s mouth, a sentencing hearing has been told.

Alison Dove, 25, Graham Doyle, 26, and Holly Draper, 24, pinned down Simone Blake, 19, while Sookalingum Appoo, 59, forcefully made her take paracetamol.

They are three of 11 care workers of Winterbourne View, Bristol, who are being sentenced for neglect or abuse.

All have admitted in total 38 charges.

The private hospital, now under new management, looks after people with severe learning difficulties.

The court has already heard evidence that five residents, including Miss Blake, were abused by the defendants. Bristol Crown Court heard that during an incident Miss Blake made a distressing squealing noise.

‘Wet herself’

The footage, which also showed Miss Blake spit the tablets out, was played in court.

As the staff continued to force the medication into Miss Blake’s mouth by holding her nose and making her drink water, Appoo joked: “…water everywhere and not a single drop to drink.”

The court heard Miss Blake was being given paracetamol and an anti-psychotic drug, both of which she was prescribed.

In another incident, Miss Blake had water poured over her by Doyle and Dove.

In the footage, Doyle pushes her and adds: “Look at that, you’ve wet yourself.”

Appoo walks in, sees that Miss Blake is soaking wet and asks the support workers: “Why did she do that?”

Draper, who is out of shot, replies: “She wet herself. It went all over her head.”

Doyle joins in: “She did it on her hands. Did a handstand… It was amazing to watch, could have filmed it but illegal so…”

Appoo is seen laughing before walking away.

The footage also shows Wayne Rogers restraining Miss Blake with a chair. Appoo walks past a couple of times without saying anything.

‘Challenging patients’

Kerry Barker, prosecuting, said: “When interviewed, Appoo said he had never had to force medication on anyone before and Winterbourne View was the first placement where he had seen that practice.

“He denied seeing water poured over Simone and seeing her restrained under a chair. However, having watched the film footage he said that sort of thing was going on all the time.

“He expressed his remorse for not acting with regard to improper restraints but, in mitigation, said that he had never worked with such challenging patients and was relatively new to the hospital.”

In another incident, Miss Blake is sitting on the floor in the garden shivering, visibly wet.

The footage shows Rogers explaining to Kelvin Fore, 33, that he had got fed up with Miss Blake spitting at him, so he tipped a jug of water over her head.

The full list of defendants is: Michael Ezenagu, 29, from Shepherds Bush, west London; Alison Dove, 23, of Kingswood; Graham Doyle, 25, of Patchway; Jason Gardiner, 44, of Hartcliffe; Daniel Brake, 27, of Downend; Holly Laura Draper, 23, of Mangotsfield; Charlotte Justine Cotterell, 21, from Yate; Neil Ferguson, 27, of Emerson Green; and Wayne Rogers, 31, of Kingswood. All admit ill-treating patients in their care.

Sookalingum Appoo, 58, of Downend; and Kelvin Fore, 33, from Middlesbrough; pleaded guilty to wilfully neglecting patients in their care.

Dove and Rogers have requested to remain in custody but the remaining nine defendants were released on bail by Judge Neil Ford QC, the Recorder of Bristol.

The hearing was adjourned until Friday when Judge Ford will pass sentence upon them.

Conservative Pundit Calls Obama A ‘Retard’ In Post Debate Tweet

October 24, 2012

And here, a Special Olympics competitor writes an open letter to the pundit, Ann Coulter.

HandSteady Mug Makes Drinking Easier For Disabled And Elderly People

October 24, 2012

An article by Chris Peacock to promote his invention. Thanks to Chris.


 

handSteady – the answer for people who struggle with standard cups

 

handSteady is an innovative cup that makes drinking more comfortable for the 1 in 6 of the population who have a health condition. The unique Rotatable Handle removes the need to twist your wrist, raise your elbow or lean your head back as far; as it stays upright using gravity, tilts easily and keeps steady despite tremor.

Inventor Chris Peacock says, “I designed handSteady because a close family member was diagnosed with a long-term health condition. I could see how this would one day make drinking with a cup difficult and unsafe. I knew as a designer I had to come up with an answer.”

Chris developed handSteady with 35 health professionals and 72 people with various health conditions at the National Hospital for Neurology and Neuroscience, Parkinson’s UK, National Tremor Foundation, Suttonand Croydon MS Centre and Nightingale Nursing Home. Diane Patient from Stevenage has MS and says, “I have weakness down my left hand side & my hands can be shaky. handSteady is extremely light, easy to use & comfortable. I love it & use it all the time.”

It was at IBM where Chris was first taken seriously as an inventor. He then went to the Royal College of Art to do a 2 years Masters in Industrial Design Engineering to develop my skills as a new product designer. Guys and St Thomas’ Charity are backing the project and it’s being produced in West Sussex, Britain, by a precision manufacturing company that ensure the product meets ISO9001 standards.

 

Guys and St Thomas’ Charity made a commercial investment in handSteady to make it a reality. The Charity supports medical innovations in Lambeth and Southwark which have the potential for commercialisation across the UK and more widely. Michael Wright of Guys and St Thomas’ Charity said, “We are delighted to have supported the development of handSteady, which is such a simple idea that  promises to radically improve the quality of life of people living with a health condition.”

The best way to understand the benefits of handSteady is to see a video demonstration of it on the product’s website: www.handsteady.com.

Winterbourne View: Police Will Start Fresh Inquiry Into Ben Pullar Case

October 24, 2012

Police are to begin a fresh inquiry into the case of a patient allegedly punched in the face at a private care home in Bristol.

Ben Pullar, who is autistic and has bi-polar disorder, had two teeth knocked out when he was a patient, then aged 18, at Winterbourne View.

The incident happened two years before the BBC’s Panorama programme revealed widespread mistreatment at the home.

Eleven care workers are being sentenced for abusing five patients there.

Mr Pullar’s twin brother, Tom, said that if the families of other patients at the hospital also came forward with events they would like reinvestigated, he wanted the reassurance they too would be looked at thoroughly by the police.

He said: “It’s OK to have one review into what happened, but there’s people out there who have been involved in abuse of these patients and they’re free to walk away because they weren’t there while the BBC were filming.

“It happened for three years before. The BBC were only filming for a five-week period and it’s a culture that takes a very long time to develop.”

Raised the alarm

The care home, now under new management, looks after people with severe learning difficulties.

Mr Pullar spent almost a year at Winterbourne View, from July 2009.

Daily care notes from his time at the hospital, obtained by Inside Out West, state Mr Pullar “had an accident with his teeth” just weeks after he arrived.

His family said they were given mixed messages about what happened and were told at one point he had “bitten the floor”.

He was taken to Bristol Dental Hospital by Winterbourne View staff as an emergency patient, and two doctors there raised the alarm with the authorities because of the severity of his injuries.

Dentists said his injuries were consistent with being punched. Senior dental consultant Dr Jane Luker said: “I think they thought the injury he sustained wasn’t consistent with what they were being told.

“He had allegedly bitten a carer and the injuries were sustained from him biting that carer.

“[But] because the teeth were pushed back palatally, towards the back of the mouth, it would be consistent with a punch or a blow to the front of the face.”

‘Lingering concerns’

The nurse involved, Maxwell Nyamukapa, was suspended and later reinstated.

Despite repeated attempts to contact Mr Nyamukapa, he has refused to comment.

The police logged it as an assault, and said the nurse had acted instinctively and in self-defence.

Police agreed the assault on Mr Pullar was “not acceptable” but said they would not reopen the case.

Now following “obvious concerns from Ben’s family”, a police spokesperson said they “have begun a fresh review of Ben’s case”.

“The abuse suffered by the patients of Winterbourne View was appalling in the extreme.

“We want to make sure we learn all we can from this, and address any lingering concerns about incidents that took place there.”

Solicitor Charlotte Skouby, from the firm representing Mr Pullar’s family, said: “We’re extremely pleased that the police have decided to review the case given the strength of clinical evidence as to the severity of Ben’s injuries…”

She added: “This is something we see in our practice all the time, complaints of mistreatment of vulnerable individuals.

“These complaints aren’t being heeded by the responsible authorities.”

Mark Lever, chief executive of the National Autistic Society, which called for Mr Pullar’s case to be reinvestigated, welcomed the decision.

He said: “People with autism can be incredibly vulnerable in these settings.”

The Inside Out West investigation is available to watch until 29 October on the iPlayer.

Meet The Fixperts

October 24, 2012

Designers helping the public solve everyday problems.

Charities Welcome Increase In Unconditional ESA

October 24, 2012

Disability charities have given a cautious welcome to a government announcement that more claimants are receiving maximum, unconditional disability benefit payments, the apparent result of ongoing improvements to the testing system.

The percentage of new claimants receiving unconditional Employment and Support Allowance (ESA) payments has doubled since May 2010, the quarterly statistical release from the Department for Work and Pensions showed.

The new minister for employment, Mark Hoban, attributed the increase to recent improvements to the work capability assessment (WCA), the test designed to determine who should receive benefits and who should be classified as fit for work.

“We are determined to carry on improving the assessment so those who are too unwell to work get the financial support they need, while those who can work get the help they need to get a job,” he said. “With annual independent reviews and by working with medical experts and charities, we have substantially improved the WCA process, which is resulting in a fairer system.”

Paul Farmer, chief executive of Mind, who earlier this year resigned from a panel advising the government on the policy because of his concerns about the system, said the test remained “deeply flawed” and called for further improvements.

“We are pleased to see that fewer people are being inappropriately declared fit for work, and that more people will have unconditional access to the ESA benefit they so desperately need. However, we still have a long way to go. The work capability assessment used to determine eligibility for ESA is deeply flawed and does properly not recognise the impact of mental health problems on ability to work,” he said.

“The system is based on assumptions that claimants need to be forced back to work, rather than supported on their own terms; and that those not well enough to go back to work are somehow perceived as scroungers. These attitudes only serve to further damage individuals’ mental health and increase the time until they may be ready to return to work.”

Richard Hawkes, chief executive of the disability charity Scope, said: “Some people genuinely can’t work. This doesn’t mean they are scroungers. It’s good that the government appears to be acknowledging this. But there remains an alarming dossier of evidence that the work capability assessment is a deeply flawed test.”

The quarterly statistical release showed that 54% of new claimants assessed were found to be able to work, while 46% were eligible for the benefit. Those eligible for payments fall into two categories – 26% were put into the support group, classified as too ill or disabled to work. In May 2010, just 10%-11% of claimants were put into this group.

Twenty percent of claimants were put into the work-related activity group, which means they are currently assessed as too ill or disabled to work, but will be expected to have regular Jobcentre meetings to start preparing them for an eventual return to work.

Yahoo and T-Mobile revive ancient tradition of inaccessible Captchas

October 24, 2012

This is a guest post by Matthew Smith. Thanks to Matthew.

Captchas are a method websites use to tell whether a visitor is a person or a computer. This is typically used to prevent automated use of their system, and in the case of forums and blog comment boxes, this is used to stop spam. This often takes the form of letters contained in a picture, which a person can see and read but a computer can’t understand because, if they even download the image file, they won’t (unless they have special character recognition software) be able to tell what letters are in it. Captchas (which stands for “completely automated public Turing test to tell computers and humans apart”) exploded in popularity in the mid-2000s, because blogs got snowed under with adverts for indecent material and gambling.

 

Most websites, including a lot of sites run by people on tiny budgets using cheap shared hosting and free software content management systems like WordPress, use a captcha with an auditory alternative, i.e. you can listen to the letters instead of read them. There is some criticism of this as often the audio is garbled and the letters aren’t that clear. It took a while for this ‘accessible’ form of Captcha to catch on but the vast majority now use one. One of them even claims to offer words from real books that are being digitised by a big public library, although the fact that many of the words are gobbledegook and exist in no known language – indeed, often couldn’t possibly be words – suggests that not all of these images are from real books. But either way, it’s a long time since I saw an inaccessible one. I thought they’d died out.

 

Apparently, though, two major companies still use them. Last weekend, I tried joining T-Mobile’s forums to ask a question about a problem upgrading my Android phone. I also joined the CyanogenMod forum and XDA Developers, both technical forums and neither run by a major multinational telecommunications company. But it was only T-Mobile that required me to fill out a Captcha from an inaccessible image. I could read it, but my friend Kimberley couldn’t (link: http://kimberleyrobbins.ca/yahoo-chat-barring-blind-people-from-entering/ ) when she tried to join a disabled people’s chat room on Yahoo that she had frequented many years ago.

 

Captchas are not even all that secure – a few years ago the Guardian’s technology editor, Charles Arthur, noticed that spam was getting through on some websites after the Captcha had been filled in, so either spammers were using optical character recognition (OCR) or getting workers in overseas call centres to fill them in by hand. Either way, the system got cracked and there should be no further excuse to put this barrier in front of blind and visually impaired internet users. Since every blog run on a shoestring budget has better ways of controlling spam, there is no excuse for companies the size of T-Mobile and Yahoo not to.

Goodbye, Ceefax

October 23, 2012

Ceefax has been an institution in the UK ever since I’ve been old enough to watch TV. I remember my parents reading ‘Teletext’ on old, slow TVs in the 90s. When the National Lottery started in 1994, this became a weekly occurrence as it was always our first stop to check the Lottery numbers.

Too young to use it when it was really needed, I have never paid it much attention. When the Internet came into our lives in 1997 and the National Lottery got itself a website, I soon started secretly wondering why we couldn’t just check the numbers online.

As the World Wide Web got wider and more relevant to the modern world, I started secretly wondering why Ceefax still existed. No doubt, it had been very useful once. However, in today’s digital world of Ipods, Itunes and Internet-based everything, Pages From Ceefax soon became nothing more to me than that programme on BBC2 between 2 and 6 am.

I can’t help wondering what will fill that slot now. Tonight at 11.30pm, after 38 years on air, Ceefax will come to its natural end. In a farewell fitting for a national institution, it will be switched off by an Olympic champion, Dame Mary Peters.

It is the start of Ceefax that most interests me, though. That may seem like a strange thing to say about something which is about to end, but the reason I’m saying it may surprise some of you even more.

Ceefax was originally invented when BBC engineers were exploring ways to provide subtitles for viewers with hearing impairments. So the service may never have existed without deafness.

As Ceefax is laid to rest, I thank it- for years of Lottery results and for proving a point I’ve been trying to make for a few years now: If you look hard enough, you will find that in one form or another, disability is everywhere and in everything!

Has Castlebeck Really Been Transformed Since Winterbourne View?

October 23, 2012

 

When private care group Castlebeck was sold for £255m in 2006, it was seen as the UK’s leading provider of specialist health and rehabilitation services for adults with learning disabilities and complex needs. On 31 May last year a television exposé demolished the company’s reputation and shredded its value.

The BBC’s Panorama uncovered a shockingly abusive regime at Winterbourne View, a Castlebeck “assessment and treatment” hospital near Bristol. The company was charging an average £3,500 a week for each of up to 24 patients but providing an environment that, in the words of a subsequent serious case review, “raised the continuous possibility of harm and degradation”.

Eleven former members of staff of Winterbourne View have been convicted of criminal offences of abuse and are being sentenced this week. The unit has been closed, as have two others run by Castlebeck, but Panorama is preparing to broadcast another programme containing further revelations about the scandal, the company and the system that enabled it to boast, as it did in 2006, of its “five-fold value growth” in just four years.

Restoring Castlebeck’s good name may seem like mission impossible, but Sean Sullivan has been giving it his best shot. He is a “business turnaround” specialist, brought in last November at the instigation of what he calls the company’s stakeholders – taken to mean not only its owner, Lydian Capital Partners, an investment club for entrepreneurs including Irish tycoons John Magnier and JP McManus, but also the banks that largely funded the purchase of Castlebeck six years ago.

Sullivan, 51, is a no-nonsense character with an earlier career in utility management, whose past assignments have included sorting out the wholesale electricity market in Tbilisi, Georgia, and the water corporation in South Australia. But his family runs care homes and he was responsible for turning Care Principles, another leading UK provider, around, as well as large efficiency projects in the NHS. So he reckons he knows poor care practice when he sees it – when others may not.

So what did he find at Castlebeck when he was initially appointed as the company’s chief restructuring officer?

“A lot of half-blind people,” Sullivan says, referring to managers who weren’t seeing what was wrong.

In March, having drawn up a detailed action plan, he was made executive chairman and told to go ahead and implement the 51-point plan. Since then, he has swept through the organisation, spending £8m, instituting new practices and clearing out most of the management. He thinks his task is almost complete.

“Since March we have had a full-on, A-to-Z turnaround of all and everything that Castlebeck involves to get it into some sort of shape that is attractive for [care] commissioners, right for patients and has some commercial reality to it,” he says. “It’s not 100% yet – you can’t change every unit immediately – but we have turned around now in over 80%, perhaps 90%, of the units. I think we reached that point about three or four weeks ago. It is a repaired business.”

Many will be sceptical of his claims. It is an open secret that Lydian and/or the banks are seeking a buyer for the company and there will be suspicions that the makeover is only skin-deep. But the company is being unusually transparent about the transformation it says it is undertaking, and some influential voices in the care sector are impressed.

Support and endorsements

“Can we put our hand on our heart and say they are changing? Yes, we can,” says Ann Chivers, chief executive of the British Institute of Learning Disabilities (Bild). Her organisation is working with Castlebeck to offer support on advocacy and last-resort use of physical restraint, but it remains opposed in principle to the assessment-and-treatment model of care by which people with challenging behaviour are taken out of the community for indeterminate periods. This is still practised at some of the company’s remaining 20 units. “We have a reputation to protect and we had to really think about whether we should get involved,” Chivers stresses. “But they are definitely in turnaround mode. There is some very solid and robust stuff going on there.”

Another endorsement comes from Sukhvinder Kaur-Stubbs, a trustee of the Social Care Institute for Excellence, who has joined Castlebeck as a paid independent non-executive director. “I’ve been impressed with the approach that has been taken and the speed with which change has been made,” she says. “I think there is some learning from it for the care sector as a whole around what good governance should look like.”

Kaur-Stubbs sits on a Castlebeck board that has been revamped radically: Sullivan says that half its members now have a medical or nursing background. These include Debra Moore, brought in as director of nursing and patient safety, who was a learning disability nurse adviser to the Department of Health and joint lead of Valuing People, a programme for learning disability. Lee Reed, who had recently been appointed as the company’s chief executive at the time of the Winterbourne View scandal, and who declared himself “personally ashamed”, remains on the board as group director responsible for the separate mental health business.

Moore has taken the main responsibility for quality, audit, clinical risk and compliance across the organisation. But Sullivan sees the unit managers as the key to the success of his action plan – built on the findings of consultants PwC, called in after the scandal broke – and he has felt it necessary to take drastic measures. “Probably 70% [of managers] have exited the business,” he says euphemistically.

“You have got to have people who used to be a commissioner, or a senior nurse, and who are able to engage with commissioners in that same field. Suddenly they click and they get it.” He found some familiar faces among the managers he inherited. “There were individuals that I had let go at other organisations I turned around,” he says. “They have moved on again.”

Sullivan is poor management was at the root of Castlebeck’s malaise. “Winterbourne View was a photograph in time,” he says. He describes the abuse as “appalling” but says that culture “had been allowed to build up over a long period”. He says he has found some “stars” among the 1,100 staff, who have been rewarded with promotion, but he has relied heavily on bringing in experienced interim managers (“I have a little black book”), about half of whom he expects to stay on permanently.

All 20 remaining units in England and Scotland operating under the Castlebeck brand, and with a total capacity of about 350 people, have been refurbished and re-equipped from top to bottom at a cost of £3m. More importantly, though, all users of services are now reassessed regularly, with the involvement of their families and care commissioners, to try to make sure they do not languish in the system. Some, Sullivan admits, ought to be receiving different care elsewhere. Various outside organisations, including Bild, have been contracted to offer support on a range of issues.

Occupancy of the units, which dropped sharply after the revelations, has been rising again and, Sullivan says, is exceeding his target of 80% at 12 of the sites. For the first time in 16 months, care professionals are said to be calling unprompted to inquire about job openings, while internal satisfaction ratings by commissioners and families, shared with Society Guardian, show a positive score – though complaints about standards persist.

The unanswered question is whether Castlebeck will wholly abandon the assessment-and-treatment model, as critics demand. Sullivan, who expects to remain at the company for only a few more months, says part of the turnaround involves placing the units on care pathways so that they play a clear, time-limited role in an individual’s progress. He cites Thornfield Grange, formerly what he calls a “generic learning disability” facility in Bishop Auckland, County Durham, which has been converted into a rehabilitation unit for people with autism moving on from the company’s service near Darlington.

However, he believes there is a continuing need for long-stay units for some people who have been in hospital-type settings for most of their lives. “It’s a very difficult area, but we do have people in the UK, perhaps aged 60, who have a 40- year background in these services and may have been heavily medicated for much of that time,” Sullivan says. “What is the future for them if we do not provide a safe and supportive home for life?”

Winterbourne View Victim Loved Pain, Court Hears

October 23, 2012

A care worker at a private hospital exposed on television abusing patients was filmed telling a colleague that one of their victims “loved pain”.

Bristol Crown Court was shown footage of Alison Dove, 25, of Kingswood, hitting the same patient.

Dove is one of 11 ex care workers of Winterbourne View, near Bristol, being sentenced for neglect or abuse.

The care home, now under new management, looks after people with severe learning difficulties.

The court heard that five residents – Simone Blake, Simon Tovey, Louise Bissett, Louisa Deville and Lorraine Guildford – were abused by the defendants.

‘Punch your face’

Dove, referring to Miss Blake, was filmed by a BBC Panorama reporter as saying: “She loves pain, doesn’t she? She thinks it’s funny.”

She then told Miss Blake: “Simone, come here and I’ll punch your face.”

The court then saw footage of Dove run up to Miss Blake, who was sitting on the floor with her back to her, and striking her hard on the back with the flat palm of her hand. Miss Blake squealed in pain twice.

In another scene from the footage recorded by journalist Joseph Casey, Dove was seen filling jugs of water from a sink and pouring water over Miss Blake.

Water splashed into her face and she cried out: “I’m cold mum.”

Dove and colleague Graham Doyle were seen on the footage encouraging Miss Blake to go outside wet. Dove also squirted shower gel towards Miss Blake’s face.

The care worker asked her: “Do you want another shower?”

The footage then captured Miss Deville tell Miss Blake: “Simmie, don’t mess with Ali or she will put you in the shower again. Yes, she will put you in the shower.”

In another incident, with Miss Guildford, Dove straddled her as she was lying on the floor and said: “Listen, you don’t get to chuck stuff at me, you know that.

“I don’t let you get away with it. I’m going to keep it, all right, until you say sorry, all right, because we’ve done nothing to you except tell you to get dressed, so you can have your dinner.”

After Miss Guildford swore at her, Dove responded with: “Go on, spit on my staff. I dare you. There you go, spit on your own bedding, you won’t do that will you?”

‘Profits before care’

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

Judge Neil Ford QC, the Recorder of Bristol, said the sentencing hearing could last up to five days.

A serious case review published in August condemned the hospital’s owner Castlebeck for putting profits before care.

Castlebeck said the criticisms in the report were being “actively addressed”.

The full list of defendants is:

Michael Ezenagu, 29, from Shepherds Bush, west London; Alison Dove, 23, of Kingswood; Graham Doyle, 25, of Patchway; Jason Gardiner, 44, of Hartcliffe; Daniel Brake, 27, of Downend; Holly Laura Draper, 23, of Mangotsfield; Charlotte Justine Cotterell, 21, from Yate and Neil Ferguson, 27, of Emerson Green, Wayne Rogers, 31, of Kingswood, who all admit ill-treating patients in their care.

Sooaklingum Appoo, 58, of Downend, and Kelvin Fore, 33, from Middlesbrough, pleaded guilty to wilfully neglecting patients in their care.

Dove and Rogers have requested to remain in custody but the remaining nine defendants were released on bail by Judge Neil Ford QC, the Recorder of Bristol.

The sentencing hearing continues.

Autism Society Wants Probe Into Ben Pullar Winterbourne View Punch

October 23, 2012

An autism group has called for a new investigation after allegations a patient lost two teeth when he was punched at a private Bristol hospital.

Eleven care workers are to be sentenced later for the maltreatment and neglect of five patients at Winterbourne View.

A BBC investigation also found evidence of alleged abuse against former patient Ben Pullar.

The National Autism Society said the case should be “fully investigated” but police said they would not reopen it.

Mr Pullar is autistic and bi-polar, with severe learning difficulties, and when he was 18, he spent almost a year at Winterbourne View from July 2009.

The nurse involved, Maxwell Nyamukapa, was suspended and later reinstated. Despite repeated attempts to contact Mr Nyamukapa, he has refused to comment.

The police logged it as an assault, and said the nurse had acted instinctively and in self-defence.

Sarah Lambert, from the National Autism Society, said: “Any disabled person living in residential care who sustains serious injury must have their case fully investigated.

‘Clear message’

“Abuse of those with autism and other disabilities by those who are supposed to care for and protect them is utterly abhorrent and is a disability hate crime.

“The police must reopen this case in order to send a clear message that any abuse by support staff is not only totally unacceptable, but a serious criminal offence.”

Daily care notes from his time at the hospital state Mr Pullar “had an accident with his teeth” just weeks after he arrived.

His family were told at one point he had “bitten the floor” and he was taken to Bristol Dental Hospital where the alarm was raised.

Notes obtained by Inside Out West said the nurse was bitten and retaliated in order to remove his fingers – and later, that he had pushed and pulled to get them out.

South Gloucestershire Council has declined to comment on Mr Pullar’s case.

Castlebeck, the hospital’s owner at the time, said its new board and management was rigorously reviewing what happened at Winterbourne View.

It said it had also referred Mr Nyamukapa twice to the Nursing & Midwifery Council, which declined to comment.

Inside Out West is on BBC One West on Mondays at 7.30pm and is available for seven days after on the iPlayer.

Out In The Open- Manifesto For Change By The EHRC

October 23, 2012

To mark the 5th anniversary of the deaths of Fiona Pilkington and her daughter, Francecca Hardwick, the Equality and Human Rights Commission have published a report into tackling disability-related harassment.

Out In The Open- Manifesto For Change can be downloaded from the EHRC website here.

How the Chelsea Flower Show embraced disabilities

October 23, 2012

This is a guest post by Jason Tucker.

As possibly the most well-known horticultural show in the world, the Chelsea Flower Show has always brought in a very strong crowd since its conception in 1913. Each year there are around 157,000 attendees, all clamouring to feast their eyes on the best and brightest displays.

 

This year saw something extra special, as the top prize went to the Furzey garden display – the only display to be created by gardeners with learning disabilities. Created at a cost of just £60,000 – a small amount in proportion to the cost of normal displays – the Furzey display was backed by their own fundraising efforts and the skill of the gardeners came down to the help they receive as part of their residential care in Minstead, in the New Forest.

 

Designer of the exhibit, Chris Beardshaw, was quoted as saying: “It’s so important that the skills of the people who have been building this garden are recognised and celebrated.”

 

And that’s a sentiment that is absolutely echoed by all the agencies and support services out there that exist for those with learning disabilities.

 

The motto of the Minstead Training Project is ‘Preparing adults with learning disabilities for greater independence’ – a key feature within other support services and networks around the country. Only by equipping families and individuals with learning disabilities with the skills and confidences to live their own lives, can they achieve a higher, and hopefully happier, quality of lifestyle.

 

Other organisations, like United Response, hold this core value too. They do their best to assist individuals with learning disabilities in finding places through a variety of work schemes, as well as housing associations, in order to give them a true sense of independence.

 

The win at the flower show is a fantastic example of what can be achieved with the right support at hand. Reverend Tim Selwood, from Furzey Gardens, said it best by declaring: “They can be up there with the best of them.”

 

Of course with recent cuts in funding to schemes such as the Minstead Training Project, it’s important to make this point as loudly and as clearly as possible. There have been so many success stories for those with learning disabilities. It should have local authorities and the government turning quickly to offer more funding.

 

We can only hope that the RHS Chelsea win, being on such a national stage, might help point the spotlight in the right direction, and rally more support for the individuals and families currently dealing with learning disabilities in their lives.

Winterbourne View: Sentencing Begins

October 22, 2012

The sentencing of 11 care workers who admitted maltreating patients at a private hospital has begun at Bristol Crown Court.

The defendants were detained after secret filming by BBC Panorama at Winterbourne View, near Bristol.

They face 38 charges of either neglect or ill-treatment of people with severe learning difficulties.

Judge Neil Ford QC, the Recorder of Bristol, said the sentencing hearing could last up to five days.

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

A serious case review published in August condemned the hospital’s owner, Castlebeck, for putting profits before care.

Castlebeck said the criticisms in the report were being “actively addressed”.

The defendants are:

Michael Ezenagu, 29, from Shepherds Bush, west London; Wayne Rogers, 31, of Kingswood; Alison Dove, 24, of Kingswood; Graham Doyle, 25, of Patchway; Jason Gardiner, 44, of Hartcliffe; Daniel Brake, 27, of Downend; Holly Laura Draper, 23, of Mangotsfield; Charlotte Justine Cotterell, 21, from Yate and Neil Ferguson, 27, of Emerson Green have all admitted ill-treating patients in their care.

Sooaklingum Appoo, 58, of Downend, and Kelvin Fore, 33, from Middlesbrough, pleaded guilty to wilfully neglecting patients in their care.

All are currently on bail with the condition that they are not allowed to work or seek work with vulnerable people.

Disability Hate Crime Victim Is ‘Trapped’ And Can’t Take It

October 22, 2012

3D Printers Could Help People Walk Say Researchers

October 22, 2012

A team at Glasgow Caledonian University says revolutionary techniques can be used to produce insoles and splints which could help millions of people with disabling foot and ankle conditions.

They are using 3D printers to produce orthotic devices which are more supportive and quicker to make.

BBC Scotland’s health correspondent Eleanor Bradford reports.

Tasered Blind Man Colin Farmer To Sue Police

October 22, 2012

A blind man who was Tasered by a police officer in Lancashire when his white stick was mistaken for a sword is suing the force.

Colin Farmer, 62, was stunned by a policeman after reports were made of a man walking through Chorley with a samurai sword on 12 October.

Ch Supt Stuart Williams said the force “deeply regrets” the incident and an urgent investigation was under way.

Mr Farmer was taken to hospital for treatment and later discharged.

McMillan Williams Solicitors, which describes itself as a specialist in Taser-related injuries, is representing Mr Farmer in his civil claim for compensation.

Taser withdrawn

His solicitor Sophie Khan said: “I have spoken to Lancashire Police and the IPCC this morning and I will be writing to them later this afternoon.”

Lancashire Police said it had not received any paperwork yet.

A force spokesman said the incident was being investigated and the officer’s Taser had been withdrawn.

The case has also been referred to the Independent Police Complaints Commission (IPCC).

Mr Farmer, who is registered blind and has suffered two strokes, said he had thought he was being attacked by thugs when it had happened.

He was walking to a pub to meet friends at the time and said the Tasering had forced him to drop his stick and fall to the ground.

He said the experience had left him “shaking like a leaf” and scared to go outside.

Ch Supt Williams said the police force had “clearly put this man through a traumatic experience”.

Failed to stop

He said the force had “received a number of reports that a man was walking through Chorley armed with a samurai sword”.

A policeman thought he had found the suspect and discharged the Taser after the man failed to stop at the officer’s request, Ch Supt Williams said.

Mr Farmer was taken to Chorley Hospital after it “became apparent that this man was not the person we were looking for”.

A man carrying a samurai sword was later arrested on suspicion of being drunk and disorderly.

Paralysed Rider Returns To Dartmoor

October 22, 2012

A jockey from Devon who was left paralysed from the chest down following a fall has finally achieved her dream of riding on Dartmoor again.

Sarah Gaisford, from Buckfastleigh, fell at Exeter racecourse five years ago.

A year earlier Ms Gaisford had won Tavistock Point-to-Point.

” A horse broke me and they are going to heal me,” she said.

Eight Out Of Ten Disabled People Fear DLA Loss

October 22, 2012

Eight-in-10 people claim losing their disability living allowance (DLA) will drive them into isolation, a coalition of 90 disabled people’s groups says.

In a survey of more than 4,500 UK disabled people, the Hardest Hit campaign found nine in 10 fear the DLA loss will be bad for their health.

The DLA is to be replaced in 2013 by the personal independence payment.

The government said money was too often wasted on overpayments where people’s conditions have changed.

At Prime Minister’s Questions last week, David Cameron spoke of the plan to give more money to “severely disabled children” and a lower amount for less disabled people, which “showed the right values and the right approach”.

‘Vital’ support

The DLA is divided into two components – care (between £20.55 and £77.45 a week) and mobility (between £20.55 and £54.05 a week). Claimants may qualify for one or both components.

Exact details of how the personal independence payment (PIP) will be allocated have not yet been revealed and those wishing to claim it will have to go through a reassessment of their needs.

The Hardest Hit campaign, an alliance of disability charities and grassroots organisations, fears the new PIP will see the criteria for eligibility changed to the detriment of disabled people.

In its report, the Tipping Point, the group claims up to 500,000 people will lose out on “vital support” when the DLA is scrapped.

“Disabled people and their families are struggling to make ends meet and feel increasingly nervous about the future,” the report says.

Its survey found 65% of respondents who were in work said without the DLA they would not be able to work and three in 10 said without the DLA their carer would not be able to work.

Three-quarters of those surveyed said losing the allowance would mean they would need more social care support from their local council.

‘Debt and isolation’

Jaspal Dhani, chief executive of the UK Disabled People’s Council and co-chair of the Hardest Hit campaign, said: “Disabled people, those with long-term conditions and their families are already at risk of hardship and face massive barriers to getting into work and education.

“Cuts to the support they depend upon risk pushing them into poverty, debt and isolation.

“The chancellor has just announced a further £10bn cut to the welfare budget. With £9bn having already been removed from disability benefits and services in this Parliament, disabled people are already at a tipping point.

“The government has some urgent choices to make, but must rule out targeting disabled people for further spending cuts in the next Budget and Comprehensive Spending Review.”

Minister for Disabled People Esther McVey said there were a lot of misleading stories about the impact of welfare reforms on disabled people.

“The truth is – as the Paralympics showed – the UK continues to be a world leader in the rights for disabled people.

“However, too often under the current system we are wasting money on overpayments where people’s conditions have changed, with £630m a year on DLA alone.

“Our welfare reforms will ensure the billions we spend better reflect today’s understanding of disability and offer the targeted support disabled people need to live independent lives.”

The Hardest Hit campaign is made up of more than 90 disabled people’s organisations and charities such as Sense, the RNIB and Mencap.

Winterbourne View: Earlier Abuse Found At Hospital

October 22, 2012

The family of a man who was punched in the face as a patient at a private hospital in Bristol is calling for the incident to be re-investigated.

Eleven care workers are to be sentenced later for the maltreatment and neglect of five patients at Winterbourne View.

But a BBC Inside Out investigation has found evidence of alleged abuse involving different staff members.

Police have agreed the assault on Ben Pullar was “not acceptable” but said they would not re-open the case.

Mr Pullar is autistic and bi-polar, with severe learning difficulties, and when he was 18, he spent almost a year at Winterbourne View from July 2009.

He lost two teeth when he was punched in the face.

His twin, Tom, said his behaviour changed drastically after going to the hospital.

“He’s burst out crying on me and demanded to talk about Winterbourne View – and this is two years after Winterbourne View – so it still affects him today,” said the 21-year-old.

‘Teeth pushed back’

The BBC has seen daily care notes from his time at the hospital which state Mr Pullar “had an accident with his teeth” just weeks after he arrived.

His family said they were given mixed messages about what happened and were told at one point he had “bitten the floor”.

He was taken to Bristol Dental Hospital by Winterbourne View staff as an emergency patient, and two doctors there raised the alarm with the authorities because of the severity of his injuries.

Senior dental consultant Dr Jane Luker said: “I think they thought the injury he sustained wasn’t consistent with what they were being told.

“He had allegedly bitten a carer and the injuries were sustained from him biting that carer.

“[But] because the teeth were pushed back palatally, towards the back of the mouth, it would be consistent with a punch or a blow to the front of the face.”

The authorities met several days after Mr Pullar was assaulted, but his family was not invited.

Tom Pullar said: “I think that care staff are supposed to care for patients, not punch them.”

‘Acted instinctively’

Notes obtained by Inside Out said the nurse was bitten and retaliated in order to remove his fingers – and later, that he had pushed and pulled to get them out.

The nurse involved, Maxwell Nyamukapa, was suspended and later reinstated. Despite repeated attempts to contact Mr Nyamukapa, he has refused to comment.

The police logged it as an assault, and said the nurse had acted instinctively and in self-defence.

Forty concerns were raised about patients in just over three years with the local safeguarding board run by South Gloucestershire Council.

The police were also contacted 29 times, nine of those times related to carers suspected of using restraint of involved in violent incidents with patients – including Mr Pullar.

Det Ch Supt Louisa Rolfe, of Avon and Somerset Police, said: “We have carried out an extensive investigation into incidents at Winterbourne View and no stone has been left unturned.

“We consulted with the CPS and our partners in terms of action we could take.

“Looking back on that incident now and understanding the whole pattern of what was happening at that residential hospital, it is clearly not acceptable.

“However, at the time, the officer was dealing with information, reliable information, that came from patients and carers, and that came from other experts in that field. And perhaps they relied upon that information too much.”

She added: “We accept that there is learning for us as an organisation and we will do things differently in future.”

Det Ch Supt Rolfe said the force had carried out an extensive investigation into incidents at the hospital and had improved how it dealt with people with learning disabilities.

The council has declined to comment on Mr Pullar’s case.

Castlebeck, the hospital’s owner at the time, said its new board and management had already, and would continue to, rigorously review what happened at Winterbourne View.

The firm said if any other matters come to light, immediate action would be taken and the appropriate authorities informed.

It has also referred Mr Nyamukapa twice to the Nursing & Midwifery Council, who declined to comment.

Parkinson’s Man Completes 3300 Mile Cycle Trip

October 22, 2012

A 40 year-old man with Parkinson’s has completed a 3,300-mile endurance challenge across the US.

Alex Flynn set himself a series of challenges, after being diagnosed in 2007, hoping to raise awareness of the condition.

Starting in Santa Monica, California, his latest challenge saw him climb the 4,421-metre peak of Mount Whitney, run 135 miles through Death Valley, and kayak a portion of Lake Eerie.

He completed the rest of the journey by bike, over the course of 36 days. BBC One’s ‘The One Show’ followed his journey.

My Review Of Edge Of The City By Fiona Firth

October 22, 2012

My review of Fiona Firth’s very good book, Edge Of The City, has just gone live at Disability Horizons.

DWP Reveal Confidential Information To General Public

October 22, 2012

Hmmm…