The Independent has today published figures showing that 87% of tip-offs to the DWP about benefit fraud were closed because there was little or no evidence of fraud.
In the two financial years 2015-2017 a total of 332,850 cases were closed after reports by members of the public.
Of these, a total of 287,950 were found to have little or no evidence to support them.
The Independent does not say what happened with the rest.
However, many of those will have been investigated and found not to have involved fraud either, once the evidence had been properly examined.
There is no doubt that the political and media driven hatred of claimants has led to a huge number of reports by prejudiced neighbours and even friends and relatives.
It is also certain that in some cases the anonymous tip-off is made by someone who knows it isn’t true but simply has a grudge to settle.
Even where no action is taken, any claimant who has been subject to a fraud investigation can attest to what an utterly distressing experience it is.
Because the source of the allegations is never disclosed it can also leave claimants feeling deeply distrustful of everyone around them.
The fact that almost nine out of ten allegations are unfounded clearly indicates that an anonymous tip-off system has no place in a civilised benefits system.
There are many heartbreaking moments in this beautifully written book, but the first comes before it even begins. In a dedication to her son Louis, author Alison White says how she wanted to write it so that people would understand disability and caring, but also, “to be totally honest, I wanted to write something that would make people consider being Louis’s friend”. Beneath that simple plea lies the great fear of so many parents who nurse a severely disabled child through to adulthood: “What will happen when I’m gone?” It’s a measure of this unsentimental and clear-eyed account that White never labours this point, or any other of the myriad anxieties that accompany long-term caring. Instead, she just tells us what it’s like: and it is, in equal measure, admirable, uplifting, terrifying.
White’s story begins with Louis’s premature birth and an account of his time in an intensive care unit, where he comes close to death. When the story moves back to the later stages of White’s pregnancy and the catastrophic failure of a midwife to check White’s blood pressure at a vital moment, you are already primed to shout at the page: “Check her blood pressure, for God’s sake!” White goes into pre-eclampsia, a condition that can be fatal for mother and child, and Louis is later diagnosed with cerebral palsy.
As a society, we are fond of eulogising short-term heroism: the soldier or firefighter, bravery containable within a single story. The uncomfortable truth that Letter to Louis lays bare is that the heroism of long-term stamina, the daily caring over many years, is neither tidy nor anecdotal. At times, with two other children to care for and Louis waking five times a night, still undiagnosed and in constant pain and distress, White feels simple despair. “I picture the cliff. I picture jumping holding you tight in my arms, falling and falling through the air.”
Although there are moments of joy – when Louis first speaks, manages to walk a little – White offers no comforting platitudes. “My destiny has been decided. The realisation hits me full force in the stomach. I don’t want this destiny.” Very soon, you come to admire White’s fortitude not only in raising a child with a disability but in resisting the temptation to punch one or two of the many idiots she encounters along the way: notably a Clarks shoe shop assistant who refuses to sell Louis, a wheelchair user, a pair of shoes because he can’t walk across the room for her to check the fit, and an unspeakably unhelpful occupational therapist who won’t authorise the toileting equipment that he needs, insisting he has to learn to wipe his own bottom, even though it is a physical impossibility for him.
It is shocking to learn that at Louis’s most disabled, after a disastrous foot operation, the family are only entitled to two hours’ help a month. Respite care only comes, eventually, when they are close to breakdown. At one point, Louis has five different social workers in eight months – and then, unbelievably, faces the overnight withdrawal of all respite care when he reaches his 18th birthday.
Conversely, White explains the difference that the support of family and friends and small acts of kindness from strangers can make. When she takes Louis on a special day trip to London because he wants to travel on the tube, Transport for London staff take it upon themselves to radio ahead to each other to make sure there is always someone to help them at each station he wants to visit. Once in a while, a therapist or doctor actually listens to White’s knowledge and expertise regarding her son’s condition.
Eventually, though, the devastating long-term consequences of constant sleep deprivation and caring take their toll. A slightly mysterious chapter towards the end of the book sees the author disappearing to Edinburgh to walk and sit in cafes: it’s never stated overtly whether this is for work or because she has had a breakdown or a combination of the two. The wonder is only that it has taken so long.
This chapter is just one of the half-told stories in this book: the author is mindful of the need to protect the privacy of her husband, although it is clear their marriage has come close to breaking point many times, as anybody’s would, and that of her other two children. Beneath it all is a cold fury that any decent-minded reader will share towards a society that fails to understand that unless carers are properly cared for by the rest of us, it all unravels.
Above all, this book is a plea for understanding, for the rest of society to pause a while when they encounter someone like Louis or his parents. The huge difference a kindly word or helpful act can make – and the devastation a thoughtless act can cause – cannot be underestimated. This book is an essential read for anyone who has ever moaned about their taxes going to pay for disability services: it should be legally required reading for anyone in the medical profession or anyone with the power to decide about cuts to those services. The rest of us should read it for an acute insight into just how lucky we are.
The Cranberries lead singer Dolores O’Riordan has died in London at the age of 46, her publicist has confirmed.
The Irish musician, originally from Limerick, led the band to international success in the 90s with singles including Linger and Zombie.
A statement from her publicist said: “The lead singer with the Irish band The Cranberries was in London for a short recording session.
“No further details are available at this time.”
It added: “Family members are devastated to hear the breaking news and have requested privacy at this very difficult time.”
The Cranberries shot to international fame with their 1993 debut album Everybody Else Is Doing It, So Why Can’t We? and went on to sell over 40 million records worldwide.
Irish rock band Kodaline were among the first to pay tribute on social media.
In 2017 The Cranberries announced a tour including dates in Europe, the UK, and the US.
However, in May 2017, shortly into the European tour, The Cranberries had to cancel the remainder of the European dates as a result of O’Riordan’s health issues.
The official Cranberries website cited “medical reasons associated with a back problem” preventing singer Dolores O’Riordan’s from performing.
But just before Christmas O’Riordan had posted on Facebook saying she was “feeling good” and had done her “first bit of gigging in months”, leading fans to believe she would soon be performing again.
O’Riordan split from her husband of 20 years, Don Burton in 2014. She and Burton, who is the former tour manager of Duran Duran, have three children together.
The singer suffered from bi-polar disorder and was spared a criminal conviction after an air rage incident in 2014.
Just before Christmas claimant RF won a vital high court challenge against changes to the law relating to PIP mobility. However, the victory could still be overturned on appeal, meaning there has not been any change to the way PIP is awarded yet and there is another case know as MH which could also have an effect.
Background Early in 2017 an upper tribunal of three judges clarified the law relating to ‘Going out’ in a way that was favourable to claimants who become very distressed when attempting to plan and follow journeys.
Amongst other things, the tribunal decided that claimants who need help with familiar routes because of overwhelming psychological distress could be eligible for the enhanced mobility component.
However, the government almost immediately changed the law in an attempt to reverse this decision.
They also appealed against the decision, in a case known as MH, which is likely to be heard in June 2018.
The change in the law consisted of adding the words ‘For reasons other than psychological distress,’ to three descriptors
The aim of the DWP was to ensure that claimants who have difficulties with following journeys because of psychological distress are less likely to get an award of PIP on those grounds.
The RF case On 21 December 2017 the changes to the legislation were found to be unlawful by the high court in a judgement known as RF.
The high court found that the changes discriminated against people with certain disabilities, in breach of the Human Rights Act. The court also found that the government broke the law by not consulting on the changes first.
The DWP can seek to appeal against this decision and we should find out fairly soon whether they have been given leave to appeal.
Until leave to appeal has either been refused, or the appeal has been granted and heard, the law will stay as it is currently and claimants with mental health conditions will continue to be discriminated against.
The MH case However, matters are further complicated by the fact that, as explained above, the DWP have appealed against the original upper tribunal decision that prompted the DWP to change the law. That case is known as MH
If the DWP win the appeal in MH then it will no longer make any difference whether they lose RF or not.
In other words, things will not improve for claimants unless the DWP lose both the appeals in MH and in RF. If they win either then the law continues to discriminate against some claimants with mental health conditions.
On the bright side There is a positive side, however.
The high court came down very strongly in support of the claimant in RF. So, even if the DWP do manage to get an appeal heard there is a strong chance they will lose RF again.
Meanwhile, the arguments relating to discrimination in MH are very similar to the ones in RF, so there is a good chance that the DWP will fail in their attempt to overturn the upper tribunal decision.
So, there is a real possibility that claimants will win both cases.
But, the complexity of the legal situation, and the option of further appeals to even higher courts, does mean that the law may not change for a long time yet.
Lodging your own appeal In the meantime, if you lose out as a result of the changes to the law, then it would definitely be worth seeking advice about appealing the decision.
It is likely that any appeal on these grounds will be put on hold until the current legal mess is untangled, but if the claimants succeed in both cases then your appeal will eventually be heard.
There’s more information about the changes to the law in our guide to claiming PIP in the members area.
I am not sure that I had a true moment of realisation when it comes to being gay; it is just something I have always been.
I assumed that what I felt for certain girls was just what every other girl felt for her special friends … and didn’t we all want to marry Pocahontas? My parents teased me mildly about having “intense” friendships with a different girl every few months, but they are incredibly liberal and have enough gay people in their lives that it never felt that special when I hit my early teens and started wanting to kiss girls.
I don’t think my family expected me to be one way or the other, so being an out lesbian was probably the least interesting part of my teenage years.
Being aware of my disabilities was also gradual – I had a lot of problems with my hearing as a baby, including my eardrums bursting on a number of occasions. After a few operations on my ears and eardrums, I was able to hear relatively well from the ages of five to 15 – so the songs I know best are, sadly, very late-90s/early 00s – although adults often complained that I was “dreamy” and “not listening” when I realise now I just couldn’t hear them. I started to lose my hearing again at 16, but didn’t realise it until I began university three years later.
It seems funny to think that I didn’t realise, but I was struggling with a lot of other health problems at the time and as I spent most of my time in bed – either at home or in hospital – the only thing that noticeably changed was the volume at which I watched TV.
When I finally managed to make it to university and started interacting with people who were not my immediate family, it was painfully obvious that I couldn’t hear what they were saying and that, when it came to conversation, I had pretty much been operating on guesswork for quite a while.
I am not profoundly deaf and, obviously, can hear more with my hearing aids in, although they only make things louder, not clearer. I can’t hear any high-pitched sounds and, with my hearing aids in, I only properly catch one word in three.
When I was 17, I was diagnosed with hereditary neuropathy with liability to pressure palsies (HNPP), which results in extreme palsy in my arms as well as patches of skin being numb, difficulty gripping things, weakness in limbs and severe fatigue. I also have mixed connective tissue disorder (MCTD), an autoimmune disease in which the body’s defence system attacks itself. MCTD causes chronic joint pain, muscle inflammation, hypermobility and pulmonary hypertension alongside a long list of other symptoms.
My disabilities can hamper everything I do, but they are often invisible, although I don’t think the days I have to use a wheelchair or wrist splints make them visible – they are just my aids.
I often have to explain myself when strangers think I am just being difficult. I get scoffed at in the street when I don’t hear someone behind me or I walk into them because they are on my blind slide. I have been called out loudly by non-disabled people for using disabled toilets or parking spaces, challenged for being a picky eater when I cannot eat an ingredient in their food and yelled at for being inconsiderate. It doesn’t matter when I explain that I am not just dozy or silly, but have a disability, because they have already worked themselves up into a self-righteous rage and nothing I can say will stop that.
It also hurts to have to explain painful, long and complicated reasons behind injuries when people expect a light-hearted story. “What happened to your hand? Accident while out on the town?”
“No.” Deep breath … “I have a disability that affects my nerves and …” Although, to be honest, often I just lie.
When someone confronts you, asking what right you have to use a disabled toilet or why you were so stupid you didn’t hear them asking you to get out of the way, your only options are to stand there and let them yell at you (plus points of being deaf: turn your hearing aids off and you only have to see the yelling) or you attempt to explain that you are disabled, which can be a pretty personal thing to share with a mean stranger who might not believe you anyway.
I understand that I look fine, but when most of the difficulties in my life come from the very fact that I look fine while actually needing help, that is not really a bonus.
Telling someone I am gay is instantly accepted, no questions asked, generally with a smile. Telling someone I am disabled comes with, “No, really? You don’t look it”, and a scrutinising look. Nobody has ever accused every single gay person of “scrounging off the state”, but people have openly said that about disabled people, in front of me.
I definitely feel that there is a desexualisation of disabled people. When I was still dating, I could see the moment in my date’s eyes when I explained my condition and suddenly stopped being an interesting potential prospect. I think disabled people are not just taboo when it comes to sex, but also dating, relationships and life in general. My wife is often told that she is a saint for marrying me or that she must be such a good person – as if I am a terrible burden and not the woman she loves. Businesses, the media and politicians need to start seeing disabled people for what we are: useful members of society who have something to bring to others.
I have always been an out-there dresser. I have probably toned it down now – I am less eccentric than I was. It has always felt important to spend time on my style because it is one thing about my body that I can control.
I believe in soft activism rather than shoving a message in people’s faces and telling them they should change their opinion. I think it is better to subtly insert small changes into our everyday lives, such as having more disabled characters featured in the media – and in instances where being disabled is not the main story. We should have more disabled MPs, because although almost one in five people in the UK are disabled, we are underrepresented, especially since the Conservatives shut down the access to the elected office fund, which helped people with disabilites to go into political jobs.
I missed most of my teenage milestones because I was either in hospital or lying in the dark. I was too ill to open my eyes, to sit up or to eat, and I was made to feel like a burden, as if my presence was a hindrance to other people’s lives.
I was never a problem to my parents or brother, but they would be told, “How good you are to look after her” while I was in the room. But there were some amazing people who stepped into my lonely space, took my hand and helped me through those rough years. They didn’t mind helping out physically or spending time making me laugh and always let me know it was no big deal. I was never a burden to them.
I am so much better than I was but I still need help and I know the best way to repay that help is to live the best life I can – to be brave, to be bright, to be happy. I am proud of everything I have achieved and where I am now.
The controversy over Toby Young’s appointment to, and then resignation from, the Office for Students, and especially his comments about wheelchair ramps in schools, dyslexic students and accessible assessments, indicates how rife disability oppression remains in our cultural and educational institutions. There is a direct connection between negative writing about disability – stereotypes, prejudices, hate speech – and the treatment of disabled people in society. Reading literature provides one window on to the narratives about disability that circulate across cultures and throughout history.
King Richard’s soliloquy at the start of Richard III is one of the most dramatic openings of any piece of literature. From the play’s very first lines, Shakespeare stresses that his central character is vengeful, vindictive and morally vacuous. Richard tells us that he is “determinèd to prove a villain”, and everything that follows, it is made clear, will be part of the pursuit of this determination. But Richard spells out specific details that help us understand his hatred. He is, he observes, “not shaped for sportive tricks”, but rather is “rudely stamped”, “deformed, unfinished”, “scarce half made up” and “cheated of feature by dissembling nature”. Richard is disabled, and the fact of his disabled difference is given as an explanation for his desire to be “subtle, false and treacherous”.
Many literary villains are disabled, providing a metaphorical shortcut to ideas of deviance, bitterness or desire for revenge. So Richard’s soliloquy is not actually signalling that the play is a text about a man with disabilities. Here an “unfinished” body is more about Richard’s character than any real sense of embodied experience. It is treachery, rather than disability, that his “deformations” signify.
Disability is everywhere in literature, across all periods and genres, whether in medieval saints’ narratives, the sentimentality of the 19th-century novel, modernist obsessions with eugenics or contemporary preoccupations with mental health. Often in these stories disability appears in the same way as it does in Richard III, namely as a narrative device that illuminates what appear to be more “important” elements of plot or character. Often it exposes the anxieties or preoccupations of the historical moment. So, for example, Tim Cratchit, the disabled child in Dickens’ A Christmas Carol, facilitates that novel’s meditation on greed, wealth and charity even though he barely features. Likewise, Bertha Mason, Charlotte Brontë’s “madwoman in the attic” in Jane Eyre, has been read as expressing the outrage of gender- and race-based oppressions, while Rochester, who loses a hand and is blinded at the end of the novel, allows for the exploration of questions of romance and care. Captain Ahab’s prosthetic leg in Melville’s Moby-Dick is not simply the sign of a historical encounter with the great white whale; it is far more meaningful as a marker of the mania and obsession that will lead Ahab to pursue his quarry to the point of his own death.
In these texts and others disability is fundamentally transparent, something to be looked through to discuss other concerns. The lens that disability provides might make readers think more about “being human”, or provoke ideas of shock, fear, deviance or pity, but at heart these are understood as “universal” issues rather than anything specific about disability experience. In Lawrence’s Lady Chatterley’s Lover, Clifford Chatterley’s paralysis and wheelchair use are both a commentary on the barbarity of the first world war and the sterility of the Chatterleys’ marriage that licenses Constance’s explorations; Clifford’s actual experience of his wheelchair is less important than the wider contemplations it makes possible.
Disability has so often been represented in such metaphorical terms that it can seem almost invisible. Every crime novel with a scarred villain, or melodrama whose sentimentality relies on a “retarded” child, doesn’t require an actual engagement with the details of such difference. Readers, well attuned to the conventions of genre, understand that the lives of such characters are not as important as what they symbolise. As such, literature can mirror and perpetuate those social processes by which people with disabilities are marginalised and excluded.
But just as the end of the last century saw the rise of disability rights movements, so it heralded changes in the ways literature presented physical and cognitive difference. Life writing about disability and mental health formed a major part of the memoir boom of the 1990s, while fiction, drama and poetry embraced the narrative possibilities that came with disability viewpoints. Writing from within first-person disability perspectives is not a contemporary phenomenon: people with disabilities have always written about them – think of Milton or Joyce on blindness, and indeed the very shift in our thinking about literature that comes from seeing these two writers as having disabilities; while Faulkner’s The Sound and the Fury is a famous example of experimental disability writing from the 1920s.
But it has become a more common technique in the last few decades. Katherine Dunn’s Geek Love, for example, is narrated by a performer in a freak show, enabling a subversive and satirical commentary on the exclusions and prejudices of American society. Arguably the best known text that uses cognitive difference to shape its narrative viewpoint is Mark Haddon’s hugely successful The Curious Incident of the Dog in the Night-Time. The novel, recounted by its protagonist, is full of alternative perspectives and ways of seeing the world that autism, a condition seemingly beyond biomedical knowledge for most of the 20th century, is now understood to possess. In such writing, disability is conceived as difference and not deficit. It is not seen as a tragedy to be overcome or a disaster to be feared. In the best contemporary writing about disability, such difference is shown to be often mundane and ordinary. A disabled life is one among many.
Representation matters. In a time when the logic of austerity demands endless efficiency, and with Brexit threatening to reshape everything from local economies to human rights legislation, it is more important than ever to think about how disability is represented in our society: in the media; in fiction; in television and film; in political discourse and public policy. People with disabilities are frequently used as scapegoats, blamed for being a drain on stretched resources in order to mask insufficiencies in health, education and welfare provision. Media hysteria around the idea of benefit scroungers has fuelled a resurgence of Victorian ideas about the undeserving poor. People with disabilities are unproductive, cheat the welfare system, are a burden and should not be supported by the state. In the spirit of nationalist pride, we are invited to celebrate the achievements of our “supercrip” Paralympians while (as many activist athletes point out) “ordinary” disabled people are losing their income and their housing to cuts.
These ideas, and the policies they underpin, are not new. Literature gives context for understanding such confused and conflicting contemporary discourses. It helps trace where stereotypes and oppressions have come from and how they have evolved. Dominant ideas about disability don’t necessarily reflect the reality of lives and capabilities, but fit the political agendas of particular times and places. We can find in literature endless examples of the prejudices that surround disability, but we can also encounter the complexity of the world of people with disabilities and the rich and vibrant histories they make. Reading, as an engagement with imagined possibilities, makes for better understanding of the shades of human difference that disability highlights.
Esther McVey, the deeply detested former minster for disabled people and employment minister, has become the new secretary of state for work and pensions in the current cabinet reshuffle.
McVey lost her Wirral West seat in the 2015 general election.
She was one of the few high profile tory losses and her failure to hold her seat was blamed in large part on her deep unpopularity with claimants whom she had been happy to portray as bogus.
In March 2013, following her appointment as minister for disabled people, a Daily Mail article with the headline: “I will go after the bogus disabled . . . some of the DO get better” went on to explain:
“She says many who get DLA and are officially classed ‘disabled’ are no such thing: ‘Only three per cent of people are born with a disability, the rest acquire it through accident or illness, but people come out of it. Thanks to medical advances, bodies heal.’”
But it was her comments in a debate in December 2013 that caused the greatest outrage.
McVey was left to speak in a debate about food banks after IDS left the chamber half way through and was accused by the press of ‘smirking’ whilst Labour MPs told of the plight of their constituents.
McVey told MPs:
“In the UK it is right that more people are… going to food banks because as times are tough, we are all having to pay back this £1.5 trillion debt personally which spiralled under Labour, we are all trying to live within our means, change the gear and make sure that we pay back all our debt which happened under them.”
McVey was parachuted into the safe Tatton constituency of George Osborne following his resignation in 2017.
The work and pensions post was originally offered to former education secretary Justine Greening in the current reshuffle, but she resigned sooner than accept it.
McVey replaces David Gauke, who only became secretary of state for work and pensions in June 2017.
McVey is the fourth person to hold the post in less than two years and the third to be appointed by Theresa May, giving a clear indication of how little importance is attached to the role.
Following his appointment to the OfS, Mr Young deleted up to 40,000 tweets posted since 2009, including references to the size of women’s breasts.
Comments made about working class students, about “inclusivity” in a Spectator column in 2012, and remarks aimed at gay people, were also criticised.
Who is Toby Young?
Toby Young started out as a journalist founding the culture magazine Modern Review with Julie Burchill.
Following the collapse of the magazine he was recruited to work on Vanity Fair in New York, an experience that inspired his book “How to Lose Friends and Alienate People”.
As a Spectator columnist, Mr Young made a number of controversial comments including a description of wheelchair ramps as part of “ghastly” inclusivity in schools.
In 2011 he set up the West London Free School which placed importance on discipline, ambition and “a competitive atmosphere”.
After resigning from his position as CEO of the West London Free School Trust, he said he hadn’t “grasped how difficult it is to do better” and that he regretted his earlier criticism of teachers.
His experience with schools led to his appointment to the Office for Students regulator – a move critics argued he was neither suitable nor had the right expertise for.
Chair of the Commons education committee Robert Halfon said remarks Mr Young had made on disability, eugenics and working people went too far.
“If we are to stand up as the Conservative party for what is right,” he told BBC Radio 4’s Today programme, “we also have to accept when we have made a mistake”.
Sir Anthony Seldon, vice-chancellor of Buckingham University, said it was “utterly unacceptable” to have such a person on a public body, involved with education.
In his resignation article, Mr Young said “the caricature” drawn of him during the past week was “unrecognisable”.
He wrote: “I am a passionate supporter of inclusion and helping the most disadvantaged, as I hope my track record of setting up and supporting new schools demonstrates.
“But some of the things I said before I got involved in education, when I was a journalistic provocateur, were either ill-judged or just plain wrong – and I unreservedly apologise.”
Mr Young thanked Prime Minister Theresa May and the former education secretary Justine Greening for their support.
Toby Young wasn’t appointed directly by the prime minister, but the pressure was on her to sack him when the details of his previous remarks emerged.
Her decision to defend his position – while criticising his past comments – allowed opponents to once again question her judgement and authority.
Mrs May’s supporters have pointed to Mr Young’s achievements in the field of education and said his resignation was a matter for him.
It’s unlikely it will have huge or lasting consequences for the prime minister, but just two days into Westminster’s new year it’s an unwelcome distraction from the authoritative image Mrs May wants to portray, and it adds to the overall perception of a government where things don’t tend to run too smoothly.
The Office for Students has been established to hold universities to account on issues like vice chancellors’ pay and free speech on campus.
It has powers to fine universities which fail to meet the required standards.
Critics have welcomed the resignation. Angela Rayner, Labour’s education spokeswoman, said events “cast great doubt” on Mrs May, who, she said, had failed to sack him in the first place.
University and College Union general secretary Sally Hunt said Mr Young was right to resign and the “whole sorry episode poses serious questions about the appointments to the board of the Office for Students”.
Liberal Democrat leader, Vince Cable, called the appointment “a serious mistake“.
But others have scorned the furore.
Piers Morgan said Mr Young had been forced out by the “howling Twitter mob”.
“I don’t defend his more offensive tweets or columns,” the Good Morning Britain presenter wrote, “but I do think he would have brought a valuable and distinctive perspective to university education”.
Universities minister Jo Johnson said Mr Young’s resignation and apology “reflects his character”.
Irish movie Sanctuary is the story of a group of learning disabled people from a day centre.
Close to Christmas, the group are taken on a trip to the cinema by their care worker, Tom (Robert Doherty).
Tom has arranged for two members of the group, Sophie (Charlene Kelly) and Larry (Kieran Coppinger) to sneak out and spend some time alone together in a hotel room. There, he learns that they plan to have sex. However, it is illegal for unmarried learning disabled people to have sex in Ireland. There is a good reason for this law, and this reason is explored in some detail in the film.
Sanctuary raises some very interesting questions about love, sex and disability, as well as safety and responsibility.
What makes someone a good carer for people with disabilities? Is it taking responsibility for them and enforcing rules, or standing up for their human rights and treating them like human beings?
Can learning disabled people really feel and understand love? Can they really understand what it means to consent to sex? Sanctuary shows us that when they feel safe, the answer to both questions is a loud, clear yes.
What is responsibility and what makes someone responsible?
Is it really important to stay safe and keep the rules? Or is it more important to leave your sanctuary and have an adventure?
With moments of humour and an upbeat, yet romantic soundtrack, this is a film that has something for everyone.
The questions and themes it raises are handled with a rare sensitivity to disability that I, as a person physically disabled since birth, was very pleased to see. The hopeless romantic in me loved its romance, too.
Moin Younis has a rare genetic condition called Epidermolysis Bullosa that causes his skin to tear and blister at the slightest touch. Doctors said he wouldn’t live past his first birthday, he’s now 18. Every morning he goes through an excruciating routine that can last up to six hours. He gave our reporter Ashley John-Baptiste a rare insight into his life and treatment.
Our editor had this personal reaction to the excellent film by the Victoria Derbyshire show:
Mo Stewart – Independant Researcher WCA……..After her letter to Mansel Alyward one of the architects of the WCA and her extensive research and publication of her book Cash Not Care , Mo Stewart has sent a explosive letter to the current Secretary Of State David Gauke. I have been granted permission to use it for my blog. One thing that springs to my mind is I would love to be a fly on the wall when he reads this to see his face. For too long now this government as blagged it way to convince the public it is justified to cut benefits to disabled people. This researcher keeps holding them to account.
British Vogue’s decision to mark 100 years since women were granted the vote has received much coverage in the past week. Its Meet the New Suffragettes spread features seven influential females “fighting to empower women in the battle for equality that rages on”: politicians Stella Creasy and Sophie Walker, artist Gillian Wearing, gal-dem founder Liv Little, journalist Paris Lees, blogger Dina Torkia and writer Reni Eddo-Lodge.
The list was widely perceived as displaying the diversity within the modern women’s movement. But on seeing the glamorous photo-spread, I had a sinking feeling. The reason? While women of colour and trans women are included, strikingly not one of those featured is disabled. (Disabilities can also be invisible, but after I asked the author of the piece, to my knowledge none of the women involved identify as disabled.)
It’s heartening to see talented women such as Lees and Eddo-Lodge front and centre in one of the world’s most famous publications – publications that are often heavily white and middle class – but in some ways, that makes it even worse that no disabled woman was included alongside them. It’s telling that no one at the magazine appeared to notice – or care – that a large chunk of the population was essentially missing (there are around half a billion disabled women globally), especially for a story promoting the ongoing “battle for equality”. After all, disabled women still experience some of the highest rates of domestic violence, poverty and exclusion from jobs and public positions.
And new editor Edward Enninful is supposed to be on a mission to address a lack of diversity in the magazine.
But the exclusion of disabled women goes beyond Vogue. Disabled women are rarely featured in the media: even campaigns or content that are purposely striving to include marginalised women routinely miss out those with disabilities. Only last week, Time’s Up – the Hollywood project to fight sexual harassment in the film industry and other workplaces – rallied support for greater representation of women of colour, migrant women, lesbian and bisexual, and trans women, but failed to mention women with disabilities.
Rihanna’s campaign ad for her Fenty Beauty cosmetic last year was rightly praised for its diversity, but no one featured had a disability. It says something about disabled women’s exclusion that we are somehow too marginal even for a conversation about the need to be included.
As a disabled woman watching these otherwise progressive campaigns, it sometimes feels as though we are almost invisible – members of the only group not invited to the party. Rightly or wrongly, this feels all the more painful when it’s a publication such as Vogue, in a culture in which idealised beauty standards traditionally cut out disabled girls as not “pretty” or “normal”. It feels as if, when it comes to the casting call of women, we are being airbrushed out; scrubbed off the picture as not quite right.
All of this matters in a very practical way: if disabled women aren’t included in these high-profile campaigns, our interests are much less likely to be addressed. This media exclusion also has a personal impact on disabled women and girls – who look in from the outside and see no disabled celebrity, campaigner or politician smiling back. When this exclusion happens often, it eventually finds a place inside of you: a shameful message that you’re not quite like other women.
I know as a teenage girl growing up with a disability in the 1990s how rare it was to see a disabled woman – or man – in the media. This has improved in recent years. CBeebies’ Cerrie Burnell, who was born with a right arm that ends below the elbow, has been beamed into children’s living rooms since 2009 (some parents complained that children might be scared of her), while the Paralympian Jonnie Peacock’s recent farewell speech on Strictly Come Dancing – in which he spoke of how pleased he was to be treated just like any other contestant – showed how powerful it can be having disabled people in the public eye.
But there is much further to go. It feels in many ways as if disability is the last frontier of inequality: far from the only inequality to still exist, but the one that frequently isn’t even mentioned. In Vogue’s words, “the battle for equality rages on”, but it should not take another hundred years for disabled people to be invited to stand alongside working-class, trans and women of colour. We need to start talking about this. If only for the young disabled girls who in 2018 pick up glossy magazines and still never see a woman quite like them.
Scientists in Rome have unveiled the first bionic hand with a sense of touch that can be worn outside a laboratory.
The recipient, Almerina Mascarello, who lost her left hand in an accident nearly a quarter of a century ago, said “it’s almost like it’s back again”.
In 2014 the same international team produced the world’s first feeling bionic hand.
But the sensory and computer equipment it was linked to was too large to leave the laboratory.
Now the technology is small enough to fit in a rucksack, making it portable.
The development team included engineers, neuroscientists, surgeons, electronics and robotics specialists from Italy, Switzerland and Germany.
How it works
The prosthetic hand has sensors that detect information about whether an object is soft or hard.
These messages are linked to a computer in a rucksack that converts these signals into a language the brain will understand.
The information is relayed to Almerina’s brain via tiny electrodes implanted in nerves in the upper arm.
In tests Almerina – who was blindfolded – was able to tell whether the object she was picking up was hard or soft.
She told me: “The feeling is spontaneous as if it were your real hand; you’re finally able to do things that before were difficult, like getting dressed, putting on shoes – all mundane but important things – you feel complete.”
This represents another advance in neuroprosthetics, the interface between machine and the human body.
Professor Silvestro Micera, a neuroengineer at EPFL in Lausanne and Sant’Anna School of Advanced Studies in Pisa told me: “We are going more and more in the direction of science fiction movies like Luke Skywalker’s bionic hand in Star Wars – a fully controlled, fully natural, sensorised prosthesis, identical to the human hand.”
A robotic prosthesis better than the human hand is still a long way off, but the team believe it might eventually be a reality.
Prof Paolo Rossini, a neurologist at University Hospital Agostino Gemelli, Rome said: “Once you can control a robotic prosthesis with your brain you can think about creating one that allows more complex movements than a hand with five fingers.”
The researchers paid tribute to Almerina and the other amputees who joined the project.
Almerina was able to keep the bionic hand for six months, but it has now been removed, as it is still a prototype.
The scientific team say they hope to miniaturise the technology even further so that a sensory bionic hand can be commercialised.
Almerina told me that when the bionic hand is perfected, she would like it back for good.
A disabled passenger has branded Stansted Airport staff “disgusting” after she was denied assistance because she “didn’t look disabled”.
Nathalie Allport-Grantham, 23, was flying to Nice with Ryanair on 31 December when a member of staff refused her the assistance she had confirmed ahead of her flight.
She had requested the use of a wheelchair to help her to the gate, as well as assistance carrying her hand luggage onboard the aircraft.
But while she was assigned a wheelchair at check-in, she says it was later taken away from her by airport staff who then told her that she was “wasting their time” by asking for help.
Allport-Grantham suffers from Ehlers-Danlos syndrome, a connective tissue disorder which causes chronic pain and joint dislocation, as well as Marfan syndrome and postural orthostatic tachycardia syndrome – a condition which affects the heart, and can cause dizziness and fainting when the patient is standing.
Although she uses a wheelchair part-time, all are invisible disabilities.
She had confirmed wheelchair assistance when buying her ticket on 5 November, opting not to bring her own chair because the airport would provide one instead. Airlines such as Ryanair log the assistance needs of their passengers, but it is the airports in question that fulfil the requests. Stansted contracts its PRM (passengers with reduced mobility) service to an external provider, Omniserv.
Allport-Grantham – who was travelling with her boyfriend – arrived at Stansted in good time for her 7.55am flight, with her boarding pass specifying that she was a special assistance passenger. She told The Independent that on arrival, staff gave her a wheelchair and asked her boyfriend to push her to the gate – common practice at Stansted for wheelchair passengers travelling with companions.
Staff warned her that there were no lifts available, but assured her that a member of staff would help her up the stairs of the aircraft and carry her hand luggage for her.
The couple made it to a lounge area en route to the gate, where Allport-Grantham transferred from the wheelchair to a more comfortable seat. The wheelchair was quickly taken by an airport employee, who promised to bring it straight back. He never returned, however, and Allport-Grantham was forced to walk to the gate, over five minutes away, where she found two other special assistance passengers waiting to board.
She told The Independent: “I told the lady on duty that I had booked special assistance and needed help with my bags and to get onto the aircraft.
“She looked at me and said, ‘If you want someone to carry your bags, you have to pay £50.’
“I told her I had pre-booked disability assistance and I need help getting onto the aircraft.
“She said, ‘I’m actually waiting for someone who cannot walk, if you want to get on the plane I suggest you queue up like everyone else. If you don’t want to carry your bag, it’s £50 to have it put in the hold.’
“The person she was waiting for was me, but she was expecting someone who looked more ‘disabled’ than I do.
“Then she said loudly, in earshot of everyone at the gate: ‘I’ve got disabled people to help and you are wasting their time’. Everyone was staring. It was humiliating.”
When she said she was not allowed to lift anything for medical reasons – lifting can dislocate her joints, tear muscles or rupture internal organs – Allport-Grantham says the employee told her, “Maybe next time don’t bring a heavy bag then.”
After the encounter reduced her to tears, she says a male airport worker came over to ask what was going on, and the agent said, “This lady is wasting my time.”
The male employee checked Allport-Grantham’s name against the list on the screen and confirmed that she was the passenger they had been expecting. “He was really nice and found me a spare wheelchair, but the lady didn’t even apologise,” she said.
In the meantime, the flight was completing the boarding process, and the other two special assistance passengers were already on the plane. Allport-Grantham had sent her boyfriend – who is French, and was visiting family – on ahead as the wheelchair was being sourced.
Allport-Grantham – who carries a card for use on public transport, informing people of her disabilities – says that she was then wheeled outside to the plane but left in the rain for nearly 10 minutes until baggage handlers had finished loading the hold luggage.
Calling herself “emotionally drained”, she told The Independent that she had contacted Stansted and Ryanair via Twitter. She had received no response from Ryanair, while Stansted had requested more information.
She said: “It isn’t the first time this has happened to me, and I’m sure it won’t be the last. I want to make a fuss because I believe big companies have a responsibility not only to follow the law but also to educate their staff.
“I was gobsmacked by her behaviour. It’s unbelievable that an employee would be so certain that I was faking it that she would speak to me like that.
“People have a sense of entitlement that they ‘know’ who is and isn’t disabled, and if you don’t fit into their idea of disability, it means you’re a liar. It is so sad that people think they know you by just looking at you.
“I would love to be able to carry my own bag, and I would love to be able to manage steps to the aircraft without help.”
A spokesperson for Ryanair said: “While we regret any inconvenience caused, wheelchair services at London Stansted are operated by Omniserv – at great expense to the airlines – and London Stansted is responsible for this service and any problems with it.”
Stansted Airport told The Independent: “Of course, we are very disappointed to hear about Ms Allport-Grantham’s experience and apologise for any distress caused.
“Special assistance is booked directly with the airline and handled by the airport’s PRM provider Omniserv. We are speaking to the provider to find out more about the circumstances of the incident.”
HARDtalk’s Zeinab Badawi speaks to comedian, actor and disability advocate – Maysoon Zayid. She was born in the United States to Palestinian immigrant parents and since birth has been living with cerebral palsy – a condition which affects the brain and nervous system. She believes comedy has the power to transform lives by helping people overcome the disadvantages of being disabled. She also says her stand-up comedy shows help normalise the perceptions of Muslims when many seek to demonise them. Can comedy really do all that and where do you draw the line between what’s funny and what’s going too far?
Writer Toby Young has faced criticism over his appointment to the board of a new higher education watchdog.
The Spectator columnist was praised by the education department for the “vital insights” his record as the founder of a free school will bring to the role.
But he was branded a “Tory cheerleader” by a lecturers union and comments he made in 2012 about inclusivity have sparked a social media backlash.
The Office for Students is due to start work in April.
Its remit is to hold universities to account on issues like vice chancellors’ pay and free speech on campus, with powers to fine universities which fail to meet the required standards.
Working class students
Mr Young, who co-founded the West London Free School in 2011 and runs the New School Network, is one of six new appointments to the regulator’s board.
Sally Hunt, general secretary of the University and College Union, said: “If this organisation was to have any credibility it needed a robust board looking out for students’ interests.
“Instead we have this announcement sneaked out at new year with Tory cheerleader Toby Young dressed up as the voice of teachers and no actual representation from staff or students.”
Labour MP David Lammy said on social media on Monday: “Is that Toby Young who said I was wrong to criticise Oxbridge for failing to improve access?
“The Toby Young who only got into Oxford University because his Dad rang the tutor up?
“Toby Young who slated working class students? I thought it was New Year’s Day not April Fool’s Day.”
Critics have highlighted Mr Young’s description of working class students as “stains” in a 1988 book about class.
Left-wing journalist Paul Mason accused him of “despising” working class children – but Mr Young hit back on Twitter, saying he had “helped set up four state schools that when full will educate nearly 2,000 children”.
‘Illiterate troglodyte’
At the secondary school, he went on, more than 33% of pupils “are eligible for the pupil premium and we reserve 20% of the places at the primaries for same”.
In a subsequent tweet, he said it was “disappointing how many members of the academic profession think universities should be regulated by just those who run them already”.
Comments the right-wing journalist made in a Spectator column in 2012 have also come under fire on social media, with some calling for the journalist’s appointment to be blocked by higher education minister Jo Johnson.
He wrote: “Schools have got to be ‘inclusive’ these days. That means wheelchair ramps, the complete works of Alice Walker in the school library (though no Mark Twain) and a Special Educational Needs Department that can cope with everything from Dyslexia to Munchausen Syndrome by Proxy.”
He called on the government to “repeal the Equality Act because any exam that isn’t ‘accessible’ to a functionally illiterate troglodyte with a mental age of six will be judged to be ‘elitist’ and therefore forbidden by Harman’s Law”.
He later added a clarification to the column, saying “I’m using ‘inclusive’ in the broad sense to mean a dumbed down, one-size-fits-all curriculum, rather than the narrow sense of providing equal access to mainstream education for people with disabilities”.
He had not used the word “troglodyte” as a synonym for children with special educational needs, he added.
A Department for Education spokesman said: “Toby Young’s diverse experience includes posts at Harvard and Cambridge as well as co-founding the successful West London Free School.
“This experience will be vital in encouraging new providers and ensuring more universities are working effectively with schools.”
The Office for Students board, which includes an engineering student and the managing director of high street chemist Boots, as well as other figures from industry and education, reflects “the diverse needs of the higher education sector”, the spokesman added.
A woman has started a website to help disabled people navigate hospitals and flag up the facilities they have.
Liz Owen, who has Ehlers-Danlos Syndrome that affects the skin and joints, set up the site after realising the anxiety it caused not knowing what facilities different hospitals had to help people like her.
Comedian Chris McCausland makes his debut on the “Holy Grail” of TV comedy programmes Live at the Apollo early next year , but he hadn’t planned on becoming a comedian at all. It was only after he went blind as a teenager, and then lost his job years later due to depression, that he turned to jokes.
McCausland, 40, was born with a hereditary eye disease that left him blind in his late teens.
“I was losing my sight all the way through childhood,” he says. “I could never read the letters on the blackboard or anything at school, but I could run around and play football.”
His sight loss was gradual and hard to cope with, but as the world got blurrier there was never a right time to process what had happened.
“I was very self-conscious. I hated using a [white] stick and I resisted it ’til the very last minute because it labelled me as being blind or disabled, which I was, but it was still quite new. I was very slow on the coming to terms with it.”
McCausland’s sight got so bad in his 20s that he was forced to give up his job as a website designer and became unemployed.
“I was a little bit depressed then and a mate of mine ran a pub. So I ended up going down to his pub quite a lot and maybe drinking a little bit more than I should,” he says.
“Then I got a job in a call centre for a few years just doing sales which I think sorted me out.”
While there, McCausland started to take an interest in the comedy scene and searched the web to see how he might get into it.
“I came across a thing that said you could be a comedian in two weeks and I thought ‘behave – nobody could do that’.”
But he gave it a go and “dared” himself to write five minutes of material and perform it at an open mic night to see if he really was funny.
“I didn’t set the world alight but people laughed more than once – enough to make me have another go,” he says.
McCausland quit telesales shortly afterwards to concentrate on his new-found talent, but it took a further two years before the hobby began to pay.
Initially his family were sceptical and told him to “get a proper job”, but he was determined to succeed. He honed his routine performing five nights a week on the open-mic circuit – sometimes he would have up to four or five gigs a night, a number which creates its own original challenges.
“It can play tricks on your mind because you get to a point where you ask yourself ‘have I told them this or was it the last show I did 40 minutes ago?'”
As McCausland travels the circuit so do his two sighted guides.
They accompanied him to the month-long Edinburgh Fringe Festival where they helped him get around the city.
“It’s a long old slog for them to be sitting through the same show for a month.” So he tends to switch them halfway through.
As well as getting McCausland to his shows, his guide for that day helps him on to the stage at each venue – where the comedian always has a stool to sit on or stand beside. It doubles as a helpful point of reference when he gets up and moves around.
“If I didn’t have a stool,” he says, “half of my brain would be thinking ‘which way have I turned?’.”
McCausland can’t walk into the audience like his fellow comedians, and has to memorise his script thoroughly before a show.
“Other comedians have more flexibility and more mental freedom. They can be loose with what they have written. He says they don’t need to concentrate so hard or cram it all into their heads like he does, because they can look at notes.
And though he has to approach his comedy a little differently, McCausland does not talk much about sight loss in his set.
“It’s a part of what makes me ‘me’. And I’ve mentioned it a little bit and made some jokes about it, but the idea is to get it out of the way and move on.”
Most of McCausland’s jokes centre around life in general and he guesses that only “about 15%” of his set is made up of “blind jokes”.
“You don’t want to keep on mentioning being blind because it stops being funny – if you are just talking about that, people are going to get bored of it.”
But being a comedian is not the only job McCausland has to juggle.
He has a young daughter and says it can be a challenge to be a dad when you can’t see.
Sophie has not inherited his condition retinitis pigmentosa, she has full sight and lots of energy.
“Half of the time she will run into the living room shouting ‘look at me’, and I have to encourage her not knowing whether she is holding scissors in her hand or got a carrier bag on her head.”
Implying that he must be doing OK, he quips that she is four now and he has managed to keep her alive this far.
Communicating visually is important to young children who have not yet got the words to express themselves but the two have developed a system now she is beginning to understand that her dad cannot see.
“If she wants to show me the bows on her dress she will put my hand on the bows and she says ‘look at these bows Daddy’ – it’s cute.
“As she gets older we will be able to go out together, because I’ll hold her hand and she won’t be as reliant on my ability to not walk her into a lamppost.”
McCausland will be appearing on the new series of Live at the Apollo early in 2018.
He describes the moment he was offered the gig during a meeting at the BBC as the “highlight of his career”.
“I did a little dance and went and had a beer with my agent,” he reveals.
Though the name of the programme might suggest otherwise, the series was recorded earlier this year – and so McCausland has already performed the set in front of a 3,500-strong audience at the famous venue.
He had one chance to get it right which he describes as nerve-racking.
“You don’t really want your first time standing in front of that many people to be filmed for everyone to see, because you just look like a rabbit in the headlights. But the whole experience was amazing, it couldn’t have gone better,” he says.
“It’s the Holy Grail of opportunity – hopefully when they edit it and put it on the television it will look alright.”
You can watch Chris McCausland on BBC Two’s Live at the Apollo on 4 January 2018 at 22:00.
“We need a root & branch reform of PIP. One of the people who came to ‘Feeding Birkenhead’ foodbank was doubly incontinent because of cancer.
She got a Nil rating for PIP.
Whilst she needed food, she also needed nappies.
When she didn’t turn up after a few days, people went to see how she was. She was washing(and reusing) those babies nappies that we had, because she wanted to get about and she was too ashamed to come and ask us for more.
Isn’t there something wrong with the PIP assessments when these sort of cases occur?” Frank Field, Labour MP
A team from Manchester has found distinctive molecules that seem to be concentrated on the skin of Parkinson’s patients.
One in 500 people in the UK has Parkinson’s – that is 127,000 across Britain.
Musky smell
It can leave them struggling to walk, speak and sleep.
Currently there is no definitive test for the disease, with clinicians diagnosing patients by observing symptoms.
This is how the disease has been diagnosed since 1817, when James Parkinson first established it as a recognised medical condition.
However, that could change because of Joy Milne from Perth, whose husband Les was told he had Parkinson’s at the age of 45.
About a decade before her consultant anaesthetist husband was diagnosed, Joy noticed she could detect an unusual musky smell.
Joy said: “We had a very tumultuous period, when he was about 34 or 35, where I kept saying to him, ‘you’ve not showered. You’ve not brushed your teeth properly’.
“It was a new smell – I didn’t know what it was. I kept on saying to him, and he became quite upset about it. So I just had to be quiet.”
The retired nurse only linked the odour to the disease after meeting people with the same distinctive smell at a Parkinson’s UK support group.
She told scientists at a conference, and subsequent tests carried out by Edinburgh University’s Dr Tilo Kunath confirmed her ability.
Joy was given 12 unmarked T-shirts to smell – six worn by Parkinson’s patients and six worn by volunteers without the disease.
She correctly identified the six worn by Parkinson’s patients, but could also smell the odour on a T-shirt worn by someone in the control group without Parkinson’s.
Joy was told three months later that this person had in fact been diagnosed with Parkinson’s after the T-shirt tests.
No cure
Dr Kunath said: “She was telling us that this individual had Parkinson’s before he knew, before anybody knew.
“So then I really started to believe her, that she could really detect Parkinson’s simply by odour that was transferred on to a shirt that the person with Parkinson’s was wearing.”
Joy’s husband died in 2015, aged 65.
There is no cure for the disease and Joy’s last promise to him was that she would investigate her special ability and how it might help others.
Dr Kunath has enlisted the help of Prof Perdita Barran, an expert in chemical analysis from Manchester University, to try to isolate the actual molecules that form the odour that Joy is able to smell.
Prof Barran’s team collected samples from patients with Parkinson’s and a control group of those without, to see if there were molecular signatures that only people with the disease have.
The samples were put through a mass spectrometer, a device that isolates and weighs individual molecules.
The first set of results indicated there were 10 molecules distinctive to Parkinson’s sufferers.
Prof Barran said: “It is very humbling as a mere measurement scientist to have this ability to help find some signature molecules to diagnose Parkinson’s. It wouldn’t have happened without Joy.
“For all the serendipity, it was Joy and Les who were absolutely convinced that what she could smell would be something that could be used in a clinical context and so now we are beginning to do that.”
You can see more on this story in The Woman Who Can Smell Parkinson’s at 19:30 on Monday 18 December, on BBC One Scotland, and afterwards on the BBC iPlayer.
Ian, 35, who has since been given chemotherapy, is now doing well.
The hospital involved has said his learning disabilities had not been a factor in the decision to put him on end-of-life care.
Ian has learning disabilities, autism and epilepsy.
In December 2016, he was diagnosed with testicular cancer.
His parents say they were told by doctors nothing more could be done for him as the cancer had spread too far.
In February, he arrived home for what his family believed would be his final few months.
Ian, whose behaviour could at times be challenging, spent nearly a decade in secure units, moving between three different places.
His family believe in the units he was over-medicated and his health neglected.
They had to fight to get him moved to a supported home in the community, it was a few months after the move that the cancer was detected.
His parents believe it could have been found the year before when he was treated for a testicular swelling, if there had been a thorough investigation.
In July of this year, the BBC reported on Ian’s case after it led to a call for the prime minister to appoint a commissioner to champion the rights of people with learning disabilities.
Sir Stephen Bubb, who had written two reports for NHS England on secure units, described Ian’s case as “all too typical” of the continuing failures vulnerable people faced.
Easily treated cancer
Dr Justin Wilson was watching the report on the BBC News at Six and Ten.
He is a psychiatrist who has also studied treatment of cancer in people with learning disabilities. He asked to be put in touch with the family.
He says: “Knowing that testicular cancer is one of the most treatable cancers that there is, I was surprised that the decision had been made not to provide treatment and I wanted to understand what that was about.”
As a result, a second opinion was sought about Ian’s treatment.
“My concern was that perhaps judgements were made about the quality of life that he has because of his severe learning disabilities and because of the physical impact of how the cancer has spread,” says Dr Wilson.
“I’m also clearly aware that providing cancer treatment for someone with the problems that Ian has is a real challenge.
“It is really difficult to give the best possible treatment to somebody in that situation, but my view is those challenges can be overcome.”
Ian is now undergoing chemotherapy at the Royal Marsden Hospital – and he is doing well.
A scan at the end of November showed after four rounds of chemotherapy the tumour, which had spread to his stomach, had shrunk.
Ian’s mother, Jan, says: “Especially when I thought there was no treatment and no cure, it was just a waiting game, but now there is hope.”
Ian was a patient at Luton and Dunstable Hospital when his family were told last February that he was terminally ill and could not be treated.
In a statement, the University Hospital Trust said a course of chemotherapy had been planned but Ian’s condition had then worsened.
A range of experts had been consulted and it had been decided he had been too ill to undergo treatment.
It added: “The decision was therefore taken, in consultation with his family, to start palliative care.
“The trust can confirm that Mr Shaw’s learning difficulties were not a factor in the decision to move to a palliative care pathway.”
NHS England says it is working to reduce the health inequalities faced by people with learning disabilities. But neither it nor the Department of Health wanted to comment on Ian’s case.
NHS policy is that reasonable adjustments should be made to ensure that people with learning disabilities get the medical help they need.
In Ian’s case, he is put under an anaesthetic for a short time while he is given the chemotherapy.
The tumour has affected Ian’s spine so he is unable to walk, but after 10 months in bed, in November he was moved into a wheelchair.
In a joint statement, the charities Mencap and Challenging Behaviour Foundation said: “We know 1,200 people with a learning disability die every year when their lives could have been saved had they had access to good quality healthcare at the right time.
“Failures to train healthcare professionals on how to support patients with a learning disability and the refusal to involve families in key decisions about their loved one’s health continue to contribute to this scandal of unequal health treatment.”
In response to pressure from the Work and Pensions Select Committee the Department for Work and Pensions has announced that its target for upholding original PIP and ESA decisions at the first stage of appeal, known as Mandatory Reconsideration (MR), will be dropped.
On 28 November the Committee wrote to DWP with concerns about MRs, which had come up in the Committee’s current inquiry into the medical assessments carried out by ATOS, Maximus and Capita to inform DWP’s decisions on awards of disability benefits PIP and ESA.
Pressure to turn out numbers
The Committee had heard of “pressure to turn out numbers” in relation to both the original decision and at MR stage, and that MRs simply “rubber stamp” the original decision. The DWP revealed in an FOI request in May 2017 that one of the performance indicators for MRCs was that 80% of the original decisions are to be upheld. The Committee queried how a target for upholding original decisions could be compatible with ensuring that questionable reports are thoroughly investigated, and erroneous decisions identified and corrected. MR should be an important extra safeguard, but instead appears to be creating another “hurdle” in a process that is already arduous and stressful for many claimants, as the Committee has heard directly in nearly 4,000 individual accounts submitted to it.
The Department’s response “categorically state(s) that there has never been a Mandatory Reconsideration target for upholding original decisions”, and that the 80% target, “an internal measurement only used to indicate areas” where there were problems with the original decisions being made, will be dropped.
Victory for PIP and ESA claimants
Commenting on the response, Rt Hon Frank Field MP Chair of the Committee, said
“It is great news that the target has been dropped and we congratulate the Department on this response. This is a great victory for the thousands of PIP and ESA claimants who have responded to our inquiry, and for anyone going through this process, who can now go to the first stage of appealing a benefits decision with more confidence that the reconsideration will be fair and impartial.”
Do you shake hands? I do – with people I’m meeting for the first time, and often meeting up with people I already know really well. But the classic handshake is now not the single accepted greeting, and even with strangers you must awkwardly negotiate the possibility of the kiss on one or both cheeks, or bro shake with optional shoulder bump.
But I’ve been trained to think of the unhesitating handshake as simple good manners. The same, I suspect, is true of former pub landlady Bethen Thorpe from north London, who was diagnosed with multiple sclerosis in October 2014. She had to apply for disability benefit, filled in a 35-page application form, and then travelled to Chelmsford, Essex, for an assessment meeting. She was turned down because she shook the DWP assessor’s hand, which was taken as evidence of her fitness for work.
The handshake, that historic gesture of good faith, was turned against her. Since then, Thorpe has had the handshake-dismissal overturned on appeal. But what lessons are to be drawn? Only this. If you’re disabled and meeting your DWP assessor for the first time – or any time – just offer up your cheek for a delicate, feather-light kiss.
The BBC’s pioneering new training programme for disabled actors has led to all 32 participants successfully securing BBC auditions.
The development programme, called ‘Class Act: a nationwide search and skill factory’, comes as part of the BBC’s ambition to support and raise the profile of disabled actors.
During an intensive three-day workshop the participants, who include experienced actors as well as up and coming talent, were tutored in audition and camera technique, acting and business skills, script and character work, as well as working with directors on their showreels.
The disabled actors also got the opportunity to build their contacts and showcase their talents to professionals across the industry, leading to them all being offered auditions by Julia Crampsie, Casting Executive at BBC Studios.
The BBC has set challenging new diversity targets for disabled people to ensure our content reflects the public we serve, and this training is part of the BBC’s commitment to improve disabled representation on screen to 8% by 2020.
On-screen portrayal of disability is increasing with more disabled performers represented across the BBC’s output and platforms. Recent examples include BBC Three’s ‘A Brief History of Tim’, BBC One drama ‘Silent Witness’ and sitcom ‘Ability’ on BBC Radio 4.
Below is a transcript of interviews with actors who attended BBC Class Act and guest speaker Ruth Madeley, star of the BBC’s Bafta award-winning ‘Don’t Take My Baby’.
Ruth Madeley, a guest speaker at BBC Class Act who has spina bifida, said:
“I think worrying about it being a tick-box exercise is something that every disabled actor does fear. Having that fear that I’ve only been picked for a role because I’m in a wheelchair or I have a disability. Another big challenge is you think you’ll be typecast as only being able to play the disabled roles. These people here have all proven that’s not the case, they’re able to play anything and everything – they are actors and that’s what they do. I think that’s a massive challenge that’s hopefully been knocked on the head a bit with things like this. The fact that this three-day workshop has been put on is an incredible opportunity for people to be in front of directors and casting people that they never would be able to sit and have a conversation with, and ask questions to, without a situation like this – this is key for them. This isn’t an easy industry to be in, but when you feel the progress and you get where you’re going there’s nothing better. The best thing about it is being able to change people’s perceptions for me and make that change, make people challenge everything they ever thought about disability, and I’m excited to keep doing that.”
Jessi Parrott, a BBC Class Act participant who has cerebral palsy, said:
“I realised at an early age that acting made people look at me because they weren’t looking at my chair, they were looking at the character that I was playing, so that’s how I first got into it. Then I realised that actually my chair could give a different and interesting spin on the character, so acting helped me realise that my chair wasn’t something to hide away from. A really inspiring element of this course is that for once our disability isn’t the first thing people notice about us and we can just be here on the basis of our acting ability and our skill, so that’s been a real novel feeling. The arts are meant to reflect society as it is and so we need people like us to be on stage and on screen. Because the arts have been so impactful for me in understanding that I’m a valuable human being, I want to hopefully give that back to other people like me. When you have a disability people can feel even more isolated. So to know that there is that sense of community and to be in a room where everyone just accepts you as you are, rather than making your difference the most important thing about you, has just been really refreshing and validating.”
Mark Beer, a BBC Class Act participant who has second degree cerebral palsy, said:
“Everybody is in the same boat – everybody has some sort of physical or sensory disability and they desperately want to get their stories heard, their abilities seen and to be out there within the media. To see so many people with obvious disabilities that are very visible, and some invisible, with loads and loads of talent is terribly exciting. And what’s inspiring is that all of us have come on this journey together and there is strength in numbers and strength in finding a voice. And we’ve all done that now. It’s been a wonderful experience and I’ve learnt a lot. The casting directors, the directors, the producers have these tapes and the knowledge that there are talented disabled actors and actresses out there, so it’s time for them to use them now.”
Bill Blackwood, a BBC Class Act participant who has multiple sclerosis, said:
“I wanted to come on Class Act because it’s one of those opportunities that come along once in a lifetime and one of those things you’ve got to grasp with both hands. The workshop itself, I’ve had Q&A sessions which have been fantastic with some wonderful people. There’s also that practical base to it where we’ve been working on pieces individually, some have had monologues and some have had duologues, to develop those from a script on a piece of paper to something that is potentially broadcastable.”
Kevin O’Neill is believed to be one of only 15 people in the world to have been diagnosed with the rare form of cancer called malignant myopericytoma – and now he is trying to track down the others.
The 48-year-old, from Inverkeithing in Fife, has been living with severe chronic pain for 11 years and has had five major operations in the past five years to remove tumours.
Two years ago he noticed the scar from a previous operation getting hot and then a swelling started on the wall of his chest on the right hand side.
Within weeks the swelling grew out of his shoulder blade to the size and weight of bowling ball.
Kevin told BBC Scotland’s Kaye Adams programme: “Myself and my wife have a good laugh about it now, the size that it was, but it was agony carrying it.”
He says his previous tumours had been benign, but this one was cancer.
“If I had refused the surgery it would have killed me,” Kevin says.
He underwent an operation to remove the massive tumour at the Royal Infirmary in Edinburgh, a 12-hour process which required him to be put into an induced coma for two-and-a-half days.
The surgery took place in October 2015 and required the removal of his ribs on the right side and part of his shoulder.
Surgeons said the tumour they removed was a size they had never seen before or since.
It was the weight of a newborn baby and the circumference of a dinner plate.
Samples from the tumour had been analysed in Edinburgh, then sent to the specialist Beatson West of Scotland Cancer Centre and research centres in the England.
The samples were finally sent to the United States before a diagnosis was reached of malignant myopericytoma.
A month after the surgery he got a call from his oncologist at Edinburgh’s Western General.
Kevin says the oncologist told him there were just 15 people worldwide who had been diagnosed with this kind of cancer.
Recovery period
Two years after the operation, Kevin says his recovery is still ongoing.
“Because during the operation itself they took out the majority of my right ribs and quite a lot off my right shoulder, my chest was rebuilt as well,” he said.
“As you can imagine it’s quite a long recovery period.”
Kevin retired from his job as a union organiser on medical grounds and has been to cancer support groups, but says he always felt like “the guy in the corner with the cancer nobody could pronounce”.
The DWP have attempted to mislead the work and pensions select committee over the accuracy of PIP and ESA decisions.
In a document entitled ‘Work and Pensions Select Committee PIP and ESA Assessments inquiry: Supporting Statistics’ the DWP argue that only “A small proportion of decisions are overturned at MR [mandatory reconsiderations] or appeal”.
The document presents figures showing that only 4% of PIP decisions and 3% of ESA decisions are overturned at mandatory reconsideration.
What the document fails to explain is that many claimants are prevented from requesting a mandatory reconsideration in the first place, because call centre staff repeatedly mislead claimants by telling them:
You are not allowed to request a mandatory reconsideration by phone, you must do so in writing;
You must have new medical evidence before you can ask for a mandatory reconsideration.
Neither of these statements is true, but they are undoubtedly effective in discouraging many claimants from challenging a decision.
The DWP go on to claim that only a small proportion of PIP decisions upheld at mandatory reconsideration have been overturned at first tier Tribunal. They present this as being between 2% and 4%, depending on the health condition.
But this entirely ignores the fact that many claimants will simply be physically, mentally or emotionally unable to lodge an appeal after already being forced to take part in the mandatory reconsideration process, which is deliberately designed to discourage claimants from taking matters further
But the one figure that the DWP shamefully exclude from their briefing document is the overturn rate at first tier tribunals.
A briefing document prepared by the DWP for work and pensions select committee reveals the scandalously small amount of money the DWP spends on carrying out mandatory reconsiderations and preparing appeals. It also explains why the DWP are happy to get personal independence payment (PIP) and employment and support allowance (ESA) decisions wrong so often.
Cut-price submissions People often argue that it must be costing the DWP huge amounts of money to process so many mandatory reconsiderations and appeals and that it would be cheaper to just pay the benefits to claimants.
In fact, it turns out the DWP can knock out a reconsideration decision for under £40 and an appeal can be done for under £100, the cheapest being in connection with claimants being forced off DLA and reassessed for PIP.
Figures published in a document entitled ‘Work and Pensions Select Committee PIP and ESA Assessments inquiry: Supporting Statistics’ show the average costs as follows:
PIP Reconsiderations including training £55.07
PIP Reassessment Reconsiderations £37.89
PIP Appeals including training £211.39
PIP Reassessment Appeals £93.90
ESA Reconsiderations £53.69
ESA Appeals £82.98
The very low cost of reconsiderations and appeals demonstrates just how little work the DWP put into the process.
In particular, £37.89 for reconsideration of a decision where a claimant has been pushed off DLA and refused PIP is tiny. It must purchase a very small amount of staff time, when all the ancillary costs are taken into account.
Huge attraction But for the DWP the attraction of wrongly depriving claimants of benefits is huge.
A single claimant who is entitled to enhanced mobility but wrongly gets nothing will save the DWP in two years around one hundred times the cost of the mandatory reconsideration.
Given that the vast majority of claimants who lose at mandatory reconsideration do not go on to appeal, making the wrong decision is a gamble with the odds stacked very firmly in the DWP’s favour.
A small proportion of claimants will go on to appeal, but even then the whole process can cost the DWP as little as £130 if it is a PIP reassessment decision and under £140 if it is an ESA decision.
Even the most expensive reconsideration and appeal will cost less than £270.
For many PIP appeals there is now the cost of a presenting officer, but as this came from a separate grant of £22 million it is not an additional DWP expense.
So, for the DWP, there is very little to lose in taking even the most obviously unwinnable cases to tribunal.
But there is a great deal to gain, given the number of claimants who will be physically or emotionally unable to pursue their case all the way to a tribunal. The vast majority of claimants give up as soon as they realise that their mandatory reconsideration has been unsuccessful and the DWP is forcing them to go to an appeal. Others will drop out during the appeal process itself.
A small number will make it all the way to the appeal itself, but for the DWP the fact that they are then left defending a clearly unjust decision is a price well worth paying.
Cannot hope to win Which explains why Sir Ernest Ryder, senior president of tribunals, told a gathering of barristers last month that most of the decisions that the DWP tries to defend at tribunals are so bad that they have no case at all and cannot hope to win.
He said that the tribunals service was considering charging the DWP for bringing unwinnable cases, though in reality there is no realistic prospect of this happening.
The truth is though, that while appeals are cheap for the DWP, the cost to the state is considerable.
There is the cost of the panel members, the venue, travelling expenses, photocopying, postage and more.
But the DWP doesn’t have to pay for these additional costs to the taxpayer.
Nor does it care that the unfair removal of benefits and the emotional strain of an appeal causes the condition of some claimants to greatly deteriorate.
For the DWP it’s only their budget that matters.
And getting decisions wrong is very cost effective indeed.
The defect that causes the neurodegenerative disease Huntington’s has been corrected in patients for the first time, the BBC has learned.
An experimental drug, injected into spinal fluid, safely lowered levels of toxic proteins in the brain.
The research team, at University College London, say there is now hope the deadly disease can be stopped.
Experts say it could be the biggest breakthrough in neurodegenerative diseases for 50 years.
Huntington’s is one of the most devastating diseases.
Some patients described it as Parkinson’s, Alzheimer’s and motor neurone disease rolled into one.
Peter Allen, 51, is in the early stages of Huntington’s and took part in the trial: “You end up in almost a vegetative state, it’s a horrible end.”
Huntington’s blights families. Peter has seen his mum Stephanie, uncle Keith and grandmother Olive die from it.
Tests show his sister Sandy and brother Frank will develop the disease.
The three siblings have eight children – all young adults, each of whom has a 50-50 chance of developing the disease.
Worse-and-worse
The unstoppable death of brain cells in Huntington’s leaves patients in permanent decline, affecting their movement, behaviour, memory and ability to think clearly.
Peter, from Essex, told me: “It’s so difficult to have that degenerative thing in you.
“You know the last day was better than the next one’s going to be.”
Huntington’s generally affects people in their prime – in their 30s and 40s
Patients die around 10 to 20 years after symptoms start
About 8,500 people in the UK have Huntington’s and a further 25,000 will develop it when they are older
Huntington’s is caused by an error in a section of DNA called the huntingtin gene.
Normally this contains the instructions for making a protein, called huntingtin, which is vital for brain development.
But a genetic error corrupts the protein and turns it into a killer of brain cells.
The treatment is designed to silence the gene.
On the trial, 46 patients had the drug injected into the fluid that bathes the brain and spinal cord.
Doctors did not know what would happen. One fear was the injections could have caused fatal meningitis.
But the first in-human trial showed the drug was safe, well tolerated by patients and crucially reduced the levels of huntingtin in the brain.
Prof Sarah Tabrizi, the lead researcher and director of the Huntington’s Disease Centre at UCL, told the BBC: “I’ve been seeing patients in clinic for nearly 20 years, I’ve seen many of my patients over that time die.
“For the first time we have the potential, we have the hope, of a therapy that one day may slow or prevent Huntington’s disease.
“This is of groundbreaking importance for patients and families.”
Doctors are not calling this a cure. They still need vital long-term data to show whether lowering levels of huntingtin will change the course of the disease.
The animal research suggests it would. Some motor function even recovered in those experiments.
Peter, Sandy and Frank – as well as their partners Annie, Dermot and Hayley – have always promised their children they will not need to worry about Huntington’s as there will be a treatment in time for them.
Peter told the BBC: “I’m the luckiest person in the world to be sitting here on the verge of having that.
“Hopefully that will be made available to everybody, to my brothers and sisters and fundamentally my children.”
He, along with the other trial participants, can continue taking the drug as part of the next wave of trials.
They will set out to show whether the disease can be slowed, and ultimately prevented, by treating Huntington’s disease carriers before they develop any symptoms.
Prof John Hardy, who was awarded the Breakthrough Prize for his work on Alzheimer’s, told the BBC: “I really think this is, potentially, the biggest breakthrough in neurodegenerative disease in the past 50 years.
“That sounds like hyperbole – in a year I might be embarrassed by saying that – but that’s how I feel at the moment.”
The UCL scientist, who was not involved in the research, says the same approach might be possible in other neurodegenerative diseases that feature the build-up of toxic proteins in the brain.
The protein synuclein is implicated in Parkinson’s while amyloid and tau seem to have a role in dementias.
Off the back of this research, trials are planned using gene-silencing to lower the levels of tau.
Prof Giovanna Mallucci, who discovered the first chemical to prevent the death of brain tissue in any neurodegenerative disease, said the trial was a “tremendous step forward” for patients and there was now “real room for optimism”.
But Prof Mallucci, who is the associate director of UK Dementia Research Institute at the University of Cambridge, cautioned it was still a big leap to expect gene-silencing to work in other neurodegenerative diseases.
She told the BBC: “The case for these is not as clear-cut as for Huntington’s disease, they are more complex and less well understood.
“But the principle that a gene, any gene affecting disease progression and susceptibility, can be safely modified in this way in humans is very exciting and builds momentum and confidence in pursuing these avenues for potential treatments.”
The full details of the trial will be presented to scientists and published next year.
The therapy was developed by Ionis Pharmaceuticals, which said the drug had “substantially exceeded” expectations, and the licence has now been sold to Roche.
One area which is particularly taboo in the socially conservative country is sex, and more so the sexual needs of disabled women.
Here, 41-year-old Mitra Farazandeh, who lives with disabilities in a small village in northern Iran, describes her own experience – and frustrations.
I am a woman. I am a woman with 75% physical disability. Yes, I have experienced love. I always say that a person who hasn’t experienced or felt love is like a scarecrow on a farm – lifeless.
I was 11 when I realised I had a special feeling about our neighbour’s son. This feeling didn’t make sense to me.
In those days, I didn’t consider myself human. Because of my disability and deformity, I didn’t believe I deserved to live. I was waiting for the unwanted moment of death.
For 14 years, I buried this love within me. I kept it to myself. After 14 years, I decided to bow down to this love and confess to him and my family. He welcomed my love but my family didn’t approve.
This made my life hell for a few years. But my love for him taught me how to also love myself – it moved something within me.
I have loved that man for 30 years, although we have never been together.
The truth is that, regardless of my disability, I am a woman with all the needs and feelings that a woman has.
I want to have my lover hold me in his arms at night and stroke my hair. Unfortunately, many people in our culture believe that women like me don’t deserve to love or be loved. This causes me pain.
The fact that my father doesn’t allow me to be with someone I love pains me. Many other disabled women like me suffer because our sexual and emotional needs are suppressed.
I believe the most important change needs to come from within ourselves. We are the ones who need to accept our sexual abilities and limitations.
We need to believe we deserve to live life to the fullest and enjoy it regardless of our disabilities. Once we believe in it, people around us will also start to respect our needs.
I know many disabled women around me whose families are unaware that these women are sexual beings because these women have failed to believe it themselves. If you don’t believe you deserve to be loved, how can your family believe it?
Although my father still insists on suppressing my feelings, I am proud of having expressed my emotions and needs. My belief in the right to live a fulfilling life has allowed me to overcome many obstacles and gain freedom.
There are still many people who believe that the sexual and emotional needs of disabled women are not a priority. But the truth is far different.
All people – men and women, able or disabled – have a spectrum of emotional and sexual needs.
I personally believe that sometimes the sexual energy of disabled people can be stronger than those who don’t have disability, maybe because it is impossible for those of us who have severe physical disability to release our energy the usual way.
That surplus energy can manifest itself as a sexual force.
I think if a disabled woman’s sexual needs are not met, it can be very damaging.
Our physical disability can feel like a cocoon holding us inside. To release our physical and sexual energy would give us more space in this tiny cocoon.
Conservative MP Wendy Morton says Universal Credit ‘helps’ people into work and criticises opposition MPs for ‘scaremongering.’ However, the new benefit has pushed people into debt and rent arrears, with some forced to rely on food banks to survive. It’s difficult to see precisely how a social security benefit that creates those circumstances could possibly help people into work.
The introduction of Universal Credit was aimed at ‘incentivising’ people into work and to work longer hours, by ensuring that for those needing to claim welfare support, the experience was as uncomfortable as possible. Under the Conservatives, social security has been transformed into a system that metes out discipline, coercing citizens into compliance with state-defined economic outcomes, rather than serving as a national insurance-funded provision to meet people’s basic necessities, should they need it – which was the original intention behind the welfare state.
The introduction of ordealsand harsh conditionality in…
One of the big concerns the Committee has heard about DWP’s contracted PIP and ESA assessors is how their staff are qualified to assess the impact of multiple, serious and complex physical and mental health conditions on people’s lives, and how those conditions can affect the assessment process itself. Mencap’s evidence to this inquiry includes instances like a claimant being asked what medication he was on for Down’s Syndrome and learning disability – displaying deep ignorance of the condition, its effects and how it is dealt with.
In the video above from our in evidence this week, Committee Member Alex Burghart asks what specialist measures these companies have in place when they are working with someone with a serious mental health condition like schizophrenia: the answer was, effectively, none. All three companies insisted that no specialist medical knowledge is required to perform the “functional” assessments they carry out.
On Monday at 15:45 in Wilson Room we’re asking the specialist disability advocacy groups asking Scope, Sense, the Disability Benefits Consortium, Citizen’s Advice and Mencap if they agree. You can also watch online. /ENDS
This love story starts with a girl who collapsed on a Brighton street and a boy who took a bus using a borrowed £1 which would later save his life.
Simon and Becki lived in different corners of the country. They both had a stroke when they were young. They overcame disappointments and both had to learn to live with newly-acquired disabilities. Years later, they would meet by chance and fall in love.
Becki Cobb was 21 in 2011 and about to start her final term at university. She had just returned from a visit to Paris to see a friend and decided to walk to her part-time job at a clothes shop in Brighton.
“It was a beautiful sunny morning, but after 20 minutes I started to feel really light-headed. I had an apple in my bag, but as I tried to bite into it I dropped it and then fell onto my knees and I just couldn’t get back up.
“I felt like I’d fainted but I was conscious.”
She was found by two policemen who were concerned how unwell she looked, but Becki kept telling them she had to get to work. They said they would take her, but only if she was able to get into the car by herself.
“I couldn’t open the door. My left-hand side was getting paralysed so it was getting very weak and all my muscles were stopping. I remembered lying on one of their laps because they were saying ‘you need to keep talking to us’ but I was just so tired.
“The policemen told me I was saying things that didn’t make sense but in my head I was talking perfectly coherently.”
An ambulance was called and Becki was in hospital within 20 minutes, but her memory remains blank until 22:00 that night. She has relied on other people to fill in the gaps.
The hospital contacted her parents in Lincolnshire and told them to get there quickly because it was not known if Becki would survive.
The medical staff were mystified. Although Becki was showing symptoms of stroke, they held back from that diagnosis because, at 21, she would have been unusually young to have one.
To rule it out, they called-in a consultant on her day off. When she examined Becki, the consultant confirmed the medical team’s original thinking. It was a stroke.
Simon Commins was 17 and studying for his A levels in Chester in 2004 with plans to be an engineer. He skipped class early that afternoon to get to his job as a swimming pool lifeguard.
He decided he’d go to the gym before his shift and borrowed £1 from a friend to pay for a bus ticket. He says that, at the time, he wasn’t aware the pound would save his life – had he been penniless and forced to walk, he may not have been near anyone who could help him when he needed it.
Just before he reached his stop, Simon began to feel light-headed.
“It was as if there was a loss of conscious control. The second I stood up my legs felt really heavy, every step felt like I was getting heavier and my vision was getting quite bad.”
He got off the bus and made his way to a wall outside an Army careers building. He sat down and tried to call his Dad but his vision was so bad he couldn’t see the keypad and kept dialling the wrong numbers.
“I started to panic. I put my bag down on the floor and laid down and tried to go to sleep because I couldn’t figure out any other way to get out of the situation.”
Inside the recruitment building, two men were watching Simon on CCTV and went out to ask if he was ok.
“I couldn’t respond because the stroke was affecting my speech. I managed to write the word “ill” on a piece of paper and they called an ambulance.”
At 21 and 17 Becki and Simon were unusually young to have a stroke.
It was determined that Becki’s was caused by a blood clot which passed through a hole in the heart between the two upper chambers which had failed to close as normal when she was growing up. The resultant hole is known as a patent foramen ovale (PFO).
Little did Simon know, but the daily nosebleeds he’d been having were a sign that he had a genetic disorder called Hereditary Haemorrhagic Telangiectasia (HHT). This stops some blood vessels from developing properly and they build up with blood, known as arteriovenous malformations (AVMs). These AVMs were in Simon’s brain where they ruptured, causing a haemorrhage and stroke.
According to brain injury charity Headway, about 130,000 people are admitted to hospital each year in the UK with stroke – about 300 of those are aged under 25.
Warning signs include face drooping, difficulty in lifting the arms and slurred speech. It can also include a sudden, intense headache, dizziness, vision problems and confusion.
Becki: ‘I was paralysed’
Becki spent 48 hours in intensive care, five weeks in hospital and four weeks in rehabilitation. She still has physio every two weeks which keeps her “ticking along”.
“I had to learn how to walk again. I was paralysed down the left side so I had facial drop. I suffer fatigue still and, at the beginning, my friends would come and visit me and I’d just fall asleep.”
Becki still can’t use her left hand and struggles to walk – sometimes a few steps around her London flat is all she can manage – “I do still make a few improvements, but it is a lot slower.”
At the time, the stroke was a surprise, but when she looks back, Becki thinks the signs may already have been there.
She had begun to experience dizziness when she leaned her head back. And on the day she returned from her trip to Paris, she went to the pub with friends where she believes another symptom may have shown itself.
“I had half a cider and got really drunk, really, really drunk. I was thinking I shouldn’t be drunk like this, but you can’t go to the doctors and say ‘I’ve had a cider and I feel drunk’.”
Less than 24 hours later she was in hospital.
Simon: ‘I didn’t really know who I was’
Simon spent four weeks in hospital. He had lost 25% of his eyesight and his cognitive behaviour was impaired. He has aphasia – difficulties with language – and finds it hard to plan and remember tasks.
“My personality changed when it happened. I didn’t really know who I was anymore in terms of my identity. I felt like I didn’t have one and I needed to build that up again.”
Simon says that, after the stroke, he became more aggressive because he was frustrated by the situation and, to add to this, the aphasia had taken away his ability to voice an opinion.
“At the beginning, even if I thought of something, words got lost at the point of speaking. Physically, I could do everything that I could before, but cognitively I was way behind. This was the time when I felt the most alone.”
The extent of the situation didn’t fully hit home until the night he returned from hospital and found he wasn’t able to read his five-year-old brother’s storybooks. He realised this was the very low level at which his reading would have to start again.
Simon spent months working hard at his reading, writing and talking and says his brain has now re-wired itself to communicate using language.
“My brain continues to improve,” he says. “However, instead of saying exactly the right words, it skirts around the topic as close as possible.”
Doctors have been keeping an eye out for further AVMs, the malformations which caused that initial hemorrhage. He has since had surgery to remove others – two craniotomies and a radiation beam – but it’s a continual worry that more will develop.
As well as having to come to terms with their new bodies and work on their recovery, they were also at that crucial point in their lives when they needed to shape their futures. At this stage, however, they still did not know each other.
While friends and peers went out to work and socialise, Becki and Simon were left to contemplate what they should now do.
“People were starting to move on with their lives and I wanted to be like them and have choice. I felt like a disabled person who didn’t have many options other than trying to overcome something I’d never planned for,” Simon says.
He reapplied for his lifeguarding licence and returned to sixth form 10 months after the stroke. He ditched maths and physics and chose instead to study business, geography and IT at A-level. Despite nearly giving up and failing the first round of exams, he secured good grades.
Simon went on to study construction at college and then at university. He was provided with an assistant to take notes for him in lectures and recorded everything so he could listen to each lecture several times. It worked. He graduated and started work as a quantity surveyor.
Becki returned to Brighton University eight months after her stroke to complete her media course part-time, but lived a very different student life to the one she had experienced before.
“You expect that when you come out of hospital you’re better, but I was using a wheelchair and a walking stick when I was 21 and it’s quite a big deal. I couldn’t leave the house without help. You definitely feel disabled.”
Becki’s occupational therapist said she would only be able to return to university if she used a power-assisted wheelchair. Unhappy with the prognosis, Becki defied those expectations and returned to university with a manual wheelchair. She moved in with four friends who she described as “amazing”.
“They used to take me to physio and make sure that, if they were going to the pub, they’d get me there as well.”
But some of her friendships, the ones based more on parties and socialising, drifted away and her priorities changed. She focused more on her work and recovery and graduated with a first class degree.
“It was hard,” she says. “But it just meant planning and having that network of people who were willing to say ‘you’re going to do this and we’re will help you’, I don’t think I could have done it without that.”
She saw this as a success, but some things had to fall by the wayside. Becki had volunteered at a radio station with ambitions to become a producer, but after her stroke she said she was “terrible” at it.
“I found it much harder to concentrate – I would copy the wrong CDs, play the wrong clips and make mistakes on my audio editing. It was too much for my brain to handle.”
Becki and the station management came to a mutual decision that it wasn’t working as well as it once had, and they parted company.
“It was really hard because it was something that I loved but you have to let things go if they’re not right and find something you are good at or can do better than before.”
While Becki had now ruled out becoming a radio producer, she stuck with media and found a job working on BBC drama productions.
Becki and Simon had been through a lot. They were in their 20s and were still in the recovery stage. They were also just about to meet each other completely by chance.
Nearly two years had passed since Becki had been hospitalised when a friend’s dad arranged a raffle at his workplace to raise money for a stroke charity and invited Becki to collect the cheque. It was the same company at which Simon worked.
Simon hadn’t taken any notice of the raffle when it happened, but was having a break when Becki needed a rest.
“I got shown around the building and at the end of it I needed to sit down,” Becki says. “They took me into this little room and Simon was sat there and we started talking and he just said ‘I’ve had a stroke too’.
“I’d met people my age who’d had strokes but it was all through support groups – to meet someone coincidentally and get on so well, it was just crazy.”
After Simon’s unexpected revelation she clumsily responded, “you don’t look like you’ve had a stroke”, the one cliche phrase she hated when people said it to her. Simon saw past the comment and quickly forgave her.
She says: “It started with something in common, then it just grew and became very flirty. It was very mutual.”
Becki told Simon it had been almost two years since she had her stroke and he surprised her by suggesting they should go out to celebrate it.
He took Becki and two female friends out for dinner in London. “The two girls said it was like being on a date with us,” Becki says. “It was just from there that we clicked.”
“If he hadn’t taken me out for dinner to celebrate we might not be where we are today.”
They continue to mark their stroke anniversaries with dinner or a weekend away and always give each other a card.
For Simon too, meeting Becki was the first time he’d really come across anyone of a similar age who was also adjusting to life after a stroke. He admits he had felt quite alone until she came into his life – he liked her but was hesitant about acting on it.
“At the time I was a bit unsure what kind of relationship we’d have because we’d both experienced something traumatic and I didn’t think it was right, considering everything we had experienced, for it to end in tears.”
They took their relationship slowly, but became closer and found their strengths and weaknesses complemented each other.
Simon looks after the practicalities within the relationship – he cooks and cleans – while Becki concentrates on life admin and helps Simon with his memory.
The couple recently bought their first home in west London and while Becki kept the budget under control, Simon did the physical work.
He says: “Becki sometimes helps fill the gaps in my language at night when I am tired, and I struggle to remember home-related things – household-bills or which drawer my socks are in.”
Becki appreciates the way Simon can do the practical things that she can’t, and says: “The only thing he’s not patient with is when I drop things, and I drop things all the time. He calls me Calamity Cobb.”
From being able to explore a new city on holiday through to “taking the recycling out together”, Becki says They treat each other as if they haven’t got disabilities and expect a lot of each other.
“I think we could be with people who hadn’t been through [a stroke],” she says, “but we balance out and we know the impact of it emotionally.”
Though she admits she no longer feels “invincible”, Becki says there have been positive changes inside her since that day in 2011.
“It’s made me a much more understanding and patient person. Perhaps even kinder too. Now that I’ve met Simon I wouldn’t change it for the world.”
Simon and Becki’s determination not to be defined by their strokes has seen them face another challenge – writing a book together.
HiddenInMe records their experiences and memories and offers advice to others in a similar position. They took it in turns to write different chapters, and edited each other’s work.
Simon says: “Having a timeline written down is a way to remember some of the positive and negative outcomes as a result of it.
“Plus, I wanted to do something I would have never thought of doing before my stroke.
“It can seem like the worst thing in the world but we wanted to show there are successes after it – we found our jobs and we found each other.”
I’m shocked. His Government wants more of us to work, don’t they? So why make it harder for us to find jobs by saying things that would give employers a wrong, negative impression?
Philip Hammond has been criticised for suggesting that more disabled people finding jobs is partly responsible for UK’s falling productivity.
Appearing in front of the Treasury Select Committee, the Chancellor said: “It is almost certainly the case that by increasing participation in the workforce, including far higher levels of participation by marginal groups and very high levels of engagement in the workforce, for example of disabled people – something we should be extremely proud of – may have had an impact on overall productivity measurements.”
He was responding to a question about a 0.1 per cent fall in UK productivity earlier this year.
Opposition MPs describe his comments as ”appalling” and “ignorant”, while disability charities called them “shocking” as they accused Mr Hammond of perpetuating “outdated negative stereotypes”.
Labour’s John Mann, who sits on the committee, wrote on Twitter: “Appalling. Chancellor just linked low productivity growth to the labour market and specified the increased employment of disabled people.
“My experience of employing disabled people is that they are brilliant employees. The chancellors [sic] comments are ignorant.”
Mr Hammond said having more people from “all groups in society” in jobs was beneficial in other ways, even if it reduces productivity.
“Having high levels of workforce participation, and allowing maximum access to the workforce for all groups in society brings benefits in itself, and actually produces larger GDP,” he said. “It may have collateral impact on measured productivity performance.”
However, disability charities said the Chancellor’s comments were “shocking” and “outdated”.
Richard Kramer, deputy chief executive of Sense, said: “It is shocking to hear the Chancellor’s comments today, blaming Britain’s fall in economic productivity on working disabled people. Just last week the Government renewed its commitment to increase the amount of disabled people in work, recognising the important role that meaningful employment plays for disabled people and wider society.
“Philip Hammond’s comments undermine these ambitions completely and many disabled workers will be appalled at such outdated negative stereotypes being reinforced by the Chancellor.
A woman applying for her driving licence received a letter from the DVLA addressed to “multiple sclerosis Caron Garrod”.
Ms Garrod from Goring-by-Sea, West Sussex, had told agency staff about her medical condition when reporting that she had not received mail from them.
She said of the blunder: “I will tell anyone who asks about my condition but this is just so offensive.”
The agency has apologised and promised an urgent investigation.
The DVLA letter from its Drivers Medical Group on 24 November was sent in response to a telephone call Ms Garrod had made to the agency a week before.
She said she had “many feelings about the letter… first anger, then I was horrified when I realised it had gone all the way through the postal system”.
She said she was shocked the agency could be so “insensitive and negligent” to allow it to happen.
She added: “I’m quite a robust person mentally but there are many people with medical conditions who would be severely affected by a situation like this.”
The Office of the Information Commissioner said medical information is classed as “sensitive personal data” under the Data Protection Act 1998.
This means there are stricter rules concerning its processing and security.
It said: “Organisations have a legal duty to ensure that they protect people’s personal information, particularly when it is sensitive data such as medical information.”
A DVLA spokesperson said: “While mistakes like this are very rare, we are extremely sorry for any distress caused.
“We take the security of our data very seriously and we are investigating this as a matter of urgency to ensure lessons are learned.”
This week on Wednesday 6 December at 0930 the Committee will question DWP contractors Atos, Capita and Maximus, who carry out the medical assessments for disability benefits PIP and ESA, putting the disturbing evidence it has heard so far to them. The Committee is also publishing the contractors’ written evidence ahead of their oral testimony.
The unprecedented public response to the Committee’s inquiry has included thousands of individual accounts of medical assessments that range from frustrating to gruelling, and oral testimony from claimants and advocacy groups in the first evidence session strongly reinforced that picture. Many claimants of ESA and PIP in particular challenge the DWP benefit decision based on these medical assessments, first through “Mandatory Reconsideration”, and then a final appeal stage at a tribunal. However, in May of this year an FOI request revealed that DWP sets a target for 80% of Mandatory Reconsiderations to uphold the original decision. The Committee today publishes a letter to DWP asking how such a target is compatible with a fair and impartial reconsideration process. High proportions of DWP decisions for both benefits are overturned at the tribunal appeal stage, sometimes with a radically different award being decided.
The Committee previously published evidence from the Public and Commercial Services Union, representing the DWP staff who use the medical assessments to make benefits decisions. In that evidence PCS says “our members report that there are regular examples where
the level of expertise of the person carrying out the assessment does not appear to match the requirements of the health condition being assessed…” and that “we do not believe that there is any real quality control. Previous contracts have only been terminated when failings reached extreme levels.”
DWP has today released statistics on the proportion of medical assessments that are deemed “unacceptable” when they are sent to the Department by contractors Atos (IAS on the chart below) and Capita. The charts appear to show remarkably high, if slowly improving, levels of unacceptable reports, in Capita’s case at least with extraordinary fluctuations. Key points:
– Neither contractor has, at any point in the PIP contract, met the performance target of 3% of reports deemed “unacceptable”.
– Capita’s own auditing found that at points in the contract almost 60% of its reports were “unacceptable”.
Furious campaigners have accused the government of “cruelty” amid revelations that terminally ill people are assigned “work coaches” under Universal Credit.
The Department for Work and Pensions (DWP) has been forced to defend the situation, described as “outrageous” and “beyond the pale” by end of life charity Marie Curie.
SNP MP Drew Hendry is now leading calls for changes to the way Universal Credit handles the claims of terminally ill people.
It comes as campaigners told HuffPost UK that people with terminal illnesses such as cancer, motor neurone disease and dementia face a raft of “thoughtless” regulations under Universal Credit.
Charities say they’ve seen those with just weeks to live:
suffer delays in payments so lengthy some claimants have died before receiving their entitlements;
forced to confront distressing details of their medical condition, despite many not wishing to do so;
required to meet officials, dubbed “work coaches”, whose role is to “challenge” and “motivate” claimants into work;
and undergo “deeply humiliating and degrading” assessments.
The conditions could end up affecting many thousands of people by the time Universal Credit completes its roll out in 2022, though the number of terminally ill claimants is “relatively low”.
Unlike under previous so-called “legacy” benefits, Universal Credit does not have a team dedicated to helping the terminally ill.
The DWP said it ensures terminally ill claimants are handled “as quickly and sensitively as possible” and that work coaches adapt to an individual’s circumstances.
But Elaine Donnelly of the Highlands Macmillan Citizens Advice Partnership in Scotland, told HuffPost that she has advised terminally ill cancer patients who have been made to undertake face-to-face visits with a work coach as part of the process of signing up for Universal Credit.
‘Everyone has a work coach’
“Anybody undergoing cancer treatment will still be invited in to speak to a work coach because of the way the system is set up,” Donnelly said. “Everyone has a work coach.”
“The onus is on the client to prove they are clinically ill,” she added. “Sometimes they send somebody out to the house to check an ID, but sometimes a work coach will go along with them.
“They tend to, once they know [a claimant is terminally ill], kinda back off a bit.”
The main job role of a work coach has been described by MPs as “to support claimants into work by challenging, motivating, providing personalised advice and using knowledge of local labour markets.”
“It is remarkable,” Donnelly said.
“It’s almost like the government have forgotten that many people claiming Universal Credit are unwell or terminally ill,” she added.
“We’ve not seen one claim go well from start to finish.”
Jill Fennell, whose partner, Mark, applied for Universal Credit after a terminal diagnosis, described her encounter with a work coach.
“Mark subsequently found out he has to have a fitness to work telephone interview,” she wrote in an open letter which went viral on Facebook this year.
“I called the Universal Credit work coach to ask if she was aware he is terminally ill and has difficulty speaking as he has mouth cancer. She said she did, but said it still had to be done.
“I cannot think of any words that express my contempt for her callous and emotionally bankrupt approach to Mark’s predicament.”
Disability News Service reported last year on government proposals to force people with debilitating, lifelong conditions, including the terminally ill, into repeated contact with work coaches.
[Do you or someone you know receive Universal Credit? Share your experiences with our reporter at George.Bowden@huffpost.com]
Delays to payments
Donnelly said she has even advised clients who have died before any payments were made through Universal Credit.
“We’ve not seen anybody fast-tracked through for an earlier payment. In fact we’ve seen people who are terminally ill dying before their Universal Credit is processed,” she said.
“They’re in rent arrears and are dying thinking they are in rent arrears and it’s through no fault of their own.”
Drew Hendry, MP for Inverness who held a Commons debate on the issue this week, told HuffPost several of his own constituents had reported they were forced to understand every detail of their prognosis, even if they preferred not knowing.
A requirement for claimants to “self-certify” means that they must tell the DWP if they have received a terminal diagnosis.
Further rules governing “explicit consent” restrict the ability of relatives and advisors to handle benefits claims on their behalf, a change on previous systems.
Those rules mean a form called the “DS1500”, which estimates the likelihood that someone will live for six months or more, cannot be submitted on a claimant’s behalf by their doctor, forcing them to confront their own prognosis.
And, if it is likely someone will live beyond six months, their claim is not considered more quickly.
‘No special help’
“There are no special help facilities for terminally ill people,” Hendry said.
“It’s still not possible for health professionals to do everything that is required to get a diagnosis through the system,” he added. “The person claiming still needs to do something to get it through.”
And during his Commons debate on Wednesday, Hendry told MPs: “Those with severe and progressive conditions, including terminal illnesses, are all given work-focused interviews, which is clearly insensitive.”
He cited the example of a constituent, John, who was forced to conduct a capability assessment despite having a terminal diagnosis.
“When asked if he could walk 50 yards he said no, so he was asked again if he could do it and asked if it would be possible to do it even if it took a long time,” Hendry said.
“When again he said no, he was asked if it was an emergency and he absolutely had to walk 50 yards could he do it, at which point he felt so pressurised he said yes,” he added.
“The overview of the assessment said he could reasonably walk 50 yards, the assessment process is deeply humiliating and degrading, putting claimants in a position were they often feel bad about not being able to carry out certain tasks.”
Now Hendry is calling for changes to the system to help those most in need.
“A cruel condition like this can easily be overturned and replaced with something that gives terminally ill people dignity and respect,” he told HuffPost.
“We want to see the waiting time removed for terminally ill people, to make the process simpler for a terminally ill person, to allow implicit consent and to reinstate the severe disability allowance, which is a huge sum across the year.”
The additional costs of a terminal illness are estimated to be around £12,000 a year.
Simon Jones, head of policy and public affairs at terminal illness charity Marie Curie, told HuffPost that assigning work coaches to those who are terminally ill “imposes indignity”.
“It is clearly not appropriate for someone who has been clinically assessed that they are terminally ill to have a visit from someone who is going to help them back to work,” he said.
“You have been given what must be one of the most life-shattering pieces of news you can get, and then to impose the indignity on someone by even suggesting there is a route back to work in those circumstances is quite frankly outrageous, it’s beyond the pale.
“In those circumstances, all anyone should be thinking of is ‘what can we do to support this person to give them the best quality of life before they die’.”
Jones said that any delay to payments for those with less time left can have a real impact on quality of life.
“With motor neurone disease, the time between diagnosis and death is particularly quick and it affects younger people, which means it is more likely that benefits will help support your life, especially if you had been working,” he said.
‘People cannot afford to wait’
And Macmillan Cancer Support Head of Policy, Tom Cottam, said: “Everyone with cancer should have timely access to support when they need it, and this absolutely applies to Universal Credit.
“We know some people with terminal cancer are having difficulties accessing the benefits they are entitled to, and are concerned that there is a serious problem with the system.
“Many of these people cannot afford to wait and should not be put through any additional and unnecessary stress.”
Work and Pensions Minister Damian Hinds responded to Hendry’s Commons debate with a defence of the policy, describing individual examples of problems as being “unintended”.
“Things can go wrong and when they do I am sorry for that,” he said.
A DWP spokesperson said: “We make sure terminally ill people receive support immediately. This includes helping people make their claim and ensuring it is handled as quickly and sensitively as possible.”
This appeal was initially to help fund an application for British citizenship for a Nepalese British born child, Sunny aged 7 who is autistic. He was born in the UK on 4th November 2010 to Nepalese parents, while his mother was a student here. He has 2 younger siblings, and his family have been fighting a humanitarian immigration battle to remain in the UK so Sunny can receive support for his autism in education and socially using communication tools like Makaton, which have even helped his parents to reach out to him.
Whilst waiting for the further application, Sunny and his family have had the most cruel blow as his mother Bal Kumari has suddenly passed away aged just 30 on 24th November , leaving her distraught husband with having to care for the three children, the youngest is still only a toddler.
Since the diagnosis of Autism Spectrum Disorder was confirmed on 13th March 2014, Sunny has been regularly monitored by a medical and other support team with whom he has formed a bond. Although he is non-verbal, The use of Makaton to support the spoken word, helps Sunny and those with autism develop communication skills, the ultimate aim being to eventually entirely abandon the signs and symbols for support. Sunny is lucky to have this help around him and his family, as even normal education is not available to all children in Nepal. His school says:
“Sunny’s communication has greatly improved since being with us”
“Sunny is making steady progress in all aspects of learning and in the time we have known him he has increased his P Levels in the key areas of Literacy, Numeracy, Science and PSHE.”
“Home school communication is extremely positive and effective and both home and school are really happy with the placement.”
In addition to his special needs academic learning, Sunny also actively participates in a holistic range of co-curricular school activities and programmes at his School, such as swimming, trampolining, forest schools, drama and plays.
There are no such team services in Nepal for autistic children. The earthquake in Nepal in April 2015 had also made any prospect of returning to Nepal even more difficult for Sunny’s family as many schools, hospitals and homes were completely obliterated. The majority of survivors still live in relocation sites more than 2 years after this catastrophic event. This destitute and devastated family now need your help, even more so they can have some stability of tenure and try and deal with their immense loss.
We couldn’t imagine Albert Square without the brutally honest and wonderfully sassy Donna Yates, and funnily enough that sass is exactly why Lisa Hammond is where she is.
Speaking to The Islington Gazette about how she first got into acting, EastEnders star Lisa admitted that the secret to her acting success was “being mouthy”.
Not that she wanted to be an actress in the first place.
Revealing all about how she nabbed her first role on children’s drama series Grange Hill back in the ’90s, Lisa remembered: “Scriptwriters… were visiting in a search for disabled characters.
“I was being mouthy as usual, but they asked me to audition and that accident is what launched my career.”
Adding that she “fell into acting”, the ‘Enders regular said: “Everyone always says to me, ‘Ah, you must have gone through [Islington drama school] Anna Scher Theatre.’
“I have to say… I didn’t! I had no intention of being an actor. I wanted to be a lawyer.”
Lisa made some life-changing discoveries as part of the BBC series, after finally figuring out the intrigue surrounding her grandfather Harry Hammond.
She learned that Harry fought in the Allies’ Italian Campaign during WW2, but was captured in 1943 before spending 17 months in prisoner of war camps in Germany.
A woman who lost a leg in a speedboat accident has appealed for her prosthetic limbs to be returned after they were stolen from her car.
Victoria Milligan, 45, is unable to work or exercise after her running blade and two other prosthetics were taken by thieves on mopeds in Fulham, west London, on Sunday.
Milligan, a personal trainer, lost the leg in an incident in 2013 in which her husband, Nick, 51, and eight-year-old daughter, Emily, were killed.
“I want to appeal to the thieves, I really need to get my legs back,” she said. “They’re of no use to them whatsoever and have no resale value.
“I just hope they dump them somewhere. They’re not going to fit anyone else, they’re very expensive but are totally useless to anyone but me.
“I can’t really work or exercise, I’ve got my everyday leg, but it’s nothing compared to my blade. It’s so frustrating, it takes three months to have them remade.”
The artificial limbs, worth £30,000, were in a light grey Eastpak wheelie suitcase that was stolen with another bag containing a laptop and clothing.
Two men reportedly smashed the windows of Milligan’s car in Michael Road while she was in a nearby restaurant. Police have appealed for anyone who witnessed the incident to come forward.
Insp Darren Desa described the theft as “heinous” and said: “I would also appeal to anyone who knows where the prosthetic legs are to do the right thing and hand them in to police or inform police where they are. They are of no use to anyone but the victim.”
Milligan, who was the managing director of Sky’s advertising sales division, died with his daughter in the Camel estuary in Cornwall when the family of six were thrown into the water as the speedboat turned sharply, before circling dozens of times and hitting them at high speed.
Anyone with information can call the Metropolitan police on 101 or Crimestoppers anonymously on 0800 555 111.
Ministers say the new strategy will help those with disabilities keep their jobs and progress in their careers.
The new measures include widening the number of people who can issue fitness-to-work notices and additional training for mental health professionals.
Labour’s Debbie Abrahams said benefit cuts had already pushed more disabled people towards poverty.
‘Tackling injustices’
The pledge comes after ONS figures from June 2017 suggested that disabled people were twice as likely to be unemployed as non-disabled people.
About 80% of non-disabled people are in work compared with just under 50% of disabled people.
Prime Minister Theresa May said a person’s life and career “should not be dictated by their disability or health condition”.
“Everyone deserves the chance to find a job that’s right for them,” she added.
“I am committed to tackling the injustices facing disabled people who want to work, so that everyone can go as far as their talents will take them.”
The government says in the past four years 600,000 disabled people have found work. However, the disability charity Scope says progress is too slow.
The new strategy includes:
Measures to provide access to personalised support for those with mental health issue
Extending “fit note” certification – which details how a condition affects someone’s ability to work – beyond GPs to a wider group of healthcare professionals, including physiotherapists, psychiatrists and senior nurses
Reform statutory sick pay
The 10-year plan builds on a green paper published last year which pledged to halve the so-called disability employment gap.
Employers’ attitudes
The government hopes the changes to the fit note system will improve the identification of health conditions and treatments to help workers get back to work quickly.
But some disability activists say the problem lies in employers’ attitudes. Mik Scarlet, an inclusion specialist, says he chose to be self-employed after some “disastrous attempts” at getting work.
“Employers have little idea of how beneficial disabled employees can be to a workforce,” he said.
“They also don’t understand that creating flexible inclusive work systems improves the working environment for all.”
BBC disability correspondent Nikki Fox said it was not the first time the government had pledged to get more disabled people into work.
However, she said “the employment gap between disabled and non-disabled people has not significantly changed for some years”.
Labour’s shadow work and pensions secretary, Ms Abrahams, warned the government’s plans “hinted at” further cuts.
“The Tories’ cuts to social security support are pushing more and more disabled people into poverty,” she said.
“The Tories have already hit disabled people who are not fit for work but who may be in the future in the work related activity group.
“I hope they are not going to now target the most disabled people in the support group, as their green paper hinted at.”
Casualty star Amanda Mealing has opened up about Connie Beauchamp’s harrowing cancer storyline, revealing it brought back her post-traumatic stress disorder.
The popular clinical lead is currently undergoing chemotherapy treatment after being diagnosed with a cardiac tumour early last month.
The hard-hitting plot has been particularly challenging for Amanda, who battled breast cancer in 2002, shortly after giving birth to her second son.
Speaking to TV Times, Amanda said: “It’s been a challenge; more than I thought it would be. To play a person struggling with cancer is to tell myself all day, every day, that I am sick.
“In some scenes, I heard those words said to me for real. It invited back old anxieties and my post-traumatic stress disorder reared its head again.
“I’m happy to say that I sought help at the time PTSD was most debilitating, and was able to do so again this time. Anyone who’s survived or is fighting cancer or trauma will have been as affected as I was. When one is faced with one’s own mortality, it’s not something you can ignore.”
However, Amanda doesn’t regret taking on the challenging storyline as she insists that Casualty should be tackling these real-life issues.
“It’s very close to my heart,” she added. “Because Casualty is a primetime drama, it is our duty to highlight issues that may, and do, affect the whole nation.”
Casualty continues on Saturday, December 2 at 9.10pm on BBC One.
Claimants who are entitled to new style employment and support allowance (ESA) are being pushed into claiming universal credit (UC) instead, even though they may be much worse off as a result, due to the inflexibility of the claims system and the poor training given to DWP staff.
Welfare rights workers are reporting huge problems with claiming new style ESA, which is available to some claimants who have paid sufficient national insurance contributions.
Claimants phoning the UC claim line in Full Service areas discover that every single option relates to UC.
Even if you choose ‘Any other queries’ from every option, you are likely to be put through to a DWP call handler who knows nothing about how to claim new style ESA.
One advisor said that the call handler stated that they had specific guidance about new style ESA but, when he consulted it, the guidance told staff to contact his team and they would deal with it.
After getting further advice the call handler then explained that claims for new style ESA are completely separate from UC, even though claimants must use the UC line to make their claim.
The call handler then said he could either email or post out a form for making the claim and said that he would raise the problem as a training issue as his colleagues probably didn’t know any more than he did.
Undoubtedly a lot of people will give up and simply make a claim for UC instead when faced with a bureaucratic brick wall like this.
But new style ESA is potentially a better benefit for many people to claim, not least because:
it isn’t affected by your savings;
it isn’t affected by your partner’s earnings;
it is paid fortnightly, not monthly.
Some claimants are eligible for both new style ESA and a top-up of UC.
Anyone trying to make a claim for new style ESA is advised to be very persistent in insisting that they are claiming this benefit rather than UC, no matter how hard call handlers try to persuade you otherwise.
The DWP have announced the proposed benefits increases for the year beginning April 2018. Personal independence payment (PIP) and disability living allowance claimants (DLA) will see a rise of a minimum of 65p up to a maximum of £4.25 a week, depending on what components and rates they receive. Employment and support allowance (ESA) support group claimants will get an extra £1.10 a week.
Whilst many working age benefits, such as jobseekers’ allowance continue to be subject to the four year freeze which began in April 2016, there are very small increases in other benefits including carers allowance, DLA, PIP and the support component of ESA.
Carer’s allowance is rising from £62.70 to £64.60 a week.
Disability living allowance rate rises are as follows:
DLA care component Highest rate rising from £83.10 to £85.60 Middle rate rising from £55.65 to £57.30 Lowest rate rising from £22.00 to £22.65
DLA mobility component Higher rate rising from £58.00 to £59.75 Lower rate rising from £22.00 to £22.65
Employment and support allowance work-related activity component continues to be frozen, but the support component will rise from £36.55 to £37.65
Personal independence payment rate rises are as follows:
PIP daily living component Enhanced rising from £83.10 to £85.60 Standard rising from £55.65 to £57.30
PIP mobility component Enhanced rising from £58.00 to £59.75 Standard rising from £22.00 to £22.65
A House of Commons inquiry into disability benefits has heard from more than 3,000 people in despair at the system, including dozens who say they have been driven to suicidal thoughts by the process.
Frank Field, the chair of the work and pensions committee, said it would be usual to receive about 100 responses, but the inquiry had been deluged by people sharing stories about being denied disability benefits or battles to keep their entitlements.
The evidence includes testimony from many saying their mental health had deteriorated as a result of trying to claim the employment support allowance (ESA) for daily living costs and/or the personal independence payment (PIP) to cover the extra costs caused by long-term disability.
It comes after longstanding concerns among mental health groups, medical professionals, user groups and MPs about the operation of both benefits, which see claimant assessments run by outsourced providers and final decisions made by officials at the Department for Work and Pensions (DWP).
The submissions included more than 100 people reporting that they or someone they care for feels their suicidal feelings have worsened or been triggered by the process.
Andrew H, who has post-traumatic stress disorder after leaving the armed forces, described how “this whole experience has left me on the verge of suicide [and] makes me wonder why did I put up with the things I had to do in Northern Ireland or clearing bodies from mass war graves in Bosnia”.
Claire, who has mental health problems, wrote to the committee to say: “The assessor had to write things like if you were ‘rocking’, which made me feel like the DWP got their ideas of mental illness from fiction books … I had to fill the form in again recently and I believe that this has triggered another crisis period, which meant that I ended up attempting suicide.”
Carolyn T, who has depression, anxiety and panic attacks, told the MPs: “I already feel worthless, having no family or friends, but to feel like a parasite and harassed by the DWP is making me feel suicidal and I’m trying so hard to keep myself from ending it all.”
Several common themes arise in the complaints from claimants, including:
Medically inappropriate questions. Charities reported clients being asked by assessors where they had “caught” Down’s syndrome from or how long they had suffered from spina bifida;
A mismatch between what the claimants had told assessors about their conditions and what the written reports about them said. One person who is a telephony agent at the ESA benefit inquiry line wrote in to say: “Customers are always saying the DWP decision-makers’ written report doesn’t reflect what happened in the assessment room.”
Assessors overlooking disabilities or illnesses that are not immediately visible. One respondent called Lisa said: “If you look well enough then you don’t get it. I’m struggling to live on the £73 a week, I’m not sure I can cope with being turned down again. Have even considered suicide. I’m at my wits’ end, please help.”
Field, a former Labour welfare minister, said the whole system was “not controlling expenditure and had a huge human cost”.
He added: “These are carefully written pleas of anguish and for help from individuals. This system is acting as a concrete block on the top of people rather than acting as a floor from which people can build security through their own efforts. It’s just absolutely dreadful.
“We expected to get about 100 letters and we have had over 3,000 and they are still coming in although it is after the date. We’ve never had a tidal wave like this. None of these are campaign letters, which we have discounted. We have only kept those from people who have have spent huge time and effort to portray the misery of what has resulted for them.”
An official review found distrust in the operation of PIP last March, which the government is due to respond to by the end of the year.
The DWP defended the system in its evidence to the inquiry. It said the number of wrong decisions remained low, with only 8% of 2.3m ESA decisions and 2.6m PIP decisions appealed and 4% overturned. However, critics say that means around half of the decisions that reach the stage of appeal are later reversed.
The department said the majority of claimants were satisfied with their treatment by the system, which involves three outsourced providers: Maximus, Atos and Capita.
A DWP spokesperson said: “We always aim to provide the very best service to people with disabilities and health conditions. That’s why assessments are carried out by qualified healthcare professionals who have at least two years of practical experience and must be registered with a medical body. “The latest official research shows that 76% of PIP claimants and 83% of ESA claimants are satisfied with their overall experience.”
When the America’s Got Talent finalist Mandy Harvey first appeared on the show, she caused a social media storm. Harvey became deaf due to an illness, but decided to pursue her love of music, feeling the beat of the music through her feet. However, her singing caused a backlash among a very small minority, who sent Harvey death threats for promoting a “hearing” activity.
There is a long history of oppression faced by profoundly deaf individuals of which most hearing people are too little aware. Sign languages have historically been the target of repression, and many who are profoundly deaf have suffered at the hands of hearing people. Oralism – the practice of favouring speech over sign in deaf education – and the assumption that speech is an inherently superior form of communication can be damaging, both to deaf individuals and the deaf community. Even today, organisations will equate speech with potential, ignoring an equally valid language and culture in sign.
Deaf people – those whose preferred language is sign and belong to the capital D “Deaf community” – have had to fight for their rights, language and culture against this oppression. In that context, the strong feelings of an unrepresentative few can be understood, even if their behaviour can’t be condoned.
The Harvey story, however, reopened the binary oralist versus signing argument. A recent segment on BBC’s Newsnight reporting on the story asked whether we should “promote oralism in the deaf community”. That’s such a frustrating way of framing the debate. The focus should be how we can spread awareness and greater accessibility for everyone, not forcing deaf or hard-of-hearing people to declare themselves as belonging to a speaking or signing camp.
Increasing our deaf awareness is a lesson we can all continually learn, even those with the best of intentions. Newsnight’s producers deserve some kudos for attempting to draw attention to an under-represented issue, and for inviting deaf guests on television. Paradoxically, however, the clip was not accessible to many viewers. There were no subtitles for those struggling to follow the British Sign Language interpreter. The camera panned away from signing guests, breaking the flow of conversation for anyone following along.
I’m severely deaf, and was born to a hearing family. Instead of being taught sign, I was taught to lip-read, and went to speech therapy classes. I rely on my hearing aids and I have a well-honed instinct for when to smile and nod during a conversation, if what’s being said escapes me. But the dichotomy between sign and speech can leave people like me feeling stuck between two worlds: too deaf for the hearing, too hearing for the deaf.
It also risks promoting a myth of a militant deaf community, acting as jealous gatekeepers of what it really means to be deaf. A casual observer reading the story about Harvey could be forgiven for thinking that the deaf community, in America or elsewhere, is far more intolerant than it really is.
It would be more productive to ask how we can make things more accessible for deaf people, accounting for their needs and choices. Deafness is a spectrum, and our needs will vary. For some people, signing is a more accessible way of communicating than speaking. For others, speaking and lip-reading work for them.
Hearing people need to play their part in this. Practically, this can be something as small as not turning your back when speaking, or enunciating clearly to make lip-reading easier. But more fundamentally, it means a normative change in how deafness and deaf people are viewed. Deaf people are commonly seen as broken – in need of fixing. But with deafness can come a rich and vibrant language in sign, and a culture and community based on that.
Hearing people need to be sensitive to that fact when thinking about deafness. There are, for instance, endless videos on social media of deaf children given cochlear implants, hearing sounds for the first time, often shared by hearing people as inspirational modern-day miracles. Yet to many signing deaf people, they can represent something far more sinister: the absence of choice and the removal of deaf culture. The implicit message of such videos can be to underscore the supposed superiority of speech over sign.
However, we also need to be careful about how we refer to other people with hearing loss. To refer to someone as “oral” can be an insult – a way of denoting that someone isn’t truly deaf. But being born into a speaking family, and communicating by speaking doesn’t invalidate my deafness.
We don’t need to reductively frame this as a clash of communication. Deaf people, whether they choose to sign, to speak or both ought not be forced to pick sides. In moving beyond the dualism, we can focus on what matters: making a world that is accessible to everyone who is deaf, however they may experience that.
Thousands – perhaps even millions – of people could have trouble obtaining a mortgage because of problems with the way the government’s universal credit system and banks and building societies “talk” to each other.
A Guardian Money investigation into the difficulties experienced by a homebuyer living in one of the areas chosen to test the new benefit has revealed that some recipients could be at risk of being turned down for a mortgage. Some lenders are saying they will not accept universal credit at all when calculating how much they will lend, while others have apparently not amended their IT systems to deal with it – leading to problems and delays. On its published list of acceptable income types, Halifax’s website simply gives a blunt “no”.
Many lenders do accept it in some situations, but a key problem is that the most up-to-date version of universal credit is fully online and paperwork-free. Many banks and building societies, however, still insist on an official “hard copy” letter detailing how much benefit someone is getting. In essence, it’s an “old tech v new tech” clash.
Quick Guide
What is universal credit and what are the problems?
At the moment there are a relatively small number of people on this so-called “full service” digital version of the new benefit. However, the roll-out is being ramped up dramatically. By 2022 an estimated 7 million people are expected to claim universal credit, which incorporates six different benefits and tax credits (including child tax credit and working tax credit) into one (see below).
The mortgage problem came to light after Julie Broughton* contacted Money to say that she was worried she could lose the mortgage that had been agreed in principle by NatWest. She said the bank had slashed the amount it was willing to lend her from £103,000 to just £59,000 because she wasn’t able to provide it with a written letter from the Department for Work and Pensions detailing the breakdown of her payment.
“Because I can’t provide them with that one bit of paper, they have removed that income from the total … this is going to affect so many people who may now not be able to obtain a mortgage,” she claimed.
Broughton, who lives in north-east England, is among the first tranche of people to be moved to the fully digital service. At the moment around 600,000 people are on universal credit, though most of these are on the slightly less hi-tech “live service”.
Broughton is a divorced single parent who works for a charity and is currently selling the former marital home and buying a smaller property. Her income – from work, maintenance from her ex-husband, and universal credit – plus the equity she already has in the property, means she can afford a mortgage in her own right.
An “award letter” from the DWP can be a useful way of officially proving entitlement to a benefit, but it is understood that these are no longer being posted out. Some individuals applying for a home loan are submitting a print-out or screen-grab from their universal credit online account – as Broughton did – but this is being rejected as unacceptable.
Another problem is that while universal credit incorporates lots of existing benefits, many lenders only accept some of these when totting up an income. If the individual is unable to provide a clear breakdown of their benefits, the lender may decide not to take any of the payment into account.
All of these could mean a big cut in how much someone is able to borrow – which could be disastrous. Broughton’s case could therefore be the tip of the iceberg.
While Halifax says a flat “no”, it adds that it does accept some of the components of the benefit as income, including working tax credit and child tax credit. By contrast, Leeds building society says it will consider working tax credit but not child tax credit.
Catherine McKinnell is Labour MP for Newcastle upon Tyne North, and Broughton is one of her constituents. She told Money that “it cannot be right that the very system that is supposed to be a safety net is standing in the way of finding a home, and is clearly going to affect many others if it is not urgently addressed”.
She adds: “It is yet another example of how the implications of an entirely online benefit simply haven’t been thought through.” She has raised the issue directly with the DWP and asked it to come up with a solution.
David Hollingworth at broker London & Country says that when he asked mortgage advisers at the firm about their experiences, one reported a case of a client who was in receipt of universal credit and was seeking a mortgage from a leading lender. In that instance, the lender wasn’t able to confirm the split between the different components of the benefit, only some of which it would accept. As a result the lender decided it wouldn’t take any of the client’s payment into account.
The good news for Broughton is that NatWest later agreed to approve her application. But she says it “remains firm that without the paper statement, it will not include universal credit in its calculations. Though the outcome for me has been positive, it seems unlikely that future applicants will be as successful”.
Money contacted the DWP about these issues. It told us that universal credit is modernising the welfare system and gives people 24-hour access to information about their claim, in the same way that many people bank online.
It adds: “Everyone’s claimant statement shows the breakdown of their payment. People can show this via their online account or print out their statement. A lender should accept this as evidence, but if they refuse people can speak with their work coaches.”
NatWest, however, confirms that it still requires “written proof”. “We need to fully understand the breakdown … we haven’t been told that situation has changed. The reason is that these online print-outs don’t include the breakdown required”.
Universal Credit>> “People on legacy benefits who don’t have a change of circumstances will remain on those benefits until managed migration, with transitional protection, starts in July 2019. Anyone on legacy benefits who has one of a number of changes of circumstances, including someone on HB moving to another local authority area won’t be able to make a new claim for HB and so will have to claim UC which in turn will mean their ESA will end. This natural migration will mean less money because there’s no transitional protection. Unfortunately, some DWP staff, some HB staff in other areas and even some independent advisers are telling people to claim UC without checking if they really have to”
Hi readers, sorry for being late in posting today, we had a mini meeting after the demo and as a result I haven’t had time to write the blog.
Anyway todays demo was a hard one as usual. The weather was awful yet again and we were busy from the offset. Every week its different and I never know what to expect and it would be wrong to expect anything wouldn’t it. Every person is an individual and their problems and worries are different as a result. Also every advisor is different, some are harsher than others, much harsher. Some have got a good reputation so far and yes I know who you are.
As I arrived I was stopped by a man straight away. He’s in an awful situation, his ESA was stopped and he’s now awaiting his first JSA payment to be made. Because he is appealing the…
Universal credit claimants will only have to wait five instead of six weeks for their first benefit payments after Philip Hammond bowed to pressure to ease hardship caused by the new welfare system.
Conservative MPs had threatened to revolt over the suffering caused by the long wait, which charities and councils have said was leading to evictions and increased use of food banks.
The chancellor will also allow housing benefit to continue for an extra two weeks after the start of a universal credit claim to reduce the threat of eviction.
However, the changes will not come in time to help claimants struggling before Christmas, as they only take effect from next year.
His U-turn was partially welcomed, but Labour and other opposition parties said it did not go far enough in addressing problems with the new system, which is designed to roll six existing benefits into a single monthly payment.
Jeremy Corbyn, the Labour leader, called on the government to “pause and fix” the rollout instead of making minor changes, as people were still facing delays with their claims and threats of eviction.
Under the measures announced in the budget, the chancellor cut the time people have to wait for their first payment by seven days and promised that hardship loans could be repaid over a year rather than six months.
The measures to ease the financial difficulties of new claimants amount to about £300m a year. In the small print of the budget book, it was revealed the rollout of universal credit was being slowed down, with a more gradual introduction to jobcentres by December 2018.
Quick Guide
What is universal credit and what are the problems?
The dozen Conservative MPs who fought for changes to the system were delighted with the one-week reduction after the government had initially refused to reduce the wait.
David Gauke, the work and pensions secretary, had defended the working of the system as recently as Tory party conference in October, announcing only minor changes to the hardship loans at the time.
Heidi Allen, the Conservative MP leading the calls for change, said the announcement was “a victory for common sense and compassion”.
She told the Guardian: “The government had struggled to technically get the system to reduce any further than five weeks, but what they have done instead, by offering housing benefit to be carried across for two weeks, is tremendous. All the risks of homelessness and rent arrears, it deals with it straight away.”
Iain Duncan Smith, the former work and pensions secretary who was behind the introduction of universal credit, said: “The chancellor is absolutely right to make advances more readily accessible for claimants waiting for their first instalment of benefits. No one should have to wait excessive periods to receive their first payment.”
However, opposition parties, charities and trade unions were underwhelmed by the changes.
Frances O’Grady, the general secretary of the Trades Union Congress, said it was a “small step forward, but big changes are needed or working people will be left thousands of pounds a year worse off”.
Corbyn said the verdict on the frontline was that food bank use increases 30% wherever universal credit is rolled out.
“This chancellor’s solution to a failing system causing more debt is to offer a loan. And the six-week wait, with 20% waiting even longer, becomes a five-week wait,” he said.
“This system has been run down by £3bn cuts to work allowances, the two-child limit and the perverse “rape clause”; and caused evictions because housing benefit isn’t paid direct to the landlord. So I say to the chancellor: put this broken system on hold, so it can be fixed, and keep a million more children out of poverty.”
Stephen Lloyd, the Liberal Democrat work and pensions spokesman, said the rollout “must be paused before even more of our most vulnerable citizens are made to suffer on the ideological anvil of this Conservative government”.
The families of two men who suffered broken legs in a care home have asked for the cases to be included in an ongoing police investigation.
Police are investigating nine Sussex Health Care homes amid claims 43 people were neglected – of whom 12 have died.
Matthew Bates and Gary Lewis suffered fractured thighs at Beech Lodge in 2015 but their cases are not part of the current probe, their families said.
Sussex Health Care said both cases were investigated by the council and police.
It said it had “co-operated fully with those investigations” in 2015.
Sussex Police has not commented to the BBC on why the two cases were not included in the current investigation.
Mr Lewis, who was 64 at the time, and Mr Bates, who was then 30, both have cerebral palsy and limited communication. Mr Lewis also has osteoporosis.
Their families told the BBC’s Today programme both men were taken to hospital on the same day and an A&E doctor triggered a safeguarding alert.
Mr Lewis had a complete split of his left femur and Mr Bates suffered a severe mid-shaft fracture to his right thigh at the home in Horsham.
Mr Bates’s father, Mark Bates, said: “Something had gone desperately wrong in that care home.”
Mr Lewis’s brother, Martyn Lewis, said: “That this can happen once and then twice in such a short space of time seems to indicate there is something systemically wrong with the care being offered in that facility.
“We need to know what happened to our lads.”
Following the injuries, a safeguarding inquiry by West Sussex County Council criticised the company and concluded the men’s “fractured legs were likely to have been caused when [they] were rolled or turned”.
Three orthopaedic consultants told the BBC the situation warranted serious investigation and Mr Bates’s injury, despite the impact of cerebral palsy on his bones, was a particular worry.
Two of the specialists said “rough” or “poor” hoisting could explain the injuries.
The men’s fractures were mended with metal plates and screws, and neither returned to Beech Lodge.
After the families complained, Sussex Police investigated but no-one was charged.
In a statement, the force said “following a full investigation no criminal charges were brought in relation to their case”.
“A serious case review has been commissioned by the West Sussex Safeguarding Adults Board in relation to these incidents. The review is conducted by an independent author and is currently being compiled and will be published in due course.”
A Sussex Health Care statement said Beech Lodge “supports people with complex needs, including physical conditions such as osteoporosis, which can make bones very brittle”.
“Both cases were subject to comprehensive safeguarding investigations at the time, involving the county and the police,” it added.
“We co-operated fully with those investigations, which found no evidence of poor handling or any other wrongdoing.”
Police confirmed the extent of the probe in August, when officers said the investigation was examining the standard of care in individual cases since April 2015 and seeking to determine whether care standards fell to a criminal level of neglect, ill-treatment or negligence.
Paralympian athlete Anne Wafula Strike has won a financial settlement from CrossCountry trains after she was forced to wet herself on a rail journey because the accessible toilet was not working.
The athlete and campaigner welcomed the settlement and the rail company’s efforts to improve services for disabled travellers but said there were still a lot of changes required before transport could be considered truly accessible for all.
“I can’t describe this settlement as a victory. It will be a true victory when what happened to me no longer happens to any disabled traveller any more,” said Wafula Strike. “I was on a train on 13 August this year when I found that the accessible toilet was broken. Fortunately I did not need to use it on that occasion but what about other disabled passengers on that train who might have needed to use the toilet urgently?”
The Guardian revealed earlier this year that Wafula Strike was travelling from Nuneaton to Stansted on 8 December 2016 when she discovered that the accessible toilet was out of order. Her entire journey from Coventry to her home in Harlow was several hours and she was forced to urinate on herself, a situation which left her acutely distressed and humiliated.
The train company apologised and have now made a confidential compensation payment.
Wafula Strike’s solicitor Sue Willman, at Deighton Pierce Glynn, welcomed the settlement but said more needed to be done to truly improve travel for disabled people: “Disabled people like Anne who have suffered degrading treatment when travelling contact my firm all the time. It is important that Anne has made a stand and that train operators are starting to take their legal duties to disabled people more seriously. But I think we need the rail minister to introduce legal sanctions, not just encouragement, to really see a difference.”
Alongside the financial settlement, Wafula Strike has agreed to enter into dialogue with groups representing disabled transport users.
The Department for Transport has drawn up a draft accessibility action plan and is consulting on how access can be improved. The consultation ends on Wednesday and Wafula Strike urged as many disabled travellers as possible to respond.
The draft action plan includes calls to improve the quality and availability of information on accessible toilets at stations and on trains, highlighting the need for better training for transport staff of the requirements of people with disabilities. It also suggests taking steps to address the challenges facing people with disabilities when seeking spontaneous travel.
Paul Maynard, the parliamentary undersecretary for rail, accessibility and HS2, said people with disabilities had the same right to travel independently as anyone else and he was committed to delivering a transport system that worked for everyone.
Wafula Strike said she would be donating some of the money she received to a disability charity and using the rest to continue to campaign for truly accessible travel for people with disabilities.
A spokesperson for CrossCountry said: “We are pleased to have reached an agreement with Mrs Wafula Strike after her experience when travelling with us last December. Since then, we have undertaken a thorough review of our processes, new accessibility training, enhanced maintenance for toilets and other arrangement to help all our customers.
“While we have apologised for the events that day, a lot of good has also resulted from this, with the whole rail industry looking at ways to make Britain’s railways a more accessible environment.”
You should already know that the Conservative government has made enormous “mistakes” that have deprived around 75,000 claimants of the sickness benefit ESA of £500 million in benefits.
In This Site’s article about it a couple of days ago, I asked how claimants find out whether they have been underpaid – and how long it would take for them to get restitution.
The piece quoted tweets by Nick Dilworth, who writes informatively about benefits on his ilegal.org.uk site.
Little did I know that, as I was writing that article, Nick was probably already in the process of answering my questions – drafting a template letter for ESA claimants who want to contact the DWP to find out exactly what is going on and whether it affects them.
Here it is (Credit: Nick Dilworth @mylegalforum ilegal.org.uk):
[Your Address]
The Customer Complaints Manager
[Address of your Employment & Support Allowance Office]
*shown on your most recent correspondence from them
Date
Dear Sir / Madam,
National Insurance No:
Arrears of Employment & Support Allowance which may be owed to me through your official error
My attention has been drawn to some recent media coverage by the BBC entitled ‘Mistakes in benefits claims could cost up to £500m’ (dated the 17th November 2017). As a result of this I am making an official complaint, I believe I may be affected and entitled to arrears of Employment & Support Allowance.
The media coverage states:
“The errors identified by the Department for Work and Pensions affect the main sickness benefit, the Employment and Support Allowance (ESA). The BBC understands that assessors wrongly calculated the income of around 75,000 claimants. Ministers say that they are aware of the problem and that repayments have begun to be made. The department, which says it discovered the mistakes last December, is understood to have contacted about 1,000 people so far. It says it is still trying to understand the scale of the problems with ESA, which is paid to about 2.5 million people, and will contact anyone affected.”
Having made some enquiries, I understand that I may be an affected individual because I underwent a ‘conversion’ assessment from older Incapacity Benefits / Income Support paid on the grounds of incapacity for work / Severe Disablement Allowance. My recollection is that this was subject to a decision made by you on or about the [insert date].
The conversion process should have been carried out in accordance with the Employment and Support Allowance (Transitional Provisions, Housing Benefit and Council Tax Benefit) (Existing Awards) (No.2) Regulations 2010 and it is my understanding that in confirming your decision you should:
(a) have ensured I was entitled to the correct amount of ‘transitionally protected’ benefit at a rate whereby my converted Employment & Support Allowance award was equal to what I received before conversion and should have continued to be protected on a ‘mark time’ basis until the level of Employment & Support Allowance either caught up with my transitionally protected amount or until the 5th April 2020.
(b) As part of the conversion decision making and notification process you should also have checked any existing contributory award to see if I may qualify for an income based amount on the converted Employment & Support Allowance award as confirmed by the Upper Tribunal in [2015] UKUT 342 (AAC) where it was held [In considering Regulation 8 of Employment and Support Allowance (Transitional Provisions, Housing Benefit and Council Tax Benefit) (Existing Awards) (No.2) Regulations 2010]:
“Given the unified nature of ESA as described in paragraph 25 above, the determination by the Secretary of State of the amount of ESA to which a person would be entitled on conversion under regulation 8(1) in my judgment must encompass consideration of both the contributory amount and the income-related amount.”
I am therefore asking you to confirm that neither of the above omissions (a) or (b) occurred as a result of any official error on my claim. If official error has occurred and I have been underpaid in consequence of that error, please ensure that you pay me any amounts owing to as a matter of urgency and without unacceptable delay.
Please note that this request is an official one which you must treat by way of an anytime review or supersession request.
I must further point out that this request applies to a retrospective decision and therefore applies in cases where there may have been a subsequent successful appeal against any initial decision to refuse or otherwise restrict the Employment & Support Allowance award made. Likewise, the fact that I have since stopped claiming Employment & Support Allowance or taken up another claim to other benefits does not prevent me from making this request.
So that I can check the accuracy of your records please treat this letter as a Subject Access Request and supply me with copies of my pre – conversion awards and all claim details pertaining to my Employment & Support Allowance claim from the point of conversion of my claim.
Please also consider this as a complaint of potential maladministration on my claim and consider issuing me with an appropriate compensatory or special payment.
On a final point, please make me aware of the effect which this may have upon any other benefits such as Housing and or Council Tax Benefit paid at the point of conversion.
I look forward to hearing from you and trust that you will look in to and act on this request as a matter of urgency.
When Nawaal Akram was growing up in Qatar, she was bullied for the way she walked. She has muscular dystrophy which is a condition that gradually causes the muscles to weaken. She ended up using a wheelchair when she was 12 and had to leave school. Her difficult childhood led to depression, but eventually she found a way out of it by becoming a stand up comedian and a model. She tells Outlook’s Shaimaa Khalil her story.
The Disability News Service is reporting that a work and pensions committee inquiry into PIP and ESA assessments has received more evidence from the public than any other investigation ever held by a House of Commons select committee. Benefits and Work readers have played a large part in setting that record.
The inquiry was launched on 29 September 2017. Members of the public and professionals were invited to give their experiences of PIP and ESA assessments.
Usually such inquiries will attract 100 or so posts and a similar number of written responses. This time the final total was 2,828 posts and 450 written submissions.
18 days after the inquiry began, on 17 October, there had been just over 500 responses on the online forum. That was the date on which we encouraged our readers to take part.
In the next 24 days, until the forum closed on 10 November, the number of responses increased more than fivefold to a final total of 2,828 responses.
The number of posts was so unexpected that they have still not all been published.
The committee have said on their website:
“We have received an overwhelming response on this forum and we are really grateful to all of you who have posted. We moderate this forum so posts that breach discussion rules do not appear: please bear with us while we approve and post the comments you’ve sent us. Please be assured we are reading them all, and what you have told us will contribute to our inquiry.”
We have no doubt that Benefits and Work readers played a huge part in ensuring that the committee was given a very clear idea of the strength of feeling about PIP and ESA assessments.
The committee will start taking oral evidence next week, beginning with 5 PIP and ESA claimants and 4 advice workers.
The BBC has revealed that the DWP have made mistakes in calculating the employment and support allowance (ESA) of around 75,000 claimants. The total bill for putting things right, including extra staff time, could be as much as £500 million.
According to the BBC the errors began as far back as 2011 and involved claimants being forcibly moved from incapacity benefit (IB) to ESA. The errors continued through to the 2014-2015 benefit year.
It is not clear yet what the errors involve, the BBC say only that “assessors wrongly calculated the income of around 75,000 claimants.”
If the figures are correct it would suggest that, on average, the cost of putting things right for each claimant will be over £6,500.
The DWP are not denying the allegations.
They have admitted that they discovered the error last December and have so far contacted 1,000 affected claimants.
Accommable’s founders are friends of Same Difference. We wish them well.
A London firm sparked by two disabled people’s frustration at hotels’ inaccurate information on accessibility has been bought by Airbnb.
Accomable was founded by two friends with spinal muscular atrophy in 2015.
Former corporate lawyer Srin Madipalli came up with the idea after he quit his job to travel the world and found it difficult to find appropriate hotels.
“You’d turn up to places and the shower was tiny or there was a step to get in. It’s just really humiliating,” he says.
He persuaded childhood friend Martyn Sibley to join him, and together they created a website aimed at making it easier for disabled people to travel.
Like Airbnb, home owners are able to rent out rooms or entire properties via the website which only shows places which have step-free access and detailed information on accessibility adaptations.
‘We can do more’
Airbnb said Accomable would now be wound down over the next few months, with the listings incorporated into its own website,
It said that the firm’s founders and most of its seven-person staff would stay on and help Airbnb improve the accuracy of its accessibility listings.
“While we have rules that prohibit discrimination against people with disabilities and an Open Doors policy that helps ensure everyone can find a place to stay, it’s clear that we can do more to effectively serve people with disabilities,” Airbnb said.
The rental website said it was already working on new “accessibility needs” checklists for hosts.
Airbnb didn’t say how much it had paid for Accomable, but Mr Madipalli said the sale would enable it to finally meet customers’ demands.
He said up until now the website had not had enough cash or staff, meaning it could only fulfil about 5 to 10% of booking requests.
“We see the need every day, which is why we wanted to team up with a bigger player,” Mr Madipalli said.
And the other change, Mr Madipalli said was that he would now start using Airbnb himself.
Up until now the lack of wheelchair-accessible rentals had stopped him.
Well what can I say about today except that it was extremely busy and very cold. It appears that Ashton Under Lyne Jobcentre have upped their targeting of claimant techniques, most likely because they are now meeting the claimants that have been transferred over from nearby recently closed Jobcentre, Stalybridge. Far too many of the claimants that I have been speaking to have been telling me how awful Ashton Jobcentre is compared to what Stalybridge was like, I’ve even heard murmurings from the DWP staff that were transferred that they dislike it. Sadly this isnt a surprise is it.
The food parcels arrived with Gordon of which I was really thankful for. So many people are experiencing the well known delays in waiting for a Universal Credit claim to go through, and also far more people than I have noted in the past are failing their ESA medicals. When this…
The issue was raised by Lord Addington, who is president of the British Dyslexia Association.
He said it was unfair dyslexic students had to pay up to £600 to have their condition reassessed to claim the disabled students’ allowance at university.
Education Minister Lord Agnew agreed the system should be reviewed.
Disabled university students can claim an allowance to cover extra costs because of their illness such as specialist equipment or a non-medical helper.
Lord Addington asked what justification there was for dyslexic students to be reassessed to get help at university when they had already been diagnosed and received assistance at school.
For other disabilities and mental health conditions, a letter from a doctor is sufficient to prove eligibility.
However, for dyslexia and other specific learning difficulties, such as Dyspraxia and ADHD, a “diagnostic assessment” from a psychologist or suitably qualified specialist teacher is required.
Individuals must be reassessed for university if they were under 16 years old when they were last assessed.
‘Discriminated against’
According to the British Dyslexia Association, the cost of an assessment is £450 with a specialist teacher and £600 with an educational psychologist.
Lord Hunt said this meant students with dyslexia were “discriminated against”.
Lord Agnew said: “In a working paper in 2005, where the British Dyslexia Association was part of the consultation group, the view then was that progress into higher education represented a major transition and that more adult-based assessments should therefore be used.
“The view was that adult needs change and an initial diagnosis in childhood may not apply in adulthood.”
He also pointed out many universities now offered hardship funds to help cover the costs of assessments.
However, he agreed with Lord Addington that a review of the system was “overdue”.
The DWP is yet again showing its contempt for the law by issuing guidance aimed at ensuring that as few claimants as possible benefit from a court decision on safety and supervision.
Until then, the DWP had argued that a claimant could only score points for being unsafe if harm was likely to occur on more than 50% of the occasions on which they attempted an activity.
However, in March a panel of upper tribunal judges held that the decision maker should look at whether there is a real possibility that harm might occur and also at how great the harm might be. The greater the potential harm, the less likely it needs to be that it would happen on any specific occasion.
After a disgraceful 7 month delay during which the DWP ignored the ruling, new guidance was issued to health professionals and decision makers last week, ostensibly to comply with the court ruling.
The DWP also announced that they wold be looking back through cases decided since the ruling to decide if awards should be changed.
In reality, however, the DWP have interpreted the ruling in the narrowest possible way and given a very strong indication to decision makers that they expect very little change in the way cases are decided.
Looking for excuses It is clear that decision makers are being encouraged to trawl through all a claimant’s activities in an attempt to find any excuse for not awarding points. They are advised in new guidance:
“As always it is important to assess the consistency of the evidence. Key pieces of information could include whether they see specialists or have medical input which would support the frequency or severity of incident. It may also be helpful to consider if the claimant is able to undertake activities (such as cycling, swimming, working in a hazardous environment or taking young children out of the house alone), where the severity of harm could be grave.”
In fact, the question is not whether the claimant undertakes activities but whether they can do so in a manner unlikely to cause harm to the claimant or to another person, either during or after completion of the activity.
A claimant might have absolutely no choice but to take a small child to nursery or the doctors, for example, because they are a single parent or because their partner works. The fact that they have done so even repeatedly does not mean that it is safe. If, as the DWP say, the severity of harm could be grave then the likelihood of it happening need only be small for points to be awarded.
There is also the real possibility that a person working in a hazardous environment may be receiving supervision from colleagues to keep them safe. And it can reasonably be argued that anyone who goes swimming in a leisure centre will be being supervised by a trained lifeguard.
Nothing changes The new guidance to decision makers gives 5 examples of claimants who might be affected by the court ruling.
We’ve listed the five examples below and set out what effect the change in the law will have on awards, according to the DWP. You can download the guidance for full details.
Example 1 The claimant has severe learning disabilities and does not have an awareness of danger. The claimant already met descriptors based on safety before the court decision, so their points remain the same. No change of award.
Example 2 The claimant has diabetes with hypoglycaemic events which at their most severe can cause them to lose consciousness. None of the descriptors are met on safety grounds because they have warning symptoms. No change of award.
Example 3 The claimant has narcolepsy events which cause them to lose consciousness. The claimant has their condition under control due to changes in diet, exercise and medication. No change of award.
Example 4
The claimant has absence seizures, without warning, trigger or pattern, up to a few of times a day, which involve them losing focus and entering a trance like state. They do not fall and take reasonable precautions by using safe crossings when making journeys. No change of award.
Example 5 The claimant has epilepsy with tonic-clonic seizures. There are no warning symptoms or triggers and the incidents can happen at any time of the day. There are no warning symptoms or triggers and the incidents can happen at any time of the day. When the clamant has a seizure their body will become stiff and then their arms and legs will start twitching. They may drop any items they are holding and will fall from a standing position. Incidents happen once per week on average.
Points awarded on safety grounds for daily living:
Preparing food. 1 (c) 2 points
Washing and bathing. 4 (c) 2 points
The claimant is awarded 4 additional points for daily living. This does not meet the minimum of 8 points for an award.
Planning and following journeys. No points are awarded as the claimant can take precautions by using safe crossings.
The result is: No change of award.
A nod’s as good as a wink The DWP say they are expecting 10,000 claimants to benefit as a result of the change to the law, we think it should be a great many more. Yet, out of five examples given to decision makers, in not one case does the change in the law result in a change in award.
It would be a very obtuse decision maker indeed who did not get the message that the DWP do not expect them to make any real changes to their decision making as a result of the upper tribunal ruling.
Tribunals, we can only hope, will take a very different view.
You can download ADM memo 29/17: PIP, the meaning of ‘safely’, part 1 and ADM memo 30/17: PIP, the meaning of ‘safely’, part 2, decision makingfrom this page.
Julia and her dance group ‘MerseyGirls’ took to the stage on Britain’s Got Talent, in what they thought would be their last dance together. That’s because Julia has had scoliosis from birth, a condition that causes the spine to curve to the side.
On the show, the group received the Golden Buzzer form judge Alesha Dixon, before Simon Cowell declared that he would pay £175,000 for Julia’s specialist surgery in the US.
She’s now on the road to recovery, and told 5 live finding out he was going to step in and help was the happiest she’d ever been in her life.
Personal Independence Payment (PIP) is a new benefit that is gradually replacing Disability Living Allowance (DLA).
It was introduced in Northern Ireland last year.
PIP is harder to get than DLA because it places less importance on your diagnosis.
It focuses instead on how well you can function on a a day-to-day basis.
More than 125,000 people in Northern Ireland will have to be re-assessed to see if they qualify for the new benefit.
BBC Spotlight has obtained figures that shows that over 35% of applicants seeking to transfer from DLA to PIP have had their benefits disallowed on the basis of their initial assessment.
Many of these people have gone on to apply for what is called a mandatory reconsideration.
It is the first part of the appeals process and it is where you ask the department to look at your case again.
But the programme also discovered that only 20% of those who apply for a mandatory reconsideration will have their decision changed.
Capita is the private company who won the £65m contract to deliver PIP in Northern Ireland.
Simon Matchett from Bangor had been diagnosed with Multiple Sclerosis and was getting high-rate DLA that allowed him to get a Motability car.
Following his assessment he was awarded eight points, which was not enough to keep the car and he had to return it.
Mr Matchett said when he was reading his assessment he queried a number of things that were written in it.
“That didn’t happen, I didn’t actually say that – a lot of times it could come down to a he said, she said sort of thing,” he said.
“The title is personal independence payment and by taking away my car, they were taking away my ability to have a little bit of independence.”
Mr Matchett challenged the decision based on what he claimed were inaccuracies in his report.
He was later awarded the extra two points during the mandatory reconsideration stage.
If you are unsuccessful at the mandatory reconsideration stage, you can ask for an appeal hearing during which you will present your case to a legal expert and a disability expert.
Jylette Frey-Pullan, who has muscular dystrophy and uses an electric wheelchair, was also told that she no longer qualified for a Motability car.
She said the car was her lifeline as it was able to hold her electric wheelchair and her husband was able to drive her around in it.
Mrs Frey-Pullan said she was shocked when the initial decision letter arrived.
“I thought no, this must be some kind of mistake. They can’t be talking about me, there were a lot of inaccuracies,” she said.
At a mandatory reconsideration, her request for a car was again turned down.
Like many others in the same situation, Mrs Frey-Pullan is now waiting for a date for her appeal.
Shea Ross, a tribunal representative at the Citywide Tribunal Service, has said they have seen a huge increase in demand for their services.
“No one that we speak to is happy with the assessments, usually what they say is that either their words were twisted, or that some of the things in the assessment were just fabricated.”
So far just over 1,000 people have completed the full appeals process. More than one in three have been successful.
The main concern for claimants is that what they say during their assessments is not always being represented in the final report sent to the department.
Owen McCloskey, from the Law Centre NI, said “a serious issue that we feel we have identified is the auditing of reports and potentially changes being made to the report without clients being made aware of it”.
“We are looking for copies of each version of the audit report, so before and after it has been edited,” he said.
“It may have been edited multiple times.
“We are also looking for access to the actual audit document, so where the auditor has assessed the report, they have identified quality issues and they have made recommendations for change.
“It’s important we see that actual document.”
John Duffy, the president of the Appeals Tribunal, has written to Spotlight to say that tribunal members have “expressed concerns about the auditing practices” and that he had been in contact with the department about the issue.
He added that if all information is not made available at a tribunal, people can “ask for the decision to be set aside and reheard”.
When Spotlight asked the department about this, it said arrangements were now in place to facilitate earlier versions of the report being made available.
Civil servant Paul Gray was commissioned by the government to examine how the new PIP system was working in the rest of the UK.
With PIP still in its early stages in Northern Ireland, Mr Gray thinks the project should be reviewed before it gets much further.
“Since my reviews didn’t cover Northern Ireland then, yes, I think it would be a very good idea for somebody to take a look at that,” he said.
Justin Tomlinson MP, former minister for disabled people, said PIP is a “much, much better benefit than DLA”.
“Through the introduction of personal independence payments we are getting more people accessing the higher rate of benefits,” he said.
“The PIP process is recognised to be much more thorough, much more able to identify individual challenges, it means we’re spending £3bn a year more, so more money is going to some of the most vulnerable people in society but it’s not a completed project.”
Spotlight has also been told by the Information Commissioner that they have received a number of complaints about Capita and the department and are looking into the details.
Capita said Spotlight did not provide them with enough personal information about Mr Matchett or Mrs Frey-Pullan to be able to comment on their cases.
They added that they had a robust auditing process in place to ensure a high quality of assessment and said their staff are healthcare professionals who are trained and empathetic.
In a statement the Department for Communities said:
“Whilst it is still very early days for PIP in Northern Ireland, the recently published information shows that 29% of PIP recipients are getting the highest level of benefit compared to 15% of the working-age DLA customers prior to its introduction.”
My wife tried to kill herself in March. She took an overdose – while I was watching TV in the next room. Cue, in short succession: 30 minutes of heart-stopping panic, a nerve-jangling ambulance trip to A&E, an admission to a secure mental health unit, and a longer stay recovering in a crisis house.
Acute episodes such as this can be a recurring reality for someone with a longstanding mental health condition. From her battles with depression and struggles to get out of bed in the mornings, to anxiety so overpowering that a trip on a bus triggers a blind panic, for my wife (let’s call her Bea) life is a titanic battle to stay afloat. She experiences overwhelming feelings of worthlessness, guilt and impulsive urges to self-harm that can flood her mind and distort her thinking. Socialising with friends is hard, while work in the past year has been out of the question. But she’s also incredibly smart, funny, kind and brave.
Mental health is complex, but something simple triggered Bea’s overdose: a devastating letter from a “decision-maker” at the Department for Work and Pensions (DWP), informing her that her claim for personal independence payment, a disability benefit, had been unsuccessful. She’s not the first, and won’t be the last, to experience the dismissive treatment that people with severe mental health conditions can undergo when accessing the benefits system. And PIP, as the benefit is called, is one of the worst offenders.
PIP is supposed to offset some of the extra costs of a disability. Applicants are evaluated by health workers from the private firms Atos or Capita, who forward their assessments to a DWP decision-maker – who scores you on “daily living” and “mobility” (you need at least eight points for each to qualify). Currently nearly 3 million people claim some element of PIP, and my wife expected to be one of them. As did her benefits adviser, an NHS psychiatrist and a psychologist. So, armed with a dossier of supporting medical documentation, Bea applied. That was last November. I’ve seen glaciers move faster.
The thing about accompanying someone to a PIP assessment when you have your own disability is that you’re in danger of stealing their thunder. I have cystic fibrosis, I’m undergoing a lung transplant assessment, and I’m on oxygen 24/7. Bea has a hidden disease and most people aren’t trained to recognise the signs of her inner turmoil. Which means the receptionist is staring expectantly at me, oxygen cylinder strapped to my back, rather than my wife as we approach.
The good news about my wife’s assessor is that she didn’t ask Bea why her suicide attempts hadn’t been successful – a tactic that, shockingly, several applicants have claimed their own interviewers used. The bad news was that she displayed a frostiness to put the Snow Queen to shame. Bea’s acute distress during questioning – her body rigid, lips trembling, eyes welling up – was coldly met with impatience and irritation.
Imagine admitting to a series of deeply embarrassing difficulties that you battle with on a daily basis. How, for example, venturing outside on to a bustling high street feels akin to an artillery bombardment, a barrage to your senses. Or how, on some days, your body feels so leaden and heavy you can’t even raise yourself to sit up in bed. You’d hope that they would take those difficulties seriously.
The biggest shock for Bea wasn’t that her overall PIP application was rejected, but rather the manner of that rejection: being told that her claim had been unsuccessful because, in the assessor’s opinion, she was functioning perfectly normally at the assessment – thus scoring zero points, with the pages of supporting medical evidence overlooked.
This letter struck to the very core of Bea’s difficulties. “I’ve been rejected,” she said flatly. First came disbelief, then anger, and finally a tsunami of shame. She stumbled to the bathroom and locked herself in. She went catatonic, lying on the bathroom floor in a stupor, occasionally jerking back to reality with ragged gasps of panic.
Perhaps if they had read these medical notes they might have seen how, along with a severe and complex anxiety disorder, my wife’s mental health diagnosis features a particular vulnerability towards “rejection” and “abandonment”. But in their dash to get through her case and on to the next, they did not see it – or even worse, they ignored it.
There’s nothing quite like witnessing your wife tumble through a gaping chasm, to see that there’s something rotten at the heart of a welfare assessment system. From what we experienced, the wrong people are doing the wrong assessments with the wrong tools, using incorrect assumptions. And it left me reeling: how could this happen to my wife? I discovered that her experience is just the calamitous tip of a PIP-denying iceberg.While the DWP claims it doesn’t operate quotas to save money, figures released in April, covering just six months of 2016, showed an enormous expansion in claimants receiving zero points, up to 83,000. That’s only 10,000 fewer than in the previous 12 months.
This raises huge concerns about the assessment process – especially given that, when rejected by the DWP, 65% of applicants who appeal to a tribunal get the ruling reversed. A panel of welfare experts told the work and pensions select committee earlier this year that the whole process was “inherently flawed”, with medical evidence often ignored by officials during the initial assessment.
And it gets worse. New PIP guidelines were added this year, whereby mental health claimants whose mobility is limited due to “psychological distress” are now in effect barred from gaining the mobility component. “We want to make sure we get the money to the really disabled people who need it,” George Freeman, the director of Theresa May’s policy unit, said on the subject of anxiety on BBC radio in February. Bea may not be on oxygen 24/7, as I am, but her condition – and her symptoms of acute psychological distress – can be just as disabling. Acute anxiety that leads to dissociation is a physiological response: your body shuts down.
Many MPs have concerns too: the Tory MP Peter Bone declared in a Commons debate in February that “I am fed up with seeing [constituents] who clearly should have been awarded PIP.” Bea’s outraged welfare rights adviser recalled a previous PIP rejection by letter of another client, when it was crudely stated that as the individual wasn’t rocking backwards and forwards during the assessment, there was clearly nothing wrong.
After Bea’s discharge, I found myself constantly checking on her, terrified she had taken another overdose. But one weekend when I was away, visiting my sister, it happened again. A close friend came to her aid. There’s no time for fighting the benefits system when your wife is in a psychiatric unit. When Bea was finally home once again, and felt ready, we slogged through the DWP’s internal “mandatory reconsideration” appeal stage, with help from her adviser. Here the rejection rate is 80%. Bone himself has called these reviews a complete waste of time.
After several months Bea’s appeal was looked at, and rejected out of hand. I want to thank the decision-maker who saw fit to nudge her up from a derisory zero points to an even more offensive one point. At this point it might be stating the obvious that there seems to be a PIP agenda against people with mental health difficulties, and it’s harming the most vulnerable. The government may be trumpeting how mental health needs to be invested in, but its core approach is fatally flawed. Why, for instance, is there no consideration for how anxiety disorders can be just as crippling for mobility as those requiring a walking stick?
I’ve asked Bea what she thinks. She tells me about the other people she’s met at the crisis house. How most of them are repeat visitors with an array of serious mental health conditions, and many can’t work. They’re considered ill enough by the local authorities and A&E to require supported living, but too well by the DWP to be in receipt of PIP.
She believes a lot of things could make a difference. Better-trained PIP staff would help: Bea’s assessor didn’t believe her claims, as she didn’t understand Bea’s condition. And changing some of the underlying DWP guidelines about mental illness would make a big difference, such as rolling back the recent PIP changes on mental health and the mobility component.
And of course, writing to your MP with your own experiences and difficulties: Bea had written to hers, on another government benefit called ESA, and they intervened. Our PIP complaint letter is up next. She also wanted me to write this article, despite the unwelcome attention it might bring her. I think she is very courageous.
There is another thing claimants can do: persevere. Some time after Bea’s second emphatic DWP rejection, we filed a motion to go to tribunal. Tribunals are independently assessed. They carefully read through the supporting medical notes, and they don’t have political agendas: most people who go on to appeal here win. The DWP doesn’t like to be made to look like an idiot so, lo and behold, with the full weight of a tribunal imminent, they finally had a thorough look through Bea’s case. I spoke to a DWP official on the phone who finally acknowledged my wife’s difficulties and offered an avalanche of points and an award of the daily-living component if we withdrew the appeal. I expressed my frustration at an utterly broken process. But at last Bea had her offer of PIP. That’s the difference perseverance can make.
The true measure of any civilised society is in how compassionately it treats its most vulnerable members. Judged by how PIP claimants such as Bea are being treated, ours is failing.
The Conservatives today proved once again how unimportant the post of minister for disabled people is by removing yet another incumbent before they have been in post long enough to achieve anything.
Following the high profile resignation of Priti Patel as Secretary of State for International Development, Penny Mordaunt has now been moved into her post after less than 16 months as a DWP minister.
Few claimants will mourn the passing of Mordaunt, who most will feel did nothing to fight their corner. But the fact that the government sees no need to allow any degree of continuity in the post demonstrates that the rights of disabled people are not even on their radar.
The new minister for disabled people, Sarah Newton, thus becomes the seventh occupant of the post in as many years.
Previous ministers are:
12 May 2010 – 4 September 2012 Maria Miller
4 September 2012 – 7 October 2013 Esther McVey
7 October 2013 – 15 July 2014 Mike Penning
15 July 2014 – 8 May 2015 Mark Harper
8 May 2015 – 15 July 2016 Justin Tomlinson
14 July 2016 – 9 November 2017 Penny Mordaunt
Whether Sarah Newton will last any longer than her predecessors remains to be seen.
Imagine living with a condition that is only going to get worse but being told you are going to lose the support you rely on. That’s the reality facing thousands of people as a result of the move from the disability living allowance (DLA) to personal independence payments (Pip), and it’s having a disastrous impact on people with long-term conditions such as Parkinson’s.
I started as a welfare rights adviser in 1986 and, while the situation wasn’t ideal back then, it was far better than now.
I help people appeal against Pip decisions. This year I have worked on 34 appeals, with five more pending. I have won every one so far because the process is flawed. People are being presented with barriers from start to finish, and the assessors’ knowledge of conditions is simply not good enough.
Analysis by Parkinson’s UK shows it will cost the government £3m to reassess everyone with the condition for Pip. About £1.3m of this will be spent on people previously identified as having the highest need under the DLA. With a condition such as Parkinson’s they will not have improved so to put these people through another assessment is completely unnecessary.
The new system is not working. We know that 25% of people with Parkinson’s have lost some or all of their award under Pip. One of my clients went from the highest rate under DLA to nothing – he lost his money and his car because it was said he failed to attend an appointment. In reality, he had never received the letter asking him to go. His wife was looking at cheaper houses because they couldn’t afford to stay where they were. Eventually, after medical evidence was reviewed, he was awarded the highest rate again.
But it can take nine months for an appeal to be resolved – and while payments are backdated for successful appeals, you cannot give people back the sleepless nights or repair the damage the stress has caused to their personal relationships.
People are frightened; some stop eating, while others have to repeatedly go back to their GP for extra medication because of the stress.
Another of my clients was diagnosed with Parkinson’s as a teenager. It is advanced and he struggles to walk but has managed to stay in work thanks to a supportive employer. While his wife was on maternity leave, he was reassessed from DLA to Pip, his award was reduced and he lost his Motability car. He couldn’t afford to pay the bills; how could he get to work if he couldn’t use public transport? It took months to force the Department for Work and Pensions to reassess him using the evidence we had already provided.
It’s not unusual for clients to say they don’t want to live any more; the majority have to be encouraged to appeal against decisions. The process makes people depressed and feel like they are exaggerating their condition, which in turn increases the stigma of applying for benefits. I’ve helped people from all walks of life, including pilots and former doctors.
Parkinson’s UK set up a support service for benefit applications in 2015. We have gone from a team of two to a team of five, who could easily work day and night to meet the demand for the service. I shudder to think how many people don’t know where to go for support and just give up.
They say money can’t buy happiness, but happiness is demonstrated by the people we support when their Pip claim is successful. Actually, it’s not just the money; it’s the realisation that finally someone has acknowledged they are living with a condition that has affected every area of their life and they do need the support Pip is supposed to offer.
It is time for the government to get a grip on Pip.
Sue Hutchinson is a benefits and employment adviser at Parkinson’s UK, which has launched a petition calling on the government to end reassessments for Pip
The figures were provided to the BBC Northern Ireland Spotlight programme.
PIP is paid to people aged 16 to 64 to help with extra costs they face due to ill health or disability and is gradually replacing DLA.
Just over 21,000 reassessments had been completed by the end of July 2017.
Seven thousand, seven hundred and four claimants were ‘disallowed’ after the initial PIP decision.
That is higher than the disallowance rate in Great Britain which stands at 27%.
The Department for Communities said the process was still in “very early days” with the majority of around 125,000 claimants still to be reassessed.
It added that to date the “vast majority” of claimants assessed were those who had a fixed term award or who had reported a change in their care or mobility needs after the introduction of PIP.
‘Urgent review’
The charity Advice NI said they were “shocked” by the high disallowance rate when compared to GB
Chief Executive Bob Stronge said: “The Department for Communities may say that we are at the early stages of DLA reassessment, but we have to wonder is there a problem with how the PIP system is operating in NI.
“These are significant numbers and they do not bode well. We would ask that an urgent review be carried out with a view to correcting any anomalies in our system.
“Advisers are already seeing increased demands on advice services following the introduction of PIP, so much so that PIP enquiries now represent over half of all social security enquiries dealt with by the independent advice sector. “
Northern Ireland is the region of the UK which has consistently had the highest rate of DLA claims.
DLA was commonly based on self-assessment, whereas eligibility for PIP includes a test carried out by a company on behalf of the government.
The criteria for PIP are stricter than for DLA
Money is allocated according to a points system and eligibility is kept under regular review.
Seven months after it lost a personal independence payment (PIP) court case, the DWP has begun searching for claimants who should be getting a higher award. But many claimants, especially those who previously received no award, are likely to miss out.
Safety and supervision Back in March 2017 the DWP lost a vital upper tribunal case relating to safety and supervision.
Until then, the DWP had argued that a claimant could only score points for being unsafe if harm was likely to occur on more than 50% of the occasions on which they attempted an activity.
A claimant who has epilepsy which causes seizures once or twice a week, for example, may not attempt to cook unsupervised because they know that if they have a seizure they could come to serious harm.
However, the DWP had been refusing to award points to claimants with epilepsy on these grounds, unless the claimant could show that it is ‘more likely than not’ that they would have a seizure on any given occasion when they prepare food.
This is an almost impossibly harsh test, as is shown by the thousands of claimants with epilepsy who have had their payments removed entirely on being moved from DLA to PIP.
Upper tribunal However, in March a panel of upper tribunal judges held that the decision maker should look at whether there is a real possibility that harm might occur and also at how great the harm might be. The greater the potential harm, the less likely it needs to be that it would happen on any specific occasion.
For example, someone who is deaf may be unable to hear a smoke alarm if a fire starts when they are bathing.
The risk of a fire starting on any given occasion is very small, but also very real. And the harm that might occur if the claimant was caught in the bathroom during a fire is potentially fatal. So, the risk is small but the potential harm is very great. Therefore the claimant cannot carry out the activity of washing and bathing safely unless they have supervision.
The same logic also applies to people who have epileptic seizures and need someone to keep them safe if they do.
The panel also ruled that where a claimant is at risk all the time, even if they are just sitting in a chair doing nothing, then they may also be at risk when carrying out PIP activities that do not carry any additional likelihood of harm.
So, a claimant may not be at any additional risk of harm if they have a seizure when using the toilet or taking medication, for example. But, because they are at risk whatever they are doing, then we would argue that they still reasonably require supervision during these activities because they cannot do them safely without supervision.
Seven month delay Benefits and Work updated our PIP guide within a few weeks of the upper tribunal making their decision.
It has taken the DWP a shameful seven months to update their guidance to health professionals.
In a written statement last week, Penny Mordaunt, minister for disabled people, told the Commons:
“The updated guidance will reflect binding case law following an Upper Tribunal judgment handed down on 9th March 2017 on how DWP considers a claimant to be carrying out an activity safely and whether they need supervision to do so. This will increase entitlement for a number of both new and existing claimants, largely those with conditions such as epilepsy, which affect consciousness. The Department estimates approximately 10,000 claims will benefit by £70 – £90 per week in 2022/2023.”
Benefits and Work believes that the decision should benefit not just claimants with epilepsy, but also a wide range of other conditions such as learning difficulties, dementia, heart problems or mental health conditions.
So, someone at risk of serious self-harm or at risk of committing suicide might well qualify for the enhanced rate of the daily living component, if they need someone to supervise them to keep them safe.
Someone with learning difficulties which leads to a lack of awareness of danger may also qualify.
Whether the DWP will take the same view remains to be seen.
Backdating awards Mordaunt went on to say that the DWP will be looking at existing cases to identify claimants who have missed out as a result of their failure to apply the law correctly, in order to make a backdated award:
“In the case of existing claimants the Department for Work and Pensions will undertake an exercise to go through all existing cases and identify anyone who may be entitled to more. We will then write to those people affected and all payments will be backdated to the date of the change in case law.”
However, few claimants would trust the DWP to identify all those who should receive a higher award and it would definitely be worth getting advice if you believe your case should be looked at again, especially as the DWP seem to be focussing almost exclusively on claimants with epilepsy.
If you did not receive any award of PIP at all, even though you are likely to have qualified on safety grounds, it does not appear that the DWP intend to look at your case again. You may wish to consider making a fresh claim in these circumstances.
You can download the new PIP guidance from the PIP page in the members area, or from this link.
Figures released by the DWP show that almost one in five claimants who are forced to move from disability living allowance (DLA) to personal independence payment (PIP) get no award whatsoever.
The figures were given by minister for disabled people, Penny Mordaunt, in answer to a parliamentary question.
Mordaunt revealed that up to July 2017, 649,480 DLA claimants were reassessed for PIP. Of these, 125,680 (19%) received no award at all.
The figures do not include claimants who went on to successfully challenge this decision by way of mandatory reconsideration and appeal.
The figures also do not give any information about what proportion of DLA claimants were better-off, and what proportion worse-off, under PIP.
Thousands of disabled people will be given higher benefits after winning a legal victory over the Tory government.
Ministers have been forced to rewrite Personal Independence Payment (PIP) rules following the defeat at a top-level court.
People will now get £70 to £90 a week extra backdated to the day of the Upper Tribunal, which includes a High Court judge on its panel, in March.
The government believes around 10,000 people will benefit by 2022.
The shake-up axes rules which said people can carry out tasks unsupervised if it’s “unlikely” they’ll come to harm.
Epileptic people warned the old rule left them vulnerable, because even though attacks are unlikely, they’re catastrophic when they happen.
So judges ruled the Department for Work and Pensions (DWP) should base decisions on how serious harm is, not how likely.
Epilepsy Action chief executive Philip Lee said he was “delighted”, adding: “Many people with the condition could have a seizure at any time, often without warning.
“We know the current system is not working and is failing people with epilepsy. They are more likely to be refused PIP than those with any other health condition.”
Disabilities minister Penny Mordaunt said: “These updates will help us continue to ensure people with the highest costs associated with their disability or health condition are receiving the most support.”
But the minister has risked fury by describing the tribunal as a “binding” legal judgement and deciding to follow it.
When two other Upper Tribunals said 165,000 PIP claimants should get higher benefits, just nine months ago, she defied the judgement.
A DWP source said the cases were different, because the previous tribunals – which would have cost £3.7bn by 2022 – tried to widen PIP beyond its “original policy intent”.
“For this recent judgment, we accept the policy intent was less clear,” the source said.
But Phil Reynolds of Parkinson’s UK said: “This leaves disabled people in a really confused position about what the Government might do next and what the change means for them.
“Instead of chipping away at the issue, the Government needs to undertake a thorough review of the entire assessment to ensure people get the support they need first time.”
Laura Wetherly of the MS Society added: “Any change to make assessments more accurate is a positive move, but the PIP rules are still riddled with problems.
“Realistically, the whole system needs to be reviewed.”
Scope added the “flawed assessment process” should be reviewed.
Labour Shadow Work and Pensions Secretary Debbie Abrahams said: “While we welcome any increase in support for those who need PIP, this is a drop in the ocean of the funding that the courts have ruled should rightfully go to recipients.
“The government must immediately act on all of the court judgements on PIP.”
Other changes today ensure people will rack up ‘points’ to qualify for the benefit under both categories of “communicating verbally” and “engaging with others”, even if they appear similar.
This is expected to benefit some deaf people with sign language interpreters, for example.
The rules will also ensure people with mental health issues or “sensory difficulties” are taken into account better when judging if they should receive PIP.
Jo Campion, Deputy Director of the National Deaf Children’s Society said it was “an important step in the right direction” but it was “ridiculous” that deaf people still can’t apply for PIP online.
Sorry the blog is a bit late today, I’ve had an extremely busy week and I haven’t had time to think about much else other than Universal credit. You see the campaign doesn’t end when the demo finishes and I’ve published my blog. There’s so much more that goes into it, and anyone that runs a campaign will verify that.
I haven’t been sleeping well, which doesn’t help. I’ve been suffering from bouts of insomnia lately, but I can’t grumble because at least I’m lucky enough to have a bed to sleep in, thousands haven’t.
Anyway enough about me, I’m sure that you don’t want to hear my worries but I needed to vent a tad.
I arrived slightly early, and it was cold, really cold. It was a sharp reminder that winter is here and my heart goes out to everyone who is homeless or cannot afford gas and…
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Same Difference 