“I keep being kicked in the gutter": the cruelty of multiple cuts

Thousands of people with disabilities or long-term illness are now being affected by simultaneous cuts. As the welfare state undergoes unprecedented changes, the same people are being hit over and over again, says Frances Ryan.

It’s just gone 5am and Ray* is awake again. He emails me to tell me, on a laptop he’s been loaned by his local HIV charity. He’s been getting up in the night a lot over the past few weeks, thinking about money and feeling a thump in his head. His benefits, one after one, are disappearing and no one is listening.

“This past few weeks, months has made so feel so ill,” Ray writes. “The feelings in my head and body from not knowing how the hell I’m going to pay the bills or if I’m going to lose my home, the little home I love and feel safe in… Yet feeling like scum in the way this Government has and is treating me.”

Ray has mental health problems and, in addition to having HIV, is diabetic and insulin dependent. He’s unable to work and, at 47, pieces together a small income from disability benefits and help with his rent and council tax.

As the Government’s shrinking of the welfare budget kicks in this month, he’s watching as each part of that help is being withdrawn.

“I feel as I am being hit from all sides,” Ray says when we speak again. “Yet [there’s] nothing I can do.”

He is one of thousands of people with disabilities or long term sickness who, from this month, are being affected by multiple, simultaneous cuts. Disabled people often rely on a variety of different benefits and services and, as the welfare state undergoes its fundamental change, are as such being hit again and again and again.

The "bedroom tax" means Ray has now lost 14 per cent of his housing benefit for living in his two bed house. At the same time, cuts in support for council tax mean that poverty no longer exempts him from having to pay. He’s already lost nearly £50 per month.

“That’s one hell of a percentage out of my meagre monthly income,” he tells me. “I don’t know how I’m going to manage it.”

Ray is already in debt after his Incapacity Benefit, the outgoing benefit for people who cannot work due to a health condition or disability, was stopped last September and he was rejected for its replacement (Employment and Support Allowance). He tells me a social worker spent twenty minutes on his application for the new benefit and after being assessed by Atos, he was found fit for work. His benefits were suspended entirely for six weeks and it’s against this back-drop of debt and worry that the other cuts hit.

Ray’s depression is worsening. His vacuum cleaner found itself smashed in anger and a blood vessel in his eye has burst; diagnosed by his diabetic nurse as being due to the stress. 

It doesn’t seem surprising. Push an already vulnerable person and effect would be expected. The Government, either ignorant or unfeeling, is choosing to ignore it.  

”Subjecting individuals to frequent reassessments and the financial hardship experienced as a result of losing benefits will cause the mental and physical health of many people to deteriorate,” Mind, the leading mental health charity, stresses to me.

Ray tells me that right now he feels as if he’s at his “wits end”.

As the bedroom tax and council tax charges begin, he’s going through the process of appealing his ESA rejection. He’s been told that, due to the backlog in cases, it will take up to a year to get a tribunal date. In the meantime, he must live on the appeal rate of ESA – 30 per cent less than he would otherwise receive.

“I’ve had to use my credit card, overdraft…” he says. “[I] even had to ask dad for help as I was unable to afford to feed myself properly.”

He’s currently trying to get by on his Disability Living Allowance (DLA) but, as its replacement, Personal Independence Payments (PIP), begins to be rolled out, does so with the awareness that this will be the next benefit at risk.

“I’ve had enough of it all,” he says. “It’s as if I keep being kicked in the gutter.”

Despite the Government failing to assess the cumulative impact of the changes, the cuts aren’t coming in isolation, after all. Nor are they coming for comfortable people in secure conditions; those who won’t miss a tenner a week or have the bodies and minds that mean, if needed, they can do a few more hours at work. By the nature of need, the people relying on disability, unemployment, or rent support are the people who were already struggling before each string of their safety net was pulled away.

People like Alex Baker who, due to his chronic neurological condition, can’t cook for himself. His £20 a week DLA isn’t enough to purchase care so he lives on pre-cooked meals that don’t need heating up. It means he buys multiple lots of pasta salad and a takeaway for heat a couple of times a week.  

“This is a miserable way to live at any time,” he says. “But in winter not having a hot meal means that you’re cold all the time.”

He tells me, like Ray, he’s sure that even this money will soon go. The Government’s own figures predict the change to PIP will see at least 500,000 lose their support. Alex speaks as if he’s already planning for it.

“[I’ll] live on sandwiches on the days I am well enough to make them,” he says. “Or biscuits, as I did before my DLA was awarded.”

His fear is increased by the fact that the last time he re-applied for DLA he was rejected. He lost his benefit for seven months and had to go to a tribunal, where it was re-instated. He tells me he still remembers the welfare support officer who’d been assigned to help him explaining she’d done nothing with his case for six months because “most people pull out, so we wait.”

“I received monthly letters from the Department of Work and Pensions asking if I would like to withdraw my appeal in the run up to the tribunal,” he adds.

It’s experiences like these that frame the welfare changes for many people like Alex; bureaucratic failure, disregard, and resulting months of having to skip meals. These experiences do not make a person feel they will be taken care of or that the system going through the rapid reform is one on which you can rely.

On top of the removal of DLA, Alex will have to be tested for ESA when his contributions based Incapacity Benefit is stopped. He tells me he’s awaiting the assessment with “terror” and expects the same will happen with his PIP claim and ESA migration as it did with his DLA.

“Only now I won't have any assistance because [my council] have closed their advice service and sacked their welfare rights officers,” he adds.

Alex’s council tax has now increased from £36 to £111 per year. His disability that means he can’t work isn’t going to heal itself but the bills are increasing.

He’s being handed extra charges to keep his home whilst facing losing the support that helps him leave it.

It echoes Janet Mandeville’s story; another apparently faceless sick or disabled person being hit by simultaneous cuts and another person who has reached the point where they are grateful if anyone even listens. The 50 year old has multiple health problems and tells me she’s been housebound for the past six months as she waits to be assessed for a wheelchair. All four of her benefits are being affected by the welfare cuts.   

Some have already come into effect for her, and others like DLA, are waiting around the corner.

Like many on the low rate of DLA, she tells me she’s sure the changes to eligibility under PIP will see her lose her support.

Janet’s doubly incontinent and the benefit buys some health and dignity.

“I use DLA mainly on complan, a food supplement,” she says. “And extra toiletries, wash powder and electric…”

From this month she’s losing over £13 rent a week due to the bedroom tax as well as £26 a month council tax. She tells me she’s already seeing the effect and is struggling with her finances.

“[I] had to pay less than the arranged instalment of water rates and TV licence and reduce food shopping to raise the bedroom tax and council tax,” she says. “It just isn't possible to take £20 a week from someone who is only just managing in the first place…The Government is taxing us out of our homes.” 

The sentiment is particularly painful for Helen Aveling. Twelve years ago the now 44 year old, who has cerebral palsy, was living in a residential home. She lived there for seventeen years before moving to Chatham, Kent to “escape residential life” and live independently.

She’s been doing that with the help of the Independent Living Fund (ILF); the benefit that assists around 19,000 people with severe disabilities to live in their own home. The Government has scrapped ILF from 2015 and devolved current user’s care to local authorities – and, even more worryingly, have not ring-fenced the money. The fund is the difference between independence and existence for Helen and the uncertainty around the changes come at the same time as she faces cuts and change elsewhere.

In addition to ILF, she also relies on Disability Living Allowance and tells me she doesn’t know what will happen to her when it’s removed.

“I’m scared witless,” she says. “I’m terrified.”

One of her biggest fears is not retaining her enhanced mobility points under PIP and her accessible car being taken away. It is impossible for her to make the repayments on her own.  

Meanwhile, though she has never been charged any council tax before, she is now being told to pay £25 for the next nine months. She starts with £28.29 this month, she says. She expects to be charged bedroom tax as well.

“I have the sense that all I had hoped for when I moved out of [residential care] is being eroded, little bit by little bit,” she tells me. “I'm angry, terrified and helpless all at the same time.”

Ray tries not to be angry, he says, but that it’s difficult when you feel discriminated against and sick with worry.

“I hope all this crying, pain and fear ends damn soon because I can’t take very much more,” he adds. “I just don’t know where to turn.” 

*Some names have been changed

A disabled parking space. Photograph: Getty Images

Frances Ryan is a journalist and political researcher. She writes regularly for the Guardian, New Statesman, and others on disability, feminism, and most areas of equality you throw at her. She has a doctorate in inequality in education. Her website is here.

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British mental health is in crisis

The headlines about "parity of esteem" between mental and physical health remain just that, warns Benedict Cooper. 

I don’t need to look very far to find the little black marks on this government’s mental health record. Just down the road, in fact. A short bus journey away from my flat in Nottingham is the Queens Medical Centre, once the largest hospital in Europe, now an embattled giant.

Not only has the QMC’s formerly world-renowned dermatology service been reduced to a nub since private provider Circle took over – but that’s for another day – it has lost two whole mental health wards in the past year. Add this to the closure of two more wards on the other side of town at the City Hospital, the closure of the Enright Close rehabilitation centre in Newark, plus two more centres proposed for closure in the imminent future, and you’re left with a city already with half as many inpatient mental health beds as it had a year ago and some very concerned citizens.

Not that Nottingham is alone - anything but. Over 2,100 mental health beds had been closed in England between April 2011 and last summer. Everywhere you go there are wards being shuttered; patients are being forced to travel hundreds of miles to get treatment in wards often well over-capacity, incidents of violence against mental health workers is increasing, police officers are becoming de facto frontline mental health crisis teams, and cuts to community services’ budgets are piling the pressure on sufferers and staff alike.

It’s particularly twisted when you think back to solemn promises from on high to work towards “parity of esteem” for mental health – i.e. that it should be held in equal regard as, say, cancer in terms of seriousness and resources. But that’s becoming one of those useful hollow axioms somehow totally disconnected from reality.

NHS England boss Simon Stevens hails the plan of “injecting purchasing power into mental health services to support the move to parity of esteem”; Jeremy Hunt believes “nothing less than true parity of esteem must be our goal”; and in the House of Commons nearly 18 months ago David Cameron went as far as to say “In terms of whether mental health should have parity of esteem with other forms of health care, yes it should, and we have legislated to make that the case”. 

Odd then, that the president of the British Association of Counselling & Psychotherapy (BACP), Dr Michael Shooter, unveiling a major report, “Psychological therapies and parity of esteem: from commitment to reality” nine months later, should say that the gulf between mental and physical health treatment “must be urgently addressed”.  Could there be some disparity at work, between medical reality and government healthtalk?

One of the rhetorical justifications for closures is the fact that surveys show patients preferring to be treated at home, and that with proper early intervention pressure can be reduced on hospital beds. But with overall bed occupancy rates at their highest ever level and the average occupancy in acute admissions wards at 104 per cent - the RCP’s recommended rate is 85 per cent - somehow these ideas don’t seem as important as straight funding and capacity arguments.

Not to say the home-treatment, early-intervention arguments aren’t valid. Integrated community and hospital care has long been the goal, not least in mental health with its multifarious fragments. Indeed, former senior policy advisor at the Department of Health and founder of the Centre for Applied Research and Evaluation International Foundation (Careif) Dr Albert Persaud tells me as early as 2000 there were policies in place for bringing together the various crisis, home, hospital and community services, but much of that work is now unravelling.

“We were on the right path,” he says. “These are people with complex problems who need complex treatment and there were policies for what this should look like. We were creating a movement in mental health which was going to become as powerful as in cancer. We should be building on that now, not looking at what’s been cut”.

But looking at cuts is an unavoidable fact of life in 2015. After a peak of funding for Child and Adolescent Mental Health Service (CAMHS) in 2010, spending fell in real terms by £50 million in the first three years of the Coalition. And in July this year ITV News and children’s mental health charity YoungMinds revealed a total funding cut of £85 million from trusts’ and local authorities’ mental health budgets for children and teenagers since 2010 - a drop of £35 million last year alone. Is it just me, or given all this, and with 75 per cent of the trusts surveyed revealing they had frozen or cut their mental health budgets between 2013-14 and 2014-15, does Stevens’ talk of purchasing “power” sound like a bit of a sick joke?

Not least when you look at figures uncovered by Labour over the weekend, which show the trend is continuing in all areas of mental health. Responses from 130 CCGs revealed a fall in the average proportion of total budgets allocated to mental health, from 11 per cent last year to 10 per cent in 2015/16. Which might not sound a lot in austerity era Britain, but Dr Persaud says this is a major blow after five years of squeezed budgets. “A change of 1 per cent in mental health is big money,” he says. “We’re into the realms of having less staff and having whole services removed. The more you cut and the longer you cut for, the impact is that it will cost more to reinstate these services”.

Mohsin Khan, trainee psychiatrist and founding member of pressure group NHS Survival, says the disparity in funding is now of critical importance. He says: “As a psychiatrist, I've seen the pressures we face, for instance bed pressures or longer waits for children to be seen in clinic. 92 per cent of people with physical health problems receive the care they need - compared to only 36 per cent of those with mental health problems. Yet there are more people with mental health problems than with heart problems”.

The funding picture in NHS trusts is alarming enough. But it sits in yet a wider context: the drastic belt-tightening local authorities and by extension, community mental health services have endured and will continue to endure. And this certainly cannot be ignored: in its interim report this July, the Commission on acute adult psychiatric care in England cited cuts to community services and discharge delays as the number one debilitating factor in finding beds for mental health patients.

And last but not least, there’s the role of the DWP. First there’s what the Wellcome Trust describes as “humiliating and pointless” - and I’ll add, draconian - psychological conditioning on jobseekers, championed by Iain Duncan Smith, which Wellcome Trusts says far from helping people back to work in fact perpetuate “notions of psychological failure”. Not only have vulnerable people been humiliated into proving their mental health conditions in order to draw benefits, figures released earlier in the year, featured in a Radio 4 File on Four special, show that in the first quarter of 2014 out of 15,955 people sanctioned by the DWP, 9,851 had mental health problems – more than 100 a day. And the mental distress attached to the latest proposals - for a woman who has been raped to then potentially have to prove it at a Jobcentre - is almost too sinister to contemplate.

Precarious times to be mentally ill. I found a post on care feedback site Patient Opinion when I was researching this article, by the daughter of a man being moved on from a Mental Health Services for Older People (MHSOP) centre set for closure, who had no idea what was happening next. Under the ‘Initial feelings’ section she had clicked ‘angry, anxious, disappointed, isolated, let down and worried’. The usual reasons were given for the confusion. “Patients and carers tell us that they would prefer to stay at home rather than come into hospital”, the responder said at one point. After four months of this it fizzled out and the daughter, presumably, gave up. But her final post said it all.

“There is no future for my dad just a slow decline before our eyes. We are without doubt powerless – there is no closure just grief”.

Benedict Cooper is a freelance journalist who covers medical politics and the NHS. He tweets @Ben_JS_Cooper.