…as far as the political class is concerned.

Having spent some of Easter reading renowned “christian” (I do mean that ironically) Iain Duncan Smith on benefit cuts and the gruesome George Osborne bragging about his winkling out of the “undeserving poor,” I post below a discussion with yet another person who deserves social security and isn’t getting it. The man in this story is called Clifford Poole.

I’m posting Clifford’s story because I have it and plenty like it and so I might as well. I’m also posting his story – as I post them all – to make again the point that when it comes down to it, there is no such group as the “deserving poor” as far as this government (and the Labour “opposition”) is concerned. Osborne and the Telegraph and all the rest can claim that coalition social security “reforms” as they are “merely” aim to distinguish between the “workshy” and the “deserving” as the Telegraph so charmingly put it this weekend. But that isn’t true. The truth is that in the eyes of modern government, everyone (everyone outside of the financial sector, that is) is undeserving of state support. Everyone. I laugh, if thinly, when I read that “deserving” tag these days. Deserving? Ha. HA HA. I’m laughing at that. Nobody’s considered deserving out here. As I see it – and I see a lot of it – if you need or use public services, you’re considered undeserving. And that’s it.

These days, I’m talking to people whose physical impairments are so extensive that they can’t move, or even feed themselves unaided – but they’re still facing the sort of service cuts that will make their lives impossible. Actually, it’ll be worse than that. It is absolutely fair to say that the health, and probably the lives, of people who currently receive, for example, Independent Living Fund money for extra care hours will be compromised if they lose that funding. There can be no other outcome if, as recipient Mary Laver says in this video, care funding cuts mean you’re left sitting round in your own urine and pressure sores for hours each day.

I mean nothing patronising when I say that I’ve wondered why these people are even in frame for cuts. The answer is that they’re in frame because everyone is. There will be no exceptions. Social security will not be “reformed” for modern government until it is entirely obliterated and/or passed to the private sector for a final bleeding (if you want to experience an example of that in real time, just follow Barnet bloggers like Mrs Angry – she’s writing very regular and detailed updates on the unfolding disaster that is Barnet council’s already-catastrophic and costly attempt to outsource all services. Alternatively, just google Privatisation and NHS).

“This is ridiculous. How much plainer could it be? This government are out to destroy us all,” observed Steven Sumpter on twitter last night. I don’t often lift tweets for stories: I think lifting tweets is lazy journalism. But that one was on the money. Government is targeting people who absolutely should not be targeted – people who will pay a very high price for it. I really don’t give a damn who thinks that is an unacceptably emotive statement. I’m seeing enough of all of this with my own eyes to know the facts. And anyone, just by the way, who thinks that this government will stop its plundering at the homes and bank accounts of people on benefits is dreaming. There are days when Cyprus doesn’t seem very far away.

So we go to Clifford Poole. Clifford is a Liverpool man who has greatly inconvenienced the welfare-slashing political class by developing an industrial injury. He is also a victim – as many now are – of the government’s April 2012 decision to time-limit eligibility for contributions-based employment and support allowance to a year.

We’ll get to that. Let’s start at the beginning of this story – it’ll give you an idea of the perverse manner in which these things are sneaking up on people now. It’ll give you an idea of the way things unfold when people lose their jobs. Clifford was a painter and worker in the shipbuilding industry for years. ”I’ve always worked on the industrial side, which is a lot heavier with shotblasting and paintspraying.” He used needleguns and chipping hammers and as he says – “they vibrate like hell. It’s a handheld gun. All the vibrations come through your hands and arms.” The upshot of this for Clifford has been terrible pain in his hands and arms, which he manages now, to a degree, with sleeping pills and morphine. The symptoms range from “numbness to tingling to shooting pains.”

So. Clifford “first went sick from work in February 2010, with the pain in my hands.” The effect on his income was immediate. “Probably before that I was earning between £480 and £520 a week after tax. Obviously, Beccy (his wife) is working, so we had a reasonable life – nearly two grand coming in after net. When I come onto the sick in February, I’ve gone from £480 a week down to £67 a week on statutory sick pay. By the time September come, when my statutory was due to run out, you’ve lost a lot of money. You’re losing over £400 a week, which put more pressure on Beccy.”

When his statutory sick pay ran out in September 2010, Clifford contacted his local benefits office.

Clifford says that the benefits office told him not to apply for employment and support allowance until January 2011, because he didn’t have enough recent national insurance contributions for a claim (he’d been laid off in 2008).

“So I said – “look. What do I do now? I’ve got no statutory sick pay from work.” The benefits officer said “your wife works (Beccy was working part-time in the betting shop then – that’s the job she still has). I said “what’s that got to do with anything?” I said – “look, I’ve worked all my life and now I’m injured.” She said – “well, you’re just going to have to try and get crisis loans.”

That meant, Beccy says, that they had to try and survive from September to January on “my wages, which weren’t very much, because I was only doing about 24 hours a week. We were still paying all the rent.”

After an Atos face-to-face assessment in January 2011, Clifford was awarded ESA – but “it all fell apart in December that year. “I went for another assessment. I’d passed all my others – but this time, I got zero points. As soon as I walked in the room, I knew. It was just 40 minutes of degradation and humiliation. They know that if you turn around and say anything, they’ll just remove your money and everything. They know they’ve got the power and they know they’ve got the government backing them, so that was that. Everything started falling apart.”

Clifford appealed the fit-to-work decision and got an ESA payment – at the reduced rate people get when they’re appealing that Atos decision – while he waited for his appeal to be heard. He won his appeal and was placed in the ESA work related activity group. “That was fine, because they knew I was trying to get back to work at that stage.”

Then it all fell apart again – and this time, for the duration. Clifford got a back-payment which covered the months when he received the reduced-rate ESA – and then the payments suddenly stopped. He quickly found out that he’d fallen foul of the government’s new 365-days time-limit rule on contributions-based ESA.

“I rung them up and said “can you tell me why me ESA hasn’t gone in?” They said “you’re not entitled to any.” I said – “but I’ve won my appeal.” They said – “yes, but you’re on contributions-based ESA and the law changed in April. You only get it for a year.” Unfortunately for Clifford, his year was up.

The upshot is that he now has no income. “Now, everything is coming out of Beccy’s wage. The more they take off me, the more Beccy has to work and Beccy is not on a high income job. The situation is that in the last three years, I’ve gone from earning about £500 a week down to £67 pounds down to nothing. Beccy will get a bus at 6.30am in the morning and she doesn’t come in until 11pm at night. She does hours and hours of overtime.”

Beccy also does a lot of work at home: “because of his hands, I cook all the meals. I’ve got to do everything before I go to work. I had to buy a travel kettle for when he’s home on his own, because he can’t lift our kettle. The only thing we’ve had is an adapted shower fitted. That’s been an absolute blessing. That was due to our GP.” And just to add to that – this month, it seems Clifford will lose the small amount he received in Disability Living Allowance. He was entitled to the low-rate DLA care component, but his welfare rights advisor has told him that rate is at risk when DLA is replaced with the personal independence payment. So that’ll be it for Clifford. “That’s my repayment for working,” he says, wryly.

Indeed. There are, as I say, no “deserving poor.” Doesn’t matter if you’ve busted your hands and arms at work, or have a long history of severe mental illness, or have serious physical impairments which mean you need round-the-clock care. Doesn’t matter if you just happen to have a tiny spare room in your council flat, or if your grownup children have learning difficulties and need support services, or if you require medical help from time to time (as we all probably will). As I say – if you use public services, you’re undeserving. That’s the end of the story for you.

“I think that it has to do with how we judge what is valuable in terms of being a nice, Tory work product,” writer Penny Pepper (who happens also to be fighting for the Independent Living Fund which pays for the 24-7 care she needs to live and work independently) told me when we talked about this in January. “Do we deserve to get out of bed? Do we have to take part in some crazy ideologically-driven competition [for resources]? It’s sickening.” It certainly is.

It is particularly sickening in light of the fact that there’s no political opposition putting any sort of case for social security. There really isn’t. There really, really isn’t. This year already, I have sat and tried not to hurl as I’ve listened to Ealing councillors blither on about “having heavy hearts” as they have cut much-loved services for people with learning difficulties. I heard the same sort of crap at this year’s budget-cutting meeting in Birmingham as that council wiped some £120m from services for the next year. I stood outside Liverpool town hall with irate locals in March as councillors there did a similar thing. I attended bedroom tax meetings in Liverpool where people asked point-blank why councillors weren’t supporting them and “where are the councillors? Why aren’t they here?” (the answer was that councillors were at the town hall making massive budget cuts, with heavy hearts. And in front of more cameras, I imagine). I sent a bunch of questions to Emily Thornberry asking why she and Labour weren’t being more helpful to people like Mary Laver and Penny Pepper in their fight to keep the Independent Living Fund. That was about two months ago. I haven’t heard anything back. Now we seem to have Ed Miliband making vague statements via Liberal Conspiracy about voting against the bedroom tax – but I’m not even sure what he means by that. Does he mean he wants every Labour council meeting to propose “that the bedroom tax is shit” and then have everyone shout Aye? Is he telling Labour councils to all refuse to evict people who fall into arrears? Is he just talking any old crap? Pity we’ve run out of time to find out.

Update Monday 15 April 2013:

Had a call from Sean and Maggie this morning. They’d just had a call from Wellingborough homes, their housing association. The HA officer asked them why they hadn’t paid the outstanding bedroom tax amount (for them, the tax is £11.21 a week). Apparently, that HA is trying to get people to pay up front to “prevent them from getting into arrears.” I’ve spoken with Wellingborough HA to ask about this and also asked them to tell me exactly getting into arrears at that HA will mean for people. Will it mean eviction? I’ll post their response when/if someone calls me back (they said they’d get back to me by the end of today, but haven’t yet).

Update Friday 19 April:

Have spoken to Wellingborough Homes about this. They did make calls to people on Monday morning to remind them about the bedroom tax. They say they’ve identified about 700 people who are liable for the bedroom tax and that people will have to pay it, as there are simply not enough flats for people to downsize to (they said that they were building more and increasing the borough’s stock of flats to “address this issue” to an extent. In the meantime, though, people have to pay. They do take legal action to recover outstanding rent and that can mean eviction, but WH said its aim was to try get people to work with advisors at their local free financial advice service before that point was reached. That means people sitting down with a money advisor, looking at their weekly costs and so on and trying to find points where household savings might be made. WH said eviction on arrears is ultimately a matter for the courts: the HA was putting its energies into preventing things going that far.

Time will tell how that pans out. The tax is not removed from the equation, though, which is the bottom line. It is added to the equation. Anyway – that was the HA’s response on procedure. What we need, though, is a political response, so I’ve asked to talk to board members. We need to know whether the board considered reclassification, or if it would write off bedroom tax arrears if people simply can’t pay and not evict if it comes to it. You can see from this heavy-handed proceedings letter (sent by a different HA to a tenant in another part of the country) the sort of court costs that people start facing even when they’re in arrears for a very modest amount of money. It seems unlikely that people can afford those costs when they’re already in rent arrears.

What a mess this is already. We’re just two weeks into this appalling tax and people are already getting calls about parting with money that they don’t have and/or opening their lives to money advisors to try and find items that they might cut from their personal budgets. The conversations I’ve had with officers here and there suggest that some of them are stressed by this and housing benefit changes generally: they’re sort of doing a quasi-bailiff job already. None of that matters, of course, to people who are getting calls first thing on a Monday from people who tell them that they’ll have to pay up and that it’s better to pay up sooner rather than later if you don’t want to risk your home. Sean and Maggie told me that they’ll try and pay the tax, but they’re not going to find it too easy, as you’ll understand when you read their story below.

MPs, councils and housing associations need to answer to this. They’re enabling this shambles and you can see already how it’s unfolding on the ground.

————

How this story began:

This post is a discussion and transcript of an interview with Sean and Maggie, a couple in Northamptonshire. I’ve known Sean and Maggie for some months now and have visited them at their house. They live in a small, two-bedroom housing association flat in a block and have been there for 11 years. They’ve been a couple since 1997. They met in a residential, independent-living home.

Sean has Asperger’s syndrome and Maggie has schizophrenia. Unfortunately, the political class does not give a stuff about either. Sean and Maggie are being attacked on all fronts. They say that local support services have gone, or are wildly oversubscribed and too stretched to help them. Atos calls Sean in to face-to-face assessments for employment support allowance that he can barely cope with, they’re liable for the bedroom tax, because they have a small second room in their flat, they’ve been issued with a new council tax demand, because their council tax benefit will be cut from April, and they’re worried about further cuts when the personal independence payment replaces disability living allowance.

It is not unusual for Sean to send me emails which say: “I can’t cope with any more. Why don’t they give us a lethal injection to end our fucking misery?” I imagine the answer to that question is “government here prefers slower methods.”

And that is what we have: “scrounger” rhetoric and vicious targeting dressed up as the miracle cure. We all know how this will end for those exposed to it. It can’t be long before government begins to insinuate that mental health illnesses like schizophrenia are best addressed by throwing people out of housing and off benefits – that all someone with Asperger’s or schizophrenia needs to do is pull themselves together, find a job and get out for a bit of fresh air. Sorted. The scrounger subtext pretty much writes itself from there: “why waste money on drug therapies, psychiatry and decent, stable housing when all people with serious mental health and cognitive problems need is a kick in the pants?” That’s certainly the reading Sean and Maggie take from the tax and assessment demands that pour in these days with their post. They did not, just by the way, cause the financial crisis. They’re paying for it, which is different.

In December last year, I accompanied Sean to his Atos face-to-face assessment for ESA. He found the whole assessment process worrying and threatening and he wasn’t able to get much help through it. We spoke at length in the months leading up to the assessment. He was obviously frightened and unable to settle. He sent me a lot of emails and we spoke on the phone many times. He wanted Atos to record his assessment, which Atos did in the end, but it took several months of cancellations and reschedulings to arrange that.

At that time, too, he’d been disturbed by the Newtown shootings in Connecticut (he is British, but grew up in America, in the area where the shootings took place) and he had tried to find someone to talk to about it. “I did try to get help from the healthcare around here in regards to the shootings,” he emailed to say, “but they responded that “everyone is upset” and unless I said I was suicidal, they would do nothing.” He did say that the Samaritans were helpful and talked with him.

After his Atos assessment in December, Sean was placed into the ESA support group, which gave him some breathing space – although not for long. And that’s the point. There isn’t much breathing space for people in Sean and Maggie’s situation now and soon there won’t be any at all. Every day, the government hurls in another grenade – another letter, another call to assessment, another demand for money that people haven’t got (no matter how the government screams that they must find it) and another threat to another service or benefit. I know, and Sean and Maggie know, and we all know, that those letters and demands will keep coming until everything has gone.

There is nowhere for Sean and Maggie to go: no Labour party to appeal to, no “name” politician to advocate with any sort of passion on their behalf and/or behalf of the notion of universal social security, no political commitment to the notion of the right to housing or incomes for people who aren’t born to money. It’s all very well for MPs to speak ad infinitum about “acknowledging” mental health problems, but that means nothing if they refuse to salute the universal social security that’d make improvements possible. The financial sector sails on with its bailout money, tax breaks, brass neck and bonuses while people in Sean and Maggie’s position are pursued and pursued and will be trampled in that rush: their tiny ESA incomes, their housing, the council tax breaks all hoovered by the Beast. There’s no work for them and no suggestion that work, or any source of income, will be found. They’ll be hounded and screamed at as scroungers until nobody cares how they end. They’re already targeted by kids and neighbours for looking and acting “differently.”

Last week, Sean got in touch to say that he and Maggie had “received the notice of the bedroom tax and they are giving us 30 days to appeal the spare room. I do very much plan to appeal. Our room is not “spare.” It is my study/hobby room and for storage. No one sleeps there. They want to withhold £14 a week and I just hope there is a form letter, or if someone could write a very [sic] letter, so we have something to stand against this unjust charge. We also had a council tax notice demanding £77.88 when before it was covered with benefit. We need legal advice and a really strong fightback with appeals and legal challenge. They would have us on the street or in our grave at this rate. It is ruining our relationship and our very existence with this irrational inhuman attack on our lives.” Sean says he’s also concerned about the phasing out of disability living allowance and the phasing in of the personal independence payment.

So.

I hope Fred Goodwin is happy. And warm and well-housed. Because he and the financial sector are, of course, the real victims in all of this. Or something.

Anyway.

An afternoon discussing it all at Sean and Maggie’s house:

Sean: I had [behavioural] problems from about the age of six. My symptoms were social issues – not playing well with others. I was very protective of my things. If someone snatched something away from me, I would react violently.

We emigrated to America when I was a child. I grew up in a small New England town which was very conservative. If you weren’t like they were, you were seen as very much an outsider. I already had a strong English accent and I got picked on for that. I had a terrible stutter (what you call a stammer over here) and it took years of speech therapy to help correct that, but under stress it returns.

They said I was lazy and stupid, because you know – with the Asperger’s, I have dyslexia and dyspraxia and several other issues which just makes reading, writing and maths difficult as the letters move and dance around on the page and make it hard to focus. I could not get the letters small case “d” and “b” right and I still have difficulties to even spell my name. “Ae” I got mixed as well.

It was terrible for my education and life and they just said I was just stupid and lazy. My dad said the same – that I was stupid and lazy. When I was about 42, I was finally diagnosed with Asperger’s. It was the condition that affects everything – your social life, your relationships, I’ve never had that many friends. I try to get along with people, but they have a hard time to understand me.

Maggie: It is incredibly isolating. I’d never tell the other people who live in these flats around here (about my schizophrenia), because I don’t know how they are going to react. They would probably run a mile.

Sean: When I went to meet you from the train station (they both met me today at the station when I arrived), that was the first time I’d been out for a month.

Maggie: People abuse us.

Sean: We’ve had trouble with kids coming around here throwing rocks at the windows. It was endless calls to the police to end it…. as far as cuts, around five years ago, it was the Labour government that cut the groups for local mental health users, both support and social. It was nothing to write home about, just bingo, bottle drives and a fish and chip supper once a month, but it was something. That’s now just a distant memory.

Maggie: I was born in Northampton and I’ve been in Wellingborough since 1980. I was diagnosed with schizophrenia in 1997. It’s hard to tell the difference between what’s real or in my head with paranoid schizophrenia. Seeing things that aren’t really there. Hearing voices in your head and things like that. Suspicious of what people are thinking. Not knowing what’s real and what’s not. I first had my breakdown when I was 21. I’m now on daily medication. I was sectioned in 1997.

I go out shopping, but I don’t really like it. It is hard, going out. If you have schizophrenia, you see the world differently. You are very suspicious of people. So, it’s hard when I go out, but I force myself, because I think if I don’t go out, I’ll feel isolated and I won’t be able to cope with anything and deal with everyday life.

Sean: This country is dead. It’s taken over by greedy, selfish and inhuman [people]. They removed us both from the local community mental health service, because they didn’t have enough doctors, so they cut half the patient list. Mental health services have been decimated.

Maggie: We’re actually supposed to have a nurse and a social worker. They don’t even have enough doctors, let alone social workers.

Sean: There’s a waiting list there and we’d have to go through it all over again. We are getting no support. I never get physical, but it is verbal, calling each other…

Maggie: You’re more verbal than physical.

Sean: We’d like to be able to have a psychiatrist. But they said if things go wrong, just call the police. I’m not going to call the police on Maggie, because they called the police on her the first time round when she was sectioned.

Maggie: They treated me like a criminal (when I had my first breakdown). They put me in a cell and I freaked out quite a lot. They were sitting down with me and trying to calm me down and things like that. Then they took me to a hospital in Kettering. They were giving me all these injections, to sedate me. There was a doctor in there and he was asking me all this stuff and the sort of thoughts I had.

It’s hard to remember that far back. I was saying things about the government and he was trying to get me to say if it was real, or if it wasn’t and I couldn’t tell. I was really delusional and paranoid. The medication helps. That’s about all they do. It just sort of bloats you. They just give you the medication and send you on your way. If you go a while without a crisis they assume you are okay.

Bedroom tax

Late last year, Sean and Maggie had a call from their housing association to ask if they’d be able to pay it.

Sean: We said “we’ll have to. We don’t have a choice. We don’t want to move out of here…” I’m not moving out of here. The [spare] bedroom is about as a long as this hallway It’s a walk in closet.

Maggie: It’s like the one I was in before this one.

Sean: That was shit. You couldn’t open the door with the bed it in and you couldn’t make the bed without sliding and pulling the bed towards the door. It was like being a fucking hamster or something…. They will have to come in with the police and drag me out, or they remove me in a body bag. They’re ruining the lives of hundreds of thousands of people, many much worse off than we are.

Just think back how this mess started -it was the greedy, incompetent banks that made this mess. They still get massive wages and bonuses and we get the shite end of the stick.

It starts snowing as we walk towards the Methodist church on Banks street in Garston for Wednesday’s anti-bedroom tax meeting. It’s as cold as a morgue out here. Everyone remarks on the glacial air. It underscores the fact that homelessness – the endgame of a vile “initiative” like the bedroom tax – would be beyond appalling. I have to walk around the block to use time up while we’re waiting to go in. The woman who usually opens the church for the meetings is a bit late this evening and the thought of an extra ten minutes out in the freezing air makes me want to sit in the bus-stop and bawl.

Anyway. There are people I know here now. This is the second bedroom tax meeting to be held in Garston and quite a few people have returned this week and so there is a friendliness and familiarity to things. This is, I suspect, what organisation looks like. I have no idea where it will go, but I can see why Labour worthies are worried that it’ll get there without them. People are making their own connections. People have been making their own connections for a while.

I talk again with John,* the 56-year-old man I met here last Wednesday. He’s unemployed and liable for two bedrooms if the bedroom tax goes through: he’s living in the three-bedroom house that he’s lived in all of his life. He says there are only two bedrooms, really: the smallest one is so small that he and his mother (who died some years ago) never used it for anything but storage. If he has to pay for the two “extra” ones, he’ll have to find about £40 a fortnight out of a jobseekers’ allowance of around £130.

He’s in an impossible situation – and a ridiculous one, as it turns out. He tells me that his housing association has asked him if he’d consider moving into a two-bedroom property from his three-bedroom one, because it doesn’t have any one-bedroom flats available. The thing is: “they said you can move into a two-bedroom flat, but you’d still have to pay the bedroom tax (for the extra bedroom) on that. So, that’s moving and paying for the privilege of moving. I said – well what’s the good of that?”

What good indeed. If, as John says, you factor in the cost of moving (and he doubts very much that he could pay it) to a two-bedroom place and then a one-bedroom home if one ever became available, surely he and the state would be better off if he just stayed where he was. But this is not about finance. It was never about finance. It is – as many people say this evening – about maliciousness and causing terrible instability and pushing people who claim any sort of benefit out of homes into the cold.

That’s why, John says, “we’ve got to show them if you know what I mean. Liverpool people will take a lot, but when they get pushed too much – it’ll be like, that’s enough. If it does get bad, you’ll get people who have never done it before who are going to rob. They’ll be saying: I’ve got a family to feed, I’ve got a wife to feed – do you pay your bills or starve… once October (and Universal Credit) comes in, it’s going to go Boom, you know.”

Margaret*, who is from Speke, feels very much as though she’s being pushed too far. She has two-bedroom flat which she was moved into about 13 years ago so that she could care for her 87-year-old mother who lives nearby. “I’ve saved the state thousands of pounds in carers’ fees (by providing that care service for her mother)” she says through gritted teeth. “That’s how I’m served for doing that.”

She’ll have to pay for the extra bedroom out of her small benefit. “They don’t care where you find it. They don’t care if you’re on the bones of your arse.” Her housing association rang several weeks ago “to tell me I was one of the chosen to pay and I said Yes, I know. [The woman on the phone] said “the government has asked us to ask all of our tenants if they would be interested in taking a lodger.”” Margaret thinks she will be affected by cuts to council tax benefit. She’s waiting to find out how much she’ll be expected to pay. “This is malicious. [They think] we’re no good. We’re not bringing a profit to anyone, so what use are we? This is just the thin end of the wedge.”

Her friend, Eileen*, agrees. She also has one spare bedroom that she’ll be asked to pay for. Her son, meanwhile, has two young children – a boy and a girl – who’ll be expected to share a room, because they’re both under ten.

In the meeting itself, I’m struck again by the fact that there are no councillors or MPs present. This is the fourth meeting I’ve attended in ten days and I’ve not seen an elected representative at one. It’s hard not to conclude that people are on their own with this – that if they’re really going to overturn this policy and protect social housing for good, they’re going to have to do it themselves. March 16 may be a great day, but my concern is that it will prove mainly to be a great day for Labour. There’s a lot of very good organisation taking place as we speak. It’s been taking place for some time. Why wait and wait and wait to actively support it? (Rhetorical question, that).

I do note that nobody asks where councillors are this evening (they did ask that question last week). They talk more about the sort of action they can take themselves.

“You can do lots of things,” says one of the women who is from the Dingle organising group. “You can open your gob and you can talk. They’ve suppressed people’s voices and this has been going on and we haven’t even been aware of it. They cut all our social places and they’ve trapped you in your homes. So people are scared and are thinking we’ve got to accept it, because we’re on our own. They’ve done the media. They’ve done the radio. It’s seeping out a little bit, but not enough. They’ve done it in such a way that people are all trapped now in their house.”

One of the older men who was here last week says “this not the first time in Liverpool [where we’ve had this kind of attack]. We’ve had years of it – when we had proper unions and docks. The young people have a different attitude now. They’re not political like in the 50s and 60s. The kids come at it from a different angle. They’ll just do it. If you got kids, you know what I mean.”

“We can bring it together as one community,” the woman from the Dingle group says. “Everyone has a talent. There’s a person who is good at communicating – so you send that person out. There’s a person that’s good at words – so you put that person out there. You’ve got to do this for your kids, right. My son was very negative, but he’s started to ask what is going on. I’ve got his interest now and that is massive. They need us to take the lead and to show them how this is done.”

*surnames withheld

Guardian article by me (with the video interviews) on the closure of the independent living fund:

“High on the list of this government’s god-awful initiatives is a vile recent decision to close the Independent Living Fund and devolve it to councils. You may have been wondering how low things would go with this government. This story should give you some indication.

The ILF was set up in 1988 as a stand-alone fund to which people with severe disabilities could apply for money for added carer hours. That extra money meant that people could afford to pay carers for the help that they needed – round-the-clock, in some cases – to live independent lives. It meant, in other words, that people with severe impairments could look forward to more than a life spent staring at walls in under-resourced care homes. Which is as you’d hope. Anyone who is even vaguely human wants to know that certain support systems are in place. Suffering a serious injury and/or disability, which let’s not forget, any of us might, is surely challenging enough without also finding that your human right to independence is in society’s ever-burgeoning “can’t afford it” category.”

Read the rest here

As in the Society Guardian today and the print version tomorrow:

The people in the videos on this page are all recipients of Independent Living Fund payments.

The ILF was set up in 1988 as a standalone fund to which people with severe disabilities could apply for money for added carer hours (the ILF tops up council care funding for recipients in this article). That extra money meant that people could afford to pay carers for the help that they needed – round-the-clock, in some cases – to live independent lives. It kept people out of residential care.

In 2010, the Independent Living Fund was closed to new applicants. Then in 2012, the coalition government announced that it would “consult” on the future of the fund for the ILF’s 19,000 existing users. The upshot of this was, towards the end of last year, an extremely unpopular decision to close the fund and devolve it to local authorities.

The money will not be ringfenced. It will be left to already cash-strapped councils to fund care for people with the most complex – and expensive – needs. That prospect is dire in the current council funding “environment. Councils can’t meet demand as it is. Many are tightening eligibility criteria for care. FOI numbers reported in the Independent last year showed that more than 7000 disabled and elderly people had lost some or all of their state-funded support after cash-strapped councils changed their rules on who qualified for social care. Councils have already been taken to court for trying to restrict care services, or for increasing charges for care, or capping the amounts that they spend on claimants.

There are links to more stories about the ILF closure at the end of this post.

Sophie Partridge (writer and actor. Requires 24-7 care support. Islington council pays for some of that care and the ILF the rest).

“We can’t be cast as victims all the time. It’s difficult, because we do have to fight the good fight wthout appearing pathetic cripples.

My PAs (carers) do everything physically that I can’t do for myself – like me getting up, going to the loo, washing, dressing, cooking for me, cutting my food up, cleaning, laundry, driving me in my van… the idea of going into a carehome is too scary to even contemplate to be honest with you. We have to ensure that that does not happen.”

Gabriel Pepper (Walthamstow writer. Waltham Forest council pays about a third of his care costs and the ILF the rest)

“I’ve had three brain tumours. The [third] tumour is deep frozen in my brain through a process which has changed the DNA somehow.

I don’t believe that the Tory party will ever hang their heads in shame, because they don’t have shame, but I believe that it can be shown that they’re not above the law. And I think that people should be prosecuted for crimes which they have done against humanity.”

Penny Pepper (Islington writer and journalist: Also requires 24-7 PA support. Islington council pays for just over half of that support and the ILF the rest).

“I’m assessed as needing 24/7 (care) and ILF pay roughly just under half of that and Islington council pays the rest. The council funding would not be enough to retain my personal assistants.

This bizarre idea that you can eat sandwiches and lie in bed and use incontinence pads that is coming our way – that will effectively mean the end of my career… You’re faced with these choices now. It’s like – [you can choose] neglect at home, or residential care abuse. A lot of us are saying – [we prefer] neglect.”

Kevin Caulfield (working and studying to be a barrister. Care part-funded by Hammersmith and Fulham council and the ILF):

“[I started by] using domiciliary care agencies – which were not meeting my needs. A different person was coming from the agency every day. I was a man in my 30s and I was having to go to be at 9.30, ten o’clock in the evening. It was incredibly stressful,
particularly for somebody who had recently acquired a significant impairment.

[Consistent care] has enabled me to stabilise my health. I’ve been able to work during the last 20 years, 15 years. I’ve been able to go to college – I’m training to be a barrister. These are things that I would have been able to do in my life if I wasn’t a disabed person – but certainly things that I couldn’t do without the support of my local council [with a payment] which is backed up with top up money from the Independent Living Fund.”

More on the ILF:

Discussions with people affected by the closure of the Independent Living Fund

DPAC: vigil at court hearing to save the Independent Living Fund

Update Tuesday 30 April: Discussion of the DWP’s confirmation that Atos does not report to the department on the performance of mental function champions

Because this has turned into a long blog which I’ve been updating for several months, I’m going to start this update with a brief background for new readers:

For several months now, I’ve been trying to get the DWP to explain how it quantifies the performance of mental function champions. Mental function champions are the individuals whom Malcolm Harrington suggested that Atos add to the work capability assessment process to “spread best practice amongst Atos healthcare professionals in mental, intellectual and cognitive disabilities.” The role was created as a concession to the many serious concerns that people have raised about the appalling effects of the Employment and Support Allowance work capability assessment on people with mental health illnesses (I wrote a long article about that, the experiences of people I’ve interviewed and attended WCAs with and concerns about WCA descriptors and outcomes here. There’s a good anlysis of concerns around regulations 29 and 35 here). Mental function champions do not advise or support ESA claimants: they provide advice and coaching to Atos healthcare professionals.

Last year, on November 5, Mark Hoban told parliament that “we have introduced a mental health champion in every single assessment centre throughout the country.” Actually, he had not. The DWP told me that 60 of these MFCs were in place and that they largely worked a phone advice line. The DWP didn’t want to go further than that: its officers told me to contact Atos for more on MFCs.

Pinning Atos down on the details has been a struggle, as readers of this blog will know. Since late last year, a group of Newcastle mental health service users and support workers and I had been asking Atos to agree to a meeting up between us and MFCs. There were concerns about the real impact of MFCs on WCAs for people with mental health problems.

Harrington observed in his year three review: “…mental function champions have been introduced at a regional level, rather than in each assessment centre as was originally recommended. Given scarce resources, the review supported this approach… Some representative groups claim that awareness of the champions is low, and that those who are aware of them believe they have little or no impact on the quality of mental function assessments. The review asked Atos to report on the effectiveness of their mental health champions. They said that their healthcare professionals found the champions to be ‘a great resource’ and that they were of ’great use to put any uncertainties into perspective’.”

We wanted to meet with at least one MFC because of the uncertainty about the role and its impact on WCAs for people who must go through them. It’s all very well to claim a champion is a “great resource” and of “great use” but that claim needs to be quantified, especially on a topic as serious as this. Considerable concerns remain about the experiences of people with mental health illnesses as they go through work capability assessments. Transparency around the MFC role is required and that is why we sought a meeting. The meeting went ahead very recently, on the proviso that I did not attend (you can read the story of the attempt to set up that meeting below, on the original blog).

Several things have happened since I first posted this blog. The development I’m updating here is that Hoban and the DWP concede that Atos does not report back to the department on MFC performance. We’ve been trying since February to get details about the measures Atos uses to report MFC performance to the DWP. The North Durham MP Kevan Jones has also been pursuing questions on this topic in parliament as you’ll see below.

The questions I sent to the department early in February 2013 were: “Could you let me know what measures there are for reporting MFC performance to the DWP and if there are such reports, where they are kept – ie, does Atos report to the DWP on topics like the number of calls MFCs take, the topics they cover, satisfaction rates from HCPs for the service, etc?” The DWP finally came back today and said that “Atos don’t report back to the DWP on things like that” and recommended that I ask Atos for its reporting procedures. There are alarm bells going off all over here. How can the department monitor the impact of MFCs on the work capability assessment if it does not formally monitor the role?

Kevan Jones has been trying to find out more via the parliamentary route and getting nothing helpful from Hoban:

25 March 2013:

Kevan Jones (North Durham, Labour) Hansard source (Citation: HC Deb, 25 March 2013, c991W)

“To ask the Secretary of State for Work and Pensions to whom Mental Function Champions (a) report and (b) are accountable; and how such a reporting process is documented.”

Mark Hoban (Fareham, Conservative)

“Mental Function Champions report to their line managers within Atos Healthcare. There is an annual appraisal process for all health care professionals.”

And then most recently: 10 Apr 2013

Mr Kevan Jones: To ask the Secretary of State for Work and Pensions (1) what performance measures are in place to evaluate the effectiveness of Mental Function Champions on workplace capability assessments;  (2) what data his Department collects, maintains and holds on the performance of Mental Function Champions.

Mr Hoban: “There are no formal performance measures around the role of the mental function champion and no separate data is held on the specific performance of mental function champions but routine monitoring of the quality of assessments and customer satisfaction takes place as part of the contractual arrangements between DWP and Atos Healthcare. In addition, Professor Harrington’s second review noted that the mental function champion role is being well-utilised and that health care professionals have welcomed the advice and support.”

He doesn’t measure the performance or impact of this role? How does he know what real impact it has had on an assessment process that has been so problematic for people with mental health problems? More importantly – how do we?

More soon.
—————

This is an update for Sunday April 28The meeting went ahead. More on this soon. Neither Atos nor the DWP have been able to produce reporting information, KPIs, or monitoring information for us on the MFC role, despite repeated requests.

Update Sunday March 24 There has been movement of a kind on this, with a meeting of one hour set up. More on that and other developments soon.

Update Thursday 14 February 2013: Atos has been in contact and discussions are underway to set up a meeting. Interesting. They reckon they sent an email to a generic email address of one group on the list and made a phone call a week or so ago – a fairly half-hearted attempt to set up a meeting if you ask me, but at least we’re underway. Ish. I want to know what this role really does, or doesn’t, do for people with mental health problems who must go through WCAs. I’ve seen plenty of examples of the problems WCAs cause people and more needs to be known about this MFC role – the role that was created to, purportedly, improve WCAs for people with mental health problems. More soon.

———-

Original blog:

For several months now, as readers of this site will know, a group of Newcastle mental health service users and support workers and I have been asking Atos to agree to set a meeting up between us and Atos’ work capability assessment mental function champions. (Mental function champions do not advise or support claimants: they provide advice and coaching to Atos healthcare professionals).

I’m posting this article to let you know that despite repeated assurances from Atos that our meeting will be organised, it hasn’t been. Atos keeps saying it’ll set a meeting up for us, but never does. We call Atos and we email Atos and they say they’ll get right onto it. They don’t. So we call Atos and email Atos and they say they’ll get right onto it. They don’t. So, we got in contact with Atos again about a fortnight ago and were assured that a call would be made and a meeting would be set up. Nothing’s happened. It has occured to us that Atos doesn’t want us to meet with mental function champions. Or something. We’re sure that they’re there, etc. We just want to see them and find out more about the “role.”

Mental function champions are the individuals Malcolm Harrington suggested that Atos added to the work capability assessment process to “spread best practice amongst Atos healthcare professionals in mental, intellectual and cognitive disabilities,” whatever that means. Last year, the DWP told me that 60 of these MFCs were in place (I suppose we take that as written for now) and that they largely worked a phone advice line. Mark Hoban went somewhere else with it, into territory that may best be described as make-believe: on November 5, he told parliament that “we have introduced a mental health champion in every single assessment centre throughout the country.” The DWP rowed back on that and admitted that there wasn’t a mental function champion in every single assessment centre in the country. There were/are 60, apparently, and they’re mostly on the phone. The DWP didn’t much want to talk about that: its officers told me to contact Atos for more on MFCs. And as I say – pinning Atos down on the details has been a struggle.

In his first-year review of work capability assessments, Harrington observed that concerns had been raised about Atos assessors’ knowledge and understanding of mental health conditions. “The short training course in mental health that Atos assessors receive is proving nowhere near adequate to allow them to accurately assess applicants,” MIND said in the review.

I’d take it a good few steps further than that. Complaints and concerns about the appalling effects of WCAs on people with mental health problems are, as I’ve written before, widespread and well-documented: work capability assessments and descriptors for disability benefits place too much emphasis on basic physical readiness for work, do not account for the fluctuating nature of some mental health illnesses and assume that everyone is always in a position to offer a detailed picture of their circumstances. Once found fit for work, people’s benefits are cut, they must appeal or apply for jobseekers’ allowance, they can fall behind on their rent and bills and their mental health really begins to deteriorate, as this doctor will tell you. I have witnessed some of this myself, having attended work capability assessments with people who have mental health problems and followed them as they have gone through the stressful appeals process. Stephen, a 54-year-old man with schizophrenia who was one of those people, got a zero-points score in his initial WCA assessment, but was placed in the ESA support group on appeal – a monumental turnaround by the DWP that made everyone involved wonder at the criteria. Claimants with mental health problems have sought recourse in court: last month, the courts heard a case which, if won, will put the onus on the DWP to make sure medical evidence from practitioners is sourced from the start of the ESA application process for people who have mental health problems.

Those issues being very much the case, it is understandable that people with mental health problems and their supporters want to know how the MFC role works. Meeting with champions and asking them about their daily role seemed as good an approach to this as any. It certainly seemed a better approach than asking Atos directly, given the thin results that has yielded.

I asked Atos to explain exactly who MFCs are and the skills they bring to WCAs. Atos’ response was short on specifics: the company had, apparently, “invited leading external experts in mental health to help shape the role for the mental function champions,” and the champions “work alongside our healthcare professionals, supporting them in a range of different ways.” The word “alongside” could be considered a stretch – as we’ve seen, the DWP said that MFCs advise Atos HCPs down a phone (“telephone-based support” Atos calls it). Details of the “different ways” support was provided were not forthcoming in the response I received. I received this instead: “Our mental function champions are selected for the role because they have considerable expertise within the mental function field. They may already have higher training or a higher qualification in the field of psychiatry or have experience working in Mental Health, Learning Disability or Cognitive Impairment.” Presumably, the word “may” there means that some may not. There’s an awful lot of Maybe going on here.

Anyway. People want to meet with MFCs because they want to know more about the “role” and see it in action. It’s important. It’s very important. The MFC role is, it could be said, to be the main means by which concerns about WCAs and mental health problems have been “addressed” (ahem) to date. So – people need specifics. They need to know how, on a day-to-day basis, the role “spreads best practice” so that it improves WCAs for people going through them – assuming that is what is does. As I’ve observed – the jury’s out on that one. Things are too difficult for people going through WCAs for this topic to be left at a few press statements from Atos. I know we’re not the only people who are interested, too. I’m also pretty sure that Atos doesn’t want us to be.