Tuesday, 31 January 2012

Looking Under The Lid - The BioPsychoSocial Model

This was originally posted as a guest blog at Benefit Scrounging Scum.

Like many others, I've been anxiously watching what's been going on in the House of Lords with the Welfare Reform Bill. After all, it affects my future, very directly. I couldn't help but notice Lord Freud, the WRB's sponsor in the Lords, referring to a document he'd shown to "certain" of the Lords. He was using it as the justification for the Government's change from the social model of disability to the biopsychosocial model in drawing up the Bill. I wrote a post recently about the differences between those two models.

Anyway, it seemed a bit unfair to me, if they got to see it and we didn't. With the help of Twitter, I managed to get a pdf of the document in question. It's Models of Illness and Disability, by Gordon Waddell and Mansell Aylward - both from the Centre for Psychosocial and Disability Research at Cardiff University. The Centre is funded by Unum Group, whose relationship with the DWP has long been - well let's just say "interesting". A good place to start in learning more about that is here.

Now, there's certainly a lot I disagree with in the report. But it might surprise you to learn that there are things I agree with too. There's only space here for me to point out a few of the things I found, so I'm sure you won't be surprised if I concentrate on the things I disagree with!

The report starts by describing the medical and social models, and some of the limitations of each. Unfortunately, the authors seem not to have understood the social model in the first place! They describe it as applying best to those with permanent physical impairment, learning disabilities, and severe medical conditions. In fact, many people with learning difficulties and medical conditions (as well as those with mental health conditions) have argued that the social model, with its emphasis on societal barriers rather than personal experience of impairment, fails to represent their experience of disability.

The authors also, when talking about the social model, use the term "disability" interchangeably with "impairment". The social model sees impairment as an actual physical, sensory, mental or intellectual variation from the norm, and disability as the as the exclusion that arises through society failing to respond to those variations. They are not synonymous.

Waddell and Aylward then attempt to apply the social model to mental health. They have said earlier, however, that "mild to moderate" conditions often have symptoms without objective findings, which would mean there is no impairment. It's necessary to have an impairment to be disabled.

Aylward and Waddell speak constantly about "health conditions" and "healthcare". There seems to be no recognition that many people on disability benefits have disabilities (that are not also illnesses), and have no more contact with health professionals than able-bodied members of the public

They also talk about free will and personal responsibility, and point out (and this is fair enough, in my opinion) that if sick and disabled people receive benefits, they have to fulfil their side of the bargain by deciding if it is reasonable for them to return to work.The corollary is, however, that benefit decisions must be made with "understanding and compassion".

With recent decisions from Atos including finding a man in a coma fit for work, and requiring a terminally ill man with dementia to attend a "Preparing For Work" interview, it could surely be said that the government has breached this contract.

Fairness demands that rights and responsibilities work both ways, say the authors.The onus is on society to provide the necessary opportunities and support before imposing responsibilities on sick and disabled people. Well, those opportunities and support are certainly not in place as yet.

The biopsychosocial model (which I'll refer to as the BPS model from here on in) was only ever intended to deal with about 2/3 of people on ill-health benefits, with what they refer to as "common health problems" - things like mild to moderate mental health problems, musculoskeletal problems, or cardiorespiratory problems. Waddell and Aylward argue that such problems are very different from the severe medical problems and permanent impairments for which the sickness and disability system was originally designed.

A key underpinning of the BPS model is that work is good for you, and for your health. Now, I do agree (I AGREE WITH THEM ON SOMETHING!) that being out of work is bad for your health, but it's not quite as simplistic a relationship as they suggest. Just about every illness is more common the lower down the socio-economic ladder you slide, and benefit claimants are right at the bottom footing the ladder for everyone else. People working in unskilled jobs have very slightly less risk of getting the majority of conditions than benefit claimants.

The beneficial effects of returning to the job market generally outweigh the risks, say the authors, as long as there is a realistic chance of obtaining a "good" job from the perspective of promoting health and well-being, preferably locally.

In the present economic climate, even able-bodied candidates with "clean" sickness records cannot find work.What chance do we, as sick and disabled people, have? Pretty much zero.

The authors argue that medical treatment for "common health problems" focuses on symptoms rather than treating the cause. I would reject this claim. Depression, for instance, is now treated with medications that correct biochemical imbalances in the brain.

They discuss mental health problems specifically as being BPS disorders. Severe mental illness is the minority: the majority of sickness absence for mental health issues, they say, is for mild to moderate conditions like depression and anxiety. This bit made me rather angry! Having had severe depression and anxiety in the past, I can confirm it's no walk in the park..

So. Conclusions. I'm not over-impressed by the report - it's slack in its use of language, and its understanding of the preceding models it discusses.We can also see how the Government has cherry-picked from it, used the bits that serve its ideology (working is good for your health, etc) while ignoring the bits that don't suit (benefit decisions must be made with understanding and compassion, society must provide opportunities and support before imposing responsibilities on disabled people, etc). And the BPS model was only ever supposed to apply to 2/3 of "health problems" anyway, not all. Overall then, a resounding Fail, I'd say. Must try harder.

Oh - and must stop trying to apply this nonsense to the millions of distressed, vulnerable people up and down the UK who will be affected if this blancmange of a Bill goes through.

Thursday, 19 January 2012

Modelling disability #spartacusreport

Models. Not glamorous young men and women. Not scale representations of trains. But understandings of disability.

Models are simplified ways of describing systems: they help us understand what's going on, in a way that can influence social policy and public debate, and can also enable new and potentially more effective insights and methods of intervention,

So why am I telling you about them? Well, they've become very important in the welfare reform discussion.

In the Committee stages of the Welfare Reform Bill, the Government committed itself to the use of the social model of disability in the Bill. In the social model, disability arises from society's response to people with impairments. Physical, mental and sensory differences or impairments don't have to lead to disability unless society fails to react to them and include people regardless of their individual differences.

That puts the onus on society to make work, education etc accessible for disabled people. Disabled young people have just as high aspirations as their able-bodied peers, but are 2½ times as likely to be out of work, and those in work earn 11% less.

But earlier this week, when the Bill was being discussed in the House of Lords, Lord Freud announced that the Government had decided that the Bill should be based on the biopsychosocial model of disability instead. This model claims that biological, psychological and social factors all play a part in human functioning, in the context of disease or illness.

The biological component of the theory comes, clearly, from within the individual's body. The psychological part encompasses thoughts, emotions and behaviour, and looks for potential causes of a health problem such as lack of self-control, emotional turmoil, and negative thinking. The social part investigates how different social factors such as socioeconomic status, culture and technology can influence health.

A lot of its application is in illness behaviour. When someone becomes ill, they get certain rights (eg they don't have to work) but also certain responsibilities (eg they have to do what their doctor says and do their best to get well).

All sounds very sensible. Things worth taking into account. So what's the problem? Why am I writing a blog post about it all?

Well, for one, the biopsychosocial model is about health and illness, not about impairment and disability. It has nothing to say to the situation of someone who was, for instance, born with cerebral palsy. Even for the majority of us with long-term illnesses, "illness behaviour" is mainly irrelevant: we're not going to get better, no matter how hard we try.

Obviously some of us are going to recover, go back to work, lead normal lives again. That's wonderful. But many of us are not. I have progressive MS. I'm not going to be getting better - I'm going to get worse, and there is absolutely no way I'm fit to work at present.

But because the government has chosen the biopsychosocial model, there's a very real risk that after a year I'll be forced onto Jobseeker's Allowance: and face having it removed if I don't turn up for interviews because I'm unable to get out of bed. Or even, maybe, get a job, somehow (given the current climate), and get sacked because I fall asleep uncontrollably at my desk.

So, models. They're useful things, but they're kind of like jigsaw pieces. You can't just ram one in where you'd like it to go, and hope nobody'll notice - a bit of sky in the middle of the green grass, that sort of thing. The model has to fit. And the biopsychosocial model just doesn't.

PS I didn't want to make this post too long, so I'm stopping there, with models. It's very much worth your time reading up on the dubious nature of the DWP's links with the Unum Research Centre at Cardiff University, though. This is a good place to start.

Monday, 16 January 2012

Getting DLA #spartacusstories #spartacusreport

In 2003, I took really poorly with what turned out to be MS.My condition progressed from there. It took two years for me to get a diagnosis.

After a while, when I was really becoming restricted badly, I decided to apply for Disability Living Allowance. I could only walk very short distances - less than 40 metres or so - and my fatigue and balance issues restricted me badly in what I could do. I was using a wheelchair for longer distances.

I filled in the hugely long and complicated form myself: a mistake, as I later discovered. There are certain ways of wording things that are "understood" by the decision makers at the DWP.

It's depressing filling in a form like that. When you're trying to stay positive and focused on living your life, suddenly having to list all the things you can't do, write about your problems with washing, dressing, going to the toilet, doesn't really help.

A doctor came to my house to give me a medical. He asked me lots of questions, and confused me. When I finally saw his report, some time later, I didn't recognise it as relating to what I'd said. Apparently I could walk for about quarter of a mile without needing to stop, and had few problems with self care.

The DWP sent me their decision. They'd awarded me low rate care, and nothing for mobility. I didn't think that was right, so I appealed against the decision. At the appeal hearing, I was called a liar to my face and had the low rate care removed as well. Now I was getting no DLA at all.

I decided to take it further. I appealed the tribunal's decision to the Commissioner for Social Security. He decided I hadn't had a fair hearing, and that I should have another one.

At the new hearing, I was awarded high rate mobility and middle rate care. The award is indefinite, because my MS is progressive. Sadly, it's not going to get better!

The media is full of stories about scroungers who get DLA. I genuinely don't know how these people do it. Considering all I went through to get DLA, with a genuine condition...

Anyway. Please. Support Responsible Reform, the #spartacusreport. Yes, some reform is needed in the benefits system, but not the manic rolling-eyed machete-wielding currently on display from the Coalition.

Thursday, 12 January 2012

Rick Edwards, TV presenter, supports the principles behind the #spartacusreport

Disabled people can achieve as much as anyone else, but only when society supports them and listens to them before making any major changes affecting them.

Rick Edwards, TV presenter (T4, That Paralympic Show etc)

Annabel Giles supports the principles behind the #spartacusreport

Why, after all we should have learned over these past centuries, are we returning to survival of the fittest? It is bad enough to be born or become disabled; not to be consulted about the best way to be helped by those in the position to offer it is just wrong.

Annabel Giles, TV presenter and writer

Doctors support the #spartacusreport

The NHS Consultants’ Association believes that ill thought out reform to the DLA, with reduction of financial support to some of the most vulnerable members of society is not only unjustified, but also a false economy which will result in cost implications for carers and additional use of NHS services and resources.

Clive Peedell, on behalf of the NHS Consultants’ Association

It is important that in the quest to support employment in everyone, abled or disabled, that we do not underestimate the problems that many people with long term disabilities have in  carrying out even simple day to day functions. Insensitive assessment of disability and failure to understand the complexity of their problems might inadvertently result in removal of their benefits, causing more problems in an already vulnerable population.

Clare Gerada, Chair of Royal College of GP's

Boris Johnson quote from the #spartacusreport

The government proposes imposing penalties if disabled people do not inform the government in changes in their circumstances. However, the Department of Work and Pensions statistics give the overall fraud rate for Disability Living Allowance as being less than 0.5%. For those with fluctuating conditions asking them to report every change to their condition would prove very stressful.

Boris Johnson, Mayor of London

Wednesday, 11 January 2012

Christine Hamilton supports the principles behind the #spartacusreport

Most of us are lucky enough to take the basic functions of mind and body for granted, give or take the creaking of age.  But, equally, many of us know someone who is not so fortunate, either within the family or as a friend, or even a friend of a friend. 

To enable the most vulnerable people in our society to reach their full potential, we, as a community, must give them the support they need.  Changes will always need to be made to adapt to different circumstances, but we must never lose sight of the fact that those who will be affected by any change (or their immediate carers) must be consulted at every stage.

Christine Hamilton, author and media personality

Hardeep Singh Kohli supports the principles behind the #spartacusreport

The definition of a civilised society is one that makes it a priority to support the most vulnerable. Any major changes which affect the lives of sick/disabled people should not be made without their support and advice. The main issue for these groups is that they have been continually overlooked and seldom respected.  Now is not the time to overlook them. Now is the time to listen and act.

Hardeep Singh Kohli, writer, comedian and broadcaster

Val McDermid, crime writer, supports the principles behind the #spartacusreport

How we treat our vulnerable citizens is a measure of a civilised society. The way to do that is not to make high-handed decisions on their behalf but to consult directly with them about their needs and how those needs can be met. It's surely not too much to ask of a government that constantly tells us we're all in this together.

Val McDermid, best-selling crime writer 

Humza Yousaf MSP supports the #spartacusreport

We all want to see a simplified and fair welfare system. However, as a nation we have a responsibility to ensure we support the most vulnerable in our society. The UK-led Government’s proposals are deeply flawed because they hit those with a disability the hardest and that is why it was entirely right for the Scottish Parliament to withhold legislative consent. Hopefully the message will be loud and clear that the UK Government has to go back to the drawing board, find its conscience and bring forward fair proposals that we can all gather round.

Humza Yousaf MSP
MSP for Glasgow 

Tuesday, 10 January 2012

Joanne Harris, best-selling author of Chocolat, supports the principles behind the #spartacusreport

One of the criteria for a civilized society must surely be how we support the most vulnerable people among us; the elderly; the disabled and those who have long-term illnesses. I’d like to think that this country is civilized enough to do that, and that its leaders are humane enough to consider their responsibility fairly. Sometimes, however, our leaders can be curiously hard of hearing. Let’s hope that this report helps them to hear the voices of those  who need to be heard. 

Joanne Harris, author of Chocolat, the Runemarks series, etc

Monday, 9 January 2012

Reform has to be responsible #spartacusreport

I don't often blog about politics, but some things are too important for me to ignore.

The Welfare Reform Bill is currently making it's way through the UK Parliament. There are very many things wrong with this Bill, but I'll concentrate here on some of those affecting people with disabilities.

If you're unable to work due to sickness or disability, you get Employment or Support Allowance. (People on the previous benefit, Incapacity Benefit, are gradually being migrated over.) There are two types of ESA - one depending on your National Insurance contributions, and one depending on your income.

The Welfare Reform Bill will bring in a change so that if you're on the contributory version, and you have a partner who's earning any more than a pittance, your benefit will stop after a year.Yes, just like that. No matter how much poverty that plunges your family into.

Then there's Disability Living Allowance. The WRB proposes that this should change to a new benefit, tentatively renamed Personal Independence Payment. The Government made proposals about this, and put them out for consultation. All very good, I hear you say. What am I moaning about?

A new report, Responsible Reform, has been entirely drawn up by severely sick and disabled people. Using Freedom of Information requests, they have discovered that the Government misled MPs and peers about the level of hostility to disability benefit reform. Nearly all respondents to the consultation were opposed to the changes - up to 100% to some specific changes. This is the absolutely opposite to the Government's claims.

The consultation period was a sham anyway: it was two weeks shorter than the time-scale in the Government's own Code of Practice, this time was over Christmas anyway, and the period ended 2 days after the Bill was presented to Parliament.

So who's being responsible here? The Government, rushing ahead before consultation is complete, ignoring the results of the consultation, banishing couples and families to extreme poverty? Or the report authors, using the information from FOI requests thoughtfully to point up the flaws in the Government's actions and arguments?

I know which side my (benefit) money's on!