Wednesday 25 May 2011

The "We're Fine" Update

And from the whole of the Broken of Britain team I can say we are. Fine I mean. Ok so one of us has just got out of hospital from yet another infection, one of us has a 'wonky' heart, one of us has just moved and is suffering the increased health consequences, one of us has been diagnosed with dehydration, malnutrition and exhaustion, and another has a chest infection. But we're spoonies so we're all fine. 

To us 'fine' can mean not knowing what day it is, what our own names are or where we are. It means the people who love us standing over us with fear and worry etched on their faces, begging us to slow down, to see a doctor. It means those who care saying with broken resignation in their voices " but it shouldn't be like this, this is Britain". It means sitting back and watching us deteriorate until we have no strength left to argue otherwise, overruling and sending for the doctor. But still we'll tell you that we're fine if you ask.We'll probably even claim we're fit for work when we're like this, to us it's just a natural consequence of the risks we all knew we were taking with our health by campaigning but felt we have no other option but to continue anyway. 

To help you understand our 'fine' it might help to explain that not all of the 5 of us will live to see the end of this fight. Our conditions vary, but we are united in our shared understanding that this battle is bigger than each of us, more important than our individual lives, that it is literally a war we will wage with our dying breaths to protect those who we know will come after us, those we wish a better future for.

But it is a war with huge, terrible costs associated. Not bullets and bombs but no less lethal all the same. We step back and regroup because we have no choice, our bodies are weakened by the ferocity of attack against us. When ordered to rest we fret and worry about those with no-one to care for them, to fight for them and through our delirium insist on trying before falling back in a grudging, tactical retreat. 

The energy to fight will always be found - it's taken 3 days to write this much. To try to explain to you that this is the reality of 'fit for work'; that no matter what we do, what efforts we go to, we fight this because it is wrong. It is wrong to traumatise sick, disabled and dying people already living difficult enough lives for being unable to manage their bodies or minds well enough to sustain work.

But please don't believe that we are 'fit for work' or even that it's true when we insist to you

"we're fine"

Sunday 22 May 2011

Response to Personal Independence Payment Draft Assessment Criteria

The PIP draft assessment criteria were published a couple of weeks ago, and The Broken of Britain has been putting together a response, informed by your comments. Here is a rough draft of the response. Your input would be highly valued - if you have ideas or alterations to be made, please e-mail

The response is pasted below:

This is a submission by The Broken of Britain, an user-led disability rights campaign. This critique of the draft assessment criteria for the Personal Independence Payment have been informed by the opinions of our members.

As a disabled persons’ organization, The Broken of Britain must begin by making some general observation on the subject of the Personal Independence Payment, despite the fact that we recognise that many of these points will be outside the remit of the Personal Independence Payment Objective Assessment Development Group.

The first point to make is that many disabled people were angered by the fact that the decision to reform Disability Living Allowance was taken without consultation, and further angered that the Welfare Reform Bill was published before the consultation on DLA Reform, intended to inform secondary legislation, was closed. As such, there is a great deal of suspicion surrounding the Personal Independence Payment and its intentions. In developing the Regulations for assessment, you will need to provide reassurance to current DLA claimants that the tests are of unimpeachable fairness and is sympathetic to personal circumstances.

There are several problems with and weaknesses in the draft assessment criteria. Many who contributed to this submission expressed concern that, in general, the assessment criteria were setting the bar too high. Many note that the new system is designed to help only those who were incapable rather than those who could ‘get by’ with support, abandoning the concept of an enabling welfare state and disabling many who are currently enabled by claiming DLA.

Problems with the model

The broad principles behind the development of these assessment criteria are flawed. This is particularly so for the principle of ‘more defined and objective criteria’ but also wishing to design criteria which are easy to understand and consistent in their outcome. There is a fundamental conflict here between rigour and objectivity on the one hand, and consistency of outcome on the other. This conflict arises because consistent decisions will be based upon the proxies that have been defined. However, it is possible for two individuals who satisfy the same proxies to be impacted on by their impairment or health condition in different ways, such that their level of disability is not equivalent. Further, the proxies will have been defined in a subjective manner, thus influencing the outcome. As such, making decisions consistent in their outcome is not helpful, as an objective and rigourous assessment would require consideration of all aspects of an individual’s disability.

In terms of the assessment being more holistic, there are so many types of impairment, and combinations of impairment, each having its own disabling impact, that it will not be possible to design proxies that reflect the full range of impairments. A less medical approach is important, as the social model of disability demands. However, it is important that medical evidence is still considered by the assessors, as the nature of the disability is most often linked to the nature of the medical impairment. Making the assessment ‘more active and enabling’ is also important, but the assessment must not ignore that disability is caused by barriers, whether social or medical, that interfere with the person’s ability to complete certain tasks. Getting a full picture of the disability may mean asking what the claimant cannot do, and this should be at the claimant’s discretion.

A methodology using descriptors to assign points on daily living or mobility activities, as set out in Part 2 of the regulations, is unnecessarily prescriptive, and is a blunt and undiscerning instrument of assessment. It is important that:

• the assessment criteria are elastic so that the assessor is able to look at the claimant’s disability holistically rather than deciding on eligibility from a narrow set of rigid descriptors which may not be useful in certain cases.
• the assessment should not focus exclusively on a person’s ability to complete certain tasks, but rather should ask how carrying out this task, if at all possible, would impact upon the claimant’s general health and well-being. Ability to carry out a task as prescribed by the assessment criteria should be judged only by considering how the claimant would cope with carrying this task out repeatedly.
• it is ensured that all claimants understand the assessment criteria and the requirements placed on them prior to the assessment.
• the use of proxies to determine the impact of illness or impairment upon the claimant is not applied rigidly and allows the assessor to consider broader information, especially in cases where the claimant’s disability is not apparent when the proxies are used.
• evidence from General Practitioners, consultants and other specialists, surgeons, registered nurses, psychiatrists, psychologists, therapists, occupational therapists, physiotherapists, and social workers, will be considered.
• the face-to-face assessment is not more heavily weighted than specialist medical evidence during the decision making procedure.
• the claimant has the right, if they choose, to submit two pieces of personal evidence – a personal testimony discussing the impact of their disability, and evidence from a friend or family member discussing the impact of the claimant’s disability from a third person perspective.
• there are multiple possible formats for the claimant’s personal testimony. In the case of a variable condition, the testimony may take the form of a diary of the claimant’s condition.

Further, Personal Independence Payment, like Disability Living Allowance, will provide a cash contribution towards the additional costs faced by disabled people as a result of needs arising from a health condition or impairment. The nature of these costs are not specified and, if proxies are to be applied at all, they should be represented by a comprehensive list of daily living and mobility activities. The activities to be assessed for the daily living is a small list of tasks that are essential to personal health and well-being whereas independent living might include making a cup of tea, washing clothes, completing weekly shopping, fetching a book from a shelf, and the maintenance of a social life.

The extra costs of mobility are proxied by only two activities, which is simplistic and not reflective of the difficulties of mobilizing when disabled. Moving around is not one simple task – a journey over 50 metres is different when traveling downhill or traversing a gradient, negotiating a physical obstacle or moving in a crowd. There are also other barriers to the planning and following through of a journey than the ones mentioned, such as communication barriers from difficulties asking directions to not hearing/seeing/understanding notifications and warnings.

Problems with the set of descriptors

• The descriptors for daily living activities focus, for the most part, on the ability to complete tasks related to personal care from eating to washing. The stated aim of PIP is to support independent living including accessible information, peer support, accessible housing, access to aids and equipment, access to personal assistance, accessible transport, accessible housing, and access to education and employment. The assessment criteria should be widened to accommodate these facets of independent living, thereby acknowledging the complex nature of disabling barriers.
• The descriptors for mobility activities are too few and overly simplistic, especially on the topic of assisted aids. The use of an assisted aid does not mean that the disabled person’s mobility is equal to that of an able-bodied person. The aid functions to compensate for physical impairment, not as a substitute.
• The descriptors for ‘Planning and following through a journey’ ignores the barriers to mobilising faced by disabled people. The difficulty faced by learning disabled people in planning and in coping with a journey is not addressed. Communication barriers to mobility and mobilizing are ignored. The physical barriers to planning and following though a journey – the need fore care assistance, the need for redundancy and emergency planning, the extra costs of travel as a disabled person – are not considered.
• Moreover, many conditions may allow a disabled person to move 50 metres, aided or unaided, a few times a day or requiring rest periods in-between exertion – but not enough to be of any practical utility to the person concerned. The descriptors for ‘Moving around’ fails to account for such situations.
• The descriptors for daily living and mobility activities fail to put communication needs on an equal footing with the barriers that disabled people face in relation to their physical or mental condition. Assessment ensure that the communication needs of claimants are taken into consideration as part of both the daily living and mobility components of PIP at both the standard and enhanced rates.
• The descriptors for both component fail to account for the interlinking of descriptors – between washing and grooming on the one hand, and dressing on the other; between buying food and cooking it; between planning a journey and mobilizing.
• The descriptors also fail to account for the complexity of possible answers in the sense that certain activities are only possible given certain conditions.
• Overall, the set of descriptors fails to proxy a claimant’s involvement in life situations, or give a narrow and limited definition of a disabled person’s involvement in life.

Additional to these problems is that medication is not noted when discussing how the criteria are to be used. A drug or mechanical medical intervention might be defined as aids to the performance of a bodily function. No consideration is given to the issue of extra costs, and the strong possibility of the disabling side-effects of many drugs is ignored.

Further, the assessment of variable and fluctuating conditions is to consider the claimant’s likely condition for the larger part of a one year period. This is hopelessly simplistic and claimants should be assessed with consideration of periods of severe illness in order to determine the full costs that they are likely to face.

Welfare For The People, By The People - A Consultation

Did you ever wish you hadn't started something?

When I started this blog, I had some hazy idea that perhaps I could share my stories and it might help other sick or disabled people to feel connected. I thought I'd tippety-tap away now and again, saving my poor hubby the trauma of 24/7 news bulletins and political rants.

I didn't for one minute think many people would notice. I'd used the odd forum here and there and imagined a kind of cosy support group where "spoonies" "sickies" and "crips" could enjoy reading the ramblings of someone who actually "got it"

I didn't think I'd find myself reading endless transcripts of a dangerous and callous welfare reform bill. I didn't think I'd be on radio shows or in national newspapers opposing cabinet ministers. I didn't for one second imagine my blog would shoot into the top 50 political blogs and stay there and I certainly didn't think I'd be invited to the Compass conference next month as a guest speaker.

And that's just the stuff I can tell you about!!

You may have noticed fewer posts lately and if you knew the stuff I can't write about (though I will) you'd see why blogging is having to take a bit of a back seat.

I've always liked to learn and OH MY GOD have I been learning. In just over 6 months, I've read just about every theory put forward on welfare reform over the past two decades. I've read Blue Labour, Purple Labour, Policy Exchange, Progress & Compass reports, everything written by Iain Duncan-Smith, James Purnell, Frank Field and Jonathan Rutherford**.

Shall I sum them up for you in a natty soundbite?

"I despair"

Or another?

"Get a bigger stick, throw away the carrots and beat 'em to despair"

I read their "proposals" with incredulous dismay. I wonder just how many have ever actually experienced any of the problems they wish to solve. From the mid nineties, politicians who timidly took the first steps towards reducing the welfare bill have been encouraged to "think the unthinkable" and over the years, they've forgotten that it was ever considered unthinkable in the first place. The "unthinkable" is now not radical enough and, as I write on an almost daily basis, we've reached the tipping point. We are on the brink of removing sickness benefits altogether and disability benefits are to be slashed so far, that sick and disabled people have only the last resort of our judicial system.

We have reached a stage, where only the Human Rights Act or the European Court of Appeal can save us now.

Why? How has it come to this? When asked to "think outside the box", why did every last politician think inside a tiny, claustrophobic box tied up with ignorance-string? How did the "scrounger" narrative get such traction? Why did every last politician consider how to throw us off benefits with little care or concern for where we will go? Why did a succession of Oxbridge educated men choose to focus on a mythical hoard of cheats and skivers, convinced that with bigger and bigger sticks we could be forced into work? If fraud is just 1/2 a percent, what convinces these men that most could and should work? When medical evidence assures them that many of us can't and, in fact, work will make us worse, why do they ignore it?

Now let's see how successful they've been. Since 1994, successive "work programmes" and schemes have been rolled out to get sick or disabled people back into work. Has the welfare bill gone down? Has business embraced us and modified their structures to include us? Have the private companies, paid billions to find us work been successful?

No, No and No.

Not one single thing has changed in 25 years. The sickness and disability benefits bill has stayed stubbornly constant and work programmes have pathetic success rates of between 8 and 15% (almost identical to the number of people who find work on their own)

The solution? Cheat.

Change the descriptors, make certain that fewer people will qualify and break a million eggs to make a rotten omlette. Since Labour started "cheating" in 2008 the rate of those claiming sickness benefits has fallen. Now the Conservatives are about to cheat in such a spectacular way that the financial bill will certainly go down dramatically, but at what cost? Using the model of the past 25 years, this will be considered a "success" as costs will finally be cut. Eureka!! All they needed was one almighty stick and a sneaky bit of legislation or two that effectively all but stops sickness benefits altogether.

One might think that if a government are serious about stopping sickness benefits, they would have their best thinkers devising plans to make sure that the people affected had somewhere to go. That they wouldn't be left to starve without some pretty cast iron guarantees that there would be an alternative. One might think that there would be research available to prove that pulling support would in fact be empowering and manageable, but there is none.

Having said all this, we're no closer to finding out "why?" politicians are convinced that we can all pick up our beds and walk - or are we?

Ladies and gentlemen, I give you the "Psycho-Social Model"

Allow me to paraphrase. (The link above will give you the scientific stuff, I'll just put it in Sue-speak.)

We are all sick or even disabled because we choose to define ourselves as such. Despite our various diagnoses, those that manage to work have a better psychological grip of reality and do not become "victims". We choose to stop working from a lack of confidence or fear of failure and become lazy and plagued by doubts. The longer this fear develops, the less likely we are to find work and stay in it.

Any symptom, and disability can be overcome through perseverance and the right mental stance - we simply need re-training in our attitudes. Hence the conclusion we reach today, where you ask what work you can do, not how your illness or disability limits you. Those unwilling (remember none are unable) to find work they can do will be abandoned.

Time Limiting ESA will enshrine this in law. If you haven't overcome these "psycho-social" flaws within one year and found work, the state will wash it's hands of you. That's why the language speaks of "helping" us into work. The paternalistic state will stop our metaphorical pocket money and take away our sweets if we are disobedient. If "encouragement" doesn't work, there are a whole host of sticks to beat us with.

This also explains an assessment that focusses solely on what we are physically able to do and ignores any  pain or symptoms or distress. Pain and symptoms and distress can all be overcome according to the psycho-social model, they are simply a part of our psycho-social weakness; shields to keep the world away, to wallow in our own helplessness. If you can swallow or do up a button or pick up a penny, you must, no matter what it costs you, or you are simply allowing neurological impulses to get in the way of a full and financially productive life.

It might not surprise many readers to find that Frank Field and James Purnell are the most zealous advocates of a psycho-social approach to welfare. Reading my red-top precis, academics may nod sagely, believing there is much to recommend the theory. And that is the vast, putrid, hideous, terrifying problem.

If you don't have MS or bowel disease or cancer or schizophrenia or alcoholism or parkinson's or lupus; if your research is conducted in an academic bubble of theories and sociological studies and think-tank jargon, you might as well be designing policy for fish. However much an affluent, out-of-touch politician might think a theory is the answer to all their prayers, you simply cannot make an unsound theory fit reality without cheating.  An alpha-male, who has sailed through life without physical trauma, poverty or disadvantage, will simply be totally unable to empathise with the nuances of suffering. They can no more design a welfare system that works than I could design a new offside rule.

Until sick and disabled people start to put forward their own suggestions, their own answers, we will remain in the hands of ignorance and arrogance. Until we are at the heart of policy making, we will suffer policies that may as well have been designed by aliens. The time has come where it is no longer enough to oppose, we must educate and inform. We must save ourselves, because my endless nights spent poring over welfare papers has convinced me that we have no alternative. Privileged academics and politicians have proven themselves horrifically incapable of even beginning to understand our lives and if we are to get a welfare system that actually works for us, we need to start making suggestions. We have the experience, the knowledge and the understanding and they never will.

So today, please use the comment thread below to explain what would help you. Contribute your ideas and suggestions no matter how silly or unformed you think they are. Share your stories of trying to work and how the system has failed or supported you. Make them essays or make them just a few words. I don't care how long or short they are. Tell me what work you could do and what support you would need to do it. Does the state itself trap you? What could business do to enable you? Is there a working model that could suit you? What type of work would you like? Why is it unavailable? Do you want to work? Would it make you better or worse? Would it increase your affluence or plunge you further into poverty? In an ideal world, what would governments be doing to support you?

Remember, this is a brainstorm. Write anything. It can't possibly be more banal, mis-guided or unworkable than the suggestions of successive politicians.

Please help. Join in, engage, show politicians our endless strength, our great value and our hopes and dreams. Help me and I'll do my very, very best to help you.

As I started this article by explaining, I have been given a voice. I have the privilege of a platform. It's your platform too and I need you to share it. Otherwise, I might just end up as another mis-guided fool who thinks she knows it all. I can speak for myself, but I can't speak for you.

*Finally, please share this article with anyone you know who suffers from a chronic illness or disability. Urge them to contribute to the consultation, tweet it on twitter, share on Facebook and email to friends. Any consultation is only as good as the people who take part. It needs variety and balance. Thanks. 

**Rutherford is the one beacon of hope. He exposed the psycho-social model and opposed incompetent welfare reform before most of us knew it existed. Read more here