PIP: locking chronically ill people out of disabled benefits

PIP isn’t supposed to be about diagnoses. But even with my diagnoses, I have major difficulties getting benefits assessors from a range of professions – paramedic, nurse, doctor, disabled person, judge – to understand that my conditions have the impact upon me that is typical of those conditions.

At my recent Tribunal, neither the doctor nor the disabled panel member seemed able to understand my problems. The judge didn’t particularly try, her role being to interpret the law, not to understand the medical or functional problems.

The disabled panel member in a Tribunal is supposed to help the judge and doctor understand the impact of symptoms upon function, but unless the disabled panel member has the same condition(s) as the claimant, they have no better understanding than anyone else. I can’t comment from my experience of chronic illness on the impact of sight loss or learning disability or autism or bipolar disorder, and nor can they comment on my experience. In the academic field, people with static physical disabilities tend to be sceptical of and unwilling to accept or understand energy-limiting chronic illness.

The doctor is supposed to confirm that certain symptoms or diagnoses can cause certain functional limitations. But medicine is a very diverse field and there is a lot that we do not know about the body, including the brain. Medical professionals with other specialisms will tend not to be aware that, for example, the amount of dislocations or extent of skin extensibility experienced in hEDS is not associated with the level of illness and functional limitation. This is why I initially got my diagnosis not from a GP – who ruled it out based on the lack of dislocations and normally-stretchy skin – but from someone with hEDS who only had to look at me to suggest the diagnosis, and test my skin and joints to confirm it (I’ve since been diagnosed by a rheumatologist). And even people in the right speciality can lack understanding of individual conditions within it: my cardiologists are only interested in whether my Postural Tachycardia causes dizziness and blackouts, and not the excessive daytime sleepiness and exercise intolerance which cause my main functional limitations, let alone my many other symptoms of dysautonomia.

I shouldn’t therefore be surprised that, despite having problems that are entirely typical for my conditions, benefit assessors repeatedly fail to understand and accept them. If not even the doctor on a Tribunal panel is able to appreciate the problems I have, despite clear diagnoses whose hallmarks are those very problems, how can a paramedic, nurse, physiotherapist, differently-disabled person or lawyer? Nor did the doctor seem able to appreciate the problems of an under-funded NHS which means that very many people do not get enough treatment, timely treatment or even any treatment at all. The NHS doesn’t recall people for another round of consultant appointments just because it’s been three years since you last saw one. People with chronic illness are rejected for benefits simply because they’ve tried everything available and it didn’t work, so now they’re on their own.

All of this causes problems with assessing disability at all. But PIP has further problems that are specific to it, which could be addressed.

Part of the problem is PIP’s failure to address the way that illness works. For those of us who struggle with activity because of generalised fatigue and pain, the boundaries between being ‘assisted’ to do something and having someone else do the whole thing is unclear. If my assistant cooks bolognese sauce in the morning, and I heat it in the microwave with some pasta in the evening, was I assisted to cook or was the cooking done for me? Should I therefore get four points (needs assistance) or eight (can’t cook)? Why is it that what I actually keep getting is two points for needing aids, when aids can’t help me deal with being upright for a prolonged period in a warm room? (Let me know when someone has developed freeze-cooking whilst lying down).

The boundaries between able and unable are also unclear, and I think assessors struggle because the conceptual leap from ‘able’ to ‘unable’ without going via PIP’s intermediate steps of able with an aid (two points) or with assistance (four points) seems wrong to them. They expect a clear gradient of ability, not to be presented with cases where the judgement is on whether someone can do something just often and well enough to count as completely able, or just struggles enough to count as completely unable. Similarly, they expect some shared difficulties across activities: anyone who struggles with washing and cooking for strength-related issues ought to struggle with dressing, eating and toileting, so the idea that the former might be found difficult enough to cross over into ‘unable’ whilst the latter remain in ‘able’ is repudiated with shock.

What we actually need is a second gradient based not on the amount of assistance needed but on how often or how fast an activity can be performed. This is supposed to be captured in the reliably, repeatedly, timely, safely criteria but in reality this leads to the completely able/completely unable decision that assessors find so difficult to accept exists. Because PIP doesn’t consider this gradient in how often or how fast someone can carry out an activity, it completely fails people with energy-limiting chronic illness.

The current system relies on people who lack either the medical or disability knowledge to assess people with chronic illness, carrying out a test which does not allow for chronic illness. The result is that people with chronic illness – who are one of the largest groups of disabled people, and whose disabilities are least amenable to aids and adaptations – are locked out of the disability benefits that they so desperately need if they are to begin to live life on an equal footing with the healthy and able-bodied.

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