Monday, 8 April 2013

Squeezing the PIPs

Well, today sees the beginning of DLAs (Disability Living Allowances) being replaced by PIPs (Personal Independence Payments), the moment that disabled people on the whole have been dreading, largely because we're entering unknown territory. To be frank, none of us believe that it is not a cost-cutting exercise. We suspect that the PIP assessors will have been told to be "rigorous" (wink, wink, know what I mean?) and even given reduction targets to aim at. That impression isn't helped by reports that George Osborne refused to face Baroness Tanni Grey-Thompson, the disabled Paralympian, on TV (News report).

(Stop press: Just heard that Margaret Thatcher has died. Her PA who used to live in Stanford was an equally redoubtable woman. She found the young vicar somewhat tiresome but tolerable.)

I have just completed a survey for the MND Association which was asking about how we'd been looked after from before diagnosis and how we'd like to be cared for until we die. It occurs to me that this is at least one disability which usually is so rapidly changing that PIP assessors could no more keep up with it than the hard-pressed health and social care services. You see my brand of MND, Primary Lateral Sclerosis, is astonishingly unusual. It's over ten years since I received my diagnosis. The average life expectancy for MND patients from diagnosis is 14 months, i.e. from the time the doctor tells you what's wrong you're on this dizzying helter-skelter of losing your abilities until you die. The great thing about Disability Living Allowance was that assessing yourself with your doctor's advice you got access to a non-means-tested benefit quite straightforwardly. It was quite early on that I couldn't walk unaided, even with a stick. So I receive the highest mobility allowance, which enables us to lease a bigger car which I can get into and out of and we can fit my disability equipment in. It has considerably enhanced my quality of life.

Now imagine someone with a more normal rapid form of the disease. She's diagnosed. The PIP assessor comes round and our patient is still mobile and able to function reasonably at home, but within weeks she's losing her mobility and having falls round the house. Will the PIP fellow drop everything and come and reassess her? What do you think? Will he take her GP's or specialist's word for it? What do you think? On the present performance of assessors such as ATOS (the American multinational IT giant subcontracted by the government to assess suitability to work), it appears that on principle they discount the opinion of those who know the patient and the condition best. (See the Parliamentary Debate). As it is, I have had friends whose motability vehicles have arrived too late, and whose last months of life have been rendered harder than they were already by the slow delivery of service. Many of us fear that with the introduction of new, improved and supposedly more "flexible" system, even more will lose the crumbs of comfort to which they might have had access. And of course MND is not the only condition that involves rapid degeneration.

One after-thought: the disabled are often painted in the media and by ministers as "on the cadge". Of course you may be able to track down one rogue in a thousand. But the 999 would far rather be fit and healthy, able to live a healthy life and be able, like the Chancellor of the Exchequer, to park in disabled bays illicitly. By contrast, I know one driver with a disabled passenger who will actually refrain from using a blue badge, if the passenger is not disembarking. Integrity is not unknown among the disabled community. And what strange official mind dismisses the professional expertise of those who know best? Well, PIPs roll out in Oxfordshire in June. Perhaps then I'll be saying, "I told you so," - or will it be, "I was wrong"? It would be nice if it were the latter.


  1. quoting part of what you say Michael,"The great thing about Disability Living Allowance was that assessing yourself with your doctor's advice you got access to a non-means-tested benefit quite straightforwardly"
    My Sister's medical practice is in Herts. She has not been fortunate enough to get help from her GP.. Since Christmas she has been unable to walk due to complications caused by a previous operation.
    Following a recent scan, her GP phoned her to say there was nothing they could do and she could expect to get worse as she gets older!
    I rang and told the Practice Manager that I did not think it was right to give older patients this sort of news by telephone. whereupon her GP visited and suggested she go into a Nursing Home rather than stay in her own flat in Sheltered Accommodation where her grandchildren visit regularly and theere is a warden.
    One wonders if he would have preferred to give her an injection of some sort which would hasten her departure from this world.
    She has had to request the aids supplied by the OT dept. herself as the GP did not think to recommend any for her despite the fact that inability to walk had caused severe pressure sores.
    I have become convinced of late that there is an impression out there that people whose bodies have parts which don't work have brains which don't work either. I find it very offensive.Her Medical :Practice had/have no leaflets of any sort to assist their patiennts in knowing where to go to get help.
    Having a PC,I was able to find the contact for Herts Age/UK who have very kindly been to visit her and helped her to fill in an application for Disability Benefit. We hope she is successful as she now has to pay someone to take her washing to the laundry; she also needs someone to clean for her but cannot afford it without some extra money.
    I have to say that I am bitterly disappointed with her Medical Practice. Ours, is excellent.
    After reading what you've said about applications for disability benefit Michael, I can only hope and pray that there will be a Guardian Angel hovering somewhere when her application is assessed.
    If anyone has not seen this film, it is well worth viewing.
    I think it should be compulsory training material for all those who have dealings with the elderly and frail.
    Oh dear, what a rant! but honestly, I have no faith in my Sister's medical practice. The trouble is, one dare not compllain too vociferously because one can get struck off. This happened to a lady I was reading about in the Daily Mail today.

  2. Dear Leafyschroder

    It's really disappointing and disillusioning when the NHS lets people down so badly. It sounds as though your sister has a GP who lacks the compassion which we all hope the caring professions to possess. Giving bad news by 'phone is textbook BAD practice. You're exactly right in what we fear about assessments, and, failing GPs, that we need Guardian Angels. I hope you sister's is there when your sister's application for Disability Benefit succeeds.

    I heard that story about the lady arrested for wanting to see her notes. Incredible but it happened. I've not seen the "Golden Oldies" film. But shall look at it.


    1. Well, I think there wre a host of angels there whe n adecision was made. I have just, a fw minutes ago, had a call from my Siser to say that , not only have they granted her application, but at the higher rate, which Age UK who helped her to fil in the form, did not expect her to get. This will help he so much. She will now be able to have a home help/ carer wich wll change her quality of life hugely.
      I am sooo grateful.

    2. That is such good news. I am so pleased for her - and for you. As we say, down our way, thank you, Lord! And thank you for letting me know, Leafyschroder. I love hearing good news!