A tale of two paradoxes

Two news stories have struck me this week. 

One is the extraordinary ineptness of the contractor employed to carry out tests for PIPs (Personal Independence Payments) for disabled people in the North East, who has hired rooms in a luxury spa owned by multi-millionaire, Duncan Bannatyne, for the purpose. I can imagine few things worse than being pushed in my wheelchair through a place thronging with healthy and wealthy spa-goers padding around in fluffy slippers and snow-white bath robes on their way to a massage, a manicure, and a meal of coleslaw and prosciutto, or working off their excess weight on cross-trainers, or showing off their finely toned bodies between the swimming pool and the sauna. It is hard to imagine a more inappropriate venue for what is already a humiliating enough experience - an assessment designed to save the government £1.3bn by 2020, by cutting the number of people who receive DLA (Disability Living Allowance, being replaced by PIPs) and in particular the mobility element which gave disabled people freedom to get out and about. 

It is true that supporting the disabled costs us all a lot of money. It's also true that the introduction of PIPs has already caused a lot of personal harm and hardship. "PIP assessments have so far led to Motability cars being taken away from 50,000 disabled people.  
When the new assessments were announced to replace the Disability Living Allowance (DLA) in 2016, it was estimated that entitlements would be cut by up to £150 a week for more than half a million people." See Huffington Post article.  See Huffington Post article. The irony is that the sum result of a lot of misery for a section of the population will in the end barely dent our social services bill a jot, if at all.

I do realise that a while ago I made a resolution not to whinge so much. But really! Sometimes it all gets too much. So here's my second one. It's about Theresa May's much touted Florence speech. I'm not entirely clear why her minders chose to stage it there. I gather it might have been because of the trading/banking history of the city, or it might have been some sort of convoluted symbolism to do with the Renaissance. Here she was, in the tradition of Michelangelo and the Medicis, launching a second Renaissance in Europe, Mrs May's Renaissance. From the news reports that seems to have been the gist of her message. Brexit is not an end; it's a beginning. It's not a divorce; it's a new glorious "partnership". There were precious few details of what the partnership would look like, just like nothing we had seen before and we need some more time to think about it. What must puzzle objective observers is, then what Brexit was all about. In the referendum campaign we were constantly told that it was about breaking off with the EU, having done with it, breaking free from its shackles. Which sounded very much like a divorce, a very acrimonious one at that. It sounded like "a plague on all your 27 houses".

"Brexit," Mrs May intoned, like a mantra, "is Brexit." Now it appears, "Brexit is Brentrance." Whether Europe will allow us to have our cake and eat it remains to be seen.

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.

The Paralympic legacy

There’s been lots of talk and print about the 2012 “legacy” – from the problems of picking a sports’ personality of 2012 and what would happen to the Olympic park in East London to the lessons for the economy and the implications for the Prime Minister’s position.  He bizarrely, I noticed, used the success of both Games as an argument against Scottish independence (“you showed us what we really are – one United Kingdom, one flag, one celebration…”).  However that’s not the real legacy issue.  It’s not even whether the tubes will run on time; it’s not whether there’ll be a baby-boom in nine months’ time, or whether children will keep asking their parents to organise their own Olympic Games. 

For me it’s much more profound and systemic than those things.

We applied for both Olympic and Paralympic events.  As it turned out, I am very glad I didn’t get tickets for the Olympics, but “only” for the Paralympics.  Being disabled myself I thought it would be interesting.  In fact it was intensely moving.  We went to Eton Dorney to see the rowing heats, and the following day we made it to Greenwich to watch the Equestrian event.  After that I recorded the television coverage so that I could fast forward through all those annoying and too frequent adverts interrupting well-informed analysis from a number of unfamiliar commentators.  Meantime I reflected on what might be the much touted legacy of the Games, besides medals, golden post-boxes and postage stamps, and a couple of smart sports venues. 

Since we are such a media-controlled society, let’s start there.  It was striking how much demand there was for every venue, and how blanket coverage of every event could be sustained.  Even women’s football which started slowly had gained momentum and full stadiums by the end, proving it is an exciting competitive spectacle.  And then there were a myriad of rarely seen events, from archery to weight-lifting, athletics to swimming, cycling to team sports, both able-bodied and disabled.  To pick out any would be invidious, but who could forget the thrill of BMX racing or the dodgem-like aggression of wheelchair rugby?  Or fail to be excited by stars like Sarah Storey and David Weir?  There was an astonishing variety of events and stars who captured the public imagination.  What an opportunity – for reasonably priced television programming, which of course is a two-way street, providing accessible entertainment and generating further interest in the sports.  Why need it wait for the infrequent mega-events?  And while I’m on the subject, how refreshing it was to have fresh faces on our screens unpretentiously commenting on events they understood from the inside!

There’s a danger, it seems to me, of investing in élitism at the expense of “the rest”.  Many of the medal winners would include Lottery funding in their thanks.  It clearly contributed to their success, but lest politicians congratulate themselves that this success proves how well we provide for the disabled in general they should consider what happens to the disabled who aren’t elite athletes.  They should know that the disabled community lives in fear of their fate when their Disability Living Allowance is soon replaced with the new Personal Independence Payment, and when their benefits are reassessed.  They should know that the disabled who are not out achieving remarkable things in sports arenas are not therefore lay-abouts and scroungers.  Nevertheless it is to be hoped that the high-achievers will have dispelled the myth once and for all that disability renders you less of a person, with less dignity and worthy of less respect. 

This recognition has implications for both ends of life.  Isn’t it time to reassess our attitude to foetuses who have some disability or neurological condition?  At the moment we presume that termination is the desirable option.  Now we know beyond doubt that in abortion we are ending a life of unforeseen potential.  And, at the other end, we should also know that broken bodies of any age are not merely fit for the scrapheap; they have the same spark of humanity as the most perfect specimens.  They are worth fighting for because even the least has value.

© The Guardian

 Another legacy I trust will remain from the Paralympics is the spirit of sport, by which I mean the respect and empathy towards each other shown by the competitors.  Anyone who saw it will long remember Ellie Simmonds embracing her victorious American “rival”, Victoria Arlen, across the lane ropes after she’d come second in the 100m freestyle.  Conversely one couldn’t fail to be moved by Jochen Wollmert’s immediate comforting of the defeated and distraught Will Bayley after their table tennis final, in remarkable spontaneous sympathy.  Spontaneity and honesty was also a mark of the athletes’ interviews, whether “gutted” with disappointment or elated by achievement.  We could do with more of that – not only in sports but also in other areas of public life:  less ear-tickling, more heart-felt saying it as it is.  Less political calculation, more paralympian honesty.  The Paralympics could leave us a better society.  Will we accept their legacy, or leave it unclaimed?

The disabled to get their Pips squeezed

from Uffington Post

I receive Disability Living Allowance, free of tax and not means-tested, which consists of two components: a) mobility, and b) personal care. At the moment I receive the maximum (of 3) bands for mobility, as I can't walk unaided or drive. That allowance is all used by Motability from whom we lease our car, which we have in order to carry my wheelchair, rollator, and all the clobber associated with my PLS. In due course, when I can no longer manage the passenger seat, it will go towards a roll-on-roll-off version. I have only the middle band of the personal care component as I can still feed myself, wash and toilet myself (given some preparatory help from Jane. Actually I can't pull up and fasten my trousers once they're down!).  The DLA is a great help, as it compensates for a number of extra expenses incurred by my disabled state.

I was advised to apply for it by my physio when my MND really made itself felt. The form is not excessively complex, but asks quite specific questions. It relies on self-assessment and therefore honesty (although I seem to remember having to give details of my health professionals such as doctors, with permission for the Department of Work and Pensions to contact them for verification).

The Government has plans to replace this benign compensation for disability with a new idea, PIPs, Personal Independence Payments, with the aim of cutting the cost (approx. £12 billion and rising) by up to £2.24 billion. It will mean reassessing 2 million claimants with the aim (or hope) of pruning out 500,000. Iain Duncan-Smith, Secretary of State for Work and Pensions, is the man entrusted with handling this sensitive issue. The PM must hope he'll present it with more skill then the Budget fiasco. 

His first attempt, to the Torygraph, as reported in the Huffington Post, is a curate's egg.

"Duncan Smith told the Daily Telegraph: 'We are creating a new benefit, because the last benefit grew by something like 30% in the past few years. It's been rising well ahead of any other gauge you might make about illness, sickness, disability or for that matter, general trends in society.

"'A lot of that is down to the way the benefit was structured so that it was very loosely defined. Second thing was that in the assessment, lots of people weren't actually seen. Third problem was lifetime awards. Something like 70% had lifetime awards, (which) meant that once they got it you never looked at them again. They were just allowed to fester.'

"Duncan Smith defended the reforms which could see people without limbs, including ex-servicemen and women, no longer entitled to disability benefits as their everyday mobility is not undermined by their prosthetic limbs.

"He told the Daily Telegraph: 'It's not like incapacity benefit, it's not a statement of sickness. It is a gauge of your capability. In other words, "Do you need care, do you need support to get around?". Those are the two things that are measured. Not, "You have lost a limb".'

"Ministers are consulting on the new eligibility criteria for the disability benefit system which will be announced in the autumn."

Much of that seems to me reasonable. It's reasonable to want to keep a check on the validity of the initial claims; it's reasonable to keep a weather-eye on their continuing validity. It's true that medical technology can restore people to independent living and it's reasonable that the cost of that technology should be offset by savings on DLA. But there will be additional costs in the task of 2 million reassessments (carried out by GPs or more probably specially employed assessors). And to my recollection the benefit was not "very loosely defined"; in fact the questions were very specific, such as how far could I walk unaided, and could I dress myself, could I cook for myself, shower unaided etc. What I'm dubious about is whether my GP or consultant were ever asked to confirm my answers. (It may be that MND is recognised as a severely disabling condition.) 

I am, every year, at the same time as being informed about the monthly rate, told that I must report any change which might affect my award. It wouldn't be very hard for the DWP to contact my GP to check, if they wanted to. It would probably be cheaper to do that across the board than to set up an entirely new system with a large number of new assessors. 

Bishop: "I'm afraid you've got a bad egg, Mr Jones";
Curate: "Oh, no, my Lord, I assure you that parts of it are excellent!"
"True Humility" by George du Maurier, originally published in Punch, 1895.

I suppose the most rotten part of the curate's egg is the sentence, "They were just allowed to fester." I'm sorry, I'm sure, that the minister regards allowances such as mine as a running sore, a festering wound in the body politic. I can assure him that most disabled people would prefer not to be a burden on the state; in fact they'd prefer to be sound in wind and limb. But it's quite nice to know we're not forgotten and that someone once cared enough to set up a system which, even if it can't erase, can at least ease the experience of disability. 

I sincerely hope that the new PIPs have the same humanity at their heart. (I tried to find pictures of IDS with disabled people, in vain - I wonder why - with the exception of the one above; at least I'm assuming the seated man is disabled - as it's from the Royal British Legion's website. However I did find this one from My Marilyn blogspot, which satirizes my hope....) Will its scepticism proves unfounded? Will the Secretary of State turn out to have the heart of Florence Nightingale?

Local scenes and global perspectives 1

On Thursday evening, I watched the second part of Comic Relief: Famous, rich and in the slums. Again it was touching and moving. Again it moved me to tears - and hopefully to action. It certainly moved me to reflection. More of that anon.

Not mine! From Wikipedia

Meanwhile it's been quite a week. It was framed by visits from two friends who have had cancer and amazingly better, one who's had brilliant chemo and the other who's not had treatment. Those were two good news stories. Another small one was when my physio, Lesley, visited on Monday and checked me over, and gave me the thumbs-up. She reckoned I was no worse than four months ago - just need to keep an eye on my posture. Good news. On Tuesday it was back to the dentist to decide what to do about the troublesome molar (or perhaps premolar). Whatever treatment (extraction or root filling) would require visits to Oxford, as the little local clinic doesn't have sufficient back-up if complications arise - which is likely since it's been pushed sideways. So I've opted to have it out and be done with it. We now await the summons from the hospital, hopefully before too long as the antibiotics which have held the infection at bay ran out at the weekend.

On Wednesday we had our joint Oxfordshire/South Bucks MNDA meeting in Thame about benefits, like DLA, Carers' and Attendance Allowance. A really good service provided by the Department of Work & Pensions, this, their outreach: we certainly learned things we didn't know before, which were pleasant surprises. I asked the chap about the future of the benefits. The answer was, if I got it right, that from 2013 all the disability allowances will stop being self-assessed and will be assessed by doctors employed by the DWP. The idea must be drastically to cut the number of disabled claimants in order to justify the expense of employing all those medics, I reckon. They want to catch the abusers of the system, such as the woman who claimed and then played golf... apparently. I doubt whether there are that many of them, but I may be wrong.

My genuinely disabled artist friend, Katherine Araniello, pointed out an article by Lucy Mangan in the Weekend Guardian, We're in a right state, in which she reflects on the experience of being temporarily mildly disabled. She describes vividly what it's like (similar, I thought, to early MND) and the unexpected acts of kindness she keeps experiencing from individuals. "It makes me wonder, though: what happens to all this kindness and compassion when we move beyond the individual level? It clearly dissipates at some point. I'm fascinated, truly, by the fact that a government is elected by people and made up of people, yet so lacks the empathy or sympathy of the average person that it can blithely cut the benefits that mitigate the sociocultural disadvantages of disability – the enforced isolation, the extra expense (of minicabs, of having to go to the most accessible rather than the cheapest shops) – and reformulate the rules of qualifying so that it seems every applicant is assumed to be a fraud until proven otherwise."  


I hadn't read that by Thursday when I went to the Churchill Hospital to talk to trainee clergy about my experience on both sides of degenerative illness and disability, or I might have quoted it to them. As I might have foreseen, I broke down talking about the church family and especially my own family's unconditional love, but I hope, nonetheless, that it gave them some insight to what it's like. Of course they asked some tricky questions, like what's the most helpful approach to people like me - to which the answer is to notice us as people, not to come up with the 'right words'. Rachel Marsden, the MND Centre archangel, also spoke and mentioned some of the things not to say, such as "I know how you feel" (No, you don't) and "Something good will come out of this" (It may not, and anyway my problem is now). Sadly, not many of them bought my books! Recession-hit ordinands? After us there was a panel of hospital chaplains, who I felt were less than clear about euthanasia, with one exception - though admittedly they were speaking pastorally rather than ethically. Perhaps they should watch Katharine Araniello's films and listen to her experience. Her latest one is sardonically funny and yet deeply serious: "'Follow Me on My Journey To Die' follows Gem, a flamboyant artist whose plan to commit suicide captures the attention of the masses. Not only does she have Turner Prize committee in her sway but also the London fashion scene which has been hit with a euthanasia craze."Katherine Araniello's website

Katherine Araniello performing

And so with visitors on Friday and breaking news from Japan, I sank exhausted to watch an afternoon of rugby, which certainly woke me up. In fact it was an extraordinary weekend of internationals: Italy beating France by a single point in Rome, Wales beating Ireland with a try which contravened Rule 19.2 after a quick line-out with a new ball (!), England beating Scotland after a dubious sin-binning, a fox on the pitch and the referee injured with a torn calf muscle! It looks as though England are on course for the Grand Slam (beating all the other teams in the 6 Nations) unless Ireland pull off a miracle in Dublin on Saturday, two days after St Patrick's Day.

Manchester and music

After Grace's funeral, we spent the night with Paul and Penny, and our lovely granddaughters, in Manchester. The M6 is a pain to negotiate twice in a day, and we don't often get up to the north-west. It seemed too good an opportunity to miss - and we've not seen their woodburner yet. And so we spent a mellow evening together.

Our departure was somewhat tardier than the family's. Once home Jane did her stint of duty at Cornerstone, and then in the evening we were out to the Oxfordshire MND Association social at the Bear and Ragged Staff in Cumnor. As well as the  visitors and friends, there was David despite his MND has just completed and gained his Master's, as well, he tells me, running a profitable 'herb' farm! Moira was there too, who has the same slow type as me. Times together like this are important, even if the cold weather makes our muscles seize up.

Friday was car exchange day. I must say Scott of Whitequay Seat in Newbury did very well for us. Highly recommended. Jane really enjoys driving the Altea XL, nice and smooth, with features like headlights that point round corners! Anyway, I'm very grateful for the Disability Allowance.

We were out again in the evening to go to Stanford for a concert given by Lillian Boutté in memory of our friend Richard Speed. It was through him that she first came to give a concert in Stanford Church about 20 years ago and began working with children in local schools. She sings jazz and is the official New Orleans ambassador for jazz. She's married to Thomas, a witty German saxophone and clarinet player. The musicians had some difficulty in making it through the snow but it was worth the wait. As you can see, she is full of life and full of faith.