Dying man deemed fit to work - an omen for incapacity benefit cuts?

A couple of years ago I went on a date with a guy who declared over dinner that:
"As long as you've got both legs there is no reason why anyone can't run the marathon".
Before we'd even chosen dessert, I realised this wasn't the man for me - he wasn't really going to 'get' the whole Cystic Fibrosis thing.

Yesterday the Government announced further measures against disability benefits, looking to cut back on those who receive Incapacity benefit, or the Employment Support Allowance (ESA) that has replaced it, and move them back into work. My concern is that those who reassess claimants may well turn out to be like my 'Marathon man' date - and just not get the huge impact hidden illnesses have on a person's everyday capacity to function. Lord knows, I never thought there would come a day when I looked at a single flight of stairs with such trepidation, but what is easy for the well person can literally feel like a mountain to climb for the ill.


The Citizens advice bureau released a report in March this year, outlining their concerns surrounding the ESA Work Capability Assessment that assesses what work new claimants of ESA can actually do. It found that a man with Parkinson's who couldn't stand for more than ten minutes, slurred his speech and has significant short-term memory loss was deemed able to work.  A man who had incurable stomach and bowel cancer had been found fit to work as he'd mentioned in his medical that he does try to go for a short walk once a day. He successfully appealed the decision, but he should never have had to go through the stress of needing to do so in the first place.

Both these cases deal with 'hidden' disabilities, where the claimant has all their limbs and can move around, albeit with incredible discomfort. I've talked before about the ESA form in a previous blog, but its over-simplistic form and the short WCA medical assessment seem to place too much focus on whether someone's body can mechanically move, not asking questions on the time involved in medical routines (3-4 hours a day for me), extreme fatigue and pace of deterioration that's at the crux of most 'hidden' illnesses.

David Harker, Chief Executive at Citizens Advice said: "The current test to determine eligibility for ESA isn’t working. Seriously ill and disabled people are being severely let down by the crude approach of the Work Capability Assessment. A much more sophisticated approach is needed, that not only looks at a person’s ability to undertake a certain task on the day of the test, but considers supporting medical evidence and other aspects, such as the variability of a person’s condition and the external barriers they face in finding work."

A report by the Depart of Work and Pensions, found that over a two month period, 68 per cent of new claimants for ESA were found fit to work. Such a high percentage makes me fear that ESA is a benefit that the UK government (past and present) is increasingly loath to support.

Talking about the need to reduce Icapacity benefit in the drive to cut the UK's deficit, George Osbourne said: "It's a choice we all face. It is not a choice we can duck". I'd like to add nor should it be a choice between saving money and forcing seriously ill people back to work due to ill-thought through assessments.

Finding hope through painting

In November last year I had a rubbish week. The paper I wrote a weekly column for finally gave up the struggle to survive and closed down. That same week I was admitted to hospital with another lung infection. It was my third admission that year and would mean that in total for 2009 I'd spent a month and a half in hospital.

Following conversation with doctors on what I could do to try and get better, it was agreed I'd give up work, at least for a while, to see if lots of rest and no stress would help where medicine was failing.

By January, I had lost all track of time. I literally had nothing to get up for in the morning and the whole week started to untether itself - each day had no more purpose than the next. Getting used to being out of work, especially as I didn't know if it would be a permanent state of affairs, was incredibly tough. I'd worked in some form or another since I was 16, and a lot of my personality was focused around independence and feeling a sense of achievement through my job.

It took months to adjust my values so I could still feel like a useful member of society.

And one of the things that really helped was enrolling in an art course. It was a ten week 'creative painting for beginners' class held every Wednesday for two hours in London Bridge. Suddenly Wednesday began to exist as a concept in my week again. And I found I really enjoyed it.

This week was the last session of the course. I'm happier, stronger and interestingly enough my lung function has improved for the first time in 18 months. Of course I can't attribute all of this to an art class, but I did notice that 'Arts on prescription' schemes have been runnning in various counties in the UK, such as Devon and Nottingham, since the mid-noughties. Open to those who are living with long-term illness, depression and eating disorders the aim is to increase self-esteem and reduce visits to doctors through involving patients in art.

Its hard for schemes like these to prove their worth through statistics, but from my own anecdotal experience, giving an ill person something to feel positive about, when most of the news from doctors can feel overwhelmingly negative, can truly perform miracles - reaffirming that life can still be good.

And here's a picture of my painting, its not quite finished but I'm looking forward to hanging it on my wall as a reminder that things can get better.

Budget reaction - disabled benefits overhaul must recognise the unpredicability of serious illness

I'm sure we're all paying attention to the budget, listening out for the sections that will directly affect our lives and those of our families. For those ill enough to be in need of benefits, there may well have been a sense of trepidation ahead of what some of the media is calling the 'Bloodbath Budget'.

So I turn my initial reaction to Disability Living Allowance, a benefit for those with significant disabilities to help them with the extra costs of living and care that their health requires. Chancellor George Osbourne has just announced that by 2013 all those in receipt of DLA will need a medical assessment to determine their continued need for such a benefit.

This sounds positive in some regards. Osbourne claims that the introduction of a medical assessment will make the process of claiming simpler - the current forms to claim disabled benefits are hard to understand and do not show an understanding of how long-term illnesses can affect someone's life. For example the new Employers Support Allowance, replacing Incapacity Benefit, has many tick boxes about whether you can stand up, raise your arm and walk. It fails to ask a single question about the time it takes every day to do medicine, how much extra rest an ill person needs, and the fact that someone's health can dramatically vary from day to day, meaning fixed working hours might be untenable. It is such a complicated form it puts the more vulnerable members of society at risk: those who struggle to read; who don't know how to access the support of charities to help understand the form; who aren't used to writing lengthy arguments at the end of the form to support their claim.

But a word of warning to a Government that wants to introduce medical assessments to long-term illnesses - living with uncertainty is something disabled people learn to do from a young age, and my guess is that MP's will soon learn that an illness is very hard to comprehend in a half hour assessment by a doctor that doesn't know the patient.

For those with degenerative illnesses like CF, diabetes, MS and Parkinson's there is no clear timeline of how long your health can continue to hold out, and your health varies massively from day to day, let alone month to month. For someone with CF, an over-simple doctor's assessment in winter rather than summer could result in a different decision to award DLA. Plus continuing to work might literally put some sufferers in an early grave, when being allowed to 'retire' could dramatically improve a disabled person's quality, and could extend it by years.

So MPs, in advance of 2013 please talk in depth to the disabled and medical community first to get a true understanding of long-term illnesses and how they affect day-to-day life and life expectancy. Ensure that the medical assessors have a deep knowledge of the condition they are assessing (perhaps ask doctors from one specialised medical centre to assess patients from another) and keep in mind that everyone should have a right to protect their long-term health.

If an overhaul of the disabled benefits system weeds out the minority of claimants who are unfairly claiming DLA then it can only be a good thing - as long as it doesn't jeopardise a single claim from someone who truly needs help.

Local variances in diabetes treatment challenges the use of 'National' in NHS

A recent national diabetes audit examining differences in patient care across the UK has revealed that almost 60 per cent of those with diabetes are NOT receiving effective care - despite the fact that 90 per cent of diabetic patients are now meeting healthcare teams at least once a year. Of nine recommended care processes that each diabetic patient should be offered, routine urine tests to detect early stage kidney failure is still the least used test - over a third of patients were NOT offered one. Statistics might seem dry but the fact that there has been a 20 per cent increase since 2003 of diabetics needing kidney dialysis or transplant demonstrates how serious these patient care 'oversights' can be.

These variances in health care across the UK are simply unacceptable. If there is a routine list of tests that should be done on diabetic patients, then a GP should simply print it off and tick them off as he or shes goes along. It doesn't have to be any more complicated than that.

It's interesting to note that the data was compiled by statistics offered by Patient Care Trusts (PCT). For those of you who don't know, a PCT is a local body operating within or across a few boroughs that decide how its local 'money pot' should be spent. I've had enough dealings with my PCT to think of a more appropriate four letter word to represent the 'C' in the acronym. No doubt I'll mention the PCT again in my blog, but in my opinion they have more power then they should have and make random monetary decisions about treatment which is never based on what is best for a patient. And often their money saving initiatives are short sighted: it's more economical to keep a patients diabetes under control then deal with the costly consequences such as dialysis and complicated operations.

So, if you have diabetes or any long term illness then do your research. Get in touch with the charity that represents your illness, talk to other patients on health forums and go to your GP armed with facts. If it was me I'd print out the nine key tests that I need, ask for them to be done and insist on a referral to a hospital specialist team if my GP wasn't able to do them.

Until changes are made in the NHS to provide truly universal care, then knowledge really is power when it comes to managing your long-term health.

Differing death rates should just remind us we're all human

Throughout Malcolm Gladwell's 2008 book Outliers, he repeatedly mentions the 10,000 hours rule. Namely that if you want to be a success at something you need to practice that discipline for about 10,000 hours before you can call yourself an expert. A rule that makes us realise that today's Guardian story, about how death rates from the same routine operation differ across the UK, should really be common sense.

Taking data from surgeons working in 116 hospital trusts, it has found that the smaller the hospital the higher the mortality rate from planned operations. It focuses its story on planned vascular surgery for abdominal aortic aneurysm, otherwise known as an AAA operation, and found that death rates from this surgery vary from under 2 per cent in some hospitals to over 10 per cent in 10 of the hospitals surveyed.

You can read more about it on the Guardian's site, but one interesting quote from the piece is: "Some leading surgeons believe that for best results, a hospital needs to carry out at least 50 AAA operations a year. Yet very many hospitals across the UK see less than 20 cases a year. Dartford and Gravesham had just five in three years." It’s logical that if a hospital team has had more practice at something than they are likely to better at it. Perhaps the only reason we are shocked is because it shows that our life is literally in the hands of a surgeon - and we hate to think that surgeons, just like all other people working in different, less life-dependent industries, will be good at some things and not so good at others.

My family learnt this lesson well when I was only two years old. I had to have an operation on my leg. The operation date arrived, my parents took me to hospital and listened to the surgeon as he discussed what he was going to do to make my leg work properly again. After listening to him using phrases such as 'We might make it worse', 'Not sure if I can really do much to improve things' my parents decided he wasn't going to 'have a go' at my legs. They packed my stuff and walked out of the hospital with me, just a few hours before my operation was due. Thank God because the great surgeon who did eventually make my legs work again did so in a completely different manner to what the rubbish surgeon had suggested!

So what should be done? Firstly, do have respect for your hospital team, but if you're not convinced by a procedure or a hospital you are allowed to say - it is your body, you have to live with the results.

Secondly, the Guardian article suggested closing down smaller hospitals, but perhaps another route could be ‘shared care’ - something I again have experience of. When I was a teenager growing up with Cystic Fibrosis I regularly attended a clinic at my local Kingston hospital but I went for a biannual consultation at the world-renowned Brompton Hospital in London. I literally got the best of both worlds - a great local team that was conveniently located and knew me really well combined with new ideas and the latest research suggestions from Brompton hospital. In short, each hospital got to do what they were best at. Perhaps a more flexible hospital system of ‘shared care’ might make operations more uniformly safe across the UK while safeguarding local hospitals that we rely so much upon?