The right model for killing yourself

"Martin" is 46 and has locked in syndrome He's asking the courts to clarify the law so that doctors and other medical staff who might help him end his life would not  be prosecuted.

This is an extension of Debbie Purdy's case, from two years ago. Purdy successfully argued in court that it was a breach of her human rights not to know if her husband would be prosecuted for assisting her suicide if he accompanied her to a clinic in a country where assisted suicide is legal.

"Martin's" case extends this to doctors and other medical staff, rather than lay-people. His wife has accepted his decision, but does not feel able to assist him.

At least 10% of suicides in the UK are by people with a chronic or terminal illness, and coroners believe that people are increasingly killing themselves at a younger age rather than wait until they are in severe pain. Some coroners avoid probing into what they suspect might be a case of assisted suicide, to avoid causing problems for those left behind.

So why do all these people with long-term illnesses feel that the appropriate response to their circumstances is to kill themselves? (Either with or without help). Opinions, inevitably, differ.

Some argue that the decision is made because the condition - the illness, the disability, whatever - has become too much to bear. Others say that these feelings are often because the individual has not had the chance to live as independent a life as possible within society at large.

The individual's condition on one side and society on the other. That sounds very familiar. And yes, it's our old friends the medical and social models of disability again.

Which is more important in an someone's decision whether they want to live or die?  The way their physical disability affects them as an individual, or how easy it is for disabled people to be part of mainstream society?

Just to be upfront, I have no intention (in the foreseeable future) of seeking assisted suicide. But as I've told you in a couple of posts recently, I've been having major problems getting out because of physical problems. At the moment, the accessibility or otherwise of society is kind of irrelevant to me, and my physical impairments are totally primary. At other times, or for other people, the physical problems may be secondary to accessibility, housing problems or employment discrimination.

So overall, I think sometimes the medical model is the right one and sometimes the social model. Or, at least, there's a continuum. At one end is "pure" medical model thinking, at the other end is "pure" social model thinking. Most of us are somewhere in the middle, and we move back and forward along the continuum depending on circumstances. (It's made of nice slidey material. Makes it easy.)

The vast majority of us could never kill ourselves, in any circumstances. And if someone is considering it, whether that decision is rational or irrational is a whole other packet of Jaffa cakes. For those few who have decided to seek assisted suicide though, reasons differ. And that fact must be acknowledged by the disability community.

Not going out

For the last couple of months, I've been having real problems in getting out. Not because of agoraphobia: I'd love to get out. Because of physical difficulties, and complete and utter lack of spoons. I just haven't had the energy to go out.

I used to be - well, not exactly a party animal (though I've had my moments!), but I went out a fair bit. Part of it was day-to-day getting out, of the going-to-the-shops, paying-the-bills type. And of course work, back when I was still able. In these teched-up days, the internet offers alternatives to much of that kind of going out, for those who want them.

But part of it was the joyous, wonderful kind of going out: meeting your mates, going to the pub, going to gigs. Falling in love with the band who were supporting the one you'd actually gone to see. Your table in the pub laughing so loudly that the landlord has to ask you to quieten down. An evening at the fair, throwing balls at coconuts to win teddy bears.

It's that kind of going out I miss so much. I have wonderful friends I'm in contact with online, by text or by phone: but it's just not the same as when I meet up with them in real life.

And even the boring, everyday kind of going out means you're still part of the community at large. You're still "normal" (whatever the hell that means!) rather than stuck permanently indoors.

So I'm still hoping I'll beat these damn recurrent infections, and get enough energy back to do some going out again. Because this not going out is really getting me down.

Revolting disabled people

Over the last week, we have all been horrified by the scenes of violence and criminality shown in Tottenham, Ealing, Hackney, Croydon in the London area, as well as further afield in England, in cities including Manchester, Birmingham, Nottingham and Bristol.

Those responsible are now being arrested and dealt with through the justice system. Everyone, and his dog in many cases, has spouted forth his or her opinion of the causes of the rioting. One factor frequently cited by the chattering classes (much like myself, you might say. And probably rightly) is the alienation of young people, and of the "underclass" that has developed under this and other governments, brought to a head by the savage programme of cuts introduced since the last General Election.

This may be true. The official inquiry into the causes of the rioting might look at such things - I hope so.

But there are other groups, equally alienated by their treatment by successive governments, and equally if not more affected by government cuts. Why weren't they out there rioting, looting, and setting fire to things?

They? I mean us. Disabled people.

Yes, things are better than they were in relation to accessibility, job opportunities and so on, but they're not improving nearly fast enough. Disability hate crime is still a regular occurrence and not taken nearly seriously enough. And we're facing frightening, ideologically motivated cuts to our benefits. Why shouldn't we be out there rioting?

Well, first of all, there's the practicalities of the matter. Few of the shops being looted looked very wheelchair accessible - through the windows at least. And wouldn't the glass puncture the tyres? For those of us who have disabilities that are also illnesses, it's difficult to do anything spontaneous like that. And what about if you need a PA to get out?

Then there's the age profile of the rioters. Overwhelmingly, those charged with riot-related offences are young, about 3/4 being under 25. Disabled people, on the other hand, tend to be older than the general population: although of course there are disabled children and young people, many disabilities only come on with age, so the number of disabled people in the population increases with age. With age comes...well, let's call it wisdom. Or maybe it's apathy. Something like that, anyway.

I think all of us, even living in our own homes rather than in care or nursing homes, undergo a kind of "institutionalisation" - to be placid and well-behaved little crips. It's hard to break out of that, to fight against it either physically or with your words.

This, along with the physical and logistic problems, is why it was such an impressive achievement when thousands of disabled people participated in the Hardest Hit march in May, protesting against cuts to disability benefits and services. It's a real shame that their strength and commitment got so little media coverage, in comparison to that given to a few trouble-making idiots on the TUC March For The Alternative.

So. Why weren't disabled people rioting? Some of the rioters probably were disabled of course, as not all disabilities are visible...but in general?

For most of us, I imagine it's because, the same as me, we know what's right and what's not. In other cases, it's just too damn difficult! Maybe some people don't feel national politics affect them?

A whole range of reasons, then. Just like there's a whole range of disabled people. And probably, like there's a whole range of reasons for what the rioters did.

Damn. Wouldn't it have been easy if there was one nice easy knee-jerk cause and solution?

"I'm better"

For the last month or so, I've really not been well. A succession of UTIs, along with the increase in MS symptoms they bring with them. Antibiotics would stop the symptoms of the infection during the course: but then, soon after, it would return.

Then, at the stage when my wee looked like creosote and smelt like something had died in it, I could barely stand, and was really just hoping I would die quickly...I discovered (/my doctor prescribed) nitrofurantoin. This seems to be the latest thing for persistent UTIs, as a friend has just been given it for the same thing. And you know the best thing? It works. Well, so far at least.

So, it seems I no longer have a UTI. I'm better.

Better.

What does that word mean to someone with a long-term illness? I'm never going to be really "better". I have a progressive condition. I'll always have dreadful fatigue. I'll always have cognitive impairment, and all my other symptoms. I can take tablets or injections to help with some things, or work around them, but they're always going to be there.

It seems to me we redefine what "better" means, for us, in our personal circumstances. I'm better because my UTI has gone away: in terms of my symptoms, I'm less worse.

Similarly, we redefine the words describing how we are. I can say "Yeah I'm good", even though I'm in pain and exhausted, because for me, in my terms of reference, that's good.

So...yeah, I'm better. Which is great!

MS research roundup August 2011

First this month, I have to apologise for the complete lack of posts since the last roundup. I've been a bit MSified - and in the less bad bits, I've been attempting to do some "real work". I have told myself off severely, and promise I will blog more this month. Honest.

My poorliness in July also meant that I wasn't keeping my usual eagle eye on what research results were being reported. Sorry and all for the low number of results I discuss in this post.

So on to the research...and more evidence for a link between MS and current vitamin D levels. British researchers compared average vitamin D levels among people in Scotland with MS, and their admission to hospital for things like relapses and infections. They found that the two factors were linked: hospital admissions were highest in spring (April-June) when vitamin D levels were lowest.

This suggests that vitamin D levels are associated with whatever it is that causes people with MS to be admitted to hospital. We already know that vitamin D affects the immune system: being deficient can increase the risk of infections and probably relapses.

Australian researchers have found that past infection with Epstein-Barr virus (EBV), the virus which causes glandular fever (mononucleosis) can combine with genetic variations to increase the risk of developing MS by up to 20 times. There was no evidence that a current infection with EBV could bring on MS.

Not research, but a discussion...a group of researchers held a session on cognitive (thinking) dysfunction in MS, and the problems of developing longitudinal tests and standardising data for the effects of MS on the mind. The researchers gave the contrasting example of Alzheimer's disease: the cognitive decline caused by that disease is faster and more certain than in MS, where cognitive decline affects about 6% of patients each year.

As far back as 2002, researchers published a consensus paper agreeing a battery of tests to be used to measure cognitive decline in people with MS. According to this discussion, it is time to update the consensus to 2011 standards.

Disappointingly for those of us who have followed its progress, the UK National Institute for Health and Clinical Excellence (NICE) has issued a draft recommendation that Gilenya (fingolimod) should not be prescribed on the NHS. This is because NICE feel that it has not been trialled against the correct drugs: it has been compared with a placebo and with Avonex, while NICE argue that it should be compared with other beta interferons as well as Avonex, and with Tysabri.

Gilenya is licensed for adults with highly active relapsing-remitting MS, who have had either one relapse in a year despite being treated with beta interferons, or two disabling relapses regardless of their treatment. The evidence Novartis submitted to NICE mainly dealt with a subset of the first of these two groups.

People with MS, healthcare professionals and others are invited to comment on this decision. However, it really sounds to me like the ball is in Novartis's court, to submit further trial evidence.

One interesting study that reported recently was carried out by an international group of researchers. They found that health-related quality of life, depression, fatigue and thinking all improved when people took Gilenya. However again the comparison was with a placebo, not with an existing treatment.

Finally for this month, exciting news of an upcoming major stem cell trial. British researchers plan to collect participants' own stem cells from their bone marrow, grow them in the laboratory, then reinject them into their blood. The cells will then make their way to the brain where it is hoped they will repair the damage done by MS.

The research is part-funded by the MS Society, which is concerned by the availability of unproven stem cell treatments. At present, there are no proven stem cell treatments, but many people with MS have been attracted to overseas stem cell clinics offering expensive "cures".

So, that's it for this month. See you in September!