Thursday, November 08, 2012

Re-introducing 'Dr knows best'?

About eight years ago, not long after being diagnosed with Ehlers Danlos Syndrome and starting the re-classification process from having been labelled as 'attention seeking, malingering' patient towards 'actual genetic disorder oops we screwed up there' patient, I was seen by a surgeon who wanted to force me to have surgery to 'fix' my hips. Whilst this was a kindly man who genuinely believed he was doing his best for his patient it made an already stressful and traumatic time in my life far more frightening than it needed to be. The idea that benefits conditionality could be added to the pressure I was facing in that situation sends shivers down my spine, even all these years on. Then refusing surgery meant that I lost access to physiotherapy and any non surgical supportive treatments from the hospital which meant I was left to learn to deal with my newly diagnosed genetic disorder entirely alone, but as I knew the proposed surgery would leave me unable ever to walk or independently mobilise again, going it alone was making the best of a bad situation. Had benefits conditionality been applicable as recent government proposals indicate may become the case then I would have had no choice but to go through surgery which would have vastly increased my pain and disability.

It may or may not seem reasonable to you to restrict access to cash benefits in the case of addiction - there are various arguments for and against, and it is likely to be viewed as a popular policy by politicians. But, hidden within this idea is something far more sinister - that this policy could be rolled out to other conditions. In fact officals were keen to stress that "once the principle was introduced into the benefits system it could be expanded to other ailments" an idea those of us with existing 'ailments' find terrifying. It could mean that people are forced to participate in 'treatment' processes which would be hugely damaging to their health because the alternative means conditionality on the benefits they rely upon to feed and house themselves.

What appears on the surface to be a politically attractive policy playing beautifully in the pages of the Daily Mail has dangerous implications for us all. It is only a couple of generations ago that young women were routinely hospitalised against their will for behaviours we now understand and empathise with. Those treatments supposedly in their best interests such as Electric Shock Therapy or leucotomy are now either discredited or used only in a tiny minority of cases where no other option exists. My great aunt, who is still living, was forced to have a leucotomy when she was a young woman suffering from what we would know now as post natal depression. Although she was undoubtedly mentally very unwell, who knows what her potential recovery or decades of post leucotomy life would have been like had she not been forced to have such a 'treatment' deemed to be in her best interests. Multiple Sclerosis was commonly known as the 'hysterics disease' until as recently as the 1950's when modern scanning and research techniques proved a biological cause. It would be easy to dismiss these as mistakes from a previous time, but the attitude towards patients diagnosed with ME is remarkably similar in the general disdain and lack of empathy displayed towards such patients by the medical profession and wider society. The 'treatment of choice' these days for ME is graded exercise and therapy, based on the presumption that ME must be a psychiatric illness. It seems that lessons about MS have been entirely forgotten in the contemporary attitudes towards ME.

My own memories of battling with that surgeon still haunt me. Like all surgeons his primary role was to operate and to 'fix' people and so I find it difficult to blame him for thinking surgery would make me better, but his inability to accept that the surgery he proposed would be utterly disastrous for someone with Ehlers Danlos Syndrome was the real problem. Despite knowing absolutely nothing about Ehlers Danlos Syndrome he proposed a surgery to break both my hips and re-set them in a 'better' position. My protestations that would be incredibly dangerous and pointless for someone with a connective tissue disorder were brushed away with the insistence that it wouldn't affect any of my soft tissue because he was only going to break bones.

Living successfully with a disability or chronic health condition is only possible when one learns to be independent, to have control and autonomy over your life. It is extremely challenging to do that both psychologically and practically because services essential to that independence such as social care or long term psychological support are impossible for most people to obtain. To add to this burden by removing the most fundamental right we all have, to have control over what happens to our own bodies, takes society into a dark and dangerous place, led there by stigmatisation and resentment of people who 'just don't know what's good for them' and an outdated, paternalistic idea of 'doctor knows best'.

My Doctor didn't know what was best, despite his best intentions. Fortunately I was well informed and stubborn enough to stand up to his best intentions, holding out for my own. That battle and all the others it created meant it took months away from what I needed to focus on, which was learning how to cope and to live life with the level of disability I had. If my ability to feed and shelter myself had also been conditional upon what my doctor thought best for me I would not have been able to make that choice for myself, or to avoid surgery which would, quite literally, have crippled me for life. Are we really going to allow society's disdain for addicts to take us back decades to a time when Doctors knew best and give them the power to act regardless of consent?


15 comments:

Anonymous said...

Informed consent is no longer informed consent when there is coercive pressure (or at least, that's what I've been taught in every research ethics and good clinical practice course I've been on). So if this goes ahead you may as well not bother with asking patient to consent to procedures since it makes a mockery of the whole process.

I do hope we can stop this from happening.

misspiggy said...

Very chilling and timely piece. I'm so sorry for what you went through.

Hopefully all the talk about coercive treatment is just flim flam designed to suggest a) that appropriate treatment is available when it isn't, and b) that addicts and benefit scroungers deserve to live in poverty because they're turning down treatment.

Obviously these suggestions are very bad and should be challenged. But I'm hoping that government statements on these issues are simply more of the war on welfare recipients rather than serious policy, which would be far worse.

Any chance a version of this excellent piece could make it onto CIF, do you think?

Ron Graves said...

From what I've read of this, it seems to relate to addicts in the main.

And it would need a radical change in the law of patient confidentiality and also in the patient's right to refuse any treatment they consider harmful. In my case, for example, even though I'm in a high-risk group, I won't take statins as they trigger rhabdomyolysis within days - how would that be viewed?

There can never be, as long as the patient is conscious and compos mentis, any justification, or legal foundation, for compulsory medication.

Change that and you're but a very short step from enforced euthanasia.

Mary said...

I don't see how they're making the leap from addictions to other conditions.

For addictions, it sort-of makes sense. I haven't known many addicts and am loath to claim to have "met a man" but anyone can see how, for people struggling against addiction, it must be very hard to once a month get a chunk of money and be expected to somehow resist the temptation to go and blow it all on the drug of choice rather than on the things it's meant for, thus worsening/prolonging their illness.

But I've yet to hear of a person struggling with back pain who on the day their DLA comes in is unable to resist spending it all on making their back pain worse...

Also, isn't inability to properly manage your money (like buying drugs/computer games/sweeties instead of paying bills and buying food) a social care issue rather than a health issue?

DavidG said...

Ron: You need to check what's being proposed for the Work Programme and Workfare, it's pretty much an automatic sanction for refusing to do what is recommended by an advisor, and for ESA recipients in WRAG there is a really possibility of things like exercise or physio being recommended. For someone with EDS, or ME, standard physio is potentially damaging - a lot of physio focusses on restoring range of motion, but as a bendy I already have greater than normal range of motion due to lax ligaments and wrongly prescribed exercise could make that situation worse not better, but is a half-trained 'advisor' going to understand the problem? I might be able to sort it out on appeal, but in the meantime my income would be sanctioned.

(This is one of the reasons I was so glad my referral to a WRAG training provider fell into a black hole).

DavidG said...

Just to emphasize how resistant to admitting a problem the medical profession can be, Professor Simon Wessely, the high priest of treating ME as a hysterical psychiatric illness, was this week awarded the Maddox Prize, for "standing up for science in the face of hostility" And just emphasize how much this flies in the face of the evidence, the World Health Organization classifies ME as a neurological illness.

Ron Graves said...

@DavidG

Can you cite your source(s), with links if possible, for the assertions in your 3.37 post, please.

Thanks.

Anonymous said...

Thereis no informed in it!
They told my mother to have a 'little operation' (Hysterectomy) years ago - She refused. They dont say that that causes vaginal vault prolapse - they PRACTICE these doctors - they dont always fix things

They say one thing before the op only to say somethign else after - There is no informed consent as it is always called a little operation when it is major surgery.

They want me to try drugs for my MS that the side effects are what I already suffer now. That will make me gain weight at 6lb+ ever year!

This government and their stupid ideas - scares me.

They are inhuman and I fear the postman every single day of my life - I fear the telephone. I live in fear trying to save up every spare penny for when they say i am fine to work. And then sanction me. Fear - Is how my life is 24/7/365

DavidG said...

Ron:
"ESA work-related activity group members have to attend work-focused interviews and undertake work-related activities, such as training or condition management programmes, but support group members do not" http://www.benefitsandwork.co.uk/employment-and-support-allowance/esa-glossary/1345-work-related-activity-group Note the 'condition management programmes'

Claimants in ESA WRAG have been required to undertake 'Work-Related activity' since June 2011, and there were 10,130 sanctions in the year following affecting 2.7% of claims, see http://research.dwp.gov.uk/asd/workingage/esa_sanc/esa_sanc_aug12.pdf and https://johnnyvoid.wordpress.com/2012/03/15/over-10000-benefit-sanctions-applied-to-sick-and-disabled-people-last-year/

Then theres the delightful prospect of unlimited mandatory workfare for disabled people: http://www.guardian.co.uk/society/2012/feb/16/disabled-unpaid-work-benefit-cuts

Take a look at this one for someone's experience of a WRAG referral http://www.consumeractiongroup.co.uk/forum/showthread.php?315796-ESA-WRAG-(Work-Program)

I've personally had JCP trying to force me onto a training programme that even the training provider said I was far too disabled for. It took ministerial intervention to get them to back down.

Anonymous said...

anonymous said ;They are inhuman and I fear the postman every single day of my life - I fear the telephone. I live in fear trying to save up every spare penny for when they say i am fine to work. And then sanction me. Fear - Is how my life is 24/7/365

This describes my life to. A life of constant fear enforced by Government for the disabled.

Anonymous said...

I had the same discussion with carer yesterday, she thought good idea for drug and alcohol. Till I said but any ill person could come under this umbrella... Everyone would be better off weighing less, not smoking or eating better where would it end?
The scared thing is that proper treatment lets just say for drugs costs hell of a lot and is in no way always helpful. So the fact this is spossed to save money already implies only by stopping benefits as surlely to offer support, counseling and other therapy for hundreds of conditions is going cost millions!
How the health care person or case worker can judge anyone's counseling or diet was not tried with enough effort is seriously bad. Not only do we all have to jump through hoops every year or so even if you have a lifeline condition we are know to be pressured constantly, there really will be no peace, rest or security from the safety benefit rug being taken away at any time.

barakta said...

Mandating addicts doesn't work either, ask any addiction specialist group. Many addicts have unrecognised mental illnesses or a complex mixture of addiction and mental illness where sometimes the substance of choice is a self-medication for the illness.

I have a close family member who is a mentally ill alcoholic. Mandations won't do anything and she'll become even more homeless and itinerant and difficult to engage with because she's forced into bare survival than she has ever been.

We should stand together and not sneer at people with addictions as "other" rather than people who have an illness which manifests in a way it's easy to sneer at and target. If we let them divide us, we'll regret it. We should stand beside all of our fellow genuine disabled people and aim for the best evidence based and specialist treatment not moralistic newsfodder scapegoatism!

Anonymous said...

I personally find it very worrying as doubtless the pilots will be declared a success. It underpins also the government's attitude - which seems to be that disabled people are happy to wallow in illness and poverty. The fact that treatment can worsen a condition is often ignored (CBT in particular is heralded as a glorious solution to all problems).

Clarebelz said...

I picked up on this months ago and wrote about it on my blog due to the distress caused to me when a psychologist tried to manipulate me into a 2 day a week programme, with mornings spent in the gym and lectures all afternoon.

It was ludicrous, I could barely attend the hour with him as it was! I was referred to a pain clinic for what I thought was to obtain help for a PHYSICAL problem only to fall into the hands of a psychologist with a very dangerous approach to disability: he even claimed that people were LESS disabled (we're talking here about people with diabetes, cancer, MS etc) after completing his course!!

Coupled with ignorant consultants and G.P.s who were just plain bullies, I was asked if my experiences could be used for a submission to NICE concerning the overall treatment of people with undiagnosed conditions.

You can read my blog here:

http://welfare-life-reformed.blogspot.co.uk/2012/07/welfair-treatment.html

And the full submission on the M.E. website here:

http://www.investinme.org/mestory0045.htm

Like others, I dread to think what will happen if I'm forced to go onto this programme again.

Anonymous said...

This is not about doctor's knowing best - it is about politicians knowing best - it's called fascism.