Monday, 8 August 2016

Who is responsible?

Who takes responsibility when National Health Service guidelines cause medical harm?

It's a serious question.  Where does the buck stop?  


I am asking because, the National Institute of Clinical Excellence (NICE) guidelines for myalgic encephalomyelitis, ME, still recommend two controversial therapies: Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT).

Actually NICE prefixes the name, ME, with "CFS" (chronic fatigue syndrome) - a shocking misnomer, that suggests patients are simply fatigued or tired.  This would appear to be an intentional attempt to belittle the disease.  It certainly doesn't indicate the potential for ME to become so severe that some patients exist in a living limbo of agonising immobility for years and even decades.

Yet General Practice doctors consult NICE guidelines, see the word "exercise" and regularly tell their ME patients to get out and starting exercising.

I too was given this advice at the start of my illness.  "Three short brisk walks a day", I was told.  It didn't work for me, and I doubt it would work for anyone with this debilitating disease.  Why would it?  One of the main problems with the disease is that exertion of any kind exacerbates all symptoms. Indeed, in my own case, trying to follow the advice I was given led only to increasing disability.

Patient groups and charities, are very aware of the problems with NICE guidelines and have often pointed out that both CBT and GET tend to do more harm than good.  The ME Association survey clearly shows that 74% of those doing GET say their symptoms are made worse.

Further, the now notorious PACE Trial which provides the so-called evidence base for GET and CBT, in fact only shows minor improvements for a small percentage of individuals.  Add to this, the fact that the methods used in the PACE trial, have been scientifically questioned, and that the authors are going to great lengths to resist releasing their data, and suddenly the evidence seems dubious.

Yet still patients are being subjected to this "exercise" paradigm.

So why is nothing changing?  Why does NICE cling to these harmful and questionable therapies?

What has happened to the medical maxim "first do no harm"?

And who is ultimately responsible for the harm being caused? 

I don't blame the doctors.  They refer to the guidelines and believe them to be the best medical information available.  They advise as they are advised.

Doctors also read media headlines, and sadly most ME news stories claim that people with ME just need to exercise and think positively in order to recover. It certainly seems like good common sense advice for the life-weary. Yet because ME has no clinically accepted biomarkers, it is easy for doctors to genuinely think the ME patients they see are just run-down. Or, conversely, to think that those who are just run-down might qualify as having the condition Chronic Fatigue Syndrome, which curiously the media always follow with the phrase "also known as ME".

One way and another, it is easy to see how confusion arises.

Yet for those who have the severely disabling, long-term, life-altering, debilitating disease of Myalgic Encephalomyelitis there can be no confusion: these patients know they have something very physically wrong with them. Any small extra thing a person with ME tries to attempt, results in flu-like payback, and potentially a ratcheting downwards of their long term health.  The disease is relentlessly cruel, stealing away the very essence of each sufferer's existence.

And for the most severely ill it seems there is little the NHS can offer.  Charities regularly get calls from concerned patients and their families, because home visits are denied, and trips to health centres or hospitals are too detrimental to the patient's well-being.

So it seems, severe ME patients are largely ignored by health services, and the NICE guidelines have few suggestions for patients reaching this state.  If patients are lucky, they are given the equivalent of palliative care to ease their symptoms, but not much else.

Yet there are many anecdotal stories of Graded Exercise Therapy being the initial trigger that sent mild or moderately ill patients hurtling into the abyss of severe ME.  I cannot understand why these worrying stories, and the reports from the charities are being so blatantly ignored.

I ask again:  Who is responsible?

****

Useful References:

NICE guidelines for CFS/ME: 
http://www.nice.org.uk/guidance/cg53/chapter/1-recommendations

PACE Trial
: Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/fulltext 

Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome by Tom Kindlon http://www.ncf-net.org/library/Reporting%20of%20Harms.pdf

ME Association: Our CBT, GET and Pacing Report calls for major changes to therapies offered for ME/CFS | 29 May 2015 http://www.meassociation.org.uk/2015/05/23959/

David Tuller's articles on Virology Blog about the PACE Trial problems : Trial by Error: http://www.virology.ws/2015/10/21/trial-by-error-i/ and further articles on Virology Blog here: http://www.virology.ws/mecfs/

Valerie Eliot Smith has recorded events regarding refusal of PACE Trial researchers to share data: https://valerieeliotsmith.com/tag/pace-trial/

From Dr Mark Vink: The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: A review  http://www.sciforschenonline.org/journals/neurology/JNNB-2-124.php

Other posts on Just ME:

10 Things ME Patients Need NOW! March 2015
ME Awareness - Why NOT Exercise? May 2014
Graded Exercise Therapy? No Thank You! Sept 2015
The Use of Patient Blogs as a Care Resource
(My video presentation at Queens University Belfast) Sept 2015
Prof. VanNess on recent press reports Jan 2015

20 comments:

  1. it appears the powers that be use selective hearing.

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    1. Why can't the charities get together and sue the NHS for this? It is very serious and causes tremendous suffering.

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    2. Apart from being extremely costly in legal fees, all it will do is cost the NHS (the taxpayer) money which could be better spent on patients.

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    3. I know the charities are certainly pushing for change. I don't know enough about legal processes to comment on the idea of taking a case, but I imagine it would be very costly.

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  2. The question every suffer asks. Whoever it is should be in court Sally.

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    1. It is incredible that patients have been saying all these things for decades, and yet nothing happens to change the situation.

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    2. There is enough evidence now to realistically do this. Threaten the NHS with a lawsuit - and a big publicity stunt. In times of austerity, showing them up to be wasting all this funding on psychological treatments which cause harm may just be the right time to get them to address and rectify this.

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    3. Publicity of the ££ wasted on therapies that patient charities regard as useless at best, and harmful at worst, would be great. We just need some big media outlets to pick up the story. Perhaps #MillionsMissing will generate some interest this time around?

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  3. Who indeed. I know this is very cynical of me, but I cannot help wonder if it is because it's cheaper to say it's our fault for 'not trying'. Gives them (the PTB - powers that be) a 'get out clause', which is why they are sticking to the fraudulent PACE results.

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    1. Certainly I think that can be part of it Gwen. Yet surely if we all recovered with real treatment and went back to work it would be less expensive than the current impasse. :(

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  4. You would think the government would want us well and off benefits but it's cheaper to give us CBT/GET and then blame us when we don't get well. when you have the work capacity assessment where even the terminally ill with Cancer are found fit for work and blamed for their illness, there seems little hope for those with ME and it's a win win for the government. Not surprised to learn the DWP part funded the PACE Trial and now the authors refusing to be transparent with data. All very suspicious!! The DWP been up to dodgy tricks for years and the government over the last 30 years have been equally dodgy!!

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    1. Yes. The government have a lot to answer for in terms of the degrading of the care on offer to the long term ill.

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  5. Another useful reference might be this Sally - http://www.bailii.org/ew/cases/EWHC/Admin/2009/452.html

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    1. Sorry, I don't why that didn't format properly, I didn't put the spaces, maybe this comment will do the same, let's see...

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    2. Thank you Jo - that is a hugely long read! Very interesting however. Will try to get my head around it all now.

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  6. They ALL need to be sued. Maybe that will ajudicate the responsibility.

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    1. Change is certainly urgently required. xx

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  7. Legal accountability was attempted in 2009 http://www.meassociation.org.uk/2009/12/statements-of-concern-about-cbtget-provided-for-the-high-court-judicial-review/

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    1. Thank you. That is a very interesting report. I was not aware of this.

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