Support and inform Scottish MP Carol Monaghan ahead of her debate on the PACE trial in Parliament, Tuesday 20th February 2018

[large donner]

And I would go further and say that such clinics are very unlikely while the NICE guidelines stand. "Good" is a matter of opinion.

Sometimes people capture so much in few words and a simple statement, its actually very hard to do. This is one of those occasions!!!

 

[NelliePledge]

It just came to my mind today to set up the UK biomedical ME clinics of the future it will definitely not be a simple revamp job on the current CFS/ME clinics- equivalent to doing a redecoration and building an extension on the back of a house. What will be needed is to knock the house down and rebuild from the ground up. It’s a brownfield site but it’s got to be a new fit for purpose house that’s built on it.

 

[Indigophoton]

It just came to my mind today to set up the UK biomedical ME clinics of the future it will definitely not be a simple revamp job on the current CFS/ME clinics- equivalent

I think this is part of why the NICE Guidelines chap is hedging - if the current clinics are closed down, he suggested that in the current climate it would be difficult to get any funding for something new. That doesn't justify keeping BPS-style CBT and GET, but he does have an element of a point there.

In that respect, revamp would be better than closure for now (chucking out GET etc, and bringing in supportive services like OTs, and thorough exclusionary testing etc for the time being).

 

[Invisible Woman]

In that respect, revamp would be better than closure for now (chucking out GET etc, and bringing in supportive services like OTs, and thorough exclusionary testing etc for the time being).

Interesting thought.

Personally, I would be reluctant to be treated by staff who previously pushed on with treatments when they were clearly making patients sicker. Especially, when those patients have the same condition as me.

Setting aside the whole ME / BPS situation, there is another issue here. Some staff are deliberately putting guidelines before patient welfare when the patient's wellbeing and safety should be paramount.

 

[Indigophoton]

Personally, I would be reluctant to be treated by staff who previously pushed on with treatments when they were clearly making patients sicker.

Yes, I guess I was thinking in terms of keeping the structural/organisational 'thing' that is the clinic, but changing the staff as needed (throwing out the bathwater rather than the baby). Maybe that's not really feasible though.

 

[Amw66]

From Carol Monaghan' s twitter feed it looks as if it should be an interesting debate. Retweets show a breadth of issues

 

[arewenearlythereyet]

Interesting thought.

Personally, I would be reluctant to be treated by staff who previously pushed on with treatments when they were clearly making patients sicker. Especially, when those patients have the same condition as me.

Setting aside the whole ME / BPS situation, there is another issue here. Some staff are deliberately putting guidelines before patient welfare when the patient's wellbeing and safety should be paramount.

I'm tossing this issue back and forth.

I think I had a good CFS clinic (which may be a rare thing) in that we had a ME specialist doctor giving the diagnosis (using PEM and multiple criteria including CCC, with ellimination questinnaires for depression and anxiety to double check alternative diagnosis) and OT's who focused mostly on pacing.

What went wrong was clearly a lack of guidelines, training and support for the OTs with regards to GET and CBT. My one didn't know what to do when I reported pain symptoms when my GET went from gentle walking to jogging...she suggested spending £100 of my own money on new trainers. She also had no solution to muscle weakness in my upper body and what to do about it ( she really should have said ...forget it, you can't do anything about it). Instead she tried to hunt down an expert on GET to give advice (a woman doctor, I can't recall her name). Needless to say no advice materialise with regards to strength training (thank goodness).

I was also offered no suggestions for pain relief/management even though I pointed out that this was a major problem.

However, my OT was great with my employer at the time who were absolutely awful with regards to return to work and adaptations at work. She wrote multiple letters to HR challenging their "independent" medical advice and approach. I genuinely feel that my OT honestly wanted the best result for me and was extremely supportive ...just misguided in some areas.

My impression for my clinic is that they would do much better if they worked to establish baseline and triggers rather than artificially push patients to carry on grading up exercise regardless of symptoms. This feels like they were following the guidelines but when it got tricky (when it exceeded my baseline) they were exposed? This is clearly because the guidelines are not fit for purpose.

I think on balance they should be assessed (like OFSTED for schools) to weed out the poor performing clinics once the new guidelines are changed to remove GET and disingenuous CBT.

Having a clinic to support the GPs via referral will be the quicker way to help patients (rather than wait for the steadfast bigoted GPs to retire without a clinic )

I've tried to be fair despite the damage that has been done to me personally ...my main disgust is for crawley, sharpe, white and all the others that have dreamt up these ludicrously pathetic and inadequate guidelines.

The clinic I was sent to actually could have done good work given the chance. It's just the incompetence of these research authors that have screwed us all over.

The other thing that occurs as I'm writing this, is that while I received my "treatment" the OT kept re-emphasising that the prognosis for recovery was good if I received treatment within the first year.

I am sure that she was referring to PACE results for this claim. The NHS website repeats this. I would like that element to be removed across the board (there appears to be no evidence for this from our discussions). By admitting there is no cure and the prognosis for recovery is unknow. The patient should prepare themselves for treating this as a long term condition, this would almost certainly lead to the right sort of counselling (as oppose to CBT false illness style).

Faking the prognosis is probably the worst thing for me and something I feel most aggrieved about ...its just misinformation and manipulation pure and simple.

I'm going to try and write my letter to CM tomorrow. Any thoughts welcome.

 

[NelliePledge]

I think this is part of why the NICE Guidelines chap is hedging - if the current clinics are closed down, he suggested that in the current climate it would be difficult to get any funding for something new. That doesn't justify keeping BPS-style CBT and GET, but he does have an element of a point there.

In that respect, revamp would be better than closure for now (chucking out GET etc, and bringing in supportive services like OTs, and thorough exclusionary testing etc for the time being).

They reorganise all the time I don’t see why the existing funding currently going on CFS/ME or MUS clinics can’t be stopped and reallocated to a new service. In my area the hospital service is due to close down anyway and be delivered through pain clinics. That is a major change just like setting up a biomedical clinic would be. There would still need to be a major re-education of staff if only a revamp option is taken. Much better to spend that money on a completely new set up with an appropriate leadership, new culture and biomedical understanding of ME together with up to date clinical best practice on how to deal with symptoms of ME.

 

[Graham]

I think on balance they should be assessed (like OFSTED for schools) to weed out the poor performing clinics once the new guidelines are changed to remove GET and disingenuous CBT.

I went through a lot of changes in schools over the years, and my general observation would be that restructuring and external assessment puts great stress on professionals who are really committed to doing things in the best interests of their pupils/patients, and much less stress on those who are merely jumping through the hoops. It's the lack of good management that was to blame in schools: they are the ones who failed to stand up to poor teaching. Mind you, as in the NHS, when you are desperately short of good quality staff, what do you do?

As far as the ME centres are concerned, the good guys are those who actually bend the rules when following the guidelines because they know GET etc. are ineffective: the ones who listen to patients and try to see to their needs. But they are the ones who will be hauled over the coals or weeded out. We hope the new guidelines will be good, but there is no guarantee of that. Do we really want staff to follow bad guidelines? What we really want is good staff.

There is a lot that ME centres can do at the moment - help with pain, sleep and other problems, physio for painful muscles, advice for employment, benefits, etc., advice on aids, and, above all, understanding the boom and bust cycle and delayed payback.

 

[arewenearlythereyet]

I went through a lot of changes in schools over the years, and my general observation would be that restructuring and external assessment puts great stress on professionals who are really committed to doing things in the best interests of their pupils/patients, and much less stress on those who are merely jumping through the hoops. It's the lack of good management that was to blame in schools: they are the ones who failed to stand up to poor teaching. Mind you, as in the NHS, when you are desperately short of good quality staff, what do you do?

As far as the ME centres are concerned, the good guys are those who actually bend the rules when following the guidelines because they know GET etc. are ineffective: the ones who listen to patients and try to see to their needs. But they are the ones who will be hauled over the coals or weeded out. We hope the new guidelines will be good, but there is no guarantee of that. Do we really want staff to follow bad guidelines? What we really want is good staff.

There is a lot that ME centres can do at the moment - help with pain, sleep and other problems, physio for painful muscles, advice for employment, benefits, etc., advice on aids, and, above all, understanding the boom and bust cycle and delayed payback.

Yes, I think it starts with well written and comprehensive guidelines...but there needs to be a method of recourse for patients if things do go off track. As a parent I am pleased that teachers are given a shorter leash than when I was a child in the 1970's. I don't think it's perfect either and think that syllabus are changed far too frequently as politicians muck about with policy on education. This makes the admin and training side quite frankly ridiculous and can compromise the child's education as teachers relearn what's required as it seems to change from year to year.

However the duty of care improvements are good...stops some of the really awful bad practice that creeps in with some types. I would like the same controls seen for doctors and other medical professionals who lets face it, some of which are still behaving as if they are in the 1970's.

 

[Graham]

(This may seem to be off-topic, but I'm hoping it relates to the discussion on NICE guidelines and ME centres!)

I used to teach in the 70s, and yes, there was too much variation, and there were staff who got away with blue murder. But the variation was due to the government allowing different boards to compete with each other and present different syllabi, and the poor standards were due to desperate heads accepting almost anyone as a teacher. Whenever there was a vacancy in our maths department, we just used to hope for one applicant who could teach, preferably maths. There were times when there wasn't even that choice. But the better teachers did keep plugging for consistency etc. That situation never improved, by the way.

The problem was never that good teachers had to "relearn" what to teach though: what you teach is normally way below what you know. It was a combination of it not being clear enough what had to be taught, teachers having to try and build consistency within the specified framework, and a total lack of teaching materials related to the new requirements. It was exhausting, especially with so little money (we used to get about 1p per pupil per lesson for books, materials etc.).

The impression I get from ME centres is that often the "specialist" is simply someone who wouldn't be up to scratch as a specialist in any other area: trusts are just desperate to fill a position. There is little money, so the specialist has a short role at the start, then passes patients on to support staff who have few qualifications: they jump through the hoops, so if the guidelines say CBT, or GET, then that's what it is. And it's cheap.

So I don't think we need a thoroughly prescriptive set of guidelines. We need a good framework, but we also need to ensure that centres are properly funded so that they can attract good staff, and that they have the necessary support services to deliver what they discover is needed for each patient (such as sleep testing, shall we say).

 

[Nellie]

I'm incapable of writing a coherent letter.

And can't follow the instructions for sending a template to Carol Monaghan (or anyone) Is there anything I can just add my name to? I know you are all writing personal letters but I hate not helping.

(I am probably just having a moan.)

Thanks to everyone who is able to write.

 

[Sasha]

I'm incapable of writing a coherent letter.

And can't follow the instructions for sending a template to Carol Monaghan (or anyone) Is there anything I can just add my name to? I know you are all writing personal letters but I hate not helping.

(I am probably just having a moan.)

Thanks to everyone who is able to write.

For you and me both, Nellie! A quick, easy letter you can just dump in an email and send.

https://www.s4me.info/threads/uk-sh...he-carol-monaghan-pace-debate-on-20-feb.2468/

 

[Jan]

I'm incapable of writing a coherent letter.

And can't follow the instructions for sending a template to Carol Monaghan (or anyone) Is there anything I can just add my name to? I know you are all writing personal letters but I hate not helping.

(I am probably just having a moan.)

Thanks to everyone who is able to write.

Copy and paste this into an email and send to your GP. Obviously you need tho change the bits I've written about myself

Dear (your MP),

Re: Westminster Hall Debate
PACE trial and its effect on people with ME

Further to my email of 23/10/17 I, respectfully, urge you to attend the above debate on Tuesday, 20th February, 11-11:30 a.m. I have had Myalgic Encephalomyelitis (ME) since 1990. This means I have had to give up my career, social life and live virtually housebound and in constant pain for the last 27 years, all this time with no hope of treatment and precious little biomedical research taking place. Things are beginning to improve in the US, but sadly not in the UK where psychiatrists took over this physical disease in the 1990's. The situation was made considerably worse by the PACE Trial.

What is PACE? (Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation)

- A highly controversial trial for people with Chronic Fatigue Syndrome (ME)
- Funded by the UK Medical Research Council, Department of Health, and, unusually, the Department for Work and Pensions
- The largest trial for people with ME/cfs costing £5 million of public money
- The results claimed the best treatment for people with ME was Graded Exercise Therapy (GET) alongside Cognitive Behavioural Therapy (CBT)
- The results contradicted patients lived experience
- FOI requests to release the data were denied
- QMUL spent £200,000 to prevent the release of the data - overruled by tribunal
- The released data shows the claims were exaggerated
- The design, methodology and results have been heavily criticised [1]
- 74 International researchers from a range of disciplines and 29 patient organisations signed a letter [2] for it to be retracted from the Lancet

Why does this matter?
Repeated surveys [3] identify half of people with ME are made worse from GET/CBT.
It perpetuates the misconception that ME is a psychological illness. (The WHO classified it as a neurological illness in the 1960’s.)
People are being denied benefits, appropriate care and the focus on GET/CBT has prevented the development of important biological research.

For me it has meant that there has been no hope of a medical treatment which may help me live a more active and productive life. I have tried on numerous occasions to increase my activity levels myself, but each time it results in a relapse, which can mean I am them bed-bound for weeks or months. There is now much biomedical research which shows that patients are unable to exercise, yet this treatment is all that is offered by the NHS. The worse part is that patients continue to be harmed by these treatments every day. The NICE guidelines will not be updated until 2020, so at the moment the treatment guidelines stand, so the harm and neglect will continue.

If you want to understand better how the misconception around this disease has devastated lives, I recommend you watch the award-winning film, Unrest (4)(available on Netflix).

It would mean a lot to me and the 250,000 people estimated to have ME in the UK. I do hope you will support us in attending the debate.

Sincerely,

PS You can also show your support by signing Stephen Timms’ EDM 271

[1] http://www.meassociation.org.uk/2017/07/the-pace-trial-the-making-of-a-medical-scandal-29-july-2017/

[2] http://www.meassociation.org.uk/201...tter-to-psychological-medicine-13-march-2017/

[3] http://www.meassociation.org.uk/2015/05/23959/

[4] https://www.unrest.film/

 

[Nellie]

Thanks so much @Sacha. Done

 

[arewenearlythereyet]

The problem was never that good teachers had to "relearn" what to teach though: what you teach is normally way below what you know. It was a combination of it not being clear enough what had to be taught, teachers having to try and build consistency within the specified framework, and a total lack of teaching mater

I think today there is too much the other way with new targets and shifts in syllabus being introduced every year it seems. This is disruptive in that the teachers spend half the first term getting familiar with what's new and then cramming the kids to catch up in the later terms to meet the new targets. Well that's what they say at the parents evenings/governor meetings at my sons school.

I do accept that funding may have been a pressing issue in the 70s and 80s but that does not excuse poor duty of care. it wasn't acceptable with teachers and doctors in the 70s and its not acceptable now. Tax payers should also expect the politicians, teachers and doctors to deliver what the've voted/paid for regardless of internal politics.

Personally, I think the clinics should be managed through a balance of guidelines, meaningful performance assessment and a robust complaints process that allows doctors to be stopped doing practices that potentially harms the patient. (That last bit is my Utopia)

I have the same views for teachers as well having felt the rough end of both of these professions in the past as a direct consequence of having a stigmatised illness. I don't believe things have changed very much since then in the medical profession, but at least we have safeguarding and less discrimination in the teaching profession in state schools nowadays and ways to hold teachers to account fir their actions. I would like to see the same in medicine.

Regarding the guidelines, I don't think we should be too prescriptive either but equally we should also be wary of arguing for anything that's too loose, since guidelines that are too open to interpretation could lead to a version of CBT /GET "treatments" being given to patients through the back door. ...or worse.

Any guideline will need very careful crafting to ensure a new monster isn't inadvertently created.

Just as a side note ..Using the word "framework" in my old line of work was code for "it was too complicated to write a proper process for the manual and we ran out of time, so we cobbled this stuff up in an afternoon"

I think some government officials have used this word referencing the Brexit negotiations recently.
I'm sure that's not what you meant but it made me smile and brought back a few memories.

 

[Invisible Woman]

I agree with much of what you say @arewenearlythereyet but:

NICE was set up to provide guidelines/ a protective framework and it's not worked out so well for us.

As I see it, sometimes doctors want to help, but the system actually prevents them. One example is sleep meds - even when people meet the requirements to try something like melatonin on prescription and the GP wants to let 'em try it, they can be blocked by the "system". They can push SSRIs till the cows come home, though.

The other is that in the current situation (or at least my reading of it) NICE are saying that if patients have been harmed it's not their fault. The guidelines are just guidelines and it's down to the therapist /doctor to assess if they are appropriate for each individual patient.

Whereas the clinic or individual healthcare professional can say they were following the guidelines, so it's not their fault either.

They just offload the blame and no one is looking out for the patient's best interests.

If patients are to be believed - the ones who filled in surveys for AfME and ME Association at any rate - lots of patients are being made worse. Why are clinics themselves not flagging this up? Lack of accountability? Patients too scared to tell them they've been made worse?

The model is not working- where there should be feedback protecting patients from harm and indicating that too few patients see any significant improvement and thus triggering change, instead we have a mechanism for blame shifting.

We aren't going to change the system, but somehow the guidelines need to do something to protect against harm.

 

[arewenearlythereyet]

yes I agree with everything you said @Invisible Woman

Part of the problems I think is that some folks don't like following guidelines or being told what to do, so just ignore them and hope they get away with picking and choosing how to interpret what's required and dodging their responsibility.

This is the same for any process...an example I know about is food safety processes which are designed to protect public health.

One key process is personal hygiene to prevent bacterial contamination from food handlers. in this instance, there is a key critical control point of washing hands aft the toilet and before entering the food preparation area. if an individual decides to go against the procedure then the recourse is education and eventually the sack for persistent offenders.

The problem then comes with proving non compliance because some people will lie. So you have robust enforcement via mangemeant and notices and swab food prep areas/hands for bacterial load regularly that highlights the offenders. Ultimately though, you need to rely on trust that people understand your procedures and the consequences for not following them.

My example is a simple one and only part of a wider policy and procedures that are designed to keep food safe to eat, but the principle of: guideline, process, monitoring, correction is fairly fundamental. This seems to be missing/patchy in medicine. We only seem to have the guideline bit most of the time.

So in my mind it needs to start with the guideline being clear so people don't duck or dodge around it to suit their own agenda. However you also need something else to highlight non compliance when this goes wrong.

You also need education of guidelines to run alongside the roll out to have the highest impact....otherwise there is a risk that it becomes a dust collector and peoples defence is ..."I didn't know, you never told me".

We should challenge the education of the guideline at the stakeholder meetings.

As to accountability...I think this is more tricky and this is a wider problem in the NHS and probably medicine generally. A more robust complaints process would help give patients some recourse, but goes no way to improve the absence of procedure and compliance checking (it's like shutting the stable door after the horse has bolted).

This is less than ideal. I think the liklihood of meaningful reform in this area is slim, even though it is desperately needed across the NHS.

Until then, the only thing patients seem to have available to them is to wave guidelines in the doctors face and point out their shortcomings when they occur.

My view is that at least give me a guideline that is evidence based and fit for purpose to wave. I gave up fully "trusting" doctors to do the right thing a long time ago. I agree this is inadequate though.

Guideline rewrite is a pigeon step for us on a very long road, but still worth doing in my opinion. It will need a revisit when new evidence from research comes along, but that's at least 5 years away. Removing GET and opening up palliative care is probably the best we can expect in this round of changes.

 

[Sly Saint]

The debate is mentioned on the BBC website:
"
In Westminster Hall, proceedings open (09:30) with a 90-minute debate on the future of basketball in the UK, led by the Labour MP Alex Sobel. He believes grassroots basketball is under threat after the loss of funding which followed a disappointing performance at the Olympics.

At 11:00 the SNP's Carol Monaghan raises a controversial medical trial which patients with myalgic encephalomyelitis (ME) say makes them more ill.

When the trial results were published in 2011, researchers claimed that graded exercise therapy (GET) and cognitive behaviour therapy (CBT) were "moderately effective" forms of treatment for the estimated 250,000 ME sufferers in Britain. But the trial has faced intense criticism from patients and charities, such as the ME Association, over how the results were obtained, analysed and presented."

http://www.bbc.co.uk/news/uk-politics-parliaments-43090246

 

[Barry]

The debate is mentioned on the BBC website:
"
In Westminster Hall, proceedings open (09:30) with a 90-minute debate on the future of basketball in the UK, led by the Labour MP Alex Sobel. He believes grassroots basketball is under threat after the loss of funding which followed a disappointing performance at the Olympics.

At 11:00 the SNP's Carol Monaghan raises a controversial medical trial which patients with myalgic encephalomyelitis (ME) say makes them more ill.

When the trial results were published in 2011, researchers claimed that graded exercise therapy (GET) and cognitive behaviour therapy (CBT) were "moderately effective" forms of treatment for the estimated 250,000 ME sufferers in Britain. But the trial has faced intense criticism from patients and charities, such as the ME Association, over how the results were obtained, analysed and presented."

http://www.bbc.co.uk/news/uk-politics-parliaments-43090246

At least it's not been "airbrushed out". I guess the thing here is, this is a political journalist not a science one, so maybe the SMC don't have much traction here.