The IAPT Pathway for People with Long-term Physical Health Conditions and MUS. Full implementation guidance.

Trish said:
Even among the group of syndromes and symptoms they classify as MUS we are in a unique position, in that the GET part of the package actually causes serious physical harm.
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Precisely & that's the part that makes the CBT bit (that will for us be aimed at 'assisting' patients to discover that your above statement about harm is nothing more than an 'unhelpful belief'), so sinister.

I don't know how to fight it, it's Goliath, ridding a juggernaut.
And i really do think that the whole 'NICE new guideline' thing is a stitch up now. I don't think it was done to address our (ie patients,knowledgeable scientists/advocates Tuller et al) concerns at all, but to enable the steering of us all towards MUS - hence the Burton appointment - whilst providing a handy "we looked into it" get out, to silence/discredit us with. Same with Cochrane.

:(

I hope i live to see the Panorama/Dispatches programmes which will eventually ensue, but i don't suppose i will.
 
See also this thread:
https://www.s4me.info/threads/pps-n...persistent-physical-symptoms-02-10-2018.6732/

for ppl with "Persistant Physical symptoms"
So MUS or LTPHC (Long-term Physical Health conditions).

Although it would appear that now in IAPT and CAHMs CFS and ME/CFS respectively are now being 'classified' as 'mental health conditions'.

Why was Julia Newton involved; is this now being endorsed by AfME?

Also another question for NICE, the NHS and the Health Minister:

Why do we (the patients) have to wait until 2020 having followed due process and allowed all the evidence to be considered to get any alterations to the current guidelines, AND YET
a group of people (allegedly not involved with the NICE guidelines) can bypass the whole system and change the classification of an illness ?

This is not only making a complete mockery of the whole NICE guidelines process but, given the controversy about the treatments being prescribed (one of the main reasons for the review in the first place), is actually compounding the problem.

Add to this the effective 'silencing' of key advocates in order to abide with the NICE regulations.
Are we now moving into Human Rights territory?

eta:
https://www.equalityhumanrights.com/en/advice-and-guidance/human-rights-health-and-social-care
 
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I was reading Margaret Williams article about the withdrawal of the case for Judicial Review after the last round of nonsense. It reminded me of the NICE threats against the solicitors involved to apply for a "wasted costs" order. This prevented a proper hearing of the substantive issues. One wonders about the potential wasted costs if the new review were to make redundant all of these processes that have been put in place. Could it be allowed to happen?
 
JemPD said:
Precisely & that's the part that makes the CBT bit (that will for us be aimed at 'assisting' patients to discover that your above statement about harm is nothing more than an 'unhelpful belief'), so sinister.

I don't know how to fight it, it's Goliath, ridding a juggernaut.
And I really do think that the whole 'NICE new guideline' thing is a stitch up now. I don't think it was done to address our (ie patients,knowledgeable scientists/advocates Tuller et al) concerns at all, but to enable the steering of us all towards MUS - hence the Burton appointment - whilst providing a handy "we looked into it" get out, to silence/discredit us with. Same with Cochrane.
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This was my belief in 2005 and 2006 regarding NICE, and it was the reason I did not engage with it, ie the NICE process (it was already well covered by good people) I remained a passive observer - It was my view in 2017 that history was repeating itself and that NICE (DoH Government Royal Colleges SMC etc) all had a hidden agenda.
I believe they changed the decision to review due to the possibility that they would get a substantive challenge, legal or other which may have been successful. (They told me they did not have an in house legal department- so who advises them- the Government solicitors... (who I know to my personal cost are ruthless in any JR case)..... so did Kev and Doug in 2009?)

What we are seeing IS history repeating itself and JemPD you are spot on in your view IMHO!

What people may wish to consider is how to influence their CCGS on cost effectiveness and other clear matters so the CCGs will pick and choose what suits( and disregard NICE due to local needs) and steer a better path aligned to local patient need and patient voices. That's what's happened here on our patch.........
 
Sly Saint said:
I like the way she says 'MUS term a bit outdated'!
What would she prefer? MUPS, PPS, BDS.........or any of the other bogus names?

Not even slightly concerned about the inclusion of the additional 'mental health disorders'(?)
speaks volumes.
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It is 100% an issue of branding. Same as adding the "bio" to psychosocial without changing anything to the substance.

They know they have no evidence and are playing PR and politics. They just want to believe so bad in the MAGICAL POWER OF THE MIND, cue thunder and lightning, with birds flying away in the distance.
 
Thanks for the heads-up message, @Sly Saint. Sorry I didn't reply earlier but last week was a particularly difficult time and I'm just catching up now.

It's always problematic trying to respond to questions/discussion points on legal issues because there are no clear-cut answers and each individual point raised usually merits a lengthy response. The honest answer to pretty much all legal questions is "it depends.....". I've found from previous experience that trying to explain things usually ends up getting into extended and complicated discussions which leave everyone more confused (including me!).

That said, I'm always happy to help if I can on specific points. Human rights (mentioned above) are an integral in every aspect of life. Article 8 of the European Convention on Human Rights would be the most likely vehicle for ME patients (right to private and family life which broadly includes the right to appropriate healthcare). There are other possibilities but Article 8 is the most relevant. However, launching a legal action is an expensive and lengthy business and always needs expert professional advice first. In the context of the NICE review, it would most likely arise as part of a (hypothetical) judicial review. Such an action would also need to avoid the mistakes of the last JR attempt ten years ago.

Of course the fundamental rights of the ME community are being breached all the time but, in the current climate, it would be difficult to prove that, either as a stand-alone action (via a declaration from the High Court - which doesn't happen often) or as part of another action such as a medical negligence claim that damage has been caused to ME patients through inappropriate and dangerous treatment recommendations (also very difficult to prove in the current circumstances). Again, external professional advice would be needed as the experience of the ME community is unique and highly complex.

Sorry I haven't addressed other points raised here - but that's for the reasons I've set out above. As I've said repeatedly in my blog and on social media, my view is that we need to consider the overall bigger picture as to WHY the ME community is still so neglected and stigmatised. My view is that it is because of a decades-long complete lack of an overarching strategy specifically designed to address negative perceptions of both ME patients and the illness itself.

That is a very wide remit and would encompass all the major issues, including NICE. I'm trying to muster the energy to do a longer blog post on this but haven't quite got there yet. Hopefully, when I do, it will make more sense than this short thumbnail.
 
Valerie Eliot Smith said:
Thanks for the heads-up message, @Sly Saint. Sorry I didn't reply earlier but last week was a particularly difficult time and I'm just catching up now.

It's always problematic trying to respond to questions/discussion points on legal issues because there are no clear-cut answers and each individual point raised usually merits a lengthy response. The honest answer to pretty much all legal questions is "it depends.....". I've found from previous experience that trying to explain things usually ends up getting into extended and complicated discussions which leave everyone more confused (including me!).

That said, I'm always happy to help if I can on specific points. Human rights (mentioned above) are an integral in every aspect of life. Article 8 of the European Convention on Human Rights would be the most likely vehicle for ME patients (right to private and family life which broadly includes the right to appropriate healthcare). There are other possibilities but Article 8 is the most relevant. However, launching a legal action is an expensive and lengthy business and always needs expert professional advice first. In the context of the NICE review, it would most likely arise as part of a (hypothetical) judicial review. Such an action would also need to avoid the mistakes of the last JR attempt ten years ago.

Of course the fundamental rights of the ME community are being breached all the time but, in the current climate, it would be difficult to prove that, either as a stand-alone action (via a declaration from the High Court - which doesn't happen often) or as part of another action such as a medical negligence claim that damage has been caused to ME patients through inappropriate and dangerous treatment recommendations (also very difficult to prove in the current circumstances). Again, external professional advice would be needed as the experience of the ME community is unique and highly complex.

Sorry I haven't addressed other points raised here - but that's for the reasons I've set out above. As I've said repeatedly in my blog and on social media, my view is that we need to consider the overall bigger picture as to WHY the ME community is still so neglected and stigmatised. My view is that it is because of a decades-long complete lack of an overarching strategy specifically designed to address negative perceptions of both ME patients and the illness itself.

That is a very wide remit and would encompass all the major issues, including NICE. I'm trying to muster the energy to do a longer blog post on this but haven't quite got there yet. Hopefully, when I do, it will make more sense than this short thumbnail.
Click to expand...

There was a judicial challenge to the 2007 NICE guidelines that was dismissed on all grounds. Its objections have turned out to be correct, as can be argued by the fact that a review challenge is currently under way, following thousands of objections about their fitness and value. I wonder if that can be a factor in a new challenge, if it's necessary.

Ultimately we have people with a primary experience of a disease telling self-appointed experts with no understanding of this disease (as it is a mystery after all, even by their own admission) that they are wrong about their most basic assumptions, but the benefit of the doubt was given to the researchers by appeal to authority and claiming that they have essentially intuited the answer to a complex problem despite not making any claims as to its mechanism or cause. Ultimately they have nothing but their own assurances that they are correct, since no objective evidence exists to support their ideological framework.

Surely there has to be some weight behind the fact that the objections to the psychosocial model have remained consistent and correct for 3 decades by now. By sheer number this is the personal opinion of a small group of self-proclaimed experts standing against the overwhelming objections of those experiencing it and a supporting group of experts with much more significant claim to expertise, since ME is not classified as a mental health condition and as such psychiatrists and psychologists have no particularly relevant insight, especially over biomedical researchers.

I know judicial principles do not apply here, but the psychosocial researchers' arguments are basically second-hand opinion and hearsay, at best. Equivalent to a stranger somehow arguing they know what happened at an event they were not present and have no reason to have any particularly knowledge of.

There is not much precedent for this kind of situation, of patients overwhelmingly objecting to self-proclaimed experts arguing for a disease model. The only examples that come to mind all ended up confirming the patients' perspective, like with MS and peptic ulcers. It's a bit ridiculous that people can just claim to have intuitive understanding of a disease that is largely a mystery while its patients overwhelmingly condemn them as worse than useless.

Ultimately it all rests on completely invalidating our own perspective, since the preferred model entirely contradicts everything we claim about our own experience. Which comes down to whether we have agency and competence of mind, something that has not been argued and yet is a matter of fact in practice.
 
rvallee said:
There is not much precedent for this kind of situation, of patients overwhelmingly objecting to self-proclaimed experts arguing for a disease model.
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Something I have been becoming increasingly aware of is that there is a large number of people with ME who buy in to the vague BPS models of central sensitisation/dysfunctional beliefs and behaviours. It's understandable, but such a barrier to progress.

rvallee said:
since the preferred model entirely contradicts everything we claim about our own experience.
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Actually the preferred model is so vague and all encompassing and linked to a promise of recovery that it can be very seductive.
Trauma as a child?
Recent trauma or loss? Stressed about anything else?
Were you a successful person with many obligations?
Were you busy? Sporty? High achiever? Under achiever?
Were you feeling unfulfilled, or stymied in your career?
Are you feeling negative about your prospects for the future?
"We'll help you sort out any of that that applies and then you can move on to wellness."
 
Valerie Eliot Smith said:
Thanks for the heads-up message, @Sly Saint. Sorry I didn't reply earlier but last week was a particularly difficult time and I'm just catching up now.

It's always problematic trying to respond to questions/discussion points on legal issues because there are no clear-cut answers and each individual point raised usually merits a lengthy response. The honest answer to pretty much all legal questions is "it depends.....". I've found from previous experience that trying to explain things usually ends up getting into extended and complicated discussions which leave everyone more confused (including me!).

That said, I'm always happy to help if I can on specific points. Human rights (mentioned above) are an integral in every aspect of life. Article 8 of the European Convention on Human Rights would be the most likely vehicle for ME patients (right to private and family life which broadly includes the right to appropriate healthcare). There are other possibilities but Article 8 is the most relevant. However, launching a legal action is an expensive and lengthy business and always needs expert professional advice first. In the context of the NICE review, it would most likely arise as part of a (hypothetical) judicial review. Such an action would also need to avoid the mistakes of the last JR attempt ten years ago.

Of course the fundamental rights of the ME community are being breached all the time but, in the current climate, it would be difficult to prove that, either as a stand-alone action (via a declaration from the High Court - which doesn't happen often) or as part of another action such as a medical negligence claim that damage has been caused to ME patients through inappropriate and dangerous treatment recommendations (also very difficult to prove in the current circumstances). Again, external professional advice would be needed as the experience of the ME community is unique and highly complex.

Sorry I haven't addressed other points raised here - but that's for the reasons I've set out above. As I've said repeatedly in my blog and on social media, my view is that we need to consider the overall bigger picture as to WHY the ME community is still so neglected and stigmatised. My view is that it is because of a decades-long complete lack of an overarching strategy specifically designed to address negative perceptions of both ME patients and the illness itself.

That is a very wide remit and would encompass all the major issues, including NICE. I'm trying to muster the energy to do a longer blog post on this but haven't quite got there yet. Hopefully, when I do, it will make more sense than this short thumbnail.
Click to expand...

Thanks for the reply. Look forward to reading your blog post on this issue.

eta: are there any organisations that we could potentially approach?
I have noticed that in the media that HIV (re stigma) has just started getting more coverage.
 
I have tried approaching other organisations (as have others) but without success.

There are probably two reasons for this: one is that there is a not unreasonable assumption that we already have our own advocacy organisations so why aren't they doing the work; the other reason is, most likely, the highly-developed stigma around the illness and patient community.....

Yes, HIV is back in the media, probably because 1 December is World AIDS day and we have just gone past that date now.

The situation for ME is very different from that of the HIV/AIDS community. The ME community has decades of entrenched stigma and neglect to unravel before it can even start to change the narrative. HIV/AIDS was dramatic, vocal, disruptive and highly effective in its early days and achieved recognition that the ME community can still only dream of. The histories are completely different and the utility of the HIV community as a comparator is very limited.
 
IAPT and Rudolph

Rudolph had a very shiny nose, in a routine consultation with his GP, Dr Touchy-Feely, the latter said that it was medically unexplained and he could be referred/or refer himself to IAPT.



He replied that it was a long term physical condition and he didn’t think a psychological service was appropriate.

The GP opined that he might have persistent somatic symptom disorder and entered this in his notes.

Later that day Rudolph had a telephone conversation with Father Christmas who wondered whether he could help him out that evening. Rudolph mentioned in passing his conversation with the GP.

Father Christmas observed that everyone knew he had a very shiny nose and could on occasion feel left out or ridiculed but was this really a psychological problem, didn’t IAPT have enough to do with all the anxious and depressed people!

Rudolph replied sheepishly, perhaps I should ring IAPT in the New Year, after all the GP is saying I have got persistent somatic disorder.

Father Christmas replied Dr Touchy-Feely, does not know what evidence based criteria are for anything and added whimsically ‘he doesn’t even believe in me’.
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http://www.cbtwatch.com/iapt-and-rudolph/
 
https://www.ncbi.nlm.nih.gov/pubmed/30008263

Abstract
England's flagship 'Improving Access to Psychological Therapies' (IAPT) service has cost around £1 billion yet Scott's (2018a) study suggests that only 9.2% of IAPT patients recover. This leaves an enormous gap of 40.8% between the observed recovery rate and IAPT's claimed recovery rate of 50.0%. The spotlight is on patients with 'medically unexplained symptoms' (MUS) and 'long-term conditions' (LTCs) such as 'diabetes, COPD and ME/CFS, yet there is no way of knowing whether IAPT is capable of yielding the promised rewards or English patients are being sold an expensive pup. An urgent independent expert review of IAPT recovery rates is necessary to answer this question.

KEYWORDS:
CBT; IAPT; NHS; anxiety; depression; happiness; health economics; long term conditions; medically unexplained symptoms; recovery rates
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Does anyone have access to the full paper?
 
obeat said:
What's the definition of recovery? There needs to be a consensus in medicine about the terms recovery, improvement and remission. Use cancer definitions.
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PACE set that standard at the physical function of an average 80 year-old. It is published and accepted research, meaning this is an accepted standard as far as UK medical institutions are concerned, judging by their full-throated defense of it as "good, solid science", and "a thing of beauty".

Easy-peasy: almost nobody is sick anymore, we just redefine being as neither dead nor in a coma. Problem solved! Budget cut in half, it's just a modest proposal.
 
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