ME/CFS services in the United Kingdom

This sounds like the sort of things that should be brought up at the NICE committee. ME is found all over NHS literature as a mental health condition despite not being classified as such and the NICE guidelines in no way, shape or form stating so.

Because they only claim that psychological treatment is "helpful" (whatever that means, because they don't really bother quantifying or even qualifying what that means) and the best treatment available, not that it implies it is a mental illness. And yet, this is how the guidelines are translated in reality.

How is it that despite not being classified as a mental health condition the NHS arbitrarily implements its services to ME patients within mental health services?

Are the guidelines simply ignored in practice? Are there alternative guidelines unknown to the public privately advising services to ignore the public guidelines and insist that it is not a medical entity? If not, where do NHS services get the idea that it is OK to reinterpret the guidelines in such an arbitrary way? What guidelines or policies give way to those services considering they contradict what NICE and the NHS say publicly?

Of course we know that this is what they actually mean, but so far have been allowed to say one thing and do another entirely. How common is that? Are guidelines a narrative for the public and superseded by internal documents on a regular basis? Because if it can happen for such a common disease, it can certainly happen with all of them.

 

It would be good to have a list of exactly how many of the services are under mental health - it seems to me that could be useful for the parliamentary debate and the NICE review...

 

Some, or probably lots of medical facilities are now plastered with signs warning not to swear, threaten violence etc.

Health care workers get a lot of abuse, and work place injuries, but the system doesn't adjust itself to alleviate problems for patients and staff. The system just tries to adjust the patients, and staff.

 

https://twitter.com/user/status/1067053392130916354


glad someone's picked this up

 

As Merryn’s sister, I’ve emailed them and sent it with links to information about her inquest and showing she has ME as official cause of death. It’s absolutely appalling that this is happening across the country. So utterly wrong

 

Yes. In addition to what we already know about research, which seems to have been about 90%+ wasted on psychosocial research.

Regardless of how it's presented, it is absolutely not acceptable for government policy to say one thing and do the exact opposite. NHS, NICE and MRC insist they understand and recognize the reality of this disease, yet spend most of their funds denying and erasing it as it exists. Government policy is not supposed to be arbitrary and it is especially not supposed to be deliberately misleading.

 

I had a dig around earlier today and it appears that it's down to the CCGs (ie not NHS England).
It makes it very complicated to try and find out as a lot of them would include ME/CFS under IAPT.

 

Manchester CFS/ME Service for Children and Young People

http://www.cmft.nhs.uk/childrens-ho...arrington-building-specialist-services/cfs-me

this is their Information For Young People and their families:
http://www.cmft.nhs.uk/media/1413807/cfsme info patients.pdf

(out of date info with AYME as recommended org, also the links to the RCPCH guide/guideline don't work)

 

The Leeds and West Yorkshire service is based out of the Newsam Centre at Seacroft hospital in Leeds, which is a psychology/psychiatry centre. When I went there years ago it was chiefly counselling on offer, before aggressive CBT took hold, thankfully.

It is also helpfully situated right at the back of the hospital, a very long way from the car park which is far from ideal for patients with poor mobility!

 

Would it be possible to set up a thread where we could just post refs to current clinic info and maybe also current training and teaching re management of "CFS/ME"? Or would that be better in a read only section of the library?

 

CFS comes under psychological therapies remit under CAMHS in Scotland.

 

The problem/challenge though in the UK is that our Government has no direct influence on medical policy. This is down to NICE who issue guidelines for the NHS to follow, as we know, but even those guidelines, at least when it comes to ME, seem to be interpreted differently by different geographical regions of the NHS.

I'm assuming that with guidelines that address more 'serious' illnesses that the interpretation issue is very much less e.g. I doubt that cancer treatment varies as much as ME treatment does, so perhaps this is something that should be highlighted.

 

That's where I was getting at. Are the guidelines just a suggestion? Certainly not systematically, as you say for "respectable" diseases they are certainly not arbitrarily ignored, in this case pretty much contradicted. NICE is technically not political but it is still a government body subject to obligations, like not being allowed to arbitrarily make decisions on whims. It is supposed to be based in evidence and reality and cannot be capricious or ideological (very much in theory, though, as psychosocial is 100% ideology).

So then what is the process by which they can be arbitrarily ignored, based on no particular reasons and only for some conditions? And additionally: what is the point of guidelines if they can be ignored so drastically? Does NICE not bother checking up? Or is it another entity tasked with making sure that happens? Or not making sure, as is happening here.

It basically seem to be a wholly unaccountable system that allows for prejudice and pseudoscience to overrule scientific evidence, both in process (as the NICE guidelines ignored most of the evidence) and in implementation.

 

As far as I know /have read the NICE guidelines are (when it suits) just guidelines and it is up to the clinician to use their best judgement. I guess from the clinician point of view, unless they've done something stupid, if it goes wrong and they've followed the guidelines then there's no comeback. If they've deviated from the guidelines and it goes wrong there'll be explaining to do.

As far as I know NiCE is about providing value for money as well as safety. So it should be part of their remit to know what happens to patients who have been treated.

However, as ME doesn't come under a given speciality, historically I think patients were sent to any specialist who claimed an interest, regardless of speciality. It certainly seems that standards are much lower when it comes to mental health, so maybe that's why NICE have never bothered to check for value for money.

Edited - spelling/clarity

 

Exactly - part of the feedback loop is missing as they apparently have no mechanism in place to see what is effective and what's not and if something isn't effective is it because of implementation, or simply because it doesn't work.

Given the anecdotal evidence from patients about harm caused by GET, for example, one would think that clinics all over the country should be filling in the equivalent to a yellow card system. This isn't happening. Either they're not collecting data because they don't want to, or because no one is looking for that data from them.

Without this kind of feedback millions of public cash can be wasted with no accountability. I thought it was part of NICE's remit to stop that happening.

 

Where are the charities on this? The IAPT programme is not new, it dosn' t take much savvy to see the planned progression.

 

Suggestion, a strong rebuttal letter?template is developed for individuals to send to their MPs, with CC into Heads, chairs of local of CCGs and any "Joint Strategic Commissioning Committees and local Community (Health) Partnership organisations?

This is clearly a power grab on the part of vested interests and various "Wounded Healers........
The IAPT sessions will be "group", cheap, cheap, not inidividualised. A friend with autoimmune Polymyalgia Rheumayic and just diagnosed with prostrate cancer was offered a therapy session with 40 other patients. Be aware and be warned!