The Chronic Fatigue Service run by East London NHS Foundation Trust (ELFT) is closing

https://www.elft.nhs.uk/service/308/Chronic-Fatigue-Service

So what happened shortly before December 2016?

 

Was that the release of the raw PACE data?

 

It might not have been ME related but financial..

How is it acceptable to not commission services when the NICE guidelines state that they're needed for complex cases. The severe need access to expert doctors. How is it acceptable to leave pwsevereME or complex without medical care in the way that leaving unfixable MS or ALS wouldn't be? Or if a GP wants assistance with diagnosis or if people need management support. If you write to DOH they say it's up to CCGs, CCG will say there's financial constraints/competition, so in effect the policy is ME can be cared for or not in an ad hoc way, where CCGs have the spare cash, if not nothing.

I remember my GP telling me my local services had no vacancies to take me on. What other life destroying illness is getting this treatment?

 

I think this may lay bare the dilemma faced by anyone on a NICE committee thinking of changing the rules.

If we think the NICE guidelines are not worth having then can one invoke them to justify a service? I think everyone is agreed that PWME need to have regular review and assessment but is that really anything to do with them having ME or is it just because they are disabled and ned to be managed as such? Would it be better to have no specific guidelines for ME so that PWME can fall under more general guidelines for looking after people with severe disability? After all, there are no specific treatments so there are no 'expert doctors' for ME because there is nothing to be expert in, except perhaps in knowledge of the true natural history and in how to distinguish symptoms from new problems from the ME itself.

I don't know the answer to these questions but there is no doubt that asking for a review of NICE guidelines that removes recommendations for specific therapies leaves it open for councils to axe their ME services without qualms. I think it would be good to have doctors specifically dedicated to managing PWME who can build personal experience into common sense management, but are there sensible doctors looking for such jobs? There are probably a few, but not many.

 

I have severe ME and there really does need to be some guidelines on it Drs can refer to and the severe do really need expert Drs to manage complex distressing symptoms in ways GPs might be reluctant eg on sleep, pain, spasms beyond the basics GPs are happy with.. I've never believed in just scrapping everything but replacing a lot of it.
We can't trust severe MEs family's or GPs even to be understanding and Drs or trained OT often have to advocate on behalf of the patient that they genuinely do need their room sound proofed, or a down stairs bedroom or feeding tube or whatever annoying or bizarre things are going on which can cause friction in families.
In severe ME DRs are expert in symptoms, know the signs or com morbidities, understand it's shades and all the issues associated. One example might be if a female with severe ME rapidly gets worse needing a feeding tube, a hostile GP might immediately assume eating disorders and the psychiatric path whereas an expert ME dr would look at eating in the context of other issues, speech, weakness and see if it fitted the picture. I know people who have seen the ME expert dr paul worthley and found him really helpful, others less so. Personally, I don't think ME should go under general disability because it's level of weakness, its cognitive debilitation and sensory problems, along with ridiculous PEM effects are quite unusual.

I take your point about lack of treatment options making it a limited area to specialise in medically. Personally I don't see why hospital physicians or neurology or immunology couldn't take on the role for diagnosis, review and complex care, with OTs and Nurses to cover most severe care. I think already referral is not for all. When hiv came on the scene, how was that extra population absorbed by the NHS?

 

With Dr Bansal retiring that leaves very few doctors in the NHS left that could be of use to patients.

I'm not sure how Dr Weir would feel about heading a clinic again.

In London we still have Janice Main at St Charles and Gabrielle Murphy at the Royal Free (I think - it's been a while) but although both can be sympathetic to other ideas at times the clinics still run on a CBT/GE/Pacing treatment regime.

I've been seen yearly at a "CFS Clinic" yearly and there was no real monitoring, no support for benefits and no help when I really needed it.

 

Dr bansals severe patients are sad for their loss I've read. Bansal going is pretty much the old wave of experts nearly gone ...

 

I expect that would rapidly lead to MUS/PPS clinics.

 

re the place closing: Is it worth thinking about what info from their pages might be worth saving as evidence of spin? I don't seem to have bookmarked any of their pages, but others might have, and I know a lot was previously linked to from the old forum.

eg this from the linked to page:

 

I will just add that I want NIVE to either remove GET/CBT or limit its

That's interesting. My own CFS service locally gets nothing like this for the same treatment. They've done patient surveys and many don't improve or get worse, more fifty - fifty I think.

 

I get the impression that services connected with CBT and GET therapies can sometimes be worse than nothing.

Here is what the Barts service said on the draft NICE guidelines last time. This service replaced the Barts service:

Barts and services linked to it such as an in Essex and Sussex would not give letters for disability payments from what I heard from various people (not saying there might have been the odd exception).

 

This service:

https://www.elft.nhs.uk/service/308/Chronic-Fatigue-Service

 

Oh how the mighty have fallen- "Barts and services linked to it such as an in Essex..." I learnt that funding was cut by the CCGs by 50% last year, when I was researching for our local dilemmas in Suffolk & Norfolk.

In my view, the closure of services has nothing to do with NICE -(who I suggested might be/were a toothless giant in January) -NICE has become irrelevant or an excuse to marginalise patient- NICE is a very useful distraction to keep us occupied.
NICE is largely ignored or cherry picked- it is no longer the powerbase in the department of Health..NHS England is the new kid on the block.

it's about the privitisation of the NHS and the transfer of power and resource to CCGs and GPs.......

The creation of the CCGs allowed for abdication of all that had been worked towards or achieved (both good & bad) since 2004 or 2004-all commitments and pledges made under PCT steer no longer have to be honored, in my experience.

Some of the existing ME and CFS services have been consigned to Community Interest Companies - (on the behest of the Department of Communities and Local Government Social Enterprise Companies) - who only answer to Companies House where they are economical with the true about services, embroider facts or distorted in their annual returns- they are totally unaccountable...... The Executive's salaries are generous, just as so with the PCTS.

They are Landsleys Legacy- and I have become totally disillusioned by it all after 20 years of fighting the system. At least Labour tried with the Long term Conditions Framework. That should some commitment.

At the end of the day it's all about politics, power and patients are a nuisance, especially ME and CFS patients and carers. Is it any wonder why we are seeing a dwindling of the specialists doctors we so desperately need?

With CCGs we will see a total annihilation of most services.

We will just have to learn to fend for ourselves as best we can.
And I didn't even consider the "B" word!..... and I don't mean Boris...

 

I can assure Barts would be the last place I'd want to model good ME Drs on!! The idea would be that NICE would limit GET /CBT recommendations appropriately. The CBT model would no longer be such a basis for these clinics and that Drs fully behind the biomedical model would ge the ones running the show. Maybe a dream rather than idea...

Regarding the eating issue and severe ME, we know that eating disorders are sometimes inappropriately assumed. I was meaning for eating issues rather than weight loss but Barts says there's no evidence on weight?? , well I'm assuming there's been no research anyway so there won't be evidence and I had weight loss as part of my presentation, not even through lack of eating, so they know nothing really. How many severe did Monsieur White actually work with before he retired?

 

The ELFT (anything to do with the mental Elf?) has been a prime mover in piloting the MUS (or whatever they are calling it this week?) approach.
I don't think it is surprising that CFS clinics are closing while the psychs roll out their scheme to maximise their income from those with YUMS (Yet to be Understood Medical Symptoms/syndromes), ie CBT PACE style.

The second tranche is to then convince GPs that anyone with LTCs (long-term conditions), such as diabetes, asthma, rheumatoid arthritis can have their lives changed with an online course of CBT. They then don't need to visit their GP practice as often!
Meanwhile income from these courses goes to the companies run by the psych bunch and they get a nice little earner.

 

Are they really using the acronym YUMS or is that you being tongue in cheek? If they really are then:

YUMS?????? FFS!

 

Have to admit it's my tongue in cheek preferred version, but in the light of medical history it could be considered more accurate