ME/CFS services in the United Kingdom

New ME/CFS clinic opens in Aylsham

https://www.ecch.org/news/posts/2019/may/new-mecfs-clinic-opens-in-aylsham/

don't know any more.
anyone have any experience of this or their other clinics?

 

@Sly Saint the clinic is part of the therapy led Norfolk and Suffolk Service...They had been criticized for not offering geographical coverage in North Norfolk, hence Aylesham.

There is very little to say that is good about the Provider ECCH, or indeed about Gt Yarmouth and Waveney CCG.

Repeated complaints from patients and Patient / Carer Group about the service have gone unaddressed in Norfolk and Waveney. Suffolk CCG's, to their credit are continuing to engage with service users.

 

I am collating patient experiences of East Coast CH and will post any feedback from the "new" clinic which provides better access, not better services for those in North Norfolk.
I have been collating info on the service limitations and insufficiency which we will use to issue a formal joint group's complaint about poor service provision in Norfolk and Waveney.

• "... they follow NICE but only do pacing. However there are issues with the service. They are considering reintroducing cbt, there is no consultant and no biomedical testing for comorbidities etc. Access remains impossible for the most severe cases who are house and bedbound as there are no home visits. This move doesn't form a substantial improvement...."

• " ......with service specification, which is historic going back to about 2008. ECCH stated at the Health Overview meeting that CBT GET do nor form part of the spec for the service. That was ruled out on 2008 when we appraised NICE and it was rejected by us patients /carer representatives and that decision was accepted by the commissioners who were developing the service contract.. They cover children and have a physio who co ordinates for them. The OT Physio espe and most senior practitioners are decent and supportive though limited in resource. I have had a long working relationship with them over 15 years as a rep. They have been very helpful over time. It's the ECCH most senior Management and Waveney who are the real problem..."

• https://www.dailymail.co.uk/health/article-7015737/Three-patients-reveal-accusations-endured.html Jo Moss is one of their patients( or was...) who was featured here and was critical of local provision. Jo also has an outstanding complaint lodged.

 

https://www.ecch.org/your-health-1-1/me-cfs-team/ NOTE 6 CLINICS in 'STP' are a Norfolk and Waveney

and I in Suffolk!!!!!

 

There are a couple of reviews of ECCH services here, amusingly the second one complains they don't even offer CBT and GET as treatments

https://www.careopinion.org.uk/opinions/422141
https://www.careopinion.org.uk/opinions/253714

 

So, not an actual clinic. Got it.

 

They just hire rooms.......as and when......often not ME suitable ....

 

"Cambridgeshire Community Services
New CFS/ME booklet for GPs
CPFTs Chronic Fatigue Syndrome /Myalgic Encephalomyelitis (CFS/ME) service has updated its GP booklet – a guide to the diagnosis and management of CFS/ME in primary care. The team has also produced a poster for GP surgeries and waiting rooms. Aimed at both GPs and patients, the it highlights symptoms, how to refer, and a web link for self-help resource."

https://www.cambridgeshireandpeterb...-resources/latest-news/gp-news-2-august-2019/

separate link to GP booklet:
https://www.cpft.nhs.uk/Documents/CFS ME/GP booklet Apr 2019.pdf

may be of interest to @PhysiosforME

eta: haven't checked in detail to see what has changed

 

Somerset Partnership NHS
Job advert

https://www.nhsjobs.com/job/UK/Some..._specialist_interest_Chronic_Fatique-v1900072

 

Thank you for sharing this

 

I'm still not quite sure how much this concept differs from humours. It does, kinda, just so very little. It just uses different names like anxiety and trauma but otherwise it's quite frankly even less scientific given how thoroughly it has been falsified by now.

Like... blood I guess can be seen as the initial infection they pretend to take into account. Phlegm is clearly fatigue. Yellow bile is anxiety. Black bile is depression or trauma. How does the BPS crap seriously differ from that? 1% 5%? At best. If you squint. And hold your breath to starve it of oxygen.

You know, I think I'll refer to the BPS model as the humours from now on. It might as well be the same thing with just enough hand-waving to pretend it isn't.

 

Actually, I found the booklet quite 'neutral and uncontroversial!
It is better than I was expecting.....

 

They are recommending graded activity, goal setting and exercise as management strategies for ME/CFS.

So the booklet does not seem all that neutral or uncontroversial to me...?

 

The use of setback alone is completely inappropriate. It's not a valid term in this context outside of the ideological framing of "there is no disease, you can aim for full recovery" and deterioration, even if permanent and severe, is just a bump on the road to progress that is guaranteed if you just believe in it.

Goal setting is very charged as well. Creates a false emphasis on motivation, as if it played a role. Is "not projectile vomiting" a goal to someone suffering from food poisoning?

Rejecting reality and substituting their own, as is tradition.

 

Chronic Fatigue Syndrome (CFS)/
Myalgic Encephalopathy (ME)
Management Programme

joke?

http://www.srft.nhs.uk/EasysiteWeb/getresource.axd?AssetID=43129&type=full&servicetype=Inline

 

Self Help Information for Patients

https://www.cpft.nhs.uk/PDF/Miscellaneous/Patient Self Help Information Booklet May 2017.pdf

 

Lots to unpack here, but just gonna point out that that isnt even their usual definition of a boom bust cycle. That just sounds like a bust and more bust cycle.