ME/CFS services in the United Kingdom

Outraged at Norfolk CCGs and East Coast Community Health slipping this one through- read it and weep!

cc Tuller, Edwards, Speight, LSHTM, Kerr, Pheby, MEA, plus others BCC

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Joint Trust Guideline for the Management and onward referral of: CFS/ME (ChronicFatigue Syndrome / Myalgic Encephalopathy) in Children and Young People

Date of approval:08/05/2019

file:///Users/barb/Downloads/Chronic-Fatigue-Syndrome-in-Children-JCG0051-v3.pdf

For Use in:

All out-patient and in-patient paediatric settings

By:

All paediatric medical and nursing staff. Allied health professionals particularly children’s occupational therapists and physiotherapists

For:

Children and young people with CFS/ME


Assessed and approved by the:

Clinical Guidelines Assessment Panel (CGAP) inconjunctionwithJPUH. Chairsaction

Date of approval:

08/05/2019

Ratified by or reported as approved to (if applicable):

Clinical Safety and Effectiveness Sub-Board

To be reviewed before:

This document remains current after this date but will be under review

08/05/2022

To be reviewed by:

Dr A S
Reference and / or Trust Docs ID No:

JCG0051 id 1283

Version No:

3

Description of changes:

Reviewed and referral information updated

Compliance links: (is there any NICE related to guidance)

Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy), NICE clinical guideline 53,

If Yes - does the strategy/policy deviate from the recommendations of NICE? If so why?

No deviation

 

Cut and past into Google search file:///Users/barb/Downloads/Chronic-Fatigue-Syndrome-in-Children-JCG0051-v3.pdf (Facebook) is blocking me uploading this as a pdf file.

Attached belwow

 

The above has history, form and legs!

http://80.6.88.110/publication/download/chronic-fatigue-syndrome-in-children-jcg0051-v2-id-1283

 

Job ad in Liverpool
Senior Practitioner Psychologist

https://www.reed.co.uk/jobs/senior-practitioner-psychologist/41516087

 

job ad (Cornwall)

https://www.jobs.nhs.uk/xi/vacancy/916435336

so instead of GET it's now "Graded Activity and Energy Management, Lifestyle Management"
and instead of CBT
"Applicants with substantive post qualification experience and with all or some background in neuro rehabilitation, mental health, sensory processing, community rehabilitation and cognitive and acceptance, compassion and/or behavioural approaches"

well, I'm not sure what that is. Some kind of ACT(?)

 

another job
in Nuneaton

https://uk.talent.com/view?id=a401b72b13c3

fyi @PhysiosforME

 

Interesting to see two different solutions to the dilemma.
The first one wants to carry on the same with neatly changed words.
The second seems just 'help-we need a Therapist to deal with these patients.'
It must be challenging writing a job description when nobody knows what job to do.

 

Or what they're supposed to be treating, or how written English works.

Be awfully nice to see someone recruiting a practitioner to engage with local patients and ask what would help them.

 

I wonder if this is with David Strain.

 

I am not sure that they do or have done CBT in Cornwall CFS/ME service. I went to see the psychologist there about 5 years back - it was quite intense...certainly not what I was expecting. Quite a bit of raking around initially into my childhood, and even some interest back as far as my grandmother!! Given that I was by then into my 60s and had actually seen many counsellors over the years, I didn't find that part of the approach very helpful, (though it might be useful for some people.). We did move onto other approaches but it's rather faded in the mists of time.

I seem to recall it was the only thing on offer to me at the time, as I had already been there in the past but had had a bit of a relapse and wasn't coping mentally. They didn't put me forward for anything else as I wasn't considered severe enough for physio needs.

 

Royal Free job ad:

https://findajob.dwp.gov.uk/details/5609041

didn't know it was a 'centre of excellence'

 

job ad:

https://www.nhsjobs.com/job/UK/Hert...e/MSK_Chronic_Fatigue_Syndrome-v3111553?_ts=1


@PhysiosforME

 

private service:
refers to 'chronic fatigue' throughout.

https://www.klearminds.com/issues/chronic-fatigue-syndrome-counselling/

 

From @Sly Saint 's post above

I don't know if anyone would like to have a go at reporting them to advertising standards. I haven't the spoons at the minute.

https://www.asa.org.uk

 

Have contacted Cath from Central London and a NICE Stakeholder......

Dealing with Chronic Fatigue Syndrome
Visit the following links for further information on our locations that can support your CFS:

• London City – Liverpool Street EC2
• West London – Kensington, W8
• Central London – W1W 6HE

Book Appointment
Email Us Now
Call us 0333 772 0256

 

The topic of ME services within the NHS was recently discussed at a ForwardME meeting. This was led by the charity reMEmber, who made some good points. I'm going to duplicate here, because I have a feeling this ForwardME link will likely change and may disappear.


reMEmber’s observations on the ME/CFS services in the NHS

1. These services were set up more than ten years ago but there has been no national review of them. The model was not to our liking from the start. Our preferred model would have been along the lines of that formerly run by Professor Tony Pinching at Barts, with a consultant who would see all patients referred to the service, who could prescribe medicines, and backed up by a small team of experts eg occupational therapist, community nurse.
2. There is not comprehensive coverage. Some places have never had a ME/CFS service. In other places there was once a service which has now closed down. We believe that there is no service at all in Wales and not much in Scotland.
3. Some clinics have no doctor attached. In others there is a doctor but he or she may be only part-time. GPs with a Special Interest have been shown not to be the answer; patients need to see an expert doctor, but many do not see a doctor at all at their ME/CFS clinic.
4. The deficiencies in these services were highlighted in two important reports in 2017. “Specialist treatment of CFS/ME; a cohort study among adult patients in England” by Bristol University found that two-thirds of patients seen by those services reported, after one year, that their condition was only a little improved, unchanged or worse. Five years after being seen 85% of these patients reported they still had CFS/ME, 9% said they were uncertain and only 5% said they no longer had the condition.
5. The second study “Spotlight on specialist services; UK healthcare for people with ME”, produced by AFME found that less than half of the Clinical Commissioning Groups (CCGs) and their equivalents in Northern Ireland, Scotland and Wales commissioned a specialist service for CFS/ME and less than a third recorded any data on how many people in their area had the illness.
6. Early, accurate diagnosis is essential, but patients are not seen early enough and there is a high rate of misdiagnosis by GPs (40% at Newcastle and Barts for example)
7. Many centres have no domiciliary service or provision for the severely affected who cannot get to an out-patient facility. There is nowhere with an in-patient facility for ME/CFS patients and the ME/CFS clinics do not provide for children with the illness.
8. Therapy in the centres is almost entirely CBT or GET (because of NICE and PACE). There are some exceptions; when Dr Amolak Bansal (Immunologist) led the South West London and Surrey service they offered Vitamin B12 by injection, Vitamin D3, mindfulness meditation, hormones including melatonin for sleep disorders, antivirals, antibiotics and Pacing – the therapy preferred by most ME/CFS people. A key point was that these therapies were offered on a personalised basis (not “one size fits all”). We attended their tenth birthday party in 2016; a number of past patients were there, and all said how improved they felt in mind, body and spirit – they knew they were not cured but they were able to manage their condition much better.
9. reMEmber has, on a number of occasions, brought these shortcomings to the attention of the DHSC and NHS England. Sir Nicholas Soames, when an MP, and the Countess of Mar have both asked Questions on our behalf in Parliament, but the answer is always the same – that provision for CFS/ME is a matter for the local Clinical Commissioning Groups (CCGs). Our attempts to engage CCGs on this subject have been unsuccessful; looking at ME provision seems to be very low down on their list of priorities.
10. However, with the re-organisation of Forward-ME and with the new NICE Guideline in mind, now may be a good time to focus the Health Departments once more on this subject. A united Forward ME would carry much more weight than an individual charity. We suggest pressing for a thorough review of the ME/CFS services within the NHS with a view to establishing a comprehensive, nationwide service. reMEmber recommends:
    • All patients to be examined by an expert consultant physician
    • Prompt, accurate diagnosis
    • A domiciliary service for the severely affected
    • A dedicated service for children and young people with ME/CFS.
    • Multi-disciplinary teams in all centres

Janice and Bill Kent
reMEmber
Charity no.1077807
July 2021