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
 

Attachments

Attachments

Job ad in Liverpool
Senior Practitioner Psychologist
You will work in the Division of Specialist Medicine. A review is underway of psychology in this Division, with a view to expansion in the next financial year. In the first instance, you will be working in services for people with Chronic Fatigue Syndrome, HIV and diabetes. Opportunities are likely to arise to move on into other areas in the future, as the service develops.
Click to expand...
https://www.reed.co.uk/jobs/senior-practitioner-psychologist/41516087
 
Last edited by a moderator:
job ad (Cornwall)
Applicants with an advanced understanding of Chronic Fatigue Syndrome/ ME are invited to apply to join a small specialist biopsychosocial team in Cornwall. The Cornwall CFS/ME Service comprises a Specialty Lead, a Consultant Physician, specialty Doctor and 3 x Occupational Therapists and 1 x Consultant Lead Clinical Health Psychologist. We are a busy and Cornwall wide service, we support medical and therapy trainees and host placements for student and post graduates from the University of Plymouth and University of Exeter.

We offer a robust support programme to new staff to join with Research OT’s, Special interest groups in CFS/ME and Pain and Fatigue locally and nationally to ensure best practice and ongoing peer support.

The role is to provide complex, functional, cognitive, affect and emotional assessment and intervention to patients with this debilitating condition, as part of a collaborative occupational approach to patient rehabilitation and care.

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 to working and supporting people with medium to long term conditions are desired. A high level of understanding and knowledge of working with people with Chronic Fatigue Syndrome/Me, post viral fatigue and post viral syndrome and varying pain presentations is essential.

Applicants will need to be able to provide tailored programmes of care with a good knowledge of Graded Activity and Energy Management, Lifestyle Management, Fatigue and Pain interventions with excellent goal setting and rapport building skills to help patients with these complex difficulties. You will also have some experience of working with children and young people and in the present climate have knowledge of post-covid syndrome to add to your knowledge and therapeutic skills. You will be expected to support other senior clinicians in the training and professional practice requirements of other team members and led on professional practice for your professional group liaising with the Senior Occupational Therapist as necessary.

The post holder would be expected to deliver services in the community, by video conferencing, at hospital venues and other community facilities. The post holder will be expected to support the delivery of the ME Management Programme (MEMP) which is the service condition specific group work programme which runs 4/5 times a year across Cornwall. The post holder will be expected to manage their own caseload and time to a high standard. Supervision, research and ongoing Continued Professional Development opportunities are fully supported and encouraged. .
Click to expand...
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
Occupational Therapist or Physiotherapist

George Elliot Hopsital

Full / Part time

Working with Cronic Fatigue Patients

  • Specialised, experienced practitioner employed to take a lead role in planning, co-ordinating and delivering the Therapy Service with Chronic Fatigue Syndrome (CFS) patients.
  • To work in close liaison with the Therapists within Pain Management (band 8a and Band 7), CFS Consultants and wider MDT to ensure best treatment
  • To provide specialist Therapy assessment, treatment and advice in lifestyle management and adaptations to patients and their families / carers.
  • To provide advice to junior Therapy colleagues and the multi-disciplinary team, with regard to Therapy intervention.
  • To supervise, educate and assess the performance of junior Therapy staff and assistants within the speciality, as necessary.
  • To be a Fieldwork Educator, supervising and assessing Therapy students on placement.
Click to expand...
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.
 
Sly Saint said:
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(?)
Click to expand...

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:
Summary
Applications are invited to apply for a part-time 0.6 WTE band 7 experienced Clinical or Counselling psychologist to play a key role in The Fatigue Service at The Royal Free London NHS Foundation Trust.

This centre of excellence includes two psychology posts, two physiotherapists, a nutrition service, the practice manager, an administrative assistant and a physician, as well as trainee psychologists and physiotherapists who do placements in the service throughout the year.

The physician performs initial assessment and diagnosis with a view to referring to the MDT for treatment of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) and other fatigue syndromes associated with long term conditions (LTC) according to the evidence base and the NICE guidelines.

You will be a HCPC and BPS registered clinical or counselling psychologist; you will have at least two years relevant post registration experience. You will have the ability to prioritise and manage a complex workload, be proficient in patient assessment, have an experience in the delivery of 1-2-1 and group therapy and have some experience and preferably qualified to deliver clinical supervision.
Click to expand...
https://findajob.dwp.gov.uk/details/5609041

didn't know it was a 'centre of excellence'
 
job ad:
GP with special interest in Chronic Fatigue Syndrome
NHS Medical & Dental: Salaried GP
GP post with special interest in Chronic Fatigue Syndrome

Working within the CFS & Persistent Pain Service, providing diagnosis Hertfordshire wide but based at Kingsway Health Centre, Stevenage

We are a highly specialist multi-disciplinary out patient service, offering assessment and intervention for adults with CFS and / or persistent pain. The multi-disciplinary team consists of Clinical Psychologists; Physiotherapists and Occupational Therapists, as well as an administrator and forms part of the Hertfordshire Community NHS Trust integrated Musculoskeletal Service.
Click to expand...
https://www.nhsjobs.com/job/UK/Hert...e/MSK_Chronic_Fatigue_Syndrome-v3111553?_ts=1


@PhysiosforME
 
private service:
refers to 'chronic fatigue' throughout.

Counselling can help you cope with the physical symptoms and negotiate the psychological and emotion impact of CFS.

A chronic fatigue counsellor can show you how certain patterns of thinking and behaviour can trigger a cycle of low moods and feed an emotional and physical downward spiral. You can learn alternative ways of perceiving and responding to your experience which help you manage in a way that provides more relief during the difficult times and enhances your ability to get more enjoyment, comfort and ease in your journey with or through the illness.

For some people counselling for chronic fatigue syndrome can be focused on helping them adjust to daily life with the condition and managing their symptoms. Others find psychotherapy can provide support and useful psychological insights as they seek to cure their symptoms through alternative medicine routes. Some people find complementary therapies such as meditation, acupuncture, naturopathy and homeopathy can enhancing coping abilities and in some cases cure the physical symptoms altogether.

Those who take care of people with chronic fatigue syndrome can also benefit from counselling. Making sacrifices to care for a loved one can lead to feelings of anxiety, stress, depression and/or isolation, and counselling can provide helpful guidance and support on how to cope in the best way possible.
Click to expand...
Cognitive Behavioural Therapy (CBT) for CFS
Cognitive behavioural therapy for CFS is the most commonly recommend therapy intervention provided on the NHS because it is evidence based, time limited and therefore cost effective for NHS budgets.
Click to expand...
https://www.klearminds.com/issues/chronic-fatigue-syndrome-counselling/
 
From @Sly Saint 's post above

For some people counselling for chronic fatigue syndrome can be focused on helping them adjust to daily life with the condition and managing their symptoms. Others find psychotherapy can provide support and useful psychological insights as they seek to cure their symptoms through alternative medicine routes. Some people find complementary therapies such as meditation, acupuncture, naturopathy and homeopathy can enhancing coping abilities and in some cases cure the physical symptoms altogether.
Click to expand...

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
 
Sly Saint said:
private service:
refers to 'chronic fatigue' throughout.



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

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
 
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