ME/CFS services in the United Kingdom

Hutan

Hutan

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(Note - this post was actually made on 4 Jul 2022)


Note from the moderation team:
This thread is for posts about ME/CFS services in the United Kingdom generally.

If you have comments about specific services, please post on the relevant service thread (listed below or make a new thread).
We hope the threads for specific services will enable better monitoring of problems requiring advocacy efforts and of progress towards useful services.

NHS services England
United Kingdom: Bath paediatric CFS clinic (Dr Phil Hammond)
United Kingdom: Bedfordshire Chronic Fatigue Service
United Kingdom: NHS Birmingham and Solihull ME/CFS
United Kingdom: Derbyshire Chronic Fatigue Syndrome (CFS/ME) Service
United Kingdom: NHS East Kent Hospitals University - CFS/ME
United Kingdom: Hackney - Homerton Chronic Fatigue Service + Post Covid-19 service
United Kingdom: Leeds and York Partnership - CFS centre
United Kingdom: Liverpool University Hospitals ME/CFS service
United Kingdom: London - Persistent Physical Symptoms Research and Treatment Unit - Kings College London; South London and Maudsley NHS Trust
United Kingdom: London - Royal Free Hospital CFS services
United Kingdom: Isle of Man ME/CFS and Long Covid services (Manx, ME Support IOM)
United Kingdom: Lancashire Recovery College: ME/CFS
United Kingdom: Oxford Health NHS Foundation Trust; Oxford University Hospitals ME/CFS service
United Kingdom: NHS Lancashire and South Cumbria ME/CFS
United Kingdom: Newcastle-upon-tyne Hospital Trust
UK: Norfolk and Waveney ICB; ECCH ME/CFS Service
United Kingdom: Norfolk and Norwich University hospitals (NHS)
United Kingdom: North Bristol NHS Trust: ME/CFS clinic
United Kingdom: North Cumbria Integrated Care Trust
United Kingdom: South Cumbria CFS Service (Physical Health Psychology)
United Kingdom: South Tyneside and Sunderland - South of Tyne CFS service
United Kingdom: Nottingham ME/CFS Service
United Kingdom - Suffolk and North East Essex ME/CFS services
United Kingdom: Epsom & St Helier University Hospitals - South West London & Surrey ME/CFS Specialist Service (Bansal, Lazarova)

NHS services Scotland
United Kingdom: Scotland NHS Lothian ME/CFS clinic


Private services
United Kingdom: Optimum Health Clinic (Alex Howard)
United Kingdom: Dr Basant Puri of Brakespear Clinic
 
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This appears to be a new service(?) under Lancashire Care NHS trust.

Found this job advert:
"
Lancashire Care NHS Foundation Trust

Clinical Specialist Physiotherapist

Band 7

0.6 WTE (22.5 hours/week)

Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitus (ME) and Rheumatology

An exciting new opportunity has arisen for a keen and motivated Physiotherapist with experience of working with clients with ME / Chronic Fatigue Syndrome (CFS) to join a new multi-disciplinary team. We provide a service over a wide geographical area in Central Lancashire with a variety of clinic locations. This role will be based at the Minerva Centre Preston.

You will be delivering a full range of specialist Physiotherapy interventions including activity management, graded activity, energy conservation, relaxation skills and advice regarding daily living /work to both individuals and groups.

An important part of the role is also to provide a specialist resource/education offering expert guidance and information to other Physiotherapy staff and health and social care professionals.

The successful applicant will assess and manage a mixed caseload of patients with chronic fatigue both on a 1:1 basis and in groups. There will be opportunities for close interdisciplinary working and research and service development.

You will have experience of working as a physiotherapist within the speciality area of Chronic Fatigue as well as of improving and developing service and practice......"

It says:
"For more information on Lancashire Care please visit our website via Lancashire Care "

on that site, I did a search for Chronic fatigue syndrome:

"
Search results for: chronic fatigue

Cartegories
Chronic Fatigue Syndrome "

Error: Requested service hasn't been defined correctly or is empty.


so I'm none the wiser.

 
Another advert for similar job. This one at the Royal Free Hospital in London.

Current job advertisement for a part-time GET specialist physiotherapist at the Royal Free Hospital in London to cover maternity leave-
http://jobs.royalfree.nhs.uk/job/UK...rust/Chronic_Fatigue/Chronic_Fatigue-v1163506

Note this from personal specification document - “Experience of working with a wide variety of client groups, across the whole life course presenting problems that reflect the full range of clinical severity including maintaining a high degree of professionalism in the face of highly emotive and distressing problems, verbal abuse and the threat of physical abuse."
 
anniekim said:
Note this from personal specification document - “Experience of working with a wide variety of client groups, across the whole life course presenting problems that reflect the full range of clinical severity including maintaining a high degree of professionalism in the face of highly emotive and distressing problems, verbal abuse and the threat of physical abuse."
Click to expand...

That is common throughout medicine and psychiatry and is not limited to us...
 
I have now looked at the job details further for both GET therapists posts at CFS clinics in Lancashire and Royal Free. Although I took on board Snowleopard’s observation that the information in the personal specification about being prepared for threat of physical or verbal abuse may be standard in NHS jobs applications, it says further down in the Royal Free person specification that the -

"Ability to identify and employ mechanisms of clinical governance as appropriate, to support and maintain clinical practice in the face of regular exposure to highly emotive and challenging behaviour"

which kind of implies that it comes with the particular job, not the chance of encountering random abusive people in the course of working in a hospital. And since it's such a specific job that this person would be doing then I think you can say that the implication is that CFS/ME /MUS patients regularly have 'highly emotive and challenging behaviour'.

Also, if you compare the job description and person spec with the one for the Lancashire (preston) post in the OP- then it appears to me that the Lancashire one has used more generic NHS job description terms, tweaking them perhaps to suit this particular job, whereas the Royal Free one has put theirs together specifically for that job.

The Lancashire one says -

“Management of a clinical caseload of patients with highly complex and/or additional physiotherapy needs.
3.The post holder will be communicating a wide range of information to all levels across organisations including at strategic level. This may be very sensitive or highly contentious and require the post holder to use appropriate specialist skills to ensure co-operation with the recipient
10. Be able to use communication skills effectively in situations which may be sensitive, emotional or hostile. Deploy effective communication strategies to ensure that contentious information is imparted sympathetically to all parties. Provide therapeutic consultations with patients/relatives or carers when for example breaking bad news.
11. Address inappropriate behaviour in a professional manner.”

The above look quite generic to me, probably selected from a drop-down list, copied and pasted, perhaps just tweaked a little.

At the bottom it says:

“Does the job involve dealing with any distressing or emotional circumstances? – Please detail.

Dealing with elderly patients/ vulnerable adults/ patients with mental/ physical disabilities, patients with mental health problems. Exposure - direct How often? - frequent.”

But for “Dealing with conflict and aggression Exposure - Direct How often? - occasional”.

So we have the same job in the same Band (7) in two different areas of the country. At the Royal Free they seem to consider that the post holder will have regular exposure to highly emotive and challenging behaviour, but in Lancashire they only think that they may be dealing with conflict and aggression occasionally.
 
So this rather tells the lie to the claim by psychiatrists that most patients love their doctors and their therapists and the people who cause trouble are a tiny fringe minority of nutcases. It seems that they are expecting quite a lot of patients to be dissatisfied with the behaviour of their health professionals. In fact they are likely to be regularly abusive.

That is not quite how Dr Wessely painted things.
 
Jonathan Edwards said:
So this rather tells the lie to the claim by psychiatrists that most patients love their doctors and their therapists and the people who cause trouble are a tiny fringe minority of nutcases. It seems that they are expecting quite a lot of patients to be dissatisfied with the behaviour of their health professionals. In fact they are likely to be regularly abusive.

That is not quite how Dr Wessely painted things.
Click to expand...
Yeah he should read A Girl Behind Dark Glasses then he might be better informed
 
Perhaps forum members should apply, we have unique personal insights into ME/CFS
And we would be more effective then reality deniers (keep that part silent till after your hired).
Since the goal is to get us back into paid work this is a grand opportunity to practice what they preach :rofl:


Jonathan Edwards said:
That is not quite how Dr Wessely painted things.
Click to expand...
Gaslighting is not limited to politics :emoji_face_palm:
 
"Royal United Hospitals Bath


Fatigue ManagementClinical services
CFS/ME Adults
We're planning to relocate this service to a purpose build RNHRD and Therapies Centre at the RUH's Combe Park site in 2019, find out more here
Our chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) service provides a local, regional and national service for adults with CFS/ME and acts in a specialist advisory capacity for professionals working with adults with the condition.

The service was set up in 2005 as a result of the Department of Health's CFS/ME Service Investment Programme, which made £8.5 million available between 2004 and 2006 to develop services for people with CFS/ME."

http://www.rnhrd.nhs.uk/page/84

Expert team
includes:
Dr%20Esther%20Crawley.jpg

Dr Esther Crawley FRCPCH PhD
Consultant paediatrician
Dr Esther Crawley is the clinical lead for the CFS/ME service for children and young people which she started in 2004. She completed her medical training in Oxford and did a PhD at University College London and Great Ormond Street Hospital.

Dr Crawley is a Reader at the University of Bristol, researching CFS/ME in children and adults. Her research projects include: the epidemiology of CFS/ME in children; qualitative studies in to the impact of this condition in the families; the development of a Patient Reported Outcome measure as well as both treatment and prevention trials.

Dr Crawley is deputy chair of the CFS/ME Research Collaborative, sits on the NIHR panel for doctoral fellowships, is on the University of Bristol Council and is a medical advisor to the Association of young people with ME and the Sussex ME Society "


time to update the website too?
 
Sly Saint said:
"Royal United Hospitals Bath


Fatigue ManagementClinical services
CFS/ME Adults
We're planning to relocate this service to a purpose build RNHRD and Therapies Centre at the RUH's Combe Park site in 2019, find out more here
Our chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) service provides a local, regional and national service for adults with CFS/ME and acts in a specialist advisory capacity for professionals working with adults with the condition.

The service was set up in 2005 as a result of the Department of Health's CFS/ME Service Investment Programme, which made £8.5 million available between 2004 and 2006 to develop services for people with CFS/ME."

http://www.rnhrd.nhs.uk/page/84

Expert team
includes:
Dr%20Esther%20Crawley.jpg

Dr Esther Crawley FRCPCH PhD
Consultant paediatrician
Dr Esther Crawley is the clinical lead for the CFS/ME service for children and young people which she started in 2004. She completed her medical training in Oxford and did a PhD at University College London and Great Ormond Street Hospital.

Dr Crawley is a Reader at the University of Bristol, researching CFS/ME in children and adults. Her research projects include: the epidemiology of CFS/ME in children; qualitative studies in to the impact of this condition in the families; the development of a Patient Reported Outcome measure as well as both treatment and prevention trials.

Dr Crawley is deputy chair of the CFS/ME Research Collaborative, sits on the NIHR panel for doctoral fellowships, is on the University of Bristol Council and is a medical advisor to the Association of young people with ME and the Sussex ME Society "


time to update the website too?
Click to expand...
Tempting to do a rewrite ...but I will be good
 
Daisymay said:
Yes it was Liverpool I think but if my memory serves me right it was a good few years ago.
Click to expand...

Fred Nye was the lead at the time. I got a rather panicked phone call from him about it. It's so long ago I can't remember the year.

Been discussed on PR. Appears it was 2005.

And interesting letters here too, though not dated.

Never understood Dr Nye, he diagnosed me in 1992, and was very helpful. Then a few years later he went over to the dark side. And then this.
 
Just looking at the various regional NHS sites:
Bristol...pretty bad (as you'd expect), recommend Trudie Chalders book.

Worcestershire Health and Care trust: has some additional 'gems'
"
  • Personality – Evidence suggests that individuals with certain personality features are more likely to develop CFS/ME. Often, individuals with the condition have high expectations of themselves, are somewhat perfectionist and frequently view strength, ability to cope and independence as very important personal characteristics.
"

"
  • Beliefs and attitudes – there is now strong evidence that certain beliefs can play a role in the maintenance of the illness. At the outset, there is often a strong belief that once must ‘push on’ regardless of the level of fatigue. This can be counteracted later by a real fear of making things worse. Beliefs about the danger of an activity can therefore act as a troublesome maintaining factor."
"
Role of professionals – Some individuals may have experienced unhelpful interactions with health professionals, due to the confusion around the condition. This may have been in the form of inappropriate or lack of advice, misdiagnosis, or a failure to acknowledge the symptoms or the condition. This can cause real distress and alienation in a person suffering from and trying to make sense of the symptoms. Fortunately this is becoming more infrequent as education around the condition improves. "

really?

"
As a service, we cannot give hope that we can get rid of the symptoms. By its very nature, CFS is a persisting condition and there are no known treatments to cure it. However, by adopting the biopsychosocial model you can gain further control over the symptoms, reduce the effect that it has on your life and in turn, improve your quality of life and functional independence, despite the fatigue. "

https://www.hacw.nhs.uk/our-services/chronic-fatigue-syndrome/what-is-chronic-fatigue-syndrome/
 
Child and Adolescent Mental Health Services (CAMHS), Specialist Intervention Team at Newland House - NHS

"Complex mental health disorders might include:

• Acute psychiatric illness (such as bipolar disorder or schizophrenia)
• Anxiety / generalised anxiety disorder (GAD)
• Attachment disorder
• Depression / major depressive disorder (MDD)
• Mixed anxiety-depressive disorder
• Myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS)
• Obsessive compulsive disorder (OCD)
• Post-Traumatic Stress Disorder (PTSD)
• Self-harm, attempted suicide, suicidal ideation / thoughts
• Severe phobias
• Somatization / psychosomatic disorders
• Substance misuse
• Unresolved bereavement "

https://www3.northamptonshire.gov.u...ialist-intervention-team-at-newland-house-nhs

you can't get more blatant than this (can't find an emoji to adequately express my anger).

eta: calmed down a bit now. what is soooo annoying is 'they' say, ah well prescribing CBT doesn't mean that we think its a psych problem, lots of patients with different illnesses have CBT to help them cope.........I can't see cancer on the listo_O

eta2: just realised that link was to Northamptonshire County council

this is the direct NHS link
https://www.nhft.nhs.uk/camhs
https://www.nhft.nhs.uk/camhs/venue...tion-team-camhs-psychiatry-newland-house-299/
 
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