ME/CFS services in the United Kingdom

It's the sort of thing we used to have, basically from the start of the NHS, before they shut and sold all the local hospitals, in favour of only having one or 2 national centers for a medical speciality - otherwise known as centers of excellence, that even if injured/sick/ill people could get to them their relatives couldn't, and of the few that could they imposed punishing car park charges so as to 'discourage' this.

Stands to reason, if someone needs to go to hospital then they must have something wrong with them, so send them to the relevant specialty hospital, even if this is 200 miles away, for a routine outpatients appointment.

Problems may occur when people have more than one thing wrong, can't afford a chauffeur, can't afford to take a week off work for an appointment that the consultant can't be bothered to turn up to, what with being 200 miles away in your hometown, and not in the center of excellence 200 miles way from the place you could have car shared from.

Recent examples of this would seem to include the bedfordshire fatigue service saying that whilst they don't offer anything for moderate or severe pwME who are housebound they are of course free to go somewhere in London, as London is of course is in everyone's house and therefore much easier for someone whose house/bed bound to get to.

I'm pretty sure that if people couldn't get to a doctors the doctor, as a matter of routine, used to come to them. If people were housebound then people on bicycles used to visit them. But due to efficiency these sorts of things don;t really happen any more. Housebound people are expected to get to the places that treat people, or simply not bother anyone, and then stump up £5K for a little fire and a box, if the problem was serious enough to require it.

 

Buzzword indeed - https://www.england.nhs.uk/personalisedcare/supported-self-management/

The wikipedia page on disease management is quite good in defining the broad territory https://en.wikipedia.org/wiki/Disease_management_(health)

 

BEWARE, beware of "Social Prescribing" it's potentially a can of worms( with Government drive and funding streams... loads of money!?)

Round Table Academy guru ..In addition Helen is a GP Principal and Chair of the National Academy for Social Prescribing (NASP). She held the title Chair of the Royal College of General Practitioners (RCGP) until Nov 2019.

Professor Helen Jayne Stokes-Lampard MBBS (Lon), PhD, DSc, MD, FRCGP, FFPH(Hon), DFSRH, DRCOG, LOC(IUS)

Birmingham Medical School
Professor of GP Education

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h.j.stokeslampard@bham.ac.uk
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Helen Stokes-Lampard, Professor of GP Education, is currently on a three-year secondment from the University (July 2020-23) as Chair of the Academy of Medical Royal Colleges (AoMRC). The Academy of Medical Royal Colleges is the national body that represents and coordinates the UKs 23 Royal Colleges, Colleges and Medical Faculties that in turn represent all the main medical specialities and award higher professional medical qualifications. AoMRC ensures that patients are safely and properly cared for by setting standards for the ways doctors are educated, trained and monitored throughout their careers.

In addition Helen is a GP Principal and Chair of the National Academy for Social Prescribing (NASP). She held the title Chair of the Royal College of General Practitioners (RCGP) until Nov 2019.

 

NHS Southtees CFS service website unchanged
"We combine the evidence-based approaches of graded exercise therapy (GET) and cognitive behavioural therapy (CBT), with activity (lifestyle) management. We offer a maximum of 12 appointments which may take place in a group setting or individual appointments. Therapy will be delivered by a specialist CFS Therapist. You will be expected to practice the strategies you have learnt between appointments and take an active role in your therapy."

https://www.southtees.nhs.uk/services/centre-for-clinical-infection/cfs/the-cfs-service/

 

I think this organisation and its medical team should be asked for a statement about their reading of NG206 bearing in mind CCG enthusiasm to embrace the principle behind their approach.

College of Medicine Trustees
e.g.
Dr Michael Dixon LVO, OBE, MA, FRCGP

Michael is a Devon GP and Co-Chair of the National Social Prescribing Network. He has held numerous national leadership roles including:- The first Chair of NHS Alliance (1998-2016), President of NHS Clinical Commissioners and as a leader within the GP/clinical commissioning movement. He is currently Chair of the College of Medicine, Chair of The Institute for Social Prescription and Medical Advisor to HRH The Prince of Wales. He is Visiting Professor at University College London and at the University of Westminster, a Senior Fellow in Public Policy (University of Birmingham) and an Honorary Senior Lecturer (Peninsula Medical School Exeter). He is author of “Time to Heal” Unicorn Press Nov. 2020.

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I saw this doctor once (I was under a female GP at the same practice in Devon from 1999 - 2005) on the recommendation of my next door neighbour, who told me his approach had done wonders for her.

He told me he could 'fix' my ME, but all he offered was rubbing an acupuncture pressure point on the back of my neck and an elimination diet approach, starting with gluten. Needless to say, this did nothing to improve my ME...

He also did a lot of work with the King's Fund on social prescribing. He is a friend of Prince Charles.

 

I think the charities should help NICE issue some qualifying statement about this use of public money for ME service provision as it could get it so badly wrong.

 

Occupational Therapist

"To participate in CPD and other departmental activities, including training in principles of Acceptance and Commitment Therapy and Mindfulness as appropriate."
https://www.jobs.nhs.uk/xi/vacancy/916838125

 

No travel to patients homes then.

 

This post has been copied and the following discussion moved from the NICE guideline discussion thread.

Anna Gregorowski is fully BPS and a Crawley follower. She ran the CFS paediatric clinic at Gt Ormond St. It is now based at UCLH.

 

Thanks for pointing that out, it's not a name I'd come across before - or at least attached any significance to. I did a bit of searching - although the BACME bio gives her as "clinical lead of University College London Hospital TRACCS (Treatment and Rehabilitation of Adolescents and Children with Complex Conditions service)" Gregorowski does not appear on the current UCLH CFS/ME team list http://www.childrenandyoungpatients.uclh.nhs.uk/meet-the-team/ nor on the TRACCS page https://www.uclh.nhs.uk/TRACCS where the clinical lead for "adolescent medicine" is given as Terry Segal .

Gregorowski is a third named author on a couple of 2021 date papers that give her affiliation as TRACCS https://adc.bmj.com/content/archdischild/106/Suppl_1/A485.2.full.pdf and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8088977/ but I would have thought if she still had a role at UCLH she would appear on a current web page somewhere. Maybe another BPSer whose influence is waning.

 

According to Facebook posts, she is still very active in clinics. She is a nurse who has done a PhD in CFS! She was the clinic lead at GOSH. There was a doctor affiliated with the clinic there, but I as far as I know, youngsters rarely got to see him.

Other parents have said that she stops the doctors writing letters for benefit applications, though they do liaise with schools. The clinic still pushes a limit of 4 hours on total screen time per day. Though she was unable to give me a reference or rationale for that when I asked in 2011. (This is not related to advice not to watch screens in hour before bedtime)

I don't think she's changed her views at all, except altering the theory from deconditioning to dysfunction.

 

It seems that TRACCS is just a renaming and possible expansion of the old CFS service: https://www.uclh.nhs.uk/TRACCS

"Living with CFS/ME can be hard, but we are here to try and make it easier to get life back on track.

The service has been successfully treating Chronic Fatigue Syndrome (CFS) and Medically Unexplained Symptoms (MUS) for the past 16 years. We are part of a teaching hospital with state-of-the-art facilities and have a specialist team of doctors, nurses, physiotherapists, occupational therapists, psychologists, dieticians and social worker.

Our nationally recognised service helps children and young people (up to 19 years) who are living with CFS/ME, chronic pain, medically unexplained symptoms, non-epileptiform seizures and chronic headaches.

• We work collaboratively with young people and families and plan the programme together
• We provide advice on reversing the vicious cycle that happens when fatigue, pain and inactivity reduces the ability to do things and time away from school affects schoolwork, friendships and mood
• We have an adolescent ward for young people struggling with CFS/ME who may need to come for regular in patient admissions for more intensive input

• We liaise with schools and help with re-entry into school
• Our multidisciplinary team runs adolescent clinics, groups and day care ward reviews
• We provide tailor-made input from occupational therapy, physiotherapy or psychology
• We have education groups for pacing/activity management, managing physical activity and improving sleep.
• We provide advice on disordered non-refreshing sleep
• We provide integrated specialist psychological support to young people and their families as well as psychology-run ‘coping with CFS’ groups.

Above all, we deliver a high quality and responsive CFS service that maximises health and wellbeing for children, young people and families."

 

Based on the 'deconditioning model' of 'CFS':

https://www.uclh.nhs.uk/patients-an.../introduction-chronic-fatigue-syndrome-me-cfs

 

Segal is the paediatrician. I am fairly sure Gregorowski is still with us. She is a nurse specialist.
The unit has come in for quite a lot of criticism. Segal and maybe Gregorowski produced something that showed interest in Lightning Process.

 

Child and adolescent chronic fatigue syndrome/myalgic encephalomyelitis: where are we now?
April 2019
Current Opinion in Pediatrics 31(4):1

The links I posted for UCLH are behaving weirdly and not displaying fully - but I just thought it odd that Gregorowski was previously listed as clinical lead for the TRACCS unit (as Nurse Consultant) but Segal is listed as the paediatric consultant for UCHL CFS service on that service's page, while on the TRACCS page Segal is listed as the clinical lead for "adolescent medicine" with Gregorowski not mentioned anywhere; her only Google presence is on old GOSH pages and FB and Linked In. Anyway all probably of no great consequence.

 

So CFS/ME patients are seen alongside those with what the NHS defines as somatisation and functional neurological disorders.........

I found Dr Murphy was the same in terms of stopping physiotherapists from writing letters for social services and benefits. She also diagnoses CFS/ME patients with FS.