RiME: Norfolk Services: Oasis or Mirage? December 2007

Campaigning for Research into ME (RiME)

Norfolk Services: ‘Oasis or Mirage’?

Many appear to be of the opinion that a misleading impression of the current Norfolk Services has been given by

(1) People present at the last APPG Meeting

(2) The official minutes of that meeting, which RiME is challenging

(3) Other sources ie the BRAME Letter to APPG members May 14 2007, which called for funding of existent ‘CFS/ME’ clinics to continue. The letter says:

A specialised biomedical clinic on ME/CFS (Norfolk) … must not be allowed to close.

Then, on a wider note:

If these specialised biomedical clinics close…

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There seems to be a common concern around the UK that politicians might be misled into thinking ME patients can be treated at the ‘CFS/ME’ clinics set up following the CMO Report and that they will, consequently, take their eye off the ball re biomedical research.

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Having consulted with the Norfolk Group [M.E. Support – Norfolk] and other sources, to our knowledge:

1. Dr Mitchell retired from the ‘CFS/ME’ Service at the James Paget Hospital Norfolk Sept. 2006 (Source: Norfolk Group).

2. There is no current ME service in Norfolk. Instead, there is a Chronic Fatigue Service – see www.erythos.com/RiME , clinics folder, Norfolk file. Here are extracts (the word biomedical doesn’t feature):

Front Page: Recommendation… the transfer of the remaining staff working within the Chronic Fatigue Service from The James Paget Healthcare NHS Trust to Waveney PCT. The… Executive Committee has agreed this is best for the clinical care of patients…

1 Introduction: …Patients are assessed by a medical practitioner at either The James Paget or Northgate Hospitals before starting on a program of therapy led intervention aimed at helping the patient to better manage their own condition…

4.2 Staffing: The Head of Intermediate Care and Rehabilitation is responsible for the service which is led by a Specialist Occupational Therapy Practitioner…

Appendix 1 New Service Model: 1 Reduced medical follow-ups 2 Group intervention rather than individual 3 Enable GPs to better support their own patients 4 Patients discharged once goals have been met… Moving to a therapy-led service…

3. The Great Yarmouth and Waveney PCT will be recommending tennis, badminton, golf, dance… to ME patients – website, Ibid.

 

Selection of Letters from Norfolk

Leader of Norfolk Group

Dear Dr Turner,

I am unable to attend the APPGME meeting on 12 July, but wondered whether you could read out these comments ‘by proxy’ at the meeting, please:

Here in Norfolk, we apparently (and I have to say “apparently”, since it is proving impossible to get a straight answer from anyone on this) no longer have a CFS/ME clinic headed by a consultant, but instead a ‘Chronic Fatigue Syndrome Service’, which, according to JG (Chief Executive, Norfolk PCT) “…incorporates a mix of GPs with a Special Interest, enhanced therapy input and improved access to other specialist input such as CBT.”

From my recent enquiries, it would also appear that much of the ‘treatment’ and ‘consultation’ is carried out over the telephone.

It is also clear that the general feeling in this part of the country is that anything other than biomedical treatment and/or research where Myalgic Encephalomyelitis is concerned is a waste of time, money and resources at best and actually harmful (both psychologically and physically) to ME sufferers at worst.

King’s Lynn: …I think the Norfolk PCT is a load of pants as far as neurological ICD-ME is concerned.

There is currently no specialist residing at the Great Yarmouth ‘Chronic Fatigue’ Centre but that’s no loss as these centres were developed for people with chronic depression by a psychiatrist working outside this field, and cannot address the needs of ME patients.

Dance classes, badminton, tennis… being recommended… Obviously they don’t know that ME and CFS are not the same and that exercise is very dangerous for people with ME…

Norwich: It was my daughter x that had ME… I always found the services from the James Paget sadly lacking and was very unhappy with their extremely unhelpful attitude…

Daughter waited best part of year but told we had to have appointment first thing in morning as we live relatively near (20 miles or so). x had very bad mornings, asked really nicely for late morning/early afternoon as so difficult – totally unwilling to help – turned appt down as impossible to get there at that time of day, rang back couple of months later, still offering same time – ABSOLUTELY refused to offer anything other than 9am – WE had to have that time. As previously all they’d done with my son was give a sympathetic explanation and suggest counselling we turned appt down, very unimpressed and x NEVER WENT THERE.

FOR A DEPT SUPPOSED TO BE EXPERTS, they seemed to have an extremely poor understanding of what living with cfs/me on a daily basis is like.

Diss: After a year’s wait I saw Dr TM, who said I had ME but my difficulties could also be attributable to the fact that I was seriously abused as a child by my family.

He talked about the diary I kept for him and said I was doing too much am. and too little pm. I needed to pace more and do a little then rest a lot. I needed to relax so he gave me a relaxation tape. He suggested I get help with food preparation and he supported me by writing a letter to Social Services. To date this hasn’t happened.

He prescribed melatonin for bad dreams and sleep.

Now that Dr M has retired and the clinic is closing we can no longer get melatonin on prescription. We can no longer talk to Dr M for advice. Only occupational therapists give advice and they are not doctors! We get psychojumbo now, nothing physical. The clinic needs to close now.

Norfolk – Anonymous

1998, TM – confirmation: fulfill criteria.

1999, TM – OT to send information pack on pacing and relaxation.

2003, SN – distressing experience!!
* Emphasis on psychological.
* No compassion or concern for physical difficulties.
* Hadn’t bothered to read case notes – received standard lecture.
* Decided I was showing (unspecified) ‘behavioural changes’.
* I was at fault for ‘wrong thinking’ – “You must change, you must change.”
* Needed to see psychiatrist for counselling.
* Needed Cognitive Behaviour Therapy.
* Letter to GPs –
“Her main problems are tiredness.” (Might be helpful if N had a better
grasp of the English language.)
* Hadn’t bothered to check letters, which were signed by the secretary.
* DAMAGE DONE, INCALCULABLE.

Sheringham: … agnostic toward M; not sure if what he had to offer was much different to what one could get from a decent GP surgery. But please note this was a Fatigue Unit, not specifically about ME (M retired Sept. 2006); results, therefore, will be skewed and could be used to mislead as far as neurological ICD-ME is concerned.

M was not the only doctor who practiced there; there was a Dr N and reports on her seem far from positive.

But all that is bye the bye. The Great Yarmouth/Waveney PCT has now set up a ‘Chronic Fatigue Service’; it is not about ME and I fail to see how it can move ME patients forward. The PCT is advising GPs to prescribe Golf, Tennis, Badminton, Dance… Honestly…

One wonders if the ‘East Anglia Caucus’ at the House of Commons 12/7/07 had done their homework…

Aylsham: The Norfolk & Suffolk CFS/ME Service, based in the Occupational Therapy Dept. of Lowestoft Hospital, is no longer clinician-led (unlike the ‘chronic fatigue service’ previously headed by Dr TM at the James Paget Hospital, Gorleston). In the words of the Director of Public Health, Norfolk PCT & Norfolk County Council, “Access to the clinic is by referral from a GP and new patients are seen by GPs with a special interest. Ongoing management of patients is therapist-led.” As the Chief Executive of Norfolk PCT puts it, the new service model, approved in 2005, is one which “incorporates a mix of GPs with a Special Interest, enhanced therapy input and improved access to other specialist input such as CBT”.

There appears to be two ‘GPs with a special interest’, at least one of whom, judging by comments from a number of patients, clearly views ‘CFS/ME’ as a biopsychosocial – as opposed to biomedical – problem. The GPs diagnose, but do not provide ongoing consultancy; medication is suggested by the Occupational Therapists (whom patients generally find supportive and helpful) and such suggestions are fed back to patients’ GPs for prescription. Any follow-up consultation is based on the completion of a questionnaire and assessed on a need/priority basis.

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Paul Davis

Email RiME

Campaigning for Research into ME (RiME)

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