RiME: Sussex Services June 2009

RiME: Sussex Services 13 June 2009

Campaigning for Research into ME (RiME)  www.rime.me.uk

Sussex Services

Sussex wide CFS/ME MDT service http://rwstgp.org.uk/site/cfs.html

Referral criteria

Patients accepted as referrals into the Sussex CFS/ME MDT need to fulfil the following criteria;

  • Aged 16 or above, but no upper age limit
  • Under 16s should be referred to Acute or Community Paediatrics or CAMHS
  • A primary complaint of unexplained fatigue which is disabling and affects physical and mental functioning.
  • No clear alternative medical or psychiatric diagnosis has been made 
  •  The duration is at least 4 months
  • There are copies or reports of normal or negative investigations, as described below (see notes on medical screening), performed in the previous three months
  • The patient is willing to have a biopsychosocial and management assessment
  • The GP or referring doctor is responsible for providing reports for benefits/employment/insurance purposes as appropriate, which will not be provided by LMDT staff.

Notes on Medical Screening

Assessment

All patients will be assessed by a doctor experienced or trained in the diagnosis and management of CFS/ME. The assessment process is intended to determine whether the diagnosis of CFS/ME is appropriate and what further management is indicated

N.B. The medical assessment here is designed to be done by the LMDT doctor, but it may be possible in the future to give this responsibility to the GP or other referring doctor, with appropriate protocols and training.

Medical assessment will include :

History

Particular emphasis should be placed on:

History of present complaint

Any atypical features suggesting alternative diagnoses

Current activity level/pattern

Mood disorders (including both depressive and anxiety disorders)

Illness beliefs

Sleep pattern

Common medical and psychiatric exclusions

Examination

All patients will undergo a physical examination. The extent of this examination is at the discretion of the examining doctor, and will be influenced by the history.

All patients will undergo a mental state examination.

Investigations

Prior to Referral – all patients will have the following investigations performed: Full blood count, ESR or C-reactive protein, urea and electrolytes, liver function tests, calcium, albumin, creatine kinase, thyroid function (TSH and free T4), coeliac screen, random blood glucose, urinalysis for blood, sugar and protein.

(NB these tests are to be completed by the referrer, before a referral is accepted. Depending on the length of history and age of the patient, these tests should normally be done within three months of referral.)

The history may suggest the need for other tests (e.g. ANA, Lyme serology) but in the absence of a suggestive history no further tests are mandatory.

The multi-disciplinary team will be based at

Chronic Fatigue Syndrome Service

Sidney West Primary Care Centre

Leylands Road

Burgess Hill

West Sussex RH15 8HS

Tel: 01444 238870

Fax: 01444 238889

Referral Proforma  PDF

April 4, 2009

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Link to Barts

The CNCC for the Sussex Wide CFS/ME Service is Barts, London. The minutes of a West Sussex PCT Meeting 24/5/07 say:

… The Sussex MTD will be linked to Barts’ who will provide consultation and training support in its role as CNCC. The support provided by the CNCC will be mainly in terms of education and advice to the Local Multi Cisciplinary Team, in order to enable patients to receive their care locally. The Barts’ CNCC will also offer one-off consultation on more complex cases where this is appropriate…

Ed. the Barts CNCC has been condemend by ME patients in London (see www.rime.me.uk   – Clinics, London file).

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Selected Comments

Brighton 2008

… The rationale for the Sussex CFS Services seems confused – they are supposed to be specialised ME services, but fatigue is the only symptom listed in the referral criteria. The hallmark signs and symptoms of Myalgic Encephalomyelitis, which include Immune, Neuro and neuro cognitive and neuro endocrine in addition to PEM (Post Exertional Malaise), are missing from the Sussex CFS referral, assessment, and treatment criteria. So the Services don’t seem to be about ME.

The crux of the problem is that the Sussex referral criteria select patients with fatigue, and GPs see a lot of patients with fatigue from numerous different causes; most of the causes are not ME…

We should definitely now be using the Canadian Criteria to identify ICD G93.3 ME. To think of all the wasted years and wasted £millions since the CMO’s working group was convened in 1998, and we have been landed with CBT/GET, which has been discredited in so many ways, and has no scientific basis…

Why was the first Clinical Lead of the Sussex CFS Services a doctor described as a ‘specialist in psychological medicine’ and a ‘specialist in corporate CBT Training’, who describes ME as “medically unexplained”? Then the CFS Services Leads were doctors whose background is General Practice…

I wish the £11 million earmarked for ME had been spent on relevant biomedical research….

Brighton 2009

… The Sussex ME/CFS Society did not win my heart and mind in the years I was a member. I left after a few years in sheer frustration as the officials did not seem to be speaking about the disease I live with – yet they assured me that they were representing people with ME; they then went ahead and accepted CBT/GET ‘management’ for local NHS services. The actual ME patients didn’t have any say in the matter. It now turns out the Kent and Sussex ME/CFS Society is also involved in a pilot trial of the Lightning Process…. Lightning is an unproven NLP process that puts the onus on the patients by claiming that if the sick patients doesn’t recover its because they didn’t ”do the work”

The Chronic Fatigue Society, also called reMEmber, say they were closely involved in the planning stage of the Sussex CFS CBT/GET services. reMEmber seem to put their resources into running self-management courses which they say are open to all people suffering from ‘chronic fatigue’….

I would like representation by a patient charity that is compatible with the multisystem organic seriousness of Canadian Definition ME.

The referral criteria for the Sussex CFS Services relies too much on vague fatigue and does not mention the WHO ICD G93.3 classification of Myalgic Encephalomyelitis or the Canadian Definition of ME…. what do so called “illness beliefs” have to do with ME?…

Mid-Sussex 2009

I attended the Chronic Fatigue Unit when it was at the Princess Royal Hospital in Haywards Heath. High expectations fell to total disillusionment. The treatment didn’t help me; based on CBT, I failed to understand how it related to my illness – Myalgic Encephalomyelitis (ME). Subsequently, I knew someone with ME who described the CF Unit as a sham. Effective treatment for sufferers of this dreadful, neurological illness, in my opinion, will only come through properly funded biomedical research which is clearly lacking in the United Kingdom at this time.

Seaford Letter in Sussex Argus 2007

… Most people with ME in Sussex are.. not happy with the services on offer.. at the clinic Haywards Heath… They seem to offer only psychologically based interventions that have been shown to often cause people to become worse, not better. This is because the assumption made at clincs such as these is that ME is a psychological condition perpetuated by psychological factors. It is not.

It is time funds were instead given to.. physically based research studies….

AfME and the Sussex Group do not represent the great majority… with ME in this country.

Eastbourne Letter to APPG Chair 2005

… People I know with ME do not support the NHS ‘CFS/ME’ clinics which are currently being set up around the country and which offer psychiatric/psychological models of treatment. Someone with ME who attended the Maidstone CBT clinic claims that they were subjected to a lecture by a psychologist who talked about issues such as low self-esteem, negative thoughts, abnormal illness beliefs… They didn’t return. And I think these clinics will be generally boycotted by ME patients. People with other conditions, though, that would fit a loose CFS definition will probably attend and some of these might benefit > skewed results.

…. the number of people with ME who subscribe to the Sussex/Kent Group would be a small minority… in both counties. Those I know with ME want nothing to do with this Group.

Continuing on the issue of fairness, you (APPG Chair) have invited Prof. Pinching to address the APPG next Tuesday re. the NHS Clinics. He will most probably tell the attendees that everything is going swimmingly well. Have you also invited a party or parties who will put the other side of the coin eg RiME, the 25% Group… or someone from a local Group who opposes the new ‘CFS/ME’ unit in their area eg the neighbouring Winchester + Eastleigh Group…

Haywards Heath 2006

It is v important that money allocated to… ME be used to diagnose the physical causes of this v serious illness. It is entirely evident that the present forms based on psychological causes/treatment is just not working. The latest span of clinics are an off-shoot of the already well-established under the guidance of the ‘global expert on ME’ – Prof. SW…

.. there is not a shred of evidence there has been any benefit whatever to these individuals… patients are known to be coming out of these clinics with a different name to their serious symptoms…

My treatment as a nurse… instilled in us that patient needs come first. This clearly is not happening.. Not only are patients’ needs not being met, these ill people are being brandished – bullied – intimidated in the most pernicious way, by the profession trained at the expense of the public purse…

Wadhurst 2005

… my daughter has been chronically affected with ME and bed-ridden for fourteen years now. These new clinics have nothing to offer people like her. We would much prefer that public money was spent on biomedical research into ME …

2009

… having discussed the Clinics with ME friends in Brighton and Haywards Heath (who sent me the description of the Haywards Heath service), I certainly wouldn’t attend such clinics. What has this got to do with G93.3 ME? That the Sussex/Kent Group is supporting the ‘CFS/ME’ services begs questions as to who that Group actually represents? The same question, it would seem, could be asked of the Chronic Fatigue Society based in Sussex, also known as reMember? x,y was a member of the CMO’s Working Group and supported its 2002 Report. Their courses which last two-and-a-half hours, include ‘drawing up action plans, setting goals, problem solving and decision making…. ‘ (x,y 2003). If the courses are ‘tremendously successful’, one wonders who attends, exactly?

I have no faith in the APPG Inquiry Panel which will be assessing the clinics. If they go to providers such as the Sussex Clinics, I suspect the response will be skewed and misleading in that they are most probably attracting patients with a range of conditions, some of which might respond to psychiatric/psychological models of treatment. And if they go to the Sussex/Kent Group, it would appear they will get a favorable response…

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Leader of Sussex and Kent ME/CFS Society, InterAction Christmas 2008:

… we have noticed in our area.. that more people with ME/CFS these days are falling into the mild to moderate category and improving with the help of various approaches more quickly than previously.

As more professionals are recognising the illness sooner and administering symptom control along with sensible management advice, less people seem likely to slip into the chronic more severe illness.

In areas such as ours where there are specialist NHS Services, people are being diagnosed sooner and more GPs giving good early advice…

We are starting to see with ME/CFS… that it makes sense to intervene earlier rather than later to prevent chronicity and severity of illness.

Whilst aware… that the situation is far from perfect, things are improving and it’s great to see more of our members moving on and being able to take up active lives again.

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Ed. – Sussex could be a litmus test to see from whom exactly the Inquiry Panel takes evidence and to whom it listens. If it was to exclusivey or largely consider evidence from the NHS Service Providers in Sussex and the Sussex and Kent ME/CFS Society, then it would lay itself open to accusations of bias and stacking the deck.

There would appear to be similar concerns in other areas.

Paul Davis    rimexx@tiscali.co.uk    www.rime.me.uk

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