Presentation to Health Minister

Rt. Hon. Michael McGimpsey at Parliament Buildings Stormont
Monday September 28th 2009

Please also see a brief outline of this meeting

For easier reading, the points made are numbered and in bold print, and underneath, in brackets are the examples and views to validate those points.

1. There are many more ME patients in Northern Ireland than other patients with chronic illnesses, and they are equally disabled. But ME patients have nothing like the same range of NHS support facilities.

The annual prevalence of ME is 4000 per million (see NICE Guideline CG53, p.71). There are approximately 6,700 ME patients in Northern Ireland. “The physical symptoms [of ME] can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions” (NICE Guideline CG53, p.68).

2. There is much the NHS can do, even though there is no cure for ME. Prompt diagnosis, information, validation, and expert advice on management can greatly improve the lives of patients.

It is vital for patients that teachers, employers, insurers, and The Benefits Agency have access to authoritative reports from NHS specialists.

3. The ME clinic at Belfast City Hospital is under-resourced and understaffed. The sole specialist facility in NI caters only for adult ambulant patients in the Belfast area. Most Health Boards in Northern Ireland have no specialist ME provision whatever.

The consultant who heads the BCH clinic works unpaid. The sole specialist member of staff is one single Occupational Therapist, working part-time. Demand far outstrips supply, and there is always a waiting list. This clinic does not cater for adolescents or children, nor the housebound, nor for patients in the acute phase, nor for those in need of diagnosis. There is no long-term continuity of treatment there, for what is always a long-term condition. Patients are given only a short one-off course in lifestyle management, and then discharged.  ME patients find it exhausting to travel. To accommodate this, there is an urgent need for satellite ME clinics at Antrim, Altnagelvin, Erne, Craigavon and Daisy Hill hospitals.

• Note: Since this submission was originally sent to the Health Minister, further developments has now taken place. An update will be posted on the website very soon.

4. Misleading Department of Health information. Glowing DOH reports to MLAs about NHS provision in Northern Ireland are highly misleading. Support for ME patients are in fact very patchy.

DOH press statement to “UTV LIFE” on 9th April 2008 was typically vague, contradictory and inaccurate: The Department of Health says:

• No specific funding is allocated for ME sufferers
• Patients have access to a range of services based on clinical assessment of their need.
• A range of treatment and support options are available, and those delivered will depend on the patient’s specific symptoms and their severity”

What specific “treatment and support options are available” and how can they be provided if the DOH - as it admits - provides no funding?)

5. Need for central DOH initiative. There will be no progress without a central clinical initiative orchestrated by the NI DOH, with a ring-fenced budget.  Patient involvement will be vital to its success.

(In England in 2006 an £8.3 million initiative of this kind was required, to kick-start NHS provision. In February 2008 the NI CMO advised all Health Boards of their responsibility to provide specialised services for ME patients. 

“The Department expects the HSC sector to take account of this guidance in its planning and delivery of services to people suffering from CFS/ME. (Circular HSC [SQSD] (NICE) 03/08 CG53). To date, none of the Boards have shown any interest.  In England, much of the £8.3 million special funding for ME was appropriated by the psychiatric lobby, to advance their own parochial agenda. It would be a major strategic error if the same outcome emerged in Northern Ireland).

6. Dangerous & Ineffective NHS Treatments. Current NHS recommended treatments for ME are ineffective, and often have serious side-effects. CBT and GET are unpopular with patients, and face client resistance.  GET has complication rates ranging from 37% - 50%, and should never have been approved for general use in the NHS. The use of psychotherapy as a first-line treatment perpetuates the myth that ME is a psychiatric illness.

NICE admits that NHS “treatments” are not directed at the core disease, and will not cure ME. Instead, patients are offered psychotherapy, and taught “how to cope”.

The GDG was clear that CBT was not about unhelpful advice or dictation of illness beliefs, but about changes in lifestyle and learning to achieve improvement within the patient’s abilities. The GDG did not regard CBT or other behavioural therapies as curative or directed at the underlying disease process, which remains unknown. Rather, such intervention can help some Patients cope with the condition and experience improved functioning, and consequently, an improved quality of life’. (NICE Guideline CG53, p252).

Many patients see this approach as proof that the NHS has lost its way on ME. Seriously disabled patients do not look to doctors for advice on “how to cope”. More reasonably, they look to the medical profession to provide a cure. Reassurances by NICE on the safety of GET is ill-founded. In August 2007 NICE stated that: 'the view of the GDG was that all interventions have the potential to cause harm as well as provide benefit. GET is no different, but the overall research evidence is that the benefits outweigh any harmful effects’. (NICE Guideline CG53, p253).

However, in 2008 the definitive Cochrane Collaboration research view of CBT/GET for ME exploded NICE assumptions on the risk/benefit ratio. The Cochrane authors discovered there had been no research to collect data on adverse events.

'No studies examined side effects’. ‘Dropout due to adverse effects - No studies contributed to this outcome at post treatment or follow-up’. ‘Outcomes which are of high relevance to the individual with CFS, including adverse effects, were under-evaluated in the included studies’. (Price JR, Mitchell E, Tidy E, Hunot V. Cognitive behaviour therapy for chronic fatigue syndrome in adults. Cochrane database of Systematic Reviews 2008).

Client surveys consistently demonstrate that patients prefer “Rest” and “Pacing” as management strategies, and that GET (Graded Exercise Therapy) often makes them worse.  In December 2006, almost all of the UK patient charities rejected the principal treatments recommended by NICE in these terms: ‘The limited research available does not support NICE’s “one size fits all” approach, where cognitive behavioural therapy (CBT) and graded exercise therapy (GET) are seen as treatments of first choice for everyone with ME. A large majority of patients have reported that GET can damage not improve health. NICE have ignored this”.  (Press Statement from Action for ME; The ME Association; The Young ME Sufferers Trust; The 25% Group; CHROME; BRAME; & The National ME Centre: 19th December 2006).

Survey figures from the UK patient charity Action For ME are:

• 2001: 50% made worse by GET.
• 2003: 50% stated GET harmed them.
• 2008: 34% made worse by GET.

7. Psychiatric management is unacceptable. In view of recent findings by NICE, NI MEA consider it insupportable that the Belfast ME clinic should be sited within psychiatric medicine.

In August 2007 the authors of the NICE Guideline refused to endorse any of the alleged psychiatric causes of ME: ‘Specifically, the GDG does not state that ME/CFS is a behavioural disorder, a psychiatric illness, a somatic/functional disorder, an illness belief, depression or anxiety disorder’. (NICE CFS/ME consultation draft, Stakeholder Comments on chapter 5, Page 45. 5.5 A Conceptual Framework). The location of the Belfast ME clinic within a psychiatric unit at Windsor House, and supervision by a consultant psychiatrist, give rise to regular complaints. Many patients who attend this clinic - and many who refuse to - are alienated by the mental health context.

8. NHS provision in Northern Ireland is lagging badly behind the UK.

A network of ME clinics covering most areas of England were established by 2006. Authoritative clinical guidance for GPs was launched at the Scottish Parliament on 14th May 2009 [the “Scottish Good Practice Statement on ME/CFS”]. Despite repeated lobbying by the NI MEA, there has been no adequate central Board response in Northern Ireland to the needs of ME patients.

9. Private Sector Provision. NHS provision is so lacking in Northern Ireland that many NI MEA patients are turning to private medicine. A London consultant physician, specialising in ME, now visits Belfast once a month; he always has a waiting list.

Many patients who visit this consultant comment that [i] they are relieved to have a firm diagnosis ending uncertainty; [ii] that he is obviously an expert, and can give them and their GPs valuable clinical guidance; and [iii] that this is the first doctor they have met who has not treated them with hostility and scepticism. Most ME patients are financially impoverished and on benefit; but a good number use their own money to access the kind of service the NHS should provide in Northern Ireland, but doesn’t.

10. Department Of Health Policy Paralysis. Difficulties mentioned in points 6 and 7 are no excuse for continuing policy paralysis at Stormont. There is still much that can be done in the absence of clinical agreement as mentioned in point 2.

Further updates regarding the outcome of this meeting with the Minister of Health will be added to the NI MEA Website when a Report has been finalised.