November 2008

APPG Inquiry on NHS service provision for people with ME

Invest in ME have read the Terms of Reference of the planned APPG Inquiry.

We have some concerns both in regard to the planned Inquiry and the Terms of Reference.

We wonder why this inquiry is being planned now just months before a Judicial Review of NICE is to take place.

We feel this will only divert people’s resources away from concentrating on the NICE review. It would be better to await the outcome of the judicial review into NICE.

Regarding the Background to the Terms of Reference we feel that patient concerns are that the existing CNCC clinics are offering nothing but a therapy-led service without in-depth clinical investigations being performed.

As such they are worthless for ME patients.

In the Aims of these Terms of Reference the term “encephalopathy” is used. We do not understand why this is part of this proposed inquiry. Myalgic encephalopathy does not exist as an illness.

The correct term is myalgic encephalomyelitis – as used in WHO ICD 10 G93.3. This needs to be corrected otherwise the inquiry has an incorrect basis.

The planned inquiry Terms of Reference do not ask how much is being spent on a biomedical approach into treating ME as opposed to therapy-led approach.

This is especially important as many feel that money is being wasted on the current model of care, especially by the current CNCC clinics which offer only therapy-led approaches to ME.

They do not ask how much is being spent on testing and ruling out other illnesses as opposed to management advice and CBT/GET?

These are clear omissions for any such inquiry.

There is no tie in with the Gibson report. Would it not be more important to investigate vested interests mentioned in the Gibson report which are stopping biomedical research taking place or why the substantial funding of biomedical research which the Gibson report recommended has not materialised?

It would be better simply to force the Secretary of State for Health to answer why he has stated that he will not consider the recommendations from the Gibson report and why he feels NICE supersedes the Gibson report when almost all ME patient organisations and charities are condemning the NICE guidelines.

Why doesn’t the APPG pick up the initiatives from the Gibson report, which are still valid, and force through these changes?

Asking SHA/PCTs questions regarding the information they provide or the treatments and interventions to be used for ME patients will likely only elicit responses based on the NICE guidelines anyway – and the NICE guidelines are unacceptable and under judicial review.

One of the most blindingly obvious omissions from the Terms of Reference is any question regarding which clinical guidelines are being used to diagnose people with ME in the first place.

This omission would nullify the whole inquiry if it is not considered or asked.

As misdiagnosis is one of the major problems with ME then this would have to be in any survey and all information provided would need to be categorised by which set/sets of guidelines are being used.

The aim to “provide diagnostic and therapeutic options to people with M.E” is meaningless unless the diagnostic criteria being used accompany the answers to this point.

Planning this inquiry now, just months before a Judicial Review of NICE is to take place, will only divert people’s attention, resources and time – more time lost for many with this illness and their families.

What ought to be examined is the compete lack of funding for biomedical research to provide a cure for this illness? Placing attention on coping with this illness, on the basis of the flawed and unacceptable NICE guidelines, provides no future for people with ME and their families who have no wish to merely accept the current status-quo.
Perhaps the APPG’s attention should be directed to forcing through change in government and MRC policy to allow biomedical research into ME to be performed which, in turn, would allow acceptable services to be developed.

---

Regarding the specific aims of the inquiry in the Terms of Reference we have the following comments attached to the inquiry aims –

“The inquiry will focus on collecting data from each Strategic Health Authority (SHA) and Primary Care Trust (PCT): “• about the funding they had available in 2007-2008 for caring for people with M.E., what they will have in the budget to provide services for people with M.E. in 2008-2009 and what funding they would need to implement the NICE guideline”

IiME: We do not believe SHA/PCTs should implement the NICE guidelines. With NICE about to be brought before a judicial review it would be ludicrous to attempt to implement the NICE guidelines in the current context. Most independent ME charities and patient organizations have rejected the NICE guidelines. We do not feel SHAs/PCTs need to implement NICE guidelines if the ME patient community have rejected them.
The Terms of Reference state that it (the inquiry) will consider a number of points relating to how health professionals treat this illness. It should specifically state that the analysis of these services and the points mentioned in the aims section of the ToR is from patients.

how well health professionals in primary care, secondary care and in specialist centres/teams provide information about the range of interventions and symptom management strategies available, including benefits, risks and likely side effects”

IiME: What would be the value of this if the healthcare staff are themselves ignorant or only providing information based on flawed perceptions of this illness as a behavioural illness?

A question needs to be put to healthcare staff as to where their information comes from when advising patients on treatments and symptom management.

“the extent to which health professionals in primary care, secondary care and in specialist centres/teams receive appropriate professional training in the range of interventions and symptom management strategies available, including benefits, risks and likely side effects”

IiME: This point is placed within the section of analysis implied to be by patients. Yet only healthcare staff can comment on their training.
Who defines “appropriate professional training”? If this is including that which is offered, for example, from Barts CFS/ME Clinic, then this is not considered satisfactory as it revolves around treating ME as a behavioural illness.

This needs to be clarified.

“• whether health professionals in primary care, secondary care and in specialist centres/teams provide adequate information on the possible causes, nature and course of M.E.”

IiME: Who decides what is ‘adequate information’. We have commented earlier about the generally biased views of healthcare staff toward ME so how is this to be determined?? Where do the healthcare staff receive their information to pass on to patients?

Invest in ME
November 2008
Charity Nr 1114035