Press statement issued today by Dr Des Turner MP, chairman of the All Party Parliamentary Group on ME.
Dr Des Turner MP, Chair of the All-Party Parliamentary Group (APPG) on M.E., launched an APPG inquiry into NHS service provision for people with M.E., at a meeting in Committee Room 20, House of Commons, 1.30-3pm, Wednesday 1 April 2009
The inquiry will evaluate the extent to which the NHS is providing care for people with M.E. (Myalgic Encephalomyelitis) in England, particularly in primary and secondary care, and in specialist centres/teams.
The inquiry committee will consist of Des Turner, Ian Gibson, Tony Wright, Andrew Stunell, Peter Luff and the Countess of Mar.
Announcing the terms of reference, Dr Turner said:
“The committee will consider written evidence from patients and professionals before inviting individuals and organisations to make oral presentations.
“Written evidence will include the findings of questionnaires, for patients and NHS service providers, which are currently being drawn up.
“People with M.E., carers and professionals are invited to submit suggestions for specific questions which should be asked in these surveys. Our deadline for receiving people’s ideas is 5 May 2009.
“The cut-off point for the submission of written evidence will be 30 June 2009. Oral hearings are likely to take place in the middle of July.”
A website is being set up for the inquiry, which will include the timetable of activities.
Until the website is activated, the contact address for the inquiry is: APPG inquiry M.E. services, c/o Dr Des Turner MP, 179 Preston Road , Brighton BN1 6AG .
Notes to Editors
1. ME (Myalgic Encephalomyelitis) is a chronic, fluctuating illness which affects up to 250,000 people in the UK . Common symptoms include severe exhaustion, muscle pain and problems with memory and concentration. ME can affect men, women and children of all ages, from all social and ethnic groups. ME may be diagnosed as Chronic Fatigue Syndrome (CFS) or Post Viral Fatigue Syndrome (PVFS).
2. Background and terms of reference for the inquiry are as follows:
The 2002 CMO report recommendations, which were accepted by the government, raised expectations in some quarters of major improvements in the provision of primary and secondary healthcare services for patients with M.E. (Myalgic Encephalomyelitis).
M.E. is classified as a neurological illness under the World Health Organisation classification (ICD G93.3). However the NHS largely uses the term Chronic Fatigue Syndrome instead of M.E. or else adopts the hybrid CFS/M/E. in diagnosing and treating patients. Terminology is a contentious matter. It has some bearing on this inquiry because to use only the precise WHO classification of M.E. above will impede access to information from the NHS that is crucial to the success of this inquiry.
A central ‘ring-fenced’ budget of £8.5 million was announced in 2003 with the specific aim of developing new secondary referral services for people with ME in England . The Department of Health funding was released in two phases in 2004/05 and 2005/06. This resulted in the establishment of 13 Clinical Network Co-ordinating Centres and some 50 Local Multidisciplinary Teams.
Subsequent changes in NHS organisation and budget setting arrangements have since made it far more difficult to establish the level of investment into the care of these patients. It has also become apparent that some of these newly established secondary services are having to cope with significant reductions in funding. As a result, some have either closed or are under threat of closure – an issue that was discussed by the APPG at its meeting on 12 July 2007.
Patient group surveys continue to identify high levels of patient concern about the services which are being provided and further concerns about the way in which the recommendations contained in the 2007 guideline on ME/CFS from NICE could result in an inflexible approach to management.
The inquiry will evaluate the extent to which the NHS is providing care for people with M.E. (Myalgic Encephalomyelitis) in England , particularly in primary and secondary care, and in specialist centres/teams.
Specific areas of enquiry
The inquiry will focus on collecting data from each Strategic Health Authority (SHA) and Primary Care Trust (PCT). It will also collect data from specialist treatment centres, directors of Public Health, patients and patient groups. Questions will inquire about:
- Their service framework for caring for people with M.E., including children with M.E. and those severely affected by M.E
- 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.
- Their estimate of the number of people with M.E. living in their area of responsibility; of these how many are severely affected and how many are children; what is their estimate of the annual funding needed to provide adequate health care services for these patients.
- Their plans for the establishment of new clinical services where no such service currently exists.
- What currently happens to people with ME where a secondary referral is required but no local service currently exists.
- The ways in which patient outcomes are measured and seeing how this compares with how patients measure outcomes.
- The extent to which the National Service Framework for Long Term Neurological Conditions addresses the generic issues affecting the management of the illness, sets standards for treatment and care and supports health and social care professionals to deliver high quality services.
- What diagnostic criteria are being used.
- How well the reality and impact of the condition and its symptoms are acknowledged in primary and secondary care and in specialist centres/teams.
- 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
- 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.
- 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.
- The extent to which health professionals in primary care, secondary care and in specialist centres/teams take account of the:
It will also consider:
• age of the person with M.E., particularly for children younger than 12 years
• the severity of the patient’s M.E.
• patients’ preferences and experiences and the outcome of previous treatments
• the stage of the illness
- Provide diagnostic and therapeutic options to people with M.E. in ways that are suitable for the individual, including providing domiciliary services (including specialist assessment), or using methods such as telephone or e-mail.
- The extent to which health professionals in primary care, secondary care and in specialist centres/teams share decision-making with the person with M.E., establish a supportive and collaborative relationship with that patient and their carer(s) and recognise their right to refuse or withdraw from any component of their care plan without affecting other aspects of their care or future choices about care.
Organisations and individuals are invited to submit written evidence. The strong preference is for written evidence to be in Word format—not PDF format—and sent by e-mail to firstname.lastname@example.org.
However it recognised that many people with M.E. will not have the use of computers or internet facilities and so typewritten scripts and legible hand written scripts will also be accepted.
The body of the e-mail or covering letter must include a contact name, telephone number and postal address. The e-mail/covering letter should also make clear if the submission is from an individual or on behalf of an organisation. The deadline is 9 June 2009.
Submissions must address the terms of reference. They should be in the format of a self-contained memorandum and should be no more than 3,000 words. Paragraphs should be numbered for ease of reference, and the document must include an executive summary. Submissions should be original work, not previously published or circulated elsewhere, though previously published work can be referred to in a submission and submitted as supplementary material. Once submitted, your submission becomes the property of the APPG. The APPG will expect to publish the written evidence it receives
Evidence sessions are likely to commence 14 July 2009 and a later notice will give details of these.