Update: 12 July:
The Inquiry questionnaire for Service Providers is now available from the APPG on ME website here:
QUESTIONNAIRE on Service Provision
Below is the questionnaire on service provision sent to PCTs in England and Wales
or open PDF here on ME agenda: PCT ME Survey Final
1] APPG on ME meeting: 8 July 2009
2] APPG on ME Inquiry into NHS services for people with ME: 1st Oral Evidence session: 9 July 2009
1] A meeting of the All Party Parliamentary Group on ME (APPG on ME) took place on Wednesday, 8 July 2009 in House of Commons Committee Room 13.
The meeting, which also served as the Group’s AGM, was attended by MPs Dr Des Turner, Andrew Stunell, Peter Luff and Edward Davey, representatives of national patient organisations, including Action for M.E., The ME Association, The Young ME Sufferers Trust, BRAME, RiME, ReMEmber (The Chronic Fatigue Society) and several members of the ME community.
AGM: Re-elected Office Holders:
Dr Des Turner was re-elected Chair.
Vice Chairs Andrew Stunell and Tony Wright and Treasurer, David Amess, remain Office Holders.
Dr Ian Gibson who had served as Secretary to the APPG on ME committee stood down following his resignation from Parliament in June.
The Countess of Mar* was elected Secretary to the APPG on ME.
Dr Turner warned that a new Chair would be needed as he does not intend to stand again in the next General Election.
Action for M.E. and the ME Association will continue to provide administrative support to the APPG by providing the Secretariat.
Summaries of the meeting, a transcript and minutes will be posted here as they become available. The next meeting of the APPG on ME will take place in the Autumn.
The APPG on ME maintains a website at: http://www.appgme.org.uk
*In October, last year, the Countess of Mar convened and chairs a caucus group – Forward ME. The members of the Forward ME caucus group are: Action for M.E., The ME Association, AYME, The Young ME Sufferers Trust, BRAME, Invest in ME, ME Research UK and ReMEmber (The Chronic Fatigue Society). The 25% ME Group was a member of Forward ME but has since withdrawn from the group.
A website for Forward ME is maintained at: http://www.forward-me.org.uk where agendas and minutes of meetings can be accessed.
2] APPG on ME Inquiry into NHS services for people with ME: 1st Oral Evidence session: Thursday, 9 July 2009
It is unconfirmed which national patient organisations have submitted Written Evidence and whether and when these submissions will be released.
Following the first Oral Evidence session, the ME Association published its 3000 word submission.
The full submission can be read on the ME Association’s website. As this is a long document I am publishing only the Executive Summary, below:
For the full Written Submission go to: http://www.meassociation.org.uk/content/view/911/161
ME Association submission to the APPG Inquiry into NHS Services for people with ME
The All Party Parliamentary Group on ME Inquiry into NHS services for people with ME/CFS is now calling witnesses to give evidence before it. Dr Charles Shepherd, our medical adviser, answered questions this afternoon (Thursday July 9). Our written submission appears below.
1 ME/CFS covers a wide spectrum of clinical presentations and severity. This has to be appreciated when planning NHS service development and the training of those involved – doctors, nurses, occupational therapists, physiotherapists – in the clinical assessment and care of patients.
2 Everyone with ME should be able to receive an early and accurate diagnosis, normally through the primary care system, along with access to a local hospital based specialist service for further advice on either diagnosis or management, where necessary.
3 The severely affected group require home based management and designated in-patient beds for assessment and management.
4 The MEA submission describes serious deficiencies and omissions in all of the above key aspects of assessment and care.
5 The 2002 Chief Medical Officer’s report into ME/CFS made a number of specific and helpful recommendations regarding service development. The subsequent injection of ring-fenced funding from the Department of Health resulted in a number of new services opening. However, some parts of England still have no local specialist service to whom patients can be easily referred and some of the existing services are experiencing serious problems with funding.
6 The MEA submission highlights positive aspects of the CMO report that have still not been acted on by those responsible for funding and providing NHS services.
7 The 2007 NICE guideline on ME/CFS forms the new basis for clinical assessment, diagnosis and management of ME/CFS patients. Almost all of the charities representing people with ME/CFS believe that the NICE guideline has made the management situation worse because of their ‘one size fits all’ approach, which involves only recommending cognitive behaviour therapy and graded exercise therapy. This approach fails to take into account the fact that large numbers of people with ME/CFS report that these two treatments are either ineffective or cause a worsening of their condition – but this is all that is being offered in the way of management to significant numbers of people..
8 The MEA submission explains why the recommendations on management in the NICE guideline are a major stumbling block when it comes to providing services for people who are not going to be helped by CBT or GET.
Read on here: http://www.meassociation.org.uk/content/view/911/161
Action for M.E. has published a report on the 1st Oral Evidence session
Report of Day 1 of the APPG inquiry into NHS service provision for people with M.E.
Based on notes by Sir Peter Spencer, CEO, Action for M.E.
At 2pm 9 July, the All Party Parliamentary Group inquiry into NHS service provision for people with M.E. met in Committee Room 8 in the Houses of Parliament for its first session of taking oral evidence from witnesses.
Des Turner MP took the chair and was joined by the Countess of Mar, Andrew Stunell MP and Tony Wright MP. The other member of the inquiry team, Peter Luff MP, was unable to attend on this occasion. It is understood that a large amount of written evidence has already been received from patients, patient groups and from various parts of the NHS involved in service provision.
The oral evidence was recorded and the intention is that it will be typed up and made publicly available probably via the APPG website (www.appgme.org.uk ).
The proceedings began quite rightly by taking oral evidence from patients. Three people had been selected from those who had sent in written evidence. They were Cathy Fry from Sussex, Jo [Ed: Joy] Birdsey from Kent and Sally Phillippe from Middlesbrough. The inquiry team invited each person to expand upon their personal experience of the illness by asking questions about the availability of services for their M.E. and the nature of those services.
All three had had significant problems with accessing appropriate care.
In Sally’s case she has still had no help apart from a diagnosis 12 years ago because there are virtually no M.E. services in Teeside – an area with a population of 670,000. Her local Primary Care Trust (PCT) had refused to fund a referral to services outside of their area. Sally explained that she felt very angry not only about her own experience but also on behalf of the large numbers of other people who had also not been given the help they need from the NHS.
Jo had found her local PCT in Kent to be extremely difficult, putting “M.E. at the bottom of the list” and being unwilling to enter into discussion about priorities for treating M.E. patients. She illustrated her own case with a graphic account of a particularly badly delivered set of Cognitive Behavioural Therapy (CBT) sessions.
Cathy encountered great difficulties with getting the help she needed from the NHS in Sussex over many years. She had finally decided to try the Lightning Process (LP) when her GP told her that although he was very sceptical, he had been astonished by the result experienced by one of his patients. Despite her own misgivings, Cathy tried LP and to her own astonishment it has produced such an improvement that she now describes herself as recovered. It was recognised by the inquiry team that LP does not work for all patients and that many are disappointed. It is also not available from the NHS and has to be paid for by the patient – £560 in Cathy’s case.
A common theme that emerged was the difficulty of finding GPs who are informed about M.E. and are supportive. Tony Wight asked the witnesses if it would be helpful for GP practices to have M.E. trained nurses to help GPs with M.E. patients. The response was a cautious yes but only if they are properly trained and are able to undertake domiciliary visits. It was important for patients to have access to the doctor as well as to the nurse.
The second part of the session took evidence from six patient representative groups namely:
- Peter Spencer – Action for M.E.
- Charles Shepherd – ME Association
- Mary-Jane Willows – AYME
- Doris Jones – 25% Group
- Christine Harrison – BRAME
- Jill Piggott – Worcester M.E. Support Group [Ed: Jill Pigott - Worcestershire M.E. Support Group]
Only 45 minutes were left for this final part of the session which had been interrupted several times when MPs and the Countess had to leave for votes in both chambers of the House. Each witness made an opening statement highlighting aspects that they wished to be considered by the inquiry team.
In its written evidence, Action for M.E. has already submitted the report M.E. 2008: What progress? Peter Spencer said that he would wish to cover during the evidence session the key findings and the main recommendations, including those relating to lack of service provision for children and the severely affected.
Our survey showed some improvement in NHS services since 2001 but the rate of improvement has been far too slow.
Peter also challenged the undue weight given by the NHS to Randomised Controlled Trials (RCTs) quoting from the 2005 National Service Framework for Long Term Conditions that “RCTs and other quantitative methods are not necessarily best suited to research questions involving long term outcome, varied populations with complex needs and assessment of impact on quality of life rather than a cure.”
He also submitted a copy of the views of the Chair of NICE Sir Michael Rawlins, in a speech given in October 2008 which expresses serious reservations about RCTs being put on an undeserved pedestal. He said, “Their appearance at the top of hierarchies of evidence is inappropriate; and hierarchies themselves are illusory tools for assessing evidence.” Sir Michael had also questioned the “generalisabilty” of RCTs whereby limited data from trials is extrapolated to a wide population. Peter stated that this was precisely what had happened with the RCTs which had involved ambulant M.E. patients and that these trials had been given disproportionate weight in drawing up treatments available from the NHS. Other points raised by Peter included:
. how the Department of Health and Ministers remain accountable for the overall delivery of M.E. services when decisions on service delivery are delegated to so many individual Care Commissioners in Primary Care Trusts
. health economics are relevant. The annual cost to the UK of the burden of M.E. was estimated in a study done in conjunction with Sheffield Hallam University in 2002/03 as being £3.4 billion at 2002 economic conditions.
Updating that number for inflation gives estimates of £4.14-£6.4 billion per annum at 2008 prices. This is an area which merits further work to bring it up to date.
Peter also expressed strong support for some valuable points raised by his fellow witnesses, notably:
. the need to investigate the problems that patients still encounter with GPs who are sceptical or ill informed about M.E. – or both.
He illustrated this by reading out anonymous excerpts from patient narratives acquired in Action for M.E.’s 2008 survey:
Charles Shepherd has recommended that the Royal College of GPs gives evidence at the next session. Action for M.E. agrees
. the value of a National Services Framework specifically for M.E. because this would be enforceable and set standards of care which all PCTs throughout England would have to provide
. the need to engage with the Department of Schools and Education to raise awareness and understanding of the particular problems faced by children with M.E. and their families.
It would be fair to say that all of the patient representative organisations were frustrated by the limited time available for their oral evidence. Nonetheless, a lot of powerful points were made and Action for M.E. and the other organisations have all made substantial written contributions.
On Thursday 16 July the inquiry team meets again this time to hear evidence from the Department of Health as provider of NHS services.
It is hoped that witnesses will include a Government Minister as well as senior figures from the NHS. The session is scheduled from 2-4 pm in Committee Room 18 in the House of Commons.
The general public are able to attend. If you would like to see this piece of history being made, you need to plan to arrive by 1.30 pm to allow time for the security checks and volume of queuing which is unpredictable.
Wheel chair access is available and the House of Commons staff are extremely helpful. Do check the APPG website close to the date to confirm that the location has not been changed. The link is: www.appgme.org.uk
ME agenda: Notes:
 The APPG on ME Inquiry into NHS services for people with ME is an unofficial inquiry being undertaken by an ad hoc committee of parliamentarians. The inquiry has not been commissioned and is not being undertaken by a Parliamentary committee, Select Committee or Standing Committee. The Inquiry and any report that results out of it does not have the authority of either of the Houses of Parliament or any government department.
“In parliamentary terms all-party groups have no official status, and are viewed as informal. Their reports therefore have only the authority of those who produce them.” Philippa Wainwright, Office of the Parliamentary Commissioner for Standards
 It is reported that the CMO, Sir Liam Donaldson, has been invited to attend the second evidence session on 16 July. It remains unconfirmed whether Sir Liam has accepted this invitation.
 Dr Des Turner, MP, Chair of the APPG on ME who also Chairs the APPG on ME Inquiry into NHS services for people with ME is a Patron to the Sussex & Kent ME/CFS Society. It is not known whether Dr Turner will remain Patron to the Sussex & Kent ME/CFS Society following his intention to stand down at the next general election.
 Connie Nelson has reported via Co-Cure (11 July 2008) that testimony on LP was included in the APPG on ME NHS services Inquiry and queries whether this might be related to the following:
Dr Michael Broughton, who is in charge of the Mid Sussex-based M.E. services, has joined the Sussex ME/CFS Society as its medical adviser. (Brighton Argus, p 15, 27/06/09)
Phil Parker at Swallows
Sunday, March 1, 2009 at 8:26PM
Phil Parker visited Swallows Retreat to meet with Dr. Michael Broughton, Consultant Specialist ME/CFS Sussex, and Colin Barton of the Sussex and Kent ME Society.
They joined Linda for a Summer barbecue in Swallows garden, looking at its best in July, and thirty graduates of the Lightning Process for M.E. at Swallows, who enjoyed the opportunity to thank Phil Parker, Developer of the Lightning Process for the difference he has made in their lives.
Some took the opportunity to swim in the pool and the party went on after Dr. Broughton and Phil Parker had to return to their respective clinics.
Dr. Mike Broughton and Phil Parker are now in consultation about further clinical trials beyond the year long one currently being undertaken with Linda’s Lightning Process participants at Swallows.
Ed: Please note that ME agenda is unable to enter into any correspondence around the Lightning Process with LP practitioners, members of the public, media or others.