ME agenda notes:
1] Please note that the following summary of the January APPG meeting has been published and circulated as a “personal summary” by Dr Charles Shepherd, although it has been signed in Dr Shepherd’s capacity as Hon Medical Adviser, The ME Association. The official Minutes of the meeting which took place on 22 January will be published later.
2] At the end of this “personal summary” Dr Shepherd has included a section headed “Personal comment”. The text of this section has been omitted from the copy below at the discretion of the publisher, ME agenda. The owner of this site is not prepared to give a platform to Dr Shepherd for publishing comment of an inflammatory nature. The summary of this APPG meeting is signed by Dr Shepherd in his capacity as Hon Medical Adviser, The ME Association and is published as such on the ME Association’s website. If Dr Shepherd wishes to publish personal opinion and comment of any nature it is considered that he should do so separately and on a purely personal basis and not as part of a summary published in the name of The ME Association. To do otherwise is considered an abuse of Dr Shepherd’s position as Hon Medical Adviser to the ME Association and member of the Board of Trustees.
3] The organisation MERUK were represented at the meeting by Mrs Sue Waddle.
by Dr Charles Shepherd
Hon Medical Adviser, The ME Association
25 January 2008
This is a short personal summary/sketch of key points to emerge from the All Party Parliamentary Group (APPG) meeting held on Tuesday 22 January 2008
A more detailed account – in the form of the official minutes being prepared by The ME Association – will follow later.
Committee Room 17, House of Commons
Ian Gibson MP
Tony Wright MP
Andrew Stunell MP
Kerry McCarthy MP
Countess of Mar
There were numerous apologies from MPs as other important meetings were taking place, including a debate in the House of Commons chamber on the Energy Bill.
AfME: Sir Peter Spencer and Heather Walker
MEA: Tony Britton and Dr Charles Shepherd
National ME charity and ME organisation representatives:
25% Group: Doris Jones
AYME: Mary Jane Willows
BRAME: Christine Harrison
RIME: Paul Davis
Tymes Trust: Jane Colby
There were also around 20 others present: parliamentary assistants; local group representatives; people with ME and carers. A full list of those attending will appear in the minutes.
In the absence of Des Turner, who was taking part in the Energy Bill debate, the meeting was chaired by Ian Gibson with his usual good humour and tolerance.
MINUTES OF PREVIOUS MEETING
The meeting opened with a prolonged and at times quite heated discussion relating to disagreements with the previous APPG minutes that had been raised in letters from Paul Davies and Angela Kennedy – both of whom spoke.
MATTERS ARISING AND ROUTINE BUSINESS
Having been notified that Ann Keen, Parliamentary Under Secretary at the Department of Health, would be late the secretariat provided a brief update on current ‘hot topics’. A background briefing paper on these ‘hot topics’, prepared by the MEA, was circulated to those present.
Adjournment debate: CS reported that John Bercow MP had not been successful in achieving a slot through the December ballot. John Bercow is going to keep trying as the opportunity arises.
DWP medical guidance on ME/CFS: CS reported that without any DWP statistics to go by following the introduction of this new guidance in July 2007 all we have are continuing anecdotal reports, and that more information on benefit problems is really required before asking a DWP minister to return to the APPG. As an alternative, it was decided to consider the possibility of arranging a meeting with the DWP to discuss our continuing concerns over benefit problems.
NHS Plus leaflets on Occupational Health: CS reported that Dr Ira Madan had written back to the MEA on January 11 to say that she was considering the points made in the joint charity response submitted by the MEA and that revised versions of the three leaflets were now being prepared. PS was hopeful that the amendments would meet the concerns and objections that have been expressed.
NHS Collaborative Conference: PS and MJW gave a positive report on this conference about which concerns had been expressed at the last APPG meeting.
PREPARATION FOR PRESENTATION BY THE MINISTER
With no sign of the minister, Ian Gibson felt that we should move on and agree a small number of key points that should be raised in the limited amount of time we were likely to have with the minister and what we should ask for at the end in order to keep the momentum going – otherwise we were going to miss a marvellous opportunity to contribute to government policy-making.
It was decided to concentrate on the issue of NHS services – in particular problems with existing services (ie financial cutbacks and closures following the end of the ring fenced funding from the DoH) and new services that are being introduced or proposed following the NICE guideline (ie early indications that PCTs may be opting for services that are not physician-led, offer no diagnostic service, and concentrate on CBT and GET). And? as Lord Darzi would be completing his work on the long term neurological conditions chapter of his NHS review shortly, we should be seeking an urgent meeting with him to discuss ME services.
Ian Gibson suggested that it may be useful to prepare another Early Day Motion (EDM) – this time concentrating on services.
Ian Gibson also suggested that the time may have come for the government to appoint an ‘ME Tsar’ who can deal with all the various issues relating to ME – in the same way that high profile diseases such as cancer and heart disease now have their own government health tsars.
MINISTERIAL PRESENTATION FROM ANN KEEN MP
[Ann Keen entered parliament in May 1997 as member for Brentford and Isleworth]
Ann Keen and her entourage arrived shortly after 5pm. Accompanying her was Dr Chris Clough – a consultant neurologist from King’s College Hospital, London who is also a member of the External Reference Group for the National Service Framework in long term neurological conditions.
Ann Keen started off by explaining that she had spent 25 years in nursing – much of this in the community working with people who have long term disabling conditions.
She clearly understood and sympathised with many of the well known problems facing people with ME:
a Unsympathetic doctors
b Lack of medical education on ME
c The need for early diagnosis
d Good quality management that covers all aspects of the illness
e Research, or lack of it, including the need for better epidemiological data so that health providers know the full extent and severity of the problem
I doubt if anyone would disagree with the aspirations that Ann Keen expressed when it comes to improving the situation for people with ME.
Whether the minister can actually deliver any of these changes remains to be seen. And while accepting that local decisions about the funding of service provision could create problems there was no indication that the DoH was going to make any further special case for ME or be more proactive in telling PCTs what to do.
On the question of classification, Ann Keen was quite happy to use the term ‘neurological’ as the best way of describing ME – which she did on several occasions . And there was no objection to the term neurological from the neurologist who was present. Could this actually signal the end of the road for the dreadful term ‘biopsychosocial illness, so favoured by the psychiatrists and NICE?
Key points relating to existing services and new services were put by MJW (as PS had to leave and catch a train to Edinburgh), CS and Christine Harrison (BRAME).
Ann Keen said she was happy to stay on and answer a few questions – which she did. Question time included some comments on the proposed new service in Kirklees, West Yorkshire – where the impetus has come from a rise in the number of neurological referrals.
The meeting concluded by thanking Ann Keen for coming and offering to try and set up a meeting with Lord Darzi, Parliamentary Under Secretary of State at the DoH, to discuss the whole issue of NHS service provision for people with ME. More information on this proposed meeting will appear on the MEA website as it becomes available.
CLOSE OF MEETING
The meeting closed shortly before 6pm.
The topic and date of the next meeting has still to be arranged.
Personal comment: [Ed: The text of this section has been omitted at the discretion of the publisher, ME agenda. Please refer to note at top of posting.]
Dr Charles Shepherd
Hon Medical Adviser, The ME Association
25 January 2008