APPG summary, May 17

May 21, 2007


Des Turner MP
Sarah Vero (representing Ian Gibson MP)
Koyes Ahmed (Researcher to Dr Des Turner)
AfME: Sir Peter Spencer, Trish Taylor, Heather Walker
BRAME:  Christine Harrison
MEA:  Charles Shepherd and Tony Britton
Suffolk Youth and Parent Support Group:  Barbara Robinson
Sussex and Kent ME/CFS Society: Colin Barton and David Butler
25% Group: Doris Jones
Plus several members of the public
NHS PLUS – 1.30pm till about 2.40pm
Dr Ira Madan (Director of NHS Plus and Consultant in Occupational Health at St Thomas's and Guys Hospitals London) started off by describing:
  •  The background as to how NHS Plus came into being – it was an Alan Milburn initiative to provide central guidance on occupational health issues
  •  How the CFS guideline had been initiated – by Dr Karen Pratt, Specialist Registrar in Occupational Medicine at BUPA Wellness in London
  •  How the guidance had been developed – this included consultation with stakeholders, DWP, NICE and Pat Noons at the DoH
Dr Madan explained that the main purpose of the NHS Plus guidance was to answer three basic questions:
  • What treatments are effective in enabling individuals with CFS to return to or remain in work
  • What are the predictive factors for a successful return to work in individuals who are currently absent from work
  • What is the risk of relapse and what are the risk factors for relapse in terms of non attendance or poor functioning at work
She then went through the Joint Charities Response point by point and tried to respond to all the specific criticisms.  NB: The joint charities response is available in the news section of the MEA website:
There was very critical questioning during and after her presentation.  Some of the answers were not at all convincing: eg it was decided to omit the term ME from any of the NHS Plus literature because it might confuse employers who are used to seeing CFS on sick notes!; two psychiatrists acting as external referees was not considered to be biased.
Dr Madan obviously believed that the three leaflets were fit for purpose ("We've had lots of positive feedback") but appeared to accept under pressure that some amendments might be made – but there would not be a complete rewrite.
She agreed to the MEA suggestion that there should be a meeting with a small group of charity representatives to discuss in more detail the criticisms being aired and possible amendments to the three leaflets.  Des Turner pressed her on this and emphasised that a meeting date should not be delayed – ie in weeks rather than months.
In the meantime AfME are going to send her some more information on patient evidence on CBT and GET, which she should have received via NHS Plus last year.  Dr Madan said it had never been received.
There was some discussion about the circumstances surrounding the decision by Chris Clark, former Chief Executive at AfME, to sign up to the guidance before he left his post last year. It was generally agreed that a lesson to be learnt here is that when a guideline group such as this includes a patient representative it should be someone with personal experience of the problems created by the illness.
Finally, there were questions about possible conflicts of interest – especially relating to members of the guideline development group and external referees having links to insurance companies.  Dr Madan stated that no conflicts of interest had been declared.
Dr Ian Gibson MP was unable to attend so Sarah Vero reported that although the EDM remains suspended, it remains on the parliamentary agenda.  One possible way forward is for the APPG to look at some rewording – and this will be discussed in the run up to the next APPG meeting. The MEA suggested that as publication of the NICE guideline in August may well be very close to an EDM finally being put forward, this issue might be incorportated into the wording of the EDM.
Sarah also reported that the work of the Gibson group was basically coming to an end.  Some members wanted to move on and so there would be no revision of the report.  There will be an announcement on the Gibson website:  NB:  This announcement has now been made.  It can also be read on the MEA website.
The MEA gave a brief update on developments at NICE. 
First was some feedback from the House of Commons Health Committee Inquiry into NICE that Charles Shepherd and Doris Jones had attended in the morning.  The Wilson Room in Portcullis House was packed – standing room only. Some of the DoH responses to questions from the MPs brought to mind the phrase ‘wading through treacle'.  Sir Michael Rawlins and Andrew Dillon from NICE were rather more open about the financial problems (ie the ‘postcode lottery') resulting from NICE recommendations.  David Amess (ME APPG member) asked about the NICE guideline on ME/CFS.  Sir Michael Rawlins responded by saying how important the views of patient representatives now were to NICE!   NB:  There has also been a joint charities submission to the Health Committee Inquiry into NICE.
The MEA informed the APPG about our discussions with Professor Richard Baker (Chairman of the ME/CFS Guideline Development Group), and that there would be an MEA public meeting on Saturday September 15th to discuss the NICE guideline.  Professor Baker and other members of the NICE team will be there to present the guidance and answer questions.  Details about the venue and time of this meeting will be made available on the MEA website fairly shortly.
It appears that some further amendments were being made to what everyone had assumed was the final final draft of this new medical guidance relating to DLA applications.  The MEA reported that the charities would be monitoring the situation very closely once the new guidance comes into effect – presumably still in early June.
Problems with the past (ring fenced), present, and future financing of the new NHS clinical services were raised by Christine Harrison and Barbara Robinson – with particular reference to what is happening in the new East of England SHA and East Anglia CNCC regions (ie Suffolk, Norfolk, Peterborough, South Cambs, Waveney). It was decided that NHS services would be the main topic for discussion at the next APPG meeting and that Patience Wilson, National Service Framework Manager at the Department of Health, and the Secretary of State for Health (Patricia Hewitt if she is still there), would be invited to attend.  Patience Wilson has taken over responsibility at the DoH for ME/CFS from Pat Noons.
Discussion deferred to next meeting as Di Newman was unable to attend.
Nothing new to report
Provisionally arranged for Thursday 12 July – this will also be the APPG AGM and the last meeting before the summer recess.
 Thanks to Dr Des Turner MP for chairing a very full, lively and interesting meeting.
Summary prepared by Dr Charles Shepherd, Medical Adviser to the ME Association.  The official minutes are being prepared and will appear later.
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