APPG on ME: Summary of meeting and AGM: 12 July 2007

Note: This is a summary of the APPG on ME meeting prepared by Dr Charles Shepherd of the ME Association and not the official Minute.  The Minutes of this meeting will be issued at a later date.  Further information on the NHS Collaborative Conference on CFS/ME referred to in this Summary can be read on ME Agenda here

Summary of key points to emerge from APPG meeting held in Committee Room 17 at the House of Commons on Thursday 12 July 2007 from 1.30pm – 3pm

PRESENT

Parliamentary
Dr Des Turner (Chair)
David Amess
Celia Barlow
John Bercow
Dr Ian Gibson

Koyes Ahmed (Office of Des Turner)

Secretariat

AfME: Sir Peter Spencer and Heather Walker
MEA: Tony Britton, Neil Riley and Dr Charles Shepherd

Support Groups

25% Group: Doris Jones
BRAME: Christine and Tanya Harrison
East Anglia ME Patient Partnership Network: Barbara Robinson
North London ME Network: Hazel Griffiths
Peterborough ME and CFS Support Group: Diane Newman
RIME: Paul Davis
Remember: Bill and Janice Kent
Sussex and Kent ME/CFS Society: Colin Barton
Worcester ME Support Group: Jill Piggott

Individuals

Augustine Ryan
Annette Barclay
Dr Ann Gerken
Criona Wilson
Several people who have ME were also present

APOLOGIES

Jane Colby (Tymes Trust)
Various members of the APPG

APPG ANNUAL GENERAL MEETING

It was agreed that all the current officers of the group will remain in post.

Chair: Des Turner

Vice Chairs: Andrew Stunell and Tony Wright

Secretary: Ian Gibson

Treasurer: David Amess

Peter Spencer said that given the number of people affected by ME, and the considerable economic cost to the country, there ought to be more MPs attending these meetings.

MAIN SUBJECT FOR DISCUSSION

UPDATE ON DEVELOPMENT OF NHS CLINICAL SERVICE PROGRAMME FOR ME/CFS

INVITED SPEAKER: DR TERRY MITCHELL, REGIONAL CLINICAL CHAMPION FOR ME/CFS IN THE EAST OF ENGLAND

Des Turner started off by pointing out that following the very recent ministerial changes at the Department of Health we had not been able to obtain the attendance of either the Secretary of State for Health (Alan Johnson) or the junior minister who will now be dealing with ME/CFS matters. We understand that this may be Ben Bradshaw.

Neither had there been any success in obtaining a civil servant from the DoH to respond to concerns about funding.

Dr Terry Mitchell opened his presentation by describing how his clinical involvement with ME/CFS dated back to 1984/5. At this time he was fitting ME/CFS patients into his spare time at James Paget Hospital in addition to all his other haematology and hospital work.

His waiting list and workload steadily increased over the years. This led to ME/CFS service provision, which was taking in patients from much of Norfolk and Suffolk, to be transferred to Waveney PCT.

In 2003, the DoH produced £8.5 million in ring fenced funding (over two years) for the development of clinical services in England.

Dr Mitchell was involved in three local bids for funding:

1 Extra funding for the Norfolk and Suffolk service (multi disciplinary team)

2 New funding for a paediatric service in Cambridgeshire led by Dr David Vickers plus an adult service for Cambridgeshire and Greater Peterborough – ie two local multidisciplinary teams (LMDTs)

3 Establishment of Waveney as a clinical network co-ordinating centre (CNCC)

All three bids were successful and received funding. The total amount for 2005 – 2006 for all three components came to £456,000

The money was put towards additional therapists, extra medical time being made available, reduction in waiting lists in Norfolk and Suffolk and a new service for Cambridgeshire and Greater Peterborough.

The total population covered (Norfolk + Suffolk + Peterborough + Cambridgeshire) was 2.1 million. In this total were an estimated 8,000 potential ME/CFS patients.

During 2005 – 2006 the total workload for the equivalent of almost 7 full time staff was 8717 patient contacts (including 581 new patients). This made Norfolk, Suffolk and Cambridge combined the busiest group in England.

Dr Mitchell described the way in which the service was built up to provide a comprehensive package of care including both diagnosis and on-going management via a therapy team. This is based on a biomedical model with a flexible approach to activity management and appropriate symptomatic management. The service also acknowledges that, as in any chronic illnesses, problems such as depression can also occur.

The service works closely with local patient groups who have formed the East Anglican ME Patient Partnership Network.

Overall, their own audit and the feedback from patients has been extremely positive.

Dr Mitchell then turned to his attention to concerns about the future funding and development of these services

At a national level, of the original £8.5 million, only £6.5 million was allocated for clinical development.

In the financial year 2006 – 2007 the DoH reduced this by 15% to £5.236 million as part of the need to reduce costs across the NHS.

The initial £8.5 million was ring fenced to the end of March 2006 but was subsequently transferred to an anonymous DoH financial ‘bundle’.

The issue of local funding problems for 2006 – 2007 (ie a significant reduction in funding for all clinical services and the CNCC) was not raised until October/November 2006 in Norfolk and Suffolk, and January/February 2007 for the Greater Peterborough/Cambridgeshire service. At no time did the Investment Steering Group for the £8.5 million investment inform the clinical teams involved about the reduction in funds.

The situation for 2007 – 2008 appears to be a continuing and significant deficit (of around £62,400) that will predominantly involve adult services.

The impact is such that paediatric services will probably continue much as before in Cambridgeshire; the Greater Peterborough adult service will have a likely budget shortfall of 23%; Waveney is likely to have a reduction in budget of at least 21%.

The result of the financial changes following the removal of ring fenced funding has been ‘organisational chaos’. Some patients have not even been placed on waiting lists. Most are waiting much longer than 13 weeks (one case of 38 weeks) for an appointment. There are also huge uncertainties about the future of the adult services. There is a sense of betrayal in the teams involved in that all of their hard work is now being jeopardised. Patients are carers are rightly concerned and fearful of the future without adequate support.

Des Turner then opened up a discussion on the various issues raised by Dr Mitchell.

In doing so he pointed out that we are dealing with a familiar story of new health initiatives being set up with ring fenced money. Those involved are then faced with serious difficulties in maintaining the service once they have to compete with money from the DoH bundle. The money that is supposedly there for ME/CFS quite simply starts to disappear….

A diverse range of points about NHS service provision – both positive and negative – were made during discussion, including contributions from:

Christine and Tanya Harrison and Barbara Robinson who described how the services provided by Dr Mitchell and his team were much appreciated throughout East Anglia. ‘An oasis in a desert’ was among the descriptions used.

Annette Barclay who raised the issue of what impact the new NICE guideline would have on NHS clinical services and to what extent their guidance would be mandatory on clinicians.

Dr Ann Gerken (who works with Dr Mitchell) who pointed out that there was no simple audit system in place and that a very complicated database has not progressed.

Jill Piggott who summarised a two page statement prepared for the APPG by the West Midlands ME Groups Consortium (ie Herefordshire ME/CFS/FMS Group; Shropshire and Wrekin ME Support Group; Solihull and South Birmingham ME Support Group; Warwickshire Network for ME; Worcestershire ME Support Group) regarding the closure of the West Midlands CNCC due to lack of funding. The statement went on to criticise the way in which they believe the CNCC Collaborative for ME/CFS is placing far too much emphasis on psychological aspects. The final part of the statement condemned the proposed agenda for the forthcoming collaborative conference – in particular for the way this is dominated by the psychosocial approach to management.

Paul Davis who read out some letters from people who had contacted RIME to say that they were not happy with the new services and the approach being offered in some of the new clinics. Several of those present raised strong objections to the criticism of the East Anglian service and pointed out that this had not come from someone who was a service user.

Peter Spencer who read out a short statement from AYME describing how 2 out of the 11 paediatric services (ie those in Hertford and at Guys and Thomas’s Hospital in London) had now closed.

Criona Wilson who spoke about the circumstances regarding service provision that had surrounded the tragic death of her daughter Sophia

NB: A more detailed account of these contributions will appear in the APPG minutes

At the close of the discussion warm appreciation was expressed by many of those present for the work being carried out by Dr Mitchell (who has now retired form the NHS) and other members of his team.

Des Turner concluded by saying that there is a deteriorating situation which needs to be brought to the attention of the Secretary of State for Health – who will now being invited to attend the next meeting of the APPG.

ADJOURNMENT DEBATE

John Bercow referred to his recent meeting with the MEA at which all the current concerns relating to DWP medical guidance, NHS Plus occupational health guidance, NICE guidelines, NHS services and MRC research strategy – were discussed in some detail.

John Bercow felt that the best way to bring these matters to wider attention would be through a 90 minute adjournment debate once parliament returns after the summer recess. To obtain a debate would involve entering a parliamentary ballot – but if a number of MPs joined in there was a reasonable chance of success.

[NB: The MEA is preparing a comprehensive media and political briefing paper on these issues, based on the paper we prepared for John Bercow. This will be available shortly and can be used for both media and political campaigning.].

MENTAL HEALTH ACT AND MENTAL CAPACITY BILL

Diane Newman raised her concerns about various aspects of this proposed legislation and the possible impact for people with ME.

ANY OTHER BUSINESS

NB: As the meeting was now running over time, and almost all MPs had left, there was very little opportunity for further discussion.

1 EARLY DAY MOTION

Charles Shepherd pointed out that as the APPG is now involved in trying to secure an adjournment debate it may be sensible to defer any further work on a revised EDM. It was decided that an EDM would remain as a future possibility – depending on whether an adjournment debate can be obtained in the ballot.

2 DWP MEDICAL GUIDANCE

Charles Shepherd reported that Version 10 of the new DWP medical guidance for DLA applications had now been sent to charity representatives involved in the negotiations. The MEA has made this available on their website along with their response. CS drew attention in particular to sections 29 and 30. The MEA believes that people with moderate ME/CFS will have great difficulty in obtaining either care or mobility components of DLA as a result of the content of 29. The content of section 30 on severe ME/CFS will mean that only some people with severe ME/CFS will be successful in obtaining either component. The MEA believes that the new guidance will not improve an already very unsatisfactory situation and have, therefore, refused to endorse the guidance. We understand that the new guidance will come into effect on 20 July.

Christine Harrison pointed out that BRAME was very disappointed to find that their suggestion for the inclusion of a disability rating scale had not been accepted in the final version.

3 NHS PLUS

Charles Shepherd reported that following on from the presentation by Dr Ira Madan at the last meeting of the APPG she has agreed to meet one representative from AfME (Peter Spencer) and the MEA (Neil Riley) on Monday 12 July. In correspondence over the attendance at this meeting the MEA had stated that the charity group must consist of more than two representatives. However, this was not acceptable to Dr Madan and we were left with the current option or having no meeting at all.

4 COLLABORATIVE CONFERENCE

Doris Jones referred to very serious concerns that are now being expressed by many patient group representatives about the predominantly psychosocial management presentations at the AfME/AYME and NHS Collaborative Conference that will take place in October. More information on the conference here

DATE OF NEXT MEETING

This will be on a Thursday during November but will obviously depend on dates which may be suitable for the Secretary of State for Health.

NB: This is a personal summary prepared for MEA trustees. The APPG minutes will appear later.

Charles Shepherd
Honorary Medical Adviser, ME Association

ENDS

15 July 2007

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