Briefing note for Westminster Parliamentarians prepared by the West Midlands ME Groups Consortium
The role of the new British Association for CFS/ME (BACME) in the training of doctors and healthcare professionals in ME should be examined by the All Party Parliamentary Group on ME (APPG) after the group reforms – preferably before the next BACME training and education conference due to be held in October 2010.
Copies of the full 4-page statement can be downloaded here 100624_-_mea_brief_for_parliamentarians_wmmeg Please make it available to your MP. Mr David Amess MP has agreed to chair a meeting at Westminster on 30 June (dated changed later to 7 July)in order to seek the reformation of the APPG.
Who are BACME?
BACME, chaired by consultant paediatrician Dr Esther Crawley, appears to have assumed the functions of what used to be called the CFS/ME Clinical and Research Network and Collaborative (CCRNC) but there is little information available about this change in the public domain.
Who wants the APPG to look at the BACME role?
A total of 26 UK ME support groups and two national ME charities who co-signed a statement on the subject issued by the West Midlands ME Groups Consortium (WMMEG).
Who are WMMEG?
WMMEG comprises local ME groups from Herefordshire, Solihull and South Birmingham, Shrop- shire, Walsall, Warwickshire and Worcestershire. Between them these West Midlands groups have each had many years experience of running local ME support groups and collectively have spoken to or have had contact with thousands of people with ME. Cumulatively, the six individual groups representatives have a total over 150 years of being affected by ME, either suffering personally or caring for someone with ME.
What did WMMEG say to the APPG in March 2010?
WMMEG took the opportunity to place on record their gratitude to the APPG on ME for holding open meetings. This has given pwME and their families the opportunity to put their own questions to speakers and a democratic opportunity to express concerns and raise important issues.
The APPG are aware of our ongoing concerns with regard to the need for appropriate education and training of those healthcare professionals involved in any ME/CFS services and the particular role of BACME in disseminating training. There remain issues with regard to balance, representation and democratic accountability.
The group noted that three recommendations (Number 6-8) in the APPG Inquiry into NHS Services Report dealt with the essential role of training for medical students, GPs and supporting health professionals.
The APPG Inquiry report said: “The Group feel that it is inadequate for professionals to treat patients with ME/CFS when they have not been fully trained in the particular characteristic of this disease”.
This most recent WMMEG letter concluded by requesting that “a representative from CCRNC/ BACME, is invited to a future APPG on ME meeting in the not too distant future. This would give the APPG on ME an opportunity to hear about the CCRNC/BACME, and people affected by ME an opportunity to voice their questions on the crucial issue of education and training.
Why is WMMEG concerned?
They think that BACME, which has apparently taken over as the training forum for NHS staff involved in the care of people with ME/CFS, needs to be more publicly accountable, would benefit from wider patient participation and is too much under the influence of the psychiatric lobby.
What are BACME’s aims and objectives?
Extracts from BACME’s Constitution:
BACME is a multidisciplinary organisation which exists to promote and support the delivery of evidenced based treatment for children, young people and adults with CFS/ME throughout the UK.
• 2.2.1 To champion evidence-based approaches to the treatment of CFS/ME, such as those provided in the NICE guidelines.
Members of the BACME will be represented by an executive committee which will comprise one representative nominated from each CNCC, eight elected individual members, two to four patient/carer members, and one observer/member from each of a maximum of four National UK CFS/ME organisations which support
the objectives of the BACME.
What does this mean?
This Constitution makes it clear that BACME is:
• Totally independent and, as far as can be ascertained, is accountable to no-one.
• Responsible for most of the education & training for NHS CFS/ME health professionals.
• Not obliged to report back on anything they do to anyone but themselves.
• Only open to patient representatives who support NICE Clinical Guideline 53 and yet again, the severely affected with ME appear to have no representation whatsoever.
How does this affect patients?
• The majority of health professionals in NHS clinics for CFS/ME patients receive their training & education from BACME influenced conferences and training workshops, therefore patients will only receive evidence based treatments as described in the NICE Guidelines for CFS/ME. The recent patient led High Court challenge to NICE in 2009 made it clear that over 90% of local ME groups did not support the guidelines, therefore, for BACME to solely promote something that is so deeply unpopular appears to be the antithesis of democracy, and ignores patient opinion.
• The influence of BACME on education & training sometimes leads to inappropriate assumptions about ME in the NHS clinics eg “often maintained by illness beliefs that lead to exercise-avoidance”; “deconditioning”. (Liverpool CFS Clinic Handout used by the FINE trial). This can cause further difficulties for patients with ME who often feel their illness is misunderstood by GPs and NHS clinics and that no appropriate advice or treatment is available for them – especially the severely affected patients.
• Leads to major difficulties for people with ME in obtaining benefits and social care.
What would WMMEG like to see?
• The development of a diagnostic test for ME, and some seriously funded and joined up biomedical research into the aetiology and pathogenesis of ME carried out at all LMDTs.
• Appropriate training and education for health professionals which acknowledges the G93.3 classification of ME as a neurological illness.
• ME/CFS health conferences for the training and education of NHS health professionals, aimed at providing a biomedical research agenda and the development of effective treatments that actually enable the patients to be well enough to go to work, rather than including “Pathways to Work” as a topic.
• BACME to look at other evidence contained in some 4,000 published research papers rather than just focusing on CBT & GET advocated in NICE Guideline.
• Information available for all to see.
Who monitors BACME and the NHS Services for CFS/ME?
Not only is BACME not monitored by the Department of Health, but neither are the NHS services for CFS/ME – although the NHS logo was prominently displayed in the BACME 2007 & 2009 conference documentation). Lord Darzi (Department of Health) confirmed that an assessment (of NHS services for CFS/ME) has not been made. He added that it is the responsibility of strategic health authorities to ensure that services are available, with appropriately trained staff, for people diagnosed with CFS/ME. www.publications.parliament.uk/pa/ld200809/ldhansrd/text/90506w0001.htm#09050675000189.
Short summary of events leading up to WMMEG’s request to the APPG
• 2007: WMMEG first raised their concerns about the psychological bias of the education and training conference held by the CCRNC, at an APPG meeting. No action was taken.
• 2009 March: WMMEG sent their “ME/CFS – Education and Training in the NHS” statement to both the APPG and Forward-ME before the second BACME conference in Milton Keynes. No action taken.
• 2009 July: Dr Esther Crawley (Chair of BACME) and Dr Hazel O’Dowd attended Forward-ME meeting to give CCRNC presentation and answer questions. http://appgme.org.uk/Downloads/minutes/appgmins2009/Transcript_APPG_21_October_2009.pdf
• 2009 October 30: WMMEG wrote to APPG asking some serious questions about BACME. The Countess of Mar (Secretary) replied advising us to take up these issues with the DoH.
• 2009 December: WMMEG wrote to DoH who said that they were unable to answer any questions on BACME as this organisation was self governing and did not come under the remit of the DoH
• 2009 December: Following the publication of the APPG on ME Inquiry into NHS Service Provision for ME/CFS Interim Report – it was noted that there was no mention of BACME and their influence on NHS services. Dr Charles Shepherd of the MEA offered to make the issue of the BACME a priority item on the agenda for a future APPG meeting.
• 2010 March From the ‘APPG on M.E. Legacy Paper’: possible APPG on ME Speakers included ‘Chair of the NHS CFS/M.E. Clinical & Research Network and Collaborative (CCRNC) Conference’ http://appgme.org.uk/Downloads/DRAFT_APPG_legacy_paper_V5_27_11_2009.pdf
WMMEG (West Midlands ME Groups Consortium)
Herefordshire ME/CFS/FMS Group; Solihull & South Birmingham ME Support Group, Shropshire ME Group; Walsall & West Midlands ME Link; Warwickshire Network for ME; and Worcestershire ME Support Group