This is a very brief summary of key points from the APPG meeting held in Committee Room 21 at the House of Commons on Wednesday 21 October, 2009.
The meeting was Chaired by Dr Des Turner MP.
Among parliamentarians present were the Countess of Mar, Russell Brown MP, Andrew Stunell MP, Bill Wiggin MP, and Tony Wright MP..
Representatives from charities and other organisations included those from AfME, BRAME, Kent and Sussex Alternative Group for ME, The MEA, reMember, RiME, Sussex and Kent ME Society, WMMEG and the 25% Group. There were also several members of public present.
A more detailed account of the meeting will appear in the Minutes, which will be posted on the APPG website when they have been through the drafting process and agreed.
PRESENTATION FROM THE RT HON YVETTE COOPER MP, SECRETARY OF STATE FOR WORK AND PENSIONS (DWP)
The main item was a presentation from the Rt Hon Yvette Cooper MP, Secretary of State for Work and Pensions, on benefit issues. Yvette was accompanied by Dr James Bolton, Deputy Chief Medical Adviser at the DWP.
Yvette explained that she had a strong personal interest in ME having suffered from it for a period starting in 1993 before entering parliament. During this time she was very ill for a period of roughly two years and completely off work for a year. This was followed by a period of recovery with more variable health over another two years. She has now made a full recovery and manages to combine being an MP, Minister and bringing up three children! During her early days in parliament she was actively involved with the APPG when it was chaired by Tony Wright MP. However, she did not feel it was appropriate to make general assumptions about ME/CFS based on her own experience.
Yvette briefly outlined the aims behind changes to the care, welfare and benefit systems that are now taking place –in particular the introduction of Employment and Support Allowance (ESA) to replace Incapacity Benefit and the role of the Work Capability Assessment (WCA) in deciding eligibility for ESA. Following on from her personal experience with ME she fully understood the concerns being expressed about assessing the fluctuating nature of ME/CFS and the need for a flexible approach regarding any possible return to work. She believed that the new WCA for ESA claimants took these problems into account. However, she was very willing to look at the problems that were raised during the meeting.
Yvette answered a series of questions from the Chair, who also read out written questions that had been submitted in advance of the meeting, along with questions from those attending the meeting. Yvette had only intended to be there for around 20 minutes but managed to stay for about an hour.
Questions relating to all the common and very familiar problems facing people with ME/CFS were discussed. In particular:
- The role of the new Work Capability Assessment for ESA claimants – especially in relation to people being unable to sustain physical/mental activity and the post-exertional symptomatology experienced by people with ME/CFS. In response, Yvette pointed out that this assessment should not depend on a precise diagnosis but on what a claimant could and could not do from the point of view of physical and mental function.
- The type of information and training on ME/CFS that is given to DWP decision makers and examining doctors. In response, Yvette maintained that adequate training in relation to specific illnesses such as ME/CFS was part of the DWP programme.
- Difficulties in accessing assessment centres. In response, she noted these concerns, agreed that the centres must be accessible to people with disabilities, and said she is very keen to hear of specific examples.
- The way in which a patient's own GPs and specialist were progressively being removed from the opinion gathering process and replaced by doctors who knew nothing about the patient's social and medical background. In response she noted these concerns but did not indicate that there would be any shift in the DWP position.
- Providing real help for people who can and want to return to work on a flexible and/or part time basis. In response, she agreed that this was vital – citing her own experience of a gradual and flexible return to work after having quite severe ME.
- Reviewing the permitted work rules – which can be very unhelpful in the case of ME/CFS. .These concerns were sympathetically noted.
Des Turner raised the specific issue of problems with tribunals and the knowledge about ME/CFS of those who sat on the panels making these decisions. Examples of very unsatisfactory procedures at tribunals were mentioned by several of those present. In response, Yvette managed to somewhat duck the issue by explaining that the tribunals are classed as being ‘independent' and their administration comes under the Ministry of Justice. This is clearly going to remain an important issue on the parliamentary agenda.
Tony Wright MP made the point that something was clearly wrong with the benefit assessment system when so many people with ME/CFS were failing on their first application but then being successful on appeal.
Charles Shepherd questioned the DWP auditing and monitoring of the success/failure rate of applications for ESA from people with specific illnesses, including ME/CFS. In response, Dr Bolton explained that no figures are available.
With regard to DLA and the government Green Paper, Yvette was asked about the mixed messages coming from ministers on the future of DLA. In reply, she acknowledged the concerns being expressed and made it clear that DLA for people of working age was not under review. She stated that a government statement on DLA would be made on Wednesday 22 October by the Rt Hon Andy Burnham
At the end of this presentation. Charles Shepherd asked Dr James Bolton if he would be willing to meet with ME/CFS charity representatives to discuss these concerns in more detail and he agreed to do so. This meeting is now being followed up through the Forward ME group.
APPG INQUIRY INTO NHS SERVICES IN ENGLAND Des Turner explained that the report was now being written with the intention of having it ready for presentation to the APPG at the next meeting in early December. A Minister from the Department of Health will be invited to attend this meeting to respond to the report.
APPG LEGACY PAPER Des Turner explained that the APPG would have to be reformed after the general election – which will have to take place before June 2010. And with him standing down as an MP we would need to find a new Chair in 2010. To coincide with the winding up of the APPG, a Legacy Paper is being prepared which outlines the key areas of work and actions that have been taken by the APPG during the current parliament, as well as future actions. The APPG is keen to receive input on this from people with ME/CFS and a copy of the current draft will be posted on the APPG website. Comments on this draft must be received by the Secretariat by 19 November – so that further discussion on a further draft can take place at the December meeting.
STATEMENT BY WMMEG (West Midlands ME Groups Consortium): Jill Cooper read out a further statement relating to issues about patient representation, transparency and the suitability of the education and training programme provided by the ME/CFS Clinical and Research Network and Collaborative (CCRNC) This was followed by a very lively discussion on the current state of NHS services for people with ME/CFS.
XMRV: A rather informal discussion on various aspects of the new viral research findings took place.
Date of next meeting: Provisionally fixed for Wednesday 2 December
APPG website: www.appgme.org.uk