Formal minutes from Tuesday’s All Party Parliamentary Group (APPG) meeting will be posted in due course. The following are informal notes taken by Sir Peter Spencer.
Attendees
The meeting was attended by four Parliamentarians – Annette Brooke MP, Ian Swales MP, Martin Vickers MP and the Countess of Mar.
In addition – research assistant to Peter Luff and representatives Action for M.E., the ME Association, BRAME, ME Research UK and the 25% Group.
Welfare rights
The Group reviewed ongoing reforms to the welfare system.
Professor Harrington’s report on his second annual review of the Work Capability assessment is expected to be published in November and will include specific recommendations to change the descriptors for fluctuating conditions such as M.E.
Examples were given of recent assessments by Atos that have been well below the required standard causing considerable distress
The Group decided to ask employment minister Chris Grayling again to come and meet them. Concerns were raised that the material being used to train Atos assessors about M.E. is out of date and inappropriate.
The Group supported the Department for Work and Pensions (DWP) select committee report recommendation that emphasises the role of the government in encouraging employers to remove the barriers to remaining in, or returning to, work encountered by people with disabilities.
Research
The Group was updated by Charles Shepherd on the launch of the jointly funded biobank which launched in August. He reminded everyone that the Medical Research Council (MRC)’s M.E. research projects selected from those submitted in June in response to the special call, are due to be announced in December.
Main discussion centred upon Rituximab. The findings of the Norwegian study show considerable promise so long as they can be replicated and administered in a way that minimises harmful side effects. It was pointed out that there are other drugs that deplete B cells without such worrying side effects as Rituximab. The APPG is aware that this research has generated considerable interest among many patients and will write the Chair of the MRC and to the Chair of the MRC Expert Group to seek their reaction to this trial and ask for their help in identifying getting the trial replicated in the UK.
The recent problems with XMRV research in the USA were also mentioned.
Peter Spencer told the group about Action for M.E.’s call for proposals to fund two pilot research projects next year with a budget of £50K.
NHS Services
Peter Spencer introduced a short paper explaining that Action for M.E.’s wide consultation had strongly supported campaigns at both local and national level to protect, extend and improve secondary care services throughout England and the rest of the UK – especially for children and for the most severely affected.
The recent closure of the inpatient unit at Romford and the imminent threat to the children’s M.E. service at Frimley were cited as examples of the nationwide threat to specialist M.E. services.
The Group acknowledged that:
- there is systematic discrimination against M.E.
- there is a strong economic argument that early diagnosis and intervention mitigate the impact of M.E.
Meanwhile, there are major concerns about what will happen to commissioning within the redesigned NHS.
The Group is keen to help. What MPs need most of all are specific examples from within their own constituencies so that they can question Ministers in the House of Commons.
Lady Mar has undertaken to table amendments to the Health and Social Care Bill to protect M.E. patients from unfair commissioning practices.
Next meeting
The Group is meeting Tim Loughton MP, Minister for Children in his office on 2 November. It will aim to hold its next meeting in early December – date to be announced.
