These are brief notes on key points to emerge from the meeting of the All Party Parliamentary Group (APPG) on ME that was held from 3pm to 5pm in Committee Room 18 at the House of Commons on Wednesday 8 October 2008. Please note that these are not the APPG minutes. The APPG minutes contain a far more comprehensive account of what took place and are being prepared by the Secretariat. They will be made available later.
Dr Des Turner MP (Chairman)
Andrew Stunell MP (Vice Chairman)
Tony Wright MP (Vice Chairman)
Rt Hon Tom Clarke MP
Kerry McCarthy MP
Janet Dean MP
Damian Green MP
Sir Robert Smith MP
The Countess of Mar
Koyes Ahmed (Office of Des Turner MP)
Tony Britton (MEA)
Dr Charles Shepherd (MEA)
Sir Peter Spencer (AfME)
Heather Walker (AfME)
REPRESENTATIVES FROM ME/CFS CHARITIES AND OTHER ORGANISATIONS
Jane Colby (Tymes Trust)
Christine and Tanya Harrison (BRAME)
Joy Birdsey (Kent and Sussex Alternative Group for ME)
Doris Jones (25% Group)
Janet Taylor (Kirklees Independent ME Support Group)
Di Newman (Peterborough ME and CFS Self-Help Group and Cambridgeshire Neurological Alliance)
Bill and Janice Kent (ReMEmber) Barbara Robinson (Suffolk Youth and Parent Support Group) Sue Waddle (MERUK) Paul Davis (RiME)
There were also a number of people with ME/CFS present
This was the main event of the afternoon. However, time was limited to approximately 30 minutes as the Minister also had to attend important meetings in relation to the crisis in the money markets.
James Purnell, who was accompanied by Dr James Bolton, Deputy Chief Medical Adviser at the DWP, first gave a short presentation on the reforms that are taking place. This was a very general review covering familiar territory. The Minister concentrated on the reasons why the government felt that reform of this part of the benefit system was necessary (eg need to shift the focus onto what disabled people can do rather than what they cannot do) along with what steps the government have taken (eg Pathways to Work and Access to Work schemes) and propose to take (eg additional financial help) to help disabled people back into work. All very positive stuff – in theory. The Minister did not really go into any great detail about the particular problems and concerns facing people with ME/CFS.
The Minister spent the rest of the time answering as many of the very good written questions that had been submitted in writing to the APPG Time was also allowed for supplementary oral questions from those present.
Among the topics covered were:
- On the same strand it was pointed out by the MEA that the new personal capacity tests and questions, while being described as accurate and fair, have not been subjected to any sort of independent scientific validation – and that tests such as being able to perform a physical or mental task as a one off event (eg lifting a set weight) does not necessarily mean that someone can sustain or repeat such an activity over a prolonged period of time.
- Appeals procedures. The APPG was assured that appeal procedures would remain.
- The stress of going through appeal procedures when a benefit is refused. The Minister acknowledged that this is an inevitable and stressful process for some.
- Problems facing people who are on higher incomes when it comes to criteria in the new Employment Support Allowance – which allows people to work for up to 16 hours per week at minimum wage rates but still claim benefit. There was no easy answer to this one.
- The scepticism and non belief about ME/CFS that is still present in some doctors who are doing medical examinations for the DWP. The Minister believed that these independent medical assessors will now have the necessary knowledge about ME/CFS through training and that there was no pressure being placed on them from the DWP to meet targets for getting people off benefit.
- The need to take note of what the person’s GP – "the person who knows you best" – has to say about work suitability/capability. The Minister felt that GPs could not be the sole source of medical information as they do not always provide the necessary level of independence.
- Hostility or lack of interest by employers towards people who are ill or disabled returning to work. The Minister acknowledged that much more work needs to be done here.
- Reviews of DWP medical guidance for adjudicators and medical examiners. The Minister stated that the DWP regularly reviews its medical guidance on conditions and the next review will take place in 2009.
In addition, several people pointed out quite forcibly that people with ME/CFS want to get back into work and would do so if they could. The problem they face is that ill health plus disability means they cannot work and are consequently very worried about losing benefits as a result of the changes to ICB that are taking place.
Jane Colby and Des Turner updated the meeting on follow up to the Department of Children, Schools and Families on issues that were raised in relation to children with ME at the last APPG meeting.
The Countess of Mar reported on an hour long meeting that had taken place in the House of Lords at 2pm the same day.
She was fully committed to tackling the huge injustice faced by people with ME and wanted to do all she could to help.
The aim of this meeting was to bring together representatives from a number of charities and other organisations that represent people with ME. Those present at the meeting described the role of their organisations, the key issues they felt were important at this point, and what action needed to be taken. Areas of both agreement and disagreement were discussed.
The Countess of Mar has kindly agreed to chair a further meeting of the group which will allow a more detailed discussion of the issues to take place and look at how the various charities and organisations might work together on issues of common concern.
She stressed that nothing was being done in secret and that the minutes of this meeting will be published in due course.
The Countess of Mar is hoping to set up a website so that people can have easy access to the minutes and information about what the group is doing.
Des Turner gave further details of the APPG Inquiry into NHS Services. Following discussions with the Secretariat on a number of practical issues relating to setting up this inquiry, a draft Terms of Reference has been produced. This document was circulated to the meeting and it was agreed to accept this in principle subject to minor amendments..
The next step is to set up the parliamentary team of MPs and members of the House of Lords that will carry out the Inquiry.
As with the Gibson Inquiry into Research, the process will involve gathering written and oral evidence from people with ME/CFS and those involved with providing NHS services.
A great deal of work will be involved – so the issue of administration and possible sources of funding were also discussed.
Des Turner also dealt with some of the misunderstandings that are already appearing – for example, there is no intention of sending people round to inspect and report on what is happening in the new clinics.
DRAFT terms of reference for APPG Inquiry on NHS service provision 8 Oct 09.pdf
The meeting concluded with the above two presentations from Di Newman. I have asked Di for a summary of they key points that she made and this will be inserted into this summary as soon as possible.
After some lengthy discussion on various queries relating to the previous minutes, it was proposed by the Countess of Mar, and seconded by Charles Shepherd, that amendments to the minutes must now be received by the Secretariat no later than one week prior to the next meeting.
This will hopefully take place in early December.
Summary prepared by Charles Shepherd, Hon Medical Adviser, The ME Association