Forward-ME: Minutes of meeting 24 November 2009

Forward-ME: Minutes of meeting 24 November 2009


Ed: Forward-ME is a caucus group to the All Party Parliamentary Group on ME (APPG on ME) convened by the Countess of Mar in order to “hammer out areas where [the national patient organisations] shared common ground”.

Membership of Forward-ME is by invitation of Lady Mar, who also chairs these meetings. Members of the public are not permitted to attend the meetings, either as participants or observers. When the Countess of Mar had announced her desire, in mid 2008, to convene a group away from the APPG on ME, no discussions had taken place with the ME community around how, and on what basis it would be decided to whom invitations to participate in these meetings would be extended.

Nor had it been discussed whether the ME community would welcome such a group convening behind closed doors in between meetings of the APPG on ME (which members of the public are able to attend). Nor was it discussed who would be setting the agenda for these meetings.

Forward-ME meetings are attended by representatives of Action for M.E., the ME Association, AYME, The Young ME Sufferers Trust, BRAME, reMEmber (The Chronic Fatigue Society) and Mrs Sue Waddle, on behalf of ME Research UK.  

The 25% ME Group had been a member of Forward-ME but withdrew from the group following the “Countess of Mar NICE Guideline” issue.  Lady Mar was also asked to stand down as Patron to the 25% ME Group.

Invest in ME are also members of the group but have been dithering for sometime now over whether to also withdraw their support.

Since Forward-ME was convened, no further meetings of the ME Alliance have been held. It would appear that these meetings chaired by Lady Mar have become a substitute for (an extended) ME Alliance, although no formal statement on behalf of the Alliance has been issued around its current status or its future.

Correspondence between RiME and Lady Mar

Statement from Invest in ME on Forward-ME

Statement from 25% ME Group on Forward-ME


Minutes of the meeting held on Tuesday 24 November 2009

At the House of Lords

1. Present:

Christine Harrison – BRAME
Bill and Janice Kent – ReMEmber
Peter Spencer – AfME
Charles Shepherd – MEA
Sue Waddle – MERUK
Margaret Mar – Chairman

2. Apologies:

Mary-Jane Willows – AYME
Jane Colby – TYMES Trust
Tanya Harrison – BRAME
Kathleen McCall – Invest in ME

3. Dr James Bolton, Deputy Chief Medical Adviser, Department for Work and Pensions.

The Chairman introduced Dr Bolton and thanked him for agreeing to address the Group.

Dr Bolton began by saying that the health and work agenda provided a lot to talk about. He had been looking at some graphs which showed that proportionally, there were more people of pensionable age, fewer people of working age, and those of working age were getting older. As the working population grew older they suffered from more adverse health conditions. The question then arose as to how to support people with health conditions in work. It was not only for economic reasons. There was a huge amount of evidence that showed the benefits of being in work and that being out of work was harmful.

This was the challenge. It would be necessary to get individuals, GP’s and employers to talk to each other and to work together. The current medical certificate or ‘sick note’ showed only that an individual was fit or not fit for work. This was in contrast with the proposed new ‘fit note’, for which legislation would be required, which would be used for people in work who would be capable of doing some kind of work which was not necessarily the same work as they had been doing. The GP would be expected to recommend which types of work were suitable. This would mean that appropriate and reasonable adjustments may have to be made in the workplace.

It was intended that pilot schemes would be run to make sure that people got appropriate treatment as soon as possible and that they were helped to get back to work. If these were successful the procedures were introduced universally. Most big businesses had access to occupational health services and were already able to cater for some changes. For small and medium enterprises (SME’s) an occupational health line with employment advisors would be appointed to provide an advisory service. This, again, would be piloted.

The DWP accepted that some people could not work. A new benefit, the employment support allowance and the new medical assessments had replaced the old incapacity benefits medical assessments that had been around for about 15 years. There had been huge changes in, for example, health care and employers’ practises and responsibilities and it was clear that the system needed to be changed. One year in to the new scheme, the DWP was beginning to understand how the system was working, there was to be an independent review soon – possibly in the spring. They were also getting feedback from representative groups and appeals outcomes. It was intended that they would refine the system as they went along.

There was also support provided for people with health conditions who were in receipt of job seekers allowance; in particular supporting them to get back into work by ensuring that they could work reasonable hours; that their work was appropriate and that they had suitable access. Employers would be given help with costs to make necessary changes. Very often, with relatively small changes, people could be kept in work.

4. Questions and Answers

Peter Spencer asked how Dr Bolton saw ME/CFS when compared with other long-term chronic conditions. Were there areas where they were seen as similar and others where there were differences? Dr Bolton explained that work-focussed assessments for entitlement purposes, irrespective of the condition, people would be affected in different ways. Their purpose was to assess people’s functions and limitations and to understand what they need and to support them in an appropriate way. He asserted that there was nothing special about ME/CFS or any other medical condition, but only in relation to functional assessments for benefit entitlement purposes.

The chairman commented that she had convened a meeting with Dr Aylward, then Head of Benefits Agency Medical Services, in the same room 1n 1994 to discuss the problems being encountered by benefits claimants who suffered long-term fluctuating conditions. Little seemed to have changed in attitudes to ME/CFS during the intervening years as there continued to be doubts about the credibility of the illness. Were there any ideas as to how this difficulty could be addressed in so far as the DWP was concerned? Dr Bolton said that the DWP guidance was very clear about the criteria concerning fluctuating conditions and the functional impairments that were associated with these conditions. These were the criteria against which medical reports were provided. There was no discrimination between conditions. All conditions were judged on their functional effects. Medical certificates were used only as a guide to the type of questions that should be asked. They were a gateway to benefits prior to assessment.

Christine Harrison asked whether Job Centre Plus staff would be sitting in doctors’ surgeries as she was concerned that patients might feel intimidated or inhibited. Dr Bolton told her that they would be in surgeries but not in doctors’ consulting rooms. There had been some very positive feed back as the advisers were able to provide speedy access to benefits and other support measures. It was voluntary.

Charles Shepherd asked about training for ATOS doctors and lay assessors, as there appeared to be considerable ignorance about the seriousness of the illness. He gave an example of the way the system seemed to be failing. The assessments did not seem to be relevant to fluctuating conditions. People with ME/CFS were not getting ESA . Dr Bolton was aware of the difficulties. Practitioners were not supposed to take a snapshot. The message was constantly being reinforced. Where the practitioner had not acted appropriately he suggested that claimants should complain to ATOS customer services. Staff could be retrained or sacked if appropriate.

Christine Harrison gave an example of the unreasonable questions that were posed by examining doctors. She remarked that the system was not satisfactory. The claimants wanted to have their dignity respected. CFS/ME seemed to be in a world of its own. Janice Kent gave examples of polite and helpful doctors. She asked why some could do it, why couldn’t they all do it?

Christine asked whether an information pack would be helpful. Dr Bolton said that they had information, but if new information about ME/CFS became available he would consult Forward-ME about a new pack.

Peter Spencer asked how best Forward-ME could work with the independent review. There was a great deal of evidence that for many the experience was not what it should be. He asked how data should be collected as the numbers and narrative evidence were overwhelming. Charles Shepherd asked about the timescale for the review. Dr Bolton said that the work would have to be put out to tender, as it was to be conducted independently. There would then be a call for evidence. This would be likely to happen in the spring. It was likely that the process would take at least a year. He would be willing to accept any useful information personally.

Sue Waddle commented about the appeal tribunals. She had heard that, in their field, ME/CFS was the new backache and that it was regarded with a great degree of cynicism. Dr Bolton replied that the tribunals were fiercely independent of the DWP and were the responsibility of the Department of Justice. However, he meets with the Medical Member, Dr Jane Rayner, regularly and would ask her whether she would consider accepting an invitation to address Forward-ME.

Bill Kent commented on the length of the application form for ESA – 52 pages. He explained that completing the application form was very complicated for people with cognitive or memory problems. Dr Bolton agreed that they were not easy, but there was help available in Job Centre Plus offices or over the phone.

Janice Kent and Christine Harrison both asked about permitted work rules. They made the point that some people would never be able to do a full job or even a full part-time job, though it often helped their morale if they could do a little work to pay for extras. Those with professional qualifications could only work for a very few hours at their normal level of pay before they broke the earnings rules. People with long-term conditions needed the security of knowing that they had an 104 week cushion. It would be helpful if that could be extended by two further periods of 52 weeks before they lost benefit entitlement. Peter Spencer asked why this was such a difficult issue. The rules appeared to be too rigid and acted against the interests of most genuine people. He suggested that what was needed was an intelligent system that would allow people to return to work gradually. Dr Bolton said it was difficult to balance support and encouragement. He would talk to a colleague whose responsibility this is so that we could communicate directly with him.

Peter Spencer commented that there would always be people who would try to exploit the system. The problem was how to stop the unintended consequences. The system seems to be too heavy handed to protect the really vulnerable. He raised the question of employment. Some employers were very good and would allow workers, particularly those in IT, to work from home at times that best suited them. This was most popular with people with CFS/ME. He suggested that the government should focus on employers’ obligations and the need to preserve workers’ skills. He gave De Loits as an example of a good employer. Dr Bolton said it was a question of deciding whether employers should be persuaded or compelled to support their staff. He preferred the former means. In cases of compulsion, as with the Disability Discrimination Act, some employers would look just at the minimum they must do whereas if there were incentives the outcome was generally better.

Sue Waddle made the point that, to her as a magistrate, it seemed unreasonable that some young people with long-term conditions such as ADHD seemed to be able to obtain and remain on DLA and carer’s allowance when they were before her for serious offences when other youngsters, very sick with ME/CFS and who are exemplary members of society had great difficulty in getting any assistance. She asked whether there was an automatic entitlement to benefits for ADHD. Dr Bolton pointed out that benefits were available to a wide range of people and he could not comment in this case. He said the only automatic entitlement was for terminal illnesses.

Charles Shepherd asked about the timetable for the changeover from incapacity benefit to the new system. Dr Bolton said it involved a very large number of people and the migration to ESA and JSA would start next year and was expected to take about 3 years. The order in which cases were dealt with would be determined by Ministers.

Christine Harrison asked about the 13 week assessment period. She made the point that, in many cases, this was too short a timescale for getting a confirmed diagnosis and asked whether the DWP were making a judgement too soon. Dr Bolton pointed out that 2/3 of the applicants for ESA had already been away from work for 6 months. There were a few applicants who had been unemployed who did not have the 6 months lead time. Early intervention was very important as it would mean that the claimant would get back to work sooner. He again stated that the DWP were not looking at a diagnosis. They were looking at functional capacity.

Christine Harrison remarked that some GP’s did not believe in the illness and were unsupportive. She explained that the CFS/ME community had worked hard together to prepare a document for medical guidance for other benefits which had then been amended so that they lost their import. Charles Shepherd asked whether new guidance had been produced for ESA. Dr Bolton explained that it was a carry-over from incapacity benefits medicals. The Chairman stressed that it was essential that medical assessments were accurate. She pointed out that appeals were costly, both to the claimant and the taxpayer and the necessity for them should be avoided.

Christine Harrison made the point that carers felt ignored and abandoned. They worked 24/7 for a pittance; they had lost their careers; they had no pension rights, and were unable to provide for themselves. Most do the work willingly, but carers must be listened to.

The Chairman thanked Dr Bolton for answering questions and offering advice so freely. She quoted from Sardar – 1999:

“Sickness is no longer simply a personal matter; it has become social, political; bureaucratic —-. When is someone sick? Who decides? By what criteria and procedures? The only thing that is certain is that the patient has little power and cannot answer any of these questions. You are only ill when someone says you are ill.”

Dr Bolton responded by saying that the meeting had been very useful. He would contact his colleague about permitted work and Dr Jane Rayner.

If new medical guidance was to be produced, the CFS/ME representatives would be consulted.

The review would need a significant body of evidence for change.

Any fundamental problems would be addressed.

The evidence must be representative. The number of appeals and the number that were successful were a part of this.

Complaints about ATOS should be sent to the ATOS customer centre through local CABx if necessary.

4. Minutes of the meeting of 8 July 2009

The minutes of the meeting of 8 July 2009 were agreed and signed by the Chairman.

5. Matters arising

i) Bill Kent asked about the reference to ‘evidence base’ in the presentation by Dr Crawley. He wondered whether this should be ‘evidence based approach’. The Chairman stated she had confirmed the wording with Dr Crawley.

ii) The Group recognised that there are considerable variations in the experiences of Lightning Process reported by patients and that there was a great deal of controversy. There was a need for Phil Parker to produce clear scientific evidence to demonstrate the safety and efficacy of this treatment in a form that would enable other researchers to test and attempt to replicate the findings. This must include a definitive characterisation of the patients from whom the evidence is gathered.

iii) There was a mass of information gathered as evidence for the APPG for ME Inquiry into NHS Provision. The time scale meant that there would only be an executive summary and recommendations ready for the APPG meeting on 2 December 2009. The full report would be compiled at a later date.

iv) Charles Shepherd had circulated brief notes about the November workshop. Comprehensive summaries would be available on the MRC website. Key research projects had been identified and there were real indications from Professor Holgate of support from the MRC for a variety of different proposals some of which were not direct research – funding for PhD students, for example. Christine Harrison asked whether there were any experts in neuroimaging. Charles Shepherd said the key findings had been covered by a speaker who was not a neuroradiologist.

Peter Spencer said that remarks had been made about the aggressive nature of some of the correspondence together with the number of freedom of information requests from a few members of the ME/CFS community was taking up to 80% of one person’s time at the MRC. It was felt that this was unhelpful as the time could better used for constructive purposes. There was a danger that the hostility to the MRC would be used as ammunition against proposals for research for ME/CFS in what was an extremely competitive field. This was the best opportunity for research support for 10 years and the CFS/ME community should not let it slip through their hands. It was important to get new talent and new technology into the field. It was recognised that the heterogeneity of the disease made it hard to produce proposals.

There was an interest in setting up tissue banks, though there is a degree of scepticism about the value of this project.

There would be another meeting of the expert group in the New Year.

v) As there was no response to letters from the Chairman to Invest in ME about their continued membership, it was decided that the Group would remain as it is unless a name came to the attention of the Group. The Chairman said she had written to the CFS Research Foundation to invite them to join Forward-ME, but she had received no response. It was suggested that they never went to meetings and it was likely that the response would be negative.

6. Welfare Reform Bill

The Welfare Reform Bill was now an Act. Members of the House of Lords had won a number of concessions from the government, but there was still a degree of scepticism about some of the assurances given, particularly in so far as those with fluctuating conditions was concerned.

7. Current research

There are several groups in the UK who are trying to replicate results from the XMRV virus findings in the USA. There are still concerns about the consistency of samples and laboratory tests, but some interesting results are expected. Several people had asked about testing for XMRV. It was considered that blood tests would not be helpful at this stage as they were expensive; several different tests may be required; there was no standard testing protocol for laboratories, and results would not, at this stage, be helpful either for diagnosis or management of CFS/ME.

Sue Waddle said the MERUK would have some interesting research results published within the next few weeks, but she was not in a position to tell us about them at this meeting. MERUK’s Dr Abbott would correspond directly with CCRNC about the National Outcomes.

The first phase for the tissue bank feasibility study had been completed. The second phase, funded by MEA and AfME, will start in January 2010 and they were looking for a suitable place where there was an association with CFS/ME to place a tissue bank.

8. Any other business

There was a constant stream of questions about membership of CCRNC. It was recommended that all questioners should wait for further developments, as there were expected to be some changes in the spring.

Christine Harrison asked about whether swine flu vaccinations were advisable for people with ME/CFS. The evidence was mixed and Charles Shepherd pointed out that the MEA were publishing feedback on how people with ME/CFS were reacting to the vaccine on their website. It was for the patient and their GP to decide.

9. Date of next meeting

To be advised