14 May 2013
Held in the Television Interview Room, House of Lords, on 14th May 2013
Countess of Mar (Chairman)
Janice Kent (reMEmber)
Bill Kent (reMEmber)
Jane Colby (Tymes Trust)
Anita Williams (Tymes Trust)
Christine Harrison (Brame)
1. Apologies fromSonia Chowdhury, Dr Charles Shepherd, Mary-Jane Willows and Anne Faulkner.
2. Minutes of the last meeting (15 January 2013) were agreed to be a true record.
3. Matters Arising
The Chairman referred to Professor Harrington’s reference to Tribunal judges when he addressed Forward-ME. She had asked several Questions for Written Answer and, from the responses, it was apparent that the judicial process was not functioning quite as well as it should be.
On the education of sick children (item 5.1 of last meeting) Jane Colby said that schools and education authorities had no idea what they should be providing. She had been asked to give them information to help with this.
On the Lightning Process (item 5.2) the Chairman said that she had heard nothing further about the Smile project. Bill Kent said that it was scheduled to finish in July 2012 but nobody seemed to have heard what was happening. The Chairman asked for confirmation that the trial was not MRC funded; all agreed that it was not. The Chairman said that she would make some enquiries.
4.1 The Chairman referred to the paper submitted by Dr Shepherd. He had also sent a letter he received from Mencap. She asked for a précis of this to be provided for the minutes of this meeting.
4.2 Dr Paul Litchfield had been appointed in place of Professor Harrington. The Chairman said that she would invite Dr Litchfield to speak to Forward-ME
4.3 The Chairman asked for Dr Shepherd’s comments on the evidence-based review to be attached to the minutes.
4.4 PIP. A number of points of dissatisfaction were expressed by members. The Chairman said that she would take these up.
5.1 Launch of the Collaborative. The Chairman said that it had been good to see so many people involved. She was shocked to see that the Charter for the Collaborative contained a ‘gagging’ clause. There appeared to be some confusion between the desire on the part of a number of individuals to engage in honest scientific debate and the activities of a very small number of ‘activists’ which might be construed as offensive. Members expressed various concerns about aspects of the Collaborative. The Chairman said that these could be discussed with Professor Stephen Holgate at the July meeting. They could also ask him questions about the Charter and how the researchers would be vetted. She asked members to let her know of any questions they wanted to ask.
5.2 The Chairman announced that her formal complaint to the Press Complaints Commission about the Commentary to the PACE Trial reported in the Lancet had been accepted.
5.3 The Chairman said that the work on the Biobank was progressing well.
5.4 Janice Kent reported on a presentation given by Dr Amolak Bansal at reMEmember’s ME Awareness Week Conference. He looked carefully at the work done on Rituximab and had found that only those who had received chemotherapy had suffered ill effects. He would be publishing a paper on this subject in September. It was agreed that Forward-ME should invite Dr Bansal to speak to them after the paper had been published.
5.5 Jane Colby commented on the need for research to identify the true cause of ME which could be a virus in the intestine.
6. Endocrine Disorders
The Chairman asked for a letter from Jill Mizen be attached to the minutes.
7. Any other business
7.1 The Chairman said that she would be meeting Hannah Clifton of the ME Trust to discuss Burrswood to discuss nursing and respite care. She would consider inviting her to join Forward-ME.
7.2 Christine Harrison said that Healthwatch was not yet working properly. Patients’ voices were not being heard and, in a lot of places, Patients’ Reference Groups were not in place. The Chairman asked her to let her have a note about the problems.
7.3 Jane Colby read from a patient’s letter about a hospital’s attitude towards a child. The Chairman asked for written details so that she could consider taking the matter up with the appropriate Royal College.
8. Date of the next meeting
2 July 2013 with Professor Stephen Holgate as guest speaker.
Summary of documents received at the meeting
1. WCA Evidence Based Review (EBR) – sent in by Dr Charles Shepherd
(i) Fluctuating conditions group (FCG) and mental health group (MHG) working well together – meeting quite regularly, including a visit to DWP to meet Mark Hoban MP on April 30 to discuss benefit concerns
(ii) EBR Scrutiny Group is being chaired by Professor Malcolm Harrington
(iii) Dr Paul Litchfield – Chief Medical Officer at BT - appointed in his place. Will carry out 4th and 5th reviews of WCA. FCG and MHG asked for a meeting with him when we were with Mark Hoban. Possible invite to Forward ME?
(iv) EBR about to start in Atos examination centres in Manchester and Newcastle
(v) 1000 claimants with a wide variety of conditions will be assessed over the next few months – approx. 100 cases per week
(vi) Aim to include significant numbers from those represented by FCG and MHG – especially less common conditions like PD; Booster Groups
(vii) Participation is voluntary
(viii) Two assessments – first is the current WCA followed by the one produced by FCG and MHG
(ix) Fitness for work in these cases will be also be assessed by 30-40 Expert Panels consisting of doctors, occupational health experts, physiotherapists etc – nearest DWP can get to ‘Gold Standard’
(x) EP decisions will be quality assured by a smaller number of Quality Assurance Panels with condition specific expertise ME/CFS??
(xi) But ……..we have concerns about some of the information and guidance being given to the Expert Panels
Fitness to Work
(i) Positive: There has been movement in defining what constitutes fitness for work – must be able to work at least 16 hours per week and for majority of the time – which is based on JSA
(ii) Concern: about the way in which various ‘reasonable adjustments’ to work could be producing an over-optimistic decision on capability to work
(iii) Eg: Use of ‘Disability Leave’ which is good practice but not legally enforceable under to 2010 Equality Act, as well as working from home
(iv) Further concern: Not bringing in the ability to travel to/from work – still trying to get this inserted
(v) Aim is to publish interim report/results in August and recommendations in early 2014
2. Main points from a letter to James Bolton of DWP from the Fluctuating Conditions Group and Mental Health Group
(i) Representatives from the charities involved in the Evidence Based Review wrote to the Minister earlier this year expressing concern about aspects of the Employment and Support Allowance Amendment Regs 2012, in particular changes limiting a claimant’s ability to score against both mental function and physical function descriptors. The Minister suggested a meeting with J Bolton and other members of the WCA policy team.
(ii) The Minister also said that the amendment was aimed only at clarifying the original intention of the legislation and preventing some claimants inappropriately scoring against both sets of descriptors. He also stated there will be some situations where it will be appropriate to score against both (eg Parkinson’s Disease).
(iii) However, the position is still not clear to us. We are concerned that the Regs will not be interpreted consistently, and this could disadvantage some disabled people who should be scoring against both sets of descriptors. That’s why we are calling for a meeting.
3. Short synacthen test. Points from an e-mail sent by Jill Mizen to Professor Peter Trainer on 24 April
(i) NICE is currently preparing a clinical guideline and quality standards on adrenal dysfunction. They may overlook that the short synacthen test is only reliable for diagnosing primary hypoadrenalism, NOT secondary hypoadrenalism.
(ii) People have been wrongly diagnosed as having ME/CFS because a short synacthen test result of “normal” was wrongly interpreted as excluding hypopituitarism.
(iii) A substantial proportion of people diagnosed as having ME/CFS or Fibromyalgia may have undiagnosed hypopituitarism and may therefore have received inappropriate therapy.
(iv) Please prevail upon NICE to ensure this is clarified in their guideline.
Jill also asks for the following two questions to be displayed on as many websites and magazines as possible.
(i) How many people have had a short synacthen test with the results “out of range” and have been prescribed hydrocortisone?
(ii) How many people have had a short synacthen test with a “normal” result and have been left with no explanation for their problems except a diagnosis of ME/CFS?