Minutes of the meeting held on

Wednesday 26 January 2011

 2.30 PM

HOUSE OF LORDS.

 

 

1. Present:

Margaret Mar – Chairman

Christine Harrison – BRAME

                        Bill Kent ReMEmber

                        Charles Shepherd – MEA

                        Mary-Jane Willows – AYME

   Apologies:

                         Tanya Harrison – BRAME

Jane Colby – TYMES Trust

Janice Kent – ReMEmber

Peter Spencer – Action for M.E.

Sue Waddle – MERUK

                   

2.     Presentation by Dr Jane Rayner, Chief Medical Member of social security tribunals including questions and answers

Dr Rayner spoke to the Group on three points:

                                    a) Introduction to the social security tribunal service

                                    b) Background of the service

                                    c) The importance of appealing

 

She told the Group that the tribunal service was part of the court service, was neutral and was independent of the Department for Work and Pensions (DWP). As 50% of decisions were overturned, she felt it would be helpful to ascertain why people were deterred from appealing.

 Dr Rayner was the first Chief Medical Member. Her clinical background was in diabetology and endocrinology. She had a special interest in chronic diseases, adolescents and ethnic minorities.

Dr Rayner was employed to set up and oversee an appraisal and training system for all the medical members who sit on social security tribunals.  Doctors in the Social Entitlement Chamber now have 3-yearly appraisals with a doctor and a judge.

When asked what training was given on difficult conditions such as M.E. Dr Rayner explained that once a year doctors in the chamber were given a self-appraisal questionnaire and asked to identify any training needs. Dr Rayner then devised training taking those needs into account. This year, for example, they were looking at chronic fatigue syndrome and chronic pain.

She was asked whether it was possible for doctors in the chamber to specialise. Dr Rayner said that this was not necessary, as cases were not listed by diagnosis. Assessments were made on the basis of functional loss rather than diagnosis. However, she encouraged doctors to do background research if they were presented with a case involving a diagnosis with which they were not familiar.

 Dr Rayner confirmed that the service was given feedback on complaints and that they were taken seriously.

It was observed that, because many doctors are ambivalent about the genuineness of ME and reports had been received of panel members exhibiting this ambivalence at tribunals, many claimants did not appeal. Some people with ME did not have the energy to appeal or to complain. An example of documentation that did not reflect the truth, and a description of one lady who contemplated suicide as a result of her fear of losing benefits were given. There seemed to be two extremes of experiences of the tribunal service. Some people reported very positive experiences whilst others were treated badly and complained of disparaging remarks made by tribunal doctors.

Dr Rayner was asked whether doctors should express their reservations about the validity of a diagnosis of ME. She said that she could not comment on DWP doctors, as they belong to a separate organisation, however she would take reports of tribunal doctors making disparaging remarks very seriously.

When asked about the complaints procedure, Dr Rayner said that the claimant should write to the regional judge. There was a robust complaints procedure. In many regions the hearings were recorded so that they could be referred to. She was unsure whether it was also possible to complain via the website. (See attached for a list or Regional Judges’ addresses).

Dr Rayner said that she had met Professor Malcolm Harrington and she had told him that sometimes, when she read a report, she had an image of an individual in her mind but when they appeared before her the person bore no resemblance to the person portrayed in the report and that it was as if the report had been written about somebody completely different. She had also encountered cases where examining doctors had insisted that the claimant sign their medical report without having been allowed to see it

After being told that most people with chronic conditions want to concentrate on the things they are able to do and found it very hard to describe what they could not do, some of which they found embarrassing to describe, Dr Rayner said that people must leave the tribunals procedure with their dignity intact. They were exercising their right to an appeal and the tribunals system should act as a safety net for those who have been incorrectly assessed.

Dr Rayner was asked whether the system was coping with its current workload, and whether it would cope in the future as claimants were migrated from incapacity benefit to employment and support allowance (ESA). Dr Rayner replied they were not currently coping which was why they have just appointed 200 new doctors. Their workload had increased. They used to work at 250,000 appeals a year. That had now risen to 500,000 appeals a year following the introduction of ESA.

Charles Shepherd explained that he was a member of the working group appointed to look at the descriptors for fluctuating conditions, being overseen by Professor Malcolm Harrington. Dr Rayner said that she was concerned about the internal review of descriptors. Having looked at the proposals for the new descriptors, she wondered who would qualify for ESA. The importance of evaluating not just whether someone could perform an activity, but whether they could sustain this level of activity over time was stressed. The importance of getting decisions right in the first instance in order to reduce the number of appeals and to save money was also stressed.

Dr Rayner referred to the chamber’s president’s report, which stated that the most common reason for overturning a decision is additional evidence: most commonly verbal evidence from the claimant.

When asked whether there were any specific concerns about Atos reports Dr Rayner said not, although they did struggle with the standard of some of the medical reports. Some of the recorded information was untrue and claimants denied making some statements.

It was agreed that, when people complained, they often did it in the hope that it would prevent the same thing happening to someone else. It would be an incentive to people to report problems if they felt that they could influence the process.

When asked whether feedback forums could be held between members of the chamber and patient groups, Dr Rayner said that it would be difficult to maintain judicial independence. Doctors were bound by the rules laid down by Parliament and could not use clinical judgement. The DWP had complained that the tribunal service had become part of the benefits culture and needed to be reminded that work is actually beneficial to most people. Her personal view was that it would be helpful for doctors in the Chamber to be allowed to exercise clinical judgement.

The Chairman thanked Dr Rayner for speaking to the Group.

3.    Minutes of the last meeting

The minutes of the meeting of 26th October 2010 were agreed and signed by the Chair.

4.     Matters Arising

BK asked where he could find a copy of Professor Harrington’s report.

Action: CS will order several hard copies of the report to distribute among the Group.

BK asked whether there was any news on the review of the NICE guidelines for M.E./CFS. CS said that NICE have said that they will consider a review once the results of the PACE trial are published.

5.     DWP working group on fluctuating illnesses

CS read out the key points from a briefing letter which he had received from Professor Malcolm Harrington, along with a report from a review of mental health descriptors giving some ideas on approach.

TR asked how the process would align with the internal review recommendations which had caused considerable dissatisfaction amongst disability organisations. C.S. advised that this is explained in the letter.

Action: CS to feedback to Forward M.E. once he has attended the initial meeting of the working group.

The Group thanked CS for taking this piece of work on.  

6.     Current Research

CS advised the Group that a decision is still being awaited on ring fenced funding for M.E. research by the Medical Research Council.

* Addendum:

On Thursday 27 January 2011 the Medical Research Council (MRC) announced that it was committing £1.5m for research into the causes of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME).

CH asked whether anyone will pick up the work of Jonathan Kerr. CS said he thought not – certainly in the UK in the current situation, although gene expression research was continuing elsewhere. It was made clear the Dr Kerr ‘s last grant from the CFS Research Foundation ran out in July 2010 and that he had not applied for further funding. It was understood that he wished to return to clinical work.

CS tabled a paper on an appraisal of cognitive behavioural therapy and graded exercise therapy in Spain. Regarding Xenotrophic Murine Retrovirus, CS told the Group that since the last meeting, several papers had been published in the December issue of the journal Retrovirology  hypothesizing that the positive XMRV results in samples from the piece of research done by the Whittemore Peterson Institute were the result of laboratory or other contamination.

The Chairman talked the Group through a paper which she had circulated prior to the meeting and had found interesting. The paper reported statistics from the M.E./CFS service in Newcastle that 40% of people referred to this service do not have M.E./CFS.

MJW told the Group that the report presents typical figures. She would like to draw the Group’s attention to the fact that all specialist services are now under threat, and that the Group would do a disservice to the people who rely on those services if they did not defend those services. She would like to propose this as an agenda item for the next meeting. BK seconded the view.

The Chairman advised that she would also like the Group to look at the number of people with M.E. sectioned under the Mental Capacity Act at the next meeting.

Action: MJW to contact the British Association of CFS/ME (BACME) to get a list of all specialist M.E. services under threat.

CH asked that GP consortia were also added to the next agenda.

7.     Any other business

CS asked about the Chairman’s recent parliamentary question relating to information held in the public records on Myalgic Encephalomyelitis and Chronic Fatigue Syndrome, which also led to a further question. 

8.     Date of next meeting

Tuesday 1 March 2011

 

Region

Regional Tribunal Judge

Address

Central Region

Judge Jessica Burns

Birmingham SSCSA Tribunals,

3rd Floor, Auchinleck House, Broad Street, Birmingham, B15 1DL

Wales & South West

Judge Jim Wood

Cardiff SSCSA Tribunals, Eastgate House, 35-34 Newport Road, Cardiff, CE24 0YP

 

Scotland

Judge Ken Kirkwood

Glasgow SSCSA Tribunals, Wellington House, 134-136 Wellington Street, Glasgow, G2 2XL

 

North-West

 

Liverpool SSCSA Tribunals,

36 Dale Street, Liverpool, L2 5UZ

North-East

Judge David Wall

Leeds SSCSA Tribunals, York House, York Place, Leeds, LS1 2ED

 

 

Eastern

Judge Pauline Gray

Nottingham SSCSA Tribunals, The Pearson Building, 57 Upper Parliament Street, Nottingham, NG1 6AZ

 

South-East

Judge Jeremy Bennett

Sutton SSCSA Tribunals, Copthall House, 9 The Pavement, Grove Road, Sutton, SM1 1DA

 

Please note that we are currently without a Regional Tribunal Judge (RTJ) in our North-West Region. The District Tribunal Judges are currently covering the RTJ duties until a successor is appointed. Any judicial complaints to this region should be marked for the attention of ‘The Regional Tribunal Judge’.

E-MAIL

 

To:                   Bill Kent – ReMEmber

                        Mary-Jane Willows – AYME

                        Jane Colby – TYMES Trust

                        Janice Kent – ReMEmber

                        Peter Spencer – Action for ME

                        Sue Waddle – MERUK

 

From:               Anne Faulkner

Date:               14th February 2011

 

Subject:           CFS Research Foundation – Genomic Research       

 

 

 

Dear

 

When reading the minutes of the meeting of Forward ME which took place on the 26th January 2011, I noticed that when Christine Harrison asked whether anyone was going to pick up the work of Dr Jonathan Kerr, Dr Charles Shepherd said he thought not, however this was not correct.  Our genomic research has followed a carefully designed plan and it will continue although Dr Kerr has returned to clinical work.

 

A grant has been made to Professor Paul Kellam, Virus Genomics Team Leader at the Wellcome Trust Sanger Institute, Cambridge and Professor of Viral Pathogenesis at UCL Department of Infection, who will be working with Dr Tim Harrison, Reader in Molecular Virology at UCL Medical School, and Dr Dan Frampton, Research Fellow at UCL Department of Infection to cover the costs of the latest study “Meta analysis of gene expression data to discover diagnostic and mechanistic signatures in the peripheral blood of CFS patients”. 

 

As long as funding allows we shall be continuing to fund genomic research into the future.  I feel it is important that this is noted as our research is a great comfort to sufferers, their families and their carers as it brings hope of an eventual cure.

 

With best wishes

Yours sincerely

 

Anne Faulkner

Hon Director

CFS Research Foundation

2 The Briars

Sarratt

WD3 6AU

 

01923 268641