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 |
3rd Floor, Auchinleck House, |
|
|
Judge Jim Wood |
|
|
|
Judge Ken Kirkwood |
|
|
North-West |
|
|
|
North-East |
Judge David Wall |
Leeds SSCSA Tribunals,
|
|
Eastern |
Judge Pauline Gray |
Nottingham SSCSA Tribunals, The |
|
South-East |
Judge Jeremy Bennett |
Sutton SSCSA Tribunals, Copthall House, 9 The Pavement, |
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