FORWARD – ME
Minutes of the meeting held
on Tuesday 21 April 2009
at
The House of Lords
1.
Present:
Tanya and Christine
Harrison – BRAME
Bill and Janice Kent – ReMEmber
Sue Waddle – MERUK
Jane Colby – TYMES Trust
Mary-Jane Willows – AYME
Charles Shepherd – MEA
Margaret Mar – Chairman
2.
Apologies:
Peter Spencer – AfME
Kathleen McCall - InvestinME
3.
Minutes of Meeting held on
18 November 2008.
The
minutes of the previous meeting were agreed and signed by the Chairman.
4.
Ms Dianne Burns RGN; MSC;
BSs(Hons) Nurse Practitioner.
The
Chairman welcomed Ms Burns to the meeting. She had been asked to address
the Group following a survey of nurses which highlighted the lack of
knowledge and, in some cases, empathy with PwME.
Ms
Burns said that the Royal College of Nursing was deeply disturbed by the
survey results and its impact upon patient respect. The matter had
already been raised with the RCN by their former President, Dame Betty
Kershaw, who is Professor of Nursing and Midwifery and Dean of the
The
RCN was in a good position to lobby for improvements in patient care,
with more than 400,000 members. They have a wide variety of mechanisms
to communicate with members and a wide range of educational facilities
and resources available including journals and websites, local meetings
and a learning zone. They have representatives on Boards and Government
committees. There were not enough nurses with awareness and
understanding of ME/CFS. However, the RCN was committed to nurse
education and to exploring all the options.
She
told the Group of a fringe event to be held at the RCN Congress on 12
May 2009 which would be attended by MEA.
In
response to questions:
Ms
Burns acknowledged that the training and education of Practice Nurses
could be a problem as they were often employed by GP’s to cover specific
tasks which attracted remuneration from the DoH (e.g. respiratory
disease, coronary heart disease and diabetes). It should be possible to
raise their awareness of available services. She agreed that specialist
nurses for ME/CFS were necessary.
The
RCN have no role within CNCC at present.
The
lack of nurses’ understanding of ME/ME patients’ needs was discussed. A
major problem was the disbelief of the medical profession.
Pre-registration training was very broad brush, but there were
possibilities that post-registration courses would provide opportunities
to change the lives of people with chronic medical conditions. Patients
and support groups could help with training. It was suggested that
Forward-ME could put together an education package and offer to provide
speakers.
It was
pointed out that the Nursing and Midwifery Council set the objectives
that nurses needed to meet in order to qualify (NMC domains or
competencies). They also validate all pre-registration courses. There is
no requirement at the moment for any course to include a focus on
ME/CFS. The Nursing and Midwifery Council would need to target the
schools if they wanted ME/CFS to be included.
It was
suggested that Ms Burns might work with Dr Kirstie Haywood at the
Ms
Burns saw huge changes coming in nursing practice including prescribing
and diagnosing need for admission to acute care. Attitudes were
beginning to change with training. She offered to let the Chairman know
of a possible speaker from the Nursing and Midwifery Council.
The
Chairman thanked Ms Burns for her enlightening talk and hoped that the
Group could keep in touch with her.
5.
Matters Arising from
Minutes.
The
Forward-ME website was up and working. The Chairman expressed thanks to
Alan Rengger for his hard work.
6.
Withdrawal of 25% ME Group
The
Chairman read a letter from the Chairman of the 25% ME Group in which he
explained his reasons for withdrawing from Forward-ME. The Chairman had
reluctantly accepted his withdrawal. She explained that it was not her
intention to change the original philosophy of Forward-ME and hoped that
the remaining members would continue to work together to achieve their
purpose.
7.
NICE
The
Chairman explained that JR looked only at points of law. From reading
the judgement it was clear that the Judge had found that NICE had acted
within the law.
There
was a question as to when the NICE guidelines on ME/CFS were to be
reviewed. The Chairman agreed to table a written question to ascertain
the date. (Written Answer 5 May 2009: “The National Institute for Health
and Clinical Excellence will consider in August 2010 whether there is a
need to review its clinical guideline on Chronic fatigue
Syndrome/myalgic encephalomyelitis”.)
BRAME
highlighted that one of the failings of the NICE Guidelines was
that the scope was too narrow. MEA would be
looking for factual inaccuracy as a means of getting change. Their
reliance on CBT/GET was highlighted by the way in which the Association
of British Insurers had interpreted the Guidelines as treating ME/CFS as
a mental illness. MEA had met with them to try to get them to change
their view. The Chairman had raised the matter in debate and had written
to Lord Darzi, Minister for Health.
There
was discussion on PCT’s adherence to Guidelines and comparison between
the NICE Guidelines and the clinical guidance about to be issued by the
Scottish Health Department which were based on the Canadian Guidelines
and the MEA Purple Book.
8.
Research
AfME
and MEA had attended meetings of the MRC expert group which had met
twice under the Chairmanship of Professor Stephen Holgate. The first set
out the terms of reference and membership. At the second meeting
proposals for a two day conference and workshop to be held in November
with 50 – 60 people to include a keynote speaker and short presentations
from a range of experts in the biomedical areas of ME/CFS. Focus would
be on young researchers with new ideas. These would be followed by
discussion groups and plenary workshops with concentration on hard
science.
They
would also arrange for an academic review of all of the literature on
ME/CFS. The object was to produce reliable, consistent and robust
research findings.
MERGE
had a number of ongoing research
projects with results imminent. It was difficult for the
researchers, who were doing regular jobs as well as research, to find
time to write up their results for publication, but this would be done.
They were eager to be included with the MRC Expert Group conference.
MEA
will shortly be visiting the Medical Research Council Brain Banks in
9.
Welfare Reforms
The
latest Welfare Reform Bill was to have its Second Reading in the House
of Lords on 29 April. The Chairman asked for any matters that the Group
would like to have included to be forwarded to her. Some discussion
followed.
10. APPG Inquiry
There
would be a very tight timetable. It was understood that questionnaires
be distributed to MP’s and Peers to send to their constituents who have
contacted them over the past 3 years. There were doubts that the
timetable would be achievable.
11. Any Other Business
The
Worcestershire Group’s submission on CNCC’s was discussed. The
participation of AfME and AYME in the forthcoming conference of the
ME/CFS Clinical Network and Research Collaborative was called into
question. The point was made by AYME that taking part in a conference
did not automatically mean they agreed with all the views of all the
participants and that it could often be beneficial to work on the inside
and to gain the co-operation and understanding of those whose views were
opposed by getting to know them and gaining their confidence.
Mentioning that the approach taken by AfME and AyME did not seem to be
bearing fruit, Tymes Trust reminded the group of an observation made by
Terry Waite: “it doesn’t mean that if you oppose what someone is doing
that you’re necessarily against them in totality.”
It was
agreed that the Chairman would invite a speaker from the CNCC to discuss
the Group’s concerns at a later date.
The
Group had received a suggestion from Derek Pheby that the
ReMEmber stated they had experienced difficulties when trying to take up
patients’ concerns with the Department of Health. It was agreed that a
Minister should be asked to attend a meeting of Forward-ME.
12.
Date of Next Meeting
To be
advised.
The
meeting closed at 3.55pm.