FORWARD-ME
Minutes of the meeting held in the Television Interview Room
House
of Lords
Thursday 22 June 2017 starting 10am
Present:
Countess of Mar (Chairman)
Dr
Charles Shepherd (ME Association)
Bill
Kent (reMEmber)
Janice Kent (reMEmber)
Tony
Crouch (representing 25% Group and TYMES)
Clare
Ogden (AFME)
Professor Kamila Hawthorne (Royal College of General Practitioners)
Fiona
Erasmus
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1.
Apologies
had been received from Sue Waddle (MERUK), Cath Ross (25% Group),
Christine Harrison (BRAME), Jane Colby (TYMES), Dr Paul Worthley (ME
Trust), Hannah Clifton (ME Trust), Gareth Tuckwell (ME Trust) and Sonya
Chowdhury (AFME)
2.
Presentation by RCGP.
2.1
The
Chairman introduced Professor Kamila Hawthorne and Fiona Erasmus.
They explained that they have
responsibility for the training and professional development of GPs. In
the last two years they have become involved in undergraduate education
as well as post-grad. They want to encourage doctors to become GPs. Prof
Hawthorne explained that she was in GP practice herself. It was a busy
practice which included a lot of homeless people.
2.2
Prof
Hawthorne then moved on to the subject of ME/CFS. The College recognised
it was a proper illness. Her own view was that it is an umbrella term
for a number of conditions. There is no diagnostic test, which causes
problems for patients and GPs. Both experience frustration because there
is no specific course of treatment. Prof Hawthorne said it was very
important that the doctor should listen carefully to the patient and
check out their medical history. They should discuss the patient’s
condition with them and agree a course of action with them. There is a
module on ME in the RCGP’s training programme which she recently checked
to see what service provision there might be around the country. This
revealed there are gaps in ME services – nothing in South Wales for
example where she lives. Dr Charles Shepherd added that there was now no
ME/CFS service at all in Wales; this was a disgrace.
2.3
Fiona Erasmus then introduced
herself. She had staff responsibility for the College’s examinations and
curriculum. She had been involved in GP education for a number of years.
She referred to the minutes of Forward-ME’s meeting with the GMC in
February which she had found very helpful. Regarding ME, their
curriculum is structured along the lines Prof Hawthorne had described –
listening to the patient, agreeing a course of action etc. ME/CFS is in
their curriculum and among the subjects that can be included in their
examinations. She explained in some detail the different methods
(multiple choice questions, role play etc) that can be used in the
exams.
3.
Discussion and Questions
3.1
The
Chairman pointed out that there may be as many as 250,000 people with
ME, possibly 60,000 of whom are housebound or even bedbound and many of
them never see a GP because domiciliary visits are no longer made. There
are knock on effects from this. It means that arrangements are not made
for a physiotherapist because a doctor has to initiate that. They have
problems getting the correct social security benefits because they
cannot get the certification they need from a doctor. What could be done
about this?
3.2
Professor Hawthorne explained
that home visits, if requested, used to be obligatory but that resulted
in a lot of unnecessary visits. Now, if a home visit is requested the GP
should first make a phone call to determine whether a visit is really
necessary or whether the problem can be dealt with over the phone. If it
is decided that a home visit is needed then it should be made. She
confirmed this could apply to a patient bedbound with ME.
3.3
Tony Crouch asked whether a
person who had been ill for years could be visited at regular intervals.
Prof Hawthorne confirmed this could be arranged; the frequency or
regularity of visits would depend on the particular circumstances of the
patient.
3.4
The Chairman referred to the
problem of co-morbidities. Once a person had the ME “label” the
possibility of co-existing conditions was frequently overlooked. She
mentioned the case of a person with ME who had collapsed in the street
and who, on admission to hospital, was found to be diabetic. She had
been reporting symptoms for some time but had been ignored because of
her ME. Prof Hawthorne said this was a common problem, and not just with
ME. There is a tendency by doctors to attribute all symptoms to the
original diagnosis. The College urges doctors to consider all
possibilities.
3.5
Dr Charles Shepherd added that
with ME patients a number of “ologies” can be involved. Because of the
wide range of a symptoms a patient may be referred to a rheumatologist
or a neurologist or specialists in other areas. The danger is the
specialist may overlook the possibility of a condition that is not in
their particular field. For
example irritable bowel syndrome can be a symptom of ME but it could
also be a red flag for other serious bowel conditions including cancer.
He pointed out that certainly in the past GPs have received no training
about ME and it was even
referred to as an hysterical condition when he was at medical school.
Things may have improved somewhat, but in a website poll (2016) 46% of
MEA members said their doctors had poor knowledge – or indeed no
knowledge - of the condition. Early and accurate diagnosis was
essential, but this was not happening. Education must improve in this
area.
3.6
Fiona
Erasmus and Prof Hawthorne explained that training in this area was
given but clearly it was not always acted upon in general practice.
Charles Shepherd asked if there was any way in which the Royal
College could make good this deficiency. Prof Hawthorne said there were
several possibilities; one way to improve knowledge would be for the
College to put a link on a blog (News and Views) which goes out weekly
to all RCGP members; the link could be supplied by Forward-ME.
3.7
Dr Charles Shepherd pointed out
the GPs have no directory of the NHS local CFS/ME services; that ought
to be rectified. The Chairman added that post-exertional malaise is now
the signal symptom. That should be made clear in the NICE Guidance which
is due to be considered for review. That would be a good opportunity for
the College to target GPs to improve their knowledge of the illness and
tell them where they can obtain help.
3.8
Tony Crouch pointed out that many
GPs still believe ME is a psycho-social condition. This leads to bad
outcomes – for example Graded Exercise for severely ill ME patients
which results in them becoming worse. It also results in children and
families being referred to social services because of interrupted school
attendance. Parents and children had been treated very badly because of
this. Prof Hawthorne and Fiona Erasmus said a formal complaint should be
made where appropriate, and patients and carers should be encouraged to
complain. The General Medical Council (GMC) makes a strong point that
they are there to safeguard the patients, not the medical profession.
3.9
The
Chairman said she could understand the frustration of GPs because their
role was to try to cure patients and there was no cure for ME. Prof
Hawthorne said some GPs were very good in spite of this and tried to
find ways to help these patients but others seemed to think that as
there is no cure there is nothing that can be done, or even that there
is nothing wrong with the patient. Again, that happens in other
specialties as well as ME.
3.10
Clare
Ogden said we recognised that GPs were incredibly busy. What could we in
the patient organisations do to help them? Prof Hawthorne agreed that a
good time for the College to put out new guidance would be when/if the NICE Guideline is revised, although Dr Shepherd pointed out
that any revision was unlikely to be put into effect before 2020. In the
meantime, Prof Hawthorne suggested, we should let them have a few lines
and a link for their blog. This would be subject to agreement with the
College and should be linked with a relevant news story as a ‘hook’,
such as key announcements from NICE. We could also contact Local Medical
Committees (one page of A4 if possible) setting out the local problems
for GPs and their ME patients and asking how we might help.
3.11
Dr
Charles Shepherd asked whether the College had any videos that GPs could
access that might be of help. Prof Hawthorne said they only had those
used in the training programme which were not really suitable. GPs often
referred patients to this
website – patient.doc.information.uk – but the information is not
produced by the RCGP. They also have a magazine GP Frontline which goes
out quarterly to all RCGP members. She suggested Forward-ME submit an
article for it. The Chairman suggested we all contribute to the article.
This was agreed. Another possibility was the RCGP Annual Conference
which she could arrange for Forward-ME to attend. It is held over two
and a half days in October. We could submit an abstract for next year’s
(in Glasgow) and we could perhaps have a workshop and stall.
3.12
The
Chairman asked about prescriptions. Sometimes ME patients had lengthy
prescriptions because of their many symptoms but the combination of
drugs sometimes made them feel worse. Prof Hawthorne said it was
important that doctors listen carefully to their patients and consider
the possible effects of various medicines taken together. She had
encountered patients who had acute sensitivity to drugs. The Chairman
also referred to studies done at Newcastle and Barts where it was found
that 40% of patients referred to them as having ME in fact had other
conditions. Early, accurate diagnosis was essential. Prof Hawthorne
agreed that empathy with the patient was extremely important.
3.13
The
Chairman thanked Prof Hawthorne and Fiona Erasmus for answering our
questions so fully and patiently, and asked that we keep in touch.
3.14
Tymes
Trust had submitted some written information and a question on the role
of GPs. The Chairman passed these to Professor Hawthorne and their
response will be transmitted to the Tymes Trust.
4.
Business Meeting
4.1
Tony Crouch referred to a meeting he had attended in Northern Ireland
where it had been agreed a letter about ME should go out to all GPs. He
would arrange for members to receive copies.
4.2
Minutes of meeting held on
14 March 2017
The
minutes were agreed as correct record.
5.
Matters arising
5.1
Isabelle Trowler (Chief Social Worker for
Children and Families in England). The Chairman said she had not yet
contacted Ms Trowler about CAMHS and cascading information to us, but
she would do so.
5.2
PACE. The Chairman commented that
this subject goes on and on! She was very concerned about a presentation
that had been given to the British Renal Society in which derogatory
remarks were made about ME patients. Should we complain to the GMC? Dr
Shepherd said we had only seen slides of the presentation, we did not
have the dialogue. The Chairman said she would think on what our
response might be.
5.3
Health Select CommitteeInquiry. Jeremy Quin MP had offered to take up
this matter. The Chairman asked Clare Ogden to let her have any
amendments. Clare agreed.
6
Any
other business
Charles Shepherd referred to a film “Unrest” about people with severe ME
and their problems. He thought it was well made but there was no medical
or scientific content from the UK that could be regarded as educational
if we are going to try to get politicians, doctors and medical students
interested in watching the film.