FORWARD-ME
Minutes of the Meeting held in the Television Interview Room
House of Lords
Wednesday 25 June 2014, 2pm
Present:
Countess of Mar (Chairman)
Dr Charles Shepherd (MEA)
Sonya Chowdhury (AFME)
Janice Kent (reMEmber)
Bill Kent (reMEmber)
Sue Waddle (ME Research UK)
Christine Harrison (BRAME)
Dr Paul Worthley (ME Trust)
Hannah Clifton (ME Trust)
1.
Apologies
had been received from Mary Jane Willows and Jane Colby.
2.
Professor Mark Baker, NICE
2.1 The Chairman
introduced Prof Baker who explained he had been in post for about two
years. The Professor said he would start with an explanation of the
process by which subjects come before NICE. Originally they had just
responded to whoever wanted guidance. Then around 2005-6 a formal
process of topic selection, with specialist panels, was set up. That
process was changed around the end of 2010 when the man political
parties preferred “standards” to guidelines in the NHS. In March 2012 a
Library of Quality Standards Topics was established; it included a
number of NICE guidelines but ME/CFS was not among them and he did not
know why. It was not feasible to update or change guidelines not in the
Library until at least 2017. The Library was now the responsibility of
NHS England, not of the Department of Health.
2.2 Turning to the ME/CFS Guideline specifically, the Professor said
that it did not meet our needs and it did not meet theirs (NICE’s)
either. The pressure for guidance started in about 2002 when the then
CMO, Sir Liam Donaldson, wanted the subject “put to bed” in the form of
advice to doctors that ME/CFS was a real illness and what they should do
about it. It did serve a purpose because it was the only bit of guidance
in the NHS on ME/CFS, but it was limited in its scope. It was designed
to get patients seen and helped, but it assumed there were specialists
who knew what to do – and there were not.
2.3The Guideline
had been reviewed twice, but not much change had been observed, and when
it was last looked at in 2013 it was decided to put it on the static
list. Subjects on the static list were still reviewed, but only every
five years compared with every two years for those on the active list.
If anything important were to come up up in the way of evidence it could
be taken off the static list. Prof Baker said he sympathised with our
position. The Guideline was not comprehensive guidance and it did not
promote innovation. It referred to only “passive” interventions such as
CBT and Graded Exercise. There was not much of an evidence base to go
on, and in NICE it was evidence that drove guidance.
2.4 In summary,
Professor Baker said:
·
He sympathised with
the position we were in with the Guideline
·
The Guideline failed
to address the real issues in ME/CFS
·
It does not promote
innovation
·
It had a
disappointing impact on specialist care and commissioning issues.
3.
Questions
3.1
The Chairman referred to people being given an incorrect diagnosis of
ME/CFS. In the North-West of England for example such people had been
found in fact to have 15 other conditions, and Jill Mizen had asked
about the treatment of patients with “red flag” conditions. How could
this be brought to the attention of GPs? Prof Baker said that the
pendulum appeared to have swung from under-diagnosis to over-diagnosis,
with some very serious conditions being misdiagnosed as ME/CFS. The
Chairman agreed and mentioned Addison’s Disease and Pituitary Tumour as
examples of this misdiagnosis. Prof Baker listed several conditions for
which some guidance was to be developed including medically unexplained
symptoms and persistent pain (as in fibromyalgia).
3.2
The Chairman then turned to the provision in NICE that people with
ME/CFS have the right to refuse or withdraw from any aspect of their
care plan. Suppose Social Services wanted to take a child with ME into
care. What force had the NICE Guideline in law? The Professor said that
a judge had ruled that you can’t ignore NICE Guidance just because you
don’t agree with it. You must have carried out a robust review of the
case in question. This, he said, seems to give NICE Guidance rather more
force than was originally intended. He would try to find the case
reference for the Chairman.
3.3
Sue Waddle asked about NICE’s position on the ICD classification. Did
they apply it to all cases? Prof Baker replied that they were not
necessarily tied by the ICD. In fact they did not normally start their
deliberations by saying “This is the definition of X”. Sue said that
what many of us were seeking was guidance which set out the seriousness
of the illness whilst still taking in the ICD provision. Prof Baker
commented that whenever he read responses to any consultation on this
subject his initial reaction was “We should stand this down”. But to
take it away completely would probably do more harm than good. Christine
Harrison added that during the development of the Guideline Tanya had
done her best to have the WHO classification included to address the
misunderstanding of ME and CFS.
3.4
Dr Charles Shepherd referred to
the high number of patients who were found to be suffering from
conditions other than the ME/CFS that had been originally diagnosed.
There ought to be guidance which would alert doctors to the possible
alternatives. He had brought an abstract of Prof Julia Newton’s paper
which showed that 40% of supposedly ME patients referred to a specialist
service were found to have other conditions. Other members supported
that proposal.
3.5
Janice Kent asked if there was some way in which, without review, a
passage could be put into the Guideline requiring all patients to be
diagnosed by a specialist ME doctor. Prof Baker replied that you
couldn’t “fiddle” with the Guideline! Following on from this Sonya
Chowdhury referred to a patient decision-making aid that had been
developed for stroke/atrial fibrillation. Could we work together on
something similar for ME/CFS? Prof Baker commented that the stroke/AF
aid was the first of its kind produced by a new body – the NICE
Implementation Collaborative. It was a possibility for ME/CFS. Sonya
said that AFME was prepared to put some resources into developing it as
it would directly build on work they had already started on a guide for
patients to use with GPs when they are diagnosed with ME or it is
suspected. Prof Baker said he would look into the possibility. Anyone
could develop a decision-making aid for patients and clinicians and they
might develop a method of accrediting decision-making aids.
3.6
Christine Harrison referred to the list of possible symptoms in the NICE
Guideline to consider ME/CFS which was being used erroneously as
“criteria” for ME/CFS by some East of England SHAs which were surveyed
in 2011, which was not appropriate. She asked whether NICE could put out
a statement to that effect. Professor Baker said that he was unable to
do that, but confirmed that there was no such thing as NICE criteria for
ME/CFS. Christine explained the work done by BRAME and other patient
representatives in Norfolk and Suffolk. She asked Professor Baker for
reassurance that, in all the work they had been doing, they had done
nothing wrong in not following the NICE Guideline if it addressed a
local need. He confirmed that this was correct and said that a guideline
is basically a tool to help professionals and patients – a
decision-making aid.
3.7
The Chairman asked Prof Baker if
he would take on board what Sonya had suggested. Prof Baker agreed and
said that we needed something to steer patients away from “dangerous
neglect” and towards expert diagnosis and treatment. Dr Charles Shepherd
and the Chairman asked who we might speak to about this at NHS England.
Prof Baker suggested Martin McShane. Sonya Chowdhury said she was
prepared to take this project forward. Janice Kent said we would need
names other than charities to promote it. Prof Baker suggested the Royal
College of General Practitioners.
3.8
The Chairman wondered whether we might approach the Chief Medical
Officer. Janice Kent suggested Duncan Selbie at Public Health England.
Prof Baker commented that the CMO retains a lot of clout. He was
not sure what interest Public Health England might have, but we could
try.
3.9
The Chairman thanked Professor Baker for being so helpful and candid.
4
and 5. Minutes of last meeting (10 June 2014) and matters arising.
The minutes had only recently been received. Members had until the
following week to comment on them.
6.
SEN Code (Special Educational Needs for children)
The Chairman had brought a copy (a very large document).
Jane Colby and Mary Jane Willows
had contributed to it.
7.
Recent action
The Chairman had e-mailed members a Parliamentary Question she had put,
and the answer. She asked Janice Kent to read out the details.
7.1
Janice said that several patients had contacted her because they had
asked their doctors for a referral, under the NHS, to a ME/CFS
specialist (Dr Amolak Bansal) but had been refused. This seemed to run
counter to the principle of Patient Choice, so she had requested the
Chairman to ask a PQ seeking confirmation of patient’s rights in this
area. In his reply Lord Howe had said that under the NHS Constitution
and the 2014-15 NHS Choice Framework, if a patient needs to see a
consultant or specialist for a physical or mental health condition, they
can choose the organisation that provides their NHS care and treatment
anywhere in England for their first outpatient appointment. They can
also choose which consultant-led team or which mental health team led by
a named health care professional will be in charge of their NHS care and
treatment for their first outpatient appointment.
7.2 The reply also contained provision for patients to complain if their
right of choice appeared to have been denied, but several members
pointed out that normally this should not be necessary; the NHS
Constitution and 2014-15 Choice Framework set out quite clearly what the
commissioners of services must do. However, Sue Waddle issued a note of
caution pointing out that the devil was in the detail; the answer
referred to “any …..health service provider with whom the CCG has a
commissioning contract for the service required as a result of the
referral….”. This was one more hurdle for patients to overcome. Bill
Kent said he was more optimistic. He believed that when they were hit
with this information the local NHS bodies would give patients the
choice to which they were entitled.
8.
DWP
8.1 The Chairman thanked Dr Charles Shepherd and, particularly,
Christine Harrison for the points to be put to the DWP about the new
guidelines on ME/CFS for ESA, WCA and DLA. Christine explained in some
detail her discussions with the Minister of State, Mike Penning MP. She
said that everyone agreed the guidelines were a mess,
8.2 Christine said there was a further meeting of the PIP ISF group on
17 June and gave an update on PIP. The Minister for Disabled People,
Mike Penning MO, had accepted her invitation to attend a PIP ISF meeting
to hear first-hand feedback on PIP and the PIP journey. This was
welcomed by the group. She had also given the Minister a personal copy
of the letter about the ESA, WCA and DLA. It was recognised that the
April launch of PIP had a number of problems, some of which had been
addressed.
8.3 Christine stressed the importance of supporting medical evidence
copies of which should be sent with Part 2 if possible. She also
reminded us to remind clients/members to ask for a personal password as
an added security measure when contacted to ensure that it was the DWP
asking for personal details.
8.4 The latest statistics on PIP categorised conditions. Christine had
noted that sensory impairments were not included and she asked formally
where ME/CFS were placed. She was told that “CFS and ME would fall into
the Chronic Pain Syndrome sub-category which forms part of the
Musculoskeletal Disease (General) category.” She informed the DWP
Statistical Officer that ME and CFS were classified as neurological
diseases by WHO ICD 10 G93.3 and should be included in the neurological
disease group, not the musculoskeletal disease one.
8.5 The first DWP PIP Review
was launched on 23 June and would close on 5 September 2014. Christine
would be willing to feed points made by members into the review. The
link to the review:
https:www,gov.uk/government/consultations/personal-independence-payment-pip-assessment-first-independent-review.
She had expressed her concern that the proposed two independent reviews
would be insufficient as the process had been chaotic since the PIP
launch. This would be taken to the
Minister.
9.
Mental Health Act and Children Act
The Chairman referred to a letter
from Natalie Bolton. Sue
Waddle said she, Dr Charles Shepherd and Sonya had a plan. The problem
was that when Natalie had contacted them her information was anecdotal
and it was difficult to go forward on anecdote. Charles Shepherd said he
had spoken to Natalie on the phone but had still found it difficult to
get the full picture. Sonya said their plan was to devise an information
sheet for people with ME who were being threatened in this way – who you
could turn to, the legal position etc. They were also thinking of
collating information they received from patients with this problem.
Another idea was to provide information to mental health liaison workers
to make them aware ME is a physical illness, not a mental one. Charles
Shepherd said one of the problems as he understood it was that many
doctors regarded ME as a psychiatric condition and initiated action that
led to Section 47. He would like to know the legal position. He pointed
out that you could not compel a person with a physical illness to
receive treatment.
The Chairman explained that under the present Mental Health Act it was
necessary to prove mental incompetence and that patients were a danger
to themselves or others before they could be sectioned – in other words
the patient had to be incapable of making a decision for themselves. In
the case of children, Section 47 proceedings were taken when there was
concern about the welfare of the child. Patients threatened with such
action should get a good lawyer. She had referred several to Leigh Day
and Co. Dr Worthley also recommended Leigh Day and added that if you say
you will use a law firm those threatening Section 47 action will give in
. Members discussed aspects of this subject. Dr Shepherd said there was
useful information here that could go into the proposed information
sheet.
10.
Keith Geraghty
The Chairman stated that she had obtained more information from Mr
Geraghty and had tried to arrange an urgent meeting with Professor
Holgate in order to resolve the problem. Unfortunately, this was not
possible and she said that she would try again in October after the
parliamentary recess.
11.
Any other
business
Dr Shepherd announced that he would be meeting James Bolton of DWP the
following week to discuss ESA and WCA.
There being no further business
the meeting ended at 3.30pm