Thanks Island, very informative. I especially like recommendation #8.
welcome Lelvina- #8 is GREAT, as are most of them. #3 is quite a declaration of failure of the Chief Medical Officer (CMO) of 2002.
In fact, I think I'll post them. Do you know if this group has any power? Will anything happen? Will there be any follow-up & accountability? It seems almost too good to be true!
All-Party Parliamentary Group on ME
Inquiry into NHS Service Provision for ME/CFS
There were a significant number of submissions from PCTs stating that they do not
have accurate patient numbers. PCTs who do offer adequate services could only
supply numbers of how many people are using their particular service. There will also
be an unknown number of other sufferers within the community.
The Department of Health should undertake research to accurately determine
the numbers of patients with ME/CFS.
It is clear from the evidence that there are probably sufficient numbers of patients
involved and sufficient uncertainties about the nature and availability of services to
justify a measure in addition to the NICE Guidelines.
A national service framework should be created to complement the NICE
The APPG felt that many of the concerns and experiences submitted as evidence by
patients, carers and patient organisations would have been addressed had the
Independent Working Group Report to the Chief Medical Officer (CMO) of 2002 had
been acted upon adequately.
The DoH should revisit the report to the CMO and ensure that the
recommendations relating to service provision are adequately addressed and
are implemented promptly.
Currently, there appears to be a lack in consistency in treatment options offered to
patients in different PCTs. The Group has ascertained this from the evidence supplied
by PCTs and patients. The APPG finds the degree of variation in the availability and
access to services unacceptable. Patient evidence also indicates people want
services that are physician led, multidisciplinary, and are situated in locations that are
easily accessible to those with significant mobility problems.
The APPG recommend the DoH take steps to remedy the variation and ensure
that each PCT offers a full range of services promptly a process that should
involve meaningful consultation with local patients or patient support groups.
Through the evidence supplied to the Group, it is clear that there is a significant lack
of services available for children and adolescents. Many services only offer treatment
options to patients over 16, which has led to many children not receiving adequate
care. This is unacceptable and can lead to tragic consequences.
The APPG therefore call on PCTs, Strategic Health Authorities and the DoH to
undertake a detailed review of current services for children and adolescents to
ensure that all receive adequate care and that all decisions are made in
conjunction with personal carers, education authorities and social services
From correspondence with the Royal College of Physicians and the Royal College of
General Practitioners, the Group is not convinced that medical students receive
sufficient training on ME/CFS, including how to clinically assess and diagnose these
patients and advise on appropriate forms of management.
The Group recognises that ME/CFS does not have the same obvious impact as
cardiovascular disease or cancer, but that it is necessary for medical students
to receive adequate training in ME/CFS. The relevant Royal Colleges should
ensure that students receive training in this disease.
There were a large number of submissions from patients that stated their experience
with GPs was poor due to lack of awareness of the disease amongst primary care
GPs should receive ME/CFS awareness training as part of their continuing
professional development and ensure they are able to adequately recognise the
symptoms of ME/CFS and deliver a correct diagnosis. They should also be
aware of the various management pathways.
The Group noted evidence that there were serious concerns about acceptability,
efficacy and safety with some treatments such as cognitive behaviour therapy (CBT)
and graded exercise therapy (GET). This may be due to the lack of training given to
professionals but evidence was given that it was in part due to fixed attitudes about
causation by some health professionals. The Group feel that it is inadequate for
professionals to treat patients with ME/CFS when they have not been fully trained in
the particular characteristic of this disease.
It is essential that all healthcare professionals i.e. dieticians, nurses,
occupational therapists, physiotherapists and psychologists, involved in
treatment should have adequate training in ME/CFS and the relevant
professional bodies should ensure this occurs as a matter of real urgency.
NICE should carry out a detailed review of their management guidance on ME/
CFS, in particular the mounting evidence for the need to broaden the range of
appropriate therapies beyond CBT and GET, and to specify that all such
therapies should be delivered by specifically ME/CFS trained professionals.
To date research in the field of ME/CFS has produced little substantive progress but
there are a number of encouraging findings e.g. the XMRV research, which need to be
pursued. As noted in the Gibson report, there has also been far too much emphasis in
the past on psychological research and insufficient attention to biomedical research.
The Group welcomes the recent MRC initiative to attract new researchers and new
technologies in to this area.
However, the Group is sure that it is vital that further biomedical research is
undertaken to help discover a cause and more effective forms of management
for this disease.
It is clear from the evidence submitted to the Group that currently, ME/CFS patients
receive little assistance in the complicated process of application for benefits and that
refusal rates are worryingly high. Applying for benefits is an extremely prolonged and
strenuous task, especially if patients are forced to appeal the original decision where
their application was denied.
The Department of Work and Pensions should review its guidance to decision
makers to increase the awareness of the specific difficulties faced by ME/CFS
sufferers. Furthermore the Group recommends that ATOS Healthcare staff
should also receive increased training to ensure that they are fully aware of ME/
CFS and the limitations that it places on patients
The APPG is aware that many patients who are severely affected by this disease are
receiving either inadequate care or no NHS care at all, which is clearly inconsistent
with the NICE Guidelines.
Specialist referral services must ensure that high priority is given to the needs of
the severely affected, especially in relation to domiciliary services and in-patient
facilities for assessment and management.