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Parliamentary group slams NHS and Deptment for Work & Pensions re people with ME/CFS

Discussion in 'General ME/CFS News' started by leelaplay, Mar 11, 2010.

  1. leelaplay

    leelaplay member

    Parliamentary group slams NHS and Dept for Work & Pensions re people with ME/CFS

    Parliamentary group slams NHS and Department for Work and Pensions care for people with ME/CFS
    Thursday, 11 March 2010 18:42

    Failures by the NHS in many parts of the country to deliver adequate services to children and adults with ME/CFS, lack of training for doctors and poor performance by the Department of Work and Pensions and its contractor for medical assessments have been slammed by a Parliamentary group this week.

    The All Party Parliamentary Group on ME at their meeting on Wednesday (10 March 2010) unveiled its final report on the state of NHS services in England for people with the illness.

    Immediately afterwards, group chairman Dr Des Turner MP commented:

    Our report sets out clearly some long standing problems which are simply not being tackled by organisations that should be doing a much better job of supporting the 250,000 people in the UK with ME/CFS.

    "We are particularly concerned by the failure of many Primary Care Trusts to fund any services for ME/CFS patients, especially children and the most severely affected.

    "We are also deeply concerned by the by the poor knowledge that many doctors have about this illness and by the failure of the DWP and its contractor ATOS to understand its adverse impact on many patients ability to undertake regular work.

    The report was prepared by MPs Des Turner, Tony Wright, Andrew Stunell, Peter Luff and the Countess of Mar.

    It set out to evaluate the extent to which the NHS is providing care for people with ME particularly in primary and secondary care, and in specialist centres and multi-disciplinary teams.

    It sets out 11 recommendations to address the inequalities faced by people with ME.

    The final report can be read here
  2. Lelvina


    Thanks Island, very informative. I especially like recommendation #8.
  3. leelaplay

    leelaplay member

    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

    Recommendation 1
    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.

    Recommendation 2
    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

    Recommendation 3
    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.

    Recommendation 4
    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.

    Recommendation 5
    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
    where appropriate.

    Recommendation 6
    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.

    Recommendation 7
    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.

    Recommendation 8
    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.

    Recommendation 9
    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.

    Recommendation 10
    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

    Recommendation 11
    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.
  4. Lelvina


    Thanks Islandfinn! Those are all the questions I hoped someone would answer! Does this group have power? I don't know. Thanks for posting them all!
  5. ukxmrv

    ukxmrv Senior Member

    No the group has no power at all.

    The UK is due for a General Election sometime this year.

    The APPG on ME will be disolved at that time (as all APPG's are) and then after the election we may be able to start it up again.

    Dr Des Turner is standing down at this election so unless he goes to the House of Lords sometime, his involvement with this group ends.
  6. fingers

    fingers Senior Member

    SW Endland
    All our worries are over, they're looking at the Ligtning Process.

    Hiopefully it will strike the right people, then we can get some people in place who can listen, understand, think and act wisely.
  7. Bob

    Bob Senior Member

    England (south coast)
    This is interesting, from the APPG document, page 8:

    And, extracted from page 6:

    Table 1 Norfolk & Suffolk ME/CFS Service – 2009 Patient Survey p27

    Intervention / Helpful % / No change % / Not helpful %

    Pacing 77 12 6

    Rest 76 17 4

    CBT 20 21 40

    GET 13 10 58

    Extracted from page 6 (I've taken some info out of this chart, and rearranged it slightly):

    Table 2 Action for M.E. and AYME joint report “M.E. 2008: What progress” – page 13. 2763 people responded to the survey

    Intervention / Helpful % / No change % / Made worse %

    GET 45 21 34

    CBT 50 38 12

    Lightning therapy 53 31 16

    Pacing 82 15 3

    Rest inc bed rest 86 13 1

    And, extracted from page 7 (I've massively simplified this info, and rearranged it, so there might be mistakes in it):

    Table 3 Q 15 pp7 2008 MEA survey of 4,217 individuals (3,494 on-line; 723 on paper).
    Preliminary survey results were published in the MEA magazine in Spring 2009

    Intervention / Improved % / No Change % / Made Worse %

    GET 22.1 21.4 56.5

    CBT 25.9 54.6 19.6

    Councelling (other than CBT) 29.4 60.1 10.5

    Physiotherapy 30.5 36.7 32.8

    Modafinil/Provigil 37 33.3 29.6

    Yoga 39.1 32.9 28.1

    Lightning Process 44.5 34.7 20.8

    Pacing 71.2 24.1 4.7

    (update: please note that i previously had incorrect figures in the last column of the last chart)
    (please also note that in the last chart i have added 'greatly improved' and 'improved' together from the orginal chart and place the combined figures under 'Improved')

    Note: this forum doesn't appear to do charts very well!
  8. fingers

    fingers Senior Member

    SW Endland

    Thanks again, Bob, amazing work.:hug: (don't worry, I'm not gay...oh, shit, is that PC here?)

    We all know pacing works, it's what we've become adept at. It's what we've failed at. It's what we beat ourselves up about when we haven't done it.

    We don't need Fuk(uda)ing (this is now a standard ME term, thanks Suzy!!!) medics to explain this to us.

    I've forgotten what else I was going to say.....but I don't suffer from cognitive problems.

    Cheers, Bob
  9. Dolphin

    Dolphin Senior Member

    There's a thread on APPG services inquiry submissions

    There's a thread on APPG services inquiry submissions:

    Here's the executive summary of mine for what it's worth:

  10. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama
    fingers, you crack me up.

    I read once that the main benefit to evidence based counseling for CFS patients is that it teaches patients how to live within their limitations. How to live with the illness. And the comment I read was, "Patients usually end up learning that on their own without the help of the counselor." The message being that very little in treatment is available.

    "We all know pacing works, it's what we've become adept at. It's what we've failed at. It's what we beat ourselves up about when we haven't done it."

    I think your comment echos that. Pacing, we learn about it through our experience. But the way you put it is funny.

    And this made me laugh also:

    "Thanks again, Bob, amazing work. (don't worry, I'm not gay...oh, shit, is that PC here?)"

    Well, saying "gay" may be alright, but cussing may not be. LOL


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