DWP's proposed changes to DLA etc, ME/CFS

Discussion in 'Fibromyalgia Main Forum' started by tansy, Jun 20, 2005.

  1. tansy

    tansy New Member

    *MAY BE REPOSTED*



    *Background information*



    The government's Department of Work and Pensions (DWP) is currently in

    the process of making some major changes to the way in which Disability

    Living Allowance, Attendance Allowance, and Carers Allowance will, in

    the future, be administered.



    On Friday June 10th The ME Association was invited to attend a meeting

    at which it was explained how the various changes are likely to affect

    people with ME/CFS who apply for these benefits.



    Many of the proposals that were presented at this meeting - eg more

    personalised claims; improved gathering of further information; proper

    explanations as to why decisions have been made - appear to be genuine

    attempts to try and solve some of the problems that everyone agrees are

    part of the current process of benefit claiming, assessment and decision

    making.



    The DWP proposals also include the preparation of new guidelines on the

    medical and disability aspects of ME/CFS for use in the decision making

    process on individual claims. This new guidance will replace that which

    is contained in the current version of the Disability Handbook.



    The MEA has not been invited to take part in this consultation process

    up until now. Neither have we had any opportunity to take part in the

    process of developing the revised medical and disability guidance on

    ME/CFS. And it was not until the close of the meeting that the latest

    draft of this guidance was presented. Consequently, there was no time

    available to either read or discuss the content, and no further meetings

    between charity representatives and the DWP are currently planned.



    Having now had an opportunity to carefully consider the content of the

    proposed new guidance, The MEA believes that it is unacceptable. As a

    result, the letter below has been sent to the DWP today. We also intend

    to raise our concerns with the All Party Parliamentary Group (APPG) at

    their next meeting on July 6th.



    The issue of benefits is of enormous importance to people with ME/CFS

    and The MEA is determined to do all it can to persuade the DWP to

    provide guidance that is going to be acceptable to people with this

    illness. We will continue to update the ME Community on further

    developments.



    In the meantime would urge both individuals and local groups to do all

    they can to persuade their newly elected MPs to attend the APPG meeting

    in July.



    *Letter to the DWP from The ME Association*



    Mr Craig Isherwood

    Customer and External Relations Directorate

    Disability and Carers Service

    Room 103, Government Buildings

    Norcross Lane

    Thornton Cleveleys

    Lancashire FY5 3TA





    20 June 2005





    Dear Mr Isherwood





    Re: Disability and Carers Service Transformation - Improving Decision

    Making Forum held on Friday 10 June 2005





    Thank you for inviting me to attend this meeting on behalf of The ME

    Association in order to discuss the way in which the DCS is aiming to

    improve almost all aspects of the decision making process relating to

    claims for Disability Living Allowance, Attendance Allowance, and Carers

    Allowance from people with ME/CFS.



    As I said during the meeting, the basic proposals put forward in

    relation to many of the practical aspects of the decision making process

    all seem very sensible.



    However, the same cannot be said for the revised guidance on ME/CFS

    which was circulated right at the end of the meeting. Consequently,

    there was no time at all to comment on the actual content of this very

    important information.



    I have now had the opportunity to discuss this draft with ME Association

    trustees. Our view is that the information and guidance provided is

    completely unacceptable in its present form. This is because the guidance:



    a) contains far too much biased opinion presented as fact;



    b) contains statements which indicate that the group who prepared the

    draft have a very poor understanding of certain aspects of this illness,

    especially in relation to the levels of disability and functional

    impairment that it causes - for example, the conclusion that severely

    affected patients are unlikely to require any supervision at home or out

    of doors since their impairment of cognitive function is usually only mild;



    c) includes terms such as 'perceive as damaging', 'potentially

    disabling', and 'subjective' in relation to symptoms and resulting

    disability - all of which indicate that the group believes that

    inappropriate illness beliefs are far more important than any underlying

    disease process.



    d) fails to take note of some of the key points relevant to areas being

    covered that were made in the 2002 Chief Medical Officer's report into

    ME/CFS.



    So instead of helping to redress the current highly unsatisfactory

    situation whereby the only way for many people with ME/CFS to obtain any

    component of DLA is to take their case to Appeal, we believe this

    guidance is only going to make matters worse.



    We could, at this point, produce a detailed critique of the draft, but

    given the fact that no further meetings are planned which will involve

    patient representatives, this is not a satisfactory solution.



    We must also point out that if anything like this draft is eventually

    presented as revised guidance, then the DWP will inevitably find itself

    facing a political campaign from a group of people who believe that

    their views are just not being listened to on many key aspects of their

    illness.



    As was speculated on during the course of the meeting, there appears to

    be a fundamental flaw in the way these guidelines have been produced in

    that the group who prepared them are clearly biased towards a

    psychosocial model of cause and treatment for ME/CFS. We are therefore

    calling for a complete rewrite of these guidelines by a new and more

    balanced group of health professionals (two psychiatrists and no

    neurologist is unacceptable), and certainly one that includes health

    professionals who accept - as does the Department of Health - the WHO

    classification of this illness (ie ME, CFS, PVFS) as being a

    neurological disorder. There is, incidentally, nothing whatsover in the

    guidance about research findings relating to the neuropathology of ME/CFS.



    We feel it is only right to place this response in the public domain in

    order to keep our members informed and will therefore be placing a copy

    on our website today. We also intend to raise our very serious and

    urgent concerns about the proposed content of this new guidance with the

    All Party Parliamentary Group on ME/CFS when they next meet at

    Westminster on July 6th.



    For your information, we shall be sending by separate post a copy of the

    May 2005 ME Alliance report on Early Diagnosis and the latest (ie July

    2005 - due for publication shortly) edition of our guidelines booklet

    for health professionals as the information contained in these documents

    is relevant to the guidance on ME/CFS that needs to be given to the

    decision makers. If you would like further paper copies of either

    publication please let me know.



    Yours Sincerely



    Dr Charles Shepherd

    Medical Adviser

    ME Association

    [This Message was Edited on 06/25/2005]
  2. Rosiebud

    Rosiebud New Member

    I missed it first time round. I really dont understand what's happening here in UK especially after reading Canadian and Australian guidelines. I dont understand how the psychiatrists are getting away with it.

    Rosie
  3. tansy

    tansy New Member

    Hi Rosie

    Just goes to show how easy it is to get away with things like this in the UK if you have the financial backing (insurance companies), friends in high places (DoH, MRC, Linbury Trust, medical journals + ), and no conscience. AfME have much to answer for their role in all of this.

    ME/CFS is on the hit list for reducing the numbers on DLA and IB, with things as they are in the UK, PWME/CFS are an easy target.

    So what can we do about it?

    Write to our MPs enclosing the above and asking them to intervene on all PWME/CFS's behalves. Many PWME/CFS feel they cannot refuse the treatments that are making them worse for fear of losing their benefits, this situation cannot be allowed to continue unchalleged. The guidelines urgently need to reflect what is already known about ME/CFS. The problem for us as you know is the psychs behind the GET and CBT programmes insist ME/CFS is a functional somatic disorder, that's why they ignore everything else or interpret it to match their own hypotheses.

    I think Dr Gow's project running out of funding whilst the PACE trials recieve millions says it all. It stinks of corruption.

    love, Tansy
    [This Message was Edited on 06/25/2005]
  4. KelB

    KelB New Member

    Could I also suggest that anyone writing to their MP, quotes from the most recent correspondence or research from Dr Gow of Glasgow? The fact that CFS patients have a measureable DNA change, completely debunks the notion that this is a purely psychological condition and blows the proposed DWP criteria clean out of the water.

    Some people might be able to "imagine" themselves ill, but I doubt the most talented telepath could alter their own DNA just by wanting to be sick.
  5. KelB

    KelB New Member

    I've emailed the following to my MP. If anyone wants to, they're welcome to use the ideas but I do advise you not to just copy it verbatim. If MPs receive letters containing duplicate text, they are allowed to view them as a mass mailing and disregard them.

    **************

    Dear xxxxxxxxxxxxxxx,

    I am writing as a sufferer of Chronic Fatigue Syndrome, to express my concerns regarding a proposed revision to the guidance on assessing claims for Disability Living Allowance and other benefits.

    Whilst I am fortunate to suffer a mild form of CFS and not require the help of the benefit system, for others, it is a crippling illness that leaves them entirely unable to work and support themselves.

    The proposed guidance on the assessment of CFS patients has been drawn up with advice from two psychiatrists and no input from health professionals in other fields. This is a grave mistake.

    CFS has been characterised in the DWP's draft guidelines as a mild, purely psychosocial illness and not a physical condition. Not only does this serve to belittle the severity of symptoms some people suffer, but it also contradicts the World Health Organisation classification of CFS as being a neurological disorder. The Department of Health supports the WHO's position and I find it odd that the DWP should decide - unilaterally - that both the WHO and DoH are wrong.

    In addition, ongoing research at the University of Glasgow by the neurologist Dr Gow, has recently shown that DNA changes occur in CFS patients. This renders the psychiatric view at best, seriously questionable, and at worst, obsolete. There is a recognisable neuropathology to the condition that cannot be attributed to "faulty illness beliefs".

    To the psychiatric community, CFS sufferers are characterised as weak-willed people who effectively remain disabled because they derive some sort of benefit or satisfaction from this and have decided to "keep themselves ill". The assumption is that a patient can be persuaded to recover using therapy. The neurological research I mention above surely demonstrates that this is akin to telling someone that their broken leg will mend without treatment, if they only wish hard enough.

    Unfortunately, this prevailing prejudice seems to be allowing the DWP to determine that all CFS sufferers are automatically capable of working if they would only "pull themselves together". This is far from the truth, as could be proven if the DWP would undertake more meaningful consultation, rather than naively accept a biased view that does nothing but meet a requirement to claw back a few pounds into the benefits coffers.

    I urge you to press for revisions to these guidelines in respect of CFS, during which input should be sought from neurologists who are experts in this condition. Also patient representatives, who can better inform the DWP of the potentially serious nature of the disabilities that can be caused. Some sufferers have been bedridden for years.

    Without more accurately informed discussion, the proposed guidelines will result in a serious injustice to a group of very vulnerable people, who both need and deserve the full support of society.

    Thank you for any assistance that you can give in this matter.

    Yours sincerely
    xxxxxxxxxxxxx

    P.S. Dr Gow's research is currently paused due to lack of funding. I am certain that some government interest in his project would be most welcome both by him and by CFS patients in the UK.

    **********************

    If you live in the UK, you can find out who is your MP by going to this government web site. Some MPs do accept email - you'll be told that as part of their details:

    http://www.locata.co.uk/commons/
  6. tansy

    tansy New Member

    KelB

    Thanks for reproducing the e-mail to your MP here, it will give others a starting point which many I'm sure will find makes it easier for them to put together a letter or e mail to their MPs. Official letter writing can be a daunting task for PWME/CFS

    Not all pyschiatrists are bad, but some like the Wessely School have abused their position and their influence even though they are constantly being told of the harm they are doing.

    love, Tansy.



    Written by John Diamond author of “Facets of a Diamond”, Enchantment Books, 2003.

    “I am no longer a psychiatrist. I renounce it because I believe cruelty is at the core of the profession. I do not mean to say that all psychiatrists are cruel. Rather, I believe that there is something inherent in the profession that tends to bring out any cruelty lurking within. I have long wondered why this profession --- which ought to be so compassionate---has, it seems to me, turned its back on humanity. So often, regardless of whatever superficial reason he may give, the choice is really whether or not to be cruel to the helpless victim before him. If (psychiatry) proclaimed the supreme importance of love as the greatest therapy, then the profession could not tolerate cruelty within it – and would then attract a different type of doctor to enter into it”.




    [This Message was Edited on 06/25/2005]
  7. KelB

    KelB New Member

    Bumping back to page 1, so that more UK folks can see it on Sunday.
  8. smiffy79

    smiffy79 New Member

    firstly thanks tansy.
    this is all in the run up to 'path ways to work' or whatever they are calling it now.
    in the long run its all about forcing disabled ppl back into some sort of work-and so reducing dla/ib numbers.
    they have done it to single mums and now they will attack us.
    smiffy

    they are also changing the fms criteria-i keep trying to reaed it all but i cant keep iut in but it was reported in the fms/cfs magazine FaMily magazine (available to order on tyhe web)
  9. angeldust

    angeldust New Member

    My own opinion is that those who can collate professional medical evidence about the severity of disability will be just fine. For many this will mean going privately, those reliant on the NHS will have difficulty.

    The ME Association and Action for ME are a joke and have done too little too late or actively encouraged the ridiculous situation ME sufferers find themselves in.
  10. tansy

    tansy New Member

    I had to resort to this some years ago, it was independent medical reports and those made by physiotherapists (PTs) and specialist occupational therapists that really supported my case. Even back then there was sufficient medical evidence for most of my problems to be taken seriously but they were ignored; there has been a lot of butt covering in my case because certain medical professionals’ negligence and game playing had made me worse and more physically disabled.

    My MP back then finally had to resort to asking the Ministers’ office to review my case and advise us both on what we should do, rather than give advice they awarded my DLA immediately and within a few years it was awarded indefinitely. I doubt this would work now that the Wessely School, AfME and the MEA have allowed the situation for all PWME/CFS to deteriorate to the current level. The Labour Party are as a whole more interested in making their projected numbers work whatever the cost, but many individual MPs (including Labour Party back benchers) are genuinely concerned about the consequences for their constituents.

    My success with DLA occurred before the Wessely School had achieved their rise to infamy, and at a time when both the MEA and AfME understood their roles were to act in the best interests of PWME/CFS.

    Our MPs can help us individually and nationally, but need to know what has really been going on in order to understand more recent policies on ME/CFS. Many will write back saying they support the MEA and AfME, but that’s just what we don’t need. Better to ask them to ensure the 25% are allowed back into the APPG meetings and to speak on our behalves, they are the national organisation who best represent the needs of all PWME/CFS, even those who are not deemed to be severely affected.

    Love, Tansy

    [This Message was Edited on 06/26/2005]
  11. tansy

    tansy New Member

    chronic back pain are all being targetted.

    The Wessely School's hypotheses made them popular with the insurance industry (health care, disablity, early retirement), this is why their attitudes and careers have been so lucrative for them. Patients' lives don't matter to members of the Wessely School, professional kudos and financial gain do.

    Even international medical specialists, who have tended to avoid getting involved in politics, are now saying the only way things can be changed now is politically. The corruption, misleading guidelines, deliberately misleading official information, corporate interests is all well documented. It just needs the will and determination of those able to expose it all in the public arena; it would then be difficult for the policy makers to validate contining to target those least able to fight back.

    love, Tansy
    [This Message was Edited on 06/26/2005]
  12. Rosiebud

    Rosiebud New Member

    I'm currently waiting on a reply from the DLA as my allowance ends in August and I had to re-apply - I've had to appeal both times previously and first time had to go to a tribunal. Looks like you got them by the short and curlies Tansy but like you say, who know what would happen now?

    I'm in no doubt that I will have to appeal again, though I have to say I'm in two minds about it - the way things are going would I have a chance? Then again why should I shut up and take what they offer when I know what I should be getting?

    The Wessley school are in receipt of government grants and, I heard but may be wrong, funded my pharmaceutical and chemical companies?? Anyone else heard that? Obviously if they change tact and admit they are wrong they are going to lose all this funding.

    It's an awful situation, I remember when the CME guidelines came out, I was so excited and now????? I dont even want to say I have CFS anymore, I'm glad I've been diagnosed with Fibro too to back up the terrible pain I have always had, because 'CFS' wont do that anymore.

    I'm blethering and ranting here.

    Rosie
  13. KelB

    KelB New Member

    I had an automated reply to my email, plus my MP replied by letter. She has passed my original letter to the Under-Secretary of State for the DWP, Anne McGuire, and asked her to respond to my concerns.

    If/when I hear anything else, I'll let you know.
  14. tansy

    tansy New Member


    MAY BE REPOSTED

    On June 20th, The ME Association responded to new proposed guidelines on
    medical aspects of ME/CFS which are being drafted to replace the current
    entry in the DLA Handbook. This response can be found on the MEA Website
    at: http://www.meassociation.org.uk (see 'News from the ME Association').

    We have now submitted a further more detailed critique of the overall
    content of the draft in response to what we believe is a very disappointing
    response from the DWP to our original criticisms of the draft. This is set
    out below.

    -----------------------------------------------------------------------------

    Dr Roger Thomas
    DWP Corporate Medical Group
    Room 623
    The Adelphi
    1-11 John Adam Street
    LONDON WC2N 6HT


    13 July 2005


    Dear Dr Thomas


    Re: Customer Case Management Guidance for ME/CFS


    Thank you for your letter dated 28 June 2005.

    Unfortunately, we were very disappointed with the response to our
    criticisms of the current draft in that the response clearly implies that
    the DWP is happy with the overall content and the way in which this advice
    is likely to affect the decision making process for future benefit
    applications from people with ME/CFS.

    As the ME Association remains convinced that the overall content will only
    make a bad situation even worse, and that this document now requires a
    complete rewrite by a more balanced group of health professionals, we are
    therefore reluctant to enter into a consultation process which seems likely
    to achieve little more than minor adjustments to the wording of the current
    draft. We shall therefore limit this response to a critique of the areas
    where we feel the current draft is unacceptable. This is set out below.

    We have also seen a copy of the letter sent by BRAME to the DWP in which
    very similar concerns to our own have been raised. And we took these
    concerns from the two ME/CFS charities currently involved in the
    consultation process to a meeting of the All Party Parliamentary Group
    (APPG) on ME/CFS that took place last Wednesday at the House of Commons. I
    understand that the Chair of the APPG will be contacting the DWP in due course.


    Criticisms of the current draft


    1 THE BIASED COMPOSITION OF THE GROUP THAT PREPARED THE DRAFT

    We find it unacceptable that DWP guidance on an illness, which the DoH
    classifies as neurological (under G.93.3 of WHO ICD10), should be produced
    by a working group that contains two psychiatrists, but no neurologist or
    medical adviser from one of the main ME/CFS charities. If medical advisers
    from the main ME/CFS charities are invited to participate in initiatives
    relating to ME/CFS from NICE, the CMO, and the DoH on NHS service
    provision, then the DWP should also be operating in the same inclusive manner.


    2 SOME OF THE STATEMENTS INDICATE THAT THE GROUP HAS NO PRACTICAL
    UNDERSTANDING OF THE ILLNESS THEY ARE DESCRIBING

    Example: When describing the disability experienced by the severely
    affected it states (27: second para) that: 'There is unlikely to be any
    requirement for supervision either at home or out of doors, since
    impairment of cognitive function is usually only mild'. The clear
    implication that significant cognitive dysfunction does not occur in the
    severely affected is quite extraordinary.


    3 THE GUIDANCE IS VERY MUDDLED IN PLACES

    Regardless of our disagreements on content, the draft is muddled and badly
    written in places - especially the way in which it discusses various
    aspects of possible causation in more than one section.


    4 INFORMATION ON CAUSATION/AETIOLOGY IS STRONGLY BIASED TOWARDS THE
    PSYCHOSOMATIC MODEL AND CONTAINS OPINION AND SPECULATION PRESENTED AS FACT

    Causation of an illness is not usually relevant to entitlement to state
    sickness and disability benefits - this should be based on the person's
    level of ill health and disabilty.

    However, this document contains numerous statements, many of which are not
    based on sound published research, which infer that psychosocial factors
    are far more important than organic ones - something that will only help to
    reinforce the scepticism of some DWP decision makers.

    Examples include statements about personality acting as a predisposing
    factor and that life events such as marital separation or redundancy also
    act as trigger factors - none of which can be supported by reliable
    research evidence. Yet many of the physical trigger factors referred to in
    the CMO report (eg immunisations, OPs) are curiously omitted.

    There is even a section - 'Is CFS a physical illness' - which makes no
    real attempt to summarise evidence which does support the case for ME/CFS
    being classified as a neurological disease. We sense that the DWP does not
    want to acknowledge this important decision on neurological classification.


    5 INFORMATION ON SYMPTOMS AND DISABILITY IS STRONGLY BIASED TOWARDS THE
    PSYCHOSOMATIC MODEL

    Repeated use of terms such as 'subjective', 'perception of', 'potentially
    disabling', 'rate themselves' strongly infers that symptoms and resulting
    disability have far more to do with abnormal illness beliefs and behaviour
    than any underlying disease process.

    There is prominent referral to various psychiatric symptoms which we fully
    accept do sometimes occur (eg depression), as well as others which are much
    less common (panic attacks). By comparison, there is no mention at all of
    the serious and disabling neurological symptoms referred to in section
    4.2.1.2 of the CMO report.

    The description of the type of fatigue experienced in ME/CFS is grossly
    inadequate. The authors really ought to look at the description of ME/CFS
    fatigue contained in the CMO report.

    There is also a much better description of the various levels of disability
    in section 3.4.3 of the CMO report.


    6 THE INFORMATION ON MANAGEMENT IS OVER-SIMPLISTIC, OVER-OPTIMISTIC AND
    STRONGLY BIASED TOWARDS THE PSYCHOSOMATIC ILLNESS MODEL

    The review of the possible value of cognitive behaviour therapy (CBT) and
    graded exercise therapy (GET) is seriously unbalanced and far too
    optimistic about the possible overall value of these two controversial
    approaches to management.

    The balanced way to present this information is to do the same as in the
    CMO report where inconsistent evidence from randomised controlled trials,
    patient experience and clinician experience was all given roughly equal
    prominence. The CMO report noted that 50% of a large sample of patients
    (number = 1214) found that graded exercise made them 'worse'. And in
    another patient survey referred to in the report, 67% stated that CBT
    produced 'no change' in their condition. It is therefore misleading to
    conclude (in 21) that 'People with established ME/CFS of moderate severity
    lasting one to two years are likely to need to undertake a more extensive
    programme of treatment, as described above (ie one that involves CBT and
    GET), lasting 6 to 12 months. Most people who attend hospital for
    treatment will make a significant improvement with appropriate treatment'.

    Pain can be persistent and severe - the simple analgesics and NSAIDs
    referred to in section 18 of the draft are just not effective in this
    situation. And as pointed out in the CMO report, consideration then needs
    to be given to the use of more powerful analgesic drugs (eg gabapentin).

    The advice on antidepressants (section 18) needs clarification as normal
    doses are of no benefit to the underlying disease process and many patients
    are highly sensitive to drugs such as fluoxetine, sertraline, citalopram
    that act on brain chemical transmitter systems involving serotonin (there
    is some recently published research on this, of which I suspect the DWP is
    unaware). Reference to the appropriate use of antidepressants is fine but
    this must also point out that these sort of drugs have to be prescribed
    with great care.



    7 THE DRAFT FAILS TO ACKNOWLEDGE A NUMBER KEY POINTS THAT WERE CONTAINED
    IN THE CMO REPORT WHICH ARE RELEVANT TO BENEFIT PROVISION

    For example, the use of the Fukuda diagnostic criteria is referred to in
    some detail in the draft (sections 4 and 5) but there is no mention of the
    key point - 'Current diagnostic criteria are useful only for research
    purposes' - contained in the CMO report. These research guidelines have
    serious flaws when used in ordinary clinical practice, in particular the
    requirement that symptoms have to be present for six months or more before
    the diagnosis can be confirmed. The problems with using research criteria
    such as Fukuda for clinical purposes are described in more detail in the ME
    Alliance report on Early Diagnosis - you should now have a paper copy of
    this report.

    The CMO report also states (in section 4.4.2) that 'It is not appropriate
    that participation in a particular treatment regimen is made an absolute
    condition for the continuation of sickness/disability payments'. If the
    DWP is going to start providing advice on behavioural and pharmacological
    forms of treatment, as is clearly the case in this draft, then it requires
    this caveat as well.


    Finally, to illustrate the quite unacceptable situation that many people
    still face when claiming state sickness and disability benefits, we refer
    to an email from one of our members that was received the day before the
    APPG meeting and was quoted at this meeting.

    The member describes himself as being 'in continuous battle' with the DWP
    for a period of approximately five years. His first claim for DLA was
    refused. A year later his appeal was heard, which resulted in him being
    awarded higher rate mobility and middle rate care component. A renewal
    application was then refused forcing him to go through the same prolonged
    and stressful appeal procedure yet again. On this occasion he was awarded
    higher rate mobility and higher rate care for two years. At renewal he has
    again been turned down - despite evidence from his own doctor that his
    situation remains the same.

    There is clearly something seriously wrong with a benefit assessment system
    which makes such inconsistent decisions and causes such distress to
    claimants. So the ME Association just cannot understand why the DWP is now
    considering issuing the type of unhelpful medical guidance that has been
    drafted.

    We do, therefore, hope that a change of mind can occur - even at this
    rather late stage in the process.


    Yours sincerely

    Dr Charles Shepherd
    Medical Adviser, ME Association

    4 Top Angel
    Buckingham
    MK18 1TH

  15. tansy

    tansy New Member

    is now chasing up three issues: the misleading guidelines for benefits, asking why public funding is only being used to support the psychologiser's hypotheses, and challengng the advice that PWME/CFS do not need to have their health issues investigated etc. The last one of these is based upon collective and personal accounts of medical neglect and abuse.

    love, Tansy
  16. tansy

    tansy New Member

    **DLA Handbook update: update on meeting with DWP


    The DWP has now agreed to arrange a further meeting to discuss the draft
    which The ME Association and BRAME have both concluded is completely
    unacceptable.

    This meeting is due to take place in October on a date to be arranged.

    Thank you to everyone - individuals and local groups - who have brought this
    matter to the attention of their MPs. Ministerial correspondence back to the
    MPs suggests that his action appears to have had a very significant effect
    in making sure that a further meeting takes place to look again at the
    content of these proposed new guidelines.

    Some people have also raised the issue of the identity of the group of
    health professionals who have prepared this new guidance. The ME Association
    believes that this information should be in the public domain - just as the
    membership of the CMO Working Group was made public. The current situation
    is that neither of the charity representatives who have been involved in the
    negotiating process up until now have been given this information either.** ME Association
  17. KelB

    KelB New Member

    From Martin Craske, Director, Business, Design & Change Programme, Dept of Work & Pensions.

    Dear Ms Brooke [my MP, who passed my original letter above to the DWP]

    Thank you for your letter of 30 June 2005 to Anne McGuire MP enclosing correspondence from Ms Bxxx concerning the medical guidance on Myalgic Encephalomylitis/Chronic Fatigue Syndrome (ME/CFS). I have been asked to reply on behalf of Ms McGuire.

    I was sorry to read of Ms Bxxx's concerns. Entitlement to DLA is based on the care and mobility needs arising from a disability or illness rather than the diagnosis of the condition itself. Except for the consideration of the higher rate mobility component where the decision maker needs to consider whether a physical disability exists, aetiology of the condition is not important.

    The Department recognises ME/CFS as a disease of mixed physical and psychological origin and this is acknowledged in the guidance on this disability. Where a clinical diagnosis of the condition has been made, full account is taken of its effect on a customer's ability to walk and self care.

    Turning to your comments about the ME/CFS guidance we are developing an IT-based system called Customer Case Management (CCM). This will provide better support to decision makers when deciding claims for DLA and Attendance Allowance (AA). Part of this support is guidance which provides background medical information about the customer's condition and identifies key medical considerations.

    In support of our commitment to engage in more open consultation with customer representative organisations, officials from the Disability and Carers Service and CMG have met various Welfare Rights Groups to consult them about CCM and the supporting medical guidelines. The meeting with the CFS group, a sub-group of the Modern Services Working Group (MSWG), took place on 10 June. At the end of the meeting, the guidance was given to members of the group to consider fully and their written comments were requested. Officials undertook to consider all comments and incorporate them where this would improve the guidance.

    Some general comments were received on 20 June and were also published on the ME Association's website. Officials have responded to these general points and have again asked for detailed comments which have now been received. A further meeting has therefore been arranged for 9 August 2005 to discuss the concerns around the guidance. A number of medics, and lay representatives from ME/CFS organisations, including the ME Association, Action for ME, Association of Young People with ME, 25% ME Group and BRAME, have been invited to take part in the meeting.

    The CCM process is to be tested later this year and the evaluation will include the quality and consistency of the decisions made using the guidance and whether of not it improves customer service.

    I hope that Ms Bxxx finds my reply helpful.

    Yours sincerely
    Martyn Craske
  18. KelB

    KelB New Member

    -----
    "..the aetiology of the condition is not important."
    -----
    It is with ME/CFS as there is still discussion about whether it's psychological, physical or both. Care needs are bound to be considered more carefully if a patient is presented as suffering a physical condition.

    Anyway, if the aetiology isn't important, why have they only consulted psychologists? Surely by their own logic it won't do them any harm to involve those who consider the condition to be of physical origin?

    -----
    "The Department recognises ...ME/CFS... as a disease of mixed physical and psychological origin..."
    -----
    Well the Dept of Health and World Health Organisation say that it's of purely physical origin (unless I've misunderstood their guidelines - Tansy?). Mr Craske failed to address the point in my original letter.

    -----
    "...we are developing an IT-based system called Customer Case Management..."
    -----
    I work in IT and if you put garbage into a system, you get garbage out. Whether the information on ME/CFS is presented on scraps of paper in a tatty ring binder or on the gleaming screen of a spanky new computer system, if it's inaccurate then then the outcome will be the same. This is just obfuscation.

    -----
    "...meeting with the CFS group, a sub-group of the Modern Service Working Group..."
    -----
    I'd like to know the members of this group and whether there were any medics in there with ideas on the physical origins of the condition.

    -----
    "Officials undertook to consider all comments and incorporate them where this would improve the guidance."
    -----
    i.e. Officials reserved the right to completely ignore the input if they wanted to. Pointless.

    -----
    "Some general comments were published on the ME Association's website."
    -----
    Whilst it's good that they are at least trying to reach out to the community, I wonder if anyone's bothered telling them just how unrepresentative and chaotic this particular organisation is? It seems to be more about the egos of committeee members than representing ME/CFS people. Not the most appropriate single place for "first contact".

    -----
    "A further meeting has therefore been arranged for 9 August..."
    -----
    Whilst it's helpful that consultations with patient groups are ongoing (although maybe a couple of the groups are not that representative), there's still no undertaking that any "medics" other than psychologists will be involved, which is what I was looking for. Shame it's too late for me to try and influence that. Good news is that the 25% group seem to be back in favour.

    Wonder why they're holding the meeting in August and not October as originally stated in one of Tansy's posts above? Nothing to do with people being away for summer vacations, surely? Or am I just being cynical....?
    [This Message was Edited on 08/06/2005]
  19. KelB

    KelB New Member

    Dear Mr Craske

    Changes to DLA/AA Guidelines for ME/CFS - Your letter dated 25 July 2005

    Firstly, many thanks for taking the time to reply to my original email to Ms Annette Brooke MP, dated 25 June 2005, that was then passed on to Anne McGuire, Under-Secretary of State, for a response.

    Unfortunately, your reply fails to address my key points and gives rise to further concern. I am particularly interested in your further clarification of your comments below:


    * "...aetiology of the condition is not important"

    1) This is a most alarming statement, given that the DWP to my knowledge has only involved psychologists in their discussions. If the aetiology of the condition is not clearly understood, then the physical impacts on the sufferer will not be properly recognised.

    2) This point is not purely a matter of aetiology, as many of the symptoms of ME/CFS have debilitating physical impacts which cannot be adequately explained by a psychologist (as the DWP is not concerned with the aetiology, then this can be the only purpose of the psychologists' involvement).

    The assessment for DLA is, as you point out, based on a customer’s ability to walk and self-care; if these aspects are not explained in actual physical terms by a medical expert who understands the physiological processes involved, then any assessment is bound to be flawed.

    When considering for example, Multiple Sclerosis, have you not involved medical staff who understand the physical impacts of the illness? In the case of ME/CFS, you are taking patient reports on the sometimes severe physical impacts of the illness and having these explained only in psychological terms. This is extremely inappropriate and should be urgently addressed.


    * "The Department recognises ME/CFS as a disease of mixed physical and psychological origin..."

    1) This is surprising, given (as stated in my original letter) that both the Department of Health and the World Health Organisation recognise ME/CFS as being of purely neurological origin, under G.93.3 of WHO ICD10.

    Again, I would ask you on what basis the DWP has established its criteria for this illness and why they differ from those given by the WHO and a different department of the same government?

    2) Given that the DWP recognises the physical nature of the condition, as well as the psychological aspect, please can you give me the names and specialities of the medical experts in the physical aspects who have been consulted?

    Recognising the physical nature of a condition and then failing to consult medical experts on it, appears at best to be a lack of diligence.


    * "We are developing an IT-based system..."

    I have worked in the IT industry for twenty years and I am sure you are familiar with the concept of GIGO - "Garbage In, Garbage Out."

    It does not matter whether guidance information is presented on scraps of paper in a tatty ring binder, or on the shiny screen of a new computer system; if the information is wrong, the outcome of the assessment will inevitably also be wrong.

    An "IT-based system" will in no way address any of the concerns outlined in my original correspondence.


    * "...a number of medics..."

    Again, I would like assurance that amongst this "number of medics" at the meeting on 9 August, there are those expert in the physical origins and impacts of ME/CFS and not just psychologists.

    Many of the groups being consulted (the ME Association, Action for ME etc) will be able to guide the DWP to suitably qualified experts. I believe that NICE, the CMO and the DoH have all consulted such experts during their various deliberations on ME/CFS, so a comfortable precedent has been set for the DWP to follow the same consultative path.


    In summary, I would like to know:
    * The names and fields of medical experts involved in any part of this consultation process, who are NOT psychologists
    * The reason why the DWP criteria for ME/CFS differ from those laid down by the WHO and used by the DoH

    I await your response with interest. Thank you for your time.

    Yours sincerely
    etc.

    .cc Ms Annette Brooke, MP, by email

    [This Message was Edited on 08/06/2005]
  20. tansy

    tansy New Member

    This is what we all have to do, keep our MPs involved and challenge the incorrect proforma replies sent to them. Mine sees through the spin so it's a lot easier.

    If the proposed changes go ahead it will mean fewer PWME/CFS will be awarded DLA. ME/CFS are on the list of conditions earmarked to help the govt fulfil it's promise over cutting down the number on IB as well as DLA.

    I liked the additional IT info and it's significance.

    The regular references to the psychological apsects of ME/CFS are very telling, and this is what we need to address when replying to letters. Since ME/CFS is a neurological illness which also effects the immune system (as recently confirmed by Gow and Kerr's work), the muscles, endocrine system, affects our ability to use our intellect (significant drops in IQ scores during illness) + + +; specialists in these areas should have been involved.

    Thanks.

    love, Tansy

    [This Message was Edited on 08/06/2005]