Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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DWP call ME/CFS a mental health condition

Discussion in 'Finances, Work, and Disability' started by ladycatlover, Apr 5, 2017.

  1. ladycatlover

    ladycatlover Senior Member

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    http://www.benefitsandwork.co.uk/news/3617-enhanced-rate-mobility-for-mental-health-dwp-examples

    The DWP have told an influential parliamentary committee that claimants with a mental health condition but no physical health condition, will still be able to claim the enhanced rate of the mobility component of personal independence payment (PIP).

    However, the ‘non-exhaustive’ list of claimants with mental health conditions only, who will still be able to claim the enhanced rate includes people with ME/CFS, people with cognitive impairments, people with developmental disorder and people with psychosomatic pain.​

    I'm really angry about this - ME/CFS is NOT a "mental health condition". They've obviously been listening a bit too hard to those who want to dump it into MUS etc. Fuming here! :mad: :bang-head: :rolleyes:
     
  2. Valentijn

    Valentijn Senior Member

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    Original document is at https://www.publications.parliament.uk/pa/jt201617/jtselect/jtstatin/152/15216.htm#_idTextAnchor061

    Very bizarre that they include Down's Syndrome as a "mental condition (unaccompanied by a physical condition)". Down's Syndrome is very physical and there's often a much shorter life expectancy as a result. My cousin made it to 14 before it killed her - that is not the result of a mental condition.

    The ME sections:
    They really aren't making sense. First it might be physical and/or psychological, then it's one of the examples of a mental health condition without physical disability - but maybe not :confused: I think that they think it's 100% mental and behavioral, but are adding "maybe not" clauses to avoid getting their asses handed to them on a silver platter.
     
  3. Skippa

    Skippa Anti-BS

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    I seethe with frustration...

    Eta: *rant deleted* too triggering

    Eta2: @Valentijn I don't even think they *think* it is mental, I think they just don't care and want to paint it as mental just to save money. They have targets to meet in benefit reduction, and keeping up to 250k patients off of benefits gets them a long way towards that.
     
    Last edited: Apr 5, 2017
  4. UKmum

    UKmum

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    They don't know how to deal with the complexity of CFS in the benefits system. At least they are admitting to not understanding it and sitting on the fence that it could be a combination of physical and mental issues. I know many parents have recently had problems with their kids claims and had to appeal- is this specific mention of CFS an improvement in the chances of being awarded enhanced mobility? Probably a silly question...
     
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  5. hellytheelephant

    hellytheelephant Senior Member

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    Oh for ****s sake! I would like to say I am surprised, but on the report they sent me re the appeal, they DID NOT INCLUDE ME AS ONE OF MY CHRONIC ILLNESSES!!!

    I totally agree with you @Skippa - as if it is not bad enough a) to have your life taken away by a serious illness, b) to be afflicted by an illness that faces huge prejudice, and d) is extremely underfunded and poorly treated...we now have to add e) not being entitled to enough money to scrape by on....

    words ( polite words) fail me......@Skippa I have had to self edit too- I am seething AND in pain and bed...

    @UKmum - I don't think so.....
     
    Last edited: Apr 5, 2017
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  6. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I'm lost for words on this.....ive tried to write something intelligent but the tendency to want to scream is preventing me.

    It's just such BOLLOCKS! :mad::cry::bang-head::thumbdown::aghhh:
     
  7. trishrhymes

    trishrhymes Senior Member

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    This is very raw for me, as I spent a couple of hours on Monday lying in my bed talking through my symptoms and difficulties etc. with a very knowledgeable and sympathetic Citizens Advice Bureau case worker who was filling in my application form for PIP for me.

    I am hoping to get enhanced mobility on the basis of my physical inability to walk more than 20 metres without pain, difficulty and in a timely manner, or whatever their jargon is. I have been on higher rate mobility DLA for some years, and am going through the transfer process.

    I was not able to say much on the mental health side of mobility, except that I need someone with me because of the physical need to push a wheelchair when I go out, and cannot use public transport because I cannot sit upright for long enough without needing to lie down etc - in other words, my constraints are physical not mental. Though I did mention anxiety in such situations, but it was anxiety about physical collapse...

    I could lie in bed and use a route planner on-line or a map to plan a journey, but that's irrelevant, as I wouldn't be able to carry out the journey physically. I doubt I'll get any points on the mental health side of mobility - I'm relying wholly on them believing I can't walk more than 20 metres at a time. If they are assessing it as a mental illness, and ignore the physical side, I'm stuffed.
     
  8. boolybooly

    boolybooly

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    I am in the middle of PIP, tribunal next week, slightly terrified, interesting news though, trying to keep a cool head, as I know strong emotion will only exhaust me and start a downward spiral of anger, exhaustion and confusion which will hinder my search for justice.

    I think the good news is that the DWP are saying ME CFS can deserve enhanced mobility and is not excluded, nor should it be.

    I think that their statement as follows was not unreasonable...

    "As explained above, Chronic Fatigue Symptom (CFS), also known as myalgic encephalomyelitis (ME), has complex causes which are still not well understood, but which may involve both physical and psychological factors."

    ...from which I take it ME CFS was included because they are talking about the kind of disability it induces rather than its causes and I think its true that ME CFS does have a devastating impact on the mind due to its neurological affects. What they are saying is ME CFS has mental and physical affects and you can score points for both. I dont think they are making a statement about aetiology.

    What is rather confusing about that is they preface the discussion by saying...

    https://www.publications.parliament.uk/pa/jt201617/jtselect/jtstatin/152/15216.htm#_idTextAnchor061

    "amendments made by regulation 2(4) do not have the effect that a person with a mental condition (unaccompanied by a physical condition) can never be entitled to the mobility component"

    They do seem to have included ME CFS as an example of a mixed case though and the attitude does seem to respect it is real and we don't understand it and it was considered as a separate and different case to psychosomatic illness.

    I think the really bad news about current assessment is that Capita have not been applying the reliability criteria...

    http://www.express.co.uk/news/uk/765242/PIP-Atos-disability-activists-assessors-fail-test-claim

    ... which are essential to a fair assessment in ME. I can testify to the reality of this.

    Also the DWP are through Capita encouraging HPs to make complex decisions on complex conditions in relation to complex descriptors while pressurising and incentivising them to do it quicker. The HP who assessed me really didnt seem to have time to do a proper job of understanding my answers.

    However I believe HMCTS will only be encouraged to give me and others a fairer hearing by this statement. So I dont see it as unfortunate. I do think we should be getting fair hearings in the first instance though and I think the evidence is that we are not.
     
  9. hellytheelephant

    hellytheelephant Senior Member

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    I wish you good luck @boolyhooly for the tribunnal. I think the word 'psychological' is red rag to a bull for most of us....
     
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  10. Esther12

    Esther12 Senior Member

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    If they're dumping all they can into the 'lesser' disability of MH, maybe they're categorising by symptoms. eg any cogitive/emotional symptom of Down's Syndrome is 'MH'? That way they can claim that a certain precisely identified percentage of someone inability to walk is related to MH factors?

    Isn't it lucky ATOS are so amazingly good at getting these things exactly right.
     
  11. Mohawk1995

    Mohawk1995 Senior Member

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    It seems to me that at the core of this is money (or the lack thereof). When a government controls healthcare they are going to ration it (and have the power to do so with impunity). The delivery of medicine becomes less about that patient and more about "the collective". If you have to make cuts or ration care, you are first going to look at things that either cannot be fully understood/treated easily or have less political sway. Unfortunately for those in the UK (and other countries too) that means care for diseases such as ME is going to be highly rationed. There will also be a money grab for what little funds are available (this case by psychiatry). Notice, I have not mentioned anything about the practice of medicine or the science to support it. That becomes secondary to the money equation.

    Granted in the US, you have private sector Insurances exerting their "influence" on the matter of treating these difficult diseases. In some ways that is not a whole lot better, but I would rather take on one insurance company at a time than take on the entirety of the Federal Government. Even better if changes occur to open up more competition between the Insurance Companies in my opinion. There will always be issues. Just a matter of "picking your poison" in many ways.

    PS MUS in a country in which healthcare is rationed by the government is just another way of saying "we are not going to pay for something WE can't explain". Also even easier to dump these disorders into the Psychiatric bucket because that can also make it "the patient's fault".

    As a definition "Psychiatry is the medical specialty devoted to the diagnosis, prevention, study, and treatment of mental disorders. These include various abnormalities related to mood, behaviour, cognition, and perceptions" (these are all primarily conscious or at the most subconscious functions). According to this definition a Psychiatrist would not be qualified to treat someone who has a physiologic, metabolic, bio-chemical and hormonal dysfunction related to Neuro-Immune Endocrine systems (which many believe ME to be). Their treatment of anyone with the disease should be limited to the secondary and completely understood psychological ramifications of living with a devastating disease or assisting to address a preexisting mental health issue if one even existed. They should not be "driving the bus"!
     
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  12. Snowdrop

    Snowdrop Rebel without a biscuit

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    Of course that presumes that one does have insurance coverage. The chronically ill probably are more likely to not be covered.
     
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  13. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Might this be more to do with how they award points in the UK benefits system? They seem to separate out the mental (read also cognitive function) from the physical. Both ME and Downs' Syndrome would be both, but this doesn't suit the structure they've devised. For Down's Syndrome they probably expect most of the reason you're claiming benefit (or barriers to employment) to be related to learning difficulties. ME isn't really even more one than the other though.

    Personally I score highly on the physical side. How many metres I can walk isn't actually what stops me from going out to work, but claiming benefits is a lot easier once you need a wheelchair!
     
  14. Skippa

    Skippa Anti-BS

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    Thing is, they go to great lengths to explain they aren't there to diagnose you, but to assess your EXACT symptoms in relation to work... quite simply, and frankly, can you do x? Can you do y?

    Given that, I don't think they should be categorising any illness by name period.
     

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