The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Should sickness/disability benefits be conditional on adhering to treatment (UK) ?

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Jul 30, 2015.

  1. charles shepherd

    charles shepherd Senior Member

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    Should DWP sickness and disability benefits be linked to compliance with treatment? (UK)

    This is something that is being discussed at a political level here in the UK, especially in relation to some types of addictive behaviour

    But it also has implications for conditions such as ME/CFS where there are major differences between the published evidence from clinical trials and the patient evidence on safety and efficacy of treatments that are recommended in the NICE guideline on ME/CFS - i.e. CBT and GET

    The current government position is that payment of DWP benefits cannot be refused on the grounds that someone has decided that they do not want to take a drug, surgical intervention, or other form of treatment that is being recommended by a health professional, or by NICE

    But this could change……...

    Guardian discussion:

    http://www.theguardian.com/commenti...-people-mental-health-problems-work-treatment
     
  2. worldbackwards

    worldbackwards A unique snowflake

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    I suspect if this happens, there will be a major rebellion by the doctors/psychiatrists. Interestingly enough, Big Si has come out strongly against this.

    It's also interesting that they're going for fat people/alcoholics initially. They're trying to set precedent with problems that can be defined as "lifestyle choices". It's the thin end of the wedge basically.

    Pardon me if I don't go on CiF, I don't want to get into a row with some idiot on the merits of Jeremy Corbyn.
     
  3. justy

    justy Donate Advocate Demonstrate

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    As there is NO treatment that will help everyone with ALL conditions (perhaps something like insulin for diabetics is an exception) then it cannot be morally right to make entitlement to benefits dependant on compliance with a treatment that someone else has decided for the patient.

    CBT is still, despite serious evidence to its lack of efficacy for most mental health problems, the treatment of choice for pretty much every mental health condition in the UK, and for most addictions as well, yet will not be suitable for a large proportion of people with mental health problems, or may not be enough or may be too little too late.

    What about the use of anti depressants? M.E/CFS is often diagnosed by GP's as depression or anxiety or both. Mine was misdiagnosed as such for years and anti depressant drugs proved disastrous for me - I had severe akasthesia which took TWO YEARS to wear of enough that my day to day life was more bearable - and this after only two tablets...

    For alcoholism what is ironic is that treatment and rehabilitation programmes have been closing down all over the UK due to govt cuts and the service in my area, that my husband worked for was totally disbanded due to funding issues.

    The govt can't have it all ways...
     
  4. Sasha

    Sasha Fine, thank you

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    Definitely not! Definitely not!

    I can see a complete breakdown of trust developing - people lying to their doctors to say that they're complying with treatments that they view as dangerous/unacceptable when they're not.
     
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  5. A.B.

    A.B. Senior Member

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    Implying that recommended treatments by doctors are always right, and the patient is always wrong if they refuse.

    Also this goes against the idea of unconditional basic income which seems to be getting more and more supporters.
     
    Last edited: Jul 30, 2015
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  6. worldbackwards

    worldbackwards A unique snowflake

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    I wonder where this ends. Given the degree of patient blame generally involved in failed ME treatments ("you were not motivated to recover", etc), could behavioural compliance be linked to benefits as well? Hardly bears thinking about.
     
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  7. Sidereal

    Sidereal Senior Member

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    Extremely dangerous idea that violates basic principles of medical ethics.

    Not to mention the fact that highly touted Nobel Prize winning treatments of today can turn out to be universally acknowledged damaging lunatic quackery just a few years down the line. Think lobotomy.

    The medical profession has no idea what they're doing most of the time with their idiotic "treatments". Their reckless experiments should not be imposed on people under the threat of homelessness/starvation.
     
  8. mermaid

    mermaid Senior Member

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    Really this is just the thin end of the wedge re what is already happening with sick and disabled people in the DWP system. After all, people who are ill are being sanctioned for being unable to comply with what is being asked of them. Those who are mentally ill or learning disabled are especially vulnerable.

    I sometimes read the Rightsnet forum online (it's a forum for professionals who assist those with benefits issues in the UK), and read the other day of a woman who was on the assessment rate of ESA and attending a support group for sufferers of depression. She was having regular appointments with the DWP or one of their agents and was being pressured by them to reveal her notes from this group (ie her feelings etc) on pain of being sanctioned if she didn't have something to write on the computer. She had already been sanctioned once by them.

    So this is an example of where this kind of behaviour can lead. Linking treatment and the benefits system is going to lead to abuses and is in essence unethical in my opinion. Already we have a system (ESA/PIP) where people go like lambs to the slaughter to an assessment of their medical condition and see someone who may know nothing of their condition. If that applicant is unable to obtain decent medical evidence (and we know how hard that can be when GPs are busy and not willing to help) then it appears that they may not in fact be genuinely ill and their claim is often rejected.

    Thankfully I am now retired and no longer have to go through the system any more, but I used to notice the prominent box for listing medications on the ESA form as if that would be proof in itself that I was genuinely ill. At the time I was taking very little, having decided at that time to explore alternative routes such as acupuncture and herbal medicine. It used to worry me that I would not be taken seriously because I was not on heavy duty meds. Quite apart from the GET/CBT scenario with ME/CFS that could arise here, I can see a situation where people could be challenged to take more medications to dull their pain so that they could be booted into work, even if the person themselves had chosen to avoid certain meds due to their possible long term damage.
     
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  9. worldbackwards

    worldbackwards A unique snowflake

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    I suspect this won't happen. The worst of the DWP programme tends to happen covertly, especially the coercisive nature of the sanctions regime.

    This will be a huge row - the doctors have already made that clear, the head of the Health Select Committee Sarah Wollaston has condemned this hugely and I suspect that the libertarians in the Tory party will be waiting to get stuck into this as well.

    In many way though, what this comes down to is an attempt to put the kind of things they're already doing on a legal footing. The second sick/disabled people (and indeed the unemployed) fall into the WRAG/JSA axis, the claimant is already pretty much powerless.
     
    Last edited: Jul 30, 2015
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  10. AndyPandy

    AndyPandy Making the most of it

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    Disturbing.
     
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  11. Sean

    Sean Senior Member

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    Cannot overstate how concerned about and opposed I am to any such proposal. That way lies nothing but serious state sanctioned violence against sick, vulnerable, innocent individuals, and broader society in general.

    Kill it with fire.
     
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  12. lansbergen

    lansbergen Senior Member

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    Agree
     
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  13. charles shepherd

    charles shepherd Senior Member

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    Thanks to the Countess of Mar, the current situation here in the UK has been made very clear during a House of Lords debate

    Committee Stage of the Welfare Reform Bill - debate from Clause 9 onwards:
    Source: Hansard (House of Lords) 28th February 2007, column GC198:

    Countess of Mar: "If a group of people refuses graded exercise and cognitive behaviour therapy, on the basis either that they are afraid or that they know it will not help them, will they be penalised?"


    Lord McKenzie of Luton (Parliamentary Under-Secretary, Department for Work and Pensions; Labour Peer): "there is no requirement for individuals to carry out any specific type of activity or treatment. That cannot be sanctioned".
     
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  14. Yogi

    Yogi Senior Member

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    Is it just me or does Wessely appear very reasonable here?

    He appears to have a hypocritical stance here and with the way he and his cronies abuse those with ME/CFS. People with ME a neurological disease seem to be treated much much worse than obesity and alcoholism.

    He talks about "if a person has the mental capacity to make a decision not to consent to treatment, as nearly all will, which is then not respected, this is likely to be an unlawful trespass to the person involved"- what about Sophia Mirza (who's autopsy found dorsal root ganglionitis and was sectioned), Lyn Gilderdale (sectioned) or Katrina Hansen (who Michael Sharpe's colleague Per Fink is abusing).

    "The vital trust that exists between the patient and the health professional will surely diminish if the public starts to perceive the latter as the agents of state employment/welfare policy." - Eh like certain psychiatrists who advise for the DWP who funded the PACE trial?

    "And will it work? Probably not. The evidence suggests that, in general, positive incentives encourage positive behaviours and negative ones don’t. Far from reducing costs and freeing up resources (a perfectly legitimate goal) this is much more likely to waste resources by forcing people into treatments that they don’t want."
    - Does he not recognise that people with ME get worse by GET and CBT/GET and the PACE trial has wasted resources on treatments that don't work and make people worse and therefore they don’t want this treatment.

    "The GMC also tells doctors that they have a duty to ensure decisions are voluntary and warns that “patients may be put under pressure by employers, insurers, relatives or others, to accept a particular investigation or treatment. You should be aware of this and of other situations in which patients may be vulnerable.” There cannot be much doubt that this applies to anyone with a mental disorder or addiction problem facing the threat of losing their benefits."
    - He knows it is very difficult for insurers to force CBT/GET and therefore they came up with PACE to create evidence to force people into these "treatments" or lose benefits/insurance payments. So he recognises that those with mental disorders should not be forced into treatment but not those with neuroimmune disease of ME/CFS.

    "As Talleyrand said, “it is worse than a crime, it’s a blunder” - Sound like a good description of their psychologicalisation of ME over the last few decades.
     
  15. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    A psychiatrist well know to be interested in ME pointed out to me his concerns that there are virtually no trained therapists in the UK who are capable of delivering proper CBT for ME! So I think it would probably be pretty impossible to argue that the government could require patients to have CBT unless they were seeing Dr Trudi Chalder. I would certainly be prepared to assist with any legal challenge on the basis of violation of human rights. The truth is that there is no evidence for efficacy of CBT or GET that could justify patients being required to have such treatments.
     
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  16. JamBob

    JamBob Senior Member

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    Sarah Woolaston MP and GP did a BBC interview yesterday where she said that any doctors who went along with this would be in breach of medical ethics and GMC regulations. So even if the government tried to introduce this, I can't see how they would enforce it.

    I don't have much faith in Carol Black though - she has past form as a government mouthpiece.
     
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  17. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Whilst this dreadful idea may not get through legislation in the UK, I have been very concerned by developments elsewhere in the 'civilised' world with regard to vaccinations, with draconian legislation being introduced in Australia and the US with regard to vaccinations, including the removal of the rights of unvaccinated children to go to school!

    This page, especially the graph, showing the (in)efficacy of a range of treatments, should be shown to anyone who wants to argue for any coercion by health professionals.

    I have suffered numerous adverse effects from medical treatments, the worst being severe hyponatraemia (initially misdiagnosed as panic attack, and then as overhydration and overuse of desmopressin - all wrong), finally found to have been probably due to an ACE inhibitor. Misdiagnosis and incorrect treatment are extremely common. Just one of the many reasons why treatment must not become compulsory, and our rights must not become conditional on accepting it.
     
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  18. charles shepherd

    charles shepherd Senior Member

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  19. Sean

    Sean Senior Member

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    The graph from that link,

    [​IMG]
     
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  20. Valentijn

    Valentijn Senior Member

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    Isn't Lightening Process in the process of being trialed? When (not "if") they spin that in positive manner, anyone taking a 3-day course will be qualified to treat us.
     

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