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A guide to commissioning of MUS services across the UK healthcare system. M.E included.

Discussion in 'General ME/CFS News' started by anniekim, Feb 12, 2017.

  1. anniekim

    anniekim Senior Member

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  2. TiredSam

    TiredSam The wise nematode hibernates

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    Spot the BPS takeover. ME sufferers now have a functional somatic disorder and are not to be treated:

    .
    Far too much horrific drivel to choose a few quotes to comment on, it's just all dire.

    This is 2017 in the UK. And we are supposed to be worried about Donald Trump, health tourism and fake news.

    It explains @Countrygirl 's GP's recent change of attitude anyway.

    EDIT: Sorry, got Countrygirl's handle confused.
     
    Last edited: Feb 12, 2017
  3. sarah darwins

    sarah darwins I told you I was ill

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    It really beats me how this stuff can get propagated in official circles like this when they don't have a scrap of proof to back it up. MUS isn't even a thing, ffs. It's just a label.
     
    Cheshire, alex3619, Tyto alba and 8 others like this.
  4. user9876

    user9876 Senior Member

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    They have been making comments about harm caused by investigating symptoms for a long time. I'm pretty sure Wessely has written about that in the past. I just wonder how many patients they have killed and will kill by ignoring symptoms of acute disease that needs treating quickly. I remember a friend of my fathers who had 'stress headaches' who was eventually diagnosed with brain cancer or another friend who had aplastic anemia but whose symptoms were ignored by GPs for over a year as they told her to get some exercise.
     
  5. user9876

    user9876 Senior Member

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    The use of MUS represents one of the tricks this group play which is changing names and hence hiding what they are doing and trying to mislead patients. The research does not back up this advice and where it does it is dodgy. Until institutions such as QMUL and the Lancet are held financially accountable for their work they will carry on promoting these dodgy claims.
     
  6. sarah darwins

    sarah darwins I told you I was ill

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    UK Healthcare 2017

    Doctor: It's bad news, I'm afraid. You have MUS.
    Patient: Oh, no. That sounds bad. Are you sure? You haven't run any tests.
    Doctor: There's no test for MUS.
    Patient: But what if it's something else? Shouldn't you run some tests?
    Doctor: I can't run any tests because of your MUS.
     
    dangermouse, Cheshire, Joh and 19 others like this.
  7. TiredSam

    TiredSam The wise nematode hibernates

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    Commonly used my arse. A term recently coined as part of a re-branding exercise by the BPS school. Mind you, if they keep saying it's commonly / widely used, then it soon will be. Typical BPS technique - if you want something to be true, just keep repeating it until it becomes true.
     
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  8. TiredSam

    TiredSam The wise nematode hibernates

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    Excuse me for quoting myself, but I am actually very worried about health tourism. I'm worried about those who think they can just turn up at the NHS with nothing but a sense of their own entitlement and avail themselves of benefits that were intended for the treatment of UK patients and paid for by UK taxpayers. As a result of these self-serving greedy anti-social activities resources are being squandered and UK patients are going without treatment. The sooner the BPS school are thrown out of the NHS and sent packing back to where they came from, the better.
     
  9. trishrhymes

    trishrhymes Senior Member

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    Great idea @TiredSam , send anyone who speaks psychobabble back to psychobabbleland. It's located on the planet gobbledegook.
     
  10. TiredSam

    TiredSam The wise nematode hibernates

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    I wouldn't mind so much but when they turn up here speaking their own bloody language ...
     
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  11. Snow Leopard

    Snow Leopard Hibernating

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    They should rename it to "A guide to dismissing patients physical health complaints and making them someone else's problem".
     
  12. alex3619

    alex3619 Senior Member

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    Yes, but so is much of psychiatry. They are like obsessive doctors who have a label maker and want to put one on everyone. Then they pretend that naming something gives them understanding and power. I thought that went out with the practice of magic.
     
  13. lilpink

    lilpink Senior Member

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    from http://www.jcpmh.info/resource/guid...rvices-people-medically-unexplained-symptoms/


    This document is intended to give guidance to clinical commissioners. In it they state that:

    “On average, 52% of patients accessing outpatient services have MUS, with the highest rates relating to gynaecology clinics (66%) and the lowest rate (37%) relating to dental services 16. Table 2 outlines the proportion of people presenting with MUS across different outpatient clinics.”

    This is the table that they show:


    Table 2. Proportion of people with MUS in outpatient clinics


    Outpatient clinic

    Proportion of people with MUS

    Gynaecology

    66%

    Neurology

    62%

    Gastroenterology

    58%

    Cardiology

    53%

    Rheumatology

    45%

    Respiratory

    41%

    Dental

    37%

    Total *

    52%

    (of which 42% are men, 57% are women)


    * From a study of 550 patients

    Unsurprisingly they got this % outpatient data from the following 2001 paper (reference number 16) https://www.researchgate.net/public...an_epidemiological_study_in_seven_specialties


    Medically unexplained symptoms An epidemiological study in seven specialities

    Authors - Chaichana Nimnuan, Matthew Hotopf, Simon Wessely


    Looking at this study - Under Case definition


    “For this study, medically unexplained symptoms were defined as any current principal somatic complaint reported by patients for which no definite medical diagnosis could be found by physical examination and appropriate investigation. To make this judgement, we used investigation results and physicians' opinions. The physician's opinion was determined by the final diagnosis stated in the clinical case notes.”

    So they decided whether patients had MUS, not the actual physicians.


    Also importantly in the same paper it says in the Comment section -

    “This study has limitations. Firstly, the required sample size was not obtained due to the low response rate." And "Secondly, although we considered using the diagnosis stated in case notes 3 months after the initial visit as an improvement in defining medically unexplained symptoms, the final diagnosis is still subject to change afterwards. This may cause over diagnoses of medically unexplained symptoms which later may be reversed."

    Hardly a study to base national policy and financing of services on! Also note that gynaecology is top of their list and they say that 57% of the total are women (amusingly 1% are neither men or women!) There is however other published data where gynaecology is not top of the list, no subtle gender discrimination going on there then! –


    Prevalence of MUS in acute out patients in a London Teaching Hospital Clinic %

    •Gastroenterology 60%

    •Chest 59%

    •Rheumatology 58%

    •Gynaecology 57%

    •Cardiology 56%

    •Neurology 55%

    •Dental 49%

    Information taken from online document - “Complex patients” by Dr Alan Cohen FRCGP, “SAINSBURY CENTRE for MENTAL HEALTH, removing barriers, achieving change”


    There is no consistent % rate for women with MUS – it presumably varies so much according to how much women are being discriminated against in different settings! (Anything from 57% women up to 79% women, or “3 or 4 times as many women as men”, depending on which NHS MUS documents you read).
     
  14. RogerBlack

    RogerBlack Senior Member

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    Err...
    While I don't disagree that discrimination against women may in fact be real, there is also the fact that men may not present to the doctor with 'trivial' symptoms at the same rate, if they do occur. (symptoms of equal severity in men and women reflective of real disease that should in each case be investigated.)

    And many other possible confounders.
    (having said that, I would err on the side of the data being horribly systematically biased in ways that make actual occurrance rates in the population damn near impossible to find.

    The first abstract I find on the topic disagrees with me.
    https://www.ncbi.nlm.nih.gov/pubmed/1871991 I have not properly researched this, I thought I got the above from a sane source.
     
    Last edited: Feb 18, 2017
  15. Esther12

    Esther12 Senior Member

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    Thanks for pulling that out @lilpink - I wonder what we can do about all this.
     
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  16. lilpink

    lilpink Senior Member

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    In addition in the same document - http://www.jcpmh.info/resource/guid...rvices-people-medically-unexplained-symptoms/


    The document authors say (page 3) "Without appropriate treatment, outcomes for many patients with MUS are poor. While evidence-based treatments for patients with MUS exist, they are rarely available" They cite the following paper as the source of this information - reference number 3 -

    Frequent attenders with medically unexplained symptoms: service use and costs in secondary care

    STEVENREID, SIMONWESSELY, TIMCRAYFORD, MATTHEWHOTOPF

    The British Journal of Psychiatry Mar 2002, 180 (3) 248-253; DOI: 10.1192/bjp.180.3.248

    http://bjp.rcpsych.org/content/180/3/248


    Well in this paper the researchers DO ramble on about outcomes and treatments in the discussion part of their paper, citing other references, but this paper's findings were estimates of the service use and costs of frequent attenders with so-called MUS compared to other frequent attenders, and WERE NOT about whether outcomes for MUS patients were poor or whether treatments were rarely available. So this Guidance for Commissioners document is starting to look decidedly sloppy.


    BUT what the above cited study by Reid, Wessely et al did reveal .......interestingly..... was that there was no difference in MUS occurrence related to gender. And, lo and behold, they go on to say that:

    " The absence of a female excess in the somatising patients was unexpected given that this is a near-universal finding in studies of medically unexplained symptoms. This highlights the role that higher consultations rates in females may have as a confounding variable in such studies." !!!


    The JCPMH didn't bother to mention that in their document for clinical commissioners now though, did they?!
     
  17. lilpink

    lilpink Senior Member

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    It's hard to know. The UK media seem constrained on this don't they? It's probably yet another case of using our parliamentarians .. but we know how successful that can be. Dissemination of what is actually happening can't hurt. I wonder if particularly addressing the Royal Colleges whose reach might be curtailed by the MUS takeover is one route? IE: neurology and (from this data) gynaecology look ripe to be picked as the lowest hanging fruit. If neurologists and gynaecologists recognise that far from MUS / MUPS just being a nifty way to bump their heartsink patients off the list it might actually sound the death knell of many of their departments and personnel then their own self interest might be enough to kickstart a rebellion?
     
  18. user9876

    user9876 Senior Member

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    I think one problem is that policy makers and politicians don't like to challenge the 'scientific evidence' that they tend to believe is solid. A big issue here is that very few have a scientific background and hence don't know enough to challenge or don't know how dodgy clubs of people can subvert the scientific process.

    I wonder about people like oncologists. One concern about MUS diagnosies is that they treat people with chronic disease badly but another should be that they encourage GPs not to diagnose serious acute diseases such as cancer early - This MUS push is effectively a license for GPs to ignore symptoms they don't understand and avoid diagnosis. It may also encourage patients with treatable conditions to not go back to GPs (who tell them they are imagining their disease).
     
  19. lilpink

    lilpink Senior Member

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    Roger Black said

    Err...
    While I don't disagree that discrimination against women may in fact be real, there is also the fact that men may not present to the doctor with 'trivial' symptoms at the same rate, if they do occur. (symptoms of equal severity in men and women reflective of real disease that should in each case be investigated.)


    In http://www.jcpmh.info/good-services/medically-unexplained-symptoms/ on page 6 the authors say that "The risks or associated factors for MUS include being female, younger in age, and currently employed" . They cite reference number 18 for this statement.


    Except when you read that referenced paper -

    "Childhood risk factors for adults with medically unexplained symptoms: results from a national birth cohort study" by Hotopf M1, Mayou R, Wadsworth M, and Wessely S.
    ajp.psychiatryonline.org/doi/pdf/10.1176/ajp.156.11.1796


    then you discover that the study doesn't support their statement. The paper says that "Physical symptoms were slightly more common in women, but this difference was not significant."

    I cannot see any reference in the paper to risk factors concerning being younger in age, or currently employed. Perhaps the authors have referenced the wrong study here, but if they have, then they have unfortunately (for them) substituted another study that disproves their statement.


    They seem intent on creating a narrative in this document that it is pitiable neurotic women who predominate with symptoms of MUS, even though their own references say to the contrary. Perhaps this makes it easier to sell the somatising theory to doctors, male or female. They chose to use a single study that put gynaecology at the top of the MUS list with a 66% MUS rate when a different study put it in the middle of the table of specialisms. They chose to say that the other cited study showed a female predominance, even though the very small increase wasn't statistically significant. In my opinion this is deliberate manipulation to create that narrative.
     
  20. lilpink

    lilpink Senior Member

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    There is a self limiting element to this in as much that as more people who are misdiagnosed die from avoidable deaths they or their loved ones will increasingly turn their ire (in the legal sense) on primary care which is failing . Of course to reach the tipping point on this, great swathes of avoidable deaths will occur before the pattern is acknowledged.
     
    Countrygirl likes this.

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