Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

(UK) Leeds In-Patient Unit - urgent request for feedback from 25% ME Group

Discussion in 'General ME/CFS News' started by Dolphin, Sep 15, 2015.

  1. Dolphin

    Dolphin Senior Member

    Messages:
    10,574
    Likes:
    27,628
    From: Helen Brownlie, advocacy worker, 25% ME Group

    ---
    Extra info from Helen:

     
    Last edited: Sep 15, 2015
    sarah darwins likes this.
  2. Maria1

    Maria1 Senior Member

    Messages:
    110
    Likes:
    329
    UK
    I have experience of the Leeds CFS service, which I understand runs the inpatient unit. However, I have no experience of being an inpatient.

    I just want to urge caution as I was pulled through some rather confusing politics when I was an outpatient. Some of the NHS staff who were involved in setting up the Leeds CFS service now work for (I think one of the OT's may own) a private fatigue clinic. The private clinic pushes it's work through the local M.E. group. The local M.E. group has nothing good to say about the NHS service but it's actually not that bad. I found the NHS clinic helpful in accepting my illness and learning about pacing, also dealing with other people's expectations and being kind to myself. It also ran a mindfulness group. I know that these are the same staff who run the inpatient unit so I can't believe their approach will be drastically oppositional to that in people with severe ME? (I think they diagnosed me as moderate to severe)

    I found that the Leeds ME group has only bad stuff to say about the NHS service which is free, and only good things to say about the private clinic, which is off limits for most people due to cost. This doesn't sit at all well with me.

    I had positive and negative experiences of the NHS clinic. I didn't attend the private clinic but paid privately to see the consultant physician who works there. He gave me a leaflet for the private fatigue clinic during my consultation.

    The private fatigue clinic wants to get the NHS contracts and wastes no time in trashing the NHS service.

    Sorry it's a bit off the topic but I felt it important to say these things.
     
    Last edited: Sep 15, 2015
    Bob and justy like this.
  3. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Messages:
    681
    Likes:
    2,188
    Page 3 of the LEEDS CFS SERVICE NHS June 2014 newsletter has a lady standing next to a board that says:

    ACCEPT
    ADJUST
    BELIEVE
    ACHIEVE


    I wonder if this CBT for alleged neurotic belief in an infection or autoimmune disease (BPS theory CFS) will have the same immunomodulatory affect as IV Rituximab or Methotrexate for the autoimmune disease in ME?

    Sadly, for Jobsworths in the NHS, the news ME is an autoimmune disease will illicit the need to visit a psychiatrist which might evoke a fatigue in themselves.

    Still, as long as it's legal at the moment, I don't see the harm in it. It's only been 46 years this has been going on in the UK and at least 250,000 - 1,000,000 are affected by now, maybe more.

    So only a few 100,000 misdiagnosed with psych CFS in the UK, trapped in their homes for life, who never respond to psycho rehabilitation (as they don't have a psych fatigue disorder). So a minor issue. What's hundreds of thousands of ruined lives anyway in a plutocracy? Nothing.

    I'm sure it's all harmless managing ME as psych F48.0 chronic fatigue, just like telling diabetics to drink coca cola to reduce symptoms.

    Just remember to ACCEPT , ADJUST , BELIEVE, ACHIEVE without any proven treatment modality on the market, and you'll be so much better.

    No wonder the LEEDS service is such a resounding success.

     
  4. Maria1

    Maria1 Senior Member

    Messages:
    110
    Likes:
    329
    UK
    I find it sad that human beings lash out and trash things with so little evidence. You want to trash something so you find evidence that fits with your agenda.

    The CBT approach I received was about accepting my own limitations, because in doing so, I learnt to pace myself rather than constantly pushing myself past my limits.

    I was diagnosed using the Fukuda criteria; they thought my illness was probably triggered by an episode of anaemia. The Leeds service helped me accept that CFS/ME or ME/CFS is a real illness, certainly not the other way round!

    Yes, it sits within the psychiatric service and that isn't at all helpful, but the staff I worked with understood that. The NHS has many, many problems. People who work within it are underpaid and under appreciated. Calling them jobsworths is really unhelpful.
     
  5. mermaid

    mermaid Senior Member

    Messages:
    581
    Likes:
    1,048
    Cornwall, UK
    There is a thread on here somewhere about the Leeds service from a couple of years ago as I remember I contributed to it. I will do a search in a minute and see if I can find it (though there may be others of course) and people come and go from PR.

    I used to write to and help (with benefits applications) a woman who stayed in the inpatient unit there and she was not happy with the pressure she felt she was put under there to increase what she was doing too quickly (she was almost bedbound) and she also was upset that her diagnosis of CFS/ME was changed to MUPS while there. However as that is all 2nd hand it's not suitable for the 25% group, and I have lost touch with her now also.
     
    SOC, sarah darwins, Bob and 2 others like this.
  6. Bob

    Bob

    Messages:
    9,846
    Likes:
    33,923
    England (south coast)
    Hi Maria, it's interesting to read your experiences of the outpatient clinic, and I'm glad to hear that your experiences were broadly positive, and that the staff were kind. When I attended my local NHS service, I found the staff were really nice, sympathetic and kind as well. They were flexible in their attitude, and accepted that their treatment (a group CBT/GET course) wouldn't be helpful or appropriate for everyone, which was good because I found the course useless. They were sympathetic when I dropped out and told them that GET wasn't suitable for my lifestyle and didn't make any sense to me. (I already successfully managed my activity levels and symptoms with a pacing technique.)

    I think perhaps the reason why @Research 1st reacted negatively to the NHS literature is because of the words 'believe' and 'achieve'. It suggests that, with a positive attitude, you can overcome your illness, which suggests they are treating a psychosomatic illness. What happens if you are too ill to have a positive attitude or if you manage a positive attitude but you don't recover but continue to be severely ill? Does that means it's your fault that you are ill? i.e. that you haven't tried hard enough, or you don't have the right attitude, to get well? Are they suggesting that the only way to improve is to have a positive attitude? It feels like an attack on our character rather than a therapeutic, constructive, empathic or knowledgeable approach to treatment.

    I notice that the newsletter mentions some biomedical research that is taking place in the local hospital, in relation to immune cells for people with post-viral symptoms, which suggests the local clinicians are open minded about the cause of CFS/ME.

    But the newsletter also has a half page where one of the therapists discusses her therapists' training session with a well-known GET trainer. In the article, she asserts that GET should be focused not on pacing but on incrementally increasing exercise levels, whatever your state of health, and irrespective of fluctuating symptoms. Well, as we know, this is an inappropriate, ignorant and dangerous approach to 'treating' ME.

    So, yes, credit should be paid to the caring nature of the team, but I don't think we should overlook any ignorant, abusive or dangerous approaches to treatment. Kind people can do harm when acting with best intentions, if they are misinformed and applying ignorant and harmful techniques. It's the system that is being criticised rather than the individual staff.

    You say that the staff are sensitive, and their treatment literature suggests that their approach to treatment is fairly flexible, so I hope they have the same sort of attitude that my local clinic had, whereby they accept that there is no one-size-fits-all approach to treating ME/CFS, and that CBT/GET aren't suitable for everyone. The NHS approach to treating ME is pathetic and inappropriate, but at least a sensitive, kind, flexible and empathic approach can minimise damage.
     
    Last edited: Sep 17, 2015
    PhoenixDown, alkt, Woolie and 9 others like this.
  7. Valentijn

    Valentijn The Diabolic Logic

    Messages:
    14,104
    Likes:
    44,045
    http://forums.phoenixrising.me/inde...kshire-cfs-me-clinic.36125/page-2#post-570915
    http://forums.phoenixrising.me/inde...kshire-cfs-me-clinic.36125/page-2#post-570953
    http://forums.phoenixrising.me/inde...kshire-cfs-me-clinic.36125/page-2#post-570994
    http://forums.phoenixrising.me/inde...kshire-cfs-me-clinic.36125/page-3#post-571224
    Maybe @mermaid @themjay and @potbatch can direct the people they've heard of who have gone there to this thread, and/or put them in touch with @Dolphin .

    But more importantly, I think the clinic needs to put up or shut up. Their claims far exceed even the spin from PACE, which means they are probably lying through their teeth, or are themselves severely deluded.

    They identify ME/CFS under the supposed ICD-10 code for "F48.0 = Fatigue syndrome (CFS/ME)" in the psych section, so they are not even talking about ME, which is IDC-10 G93.3. And they are even abusing the F48 section, which is titled "Other nonpsychotic mental disorders" and is not itself allowable for coding purposes - doctors should be choosing a subsection.

    It also sounds like (even in their own yearly report), that they exclude people from their data via re-diagnosis.
     
    Roy S, alkt, Woolie and 8 others like this.
  8. justy

    justy Senior Member

    Messages:
    5,132
    Likes:
    11,078
    U.K
  9. K22

    K22

    Messages:
    92
    Likes:
    375
    I don't have any first hand experience but also faced pressure to attend.

    As far as I know it is just 2 beds for ME, the others are, I think, for people with psychosomatic illness or have mental health illness on top of other physical illness. It's a psychiatric ward which is an issue immediately to me as there's a huge difference between physical & mental suffering & appropriate care.

    Someone in charities should be visiting & monitoring this ward as part of their severe m.e representation, just as they travel around attending events & giving talks. If dr shepherd visited it personally he could assess it & advise us as to what is offered etc. Theres a breakdown in connection with the community, patient orgs and this , the only inpatient severe service on the NHS. They should be informed by us & we shouldn't be in the dark about them.

    Anecdotally I've heard of a husband of a wife who was on their long waiting list who'd been told by former attendees they weren't good with issues such as light sensitivity. From my point of view it might be ok for the upper-severe inclined to attempt rehab - unfortunately as it's still quite an unknown it is being pushed on people very sick, struggling with the basics of life who have no idea if they will get appropriate medical support & just care or will be expected to make progress via a form of cbt/get when in there, with all the risks that brings.
     
    alkt, Woolie, Hutan and 4 others like this.
  10. Bob

    Bob

    Messages:
    9,846
    Likes:
    33,923
    England (south coast)
    Certainly nothing wrong with resting for a few weeks, for someone with severe ME; that part of the therapy seems quite sensible to me.

    But i wonder what sort of drugs they use? Antidepressants or sedatives? And what is the evidence basis for using such drugs? Or perhaps they use gabapentin?

    And then they 'exercise' people till they get better? What's that all about? (Rhetorical question.)
    This is what another well-known (paediatric) clinician is said to do, and I find it a sinister and corrupt practice in the extreme, for so many reasons. The NHS should come down upon the practice like a ton of bricks.
     
    Last edited: Sep 16, 2015
    alkt, Woolie, SOC and 3 others like this.
  11. K22

    K22

    Messages:
    92
    Likes:
    375
    Most people with severe m.e are resting most of the time and very sensitive to drugs. Drugging them & then expected bodies to rally seems very naive to me.
     
    alkt, Valentijn, justy and 4 others like this.
  12. Maria1

    Maria1 Senior Member

    Messages:
    110
    Likes:
    329
    UK
    I'm not suggesting we should overlook any ignorant, abusive and dangerous approaches to treatment, and I didn't mean to imply so. I just ask for a balanced and evidenced approach from PWME as well as the medical staff. People with ME ask for the people treating them to act on the evidence; we should do so also.

    There are bad and less well informed practitioners in many services. I believe the way to change things is to work with them, point out what's wrong but acknowledge what's right and helpful.

    If people are being forcibly drugged and they are threatened with having their children taken away that is illegal and needs addressing under the proper process.
     
  13. Sean

    Sean Senior Member

    Messages:
    3,189
    Likes:
    17,386
    Charlatans, and very dangerous. Stay as far away from them as you can.
     
    SOC, Valentijn, justy and 1 other person like this.
  14. sarah darwins

    sarah darwins I told you I was ill

    Messages:
    2,415
    Likes:
    10,009
    Cornwall, UK
    Unfortunately, I don't think that is illegal. And such matters, if they do ever reach legal process, are generally dealt with in closed session family courts which, some people suggest, give far too much credence to unsupported testimony of 'officials'.
     
    alkt, SOC, Valentijn and 3 others like this.
  15. wastwater

    wastwater Senior Member

    Messages:
    861
    Likes:
    489
    uk
    I went for an assessment at leeds cfs service,it wasn't what I thought it was going to be at all.I thought they would be involved in more research but there not so I decided to research it myself.
     
    alkt likes this.
  16. Maria1

    Maria1 Senior Member

    Messages:
    110
    Likes:
    329
    UK
    You need to be sectioned under the Mental Health Act to be forcibly drugged. I don't think the system is perfect but, as you say, the removal of children is dealt with by family court processes, not just by people acting on a whim. In my experience of Social Care in this country the removal of children is not something that is ever taken lightly, and tends to be avoided at all costs.

    If there is substantive evidence that this has happened, a complaint should be pursued.
     
  17. sarah darwins

    sarah darwins I told you I was ill

    Messages:
    2,415
    Likes:
    10,009
    Cornwall, UK
    I suspect you were replying to me (hard to be sure if you don't click reply). I was referring only to the part I quoted — the threat of taking children away. The point I was making was that anyone can make this threat or implication. That may be unethical but it's not illegal. There is a discretionary element to child protection orders which creates a lot of space for abuse. If someone is told that they might lose their children if they don't accept specific treatment, it hardly matters if there is legal force behind the threat. The threat itself is likely to be enough. And of course in such cases "a complaint should be persued", but that's ideal world stuff. Many people are not well equipped to contest these things, including many people with ME.
     
    alkt, Woolie, SOC and 5 others like this.
  18. Wildcat

    Wildcat

    Messages:
    1,424
    Likes:
    3,656
    .
    @maria wrote: "I don't think the system is perfect but, as you say, the removal of children is dealt with by family court processes, not just by people acting on a whim. In my experience of Social Care in this country the removal of children is not something that is ever taken lightly, and tends to be avoided at all costs.
    If there is substantive evidence that this has happened, a complaint should be pursued."



    ~~~~~~~~~~~~~~~~


    The Tymes Trust charity for children with ME has for decades publicised, educated about, and fought for children with ME and their families who are wrongly investigated by the child protection services. That is not a rare occurence.


    http://www.tymestrust.org/pdfs/falseallegations.pdf
    'False Allegation Of Child Abuse in Myalgic Encephalomyelitis (ME)'
    Jane Colby FRSA
    Executive Director, Tymes Trust

    First published in the peer reviewed Journal Argument and Critique, July 2014
    http://www.argumentcritique.com/publications.html

    'For some time, the All Party Parliamentary Group on ME (2010) has expressed concern that “Some children with M.E. and their families are caught up in unnecessary, damaging and distressing child protection conferences and care proceedings because there is misunderstanding about M.E. amongst teachers, social workers, health workers and other
    professionals.”

    ME is poorly understood and misunderstandings abound.

    “Myalgic encephalomyelitis has not uncommonly been mistaken for school phobia, anorexia nervosa, neglect, child abuse, Munchausen syndrome by proxy (fabricated or induced illness) or pervasive refusal syndrome.” (Colby, 2007).

    The Service Users Joint Statement reports that the mis-use of Child Protection powers to remove children with ME from their homes and families is likely to produce a crisis of health and social impacts. It can impact negatively on the children themselves, their families, other professionals who are working with the children and indeed more broadly on the wider community (Wrennall et al, 2003). ‘


    ~~~~~~~~~~~~~~~~~~~~~



    The Tymes Trust 2001:
    http://www.tymestrust.org/pdfs/theforgottenchildren.pdf

    ‘The Forgotten children: A dossier of shame’

    ‘In particular, we know that Child Protection issues have arisen in a number of cases out of the misconception that parents are neglecting or intentionally damaging their children.’

    When the BBC Panorama programme investigated this phenomenon in 1999 Jane Colby, who had by then worked with all the major ME charities and who is now our Executive Director , carried out a survey with the BBC.

    The statistics revealed that:

    • 59% of families were told by doctors that their children’s illness was caused by psychological problems – this seems to indicate a clear misunderstanding by doctors of the nature of ME

    • 15% of families were told that it was their own psychological problems that were causing the child’s illness

    • 5% had undergone psychological treatment and their parents all reported it either had no effect or made their children worse


    Two of the most disturbing statistics were:

    • 4% of parents had been branded with the condition Munchausen’s Syndrome by Proxy, in which a person harms another in order to gain attention.

    This syndrome was always a controversial diagnosis and has since been renamed; many doctors dispute that it exists at all as a separate entity from child abuse National statistics at that time showed that Munchausen’s Syndrome by Proxy affected just one in 100,000 families.

    • 7% of children from families questioned had been subject to child protection proceedings; court proceedings had either been threatened or carried out

    If representative, this implies that 7 out of every 100 children with ME will be threatened with being taken away from their parents.’


    ~~~~~~~~~~~~~~~~~~



    http://www.tymestrust.org/pdfs/childprotectionissues.pdf

    Child Protection Issues: A Presentation to the All Party Parliamentary Group on ME

    Jane Colby
    Former Headteacher
    Executive Director, Tymes Trust

    Joanna Smith
    Welfare Rights Advisor, Brunel University

    On 2nd July 2008, Jane Colby and Joanna Smith gave presentations by invitation of the All Party Parliamentary Group on ME on Child Protection Issues, covering Child Protection procedures and recommendations, misunderstandings over parental or carer influence, and the personal experiences of a parent of a Tymes Trust member.
     
    Last edited: Sep 16, 2015
    Roy S, alkt, Woolie and 3 others like this.
  19. justy

    justy Senior Member

    Messages:
    5,132
    Likes:
    11,078
    U.K
    There are people with severe M.E in this country and abroad who HAVE been sectioned under the mental health act and forcibly drugged with antipsychotics etc. If they do not agree to continue their use once at home then they are threatened with re admittance. There is no recourse to law for these people - they are completely unable to help themselves and unless they have VERY dedicated parents or carers who is going to help them? Sophia Mirza's mother was a nurse and very well informed, but even she was unable to stop her daughter from being forcibly admitted to a psychiatric hospital.

    We are not talking about the moderately mild and mildly affected here who can get themselves to an outpatient clinic and maybe have some emotional help from supportive staff, but the very very sickest among us who are extremely bvulnerable to abuse and continue to be abused throughout the world.
     
    alkt, Woolie, SOC and 5 others like this.
  20. Dolphin

    Dolphin Senior Member

    Messages:
    10,574
    Likes:
    27,628
    Valentijn likes this.

See more popular forum discussions.

Share This Page