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UK Dorset ME/CFS clinics

Discussion in 'UK clinics and doctors' started by Trish, Mar 3, 2023.

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  1. Trish

    Trish Moderator Staff Member

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    Dorset ME services

    I am starting this thread to find out whether there is any information on what's happening in my local area at present.

    I have not been in touch with the local services for over 10 years. Back then there was an outpatient clinic based at Wareham hospital run by OT's. All they offered was what I would describe as ineffective diary keeping and pacing-up style advice, and suggestions to try relaxation and/or meditation CD's.

    The service at the centre was in groups who were basically lectured at and given homework, with a bit of discussion, but no real help on what to do with your activity diary. They also provided home visits for those with severe ME. We tried that, but it was just the same OT's chatting about the same diaries, pacing up and CD's. They had no understanding of severe ME.

    There was no linking to the other sort of OT's who advise on or help obtain equipment or adaptations. As far as I remember this wasn't even mentioned.

    I cut all ties with them when, at my last visit from the OT, she was enthusing about learning about LP from a local LP person who had invited her to sessions.

    I have seen since some awful 'research' they were doing on a totally unsuitable sort of group therapy with severely affected patients. We have a thread on it here somewhere, I'll try to find it and link it.

    The local support group was and I think is still quite active, and I went along a few times to the coffee mornings at a local cafe over 15 years ago. I didn't find them congenial - they were led by someone employed by the local group, but she made no effort to include new people, and spent the whole time chatting to people she already knew about her own non ME related health problems.

    The local group has a website. They used to have an annual lecture, I don't know whether they have since covid. The most recent one I saw them enthusiastically reporting on was someone from the Optimum Health Clinic, a private London clinic which does nutritional advice and LP-like therapy. (we have a thread on them)

    I have also seen somewhere that the local clinic employs someone part time who specialises in NLP (neurolinguistic programming - quack psychological therapy used in LP). Edit: See post #3 below.

    So my conclusion is that the local services and support group have gone off at tangents into quackery.

    I think it's time I learned more about what they are doing now, and what the plans are to implement the NICE guideline properly.

    So my first move is to ask anyone else here whether you have more up to date information or experience of the Dorset ME/CFS services.

    Meanwhile, I'll try to find out more online.
     
    Last edited: Mar 3, 2023
    Trish, Mar 3, 2023
    #1
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  2. Trish

    Trish Moderator Staff Member

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    Location:
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    Here's a job ad from September 2022

    https://healthjobs.bmj.com/job/61914/b7-specialist-cfs-me-occupational-therapist/
    B7 Specialist CFS/ME Occupational Therapist
    Employer
    Dorset HealthCare University NHS Foundation Trust
    Location
    Wareham
    Salary
    £24,995 to £28,603 a year p.a.
    Closing date
    4 Nov 2022
    We are looking for a dynamic and motivated Occupational Therapist to join our Chronic Fatigue Syndrome/ME Service for 22.5 hours per week

    This is an exciting development opportunity for an experienced OT to work in a specialist service supported by a small but close knit team who are specialists in this field. If this is of interest to you please do get in touch.

    The current base is Wareham Hospital but some work can be done virtually/home based and we are open to discussion around this balance with the right applicant.

    Main duties of the job

    To provide high quality person centred care to adults diagnosed with CFS/ME in Dorset, using advanced clinical knowledge that is evidence based. To undertake independent assessment, management, intervention and review with these individuals (incorporating pharmacological considerations, where appropriate) making complex clinical decisions regarding intervention and clinical outcomes.

    About us

    [deleted section about Dorset NHS]

    Job description Job responsibilities

    For the main duties and responsibilities for this role please read the attached job description and person specification. When completing your application please ensure your supporting statement reflects the criteria set out in these documents by showing how your experience and skills apply to this post.

    Person Specification Experience Essential
    • at least 2 years experience in working with Long Term Condition
    Desirable
    • Knowledge of CFS/ME NICE guideline
    Knowledge Essential
    • complex case management knowledge
    Desirable
    • Knowledge of national CFS/ME support groups
    Supervision Essential
    • experience of staff and student supervision
    Desirable
    • Learning and Assessing in Practice Qualification or equivalent practice assessors training
    Clinical Essential
    • evidence of capacity to assimilate information in order to make a clinical judgement regarding diagnosis and intervention.
    Desirable
    • evidence of clinical reasoning skills
     
    Trish, Mar 3, 2023
    #2
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  3. Trish

    Trish Moderator Staff Member

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    From BACME website, August 2022:

    BACME Board Member Charlotte Adler Specialist Occupational Therapist BHSc Hons) Occupational Therapy, MRCOT, MBACME Charlie brings over 20 years’ experience in fatigue management and vocational rehabilitation to her role as trustee for BACME. She has worked in the field of CFS/ME in the NHS and in New Zealand in a mental health setting. She currently works part-time for the Dorset CFS/ME Service. Her particular interests are in helping to support people with poor sleep, anxiety and fatigue, and those who would like to return to work. She is a trained NLP practitioner and also uses mindfulness and relaxation techniques. She helps facilitate change in individuals, encouraging recovery and believing each person has the resources to succeed.

    https://www.s4me.info/threads/unite...clinicians-in-me-cfs.7900/page-11#post-432009
     
    Trish, Mar 3, 2023
    #3
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  4. Trish

    Trish Moderator Staff Member

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    From Graham's research on whether local services follow up patients:
     
    Trish, Mar 3, 2023
    #4
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  5. Trish

    Trish Moderator Staff Member

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    From the Dorset ME support group website:

     
    Trish, Mar 3, 2023
    #5
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  6. Shadrach Loom

    Shadrach Loom Senior Member (Voting Rights)

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    That knowledge is presumably assessed by someone who misnames the NICE ME/CFS guidelines as CFS/ME.

    It’s always going to be a postcode lottery, but small counties are at a distinct disadvantage for specialist services.
     
    Shadrach Loom, Mar 3, 2023
    #6
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  7. Trish

    Trish Moderator Staff Member

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    I think this was the 'research' I remembered as involving the Dorset people, discussed in a thread from 2017:
    Co-creating recovery in CFS/ME: A reflexive exploration of a Rebuilding your Life programme

    It says it was done in Oxford, but several of the authors are Dorset based, including Dr Selwyn Richards, who as far as know was/is the doctor who does the diagnosis (since my time) and Michelle Selby who leads/led the OT team. She was the one we saw and who was getting interested in LP 12 years ago.
     
    Trish, Mar 3, 2023
    #7
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  8. Trish

    Trish Moderator Staff Member

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    Way back in my early days of illness, I think in the 1990's, the Dorset support group was set up by some good people and I think the MEA was involved in helping get the Wareham clinic set up. Back then it was quite good in the sense that they focused on their version of pacing rather than going full GET/CBT, and it was run by OT's rather than psychs.

    But by the time we were in contact, their version of pacing was very much based on find your baseline using a diary then start adding new activities each week, and I don't recall any warning about staying within your capacity, though it was a a long time ago.
     
    Trish, Mar 3, 2023
    #8
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  9. Trish

    Trish Moderator Staff Member

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    From back before the new NICE Guideline, here's a post with a link to a document summarising the Dorset ME service:
    https://www.s4me.info/threads/new-m...ent-05-february-2020.13499/page-3#post-235114
    And a link to the document:
    https://www.dorsetccg.nhs.uk/Downlo...e/02_GMS_0011 ME formally Chronic Fatigue.pdf

    Note that there was is a strong link with the NLP stuff:
     
    Trish, Mar 3, 2023
    #9
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  10. Trish

    Trish Moderator Staff Member

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    Looking for more up to date information.

    Dorset NHS Healthcare University
    NHS Foundation Trust
    From a link on that website headed 'Useful Resources'

     
    Trish, Mar 3, 2023
    #10
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  11. bobbler

    bobbler Senior Member (Voting Rights)

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    Ugggghh from a link to find out what this 'model' is: https://performancepartnership.com/nlp-communication-model/ - "The problem is never the external event. It’s the internal representation of that event. " - I struggle to think of anything more sinister and damaging it is just narcissistic opportunism if used towards those who are vulernable, ill, bullied, in horrible situations.These idiots are training people to invalidate at the same time as not helping such people and being therefre less bothered about feeling responsible for consequences of bad situations they create.

    "Perception is Projection .......... So if we change our filters, release our negative memories, delete our limiting beliefs we can get different results."

    "Memories are fragile. Police forces know it. They know they’ll get 30 different witness reports of an event because each of those people filter the event differently. They also know when they go back 6 months later, those same witnesses will all give a different report – and will swear the one they give today is the right one! You can’t remember something as a seven-year-old because you’re remembering it as an adult. Just your memory alone changes the way you feel, which changes the memory."

    What a load of unevidenced nonsense. Police seek witnesses. If memory was that terrible as NLP seems to have to believe for their idea to work the whole justice system wouldn't work how it does. LOftus & LOftus has some work on eyewitness testimony (famous) and noone ever claims every single witness in every situation is 100% perfect but to pretend 30 different people give different accounts because of 'their filter' in memory is nonsense. You certainly shouldn't go using this fake claim as an excuse to manipulate people's memories

    It's almost a parody - I don't think of this there isn't a sentence that isn't the exact opposite of factually correct ie everything this service does and thinks seems 'deluded' - is there another term that encapsulates more politely to be completely getting the wrong end of the stick from every, single, angle.

    goodness knows how they derived insights from recovered people - a contradiction in terms in all ways if they use NLP (ergo don't hear) and only from 'recovered'?

    As if NLP makes communication easier. I have real concerns about scam, dodgy mind-bender schemes and how many people I know have got into them of recent years (part pandemic, part I think their jobs or seeking 'extra cash'). It really changes them - one became an aggressive unkind approach with no idea that is what she is 'because she still does it with a smile' whilst muttering the weird 'I'm not going to let others steal my happiness' when describing things that in old times would involve 'feedback opportunities' that maybe you might hurt someone or be unkind. I just find the fact that those in charge are doing nothing to stop this happenning really disturbing actually.

    And it certainly seems almost designed to remove all empathy from any communication chain (the most key skill underlining being able to do any of those jobs) which would turn into basically treating people like objects you assume are deluded and whose 'reactions' to your behaviour are 'maleable' because 'the world can be what you want it when reality doesn't constrict you anymore, as you can now claim everyone else's is 'filtered''. Can you imagine trying to work with something/someone programmed to have that attitude in any arena if you were on the receiving end?
     
    bobbler, Mar 3, 2023
    #11
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  12. Trish

    Trish Moderator Staff Member

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    Children and Young People's ME/Chronic Fatigue Syndrome (ME/CFS) Service

    From a link on that page:


    There are also links to documents:
    Activity diary
    Helping you recover: rest and relaxation
    This includes:
    Helping you recover: sleep
    Which recommends cutting out daytime sleeping, 'you need no more sleep than your friends' and all the usual sleep hygiene stuff.
     
    Last edited: Mar 3, 2023
    Trish, Mar 3, 2023
    #12
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  13. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    First off they should at the very least change the disease name to ME/CFS. Although, "CFS" is a misleading, stigmatising, loathsome term that should be eliminated forever!
     
    DokaGirl, Mar 3, 2023
    #13
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  14. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    @Trish
    What trying experiences to go through.

    Amazing, and yet maybe not, how people with what I hope are science based degrees, can fall for the clap-trap of the LP.

    Show me the proof!
     
    DokaGirl, Mar 3, 2023
    #14
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  15. Adrian

    Adrian Administrator Staff Member

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    I wonder if they are aware of the new guidelines?
     
    Adrian, Mar 3, 2023
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  16. Trish

    Trish Moderator Staff Member

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    The NHS page links to the current guideline in its useful resources.
     
    Trish, Mar 3, 2023
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  17. hellytheelephant

    hellytheelephant Senior Member (Voting Rights)

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    Thank you so much for finding and collating all this info @Trish
    My Gp offered me a referral several years ago, but said she didn' t think I would get much from it.
    Nothing would induce me!
     
    hellytheelephant, Mar 4, 2023
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  18. chillier

    chillier Senior Member (Voting Rights)

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    Moved posts

    Ah I see. The Wareham clinic is the other NHS clinic I have been to more recently - about 5 years ago after a huge relapse. When I went it wasn't group sessions but 2 initial consultations with a doctor and then one on one sessions over multiple months with an occupational therapist. The doctor was poor and when I asked him about some neurological symptoms his explanation was that everyone has those symptoms but people with ME are more tuned into them. The occupational therapist was quite good in the sense she actually listened to me and treated me with respect.

    The approach though was still based on a gradual increase in exercise but only based on what I could tolerate. I did get gradually better. The problem came when I would get a random relapse or dip, and as per their advice try and continue with the same level of activity. By the time I had a relapse bad enough that continuing activity at the same level rapidly accelerated my further deterioration - I was already discharged. So in the end this sort of softened version of GET caused me enormous harm.

    From their perspective they would have seen an increase in activity and an increase in energy and concluded that the former caused the latter, when the direction of causality is the other way around. They never saw the catastrophic relapse that happened later and so in their books I'd probably be down as a 'success' story. I can kind of see how these services have misled themselves into thinking that they're doing good.
     
    Last edited by a moderator: Dec 1, 2023
    chillier, Dec 1, 2023
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  19. Trish

    Trish Moderator Staff Member

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    Thank you for sharing your experience, @chillier. I'm sorry to hear you were harmed. I think they need to be told about this. They need to understand the harm they are causing with this approach.
     
    Trish, Dec 1, 2023
    #19
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