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ME/CFS services in the United Kingdom

Discussion in 'UK clinics and doctors' started by Hutan, Nov 2, 2017.

  1. rvallee

    rvallee Senior Member (Voting Rights)

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    Location:
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    They seem to be uniquely incompetent each in their own way.

    But basically a free-for-all with no oversight and zero standardization besides the it's-psychological-but-we'll-lie-about-that.

    The weird thing is that it's happening amidst politics of austerity. So while there are huge efforts going on to cut services as much as possible, money is being wasted blindly and specifically on being more harmful than simply providing nothing. Now that's some serious dedication.
     
  2. JemPD

    JemPD Senior Member (Voting Rights)

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    How disingenuous.... presenting it as that way around...…. it's only when you get properly in their clutches that you'll find out they really mean how these areas of your life affect (cause) the CFS/ME symptoms.... not the other way around.
     
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    9,574
    Location:
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    Another ad for physio job at Royal free;
    http://jobs.royalfree.nhs.uk/job/UK...on_Trust/Physiotherapy/Physiotherapy-v2006560

    Job description:
    GET Specialist Physiotherapist / Exercise Physiologist, The Fatigue Service
    @PhysiosforME
     
  4. rvallee

    rvallee Senior Member (Voting Rights)

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    Assessment of medical presentations and co-morbidities is not at all the remit of a physical therapist. This is a clown show. If the clown was Pennywise.
     
    Wits_End, Annamaria, JemPD and 2 others like this.
  5. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

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  6. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    Location:
    North-West England
  7. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    It's strange. I asked my GP about the service I would be referred to, having had an idea already, and he came back saying one didn't exist. I now see this service is still going. Wonder why/how he missed it...
     
    ladycatlover, Andy and alktipping like this.
  8. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Often GPs don't know. The clinics aren't always well advertised.
     
  9. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    I'd have thought they would have a system that directs the referral. Then again, this is the NHS and that would be far too easy!
     
    ladycatlover, ukxmrv, Andy and 4 others like this.
  10. Trish

    Trish Moderator Staff Member

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    51,872
    Location:
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    Maybe your GP's practice have a policy of not referring to that clinic - to save money or because feedback from patients tells them it's useless.
     
  11. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
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    Location:
    UK West Midlands
    Well it’s complicated by the introduction of IAPT and different arrangements in different parts of the country there is still a service that’s supposed to cover CFS in my area but it’s part of the community pain service and the CFS clinic was closed about 18 months ago but was still doing “courses” for people on the waiting list for a few months. Must be difficult for GPs to keep up with reorganisations.
     
  12. Simbindi

    Simbindi Senior Member (Voting Rights)

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    They should be able to look on up 'E-referral' which services are 'routinely commissioned' by your local CCG (Clinical Commissioning Group). The software should also highlight to them the criteria a patient needs to have met to be eligible for referral.

    You can also enquire directly to your CCG about which (if any) CFS/ME services they commission.
     
  13. Simbindi

    Simbindi Senior Member (Voting Rights)

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  14. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    I don't think that's the case. My GP would have been honest. I think it's because the provision has recently been changed. They like to pass the ME/CFS services around and regroup them etc. It drives me nuts, and yes, probably the GPs too.
     
    Last edited: Oct 1, 2019
    ladycatlover, Andy, Wits_End and 5 others like this.
  15. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    This is my local service now

    https://www.lscft.nhs.uk/clmw-cfsme.
    "The CFS/ME Service aims to provide supportive, holistic patient centred advice to aid acceptance, education and self-management for adults with mild or moderate CFS/ME in Lancashire."

    It's been grouped, along with physio and rheumatology services, under a new banner - Central Lancashire Moving Well: https://www.lscft.nhs.uk/central-lancashire-moving-well
    "This service is available for people who are registered with a GP Practice in Greater Preston, Chorley or South Ribble."

    Not living in one of those areas, I am totally unsure whether I can be referred to the ME/CFS clinic. Why can't things be simple!
     
    Last edited: Oct 2, 2019
  16. JemPD

    JemPD Senior Member (Voting Rights)

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    There is a list of all the NHS 'specialist' CFS services on the MEA main website.

    gosh... wouldn't that be marvellous! if they stopped referring people because patients said they werent happy with it & it didn't help, instead of blaming the patients.

    Edited - noticed the word 'because' was missing.
     
    Last edited: Oct 1, 2019
    ladycatlover, Andy, Wits_End and 3 others like this.
  17. Simbindi

    Simbindi Senior Member (Voting Rights)

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    Location:
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    Regardless of what these services write on their websites (which often incorrectly says that the patient needs to live in a specific area), if your CCG commissions specialist ME/CFS services (that is a similar type of service), you have the right to choose where you are referred (anywhere in England, providing that the service has a contract with at least one NHS commissioning body). This is a legal right in England and applies to both physical and mental health services. However, it does depend on the type of services your CCG 'routinely commissions', so you may need to ask them what this is for CFS/ME.

    See:

    https://www.nhs.uk/NHSEngland/patient-choice/Documents/patient-choice-leaflet.pdf

    https://www.nhsconfed.org/resources...ght-to-choose-where-you-receive-nhs-treatment

    https://www.gov.uk/government/publi...k-what-choices-are-available-to-me-in-the-nhs
     
    Last edited: Oct 1, 2019
    Annamaria, ladycatlover, Andy and 2 others like this.
  18. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    I just rang the number on the page. Not recognised.

    I then rang a different number—the one for 'Central Lancashire Moving Well'—and was told the ME/CFS service was indeed only for those registered with a GP in certain areas. Certainly not a 'Lancashire' ME/CFS service. Therefore, there is no local service for me.
     
    Annamaria, ladycatlover and Trish like this.
  19. Trish

    Trish Moderator Staff Member

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    Location:
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    Can I ask, @InitialConditions, why anyone would want to access a local ME service in the UK, given that we know there is nothing they can tell us that is helpful, and the staff are likely to be 'therapists' not specialist doctors.

    The only 'value' I can see in current UK services is to tick the box on benefit applications saying you've been diagnosed by a specialist clinic, and have done whatever (useless) treatment they offer.
     
  20. InitialConditions

    InitialConditions Senior Member (Voting Rights)

    Messages:
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    Location:
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    I may have gone to this combined service because they have physio and MSK teams which could have been useful. But the main reason is indeed the benefits issue. I guess I can say I asked my GP to refer me but the service has closed!
     

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