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United Kingdom: London - Royal Free Hospital CFS services

Discussion in 'UK clinics and doctors' started by Sly Saint, Jun 29, 2022.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    8,094
    Location:
    UK
    Royal Free Hospital
    https://www.royalfree.nhs.uk/servic...e-service/chronic-fatigue-syndrome-treatment/

    recommended reading still

    Fatigue
    Overcoming chronic fatigue: a self-help guide using cognitive behavioural techniques (Mary Burgess and Trudie Chalder)
    Coping better with chronic fatigue syndrome/myalgic encephalomyelitis: cognitive behaviour therapy for CFS/ME (The self-help series) (Bruce Fernie and Gabrielle Murphy)
     
    Hutan, livinglighter, chrisb and 3 others like this.
  2. josepdelafuente

    josepdelafuente Senior Member (Voting Rights)

    Messages:
    119
    Hi there,

    I've had a referral to the Royal Free Fatigue service - I was able to access it through registering with a GP who serves the area of one of my family members.
    Tbh the main reason I wanted to referral was to get a diagnosis so I can take part in DecodeME.
    The GP (erroneously) believes they are unable / not allowed to make an ME diagnosis themself, and said that the Royal Free fatigue service can do so.

    The referral was made 3rd August, I haven't heard anything from them yet or been given an appointment. I'm a little apprehensive but I'm hoping that they have caught up with where things are at now, and maybe I can prepare / steel myself before the first appointment to make sure we don't end up going down any of the classic dead-end / BPS etc roads. Maybe I can get some free counselling too.

    Anyone had any experience with this service?
     
    MEMarge and Trish like this.
  3. Shadrach Loom

    Shadrach Loom Senior Member (Voting Rights)

    Messages:
    313
    Location:
    London, UK
    I have discussed or mentioned my ME/CFS symptoms at the Royal Free with consultant endocrinologists, urologists, cardiologists, urological surgeons and a loathsome neurologist. All the consultants seem to know each other.

    Not a single one has ever said “hey, you should get a referral to our fatigue service, they are dead good and Dr X there is a genius”.
     
  4. CRG

    CRG Senior Member (Voting Rights)

    Messages:
    1,144
    Location:
    UK
    @josepdelafuente

    NHS England has information on wait times: https://www.nhs.uk/nhs-services/hospitals/guide-to-nhs-waiting-times-in-england/

    "The maximum waiting time for non-urgent, consultant-led treatments is 18 weeks from the day your appointment is booked through the NHS e-Referral Service, or when the hospital or service receives your referral letter."

    There is a a link to a local search: https://www.myplannedcare.nhs.uk/ I don't know what department the RF ME/CFS clinic comes under but clicking through to "Pain Management" at the RF gives:

    Average waiting time for first outpatient appointment at this hospital for this specialty = 30 weeks

    as I might have said in other posts - "the NHS is in crisis !"
     
    MEMarge and josepdelafuente like this.
  5. josepdelafuente

    josepdelafuente Senior Member (Voting Rights)

    Messages:
    119
    Haha, a ringing endorsement!
     
    MEMarge likes this.
  6. josepdelafuente

    josepdelafuente Senior Member (Voting Rights)

    Messages:
    119
    Thanks for this info!
     
  7. BrightCandle

    BrightCandle Senior Member (Voting Rights)

    Messages:
    339
    Location:
    UK
    Based on what they say on the webpage I can't help but think the CQC assessment is spot on:

    CQC overall rating
    Requires improvement

    They are promising an awful lot they can't deliver, sure looks like BPS hiding in plain sight to me.
     
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    8,094
    Location:
    UK
  9. josepdelafuente

    josepdelafuente Senior Member (Voting Rights)

    Messages:
    119
    I received a call from my GP practice saying that if I wanted to instead be referred to the "Chronic Fatigue Syndrome & Fibromyalgia Service (RAS) - RLHIM - UCLH - RRV " it would be much quicker. Apparently if I haven't heard from them by Thurs 15th I should get in touch with them.

    A quick look at their website suggests they might be quite BPS too. Hard to tell. I would mainly be after the diagnosis. Will find the thread about this service and continue there!
     
    MEMarge and Trish like this.

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