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ME/CFS services in the UK

Discussion in 'General ME/CFS News' started by Sly Saint, Sep 5, 2018.

  1. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    If a provider can't even cope with it's true "mental health and well being" how the hell will it cope with those with LTC like ME?

    "November 28 2018
    The Care Quality Commission has published its inspection report on the Norfolk and Suffolk NHS Foundation Trust (NSFT).
    It has given the organisation an overall rating of 'inadequate'.

    As one of the commissioners of the mental health trust, NHS West Suffolk CCG, along with other commissioners in Suffolk and Norfolk, has issued the following statement, in response to this "inadequate" rating for the trust.
    “Members of the public, service users, carers and staff have all been involved in wide-ranging conversations about how to make services fit for the future and we are determined that out of these, long term improvements are put in place.

    “In Suffolk, partners from a range of organisations including NSFT, Suffolk User Forum, Suffolk Parent Carer Network, Suffolk Family Carers and Healthwatch Suffolk have been working to identify what the county’s mental health strategy and model should look like in the future. Together with a wide-ranging survey #averydifferentconversation there has been excellent feedback to inform a developing Mental Health and Emotional Wellbeing Strategy. This strategy, along with an accompanying delivery plan, will go before the Suffolk CCGs’ governing bodies for approval in January...."
     
  2. Amy101

    Amy101 Established Member (Voting Rights)

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    CAMHS replied to my email (though they didn’t actually fully address much of what I said so I have the feeling they received numerous emails and sent out a generic reply) and this is their reply:

    Good Morning,

    Thank you for your feedback and for raising your concerns. We can confirm that the webpage and reference we believe you are referring to is not one that is hosted by our organisation. It is managed and uploaded by Northamptonshire County Council Local offer team. We have asked that they remove this reference and they have done so today.

    We have liaised with our colleagues in CAMHS and they have confirmed that as Trust we recognise Myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS) as physical health conditions and are aware of the latest NICE guidance. If a young person with ME/CFS required psychological input at the current time they would receive this from our Paediatric Psychology department and not CAMHS.

    We fully appreciate the distress this may have caused and as above have liaised with the owners of this site to action the removal of this listing. We hope this clears up any confusion regarding our position on this matter.
     
  3. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Probably a non selected Google......
     
    ladycatlover likes this.
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Last edited: Nov 30, 2018
  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Child and Adolescent Mental Health Service

    (CAMHS) Access Policy
    Barnet Enfield and Haringey Mental Health trust

    1. Somatisation Disorders, Hypochondriasis, Dissociative Disorders, Pain Syndromes & Chronic Fatigue Syndromes: CAMHS will work in close liaison with Paediatric services. Refer to Paediatrics in the first instance to rule out organic causes.
    1. Anxiety: Significant anxiety which is persistent and affects day to day functioning. Examples might include: somatic symptoms, phobias, school refusal, and frequent ruminations.
    1. School Refusal: Refer to education welfare services in the first instance.. Refer to CAMHS if there is evidence of mental health concerns, e.g. where the child has severe emotional distress linked to attending school.
    https://www.google.com/url?sa=t&rct...20draft.docx&usg=AOvVaw3vDtEBzdX4A_CrY5FcFwv4


    Essex CAMHS:

    Somatisation disorders, Hypochondriacal/ Dissociative/ Conversion Disorders, PainSyndromes & Chronic Fatigue Syndromes, Medical Conditions and Physical Disabilities
    with mental health complications

    Refer to Paediatrics first and then to CAMHS if necessary

    Paediatricians have access to some hospital based CAMH services in each locality for in patients and some paediatric clinics.

    haven't checked out all the other CAHMS but imagine they are much the same.
     
  6. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    04/03/2018

    East London Foundation Trust (ELFT) has stopped taking referrals for patients with chronic fatigue syndrome in City and Hackney and will cease running the service from April this year.

    City and Hackney clinical commissioning group (CCG) said the mental health trust had decided to end the service because it considered the provision ‘not part of their core business.’

    The CCG is planning to commission a new Complex Chronic Conditions service locally that would include the existing pain clinic service at St Leonards Hospital.

    In the meantime GPs have been told to refer new patients to the Royal Free Hospital.

    Chronic Fatigue syndrome, also known as ME or myalgic encephalomyelitis, is a debilitating long-term illness with a wide range of symptoms including extreme tiredness.

    Around 70 patients a year in City and Hackney are referred to the chronic fatigue service. Around 50 of these patients go on to receive treatment for Chronic Fatigue.

    Under-18s who show symptoms of chronic fatigue will continue to have an initial assessment with the child and adolescent mental health services (CAMHS).

    Children who require treatment will be referred to the Royal Free Hospital's all-age service.

    A CCG spokesman said: ‘It is planned that a City and Hackney-only service will be provided locally as part of the Homerton pain clinic.

    ‘Joining pain and chronic fatigue together makes clinical sense as the two share some similarities in terms of treatments. It also means that we will be able to retain local provision.’

    He said the new service was expected to be operational ‘later this year’ but in the meantime local GPs had been asked to refer patients with Chronic Fatigue to the Royal Free Hospital.

    Read about treatments available for Chronic Fatigue Syndrome on the NHS Choices and ME Association websites.
    Click to expand...
    http://www.healthwatchhackney.co.uk...-out-city-and-hackney-chronic-fatigue-service
     
  7. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Oh how the mighty are fallen.......?
    "East London Foundation Trust (ELFT) has stopped taking referrals for patients with chronic fatigue syndrome in City and Hackney and will cease running the service from April (2018) this year."

    "Chronic Fatigue
    Chronic Fatigue Service


    The Chronic Fatigue Service based at St. Leonards Hospital is one of the largest in the UK ( really???) (The ONS mid-year population estimate for 2016 put Hackney's population at 273,526.)

    and provides a comprehensive, multidisciplinary out-patient service for people with CFS/ME.

    Over 10 professional staff, including physicians, liaison psychiatrists, physiotherapists, clinical psychologists and occupational therapists provide a consistent and excellent standard of care for
    patients, families and carers affected by Chronic Fatigue, using models of best practice and a range of evidence based treatments."

    Around 70 patients a year in City and Hackney are referred to the chronic fatigue service......

    Norfolk and Suffolk ME and CFS Service have 1600 referrals a year, they say. (Population Norfolk 859,400 plus Suffolk 730,000 lived in the county with 133,384 living in Ipswich = 1,589,400)

    which means Suffolk are running at over 4 X as many referrals per head of population at Hackney.

    Plus Suffolk is an ME and CFS NOT a Chronic Fatigue Service ...(allegedly).
     
    MEMarge and ladycatlover like this.
  8. MEMarge

    MEMarge Senior Member (Voting Rights)

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  9. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    This looks to be interesting.......

    http://www.cbtwatch.com/complex-iapt-dumping-secondary-care/
    ‘Too Complex for IAPT’ – Dumping on Secondary Care?
    12th August 2017 admin IAPT, Resources

    admin
    12th August 2017 at 1:50 pm


    IAPT don’t have a clue what they are assessing, so how can they measure outcome, other agencies and private practitioners are left to pick up the pieces

    Dr Mike Scott

    Also,

    http://www.cbtwatch.com/wasting-taxpayers-money-fire-fury-cbt/
    ‘The results are, at best, unreliable, and at worst manipulated to produce a positive-looking outcome’ so write the editors of the current issue of the Journal of Health Psychology, (http://journals.sagepub.com/toc/hpqa/current). They are writing in relation to a study of the efficacy of CBT for chronic fatigue syndrome ( CFS – the PACE trial).
     
    Cheshire, obeat, MEMarge and 6 others like this.
  10. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    This chap looks like he might be worth cultivating....! http://www.michaeljscottptsd.com/
    "
    A Failed Mental Health System

    Mental Health undoubtedly needs to be better resourced but the clamour for equity with physical services masks that ‘the current mental health system is not fit for purpose’, see my just published book ‘Towards a Mental Health System that Works’ by Routledge. Further the UK Governments flagship Service, Improving Access to Psychological Therapies (IAPT) has not been independently evaluated using a ‘gold standard’ diagnostic interview. I argue that the best available data actually suggest a 15% recovery rate, no better than placebo. Case examples of the failings of current services are detailed together with ways forward. This week (mid July 2017) the National Audit Office announced an IAPT Performance Investigation and invited submissions re: IAPT to David.Raraty@nao.gsi.gov.uk or Jenny.George@nao.gsi.gov.ik

    Dr Michael J Scott is a Consultant Psychologist, currently working in private practice in Liverpool. He has a particular interest in Post-traumatic Stress Disorder and Cognitive-Behavioural Therapy, he has been an Expert Witness for 20 years, and alongside providing individual treatment and workshops is the author of twelve books."
     
    MEMarge, ladycatlover, Amw66 and 6 others like this.
  11. Trish

    Trish Moderator Staff Member

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    Cheshire, MEMarge, rvallee and 5 others like this.
  12. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    BACME have a new "Find a specialist CFS/ME service" on their website

    https://www.bacme.info/#help

    (does anyone know how to find out about the current Governance of BACME; Gabrielle Murphy is apparently no longer Chair, so who is?)
     
  14. Sasha

    Sasha Senior Member (Voting Rights)

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    Does that map work? I tried it out to see what it listed locally and nothing shows up, no matter how many hundreds of miles I extend the range.
     
  15. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Same here. I don't think it does.
     
  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    :laugh: says it all really!
     
  17. Trish

    Trish Moderator Staff Member

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    Just spotted this on Twitter:


    Edit to add:
    Note particularly to top right page:
    The Facts of Life with CFS:
    Although there is no disease there are problems:
    ...
     
    EzzieD, Hutan, Cheshire and 10 others like this.
  18. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    Just seen this leaflet. What a fucking mess, regardless of the truly shocking 'there is no disease' statement. Leaflet somehow acknowledges PEM and advocates for pacing, yet the Liverpool CFS service claims to follow NICE guidelines. Absolute shit show. An incoherent mess, all washed down with that horriblly cheap 'YOU ARE POWERFUL / IN CONTROL' false support.
     
    Snow Leopard, EzzieD, Hutan and 6 others like this.
  19. Esther12

    Esther12 Senior Member (Voting Rights)

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    And then the final page:

    "You determine what happens this Christmas.

    There is personal choice in deciding how you will manage Christmas."

    Okay - I'll recover then. Awesome.
     
    Wits_End, Arnie Pye, Dolphin and 15 others like this.
  20. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    Simbindi, rvallee, JohnM and 10 others like this.

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