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Specialist ME Clinic for Moderate & Severe patients in Suffolk suspended

Discussion in 'General ME/CFS News' started by Daisy, Jan 31, 2019.

  1. Daisy

    Daisy Senior Member (Voting Rights)

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    Last week Suffolk CCG's contacted the Patient / Carer Group to let us have the incredibly disappointing news that the additional service set up last year and led by Dr Nacul is to be suspended.
    http://nandsme.blogspot.com/2019/01/specialist-me-cfs-clinic-in-suffolk.html

    No new patients are to be taken on and all existing patients are to be discharged into the care of their GP's with a Care Plan. Patients whose referrals have been accepted will be seen by Dr Nacul in the next couple of months.

    Suffolk CCG's have assured us that they will explore options to identify another biomedical specialist doctor to meet the needs of moderately and severely affected patients in Suffolk. Unfortunately, as you know, there are not many such doctors available.

    In both Norfolk and Suffolk problems with the ME and CFS 'community service' provided by East Coast Community Health, remain entrenched and longstanding.
     
    Inara, Sean, MEMarge and 14 others like this.
  2. Hutan

    Hutan Moderator Staff Member

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    Do you know what the reason is for that @Daisy? Presumably it's not a budgetary constraint if
     
  3. Daisy

    Daisy Senior Member (Voting Rights)

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    @Hutan , thanks for your interest. No it's not a matter of money. For years Suffolk has used the Individual Funding Request process to finance care for some patients with ME, and this has continued with Dr Nacul's service.
    https://www.england.nhs.uk/publication/specialised-services-individual-funding-requests/

    Unfortunately Suffolk Commissioners weren't able to let us have much information about what has happened. We do have a good working relationship with them, and they have told us as much as they are able (or know) which isn't much!
     
    WillowJ, MEMarge, Hutan and 9 others like this.
  4. Daisy

    Daisy Senior Member (Voting Rights)

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    Just to add a personal note on this. I saw Dr Nacul through this service. The medical review was very thorough indeed, with regular followup planned. I was greatly impressed. In addition, Dr Nacul clearly has a great deal of respect for the knowledge of his patients regarding their ME. The combination of expertise, respect and compassion is sadly rare in the ME field. It was so refreshing after years of ignorance, dismissal and difficulty just trying getting help with medication to ameliorate symptoms.
     
    WillowJ, mango, Keela Too and 18 others like this.
  5. Trish

    Trish Moderator Staff Member

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    What a pity. I hope Dr Nacul is OK. It is understandable that they can't give out details of why an individual is no longer doing a job.
     
    Esther12, ukxmrv, MEMarge and 11 others like this.
  6. Daisy

    Daisy Senior Member (Voting Rights)

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    Yes indeed. Which is why there is no speculation as to the reason for the change on the Service Development website post mentioned above.
     
    Esther12, ukxmrv, MEMarge and 6 others like this.
  7. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Is it possibly because he will be sitting on the NICE guidelines committee? (If I am even remembering this correctly)
     
    Esther12, ukxmrv, andypants and 2 others like this.
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  9. Andy

    Andy Committee Member & Outreach

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    Reply to above tweet
     
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  10. Andy

    Andy Committee Member & Outreach

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    https://cureme.lshtm.ac.uk/dr-luis-nacul-appointed-to-new-position/
     
    Cinders66, WillowJ, Esther12 and 5 others like this.
  11. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Our loss, their gain, but even the 6 months of cover was SO worthwhile. .....
    It's a model, now tested and one to build on!
     
    WillowJ, MEMarge, Esther12 and 5 others like this.
  12. Trish

    Trish Moderator Staff Member

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    Good to see Dr Nacul will still be on the NICE guideline group and still working part of the time with the ME/CFS Biobank.
     
    ukxmrv, WillowJ, MEMarge and 5 others like this.
  13. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    Congratulations Canada, Commiserations Suffolk. Hope suitable efforts are made to find a replacement for the Clinic swiftly.

    Ditto @Trish ’s comment.
     
    WillowJ, MEMarge, Esther12 and 3 others like this.

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