1. Guest, read the 'News in Brief' post for w/c 07/01/19 here.
    Dismiss Notice

Article in today's Eastern Daily Press about the differences in care for ME patients in Norfolk and Suffolk

Discussion in 'General ME/CFS News' started by Daisy, Jul 26, 2018.

  1. Daisy

    Daisy Established Member (Voting Rights)

    Messages:
    50
    Likes Received:
    446
    As you may recall Suffolk NHS have begun to commission care from Dr Nacul (who leads the ME Biobank team at LSHTM) but commissioners from Norfolk and Waveney could not agree on a way forward. Norfolk patients are understandably unhappy about this.

    There is an article in today's Eastern Daily Press about a patient in Norfolk http://www.edp24.co.uk/news/health/...ial_Icon&utm_campaign=in_article_social_icons

    http://nandsme.blogspot.com/2018/07/dr-luis-nacul-internationally-respected.html?m=0

    ETA please click through to the Eastern Daily Press article if you can to encourage reporting of this nature, thanks @Esther12 for pointing this out to me
     
    Last edited: Jul 26, 2018
  2. Daisy

    Daisy Established Member (Voting Rights)

    Messages:
    50
    Likes Received:
    446
    Text of the start of the article:
     
    Last edited: Jul 26, 2018
    Hutan, Andy, Trish and 2 others like this.
  3. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    2,475
    Likes Received:
    20,754
    Thanks, although maybe good to get more clicks on decent articles.
     
  4. Daisy

    Daisy Established Member (Voting Rights)

    Messages:
    50
    Likes Received:
    446
    It is unclear how Norfolk and Waveney are listening to the views of patients as they claim when they have passed over an opportunity to commission biomedical care from a highly respected clinician.

    Not only that service from the current provider east coast community health has been reducing over the years. They have cut back on the number of follow-up visits, they have cut back significantly on home visits, they have cut back on staff and they have withdrawn support for benefit claims.

    There is little if any expertise to care for severely affected patients.

    It's difficult to see how this can be translated into "listening to patients".
     
  5. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    3,429
    Likes Received:
    22,682
    Except it talks about treatments, as if good treatments are there for the asking, if only the postcode lottery did not deny access to them. What treatments?
     
  6. Trish

    Trish Moderator Staff Member

    Messages:
    9,538
    Likes Received:
    52,797
    Location:
    UK
    @Daisy kindly shortened her post because copyright law and our rules don't allow quoting whole articles.
     
    Last edited: Jul 26, 2018
    Hutan and Barry like this.
  7. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    3,429
    Likes Received:
    22,682
    Yes I did appreciate that. Maybe I misinterpreted this and similar ...
    ... as suggesting access to treatments was the biggest issue, rather than not having proper treatments at all.
     
  8. Daisy

    Daisy Established Member (Voting Rights)

    Messages:
    50
    Likes Received:
    446
    @Barry I think that in this instance the patient means access to the appropriate level of specialist care. This may include medication for symptom control and and advice for the patient's GP.

    It's worth noting that the NHS is very hierarchical and GPs and other specialist are much more likely to listen to the views of a consultant than of an occupational therapist. the community service delivers care from occupational therapists and physiotherapists only.
     
  9. Cinders66

    Cinders66 Senior Member (Voting Rights)

    Messages:
    623
    Likes Received:
    3,853
    In a cash strapped era CFS services are seen as an area they can get away with skimping on. It's been like this always. Even dr bansals service, regarded as one of the best, was saying it couldn't provide severe care due to lack of funds. It's a sham but as a patient population we aren't to date effective in applying enough pressure, beyond individual complaints, to make current CFS neglect across the uk unacceptable. Our charities aren't campaigning on it arethey ?
     
    Skycloud, adambeyoncelowe and Trish like this.

Share This Page