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

[Daisy]

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

 

[Daisy]

Text of the start of the article:

“Postcode lottery” claims have been made over treatment for myalgic encephalomyelitis (ME) in Norfolk and Suffolk, as one sufferer said variations in care had left her angry and abandoned.
/QUOTE]

Edited to remove the text of the full article. Apologies for posting.

 

[Esther12]

Text of the article:

Thanks, although maybe good to get more clicks on decent articles.

 

[Daisy]

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number of follow-up visits, they have cut back significantly on home visits, they have cut back on staff and they have withdrawn support for benefit claims.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".

 

[Barry]

Thanks, although maybe good to get more clicks on decent articles.

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?

 

[Trish]

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?

@Daisy kindly shortened her post because copyright law and our rules don't allow quoting whole articles.

 

[Barry]

@Daisy kindly shortened her post because copyright law and our rules don't allow quoting whole articles.

Yes I did appreciate that. Maybe I misinterpreted this and similar ...

But she said the illness had been made worse by not having access to treatment she said would give her “hope for a better future”.

... as suggesting access to treatments was the biggest issue, rather than not having proper treatments at all.

 

[Daisy]

@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.

 

[Cinders66]

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".

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 ?