NHS Lothian and You!
By webmaster • Aug 14th, 2008 • Category: NewsThere still appears to be no one available to take a lead on ME/CFS for Lothian Health - as at mid August. This means that the Report based on our patient survey questionnaires has still not been published.
We are very concerned that the important information and recommendations in the Report should not be buried. The edmesh Committee has therefore decided to publish the final draft version of the Report on our website. Click here to read the draft report (PDF format).
We very much hope that the Report will be officially published by Lothian Health as soon as possible; and will be widely distributed to health and social care professionals as promised.
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As an ME sufferer in England I read your survey with great interest. Although services are allegedly better here than in Scotland, in reality we face exactly the same problems as fellow sufferers in Scotland. The specialist ME clinics take a long time to get referred to, and once there all that is on offer is psychiatric treatment i.e. CBT and GET. Generally there is inadequate advice, disbelief and all the other things familiar to your members. We are left to drift on our own, at the mercy of sharlatans selling quack cures and fighting for benefit or anything else we need. But at least its across the country and not a post code lottery!
One comment I would like to address is the one from someone saying it is not a life threatening disease. I thought this too and have since learned that our life spans are shortened by as much as 25 years and that ME will probably be the underlying cause of whatever it is that kill us.
I hope that your report is not only published but picked up by other media groups too. Thanks to all involved for compiling it.
Sue
This news item has now been picked up by the Edinburgh Evening News - see article here:
http://edinburghnews.scotsman.com/health/Health-leaders-accused-of-39burying39.4398149.jp
[...] In Scotland, Lothian NHS has been accused, by Edinburgh MESH (MESH = ME Self Help, for those readers outside the ME community), of sandbagging over a report into ME/CFS care in the area. You can download a copy of the report from the Edinburgh MESH website, here. [...]