In Schotland wordt,
op initiatief van de NHS-afdeling van het Lothan-district
en de Edinburgh ME Support Group (EDMESH),
naar aanleiding van de uitkomsten van een onderzoek onder 168 patiënten,
een Good Practice-verklaring over diagnose en behandeling van ME
verzonden aan alle huisartsen.
Tevens vindt op landelijk nivo een raadpleging plaats
om de behoeften van patiënten als het gaat de diensten van de NHS ("ziekenfonds")
in kaart te brengen.
Beide initiatieven zijn in het Schotse parlement tot stand gekomen.
Zouden ze daar in Schotland nog MEdische vluchtelingen kunnen gebruiken?
Voor het onderzoek onder 169 ME-patiënten klik op onderstaande afbeelding
'Believe in ME' report published by NHS Lothian as part of commitment to improve services for patients with ME
Patients' experiences of living with ME (Myalgic Encephalomyelitis) and
of accessing and using services in Lothian to treat the condition are described in a new report published by NHS Lothian.
The report, Believe in ME, highlights the results of a survey gauging the
views and experiences of 168 people across Edinburgh and the Lothians,
most of whom have been diagnosed with ME -
also referred to as Chronic Fatigue Syndrome (CFS), or Post Viral Fatigue Syndrome (PVFS).
The survey was carried out as part of NHS Lothian's commitment
to working closer with patients to develop services and
to improve information available to health professionals to support patients with ME/CFS.
It was also conducted in response to concerns raised by ME patients about the services they receive.
The survey was distributed widely across NHS Lothian and
to ME self-help groups and was made available electronically by edmesh - the
Edinburgh ME self-help group - through its website.
ME patients' experiences and perceptions highlighted in Believe in ME include:
- not being listened to or understood
- delays in diagnosis
- lack of support in managing symptoms
- problems in finding information about ME
- scepticism about ME from health professionals and wider society.
Jackie Sansbury, NHS Lothian's Director of Strategic Planning and Modernisation, said: quot;The survey results published in Believe in ME
have helped identify what patients with ME/CFS in Lothian need in terms of better support. he patients' views will be incorporated
into a review of ME services, which we are currently undertaking."
Paul Currie, a Strategic Programme Manager with NHS Lothian, said:
"The Believe in ME survey findings will not only help us in our review of ME services,
but also help raise awareness and understanding of the condition.
We are grateful to edmesh for their help in promoting and distributing the survey."
Liz Blackadder, an edmesh committee member, said:
"edmesh group is very happy to see the publication of the Believe in ME report for Lothian
and hopes that it has a wide circulation and that all its recommendations will be implemented.
It will be critical that the patients' viewpoints and experiences are central to service developments and
edmesh is keen that the voices of people with ME are not lost."
NHS Lothian welcomes the launch on 14 May
of two healthcare initiatives for people with ME:
- a Scottish Good Practice Statement for GPs on the diagnosis and management of ME/CFS and
a national consultation on a needs assessment of healthcare services
for people living with the illness.
Both initiatives were launched in the Scottish Parliament
and are supported by the Scottish Government Health Directorates.
Paul Currie said:
"With the publication of Believe in ME and our ongoing commitment
to improve health services for people diagnosed with ME/CFS,
this is a timely launch of these two initiatives."
Liz Blackadder said:
"edmesh sees the launch of the two national initiatives during ME Awareness Week
as a very important milestone in the development of services for people with ME in Scotland and
the recognition of ME as a serious long-term condition for many people."
Notes to Editors
ME/CFS is a complex, debilitating condition
covering a wide spectrum of illness that can be challenging to diagnose and treat.
It is estimated that it affects up to 20,000 people in Scotland and up to 250,000 people in the UK.
Believe in ME was compiled by Anne-Marie Comber,
a patient involvement worker with Edinburgh Community Health Partnership and Liz Simpson, NHS Lothian
19 May 2009
http://www.nhslothian.scot.nhs.uk/
news/mediaroom/news_release/09_05_19_believe_in_ME.asp
'Milestone' celebrated as ME document is sent to GPs
Published Date: 18 May 2009
By Adam Morris
FOR years it has been dismissed as "yuppie flu",
fuelling a perception that it has received little attention from doctors.
But campaigners for recognition of ME as a serious illness
both in the medical world and among the general public
are celebrating what they are branding a "milestone" move.
...
http://edinburghnews.scotsman.com/latestnews/Milestone-celebrated-as-ME-.5276100.jp
Met dank aan Jan van Roijen
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