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.
Following pressure from an NHS Lothian study,
the Scottish Government has circulated a document to all GPs
asking them to look more closely at the symptoms and treatment of the chronic illness,
which causes extreme tiredness and pain.
It is another significant progression for the condition in Scotland and
further abandons the idea that sufferers are merely lazy or behaving like hypochondriacs.
The Scottish Good Practice Statement on ME
comes after an internal report by NHS Lothian which acknowledges ME – or chronic fatigue syndrome –
has been neglected for years and related services are in desperate need of a shake-up.
In the document, GPs are told that ME causes
"significant ill health and disability in a number of adults, young people and children".
Symptoms include unexplained fatigue, sleep dysfunction and pain,
and that once these are evident for six months (three months for children), diagnosis can be made.
It adds that the quicker a diagnosis can be made,
the less severe impact ME can have on a victim's life.
Emotional support and counselling are also pushed in the document
to give maximum support to the estimated 4,000 people in the Lothians who could be affected by ME.
A spokeswoman for Edinburgh ME Self-Help Group,
which lobbies for improvements in medical and public awareness, said:
"This is actually something of a milestone.
"Some people do have very good doctors,
but there are still those who know little about the subject,
and we are pleased it is moving in the right direction.
"The ultimate goal is
to have ME considered alongside other long-term illnesses like MS and rheumatoid arthritis."
Public Health Minister Shona Robison said
both the Lothian study and the new advice for GPs were very important pieces of work.
"I welcome the contribution they will make
to the care of people with ME here in Scotland."
My fatigue is worse than dismissive jibes
LIZ BLACKADDER has become hardened to the dismissive jibes surrounding ME.
The constant pain and fatigue she endures
is far more of a concern than people dismissing the disease
as one that only manifests itself in lazy people.
Yet the 60-year-old from Marchmont can see both sides of the argument
from when she was a careers adviser,
a job she loved but was forced to give up because of ME when it was diagnosed in 1986.
She said: "Unless you have it, it is very difficult to understand,
and I know that when I was a careers officer
I wasn't always sympathetic with people
who said they had a disability which meant they couldn't work.
"What a lot of people don't appreciate is the pain.
Around 80 per cent of people with ME suffer this.
It makes everything difficult, even getting out of bed sometimes.
"I had to give up a job I absolutely loved and it impacted on me so much."
The full article contains 538 words and appears in Edinburgh Evening News newspaper.
http://edinburghnews.scotsman.com/latestnews/Milestone-celebrated-as-ME-.5276100.jp
Met dank aan Jan van Roijen
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