Action for ME raises concerns in Scottish Parliament

Source: Action for ME
Date: November 14, 2017
URL:
https://www.actionforme.org.uk/news/raising-concerns-about-me-in-scottish-parliament/

Raising concerns about M.E. in Scottish Parliament
--------------------------------------------------

Action for M.E. has raised concerns about the lack of awareness and
understanding of M.E./CFS among health professionals at the Scottish
Parliament today.

Clare Ogden, Head of Communications and Policy at Action for M.E.,
appeared alongside other representatives from the voluntary sector to
give evidence to the Health and Sport Committee as part of their inquiry
into clinical governance in the NHS. She spoke about the need for more
systematic and wide-spread implementation of the Scottish Good Practice
Statement, a guideline produced in Scotland in 2008 to ensure
professionals had adequate guidance for appropriate practice for
patients with M.E.

Other issues highlighted include:
* People with M.E. had been seen by health professionals without a
proper understanding of the condition, and then failed to treat them
with dignity and respect.
* Families affected by M.E. are disproportionately referred for child
protection proceedings, due to a lack of awareness from health and
education professionals of the symptoms of M.E. and the limitations
these place on what activities a child can take part in.
* Patients must be involved from the earliest point of service planning,
as well as ensuring there's an accessible and transparent procedure for
feedback on services.

Action for M.E. were invited to the evidence session by the Committee,
following our submission of written evidence which was based on survey
responses from people with M.E. in Scotland. The Committee will also
consider evidence from patients and clinicians, before announcing its
findings.

--------
(c) 2017 AfME

 

Meanwhile the PACE trial and AfMEs relationship with Esther Crawley is an insignificance that PWME dont need advocacy orgs to get across to the establishment.

 

I have found the one from 2010 (?)
just reading it now and so far it seems better than what we have in England
http://www.scot.nhs.uk//wp-content/uploads/2015/06/GoodPracticeStatement.pdf

eta: the part on GET
Graded exercise therapy (GET) is intended to redress decline in physical fitness due to inactivity.18,19 GET has proved to be a particularly controversial form of treatment – which many patients have concerns about and some patients have indicated that GET has worsened their symptoms (see below).

 

If only doctors would actually read it.

 

There does seem to be a problem here.