Scotland: Review Treatment of People with ME Petition

On Thursday, 8th November, the Scottish Parliament Public Petitions Committee met to review evidence submitted in support of various petitions, including #MEAction’s petition: PE01690 Review Treatment of People with ME in Scotland. Submitted by Emma Shorter, on behalf of #MEAction Scotland, in June this year, the petition called on the Scottish Parliament to urge the Scottish Government to review the level of support for people with ME in Scotland.
Specific aims included discontinuation of CBT/GET, provision of specialist care for patients, investment in biomedical research and ensuring healthcare professionals’ training and education reflected the most recent scientific evidence.
Following the June submission, the Petitions Committee invited comments and evidence from a wide range of stakeholders and public bodies. The reaction of the committee to the responses received was very encouraging and they have now decided to invite Cabinet Secretary for Health and Sport, Jeane Freeman, to give evidence and discuss key issues.
[maxbutton id=”21″ url=”https://www.scottishparliament.tv/meeting/public-petitions-committee-november-8-2018?fbclid=IwAR1ymTRuMQqmI0oXJOIeJFKFnSg59S92KkOb_DwEsMaYYmMJGBiwiAk0zL8″ text=”Watch the petition” ]  
In her introduction, committee convener Johann Lamont remarked that the responses received appeared to justify the concerns expressed by the petitioner about an ‘inconsistency of approach, or awareness, across health boards’. She also mentioned that the submissions received from individuals regarding their experiences of deterioration following CBT/GET ‘appeared to be supported by stakeholders including Science for ME and Action for ME’.
She admitted to being struck, both by the number of responses received and the powerful arguments which they advanced. She also made particular mention of the evidence submitted by Professor Jonathan Edwards of UCL regarding the ‘building in’ of bias to studies such as the PACE trial, which claim to provide evidence for the efficacy of CBT/GET.
Petitions Committee Deputy Convener, Angus MacDonald, highlighted a survey of GPs, carried out by Action for ME in 2010, which showed that 82% of GPs surveyed had undertaken NO training on ME whatsoever and a ‘staggering’ 66% were unaware of the existence of the Scottish Good Practice Statement.
He supported the suggestion that the Cabinet Secretary for Health and Sport be called to appear before the committee to give her view on provision of services, particularly in the light of the Scottish Government’s failure, highlighted by #MEAction Scotland, to pick up a number of recommendations made by the Scottish Public Health Network (ScotPHN) in its 2010 healthcare needs assessment on ME.
In drawing the meeting to a close, Ms Lamont recalled the ‘scepticism’ that she remembered surrounding ME when she was a younger woman and commented on the fact that experience of such disbelief featured very strongly in the evidence submissions. It was, she suggested a question to ask the Cabinet Secretary: are Health Board responses and provision informed by that thinking still? And to what extent do the Scottish government recognise that that’s a problem?
#MEAction Scotland are pleased that the Committee recognises how serious the situation is and hopes that the meeting with the Cabinet Secretary will lead to positive, lasting change. People with ME in Scotland have been trying for years to effect change and we are grateful for their continued campaigning and support, which has provided us with a solid foundation for these most recent efforts.

Facebook
Twitter
WhatsApp
Email

5 thoughts on “Scotland: Review Treatment of People with ME Petition”

  1. Thank you all, as a severe patient, it is impossible to describe how frustrating and isolating it is to have nobody fully recognize that your life has been robbed (with the exception of close friends and family). Hospital staff are clueless about M.E. I pray every day that I will live to see proper recognition and treatment for this terrible illness.

  2. Thank you all, as a severe patient, it is impossible to describe how frustrating and isolating it is to have nobody fully recognize that your life has been robbed (with the exception of close friends and family). Hospital staff are clueless about M.E. I pray every day that I will live to see proper recognition and treatment for this terrible illness.

  3. Well done Scottish ME Action and getting your message to Government.
    Could you please give the English Parliament a wake up call .

  4. Well done Scottish ME Action and getting your message to Government.
    Could you please give the English Parliament a wake up call .

Comments are closed.

Latest News

reddish rectangle image with different color stripes of red coming out at a diagonal from the center. In the center is the TeachMETreatME logo. The words celebrating an impactful campaign in white font underneath the logo.

#TeachMETreatME: Celebrating An Impactful Campaign

We are THRILLED to share the rolling successes of our #TeachMETreatME campaign with you, as we report back on the amazing medical education events that have taken place so far – with many more to come in the upcoming months! (And don’t miss the global #MillionsMissing events later in the article!) Over the past several

Read More »

#MillionsMissing Week is Here: #TeachMETreatME in Action!

We are excited to announce the kick-off of #MillionsMissing 2024 – our ongoing campaign to Teach ME and Treat ME by educating medical providers across our nation’s hospital systems and medical schools about myalgic encephalomyelitis (ME).  Throughout the spring, summer and fall, #MEAction teams are hosting 13 medical education events to encourage medical providers to

Read More »

#MEAction’s Jaime Seltzer Selected for TIME100 Health 2024

We are thrilled to share with you that Jaime Seltzer, #MEAction’s Scientific Director, has been selected for TIME100 Health 2024, TIME’s new annual list of 100 individuals who most influenced global health this year! This is a huge honor based on years of work fighting for equity for people with ME.  We intimately know the

Read More »
Scroll to Top