#MEAction Scotland Petition: Achievements and Agenda-setting

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Introduction

#MEAction Scotland submitted their petition to the Scottish Parliament in May 2018.  In June, Emma Shorter, #MEAction Scotland’s volunteer leading the petition, made a powerful speech to the Petitions Committee describing the desperate need for support for people with ME in Scotland.  Professor Chris Ponting, Chair of Medical Bioinformatics at Edinburgh University, and Janet Sylvester, #MEAction Scotland volunteer, also appeared as witnesses to speak in support of Emma’s evidence.

Since then, the Petitions Committee has continued to meet regularly to review progress on the petition and in August 2020 decided that it should be closed. It cited the latest response from the Government as proof that there was commitment towards the changes the petition called for and to the key issues being addressed. Whilst #MEAction Scotland regrets that the Committee will no longer be scrutinising progress on our petition, we accept that the role of the Committee is to make a difference by considering matters that are not being considered elsewhere in the Scottish Parliament. We believe that the Committee has fulfilled this role effectively and ensured that the Government has undertaken to provide support for people with ME.  We now have to make sure that the Government fulfills these commitments.

Summary of Actions

A brief summary of the key areas of commitment relating to our petition’s  aims: 

  • The Scottish Government committed to, and gave, funding for biological research into ME for the first time since 2011
  • Following meetings with #MEAction Scotland, the health board responsible for training and development of healthcare professionals announced it would develop a module on ME
  • Consultations with people with ME were commissioned to explore how services should be developed
  • The 2011 healthcare needs assessment is being reviewed
  • The Chief Scientist Office committed funding to identify ME research priorities
  • A rapid review of Graded Exercise Therapy for ME and post-COVID fatigue has led to an updating of the the Scottish Good Practice Statement

Gail Ross, a Member of the Scottish Parliament and deputy convenor of the Committee, confirmed the impact made by the petition in her closing statement to the Committee at the last meeting: “We owe a huge vote of thanks to the petitioner, as does everyone who suffers from this condition. We cannot overestimate what the petition has achieved, and the petitioner should be extremely proud of herself.”

History of Petition

In early 2018, Emma Shorter of #MEAction Scotland saw the opportunity to use the Scottish Parliament’s petitions system to put ME on the Parliament’s agenda. The Parliament’s Public Petitions Committee looks at all petitions submitted and decides how to deal with the issues raised. This route had been used by Helen McDade in 2002 to submit a petition on ME which led to the setting up of an All Party Parliamentary Group which had been unable to make progress on the key issues.  Sadly the issues remained the same 16 years later and Emma seized the opportunity to launch a new petition calling on the Scottish Parliament to urge the Scottish Government to review the level of support for people with ME in Scotland with a view to:

  • Investing in biomedical research and creating a centre of excellence for ME
  • Ensuring healthcare professionals’ training and education materials reflect the latest scientific evidence
  • Providing specialist care for patients and discontinuing the harmful treatments, graded exercise therapy (GET) and cognitive behavioural therapy (CBT).

Read more about the background to the petition here.

Since the first meeting in June 2018 #MEAction Scotland has made a dozen submissions in response to the evidence and in support of its petition.  We have been supported by researchers and charities, including  Professor Jonathan Edwards, Professor Chris Ponting, Professor Brian Hughes, Michael VanElzakker,  Science for ME, Invest in ME Research, Action for ME and Tymes Trust. Many people with ME have also submitted evidence on their personal experience of the harm done by Graded Exercise Therapy, the lack of support for patients, the need for research funding and the need for effective education of healthcare professionals, Many thanks to Stuart Brown,  Andrew Farrington and Lee Stocker plus numerous anonymous people with ME who submitted evidence. 

The responses from the NHS Health Boards and other public health organisations were in some cases supportive and in others hostile. NHS Lothian and NHS Borders confirmed that they actively recommend Graded Exercise Therapy to people with ME, with NHS Lothian, saying that they “do not accept the petitioners criticisms of the PACE trial”. In a subsequent submission NHS Lothian showed its lack of understanding of people with ME when it concluded “It is most unfortunate that hostility to such treatments and associated misconceptions have led activist groups (not patients in general) to reject these treatments and to also to seek to discredit the science supporting them.”  You can read #MEAction Scotland response to NHS Lothian here.

In response to our petition demand for effective education of healthcare professionals, we had a series of meetings with NHS Education for Scotland, the NHS board responsible for training and development of healthcare professionals in Scotland.  These meetings led to them agreeing to develop an ME module for GPs in 2019-2020. The delay in the publication of the draft NICE guidelines on ME has meant that the module has yet to be developed. The Government has also responded to the petition by contacting Scottish medical schools to discuss how they currently include ME in the curriculum. We know from previous surveys that ME is not included in the curriculum and we will continue to press for medical students to be educated about ME.

In January 2019 the Scottish Cabinet Secretary for Health met Emma Shorter to  discuss the issues raised by our petition. The following day, the Petitions Committee grilled the Cabinet Secretary for Health, the Scottish Chief Scientist Office  and the Chief Medical Officer – watch the video here.  The pressure exerted by #MEAction Scotland and the Petitions Committee resulted in the Cabinet Health Secretary appointing a senior civil servant and team leader on the Scottish Government’s clinical priorities team to coordinate the commitments made during the meeting in January. This appointment led to the Government arranging a meeting with a group of Scottish charities and organisations to discuss next steps, followed by the commissioning of consultations with people with ME by the Scottish Health Technologies Group. The Scottish Public Health Network was also tasked with reviewing the 2011 Health Care Needs Assessment. These pieces of work are positive steps, but sadly have been delayed by the COVID-19 pandemic. 

Following a second appearance to answer questions on progress on the petition in December 2019, the Cabinet Health Secretary  announced that the Scottish Chief Scientist Office would provide funding towards a Priority Setting Partnership led by the James Lind Alliance to identify the top ten research priorities for ME.  The launch of Scotland’s first National Framework for Action on Neurological Care and Support provided us with the opportunity to work with organisations representing other neurological conditions. During the consultations on the new Framework we raised the issues that ME could not be considered in the Framework as the recommendations were based on prevalence data and the development of existing services: neither of which exists for ME in Scotland. 

The latest impact of #MEAction Scotland’s petition and associated campaigning was the announcement that the Government would conduct a rapid review of Graded Exercise Therapy . This followed a highly successful email campaign by #MEAction Scotland asking people to contact their MSPs and demand the withdrawal of GET as treatment in Scotland. The results of the review were published in August 2020, advising caution in the use of GET to treat ME until the revised NICE guideline is published. Health Boards and GPs in Scotland are being notified of the results of the review and we anticipate that this will highlight to healthcare professionals that GET should not be used to treat people with ME. 

The Petitions Committee has encouraged us to monitor the progress made by the Scottish Government and submit a new petition for scrutiny if we do not feel that sufficient progress has been made. 

Moving Forward

We will continue  to maintain pressure on the Government to ensure that it meets the commitments it has made in response to our petition. The next step will be to respond to the reports on the Scottish Health Council’s consultations and the review of the Health Care Needs Assessment.  Working with other ME organisations in Scotland we will continue to develop our campaign for effective education of healthcare professionals. 

As a member of the Neurological Alliance of Scotland, we are involved with monitoring the implementation of the Neurological Framework for Action through discussions with neurological organisations. 

At a UK-wide level, the  NICE guidelines on ME will be published in draft  in November and we will be working closely with #MEAction UK on our response to these.

If you would like to help with our campaigning in Scotland please contact us here https://airtable.com/shrMfia5I9sUDgsY1 or email [email protected] for more information.

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