As part of ME Awareness Week, from the 6th to 12th May 2012, the Cross-Party Group on ME at the Scottish Parliament hosted a reception attended by MSPs, ME charities and groups, and their guests.
The aim of parliamentary Cross-Party Groups is provide an opportunity for members of all parties, outside organisations and the public to meet and discuss a shared interest in a particular cause or subject, and a Cross-Party Group on ME has been in existence since 2001. In the past 11 years, the Cross-Party Group has campaigned successfully for a Short Life Action Group on ME/CFS, the report of which was published in 2002 (available here in pdf format), and it has facilitated the creation of key clinical documents, such as the Scottish Good Practice Statement on ME-CFS (2010), and the ScotPHN Health Care Needs Assessment of Services for people living with ME/CFS (2010).
The reception in the Garden Lobby of the Scottish Parliament at Holyrood was opened by Mary Fee MSP, Convener of the Cross-Party Group, who welcomed everyone and described the principal aims of the group, namely, to help MSPs address and represent the needs of ME patients to the Scottish Parliament and Government, and to provide MSPs with sources of information and expertise. Mary then introduced four key speakers, each of whom gave short presentations on areas of special concern in ME/CFS.
The first presenter was Jo Bluett who described her own experiences of living with ME for over 19 years. Her speech touched on her relationship with her GP built up over 15 years, whom she went to see only about non-ME related issues, as both agreed that Jo was best placed to manage her condition through self-management and pacing. Essentially, Jo kept a log of all her symptoms and ME-related events, and then, once a year, met with her GP to exclusively discuss her condition. The GP was then able to use this information for any reports required for benefit applications and appeals (aspects which she found to be THE most stressful experience of living with ME). Her main theme was her struggle with ME over the years, and the fact that she is now better able to cope with the illness despite living with constant pain, headaches, brain fog and cognitive problems.
Through an opportunity to apply for funding from the Long Term Conditions Alliance Scotland Self Management Fund, Jo was able to complete training in a complementary therapy along with six other people under the Edinburgh ME Self-Help Group (EDMESH) “Therapies for ME Project”. She joined the Training for Work for Self-Employment Programme 18 months ago; primarily designed for those on Job Seekers Allowance, the programme presented huge challenges for Jo while managing a health condition (including a withdrawal for eight months due to relapse), but with the invaluable and positive support of DHP Scotland she was able to finally complete the programme at the end of 2011. Now working self-employed as a therapist using the Bowen technique and Laughter therapy, Jo felt her life was now turning around after nine years of being unable to work.
Dr Gregor Purdie, a general practitioner and Clinical Lead for ME/CFS NHS Dumfries, discussed ME/CFS from the practising clinician’s perspective. Dr Purdie is now actively involved in moves towards setting up a Clinical Forum for ME/CFS, a medical society for clinicians with a special interest in this area who would promote good clinical practice in the management of patients through education, and training and mentoring of other clinicians. Membership would include GPs, Allied Health Professionals, Community Nurses and Secondary Care physicians. The key functions of the forum would be to update published guidance on ME, scrutinise current research, develop more detailed guidance for specific clinical areas (e.g., children and the most severely affected patients), and advise on new treatments. Its information will be disseminated through presentations, publications, e-learning packages and the internet.
The third presenter was the father of a child with severe ME, who described the immense difficulties involved in obtaining a proper diagnosis and accessing appropriate clinical care and treatment for his daughter. This was undoubtedly the most moving of the presentations, since it highlighted some of the torments and traumas undergone by parents of a child with ME. In a recent Editorial in Breakthrough, Sue Waddle, one of ME Research UK’s trustees, described her own family’s experience: “
My child was badly let down by almost every professional she came into contact with, but our family’s story is not unique. While tragedies, such as the deaths of Sophia Mirza and Lynn Gilderdale, are fortunately rare, there remain many families doubly scarred – by the severe, chronic illness of a child, and by the severe, chronic scepticism of professionals who should know better.”
In 2002, a report to the Chief Medical Officer of England (Section 2.3.1) remarked that the “
…severely ill are severely overlooked; just ignored and invisible”, and it is sobering to consider how little progress seems to have been made in the following decade, particularly as regards the diagnosis and care of some young people with the illness.
For the final presentation, Cross-Party Group member and Perth and Kinross Council primary school teacher Samantha Holt described a “Virtual Learning Experience” which uses GLOW technology to allow young people with ME to access education. Samantha’s younger brother was diagnosed with ME in the first year of his secondary school, and she saw at first hand the devastating effect that a lack of formal education and social isolation can have. As Samantha pointed out, traditional educational assistance, where local authorities arrange for home tuition at pre-arranged times, is singularly unsuited to children with ME due to unpredictable fatigue and concentration issues.
Perth & Kinross Council have been in the vanguard of the use of GLOW, the world’s first national safe and secure online community for pupils, parents and teachers. GLOW allows pupils to learn using the tools of technology they are familiar with, and gives access to information and activities including interactive educational games, revision papers, links to other sites and news features, and is fully integrated into Scotland’s examination system. Although not specifically designed for children with ME, the system allows pupils to access course materials and watch pre-recorded classes at times convenient to themselves. Perth & Kinross Council aims to have all school pupils, teachers and many parents signed up for the system, and their success has led to their staff advising other councils on how best to utilise the opportunities offered by GLOW. The passion shown by Samantha and the drive of Perth & Kinross Council bodes well for young people with ME and their education.
The presentations were followed by an extended opportunity for MSPs, representatives of the main ME campaigning charities, and guests to mingle, mix and talk over tortilla chips and guacamole dip. In total, 17 MSPs attended: Justice Secretary Kenny MacAskill (SNP); former Presiding Officer Alex Fergusson (Con); Convener of the Cross-Party Group Mary Fee (Lab); Deputy Conveners of the Cross-Party Group Jim Eadie (SNP) and Siobhan MacMahon (Lab); Neil Bibby (Lab); Malcolm Chisholm (Lab); Bob Doris (SNP); Annabelle Ewing (SNP); Annabel Goldie (Con); Mark Griffin (Lab); Colin Keir (SNP); Fiona MacLeod (SNP); Margaret McCulloch (Lab); Jamie McGregor (Con); John Scott (Con); and Paul Wheelhouse (SNP). A further 11 MSPs sent apologies along with messages of support: Deputy First Minister Nicola Sturgeon (SNP); Elaine Smith (Lab); Stuart McMillan (SNP); Roseanna Cunningham (SNP); Nanette Milne (Con); Alison Johnstone (Green); Duncan McNeil (Lab); Gavin Brown (Con); Margaret McDougall (Lab); Richard Simpson (Lab); and Hugh Henry (Lab).
For an event organised at quite short notice, the reception attracted an impressive proportion (22%) of the 129 MSPs, and exhibitors included the larger ME charities with a presence in Scotland, such as the 25% ME Group; EDMESH; Action for ME, the ME Association and ME Research UK. While attendees were mingling, the documentary “Voices from the Shadows” (a compelling and intensely moving one-hour feature documentary in which the hidden voices of severely affected people with ME can be heard) was running on plasma screens around the Garden Lobby, forming a compassionate and moving backdrop to the event. As Carol Flack, who provides the secretariat to the Cross Party Group on behalf of the 25% ME Group, said afterwards, “
This was an initial step, and the Cross-Party Group will be taking this experience forward to inform our planning of future events, and debates. We must keep up the momentum to ensure our MSPs realise their important part in representing the needs of ME sufferers in Scotland through Parliament to the Scottish Government.”