The Scottish Government has said it must not wait to address the needs of the ME community, but its latest report indicates that this is precisely what it has done and continues to do. The ME community has also waited: for nearly twenty years, people with ME in Scotland have waited for the government to act on the recommendations of successive reports but nothing has been done.
The Scottish Government’s report published at the end of January, “ME-CFS healthcare needs assessment: Briefing”, shows repeated failures over the last 20 years to provide support for people with ME. The briefing was commissioned by the Government in response to #MEAction Scotland’s petition in 2018 which called for improved treatment for people with ME.
The briefing, compiled by the Scottish Public Health Network (ScotPHN), reviewed what, if anything, had changed for people with ME since the publication of the 2010 Health Care Needs Assessment of Services for people living with ME-CFS. The 2010 report was a commentary on a 2002 report by the Scottish Chief Medical Officer recommending the development of services for people with ME. Published last week, it highlights the lack of progress on implementing the recommendations in the last twenty years and shows how little has changed for people with ME.
Unfortunately COVID-19 significantly curtailed the scope of the briefing as ScotPHN staff focussed on coordinating and developing responses to the pandemic. Several of the original key aims were dropped, including: assessing ongoing health and social care needs; reviewing the changes in the incidence of ME in Scotland since 2010; and including children and young adults in the review.
The result is a briefing which concludes that ”the 2010 recommendations remain relevant”: In #MEAction Scotland’s view, this is because the recommendations have not been implemented. We ask the Government to treat these recommendations with urgency in order to avoid further harm to people with ME and to those with long COVID who may develop ME, as described in this article.
#MEAction Scotland believes that an absolute priority for development relates to the training and education of healthcare students and professionals. The recommendations around the provision of services, including consultant-led, multidisciplinary teams will only work if the staff in those services have received appropriate training.
What should happen now?
The report makes difficult reading for those who have ME or care for someone with ME. It illustrates how little has been done, not just in the past 10 years, but in the 20 years since the first formal report on the development of ME services in Scotland in 2002 (see link below).
The 26 recommendations reviewed in the briefing cover: how to define ME/CFS, epidemiology, evidence for clinical guidelines, the development of a tiered model of care, the development of education/training and widening the research base.
Recommendations around definitions and clinical guidelines have been updated with a suggestion that they should be addressed once the NICE guideline on ME/CFS is published in April 2021. Based on the draft NICE guideline, this seems a sensible approach and we particularly endorse a recommendation that a SIGN guideline on ME/CFS should be considered in Scotland.
Education of students and healthcare professionals is the priority for action. The recommendations on the development of multi-disciplinary teams are clear, but they cannot be implemented unless staff have received training in ME. The Scottish Government has provided Action for ME with funding to work with partners (including #MEAction Scotland) to disseminate Dr Nina Muirhead’s CPD module in Scotland, but significant further resources are required if all staff are to be effectively trained. We particularly welcome the recommendation that independent ME organisations should be involved in developing education packages.
Another key issue is the recommendation for the development of consultant-led services supported by multi-disciplinary teams. Unlike for other illnesses, there is no existing team of medical and nursing healthcare professionals or allied healthcare professionals to assess, diagnose and support people with ME. Many are left to manage the condition themselves, even those who are so severely affected that they are housebound or bed-bound (an estimated 25%).
The briefing does not include children and young adults, but recognises that this is an important group to consider, particularly in the remobilisation of health and social care services following the pandemic. We endorse this section of the report and urge the Government to consider this vulnerable group, many of whom face significant difficulties not only accessing health and social care but also in accessing any education, often due to education services and teachers with no understanding of ME and no medical advice.
The lack of support for people with ME in Scotland has been highlighted by patients and organisations for decades. The Scottish Government must now fulfil the pledges it has made to improve treatment and provide the support that people with ME so desperately need.
Jeane Freeman, Cabinet Secretary for Health and Sport, made this commitment at the Petitions Committee meeting on 24th January 2019: “We should not wait until we have a better research base and greater clarity on what treatment options might be appropriate. People are living with ME right now, so we need to look at the work that needs to be done to increase awareness and understanding of the condition and, from that, the care and support that sufferers need.“ The 2010 ScotPHN report and 2020 briefing set out key recommendations that could help fulfil this statement. People with ME cannot wait any longer before these are implemented.
This commitment must be put into action promptly by providing funding for research, effective education of healthcare professionals and specialist services providing care and support for people with ME
Background to the 2021 Briefing
The fight for support for people with ME goes back decades.
The first formal report recommending the development of services for people with ME was in 2002 with the report of the Scottish Chief Medical Officer’s (CMO) short life working group – Outline for Development of Services for CFS/ME in Scotland.
The Scottish Chief Medical Officer said in his Foreword to the 2002 report :
“I believe that NHS Boards in Scotland, and the agencies with whom they work in partnership, will find the (2002) Report gives a sound base, on which together they can develop local services which meet people’s needs. It is clear that this is a disorder which can be recognised, a diagnosis given, a range of interventions agreed upon, with a clear expectation of an improved outcome for most, and support for all.”
Sadly, 20 years on, there is no evidence of progress to meeting the commitment from the Chief Medical Officer.
Helen McDade, now volunteering for #MEAction Scotland, submitted the 2002 petition that led to the setting up of the short life working group and was a Carer representative on the group. She is appalled by the lack of progress made since this report was published: “I am deeply frustrated and infuriated by the lack of progress over decades in medical understanding and no improvement in treatment or care for people with ME. This is particularly unforgiveable because research into the physical dysfunctions underlying the condition has advanced dramatically in recent years. There is no excuse for ignorance amongst health professionals.”
Nearly ten years later, in 2010, ScotPHN was commissioned to conduct a Health Care Needs Assessment on ME/CFS, using as its reference point the 2002 short life working group report. The 2010 Health Care Needs Assessment of Services for people living with ME-CFS concluded “the re-analysis confirmed that the recommendations of the (2002) CMO’s Short Life Working Group have not been implemented widely. This implies that little has changed, that needs are still present and that current service provision at all levels is inadequate.”
In 2018, Emma Shorter from #MEAction Scotland took up the fight and submitted a petition to the Scottish Government highlighting the desperate need for investment in research, effective medical education and access to care for patients. Our evidence submitted to the Petitions Committee included a review of the recommendations of the 2010 health care needs assessment, highlighting that these had not been implemented and calling for a review.
As a result, the Government commissioned the briefing described in this article which illustrates, once again, the disgraceful lack of progress in providing support for people with ME in Scotland.
The summary to the briefing states:
“…. it is recommended that Scottish Government should gather together, and give consideration to, the original HNA recommendations, the findings of the Health and Social Care Alliance Scotland gathering views exercise, the NICE guideline review, and the findings of the rehabilitation framework in order to define next steps in developing and improving services and support for adults and children with ME-CFS in Scotland.”
#MEAction Scotland endorses this recommendation and will work tirelessly with the Scottish Government and other ME organisations and charities to progress the recommendations reviewed in the briefing. We will continue to shine a light on the effect decades of disinterest has had on further generations of people with ME.