An interim cross-government delivery plan on "myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)" has been published by the Department for Health & Social Care. The plan "sets out the current problems to be addressed and agreed actions to drive an expansion of research, better education of professionals, improvements in attitudes towards the condition and improvements to service provision."
We are pleased to have been a part of two of the working groups for this plan, and to have had the opportunity to contribute our comments on the interim plan via a survey, whose closing date is 4 October 2023.
While there are many important areas included in the interim plan, we focused on the action points of "attitudes and education" as this is aligns with our own aims and objectives, but we are pleased to see how other charities, organisations and individuals have been producing some very robust comments on the remainder of the plan.
We have now submitted our comments to the Department of Health and Social Care, which are as follows:
Action point seven: “We will consider how to increase our knowledge of public sector professionals’ current attitudes…”
The language around this action point needs to be stronger than to simply “consider” – there should be a deliverable target set, for example to collect data representing current attitudes, by an agreed date. This data could be collected easily with online surveys, and should be extended beyond public sector professionals to include health professionals in the private sector, particularly physiotherapists who are often utilised in place of public sector services.
Action point eight: “NHS England will develop an e-learning module on ME/CFS, which will be aimed at professional staff working in health and social care services…”
An e-learning module already exists for healthcare professionals - how will this new module differ, or will it build on what has already been produced?
Given the complexities of ME/CFS, and the variance in focus of different health professionals, it would not be possible for a single e-learning module to deliver the required specialist training. We would therefore envisage an e-learning module to provide general awareness of key issues to all health professionals.
More profession-specific competency-based modules should then be produced.
Module content for the general awareness learning should be overseen by a range of health professionals rather than just medics, including allied health professionals such as physiotherapists, occupational therapists, and dieticians. The module will also need to be updated in line with ongoing emerging evidence, so we would question who would be responsible for its regular upkeep?
Action point 9: NHS England and the NHS Health at Work Network will update their webpages on ME/CFS…
We feel the target date of March 2024 is too far away given the new NICE Guidelines have been in print since 2021. Who will be responsible for this update, will the content be made available to stakeholders for review before publication, and who will be responsible for regular updates?
Action point ten: Shared learning hubs / e-learning
We strongly advise that learning opportunities are not limited to medics, and the inclusion of allied health professionals such as physiotherapists and occupational therapists is imperative.
As previously mentioned, the e-learning module would only provide general awareness of key issues. For professionals working in specialist ME/CFS services, this module should be mandatory rather than “encouraged”, alongside targeted specialised training.
We would ask who will provide the content of any e-learning modules or learning hubs, will there be reassurances that this content follows the current evidence base with a biomedical approach, and who will be responsible for ensuring regular updates in line with emerging evidence?
Action point 11: Signposting the e-learning module to special educational needs and disability (SEND) and medical condition organisations for staff working with children with ME/CFS.
This general awareness module should be made mandatory for any professional working with children who have ME/CFS.
We would also highlight that “education” does not just occur in a school building, and that children with ME/CFS may also access education through other means.
Action point 14: The Royal College of Physicians will ensure that their training on ME/CFS keeps pace with research and guidance…
The Royal College of Paediatrics and Child Health, and all bodies governing all Allied Health Professionals, must also ensure training is up to date and relevant for safe and appropriate management of children and adults with ME/CFS. They should be involved in this process and make similar commitments to their training programmes.