Prioritising unpaid carers in new approaches to ME/CFS
Dr Siobhan O’Dwyer, a Senior Lecturer in Ageing and Family Care at the University of Exeter Medical School, consulted carers of people with ME/CFS and concluded they had a key role in patient care, which was not fully recognised or supported. She has made a number of policy recommendations.
Policy Recommendations
The recent change in attitudes to ME/CFS is a welcome one, but it may still be decades before biomedical breakthroughs are made or translated into effective, widely available treatments. In the meantime, family carers will continue to provide the majority of care and support for people with ME/CFS, at great cost to their own wellbeing. There is an urgent need to ensure that – in research, policy, and health and social care – carers’ needs, experiences, and expertise are being fully recognised and appropriately addressed.
While the new NICE Guideline and the APPG report go some way to encouraging greater respect for and inclusion of carers, they do not go far enough. They provide little in the way of practical guidance for health and social care professionals seeking to work in genuine partnership with carers. They also suggest referring carers to generic information and support, a strategy that will do little to address the unique needs (or historic mistreatment) of ME/CFS carers and that has, in an under-resourced system, been of little benefit to carers more generally.
Consequently, there is an urgent need to:
- Acknowledge the significant harm that has been done to carers by a health and social care system that has misunderstood and mistreated people with ME/CFS.
- Ensure carers’ voices are included in all policy making about ME/CFS.
- Recognise carers as experts by experience and vital advocates, particularly for those with severe ME/CFS who may be unable to advocate for themselves.
- Ensure health and social care professionals are equipped with the skills and resources to engage in positive working relationships with carers.
- Ensure that the wellbeing of ME/CFS carers is a priority in health and social care provision.
- Ensure that the wellbeing of carers is a priority for ME/CFS research.
