Across the UK, there are growing reports of ME/CFS specialist services being reduced or closed, sometimes without public consultation or patient engagement. Recent proposals, including those in Coventry and Warwickshire, have raised serious concern [you can read about this closure in our previous blog post – Coventry and Warwickshire service closures].
This is particularly worrying given that people with ME/CFS already face:
- Limited access to specialist care
- Long waiting times
- Regional inequalities in provision
- Little or no support for severe or housebound patients
Why this matters
NHS organisations, including Integrated Care Boards (ICBs), have a legal duty to involve patients in the planning and development of healthcare services, including when changes to services are being considered.
Section 14Z45 of the National Health Service Act 2006 (as amended by the Health and Social Care Act 2012) requires NHS bodies to make arrangements to involve service users, carers and representatives in decisions about:
- The planning of services
- How services are delivered
- The range of health services available to them
Impact on patients
ME/CFS can be a severely disabling condition, with around a quarter of people significantly affected.
Reducing already limited services risks:
- Leaving patients without support
- Worsening health outcomes
Take action
If services in your area are being reduced or closed without patient and carer involvement, you can:
- Contact your local MP
- Ask if a public consultation has taken place
- Request any details of equality and quality impact assessments
- Ask how patients and carers were involved
Conclusion
At a time when national policy recognises the need to improve ME/CFS care, closing services without consultation risks worsening healthcare provision for patients and increasing health inequalities.
If this is happening in your area, please contact the healthcare team to raise concerns at health@meassociation.org.uk.