“Most of the services that exist today have not been commissioned to provide a service for the worst affected.”
Russell Fleming, ME Association
Extracts
While some passionate nurses are already working in – and leading – ME/CFS services, they are few and far between, with care mostly delivered by occupational therapists (OTs), doctors, psychologists and dietitians.
The same is true of care for long Covid – a condition that emerged during the pandemic and is increasingly being treated alongside ME/CFS due to their similarities.
However, with ME/CFS and long Covid patients all facing a postcode lottery in access to diagnosis, support and care, and the prevalence of these conditions rising, some people are advocating for nurses to have a greater role.
One proposal is for a new national network of nurses to be introduced for this group of patients, similar to those in place for a range of other conditions, such as cancer and dementia.
Anna Gregorowski, a consultant nurse in ME/CFS since 2004 and chair of the British Association of Clinicians in ME/CFS (BACME), thought that such a network of nurses was an “excellent idea”.
She said the nursing role worked well in these services because of nurses’ ability to work autonomously and part of a team, their focus on holistic and individualised care and their skills in communication and being an advocate for their patients.
Health and Social Care Project
The ME Association has recently launched a health and social care project, with the aim of working with health providers to boost provision and ensure they are adhering to the 2021 NICE guidance.
Russell Fleming, head of project development at the ME Association, said the new NICE guideline drew “a line in the sand” and it meant the charity could now focus on building relationships with providers, rather than fighting for basic recognition of the realities of the condition.
He said a specialist nurse network akin to Macmillian nurses was an idea he had put forward to the charity’s trustees as something it could potentially sponsor.
“I think nurse specialists would have a brilliant role to provide a service for the severely and very severely affected,” he said, adding that they would be particularly valuable for delivering care in the community.
His colleague Karren Winters-Cavalot, who was a nurse for around 17 years before being forced to medically retire due to ME and is now leading the charity’s health and social care project, agreed that the specialist nurse role was an “ideal” one to help address gaps in services.
“To be fair, I don’t understand why there aren’t nurses in pretty much every single clinic,” she said.
Russell Fleming
Head of Project Development,
The ME Association
