Our Work in Health and Social Care

81% of unpaid carers are usually partners or spouses, and 16% are parents or children

Social Care

We want to acknowledge and support the crucial role that family members play in caring for people with ME/CFS and Long Covid. They are often the primary caregivers, helping their loved ones to maintain independence where possible, while trying to get the kind of healthcare that is most needed.

NHS Continuing Healthcare Funding

People who have a disability or a complex illness are entitled to apply for and if successful receive a fully funded care package. NHS Continuing Healthcare funding is available to adults living in England who have particularly intense, complex, or unpredictable care needs. Importantly, unlike local authority funding, it is not means-tested.

The Continuing Healthcare (CHC) Checklist is the first step in determining whether you are eligible for NHS Continuing Healthcare. This initial assessment is conducted by a nurse, doctor, social worker, or other qualified healthcare professional who will briefly evaluate your care needs. If you qualify you should be referred for a full CHC Assessment.

A Continuing Healthcare Assessment will be carried out by your local Integrated Care Board (ICB).

NICE Guideline

We lobbied the National Institute for Health and Social Care Excellence (NICE) when we had a clinical guideline that was unfit for purpose. This resulted in a full review in 2018 and after a thorough consideration of the research evidence and of expert clinical and patient opinion, a new guideline on ME/CFS was published in October 2021.

The charity fully endorses the new NICE Guideline (2021) on ME/CFS. We believe it provides a crucial set of clinical recommendations that, if implemented effectively, will improve health and social care and the quality of life of those affected. Recognising ME/CFS early, receiving an accurate diagnosis, and being promptly referred to an ME/CFS specialist service that has adopted the NICE Guideline recommendations offers the best chance for an individual to learn safe and effective ways of living with the condition.

The Department of Health and Social care will be publishing their delivery plan on ME/CFS later this year that will reinforce the need for improved access to quality care and support.

Read More: APPG Delivery Plan

“It is now a priority for the Department, and it is our intention to publish a response in the coming months. The consultation responses, along with continued close engagement with stakeholders, will inform the development of the Final Delivery Plan, which we aim to publish in the winter of 2024/25″

– Baroness Merron

“We want to ensure every health and social care provider has an up-to-date, evidence-based framework for treating ME/CFS and Long Covid”

We are now working hard to engage with existing services in the NHS and with social care providers to try and ensure that the care and management of people with ME/CFS and Long Covid is evidence-based and adheres to the NICE guideline recommendations.

Our goal is to ensure that individuals with ME/CFS and Long Covid have access to essential health and social care services regardless of where they live in the country.

We aim to bridge the gap and provide support where it is most needed.

We aim to increase the number of services dedicated to ME/CFS and Long Covid while ensuring that these conditions receive as equal consideration as other chronic illnesses in terms of healthcare funding.

By involving patients and carers in every step of the process — from initial planning to ongoing feedback — we hope to ensure that their lived experiences will help to shape healthcare services in the future.