The ME Association is working towards a better future for those with ME/CFS and Long Covid
We are committed to working with the NHS and social care providers to improve healthcare for people with ME/CFS and Long Covid.
We believe that everyone, regardless of where they live in the UK, should have equal access to the right care and support to manage their ME/CFS with the best healthcare available.
There are around 250,000 people in England and Wales with ME/CFS and around 1.8 million with Long Covid plus thousands more who remain undiagnosed.
The Health and Social Care Pilot Project
We have initiated a pilot project in Buckinghamshire, Oxfordshire and Berkshire West and will be engaging with local NHS and social care service providers, the local authority, Healthwatch, MPs and Councillors, current services, local support groups and residents. If the pilot is successful, we shall look at extending into other counties of the UK.
We will be considering national campaigns to support our aims but given how the structure and provision of healthcare services differs so much across England and into Wales, Northern Ireland and Scotland, we determined the greatest need is to engage at the local level if we are to bring about the kind of change that is important to local people.
We predicted the project would be a learning experience and it is. Although we are only just starting this 12 month pilot we are beginning to understand some of the challenges that the NHS and local authority face and are working to ensure that ME/CFS and Long Covid receive as equal a consideration as other chronic illnesses when it comes to the provision of healthcare.
In addition, we are being more proactive on behalf of individuals who encounter healthcare difficulties. This has meant engaging directly with a GP, consultant, specialist service or clinic, or a local authority about the specific problems an individual can encounter either around the NICE Guideline or in general about the condition.
As the project moves forward we will continue to monitor outcomes, engage with local support groups and residents and ensure that the project is resourced effectively.
We are dedicated to making sure that individuals have access to essential health and social care services in every region.
We will assist current services in implementing the latest NICE Guidelines. Publication of the delivery plan later this year will highlight the importance of following the guidelines
Improve the pathway between primary care providers and secondary care services to ensure individuals receive the comprehensive care they need to manage their conditions effectively.
We will engage with people at a local level and learn from them what is needed to overcome barriers
We're currently facing our greatest challenge: Improving healthcare equality. We're exploring different ways to maximise impact. Although services will take a top-down approach once the delivery plan has been published, we believe starting at the local level would be most effective. Our top priority is to determine patient demand for specialist services. When collaborating with BOB ICB and the healthcare commissioners, it is essential to initiate discussions that will lead to increased provision of services in accordance with NICE guidelines.
The ME Association have produced a summary of the 2021 Nice clinical guideline for ME/CFS with key recommendations and extracts taken from the full NICE clinical guidelines.
About us
Meet the team
Russell Fleming
Head of Special Projects
Karren Winters- Cavalot
Head of Health and Social Care
Charlotte Rawlinson
Project Officer
Lucy Goodfellow
Project Officer
Contact Us
Contact the Health and Social care team health@meassociation.org.uk
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 healthcare and the quality of life for 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.
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 Scott
Our vision
“We want to ensure every healthcare 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 review all existing services in the NHS and Social Care providers to ensure patient outcomes align with best practices and advice, care, and management of people with ME/CFS is evidence-based and adheres to NICE guidelines.
Our goal is to ensure that individuals with ME/CFS have access to essential health and social care services regardless of where they live.
We aim to bridge the gap and provide support where needed most. We aim to increase the number of clinics dedicated to ME and Long Covid while ensuring that ME/CFS and Long Covid receive as equal consideration as other chronic illnesses regarding healthcare provision. By involving patients in every step of the process—from initial planning to ongoing feedback—we ensure that their real-world experiences shape the services provided.
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