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.