Question

After having a nasty viral infection (probably glandular fever) at the beginning of the year I have been struggling to get an explanation from my GP as to why I haven’t got back to normal health. He has now decided that I probably have post-glandular fever ME/CFS. However, my GP admits that he doesn’t know very much about how to manage ME/CFS. I have asked for a referral to a specialist ME/CFS service but it turns out that we don’t have one. I then asked if I could be referred outside the local area to a service that has good reports from people I have heard from. However, I’m finding it very difficult to get this moving because my GP says I can’t choose where I want to be sent. Please could you explain what my rights are?

Answer

It’s worth noting that glandular fever is one of the commonest viral triggers for ME/CFS. It has been estimated that around 10% of people who get glandular fever go on to develop a prolonged post-viral fatigue syndrome, and in some cases ME/CFS.

• We ran a website survey in March 2022 and the top result as a trigger for ME/CFS was Glandular Fever (the Epstein Bar Virus).

The new NICE guideline on ME/CFS makes it very clear that GPs should be aiming to make a diagnosis of ME/CFS once someone has had the four classic symptoms – debilitating fatigue, cognitive dysfunction, unrefreshing sleep, and post-exertional malaise – at 3 months from their onset.

Once a diagnosis has been made in primary care, people should then be referred to an ME/CFS Specialist Service for confirmation of the diagnosis and preparation of an individual care and management plan. So health service commissioners who are responsible for providing referral services have a clear duty to either set them up or to have an arrangement with another service provider who can. When it comes to arranging a specialist referral the NHS makes it very clear that patients have a legal right to choose where they would like to be sent.

This includes NHS hospitals and many private hospitals that provide NHS services. You can choose a hospital or service based on whatever matters most to you – this could include waiting times, quality of service, your previous experience, the opinions of other patients, the location, or your GP’s recommendation.

• There is an NHS leaflet that explains how you should be able to be referred to a specialist/clinic/hospital of your choice. This is especially relevant if there isn’t a local ME/CFS referral service, or the existing one is not functioning properly: If Your GP Refers You … You Can Choose. 
• Please let us know if you have been successful, or not successful, in obtaining a specialist referral outside your local area: Feedback@meassociation.org.uk

See also:

• Medical Matters: ME/CFS Specialist Services.

More information

• NICE Guideline on ME/CFS: An ME Association Summary
  This Free booklet is recommended reading. It lets you know what to expect from the NHS and social care services with regard to symptom recognition, diagnosis, management, referral, and ongoing care and support.
• Care and Support Plans
  This Free booklet examines the potential difficulties establishing ongoing care and support from the NHS and include the 2021 NICE Guideline recommendations for care and support plans and regular reviews in primary care.