1. What is a Care & Support Plan?
The latest NICE guideline for ME/CFS (2021) recommends that adults should be offered a care and support plan, which is reviewed once a year. But what actually is that?
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The guideline says that it should be a collaborative document based on a holistic (looking at the whole of someone's health) assessment.[1] It should include:
It should also be personalised. Depending on the person's needs, it could include:
It also states that the doctor should recognise that the person with ME/CFS is in charge of the aims of their care and support plan.
The person (and family/carers) should be given a copy of the plan, and it should be shared with their GP too.[2]
So a care and support plan should be:
collaborative
holistic
personalised
reviewed yearly
led by the person with ME/CFS
shared with the person and their GP
2. Have you been offered one? Tell us!
It's been 16 months since the new NICE guideline was published - but has anyone been offered the recommended plan yet? Here at Sheffield ME & Fibromyalgia Group, we're keen to know:
Have you been offered a care and support plan by your doctor?
Does it meet your needs?
If you've been offered one, we would be very grateful if you could share it with us, along with your views on the process and the plan itself. This will help us monitor how doctors in the region are putting the new NICE guideline into practice.
You can get in touch with us by clicking the button above, or emailing us directly at info@sheffieldmegroup.co.uk.
We'll always make sure your data is anonymised and stored securely, and only used in ways you give us permission for.
3. Care & Support Plan template: share your thoughts!
The British Association of Clinicians in ME/CFS is drafting guidance for clinicians on writing care plans for people with ME/CFS - and we've been invi to share your thoughts! Can you help out?
You can view the draft here:
Care and Support Plan template for adults: pages 14-21
It's a big document, and you don't have to read and respond to it all. Even feedback on a section or two is helpful! This will be fed back to the people writing the guidance. Click the button below to share your feedback.
We really appreciate any time, effort and energy spent on this. Together, we can help shape how doctors support people with ME/CFS.
4. More information
Read a 3-page summary of the NICE guideline from our Chair of Trustees, Carolyn
Download our one page information sheet for GPs on the NICE guideline
Find out more details on the NICE guideline from our website
Watch our talk from Dr Charles Shepherd of the ME Association: Making the new NICE guideline work for people with ME
Thank you!
- SMEFG Team
References
[1] Care and Support Plan | Terms used in this guideline | Recommendations | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance | NICE Accessed 16/02/2023
[2] Accessed 16/02/2023 1.5 Assessment and care and support planning by an ME/CFS specialist team | Recommendations | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance | NICE Accessed 16/02/2023