Care & Support Plans from your doctor: get involved!

Pippa
Feb 16, 2023
2 min read

Updated: Jun 17, 2024

What is a Care & Support Plan?
Have you been offered one? Tell us!
Care & Support Plan template: share your thoughts!
More information

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?

> Click to see the whole list

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:

a medical assessment (including relevant symptoms and history, comorbidities, overall physical and mental health, anything that is known to exacerbate or alleviate symptoms, and sleep quality)
physical functioning
the impact of symptoms on psychological, emotional and social wellbeing
current and past experiences of medicines (including tolerance and sensitivities), vitamins and mineral supplements
dietary assessment (including weight history before and after their diagnosis of ME/CFS, use of restrictive and alternative diets, and access to shopping and cooking).

It should also be personalised. Depending on the person's needs, it could include:

information and support needs
support for activities of daily living
mobility and daily living aids and adaptations to increase or maintain independence
education, training or employment support needs
self-management strategies, including energy management physical functioning and mobility
managing ME/CFS and symptom management, including medicines management
guidance on managing flare-ups and relapses
details of the health and social care professionals involved in the person's care, and who to contact

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

Cartoon of a doctor sitting behind a desk with a laptop on it. A patient is sitting in front of the desk, talking to them. Next to them is another doctor.

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.

Email us about your care and support plan

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.

A doctor is sitting behind a desk, holding a piece of paper and speaking. A patient is sitting opposite, and listening. There is a large potted plant behind the patient.

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:

ME/CFS Care and Support Plan Guidance

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.

Share your feedback here

We really appreciate any time, effort and energy spent on this. Together, we can help shape how doctors support people with ME/CFS.