NICE ME/CFS draft guideline: annual reviews of management plans

The draft NICE guideline is open for consultation until December 22nd 2020.

Contact the helpline or use the contact form on this website with your comments for inclusion in the WAMES response.

You can read the draft guideline here

Read excerpts from the guideline here on our blog. Today we highlight the recommendations for an annual review of an adults’ management plan:

1.14 Review (p39)

1.14.1 Offer adults with ME/CFS a review of their care and management plan in primary care at least once a year (see recommendation 1.14.3 for what to review).

1.14.2 Arrange more frequent primary care reviews for people with ME/CFS as needed, depending on the severity and complexity of their symptoms, and the effectiveness of any symptom management.

1.14.3 When undertaking a review in primary care, ensure you have access to the person’s management plan and (if relevant) discharge letter from the specialist ME/CF team. As part of the review, discuss with the person with ME/CFS (and their family members and carers, as appropriate) and record as a minimum:

• their condition, including any changes and the impact of these, including what can and cannot be achieved
• symptoms, including whether they have experienced new symptoms
• self-management − ask about activity management strategies
• who is helping them and how they provide support
• emotional and social wellbeing
• any future plans − ask if the person is considering any changes or they have any challenges ahead.

1.14.4 Refer the person with ME/CFS to their named contact in the specialist team if there are any new or deteriorating aspects of their condition.

1.14.5 Consider seeking advice from an appropriate specialist if there is uncertainty about interpreting signs and symptoms and whether a referral is needed.

Children and young people

1.14.6 Offer children and young people with ME/CFS a review of their care and management plan at least every 6 months (see recommendation 1.14.3 for what to review).

1.14.7 When deciding on how often reviews or reassessment might be needed for children and young people with ME/CFS, take into account:

• their developmental stage
• transitions, such as changing schools or exams
• the severity and complexity of symptoms
• the effectiveness of any symptom management.
• 1.14.8 Ensure reviews are carried out or overseen by a paediatrician with expertise in ME/CFS. Involve other appropriate specialists as needed. Also see recommendation 1.1.7 on ensuring the child’s voice is heard and on involving their parents or carers. (p5)

Why the committee made the recommendations (p70)

The evidence showed that people with ME/CFS did not always receive follow up or review of their care, but those who did valued this. This reflected the committee’s experience, so they recommended at least annual reviews for adults. The committee outlined areas for discussion during the review, including asking people how much support they had to carry out their activities of daily living. This was because, in the committee’s experience, this is an area often overlooked and the input of family and carers is often not acknowledged. The committee noted that if any problems are identified advice should be sought from an appropriate specialist.

The committee agreed that children and young people need more frequent review to take into account changes in their ME/CFS as they develop. They also wanted to highlight the importance of involving a paediatrician.

How the recommendations might affect practice

There is variation in practice and some people with ME/CFS, including those with severe and very severe ME/CFS, do not get a clinical review routinely, so for some this will be a change in practice. These recommendations are in line with other long term conditions and support equity of access to care for people with ME/CFS.

Routine follow-up might not be present everywhere but most people with ME/CFS already have regular contact with their primary care teams, so there is not expected to be a large resource impact.