NICE ME/CFS draft guideline: communicating information and providing support

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 how information about ME should be communicated and what support should be recommended:

1.6 Information and support (p13)

Communication

1.6.1 Provide information to people with ME/CFS and their families and carers in a variety of formats (for example, written materials, electronic and audio) that can be used both at home and in the clinical setting. Follow the principles on communication, information giving and shared decision making in the NICE guidelines on patient experience in adult NHS services and people’s experience in adult social care services.

1 1.6.2 When providing information for children and young people with ME/CFS, take into account their age and level of understanding, any disabilities or communication needs.

Use interactive formats such as:

• one-to-one or group discussion
• written materials and pictures
• play, art and music activities
• digital media, for example video or interactive apps.

Information about ME/CFS

1.6.3 Give people and their families and carers (as appropriate) up-to-date information about ME/CFS starting from when ME/CFS is suspected. Tailor information to people’s circumstances, including their symptoms, the severity of their condition and how long they have had ME/CFS. Ask people regularly if they would like more information or to revisit discussions.

1.6.4 Explain that ME/CFS:

1. is a fluctuating medical condition that affects everyone differently, in which symptoms and their severity can change a lot over a day, week or longer
2. often involves periods of remission and relapse, although it is less common to have long periods of remission (see the section on managing flares and relapse – p37)
3. varies in long-term outlook from person to person – although a small proportion of people recover or have a long period of remission, many will need to adapt to living with ME/CFS
4. can have a major impact on people’s lives, including their daily activities, family and social life, and work or education, so they may need to adjust how they live
5. can be worsened by particular triggers, for example new infections, physical injury or stressful events, including childbirth
6. may be self-managed with support and advice (see the section on energy management p24).

1.6.5 Explain to children and young people with ME/CFS and their parents and carers that although long-term outcomes are different for everyone, the outlook is usually better in children and young people than in adults.

1.6.6 Give people (and their families and carers, as appropriate) information about:

• self-help groups, support groups and other local and national resources for people with ME/CFS
• advice about financial support, including applying for benefits.

1.6.7 Give families and carers of people with ME/CFS information about the condition and ways they can help the person.

Social care

1.6.8 Discuss sensitively with the person and their family members or carers how social care may benefit them. Explain that it can help the person living with ME/CFS as well as provide a route to support for families and carers through a formal carer’s assessment.

1.6.9 Explain to people and their families and carers how to self-refer for a social care needs assessment from their local authority. Offer to make the referral for them if they prefer.

1.6.10 Advise children and young people with moderate ME/CFS to severe or very severe ME/CFS and their parents or carers that they may be entitled to support from children’s social care as children in need because of their disability.

Supporting families and carers of people with ME/CFS

1.6.11 Follow recommendations in the NICE guideline on supporting adult carers on identifying, assessing and meeting the caring, physical and mental health needs of families and carers.

1.6.12 Advise families and carers about the right to assessment and support for their own needs, as follows:

• parents or carers of children and young people under 16 with ME/CFS, according to the Children and Families Act 2014
• young carers, according to the Young Carers (Needs Assessment) Regulations 2015.

Why the committee made the recommendations (p55)

Qualitative evidence showed that people with ME/CFS valued information from health and social care practitioners in formats that took into account the way symptoms such as ‘brain fog’ affected their capacity to take in and remember information. The committee highlighted formats that were reported as useful.

The evidence showed people with ME/CFS and their families and carers valued general information about ME/CFS that they could use themselves and share with others (families, friends, employers and practitioners), particularly around the time of diagnosis and the early stages of ME/CFS. This enabled them to develop accurate expectations about the future, relieve distress caused by the general lack of information and educate others.

The evidence suggested people with ME/CFS wanted realistic information about what ME/CFS is and how it might affect them in the future, and this formed the basis of the recommendations outlining the key characteristics of ME/CFS. The recommendation noting that the long-term outlook can be better in children and young people was based on the committee’s experience.

The evidence supported the committee’s view that information about ME/CFS and advice about other support is not easily available from health and social care services, and they agreed that people would benefit from information from local and national support groups.

Evidence suggested that people with ME/CFS needed practical support both for themselves and their carers. The committee considered that some people may have reservations about engaging with social care, after experiencing disbelief about their illness and the impact it has on their day-to-day functioning. For this reason, the committee emphasised the need for sensitivity when talking to people and their families about social care support.

The committee made recommendations signposting to different assessments and support that could be helpful. In their experience, health and social care professionals were not always aware what support is available to families and carers of people with ME/CFS, so the committee also referred to the NICE guideline on supporting adult carers.