NICE draft guidance on assessment & care planning

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 recommendation for a specialist team to confirm the diagnosis, assess needs & help develop a management plan:

1.5 Assessment and care planning by a specialist ME/CFS team (p11)

1.5.1 After confirming a diagnosis of ME/CFS, carry out and record a holistic assessment. This should include:

• a full history (including relevant symptoms and history, comorbidities, overall physical and mental health, anything that is known to  exacerbate or alleviate symptoms, sleep quality and other causes of physical or emotional stress)
• physical functioning
•  the impact of symptoms on psychosocial 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).

1.5.2 Develop a personalised management plan with the person with ME/CFS (and their family members or carers, as appropriate) informed by the holistic assessment. Based on the person’s needs, include in the plan:

• information and support needs (see section 1.6 on information and support)
• support for activities of daily living (see recommendation 1.8.7 on maintaining independence)
• mobility aids and adaptations to increase or maintain independence (see recommendations 1.8.9 to 1.8.11 on aids and adaptations)
• education, training or employment support needs (see section 1.9 on supporting people with ME/CFS in work, education and training)
• self-management strategies, including energy management (see recommendations 1.11.2 to 1.11.10 on energy management)
• physical maintenance (see recommendations 1.11.11 to 1.11.14 on physical maintenance)
• symptom management (see recommendations 1.11.27 to 1.11.50 on managing symptoms)
• guidance on managing flares and relapse (see section 1.13 on managing flares and relapses)
• details of the health and social care professionals involved in the  person’s care, and how to contact them.

1.5.3 Recognise that the person with ME/CFS is in charge of the aims of their management plan. The plan should be mutually agreed and based on the person’s:

• preferences and needs
• skills and abilities in managing their condition
• hopes, plans and priorities
• symptom severity
• physical and cognitive functioning.

1.5.4 Give the person (and their family members or carers, as appropriate) a copy of their management plan and share a copy with their GP.

People with severe or very severe ME/CFS
1.5.5 Offer home visits to people with severe or very severe ME/CFS to carry out their holistic assessment and develop their management plan.

Why the committee made the recommendations (p53)

The committee agreed that the key to managing ME/CFS symptoms successfully is having a personalised management plan, which should be developed as soon as the person’s diagnosis is confirmed. A copy of this plan can be shared with primary care and a copy held by the person themselves and it can be referred to in situations such as planning an admission to hospital. In the committee’s experience, this approach to assessment and planning is common in specialist ME/CFS services.

The committee outlined key areas to assess what support might be needed, based on their experience. The committee noted that the key areas to assess and the support needed will depend on the person’s severity of ME/CFS, the impact of their symptoms and their needs. Someone with mild ME/CFS will not need as much support as someone with severe or very severe ME/CFS.

Once the overall management plan is agreed, it then provides a basis for the more detailed assessments and plans outlined in specific interventions in the guideline, such as social care assessments, energy management, physical maintenance, CBT and dietary management. Each of these assessments and plans outlines the important considerations for each person in these areas of care. Based on the evidence about problems with accessing services, the committee made a recommendation for home visits to people with severe and very severe ME/CFS to carry out the assessment.

The qualitative evidence highlighted the importance of a collaborative relationship between the person with ME/CFS and their healthcare professional, and the committee made a recommendation to emphasise this.

How the recommendations might affect practice (p54)

Carrying out a holistic assessment and developing a management plan are already current practice in specialist services, although there may be more referrals and people to develop plans for. However, having a management plan will facilitate people’s care and lead to better outcomes. If assessment is carried out early and a care plan is implemented, it could reduce resource use in the longer term by preventing progression of disease.

There may be an increased number of home visits for people with severe or very severe ME/CFS. However, this will provide equity of access to care for this group who are usually housebound. The emphasis in this guideline on early diagnosis and referral to a specialist team for a personalised care plan has the aim of minimising the number of people who may progress to severe ME/CFS.