Question
I very much welcome the recommendation in the new NICE guideline that everyone with ME/ CFS should have a personalised care and support plan. But is this actually happening in practice anywhere? I have been under the care of both my (very good) GP and a hospital-based ME/ CFS service for several years. But nobody has ever offered to prepare such a plan. And if I did have a care and support plan, who would prepare it and what would it consist of?
Answer
The NICE guideline committee agreed that a very important part of the management of ME/CFS is having a personalised care and support plan. This should be jointly developed by the health professionals involved, the person with ME/CFS, and their family or carer – where appropriate.
This should be done as soon as the diagnosis is confirmed. A copy of the care and support plan can then be shared with the person’s GP and a copy held by the person with ME/CFS. The care plan can also be referred to in situations such as planning an admission to hospital.
The assessment of what level of care and support is required will depend on the person’s severity of ME/CFS and the impact of symptoms and their needs. A medical assessment should be part of the process – which obviously requires access to a medically-trained clinician. Once the care and support plan has been agreed by everyone, it will provide the basis for more detailed assessments and plans such as social care needs assessments, energy management, physical functioning and mobility. This is what should be happening in practice.
However, as you correctly point out, we are still in a position where most people with ME/CFS do not have a care and support plan. So we are working hard with all our various contacts and in the initiatives we are involved with in relation to implementation of the new guideline to get these plans in place throughout the UK.
Section 1.5.2 of the NICE guideline contains a list of specific points that should be included in a care and support plan – depending on your individual needs:
- 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 activity and energy management.
- Symptom management, including medicines management.
- Guidance on managing exacerbations and relapses.
- Details of the health and social care professionals involved in the person’s care, and who to contact.
More information
- Free booklet: We examine the potential difficulties establishing ongoing care and support from the NHS and include the 2021 NICE Guideline recommendations for care and support plans and regular reviews in primary care.
- Please let us know if you have been given a care and support plan and want to pass on any feedback regarding either the preparation or how you make use of it: Feedback@meassociation.org.uk
Other related literature:
Related Categories
MEDICAL DISCLAIMER
Information provided by The ME Association should not be construed as medical advice. Don't assume any new or worsened symptoms are simply the result of having ME/CFS or Long Covid. We recommend that any information you deem relevant is discussed with your NHS GP as soon as possible. It is important that you seek personalised medical advice from the GP who is in charge of your care and who knows you well.