Patient-centred care

Patient-centred care

This guideline offers best practice advice on the care of people with CFS/ME.

Treatment and care should take into account patients' individual needs and preferences.

People with CFS/ME should have the opportunity to make informed decisions about their care and treatment. For children and young people with CFS/ME, this will depend on their age and capacity to make decisions. It is good practice for healthcare professionals to involve the young person's parent(s) or guardian(s) in the decision-making process.

If patients do not have the capacity to make decisions, healthcare professionals should follow the Department of Health's advice on consent and the code of practice that accompanies the Mental Capacity Act. In Wales, healthcare professionals should follow advice on consent from the Welsh Government.

Good communication between healthcare professionals and people with CFS/ME is essential. All healthcare professionals should have a high standard[1] of consultation and communication skills and use a consulting style that enables people with CFS/ME (and their families and/or carers as appropriate) to participate as partners in all decisions about their healthcare, taking fully into account their socioeconomic status, culture, cognitive ability and any specific needs.

Communication should be supported by evidence-based written information tailored to the person's needs. Treatment and care, and the information people with CFS/ME (and their families and carers as appropriate) are given about it, should be culturally appropriate. It should also be accessible to people with additional needs such as physical, sensory or learning disabilities, and to people who do not speak or read English.

Carers and relatives should have the opportunity to be involved in decisions about the patient's care and treatment, unless the patient specifically excludes them.

Carers and relatives should also be given the information and support they need.

Adult and paediatric healthcare teams should work jointly to provide assessment and services to young people with CFS/ME. As part of the transition process from paediatric to adult services, diagnosis and management should be reviewed and, throughout, there should be clarity about who is the lead clinician to ensure continuity of care.

Transitional care should be planned and managed according to the best practice guidance described in Transition: getting it right for young people.

[1] The standards detailed in the video workbook 'Summative assessment for general practice training: assessment of consulting skills – the MRCGP/summative assessment single route' are a good example of standards for consulting skills.

  • National Institute for Health and Care Excellence (NICE)