This guideline offers best practice advice on the identification and care of people with FH.
Treatment and care should take into account patients' needs and preferences. People with FH should have the opportunity to make informed decisions about their care and treatment, in partnership with their healthcare professionals. 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.
If the patient is under 16, healthcare professionals should follow the guidelines in the Department of Health's Seeking consent: working with children.
Good communication between healthcare professionals and patients is essential. It should be supported by evidence-based written information tailored to the patient's needs. Treatment and care, and the information patients 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.
If the patient agrees, families and carers should have the opportunity to be involved in decisions about treatment and care.
Families and carers should also be given the information and support they need.
Care of young people in transition between paediatric and adult services should be planned and managed according to the best practice guidance described in Transition: getting it right for young people (2006).
Adult and paediatric healthcare teams should work jointly to provide assessment and services to young people with FH. Diagnosis and management should be reviewed throughout the transition process, and there should be clarity about who is the lead clinician to ensure continuity of care.