This guideline covers support for disabled children and young people with severe complex needs, from birth to 25 years. It aims to encourage education, health and social care services to work together and provide more coordinated support to children and young people, and their families and carers.
January 2023: We updated the recommendations on delegated clinical tasks to replace ‘must’ with ‘should’ and to indicate that employers are health and social care employers. See update information for further details.
The guideline includes recommendations on:
- principles for working with all disabled children and young people with severe complex needs and their families
- identifying needs and involving other services
- education, health and care needs assessments and plans
- personal budgets and direct payments
- improving access to social activities
- supporting parents and carers
- transition from children’s to adults’ services
- organising services, including working culture, training, and running joint services
It also covers specialist support for disabled children and young people with particular needs:
- palliative and end of life care
- communication aids
- environmental adaptations
- travel training
Who is it for?
- Education, health and social care practitioners and service providers
- Local authorities and health commissioners
- Disabled children and young people with severe complex needs, their families and carers
Guideline development process
This guideline was developed by the National Guideline Alliance, which is hosted by the Royal College of Obstetricians and Gynaecologists (RCOG). The guideline was developed with complete independence from RCOG governance.
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
All problems (adverse events) related to a medicine or medical device used for treatment or in a procedure should be reported to the Medicines and Healthcare products Regulatory Agency using the Yellow Card Scheme.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.