Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what assessment he made of the adequacy of NHS provision for young people with (a) complex comorbidities, (b) Ehlers Danlos Syndrome, (c) epilepsy, (d) autism and (e) juvenile systemic lupus.

Integrated care boards (ICBs) have a statutory responsibility to commission services which meet the needs of their local populations. It is the responsibility of ICBs, working with clinicians, service users, and patient groups, to develop services and care pathways that meet patients’ needs.

Supporting children and young people as they transition into adulthood, especially those with long-term or complex conditions, including those with Ehlers-Danlos syndrome (EDS), is a priority for the Government, and we are committed to ensuring that children receive the appropriate care and support whenever they need it.

Our 10-Year Health Plan for England commits to establishing a new radical approach through neighbourhood health services, shifting from sickness to prevention and ensuring that support for children’s health and development is locally accessible. It ensures the support for children and young people as they navigate the National Health Service, and ensures that they feel confident in managing their own health and care from age 16 years old, where appropriate. This will include supporting young people, including those with EDS, as they move from child to adolescent and adult services, ensuring that care is developmentally appropriate throughout.

In addition, a national transition framework is currently awaiting publication. This is to help local areas set up this model or to strengthen an existing one, and the principles of age- appropriate services set out in this document apply to both young people receiving care for the first time and those already on a transition pathway. While the framework focuses on broad principles of transition, future work will focus on specific considerations and conditions.