The Health and Social Care Committee commissioned its Independent Expert Panel (IEP) to evaluate the transition from child to adult health and social care services.

The findings from the evaluation align with what we’ve heard from local people. In the podcast series ‘Care access issues for young Disabled people‘, Youth Out Loud! spoke to a young person diagnosed with hereditary spastic paraplegia and ataxia. They explained their experience accessing specialist services, issues with dual diagnosis and navigating the gap between child and adult services.

Transitioning to adult services can leave young people caught between systems that don’t always align. Young people with complex physical and mental health needs often access multiple services which have different ‘cut-offs’ for transition; this leaves them jumping between child and adult specialists, or experiencing many transitions rather than one co-ordinated switch.

Young people who are diagnosed in their teenage years may have only a few months of accessing the dedicated support of children’s services before navigating the transition. Abrupt changes to support can cause undue stress and complicate a young person’s ability to access care.

Based on our local insight, we support the findings in the IEP’s report that points towards redesigning systems to remove abrupt switches from children’s to adults’ services based on age.

Findings from the Expert Panel

The IEP report found systemic issues in how young people are supported to transition, including:

• poor coordination between local authorities, schools, GPs, hospitals, mental health and housing services, with differences in working practices and a lack of interoperability between systems
• failure to identify children’s needs from Year 9 and plan transitions
• significant gaps in data showing transition planning, the outcomes or the resource put into supporting the transition
• inadequate training and protected time for transition within existing job roles
• poor provision of accessible and appropriate information to young service users and failure to involve them in decisions
• variations in eligibility and support when moving from child to adult services, with some NHS trusts and local services providing care for adults from age 16, some 18 and others from 25.

Youth workers were said to provide invaluable support for those aged 11 to 25 and often held the role of a ‘named worker’, but these posts were frequently funded as pilots or through time-limited funding, despite demonstrating value.

Problems around coordination between services are particularly pronounced for young people with protected characteristics, who experience worse outcomes.