Young people with disabilities are not always receiving the necessary care and support when they move from children’s to adult care services, despite guidance being available for the past 10 years, a report has found.
The report by health and social care regulator the Care Quality Commission (CQC) found that there are problems with the transition process with some children’s services stopping before their equivalent adult services have started, that families are confused and distressed by the lack of information and support given to them, and that generally, people’s experiences of this process varies across England.
Transition can be a vulnerable time for young people and their families as they stop receiving health services that they have had since birth or a very young age – for example, to support their mobility, breathing, swallowing, or pain – and move on to the equivalent adult services, which can be structured and funded differently.
In response, CQC has set four priorities for action:
• Commissioners and providers must listen to, involve and learn from young people and their families about what they want from their care
• Existing national guidance must be followed so that young people are appropriately supported through their transition
• GPs should be more involved, and at an earlier stage, in planning for transition
• Services must be tailored to meet the needs of young people transferring from children’s health services and include extra training for healthcare staff, such as community nurses, in caring for young people.
Professor Steve Field, chief inspector of general practice at the CQC, said: “Despite plenty of guidance being available on what good transition planning and commissioning should look like, there continues to be a significant shortfall between policy and practice. There is no excuse for people not receiving the care they need.
“It is unacceptable that young people and their families are being excluded from planning and decision-making about their care and for them to be without essential services or equipment temporarily, while arrangements are resolved.
“While our review found many committed professionals who provide excellent care, there needs to be a system-wide change, with commissioners and providers of health and social care working together at every level.
“Planning and discussions with young people and their families must start early, with clear funding responsibilities and providers and commissioners must listen to what people want from their care. In particular, general practice has a crucial role to play as the single service that does not change when a young person becomes an adult. GPs should be more involved in transition arrangements.
“Collectively, these priorities will stop young people with complex physical health needs from falling between gaps of care and not getting the support they need.”
Quality of life ‘nose-dive’
Disability charities have agreed with the CQC’s call for change. Anna Bird, head of policy and research at Scope, said: “Transition can be a very stressful time for disabled young people and their families.
“Many young disabled people find that their quality of life can ‘nose-dive’ when they move from childhood services into to the adult world. They struggle to get their health needs met – but also to find work, to continue their education and to find a suitable place to live. Without the right support a young person may end up isolated and not making the most of their adult life.
“We need to see a system-wide change, which brings together all the services that support disabled young people and their families – from health and social care through to education, housing and employment. New legislation means that now is the right time to make this happen."
Jolanta Lasota, chief executive of Ambitious about Autism, a charity for children and young people with autism, added: “The CQC’s report… makes for depressing and, unfortunately, all too familiar reading. We know that there are significant problems with the transition between children’s and adult services and some young people fall through the gap at a critical time in their lives. Parents and carers often tell us they aren’t given enough information and support during transition and this isn’t good enough.
“Children and young people with autism are some of the most vulnerable in society and it is vital they continue to receive appropriate services and support as they move into adulthood. They, and their families, need to be involved in the discussions about planning for their future because we know that with the right support they do thrive and achieve.”