Teenagers with disabilities lack appropriate support, warns CQC

There is “no excuse” for providers and commissioners of care to ignore national guidance that supports young people who are disabled or have long term health needs move from children’s to adult services, England’s Chief Inspector of General Practice, Professor Steve Field will state today.

The health and social care regulator, the Care Quality Commission (CQC) has found that young people who have physical disabilities or illnesses and so rely on lots of therapies and treatments, are not always receiving the necessary care and support when they move on to adult care services, despite guidance being available for the last ten years.

The process, called “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.

As part of its national report, which the Chief Inspector will launch at a closed event this afternoon, CQC has spoken to people who have experience of the transition process and reviewed a sample of services across the country to find out what works well and what needs to improve.

The regulator has 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.

In response, CQC has set four priorities for action:

• 1.    Commissioners and providers must listen to, involve and learn from young people and their families about what they want from their care
• 2.    Existing national guidance must be followed so that young people are appropriately supported through their transition
• 3.    GPs should be more involved, and at an earlier stage, in planning for transition
• 4.    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 Care Quality Commission, 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.”

As part of CQC’s new approach to inspection which will begin from October, CQC will investigate transition arrangements when it visits primary and community healthcare services. Its findings will be reflected in the overall rating – of Outstanding, Good, Requires Improvement, or Inadequate – that CQC will award to services. These ratings will celebrate best practice and hold providers to account to make improvements.

Minister of State for Care and Support Norman Lamb said: “Young people with disabilities and long term health needs deserve the best possible care which doesn’t reach a cliff edge once they reach 18. The transition process needs to be better. I strongly support the clear statement of principles from the CQC and I welcome the fact that with their new more robust inspection regime, there will be consequences for providers in terms of the rating they receive if these principles are not followed.”

There are more than 40,000 people aged under-18 in England who have complex physical health needs, caused by physical disabilities, special education needs, or life-limiting or life-threatening conditions. This covers over 300 conditions, such as cystic fibrosis, Duchenne muscular dystrophy, rare genetic disorders, cerebral palsy, and multiple disabilities following spinal cord or brain injuries.

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.”

Professor Gillian Leng, Deputy Chief Executive and Director of Health and Social Care at NICE, said: “For many young people on the cusp of adulthood, moving between health and social care services can be a tumultuous and stressful time. NICE is developing practical guidance to supplement existing policy and help health and social care practitioners tackle this important issue.

“It’s vital that services work together and involve young people and their families and carers so that they receive consistent care and support. A poor transition between child and adult services can have a profound and long-lasting negative impact on a person’s life, potentially affecting education and employment opportunities, as well as their long-term independence. The last thing we want is for young people to fall between the gap in child and adult services and not get the support or care they need.”