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Monday 26 September 2016
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Blog: Addressing the needs of ill young people

Blog: Addressing the needs of disabled and ill young people

Ill and physically disabled young people are not always getting the care they need when they approach adulthood, a report from the chief inspector of general practice has revealed

The issue around “transition” – as it’s known in the health and social care arena – isn’t a new one unfortunately. There is plenty of guidance out there on what makes for good transition planning and good commissioning of care.

However, having spoken to lots of people and visited numerous clinical commissioning group areas and other services as part of our review, we have found that this isn’t always being followed – there is a significant shortfall between policy and practice.

As a jobbing GP in Birmingham, I’ve personally spoken to children and young people about their transition experiences. I’ve learned a lot from them and was shocked about what I heard. There seems to be a big difference between person-centred care from children’s services compared to what they experience in many adult services.

We are talking about vulnerable teenagers who often need round-the-clock support – for example, to help them with their mobility, pain management or breathing – because of physical disabilities or other long term health needs. There are more than 40,000 under 18s in England who would fit into this category. They are not always getting the same level of support or choice when they move away from children’s services that often organise and coordinate all aspects of their care to the equivalent adult services; that changes to their care are not being explained to them and their families sufficiently and; that they are not involved in discussions and decisions about what would suit them best.

For young people and their families this is creating confusion, frustration and distress, during what can already be a challenging developmental stage of their lives. Even worse, young people can find themselves without essential care or equipment because of the different ways services are provided, or while funding arrangements are resolved. This is unacceptable. One person summed up their experience by saying, “From the pond you are picked up and put in the sea”. This signals a clear need for action.

Working together

The problem is not incompetent doctors, uncaring nurses or remote social workers. On the contrary, the vast majority of them are highly competent, care deeply and desperately want to help. No, our report describes a health and social care system that is not working and that is letting down many desperately ill youngsters.

Each part of the system, at every level, needs to work together. Planning must start early, and funding responsibilities should be clear. Adult and children’s services should work together and information must be shared routinely so that young people and their parents don’t waste precious time repeating information about their health. Young people must not fall in the gap between children’s and adult services.

As part of the review, we saw some wonderful examples of good transition planning, especially in specific health specialities. People told us that they value having consistent staff members who know about their conditions and care history and that they are given good information about what to expect. This shows us that it can be done.

My report sets four priorities for action, which I urge providers and commissioners to consider.

As part of our new approach to inspection, we will investigate transition arrangements as part of our visits to primary and community healthcare services. Our findings will be reflected in the overall ratings – of Outstanding, Good, Requires Improvement, or Inadequate – that we will award to services. These ratings will celebrate best practice and hold providers to account to make improvements.

This is personal for me as I want to improve care for everyone, regardless of their age or health needs. I hope this report helps to do that.

 

Keep up with the conversation on Twitter: #lostintransition

This article was originally published on the CQC website