Being healthy AND being included

For children and young people with complicated health support needs that mean they receive Continuing Health Care funding, there are ways to address ensuring they are healthy and able to take part in school activities. A well-known example from West Sussex, during their work as an SEND Pathfinder, pointed the way some years ago. There are small numbers of similar joined up packages of support in place now elsewhere in the country (although there should probably be a lot more).

In some parts of the country, despite the fact there has been a Right to Have a Personal Health Budget for Continuing Healthcare since 2014 (and to choose to receive this as a Direct Payment), families are still being denied information and the opportunity to think about how they may use one. This means many children and young people missing out on the opportunity of support like that in Amy’s story.

Amy was a young woman attending a mainstream school. Funding for her support was split between school and home where Mum managed a direct payment that funded Amy’s out of school support. However due to Amy’s complicated health support needs Mum was never confident in the support being offered at school; this often meant if Amy was having a bad day then Amy would stay at home. In the end it became a very combative relationship between school, services and family. Turning all the funding into an integrated personal budget, enabling Mum to manage this as a direct payment package of support that meant the same skilled support in the classroom as at home, changed everything radically. Amy’s attendance went up and general health improved, Mum relaxed as her worries had been listened to and acted upon and she was much more comfortable knowing what support Amy was having, and the difficult relationship between school, services and family improved greatly.

The potential of integrated personal budgets to deliver joined up support has never been given the attention it should, not only for young people with complicated physical health support needs but those with mental health challenges, autism and complicated home and family lives. It is continually trumpeted as part of the solution to the rising numbers of children and young people with learning disabilities, autism and/or mental health support needs being placed away. Yet across the country there has been slow (if any in some places) uptake of the opportunities supported in the Children and Family Act 2014 being driven by NHS England’s move to more personalised care.

For example, a young person allocated a number of hours social care Direct Payment and also a greater number of hours of Continuing Healthcare Support but denied information and possibility of taking the CHC funding as a Direct Payment. The potential pot of hours could have offered a young person with very complicated life support needs the possibility of consistent, familiar and skilled support.

Personal budgets in education, health and social care are only one way of supporting better lives for children and young people with complicated health support needs. It is one way that often shines a light on the local area’s approach to thinking of the ‘whole life’ of a child or young person or if they continue to think solely about their service or departments responsibilities.

I believe that, whether its about integrating funding at individual level using personal budgets or at a commissioning level delivering jointly commissioned support shaped by the local Health and Well-being Board, the key is working together to deliver ‘whole life outcomes’. Doing so challenges social care and education to stop thinking about outcomes linked to their specific stream of funding and understand that their work/funding and provision should all interact to deliver a combination of support, opportunity and provision that enables the child to participate in learning and achieve, as well as maintain a happy and welcoming home life and the best health possible. For example, if you want to be able to make the best of learning opportunities you need to be healthy so you can participate, or you will do better at school if things are happy and welcoming at home.

The over-riding frustration for so many people is that all the laws, guidelines and permissions exist to offer children and young people really good, joined up, personalised and skilled support and yet there remains a paucity of examples of this working in anything other than ‘one-off’ situations. Supporting children and young people to be in the best health they can be is not only the role of health services but of all those involved in their lives. If inclusion is to be really meaningful to each child or young person then all services need to step up and play their part alongside families and partners in enabling children and young people to Be Included and to Be Healthy.

RESOURCES
NHS England www.youtube.com/watch?v=9nG1822k83U

Personal Budgets and the School Day, In Control also cited in a number of evaluation reports produced during the SEND Pathfinder programme 2011-2014

www.england.nhs.uk/personal-health-budgets/personal-health-budgets-in-nhs-continuing-healthcare/

Nic Crosby is the Director of www.gatherbuildwork.net