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United for young adults living with complex and life-limiting conditions

News and comment

St Oswald’s Hospice, based in Newcastle upon Tyne has launched a pilot outpatient clinic to support young adults with complex and life-limiting conditions who are moving from children’s to adult health services, as well as GPs and other healthcare professionals leading on the young person’s care. Dr Jo Elverson from St Oswald’s explains more.

St Oswald’s short break service opened to care for children up to age 18 with life-limiting conditions in 2003. Noticing a gap in provision, the service extended to care for young adults aged 18-25 years old and has since been a source of independence and peer support for these young people.

The families using our short break service often tell us we’re a lifeline to them and their children, providing services that support our vision of ‘quality time for everyone’.

Over the last eight years we have felt there were many more young people in our region who needed a different kind of support. “I think the main problem I had when I was going through the transition period is I didn’t have any information about how it worked and what was involved,” one young adult with a life-limiting condition told us when reflecting on their experience – “it was just a bit of a shock to move from having so much support from a very small group of people to not as much support from a very wide amount of people” they said.

And so, with feedback like this in mind, we started to look for ways to expand our service.

Focus on GPs

In so many situations, a person’s GP is a valuable source of continuity, holistic care for the whole family and a conduit for accessing other services. These are such key needs for young people reaching transition, and yet many barriers exist that prevent them from developing constructive and trusting relationships with their GPs.

We have found that many GPs feel out of their depth and overwhelmed when looking after young adults with complex conditions – they worry that they might miss something and don’t always know where to go for advice and support.

We wanted to build a service that would support and empower GPs to provide care for young adults and would help young adults and their families to engage with their GPs. We are delighted to receive funding from Together for Short Lives’ Improving Transitions Fund to develop this service.

We have found that many GPs feel out of their depth and overwhelmed when looking after young adults with complex conditions

The key to the success of this project is collaboration and partnership. We want to genuinely meet the needs of the professionals as well as the young adults and their families.

Launch today

In view of this, over the last few months we have been spreading the word – meeting with groups of professionals from different backgrounds and specialties, promoting the service and listening to their thoughts and feedback. The culmination of this is the project launch event today, 3 April.

We are delighted to have representatives from many disciplines attending our event including: paediatric neurology, community paediatrics, learning disability teams, community nurses, GPs, anaesthetists, respiratory and palliative medicine physicians, physios, social workers and local authority and CCG representatives. This is an incredible opportunity not only to raise awareness of our own project, but also to learn about each other’s work, identify the gaps in service across the region and to build a network of support for our young adults.

We are united in our vision to make a difference for young adults, and we hope that as we build and evaluate our new service, strengthened and supported by these fantastic partners in our region, and sharing our learning widely, that this difference will be felt, not only by our own young adults, but will also contribute to other services across the country.

Dr Jo Elverson is Consultant in Palliative Medicine at St Oswald’s Hospice and is the project lead. St Oswald’s is one of the eight organisations who have received funding from the Together for Short Lives’ Improving Transitions for Young People Fund


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