There is growing evidence of the number of young people living with life-limiting conditions in Scotland (CHiSP Study, 2015). There is also evidence of the unmet needs of young people living with a life-limiting condition into adult years with poor outcomes for young people with complex and life-limiting conditions (From the Pond into the Sea: Children’s Transition to Adult Health Services. Care Quality Commission, 2014).
As young adults transition from paediatric services, adult hospices may have a role to play in supporting this. As highlighted within ‘The future of hospice care: implications for the children’s hospice and palliative care sector’ (2013), the services and care offered to these young people need to be quite different from the care currently on offer.
In recognition of this and the fact that supporting smoother transitions for young adults living with life-threatening or life-limiting illness is becoming increasingly important for all health, social and education practitioners, The Prince & Princess of Wales Hospice wanted to start a dialogue on improving transitions through networking; greater understanding of each other’s professional roles and an opportunity to work collaboratively for the benefit of young adults and their families.
In partnership with the Village Storytelling Centre, and supported by Scottish Transitions Forum and Children’s Hospice Association Scotland (CHAS), the innovative half-day workshop used applied storytelling techniques to examine ways of supporting these transitions.
With the needs of young adults at the forefront of the discussions in a packed room at the Scottish Youth Theatre in Glasgow, healthcare professionals from across health, social, education and the third sector in Scotland were encouraged to share experiences on transitions, looking at best practice examples and examining greater ways of working together to support more positive experiences for the young adults and their families.
Scott Richardson Read, the policy and development worker for Scottish Transitions Forum, discussed his experience of the workshop:
“We work across Scotland with additional support needs but it has been a really good opportunity to bring together people with specialist interest in life-shortening conditions in palliative care,” he said.
“To get them all in one room to talk about it together and let them flex their creative muscles has been absolutely fantastic. There have been a lot of good ideas. For me it’s important because we have such a broad focus so we very rarely come in and look at one clear area of concern.
“Having the opportunity to hear people who have that background talk about life-shortening conditions and bringing together artists and storytellers as well as nurses and policy people has been really interesting.
“I’m looking forward to see how we can include it all in our work going forward. I’m really hopeful there might be a community of practice that develops on the back of this that specifically focuses on life-shortening conditions and transitions for people in Scotland.”
The workshop centred around a scenario focusing on the possible problems that may need to be addressed for the successful transition of a young person to adult services. Things to consider were relationships with the patient, how they affect the patient and what can be done to support them.
Suzel O’Donnell, principal support teacher for additional support needs in the Angus area, highlighted why this approach was helpful:
“It has been really helpful to make sure that you are working on the needs of the child, you are aware of the relevant people involved, and how much we should hear the young person. To move forward and support in the best way we need to have a good relationship with all involved and support the one who really needs it – the young person,” she said.
“We all work with the same professionals – nurses, social workers and staff from education – and all want to have a positive outcome for the children and young people we work with. There is always something different that you take away from events like this that we can share with our own staff.”
The lightbulb moment
For me it was just so amazing to see different professionals in a room representing their own area of expertise and hearing about their experiences. It gave a different prospective to lots of the discussions at the tables.
The lightbulb moment came when a participant at the end highlighted how refreshing it was for her that an adult hospice was actually taking the lead on trying to improve transitions and that the big push was not coming from paediatric services – for me that was a proud moment I hadn’t considered the significant of this prior to the event.
Following the workshop actions and recommendations for the way forward will be circulated to the participants with the suggestion of the development of a community of practice group to support greater communication, collaboration and partnership working throughout Scotland.
This article originally appeared on the The Prince & Princess of Wales Hospice blog.