Together for Short Lives
Call the Helpline 0808 8088 100

Leading a programme for change

News and comment

We are now one year into the Improving Transitions for Young People Programme, which has funded ten projects to pilot new ways to address the cliff edge in care experienced by young adults with life-limiting conditions in their transition from children’s to adult services.

With a focus on innovation and capturing learning, the Programme aims to test new approaches to smooth the process of moving to adult services. The funded projects are distinct and varied in nature and all present something new to test.

The ten funded projects are:

  • Volunteering Matters: The Futures project aimed to support young people in their last year at school and to match them with a trained volunteer to explore opportunities for them to sample life in the workplace through skills training and/or work placements. This project was funded in round 1 and has now finished. Key learning from this project can be found here.
  • Martin House & St Leonard’s Hospice: The Expanding Worlds project works collaboratively with young people to identify the areas of biggest challenge and need for them in their move into adulthood, across health, emotional well-being, social, housing, work and leisure.
  • Royal College of GPs: The Developing Positive Transitions into Primary Care project will support GPs to make improvements to the service they are able to offer to seriously ill young people, and communication between the primary and secondary care teams, young people and parent carers.
  • Sexuality Alliance (Hospice UK): The Talking about Sex and Relationships project have co-produced short videos with young people and will develop a resource for professionals to support conversations about sex and relationships.
  • St Oswald’s Hospice: Engaging GPs – Improving Outcomes is a pilot to develop and test systems to enable collaborative working with GP’s supporting young adults with palliative care needs.
  • Council for Disabled Children: The Expert Parent Programme is a series of co-produced workshops for parents/carers of children with life-limiting conditions facing transition. The project will adapt and evaluate bespoke on-line learning modules.
  • Ty Hafan: The Transition Hubs project aims to provide a holistic one-stop point of contact where young adults can receive support with transition from paediatric to adult palliative care. Young people with palliative care needs will be able to access a ‘Hub’ hosted at their local adult hospice.
  • Sunderland Royal Hospital NHS Trust: Teen matters: Transition: Each and Every Need Matters is a project to evaluate the current transition pathway and the development of tools to support its implementation for young adults with complex health needs.
  • St Elizabeth Hospice: Transforming transition experiences of young people in Suffolk will pilot a coordination role, working across the CCG, CHC team, children and adult hospice, hospital, neuromuscular service and community teams.
  • Royal Devon & Exeter Hospital Trust: The Pathways Clinic will transfer young people with complex needs from a consultant paediatrician to a consultant adult physician and test to see if the ‘umbrella of care’ model, enjoyed in paediatrics, will continue into adulthood, including those times when admission to hospital may be necessary.

Many of the challenges of transition have already been well documented in research. Through this Programme we wanted to pilot new interventions and learn more about the factors that hinder or promote successful outcomes for young people with life-limiting conditions making the transition to adult services. Sharing learning is central to the Programme, with the funded projects coming together twice a year to reflect on and discuss successes and barriers they have faced. As an innovation fund, the importance of capturing learning about what doesn’t work is just as insightful as the learning about what does work.

Whilst the final evaluation of the Programme won’t be published until the autumn of 2021, we wanted to share with you some of the learning that is starting to emerge.

1. The very varied health conditions and individual needs of the young people involved means that interventions need to be personalised and tailored to them. There needs to be recognition that this is often both costly and time-consuming but will in the long-term lead to better outcomes.

2. One of the key pieces of learning from a project delivery perspective is the importance of staff continuity. There can be lengthy delays if new staff need to be recruited part-way through a project so this needs to be built into a risk register and the timeline for the project.

3. For projects working within a large infrastructure such as an NHS Trust, there can be layers of bureaucracy that slow progress and potentially have an adverse impact on the ability to be innovative. Sufficient time needs to be factored in for various processes, such as gaining ethical approval for any research-related activity, recruiting project staff or signing off press releases

4. When working with young adults with complex life-limiting conditions and often PMLD it’s important to keep in close communication with parent carers and to try to get the balance right between empowerment and safeguarding of the young person so that trust is built with them.

5. The lack of appropriate and accessible facilities really limits opportunities to deliver services to young adults. This can impact on opportunities for short breaks, carrying out group activities or holding one-to-one health consultations.

6. Engagement with key partners, especially GP’s, remains a real challenge, largely because of pressures on their time. With statutory services stretched to breaking point, it’s been important to try and ‘sell’ their involvement in transition as ‘essential core business’ rather than ‘nice to do’.

It’s been very heartening to hear from all the project teams that having reached out to a range of service providers in their regions there is a tangible sense that the issues faced by young people at transition are being talked about more openly. The Programme is enabling conversations with responsible agencies to open up and to begin to shine a spotlight on the challenges that they need to overcome.

Together for Short Lives will publish a full evaluation of the Programme in Autumn 2021. If you would like to be kept informed of the Programme and other developments in transition, please email and ask to subscribe to Transition Matters, our bi-annual transition e-newsletter.


Leave a comment