What is the challenge your project is going to address and how does it connect to the theme of 'How can we improve across system boundaries?​

Transition to adult services represents a significant hurdle associated with preventable deterioration in patient outcomes. Those with life-limiting conditions have an extensive paediatric team supporting them however often find it impossible to navigate adult services to meet their needs.

Together for Short Lives and NICE guidelines recommend structured transition pathways to empower young people and their families. These pathways prompt teams in communication, individual patients’ needs, and referrals. Structured transition facilitates the flattening of boundaries between paediatric, adult, statutory, hospice, and voluntary sectors.

Currently, we have no formal transition pathway. However, we are working in partnership with the Ready, Steady, Go (RSG) pathway development group.

The Ready, Steady, Go programme has been readily implemented in other specialities resulting in improvement in meaningful outcomes.

A network transition nurse will develop the multi-stakeholder working group strategy to embed structured transition in collaboration across sectors.

What does your project aim to achieve?

Aim: To deliver a safe and seamless transition from paediatric to adult palliative care services for young people with life-limiting/life-threatening conditions in Wessex through the introduction of a structured programme.

Objectives:

• Employ a Wessex Children’s and Young Adults Palliative Care Network Transition Nurse.
• Develop and implement the Ready, Steady, Go pathway in the Network.
• Evaluate the Ready, Steady, Go pathway and resources in this setting through prospective data collection, and stakeholder feedback in an iterative developmental cycle.
• Identify service, training and education gaps, and develop resources to support these.
• Develop a sustainability plan for futureproofing of the programme.

The project will deliver structured transition to empower young people and families to improve meeting of care needs.

How will the project be delivered?

A multi-stakeholder working group will deliver the project, including palliative care, transition and RSG experts, including utilisation of NHS IT security requirement approved patient and staff electronic resources, accessible across NHS and voluntary sector. These incorporate audit features, including patient feedback, supporting service evaluation.

The Transition Nurse will be supported to:

• Review previous cases transferred to adult palliative services prior to the introduction of RSG. This will include baseline data collection; gaining stakeholder feedback (questionnaires, storytelling); recording and analysing any clinical incidents (consider root cause analysis or similar).
• Conduct a process mapping exercise.
• Roll out the RSG programme within the Network, expanding the caseload in a staggered manner.
• Prospectively collect data, including case studies and patient voice exercises, to evaluate impact using quantitative/qualitative data.
• Audit exercises against agreed standards at 6, 12, and 24 months with improvement cycles (PDSA) for service development.
• A pilot of a Referral Scoring Tool.

How is your project going to share learning?

Hitherto, palliative transition has been focused within oncology, leaving an unmet need in other life-limiting/life-threatening conditions. This project will be for all relevant conditions, acting as an exemplar to other regional networks worldwide.

Regionally, there will be sharing through NHSE regional groups, and the Hampshire and Isle of Wight Integrated Care System has an extensive range of partners who willingly share ideas, innovation and best practice. There is also opportunity to link with Solent Academy of Research and Improvement and Health Innovation Wessex.

Nationally, learning will be shared via NHS Futures platform and Q Community, with targeted support from colleagues within and across the young person’s Palliative and End-of-Life Care community. The TIER Collaborative, which hosts RSG, would host our network’s specific resources, and be a point of national collaboration.

Publication in a peer-reviewed journal, as well as at regional, national and international network and scientific meetings is expected.