Planning for transition for Children with Complex Needs –a work in progress using QI for better outcomes for patients and

families.

Elly Kerr – Specialist Nurse for Children with Complex Needs, Transitions Nurse , Children with Complex Needs Team, Milton Keynes Community Health Services, with thanks to the whole Children with Complex Needs team.

Introduction Aims

The Children with Complex Needs Team look after paediatric patients with complex health needs and life limiting conditions in the community. Our caseload ranges from birth to the age of 19 and children have a wide range of life-limiting and life-threatening conditions. We did not have a standardised procedure for supporting these young people in their transitioning journey to adult services, often only starting to plan for transitions around their 18th Birthday.

This is not in line with NICE guidance which states that planning to support paediatric service users for adult services should start from the age of 13. Transition planning should be an ongoing process, rather than an event.

The delay in commencing transition planning early on has a negative impact in preparing the young person and the family for the move to adult services. The transition between paediatric services can be an overwhelming for our young people and their families and cause feelings such as loss, confusion, lack of continuity which can therefore lead to an impact on health. 1 As a team we are passionate in advocating for those in our care and their families, to ensure a clearer pathway to adult care is set up in order to aid the process and reduce fears/anxieties of parents and carers.

This project began by looking at ensuring that all young people on our caseload were contacted about transition planning from the age of 13. As the project developed, we have started working on a range of new processes which we are putting in place with partners and will refine as part of the next stages of the improvement work that we will continue during 2023.

To increase our rates of transition planning from 2% to 95% for the Paediatric Complex Needs caseload, by March 2023;

To ensure that those young people with the most complex needs are identified and receive the support they need during transition to adult care;

To improve and increase awareness of transitional care processes for young people with complex needs and their families in Milton Keynes;

To ensure better hand over of care from paediatric services, to adult services, with clear processes in place to support critical areas of care and support.

Reviewed what support was in place to support transition in other areas.

• QI methodology to structure our work and track the impact of changes on Transition process development.

• We are testing ideas with 4 PDSA ramps in progress and a fifth planned

• Developed networks with partners across our ICB area.

• Engaged with parents, carers and families through a number of focus groups. We started work in 2022, with the majority of the work being led by one of the Specialist nurses. As we go into 2023, the work is evolving. Sustaining our gains is critical as we move into the next phase of this work. This includes refining new processes which were set up to address gaps in provision (using PDSAs) as well as ensuring full implementation of the approach across the Complex Care Nursing team.

Results

We’ve learned from others to develop our pathway based on good practice.