Written by Dr Helena Dunbar, Director of Service Development and Improvement, Together for Short Lives.

We know that the population of young people with life-limiting or life-threatening conditions is growing and that young people are living longer with increasingly complex health conditions. Figures for England show that the overall number of young people/adults aged 14-25 years with a life-limiting condition (LLC) rose from 27,316 in 2009/10 to 38,261 in 2017/18*. Many of these young people are living with increasingly complex needs and co-morbidities. 

Understanding the individual needs of young people, the complexity of their health condition and the impact on them and their families is challenging for service development. Sadly, the services that are needed to provide care, support and life opportunities for these young people have not kept pace**, ***, it is widely recognised that although there are pockets of good practice, general transition from child to adult services in England is often poorly planned, poorly executed, and poorly experienced by children and young people. All too often, these young people find themselves falling through the gaps between children’s and adult services and missing opportunities to achieve their full potential. Young people get lost in transition, becoming increasingly isolated, lacking social, work and academic opportunities, missing out on their independence, whilst their parents get lost trying to navigate a new adult health and social care system. At a critical time in their lives, a lack of age-appropriate support can result in significant gaps in service provision, and families disengaging with the system with a devastating result on the health status of the young person.

The establishment of the Improving Transition for Young People Programme (IT4YPP) followed a four year Transition Taskforce project that was run by Together for Short Lives from 2014-2017****. This UK-wide programme established Regional Action Groups for transition across the country. These groups brought together a range of providers in children’s and adult’s services and built links with services and organisations working in other agencies (social care, education, housing, employment/leisure). The ten projects funded through the Improving Transition for Young People Programme 2018-2022 have improved the situation for many young people and their families who are transitioning into adult life. The ten funded projects (four led by hospices, three by national charities, two NHS teams, one professional body) were distinct and varied in nature and all presented a new service to test new resources that would help services to improve provision for seriously ill young adults and their families. You can read more about the individual projects here. An economic analysis of four of the direct service delivery projects was conducted by the York Health Economics Consortium, the report concluding that all four projects demonstrated substantial benefits in terms of holistic care for young people with life-limiting conditions and support for families in their caring roles.  Seven common outcomes were identified across the four projects:

• Improved coordination of care.
• Increased satisfaction with and awareness of services available.
• Improved wellbeing for young people and their families.  
• Improved multi-disciplinary working.
• Reduced duplication of effort from staff and organisations. 
• Increased familiarity with the adult hospices and staff teams.
• Reduced use of health services by young people and their families.

The report of the YHEC evaluation can be accessed here.

The new edition of Stepping Up sets out standards for good quality support for young people with life-limiting conditions across the three phases of transition, preparing for transition, during the transfer and when settling into adult services. This new edition has been updated with new evidence and includes exemplars from the ten projects funded through the Improving Transition for Young People Programme. The updated Pathway has a greater focus on the role of adult services in supporting transition and was developed in collaboration with Hospice UK, capturing learning from their Transition ECHO project. This new edition also gives practice examples of how joined up working has been achieved in a variety of service examples. 

Stepping Up can be used as framework to develop services for young people and ensure that high quality care is provided for young people with life-limiting conditions and includes standards and goals that can be used as an audit tool to identify areas for service development and for the development of local pathways that will engage with services available locally (Figure 1). The pathway is written for professionals, predominantly for those working in children’s and adult hospice and palliative care services, but also for any professionals who are supporting young adults with life-limiting conditions and their families, whether they work in health, social care, education or other settings. The pathway can also be used to encourage and support commissioners to plan and fund sustainable services for local populations of young people with life-limiting conditions and complex health needs.

The pathway provides a generic framework that can be adapted locally to plan multi-agency services across the statutory, voluntary and independent sectors for young people with life-limiting or life-threatening health conditions as they are growing up and moving into adult service provision.  The pathway can be also used in conjunction with other disease specific or setting guidelines.

One key element of achieving a good transition is for parents/carers to be well prepared for the changes that happen when their child reaches adulthood and informed about how to navigate the many services that need to be joined up.   Alongside the pathway for professionals a new booklet for parents has been developed to help parents think about the different elements of transition for their child and provide tips and links to other resources to help the process feel as smooth as possible.

Transition to adult services: A guide for parents - Together for Short Lives

Individual copies of the publications can be downloaded from the Together for Short Lives website.

* Gibson-Smith D, Jarvis S, Norman P, Fraser L.K. (2021) Making Every Young Person Count: Estimating current and future prevalence of young people with life-limiting and life-threatening conditions in England.  University of York, UK.

** Care Quality Commission (2014). From the Pond into the Sea: Children’s Transition to Adult Services. https://www.cqc.org.uk/sites/default/files/CQC_Transition%20Report_Summary_lores.pdf

*** Marie Curie (June 2012). Don’t Let Me Down: Ensuring a good transition for young people with palliative care needs. https://www.mariecurie.org.uk/globalassets/media/documents/commissioning-our-services/past-initiatives/ypt/dont-let-me-down.pdf

**** The UK Transition Taskforce was chaired by David Strudley, former Chief Executive of Acorns Children’s Hospices, who was instrumental in establishing the Improving Transition for Young People Programme.