Beyond the handover: why transition planning for young people on Home Parenteral Nutrition must start earlier
By Abigail Morris, Clinical Operations Manager for Paediatric Services at Lloyds Clinical
Transition is more than a transfer of care
For a young person receiving home parenteral nutrition (HPN), moving from paediatric to adult services involves far more than transferring their care to a new clinical team.
It can change how appointments are managed, how decisions are made and how much responsibility the young person is expected to take for their treatment. At the same time, they may be leaving school, considering university or employment, building relationships and beginning to think more seriously about independence.
Yet conversations about transition often begin when a young person is around 16 and the transfer to adult services is already approaching. In my experience, that can leave young people, families and clinical teams trying to address years of questions and uncertainty within a relatively short period.
Transition needs time.
Why families need more time to prepare
As Clinical Operations Manager for Paediatric Services at Lloyds Clinical, I lead our paediatric services nationally. This includes the ongoing nursing, training and respite support we provide for children and young people receiving HPN, working closely with our Paediatric Nursing Service Managers and the NHS Trusts we support.
Over the past five years, I have heard similar concerns from families across the country. Parents have often told me that they do not know what adult services will look like, what support will remain available or how expectations of their child may change. Young people may have ambitions for their future, but little opportunity to explore how their treatment could fit around those plans.
By the time formal transition planning begins, conversations can feel rushed. Clinical skills may need to be taught, new responsibilities introduced and support arrangements agreed, while the family is also trying to process a significant emotional change.
What one family’s experience taught us about transition
One family played a particularly important role in shaping my thinking.
The young person wanted to attend university and live as independently as possible. Achieving that would require them to gradually develop some of the skills needed to manage their own care. Their parents were understandably concerned. They had spent years protecting their child and managing complex treatment, and they were not confident that the young person could take on those responsibilities safely.
Building confidence through education and support
As we worked with the family, it became clear that the young person already understood far more than anyone had realised. They had spent years watching their parents and healthcare professionals manage their treatment. With education, support and careful assessment, they began to develop the knowledge, practical skills and confidence needed to move towards the future they wanted.
Why parents need support too
The experience also showed how difficult it can be for parents to begin stepping back. Their concerns were rooted in love, responsibility and years of vigilance. They needed time and reassurance just as much as the young person needed training.
Had those conversations started at 14 rather than much closer to the point of transition, the family would have had more time to explore their concerns, build confidence gradually and plan together.
That experience became one of the key drivers behind the creation of our HPN transition book for teenagers, ‘Learning to manage your HPN‘.
Looking beyond clinical care
Clinical pathways and transition resources already exist, but much of the available information focuses on the practical transfer between paediatric and adult services. Families also need support with the wider realities of growing up with a complex health condition.
Questions about education, employment, financial support, respite provision, relationships, socialising and emotional wellbeing can be just as important as questions about appointments and clinical care. Parents may be wondering how their role will change. Young people may be unsure how to speak for themselves in consultations, explain their condition to others or make decisions about their future.
We wanted to create a guide that could accompany families through that process rather than provide information at a single point in time.
The book encourages young people to think about their goals, concerns and aspirations. It covers topics including building independence, understanding treatment, developing clinical skills where appropriate, preparing for adult healthcare services, finding support networks and becoming more confident in conversations about care.
Supporting individual journeys to independence
It also includes space for reflection, journalling and personal goal setting. That matters because transition will look different for every young person. Greater independence may mean learning to manage aspects of treatment, attending part of an appointment alone or becoming more involved in decisions. For another young person, it may mean learning how to explain their needs or identify the people who can support them.
What successful transition planning looks like
There is no single measure of a successful transition. The aim is to help each young person achieve the level of independence that is appropriate and meaningful for them, while making sure the right support remains in place.
Early feedback from young people, families, nursing teams and healthcare professionals has been positive. Parents have valued seeing their own concerns acknowledged, while clinical teams have welcomed a structured resource that supports wider conversations alongside existing NHS pathways.
Young people have responded particularly well to a guide that considers their ambitions and future opportunities as well as their healthcare needs. Their condition is part of their life, but it should not automatically determine what they can hope for or achieve.
Why healthcare organisations should start earlier
There is a wider lesson here for healthcare organisations.
Transition should be approached as a gradual journey that starts well before the transfer to adult services. It requires continuity, collaborative planning and a clear understanding of the individual young person and their family. Clinical preparation remains essential, but emotional, social and practical needs must also be addressed.
The case for dedicated transition specialists
I believe there is a growing case for dedicated transition specialists who can begin working with young people and families from around the age of 14. They could provide continuity, coordinate conversations across services, help families plan ahead and make sure support does not become compressed into the final months of paediatric care.
Starting earlier gives young people time to build skills without sudden pressure. It gives parents space to adjust and gain confidence in their child’s abilities. It also enables paediatric and adult teams to work together around the person’s wider life, rather than focusing solely on the point of transfer.
Giving young people the best start to adulthood
For young people receiving HPN and other forms of complex long-term treatment, that preparation can shape how confidently they enter adulthood. The sooner we begin those conversations, the more time we have to help them imagine, plan for and move towards the future they want.
