Transitions to adulthood - 'a journey not a destination'

“It felt like falling off a cliff” … a regular refrain heard from young people and their families about their experience of moving from a children’s hospice service into the unfamiliar, and often fractured arena of adult health and social care.  

Sadly, this is a refrain that many professionals working in this area have heard multiple times and over very many years; long before we could point fingers at shrinking statutory services and impossibly high thresholds for support. 

The issues facing young people and their families have not changed significantly over the thirty years I have been active in this area of work – they are still centred very much around organisational boundaries and self-imposed thresholds between health and social care and between children’s services and adult services.  

Services have largely imposed a fixed handover point that is based on a single point in time (usually an 18th birthday) rather than considering transition as a longer term process which needs to start well in advance of any service change and involve the people it is impacting.

For most families a child turning eighteen is a momentous occasion and a cause for celebration but for the families supported by children’s hospice care this special time can also be a time of anxiety and fear.  

In the space of a day their child is no longer a child and the need to now engage with new services, and often a very different support landscape, can feel challenging and disheartening. Hence the sentiment of ‘falling off a cliff’.

Here at Tŷ Hafan, like in many children’s hospices, supporting young people to transition from our service into adult health and social care has become an integral part of our service offer.  

With advances in medical care and generally better health outcomes for young people with complex disabilities and health needs there are an ever increasing number of children supported by the children’s hospice sector reaching an adulthood they and their families didn’t always expect to reach, or indeed plan for.

A research study published by Dr Lorna Fraser and colleagues in 2023, identified that the number of young people with a life-shortening condition had almost doubled in the 10 years between 2009 and 2019 and the largest proportional increase in prevalence was identified in the older age groups, 12-17 and 18-25 (indicative of increasing survival rates) [1].  

The same study also looked at the complexity of care over time and identified that medical complexity increases with age, so not only are there significantly higher numbers of young adults with life-shortening conditions but the care they need to live well is also increasing.  

This care is wider than purely clinical support, as children become adults there is a desire for more independence and new social opportunities alongside the need to manage perhaps new symptoms and deteriorating conditions and ultimately impending death.  

The support offer needs to be multi-disciplinary, holistic and, perhaps more so than ever, personalised.

The needs of those supporting young people

Providing a good transition experience and a successful transfer of care into adult services isn’t just about the young people.  

Whilst they, of course, need to be front and centre of all decisions it is important that parent carers are supported too; considering independence for a young person who has complex needs can feel daunting and the new landscape of mental capacity and best interests can feel alien and isolating.  

Supporting young people to move from one service to another can also feel unsettling for the professionals involved and it is important to acknowledge their anxieties in order to provide a consistent and confident approach to young people and their families.  

Staff in children’s hospices report feeling like they are ‘letting young people and families down’ during the process of transition, as they will often focus on what they see as the differences in adult service provision.  

Colleagues in adult services can feel unprepared to support this cohort of young people, particularly with the wider psychosocial elements of care. It is important that we recognise the significant differences between the support services available in children’s and adult health and social care, including marked differences in how hospice care and support is accessed, so that the right advice and care can be given.  

But it is equally important that we recognise the significant synergies between service settings too. Nowhere is this more apparent than the underlying values of compassion, respect and person-centred care that underpin all hospice provision. This commonality of ethos and approach is the firmest of building blocks on which to develop joint initiatives to meet the needs of young people with a range of complex conditions.

The bespoke transition service we have embedded at Tŷ Hafan aims to work across all these variables and includes a wide range of support for young people, families and staff from both our own setting and those working in adult hospices and other adult service disciplines.  

The service has largely been delivered as a series of projects and this has provided a helpful framework for continuous evaluation and refinement.  

It is fair to say it is a continual work in progress, as are many service offers across the hospice sector. Hospice care is built around the principles of keeping people at the centre of service development, constantly coming up with creative solutions to meet a range of individual needs and continuous adaptation; our transition service is a great example of this.

The overarching objectives for our transition support are to:

• Enhance service provision for young adults with palliative care needs​
• Ensure adult services know of young people who may need their care​
• Increase confidence of young people/ families to access adult hospice care​
• Support parents to feel confident about new boundaries of decision making
• Enable a single point of contact to access support​
• Increase staff confidence and share skills between disciplines ​

Working closely with adult hospices across our catchment area has provided opportunities for some really innovative practice and more importantly has had a positive impact on the young people and their families who have successfully navigated this transition into the adult service.

A great example of this innovation is the ‘Transition Clinics’ that we have embedded into some of the adult hospices in our area. These clinics are joint ventures between Tŷ Hafan and identified adult hospices, where young people aged 16+ and their families are invited to the adult hospice for a clinic appointment with both the adult and children’s medical teams.  

To make the offer more attractive Tŷ Hafan provide a range of other services to meet the needs of the young people and families; this could be complementary therapies, music therapy and family support or a combination of all; and of course refreshments and cake!

This provides the opportunity for young people to have social time with their peers, and or families to get support from each other and for the young people to get familiar with a new environment. The clinics also give the adult hospice team a supported opportunity to get to know the young person and their specific needs and a really robust handover of their care.  

About the author

Tracy Jones took up the newly created post of Director of Family Wellbeing and Outreach services at Tŷ Hafan Children’s Hospice in 2022, having worked across the hospice family support and bereavement services team for almost 15 years. With a background in Social Work, primarily focused on supporting disabled children and children with complex medical needs, Tracy bought with her a passion for person centred and strengths based support services.

Tŷ Hafan is based in South Wales and covers a large and socially diverse area of south, east and west Wales. Tracy’s passion for developing community based services has led to a significant expansion of the non-clinical services offered by Tŷ Hafan and the portfolio now includes an extensive family support and bereavement service offer alongside a full range of therapies delivered across the catchment area. Tracy also developed and oversees Tŷ Hafan’s expanding transition service which supports the growing population of young adults known to the hospice as they, and their families, navigate the unfamiliar landscape of adult health, social care and hospice services. 

References

1. Fraser L, Bedendo A, Jarvis S. Children with a life-limiting or life-threatening condition in Wales: trends in prevalence and complexity: final report. York: University of York; 2023.