Children To Adult Care

Identifying the chasm between children and adult services

Transition is a significant emerging need within children's palliative care. The transition lead, Tina Dodd, has made vital connections with steering groups at other Kent-based children's hospices. Additionally, ellenor's transition team has established strong links with local hospitals, adult disability leads, and specialist nurses, ensuring comprehensive support for young people and their families during this critical period.

All teams recognise the challenges faced by young people nearing adulthood – particularly those with complex health conditions or life-limiting illnesses. Moreover, both adult nurses at ellenor and adult learning disabilities nurses – whose experience and knowledge lie in adult services – recognise the significant gap that has traditionally separated the two.

Sadly, adult health services lack the resources to support children reaching adulthood – which, for the purposes of transition, is 17 – under the same hospice model they’re used to.

Tina’s role, working in conjunction with the adult team at ellenor, other children’s hospices and local hospitals, is to help bridge that gap between children’s and adult services. She ensures that both patients and their families feel informed and comfortable throughout the process.

Meeting the needs of young adults with life-limiting conditions

Part of ensuring that young adults and their families receive a smooth, successful transition to adult care is instilling confidence in the new service providers. This is something that Tina and the adult team at ellenor work together to achieve: conducting joint visits, demonstrating each other's skills and knowledge, and making it clear that it isn’t a handover, but an overlap of service.

ellenor provides holistic care – from the moment a child is diagnosed, throughout the trajectory of their condition. Therefore, it’s important that during a young person’s transition to adult services, at the age of 17, the entirety of their needs is met – not only the physical care, but the individual’s mental, emotional, educational, and spiritual requirements, too.

To achieve this, the ellenor remit is naturally a multi-disciplinary one. Working with individuals with a range of complex health needs, learning disabilities, and life-limiting illnesses, treatment takes a variety of different forms. 

That could include physical healthcare, intervention in challenging behaviour, or guidance on sex and relationships. It could also comprise support with speech and language, physiotherapeutic advice, as well as assistance accessing information and education.

There’s plenty of paperwork, too. Tina is responsible for transitioning the treatment escalation plans of young patients, while a lot of her work – such as liaising with GPs, signposting, and fact-finding for families – goes on in the background.

Local alliances making it all possible

To be able to address each aspect of a patient’s wellbeing, ellenor collaborates with several other pillars of the Kent community. These include with Kent County Council – which provides social services and information around benefits – and Kent Medway Partnership Trust, which offers mental health services.

This collaboration takes the form of the Learning Disability Alliance – a formal, multi-disciplinary, and cross-organisational league of local health and social care services. Together, its services span occupational therapy, physiotherapy, clinical care, and vision and hearing support.

Tina at ellenor, the adult team at ellenor and the nurses in the adult Learning Disability Nursing Service, despite all working to the same principles, tailor their approach to the needs of each individual and locality. They also work closely to liaise with the GPs of transitioning patients, to ensure that reasonable adjustments are being made for each individual.

This includes taking steps at each stage of the transition process to comply with the Mental Health Capacity Act which aims to protect and empower each young individual as they adapt to the new culture and character of adult services.

Working with the whole family to provide reassurance.

Losing some of the consistency of a hospice environment can be tough not only for the patient themselves, but also for the families involved.

In children’s services, families typically work with a sole paediatrician, who forms the key point of liaison around their loved one’s condition whereas in adult services patients are treated by multiple clinicians.  The children also have numerous clinicians but are overlooked by a paediatrician.

Likewise, the familiarity of being ‘fast-tracked’ into paediatric wards – a cornerstone of children’s services – also goes, and families must adjust to changes in the established routes of supply.

The presiding emotions of the parents, then, is usually uncertainty, and fear of the unknown. To address this, Tina believes it’s about education - filling in the knowledge gaps and ensuring families understand what to expect from a new world of service providers and customs. It also involves having a mainstay – a reliable, regular point of contact to provide consistency and support throughout the journey.

“The parents we’ve worked with have all said how reassuring it has been to have a person to go to, and I think that’s been a key part of [the transitioning process],” Sue says. “A named nurse, somebody you can go to and say ‘so, in adults, if we need this, who can we go to?’

“If I don’t know the answer immediately, I can find out.”

Despite being indispensable, the partnership between ellenor and local adult teams is still not a formal one, but a product of pre-existing relationships. Looking ahead, the success of Child to Adult Transitioning services means that more is likely to be done to solidify and consolidate this crucial collaboration.

And that’s good news – particularly for all the young patients that rely on holistic care, and for the grateful families behind them.