Bridging the Gap: Transition from Children's to Adult Care

When it comes to Child to Adult Transitioning, the most notable of ellenor’s relationships with local service providers is with the Kent Community Health NHS Foundation Trust (KCHFT).

Identifying the Chasm Between Children and Adult Services

Our collaboration with KCHFT first came about from a relationship between Kate Bradford, ellenor's former Interim Operational Lead - Children’s Services with Sue Marsden, until recently one of KCHFT’s Community Learning Disability Nurses.

Both had recognised the challenges faced by young people nearing adulthood, particularly those with complex health conditions, or life-limiting illnesses. With Sue's experience and knowledge in adult services and Kate as a paediatrics specialist, together they recognised the yawning gulf that has traditionally separated adult and children's services.

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

Sue’s role, working in conjunction with ellenor, is to help bridge that gap between children’s and adult’s services, and ensure 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 patients’ and their families receive a smooth, successful transition to adult care is instilling confidence in the new service providers. This is something that Kate and Sue worked 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.

We provide holistic care from the moment a child is diagnosed, throughout the trajectory of their condition.

Therefore, it’s important that over the course of a child’s transition to adult services, the entirety of their needs are met not only the physical care, but the individual’s mental, emotional, educational, and spiritual requirements too.

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

That could be physical healthcare, intervention in challenging behaviour, or advice around sex and relationships. It could also comprise of help with speech and language, and physiotherapeutic advice, as well as assistance accessing information and education.

There’s plenty of paperwork, too. Sue of KCHFT, 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, KCHFT is in league with several other pillars of the Kent community. These include with Kent County Council, which provides social services, as well as information around benefits, and Kent Medway Partnership Trust for 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.

In this sense, the transition services provided by Sue and her team at KCHFT act as a kind of interface. They provide young adults with learning disabilities with the core support they require, while connecting them to a range of primary and secondary service providers for the rest.

Sue and the other nurses (of which there are around 40) in the Kent 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, in order 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 – protecting and empowering each young individual as they adjust 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 for the families involved.

One of the mainstays of Children’s Services, for instance, is that families typically work with a sole paediatrician, who forms the key point of liaison around their loved one’s condition. By contrast, in the world of adult services patients are treated by multiple clinicians.

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

The presiding emotions of the parents, then, is usually uncertainty, and fear of the unknown. To tackle this, Sue believes it’s about education; about filling in the knowledge gaps, and ensuring families know 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.”

Keeping the support strong throughout the pandemic, and going forward, ellenor and KCHFT are continuing to support one another: sharing knowledge and skills, and remaining in close contact.

For Child to Adult Transitioning services, this meant working with ellenor to identify the most vulnerable patients early on, and ensuring that they had hospital passports in place in case of lone admission. As the pandemic progressed, though, it soon became about trying to normalise attitudes to PPE and social distancing, and help young adults to understand the nature and necessity of COVID-19 restrictions.

Despite being indispensable, the partnership between ellenor and KCHFT is still not a formal one, but a product of pre-existing relationships. Going forward, 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.