Preparing Young People for Transition into Adult Care

Interview with Sue Marsden - Former Community Learning Disability Nurse at Kent Community Health NHS Foundation.

“As you know I was very worried about Mollie’s transition time because of what people have told me, I can honestly say that between yourself (the Learning Disability Team) and Kate (ellenor Hospice) it’s been good.  I have felt very supported throughout the whole process. Thank you”

Leigh, Mollie's Mum

As a Community Learning Disability Nurse at Kent Community Health NHS Foundation Trust (KCHFT), Sue Marsden’s favourite part of the role is also an excellent description of what she does:

“I love it all. I love the challenges, the diversity. We work with people from the mildest of learning disabilities, who just need a little bit of help getting them into the acute health systems all the way through to profoundly, multiple disabled people, at every stage of life.”

Sue works mainly with adults, specifically individuals with a range of health conditions and learning disability-associated requirements. “It could be complex, life-limiting health needs. It could be challenging behaviour, advice around sex and relationships, or access to health treatment or information.”

Many of the adults Sue works with have been receiving care since they were children – some of them under ellenor's care.

Ensuring a Smooth Transition 

Part of Sue’s role is to ensure that individuals with learning disabilities who are nearing the age of 18 receive a smooth transition to adult services.

Helping these young adults navigate the gulf between children and adult services isn’t always easy. But, thankfully, it’s a process that the KCHFT’s close partnership with our hospice, one born from personal ties, has gone a long way to refining. As Sue explains:

“Our relationship with ellenor came about from an association with one of their nurses, Kate Bradford. Both of us had recognised the challenges of transition for young adults, particularly those with really complex health conditions.

Kate’s world is paediatrics, mine is adults, and traditionally there’s been this kind of chasm in-between the two.”

Working to Bridge the Gap

It’s that gap that Sue is working to bridge; helping ease young adults with learning disabilities, and their families, into a new care environment. For those families, Sue relates, many of whom who have become accustomed to the stability and support of a hospice environment, such as ellenor. The overwhelming emotions of transition are “fear and uncertainty.”

“We have to reassure the families that – even though they’re leaving the nice, cosy world of hospice care – they’re not going to be left with nothing. There’s actually a really good set of adult services out there, you just need a link into them.

What Kate and I have done is a lot of joint visits together. We make it clear that we’re working together, that it’s not a case of a ‘handover’, but a clear overlap of service whilst we get to know each other. It’s a demonstration of each other’s knowledge.

As soon as families see that, they feel much more reassured.”

Working in Partnership

In addition to its partnership with the hospice, Sue’s team (which is primarily a health service) has strong ties with Kent County Council – which provides social services, as well as information around benefits – and Kent Medway Partnership Trust, for mental health services.

These services, as Sue explains, form the Learning Disability Alliance. This is a formal, multidisciplinary, cross-organisational alliance that is composed of psychologists, care managers, occupational therapists, vision and hearing support, and community learning disability nurses. Together, they meet the wide range of needs of young adults as they transition.

“The role may be hands on; it may be direct physiotherapy advice or help with speech and language. It might also be direct intervention in one behaviour. But it’s also a lot of liaison with GPs, to ensure that reasonable adjustments are being made, and that we’re meeting the rules of the Mental Capacity Act.

Sue is one of around 40 nurses in the Kent Learning Disability Nursing Service. All nurses work to the same overarching principles, just in slightly different ways – ensuring the service is always tailored to the needs of each individual and locality.

“We’re making every adjustment we can for that person. This involves treating them as far as we possibly can, but then also realising that if we can’t, we put in best supportive care to enable that person to manage a condition, or to die peacefully.”

Meeting the Challenge of COVID-19

KCHFT’s relationship with our hospice has remained strong, Sue asserts, even throughout the Coronavirus pandemic. “We’ve continued to be available to each other, sharing our knowledge and our skills.” Yet COVID-19 has brought with it certain other hurdles to surmount.

“With learning disabilities, a lot of the people we’re looking after aren’t sick. They’re just ordinary people, who happen to have a learning disability. We’re not a traditionally clinical nursing service, so the move to lots of PPE, and ever-increasing barriers between ourselves and the people we support, has been quite an interesting emotional challenge.”