For Keely’s family, the move from children’s to adult services feels daunting. But a partnership between Claire House and Wirral Hospice St John’s is changing how young adults make that transition.

For families supported by Claire House, moving from a children’s hospice to adult care at the age of 25 can be daunting. It often means new doctors in unfamiliar settings who don’t fully know the young person's history and needs.

“Thanks to medical advances, we are now seeing that some of the children Claire House cares for are living longer. To ensure they continue receiving the care and support they need when they are discharged from Claire House at 25, we now collaborate with adult services," explains Louise Smith, Young Adult Palliative Care Nurse Specialist at Claire House.

Lou works as part of a dedicated team to ensure young adults needing ongoing palliative care are referred to their local adult hospice. Claire House and Wirral Hospice St John’s have partnered to provide guidance, support, and advocacy.

“The thought of not having Claire House was scary,” says Sharon, Keely’s mum. “We felt lost until Lou from Claire House explained the transition service and introduced us to Dr Claire.”

Dr Claire McNamee, a Palliative Medicine Doctor at Wirral Hospice St John’s, explains: “In children’s services, care is usually overseen by one consultant. In adult care, families meet a whole new team, which can be overwhelming.”

Claire House prepares young adults and their families for the transition between children’s and adult services over a period of three to five years.

“We help families get to know their adult team while having the security of their children’s team too. It means when they are discharged from Claire House, they have a relationship with their local adult hospice, which can support and advise them,” says Lou.

Keely, now 23, has been supported by Claire House for more than 15 years. Diagnosed with Rett syndrome at age six, she is nonverbal and requires 24-hour care.

“Despite her complex needs, Keely is happy and lives life to the full. She enjoys respite stays at Claire House. When she’s not there, the team is always a phone call away. So, we have worried about losing them,” says Sharon.

For the past four years, Keely’s family has also built a relationship with Wirral Hospice St John’s.

To support families during the transition, the two hospices offer joint clinics. “These clinics offer the knowledge, skills and experience from adult palliative care, with the skills that we bring from a children’s palliative care point of view. We often bring knowledge around childhood conditions, which we are now seeing more commonly in adult services thanks to medical intervention,” explains Lou.

For Sharon, the joint clinics, held at Wirral Hospice St John’s, came at a time when Keely’s health declined.

“Without both hospices, I wouldn’t have known what to do. We went through Keely’s symptoms and collaboratively put together a plan to manage her condition,” says Sharon.

“Initially, I didn't understand what an adult hospice did. I knew they provided end of life care, but they offer so much more, like the clinics, therapies and parent support groups.”

Dr Claire says the clinics help break down misconceptions. “We open the doors to families who may have previously had a different understanding of what adult hospices offer and make the setting comfortable. For example, Keely likes to move around, so we use a spacious room for longer appointments.”

Sharon adds: “We know we are in safe hands. I feel Dr Claire knows us as good as anyone ever has. For now, Keely enjoys her stays at Claire House, but I’m not worried anymore. I know when Keely is discharged, we have adult services to take care of us.”