Thorpe Hall Hospice are here to support children and families moving into adult care

“The word hospice can be really scary,” shares Kristie, “But hospices offer lots of support and this support is available for young people too.

“There is a ‘living well’ aspect to hospices which people often forget about. The truth is hospices are not just here for the last days of a person’s life - they are about supporting people to live a life too.”

Kristie hopes by sharing her story more families in Peterborough who have a child with a life limiting condition will know support is available to them at Sue Ryder Thorpe Hall Hospice, working in collaboration with the hospital and community teams they might already be familiar with.

“Children don’t stop needing specialist support at 18 when they leave children’s care. In a way that support becomes greater.

“I’d love more families in Peterborough to get in touch with me to find out more about the support we can offer them. By speaking to us now you have the chance to become familiar with what Thorpe Hall Hospice offers, meet the amazing team of staff we have here and find out more about the activities available to you to help your child live their life well.

“We offer virtual day services, wellbeing support for families and siblings and we’re planning social events, family support groups and drop in youth groups too.”

In particular, Kristie hopes to reach out to more families in Peterborough who have children with life limiting, complex needs who might currently be receiving specialist care from hospital or in their own homes.

“We know you don’t need palliative care now, but we want to reach out to make you aware of the care we offer, so we can make your transition to our care as easy and welcoming as possible.”

When a child moves into adult care, they move from having one all-encompassing children’s team to being supported by different specialists. Kristie’s role is to prepare families for this change and make their move into adult care as smooth as possible.

“I make sure families know who is responsible for what elements of their child’s care and put them in touch with different teams that can support them so they better know what the changes will be so they can better navigate that,” she shares. “The last thing we want is for it to be a shock at 18 when everything changes.”

Kristie shares that support is available for young people at age 14 to transition into adult care, and that children can be referred to adult services at 16 onwards working in partnership with children’s care teams. Kristie says there are lots of exciting plans in Peterborough to help support families too.

“As pandemic restrictions ease and it is safe for us to do so, we want to start drop in mornings at Thorpe Hall so families can come meet us and get to know us,” she shares. “We’re looking at working with our colleagues in the local hospital and community care teams and the Caring Together charity partnership to organise drop in coffee mornings for parent carers, where parents and carers can come and meet other mums, dads and carers for support and to chat to us too.”

Families don’t need to be referred to benefit from the available support either.

“Just get in touch with us and have a conversation,” shares Kristie. “You don’t need to be referred to our service to have a chat. If you already have a transition nurse, then we can have a conversation together about what we can all offer – everyone has a different part to play in making sure your child receives the specialist care they need to help them live well as they grow older.”

Families with a child living with a life limiting condition who would like to find out more about the specialist support available in Peterborough can email thorpehall@sueryder.org or call 01733 225900.