Together for Short Lives has published updated categories of children’s palliative care, giving professionals a shared framework to identify which children may benefit from a palliative care approach.
Developed in partnership with the Association of Paediatric Palliative Medicine (APPM), funded by The True Colours Trust and shaped by over 200 professionals and families through our engagement events and working groups
The updated categories set out which babies, children and young people may benefit from a children’s palliative care approach. They describe three groups: those with life-threatening conditions, those with life-shortening conditions and those with severe medical complexity.
When children with serious illness are identified early and referred to the right support, palliative care can make a real difference. But for too many families, the journey to accessing this care is a difficult one. The previous categories were out of date, meaning some children and families were missing out on support that could improve their outcomes. The revised categories give professionals across health, social care and education a common language, making it easier to recognise need, plan care and ensure every family can live as well as possible as they navigate their child’s life, death, bereavement and beyond.
What this means in practice: Aidan’s story
Aidan is eight years old and lives with cerebral palsy, epilepsy and severe gut dysmotility. Born prematurely, the full extent of his condition wasn’t identified until he started experiencing absence seizures at two and a half years old. An MRI confirmed cerebral palsy and brain damage, and from that point his needs quickly became more complex.
Zoe, Aidan’s mum, said: “His epilepsy just absolutely took over. And then he lost his ability to eat, his swallow. He ended up in hospital every month for chest infections and most recently with a twisted bowel. That almost killed him and took six hours of emergency surgery to put him right.”
He requires round-the-clock care including IV nutrition, overnight oxygen and regular chest physio. Getting the right support took time and effort that no family should have to spend, but when he was referred to his local children’s hospice, everything changed for Aidan and his family.
Zoe said: “Being referred to Helen & Douglas House was a game changer for our family. The hospice introduced us to other families like ours and we started going to their parties. For the first time, Aidan was doing the normal things eight year olds do.
“The nurses there are amazing too. They see Aidan as a person, not just for his medical needs and are brilliant at knowing the ins and outs of the various systems we’re currently navigating.”
Aidan’s story illustrates exactly why consistent, shared guidance matters. The updated categories are designed to make referrals like his more straightforward, so that professionals across every setting can identify which children may benefit from palliative care earlier, and no family has to fight to receive the support they need.
Nick Carroll, Chief Executive of Together for Short Lives, said: “No family should have to work as hard as Aidan’s did to get the support their child needs, but without a consistent, shared framework, too many have. These updated categories exist to change that, giving professionals across every setting the same understanding of which children may benefit from palliative care, so that families get the right support without having to fight for it. This is the most significant update since 2018 and I’m proud that Together for Short Lives has led this work alongside the APPM.”
Children’s palliative care is everyone’s business. Everyone, from GPs to school nurses and social workers to paediatricians, has a role to play in identifying children who may benefit from palliative care, and to subsequently help them access that care.
Laura & Christine, APPM co-chairs, said: “These updated categories give professionals across every setting a contemporary shared language to work from. We hope this provides a clear framework for all our colleagues in considering which patients may benefit from palliative care services – including GPs, school nurses, paediatricians, sub-speciality paediatricians, perinatal and neonatal services.”
To support professionals in putting the updated categories into everyday practice, Together for Short Lives has also published the Toolkit for Palliative Care Needs in Children – a practical, evidence-informed resource with clear guidance, definitions and tools to help professionals work together more effectively and coordinate care across services.