Independent Evaluation Finds Kentown Programme is a ‘Catalyst for Cultural Change in Children’s Palliative Care.’

An independent evaluation has revealed the positive impact of the Kentown Children’s Palliative Care Programme, a three-year pilot commencing in 2022 and ending in August 2025, improving support for children with life-limiting conditions and their families across Lancashire and South Cumbria.

Funded by The Kentown Wizard Foundation and delivered in partnership with several charity partners, the three-year pilot programme was designed to fill long-standing gaps in statutory provision. It combined the expertise of Kentown Support Nurses, Family Support Workers, and Service Coordinators to embed a coordinated, family-centred model of care for children with life-limiting and life-threatening illnesses.

In 2025, Dr Helena Dunbar who founded and led the pioneering children’s palliative care pilot programme, established Kentown Support, an independent not-for-profit organisation backed by The Kentown Wizard Foundation.

The pilot programme evaluation, conducted by Edge Hill University, found that the Kentown programme filled a critical gap in statutory provision, offering earlier access to palliative care, and holistic support that families had previously struggled to access. More than 250 families were referred during the programme, with over a third accessing all three elements of the model.

Despite national guidance advocating for high-quality, 24/7 multidisciplinary support, families across the UK continue to face fragmented care and unclear pathways to support. The Kentown model demonstrates that holistic paediatric palliative care is both possible and valuable.

The evaluation found that the programme enabled access to specialist community palliative care support earlier than would normally have been expected, which is critical because many families were previously referred late or not identified at all. The programme’s timeliness and responsiveness have empowered families to make informed decisions and choices about their child’s care.

For health professionals, the programme facilitated earlier conversations around Advance Care Planning which had often been delayed until a child was at end of life. This cultural shift towards proactive dialogue is seen as a major improvement enabling Kentown to create a space for families to have these discussions sooner and on their own terms.

Ian Jones, CEO of The Kentown Wizard Foundation said ‘The Kentown Support team has established a new, collaborative way of working that has genuinely made a massive difference to so many children and families going through the most difficult times. The remarkable feedback from families (which underpins the positive conclusions evident in the Edge Hill evaluation report), is truly special and a major credit to all involved. The most exciting aspect of this ground breaking programme is that it is now being rolled out across the UK and will continue to deliver significantly improved community palliative care for children and their families. The Kentown Wizard Foundation is extremely proud to be involved with this incredible programme.’

Kentown Support will continue to fund its charity partners in Lancashire and South Cumbria, enabling them to work alongside the Kentown Support Nurses based within the five acute NHS Trusts. Furthermore, it plans to replicate and expand this model across the UK, having launched a second programme in Greater Manchester, and funded a Centre of Excellence at King’s College London to strengthen research, training and professional development.

Dr Dunbar, CEO of Kentown Support commented, ‘By reframing palliative care as an everyday, integrated consideration rather than a conversation of last resort, Kentown Support is encouraging open dialogue around prognosis, care preferences, and Advance Care Planning, and we are delighted to have launched our second programme of delivery in Greater Manchester. For our programme to be described as a “catalyst for cultural change in children’s palliative care” is truly remarkable. We look forward to working with health systems and policymakers to build on this progress, driving the service forward and welcoming new charity partners to help us deliver and expand our programmes.’

ENDS

The Report can be downloaded here