The pilot programme ran for three years and was established to better support families facing fragmented care and inconsistent access across Lancashire and South Cumbria.
Funded by The Kentown Wizard Foundation, the programme overcame these challenges by filling a critical gap in service, by providing a combination of clinical, social, emotional and practical support tailored to the unique needs of seriously ill children, and ensuring earlier access to lifeline palliative care.
Evaluation lead Dr Katherine Knighting, Associate Professor Palliative and Supportive Care at Edge Hill, said: “The Kentown Programme was seen as easing the burden of navigating what families often experience as a fragmented system by providing a trusted, consistent presence at a vital time in their lives.
“It provided wrap-around support including coordination of care, access to services, equipment, grants and memory-making experiences, along with direct practical and emotional support which made a profound difference to families’ lives.”
The overarching purpose of the evaluation was to understand the outcomes of the Kentown Programme and explore how those outcomes were achieved, for whom and under what circumstances.
The pilot programme – a collaboration between Together for Short Lives, Rainbow Trust Children’s Charity and NHS Lancashire and South Cumbria Integrated Care Board, – brought nurses, family support workers and family service co-ordinators together to offer a new, innovative and complementary package of clinical, social, emotional and practical support. The care has been delivered in the home and tailored to the unique needs of each child and family.
The Edge Hill evaluation found:
- Holistic impact: over 250 families were referred to the Kentown programme, with a third benefiting from integrated nursing, family support and coordination.
- Deep emotional connection: families felt genuinely seen and heard through relationship-based care, describing the support as having transformed their ability to navigate complex systems.
- Inclusive and accessible: the programme reached families previously excluded from specialist children’s palliative care, offering a vital alternative route that embraced the whole family.
Professor of Children’s Nursing Bernie Carter, one of the evaluators, said:
“I had the privilege of sitting in and observing Kentown’s team meetings, listening as they shared stories, solved problems, deepened their understanding of how to deliver expert care and support to families.
“Their collegiality and care for each other was indicative of how they worked with families. They learned from each other, were creative and thought out of the box.
“Their work was never easy; it required resilience, passion and determination. Together they made great things happen for children, their families and the stakeholders they worked with.”
Following the success of the first pilot programme, Kentown Support will continue to fund its charity partners in Lancashire and South Cumbria for a further two years, enabling them to work alongside the Kentown Support Nurses based within the five acute NHS Trusts.
Kentown Support recently launched its second programme in Greater Manchester, partnering with new charities to extend the impact of this integrated model of care.
All the partners are also now calling on governments and NHS bodies to use the model to help realise the critical shift of care from hospital to community and deliver neighbourhood health for seriously ill children and families across the UK.
Read the full evaluation report here and find out more about nursing at Edge Hill University.
November 26, 2025
