The pioneering ‘Kentown Children’s Palliative Care Programme’ has filled a critical gap in care and support for seriously ill children and their families, an independent evaluation has found.
The pilot, a collaboration between Together for Short Lives, Rainbow Trust Children’s Charity and NHS Lancashire and South Cumbria Integrated Care Board, has 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 in the community and adapted to meet the needs of each child and family.
This model, the first of its kind across the UK, was funded by The Kentown Wizard Foundation. The three-year pilot ran from 2022 until earlier this year in response to families experiencing fragmented care, inconsistent access, and a lack of clear pathways to support.
These challenges were particularly prominent in the North West of England, which has one of the highest populations of children with life-limiting conditions in England. Access to support is something of a postcode lottery, varying according to families’ ethnic and socio-economic background.
The evaluation, conducted by Edge Hill University and led by Dr. Kate Knighting, found:
- Holistic impact: over 250 families were referred to the 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 who had not previously accessed specialist children’s palliative care, offering a vital alternative route that embraced the whole family.
The programme bridged critical gaps in care by fostering collaboration across services, enabling earlier, family-led advance care planning, and introducing a coordinated, family-focused approach that complements existing NHS, children’s hospice, and voluntary sector support.
The programme has been transformative for families like Layla’s, helping them to access crucial support which has had a real impact on their lives. Layla was born six weeks early and had a cardiac arrest. She needed resuscitation for 17 minutes. During those 17 minutes, Layla suffered a lack of oxygen that caused damage to her brain and she was left with a brain injury called hypoxic ischemic encephalopathy. She spent 89 days in the Neonatal Intensive Care Unit.
“Going through what we went through is hard, we really struggled. We were emotionally drained, mentally exhausted. Before we were referred into the programme, the support we received was mainly medical. To have Family Support Worker Brodie, from Rainbow Trust, who is not there in a medical capacity, who is there to support us in any way we need is amazing. I would never have had that support without Brodie and the financial help from Together for Short Lives’ Family Support Hub has been incredible. Without this support I would never have got through it.”
Clara, Layla's mum
Following the success of the first programme, Kentown Support is funding Together for Short Lives and Rainbow Trust Children’s Charity to continue delivering a package of integrated community children’s palliative care across Lancashire and South Cumbria for a further two years.
Kentown Support has recently launched its second programme in Greater Manchester, partnering with new charities alongside Together for Short Lives and Rainbow Trust Children’s Charity to extend the impact of this integrated model of care.
All the partners and Kentown Support are now calling on governments and NHS bodies to recognise the potential of 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.
Nick Carroll, Chief Executive of Together for Short Lives, said:
“Consistent, high quality children’s palliative care can help families make the most of every precious moment together. But if families can’t access vital services, everything can seem like a battle. Every day they face uncertainty, overwhelming responsibility and disruption to family life. Together, we have united NHS and voluntary sector services in Lancashire and South Cumbria to deliver a ground-breaking project that has successfully filled a critical gap, offering earlier and more holistic care. We are now urging the UK’s governments recognise and share the pilot as a model of best practice with other local and regional NHS organisations.”
Zillah Bingley, Chief Executive of Rainbow Trust Children’s Charity, said:
“It is fantastic to hear the difference the programme is making to terminally ill children and their families and how it has acted as a ‘catalyst for cultural change for children’s palliative care’. We must now act on the feedback in the Evaluation in Report and embrace the ‘lessons learned’ to use this pilot as a springboard for improvements for this continuing programme and future ones. It is vital that we deliver the best possible care for families facing the unimaginable, which of course is the whole raison d’être of the programme. We look forward to collaborating further with our partners to help more families and to lobby the NHS to further implement this model of support across the country.”
Ian Jones, Chief Executive of The Kentown Wizard Foundation said:
“The Kentown Support team have established a new collaborative way of working that has made a genuinely massive difference to so many children and families going through the most difficult of times. The remarkable feedback from the families (which underpins the positive conclusions evident in the Edge Hill evaluation report) is genuinely something truly special and a great credit to everyone involved. The most exciting aspect of this groundbreaking programme is that it is now being rolled out across other areas of the UK and will continue to deliver significantly improved palliative care for children and their families. The Kentown Wizard Foundation are extremely proud to be involved with this incredible programme”.
Dr Helena Dunbar, Chief Executive of Kentown Support said: “This programme has demonstrated that by truly working together across services and organisations, creating and equipping teams, good children’s palliative care in the community is possible. The programme set out to be about service delivery but what we have achieved is service leadership. Kentown Support has a massive vision to continue to replicate programmes across the UK and is excited to start working with other partners.”
