Kentown Support Funds Pioneering Work to Transform Children’s Palliative Care Evidence Base

King’s College London researchers launch pioneering projects to improve care for children with life-limiting conditions

Dr Bethan Page, Lecturer in Child Health and Palliative Care, and Dr Dee Fields, Research Assistant, have begun work on two exciting projects at the Centre of Excellence in Children’s Palliative Care at King’s College London, which is funded by Kentown Support, led by Professor Lorna Fraser.

These projects aim to build a robust evidence base to improve the support and care available to children with life-limiting conditions and their families across the UK.

Project 1: Improving Social Care Support

The first project will explore how social care services can better meet the needs of families.

Parent interviews will capture experiences of accessing and receiving support from social care services and Local Authorities.

Professional focus groups will gather recommendations for improvement. Collaborative workshops will bring together parents and professionals to prioritise the most urgent changes and highlight future research areas.

Project 2: Education and Training for Parent Carers

The second project will explore education and training needs for parent carers of children with medical complexity. These parents often need to learn a wide range of specialist care skills, such as managing feeding tubes or tracheostomies. While training programmes such as the Council for Disabled Children’s Expert Parent Programme and Well Child parent training exist, many parents report feeling underprepared and unsupported.

Building on Bethan’s previous PhD research, this project will:

• Work with the parent advisory group to co-design a survey for parent carers
• Identify gaps in existing support and training provision
• Inform the development of improved, more consistent training resources to better meet families’ needs

Dr Bethan Page commented: “There has been hardly any research in social care for children with life-limiting conditions and services are often not fit to meet the needs of children and families. Children with disabilities are entitled to social care support under UK law, but services are often inconsistent and not well adapted to children with life-limiting conditions. We are looking forward to working with parents and professionals to explore how we can improve support for children and families.”

Both projects represent significant steps toward improving the quality of care and support for families navigating the challenges of life-limiting childhood conditions.

                                                                 ENDS

Media Contact

Debbie Jacobs

Marketing and Communications Manager, Kentown Support

debbie.jacobs@kentownsupport.org.uk

0730 994 1438

www.kentownsupport.org.uk

About Kentown Support

Kentown Support was established in 2025 with the generous support of the Kentown Wizard Foundation. Our mission is to improve the provision of community palliative care for children and families across the UK. We believe that every child with a life-limiting condition – and their family – should have access to a model of integrated community children’s palliative care, whenever and wherever they need it.

Kentown Support works to:

. develop sustainable, high-quality community-based children’s palliative care teams

. support and collaborate with healthcare professionals, local services, and community partners to create a more coordinated, accessible services

. share and fund research and training resources to improve understanding, build knowledge and drive advancements in children’s palliative care

About King’s College London   

King’s College London is amongst the top 40 universities in the world and top 10 in Europe (THE World University Rankings 2024), and one of England’s oldest and most prestigious universities.  With an outstanding reputation for world-class teaching and cutting-edge research, King’s maintained its sixth position for ‘research power’ in the UK (2021 Research Excellence Framework).     

King's has more than 33,000 students (including more than 12,800 postgraduates) from some 150 countries worldwide, and 8,500 staff.   

For nearly 200 years, King’s students and staff have used their knowledge and insight to make a positive impact on people, society and the planet. Focused on delivering positive change at home in London, across the UK and around the world, King’s is building on its history of addressing the world’s most urgent challenges head on to accelerate progress, make discoveries and pioneer innovation. Visit the website to find out more about Vision 2029, which sets out bold ambitions for the future of King’s as we look towards our 200th anniversary.  

World-changing ideas. Life-changing impact: kcl.ac.uk/news