HOPSCOTCH Research Project

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15 May 2026

HOPSCOTCH (Helping Optimise Primary Care Support During Transition From Children's Hospice Care) was set up in 2024 (funded till August 2027) as a cross-disciplinary initiative designed to understand and identify opportunities to enhance engagement of General Practitioners (GPs) in the coordination and delivery of care to young people as they transition from children’s hospices.  

More than 86,000 children and young people in England live with a condition that will shorten their life. Many of these children and young people receive care from children’s hospices. Until recently, care from children’s hospices often started in infancy and extended into adulthood. This model of care is no longer possible due to the rapidly growing population of young people with life-threatening and life-limiting conditions and their increased life expectancy. As more children with these conditions become young adults, they now leave the care of children’s hospices and move into adult services.  

Research shows that the role of the General Practitioner is critical to providing quality palliative care. Their involvement reduces emergency hospital admissions and enables person-centred care. Despite this, most GPs are not involved in the care of these young people or in the planning of transition from children’s hospice and feel they lack the knowledge, time and processes for effective communication. 

The project is funded by the National Institute for Health and Care Research (NIHR) and partners and collaborators include Noah’s Ark Children’s Hospice, King’s College London, Northumbria University, Together for Short Lives, St Oswald’s Hospice, NHS West Yorkshire Integrated Care Board. Professor Lucy Ziegler is the primary investigator and Dr Sarah Mitchell and Dr Emma Chapman serve as co-investigators.  

External co-investigators include Professor Lorna Fraser, a Professor of Palliative Care and Child Health at King’s College London and an NIHR Research Professor and a trustee of Noah’s Ark Children’s Hospice, and Dr. Tagore Charles, a consultant paediatrician, and Noah’s Ark Children’s Hospice’s Medical Director. Another of Noah’s Ark Children’s Hospice’s Medical Director’s, Dr Su Laurent is a member of the “HOPSCOTCH Data & Ethics Oversight Group”. 

HOPSCOTCH will work in partnership with young people*, their families and healthcare professionals to co-design, the ‘HOPSCOTCH toolbox’, which will include specific modules for young people/families, primary care teams, and specialist palliative care teams and also provide: 

  • Consultation templates and training links for GP teams 

  • Guidance for families on how to effectively engage with their GP 

  • Enhanced communication protocols to ensure information flows from hospices to primary care 

  • Coordinated Transition Plans.

*The HOPSCOTCH toolbox will feature in a feasibility and acceptability study with 24 young people as they transition from children’s hospice. 

At the time of writing, the interview stage of the research was nearing completion and moving to the next stages of analysis and group work.  

Links 

  • Link to NIHR Research Award - https://fundingawards.nihr.ac.uk/award/NIHR159019 

  • First paper published by HOPSCOTCH - Experience-based co-design informed development of a toolbox to help optimise primary care support during transition from children’s hospice care: HOPSCOTCH study protocol - https://bmjopen.bmj.com/content/15/11/e108660. This abstract has been submitted to the 20th World Congress of the European Association for Palliative Care and the EPAC 2026; 20th World Conference of the European Association for Palliative Care.