Delivering consistent care for children and young people with Down Syndrome: the development of the Budds pathway
- Sandra Redman
- Ella Rachimim
- Anna Petsas
Correspondence: sandraredman16@aol.com
Children and young people with Down syndrome have well-recognised and largely predictable health needs, supported by strong national best-practice guidance, particularly from the Down Syndrome Medical Interest Group (DSMIG). However, the primary challenge lies not in knowing what care is required, but in how to deliver it consistently and effectively across multiple services, professionals, and stages of development. Fragmentation across health, education, and social care can result in missed checks, duplication, inequity, and increased burden for families.
This presentation describes the development of BUDDS (Barnet Unified Document for Down Syndrome)—a co-produced care pathway designed to bring clarity, structure, and shared understanding to the care of children and young people with Down syndrome, and to support the families and professionals around them. BUDDS was created through strong local collaboration in Barnet, supported by an established multidisciplinary and multiagency group that included parents, a culture of co-production, clinical leadership with specialist interest in Down syndrome, and lived experience embedded within early years SEND leadership.
The pathway draws on national best-practice guidance and specialist expertise from referral centres, adapted to local systems and pathways. Developed without dedicated funding or IT infrastructure, the original pathway was published in 2018 as a comprehensive paper document. While clinically thorough, its length and format limited accessibility and routine use. In response, the project evolved into a digital platform, first launched in 2024, and recently relaunched following a successful charity funding bid and sustained parental involvement, including parents with expertise in website design. This redevelopment prioritised usability, accessibility, and digital connectivity.
Since implementation, BUDDS has contributed to improved coordination across services, stronger partnership working between professionals and families, clearer processes, reduced health inequalities, and increased parental confidence and empowerment. This presentation will share key learning from the journey—from paper to digital and from complexity to clarity—and explore how BUDDS can act as a national model adaptable to local contexts. The pathway has also been referenced in government best-practice guidance supporting implementation of the Down Syndrome Act.
