What evidence-based standardised health, education and social care offer and model of care should be provided for children with neurodisability and their families, and what would be needed to ensure a localised version can be provided efficiently at scale and individualised to reduce inequity?

Background Children with neurodisability and their families require timely support from the NHS, education, and social care. Improving the efficiency, equity, and quality of services received through local offers of integrated care is an expressed policy priority. Our PGfAR will address the research question: What evidence-based standardised health, education and social care offer and model of care should be provided for children with neurodisability and their families, and what would be needed to ensure a localised version can be provided efficiently at scale and individualised to reduce inequity? This question arose from parent and professional priorities including from British Academy of Childhood Disability (BACD), RCPCH Specialist Group. Aims 1. Undertake creative and inclusive PPI that identifies underserved groups not well represented in our existing PPI strategies, and to work with people whose voices are not traditionally heard. 2. Establish and cultivate a community of childhood disability Early Career Researchers from health, education, and social care. 3. Understand what health, education and social care is offered to children and parent carers, what they receive, and what they want. 4. Work with parent carers and professionals to identify which outcome domains are important to measure in the PGfAR. 5. Co-create the detailed methodology and research design of the workstreams for the substantive PGfAR. Development work WP1 Implement our multi-pronged PPI strategy with young disabled people and parent carers utilising socially and ethnically diverse groups around the country, and how we can engage with potentially under-represented groups. WP2 Build on our existing BACD-Castang Strategic Research Programme for national multi-sector and disciplinary teams/collaborations. Identify and cultivate a community of childhood disability Early Career Researchers from medical, allied health, public health, social care, and education backgrounds. WP3 Undertake a scoping review of content of multiagency Local Offers of care to disabled children. Conduct a survey with professionals and parent carers regarding components and models of care; including what is delivered and what parent carers would like to receive, including innovative practice. Interview a subset of participants, purposively sampling parent carers from underserved and less heard communities. WP4 Convene iterative online/in-person consultation workshops with parent carers and professionals to discuss what to measure as indictors of quality of care. Identify what NHS, education and social care routine data sources might provide useful data for the PGfAR. WP5 Design the subsequent PGfAR to focus on evaluating innovative components and models of health, education and social care that parent carers report as valuable are associated with good health and wellbeing and quality of care outcomes. Identify diverse candidate UK areas to join the PGfAR, including areas with underserved NHS CorePLUS20 populations. Timelines Duration 15 months: 1.5.25 - 31.7.26. Existing BACD-Castang funds will support co-design development work from 1.12.24. Anticipated impact and dissemination Timely submission of high-quality PGfAR 2026/27. Each PDG WP will deliver standalone outputs, and utility for the PGfAR. Dissemination of research findings through parent carer and professional groups using online content, newsletters, scientific publications.