Recovery, Renewal and Reset of Services to Disabled Children

Research question Which reconfigurations of services for disabled children arising from COVID-19 work well and should inform policy on system recovery and planning for future emergencies? Background 8% of UK children are disabled. During COVID-19 services were stopped and then reconfigured. Parents reported struggling to cope, deteriorations in their children s health and their own wellbeing. Delays to diagnosis, assessment and treatment and increases in safe-guarding concerns have been reported. Objectives: 1. Identify commonly adopted service changes and their impacts. 2. Quantify change in disabled children s contacts with services between: pre-lockdown(March 2019-February 2020); full lockdown (March-May 2020); and post lockdown (May 2020-February 2021) including further periods of change (e.g. in response to increased COVID-19 cases) 3. Identify factors (child, family, intervention type, provider, organisation) enabling sustained high-quality services during COVID-19. 4. Ratify agreement across parents and professionals on resetting care. 5. Identify benefits and risks of individual changes within and across services Design: Mixed methods. Rapid Review. Observational study of retrospective routine data. Individual interviews. Focus groups. Triangulation of findings. Delphi survey. Setting: NHS hospital and community services, local authorities, education settings. UK parent and professional groups. Target population: Children with neurodisability aged 0-19 years. Inclusion criteria: Children with neurodisability who require multiple services. Methods: Objective 1. Rapid review of research evidence and surveys of practice and families and professionals experience Objective 2. Structural equation modelling of routinely collected anonymised NHS, social care and education data to investigate patterns of change in care pre and during COVID-19 and consequences for children s mortality and morbidity measured by unplanned assessment and admission. Sample: 3400 children living in five areas of England Objectives 3 and 5. Individual interviews and focus groups with up to 100 families and 75 professionals in the same five areas Workshop to synthesise evidence from across the study to generate a model of facilitators and barriers to service provision and list of practices that should start, stop or continue Three focus groups (ten participants each): One for parents of parent carers of children with neurodisability One for Designated Medical Officers One for Designated Clinical Officers One for local authority leads for Special Educational Needs and Disability Objective 4. Delphi Survey: Parent and professional networks used before by the applicants. 300 UK parents of children with neurodisability; 300 professionals Deliverables and impact: An agreed set practice recommendations and strategies to ensure renewed health and social care services for disabled children are equitable and effective in reducing children s mortality and increasing health and wellbeing of the children and their families. Identification of the factors that enable or threaten renewed and reset services delivery. An agreed minimum service for rapid deployment in future emergencies and risks associated with a lack of minimum service provision. Timetable: Months 1-2: Rapid review, agree data collection tools, train staff. Months 3-8: Collect and analyse routine quantitative and qualitative data. Month 9: Synthesize data. Form draft model and practices to start, stop or continue . Months 10-12 Assess consensus. Month 13-14: Completion of NIHR report. Dissemination.