ABSTRACT
Introduction: Children and young people (CYP) with a neurodisability often have complex needs which can significantly impact their quality of life. Unmet non-medical needs negatively correlate with well-being. COVID-19 has amplified the pressure on this population, catalysing our proposal for a new support service, based on the social prescribing link worker (LW) model supported by NHS England. Our innovative scheme will identify eligible CYP and their families within a hospital setting: with their agreement, a LW will help find and embed solutions to their unmet non-medical needs. The aim of this study was to gather the views of parents of CYP with neurodisability on the proposed service. Patients and methods: Forty UK-based parents of CYP with neurodisability completed an online survey (Qualtrix), distributed through social media. 11/40 were parents of young adults with disability. 28/40 of the CYP had cerebral palsy and/or autism. Results: COVID-19 had exacerbated circumstances for 90% of respondents. All except one were in favour of LW support;though only 7.5% previously knew what a LW was. Supporting their child towards independence;mental health;and social networks were priority areas. Reservations included not wanting input if their child was seriously ill;distinguishing between LW and social worker;worrying about whether the LW would have adequate specialist knowledge;and funding (postcode lottery). Conclusion: Respondents were strongly in favour of the proposed service. Based on their feedback, we will provide detailed information about the LW role, and recruit and support LW staff to provide a high quality, sustainable service.