Experiences of Children and Young People Respondents to My Neuro Survey

ABSTRACT

My Neuro Survey represents the fourth iteration of our biennial national neurological patient experience survey. For the first time, the 2021/22 survey included a version specifically for children and young people affected by neurological conditions and those who support them. The survey ran online and in select clinics between October 2021 and February 2022. Questions covered key topics including the impact of Covid-19, diagnosis, access to treatment and care, mental health and wellbeing, transition and education. Six hundred and twenty-nine people shared their experiences through the children and young people's survey. Eighty-seven percent of respondents were parents, 11% were children and young people themselves while 2% reported as other. The most reported neurological conditions were epilepsy, Tourette Syndrome, hydrocephalus and autism. Key topics and findings from the experiences of children and young people and those who support them are touched on below. 56% (n = 317) of respondents said their condition made their mental wellbeing much worse. 63% (n = 349) of respondents reported that their mental health has worsened during the pandemic. Sixty-six percent of respondents reported their mental wellbeing needs were being met to a small extent (31%, n = 159) or most often, not at all (35%, n = 179). 85% (n = 250) applicable respondents reported that they had not been offered a named worker to support the transition process between pediatric and adult services but would find this helpful. Twenty-percent (n = 89) of applicable respondents reported not being given an explanation at diagnosis or when they were first told about their condition. The experiences of children and young peoples survey respondents helped to inform a series of national policy reports with targeted recommendations, 'Together for the 1 in 6', and a campaign calling on Governments across the UK to '#BackThe1in6' and set up a Neuro Taskforce. Our presentation would explore key findings in detail and highlight opportunities to improve patient experience.