H014 ‘You are not alone’ a three year project to develop our Huntington’s disease youth engagement service (HDYES)

<h3>Background and Aim</h3> HDYES directly supports children and young people (CYP) affected by Huntington’s disease (HD) in England. Funding from the National Lottery Community Fund has strengthened our capacity and our aim is to support 300 CYP (8 – 25), 150 parents, guardians and carers (PGC) and 200 professionals over three years from June 2023. <h3>Methods</h3> Our expanded team supports CYP through 1:1 support/events; PGC through 1:1 support/courses and professionals through training. Key to the project is our HD Youth Voice group, who are changing the landscape, sharing their experiences and the powerful message that you are not alone. <h3>Results</h3> Reporting on 5 months of data, showing early change: We supported 190 CYP, 29 had enough ‘distance travelled’ data to report on, this showed early change with 30% gaining a better understanding of HD; 56% feeling less isolated and 17% feeling more resilient. We supported 45 PGC, 18 completed a survey, of those 100% had better understanding of HD, 87% could better support their child, 89% were less isolated, 67% more resilient and 89% more prepared for the future. We trained 127 professionals, 40 completed a survey, 100% said they had increased knowledge and were better able to support a CYP affected by HD. <h3>Conclusion</h3> When they join HDYES, CYP have lower knowledge about HD, connection to others, future preparedness and, particularly, resilience. This appears to increase as they receive more support from HYDES. The confidence of PGC, and professionals, in understanding HD and supporting CYP increased immediately after training or support from HDYES.