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25/04/25

2024 CHECT Members Survey Feedback Thank you so much to everyone who took part in our 2024 Members’ Survey. For the first time this year, we decided to look at responses in terms of three main age groups * to give more specific feedback on the experiences and priorities of different age / stage groups. 35% of respondents were parents of children in active treatment (around 0-8 years) 19% of respondents were families whose children are post-treatment (around 9-23 years) 21% of respondents were adults who had retinoblastoma as children (24+) Active treatment: Families whose children were in active treatment said that the CHECT support they valued most was our diagnosis information, face-to-face / emotional support, and our genetics information. When asked what was the most helpful thing CHECT had done, many mentioned receiving significant emotional support from Lena and Sarah, who provided comfort, understanding, and consistent check-ins during difficult times. Respondents highlighted how the emotional support made a real difference during hospital visits and treatment periods. Financial assistance, including grants for travel and practical needs like a washer, was frequently noted as crucial, as was help with applying for benefits like DLA (Disability Living Allowance) or the Blue Badge. CHECT’s website and information leaflets were also frequently mentioned for providing clear, reliable information. 65% of families said contact with others affected by Rb was very important / important for their child’s wellbeing, and 67% said contact with CHECT had helped a lot / a little with reducing feelings of loneliness and isolation. Half of these families had attended family meet-ups, and of these 89% found them valuable. Parents said they wanted something where their children were entertained so that they could interact with other parents. In terms of online events, topics most of interest were late effects, research and visual impairment Post treatment: 21% no visual impairment 41% monocular vision 3% monocular vision and sight impaired 15% severely sight impaired / blind 21% sight impaired / partially sighted Those families whose children were post-treatment said the CHECT support services they had valued most were the face-to-face support during treatment, and our diagnosis and treatment information. Emotional support was the most frequently mentioned form of help these families had received, with many respondents highlighting the charity’s emotional backing during difficult times, such as diagnosis and treatment. Many noted that the charity was there every step of the way, offering support when needed and being present through various stages of the journey. Several responses mentioned family activities and experiences that CHECT had helped them to access (like Rays of Sunshine or football match mascot opportunities), which provided valuable respite. Financial help, grants, and support with treatment-related logistics (such as chasing eye appointments) were also frequently cited. 70% said contact with others affected by Rb was very important / important for their child’s wellbeing, and 46% said contact with CHECT had helped a lot / a little with reducing feelings of loneliness and isolation. Almost 80% of this group had attended a family meet-up, and of these 97% found them valuable. This group are looking for meet-ups that are family orientated, activity based, and also teen-focused. For online events, they are interested in sessions on research, genetics and late effects. Adults 9% no visual impairment 49% monocular vision 5% monocular vision and sight impaired 14% severely sight impaired / blind 23% sight impaired / partially sighted Point of treatment pathway 35% are under adult services while 56% are discharged from all services. 5% said they were under the National Artificial Eye Service, and 5% said they were undergoing active treatment. Adults who had Rb as children told us the CHECT support they found most valuable was our information for adults and genetics information, and the Beyond Rb Facebook Group. For this group, the most useful things CHECT had done included helping them feel less alone by providing emotional support during difficult times; offering updates on treatment developments, providing genetics information and raising awareness about issues like secondary cancer; and facilitating connections with others affected by retinoblastoma, including through Facebook groups and in-person meetups, which provide an invaluable space for support and shared experiences. 53% said contact with others who had had Rb was very important / important, and 62% said CHECT had helped a lot / a little to reduce feelings of loneliness or isolation. Although less than a third of respondees had attended a Beyond Rb event, 92% of these found them valuable. In general adults said they were looking for a relaxed supportive environment at events where they could share experiences. The top three topics for this group for online events would be genetics, late effects and psychology. Across all age groups the main reason for not attending events was distance and convenience, with many adults also mentioning they did not feel comfortable meeting up with others with shared experiences. NB free text responses to the survey have been collated with the help of AI. * this summary excludes feedback from groups including parents responding on behalf of adult children, and grandparents. This information is recorded elsewhere.