Experiences of accessing neurodevelopmental services
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Healthwatch organisations across Sussex surveyed 136 people in February 2025 about their experiences of accessing neurodevelopmental services. Around half of respondents had sought support for themselves and 40% for a child. The strongest concern was waiting times, with 86 respondents reporting they were very dissatisfied with the wait for assessment. Many people described waiting years for autism assessments and reported little communication or support while waiting.
Respondents also reported dissatisfaction with the information, advice and support available before and after referral. Many felt communication from services was poor, with limited updates about waiting lists and few meaningful support options available while awaiting assessment. Some families reported paying privately for assessments because NHS waiting times were so long.
Access to wider healthcare services was another concern. Seventy-three respondents reported difficulties accessing GP services, and many described healthcare staff as having limited understanding of neurodivergent people's needs. Participants highlighted challenges attending appointments, managing communication during consultations and coping with busy healthcare environments. Some parents described hospital waiting areas as overstimulating and distressing for neurodivergent children.
Overall, the findings highlight significant concerns about long waiting lists, limited communication, lack of interim support and barriers accessing healthcare for neurodivergent people. Healthwatch encouraged people to continue sharing their experiences to help influence improvements to services across Sussex.