The impact of delayed diagnosis
Our complaints show that people can experience significant delays in diagnosis, and in accessing broader support, when assessment findings are not communicated clearly, when NICE guidelines are not followed consistently, and when people and their families are left unclear about what NHS services will provide.
These delays can have lasting impacts on education, wellbeing and access to appropriate services. Consistent, transparent and high-quality assessment pathways are essential for ADHD and autism services to work effectively for patients, families and clinicians.
Patient case study: impact of delayed autism diagnosis
The complaint
Mr C complained that James Paget University Hospitals NHS Foundation Trust missed opportunities to identify autism and failed to provide his family with important information from his autism assessment. Although the Trust told his parents he did not meet the criteria for an autism diagnosis, it did not share important assessment findings that indicated a stronger possibility of autism. The Trust discharged Mr C from its services rather than keeping him under review or offering a second opinion. Mr C said this delayed his autism diagnosis by several years, affected his social, emotional and mental wellbeing, and meant he missed opportunities for support including access to a specialist college course. Concerned about the impact on his development, his parents ultimately paid for a private assessment because they felt they had no alternative.
The outcome
We found that the Trust failed to follow NICE autism guidance when it withheld relevant assessment findings, changed information contained in the assessment feedback and discharged Mr C without keeping him under review or offering a second opinion. We found that these failings delayed access to a full understanding of his needs, created uncertainty about whether he could have received an earlier diagnosis and caused distress for Mr C and his family.
We recommended an apology, reimbursement of the costs of the private assessment, and that the Trust develop an action plan to make sure similar failings do not happen again.
‘Had he received an earlier diagnosis, he could have secured a space on this course which would have met his needs however he was out of full-time education for eight months whilst we worked tirelessly to secure a suitable setting at an autism specialist school. [He] flourished at this setting, with his needs met and known.’ Mr C’s mother