For families referred to a UK Child and Adolescent Mental Health Service (CAMHS) for an attention-deficit/hyperactivity disorder (ADHD) assessment, the wait can become a difficult period in its own right. Parents in a new qualitative study described uncertainty about timelines, limited communication and concerns about how their children were coping at home and school.
ADHD affects around 5% of children worldwide. The source also cites an NHS England estimate that 621,000 children and young people in England have ADHD. Nearly two-thirds of children on ADHD waiting lists were reported to be waiting more than a year, with around a third of those waiting more than two years.
What the study explored
Hedstrom and colleagues interviewed 41 parents of children aged 5 to 11 in London, Southampton and Nottingham. The work was nested within the OPTIMA trial, a larger study evaluating parental digital support.
Almost half of the parents interviewed were still waiting for an initial CAMHS appointment. Sixteen participants had been waiting for more than 18 months, and some had waited for more than two years. The sample was predominantly made up of mothers, with mothers accounting for 97.2% of participants. The researchers noted that people who joined through the trial may have had higher health literacy, agency or distress than other families waiting for assessment.
People with lived experience were involved as patient and public involvement co-researchers and co-authors. They helped design the interview schedule, review transcripts and shape the analysis.
Uncertainty extended beyond the waiting time
Parents said that communication often became sparse after a referral was accepted. This left them unsure about where their child was on the waiting list, what an assessment would involve and how to prepare their child.
Some parents explored private assessments, but the study describes cost as a barrier. Parents also worried that schools might not accept a private diagnosis. In their accounts, diagnosis was not viewed only as a medical label. It could also offer validation and a route towards formal educational support.
While waiting, many families relied on social media and peer-support groups because official information was described as limited or inconsistent. Online communities could provide useful information and practical strategies, but some parents found them judgmental, overwhelming or anxiety-inducing.
Effects on children and parents
Parents described the wait as harmful to their own mental health, including through anxiety. They also reported low self-esteem and self-blame among children. When school difficulties were not accommodated, parents associated this with worsening attendance and lost educational time.
The accounts also included situations in which children expressed suicidal ideation or significant distress. Some parents said they struggled to identify crisis support, while others reached a crisis team but felt the response was inadequate. These findings underline the seriousness of gaps in information and support during a prolonged assessment wait.
What parents said would help
Parents called for support that continued throughout the wait rather than beginning only after an assessment. Suggestions described in the study included:
- regular digital check-ins;
- clearer information about expected wait times;
- transparent ways to track a child’s position on a waiting list;
- a named key worker or contact person;
- online resources and booking systems;
- psychoeducation for parents while they wait;
- guidance for the whole family; and
- aftercare following a diagnosis.
The study also points to the importance of support that recognises educational and emotional needs before a formal diagnosis is made. The source states that schools are legally required to provide reasonable adjustments based on identified need rather than a clinical diagnosis, although school practice was described as variable.
Why the findings need context
The interviews offer detailed insight into families’ experiences, but they do not represent every parent waiting for an ADHD assessment. Most participants were educated mothers, and the researchers noted that the sample may not fully capture fathers’ experiences or intersecting socioeconomic barriers.
The source also raises methodological questions about whether the analysis was best described as reflexive thematic analysis, given the use of multiple coders and a thematic framework. It notes limited reporting about researcher positionality and the decision-making power of the patient and public involvement co-authors.
Even with those limitations, the central message is clear: for these families, waiting was not an empty space between referral and assessment. It was a period marked by practical uncertainty, emotional strain and concerns about children’s education and wellbeing. More consistent communication and meaningful support during that time were identified as priorities.
AI tools were used to assist with the preparation of this article.
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