Families feel stressed, helpless and “permanently at a loss” while waiting months or even years for attention-deficit/hyperactivity disorder (ADHD) evaluations, according to a new study.
The study, led by the University of Southampton and King’s College, London, investigated the experiences of parents navigating the UK’s Child and Adolescent Mental Health Service (CAMHS) waiting list for ADHD diagnosis.
NHS data at the end of September 2025 shows that of children (up to the age of 17) waiting to be assessed for this service, more than 63% have been on the list for more than a year, with a third of them waiting more than two years.
CAMHS faces huge demands to provide timely support to young people. Staff working in these services are under enormous pressure, and parents and their children are also suffering as a result, with some worrying that long waiting times could worsen ADHD symptoms. ”
Dr. Ellen Hedstrom, first author
She added: “Through our research, we wanted to better understand how parents experience the time between their child’s referral, ADHD assessment, and diagnosis. We also wanted to know how this impacts parents and children.”
The study results are published in the journal Health Expectations.
Researchers conducted anonymous interviews with 41 parents of children between the ages of 5 and 11. Their wait times ranged from seven months to more than two years. Thirty percent of participants waited 18 to 24 months and 10% waited two years. Approximately 50 percent of the children had not received an initial ADHD evaluation at the time of the interview.
Parents provided strong feedback to the research team. Many felt like:
Many parents believed there was a disparity between the support they felt they needed and the support they received.
One parent, Jayne, said: “Until a diagnosis is made, it is difficult to know that there is no support available at this time and you will be left forever in limbo.”
Another, Jazz, said: “We have wasted more than two years of her education. The percentage is huge. During that time she has fallen further and further behind.”
Some, like Sarah, were wondering whether they should find the money to keep their stories private. “We’re having a bit of a hard time, and I want to know if we should save up the money to take him private. If it takes years, we’ll do it. If it takes another six months, we’ll wait.”
At the same time, there was empathy for medical staff and an understanding that clinical services are under tremendous strain. For this reason, some parents said they wanted to make as few demands on staff as possible.
Suggestions for improvement from parents included regular updates on waiting list status, including confirmation of waiting times. A digitized system where parents can log on to check progress and make reservations. The idea of a designated key worker who could be called upon for help and support while waiting was also considered. Parents also expressed a need for support with skills and strategies to self-manage their child’s behavior.
Meanwhile, the study’s authors point to a recent successful local authority scheme trialling a neurodiversity tool that provides early profiling by trained professionals. This has given parents and schools knowledge about early intervention to help children while they wait for a formal diagnosis.
“Many tools and platforms already exist or could be developed to meet the needs of CAMHS,” concludes Dr. Hedstrom. “This will not only give parents more autonomy in how they manage their time on the waiting list and access the information they need, but it will also reduce the burden on mental health services, making them more efficient as a result.”
sauce:
University of Southampton
Reference magazines:
Hedstrom, E. Others. (2026). “Until you get a diagnosis, you’re forever in limbo” – the experience of a parent who was waiting for an attention-deficit/hyperactivity disorder evaluation by child and adolescent mental health services. Expectations for health. DOI: 10.1111/hex.70569. https://onlinelibrary.wiley.com/doi/10.1111/hex.70569
