Long ADHD wait times leave families feeling powerless and 'forever in limbo'

Families are feeling stressed, powerless and 'forever in limbo' as they wait months, or sometimes years, for Attention-Deficit Hyperactivity Disorder (ADHD) assessments, according to a new study. 

Research led by the University of Southampton and King's College London examined the experiences of parents navigating waiting lists for ADHD diagnosis with Child and Adolescent Mental Health Services (CAMHS) in the UK. 

NHS data for the end of September 2025 shows that of those children (up to 17 years old) waiting for an assessment with the service, over 63 percent spent more than a year on the list, and a third of these were waiting over two years. 

CAMHS are experiencing enormous demand to offer timely support to young people. Staff working in these services are under huge pressure, and in-turn, parents and their children, are also suffering – with some concern that long wait times could exacerbate ADHD symptoms." 

Dr. Ellen Hedstrom, lead author

She adds: "Through our study, we wanted to better understand how parents experience the time between their child's referral, an ADHD assessment, and a diagnostic outcome. Also, what impact this has on them and their child." 

Study findings are published in the journal Health Expectations. 

The researchers conducted anonymised interviews with a total of 41 parents of children aged between five and 11 years old. Their wait times ranged between seven months and over two years. Thirty percent of participants fell between an 18 and 24 month wait, and ten percent over two years. About 50 percent of children hadn't had their initial ADHD assessment at the time of interview. 

Strong feedback was given to the research team by parents. Many of felt that: 

• Communication about wait time status was either non-existent or unsatisfactory. 

• Lengthy wait times negatively impacted the mental health and wellbeing of both themselves and their child. 

• Uncertainty led them to feelings of powerlessness, anxiety and being forgotten. 

• Finding a crisis care contact was a struggle, or that support they'd accessed was inadequate. 

• There's pressure to get a diagnosis because it can be essential to access support or treatment, for example at school.  

Many parents believed there was a disparity between the support they felt they needed and the support they received. 

As one parent, Jayne, put it: "It's hard because there is no support, at the moment, until you get that diagnosis and you're forever in limbo." 

Another, Jaz, said: "We've wasted over 2 years of her education, it is a huge percentage. And in that time, she was just getting further and further behind." 

Others were grappling with whether they should try and find the money to go private, as in the case of Sarah: "We are struggling a bit and it would be nice to know whether we should be trying to save up to get him seen privately, if it's gonna be years and years, then that's what we'd do. If it's gonna be another 6 months, then we'll wait." 

At the same turn, there was also empathy for health care staff and understanding that clinical services are under enormous strain. Some parents said they wanted to place as few demands as possible on staff, due to this. 

Parents' suggestions for improvement included regular updates of their status on the waiting list, including confirmation of wait times; a digitised system where parents could logon, check any progress, or book appointments; also, the idea of a named key-worker who they could turn to for help and support while waiting. Parents also expressed the need for help with skills and strategies for themselves to manage the behavior of their children. 

Meanwhile, the authors of the study point to a recent successful local authority scheme which piloted a neurodiversity tool – offering early profiling from trained professionals. This gave parents and schools knowledge for early intervention to help children while they wait for formal diagnosis. 

"Many tools and platforms already exist, or could be developed to meet the needs of CAMHS," concludes Dr Hedstrom. "This would not only give parents more autonomy in the way that they manage their time on a wait list and how they access much-needed information, but also alleviate the burden on mental health services, resulting in a more efficient service."