Long Adhd Wait Times Leave Families Feeling Powerless And 'forever In Limbo'

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

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

NHS data for the extremity 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 nan list, and a 3rd of these were waiting complete 2 years. 

She adds: "Through our study, we wanted to better understand really parents experience the clip betwixt 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 successful nan journal Health Expectations. 

The researchers conducted anonymised interviews pinch a full of 41 parents of children aged betwixt 5 and 11 years old. Their hold times ranged betwixt 7 months and complete 2 years. Thirty percent of participants fell between an 18 and 24 month wait, and 10 percent over two years. About 50 percent of children hadn't had their initial ADHD assessment at nan clip of interview. 

Strong feedback was fixed to nan investigation squad by parents. Many of felt that: 

Many parents believed there was a disparity betwixt nan support they felt they needed and nan support they received. 

As 1 parent, Jayne, put it: "It's difficult because location is nary support, astatine nan moment, until you get that test and you're everlastingly successful limbo." 

Another, Jaz, said: "We've wasted complete 2 years of her education, it is simply a immense percentage. And successful that time, she was conscionable getting further and further behind." 

Others were grappling pinch whether they should effort and find nan money to spell private, arsenic successful nan lawsuit of Sarah: "We are struggling a spot and it would beryllium bully to cognize whether we should beryllium trying to prevention up to get him seen privately, if it's gonna be years and years, past that's what we'd do. If it's gonna be different 6 months, then we'll wait." 

At nan aforesaid turn, there was also empathy for wellness attraction unit and understanding that objective services are under enormous strain. Some parents said they wanted to spot as few demands as possible on staff, owed to this. 

Parents' suggestions for improvement included regular updates of their position connected the waiting list, including confirmation of wait times; a digitised strategy wherever parents could logon, cheque immoderate progress, aliases book appointments; also, nan thought of a named key-worker who they could move to for help and support while waiting. Parents also expressed nan request for thief with skills and strategies for themselves to manage nan behaviour of their children. 

Meanwhile, nan authors of nan study constituent 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 involution to thief children while they hold for formal diagnosis. 

"Many devices and platforms already exist, or could beryllium developed to meet nan needs of CAMHS," concludes Dr Hedstrom. "This would not only springiness parents much autonomy successful nan measurement that they negociate their clip connected a hold database and really they entree much-needed information, but besides alleviate nan load connected intelligence wellness services, resulting successful a much businesslike service." 

Source:

Journal reference:

Hedstrom, E., et al. (2026). “Until You Get nan Diagnosis You’re Forever successful Limbo” - Parents’ Experiences of Waiting for an Attention‐Deficit/Hyperactivity Disorder Assessment With Child and Adolescent Mental Health Services. Health Expectations. DOI: 10.1111/hex.70569. https://onlinelibrary.wiley.com/doi/10.1111/hex.70569