It usually starts with a subtle shift in tone at school or a letter home about “disruptive behaviour”. Soon, family life is strained with confusion, and your child starts to internalise a devastating (and very wrong) idea that they are “broken”. You reach out to the Child and Adolescent Mental Health Service (CAMHS) to understand what’s happening, only to be told: “You’re on the waitlist. We’ll be in touch.” Then: radio silence.
For families seeking a UK CAMHS Attention-Deficit/Hyperactivity Disorder (ADHD) assessment, this agonising limbo is a shared reality. ADHD affects around 5% of children worldwide, and an estimated 621,000 children and young people in England (NHS England, 2025). Yet, recent NHS data reveals a systemic crisis: nearly two-thirds of children on ADHD waitlists wait over a year, and around a third of those have waited over two years (NHS England, 2025).
Han et al.’s Mental Elf blog explored how lengthy CAMHS delays exacerbate mental health distress and strain family dynamics. However, the specific parental experience of waiting for an ADHD assessment is surprisingly under-researched.
A new qualitative study by Hedstrom and colleagues (2026) shines a light into this administrative black hole, exploring what parents feel like when they hold their breath for years waiting for CAMHS to answer.
Methods
Nested within the OPTIMA trial (a larger study evaluating parental digital support), this study explored parental waiting experiences through semi-structured interviews with 41 parents of children aged 5–11 across London, Southampton, and Nottingham. Half the sample was still awaiting an initial CAMHS assessment, with 40% waiting over 18 months.
Although purposive sampling captured diverse ethnic and socio-economic backgrounds, participants were predominantly educated mothers (97.2%). Data were analysed using reflexive thematic analysis (RTA). Notably, Patient and Public Involvement (PPI) panel members with lived experience served as co-researchers and co-authors; co-designing the interview schedule, reviewing transcripts, and shaping the analytical framework.
Results
The study captured experiences of 41 parents supporting children aged 5–11 across three UK locations. During interviews, nearly half (48.8%, n = 20) were trapped in limbo awaiting an initial CAMHS appointment. A staggering 39.1% (n = 16) had been on the waitlist for over 18 months, with 9.8% waiting more than two years.
The analysis generated six overarching themes reflecting systemic opacity, emotional distress, and the battle for support:
- Uncertainty leads to feeling powerless
- Parents reported near-total radio silence after referral acceptance. This meant families were left in the dark, unable to prepare their child for what was coming.
- To regain agency, parents had to chase services themselves, and some recognised the privilege that being able to do this reflected.
- Some considered private routes, but financial constraints and fears that schools wouldn’t accept private diagnoses left them paralysed.
- Communicating important information
- Families faced severe communication gaps.
- Pre-assessment information was patchy, leaving parents anxious about what to expect.
- Crisis support was a concern; when children expressed suicidal ideation or distress, some parents could not find who to contact, and others reached a crisis team but felt the support was inadequate.
- The importance of getting a diagnosis
- Parents viewed a diagnosis not as a medical label, but as an essential gateway to formal educational support and validation.
- This highlights how societal and educational barriers can force families to seek a clinical label just to access basic understanding and support.
- Accessing support and signposting
- Official signposting was sparse and inconsistent, leaving parents to self-educate using social media and peer groups for strategies.
- Although online spaces offered valuable peer support, some parents found them judgmental, overwhelming, and anxiety-inducing.
- The impact of waiting
- Parents described the strain of waiting as harming their own mental health, including anxiety. This suggests that waiting is not a neutral period for parents or children.
- Children experienced low self-esteem and self-blame, with unaccommodated school challenges leading to deteriorating attendance and wasted educational years.
- Expectations and recommendations
- Parents called for simple, humanising service adaptations, such as regular digital check-ins, transparent waitlist tracking, and named key workers, alongside meaningful post-diagnostic aftercare and holistic family guidance.
Ultimately, these findings show that waiting for CAMHS is not a passive pause, but an active hardship where systemic silence places the full weight of supporting neurodivergent children onto often unsupported and exhausted parents.
Conclusions
Authors concluded that the period spent waiting on a CAMHS list is characterised by profound uncertainty, placing emotional and practical burdens on parents and children. Parents did recognise the immense systemic strain services operate under, but the current lack of communication, signposting, and interim support leaves families feeling abandoned with no clear path ahead.
Hedstrom et al. (2026) suggest service changes such as clearer information on wait times, online resources and booking systems, and psychoeducation for parents while they wait, to give parents more agency and reduce the burden on families and services.
Strengths and limitations
Hedstrom and colleagues (2026) address an urgent gap in understanding the CAMHS ADHD waitlist crisis through a poignant study on parental waiting experiences. A major strength is its co-produced design, which embeds PPI members as co-authors who shaped interview questions and data analysis.
Purposive sampling across three diverse UK sites yielded a rich dataset. The study also offers important transparency regarding participant ethnicity, an essential step toward understanding equity in access to neuro-affirmative support. However, it is important to consider the methodological tensions that lie beneath its valuable findings.
The authors say they used reflexive thematic analysis (RTA), yet their method cites earlier, generic thematic analysis papers (Braun & Clarke, 2006; 2017) rather than texts that define RTA’s subjective, non-codebook philosophy (e.g., Braun et al., 2023). The only RTA-specific text they cite (Byrne, 2022) is used for the thematic map, not the method. Unsurprisingly, authors state that themes “emerged” with multiple coders using a “thematic framework.” In true RTA, themes are interpreted and generated through researcher subjectivity, not “discovered” by multiple individuals. This approach sits much closer to codebook or qualitative content analysis, which obscures the paper’s underlying research philosophy. Additionally, despite claiming an RTA approach, author positionality reporting is thin, with minimal reflection on how the research team’s clinical or academic backgrounds shaped data interpretation, nor detail on whether PPI co-authors held decision-making power or were simply engaged as an “empathy exercise” (Powell, 2025).
The introduction relies on deficit-focused framing without engaging neurodiversity-affirming frameworks. Using medicalised, deficit-based language while claiming a qualitative, reflexive ethos creates a philosophical misalignment.
A hint of selection bias? As parents were recruited from the OPTIMA trial, they may possess higher health literacy, agency, or distress than broader waiting populations. Further, 63% held higher education qualifications and 97% were mothers, overlooking fathers’ experiences and intersecting socio-economic barriers.
Implications for practice
This study should serve as a wake-up call for commissioners, CAMHS managers, and education leaders. Although systemic underfunding cannot be solved overnight, the authors show that much of the family’s distress stems not just from the wait length, but the void of communication and support surrounding it.
Practitioners and policymakers could, therefore, champion immediate shifts across three areas:
- 18 to 24 months during a pivotal developmental window represents an unacceptably large portion of a child’s education. Schools are legally required to provide reasonable adjustments (support) based on identified need, not a clinical diagnosis (Equality Act, 2010). Yet, while some settings lead the way in proactive inclusion, practice remains a frustrating postcode lottery. Rather than relying on profiling tools that risk categorising children, schools must embrace flexible, universal design principles (Al-Azawei et al. 2016; Mayer et.al. 2014). Adapting learning environments to match young people’s unique sensory, communication, and learning needs must happen immediately, rather than forcing families into limbo before offering basic human accommodations.
- Services should eliminate the “black hole” experience that leaves families isolated and unsupported. Simple, accessible infrastructure such as transparent online portals where parents can confirm waitlist status, access neuro-affirmative resources and peer-led guidance, or receive regular check-ins, would restore agency and safety without placing an unsustainable burden on practitioner capacity.
- Future research must move beyond merely documenting parental distress to evaluating co-produced, community-driven support. Future studies must adopt neurodiversity-affirming frameworks, moving away from tokenistic involvement and reclaiming authentic co-production where neurodivergent communities hold real decision-making power (Powell, 2025). Future research should also explore how cultural expectations, socio-economic factors, and intersecting identities shape waiting experiences for historically marginalised and underserved communities.
A personal reflection
Leaving children and families in administrative limbo does more than delay support; it confirms a child’s worst fear: that they do not matter and are fundamentally “broken”. When services fail to communicate, they mirror an unaccommodating world that treats natural brain differences as deficits. As a late-identified AuDHD (ADHD and autistic) woman working in higher education and neurodiversity research, I see daily how systemic neglect (not neurodivergence itself) drives psychological distress. Outsourcing care to exhausted parents navigating school pushback, without guidance, is inhumane.
It’s time we break the radio silence and offer validation, communication, and environmental adaptations from day one.
Statement of interests
Dr Lauren Powell is an academic with lived experience as a late formally identified autistic and ADHD woman. She is a Senior Lecturer in Psychology and Education whose research focuses on qualitative methodologies, inclusive education, and neurodiversity, with a focus on co-production and qualitative methodologies. The author has no direct personal, financial, or professional involvement in the primary study evaluated. This blog was independently drafted by the author with the assistance of AI tools for language refinement only. The final content was reviewed, edited and approved by the author.
Editor
Edited by Dr Dafni Katsampa.
Links
Primary paper
Ellen Hedstrom, Katarzyna Kostyrka-Allchorne, Claire Ballard, Naomi James, Hannah Wright, David Daley, Cris Glazebrook, Jana Kreppner, Claire Cattel, Douglas Gordon, Natalie Gordon, Tessa Tuttlebee & Edmund Sonuga-Barke (2026). ‘Until You Get the Diagnosis You’re Forever in Limbo’—Parents’ Experiences of Waiting for an Attention‐Deficit/Hyperactivity Disorder Assessment With Child and Adolescent Mental Health Services. Health Expectations, 29(1), e70569.
Other references
Al-Azawei, A., F. Serenelli, and K. Lundqvist, Universal Design for Learning (UDL): A content analysis of peer reviewed journals from 2012 to 2015. Journal of the Scholarship of Teaching and Learning, 2016. 16(3): p. 39-56.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative research in psychology, 3(2), 77-101.
Braun, V., Clarke, V., Hayfield, N., Davey, L., & Jenkinson, E. (2023). Doing reflexive thematic analysis. In Supporting research in counselling and psychotherapy: Qualitative, quantitative, and mixed methods research (pp. 19-38). Cham: Springer International Publishing.
Clarke, V., & Braun, V. (2017). Thematic analysis. The journal of positive psychology, 12(3), 297-298.
Meyer, A., D.H. Rose, and D. Gordon, Universal design for learning: Theory and practice. (No Title), 2014.
NHS England. (2025). Independent ADHD Taskforce.
Powell, L. (2025). We’re not your empathy exercise: Reclaiming co-production in neurodivergent research and practice. Neurodiversity, 3, 27546330251363393.
Sayal, K., Prasad, V., Daley, D., Ford, T., & Coghill, D. (2018). ADHD in children and young people: prevalence, care pathways, and service provision. The Lancet Psychiatry, 5(2), 175-186.
The Equality Act (2010).