A deaf patient’s fight for a fair ADHD assessment
The Welsh Ombudsman upheld my complaint about lack of reasonable adjustments for a ADHD diagnostic test in South Wales. But after a 19-month battle, it's not over yet...
The assessment
The office where the ADHD assessment took place was in the same hospital as an acute mental health ward. When I walked towards that run-down Victorian building on a frosty late-November morning in 2024, my cochlear implants picked up the sound of a man’s tormented screams.
The office itself was small and cluttered with furniture. There was an unexpected extra person sitting next to me in an “observational capacity” as a new member of staff. The assessor sat opposite me and I felt like a spectator at a tennis match, moving my head to look at them both.
Already unnerved by the setup and location, I was asked about ADHD symptoms throughout my life. Despite answering as honestly and fully as I could, I forgot to mention several incidents that could have supported a diagnosis. Throughout the assessment, I was trying to stay calm while navigating the emotional memories of being hit, shouted at and dismissed for being scatty, dreamy and forgetful. The whole experience was emotionally and physically exhausting.
But how did it lead to this? Let’s go back to the 1970s…
Growing up deaf with ADHD symptoms
I was born severely partially deaf but wasn’t diagnosed until I was two and a half. After I was fitted with bulky body-worn hearing aids, intensive speech and listening therapy soon followed. I was talking by five and had audio-enhancing equipment for school lessons. But deafness still had an invisible impact that made it hard for many people to grasp. Throw ADHD traits into the mix and it was easier to blame a child for being lazy, scatty, inattentive and needed to turn up the volume on their hearing aids.
After becoming profoundly deaf in my mid-30s, I was fitted with cochlear implants, which considerably improved my ability to understand speech without lipreading. But as a prelingually deaf person, my brain works harder to listen and formulate a response. I still need extra support, including a quiet, distraction-free environment, clear instructions and additional time to process complex information. But it can be difficult to have the foresight to ask for this when you’re dealing with the fog of a potentially ADHD-affected brain that can’t plan or think ahead very well.
Seeking diagnosis
Menopause coincided with lockdown and I really struggled to cope. A chance search on the internet led me to learn more about ADHD and I felt relieved that my experiences were similar to many others diagnosed with the inattentive type.
I read that treatments and support could help people navigate life better. And I wanted the validation that I should have been supported more as a child - rather than made to feel not good enough. The GP referred me in 2021 and I joined the long waiting list and patiently waited my turn.
Catch 22
Life’s challenges and commitments to family and work makes thinking ahead and planning for appointments difficult: I don’t think about them until I’m confronted with a situation that I obviously need support for. And then I spend the rest of the week berating myself for not being more organised. It’s ironic that my lack of preparation led to a non-diagnosis.
In answering the ADHD assessment questions, I had to draw on painful memories. My automatic ‘don’t pity me’ masking response took over. I tried to balance examples of misery and failure with achievement and family support. And I was desperately trying to make light of it – that it wasn’t all bad.
In the stress of it all, I forgot to tell them about key moments in my early 20s that would have almost certainly raised an ADHD flag. Had I been better prepared and more supported by the ADHD team, I would have disclosed them.
No reasonable adjustments
In Wales, the Accessible Information and Communication Standard in Healthcare was launched in September 2025 to help ensure that patients with sensory loss and other disabilities are not disadvantaged by inaccessible information or communication. It encourages NHS staff to be proactive in removing barriers to healthcare. Although my assessment took place before its launch, health centres were already expected to provide accessible information, including interpreters, translation and alternative formats such as Braille, large print or spoken text.
In practice, none of this seemed to shape how the ADHD team communicated with me. Because I was described as “articulate” at triage, there seemed to be an assumption that I could manage without additional support. For a deaf person, that kind of description can carry an uncomfortable ableist undertone: that speaking clearly means being able to access communication without further support. I was never asked what support I needed. Even the appointment was arranged informally by phone with no apparent thought or curiosity as to how much information I would be able to hear or understand.
The assessment was arranged nearly a year after triage had identified ADHD symptoms. By then, I had been waiting three years and felt elated to finally have a date. But I received no written confirmation and no explanation of what the assessment would involve. That information could have helped me prepare and remember key examples. Instead, I only realised once I was in the room that I had effectively been expected to “do my homework” without ever being told what it was.
‘You don’t have moderate to severe ADHD’
I was shocked that they decided I didn’t meet the diagnostic criteria for moderate to severe ADHD. The assessor also mentioned that I had sat in the same chair, held down jobs, gained qualifications, maintained stable family relationships and had no backstory of self-destruction, substance abuse or an uncontrollable desire to interrupt people.
The assessor seemed oblivious to my distress. It felt like a gut punch, reaffirming all those years of belittling names and diminishing eye rolls that made me feel worthless and incapable of responsibility. There was no support on what to do next and no recourse for a second opinion.
When the memories of all the things I should have told them about, came flooding back later along with wet continuous tears, I initially blamed myself for not preparing more. But why was there no letter? No information about the test? Why should I have to seek this out? Why did the assessor and her team – who all knew I was deaf – assume that my ‘articulateness’ meant that I didn’t need any reasonable adjustments.
Disappointing response from the Health Board leading to a Public Services Ombudsman of Wales (PSOW) investigation
As my anger grew, I complained about my experiences to the regional Health Board. But despite admitting that my experience should have been better, they still backed the ADHD team and told me to take my complaint elsewhere if I was still unhappy. There was no acknowledgement of how lack of reasonable adjustments had affected my ability to answer questions on the same level as a hearing person. Much, much later, the health board had to offer an ‘unreserved apology’ for not thinking about how this ‘might affect the integrity and procedural fairness of the assessment.”
With the help of Llais, the Welsh health and social care advocacy organisation, the Wales Ombudsman agreed to investigate. After 15 months, the Ombudsman recognised the injustices and upheld all my complaints, recommending that staff undertake training and awareness of National Institute of Clinical Excellence (NICE) guidelines in complying with the 2010 Equality Act (EA). The Ombudsman also recommended that the Health Board apologise and redo my assessment. I feel validated, but my experience is only part of a wider picture: disabled people are still frequently denied equitable access to healthcare by a system that never had them in mind.
These failures to accommodate people are widespread and can have a devastating impact.
• Last year, a NHS report found that patients with learning disabilities are much more likely to die 20 years earlier than average.
• A joint RNID/SignHealth study into health inequalities for deaf people revealed that inconsistent adherence to the Accessible Information Standard (AIS) by healthcare providers was causing trauma and poor care. This includes poor maternity care for Deaf/BSL women due to lack of interpreters and staff awareness which has led to a disproportionately high number of mothers-to-be suffering significant harm.
Letter of forced apology and blunder
The Ombudsman made a series of recommendations to the Health Board which included a letter of apology to me within a month and a reassessment within four months. PSOW also recommended that I be consulted about my communication needs before reassessment takes place.
The letter arrived as scheduled, but disappointment soon set in. It was genuinely apologetic, but contained only broad promises and generalised references to actions such as staff training on NICE guidelines and reasonable adjustments. It did not directly the address the communication issues I had originally complained about like the lack of printed confirmation and information and the far from ideal conditions of the testing environment.
Most worrying of all, despite the Ombudsman recommending that the Health Board consult me about my communication needs, their actions suggest otherwise. The letter of apology stated that they are waiting for the “availability” of a translator before scheduling the reassessment. I do not need a translator. Nowhere in the PSOW report is there mention of me using BSL as a first language or relying on an interpreter.
The battle continues…
Despite this, I’m relieved that the Health Board have committed to another assessment. For me, going private and paying for treatment is not financially sustainable in the long term. But due to a lack of resources, I have no choice but to be reassessed by the same Health Board team.
So, the battle continues. Will the next assessment be done with fresh eyes? Or will the original decision still cast a shadow over it? Whatever happens, I feel relief at being validated by an impartial and independent body. And I hope in some small way, it will improve the service for other disabled people.