‘People have been let down’: the reality of adult ADHD diagnoses
Kirsty King
Attention Deficit Hyperactivity Disorder (ADHD) is a condition which affects around two to five per cent of school-age children, and is mostly diagnosed between the ages of six and 12 years old, according to the NHS. Some symptoms of ADHD include having a short attention span, being easily distracted and taking a long time to complete tasks. However, sometimes the condition is not recognised in childhood, and a diagnosis is given later as an adult.
The Scoop spoke to two young people who were diagnosed with ADHD after their schooldays were over, about the challenges they have faced accessing support in Northern Ireland.
Kayleigh Mills, a 26-year-old civil servant, was diagnosed with ADHD in February 2022. She recalls how in school “something was not quite right”, often finding that “focus was a problem”. She describes how she would “procrastinate a lot” and “day dream”, sometimes becoming so bored that it was “physically painful”. She also tended to “stay quiet” in class and “struggled with groupwork”. During school, she was placed on the Special Education Needs (SEN) register, but her ADHD symptoms remained unnoticed by teachers.
Eve Elliott, a 21-year-old Politics student at Ulster University, was diagnosed with ADHD at the age of 19. In school, she found she would alternate between being “hyper focused” and then “zoning out”. This led her to become a “perfectionist”, regularly “overcompensating” and feeling “exhausted and worn out” as a result. In group settings, she found that she “couldn’t get a word in”, and used private study periods as “downtime” to “recharge”. In hindsight, she believes her ADHD symptoms weren’t recognised in the classroom as she was “masking” and “didn’t resonate with the stereotype” of being disruptive, a word commonly associated with the condition. Eve notes that women and girls are “conditioned by society to be bubbly”, and furthermore, it’s “a trend across women’s health to be disregarded”.
For both young women, the challenges continued when they attended university. During her English undergraduate degree at the University of Kent, Kayleigh struggled to keep up with the workload, often “skimming” and “not reading books in full”. She also continued to find the “pressure to contribute” in group seminar discussions difficult. It was after the first month of her course when she failed to submit an essay that she concluded that “reasonable adjustments” were needed. However, upon reaching out to the Student Wellbeing services at the University, it was suggested that it was simply “depression” that she was suffering with, rather than ADHD.
Fast-forward to March 2020 when the Covid-19 lockdown began, Kayleigh was working remotely in Belfast in a customer service role and completing a Masters degree at Queen’s University Belfast. Being confined to her home as a result of the restrictions meant that the symptoms she had experienced previously were only exacerbated. These included “time-blindness”, “executive dysfunction” and difficulties “transitioning between tasks” from day to evening. Her symptoms prevented her from completing her Masters dissertation, meaning she graduated with a diploma instead.
Her heightened struggles during lockdown led Kayleigh to research ADHD, and on discovery that she could relate to many of the symptoms, she decided to make an appointment with her GP in June 2021. Here she was told that due to a lack of NHS funding, she would have to go down the private route to get diagnosed, which could take “five years”. However, thanks to a cancellation, she was able to get a 1-hour private appointment in December 2021, and was finally diagnosed with ADHD two months later in February 2022. Her problems weren’t over though, as she was then told she would have to “pay for medication”. It was recommended that she try Cognitive Behavioural Therapy (CBT) as an alternative, a talking therapy which she described as “not very helpful”.
In Eve’s case, following her challenging experiences in school, and after coming across relatable social media posts about how ADHD presents itself in girls, she decided to seek a diagnosis in June 2021. Like Kayleigh, she was given a private referral, and was eventually diagnosed with ADHD in November 2021. That Autumn, Eve also began the first year of a degree in Music at Trinity College Dublin, meaning she was going through “two big changes” simultaneously. Consequently, she found it both “unsettling” and “overwhelming” that she was “left hanging” regarding her ADHD diagnosis whilst she was also experiencing the “transition” to university in a new city. Furthermore, she equally struggled to adapt to online learning measures put in place due to Covid-19 restrictions at the time.
Despite feeling “validated” now knowing that she had ADHD, Eve felt that she was given “no support after diagnosis”. She explains that in the Southern Trust area where she currently lives, there are “no psychiatrists” and “no concrete NHS services” for ADHD. As a result, upon diagnosis she was told that a “GP pharmacist will not medicate you” because they “will not enter a shared care agreement”. However, she found herself in a catch-22 situation as “a private prescription” was also refused to her. This meant that despite assistance from Disability Support services at Trinity, the “lack of provision” for her needs in regards to medication access led her to drop out of her course in January 2022.
Clearly, both Kayleigh and Eve have faced a multitude of obstacles both before and after their diagnoses. Discussing ADHD services in Northern Ireland, Kayleigh believes the “biggest issue” is a “lack of funding”. She continues that there is a clear “discrepancy between Trust areas”, as they are “not really married policy-wise”. She talks specifically of the “state of the Belfast Trust”, and the issue that patients often have to be “referred to other trusts”.
Eve echoes this sentiment, stating “We need a funding strategy. Spreading awareness and relying on charities isn’t enough, we need services now. We need people in power to do their jobs, people have been let down.”
Regarding the current state of Adult ADHD Services in Northern Ireland, a spokesperson for the Department of Health has said, “Health and Social Care Trusts in NI meet the needs of adults with ADHD through a range of pathways, including general mental health services to help address functional symptoms e.g. anxiety, cognitive issues and psychology services, with psychologists providing a clinical opinion, on a case by case basis, to help inform a medical decision about prescribing medication.”
They continued, “The Mental Health Strategy 2021-2031 acknowledges that there are many specialist interventions required across mental health services. It undertakes to continue to develop understanding of specialisms within general mental health services, including those for ADHD. Within this context, officials within the Department are considering longer term arrangements for commissioning and delivering services for adults in relation to ADHD. Any future decisions in this area will likely be subject to ministerial approval and availability of funding.”
Kirsty King is Head of The Scoop and an English graduate from Queen’s University Belfast