“MEDICATION hasn’t removed the doors in my mind, it’s just made them easier to navigate. I can finally choose which door to walk through, rather than feeling pulled toward all of them at once.”
These are the words of 47-year-old Belfast man John Ferris who last year was diagnosed with Attention Deficit Hyperactivity Disorder (ADHD), the developmental disorder associated with difficulty concentrating, hyperactivity, impulsivity and becoming overwhelmed with the world around you.
Across Northern Ireland, many adults potentially living with ADHD are being denied access to diagnosis and support.
Currently, there are no commissioned ADHD services in Northern Ireland. Access to diagnosis and treatment has been described as a “postcode lottery” by Peter McReynolds, Alliance MLA for East Belfast.
“Some trusts are struggling to meet demand. On one hand, this is understandable because they do not have to deliver these services as it is not commissioned. However, on the other hand, they are doing what they can with the limited resources they have to meet what the public is bringing to them.
“This leads to a disparity between waiting times across Northern Ireland and an imbalance in treatments.”
A Freedom of Information request to the Belfast Health and Social Care Trust in November 2024 revealed that within existing resources the current wait time from receipt of referral is eight years.
The situation is even worse in the Southern and Western Trusts, who currently do not hold a waiting list.
Such is demand that those seeking diagnosis within the private sector are struggling to get appointments. For those that do, they are hit with what Ferris, regional ecosystems manager at Ulster Bank, describes as the “double whammy of an ADHD tax”.
Shared care is a formal local agreement that enables GPs to accept responsibility for the safe prescribing and monitoring of specialist medicines.
Some medications, including ADHD medications, are more complicated, falling into the category of ‘Amber list’ drugs which have specific monitoring requirements.
The majority of GPs in Northern Ireland will not accept a shared care agreement with a private company when it involves ADHD medication.
“In practice, this means having to pay for a private GP to write a prescription every month and paying for the medication. This can cost well over £100 every 28 days,” says Ferris, who last year launched The Moment website, a platform to discuss neurodivergence in adulthood.
Six things not to say to someone when they tell you about an adult ADHD or autism diagnosis.https://t.co/CpPCabXV3T
— John Ferris (@themomentblog) October 17, 2024
“Research we carried out for The Moment showed that the price of a 28-day dose of Elvanse 30mg ranged in price from £65 in the cheapest pharmacy in the north to £116 in the most expensive for the same medication.
“That means in a year depending on where you get your medication you’re paying anywhere from £845 to £1508 just for the medication.”
Significantly, McReynolds highlights that the inability to access shared care arrangements, or the removal of agreements by those with ADHD who currently have access to medication, is something he has “never encountered as an MLA with other conditions on the amber list”.
Ferris describes his diagnosis of both ADHD and autism as “the scariest and most liberating” experience of his life.
However, getting the diagnosis has allowed him to “make some sense of what is going on” in his brain.
“For my whole life, people have thought I’m one of the most sarcastic people in the world. But that’s me answering something in a logical way.
“My wife gets so annoyed when she would say things like ‘the green bin goes out tonight’ and I would literally go and sit down and go, ‘thanks for letting me know, I have lived here for 15 years’. In her head, she’s telling me to put the bin out, but why not just ask me to do it.”
While not everyone diagnosed with ADHD decides to use medication to manage their symptoms, Ferris wanted to “give it a try”.
Remembering names, listening more, being more organised and no longer craving sugar are some of the positives he reports a few months on.
“Once upon a time, sitting through a movie felt like an Olympic-level endurance test. The endless multitasking has calmed, and for the first time in years, I can just… watch,” he says.
Over the past 10 years, Ferris has provided mentoring to numerous business start-ups and is passionate about helping neurodiverse entrepreneurs and employees succeed, as well as making the recruitment process more inclusive.
“Job interviews are complete nonsense. They remind me of school, where you do an exam to see how good you are at regurgitating what someone’s told you.
“Unless your job is about being questioned under pressure, why is that the standard interview process?
“Most organizations today are struggling to get the staff they need. There’s lots of amazing people out there who think differently and offer so much, but aren’t applying because of the process.”
Ferris suggests remote online interviews, video submissions rather than CVs and questions being provided in advance of an interview.
“Everybody, whether they have ADHD or not, should be given the chance to partake in the process that suits them best.”
He acknowledged that there still exists a stigma about the hidden disability of ADHD that makes people not want to talk about their diagnosis publicly.
While there is no script on how to respond to a friend or colleague when they tell you they have the condition, Ferris warns there are definitely wrong ways to do it.
This includes saying “I know how you feel” or “we are all a bit on the spectrum” and definitely not “I’m sorry to hear that”.
“Those are five words I didn’t think I’d hear from a grown adult: you don’t need to be sorry for me. I am still the same person I’ve always been. I am just starting to understand bits of myself better.”
I am still the same person I’ve always been. I am just starting to understand bits of myself better
— John Ferris
While at the start he used The Moment blog as “personal therapy” to write about his own situation, the site has evolved with many others voicing their experiences.
“There are so many misconceptions out there and it’s important for more voices to help chip away at the ridiculous stereotypes that still exist within society today, such as ADHD being something that only affects young boys.”
He also wanted The Moment to “shine a spotlight on the barriers put in place by society and by a broken healthcare system”.
“There’s a perception for many trying to get help with ADHD that they are at the bottom of the priority list. Healthcare shouldn’t be a choice between who we help. No one should have to wait eight years for help whether that’s for ADHD or a surgery.
“The human cost of this wait in terms of mental health, lost opportunities and even lives, makes this much more than just a waiting list issue. It’s a fundamental denial of the right to adequate healthcare.”
In April 2024, McReynolds submitted a petition to the NI Assembly calling on the Department of Health to implement an ADHD strategy which would give people access to a diagnosis and medication, treatments, and support.
Last summer a briefing paper, Understanding ADHD Care, was created for the Northern Ireland Assembly, which exposed the north’s deep-rooted failures in addressing ADHD.
While progress has been slow, McReynolds reports that Health Minister Mike Nesbitt has “submitted a business case to task a researcher to conduct a paper on what an ADHD service would look like here and how much it could likely cost.”
Work on this is now underway and “would likely be finished by the end of this financial year”
Recently elected as the Chair of the All-Party Group on ADHD, McReynolds says he “will be making full use of my role to make sure people living with the condition, and potentially living with it, have access to the care and support they deserve.”
