Co Down man unable to get adult ADHD diagnosis in Northern Ireland - even privately

Stephen Loftus, his wife Claire, and their children
Stephen Loftus, his wife Claire, and their children -Credit:Submitted

A man from Northern Ireland with suspected ADHD is unable to get a diagnosis for the condition, even privately, due to high costs and lack of resources.

Stephen Loftus, from the Comber area, first spotted traits of ADHD in his behaviour when a speech therapist suspected his daughter, Poppy, may have the condition. As the family began to research further, they found in many cases it can be genetic.

Around two and a half years ago Poppy, who is now eight-years-old, joined the waiting list to be diagnosed and received her diagnosis in December 2023. At the same time, Stephen began to look into getting formally diagnosed himself, but has not been able to do so yet.

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It comes as there are no regionally commissioned services for adult ADHD in Northern Ireland, and therefore no waiting lists within Health and Social Care Trusts here. Alliance MLA Peter McReynolds has launched a petition to bring commissioned services to Northern Ireland, describing the current situation as "dire."

ADHD, or attention deficit hyperactivity disorder, is a developmental disorder associated with an ongoing pattern of inattention, hyperactivity, and/or impulsivity. The symptoms can interfere significantly with an individual's daily activities and relationships.

Speaking to Belfast Live, Stephen's wife, Claire, said his not being able to be formally diagnosed has been frustrating. She said: "Stephen has been on the "waiting list" for the last couple of years but it hasn't got anywhere. I suppose we've seen the big difference medication has made for Poppy's life and Stephen is keen to have that himself, it's been quite frustrating.

"There isn't even a proper waiting list. You could pay to see a psychologist and get a diagnosis, but they aren't able to prescribe you medication, so you need to see somebody who has the ability to prescribe.

"There's only certain people who can do that in Northern Ireland, and all of them have closed their books for the year, so you can't even pay to go privately now to get the assessment. Even if you are able to go private, there isn't an official shared care agreement in place between the private sector and the NHS.

Stephen Loftus, his wife Claire, and their children
Stephen Loftus, his wife Claire, and their children -Credit:Submitted

"So it's up to each individual GP practice, and most aren't accepting the referral or diagnosis. This means they aren't prescribing the medication, which means if you paid for a private diagnosis, you would have to pay hundreds for private prescriptions on top of that."

As for the signs they spotted that indicate Stephen may have ADHD, Claire said: "He's constantly on the go and always thinking about things, he finds it quite difficult to relax. He's always got a leg jiggling or he's always fidgeting.

"He's a chef and it's quite an intense high pressure working environment. He loves going in to solve a problem in a restaurant and getting it all running like clockwork, but then he can often lose a bit of interest after the challenge is gone."

Claire said this is the first time she has seen her husband feel "hopeless" when dealing with a problem, and that the family are looking into all options. However, the money needed to go somewhere like Manchester or Glasgow for a private consultation, then to return on a regular basis for prescriptions, is not feasible.

She said: "Stephen has always been really motivated, he's a problem solver. But this is the first time we've had a problem where we can't find a solution, this is the first time I've seen him feel a bit hopeless.

"We could try to save the money for a private diagnosis, but it would be thousands, and he would have to go back every six months and have to pay for private prescriptions. It would rack up to be thousands and thousands of pounds, which is just prohibitive."

Claire is calling on the Department of Health to commission adult ADHD services, indicating it could be transformative for many people in Northern Ireland, with the region falling behind the rest of the UK. She added: "There's a lack of support overall for this and it needs to be addressed as soon as possible."

A spokesperson for the Department of Health said: "Provision of service for ADHD assessment and diagnosis has grown across Trusts in recent years in response to population demand and available expertise within Health & Social Care teams. While a level of provision is available for ADHD referrals, there are currently no specifically commissioned services.

"The Health and Social Care Trusts are committed to working closely and collaboratively with the Department to develop innovative, cost effective, co-produced, quality, and evidenced-based services that can meet the needs of patients with ADHD. This work would include the development of clinical pathways.

"Any decision to commission Adult ADHD services in the future will be based on an assessment of the level of demand for services, and in the context of future budget availability.

"Officials from the Department are considering the future direction of travel for the commissioning of Adult ADHD services and how best to progress the issue, in discussion with relevant stakeholders. Subject to future budget availability, potential next steps include the commissioning of research/analysis of adult ADHD demand to inform options for future commissioning strategies, as well as a regional workshop to explore potential ways forward."

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