'Wildly unfair that my husband and I pay £4k a year for ADHD treatment'
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Rebecca and her husband, who also has ADHD, both pay for regular private psychiatric reviews, GP prescriptions and medication Adults with Attention Deficit Hyperactivity Disorder (ADHD) are demanding urgent action over a lack of funded services in Northern Ireland, with some revealing they pay thousands of pounds a year for private treatment.
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Northern Ireland doesn't have a formally commissioned, publicly funded adult ADHD pathway like in other parts of the UK.
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One woman has described the situation as "wildly unfair and inhumane", saying she and her husband spend about £4,000 a year on private treatment and care.
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The Department of Health acknowledges increasing demand but said decisions must be taken in the context of overall affordability.
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Rebecca Bryson owns three businesses, which helps to cover the cost of her ADHD, external treatment and follow up care.
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Her husband, Colum Coyle, also has ADHD, and both pay for regular private psychiatric reviews, prescriptions and medication.
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Their combined costs of staying on treatment are about £4,000 a year. "It's a tonne of money that most people don't have, and I'm in a position where we do have it because I work multiple jobs," she said.
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She said the situation felt "wildly unfair and kind of inhumane".
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"If I had another medical condition like cancer or a broken bone, and I asked for medical treatment, they wouldn't turn me away."
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Bryson said there needed to be a clear route to diagnosis for adults with ADHD in Northern Ireland.
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"You can get a diagnosis as a child, but once you turn 18, you're on your own.
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It's bananas." Northern Ireland: Remains without a formally-commissioned ADHD service.
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Trusts manage referrals within existing resources, leading to long waiting lists. England: A legal right to choose exists in areas within England.
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If a local wait is long, a GP can refer a patient to another NHS-approved provider. Scotland: There is no single commissioned service for ADHD, as local statutory partners have responsibility for planning, designing and delivering services to meet the neurodevelopmental support needs locally, including services commissioned from the third sector where appropriate.
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Wales: ADHD services are commissioned locally by health boards.
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The Welsh government is working through its Neurodiverse Improvement Programme to increase capacity, improve assessment pathways and reduce long waiting lists. Dr Allen McCullough said ADHD diagnoses has become an "evolving picture" Dr Allen McCullough has worked as a GP for 35 years.
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He said he understands the difficulties with those seeking ADHD diagnoses and it has become an "evolving picture".
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"I can refer to an adult ADHD service within my local area, but that's in the full knowledge that there isn't anybody there to receive it," he said. McCullough says some GPs have concerns issuing medication for those looking shared-care arrangements, where a consultant and GP collaborate to manage and prescribe specialist medications.
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"Some of these patients are attending privately, and we don't get any notification of who they're seeing or the qualification of the person who's doing the diagnosis.
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So, I'm not saying it isn't a stand over diagnosis, but if we're not getting the information, we're definitely not going to get involved or cannot get involved.
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"When you prescribe it, you're responsible." 28-year-old Jordan says he struggled to get access to ADHD services here after concerns from family members.
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Jordan Young, 28, said he struggled to get access to ADHD services, which typically include assessments, medication and follow-ups.
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"I tried so many different places.
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I was basically told that the doors were closed, they weren't taking anyone else on," he said.
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"If it wasn't for my granny, I wouldn't have gone over and gone private to be honest. She put me through her private health insurance."
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Young said more needed to be done to improve access to ADHD services in Northern Ireland. "I want to see where the health minister actually comes to some sort of agreement that he will put a budget [in] for people with ADHD or people that looking to be diagnosed with ADHD and treat it like it is a serious matter."
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Alliance MLA Peter McReynolds said adults with ADHD had been "completely forgotten about" Alliance MLA Peter McReynolds said adults with ADHD had been "completely forgotten about" by the Department of Health.
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He said he had been pushing for a commissioned service since 2024 and had met three health ministers, who he said had taken a similar approach.
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"I think we should be a hell of a lot further [on] in terms of commissioning that service because it would be transformative for the people of Northern Ireland and it would save us money in the longer term as well."
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A Department of Health spokesperson said health trusts "manage referrals within existing resources and demand continues to exceed available capacity, resulting in long waiting times which has led to people seeking a private diagnosis".
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"Significant work has been undertaken to better understand the level of need for ADHD services," he said.
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"Any future commissioning decisions must be taken in the context of overall affordability, at a time when we face significant funding constraints across health and social care."
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Adult ADHD diagnosis 'tough but totally made sense' Clinics in GB supply almost half of NI's private ADHD drugs 'Dire' warning for adults waiting for ADHD diagnosis
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