Health

‘The psychiatrist didn’t believe in ADHD’: People with condition struggle with the health system

For some with the neurodevelopmental condition, accessing medication to treat it is still the ‘luck of the draw’

People with ADHD may find it harder to focus, complete tasks, regulate emotions, be on time and control impulsive behaviour than those without it. Illustration: iStock

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Brianna Parkins
Mon Jun 17 2024 - 06:00

Despite spending thousands of euro and enduring long waits for diagnoses, some Irish people with ADHD (attention deficit hyperactivity disorder) claim accessing medication to treat it is still the “luck of the draw”.

Left untreated, the neurodevelopmental condition can impact on an array of different day-to-day functions.

People with ADHD may find it harder to focus, complete tasks, regulate emotions, be on time and control impulsive behaviour than those without it, sometimes making it difficult to maintain employment, relationships and self-esteem.

Although not required by all, stimulant medications such as lisdexamfetamine and methylphenidate often form a key part of the treatment plan to manage the condition.

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However, supervision and regular follow-up appointments are required due to the medications’ potential side effects.

Although some psychologists can diagnose people with ADHD, under current regulations medication to treat it can only be prescribed only by a psychiatrist or a GP.

But just because they can doesn’t mean they will, as Clodagh McGrath found out after her 2018 diagnosis.

[ ‘Living with undiagnosed ADHD, you have this sense that you don’t quite fit’ ]

The finance professional was on the waiting list at St John of Gods for an ADHD assessment for two years, having rejected previous incorrect diagnoses of anxiety and depression.

“I wasn’t anxious or sad, and that’s why I struggled with function ... it’s the other way around,” she says.

“I would feel embarrassed and ashamed when I struggled with really basic organisational tasks.”

After she finally secured an assessment, McGrath took the psychologist’s report documenting her ADHD diagnosis to a psychiatrist hoping to be prescribed the appropriate drugs.

“The appointment was €150 and she pretty much just said, ‘Oh, I’m not familiar with this medication and I’m not comfortable prescribing it’,” McGrath says.

“It’s so frustrating that I couldn’t find that out before.”

She then tried another psychiatrist who she says told her they “didn’t believe in ADHD”.

She eventually found a GP, through a contact, who accepted her diagnosis and was willing to prescribe her medication.

“It was completely counterintuitive because I would have expected a psychiatrist would feel more comfortable, because that’s the area they deal in,” she says.

McGrath says finding a GP willing to prescribe ADHD medication after her formal diagnosis was the “luck of the draw”, and a situation that Ken Kilbride, CEO of ADHD Ireland, says is rare.

“Very few GPs out there will take over the prescribing of ADHD medication,” he says.

[ ‘A lot of young people with ADHD feel misunderstood by family and in school’ ]

“There’s about 4,000 GPs out there in Ireland and they might say they’re already busy with lots of things and ADHD is additional work.

“We push back on that a little bit by saying ADHD is treatable It’s hereditary. It’s part of the human genome, so if we treat colds and coughs, you should be able to treat ADHD.”

Kilbride says a recent webinar for GPs on ADHD “had over 1,000″ attendees and he feels there is a growing “awareness and interest” within the medical community.

He says he’s aware of unreleased figures suggesting “20 to 30 per cent of all new referrals into the mental health service or the HSE are people looking for an ADHD assessment”.

“That trickles down into the system ... so GPs are certainly seeing more of it. But they’ve never got the training on it.”

Kilbride has suggested a dual approach between psychiatrists and GPs may help streamline the process for patients, plus address the shortages and strains on both professions.

“If they [GPs] can get the prescription coming from a consultant psychiatrist and the person is then stabilised on the medication under the psychiatrist, they can take over the prescription.”

Dr Aoife O’Sullivan, the HSE/ICGP clinical lead for mental health, says that since 2020 there has been a significant increase in the number of adults presenting with symptoms of ADHD in general practice in Ireland, looking for ADHD assessment, diagnosis and treatment.

“This mirrors international trends. ADHD is a common neurodevelopmental condition, affecting approximately 5 per cent of the population. The symptoms can be identified in childhood, and often persist into adulthood,” she says.

“The increase in the number of adults presenting with symptoms has put a lot of pressure on both primary and secondary care services; currently there is no resourcing for ADHD care at primary level, while specialist services are not resourced to cope with the numbers presenting. In order to diagnose and treat those with ADHD, both GPs and psychiatrists dealing with adults require further training.

“This need has been recognised by the HSE, and by the Irish College of GPs. The HSE is engaging with numerous stakeholders, including the Irish College of GPs, to develop an appropriately resourced model of care to address these issues. The Irish College of GPs will work to restructure post-graduate training of GPs around ADHD treatment, following the development of this appropriately resourced model of care.”

Over eight years Conor, who did not wish to be named because he wanted to keep his diagnoses from his employer, has seen multiple GPs, was assessed as having ADHD by a psychologist and was under the care of an ADHD specialist psychiatrist.

Conor says the first GP he went to told him he had been placed on a public waiting list for adult ADHD assessment but “he never heard from him again”.

Hoping to expedite the process, he sought assessments from both private psychiatrists and psychologists in different locations. At 26, he was diagnosed by a psychologist after a three-hour session of assessments, including an IQ test and an interview with a family member.

“I said all right, well, what’s the next stage? And he’s like well, there is nothing, that’s all I do,” he said.

“He said you go back to your school and you tell them you have ADHD, and you give them this report – but I’m not in school. This is no use to me at all and this cost €700.”

Conor then found a private company offering online ADHD assessments by psychiatrists in the hope of gaining access to treatment.

He was placed under the care of a psychiatrist who accepted his diagnosis and started him on a low dose of Ritalin after a series of blood tests and other general medical check-ups through a GP.

However, he found the medication made him “moody” and it was hard to get to sleep.

He tried to make an appointment to see the psychiatrist again but had to wait a few weeks. He was prescribed a different medication but had to redo the blood tests and GP check-ups.

However, the side effects remained but he found it difficult to adjust the dose.

“Every time I needed an appointment, or my medication was running low … the next appointment would be in like three or four months, at that stage,” he says.

“Then it becomes a logistical nightmare because you have to get the bloods and everything done, but then your appointment could be three or four months away.”

After guessing it has cost him the guts of “€3,000 to €4,000″ including the initial assessments, GP appointments, blood tests, pharmacy costs and multiple €200 follow-up appointments to get regular access to medication, he has given up.

“I’ve just been living basically with ADHD since then because to get actual medical care for this is, I feel, almost impossible,” he says.

Prof Aisling Mulligan, chair of the Special Interest Group in ADHD at the College of Psychiatrists of Ireland, says a shortage of psychiatrists willing or able to treat ADHD could be down to now outdated attitudes.

“It was believed previously that many young people ‘grew out’ of ADHD and didn’t need services as adults – but we now know from further medical research that this is not the case,” she says.

“Hence ADHD services for adults are now being developed in Ireland.”

Quoting 2022 and 2019 research, Prof Mulligan says: “The economic costs of poorly managed ADHD are substantial with estimates of societal costs across the lifespan ranging from €14,000 to €20,000 per person per year.”

“The use of medication to treat ADHD can reduce some of these risks,” says Prof Mulligan, noting medicated patients require regular monitoring of their blood pressure, heart rate, height and weight.

[ ‘Lots of children with ADHD are incredibly creative, but they get perceived as very bold’ ]

Paddy Fagan, a cafe owner, says his GP provided a lifeline when his psychiatrist, who had diagnosed his ADHD, stopped taking his calls.

“What I always found really tough was just like, kind of, you know, scattered thoughts. Starting one task, do 10 per cent of it, walk into a room, forgetting what I was doing and then just having 10 per cent completed tasks at the end of the day,” he says.

“And the Ritalin just really kind of helped me sit down and just go through one task to completion.”

The psychiatrist suggested Fagan change to a different, longer-acting medication which Fagan says helped productivity but “deadened emotions” and left him “feeling empty”.

However, he says he found it hard to get back in touch with his prescribing consultant or have his concerns heard.

“It felt just that kind of typical Irish thing of having to hassle someone until they felt like they couldn’t get away with not doing it any more, you know?

“So, like, I need an appointment. I need an appointment. You know, when can I get an appointment? I sent you an email eight days ago. I haven’t heard anything back. I really need to get my medication, or I really need to discuss this.

“And just not hearing anything until it was an absolute emergency, and there were a few times where I didn’t hear anything anyway, so I just went back to my GP.”

Fagan sympathises with overloaded mental health providers in Ireland and a system that seems to be in a perpetual struggle to cope with demands, but says it means “we’re not caring for people as we should be”.

“These are serious issues, and we’re not taking them seriously enough in this country.”

Weekendadhd