Collateral damage in any health scandal occurs when people are scared off seeking treatment, as can be expected after the revelations of harm caused to children attending South Kerry Child and Adolescent Mental Health Services (Camhs).
There is huge concern among child psychiatrists about the impact on public trust in the use of medication for children with mental illness. Ironically, the revelation of inappropriate prescribing of medication among one group of children could lead to inappropriate non-prescribing of medication for others, due to understandable fears among parents and young patients. Nobody wants their child to turn into a “zombie”, as one affected family reported in accompanying media coverage.
For parents facing opaque referral processes and notoriously long waiting lists, it must be hard now to dispel the fear that getting their child inside the door of Camhs might not be the answer they hoped for after all. While the independent review, led by Dr Sean Maskey, of the treatment of almost 1,300 young people attending South Kerry Camhs over a five-year period found no extreme or catastrophic harm had been caused, hundreds of children received "risky" treatment from one junior doctor and "significant harm" was caused to 46 of them.
For a public generally wary about the idea of medicating young minds, it was immediately a question of: If in Kerry, where else? It reinforced vague suspicions that too many mentally ill children all around the country are being medicated to curb problematic behaviour.
That impression is very far off the mark, according to child psychiatrists who believe that, generally, underprescribing is more of an issue, due to societal concern, systemic weaknesses and conditions remaining undiagnosed. Sceptics might respond that “they would say that, wouldn’t they?” But psychiatrists point to the science and stress the need for understanding of the role of medication in treating mental illness.
Camhs are multidisciplinary teams, covering, in theory at least, psychiatry, psychology, occupational and speech and language therapies, social work and nursing, and dealing with young people on the moderate to severe end of mental illness.
"Medication itself is never the answer. It has to be part of a holistic approach provided by a multidisciplinary team, but it can be a very effective component of the treatment of several psychiatric disorders of childhood," says child psychiatrist Dr Imelda Whyte, who is chair of the faculty of child and adolescent psychiatry at the College of Psychiatrists of Ireland. "The report is welcome, but what you wouldn't want to see happen is that families who are struggling would delay or avoid engaging with Camhs because of that."
In the case of attention deficit hyperactivity disorder (ADHD), the single most common diagnosis of children and teens attending Camhs, parents and doctors talk about the positive, “life-changing” effect medication can have on children.
"The medications used [for ADHD] are among medications with the highest efficacy throughout all of medicine, not just psychiatry," says Dr Kieran Moore, now a consultant child psychiatrist at Children's Health Ireland (CHI@Crumlin). He resigned from Wexford Cahms in 2018, describing it as "untenable and unsafe" and staff were burnt-out.
After years of warnings about systemic failings within Camhs and the broader mental health services, psychiatrists were questioning the Taoiseach’s announcement of a prescribing audit for each of the Camhs teams. The Inspector of Mental Health Services has since been appointed to conduct an independent review of Camhs throughout the State.
As child and adolescent psychiatrist Ian Kelleher, associate professor at University College Dublin's (UCD) school of medicine, wrote in this newspaper earlier this week: "We do not need an audit to know that the teams are not delivering best-practice care. Clinical excellence is not reconcilable with gross underfunding and under-resourcing. That is just basic logic."
'When parents come to a psychiatry service, it's a more difficult experience at a psychological level for most, than going to a medical service.'
Whyte understands why prescribing is getting a lot of attention. However, “I think it is simplistic to suggest that is the main problem or that addressing it would be the main answer.” Rather, she stresses the need for a “constructive” response to rebuild public trust in Cahms, with the 35 recommendations of the Maskey report already pointing a way to achieve this.
“The appropriate funding needs to be provided for the implementation of those. Obviously South Kerry is its own situation but I think the recommendations that have come from there are a very good starting point for Camhs in general.”
Child psychiatrists are used to dealing with a much higher level of public wariness than their paediatric colleagues in other disciplines. Dr Blánaid Gavin, consultant child and adolescent psychiatrist and associate professor at UCD’s school of medicine, understands parents’ heightened concerns.
If a child has a physical illness, parents are likely to recognise symptoms, know they need to contact the GP or go to an emergency department, and they anticipate medical intervention. Whereas with mental illness, it’s harder for parents to understand what is happening, and they are unsure of where to turn as services are so difficult to navigate.
Gavin sees a gap between parents’ expectations and reality, which, she believes, are more closely aligned when seeking other kinds of medical help. As a result, parents then struggle to make sense of what a psychiatrist may be advising for their child.
“When parents come to a psychiatry service, it’s a more difficult experience at a psychological level for most, than going to a medical service. Most people when they are bringing a child, say for their diabetes, epilepsy, asthma, they are not carrying with them questions ‘what did I do to cause this?’ ‘Is it because I shouted at them when I was stressed’ or ‘was it my focus on the way she looked in that dress’.”
“So parents come typically burdened with a layer of guilt and fear of the unknown. You are dealing with an entirely different context then around working towards an understanding. This isn’t about blame, this isn’t about you, it’s about a child here who has a particular illness and we have to work out the best way to treat that. There has to be a high degree of trust there for people to really understand that.”
That’s why she is so concerned about how recent events are likely to undermine confidence.
“A core component of any effective treatment is going to be the trust between the doctor and the child and parent,” she says. Abundant research shows that if trust is negatively impacted, there is an adverse effect on potential therapeutic outcomes.
Stigma, scandals and societal prejudices all erode trust. It would not be uncommon for Gavin to see parents unnerved by a teacher telling them they shouldn’t have agreed to medication for their child.
“If you’re a neurologist prescribing a medicine, it’s highly unlikely the teacher is going to proffer their opinion on whether that’s the appropriate course to go,” she says.
Dr Moore suggests that the “good to talk” approach frequently promoted for mental healthcare is, on its own, as of immediate relevance to somebody with mental illness as lifestyle advice is to somebody in the midst of a heart attack. At that moment, medical intervention comes first and other measures follow.
He doesn’t believe there is a “systemic” problem with overprescribing; rather, “it is likely there is underprescribing. I think the prescription of medication by consultant child and adolescent psychiatrists on the specialist register who have gone through higher training (as opposed to untrained, non-consultant hospital doctors or those not on the specialist register) is often quite low, because the difficulty in accessing ECGs and bloods for example are massive and there is such a societal concern about medical psychiatric drugs.”
'She was completely incapacitated; she was out of school for nearly two years and she was hospitalised'
The national charity ADHD Ireland doesn't advise on medical matters but its chief executive, Ken Kilbride, does want to stress that ADHD medication doesn't turn you into a "zombie" and that those children in South Kerry were being prescribed something else. "From our perspective, that's one of the scary things of the report that has come out."
Research shows that for children with ADHD, about 80 per cent will benefit from appropriate medication as part of what’s called a “multimodal approach”. Yet Kilbride observes strong parental resistance to the idea, which he personally attributes to misinformation on the internet and poor commentary in the media.
“We get lots of calls from parents saying, ‘We’ve waited three years to get into Camhs, they’ve done the assessment, the child has ADHD; they’ve written a prescription; we don’t want to do the medication; they’ve taken the name off the list’.”
Kilbride wants to see a “holistic” review of Camhs, in which the voice of people with ADHD would be heard. If the only consequence of the South Kerry revelations was to be a lower level of prescriptions, “children with ADHD will come away with more problems”.
Stigma: ‘A lot of kids will suffer’
The findings in South Kerry came as no surprise to Paula, whose daughter has attended Camhs. But she would hate to think they would put another parent off agreeing to medication recommended for their child. She has no doubt that without the use of medication, neither her daughter nor son would have an education because their ADHD had meant they were unable to function in school.
Paula (who asked that her real name not be used to protect the privacy of her children) admits she would have been sceptical about medicating a teenager for mental health issues until her daughter began to become very unwell at the age of 14. It took another two years before she was diagnosed with Asperger’s and ADHD.
“She was completely incapacitated; she was out of school for nearly two years and she was hospitalised. So I had no qualms whatsoever about her going on meds.”
It took the trial of three or four different types of medication until they found one that suited her. But, vitally, the treatment enabled her to go back to school and she has now moved on to third-level education.
Around the time Paula’s daughter was diagnosed, problems with her younger son were becoming evident. He was put on medication at the age of nine. “He had been suffering a lot with headaches, lashing out in frustration, and low self-esteem when it came to school work.”
She knew from information talks that medication was the first line of management of ADHD but that other therapies would be used to support it. “I didn’t waste any time starting those before the meds.” They came afterwards.
There have been side effects from the medication, such as headaches, but “I would rather manage the side-effects than take them off it,” Paula says. “They are two bright kids, but the ADHD affects their processing speed in different areas and it had a huge knock-on effect on their self-esteem. The ADHD medication brings their processing speed up to a level where they can function.”
If the still-lingering stigma about mental illness and medicating children and teenagers is exacerbated by these latest revelations, “a lot of kids will suffer”, she adds.