‘When you are dealing with a mental health issue in the home, you drop out of society in some ways’

In June of last year, a number of parents whose children had been referred to the Child and Adolescent Mental Health Service (Camhs) took part in a workshop which informed the report published in late July by the Mental Health Commission. Dr Susan Finnerty’s final report concluded that she could not currently provide an assurance to all parents in Ireland that their children had access to a safe, effective and evidence-based mental health service. The report contained 49 recommendations for change.

For one mother, Hannah*, the experience of contributing to that report was eye-opening. “We had a really bad experience with Camhs. But it was only then I realised that our bad experience was actually the normal experience for many others.” Hannah had scarcely heard of Camhs until her daughter received a referral. She speaks of that period as a kind of a battle. “When you are dealing with a mental health issue in the home, it is very isolating. You are stuck at home physically, and emotionally, you kind of drop out of society in some ways. My child wasn’t able to go to school. We weren’t seeing people. And what got me through that period was a couple of Facebook groups I joined and realising that there are kids up and down the country who cannot go to school, who are suffering from anxiety or depression. I think knowing you are not the only one in that situation is reassuring – not that you would wish it on anyone else.”

This May, she decided to set up an official families’ support group to agitate for reform. Within a couple of months 270 members had signed up. They are scattered throughout the country and have shared stories through online meetings. That communication at least brings the comfort of feeling less alone. Some 11,000 children are currently waiting for primary care appointments – the referral service before Camhs. There are 4,500 children on the waiting list for Camhs appointments. Parents and those who have experienced Camhs uniformly speak of a service that is chronically under-resourced and a system that is baffling and frustrating to navigate or understand. Within those flawed parameters, the vast majority encountered exceptional individuals navigating their way through a hopeless backlog.

“There are wonderful people out there,” Hannah says.

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“And we are not trying to take away from the positive experiences. But it is just the negative ones are so widespread. And dangerous. You don’t get accepted to Camhs unless your child has a serious mental health issue. But you often don’t get seen by Camhs until it becomes an emergency issue. So, it is this allowing your child to deteriorate until you get the help, I think, is what most families find so heartbreaking. It is the opposite of early intervention what is being offered.”

Suicidal ideation

Sophie* took her 14-year-old son to their family doctor in early 2021. He’d begun to go through a difficult time and was suffering from low moods. The doctor wrote a referral letter to Camhs. The family received a letter in reply to say their child didn’t meet the criteria.

“This is a very common letter,” Sophie says.

“You are thinking you have gone to the doctor and poured your heart out and you have been referred to – as they say – the only game in town and then it feels like you are just dismissed.”

By Halloween, his condition had deteriorated into a cycle of anxiety and suicidal ideation. He got a further referral to Camhs that December. He was seen in mid-February. In June, Sophie’s son spoke of taking his life and was brought from his home to hospital by ambulance.

“And that went smoothly because it was late at night and maybe within an hour he saw a psychiatrist in the hospital. But there was no real follow-up after that with Camhs. You are just released.”

Through this time, normal life was effectively suspended for the family. Anytime their son went out, Sophie and her partner fretted. If he failed to answer his phone, even for a half hour, those minutes became torturous. It took another admittance to hospital and what she considered to be a disastrous consultation with a psychiatrist before the family doctor wrote what Sophie terms “a strongly worded letter” outlining the gravity of her son’s disorders. He was finally assessed and put on medication in December. “Which has helped enormously. But that took from September 2021. It was a full year during which his condition deteriorated.”

Last month, Dr Amanda Burke was appointed as Ireland’s first clinical lead for youth mental health. She has practised child psychiatry for 30 years, 12 of those as clinical director for Galway-Roscommon-Mayo, and fully acknowledges the stresses families such as Sophie’s have endured.

“I am a passionate child psychiatrist but I would be the first to hold my hand up and say there are challenges within the system. They are multifactorial and systemic. If it was simple we’d have sorted it. But anybody that has a child with mental health difficulties if they have had a poor experience: that is not acceptable. So I appreciate you acknowledging the staff work really hard and a lot of people get good outcomes. But we do have to look at the bad experiences and we have to learn from them. One of the big challenges is the whole navigation of the system. By and large, parents are really reasonable when you explain it to them. But the lack of consistency causes challenges.”

Camhs-ID

Earlier this year, Jennifer* was told that her daughter would be released from Camhs into the care of Camhs-ID, which was launched last September as a specialised service for children with anything above a mild intellectual disability. “On paper, it sounds amazing,” Jennifer says. But there was a snag. From information she obtained from the HSE, there were 16 regions that were designated for Camhs-ID teams but only four of those were operational. Jennifer lived in one of the areas that had none. “And you can’t be referred out of your catchment area.” The therapist and doctor who discharged her daughter were, she says, upset. They made phone calls to see if they could find other pathways for referrals. “They couldn’t find any names of where we could go.”

On the night before we spoke, Jennifer’s daughter had been up until after 2am. She doesn’t sleep well. She was diagnosed with autism and with attention-deficit hyperactivity disorder (ADHD) and an intellectual disability. She had come through an aggressive brain tumour as a baby. She is prone to harming herself. Jennifer tried to get a sleep consultant but says she was told that would not be possible until her daughter’s anxiety was under control.

“People ask me what I want from the service. I don’t know. I am not qualified to say what my daughter needs. And that is why I turned to them. My daughter is 10. I am not waiting for eight years. We have had to swallow enough with waiting lists. And that’s fine: I will wait. But I am not sitting for eight years with nothing being done.”

Listening to that story gave Dr Burke what she described as “a pain in my stomach”.

“Thinking that someone wanted to hold on to a child and treat them and couldn’t. Camhs-ID is a relatively new speciality and is one of the least resourced. There is a real challenge in getting the consultants. We should have 16 teams. We have five partial teams. What we need to do is provide a consultation model in the interim. That might mean bringing in the telehealth solution, which is not ideal. But it is better than nothing and it will give a reassurance to the teams treating the child. We need then a consistency approach across the country because the postcode lottery – and it is that – is very difficult for parents.”

Dr Burke points out that while it may not seem like much, the number of children under the care of Camhs-ID has increased from 14 per cent to 21 per cent. It’s a modest improvement – but it is progress. Her ambition – and she speaks with energy and purpose – is to overhaul a system that is no longer fit for purpose. The short rationale of what ‘happened’ to Camhs originates, she says in the legal change of a child’s age from 16 to 18.

“I suppose where the challenges came for Camhs was: it was originally set up as child guidance up to the age of 16. When the age of a child was increased to 18, Camhs took on that age group and the vast amount of morbidity occurs at 17 and 18 and it wasn’t resourced properly then. And all of a sudden Camhs teams had to switch from early intervention into the higher-level psychosis, self-harm, eating disorders and suicidal ideation. To answer your question: is there a place where this works really well? Actually, probably not. Internationally, recruitment for child and adolescent psychiatrists is really difficult. There are entire states in America that don’t have any. But telepshcyiatry is mainstream there. In Australia they have been using it for decades. So if I had to look at models, I would probably look at Australia and New Zealand. And I want to get the youth voice at the table. We need to hear what they want. I would like to see drop-in services where young people in distress can talk to someone now. Not get an appointment in three months. That they could go in and then be triaged there ... sometimes all they need is an adult or even a peer outside their home environment to talk to and settle things down. Sometimes it is as simple as that.”

Autism

One area in which Camhs has come under heavy criticism is in its treatment of autism. Andrea* is among the parents who felt that her child’s disorders were treated as an adjunct to her diagnosis for autism. She believes there is no question that her child has an anxiety disorder. “And we argued with the psychiatrist and at some points she seemed convinced but then it was as if she remembered she had to get rid of this child and would say: ‘We have to view this through the lens of autism.’”

Andrea feels as though her family is caught in an exhausting holding pattern. The autism diagnosis came through Camhs. “And then they said: ‘Well, you’ll have to manage the anxiety.’ You get so tired because you have to fight for everything.” She has had no option but to give up work outside the home since her child’s diagnosis. An eating disorder means “normal” family meals are “complicated” and something as simple as sitting down to watch television together a rarity. A referral to Enable Ireland brought about a series of helpful consultations but the eating disorder means a further likely referral to Camhs.

“They cut us off back in January. But we will possibly have to go back, if they will accept us.”

Hallucinations

In a separate case, K*, now aged 18, was referred to Camhs for an eating disorder, hallucinations and self-harming. Shortly after that, they were assessed for autism. “That is where everything sort of fell apart. Every single symptom seemed to revolve around my autism or was brushed off because of that.”

That included the attitude towards K when they came out as transgender. “The psychiatrist took my mum aside and told her not to call me by my preferred name or pronoun or not to encourage me because I was too autistic to know whether I was trans or not!”

During a different consultation, K. asked to be assessed for borderline personality disorder, on the grounds that their symptoms seemed to point towards that. “And I was verbally laughed at. I am not including hyperbole here.”

They spent several weeks in a psychiatric institution and later had a “situation” which saw them admitted to hospital after arriving by ambulance.

“I was put into an observation room and the only way I was getting out was if Camhs assessed me. They called three days later to say they were refusing to see me because I had a full assessment already and wasn’t mentally ill. Even though I was sent there for hallucinations and an eating disorder. If I sound a little aggressive here, it’s because I’m angry at Camhs. Then a nurse got on to them and said: we legally can’t let this person go unless you see them.”

K is now in adult services and is currently under assessment for borderline personality disorder. The staff use their preferred name. Their eating disorder has almost entirely resolved and the hallucinations are not as prevalent.

“I think autistic people are not taken seriously by the system,” they said.

“I believe there would have been a greater hope for me if I wasn’t autistic. I used to be a very happy child. It was a specific traumatic experience that brought on the eating disorder. I think the hallucinations are attributable to the disorder I am being assessed for. My family is also angry. My mum defended Camhs before everything came to light and she recognises now how harmful it was to me. She would try to explain it to me.”

The Families for Reform of Camhs group has called on the Government to implement 10 key reforms, including an increase in the number of Camhs-ID teams, the end of what they term the “systemic discrimination” against autistic children in the provision of mental health services, an overhaul of administrative and staff shortages and an “increase in the availability of supports offered to promote a child-centred approach to recovery (including ending the practice of discharging children whose families decide not to use medication and delivering on the commitment to provide out-of-hours mental health services)”.

So far they have received an acknowledgment from Minister of State for Mental Health Mary Butler. Their petition has reached 2,000 signatures, a figure they expect to increase exponentially in coming weeks.

“The last report, in 2017, highlighted similarly serious concerns but they were not acted upon,” says Hannah.

She adds: “Ninety-eight per cent of our members don’t think that our Government will bring in any reform or address the shortcomings in Camhs. There is an absolute lack of trust.”

This is the starting point for Dr Amanda Burke. Her vision for Camhs is of a much more nimble and supple service. It will take time. A key difficulty is in the recruitment of professionals in psychiatry and psychology.

“The universities weren’t producing them because we weren’t employing them. I’ll be honest. Camhs is tough. It is hard listening to a lot of human tragedy and complexity. And sometimes there are jobs that are seen to be ... easier. In my own area five years ago, I had no waiting lists. And I really want to get back to a no-waiting-list policy.”

A future Camhs will, she contends, hold drop-in clinics where adolescents in distress can access instantly rather than wait for a three-month formal appointment. It cannot happen overnight and repairing that lost trust is a priority. In the meantime, families of those whose children have navigated Camhs in recent years will continue to turn to one another for answers.

*Some names have been changed or surnames withheld as participants or their children are still under the care of Camhs.