‘When I was 16 everything was fine, then suddenly it wasn’t’

No Child 2020: ‘No child should feel isolated because of their mental health struggles’

Kate Moore: ‘No child should have to feel alone in the face of mental illness’. Photograph: Domnick Walsh

Kate Moore: ‘No child should have to feel alone in the face of mental illness’. Photograph: Domnick Walsh

 

No Child 2020 is an editorial initiative by The Irish Times. Its purpose is to give voice to children, to explore the problems facing children in Ireland today and to offer solutions that would make this a better country to be a child. For more, see irishtimes.com/nochild2020

Here, 19-year-old Kate Moore writes about her five years of mental health challenges and how she and those around her coped.

I sat quietly in the small HSE room, answering questions from the man with the kind eyes.

Yes, I was exercising. Yes, I’d been on medication before. No, I didn’t think this was just a normal teenage mood. Yes, I was sure.

Ireland as a nation has issues with mental health. According to the Royal College of Surgeons in Ireland, one in six people aged 11-13 experience mental health problems, the most common of these being anxiety and depression. One in 10,000 Irish 15 to 19-year-olds will die by suicide.

These are harrowing statistics. Although there has been increased conversation around youth mental health in recent years, there is little conversation around support in our public healthcare system and education facilities for such issues.

When a child or young person is suddenly experiencing difficulties, it can be hard for them to express what’s going on. It is vital that both they and their parents or guardians receive the support from their school and from any relevant medical services

When you are that child, you often have no idea how to ask for what you need. In children already experiencing socio-economic disadvantage in the form of poverty or housing difficulties, statistics of mental illness are even higher.

There is a large and frightening gap of understanding between the systems in place and those that are struggling. In an ideal world we’d be able to fill that gap.

I experienced severe anxiety problems from the ages of 13 to 18, and when I was 16 I had an anxiety-induced breakdown of sorts. It was as if everything was fine, and then suddenly, it wasn’t.

‘Walls were closing in’

I was walking down the corridor at school when I was hit with such a wave of anxiety that it felt like the walls were closing in, the ground was moving underneath me and I was suddenly walking in a dream. I’d had plenty of anxious periods and panic attacks before, but nothing to this severity.

My secondary school and my parents struggled with the sudden and debilitating anxiety I was experiencing. Initially, I was not even aware that what I was feeling was treatable, and when treatment began it took time to get the medication and therapy right.

I found no privacy in school, and felt almost completely alone. Had I or those around me had more education about mental illness or the impacts of severe stress, the next steps to take would have been clearer.

When the statistics of youth mental illness are so high, it is particularly important that help is available regardless of background. Although I lacked a certain amount of support, the level of intrinsic privilege I experienced in the first place undoubtedly helped me with recovery.

I had access to GP treatment, anti-depressants and private counselling. I had the privilege to not have to tap into a system where I might be on a waiting list for months, years, and even then not see the same psychologist twice. Years, when even the next fortnight seemed a near impossibility. I had financial support, was able-bodied, and in full-time education.

For those who don’t have access to such privileges, recovery is even more difficult.

Two years later, in the little HSE room, I found out that the short-term medication I was somewhat relying on wasn’t effective over a long period of time, but there weren’t any other options available. Due to the number of patients, it was a while before I could get a follow-up consultation. I didn’t feel understood, and the process felt rushed.

Recovery is entirely possible, but without the right supports or time it’s a locked door.

Gap of understanding

This needs to be changed. No child should have to feel left in the dark by the health system in this country or by our schools. Adolescence is already such a difficult time and to add mental illness on top of that can topple the tower. The gap of understanding and of empathy can make all the difference. We need to look after children experiencing mental health difficulties, because they are unsure of how to look after themselves. More than anything, we need to listen to them. Recognition of the struggle can mean more to someone in pain than might initially be realised.

Education for schools and families on how to deal with mental illness in younger people is hugely important.

When children who are vulnerable are exposed to mental illness, a pre-set plan can make all the difference. It’s vital that as a country we look after our children, especially the children who might not otherwise access help and treatment, those dealing with poverty, poor housing and other socio-economic factors.

I left school for almost three months during my Leaving Cert year, to study at home. Over many months of work, I started making progress and eventually returned to school to sit my exams, then went on to college.

If I and those around me had had more education in how to deal with issues such as those I was facing, it would have made the process a lot easier.

No child should feel isolated because of their mental health and any ensuing struggles. The number of young people who struggle with mental health is a lot larger than is acknowledged, and it’s vital that it is paid as much attention as physical health in our schools and our hospitals.

No child should have to feel helpless, confused, or afraid because of their brain. It’s vital that no matter how ill or what kind of life the child is living, we look after them.

No child should have to feel alone in the face of mental illness.

The experts respond: Analysis by Sheila Wayman

The statistics that lie behind experiences like Kate’s are stark. Thousands of children are facing mental health problems, and many cannot be treated adequately or fast enough.

At present, 2,606 children around the country are on a waiting list to be seen by the Child and Adolescent Mental Health Services (CAMHS) and almost one in eight has been in that queue for at least a year.

Secondly, there is a 40 per cent shortfall in clinical staff within CAMHS nationally, against the level recommended by a 13-year-old mental health blueprint, A Vision for Change. In the worst affected area of the south-east, the number of clinical staff isn’t even half the target.

Behind these latest official figures from the Health Service Executive lies not only deep distress among many affected children and their families but also huge pressure on the professionals who are trying to care for them. The so-called “post code lottery” is also at play, with services faring better in some parts of the country than others.

The issue of mental health in children and adolescents is complex, and while all the woes of the sector are often associated in the public mind with CAMHS, the reality is that the problems within these under-resourced specialist services are exacerbated by wider failures within the health system.

Of course, where the buck stops is not of any relevance to the young people who need the right treatment from the right professional at the right time, to prevent their lives being irreparably derailed by a mental health illness.

Three teenage boys who have been crippled by overwhelming anxiety for at least six months come to the mind of one frustrated Dublin GP, Dr Fiona Moynihan, as she talks about how the adolescent mental health services have “massively deteriorated” in her area. Having been in practice in Finglas for the past 25 years, she says: “The last two to three years is the worst I have ever seen, it’s appalling.”

Generalised anxiety

From her perspective, unless the cases she is referring involve attention deficit hyperactivity disorder (ADHD) or a suicide attempt, “there is no service, everybody else is on a waiting list”.

Working in an area of high socio-economic deprivation, she has no doubt that generalised anxiety is on the rise. Homelessness, addiction and gang warfare are all having an impact on young patients’ mental health. She sees children living in hubs for homeless families who have acute anxiety, are not sleeping and are suffering social phobias, yet “CAMHS want nothing to do with them – they are not bad enough”.

As a secondary service for the treatment of conditions such as moderate to severe depression, anxiety, eating disorders and self-harm, the psychiatric-led, multi-disciplinary CAMHS teams argue that they are getting referrals that should be dealt with by other services, such as psychologists in primary care. But Moynihan doesn’t regard the 18-month waiting list for a psychologist in her area as any sort of service at all.

She is sad to say that if a family has “got any bit of money”, she will try to get them to bring their child to a private psychologist. But in her catchment area, that’s out of the question for most.

The lack of resources in the tiers of services that are, in theory, available to children is one of the reasons CAMHS has very long waiting lists, says Dr Maeve Doyle, director of communications and public education with the College of Psychiatrists of Ireland and consultant child and adolescent psychiatrist with Cavan/Monaghan CAMHS.

“We are supposed to be dealing with the two per cent of children who have very severe mood disorder, depression, psychotic disorder or eating disorder; we are not supposed to be dealing with milder anxiety that could be dealt with by primary care psychology; we’re not meant to be dealing with somebody who has a child with a developmental delay, that should be going to primary care speech and language and occupational therapy.”

But she too is familiar with waiting lists of up to two years for primary care psychology. Youngsters with milder anxiety problems are either resting on these lists or the GPs have got fed up and referred them to CAMHS, she says. “By the time they had been sitting on a waiting list for 18 months anyway, their anxiety would have become moderate to severe.”

The barriers to effective work by child and adolescent psychiatrists in the community are, in Doyle’s view, “resources, being valued as a professional and being permitted a voice in the management and direction of the services”.

Full implementation of A Vision for Change would go a long way to improving the service but there also needs to be greater recognition of its preventative health value. With one in four of the population aged under 18, child and adolescent health services should be getting at least 25 per cent of the €1 billion mental health budget for 2019, she argues, rather than the roughly 10 per cent currently spent on this age group.

Doyle is also critical of the lack of consultation by management with clinicians about training and development of services in response to the latest waves of need among patients.

A spokeswoman for HSE mental health services acknowledges there are “gaps across the board – within CAMHS and at primary level”. A statement says: “Latest data available from April 2019 indicate that 80 per cent of referrals accepted by child and adolescent teams nationally were offered an appointment with 12 weeks, and 65 per cent of urgent referrals to CAMHS were responded to within three working days.”

Implementation of the recommended clinical staffing levels for CAMHS would require investment of an additional €37 million. But, even if these funds were forthcoming, staff recruitment and retention are highly challenging. Internationally, there is a shortage of personnel for what is a highly specialised area, she says.

Meanwhile in Ireland, demand for these services continues to grow, partly due to increased awareness of mental health concerns but also because of demographics. Between 2011 and 2016, there was a 7.7 per cent increase in the 13-17 age group, the segment of the population most likely to need CAMHS.

Initiatives, she adds, have included the recruitment of 120 assistant psychologists and 20 psychologists at primary level, development of digital supports and expansion of mental health services provided by the charity Jigsaw for those aged 12-23 at 13 centres, with plans to open two more.

Under a new model of specialised care for eating disorders, the first two teams started operating in May 2018, serving CAMHS and adults. Recruitment is in process for other teams.

While inpatient treatment is a last resort, there are critical shortages here too. There are currently 74 CAMHS inpatient beds, plus two high-dependency beds, across four inpatient units in Galway, Cork and Dublin. At the end of May, due mainly to staff shortages, only 51 of those beds were operational.

Adult psychiatric centres

Lack of available beds, along with other factors such as geographical considerations and length of stay, are among the reasons given by the HSE for the admission last year of 84 children and adolescents to adult psychiatric centres. During those same 12 months, 203 children and adolescents were admitted to CAMHS inpatient units.

What’s not being counted, says consultant paediatric psychiatrist Dr Kieran Moore, is those with mental health problems who end up on general wards in paediatric hospitals. They are admitted after parents, in desperation, have brought them to the emergency department.

Having worked in CAMHS, he knows how difficult it is to get even a very sick child into an inpatient unit.

“It’s much easier to get access to a bed in hospital where there is a culture if somebody is in distress, you bring them in,” says Moore, who now works at Our Lady’s Children’s Hospital in Crumlin. When he resigned from CAMHS in Wexford last summer after 16 years, he spoke out about how “burnt-out” staff were struggling to provide a service, in conditions that were “untenable” and “unsafe”.

It should be clearer, he says, that CAMHS is for youngsters with mental illness. “You get this deluge of referrals and you are sifting through this huge amount of distress and they are people who do need to be seen but not by you.”

CAMHS teams review referrals every week, to prioritise the “urgent” over the “routine”, says the HSE spokeswoman, “so that young people with high-risk presentations are seen as soon as possible and this is often within three working days”.

Inevitably this means those considered less severe keep getting pushed out on the waiting list, until some deteriorate to the point of becoming “urgent”.

GPs, who are usually the first health professionals to see these distressed children, need more time for their patients, says Dr Brian Osborne, assistant medical director with the Irish College of General Practitioners. But recruitment and retention problems are putting huge pressure on this frontline service too.

In his experience as a GP in Galway city, “when patients are seen by CAMHS they are well managed” but there can be long waiting times – a situation he knows is even more problematic elsewhere. Children are “being bounced from one service to another”.

Osborne also points to the lack of out-of-hours CAMHS coverage and its “remarkable” lack of electronic communication.

On the brighter side, one year after his high-profile resignation, Moore sees some “green shoots” in services. “We can get totally overwhelmed by the awfulness of it all, and it is awful at times, but there are some positives since. There are good things happening,” he stresses – primarily for children and families – “including in Wexford by the way”.

He also believes there is greater understanding and awareness at both departmental and higher HSE level of the complexities and the difficulties.

Of the Minister of State with responsibility for mental health, Jim Daly, Moore says, “in fairness, I think he gets it”. But whether or not he is a politician who can deliver continuing budgetary increases and demand the systemic reforms needed to care for some of the country’s most vulnerable children is another matter.

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