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'I'm going through a lot of scary stuff': 11-year-old boy with psychosis and his parents plead for help

The young boy has struggled to access certain services despite the efforts of his parents and healthcare workers.

By Órla Ryan

CHILDREN WHO EXPERIENCE psychosis are struggling to access vital services, despite repeated efforts by their parents and staff who work in the health system.

The lack of a centralised system for child referrals to different HSE services means children and adolescents with complex needs often struggle to get access to treatment due to confusion over which health team is best placed to intervene.

When a child needs various services provided by different medical teams, they are sometimes referred from one service to another, further delaying their treatment – much to the frustration of the children themselves, their parents and healthcare workers.

In cases where the child is experiencing a serious mental health issue like psychosis, this delay can have a hugely detrimental impact on their overall prognosis and quality of life, as previously reported by The Journal.

  • The Journal and Noteworthy are currently exploring how a lack of access to services is impacting people with psychosis and schizophrenia; read more articles in the Falling Through the Cracks series here.

The parents of one 11-year-old boy with complex health needs find themselves in this very situation.

They have pleaded for intervention, saying they fear he could hurt himself or one of his siblings. He has expressed a desire to take his own life.

Paul* has been diagnosed with ADHD and dyspraxia, and his parents believe he may also be autistic. He wasn’t reaching certain milestones as a toddler so started to receive speech and language therapy and occupational therapy.

His parents say he first experienced symptoms of psychosis – periods where he would lose touch with reality – when he was just eight years old.

Bipolar spectrum 

Paul experiences intense mood swings and doctors have told his parents they believe he has rapid cycling disorder, which is on the bipolar spectrum.

“I’m going through a lot of scary stuff and I just want to be a kid. I want help,” Paul told us.

During an episode, he will typically hallucinate and become incredibly distressed and, at times, violent.

In March, he experienced an intense episode and tried to stab himself. He has previously made other attempts to take his own life, but his parents have been present and intervened. 

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His parents say they have struggled to get access to certain services for Paul and have been referred from one medical team to another while his mental health deteriorates.

At various points over the years, he has been referred to his local Children’s Disability Network Team (CDNT), Child and Adolescent Mental Health Services (CAMHS), Primary Care, and Occupational Therapy (OT).

His parents say they have struggled over the last two years to get access to OT and counselling for their son.

There is a central referral system in place for the various CDNTs around the country. However, a central system for all child referrals to various HSE services does not currently exist.

Work is ongoing to develop a more integrated service delivery model, the HSE said, as part of the establishment of six new health regions.

‘Falling through the cracks’

In a letter written in December 2023, an occupational therapist noted that primary care cannot provide OT for Paul, as requested by the relevant CDNT, because his needs are too “complex”.

Paul’s mother said her son is “falling through the cracks” of the health service. 

Ultimately it comes down to whose funding Paul belongs under, no one wants to take responsibility. So we’re at a point where we have an 11-year-old who tries to [take his own life] on a regular basis.

“At this stage, they are coming to a forest fire with a cup of water. We have lost our son to this – he isn’t the same any more and neither are we.”

The family lives in Dublin and Paul is being treated by Lucena, a child and adolescent mental health service provided by the St John of God network. He is on a number of different medications including antipsychotic tablets.

“Lucena is the only service currently involved with Paul, they’re trying to help him,” his father said.

“But all we get is more medication for him. We’re well aware that medication is going to be an aspect of his life – we’re not against medication – but he needs other services, occupational therapy, counselling.”

The Journal understands that staff at Lucena are developing a care plan and exploring different options so Paul can receive services such as OT. A meeting about this took place last week, but his parents say nothing concrete has been confirmed.

His parents have contacted Tusla and gardaí 

Paul’s parents have previously contacted An Garda Síochána and Tusla, the Child and Family Agency, over fears for the safety of their other children. Paul’s older sister has said she no longer feels safe in the family home and wants to move out.

“We’ve actually had to call the guards on our own son,” his father told The Journal.

Paul’s parents have lodged complaints with Lucena and the HSE over his treatment to date. When asked about the situation, both organisations said they cannot comment on individual cases.

A spokesperson for Lucena confirmed that the service is “engaged with the family” but “unable to comment any further at this point”. They added that Lucena has “an established channel” to support families and “deal with any issues” they have.

The HSE spokesperson said, in general terms, CAMHS, disability services (CDNTs) and primary care “work closely together to provide care to a child or young person” in line with “national structures, policies and guidelines”.

In cases where the service pathway is “unclear”, an Integrated Children’s Services Forum (ICSF) is established to decide “where a child or young person’s needs will be best met at any particular time”.

ICSF meetings are attended by representatives from different HSE services and other relevant agencies such as Tusla and Acute Hospital Services.

Paul’s parents want him to be seen by an early intervention psychosis (EIP) team. 

The country’s first-ever CAMHS EIP team, which is being run by Lucena, has just been established. All staff members are in place bar the consultant psychiatrist, who has been recruited and is due to start work soon. 

The Journal understands that the team recently started to see patients, but is being supported by other psychiatrists until the consultant psychiatrist takes up their post. 

Paul’s parents have been told he will be seen by this team soon, but no exact date has been given. If their son had received early intervention for his psychosis three years ago, they believe his condition would not have deteriorated to this point.

Meetings between Tusla and the HSE

In a letter sent to Paul’s parents on 2 April a representative from Tusla, who carried out an assessment of the case, outlined her concerns.

She brought up Paul’s case at recent Early Warning Meetings (EWMs) between Tusla and the HSE to discuss additional support “so that this family unit does not experience a complete breakdown and so that all of the children can be and can feel safe in their home”.

EWMs regularly take place between Tusla and various teams within the HSE. Representatives from relevant services discuss a child’s needs and determine the best way to intervene. 

The Tusla worker’s assessment noted that Paul’s parents “are trying their best but they are feeling extremely overwhelmed and unsupported”.

“There are absolutely no concerns about the adult behaviour and about the parents’ willingness to engage with supports offered in the community.”

In January representatives from Tusla and the HSE discussed Paul’s needs, the possibility of him receiving respite care, and how to keep his siblings safe.

In the letter to Paul’s parents, the Tusla representative noted that the outcome of this EWM was that “consideration would be given to OT input through either Primary Care or CAMHS”.

I was advised, following this meeting, that [Paul] did not fit criteria for respite or residential care, based on the fact that he does not have a disability.

A further EWM took place in March. At this meeting, Tusla “enquired about the possibility of [Paul] being referred for respite or residential care, based solely on his mental health diagnosis”, according to the letter.

The agency “also wished to enquire about the possibility of an updated ASD assessment” for Paul.

“Unfortunately, the disability manager and the principal for HSE Primary Care did not attend this meeting so an update was not provided,” the letter notes.

A previous assessment determined that Paul does not have autism spectrum disorder (ASD). However, his parents believe this finding is incorrect and want another assessment to be carried out.

The Tusla representative said “urgent” intervention is needed in Paul’s case, adding that she will raise these issues at another meeting in the near future.

“I have clearly named my concern in relation to the impact of the situation on the family unit and my concern that [Paul] cannot access any respite care because there does not seem to be provision of such a service for children who do not have a diagnosed disability such as ASD,” she wrote. 

“Because of this, Tusla will again bring [Paul's] case for discussion at EWM and enquire about the possibility of either a review of the previous ASD assessment or an updated assessment and we will again enquire about any other possible pathways whereby respite or residential care can be considered.”

The HSE and Tusla did not directly address the content of this letter when asked for comment.

However, they issued a joint statement saying that the early-warning system “does not supersede local working arrangements and is only activated when difficulties are experienced around communication or sourcing a service”.

They added that a quorum of two members from HSE services and two members from Tusla must be present for an EWM to commence.

The statement confirmed there are currently no HSE-funded respite services available to children based solely on a mental health diagnosis.

‘He became possessed’

Prior to the intense episode he experienced last month, Paul started to complain about chest pains. This was unusual, his father said, as Paul rarely complains about anything physical. His parents were worried and called an ambulance.

At this point, Paul and his parents were in the living room. Suddenly, something changed.

“He kind of zoned out for a while and then he started reacting to things that weren’t there. That was not the first time we’ve seen him do that, he can be quite jittery.

“He would look over his shoulder. He can hear noises that aren’t there, hear voices that aren’t there. This escalated within about 30 seconds,” his father recalled.

He went from pretty much okay to dragging me and his mother around different parts of the room. He could see demons, the devil.

“He was physically moving me around the room because they were behind me. It was quite aggressive, but he was actually trying to protect me. Obviously I didn’t see them behind me, so he grabbed me and pulled me out of the way.”

Paul then “retreated to the sofa and hid under a blanket”. His four siblings were in a different room but were aware of what was happening and were scared. His father opened the living room door to go out and reassure them.

“Paul absolutely freaked out because I had now let [the demons] out of the sitting room. So they were going to get his siblings. 

“He was screaming, shouting, he was telling us to get away from them, to move, they’re behind us. Then he started to say, ‘It’s my fault they’re here, they’re here because of me’.”

At this point Paul ran into the kitchen and tried to get a knife from a drawer.

“He said, ‘If I’m gone, they’ll go too, you’ll all be safe. Just let me do it please’.

This is the exact phrase he used: ‘I’m willing to sacrifice myself to keep you safe’.

His mother tackled him and pinned him to the ground to stop him from stabbing himself. His parents had to keep him pinned down until paramedics arrived and brought him to hospital.

When Paul has an episode, his father said he will “come back” for a few seconds. “He’d actually kind of sit up and say, ‘Why am I in the sitting room?’ and then be gone again.

“You can often reason with him, but not this time. He was just gone. Even his facial expressions were different.

“The only way to describe it is like watching a horror movie when you see someone possessed, that is the only way to describe it. He was completely gone, our son wasn’t there anymore.”

After the incident, Paul spent a couple of days in hospital before coming home.

When Paul “comes out” of an episode he is “riddled with guilt and shame because he realises what he’s done”, his father said.

He has actually said the words, in the last couple of weeks, ‘I’d rather be dead than dealing with this anymore. No one helps me’. This is an 11-year-old.

“I think it is absolutely disgusting that an 11-year-old can enter into a full psychotic state and attempt to take his own life, and we are absolutely no different than we were before that incident. 

“We honestly believe that if this continues the way it’s going, by the time our child is 16 or 17, he’s either going to be in a box or he’s going to be in prison.”

*Name changed to protect the child’s identity

Read more articles in this series >>

 

FALLING THROUGH THE CRACKS

How are inadequate services impacting young people with psychosis?

By Órla Ryan

The Journal and Noteworthy are exploring access to services for people with psychosis and/or schizophrenia as part of a wider series called Falling Through the Cracks.

We would like to hear from teenagers and young adults – or their parents / guardians – who have been impacted by the lack of services available to them. Please email orla@thejournal.ie to share your story.

Supported by the Rosalynn Carter Fellowship for Mental Health Journalism in the Republic of Ireland in partnership with Headline, a Shine programme.

If you have been affected by any of the issues mentioned in this article, you can reach out for support through the following helplines. These organisations also put people in touch with long-term supports:

  • Shine - 01 860 1610 or 086 040 7701, phone lines are monitored Monday to Friday 9am to 5pm (mental health difficulties including schizophrenia and psychosis, individual and family support)
  • Samaritans – 116 123 or email jo@samaritans.org (suicide, crisis support)
  • Text About It – text HELLO to 50808 (mental health issues)
  • Aware – 1800 80 48 48 (depression, anxiety)
  • Pieta House – 1800 247 247 or text HELP to 51444 – (suicide, self-harm)
  • Teen-Line Ireland – 1800 833 634 (for ages 13 to 19)
  • Childline – 1800 66 66 66 (for under 18s)
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