‘My 10-year-old son wants to be dead. Nobody will help him’

Imagine the desperation of being the mother of a 10-year-old boy who "wants to be dead" every single day of his life. Or having to sleep next to your teenage son or daughter every night for fear they will take their own life. This is the harrowing reality of life for parents all over Ireland trapped in the nightmare of being on "suicide watch" for their own children 24/7 due to a dire lack of adequate Child and Adolescent Mental Health Services (CAMHS).

“My son wants to be dead. Every morning I get up, I know that during that day, I am going to have to convince him that he does not want to be dead. He thinks being dead will be easier than being the way he is because nobody will help him,” explains Laura, a distraught mother from the southeast of the country (who does not want to be identified).

Her son, who is diagnosed with severe verbal and oral dyspraxia, sensory processing issues and high anxiety, is aware that he is different from other children, and far behind them socially and academically.

“When he told us at the age of nine that he wanted to be dead and could tell us exactly how he was going to do it, we were shocked and stressed, and brought him straight to our GP. He was referred to CAMHS where we got an appointment quite quickly as he was an urgent case.”

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Case was closed

However, after being seen three times by a psychiatrist, Laura says it was decided that her child no longer met the criteria for the services and his case was closed in August 2016, without the family being informed. In September 2016, Laura received a questionnaire in the post for Attention Deficit Hyperactive Disorder (ADHD), which she filled out and returned.

When she rang her local Child and Adolescent Mental Health Services in March 2017 to find out what was happening, she says she was asked, “Are you sure that came from us?” She has no idea where that questionnaire went and, despite repeated attempts to contact the service by herself and her son’s GP, she has heard nothing back.

Not a day goes by that he doesn't have at least three meltdowns

Laura and her family are unfortunately, like so many others whose children are on the service waiting list, not in a position to fund private care for her son, which would cost thousands of euro in his case.

Laura has to force her child into school every day despite the fact that this increases his anxiety levels. Not a day goes by that he doesn’t have at least three meltdowns – one in the morning before school, one after school and one at night – and each episode can last up to an hour.

Nobody is helping our child who is literally screaming out for help

“We cannot understand why our child is not eligible for help when he is going through this every day. [TD] Mick Wallace tried to get an answer in the Dáil, but nothing has happened. In the meantime, my son is left suffering. Nobody is helping our child who is literally screaming out for help. I know I’m not alone – there are others in the same boat out there.”

Harrowing experiences

Senator Joan Freeman is on a mission to highlight the harrowing experiences of families dealing with the CAMHS, and to bring about much-needed change in this area. The founder of Pieta House is calling for the country to get behind her on this as it got behind her for Pieta House, which is why that organisation has been such a success.

Freeman was appointed rapporteur to lead the Senate Public Consultation Committee, which is due to hold a public consultation day on Thursday, June 29th. The aim is to create new legislation that will be more beneficial to those needing the care of CAMHS and to put an end to children being admitted to adult psychiatric units.

Some of the stories I have heard  have been so harrowing that I wonder how there is not another whistleblower situation here

She has received hundreds of submissions from parents and young people from all over the country with the stories of their experiences, as well as people working in the services.

“I have heard from so many mothers and fathers who say they have to sleep with their children to keep them safe. All life stops when this happens to a family. Some of the stories I have heard in the last few weeks have been so harrowing that I wonder how there is not another whistleblower situation here. I think it could happen yet,” she comments.

One of the recurring themes from the submissions to the Senate committee is the gap in services for 16-to-18-year-olds with mental health issues, who end up in “no-man’s land”, according to Freeman.

“If a child is 16 and suicidal or self-harming in Dublin, and is brought to the children’s hospital, they are being told they cannot be not seen if they are 16 or older, and if they go to the A&E department of a general hospital, they are being told they cannot be seen if they are under 18. These parents and children are desperate for help.”

One mother who contacted Freeman claims her daughter went on the CAMHS waiting list at the age of 16, and was finally seen a year and a half later. However, within a few months, she was told she would have to go back to her GP to be put on another waiting list for the adult services.

Freeman says: “The Minister for Mental Health and the HSE agree that children should not be put into adult psychiatric units, but it’s still happening. Children are seeing things they should never see in these units, which are for adults with enduring mental illnesses. We have one terrifying testimony from a girl who was placed at 16 into an adult unit, and has never been the same since. She witnessed people being restrained, psychotic episodes, some violent, and patients screaming and shouting.”

Recurring theme

Another recurring theme of the submissions is the damage being done to the mental health of parents who end up depressed themselves because of the stress of watching their children struggle with no sign of any help.

Freeman accuses the HSE of making “a cottage industry out of waffling” on this issue, but promises that on June 29th, parents and staff members will speak out about the truth of the child and adolescent mental health services in this country.

In relation to the current staffing issues, she points out that the pay and conditions for staff in the child and adolescent mental health services here are absolutely appalling, and says it’s no wonder they emigrate as soon as they qualify.

It is the function of CAMHS to provide a specialist mental health service to those aged up to 18 who have moderate to severe mental health disorders that require the input of a specialist multidisciplinary mental health team. They must be referred by a GP, paediatrician or Tusla, the child and family agency.

Independent TD Mick Wallace says he is constantly approached by families in dire need of help for suicidal children and teenagers in the southeast of the country. A 16-year-old girl recently spent the night on a chair after being admitted to the adult mental health unit at Waterford Regional Hospital where there was no bed available.

‘Screaming for help’

Another mother recently approached him in a supermarket about her son “who presented with suicidal ideation and spent five days screaming for help in Wexford Hospital” as child psychiatry and psychology services were not available in the county.

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Wallace is scathing of the HSE’s attitude to these parents, noting that a kinder holistic approach would not cost any more.

He adds: “There seems to be a reluctance to engage with psychotherapists – the HSE philosophy seems to be very much drug-driven and less interested in therapy. One of the excuses I have heard is that the psychotherapy profession is not regulated; well, then, why don’t they regulate it? There are plenty of good, well-qualified psychotherapists who could be helping a lot of the children on the CAMHS list.”

Wallace also highlights the lack of out-of-hours services for children and adolescents in mental distress in the southeast and other areas of the country.

“To have a service only from nine to five, Monday to Friday is incredibly frightening for parents. The idea that a child is only going to have a mental health problem and need help during those times is ludicrous. In fact it is during the out-of-hours times that they are more likely to have a crisis.”

Peter Hughes, general secretary of the Psychiatric Nurses' Association (PNA), says the salary and conditions being offered by the HSE are not attracting psychiatric nurses into the adult and CAMHS services, and this is having a knock-on effect on waiting lists. He points to the UK where the NHS offer better terms and conditions and incentives, such as subsidised accommodation.

"There is a severe crisis in recruitment and retention of psychiatric nurses in general, and the HSE and Department of Health need to look at incentives to attract people in and then ensure opportunities for further education to keep them.

“St Patrick’s Hospital and the Mater Private are offering a sign-on fee to applicants who commit to working in their services for a certain period. It wouldn’t cost a lot to pay €3,000 to €5,000 per applicant to attract new nurses, half when they sign on and half at the end of the agreed term of service.”

Hughes points out that Vision for Change recommended there should be 100 inpatient CAMHS beds across the country; two years ago there were 74 beds in operation, but this has dropped to 52 with the closure of half the beds at the state-of-the-art Linn Dara unit at Cherry Orchard Hospital in May due to a shortage of nursing staff.

He adds: “When a child from Donegal, for example, needs to be admitted to the CAMHS service, they have to travel to either Galway or Dublin, which is a long way away from their family. CAMHS can’t maintain a nine-to-five service, never mind an out-of-hours service. We don’t even have out-of-hours community support in adult psychiatry services, and are a long way from having it in CAMHS. There are 24-hour crisis intervention schemes in the community in the UK and Australia for many years – we are way behind here. We don’t have one service like that in this country.”

In numbers: CAMHS inpatient beds and waiting lists

• 2,419: There are 2,419 children and young people with mental health disorders on the waiting list for the Child and Adolescent Mental Health Service (CAMHS), 218 of whom are waiting for more than a year.
• 190: Of the numbers on the waiting list, 1,167 are waiting less than three months, 490 between three and six months, 354 six-to-nine months and 190 for nine to 12 months (latest figures available from March 2017).
• 80: More than 80 posts across the CAMHS teams nationwide remain unfilled. These include consultant psychiatrist, psychologist and clinical nurses specialist posts. The highest vacancies are in the Kildare/Wicklow/Dublin CHO, where 27 posts are unfilled and the southeast of the country, where there are 12 vacancies.
• 52: The number of CAMHS inpatient beds has dropped from 74 to only 52 in operation across the country. This includes 11 beds in the 20-bed unit at Eist Linn, Cork; 20 beds at Merlin Park, Galway; six beds at St Joseph's, north Dublin, and 11 beds at Linn Dara, west Dublin.
• 11: The HSE made the decision to temporarily reduce the inpatient capacity at the Linn Dara unit on the grounds of Cherry Orchard Hospital in Ballyfermot from 22 beds to 11 beds for the duration of the summer beginning May 26th, due to a shortage of nursing staff.
• 1 in 5: Almost one in five children were admitted to adult psychiatric units in last year, according to the Mental Health Commission report 2016. In 75% of cases, this followed an unsuccessful attempt to get an inpatient CAMHS bed.
• Zero: The availability of child and adolescent mental health services outside of normal working hours is nonexistent in many parts of the country.
• 6: In the past two years, six children were sent outside the State to avail of special care that cannot be provided in Ireland.