Parents' fight for mental health services for their children 'wears you down and burns you out'

Speakers warned children and teens could be 'passed from one service to another' instead of getting help.

The fight for services "wears you down and burns you out", a mother with lobby group Families for Reform of Camhs has told TDs and senators, who heard parents of children with mental illnesses face huge distress.

She said real help often came from individual staff going “out of their way” rather than from the system itself.

The Oireachtas health committee also heard of an “urgent” need to support other mental health care for people under 25.

This includes the 98% of children who do not need what specialist Camhs (child and adolescent mental health services) offer.

Hannah Ní Ghiolla Mhairtín said: “Our first time coming into Leinster House was two or three years ago. The waiting list numbers are the same today as then.” 

She called for more transparency on reforms, saying families are not reassured by what little they know.

“We’ve spoken to so many parents, and obviously having a child experiencing difficulties is in itself distressing, but the bit that wears you down, the bit that burns you out is the fight for services,” she said.

“Having that extra on top of what you’re already going through is so disheartening.” 

Ms Ní Ghiolla Mhairtín and other speakers raised the challenges for autistic children who also have mental health difficulties.

“Families tell us Camhs says ‘we can’t accept you, you need an assessment of need’. Then that obviously takes a few years,” she said.

She added Camhs may then refer them to disability care. This service may say the child is too anxious for its care.

This is a “major concern” among the group’s 1,500 families, she said.

When Senator Teresa Costello asked what was working, she said: “I think individual staff members who go out of their way to help a child make such a difference in families’ lives.” 

The committee also heard efforts to expand Camhs since the Maskey report, published four years ago this week, has led to less attention on other services.

The 2022 Maskey Report found care for 240 children and teenagers in South Kerry did not meet standards.

Sinead Keane, chief executive of youth charity SpunOut, said young people had told them of playing a waiting game, especially in rural areas.

“Young people identified a lack of supports surrounding Camhs, meaning it was Camhs or nothing,” she said.

They didn’t feel like they had appropriate interim supports while on Camhs waiting lists, or effective primary care supports that could prevent the need for Camhs altogether.

Ms Keane and other speakers warned children and teens could be “passed from one service to another” instead of getting help.

She welcomed HSE plans for a "single point of access" system. “I think that will be crucial,” she told Sinn Féin health spokesman David Cullinane.

At the pilot stage, it will mean patients can go to one service knowing if that is not suitable, they can be referred on without joining another waiting list.

Jigsaw chief executive Joseph Duffy said its centres had more than 11,000 referrals last year, an increase of 23% on the year before.

He highlighted difficulties in referring children and teens between Jigsaw and Camhs teams, saying there was no consistency nationally to how this was done.

While he welcomed funding to open centres in Ennis and Waterford, he estimated between €10m and €15m extra was needed for Jigsaw alone.