Mum says the costs of hospital delays include children’s dignity and rights

Amanda O'Rourke's son Hugh, now 18, was born the year a plan to build a National Children's Hospital in Dublin was first announced. Picture: Ciarán O'Rourke

In 2006, a mother attending Temple St Hospital with her baby, newly diagnosed with a rare condition, first heard of plans to build a new National Children’s Hospital.

That baby boy is now 18 years old and his mother, Amanda O’Rourke, said: “People talk about cost but there is cost to the children’s safety as well; their dignity and their human rights.”

In those years, Amanda has seen the “excellent” care they received fade away for other families under the strain of overcrowding, staff shortages, and funding shortfalls.

Back in 2006, the proposed children’s hospital was to be co-located with the Mater Misericordiae University Hospital. She said: 

I remember it well, pushing my newborn down Eccles St for our first appointment in Temple St. I imagined many future appointments in the new children’s hospital. 

Then, in 2012, plans changed, and it was decided to locate the proposed National Children’s Hospital at the current site at St James’s Hospital.

Construction finally started in 2017.

Amanda’s son Hugh was diagnosed at three weeks old with a chromosomal anomaly and later with autism and scoliosis.

She has nothing but praise for the support they received.

There were enough doctors and nurses and healthcare workers and there was capacity,” she said. “But the efficiencies that were there, I’ve seen almost managed out of the system.”

Amanda describes weekly physiotherapy and how easy it was to get a referral when one therapist suspected scoliosis.

Members of the Unite union took part in a  stoppage at the National Children’s Hospital site on Friday over travel-time pay. Picture: Leah Farrell/Rolling News

“I think the following Wednesday we first saw Hugh’s orthopaedic surgeon,” she said.

Now, however, she said: “There is so much crisis at the moment that the thought of moving within the system is frightening for parents.”

Watching on as the cost spirals towards €2.2bn for the new National Children’s Hospital, which has been beset by delays, she said: “That crisis is lost in the whole thing.”

An active member of support groups, she described some children being lost in the system: 

I remember hearing about kids like Hugh. They would be referred and they wouldn’t be seen for two years. 

Advocacy groups learned this week that the long-delayed opening date of the hospital will now likely be 2026.

“We’ve been very well served by the system over the years but it’s no longer possible for a lot of the kids,” she said.

Amid the pressure, she fears human moments are being lost as much as medical opportunities.

Phone calls go unanswered, and waiting list places are altered without alerts to parents.

“That is why people are really concerned now for their children, for the safety of their children and for the health professionals — and the trauma they [hospital staff] experience because they are watching this and trying to manage it,” said Amanda.

Children’s Health Ireland sites — Temple St, Crumlin, and Tallaght — now feature in trolley counts from the Irish Nurses and Midwives Organisation and HSE, which detail severe overcrowding that is likely to continue this winter.

A key concern is for children with the most complex needs. She said: 

There are a lot of decisions where those kids are being sidelined and treated as if they are bed-blockers — that is how it appears to many families.

“Where are we as a country if we are allowing that to happen? It’s hard for people to listen to the constant spin.”

Amanda worked in the hospitality business, specialising in hotel openings, and then for five years with KPMG, until Hugh was born.

She noted with concern a new KPMG review which said the lack of clarity around the opening date is affecting the three existing hospitals, where staff are struggling with the pressures of overcrowding.

“I’ve been watching that for a number of years, and I’ve seen certainly in Temple St a very happy workforce fade away,” she said. 

“As a hospital, there are scandals there at the moment and there’s lots of very good people that are lost in that.”

A number of reviews are ongoing into spinal surgery in CHI at Temple St. A HSE audit is examining how a €19m funding package for this service was spent.

Amanda shares the concerns in the KPMG report about staffing pressures. In her experience, “quite a number of staff would have an exit strategy” and may not move to the new hospital when it eventually does open, she said.

“You can’t assume everybody is going to move with the hospital.”

She expressed gratitude and relief that she and her husband Ciarán feel that their son was cared for so well despite the new hospital not opening.

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“He’s a confident young man,” she said. “He’s found his way around to make sense of what he is going through by the great care he’s had since he was a baby. And us as a family as well have always been nurtured through the system.

However, Amanda is fearful of what the next few years could hold for her friends and their children.

“What I see now in the system — with the best will in the world — is they are not able to nurture as much. They just don’t have the time,” she said.