Wednesday 19 December 2018

Give our sick kids a greater voice on board of hospital

Parents being ignored, says Donal Walsh's dad

Donal Walsh with his parents Fionnbarr and Elma
Donal Walsh with his parents Fionnbarr and Elma

Claire McCormack

THE father of inspirational teenager Donal Walsh wants to officially represent the parents of sick children on the board of the new National Children's Hospital.

In an interview with the Sunday Independent, Fionnbar Walsh claimed the voices of children and their parents have been "ignored" throughout the entire debate of the location of the new hospital.

And he urged the Government to focus on the needs of sick kids and their families who will have to travel to the hospital from all corners of the country, rather than "political and academic interests".

"There is too much power with regard medical politics, political politics and the universities on the agenda here," the grieving father, whose 16-year-old son finally lost his brave battle with cancer in May 2013.

"Health Minister Leo Varadkar needs to take independent consultation, not from those with protected or self-interests - he needs to take a reasonable look at this from the perspective of the patient and their parents."

Mr Walsh, who lives in Tralee, Co Kerry, with his wife Elma and daughter Jema, said he has written to every minister since Mary Harney offering his services in any discussion on where the children's hospital should be located.

"We are the ones who are going to have to be travelling to it. I spent nearly two years separated from my wife driving up and down to Crumlin (Our Lady's Children's Hospital) with Donal. One of us was gone for virtually six out of every eight weeks."

The Government insists the much-delayed hospital project is a "priority" and will be the most significant State investment in child healthcare.

However, Mr Walsh - who recently, along with his family, was awarded with Honorary Life Membership of the University College Dublin Law Society - believes the controversial decision to build the NCH on the campus of St James's Hospital will be a nightmare for children and parents travelling from outside Dublin.

He told the Sunday Independent: "The area is already too crowded and there isn't sufficient capacity for parkland or further expansion for development - it's in the middle of a city."

The development board of the hospital plan to open a 50-bedroom Ronald McDonald charity house for families alongside the NCH, but Mr Walsh doubts this will be enough to cater for the needs of patients' families. "You could be talking about up to 350 children, that's 350 sets of parents that may need to be there and their plans are not realistic or practical," he said.

In an email response to queries from the Sunday Independent about the possibility of Mr Walsh being appointed to represent the interests of parents on the NCH board, the chief executive of the Children's Hospital Group Board, Eilish Hardiman, said members are appointed "through the Minister for Health".

Ms Hardiman said there is an advocate for child services on the board, and also stressed all of its current members are parents themselves. However, Mr Walsh said this does not go far enough.

"They may well be parents themselves, but none of them are parents of a sick child in hospital today dying or with a long term illness. When Donal was in hospital we had to be there. We are the primary carers, we were the ones he wanted to hold his hand when he was throwing up, to empty his vomit basin and pee jar."

When asked if Donal had any thoughts on where the new children's hospital should be built, his father recited one of his son's most memorable lines.

"The men in suits and the politicians pay themselves thousands of euros a week, while the sickest and most vulnerable children in the sickest ward have to go out and fundraise with a bucket of paint and a paint brush."

Mr Walsh still believes it is unlikely the proposed NCH site on the grounds of St James's will get planning permission and urged the Government to revisit their options "before more money is wasted".

He added: "This is taking too long. Donal wasn't even born in 1993 when the first meetings of a National Children's Hospital started. Donal would have been 18 this year and not a sod has been turned. All we are doing is twiddling our thumbs on planning in the wrong location."

After our inquiries, a spokesperson for Leo Varadkar said the minister is willing to meet with Donal's father.. "Leo is happy to try and make an arrangement to meet Fionnbar to discuss issues affecting children's health," the spokesman told the Sunday Independent.

Sunday Independent

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