Wednesday, February 16, 2022

Parents and children of the campaign for children with Spina Bifida and Hydrocephalus with David Cullinane, Opposition Health spokesperson and Deputy Reada Cronin in Naas last week
Photos: Jimmy Fullam

By Finian Coghlan

AFTER a decision to centralise Spina Bifida surgeries in Cappagh Hospital was deferred last month, a Naas mother has taken up the campaign.

She met with Opposition Health spokesperson David Cullinane last week at Deputy Réada Cronin’s constituency office on Chapel Lane in Naas.

Úna Keightley, a radiographer from Monread, and mother of Sean (11), led the delegation of parents and children to meet with the Sinn Féin spokesperson.

They are looking to get a Government commitment to have all Spina Bifida and hydrocephalus surgeries performed in Cappagh Hospital on the Dublin/Kildare border, and away from Temple Street, where their elective nature means a procedure might get triage bumped by an emergency admission.

Temple Street is absolutely bursting, and you can’t get in the door of the place,” said Úna. “A kid can be on the bed fasting before surgery, then someone comes in with a broken leg and the Spina Bifida patient gets bumped.

Cappagh doesn’t have an A&E, it’s a purely elective hospital, and we want to move Spina Bifida surgeries there,” she said.

Myself and another parent have put up the details of 69 kids in bits because of Spina Bifida – at risk of sores, losing limbs, feet turning inwards, at risk of amputation, because some have been waiting for up to four years for surgery.

Before medical advances it meant that many of these children would never have walked beyond their childhood, but now some of them will never walk.

Conor Greene from Cappagh [Clinical Director] went before the Oireachtas Health Committee to tell them how difficult it was, and this is laid out on our website [],” said Úna.

We met some other politicians, but they don’t seem to be getting the message because these kids need urgent care, some of these kids have lost their toes.

The Government are saying they’ll give money to Temple Street, and they’ll give to Cappagh, but that will never happen. “Surgeons and parents want the money given to Cappagh.

Twenty local authorities, including Kildare Co Council, have written to Stephen Donnelly to demand funding for Cappagh, and Seamie Moore [Mayor of Naas] has been great,” she said.

Mary Lou McDonald has brought this to the Dáil, and we’re shouting it from the rooftops,” she said, and this was confirmed by Deputy Cullinane.

Today I met with a group of families living in Kildare and campaigning for surgical services for Spina Bifida and scoliosis to be centralised in Cappagh,” he said.

With Mary Lou McDonald we visited Cappagh and Crumlin yesterday, and we now have a fair idea of the capacity required to deal with paediatric orthopaedics and it’s just €5.1m to fund the staff across the whole nation,” he revealed.

Cappagh is now the overflow for this as Temple Street is maxed to capacity.

We’re hoping to pick up on this, and find the €25m capital funding for this new paediatric orthopaedic unit at Cappagh,” he said.

Simply, it needs levels of capacity to be able to deliver properly, and this unit will have operating space solely for ortho operations, which get regularly bumped by triage in Crumlin and Temple Street as they are deemed elective, and have to wait behind emergency admissions like a broken leg,” said Deputy Cullinane.

The families are hoping to push this, and they really want hospitals to shorten wait times for Spina Bifida and Scoliosis,” he said.

People are asking us why we don’t go private, but the [surgical] skills don’t exist in the private sector,” said Una.

The public health doctors here for Spina Bifida are fantastic, they’re like magicians – Professor Greene, Professor McCormack – and we believe the €5.1m would increase Spina Bifida capacity at Cappagh by 400 per cent.” She said.

Since 2018 we started noticing things getting bad, but we all thought we’d be in a big new shiny place by now while Temple is bursting at the seams, way beyond capacity, even their CEO knows this.

They are discriminating against Spina Bifida patients because of their disability.

If my daughter fell off her bike and broke her leg she wouldn’t have to wait four years to have her hip put back in.

Spina Bifida patients are supposed to see a specialist once a year, but now it’s every three years, and none of them can wait for the new children’s hospital.

You have children now who are inoperable, and that is disgraceful.

Sufferers have quite a complex set of problems with their legs, their kidneys.

Minister Donnelly has suggested using the NTPF [National Treatment Purchase Fund – using State money to pay for treatment abroad] system, but that’s a generic answer, not a solution.

Are they waiting for them to die?

Cappagh would have to be invested in, and a funding application was supposed to be decided in January, but it has been left on some desk for a decision, and our job is to keep the fire lit.

I’m a radiographer by profession so I definitely know what I’m talking about, I know it inside out.

People are trying to offer money, but you can’t buy a cure. It has to be a Government decision to specialise in Cappagh.

We’d be happy to get anything out of this, because we’re kinda out of options,” she said.

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