‘Something amiss’ with palliative care for Kilkenny children Taoiseach admits

There is “something amiss” with the provision of palliative care for children in the South East, including Kilkenny, Taoiseach Leo Varadkar has admitted in the Dáil.
Finding a solution ‘can’t wait,’ he said.

Just two clinical nurse-coordinators for children with life limiting conditions are in place in the region, he told the Dáil, after the issue had been raised by a TD from a neighbouring county.

He said that while those nurses are working to ensure a care plan based on patient need is in place in each case, “there is something amiss here.”

“We need a sustainable, long-term solution for the provision of paediatric palliative care services in the South East,” the Taoiseach went on to say.

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He told the Dáil that a plan is under development and that a multi-agency approach will be adopted.
“Some things may be able to wait, but this is not the kind of thing that can wait. I am keen to convene that meeting as soon as I can in the Department of the Taoiseach to find out what the problem really is and fix it as soon as we can.”

The matter was raised in the Dáil, last week, by Tipperary TD Michael Lowry, in the wake of heartbreaking stories from families in Tipperary and Wexford who had to fight to bring their children home from hospital for end of life care.

He spoke about two little children in Tipperary and the story of a little girl in Wexford was also raised. In each case the family had to make a public appeal for home-based palliative care for the children, so they could go home from hospital for their final days.

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Deputy Lowry asked why the South East region, including his own county of Tipperary as well as Kilkenny, Wexford and Waterford, is the only region where “paediatric palliative care does not exist?”

“Families should not have to resort to politicians or the media at such a painful and difficult time. It is gut-wrenching to think that the health system allows such failure,” he said.

“Last December I stood in this House to plead on behalf of a family whose seven-year-old son, Danny, was terminally ill. They wanted to bring Danny home from hospital to spend his final days with them and his young brothers. This was also Danny’s wish, following prolonged hospital stays. Imagine the anguish and helplessness they felt when they learned that bringing their precious boy home was not possible, that their child’s last wish was being denied because paediatric palliative care services are not available in the South East region where they live. There was a public outcry.”

Following “frenzied activity within the HSE in the region” because the spotlight was on it, it had to act, he said.
“This ultimately resulted in a full palliative home care package being put in place for the family. This would not have happened for this distraught family had it not been raised in this House.

“Danny did come home. He came home just a week before he left this world. At that time, I categorically stated that the trauma inflicted on this family could never be allowed to happen again. Just four months later, it has happened again. In fact, two families are reaching out for help at this time. One family has been forced to publicly highlight their plight in an effort to get paediatric palliative care for their four-year-old daughter. The mother of a terminally ill 11-year-old girl in Tipperary has contacted me regarding her fear that she will not be able to take care of her beautiful daughter in the familiarity of her own home.

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“Families have no alternative other than to broadcast their heartache in order to get the support they need.”

The Taoiseach said that, overall, Ireland has good palliative care services. “It is really important that people should be allowed to die with dignity.

“There is something wrong here. I am not sure what it is and I will take an interest in it,” he made a commitment in the Dáil.
“It is wrong and very sad that anyone should feel that they have to go public or explain very private and personal circumstances regarding the death of a child in that way to get the package they should have got sooner.”