HSE 'failed' children by not giving access to palliative care

Bernard Gloster admitted the HSE failed two terminally ill children by not giving them access to palliative care services close to home. Picture: Sasko Lazarov/Photocall Ireland

The HSE “failed” terminally ill children towards the end of their lives by not giving them access to palliative care services close to home, chief executive Bernard Gloster has admitted.

The HSE chief made the admission in an apology to families, who, he said, were “badly let down” and from whose experience the agency still has “so much to learn”.

He referenced two children — Danny Norris from Waterford and Fiadh O’Connor from Wexford — whose parents had to fight the HSE for home palliative care services which had been denied to them.

It was only after Danny and Fiadh’s parents went public, and their cases were raised in the Dáil and the media, that HSE chiefs relented just a matter of days before the children died.

The HSE on Wednesday night confirmed that paediatric palliative care services, including support at home for children at the end stage of life, have now been confirmed for the south-east, in line with all other regions in Ireland.

Mr Gloster said: “I want to apologise to the families of Fiadh and Danny, who we failed and who could not avail of these services.

They were badly let down when they most needed care and support. Having met with them it is clear we still have so much to learn about supporting families particularly when life-limiting illness reaches that crucial stage.

“There is no doubt that were it not for their courage and advocacy in their trauma, other children may well have had the same challenges in the future.”

Mr Gloster said it was “so regrettable” what the children’s families had been forced to endure when they were already “suffering immeasurable heartache and grief”.

He said he regretted what they had to go through before the HSE made necessary changes to ensure that “no other child or family has to suffer due to lack of community palliative care services”.

Danny died in December 2022, just days after his family won a case against the HSE to secure palliative care in his own home.

He had spent the last few months before he died in Children’s Health Ireland at Crumlin Hospital receiving treatment.

His family, from Ballymacarbry on the Waterford/Tipperary border, had been refused home care for him, despite their pleas that he be allowed to be cared for surrounded by family and friends.

Parents Lisa and Lar campaigned for the restoration of the home paediatric palliative care service, which was removed in 2017, to be restored for families like them because they did not want anybody else to have to go through the trauma that HSE officials had put them through.

Mr Gloster’s apology comes nearly a year after Taoiseach Leo Varadkar promised the Dáil he would convene a meeting with Health Minister Stephen Donnelly and the HSE to get “a proper overview” of paediatric palliative care services.

Mr Varadkar also promised to “find out what the problem is” and then he, Mr Donnelly, and the HSE would “fix it”.

That promise was made in March 2023, just weeks before Fiadh died at home in her mother’s arms “holding her daddy’s hand”, according to her death notice.

Before she died, her family said they had to publicly “beg” for their daughter to be cared for and treated at home.

'Major deficit'

The HSE on Wednesday night said the confirmation of paediatric palliative care services for the south-east “corrects a major deficit in the region for children with life-limiting conditions and their families”.

It said four specialist palliative care teams in the south-east are now providing care to terminally ill children as part of a multidisciplinary approach which ensures children can receive palliative care and die at home in line with the wishes of the family.