Paediatric Palliative Care Services, including support at home for children at end stage of life, have now been confirmed for the South East, in line with all other regions in Ireland.
Formalised in October 2023 this corrects a major deficit in the region for children with life-limiting conditions and their families.
The 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 their family.
In recent years, families in the South-East had to publicly plead and advocate for these services including in the cases of two children, Fiadh O’ Connor from Co. Wexford and Danny Norris from Co. Waterford.
Bernard Gloster CEO, HSE, said: “I want to apologise to the families of Fiadh O’ Connor from Co. Wexford and Danny Norris from Co. Waterford, 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. I want to thank both families for their generosity in sharing their experiences with me. 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. It is so regrettable that they had to endure this experience, when they were already suffering immeasurable heartache and grief, for us to make the necessary changes to ensure no other child or family has to suffer due to lack of community palliative care services.”
Minister for Health, Stephen Donnelly, said: “I want to express my sincere sympathies to Danny Norris and Fiadh O’Connor’s families on their loss. It is not acceptable to me as Minister and as a parent to see the absence of paediatric palliative care services for any period of time, purely based on where you live. This added to the pain and suffering inflicted on the Norris and O’Connor families at the worst time imaginable."
He added: “Even when resources are not an issue we clearly have so much to do to improve and bring fairness to families right across the country. Fiadh and Danny should never have had to have these experiences in their last stage of life, nor should their parents have had to fight for these essential services and I welcome the HSE's acknowledgement of that. More importantly that it is now corrected and guaranteed for any child or family in the South East who may need this support in the future.”
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