Paediatric Palliative Care Services Guaranteed in the South East

Paediatric Palliative Care Services including support at home for children at end stage of life has 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 the family.

A very difficult situation prevailed in the South-East Region in recent years resulting in families having to publicly plead and advocate for these services not being able to get this support and not having the certainty they needed at such a critical time. This caused extreme heartbreak at an already devastating time. Public attention to the cases of two children, Fiadh O’ Connor from Co. Wexford and Danny Norris from Co. Waterford in late 2022 and 2023 demonstrated how serious and unsustainable this position was. HSE Palliative nursing and medical staff in the area are now responding to and participating fully in the care of children who require palliative services correcting an inequity that prevailed for some time.

According to Bernard Gloster CEO, HSE: “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.”

Palliative care for children and young people with life-limiting conditions is an active and total approach to care, from the point of diagnosis or recognition throughout the child’s life, death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on the enhancement of quality of life for the child/young person and support for the family. It includes the management of distressing symptoms, provision of short breaks and care through death and bereavement. It is a vital service.

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.

“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.”