On Tuesday 2 December, the Northern Ireland Assembly Health Committee published the findings of its inquiry on Access to Palliative Care Services in Northern Ireland.
The committee’s report highlights what we have long been concerned about: children’s palliative care in Northern Ireland is significantly underfunded, creating major barriers to delivering the care seriously ill children and families need. Only six of the 10 specialist children’s palliative care beds are currently open, and community-based and out-of-hours support remains inconsistent—often relying on the goodwill of overstretched staff rather than sustainably planned and funded services.
Reacting to the inquiry report, Nick Carroll, Chief Executive of Together for Short Lives said:
I am pleased that the Health Committee has recognised these serious challenges and made strong, practical recommendations to address them. Children’s palliative care in Northern Ireland is critically underfunded, and families are paying the price. For many, the Northern Ireland Children’s Hospice is a lifeline, yet a £700,000 funding gap threatens its ability to deliver essential care. This cannot continue—sustainable investment must now follow.
Earlier this year, freedom of information requests by Together for Short Lives revealed the extent to which children’s palliative care depends on staff working beyond their contracted roles and hours, rather than on sustainably commissioned services. We found that 24/7 end of life care at home, in line with established quality standards, is not fully available in any trust area on a formal basis. Only one trust offers partial provision, and even then, out-of-hours support is delivered on an overtime basis rather than through a dedicated service.
Nick Carroll added:
I particularly welcome the committee’s call to improve community-based and out-of-hours support. Right now, these services depend far too heavily on professionals going above and beyond the scope of their role. Families need reliable, round-the-clock care, not a postcode lottery. Investing in these services and ensuring sustainable access to specialist paediatric palliative consultant care until a consultant can be permanently appointed must be an urgent priority for the Department of Health.
Together for Short Lives urges the Department of Health to act swiftly to implement the Committee’s recommendations and ensure sustainable investment for these vital services.