29 Sept 2022

Lack of funding may impact on Children's Hospice end-of-life care

Northern Ireland Children’s Hospice has said that inadequate government funding may force the charity into making cuts to its end-of-life services, the Derry News can reveal. To this point, the local charity has only managed to maintain its current level of level of care thanks to “unwavering voluntary support”. It offers specialist paediatric hospice care for children who have been diagnosed with a life-limiting or terminal condition. The only service of its kind in Northern Ireland, the Children’s Hospice cares for over 300 children and their families each year, including those from Derry. There are many ways which Northern Ireland Children’s Hospice delivers care, both at ‘Horizon House’ Children’s Hospice in County Antrim and in the family home, depending on the specific needs and wishes of the family. Over the past two years the charity has seen an increase in the demand for children’s hospice care for new-born babies whose life expectancy is sadly very short. The specialist children’s nursing team ensure that each child lives well to the end of their lives, surrounded by love and high-quality palliative and end of life care. These babies are now living for weeks, often months, however the medical conditions are incredibly complex and therefore the need for children’s hospice care is growing. NIH Chief Executive Heather Weir explained that this year, the cost to run the Northern Ireland Children’s Hospice is £4m, with just 36% of these costs met by government. Its partnership approach with the Department of Health and the Health and Social Care Board has focused on addressing the increasing demand for paediatric palliative care in Northern Ireland. With joint investment from the Department of Health Transformation Funding from 2018–2020 and charitable funding from generous local donors, additional capacity was funded in late 2018 with two additional cots being opened at the Children’s Hospice. ‘Unsustainable’ However, the challenge for this partnership is to secure recurrent future investment to continue these vital services so that every parent who is given the devastating news that their child has a short life expectancy has access to the Children’s Hospice and that no child goes without palliative and end of life care. Ms Weir commented: “The lack of recurrent, sustainable funding means that we can only plan on a short-term basis with uncertainty regarding future government funding. Currently at Horizon House we have 7 of our 10 children’s bedrooms operational. “In real terms, this represents over 1,000 vacant bed nights per year which could be used to care for children with highly complex life limiting conditions and end of life care needs. “In order to continue to deliver our current level of services and address increasing demand, long-term planning is required to ensure the provision of palliative care for our children now and in the future.” She continued: “We hear on daily basis from families who use the Children’s Hospice of the difference our services make, and how the environment and high standards of care given reassures them during what is a heart-wrenching time. “Thanks to unwavering voluntary support, we have not yet been faced with making the difficult decision to reduce services as a result of funding challenges. “However, continual low levels of government funding year on year will make service levels unsustainable in the long term. “With additional funding, children’s hospice care in Northern Ireland could be expanded. We could open our additional three beds and therefore be on hand to meet the increasing needs of local children and their families at a time when they need us most.” Yesterday, in a statement to the Derry News, a spokesperson from the Health and Social Care Board said a needs assessment will inform its "commissioning intentions" going forward. She explained that it has a contract with the Northern Ireland Children’s Hospice for a short breaks service. That contract also includes bereavement support for families and training for healthcare professionals on paediatric palliative care matters. "In line with good practice on procurement issues," she added, "this contract is due for renewal and the HSCB will be taking forward a needs assessment of children with complex needs known to Trusts who could avail of a short breaks service. "The outcome of the needs assessment will inform our commissioning intentions going forward. "In September 2018, the Board also commissioned a Paediatric and Life Limited Service from the Hospice. "This was commissioned to provide wraparound support for those children who are nearing the end of their short lives. This service will continue to be funded until March 2020. The arrangements for 2020/21 have yet to be determined."

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