To ask the Minister of Health what plans he has to ensure children’s palliative care is sustainably funded.

The Department and then Minister published the Paediatric Palliative and End of Life Care Strategy in 2016. This strategy was completed after considerable consultation with all relevant stakeholders across the sector in NI and beyond to ensure it was as comprehensive as possible. The Strategy includes 23 ambitious objectives that cover the full range of issues within paediatric palliative care, from diagnosis of a palliative or life limited condition through to bereavement support for families of those children who have passed away.

Subsequent to the publication of the strategy and with the availability of Transformation Funding in 2019, a number of specific innovations were introduced in NI.

This has included the following: -

The appointment of a paediatric palliative care lead in each Trust. Funding for this is for one programmed activity per Trust per week which totals £48,597 regionally;

the appointment of a Regional Paediatric Palliative Care consultant who was trained at Great Ormond Street but works at the RBHSC and has input across the region. The funding for this is £120,000 per year;

the appointment of Paediatric Palliative and Life Limited Nurse and service. The nurse works in RJMH and RBHSC supporting staff and facilitating a move to non-hospital setting (home or hospice) for step down or step up care, and where appropriate, an end of life care service. As well as the specialist nursing role, this service has access to one 24/7 hospice bed or virtual hospice bed with support available for over 300 bed nights per year. Following a recent uplift in funding £204,515 is now available per annum.

As well as the above a further £17,734 per annum was made available to offer administrative support to the Regional Paediatric Palliative Care consultant. There was also a further £4,189 in 2021/22 to Southern Health and Social Care Trust in respect of a palliative medical lead for Paediatrics Strategy.

In 2019, a Regional Paediatric Palliative Care Network (RPPCN) was created and this is chaired by a Paediatric Palliative Clinical Care lead. The network is made up of key clinical and nursing leads from each Trust as well as the NI Children’s Hospice. This network works closely together on two main areas. Firstly, the network identifies the key priorities for delivery in line with the strategy and puts in place measures to deliver same and secondly the network acts as a vehicle for the region to identify areas of best practice and share clinical opinion on specific cases to ensure continuous improvement.

To date the network has developed ante-natal care pathways, rapid discharge plans, advanced care plans and has also agreed pathways regarding pain relief, amongst others. Currently the network is also working on other key issues including the provision of 24/7 end of life care as well as examining how to best develop closer ties with colleagues in the Republic of Ireland.

To assist with the dissemination of clinical best practice a Project Echo scheme is run by the NI Children’s Hospice on behalf of the region. These are monthly clinical sessions where clinicians across NI come together to discuss and disseminate clinical best practice and learn from case studies.

The NICH provides a range of services to children with life limiting conditions and their families, including respite care, short breaks and end of life care. The Department has provided funding of £1.857m to NICH in 2023/24.

The NICH have advised the Department of Health that they are facing financial uncertainty, in light of this DoH official’s have been meeting with NICH the last of which was on the 9th May 2024. At that meeting the NICH discussed their financial situation and the dual challenges with an increase in costs and reduction in revenue. The NICH outlined that they have faced a rise in over 100% of non-salaried costs from £97,451 in 20/21 to £195,976 in 23/24. Alongside this the cost of fundraising has meant that where they would have seen a return on £4 for every £1 spent in 20/21 on fundraising now in 23/24 they achieve only £2 on every £1 spent. This has significantly impacted on income/ revenue available to the NICH who had been drawing down cash reserves to make up shortfalls but they advised there are no longer any cash reserves available to them.

The NICH have asked for equivalent funding to that provided to Adult Hospices which sees a 50/50 funded model. The NICH is currently funded c30%. The cost of funding a 50/50 model would be in the region of 860k. The NICH advised that to maintain financial stability any funding available would also need to be linked to AFC uplifts to enable the NICH to keep pace with changes in NHS terms and conditions.

In NI, much work has been done on the development of improved paediatric palliative care provision and more will be done by the RPPCN to ensure NI can continue to improve. The network works closely together to ensure that irrespective of where a child lives in NI they can access high quality paediatric palliative care. Members of the network alongside colleagues in my department will continue to examine means to improve paediatric palliative care, including building on the funding that has already been made available.

However, it must be noted that due to ongoing financial and budgetary constraints it will be challenging to identify additional funding at this point.