Debate contribution: Inquiry into Access to Palliative Care Services

Debate contribution by Mr Danny Donnelly on 2 December 2025.

MLA

Mr Danny Donnelly

Party at the time

Alliance Party

Date

2 December 2025

Type

Debate contribution

Business

Committee Business

Heading

Inquiry into Access to Palliative Care Services

Assembly identifier

Official Report component 5272279

Read the official Assembly record

Text

Thank you, Mr Deputy Speaker. It is a privilege to make a winding-up speech on this debate as Deputy Chairperson of the Committee for Health. I thank Members for their contributions on this important issue and the Minister for responding to the motion. I place on record my thanks to the sector and the healthcare professionals who so ably care for the most vulnerable in our communities and provide support to patients and their families in the most difficult of circumstances. We have heard many stories about the impact that your care has had on families for a long time after their loved ones have passed away. Over the past year, we have seen many projects providing much-needed support to patients and families. Last week, when the Committee visited the South West Acute Hospital, we called into the Cancer Focus hub in Enniskillen and heard about the great work that it is doing, including providing support for families. I also pay tribute to the businesses and the public who support our hospices through their donations. Without that support, some of those services would not exist. I also thank the patients and families who have shared with us throughout the process when we have visited hospices, in written submissions and through the lived experience event that we held. Your experiences have shaped the recommendations in the report. I also thank my fellow Committee members and the Committee staff for their work on the inquiry. The report has taken over a year to produce, and it outlines the priority that the Committee gives to the issue. Many issues have been covered in the debate, and I will comment on some of the contributions. The Committee Chair, Philip McGuigan, opened the debate. Diane Dodds noted the assisted dying Bill that is passing through Westminster and thanked the contributors with lived experience and the sector. She noted the inconsistencies in provision across Northern Ireland — something that we heard about time and again. Also, she noted the lack of out-of-hours support, which was also a constant theme in the evidence. She highlighted the fact that hospices are not fully funded to provide specialist services. She highlighted the importance of the recommendations, especially recommendations 1 to 5. My colleague Nuala McAllister noted that the Committee heard from services about how they could be improved, and she highlighted recommendation 9, which is the need for a 24/7 central point of contact, be that a telephone or online service, which would be crucial for families and would make a meaningful difference. She also highlighted the need for swift access to palliative care medications — again, something that was very common across a lot of the evidence. She mentioned speaking to patients and families with experience of palliative care. Alan Chambers spoke about the political unanimity on high-quality care at the end of life and highlighted the uneven access to palliative care, particularly in rural areas, which again was something that we heard about quite a few times. He also highlighted the fact that too many people still associate palliative care with the end of life and miss the fact that it improves the quality of life. Colin McGrath said that palliative care is sustained by extraordinary people but is constrained, and that there are communication issues, particularly due to the lack of support after 5.00 pm. Again, out-of-hours issues came up, as did the fact that the current system unfortunately provides trauma to people long after their loved ones have passed away. Colin highlighted the stark inequalities of support being different across Northern Ireland because of where you live. He highlighted the experience of Anne Sheppard and her husband, which was reported by the BBC today, and I do not think that any of us who heard that would not be moved. Linda Dillon talked to the evidence that was heard, stating that it was powerful and emotional. I agree with Linda. At times, it was very emotional in the Committee. She said that not receiving palliative care is a trauma in itself and that palliative care is not about dying; it is about living with dignity. I agree completely with Linda there. Alan Robinson highlighted a key line in the report and said that palliative care provides a support system for patients to live as fully and as actively as possible until the end of life. He highlighted the need for a clinical lead for palliative care and, in particular, highlighted recommendation 27, which is the need for a new palliative and end-of-life care strategy. He called the inquiry report "a landmark moment", which I agree with. The Minister responded to the debate and thanked the Committee for undertaking the inquiry and, in particular, for the personal testimonies, highlighting that all healthcare is personal and that it will affect many of us and many of the families that we are aware of. He thanked the palliative care workforce and committed to responding in detail in the new year. The Committee will look forward to that.

Thank you, Linda. I agree with the Minister and with Linda. We had many visits to hospices, and we did see that. That is palliative care being done at its very best. The Minister also referred to the Department's ongoing scoping exercise and how that would work in parallel with the report. He highlighted the fact that some of the recommendations have not been costed and pointed out recent improvements in palliative care and end-of-life care. He highlighted the need to look to the future in order to plan for palliative care needs in years to come and reassured us that any concerns that we have about the pace of progress are not due to a lack of focus. The Minister said that a review at a workshop is planned for next month, which was very reassuring to hear. Again, he noted the discrepancy in access to palliative care in rural areas. Finally, the Minister highlighted his visit to the Children's Hospice, stating that he observed joy with the families and the patients in there at that time. I will highlight a couple of issues that could be introduced immediately with little resource. We have heard of the importance of having discussions with our family about our wishes when a terminal diagnosis is given, and we have heard from those with lived experience about the importance of advance care planning and how, at present, there is not enough communication of patients' wishes across the system. We have heard stories of patients having to share their wishes a number of times across different service providers. The Committee had been told that the bulk of the work on advance care planning has been completed, and I ask the Minister to implement that as soon as possible. We heard of the need for a clinical lead for palliative care in the system. The Committee believes that the Minister, the Department and the sector would benefit from the expertise of a clinical lead. That could increase the visibility of palliative care in the system and provide the necessary priority for the issue. The Minister can and should appoint an interim clinical lead as soon as possible. There has been no strategy for adult palliative care since the last strategy ended in 2015. The Department should use the scoping work that it is undertaking and the work of the inquiry to bring forward a cohesive strategy and implementation plan that takes into account the growing need for palliative care. My real concern is that, if we do not build sustainable community services now, in 10 years, we will not have improved access to palliative care services. We spend too much money on unplanned care in Northern Ireland. The Marie Curie report showed that, in 2022, in the last year of life, approximately £350 million is spent on palliative care. Of that £350 million, approximately £195 million is spent on emergency admissions. While I appreciate that patients should be treated in the best place for their care, I do not see how we cannot plan better to provide services in the community and prevent those emergency admissions. It is proven that, when we provide better services in the community, emergency admissions are greatly reduced. Palliative care should be one of the pillars of the Minister's shift-left agenda. Not only does it provide better services and support for patients and families but it is a prime example of providing funding in the community to reduce pressures on our hospitals. The important part is what we do now, and I make it clear to the sector and the Minister that access to palliative care services will remain a priority for the Committee. We are happy to work with Minister and the Department on taking forward the recommendations to achieve real progress for patients and families and to build a sustainable sector that is able to meet the needs of our communities. I commend the report to the House.

1,499 words. Text as published by the Northern Ireland Assembly.

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