Debate contribution: Inquiry into Access to Palliative Care Services

Debate contribution by Mr Philip McGuigan on 2 December 2025.

MLA

Mr Philip McGuigan

Party at the time

Sinn Féin

Date

2 December 2025

Type

Debate contribution

Business

Committee Business

Heading

Inquiry into Access to Palliative Care Services

Assembly identifier

Official Report component 5271873

Read the official Assembly record

Text

As Chairperson of the Committee for Health, I welcome the opportunity to speak to the Committee's report on its inquiry into access to palliative care services in the North. I look forward to hearing the contributions to the debate. We also look forward to hearing from the Minister, and we will listen carefully to how he engages today on the report's findings and recommendations. I begin by acknowledging the presence in the Public Gallery of professionals from the palliative and end-of-life care sector, as well as those with experience of being a patient requiring palliative care and families and carers who have provided palliative care to loved ones. Later this afternoon, the Committee will host an event to thank the sector and those with lived experience who have contributed to the inquiry's findings. I hope that the event will be well attended. Those who attend the event will watch a video in which a family member of a patient describes the care that is given by the hospice as "beyond special". That was the experience of Committee members when we visited each of the hospices. The quality of care and the services that are provided by the sector, through patient and community services, is something that we should all be proud of. Early in the inquiry, the Committee learned that the sector has an exceptionally skilled workforce, in statutory and community settings across the North, who have a passion to keep improving access to high-quality care services for patients and families. Not only does the sector understand the challenges facing services, but it has many of the solutions to those challenges. It is, however, facing barriers to effecting the change that is needed and required. The Committee intends that its report will shine a spotlight on that area of the healthcare system and that it will, hopefully, greatly assist the Minister, the Department and the relevant arm's-length bodies in meeting our shared goals of high-quality care and outcomes for patients and their families and carers. The World Health Organization states:

"Palliative care is explicitly recognized under the human right to health. It should be provided through person-centered and integrated health services that pay special attention to the specific needs and preferences of individuals."

It states that palliative and end-of-life care:

"is an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness."

It is important to note that palliative care is not just for older people. Many of those who are terminally ill leave behind young families. Paediatric palliative care services see families from before the child's birth right up until they are 18 years of age. When a child and family receive that diagnosis, palliative care aims to improve quality of life, to support families emotionally and practically and to help children to live as well and for as long as possible. It is a long-term, holistic approach that is not just about the final stage. Nothing sums that up better than a quote from the evidence that the Committee heard when members were told:

"To know that the person you love died peacefully with comfort and dignity and that you had the opportunity to tell them that you loved them and say goodbye properly helps to ease the rawness of bereavement".

Good palliative care allows the bereaved to recover sooner and continue living their lives without crippling memories of unnecessary suffering. That is an important statement because, when there has been a gap in the patient's care or a barrier to accessing proper and timely palliative and end-of-life care, the effects are disastrous for the patient as well as for the families and the carers and key workers who were involved with the patient. Palliative care is unique. We have only one chance to get it right for a patient and their loved ones at a time in their life when they are at their most vulnerable. The Committee's 27 recommendations provide the overall steps that are required for us to get this vital service in our health service right. Palliative care is key to bringing about a more efficient and effective system for healthcare, and the Committee hopes that the Minister will today acknowledge the importance of prioritising palliative care services. We are already working to an underestimated need for palliative care. The Office for National Statistics projects that we will experience the largest proportional increase on these islands in the number of deaths that require palliative care, with a 32% rise expected between 2023 and 2048. That outlines the need to increase the focus that has been placed on palliative care and put the correct structures in place that will ensure that, as demand for palliative care increases, the systems are in place to be able to provide patients and families with the holistic care that is needed. I want to touch briefly on the key themes of the evidence that we heard and some of our recommendations. Universal access to palliative and end-of-life care is a recurring theme as is our call for a legal right to palliative care. It was acknowledged that legislation alone would not solve all challenges but would raise the profile of palliative care, ensure consistent commissioning across trusts and help to secure equitable access. Another constant theme was hospice funding. Our hospices face constant financial instability and risk, which prevents meaningful development and growth. Without multi-year budgets and long-term planning, meaningful service development is impossible, leaving clinical needs unmet and communities underserved. For inpatient services, we need an immediate move away from the long-standing practice of providing 50% funding on the basis of the cost of a general medical bed in a hospital. What hospices provide, in their inpatient services, is specialist multidisciplinary care, and we are doing staff and patients a disservice by continuing the current practice. In their evidence, departmental officials highlighted the fact that it is difficult to assess the cost of providing specialist care. However, the Committee did receive correspondence from the Department that provided information on the cost of providing specialist care in a fully funded trust service, which was significantly greater than the amounts that are provided for hospices and inpatient services. While we need to consolidate and build inpatient services, the Committee has significant concerns about community services that are provided through hospices and trusts. The Committee held an event in June with the Voices4Care group and other family members who had lost loved ones who had received palliative care. The Committee was concerned to hear the lived experience of families, who, at times, struggled to get support and were told to take their loved ones to emergency departments to wait for treatment. Those families had to drive for hours in their loved ones' last days to find urgent medication. We must do better. The sector is innovating, and the Committee saw some really good examples of community care, including out-of-hours nursing support, just-in-case boxes and 24/7 telephone support. However, such community care exists only in certain areas of the North, which results in inequity of access for patients and families. That inequity exists in rural areas in particular. The Committee believes that immediate investment in palliative and end-of-life care is necessary. There is a significant gap in out-of-hours palliative care services, particularly for symptom management. That lack of service can be a barrier to patients returning home, and the absence of 24-hour care makes it difficult for patients to receive timely support. Community and palliative pharmacy play a critical role in keeping the patient stabilised in their home and in the hospital setting, especially at the point of discharge. It is important that those functions are adequately resourced to support patients. General palliative care is provided predominantly by GPs and district nurses. That service is undervalued and under-resourced, and it is not meeting the public's expectations. Specialist palliative care by multidisciplinary teams is an essential healthcare service that should be fully funded through Health and Social Care. It has been underfunded for a prolonged period. There is a critical need for investment in the community specialist palliative care workforce. As more individuals choose to receive care at home, there is an urgent demand for a sustainable, multidisciplinary, community-based workforce. The current strategy for paediatric palliative care is not adequately funded. As I conclude, I place on record my thanks to those in the sector who so willingly engaged with the Committee, including the hospices in the North, Hospice UK and the All Ireland Institute of Hospice and Palliative Care. I thank all the organisations, health professionals and individuals who provided valuable evidence to the Committee as it considered this important issue. I thank the Committee Clerk and his staff for their valuable assistance and contribution throughout the inquiry process in organising and managing the sessions and, in particular, for collating the evidence and drafting and redrafting the report. I also thank my fellow Committee MLAs for their considerable and considerate consideration of the issue. I thank the Minister, permanent secretary and departmental officials for engaging with the Committee over the past year. Lastly, I pay tribute to those who shared their lived experience with the Committee, including individuals receiving palliative care and families who have lost loved ones. That cannot have been easy for them, but I want them to know how important their contribution and testimony was to the Committee: your experiences have, hopefully, shaped our inquiry report for the better. A report that hopefully, but —

— more importantly, can be a blueprint or a road map for doing things better.

1,604 words. Text as published by the Northern Ireland Assembly.

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