Debate contribution: State Pension Access: Terminally Ill People

Debate contribution by Ms Sian Mulholland on 31 March 2025.

MLA

Ms Sian Mulholland

Party at the time

Alliance Party

Date

31 March 2025

Type

Debate contribution

Business

Private Members' Business

Heading

State Pension Access: Terminally Ill People

Assembly identifier

Official Report component 4872106

Read the official Assembly record

Text

The reality is that, for far too many people in Northern Ireland who are diagnosed with a terminal illness before they reach pension age, not just the emotional burden of dying but the financial burden of dying in poverty are difficult. It affects not just them. It affects their families, their unpaid carers, their partners, their siblings and their children. It affects the people who are left behind with not just grief but debt and no safety net. For the families of those who are at the end of life, it is not about making ends meet but about making it to the end without fear, shame and hardship. A few weeks ago, a woman came into one of my constituency surgeries. Her husband had recently died. He was just 45 years old. He had been diagnosed with a terminal illness and wanted to spend his final few days at home surrounded by his family and friends. When she spoke to me, what she remembered most clearly was not the last hug, the final conversation or even the goodbye, it was the bills. She said to me, "We were prepared for the grief. We were not prepared for the cost". They were not deciding how to live well in those final, precious months; they were deciding whether to stay warm or to have dinner. She told me that there were nights when she genuinely wondered whether it would be better for him to be in the hospital, which would be clinical and unfamiliar but at least warm and lit, or at home, surrounded by love but sitting in the cold and dark. What a choice. Many of us in the Chamber are uncomfortable with reducing people to statistics, especially and rightly so when we talk about our friends or members of our community who are terminally ill, but we have to face what the data is telling us. In 2023, we had 800 working-age people in Northern Ireland die in poverty, which is nearly one in four. It is getting worse. Since 2019, the proportion of people who are dying in poverty has increased by almost 7%. Then there is fuel poverty. In 2022, again, the figure for people who were living in fuel poverty was nearly one in four. We know what that looks like. It means that there are people who are often housebound, in pain and using electricity-dependent medical equipment while being unable to stay warm. Their illness increases their need for heat but also wipes out their income. It is a vicious cycle and a cruel one at that. The ways that we pay for heat in Northern Ireland make it worse, with 47% of homes being on electricity prepayment meters and 69% using prepayable gas. That means that, if you cannot afford a top-up, you go without. It is as simple as that, and that is brutal. Self-disconnection is so real. People are living and dying in cold, dark homes not because they want to but because our system does not protect them. That has consequences. Cold homes make pain worse, increase the risk of infections, affect people's mental health and, in the worst cases, hasten death. If people had the dignity and support to die at home, warm and cared for, we would not be asking the NHS to pick up the costs of a crisis that we could have prevented. That is what brings us to the motion. We support the motion, which is on something that is so simple and fair, and we thank the Member for proposing it.

We ask that working-age people who are terminally ill be allowed to access their state pension early, by which we mean not months down the line or after endless form-filling and delays but immediately, when they are told that they are dying. If we could provide financial security when it is needed most, if we could allow families to focus on caring instead of on coping and if we could focus on ending the injustice of people dying in poverty simply because they become ill before they reach a certain age, would that not be something? We are aware that social security is devolved and that Northern Ireland follows the principle of parity with Westminster, sometimes frustratingly. That is why we call on the Minister to engage directly with the Department for Work and Pensions to push for those changes, which are so greatly needed. Marie Curie's most recent report, to which Mrs Dillon referred, confirms what we already know about the reality: poverty at the end of life is more common now than it was in 2019, while fuel poverty is even more common. Those who are most likely to die in poverty are disabled, female, from a minoritised ethnic background or living in insecure housing. Working-age benefits are already falling short. If the Labour Government proceed with the cuts that they have outlined, terminally ill people could be even more exposed. We know that we have strategies coming. We are waiting on the anti-poverty strategy and on the fuel poverty strategy, both of which are long overdue, but they cannot ignore the people who are dying. Their needs are urgent and their time is limited, and, too often, they are invisible in policy conversations. Let us be clear: working people who are dying should not be penalised just because they get sick before they reach pension age. It is a matter of compassion. We say clearly that we will not look away. We believe in dignity in death. We support the motion.

931 words. Text as published by the Northern Ireland Assembly.

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