Ms Averil Power:

On behalf of my colleague, Irish Cancer Society night nursing team leader, Ms Anna Drynan-Gale, and Dr. Suzanne Denieffe, from South East Technological University, I thank committee members for inviting us here today. The Irish Cancer Society’s vision is that one day no one in Ireland will die of cancer, but this vision is not yet a reality. While more people are surviving all the time, cancer is still the single largest cause of death in Ireland, with more than 9,000 people dying each year from the disease.

The majority of people would prefer to die at home. The ICS made that possible for more than 1,900 people with cancer last year by providing a free in-home night nursing service. People who use the service frequently tell us that it meant the world to the person who was dying and their loved ones that they could spend their final nights at home. However, we have also heard from our nurses about very poor living conditions in some of the homes they visit, including inadequate heating. This is particularly concerning because people with cancer patients, as a result of their treatment and condition, are particularly vulnerable to the cold.

We wanted to better understand the extent of this problem and what can be done to address it and, therefore, we funded Dr. Suzanne Denieffe and her team to carry out research, with input from patients, carers, nurses and energy providers. The findings were stark. Only 13% of nurses reported that the homes where they provided support were always adequately warm. One third of nurses had experienced a case where they felt the person they were caring for had to go without heating. Almost one third of nurses reported that a person they had cared for, or their family, had initiated a conversation about energy hardship. Half of the nurses believed someone they had cared for was struggling to make ends meet financially.

The nurses spoke of people living with mould, damp, condensation and draughts. Some stayed in bed because they could not afford to heat more than one room. Others went without heating altogether. One carer spoke about the need to keep the house warm as visitors arrived to spend time with their dying relative. The same person explained that their household costs decreased when their loved one went into hospice care. This left the carer feeling distressed, because on the one had some financial pressure had been relieved but on the other they questioned whether they should have kept the dying person at home for longer. Another carer spoke about hiding energy bills from their loved one so they would not have to worry about them.

In general, there was low awareness or uptake of various existing energy hardship interventions or the possibility of registering as a vulnerable customer on medical grounds. The winter energy credit scheme was widely welcomed. There was a desire for State supports to consider health-based needs, alongside any means-testing applied. Several of the participants mentioned the energy efficiency of their housing and said they were living in old, poorly insulated houses. The cost of upgrades was mentioned as a barrier to changing this.

Overall, this energy hardship report illustrates harsh realities thrust upon people with a life-limiting cancer diagnosis and their families throughout their end-of-life journey. This problem cannot remain hidden behind closed doors. It is a public issue. How we treat and support people at the end of their life, which is such a vulnerable time, says everything about who we are as a society. It is incumbent on policymakers to design a fair system to protect people at the end of their life and their loved ones.

In particular, the Government should provide an automatic entitlement to the household benefits package, fuel allowance payment and additional needs payment to people with a life-limiting cancer diagnosis without means-testing. It should also provide energy credits for the remainder of a person’s life and prioritise households with people receiving palliative care for SEAI grants to reduce waiting times.

To conclude, to think of anybody in their final days not having adequate heating is heartbreaking. To consider that this is a reality in Ireland in 2024 is shocking. Often, conversations around death and dying are necessarily complex and nuanced, but not this one. Our message is simple and irrefutable: everyone should live well at the end of life. No one should spend their final days shivering or wrapped around a hot water bottle because they cannot afford heating or worrying about how their families will pay the bills after they are gone. I thank the committee for giving us the opportunity to lay bare the sad reality that too many families are finding themselves in today and I urge it to work with us to change it.