Report warns patients receiving palliative care at home are suffering energy hardship
In a survey of nurses, only 13% reported that the homes where they provided support were adequately warm. One-third of nurses had experienced a case where they felt the person they were caring for had to go without heating.
Patients receiving palliative care at home must be designated as “extremely vulnerable customers” to ensure their energy supplier cannot disconnect them for any reason, a new report has urged.
They must also be prioritised to have their home retrofitted, it said, after nurses reported many of their patients living in damp, mouldy and cold homes.
The paper — funded by the Irish Cancer Society and compiled by researchers led by Dr Suzanne Denieffe from the South East Technological University — provides a stark picture of the situation facing those in palliative care at home in terms of energy hardship.
Such hardship was defined as living in a house with a poor energy efficiency rating, having a low household income and dealing with high energy prices.
“Our primary research found that energy hardship was recognised — by nurses, family carers, and those receiving care — as an issue where people receiving palliative care at home have specific needs and potential vulnerabilities, due to a range of interlinked factors,” it said.
“[Our] data powerfully illustrated the negative impacts of energy hardship on the lives of both those receiving palliative care at home, and their families.”
In interviews with five people receiving palliative home care and three family carers, they all pointed to the mental and physical impacts of struggling with energy hardship.
One family carer told the study: “I think people need to know what it is like when you are really stressed trying to pay bills and trying to cope and care for your relative at home.
“I was really stressed in the months before [their relative] died — I ended up not sleeping and had to get sleeping tablets from my GP. A lot of this stress was financial.”
Due to illness, treatment or their caring role, the interviewees said they spent more time at home so felt the cold more. It means they had to keep the house warmer for longer, which led to an increased cost regardless of what fuel was used.
Another family carer said: “[Their relative] would have hated anyone knowing we were struggling. I ended up not even telling [them] the full story of what we owed — I didn’t want to upset them. I am still in that payment plan.”
In a survey of nurses, only 13% 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.
The report makes a slew of recommendations to support those receiving palliative care at home.
It said: “Frontline staff dealing with palliative care patients should receive awareness training on energy hardship and interventions.
“The criteria for extremely vulnerable customers should be extended to cover those who need a warm home environment for medical reasons, including those with palliative care needs being cared for at home.”
It added that those receiving palliative care should be encouraged to register as medically vulnerable with their energy provider, while those living in a house with a low BER should be able to seek prioritisation from their local authority or from the SEAI for assessment and retrofitting.
