A new report from end-of-life charity Marie Curie has found households in England affected by terminal illness have seen their energy bills rise by as much as 75 per cent.
The report’s findings come as the forecasting group Cornwall Insight predicts energy costs will stay historically elevated until at least late 2024 and as government schemes to support people with higher energy bills expire.
A significant part of the increased costs for terminally ill people’s bills is accounted for, in many cases, by the medical devices they need to survive.
Helena Reynolds, who is terminally ill with Crohn’s disease, has seen her energy bills rise from £75 to £200 a month. She says she lives in fear she will no longer be able to run the medical device that keeps her alive – a Total Parenteral Nutrition (TPN) machine.
“I’m constantly watching the smart meter,” she says. “The TPN needs charging for 12 hours a day. If the battery dies then I die.”
The cost of running an oxygen concentrator can be £65 per month, a dialysis machine £27 per month and a ventilator £35 per month, according to research by the charity.
However, the exact number of terminally ill people affected by the increase in energy costs is unclear because of a “concerning lack of data” held by NHS Trusts on the number of their patients using at-home medical devices, a Marie Curie spokesperson says.
Only 23 per cent of NHS Trusts in England were able to provide even partial data on how many of their patients used common medical devices at home.
At the lowest estimate, last year in England and Wales nearly 150,000 people died at home from conditions whose treatment required at least one common medical device.
This does not account for those who move into hospitals or hospices for end-of-life care. Six hundred thousand people die every year in the UK with palliative care needs.
The researchers also found that homes are cutting down on other expenses, like food, to be able to keep equipment running.
“Because of my illness, I am supposed to eat rich food like cream and full-fat milk so my body gets the calories it needs,” Reynolds says. “Often I can’t afford them so go without.”.
In a survey conducted by the charity earlier this year, 84 per cent of its nurses and healthcare assistants said they cared for dying people who were struggling with the cost of energy in 2022.
Despite these increased costs, there is no targeted payment scheme available from government specifically help pay for the increased cost of at-home end-of-life care – a significant concern for affected households as winter approaches with bills predicted to remain at historic highs without the help of the expired Energy Bill Support Scheme and Energy Price Guarantee.
At the same time, the eligibility requirements for other schemes including the Warm Home Discount and Household Support Fund mean many people with a terminal illness may find they are unable to receive payments.
University College London and the Institute of Health Equity estimate that as many as 21.5 per cent of excess winter deaths are directly attributable to cold homes. Many of these are likely to have been people living with pre-existing terminal illnesses, the charity says.
Existing rebate schemes to help with energy costs are restricted to oxygen concentrators and dialysis machines. They don’t cover devices like Reynolds’ TPN or electric beds to help with mobility.
“Because some of those rebate schemes don’t apply to every device and they’re not always implemented properly, you do have a situation where people are effectively paying out of pocket for the cost of their own care”, Mark Jackson, Marie Curie Senior Research and Policy Manager, told Tortoise.
In the report, Marie Curie urges the Department for Health and Social Care to improve and extend the rebate schemes for terminally ill patients as well as work to improve reporting on how many people require medical devices.
The charity is also recommending that the Department for Energy Security and Net Zero and Ofgem should consider the introduction of a social tariff on energy prices for vulnerable groups.
The Department of Health and Social Care was approached for comment.
Photograph courtesy Marie Curie