National shame of terminally-ill people unable to afford their heating bills - Matthew Reed

Anyone can experience fuel poverty, but people living with a terminal illness, like advanced cancer, dementia and chronic lung diseases, are among the most vulnerable, and the consequences of cold housing can be devastating for their health.

Their deteriorating condition means they are more likely to feel the cold, leading to higher heating bills, and this comes at the same time when they may be out of work and facing significant extra costs for things like equipment, home adaptions and travel bills.

Our new report on fuel poverty found that cold housing can make existing conditions worse, and in some cases even kill people quicker. Cold environments are breeding grounds for damp and mould, which make infections more likely.

This may have a relatively minor effect on a healthy person, but for someone who is terminally ill, and whose immune system is already weakened, the impact can be severe.

As part of the report, we spoke to Gillian, who is living with a terminal illness. She told us that the cold conditions she is living in make her at risk of developing clots that could lead to complications such as a heart attack or stroke. That can’t be right.

Cold housing can also trigger symptoms like pain and heighten the risk of mental ill-health – including depression, anxiety and loneliness. It is a vicious cycle, and in the worst cases, the impact may even be fatal. Shockingly, analysis from Marie Curie shows that, between the winters of 2014 and 2019, there were nearly 10,900 excess deaths from dementia in England and Wales that can be attributed to cold housing.

I recently spoke to one of our frontline nurses who has had to heat up rice packets and put them in patients’ pillowcases to help them stay warm. Another Marie Curie nurse described how they had been reduced to tears after visiting a dying patient who couldn’t afford their heating bill. And a terminally ill woman told us about the choice she has had to make between heating her house or buying food.

As a society, we ought to be ashamed that vulnerable people are spending the end of their lives in these conditions. Heating is an essential, not a luxury.

Marie Curie is calling for fundamental changes to the welfare system, in order to make it quicker and easier for dying people to get the financial support they need. A good place to start would be to scrap the out-of-date six-month rule in social security law as it denies dying people fast-track access to the benefits they need if they are can’t prove they have six months, or less, to live.

The five-week wait for Universal Credit is resulting in destitution, so in the long-term we would like to see this abolished for terminally ill people. In the short-term, repayable advance payments for those who don’t have enough to live on while they wait for their first payment should be changed to non-repayment grants.

The eligibility criteria for existing heating support programmes are not sufficiently targeted and focus on age more than need. For instance, only those aged 65-plus are eligible for Winter Fuel Payments, and while this key scheme is undoubtedly helping many, it excludes younger people who could benefit from support.

To take just one example, average energy bills for people with motor neurone disease have been found to almost double after diagnosis, and the condition affects people of all ages, but many younger people with the condition wouldn’t be eligible for Winter Fuel Payments.

Adding an additional vulnerability component to the eligibility rules would help to support people of all ages with a terminal illness who are at risk of being fuel poor. Similarly, access to the Warm Home Discount scheme should be automatic for those diagnosed with terminal conditions.

Elsewhere, we need to see greater implementation of national guidance on excess winter deaths and cold housing. The National Institute for Health and Care Excellence (NICE) has provided a framework for vulnerable patients, but implementation is patchy.

After receiving a terminal diagnosis, people should be able to concentrate on the things that matter, making the most of the time they have left and creating new memories with loved ones.

It is unacceptable that any dying person should spend the end of their lives in cold, damp conditions, so we are calling for a cross-sector approach – with government, the community and voluntary sector and health and social care bodies working together – to help tackle the scourge of fuel poverty among terminally ill people in the UK.

Matthew Reed is chief executive of Marie Curie.

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