Energy safeguarding and tackling fuel poverty for terminally ill people

Energy safeguarding and tackling fuel poverty for terminally ill people

Why we’re working together

Thousands of people living with a terminal illness rely on home medical devices, such as ventilators and dialysis machines. This equipment plays a vital role in preserving people’s health, comfort and dignity towards the end of their life.

With this comes an increase in energy bills. Recent Marie Curie research shows that a terminally ill person’s energy bill can increase by as much as 75% over what they were paying before they were diagnosed. As a result, people diagnosed with a terminal illness are disproportionately at risk of falling into fuel poverty.

Together, we’re supporting terminally ill people and their families across Britain who are in fuel poverty with dedicated support and advice services.

In 2024, Marie Curie’s ‘Dying in Poverty’ report, based on research by Loughborough University, revealed a deeply concerning analysis of how many people are dying in fuel poverty – at least 128,000 each year. That’s more than one in five of all people who die and includes 110,000 pensioners. Last winter, as many as 44,000 terminally ill pensioners lost their Winter Fuel Payment.

How we’re working together

We’ve established an energy advice service as part of Marie Curie’s Information and Support Line. Dedicated Energy Support Officers (ESOs) help terminally ill people access financial support to address the underlying causes of fuel poverty. The ESOs have also trained the wider adviser team on dealing with energy-related issues and providing benefit and income maximisation checks.

We’ve raised awareness of this service through targeted multi-channel marketing campaigns. Our social media activity has generated over 188,000 views and we’ve also issued over 30,000 leaflets through Marie Curie charity shops.

Another integral part of our partnership is our co-designed training package for Marie Curie’s community nurses, healthcare assistants and volunteers. This bespoke training helps frontline teams spot signs of a household in fuel poverty and empowers them to refer patients for further support.

Partnership and community impact

Since December 2022, our partnership has helped 5,884 people with support and information around energy bills and maximising household incomes via our dedicated ESOs.

We’ve carried out benefits checks for 15,685 households, helping customers identify an average of £185 per month in unclaimed benefits. Collectively, we’ve identified more than £2.9 million worth of benefits for people living with a terminal illness.

For Marie Curie’s frontline teams, training on energy advice and fuel poverty awareness enables them to help people at end of life with access to tailored support that helps bring peace of mind and tangible financial benefits that help maintain a warm home.

This year we’ve trained 865 frontline Marie Curie nurses, clinical staff and volunteers, taking the total to 1,595 trained since 2022.

Stakeholder support

For many people with a terminal illness, their deteriorating health often means spending more to heat their homes. This significant increased cost is coming at a time when their income is likely depleted.

After receiving a terminal diagnosis, people shouldn’t have to worry about whether they can afford to keep their home warm, but it’s a stark reality for many.

Since co-design and throughout delivery, this partnership has been supported by stakeholders at both network and national level. It has been recognised as an industry-leading initiative within both the utility and charity sectors, and we’ve shared our approach at national conferences for cross-sector learning.

Evaluation and learning

Our monthly data experiences less seasonality than we might expect, showing us that fuel poverty remains a worry for people all year round, especially in the present economic landscape.

There is great demand among people living with a terminal illness for trusted information on energy and benefits. We’re seeing this not just through calls to the Marie Curie advice line, but through the amount of people accessing their online resources. This year alone, there have been 24,220 visitors to the energy advice pages on the Marie Curie website.

As our programme matures, we’ve identified opportunities to refine its delivery. For example, when palliative care nurses visit patients at home overnight, it’s not always possible to have conversations with households about the PSR as the patient and family are asleep. Recognising a gap in our engagement, Marie Curie has developed bespoke resources to leave with families to make sure they still receive this information, alongside a ‘quick guide’ for nurses on how to verbally communicate the key value proposition of the PSR when handing it over, to ensure the interaction retains high value.