Not enough financial protection in place for dying people, all-party parliamentary group finds

       Calls on government to improve financial support for people at the end of life

• A terminal illness often leads to dramatic income loss, especially for working age people and their families, who may also see carers forced to reduce paid employment.
• The extra costs of terminal illness—such as increased energy bills, specialist food, travel to appointments, and social care—can amount to tens of thousands of pounds.
• Current government support is insufficient and complex, with terminally ill people receiving significantly less than those above pension age and facing gaps in benefit provision.
• Charities have been left to fill critical gaps in statutory support, but soaring demand and shrinking funds mean this is no longer sustainable.

Dying people urgently need more support to deal with the spiralling costs of their conditions, according to an inquiry commissioned by the All-Party Parliamentary Group (APPG) for Hospice and End of Life Care.

The inquiry heard evidence of the impact of the lack of financial support on people living with a terminal illness and their carers, including a testimony about a young woman unable to access treatment that could have prolonged her life due to difficulties meeting transport and childcare costs. This isn't a standalone story, with more than 300 people dying in poverty every day in the UK, according to Marie Curie's Dying in Poverty 2024 report.

The APPG held three evidence sessions in the House of Commons, and received evidence from a wide range of charities, professionals who work with terminally ill people, and people with lived experience of terminal illness or caring for someone at the end of life.

Evidence gathered through the inquiry showed that the cost of powering at-home medical devices, having the heating on longer and higher to help with symptom management, along with a number of other expenses associated with terminal illness, can all add up to unsurmountable pressures for affected households.

Paulette Hamilton, MP, Co-Chair said: "People and their families dealing with terminal illness should be able to be safe in the knowledge that their needs are met; and this includes their financial needs.

"We are urging the government to carefully consider this report, and to take the practical, and very necessary steps we've outlined to ensure that spending time together is the main focus; not bank balances."

Baroness Finlay of Llandaff, Co-Chair, said: "We have heard many moving, and incredibly powerful stories from those giving evidence as part of this report, including frontline palliative care professionals, charities and like-minded organisations, and those with lived experience of terminal illness.

"We look forward to working closely with government to ensure that we honour these stories and create a system where the plight of dying people is at the heart of health care strategies and legislation."

Government is urged to take steps to close the gap in support between working-age and pension-age people, using opportunities like the upcoming Pension Commission to extend access to the State Pension to people who will otherwise die too soon to receive the entitlement their hard work and National Insurance Contributions would have given them.

The APPG is also calling on government to put other support measures on place, including introducing a social tariff for energy, and increasing Universal Credit for people facing terminal conditions. It also advises for the state pension should be made available earlier to working age dying people, and that a simple scheme should be set up to provide up-front help with the cost of running medical equipment provided by the NHS.

Toby North, Head of Public Affairs at Marie Curie, said: "Too many people are dying in avoidable pain, in poverty and alone. As our population ages and a greater number of people die each year, the need for end of life care will rise by 10 per cent, compared to today. More and more people and their families affected by terminal illness will also be unable to cope with the rising costs.

"Dying people shouldn't have to worry about whether they can afford their heating bill, or be able to get the medical equipment they so desperately need. Urgent action needs to be taken to families can spend their last precious moments, together.

Dr Paul Perkins, Chief Medical Director at Sue Ryder: "When we are supporting patients and families, we do all we can to address their medical and emotional needs but sadly, there is a big financial component to living with long-term and terminal illness.

"While hospices do all they can to help people access the financial support that is available, the evidence in this report shows that the existing support falls short.

"It is heart breaking to see the stress patients and families feel while worrying how to make ends meet. Cold homes in winter, overheating in summer, expensive medical equipment that people struggle to afford all impact people's quality of life but also have the potential to shorten their life.

"While us doctors might not be able to administer financial interventions, this report does offer practical ways for the Government to step in and make life easier for people approaching the end, which would make a big difference."

Katie Reade, Head of Policy and Public Affairs at Hospice UK, said: "A terminal diagnosis should never cause financial hardship. The end of life should be a time of peace and stability, yet too often people and their families face spiralling costs on top of the emotional and physical impact of illness.

"This inquiry has highlighted the additional pressures people experience, from higher energy bills for medical equipment to the cost of travel for appointments and paying for social care. The current system does not provide enough protection, leaving too many families struggling.

"To truly give people a good death, their financial and social needs must be treated as seriously as their clinical ones. Government and local health systems have a responsibility to act, by taking practical steps to reduce costs and increase support so that no one spends their final months in avoidable financial hardship."

The report was launched in Parliament on Tuesday 9 September to a group of MPs and peers. It has also been sent to government departments demanding urgent action to support people with a terminal illness and their loved ones.

ENDS