Scrap council tax for dying people, says national end of life charity
Press release published
- Manchester first council in England to extend support -
Marie Curie, the UKs leading end of life charity, is asking councils in England to scrap council tax for people living with a terminal illness.
The call to action comes after Manchester City Council, working closely with Marie Curie, announced a proposal to change the council's Discretionary Council Tax Policy, to specifically support people diagnosed with a terminal illness who receive Council Tax Support.
Jamie Thunder, Senior Policy Manager for Financial Security at Marie Curie, said:
"We applaud Manchester City Council for recognising that people living with terminal illness need more financial support, including with their council tax.
"The proposed changes will make Manchester the first council in England to offer full council tax exemption for people with a terminal illness.
"This shows there are tools at local authorities' disposal to offer meaningful financial support to people facing poverty at the end of life.
"We now urgently need more councils to adopt a similar approach, to help more people live out their last months, weeks, and days without needing to worry about their bills."
Under the proposal, the council will use an SR1 document, a form issued by clinicians who can confirm a terminal medical condition, to effectively cut council tax entirely for that household, from the date that the form has been issued, until death.
Margaret, who lives in Bolton, has a terminal illness. "I am unable to work, so have much less money coming in than before," she said. "It's bad enough being ill, but we desperately need more support, not only with health issues, but with finances."
Audrey, from Houghton-le-Spring, declared herself bankrupt caring for her terminally ill husband, Eddie, who since died.
"It would have been great to have been council tax exempt when Eddie was first diagnosed," she said.
"It would have been one less bill to worry about. That money could have been spent on other bills like heating, lighting, food or equipment to make Eddie's activities of daily living easier.
"You shouldn't have to worry about money or bills when you are dying. Being council tax exempt would have been one less bill to worry about. It would go a long way to help with other unseen costs when you have a palliative diagnosis."
More than 300 people die in poverty every day in the UK according to Marie Curie's Dying in Poverty 2024 report.
Marie Curie says 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.
However, as budgets have tightened, many councils in England have reduced the amount of support they can offer regarding council tax bills for low-income residents.
Councillor Bev Craig, Leader of Manchester City Council said:
"The moment when you or your family member gets the devasting news of terminal illness is heartbreaking. The last thing you need to worry about money and bills, but we know for too many people it takes up too much time and stress.
"Too many people are living in poverty in our city, and the council is committed to doing all it can to alleviate it in the short term and build ways out of poverty in the long term. That's why we are exempting people with a terminal illness from Council Tax alongside a wider package of support with the cost of living.
"We want to thank Marie Curie for their vital work, and as a council want to do all we can to ease the burden at the end of someone's life."
Marie Curie is asking councils to identify ways they can best use tools already at their disposal, including setting Council Tax Support rates.
Council Tax Support provides a reduction in someone's council tax bill depending on their income and could be used to make people dying of a terminal illness a protected group. People affected by terminal illness could also be given access to the Household Support Fund or other discretionary housing payments.
The charity also says it hopes to create a network where best practice and advice on the needs of people facing terminal illness can be shared to improve local policies and ways of working.
Since December 2022, Marie Curie has supported over 4,000 people with support and information around energy bills and the cost of living. The charity has a free online benefits calculator and dedicated Energy Support Officers who can talk through benefits and support available from energy suppliers, grants, and give energy efficiency updates.
For support visit mariecurie.org.uk or call the free Marie Curie Support Line on 0800 090 2309.
Notes to editor
-ENDS -
For more information please contact: Suzanne van Maurik at suzanne.vanmaurik@mariecurie.co.uk/ 07908 472719. OR contact the Marie Curie Press Office: media@mariecurie.org.uk / 0845 073 8699.
Notes to Editors
Read the full Dying in Poverty 2024 report here: www.mariecurie.org.uk/policy/poverty
*There are four years between datasets. The first report, Dying in Poverty, was based on data from 2019. The second, Dying in Poverty 2024, was based on data from 2023.
Top stats from the report:
• 300 people dying in poverty every single day in the UK
• More than 1 in 5 of all people are dying in fuel poverty – including 110,000 pensioners
• Social tariff could lift as many as 54,000 (45%) dying people out of fuel poverty
• Working age people at higher risk of dying in poverty than pensioners (28% vs 16%)
Please note: Marie Curie is no longer called Marie Curie Cancer Care.
About Marie Curie:
• Marie Curie is the UK's leading end of life charity.
• The charity provides expert end of life care for people with any illness they are likely to die from, and support for their family and friends, in our hospices and where they live. It is the largest charity funder of palliative and end of life care research in the UK, and campaigns to ensure everyone has a good end of life experience. Whatever the illness, we're with you to the end.
• If you're living with a terminal illness or have been affected by dying, death and bereavement, Marie Curie can help. Visit mariecurie.org.uk or call the free Marie Curie Support Line on 0800 090 2309 or email support@mariecurie.org.uk
• Marie Curie have partnered with the UK Gas Distribution Networks to help give people with a terminal illness the support they need to cope with energy costs. Dedicated Energy Support Officers can provide information on support available from energy suppliers, grants and energy efficient updates. Visit www.mariecurie.org.uk/energy for more information.
Everybody living with a terminal illness should be able to spend the last months and days of their life focusing on what really matters: making memories with their loved ones.
Please sign the petition if you agree that the UK Government needs to fix the cost of dying crisis. Marie Curie Campaigns
Our ask of Local Authorities:
Review your Council's Council Tax Support scheme and ensure that households on a low income that include someone living with a terminal illness are adequately supported. Working-age people with a terminal illness should be guaranteed to receive a reduction in their council tax bill.
Ensure your council prioritises applications for discretionary housing payments or other discretionary support schemes, such as the Household Support Fund, for households that include someone living with a terminal illness. Working-age people with a terminal illness should be considered as a priority group and receive financial support with their housing costs, without unnecessary delay or bureaucracy.
Use your leadership role on the Health and Wellbeing Board, to ensure the Joint Strategic Needs Assessments and Health and Wellbeing Strategies outline solutions to minimise winter deaths in line with NG6 guidelines. Council strategies must prioritise those with a terminal illness in their strategies, to minimise winter deaths and the health impacts of cold homes or fuel poverty.
This is a selection of additional expenses associated with terminal illness:
• Heating needing to be on longer and higher to help with symptom management.
• Cooling (using a fan) to help with symptom management.
• Powering at home medical equipment.
• Increased rent - especially if you want to live in an accessible property (less than 10% of homes in England have basic accessibility features!), or a property with an extra bedroom. May also be willing to put up with rent increases to prevent having to move a terminally ill loved one.
• Home adaptations - e.g. stair lift, grab rails, access ramps, hospital style adjustable bed.
• Food - e.g. because a person may only be able to eat certain foods without choking, and/or because sickness and changing tastes means needing to buy more food than previously. May also need to buy food that is easy to prepare - e.g. ready meals or pre-made sandwiches, depending on the availability of care. May also need to have groceries delivered.
• Laundry - more time spent in bed + incontinence.
• Incontinence pads and/or briefs (typically need to be changed 4-6 times a day). If incontinent briefs are approx 75p each (based on a pack of 10 being £8.99), that's £21-£31.50 per week!
• Adaptive clothing - e.g. loose-fitting clothing to accommodate a catheter, easy fasten items.
• Travel to and from appointments - e.g. accessible vehicle + petrol + parking or accessible taxis. Obviously there are greater costs if you live further away from hospital/doctors, and/or if you need to go very regularly (e.g. some people who are on dialysis may need to spend 3-5 hours in hospital 3x a week).
• Childcare - nursery fees, after school clubs, holiday clubs needed if caregiver is unwell and cannot provide full time care (or if caregiver is caring for a terminally ill loved one)
Whatever the illness, wherever you are, Marie Curie is with you to the end.