Marie Curie, which marked its 75th anniversary of providing expert care and support for dying people last week, welcomed input from Delyth Jewell MS, who is joining their calls and will raise the issue.
Calling for the addition of terminal illness to eligibility criteria for warm homes support, Marie Curie Senior Policy and Research Manager, Natasha Wynne, said: “Most people say that if they had a terminal illness, as far as possible they would prefer to be cared for and to die at home.
The sad reality is that as energy costs have sky-rocketed and cost of living pressures intensified over recent years, keeping warm at home has become a real struggle for many, and home may not be a comfortable or safe place.
“The new Warm Homes Programme is Welsh Government’s primary mechanism to address fuel poverty in Wales.
The previous scheme had special health-related eligibility criteria for people with a recognised circulatory, respiratory or mental health condition.
Welsh Government must now extend this so that people with any terminal illness are explicitly included, to ensure that those most at risk of the ill effects of fuel poverty do not face additional barriers to accessing support.”
A January 2023 survey of Marie Curie staff in Wales found that the vast majority (94%), have cared for patients struggling financially, and that affording energy bills is the most common financial difficulty they see among patients. Nearly all (94%) expressed concerns that patients would not be able to afford to keep their homes warm over winter.
Struggling to meet the extra costs of living with a terminal illness can have a severe impact on people’s physical health, with 23% of Marie Curie staff in Wales saying that in their opinion, financial insecurity hastened the deterioration of their patients’ conditions.
Marie Curie also found through a survey, conducted by Opinium, that the majority of people (74%) in Wales would struggle to pay their energy bills if they were diagnosed with a terminal illness and unable to work.
Sam Skelton, from Caerleon, has lung, lymph, pleura and spinal cancer and when diagnosed in 2021 was told she most likely had two years to live.
“As far as heating is concerned we racked up an enormous energy bill for last winter and I did really struggle to keep warm,” she said.
“I bought an electric blanket as it was cheaper to use than putting the heating on all the time but then was forced to be more sedentary to stay under the blanket. It’s a vicious cycle remaining still under an electric blanket to keep warm, because if I was able to be more active, in a suitably warm environment, then I wouldn’t feel so cold all the time!
“We currently have a big deficit on our energy bill which we are hoping will decline slowly over summer (with less use) but we will be going into the coming winter already in debt as far as the bills are concerned.
“Struggling to afford heating is definitely not something that someone at the end of their life should be worrying about. I wonder about those less fortunate than I am and how much the worry about bills and actual cold influences their health outcomes. It doesn’t seem much of a civilised society that neglects to prioritise the warmth and wellbeing of their most vulnerable really, does it?”
Marie Curie Cymru Medical Director, Dr Jo Hayes, says experiences like Sam’s are not uncommon for people with any terminal illness – not just those related to respiratory conditions, which are included in special health eligibility criteria under the current programme.
She said: “Dying people are some of the most vulnerable to the health and wellbeing consequences of cold and poor housing. Terminal illness and fuel poverty exist in a vicious cycle: deteriorating health often means reduced mobility and activity, slowing body heat generation and conservation.
“The toll of terminal illness on physical health therefore has a direct impact on heating bills – and the consequences of struggling to meet increased costs can be severe.
Cold and damp homes aggravate physical symptoms, worsen infections and affect mental wellbeing. With end of life care shifting increasingly out of hospitals and into the community, we must do all we can to ensure that dying at home means dying in comfort and with dignity, not being left out in the cold.”
Delyth Jewell, MS for South Wales East, said: “Supporting people when they’re at their most vulnerable is vitally important – we shouldn’t be putting extra pressures on people who are already going through a desperately difficult time. I’m looking forward to raising this in the Senedd and hope that urgent support can be made available.”
If you have a terminal illness and are struggling with bills, Marie Curie’s Information and Support Line has trained energy support officers you can speak to. Call 0800 090 2309.
The Cost of Living: A survey of Marie Curie Caring Services Staff
To better understand how the cost-of-living crisis is affecting families affected by terminal illness, and how this has changed across 2022, Marie Curie conducted a survey of its Caring Services workforce in December 2022 and January 2023:
335 responses from Marie Curie Caring Services staff across the four UK nations and from different health professions, with the number of responses in each nation as follows: England – 160, Wales – 53, Scotland – 63, Northern Ireland – 59.
Respondents were predominantly Healthcare Assistants, Registered Nurses, Doctors, Social Workers, and other Allied Healthcare professionals.
About Marie Curie - http://mariecurie.org.uk
Marie Curie is the UK’s leading end of life charity. The charity provides essential nursing and hospice care for people with any terminal illness, a free support line and a wealth of information and support on all aspects of dying, death, and bereavement.
It is the largest charity funder of palliative and end of life care research in the UK.
Marie Curie is committed to sharing its expertise to improve quality of care and ensuring that everyone has a good end of life experience. Marie Curie is calling for recognition and sustainable funding of end-of-life care and bereavement support.
Marie Curie Support Line 0800 090 2309*
Marie Curie trained Support Line Officers can provide practical information on everything from managing day-to-day with a terminal illness, to planning for end of life. Our support line can offer emotional support if someone needs a safe space to talk, or some guidance based on their situation. We have a dedicated bereavement service where callers will be paired with a volunteer, who can offer a listening ear and support over six sessions, as well as Check-in and Chat, a service that offers regular calls at a time that suits you. *Calls are free from landlines and mobile phones.
Marie Curie’s 75th Anniversary
Founded in 1948, this year Marie Curie is celebrating its 75th anniversary. Over the last 75 years Marie Curie has been there for millions of people affected by terminal illness and those dealing with dying, death, and bereavement.
Last year 46,000 people were cared for by Marie Curie Doctors, Nurses and Healthcare Assistants and around 1.2 million people accessed our information and support services.