A cross-party group of MPs is calling for evidence for an inquiry into the effects of unsuitable housing and fuel poverty on the care and support people receive at the end of life.
More than two-thirds of people say they would prefer to die at home, and dying at home is often used as an indicator that someone has had a ‘good death’. This inquiry, from the All-Party Parliamentary Group (APPG) for Terminal Illness, will explore the extent to which the experience of living in unsuitable housing, including the experience of fuel poverty, affect people living with terminal illness, their families and carers, and whether it impacts someone’s ability to die at home if that is their wish.
The APPG is seeking evidence from individuals and organisations with expertise in fuel poverty, housing and homelessness issues, as well as those that work with people experiencing poverty, health and social care providers and people who have experienced terminal illness and bereavement.
The APPG’s work follows its previous inquiry, which found that inadequate income can lead to considerable financial strain, stress, anxiety and health impacts on people at the end of life, and a report on fuel poverty by the end of life charity, Marie Curie, which concluded that the impact of fuel poverty could hasten the death of some people with a terminal illness.
The period of consultation will run until Friday, 2 April 2021.
All evidence and insight provided will support the APPG to give government, policymakers, and providers recommendations to improve the end-of-life experience of people living with terminal illness.
Drew Hendry MP, Chair of the All-Party Parliamentary Group (APPG) for Terminal Illness, said:
“The pandemic has shown us, in many ways, the negative impact poverty can have on health, well-being and mortality. However, the unequal outcomes faced by people experiencing poverty predate coronavirus. Many people have to make the tough decisions around whether to eat tonight or heat their homes, the struggle to pay rent, or the challenges of living in poor quality housing do not disappear when they become terminally ill. Sadly, these challenges only become harder, and for many, it brings about their death more quickly.
“This inquiry will seek to make strong recommendations to ensure that more people get the care and support they need when they are at their most vulnerable. Our system of health and social care must support all people from the cradle to the grave regardless of where they live, and furthermore, must do more to support the most in need.”
Mark Jackson, Policy and Public Affairs Manager at the end of life charity, Marie Curie, said:
“Most of us would hope for a peaceful end to our lives, surrounded by the people we love, in a place we feel most comfortable. Sadly, for too many people, the assumptions we make that dying at home is ‘a good death’ couldn’t be further from the truth. People with terminal illnesses are some of the most vulnerable people in our communities, and when you combine that with experiencing poverty and living in unsuitable housing – or indeed no housing – then the reality of end of life for some is bleak.
“We hope to hear insights from contributors from all corners of the UK to support us in tackling the scourge of end-of-life poverty.”
The key areas of focus for the APPG Inquiry into Housing and fuel poverty at the end of life will be:
- The challenges of providing end of life care at home to people with a terminal illness who are living in older, overcrowded or unsuitable housing
- The extent to which fuel poverty and living in a cold home affects the health and wellbeing of people living with a terminal illness
- The difficulties faced by people living with terminal illness in affording the costs of housing, including heating costs, particularly for those living in rented accommodation or who require home adaptations due to disability
- The challenges of providing end of life care to people who are homeless, living in temporary accommodation or experiencing housing transience
- The particular challenges faced by people experiencing housing and fuel poverty in rural areas and urban areas of the UK.
- Potential legislative, policy or practice solutions that would improve the experience of people experiencing housing and fuel poverty who are living with terminal illness, their families and carers
This call for evidence will remain open until Friday, 2 April 2021. If you would like to submit evidence to the inquiry or for more information, please email Mark Jackson, Policy Manager for England at Marie Curie, at firstname.lastname@example.org.