To coincide with the display of the ‘Cost of Dying’ exhibition at the Scottish Parliament (14th – 16th November 2023), we present our final digital story; “Frank’s Story”. Key themes in Frank’s story are the physical inaccessibility of the home affecting care provision, financial struggles in caring for a terminally ill family member, and the emotional impact on carers when unable to support a loved one to die at home.
Frank, a 58-year-old Dundee resident living with multiple health conditions, was largely confined to his flat due to mobility issues and the risk posed by COVID-19. His daughter, balancing the roles of Frank’s primary carer and a mother to two young children, left her job to care for him, incurring significant financial and emotional burdens.
Informed by the study findings, the Dying in the Margins team and colleagues at Marie Curie have developed a joint briefing, published to coincide with a private member’s debate on the findings of the study. To begin to address end of life poverty, we call on the Scottish Government to:
- Include terminally ill people in the eligibility criteria for any increased support for energy bills this winter.
- Provide comprehensive social security support for terminally people and their carers.
- Ensure terminally ill people are offered timely and affordable adaptations to their property.
“I received £69 a week in carer allowance but at the end of the month, £300 would be taken off my Universal Credit.” – Frank’s Daughter
Frank and his daughters’ experience is also representative of the “double burden” highlighted in our briefing document, where families struggle with reduced earning capacity and escalating expenses unique to terminal illness care. This includes costs like those Frank’s daughter faced for food delivery and additional energy expenses.
Frank’s experience highlights many of the challenges faced by people experiencing financial hardship at the end of life. As shown in the accounts presented in the Cost of Dying exhibition, people who were otherwise getting can be pushed into poverty by a terminal diagnosis. Frank’s story, along with the many others featured in the Cost of Dying exhibition, illustrates why targeted policy changes are needed to enhance support for those facing financial hardship at the end of life.
Frank’s poignant story reveals the harsh realities of caring for a terminally ill family member, underscoring financial struggles and emotional burdens. The joint briefing by the Dying in the Margins team and Marie Curie, alongside the “Cost of Dying” exhibition, emphasizes the urgent need for targeted policy changes to enhance support for those facing financial hardship at the end of life.
Frank’s narrative is deeply moving and illuminates the challenges confronting families navigating terminal illnesses. The financial hurdles and emotional toll faced by his daughter are poignant reminders of the need for better social security provisions for terminally ill individuals and their caregivers. This narrative emphasizes the critical call for policy enhancements to prevent terminal diagnoses from plunging families into financial struggles.