A University of Glasgow led exhibition that shares research findings on experiences of dying at home for people facing financial hardship and deprivation in Scotland is on display to MSPs at the Scottish Parliament.

The Cost of Dying exhibition sheds light on the profound effect that people’s socio-economic circumstances can have on their end-of-life experience. It features photography by award winning Scottish photographer Margaret Mitchell, who was commissioned to create a body of work reflecting on participants’ stories and emotions.

This exhibition is based on a four-year study led by researchers at the University of Glasgow, with support from Marie Curie. The ‘Dying in the Margins’ study was funded by the Economic and Social Research Council (ESRC), part of UKRI (UK Research and Innovation).

By 2040, up to 10,000 more people will be dying with end-of-life support needs in Scotland, and at least two-thirds will be dying in community settings such as care homes and hospices.

This longitudinal study used participatory visual methods, specifically photovoice and digital storytelling, to enable participants to tell their own story in their own words and images. It is the first time an exhibition on this particular subject has been displayed in the UK.

Originally on display at the University of Glasgow’s ARC building in May 2023, the exhibition moved to Glasgow’s Mitchell Library in August. It will be on display to MSPs at Holyrood from November 14-16.

The exhibition is being sponsored by Evelyn Tweed MSP. There will also be a members’ debate about the issues raised sponsored by Paul O’Kane MSP, and a reception for the families involved.

Evelyn Tweed MSP said: “The cost of living crisis is having wide ranging impacts, stretching already tight household budgets and pushing many into poverty. The challenges associated with inequality and poverty can be compounded for those facing terminal illness, due to the ‘double burden’ of income loss and increased costs brought on by a terminal illness, but the research from the Dying in the Margins study show that this group is often overlooked. I was glad to be able to support the Cost of Dying exhibition to be shown in the Scottish Parliament to highlight this to MSPs and will continue to do what I can to support Marie Curie’s calls for increased support for terminally ill people.”

Dr Naomi Richards is Senior Lecturer in Social Science, Director of the End of Life Studies Group at the UofG's School of Social and Environmental Sustainability and Principal Investigator on the Dying in the Margins study. She said: “We are pleased that the Cost of Dying exhibition has arrived at Holyrood. This project highlighted important challenges facing people with a terminal illness living with poverty and structural disadvantage including (but certainly not limited to) unsuitable housing, high energy costs and lack of income support to cover essentials like transport and food. To have it on display at the heart of Scotland’s government, where it will be seen by those who have the power and influence to bring about positive change, is hugely gratifying. Ultimately, we hope that this - and the associated member’s debate - will contribute to transforming policy and outcomes for this structurally marginalised population.

“Our thankfulness and thoughts go to those who participated and their families. We could not have reached this point without their bravery in sharing these stories, to raise awareness and help others.”

Dr Emma Carduff, Head of Research and Innovation, Marie Curie Scotland, said: “Financial hardship should never be a barrier to accessing compassionate end of life care and a dignified end of life experience. The majority of stories and images included in this exhibition feature people supported by Marie Curie and highlight the systemic issues faced by those who live in poverty. This exhibition has aimed to bring these issues to the fore, challenge assumptions and promote action.

“Sadly, at Marie Curie Scotland, we know that living in socio-economically deprived areas worsens health outcomes for terminally ill people. This is often because of longstanding health inequalities and inequities around access to palliative care support, which was exacerbated during the pandemic when health and social care services were overwhelmed. But worryingly, we also now know that terminal illness is pushing people into poverty and state support is currently insufficient.

“The Scottish Government’s upcoming palliative care strategy is a crucial opportunity to support the entirety of a person’s end of life experience. Palliative care is at the heart of this, but the government must address overlapping end-of-life issues simultaneously, all of which have been more acute over the past three years.”

First published: 14 November 2023

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