Glasgow woman with two brain tumours backed study into 'cost of dying'

Researchers at Glasgow University are staging the first ever UK exhibition based on the experiences of people facing financial hardship as they cope with end-of-life care.

One woman, coping with two brain tumours, shared her story of having to pay hundreds of pounds on taxi fares to get to hospital for treatment.

Stacey O’Brien, 39, also spoke of her fight to move out of a cramped one-bedroom apartment she shared with her partner and mother.

Stacey and Joost (Image: Margaret Mitchell)

The Cost of Dying is based on the university’s four-year study, Dying in the Margins, which is supported by Marie Curie and funded by the Economic and Social Research Council.

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.

Award-winning Glasgow-based documentary photographer Margaret Mitchell was commissioned to create a body of work reflecting on participants’ stories and emotions.

Dr Naomi Richards, senior lecturer in social science and director of the End of Life Studies Group at Glasgow University, said: “The imagery and testimonies encountered in this exhibition lay bare end-of-life experiences which are not always considered.

“Firstly, not everyone pictured in the exhibition looks as if they are dying. Despite serious illness, pain and discomfort, many people included in the study continued to go about their daily lives. That the dying are still carers, or still live alongside us in our communities, passing us in the stairwell, the library, or on the bus, is not always recognised.”

“Our findings show that participants were weighed down by the heavy financial costs of dying. For those who had struggled on a low income their entire lives, terminal illness only plunged them further into hardship.”

Stacey took part in the study with her partner Joost ten Wolde. The 39-year-old lived with a rare hereditary genetic condition called Li-Fraumeni syndrome, which makes a person highly susceptible to developing cancer.

She lived with her mother and Joost in a one-bedroom flat in the city centre. Her extensive medical regime meant she needed to take taxis to hospital frequently. She told the researchers: “I’m in the health centre for blood on Monday, that’s £20. Then to get injections Tuesday, £25. Then to see my surgeon on Thursday at the hospital, £20.”

Stacey also revealed she felt trapped inside because the lift often malfunctioned and she was too ill to manage the stairs. After a year fighting to move, the couple finally secured a two-bedroom ground-floor flat. Shortly afterwards, however, Stacey’s symptoms worsened and she had to move to a hospice, where she sadly died.

Dr Emma Carduff, head of research and innovation at Marie Curie Scotland, said: “Financial hardship should never be a barrier to accessing compassionate end-of-life care.

“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.”

The exhibition is open to the public from April 25 to May 5 at Glasgow University’s Advanced Research Centre.

A free panel discussion on April 26 will explore the exhibition and discuss its implications for policy, practice and public awareness.