Introduction People of working age who have been diagnosed with a terminal illness, and those who care for them, often find themselves forced to give up work and become unemployed. In addition to the distress of dealing with a terminal illness, consequences of giving up work include financial stress and strain, and the associated negative impacts on wellbeing: in the UK, around 25,000 people a year of working age die whilst in poverty.

Aims The aim of this project was to better understand the experience of terminal illness in working-age people, with a focus on mental health and wellbeing, and the role of employer support.

Methods We carried out a scoping review of the literature searching across three databases in addition to a call for evidence. We conducted a narrative synthesis on all included papers. We conducted an online survey of 1,016 HR professionals in the UK.

Results Three core and inter-related themes were identified: social welfare legal needs, financial stress, and mental wellbeing. As a result of being diagnosed with a terminal illness, participants experienced financial stress which was partially related to unmet legal needs, both causing disturbances to mental wellbeing. The survey suggests employees with a terminal illness receive wide-ranging employer support depending on organisation size and industry sector. Support includes flexible working, paid time off to attend appointments and manage the demands of illness/treatment, and managing terminal illness outside of standard sickness reporting processes.

Conclusions People of working age with a terminal illness experience high levels of financial stress and difficulties meeting their complex legal needs, which negatively impacts their mental wellbeing. The support they receive from employers varies substantially.

Impact Exploratory work in under-researched areas that starts to fill knowledge gaps.

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2. Kochovska S, Luckett T, Agar M, et al. Impacts on employment, finances, and lifestyle for working age people facing an expected premature death: a systematic review. Palliat Support Care 2018;16(3):347–364.

3. Marie Curie. (2019). The cost of dying: the financial impact of terminal illness.