In 2017 Social Security Scotland set up Experience Panels to help in the design, delivery, oversight and review of Scotland's new social security system. These panels are made up of over 2,400 people who have experience of at least one of the benefits that have devolved to Scotland. However, hard to reach and marginalised groups are less likely to be visible in the Experience Panels. The 'seldom heard voices' research was consequently designed to ensure their voices are included in the design of social security services.
There are four groups identified as 'seldom heard' in this research. They are Mobile Populations, Vulnerable Groups, End of Life, and Carers and Care Experienced. For each group two waves of fieldwork are being undertaken.
This is the report for the first wave of the End of Life strand. This strand aims to explore the experiences of people living with a terminal illness (and their carers) or those who have been bereaved.
All but one participant in the End of Life group either had experience of living with or caring for a partner with a terminal illness. The remaining participant had lost their husband to cancer. These circumstances created a range of health, financial and practical pressures on participants, which were often inter-related.
This report highlights key barriers and challenges in accessing benefits faced by End of Life strand research participants, as identified through analysis of qualitative interviews. The report also discusses enablers or potential improvements which may support increased benefit uptake among this group.
Research findings suggest that participants were often initially unaware they were entitled to benefits following a terminal illness diagnosis. This was possibly due to participants' limited prior experience of the benefits system, a lack of signposting as part of (initial) medical appointments, and health concerns initially dominating their focus. This meant some participants with a terminal illness and their families did not seek financial support for some time after their diagnosis. This is despite their health situation being the trigger for their need and eligibility for financial support.
Participants typically found benefit application forms challenging to complete on their own. Forms were seen as long and complex. This meant third sector organisations were strongly relied on for supporting participants through the application process.
Some participants reported challenging interactions with government agencies when trying to find out about or access benefits. They reported not getting the information required or being treated insensitively. This was not universal and some other participants reported more positive or neutral experiences.
In discussion, participants also identified key enablers which had or would have helped them access the benefits system. Taking account of these factors may help make the benefit system more accessible in future for people facing similar circumstances.
Third sector organisations were found to be a key link for enabling participants to access financial support through the social security system. Most participants said such organisations were key for helping them understand that they were entitled to support and what specific benefits they could access. Additionally, several participants described the crucial role third sector organisations played in assisting them to complete application forms or filling them out on their behalf.
Most participants reported a need for clearer and more readily available information about what benefits are available, eligibility rules, and how to apply. Many felt a single source of information such as a leaflet or pack would be helpful.
Several participants felt that doctors and other health professionals could play an earlier and more proactive role in providing benefits information. This could be through the provision of an information pack as above or signposting to organisations who could help. A few mentioned that information about support available would have been helpful at the point of diagnosis specifically.