Background Accessing benefits for the terminally ill has been a controversial topic in recent years (Marie Curie, 2022; Marie Curie, 2019). Our Welfare Service helps hospice patients, families, and carers with their benefit entitlements. Combining the technical expertise of a colleague with support from volunteers, enables us to help more patients. COVID-19 restrictions forced us to change our way of working, giving us the opportunity to review the collection and use of our data.
Review paper-based processes of collecting and sharing data.
Show that terminally ill patients are often entitled to more than just Attendance Allowance or Personal Independence Payment.
Improve outcome reports to executive and multi-disciplinary teams.
Bolster our message to sponsors and supporters.
Identify which data are important for measuring the impact of the service.
Make use of technology to improve the quantity and quality of the data we capture.
Develop shared spreadsheets and electronic files so that referrals are not missed or delayed.
Change data capture to current financial year instead of on file closure.
Create calculations of average life expectancy to demonstrate monetary value of benefits accessed.
Results The Welfare Service now provides data on:
Referrals: annual/monthly/quarterly; by source; and by age.
Statistics in real-time.
Analyse benefits entitlements, showing we helped more patients during COVID-19 restrictions, with a value of £28104.00 in 2021/22.
Demonstrate successes including
Outstanding benefit payment to patient of £7230.00, and ongoing award of £62.00pw due to a DWP error.
£792.00 pw for a couple who had spent their savings on rent and were threatened with eviction.
Conclusion Our new normal is an improvement. Research shows that terminal illness is detrimental to health and wealth. Specialist welfare advice is an important part of end-of-life care, making a difference to patients’ wellbeing. Our Welfare Service supplements existing healthcare provision to holistically improve patient outcomes.
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