Juliet Stone

This study aimed to establish which subgroups experience reduced inequality in the prevalence of fuel poverty when a 50% social tariff is applied to energy bills, for those at the end of life. Those with a terminal diagnosis are among the most vulnerable in society. If they cannot afford sufficient fuel to adequately heat their home, it can exacerbate conditions, cutting short life. The terminally ill simultaneously need to consume more energy (to keep warm and for essential medical equipment) and often experience reductions in income. However, they are a heterogeneous group with diverse circumstances, hence it is important to consider the characteristics of those households impacted. Yet there is a lack of research on those experiencing fuel poverty at the end of life. We used longitudinal survey data to estimate the proportion of individuals experiencing fuel poverty across subgroups, using Scotland’s fuel poverty metric. A social tariff was applied and assessed to identify which subgroups are lifted out of fuel poverty, and which are not. We then evaluated the impact on inequality in the risk of fuel poverty. The results showed that those lifted out of fuel poverty tend to be subgroups with lower risk of fuel poverty. There is no significant reduction in inequality in fuel poverty for the demographic groups we analysed. Indeed, for key subgroups with elevated levels of fuel poverty, a social tariff increases inequality. The findings emphasise the need for targeted support to ensure those at the end of life have an adequate income.

Background: People living with terminal illness face a double financial burden from additional costs and loss of earning for themselves and their carers. Social security benefits are intended to help alleviate some of this financial pressure, and in the UK and other countries people are eligible for fast-tracked access to financial support via the Special Rules for End of Life. One in 3 people who are eligible miss out on this support, yet there is limited evidence on the reasons for this take-up deficit. Objectives: The aim of this study is to understand the barriers and facilitators to claiming benefits for terminally ill people from the perspectives of patients, carers, and health care professionals. Methods: This is a qualitative study combining i) focus groups with healthcare professionals recruited via professional networks and social media, and ii) interviews with patients and carers recruited in hospital and hospice settings. We analysed the data using Practical Thematic Analysis Results: Fifty-five multidisciplinary healthcare professionals participated in 11 focus groups, and we interviewed 10 patients and carers. We constructed five descriptive themes to summarise the data: Navigating priorities and uncertainty; positive impacts alongside a sense of shame and stigma; talking about money, difficulties and dividends; everybodys, yet nobodys, responsibility; and sticking points in the system. Conclusion: The themes reveal several challenges that may contribute to people not taking up this financial support. However, discussions about access to benefits were also seen as a core part of holistic care, a positive way to offer support and a gateway to other discussions about end-of-life care preferences and decisions. Recommendations for policy and practice include evaluating the adoption of a diagnostic rather than a prognostic eligibility criteria, integrating discussions about benefits into existing processes such as advance care planning, and improving education and support for clinicians.

Context: In the UK, and in other countries, people living with a terminal illness are eligible for financial support to help with the costs of serious illness and to support their dignity and independence. This study investigates the take-up of benefits in the last year of life and identifies sociodemographic, clinical, and geographical factors associated with underclaiming. Methods: Retrospective cohort study using linked mortality, Census and benefits data for all people who died aged 16+ from chronic illnesses in England and Wales between 1 May 2018 and 30 April 2021. Outcome was receipt of non-means tested disability benefits in the last 12 months of life. We describe geographical variation in take up, and association with sociodemographic, clinical and geographical exposures using Poisson models. Findings: Our population included 1,049,493 eligible decedents, with an overall take-up rate of 65.9%. After adjusting for sociodemographic factors, variation in take-up by cause of death was wide: liver disease 44% (95% CI 43, 45%), heart failure 52% (51, 52%), cancer 62% (61, 62%), dementia 75% (74, 75%), and neurodegenerative diseases 90% (88, 91%). Across Local Authorities, the age-and-sex-standardised take-up varied from 53% to 78%; rates were generally higher in more deprived areas, but not uniformly. Conclusions: In England and Wales, 1 in 3 people who die from expected causes (120,000 each year) do not receive the benefits for which they are eligible. Our analysis uses novel data linkages and highlights clinical and sociodemographic groups and geographical areas that could be targeted with proactive take-up initiatives.

Background: Improving support for unpaid carers is a policy priority internationally, yet there are few reliable population estimates on numbers of end of life carers, and little is known about the demographic characteristics of this group. Aim: (1) Estimate the number of unpaid end of life carers in the UK; (2) Describe demographic characteristics of this group. Design: An observational study using data from the UK Household Longitudinal Survey (Understanding Society), Health Survey for England and the Office for National Statistics to estimate the number of end of life carers in the UK. Understanding Society was used to explore characteristics of end of life carers including poverty before and after bereavement. Participants: Understanding Society collects annual data on around 40,000 households in the UK, including carers. Results: Data from Understanding Society suggests there are 150,000–180,000 unpaid end of life care in the UK each year, while data from Health Survey for England suggests a higher estimate at 570,000–775,000 carers. End of life carers are more likely to be older and female. There is an increase in the percentage of carers falling into poverty one year after they provided care. Conclusions: These analyses have provided the first estimate of the number of end of life carers in the UK, using methods which are replicable in other countries. Our data provide a useful benchmark both for the UK and for other comparable high income countries. Many end of life carers are living in poverty, including after bereavement, showing a need for policy initiatives to provide support.

Purpose: Increasing food insecurity (FIS) in the UK presents a major challenge to public health. Universal Credit (UC) claimants are disproportionately impacted by FIS but research on socio-demographic factors and consequent nutritional security is limited. Methods: A cross-sectional online survey (September 2021 - April 2022) assessed FIS in UC claimants (males and females, n = 328) (USDA 10 question module), dietary intake (females, n = 43; 3–4 × 24-hour dietary recalls) and coping strategies. Binary logistic regression tested sociodemographic variables influencing the odds of food insecurity. Diets ofUC were compared with national diet and nutrition survey (NDNS) participants and thematic analysis conducted for drivers and impacts of FIS. Results: FIS was experienced by 84.8% of UC respondents (73.8% very low food security). Equivalised income <£200 week^-1 increased odds of FIS by 7.3 (3.4–15.3) times compared with households receiving >£300 week^-1. Being unemployed (P = 0.004), travelling > 15 min to obtain food (P = 0.016), shopping less than twice per week (P = 0.001) and receiving < 47.7% of the minimum income standard (MIS) all increased risk of FIS. Diet quality of working age females was lower (45.9%) compared to those in the NDNS (49.6-55.8%; P < 0.05) characterised by limited protein sources, minimal fruit consumption and reliance on bread. Intakes of vitamin A, iron, selenium, potassium, iodine and magnesium were consistently below most NDNS cohorts. Participants felt impotent to make substantive changes to their diets due to poverty. Conclusion: During this study, dependence on UC almost guaranteed recipients would be food insecure, consuming insufficient micronutrients to support health. MIS may provide a useful benchmark to prevent food poverty.