Title: Review of NICE guideline NG6 for people at the end of life
Funder: Marie Curie

Abstract: Background: Living in fuel poverty is associated with poorer health and wellbeing outcomes for people who are terminally ill. NICE guideline NG6 provides recommendations for preventing and addressing the health consequences of cold housing among vulnerable groups, but no evidence exists on the specific delivery and impact of these recommendations among dying people in England. Aim: To assess the specific consideration that is being given to the needs of terminally ill people in the implementation and operation of select recommendations in guideline NG6 among Health and Wellbeing Boards, Local Authorities, and other stakeholders in England; to identify gaps in existing approaches and make policy and practice recommendations to address these gaps. Design: This study will utilise a qualitative methodology that draws on secondary data. Data will take the form of existing relevant resources such as academic and grey literature, delivery reports, and strategic and governance documents, among others. This will be investigated using an established analytical approach (Document Analysis) guided by the overarching research aims set out above, and later consulted on via PPI engagement. Data collection and analysis: Data collection and analysis, and related research activity, will be undertaken as follows: - evidence review -document analysis -Development of case studies and policy and practice recommendations -Final policy-style report Implications: This project will help to close an important evidence gap on the implementation and impact of NG6 among people who are terminally ill in England. The findings will provide a key tool in Marie Curie’s engagement with policymakers to improve support for dying people who are experiencing fuel poverty or living in cold housing. The project could be considered for replication in Wales, which is also covered by guideline NG6.

Lay abstract: People who are terminally ill, or reaching the end of life, can be among the most vulnerable to the health and wellbeing consequences of fuel poverty and cold and poor housing. NICE guideline NG6 – which focuses on excess winter deaths and the health risks associated with cold homes – identifies terminally ill people as an at-risk group; however, there is limited understanding of the extent to which the recommendations have been implemented across England, and no analysis has been carried out to assess the specific delivery and impact of the recommendations on dying people. Our project will help to close this evidence gap – assessing the specific consideration that is being given to the needs of terminally ill people in the implementation and operation of NG6 recommendations, potentially those related to hospital discharge and the care of people in their own homes. To do this, we will: • Examine the extent to which Local Authorities, Health and Wellbeing Boards and other stakeholders in England are considering the impact of fuel poverty and cold housing among people who are living with terminal and life-limiting illnesses and those at the end of life. • Identify and critically examine how different localities have implemented select recommendations from the NICE guideline NG6 for people who are at the end of life, and the successes, challenges, and gaps in their approaches. • Assess the benefits/potential benefits of the successful delivery of the recommendations in NICE guideline NG6 for people who are terminally ill or at the end of life. Evidence from the project will feed into Marie Curie policy and public affairs engagement activity to influence the delivery of guideline NG6 and wider fuel poverty policymaking in England. It may also inform the activity of other relevant organisations working in these policy areas and provide a platform for further cross-organisational collaboration.

Research activity codes: 8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE;7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE