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14 Oct 2022

Cost of Dying conference explores how to support social welfare needs at the end of life

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Exploring the challenges of daily life, at the end of life

A national conference supported by the NIHR Applied Research Collaboration (ARC) North East and North Cumbria (NENC) has explored the financial and welfare challenges that can face people at the end of life.

Social welfare problems, particularly around finances, employment and housing, are prevalent towards end of life and have significant impact, and routes to support are often very difficult to find.

The conference identified the relevance and impact of social welfare issues in life-limiting illness and the potential to capitalise on legal rights; asked what do you call ‘end of life’ and considered the inequalities embedded in this term; discussed system-wide learning as a route to change; and invited those attending to be part of the solution.

The delegates attending came from a wide range of backgrounds and areas, including clinical care, primary care, social care, charities, local authorities, members of the voluntary and community sector, housing and the legal sector, alongside patients with lived experience, and their families.

Speakers included:

  • Prof Dame Hazel Genn, Director, Centre for Access to Justice, University College London (UCL)
  • Sam Royston, Director of Policy and Research, Marie Curie
  • Lindsey Poole, Director of the Advice Services Alliance
  • Colette Hawkins, Clinical Lead, Routes to Rights Research, South Tees NHS Foundation Trust
  • Hannah Hesselgreaves, Professor of Organisational Learning, Northumbria University
  • Members of the Routes to Rights Research Lived Experience Group
  • Dr. Hilary Lloyd, Chief Nurse, South Tees Hospitals NHS Foundation Trust

The conference was convened by Colette Hawkins, a Consultant in Palliative Medicine with South Tees Hospitals NHS Foundation Trust. Her work includes ARC NENC-funded research into social welfare legal needs for people living with life-limiting illness.

Colette said:

“Financial hardship and battles to access benefits have been repeated themes in the research I’m currently leading, to understand social welfare needs towards end of life.

“These needs often relate to money, housing and jobs, and add significant burden and hardship to people who are already suffering; compounding the practical and emotional challenges faced by people in the last months of life.

“They are also ‘everyday problems’ for which the law can provide a remedy – but this fact is often overlooked. Many of these people, and their carers, aren’t aware of what they’re entitled to, what’s available in their area or how to navigate the system to find what they need. This can lead to a downward spiral in their quality of life, including their health.

“As healthcare professionals, we may not be able to fix peoples’ housing, employment and financial issues for them. But we can do more to recognise these wider issues as part of the root cause of problems – including their health problems – and direct them to where they can find help as best we can.”

The event aimed to:

  • Raise awareness of the inequalities around end-of-life care and the barriers to access services
  • Understand the consequences of serious ill health on daily life, the breadth and impact of social welfare legal needs and the relevance to their own practice
  • Recognise the need for a connected system response to social welfare legal needs
  • Recognise the role of learning in fostering a connected system response
  • Support delegates to contribute to a developing programme of interprofessional learning

Further resources linked to this work

Video: Public voices – social welfare needs in life-limiting illness

Video: When health meets law – introducing the relationship between health and the law

Marie Curie blog: ‘I was living from hand to mouth’ – legal issues for people living with terminal illness

Legal needs of adults with life-limiting illness: what are they and how are they managed? A qualitative multiagency stakeholder exercise

Conference apeaker biographies

Sally Harris is a non-medical prescriber and the Clinical Lead for Foundations who provide the Clinical element of START (Substance Misuse Service) in Hartlepool.

Her nursing experience has been gained working in Saudi Arabia, Industrial settings, General Practice and for the last 22 years in substance misuse. Sally has a particular interest in Palliative Care and believes that all patients, no matter their history, should have the opportunity for appropriate, timely healthcare and dignified treatment, especially at the end of their lives.

Emma Adams is a Mental Health Research Fellow with the National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) North East and North Cumbria (NENC), based at Newcastle University. She recently completed a Pre-Doctoral Fellowship with the NIHR School for Public Health Research (SPHR). Her research is based within public health and inequalities with a focus on homelessness, mental health and substance use and uses participatory and co-production approaches.

Professor Dame Hazel Genn DBE, QC (Hon), FBA, LLD is Professor of Socio-Legal Studies in the Faculty of Laws at UCL and Director of the UCL Centre for Access to Justice, which she founded in 2013. She is a leading empirical legal researcher and expert on access to civil and administrative justice and unmet legal needs. Her work has influenced policymakers in relation to the provision of legal aid and the social and health effects of unmet legal need.

Between 2016-2018 she developed the activities of the UCL Centre for Access to Justice to include an innovative health justice partnership with a GP practice in East London delivering free social welfare legal services to low income and vulnerable patients within the practice. She is currently Directing a National Strategy for Health Justice Partnership, funded by The Legal Education Foundation. Working in collaboration with UCL Health of the Public she recently launched a Law for Health stream of work https://www.ucl.ac.uk/health-of-public/research/ucl-health-public-communities/law-health with a report entitled: Law for Health: Using free legal services to tackle the social determinants of health https://www.ucl.ac.uk/health-of-public/sites/health_of_public/files/law_for_health_hjp_final.pdf

Colette Hawkins is an Academic Palliative Medicine Consultant, based at South Tees NHS Foundation Trust in Middlesbrough. As a clinician, she became interested in the real experience of living with life-limiting illness and the issues often missed by a traditional medicalised approach. This has led onto research and a more creative approach to education using stories.

Over the past five years, she has led research to increase understanding of the nature, impact and response to legal needs in life-limiting illness. This has been supported by grants from The Legal Education Foundation, NIHR Applied Research Collaborative North East and North Cumbria and the NIHR (Palliative and End of Life Partnership). The research has revealed the prevalence of social welfare legal needs and the challenges people face accessing the right support. Responding to these needs as a more connected system is the focus of Colette’s current work, which engages a large multi-agency stakeholder group. The work is progressing towards an interprofessional learning programme which will build awareness, inclusivity, collaboration and connectivity.

LinkedIn: https://www.linkedin.com/in/colette-hawkins-a3193274/

Researchgate: https://www.researchgate.net/profile/Colette-Hawkins

Twitter: @ColetteYcla

Sam Royston is Director of Research and Policy at Marie Curie.  Since taking on the role, Marie Curie has successfully campaigned for the introduction of an explicit legal commitment for palliative care services to be commissioned in every part of England and initiated the “UK Commission on Bereavement” – an independent commission exploring changes needed to policy and practice to better support bereaved people.

Following publication of ground-breaking new research identifying the number of people dying in poverty each year, Marie Curie also recently launched the “Dying in Poverty” campaign, calling for key changes to ensure no one faces poverty at the end of life.

Sam was previously Policy Director at The Children’s Society and is also a former chair of the End Child Poverty coalition. Prior to that, Sam completed his PhD in the Social Policy department at the University of York, at which point he was also an adviser at a Citizens Advice Bureau. He is also author of the book “Broken Benefits: What’s gone wrong with welfare reform”.

Hannah Hesselgreaves is a Professor of Organisational Development at Newcastle Business School, Northumbria University. Her research explores how people learn collectively to innovate in public services. Following a 15-year career in medical education, she now supports public services and small businesses develop learning strategies through an engaged scholarship lens. She has worked with Colette on legal needs research since 2017 and is co-lead of the current NIHR End of Life Partnership project.

Mark Smith is the Director for Public Service Reform at Gateshead Council where his focus is upon moving from a standardised, one size fits few approach to a bespoke-by-default model. His work on holistically supporting those with debt, who are homeless or who are generally going through tough times goes hand in hand with developing a more flexible and purpose driven workforce. He has previously work in policing, health and the charity sector to develop his approach to saving money by doing the right thing.

Lindsey Poole is Director of the Advice Services Alliance. She joined the Advice Services Alliance in October 2013 having previously held interim CEO roles in the advice and pro bono sectors (Free Representation Unit, High Wycombe Citizens Advice Bureau, Bar Pro Bono Unit).

Lindsey’s career started as a volunteer in a local advice centre which quickly led to roles as a training officer in a housing advice charity and two national advice networks. She then changed career direction, becoming a researcher in criminal justice, working for government both in the Home Office and in the Cabinet Office. She always maintained contact with the advice sector as a ‘first love’, by serving on Board of Trustees of several local advice organisations.

As the Director of the Advice Services Alliances, Lindsey encourages partnership working across the advice networks and undertakes cross-cutting projects. The Advice Services Alliance owns and manages the Advice Quality Standard and is leading the way to drive quality regardless of different delivery models or level of resources. Lindsey represents the advice sector in various consultative bodies including the Ministry of Justice Early Legal Support Action Plan and she chairs the Advice Sector Panel of the Administrative Justice Council. She also sits on advisory groups for sector-based research and has recently published work with Manchester Metropolitan University on advice work for people with convictions. She works closely with advice providers and other stakeholders on the sustainability of the advice sector.

Sarah Gorman is the CEO of a vibrant charity called Edberts House based in Gateshead, North East England. Working with local people, the charity builds happier, healthier, friendlier communities. Sarah began 12 years ago as a community development worker – the only employee of the charity – and has built a team of around 45 paid staff and around 50 volunteers, initiating change through locally led community houses and addressing the wider determinants of health through social prescribing.

Sarah manages four community houses, and the Edberts Community Linking Project, based in 26 GP surgeries across the Borough. Over the past year, the charity has supported over 4000 individuals during the pandemic and has established a team of Covid Community Workers, who have produced an animated educational resource for 7–11-year-olds about Covid 19. They have also pioneered a trauma-informed children’s and family support team, and Edbert’s Health Equity team are now looking to use community-based approaches to tackle health inequalities.

Sarah has developed strong collaborative partnerships across sectors (Local Authority, Public Health, Primary Care, Police, VCSE) to develop new ways of working within the Borough and beyond. She secured £2 million to prototype a place-based approach to multisector working, the learning from which is now being used to help redesign the delivery of Gateshead services.

Sarah is a member of the national VCSE Health and Wellbeing Steering Group, and a Board member of Power to Change, as well as being part of the Human Learning Systems collaborative, and a Health Foundation Gen Q Fellow.

Anne Benson has had a long and varied career path. She has worked as a research scientist at both Cambridge and Oxford Universities, working on the emerging field of immunology and its application to work on antibiotics and drug dependency.

Following time out as a Mum, she changed direction by doing an MBA and moving into management. Her time in management ranged from being a CAB manager in two deprived areas of Northumberland to being Finance Manager, She has been involved in charities both in active support roles and as a committee member. These encompass refugees, children with both physical and mental health issues and relatives of those with substance misuse and mental health problems. She has been an active member of the RDS NENC PPI panel for several years and regularly provides feedback both by online reviews of research proposals and by virtual panel meetings with researchers. She was vice chair of the liaison committee of the CNTW NHS Trust where her key role was to ensure the voices of users and carers were heard.

She has a wealth of experience as a carer and a patient. She has always had the main caring role within her family, especially in the period leading up to end of life including looking after her son who had lifelong severe mental health problems and who finally succeeded in taking his own life aged 39, her father with leukaemia, her mother with COPD, angina and bowel cancer and her mother-in-law with a severe stroke. She is currently the main carer for her daughter in law who has chronic, severe mental health problems. She is passionate about the need for reform of service provision to meet the needs of those who are often unheard and to gain recognition of the ‘professional’ expertise of carers and their vital role in the successful delivery of any provision.