CIRCLE & Sustainable Care Seminar Series: videos

An Alternative Experimental Approach to Understanding Pain in People with Dementia

This presentation describes the need to develop a new understanding about pain in people with dementia. Existing procedures for assessment of pain rely on subjective self-report using pain questionnaires and rating scales that have proven to be highly problematic. Consequently, pain in people with dementia can be undetected and/or undertreated. To address that, I have developed an alternative experimental approach that builds on theoretical and methodological precedents from the arts, humanities and social sciences. Based on this approach, a number of participatory workshops were conducted to explore pain and its expression in people with dementia. This had led to a new definition of pain as an interruption of the socially mediated process of bodily meaning-making. These results emphasise that the future of pain research needs to consider the relational aspects of pain more seriously.

Dr Christian Morgner joined the Management School in June 2021. Christian joined the Management School as Senior Lecturer in Cultural and Creative Industries.

Prior to this appointment as Senior Lecturer, Christian was lecturer at the University of Leicester, held a Postdoctoral Research Fellowship at Hitotsubashi University, Japan funded by the Japanese Society for the Promotion of Science and worked as a Research Associate at the University of Cambridge funded by the German Academic Exchange Service. He has also held visiting fellowships at Yale University, University of Lucerne, University of Leuven and the École des Hautes Études en Sciences Sociales (Paris).

His research lies within fields like complexity studies, network analysis and creative practices, with a particular focus on diversity and inclusivity. He is interested in researching collaborative practices, such as, interactions with technology, communication of pain and arts interventions in dementia contexts.

From 2018-2021, he was the Early Career Representative of the ARUK Midlands network. Currently, he is a member of the Dementia, Arts and Wellbeing Network (DAWN) and International Health Humanities Network.

Design and implementation – never the twain shall meet? Siloed communities of practice in English technology-enabled care services

Increased demand for services, population ageing, and chronic workforce shortages have changed the care ecosystem and its anticipated sustainability. More than ever, technology is viewed as a solution for an ailing care system. Technology-enabled care services have relied on simple assistive technologies, such as social alarms and legacy telecare products, to support older people living in the community. In the last ten years, we have seen an increasing emphasis from industry, government departments, and some local authorities embrace digital technology to ‘modernise’ care systems and arrangements. One challenge for new digital technology, like other complex interventions, is the capacity to which they can become quickly and sustainably embedded into care services and systems.

Drawing on a recently completed ESRC-funded study, this seminar will explore one limitation that affects the capacity for new digital technology to penetrate care services: the divide between technology developers and actors responsible for their implementation in care systems. Care providers, technology designers and developers, and people with lived experience have championed the importance of co-production to ensure care experienced individuals can inform the design of new care service delivery models and complex interventions, like technology-enabled care products. This ‘user involvement’ or ‘patient and public involvement’ has increased over the last five years in care services and with human-centred designers. However, these two communities of practice exist in divided, isolated silos with what appears to be little direct engagement with each other. Emergent technology may create a satisfying user experience for older people or carers; however, innovators do not always have the knowledge, network or skills to understand the care system, procurement, and localised service delivery models to sustain their business beyond interminable ‘pilotitis’ projects. I argue that collaborative, co-production techniques should be extended to agents across the whole care ecosystem to improve the spread, scale, and sustainability of new digital technology implemented in care settings.

Matthew Lariviere is a Lecturer in Social Policy in the School for Policy Studies at the University of Bristol. He is a social anthropologist whose teaching and research investigates the intersections of ageing, care, and technology. More specifically, Matthew’s research encompasses theoretical, empirical, creative, and applied approaches to explore: care and ageing futures; geographies and materialities of care and caring; innovative design and evaluation approaches for digital health and care services; and digital transformation in/of health and social care arrangements and systems. Deeply committed to interdisciplinary and external engagement, Matthew has delivered public engagement workshops and exhibitions throughout the UK and convened policy and practice knowledge exchange events in the UK, Europe, Australia, and the Americas. He tweets as @MattLariv.

Technology in care systems: displacing, reshaping, reinstating or degrading roles?

In the UK and further afield, policy discourse has focused on the efficiencies technology will afford the care sector by increasing workforce capacity at a time when there are recruitment and retention issues. Previous research has explored the impact of telecare and other technologies on roles within the care sector, but issues related to job quality and the consequences of newer digital technologies that are increasingly being deployed in care settings are under researched. Through an exploration of the literature on robotics and empirical studies of telecare and digital mainstream technology use in UK adult social care, this presentation will examine how these technologies are generating new forms of work and their implications for job quality, arguing the tendency to prioritise technology results in the degradation of work in the care sector.

Dr Kate Hamblin is Senior Research Fellow at the Centre for International Research on Care, Labour and Equalities, University of Sheffield. Her research has focused on technology and its role in the care of adults with complex needs; the balance between unpaid care and paid employment; self-employment and ageing; and ‘active ageing’ employment and pension policies. She worked on the Sustainable Care research programme, leading a project exploring the role of technology in adult social care.

Care Inequalities: Unpaid carers and their material, relational and subjective wellbeing. 

In England, more than 6 million unpaid carers support people who need help to manage everyday activities, usually because of illness, disability, or advanced age. Research shows that providing care tends to have negative effects on their wellbeing. This seminar draws together research conducted as part of the Sustainable Care programme and explores inequalities in care, including the social gradients of unpaid care, the impact of unpaid carers’ responsibilities on their wellbeing, and the impact of the Covid-19 pandemic in exacerbating these care inequalities. Utilising large-scale representative survey data contained in the British Household Panel Survey and the UK Household Longitudinal Study (Understanding Society), the research follows people over time to explore who is most likely to become an unpaid carer, and to understand how the nature of their caring responsibilities (the location of care, the relationship between the unpaid carer-care recipient, and intensity of care) and their circumstances impact on their employment status transitions, and subjective and objective health (allostatic load).

Professor Matt Bennett is a Professorial Research Fellow in CIRCLE (Centre for International Research on Care, Labour and Equalities) and Sociological Studies, at the University of Sheffield. Matt holds an associate position in the School of Social Policy and Practice at the University of Pennsylvania, USA, where he is also the Co-Director of the month-long Social Impact Fellowship (Matt was himself awarded a Social Impact Fellowship in 2013).  Matt’s research interests are in inequalities and wellbeing outcomes of care, prosocial behaviour and social diversity. He is Co-Investigator in the ESRC ‘Sustainable Care’ and NIHR ‘Achieving Closure?’ programmes that look at the cost and contributions of care and the impact of care home closures. He is also Principal Investigator on an ESRC Secondary Data Analysis Initiative award that looks at the impact of social diversity on stress (allostatic load) and wellbeing. His expertise is in linking and analysing large-scale surveys and administrative datasets using advanced statistical methods.

The Value Proposition of emergent homecare models: Implications for Care Workforce

In this seminar Dr Zimpel-Leal will report on the findings of her research examining the value proposition of emergent homecare models in England and the implications for the care workforce. Homecare providers for older people are facing a rise in demand for their services driven not only by an ageing population but also from a market demand for personalised care, choice, continuity of care, and real time availability. Combined with turbulent political and policy environments, and the government’s need to maximize resource utilization and contain costs, the current care landscape presented an opportunity for new homecare models. Utilizing the Business Model Canvas, this study investigated five case studies with homecare providers using semi-ethnographic methods. It found emergent models such as uberisation, community-based, live-in and preventative models are becoming more pervasive in the current landscape; with major shifts related to value proposition, partnerships, workforce and customer segments. Changes are promoting more flexibility and responsiveness in the care market, and encouraging workforce development.

Dr Karla Zimpel-Leal is a social scientist with research and teaching emphasis on innovation and enterprise. My research is inspired by real world challenges that can inform both academia and industry. The latest research is aligned to the UK’s Industrial Strategy grand challenge of an Ageing Society, looking at emergent business models in the homecare sector. Karla works closely with homecare organisations, policy makers and regulators, developing a sustained engagement with these stakeholders and the wider care landscape in the UK.

Karla’s previous research encompasses innovation management and knowledge transfer, particularly focusing on understanding the generative mechanisms that are driving knowledge exchange between science and industry in the food sector, and addressing this sector’s challenges such as healthy ageing, nutrition and food security whilst reducing waste and environmental impact. Before re-joining academia and with an entrepreneurial spirit, Karla spent many years paving her own road through founding a bespoke gifting retail business in London and co-founding a beekeeping business in Norwich, as well as being a consultant in Supply Chain Management and Procurement for organisations such as; Office of Communications (OFCOM), Ealing Council and Lotus Cars. Karla’s academic degrees comprise a BBA (Hons) in Business and International Trade from Unisinos, Brazil, an MSc (distinction) in Supply Chain Management and a PhD in Scientific Knowledge Transfer, both from Norwich Business School, University of East Anglia, UK.

Care across borders? The role of transnational care arrangements and relationships in ageing migrants lives

Diverse patterns of mobility and migration are producing new caring contexts. As they age, migrants may develop strategies to exchange care and solidarity across borders. Transnational care can involve physical presence through occasional and extended visits with family, potentially leading to family (re)-unification in the country of origin or destination. There is also a growing recognition that virtual care practices can be maintained with the help of communication technology. Transnational caregiving is, however, not only created at the level of individual relationships, but also facilitated (or hindered) by broader structural contexts and welfare policies, which shape conditions ‘here’ and ‘there’, as well as the relationship between them. In this presentation, we will focus on the role of transnational care arrangements and relationships in the lives of two different groups of migrants as they age in place; retired British migrants in Spain and post-war African Caribbean, Irish and Polish migrants in Britain. Drawing on qualitative interviews with these migrants, we explore the place of transnational care practices in their lives, and the ways in which structural factors, such as welfare systems, migration policies and geo-political inequalities, can both facilitate and restrict transnational care. Despite their very different migration experiences, we point to the common challenges experienced in respect of care as a result of the ‘hostile environment’ and Brexit.

Majella Kilkey is Professor of Social Policy at the University of Sheffield, where she is also Co-Director of the Migration Research Group in the Faculty of Social Sciences. She is Co-Investigator in the ESRC Sustainable Care programme, researching how care is impacted by increasing diversity, migration and mobility.

Kelly Hall is a Senior Lecturer in Social Policy at the University of Birmingham. Kelly’s research interests include ageing, social care, migration and the third sector. Her research on international retirement migration focuses on the migration and return of vulnerable, older British people within the EU and more recently the impact of Brexit. Her participatory research has led her to co-develop the website www.supportinspain.info with the British Consulate, Spain.

The emerging live-in care market in the UK and migrant workers’ wellbeing: the complex interplay of Brexit and the COVID19 pandemic

Live-in care is a rapidly expanding home care model in England despite being uncharacteristic to the UK welfare regime. This form of care is predominantly provided by migrants who might be particularly attracted to work as live-in carers due to accommodation availability. It is usually organised through different formal and informal mechanisms and, in many situations, remains as private/domestic arrangements facilitated by introductory agencies. Brexit and new immigration points-based systems introduced in January 2021 have direct implications on the supply of migrant workers, particularly from within the EU. Furthermore, the COVID19 pandemic has changed the care market dynamics, with some reporting shifting in preferences for the place of care diverging away from care homes. This paper explores the implications of new complex care and immigration policy and practice landscape on the supply and experience of migrant live-in care workers. Based on research undertaken as part of the Sustainable Care programme, I draw on findings from policy and literature reviews review, interviews with 15 migrant live-in care workers in England to explore the distinct characteristics of live-in care as an emerging form of care. I situate the discussion within a wellbeing framework that encompasses both workers and care recipients. I will then reflect on the potential impact of Brexit and COVID on live-in care as a new emerging market. The discussion will use data collected from two Delphi surveys with key policy and practice stakeholders in the UK..

Shereen Hussein is a Professor of Health and Social Care Policy at the London School of Hygiene and Tropical Medicine. Shereen is an established multi-disciplinary Professor with extensive social care and health research experience working primarily with policymakers in the UK and internationally. Her background is in medical demography, statistics and computer science. Shereen is a Co-Director of PRUComm, focusing on health and social care systems and commissioning. Shereen has advised the UK government and parliamentary committees on adult social care issues, particularly the workforce, including wages and immigration policies. Internationally, she has acted as a senior expert for the UN-ESCWA, UN; WHO; the World Bank and UNICEF, on LTC delivery and planning, elder abuse and ageing/dementia policies. Shereen is a visiting professor at the University of Kent, King’s College London and the University of Southern Queensland.  She has recently established a unique GCRF-funded research network specific to policy and practice development for healthy ageing in the Middle East and North Africa (www.menarah.org).

How do you reform social care? Reversing drift in the four nations of the UK

In this presentation, we will focus on the question of how to make progress on social care reform in the UK. The social care crisis in the UK is often portrayed as an example of a reform deficit or policy drift: a long awaited and much needed reform that has not yet been delivered. Drawing on documentary analysis and interviews in the four nations of the UK, we find that there are different degrees of drift in the four nations of the UK. Scotland has gone furthest on care reform, introducing free personal care, although not addressing the issue of how to bring more money into the care system. Wales has shifted the means-test and introduced a maximum weekly charge for home-based services but abandoned its legislative commitment to an overall spending cap. England has made no progress on care funding reform and in fact could be seen as going backwards, due to the lack of inflationary uplift in the means test thresholds. Northern Ireland has a de facto free personal care system but like Scotland has not addressed the issue of bringing more care monies into the system. Looking across these cases allows us to identify the factors that can reverse policy drift. We argue that the more incremental approach taken in Scotland has been more successful than the failed ‘big bang’ efforts in England. This provides insights into how England might more effectively more towards reform.

Patrick Hall is a Research Fellow on the ESRC Sustainable Care Programme and is based at the Health Services Management Centre, University of Birmingham and the University of Sheffield: Centre for International Research into Care, Labour and Equalities. He is the lead researcher on the Care in the Four Nations strand of the Sustainable Care Programme.

Catherine Needham is Professor of Public Policy and Public Management at the Health Services Management Centre, University of Birmingham. She has undertaken research on a wide range of issues relating to adult social care including system design, markets and funding mechanisms, and is a Co-Investigator on the ESRC Sustainable Care Programme.

Self-funders are people who pay the costs of their social care from their own resources. They are typically older people. At the start of their self-funding journey they tend to have limited understanding of social care. The growing evidence-base about the experiences of older self-funders and their families suggests people find the process of seeking and arranging care challenging. Self-funders often rely on friends and family for relevant information and advice, including financial issues. However, people’s networks of friends and family with relevant experience can be limited, which in turn limits people’s opportunities for gathering information from others’ first hand experiences.

This presentation describes qualitative research that aimed to: (1) add to current knowledge about older people who self-fund their social care; and (2) create an online resource of filmed extracts from interviews with self-funders or their carers talking about their experiences. The latter will form part of a new peer experience website called Socialcaretalk (https://socialcaretalk.org/), to be launched later this year. Socialcaretalk aims to help the public and professionals to understand social care in the UK.

Dr Kate Baxter

Kate’s research centres on social care for older people, with a focus on self-funders and their families. She is especially interested in self-funders’ experiences of navigating the social care system and how these experiences compare with older people in receipt of local council funding. She is committed to developing evidence-based resources to improve the experiences of self-funders, such as Getting informed, getting prepared. Kate is also interested in joint working between social care and other sectors, including the financial sector. Her earlier research in the Social Policy Research Unit focussed on personalisation, home care and personal budgets for older people. She worked previously in the Departments of Social Medicine and Primary Care at the University of Bristol on evaluations of primary care interventions and commissioning.

All persons have the right to adequate wellbeing at all stages of life. Many persons however live in deprived conditions globally. While wellbeing can be measured in various ways, the paper favours Sen’s multidimensional capability approach. Via this approach wellbeing is assessed in accordance to the freedom people have to achieve functionings which are things people do or be in life, for example, being sufficiently nourished and being included in society. In the paper, wellbeing is assessed among working-age persons with disabilities in Trinidad. A multiphase mixed methods design with three phases is employed: (i) an exploratory phase, (ii) an instrument development phase, and (iii) a convergent design. Functionings of importance are identified in the exploratory phase and used to develop an instrument in the second phase. The instrument contains both closed- and open-ended questions that measure wellbeing and collect information on its hindering factors, respectively and is administered in the final phase. The results indicate that working-age persons with disabilities in Trinidad were deprived in many areas, some of which are usually not captured in traditional poverty assessments, and moreover, provides insights on the societal changes required to ensure adequate wellbeing among them. Overall, the paper demonstrates the usefulness of the capability approach and mixed methods to assess wellbeing.

Drawing on an initial 2010 analysis of the reform and costs of adult social care commissioned by Downing Street and the UK Department of Health, this paper sets out projected future costs under different reform scenarios, reviews what happened in practice from 2010-19, explores the impact of the growing gap between need and funding, and explores the relationship between future spending and economic growth. In the process, it identifies a ‘lost decade’ in which policy makers failed to act on the warnings which they received in 2010, draws attention to the disproportionate impact of cuts on older people (compared to services for people of working age) and calls for urgent action before the current system becomes unsustainable.

Matthew Bennett is a Senior Lecturer in the Department of Social Policy, Sociology and Criminology, and co-leads a strand of work around care system costs and contributions as part of the ESRC Sustainable Care programme.

Jon Glasby is Professor of Health and Social Care and former head of the School of Social Policy, as well as a Non-Executive Director of an NHS Trust and a local authority children’s service.

The Care Act 2014 gave English local government a duty to ‘shape’ local social care markets. Qualitative data from eight local authorities show that multiple care markets require shaping within a locality (e.g. older people’s residential care; domiciliary care; day opportunities for people with disabilities). Grid-group cultural theory can be used to explain patterns of local authority market shaping, based on a four-part typology of rules and relationships: procurement (high state control, weak relationships with providers); managed market (high state control, strong relationships with providers); open market (low state control, weak relationships with providers); partnership (low state control, strong relationships with providers). Data shows that local authorities are using different types of market shaping in different parts of the market, and these are shifting over time. Challenges to the sustainability of the care system (funding cuts, workforce shortages, rising demand) are pulling local authorities towards high control approaches. These run counter to the Care Act’s emphasis on individual choice and control (most compatible with the open market), and co-production (most compatible with partnership). Some local authorities are experimenting with hybrids of these two low control approaches. However, the rival cultural biases of different types mean that hybrid approaches antagonise providers and risk further unsettling an unstable market.

Catherine Needham is Professor of Public Policy and Public Management at the Health Services Management Centre, University of Birmingham.  She has published a wide range of articles, chapters and books for academic and practitioner audiences, many of them focused on social care or the public service workforce.  Her most recent book was published by Springer in 2018 and entitled Reimaging the Public Service Workforce. She tweets as @DrCNeedham

This presentation deals with private companies involved in organizing so-called live-in care arrangements between EU member states, with a particular focus on Germany and Poland. Due to gaps of the public long-term care system, employing live-in migrant care workers in private households has become a widespread individual solution for growing long-term care needs in Germany. Since eastern EU enlargement, private brokerage agencies placing Polish live-in migrant care workers in German households have grown considerably. The analysis presents so far unique data of the field by combining an online survey among brokerage agencies with semi-structured qualitative expert interviews with agency heads and other political stakeholders. Building on approaches conceptualising the role of intermediaries in formalising domestic work, this research aims to provide a more fine-grained typology of private brokerage agencies, taking into account not only the legal environment and structural features of these private enterprises, but also their strategic positioning under conditions of high legal uncertainty in the EU multi-level governance system. By analysing corporate as well as political strategies of these intermediaries, we distinguish three different agency types we call pioneers, minimum effort players and followers.

Professor Simone Leiber

Simone Leiber is professor for social policy at the University of Duisburg-Essen in Germany. She has been a doctoral and postdoctoral researcher at the Max-Planck-Institute for the Studies of Societies, Cologne, and senior researcher at the Institute of Economic and Social Research at the Hans Böckler Foundation – a research institute funded by German labour unions. Her research interests are: comparative welfare state research with a particular focus on care polices.

Who cares? Financialisation in social care. 

Finance has permeated every layer of our economy and society. Testament to this is the growing control of big finance over social care. In the last few decades private provision of social care – in particular residential care – has become the norm, with large scale borrowing used by companies to buy up care homes across the county. But the evidence is increasingly clear that these business models, driven as they are by financialisation, are neither sustainable nor desirable. How did this happen? Why is it a problem? And, what do we do about it? These are the questions asked by IPPR’s recent research on the future of social care.

Harry Quilter-Pinner

Harry is a Senior Research Fellow in the Work and the Welfare State team.

He heads up IPPR’s flagship Better Health and Care programme which looks to shape policy in the UK on the NHS, social care and public health. He was a lead author on the independent cross-party Lord Darzi Review which shaped the NHS Long-Term Plan and recent NHS funding settlement. He has also led the organisations work on austerity and public spending, and contributed to research on education, welfare and environmental policy.

Harry writes regularly for the Guardian, Times, Independent and New Statesman, and has appeared on radio and tv, including Sky and BBC news.

In addition to his role at IPPR, Harry also works for LGBT Consortium, the UK’s LGBT+ sector body. He was previously Director of Strategy at SCT, a homelessness and addictions charity and has worked at Global Counsel, a consultancy firm, and at the British Foreign and Commonwealth Office (FCO).

He has a degree in economics from the University of York.

Carers and the failure of ‘identity’

The seminar celebrates the 55th anniversary of the founding of the carers movement; the 25th anniversary of the enactment of the first ‘carers’ recognition’ statute and 10th anniversary of the landmark European Court of Justice ruling in Coleman v. Attridge Law.

It considers the effectiveness of ‘carer recognition’ legislation, enacted in many jurisdictions over the last four decades – and questions the potential of such laws to radically address the profound disadvantage that many carers experience.

In his seminar Luke Clements suggests that identify based approaches, aimed at protecting the rights of unpaid carer and of taking them to a ‘socially just’ destination have not delivered and are unlikely to.

Luke Clements is the Cerebra Professor of Law & Social Justice at the School of Law, Leeds University.

Luke was involved in the drafting of the Westminster Bill’s that became the Carers (Recognition and Services) Act 1995 and the Carers (Equal Opportunities) Act 2004, as well as acting as the expert adviser to the Joint Parliamentary Select Committee scrutinising the Care & Support Bill 2013.

He has written widely including a comparative analysis of global carer rights laws – L Clements ‘Does your carer take sugar?’ in the Washington and Lee Journal of Civil Rights and Social Justice (2013) Volume 19 pp 397 -434.

A brief biographical note is at https://essl.leeds.ac.uk/law/staff/184/professor-luke-clements  

A sustainable care sector depends not only on sufficient funding, but also on the ways in which finance is sourced and used by providers. This research identifies changing uses of debt and real estate assets among large care home companies. It explores the implications for care workers, the built environment of care homes, and the stability of the sector. Findings are based on analysis of corporate reports and interviews with investors, carers and managers. Theoretically, the study is informed by care ethics and critiques of financialisation. Overall, I argue that certain financial strategies have made the sector more fragile, and a different approach is needed to ensure universal access to good care and decent employment in the sector.

Amy Horton joined UCL as a lecturer in economic geography at UCL in 2017, after completing a PhD at Queen Mary University of London. Her research examines the intersections of finance, care and labour. In particular, she investigates the financing of care homes and strategies for organising by care workers and wider movements, in both the UK and US. Previously, Amy worked as a policy researcher and campaigner in NGOs focusing on the international financial institutions, financial regulation and human rights.