Publications from the Sustainable Care team

How best to support people who combine paid work with caring for a family member or friend is an urgent issue. The number of working carers has been rising as demand for care (more people living with disability, poor health, or into extreme old age) has increased, while public funding for care services has been sharply reduced. As workers are urged to stay in work for longer, the need to combine work and care will only increase. Today, according to Carers UK, already 1 in 7 workers combine work and care (Carers UK, 2019).

Working carers make a major contribution to society. It is important to understand the pressures they experience and the impact working and caring has on them and their families, so that employers can offer them good support in their daily lives.

Through its membership of the Employers for Carers Forum, the Ministry of Justice (MoJ), was invited to contribute to an ESRC-funded research programme based at the University of Sheffield, the Sustainable Care: connecting people and systems programme. This explores how care arrangements can be made sustainable. It focuses on adults living at home with chronic health problems or disabilities and their families, carers and paid workers. It is delivered by eight universities and Carers UK, led at the University of Sheffield by Professor Sue Yeandle.

This report was written by PhD candidate Camille Allard, based on a case study of the MoJ, conducted under the supervision of Professor Sue Yeandle and Professor Jason Heyes.

Unpaid carers support people who need help to manage everyday activities, usually because of illness, disability or advanced age. Research shows that, even in normal times, providing care tends to have negative effects on their financial situation and participation in paid employment.
In March 2020, during the COVID-19 pandemic, the UK Government introduced restrictions to protect the population, including closing many places of work, and ‘furlough’ and other financial measures. Many people with serious illness, disabilities or considered vulnerable became more reliant on others as the first wave of the pandemic took hold, and provision of unpaid care increased.
This third report in the Sustainable Care programme’s Care Matters Series looks at carers’ financial wellbeing, their hours of paid work – before and during the pandemic – and their experience of the Government’s furlough scheme in April and May 2020. Where possible, we compare available data with information about the pre-pandemic situation, measured in 2017-2019. The report is based on the responses of a large, representative, sample of the UK’s population collected in the Understanding Society panel study. As we noted in our first Care Matters report, in April 2020 an estimated 799,583 carers reported COVID-19 symptoms, and 60,180 carers had been tested for the virus.
Caring is a common experience, as we showed in Will I Care? (2019). Many previous studies have reported a link between financial hardship and caring; this new report highlights their poorer ‘financial wellbeing’, based on their assessment of how they are managing financially and their expectations about how well off they will be ‘a month from now’. In May 2020, 1.3 million carers supporting a relative or friend living in a separate household were under a degree of financial pressure, with women and carers aged 31-45 particularly affected.
Carers’ financial worries were greater in April than in May 2020, showing the Government’s urgent measures were helpful to some. However male carers and carers aged 17-30 were more likely than others to be on furlough, so carers’ access to paid work and to secure incomes in the months ahead is an issue Government and employers must focus on.
We shared our findings with our programme partner Carers UK, whose campaign Fairer for Carers calls on Government to increase Carers Allowance and other financial support for carers. You can see their comments on our findings and recommendations at the end of the report.
COVID-19 has brought huge changes for everyone, putting care under the spotlight as an issue of enormous importance that affects families and communities up and down the country. We hope this report will increase awareness of the pressures carers face as they support others. Their greater exposure to financial strain and their greater level of anxiety about future incomes and access to paid work should be a concern for us all.

Unpaid carers support people who need help to manage everyday activities, usually because of illness, disability or advanced age. In the early months of 2020, as the COVID-19 pandemic spread across the UK, Government introduced ‘lockdown’ measures that restricted people’s movements and their freedom to spend time together. These measures, and the priority given within the NHS to treating people with COVID-19, also affected access to health and social services.
This second report in the Sustainable Care programme’s Care Matters Series looks at carers’ experience of feeling lonely and at their use of health, social and community services in April and May 2020. It explores the responses of a large, representative, sample of the UK’s population collected in the Understanding Society panel study. Where possible, we have compared data on these topics with information on the pre-pandemic situation. As noted in our first Care Matters report, an estimated 799,583 carers reported COVID-19 symptoms in April 2020, at which point 60,180 carers had been tested for the virus.
Caring can be a lonely experience, as shown in other research, including the Getting Carers Connected and The World Shrinks reports produced by our programme partner Carers UK in 2019. This new report shows that 1 in 3 female carers reported feeling lonely in May 2020, and that carers were more likely to have felt lonely than other people.
The report also shows that during the lockdown, 9 in 10 carers awaiting an NHS treatment had it postponed or cancelled. Carers also found it more difficult than other people to get in-patient services, to access their GP or to use the vital NHS111 service. Beyond the NHS, half of carers who needed formal care could not get this support. The Government’s policy of ‘protecting the NHS’ did not, it seems, extend across all the services it provides, or to crucial services needed in the community.
We shared our findings with Carers UK. Their comments on the study findings and recommendations for Government and policymakers on how the difficulties it highlights can be avoided in future are included at the end of the report.
COVID-19 has focused new attention on the importance of care. As this new report shows, some of the restrictions Government introduced in spring 2020 had troubling effects on carers. We hope the report will raise awareness of this situation so that, in any similar future scenario, carers can be protected from feeling lonely and from being unable to access crucial health and care services.

This report addresses a vital issue of our time. Growing numbers of employees provide regular care  for relatives or friends who need their support because of serious illness, a disability or problems that affect them in daily life. In 2020, as working lives were disrupted by a global pandemic, and the support needs of older people and those with chronic health  conditions and disabilities were drawn to everyone’s attention, the crucial importance of working  carers’ dual role came into sharper focus.

Evidence from around the world has previously shown that, without support, the challenges employees  face in combining work and care are stressful and debilitating, and can lead workers to quit their  jobs, with lifelong consequences for incomes and careers. Many employees care for others selflessly  and willingly, and case studies of ‘carer-friendly’ employers have revealed many simple steps  organisations can take to support them, with benefits for employers too¹.

What has not previously been known is the difference such support makes, and how it affects  employees in different employment and caring situations. This report represents an important step  forward in the evidence base about working carers in England and Wales. It is a key output of the  Sustainable Care: Connecting people and systems programme that I lead, and builds on our team’s past work² and the experience of our international partners.

The report presents detailed findings of the first UK study based on a representative sample of  working carers. Written by my colleagues at the University of Sheffield, Dr Annie Austin and  Professor Jason Heyes, and prepared in collaboration with the CIPD, which generously resourced the  costs of the survey, the report explores the experiences and attitudes of working carers who do,  and who do not, receive support at work to manage caring and employment.

Their study measured how these factors affect working carers’ wellbeing, at home and at work, and  explored the choices they had made. Some of its findings are shocking. I urge you to read this  important report, and if you are an employer, manager, supervisor or employee, to use it as a guide  to action. Working life, and the circumstances of employees, organisations and businesses, can all  be improved by responding to its evidence-based recommendations.

¹Eurofound. (2015) Working and caring: reconciliation measures in times of demographic change. Luxembourg: Publications Office of the European Union.
²Carers, Employment and Services: time for a new social contract?

Unpaid carers support people who need help to manage everyday activities, usually because of illness, disability or advanced age. Research shows their contribution often has negative effects on their finances, health and everyday activities.¹

In spring 2020, as the COVID-19 pandemic reached the UK, Government introduced sweeping restrictions intended to protect the population. Numerous people, including those ‘shielding’ due to pre-existing conditions, became more reliant on others, and millions responded to others’ needs, some facing difficult pressures in doing so.

This report looks at carers’ use of foodbanks and experience of hunger in April 2020, and at changes in their mental wellbeing. It uses latest data, based on the responses of a large representative sample of the UK’s population collected in the Understanding Society panel study. Our estimates based on Understanding Society’s COVID-19 survey (April 2020) indicate that 799,583 carers supporting someone outside their own home had reported COVID-19 symptoms and 60,180 had been tested for the virus.²

The association between socio-economic deprivation and caring, and between caring and poorer mental and physical health, has long been evident in research on carers.³ In Will I Care? (2019 ), we showed that caring is a common experience. Greater responsiveness to the needs of families, neighbours and friends is one of the few positive outcomes of the COVID-19 pandemic. In April 2020, 2 in 3 people aged 70+ – and 1 in 3 of all people – received help from family, friends or neighbours.⁴

The findings in our new study should worry us all. During the pandemic, carers – especially women and those in some age groups – are reporting more hunger in their households, and are twice as likely to use food banks, compared with other people.

Their mental wellbeing has deteriorated since before the pandemic and is lower than that of others. We shared our findings with our programme partner Carers UK, whose 2020 Carers’ Week campaign stresses the importance of Making Caring Visible. Carers UK comments on our findings and makes recommendations at the end of this report.

COVID-19 has brought huge changes that underscore the need for a step-change in support for carers. It cannot be right for carers to be hidden from view with declining mental wellbeing or to face hunger and food poverty as they care for those among us who need support in these challenging times. At a time when the Covid-19 pandemic compounds the well-documented pressures they already face, we hope this report will increase awareness of carers and their circumstances.

¹ Carers UK (2014) Caring and Family Finances Inquiry; Yeandle, S. and Buckner, L. (2007,.Carers, Employment and Services: Time for a new social contract.
² Estimates are provided in Table 1.
³ Tseliou, F. et al., (2019) Mental health of carers in Wales: a national population survey, The Lancet, Meeting Abstracts 394: S92 https://doi.org/10.1016/S0140-6736(19)32889-2; Pinquart, M. and Sörensen, S. (2003) Differences between caregivers and noncaregivers in psychological and physical health: a meta-analysis, Psychology and Aging, 18: 250–67; Vitaliano, P.P., Zhang, J. and Scanlan, J.E. (2003) Is caregiving hazardous to one’s physical health? A meta-analysis, Psychological Bulletin 129: 946–72.
⁴ Benzeval,M. et al. (2020), Understanding Society COVID-19 Survey. April Briefing Note: Health and Caring, Understanding Society Working Paper 11/2020, ISER, University of Essex.

• Our research aimed to understand experiences of ageing and access to care and support.
• We interviewed people born in the Caribbean, Ireland and Poland who arrived in Britain as young people and who are now retired.
• Most participants were over 80 years old and were experiencing a range of complex health issues related to older age.
• All participants were living in their own home or in sheltered housing.
• We focused on two areas – London and South Yorkshire.
• This report communicates our key findings to those who participated in the research and to the community organisations who support them. The report is the starting point for a process of co-producing recommendations with key stakeholders, including older migrants.

In 2019, as part of a study on Migrant care workers in the UK, we launched a Delphi Survey to generate possible scenarios to guide future statistical modelling of the migrant home care workforce in the UK. The aim of the modelling will be to explore what the future role and composition of this workforce could look like after Brexit, within the context of wider sectoral challenges. The present report summarises the responses received in Round 1 of the survey, which were collected in the first phase of the larger study.

Caring is vital for us all and a precious support for those we love at critical times. Provided by millions of women, care also features strongly in the lives of men. Yet too often carers pay a heavy price for the support they give – financial strain, poorer health, social isolation.

We know from past research¹ that caring occurs across the country and that many carers are people of working age. ‘Working carers’ are found in every occupation and all industrial sectors. We know reliable and flexible services for those they support are most carers’ top priority. And that when good support is available, it makes a difference^2.

In 2015, in another joint report, we showed carers were doing more than ever to support others, providing care worth £132 billion a year – similar to the total cost of our NHS³. Carers are thus both the backbone of our health and social care system and provide its ‘life support’.

Carers’ organisations have long used research to secure rights for carers – their rights to claim Carer’s Allowance; to have their own needs assessed; and to request flexible work.

The findings released in this report add crucial new data. Past studies have often relied on ‘snapshot’ data (which capture a moment in time), or research that shows what caring means for individuals but that is not representative of the whole population. Our new findings are from the highest quality UK surveys, based on data collected over decades from large representative samples of people regularly asked about caring and other aspects of their lives. We hope this new analysis will also contribute to achieving progress for carers, who, across the UK, urgently need better services and more support to manage work and care.

I am grateful to Dr Matthew Bennett and Dr Yanan Zhang, University of Birmingham, for the statistical analysis in this report. Both are members of a large team working with me, and in close partnership with Carers UK, in the Sustainable Care: connecting people and systems research programme.

¹ Sue Yeandle and Lisa Buckner (2007) Carers, Employment and Services: time for a new social contract?, Published by Carers UK
² Sue Yeandle and Andrew Buckfield (2011) New approaches to carers’ health and wellbeing: evidence from the NCS Demonstrator Sites programme
³ Sue Yeandle and Lisa Buckner (2015) Valuing Carers 2015: The rising value of carers’ support, Published by Carers UK

What role can wider use of technology in care at home – and emerging developments in advanced technology – play in bridging the UK’s growing care gap?

Policymakers and sector leaders often present technology as a solution to challenges in social care, yet the place of technology as a source of future sustainability is far from clear. James Wright, Kate Hamblin and Matthew Lariviere draw on their ongoing research to explore the potential for technology to address issues of sustainability, wellbeing and care quality.

Key messages
Some 168,000 British people are resident, and receive their British state pension, in Spain. Many more live in Spain on a permanent or semi-permanent basis but are not registered in Spain as residents. Many migrated years or decades ago and now have care needs. Their family or other support networks may provide financial or emotional support but are often in the UK and cannot provide proximate care. Most older British people cannot speak Spanish and struggle to access help from Spanish social services; as a result most formal care is obtained through British care companies with individuals paying privately. Those on low incomes and with few assets or savings who need help cannot afford care, leaving Britishrun voluntary organisations to ‘step in’ and organise and/or pay for care.
About the study
This study explored how older British migrants in Spain experience ageing, investigating their wellbeing, access to and experiences of care. We interviewed 34 older British people living in the Costa del Sol in February 2019. They had lived in Spain for between 3 and 47 years (on average for 18 years) and most were approached through British-run voluntary organisations in Spain (which may affect our conclusions). Their ages ranged from 58 to 95 years (average age 78 years). Ten were men and 24 were women, and they included people receiving personal care or support in the home, people providing unpaid care to a family member and people not receiving care but who may do so in the near future.
The research described in this Policy Brief was undertaken in 2018-19 by Dr Kelly Hall, University of Birmingham. It is one of several studies being undertaken by our team researching Care ‘In’ and ‘Out of’ Place: Towards Sustainability and Wellbeing in Mobile and Diverse Contexts, as part of the ESRC-funded Sustainable Care: connecting people and systems programme.

This Policy Brief outlines early findings from a new study of migrant labour in England’s homecare sector led by Professor Shereen Hussein at the University of Kent. The study forms part of the wider Sustainable Care: connecting people and systems research programme, and draws on:
• A review of existing evidence about migrant care workers in the UK
• A survey of 32 people with expertise and knowledge of social care and migration, focused on issues of demand and supply
• Interviews with 25 migrant homecare workers
• Ongoing comparative analysis of the sustainability of migrant care work in eight countries, to be reported separately.
Data were collected, in 2019-2020, at a time of uncertainty associated with the UK’s departure from the European Union, its future immigration system, and ongoing challenges in adult social care.
Key points to inform debate
• Migrant care workers have been important in homecare for over a decade
• In the short-to-medium term, and in some regions, the sector will remain reliant on migrants to fill vacancies
• Demand for migrant homecare workers is driven by local labour shortages in a context of uncompetitive and unattractive employment conditions
• Past acute workforce shortages in homecare occurred despite unrestricted access for EU workers
• Immigration rules and visa systems affect the number and types of migrants attracted to the sector
• Live-in care, a growing market segment, attracts high proportions of migrant care workers. If migrant workers’ rights are restricted, the risk of exploitation in this segment could be high
• Given the expected continued and increasing demand, urgent consideration should be given to introducing a sectoral visa scheme.

The concept of wellbeing has been included in policy literature in the four nations of the UK since the early 2000s, with a specific focus on social care from around 2011 (although there was reference to wellbeing as early as 1968 in the Seebohm report which recommended the creation of local authority social services departments to “enable the greatest possible number of individuals to act reciprocally, giving and receiving service for the well-being of the whole community” [p180]). Two main waves of political interest in wellbeing have been identified. The first, in the 1960s, highlighted that Gross Domestic Product (GDP)/ Gross National Product (GNP) were imperfect means of measuring how well a society is functioning. It sparked an interest in developing other social indicators, stalled in the 1970s (as nations entered recession) and re-emerged in the 1990s as interest in wellbeing, including in developing countries, revived.

In the UK, Prime Minister David’s Cameron’s 2010 speech on wellbeing and the need for more precise measurement of the concept is seen as a key point in establishing wellbeing as a policy priority. A so-called ‘watershed’ speech, it called for measures of wellbeing to assist in assessing Britain’s progress in more than merely economic terms. Cameron challenged three notions. First, he refuted the idea that wellbeing is a distraction from the ‘urgent economic tasks at hand’, citing Robert Kennedy. Second, he contested the notion that improving wellbeing is ‘beyond the realm of government’, citing Joseph Stiglitz and Amartya Sen. Third, he questioned the idea that wellbeing is a woolly, poorly defined concept and thus hard to measure. In response, the UK’s Office for National Statistics created a national programme to develop measures of wellbeing and an ensuing national debate on ‘what matters to you’ led to the development of a national wellbeing measurement framework with objective (e.g. employment, life expectancy) and subjective (e.g. life satisfaction, anxiety, meaningfulness) measures.

This review summarises main policy developments on wellbeing in the field of adult social care since 2000 in the four nations of the UK.