SUE YEANDLE, PROFESSOR OF SOCIOLOGY AT UNIVERSITY OF SHEFFIELD; AND PRINCIPAL INVESTIGATOR AT ESRC (ECONOMIC AND SOCIAL RESEARCH COUNCIL) CENTRE FOR CARE – SUPPLEMENTARY WRITTEN EVIDENCE (ASC0153)

During the Committee’s Oral Evidence session on 25 April 2022, members of the Committee requested further information from me about a number of points. I provide this, as far as I am able below, with supporting links and references where relevant. This additional evidence is provided under 9 headings.

1.    Categories of support that are helpful to people in employment who are carers

In 2018, I prepared a paper, ‘Work-care reconciliation policy: Legislation in policy context in eight countries’ for the German Government. This presented a policy framework (below) based on international evidence from the UK, Australia and Canada.

How elements of the framework interconnect is crucial:

-          Recognition and rights are fundamental, and need to underpin all other actions, expenditure and policies

-          Services for people in need of support and for carers are vital, especially as the ratio of people providing care to people receiving care shifts with population ageing;

-          Work-care reconciliation measures that are flexible and widely available are needed to keep employees attached to the labour force, deploying their skills and experience and making the contributions on which employers depend for organisational and business success;

-          Public financial support for carers (which some people with demanding care roles may always need) can be kept fiscally manageable only if most working carers remain in work, contributing to public systems of taxation and insurance.

Work-care reconciliation measures can be put in place in workplaces in several ways:

-          Through employer initiatives

-          Via arrangements negotiated by workers, managers and trade unions

-          In response to changes in employment law.

These measures include:

-          flexibility in where, when and how often people work;

-          options to take time off from work when care demands are time-sensitive or high;

-          information, guidance, counselling and support arrangements, to which employers may allocate modest resources, including training programmes for managers on how to manage employees with care responsibilities.

Work-care reconciliation arrangements typically involve a hierarchy of reconciliation measures, including:

• Care leave options: paid and unpaid. Some schemes have ‘cost-sharing’ arrangements between employers, workers (with and without care responsibilities), governments and families.
• Flexible working options: some arrangements offer salary stability (varying when and where, but not how much work is done); others offer reduced hours/workload/pay while caring, but compensate for lost earnings through public- or insurance-funded payments (or private resources), or by arranging loans. (Simply working part-time leaves carers worse off financially.)
• Job protection and return to work guarantees: these aim to ensure time away from work to care (or arrange care) do not jeopardise career trajectories, job security or promotion prospects.
• Pension and employment insurance protection: This ensures carers who reduce employment, fully or partially (temporarily or permanently) do not miss out on work-related benefits.

I have argued previously that for any nation, a MIX of options, or ‘suite of measures’ is important:

The ‘right to request flexible working’ (pioneered in the UK and now adopted elsewhere including in Australia and New Zealand) offers carers choices about where, when and how often, paid work is done, but is only meaningful for workers who are employees (those on zero hours contracts or in casual employment, and the self-employed do not benefit from this). It does offer a long-term solution for some carers, but usually involves loss of pay (Germany has experimented with compensating workers using loans). Flexible working usually reduces carers’ income, often with lifelong effects in terms of lifetime earnings and reduced retirement pensions.

Short-term / emergency leave that is job-protected exists in the UK as well as in countries like Canada, Finland and Sweden (where it is unpaid). France, Australia, Poland and Slovenia all have leave of this type which is paid or compensated. (This is usually introduced to help carers dealing with unforeseen crises, but is also needed to support carers who need to accompany those they care for to appointments (health, care, etc., which can be inflexible and offered with only short notice).

Longer-term leave has been introduced in the UK only on a voluntary basis by a few organisations. Legislated leave of this type exists in an increasing number of other countries. Examples include:

End of life leave: Canada and Sweden have Compassionate Care Leave; Italy has Special Leave. These arrangements are compensated at a proportion of usual earnings.

Care to manage caring transitions/make arrangements: This is well-established in Japan, where it is available to support eligible family members for up to 93 days, compensated at 67%.

A few countries have arrangements that enable long-term leave to support a relative during challenging treatments (e.g. for cancer) or to support recovery (e.g. stroke, RTA).

Numerous studies, in many countries, show that the support and understanding of colleagues and line managers is important. Some UK companies (including many that are members of the Employers

for Carers forum administered by Carers UK) offer low-cost workplace support, including carers’ passport schemes, carers’ networks, benchmarking and kitemarks. In some localities Cares’ Charters have been agreed with businesses; in Canada the Canadian Standards Organisation, working with McMaster University, has established a standards scheme to support working carers that is under consideration as an International Standard by the ISO (International Standards Organisation).

2.    Compensating or paying carers who take leave to provide care

Almost all developed nations now recognise this as a major challenge.

-          Australia’s National Employment Standards provide for 10 days paid Personal/Carer’s leave – although this is not accessible to casual workers.

-          Canada has Compassionate Care Leave (and a Compassionate Care Benefit); plus, in some Canadian jurisdictions Family Responsibility Leave.

-          Finland’s Employment Contracts Act offers job-protected care leave and longer-term options

-          France has Family Solidarity Leave (for End of Life caring, shareable between family members) as well as unpaid Family Support Leave and Carer’s Leave

-          Germany has Family Care Leave – short-term absence plus a Carers Grant (for up to 10 days); as well as Carer Leave (up to 6 months), with interest-free advance option); and Carer Leave, offering partial release from normal work for up to 2 years (worker continues to work for minimum 15 hours pw), with an interest free loan available.

-          Italy has Special Leave (Congendo Straordinario) - compensated for up to 2 years

-          Japan has Family Care Leave – compensated at 67% (Employment Insurance scheme), up to 93 days per eligible family member; employers must offer at least one of: reduced working hrs; flexi-time; limit on extra hours working. The MHLW, to prevent workers having to quit jobs, took measures to enhance care service provision (home and facility) and to enhance consultation and support services for working families.

-          New Zealand has a Right to Request Flexible Working (to which employees are entitled from day one of their employment) plus Bereavement Leave

-          Poland has 14 days co-resident care, once per year, compensated by a Carers Allowance (80% basic salary)

-          Slovenia has up to 7 days per sickness episode of a relative, compensated (at 80% of the previous year’s earnings)

-          Sweden has Compassionate Care Leave - up to 100 days (240 days in cases of HIV), shareable by several carers, compensated at 80% of usual salary level (via Social Insurance).

-          Within the EU, the Social Pillar of Rights means all member states are offering a minimum of 5 days carer’s leave from 2022 (in some cases this is unpaid).

My team addressed this point in its 2020 submission to the Department for Business Energy and Industrial Strategy’s Consultation on Carer’s Leave. The paragraph below is adapted from this:

“The UK currently lags behind established practice in other comparable economies on this issue. (At least) seven other countries (have) approaches to carers’ leave, … and offer more generous leave (than is proposed for GB), in terms of the time that can be taken away from work, albeit in most cases in specific, rather serious care situations, and in some cases terminal illness. …

Most of these countries also compensate the employee, via employment insurance (EI) or welfare benefits (e.g. Sweden 80% of salary [Compassionate Care Leave]; Japan 67% [via Employment Insurance and Family Care Leave]; Canada 55% of usual earnings [Compassionate Care Benefit]). Australia [Personal/Carer’s Leave] and Italy [Congendo Straordinario] have legislated for employees to be paid normal (base pay rate) wages during carers’ leave. The Australian example (up to 10 days leave p.a.) is in some ways

similar to that proposed for GB, as it is rather flexible with regard to both the care situation and how leave may be taken.

We urge Government to consider introducing some form of compensation for persons taking carers’ leave. Costs could be covered through a small increase in NI, and employers could use their payroll systems to enable employees to take carers’ leave without total loss of wages.”

3.    'Triggering factors' that can make continuing in work difficult for carers

It is difficult to generalise about these, because there are many variations in the onset, pattern and circumstances of caring. However factors likely to make continuing in work difficult include:

-       Sudden and unexpected onset of a demanding caring role. This is likely to be the outcome of a major accident (e.g. a RTA or serious accident at home or at work), or an acute illness (e.g. stroke or heart attack). When such an event happens the person’s spouse (or a son or daughter or parent, depending on the person’s age) may feel they must immediately transfer all their energy and attention to their loved one’s needs for support. This is why support for carers in the run-up to hospital discharge is so important. Many such carers will have no prior knowledge or experience of the ASC system and will feel extremely upset and stressed. Without good advice on their options and the support they are entitled to, carers in this situation may decide they have to give up work, without a full understanding of the long-term impact this will have on them

personally and on their family’s finances, of what support they are entitled to, and how this could make continuing in work, perhaps on a reduced hours basis, possible.

-       Episodic need for intense caring support. Some carers support a person (often a spouse or a son or daughter) whose mental health or other support needs fluctuate between periods when the person is well and managing their own needs, and periods when they are seriously ill, perhaps dangerously so and at risk of serious self-harm or suicide. These carers are likely to find it extremely difficult to manage work and care unless the person they assist gets suitable support from mental health or other relevant services. Given the current situation, in which there are waiting lists for such support and serious concerns about timely provision of support, some carers caring for a person with such needs will find combining work and care very difficult.

-       Inadequacy or unreliability of care services. Many carers support a person whose need for support increases over time. This can apply to carers of a child with certain progressive diseases, to carers of a spouse with a condition such as MS or motor neurone disease, and to carers of an older person, particularly those caring for someone with cognitive impairment (such as various

types of dementia) or diseases such as Parkinson’s. These carers are likely to be supporting a person whose disease or illness trajectory, often over several or many years, moves from a period in which they can manage most aspects of daily life well through stages in which almost every aspect of daily life, including their own personal care, becomes very challenging or impossible.

For these carers, managing work and care successfully is often possible for a long time and in the context of the person having suitable and reliable home care services in place. If these services break down, are of poor quality, or are withdrawn (all of which are known problems in the current system), the carer will find continuing in employment difficult, and a sudden escalation of problems or a specific crisis may trigger a decision that they must give up paid work to ensure the person has adequate support.

4.    Feelings among some carers that they cannot trust or rely on services for support, impeding their ability to work

This point is covered in my team’s written response, which draws on both our knowledge from research and the discussion meetings we held to support our response to the consultation with carers, care workers and people with lived experience of using ASC services. Across my experience (some 25 years) of researching carers’ circumstances and views, and in my role as Editor in Chief of the International Journal of Care and Caring, I know this is something carers often mention in studies. We researched it specifically in a major study (the Carers, Employment and Services study) that asked 1,442 carers (946 in England, 206 in Wales, 290 in Scotland) about services they received or would like. Of these 1,442 carers, 35% said the person they cared for was not receiving any services. Asking them about factors that limited their use of services produced the figures shown below:

(Source: Yeandle, S., Bennett, C., Buckner, L., Fry, G. & Price, C. (2007) Carers and Services in their Local Context, CES Report No. 4, London: Carers UK)

As shown in the table above, a perception that services lacked flexibility and sensitivity to needs, reluctance to use services by the person concerned, along with the cost and organisation of services were all mentioned by over a third of those asked.

We hope to include a similar question in the new survey of carers that we are currently working with Government departments (DHSC, DWP, BEIS and the ONS) to develop. I consider it quite possible that a similar (or possibly even stronger) response would be received today. Recent studies have also reported that people find short, ‘time and task’ homecare visits (still widely used in services commissioned by local authorities) difficult and unsatisfactory. Ed Ball’s 2021 BBC TV programme (Inside the Care Crisis), in which he shadowed a care worker, provided a striking example of this.

5.    Ethnic variations regarding caring and combining work and care

It was clear from the 2001 Census (the first to capture data on caring), that patterns of combining work and care vary between women and men, as the figures below, taken from a report produced by CIRCLE show. 74% of male carers were then in employment, compared with 60% of female carers, with men much more likely than women to be working full-time when combining work and care. The figures below do not show carers’ ethnicity but offer useful context for this question.

Source: Yeandle, S. & Buckner, L. (2007) Carers, Employment and Services: time for a new social contract?

In the same report, we also showed how patterns of care and work varied by ethnicity. Figures showing these variations are shown overleaf.

Comparable analysis does not appear to have been conducted on data from the 2011 Census, although we now have plans to do this as part of new work in the ESRC Centre for Care (which will compare data from the three Censuses in 2021, 2011 and 2021 once the most recent data becomes available).

To explore the Committee’s interest in ethnicity and caring, I reviewed 2011 Census data available from the ONS, from which I have produced the Tables A and B below:

Table A

Table B

Source for both tables: Census of Population, 2011 (England and Wales), Office for National Statistics (https://www.ons.gov.uk/peoplepopulationandcommunity/populationandmigration/populationestimates/adhocs/004062 ct04152011censussexbyagebyethnicgroupbyprovisionofunpaidcarenattocountry)

Likelihood of being a carer is affected by many factors, which include age, sex, prevalence of disability within the family and/or household, and norms regarding gender roles. As can be seen from the tables above, the % of adult women (aged 25+) who were carers was highest among the Pakistani, White British, and Bangladeshi populations.

Analysis of data on caring according to the occupation and industrial sector in which people work shows that caring is prevalent in all types of employment. However occupations and industries with more women and with more older workers tend to have more working carers among their workforce.

6.    Challenges carers face re coordination of the care needed by the person they support

This topic also addressed in the written response from my research team at the Centre for Care.

Dealing with different organisations with responsibility for the support needed by the person cared for - in NHS hospitals and primary care services, in local authority social services, and provided by independent care agencies, personal assistants, pharmacists, occupational therapists, district nurses, podiatry services, mental health services, dentists, providers of assistive technology and mobility aids (to name only some) – is often time-consuming, stressful and exasperating for carers, who are also likely to be managing the personal administration of the person cared for (dealing with banks, utilities, insurance companies and others). Even where health and social care services are nominally ‘integrated’, inadequate communication between different sources of support for the person with care needs is often a frustration, requiring considerable time and effort to resolve - as many people who have supported an older person with changing needs will know.

Japan’s long-term care system includes a role for care coordinators, which is described in a recent report by Natasha Curry, Sophie Castle-Clarke and Nina Hemmings for the Nuffield Trust, ‘What can England learn from the long-term care system in Japan?’:

“How is care delivered?

Once an individual is deemed eligible for LTCI services, they are assigned a care manager who is then responsible for working with the individual to agree a package of care that meets their needs, within the budget available. The allocated budget for long-term care can only be used to purchase services and is not available as a cash allowance. Service users are able to ‘top up’ their care and buy services beyond those provided under the scheme, although few do.

The care manager, in partnership with the individual, is responsible for designing, monitoring and overseeing care plans. Care managers were introduced as part of the LTCI reforms to empower individuals to make choices and decisions about their own care – this had previously been done by bureaucrats (Tamiya and others, 2011). The care management fee is paid by the LTCI system and users are not required to contribute.

Care managers typically have a caseload of around 30 individuals. The majority of care managers are employed by providers of services, although they are obliged to ensure they do not purchase care solely from their employer. If a care manager is found to have purchased more than a prespecified proportion of care from a single provider (usually 80%), the fee paid to the care manager is reduced. Individual recipients can opt to change care managers at any time. To qualify to be a care manager, five years of prior care work is required. This could be as a nurse, a carer, a social worker or associated profession. A further qualification is then required to become a care manager.”              (Curry et al 2018: p19)

7.    Paying family members to be full-time carers (examples from other countries)

In a few countries, a carer who is caring full-time can be registered as such, and paid for carrying out the role1. Examples of this type of arrangement are found (for some carers) in Finland and Sweden.

1 This is different from the UK’s Carer’s Allowance, which although only payable to persons caring for at least 35 hours a week for a specific person in receipt of a disability or other specified benefit (currently £69.70 pw), is not meant to be a wage for caring, but is a (non-means-tested) payment that contributes to their income (provided any earnings from work they do are £132 or less pw after tax, NI and expenses) and ‘recognises’

Finland: An Act on Support for Informal Carers came into force in 2006 (updating arrangements first introduced in 1984). This set out criteria against which Finnish municipalities may contract with family carers. It defined their minimum pay rates, gave them pension and accident insurance, and entitled them to 3 days per month free of caring responsibilities. Data supplied to the international NGO Eurocarers by its Finnish members (https://eurocarers.org/country-profiles/finland/) explains:

“Informal care support is paid to a relative who provides care at home for an elderly person, or a person with a disability or a chronic disease. Municipal informal care support demands a contract between the municipality and the caregiver. The amount of the support is linked to the intensity of the care needed. If the caregiver is unable to

work due to heavy care obligations, the minimum amount is €826.90 a month, and in

the case of less intensive care the minimum is €413.46 a month. The support is treated as taxable income and it accrues pension rights (although the accrual rate is small). This informal care benefit also includes municipal services for the care-receiver needed to make care at home possible. These can consist, for example, of help with washing, medical care or meals on wheels. In addition, these official informal carers are insured for accidents and, most importantly, get days off. A carer doing demanding care work gets three days off per month. Municipalities may also offer institutionalised care at intervals, in order to give the informal carers some rest. Some carers space out their time according to these intervals. Since 1 July 2016 municipalities have also been encouraged to arrange social and health services for informal carers in order to support their work. From 1 January 2018 informal carers are provided with coaching related to their caring duties. At present, there are approximately 50,000 informal carers who have a contract with their municipality and receive the informal care allowance and support, out of which approximately 60% are pensioners. However, it has been estimated that an additional 300,000 people help their old, sick and disabled relatives.” (my emphasis)

Note: Finland has enacted legislation reforming its social and health care arrangements, under which responsibility for care will transfer from municipalities to new ‘wellbeing services counties’ in 2023. (See https://soteuudistus.fi/en/health-and-social-services-reform for details.)

Sweden: Swedish legislation allows municipalities to make their own decisions about many aspects of care arrangements. It permits them to pay a ‘carers allowance’ (anhöriganställning) if they choose. Information provided by Swedish carers’ organisations to Eurocarers explains:

“(This) is actually not an allowance: the municipality employs a family member to do the care work. Carers allowance is taxed, and gives the same salary and similar social security as for home-help workers in the municipality’s own services. It is not possible for a person who is 65+ to be employed. This programme is also a matter for the local municipality to decide on, i.e. no national/federal regulation exists. The opportunity to be employed as a carer by the municipality is far from being the preferred choice by municipalities. However, in certain circumstances, e.g. older people living in a remote area with a child in need of care living nearby, this can be a preferable arrangement for all involved. Another typical situation when the carers’ allowance is used is to provide services and care to older immigrants, where the municipality does not have care personnel with the necessary language and cultural skills and therefore employs a child, typically the daughter, living nearby.

their contribution as an unpaid carer. Carer’s Allowance is subject to DWP ‘overlapping’ benefit rules and thus is not payable to anyone in receipt of another (higher) state benefit or state retirement pension.

Because data on municipal cash benefits ceased to be part of official statistics in Sweden in 2006, the most recent figures are from that year. The figures showed that (…) almost 1,900 received carers allowance. The number of persons receiving allowances is assumed to have decreased since then. It is important to stress that cash benefits play a very residual role in the Swedish LTC system, as services in kind are prioritised over cash benefits.” (https://eurocarers.org/country-profiles/sweden/)              (my emphasis)

8.    The 'respite effect' of paid employment for some carers

This is perhaps best understood by considering the various non-financial effects of being outside the paid labour force while caring, or of quitting work to care.

Identity: Some carers report feelings of stress, disappointment and loss at no longer having an ‘ordinary’ life like other people. They feel their caring role overshadows how they are seen by others, and that their identity as a separate individual with a sense of self has changed or disappeared (Stiell et al, 20062). This can be a particular problem for people in long-term caring roles such as carers of disabled children.

Self esteem: Linked to a sense of lost identity can be feelings of lowered self-esteem. Some carers report that, having quit work to care - and no longer having an earned income of their own - they feel they are held in lower regard than previously by others. Some say they no longer have the feelings of achievement and self-esteem they experienced when in paid work. This can be a particular problem for people who have given up skilled work or a job in which, due to their knowledge or experience, they had a positive reputation. Some carers feel they are seen as ‘just a carer’ in social situations, or that as a full-time carer they are socially ‘invisible’ (Herklots, 20183).

Respite: Some studies have found a ‘respite effect’ from (paid) work for carers. For example, a US study reported this specifically for ‘mothers of older children with special needs’ (Morris, 20124).

Participation and social inclusion: In a study of c2,000 carers of working age conducted for Carers UK in England, Wales and Scotland (The Carers, Employment and Services study, 2006-7), we found:

‘carers often feel it is important to maintain their other identities when they become carers, and worry about the way caring is impacting on their other family relationships, on their social and leisure activities (which has implications for their health and wellbeing), and on their ability to hold on to their job or career, and to the income, social contacts and mental stimulation which they get from paid work. There is scant evidence in the CES study that carers, even those who are the most committed to caring, want to ‘disappear’ into a ‘hidden world of caring’. Rather, many feel that work is an important psychological ‘lifeline’ for them, besides being crucial for their household finances and a way of getting a break from the physical demands of caring. Most importantly, data in this study confirms that for many carers, paid employment is part of their normal life – and something from which most, including both the men and the women in our study, did not want to be excluded.’ (Yeandle et al., 20075, pp25-26)

Quality of life: Kermode & McLean (2001) found that ‘caring for someone within the family was related to lower QOL’

2 Stiell, B., Shipton, L. and Yeandle, S. (2006) Caring for Sick or Disabled Children: parents’ experiences of combining work and care London: Carers UK.

2 Kermode, S. and MacLean, D 2001, 'A study of the relationship between quality of life, self-esteem and health', Australian Journal of Advanced Nursing, 19(2): 33-40.

3 Herklots, H. (2018) ‘Too many carers feel alone, invisible and unsupported’, The Guardian, 3 August 2018.

4 Morris, L. (2012) ‘Testing respite effect of work on stress among mothers of children with special needs’,

Journal of Family Economic Issues (2012) 33:24–40.

5 Yeandle, S., Bennett, C., Buckner, L., Fry, G. and Price, C. (2007) ‘Stages and Transitions in the Experience of Caring’, London: Carers UK.

9.    Calculating the financial value of the contribution made by unpaid carers

The £132bn figure mentioned in the first session of evidence on 25 April was calculated at the request of Carers UK in 2015 (Buckner and Yeandle, 2015). The methodology used involved various evidence based assumptions. Using 2011 Census data on individuals’ hours of caring (captured in 3 categories, see below), we assumed:

• of the 4.2m carers providing ‘1-19 hrs pw’, 31% provided 15hrs, 31% 7 hrs, 38% 2 hrs
• of the 0.9m carers providing ‘20-49 hrs pw’, each provided on average 35hrs of care pw
• of the 1.7m carers providing ‘50+ hrs pw’, all provided 50hrs pw

There are other methods that can be used; each has its advantages and disadvantages. We considered this the best method for our purposes; one advantage of it was that we could calculate the value of what carers contribute at low levels of geography, as we used figures derived from the Census.

Other researchers have employed time use data and have chosen other methods than the unit cost of an hour of homecare for their estimates. All figures produced on the economic value of unpaid care are necessarily estimates based on assumptions, about which not all analysts would agree.

Examples can be found in the following academic papers / reports:

F. Francavilla & G. C. Giannelli (2019) ‘Dressing a ghost: size and value of unpaid family care’, Applied Economics, 51:28, 3015-3030, DOI: 10.1080/00036846.2018.1564116 [Link to this article: https://doi.org/10.1080/00036846.2018.1564116]

Fraser of Allander Institute (2021) Learning disabilities and the value of unpaid care

F. Francavilla, G.C. Giannelli, G. Grotkowsk & M.W. Socha (2011) ‘Use of Time and Value of Unpaid Family Care Work: A Comparison between Italy and Poland’, Institute for the Study of Labor, IZA Paper 5771.

[The above is not a comprehensive list. I can explore additional sources for this if required.]

26 May 2022