Select Committee on Work and Pensions Fourth Report


1  Introduction

The Government's policy on carers

1.  The Carers (Recognition and Services) Act 1995, covering England, Scotland and Wales, defined a "carer" as someone providing "a substantial amount of care on a regular basis". The Act gave carers the right to request an assessment by their local authority of their own circumstances and needs arising from their care-giving role, but they were not entitled to specific services in their own right. The entitlement depended on the person receiving care having first had an assessment of his or her own needs.

2.  In 1999, the Government launched the National Strategy for Carers.[4] The Government's three strategic elements to help carers carry out their caring responsibilities were: information, support and care for carers. The Strategy stressed that enabling carers to combine paid work and care was a priority for Government. As part of the Strategy, the Government introduced the Carers Special Grant in England to fund new services allowing carers a break from caring. This was the first time that resources were provided specifically for carers' services. The Scottish Executive and the National Assembly for Wales developed separate National Strategies to help carers in their respective countries.

3.  The Carers and Disabled Children Act 2000, which covered England and Wales, strengthened carers' entitlement to assessment by granting carers for adults and people with parental responsibility for disabled children the right to be assessed irrespective of whether the care recipient was being assessed. Importantly, the Act allowed carers to receive services in their own right. It enabled local authorities to offer carers conventional services or, alternatively, Direct Payments to enable them to buy services they had been assessed as needing.

4.  In Scotland, the Community Care and Health (Scotland) Act 2002 recognised unpaid carers as key partners in the provision of care, and entitled them to an assessment in their own right. In addition, the Act placed a duty on local authorities to offer Direct Payments for certain services to all eligible disabled people, including those with mental illness and learning difficulties, and parents of disabled children.

5.  The Carers (Equal Opportunities) Act 2004 came into force in April 2005 in England and Wales. The Act was intended to give carers more opportunity to enjoy activities that many people take for granted by requiring assessments to include carers' wishes in relation to education, training, employment and leisure. Under the Act, councils are obliged to inform carers of their rights to an assessment, and also to promote better joint working with other public bodies (such as education, housing or health bodies) to ensure support for carers is delivered in a coherent manner.

6.  In 2007 the Government introduced its 'New Deal for Carers' in England and Wales.[5] The package of measures included a revision of the 1999 National Strategy for Carers, the provision of respite care cover in emergencies, the setting up of a national helpline and an 'expert carers programme' (now renamed 'Caring with Confidence'). In September 2007 the Prime Minister announced a new Standing Commission on Carers. The Commission's remit includes a key role in the implementation of the Government's new National Carers Strategy as well as a responsibility to advise the Government on matters it feels are relevant to carers in the longer term.

7.  On 10 June 2008, the Government published its new ten-year vision for carers, Carers at the Heart of 21st Century Families and Communities.[6] The Strategy is underpinned by £255 million to implement some immediate steps, alongside longer-term plans. A wide range of commitments are set out, including: the provision of information and advice; breaks provision for carers; a review of carers' benefits; improved support from the NHS; support to help carers better combine work and care. The new Strategy applies in full to England; commitments on income and employment apply UK-wide.

8.  Carers, like other groups of employees, can benefit from the 1999 Employment Relations Act which gave all employees the right to (unpaid) time off to deal with family emergencies. This measure allows carers, parents and others with dependants to take a 'reasonable' number of days off to deal with the immediate situation and to make any necessary longer term arrangements. The 2002 Employment Act gave employed carers of disabled children under the age of 18 the right to request flexible working arrangements such as changing start and finish times, compressed working hours, part-time working and working from home after six months in post. This right was extended to certain groups of carers for adults under the Work and Families Act 2006.[7] All three measures cover England, Scotland and Wales.

9.  In terms of UK equality law, carers are not a recognised group protected from discrimination. However, following the Opinion of the Advocate-General in January, the European Court of Justice confirmed on 17 July in the Sharon Coleman case that the UK's implementation of European disability discrimination protection is inadequate. Since she was not the one suffering from a disability, Ms Coleman, a carer for her disabled son, was unable to claim her employer's actions were discriminatory under the Disability Discrimination Act 1995 (the DDA). Eversheds Solicitors note that, in respect of other forms of discrimination, it is well established in UK case law that protection extends beyond the characteristics of the individual and includes, for example, discrimination by association.[8] Ms Coleman argued that the failure of the DDA to similarly recognise discrimination or harassment of a non-disabled person on the grounds of their association with someone with a disability provides much narrower protection in this area. It also, she contended, did not accord with the much wider wording and interpretation of the European Framework Directive, and, as a result, significant change to the way in which the courts have interpreted the DDA, or change to the wording of the legislation, was required. Either way, Eversheds believe that the ruling will have a significant impact upon working practices in the UK.[9]

The inquiry

10.  In our call for evidence we stated that we had decided to undertake an inquiry into the effectiveness of the Department for Work and Pensions' existing approach to carers. In particular:

11.  The Committee invited witnesses to submit written evidence by 3 April 2008. Thirty-one memoranda were received from a wide range of individuals and organisations.

12.  The Committee took oral evidence from Ms Imelda Redmond, Chief Executive, Carers UK; Ms Amanda Batten, Head of Policy and Parliamentary Affairs, the National Autistic Society; Mr Stephen Burke, Chief Executive, Counsel and Care; Ms Vicky Pearlman, Social Policy Officer (Disability and Older People's Benefits and the Social Fund), Citizens Advice Bureau; Mr Gary Vaux, Head of Advice (Benefits and Work), Money Advice Unit, Hertfordshire County Council, Joint Representative for ADASS and LGA; Ms Philippa Russell, Chair, Standing Commission on Carers; Ms Sally West, Policy Manager, Income, Consumer and Housing Team, Age Concern; Ms Christina Barnes, Policy Head, Economics and Social Inclusion, Equality and Human Rights Commission; Ms Nicola Brewer, Chief Executive, Equality and Human Rights Commission; Ms Ruth George, Political Officer, USDAW; Ms Caroline Waters, Director, People and Policy, BT Group; Mrs Anne McGuire MP, Parliamentary Under Secretary of State (Minister for Disabled People); and Mr Ivan Lewis, MP, Parliamentary Under Secretary of State for Carers.

13.  As part of the inquiry, the Committee also undertook a visit to Australia and visited the Carers' Resource Centre in Harrogate. Reports on each visit are contained in Annex A to this Report. We are extremely grateful to the British High Commission in Canberra for arranging our visit to Australia, and for all the assistance that they provided while we were there. We are also very grateful to Anne Smyth, Director of the Harrogate Carers' Resource Centre for facilitating our visit, and to all those who took time to meet us.

14.  We would also like to thank Sue Yeandle, Professor of Sociology and co-Director of the Centre for International Research on Care Labour and Equalities, University of Leeds, and Dr Hilary Arksey, Senior Research Fellow at the Social Policy Research Unit, University of York, for assisting us as Specialist Advisors during the inquiry. We very much appreciate the contribution they made to our work.

Carers in Britain: who are they?

CARERS - DEFINITION

15.  The 2001 Census defined as carers all those who responded positively to the question: "Do you look after or give any help or support to family members, friends or neighbours or others because of: long-term physical or mental ill-health or disability or problems related to old age?". Almost 6 million people in the UK identified themselves in this way and reported their regular weekly hours of caring. Of the carers counted in the UK's 2001 Census:[10]

  • 1,247,291 people provided 50 or more hours of care per week - the value of their contribution has been estimated at £47.02 billion per year;[11]
  • 659,069 people provided 20-49 hours of care per week - the total value of their care is estimated at £17.39 billion per year;[12] and
  • 3,952,572 people provided 1-19 hours care per week - the total value of their care is estimated at £22.59 billion per year.[13]

16.  It is nevertheless accepted that many people - including some with intensive caring roles - do not think of themselves as 'carers', seeing the caring they provide as simply a normal part of their family and personal relationships or of their roles as neighbours or friends. This is excellent for the strength of family and community roles and relationships but creates some challenges for policy development and implementation, as it can be hard to identify and support those who do not recognise themselves as carers who might be eligible for support. Nevertheless the concept of 'a carer' has been vital for policy development in this area, which owes much to an active carers' movement and to the advocacy of voluntary organisations.[14] Carers often face health, financial and social penalties as a result of the care they give - a situation which the Government's National Strategies for Carers (in 1999 and 2008) have identified as unacceptable, particularly in view of the vital contribution carers make to society.

CARERS BY AGE

17.  Carers are found amongst men and women of all ages (see Figures 1 and 2), with the peak age for caring among both men and women of 45-69 years. In the 50-59 age group large minorities of people - 17% of all men and 24% of all women - are carers.

18.  As shown in Figures 1 and 2, the 2001 Census also identified a small but significant number of young carers, aged under 18.[15] In 2001 over 165,000 young people aged 18 and under in Great Britain were carers.[16] Most of these young carers (80%) were in the 12-18 years age group and most of them (85%) were providing between 1 and 19 hours of care per week. However a minority were caring for many more hours than this each week (over 11,000 caring for 50 or more hours each week), and over 3,000 were young people who were not in good health themselves.

19.  It is important to note that caring is often a transitional status, with many people entering and exiting caring roles each year. This means that the total number of people who experience caring during this (and other) stages of their lives is in fact very much larger than the 'snapshot' figures recorded in the Census. Carers UK report that 3 out of 5 people will be carers at some point in their lives. Half of these carers will be caring for more than five years.[17] By age 75 years, almost two thirds of women and close to half of men will have provided one or more spells of at least 20 hours of care per week.[18]

Figure 1: Carers (of both sexes) by age: Great Britain



Source: 2001 Census, Standard Tables,

Figure 2: Carers by age and sex, UK



Source: 2001 Census, Standard Tables,

20.  In their early 60s, women are more likely than men to provide unpaid care; one in five women aged 60- 64, and about 1 in 6 men of this age, are carers. In the age groups over age 75, however, men are more likely than women to be carers: there are 179,000 men and 169,000 women providing unpaid care in this age group. After age 70 men are considerably more likely than women to have a caring role. Between ages 75 and 89 years around 10% of men are carers, and even at age 90+ the figure for men is over 6% (Figure 3).

21.  Research shows that when men become carers, most often they are caring for a wife or partner, usually someone living in the same household. Women are more likely than men to be caring for a son or daughter who has a long-term condition or disability (again often living in the same household, quite often as single parents), and they are also more likely than men to care for an elderly parent, frequently taking on substantial caring responsibilities even when they do not share the same household.

22.  Many carers live with or near to the person they care for, although some provide caring 'at a distance', sometimes travelling long distances at weekends, often to care for an elderly parent, or for someone close to them who lives alone.


Figure 3: Older people who provide unpaid care, by age and sex, UK



Source: Buckner, L. and Yeandle, S. (2005) Older Carers in the UK, data derived from 2001 Census Standard tables, supplied by ONS, GRO Scotland and NISRA. Note: Numbers of carers are shown within the bars.

CARERS BY EMPLOYMENT STATUS

23.  In 2001 the Census showed that there were 4.27m carers of working age living in Great Britain (Figure 4). Among those who were men, 66% were in full-time paid work (including 12% who were self-employed), while a further 7% had part-time jobs (Figure 5). Among women who were carers, 32% were in full-time work (including 3% who were self-employed) and another 30% were in part-time employment (Figure 6).

24.  In 2001, over a quarter of a million men and over 300,000 women combined their paid jobs with providing 20 or more hours of unpaid care each week. As many as 287,000 people held a paid job alongside an unpaid caring role which occupied an extra 50 or more hours each week. This latter group was fairly equally divided between men (46%) and women (54%). Most men in this group (89%) and almost half of the women (43%) were working full-time hours in their paid job, revealing that (numerically) in 2001 there were in fact more men than women coping with full-time employment at the same time as caring for 50+ hours per week.


Figure 4: Carers of working age by sex, Great Britain
2001 Census Women

number

Men

number

Women

%

Men

%

All

%

All Carers2,419,957 1,845,75457 43100
Caring 1-19 hrs 1,680,5281,359,269 5545 100
Caring 20-49 hrs 285,523192,896 6040 100
Caring 50+ hrs 453,906293,589 6139 100

Source: 2001 Census Standard Tables,


Figure 5: Male carers of working age by economic activity status, Great Britain





Figure 6: Female carers of working age by economic activity status, Great Britain



Source for Figures 4 and 5: Yeandle, S. and Buckner, L. (2007) Carers, Employment and Services: time for a new social contract? London: Carers UK; derived from 2001 SARs. The 2001 SARs are provided through the Cathie Marsh Centre for Census and Survey Research (University of Manchester), with the support of the ESRC and JISC.

25.  It is possible for many people to combine work and care and it is critically important to provide adequate support for those who do so. In a recent study, 40% of over 500 carers who were caring full-time said they would rather be in paid work but needed better support and services to achieve this.[19] The 2001 Census showed that there were well over half a million carers in this situation (over 260,000 of them providing 50 or more hours of care each week, and about 85% of them women) and it can be assumed that many carers would welcome additional help to re-enter employment, with all the benefits this could bring to their financial and social circumstances.

26.  There is a strong relationship between hours of caring per week and length of time caring and poverty, and analysis of the 2001 Census also shows that those who care for 20 or more hours per week are very much more likely to live in workless households than non-carers or those caring for less than 20 hours per week.[20]

27.  In relation to education and training, the 2001 Census shows the negative impact of caring on younger (aged 16-24) carers' likelihood of continuing in full-time education, and (for carers of working age in the older age groups) a strong negative relationship between caring and full-time employment (see Annex B in this report). More detailed information about the circumstances of Britain's working age carers is shown in chapter 5 and in Appendix B to this report.

DIVERSITY AMONG CARERS

28.  Some ethnic groups have higher rates of caring than others (see Annex B to this report). This in part reflects the greater demand for care which many people in these groups encounter, with Pakistani and Bangladeshi residents of working age twice as likely to live with someone with a limiting long-term illness (LLTI) as White British residents. Carers in some ethnic minority groups also experience higher rates of poor health themselves.

29.  Carers for sick or disabled children are another group particularly in need of support. In England and Wales in 2001, 212,000 households included a child under 16 who had a LLTI and an adult who saw him or herself as a carer. With more than one 'parent carer' in some cases, these households contained a total of 305,000 carers, 64% of them women (a quarter of these were lone parents), and 20% were people who themselves had a LLTI. Most (69%) were providing at least 20 hours of unpaid care per week. Parents of sick or disabled children are more likely than other parents to be in poor health and mothers especially are considerably less likely to be in employment than other parents.[21]

Key public policy issues

30.  Sustaining the ability of carers to provide the care and support they give to others is of critical importance for Government, employers and service providers. The unpaid support they give saves the public purse an estimated £87bn each year. [22] Caring also matters deeply to families and individuals. We have taken extensive evidence about carers and the care they give, and have been convinced of the importance of finding better ways of supporting carers. For most carers, caring and supporting their loved ones is something they wish to do not in isolation and poverty, risking their own health, but as part of active, socially engaged lives which enable them to continue to earn a living even when caring is required of them.

DEMOGRAPHIC CHANGE

31.  All parts of the UK will see significant increases in the demand for care in the first half of the 21st century. The main causes of this development are the increased longevity of the population, and greater survival rates, arising from improvements in healthcare, among children and younger adults who are sick or disabled (or who suffer injuries or accidents). Old age is associated with increasing health and care needs; dementia cases alone are expected to increase from 0.7 million in 2007 to 1.7 million by 2051.[23] The trend towards assisting more sick and disabled people to live or recover at home - which is what most of them wish to do - also significantly increases the demand for care by family members.

32.  The need for more people to provide unpaid care - something most people wish to do when someone close to them needs their support - and the fact that many carers suffer disadvantage and feel unsupported in carrying out their caring roles presents a number of challenges. The first is that the changing age structure of the population places dual pressures on the working age population, since the economy and employers need to sustain an adequate labour supply at a time when more people are retiring than are entering the labour force, yet the increased demand for care impacts most on people of working age. This means that growing numbers of people are trying to combine care with paid work. The second challenge is that, unless people can access the support and services they need, caring will cause the early exit of many older workers from the labour force, reducing pension saving and depriving organisations of experienced workers in whom they have made significant human capital investments.

RECOGNISING AND RESPONDING TO CARERS

33.  Many carers do not readily identify themselves as such. It can be hard for carers to secure the support they need if they do not think of themselves as being in a caring role. It is stressful and frustrating for carers coping with demanding and difficult responsibilities, sometimes under considerable emotional strain, if those around them - employers, professionals in the health and social care system, and providers of services (in housing, transport, leisure and education) - do not fully understand the pressures they are under, or offer them appropriate support.

DIVERSITY OF CIRCUMSTANCES

34.  Evidence commissioned by Carers UK has highlighted that carers are in a variety of different relationships to those they care for (such as child, partner, parent, sibling, friend) and support people with a range of very different needs (long-term conditions, mental health difficulties, learning difficulties, physical disabilities and impairments, terminal illness, frailty in extreme old age, problems related to alcohol or substance abuse, dementia, serious illness or major operations).[24] Further diversity in carers' circumstances arises because of the particular needs of carers in some ethnic minority populations, from difference in family circumstances and structures, and because of where carers, and those they care for, live. Particular challenges are faced by those who reside with the person they care for (who may need special support to get a break from their caring role) and those who live some distance from the person they care for (for whom transport costs and time pressures may be especially difficult). In large conurbations, carers face challenges in paying for parking or travelling at busy times; in rural areas, much time and expense may need to be allocated to travelling to hospital and doctor's appointments, or to day care services. Since services, eligibility criteria and information systems can vary so much from place to place, carers living in a different place from the cared for person can often find it extremely difficult to understand and access available systems of support.

TACKLING THE SOCIAL EXCLUSION CARERS FACE

35.  Carers face three main types of penalty as a consequence of the care they give: financial strain; damage to their own health; and social isolation. The financial pressures on carers arise both from the additional costs of caring (discussed in chapter 3 of this report) and from giving up paid work, reducing working hours, or moving into lower paid work. Carers' health can be affected by the physical demands of their caring role, by lack of rest and sleep, and by mental and emotional stress (sometimes exacerbated by their frustrations in trying to access support). The social isolation some carers experience arises from giving up work, from difficulty in sustaining leisure and other activities if the person cared for cannot be left alone, or if the caring role is particularly exhausting or intense.

OPPORTUNITY PENALTIES: CONFIDENCE, SKILLS AND EMPLOYMENT

36.  In addition to health and financial difficulties and social isolation, carers who have had to give up work to care (often reluctantly but feeling they have no choice but to do so) often suffer 'opportunity penalties', as through caring and being outside the labour market their vocational skills may become rusty or out of date, and over time they may lose confidence and feel out of touch with the world of work. When caring ends, perhaps when the person cared for dies or enters residential care, carers who have spent a long time in demanding caring roles need sensitive, tailored support to re-enter employment, supported by advisers who understand their circumstances and particular needs.

37.  The two main sources of additional 'demand' for caring - the increased longevity of older people and greater survival rates among sick and disabled people - will almost certainly increase the numbers of carers needed in the future. Caring already occupies the time and energy of some 10% of the population, and this will certainly increase in coming decades. Particularly large increases can be expected among people aged 45-69, the very ages at which, both to sustain the pensions system and to maintain the economic efficiency and performance of organisations and businesses, it is Government (and EU) policy, to raise employment rates. It is in this context that we have recognised the crucial importance of achieving the following objectives through a more strategic DWP approach to supporting carers which aims to:

DWP'S APPROACH TO CARERS

38.  Whilst health and social care issues clearly have a huge impact on carers, those related to benefits, employment and equalities are of equal importance. Currently, the strategic lead for carers rests with the Department of Health, and the Parliamentary Under Secretary of State for Care Services, Ivan Lewis MP, was recently given the title Minister for Carers.

39.  Ms Redmond of Carers UK pointed out that, "Actually, only a tiny minority of carers go near Social Services. Of the 6 million [carers], last year there were about half a million assessments of carers by Social Services […]. The work we have been doing over recent years is really to […] look at a much more holistic support package which is about employment, equality and about the benefit system working for carers rather than against them."[25]

40.  She added that "Carers UK's evidence over the years has shown that if we do not get all the different parts of society that impact on carers' lives sorted out in the right way, the negative impact of caring really stacks up and people fall out of work and become ill."[26]

41.  We call on DWP to take a stronger and more proactive lead in Government policy on carers. As well as identifying and implementing specific policies to improve the lives of carers, DWP needs to take specific account of carers in all its work, including its role in reducing child poverty and pensioner poverty, its efforts to see 80% of working age people in employment, and its vision of giving people equality of opportunity.



4   Department of Health, Caring about Carers: A National Strategy for Carers, 1999. Back

5   Department of Health, Our Health, Our Care, Our Say: A New Direction for Community Services, 2006. Back

6   HM Government, Carers at the Heart of 21st-Century Families and Communities: A Caring System on Your Side. A Life of Your Own, 2008. Back

7   A carer was defined by the Department of Trade and Industry as:

"… an employee who is, or expects to be, caring for an adult who is married to, or the partner or civil partner of the employee or is a near relative of the employee (a near relative includes parents, parent-in-law, adult child, siblings, uncles, aunts or grandparents and step-relatives); or falls into neither of those categories, but lives at the same address as the employee". Back

8   Eversheds HR e-briefing no 371: The ECJ confirms the Disability Discrimination Act needs to change Back

9   Eversheds HR e-briefing no 371: The ECJ confirms the Disability Discrimination Act needs to change Back

10   2001 Census Standard Tables, Crown Copyright 2003: ONS, GRO(Scotland) and NISRA. Back

11   This assumes that each only provides 50 hrs of care p.w., and takes the replacement cost of care as £14.50 per hour (the unit costs figure for one hour of social care support published by the NHS Information Centre (PSS EX1 Return for 2005-2006 Draft 3)). Back

12   If we assume this group of carers were carrying out, on average, 35 hours of care each week. Back

13   This assumes that 31% of this group were caring for 15hrs p. w., 31% for 7hrs p. w., and 38% for 2hrs p.w. Back

14   Most agencies now discourage the use of the term 'carer' to describe paid workers who provide care as part of their professional role. In this report, the term is used exclusively to refer to those who provide unpaid care and support to a relative, partner, friend or neighbour who needs help because of illness, disability or frailty associated with old age. Back

15   In England, just over 139,000 young carers aged under 18 were identified. Back

16   Analysis (2008) by Dr Lisa Buckner, University of Leeds of 2001 Census Theme Tables on Dependent Children. Back

17   Carers UK Key Facts about Carers and Pensions 16.07.2008 http://www.carersuk.org/Policyandpractice/PensionsAct/Carerpensionsfactfile Back

18   M Hirst, Informal Care Over Time, Social Policy Research Unit, University of York, 2001. Back

19   S Yeandle et al, Managing Caring and Employment, part of the Carers, Employment and Services Report Series, London: Carers UK, 2007. Back

20   S Yeandle et al, Diversity in Caring: towards equality for carers, Carers Employment and Services Report Series, Carers UK, 2007. Back

21   L Buckner and S Yeandle, Managing more than most: a statistical analysis of families with disabled children, Carers UK, 2006. Back

22   L Buckner and S Yeandle, Valuing Carers: calculating the cost of unpaid care, Carers UK, 2007. Back

23   Dementia UK: a report into the prevalence and cost of dementia prepared by the Personal Social Services and Research Unit at the London School of Economics and the Institute of Psychiatry at Kings College London for the Alzheimer's Society, 2007. Back

24   S Yeandle et al, Equality and Diversity: Understanding Carers, Carers UK, 2007. Back

25   Q 2 Back

26   Q 2 Back


 
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