Memorandum submitted by Carers UK


1. About Carers UK


1.1. Carers UK is the leading organisation representing the views and interests of the six million carers in the UK who care for their frail, disabled or ill family member, friend or partner. Carers give so much to society yet as a consequence of caring, they experience ill health, poverty and discrimination. Carers UK seeks to end this injustice and will continue to campaign until the true value of carers' contribution to society is recognised and carers receive the practical, financial and emotional support they need.


1.2. Carers UK is an organisation of carers, for carers, with a reach of around 1,500 organisations, including many run by carers, who are in touch with around 950,000 carers between them. Including Carers Week our reach extends to around 4,000 groups and 2.5 million carers.


1.3. Carers UK runs an information and advice service and we answer around 16,000 queries from carers and professionals every year. We also provide training to over 2,600 professionals each year. Our website is viewed by nearly 300,000 unique visitors and nearly 1000 carers are members of our website forum.


1.4. Carers UK has offices in Wales, Scotland and Northern Ireland and we also run a specific project in London. This response reflects the views of the organisation, UK-wide.


2. Introduction and summary


2.1 Carers UK believes that this Inquiry has the potential to build on and complement the Committee's earlier groundbreaking report on carers, Valuing and Supporting Carers. We firmly believe that our proposals will increase carers' life chances and equality, as well as delivering benefits to business, local communities, families and to society as a whole.


2.2 As this response sets out below, we believe that carers are discriminated against and that this is one of the major reasons why they have such unequal outcomes across a range of indicators. These include their health, access to employment, income and social inclusion.


2.3 We believe the DWP should take a more strategic approach to improving opportunities for carers, particularly in employment. In its interaction with carers through the benefits system and return to work support, its engagement with employers and through its influence across government in other key areas such as social care, the Department could support considerable improvements in policy development and implementation.


2.4 However even with policy improvements in these areas, we believe there is a very strong case for extending legal protection to carers against discrimination in the three key areas of:

a single public sector equality duty

discrimination in employment

discrimination in the provision of goods, facilities and services


2.5 We believe that serious consideration should be given to all these three areas because:


Each measure would be less effective without the others. The public sector duty needs to be implemented along with anti-discrimination protection to ensure that it is underpinned and discrimination law would also be less effective without the driving force of the duty to effect culture change and a positive promotion of equality.

This would provide the most practical and effective way of tackling discrimination while also providing the most clarity for carers, employers and service providers alike.

Anti discrimination policy for carers has been tried and tested by the best employers and service providers and is in many ways a less onerous and challenging area of discrimination to implement than some of the other diversity strands. It should not be a difficult issue to address in practice and it would have tangible and long lasting benefits.

This recognises the existence of multiple discrimination. Many carers face discrimination on a number of grounds and cannot be easily pigeon-holed into any one category; a new protection for carers would be helpful in linking multiple forms of discrimination and incentivising good practice.

This would recognise the realities of people's lives - most of us will experience caring at some point in our lives. It is at such times of our lives - when we are in most need of accessing flexible employment and services - that the issue of protection against discrimination is at its most relevant.

3. Carers and the Single Equality Act


3.1 Carers UK welcomes the Single Equality Act as we believe it will be simpler for those relying on the protection it offers, and for employers and services providers. We believe it offers the opportunity not just to consolidate existing legislation, but to review the progress made over the last 30 years and ensure that the law reflects the issues we face in the 21st century.


3.2 The position of carers does interact considerably with existing equality strands and it has been an issue that has been recognised by the Equality and Human Rights Commission (EHRC) as a key priority for its work.


Disability - Carers are two to three times more likely to have a life limiting illness if they are providing substantial care compared with those who are not carers. (Source: Census 2001). The recent ruling in the Coleman v Attridge Law case also confirmed that disability discrimination legislation is intended to cover those 'associated with disability' i.e. those who are caring for a disabled person.

Age - The peak age for caring is between 45 and 54 when one in four people is a carer (Census 2001) and, because of the age profile, if a carer gives up work to care, they are more likely to find it harder to return to work.

Race - Bangledeshi and Pakistani men and women are three times more likely to provide care compared with their white British counterparts (Source: Who Cares Wins, Statistical analysis of the Census 2001).

Gender - women have a 50:50 chance of providing care by the time they are 59 compared with men by the time they are 75 years old and women are more likely to give up work in order to care (Source: It Could be You, Carers UK 2000).

Sexual Orientation - people who care and who are in a lesbian or gay relationship face additional barriers in accessing the sorts of services that they need and face different prejudice.

Religion or Belief - the way that services are supplied to a family may not be religiously appropriate.


3.3 These considerations have led to some people suggesting that caring is a cross-cutting issue, and should not be a strand protected in legislation in its own right. We believe this approach would not recognise the reason why a carer is discriminated against, and would not give them the protection they should be entitled to in their own right. Existing legislation in these areas has not been effective in protecting carers from discrimination to date: the new Single Equality Bill provides an opportunity for a new approach.


3.4 It has also been suggested that carers are likely to be covered through indirect discrimination, particularly on the grounds of gender or age. However this is a difficult vehicle to use as it involves complex stages for proving the definition, is untested in law and does not provide clarity for employers or employees. Relying on this form of protection would also lead to further inequalities as, e.g., indirect sex discrimination would not protect men who are carers and indirect age discrimination would not protect younger carers who are often most at risk of social exclusion. There is still a lack of understanding about who carers are and considerable stereotyping of them as a group. The reality is that caring is something that can and probably will affect most of us, and at that time we will all want recognition, support and equal access to employment and services.


4. The evidence of discrimination against carers


4.1 Carers are a hidden but very substantial part of our population, constituting around 6 million people in the UK, i.e. 10% of the total population and approximately 12% of the adult population. This number is also set to rise considerably, with an estimated additional 3 million carers required by 2037 (Source: It could be you: a report on the chances of becoming a carer, Carers UK, 2001).


4.2 However, carers remain one of the few groups against whom it is possible to discriminate; they themselves feel very strongly about this as can be witnessed by the calls that we receive on a daily basis to our helpline CarersLine. These include instances of discrimination from employers, discrimination when applying for jobs and discrimination in terms of access to services, goods and facilities. Examples of these include:


4.3 Lack of access to work - One in five carers gives up work to care; this can lead to loss of income, pension and long-term financial security and is a loss to the carer and to the employer alike. (Source: EOC and Real Change Not Short Change, Carers UK). Carers have also been refused jobs on the basis of their caring responsibilities; for example, in a job interview a local authority employer told the interviewee to reapply for similar positions once his wife with MS had died. Comments which used to be asked regularly of women about their childcare responsibilities, and suggestions that they might not be completely committed to their work, are now targeted at carers.


4.4 Lack of ability to return to work - Some carers can and do return to work but many are unable to do so because of a loss of skills, confidence and networks. The benefit system also disincentives people to work as Carer's Allowance has a cliff-edge.


4.5 Lack of access to training at work - Carers frequently report problems in accessing training courses provided by their employers, for example, if these are held at weekends or during the evenings and no alternative care is provided. Even where employers take child care requirements into consideration they often overlook carers of adults; for example CarersLine took on a case where an employer had paid alternative care costs to enable an employee with a child to attend training but was not prepared to do so for an employee caring for a disabled adult.


4.6 Lack of flexibility and understanding at work - carers face problems especially when alternative care services are unavailable or inflexible. Many have to use their paid annual leave to cover their care needs meaning they do not get a break themselves. Although some succeed in reducing their hours or changing their working patterns, many feel forced to look for a different type of work or to change their jobs. At work some have also met with ignorance, disrespect or hostility because of their need to work flexibly. As an example, a day centre in Halton was closed without properly consulting or considering carers' views; the resulting plans forced many parents to give up work in order to care for their adult sons and daughters because the more "flexible" packages of care assumed they would provide the care in between.


4.7 Harassment and negative attitudes at work - carers often experience this from managers or colleagues. Comments such as the following from a carer employed in social services are typical experiences:


"There was a time when my son was poorly and when I came into work, the first thing they said was, "Ooh, you've had time off again have you? You've been on holiday again, have you?" These sorts of digs. She must have known why I was off, that my son was really sick, poorly. Even when I told her, she carried on with these comments and digs. Never once said, "Oh I'm sorry, how is he? Is he OK?" Ironic when you think they are educational social workers supporting families where children have special needs.


4.8 Lack of access to alternative care and support services - this problem is repeatedly reported by carers of all ages. A major research study of working carers found that only a quarter of them felt they had adequate support from formal services to enable them to combine work and care. Furthermore between 40 and 50 per cent of working carers say that a lack of flexibility and sensitivity in the delivery of services is hampering them. The majority of working carers say they need at least one type of formal service which they are not currently receiving. (Source: Carers, Services and Employment Report Series, Carers UK, 2007). Working carers of sick or disabled children also face a particular challenge in that much childcare provision, including after school and school holiday care, is not accessible to disabled children. In addition, access to respite care and sitting services is often limited and few carers have the support of formal alternative care services or any contact with their local social services department. (Source: Caring for Sick or Disabled Children, Centre for Social Inclusion, Sheffield Hallam University, 2006). Comments such as the following are typical experiences faced by such carers:

At first it was okay, but now, as time goes on, (father's) more dependent, and the longer you do it, the more it seems to wear you down, so the more you feel that you need a break from it. It would allow me to be better mentally prepared to do the (training) course and look after Dad - not just trudging from one task to the next task, and not any break in between, and it just grinding you down".


"I could probably find computer-based work to do at home, but since I am unable to leave the house without first finding someone to look after my father, and there is no mechanism for registering people such as me with the job centres, realistically I'm not going to find anything like that."


4.9 Lack of access to education and qualifications - Working carers are more likely to be unqualified, and less likely to hold university degrees, than other people in employment. Among women in full-time paid work, those who provide unpaid care for 50 hours or more per week are twice as likely as non-carers to be unqualified. (Source: Who Cares Wins, A report for Carers UK by the Centre for Social Inclusion, Sheffield Hallam University, 2006)


4.10 Lack of access to higher level jobs - Related to the above point, working carers of both sexes are much less likely to be in higher level jobs. Almost 45% of men and 55% of women who are in paid work and caring for 20 or more hours a week are in elementary occupations, "process plant and machine operative jobs" or in sales, customer services or personal services. (Source: More than a Job: Working Carers: Evidence from the 2001 Census). Other evidence shows that almost half of those working part-time say that they are only in work of this type because of their caring responsibilities (Source: Carers, Services and Employment Report Series, Carers UK, 2007).


4.11 Lack of flexibility and understanding from service providers - this is a widespread problem reported by carers. For example, in one case both health and social services assumed that a woman with a broken leg would be able to rest it despite the fact that her husband was in the terminal stages of cancer and required 24 hour care from her. They eventually provided her with support too late, leaving her with lasting complications and constant pain from her broken leg as it was not able to heal properly. Many carers report the constant battle with service providers in order to get support and having to be at breaking point before they receive any response, for example, the following experience is typical:


"I'd just got to breaking point, and I'd phoned (social services), and phoned them, and asked: 'Can you just take him out, can someone take him for a couple of hours?' - No. So I got to breaking point and I phoned them and I said to them, 'You have two hours ... to come up with some sort of thing to help me', I said, 'I'm bringing him down to your office', and I said 'I'm leaving him there because I cannot cope with him any more with no help'. Then, funnily enough, within three hours later, I had the pack in the post, saying you have this many hours".


5. Equality in Employment


5.1 As have been shown above, carers currently do not have equal access to employment. Many carers fall out of work when their caring responsibilities start or after a number of years of trying to juggle their multiple responsibilities. There are a number of factors which prevent carers from working, many of which could be prevented by effective measures to tackle discrimination.


5.2 Discrimination against carers can take many forms. It can be (sometimes unspoken) cultural discrimination which prevents carers from applying for jobs, or from revealing their caring responsibilities during an interview. Caring is not well understood or recognised, and many carers are afraid to mention that they are a carer. This is something that DWP and its agencies could address in its role as a large employer. It should encourage carers to identify themselves and in particular encourage managers to be open about their caring responsibilities.


5.3 However discrimination can also be targeted action against an individual carer. In these cases, knowing that they have the support of the law would make carers more confident in asserting their rights to request flexible working or to complain about unequal treatment, harassment or bullying.


5.4 The recent Coleman v Attridge Law case has considerable implications and in effect means that carers cannot be discriminated against in employment. We believe that the Government must use the Equality Bill to clarify the implications of the Coleman case and provide a clear steer for carers and employers: it must form an integral part of the Equality Bill. This must also be reflected in guidance which should be published as soon as possible.


5.5 Before the Coleman case, Government had resisted the suggestion of including carers in discrimination and instead had pointed to other legislation such as the Carers (Equal Opportunities) Act 2004 and the Work and Families Act 2006 which introduced the right to request flexible working. We do not believe these pieces of legislation and those which preceded them, provide the protection that carers need. The Carers (Equal Opportunities) Act 2004 only places a requirement on local authorities to take a carer's wish to work into account when they carry out a carer's assessment. Evidence suggests that this is not being well implemented and local authorities are not being creative in supporting carers to work. And while the right to request flexible working under the Work and Families Act is very helpful, this type of flexibility cannot cover the whole range of problems outlined above as:


Carers' needs can be very different to those of parents since adult care packages (and those for disabled children) are more complex than childcare and there is also often more uncertainty about how their caring role will change in the future.

The type of harassment and negative attitudes that carers report - which can force people out of work as much as inflexible working practices do - have less to do with flexibility than with the more fundamental issue of discrimination.


5.6 Carers UK believes that the legal position of carers should be made clear to both employers and employees by extending protection from discrimination to carers. We propose that there should be a new prohibited ground of discrimination against carers following the format of the Disability Discrimination Act as this is the most appropriate to the position of carers.


5.7 DWP also has a role to play in improving its service to carers who access Jobcentre Plus services. Our experience of Jobcentre Plus to date is that advisers do not understand carers' needs and do not have much to offer them to support them to return to work. Whilst we welcome the Government's commitment to introduce Care Partnership Managers and to improve training for advisers, we have yet to see progress on the implementation of these policies. We still hear regularly from carers who have not been supported adequately by JCP to find a job, or to remain in work if they are at risk of having to give up their job.


5.8 In addition it is essential that DWP has a stronger voice in the debate about the future of care and support since the existing failings in the social care system restrict carers' opportunities. Whilst Government does recognise that improvement is needed in care services, this agenda should be explicitly linked to employment. Links must also be made at a local level so that advisers are able to help carers find social care services in the same way they do with parents who need support to access childcare.


6 Equality in Goods, Facilities and Services


6.1 Carers also report discrimination in accessing goods and services in many areas including lack of access to: alternative care services, education and training, childcare services, medical services, transport, quality housing, leisure facilities and affordable legal advice and services. Many of these services have a significant impact on carers' ability to work, and to participate fully in the community. Specific examples areas where legislation could improve access to goods, facilities and services include:


6.2 Lack of access to medical services - again, this problem is repeatedly reported by carers of all ages. For example, the need to take time off work for hospital appointments was cited as a barrier to combining work and care by 30% of carers surveyed by Contact a Family on behalf of DTI in 2004-2005. (Source: Caring for Sick or Disabled Children, Centre for Social Inclusion, Sheffield Hallam University, 2006). Carers of sick or disabled children face a particular challenge in that the organisation of such services for their children can adversely affect their ability to fulfil work obligations as appointments are often at fixed, inflexible times during office hours.


6.3 Lack of access to transport services - surveys of carers of sick or disabled children have shown that inflexible or unreliable transport services (i.e. because of late running, strikes, cancellations or diversions without notice) have caused frequent care emergencies which have been particularly problematic for working carers. Despite the expense involved, nearly all working carers surveyed had to have a private car in order to ensure that they could access the support services they needed and get to their workplace. However, 23% of families in England and Wales with a sick or disabled child have no access to a car or van. (Source: Managing More than Most: A Statistical analysis of families with sick or disabled children, Carers UK/University of Leeds). For carers without a car, relying on public transport or on taxis (which are relatively costly) restricted their lives and work opportunities even further. (Source: Caring for Sick or Disabled Children, Centre for Social Inclusion, Sheffield Hallam University, 2006). Another issue reported by carers is the problem of lack of availability - or high cost - of hospital parking spaces when they are attending for appointments.


6.4 Lack of access to quality and affordable housing - 16% of families in England and Wales with a sick or disabled child are living in overcrowded accommodation compared with 10% of other households. 34% of these families are also living in social housing compared with 21% of other households. (Source: Managing More than Most: A Statistical analysis of families with sick or disabled children, Carers UK/University of Leeds)


6.5 Lack of access to leisure facilities - it is often forgotten that if the cared-for person cannot access the facilities (for example, because of a disability), nor can the carer who is accompanying them. Here it could be argued that the introduction of protection against "discrimination by association" (already mentioned in this paper), would cover this. However, as in the area of employment, this would not cover a carer who is caring for a non-disabled person or who is trying to access the facility without the person they are caring for being present but is unable to do so because of inflexible opening times or other barriers.


6.6 Lack of access to legal services and advice. On the service side, at present claimants must use county courts in England and Wales or Sheriff courts in Scotland (as opposed to tribunals as in employment cases). Such courts are a relatively complex and expensive process and are off-putting. Cases are therefore not being pursued, not because this type of discrimination does not exist, but because of the complexity and the costs involved. Most of the carers we are in contact with have enough to cope with; they are put off by the huge stress and pressure, plus the cost, of taking legal cases. This, in itself, denies carers the access to the justice they deserve.


6.7 As in the case of employment, we do not believe that current protection is adequate as:

Taking the indirect discrimination route is highly complex and untested in law.

Evidence suggests that the Human Rights Act 1998, which should ensure that public bodies take account of individuals' rights when providing services, is not providing adequate protection in practice. Indeed, Carers UK believes there are several articles of the Act where carers' rights may be being violated including: a right to life; a right to be free from inhuman or degrading treatment; and a right to respect for private and family life. In addition, the Act only covers public bodies so does not protect people working in, or receiving goods and services from, the private and not for profit sectors. The DWP should investigate whether carers' human rights are being violated through its policies.


6.8 Despite reports of widespread discrimination in this area, there is currently no recognition in law that the reason carers are facing problems in accessing some kinds of services is because of their caring responsibilities. We therefore believe that the legal position of carers should be made clear to both service providers and recipients by means of an extension of protection from discrimination to carers. As in the Disability Discrimination Act, we believe that there should be a duty to make "reasonable adjustments" in relation to the carer. We also believe that there should be a specific prohibition against harassment in relation to goods and services. Carers UK is currently working with employers on the adjustments they have made in their businesses to accommodate carers.


6.9 Cost wise, there is likely to be some initial outlay for providers in adapting their services to make them more responsive. However, this should also have the positive effect of driving services to be more efficient and cost effective, particularly if facing increased competition. There are also advantages in simplifying and clarifying the grounds of discrimination in reducing the number of cases coming to court out of ignorance and hence saving money for service providers and claimants. This would be particularly helpful in the area of discrimination in services which is often less well understood than employment but has significant and devastating effects on carers' lives.


7 The Public Sector Equality Duty


7.1 Carers UK welcomes the principle of replacing the existing three public sector duties (race, disability and gender) with a streamlined single duty and the extension of this duty to the strands of age, sexual orientation and religion or belief.


7.2 However we do not believe that the single equality duty could be either inclusive or effective without addressing the discrimination, harassment and inequalities that are faced by such a significant and growing part of the population as carers. We believe that Section 75 of the Northern Ireland Act 1998 provides a good precedent for extending this protection to carers; it is not an untested duty and it provides useful learning. In summary it places:


"a statutory obligation on public authorities in carrying out their various functions (relating to Northern Ireland) to have due regard to the need to promote equality of opportunity -

between persons of different religious belief, political opinion, racial group, age, marital status or sexual orientation

between men and women generally

between persons with a disability and those without; and

between persons with dependants and those without


7.3 The Northern Ireland duty requires public authorities to regularly consult with "persons with dependants" or their "recommended consultees" on the policies and procedures that underpin the authority's functions, both as service providers and as current or potential employees. In general there are 3 stages to this consultation process: (1) producing an overall equality scheme (2) screening; and (3) impact assessment. Public authorities do not all have to follow exactly the same process, however they do have to include all of these stages.


7.4 The addition of the category of "persons with dependants and those without" was felt to be an important provision in Northern Ireland not just for the many carers affected themselves but also for the people who rely on them for support. For example, in her evidence to the UK Parliament Joint Committee on the Draft Disability Discrimination Bill on 7 April 2004, Dame Joan Harrison, Chief Commissioner to the Equality Commission for Northern Ireland, stated that "as well as disabled people, Section 75 covers people with dependants. This is particularly important in ensuring comprehensive rights for disabled people, many of whom rely on carers for support. If carers experience discrimination, this can have a knock-on effect on disabled people. Examples include additional costs incurred when disabled people need to be accompanied. Including carers within such an equality framework would help ensure that these issues are considered by policymakers."


7.5 During the recent review of the implementation of Section 75 by public authorities in Northern Ireland, public bodies and other respondents highlighted the many positive outcomes, including:


Integration of the duties into corporate strategic objectives

Structural change including appointment of equality officers and location of these officers in Chief Executives' departments

Involvement of affected groups through consultation and participation

and specifically regarding carers:

51% of public authorities reported increased opportunities for people with and without dependants

For the first time policies have been assessed for their impact on carers and parents

Specific examples include:

Two Education and Library Boards piloted a new policy on home-based working for the benefit of people with dependants to be rolled out cross all Board areas

The Equality Impact Assessment (EQIA) on Pay Scales undertaken by the Colleges of Further and Higher Education identified the potential impact of disrupted pay affecting staff with caring responsibilities

Belfast Institute started to open on Saturdays, specifically to provide access for those who reported difficulty attending college during the week, including those with caring responsibilities

SHSSB EQIA on Temporary Transfer of Services identified a need for the provision of a bus service during a temporary transfer of service between two hospital sites to mitigate adverse impact on persons with dependants, older people and disabled people

Fermanagh District Council EQIA of Community Relations Grants Policy found that the previous policy had a possible adverse impact on some groups e.g. people with dependants and disabled people, who required additional funding due to the increased access costs. Grants were then raised for these groups

Derry City Council worked in partnership with local voluntary and community groups to design and deliver an Equality Awareness programme for Council staff which included training in relation to people with dependants, disability, age, learning disability and mental health.

The British Council for Northern Ireland raised awareness of untapped additional funds in European programmes which enable better equality of outcome e.g. funds to enable carers to accompany children with learning disabilities, thus ensuring full participation in the programme.


7.6 We would recommend that consideration be given to the precedent of Section 75 in Northern Ireland with the Section 75 definition being amended from "persons with dependants" to "persons with caring responsibilities". We believe that a similar positive duty in the UK would roll out the positive impacts carers already experience when public authorities do take their needs into account as above.


7.7 We believe that a public duty to promote equality in public services would be the single most effective way of providing recognition for carers, which as our surveys have shown is one of the top concerns of carers.


7.8 We believe that the public sector equality duty should include an explicit requirement for public bodies to build equality considerations into their procurement processes. We believe that this approach, coupled with the provision of practical guidance and the development of an "Equality Standard", would be the most effective way of encouraging and embedding good practice.


7.9 In conclusion, we believe that implementing proposals on the above lines - i.e. learning from the strengths and weaknesses of the existing three public sector equality duties and addressing the daily discrimination faced by carers - would lead to an inclusive and robust single public sector equality duty which would have very real benefits for public sector organisations, their employees and service users. We also see this form of protection for carers as very important both in implementing equality and tackling discrimination in the public sector and in driving change (through example and directly through procurement processes) in the private and not for profit sectors.


8 Private sector commitment and support, guidance, advice and information for employers


8.1 We believe that employers, particularly small employers, should be given more support to enable them to implement equality legislation and other requirements for supporting their staff. There should be a dedicated service for SMEs which is able to assist employers and employees with the support they need around all aspects of care i.e. not just with employment rights but also about accessing appropriate care services.


8.2 Targeted materials for employers, including case studies, are an important way to inform employers about their obligations and to encourage the spread of good practice. Carers UK has recently re-launched Employers for Carers as a membership forum, along with a group of leading employers, and this will be an important forum for sharing information and good practice. We hope that Government departments, including DWP, will play an active role in this forum.


8.3 We also believe that it is important that consideration be given to assisting the development of good practice not only in the private sector but also in the not for profit sector, particularly given its increasing role and importance in the delivery of public service contracts.


Dossier on discrimination

Carers UK can provide more examples of cases where carers have been discriminated against in all of the areas set out above and how this affects them in their day to day lives. We would be able to match this against what should happen if we were to have more provisions which prevented discrimination and promoted equality.


November 2008