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A “gloriously ordinary life’’: spotlight on adult social care Contents

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Chapter 3: “The hope that things are going to get better”: the reality of adult social care today

What does it feel like to be drawing on adult social care today?

82.This chapter looks at the daily lives and realities of disabled people and older people who draw on social care, as well as of unpaid carers. The aspirations that disabled people and older adults have for independent living, choice and control stand in sharp contrast with their daily reality and this impacts deeply upon the lives of unpaid carers. We explore how the services provided in adult social care are not only influenced by limited resources, but also by deeper cultural habits—a fear of ageing and what it might bring, as well as negative images that are held of disabled people and older adults. This has led, in policy and in practice, to misleading assumptions that are made about what individuals with care needs want and what they can do, and has directly inhibited what social care policy should aim to provide. Much of the evidence we received reflects a failure to match even the basic expectations of today, as well as a failure to anticipate or to plan for the future, particularly for the growing number of people without children.

83.These assumptions and the risks inherent in them for the future directly impact on all aspects of the lives of unpaid carers. We look closely at the reality of their lives as they strive to find the right support for their families and friends, as well as for themselves; and the toll that this takes on their health and wellbeing at a profound level.

Stigma and discrimination against older adults and disabled people

84.The relative invisibility of the adult social care sector takes many forms but it also reflects the lack of empathy that many disabled people and older people experience in their daily lives. People who draw on care are seen, too often, as set apart, different from and essentially not equal to other citizens.

85.While the Equality Act 2010 protects people from discrimination or unfair treatment on the basis of certain personal characteristics, which include age and disability,115 it does not always hold in practice. Disability Rights UK pointed to antiquated notions by which disabled people were “people who had something wrong with them” and stressed that this stigma still underpins much of modern society’s views on disability: “Coming to disabled people, we look back and our lives might not be valued equally. We still find this today.”116 We come back to the Equality Act in Chapter 6.

86.Disability is frequently associated with false assumptions made about the amount of care disabled people need and how productive they are. This contributes to an overarching narrative that portrays disability as a problem. A study carried out by disability charity Scope in 2018, for example, found that up to 75% of respondents thought that disabled people need to be cared for some or most of the time.117 Around one in three (32%) people said that they thought disabled people are not as productive as non-disabled people at least some of the time.118 The survey also found that the public’s understanding of the prevalence of disability is inaccurate. The proportion of disabled people in the general population is 22%;119 yet six in 10 respondents thought it was 20% or less, and four in 10 respondents thought it was 10% or less.120

87.Witnesses shared anecdotes with us to reflect how stigma and discrimination against disabled people can occur on a day-to-day basis. One expert by experience from Disability Rights UK said:

“Often, it is not the disabled person who is talked to. It is our families, our carers and the people around us. Quite shockingly sometimes, in a shop, someone will talk to the person with me, even though I have the credit card. I find that extremely annoying. Again, these things are so embedded in our society. It is the notion of what is valuable.”121

88.‘Ageism’ is also alive and well.122 One witness told us that “we place a really low value on older people generally”.123 Older people are frequently seen as passive, frail, vulnerable and dependent. As a society, we see them as a “burden” and a “problem to fix”.124

89.The Centre for Ageing Better told us that their own research has found that ageing is framed as a process of inevitable decline towards death.125 In advertising, ageing is often shown as something that needs to be fought and resisted, for example with anti-ageing products.126 The advertising sector also tends to caricature older age, with older adults often portrayed as inactive and powerless to act.127

90.In the media, it was found that older people are often framed as inherently vulnerable, for example in the context of scams, which contributes to the idea that older people do not have any agency and have no control over their lives.128

91.Political discourse is also problematic. The study carried out by the Centre for Ageing Better established that older people are usually associated with heightened pressure on public services, which contributes to portraying them as a burden and a drain on resources. We were also told that political discourse often perpetuates intergenerational conflict by pitting younger generations against older generations in a fight for resources.129

The forgotten purpose of adult social care

92.The stigma and prejudice directed against disabled adults and older people has tangible repercussions in the way that key services in society are designed to meet their needs and ambitions. The underlying narrative and the lower value that is placed on certain individuals, which originates in the assumption that they are a ‘burden’ on society, entails an assumption that a more restricted kind of life is appropriate for older adults and disabled people, with the expectation that they will accept a different and reduced quality of life compared to the rest of the population.

93.One of the most visible illustrations of this is the neglect of the needs of disabled people and older adults in the built environment. The Government’s National Disability Strategy, published in 2021, stated that only one in 10 homes in England have at least one adaptation for disabled people;130 only a quarter of train stations have step-free access between all platforms;131 and of the 10 most populated English county councils’ websites, nine did not meet accessibility standards.132 These all reflect society’s failure to recognise or respect what it means to be a disabled or older citizen, and to provide the basic requirements enjoyed by everyone else.

94.Ian Loynes, an expert by experience who is also the CEO of SPECTRUM Centre for Independent Living, told us:

“There is a notion that, once you become disabled, you are automatically dependent and you need somebody else; you are just looked after and you are wasting your life until you die. That is not the reality for any age or for any disabled people.”133

95.The dramatic consequences of stigma and discrimination on social care services was felt particularly acutely during the COVID-19 pandemic. One witness told us that the crisis “really did show us that we had not made the gains that we thought we had made,” as disabled people and older adults felt that they were treated differently from other citizens. 134 One unpaid carer to her mother, who has dementia and lives in a care home, told us that during the pandemic, she felt as though her mother was “in prison” because her “human rights had been completely stripped away” as she was left on her own with no one to advocate for her.135

96.The purpose of adult social care should be to challenge these perceptions and to enable older adults and disabled people to live a life of their choice. One expert by experience told us:

“I just want to get on and live my life like other people, and I need the assistance to be able to do that. That is what social care should be about. It is about enabling us all to fulfil our ambitions and what we want to do in everyday life, as people who do not need to use assistance services would just take for granted.”136

This understanding of the purpose and outcomes of adult social care is aligned with that of many other stakeholders.137

97.These definitions of the purpose and outcomes of adult social care are far removed, however, from the reality of adult social care for most people. One expert by experience wrote to us that in reality, “it is as if adults in social care don’t matter that much.”138

98.We heard instead that social care services focus on providing older adults and disabled people with the minimal care and support that is necessary to meet their most basic needs. The Wiltshire Centre for Independent Living said: “When being assessed for care services people are told what they need to live a basic existence in terms of personal care.”139 Inclusion London added that social care support is largely regarded as support to meet basic personal care needs as opposed to support to ensure people can live a normal life with equal choices and rights.140

99.Disability charity Leonard Cheshire, for example, pointed to research finding that the lives of working age disabled people have been curtailed due to inadequate social care and support over the last 12 months. This has meant that 41% have not been able to visit family and friends; 36% have been unable to leave their house, shop for food or clean their home; 33% have been unable to partake in their hobbies; and 28% have not been able to prepare a meal.141

100.During our visit to a disabled people’s organisation in London, one participant also linked the shortcomings of care services to the discriminatory view that older adults and disabled people cannot or should not live equal lives. The participant said disabled people were not seen as productive human beings, and instead were made to feel that they should be grateful for the “tiny” amount of support they receive to cover their most basic and urgent needs. They argued that support barely existed beyond this or was too difficult to access.142

101.We heard that as a result, social care assessments are too often a “tick-box”143 exercise: services are provided to cover essential needs once a person meets the right eligibility criteria, or ticks the right box, making for a highly impersonal system that leaves no room for a person to express how they could be empowered to live a meaningful life beyond basic personal care. This is aggravated by local authorities facing reduced budgets: they are more likely to act as ‘gatekeepers’ to keep people out of the system. This is missing the ‘social’ aspect of care, and instead makes for what one expert by experience described as a “medicalised” model of care:

“The thing about the NHS is that it is very transactional. Even if it is positive like having a baby, it is still transactional. You want some support, you want this, you want that; it is an exchange, and you get a result. We try to apply the same principle to social care … but nobody has the conversation about what would really enable you to keep living the life you want to live.”144

102.In spite of policy rhetoric and genuine attempts to embed new approaches, social care is an inflexible system. There is very little scope to personalise care packages to each person’s ambitions and aspirations. Instead, people are expected to adapt to the narrow range of services that are on offer. One expert by experience told us an anecdote concerning their friend who has some social care support, and who used their funding to pay for a season ticket for an assistant to accompany them to see the football on weekends. This enhanced the person’s life while giving a break to their wife every week; it was cheaper than traditional services, achieved a good outcome and was socially inclusive; and yet it was faced with fierce criticism in the media and from the general public. “Somehow we have to get over that,” we were told. “I suppose we have to ask the general public: ‘If something happened to you, what would you want in your everyday life?’”145 In most cases, it is not a question that is asked to older adults and disabled people when they are assessed for social care services; and their response to it is not seen as relevant.

103.Social care services, therefore, find it difficult to listen to what people who are in receipt of care have to say about their personal needs, ambitions and desires.146 We were told that conversations rarely happen which would help social workers to genuinely understand what it takes for a person to live the life that they want, continue to go to work, practice a hobby or look after their children. Instead, services are provided in a top-down manner, and people are expected to adapt their lives to the generic offer they are presented with.

104.This often happens despite the best efforts of social workers. Many witnesses described to us the valuable work carried out by some social workers and local authorities, who support the vision of adult social care as an enabler for people to live an equal life, but eventually find themselves unable to achieve this vision in the current system. One expert by experience told us that many social workers who have “a creative thrust and social justice” are met with a system that requires them to become “checklist completers and box-tickers.” The same witness concluded: “They want to be able to use their skills, and support people in a progressive and empowering way. I think the system is failing them as well.”147

Trust and power: local authorities as gatekeepers

105.In this system, access to appropriate social care services was described to us as extremely difficult to achieve. Because local authorities carry out assessments of needs based on narrow eligibility criteria, people are pushed out of the system until their needs become extreme and urgent. One expert by experience described to us why she is not eligible for support: “I have the misfortune of being able mostly to hold down a job, or work.” If her life was “in a really bad place,” she anticipated, then she might qualify for support.148

106.This is due, to a large extent, to a lack of resources. As the last chapter outlined, cuts in services have meant that many local authorities have felt that they have had no choice but to increase thresholds for eligibility for services to try to reduce demand, which leads to higher levels of unmet need. The LGA quoted research showing that just over half a million people are currently awaiting a care needs assessment, a care package, a direct payment or a review of an existing care plan.149 The CQC’s latest data shows that in January and March 2022, 61% of councils said they were having to prioritise assessments and were only able to respond to people with specific circumstances.150 Laura Gaudion, the Interim Director of Adult Social Care and Housing needs at the Isle of Wight Council, told us: “We do the very best we can with the resources we have available. There are things we cannot subsidise. There are challenges we cannot resolve.”151 Despite trying to find concrete solutions in current circumstances, therefore, the lack of resources was frequently depicted as the main hurdle to effective change and transformation.

107.Local authorities and social workers face significant challenges in the provision of social care, therefore, but the difficulty of accessing care and support is such that they are often seen as rationing services for older adults and disabled people. The need to stretch inadequate budgets across as many people as possible can lead to the codifying of a penny-pinching approach to assessment, which is at odds with the purpose of adult social care. During our visit to a disabled people’s organisation, one participant explained that social workers had repeatedly re-assessed her needs in the past years in order to reduce the amount of care she was provided, trying every time to make her agree to care packages that she found inappropriate; for example, to provide her with night pads instead of care throughout the night. We were told that the approach taken to assessments by some social workers is “offensive”, and people frequently described to us as having to relentlessly “fight” against their local authority in order to access any form of care or support.152 Such a situation where trust has broken down is extremely challenging both for the person and for the social worker. There is a widespread view that the concept and practice of assessments are unfit for purpose and outdated, and currently act as an obstacle to a social care system that enables people to live fulfilling lives.

108.Those who are assessed for their needs do not feel able to challenge the outcome of their assessment, even if the support they will get as a result is not sufficient to meet their needs. Another participant to our visit to a disabled people’s organisation told us that people are “scared to fight” and have to be “appreciative of the tiny bit of care they get.”153 The participant recalled how, after they had tried to challenge the outcome of an assessment that provided their grandmother with only 15 minutes of support a day, they were told to lock their grandmother up at home if they needed to leave her to go food shopping.154 Belinda Schwehr, the chief executive of specialist advice charity CASCAIDr, who has previously practiced as a barrister, described at length the difficulty of challenging the decisions made by local authorities. For the majority of people who have no legal training, therefore, it is seen as practically impossible to challenge the outcome of an assessment, which results in them usually taking “what they are given” and being “expected to be grateful.”155

109.Often, as a result, people feel powerless in the face of their local authority and some live in constant anxiety that services will be reduced or altogether removed from them. One expert by experience described to us that whenever they contact social care for a review, advice or a support, they fear their budget will be cut: “Just by contacting them and them getting more involved in my life, suddenly things might start getting pulled away.”156

The role of friends and families

110.This lack of choice and control extends to people’s relationships with their friends and families. Against a background where there are 165,000 vacancies in the social care workforce, we were told that there is an expectation from local authorities that families will provide most of the support for their person they care for, and that this support can be relied upon and used as a way of cutting budgets or minimising expenditure.157 One expert by experience recalled how, when he turned 18 years old, his local authority asked his father to provide more support, requiring him to cut his working hours to three days a week. Now 15 years later, the same witness described his fear that the local authority will cut his social care budget because he is moving near his father again, who although he is past his mid-70s, might still be expected to provide care and support for his working age son.158

111.There is, therefore, an embedded narrative by which care and support should come from families first, leaving no room for individuals with care needs or unpaid carers to exercise any choice over their relationship with each other. “Carers feel that they must do whatever the local authority says the local authority will not do, or else that they risk their loved one being taken away and being stuck in a care home,” said Ms Schwehr.159

112.While many older adults and disabled people would continue to choose to draw on care and support from their friends and families, or unpaid carers, there are also many who do not wish to choose this arrangement. Unpaid carers can also feel obliged to step into the caring role and fear they will be judged if they do not or cannot provide care. One expert by experience told us: “You want to have an ordinary relationship with your friends and the people in your network. You do not want a relationship where there is an expectation that they will come along and help you do things.”160

113.The social care system, however, is not built to account for the fact that some people may not wish to rely on friends and relatives to lead a fulfilling life; even though, in the case of a disabled child, for instance, this might mean living an adult life aligned with the expectations of their parents or siblings, rather than their own.161

114.Given that there is relatively little help or guidance to enable independent living, such as direct payments and personal assistance, finding alternative forms of care was described to us as an “uphill battle”.162 One witness told us that the current system “simply does not work” for those who do not wish to receive care from family or friends, and that there is “a lot of bureaucracy if people wish to take control.”163

Ageing without children: failing the future

115.Adult children are the most common providers of unpaid care to their parents when they reach older age and their care needs are greatest.164 The assumption that older adults and disabled people have families and friends that will provide care and support for them therefore has tangible implications for the fast-growing group of people who, for whatever reason, are ageing without children. They might have not had children through choice, infertility or other circumstance; for example, they or their partner are unable to have children, or they did not meet someone with whom they wished to have children. It might also be that they have children, but those children have predeceased them, have care needs of their own, or are unable to provide care and support because they do not live close, or are unwilling to.

116.The Office for National Statistics (ONS) says that while one in 10 women born in the cohort that followed World War Two did not have children, this increased to one in five women born in the 1960s cohort. In addition, women born in the 1960s cohort will have longer lives, meaning that they will reach older age without children to provide unpaid care and support.165

117. As discussed above, many other groups who might find themselves ageing without children for different reasons. Changes in social attitudes, values and behaviour are also contributing to the increasing number of people ageing without children, with many individuals unable to rely on support from their children, who might have moved away from their families because of work commitments. Ageing Well Without Children estimates, therefore, that there are currently around 1.2 million people over the age of 65 ageing without children, which is set to rise to 2 million by 2030.166 Research commissioned by the charity Independent Age concluded with a similar estimate: it found that 15% of older people are without children, which represents about 1.5 million people.167 This number was estimated to reach 4 million by 2040.168 For them, we were told that the prospect of ageing causes great fear, as the current system is ill-prepared to respond to their needs. This fear is not just of loneliness—ageing without children brings tangible challenges, such as in undertaking low-level support tasks, personal tasks and navigating the complex social care system.

118.There is real difficulty in estimating the exact number of people ageing without children, which reflects the fact that there is a “complete and utter lack of data”.169 Data is only recorded on the number of women who do not give birth; no data exists about men ageing without children. This data also does not include the numbers of people estranged from their children, those whose children have predeceased them or those who live far from their children. Any estimate for the cost and provision of social care for this population, therefore, cannot be reliable. This reflects the fact that planning for their needs is not a policy priority.170

119.What we do know, however, is that the system is not designed or prepared to respond to the needs of this group. People ageing without children, as a result, often fall into the formal care system earlier. The organisation Ageing Well Without Children said that people ageing without children are significantly more likely to move into a care home, at a younger age and a lower level of need, “simply because there are no other options out there.”171 This is symptomatic of a system that leaves little choice or control to those who do not wish to, or cannot, rely on the care and support of unpaid carers.

120.The future looks extremely hazardous for people ageing without children, and yet they are a fast-growing group.

121.The Government should implement mechanisms to collect more accurate data on the number of people ageing without children, including men who do not have children, people who are estranged from their children, or people whose children have pre-deceased them.

122.Further research is required to understand the prospects of people ageing without children. The Government should work with charities, civil society and academics to understand how their needs can better be met.

What does it feel like to be an unpaid carer today?

What do we owe the unpaid carer?

123.Throughout our inquiry, we were reminded of the huge value of the contributions unpaid carers make, including in basic economic terms. Unpaid carers effectively provide a significant portion of the caring that individuals who draw on social care services need. They are therefore a fundamental pillar of the adult social care system, despite many not actively choosing to become an unpaid carer. One unpaid carer told us: “The system should treat us as the bedrock of healthcare and social care, because that is what we are. Without us, the whole thing falls into a hole.”172

124.Putting an exact figure on the economic value of unpaid care is difficult and estimates vary. The ONS estimates that the gross added value of unpaid care in the UK was £59.5 billion in 2016.173 The Nuffield Trust wrote that unpaid carers provided care worth £193 billion per year during the pandemic.174 Professor Sue Yeandle, the Director of the Centre for International Research on Care, Labour and Equalities (CIRCLE) pointed to a figure of £132 billion per year, which she argued was the product of a methodology that was considered the best method for the purpose.175

125.What is certain is that these figures are significant, and that the state could not afford to replace the work of unpaid carers with formal care services. Dr Valentina Zigante, from the London School of Economics, told us: “We know very well that carer breakdown is what causes people to need to go into residential care. It is massively costly in economic value to society.”176 In other words, without the work they carry out, the strain on formal social care services would be immense. Yet it is clear that many unpaid carers are effectively at risk of breakdown. A survey carried out among councils in spring 2022 showed that 73% reported rising numbers of breakdowns of unpaid carer arrangements.177 We were told by unpaid carers themselves: “It’s not possible to pour from an empty cup, so if there is no support for carers to rest and to have a tiny modicum of a life, they will continue to burn out and then two people will need state support.”178

126. One witness pointed out that was not only a moral imperative, but that it also made economic sense, given the significance of their economic contribution.179 One expert by experience put it simply: “Someone—the state or whoever—has to say to people, ‘Please look after your family and we will help you to do that’.”180

127.We heard the stories of husbands, wives, mothers, fathers, daughters-in-law, brothers, sisters, friends, neighbours and many others who were providing unpaid care and support. They told us, most often, of the joy and fulfilment it brought them. One unpaid carer described to us how much she and her family have learnt and grown from providing care to her 23-year-old daughter with severe learning disabilities.181 Another unpaid carer to her daughter portrayed her experience in the following terms:

“Maddie is a really beautiful person inside and out and is incredibly tolerant of us. She has taught us all a huge amount. I would describe my beautiful daughter as the beating heart of our family. I would say that we are all better people for having her in our lives.”182

When it is the result of a genuine choice made by the person and by the unpaid carer, and with the right support, therefore, caring can be a life affirming experience.

128.But many unpaid carers face an alternative future. The expectation that friends and families should provide unpaid care not only takes away any choice or control from older adults and disabled people, but it also denies a fundamental choice to unpaid carers themselves, who often find that they have little or no say in the amount of support they are expected to deliver. One unpaid carer told us: “I do not think I have any choice. There is no choice for me in the hours that I provide in care, the shifts I do or the holiday I take.”183

129.The pressure to provide unpaid care does not affect everyone equally. Overwhelmingly, it is still seen as a female role. One witness described it as “a culture in which carers, and that means mainly women, simply step up.”184 Up to 58% of unpaid carers in the UK are women.185 Similarly, different cultural expectations prevailing in some Black, Asian and Minority Ethnic (BAME) communities mean that people from BAME backgrounds are more likely to be carers, as well as to provide longer hours of care, compared to white carers.186 This in turn means that the detrimental impacts that unpaid care can have on financial, physical and mental well-being are likely to be felt more acutely by these groups.

Financial, physical and emotional strain

130.Unpaid care comes with significant challenges, and many carers told us that it involves varying degrees of sacrifice. “You need to change your mindset to be able to survive,” said one unpaid carer;187 another told us: “It is not what you want, it is what you need. If you reduce your life to what you need, you can cope.”188

131.One key challenge is financial. Unpaid carers who provide many hours of support every week are more likely to be unable to remain in employment, meaning that they cannot rely on a regular income. One unpaid carer described to us how he went from working 60 hours a week as a senior manager in an IT company, to leaving his job to provide full-time care and support to his wife, who has multiple sclerosis, and having to sell his house as a result.189 We heard from another unpaid carer who at 46 years old had been a university graduate with a background in international relations and experience in licensing law, but who had had to give up work and become a full-time carer for her parents, husband and children.190

132.Where carers are eligible for benefits, they more often than not live precariously and in poverty. In England and Wales, those who care for someone at least 35 hours per week and earn less than a certain amount per week are eligible for Carer’s Allowance, which since April 2022 provides £69.70 per week. This represents just under £2 per hour; in contrast to the National Living Wage, which stands at £9.50 per hour for individuals over the age of 23.191 We heard from an unpaid carer in this position, for whom it means an annual income of £3,624.40, which she described as “outrageously low”. It has meant using up all her savings and still not being able to afford basic necessities like prescriptions or transport.192

Box 2: Carer’s Allowance

Carer’s Allowance is the chief benefit for carers. Carers either have to live with, or be related to, the person they are caring for. As of 2022/23, this benefit is worth £69.70p per week per week for those claiming it. Carer’s Allowance is not based on the carer’s income and capital nor that of their partner, so the benefit is not means tested. However, Carer’s Allowance cannot be paid if the carer’s earnings from work are over a cap of £132 per week.193 Due to ‘overlapping benefits’ rules, Carer’s Allowance cannot typically be paid to a carer if they receive one or more of the following benefits: state pension; contributory Employment and Support Allowance; Incapacity Benefit; Maternity Allowance; Bereavement or widow’s benefits; Severe Disablement Allowance; or Contribution-based Jobseeker’s Allowance. The carer, however, can be paid a small amount of Carer’s Allowance to supplement the other benefits they receive, if any of the above benefits are under the amount of the Carer’s Allowance. 194 Carer’s Allowance eligibility is determined by three sets of criteria concerning the carer, the person drawing on care and the type of care provision. The carer must meet all the following criteria: aged 16 or over; caring for at least 35 hours per week; resided in England, Scotland or Wales for at least two of the last three years; normally live in England, Scotland or Wales, or lives abroad as a member of the armed forces; not subject to immigration control; earns £132 per week or less after tax, National Insurance and expenses are deducted; not in full-time education; and studying less than 21 hours per week.195 The person who draws on care must already receive one of the following benefits: the daily living component of Personal Independence Payment (PIP); the middle or highest care rate of the Disability Living Allowance; Attendance Allowance; Constant Attendance Allowance at or above the normal maximum rate with an Industrial Injuries Disablement Benefit; the basic (full day) rate of Constant Attendance Allowance with a War Disablement Pension; Armed Forces Independence Payment; the daily living component of Adult Disability Payment; or the middle or highest care rate of Child Disability Payment.196

133.While it is not always the case that unpaid carers have to give up work altogether, there is a wealth of evidence to show the impact caring has on the ability to work. The Social Research Institute CLOSER, University College London, pointed to research showing that around one in seven working carers reduce their economic activity in midlife, and that even 10 hours provision of unpaid care a week by people in midlife has negative consequences for employment.197

134.The chances of not being able to work increase as more care is provided. Six in 10 of those who are caring for 35 hours or more a week are not in work, three times the rate of those caring for less than 20 hours a week. Those caring for 20 to 35 hours a week are also less likely to be employed, with around a third not in work or not able to work. Of those carers who are working, those with higher caring responsibilities (more than 35 hours or 20 to 34 hours) are more likely to work part-time than those providing lower levels of care (less than 20 hours): 43%, 32% and 29% respectively.198

135.Even for those in employment, caring can impact their ability to enjoy, perform or work full-time. A recent survey by Carers UK has shown that 75% of respondents worry about continuing to juggle work and care, while 65% had given up opportunities at work because of caring. The survey also found that 29% of respondents had already reduced their hours at work as a result of caring, and a further 11% felt they needed to, to help manage their caring responsibilities.199

136.The Joseph Rowntree Foundation shared statistics that clarify the link between unpaid care and poverty, particularly for unpaid carers who provide more hours of support: the organisation’s research found that in 2019/20, 44% of working age adults who were caring 35 hours or more a week were in poverty. This compares to 21% of non-carers.200

137.Unpaid carers are therefore particularly at risk of increasing poverty as the cost of living crisis bites week by week in the UK. A recent survey carried out by Carers UK paints a worrying picture of the next few months, with 75% of unpaid carers saying that they are stressed or anxious about their finances (compared to 52% in November 2021).201 The survey found that three-quarters of unpaid carers worried they would have to cut back on heating, and that a third were worried they would have to use a foodbank.202

138.Many carers stressed that Carer’s Allowance is the lowest benefit of its kind, which is reflective of the value that is placed on unpaid care. In addition, the threshold to claim Carer’s Allowance was described by many stakeholders as too high. Carers’ Trust, for example, said that the system for claiming Carer’s Allowance is so restricted that more than half (51%) of unpaid carers responding to the organisation’s ‘Pushed to the Edge’ survey question on whether they were able to claim Carer’s Allowance said they were not.203 The We Care Campaign wrote that the current benefits system has failed to keep up with societal changes in the job market, the cost of living and the fact that family carers are giving up their economic stability to provide support in the absence of any other care solution.204

139.We also heard that unpaid carers face significant health challenges, both physical and mental. They are more likely to be unwell, frail and at risk of vulnerability. One unpaid carer told us: “I can honestly say that I have been exhausted for 22 years. I have not slept for 22 years. I have not had a respite for 22 years.”205 Research carried out by Carers UK based on unpaid carers’ responses to the 2021 GP Patient Survey confirm this: it found that 60% of carers report a long-term health condition or disability compared to 50% of non-carers.206 Personal health is neglected as the focus is relentlessly on the daily need to provide care to a partner, friend or member of their family.207 The Nuffield Trust also noted that the 1.3 million people who provided more than 50 hours a week of unpaid care during the pandemic face an impact on their health equivalent to the loss of 18 days in full health for every year spent caring.208

140.There are also impacts on mental health. CLOSER’s research noted that unpaid care is linked with lower levels of baseline and follow-up wellbeing measures.209 A recent survey carried out by Carers UK found that 30% of carers said their mental health was bad or very bad; and 29% said they felt lonely often or always.210 This is confirmed by unpaid carers who told us that they feel exhausted, isolated and emotionally unwell. One unpaid carer told us:

“I was helped by the psychiatrist, because they wrote to the system to say, “With the stresses and strains Mr Phillips is under, he is near-suicidal, so you either help him or he isn’t going to be around to help the person”. I literally was at my wits’ end. I did not know how to cope.”211

The inadequacy of support for unpaid carers

141.Despite the importance of providing support to unpaid carers, and the scale of the financial, physical and emotional issues they face, there is little recognition or understanding of these challenges in wider society. Unpaid carers bear their own burden of invisibility: they described to us how they feel forgotten, alienated and left behind. One unpaid carer told us that they feel “pushed to the fringes of society” and “completely ignored”.212 Unpaid carers, therefore, are at once taken for granted, and let down: there is an expectation that they will support the person they care for, but little recognition of the challenges they face, or their own expertise in caring. Ultimately, this was perceived by unpaid carers as a societal failure to value unpaid care, despite the significance of unpaid carers’ contribution. One unpaid carer challenged us by asking: “If we really deliver £132 billion to the economy through the work we do, that saves every UK taxpayer about £900 a year in tax. Are you just going to abandon those people?”213

142.The physical and emotional challenges faced by unpaid carers can also be linked to the difficulty of accessing short breaks. Many witnesses told us that they have not been able to take a break from caring in many years, with one witness saying that she had not had a break or a day off in eight years.214 Age UK highlighted that a very small proportion of carers are receiving breaks to help them cope. According to the organisation, only 1% of carers have needed and been able to access respite care or support (for 24 hours or more) in the three months up to March 2022.215

143.Evidence suggests that rather than getting more support, unpaid carers are now getting less. The Nuffield Trust identified what it calls an “erosion of support” in recent years: it found that the number of unpaid carers receiving direct support (payments, personal budgets, or support commissioned by councils) dropped by 13,000 between 2015 and 2021. Further analysis shows an 11% drop (19,000) in carers receiving respite care compared to five years ago.216 For many unpaid carers, this shows that wider society is not interested in their hardships. We were asked: “When is the help coming? … If you could deliver one thing for carers, it would be hope that things are going to get better and that the system is going to value us.”217

Failing to connect with unpaid carers

144.The isolation that marks the lives of unpaid carers and underpins invisibility is compounded by the fact that unpaid carers frequently appear to be out of sight or marginal to the health and care professionals also involved in providing support, who are often not aware of how much knowledge carers accrue in their caring roles. The unpaid carer is rarely considered an equal partner in care. At worst and in some cases, this can result in hostile relationships between unpaid carers and staff, with many unpaid carers saying that they are seen and treated as a problem. One unpaid carer wrote: “By professionals in the NHS we are not wanted at all. They see us as a nuisance… We know we are not listened to and not heard. We are kept out of ward rounds, meetings, denied paperwork, email addresses, phone calls.”218 Another recounted that “An O.T. who visit you in your home, and dismisses the person who does the main caring and refers to them as the ‘the toenail cutter’ makes a carer feel small, undervalued”.219

145.Carers Trust described to us how unpaid carers are excluded at multiple points of the care pathway. They are not listened to or informed of important information that is required to support the person they provide care for.220 This lack of consideration for unpaid carers can be tangible: one unpaid carer explained how, when their partner is in hospital, they felt as if they had “no rights”, with no dedicated spaces for them to sleep, eat, go to the toilet or get a drink. “We are not seen as a true workforce, if you like, or partner providers for the NHS and social care,” they said.221

146.Discharge from hospital was frequently referred to as a key transitional point in which the failure of health and care staff to communicate and acknowledge the role of unpaid carers was particularly problematic, and often led to unsafe outcomes for the person coming out of hospital. One unpaid carer described how her older mother was once discharged and parked on the street in her wheelchair with the key dangling off the handle while she was away because staff were not insured to turn the key in the lock and enter the property. This was not information that was communicated to her prior to discharge. The witness said:

“Imagine a blind lady who is already very vulnerable and rather unwell for many other reasons, finding herself on the street with everybody coming and going past her, not really knowing where she is or why she is there, while I run after her, catching two buses… racing home to ensure that she is not left alone for too long after being dropped off.”222

Navigating the social care system: a constant fight

147.Whether it is trying to get support for themselves or for the person they provide care for, unpaid carers often find that they are left to their own devices when it comes to navigating the adult social care system. Explaining to us how she worked through possible options for financial or emotional support, one unpaid carer told us that “you have to mine that information yourself.”223 Another witness noted that carers “burn up a lot of resource in the system asking questions.”224 Dementia Carers Count pointed to the failure of services to signpost carers, saying that “all too familiar” experience shared by family carers is to find out support by chance, for example through a conversation with another family carer or a reference from someone at the dementia café.225

148.This is compounded by the fact that the social care system makes it very difficult for unpaid carers, both to identify support for themselves and to organise formal support for the person they care for. We were told that the social care system makes no sense, with one witness recounting that he was given 32 pamphlets in his local hospital after he introduced himself as a carer.226 An unpaid carer described their frustration when trying to get more information about local adult social care services and finding that the process was left entirely up to her. “There must be many people who are overwhelmed by the ad hoc nature of adult social care and who find it almost impossible to navigate their way through the maze,” she wrote.227

149.In many cases, unpaid carers described the experience of accessing care and support for themselves and the person they provide care for as a constant fight. An unpaid carer to their daughter with learning disabilities wrote that, as the person dealing with all the relevant agencies since her daughter was born, she found that “at every stage to some extent there have been reels of red tape to negotiate, and authorities to battle with.”228 One witness who has provided care to their daughter for 23 years described her relationship with social services as “battle after battle after battle”.229 She explained that, instead of being able to rely on local authorities and social services providing her with the advice, information and support that she needs, it is up to her to do as much research as she can herself and build up her own knowledge so that she is prepared to confront services with requests for specific support.230

150.The relationship between unpaid carers and social services can be similar to the one described by older adults and disabled people: one in which trust has broken. Because of the difficulty of accessing care and support, social workers and local authorities are seen as gatekeepers, and there is very little trust in the system’s ability or willingness to provide any help. Some unpaid carers told us that they live in fear of assessments, which they see as a process that is designed to minimise their needs, so as to deny them any support. One witness recalled telling a social worker that she did not feel able to continue caring for her daughter without a break; the assessment came back describing her as “tired”.231 The same witness described feeling undervalued and not listened to. “I always feel that I am lying. I always feel that they do not believe me, that I am making it up or that I am somehow exaggerating it.”232

151.Unpaid carers also share a fear of seeing services being taken away from them. One witness explained:

“At the moment, I am sitting on top of a funnel and I see all these other poor souls drowning, having their services taken away because the system cannot afford it. Every day, I live in fear that the water will come up to my feet, and then what will I do for my wife?”233

What happens if nothing changes? The risks of failing to reform

152.From all sides we have heard how adult social care is failing the people that it serves, despite the hard work and best intentions of people working in the sector. At the same time, the political will to tackle the scale of the problem and to significantly transform the system seems to be missing. Yet the risks of failing to reform are great.

153.As outlined in Chapter 2, from a demographic perspective, demand for adult social care is only set to grow. There is a continuing trend towards more people living longer with multiple long-term conditions.234 Current trends also point towards an increase in the prevalence of disability among working age adults. In 2020/21, 21% of working age adults reported a disability, compared to 15% in 2010/11.235 Given the current pressures and shortcomings of the system, reform is therefore critical. As Professor Donna Hall, formerly CEO of Wigan Council, told us: “The biggest risk we face in social care is not to change the way we do things, because the whole service will fall. Things will collapse.”236

154.Ensuring the sustainability of the sector is also critical to protect the NHS. Without a sustainable social care system to which patients can be safely discharged, NHS backlogs will only grow, and pressures on the overall system will intensify. Almost three-quarters (73%) of healthcare leaders say that a lack of adequate social care capacity has a significant impact on their ability to tackle the elective care backlog.237 For example, the failure to find suitable community placements is one of the reasons that patients stay in hospital for years.238 NHS statistics for July 2022 show that only four in 10 patients were able to leave hospital when they were ready to.239 As Mr Hunt made clear: “The reforms everyone wants for the NHS will fall over unless we address the issues in social care”.240

155.Creating a sustainable social care system in which people, their families and friends can thrive is a national imperative. Investment is cost effective both in economic and social terms, as a sustainable adult social care service is an indispensable partner to the health service.

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