Chapter 2: “Entrenched” invisibility: why does it matter?
45.In this chapter we look at the roots of the challenge set by the present status and prospects of adult social care. We explore the paradox as to why adult social care has been seen as largely ‘invisible’ in terms of the essential and increasing role that it plays in sustaining both society and the economy; and, until very recently, in terms of politics. When social care has come to national attention in recent years, the focus has been on the cost of care homes and paying for care for those who need it, as well as rising shortages in the paid care workforce. The intrinsic value of enabling good lives is not mentioned. It is therefore hardly surprising that when so much of adult social care is below the radar, the contribution of the unpaid carer is particularly invisible, and their voice goes unheard.
46.Despite the increase in people needing care and support, we heard from people who draw on care and support, charities and academics that adult social care is invisible. We even heard this from a previous Secretary of State for Health and Social Care. The Rt Hon Jeremy Hunt MP, Chancellor of the Exchequer and previously Secretary of State for Health and Social Care (2012–2018), noted that invisibility is “deeply entrenched”.64 Similarly, we heard that there is “very little understanding of the contribution of adult social care or about the workforce, unpaid carers and the people who receive care and support”.65 This invisibility can lead to those who draw on care feeling “that they do not matter.”66
47.A Carers Trust survey found that 91% of unpaid family carers felt ignored by the Government.67 Many told us how they also felt dismissed and alienated by the services themselves. We heard that “the invisibility of social care perpetuates the despair and does little to promote dignity, choice and fulfilment of life.”68 There are risks of increased loneliness, isolation, anxiety and depression due to chronic feelings of being undervalued.69 One unpaid carer said: “Most of us are desperate. Most of us are drained. Most of us are in a state of grief. We need support, we need recognition.”70 As well as having health implications for the individual carers, this increases the risk that care responsibilities are passed on to local authorities.71
48.Many stakeholders argued that the adult social care sector is more than invisible: it is also the subject of misconceptions among the general public, who often do not realise the diverse, versatile and positive role that the sector plays in society. Lucy Campbell, from Rights at Home UK, described the dominance of care homes in the media and political discourse, which does not reflect the variety of circumstances that exist within social care.72 The Bureau of Investigative Journalism similarly argued that while there was extensive news and political coverage of the impact of the COVID-19 pandemic on residents and staff in residential care homes, “a fraction” of the same coverage was being given to those receiving care at home.73
49.These views reflect the overwhelming majority of evidence that we heard. However, Ministers and civil servants challenged the idea that social care was ‘invisible’. Michelle Dyson, Director-General of Adult Social Care, Department of Health and Social Care, argued that the situation has improved in the last three years. She accepted that this was not all for a good reason—the COVID-19 pandemic has certainly placed the spotlight on the huge difficulties faced by the sector—but argued that there were reasons for being more positive. For instance, care workers have recently appeared on Ipsos MORI’s trust index of most trusted professions. Mr Hunt also thought that while the sector was in many respects still largely invisible, the situation is better than it was 10 years ago. He credited part of this to Theresa May’s Government changing the name of the Department of Health to the Department of Health and Social Care, resulting in Secretaries of State for Health having to pay “lip service to social care in a way that they did not before.” Mr Hunt added that “there is still a very long way to go”.74
Reasons for invisibility
50.There are a variety of reasons why adult social care is invisible, while also in plain sight. Many are complex cultural reasons, while others have a more obvious link to Government policy.
Public understanding and personal experience
51.First, the need for, and access to, social care is often viewed as something affecting other people—’them’, not ‘us’—and not a common cause for national debate or widely understood in all its complexity. This is because most people’s experience of social care is formed out of a crisis, when they are not best placed to think strategically. We were told that “many people only begin looking for information about services once they have reached a crisis,” with detrimental consequences for their own health and wellbeing.75 In other words, people who need to access social care are often on the backfoot from the start.
52.Consequently, experience of social care is partial, unpredictable and associated, usually, with growing older and more dependent. The universal significance of social care as underpinning so much of our ability as a community and an economy to function, and the essential nature of it when it is needed is often missed and is seen as less of a priority.
53.It is also out of sight for the obvious reason that it is seen as a ‘private’ undertaking. Social care happens behind ‘closed doors’ and those who draw on it or provide it are not routinely present in the public space. Some have therefore described it as a “Cinderella service”: it is down to families to pick up the work not undertaken by adult social care professionals.76 There is also an assumption from policy makers and professionals that families, especially women, will provide care and support, and that it is therefore an extension of the traditional female caring role; alongside this is the implicit assumption that it is not a skilled activity.77
54.To an extent, this is an understandable and human reaction. Just as there is a natural aversion to thinking about or preparing for old age, there is a general reluctance as a whole in the community to think about when and how social care might be needed. The Centre for Care at the University of Sheffield argued that “there is a lack of public awareness about adult social care” that is born of several factors such as an unwillingness to think about a time where social care is necessary, fear based on negative news stories and stigma related to being in receipt of care.78 The Local Government Association (LGA) pointed to the fact that many people do not know what adult social care is and how it operates; many people do not give much thought to their possible future social care needs; and people deliberately avoid thinking about potentially difficult future circumstances, which is also attributed to the way social care is portrayed by the national media.79 One expert by experience went further, arguing that “‘it is more dangerous than invisibility, I am afraid. I think it is that people think that they know what it is but that it happens to other people.”80
55.People also avoid thinking about future circumstances because there are currently no concrete or quantifiable solutions, and they have no certainty when it comes to the scope or cost of their future needs. There is therefore a widespread misunderstanding about how social care works, who pays for it and how, how it is provided and how to access it. A study by the Health Foundation found that most participants had not thought about their future social care needs and how they might be paid for, explained in part by a lack of awareness and public discussion about social care planning. People often assumed that they had been paying towards their future social care through taxation81 and over a third (38%) incorrectly think that social care services are generally free at the point of need. Moreover, only 5% of people are preparing financially for their future care costs to any great extent.82 Significantly, once participants were given more information about social care, they were clear that the funding model should change.83
The need to know more
56.One recurrent and fundamental cause of invisibility is the consistent lack of data across the whole field of adult social care policy and practice, which inhibits everything from effective intervention to basic understanding of the scale and scope of the service. The Office for Statistics Regulation (OSR) explains this in part by a failure to invest in data and analysis by making it harder for individuals and organisations to make informed decisions.84 Crucially, it also makes introducing evidence-based policy and judging appropriate funding for the sector difficult. We heard from Sir Andrew Dilnot that “collecting data is not a terribly expensive thing to do, but it is a prerequisite of careful understanding and analysis of how we are intervening, what the needs are, and what is working.”85 However, only 40% of social care providers are fully digitised, with the remainder using paper records which frustrates public and political understanding.86 The OSR identified the following gaps in what adult social care data currently measures:
- Delivery of social care outside statutory control. Statistics on social care activity are primarily sourced from data provided by Councils with Adult Social Services Responsibilities (CASSRs). The established assessment criteria mean that many individuals privately funding care or receiving unpaid care from family and friends have little or no contact with a local authority.
- Funding outside statutory control. There are gaps in understanding of the scale of household expenditure on privately funded care and the value of unpaid care. There is no official estimate of the value of unpaid care provided by family and friends, but unofficial estimates that do exist vary between £100 billion and £132 billion per year, far exceeding HM Treasury spending.
- Individual experiences and quality of care. There is little information on pathways and transitions between healthcare and social care. There is also little information on the outcomes for those who experience social care.87
57.An independent report led by Baroness Cavendish of Little Venice also identifies a series of factors that explain the lack of data about adult social care. They include the fact that collecting data is a burden for most stakeholders and there is a lot of duplication; data quality is poor; there are gaps in the data, especially regarding funding flows and outcomes of investment; there is limited information about supply, demand and fees in the social care market; commercial and regulatory concerns mean there is little transparency; data is not shared in a timely way, which limits analysis; and outcomes of social care are hard to measure.88
58.The Health Foundation and Future Care Capital have tried to address this by holding workshops on social care data with people using and providing care across the UK. Participants agreed that the system does not currently collect data about what matters to people who need care. People who draw on care and support and their carers said that data is currently used to restrict their access to care, rather than empower them, and they often could not access data about themselves.89
59.The Government recognises the problem—not least when it comes to making effective and consistent policy—and has sought to address the lack of data in its adult social care White Paper, which sets out proposals for improving data collection and the sharing of data to help better identify unpaid carers.90
Lack of political imperative
60.A result—as well as a cause—of this relatively low profile is that adult social care does not command political attention in the way that the health service does. It is not a national service. It is a mixed economy in terms of provision, dependent on the local authority but often outsourced at local level, market driven, fragmented and diverse in terms of provision. The contrasts with the NHS are stark and the consequences are graphic.
61.First, social care has no powerful national identity.91 The Scottish Government is seeking to remedy this through the National Care Service (Scotland) Bill, which is currently going through the Scottish Parliament. This would establish a National Care Service, to which Scottish Ministers could transfer social care responsibility from local authorities.92 Without commenting on the merits or otherwise of a National Care Service to solve these issues, it is an example of an attempt to create a more visible identity for adult social care. The Scottish National Care Service is further discussed in Chapter 4.
62.This lack of visibility is partly the reason why there is a lack of parity of esteem between adult social care and healthcare. For instance, the Homecare Association noted how in one care home, workers had been allowed to add the NHS logo alongside the care logo on their uniforms. This made a substantial difference to the respect they gained from other professionals and service users.93 Meanwhile, Ministers tend to be more preoccupied with healthcare as the NHS has a higher resonance with the public. As a result, social care is often perceived to be “in the shadow” of the NHS and as an “enabler for a more streamlined healthcare service”.94 The Future Social Care Coalition argued that there was:
“A huge difference between on the one hand the immense national recognition of, and pride in, the NHS—often seen as the single greatest achievement of post war Britain—and the care sector, which is similar in size and is equally important to the wellbeing of the nation, but has none of that sense of being a national treasure.”95
63.Second, the Department of Health and Social Care has no direct influence over the way in which social care budgets are spent, leading to large differences in the provision of social care between local authorities. The NHS and Community Care Act 1990, which followed the ‘Community Care Review’ led by Sir Roy Griffiths in the late 1980s, transferred the responsibility for funding, planning and means testing of community care services from the Department of Social Security to local authorities. The result was the emergence of a market in social care, accelerating as out-sourcing services increased. Funding has traditionally come from central government funding to local authorities, specific grants, business rates, Council Tax and user charges. This has made adult social care extremely exposed in recent years.
64.Reductions in local government spending power since 2010 have led to social care becoming an unsustainable funding burden on local authorities. The Association of Directors of Adult Social Services found that in 2022/23 adult social care accounted for 37.2% of the total local authority budget.96 In 2022/23, the total budget for adult social care is £17.1 billion.97As a result, local authorities seek to cut spending on it each year or subsume it into their spending on other services such as libraries and education. The assumption that local authorities will supplement funding gaps with local taxes such as by raising council tax, the social care precept, and retention of business rates serves to widen existing regional disadvantages given variations in tax bases, notwithstanding the reluctance of local areas to increase council taxes. Funding challenges will be discussed further in Chapter 4.
65.Adult social care is also provided by an unstable market. Most social care services are delivered by independent sector home care and residential care providers, which are mainly for-profit companies but also include some voluntary sector organisations. It is the responsibility of local authorities to commission care from those providers, and therefore to ensure that the local care market is healthy and diverse. In 2021/22 around 17,900 organisations were involved in providing or organising adult social care in England, delivered in an estimated 39,000 establishments.98 In addition, around 70,000 direct payment recipients are estimated to be employing their own staff.99
66.This fragmentation creates massive confusion at every level of the service. As the National Care Forum said: invisibility is “largely caused by how confusing and complicated the system is for everyone involved.”100 This was also highlighted by the National Care, Support and Independent Living Service (NaCSILS), which argued that the fragmentation of the sector means that there is no one central visible entity that addresses most social care concerns.101 Inclusion London said:
“The legal framework is set out by national government, but the support is delivered and funded by local authorities, who make all decisions in individual cases and about the support services in their area. This leads to variations in the individual’s experiences and a very low national profile for social care as opposed to the NHS—a centrally funded system.”102
67.Third, the social care workforce is individualised, unidentified and wrongly judged to be unskilled. The LGA described how the care workforce is often “framed in negative terms, for example, ‘unskilled’, ‘poorly paid’ and ‘suffering from burn out’.”103 Witnesses also said that the social care sector is often portrayed as a sector in crisis, reinforcing demoralisation, with attention given to ‘when things go wrong’ and negative topics such as staffing issues or low pay. While both staffing and pay are indeed dominant issues, made worse during the COVID-19 pandemic, the huge and positive contributions that the sector makes to the community, the economy and to the everyday survival and wellbeing of so many people, are overlooked. Charity United Response said, for example:
“Public perception of the system does not always reflect the positive impact that adult social care can have on young and working aged disabled people, for whom the purpose of social care is to expand their lives so they can have as independent a life as possible.”104
68.Changing the narrative and emphasising the positive, transformational nature of good adult social care, and the flourishing relationships which mark best practice, would make adult social care more visibly appreciated. The narrative around social care needs to be shifted in order to increase its visibility.105 This approach moves beyond formal services, to include the wider network of support that enables overall wellbeing. It is through engagement with these wider support networks that a better vision of social care can be achieved.
COVID-19
69.The COVID-19 pandemic, ironically, while raising the profile and public concern about care home residents who were confined, isolated and vulnerable, and about the difficulties staff faced, compounded the invisibility of the rest of the adult social care sector. One registered provider of social care described this as “a perfect storm and for some there is no way back to safe harbour.”106 However, the pandemic did bring the “chronic underfunding and lack of investment from central government into sharp focus” and “highlighted that there is no parity with the NHS in terms of investment or in the terms and conditions that can be provided to staff.”107 All these factors caused recruitment and cash-flow issues for many care providers.
70.However, if attention was focused on the struggle of care homes to take care of their inhabitants, the pandemic intensified the visibility gap between care home and care at home: while there was extensive news and political coverage of the impact of the pandemic on residents and staff in care homes, there was little on what was happening to those receiving care at home, who lost access to many of the support services and opportunities in the community on which they and their carers relied so heavily.108 The anxieties felt by people having paid carers coming into their homes, and staff potentially going into multiple vulnerable people’s homes, were equally widely not understood or shared with the public.
How invisibility diminishes the service
71.As we discuss in Chapter 3, there are misconceptions and stereotyping surrounding individuals with care needs that directly impact the quality and outcomes of social care services, because they condition the way that social care services are designed. Services are effectively considered sufficient if they meet individuals’ basic needs. There is little thought given to exploring, acknowledging or meeting a person’s ambitions and desires, let alone to helping them find the means to accomplish their goals. This is far removed from the vision of adult social care as a system that enables people to live full, equal, contributory and ultimately ordinary lives. This reflects not just the pressures on the system driven by years of underfunding and the local variations which are so evident; it also means that no matter what age or condition, disabled adults and older people have very few choices and face significant hardships with a fear of what the future might bring. Relationships and trust suffer when everything becomes a costed transaction; when policy deliberately designed as an expansive and innovative future for adult social care, such as the Care Act 2014, is not put into practice; and a shrinking workforce is under significant and increasing strain.
72.There is no doubt that underfunding has led to the rationing of care, restricted choice and a loss of quality of life.
73.Unpaid carers are on the front line in every respect. Every cut in funding affects them directly. As we have already made clear, they inhabit a world in which the social and economic contribution of unpaid carers is taken for granted, regardless of carers’ individual challenges or the choices that people who draw on care might make about who they would like to support them. The great difficulties that affect so many unpaid carers so directly—financial distress, loss of work, lack of recognition, mental and physical exhaustion—are further discussed in Chapters 3 and 7.
74.Second, the quality of care provided is very variable, especially from one locality to the other. The CQC data from October 2021 showed that there was significant regional variation in care quality. For example, several local authorities had 100% of social care services rated ‘Good’ or ‘Outstanding’, while the worst had around 65%.109 We heard that the culture of local authorities and the services on offer differ widely. For instance, Tricia Nicoll, an expert by experience, noted that at one local authority “the director absolutely got it”, whereas in another they had the opposite experience.110 Likewise, another expert by experience, Andy McCabe, expressed anxiety about moving local authorities because he might have to “fight to get the same amount of funding as I get now”, despite having the same needs.111
75.Third, the fact that so much happens and is provided out of sight means that the trust that exists between the public and the NHS is not replicated in terms of social care. This is reflected in the fact that so many experts by experience, both individuals with care needs and unpaid carers, feel that they are ‘battling’ and ‘fighting’ the system at all times. Some described living in constant fear that support might be taken away from them. One expert by experience said that “social workers have a lack of understanding of how the system works” and “don’t understand the hardships we face as unpaid carers or the stress and difficulty of being a parent carer.”112
76.Fourth, attempts to resolve some of the challenges faced by adult social care, such as the Care Act 2014, have not been properly implemented. One expert by experience noted:
“There is a systematic problem with the functioning of the Care Act 2014. There is an invisible world that is only seen by service users… I believe the core problem is that local authorities do not believe in the Care Act 2014, they don’t believe that disabled people can live a fulfilling, independent life and their interpretation and application of the Care Act 2014 is cynical and adversarial.”113
77.Laura Gaudion, Interim Director of Adult Social Care and Housing Needs, Isle of Wight Council, said that the reasons are more complicated. She argued that councils lack “the basic steps that help us to empower that person in the way the legislation intends”, pointing to lack of funding and a skilled workforce “to be able to support people to take control in the way that the Act envisages”, as well as a culture of a “time and task-based care offer” rather than an offer based on individual wellbeing.114 The Care Act 2014 is discussed further in chapter 4.
78.Finally, workforce challenges have never been addressed holistically or in terms of status, pay, qualification, career progression and parity of esteem. A national plan for the adult social care workforce has never been a political priority. The social care workforce is discussed further in Chapter 4.
79.And, while there is so much skill, good practice, compassion and empathy throughout the service, from the top leadership to the paid carer working daily against the clock to engage with and support people drawing on care in the community, this can be lost in the experience of so many people whose daily lives are a constant struggle.
80.Adult social care, with the exception of recent proposals for funding reforms, has been historically relatively invisible in terms of national policy and politics. This is now increasingly damaging to both those who draw on and who provide unpaid care at a time of growing need, rising costs and a shrinking workforce.
81.The consequences are explored in the next few chapters.
67 Carers Trust, ‘Over 90% of adult unpaid carers feel ignored by the Government’ (9 February 2022): https://carers.org/news-and-media/news/post/169-over-90-of-adult-unpaid-carers-feel-ignored-by-the-government [accessed 22 November 2022]
82 The Health Foundation, Public perceptions of health and social care: what the new government should know (September 2022), pp 19, 23: https://www.health.org.uk/publications/reports/public-perceptions-of-health-and-social-care-what-government-should-know [accessed 25 November 2022]
84 Office for Statistics Regulation, Adult Social Care Statistics in England (January 2020) p 3: https://osr.statisticsauthority.gov.uk/wp-content/uploads/2020/01/19_11_15_SocialCare_SRv3.pdf [accessed 29 September 2022]
86 Office for Statistics Regulation, Adult Social Care Statistics in England (January 2020) p 3: https://osr.statisticsauthority.gov.uk/wp-content/uploads/2020/01/19_11_15_SocialCare_SRv3.pdf [accessed 29 September 2022]
87 Ibid., pp 3–4
88 Baroness Cavendish of Little Venice, Social care: Independent report by Baroness Cavendish (February 2022) p 64: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1059888/social-care-reform-Baroness-Cavendish-report.pdf [accessed 22 November 2022]
90 Department of Health and Social Care, People at the Heart of Care: Adult Social Care Reform White Paper, CP 560, December 2021, p 61: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1061870/people-at-the-heart-of-care-asc-reform-accessible-with-correction-slip.pdf [accessed 29 September 2022]
92 The Scottish Parliament, National Care Service (Scotland) Bill (20 June 2022): https://www.parliament.scot/-/media/files/legislation/bills/s6-bills/national-care-service-scotland-bill/introduced/bill-as-introduced.pdf [accessed 30 September 2022]
96 Association of Directors of Adult Social Services, Spring Budget Survey 2022 (19 July 2022) p 9: https://www.adass.org.uk/media/9390/adass-spring-budget-survey-2022-pdf-final-no-embargo.pdf [accessed 29 September 2022]
97 Ibid.
98 Skills for Care, ‘The size and structure of the adult social care sector and workforce in England’: https://www.skillsforcare.org.uk/adult-social-care-workforce-data/Workforce-intelligence/publications/national-information/The-size-and-structure-of-the-adult-social-care-sector-and-workforce-in-England.aspx [accessed 8 September 2022]
99 Skills for Care, Individual employers and the personal assistant workforce (March 2022): https://www.skillsforcare.org.uk/Adult-Social-Care-Workforce-Data/Workforce-intelligence/documents/Individual-employers-and-the-PA-workforce/Individual-employers-and-the-PA-workforce.pdf [accessed 29 September 2022]
107 Ibid.
109 Department of Health and Social Care, Evidence review for Adult Social Care Reform (1 December 2021) p 20: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1037884/evidence-review-for-adult-social-care-reform.pdf [accessed 29 September 2022]