In April, the House of Lords Adult Social Care Committee published a call for evidence into three ‘key issues’ related to social care: the invisibility of care provision; support for carers; and co-production. The investigation is part of their inquiry Lifting the veil: Removing the invisibility of adult social care. At the Centre for Care, we submitted a response to the inquiry, drawing on consultations with care workers, charity representatives, unpaid carers, and users of social care services within Sheffield. This commentary focuses on a session held as part of a consultation with Sheffield and District African Caribbean Community Association (SADACCA). SADACCA was formed in 1955, and provides a socially inclusive community hub with services such as domiciliary care, adult day care, and learning support, alongside sports, arts, and music initiatives. As its mission, it promotes and establishes support for marginalised communities throughout Sheffield. Around twenty individuals from SADACCA attended the event – more than we had expected – including unpaid family carers, nurses, care workers, social workers, community leaders, and individuals using care services. The discussion among these attendees ‘lifted the veil’ on how (and why) the invisibility of care is produced, how invisibility relates to socio-economic and cultural background, and how experiences of individuals navigating the social care sector are shaped by racialised norms and racist assumptions.
In what ways is social care ‘invisible’?
The discussion began with a consensus that social care is invisible – an unpaid carer said that invisibility is a ‘cloak worn by [both] carers and community.’ Attendees felt that while the general public would have an awareness of what, say, nursing involves, they would have difficulty describing the role of a care worker. The social care system is not afforded the same level of societal affection (or the same level of funding) as the NHS. Within this system, care workers are unappreciated. Attendees identified two dimensions of this lack of appreciation: low pay, and neglect of training. A social worker at the event described situations where ‘someone comes off the street with training done over the phone and into someone’s home.’ Paid provision of care was also viewed as overly focussed on discrete tasks, such as giving somebody their medication, and constrained by short time slots. This impacts quality of care, with workers unable to engage in more ‘informal’ aspects of care or unable to carry out any additional unplanned tasks. The organisation of care work also, attendees said, means that ‘the carer needs care’ as their mental and physical health is negatively impacted. Factors of overwork, underpay and insufficient training often combine into a ‘rubbish service.’ This was viewed as inevitable: ‘when they give a rubbish service, we complain, but what do you expect?’
Attendees also emphasised that invisibility is produced. As a human need or an activity, social care is not inherently ‘invisible’ – it is caused to be invisible. Policy choices and organisational barriers work to obscure both the labour of care and the experiences of individuals receiving care services and their family members. They also said that invisibility serves a purpose, as it allows for the continuation of poorly funded services, with a low paid workforce and an overreliance on unpaid caregiving. Unpaid carers typically care for family members or friends, and often do not identify as ‘carers.’ This increases their invisibility to social services (and to society more broadly) as they are less likely to access assistance or utilise funding. Relevant information about what services and funding might be available – either for carers or for individuals looking for care – can also be difficult to locate. If people are not signposted to the Carers Allowance, or to charities, groups, or services provided by local authorities, then they remain invisible. Yet attendees emphasised that signposting is not enough: they described being passed between different organisations rather than being supported in any meaningful way. A community leader concluded: ‘I hate the term signposting, everyone is signposting [but] I don’t know who’s doing hands-on work.’ Another attendee said, ‘if you get a good GP its fine, they make referrals; but a bad one and you get a leaflet.’ This reliance on the compassion or professional competence of individual GPs was viewed by attendees as unsustainable, as it left quality of care down to ‘the luck of the draw.’
How do structural inequalities shape the invisibility of care?
SADACCA’s role as a ‘socially inclusive space that caters to the needs of people from the African Caribbean communities’ meant that attendees were able to shed light on how the production of invisibility is a racialised process. Attendees held the view that invisible care labour was primarily carried out ‘on the backs of women’, and that Black carers and users of care services were more likely to say, ‘I can cope, I’m strong’ rather than asking for help. One attendee made the connection with white working-class communities, who she felt also tend to hold in concerns or needs around care until they ‘explode’, and only at that point do they seek assistance from social services. While this view reiterates a general (politicised) trope associating being working class with being white, it does also indicate how the psychological burden of racialised norms could sharpen existing inequalities related to class. In a sense then, the variations in which individuals are ‘invisible’ relate to socio-economic and cultural norms. Attendees’ views suggested that norms of ‘coping’ are also, though, shaped by broader societal expectations and by attitudes of individuals working within public services. An attendee commented that people who speak ‘a certain way’, or who are deemed to be angry or have aggressive body language, ‘do not get the quality of service.’ In this way, unspoken codes and criteria – which attendees indicated could be underlined by racist assumptions and expectations – affect access to care and care quality
The discussion highlighted other factors related to race which increase invisibility. An attendee who carried out advocacy work around health and social care connected the treatment of carers to neglect of the Windrush generation. Many of those who migrated from the Caribbean to the UK between 1948 and 1971 took up work in nursing and care. When these individuals needed care themselves, they came up against a fragmented and seemingly inaccessible system. Attendees also emphasised that social services can be inflexible when it comes to socio-cultural backgrounds. As an example, one attendee recounted his mother using a dementia service which failed to provide types of food that she was used to – the service had no Black staff or other Black users. He also connected the neglect of Black individuals within care services to changes in Sheffield: previously, Black communities had consolidated within three or four areas of the city, but these communities are now dispersed and their needs have become more likely to be disregarded within social care provision.
It is necessary then to unpack the various ‘barriers of invisibility’ referenced in the call for evidence and to consider the role of race, gender, and class background. These factors are often neglected in policy publications. The recent ‘People at the Heart of Care’ White Paper does note that the careers of women are disproportionately impacted by care duties, and states that: ‘[p]eople are at the heart of our vision for adult social care. No matter where they live, their age, race, culture, religious beliefs, sex, sexual orientation, gender identity, disability, housing status or their personal circumstances.’ It is unclear, however, how (or whether) the government’s strategy will provide any support for minoritised groups. In a section focused on the care workforce, the white paper notes an intention to roll out the Skills for Care ‘Social Care Workforce Race Equality Standard’ so that local authorities will use data to treat staff of minoritised backgrounds equally and in a ‘culturally appropriate’ manner. Given that this is primarily a measurement tool, it would need to be proceeded by other actions to have an impact. Alongside tackling discrimination, these actions could include increasing Carers Allowance and the National Living Wage (and reconsidering what counts as ‘working time’), and regulating use of precarious contracts. These actions do not explicitly support racially minoritised groups, but they would support a workforce where these groups are overrepresented.
Can ‘just another meeting’ become meaningful action?
By the end of the session attendees were problematising the perception that care is invisible by arguing that at some levels there is already an awareness of the issues that the sector face. Firstly, it is not invisible to the families, neighbours, and communities of carers or individuals receiving care, or the churches, charities, and public services supporting those individuals. Secondly, it is not invisible to the government: attendees emphasised that the House of Lords are already aware of problems within the sector and already know what the answers are (for example, they have previously published a report on the ‘scandal’ of social care funding). Attendees then commented on the reluctance on behalf of government bodies to acknowledge that social care is under-resourced. Instead, the narrative pushed is that increased regulation of care providers is necessary, or that local authorities and care providers just need to use resources in a more business-savvy way.
It also seemed that many of the participants in the session had described their experiences and given their views in similar consultation contexts before. Multiple people asked what the outcome of the discussion would be, whether it would end up as ‘just another meeting’, and what the ‘end game’ was. The hope is that consultations carried out as part of a contribution to an inquiry such as this will increase pressure on whichever agents are able to implement positive change. This intention was expressed by an unpaid carer (and former nurse): ‘all we can do is keep dripping water to fill up the basin.’ The same attendee went on to suggest the limits of this gradualist approach, with another water-related metaphor: ‘the reality is it’s the state who hold the resources, we are all drops in the ocean.’
A call for evidence is positive in that it implies some willingness to listen, yet the frustrations involved for individuals repeatedly giving responses should not be overlooked. Attendees described the suffering and death of loved ones; they relived the ‘fight’ that they had gone through to lessen that suffering by providing care themselves or by navigating complex systems to access paid care provision. Woven through their accounts were experiences of racism. For example, one attendee expressed frustration with the attitude that Black people should go back to ‘where they came from.’ For him, he said, that would entail returning to a different borough of Sheffield. The number of these largely negative accounts appeared so unlimited that we were told that we should come back the next week. We would like to speak to the attendees again (and to the other groups which we consulted as part of our response); these forms of collaboration are essential to our research practice at the Centre for Care. We would also, though, like to ensure that our research is not a burden for collaborators and that their experiences – which they have put in effort to recount – provoke policies challenging structural and systemic barriers in the care sector.
About the author
In her role at the Centre for Care, Grace will be working with Dr Kate Hamblin to examine the effects of technology changes on paid and unpaid care provision. The research will consider whether, and in what circumstances, digitalisation has positive or negative consequences for stakeholders. It will focus on inequalities of technology implementation, the impact of fragmentation and financialisation, and the nature of the labour process.