Learning Disabilities & Autism Opinion

Learning to Care: The Forgotten Frontline

Rashmi Becker

Rashmi has recently completed her PhD at the School of Clinical Medicine, University of Cambridge, where her research focused on the role of frontline care workers in delivering government policy. She previously held senior positions in national learning disability and autism charities.

I was completing my PhD examining the role of learning disability care workers in delivering government policy, when the Covid-19 pandemic became a reality for the U.K. While we were told to ‘Protect the NHS’, there was no mention of our social care workforce or those they care for.

As the impact of the virus on the social care sector eventually became public, much media reporting followed. But the issue is not new: for more than 20 years concerns have been raised about the system of publicly funded social care in England. In 2014, The Kingsmill Review, an independent review of working conditions in the social care sector, observed that ‘Care work is in crisis… The low status of care work and poor treatment of workers has led to a vicious downward spiral into one of the most difficult sectors for workers, with widespread exploitation’. Just last year, the Association of Directors of Adults Social Services Budget Survey found that: ‘Local government is struggling to balance the books and Directors know that adults of all ages with disabilities are not getting all the care they need. Directors are increasingly saying they can’t meet their legal responsibilities to the public’.

While consecutive governments have produced policies that advocate the independence and wellbeing of people in receipt of social care services, the wellbeing of the frontline carers that play a critical role in enacting these policies has been neglected. The fragmented care sector is characterised by staffing shortages, poor pay, and low status. In 2019, Skills for Care reported that the workforce vacancy rate in adult social care in England was 122,000; the average rate of staff turnover was 30.8%; 24% of the workforce was employed on zero-hour contracts; and the average pay for care workers was £8.10 per hour. Unlike the NHS, the social care sector does not have national pay rates and terms and conditions.

Tackling the social care crisis requires policymakers to address the poor conditions under which frontline workers operate. When the care workforce is addressed in policy, the focus is disproportionately on regulation, training and managing risk. The care worker role is a complex combination of  manual labour (such as the provision of intimate personal care) and highly skilled professional work, including advocacy and enablement. Supporting the needs of individuals who may have severe physical and mental impairments, and lack mental capacity, requires care workers to know the people they support well, to interpret subtle non-verbal communication, to promote potential, and to safeguard wellbeing. This requires emotional intelligence that is grounded in consistent and meaningful interactions between care workers and those they support.

The longstanding underfunding of social care and the low status of care work belies an ingrained, inherently negative attitude towards those who are dependent in society. Existing policy stigmatises dependency by idealising independence and self-determination as the markers of a meaningful life. Policy is rooted in the view that disabled people can be valued members of society only when they adopt the roles and behaviours of the ‘mainstream’, non-disabled group. But what happens if they do not or cannot adhere to social norms? Given the history and negative public profile of social care and the treatment of disabled people, it could be argued that the efforts to promote independence is a well-intentioned bulwark against outdated authoritarian, paternalistic practice. But the promotion of independence should not be to the detriment of those who have dependencies.

The long-overdue reform of social care must address the gap between policy and practice; central to this is the treatment of frontline workers. The material and mental health of care workers is fundamental to ensuring quality of care and quality of life for those they support. Care workers and those they support have been an afterthought in the current pandemic – the consequences of which are yet to be fully appreciated. But this has also created new impetus for change, and to recalibrate our appreciation of the forgotten frontline.

 

This article draws on research funded by the National Institute of Health Research (NIHR) Collaborations for Leadership in Applied Health Research and Care (CLAHRC) East of England programme, at Cambridgeshire and Peterborough NHS Foundation Trust. The views expressed are those of the author, and not necessarily of the NHS, NIHR, or Department of Health and Social Care.

 

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