As the Government dithers over implementing the social care funding changes recommended in the Dilnot report, much of the focus on social care in politics and the media has been on the funding and quality crisis in formal and institutional care.
However this debate risks obscuring the experiences of informal carers – 12% of the population in 2009/10 – and the devastating effect care can have without proper support
Caring is a financial leveller. Almost every carer I spoke to as part of my research had faced financial pressures as a result of caring and/or due to someone in the family experiencing long-term illness or disability. Very few had sufficient wealth to protect their lifestyle, or employers flexible enough to support them to continue to work and care long term. This has financial effects that are dramatic at the time of caring, but which can last far beyond the period of care.
The costs are multiple. Some are associated with disability and ill health: extra heating, transport to visit the care recipient, or to go to appointments. Special diets, equipment, extra washing, incontinence pads. For those who were getting older, or caring for someone with a long-term condition the threat of residential care loomed large on the horizon. This can feel an impossible problem, and is poorly understood. Carers simply cannot plan towards it. Those caring for children unlikely ever to be able to look after themselves worry about what would happen to their children when they were gone.
And there’s the opportunity cost, lost earnings, doubled if your spouse also has to stop work to care, or is unable to work due to their own ill health. 26% of all working-age carers report having to change their work patterns, although this rose to 40% amongst those providing more than 20 hours of care a week. Some stop work completely, others reduce their hours, with long-lasting effects on their careers.
Carers spoke of inflexible employers, even in the public sector. Many felt unable to do their job well because it required travelling that would have put the person they were supporting at risk, or they had to leave to deal with emergencies, or make frequent phone calls. Those caring for children found it hard to find work within school or nursery hours. The battle to get appropriate formal support was often a further barrier to work.
As local authority care is further rationed, cut, or privatised, there will be greater pressure on family carers to step in. Few carers feel they have a choice to care: it’s a situation they find themselves in, because they love the care recipient, or feel obliged, because there is no-one else.
This then leaves them with even less choice and control over working and their finances. If employment rights are further reduced by the Conservatives, carers will be left even more vulnerable.
Securing social care funding should be the starting point. We must consider how we can best support carers. How do we ensure people are given a choice between caring and working? How can we provide high quality, affordable alternatives? Access to education and training? Comprehensive information and advice to help carers navigate the complexities of the welfare state at a time of high stress? Access to mental health support?
These are complex and urgent questions, and faced with a rapidly ageing population, we can’t afford to delay seeking answers any longer.
Caring is not something that happens to ‘other people’, something that can be planned for, or predicted. It is something that can happen to any of us, at any time, and we need to place it at the centre of social policy if we want to ensure that it does not have catastrophic effects on families’ lives.
Sarah Hutchinson is a member of the Fabian Women’s Network