“It is frequently forgotten or, perhaps worse, taken for granted that the majority of care provided doesn’t come from the NHS or from care homes. It comes in the form of unpaid care that relatives, friends and neighbours provide – estimated to be worth £132 billion a year.”
State of caring report (2018), Carers UK
It is undeniable that the value of the care provided by informal carers is huge. Successive governments have set out strategies to support this unpaid care from relatives, friends and neighbours, in recognition of the vital part they play in supporting the social care system. But the reliance on them appears to be increasing, with reductions in local authorities’ budgets meaning that fewer people are getting formal support.
So it’s more important than ever to find out how those carers are feeling. The national carers’ survey, designed to help the adult social care sector understand more about how services are affecting lives, provides some telling answers.
Drop in satisfaction
The survey covers over 50,000 carers, and takes place every two years, aiming to find out whether services are helping carers. It looks at the services that carers receive themselves (such as advice and information), as well as what’s available for the cared-for person – such as home help or respite care, which is temporary care that means the usual carer can take a break.
The latest survey shows that carers’ satisfaction has declined steadily in the last five years. The proportion either extremely or very satisfied with the support and services they receive had already fallen from 43% in 2012/13 to 41% in 2014/15, and dropped further to 39% in 2016/17. Although the drop may seem small, carers’ satisfaction in survey terms was already very low.
The reasons given for such low satisfaction make dismal reading: having no encouragement and support, being worried about personal safety, self-neglect, not having enough time to care, and feeling socially isolated (see the next chart).
The impact of all this cannot be underestimated, with the detrimental impact of caring on the health of carers well documented – both on their physical health and through the impact of social isolation.
Carers are often the ‘golden thread’ that ensure services are joined up for individuals who may be receiving services from multiple sources – often coordinating care for the service user.
So it is particularly striking that a significant proportion of carers have had a poor experience when it comes to being involved and consulted in decisions about care – only two-fifths of carers always feel involved and consulted, with satisfaction declining since 2012/13 (see the next chart).
So what support and services do carers value?
Financial help and the ability to work make a difference. Carers with financial difficulties (due to their caring work) are nearly four times more likely to be dissatisfied than those without such worries (30% compared to 8%). Those who have been supported to stay in employment, and who have their employers’ backing when it comes to their caring responsibilities, are more likely to be happy.
More care also helps, particularly when it enables them to take a break at short notice or in an emergency. Other sorts of support, such as access to longer breaks, home help and meals on wheels, also enhance satisfaction. So it is worrying that there has been a 10% drop in the number of carers who receive respite care – from 57,440 in 2015/16 to 51,980 in 2016/17.
Finally, support groups and advice and information services also play their part – carers with access to them are more satisfied – but the quality of advice and information is important. 72% of respondents found it easy and helpful to obtain information and advice (and were in turn very or extremely satisfied), compared to only 12% who found the information difficult to find and 8% who thought it was unhelpful.
Lessons to learn
This all paints a gloomy picture of many people struggling with financial difficulties, limited encouragement and support, lacking in useful information and advice, and not feeling involved and consulted when it comes to key decisions. And despite commitments from the 2014 Care Act, the situation for carers has deteriorated in recent years.
The forthcoming green paper on social care funding for older people, and any similar plans for funding care for working-age adults, needs to show the value of care provided by informal carers. The vast work that they do, combined with how unsupported many of them feel, represents a huge area for improvement.
We know from other health systems that plans for a redesigned social care system need to accurately assess levels of need. Current estimates of future costs focus on formal care services – the potential impact of contributions towards informal care also need to be taken on board.
And whatever future funding mechanisms are developed for social care, informal carers will still play a central role. Better recognition and support for them, and ensuring they are fully involved in decisions about care, will be critical.
Scobie S (2018) "Unpaid carers: informal yet integral", Nuffield Trust comment. https://www.nuffieldtrust.org.uk/news-item/unpaid-carers-informal-yet-integral