Shifting responsibilities: who cares?

In his first speech as Prime Minister, Boris Johnson made clear his intention to fix the crisis in social care “once and for all”. While we have been eager to hear politicians’ plans on how they might transform the social care system, it is vital to also recognise the challenges that carers themselves are facing.

The recently published Survey of Adult Carers in England is a biennial publication that captures 50,000 unpaid carers’ experiences, describing the support they receive from local services and the impact their responsibilities has on their everyday lives.

There were some compelling findings from our previous analysis of this survey, but what is the picture two years on?

Carers are busier

A notable finding is carers reporting an increase in their workload – particularly for personal care, taking the person they care for out, and giving them medication.

Over one-third of carers spend well over half of their time (day and night) caring for a family or friend – which is an increase of around 1,500 carers from the previous survey – so it is to be expected they are taking on more responsibilities as a result.

Carers and people with social care needs are not using local services

There have been decreases in the proportion of cared-for people making use of social care services, which is also adding to the burden on unpaid carers. The biggest drops include approximately 1,000 fewer users receiving equipment or adaptations for their home (including wheelchairs and handrails), and around 700 fewer users getting home care. This is unlikely to be due to reduced demand, with NHS Digital citing a rise in the number of requests for social care support in recent years.

To add insult to injury, most support for informal carers (such as respite care) appears as scarce as ever, with the use of these services also falling.

Why is it happening?

As the recent Getting Carers Connected report revealed, there are now potentially up to 8.8 million people in the UK providing informal care to a family member or a friend – more carers than ever before.

Although it is difficult to know the exact number of informal carers at a given time, that figure is startlingly close to Carers UK’s estimate of 9 million carers in the UK by 2037 – which is still nearly 20 years away. If the current direction continues, the actual figure by 2037 is likely to be much higher.

The squeezing of local authority budgets has also had an impact. The proportion of carers reporting financial difficulties – caused by their caring responsibilities – has increased since the last survey. This perhaps isn’t surprising when the only notable recent increases in support from councils (according to social care activity data from NHS Digital) are in the supply of information and advice, rather than financial support that might actually more address their immediate needs.

And while signposting to other services can be helpful, there is no guarantee of receiving the benefits. As of August last year, 1.3 million carers had made a claim and were eligible for the carer’s allowance, but only a third of them were receiving any money.

Whatever money that does exist clearly does not seem to be trickling through to the carers who need it. For instance, funding has been earmarked recently for the provision of carers’ breaks (as well as a grant to help service users pay for home adaptations), but the amount that local authorities contribute varies considerably. This means where you live can dictate the amount of support available – a so-called “postcode lottery” that isn’t a marker of a fair system.

What’s the impact?

More than 5,000 carers (over 10% of all respondents) now report having a lot of financial difficulties due to their caring responsibilities, which is an increase from the last survey.

Worryingly, an increasing proportion of carers also report that their own health has deteriorated because of their caring role (see chart). This backs up recent QualityWatch commentary, which highlighted a significant drop in carers’ quality of life across all six of the domains of quality of life (occupation, control, personal care, safety, social participation, and encouragement and support).

These results are undeniably concerning. Carers are helping those most in need of support, but doing so to the detriment of their own health and wellbeing. If their health deteriorates further, such that they can no longer care for others, who can we rely on then?

The value of informal care is estimated to be worth £100 billion a year – a gap the government would surely find impossible to plug if these indispensable carers were to suddenly remove their support.

What might help?

Services have to meet carers’ needs, and it would help if the financial support available for carers was more transparent – making it clear to them what they are eligible for, and to make access to support consistent across the country.

That carers take breaks is also essential in preventing burnout. This could be supported by introducing the right to take paid leave from work (if the carer is employed) due to the demands of their caring role, with appropriate support networks in place when they return to work.

This could be complemented by local authorities increasing the number of personal budgets available (money to help with carers’ health and wellbeing) and giving carers the autonomy to choose their preferred version of respite, while clearly also taking on board the preferred respite option for the cared-for person.

For too long the government has relied on the kindness and selflessness of unpaid carers. It must now deliver on its policy promises to support informal care – and show more of the compassion and commitment so readily shown by carers.

*This blog compares the findings of the recently published 2018/19 Survey of Adult Carers in England and the previous 2016/17 survey. Please note there were 49,750 total respondents in 2018/19, compared to a total of 54,315 in 2016/17. Any approximate numbers shown are the result of scaling down the 2016/17 sample accordingly, thus enabling comparison between both sets of results.