Understanding unpaid carers and their access to support

Unpaid carers play a substantial and vital role in meeting social care needs. The care they provide has enormous value, both for the people they care for and for wider society. Many carers experience great satisfaction from their role, and through the help and support they provide to friends and family members they may also reduce the costs of formal social care provision.

At the same time, caring responsibilities can come at a high personal and financial cost, despite the 2014 Care Act giving carers the right to receive support. 1 in 5 carers report feeling socially isolated and 4 in 10 report financial difficulties because of their caring role.

Access to formal, paid social care is not easy. The adult social care workforce is bigger than the NHS workforce, but 11% of posts are unfilled, and staff experience low pay and difficult work conditions. Since 2010/11 funding for social care has not kept pace with demand and it has become harder to access care.

This means people may go without the care they need, pay more for their care, and/or turn to their family and friends for unpaid care. Increasing pressures in the NHS to discharge patients from hospital could lead to carers supporting relatives and friends with more complex needs, further adding to pressure on unpaid carers.

In this analysis, we explore national data on the number of unpaid carers and trends over time, as well as which groups are more likely to have caring responsibilities and who they provide care for. We give an overview of the types of support available to carers, and what we know – and don’t know – about how many carers are accessing support.

National data, however, are insufficient to help local areas understand the profile and needs of their carer population and to design and target the right support. There are other rich sources of information on local carers, including local administrative records from local authorities and electronic health records held by GP practices. These data sources are far from perfect, and despite ambitions to improve the recording of carer status, this is still generally under-recorded. For this reason, and due to challenges with data sharing and linkages across organisational boundaries, these data sources remain underexplored. The government’s new roadmap for better adult social care data recognises this, and includes plans to improve local data on carer support and to create a new carers survey.

Partner teams within the Networked Data Lab, funded by the Health Foundation, have been working to develop local data sources to explore key unanswered questions. This will include exploring which unpaid carers are known to local primary care and local authority services, how many receive support and how this varies between population groups. Research findings will be published later in 2023.

Estimates of the number of unpaid carers in the UK vary widely, drawing on different data sources, as explained below. The most reliable figures are based on the UK census, which takes place every 10 years (most recently conducted in England, Wales and Northern Ireland in 2021 and in Scotland in 2022). Almost all households complete the census, whereas other surveys usually recruit a smaller sample designed to be representative of the general population.

On the last census day (21 March 2021), 5 million people aged 5 or older were providing unpaid care in England and Wales – 1 in 10 (9%) of the population. In Northern Ireland, it was a slightly higher percentage (12%). While this figure provides a useful snapshot, it is an underestimate of the true impact of caring: other research shows that over the course of their lives, two-thirds of people in the UK will care for a loved one at some point in time, and half of all people will provide care before they turn 50.

The census also revealed that there is large geographical variation in the proportion of people who are carers, with the highest rates in Northern Ireland, Wales and the north of England (Figure 1). Reasons for this variation include differences in demographics, economic opportunities, social relationships and the availability of care services.

Unpaid care was already known to have both a gender and an age gap, and the 2021 census confirmed that carers were more likely to be older – 60% were older than 50, compared with 38% of non-carers – and more likely to be women (60% of carers). However, the census lacks information on the nature of the caring relationship, and on the relationship between caring and people’s wider social and financial circumstances. We therefore used data from Understanding Society, a large, nationally representative, UK-wide household survey.

Our analysis showed that not only are carers themselves a diverse group, but so are their caring relationships. We found that less than half of carers (46%) provided care inside their own household, for example for a partner or child, with the majority of carers (63%) supporting someone living elsewhere, for example parents, other relatives or friends (Figure 4).

Being an unpaid carer can have an impact on people’s ability to pursue paid work. Our analysis of Understanding Society data showed that 4 in 10 carers under retirement age were not working as much as they might otherwise due to their caring responsibilities. This was more frequently the case for carers who care for more hours, such as those caring for a child (6 in 10 working less) or those caring for multiple people (5 in 10 working less).

As a result, being an unpaid carer can have stark financial implications. Among people under retirement age, unpaid carers providing more than 20 hours of care per week were more likely to be living in lower-income households, compared with non-carers or carers providing lower intensity care (Figure 6). Importantly, this is the same group of carers that grew since the 2011 census (Figure 2). Unpaid care prevents some carers from working, and the people they care for may also be less likely to work themselves, having a dual impact on total household income.

Not only does caring often get in the way of paid work, but carers can also face additional costs relating to care equipment or higher fuel costs. A recent survey from Carers UK, covering the period affected by the current cost-of-living crisis, found that a quarter of carers (25%) were cutting back on essentials such as food or heating, almost twice as many as in 2021 (13%).

Various types of support for carers are offered by local and central government in the UK, with the majority being subject to needs- and means-testing (Table 1). An estimated 17% of carers in England were receiving carer’s allowance from the Department for Work and Pensions (DWP) in 2021, and an additional 6% of carers applied but were considered ineligible, often because they were already receiving other state benefits. Similar estimates for Scotland will be available once their census data are released in 2023 (the DWP does not release counts on carer’s allowance claims in Northern Ireland).

The Conservative 2019 general election manifesto pledged to give unpaid carers a legal entitlement to unpaid leave from work although, as of April 2023, this bill has not yet been passed by parliament. In 2022, the Welsh government offered unpaid carers a one-off £500 payment to recognise the essential role they played during the pandemic and to help with the higher caring costs during the cost-of-living crisis.

All carers are legally entitled to receive an assessment of their support needs from their local authority. If a carer is found to have eligible needs, support may be provided to the carer directly (direct support) or to the person they care for (indirect support), as shown in Table 1.

Improvements in recording and data collection could help deliver enormous benefits. With better data, local authorities could identify their most vulnerable unpaid carers, develop a better understanding of what their needs are (and the needs of those they care for) and deliver more targeted support. We recommend that local and national decision makers better utilise their local data sources, to commission services based on their local population’s needs.

Through the Networked Data Lab, the Health Foundation is working to answer two pressing research questions using local datasets:

• How many carers are accessing local authority support, and is access equitable? Despite advances in data collection in social care, we still don’t know how many carers are being indirectly supported by local authorities (through support for the cared-for person) because electronic records do not usually link carers to the cared-for person. We also don’t know if carers in more deprived areas are less able to access support.
• Who is known to local services as a carer, and who isn’t? We know that the use of voluntary markers to identify unpaid carers in electronic records is still underdeveloped, which means that NHS and local authority teams can’t identify and reach out to the carers they have a duty to support.

These two questions are difficult to answer because linkages between NHS data and local authority data require cross-sector working, and personal identifiers such as NHS numbers are not often recorded in non-health data.

Our four local teams in Liverpool and Wirral, Wales, Leeds and north-west London are working with GP records and carer assessment data from local authorities to answer these questions. Unpaid carers can register with their GP and they can also request support from their local authority, who are mandated to conduct carers’ assessments. Both of those activities leave a trail of data which isn’t routinely used for research purposes and will help our analysts build a picture of who unpaid carers are, what health and care services they are accessing and who is – and isn’t – accessing the support they need.

The analytical tools developed to analyse these data will also be packaged for use by other local areas, which should be particularly useful once the new client-level social care data pilot scheme is expanded nationally. Using these novel data linkages, the findings from the Networked Data Lab’s research will be published later in 2023.