Informal carers

The Department of Health and Social Care (DHSC) has described an informal/unpaid carer (PDF) as: “…someone who provides unpaid help to a friend or family member needing support, perhaps due to illness, older age, disability, a mental health condition or an addiction”, as long as they are not employed to do so.

How many informal carers are there?

The Family Resources Survey estimated that in 2021/22 around 7% of the UK population (4.9 million people) were providing informal care. The survey defines informal caring as care that is not a paid job, and can occur for many, or only a few, hours a week. In each year since 2009/10, around 60% of informal carers are women.

In terms of young carers, census data from the 2021 census for England and Wales and the 2021 census for Northern Ireland provides some information. In Scotland, the census was delayed to 2022 and it is due to be published by the end of 2023. Available census data shows the number of carers aged 24 or younger in England and Wales, and aged 15 years or under in Northern Ireland. The 2021 census found there were:

• 334,300 carers aged 24 or younger in England;
• 22,600 carers aged 24 or younger in Wales; and
• 2,600 carers aged 15 or younger in Northern Ireland.

A 2013 report from the Children’s Society (PDF) found young carers were 1.5 times more likely than their peers to be from Black, Asian or minority ethnic groups.

The total number of people providing unpaid care has fallen between the 2011 census and the 2021 census, by around 2% in England and Wales and around 0.5% in Northern Ireland. Most of this change is explained by fewer people providing 0 to 19 hours of care per week.

The NHS has acknowledged the “vital contribution” of carers, saying it was “critical and underappreciated … not only to loved ones, neighbours and friends, but to the very sustainability of the NHS in England”.

What employment rights do carers have?

The Carer’s Leave Act 2023 requires the Secretary of State to create a new entitlement for employees to take at least one week per year of unpaid leave to care for any dependents with a long-term care need. The Act received Royal Assent on 24 May 2023, but it may take some time for the new regulations to be created to implement the new right to carer’s leave.

Employees already have the right to reasonable unpaid time off if a dependant is ill or injured or if their care arrangements are disrupted.

Carers, like other employees, also have the right to request flexible working from their employers. Employers must consider these requests and can only refuse them for one of a list of statutory reasons.

Carers may also be protected from discrimination or harassment “by association” while at work. Discrimination by association is when a person is treated less favourably because of their association with another person who has a protected characteristic, such as age or disability.

What benefits are carers entitled to?

Carers are entitled to a range of benefits, but the main cash benefits are Carer’s Allowance and the carer premium, which is an extra amount added to means-tested benefits such as Income Support, Pension Credit and Housing Benefit. Universal Credit, which is replacing means-tested benefits for people of working age, also includes a carer element.

Recipients of Carer’s Allowance must not be in full-time education or have earnings of more than £139 per week after deductions. These rules can create problems, forcing people to choose between caring or continuing in paid work or education.

In November 2022, there were 1.4 million Carer’s Allowance claimants in Great Britain. Women made up 69% of the total.

Is there support for carers in education?

If the carer is in school, they might have access to counselling. In England, they might also be eligible for additional Pupil Premium funding, which goes directly to their schools if they are, or have been, entitled to free school meals.

In further education, students in England with caring responsibilities might be able to access discretionary bursary support for people aged 16 to 19. However, they can’t claim Carer’s Allowance.

A carer in higher education can access additional student support funding if the adult they care for qualifies.

Is there other local authority support?

Carers are entitled to a statutory assessment of their support needs, undertaken by the local authority. The assessment must consider factors such as what assistance the carer needs to continue providing care, their independent needs, and, for young people, whether it is appropriate for them to provide care. 

Where a carer’s support needs meet prescribed national eligibility criteria, set out in the Care and Support (Eligibility Criteria) Regulations 2015, the local authority has a duty to meet those needs (subject to some other conditions).

Even when the criteria are not met, local authorities have discretionary powers to provide support. Young carers do not need to meet national eligibility criteria and local authorities must only consider their assessment in deciding whether to provide support.

Is there NHS support for carers?

The Carers Action Plan 2018–2020 included a commitment for NHS England and the Care Quality Commission to work together in developing standards for GP surgeries. These should be used to show how effective they are in identifying and supporting carers. The NHS Long Term Plan of January 2019 repeated a commitment to improve how the NHS identifies unpaid carers, and to better address their health needs.

Proposed reforms to social care

In September 2021, the Government set out plans to reform how people pay for adult social care in England. The proposals include the introduction from October 2023 of an £86,000 cap on the amount anyone will have to pay towards their personal care over their lifetime. The means test for accessing local authority funding support will also be made more generous.

On 1 December 2021, the Government published a White Paper on wider adult social care reform: People at the Heart of Care. The White Paper set out a range of policies aimed at “empowering unpaid carers”. Specific commitments included:

• £25 million to work with the sector to “kick start a change in the services provided to support unpaid carers.”
• A new duty on Integrated Care Boards to involve carers when exercising their commissioning functions.
• Amending the school census to include young carers.
• Increasing the voluntary use of markers that identify unpaid carers in NHS electronic health records.