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Introduction – adult carers

This guidance is for commissioners, providers and others involved in the planning, shaping and delivery of support for adult carers, primarily in England.

It will be of interest to commissioners within local authorities (including public health), integrated care systems (ICSs), NHS trusts and mental health trusts. It will also be of interest to a wide range of providers – including those from the voluntary, community, private and public sectors, not just those already providing carers’ breaks.

It will help in meeting legal duties, especially the Care Act 2014, regulatory requirements, and ensure alignment with policy (England).

Most importantly, its aim is to improve outcomes and practice, promote innovation and remove some of the barriers carers face in meeting their needs for a break from caring.

Carers play a vital role in society. More people are becoming carers as the population ages and people develop health and care needs. We need to support carers to continue caring if that is what they want. That support must promote their wellbeing and prevent their physical and mental health deteriorating. Caring is built on relationships, so although this guidance is about carers’ breaks, it is essential that breaks offer a positive experience for the person who is cared-for as well.

The guidance was first developed as part of the government’s Carers action plan 2018-2020 and was again updated during 2022-2023. A reference group of carers, people with care and support needs, commissioners and providers has guided its development. It is informed by a detailed literature review, a call-out for practice examples, analysis of evidence and feedback from carers responding to a Carers UK survey. This guidance also aligns with supporting you to take a break (Carers UK, 2019).

A break is not about carers having time off to manage essentials such as attending their own health care appointments. GP appointments are a fundamental right – not a break.

Carers’ Breaks Reference Group discussion, February 2019

Dame Philippa Russell, Chair of reference group, carer and Vice President, Carers UK

Definition of a carer

A carer is anyone who spends time looking after or helping a friend, family member or neighbour who, because of their health and care needs, would find it difficult to cope without this help. This guidance focuses on adult carers who are caring for an adult. While this guide does include young carers as they themselves reach adulthood (16–24 years), this group are additionally included in carers’ breaks for young carers and young adult carers. Carers are from all walks of life and of all identities. The people they care for are similarly from all backgrounds and have a wide range of needs. Carers may not always be visible, they may not identify as a carer, or they may not be known to services. A carer may be caring for more than one person and may also have child-care responsibilities.

Breaks should be personalised and add value and quality for both the carer and the person they care for.

Carers’ Breaks Reference Group discussion, February 2019

Carers’ breaks: definition and importance

There is no one size fits all – either for carers or for the people they care for. Carers need a wide range of breaks options to meet their needs effectively. Carers and the members of the reference group were clear that we need to assume some basics – support so that a carer can attend health care appointments or deal with an emergency is fundamental and should not be seen as a break. Also, the chance to sleep is not a break! These aspects of caring should be part of the core support available.

A break is something that carers want to use for themselves. It should be planned, meaningful and positive. The arrangements need to work for both the carer and the person they care for in order to be beneficial and improve carer wellbeing.

The term ‘respite’ is often equated with residential breaks and can be viewed quite narrowly. The guidance uses the term ‘carers’ breaks’ to encourage a more innovative approach by commissioners and to engage a wider range of potential providers.

Carers view breaks as essential in helping them to continue a caring role and to maintain their own health and wellbeing. They value breaks for a wide range of reasons – practical, emotional, social and psychological. Being able to take time away from the pressures of a caring role is one of the most frequently-voiced carer demands. Breaks are vital to maintaining relationships with many carers using breaks to spend time with family and friends. NICE (2020) recommends that carers’ breaks should “meet carers’ needs for a break, for example in duration, timing, frequency and type of break” and “be arranged in a way that provides reliable and consistent support to the carer (such as avoiding last-minute changes that could lead to additional stress for the carer)”. Despite this, access to breaks can be difficult and many carers just don’t get the breaks they need.

The following data is taken from Carers UK 2022 State of Caring survey.

  • 61 per cent of carers said that they were uncertain about what practical support they might be able to access in the next 12 months.
  • 41 per cent of carers stated they haven’t taken a break in the last 12 months. Of those, 8 per cent said they tried to take a break but had not been able to. 26 per cent mentioned it was too difficult to take a break.
  • 17 per cent of carers had taken a break but this was not enough for them to look after their mental or physical health.
  • 45 per cent of carers stated they have been less active in the last six months due to increased anxiety and stress due to the cost of living crisis.
  • 11 per cent of carers state they have access to appropriate support that suits their needs, including respite care and carers breaks, whilst 65 per cent do not.
  • 51 per cent of carers said that being able to take a break would help them feel less lonely.
  • The amount of care being provided by an individual affected how likely it was that they had taken a break. 69 per cent of people caring for less than 35 hours a week had taken a break compared with 56 per cent of people caring for over 35 hours a week.
  • Carers who were gay, lesbian or bisexual were less likely to have taken a break than heterosexual carers (53 per cent vs 60 per cent).
  • Carers with an income of less than £1,000 a month were more likely to say they hadn’t taken a break because they think it is too difficult than carers with an income of over £1,000 (24 per cent vs 36 per cent).

Carers clearly need better access to good breaks. Carers have great ideas and know what is important to them. Many providers deliver great services; others want to adjust their offer to really respond to what’s needed. Many local businesses want to play a positive role in their communities. Co-production with carers (and the people they care for), collaboration with providers, commissioners and wider partners are all key to the development of relevant, personalised and accessible breaks.

Please use the tips and examples in this guidance to ensure your local carers get the support they want and need.

We should collect and use data and information from assessments – from carers and people who use services.

Carers’ Breaks Reference Group discussion, February 2019