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), clinical commissioning groups (CCGs), 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.

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

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.

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

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 developed as part of the government’s Carers action plan 2018–2020. 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).

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 as well as young carers as they themselves reach adulthood (16–24 years). 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. 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  ‘Carers’ breaks’ survey 2018/19

  • 46 per cent of carers said they had not been able to take a break from caring in the last five years (and would have liked a break)
  • Only 8 per cent of carers said they had been able to take sufficient breaks in the last five years. A further 8 per cent reported that they had not wanted or needed a break
  • 69 per cent of carers felt that their health and wellbeing improved as result of being able to take a break (a further 26 per cent did not feel it had any impact)
  • For those reporting a negative impact of the break (under 5 per cent), reasons included issues about the quality of care during the break, the person’s health deteriorating and the stress of returning to the daily routine of caring
  • The most common reasons for not being able to take a break were the person they care for not being willing to accept care and support from others, the costs of paying for a break, and not being able to afford to doing anything during the break
  • Other reasons for not taking a break included lack of information, lack of availability and concerns about the quality of support.

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.

Commissioners, be brave.

Carers’ Breaks Reference Group discussion, February 2019

Carers’ breaks: guidance for commissioners and providers
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