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.
It will help in meeting legal duties, especially the Care Act 2014 regulatory requirements, and ensure alignment with policy (England).
Most importantly, the aim is to improve outcomes and practice, promote innovation and remove some of the barriers carers face in meeting their own needs.
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 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 a resource for carers developed by Carers UK. The Carers UK resource will be published in April.
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 (mainly) 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 may 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.
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 options to effectively meet their needs. Carers and the reference group for this guidance were clear that we need to assume some basics – support so that a carer can access 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 cared-for person in order to be beneficial and improve carer wellbeing.
The term ‘respite’ is often equated with residential respite 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. 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 the Carers UK State of caring report and Carers’ breaks survey 2018:
- 25 per cent of carers said they hadn’t had a day off from caring for more than five years
- 40 per cent of carers said they hadn’t had a day off for more than a year
- carers who reported not having had a break from caring within the last year were also more likely to report having suffered mental ill health as a result of caring or that their physical health had worsened as a result of caring
- for those struggling to get a break from caring, the most common reasons for failure were the costs of paying for or contributing to the cost of a break, or that the person they care for isn’t willing to accept care and support from others
- 33 per cent of carers who had a carer’s assessment in the last year stated that their need to have regular breaks from caring was not considered in their assessment.
These trends need to be reversed. 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 of 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