I wouldn’t say that my caring role impacts my life; I would say that it is my life.
Ollie Mallin, Welsh Youth parliament member and young carer (Carers Trust 2023)
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The guidance contains four main sections in addition to this introduction:
A young carer is a child or young person under 18 years old who spends time looking after or helping a family or household member that would find it difficult to cope without this help. The person may require support from a young carer for a range of reasons, including because that person is physically or mentally ill, disabled or misuses alcohol or substances. Most young carers look after a parent or a brother or sister. A young carer may be caring for more than one person, for example, a parent and a sibling.
A young adult carer is a carer ‘in transition to adulthood’ and aged between 16 and 25. Young adult carers will be included in this guidance as well as transition support. The guidance for ‘adult carers’ breaks’ will also be of relevance for this group.
Young carers and young adult carers, and the people they support, are from all backgrounds, cultures and religions, with a diverse range of needs. Young carers are more likely than their peers to have a special educational need or a disability, meaning they have care and support needs of their own.
Young carers are one and a half times more likely to be from BAME communities, and are twice as likely not to speak English as their first language.
Young carers and young adult carers provide a range of support. Day-to-day responsibilities may include:
The data from the 2021 census, published by the Office for National Statistics shows there were approximately 120,000 young unpaid carers (aged 5-17) in England. Across England and Wales 71,120 young people aged 18-24 are providing between 20-49 hours of unpaid care per week, rising from 43,950 young people at the 2011 census.
A 2023 survey by Carers Trust found that 51 per cent of young and young adult carers care for 20-49 hours each week. 56 per cent said that the time they spent caring had increased in the past year. This time did not reflect the time they spent worrying about the person or people they support, highlighting that the caring role continues when not physically together.
Young carers and young adult carers have been found to be at a higher risk of a range of poor outcomes when compared with their peers.
During COVID, research by the Carers Trust found a steep decline in the mental health and wellbeing of both young carers and young adult carers. More recently, most studies included in a systematic review found that young carers had poorer physical and mental health, on average, than their non-caregiving peers (Lacey, Xue and McMunn 2022).
Regarding young adult carers, research has found that young people (16-25) who provided care were found to: be less likely to be in employment, have lower earnings from paid employment, and have poorer mental and physical health than young people who did not provide care.
I wouldn’t say that my caring role impacts my life; I would say that it is my life.
Ollie Mallin, Welsh Youth parliament member and young carer (Carers Trust 2023)
This guide to young carers’ and young adult carers’ breaks and support is intended as an additional resource to the carers’ breaks for adults guidance. There are some overlaps, especially for young adult carers and some services for carers offer support for all age groups. There are some similarities, particularly in relation to working in partnerships across local authorities, health and the third sector, but there are also some differences in relation to the legal duties and the types of breaks and support that are appropriate.
Many services for young carers are part of a larger carers service that supports carers of all ages. Others are attached to children’s services or services for particular illnesses or disabilities that additionally support carers. Therefore, for some services both sets of guidance will be relevant.
As with adult carers’ break, there is no ‘one size fits all’ approach for young carers.
Many young carers’ services do offer what is sometimes called ‘respite breaks’ – where the young carer has time away from the person they care for, often as part of a residential break. In practice, most services will provide a range of health, wellbeing, financial and emotional support for young carers, as well as residential breaks. Breaks and support cover a wide range of services and activities, taking a ‘whole family’ approach. These can include regular leisure activities, holidays, training opportunities, one-to-one support, counselling, group work and activities for the family to enjoy together.
A whole-family approach aims to provide families with access to personalised, integrated and holistic packages of support that address the underlying factors causing young people to take on inappropriate and/or excessive caring responsibilities.
The Children and Families Act 2014 and the Care Act 2014 placed a legal duty on local authorities to identify young carers and carry out both a needs assessment and a transition assessment to consider the impact of caring on the child and family using a whole-family approach. Support for a child, young person and / or whole family may be provided under the Children Act 1989, including as part of early intervention services. The law does do not compel local authorities to specifically provide respite or breaks for young carers, but breaks may be provided as one form of support or as part of a support to the whole family.
The care and support statutory guidance for the Care Act (Department of Health, 2016) is focused on children not undertaking inappropriate or excessive caring roles that may have a negative impact on their development. Care and support needs of an adult may be addressed under the Care Act 2014 so that a child or young person is not undertaking inappropriate and/or excessive caring.
Following the implementation of the Health and Care Act 2022 on 1 July 2022, clinical commissioning groups (CCG) have been abolished and their functions have been assumed by integrated care boards (ICB). NHS services and ICBs have a significant role to play, particularly in the identification of young carers. Under Section 25 of The Health and Care Act 2022, ICBs have a legal duty to involve unpaid carers and their local representatives in the commissioning and designing of services that impact them.
Being a young carer: your rights (NHS 2021)
Supporting professionals working with young carers (The Children’s Society)