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Stop the clock

28 January 2019

Sara GowenSara Gowen

How can we prevent young carers undertaking inappropriate or excessive care? What are the challenges, evidence and actions needed to ensure we are not relying upon children and young people to provide care?

Identifying young carers

Young carers are a largely hidden group of children and young people who provide vital care for their families, often 24/7 and over prolonged periods of time. The nature and intensity of young carers’ responsibilities often severely impact their own health, social, economic and educational well-being.

  • One in 20 young carers miss school because of their caring responsibilities.
  • Young carers are 1.5 times more likely to have a long-term illness, special educational needs, or a disability.
  • Four in ten young carers report feeling sad in the past week.
  • One in four young carers report feeling lonely in the past week.
  • One in two young carers report feeling angry in the past week.

The prevalence of young carers in the UK is unknown and is indicative of the problem at the heart of the research. We cannot identify the scale and scope of young caring in the UK if we do not hold both quantitative and qualitative data.

Young carers’ rights

We have legislation that outlines the rights of young carers but their numbers are rising. As a service, Sheffield Young Carers provides high quality support to young carers and we are building the capacity of our communities and our city to identify and support as many young carers as possible. Great, but are we challenging the fundamental and ethical issue of how our health and social care system is relying upon children. I regularly meet young carers who are undertaking levels of care that are both inappropriate and excessive, but who is defining what that means? How can we spot when this is happening?

24 hour caring

If you want to know the answer, start with the experts. I asked our young carers how they would define inappropriate and excessive caring. This isn’t easy to answer as many have normalised these tasks as something they think everyone does:

‘When you think about it though, people think like, when someone’s got used to it for so long you don’t really realise that you’re a young carer, unless someone goes ‘you’re a young carer you know’.’ Young carer aged 15

Our research found that young carers are often holding responsibilities for caring for their family members 24 hours a day, seven days a week, 365 days of the year. The young carers we talked to found night time caring responsibilities the most challenging, for example, the constant worrying, responsibility for checking on the cared for person, checking their home is safe and secured for the night. The disturbed nights and lack of sleep have a profound impact on young carers’ daily lives and especially on school days. We conclude that government needs to urgently ‘stop the clock’ on round the clock caring by young people through better monitoring, support and, where necessary, intervention.

Define the issues, create the guidance

To date, legislation has failed to adequately define what is meant by ‘excessive’ and ‘inappropriate’ caring by children. In order to develop effective protocols to implement the legislation it is necessary to define ethical boundaries for what is understood by inappropriate and excessive caring. Our research aimed to give voice to young people themselves to help shed light on this emotive and complex issue. The findings led to the development of provisional indicators.

The research also highlighted the need for national and local government to effectively implement the Care Act and set guidelines for professionals and families to determine what is inappropriate and/or excessive. Without these guidelines and a push to implement young carers’ rights, we will continue to rely upon children to fill the gap in services.

Next steps

We need to ask young carers across the country to contribute to defining inappropriate and excessive care. We need to work with local authorities to pilot a set of guidelines which will help professionals identify young carers who do too much. We then pressurise Government to take up the national recommendations in the research: develop national statutory guidelines and a ‘young carer well-being index’ to define and assess inappropriate and excessive care, with the experts by experience – young carers themselves.


About the author

Sara Gowen has worked in youth and community work for 30 years at a local and national level and is currently Managing Director of Sheffield Young Carers. Her work with young carers has inspired her to undertake Crook Public Service Fellowship research to address the unacceptable level of caring responsibilities our children and young people undertake.


Related resources

Read the report from Sheffield Young Carers – STOP THE CLOCK: How can we prevent young carers undertaking inappropriate or excessive care?


References

Barnardo’s (2017) Still Hidden, Still Ignored. Barnardo’s. Available online: http://www.barnardos.org.uk/get_involved/campaign/stillhidden.htm

Cheesbrough et al (2017) The lives of young carers in England. Department for Education. Available online: http://ow.ly/tBrw30ntzDX

Government UK (2014) Care Act 2014. Available online: www.legislation.gov.uk/ukpga/2014/23/contents/enacted  

Government UK (2014) Children and Families Act 2014. Available online: www.legislation.gov.uk/ukpga/2014/6/contents/enacted

Kendall C (2018) Being a young carer. BBC. Available online: www.bbc.co.uk/news/resources/idt-sh/Being_a_young_carer  

Gowen S (2018) STOP THE CLOCK: How can we prevent young carers undertaking inappropriate or excessive care? Sheffield Young Carers. Available online: https://www.sheffield.ac.uk/polopoly_fs/1.812162!/file/Sheffield_Solutions_Stop_The_Clock.pdf

The Children’s Society (2013) Hidden from view: The experiences of young carers in England. The Children’s Society. Available online: https://www.childrenssociety.org.uk/sites/default/files/tcs/report_hidden-from-view_young-carers_final.pdf

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