News

Big story: The hidden helpers

06 September 2019

As a report highlights how the needs of black, Asian and minority ethnic young carers are going unmet, journalist Juliette Astrup explores the issues facing this marginalised group within a group.

‘I get myself and Dev up. Then we come down and give Mum and Dad their medication, check they are okay and we get breakfast and Dev ready for school. I walk Dev to school. I come home then and make breakfast for Mum and Dad and I look at any bills or other household things, then I wash up or do any washing or cleaning and do the other chores like shopping. If I have any time, I try and revise for a bit.’

‘I’d not heard of being a young carer. That is what is expected for Indian families.’

This is the voice of Neha Lathia, aged 19, who lives in Leicester and cares for her unwell parents and her two siblings, aged 14 and 10 (Barnardo’s, 2019a).

A hidden army of children and young people are caring for sick and disabled relatives in homes up and down the UK. Children as young as five are taking on caring responsibilities, and one in 12 young carers in England is caring for more than 15 hours per week (Children’s Society, 2013). Tasks range from cooking, cleaning and caring for siblings, to providing nursing care and emotional support.

 

Who helps the helpers?

While many feel proud of what they do (Carers Trust, 2015), caring responsibilities have an adverse impact on carers’ health, future employment opportunities and social lives (ONS, 2013). Around one in 20 young carers in England missed school because of caring responsibilities, and young carers were less likely than the national average to be in education, employment or training (Children’s Society, 2013). Research in Scotland also found young carers were more at risk in terms of their mental health and wellbeing (Watt et al, 2017).

Yet despite all this, most are not receiving the support they need. A study of young carers in England reported nearly two-thirds (64%) were receiving no support, formal or informal (Department for Education, 2017).

Within this vulnerable group, black, Asian and minority ethnic (BAME) young carers fare even worse. They are likely to encounter the same barriers to access and engagement with services as their white counterparts, but compounded by racism, bullying, language barriers and a lack of understanding of the availability and nature of provision (Children’s Society, 2016).

This is especially worrying given that young carers are also 1.5 times more likely to come from these communities, and twice as likely not to have English as their first language (Children’s Society, 2013).

Furthermore, a report published earlier this year by Barnardo’s – Caring alone – found that BAME young carers are more likely to be isolated from support services (Barnardo’s, 2019b).

 

Hidden issues

This report highlights a number of issues, says its author Emma James, senior policy and research officer for Barnardo’s: ‘Often these families simply don’t know that the support is out there, or the term “young carer” is not something they are familiar with. Children and young people caring for older relatives is something expected within many communities, and the adverse effects on the young carer are not always realised.

‘And there are a lot of issues with children interpreting sensitive information within medical appointments; a lot of families don’t realise they are entitled to an interpreter.’

Asking for assistance is also an issue. ‘There is a real fear in most of these communities of getting agencies involved and asking for help, and a stigma around issues such as mental health and autism.’

Vera Beining, children’s services manager at Action for Children’s Hackney Young Carers project – where at least 90% of the families are from BAME communities – knows the issues well.

‘We worked with an Asian family where neither of the parents spoke English, both were elderly and disabled, and the 16-year-old daughter did absolutely everything in that home. They were worried that she wouldn’t be there to help any more. We had to do quite a few home visits before they’d even consider allowing their daughter to have any kind of support from the project – we had to prove ourselves to them, to build a relationship.’

She adds: ‘Practitioners really need to be persistent, and give people lots of opportunities to disclose – don’t expect that if you ask them if their child is a young carer they’ll say yes.

‘And you can’t assume that because a family is from a certain community the issues will be the same – there will be very specific barriers each family is facing and you need a tailor-made way of engaging with that family and that child.’

 

Improving support

Helen Leadbitter, national young carers lead at The Children’s Society, says that Barnardo’s findings reflect their own. ‘We know it can be hard for young carers to identify themselves as carers and ask for help, particularly hidden groups such as those from BAME communities. Boys are less likely to ask for help, and young carers who care for their fathers too. Those young people affected by all those different issues can be particularly hidden.

Helen says: ‘Health professionals are ideally placed to identify young carers. One thing to bear in mind when you are supporting a young person with their own health needs or mental health needs is to ask if there is anyone in their family affected by ill health and disability.’

The Barnardo’s Caring alone report sets out nine recommendations, including access to a translator for all patients who don’t speak English. It has also called for the NHS to work with BAME communities to reduce stigma around mental illness, special needs and disability and improve access to services, and for NHS services to employ community outreach workers to improve understanding and relationships in BAME communities.

‘It is down to professional agencies to ensure they are getting into these communities and raising awareness of what a young carer is, the impact it can have on a child, the support and the services out there for them,’ adds Emma.

‘It means overcoming the language barrier and ensuring websites and materials are translated, and recognising cultural issues, such as by organising groups on days when the children don’t need to go to mosque, or ensuring the food is halal. Getting in touch with religious leaders in communities and sharing that information can also help reduce stigma.’

And while the Barnardo’s report is focused on England, its findings are applicable around the UK, says Emma. ‘The demographics are different, but the issues and the recommendations are the same across the board.’

 

How you can help

When it comes to identifying young carers, community practitioners could have a ‘crucial role to play’, says Emma. ‘These are the people that are in the communities, in the schools, in the family homes, and see these young people and the family situations first hand.

‘Any practitioner can make a referral, and services will then make an assessment of what the families need. They can provide family support, one-to-one support, peer groups and respite, and can liaise with schools and other agencies. There is a lot that can be done. Just to realise that there are other children in the same situation, and that there is more to their lives than being a carer really makes a huge difference.’

For health visitors specifically, Emma says: ‘If an HV sees a mother who is disabled or has mental health or substance addiction issues, think about children in the home, and what they are doing within that family.’

School nurses are, she says, ‘in a prime position to support young carers. They could be proactive about awareness-raising, organising groups for young carers, or facilitating the introduction of young carers cards, which young carers can show to teachers when they are tired or feeling stressed with what’s going on at home.’

Helen from The Children’s Society adds: ‘Early intervention for young carers is key. That is the best way to reduce the impact on their mental health and wellbeing.’

 

The biggest barrier?

While the detrimental impact of caring on a young person is understood, and the need to reach out to young carers, particularly those from BAME communities, is clear, perhaps the biggest barrier they’re facing is not stigma, or even lack of awareness, but the current financial climate. Austerity and cuts have compounded the issues, creating more young carers, says Emma: ‘The government is more aware, local authorities are more aware, but until there is more investment this situation will continue.’

This concern is reflected in the first recommendation in Caring alone - that the NHS long-term plan needs to ‘allocate more resources and go much further in its proposals for improving support for young carers’.

‘There is a lot more work to be done with these communities – we are seeing the tip of the iceberg,’ agrees Vera. ‘But as the Barnardo’s report says, it’s not enough to focus on identification, we need the resources to make meaningful interventions and offer meaningful support to families.’

The Children’s Society is backing calls for an additional £3bn for children’s services to plug the ‘funding gap’.

However, without proper investment, the danger is that this hidden army of young carers, especially those from BAME communities, will continue to soldier on alone.

 

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How many young carers?

While census figures are thought to vastly underestimate the true number, they show:

  • 177,918 young carers aged 5 to 17 in England and Wales in 2011
  • 8480 carers aged under 18 in Northern Ireland – 820 of whom care for 50 hours or more a week
  • 37,393 people aged 4 to 24 identified in Scotland as young carers

However there could be as many as 800,000 secondary school age children caring for sick and disabled relatives in England alone, according to research from the University of Nottingham

Northern Ireland Assembly, 2018; University of Nottingham, 2018; Scottish Government, 2017; ONS, 2013


Resources

  • Carers Trust offers resources and information for anyone who works with carers professionals.carers.org
  • The Young Carers e-learning module provides resources and support for schools working with young carers bit.ly/carers_learning
  • This insight document from Glasgow charity Iriss focuses on improving support for BAME carers in Scotland bit.ly/SCT_BAME
  • The Engage toolkit aims to help practitioners support BAME carers and their families bit.ly/toolkit_BAME

References: 

Barnardo’s. (2019a) BAME young carers struggle to get right support, Barnardo’s reveals. See: https://www.barnardos.org.uk/news/bame-young-carers-struggle-get-right-s... (accessed 6 August 2019).

Barnardo’s (2019b) Caring alone: Why Black, Asian and Minority Ethnic young carers continue to struggle to access support. See https://www.barnardos.org.uk/caring_alone_report.pdf (accessed 24 July 20162019).

Carers Trust (2015) Young carers are worried and stressed, but proud of what they do. See https://carers.org/news-item/young-carers-are-worried-and-stressed-proud... (accessed 24 July 2019).

Carers Trust. (2016a) Less than 10% of young carers in Wales known to social services. See https://carers.org/news-item/less-10-young-carers-wales-known-social-ser... (accessed 24 July 2019).

Carers Trust. (2016b) Young carers under eight amongst the most hidden and least supported in the UK. See https://carers.org/press-release/young-carers-under-eight-amongst-most-h... (accessed 24 July 2019).

Children’s Society. (2016) “There’s nobody is there – no one who can actually help?”: The challenges of estimating the number of young carers and knowing how to meet their needs. See https://www.childrenssociety.org.uk/sites/default/files/CFD094_YoungCare... (accessed  24 July 2019).

Children’s Society. (2013) Hidden from view: the experiences of young carers in England. See: https://www.childrenssociety.org.uk/sites/default/files/tcs/report_hidde... (accessed 6 August 2019). 

Department for Education. (2017) The lives of young carers in England: Omnibus survey report. See:  https://assets.publishing.service.gov.uk/government/uploads/system/uploa... (accessed 6 August 2019).

Northern Ireland Assembly. (2018) Carers in Northern Ireland: some key statistics. See https://www.assemblyresearchmatters.org/2018/07/26/carers-in-northern-ir... (accessed 6 August 2019).

Office for National Statistics. (2013) Providing unpaid care may have an adverse affect on young carers’ general health. See: https://webarchive.nationalarchives.gov.uk/20160107224205/http://www.ons... (accessed 6 August 2019).

Scottish Government. (2017) Young carers: review of research and data. See https://www.gov.scot/publications/young-carers-review-research-data/page... (accessed 24 July 2019).

University of Nottingham. (2018) New research suggests more than one in five children in England carry out some care for sick and disabled family members. See https://www.nottingham.ac.uk/news/pressreleases/2018/september/children-... (accessed 24 July 2019).

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