Menu Open search

Caring alone: the young carers who struggle to get support

Published on
29 April 2019

Young carers work hard to support their families

It’s a lot for a child to take on, but caring for loved ones is something that many young carers are proud to do. But they need support - and our latest research shows that the journey to finding it is harder for some of them.

The background

We’ve spoken about the responsibilities that young carers often have before - responsibilities that an adult might struggle with. 

On top of this, those around them often don’t know or realise that these children need extra support - in a 2017 survey, 40 percent of teachers said they weren’t confident they would be able to identify a young carer in their class. 

Cuts to adult social care services also impact children as they’re more likely to have to help fill in the gaps. To give you an idea of what this means, some children we spoke to take on up to 30 hours of caring duties a week. That’s nearly a full-time job in itself.
 
We also found that GPs were often unaware of (and weren’t asking) who would be caring for their patients in the home, which means the patient’s children might be tasked with this, without being given any support.

Often, it falls to a young carer to manage the medication for their ill parent or relative and get them to their medical appointments. This is a huge task in itself, only to be made harder when there’s a language barrier between the medical staff and the patient. Where there’s no professional translator available, the young carer often takes on this additional role. This is far too much responsibility for a child to undertake or understand. 

This brings us to the topic of the carers who seem to struggle the most to get the support they need - children from Black, Asian and Minority Ethnic (BAME) communities.

The hidden issue

Just under 20% of the total number of young carers we support have been identified as being from non-white communities. Young carers of all backgrounds often find it difficult to find help to manage their responsibilities and live a normal childhood, but BAME young carers are even less likely to receive support. There are several reasons for this.

To start, the concept of a ‘young carer’ is unfamiliar to many BAME communities - helping your family is seen as a regular part and duty of life, and the negative effects of these added responsibilities on young children aren’t well known. In fact, language can demonstrate this gap in acknowledgment - the National Black Carers and Carers Workers Network highlighted their inability to find a word which effectively translates to ‘carer’ in Bengali, Gujarati, Urdu and Punjabi.

There’s also judgement from the wider community to think about. This can be a worry for BAME families, especially where disability or mental health is involved, as there’s a stigma attached to talking about these.

To add to this, some BAME families might not seek support or take it where it’s available due to fear and mistrust of agencies or authorities. Parents might worry about the consequences of getting other people involved, like being removed from the family or having their children put in care. 

It’s vital we’re aware of these issues in order to make sure every young carer is able to get the support they need and that it’s as inclusive as possible.

The Lathias’ story

Meet Neha, Priyanka and Dev Lathia - siblings and young carers from Leicester.

Three young carers sat at a table


Neha is 19 years old and suddenly found herself having to care for both parents as well as 14-year-old Priyanka and 10-year-old Dev while she was studying for her A-levels.

Their dad has a serious and rare heart condition caused by a tumour on his heart. In 2017, he had heart surgery. He can only walk a few steps at a time and suffers from leg cramps, as well as depression. 

Their mum had a stroke that left her legs paralysed, her memory badly affected and with difficulty talking.
 

Everything changed for me when my parents got ill. I had a panic, thinking how is Dev going to get to school? How are we going to pick him up? How am I going to get to college on time? And how will I have enough time to do my homework and revise?

Neha

Young carer

To make things even harder, Neha and her sister Priyanka also needed operations as they had inherited the rare condition from their father. Now, Neha and her siblings manage the task of running the house as well as providing emotional support to their parents. 

Neha often takes on the role of translator for her parents. Both her mum and dad speak some English but it isn’t their first language.

I have to translate at most hospital appointments. There’s never been a translator at the hospital, so I have to be there to do it. And sometimes a word simply doesn’t exist in Gujarati, so I have to try and find another word or explain some other way.

Neha

This is one of the key issues highlighted in our study. We found that young carers
were being taken to medical appointments (often missing school to do so) and were being relied upon to interpret. A parent might not want to give their child every detail of their medical issues. This can mean the young carer only gets some of the story. They’re unlikely to understand the detail of what is being discussed, so significant information can get lost in translation. You can see how there’s a real risk of a patient being misdiagnosed or issues remaining unidentified.

How we help the family

A hospital social worker put the family in touch with our CareFree Service for young carers. Through the service, we’ve supported them in a few ways.

I’d not heard of being a young carer. We were just doing what we needed to do and that is what is expected for Indian families. When we went to Barnardo’s CareFree and I met my worker, it made a real difference. She spoke to the college for me and gave us all support, including getting me grants for driving lessons and a laptop.

Neha

We also helped with counselling for Priyanka and supported the family when she had her operation. Dev attends a group at the service too. He told us: “My friends knew about my family and needing to care for them, but I think they’ve forgotten about it. I’ve made friends at the Barnardo’s group and there’s a young carer at CareFree who is at my school who I didn’t know about. I enjoy seeing everyone at the young carers group.”

The Lathia family

The service also provided Neha with a young adult carer ID card, which has proved very useful to her.

Neha said: “I’ve used my young carers ID card when I’ve taken Priyanka to hospital and the GP. People have said ‘where are your parents?’ because of course they can’t come, so it’s been useful to have the card, otherwise they might not have talked to me or allowed me to be there with Priyanka.”

Neha told us the changes in her life felt unfair at first, but she is positive. 

Everything happened one thing after another and it was hard to adjust to, but there’s not much you can do and you have to be strong. It does make you independent. Before all of this I couldn’t cook! [The CareFree service] gives you all the life skills – before I wouldn’t know about those financial things or the medical things and you learn these things that you didn’t know before.

Neha

She’s taken a gap year to help out at home, but hopes to go to university next year to study biomedical science or paramedicine, after resitting her A levels. 

What needs to change

Stories like Neha’s show us there is plenty of hope for bright futures for young carers if they get support to help them manage their responsibilities. They also tell us we need to do more to ensure that the term ‘young carer’ and the impact of caring is widely known and understood.

Services set up to provide support for young carers must be aware of the diversity and unique vulnerabilities of this group. Agencies need to know about cultural commitments and make positive adjustments to ensure children aren’t missing out - for example, our CareFree service runs Saturday sessions as many of the young carers that go would attend mosque during the week. 

Children and young people should never be expected to translate complex and personal medical information for a relative. The NHS spends millions on interpreters and translators each year, and more needs to be done to highlight these services to families so that young carers don’t have to step in.

As well as these steps, we need to do more as a society to help break down stigmas, wherever they are. It’s not weak to ask for help. It’s normal to need support for managing health - both physical and mental. We cannot keep these issues behind closed doors without any consequences.

Children and young people are capable of incredible things with the right support - we owe it to all young carers to make sure they do not go unnoticed.

Read our full report.