Asian young carers struggle to get right support, report reveals

Rupanjana Dutta Wednesday 22nd May 2019 10:57 EDT

Children from British Asian and other ethnic minority background, especially who care for ill or disabled relatives are more likely than other young carers to be isolated from support services, a new research has revealed. It further says, in England, carers from these communities are missing out on their childhoods because of the additional responsibilities and stresses they have to deal with. 

The research by UK’s leading children’s charity Barnardo’s based on interviews with BAME young carers and practitioners found that many young south Asian carers were far too often being relied upon as interpreters, relaying technical and deeply personal medical information between patients and doctors, which can lead to misdiagnosis and increased anxiety within families. 

Furthermore, the concept of a young carer is unfamiliar to many ethnic minority communities as helping your family and extended family is often expected. Often suchfamilies do not want agencies involved as there is a deep mistrust of social services, or authorities and they are fearful of their families being split up. Additionally, there is stigma within manyethniccommunities in acknowledging mental health and disability issues and in seeking support. 

Neha, Priyanka and Dev Lathia- young carers in Leicester 

The Caring Alone report highlights how young carers like 19-year-old Neha Lathia from Leicester are affected, when she suddenly had to care for both parents and her two siblings, Priyanka and Dev, while studying for her A-levels. She and her siblings pay bills, cook, clean, shop, do the washing, run the house and provide emotional support to their parents.

Their father Jayanti Lathia came to England from India in 1995 and mum Jagruti Lathia came following their marriage in 1998. He worked long hours on night shifts for several years as a cleaner and maintenance worker on Leicester’s bus fleet.

Jayanti has a serious rare heart condition caused by a tumour on his heart. In 2017 he had heart surgery and has had a pacemaker installed, although his heart continues to run very fast. He can only walk a few steps and is suffering from leg cramps and depression and as a result is unable to work. After his surgery Jayanti had to stop driving because of the medication he was on. His daughter Neha had to take him to hospital in his wheelchair on the bus.

When after years of chest pains and tests Jayanti had to have his operation, his wife Jagruti needed to support him and their three children, Neha (now 19), Priyanka (14) and Dev (10). During this time Jagruti suffered a stroke that has left her with her legs paralysed, her memory badly affected and with difficulty talking. 

The family live in a two bedroom house, Jayanti is bed bound in one room downstairs and Jagruti sleeps in the other one. The children sleep upstairs. There is only one toilet and that is upstairs.

“Everything changed for me when my parents got ill” says Neha, who was 17 at the time. “I was doing my A levels at college. My father had had his operation and we were getting ready to start school and college again in September. I was with my mum in the hospital when she had her stroke. 

“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?”

To make things even harder Neha and her sister also needed operations as they had the rare condition inherited from their father, and Neha had a tumour near her liver that needed hospital treatment. Dev does not have the condition but has a yearly check-up just in case. 

“At the same time as my mum had the stroke I had hospital appointments for my operation and I had to take time out of college myself for the surgery which added to the stress. I missed about seven weeks of college after the surgery and it was a constant struggle of catching up when I did go back and then at the same time have to come home and look after my parents and make sure they were okay.”

The children’s parents speak English, but it is not their first language and they sometimes need to express themselves in Gujarati.

“I have to translate at most hospital appointments” Neha says. “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.” 

How does a typical day go in Neha's household?

A typical day for these children is demanding. Speaking to Asian Voice, Neha said, “I get myself and Dev up and Priyanka gets herself 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 - Priyanka makes her own way. 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, but I always need to stop to give mum her medication at 12. I need to be sure about the medication for everyone – who is taking what and when – because it’s important that things are taken at certain times.”

The effect of her caring and her own health problems on Neha has been huge. 

“It has been difficult. There’s a lot of remembering, making sure that everything gets done on time, especially that the medication is right and on time, but you get used to it and it becomes part of your daily routine. I stay up late revising – I need to make sure that my exams go well. But the stress of everything keeps me awake and mum and dad sleep downstairs so I need to check they are okay. 

“I’ve taken a gap year to help out at home, but I’m hoping to go to university next year. I have prioritised my parents as I need to stay at home for them, so I’m hoping to go to De Montfort University in Leicester to do biomedical science or I might do paramedicine.

“I originally wanted to do medicine but the mix of everything - having to care, and my own health problems - made getting the grades I needed a struggle. My A level results were better than I thought they would be given everything that has happened, but I do need to retake.” 

Stigma and isolation

All the children have found that being a young carer can be isolating. After Mrs Lathia’s stroke a hospital social worker put the family in touch with Barnardo’s CareFree Service for young carers. Barnardo’s has been able to provide support to all three children, with the family’s support worker acting as an advocate in school and with the council about their housing needs, with social inclusion activity, the grants for driving lessons, school uniform and the laptop and a referral to Adult Social Care for a carers assessment, counselling for Priyanka and support for the family when Priyanka was going through her ownoperation.

But Neha added, while the changes in her life that it felt unfair at first but she is typically positive.

Barnardo’s Chief Executive Javed Khan said, “Many young carers already have it tough, balancing cooking, cleaning, washing, shopping, and helping to look after siblings, alongside trying to keep up with their school work. But young carers from some BAME communities are even less likely to access support, due partly to the stigma attached to asking for help. 

“Young people are often proud of their role in caring for family members. But as a society we must protect them from taking on too much responsibility at a young age, and from sacrificing their education, or physical and mental health. It’s not right that BAME young carers often have to interpret complicated medical information for a loved one, which can lead to misdiagnosis and cause additional stress. This group of vulnerable children are often “hidden”, and there is an urgent need to break down barriers so they are not left to struggle on their own.” 

Key recommendations

Key recommendations in the Caring Alone report saythat all patients who don’t speak English should have access to a translator. Children and young people should never be expected to translate for a relative. Additionally, the report recommends that the NHS should work with communities to tackle stigma around within BAME communities to reduce the stigma of mental illness, special needs and disability and improve access to services. Furthermore, NHS services should employ community outreach workers to improve understanding and relationships in BAME communities.

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