This Sussex Life
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This Sussex Life

“It’s not unusual for five-year-olds to be caring for adults”

Feylyn Lewis was 11 when she began caring for her mum. Now, as a research fellow in Social Work and Social Care, she is working with Professor Saul Becker, Provost of the University of Sussex, on a European project looking at how to identify and support the needs of today’s young carers.

Feylyn Lewis

Mum was healthy until she had what was supposed to be routine surgery for degenerative disc disease. Unfortunately the surgeon took out bones from her spine that he shouldn’t have. She thought she would be in hospital for a weekend, but it became a much longer ordeal. She ended up having multiple corrective surgeries and had to learn to walk again. My brother, Ferrell, who was 18, gave up his university degree to care for us, then got a full-time job to pay the mortgage.

I grew up in the United States [Nashville], where there isn’t any support for young carers. We don’t even have the term ‘young carer’. So I was in the home, doing all the things for my mum while my brother was at work. She could have back spasms and be bedridden for days. I didn’t know of any other carers, but it is the sort of thing you keep private. You can easily feel quite isolated. My mum got to the point where she was more stable but could never go back to work. For us it meant we were able to leave home and I studied English and Psychology at Vanderbilt University in Nashville. But I had that continual worry about my mum’s health.

It was after I’d taken a Masters and trained as a counsellor that I became interested in research on young carers. I came to England five years ago to do my PhD with Saul when he was at the University of Nottingham. It’s quite a small area of research, but because of Saul and his work over the past 30 years, it’s now growing. With funding from the European Commission Horizon 2020 programme, we’re currently working with researchers in five other European countries — the Netherlands, Italy, Slovenia, Sweden and Switzerland — to look at the mental health, well-being and resilience of carers aged 15 to 17. What we are seeing is that, although the cultures and health policies may be different, the experiences are very similar in some ways.

We have shown that young carers are at higher risk of depression and anxiety, as well as the physical impacts of caring sometimes for those who are immobile. Recent research has indicated that young carers also experience suicidal thoughts and self-harm. They are also more likely to be bullied at school perhaps because they are different to their peers, especially if the relative they are caring for has mental health issues, or addiction problems, or a visible disability. Carers can become stigmatised by association.

People are often shocked by how young caring can begin. It’s not unusual to hear of five- and six-year-olds doing house chores or giving adults medication. I don’t think I’ve come across toddlers cooking, but if it’s a task that a young person is physically capable of doing then I wouldn’t be surprised if a young person has done it.

Feylyn Lewis with Professor Saul Becker

The US is about 25 years behind the UK when it comes to support for young carers. There are more than 300 supportive organisations in the UK, which leads the world in this field — thanks mostly to the work of Saul. It’s through lobbying, campaigning and academic research that changes have come about, such as the Care Act and the Children and Families Act, which gives local authorities a legal duty to identify and support young carers.

In the UK there are around 800,000 carers under the age of 18, which is about 8% of that age group. The figure has certainly been on the rise because of austerity and cuts to social services. The priority is to identify young carers, to educate teachers and GPs about the mental health and well-being risks, and to have a ‘whole family’ approach to delivering support.

I am prepared to make this my life’s work. It’s a way to honour the sacrifices that both my mother and brothers have made for me, and to carry on the legacy of Saul. My long-term career vision is to take what I have learned in the UK back to the States.

My brother was able to go back to university and graduated two years ago –at the age of 37. My mum’s health has stabilised, so now he feels that his life is his own and he has the freedom to make that into whatever he wants. Obviously we care for our parents out of love and devotion, but this isn’t what she intended for us early on. My mum always had dreams and plans for us to be independent and to live our own lives. I think she’s proud of us now that we’ve both doing that.

Feylyn and Saul with carers and the team of The Carers Centre for Brighton and Hove at the exhibition, Young Carers in Focus, at Brighton Station.

Feylyn is a trustee and Saul is a patron of The Carers Centre for Brighton & Hove. They are both featured in a photography exhibition at Brighton Station, Young Carers in Focus, which highlights the work of the charity and some of the young carers in their roles. The free exhibition is on throughout March, 2019.

Interview by Jacqui Bealing

This profile is part of our This Sussex Life series.

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University of Sussex

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The University of Sussex was the first of the new wave of UK universities founded in the 1960s and we now have world-leading research across all our schools.