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Sarah's story

“Do I make a choice to go back to full-time work and risk my brother's health?”

Sarah* cares for her brother who has physical and mental health difficulties. She shares her experience as an unpaid carer and the challenges she is facing in the current economic climate.

Sarah and her mother have been caring for him for over 15 years. “The ideal is to go back to being mother and daughter, not carer. My mum is retired, aging and has her own health issues.” She has also taken on the main responsibility for her niece. “If he was well, he would be a dad to her.”

Sarah was diagnosed with breast cancer during the pandemic. With supporting her niece, caring for her brother and managing her own health conditions she shares the impact this is having on her career.

“I need a permanent job to have paid sick leave and so I can be my niece’s guarantor. I might eventually be another guarantor for my brother. I feel the pressure of needing to have a full-time job. It isn’t the job I want to do but I definitely can’t leave my job due to the flexible hours I get, so I can go to appointments with my brother, give him company when he is going through psychosis and more.”

"I also need flexibility due to my own health. I can’t work anymore than I do. I was diagnosed with cancer during the pandemic, I really should only be working 25 hours but I’m almost working full time – health-wise I can’t sustain this.”

According to Carers UK, 5 million people in the UK are juggling caring responsibilities with work, that’s 1 in 7 in every workforce and this figure is set to increase. Employers are in a key position to make a positive difference in a carer’s life. Sarah shares her experience: 

“I’m grateful to have an employer that supports carers. During the pandemic I had to visit my brother everyday as Covid was contributing to how unwell he was getting. My employer has a contingency plan, meaning I could take paid leave to care for my brother. If they didn’t do that, I would be in a really awful situation, I would be in the position to need to use foodbanks. I shouldn’t have to rely on my employer being ‘generous’ to allow me to do this, it should be standard practice.”

The current economic climate is affecting many across the UK, but caring already comes with a significant increase in costs. As inflation and the cost of living costs soars, carers like Sarah are reaching breaking point.

"My costs are going up - fuel, food, everything. We don’t have money for the energy hike going up too. I have enough money to get through the summer, but I am worried about when winter comes. I lose around £300 every month to care for him."

"I don’t qualify for benefits, I fall through the cracks. There’s an assumption that because I work, ‘I’m ok’. I tried to work full-time, and it was a disaster. I was exhausted because of his care. If I work longer hours, he will be affected, and his health will deteriorate."

"Do I make a choice to go back to full-time work and risk my brothers’ health?"

Sarah and her partner put a plan in place to save each month to help them navigate the winter and rising energy costs.

“We wanted to put aside money away each month, otherwise we knew we would not have the money when the time come. We haven’t been able to do this because everything has gone up – fuel especially. Carers like me have to drive to the person they care for. We’re already stretched now, there’s no wriggle room.”

“At the moment I can heat my house and have food on the table, if things go wrong, I won’t be able to accommodate both my niece and brother. As a unit, costs would soar and we would get less money. I can’t see how, as a family we can cope with the anticipated costs, and the rises. It shows how money has a direct impact on people’s health.”

Carers fill a huge gap in the social care system and save the UK £132 billion a year.** Yet, this comes at a physical, emotional and financial cost to the carer.

“If you take care of the carers, the people they look after are more well.”

“If I knew my costs were covered, and my brother’s costs were covered it means that I wouldn’t need to find an extra job and his health would stable. Which would mean he’s kept well. If I’m ok and his finances are ok, we can just deal with the health side.”

“[If carers had financial support] we would be free to care for them in the manner they need, without having to worry about bills or the next pay check.”

Are you experiencing something similar to Sarah?

We're here to listen. Contact our Freephone Support Line on 0800 0388 885 or support@banescarerscentre.org.uk (Mon - Fri, 9am - 1pm) for focused practical advice or to have the space to off-load, we’re here. 

*To protect the identity of the carer we have anonymised them in this story.

**Carers UK

Need to talk? Call our Freephone Support Line on 0800 0388 885 (Mon-Fri, 9am – 1pm)