South London and Maudsley Carers Week: Alex's experience of being a working carer
This week (9-15 June) is Carers Week. Carers Week is an annual campaign to raise awareness of caring, highlight the challenges unpaid carers face and recognise the contribution they make to families and communities throughout the UK. It also helps people who don't think of themselves as having caring responsibilities to identify as carers and access much-needed support.
The most recent Census in 2021 found that there are 5.8 million unpaid carers in the UK, with more than 3 million in paid employment and the 2024 NHS staff survey found that one third of NHS staff (32%) are providing unpaid care.
It is so important that we take steps to make sure our staff have access to the support they need, when they need it.
In April 2024, the Carer’s Leave Act 2023 made provision for employees who have caring responsibilities to take at least one week of unpaid carer’s leave per year and this has also been factored into Trust policies.
Alex's Story
I am a working carer. I work full - time at South London and Maudsley and I care for my husband, who suffers from a chronic and enduring mental health problem. He has several physical health problems too – but physical health is often much easier to deal with than mental health problems. You can see when he has difficult y walking. You can see when he is having an epileptic fit. You can see when the tremor in his hands is so bad he needs help getting dressed in the morning, or with making sure he doesn’t spill his morning coffee everywhere .But you can’t see inside his head and often getting him to open up is a long, frustrating and arduous journey.
Being a working carer is a balancing act. You are a full-time carer for your loved one, but you are also a full-time employee with responsibilities to your organisation and your team and anyone who knows anything about maths knows that despite what The Apprentice contestants say you can’t give 100% to two things at the same time. So, it’s like juggling multiple very precious balls at the same time, 24 hours a day , seven days a week, 365 days a year without a break.
Living with someone with a severe and debilitating condition is hard work. It is emotionally and mentally exhausting. I find that I can never really relax, even when he is on a good day, because I am always wondering when the next problem will occur, and we can never really make plans too far in advance in case he is having an off day. When I am work and my mobile rings, I worry that something has happened. If I know that he has to do something like attend an appointment that I can’t help with I worry that he will be so anxious that he will become difficult or that the anxiety will trigger a seizure. There are days when work is extremely busy, and I need to focus and concentrate. These are days when I can do without interruptions, and so when they do come it is difficult not to get frustrated with him or to appear distracted at work.
I am not the only working carer in the organisation by any means, I’m not even the only working carer in our tea m. That’s why I am really glad that I work with a team who understand when issues arise, and why I am glad that my line manager and my director appreciate that there may be times when I need to work flexibly in order to manage any issues that arise. They understand that in order to get the best out of me I need to be able to feel in control of my situation and if that means changing my work from home days at short notice so that I can keep an eye on my husband or work slightly different hours in order to attend an important medical appointment then that is not only best for me and my peace of mind but also best for the team and my productivity.
I am really pleased that the Trust supports working carers to work flexibly wherever possible and values the contribution that we make not only in terms of our professional expertise but also in terms of our lived experience as carers .
It’s also important to remember that it doesn’t just affect me. My daughter is 24 now but , like me, has lived with this for a long time. As a young carer, it shaped her childhood and continues to shape her adult life. When she was younger, I was very lucky that I was able to get her support from the local carers centre and from the age of 8 she had external support where she could voice her fears and concerns and most importantly of all was able to be a child with other children like her. Carers Centres do a wonderful job. They help young carers like my daughter to grow into a wonderful, caring young people , and give families room to breathe when they need it most. Despite my daughter’s lack of confidence in some areas, she is now an ambassador for young carers, giving them a voice locally and working with the centre to raise awareness of the issues affecting young carers, including talking at conferences and also to Members of parliament.
Further support on caring for a loved one with a mental health problem: Information for carers
