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Carers at the heart of patient care: Ann’s story

10 June 2020

The theme of Carers Week 2020 (8-14 June) is ‘Making Caring Visible’.

Ann (pictured right) is a carer for her son who has complex mental health challenges and is currently an inpatient at West London NHS Trust. She discusses the importance of being a carer:

“What’s it like to be a carer? It’s a question I’m often asked and it truly changes on a daily basis.

Many people don’t recognise themselves as carers – they see themselves as just looking after someone they love who’s become unwell. All the same, being a carer is varied and very challenging.

On first diagnosis, especially in a mental health setting, you feel deeply upset as the person you once knew is no longer there. You feel guilty and ask yourself whether it’s something you’ve done or should have done differently. Could this have been prevented? These are all questions that are unreasonable but they go around your head at a speed of knots.

You also become angry. Why has this happened to our family? You feel lonely and isolated. As a mum, you just want to take the pain and hurt away, and make everything better.

Your caring role becomes all consuming. You want answers, but don’t have the knowledge or skills to ask the right questions at the beginning.

As time passes, you learn about the diagnosis and how best to support the person you love. You become more confident, you understand the language and the different treatment options, so it becomes a more positive experience, both for the service user and carer. Of course there will be days when it all goes upside down and you’re not moving forward. No one can tell you how long these feelings will last; for some it is a short episode, but for others it seems endless.

For my own wellbeing, I wanted to play a part in my son’s recovery. I wanted to work with the Trust and share my experience. In doing so, I joined the Carers’ Forum where we meet with other carers and members of staff from the Trust, with the aim of improving patient care.

I write for ‘Inside Out’ the Trust’s magazine for carers and services users, highlighting topical subjects and I’ve received very positive feedback.

I also take part in the annual Carers’ Event in the Cafe on the Hill (a service user-run café in St Bernard’s, Ealing), which gives carers an opportunity to meet, share their experiences and hear about future developments at the Trust. It gives the carers a safe space to relax and enjoy a lovely lunch. It’s also a great way of showing we are not alone.

I also help deliver Carers’ Awareness Training, as part of the Triangle of Care, which offers the carers’ a real role in service users’ recovery journey.”