Kaddy Thomas, Founder and CEO, Elijah’s Hope CIC and Carers Collective
There are an estimated 10.6 million unpaid carers in the UK, which translates to one in five adults. One in seven of them is juggling care with paid employment.
The care they provide contributes a staggering £445 million to the economy every day. That’s £162 billion per year!
But the UK’s unpaid carers are also some of the most stressed and burnt out in the world. Many face a daily struggle with their own emotional, physical, and mental health.
So, we have to ask the question, who’s caring for the carers?
My experience as an unpaid carer
The reason this topic is so close to my heart is because I’m an unpaid carer. People often assume that I became a parent-carer when my son Elijah was born in 2006. Like me, he has Apert Syndrome, a rare genetic condition that causes bones in the skull, hands, and feet to fuse.
In fact, because I have Apert Syndrome, I wasn’t fazed by Elijah’s diagnosis, as I knew that it hadn’t held me back.
Unfortunately, things changed in 2008. At 18 months old, Elijah developed a post-surgical infection. This caused a catastrophic brain injury and changed our lives forever.
Back-to-back medical appointments, long hospital stays, rehab, and meetings filled our days. Elijah needed around-the-clock care. I needed to grieve the life we had lost.
The early years were a baptism of fire. You have to learn how to navigate a strange new world and speak a new clinical language!
I spent 2011 to 2015 campaigning for Elijah to have an Integrated Personalised Care Budget. The CCG signed it off in April 2015. Elijah was in hospital at the time after a long period of illness, during which he had a tracheostomy. The budget gave me much greater control over the services we use. I could also train and recruit a care team centred around Elijah and his needs.
As fantastic as this development was, I’d never managed a large care budget and team before. Indeed, I became a care manager overnight but with no training or support.
Within two years, I hit a crisis point. I was emotional, overwhelmed, reactive, and struggling with when to be mum, and when to be a manager. With carers in and out of my and Elijah’s home 24 hours a day, I felt I always had to be in manager mode.
It was around this time that I had the opportunity to work with a coach. She understood the demands I was facing as an unpaid carer. Working with her was life changing. I learned how to set boundaries, advocate for Elijah, and manage a team. My confidence and resilience skyrocketed.
In 2020, as the pandemic began to unfold, I experienced the many stresses of keeping Elijah safe and well. I realised that I was far more equipped to cope than many carers because of the coaching I’d had.
This was when I decided to launch The Carers Collective.
How we support unpaid carers through The Carers Collective
The Carers Collective was born out of a passion to support other unpaid carers. These are people who have to facilitate, communicate, negotiate, and firefight every day. Our mission is to be the first port of call if they are struggling with their mental health and well-being.
Working with a qualified therapist, The Carers Collective offers an online six-week course for unpaid carers. Through this course, they learn vital coping and management skills. We also signpost resources and each course intake becomes a supportive group of friends.
