Tired of Spinning Plates is a research project working with family carers to explore their experiences of caring and mental health.
We know little about their experiences; we wanted to find out more about their lives, and how caring affects their mental health, in positive and perhaps less positive ways.
The project began in October 2022 and ended in November 2024. We worked with family carers and people with learning disabilities, who were key to deciding how we did the research. Our plan had originally involved co-designing a survey to find out more about family carers’ mental health.
However, they told us they were “survey weary” and suggested we do something different – something people might enjoy.
They suggested we create an online exhibition where they could share their experiences. Several family carers found it easier to say what they wanted to by writing poems. We also made short films with 13 family carers and three people with learning disabilities about their experiences of care and caring.
What did we find out? That love drives care, but this love is often exploited by health and social care services. There is little recognition or understanding of the lives of family carers, who are denied basic support, kindness and information.
Family carers say that caring for a person with a learning disability is not the problem. The problem is the fight for services and support, which takes place over decades, while they worry about the future.
One family member explained of the photograph she submitted: “The folders on this chair contain all the paperwork of the battles (and undertaking) with different organisations over many years to try to get the right support for my son. I have a filing cabinet, but these folders sit on this chair in my home office. I wish I could simply file all this away.”
Family carers say that the health and social care system is broken and lacks even basic kindness.
Carers are often unable to make an appointment with a GP and are not offered reasonable adjustments. They often do not want to take medication for depression because they do not see themselves as depressed but exhausted by continually fighting. They know that going for a walk or spending time with friends is good for mental health, but can’t do it because of a lack of support. They describe social services as “hostile”, “unhelpful” or as “totally absent” in their lives.
What do family carers want you to know?
- They love the person they care for
- Fighting for services and support causes mental distress
- They often care for decades, even if their relative lives elsewhere, so their experiences are both the same as and different from those of some other groups of carers.
What do family carers want you to do?
- Take a holistic approach: experiences of caring are always relevant to discussions about family carers’ mental and physical health
- Be flexible: family carers need flexibility to access mental health services and support
- Be kind: small acts of kindness really matter. A phone call and a “how are you?” matter more than you know.
One parent carer told us: “For someone like me, who feels that every day is a spin around the lip of a potential catastrophe curve, where any little wobble could push the gyroscope of my life off the edge, even the feeblest kindnesses are immensely valuable.”
Tired of Spinning Plates – online exhibition
Professor Katherine Runswick-Cole is chair in education and Dr Martina Smith is postdoctoral research associate at the University of Sheffield
