In the first dedicated study of suicide risk in parent carers, one in twelve of the 750 parents surveyed said they had made a plan to kill themselves, and some had attempted to take their own life. But only half of those who had thought about suicide had ever told anyone or sought help.
The research, funded by the National Institute for Health and Care Research (NIHR) and led by Associate Professor Siobhan O’Dwyer from the University of Birmingham, was conducted in partnership with parent carers and has been published in the journal Archives in Suicide Research.
Dr O’Dwyer says: “Many people will be shocked to hear that more than 40% of parent carers have thought about killing themselves. But what’s really shocking is that so many parent carers have been feeling this way and nobody has known until now. Parents of disabled children, and children with serious illnesses, are the hardest working, most dedicated people I know. But so much of what they do goes unseen, and they have to battle constantly with a system that has little interest in supporting them or their children.”
More than 800,000 children in the UK have disabilities or long-term illnesses and the majority are cared for by their parents (who are known as parent carers). Previous studies have shown that, as a group, parent carers experience high rates of physical and mental illness, social isolation, relationship breakdown, and financial distress, but this is the first time parent carers in the UK have been asked about thoughts of suicide.
I hope these findings will help parent carers feel seen and understood. So many of us have felt this way, but each of us thought we were the only one. My daughter is 30 now and lives in supported living. When she was first born and we were told she had a rare condition the feelings of shock, fear and guilt were overwhelming alongside coping with my own distress and caring for a new baby. I had some really dark days and thought seriously about ending my life
Anna, parent carer
Dr O’Dwyer adds: “Parent carers love their kids and want the best for them, but they often feel trapped in the caring role. While other people’s kids become increasingly independent as they grow up, parents of disabled or seriously ill children know they’ll have to provide essential care for the rest of their lives. And when you combine this with the impacts of austerity, a crumbling health system, and systemic failures in social care, it’s not surprising that parent carers become overwhelmed by the caring role and see suicide as the only way out.”
Anna, a parent carer and co-researcher on the study, says: “I hope these findings will help parent carers feel seen and understood. So many of us have felt this way, but each of us thought we were the only one. My daughter is 30 now and lives in supported living. When she was first born and we were told she had a rare condition the feelings of shock, fear and guilt were overwhelming alongside coping with my own distress and caring for a new baby. I had some really dark days and thought seriously about ending my life. I still fear for her future. We spent so many years just to get her the same opportunities and experiences as other kids, to give her the best possible life, but now things are in place, what if it all goes wrong? Who will fight for her when we’re no longer around to do so?”
Julia, another parent carer and co-researcher on the study, says: “When we first talked about doing this research, parent carers were scared to even say the word ‘suicide’. Because it’s hard to explain to people that you can love your child and want the best for them, but also be so overwhelmed that you want to kill yourself. Every parent carer lives in fear of having their child taken away if social services think we aren’t coping, so we simply don’t feel safe to tell our GPs or social workers how we’re feeling. And even when we do muster up the courage, often nothing happens to address the cause and relieve the burden of care.”
If more than 40% of parent carers are contemplating suicide, it’s a clear sign that things like carers allowance, carers leave, and carers assessments are not enough to mitigate the serious impact of caring. Parent carers desperately need policy makers to step up and take these results seriously.
Dr Siobhan O'Dwyer, University of Birmingham
Carers are not currently recognised as a priority group in the national mental health and suicide prevention strategy, and suicide risk is not addressed in the national carer strategy. Although the Care Act 2014 entitles all carers in England to an assessment of their needs, Carer Assessments do not consider suicide risk and many carers have never received an assessment.
“The support currently available for carers is not fit for purpose”, Dr O’Dwyer concludes. “If more than 40% of parent carers are contemplating suicide, it’s a clear sign that things like carers allowance, carers leave, and carers assessments are not enough to mitigate the serious impact of caring. Parent carers desperately need policy makers to step up and take these results seriously.”
Carers who need urgent support can call The Samaritans on 116 123 or text SHOUT to 85258.
