Revealed: Over a third of parents who care for sick or disabled children have considered suicide

More than a third (41%) of parents who care for a child with a disability or long-term illness have thought about suicide, “staggering” new research has found, with experts claiming the systems designed to support them are “broken”.

Dr Siobhan O’Dwyer, associate professor of social care at the University of Birmingham, who led the study, has called for a national carers strategy in England with a focus on suicide prevention, explaining that families with caring duties “deserve better”.

“What it shows is that parent carers are really struggling, and that the services out there for their kids are just not fit for purpose,” she explained. “We have a broken healthcare system. We have a broken social care system. We have a broken special education system, whichever system you look at, it’s broken, and parent carers are being forced to plug the gaps, and it’s taking a really serious toll on their wellbeing.”

The research has also inspired a short film drawing on the real experiences of parent carers in the UK, with one carer calling for the government to “throw the damn lifeboat” to help them and provide substantial mental health support.

Read more:

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• Number of full-time unpaid carers in Britain soars by 70%: ‘Millions of us are carers or need care’
• Adam Buxton: ‘Being a carer is the right thing to do – but it’s so hard, especially if it’s your parents’

More than 800,000 children in the UK have disabilities or long-term illnesses, with research finding that the “majority” are cared for by their parents.

Studies have found that unpaid carers experience higher levels of physical and mental illness, as well as financial stress, with Dr O’Dwyer’s research the first to explore rates of suicidal thoughts. The study found that among those parents who had thought about suicide, one in three had made a plan to end their lives in the last year, but less than half had told someone or sought help.

She explained that as well as parent carers “being forced to provide more and more care, with less and less support”, they are also “under incredible scrutiny”.

“If they fight for their child, they get told they’re being pushy or greedy. If they don’t fight for their child, they’re accused of neglect,” she explained. “These battles are day in, day out, for years on end, so it’s not surprising that so many parents have reached the point where death feels like the only way out.”

The short film, made by Bhulla Beghal of BlueBell Films and the University of Birmingham, illustrates Dr O’Dwyer’s research, which she explained could “help people really connect on an emotional level” with the numbers.

“What we’re really hoping this film will do is connect with people on an emotional level and then really encourage them to act, to write to their MP and say, ‘What are you doing to support disabled kids and their families?'” Dr O’Dwyer said.

“Really, what parent carers need is is change. These systems need to be fixed. I really dare anyone to watch the film and not be moved by it and not want to fight for for change for these families.”

Dr O’Dwyer added that there were numerous factors that led to mental health struggles and suicidal thoughts for parent carers, and that many had never talked about their experiences due to the “shame and stigma” attached to mental health. She explained that the “power” in Beghal’s short film is that it “gives voice to those thoughts”.

“I think the biggest thing is the battles they face and the fights they have to have to get their kids even the most basic of support,” she said. “It is a constant battle. It is a constant fight, and just when you’ve won one fight, you have to have another fight to get your child an EHCP [Education, Health and Care plan], to get them access to a certain therapy.

“It’s that battling that wears people down, and that’s part of the system change that’s needed is to make it less of a fight and less of a battle for people to get their kids support and give their kids the same opportunities that everyone else’s kids get.”

She added that some policy makers may respond to the statistics on suicidal thoughts by promoting clinical intervention, but that while some parent carers could benefit from antidepressants or talking therapy, it is also crucial to speak about “system change”.

“At the moment, unpaid carers as a group save the government £162 billion a year. They’re making this incredible social and economic contribution, but we’re not supporting them,” she said. “It’s really political change that’s needed here, and I’m really keen to make sure we don’t let MPs off the hook with this research, that we say this is not an individual mental health issue, this is a social issue, and it’s a social failing. We as a society have failed to support disabled children and their families.”

‘We don’t have any guiding plan for how we’re going to support carers’

As part of the film and research, members of the public are being encouraged to write to their MPs to ensure disabled children and their parents are able to access the support they need.

Dr O’Dwyer explained that the issue of carers’ mental health is at the “intersection” of many different political issues, including education, the benefits system, housing systems and more, and that “fixing one piece of the puzzle just isn’t going to be enough” when it comes to addressing the problem.

The team has called for a number of changes, including recognising carers as a priority group in the suicide prevention strategy for England, as well as increased funding to health, social care and education services. There is currently no national strategy on unpaid care, and while the Care Act 2014 entitles all carers in England to an assessment of their needs, those assessments do not consider suicide risk.

Dr O’Dwyer explained: “There’s two parts to this. One is support for disabled children, so improving the special education system, there’s a whole lot of policy that needs to happen around disabled children that will then benefit their parent carers, if the parents aren’t having to fight so much.

“For carers themselves, we don’t actually have a national carers strategy in England. There was one, it expired several years ago and the previous government didn’t replace it. The current government has no intention of putting in a new strategy, and yet, if we don’t have a strategy, we don’t have any guiding plan for how we’re going to support carers.

“It’s only when we start to recognise carers and have a national carers strategy, and have them in the suicide prevention strategy, that we then can really start to make change.”

The film premiered at the Liberal Democrat conference on Monday (22 September), which Dr O’Dwyer said was chosen due to party leader Ed Davey’s personal experience with family care and advocacy for carers.

“The Liberal Democrats at the moment are the strongest voice for unpaid carers in the UK,” she claimed. “They are really the ones standing up and saying, ‘We need change here.’ We’re really looking forward to keeping working with them over the next weeks and months and years to see that sort of policy change.”

She added that she and the team hope the film shows “what’s at stake if we don’t act here”, and that it inspires politicians to update policy on carers.

“When it played in the room at the conference, you could hear a pin drop, and that’s really what we’re hoping for – that people will watch it, they will see the issues and they’ll be moved to act,” she said.

“It’s also imperative that we don’t keep making people tell their stories over and over again, that we listen the first time and we take action. I think so many parent carers have been forced to tell their story over and over again, and nothing’s changed. I hope that maybe this film might start to make some change and start to say, ‘listening is no longer enough’. We have to listen. We have to hear the stories, and then we have to act on them.”

Big Issue has contacted the Department of Health and Social Care for comment.

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