Little support and unbearable stress: the deadly cost facing our unpaid carers | UK News

All three had spinal muscular atrophy type 2, which caused problems with moving, eating, breathing and swallowing. Tania’s husband and their oldest daughter had been away on holiday while the ‘overwhelmed’ mother remained at home in New Malden, London, with her three disabled children. 

Tania, who tried to take her own life the same night she murdered her children, was ultimately found guilty of manslaughter and sentenced to a hospital order.

Sir Nigel Sweeney, the judge who presided over the case, said: ‘In the year running up to the fatal events you spoke about killing yourself but not about harming the children. A friend who saw you weekly thought that you looked worn out, but you never moaned. You just got on with looking after the children.’

Six years later, on August 15, 2020, Olga Freeman suffocated her son Dylan with a sponge at their two-bedroom-flat in Acton, London.

The 10-year-old had autism, Cohen syndrome and significant difficulties with language and communication. Due to the pandemic, Dylan’s care had been greatly reduced and Olga – who was divorced from her husband – developed psychotic symptoms. Her little boy’s body was found covered by a duvet with his favourite toys carefully placed beside him. 

Every year in England there are roughly 13 murders or murder-suicides which involve a person caring for a disabled child or family member. The topic is an emotive and divisive one, especially when it comes to online discourse. After a suspected murder-suicide involving an unpaid carer in September, one disabled activist tweeted: ‘I’ve been taken aback by how many people have expressed sympathy for the mother.’

Dr Siobhan O’Dwyer, associate professor of social care at the University of Birmingham, tells Metro it’s important to explore the factors which lead to a tragedy such as murder-suicide.

‘Absolutely, these mothers were responsible for the deaths of their children,’ Siobhan explains. ‘But we have to recognise there’s a bigger issue here. If those parents had had enough support, maybe these tragedies could have been prevented. The continued narrative that these cases are “isolated tragedies which can’t be prevented” just isn’t true.’

In another study led by Siobhan, more than 40% of parents caring for a disabled child said they had thought about ending their own lives, but less than half had ever told anyone they were feeling this way. 

‘Parents of disabled children aren’t superheroes,’ Siobhan stresses. ‘They’re human beings and there’s only so much strain that even the most loving, devoted parent can take before they break.’

Dan White is not a superhero.He’s a dad-of-one who likes sci-fi and heavy metal music. He has an 18-year-old daughter named Emily who has bright red hair, a talent for art and a love for shows like Doctor Who. She is also disabled; the teenager has spina bifida – nerve damage in the spine which means she can’t use her legs – and hydrocephalus – which causes a build-up of water on her brain.

Dan knows the mental toll being an unpaid carer can have.

‘You’re not simply giving someone a cup of tea,’ Dan, tells Metro from the reception area of Treloar College in Hampshire, where he’s just dropped Emily off for art classes.

‘You have to be a physiotherapist, a counsellor, a nurse, a lawyer, a driver, an expert on medical equipment. If you put all those jobs together, carers should be the highest paid people in the country. But they’re not.’

The UK has an estimated 5.7 million unpaid carers. They are at higher risk of physical and mental illness, social isolation, relationship breakdown, and financial strain due to their situation.

‘Until the government understands how much carers contribute to society, then nothing will change,’ Dan adds. ‘More families will suffer and ultimately there will be more fatalities.

‘So many carers I know also don’t have the luxury of having a child at school. These parents are there all the time with a child they absolutely love, but who is sadly exhausting them. Toileting, washing, medicating, hoisting, lifting, calming the child – unpaid carers do everything themselves.

‘There is a humanitarian crisis of care incoming and the Government is shying away from discussing it.’

It’s not just parents of disabled children feeling this burden. The lack of support has led to Katy Styles taking matters into her own hands.

Since 2014, the former geography teacher has been caring for her husband Mark, 56, who has a rare form of motor neurone disease called Kennedy Disease. Katy also cares for her 80-year-old mum who is losing her eyesight and has suffered several strokes.

From her home in Canterbury, Kent, Katy tells Metro: ‘When I left teaching, I wasn’t entirely sure who I was because teaching was such a big part of my identity. I thought I was being Mark’s wife and just doing things that any wife would do. It took me a while to identify as a carer and, when I did, I realised support was so woefully inadequate and that our voices weren’t being heard.’

Katy set up the We Care Campaign in 2018, which calls for greater support for carers and pushes for a long-term solution to the social care crisis. During the Covid pandemic, she mobilised a small army of carers to send stitched plasters to their local politicians.

‘It was to show how we are holding the health and social care systems together,’ Katy explains.

‘We can be made to feel invisible, care was barely mentioned in the general election apart from the Liberal Democrats. Now [from the current government] all we get is “we have no money, will need to wait until after the budget,” but this is urgent. We can’t wait any longer.’

Just last month, the bodies of Martina Karos, 40, and her eight-year-old daughter Eleni were discovered at their home in Salford. While an inquest to determine the cause of death hasn’t yet taken place, police confirmed they are not looking for anyone else in connection to the deaths. A friend of Martina said the ‘devoted’ mum had struggled to care for Eleni, who had cerebral palsy. 

‘At what point do carers stop becoming statistics and start becoming real life? If support, empathy and understanding was in place, beautiful disabled lives would be allowed to flourish and those who care for them would be allowed to find some space to just pause and breathe.’

It’s estimated unpaid carers like Dan and Katy save the British Government around £162 billion a year. So why are they not being showered in support?

Siobhan, who was an unpaid carer for her grandfather in her native Australia before she became an academic, points to the years of austerity faced by people in the UK. This has been further exacerbated by the Covid-19 pandemic, the closure of social care services and the underfunding of the NHS.

‘Carers are having to fight every day for the most basic support,’ says Siobhan. ‘And the support that is there isn’t fit for purpose. It’s not surprising they reach crisis point. 

‘The government relies on the love carers have for the person they look after. But when the system is broken, love may not be enough. And for some carers, killing the person they care for feels like the ultimate act of love, and that’s heartbreaking.’

In the Tania Clarence case, professionals recognised as early as 2010 that the burned-out mum was depressed.

Meanwhile Olga contacted Ealing Council on 26 June 2020 – two months before Dylan’s death – to describe the ongoing stress of her situation. 

‘The warning signs were missed,’ Siobhan continues.

‘It’s only a matter of time before we see more cases like this, that’s my fear. One of the big risk factors for suicide and homicide that we see in our research is entrapment. Carers who are feeling so trapped in their circumstances that dying feels like the only way out. 

‘And for parent carers who are feeling trapped, it’s not about their disabled child – the child is not the problem – it’s about caring for that child in a system that has no interest in supporting them.’

Siobhan, Dan and Katy are all advocating for change and have highlighted three things that could dramatically improve things.

For unpaid carers, having regular respite (where a well-trained support worker cares for the disabled person while the carer has a break) would make a world of difference. Removing red-tape so benefits can be accessed more easily is another step the Government could take; as is investing in more SEND places at school to give parents reprieve’ and creating emergency respite opportunities for carers who are approaching breaking point.

In a bid to raise awareness, Dan has recently written several books for children which feature a disabled main character; and Katy runs a podcast to bring different corners of the caring community together. While they will continue to raise their voice as activists, they also make the most of moments of quiet to protect their own mental health.

Both find solace in the outdoors; Dan goes for runs to clear his head and Katy enjoys river walks with her friend Anne. Dan finds joy in watching Doctor Who episodes with Emily or listening to their shared favourite bands, such as Black Sabbath and Pink Floyd.

Meanwhile Katy and Mark – who met at school in Maidstone when they were 16 – do Wordle together every day and love to sit out in their garden. They get excited when a group of kayakers pass by on a nearby river or when a steam train trundles by on the railway line near their house.

‘It is very easy to become depressed when you’re an unpaid carer,’ Katy adds.

‘Life may be very difficult, but you’ve got to hope there will be a change coming and you can be part of that change. Most of us want to make life easier for the next carer who comes along.’

A government spokesperson told Metro: ‘These are tragic cases and our thoughts are with all those affected.

‘To help the millions of carers and unpaid carers who provide invaluable support to vulnerable people every day, we have announced this week an increase of more than £2,300 a year in the allowance that carers can claim. This will provide carers with the opportunity to earn more and still receive the government support they deserve.

‘We recognise the scale of the reforms needed to tackle the challenges facing social care, and we will put the voices of carers and care users at the heart of our plans for a National Care Service.’

‘This isn’t about demands, it’s about needs’

According to disability rights campaigner, Sam Carlisle, isolation, little support and a lack of trust in the authorities are key areas impacting parents of disabled children.

‘When your child is diagnosed, that immediately marks you out as different,’ she explains. ‘Friends and family mean well but can withdraw because they don’t know what to say so you are alone. Many disabled children are bussed to school so parents miss out on the school gate community. Just those simple chats can provide comfort. At home, your child’s care is so all-encompassing that there is little opportunity for parents to socialise and your child rarely gets invited to something simple like a birthday party.’

Sam is mum to Elvi, 22, who has a rare genetic condition and learning disabilities which means she will need 24/7 support for life. She knows all too well how overwhelming the day-to-day care combined with the battle for support can become for a parent of a child with complex needs – and why some people might turn to desperate measures.

‘For me, I have my son as well to think of, but it also comes back to who will look after my child if I’m not here,’ Sam continues. ‘When everything feels like a battle with the authorities then how on earth could you trust them to care for your child adequately?’

Sam adds: ‘The Disabled Children’s Partnership Failed and Forgotten Report 2022 revealed that three in four parents have had to give up employment or their whole careers, due to lack of support, while 43% of families with disabled children have waited over a year to get the respite care they deserve. 

‘Given that local authorities have less money these are unlikely to have improved in the last 18 months.’

Other findings of the Disabled Children’s Partnership Failed and Forgotten Report (based on a survey of more than 2,200 parent/carers) found: 

• Seven out of ten parents said their disabled children’s health had deteriorated because of lack of support.

• 3 in 5 parent carers have seen their relationships with friends and family suffer due to lack of support.  

• Over a third (38%) of parents have experienced marriage/relationship breakdown in the last 12 months as a result of lack of support for their disabled child.

• Three quarters of parent carers have seen their emotional or mental health deteriorate because of not getting the right support.  

• Only one in five felt their family received the support needed for their child to fulfil their potential. Half of parents of disabled children are unable to work and have experienced poverty, because of lack of support for their child.

Sam adds: ‘It’s key that we build that trust back up and parents are offered the right support no matter what. This isn’t about demands, it’s about needs – and we need better investment from the government now more than ever.’

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