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The father of a woman with severe epilepsy and disabilities has revealed how family carers providing around-the clock support for loved ones are being driven to exhaustion and burn out.
John Glover and his wife Freda are carers for Vicki, 34, who has a rare and severe form of epilepsy, is non-verbal, has a learning disability and uses a wheelchair.
Mr Glover, 56, who lives in Jarrow, South Tyneside, told i that Vicki has no sense of danger and must be monitored at all times, with he and his wife even taking shifts to sleep during the night to make sure one of them is awake to look after their daughter.
The physical and mental demands of providing 24/7 care for Vicki is taking its toll on them, Mr Glover said, as he revealed he even had to miss his other daughter’s wedding in Rome because there was no respite available.
It comes as new research shows that family carers spend more hours than an average full-time job each week providing care to loved ones – with charities warning the cost of living crisis and pandemic have exacerbated issues.
Until 2020, the family had a full week of respite care a year and 52 nights throughout the year, which gave her some respite away from caring for Vicki. However, since the pandemic, the respite care has been halted and Mr Glover said this has had a dramatic impact on their family.
“In a nutshell, we don’t have a life anymore,” he said. “Caring for Vicki is physically and mentally exhausting and everything we do is planned around Vicki’s needs.
“Seizures could strike at any time as part of her condition and she doesn’t understand danger at all so even though she can walk, she is in a wheelchair when we are out primarily as otherwise she would just run into the road.
“My other daughter went to Rome to get married, but we had to miss the whole wedding because Vicki wouldn’t be able to get on a plane and there was no respite care available.”
Charity Sense, which supports people with complex disabilities, said the pandemic and cost of living crisis have increased the pressure family carers of disabled people are facing.
Their research shows that on average, family carers spend more than 42 hours a week providing care to their loved ones – more than a full-time job.
Almost a third spend more than 48 hours providing care, while one in six (17 per cent) said they spend more than 72 hours a week providing care.
One in five carers told researchers they couldn’t remember the last time they had a break.
Respite care services varies across the country and many families say services paused during the pandemic have not resumed.
Some carers cited affordability as a barrier preventing them accessing respite services, as well as long waiting lists to access support.
Mr Glover told i: “We just have to get on with it and care for Vicki ourselves as we have no choice. Even during the night, we have to take shifts sleeping so one of us is awake for Vicki. My wife will be drawing her pension later this year and being up during the night isn’t something a pensioner should be having to do.
“When we had respite, we could go away on holiday and recharge. Without this support, we’ve had no social life for the past four years.
“We need something to give us that free time for a bit of a rest and a lie-in and to catch up on all the jobs we can’t get done during an average day.”
He added: “Some of the places where you can put people in for respite are not fit for purpose as they are staffed by people who are forced off the unemployment register to go to work, which is something I personally feel we should never do.
“Caring is something people must want to do rather than being told they need to do such a demanding job as otherwise they won’t get any money.
“We are not alone in caring for a disabled loved one without getting a break. There are so many people all over the country who are caring 24/7 and getting no help from the system.”
Sense believes the needs of families are being neglected and is calling on the Government to commit to long term funding for specialist respite services.
Richard Kramer, chief executive of Sense, said: “Caring for someone with complex disabilities is often demanding, non-stop work and takes its toll physically and mentally.
“Yet sadly, family carers across the country are missing out on being able to take a meaningful break from these responsibilities and denied the chance to rest and recuperate, reconnect with family and friends or take part in other activities.
“The pandemic and now the cost of living crisis has made the situation worse, with carers taking on even greater caring responsibilities and receiving less support, with their health and well being suffering as a result. Many are simply burnt out.
“We need to how that we value these incredible individuals in our communities. Local and national government must commit long term resource and funding to support families.”
A spokesperson for the Department of Health and Social Care, said: “We’ve earmarked £327m through our Better Care Fund this year to support local authorities with health and care services, including providing carers with advice, support and short breaks and respite services.
“We continue to provide financial support to unpaid carers through the carer’s allowance and we are finalising plans for how we deliver up to an additional £25m to support carers.”