‘I was at breaking point’: Carer highlights NHS failings after nursing dying ex-husband
Diane Edwards is exhausted and in mourning. She has agreed to speak to Sky News just 10 days after her ex-husband’s death.
She stands in the bathroom where they would spend hours through the night together as he battled stage 4 terminal bowel cancer.
“Sometimes I’d put him back into bed and the blood would be pouring out,” she says.
“It’s horrific. It isn’t the same person you knew or you were married to. They’re not the same people.”
Mick was blind and needed assistance moving around his home. He had been suffering for months and opportunities to diagnose his condition were missed.
After he was told he had cancer, carers and charity support staff would visit to help the family during the day but Diane says they were insufficient and lacked the medical training needed.
“They weren’t medical carers. He deteriorated even more and I was on my knees, I was at breaking point.
“The tears were rolling down my cheek, sometimes I didn’t know I was crying. I was worn out and I thought ‘if I don’t do something about myself, I’m going to end up in hospital’. I never slept. Your body gets used to no sleep.”
Mick Edwards
One year ago, complications in Mick’s condition meant he required hospital treatment.
This time he was discharged with a fast-track care package known as NHS Continuing Healthcare or CHC. It’s funded by the NHS for people assessed as having health and social care needs caused by a medical issue.
Around 12 weeks after leaving hospital, Mick was remotely assessed online by NHS Shropshire, Telford and Wrekin, which found he needed social care instead of palliative care.
Diane says Mick didn’t have any family present at this meeting, only staff from a care home who were now looking after him.
It left the family worried they would have to sell his home to pay for the palliative care they believed he needed.
“Mick couldn’t cope with a video link,” Diane says. “He’d lost his confidence, he’d had falls, he was deteriorating, so he couldn’t have coped.
“I had to tell Mick he’d lost his funding. He got upset over it. He didn’t eat for a day because of it. It’s hard, there’s nothing out there for you for help, there’s no backup, I wish there was.”
Diane and Mick Edwards on their wedding day
The Shropshire, Telford and Wrekin NHS Trust offered its sympathies and condolences to Mick’s family, telling Sky News its assessments are carried out in line with the national framework, which allows providers to use a number of approaches including face-to-face or video-teleconferencing.
The assessment teams recommend whether patients have an unmet health need over and above what a local authority can provide. Every individual has the right to appeal, the trust says.
The national framework also says it is best practice for assessors to meet with the individual being assessed and that there are concerns such CHC assessments can be a postcode lottery.
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Research by the Nuffield Trust thinktank found that nationally between January and March of this year, only around a fifth of people who underwent a CHC assessment were eligible and that approvals varied widely, from over 40% in Leicestershire to just 7.3% in Gloucestershire.
Nuffield Trust fellow Rachel Hutchings and her team acknowledge there is little public understanding around the CHC process and that there can be many complex reasons contributing to the disparities, such as the demographics of the population served by the respective trusts.
But she says the inconsistencies in how funding is allocated and assessed are a concern.
She told Sky News: “There are a lot of pressures within the social care system more generally, we know that long-term reform is definitely needed, but so far we’ve had very little progress on that, but in the short-term there’s a real urgent crisis facing social care as well and we see a lot of these challenges kind of exemplified within CHC.”
Rachel Hutchings from Nuffield Trust
NHS England told Sky News that “anyone eligible for continuing healthcare should receive a package of support that is tailored to their individual needs and preferences”.
It continued: “The process of assessment for continuing healthcare and decision-making should also be centred around the individual, taking into account their needs, or their representative’s view where appropriate, and they should be empowered and assisted to participate.”
Mick’s CHC funding was eventually reinstated six weeks later after a social worker and a local GP intervened.
But Diane says she believes her ex-husband’s final days are indicative of how patients nearing the end of life are treated and that Mick would have opted for assisted dying had it been available.
An amber warning has been issued for snow in a part of the UK, likely to cause travel delays and “stranding some vehicles and passengers”.
The warning, which covers south west England, also warns some rural communities could become cut off and is in place until 2pm this evening.
Pic: Met Office
There is also a yellow weather warning for snow covering the southern counties of England until midnight on Wednesday.
The warning stretches from Kent to Cornwall and up to south London and the Met Office said between 2cm and 5cm of snow could accumulate fairly widely, with as much as 10cm over higher ground.
This week is expected to see the coldest nights of the year, with temperatures potentially reaching -14C on Wednesday night and -16C on Thursday night, both in the North East of England and Scotland, the Met Office said.
Weather warnings issued on Tuesday for snow and ice covering the parts of Wales, the North West of England, west and northern parts of Scotland as well as Northern Ireland will remain in place until midnight tomorrow.
The forecaster said some roads and railways are likely to be affected and there could be icy patches on untreated roads.
Pics: AP
Meanwhile the Environment Agency has said at least 300 properties have flooded across England since New Year’s Eve. It estimates more than 41,000 properties have been protected.
Heavy rainfall over the New Year caused significant river and surface water flooding across the North West of England and Yorkshire and snowmelt has brought further disruption to parts of England, particularly the Midlands, the agency said.
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Floods minister Emma Hardy said: “My sympathies go out to the people, businesses and communities impacted by the recent flooding across the country.
“I want to express my heartfelt thanks for the vital work that the Environment Agency and emergency services are doing to keep people safe. People must continue to follow their advice and sign up for flood warnings.”
Flood warnings
Some 100 flood warnings were in force across England on Wednesday, with people urged to remain vigilant over the coming days.
A danger-to-life warning was issued on Tuesday morning for the River Soar near Barrow upon Soar, Leicestershire, but was later removed.
People living in caravan parks in the area were urged by the Environment Agency to act, with a large-scale evacuation needed to save lives.
Firefighters have rescued dozens of people across Leicestershire since Monday, Leicestershire Fire and Rescue Service said.
Hundreds of schools were closed across the UK, with road and rail links blocked, as Manchester, Bristol and Liverpool John Lennon airports suspended flights because of the conditions.
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