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.”
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.”
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.”
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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.
