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Wales Online
Helena Vesty & Nisha Mal

'His brain is dying' Man who can't eat, speak or walk told daily care would be revoked by NHS

The wife of a man who can't eat, speak or walk due to treatment he had as a child has been told his daily care will be revoked by the NHS. Robin Mills has a degenerative disease.

The 64-year-old is also deaf, as well as not being able to speak or walk because of NHS radiotherapy he had when he was young, says his devastated wife. He was recommended for continuing health care by doctors at The Christie cancer specialist hospital in 2019, according to medical notes seen by the Manchester Evening News.

Patients with long-term complex health needs qualify for free social care arranged and funded solely by the NHS, known as NHS continuing health care.

In January, Robin’s condition began rapidly spiralling and he was granted the free care. But earlier this month, wife Kathleen was shocked to learn his care package had been reviewed and was to be revoked, leaving her facing the nightmare of looking after his complex needs alone.

Two weeks later, when the Manchester Evening News approached the NHS following Kathleen's cries for help, the service reinstated the care, claiming an 'error' had been made. The 'error' is a symptom of backlog pressures on the NHS in the wake of the Covid-19 pandemic, health chiefs said in an email seen by the Manchester Evening News.

But Kathleen says she has been left furious by the error, after she was initially told on October 13 her husband ‘no longer met the criteria’ for continuing care and that it would cease. “His brain is dying, his body is shutting down. I daren’t tell him that we’ve got no care. I’ll have to clean him, change his nappies, change his clothes, everything.

Robin cannot eat on his own (Mills family)

“The man has got nothing through a silent bleed on his brain that came from radiotherapy given by the NHS. He’s not dead yet, but you might as well call him dead.

“I’m not leaving him in bed for another six months. We shouldn’t have to live like this. This illness has taken everything from him already.”

Robin, who worked kitchen jobs throughout his life, now has a rare condition called superficial siderosis - thought by his medics to come from the damage done to his brain from radiotherapy. Robin had a brain tumour at just nine-years-old and went through radiotherapy treatment which was carried out by the NHS, says his family.

The superficial siderosis is a ‘silent bleed on the brain’. Over the years, Robin has lost the ability to hear, speak, walk and eat. He is ‘dead but still alive’, says Kathleen.

“In 1970, aged nine, he had a tumour on the back of his brain,” explained Kathleen, who lives in Cheadle Hulme with her husband. “At the time, he was the youngest child in England to have such a tumour removed.

“He was told his hearing would probably start to go because of where the doctors removed the tumour from.

“In 2008, his balance was becoming very bad. One day he went to bed, never to hear and speak again.”

“It’s a silent bleed on the brain, it’s bleeding constantly giving out too much iron to the body. He is bedridden, he can’t lift his head up properly,” continued Kathleen.

“He has almost died a few times, it’s a cruel illness. In January, we almost lost him again to pneumonia. Because he was dying, he qualified for free continuous care."

At first, the continuous carers came to visit in the morning to get Robin up, then again to get him ready for bed. Kathleen says that the NHS determined he would need more help and provided another two carers for the middle of the day, which became much-needed respite for her.

“We’ve had a hoist for the last few weeks and it's been the first time we’ve been able to get Robin sitting up in his chair by the window, you can’t use it without people who are trained. It’s the happiest he’s been in years,” Kathleen told the Manchester Evening News .

The couple, who live in Cheadle Hulme, met in 2010 at a craft class she used to help out with for the deaf and blind. They have been married nine years, and Robin was already deaf and deteriorating quickly, but could still walk with two walking sticks. He used a machine to take his vows on his wedding day.

Kathleen said that she would have been forced to use the hoist herself had the care not been reinstated just to give Robin some joy in his final stage of life. The devastated wife was left desperate to get the care reinstated, contacting the M.E.N., her MP and local councillors.

The Manchester Evening News approached the Greater Manchester Integrated Care Board, which takes responsibility for commissioning the continuing care. The next day, Kathleen says she was informed in an email from the NHS that the decision was made in ‘error’, as a result of ‘pressures’ the continuing health care team face following the pandemic, and changes to the way the NHS runs.

“There had been an error made by the staff member progressing the case,” read the email, seen by the M.E.N. “The situation has been resolved with continuing health care (CHC) being reinstated as soon as the error came to light.

“The person receiving care will experience no interruption in the care they have received, and the CHC team have apologised for the distress caused. Generally the CHC team provide an excellent service, and the error is a symptom of the pressures that the team are under whilst trying to manage business as usual, as well as recover the backlog from the pandemic in the context of the NHS ICS transformation programme.”

But Kathleen says the last two weeks 'have been so hard'.

“I know I shouldn't have been using the electric hoist on my own, but I've managed because Robin wasn't being left another six months in bed - after he was only just able to get out of bed as the CHC got everything in place for him. And then stopped everything.”

Anita Rolfe, deputy place-based lead for Stockport for NHS Greater Manchester Integrated Care, told the M.E.N.: “I am pleased that we have been able to reinstate Mr Mill’s continuing health care package in full and are sorry for the distress caused when this was briefly inadvertently removed. We have been in touch with Mr Mill’s family, spoken through what happened and provided an update on his care package.

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