The NHS was providing continuing health care for Robin Mills, who suffers superficial siderosis, before his wife Kathleen Mills received notice that the care would be stopped in error
The wife of a man whose “brain is dying and body is shutting down” has told how she was informed his daily care from the NHS would be revoked following a care package review.
Robin Mills, 62, from Cheadle Hulme, Greater Manchester, suffers from the degenerative disease superficial siderosis, which has left him deaf and unable to eat, speak and walk, reported the Manchester Evening News.
His condition is thought to have been caused by radiotherapy he received as a child and has become gradually worse throughout his life.
Robin was reportedly recommended for continuing health care by doctors at The Christie cancer specialist hospital back in 2019. NHS continuing health care funds and arranges free social care for patients with long-term complex health needs.
But earlier this month, Robin’s wife Kathleen learned that his care package had been reviewed and was to be revoked. She faced looking after his complex needs alone.
The NHS has now said that it will reinstate the care and claiming an error had been made, due to a Covid backlog pressures, reported the MEN.
Kathleen said the experience left her furious after being told her husband “no longer met the criteria” for continuing care and that it would cease.
The service sees two carers attending Robin each day, one to get him out of bed on a morning, and one to get him ready for bed on an evening. The NHS had determined Robin would benefit from two additional carers visiting him during the middle of the day.
“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,” she said over the prospect that she had been facing without NHS care.
Robin’s superficial siderosis is thought to have been caused by damage done to his brain after receiving radiotherapy in 1970, when he was nine years old, to treat a brain tumour.
The condition, which is a “silent bleed on the brain”, caused Robin to lose his ability to hear, speak, walk and eat.
Kathleen said: “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.
“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.”
On the care being reinstated, Anita Rolfe, deputy place-based lead for Stockport for NHS Greater Manchester Integrated Care, told the Manchester Evening News: “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.
“Continuing health care packages are reviewed on an annual basis to ensure that a person’s care plan remains appropriate to their needs. On occasion, we don’t always make the right assessment and we are continuing to review our processes and support training for our staff to ensure that the right package of care is provided at a time of need.”
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