For their 47 years of marriage, Peter and Linda Wilkins were inseparable. Both born without sight, they met as teenagers at Henshaws school for the blind in Greater Manchester, where they became some of the best braille readers their teachers had produced.
Linda went on to become a professional braille proofreader and Peter a typist, the pair living together in the middle of Stockport. They loved listening to music and delighted in finding mistakes in braille manuscripts. “We’ve always been braille perfectionists. Whenever we read a book and found a mistake we’d tell each other: ‘They’ve not put the quote marks right here,’” said Peter.
But when Linda lost the use of her legs and had to go into hospital and then a care home earlier this year, suddenly the couple were split up. Covid restrictions meant Peter was unable to visit his wife in hospital or in the care home, where the “window visits” on offer were of little use to two blind people, nor the offer of video calling.
Linda died suddenly in her care home on Wednesday and now Peter is speaking out in the hope that “nobody else will be in the same situation as me”.
He wants the government to change the restrictions in England to allow weekly care home visits – and not just at the end of life, as currently permitted.
He also wants relatives to be allowed to make hospital visits, wondering if he would have been able to “advocate” for Linda had he been allowed to see her when she was in hospital, confused and alone.
Linda was born with a spinal condition and three years ago developed rheumatoid arthritis which made it difficult to stand. By March this year she could not walk at all and in July was admitted to Stockport’s Stepping Hill hospital just as the Covid crisis hit the NHS, with all visits banned.
“When she started to not be able to move her legs and I couldn’t help her, and she couldn’t do anything for herself, I had no option but to send her to hospital. I didn’t want to, and she didn’t want to go, but I persuaded her it was the only possibility, with the hope that eventually we would get her back home,” said Peter.
He felt helpless back at the house, unable to grab a doctor on the ward to explain what was going on. He was never able to get to the bottom of whether or not she had internal bleeding, nor the “lumps” found behind her eyes when she had a brain scan.
“When she was in hospital last year I visited her every day and was able to assess her situation. If she had any difficulties or problems I could speak on her behalf,” he said. “If I had visited I wouldn’t have left the hospital without collaring a doctor and finding out what was going on. You can’t do it as easily from home. I could have advocated for her, which I always did through her life anyway.”
In August, she was discharged from hospital into Fernlea, a care home in Hazel Grove, Stockport. Peter has nothing but praise for the care she received there, but he was frustrated at not being able to visit.
An exception was made on 25 August, for the couple’s 47th wedding anniversary. That was the last time he was with Linda. After that, he was offered the chance to stand beneath her window for a visit. “But I wrote to the home and I said I didn’t think that would work on the first floor anyway but blind people [really] wouldn’t be able to cope with it,” he said.
He thinks all care home residents should be allowed one “designated partner” who can visit once or twice a week, in personal protective equipment.
On Thursday he made the case to Andy Burnham on the Greater Manchester mayor’s monthly Radio Manchester phone-in show. The call temporarily silenced Burnham, who said: “If there’s any way we can help you, we will … Health is about more than controlling the virus. We’re in danger of getting into the position where the virus is everything. And it isn’t everything; it is a major concern but it needs to be balanced alongside people’s emotional and mental health, people’s relationships.”
Peter was pleased with Burnham’s response but remains sad at how Linda died without him, aged 69.
“It would have been nice to visit her. I can’t fault the home. They were doing what they had to do,” he said. “But I am talking out because I would like something to be put in place so that nobody else will be in the same situation as me over the last three months, when I couldn’t be with Linda in her time of need.”