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Paul Laxton
This is the full version of an edited letter that appeared in the Daily Mail on 5 August 2021.
Subsequently I was interviewed by the Daily Telegraph. 
Extracts from that interview appeared in the Daily Telegraph online and can be found by googling 'Paul Laxton Daily Telegraph'.

COVID AND THE SHEER CRUELTY INFLICTED ON THE TERMINALLY ILL-Paul Laxton

My late wife, Leonore, usually known as Lennie, was diagnosed with Motor Neurone Disease in June 2020.

MND is a death sentence, there is no reprieve. After her diagnosis the NHS swung into action. The local MND team gave us fantastic support and provided any amount of free equipment to help my wife cope with increasing disability. The only item we had to pay for out of own pockets was the stair lift. When she had deteriorated sufficiently to be eligible for Attendance Allowance, it was paid swiftly and at the higher rate. After all those years of paying in, the NHS paid out as promised.

Our problems began eleven months later when the inevitable happened and my wife was taken to Huddersfield Royal Infirmary on Saturday 15 May after a fall. Covid rules dictated that I could not accompany her in the ambulance. When I was advised that she was being kept in, I was allowed to drop off some personal effects like her I-pad and phone at the door of the acute ward. I was not allowed in to see her. By the following Thursday she was terribly distressed and I was granted a one hour visit.

Denied a visit at weekend I was offered a virtual visit. I'm loathe to criticise ward staff most of whom were fantastic, but the virtual visit was a farce. The disease had reduced her voice to a husk, and she was finding it difficult to grip. The result was that she dropped the tablet several times during the visit, struggled to pick it up, and was frequently too far from the microphone to be heard.

Myself and her best friend Sharon were in despair. Where was there a nurse to hold the tablet for her? It just felt as though this was a half hour where Lennie could be safely ignored. Needless to say this was the last time we bothered with the virtual visit. It was also the last time she ever spoke to her best friend, because her only permitted visitor was me. Her son Simon, who wanted to end their estrangement, was never able to do so before his mother died.

After the weekend Lennie was transferred to Calderdale Royal at Halifax to the specialist respiratory ward. Although I knew a transfer was upcoming, no one bothered to tell me that she had gone. The plan was that she would return to Huddersfield for the day on Thursday 27 May to have the food pipe, known as a 'PEG', inserted. I rang up about visits and was told I was allowed one after 14 days. I pointed out that this was the same allowance as a convicted paedophile in one of Her Majesty's prisons.

Despite the audible embarrassment at the other end, they were unmoved. I did get to see Lennie before Saturday but only because there were complications with the PEG insertion and they thought she might die. When Lennie was eventually found a bed in ICU, I was forced to leave. She survived but her ability to use her fingers had gone and there were no more texts and phone calls. After being transferred back to Halifax I was allowed to visit on the Saturday. At least I could then read texts from her friends and send replies on her behalf. I asked when I could next visit. The response was in 7 days time. Unimaginably cruel. My wife was being devastated by MND but had all her mental faculties. I can only guess what was going on inside her head; unable to communicate with family and friends let alone have a visit.

As it turned out I was there the next day; twice. I was called out during the day and then again during the night as they thought Lennie might not make it. Both times she rallied. Lennie had been put on a ventilator during her stay in the ICU, which I knew was a bad sign. I was forced to wear full PPE on my visits that day. With a goldfish bowl round my head and a device around my waist which noisily pumped air into the bowl I could not hear a thing when she tried to speak to me. We were reduced to getting her to point to letters on a card to find out what she wanted to say. I could get no sense as to who this was supposed to protect as both of us were double vaccinated, as were the nurses.

Not until the next Thursday was I allowed another visit. I made it clear I was not prepared to wear an outfit that rendered communication impossible. After a stand-off I threatened to contact the Daily Mail. They relented and I was allowed to wear the same kit as the nurses; airtight mask, plastic screen, gown and gloves. At least it was possible to communicate. That Thursday, 3 June, someone finally found their inner humanity, and I was allowed daily one hour visits, and a blind eye was turned to me exceeding that.

Nevertheless, the essential cruelty of the system remained. No one else was allowed to visit. After entering hospital, other than the staff, Lennie saw no one but me. She was a gregarious woman with plenty of friends. Lennie knew her time was short and wanted to say goodbye. On two occasions I suggested transfer to a hospice where at least she could have the comfort of visits. Each time I was told it was impossible because she needed periodic ventilation. Don't terminal cancer and COPD patients in hospice care need ventilation? I just felt I was being fobbed off. She grew very distressed.

In her final days Lennie was desperate to come home to die. It was always going to be difficult as her care needs were inevitably going to be very complex and would take some organising. It did not help that during her stay in hospital no assessment had been made of what mobility remained. For a few days it seemed as though Lennie might come home as she rallied, but there was a further setback on Sunday 13 June, as attempts to wean her off the non-invasive ventilator seemed to be failing. I saw the consultant on the following day. He said Lennie had no more than weeks to live, and he would get the Discharge Co-ordinator on the case.

On Tuesday 15 June I arrived for my visit and was told that the Discharge Co-ordinator was on her way to see me. I never did see the Discharge Co-ordinator. Lennie died within minutes of me entering her room. It was as though she had waited for me and that was a great consolation. My great fear was that she would die alone as so many did during the pandemic. There may be consolation for me, but none whatsoever for her son and her many friends. As for Lennie she had to endure hours alone with her thoughts and fears, utterly bereft. She was terrified and told me so. I would have happily organised visitors in relays. I would have happily paid for Covid tests if that's what it had taken. Individual doctors and nurses were magnificent. It's the inhumane, backside covering NHS bureaucracy that's rotten.

The final indignity came with the funeral. Less than 24 hours after the European Championship final was watched live by 60,000 people, just 24 mourners were allowed into Huddersfield crematorium. I had to ask some of them to attend without their spouses just to get the numbers down.

I can come to terms with my wife's death. I don't believe that I'll ever come to terms with the official cruelties that were inflicted.

PAUL LAXTON

Issue 85 Autumn 2021