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Thursday, June 13, 2024
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Locked down and shamefully neglected by the NHS – the heartbreaking diary of my parents’ last days

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OUR government forced us into lockdowns and commentators espoused restrictions declaring ‘one life lost is one too many’ seemingly without any thought as to the quality of the lives they were trying to preserve. This is a short account of how my parents’ final years were diminished by the NHS that was meant to serve them.

Dad

Aged 90, he had worked since 13 mostly as a lorry driver and later as a union official, paid lifelong taxes and worked hard to improve the conditions of his workmates.

In April 2020 he collapsed at home with heart problems and was taken to the local hospital, which was in strict lockdown, so he disappeared within. Having no mobile phone and no knowledge of emails, being partially deaf and partially blind, he had no way of contacting us and couldn’t make out most of what the masked staff were saying to him. We eventually found out which ward he was in, phoned daily and received terse and robotic reports on his condition. Mostly ‘comfortable’ (whatever that means).

My father learned he had terminal cancer. They didn’t tell him: he overheard some of the consultant’s discussion after being asked to sign a DNR form, which he declined. Faced with dying alone and apart from my mother, his wife of 65 years, he discharged himself (after an enormous row) and was brought home.

He told us that he had not eaten in the three days at the hospital. He had fallen from his bed during the night while trying to go to the toilet; the nurses had turned off the alarm he kept using because they were trying to sleep in the half-empty ward. To prevent him disturbing them, they eventually placed him in a wheelchair near a toilet in an empty ward where they left him for ten hours.

At home the care was pushed on to my 86-year-old mother. Family visited and helped but we were under constant surveillance from the lockdown-fanatic neighbours who were curtain-twitching and counting visitors. Friends waved through masks and double glazing from the front garden.

Slowly the care services did their stuff. A bed was brought for downstairs, there were daily visits from overworked nurses. The GP refused to visit. I eventually obtained a letter with Dad’s diagnoses and phoned the GP to discuss. He was annoyed that my father had ‘pushed himself on to my budget’. I explained that although we were grateful for the nurse visits, my father was dying in front of us and needed a proper assessment. He said he was not doing home visits due to Covid and said he would get a nurse to visit. I asked if the nurse was somehow immune or expendable. This did not go down well.

The GP suggested that if my father’s condition became untenable, we should call 999. I explained that there was no way that my father would return to the same hospital. The GP said that’s easy, when the ambulance arrived just ask to be taken to another hospital. (I later found out this was a complete fiction to get me off the phone.)

We had five weeks of Dad’s condition worsening. My mother deteriorated through exhaustion. My father told me that if they were going to take him back to that hospital, he wanted me to promise that I would ‘smother him with a pillow’.

I woke one morning to a call from my mother to say she had given up and had him taken to hospital. When she asked the paramedics to take him to a different hospital, as the GP advised, they laughed and explained it never works like that. But they were good enough to pretend to my father that he was going somewhere else. I rushed to the hospital but was refused entry and ended up waving to my mother from the car park (at least she was allowed in).

The next morning my mother rang in tears and said Dad had only hours to live and under those circumstances the ward would allow me to visit. I rushed there with my family but could not get past the masked security guard. He rang the ward who said they would not relax the no-visitor rule. He called for back-up to have me evicted. He had already evicted and banned my sister for trying to enter. Again, I ended up waving to my tearful mother at a third-floor window.

My father survived the day and very early the next I headed to the hospital. My mother called to say he wouldn’t last the day and they definitely would allow me in. I arrived and the masked guard denied me entry. I asked him to call the ward, but he refused. I implored, explained and begged. The guard said he wouldn’t talk to me unless I was wearing a mask. I put a mask on and pleaded. He then said he couldn’t make out was I was saying because of my mask. Incensed by his officiousness and cruelty, I got extremely angry and was ushered away by my family. We went to the rear of the hospital, and I found a way in while my wife created a diversion. I walked through empty corridors and deserted wards until I found my father’s room. His dead body was covered by my weeping mother.

Mum

My mother, encouraged by my father (who was always convinced he would ‘go first’), had built up many hobbies and friends. Late in life she had joined the Open University and gained a BA. Now in lockdown and mourning my father, all social activities, all hobbies, and friends’ visits stopped. She was left alone in an empty, silent house trying to fill her time doing puzzle books.

The occasional masked friend waved through the front window. Apart from one angel of a neighbour and visits from my sister and myself, she saw no one. She became increasingly isolated and immobile because of  inactivity and sicker due to lack of sunshine, fresh air, and loss of appetite. Despite her many comorbidities she survived a dose of Covid.

Gradually lockdowns eased but it took a longer time for her friends to be confident to visit. She suffered significant vaccine side-effects including severe recurrence of painful rheumatoid arthritis (RA). She vowed not to have the booster because of how terrible the first jab had had made her feel but nurses walked into her front room uninvited and injected her. The side-effects erupted again.

Her GP (the same one as my father) had previously prescribed long-term doses of methotrexate for her RA. Although he wouldn’t visit, or see my mother at the surgery, he started the doses again. My mother developed painful sores on her legs; as they worsened the GP refused to see her but sent nurses. They bandaged and that was all. I wrote to the GP using my mother’s email address pretending to be her, pleading for a diagnosis and home visit, but this was refused as she was being visited by the care workers.

Her conditioned worsened, the sores almost down to the bone. The nurses continued to bandage, and her GP refused my entreaties to visit, saying just call 999. Eventually we did that. In A&E they diagnosed that the methotrexate had destroyed her immune system and said she wouldn’t last the night. We sat in A&E and at midnight, being still alive, she was admitted to a ward. This was Thursday before the August Bank Holiday. It was explained that there would be no consultant until the Tuesday after the bank holiday, but they had now decided to treat her and try to restore her immune system. Then followed days of agony as she couldn’t drink and cried out day and night for water.

On the Tuesday the consultant arrived, authorised oxycodone and she peacefully passed away within 48 hours. Were they really trying to ‘cure’ her or was it that she just suffered while they hung on over the bank holiday?

The consultant diagnosed ‘methotrexate induced neutropenia’, which could be interpreted that her GP had overprescribed a drug that had destroyed her immune system. Weeks later the death certificate listed ‘sepsis’ as the cause of death. When I queried this, the registrar asked if I really wanted to delay Mum’s funeral with a post-mortem. Later the consultant said they wouldn’t allow her original diagnosis on the certificate.

At least we were able to have a proper funeral, not like the restricted socially distanced one we had for my father.

The conclusions are:

A safe, socially distanced life may be OK for some but not if it is 100 per cent of your time left on this Earth.

Our NHS is there to largely to serve itself, not those who fought for its existence and who have funded it for most of their lives.

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Duncan Scillitoe
Duncan Scillitoe
I'm 64 and a senior manager in the transport sector. I am married with two grown-up boys and live in North London.

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