My Covid Experience

HC-Worker

I’m from the UK and was a Paediatric Complex Care Nurse for over 15 years.

Then Covid arrived. 

Like many healthcare professionals in the UK, we were redeployed to help in the places that needed it. Psychologists and dentists were sent to the ICU. 

40 out of 60 of me and my colleagues were sent to care for adults dying from COVID-19. 

I didn’t mind and was glad to help. The management team from my usual nursing job promised to take care of us and visit every week.

We were supposed to be extra pairs of hands and not counted as nurses as we were children’s nurses.

In the beginning, things weren’t that bad. We did our best and followed the staff who worked there usually. Slowly, things got worse. We were a place for the hospital to send people they couldn’t save to die. At first, relatives and family were allowed to be with dying people. Then, only two members were permitted. I remember when this was reduced to one member. These rules were made by the government and sent via public health. There was a woman in her 30s dying of cancer. Her husband and child had been with her for weeks. They didn’t have Covid, but we had to tell them either the child or the husband had to go. The child was sent crying to stay with his Grandparents. I went and hid in a laundry cupboard and cried.

Soon, the number of people arriving got faster. As soon as someone died, another would arrive.

Sometimes, five people die in your shift. 

I remember a lady in her 30s arriving and chatting to me while I unpacked her bag. I offered her a cup of tea and went to get it for her. When I returned, she was dead, still sitting up in bed. I’d only been 4 or 5 minutes.

Soon, no visitors or family members were allowed, and this is what traumatized the medical staff. People were dying with no family with them. So, we had to video call husbands, daughters, and siblings when people died. I remember a man standing out in the garden looking through the window when his Mum was dying.

Each patient was in their own room, and we had to wear full PPE before entering. We would try our best to get to each person to be with them when they were dying, but it was impossible.

When we rang the family to tell them their loved one had died, they always asked if we were with them and if they hadn’t been alone. We always said we had been with them: a lie, but a kind lie.

Every night, Boris Johnson would address the nation on television with a different person. He would announce how many people had Covid and how many had died in the last 24 hours. In those first few months, when Covid was at its most deadly and contagious, the death toll was in the thousands.

One evening, Boris gave the awful amount of COVID deaths for that day; a journalist happened to ask if that number was just those who died in hospitals or included deaths in hospices, care homes, nursing homes or people dying in their own homes. Boris appeared confused and answered this was just people who had died in hospital. It hadn’t occurred to him that people were dying in the community. This was months into the pandemic, so the true death count was way under-recorded.

After no families were allowed to see their loved ones, the funerals were stopped, and I thought this was the final descent into inhumanity and hell.

I recall a lady coming from the hospital alone and dying with us. She’d been in hospital for a few weeks without her husband being able to visit her. She’d died without him in the hospice.

The cold room, usually having one deceased person inside, regularly had 5 or 6 people waiting to be collected by funeral directors.

We rang the lady’s husband to inform him his wife had died. He was told the funeral directors would collect her from us and take her to the crematorium in the next week or so to be cremated. When ready, a person from the crematorium would call him so he could collect his wife’s ashes through a hatch in the door. Because he hadn’t seen her for weeks or been with her when she died, he was haunted that she hadn’t died, and the ashes weren’t hers.

Soon, staff got sick, and shifts got busier. By now, I was being counted as a nurse and working outside of my skill set. I rang my union, who said the usual rules had been changed. As these were extraordinary circumstances like being at war, our nursing registration was expanded to allow us to work where needed. Our management team had visited two or three times, but not recently. I rang my manager to tell them we were working outside of our training and to describe how harrowing it was. She was dismissive and replied it was tough for everyone. 

We were wearing the brightly coloured scrubs we wore at the children’s workplace, which featured Disney characters. It is entirely inappropriate for adult palliative care. We were also told to wash them at home. This was a huge infection control hazard. We wore our clothes to work, changed into scrubs, and changed back into our clothes before going home at the end of the day. 

My colleague’s husband had cancer and was having chemotherapy, so he and their teenage son lived downstairs, and she lived upstairs to try and avoid giving him COVID-19. They did this for a year, and her husband survived.

Another colleague would go home, walk around the back of her house, take her clothes off in the garden, enter the house, and get straight into the shower. 

We were lucky as we did not run out of PPE as some London hospitals did, leaving them without and forced to use rubbish and body bags. 

One day, a funeral director waiting outside met me at the doorway and commented on my PPE. He said his was better quality, and his patients were not breathing on him. When he’d collected his person, he said goodbye, saying he’d left me a present in the garden. I found several sets of his superior PPE.

Upon returning home from work, my partner noticed how withdrawn and exhausted I was. All I did was sleep and go to work. I didn’t speak of what I saw at work because it was too horrific. 

Around this time, we were offered training to certify a death, something a Dr would usually do. But they were busy trying to save people dying from Covid. No postmortem was being done either, unless murder was suspected.

The management advised us that people with pre-existing conditions, such as cancer, COPD, MS, etc., who died with us from COVID-19 should have their original condition stated as the cause of death in our clinical notes instead of COVID-19. I declined. Not only was this untrue, but it was not my place to decide on the cause of death to reduce the COVID-19 death toll in the UK.

I remember my last shift at the hospice; it was a night shift, and COVID was at its absolute deadliest. I arrived for work and found another nurse and a health care assistant to care for 20 patients for 12 hours. I was allocated half of the patients; the other nurse took the other 10, with the healthcare assistant running up and down helping both of us. Three of my patients were at the end of their lives and required palliative care. This would usually be given by one-to-one nursing care, with additional support from other nurses and a doctor on call. We were told that our PPE was only guaranteed for 15 minutes, so we were not to exceed this when with patients. As you can imagine, this is not long enough to give adequate care to anyone. I started with a man who was thought to be closest to death and, gave him some medication via an injection and sat with him. He thought I was his wife, and I didn’t correct him. He tried pulling my glove off to hold my hand, but I had to stop him. The other nurse knocked at the door to tell me to come out as I was over 15 minutes. But I refused and stayed with him until he died. I then quickly removed the old PPE, washed it, and donned a new PPE to see the next patient needing palliative care.  Unfortunately, they had already died alone. My kindness in staying with the last man had cost my other patient. 

I hurried and prepared for my third dying patient, and she was still alive.  As with some dying people who have been asleep or unconscious for several days, she woke up and was quite lucid. She was a lady in her 60s with five grown-up daughters who she had not been allowed to see. She thought I was her youngest daughter, and again, I didn’t correct her. My presence comforted her, and she chatted to me as she would with her daughter. Again, I was over my 15 minutes, but I recognised her slowing down and nearing death.

By this point, I was exhausted but utterly traumatized by everything I’d seen and done.

I have little memory of anything outside of work, and my partner reported me being like a zombie. I genuinely thought this was the end of the world, and I thought Covid would eventually kill us all.

The lady suddenly asked me: ‘Come and give your old Mum a hug,’ something my mother used to say. For some reason, I leaned forward and hugged her. She moved my mask slightly and kissed me on the cheek. She died peacefully soon after. I remember thinking clearly that I would probably get Covid now and could die. I genuinely didn’t care if I did die, as at least I wouldn’t have to come back here anymore. 

I did indeed contract COVID-19; who knows from that lady or from constant exposure to COVID-19 patients? It doesn’t matter.

I fell ill the next day, and there were no tests in April 2020. I rang the COVID hotline for Health care workers working with COVID patients, thinking they had COVID-19. I had seven symptoms on the Covid list and was told to isolate for two weeks and inform my employer.

My first symptom was realising I had no sense of smell or taste. I never developed a cough or cold-like symptoms but had sky-high temperatures and terrible body pain. I was quite delirious at times and cried from the body pain. My skin, teeth, and even my hair hurt me.

My partner became sick two days later with different symptoms from me. He had a terrible cough, runny nose, breathlessness, loss of smell and no temperature or body pain.

It was so strange we had different symptoms, yet I had given it to him. 

My partner was much sicker than me with his respiratory problems. One night, he was struggling to breathe on one side of his chest and asked me to call him an ambulance.

I refused as I knew he would probably lay on a trolley in a hospital corridor and die alone. I thought he had a better chance with me at home as I was feeling a bit better.

It was the right decision, and he made a full recovery. We were both acutely ill for two and a half weeks, and both of us were fit and well people before Covid. I was 44, and he was 55.

Unfortunately, I have no information after recovering from Covid. I have no memory for nine months after getting better from Covid.

During this time, I returned to work, and my original employer recalled me to my usual job with children. Those of us who had caught COVID-19 were asked to take a blood test to look for antibodies proving we had contracted COVID-19. My test showed this, and apparently, I went back to work with the children.

My partner says I suffered from panic attacks, very low mental health, anxiety, guilt, loss of confidence and erratic mood swings.

My nursing union and a charity offered me some counselling, which I accepted. This was after my memory loss and was done online due to lockdown rules. I was grateful, but I don’t think it helped as it was probably too soon and done online.

My employer offered nothing.

My memory is patchy of this time, but I was diagnosed with Long Covid and PTSD. I was often off work with mental health problems and, reading emails from this time, was encouraged to leave. I took a management role in an office and did well at first. After a year, the fatigue started to get worse. I felt exhausted, depressed, guilty, tearful, angry and confused.

The revelations of the government having parties and not adhering to lockdown rules devastated me. It was so unbelievably offensive to me and other healthcare professionals. We’d stuck to these rules even though we disagreed with them and people suffered from them. The idea people in parliament were having gatherings and parties and rarely wearing masks while people died alone and were denied funerals was catastrophic for me. I felt like a fool, like MPs were laughing at me and my colleagues. Their disgusting behaviour was just as horrific as the things I’d had to do at work. I was distressed and couldn’t cope. The later reports of PPE deals and people making money out of death just added to my mental health.

I eventually resigned from the management job, realising I was very unwell. My GP signed me off as unfit for work in 2023. 

As I had a mortgage for my house and no income, I had to sell my home. We lived in a motorhome until April this year, when I rented a property using the money I got from selling my house. At the end of 2023, I noticed my health was deteriorating. My memory was very poor, and I couldn’t remember things once they were two months old. I began to sleep all the time, neglecting my dog, partner and myself. 

My sense of smell and taste had never really returned. I have a small amount of taste and no sense of smell. I used to love food, eating, cooking, and going out to restaurants. But I rarely felt hungry, so I stopped cooking. I lost interest in life. I only wanted to sleep.

I developed body jerks, body pain and stiffness, severe confusion, and inability to carry out basic tasks such as paying bills, booking appointments, remembering to do things, etc.

Sadly, my relationship broke down, and we split. We have remained friends, and if I were well, we would have got back together.

Currently, in September 2024, I have got worse and can no longer live alone. I have very little energy and rarely leave the house. I cannot cook, clean, or do basic things, and I only manage to shower once a week. My memory loss has caused me to forget my dad was dead, my friends’ names and my partner’s surname. I accidentally left the gas on, filling the house with gas and almost causing it to blow up. I couldn’t smell the gas.

 I had a nurse friend who lived with me until recently and looked after me. But he got a job and had to move out. My ex-partner now cares for me and our dog. 

I applied for disability benefits and was declined. I have appealed this. My doctor advised me to take legal action against my former employer for not keeping me safe, for my severe injury caused while working for them and for allowing me to resign while mentally unwell, which is illegal. This is a long process, and I hope to receive some of the lost salary I would have earned over the last years and in the future.

I believe my life expectancy has been severely shortened, and the NHS has offered me no treatment at all. A friend paid for me to see a Neurologist privately, but there is no cure for Long Covid, and treatments are in their infancy.

The UK was one of the worst countries in the world for deaths from Covid.  The government at the time were appalling and caused thousands of unnecessary deaths. They treated the public and the healthcare workers with little concern and had blood on their hands. It has just come to light that the government doesn’t know how many people died from COVID-19, and the two estimates of deaths of healthcare professionals are 300 and 900. Both are wrong.

I submitted evidence anonymously to the Public Inquiry into Covid along with 30,000 others. These are being used as evidence of the disastrous mishandling of the pandemic.

I am also sharing my story anonymously with people who are documenting and investigating Covid. I want what happened to me, my colleagues and my patients to be recorded and made public.

The inquiry is revealing more horrors, and I hope those responsible will face appropriate action.

I have been let down by my employer, my government, the NHS, the social care system, and, unfortunately, friends and family who have disappeared from my life. 

My life is ruined, and while I survived COVID-19 in 2020, it is going to get me eventually. 

Long Covid should perhaps be called Slow Covid. A colleague remarked that sometimes he wishes he’d just died of COVID-19 in the first place instead of this drawn-out death.

I know what he means. However, I am grateful to have time with my ex-partner and my dog. Plus, have the opportunity to spread the word about Long Covid.

I am only 48, but I look and act like I’m 78. I have developed skin complaints, poor circulation, extreme weight loss and muscle tone depletion. My hair is falling out, and any cuts take months to heal. I sleep for three days at a time due to hypersomnia and forget to take my medication.

Early research has likened Long Covid to HIV in that your immune system has been destroyed. 

I hope treatments can be found and, maybe one day, a cure.

Share my experience, and do not let this happen again.

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