Her daughter was falsely diagnosed with long Covid - now she's dead

As a radio-frequency engineer, my 27-year-old daughter Jess should be designing her next satellite right now.

She should be splashing through puddles, running 5km, painting her nails to perfection, sharing cleaning hacks, creating her own crocheted crafts, avidly reading a new book, planning the itinerary for her next travel adventure, and looking forward to a future with her partner Alex.

But for my lovely Jess, time has run out and there is no ‘right now’.

The unbearable truth is, Jess lost her life to cancer. A cancer she did not know she had until it was too late. There was no treatment or opportunity for her to fight it because in 2020 – a year dominated by Covid-19 – the only tangible explanation medics gave for her poor health was ‘long Covid’.

In the aching void of losing Jess, my precious, beautiful child, I grapple with the need to keep her memory alive. I promised I would and, in doing so, tell her story. Sweet Jess, so desperate for others to avoid the same pain and suffering as her.  

Last summer, when our world was enveloped in an eerie silence and everything but the virus stood still, Jess began to feel unwell.

She first sought medical support in July because, in addition to chronic fatigue, she had developed a light but persistent cough and hoarse voice. She was treated liberally with antibiotics, but her symptoms did not improve.

The doctor’s explanation was long Covid – side effects of coronavirus that last more than 12 weeks – because, despite never thinking she had it, and two negative coronavirus tests, she was told these tests were not always accurate.

Jess was perplexed but accepting, as she was not a medical expert and initially grateful for some explanation for her poor health. Long Covid seemed improbable but the doctors were not unduly concerned and were reassuring.

Jess contacted her GP surgery on more than 20 occasions in five months and went to A&E. As winter took its grip, she also called an ambulance when her back spasmed, rendering her immobile.

For me, realisation struck in early November that there was the possibility of cancer when large, ugly glands appeared on her neck. I became frightened that perhaps my daughter had lymphoma.

Jess was permitted a face-to-face doctor’s appointment and I was allowed to attend. Again, she received reassurances – she was young, previously healthy and apparently there was no knowing how long a referral to a specialist would take.

Desperately worried, I paid for Jess to see a private ENT consultant. It was at this appointment she was referred urgently for a biopsy. The medical procedure was finally performed nine days later and then we began another wait – for the results.

That week was frightening and distressing. Jess was very poorly and returned with us to her family home to be cared for by Simon – Jess’ father – and I. Night and day we stayed by her side. We offered comfort, care and love. What we really wanted to give was unconditional hope.

On 26 November, Jessica and I sat together to receive her biopsy results.

Secondary cancer had been found in her lymph nodes but they did not know where the primary was. We listened to the words every person dreads.

Jess was immediately admitted as a hospital inpatient and in the next 24 hours, the full picture emerged. She was diagnosed with stage 4 adenocarcinoma – a type of cancer that starts in mucus-producing glandular cells of the body.

eddie wrote:To be honest I find GP’s useless. They’re just a middle man - you have to see them to get to see a specialist. Google is as much a GP as a human one.

eddie wrote:More from the article:

Jess contacted her GP surgery on more than 20 occasions in five months and went to A&E. As winter took its grip, she also called an ambulance when her back spasmed, rendering her immobile.

For me, realisation struck in early November that there was the possibility of cancer when large, ugly glands appeared on her neck. I became frightened that perhaps my daughter had lymphoma.

Jess was permitted a face-to-face doctor’s appointment and I was allowed to attend. Again, she received reassurances – she was young, previously healthy and apparently there was no knowing how long a referral to a specialist would take.

Desperately worried, I paid for Jess to see a private ENT consultant. It was at this appointment she was referred urgently for a biopsy. The medical procedure was finally performed nine days later and then we began another wait – for the results.

That week was frightening and distressing. Jess was very poorly and returned with us to her family home to be cared for by Simon – Jess’ father – and I. Night and day we stayed by her side. We offered comfort, care and love. What we really wanted to give was unconditional hope.

On 26 November, Jessica and I sat together to receive her biopsy results.

Secondary cancer had been found in her lymph nodes but they did not know where the primary was. We listened to the words every person dreads.

Jess was immediately admitted as a hospital inpatient and in the next 24 hours, the full picture emerged. She was diagnosed with stage 4 adenocarcinoma – a type of cancer that starts in mucus-producing glandular cells of the body.

So fucking sad and unnecessary. They had contacted the GP on TWENTY separate occasions. Twenty!
Someone needs to answer to this.

Syl wrote:GP services, which I admit in this area are sadly lacking, are just a small part of the NHS.
Unfortunately, like has been said, GP's are often the first port of call to get to other services.

The NHS has been terribly under pressure since this pandemic began, the hospitals, nurses, medics, consultants etc have all been under immense pressure here, as of course they have been everywhere, and they have done a brilliant job as always.

And...we do still have a private medical services if people are willing or able to pay, so we have the choice.

Original Quill wrote:This kind of story feeds right into the narrative in the US, that socialized medicine breeds incompetence because anything that is free cannot be worth anything.

America conservatism is so steeped in self-interest economics that to observe someone who is not making a profit, is ipso facto to observe someone doing nothing.  Hence, something like the NHS is prone to malpractice.

This story is taken in America as: See...I told you so!!

But that's just a side note.  Her mother pinpoints the real cause with the following: “a year dominated by Covid-19”.  The medical establishment was so preoccupied with thoughts of Covid that they overlooked the obvious.

Maddog wrote:

Syl wrote:GP services, which I admit in this area are sadly lacking, are just a small part of the NHS.
Unfortunately, like has been said, GP's are often the first port of call to get to other services.

The NHS has been terribly under pressure since this pandemic began, the hospitals, nurses, medics, consultants etc have all been under immense pressure here, as of course they have been everywhere, and they have done a brilliant job as always.

And...we do still have a private medical services if people are willing or able to pay, so we have the choice.

GPs are the gate keepers to service. They have to be better. There is no reason anyone shouldn't see one in person within a day or two of calling. Attempting to deliver medicine over the phone is asinine. The GPs weren't in the covid wards. They were not being that stretched. They had time.

The NHS reminds me of our public schools. Don't like them, and you still have to pay for them while paying for private schools too.  Assuming you can afford it...

Syl wrote:

Maddog wrote:

GPs are the gate keepers to service. They have to be better. There is no reason anyone shouldn't see one in person within a day or two of calling. Attempting to deliver medicine over the phone is asinine. The GPs weren't in the covid wards. They were not being that stretched. They had time.

The NHS reminds me of our public schools. Don't like them, and you still have to pay for them while paying for private schools too.  Assuming you can afford it...

Yes, I already said GP's were the first port of call, and many, imo, have let their patients down badly, they have also let the NHS down badly, and they have used Covid to distance themselves from the very people they should be caring for.

But they are a small part of the NHS and I get defensive when people, like yourself run the whole of the NHS down, you have had zero experience of their care, whilst people like me have had it since birth.
I have never felt the need to go outside of the NHS for any medical procedure, in short, they have looked after me all my life.

There is a world famous NHS hospital in Manchester which treats more than 60,000 cancer patients a year.
I think everyone of them would dispute your condemnation of the NHS.

There are bad uncaring doctors and mistakes are made in medical care as shown in the OP, but that can happen privately too, as I'm sure it happens with your care in the US, that costs most of you a fortune to get.

https://www.christie.nhs.uk/about-us/news-at-the-christie/latest-news-stories/the-christie-is-one-of-world-s-best-specialist-hospitals#:~:text=The%20Christie%20is%20one%20of%20the%20world%E2%80%99s%20top,countries%2C%20including%20the%20UK%2C%20the%20USA%20and%20Canada.

Syl wrote:Even the best Dr's can make mistakes, no matter how much you pay.

GP's were in my experience always reliable. I dont know what's happened over the last few years, maybe too many people needing the service. I would be lying if I said in my own recent experience (maybe over the last 7 or 8 years)  GP's are reliable....I do know in other parts of the UK the service is a lot quicker.

Maddog wrote:

Original Quill wrote:This kind of story feeds right into the narrative in the US, that socialized medicine breeds incompetence because anything that is free cannot be worth anything.

America conservatism is so steeped in self-interest economics that to observe someone who is not making a profit, is ipso facto to observe someone doing nothing.  Hence, something like the NHS is prone to malpractice.

This story is taken in America as: See...I told you so!!

But that's just a side note.  Her mother pinpoints the real cause with the following: “a year dominated by Covid-19”.  The medical establishment was so preoccupied with thoughts of Covid that they overlooked the obvious.

A few tests identified it quickly. Can't run the tests if no one sees her. The system killed her.

Original Quill wrote:Her mother pinpoints the real cause with the following: “a year dominated by Covid-19”. The medical establishment was so preoccupied with thoughts of Covid that they overlooked the obvious.

Original Quill wrote:

Maddog wrote:

A few tests identified it quickly. Can't run the tests if no one sees her. The system killed her.

Original Quill wrote:Her mother pinpoints the real cause with the following: “a year dominated by Covid-19”. The medical establishment was so preoccupied with thoughts of Covid that they overlooked the obvious.

Maddog wrote:




Horseshit.  

Oncology doctors were not treating covid patients.

Neither was her GP that basically killed her.  

Same as when my daughters had numerous appointments with their OBGYNs during the pandemic.  The doctors not dealing with Covid patients needed to continue to treat their patients.  

Covid is being used as an excuse to cover for a systemic failure that killed this young lady.

Vintage wrote:One thing I won't have is the disrespecting of the NHS, it does stirling work and yes mistakes happen they also happen in private medicine everywhere, here those private mistakes, if they don't kill you immediately are usually put right by an NHS hospital and staff.
Young people are not suspected as having cancer, unless its particularly obvious, there does seem to be a mind block that its only older people.
I'm only still here because of screening and absolutely great treatment my husband is also still here because of prompt diagnosis and treatment, so please don't disrespect the NHS as a whole
doctors vary in their diagnostic abilities and interest everywhere, they are making educated guesses after all. I've heard many stories of people being misdiagnosed or never diagnosed in private medicine. Sometimes I've arranged their funerals.

Original Quill wrote:

Maddog wrote:




Horseshit.  

Oncology doctors were not treating covid patients.

Neither was her GP that basically killed her.  

Same as when my daughters had numerous appointments with their OBGYNs during the pandemic.  The doctors not dealing with Covid patients needed to continue to treat their patients.  

Covid is being used as an excuse to cover for a systemic failure that killed this young lady.

But all patients go through what they call triage, which is determining the priority of patients' treatments by the condition, and the severity of their condition.  This apportions and rations patient treatment efficiently when resources are insufficient for all to be treated immediately.

If you recall, in the early days of the pandemic hospital beds and respirators were the severe needs.  Physicians were so preoccupied with a patient having Covid-19, that when she turned up negative she was sent home.

I believe that early in this pandemic EM conditions were so chaotic, and physicians were so concerned about Covid-19, that the triage went from determining the condition to expecting the Covid-19 condition.  They became myopic.  That's the "systemic failure that killed this young lady".  The overload, and shortage of resources, meant that negative test results meant don't go any further.  They didn't even think of cancer.  This is why the mother marked the pandemic as a primary cause.

Syl wrote:"The Queen has awarded the George Cross, the UK’s most esteemed award for heroism, to the NHS on the 73rd anniversary of its foundation.

Recognising the work of NHS staff across the four nations of the UK, the Queen praised their “courage, compassion and dedication” over more than 70 years of service.

In a personal, handwritten message, she wrote: “It is with great pleasure, on behalf of a grateful nation, that I award the George Cross to the National Health Services of the United Kingdom.

“This award recognises all NHS staff, past and present, across all disciplines and all four nations.

“Collectively, over more than seven decades, they have supported the people of our country with courage, compassion and dedication, demonstrating the highest standards of public service.

https://www.independent.co.uk/life-style/royal-family/queen-george-cross-nhs-73rd-anniversary-hand-written-letter-b1878166.html

Vintage wrote:One thing I won't have is the disrespecting of the NHS, it does stirling work and yes mistakes happen they also happen in private medicine everywhere, here those private mistakes, if they don't kill you immediately are usually put right by an NHS hospital and staff.
Young people are not suspected as having cancer, unless its particularly obvious, there does seem to be a mind block that its only older people.
I'm only still here because of screening and absolutely great treatment my husband is also still here because of prompt diagnosis and treatment, so please don't disrespect the NHS as a whole
doctors vary in their diagnostic abilities and interest everywhere, they are making educated guesses after all. I've heard many stories of people being misdiagnosed or never diagnosed in private medicine. Sometimes I've arranged their funerals.

Maddog wrote:

Original Quill wrote:

But all patients go through what they call triage, which is determining the priority of patients' treatments by the condition, and the severity of their condition.  This apportions and rations patient treatment efficiently when resources are insufficient for all to be treated immediately.

If you recall, in the early days of the pandemic hospital beds and respirators were the severe needs.  Physicians were so preoccupied with a patient having Covid-19, that when she turned up negative she was sent home.

I believe that early in this pandemic EM conditions were so chaotic, and physicians were so concerned about Covid-19, that the triage went from determining the condition to expecting the Covid-19 condition.  They became myopic.  That's the "systemic failure that killed this young lady".  The overload, and shortage of resources, meant that negative test results meant don't go any further.  They didn't even think of cancer.  This is why the mother marked the pandemic as a primary cause.

GPs don't work in the hospital.

I can understand a back up there. My ex had breast cancer last year.  There were issues in the hospital scheduling a hospital room, but there were never any issues seeing her doctors, face to face at their offices.

One hospital was getting close to full. No problem. Switch to another hospital.

Maddog wrote:

Vintage wrote:One thing I won't have is the disrespecting of the NHS, it does stirling work and yes mistakes happen they also happen in private medicine everywhere, here those private mistakes, if they don't kill you immediately are usually put right by an NHS hospital and staff.
Young people are not suspected as having cancer, unless its particularly obvious, there does seem to be a mind block that its only older people.
I'm only still here because of screening and absolutely great treatment my husband is also still here because of prompt diagnosis and treatment, so please don't disrespect the NHS as a whole
doctors vary in their diagnostic abilities and interest everywhere, they are making educated guesses after all. I've heard many stories of people being misdiagnosed or never diagnosed in private medicine. Sometimes I've arranged their funerals.

And thats why the NHS will get worse. Its like a religion to some folks and critiquing it when it needs to be, just isn't right. Instead, it's praises shall be sung and its incompetence overlooked..

Original Quill wrote:

Maddog wrote:

GPs don't work in the hospital.

I can understand a back up there. My ex had breast cancer last year.  There were issues in the hospital scheduling a hospital room, but there were never any issues seeing her doctors, face to face at their offices.

One hospital was getting close to full. No problem. Switch to another hospital.

Hospitals, clinics or offices...the pressure that a pandemic poses is the same.  Once the overload starts, medical staffers tend to shorten their diagnoses and opt for the quick and easy.  They think Covid-19...and hasten on to the next patient.  It's the extraordinary pace that causes them to overlook things.

Vintage wrote:

Maddog wrote:

And thats why the NHS will get worse. Its like a religion to some folks and critiquing it when it needs to be, just isn't right. Instead, it's praises shall be sung and its incompetence overlooked..

Rubbish, it is a good service, it could be better as with all things, things can and do go wrong, I'm just saying don't throw the baby out with the bath water. When things go wrong put it right, always try to improve.. Its run by humans beings - they are inevitably fallible, they are in private health schemes as well.

Maddog wrote:

Original Quill wrote:

Hospitals, clinics or offices...the pressure that a pandemic poses is the same.  Once the overload starts, medical staffers tend to shorten their diagnoses and opt for the quick and easy.  They think Covid-19...and hasten on to the next patient.  It's the extraordinary pace that causes them to overlook things.

No, the pressure wasn't the same. That's why I never had an issue seeing a doctor. They weren't seeing near the pressures that hospitals were.

You're making excuses for a death that shouldn't have happened..

And BOTH Syl and Eddie have stated seeing their GPs before the pandemic was becoming a problem.

I know that you can pick up the phone and have your ugly mug parked in front of your doctor in less than 48 hours if you need to seem him or her.

That doesn't seem to be the case with the NHS before and definitely during the pandemic.  

Original Quill wrote:

Maddog wrote:

No, the pressure wasn't the same. That's why I never had an issue seeing a doctor. They weren't seeing near the pressures that hospitals were.

You're making excuses for a death that shouldn't have happened..

And BOTH Syl and Eddie have stated seeing their GPs before the pandemic was becoming a problem.

I know that you can pick up the phone and have your ugly mug parked in front of your doctor in less than 48 hours if you need to seem him or her.

That doesn't seem to be the case with the NHS before and definitely during the pandemic.  

My GP was so flooded with requests that he went to tele-visits.  Everyone here was overloaded.

eddie wrote:GP’s are pretty useless, let’s be fair.  They are just human-Google’s.
We only see a GP for a prescription refill or because we want to see an actual doctor.

I’ve seen some pretty shit GP’s who have about as much knowledge as me on my thyroid. As for asking them about specifics of an illness....forget it!

Vintage wrote:Some systems should be scrapped definately, like paying for health services, where the lucky or the rich gets first dibs on it.
Strange how people will pay taxes for roads, for schools and worst of all for the military but draw the line at health care.

Maddog wrote:

Vintage wrote:Some systems should be scrapped definately, like paying for health services, where the lucky or the rich gets first dibs on it.
Strange how people will pay taxes for roads, for schools and worst of all for the military but draw the line at health care.

I am not rich. I may be lucky because I can see a competent doctor whenever I like.  I pay a monthly fee similar to what I would pay for the NHS for this privilege.

Syl wrote:

Maddog wrote:

I am not rich. I may be lucky because I can see a competent doctor whenever I like.  I pay a monthly fee similar to what I would pay for the NHS for this privilege.

iWe can see a competent Dr whenever we like too if we pay.

Re the NHS, not everyone pays tax here, I think it's only charged on earnings more than £12,000 pa.
Up to £50,000, a proportion of 20% tax on earnings is given to the NHS.  But for many, including lower paid, people on benefits, children, pensioners, etc....the NHS is free.

I bet you pay more than that in private medical insurance.

Maddog wrote:

Syl wrote:

iWe can see a competent Dr whenever we like too if we pay.

Re the NHS, not everyone pays tax here, I think it's only charged on earnings more than £12,000 pa.
Up to £50,000, a proportion of 20% tax on earnings is given to the NHS.  But for many, including lower paid, people on benefits, children, pensioners, etc....the NHS is free.

I bet you pay more than that in private medical insurance.

I pay about the same or a little less than I would pay there for NHS. Of course here I also pay taxes for Medicare and Medicaid which covers the poor and elderly, but with the same private doctors that the rest of use.  

I don't know what the NHS and BUPA would cost me. Because I make more than the average person, I'm thinking that might be more than I'm paying here.

And, you seem to be suggesting that the more competent doctors and services are in the private sector of your health care. I can assure you, that happens here too, to a degree.  It's why I don't mind paying $500 / month for insurance.  

Syl wrote:

Maddog wrote:

I pay about the same or a little less than I would pay there for NHS. Of course here I also pay taxes for Medicare and Medicaid which covers the poor and elderly, but with the same private doctors that the rest of use.  

I don't know what the NHS and BUPA would cost me. Because I make more than the average person, I'm thinking that might be more than I'm paying here.

And, you seem to be suggesting that the more competent doctors and services are in the private sector of your health care. I can assure you, that happens here too, to a degree.  It's why I don't mind paying $500 / month for insurance.  

Many Dr's, consultants, medics who work privately  also do NHS ops....the difference is the speed you will be seen.
I had a full knee replacement a few years ago, the Dr who performed it does the same op  privately, I had mine done on the NHS and probably waited a few months longer, but it wasn't a problem. I received physio and after care for 2 years....all free, and have no complaints at all.

My main bugbear, and I know I speak for many, are the GP services here. Over the last few years they have fallen way below what we have always expected.

Original Quill wrote:Take the facts first. The United States spends almost 15% of gross domestic product on health care compared with less than 8% in the United Kingdom.  Population health as measured by infant mortality and life expectancy are broadly comparable in the two countries and lag behind those achieved in high performing systems like Japan and Sweden.  Although the majority of the public in both the United Kingdom and United States express dissatisfaction with their healthcare systems, a higher proportion of the British population think their system works well, and a lower proportion believe the system needs to be rebuilt completely, than in the United States.

Around 45 million Americans under the age of 65 lack health insurance cover, and far more US citizens than UK citizens report that the cost of health care is a barrier to access. In a five-nation survey that included Britain and the United States, Britain performed best in offering health care that was equitable, even though waiting times for treatment were the longest.  A study of the quality of medical care in different countries found the United States performing relatively well, although the authors noted that in view of the much higher levels of expenditure “it is difficult to conclude that it is getting good value for its medical dollar.”  An overall assessment made by the World Health Organization in its hotly contested ranking of countries in terms of health system performance placed the United Kingdom 18th and the United States 37th out of 191 countries studied.

This suggests that as a system the achievements of the United States do not match those of the United Kingdom, even though the United States contains many examples of clinical excellence and provides highly responsive care to people who are insured.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC554041/

Tommy Monk wrote:


Maybe you just need to 'open up your chakras...

eddie wrote:To be honest I find GP’s useless. They’re just a middle man - you have to see them to get to see a specialist. Google is as much a GP as a human one.

eddie wrote:GP’s are pretty useless, let’s be fair.  They are just human-Google’s.
We only see a GP for a prescription refill or because we want to see an actual doctor.

I’ve seen some pretty shit GP’s who have about as much knowledge as me on my thyroid. As for asking them about specifics of an illness....forget it!

Syl wrote:

Maddog wrote:

I pay about the same or a little less than I would pay there for NHS. Of course here I also pay taxes for Medicare and Medicaid which covers the poor and elderly, but with the same private doctors that the rest of use.  

I don't know what the NHS and BUPA would cost me. Because I make more than the average person, I'm thinking that might be more than I'm paying here.

And, you seem to be suggesting that the more competent doctors and services are in the private sector of your health care. I can assure you, that happens here too, to a degree.  It's why I don't mind paying $500 / month for insurance.  

Many Dr's, consultants, medics who work privately  also do NHS ops....the difference is the speed you will be seen.
I had a full knee replacement a few years ago, the Dr who performed it does the same op  privately, I had mine done on the NHS and probably waited a few months longer, but it wasn't a problem. I received physio and after care for 2 years....all free, and have no complaints at all.

My main bugbear, and I know I speak for many, are the GP services here. Over the last few years they have fallen way below what we have always expected.

Syl wrote:A % of tax and we pay throughout our working lives goes into the NHS....as it goes into policing the country, keeping it clean, paying towards the royal family, etc.....a pittance in fact for the service compared to what you would pay for private medical insurance.
NI contributions apart from propping up the NHS also prop up your state pension when you retire, so you get it back.

If we are not working for any reason, underprivileged, retired, underage, too ill to work, the same NHS service is there.