A case of missed heart disease as the Covid 19 pandemic takes hold in the UK

Photo by Sharon McCutcheon from Pexels

We lost a good man on 20th March 2020. He was my brother. As he became more and more ill my brother sought medical help and reached out to friends and family – trying to make sense of what was happening to him – but none of us knew about his heart disease. We were all looking in another direction as he was – he believed he had a chest infection.

Thankfully, a decision was made to have a post-mortem by the coroner. I like to think the evidence I provided to the coroner might have been a factor in this decision. This evidence was from one of my brother’s friends, who Felix had written to, after taking an initial double dose of the drug Doxycycline. I will leave my brother’s words to speak for themself.

I feel really rough but it’s all just unpleasant side effects from the antibiotics for my chest infection. I think the doctor gave me the strong stuff! ….Maybe (it’s Covid 19) but there’s so many possibilities. My attack was out of the blue- I was awake for a while and felt fine but once I got out of bed I started feeling really sweaty so I went back to bed and it swept over me like a slow wave and I could feel my arm muscles begin to ache and my chest felt heavier. My temp was 34 and I wasn’t comfortable standing up. It’s slowly gone back up to 35.3 and I now feel like I could walk around a bit but I still feel crap.

My brother was describing the symptoms of a cardiac infarction – a heart attack. Of course it may not have been the drug per se – the fact that it was Doxycycline – that let to the infarction symptoms Felix described so eloquently above. For what else could this have been? It is possible another antibiotic medication might also have caused a shock to the system of a very poorly man.

For whatever reasons, which surely deserve proper consideration, Felix’s GP surgery missed his heart disease and his pulmonary oedema (fluid on the lungs because the heart is struggling). He was misdiagnosed and given the wrong treatment.

We tried to get him to seek medical advice when he experienced problems but none of us had the whole picture – and he reassured us all that the symptoms he experienced were all just side effects of the antibiotic which was needed to make him well. He had read about them on the information provided with the drug. Everything would be fine – he reassured us all. I imagine he thought there was no point in seeking further medical advice when it had already been given – twice. The antibiotic would have just confirmed to my brother what he had thought himself – he had a chest infection. He apparently tried to call 111 but couldn’t get through. With the benefit of hindsight he should have been calling 999.

Sadly, because of my brother’s association with celebrities through his work, another story has unfolded in the aftermath of my brother’s death – and there have been other battles for me to fight so the reasons for Felix’s death can be understood and accurately reported. We were actually very lucky to get a post mortem a friend said afterwards. Post mortems are not being done (as they should be) during this pandemic due to government guidance that may be deeply flawed – as we will not learn about the illness if we simply discard the dead and the stories their bodies tell. I was alarmed to learn that no post mortem was done on a 13 year old boy who died from cardiac arrest in London on April 1st. This was such an unusual case and surely we need learning from such cases to understand this novel illness? There can also be learning from the deaths of those who died from other natural causes. Missed illness is going to be a massive problem. It surely shouldn’t be up to grieving relatives to battle away for understanding the reasons why people die, and prevention of future deaths, as I have had to do.

Anyway – in life – for 20 years – my brother had enjoyed working for a TV production company, Lime Pictures, who make Hollyoaks. Lime Pictures were informed about Felix’s cause of death as soon as we knew the post mortem findings (March 27th). Family members and close friends of Felix’s wanted to put right a sensationalist Covid 19 story about my brother’s death, which came about after the production company announced my brother’s death and the soap closure on the same day – and the tabloid press then targeted my Twitter feed- taking a tweet out of context to create a story that was misleading – and never speaking to me. No one seemed to understand how how upsetting it was for Felix’s loved ones to see his death continually linked with Covid 19 when it had been due to a heart attack. Missed heart attacks are also an issue of national concern and importance in the Covid 19 pandemic.

I had completed a MHRA (Medicines Health Regulatory Authority) Yellow Card about an ADR (Adverse Drug Reaction) almost immediately, towards the end of March. The MHRA finally got back to me on 21st April and informed me that there had been four cardiac ADRs (adverse drug reactions) associated with Doxycycline reported to the scheme and one of these was a fatality. It is not clear over what time period these reports were made and I have queried this. I immediately provided this information linking Doxycycline with cardiac ADRs to the coroner.

On April 27th the coroner got back to me to say the case would not be reopened.

The pathologist’s report, which is an upsetting thing for any loved one to read, describes my brother as being black/grey haired with a beard and a moustache – when he was fair haired and clean shaven. It was soul destroying to learn that the pathologist gives no credence to my brother’s lived experience of an infarction. Histological evidence suggests the infarction was some days earlier than the 16th March. My brother’s experience should not be negated because there was no identifiable of histological evidence. The report justifies it’s conclusion that Doxycycline medication was not involved on the basis of there being nothing in the literature about ischeamic heart disease being caused or exacerbated by Doxycycline. The MHRA evidence I provided to the coroner clearly made no difference and seems to have been given no weight.

Since there is no other plausible explanation for my brother’s experience of a heart attack on 16th March, and because I believe it is important that there is learning from this case to prevent future deaths, I asked for the decision to close the case to be reviewed. The coroner’s response has been like Lime Pictures – to cease communication with me. The death is now processed.

I cannot see anything beneficial coming from my brother’s death to help others now.

My brother  was a very poorly man.  The treatment he was given compounded his belief he had a chest infection. A catalogue of misunderstanding meant he died. When I eventually called his GP surgery on 1/5/20 I was immediately asked if I wished to make a complaint. It said I didn’t – I was solely interested in preventing future deaths. I was told I should speak to the practice manager. I called back on 5/5/2020 but did not get far with the practice manager – who had never heard of the Yellow Card Scheme although she had worked at the surgery for 20 years. There was no thought given or action taken when the coroner had got in touch to ask for reports.

The MHRA eventually got back to me on 1st May 2020. They gave me a brief description of the four other ADR’s, which they confirmed were the only ones on record – two were reported by pharmaceutical companies, one by a health professional and the fourth from a patient. They pointed out the medication had been safely used for 30 years by millions of people and explained that the PIL (Patient Information Leaflet) that is given with the medication follows the necessary guidance – directing me to this guidance. They concluded by telling me they were committed to patient safety.

I do not want my brothers death to be futile as well as tragic – when it could help others – but all I can see is more people getting the wrong treatment or dying who shouldn’t be. I have put some suggestions for what might help prevent future deaths into another blog, which follows on from this one. You can read this HERE.

I am very disappointed with the MHRA – when professionals are not using the scheme properly and there seems to be poor public awareness of it. It is evident that had I not reported the ADR the MHRA would have no knowledge of it – but my reporting of it seems to have achieved nothing.  I lose faith in the system now. Nevertheless, I  encourage you to please make use of the Yellow Card Scheme to report ADRs. It is all we have.

You can do this HERE