John's Story - Loss of his wife - Keeping the NHS Honest

Ok, I said I would write, so here goes. I will try and keep it as short as possible. In April 2020, my wife suddenly found a large lump in her breast, it appeared overnight. She had biopsies that showed triple negative breast cancer. Scans also showed enlarged lymph nodes in her chest. The doctors confirmed, when she asked whether they could be related to her asthma and chest infections she always had from being a child? They said quite possibly, so would wait for further scans and if no change then it’s unlikely that it would be connected to the breast. They never changed or became enlarged which would be normal for triple negative cancer. As an aside her sister, mother and a cousin all have or had weird immune systems. She saw an oncologist and he was convinced it was the cancer in her lymph system etc. She was going to start chemo and then they discovered from a further biopsy that she could have immunotherapy. By this time the lump had shrunk and neither she or I could feel anything. Treatment started but she had bad reactions to the treatment very quickly. On a scan it showed very little sign of any of the 'cancer'. They would operate to remove what was left but before that operation we still had one (which as it turned out, the last) appointment with the oncologist. He had recent scan results that showed odd lymph nodes and he said to us, and I quote (for reference, we are originally from Australia, although my wife was born in UK), " To use and Australian expression, I am pissed off. I don't know what is going on. I'm too old for this." She had the operation anyway, and guess what? No cancer according to the surgeon. They check 3 nodes in her breast and found 2 were fine, 1 was 'iffy' so decided to remove all nodes under her arm. She was told she would have a drain line fitted but it never was. She stayed overnight, as they do with type2 diabetes and was put on a gastric ward where there was an E.coli outbreak! I collected her at 4pm the next day, took her home and by lunchtime the following day she was back in Hospital, seriously ill with Sepsis caused by E.coli. She was there for nearly 4 weeks, seriously ill, heart damage, kidneys etc.. Eventually doctors came in and gleefully said they had 2 bits of good news. Firstly, the infection had cleared AND secondly, there was NO sign of cancer!! Just a granuloma which is hardening of a node caused by the immune disorder Sarcoidosis. Sarcoidosis for those who don't know is condition where the immune system can cause flair ups of the lymph system. Sarcoidosis also mimics other things one being breast cancer!! She never HAD cancer it would appear. The surgeon had the gall to say she must have caught sepsis in the community! Into the car and straight home! I don't think so!!!!! Sadly, the Covid vaccines didn't stop her getting serious Covid and all that entailed with 3 more stays in hospital with serious issues. It took them nearly 12 months to diagnose the Sarcoidosis. After Sepsis and Covid she had high calcium levels. Doctors kept telling her they didn't know what was going on and she was an interesting case, never seen this before....and on it went. She eventually told them she would discharge herself after nearly another 4 weeks being jabbed, tested etc. so they called in another doctor who was a Sarcoidosis specialist. He did a biopsy on a lymph node, came back and said she has Sarcoidosis and she could leave and be put on a course of steroids. Calcium levels returned to normal. Sarcoidosis was there from the beginning so if the oncologist didn't know why the hell didn't he/they investigate more? Even when they found it after the Sepsis they didn't put 2 and 2 together. Eventually we had a phone call from the oncologist. They had cancelled radiotherapy, no more scans and his words were "I think we will leave you alone for now." That was towards the end of 2022. More than months from when he was “pissed off” and after the Sarcoidosis specialist got involved. Without sepsis and LC her body would not have been so weakened and sadly very quickly she went downhill and had a massive heart attack in November 23. They even refused to believe she had Covid in Newcastle even after she was hospitalised in Dumfries with, as their reports said, serious Covid pneumonia. We were there on holiday recovering from sepsis in Nov 21. Caught Covid at the RVI after an appointment. I could say more but won't suffice to say obvious misdiagnosis from the start and cockups all the way!! I lost my partner of 53 years by NHS incompetence.

Catching COVID and the effect on Caroline

On or around the 16^th of November 2021, Caroline went to an appointment at the RVI, Newcastle. On the 26^th of November we left for a well-earned break after her apparent recovery from serious Sepsis in Scotland. However, a few days before she showed signs of not being well with what we now know as Covid symptoms. increase fatigue lack of interest in food headaches, increase in coughing slight rattle in chest in line with what she eventually had on the 26^th November During the night of the 26^th November, Caroline started to struggle to breathe. It was so bad that at around midnight I called an ambulance; by the time they arrived her oxygen levels were down to 55%. She was obviously in a critical condition. She was taken to Dumfries Hospital and was diagnosed with severe Covid pneumonia. She was given oxygen and was eventually discharged 5 days later. We came home to Newcastle the next day, but she was still testing positive for Covid. Four days later, Caroline became delirious and incontinent. The nurse from the home nursing team (whom she saw on a regular basis whilst undergoing care following her sepsis which required the open, but now cleared of infection, wound dressed at home) came to see her and immediately called an ambulance. This nurse told me then that there were 100s of symptoms associated with Covid and these were increasing all the time. Caroline was then taken to the RVI, still testing positive for Covid and spent the best part of 3 weeks in hospital. She was finally discharged just before Christmas 2021, clear of Covid infection but left with the following symptoms, all known to be linked to Long Covid.

extreme fatigue,
loss of appetite,
brain fog,
bouts of dizziness,
nausea,
irregular heartbeat,
rattly chest (she thought asthma), however, we put this down to the after-effects of sepsis,
Mobility issues,
High calcium levels,

In early February 2022, Caroline started to feel unwell again and still had the same symptoms she had in December 2021, as well as the rattly chest starting again. I took her to our GP where it was found once again her oxygen levels were low again. We were told we needed to go straight back to hospital. At this time there was NO mention of it being Covid related, even though she had had serious Covid in Scotland. It appears the original diagnosis from Scotland was never taken into account by the North East Health Trust in England! Whilst in the RVI for the third time, we were told Caroline had had a small stroke. Then they said no they made a mistake, then a few days later changed their minds back again! It was at this point, that I tried to talk to them about the Covid, however, no one would take me seriously. Even though it was now well known Long Covid can cause micro-clots and strokes. Fortunately, it was a small stroke though it did not help her brain fog. At this stage, I sent letters to the hospital asking to talk to doctors about what was going on, yet despite these efforts there were still no meetings or discussions - I was just ignored. Only when I refused to leave until I spoke to someone, did I make any progress. Eventually a doctor was called to speak with me, but yet again I was brushed aside and told “We don’t know what is going on.” At this time they were constantly doing blood tests because of high calcium levels, cannulas inserted and so on. In all of this it would appear that no one had taken any notice of her stay in Dumfries Hospital with Covid. Eventually, things did lead on to the final diagnosis of Sarcoidosis. By the time she was discharged, she still had all the classic Long Covid symptoms mentioned plus more, including further incontinence issues. All they saw was the stroke. Caroline had therapists doing house visits but only one took the Long Covid issue seriously. She eventually sent a report to the Long Covid Clinic but they came back and said she didn’t have or never did have Covid! Because of the lack of physiotherapy in hospital, the muscles in her legs wasted away. At one stage she was told off for daring to leave her bed and take herself off for a walk. She was never on a neurological ward, even though she had a stroke, she was probably and as far as I know and that she could remember, only once spoken to by a neurologist. Weeks afterwards we had a phone appointment from a neurologist but he called earlier than the appointed time but due to circumstances we missed the call! I was then told by the hospital, he tried multiple times but then admitted, no it was only once and this was only after some rather curt emails back and forth. Sadly, Caroline managed to get Covid again in June 2022 so I immediately called our GP to get her antivirals but was told she wasn’t eligible for them!! After being hospitalized 3 times with Covid issues!! They eventually reluctantly agreed, and we only scraped in just in time. Yes, Sepsis caused heart issues, but not once does it seem they thought Long Covid had made things worse, not even considered it nor issues with her kidneys. Yes, they did regular Echocardiograms to keep an eye on things but that was never because of Covid, so vital things like a thrombosis was not picked up, though she did have stent fitted 2 days before she passed away, but they missed another one which proved fatal.