After my severe and now chronic reaction to a single COVID vaccination in 2021, it was immediately apparent that doctors did not have a clue what they were talking about. My first comment upon calling 111, after learning what my job was (a NHS SARS-CoV-2 scientist at the time), was "you probably know more about this than I do". Not helpful. Several doctors recommended I get another vaccine, many have inferred my symptoms are psychological, many have denied research presented to them (including research I am actively involved in and therefore know a hell of a lot more about than they do), and one doctor refused a referral after 6 months of non-stop debilitating symptoms because "dizziness and nausea are expected after a vaccine". The 2 good NHS doctors I have had both respected my expertise as a scientist in the field, respected my lived experience, and based their decisions on evidence rather than deeming it acceptable that I rot away slowly. The other good doctor I have is private - but why should we have to pay when the NHS has harmed us?
It took 14 months to find the blood clots in my lungs, even though my D-dimer was elevated and AstraZeneca is a known thrombotic vaccine. I was told repeated D-dimer just showed inflammation. Beyond that being wrong (it's a clot breakdown factor), they did not even offer me treatment for this alleged inflammation.
~3 years into COVID vaccination and there are still no guidelines based on evidence. Patients are still leading the way with research. Doctors refuse to prescribe mechanistically helpful drugs off-label. They forget that "do no harm" also applies to doing nothing and letting patients suffer due to their ignorance and unwillingness to take risks that highly informed patients consent to.
In all: Reactions are not understood at all clinically, but even worse, there is a reluctance to learn, even when the patient sitting in front of them is a subject expert. Patients are generally not well provided for, unless they happen to find the unicorn doctor who cares for their patients and listens to research. This breaks the GMC principle of justice - whereby patients should expect to receive equal treatment. The entire system needs dismantling. We need critical thinkers as doctors, with proper scientific training so they know how to tackle a problem. We need specialist clinics who can help patients holistically, instead of by each system. We also need URGENT tests, diagnoses, treatment, and research. This is because it is no use finding a signal for small fibre neuropathy in 10 years time when finally enough patients have been tested. Without up-to-date rapid diagnoses, future vaccinees cannot give informed consent. Patients know the risks, doctors do not. How can anyone make an informed consent in this situation? Finally, all the faffing around pretending that we do not exist only fuels mistrust in the system - why would anyone trust doctors and authorities when we get abandoned, abused, ignored, and left to rot after we took a government and NHS approved vaccine?
