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Adverse reactions to Covid-19 vaccination - are adverse reactions adequately understood and are patients affected provided for in your area?



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After having an adverse reaction to the AstraZeneca vaccine myself in 2021 and becoming chronically unwell, I set up the UK's first support group for people affected. A poll of our members showed that 45% felt extremely dissatisfied with their NHS handling of their adverse reaction. What has your experience been (if any) as either a patient affected or a medical professional when presenting/presented with an adverse reaction to a Covid-19 vaccination ?

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After having adverse reactions to 2 Astra Zeneca Covid Vaccines, I am finding that the health professionals I see do not accept that my symptoms are caused by the Vaccines. They are also not interested in researching the possibility that the Covid Vaccines have contributed to symptoms that occurred 4 days after my first Vaccine. Do you have any advice on how I can overcome this reluctance to hear my concerns, and prevent my thoughts and experiences being dismissed?

 

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I had two Pfizer vaccinations. Maybe because I live close to a large hospital and have seen a neurologist who is now leading a Long Covid clinic, I have never had my reaction questioned. In many ways initially I think I was treated as an interesting curiosity.

However that doesn’t mean I’ve had any useful treatment. Sadly the NHS feels too siloed, slow to react to emerging learnings and generally subject to political and financial pressure that means accepting vaccine injuries as fact is not something consultants, let alone GPs, want to do. 
 

I worked out I had MCAS in summer ‘21 but I was first laughed at and then ignored when I suggested this. It’s too niche apparently. I’ve paid privately to be diagnosed, bought private prescriptions. The same for PoTS. Yet those who diagnosed me also work for the NHS yet these aren’t accepted and put on my records, and my GP won’t take on my prescriptions.

 

I understood initially why there was a lack of knowledge as the vaccines were new, but it’s been nearly three years and no doctor I see now i surprised. But where is the support? Who is researching us? That’s even more worrying than the lack of care or foresight. 

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I wasn't going to post here, as I have severe trust issues, 

I automatically assume everybody will be just like the GP's, who dismiss everything, and aren't interested in helping, to date after reacting to 2 AstraZeneca Vaccines, I have only 1 diagnosis (Post Vaccine Headache's  that can occur in up to 30% of cases), that's actually mentioned the Vaccine, despite there being 3 main issues caused 🤷🏼‍♂️

One is Bilateral Lymphoedema, and another is Large Unidentified Lump, in my Right Leg, and the doctors verbally agreed the Vaccine is the cause, yet they didn't actually write it down.

They seem to say one thing, but actually appear to believe something else, no sincerity, most of the time, appearing to dismiss the vaccine as the cause.

More recently, I believe it's caused another issue, but I'm not about to try, to push them, I don't want to be, hospitalised over Christmas, interference with immunity, acquired through previous vaccines, for other diseases 🤷🏼‍♂️ 

That's how poor things have been, I won't trust anyone, not even to test for another communicable disease, that is highly contagious, and poses a risk of death, it takes a lot to get to that point, but the answer is nobody researches us, besides those at UK CV Family, and our closest loved ones, and it appears, nobody cares besides those either😊

I hope maybe someone gets some answers to these questions, because it would be nice to know if anyone is actually researching us? However, I suspect not 😔🤷🏼‍♂️

I can't even see a GP, I've never seen one, since I joined the practice, I saw a clinical nurse once, to get a referral to the nearest Lymphoedema Clinic 33 mile round trip away, with 2 buses to get there, that are unreliable, I have to travel 2 miles just to see a clinical nurse, it might not sound far, but I don't drive, and never will be able to, since the vaccines seem, to have damaged my eyesight, with enlarged optic disc, and too much light, entering my eye 😔🤷🏼‍♂️

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I’m so sorry Ceri. I share the frustration that no one is researching us. We’re really not as rare as is made out and the side effects are life-altering and seemingly permanent and even progressive for so many of us. 

It feels to me like a political decision because no one wants to question a medical intervention so many people have had. Yet they need to. I find my lack of trust in doctors harder to deal with than my actual medical issues as I’m always second guessing what they say and do and why. It’s truly horrific.
 

I hope you and we get better care and answers soon. 

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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? 

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I too was left with declining health immediately after having AstraZeneca in April 2021. I was very apprehensive about taking something that had been rushed through the approval phase, but my employer was pressurising staff to get vaccinated and the government and the NHS promoted the vaccine as something that anyone with any condition (except for kids) should take to get some sort of protection (they didn’t say for sure what the benefits would be). We all now know that the vaccines couldn’t stop people getting infected nor stop them transmitting the virus, but the risk of damage to our health has been largely swept under the carpet. It doesn’t help that the Green Book fails to recognise all but a few conditions as being caused by adverse reactions to covid vaccinations. Add to this the reluctance or outright stubbornness by health practitioners to recognise or diagnose post covid vaccination syndrome/ vaccine injury and it should become clear how dire the health care is for people like me. I now have a private diagnosis but I also need my regular GP to be open minded enough to take the recommended medication and further tests seriously.

 The NHS needs to recognise that post covid vaccination syndrome/ vaccine injury is NOT a psychological condition; instead people experience a range of physical conditions resulting from damage to their immune and other systems. Typical issues include (but are in no way limited to) Chronic Fatigue, Mast cell activation syndrome (MCAS) and Postural tachycardia syndrome (PoTS). Despite large numbers of people experiencing similar issues, diagnosis on the NHS is difficult to impossible. Many allergists won’t even accept that MCAS is a real condition, yet alone diagnose it, despite NHS research papers from over 15 years ago.

 Many people are living at a fraction of  how their lives used to be, or could be, thanks to the covid vaccination; some recognition, understanding and support from the Government and NHS health providers would go a long way.

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I agree Hannah.
 

The issues with the green book are so frustrating. So many of us deserve and need the VDPS payment yet we have no chance of getting it as there is no recognition of our reactions.

I’ve only just got any note on my NHS records - a “new event” apparently despite it being over 2.5 years ago. But at least there seems to be a code for it now, and my GP has accepted a private diagnosis of MCAS. It really shouldn’t be this hard and require us to go private however. 

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