Claire A-P

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.

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.

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.