I'd looked after my Pre-Registered Government Issue NHS Home PCR Test Kit for many months, hoping that I'd never have to use it, but knowing that I probably would, and believing that the NHS had my back, offering treatments to people infected with Covid who are at higher risk of becoming seriously ill. Those treatments are often referred to as the "Wonder Drugs", for obvious reasons. They are:
- nirmatrelvir and ritonavir (Paxlovid)
- sotrovimab (Xevudy)
- remdesivir (Veklury)
- molnupiravir (Lagevrio)
So, after submitting the result of my positive LFT on Saturday, I dragged the PCR kit out of safe storage.
That kit is to be used in specific circumstances, for specific reasons... I have a stack of sets of instructions for the use of that kit, the stack is about an inch thick, and, just for once, each set says the same thing. The plan is fairly basic so that it can be executed within 48 hours:
submit positive LFT result online > send pre-paid priority-post PCR test > await hospital contact > get either pills in the post, or a drip at a hospital
The initial response to my LFT result online submission was a wave of incoming texts and emails saying that I should stay safe at home, wait to be contacted within 24 hours, and I was to have all sorts of information to hand. There was no mention of the PCR test, which I thought was a bit odd.
The call came after a nervy 18 hours, from a triage phone-jockey, not a doctor. She confirmed my identity, ran through a scripted list of questions which had nothing to do with the info that I'd been told to have to hand, and said that I would be contacted by a doctor WITHIN SEVEN DAYS OF THE POSITIVE TEST. I queried that, as the meds that I'd been told I'd need should be given ASAP, mostly within FIVE DAYS of being infected, some needed to be in a lot sooner than that to be most effective. The response was that the doctor would make that decision. I was asked if I drive (yes, I do), but not if I could drive (no, I couldn't), the reason for the question being that I would probably have to go to a special unit in Glenfield Hospital car-park for my treatment. I wasn't asked if there's anyone else living here who is infected (yes, there is), and no further advice was given. Again, there was no mention of the PCR test.
It was shocking. And worrying, implying up to a week of waiting for a doctor to contact with me, when time was of the essence.
Eventually a doctor called me. He asked for my current meds list and questioned why I was taking each item... if he knew anything about SCT patients, he'd have known the answers. I'm not sure that he had access to my medical history, as he seemed to be working off the most-recent clinic letter from Haematology. I had to tell him the date of my AML diagnosis, the date of my SCT, and roughly when my immuno-suppression and chemotherapy treatments finished. He wasn't interested in GvHD episodes. Yet again, there was no mention of the PCR test.
Then came the kicker... he said that I didn't qualify for the "Wonder Drug" treatments, I was to follow the standard advice for those with Covid, and then he was off the phone and gone like a rat up an aqueduct.
I was gob-smacked.
I was on the blower to the transplant clinic staff as soon as they could spare some time for me. They too were surprised. Their advice had always been that if I was to contract Covid I'd need one of those wonder-drugs, and that advice from them hadn't changed. They said that I should submit the PCR test ASAP, I said that there was no point if I didn't qualify, so I'd binned/recycled it. I think that they got the point - they went off in search of the truth. They soon found it, and it wasn't what they were expecting to find...
The qualification criteria had been changed by the UK Chief Medical Officers, based on advice from an independent advisory group of health experts commissioned by the Department of Health and Social Care (DHSC). Source.
I'd not been told. The transplant clinic staff hadn't been told. There's not one person I know who had been told.
So here's the rub:
The transplant clinic docs know me inside-and-out (literally), they categorise me as "at higher risk" of contracting pretty-much anything and everything, and they say that's never going to change, as my immune system will always be sub-standard and vulnerable. They will never discharge me. It's like "Hotel California" with added needles and poisons.
But the Covid docs say that this century's greatest viral threat to human health is now no longer a sufficiently-high risk to me to merit the treatments that I would have received at the drop of a hat if I'd caught Covid two weeks earlier.
Same me, same Covid variant, different goal-post placement, so the risk to me has effectively increased due to the withholding of treatment.
Go figure.
