Extra Covid Dose Fiasco: Four Jabs Advised for Immunocompromised

If you are immunocompromised, you are entitled to an extra dose of Covid vaccine. But you may well not have heard about this ...

You'll have received 'shielding' letters last year (though not everyone who received those communications is immunocompromised), and will have subsequently been told you're no longer considered clinically extremely vulnerable. Square that one up!  

You are probably someone who disinfected or quarantined your groceries in the first year of the pandemic and who now feels understandably unsure about any human contact outside, and even within, the household - particularly now it's known (but not officially recognised) that Covid is spread through the air and that mixing indoors without good ventilation is still extremely dangerous, especially with case numbers remaining sky high. 

You are likely to feel that you're living in a parallel universe, where the majority now seem to go out-and-about, more-or-less as normal, and the media pump out propaganda from Westminster claiming we're now post-pandemic and need to 'live with the virus' (this, while hospitals and intensive care units are still filling up with Covid patients, the death toll from the disease is still staggering, and few mitigations apart from vaccines are in place to stop the virus from carrying on merrily mutating).

I fall into the category of people who have a damaged, dysfunctional immune system. I have a chronic blood cancer called CLL (Chronic Lymphocytic Leukemia) and was recently treated with powerful targeted drugs on the FLAIR Clinical Trial.

If you are ~ or the person you care for, a family member or friend is ~ immunocompromised, and you live in the UK, the best thing that you can do is learn the term "Third Primary Dose". That, and this JCVI (Joint Committee on Vaccination) document, will be your best friend.. 

As I understand it, anyone who's been diagnosed with blood cancer ~ whether on 'Watch and Wait', undergoing treatment or at any time post-treatment ~ falls into the immunocompromised category: i.e. it's extremely doubtful that we'd be able to generate much in the antibody department (while our T-cells may, perhaps, be functional to an extent. I get lost with the science at this point).

If you're not sure about eligibility for this extra vaccination, and even if you are, the gatekeeper (according to the JCVI document) will be your consultant. However, here's the rub - it seems s/he may well not have heard about the extra vaccination either! 

Googling Third Primary Dose and then adding Charities is an edifying experience. You'll see headlines and articles dotted with phrases such as "lack of clarity", "delay", "issues with the rollout", etc, etc.

"Things have gone badly wrong," say Blood Cancer UK. Fewer than 50% of people with blood cancer have been vaccinated, according to their recent survey. Add to this any number of people like me who have blood cancer and didn't know about either the survey or the extra jab!

A Guardian article on 15th October, entitled  "Charities say Covid booster rollout is 'chaotic failure'", quotes Kidney Care UK lamenting "continued confusion" involving "inexcusable exposure to risk".

I first heard about the additional vaccination advice on a Zoe App Webinar Vaccines and the Immunosuppressed on October 28th. 

I was amazed I'd heard nothing about it (especially as I listen to the in-depth Independent Sage broadcast every Friday, regular clips posted by Communicable Disease expert Bharat Pankhania on Twitter and Tim Spector's shorter weekly summary for the Zoe Covid App, among others, and like to feel I'm fairly well informed). 

The panel's comment was that there'd been bad messaging from the Government, and there was a discussion about how the rollout had gone awry. 

Blood Cancer UK comment in their document What should you do if you have a blood cancer and cannot get a third Covid vaccine dose?, coincidentally updated that same day:

"Something has clearly gone badly wrong with the rollout. In some cases, GPs or treating teams haven't been aware that they should be giving people with blood cancer a third dose; other GPs or treating teams want to give people a third dose but are struggling with the process. While we are pleased that the NHS has recognised the urgency of this by writing again to GPs and hospital teams, we remain concerned about everyone getting their invitations".

Almost a fortnight later ~ having heard nothing from anyone either about the boosters that my husband and I, who are both 60, were overdue for, or this additional dose ~ I decided it was time to try to access it for myself. I think a lot of us worry about bothering already overstretched and stressed NHS staff and about queue-jumping (being British!) or appearing pushy. In the case of our health, though, and what could be in the case of some people a life-and-death issue, I think assertive behaviour in a matter like this is fully justified.

I'll tell you what I did, as some of the suggestions I've seen, like getting doctors to fill out forms or rocking up at vaccination centres without an appointment, can either have you running round the houses or walking into a potentially confronting situation knowing you have your letter but still might not convince the staff.

I did try emailing my consultant, via my Trials nurse. But the large Scottish city hospital where the team is based (and presumably other related and relevant departments there too) knew nothing about the JCVI recommendation. 

The GP surgery just told me the local Health Board was doing the vaccinations, and they have nothing to do with it. 

So I decided to call the Health Board.

Having explained the situation, I was immediately given the direct number to the Vaccinations Department. It took some time to get to speak to someone on that line, predictably, but a fairly pleasant tune was playing on a loop and, as each person got sorted, you were told your number in the queue. I started at number 26, and it took about 35 minutes to get through. 

A little psyched in case I'd have to make a case for my request, I was relieved that when I said the key words I'd learned I was straightaway being booked in for an appointment two days later. I managed to schedule my husband's booster at the same time. 

Even so, today ~ the day of the appointment ~ I was again a bit apprehensive. Would I have to plead my case to have the additional jab? Or defend myself for having the temerity to book myself in? I took along my hospital records in case I should be challenged, and had also printed off the JCVI document and other supporting materials.

I didn't need them. I told the nurse respectfully that I believed I was there for my third primary dose. I've found it's never a great idea to begin by seeming as though you know something the professionals don't and, of course, I could always have got the wrong end of the stick somewhere. 

This is where we, as patients, as carers, are being put in an embarrassing and stressful position. We're used to the health professionals being the ones who tell us what's what. How can they, if they haven't been informed, though?

Fortunately, the vaccinator knew the score fully, of course. I guess if the teams giving the jabs themselves didn't know the protocols, we'd really be in trouble! She said she assumed I/'d had cancer, from what I'd said. So she asked me which type. She didn't know what CLL was, so I explained briefly and told her I'd taken two targeted drugs from 2018-2020. 

The nurse confirmed that I was indeed eligible for the additional dose, and expressed concern and frustration about issues with the rollout she's well aware of. I told her I was thinking of writing a blog about the crisis, and she encouraged me to do just that emphasising that the local number in the Dumfries Lockerbie Annan Moffat Castle Douglas area is: 01387 403090. Her advice was to call this number directly, as I did, and make sure you say those three magic words! 

Wherever you live in the UK, though, I guess you can go directly, as I did, to your local Health Board, as the usual system has crumbled due, it seems, to Government failures. 

You may have already had your booster. The nurse explained that this doesn't affect your eligibility for an extra dose. The vaccines are the same (there's not one type for the primary doses and one for the booster. They're interchangeable. In fact, today I was given Pfizer biontech; the first two doses I'd had were AstraZeneca).

The only difference in protocol, she said, is that if you have a third primary dose you will be called for your booster sometime after 8 weeks later. If you have had a booster, you will not be contacted again. But this doesn't mean you can't call up and arrange the additional dose yourself. 

As I write this, I am aware that I am very much at the 'well' end of the spectrum in the immunocompromised category. The course of targeted drugs has restored me, to all intents and purposes, to health. I feel well, I can walk miles and do anything I did before, really. I am incredibly grateful for this new lease of life and fully aware of how fortunate I am. I know that I can't take any of this for granted. None of us know what tomorrow might bring, and besides that I'm still on the Trial for the next three years. All of these drugs are still to an extent experimental.I just don't want to get sick if I can help it. 

With two other vulnerable people in my household as well, if I got sick it wouldn't necessarily be just about me. And with the very real (is it around 10%?) risk of developing Long Covid, and the outside chance even for the fully vaccinated of serious illness and even death, I really don't want my 24-year-old daughter contracting this virus either. 

If this is the first time you've heard about the extra jab (always assuming you want it!), or you've been waiting to be called up, I would strongly advise you ~ based on my experience ~ to think about making the first move. 

It really frightens me to think that lives can be depending on people accessing this additional jab.


However, here's the usual disclaimer ...

                             CAUTION! 

I'm not a medical professional. I'm a patient, and unpaid carer. These are just my personal observations and concerns, and I'm describing my own experience and what worked for me here.

It really is a very good idea to run this whole issue by your consultant and hospital team,  even if it means shocking them by filling them in on something they haven't been told yet! 

The JCVI document points out that in many situations, especially where people are currently having treatment, the timing of vaccinations will be important and could be critical. 

You may need to check out whether you officially fit into the 'immunocompromised' category too and, if your condition is not clearly listed, your hospital team may need to make a case for you.

 

For Your Reference: 


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