I’m upset.

A few weeks ago, I mentioned that Terry and I would both be eligible for the swine flu vaccination when it became available: Terry because he is in a high risk group for serious complications (read: death) if he caught this flu, and me because I live with him and could pass it on.

Well, last week our area finally got some supplies of the H1N1 vaccine. And they’re refusing to give it to either of us. Terry called his doctor’s surgery three times last week. Each time he was told that, why, of COURSE he couldn’t have the vaccine! Only pregnant women can get the vaccine, because obviously only pregnant women can die from flu, d’uh!

Now, before I go any further here, I should first of all say that I’m all for pregnant women being vaccinated. Of course I am. They do seem to be at higher risk than most of us, and so obviously they should be one of the priority groups. ONE of the priority groups. Because, actually, pregnant women aren’t the ONLY people at serious risk from swine flu – or any other flu, for that matter. Absolutely not. Terry is a transplant recipient. Every day he takes immunosuppressants which basically leave him with no immune system whatsoever. A bad dose of flu could be really serious for him, and that’s not just my paranoia speaking: it’s what we’ve been told by Terry’s doctors, and it’s why he gets the regular flu jab every year.

He’s not getting this one, though. Because he’s not pregnant. On Friday, his doctor called him and said that, contrary to the information the NHS have been churning out for months now about how they will be offering the vaccination to people with chronic health conditions, where we live they will ONLY vaccinate pregnant women . Our health centre, which serves a population of tens of thousands of people, you see, was only given 100 doses of the vaccine and they’ve decided to use it on pregnant women only. (For the moment, anyway. If and when they get any more supplies of the vaccine, they might think about giving it to people with serious underlying health conditions, but only if there are no pregnant people to give it to first.)

And the reason for this?

The media.

Yes, Terry’s doctor admitted to him that although Terry is in a high risk group and should be given the vaccine, media pressure has forced the NHS here to make the decision only to vaccinate pregnant women. This is despite the following information, from the NHS’s own website  :

I’m on immunosuppressants. Am I more at risk of catching swine flu?
Yes. If you take immunosuppressants you have a greater risk of becoming infected with any virus, including swine flu, and will be less able to fight it off once you have it.

That’s what they say on their website. What they say in real life, however, is basically, “Good luck with that! Hope you survive the winter!” In other words: screw you.

I’m not bothered about getting the vaccine myself at this point. I would take it if it was offered, but I agree that there are people who need it more than I do. There aren’t many people who need it more than Terry does, though, and I just can’t understand why he should be refused it just because the media says so. Hell, lots of other people with chronic health problems have ALREADY been vaccinated in other parts of the county, but where we live we’ve had to wait until November to get any vaccine at all, and even then we only get enough for 100 people, all of whom must be pregnant to qualify. And that’s fair HOW?

So, I’m pretty disgusted – to put it mildly – that, by their own admission, the NHS is more interested in what the media says about them than in actually saving people’s lives. I’m outraged to find that the media now apparently gets to make important decisions on health care. But most of all, I’m just really, really frightened about what will happen if Terry gets this bug. This is the reality of life with a transplant for us. The fear never really goes away. You don’t just get the transplant and then go back to living a normal life. You have to spend the rest of your life worrying about it, and fighting endless battles to get the care you need. We don’t even have the option of going private and paying for the vaccine (which we would resent, but would do if we had to) because the private sector don’t have it, apparently. So we’re at the mercy of the NHS once again.

Terry has emailed his consultant at the hospital and asked what, if anything, can be done now. His consultant sounded almost as shocked as we were to be told that Terry “isn’t on the priority list” and confirmed that, yes, OF COURSE he should be offered this vaccine. He’s going to look into it and see what he can do to help. I’m just hoping the answer isn’t going to be “nothing”.

* Figuratively speaking
  1. This is beyond insulting. He should be top of the list!! They started rolling it out in my area last week, and a few of the mothers at the school gates (who have MILD asthma) have already been offered and received the vaccine.

    Hoping someone sees sense at your local health trust asap! xx

  2. Horrible. I seriously hope that this can be fixed.

    I have asthma and got the vaccine, but 3 days after the shot I was suffering from horrible, 41 celsius fever and was really sick for a week. Then I got to the hospital and found out I also had a severe pneumonia. I had to stay there for a week. I also got a strange fit a few minutes after the vaccine – I twitched a lot and then fainted. So, my trusts on the vaccine aren't so great…

    1. Last time I got a flu vaccine, I had the same thing. I passed out afterwards…at work, since the vaccines were given there. I haven't gotten a flu shot since then. I don't want to have a horrible reaction again, but I do wish they were available to more people who need them.

  3. I saw your mutterings about this on Twitter and was absolutely horrified – I totally expected you to say – oh they made a mistake they have given Terry the vaccine now. For them not to be vaccinating people on immunosuppressants just baffles me. People at my work have already been vaccinated and as the above comment they only have mild asthma.
    This is the National Health Service – which should therefore serve the Nation and treat all of us the same! Just because I live in a different health service area from you doesn't mean I should be entitled to better health care than you and your family. Not really expressing my anger and disbelief very well but my thoughts are with you and I hope that someone gets their ass kicked and Terry gets that vaccine.

  4. Amber I am stunned and disgusted!
    How is a transplant recipient not given the vaccine first.
    In my personal opinion Terry and others like him should be given the vaccine before pregnant women as pregnancy is not an illness it is a choice. Terry didn’t choose to have renal failure.
    I do agree that pregnant women should get the vaccine – I am not saying they shouldn’t but get some priorities (literally) and look at the people that have no immune system before those that are sharing theirs with an unborn baby, at least they have something to fight off infection with?!?

    .-= Mhairi´s last blog ..Happy Halloween! =-.

  5. I hope Terry gets the vaccine soon. The NHS have always been fairly boggling in their treatment. Mention it to the media?

    "Others like him should be given the vaccine before pregnant women as pregnancy is not an illness it is a choice." That's unfair. Catching swine flu isn't exactly a choice, is it.

    1. Hey Camilla

      I didn't mean it the way I wrote that comment.

      What was meant was that people with life threatening conditions, or those that have had transplants to combat these kinds of conditons should be placed above those that still have some kind of immune system.

      I think this is what I meant "Terry and his non-existant immune system should certainly have priority on this vaccine over an entirely healthy woman who happens to be pregnant." Gem put it better than I did.

      I have no problem with pregnant women being vaccinated – their immune system is being shared between 2 people and that is vitally important. But it is more important to vaccinate those that have no immune system before those that have a lowered one.

      I hope that makes sense. I wasn't trying to offend anyone – just give my opinion. I might not have put it across very well.
      .-= Mhairi´s last blog ..Happy Halloween! =-.

      1. But the swine flu strain isn't recognised by immune systems so it does not matter if you are a healthy women. Stats show that a large number of swine flu deaths in this country have been in pregnant women. Flu affects the lungs and when you have a baby squishing them, that does compromise your ability to fight off flu and can cause further health problems such as pneumonia. Fact is, pregnant women are in a high risk group just the same as other immune suppressed people. Even the nurse below says that out of the 15 she's treated, one was pregnant and none were transplant patients.

        Perhaps what should have been said was 'everyone deserves the vaccine' instead of bashing one group to make a point. Hoshi has got it spot on, equal consideration, no more, no less.
        .-= Camilla´s last blog ..Welcome =-.

        1. I'm very sure Mhairi wasn't trying to bash or offend anyone. She's a good friend of ours, and I'm sure she was just outraged on Terry's behalf and trying to offer support, which is appreciated.

          I also didn't take Leanne's comment to mean that transplant patients aren't at risk and pregnant women are – I thought she was saying that pregnant women are just one of a number of groups who are at high risk from this flu, but I may be misreading. Either way, I'm not asking or expecting Terry to get better treatment than anyone else who is vulnerable (and I agree that pregnant women are) – I'm just asking for the same consideration, and at the time I wrote this post, he wasn't getting that.

          Group hug?

          1. You're right, Amber. Pregnant women are just another group of people that are susceptible to swine flu. Interestingly, it's because the immune system in pregnant women is lower than in your average woman of the same age and health situation, because the body has to reduce its immune response in order not to reject the foreign body, i.e. the foetus. But yes, a transplant recipient on immuno-suppressants would have next to no immune system…otherwise their body would simply reject the transplanted organ. If I recall rightly (the whole swine flu thing really hit our state bad around May to June), the majority of our patients were obese with the resultant diabetes. The others were heavy smokers (even if they were otherwise healthy except for bad smoker lungs) and all were young (under 45). I can't remember any cancer patients coming to us. That being said, I'm not sure what was happening in the rest of the hospital…I can only speak for intensive care. I hope that kind of clarifies what I meant, I didn't mean to offend/confuse anyone 🙂

            1. The media has probably done what it has done because people would get more heated and emotional over a pregnant woman dying of swine flu than say, a cancer/chemo patient or a transplant recipient. Wrong and shameful as it is, but people in general probably can relate to/know a pregnant woman as opposed to a transplant recipient or cancer/chemo patient. If anything, I'd say people on immuno-suppressants and chemo are at higher risk to swine as opposed to pregnant women although they are still in the 'high risk' category…just my 2cents though.

              That being said…there are probably many more overweight/obese and diabetic people out there, which seems to be a pretty big risk factor but no one is pushing the vaccine to them either (but hey, lifestyle choices etc) 😉

        2. The facts and figures of who has been dying of the swine flu are still very uncertain as the media and the government have been trying their damndest to keep everyone in the dark. So none of us can really be sure of the statistics of who is most at risk

          Given conversations I've had with my consultant and GP it is clear to me that they both think people on immunosuppressants as well as people with suppressed immune systems (like chemotherapy patients) are at a higher risk than pregnant women. I have a very decent understanding of the immune system and I can't fathom why someone who is pregnant would be first on the list, they should certainly be high, but not first. I personally do agree with equal treatment for all but I am sure we all agree when stocks of vaccine are small then the people at the top of the priority list should be those most at risk and not those that the media are most likely to get a story out of. As I said my point of view is based on the opinions of the medical professionals I speak to (and the scant statistics that are currently available). If statistics showed that the most at risk group were Londoner's with one leg and blonde hair I would have no problem with them being given the vaccine first.

          Anyway! Thankfully there has been a cancellation for tomorrow, and as the vaccine only has a 48 hour shelf life they have to use it up. So they have asked me to come in and get vaccinated.

  6. I cannot believe this but it is typical of the NHS I've grown to hate and hate even more.

    If I were pregnant now, there is absolutely no way I'd have any injection whatsoever, unless it was a life or death situation. Seems to me that if they are 'saving' the vaccine just for pregnant women, they may be left with some on their hands. And also one or two deaths. But they won't care because 'they' won't be affected. It makes me so angry!!! I do hope Terry's consultant can help – what a terrible jobsworth attitude.

  7. Pretty much the same thing is happening here in the US. They are only giving the vaccine to pregnant women right now. My mom should have one as she has cancer so is immunosuppressed due to the treatments she's had, but she can't get one. She isn't undergoing any chemo right now but has no immunity so she gets sick easily. She's sick right now. It's so frustrating that people who need it can't get it.

  8. That's really awful – I hope Terry's consultant is able to kick up enough of a fuss that he is offered it after all, or that new supplies soon become available. I'm generally very supportive of the NHS but they have a responsibility to vulnerable patients and it's infuriating that they aren't pulling through over something as petty as media concerns. Not only that but it seems that the postcode lottery strikes again!

    I'm seriously asthmatic to the point that a chest infection could bump me off but I've not heard anything from my doctor's surgery about the vaccine, despite having been given the regular flu jab for years – however, at least my immune system is fairly normal so I'm not that worried. People like Terry with compromised immune systems deserve priority.

  9. Unbelievable.

    I agree with Wendy, spread the word!!

    And maybe the thought that you work from home helps, because it might be easier for you to avoid crowds!

    I got the vaccine today (as you might know I live in southern Germany) in the morning, my arm hurts but otherwise I am fine. And I'm healthy – no transplant, not even an allergy.

    If I could've "sent" my flu shot to Terry instead, I totally would have.

    I am really scared of that freaking disease and I'll pray for you so that you'll get it ASAP!! Both of you!

    I'm sorry I can only offer words and wishes and not more.

    Thinking of you and Terry!!
    .-= Nina´s last blog ..She’s thinkin’: How did I get here? =-.

  10. Wendy makes a good point. There must be many more people in Terry's position among those tens of thousands served by your health centre, and is that health centre the only one making this decision?

    I do hope his consultant manages to kick some bums and and get the whole thing sorted out – you two could do with something going right for a change…

  11. This is definitely a 'local trust' decision not NHS as a whole – I've got mild asthma and I'm getting my shot next weekend (although not keen now after reading the side effects on here!).

    I'd offer Terry mine but I think they'd suss him when it said 'Mrs' on the invitation.

    Perhaps a good time to reprise the Wino outfit??

  12. I’ve been reading your blogs for a while, but this is the first time I’ve been spurred into commenting. Really, a man with the health problems faced by Terry and his non-existant immune system should certainly have priority on this vaccine over an entirely healthy woman who happens to be pregnant.

    I could type more, but it would most certainly turn into a rant – so I will refrain (for now)

  13. Hi Amber

    Don't wasnt to wind you up even more but my Mum has just told me that whilst they were away at the weekend the stopped off at a Tesco in Birmingham and they were selling the vaccine. With bonus clubcard points of all things.

    Fancy a trip to Birmingham?

    I agree with some of the others – use the media to highlight this. I bet they would be very interested indeed.

    .-= Mhairi´s last blog ..Happy Halloween! =-.

  14. And not to make you any more annoyed, but the Australian government has bought enough vaccine for the whole country and, apart from people who really need it of course, not that many people have taken up the offer to have it (including myself and most people I know). Do you want me to nip to the local doctor, pick up my vaccine and mail it to you? I hope your specialist can sort this mess for you soon.
    .-= Louise´s last blog ..P.S. =-.

  15. Hi Amber,

    Shame on the NHS! I'm an intensive care nurse at a quaternary level hospital and out of 15 the swine patients that we admitted (so on maximal life support), only one was pregnant. Fortunately none were transplant recipients but Terry should absolutely be at the front of the line to receive the vaccine. In Australia, the vaccine is available to everyone for free yet the uptake hasn't been high…if I could send you ours I would!

    I agree with everyone else here, shame the NHS and the media through their own devices.

  16. I’m disgusted by this, Amber. It’s just stupid and nonsensical.

    I can only echo what others have said in that contacting the media is a good idea (The Guardian’s Comment is Free blog, the local paper, etc). Also, I hope you’ll write to the health secretary about this. And fingers crossed for the consultant! xx

  17. My advice for your health- drink lots of fruit juice and green tea, sleep as much as possible, and make hand sanitizer/soap your new best friend.

    And my thoughts on pregnant women and transplant patients- they should be given equal consideration, no more, no less. ^^

  18. I hope you and Terry (especially Terry) manage to get vaccinated. I live in the U.S. and health care is totally messed up over here, but I expected more of the NHS.

    I got a regular flu shot in September and apparently, even that vaccine is in short supply. My co-worker was calling around last week to get one and the only places that still had it only offered it to local residents who could show proof of ID.

  19. It's pretty bad in America– all schools are pressuring us to get the vaccine, and I'm not supposed to! They rushed testing…

  20. Excuse me? I just can't believe that!! Of course pregnant women are a risk group (I happen to be 7 months pregnant and I'm glad I got the vaccine) but clearly, transplant patients are a risk group, too! Why would we choose to protect one risk group and not another? The vaccine must be available to everyone with risk groups being priority.

    The whole process was a mess here (Switzerland), too, with every region and every authority saying something different which completely confused people. It was said by the ministry for public health that husbands/partners of pregnant women should get immunised, too, at the same time as their partners, but then they were being sent away from medical centres since they were not at risk themselves…

    Luckily, the vaccine is now availabe to everyone.

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