So....after two years of being super-careful, we have become a plague household and all caught Covid. I thought I'd share my experience of testing and accessing antivirals. I'm in Scotland, have ET and am on Hydroxy. Have had all four vaccines. After doing a positive LFT (which I had at home as we've been squirreling away boxes from school), I called 111 and was advised to get a PCR then call back once done. Booked a drive-through next morning then called again. Went through a series of questions,told them I had an MPN blood cancer, and was advised I'd likely be eligible for antivirals and a clinician would call me back. Right enough, a few hours later the call came. Nice chap but he said he wasn't quite sure so had contacted my Hem, who'd advised 'no', MPN's weren't on the list of eligibility so I couldn't have an antiviral. Was told to stay home, rest and take paracetamol. I was a bit surprised as I'd thought having an MPN and being on active treatment would qualify me. I put a call in directly to my Hem who confirmed his decision, saying MPN's were definitely not on the list.
Thankfully, I'm not feeling too bad. I'm guessing it's the milder, Omi variant, so just feels like having a bad cold or flu. I'm so-ooo glad I've had the vaccines though (my 4th being just 12 weeks ago).
Overall, I thinks there's still quite a lot of confusion out there so my advice is don't assume you'll get an antiviral just because you have an MPN, even if on active treatment - it seems not!
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DENICE66
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Oh Tartanlady, the 'system' certainly seems to be letting you down :(( Have you tried just booking online directly through nhsinform.scot or going to a walk in? That's what I did. Printed the vaccine letter from Blood Cancer UK website and took it along, just incase, but no-one queried anything and got my 4th jab no problem. I'm not sure I'd be getting through Covid so lightly if I wasn't fully vacc'd so please be proactive and take care!
Denice helpfully gave me the same advice late December when I mentioned waiting for a letter for the 4th vaccine. I don't know if it would ever have appeared but I just booked one online with no problems and the vaccinator immediately confirmed I was there for the 4th.
Blood Cancer UK's site says: " If you still haven’t had your first booster (4th dose) by March 2022, you can have this as part of the Spring campaign instead. You’ll then have your 5th dose in Autumn".
Now again NHS Inform and NHS Lothian say we will be contacted about the 5th one - nothing to date and I will probably be pro-active again and not wait when my 3 months is up next week. There are plenty of appointments online here.
I've never been invited for a 4th jab. My son in law is on immunosuppressants and he had his about 4 weeks ago. Don't know if I'll get a call when they start the over 75 and other groups in a few weeks. I'm in Wales, where it is very hit and miss.
What bad luck after all your care and I really hope you feel better soon. Very dispiriting though about the anti virals and it doesn't seem to be a level playing field . I'm sure there have been posts from down south about them being given. I think someone asked a few weeks ago whether anyone in Scotland had got them and disappointingly there were no replies.
The only person I've heard of getting them in Scotland is a friend's son with MS. NHS Grampian prescribed them for him.
Yes DJK, I'd seen posts where MPN-er's seem to have got antivirals in England, but none in Scotland as far as I'm aware, so it does seem inconsistent - but not, sadly, surprising. Like you, I'm going to be proactive about my 5th jab. Sometimes I get a letter, sometimes I don't, so I won't be relying on the system. I don't feel any worse with Covid today so finger's crossed that's a good sign :))
Hi DENICE66I'm sorry to hear you've been caught by Covid. I like you have been extremely careful over the last few years, but also have Covid. I have ET.
I called 111 following a positive LFT. My experience was very good. I explained I had ET a MPN. They said I would get a call back within 24 hours. Sure enough, a few hours later a doctor called me, asked some questions, said he check with my hemo. Anyway, to cut a long story short, I was booked the next day for the antibody infusion, as they said I was clinically eligible.
I was booked for nine the next day. Had the infusion and back home by 12 noon. I'm so sorry to hear that others are having such hard time accessing a service that should be available to all those who are clinically vulnerable.
It's a shame this service is not centralised to those that need it.
I’m in Scotland too , haven’t had Covid but called the hotline to check procedure and eligibility, they said I was , I have PV and on Rux though, ie a immunosuppressive, not sure how much difference that makes
That's interesting Ainslie. Maybe it's the treatment that's the deciding factor, rater than the condition - although I always thought Hydroxy had immunosupressant effects, albeit milder than Rux. Hope you keep well.
Hi Denice -thanks for your post & at least you are coming out of the other side ok & had all your vaccines. We are surrounded by covid here in the East Midlands just now.Pity you didn't get the back-up you should have had - wonder what would have happened with your treatment if you hadn't recovered so well? Stay safe & I hope your family are all ok too.
It appears to be everywhere just now Annula and somehow, 200+ deaths a day seems to have become the norm for 'living with it'. I think what surprised me most was that my Hem didn't check how I actually was before saying no, so it feels like a tick-box, rather than a clinical, judgement. Thankfully my symptoms are easing now so think I'm through the worst, and will hopefully have some extra antibodies too! Hope you keep safe and well.
Thanks for your reply Denice -I think rather than following specific guidelines, it's left to the patient to flag problems & hope the clinician gives the response which will see you out of the other side! And of course we can pray for divine intervention too!! 🙏🙏
Hi. My understanding is that catching the actual virus gives a much better outcome overall for your immune system albeit that you get through the illness unscathed. Good luck
Getting infected and also vaxed is "hybrid" immunity. It is the best protection on average. If you've had misfortune to get infected and not yet vaxed, it is a good opportunity to gain this best protection by getting vaxed too. I and my husband have hybrid. But I don't recommend it. Long covid and worse (our experience) are not good. We caught it early Mar 2020 before even testing was available.
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should I accept antivirals
Access to Prof Harrison's presentation on ET
Access to Blood Test results on line.
Post Covid infection - nearly 4 weeks since positive test and treated with antivirals - have ET and still feel awful 
UPDATE FOR MPN PATIENTS IN ENGLAND RE:- Fast access to COVID medicines for people with blood cancer
