I have followed the recent guidance from MPN Voice and Blood Cancer UK advise letters with regards to securing a “Third Primary Dose” Vaccine by further contacting my haematology team.
I enclosed all three letters, MPN Voice, Blood Cancer UK and the JCVI recommendation letter to all hospitals and GP Practices.
I have just received a reply from my “locum haematologist” which was brief and to the point,
“You will be receiving a third booster vaccine, as you are entitled by age. You are not immunosuppressed by MPN/ET and hydroxycarbamide treatment.”
I take it from this he/she has not read any of the letters or if so, does not agree?
It is 180 days tomorrow since my second dose vaccine. I still have not heard anything. I am at a loss as where to go from here. I wish I was under the care of Guys and St Thomas’ hospital.
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mhos61
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Hi Mary,This is just such a lottery regarding who gets what. My hemo registrar - like yours - assured me that being ET and on Hydroxycarbamide does not mean that I'm immunosupressed. My GP accepts that I am but has done nothing to procure my 3rd dose and refuses to discuss it as "I will be informed when they are able to do it". Very helpful
😡Then out of the blue I got an email from NHS telling me I can book it - I got jabbed the following day!
I think the answer for me at least is, grab the vaccine (whatever title it’s given) when it’s offered, and battle for the booster six months down the line. 👍xx
Why do Drs not read letters? The ones I sent, I even highlighted the relevant sentences so they didn’t need to read the whole thing! I’ve had my third dose/ booster now and will worry about the one in six months if I am still here. I’ve had no after effects, as with the first two si whether I have any antibodies is anyone’s guess.Have a good day Mary 💐
I was offered the booster and I am 49 but my appointment clashed with actually being in isolation with covid. I wasn't terribly unwell but I wasn't asymptomatic either and a week since coming out, I can tell it has definitely affected my breathing. Got to wait a couple more weeks before I can get rebooted but at least I should have plenty of immunity
Very similar to my experience. Like I said on a previous post why aren't the vaccination centres being sent the letters direct as well as us. It is so frustrating trying to explain and you feel that you're a nuisance and quarrelsome.
I had to fight extremely hard to be rightly recognised as “clinically extremely vulnerable “ for the purpose of being placed in group 4 for vaccination...now this too!
Like you say, I feel a nuisance and a ‘complainer.’ But I also have a bee in my bonnet. I have emailed the British Haematology Society for their views.
All a struggle isn’t it? - I’m giving them till next week (all info + jcvi prints hand delivered to GP surgery and to the hospital for the consultant - not a peep from either) - next stop will be a phone call to the ccg for the area. It gets demoralising when we know certain areas/hospitals are absolutely ‘on it’ for their patients. Good luck with it all. Anne-Marie x
I’m with an amazing GO practise but they failed to prioritise me. I decided to be patient. I then showed them info which has now prioritised me but they are making me wait 6 months before booster or 3rd vaccine. 🥴🥴
For what it's worth, I have ET on hydroxy and have been told by hospital I will get 3rd primary dose ( although the how and when is still to be confirmed) so there is definitely not a consensus. From my own experience of even a cold knocking me out for weeks I do believe we are immune compromised
I'm sorry to hear of your difficulties, like lots of others posting on this topic. This probably won't help you but I've had a very good experience and I think it's right to praise when it's deserved.
I'm under St. James' Hospital in Leeds and received a letter from Haematology last Tuesday telling me I'm eligible for the 3rd primary dose and giving the details of how to book. The letter made it very clear that I fall in the immunocompromised group (I was added to the CEV / shielding list this February after a bit of a battle) and that it's likely I'll get a booster dose in 6 months time. I do recall when I spoke to Blood Cancer UK last year being told that anyone with any form of blood cancer is immunocompromised to some degree.
Anyway, I duly phoned the booking line last Wednesday - bit of a faff waiting 30 mins in a queue but at least it told me my position - and had the vaccination yesterday at the Leeds Vaccination Centre next to Leeds United football ground. I went armed with my letter and the MPN Voice and Blood Cancer UK documents (as previously advised by others here so thanks for that guidance) prepared for battle but it worked like a dream. They all knew I was there for a third primary vaccination (the nurse emphasised this), not a booster, was asked lots of questions about my circumstances and previous experience with the A-Z vaccine but I most impressed and it all went very smoothly with helpful and pleasant staff. I was given the Pfizer vaccine.
It does appear to be a complete lottery across the country but perhaps those struggling can use the argument that "well Leeds Teaching Hospitals is doing it so it must be right" might sway things. The NHS is notorious for only doing something if others are doing it so you never know.
Hi PaulI'm in agreement with you, and have had a very similar experience to you, down here in Tamworth.
I had a real fight to get added to the 'at risk' list all through the first lock down, but got there eventually.
Since then, I cannot fault my treatment and received two separate invitations last week to book my 3rd vaccination - one from the NHS, and one directly from my GP.
Booked everything online. Plenty of choice for appointments, too - so credit where it's due, and good luck to those who are still having difficulties.
Good to hear you've had a good experience although like you it was a struggle for me to get added to the CEV list. We appear to be in the minority sadly regarding the third vaccination but at least it shows that some areas are on the ball. Shame it isn't widespread.
How lucky you and others are to have the required support from your health care providers. Unfortunately, it has all been a battle for me.
There’s nothing more I’d love than an excuse to indulge in some shopping therapy at the ‘White Rose’ shopping centre or, Leeds city centre. I could even combine it with a visit to the LUFC merchandise shop. My son is an avid Leeds supporter!
Sadly this place is bookings only otherwise you could stand at the entrance at look desperate and then have retail therapy! Sorry though about your and others' battles - it really shouldn't be like this but was it ever thus sadly. If I had been trying to do this via my GP I don't know what would have happened as it is still very difficult to get to actually speak to a person.
I’m under them too, and got the letter saying to get the third dose. Haven’t managed to get through on the phone yet, keeps telling me that there’are no agents available at the moment’. Will keep trying, at least our haematology department agrees with the latest science, unlike many on here it seems!
Ah, I only had to wait when I phoned, started at queue position 8 and then it went down to one (I think I phoned around lunchtime but was soon after receipt of the letter). My problem was that I didn't really understand what the booking person was saying as I suspect English wasn't their first language and had to keep asking them to repeat. Once booked I got the text through within a minute confirming the booking but then an automated phone call later on asking me for my feedback after my visit to the daycare unit at another hospital. Oops!
Perhaps it was that hospital's daycare unit handling the booking process.
Well once you get booked hopefully your visit to the vaccination centre will go smoothly.
Also somewhere on blood cancer UK website there is the early results of study in vaccine response in blood cancer patients and ET patients on hydroxy do not mount good response ( small group , early results) so our concerns are not unfounded. Might be worth showing to drs
I took the letters to my GP and was told the booster is the same as the 3rd vaccine. Didn’t argue because the next day I was taking my husband for his booster, he is over 80. I asked the Doctor at the vaccination clinic and he said as long as the booster is Pfizer it is a 3rd vaccination. I must wait until it is 6 months from my last vaccination. Not long.
My Haem team told me letters were going out imminently (nearly two weeks ago) I have chased and have been told to give it another week. So .. my plan is to leave it until then (hoping I don't pick up covid from my school age children before then) and if I still haven't received anything to go to the CCG. Each CCG has a complaints email address and, when I had to chase for my daughter to be vaccinated, they do respond and do seem to be aware of the up to date guidance. They may also have a struggle to get GPs and Hospitals to take notice but they can help fight your corner. It is definitely worth a try if you have exhausted all other avenues.
I have already contacted the CCG. They contacted my GPs Practice to ask them to phone me, as they cannot make the decision ‘which’ vaccine I get.
The GPs called when I was out yesterday. I’m reluctant to phone them, as it’s always 40+ minutes waiting to get through, so thought I’d wait for their call.
However, as I was reading your post I received an email from the CCG to ask had they contacted me. I explained to them in an email, and they have sent a further request for them to contact me.
This will be a discussion about Primary Third Dose, which I think they haven’t got a clue about. I also think contacting my “locum haematologist” has done me no favours!
🥴 I’m confused regarding my position at my GP surgery I am luckily enough under Guy’s I’ve decided to make an appointment and make the very long trip there and back and be at peace knowing I’ve had the right jab.
I totally sympathise. I too haven't had my 3rd dose letter or text so checked with my GP surgery and was told to wait because they are trying to do the flu vaccine and the 3rd dose together. Perhaps that's why you've not heard? I I hope the wait won't be too long. Enjoy you weekend😁
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