How do we get our 3rd primary vaccine in the UK.... - MPN Voice

MPN Voice

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How do we get our 3rd primary vaccine in the UK. I'm banging my head against a brick wall.

MCW22 profile image

How on earth are we supposed to get this 3rd primary vaccine? No one wants to take responsibility, they all say it's not down to them.

My haematologist didn't know anything about it until I told him and he agreed to add to the letter he sends to my Gp that I should have it. That was over 2 weeks ago and I've not heard anything. I contacted my gp surgery and finally got it through to the person replying to my messages that I wasn't talking about the booster, however she still said it wasn't down to them despite me reading out the blood cancer UK letter to her. You can't book the 3rd primary dose on the NHS website, 119 couldn't book it, you can't go to a walk in centre. How the hell do we get it? When she couldn't offer a solution I asked for a telephone appointment to speak to my Gp. This is going to be on Thursday.

Are others being fobbed off like this?

Carol.

54 Replies

Hello Carol. I contacted my GP surgery this morning and they telephoned me back this evening saying I can go on Friday this week for my 3rd vaccine. Good luck with your appointment on Thursday. They should be offering you a date for your 3rd vaccination. Take care x

MCW22 profile image
MCW22 in reply to Maisie10

This is how it should be, but my surgery just don't want to know. I had all this when I had to fight with them to get recognised as clinically extremely vulnerable.

Jellybean129 profile image
Jellybean129 in reply to MCW22

Same here 🤷‍♀️

Hi CarolNo you are not alone. I dropped a letter into my GP last week and included the two letters from MPN Voice and Blood Cancer UK requesting a third vaccination.

This was the email reply today:

"I have sought advice on how best to get you a 3rd COVID Vaccination as your records show you do not currently meet the criteria as laid down by the government, however in a bid to help you we are still awaiting deliveries for COVID Boosters and unlikely to start until begining of NOvember to organise clinics. If you cannot wait that long I have been assured that the 3rd COVID Dose is exactly the same as a COVID Booster dosage so you could try calling 119 or going on government website to book a COVID vaccination booster. If you have no luck there please email ........ FAO Practice Manager who will add your name to waiting list for COVID Vaccs."

This isn't the first time I have banged heads with my GP surgery, who seem stuck in the stone age, and I've just about had enough of them. Tomorrow I'm going to call the Haemo department at my local hospital to see if I have any better luck but I'm not going to hold my breath - none of the haemos there are MPN specialists and my so-called telephone appointments are a complete joke.

Good luck with your GP appointment and I'd suggest you go armed with all the letters and the explanation that the booster is NOT the same as the 3rd jab.

Sorry for the rant 🤭

Gill

I emailed the letters to my GP, explaining I was advised to have a third vaccine. Much the same result, just a reply that it would be passed on to management, and that the case number had been closed with no reply needed! Unfortunately the vaccination hub in our town has now been closed, and our GP doesn’t do them either. No idea where to go from here. When the govt is begging people to ‘get the jab’ why is it proving so difficult to get the protection we need?

It's so frustrating isn't it? Could you contact your Haemo team to see if they could arrange it? Mine arranged my 1st and 2nd jabs as my GP didn't want to know.

I hope you have some luck - it's bad enough trying to make people understand our condition without some medical staff doing exactly the same thing!

Gillx

MCW22 profile image
MCW22 in reply to Jellybean129

I tried them and they had never heard of it but agreed to write to my Gp saying that I should have a 3rd dose. Not heard a dicky bird since. That was over 2 weeks ago.

I’m a different Gill but I have had the same treatment. I went to the centre having discussed this with my doctors first and a stroppy doctor at the COVID centre wouldn’t listen saying that they were giving the booster as second doses of vaccination so it was the same strength as a vaccination.In the end I gave in and had the booster or vaccination. Who knows what it is. I am now going to write to my surgery asking them to book me in for my booster in 8 weeks time as advised by NHS England.I was made to look demanding and since we are meant to be treating the NHS with great reverence unthoughtful. My own daughter son in law and granddaughter are doctors so I do usually respect the NHS. Hope others fare better

Hi GillFrom what I understand, if you have the Pfizer it is good as a third dose as it is full strength - just the Moderna seems to be a smaller 'booster' dose. Anybody correct me if I'm wrong!

It seems to be an uphill battle for many on here at the moment which I can't understand - the letters from MPN Voice and Blood Cancer UK state so clearly that anyone with blood cancer, on meds or not, should have the 3rd jab followed by the booster 8 weeks later.

I sent rather a blunt reply to my GP surgery today, basically asking them to check the facts before issuing their wisdom. I know they are busy but giving out wrong information is worse than not replying at all!

Anyway, tomorrow is another day and possibly another battle but hey ho!

Gill x

I've just delivered a copy of the MPN Voice letter to my surgery. This should be good enough, and if it's Pfizer again it won't matter whether it is the third jab as the third jab and the booster are the same using that brand. I suspect lack of HGV drivers is delaying things somewhat.

I contacted the blood cancer UK helpline and was advised the quickest way to get it is to go for a BOOSTER but make sure it's NOT moderna as that's only a half dose.

Manouche profile image
Manouche in reply to MCW22

Moderna is made of 100mcg of RNA. The Pfizer contains only 30mcg of RNA. Therefore a half dose of Moderna still has more RNA than the Pfizer. Why a third dose of Moderna would be less effective ? Where’s the logic ?

MCW22 profile image
MCW22 in reply to Manouche

No idea but blood cancer UK said not to accept moderna due to it only being a half dose but at this rate I'm not getting any dose

Hello MCW22 and sorry you have had some hassles re third jab - it's a bit soul destroying isn't it, as if we would be asking for something if not advised to have it?! It is quite shocking the lack of communication amongst elements of the medical field isn't it!!Anyway I DID go to a local walk in vaccination centre armed with my MPN Voice letter which was my sole "passport" to getting the vaccine, although not one person at the centre all the way up the ladder had heard of it, they were so helpful - the vaccination hub in my city does have the reputation of being very kind and helpful and they lived up to their reputation.

So I went with some advice from a patient over on the Blood Cancer UK forum and did the following as he suggested

1. Go on to the NHS website and find a local walk-in vaccination centre, ideally one near a hospital or a large one and ignore if their website says "we are only doing ......... vaccines" The vaccine centres are tending to all use Pfizer which is helpful too

2. Get your MPN Voice letter printed off, along with the Blood Cancer UK , any ID re your condition eg MPN Voice ID card, your hospital appointment letter etc

3. When you get to the centre right from the helpers on the door explain you are a cancer patient, are here to get a third primary dose, hand over the MPN letter and hopefully you will get the immediate kind assistance I did. I did have to repeat the story every step of the way but all with kindness and desire to help and the letter spoke for me each time, with notes being typed onto my NHS record by several staff all from the MPN Voice letter.

4. When you get to the jab part ask the staff to please record manually that this is a third dose (this will apply too if you do end up just getting it via booster at GP) - say you are aware that there is nothing on the NHS IT at the moment to record a third primary dose (the update apparently keeps being pending ) so could it be recorded code wide as a booster but your charity advises to also put a manual note as well that it's a third primary dose for blood cancer patient so it's on record and will enable you to get the usual booster in six months time. The staff also wrote out my vaccine record card noting it was a third dose.

I hope that may work for you too as I do understand your frustration, actually it is upsetting isn't it as we are living in this pandemic in unusual circumstances and to not be heard from those that should is hurtful. I must admit I bypassed and didn't try my GP or consultant team - who are both usually brilliant - as I thought if they have not contacted me, invariably they are not organising anything and I haven't got the strength to go round and round in circles. The above worked for me, I am in a city with a huge vaccine hub and as I say fortunately it has the reputation of being brilliant , I do hope you get the same. All the best

Joetcalr profile image
Joetcalr in reply to Helpatlast

Do you mind if I ask which big city? I tried 119, no luck, but they were pleasant

piggie50 profile image
piggie50 in reply to Joetcalr

Where do you live? Have you tried googling, vaccine centre near me? I am in Exeter which is not a particularly big city, but most p,aces have a vaccine centre.Good luck

Judy

Helpatlast profile image
Helpatlast in reply to Joetcalr

119 or the NHS booking online won't be able to helpGo on to the NHS website and search Find a walk-in coronavirus (COVID-19) vaccination site - this will get the nearest one to you

I’m sorry you’re having this hassle, can I be stupid and ask what’s the difference between a ‘booster’ and a ‘3rd Primary’ ? I’ve had my booster which I was txt’d to get from NHS, and simply went to Vaccination Centre and was dealt with very swiftly and carefully. However I have experienced a huge gap in communication between my GP and the Haematology Clinic, perhaps it’s down to budgets?

Eadaoin profile image
Eadaoin in reply to Plavers

I was told I would get a booster 6 months after the 3rd jab.

As a vaccination hub worker please do follow the advice above. Just call in with the information and the team leader will sort out the paperwork and get your 3rd primary dose sorted.

MCW22 profile image
MCW22 in reply to moo196

Tried that, didn't work, was told I would need a letter from gp before they would give it. Gp receptionist insisted there is no such thing as a 3rd primary dose, only booster. I give in. I've had enough and been reduced to tears of frustration.

moo196 profile image
moo196 in reply to MCW22

I'm so sorry that has happened to you. This is how we deal with cases like this at the centre I'm working at. Did you ask to speak to the supervisor at the vaccination centre? With a letter from your consultant?

MCW22 profile image
MCW22 in reply to moo196

The senior nurse came out to speak to me and said she wouldn't do it without a letter from my gp

moo196 profile image
moo196 in reply to MCW22

As well as evidence from your consultant?

CalL1981 profile image
CalL1981 in reply to MCW22

Where do you live?? I was told via text message to walk in at Little Venice Sport centre on Wednesday or Friday afternoons to get it. I ended up at a vaccine centre in Ealing and with the MPN letter was able to get the third vaccine (not a booster). No confirmation or letter from my GP was requested.

Has anyone in Wales had the 3rd dose, as all the information I can find only applies to England.

Borage profile image
Borage in reply to mark382

phw.nhs.wales/topics/immuni...

I hope this will help Mark

I sent the Blood Cancer UK letter and MPN voice one to my GP last week but have had no response. Will chase up again this week but am not expecting it to be straightforward...

Guys Hospital in London are geared up to giving the third doses.

You are not alone Carol. It's all a bit "Kafkaesque." I've taken to bombarding anyone I can think of with emails, attaching the letters from Blood Cancer UK and MPN Voice. If they say "we can't do anything" or tell me to phone 119, I send it to them again. At least I feel I'm doing something.

I have just had a phone call from the doctors surgery to say in reference to the letters I had forwarded them from Mpn voice that they had rang my haematology department and they have been told that my consultant has said that there isn’t a third jab just a booster of phizer I am gobsmacked but will go for it on Saturday !!

piggie50 profile image
piggie50 in reply to Hughley

Unbelievable!

Yet more head banging today. I went to the walk in centre which is next door to my Gp surgery. I showed them the blood cancer UK letter, telling them I was there for the 3rd primary dose. The senior nurse said she couldn't allow me to have it without a letter from my gp authorising it. I went next door to the surgery and got the know it all stroppy receptionist, who of course didn't know anything about a 3rd vaccine, even telling me there was no such thing. She wouldn't accept the blood cancer UK letter because it was printed off the Internet. I asked to speak to the practice manager who was conveniently not available. I gave up and will see what my gp says on Thursday when I have a telephone appointment with him.

Had mine today after sending the MPN email to my practice manager had a blazing row I’d sent 3 emails asking when I could get my booster since beginning of September She booked me in over the phone Friday for today didn’t confirm with text or email where just said grappenhall clinic which I turned up at only to be told it’s not here

I rang the surgery to ask where it was and could I have a post code

I said I normally receive a text with address for confirmation the receptionist told me I was lucky to get the booster as her brother who has cancer hadn’t received his !

I turn up at the right address to be met by the practice manager and told everyone else found it ok to which I replied they probably received a text with the surgery to attend which was 5 miles away she then asked me to thank her for booking me in !

Last year she forgot me for a flu vaccine the year before my HIB vaccine after splenectomy was due at 5 years I got that a year late !

I’ve just emailed a complaint to the GPS who run the practice

Hi - my elderly parents had their fist jabs very early (Jan 2021) and they have been called in by letter and text. So I suspect it is just in the same order as the original jabs, and the clinically vulnerable were about 4th on the top 9 list?

Also I thought I read that there should be a 6 month gap between your last jab and the booster?

Its just not clear though is it.

MCW22 profile image
MCW22 in reply to PrePMFpartner

But I'm not talking about the booster. I'm trying to get the 3rd primary dose of vaccine. Same vaccine different terminology, and if it doesn't get logged on our records as 3rd dose then we won't be called for the booster 6 months after that.

Having read all the horrors on here trying to get 3rd vaccine dose, because I have a review with the practice nurse at gp surgery (by phone of course) on Friday, I have printed off all the information put out there by MPN (thank you MPN) and have it ready to pop round to my surgery and hand in so that all that information is ready for them prior to my appointment. Will be interesting to see what transpires and will keep you posted.

I phoned the gp surgery last Friday so wrote a letter & handed it in together with both the MPN & Blood Cancer UK letters on Monday - this must have worked as I got a txt from my gp surgery yesterday to book with them for a 3rd vaccine as someone identified as immunosuppressed. I am now booked in for mine on Saturday.

I just received a letter from my haematologist telling me I need to get the third dose with booking information Yay! On the day I printed off the MPN and blood cancer letters….

We need the third dose recorded as such so that we get our booster in 6 months time, thats the difference for us with regard to the vaccination process, to ensure our protection is at levels more like people without blood cancer get from 2 doses and a booster.

Yeah, success, eventually managed to get a letter from GP,and just had my 3rd dose at vaccination centre. Thanks MPN Voice and Blood Cancer UK I don’t think I would have got one without your help.

I phoned the GP receptionist on Monday to request the 3rd vaccine dose. Having heard nothing I phoned again this afternoon. The receptionist checked and reported that the GP reply was that there was no third dose and I would be given the booster six months after the previous dose.

I explained that this was incorrect, and that my latest letter from the Department of Health and Social Care, for those clinically extremely vulnerable to Covid, said that we should be offered a third dose, and that GP’s had been informed of this. I said that I had a letter from the Blood Cancer and MPN support groups to confirm this. I offered to take copies of the letters to the surgery.

The —- ——- ——— then informed me that my Doctor knew best. He was a DOCTOR!

I remained polite. If I am lucky I may get a telephone appointment to speak to the GP. I checked which doctor it was, “ So that I could take this further.”

By the time I get this sorted I will be eligible for my booster dose. The battle will then be to get a booster dose in six months.

I know that I am not the only surviving blood cancer patient in the district. We have lost friends since the unvaccinated carer did her rounds. The number of cases here remains high, so I will battle on.

MCW22 profile image
MCW22 in reply to Borage

This is the same attitude I got from my gp receptionist and that's why I requested a phone appointment with the gp himself. I just hope she actually made the appointment. Tomorrow will tell.

UPDATE. I just logged in to patient access and it says I have no upcoming appointments.

I just had a text from GP surgery telling me to book an appointment. Had it 5 months after my 2nd jab

I took the letters to the GP surgery. The helpful receptionist has just telephoned. Doctor still says there is no 3rd Covid vaccinations and to get the booster when it is due. She said that she would ask him again.

I have phoned my Consultant’s secretary who knew nothing about the third dose, so they haven’t been sending any letters out! She said she would ask my Haematologist.

Hurrah! Hurray!

The helpful receptionist, Alison, has just phoned. I am to attend the local vaccination centre as a “walk in” tomorrow. She was struggling with the system to try to book an appointment. She is working there tomorrow and so is my GP, so they will ensure that I get my third dose.

I will take my Haematology appointment letter in case they need details.

I spoke to my Gp yesterday, who of course knew nothing about a 3rd primary dose. At first he tried telling me I may not be in the immunosuppressed category but when I told him that jak inhibitors were specifically mentioned he started to listen. He said he would contact my consultant. I will see if anything comes of it. I tried calling the consultants secretary but naturally it went to answerphone. Doubt very much if I will get a call back

mhos61 profile image
mhos61 in reply to MCW22

Didn’t realise you were on Jak inhibitors. Someone in your healthcare team needs to sit up and listen.Have you had any luck yet? Maybe an email to your CCG and upload the links from the MPN Voice and BCUK letters - but also with particularly emphasis on the immunosuppressive effects of Ruxolitinib treatment.

I had to resort to contacting the CCG, it worked well for me.

I printed off the Mpn voice , the blood cancer uk, the NHS ,and gov . Uk letters and have just been for my third jab and took them with me they made a note on my records of it being a third jab and were very helpful. Thank you Maz for all your help.xx

I'll try the walk in centre again next week. Not in too much of a hurry at the moment as my arm is still aching from my flu jab, I'll give it another try when that's stopped hurting

mhos61 profile image
mhos61 in reply to MCW22

Hope everything goes well at your next attempt. I know how ‘wearing’ it all can be. X

MCW22 profile image
MCW22 in reply to mhos61

I was passing the walk in centre again today so I thought I would try again as it is Sunday and different staff on door. Still wouldn't accept the info from the Internet, but at least these people knew what I was talking about but still say I need a letter from gp.

mhos61 profile image
mhos61 in reply to MCW22

Sounds like a case of everyone passing the buck to me. I’m disappointed for you that your GP isn’t more supportive.

Don’t you think it’s strange why so eager they don’t even know what going on maybe best to wait abit

MCW22 profile image
MCW22 in reply to Windy51

It was reported that all immunosuppressed people would be vaccinated by 11th October. I'm eager because I want to be protected.

I was given a booster despite the letter

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