Hello everyone! I hope you are all doing well in tricky times. I am new and a carer for my Mum who was diagnosed with myeloma earlier this year. We have found Blood Cancer UK and all their work to raise awareness of the issues faced by those who are extremely clinically vulnerable during the pandemic. This is my first time posting, so hope I am not replicating a thread elsewhere.
My Mum finally got her invitation for her ‘booster’, a few days later she received a letter from the NHS that clearly marked out that what she required was a third dose as opposed to a booster (on the same day I read the stuff that Blood Cancer UK had put out also making the distinction), and to also speak with her consultant. She went for her vaccination appointment at her GPs surgery on Saturday and before anything else happened my stepdad was very clear and showed the nurse the letter. She had never heard anything about a third dose being different from a booster. She asked if she could scan the letter as none of them in the practice had heard anything about this. My Mum was reassured that she was not receiving a ‘half dose’ and got her Pfizer jab. However, it wasn’t until she got home that she noticed that her card that the nurse had marked up said ‘booster’.
I am concerned that if this has been recorded on their system as a booster, as opposed to a third dose, that she will not be invited or be eligible for a booster in the weeks/months to come. I am thinking of getting in contact with my Mum’s GP surgery, as I am sure she will not be the only one this applies to and my Mum was concerned that the nurse didn’t read the letter in detail. I want to ensure that this has been recorded correctly on her files.
Has anyone else faced similar? Any thoughts on getting in touch with the surgery (I am going to email as I don’t want to clog up already very busy phone lines)?
The experience your mum had is replicated around the country, based on lots of the threads here since I started doing my own research mid-September! I’ve written to my MP about it, but don’t expect that to do much good . . .
The NHS reporting system has not been updated to enable practitioners to record a ‘third dose’, so they have to put it in as a ‘booster’. In many places, there’s a ‘note’ then put on the patient’s record to state it’s a ‘third dose’.
This is exactly what happened to me: the nurse did the jab, recorded it ‘officially’ as a booster, then put a note on the digital record that it’s ‘third dose’. She also wrote that on my record card and it’s in my personal GP records . . .
In summary, the ‘third dose’ has been a complete shambles - many GP practices and hospital departments were unaware of the programme, which is separate to the ‘booster’ programme which is also not going that well!!
So glad your Mum has had her ‘third dose’. Suggest you keep all the paperwork and follow this forum as I’m sure we’ll all have to start campaigning again in a few months time if the JCVI decide that we need a ‘booster’ six months after the ‘third dose’.
As an aside, this is the usual way vaccine programmes work - sorting through old passports yesterday I found my little card you used to carry showing vaccines, dating back to the 1980s! Sure enough some vaccines had a ‘third dose’ and several listed a ‘booster’.
None of this is new to people who know how to run vaccination programmes - but the Government didn’t trust those people (GPs) with the contracts for Covid19.
Once again, a big thankyou to Blood Cancer UK for all the work you’re doing for us and keeping us ‘connected’ via this forum.
Thank you so, so much for your reply. Yes, I agree the roll out and messaging around the third dose has been abysmal. And good to be aware that the system that it is recorded on does not give flexibility to record as third dose and has to go into notes instead. I think in that case I will get in touch with the GP surgery and ask that it is definitely recorded in her notes. Hopefully then she won’t have any issues if there is a scheme to give booster in six months as you say.
Hi @s.mulrine I am so glad that you have found us, yes, Blood Cancer UK has done sterling work campaigning for us in so many ways.
You and your Mum have done everything you can and so many people seem to share your experiences.
Personally I am just waiting to see if this matter resolves itself over the next couple of months. Personally I think that the GP surgeries are doing their best in very difficult circumstances.
I just wanted to say that I think being a carer is being the unsung hero. Such a hard job with all the same thoughts, emotions and practicalities as the patient plus you keep all the plates spinning.
The Blood Cancer UK support line, details above, is there for both of you and we are there to support you both two.
I look forward to hearing more about you, look after yourselves.
I have already posted on Facebook and Blood Cancer UK has kindly offered to help me.
After many weeks, I still have no recognition that a Third Primary Vaccine is due to me.
My GP surgery says that it has had no instructions from the consultants and will not proceed without them. The hospital is even worse saying that consultants do not time the time to speak to individual patients in respect of COVID vaccines. Nothing moves forward.
NHS England rejected my Freedom of Information Request because it should have been addressed to University Hospitals Birmingham. So I have started again.
Here is my request.
Dear Sirs
A letter was written by NHS England of Skipton House 80 London Road London SE1 6LH on 2 September 2021 addressed to GPs and Chairs of NHS trusts and foundation trusts amongst others entitled Updated JCVI guidance for vaccinating immunosuppressed individuals with a third primary dose. On page 2 the following is stated:
“We are asking all consultants to identify patients within their care who are in the JCVI’s definition as being eligible for a third primary dose and to consider the optimal timing for administering a third dose, based on the JCVI’s advice. The full list of eligible individuals is listed in Annex A and a template letter to issue to eligible patients is in Annex B.”
Within this in mind and recognising that the communication appears to have failed in some circumstances leaving many immunosuppressed patients without a third primary dose, please answer the following questions:
[1] Have University Hospitals Birmingham (UHB) consultants completed the exercise “We are asking all consultants to identify patients within their care who are in the JCVI’s definition as being eligible for a third primary dose and to consider the optimal timing for administering a third dose, based on the JCVI’s advice? The full list of eligible individuals is listed in Annex A and a template letter to issue to eligible patients is in Annex B.”
[2] Has a letter been prepared in connection with [1] above by USB consultants?
[3] What was the date of any such USB letter?
[4] Has the letter been communicated either directly or indirectly to GP Practices?
[5] What percentage of patients roughly with the blood cancer Chronic Myeloid Leukaemia (CML) treated by Tyrosine Kinase Inhibitors (TKIs) have been identified as patients requiring the third primary dose?
Hi @Nimbargent a great big welcome to our forum and you have obviously joined all the posts on this issue and confusion.
As you will realise Blood Cancer UK has been campaigning and lobbying so much on our behalf on this as well.
The Blood Cancer UK support line details are above if you would like to speak to them and we are supporting each other, some of us have been lucky enough to have our 3rd vaccines or boosters and have shared handy hints, but it also appears to be a postcode lottery, and others of us have not succeeded yet.
However now that you have found us please keep posting as I look forward to hearing more about you.
Look after yourself
Thank you for your lovely posting. Yes, it may be a postcode lottery but I fear that it may be disobedience within parts of the NHS where certain units are just not responding to the 2 September instruction.
@s.mulrine a warm welcome to you as well, I hope you and your mum are doing okay. In our conversations with the NHS we’ve been assured that people who should have been invited for a third primary dose, but who instead had a booster jab, should not experience issues getting a further booster jab in six months time, if this is recommended by the JCVI. We’ll keep monitoring this issue and keep the blood cancer community updated.
Hi there, I went for my third jab & the nurses I saw going in seemed to be familiar with the 3rd jab but the person who gave me my jab said" oh, this is tha 3rd jab & booster, they’re the same". Anyway when I went for my flu jab I asked the nurse what had been put on my record & it the booster. I explained about it should have be recorded as a 3rd jab & she changed it but wasn’t sure it was correct & said to contact my surgery & ask them to change my record. However they advised me to contact the vaccination team & see what they had to say & it had been changed to a 3rd jab & she was most apologetic that she couldn’t give me an appt for the booster but recorded me to make sure I would be called for the booster in 8 weeks time. So maybe if you can contact your vaccination team they will sort it out for you. Mine was extremely helpful,I said to my husband maybe they’re not used to people clamouring for their jabs!!!
I had exactly the same experience but my GP practice assured me that I would be invited for a booster 6 months after the 3rd dose. I’m not sure I believe them but I’ve already had 2 phonecalls with them about it.
Hi, there is a great deal of confusion about this and I have been shouting about it. One thing you can do is go back to the GP and make sure it’s changed on her system as a third dose or is flagged as that so that she can then get a booster in 6 months. Some GP surgeries have not been properly informed about the difference between the two. As I understand it, it’s not a different dose at all so it’s the same strength but an earlier top up which can be taken as early as 8 weeks after your 2nd dose. So before the 6 month time period which is when you get a booster. That’s
why it’s a third dose. Can be taken earlier to reinforce the other two vaccines before you get a booster 6 months later. Not sure if you can DM me but happy to talk. I have Multiple Myeloma diagnosed August had third dose last week.
My third dose was recorded as such and not as a booster and this was explained to me by the medic that administered it. You are right to communicate your concerns to your GP. Best wishes
I got my third dose 4 weeks ago after a message from NHS to go topical surgery. I mentioned to the person who gave me it that Jr was a third dose not a booster bur she was clueless. Still no record of it on my NHS app so I have no idea what it has been recorded as. We are going to the Carribean on a 40 night cruise in February. I would like to have a booster before we go but the 6 months won’t be up so I doubt i will get it. I paid for private tests after my first 2 jabs which showed I had no antibodies. I am undecided whether to have another or just assume i now have some immunity and hope for the best.
I’ve recorded elsewhere my tail chasing round NHS Scotland over this. So when the time came for flu jag and the offered COVID jag, went along to the centre armed with righteous indignation and every relevant bit of paper I could find. Said to the receptionist that I thought it should be noted as 3rd vaccination, she agreed, the nurse doing it agreed, and recorded it as such, reminded me to check I get a booster in six months and it all seemed to have been a complete worry about nothing.
Then attended a Zoom meeting on this, and it seems that I was just completely lucky, and others in Scotland still haven’t got it sorted.
Booze-ups, breweries and other similes come to mind.
Hi all, just wanted to let you know what we know so far about this! When the booster doses and third doses started being rolled out in September, there wasn’t a way to record a third dose as as ‘a third dose’, so people who had their third dose, had it recorded as a booster.
Fortunately this has now been rectified. Every dose is still recorded as a booster dose. However, NHS England now have a mechanism in place where an individual’s vaccine record is then cross-referenced with the NHS’ information of the individual’s health condition, and automatically changed to ‘third dose’ for anyone eligible.
We’ve been assured that people who should have been invited for a third primary dose, but who instead had it recorded booster jab, should not experience issues around eligibility for a further booster jab in six months time, if this is later advised by the JCVI – “It is expected that severely immunosuppressed individuals will become eligible for a booster dose as part of a routine booster programme from around 6 months after their third primary dose, pending further advice” -Joint Committee on Vaccination and Immunisation (JCVI
We will continue to monitor how this works and will keep the blood cancer community updated.