The roll-out of the third dose of Covid vaccin... - CLL Support

CLL Support

18,610 members30,925 posts

The roll-out of the third dose of Covid vaccines to the immunocompromised has been a chaotic failure

bennevisplace profile image

From the many reports on this forum, we gathered that all has not gone to plan. This survey says 44 % of blood cancer patients were invited to have a third dose. I'm surprised it's that high.

bloodcancer.org.uk/news/jus...

40 Replies
Newdawn profile image
NewdawnAdministrator

It’s good to see that this issue is now being made more publicly visible. Well done to Blood Cancer U.K. in carrying out this poll and responding rapidly to the results. It’s clearly been a total fiasco and either not communicated properly or misunderstood by health organisations. I received a text two days ago identifying me as someone in need of this third vaccine. Unfortunately, as I presently have a bad cold and upper respiratory tract infection, I can’t have this yet. Interestingly, since the restrictions were relaxed, I’ve barely been free of bad colds and infections! 😟

Newdawn

Marchmouse profile image
Marchmouse in reply to Newdawn

I got text from NHS asking me to sign up then saying use either 119 or NHS UK. Got into 3 hour loops between two all saying not possible . call GP. Called GP reception said had a lot of similar requests and they had no idea. The GP manager would send out letter. When. What is matter with email? Tried NHS/uk website last night same loop.As far as I am concerned NHS Health or the administrative arm is hopeless, as various Government ministers have said over last 13 years: their department is not fit for purpose.

In general GPs are gatekeepers or rather letter box where things go in but nothing comes out.. A huge waste of money. Now anyone with sense has to go to A&E and wait for hours, I assume. Or maybe better and stay stress free and Watch and Hope.

My friend of same age, just 76, 20 miles from me had his 3rd booster a few days ago and he has no immuno compromisng symptoms. His GP arranged it for him. Wrong GP? Hit and miss. Nothing I know what do. Hospital specialists? Mine handed me over to GP 3 years ago. At what stage are CLL candidates sufficiently immuno compromised? All apparently.

Newdawn profile image
NewdawnAdministrator in reply to Marchmouse

Seriously frustrating Marchmouse. It really shouldn’t be like this I agree! 🙄

When I get over this cold I have this nonsense to circumnavigate.

Incidentally, have others received this text?;

‘Our NHS records show you may have a significantly weakened immune system and expert advice is that you should have a third dose of the COVID-19 vaccine to boost your protection. If you have a third dose appointment booked already please ignore this text. If you don't and haven't already, please contact your GP or hospital consultant to discuss this.’

My Consultant simply sent me a message saying I needed to have it but no indication as to logistics.

Newdawn

I had that text a few days ago. In the scheme of things about a month late!

Newdawn profile image
NewdawnAdministrator in reply to bennevisplace

I’m not going down the political route but overall I’m sensing such an attitudinal malaise descending over the whole Covid epidemic. I feel desperately sorry for medics at all levels because in the midst of this, they are screaming out, ‘Hey it’s just not over for us yet, we are drowning!’

Newdawn

Marchmouse profile image
Marchmouse in reply to Newdawn

In spite of this frustration I am not blaming medics either: just the NHS administration. Unfortunately it is the Irish joke: If you want to get there, I would start from somewhere else! Ie 30 years ago with a complete overhaul of NHS ervice or in meantime: Where do we contact to get an answer or book a jab!. Which of myriad of apps, messages, texts emails, phone numbers, etc. At my age I would like just to be emailed, or ONE website where I click Booster/book/reason for/send approval request to?/ booking calendar. Seems simple to me.

Newdawn profile image
NewdawnAdministrator in reply to Marchmouse

I’ve just received a letter advising me that I’ve been identified by my local health authority as a severely immunocompromised person who would benefit from a 3rd vaccine. It tells me I will be emailed/texted a link to book a jab! Hurray!

Let’s hope others have the same experience.

Newdawn

FeistyGirl profile image
FeistyGirl in reply to Newdawn

Haven’t had the text, letter or email. Yet for everything else during the pandemic I’ve had communications on the first possible day. Early September got a letter saying I was immuno compromised and anyone 12-15 in my household could get vaccination immediately. But silence since then regarding myself. I know we were supposed to be notified by 11th October, gave consultant appt next week so will ask then. Just so frustrating when everything else has been spot on with timing. So weary of having to self advocate where SLL and other things are concerned.

Yes it has been a fiasco but no blame should be put on our GPs or Hospital specialists. This is entirely down to Government communications both with health providers and the media.

Really sad that the Government is now seeking to transfer blame to GPs on so many issues.

Even more sadly, judging from newspaper headlines this political decision is working.

We all need to express our support for our GPs and NHS wherever and whenever we have the opportunity.

Newdawn profile image
NewdawnAdministrator in reply to Harvist

I’ve no idea where the mis-communication has originated Harvist and wouldn’t seek to pile more blame on beleaguered GP’s and specialists. However, I know from my discussions with my own GP surgery that they seemed clueless about the third vaccine despite Govt insistence that they’d all received guidance early Sept. It’s very strange that virtually all surgeries seemed unaware or unclear about this 🧐

I will say however that I believe GP’s must now start re-introducing face to face consults. I know from my own experience recently, the risks in failing to do so.

Newdawn

I wouldn't blame GPs or specialists but I agree there has been a breakdown of communication, and it seems to have been an internal NHS issue, since the key NHS directive was sent out to all quarters (or was it?) on 2nd September.

Government of course will just trot out whatever platitudes the moment requires, irrespective of their accuracy. The secretary of state for H&SC on 2nd October: twitter.com/bloodcancer_uk/...

mrsjsmith profile image
mrsjsmith in reply to Harvist

Totally agree,

I have a fabulous GP and when I asked her about the 3rd vaccine a while back she said she had no idea but would probably read about it in the Daily Mail. She also said she prefers seeing patients face to face and is going to do that.

Colette

Dawson21 profile image
Dawson21 in reply to Harvist

I got a text promptly and was put onto 119 where I got all the help needed. Worked well for me apart from the GP surgery who simply advised that they were not involved at all, so get lost basically. In my case the national system works and the local one is non-existent. Probably differs by location. It also takes us 3 weeks to even get a phone appointment with a GP, due largely to their availability being just 3 days a week. Thank goodness I have direct access to the CLL specialist.

Handley profile image
Handley in reply to Harvist

I agree with most of what everyone is saying about their frustration over the roll out of 3rd primaries and feel let down by the first announcement in early September recommending that it is given within 2 months of the 2nd jab. This means that anyone getting their 2nd jab before 1st July will be outside the 2mts time frame.However, like it or not, Gov't get their advice from scientists and doctors, and I am sure that the pressure on GP surgeries would be eased a little if so many doctors didn't just work a 3 day week. I know this will release a barrage of protest, but facts are facts.....!

Handley

I have had several serious issues that were not CLL related over the last 18 months. Each time the e-consult form has led to a phone call the same day. Where that hasn't been good enough I have been called in for a face to face with my GP.

I have no complaints and indeed not needing to go in to a surgery where other patients, potentially carrying the virus would be, has been very reassuring.

Newdawn profile image
NewdawnAdministrator in reply to Harvist

We can only reflect and comment based on our own local experience Harvist. I’m pleased to hear you’ve managed responsive service and as you note in another post, have known your GP personally and professionally for over 30 yrs. That’s got to help! 😉

Sadly, not everyone has had the same experience.

Newdawn

Harvist profile image
Harvist in reply to Newdawn

It helps but as the "Health" Minister is pressing for no more social distancing in GP waiting rooms, I feel that those of us on here will be forced into situations that are just not safe because the government wants to deflect criticism about poor covid actions onto the people who have continued to work for us.

The Guardian article made me smile in anguish. I need a gentle rant, here goes.

I received a text yesterday telling me that I am eligible for a third primary dose and that I should contact my GP or Consultant to book the jab. Since then I have inhabited a parallel universe with Alice's rabbit hole at one extreme and Kafka at the other.

My GP surgery who do not do Covid jabs, suggested that I call 119, the Covid help line. As instructed I enter the online booking process and discover two things. It is not possible to book a third primary dose online and that I am ineligible for a booster dose, which can be booked online. I chat with a 119 person who suggests that I try the walk-in vaccination centre route to get a jab. The list of local centres indicates which vaccinations are available, none of them list the third primary dose as being available.

I contacted my Consultant who is located in a different health district where Covid jabs are given by GP surgeries, but I am not registered in that location. She offers to write a strong letter setting out my eligibility and suitability for the third dose. Good, but who do I show it to? I try to access the mass-vaccination centre portal where I live, no go . All access is online and I end up at the same dead-end; cannot book a third dose and I am ineligible for a booster.

Next I try the Patient Advice Service as suggested by my local health authority. And, wait for it, I spoke with someone who understood the problem and said the magical words, " I can help you". Joy! I need the letter from my Consultant, verification my from GP and then she can contact the vaccines people to book me in, hopefully. It is Friday afternoon so nothing will happen until next week.

The roll out is simply not joined up and the booking process is impenetrable if a third primary dose is required.

Postscript.......just had a phone call from my GP surgery explaining that they have been asked to list all immunosuppressed patients so that they can be contacted to book into the local mass vac centre for the jab. My name is on the list! Hallelujah!

The weekend has started, officially. Chardonnay or beer?

Best wishes to all.

Michael

Perhaps both but not in the same glass.

Well done with your persistence. I am feeling so guilty because I got a text invitation for my 3rd primary vaccine almost immediately. In fact it was so quick I actually had to call my surgery to check it wasn’t a scam.

Colette

That's very very good for you!

Shooey profile image
Shooey in reply to Michaeljohn50

Is it me, why does everything have to be so difficult, the old saying of you know what and breweries comes to mind.My booking for the third dose has come through for 23rd Oct, the text stated that I should make sure the clinician knows it’s a third dose so the records can be correctly updated as the appointment is within the general booster program.

I had AZ for the first two and understood that we should be getting either Pfizer or Moderna for the third dose in an attempt to kick what little immune systems we have into action. I am pretty sure that my surgery is only offering AZ but despite several phone calls I haven’t been able to get clarification, so do I take AZ if that’s all that’s on offer or dig my heels in and insist on another booking elsewhere.

Shooey

bennevisplace profile image
bennevisplace in reply to Shooey

A recent US study found that J&J followed by a MRNA vaccine gave the best boost in antibody levels, albeit with caveats.

If able to keep safe in the mean time I would hold out for Pfizer. That's my personal view and it's in line with JCVI's first preference. Pfizer unavailabilty should be short lived.

Shooey profile image
Shooey in reply to bennevisplace

That was my thought, let's see what next Saturday brings!

I was informed by my surgery appointments were avaliable for me 13 September and I had my 3rd vaccination on 16 September. They were very clear this was a 3rd vaccination not a booster and as I left the nurses closing comment was see you in 6 months for your booster.So my surgery has acted very promptly to the date 3rd vaccine was authorised. So they had received something and were clear what it meant.

So some communication was sent out, difficult to believe that it may have missed out some surgeries on a mass mailing list.

44%! Sheer luxury! It's 0% here in New Zealand, unless they've been doing it secretly.

morepork profile image
morepork in reply to guzzifan

So true - it's 'being considered' apparently.

It seems very much a postcode lottery, maybe even a GP surgery lottery. I finally got my specialist nurse to send a letter to my surgery saying I was to get the third vaccine. After a week I rang the surgery to find out what was happening. Yes they had received the letter, no there was no action taken yet. ‘How long before it’s looked at? ‘ I ask. ‘How long is a peace of string’ replies the receptionist. So still waiting and going slightly crazy….

PaulaS profile image
PaulaSVolunteer

Yesterday morning I had my 3rd Covid jab (not a booster), at my GP surgery. It was clearly "the day" when all the vulnerable and immune-compromised had been invited to have their 3rd jabs. It felt very safe and well organised, with extra staff brought in for the occasion.

There was a short and well spaced queue to get in , through the back car park. After the jabs, 10 of us at a time sat in an enormous garage with open doors, waiting for our 15 minutes observation to be up. A girl was there with 10 timers in front of her. Every few minutes one would go off, and the girl would tell the relevant person they could go. :-) For that short time, there was quite a spirit of camaraderie amongst us all, as we watched for whose "time was up".

I realise that not everyone in the UK has had such a positive experience, but wanted to say that the system worked well for me. Actually my hospital haematologist had also sent me a letter saying I could take it to any vaccine centre and they'd give me the jab, but it was more convenient for me to go to my GP.

Paula

NooNoo14 profile image
NooNoo14 in reply to PaulaS

Good news re your third jab Paula.

I sometimes get confused as to what people mean when they say third jab. I was lucky enough to have mine when I joined a Trial via a local hospital and University.

I have since been called (several times) by my GP to have a ‘booster’ jab but can’t have it until 6 months after my third (11 August). I am not sure the GPs know the difference!!

Netty x

mrsjsmith profile image
mrsjsmith in reply to PaulaS

Paula that was an excellent experience, and well organised.

Colette

Given that for the vast majority of us (the CLL community) the vaccinations have produced negligible to zero anti body response it is very far from clear to me that getting a third dose will be of any benefit whatsoever. In fact I'm thinking that the risk of an adverse reaction to it far outweighs any negligible benefit. Could explain why the third dose roll out is lagging.

At the individual level I don't think anyone can measure the protective benefit of vaccination. Studies show it to produce measurable antibodies in many CLL patients, but in only a minority who are being treated with a BTKi. That's you I guess? Neutralising antibodies are not required for vaccine to invoke a cellular response, and that hasn't yet been studied enough in CLL.

IMO the potential benefit heavily outweighs the risk for all but a few CLL patients.

It was the task of the JCVI to do the risk-benefit-cost analysis, and their recommendations were very specific, as was the NHS directive of 2 September. I can see no cause of Third Dose ignorance and chaos beyond simple miscommunication within the NHS.

Lest anyone should think this post is aimed at front line medical staff, it's not. In the face of rising demand there are approx 1800 fewer GPs than 6 years ago. In June there were 39,000 nursing vacancies in the NHS.

I believe that a communication breakdown upstream in the NHS was responsible for the Third Dose chaos.

Senior NHS managers/ administrators must have become aware of the gaffe weeks ago and, rather than draw attention to it, have decided to let the third dose programme disappear into the long grass of the much larger booster programme.

All IMHO. Peers, feel free to review.

The dissemination of information about the need for a 3rd primary dose does indeed seem to have been poorly handled. My wife and I are both in the category for different reasons, so have seen it from the perspective of different hospital departments. From what we can see the information after the JCVI recommendations went out very quickly from the NHS - one day after on 2 Sept.

Alerted by this excellent forum my wife and I started a dialogue with GP surgery/and specialist hospital departments. It has basically taken 6 weeks to get to the point of being able to book the 3rd doses. From our perspective the blame should not be pointed at ‘the Government’ but those Chief Executives of Trusts and Clinical Commissioning Groups who didn't seem to have a reliable internal dissemination process.

Now that texts are coming through to immune suppressed patients from the NHS centrally and GPs surgeries it seems to be all systems go and everyone seems to know about it. I got my 3rd dose within 48 hours of the text arriving and the vaccination clinic knew all about correctly recording it.

So I am therefore somewhat sceptical about the efficiency of Hospital Trusts and the Clinical Commissioning groups - though making them work efficiently does ultimately rest with Government. It has to be remembered that GP surgeries have been private businesses since 1948 and their internal organisation is not something the Government can easily control.

I was called by my Bakewell surgery on Friday 14th October and told I was to have my third jab. They booked me in for the following day at the Cottage Hospital and told me to ensure that my injection was recorded as the '3rd primary vaccine'. This was to be the Pfizer whereas I had the Astra-zenica for the first two. I was told I might have a booster in February but that this might be reviewed in the light of experience. Very sore arm today (Sunday) but otherwise fine.

I live in East Sussex, I dont know anyone who has had a third dose let alone the immunocompromised. My consultant said call gp or 119. 119 said they couldn't consider me unless 6 months and 1 week after last jab, I had one week to go. Yesterday I had visitors from other parts of the country who had there jabs. I believe the government had said gps were to get in touch with those like us by October 10th, I cant find the letter that I read it in. This is a postcode lottery. How to publicise it what do I do?A rather cross and frustrated

Mal

mrsjsmith profile image
mrsjsmith in reply to Mal42

Check the CLL society website and newsletters. My understanding, and that of the Head of cancer services in my hospital it is down to the consultants to inform GP’s of any CEV patients they see.Good luck

Colette

bennevisplace profile image
bennevisplace in reply to Mal42

I can only suggest emailing your concern to your GP practice manager and your consultant, including this link england.nhs.uk/coronavirus/... The letter clearly instructs the two of them to identify and contact patients who should have the third primary dose. For me, a written "complaint" like that got an instant response.

Mal42 profile image
Mal42 in reply to bennevisplace

Thank you, as my haem nurse has already passed the buck and 119 have denied me I have forwarded to my gp, here's hoping. It seems we have a postcade lottery in place at the moment.

Mal

bennevisplace profile image
bennevisplace in reply to Mal42

🤞

You may also like...