Over 100,000 of the most vulnerable people hav... - CLL Support

CLL Support

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Over 100,000 of the most vulnerable people have not had third jab

Harvist profile image

Do they mean us? This article in the Guardian sets out many of the obstacles we have all chronicled. theguardian.com/world/2021/...

"Blood Cancer UK said its own support line had repeatedly been contacted over the last two months by patients who have struggled to access their third dose, despite the Joint Committee on Vaccination and Immunisation (JCVI) listing immunocompromised adults as the top vaccine priority. The NHS and the government has set a deadline of 11 October for all immunosuppressed people to be invited for the jab.

“At a time when the infection rate is high, many thousands of vulnerable people do not yet have the protection they need,” said Gemma Peters, the charity’s chief executive. “The failure of the roll-out of the third dose has caused huge anxiety for immunocompromised people with blood cancer, and is likely to have led to some people becoming seriously ill or even dying. We hope the government and the NHS will now act with real urgency in making sure every immunocompromised person is invited for a third dose in the days to come.

“We are also expecting an announcement shortly from the JCVI about a fourth vaccine dose for the immunocompromised. It is vital the government and the NHS learn lessons from what has gone wrong in the last couple of months so that they do not repeat the mistakes next time.”

32 Replies

I hope the health minister (secretary, or whatever they call them now) will read this, but I doubt it.Cx

Well I got my booster (w+w, untreated) following the call from my GP. That was 1/11/21. Its semantics to me whether it's been a booster or a 3rd shot. A lot more disarray in the system lately. I guess a new vaccine will be developed, perhaps against omni. Think everyone in the UK could be getting a further jab of something by the spring.

I am curious as to how they know that because my GP said the coding for the 3rd vaccine and booster are the same and she hopes someone will have sorted it out in the next six months.

Colette

AussieNeil profile image
AussieNeilAdministrator in reply to mrsjsmith

It should be possible to write a query to check how many COVID-19 vaccinations a patient has had and hence determine who is yet to have their third shot.

mrsjsmith profile image
mrsjsmith in reply to AussieNeil

Neil,I am not sure who to query it with though and a number of patients here have been called for booster vaccine and are either getting it written on the card or on their notes. My text called me for 3rd vaccine but when I asked my GP to double check on her system she said they were all coded the same. The government are only giving out figures for booster vaccines as far as I am aware.The article is behind a paywall so I was only able to read the beginning.

Colette

AussieNeil profile image
AussieNeilAdministrator in reply to mrsjsmith

Colette, I'm referring to how the 100,000 figure was derived. I'm assuming the NHS has patient records (as Australia and many other countries do) of item numbers (coding) for, in this example, vaccinations. It should then be relatively simple to write a query to find who is immunocompromised and how many COVID-19 vaccines they have had, then send a text to those who have only had two shots, inviting them to make an appointment for their third. If manual/hand written systems are significantly involved, then indeed, how the 100,000 figure was arrived at is uncertain.

Countries are all over the place with the adaption and retirement of technology in medicine. The NHS implemented a process to retire fax machines way ahead of Australia, and Australia's implementation of personal electronic health records is an embarrassment, but at last I can access my blood tests on line now that I'm having them every 3 months, rather than every 2 to 3 days when I really wanted to know :) .

Neil

mrsjsmith profile image
mrsjsmith in reply to AussieNeil

To be honest Neil I have no idea how that figure was arrived at. I have found the article online and it says the NHS have written to cancer specialists saying 25% of vulnerable patients have not yet had the 3rd vaccine, but I wonder if my specialist would be able to check if I had mine. Days after I had mine via surgery federation I was getting messages from another hospital, the NHS and my surgery offering me the booster. Not sure how effective our records are.Colette

there's a computer hitch still...as there isn't an option to put in a third jab at the moment just a note on your record ..I think it is up to the consultant to order a 4th jab later on at the moment

AnneHill profile image
AnneHill in reply to AussieNeil

The implementation of the 3rd vaccine/booster has been really disorganised. I go to a modern surgery and they are normally efficient. They didnt want phone enquirys. I had a blood test and asked the receptionist about the confusion between types of vaccine and she said they were the same. My consultant wrote and when I arrived to get my vaccination there were people queuing inside and out. I had been included with the over 80's. Nobody could understand why so many were there. I was furious because there wasnt social distancing and I cant stand for 20 minutes. I went to the ladies and stayed indoors.

They only have a few times giving jabs. They hadnt got the stock and days went by and they werent doing any.. My Husband wasnt called for his booster and drove to a drive in for his. A couple we know hadnt been contacted either.

The Government are saying people arent jabbed because they arent able to get them before 6 mths and 1 week after their 2nd vaccination. They can say all this but if the vaccination centres arent doing many days and not giving appointments it explains a lot.

My son cant have his until January. Maybe that figure is all the people who havent had a booster. They cant until 6 months. Anne uk

I agree with your comments Neil. However I would emphasise the 'should' in it should be possible. Sadly these things that we know to be possible have sometimes not been thought about or the data has not been collected or captured.

Blood results, interesting. I too can access my test results at my GP's website. I looked back to just before my diagnosis in 2012. Made interesting reading. One issue I have is that the online app presents the data in a poor way for the end user to read, needing to look at several pages for each set of test results. I hope the medical staff get it in a more usable format. I'm pretty sure that not all my hospital test results are there, but not important to me as I get them direct.

Best to all, stay safe, rob

here in Somerset the flow of info goes one way only ie gp to hospital not hospital to gp and although the gp records are available to us only the gp has access through a convoluted system of passwords ..to hospital records ...a pot mess if you ask me !

Lilsa profile image
Lilsa in reply to AussieNeil

Gosh Neil, how do you access your blood tests on line? I would love to be able to do that!

AussieNeil profile image
AussieNeilAdministrator in reply to Lilsa

Lilsa, it might depend on your pathology lab. Mine are available via myhealthrecord.gov.au/

Neil

Lilsa profile image
Lilsa in reply to AussieNeil

Thanks Neil, unfortunately neither of the pathologists I visit seem to use the myGov health record. I wish it was automatically recorded, should not be too hard using our Medicare number.

I signed up for the health record back in 2013, but since then there has been precious little recorded there…… just my COVID vaccines and some other vaccinations.

Perhaps I need to have a talk to my GP about it.

Lilsa

Biker7 profile image
Biker7 in reply to AussieNeil

Hi Neil,

How long after each blood test do your results usually appear on your health record?

AussieNeil profile image
AussieNeilAdministrator in reply to Biker7

I don't know yet. I'm due for my next 3 monthly test soon, so can find out then.

Biker7 profile image
Biker7 in reply to AussieNeil

Thanks. Re the 3rd booster. The Australian recommendation for this booster is 8 weeks after second shot for immuno-compromised. Apparently it can even be given after 4 weeks in special circumstances. Do you know of any studies that suggest early timing is preferable?

access to blood test results is not easy in the uk ...I asked when I was having obinutumazab iv and was told no I couldnt look as it was a 'data protection issue' only to discover the following day that the health authority had sold all hospital patient data to a private firm without as much as a by your leave ! so called anonymised but including age and postal code ...there is no one else over 70 in my postal code area ...grrrr

I took the booster that was offered by the gp then got 2x invites for a third jab from the health authority in Somerset uk so goodness knows what its recorded as but that was in September so probably as a booster ..I have a copy of the government edict sent out at the end of August to medics which i fully intend to wave about with gusto after christmas to get a further jab :)

As I understand the booster for CEV is still a suggestion. I can’t remember the exact words Helen Parry used, but yes I expect more problems come the spring.

Colette

thats why Im keeping the paper work ..but my gp did acknowledge that I would need another jab after the effect of Obinutumazab have worn off in March so we shall see

Has anyone seen studies showing the ideal timing of the booster? Here in NZ we are told 8 weeks but I cant find the study why?

morepork profile image
morepork in reply to dj02

Hi dj02, After I had my 3rd primary vaccination here in Wellington NZ (clearly called the 3rd primary shot, not confused with the 'booster' debate in the UK) I was told to wait 6 months to qualify for the booster. Am I right to guess you have also had the 3rd shot, and next step is the booster which is being rolled out across this country very soon? I'd be happy to get a booster earlier than 6 months but my NHI record will probably not allow this, when checked. We will see.

Regards

Stephanie

RosettaClapp profile image
RosettaClapp in reply to dj02

its supposedly 4 months in uk for immunocompromised but that doesn't' fit' with the computer system and on the ground the staff are convinced its 6 month gap ..full stop..

Read this in Sunday paper.

Black and white picture.
mrsjsmith profile image
mrsjsmith in reply to Mtk1

Ha when I asked my GP about the 3rd vaccine she said the surgery had been given no information, but no doubt she would read what she should be doing in the Daily Mail 🤫

Colette

Mtk1 profile image
Mtk1 in reply to mrsjsmith

Unbelievable that some gp’s still not up to date.😤😩

mrsjsmith profile image
mrsjsmith in reply to Mtk1

In fairness this was some time ago before I had my third vaccine, and my GP federation was so quick I actually called the surgery to check it wasn’t a scam text. They were so quick they used Eventbrite for the booking because they were unable to use the NHS booking system, so I wouldn’t be surprised if those patients were incorrectly coded 🤔

Colette

As far as the nhs data base for vaccination there is no coding for a third vaccine only a booster it is due to be updated after Christmas . the only thing they can do is put a note on your record to say its a third of 1st cycle sadly

This is what I thought so I was confused by the report from the charity Blood Cancer saying 25% of CEV hadn’t had their 3rd vaccine and I wondered how they arrived at that number.

Colette

Annie1920 profile image
Annie1920 in reply to mrsjsmith

Think the recipients must have reported that they had had their 3rd jab

It's all a bit of a mess, isn't it?

I never got a call for a booster early... eventually, got a letter with a place and time - but no date - so turned up, only to be told I was a week early (they did apologise for the mess-up, which affected quite a few people). So - it was a week short of six months (or whatever), and I pointed out my CLL status (I had documents to prove it) - made no difference to them - come back in a week.

Now I have had the third dose, but despite writing a while back to ask the GPs to list it as such - not a booster - I have had no reply. In the same letter I asked for a Shingrix shot, and have a date for that, so will ask then about a booster.

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