Never heard of Booster 4!

[anapurna]

Just phoned the haematology department at King’s College Hospital where I have been a CLL patient since 2017. Unbelievably the person I spoke to had never heard of a fourth booster jab and kept asking me when I’d last seen the haematologist (August)as no such thing was in my notes! She said that no-one has requested what I was asking for! I said my GP won’t book me for my 4th booster unless I have a letter from the haematologist. I had to advise the person to look on NHS online to discover that vaccination 3 has been reclassified as such and booster 4 is available to people with blood cancer amongst other immunosuppressed people. Still not sure if they will provide such a letter. Aaaaargh!!!

[devonrr]

Usual lack of joined up writing!!

[mrsjsmith]

Sorry to hear that and I believe the only CLL CNS is on holiday. I am also a patient at Kings, and let me politely say the service is mixed. They are not on the CMDU London list, but St Thomas and St George’s are, but hopefully we will never need that.

I had no trouble booking with my surgery. I was calling about a different issue on Thursday and when I asked about vaccination I was booked for this morning. The CLL Support newsletter, issue 14 has a letter and it’s called Official Publication approval reference:C1468 so please speak to GP or Practice Manager and quote the first page that gives all the updated information.

Good luck

Colette

[Sprietgemeente in reply to mrsjsmith]

This is brilliant information thank you. After hours on the phone to haematology and the GP receptionists I contacted the practice manager and he sent me a text to get my 4th jab. Finally got somewhere thanks to you !

[Sprietgemeente in reply to Sprietgemeente]

I think it was the Official Publication Approval reference that worked the magic. Thanks again.

[WLondoner in reply to mrsjsmith]

I was just advised by my GP practice that there wasn’t a fourth jab!

I have just emailed them the reference you mentioned. Fingers crossed!

Thank you so much.

[mrsjsmith in reply to WLondoner]

Good you are welcome I just read too much and my head is full of information.

In your GP’s defence a friend whose daughter has recently become a GP tells me they are allocated 5 minutes a day to read letters. We obviously think ours is very important but I wonder how many in a day they get. I am lucky to have found a GP in my practice that I always try to see because she reads all my previous hospital letters before speaking to me and I don’t have to spell Ibrutinib or ask her to check for contra indications for new prescriptions.

Good luck

Colette

[WLondoner in reply to mrsjsmith]

Yes, they under a lot of pressure. I do feel sorry for them.

However, finding a GP who understands your diagnosis is a god send.

Thank you so much for your post. Just received an email reply from practice. A doctor will get back to me today.

[mrsjsmith in reply to WLondoner]

That’s good.

In desperation I said one day ‘ I am not a hypochondriac, nor am I stupid so if I come in and say there is a problem please don’t say it will go away ‘ I have no idea what was written on my notes but I am taken seriously now 🤞

[WLondoner in reply to mrsjsmith]

Hi

Just received this text from my practice.

“Thank you for your email. As far as I am aware there is no roll out for 4th booster vaccine.”

Am I going crazy?

[mrsjsmith in reply to WLondoner]

No they are 🙄🙄🙄

1. Reply and politely suggest they find and read the letter I quoted earlier.

2. Ask your CNS/ Consultant to write to your GP.

I am so sorry you are having such problems, and this makes me appreciate my surgery all the more. I am glad I gave them a 5 ⭐️ rating for my 4th vaccine experience.

Good luck

Colette

[WLondoner in reply to mrsjsmith]

Hey

Just to let you know, that after my practice told me there wasn’t a fourth jab. I managed to get my consultant to email me confirming that there is definitely a fourth vaccination and I should have it immediately.

I forwarded the email to the clinic yesterday and they have finally confirmed that fourth vaccinations do exist and I can get it on Saturday.

You are amazing! Thank you so much.

That JCVI notice did the trick.

Regards

WL

[mrsjsmith in reply to WLondoner]

Pleased I could help, and thank you for letting me know you were successful.

Colette

[Suzie42]

My gp did mine withiut consuktants letter, used common sense

[nanasu]

I`ve had 3 letters so far about getting my booster......I believe though we have to wait 3 months? anyone heard different?

[mrsjsmith in reply to nanasu]

Latest letter says minimum of three months between third primary and booster dose.

[annmcgowan]

Hi I have just received my appointment for booster. The manager at my GP practice contacted the vaccination centre who called me to organise this today. I didn’t need a letter from my haemotologist. There are government guidelines for Practice managers and Vaccine centres to follow. Have you tried your practice manager?Ann

[RosettaClapp in reply to annmcgowan]

I tried mine and they just passed it on to my gp who reluctantly said he had had to dictate a letter ..he didnt say to whom (!) but he did say that the nhs data base still doesnt have the facility to register 3rd primary doses and that I had been categorised as 'fully vaccinated ' .....

[annmcgowan in reply to RosettaClapp]

The NHS didn’t have capacity when I had my 3rd vax. They put a note on the vax records. It was the vax centre that contacted me. Maybe he is writing to them.Can your haematologist advise?

I hope you get this sorted out.

Good luck

Ann

[Annie1920 in reply to annmcgowan]

The nurse told me she had put a note on my record when I had my 3rd jab but when I rang 119 to make Appt for booster they looked up my record and it said I was fully vaccinated.. So I'm stymied..

[annmcgowan in reply to Annie1920]

Hi I would follow this through with my haematologist and my GP surgery as you are entitled to it and you need it. I find my GP practice manager at my surgery helpful re vaccinations. Can you take this up with them?Good luck

Ann

[Walkingtall62]

When I had my third jab at my GP’s surgery, the booster was discussed with me. The terminology is something to get through, but I see it as others without CLL get a ‘booster’. Those with CLL and other blood cancers get a third jab, and then a booster. Yay yay for my GP’s

[Emerfly in reply to Walkingtall62]

I was told the same by consultant . Did your GP say how soon after additional shot you should have booster ? (4th shot)

[RosettaClapp in reply to Emerfly]

the JVC advice is minimum 3 months between 3rd dose and booster

[Walkingtall62]

I think three months. I have also had a letter from the hospital. I know it is next year. Not able to find letter at moment

[Harvist]

I had a phone call from a very nice lady who offered me the first available appointment for my booster after the Jan 7th due date. First time in this debacle that I felt my records were right and the system had worked. However still no-one in my immediate medical circle who has any idea about when or where the local CMDU will be. So I suppose the system is still a bit leaky. Sajid Javid is always happy to celebrate his aspirations but they take a long time for the people actually doing the work to know about them.

[Fowey2009]

(UK) There is a real disconnect on the communications on this - some consultants think it is happening in primary care and primary care think hospital consultants are arranging it. It's not really surprising given the constantly changing nature of information from the DHSC.

I am afraid our practice manager is a bit 'jobsworth' (even without the current pressures) so we got nowhere with her. Now asking the consultant for a letter to the GP.

Beryl

[peghip]

I don't see why GP requires a letter from your consultant. It is in your records you have a blood cancer and advice to GPs is three doses and a booster for immunosupressed includes blood cancer. Sever others on here have made it clear their GPs understand what is required, mine does and was quick whe the JVCI introduced the guidance. Just be certain it is 91 days since your 3rd dose. My booster was day early and records clearly stated 91 days hadn't expired. GP overroad system. There is enough fir us to worry about to stay safe and try to get bear a normal life without challenges from our doctor.

[RosettaClapp in reply to peghip]

mine never seems to be up to date with government edicts, sadly I have to send on the relevant paper work and he is still reluctant to act swiftly. He is still under the impression that CLL is a minor cancer

[Fowey2009 in reply to peghip]

Some GP surgeries aren’t as organised as others. Regrettably ours has recently been classified as ‘inadequate’ by CQC which reflects our experience.

[FairweatherSailor]

Amazing how this varies. I got a letter from Royal Marsden early September outlining that I needed a 3rd as part of the primary course and a booster after that. But to be honest our GP surgery are already on the case. I just called their vaccine line and they asked if this would be either my 3rd primary or Booster(4th) , without me even asking. Should be getting the booster (4th) end of next week. I do think that some GP surgeries are slow in getting their act together.

[DanBro1]

My oncologist at MD Anderson (The #1 cancer hospital in the world) told me that when I soon finish my Venclexta regimen that I should consider getting a fourth Covid shot. I also spoke with an Infectious Disease doctor last weekend, who recommended that I get a fourth Covid shot 30 days after I finish my Venclexta regimen. My Covid booster was in August - I am a bit nervous because my LLS lab results after each Covid shot came back "No detectable antibodies...." .

[Emerfly]

3rd was referred to as an ‘additional shot ‘ by my consultant not a booster . We are still eligible for boosters & from what I’m reading we are eligible for booster 3 months after additional .

[Caringagain42]

My dad is supposed to get his 4th booster (?) in February. I saw it in his chart the nurse left up on screen accidentally. I guess at some point we’ll be wearing badges with our numbers on them.