Could I get some thoughts on this please . I’ve been asking about second pneumonia jab for a while , got an appointment at the doctors who then decided they would check with my haematologist, I’ve only ever seen her once ,she has advised my gp I don’t need it as I have good immunity. If this is the case why have a shut myself away for the last 18 months !! I’m in the UK
My gp never gives me my blood results but last time I asked the receptionist she advised White cell count 20.7 & ALC 18 so I do have low figures
Thanks Elaine xx
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Elaine7061
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Hi Elaine, You sadly do have some company convincing your doctor that you would benefit from a second pneumonia vaccine, though it's unusual for a haematologist to say no. Frankly, now is a good time because you currently have a good immunity!
Adults and children who are severely immunocompromised (including anyone with leukaemia, multiple myeloma, genetic disorders affecting the immune system, or after a bone marrow transplant) usually have a single dose of PCV followed by PPV.
Sadly this is a common problem in the UK. Between first and second treatment when bloods were all good my Haematologist said I didn’t need the second vaccine and the practice nurse also refused. I eventually found a receptive GP and managed to get it last year. I always forget the names but just quote the Green Book.
I didn’t need to change I am lucky to be in a large practice and I eventually found the GP I liked. She always reads letters and notes before seeing/speaking to me so she is up to date.
If you do decide to change ask neighbours ( as much as we can ) for recommendations.
Make sure you change. Incompetence should not be accepted. Also, tell the receptionist politely that you'd appreciate having a copy of your blood test results... always. You are supposed to get this if requested. Likewise copies of scans, ex-rays etc. The blood test and other reports are free to you and the other investigations you'll get on CD .. and only pay a small fee if under 60. If over 60 ALL records are free. Best wishes to you.
I was told by the nurses in the chemo centre that I could not see my blood results or have a copy as they had to respect 'data protection' I did insist and they did show them to me with bad grace but no copy ..Later that week I found that the Trust had made a deal to sell off all patients data all be it marginally anonymised !! I was incandescent with rage
Your clinic nurses are wrong. They are ignorant and enjoy being in control. I've had to deal this type of rubbish. If you have to continue to deal with them for now, try to keep calm and cool. I can't suggest how you make them act reasonably, that's my honest reaction.
This seems a common problem. I’m up against a bossy nurse who knows better and an uninterested gp. It’s exhausting. I didn’t get the second pneumonia jab.
thats worth knowing ..my gp really thinks CLL is just a part of aging I think...he originally advised that I didnt need to shield as shielding was for serious cancer like breast or bowel ..luckily haematology team are on the ball ..
You have every right to see your blood numbers (from both haematologist and GP) and I am very surprised they are not forthcoming - the main principle SHOULD be a well-informed patient is a good patient. I totally agree with others, see a different doc in the practice or move practices.
Even if your numbers are good, you should still ask for them, so you can track progress over time., spot trends (that a doc might miss) and ask good questions.
Without checking titers to pneumonia how does the doctor know about your immunity? There is a new pneumonia vax on the way. I'm in the US...a day or so after any labs I see them all on my internet patient portal...that's the case with most all my docs.
I'm happy for you. Unfortunately in the UK this is not always a patients experience using the NHS. We sometimes have to fight an entrenched attitude from some, not all by any means medical and administrative staff, that patients should be grateful to be treated medically and should not need explanations. This attitude is changing, but seems entrenched in some places.
Hopefully it will change if patients make some noise. It's frustrating. Here the patient is viewed more as a consumer and there is competition so the providers are perhaps more attentive to patient demand. The govt is not really involved until age 65. There are pros and cons to all systems. Good luck.
I’m in NZ so this might not be relevant but I was offered Pneumovax in 2016 and now, 5 years later, I’m having boosters. In both cases, my hospital haematologist made the recommendation although the shots were administered at my GP’s practice.
I’m being given 2 shots this time. I had the Pneumococcal 13 conjugate vaccine back in June and I’m having Pneumovax next month. I’ve had pneumonia twice — October 2019 and May 2020 — both mild and didn’t require a hospital stay. I think these vaccinations are very important and I was pleased to get them.
This year I’ve also had a flu shot, a Tetanus booster and the first Pfizer dose (second one due on 19 August) so I’m doing my bit to be prepared!
Hi Elaine,I was told the same.Diagnoised with CLL in 2018 had pneumonia jab. The consultant in writing wanted me to have booster but I was refused as the recommendation it seems from the Green book which I quoted that it is every 5 years the particular pneumonia booster I need.
The consultant requested me to have shingles vaccine but I can only have that when 60. Now 61 ready to request this from my GP.
It seems so many GP'S seem unaware unless we ask of the additional protection we need that other vaccines offer .
Unless the rules have changed you should only be offered the Shingles vaccine from age 70 and because the one offered by the NHS is a live vaccine you shouldn’t have anyway. Shingrix is only available privately.
Two years after first treatment I had low dose diphtheria, tetanus , inactivated polio, hepatitis A and a year later meningitis. This was back in 2009 and I am not sure if any of those are still relevant but I am sure someone here can tell you of the most recent advice. Paula’s posts on the side probably have up to date information.
Thanks I will take a look at that. It is a shame that it is so confusing.It would be so much easier for us with CLL to be given the right information about vaccines in a simple format as unless I had read this about shingles vaccine being live, I would not have known.
I am thinking is it worth asking for pneumonia booster?
I got very confused with the pneumonia vaccines but I did eventually get the pneumococcal conjugated last year.By accident a GP trying to give me latest bloods ended up printing everything and against Shingles vaccination it says -Caution.
I do have Patient Access and I believe there is an NHS app that gives access to all results, but I have so many 🙄 and because I have IVIG every month I am able to get a print out every month. I am old fashioned and I prefer bits of paper.
By law you are entitled to your records. Ask the gp Receptionist to print off your latest blood test If done by the gp and collect it. I do this every time. The hospital however refuse to give me it for some reason after my check up, and say I don’t need it. Good luck 🙂
I fully confirm what Hazel has said. Even more so, if you enrol with Patient Access and make a written request to your GP, your medical records will be available on the app, including examinations, consultations, tests, treatments, allergies, blood test results, vaccinations etc. You can also order repeat medications online. For copies of xrays and scans, either paper copies or on a disc, a request to your GP using the form 'Access to Health Records under the Data protection Act 1998, (Subject Access Request') is needed, but cannot be refused (except for certain conditions under the Mental Health Act ). There is a small administration charge. Keep well. Freddie
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