My husband is currently undergoing the watch-and-wait programme after receiving a diagnosis November 2024. As CLL is all new to me, I am diligently seeking information to provide the best support for my husband.
Last week, my husband attended his second, three-month appointment with a haematologist. During this visit, I inquired if he should pursue the RSV vaccine as someone with CLL. I specifically asked if my husband should consult his general practitioner (GP) for this vaccination. Additionally, I highlighted the current criteria for eligibility, which are limited to individuals aged 65yrs in the current year and pregnant mothers. My husband is 69 years, therefore excluded from the current program.
The haematologist was unaware of RSV and did not provide any further comment. He simply stated, “ I am unaware of RSV and will need to research further.” I was very concerned re his lack of knowledge and the way my questions were just dismissed. Other issues added to my concern re his lack of knowledge and professionalism.
Am I wrong to feel anxious and should I contact my GP to establish availability and the eligibility re criteria for the RSV vaccine?
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sunshine-happy
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Sunshine- I'm in the US and don't understand the NHS rules for these vaccinations, but I was diagnosed in Feb '24 and my CLL specialist recommended I receive the RSV vaccine. I got it in October. She didn't say it was urgent, but rather a good idea. I'm 64 and in the US I had no trouble getting it as I believe it's offered to anyone over 60, small children and pregnant women. I would recommend you discuss this with his GP. Bigfoot
Currently the RSV vaccine is limited to 75-79 and pregnant women. But I would check the NHS website occasionally to see if they widen the criteria in the future.
I am afraid in my experience Consultants, GP’s and practise nurses are not always up to date with the vaccines we should have. There are pinned posts on the right and if you haven’t joined the CLL Society do, they have great information and patient conferences. They have a section called What vaccinations should I have.
Hello Sunshine, here is what AI says about vaccines for us, which is in accord with the advice given me by my doctors:
For CLL patients, getting vaccinated is crucial to prevent serious infections due to their weakened immune systems. Recommended vaccines include the flu shot, COVID-19 vaccines, RSV vaccines (especially for those 60 and older), and pneumococcal vaccines. Vaccination plans should be personalized, considering individual health needs, treatment history, and immune function.
I do not know how your NHS works and if there is any leeway built in to deviate from their guidelines when dictated by common sense. I think it’s dumb to deny simple things such as simple vaccinations to an immunocompromised population where most all doctors would agree a deviation from the rule is fair and necessary. It’s not like you are asking for a million dollar heart transplant.
I do know how many bureaucracies work though, and if there is no leeway built into a rule, then you have to change the rule. As a practical matter, we as patients lack the resources, and time, to change rules for NHS, in your case, or Medicare, in my case.
To more directly answer your question, I do think you should talk to your GP to see what the eligibility is for the RSV vaccine and, if you do not meet the criteria, is there some appeal process to allow for common sense exceptions to the rule.
I would imagine one could get the RSV vaccine by paying for it, but I think it’s an expensive vaccine, may be $200 or more. My argument to NHS would be that the cost of the vaccine is way, way less than the cost of hospitalizing an immunocompromised person who gets RSV.
Sadly not yet eligible to me in the UK as I'm only mid-50s. I'm going to keep an eye on UK HSA's website (this is the UK Government agency that reviews NHS access to vaccinations) to see if they make any announcements about RSV vaccines for us younger CLL folks.
I have made a note in my diary for June/July to consider obtaining an RSV vaccine privately if at that point there's no announcement re. NHS availability for Winter 25/26. A quick look online now shows it will be around £250.
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