Yesterday I emailed my GP (Archers Practice in Eastleigh, Hampshire, UK) to request the RSV vaccine.
I am 69 and have CLL and COPD and I'm a type 1 Diabetic, they told me to come in this afternoon. They refused to give it despite me providing the guidelines to them in the email!
Younger people will be denied access to this important vaccine; be aware fellow CLL'ers!
Signed: Mr VERY Grumpy
Yes this has been discussed in this post Maranman. It’s very unfair and short sighted!
healthunlocked.com/cllsuppo...
Newdawn
Hi I write a post last week about this being in a similar position to you, vulnerable & under 75. I wrote to my GP, MP and Haemotologist. I have had no reply from any of them so far. It’s very short sighted not to give this vaccine to the vulnerable, neither preventative nor cost effective.
Ann
Hi Ann
Discussed this at my oncology consult yesterday, he was in agreement that it appears to be a very short sighted policy but he felt that there was a chance that the eligibility criteria MIGHT be expanded but it was only a MIGHT.
He also said that those of us who are fortunate enough to have IVIG treatment may possibly have gained some antibodies to RSV through that , although without testing we don’t know.
This was the reason given by immunology for not giving me the pneumonia vax, although, again without testing we don’t know.
As an aside, I’m four weeks post my first ever Covid infection and feeling awful still, picked up a cold from somewhere last week despite masking. The fatigue is really getting to me. I’m so pleased I had bloods done on Monday in preparation for my appointment as I thought the CLL had woken up. Anyway, it hasn’t but my haemoglobin is low so slight anaemia which is probably causing the fatigue.
Apparently the virus can infiltrate the bone marrow resulting in reduction in red cell production hence the anaemia.
Very timely that I had the bloods done when I did, now swigging back Floradix , eating dark chocolate and dried apricots etc etc
Shooey
Hi Shooey what your oncologist said is interesting 🙏 criteria changes. I was told to ask my haematologist to support my need for the vaccine in his next letter which I will do when I see him next.
Sorry to hear you have had Covid let’s hope you get some antibodies from it to protect you in the future.
It’s great news your CLL hasn’t woken up. I hope you get treatment for your anaemia and you feel better soon.
Ann
It should be available privately. My haematologist said it would be off license (?) but worth doing. I finish Rituximab next month so will pursue that a few weeks later.
Can you buy it for cash against a prescription?
In the UK not at the moment, sadly but if you are between 75 and 80 there are some pharmacies giving it for free under NHS
Thank you, I will be looking into that if there are no changes to this short sighted policy.
Ann
I think this could be something that your consultant haematologist should follow up on your behalf.
Get the consultant haematologist to write to your GP stating that this vaccination is necessary.
Under the old COVID rules, we with CLL, are on the vulnerable list, and therefore should be eligible.
See also my previous post on this subject.
healthunlocked.com/cllsuppo...
Dick
My consultant haematologists at two NHS hospitals (in the same trust) know nothing about vaccines. All three times I've asked about vaccines I was told to just go to my GP.
There is a letter in my records from haematology to my GP that indicates my GP enquired about vaccinations. This letter states "He can receive any vaccines that are not live vaccines".
As a result of this ping pong void of knowledge I didn't receive the PCV13 vaccine before treatment. I only had PPV23.
In March 2019 the Royal College of Pathologists (RCP/RCPath) that at least one of my haematologists is a Fellow of (FRCP/FRCPath), conducted an audit regarding compliance to BHS 2018 guidelines. If conducted today they would fail this audit on item 14. This clearly places responsibility on the haematologists to offer these vaccines, even if that's just a letter to the GP.
14. All patients with CLL should be offered pneumococcal vaccination in the form of the pneumococcal conjugate vaccine (PCV13 or Prevnar 13) followed by the pneumococcal polysaccharide vaccine (PPV23 or Pneumovax), at least two months later.
rcpath.org/resourceLibrary/...
The RCP audit is woefully out of date and needs to be repeated as 2022 BHS guidelines removed a whole slew of chemo treatments.
Muppets, top to bottom.
I'm a spring chicken at 66, too, and hit that problem. After their refusal, I was going to write to the GP with the guidelines, but decided against, given their definite negative response to my initial request.
Given that RSV is airborne, and I wear a well-fitted FFP3 every time I leave the house to protect against Covid (successfully to date), I figure the risk is really low, so I'm picking my battles.
Don't blame you for feeling grumpy, though.
I had RSV privately (UK) last winter. Think I paid £260 for it and got it locally from Pharmadoctor. It lasts for 2 years but whether we mount any response or get any protection, I do not know. It is very short sighted of the NHS to not make it available particularly people on their CEV list for e.g. covid irrespective of age.
Kate
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