Hi all I asked my GP about the RSV vaccine for the immunosuppressed today. I was informed there is no plan to provide the vaccine for this group unless they were over 75. Wondering why and if anyone else in the UK has been told the same or different?
Ann
This is correct.
gov.uk/government/publicati...
Hi thank you for your reply Skyshark. I don’t understand why the government identify the immunosuppressed as at greater risk from RSV yet don’t offer the vaccination until they reach 75! Any ideas?
Ann
Probably cost - says she cynically.
I won't hazard a guess about U. K. as I understand the healthcare decisions are handled quite differently there.
To my point of view, how are respiratory infections supposed to know what age you are? They're going to grow where they find a host. If you have a history of getting sick in the lungs and recuperation is a battle, prevention is the only rational answer.
I can only agree with you. To identify us as vulnerable then decline to offer a vaccine that would help is irresponsible to say the least.
Ann
Oh gosh, here in the US, it is recommended. We got our last year and glad we did.
We had the same problem with Evusheld which I believe you also received. All wrong.
Ann
I recently had a covid vaccine and flu shot on the same day, and the person who administered the vaccines in the drug store (in the US) told me that the RSV vaccine was not being recommended for anyone under 75 years of age, OR immune compromised. He recommended waiting three weeks from the time of my vaccines before getting the RSV vaccine. I will be getting it then (being 75 and immune compromised and suppressed). Jim
Good to hear you will be getting it in the US. The UK as far as I know have not given any reason why the immunosuppressed or those under 75 or over 80 won’t receive it. Seems irresponsible to me.
Ann
Hi jimvan, Last year the CDC stated that the end decision could be made in consultation with one's doctor, without a note, prescription or letter, your verbal acknowledgment was good enough.
Of course we're well aware that the recommendations can change from year to year so you may want to verify if the case still stands that way. Because the age line was drawn at age 60 at that time, I was not going to not protect myself for five years.
That they change the ages with out medical reasoning in the statements, seems to show evidence of it being an arbitrary policy choice.
Good health to you!🙂
I believe that the GP can purchase doses for patients who fall outside of the ridiculously narrow parameters in place at the moment BUT they can then recover their cost by billing the NHS. I haven’t yet approached my GP but I would be surprised if they would agree to this given the additional admin involved.
So I guess it will probably need to be sourced privately.
Shooey
Thank you I will address this on a personal level with my GP. Was this advice given in any government documents you are aware of?
Ann
Hi all I have addressed this matter with one of the GP’s in my practice today who has rejected my request to consider getting a vaccine for me or consider a spare post the 75/79 year old clinics. In response I have written to my MP copying in my GP practice and my haematologist.
It is interesting to hear that you can negotiate with your GP, even though that was last year’s advice, unfortunately the GP involved in this did not allow any negotiation and sent his response, no, via the receptionist.
Ann
Thanks Ann, very disappointing and short sighted. I have messaged my immunology team and will also be raising it with the oncology team at next weeks appointment.
I’ve searched high and low to try and find the article I read but no luck so far, thought I’d bookmarked it but obviously not. I remember it also saying that GP are not allowed to purchase doses and sell them on to patients which again seems a very backward thinking policy.
Will let you know if I make any progress!
Shooey
Hi Shooey thank you for your reply. I have contacted my GP, Haemotologist and e mailed my MP, copying them in, on this matter. It certainly is backward thinking and doesn’t promote the prevention policies this government were aiming to provide. Smacks of finance and the Evusheld debate during the pandemic too. I can’t believe they go so far as to highlight our vulnerability to RSV in their government guidelines then don’t provide the protection they themselves are stating we need.
Ann
Well said, 100% agree with you. I will also email our new Green MP , they appear to be the only party who actually have a documented covid / clean air policy and recognise the need to be proactive in the health field.
For years I’ve suffered chest infections, usually one nasty one per year. My recent Covid infection, my first , resulted in a chest infection which was worse than Covid.
Will let you know if I make any progress!
Shooey
I asked my surgery yesterday, having seen a poster. They told me that they had done an RSV clinic last Saturday and had no plans to repeat it. I pointed out that I hadn't been informed of or invited to this, despite being 76 and immune suppressed. I got a call back to say they had spares in the fridge so I could go in today and get one.
This just reinforces that we often have to ask for what we need, even when we are entitled to it. I'll have a chat with the nurse this afternoon. I find that they have time to listen and are often a good conduit to get patients' views to the GPs.
I also have a new, and listening, MP, so I'll be writing to her to bring this issue to her attention. Keep asking for what you need, as loud as you need to.
I turned 65 this year. Haven't had an invite for shingles vaccine (adverts are all over Facebook). Last Obin IV was August '23. When should go and ask at GP?
Hi if I were you I would keep asking GP until you get it. You need the shin grin vax not the live shingles vax. Good luck.
Ann
Agree and I called my surgery yesterday to book and was surprised when the receptionist told me I was the first caller to meet the criteria, and no I hadn’t had a message telling me about it either. Sadly another example of how important knowledge is.
Colette
Thank you I will follow your lead and address this with my GP and my MP.
Ann
If anyone is interested in getting an RSV vaccine done privately - I live in the Midlands and have been able to book one through Pharmadoctor.co.uk. They link to a number of chemists who offer vaccinations, and booking was easy. I'm not having it for a few weeks as I have a flu vaccine coming up, but my understanding is that it is £200 and they can offer one of two brands of RSV - I've asked for Pfizer. I know its a lot of money, but having spent 3 months coughing and having multiple courses of antibiotics earlier this year it feels as if it will be money well spent!
I had a similar answer from my GP - only 75-79 year olds. I'm under 75 so won't get it. As I don't suffer from many chest infections I left it there! My husband, over 75 will "be called" when it's his turn.
I got my pneumonia vaccine earlier than the UK pay for - my consultant haematologist asked my GP in his report if he could organise it. The GP had to get permission but they got it and I got the vaccine. U might need your haematologist to ask your GP in his / her next review letter to the GP
I get mine in 2 weeks and yes, apparently over 75. So sounds right.
Hi yes you’re right, thanks for your reply, that is what the guidelines say. They identify the immunosuppressed as vulnerable but no vax!!! Seems irresponsible to me. Maybe another situation like Evusheld is on the horizon!!!
Ann
The FDA and CDC both said it was a boon to the IC community, but it wasn't studied in them and is not officially recommended for them in the USA. I was speaking today at Immunologic Approaches to Prevent and Treat Infections in Immunocompromised Hosts: The ImmunoPTImize Network Workshop and it was it was a huge topic of discussion. Research is coming, but not real soon. Trying to fix recurrent issues like this for the IC community.
Brian Koffman
CLL Society
Hi Brian thank you for your reply very interesting. It seems you still have a long way to go in the US despite being ahead of us here in the UK. I thank you and wish you well with your efforts. I hope the research comes sooner than you suggest. Not sure who is trying to help in the UK maybe someone on this site can help with this?
Ann
i caught RSV from my 3 year old grandson two years ago. Here on the East Coast of USA the breakout was widespread and severe two years ago. He ended up in the hospital with pneumonia. I was very sick for four weeks and let me tell you this is not a regular cold. The coughing was nonstop. Became bronchitis and took three different antibiotics to clear. Last year the RSV strain was not as severe as two years ago but my husband and I still got the vaccine. No side effects for either of us. I’m getting it again on Monday.
Sorry to hear this SUNFISHJOY glad you recovered. Glad to hear you have had the vaccine and no side effects. Which we could get it in UK without age restrictions.
Ann
Wow. Does RSV jab have to be repeated??? We are being offered a one off jab here in the UK... Or are there different jabs now available usa/uk ?
Hi not sure if the RSV jab has to be repeated or not Rosetta. Hope someone else can answer this question for us it is an interesting one.
I was Highlighting the fact the government guidelines state our vulnerability in black and white but don’t provide it unless we are over 75 and under 80!! Irresponsible in my opinion.
Ann
Hello Ann,
I too contacted my GP surgery almost knowing the response & sadly I was right. RSV vaccinations only for over 75’s & pregnant women ( don’t quote me but I think a small cohort of children was included). I checked this on the government website which confirmed the criteria. Sadly GP’s are not allowed to use the vaccine if we offered to pay privately, the stock procured by the NHS is strictly for NHS patients, we cannot access the supply that is sent to GP’s even if they wanted to offer it to us!
It can be accessed privately by some clinicians but not in a NHS setting, cost ranges between £180 - £500 depending I guess how fancy the clinic is!
I really cannot understand why our cohort has been excluded, I’m 70 & have always been proactive with regards to vaccinations that I just can not for the life of me understand the exclusion.
Wendy. 🤔
I don’t understand either Wendy it’s not preventative or cost effective. Wrote to my MP, GP and haemotologist spelling out all of my issues out but don’t hold out hope. We had the same problem with Evusheld during the pandemic. My MP took it up on my behalf and still got nowhere!!!
Ann
I was told the same, and even if I wasn't imunocomprimised I still couldn't get it because I am over 80 years old. So I am exluded because I am to old. Why? Penny piching? Ageism?
I agree. I’ve asked my GP if they will order me one or give me a spare post 75-78 vaccines. I was told no. I’ve written to my MP but I don’t hold out any hope.
One person who replied to me said you can buy them for £200. I will consider this but only after a face to face with another GP in my practice.It's agist, discriminating and prejudiced in my opinion.
To identify us as vulnerable then deny it unless aged between 75-78 is outrageous and irresponsible.
Good luck
Ann
I thought I would join this RSV post to add my own disgust and contribute to the conversation.
I am 82 this month, have cll, spinal problems and am very breathless, due to suspected heart failure, and have shielded, taking care of myself alone since the pandemic started. I suspect should I, despite all my precautions catch this respiratory illness, ending up in hospital would be the least of my problems.
Requesting the vaccine at the surgery I was told an emphatic no. They are not allowed to give me it, despite my obvious breathing problems. If someone here in the UK finds a solution many of us I feel would celebrate.
Bubnojay
That’s absolutely shocking Bub and so short sighted medically. Makes me fume! 😡
Let’s hope we can make representations both individually and collectively through the blood cancer charities to move the health authorities forward on this need.
The placard I read recently sums this up for me;-
‘IMMUNE COMPROMISATION IS AN EQUAL OPPORTUNITY ISSUE!’
Best wishes my friend,
Newdawn
Hi Newdawn good to hear you agree. It prejudices and discriminates against the vulnerable, like us. It certainly is an equal opportunities issue.
Personally I find it insulting to read the government guidelines which address our vulnerability then tell us we can’t have the vaccine unless we are 75-79!!!
I have written to my MP, GP, Haemotologist and the CLL society to raise awareness and to ask for support. Other than a message from my MP to say he has received my e mail I have had no replies yet. I hope the CLL society has more luck.
Take care
Ann
Hi bubnojay that’s appalling. Has you GP refused it? It’s worth a try asking for it under your circumstances. Someone mentioned their GP had ordered one for them and another person was hoping to get a leftover vaccine from the 75-79 clinics.
Ann
Seeing my GP tomorrow and will raise it with her and let you know what she says.
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