I have found so many protocol errors during treatment with V+O.
Currently having a ding dong about getting vaccination with PCV13 as they either just can't read the small print of the footnotes in the vaccination schedule that says "any age severely immunocompromised" or don't place me in that category. Consultants at two hospitals have demonstrated a complete lack of knowledge about vaccinations for CLL. They are so disinterested that they can't even be bothered to find out by reading the relevant section of the B-S-H CLL guidelines. It seems they either skipped the vaccination part as being the GP's job or haven't read any of the document at all.
The GP has straight up admitted he knows nothing about vaccinations. It's the surgery nurses job!
GP has 11,500 patients on book. 4,000 out of 65 million are Dx in UK every year. That's 0.7 a year for my GP. Could be up to 25 patients with CLL that are incorrectly vaccinated at my GP alone. How that works out for all the other GP surgeries (50?) that refer to the two hospitals I've attended I don't know.
Fairly sure I've just been able the get Shingrx vaccine because I'm 65 but last year it was extended to over 50's with CLL.
PPV23 before treatment seemed to be news to them as well. That's also available to all over 65's and I was a few months off.
Read my bio for the rest of the muppetry.
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I worked for 6 months at a obscenely large retailer, Tram-Law, but the one thing they said that stuck with me was, "If you don't do it right the first time, what makes you think you'll have time to fix it later"?
Yes, the healthcare systems are beyond workload limits, but we are watching the end of healthcare as we know it. It is tipping and will not right itself. There will not be any amount of money, technology, or influx of workers to shore up the old ethos of medical care. The heart and soul of medicine has been gutted.
The only thing that they can now do is feign ignorance until the real ignorance envelops it. We will be culled through quiet care -like quiet quitting, Oopsie medicine is the new practice by attrition.
One of the most frustrating things I've dealt with since I was diagnosed with CLL has been accessing appropriate, timely vaccinations and I've often had to take a proactive approach to make health workers aware of what's recommended for me.
Thanks for highlighting the log for those in the UK. The UK guidelines (along with guidelines for some other parts of the world) and the CLL Support vaccination log are also linked in Part 4 of our pinned post about vaccinations: healthunlocked.com/cllsuppo...
I sympathise with your vaccinations rant. I had the same struggle to get PCV13 many years ago. The haematologist said vaccinations are the GP's responsibility, the GP said it's the Practice nurse, the Practice Nurse said ask the haematologist. 😟
My GP is a very approachable person and when I went back to him and explained the dilemma, he followed it up and agreed I should have the PCV13. Since then they have all listened to me re further vaccinations, including Shingrex. 🙂
When Shingrex first came onto the scene, I mentioned it to my haematologist and he thanked me for letting him know. He hadn't heard of it and was pleased to know there was a non-live shingles jab that CLL folk could have. 🙂
Many years have passed since then. I'd hoped that the NHS would have got their act together by now. But it seems not - or at least it's very patchy. I'm still hearing of people in the UK who are struggling to get the appropriate vaccinations, at the best time. Sad but we have to be our own advocates at such time, and present people with relevant evidence at times.
In America there are now some updated PCV vaccines called PCV15 and PCV20. They give protection against a greater number of strains of pneumoccal infections. Of course we need as much protection as we can get, but I’m not sure if those updated ones are available in the UK yet. Has anyone here in the UK been able to get PCV15 or PCV20?
CLLerinOz I’ve just seen your reply to Skyshark. I was going to add the link to your Vaccinations post, but I see you’ve done it! Great! Do you have any updates on the latest PCVs in different countries?
Yes, Paula, the pinned post provides an outline of Pneumococcal vaccination recommendations in different countries, including PCV 21 as well, where it's available. healthunlocked.com/cllsuppo...
I'd hoped things would have improved by now, too, but, just last year, I had trouble getting the right Shingles scheduling and ended up seeking out multiple health providers before one was across the guidelines. A shortage of vaccines at the time that I needed vaccination exacerbated the issue, unfortunately, but, nevertheless, at every provider before the one I eventually found who had both the knowledge and the supply, I had to show a copy of the guideline for the immunocompromised to convince them that my schedule could be different from that for the general population. It's so frustrating.
I’ve taken my eye off the ball a bit since the vaccination schedule I got in 2022 after CAR-T. For that the hospital gaved a three page schedule of what I needed to have and when which I presented to our GP’s nurse. Her response was good apart for the smile and “Oh all the baby jabs”.
I found that, so long as I get to talk to the same person I get a bit of continuity that helps. I avoid one of the GPs who seems to have no time for me.
Long time no speak PaulaS , hope you’re both well.
Peter and I are well, thanks, though increasing age is taking its toll - especially on me! We still get out into the Peak District when we can, though our walks are shorter than they used to be.
I hope you two are keeping well, and you're still able to do your Morris Dancing on the hills.
I've had PCV 20 and 23 from gp nurse after having had to get a letter from consultant though😢. I have read that we may well need them again in the future which could be another battle 😂😂sadly many gps were trained when CLL was considered to be untreatable and really just part of the aging process for many folk.. Your %figures of how many CLL patients an individual gp is likely to have could well be way way out since there are very few single doctor practices now (since Shipman)
One problem with the Vaccination Log is that it doesn't mention that Pneumovax 23 should be repeated every 5 years. My haematologist thought that it was a one time only.
I am very apprehensive that it will be a battle to get the next one.. Gp nurses do seem to run on tick boxes and if there isn't one nothing happens in my experience
I had my latest Pneumovax about three weeks ago, and was proactively called in for it. My practice do seem to be on the ball, BUT that's only as long as they have it on their system in the first place. If it's something new, then it pays for us to be on the ball.
I learned early on that the easiest thing to do was to take control of my own vaccinations. I had the same problems ans you - from pillar to post. Obviously taking guidance from both GP and haematologist. Sadly no one person does this for you. I have just found out I should have had a bone density scan as part of routine testing for my age. It slipped the net, so it’s another on my list now. Good luck and all the best. And don’t forget, if in doubt, ask this group. There is always someone who knows 😁. All the best
I have several long term medical conditions and I find keeping track of tests and interventions very hard. I went for a bone density dexa and no-one told me the results for months. There seems to be a lack of across the board assessment.
Since I lost my spleen in 2015, it’s been fairly easy to keep up to date with vaccinations. Kings gave the GP a list of what was needed, and how often. I am also lucky enough to have a haematologist who is on top of things like vaccinations and will include any requirements in the post consultation GP letter.
The only one that I haven’t been successful with is the RSV, despite the fact that it is supposed to be available from the GP but needs to be ordered separately from the NHS vaccination program since I am not over 75
RSV vaccine was mentioned on the BBC news this morning and immune compromised were mentioned. The NHS website is not clear but might be worth asking your surgery again, especially as you have CLL and no spleen.
Not trying to be a PollyAnna, rather a bit of a Bull,
The systems are broke, they always have been and will continue to fall short. Yet, steel sharpens steel. Bring the Forge to them. Don't let them steal your fire!
Keep doing the Skyshark advocacy, it will pay off for you, and it encourages others to do the same.
We appreciate your strong words and Shark observation. Glad that you are able to stay on it Shark.
We have similar muppets here in the USA. I read the weekly newsletter from YLE Your Local Epidemiologist substack.com/redirect/bc95c...
And scheduled a flu & Covid vaccine online for today, but the CVS pharmcist called back and refused to administer the shot since I am 19 days short of 6 months from my last vaccination. The idiocy is mind numbing.
That's not *the pharmacist* refusing the shot, that's *the insurance company* refusing to pay the pharmacy until at least 6 months ticks over in the computer. If you are paying cash and they are refusing, them I agree it's the pharmacist, if you tried to explain "this is the most convenient time for me" and not 19+ days out.
There aren't insurance companies involved in the UK.. But the gp nurses in our surgery are very rigid about the 6 month rule and the 2 week rule between jabs
It's the same in Australia with regard to strict adherence to 6 months, etc. That's because pharmacies are reimbursed for what can be expensive vaccines e.g. Shingrix, by the Australian government through the Pharmaceutical Benefits Scheme.
Green book chapter 25-8 says there's also a 2 year rule for PCV13/15 or additional PPV23 after prior PPV23. Theoretical risk of pneumococcal serotype-specific hypo-responsiveness with re-vaccination.
Maybe you would be happier in The United States, where folks here get to choose their docs and hospital as long as they can show they can PAY. Each year there are 530,000 medical bankruptcies filed, with 300,000 of those families losing their homes. I called my primary care doc's office last week to have them look at a burn and was told April 6th was the earliest appointment date (and the doc had no vacation scheduled because I asked). I was told that maybe they could work me in the schedule if somebody cancelled, or I could go to an Urgent Care clinic where they may or may not accept Medicare. Likewise, I have CLL and have had at least a DOZEN vaccinations in the last 2 years with no problems. By the way, the last statistic I saw said that "In 2024, the average annual premium for health insurance in the United States was $8,951 for single coverage and $25,572 for family coverage". I pay $185 per month for Medicare (for 80% coverage) and another $185 a month (for the other 20% coverage) plus a $2540 deductible (up front out of pocket) for my meds. A total of nearly $7,000 per year for my Medicare insurance. In addition, I have been paying about 1-1/2% of my annual salary (matched by my employer) my entire 40+ year working career into Medicare. I'll trade for your UK (or Canadian) health system any day.
I have finished treatment. PPV23 was given about 8 weeks before starting. I'm now trying to get the PCV13 as a catchup pretty much 2 years after the PPV23.
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