Interesting developments which I have briefly outlined as might be relevant for others. I never received the recent NHS letter regarding Priority PCR tests and have checked that I am correctly " labelled" by my GP as high risk category for developing complications from COVID -19. Then found that I was unable to book a booster . Spoke to the vaccination " expert" at the surgery and it transpired that both my wife and I had the third vaccine wrongly coded. Although the card clearly shows third vaccine the NHS records showed them as boosters. She explained how complicated the recording system was and they had missed recording that I was CEV. This has now been rectified and the booster ( 4th vaccine ) has been arranged for next week. Slightly annoying as my second Shingrix vaccination was due at he same time but I have been advised they should be kept seven days apart and I really need to prioritise the Covid jab.
However my wife is not eligible for the 4th vaccine whereas previously she was allowed to have her vaccinations at the same time as me. I suppose this is logical as she should at least be receiving some protection. As an aside we decided to do an antibody test for her with Monitor My Health and pleased to report positive results.
Following the recent CLL webinar and the excellent presentation by Professor Adrian Bloor I understand better now what I have to do if I test positive as there is very limited time to react to get immediate treatment. Fortunately my local Haematology Department is based at the same hospital as our local CMDU which might help.
However, I am left with one minor problem and that is getting hold of a PCR test , to keep in the event I experience symptoms as according to the online website I am not eligible to get a test in such circumstances - I need to be experiencing symptoms or be in a priority occupation. I suppose that i could make a mistake on the application and tick the wrong box- after all thats exactly what the NHS did to get my records all wrong ( and not just once! ). Alternatively as many others have been doing I need to contact 119 and jump through another umpteen hoops to get a ( non - priority) test kit unless anyone has a better idea
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richardp
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I wouldn’t worry about getting a PCR test in the event of having symptoms Richard. When I contracted Covid, I hadn’t at that time received a priority test in the post but it was done quickly at a testing centre and back in 26 hrs. It still activated the response for therapeutics. You can order LFT’s to keep in the house and with a positive flow, quickly be offered a PCR at a centre. 119 made me an immediate appt. It’s probably quicker than sending one off to be honest.
I agree with Newdawn. I did jump through many hoops and have a registered non-priority PCR test at home but have been repeatedly told that a drive through test is much quicker. If I find myself in that position I will be telling my medical team, GP if available and the test centre, maybe taking proof of my condition etc. As Professor Bloor said we have to be our own advocates.
I think what Richard is referring to is that you can only book to get a PCR test, say at a testing centre, if you meet certain conditions. If you have a positive LF but no symptoms you cannot in theory book to have a PCR. I think in these circumstances if in doubt I would develop a mysterious continuous “cough”. I don’t have your experience Newdawn of actually going through this so maybe it works better in reality.
If you didn’t have any symptoms, I’m not sure why you’d submit to a PCR. Of course, known exposure to someone positive should trigger this test and I know people for whom it seems to be a testing event every couple of weeks. However, all this testing activity seems to be gearing down in the U.K. The guidance does say a PCR should still be done for those likely to need treatment. I can’t honestly see an issue with receiving a test. When I booked, the positive LFT was all that seemed to matter.
Frankly, I’d be so stressed (and was) when a LFT confirmed a positive result that I suddenly developed stress symptoms! 😉
Possibly did not explain myself very well. The point of the NHS ( theoretically) sending out the priority PCR tests is that ( to quote them) " so that you can get tested quickly if you have any coronavirus symptoms". So it was suggested that anyone who is CEV will always have a test kit available in such circumstances. At the time they were originally sent out there were delays in getting the results back ( but better now) and it might have been too late to get the drugs in time as time starts from when you first start to feel unwell - I think it is five days maximum- not from whenever you might get the results. I was not suggesting that you would take a PCR test if you had no symptoms which is clearly pointless but I want to protect myself as best as I can as I have learnt that no one else will. Speaking from some personal experience as my sister in law aged early 40s has just died from Covid and although not a CLL sufferer was in the CEV category for another reason and despite every effort could not be saved and it was too late to give her any of the new drugs.
Also, of course, you can not contact your local CMDU direct but as Professor Bloor stressed, you can do that via your GP, Consultant or 111.
I absolutely understand what you’re saying Richard and I’m sorry to hear Covid has impacted your family so personally. My actual experience of trying to access this service was quite different to the ideal sometimes presented. The difficulty was compounded by it being Christmas weekend and services closed down. Frankly my GP surgery, haematology unit and 111 couldn’t assist at all and certainly couldn’t direct me to the CMDU. I rang them all and spent most of Christmas Day on the ‘phone to 111 who literally had queues stretching hours. I’d already tested positive and kept expecting the contact call promised in the letter from NHSE.
I was on my 4th day (probably more likely 5th) when the services ‘awoke’ from their festive slumber and got me in for a Sotrovimab infusion.
After I recovered from Covid, I received the priority PCR kit (I’d received the letter however explaining I was on the list for possible treatment). As you say, the numbers presenting for PCR tests have reduced massively but I felt going for a test immediately was probably quicker than sending it by post. Just my experience which frankly was stressful. I suspect I was one of the first they’d had in the newly developed CMDU from the reaction I got.
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