PCR test is the first hurdle to get timely access to the new treatments we need such as Sotrovimab and Molnupiravir. Prof Adrian Bloor discussed all this at the CLL Support Jan 20 webinar, and it is important to get the test done to get the new treatments we need.
The bit of the presentation I didn't quite fully understand was an important requirement "You need to be within 5 days of the test to get access to the new drugs" (assumed the drugs won't be effective if taken too late). I assume in that they consider as soon as you get symptoms you would do the test. So a home PCR test should potentially save you I guess a days delay booking a slot at a testing centre.
For those that didn't get the free test sent to them by 10th Jan, one of the options is to ring 119. The understanding is the response to that is patchy across the country.
Not got the test kit yet but I can report in my case in North Oxfordshire the response to ringing 119 to ask for the test kit was good. There are about 6 levels of menus to go through to get to talk to the operator (and you can't rush them).
They will need normal contact details, plus have your 10 digit NHS number to hand.
If 119 does not work the link above gives other options to try.
I now look forward to the test kit arriving.
How did 119 work for you if you tried? (Link me to any posts if already discussed)
Best wishes to all,
Ernest
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Ernest2
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Hi Ernest2, did you ask 119 for a Priority PCR test kit. I am in the same situation but have found it impossible to get the Priorty test kit and have been told by 111 and 119 that the GP is the only one who can supply this. My GP accepts I'm not on the list but did not offer a PCR for me to hold. I have written asking for a Priority PCR. Awaiting reply.
Sorry, my type is stuck in bold no matter what I do.
It's too late to get the priority test kis.. You're right it is the GPs fault.. He didn't have the appropriate code on your health record when nhse did their one and only sweep for eligible folk but 119 are wrong too as gps cannot issue priority tests either.. Its a scandal so many of us have been excluded from the nhse. Database
After about 8 calls to 119 and different responses each time I manged to persuade them to send me a PCR kit. Unfortunately, this is just a standard kit and not a Priority Kit. Even though my GP medical record shows as 'Clinically Vulnerable Patient' I never received a letter or Priority PCR kit and there was no way 119 would send me the Priority kit without the letter. I will give credit to 119 as the kit was delivered the following day. The next hurdle is to understand how I can get the kit processed within the 5 day time period for antiviral treatment, the only advice 119 could give me is to give them a call once I have used the test kit.
They told me if they are called they'll arrange a courior collection for the following day.. that's not much help actually unless your "priority royal mail " post box does not collect over week ends.
The priority post boxes are for ALL PCR returns and as such available for everyone taking a test. Priority tests have a red label and are actually processed more quickly once they get to the lab thus enabling us to get our results in time to be considered for treatment
Ernest, as Annie explains the normal PCR test are returned by posting jin RM PRIORITY MAIL BOXES. Also, 119 advise that the normal PCR will be collected by courier the day after you request courier collection be arranged by them. Let us know PLEASE on this post what type of PCR you get. Thanks.
Having an extremely vulnerable note on your gp notes is not good enough sadly.. It has to have been APPROPRIATELY coded for the. Nhse data sweep to have picked you up.. I don't think a lot of gp surgeries have got the hang of appropriate coding. The extremely vulnerable list was annulled in September 21
Hello. You’ll see from my response to others that my husband is also in the same predicament about priority tests and “the list”…I wondered about, if he has to ever do the regular test we have here, writing in red pen on the packaging BLOOD CANCER PATIENT~ PLEASE TREAT AS URGENT. THANK YOU.
It certainly can't do any harm but maybe go for a walk in test too if he gets symptoms.. Evidently the results from them come back faster than postal ones.. I'm going to do both if I get infected and if they are long winded coming back I shall ring my cancer help line with a LF result for referral too 😜 I am determined to do my d#mndest to get some treatment.. I have things I want to do after Covid, me 🤣
us neither ...planning has to be day by day these days I think but it will improve ..hopefully this is the last of the worst ..the Spanish flu did go in three years more or less I think
I'm just off the phone with 119. The lady I spoke with was very understanding, understood the CEV position and knew about the priority tests, and that these should have been sent out by now. She took all my details down, including my H+C number, and confirmed the address which I had given was that which was registered with my GP.
I await this PCR test kit now, and whether or not it is indeed a priority kit.
I assume the system will check against my GP record or H+C number so if it is not a priority kit I will assume I am incrrectly recorded.
I must clarify that I dont feel especially vulnerable, largely down to an antibody test (but i know thats not the be all and end all) and my position of W+W with no symptoms, bloods only slightly out of line.
I have let things slide because of this though, I was given a booster on 1/11 - not a third primary dose. I have been on with haematology earlier and this is to be addressed but i'm not certain i wont have to ring them again. 3 months for me is next Tuesday.
It seems the vaccines are less effective against omicron and for me the important thing is to get quick access against any covid infection if its of value.
Its more about being on this elusive list, but happy to be told I dont need to be on it so long as thats an informed decision!
Hi easiest way is to check online for your nearest local walk in vaccination centre. There are many around so should not be far away. Go with a letter from your GP confirming your CLL diagnosis or just take paperwork confirming your disease status. Now they know all about 3rd priority dose and 4th booster. I went last week and everything worked like clockwork. In and out in 20 mins. Good luck.
Sadly it's too late to be added to the NHSE list now they did a obne and only electronic sweep in December last year. If we weren't recognised then it's because the appropriate code wasn't in our records then.. And 119 won't send a priority kit unless you are on the list. We are in a catch 22 spot
119 don’t seem to know what a ‘priority’ test kit is in my experience. I was sent a regular kit (components unboxed and thrown loose into a bag like you get at the test sites) but there is no ‘link’ between the kit and access to antiviral treatment. It saves a day. Which I suppose gives more time to ring around and persuade a n other that you need the treatment. My consultant was surprised I hadn’t received a priority kit through the post, even more so that 119 didn’t know what I was talking about. Not his understanding of how the process was meant to work at all.
It's all just so frustrating.. When we are told that we should be eligible to be considered for Mabs then excluded from the list to give us anything like enough time to access it.. I am thinking this is deliberate of the government to cull us
Hi Pageboy, you're right. 119 knows nothing. Think they are just couriors really, between NHS and public. Personally I am astounded about how little EVERYONE knows and that includes GPs etc. I guess they must be overwhelmed with all that's going on. I feel completely unhelped on this matter, except by Healthunlocked.com, blood cancer and the blood cancer Facebook page. With what I've picked up here I am better informed on this matter than any NHS person I've approached for help. I have no confidence that if I get Covid I will be able to get the monoclonal antibodies. TAKE CARE.
All very well to het standard PCR but they often take 72+ hours for results to return sadly. And standard tests are the only ones 119 send out unless you are on the NHSE DATABASE grrr. Its a scandal so many of us have been excluded from this database in my opinion xx
Hi Ernest, I ordered the priority PCR test kit online via the government NHS website, having to use the essential worker route as detailed on the letter I received from NHS Scotland, it was posted quickly and I received it the next day. I have used this postal way before, using a priority postbox and received my ‘negative ‘ result the next morning. Good luck and keep safe.
Hi Lemonbutterfly, the priority postboxes are just normal postboxes which have been designated and identified by the post office for additional collection of PCR postal kits. You find the nearest one to your home address from the online post office website. Good luck.
I'm afraid that my experience of 119 has been total failure. Having rung them 5 times, received a different reason each time for not sending out a PRIORITY PCR kit to me. They have given me totally incorrect info (I have reported it). Luckily, I have an amazing CNS who said of course I'd be eligible for treatment and to ring her if I get a positive LFT. I am lucky that I'm only a 20 minute walk from the hospital which is also a CMDU.Blood Cancer UK are interested in people's experiences and are using this info in their discussions with NHS.
Hello Ernest.I think I have tried everything and spoken to just about everyone about getting my husband a priority pcr test and on “the list” 🤦♀️
119 have been lovely each time I have rung, but are only able to send us a regular test.
I have got nowhere with the GP and the consultant said he will write to her but, judging by Annie1920’s replies, I think that sounds as though it’s not going to help😡
He has just advised that we ring the haematology unit if Paul tests positive ( and, presumably, cross our fingers!)
Paul had letter after letter from Matt Hancock, telling him how at risk he was, we had food parcels and we’re placed on the supermarket delivery list ( thankfully, because we have not left home for almost two years apart from medical appointments, and no way of getting groceries otherwise), but no priority test or letter! 🤷♀️
I’d like to say it helps that others are in the same boat, but I would like to think that everyone will be able to be treated if necessary…
I have found trying to get the Priority PCR Test Kit too exhausting. I have just come off the phone to the GP Surgery who have advised they have never heard of this. I dont need it anyway and yes I am registered as clinically vunerable, and basically "go away". It is not down to them. 🙈🙈🙈🙈 and 119 didnt understand it either.
It's disgraceful negligence on the part of gps.. They have been written to at least 3x times to my knowledge so NO EXCUSE for know nothing.. The CEV list was scrapped in September last year so that's irrelevant sadly.. I think many GPs don't know what they are doing with the coding leaving it to admin staff is my guess who know even less or AI which is not what the, AI system was supposed to do at all.. Grrrr
yes I did read this when it arrived as an email ..it says the NHS Data sweep didnt pick some of us up but it didn't say why'not especially when its not a definitive group of us that weren't picked up (eg those on W&W on treatment or post treatment ) which to me, implies that the coding put on by gps was at fault to acertain extent not just the data sweep criteria
The way I read it, it sounded like an admin error. I'm intrigued if GPs were involved exactly what they had to do. I can imagine a GP may have decided because they think I might be cured by FCR chemo (at least just at the moment) then I haven't "got CLL" at present. They certainly dismiss anything I mention of CLL because they think the Haematology is fine at the moment, but strangely ignore my abnormal Ig.
Well I'm happy to leave it all as a mystery as long as they now sort out everyone's test kits.
I'm on O+V treatment at the moment so we aren't in exactly the same boat but I do still think GPs have a responsibility here too.. There's no other logical conclusion to my mind.. Saying that I am pleased I have the priority kit at last too
I am afraid that is something one of the administrators may have to help you with or HUWith regard to whether it matters you were causing confusion with some members using one name and then replying with another. Gives the impression of two different people.
It’s genuinely a shame that you feel like this over what is just an administrative matter to choose one account. I’m not sure why that is a problem for you to such an extent that you’d feel the need to leave. I alerted you privately and politely about this so an accusation of bullying isn’t fair at all.
Annie/Rosetta, you aren't the first to have this problem. Unfortunately, I gather HU Support won't be able to merge your accounts. Hence I recommend you choose one account and just use that as it is really confusing to receive an answer from what appears to be a different member.
I'm assuming you are using two devices to access HU? HU Support can help you set up the replacement account on your second device if you've forgotten your password. First try to do a password reset and use your new password on both devices.
Thats ok Im going to unsubscribe on both of them so I dont upset/confuse any one any more..I was grateful for the support the site offered and interested in what others had to say but I cannot do with being attacked so good bye very good wishes to you and thank you
the CEV list was cancelled last September ! the new list is a NHSE database but its not possible to be added to it now ...some gps are just not interested in us grrr
In England I phoned my GP's office, surgery, this afternoon as I'd not heard back from letter about this. Asked if they had the Priorty PCR tests on hand, the experienced secretary there did not know what I was talking about, nor knew anything about referrals to the specially set up medical units to give monoclonal antibodies. Also she told me she was very busy and could not answer any more questions. Seemed to feel it was not part of her duties to answer my question. Oh well, at least I know that unless a GP phones me with clear directions of what to do if I get Covid, no-one will help me. Guess we fall into a small category of patients. Good luck to you all, I'm sure some of you will have better luck.
we should get together I have the priority test kit but no letter email or text
I had read this press release ..it says'some CLL patients haven't received a kit or a letter '...and puts the blame on the IT from NHSE but I still wonder why it is that there seems to be no rhyme nor reason to who got one and who didn't ..it wasn't everyone on W&W, everyone who has been newly diagnosed or even everyone on treatment ..so there is STILL a problem with the coding that GPs are/have put on our records or it would be some or all of those groups who were left out ..Its all verywell that we have got our tests for this access but if the coding is wrong will we be picked up for say a 5th covid jab??
Hi allI didn't receive the letter that we were supposed to get by the 10th January.
I tried 119 first who gave me the Tel no for Paramount.
It took me several attempts to get an answer, when I did, I was told I can sign up for the trial when I have symptoms.
They would send a PCR test kit and then I might be chosen for the trial, I had a 50% chance of being picked to receive medication!!
I then tried my GP surgery.
I explained that I hadn't had the letter, the admin team had no idea what I was talking about and told me to try 119!!
I put an hour aside and tried to wade through the options!
Eventually, I was put through to the Specialist team, they sent out a priority PCR kit, ( these are marked for quick turnaround ) I received it the next day.
Hoping I won't need to use it and if I do, I'm hoping my GP knows who to refer me to in the event of a positive result.
All Cll patients are eligible to be considered for antibody treatment ..at the nearest CDMU and gps can refer to that..absolutely no question about it ..the Panoramic study is open to most people now and you can refer yourself but as you say only a 50%chance you will get any treatment atall I know which Iwould rather have access to and ITS DOWN TO THE GP TO REFER YOU (IF he wont get on to 111 asap and they will even if you dont have 'the letter')
Thanks for your reply.I will just have to hope my GP knows he has to refer me, not very confident as the admin staff know nothing about it and as that was my job I know that the information would have gone through them initially.
its a scandal we have to fight so hard just to get what we have been told we have a right to grrrr I blame mygp for not reading the government edicts about coding that should have been put on our medical note ...but I know he doesnt have a handle on codes from previous run ins ...and put that with NHSE being so inflexible and you have a DOGS DINNER of a system sadly for us
I spoke to the admin team and gave them the code, they said that code doesn't exist on their system!I used to do the coding myself and would have followed this up and found out what is needed but came up against a brick wall!!!
thats a disgrace ..time to get on to the practice manager and/or the person in charge of IT I think and if no joy a formal complaint to the CCG or the GMC ..did she know you knew how the system worked ? I was categorised as severely frail by an automatic IT sweep in my surgery( I'm nothing like frail btw) one of the nurses told me that how they categorised me was none of my business ! I was just so cross.. incandescent I think is the word ... it took me more than three years to get that label off my records and now they haven't added the correct one for something I actually do have and was diagnosed with more than 14 years ago.. THERE IS NO EXCUSE if they don't understand how to code then they should have got some training a long time ago ..otherwise don't sound off on things they know nothing about ...sorry for the rant and sorry you didn't get very far too Keep on keeping on is the answer, I think
Sadly it is them and us and since we can't all ger together en mass we are just very small voices against a mighty machine within which very few individuals want to take any responsibility at all
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