Looks like another potential win that turned into an own goal. I guess I’m one of the lucky ones as I automatically got my PCR test, I’ve just never needed it.
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Husband just got phone call from haematologist office (re our letter). The lady insisted he must be on list because he’s had previous letters! System is working well according to her; a couple of patients have already had nMABS so the system will pick you up. Letter will be here by end of month - and there’s a number to ring if PCR doesn’t arrive. She clearly hadn’t got a clue! And nobody else has said they haven’t heard … we’ll that because those who’ve had letter are okay, and those who haven’t probably don’t know they should have done.
The only comfort I got from the call was if hubby tests positive we can ring them and they’ll arrange nMABS because it’s same hospital - so just got to hope (if needed) the standard test is processed quickly and it’s a weekday during working hours!!! It’s all so b****y frustrating 
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Pleased you have the reassurance they will arrange treatment if necessary. I’m trying to arrange a new course of Covid vaccinations 3 months after a stem cell transplant and despite attaching a template letter explaining why and how it should be given, the admin staff at my GP’s surgery are insisting I actually need a third vaccine. It’s scary admin staff are giving vulnerable patients medical advice. It doesn’t inspire much confidence.
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I know! My husband had the phone on loudspeaker and I kept mouthing “tell her to pass our letter to Dr K” - because I’m pretty sure he’s never seen it!
It didn’t help that every time she said ‘ooooh, you’ve done the right thing’ I kept visualising Sybil Fawlty saying ‘oooh, I know’
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Our emails to John Redwood & Sajid Javid went off this morning - and I copied Andrew Gwynne in on the one to Mr Javid. I noticed the auto-replay received from Messrs Javid & Gwynne said they can only respond to their own constituents (which we’re obviously not) so not sure if they will actually be read … but worth a try.
I don’t know if you noticed that the Mail on Sunday had an article today on the 500,000 immuno-suppressed people who are still shielding and nMABs/antiviral treatments were mentioned. There was a brief mention of a lady in N.I. who hadn’t had a letter yet, and the fact that there are problems - but that was it! I’ll let you know if anything comes of our emails.
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Well yesterday’s emails got some response. First of all the surgery came back with a telephone appointment for next Monday - so Robin can speak direct to GP and ask about his code. Also we’d like a plan B in case it’s needed. I sometimes think the surgery aren’t even aware he has blood cancer unless he tells them!
Then we got a reply from our MPs assistant; she was sorry to hear about the problem and will investigate. She’s going to start with our surgery and, depending on their response, take it from there. I don’t know how much surgery will tell her - but she’ll have connections we simply don’t have. Not much more we can do for now. 
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That’s really positive. You’d think though changing a code would only require a phone call or an email. It’s a relief to see omicron infections falling too, though all restrictions being lifted on 26 Jan will unfortunately make it more difficult for us to shop, use public transport etc.
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Hi @Ruth, I hope you & your husband are both keeping well? Your current situation is mirroring so many coming through our support line. We fully understand how confusing, anxiety provoking & frustrating this is! We have been taking back many case studies to our conversations with NHSE and hope to put continued pressure & focus on the areas that have gone so badly wrong.
You had previously noted that although you have a standard PCR sent, drive throughs may very well be quicker ( if possible) & that is also our thoughts.
It’s great to hear that your methods of escalation have been heard & you have a response so please do keep us posted on what comes if this.
We really do appreciate everyone’s efforts in continually advocating for not only themselves but also for so many of the blood cancer community.
Best Wishes, Lauran
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MP’s Assistant emailed today to say she’s been in contact with our surgery; they will look into it and get back to her - so she seems to have got further than we have with them!
Just read a slightly worrying post on Chronic lymphocytic leukaemia (CLL) Support Forum from someone who’d managed to get their GP to correct their code. This person then contacted NHSE to say their code had been corrected and could they now have the letter & priority PCR - and the response was no, they can’t send them out to people who didn’t get them first time round! So, if that’s correct, even if codes are amended people still won’t receive priority PCRs??
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Oh @Ruth, I think everyone’s experiences seem to be different from what I am reading, but what I would say is at least your MP’s assistant is working well.
Please keep us updated and look after yourself.
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That’s crazy. Perhaps the person they spoke to didn’t fully understand the situation.
Is BCUK able liaise with the NHS to find out whether the information given to Ruth is correct and if so try to reach a resolution?
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Hi @Paul I will copy your question to @BloodCancerUK and @Alice_BloodCancerUK for you.
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Hi @Ruth and @Paul, we’re working fast to try to seek clarity on the process and timelines of getting a priority PCR, but in the meantime accessing a drive through test is likely to the be the quickest option but might be worth keeping a PCR test at home in case there are any issues accessing a drive through for any reason.
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Hi Ruth,
I finally got to speak to my GP’s practice manager and she confirmed that my SNOMED code was correct for Chronic lymphocytic leukaemia (CLL) and that my records show I am high risk of complcations from Covid before NHS England sent out the letters. So even though mine were correct when the NHS England did their first run of emails/letters sent out to all immunosupressed mine was not picked up and I have not received a letter or a Priority PCR kit.
So not sure why they are missing people and whether it is the coding on our records or the algorithm NHS England are using to identify people that was incorrect.
Carole.
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Hi @Beebusy you put it so succinctly.
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Some good news at last. GP’s receptionist just called to say doctor has now coded Robin’s records correctly as being high risk with Chronic lymphocytic leukaemia (CLL); it’s amazing what happens when an MP’s office gets involved! His Assistant has achieved more in 2 days than we had in 2 weeks.
Receptionist seemed to think that Robin would now automatically get the letter/priority kit - but I don’t think that will happen! So we’ve emailed Gloria (the Assistant) to update her, but explained this is only half the battle - we still need to get one of these priority test kits, so could she stay on the case for us. Will let you know what happens ……
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Hi Everyone. I’m new to the forum. It’s lovely to “meet” you all. I’m following this thread about eligibility for new treatments and the designated barcoded PCR kit. I have indolent B cell lymphoma and was on the shielding list (I relapsed in 2020). Like some of you I haven’t received the letter or PCR kit. So far, my GP, consultant, 119 are unable to help. Some of you have mentioned that your GPs have managed to get you on the list. Do you happen to know how they did this? What was their method of communication? My GP is struggling to find out why I was missed and how to rectify it. The NHSE letter to GPs doesn’t provide any guidance on this and she is keen to help me, and others registered with them. Even if we don’t get the PCR kit……… we would at least hopefully receive any subsequent letters. I’ve written to my MP and asked for his support too. It’s all been so frustrating. It was.something I thought would be automatic and based on the previous shielding list, but seemingly not. BloodCancerUK have been really helpful and I can see they are taking this up with NHSE. But if you know the process your GP followed to add you to the list, it would be a great help. Thank you everyone. All the best to you all. Sue
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Hi @Hillssy I am so glad you have found us and that you are now part of our forum family.
I think one of the things that I have got out of this forum is realising I am not the only one and with this issue we are certainly not the only ones,
We know that Blood Cancer UK are definitely campaigning for us.
There also doesn’t appear to me one clear way to get our letter, priority PCR kit or 4th/booster vaccines as you have probably seen.
Others might be able to help more.
The main thing i have learnt is to look after yourself
I look forward to hearing more about you
Hi Erica 
. I really appreciate your response…and yes….it’s nice to belong to such a supportive group, it makes a big difference. I’m struggling at the moment - I went through chemo in 2020 and on 1st Dec that year I was told I was in remission. Hurray! But the celebration was short lived as they identified an unrelated condition on my CT scan. I’ve been in and out of hospital ever since and not exactly “enjoyed or relaxed into” my remission. But I do have lots to be thankful for….amazing family and friends and have found a new love for gardening……thanks to shielding 
. I can even name the shrubs in my garden now! I’ve also gone through several pairs of Skechers with all the walking I’ve been doing! And the other upside is that the awful commute to work is a distant memory. Don’t miss it one bit. I hope everyone else has found some positives from the negatives . Hopefully we’ll get some resolution to this latest “eligibility” issue. 
. Sending all my best.
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Yes, @Hillssy Sorry to hear about your medical issues.
I have also found positives from the negative situation we are in due to Covid.
I have also got through welly boots, walking boots and trainers from walking during isolating.
I have saved my gym membership money and now do my pilates from DVD’s at home in my own time.
I keep in contact with my wonderful family and friends virtually.
I realise all I need are Sainsburys and Amazon on line deliveries.
I am so grateful that we have this forum and Blood Cancer UK campaigning, informing and supporting us.
Look after yourself.