I have been told by several sources including the local CDMU chief this afternoon. He rang in response to an email I sent this morning so swiftly… That it’s completely down to the code that was on our gp notes at the beginning of December There is not going to be another computer sweep so no point in gp putting the appropriate coding now for the antibody treatment. He also said that our diagnosis is enough to get us considered for Mab treatment and referral to CDMU can be made electronically by gp once we have a +ve PCR test. He suggested getting an ordinary PCR test pre registered from 119 and keeping it by you. Also to do a lateral flow test ASAP once you get symptoms and then if the PCR test is too late they will take referral for treatment on +ve lateral flow test. And I believed him… 
Unlike a lot of the ‘made up on the spur of the moment answers’ I’ve had from various sources!
I can understand that they don’t want to do another sweep of the records - although the mistake is on the NHS so they should be putting this right - but I really don’t think it’s too much to ask to let all the missed people have priority PCRs! Hopefully BCUK will keep up the pressure on this?
Just been trawling around again for info. ‘just in case’ . . . found two links that may be helpful.
If anyone needs to find their local CDMU (unit tasked with getting the treatment sorted) the list of all centres is here https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2021/12/cmdu-directory-v2.1.pdf
Also, the ‘Covid Pathway’ - seems so tortuous it’s maybe why people don’t know what’s going on!
https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2021/12/C1479-covid-19-treatment-pathway.pdf
Just like everything else, it’s all made so much more complicated than it needs to be!
However, the positive is that at least there are treatments out there now, fantastic work by those ‘behind the scenes’ in such a short timeframe - also big thankyou to BCUK for support and campaigning help.
My husband had a telephone conversation with GP this morning; he seemed to think that now the coding was correct that solved the matter! Anyway, he agreed that they would refer him to local CMDU on the basis of a positive lateral flow test if necessary - although he couldn’t guarantee what their response would be. At least it’s something …
Our MPs office have come back to us; apparently our surgery has told her that “NHS Digital regularly updates the shielding list so your information will now be available”. She then asked if my husband has been able to access the priority PCR yet - the answer to which is no!
We responded and said we didn’t think that was correct, as multiple sources have said the list is now closed and no further letters are being sent out. She came straight back and said: “That was indeed to be the case but it (shielding list) has now been extended to 31 March, so the information is correct. This was confirmed by the House of Commons Library Specialist.” She also attached something I had never seen before - I will try and attach the link here:
This document does indeed seem to say that the shielding list has been extended until 31st March.
This seems to contradict what so many people have been told; there was a webinar Q&A on Health Unlocked Chronic lymphocytic leukaemia (CLL) recently where Prof Adrian Bloor said categorically that the procedure is now closed and further letters will not be sent out. So I’m totally baffled with it all! Can BCUK shed any light on this?
(Meanwhile MPs office still trying to get a Priority PCR test sent to my husband.)
I think the shielded list is different to the sweep that NHS England did to capture all the High Risk patients. I received all the Shielding information when it came out up to the ‘End of Shielding’ letter. But despite having the right codings on my GP notes I have not received the Eligibility letter or Priority PCR kit.
So I think NHS Digital must be talking about a different list, don’t you think?
I have no idea! Does anybody really understand this mess?!
My MPs office clearly thinks that’s the problem of the list solved, so she’s probably put a tick in that box - although she is still on the case re a priority PCR. I did try to tell her I didn’t think this was correct - but she wasn’t having it!
I will copy your post to @Alice_BloodCancerUK @BloodCancerUK
Look after yourselves
Hi @Ruth it’s really good to hear your husband spoke with his GP and came up with a plan for if he did test positive, I hope you’re both feeling a bit more reassured during what I imagine has been a frustrating time for you both!
We are in conversations with the NHS, including with Peter Johnson, the NHS England Clinical Director for Cancer, in order to highlight the concerns that many of our community have around not having received a letter and priority PCR test and accessing these treatments, despite their eligibility. We want to ensure that immunocompromised people who are eligible for assessment by a CMDU, are assessed for treatments as quickly and efficiently as possible after a positive test, whether they received a letter/priority PCR or not.
What’s really important is if your husband tests positive, he contacts his GP/haematology team/111 straight away, so that he can be referred for an assessment by a CMDU, as it explains more about here.
We’re only a phone call or an email away if you or your husband wants to talk this through.
Sadly you’re right it is too late to be added to the NHSE database for automatic referral on a +ve PCR test but at least your gp is wised up now and will refer you to CDMU if you get Covid… A good step in the right direction I would say
Saw the attached on another site. It appears that positive LFT will be accepted from 10th Feb - but they’ve added a requirement re symptoms.
Hi @UncleRoy how are you getting on now in Scotland, are you still chasing your tail between your Health Board to Haematology Dept to GP?
I have today received a priority PCR test! So they must still be working through the list
@Gwenda brilliant news and I think a celebration is due, look after yourself
Today is turning into a good one: first, husband got the booster - then a priority PCR turned up in the post. I initially thought it was thanks to our MP’s office who had been in contact with HSA - but maybe not. Whatever or whoever triggered it, it’s such a relief!
Further to my post of 21 Dec delighted to say that my priority PCR - in common with many other folk - arrived yesterday.
Blood Cancer UK (thanks Gemma) had forwarded my name to NHS Digital so that could have been the trigger. But equally I was pleased that when I went for my 4th jab (arranged in a timely way by my GP Surgery) the vaccination staff checked whether I had my priority PCR test at home. I said I had not despite GP, 119 and Hospital dept routes. They said they would make sure my surgery admin team knew and would ask them to follow up. So maybe it was that or a combination. In any case its good to have the extra safety net in place.
I have my letter today - very pleasantly surprised, as things have been a bit uphill on the paperwork up until now,
Things are definitely on the up!
Hello everyone, hope you’re all ok. I got an email today and a PCR kit in the post yesterday, out of the blue - guessing I have @GemmaBloodCancerUK and the amazing team at Blood Cancer UK to thank for this?! Absolutely life changing, now feeling like I might start venturing out into the world again after nearly 2 years! So very grateful to this amazing charity.
Thank you,
Firefly
Hi @Firefly yes, so did I and I am also so grateful to Blood Cancer UK.
Look after yourself