Erica: So glad you’ve got yours at last! You’ve been so supportive when we’ve all been moaning about not receiving them. Thank you.
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@Firefly, Thanks for updating us!
We are pleased to hear that you have received your test kit!
Over the past two months, people shared with us their experiences of not having been contacted by the NHS about accessing the new treatments if they test positive, and we collated their information and had conversations with NHS Digital (as they are the body responsible for providing the data used to contact people). They used this information to investigate what seemed to be going wrong. As a result of that work, they have identified an error affecting one code that meant some people with Chronic lymphocytic leukaemia (CLL) weren’t being sent the letters. This error has now been corrected, and these people with Chronic lymphocytic leukaemia (CLL) are starting to be contacted.
The priority PCR test is only needed if you have COVID symptoms so please use the test if this happens. If your test comes back positive, tell your doctor straight away.
You don’t need to have received a letter/email to be assessed for the treatments. If you test positive using a PCR test, your GP, specialist or 111 can refer you for an assessment if they believe you are eligible and someone will contact you within 24 hours for an assessment.
If you have any questions, our website has information about the processes that are followed in England, Scotland, Northern Ireland and Wales: Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK
Please do contact the Support Services team, should you have any questions or wish to talk any of this through: Blood cancer information and support by phone and email | Blood Cancer UK
Many Thanks, Lauran
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I feel that the vast majority of problems encountered by patients in trying to obtain treatments have been caused by Sajid Javid closing the original Shielded Patient List and replacing it with one produced by NHS Digital and derived from their data system.
A huge number of people who had previously been listed were not included, and as a result no longer received invitations to treatments that should have been applicable to them.
Gps were able to submit omissions for a short time, but no doubt due to the mountain of paperwork and other duties, many were not reinstated.
The Shielded Patient List Dashboard has not been updated since early October 2021. In
addition, the regular ‘Sweeps’ of GP’s and Consultants Coding inputs carried out by NHS Digital have not taken place since Dec.5th and are totally discontinued.
As a result of this, any Coding updates or corrections to a patients SNOMED CT code entered into surgery or hospital records will not be collected as previously by the regular NHS system sweeps.
NHS Digital say they do not have access to patients details, but that is hardly surprising since they have closed down the very system that collected them.
I think there should be a new Clinically Vulnerable Patients list set up, open for Coding submissions and updates from surgeries and hospitals.
Perhaps Blood Cancer UK could help on that?
Having said all that, for what it’s worth, the SNOMED CT code for Covid-19 High Risk patients is : 1300561000000107. For Medium Risk it is the same first 13 numbers followed by 100, and for Low risk it is the same first 13 numbers followed by 101.
Best of luck with getting that entered on National Data!
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In the document you link to (Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK) theres a dead link in the England section ’
Many people with blood cancer should be sent this letter about accessing the new treatments…’
Do you know where it’s gone?
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Not everyone that was on the shielded list was eligible for consideration for antibody treatment… So using the shielding list would never have worked anyway… The coding system is very complicated and I don’t think a lot of GPs have got the hang of it… Otherwise why would some Chronic lymphocytic leukaemia (CLL) patients have been picked up by the NHS digital sweep and others left off? With no reference to stage of treatment either
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Hi all first time posting but hope this sheds some light for you all my hubby was diagnosed middle of november 21 with mantle cell lymphoma 2 weeks ago tested positive for covid our cancer centre in stoke also received his results and his cancer nurse rung him to arrange for him to come in for the anti viral therapy because of his blood cancer he was in a special room set up for this where a nurse was the only one allowed in to give him the therapy through his picc line and monitor for any side effects after 2 hrs he was back home it is a worrying time for people with blood cancer getting covid but he has had hardly any side effects from covid which we can hopefully put down to the antiviral treatment my advice would be if you do contract covid speak to your cancer team and explain how worried you are and they can hopefully get this treatment sorted for you hope this helps anyone in the same situation we found ourselves in which was really worried Thanks Rena xx
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Hi @Rena a great big welcome and thanks for sharing your hubby’s experience of Covid and antiviral treatment, that is what our forum is all about.
I look forward to hearing more about you both.
Look after yourselves and celebrate the little things.
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Thanks for flagging @BobK99 I’ve mentioned it to Health info team who edit the site. Here’s the letter that was sent out, making people aware of the treatments
C1576_Patient-notification-letter-important-information-about-new-treatments-for-coronavirus-February-2022.pdf (england.nhs.uk)
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Hi @Rena,
Thank you so much for sharing your husbands’ recent experience. It really is lovely to have you on our forum. I do hope you also find it a useful space for peer to peer support.
I hope your husband has continued to keep well both with Covid & his treatment? That must have been such a worrying time for you both.
If at any point at all either you or your husband would like to access any support or indeed just to talk something through, please don’t hesitate to contact our support line- Blood cancer information and support by phone and email | Blood Cancer UK.
Do Take Care, Lauran
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I have just tested positive for Covid and after using the priority pcr test, I was impressed with the results.
I was interviewed by phone and booked in for Sotrovimab ( an infusion/drip of a neutralising monoclonal antibody) at a hospital 50 mins away by car.
My GP then contacted me to say they had been asked to supply an oxygen monitor on a two week loan. I collected that from my local health centre from the Covid drive in testing centre.
The infusion went very smoothly 30 mins to infuse but 2 1/2 hours overall.
Just by chance I had my 3 monthly consultant phone call yesterday but it was useful because she discussed everything and decided to take me off my chemo for 1-2 weeks to help me fight the chest pain and breathlessness I am experiencing. The monitor is helping me keep track of my oxygen level without feeling afraid because chest pain is a bit scary! It is hard otherwise to know if your oxygen levels are too low and you worry or equally to not notice how they are dropping. I would recommend anyone with blood cancer and Covid to ask their GP if a monitor can be organised for them.
I would also say that all the other blood cancer folk, all with Covid, having the infusion did not have chest pain or breathlessness and so I seem to have been a bit unlucky.
A bit of joined up action was so welcome and now I can keep an eye on my oxygen levels at home and await the magic of Sotrovimab!
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A little extra!! The post has just arrived with a new priority Pcr priority test to replace the one I have just used. How amazing is that!
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Oh @GrandmaJo I am so sorry that you have got Covid, but thanks so much for letting us know how the access to antivirals went and the oxygen monitor. It is so helpful.
The NHS really have got the system working well and it sounds as if it makes you feel cared for.
Covid can be nasty and long lasting so please look after and be kind to yourself you are so part of our forum family, please keep posting when you feel up to it xx
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Get well soon @GrandmaJo! And I hope that your husband @Rena is continuing well after his antiviral treatment.
Thank you both for the helpful information and advice which is reassuring (that some of the new treatment out there seems to be being provided ‘for real’) but also a warning that this pandemic is not over. Let’s hope that Sotrovimab does wonders for you @GrandmaJo
Keep (as) safe (as possible) everyone.
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Hi, I am so glad your husband is feeling better, you must have been so worried, it is such a lot of changes in such a small amount of time.
I was just wondering if you knew which antivirals he was given as my team are batting the idea around. I tested positive in December but am still testing positive due to being immunocompromised 
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Hope you’re better soon, @GrandmaJo.
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Hi
SUCCESS…!!! After much correspondence and hand-wringing I have finally, TODAY, got my (Dumfries) Haematology Department to concede that they were wrong and I AM eligible for the new pre-hospitalisation treatments. AND on the very same day I got a similar (but more fulsome) letter from Directorate for the Chief Medical Officer of the Scottish Government in which they said “I AM SORRY TO HEAR THAT SOME OF THE HEALTHCARE PROFESSIONALS YOU HAVE SPOKEN TO WERE UNAWARE OF THE NEW ACCESS ARRANGEMENTS FOR CIOVID-19 TREATMENTS”
This is the first time I have had anything in writing since the pandemic started and even had to argue with my GP Prtgice Manager to be put on the Shielding/High Risk list.
END OF MESSAGE >>>>>>>PERSISTENCE PAYS !!!
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BY THE WAY
accidentally came across reference on a Government website to “BE DISTANCE AWARE” badges and having paid for a supply was taken aback to see that our Library has just got a FREE supply,
Maybe I am living in such a tiny bubble that everyone else knows about these badges. but I am pointing it out as with the abandonment of all precautions I am sure that I cannot be the only one that feels even more vulnerable - and a badge can help…
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Gosh @UncleRoy your achievement really comes from your updating post, whoopee, persistence does pay, although we should not have to.
Thanks for the BE DISTANCE AWARE badges info.
A great big celebration is in order
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I managed to get one of the “Please stand back I’m shielding” badges at the beginning of the pandemic nearly 2 years ago. I wore it when I went for my first Covid vaccination, and unfortunately people had to come very close to me to be able to read it ! Defeated the object really 
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Yes, @Grannajan the badges were definitely not for the short sighted and defeated their object really.
As the vulnerable will be the only ones wearing masks soon I hope at least some people might distance from us !!!
Look after yourself.
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