Blood cancer uk explain why some CLLers are finally getting priority PCR tests

[Bartlet]

❗📢 Recently, the NHS wrote to people who were eligible to be assessed for whether they qualify for new treatments if they contracted Covid. In England, these people were sent a priority PCR test

📞 But we heard from lots of people with blood cancer, on our support line and via a survey, who told us they thought they should have received a letter but hadn’t. There seemed to be a particular problem with people with chronic lymphocytic leukaemia (CLL), which was worrying because everyone with CLL should be eligible to be considered for the new treatments.

💬 As people shared their experiences (and thank you to everyone who did so!), we collated their information and had conversations with NHS Digital, as they are the body responsible for providing the data used to send the letters. 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 CLL weren’t being sent the letters. This error has now been corrected, and these people with CLL have started getting letters and priority PCR tests.

📅 This mistake has resulted in the last month being a stressful time for some people with CLL. But we understand that human error sometimes happens with new policies like this, and we are very grateful to NHS Digital for listening to people with blood cancer, for investigating and fixing the problem and they sincerely apologise to all those affected. We think this error has only happened in England.

🤗 We want to say a massive thank you to our community for taking the time to call or fill in our survey, and particularly to those who agreed for us to share their NHS numbers with NHS Digital to help their investigation. By helping them get to a fix more quickly, you may have literally saved lives.

💊 We have also heard about other people with blood cancer not being sent the letters, and are continuing to work with NHS Digital and their colleagues at NHS England to look into why this is. If you think you are eligible for the treatments and have not received a letter about it, please do let us know so we can continue to tell the NHS about any patterns in the people now getting letters. It’s vital that every eligible person can access the new treatments if they contract Covid.

🦠 Anyone newly diagnosed with CLL should have a letter sent from their consultant which will tell them what to do if they test positive for coronavirus. If you have been diagnosed in the last few weeks and have not received a letter then please speak to your consultant.

You can email [e-mail] or call us on 0808 2080 888. Thank you!

Source: Blood Cancer UK Facebook Page

facebook.com/bloodcanceruk....

[Belfastbees]

Thats a great update. I'm not sure that the claim its only happened in England is accurate. I am in NI and have not received anything unsolicited. I have only recently been sent a letter enabling me to get an additional 4th vaccine. My booster was given on 1/11. I had to contact my haematologist several times to get that letter, and was passed around somewhat.

The absence of a priority PCR test kit further suggests I'm missed, but it is possible this recent interaction with my team will flush that out, but I dont have much faith in that.

I am fairly certain there are other W+W who have received these kits.

[CguLLer]

Thanks for posting this. It explains why many of us received their priority PCRs over the last few days. It is interesting that most of us assumed the reason we had not been picked up previously was that we were incorrectly coded in the system. From what they have now said it appears this might not be the case but was an error in picking up the code from the database.

It is a shame this happened and caused so much anxiety to so many but a least it has been fixed and an apology given.

It does still leave those not coded correctly and who have still not been included. Let’s hope there is renewed focus on getting these cases sorted.

David

[mrsjsmith in reply to CguLLer]

David,

As I understand the error was with NHS Digital and a code. This incorrect coding also occurred when many of use tried to get antibody testing and being sent incorrect codes.

This is all down to the hard work of all those involved in the various blood cancer charities.

Regards

Colette

[Mtk1]

Well hopefully I get mine soon, as I think I would qualify, I have done survey as suggested, I have contacted 119, my Gp and my consultant, all they ever seem to do is pass you on to the others, it’s a merrygoround with out the merry part.

[Harvist]

Useful info but...... I had applied for a standard PCR test and got it sent a few weeks ago as recommended by many on here. When the new priority PCR arrived yesterday the package had no indication on the outside that it was a fifferent "priority" one. I put it on top of the previously received test.

It was only reading posts on here that made me check the new parcel. Inside the red labels and packaging made it clear this was a priority test.

And I haven't received an accompanying letter or email.

Once again this forum has shown its value to us all.

[AutumnJ in reply to Harvist]

Just to say that I received my kit on Mon and the email arrived this am 👍

[Harvist in reply to AutumnJ]

My email arrived today too.

[IWVC]

Thanks for the update which explains a few things. I received my priority PCR kit on monday and the letter (actually an email) this morning. Beginning to feel that I was wanted after all now 😀

[Fran57]

Thanks again to everyone fighting on behalf of blood cancer patients .Fran 💕

[Annie1920]

I still wonder why some CLL patients were picked up and others not.. It seems there was no correlation between how long ago the diagnosis was or whether having or had treatment