Thanks, Alice. Very useful to read the info that has been sent to GPs and the info on Blood Cancer website.
Should I try 119 again or wait to see what further info you get? Presumably I am in NHS England’s database as I have received every other communication and have also had a letter from hospital Consultant who is looking after the immunocompromised during Covid (no contact details at all on that letter or would ask him!)
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Hi @Adrian please let us know if you receive the right PCR kit.
What unneeded stress, anxiety and fatigue this is causing us all. I would like to keep calmer this year and use my limited energy on things I enjoy !!!
Look after yourself
Thanks Alice,
Having read the full breakdown on the link you provide from the other webpage, I can see many Watch & Wait would NOT qualify for the letter and priority PCR (me included, since I have an MPN but am in Watch & Wait (so haven’t had systemic anti cancer treatment in the last 12 months). So that explains it anyway, although it still feels very worrying not to be included!
If it helps others, here’s the direct link to the page that breaks down the qualifying conditions/treatments below: https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2021/12/C1530_Interim-clinical-commissioning-policy-neutralising-monoclonal-antibodies-or-antivirals-for-non-hospitali.pdf
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Hi @Chapsticks thanks for sharing this. As of 24 December 2021, the following people with blood cancer should have a telephone assessment by a CMDU if their PCR test is positive. People who:
- have any type of blood cancer (including chronic blood cancers, MPN and Myelodysplastic syndrome (Myelodysplastic syndrome (MDS))) and have had anti-cancer treatment within the last 12 months - except people with CML who are in the chronic phase and in molecular response, or on first or second line TKI treatment.
- had a stem cell transplant in the last 12 months (allo or auto)
- have active graft vs host disease (Graft-versus-host-disease) regardless of how long ago the transplant was
- had CAR-T therapy in the last 24 months
- had radiotherapy in the last 6 months
- anyone else with Myelodysplastic syndrome (Myelodysplastic syndrome (MDS)), myeloma, or a chronic B-cell lymphoproliferative disorder not otherwise described above (eg Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL)), hairy cell leukaemia, follicular lymphoma, SLL, marginal zone lymphomas, MALT lymphoma, Waldenström macroglobulinaemia)
It’s totally understandable that it’s concerning to not be included @Chapsticks because you aren’t on treatment for MPN. Please do give us a call if you want to talk things through. You may also want to read through the below which is also taken from this webpage - Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK
I have a condition that’s not mentioned in the list above - am I eligible?
An Independent Advisory Group of clinical experts have fed into the Deputy CMO to compile the list of condition types and treatments that identify the people who would most benefit from these new treatments, given their higher level of risk. There are some people that might not be eligible for an assessment by a CMDU for these new covid treatments, according to the list above.
This includes:
- people with CML who are in the chronic phase and in molecular response, or who are on first or second line TKI treatment
- people who have CML, CMML, MPN, LGLL (or any other blood cancer that does not affect B cells) AND who have not had any anti-cancer treatment in the last 12 months (aspirin doesn’t count as a cancer treatment), no CAR-T therapy in the last 24 months, and no active graft vs host disease (Graft-versus-host-disease)
The list of eligible conditions is under constant review with experts (we are also influencing by sharing our vaccine research) so it’s possible the list could be expanded again, as it already has been once.
If you are not eligible, if you get covid symptoms, take a PCR test as soon as possible. If your PCR test comes back positive, tell your doctor straight away and ask whether you may still be eligible for direct access to treatments.
If you are told you are not eligible for new treatments
Not everyone with blood cancer will be eligible for the new treatments, even after a telephone consultation. In this case, you could think about joining the PANORAMIC trial. This trial gives you a 1 in 2 chance of getting molnupiravir (half the people on the trial get molnupiravir and half don’t).
You can sign up to the PANORAMIC trial yourself if you have covid symptoms, a positive PCR test, and you are aged 50 or over, or 18 to 49 with an underlying condition.
Sorry for the long post @Chapsticks but I hope it’s helpful!
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So it looks as though anyone with Chronic lymphocytic leukaemia (CLL) should be included to be assessed if positive for COVID, even if on W&W. Are there others like me who haven’t received the letter?
Thanks
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Yes I am the same as you. W&W and no letter. I spoke to my hospital team and GP practice.
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You are not alone; my husband is the same - and there seem to be many others!
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Yes that’s right @Gwenda. We are working hard to clarify what the reason is behind eligible people not receiving the letter, and what the next steps will be. Hope you’re all doing okay.
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Thanks @Alice_BloodCancerUK - everything you’ve supplied is so helpful! I guess I’ll just have to continue to stay as safe as I can & hope they expand the list of eligible conditions again soon (or as you say sign up to the PANORAMIC trial if it comes to it and keep fingers crossed). Especially with Omicron being so much more transmissible, I’m feeling very vulnerable about queuing up for my 4th dose as it is. Anyway thanks for all you do to raise this with the relevant bodies and to keep pressing - it’s a genuine lifeline!
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If it’s any use @Chapsticks my personal experience has been that my hospital and GP’s have their Covid procedures in place and my appointments have felt very safe.
Please let us know how you get on and look after yourself
Thanks @Erica - I think I’ve just had some dodgy experiences lol, I had to queue for 2&half hrs for my 3rd dose and for most of that time many people in the queue weren’t wearing masks or distancing, and in the waiting room for a hospital appointment two people weren’t wearing their masks properly and one took hers off to have a phone chat! I tend to freeze & go quiet so I’m working on trying to speak up. I’ve ordered an “I’m shielding, please give me space” badge this morning and a face shield to go over my mask since I’m worried how much vaccine efficacy will have waned by the time of booster (I’m running late as my GP wouldn’t look at the info about MPNs at first) and also about how much more widespread & transmissible Omicron is. Hopefully it’ll be fine, it feels like about as much as I can do anyway!!
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Hi My sister has Chronic lymphocytic leukaemia (CLL) (W&W). She has not received a letter or PCR kit either. I have found out that the COVID treatment letters are being sent to people identified automatically by ‘clinical coding’. I work in the NHS and have found that the coding for Chronic lymphoid leukaemia, disease (which is what appears on my sister’s medical record) is NOT on the digital clinical coding list being used to identify people eligible for COVID treatment for some reason. It really should be and I have written to NHS England and NHS digital to see if I can find out more information. I will let you know what happens
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Hi @Helen454 a great big welcome and it must be so useful to have a sister in the NHS.
Yes I think it is all down to coding, please let us know what answers you get.
What is it like being a sister, with medical knowledge, of a person with Chronic lymphocytic leukaemia (CLL)?
Look after yourselves.
A great big welcome. It’s really great that you were able to pick up on this and make the NHS aware. It really could ease the stress for a lot of people.
How is your sister (and you) doing at the moment.
Please keep us updated on how you get on. I’m really interested to hear there response. Fingers crossed it has an impact 
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Hi @Helen454, thank you so much for the message. I believe my colleagues are going to respond to your email and will pass these important documents on. Kind regards Gemma
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Good to see BBC News giving this debacle some publicity today; an article on their website featured a lady with Chronic lymphocytic leukaemia (CLL) who hasn’t received the letter/PCR - plus an ineligible couple who did! Apparently, the UKHSA, who are responsible for sending out these tests said “We are ensuring that everyone eligible receives a PCR test kit as soon as possible”. Well I don’t think we’ll be holding our breath.
Meanwhile, we’ve been sitting here for a month, smugly thinking my husband had his 4th (booster jab) all booked at our local surgery. He had his third jab on 30th October so, when I saw the surgery were running daily clinics during January we emailed and asked if they could book him in for Monday 31st Jan (ie 3 months and 1 day after his third dose). The Practice Manager came back and said she’d booked him in for the clinic on 28th (this morning). Of course, when he got there they said …“sorry, computer says no because you’re two days early - and, by the way, we’re not doing them after today so you’ll have to have it somewhere else”. What annoys me is their inability to think outside the box. Here’s a suggestion: why not give him the jab, write his details on a piece of paper and then put them in the system on Monday morning? But then again, that would be like posting priority kits to all those people who have been missed - far too much like commonsense!
Fortunately a local surgery has become a vaccine hub and, when I explained the situation to them, they told him to come along on Monday morning. So on Monday he’s going down there, armed with letter from haematologist saying he needed third & fourth boosters. Fingers crossed for a better outcome.
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Hi @Ruth yes, what a debacle, please let us know how your husband gets on on Sunday.
Look after yourselves
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