I am in exactly the same situation; Chronic lymphocytic leukaemia (CLL) (watch and wait). Was on all the previous CEV notifications and emails but now seem to have dropped off the list.
Emailed GP but he says he has no input or access to the centrally generated list.
Rang Haematology support at hospital (where I am not well known due watch and wait) and although nurse had heard some talk of this new antiviral at home scheme it clearly had not been disseminated down to all staff. (reminiscent of the 3rd primary dose Issue) Hospital asked for email from me explaining what I know and what I am asking (to be put on the list) and have said they will investigate.
Would be interested to hear of anyone else in the same situation cracking this conundrum. Suspect it won’t be resolved quickly.
Incidentally my wife is on the list for a different condition and her test kit is on the way. So at least we will have one in the house for whoever contracts Covid first!
(and yes; have checked spam folder)
Yes, the response from Haematology department here was exactly the same so I forwarded the email my husband got so they had something to go on. But I don’t feel very optimistic about them getting anywhere with tracking down who to contact to get us back on the list.
By the way, my husband got his PCR kit and it can only be used by the recipient and no one else because it is linked to his NHS number and has a priority test kit code too. So only your wife will be able to use it.
My husband is W&W for Chronic lymphocytic leukaemia (CLL); he has received all the other letters and emails over last 20 months - but nothing yet on this treatment. The list clearly indicates everyone with Chronic lymphocytic leukaemia (CLL) is eligible. I wonder if it’s just a lengthy process sending these out? It does say to ring 119 if not received by 10th January so maybe I’m being impatient?
Hi @Beebusy a great big welcome I will copy your post to @BloodCancerUK-SupportTeam @Alice_BloodCancerUK in case they can help.
I expect that you realise that this is another issue ‘Covid’ is that brings confusion.
You are in the right place place and I look forward to hearing more from you.
The main thing is that you really look after yourself.
Sounds like there are a few of us in exactly the same boat! I have a call with my GP next week; I suspect the outcome will be the same as yours Beebusy, but I will let you know if I get anywhere. So disappointing isn’t it. Fingers crossed we aren’t entirely forgotten and they just haven’t sent our letters quite yet.
Thank you @Erica Let’s hope we can all have a safe and Happy Christmas and that things improve in the New Year.
Thanks for the info about the coded test kit. And here was me hoping I could just invoke our marriage vows…!
Hi @Beebusy, the updated information regarding the nMAB and anti-viral treatments is here Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK and we are told that the letters were only sent out this week so may not yet have arrived for all eligible patients. We have been told that letters and tests should be out by the 10/01/2022 and that if this does not happen please contact your treatment teams. If you do develop symptoms and you do not have the letter/testing kit please get a PCR test done as soon as possible and if it is positive then call your treatment team (call 111 if you are unable to speak to the treatment team). I do hope this helps. Kind regards Gemma
Thanks Gemma, that is helpful.
I am being a little dense here but does ‘treatment teams’ mean your hospital Haematology team and GP as I am on watch and wait at the moment.
Like others, I received an email last week ref. PCR test to keep at home with link to NHS website posted earlier by @ellis Treatments for coronavirus (COVID-19) - NHS
Didn’t hold my breath for anything more, but the registered test arrived today! Boxing Day and a Sunday - so maybe we’re all back on the right lists - Merry Christmas everyone!!
Yes my PCR test pack got delivered today as well, a Boxing Day surprise 
That’s the same experience I have had… And knowing several other people who are severely immunocompromised who have heard from NHS already including a grey packaged PCR test to keep by them just in case does not reinforce confidence… Neither my gp or my hematology team know how to put eligible people forward… Bristol health authority have a very good guide of the protocol for GPS and consultants plus patients which is up and live. Plus designated distribution units… Somerset where I live have nothing at all bar the intention to do something… The government site says everyone that is eligible will hear by the 10th Jan but I’m not holding my breath goi g on past delivery sadly
This is a link to the Bristol and South Gloucestershire area NHS pathway ie gp, consultant and patient protocol for the severely immunocompromised. Thought people might find it useful
https://remedy.bnssgccg.nhs.uk/covid-19/covid-medicine-delivery-unit-cmdu/
It is odd isn’t it… I just hope it’s not because decisions have already been made that Chronic lymphocytic leukaemia (CLL) patients are unlikely to get antibody treatment since a decision will be made person by person if and when we get sick it might well be easy to just let us go…
Hi there @Beebusy, sorry for not being clearer. Treatment team should be whoever is primarily managing your disease, GP or Heamatology team. If you have contacts for both then contact both to ensure that your condition is assessed appropriately. Take care Gemma
Thank you for the clarification.
Let’s hope 2022 will be a better year for everyone.
I received the NHS letter dated 14th December advising about antvirals. No PCR test kit yet and in the meantime I tested positive. I waited the 24 hours to be contacted by NHS and, hearing nothing, as the letter advised contacted my GP. They had no awareness of this treatment (similar response to 3rd vaccine) , asked me several questions and thats the last Ive heard. I guess now I have gone past my sell by date.
As the scheme was only triggered by confirmation by PCR and by that time the limit of treatment may well be exceeded (out of the patients control) it seems like just another well intentioned initiative not properly thought through.
I wonder what percentage of patients were successful in securing treatment ?
Hi @KBull oh, dear.
How are you doing and feeling?
Take lots of special care of yourself.
Yes, has anyone been successful in securing treatment our there???