Hi,hope everyone is doing ok and he all managed to find joy over moments at Christmas
My dad has cll,on watch and wait for the past three years and touch wood readings are good. I’ve read about the monoclonal treatments being offered. I’m more of a be prepared person than he is,
Does anybody know how you go about getting treatment with these after a positive test please? We’re trying to balance the risks of him leading a normal (whatever that is now) life as him and my 4 year old are best friends and I hate to keep them apart but he’s the most precious person to me and of course I want to wrap him in cotton wool (which he hates!) he was always on watch and wait privately but his consultant retired last year so got passed over the Nottingham City hospital and has only had one apt at his yearly check up. I don’t know who we would call for the help if needed,he may not even take it but I would just like to be prepared and have a plan
Thankyou all so much for reading this most appreciated. Wishing you all a happy new year and let’s hope 2022 is brighter!
Abby
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Hi, in my view, I would start with the Nottingham City consultant’s nurse. Hopefully your Dad was given all those details. Email and ask the question that if one is on W&W are they eligible for monoclonal. If they don’t know a hospital near you which does give this think it was posted here a list of all the hospitals in the UK which do. I will try and look back. I think it came from New Dawn. I have these details now written down should such an event happen. This is only my view, but hope it helps. Good luck. So nice your dad has you behind him. Take care
Hi Abby, read my previous posts - hopefully that will help.
Your GP should be able to find out where your nearest CMDU unit is. It would be worth contacting them asap as it seems the GPs in general do not have a clue.
Someone posted a list of all CMDU units across the UK - sorry, don't remember the name. Hopefully someone else will respond with that info.
If your father has received the letter notifying him he’s been identified as a clinically vulnerable person who may qualify for monoclonal antibodies or anti virals, he would be contacted automatically within a 24 period following a positive PCR. It was held up for me due to Christmas but it does work.
I have asked my Gp practice about this and the practice manager had not even heard of the CMD units, and she told me to wait a while longer for letter, but I’m getting frustrated and impatient.😤
This is the letter from NHS England that was cascaded out to Trusts etc. explaining the process. All GP’s received notification of this protocol complete with spelling mistake of treatments (may have been in a different letter/memo however). It could be your name hasn’t been included or is simply in the next batch.
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Gamma globulins or monoclonal antibodies
Understanding CLL better just been diagnosed
Treatment Coverage Under Medicare
Have others heard from the government about being classed as vulnerable because they have CLL? 
London to Paris
