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UK CML patients - COVID-19 - Advice from NHS/GP

Some patients seem to be worried that they have still not received a letter from the NHS via their GP, informing them that CML is included in the high risk category along with other cancers, Leukaemia as well as other conditions. 

If you read the links to the NHS and Gov.UK provided in the post pinned to the top of this page, it is stated that you may not get the letter until 29/02/20. The notification will be from the NHS via your GP Surgery.

After 29th March, if you are still worried that you have not received this notification from the NHS, you should then contact your GP surgery and not your hospital.

I have not yet received this notification either, but I am fully aware of the advice to isolate for 12 weeks.


Hi Sandy, spoke to my doctors (receptionist) less than an hour ago about the expected letters being sent out to high risk people during this dreadful time, and was informed it could be up to 5th April before you receive them. 

Hi, that does not surprise me given the strain the NHS as a whole is under! However, although I have not seen the contents of the NHS guidance for those with high risk conditions,  I understand what we are required to do... although as you probably know, I do not consider myself a at a higher risk than the normal population... but my daughter does not share that confidence and worries about me constantly!  So I do understand that not all people are the same, and I am sympathetic to those who may be worried. 

I am not sure of your specific response to TKI therapy, or your current PCR status, but if you are worried about anything or just want to express your concern, do not hesitate to let us know here on this forum.

Best wishes,



Hi Sandy, My only concern is, I presume it’s the same for everyone in the Uk with Cml, my appointments are every 12 weeks, and we used to get confirmation twice before the actual appointment, in the last 6 months we now get just 1, roughly 2 weeks before the actual appointment, but my last one in February I actually had to make myself as I only 1 week left of medication, I’m on 800mg a day Nilotinib and needed a new prescription, I wonder if due to pressures at the nhs if this might happen again, I also wonder how blood tests will be organised.

Hi Peter,

What is your current PCR % ratio- sorry if you have posted this before. Where are you being treated?

Have you to asked your clinic/pharmacy if you could have your TKI supply delivered to your home? Many others do this quite successfully.


Hi Sandy, today on the the subject of Covid-19 a professor came out with the line “ don’t listen to the noise, listen to the experts” and I’ve lived with that, in thought for the last 5 years whilst being treated at pinderfields hospital, I don’t put my head in the sand, but I have never got involved with facts or figures involving my condition, 5 years ago I started on immatinib but after 6 months was put on 800 mg of Nilotinib, which is what I’ve successfully been on since, I could find out my pcr%ratio on my next appointment, I’ve reached and been in MMR for over 3 years, but I prefer to not get involved with technicalities that would probably cause stress that I don’t need, especially now. 












Hi Peter,

If you know your are in MMR then no need for you to get into the details of that if you don't want to. It's a good place to be.