Sorry to mention the dreaded S word as there seems to be so much back and forth about whi should and shouldnt, but can I ask please have the rules changed re CML patients do we now not have to shield? Have the NHS. Taken CML off the list?
Only asking because I have read a few posts on other forums saying CML no longer on list?
Stay safe & take care everyone
Hi tricky109,
Only yesterday I received text message from NHS Coronavirus service informing me I had been identified as someone of high risk and I would be receiving a letter (again) to confirm this, and the government advises you to shield at home till the 30th of June, unless advised differently by a health care professional. In this current situation I am going to obey that text to the letter.
stay safe Peter.
The short answer is no, it's still on the list and the difference between the opinions of the CML experts and that NHS advice remains. The expert groups' guidance - which discusses CML patients in different situations - is of course in the pinned post at the top of the forum. I don't understand that to have changed either. I know CML is still on the NHS shielding list because despite not receiving a letter I have been called by the Shielding Hotline in the last 10 days, mainly to see if I need anything.
The NHS position is a catch all because they can't assess every leukaemia patient and decide whether there is in fact any additional risk, whereas the CML clinicians have carried out an assessment for CML. So I think this means making a personal assessment and/or speaking to your CML clinician. In my case, being in TFR for 5 years and zero by PCR for more than 10, bloods all normal, shielding does not seem to be relevant. However, I know I am at the extreme end of good responders and others are in a different position. My consultant clearly doesn't think I need to shield as I have been reminded to go to the hospital next week for my 4 monthly check, although they are only going to take blood there. The consultation will be by phone, which means I will be in the hospital for a very short time.
Public Health England's view is that people with blood cancer are more vulnerable, and that's the end of it as far as they're concerned. That's the official line.
Here's a video that was done on Facebook Live a week or so ago which is worth a watch. Steve is a very well respected clinician, and responsible for a large amount of CML research in the UK in the last few years so he's worth listening to.
https://www.youtube.com/watch?v=kCN3IJhy-Ck
Thanks for sharing that link. I was really interesting and very down to earth. Explaining alot of questions we all have.
Bottom line is PHE say shield for 12 weeks and after that we will need to make our own decisions based on all the information available and each persons personal needs and circumstances. We should all have the letter according to the link and PHE is the overriding advice. NCRI report writers also agree we should shield on the basis that we do not know what will happen.
Recommend everyone on hear listens to the link.
Just watched the video David recommended and as far as I’m concerned the thoughts of professor Steve o Brian nailed the questions of shielding, should I, shouldn’t i, like Steve says he’s being involved in Cml for more years than he cares to remember, he’s an expert, no one is an expert in covid 19, too many unanswered questions and as he said, if he had Cml he would shield for the 3 months, no doubts, don’t listen to the noise, listen to the experts. Again thank you David Fitz.
Peter.
Thank you for your replies, can I add to my question? Im shielding until safe 100% what are your opinions on as I have 2 young primary age children when the goverment announce tonight schools reopening on 1st June, what are your thoughts on my/our situation, safe or not safe to send children back while we are shielding?
Thank you again.
Tricky one ... but it will never be 100% safe, so you need to work out your own risk tolerance.
My kids aren't school-age yet, but if the question to me was would I send them to nursery on the 1st of June my answer would be "no". But that's down to my personal risk tolerance, which is quite low at the moment. Not much is known about COVID-19 really, less so in combination with CML so I'd rather be risk averse and perhaps ultimately wrong in that approach, than gung-ho and cause problems for me and my family.
David.
