Hello UKBeardo, 

I can completely understand why you would want to know whether you are to be included in the vulnerable category and I hope that you can manage to get hold of your haematologist - perhaps you could try ringing the secretary and asking what the current advice is on this. I imagine you would not be the first patient with ET to ask. In fact, we have another member on our forum, [@Sonicboom]‍ who asked the same question on this thread  and one of our nurses will respond to it in the next few days. 

We have some useful information and resources on our website on coronavirus and cancer which you can access on this page.

Should you wish to give our nurses a call and asking them for advice or guidance on your situation, you are very welcome to do so on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm. 

I hope you find out more soon so that you know exactly what you should be doing in your particular circumstances. These are certainly no easy times, so I just wanted you to know that we're all here for you on the forum. 

Best wishes, 

Lucie, Cancer Chat Moderator

Hi UKBeardo. 

I also have ET and taking hydroxycarbamide and have asked the question not only to my doctor but to the nurse specialist at the hospital. I feel like I have got absolutely nowhere with them.

I have looked at the  Macmillon website and spoke to their very helpful nurses, who I can't thank enough, and also spoke to a lady at Bloodwise.org who was also very helpful. They all told me to sheild or at least take steps to self isolate. 

I have taken the steps to sheild myself as per the government guidelines. I think we are just under a cloud of uncertainty regarding us patients with ET.

Hope this is helpful.

Please stay safe.

To all the NHS and all the people who are working tirelessly for this country. 

Hi Lucie and Gundog,

thanks for taking the time to reply, I appreciate your time. I dropped my GP a line via e-consult and got the following reply which I thought I’d share for your info.

“Thanks for using econsult. Bear with us - the 'very high risk' groups were only announced at the start of the week. The letters were being generated automatically by the NHS based on central records but clearly these don't catch everybody, and primary care is currently still working on setting up searches for those who have slipped through the net. 

I would say on revieiwing your record, given that you are on hydroxycarbamide and have had previous intensive care admissions and given your other medical conditions you do count as being in the extremely vulnerable group and would be somebody who should have received a letter.”

I’m not too concerned about the letter, I kinda know what I should be doing to stay safe, but wanted to know one way or the other...

Anyway stay safe guys.

x

Hi UKBeardo, 

Thank you for getting back to us, if I hear anything from my end I will be sure to post as soon as I hear anything.

Stay safe and well all.