Please be assured @caz, that as someone with ET and on Hydroxycarbamide, you would be eligible to be referred for an assessment by a CMDU should you test positive. We would encourage you to get in touch with your GP and/or treatment team to discuss the plan for if you did test positive as this may offer you some reassurance and guidance. You may find our webpage on accessing treatments useful in your conversations - Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK. MPN Voice have some info around this too, here - Fast access to COVID medicines for people with blood cancer ā MPN Voice.
We are feeding back to NHS England the difficulties some people with MPNs are facing when trying to access Covid treatments, as we are keen to support the NHS in making this process as efficient as possible for our community. If you want to talk things through over the phone with us, at any point, please donāt hesitate to give us a shout!
I like your philosophy @heatherthomas.
Yes, you keep your specs off.
Ah glad you are ok, @heatherthomas. Iām the same with my eyesight. On the rare occasions I wear my glasses in the bathroom, I invariably have a Filth Faint. And am a bit startled to see myself properly. Best leave those glasses downstairs, I find.
The shutters seem to have come down. Iāve never before had any trrouble otdering test kits at Order coronavirus (COVID-19) rapid lateral flow tests - GOV.UK , but now I get the attached error:
Itās OK for the time being, as I have a backlog to fall back on. But itās not very reassuring.
Hi @BobK99 I havenāt tried to order any this week, thanks for the heads up although concerning, I await others experiences
I have LGL leukaemia I ordered a pack this morning no problem .
Hi @BobK99 and @geri147 my husband got the post in yesterday and called out to me and said have you ordered another Covid test kit so I said ānoā but thought no more of it as an unsolicited kit had arrived a few weeks back.
As I went to put the box away luckily I realised the box was a smaller size and looked closer at it and it was my bowel testing kit in the familiar blue and white box !!!
Hi @BobK99 . I have just ordered another box to see how it works. You need to click the box saying you qualify for covid treatments and then a few others questions pop up saying the same thing that you need to say apply. Then it lets you order them. You need to read it carefully as i clicked the wrong box first and it said i couldnāt have any but went back and re read them to correct my answer.
Hope that helps.
This doesnāt appear for me 
@BobK99, Iāve had the same response when trying to order LFT this week, but had no problems last week. Itās not something Iām doing wrong on the order pages - am familiar with how to order. I think I at least have been deemed no longer eligible. Not great news.
Hi @Chrispy
I used to see all of that, but now the āyouāve got a health condition which means you are eligibleā¦ā part doesnāt come up. Iām obviously no longer eligible, and it may be the same for @BobK99. Iām just over a year post-transplant now (for Acute Myeloid Leukaemia) which seems to be the factor cutting me off from LFTs and antivirals/antibodies.
Mmmm all very strange for those of you not getting anywhere - I have just tried and ordered some no trouble - perhaps someone at BCUK can help later in the week as I thought all blood cancers were eligible for free testing - very upsetting for you all
Yes - quite disturbing. Coincidentally (or not) I had an invitation to bookmy Spring Booster withdrawn:
Iām beginning to think someone on the NHS site has blackballed meš¤„
@Fullofbeans @BobK99 does the health condition question come up if you click yes to this question?
Why do you need a test?
Youāve been asked to take a test by a doctor or healthcare professional, or youāre eligible for COVID-19 treatments, or youāre being admitted into hospital
Bizarrely I didnāt need to order some, they were sent to me automatically. The first bit of efficiency Iāve experienced in the NHS in four long years of treatment and appointments. Iām open-mouthed at your experiences @heatherthomas . Even by my experiences thatās lousy. I do have to sigh sometimes and think why does everything have to be made so difficult for us when weāve already got so much to deal with.
Thanks Alice -thĆ t did it. I didnāt read to the very end of that terrible and/or/but sentence. (As a one-time technical writing professional I should be better at deciphering this stuff!)
Thanks againš
The health condition question wasnāt coming up at all for some reason. However, Iāve tried it again tonight and it did - so Iāve managed to order some. I donāt know why it wasnāt coming up the other day - maybe just a blip in the system. So thanks for prompting me to try again - I had assumed I was deemed no longer eligible (as that matches my status with the antivirals) and so I wasnāt going to try with the LFTs again.
Itās silly, but I feel a bit safer having a few daysā worth of lateral flow tests. A bit of a safety net of sorts - at least I wonāt have to ask people to go to the chemist for me if I suspect I have covid. Thatās one of the problems with cancer - having to ask people for help, when youāre naturally inclined not to bother people for favours. I hate that part!
Thanks again.
It would be good to know if those with an MPN and who are on treatment are able to order free LFTs from the government website? If any of you could let us know that would be very much appreciated.
Hi Alice I have a MPN and am on treatment and I have been able to order free LFT from the govt website several times since the free for all stopped and have been pleased itās been easy to do so