Covid Cancer Survey

[azaelea]

Don’t know if it has been publicised or not, but on a face to face appointment with my Haematologist last week, she said that the Government were carrying out a survey to see how vaccines were working ( or not) after vaccine doses in cancer patients ( blood included). She gave me the link to send for a test kit which is done at home and posted which is covid cancer survey.uk I received my kit today after only a few days and will do it tomorrow. Thought I would just mention it. When you go on to register you must click the option which asks if it is part of a survey. Regards Fran

[jillydabrat]

Got really excited to see if my booster had given me antibodies then it came to the question asking to confirm I was not on anticoagulants so I had to withdraw from the survey because I am on lifelong warfarin 🙁

[Ebot]

I registered and was ‘approved’ but then when I tried to get the actual kit the system refused and referred me to 119(?) the Covid vaccine / testing customer service helpline. Guess what? They had no idea about any research / sending antibody tests. Spent an hour on the phone going higher up the ladder. All very helpful but clueless. And then the phone went dead. (Bit like trying to find out about the third primary vaccine.)

[azaelea in reply to Ebot]

Sorry to hear this Ebot. I came to a standstill the first time and I emailed the Helpline and they told me to make sure I clicked the option at the beginning that asks if it is part of a survey, which I did and got it sorted straight away. Hope you get through ok, or maybe you’re not going to bother.😃😃

[Ebot in reply to azaelea]

Yes. I clicked on the survey. And explained numerous times on phone. I have to admit I didn’t bother attempting again (I tried but was basically told to get lost online!).

[azaelea in reply to Ebot]

Oh dear! Not good! We’re messed about so much we give up in the end! We’re just trying to look after ourselves and fellow blood sufferers .

[Aldebaran25]

Thank you for pointing this out, I did not know this was on-going. The link you included in your post did not seem to work so I went searching and this is the link I found (National COVID Cancer Antibody Survey) covidcancersurvey.uk/. I have now registered and am waiting for the invitation. All the best

[azaelea in reply to Aldebaran25]

Sorry about the link! I’m not very au faithful with how to put a link and such things on here. Glad you managed to register in the end. I have just done my test today and sent it off. Fran

[Aldebaran25 in reply to azaelea]

No problem Fran! once I knew what to look for, thanks to you, it was easy to find. I am now waiting for the kit , thanks again

[EleanorPV in reply to Aldebaran25]

More information. You need to live in England.

[Hydrox]

Just registered on mobile, no problems and just took 5 minutes. Thanks for the thumbs up.

[Cakeface]

Hello, I wasn't aware of this. I completed the form on the survey page and at the end it took me to the government page 'register for an antibody test kit'. Do you know if I'm meant to register on there too, or wait for an email from the survey?

[Lola367 in reply to Cakeface]

Hi, I have taken part in this survey, you need to register on the gov website too but select the name of the survey in the drop down box. The results give you a 'yes' or 'no' answer only as to whether you have antibodies. Mine came back as a 'yes' which I was pleased about but of course no idea how many as no detail given!

[Cakeface in reply to Lola367]

Thanks for your reply. I thought I'd need to wait for an email from the covid cancer survey. I'll follow the link

[azaelea in reply to Cakeface]

Hi, I think you’re supposed to register for the antibody test but at the beginning it asks if it is part of a survey which you have to click.

[Cakeface in reply to azaelea]

I tried but it asked for my registration number from the email which hasn't come through yet. I read the small print and it can take 3 weeks. I followed your link but I probably went wrong somewhere

[azaelea in reply to Cakeface]

Not sure what’s happened here. I think my registration number was sent straight away by text. Sorry it’s being a pain. I had one go initially and it took me to the page for registering but not for the Survey. I ticked the Help and they replied straight away telling me to tick Survey which I hadn’t done at first. Hope you get sorted. Regards Fran

[Cakeface in reply to azaelea]

Thanks, I'll wait to see if an email arrives before I try again

[Jynx93 in reply to Cakeface]

I didn’t have a registration number either and just clicked on the.. I do not have one underneath and then it continued.

[Cakeface in reply to Jynx93]

Thanks for that information, I've done it now

[mhos61]

Thanks for this Azaelea.

I have registered, but not holding my breath after reading the reply from Ebot! 🙄

[ciye]

Tried to do this but being on blood thinner excludes participation

[azaelea in reply to ciye]

If it’s Aspirin or Clopidogerel you are on it says that is OK to do test, but not Warfarin or the like.

[ciye in reply to azaelea]

That's good to know, I will try again

[Bluetop]

I did this antibody test, just before I had my third jab and the results came back that I did have some antibodies -no indication of the level, but at least I knew that after 6 months I still had some antibodies. With the third jab 2 weeks ago, my anti bodies should now be at a peak level (I hope).

[Gaithersburg]

I tried to fill out the online form but it said you cannot complete the survey if you are on anti- coagulants.

[azaelea in reply to Gaithersburg]

Hi, it says it’s ok if on Aspirin or Clopidogerel, just not to if you’re on Warfarin or similar anti coagulants.

[CraftySpider]

Thankyou for this, after 3 vaccinations , still no clue as to whether I am protected…I have registered and filled in the Govt. page, hoping it will come soon as it would be great to have some answers after 20 months of shielding.

[piggie50]

Hi Fran, thought I was on to a good thing here, registered yesterday, received a text today with a code to request the antibody test and it came up with, this code is either incorrect or has been used! We cannot send a new code if you have lost it.Guess I’ll just have to give up!

Judy💐

[azaelea in reply to piggie50]

Oh dear, wonder why this has happened. Maybe you could try their “Help” contact and explain what’s happened? Fran

[Rem31 in reply to azaelea]

It’s worked for me so far.... registered last eve, received text with invite and code this morning and hopefully the pack in the next 5 days. Thanks for posting about the survey.

[piggie50]

I’ll try it again later and see what happens. x

[Hidden]

DOES ANYONE KNOW OR UNDERSTAND WHY BLOOD THINNER USERS ARE EXCLUDED FROM THIS SURVEY.? I am fed up with not knowing whether MPN afflicted bods like me (JAK2 ET but also Atrial Fibrillation - hence Edoxaban) have any chance of resuming a normal life, and was hoping for some news of progress in antibody levels after the third dose.......Is anyone studying this?

[azaelea in reply to Hidden]

Sorry, 2haporth, I can’t answer this. I don’t know why it says aspirin and Clopidogerel are alright but Warfarin and other more in depth blood thinners are not. I wonder if anyone else here has any answers, maybe Hunter? I understand your frustration! Regards Fran

[NewBloom]

Thanks, I've managed to register. Good luck everyone x