Ah, that’s great to hear, @heatherthomas - although sorry you’re still suffering some effects. Yes, any impact on breathing is worrying - thank goodness that is improving. It sounds like you’ve had it quite badly.
Quite right regarding the house work - that can definitely wait! Fingers crossed we have some more sunny weather so you can sit outside for a few more days.
Take it easy.
@Fullofbeans
I’ve done a test, and I’m negative, I’m feeling much better, but still have a few aches
…still haven’t done the housework 
Great news @heatherthomas, be kind to yourself, housework is like the 4th bridge, as soon as you finish painting the bridge the first part of the bridge needs painting again.
Hi all, we have a quick question to…
- people with MPNs who are on treatment and
- anyone with Myelodysplastic syndrome (Myelodysplastic syndrome (MDS))
Have you received your pack of government issued lateral flow tests?
We’re keen to make sure that anyone eligible for an assessment by CMDU for Antibody and antiviral treatments, has access to lateral flow tests.
We know there have been issues with government communication around these treatments, to the above cohorts of people in the past, so it would be really useful for us to know whether this has been rectified.
Important to note that anyone immunocompromised who hasn’t received them can still order them free here - Order coronavirus (COVID-19) rapid lateral flow tests - GOV.UK (www.gov.uk)
Hi Alice - I have a MPN - ET - and am on treatment - I have found on applying for tests online I have been able to order LFTs since the general free ones not been available - eg I have just ordered a pack today - so presume that means my details as I log in show I am eligible for free tests still which has been really good to find and looks like things are improving for MPN patients. I have not had cause to approach for antivirals as I have not had Covid as yet but it would be a big help to know access to them would be straight forward if I did as I know until recently many fellow MPN patients have had trouble accessing it, albeit some also have found no trouble at all getting them. Lack of consistency between health trusts even seem to make a difference. I know last week when I wasnt well and had some Covid symptoms, testing each day for five days, all negative phew - but it did make me realise when feeling ill you do not want lots of hassle trying to get the help you needed and even are entitled to.
Thanks as always for the work going on in our behalf.
What you say is so true that when you are feeling ill you do not need the effort, anxiety and stress of having to fight your corner for antivirals.
How are you feeling now @Jilly20?
That’s great news, @heatherthomas! Yep, I shouldn’t do that housework until you’re 100% better from the covid, have relaxed a bit, have done some nice things, and then relaxed a bit more - then maybe do the housework! Take care.
Hi @Alice_BloodCancerUK. Thank you for all you and your colleagues are doing. I have myelofibrosis and am on Ruxolitinib. I received my government pack just over a week ago. Warm wishes. Willow X
I know the new rules say we can only get free LFTs if we have symptoms but i logged on this morning to see if i could order tests and was surprised that when i truthfully said i did not have symptoms the order has been processed.
Do we know if this will continue or is it just a delay in actually putting the new rules into the system?
Hi @Alice_BloodCancerUK, my husband has ET and takes hydroxycarbamide. Last week he was sent an email from the NHS letting him know that he is eligible for the free Covid test and has also received a pack of the tests. Thanks for all of the work that you and others from Blood Cancer UK are doing.
Hi @Chrispy I will copy @BloodCancerUK as they might know.
Hi @Chrispy, good question - the UK Health Security Agency (UKHSA) is sending a pack of lateral flow tests to eligible individuals by 12 April. If they run out of tests, eligible people can order more on the government’s website. These lateral flow tests are only for use if you develop symptoms, but you can order them in advance to keep at home for when you develop symptoms. Eligible people do not need to have symptoms in order to order a pack, but are advised only to use them if symptomatic.
On the government’s lateral flow test ordering page Order coronavirus (COVID-19) rapid lateral flow tests - GOV.UK, they state that they ask whether you have coronavirus symptoms to “help [them] track and trace the spread of coronavirus” it is not intended to assess eligibility. I hope this helps?
Thanks @Alice_BloodCancerUK . We will wait and see how it all works. I do get anxious about any possible symptom so do use tests on a weekly basis so i wonder how many they will allow you to order.
No problem @Chrispy . You can order a box every 72 hours.
@Alice_BloodCancerUK
I have not had my free pack of LFT’s, I have ET and am on 1000mg hydroxycarbamide a day.
Nothing has worked for me all the way through this, I had to blag my way into the 3rd jab,
and when I had covid, although I logged a +ve test through 119, nothing came back from that, I had to chase for 84 hours - around different CCG’s to actually get my antivirals, and if I wanted infusion, it would have been another day
The system doesn’t see me, and computer says no.
…saying that, I did order a pack this morning, but I think they are accepting self declaration that you should have one, I don’t think there is a check back to records - yet!
I have just ordered a pack on the link. Thanks very much for posting
How are you , @heatherthomas? Hope you’re completely better now.
I have ET and I am on HU , I have managed to order myself lfts on gov website since the end of free tests for the general population, so I assume that the system knows. I have thus far managed to avoid covid by being very cautious , but have read very mixed reports of people with my condition getting access to antivirals, which is a cause of anxiety.
Given I had to fight for months to get a 3rd primary vaccine, having faith in the system working is quite hard
Hi @caz Yes, our previous experiences do colour our future expectations, you are human.
I hope @Alice_BloodCancerUK can give a better response than me, good luck and stay safe.
I am fine now thank you @Fullofbeans ,
did a bit of housework yesterday, but not all of it
… I am short sighted, so can’t see the dust until I put my specs on, so they have stayed off!