Hello
Following the updateto the Policy statement re the pre hospitalisation treatments I have been awaiting a letter but nothing has come.
The NHS Inform website says contact the regional Health Board (Dumfries & Galloway in my case) if you meet the eligibility criteria but they say they only deal with people that already have the priority PCR test result . I pointed out that I have never had anying in writing about Shielding( had to argue with GP practice to be belatedly added)/ Third Jab (had to nag by email to get a phoned appointment) / Booster (now overdue). Health Board then said speak to my Haematology Department that is supposedly the source for the letters and are now checking …
My question is does anyone know which Health Boards in Scotland are issuing letters?
I was impressed today as a new priority PCR kit arrived in the post. I used mine over the holidays thinking I had Covid-19. The result was negative and it seems more likely that I had flu.
Once I was better I made several calls to 119 to get a replacement test kit, and although they wanted to help they said it was not possible. However, the last person I spoke to said that she would escalate my request, and it seems that someone was listening.
I have seen this somewhere too - perhaps it was in some of the NHS correspondence relating to data trawls. Either way, it’s ridiculous!!
Your situation sounds similar to mine 
This is all taking up so much time for everyone and causing so much stress!! I’ve spent hours at it! We shouldn’t all have to have degrees in medical coding etc!!! Hope we can get some answers! Thank goodness for BCUK!
Hi @UncleRoy perhaps it is worth a call to the Blood Cancer UK helpline to see what Scotland are doing.
Please let us know how you get on, good luck
I just to say say I’m due to have that monoclonal treatment tomorrow and it is because I contacted my doctor and he contacted the hospital who have now arranged it hope that helps
Well done and good luck hope it helps 
take care
I’ve received an email from the Office of Andrew Gwynne MP, who is in contact with BCUK on this issue and will also be meeting other patient support charities next week to further discuss antiviral and antibody access, as well as priority PCR testing. Andrew Gwynne has also tabled several Parliamentary questions, which I will post a link to when they are published. Hopefully, that may bring some resolution for those struggling to obtain priority PCR tests.
Well done for getting him involved! We emailed him on Sunday and copied the email we sent to Mr Javid - but the auto reply said he can only answer his own constituents so I don’t really expect to hear from him. Thanks for keeping us updated.
Hello
Still chasing my tail - Health Board to Haematology Dept to GP ( all know nothing about the letters) but BCUK have got the link to the Scottish letter
https://www.sehd.scot.nhs.uk/publications/DC20211231letter.pdf (dated 31-12-22)
So now I know who to berate about non-receipt.
As I pointed out to BCUK I have had nothing in writing at any stage about Sheilding/High Risk Listing, Third Dose Booster Dose or nMAB or oral antivirals And now following Omicron all precautions are being abandoned! Oh well settle down and do another puzzle or read another book - just when I saw a glimmer of hope …
Oh @UncleRoy what a palaver, yes, de-stress.
What puzzles do you do and what sort of books do you like?
Look after yourself.
Hi Erica
I do 1000 piece puzzles and to make it challenging (not much point otherwise) I do not look at the picture and set all the edge pieces aside until the end. Here is the latest…
Hello and welcome @Hillssy. We are really glad you have joined the forum and hope you already feel supported. We are still awaiting some feedback from the NHS regarding how those in our community can be reassured they are on the COVID treatment pathway by receiving a letter and PCR kit. What I would say is that it is useful to have a PCR test at home ready if you do develop symptoms get a PCR test as soon as possible, if positive then contact your treatment team who can refer you for assessment by the CMDU. Here is our current advice: Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK and do get in contact if you would to talk things through How to contact Blood Cancer UK | Blood Cancer UK. Kind regards Gemma
Wow @UncleRoy!! That is incredible. Thanks for sharing. I would never want to break up a puzzle like that after all the effort involved. Amazing! Well done. Warm wishes. Willow
Oh my goodness … you do like a challenge. I became addicted to jigsaws last year (to keep my husband safe I shielded as well) but I did it the easy way😂. I had a small ‘business’ going - buy them on eBay, do them, sell them on eBay. Keep safe😊
Hi Paul I have chronic leukaemia and a couple of weeks back I got a letter and a priority PCR test kit and then about a week ago I got covered and today I went to my local hospital and they gave me an infusion that these new antiviral drugs mono something the rather I can’t remember the name however just a while ago I spoke to my my specialist nurse who said they haven’t a clue about these drugs and have not been informed about the drugs or the letters being sent to cancer patients and I said to them that is silly because you are the experts and he said honestly Bob we have this level know nothing about these new antiviral drugs they are giving people how strange is that
If it’s any help when I phone my GP he said to me that he had a specialist team upstairs who would get on to this with urgency and relay it to the people involved at the hospital who give out these new drugs
I hope all’s well but about a year or so ago my doctor decided in his own wisdom I didn’t need to be on their priority list so he took me off the list because he is showing but I wasn’t on on chemo and my cancer was cured when I phoned him and told him I’m on Watch and wait I’m not on chemo but I’m still very vulnerable he argued for a bit but I was persistent and he gave up and they put me back on the list but he only put me back on the list to make me happy but he said I thought mate this is my life you’re messing with and to be fair since his day day and yes I did go off a bit home whenever I phone and they respond white rapidly I hope you all have the same result and get the treatment she deserves and god bless you all
Hi Bobby, I’m really glad to hear you were treated, though it sounds like you had to be quite persistent. It’s bizarre a specialist nurse didn’t know about these treatments. I hope the treatment works well for you and you’re over it very soon. Let us know how you get on.
Wow, you do like a challenge don’t you, this is really beautiful