Important phone numbers if you test positive for Covid in Scotland

[DJK12]

Scottish NHS Inform has now updated information as to what to do if we test positive for covid - it includes very important telephone numbers:

nhsinform.scot/illnesses-an...

It appears we have to arrange our own PCR tests - no mention of being sent them in the post as in England. However it also suggests that infusions of antibodies at a hospital might be offered or the oral anti viral drugs.

Has anyone on this forum in Scotland tested positive for covid and received treatment? Before this appeared I would have been inclined first to phone the emergency haematology number at my local hospital for advice.

Diana

[DJK12]

It appears we are to be sent letters plus home PCR tests, but not sent out yet. However good to have the phone numbers meantime:

sehd.scot.nhs.uk/dl/DL(2021...

[lizk1993]

I hope that's the case, but when I followed your link and clicked on blood cancers, it lists a variety of blood cancer types by name, but no mention of MPNs at all. Wondering if it might be worth registering for the Panoramic study?

Regards, Liz

[DJK12 in reply to lizk1993]

I wondered about that too Liz. The latest information on the Blood Cancer UK site highlighted that MPNs and some other blood cancers weren't on the list. I emailed them yesterday and asked if this was case why were English MPN patients being sent letters and PCR tests and one member already has anti viral drugs. They appear to working hard at clarifying this so probably worthwhile keeping an eye on that site, but it doesn't sound consistent does it?

A forum member in England said they'd contacted own haematology team and they had a pathway to drugs. Possibly if I was turned down I would do that first and then try the backup of the trial. Perhaps (though I realise no-one could possibly want to be in this position) we will hear of someone with an MPN in Scotland successfully getting a drug.

Best wishes Diana

[lizk1993 in reply to DJK12]

I also got a booster rather than 3rd dose as consultant said I didn't need one. Think Scotland takes a different attitude to MPNs and only those on certain medications are considered to be at risk. Take care and best wishes to you too.

[pj1963]

Thank you for posting this, Diana. I emailed my haematology team this morning about this, but the nurse knew nothing about the sending out of PCR tests.

[DJK12 in reply to pj1963]

I see it is now on the BBC Scotland website and CMO says they will be writing in early January to those eligible and sending home PCR tests.

[MWxxxx]

Not every one in England is being sent a pcr test to keep at home. It seems to be a bit random. Good that Scotland is being more proactive, but then again they seem to have been all the way through.

[junebuggy]

Thanks very much for the info. I am currently in my hometown of edinburgh and got a 3rd dose at Ingliston yesterday after going armed with proof of my diagnosis, MPN voice and blood cancer UK letters. I am returning to Scotland permanently after 10 years living in various other countries. I was diagnosed with ET JAK+ last year in England, and still figuring out how to get my medical notes transferred up here, and get a referral to a haematology unit in Scotland. While I am currently in Edinburgh, I'm due to be moving to Aberdeen in the new year to take up a new job. If any of you folks in East of Scotland have any advice regarding MPN specialists in (East) Scotland, getting on the covid 'at risk' list, and anything else about your experience of MPN services etc, I would be most grateful to hear from you!

[DJK12 in reply to junebuggy]

Welcome back to Edinburgh albeit a wet and gloomy one today. Glad you got your booster at Ingliston - the carpark will be muddy today! I had my third primary one there but have managed to book my booster at a more local site.

Having found the Scottish covid telephone info site I hoped it be useful to share! I'm unfortunately prone to serious infection so, especially now with covid, I am keen to have up to date information to hand.

As my post has been superseded by Mazcd's excellent and comprehensive post it might be better for you to repost your request for info about Aberdeen haematology services in a separate one. I was put on a shielding list without asking. I gathered later I was identified by a central prescribing register - I'm on ruxolitinib. Other Scottish forum members had battles about this and would possibly be able to advise.

Best wishes for Christmas and your move up north.

Diana

[junebuggy]

Thanks very much Diana- will do that!