Has anyone in Scotland received a letter regarding isolating due to Covid-19 and MPN?

[RobPV]

I have PV/ET my last blood test was on 19/3/20 and my platelet count is now 970. I have a venesection booked for Wednesday afternoon to deal with my high red blood cell count and HCT. I have not see my gp for 4 years as my mpn is managed by the haematology department at the local hospital. The last time I was at the gp I mentioned my mpn to him and he had never heard of it. He actually looked it up in a book and said oh I've never seen it before. If gp's are involved in the process of deciding who gets a letter then I'm worried that I could be missed. My partner works in the NHS and is in contact with patients every day.

[piggie50]

Hi Rob,

I’m not in Scotland but agree re GP’s , mine does not consider me at risk. I have PV and also take toxic drugs for RA. Do you have any type of site like the government one in England to register? Hopefully someone in Scotland will have some advice.

[RobPV in reply to piggie50]

Hi, thanks for the reply. There is no website for Scotland where we can self register. The NHS one is only for people in England and Wales.

[mark382 in reply to RobPV]

The last time I looked (back end if last week) you could only register for England. There is a link for Wales but it just takes you to a general website and you just go round and round in circles, a bit like the Welsh Government- not a political statement but a fact.

[Hidden]

Yes I got one yesterday -Saturday. I have Post ET MF intermediate 2 and on ruxolitinib and EPO injections.

On Friday I had to phone surgery about a missing prescription for my husband and took opportunity to ask obviously very harassed receptionist about letters. She said 'nothing to do with GPs and they came from government ' and letter is headed 'Scottish Government'.

Perhaps get advice from duty doctor at your clinic on Wednesday?

[Scottishterrier]

Hi Rob

I am from Edinburgh i have ET jak2+ and dad has pv we received our letters both on HU and it says we are very High risk off becoming seriously ill with covid-19 and now in lockdown for 12 weeks as off yesterday why do you not phone your consultant or his or her secretary and find out if you are getting a letter or not it may be delayed in the post

Best wishes

Scottish Terrier

[EleanorPV]

I'm in Scotland. No letter for me.

[Lainy1]

In Scotland too and no letter.

[S031251]

I got letter on Saturday from Nhs Scotland - I have PV and on Ruxolitinib it was dated 1st April. - I’m 68.

[Arty16]

I'm in Scotland. ET and other health issues. No letter.

[mark382]

No letter. I have PV and live in Wales.

[Amacp]

Hi, I'm in Scotland and got the official 9 page letter on Sat. I have ET jak2 positive, aspirin & hydroxycarbamide. Also had breast cancer twice, taking tamoxifen, but not sure if that makes a difference. I've heard that letters are still being sent out.

Stay well

Anne

[Amacp]

Forgot to say, letter was dated 1st April

[RobPV in reply to Amacp]

Hi, thank you for your reply, I would definitely expect your letter is correct. Hope you're keeping well and safe.

[MaryGoretti]

Hi I live in Edinburgh I am ET jak2 positive I had a letter on Saturday morning I had spoken to my GP the previous Monday. The letters was from NHS Scotland but I think our GP’s are asked for input also.

[RobPV in reply to MaryGoretti]

Hi, thanks for your reply, are you on any medication?

[MaryGoretti in reply to RobPV]

Yes on Aspirin and Hydroxycarbamide .

[EleanorPV]

I'm thinking about writing to my MSP. Anyone already done this and received a response?

[RobPV in reply to EleanorPV]

I don't blame you. After the Prime minister had said that specifically people with blood cancers were at risk in a press conference on national tv. The Bloodwise website also told us we are at risk. Some Gp's are at least 12 years behind the latest WHO position on MPN's. Seems to me lots if GP's need retraining or at least refresher courses.

[JohnSC]

Hi, I live in Scotland and I have PV and take HU with no symptoms.

I had a telephone consultation with my haematologist this afternoon and asked about the letter.

He stated that I would receive a letter but that as I am lower risk than many others with more serious cancers it may be few days before it arrives.

[RobPV in reply to JohnSC]

Now this is where I think things have gone wrong, If I'm free to wander around and go to work during what is now week 3 of lockdown, how can I suddenly get a letter next week and I'm all of a sudden at risk?

[RobPV in reply to RobPV]

I am or I'm not

[JohnSC]

As I see it I don’t need the letter to tell me I am risk.

The consultant has stated that I am at risk, which has been my working assumption for the past 3 weeks and therefore I have already been in lockdown for a while.

The letter will be helpful for requesting assistance or claiming travel insurance but it will only be a belated confirmation of a known fact and I would suggest that we shouldn’t wait until a letter arrives through the post to take appropriate action to protect ourselves and our loved ones.

[RobPV in reply to JohnSC]

While that is true, a letter would be very useful to help employers understand our vulnerability.

[JohnSC in reply to RobPV]

You are absolutely right. I didn’t consider that angle.

[lavender007]

Hi Rob

I live in Scotland and have had no letter.ET Jak2+ brain clot and breast cancer which is fully treated.Take HU 1500grm daily no letter called my GP weeks ago and he said "what letter and what difference would a letter make".

As I dont see him if I attend the surgery he made my blood boil, at this time I dont think I can ask to speak to a particular Dr.

Frustrating have been self isolating miss exercise.Lavender007

[EleanorPV]

I’m fighting for my letter. Once I receive it I will share the positive steps of my journey. Until then know that I am fighting for everyone. Every day I’m choosing a different uk and Scottish MP to email. One step forward. I do have a personal letter from my GP saying he’s placed me on the shielding list. At the moment I’m unsure why this isn’t the list which opens any doors. I’m safe and have successfully avoided the virus. Remember to find the positives within this isolation.

[ETphonehome]

Finally received letter from GP a few days ago.

I take Peg IFN for ET and was diagnosed in 2003 following an MI.