Letter

[Scrollernut]

Just out of curiosity what is this letter y’all are talking about getting? I’m thinking this must be only in Europe as I can’t find any info here in the U. S. on such a letter. What does it do for you? In fact seems like most of everyone is from Europe. Anyone from Chicago area?

[Mazcd Partner MPNVoice]

Hi the letters are being sent to people in England, from our NHS they are giving people with certain illnesses instructions on what shielding measures to take during the Coronavirus outbreak, hope you are ok, best wishes, Maz

[hunter5582]

As Maz indicates, we won't be getting those in the USA. Hopefully the UK - NHS will eventually get it all sorted out for our MPN brothers and sisters in the UK. I expect that if our even larger Federal government tried to do something like this it would be even worse than what they have experienced in the UK. Heaven help us if we had to wait for the Feds to get their act together enough to get specific information out to individual citizens.

I much prefer to have the Feds publish information though the CDC which we can review on our own and draw our own conclusions about what to do. We are blessed to be able to then check multiple sources like ASH, Voice of MPN, etc. to see what the consensus really is. That and speak directly to a physician who we trust.

All the best to all of y'all. Stay safe and stay well.

[Ebot in reply to hunter5582]

Hi there. See my response below. The UK ‘vulnerable’ list (and I hear your concerns about that tagging) is more than just about health advice. And yes, I cannot see how a similar programme could conceivably roll out across the US.

[hunter5582 in reply to Ebot]

It would be a really big mess here in the US - like 50 times worse given how we are structured between federal and state governments. It is tough having to rely on a bureaucracy for access to the valuable services that some of our MPN brothers and sisters need during these challenging times. Having worked in local government for 30+ years, I know both how valuable these services can be and just how inefficient governmental process can be. Hopefully they will get it all sorted out sooner rather than later for folks in the UK.

Here in my part of the world, Eastern Panhandle of West Virginia, there is not much available in terms of governmental support. We are on a lock-down, with only essential services open. The stores that are open are actually doing a good job limiting access and controlling the flow of people to minimize risk. Some delivery services are available, but mostly you are on your own to get needed supplies. They have not mandated masks in public, but more people (myself included) are taking this sort of basic precaution when out in public.

I do think that well all need to take personal responsibility both for our own safety and that of our fellow citizens wherever we live. To paraphrase one of my favorite authors "What makes someone a citizen is when he/she makes the welfare of society his/her personal responsibility." (Robert Heinlein) Hopefully our respective governments and our leaders will take this to heart, both in the decisions they make and in how they personally behave.

All the best to all of you. Be well and stay safe.

[Rackon2]

Ontario Canada....no letter

[Ebot]

Yes, it is a UK thing. There is the advice element but it is also a ‘passport’ to other services like evidence to employers that you need to work from home (and ensure you get paid), priority access to supermarket delivery slots and if necessary, government delivered food parcels.

There was initially a lot of focus on the elderly vulnerable but newspaper reports have increasingly highlighted for example, the vulnerabilities of transplant patients and vulnerable families caring for children and young people with serious health conditions or complex needs.

Yes, there have been some issues getting the necessary information cross checked between all parties and the letters or emails out but all in all it’s a valuable programme.

[Smile2]

I’m from Canada and we don’t have anything like that here either.