ET to shield or not to shield, that is the question?

[Lainy1]

Why are all GP's not singing from the same hymn page ?

[friendofpiglet]

Because the hymn sheets haven't been delivered yet.......?

Andy

[Mostew in reply to friendofpiglet]

Thank you for making me laugh . ! U are so right !!!!!!!

[friendofpiglet in reply to Mostew]

Where would we be if lockdown banned laughter I ask myself.

[Mostew in reply to friendofpiglet]

'they' might yet!!!!!!!!

[Tico in reply to Mostew]

🤣🤣🤣

[yarrowleaf in reply to friendofpiglet]

Dear friendofpiglet--- That would be the end of us all 😱 I swear theat laughter keep me alive !!!!

[Wyebird]

We are all different along with our MPN many of us have other medical issues. Others have none. Also I believe that in Scotland if you had PV or ET then you need not shield although I haven’t a clue where I got that info from lol

[Arty16 in reply to Wyebird]

Hi. I'm in Scotland and have ET snd my Gp put me on shielding list. I was not on it initially but talked to them and they put me on it

[DJK12 in reply to Arty16]

I seem to remember on the 2nd MPN Voice webinar that the Scottish consultant said that we were put on the shielding list if on immunosuppresants and we were identified from a central prescribing database. I think this caused a lot of confusion and distress as consultants and GPs denied they could put other patients on it. Glad yours managed to.

[Wyebird in reply to Arty16]

Did it make you feel safer?

[Arty16 in reply to Wyebird]

For me yes. I am also carers for my 80 year old parents. So it meant I was being safe for myself and them

[Lainy1 in reply to Arty16]

That's good you keeping your family safe too.. I just wish all GP would see ET taking hydroxy as shielding.. might look into changing gp as they not helpful at all. I've been waiting 2days now on a phone call.. I understand that they are pushed to the limit but I'm a patient too.. stay safe 🤗

[Arty16 in reply to Lainy1]

Totally understand. Luckly my gp is good although I had to educate a bit. Others in the same practice are not. If u are moving gp ask to speak to one first to see how they are

[Lainy1 in reply to Arty16]

Yeah I will thanks, good advice. My gp had never heard of ET when i was diagnosed 4yrs ago.

[Wyebird in reply to Arty16]

Brilliant that’s a big task you have taken on . Keep safe xx

[AndyT]

Many GPs probably understand very little about ET as it’s such a rare condition...

In the UK we’ve all been classified as extremely vulnerable on the basis that MPNs are classed as a type of blood cancer.

Logic suggests that there must be different levels of vulnerability depending on which MPN you have and the degree of control / progression but I’m happy to err on the side of caution and have pretty much been shielding since last April, even though my haem suggests I am probably fairly low risk with ET controlled with Pegasys.

[Bridie123]

It is not the ET alone. I am on hydroxycarbonide and that is chemo! I have been told to shield. Are you just on asprin?

[Lainy1 in reply to Bridie123]

Hi, I'm also on hydroxy for almost 4 yrs now... take clopidogrel too..

[Bridie123 in reply to Lainy1]

I am taking the same as you and have been diagnosed about the same time as you, live in MK and have shielding letters from the beginning show your doctor he is out of step 😉

[Bridie123 in reply to Bridie123]

Actually I think it was initially from the hospital too

[Wyebird in reply to Bridie123]

I was told by my GP that I wasn’t high risk but I did get a shield letter from my hospital treating me for ET.

[Lainy1 in reply to Wyebird]

It's all so confusing and imensly frustrating. Criteria on NHS inform states "people who have a cancer of the bloods bone marrow" And that's us. Active treatment at any stage chemotherapy, again that's us on hydroxy..

[AndyT in reply to Bridie123]

I’m on aspirin and Pegasys - the jury seems to be out on whether the latter might compromise my immunity or actually offer some protection against Covid..!

[Mazcd Partner MPNVoice]

Shielding letters will be sent out once again.

[DJK12 in reply to Mazcd]

Yes a text on Monday night from gov.scot, to those on the Scottish shielding list, said letters are being sent out this week. The only real difference I can see on this short text, from the first lockdown advice, is that we can take exercise outside house/garden. The letter will provide evidence for shielders to show employers if they can't work from home.

[Lainy1 in reply to DJK12]

Hi, have you been told to shield purely due to a MPN tho ? I know some people have Other conditions too. Im sick of sounding like a broken record, saying some people with ET who are on hydroxy have been told to shield... my gp just not on board with this at all..

[DJK12 in reply to Lainy1]

Yes - as mentioned in a post further up I presume I was put on it because I'm on ruxolitinib. I was also told I was immunocompromised for other reasons before going on it, but think I was identified purely through a prescribing database. The only other person I, personally, have heard of locally on the list has severe heart problems, but other people I know with some multiple health problems, not mpns, didn't seem to get on it. It just wasn't explained how decisions had been reached and didn't seem to help that it wasn't consistent over the whole UK. My consultant told me to shield 3 weeks before the letter came but certainly didn't seem to have had anything to do with it. The GP surgery just said it was nothing to do with them when I was getting anxious about the letter taking time to come.

[lizzziep]

I didn't get a shielding letter last time so don't expect one this time either. I'm retired so don't really need one. I've continued shielding as much as possible since last March. We try to get click and collect or deliveries for groceries, not always available. We don't have family nearby and we shop for neighbours who are even older than us so we sometimes have to go in shops but try to stick to little local shops.

[mark382 in reply to lizzziep]

I didn't get a shielding letter. Maybe because I'm only on aspirin and venesections. I also have asthma and care for my wife who had a stroke 12 weeks ago. I have shielded myself since March. Shop online and go to local shop every week for essentials and M&S for other food once a fortnight. Fingers crossed no hiccups with roll out of vaccine. Keep safe.

[Lainy1 in reply to mark382]

Hi,I'm sorry to hear your wife suffered a stroke, that's really good you are being so precarious. It must be a very difficult and testing time for you both. Best wishes and continue to be safe.

[lizzziep in reply to mark382]

I hope your wife has a full recovery. We live in difficult, scary times. Stay safe.

[Mostew in reply to mark382]

I’m only taking aspirin and get monthly letters....

[mark382 in reply to Mostew]

Can I ask what country you are in, as that looks as if it can make difference. I believe in England you can go online and register. Unfortunately in Wales we dont have that option.

[Mostew in reply to mark382]

Norfolk England.I didn't go on line. Don't want to registrar.. ....

Good to have option though......

[Lainy1 in reply to mark382]

Scotland

[mark382]

Yes it is a bit difficult. But, as she says we are fortunate in that it hasn't affected her mobility. She had mobility issues before and they are no worse. Lost half the vision in both eyes and can't read or write and struggles with memory. But we make the most of what we've got. Take care and keep safe.

[Lainy1]

You both sound very strong, i hope things improve and you get through this very difficult time. Hope 2021 is better than 2020 🤗