Shielding, update

[shiftzz]

I'm JAK2+ PV under control...

I got my letter 5 weeks ago and have been staying in besides walking my dog in remote fields etc, keeping well away from humans.

This morning I decided to write to my consultant asking for confirmation re shielding, this was his reply..

"No, according to our Departmental guidelines you do not need to “ shield”, just obey the government guidelines of social distancing, washing hands, staying at home as much as possible etc., Unless you have another unrelated risk factor.

Extracted from haematology dept. patient guidance:

• “Myeloproliferative:

 Patients with MF on Ruxolitinib, steroids or regular transfusions

 Patients with Mastocytosis

 Patients with PRV/ ET not on treatment and those stable on HU and interferon do not need to shield”

This is from Leicester Royal Infirmary...

Thoughts?

[Sksarj]

It's all mixed messages. My Gp rang saying she was unsure where I fitted in a certain criteria she was dealing with so I rang hematology and although they didn't tell me anything over the phone within days I got shielding letter from my Gp and another from hematology . I had been shielding anyway.

Reading many of these posts it seems to depend where you live as to how you are treated. Sue

[Paul_1971]

Hi, are you on Rux?

[shiftzz in reply to Paul_1971]

Hi I'm on interferon 135 once a week, plus Hydroxy 500 , 5 times a week..

[Paul_1971 in reply to shiftzz]

Ok, just wondered as i know being on RUX is automatic for the shielding list

[MCW22 in reply to Paul_1971]

Hi Paul, I am on ruxolitinib and it took me several weeks of self registering, ringing hospital, ringing gp and writing to gp before I finally got recognised as vulnerable and got a letter from gp. I never got the government letter but at least now I can get supermarket delivery slots which was impossible before.

Carol

[Paul_1971 in reply to MCW22]

Hi, Yes I had to phone. I called the GP's and they asked why i thought i should be on the list. I explained about Rux being a kinase inhibitor and they called back and agreed.

[friendofpiglet]

My shielding notice landed on my mat an hour ago. Thoroughly unwelcome and I'll carry on behaving as I have since the time I should have got it - if indeed I really should have it anyway! (steer clear of anything approaching contact except for the inevitable shopping, take a little daily exercise in largely deserted lanes etc.)

Despite the fact that our NHS doctors, nurses, assistants and others at the front line are magnificent and, from my point of view always have been, I never cease to be astonished at how the admin side can be so shambolic!

[JT_Marlin]

My hematologist suggested that I was not at any increased risk over the general population- that I should just follow the same guidelines as everyone else. (PV JAK2+)

[hall2]

I have ET and attend Leicester Royal infirmary and at my last appointment by phone in late March the haematologist told me I needed to shield! Sounds like things have changed!

[swimswam]

I was told by my Heam. nurse that she had to go through the list of patients in her dept,(Sherwood), and I was sent a letter not because I have ET, Jak2+, but because I am on Pegasys.

[Sheila-collins]

Hi, I'm from Ireland and I'm a nurse and have been advised that I don't need to shield. I can continue working on the front line and with COVID patients. The differences between the UK and Ireland advice is very confusing.

[Wyebird in reply to Sheila-collins]

KEEP SAFE and thank you

[scousesbird]

My husband received "the letter" earlier this week from Guys saying he was very high risk and has to shield until 30th June. This was followed up by a text later in the week saying the same. He has PV and has been advised he has AML and is undergoing lots of further tests which have ground to a halt at present. He has not had anything at all from his local consultant so if he hadn't been under Guys too he wouldn't have been told to shield and would have been working delivering to supermarkets where he would have been at risk.

Personally I think if you are financially able to you should shield.

[Joerp]

I received a letter from guys which said shield “unless advised otherwise by your consultant”. Which very much fits into the same hole as the advice given out during the webinar. That we come under a big umbrella but all have different circumstances and so it’s a personal thing whether to shield or not, so speak to Your consultant. They pointed out on the webinar Hydroxy is a mild Immunosuppressant and if you are taking it it’s not a guaranteed shielding thing and that rux was a bit worse but again not a definite yes. So I have a letter but both my local consultant and guys consultant have said looking at my situation I’m the same risk as anyone else which, to me, trumps the “cover all” letter. So if you can’t or just don’t want to shield till end of June and feel ok at the moment and you haven’t spoken to your consultant (or someone who can see your records, know what they are talking about and advise you personally) then try that and you may get a different answer.,

[Pamaga]

I have ET, Jak2+ and am over 70. My haematologist said there was some debate in the health community about the need to shield. On balance she thought it better to be on the list because of the attendant benefits, e.g priority online shopping.