Being taken off shielding list?

[Penny-10]

Just watched the 1st August video. Very informative, thank you. Just wondering what others think re Scotland taking mpn patients on aspirin only off shielding list. I have ET jak2 positive on aspirin only since 2012(from England). I was shielding when received letter mid April til August. As I work in a hospital I could not work from home so returning to work on the 1st August was very strange. I know shielding has paused but I worry being taken off the shielding list, how can you have 3 months off work then be told you didn't need too (already get comments from colleagues you were lucky to have all that time off, with a reason). Plus at the moment my boss is keeping me away from covid19 positive patients and putting me a the least possible risk areas you can get in a hospital. If get taken off shielding list I know I will be put straight back in.

Do you think we will be taken off the list in England and do others feel the same or am I just being silly?

[lizk1993]

Hi there, I don't think you're being silly - it's natural to be concerned, especially when working in a hospital as you do. If you do get taken off the shielding list, make sure that you make your worries known. Incidentally, I live in Scotland and, despite having heart disease as well as PV, I've never been put on a shielding list. I think that's true for most of us in Scotland, though someone may tell me differently. Take care. Liz

[Penny-10 in reply to lizk1993]

Thank you for the reply I do not understand the shielding letters being soo hit and miss.

[Chaz1]

Your employer would have to complete a risk assessment if they put you back into more risky environment. They should have one for everyone anyway but should complete one for those with medical conditions & potentially pit it through Occupational Health.

The Shielding List has been very hit & miss - Hubby has ET/PV jak2+ treated with aspirin & venesections (and hasn't been stable this year) we are in England & he wasn't on the shielding list at all, we did try with no joy.

If you are part of a Union they can support you or ACAS will as well.

[Penny-10 in reply to Chaz1]

Thanks for your reply. I did do a risk assessment when I returned to work and was put straight into the high risk section because I had been shielding. Take care

[mark382]

I've been watching the shielding threads with great interest and trying to find a common theme to see who is shielding and who isn't and it appears to me it was very hit and miss. I have PV and am on aspirin and venesections. I also have asthma and didn't receive a shielding letter. Fortunately I am retired so work issues aren't a problem, but I did impose a sort of self shielding regime. I also live in Wales. If I was working I would certainly be speaking to my manager and going through a risk assessment with them. I wouldn't accept a Generic Risk Assessment. It would need to be a personal one and I would expect to have input into it. Keep safe.

[Penny-10 in reply to mark382]

Thank you for your reply. I did the risk assessment for the clinically vulnerable as I had been shielding, but if get taken off shielding list I suppose this will change. Still don't understand why some got the letter and some didn't. Take care.

[DJK12]

Living in Scotland and finally discovering how the shielding list had worked was very interesting.

What I gathered and I hope I have this correct (please correct me if I'm wrong) , the original shielding list for mpn patients in Scotland was drawn up from patients on ruxolitinib and they were identified by the Nation Chemotherapy Prescribing List. So it appears it was neither consultants nor GPs who triggered the letters.

This tied in with the advice given on this forum in March from MPN Voice experts that ruxolitinib patients were possibly at most danger.

However, in addition, a manual override could be used to put more patients on - presumably triggered by consultants or GPs looking at individual patients' needs or after being contacted by a patient and then reconsidering cases.

The waters were then muddied by other blood charities appearing to put a blanket shielding necessity on to all blood cancers. So we ended up none the wiser how it worked and who was deemed at most risk and am I right that in England it varied considerably? Understandably that is very scary and it needs more explanation.

Just to add more confusion two weeks before lockdown my consultant (in Scotland) told me to shield and I asked if it was because I was on rux and he said no it was because of having MF plus, prior to taking it, being immune compromised. I think to be fair to the our consultants no-one knew the actual risks to all mpn patients from the virus but it is daily becoming clearer.

[Penny-10 in reply to DJK12]

Thank you for you reply. All very confusing. Take care.

[Val_P]

I think the clotting issue with Covid also puts us with MPNs at higher risk

[Penny-10 in reply to Val_P]

Thank you for your reply. That was my thinking why we should all have got the shielding letter. Take care.

[EleanorPV]

The Shielding list in Scotland was a mess. I have PV taking aspirin and Pegasys. My wbc are low (normal ish). I'm fortunate as I work at a hospital but I'm university staff and I'm able to work from home. Their risk assessment has me as 'dead' if I catch COVID (this is not true if you don't know already).

I had some sort of virus in April, I'm still experiencing post viral issues.

I know many NHS Shielding staff being returned to work in a 'covid safe' environment. Good luck. Can you contact your union (if you're in one)?

[Penny-10 in reply to EleanorPV]

Thank you for your reply. I feel I am being protected as much as possible at the moment as I have been risked assessed as high risk. I was only worried if get taken off the shielded list (seems funny I want to stay on it now, when I first received the letter I was upset as I wanted to work and help). Hope you are feeling better soon. Take care.