Should I have had an at risk letter

[driftstream]

I have AF, a leaking heart valve and high blood pressure, I take various tablets including Levothyroxine and warfarin, I have vitamin B12 injections and then in January this year I was diagnosed with ET so now I take Hydroxycarbamide oh I am over 70 as well. I cant help wondering if I should have be in the shielded category but I never received a letter so I have been self isolating apart from visits to the hospital and doctors for blood tests etc. I am not due to see my consultant for another couple of months so I asked the Doctor at my local medical centre why I was not in the at risk category and he does not think I should be. What does everyone think.

[Chaz1]

Hi, I think most MPN patients whether with a letter or not from the NHS are being sensible and are shielding as much as they can. There doesn't seem to be consistancy across the Hospital Trusts/Haemotologists/GPs so some are receiving letters stating they are high risk & others with exactly the same diagnosis & treatment are being told they aren't.

I know people who have received the letter & are still not shielding so it kind of comes down to doing what you feel os best for you. Do you need to be told you are high risk to then keep yourself safe or are you doing it in any case? Hubby (ET/PV Jak2+, aspirin, venesections but not stable atm) is only going for a walk once a day & avoiding anyone but our household & maintaining social distancing but I have to go to work & hubby won't fully shield as we wouldn't be able to share a bed or be in a room together. So whether he receives a letter stating he's high risk or not it won't make him budge on it. But we arw being as cautious as we can be, I don't want to get it so I avoid people as much as possible.

So really if you think you might be high risk protect yourself as much as you can and then hopefully you'll get through all this. Stay safe x

[driftstream in reply to Chaz1]

Thank you for your reply I have been social distancing people are getting our shopping etc we live on a boat so we can keep away from people and still get exercise so I am living life as if I had got a letter . Take care and stay safe.

[Chaz1 in reply to driftstream]

Good to hear. I bet it's nice on the boat

[lizzziep]

Hi, I haven't received a letter either. However my specialist nurse told me to shield for the full 12 weeks, so I haven't been out, except in the garden. My husband is going out twice a week for shopping, for ourselves and neighbours. I've got ET and high blood pressure and am 67. The hospital sent a nurse to my home to take my blood and I had a telephone consultation with haematology.

I think you're doing the right thing by self isolating.

Stay safe

Lizzie

[Hidden in reply to lizzziep]

The guidance from Haematology at Guy’s hospital is that people with MPNs should be shielded. We have had two letters confirming this and are on the Government high risk list. This has enabled us to have a free recurring weekly delivery slot at ASDA. Although it is my partner with ET, it would be pointless him staying in and then me going out shopping and possibly bringing the virus back. I do think that people confuse the guidance.