Should I mention this to the GP?

[Toddlerteaplease]

I have MS, wasn't sure if I should have been shielding or not, as there was no advice from the MS society and never got the letter from the government. So I decided that I would carry on working (nurse) and not shield. (Live on my own with no local support, would have been unbearable)

Discovered when I downloaded the NHS app that the My gp had been told that I was high risk. But they never told me!

I've got a phone appointment on Friday, would you mention it to them. I don't want to complain. But it's not acceptable.

If your record was coded as high risk by the government your surgery would have had no idea you hadn’t received the letter and were not aware. Did you not think to check if you were high risk?

No, to be honest I thought if I didn't get the letter then I wasn't high risk. The only guidance i could find from the MS society was for people who'd had my treatment within the last three years.

Three months. I had it 3 years ago.

My GP are usually excellent and very on the ball. So I'm very supervised that I had no contact from them.

It took me over 6 weeks to receive the letter (asplenic) so there were issues with them getting out. I would ask the gp so you know what to do with local lockdown but it sounds as though you may fall in the clinically vulnerable group (not sent letters but needed to do stringent distancing) rather than clinically extremely vulnerable (letters sent to advise shielding). There’s a few shielding groups on fb that may have members with the same condition as you who may be able to offer more insight to help support you moving forward.

The surgery where I work did try to contact every shielded patient to see how they were and if we could do anything to support them - but it’s possible we might not have managed to speak to them all. I get you are frustrated but I don’t think it’s the surgery’s fault necessarily, and I’m not sure what complaining will achieve for you moving forward.

Fellow MS sufferer here. It was my understanding that MS did not qualify as the very highest risk and therefore we would not get letters. I didn’t get one. It kind of felt to me that we were the ‘forgotten’ category once the letters were sent as it was only the extremely vulnerable who were protected by virtue of their letters.

Lots of people with neuro conditions weren't shielding officially but chose to do so. Many conditions were listed on the government 'vulnerable' list - which has now been removed - that would put people at more risk IF they got COVID but were no more likely to catch it as a result of their condition and therefore should follow rules for all. The shielding guidance changed and evolved throughout too.

It may well be that you would have been classed as vulnerable but not at risk enough to qualify as 'shielding'. There's no harm in asking for feedback from GP for future reference but being in shielding group may have disadvantaged you unnecessarily Re work, staying home etc. if you felt you didn't need to. Others have requested that they be escalated to the shielding group for support purposes.

You're not alone in feeling uninformed. Good luck and don't hesitate to ask GP for more info.

High risk isn’t the same as shielding (Clinically Extremely Vulnerable) and only shielding got the letter. So perhaps because you’re in the first category not the second?

@HoneyandToast yes. I totally agree. Though the entry in the records said highly vulnerable. I did get a letter at the very end of shielding to tell me the guidelines were changing. Bit late then.
I just feel that I couldn't make a fully informed decision about how vulnerable I actually am. Work were fab but were expecting me to get 'the' letter.
I was very surprised that I heard nothing from the GP or the MS team at the hospital, who know me well. But don't see me often anymore.

I had immunotherapy about three years ago. It completely wiped out all your T &B cells, was still on monthly bloods up until lock down. So who knows?!

I have MS too, at first MS was included, then not, I was shielded but quite a few weeks in tbh. We had already decided to shield as a family. But being officially Shielded had advantages as I could then access a priority shopping delivery slot, which was an absolute godsend, as before this we really struggled to get a delivery. I can only assume my consultant chose to shield me.

I had a text rather than a letter.

Two people I know asked their surgery if they should have received a letter. They should have and then did !

Although decided not to sheiks. I did feel that I couldn't without a letter.

@MadisonMontgomery I don't want to complain, just make them aware.

I would mention it so you get a letter next time, if you ever need one.