Not received a letter or text: Hi all I have lupus... - LUPUS UK

LUPUS UK

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Not received a letter or text

Tre123 profile image

Hi all I have lupus SLE and have not received a letter or text from the NHS. I called my doctors surgery and they said they've been sent out! Anybody know what I need to do? Surely I would be one of the many who are at risk?

12 Replies

Hi Tre, I've just had a phone call with my GP about the flare that I am stuck in and he asked if I had received a letter or text. I haven't. He said "well you should have and I want you in the shield catagory because of all your medical hx, not just SLE."

He explained that the system wasnt a brilliant one and he had no doubt that vulnerable people would have slipped through the cracks. He told me if I needed proof of anything he would write me a "to whom it may concern letter."

I think the trouble is, my own GP wasn't asked to review his own patients which includes me. It is done centrally in a tick box exercise so no doubt individual factors might get missed.

I suspect that is what happened anyway.

If you are concerned you can always check with your GP for advice and see what they say. I am very lucky to have a brilliant GP, I hope you do to.

Tre123 profile image
Tre123 in reply to happytulip

Hi I have emailed my doctor just to see if I'm high risk so waiting for a response.

Thank you for replying you have a good doctor! Keep safe

happytulip profile image
happytulip in reply to Tre123

I know but I am so gutted because he is about to leave!😭😭😭😭

Tre123 profile image
Tre123 in reply to happytulip

😥😥😥

I have SLE but I'm not expecting a letter. I'm not on a high or moderate dose of steroids and I think I am just high risk, not very high. I am at home but working, looking after two kids aged 2 and 4 (sharing this with my husband) and don't expect to have to shield. Hopefully not anyway. I guess I am one of the lucky ones.

Tre123 profile image
Tre123 in reply to Redfox25

Maybe I'm not high risk either as my dose is not very high and I'm not as bad as a lot of people so count myself lucky also. 😊

Hi tre,

Give them time, we only recieved a text Monday then our letter today wednesday. My wife has lupus and cancer and now needs shielding an is graded as extremely vulnerable in the very high risk category.

My dad who has copd never received a text but did get a letter Tuesday.

Try wait until Friday morning then consider contacting your GP.

Regards

Oh thank you I will definitely give them more time. Please stay safe

I have had SLE since 2011-13, but I’m only on hydroxychloroquine which is not a high risk. So it seems I will not be receiving any letters.

I am having flare up though, most probably due to stress and drama around. My symptoms are like having the big bad flu, I feel rotten and struggling to even sit let alone walk. But I don’t want to bother NHS since they’re so overwhelmed anyway. So I’m very confused as what to do apart from staying home and waiting to feel better.

This guidance is confusing as few days ago it said that lupus is a high risk and it’s not. It didn’t change how I feel and how scared I am though...

I was told by my consultant that I would not get a letter as am at Medium to High risk I have Lupus SLE

My diagnosis is Mixed connective Tissue Disease which has damaged my lungs (Pulmonary Fibrosis) and I Take Prednisolone 5mg and intravenous Ritaximab. I am also on oxygen therapy.

I haven't received a letter yet but I did receive a text from my local hospital Rheumatology Department with a video to explain who was low to high risk according to the medication and diagnosis and I come under the high risk which means I should self isolate and shielded.

As from tonight my husband will move into another room and use a different bathroom and we will have to distance ourselves including my two adult sons who lives with us.

The video explains everything such as staying away from others, not going to the hospital and my next appointment will be done via telephone or video.

Tre123 profile image
Tre123 in reply to Maureenpearl

I don't actually mind not receiving a letter as I'm fortunate not to be as bad as a lot of people. Even though it sometimes feels like hell on earth but I kniw there are more suffering a lot more than me😢I really wish u all well.. Please be safe

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