Shielding: Just was interested how many of... - PBC Foundation

PBC Foundation
8,092 members6,897 posts

Shielding

kimphoebe
kimphoebe

Just was interested how many of you had a shielding letter, didn’t get the first letter but this week had one from the hospital saying to keep shielding till August 16th. 🤷‍♀️

46 Replies
oldestnewest

Hello Kimphoebe I got a shielding letter but it was from my rheumatologist so for my vasculitis I think although having early cirrhosis as a result of my pbc may have factored in to the risk assessment I take azathioprine for my vasculitis and I think this was the main issue. I am too unwell to work so I can stay at home and shield the letter was useful as I was able to get priority delivery for food.

Take care Jane

kimphoebe
kimphoebe in reply to jane1964

Thanks Jane

My gastrolagist said I should be shielding when I saw her 3 weeks ago. I get treated in England for my pbc even though I live in Wales so prob slipped through the net for the first letter.

jane1964
jane1964 in reply to jane1964

I am in a similar situation I have a rheumatologist in England as I used to live there and was able to keep him when I moved as I have an extremely rare version of my rheumatological condition, but live in Wales.My rheumatologist wrote the letter from England , Wales are maintaining their own list.I sent a copy to my Welsh GP and asked him to add me to his list which he did.I wanted to make sure I was on Welsh list as later on if there's a vaccine it will probably be GPs who sort this and wanted to make sure he knew.Also you need to be on Welsh list for the supermarkets.Interestingly I never heard a word from my gastro consultant in Wales!

kimphoebe
kimphoebe in reply to jane1964

Hi Jane

Didn’t think about the vaccine, maybe I’ll give my gp a ring on Monday. They get letters from Birmingham where I’m treated but they don’t go into detail. Don’t think my gp knows I’ve progressed to cirrhosis. Thanks for the info. 👌

Lilbear89
Lilbear89 in reply to jane1964

I live in Wales and haven't had any letter about shielding but I do only have PBC so not sure what is going on really. I have tried contacting my Dr, my Gastro Dr and I have tried getting in contact with someone from QE hospital in Birmingham but no luck. I have been staying away from everyone but I live alone so I have had to go out to get essentials. I'm getting a bit worried because I'm supposed to be starting back at work soon which is a nursery. From what I have found out myself from the net I'm not anymore prone to catching COVID but would be more prone to complications if I did than a healthy person.

Sorry for the rather long post.

Hope everyone is staying well and safe xxx

kimphoebe
kimphoebe in reply to Lilbear89

Hi lilbear89

My gastro in the royal Glamorgan got in touch with my dr in the qe. Which dr do you see there, I’m under Dr Trivedi, I also had a telephone appointment with him last week.

jane1964
jane1964 in reply to Lilbear89

Hello Lilbear89

It seems to have been a very disorganized process.I would try your gastro consultant again I think if I were you to see what they think.If you don't get any help there maybe the pbc foundation could advise you what to do next.You need a proper answer .I hope someone can help you.

exy21
exy21 in reply to jane1964

It's the Azathioprine as it suppresses the immune system.

jane1964
jane1964 in reply to exy21

Yes it's the azathioprine mainly I think that means I have to shield plus done other things all taken together. I take it for my vasculitis in my case I've been so fortunate it's vastly improved my life and as a bonus my liver function tests improved and went back to normal.I don't mind the shielding I'm just grateful to feel better.

exy21
exy21 in reply to jane1964

Only med keeps my liver in check. Specialist said if I wasn't taking it I wouldn't need to shield.

I had a shielding letter back in April, but I've heard nothing else since.

kimphoebe
kimphoebe in reply to hells456

Hi hells

It gets very confusing, but kept myself safe either way.

Not had any communication from the NHS at all.

Hi there,

My letter came from my gastrolagist but my brother in law had one from the Welsh Government as he as had a kidney transplant. I read it and Its as anyone with single organ disease Listed 🤷‍♀️

I never had a shielding letter, but I was able to ask my consultant about it in April. She said I didn’t need to shield , just make sure I followed the government advice.

I think we are all at different ages and stages, so that must be a factor, as well as having other health issues.

I did did stay home most of the time and was able to get delivery slot for foods, so practically shielded anyway, I went with my gut feeling and stayed home.

kimphoebe
kimphoebe in reply to Candy12

Yes that could be the case thanks

I live in London a d did not get a Shielding letter

Mid June I got a phone call from local Council saying I was their Shielding list and NHS should have written or texted. I said neither had happened. Then I got the second Shielding letter from Dept of Health signsaying what happens next. I rang my GP

....basically the process was a mess. My GP said no need to Shield just be careful which I was until I saw my grandkids when I hugged them. It was worth it 😊

kimphoebe
kimphoebe in reply to liver-bird

Hi there,

Here in Wales we are aloud to bubble with my daughter and grandkids from Monday including shielding people, but it does stress that our risk is slightly higher when we do., but if I don’t hug my grandkids soon I’ll burst. 😊

Hi,

I am in London and had no letter to shield, but my consultant told me to shield.

Hi

I live in London and work on the frontline, was not told to shield 🤦🏼‍♀️ GP didn't have a clue .

It seems to be a bit hit and miss doesn’t it! I live in Gloucestershire, haven’t heard off the nhs, my consultant nor my GP since I last had an appointment back in feb for my pbc, obviously this was pre Covid-19. I decided to shield myself anyway, I can work from home and have only been out to a supermarket or anywhere with a high volume of people once since lockdown began.

Must admit I’m looking forward to getting back out into the world again!

Hi there,

Seems hit and miss but single organ disease is listed on the shielding letter. 🤷‍♀️

Doesn’t it say ‘solid organ transplant’ on the letters at point ? Then at point 5 (on the Scottish letter anyway, the one applying to me) it says about people who are taking immunosuppressants? That’s like azathioprine, etc. I’m on MMF, Mycophenolate Mofetil so I’m shielding too.

Hi there

Yes it does say that 👌

BTW, after posting before I had a scout about and found it’s the BLT website (British Liver Trust) that’s got IMO the clearest interpretation of the guidance for people with liver disease. It also goes into detail on decompensating cirrhosis and compensating. You might find that helpful.

Thankyou 👌

Hi

I live in England and have had three letters about shielding, the first in March and the last a couple of weeks ago. I have PBC with features of AIH so take azathioprine. I have to shield because the azathioprine lowers my immune system. I don’t think you necessarily have to shield if you have PBC but I suppose it depends on what stage you are at, medication and age. Best to be careful! I am apparently on the shielding list sent to supermarkets but that has not helped me get priority for delivery slots.

exy21
exy21 in reply to Bunter

You should phone your number on shielding letter to get put on priority slots.

Bunter
Bunter in reply to exy21

As far as I can remember I did and the last letter I had about shielding confirmed that I am on the priority list at seven supermarkets. The two I use don’t give me priority slots but I managed eventually to get delivery and it now seems to have got a bit easier. I suppose they had an awful lot to deal with originally.

exy21
exy21 in reply to Bunter

I got text saying I was in lists for supermarkets but only one that does is Tesco. Waitrose I e-mailed and they were rubbish and told me only elderly were prioritised. Sainsbury's after e-mail were 24hrs and I was on the list.

kimphoebe
kimphoebe in reply to Bunter

Hi bunter

Maybe because I have cirrhosis and only recently got flagged up to my gastrolagist here in Wales. Been to her for bloods that were requested by my pbc doc. Xx

Hi there , I live in Scotland and have PBC with severe scarring l. I work for the NHS and was advised by my Gastro Consultant that I could still work as I wasn’t on an immunosuppressant . X

I’m going to ring my gp tomorrow, he prob want have glue neither. Seeing my gastrolagist soon for more bloods which I need taken every 4 weeks due to just starting bezafibrates. 🤔

Got my shielding letter last week. Not for PBC but I also have COPD amongst other things

Sorry to hear you have other issues aswell as pbc as if that’s not enough to deal with. Xx

Those that go a shielding letter did you also get a text

kimphoebe
kimphoebe in reply to kingsnorth

I didn’t but my letter came from gastrolagist x

I don’t know if l had a letter as l have been in Spain since December but flying home next week. I’m hoping l didn’t get a letter

Hopefully you haven’t, as long as you have been careful

I received a letter from the local Council saying I had to shield, and it had little NHS logos all along the bottom of the letter... but it was from the local Council, not my consultant/hospital or GP so I'm honestly still confused as to whether or it was a "proper" letter... did anyone else get one from their local Council as opposed to from a GP/Consultant?

(I did telephone my GP to check, but the receptionist just told me that they were not sending any out and that was all she knew).

kimphoebe
kimphoebe in reply to FairyFae

Hi there

It can be very confusing, mine came from hospital but not at the beginning of pandemic. Only when shielding was extended. I did shield anyway as I have cirrhosis so thought it was best. Xx

I think because cirrhosis is ‘severe liver disease’ you shield if you have cirrhosis regardless of whether you’re on immunosuppressants. I looked at several lists away at the beginning and can’t remember all the details now. If you have just PBC without any cirrhosis then you don’t shield.

Bunter
Bunter in reply to FairyFae

I had a letter from the council too. I have also had phone calls. The first one said I was entitled to a food box. When I said I didn’t need one, the lady said, 'But you are entitled to one'! However I declined as I was able to get food (kind neighbour, local shop delivery and eventually supermarket delivery ). Also have had Covid updates from council and a phone call to check I was ok!

When a consultant from the QE rang me for my appointment he said people with autoimmune liver disease are highly vulnerable. But Prof Neuberger on PBC foundation webinar said PBC doesn’t make you you any more likely to catch Covid than anyone else unless on immunosuppressant. I suppose it might be harder for us to fight it if we became ill. It is all very confusing. Best to be careful. Stay safe everyone.

witchiegirl
witchiegirl in reply to FairyFae

I had a letter first from the Scottish NHS, then registered with the council, a letter then came from Scottish gov about help that was available from local councils. More recently I had 2nd NHS letter extending shielding till late July ‘at least’. Also had phone call from local GPs telling me to shield. I lost my phone in December so had no mobile number to register. Recently I replaced it, with new number, and I’ve had a text or two. Most recently a text reminding me about the different Scottish guidance when England eased guidance ahead of the devolved nations.

I live in Scotland and have been shielding since the start of April. Received the letters, phone calls from GP, get the food boxes, text messaging.

As well as pbc, I have COPD and had just been diagnosed with early stage lung cancer and had radiation therapy end march.

My biggest stress is getting supermarket booking slots, only Tesco's deliver to where I live.

Also, the foodboxes are not gluten free!

You may also like...