NHS notifications : Hi I hope you’re all... - Vasculitis UK

Vasculitis UK
6,538 members5,745 posts

NHS notifications

Webbyj
Webbyj

Hi I hope you’re all staying safe. Has anyone had the nhs notification of being identified as at risk yet? My son has asthma and he got his yesterday (he’s an 28 yr old asthmatic) but I haven’t had one?! I have MPA and also had a heart attack in November. I just wondered if it’s perhaps cos I’m not on any immune suppressing drugs? They were stopped due to side effects. Or are they being sent in batches according to the illness??

73 Replies
oldestnewest

I've no idea on their methods, but can tell you that I received my NHS text yesterday evening. I already knew I was listed as High Risk by my surgery, having vasculitis, a rare disease, lung disease, and being immunosuppressed. As you have vasculitis I'm pretty sure you will get your notification soon, at least I hope so.

Cookyboy1
Cookyboy1
in reply to May7

Yes I think you will get your text, I had my text last night, I have PR3 Anca Vasculitis with lung desease on rituximab and at the moment 20mg of Prednisolone and low immunity, so you will I'm sure be receiving yours soon 👍

Webbyj
Webbyj
in reply to May7

Thank you stay safe x

trebar
trebar
in reply to Webbyj

No I have not received any text yet but I may have missed it as am in hospital at the moment being treated with I/V antibiotics so have been a bit 'out of it' for a few days.

Webbyj
Webbyj
in reply to trebar

I hope you’re recovering well

trebar
trebar
in reply to Webbyj

Am doing, I think, webbyj. Thank you.

Legoland2019
Legoland2019
in reply to May7

not had a text I'm PH3 Anca Vasculitis with Kidney disease and ears nose and throat problems.on prednisolone and Azathioprine and antibiotics.I am still working as I work in the NHS GP surgery. don't know if its because the disease has effected by Kidney and not my lungs. But Good luck to you all.

There is until next weekend for them to arrive.

This is a link to their scoring grid for medications alone:

rheumatology.org.uk/Portals...

on which basis you wouldn't score.

There is another guide for conditions - I think Suzy has put it up in another post.

Webbyj
Webbyj
in reply to PMRpro

Thank you. Very useful. Stay safe x

Not sure about that, my wife is asthmatic but she hasn't had one either, she is not on any immune supressent drugs either so maube that's the reason, I had my text about 3 days ago, We are both isolating for 12 weeks or more (going with the flow as they say), I was doing my last 8 months 3 day working week to gradually tone my working life down so I'm on the sick, my wife is hoping to do that also so to get some sort of cash flow as she is younger than me. So basically what I'm saying is if my wife is going to get that text it would help our situation out a great deal. Pleas let me know how you get on, Cookyboy1.

I got a text from GOV.UK CORONAVIRUS ALERT New Rules you must stay at home etc.

Is this the same thing?

Webbyj
Webbyj
in reply to ludo

No I think everyone had that my sons NHS one is different. I hope your managing ok

Hi, I did no receive anything from NHS yet but I am shielding regardless. I have Vasculitis GPA and had pulmonary hemorrhage last year and Covid-19 attacks lungs. What would a message from NHS signify? You can make a decision for yourself - are you able to shield and is your life and life of others important enough to you to sit at home for next 12 weeks? If the answer to all 3 is yes forget letter from NHS. Protect yourself and your family as best you can, it is a stressful time for the whole world, we are all in this together. Take care.

Webbyj
Webbyj
in reply to NacMacFeegle

Thank you. Yes I’m shielding myself as is my family.

NacMacFeegle
NacMacFeegle
in reply to Webbyj

I just had a call from my GP because I asked about refilling my Azathioprine prescription which I usually get from my specialist during check up in Renal unit. She confirmed I should shield but probably will not receive a letter because my prescription was not on GP repeat prescription list and that is where the data for people as high risk was pulled from. Just proves you should not rely on the system to protect you. Good luck and take care

No, I’ve not received any notification yet, I have EGPA and on immunosuppressants. My husband has asthma, he’s not got any notice either. Doesn’t matter especially as we’re isolating anyway, but it would be reassuring to know the system is aware of us. We live in Wales, perhaps different parts of the country are going out at different times. Take care everyone

Rare diseases are likely to be missed also many GP medication lists maybe unaware if you are on different medications e.g. biologics in hospital etc . You can access the information on line. I wouldn't bother your GP unless you really need to try to.look on line or get a friend to.

I did wonder. Many thanks for clearing that up for me.

I'm one of the lucky ones who came off immunosuppressants 2 years ago and remained in remission. I can't get off prednisolone but I'm only on 5mg daily. I'm following government guidelines though. You can't be complacent. The risk is high for everyone.

Do hope you and your family and everyone on here remains safe and keeps well.

Thanks again Webbyj

lismacb
lismacb
in reply to ludo

Not had anything yet either. MPA with renal involvement, prednisone 5mg and 6 monthly Rituximab. Unfortunately getting a letter for me is crucial. It’s the difference between being allowed of work with sick pay, going it alone on SSP or going back to work in a factory where social distancing is nigh on impossible. Fingers crossed that letter comes soon.

ludo
ludo
in reply to lismacb

Fingers crossed indeed. Really hope you get that letter soon.

Can you take sick leave until you do? I'm sure your in the high risk category.

Take care. Hope you remain well

lismacb
lismacb
in reply to ludo

Hi. Currently at home but only because my shift pattern has me rota’d off anyway. Watching the post on tenterhooks. Really hoping the letter comes as company will only allow me to take holidays or unpaid leave to self isolate if it doesn’t. Can’t really survive on no pay for 12 weeks so will be forced back to work. Scary times. Hope you’re keeping well.

ludo
ludo
in reply to lismacb

Oh gosh. Really hope that letter comes through for you.

Good Luck. Hope you stay safe and well

lismacb
lismacb
in reply to ludo

Thanks, you too.

Hi, I have Wegeners and have been in remission for over a year. I have been off all forms of immunosuppressant during that time. My consultant has me take an antibiotic every two days as a preventative and that is the only medication I am currently on for vasculitis. I received the NHS text on Monday afternoon. There doesn't seem to be any rhyme or reason to it?!

I too have MPA and vasculitis but I’ve had no notification either.

Webbyj
Webbyj
in reply to Bowlsjack

Strange isn’t it? Hope your well

Bowlsjack
Bowlsjack
in reply to Webbyj

I'm okay but concerned that I have to attend hospital for chemo sessions. The nurse comes to my house to take blood....

Webbyj
Webbyj
in reply to Bowlsjack

I would think that the hospital will make sure you are shielded as much as possible. Have you booked Hospital transport?

I received a text on Monday late afternoon. Take care and stay safe everyone!

lismacb
lismacb
in reply to IPS70

Hi. Do you mind if I ask what meds you are on? Just trying to judge whether I will too? Looking at the criteria I think I should but who knows? My GP has not been great but hospital amazing. I don’t know which of these will be sending letter.

Suzym2u
Suzym2uModerator

Not everyone with Vasculitis will receive the letter or txt...some patients records will not be up to date... sadly....you can self register as a vulnerable person here gov.uk/coronavirus-extremel...

Friday now, and I’ve still not had mine. I have CNSV and am taking Mycophenolate and 15mgs steroids. I have diabetes as well, so am definitely in the high to very high risk category. I had to ring the GP’s Surgery today about my fortnightly blood test next week, so I asked about shielding and was told that the letter/text does not come from them. I’ve self registered as Suzy suggests but am still worried that I’ve been overlooked. Again! Story of my life!

Webbyj
Webbyj
in reply to woollysox

I still haven’t one either 🙄

Do we smell?!

Webbyj
Webbyj
in reply to woollysox

I guess so cos I didn’t receive email from HMRC for self employed either but my hubby got his first thing this morning!! Perhaps I’m invisible??

valfarn27
valfarn27
in reply to Webbyj

I'm invisible too. My husband has less wrong with him, but he got one and I didn't 🙃. I meet a lot of the criteria. I think they are getting it wrong but at least we know what to do to protect ourselves.

I do sometimes wonder whether I kicked the bucket after all those strokes 5 years ago and just haven’t cottoned on yet! 👻 That would explain a lot!!

Webbyj
Webbyj
in reply to woollysox

🤣🤣

I'm on 2 immunosuporessant drugs and havnt had a letter. dont worry about it. I know lots of people havnt who should of got one

I have EGPA and asthma and on methotrexate and prednisolone so should be on the list . Using the BSR score as well I would definitely fit in the shielded category but I haven’t received anything .

I contacted my GP surgery who were fairly dismissive saying it was nothing to do with them and to contact NHS England despite the fact NHS England have written to GP’s and specialists in help identifying those not captured by central data sets.

My concern is that if I am not captured on the list then that may effect urgent care or support if needed , including medicine or food supplies. My respiratory and rheumatology consultants both advised I was high risk and I was issued a rescue pack of inhalers and increased prednisone and a standby course of anti biotics so it’s frustrating and worrying that my GP surgery doesn’t seem to be bothered about patients not captured by central data sets.

Webbyj
Webbyj
in reply to JGM1

Crazy isn’t it? My son had an nhs letter but no rescue pack?

Hi Everyone, I haven't logged on to this site in quite a while, really don't know why as always so much support given and so nice to know we're not alone.. I too haven't received a text or letter and being on rituximab and prednisolone thought I would, have been staying at home anyway but was really hoping to be able to get some help getting supplies, have registered as a vulnerable person but not heard anything yet so fingers crossed..

Take care everyone, keep safe and lets hope we all get some support

Jenny

lismacb
lismacb
in reply to Jenny14

Hi Jenny. I’m same, last Rituximab end November. Have not heard anything from NHS England so sent a message through Patient View and got a phone call from my consultant on Thursday. He said not everyone who has had immuno suppression on day case is picked up straight away but he advised I was part of the at risk group and sent me a letter advising that to show to work. If you’re on same meds (prednisone and Rituximab) you will also be high risk. I guess the letters from NHS England will appear at some point.

Stay safe,

Lisa.

Jenny14
Jenny14
in reply to lismacb

Hi Lisa

Thanks for that, I think if I don't get a letter tomorrow I'll contact my GP, really worried about how I'll get food, just spent my third night in a row queuing from midnight on tesco's site trying and failing to get a slot when they are released, not long since I've had my last rituximab and really don't want to out shopping. I'm so glad you've got a letter for your work, I do hope you can stay at home now and be safe. Take care Jenny

vivdunstan
vivdunstanAdministrator

For people in Scotland the task of identifying folks for shielding is ongoing, and letters are expected to arrive in the coming week. Here is a link to a letter the Scottish Chief Medical Officer sent out to GPs on Thursday 26th March:

sehd.scot.nhs.uk/publicatio...

This includes the criteria being used to identify patients, including immunosuppressed ones, and also includes the text of the letter that will be sent to patients.

Scots who receive the letter will be able to get extra help with food and medications etc. This can be initiated - once you have your letter - by texting a specific number with your CHI reference number (which you will get with the letter - I know mine off by heart after 25+ years of cerebral vasculitis!). Alternatively you can arrange this help by phone.

I'm quite annoyed that the letters are taking this long to come out. Many people will have needed help sooner. And Scots can't sign up for the same facility as English patients, which some supermarkets have used initially as their default method for identifying vulnerable people ...

Northern Ireland and Wales are also handling their letters separately.

But yup, I haven't had my letter yet, but expect it, hopefully, early this coming week.

Hello, l have vasculitis, asthma, and l'm not on immune suppressing drugs for 3 years now and received my letter on Friday; l'm sure yours will turn up soon.

I would have thought if anyone ticked the list it would have been you. Cardiac and lung issues plus Vasculitis. I hope it comes soon. All best

Webbyj
Webbyj
in reply to 2534

Still nothing! Hope everyone else is doing ok and trying not to worry too much

They don’t seem to be inclusive fo they? Access to data? I have vasculitis, just stopped mycophenalate , about to have 2 nd Rituximab infusion, on Prednisolone and have chronic lung probs- no letter either!

Webbyj
Webbyj
in reply to vivavida

I just don’t understand it 🥺

vivavida
vivavida
in reply to Webbyj

Me neither!! I think it must be overwhelming paperwork related or inaccurate data?

JGM1
JGM1
in reply to vivavida

Madness isn’t it . I have today been told by Rheumatology and my GP I am in the category to be shielded but neither seem to think they have to update NHS England to be added . They both think each other should be doing it then threw in respiratory as well as I am also under that department . So a classic case or everyone thinking someone else is doing it which means nobody probably will .

They’ve offered me a letter for work saying I have to isolate for 12 weeks it but I had to retire due to ill health in November so that doesn’t help !

vivavida
vivavida
in reply to JGM1

Yes I think you’re right- coordination!

I had a letter from my Vasculitis clinic today including a diagram explaining risk, given conditions. I come out as high risk and therefore told to ‘shield’ under guidelines- basically- conditions of letter.

Did you register?

JGM1
JGM1
in reply to vivavida

I have registered on the Gov.uk site but haven’t had anything in response . As you had to answer Y/N to having a letter I wondered if I’d be rejected as I had to answer no.

vivavida
vivavida
in reply to JGM1

Yes me too- sort of Catch 22! No I don’t think so- I think they haven’t ‘caught’ everyone yet! I’m an optimist !

JGM1
JGM1
in reply to vivavida

Good luck ! I know they’re busy just found it frustrating that the GP hasn’t switched on to the fact they are supposed to helping update the list not just agree I should be on it and shrug their shoulders .

vivavida
vivavida
in reply to JGM1

Yes true- maybe I’ll hassle GP surgery again. Message was ‘ we all agree you should be locked down for 12 wks!’ Not exactly official! Good luck to you too- comforting to know there we are not the only ones!

Any luck with letters? I still have not received. I would just like to have access to online shopping priority! Any idea who to hassle? Addenbrookes sent helpful self identification diagram but that doesn’t get me a Sainsbury slot!!

Nope, still not received the letter either. Have tried to follow at the GP’s 3 times but can’t get past the receptionists who all swear blind that it has nothing to do with them!

JGM1
JGM1
in reply to woollysox

I’m exactly the same ,I’ve now had it confirmed by the GP, rheumatology and respiratory that I am in the extremely vulnerable group but none of them seem to think they have to update the NHS England list . The GP even sent me a text saying he was surprised I hadn’t received a letter totally missing the point that he is supposed to review it and update . I am at the point of giving up chasing . I like others are not doing it just to get a letter , it’s the support that we may be denied if not officially recognised that concerns me .

I’ve just this moment received a text from Gov.UK confirming that I registered as clinically vulnerable but have not received a letter from the NHS to confirm. They (the gov.) will share my details with the NHS and if they agree, they’ll inform my GP.

Great; at least something’s happening, but isn’t this the wrong way round? And shouldn’t my GP know that I’m not well after 5 years?

JGM1
JGM1
in reply to woollysox

Yep got the same so maybe something will happen when they catch up but you’re right it should be the other way round .

vivavida
vivavida
in reply to JGM1

I called surgery today- told same . Then someone I know called me back and said that GP surgeries given technology from today to issue letters. She did mine.

Also like you received same text ( after registering 3 times!!) tried to call helpline- did not recognise my definitely right NHS number and hung up!!!!

JGM1
JGM1
in reply to vivavida

At least you got somewhere at last with your GP ! Well done and take care

vivavida
vivavida
in reply to JGM1

How’s it going? Turns out my surgery generated the letter- not linked to Gov database- so actually no progress!! Still no letter.

Webbyj
Webbyj
in reply to vivavida

i called my GP last week and was told rather abruptly that because i am not on pred or aza anymore (off treatment due to side effects) i am considered to be the same risk as everyone else. Not sure how this is true considering i have renal involvement and still under nephrologist and also cardiologist for heart issues following heart attack in November. I would have thought that the risk if i was to get Covid19 would take me out of remission and back to square 1, where i started this journey 3 years ago. The only reason i am concerned is because my husband is having to go to the supermarkets to get shopping and therefore every time he goes out he is rising exposure to the virus. (no longer able to get click and collect or delivery as all booked up weeks in advance). With my son also living here with asthma (he received both govt text and letter) he worries that he is not protecting us. i feel that my gp surgery has really let me down and becoming more and more anxious every day.

I am sorry to sound so 'down'. its not like me at all i'm usually very upbeat and optimistic.

vivavida
vivavida
in reply to Webbyj

Oh I totally understand you’re feeling down and anxious. It’s such a stressful time anyway isn’t it. I just do not understand the hit and miss letter output! Could your son register for online shopping as he has letter?

It’s a bit difficult to be upbeat! Be kind to yourself!

Warm wishes and stay safe

JGM1
JGM1
in reply to vivavida

Same for me I think , the shielding letter arrived from the GP surgery on 2/4 but I’m not sure they’ve linked it up . I have seen the latest letter sent to GP’s asking them to update etc. Also to check the people who have registered online separately.It’s available freely on NHS Digital.

I did get an email from Asda though offering me delivery slots so something has worked , I think that was as a result of registering online with Gov.uk.

vivavida
vivavida
in reply to JGM1

Oh good- I’m glad you are getting somewhere. Were you registered with Asda before this?

My registration had been acknowledged by text but that’s it! Still relying on friends to shop.

I had infusion at Addenbrookes on Friday and did a very quick. ‘Supermarket Sweep’ !

Take care!

Webbyj
Webbyj
in reply to JGM1

I tried to register with Gov.uk but it’s only interested in meds. As I’m off them now it’s not relevant. Unless I got that wrong?

vivavida
vivavida
in reply to Webbyj

Quite sure there isn’t a question about meds specifically.

Webbyj
Webbyj
in reply to vivavida

Oh ok I’ll look again! Thanks

I was registered with Asda before but only just as it was my wife that was registered for our normal shop but I thought I’d better register myself to have a direct link if they did cross reference so it must have worked .

I can’t remember the exact questions now on the Gov.uk site I don’t think they asked about specific meds though it was just if you felt you were in the categories they outlined then provide your NHS no. so they could check with the NHS and what help you needed such as with shopping or daily activities .

You may also like...