Received shielding letter, unsure why.

[StinkyTofu]

I'm currently very confused and unsure. I have what I thought was mild asthma. I've never had an attack, never been admitted to hospital or given oxygen. My symptoms are well controlled during the day, however I have been seeing a specialist as I wake during the night feeling breathless. I had several tests and have tried several different inhalers.

My understanding was that the tests showed no problems at all and it appears the night-time issues are more than likely caused by GERD, not my asthma.

I ended up being put on Flutiform but to be honest it seems to work no better than the Seretide I was on previously in that I was already fine during the day and the night-time symptoms did not change. They are now getting better as I'm addressing the GERD.

So... I'm just totally confused why I have been told to shield for 12 weeks. I don't seem to fit in to the categories at all. All I can think, and this seems a stretch, is that last January when I had my asthma check-up the practice nurse basically wouldn't let me leave without prescribing tiotropium. I tried to say no, partly because I'd had it before with no effect and partly because I was being seen by the specialist so didn't want to start trying new things when he was working through a process at the time. However, she was like a doorstep salesman who wouldn't remove their foot, practically gave me no option. To just get out of there I agreed, got one prescription but never used it and this year when I had a review (with a Doctor this time) just told them to remove it from my repeat.

Could it just be that the records haven't been updated and they think I am still taking it? Or could the hospital referral be the cause even though it showed my asthma was under control?

I've got to say it felt like I was having a panic attack when I read it. I've only been leaving the house twice a week and being extra careful and it's amazing the benefit those short trips out have had on my mental health. The idea of losing that plus having to close down my online business as I can't even leave the house to go to the post office is difficult to come to terms with.

I'd find it easier if I was expecting it, but I was not expecting this to happen when my asthma is so mild. I've not even started thinking about how I get food - I've been doing a bi-weekly supermarket shop as there is no delivery availability near us.

[Hidden]

Well the Deputy CMO did say, when the shielding concept was announced, that nhs England would be erring on the side of caution & some people might be surprised to be included. A relative of mine with mild asthma, ie controlled by a low dose steroid inhaler & occasional ventolin, has been included. But he thinks this is because he’s had several courses of oral steroids in the last year (his own fault, as he keeps trying to stop the steroid inhaler, against advice, leading to flare ups!)

Shielding is advisory rather than compulsory anyway so you can ignore it if you wish. Or phone your gp & ask if he/she agrees you shouldn’t be on the list? There’s no advantage, apart from possible priority for online shopping, and you can’t get deliveries anyway

[StinkyTofu in reply to Hidden]

One concern I have is long-term. I'm sure these lists will end up with the various insurance companies and I'm worried I'll suddenly struggle to get travel and mortgage protection insurance as I'll be classed as high risk.

[Hidden in reply to StinkyTofu]

Yes, not to mention triaging if you need O2 or C-Pap, or god forbid a ventilator! You’re perfectly entitled to get yourself taken off the list though, just notify your GP. It mentions this somewhere in the paperwork but I can’t find it right now

[Lysistrata Administrator Community Ambassador in reply to Hidden]

Just wanted to respond to this: obviously StinkyTofu should get themselves taken off the list if they feel it's not needed, but I don't think being on it means you won't get a ventilator/CPAP/oxygen etc if you are unlucky enough to get that bad.

I doubt the clinicians treating would even know who is or isn't being told to shield, and would think they assess individually at the time. I don't think that severe asthma alone or even a tick box of other conditions is automatically going to make them triage someone as not suitable even for oxygen or CPAP.

At the moment thankfully they are not having to make those decisions between patients. Currently I expect they would consider in terms of an individual's own best interests (like they would anyway, eg if you are in your 90s and have advanced cancer I think they would always be cautious about aggressive treatment in any situation).

[Hidden in reply to Lysistrata]

Yes I expect you’re right & apologies if I worried ST, it was a bit of a cynical remark. Actually a medic friend, and a nurse relative, have echoed you in saying each patient is treated entirely on how they present. I don’t think I’d survive ventilation, but I’d like a chance! However IF there was a shortage & it was between me & maybe a parent of young children, with a better chance of recovery, it’d be a no brainer. But there appears to be no shortage, I’ve read the new Nightingale hospitals are almost empty, so with luck the situation won’t arise! Anyway I’ve no intention of exposing myself to this virus & am being ultra careful

[CRP386]

Sounds like the letter has come as big shock and agree not entirely sure what could have triggered it, perhaps it was the NHS being overly cautious. You dont mention taking regular and continuous oral steroids which would prompt a letter. It doesnt sound like it was the Tio as NHS Digital used prescribing data from July last year to compile the shielded person list. You have every right to be asked to be removed by your GP/Hospital Consultant, as stated by NHS Digital. The letter is for guidance only and is not compulsory.

[tigga61 in reply to CRP386]

going by the list of meds flutiform is a steroid inhaler, and enough to put you in the at risk category.

[CRP386 in reply to tigga61]

It depends on the dose. High dose was initially stated by Asthma UK. Guidance issued by Asthma UK on 2 April was that high dose for Flutiform K and Flutiform MDI inhalers were considered to be 250 mcg per day or higher.

[StinkyTofu in reply to CRP386]

Mine is 250/10, 2 x 2 twice a day. I'm sure based on the recent diagnosis of GERD as the likely source of my night-time symptoms that I don't actually need a dose that high or even to be on Flutiform at all. Other than at night my asthma was well controlled on Seretide.

[StinkyTofu in reply to tigga61]

The letter says if you are on Flutiform *and* another treatment you *may* need shielding. However, if they are using old prescription data then the tiotropium will be on my repeat list so it may be that. I've never taken a non-inhaler steroid regularly, not sure if I've taken them at all to be honest.

[Poobah]

We know that the process of selecting patients that should be in the sheilding group was not perfect and errors were made. If you feel comfortable going out, practicing strict social distancing, then go for it.

We now have had 3 confirmed Covid-19 cases in our family, one member who was shielding at the time. It was another family member who briefly visited the shielding household who passed it on unknowingly. And it was the briefest of visits, dropping something off. We are learning how easily transmitted this virus is.

I should also say that the shielding relative has "mild" symptoms. I wouldn't describe them as mild and they are in week four and so poorly/exhausted. A four day stay in hospital for IV antibiotics and oxygen helped prevent a secondary bacterial infection and low oxygen levels (88).

All I'd say is ensure that you take all precautions when out shopping and treat everything that comes into your home as contaminated. It was my birthday this week but I didn't open cards or presents for 72 hours. Shopping is wiped down, veggies washed in soapy water, or items left for a couple of days before touching again. My hands are so dry from repeated washing.

With the weather being so nice, going out for a walk every day is a real treat and so good for one's wellbeing. Just do it where you can be alone and well protected. Even Captn Tom Moore is going for a daily walk.

Stay safe and keep well.

[Hidden]

I was informed that I was high risk but then I had a phone call saying that I mild risk. For some reason I was informed that I was high risk when it was a mistake. I was informed this by my doctor's. Sometimes you can get the wrong information like I did. But I got advised to be as careful as I can be with what is going on

[Mark-f]

Hi ... if your confused or unsure that you are on the 12 week shielding or at risk category I would discuss with doctor or specialist as I have heard of people being taken off the list lately, I assume the nhs and government bodies have aired on the site of caution .. but all that aside the letter is advice only and if you choose to ignore it then that’s ultimately your choice ... my asthma is classified as servere, I’ve been on oral steroids continuously for 4 years at 20mg daily also been on various Biological treatments over the last few years ...

I am 4 weeks in to the shielding and it’s so boring !

Good luck

[Taztarr]

It's more likely to be because you're on a specialist's books.

[CRP386 in reply to Taztarr]

Not true - my Asthma is managed by hospital specialists and I've fallen through the cracks of this letter process. My GP has added me to the SPL (sheilded persons list).

[Taztarr in reply to CRP386]

That's unlucky for you. I've just received my shielding letter but probably not because of my asthma , which is mild, or my GP. In the past 6 months I have had emergency surgery to remove a bowel tumour, chemo treatment and two stays in ICU. Although that makes me very vulnerable it is all behind me and I am no longer on oncology or intensive care books. Therefore, the only conceivable reason I received the letter is because I am still on my surgeon's books for post operative follow up. Individual cases will vary.

[Dilly1960]

Hey

I’d been told to shield for 12 weeks via text and also told by the receptionist when I rang to enquire. Spoke to my Doctor on Friday about an unrelated problem and he said I should go for exercise outside as it’s effecting me mentally and physically. My asthma is considered a risk but not now a high risk. He told me NOT to go to the shops and walk somewhere quiet. Wash hands and be very aware of distancing So I went out for the first time in over 4 weeks on Friday and it was brilliant. At fist it was a bit scary and very strange but then I Felt so happy to be in fresh air and walking. He told me to drive to places where hopefully there will be fewer people. I live by the sea and everyone walks there so have been taking my self to the downs and forests that surround me. I think we are going to get a great deal of diagnosis for depression after this whic is also worrying. I advise you to call your docs and ask him to see if you can go out and reassure you. Best thing I’ve done this week. Hurrrah 😀🎉🎉

[EmmaF91 Community Ambassador]

If you don’t feel like you need to shield but have been sent the letter call your GP and discuss it with them. All asthmatics should be following stricter social distancing but you don’t necessarily need to be shielding so if you’ve been told to shield discuss with them their reasoning

[StinkyTofu in reply to EmmaF91]

I've been very careful on distancing anyway. However, you raise the one big gripe I have with the NHS which is contact. I have a significant speech impediment which makes using the phone very difficult. However, almost nowhere gives any other option. My GP is the only one with some limited options such as repeats and limited appointment booking online.

[EmmaF91 Community Ambassador in reply to StinkyTofu]

Ugh. Yeah. And it’s not just speech impediments that struggle with that and get little adjustments for. ASD and mutism spring to mind straight away. And you shouldn’t have to get others to talk for you for things like this...

[Singinglouder in reply to StinkyTofu]

Since the crisis started, a lot of gp surgeries have an econsult button on their websites - you type your query, and they promise to get back to you, I think by the end of the next working day. Worth checking - mine certainly didn’t have it before, but does now.

[StinkyTofu in reply to Singinglouder]

Unfortunately not... They now have a facebook page but for obvious reasons that's not a way to discuss medical issues.

I guess online contact can lead to more people attempted to get in touch, but it's a godsend for those like me who really struggle to use the phone.

[Singinglouder in reply to StinkyTofu]

That’s a shame - I’ve seen a couple of things that imply econsult is nationwide, but it doesn’t seem to be. I don’t know how you feel about this, but could you use the text-to-speech service?

[Js706]

If you think you shouldn’t have received the letter then the advice from the government is to ring your GP to discuss it with them so they can remove you from the list if you both agree it was a mistake 😊

A lot of people were identified by a computer programme so it’s bound to have missed some people/included extra as it was all done so quickly!

[SheilaC]

If you have had a letter, there should be details of how to get a government food parcel. I had a text, two letters and then got a phone call asking if I was ok for food. I said yes as my husband is allowed to go to the shops. No he isn't she said, apply for a food parcel and then you will be offered a supermarket delivery slot. I did and we had an email from Asda offering a delivery slot. I didn't go out for five weeks but started to feel quite weak so now we go our late at night for a local walk. Nobody comes near us and we don't touch anything, take out shoes off as soon as we come in and have a wash.

[StinkyTofu in reply to SheilaC]

There is nothing about food parcels, it just says to use delivery services or ask neighbours for help. As the youngest of our neighbours are in their late 70s (I'm mid 40s) that doesn't seem such of a good idea.

The letter I have does suggest the rest of the household can go out but if they do so need to be careful and stay away from you as well. Hardly going to help...

[twinkly29]

Agree about speaking to GP. Sounds like they may have gone on meds on repeat list but obviously if you're not taking them as don't need them then it's different.

The original guidance included specific meds with doses etc. But now, as you say, it's steroid inhaler PLUS another med PLUS daily oral steroids (or frequent courses in a specific timeframe). The original list of inhalers etc isn't the current guidance (probably because a lot of people, not you, just looked at an inhaler name and decided they had severe asthma and got in a knot about it!)

[Nutzs47]

My friends wife is a practice manager and has told him that there have a list of people who have been told to shield by the NHS who shouldn’t be and as many again that should be shielding but haven’t been told to I also know 2 people who were told to shield by their rheumatologist but haven’t received a letter either

[Taima in reply to Nutzs47]

I have been getting 3 hours sleep a night an d *literally* constant coughing during the day. 8 straight hours without so much as 10 seconds between coughing fits, vomiting, wheezing so much I sound like a squeaky toy and a dog barking. I threw up on the floor twice at work because I coughed as I had bent over. Feeling very weak and shaky, foggy headed. Sore. Nope no shielding letter and still in close proximity to colleagues.

[Nutzs47 in reply to Taima]

To be honest if you are that bad you need to see a dr or go to a/e hun as you prob need other meds

[Taima]

I’ve broken down in tears describing these symptoms in the doctors office several times on the past in person and ranted about it via email. I have had a really unstable life like at one point I had to go somewhere else to stay two to three times a week or opposite unable to leave the house for months due to illness then lost my home so now working full time again now unable to take time off even though it is killing me (I have several other conditions to deal with). I also have no transport to get to the doctor in a rural area (I live at work). I did go to an emergency appointment 2 months ago and they gave me a one time course of prednisolone because I literally could not get enough air in to speak at all but no discussion on how I am meant to manage this recurring situation long term (Asthma + allergies + GERD). Technically I am not even asthmatic because a diagnosis is not on my record when I requested them to try to apply for PIP/ESA and they asked me confused ‘do you even have asthma?’ when I was there wheezing and gasping for air in front of them as they must have looked at my history (new GP after finally been able to settle in once place for the first time in two years).

[StinkyTofu]

Just a quick update, it looks like they sent the letter in error.

They wrote to all registered asthma patients with a letter containing the new advice and guidance, looks like someone got their wires crossed and sent this out with letters advising they should shield as well, rather then just sending those to people who actually needed to.

Panic over!