Shielding and self injecting - Asthma UK communi...

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Shielding and self injecting

EmmaF91
EmmaF91Community Ambassador

Hey guys

I’ve officially just been told I need to be shielding (via a phone call from my local hospital lead asthma nurse). As I’m on benralizumab injections (due 4/4) she also informed me I will be doing it from home from now on. As she put it; ‘Ordinarily we’d get you in to demonstrate you know how to do it. This is not ordinary times...’

I’ve been told they are auto injectors, similar to an epipen, so hopefully it will come with easy to follow directions ‘stab, click, hold, remove’ etc 😅 (if not I have an ex-nurse friend who has offered to stab me if needs be 😂)

So she’s setting up the system so it can be delivered to me (and then all I have to do is leave it in fridge until it’s due)

Hopefully this will all work out, and in the long run, once this is over, I should be able to avoid the 2-monthly appts to be stabbed (3hr round trip costing £12+ via public transport each time...)

Now the worry is finances as a self employed individual who can’t work....

26 Replies
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Take care Emma x

EmmaF91
EmmaF91Community Ambassador in reply to LDloveslattecoffe

And you

Based on the Asthma UK guidance it's likely will have to shield/isolate but until told officially I'm doing distancing properly x

I am sorry the government have not offered anyhing concrete to self employed people so far! There is clearly pressure on them to deal with it. May it come through sooner rather than later!

EmmaF91
EmmaF91Community Ambassador in reply to Wheezycat

Thanks. So far I have fallen through every loophole

1 - I have savings that I inherited so make a deposit on a house/flat whatever. Because I haven’t spent I cannot get the old ESA or UC

2 - I rent (as I have not spent my deposit yet 🤦‍♀️) so no mortgage relief that i can claim and also no rent hold, so potentially expected to pay it all. Only benefit atm is I can’t be evicted...

3 - osteopaths are not covered in the business loans

4 - can’t get ‘new’ ESA as only been working 1 year so having been contributing for 2-3 years... (however my dad has just told me to check gateway as apparently uni years may count 🤞🏻🤞🏻🤞🏻)

So hoping the government has something up their sleeve and will also apply for PIP (something I’m pretty sure I’m eligible for but have avoided claiming so far...)

Wheezycat
Wheezycat in reply to EmmaF91

Good luck! I and other, too, could sign every petition regarding this that I come across. It needs changing! In my view there should be 80% of your normal income, or sick pay. Or something. You need it, along with many others!

I was shown the auto injectors last week at my first appointment for Benralizumab. It is simple you hold the skin, press the pen to the skin, it will

Click when it starts and the click when it has finished. Count to 10 and your done!

I’m not sure what’s going to happen with me as I’ve only had my first injection so I’m unsure weather I will

Be going for my second one or not - the other problem I’ve got is shielding. I have to return to work mid April - I’ve been off sick for six months with asthma out of control - now it’s being control much better I am due back to work. If I don’t go back I will drop to half pay and that won’t even cover paying the rent let alone all the other bills that need paying it’s horrible to have a to make a choice between health or my home

EmmaF91
EmmaF91Community Ambassador in reply to HoppyNurse

It’s worth talking to your workplace HR (and getting your union behind you). My brothers in the police and on an immunosuppressive MAB for crohns. He’s been told he has the 3 months full pay and it won’t affect his Bradford score. Assuming the NHS works on something similar... this is government advice and guidelines after all and your team will want you to follow it.

Hopefully the gov will have something in place for renters etc soon, and remember rn they can’t evict you so worth contacting them as it is. I currently have 0 income so am very 😬😬

Hopefully your workplace will be understanding 🤞🏻🤞🏻good luck. And be sensible. A new place you can find, a new job you can get, a debt can be repaid but your life cannot be replaced. Sending you hugs and support

HoppyNurse
HoppyNurse in reply to EmmaF91

So I’ve bitten the bullet and emailed in saying following the guidance from gov.uk that i would not be returning to work for the next 12 weeks as I am classed as highly vulnerable. I’ll discuss with HR and OH in the weeks

I turns out as I’ve been off sick for the past 5 1/2 month as I’ve got lots of annual leave that they are carrying over. Therefor now on annual leave until 3rd of May. Then who know after that!

Just seen this, are you in a union? Do you have occupational health department?

Hi, I’ve been doing Mepo myself for a few months, good instructions and a video online, you’ll be fine. I’ve not had a text yet though expecting one... keep well x

All the best Emma. It's crazy that self employed aren't also receiving equal support as folk on PAYE. I've signed a petition today re this. I suspect it's because they have to work out how to arrange the process with HMRC which will be more complicated than the PAYE system - 2 different computer software systems. Crossing everything that an announcement is imminent.

Hi Emma. I will also have to do the same. I think the injections are like epipens so I think u just click the injection and when it’s finished it clicks and u remove it. I was wondering if they supply a sharps box or something for the used injection.

dawnhaycock
dawnhaycock in reply to Denae011

I have been advised that the injection will be sent home to be self administered but awaiting further detail.

I understand that the needle will go back into the case automatically so no need for a sharps box.

Good luck all

I was on pens with a built in needle recently for my diabetes. Had to take the used pens to the surgery for disposal (they wouldn’t fit in my sharps box), and when I stopped them halfway through a box I couldn’t return the unused ones to the pharmacy cos of the needles, they had to go to the surgery too. No trouble injecting them, tho!

That’s interesting - I’ve been asked to go into the hospital on Thursday to be shown in person how to self-administer my injections (for Xolair) - they’ll then give me a supply to take away with me.

I’ll be going in wrapped up hazmat style...

Keithr24
Keithr24 in reply to Mogget

Just wondering what will happen with mine in a couple of weeks. Time will tell....... Don't know how I feel about having to go to the hospital, especially when just been told to not go out.

Hope it goes well

Mogget
Mogget in reply to Keithr24

Indeed, it’s conflicting! I raised my concerns but was assured that most clinics are now cancelled so I shouldn’t mix with many people in the waiting areas. I’ll be standing miles away if there is anyone!

Hope everything goes well for you too 😊

Good luck Emma. Hope things work out for you on all fronts 🤞🏻🤞🏻Pam x

No. Your friend can’t come near you. Read asthma uk on shielding. I’m on that. I can’t even take my dogs for walks.

EmmaF91
EmmaF91Community Ambassador in reply to Abc64

For medical reasons social contact is allowed. My asthma team were actually reassured when I told them that if I couldn’t figure it out/build the confidence to do my first one without any instruction (as usually you are taught how to do it), that I had an ex-nurse friend who had volunteered to assist. Social contact for 5 mins with someone in my own home is better than having to travel 45mins each way to get it done/be taught in the hospital where the risk is a lot higher... esp as I’d have to get a lift anyway. And benra isn’t a drug that I can stop and still remain healthy without...

I am hoping it won’t be needed and that I’ll understand the logistics and be able to push through the initial fear.

I hope that explains what I meant a bit better for you

Don't worry, self injecting is very simple. The instruction leaflet that comes with the injection explains very clearly , with the aid of diagrams, what you should do. Good luck👍

I have been self-administering my omalizumab auto injectors since December and have found it to be super easy. Note--I am not giving medical advice but I'll tell you what my personal experience has been.

I wipe my belly with rubbing alcohol then pinch the fat about two inches to the side of my belly button. I stick in the needle and it goes in a certain amount til it kind of stops on its own then I press down the plunger and when it gets to the bottom, it automatically pops out. Then I do the other shot on the other side of my belly button.

Good luck with the shielding! Take good care.

EmmaF91
EmmaF91Community Ambassador in reply to hilary39

Thanks. I’m probs going to go the thigh route if that’s an option 😅. Just love how benra was only just starting to contemplate maybe doing self-administration in the UK and then BAM we’re all doing it 😅. Also lolling cause in my area I was the first to get benra, and apparently I’m going to be the first to self-administer it too 😅

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