Guidance for colleagues - brittle asthma

[AimeeCardiff]

Hi all,

I have had awful problems with my asthma since Christmas. I have had two A&E admissions as well as several big attacks that I've just about controlled at home. I saw the consultant privately on Wednesday last week as my GP was too nervous to change any meds/give steroids(!). The consultant, who I previously saw in 2008-10 said that I am currently presenting like a brittle asthmatic, which is different to my usual asthma, and I may also have VCD on top of my asthma in an attack.

He advised that if my inhalers weren't working, I should definitely get to hospital, and as cold is one of my major triggers, it will need to be in an ambulance.

When my attacks are bad, I am not able to speak enough to call 999 myself.

I had put up notices at work to tell people:

•If I’m coming to you looking really unwell and unable to talk, you need to phone 999

•Stay with me and stay calm

•I may well be shaking a lot – don’t worry about that, it is a side effect of my inhaler

There have been several people who have been distressed about this, and my managers are keen to circulate some kind of more formal guidance/support on what to do.

A video was suggested, but it basically showed someone being helped by finding them their inhaler from their bag, and sitting with them whilst they took their inhaler. If I'm asking for help, I am way beyond this, and just need an ambulance to be phoned, and people not to panic to help me stay calm.

Does anyone have any resources that they could share when the guidance is aimed at brittle asthma, and it literally says just phone 999 and don't freak out?

I have registered with the text 999 service, but my ventolin makes me so shaky that I don't know how well I'd be able to text in an emergency, and I feel that having to do this myself would make me more panicked, which also would make my asthma worse

Thanks in advance

[Hidden]

Hi AimeeCardiff

There's some information here specifically for colleagues and friends supporting people with asthma bit.ly/2EH5ZXG

It's not aimed at specifically at people with severe asthma as such but point 3 is knowing what to do in an attack. We also have a useful infographic on our asthma attack page bit.ly/2xvsLej that might be useful to share.

Hope that helps,

Dita

[AimeeCardiff in reply to Hidden]

Thanks Dita - my main concern is I don't want people to wait hoping my inhaler will do something, as I would only be approaching people when it's already escalated (it's better for me to stay calm and quiet by myself trying to get my inhaler to work as much as it can)... I guess I could use it with an addition that this is what I need (like it says in the first link you showed)

[M-D-F]

My next door neighbours have a similar instructions, and they know not to panic for me, and I have explained that once an ambulance has been called, the panic side of my asthma subsides.

If I am out cycling, everyone knows what to do.

Also I tend to get a days warning for a brittle asthma attack when my peak flow sinks below 150, which gives me time to prednisolone my self, get my drugs ready for an admission to hospital.

[AimeeCardiff in reply to M-D-F]

Hi MDF - did you write something down for them or just have a chat? I've done the same thing with my neighbours (2 that are really good), and when I mentioned it, particularly as they'd seen ambulances at the house, they just agreed that they would phone an ambulance if needed. It's how to help people who are worried/hesitant that I'm struggling with

[M-D-F]

No they inquired as what they should do, it's a reciprocal thing one of them is a diabetic.