What does this mean in practical terms?

[alexanderosman]

I've had poor asthma control for 3 months now and am still struggling to get doctors to listen to me. I also made a complaint through PALs following my A&E visit and have just received the response. Unfortunately, I usually present as having normal oxygen sats and no wheeze, so can find it difficult to get treatment.

The sign of a severe attack that I usually do have is not being able to speak in full sentences, but in the response to my complaint, it says that the doctor recorded that I was able to do this when I attended A&E. I didn't feel that I was and my mum (who took me) said it was obvious to her that I couldn't.

So my question is - what does 'able to speak in full sentences' actually mean?

Is being able to get out a sentence by taking a deep breath, speaking very quickly, then gasping for breath 'able to speak in full sentences'? Or does it mean that you can speak pretty normally without having to struggle for breath? Or that you physically couldn't get out 5 words in one breath however hard you tried?

[EmmaF91 Community Ambassador]

Technically it should be unable to speak normally, with a normal breathing pattern, not needing to rush through or take extra breathes to finish a normal length (not short) sentence. No gasping at the end should be required, you shouldn’t need to ‘race your breath’. I have learnt to not rush as docs understand ‘needing to breathe every few words’ as a sign of struggling more than they recognise rushing through as an issue. I want to rush, but I try to keep normal speed then they can hear it better. The guidelines are ‘unable to complete a sentence in one breath’ - if you speed through you have completed the sentence even though you end up really struggling.

However lots of docs misinterpret this sign and take it basically as a cognitive function. Can we think of full sentences? Can we complete a sentence without forgetting what we are saying? etc etc rather than ‘do they sound like we would expect for their age when they talk?’

The other things to look for are whether you have other signs of severe attacks ( brit-thoracic.org.uk/docume... page 15) as they can support your case when you need to. On top of this I tend to say if you can’t eat, talk or walk normally, or you don’t feel safe to sleep you are also all signs/symptoms of severe issues.

Hope this help

[alexanderosman in reply to EmmaF91]

Thanks, that's what I thought. Why don't doctors stick to this though? It's so frustrating. I was having to gasp after every few words when I went to A&E and was nowhere near talking normally, but it's recorded in my notes that I was able to speak in full sentences.I've been struggling with talking on and off since the beginning of December (and walking, eating and sleeping although walking and eating have improved in the last couple of weeks) but can't get my GP to take it seriously and don't really know where else to go with it. I've spoken to the AUK nurses and they've been great, but I can't get anywhere with my GP.

[Lysistrata Administrator Community Ambassador in reply to EmmaF91]

I agree with Emma. I would add that while the full guidelines specify that it's about being able to finish the sentence in one breath, many of the 'quick reference' guidelines and tables ironically shorten this sentence to 'able to speak in sentences' or 'uses sentences/uses phrases/uses words' - and then it gets misinterpreted as a cognitive test or an English test. They really need to find a way to shorten that while keeping the meaning (but then those quick ref guides also make it very unclear that wheeze is not required or all the features are not required because of the way they compress it - that's a whole other can of worms!)

I have definitely been struggling to speak but been told I am talking fine - maybe I need to try Emma's tips on this! I have however been impressed when I hadn't even quite noticed myself and someone has picked it up. Sometimes the AUK nurses notice, and one time the med reg said 'you think you're speaking normally but I can tell you're deliberately making your sentences shorter, that is not a normal way to talk' (she was amazing, my second admission and just SO good at listening and understanding I was not typical!). Have also overheard a report of 'she has staccato speech' in A&E. But sometimes they just will not pick up on it unless it's really obvious and you sound like a cross between Capt Kirk (William Shatner is famous for pausing) and Darth Vader.

Is there another GP you could see? I appreciate it may be difficult at the moment mind you but wondered if you keep seeing the same one and a different one in the practice may be more helpful?

[alexanderosman in reply to Lysistrata]

Thanks, that definitely makes sense. I totally recognise what you said about consciously making sentences shorter because it's hard to talk.My practice has a policy of seeing a named GP, and because I'm autistic I really need to see the same person each time for consistency. The asthma nurse has been quite helpful in some ways, but I find seeing her as well really stressful because they contradict each other, and don't understand why I find that so difficult.

It terrifies me that I'm being under-assessed, because although the attacks I've had in the past haven't escalated after a nebuliser, that's no guarantee that they won't in future, particularly if I continue to be under-treated and not be controlled. I'm basically having to manage things myself by staying still most of the time, which isn't sustainable long term. Also, being autistic I find it hard to communicate when I'm under stress, so I can't advocate for myself, particularly at the moment when no one is allowed to come to appointments/ED with me.

[Lysistrata Administrator Community Ambassador in reply to alexanderosman]

Ahh I see. That's pretty frustrating with the named GP tbh - I feel like they just made that up, since there's a requirement to HAVE a named GP but not to be barred from seeing anyone else (my practice is clear on that). I understand you need consistency, but it would help to have it with a GP who listens!

I struggle to communicate in those situations even without being autistic, so it must be even harder if you are! I have no tips for appointments, but I do find it helpful to write a summary for A and E with all the stuff they want to know and how I present, what helps, previous history, meds etc. I usually give to them at triage now or as soon as they ask me about meds etc or what happened - has a bit at the end I update every time for the current attack. They usually love it and it does help - at least once they've not sent me home because of what I said about my peak flow.

Emma has a template for her version of this that she's happy to share - see this post or just ask her

🙂

healthunlocked.com/asthmauk...

[0101 in reply to Lysistrata]

Thank you too, Lysistrata . I had forgotten I was called Darth Vader at work some years back and a lovely old guy brought me in some honey as I was off work sick. This isn't being picked up at all now but it seems pretty obvious.

[CindyID in reply to Lysistrata]

Wow I just realised this is exactly what I do - i speak in short rushed sentences so I can get the words out in the little breath I have. Will definitely try to focus on more normal sentences next time so it'll be more obvious to medics who've never met me before. Thank you!

[twinkly29]

Have you had covid at all? Long term breathlessness can be related to that but it appears similar to asthma.

Does the GP have any suggestions as to what could be causing it if they don't think it's asthma? Maybe they do think it's asthma, you'd just expect them to do something if they do! If they think asthma but out of their depth they should be referring really. Sorry, I can't remember where you are with all this!

[alexanderosman in reply to twinkly29]

I haven't tested positive for covid, although I did have close contact with someone who tested positive and think it's possible I had it. By the time I developed a cough it was a couple of weeks later and I tested negative. The breathlessness had improved quite a bit last week, although was still having daily symptoms and needing ventolin several times a day. GP changed me to Fostair, which I started last Thursday. Since then have had trouble sleeping and had a couple of attacks that needed multiple puffs of ventolin at night, so I'm thinking maybe the Fostair doesn't work for me (I was on Symbicort before and seemed to be slowly improving but wasn't there yet). I'm definitely not breathless to the same extent I was though. I have periods during the middle of the day when I'm not at all.

[twinkly29 in reply to alexanderosman]

It's very common to need your ventolin more having just changed inhalers as it's like your body has no or very little inhaled steroids while it's building up. It usually takes a couple of weeks to begin to kick in and often about 8 weeks for it for it to be fully effective - so in that time hopefully you'll find you need less ventolin and your symptoms will improve.

If you have had Covid though, it would also be possible to have breathlessness left from that - which isn't asthma itself so might exist despite inhalers helping other asthma symptoms.

These breathing exercises might help if there is any post covid or other breathing pattern breathlessness getting mingled with asthma stuff:

lifeguidehealth.org/player/...

[alexanderosman in reply to twinkly29]

Yes, I understand that a new preventer will take a while to have effect. My concern is that I've been experiencing a level of symptoms that are having a signficant impact on my normal activities, for most of the past two months (with a few days where I was fine at the end of my course of pred). Prior to that, I hardly ever needed ventolin, don't think I had at all in several months. Going from no symptoms to weeks of needing ventolin multiple times every day, struggling to get to sleep/waking up in the night several nights and having several attacks a week just doesn't seem right to me, and although there's been some improvement which is great, it's still far more than I've experienced for about 10 years (apart from during an infection which I also rarely get).

[twinkly29 in reply to alexanderosman]

It must be very frustrating. Each time you (or anyone) try a new medication unfortunately it takes time which is needed of course (trying the meds to find the right ones) but does make it feel like it's not improving.

I know of various people who, like you, were really well controlled and then things changed - sometimes because of an obvious thing, but more often they didn't know why. Like you though, they had a bit of a rubbish time trying to find the right new medication but, once they did, they went back to being well controlled. So it does happen - and hopefully will for you too. But definitely frustrating and difficult where you are now.

[starveycat]

Have a look at the dystonia site on healthy locked. I have asthma as well as vocal chords problems. Sometimes I find it hard to breathe and trying to speak us difficult. Check my breathing on my spirometer all ok then I know it's my vocal chords and

[0101]

Thank you for posting - I've been crying with relief looking through the thread and all the replies.