This is something which has been confusing me for a little while, and more so now!! I frequently get to the point where I know that from an asthma POV I am too ill to visit the GP or call 111 to get an OOH appointment or even advice/reassurance, but not bad enough to go to A&E (I would be by normal and AUK standards - but I would be in hospital every day (even if well by my standards!) if I did). At this point I tend to try and manage at home, until an attack becomes severe enough to need hospital treatment.
I have something called a rightcare plan, which is something the GP has come up with, which 111 and OOH gets, so that if I call I am prioritised in terms of talking to/seeing someone. with this I also have a direct number to the 111 clinicians rather than having to go through the faff of the 111 operators. It states on this my medical history and frequent severe admissions.
I haven't used this service yet, as I feel that if I rang and said ""asthma"" I would get an ambulance regardless of whether I feel as though I need one or not.
This leaves me feeling as though there is a huge grey area .... too ill for 111/OOH but not ill enough for A&E.
This slightly random post is really just to ask if others experience this at all? And what do you do in this situation?
This level of asthma severity is fairly new to me, though I am quickly getting used to how disruptive it is!!I have a very good difficult asthma specialist consultant - it helps that he has seen me acutely unwell and a very good support network around me. I just find it difficult to make the right decision in this grey area and don't know where the best place to find out this info is ....
Thanks for reading,
Laura x
13 Replies
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Laurs, i know exactly what your talking about.
I still have a problem with it, as i get to the point where i'm too ill to get to the GP of cons and not quite ill enough for hospital. its a pain and i really really sympathize with you, its been much more of a problem this year for me than last year. i find i know when my CO2 is starting to rise and i then i go in (this is not a reliable technique and quite risky) but my oxygen tends to go quite a bit before this and i look a tad blue, which tends to make people like my mum nervous. At this point i cant do the things that i normally would and brushing my teeth is exhausting, and i can't get up the stairs to my bedroom. this results in some major sofa surfing, (i've recently done a star wars marathon).
Its even more irritating when you don't know how long this 'grey area' its going to last or if your going to bounce back or just crash (albeit slowly). admittedly i tried to speed this up a year ago by dropping back on my blue inhaler and dropping the pred a bit ( i don't recommend this as it was extremely unpleasant and i ended up in an an adrenal crisis as well (i tried a 40mg to 0mg drop on the pred....back then i didnt know about adrenal glands... or my lack of)
but in the end my asthma nurse and consultant came up with a strange hospital criteria for me which was 'if i can't walk or talk' and 'profusely sweating' - that gets confusing in the summer but normally my hair will get quite wet. i have to go to hospital.
however it is very hard to make the call yourself, as i've found a night i can get that bad, but then i improve during the day so i'm left not quite sure what to do. luckily my mum has pretty much always been around to take me to hospital when i need to go (this will be changing soon). but in general if i dont pick up during the day and get worse at night that tends to be when i attend. but there is little or no guidance for most people in this 'grey area'. which is very frustrating.
but sometimes you don't make the right call and leave it too late, i've done this once or twice and ended up collapsing just outside the hospital rather than in it so i'd say if your ever in doubt don't leave it to fester especially if you feel that you can't control it anymore.
sarah x
oooh just saw your rightcare plan thing- how did you get one? can you tell me a bit more about it?
Laura has been a good girl and got her butt down to A&E...mrs ""grey area"" lol!
The rightcare plan was given to her by her asthma nurse, who initially suggested it. Basically it has all the basic details, name, DOB, address etc and then a small clinical narritive, something along the lines of ""Laura has severe brittle asthma and frequent attacks....blah blah blah.....Laura knows her condition and the treatment she requires very well, be aware an urgent 999 call may be required"" its only a few lines long but basically, having one means that 111 know she needs their attention rapidly in order to avoid 999. It means when she rings them (even for non-asthma stuff she has found) they make sure she is straight through to a medical-type and will be seen urgently. A downside is that they are often more worried about the asthma than the presentiong complaint, although for someone who tends not to wheeze like Laura, there is the concern that if she did go in with her asthma then someone slightly less experienced may think she's fine when actually she's acutely unwell. If you are someone who uses 111 a fair amount then ask your GP about it, personally im not sure it would do me a lot of good, i tend to need A&E by the time i've admitted defeat and A&E have notes and stuff more readily available HTH!
I'm interested in this Rightcare plan too. There have been several times I've thought about calling 111 but have known if I did the'd send an ambulance, and I know I wasn't at that stage yet. That has twice now led to me eventually having to call 999 myself after I hung on too long!
Hiya,
Been meaning to reply for a while ...
Thanks for updating for me Soph its pretty much what Soph says.
My rightcare plan was done by one of the nurses at my GP surgery. It gives you a direct number to the medics at 111 rather than the assessment rubbish you usually have to go through, It gives 111 and OOH an overview of what to expect with you and ensures you get medical treatment necessary and promptly.
With me though, there is no point in ringing regarding asthma as I can treat as much at home. I only get help now when I need IV stuff, but that's just the level my asthma is currently at. I rang last week, and to be fair wasn't talking properly and they promptly sent an ambulance out! That said I was allowed home after a few hours in resus!
I have found though (after visiting OOH due to a sickness bug and being concerned as I am on maintenance pred), that OOH are FAR more concerned about what my lungs are doing rather than the actual problem!!
Laura x
Any progress with home nebs Laura? I hope so, Id fight to the death to keep mine now!
Hey Sparkle,
The home nebs is a long story LOL!!! I was referred to my original consultant about 5 months ago now (before the serious admissions started!!) who said that I was very brittle after having a lot of pretty severe attacks, but no admissions on a lot of medication. Then the serious admissions started as my attacks became more frequent and more severe.
My original consultant was VERY against home nebs, and wasn't overly confident with me - he freely admitted to being confused and clutched onto anxiety in my second appointment. He was general respiratory and not specialist in asthma. He was also talking about referring me elsewhere.
I have since changed consultants, as the hospital I go to is better and more easily accessible, but different to where my original consultant was. My new consultant is a specialist asthma consultant and has seen me both acutely unwell (in HDU) and on the back end of a severe attack. SO I have changed to him now. He is for home nebs, but wanted to sort it as an outpatient, not while critically ill. I haven't seen him during my 4 subsequent admissions.
Fortunately I have discovered a very good advanced nurse practitioner at my GP, who GETS me!! She realises that I need a break from a&e (11 serious admissions in 7 weeks ... always requiring IV treatment). She has prescribed me 5mg Salbutamol nebs to use PRN during an admission last week, I ironed out the finer points, and if I require 2 nebs within 4 hours I need to go in, but hope it means I am home more!!
Hopefully control will be achieved soon ... for you as well!!
How are you feeling now? Confident you'll get out tomorrow?
Laura x
I am so glad that you finally got the home nebulizer, and even more importantly a consultant that trusts you. Here's hoping that home nebs will allow you to spend more time at home!
Pleased to hear it Laurs, hope they do help you stay at home. Just thought I'd mention, don't be suprised if the consultant cuts you down to 2.5mg nebs, Ive been told by 3 cons now that 2.5 more often is actually more effective than 5 and can reduce the shakes as well.
I'm home but on VERY strict instructions to go back at first sign of any deterioration.
I'm glad to hear you have found someone who gets your asthma and seem to have built up a team who trust/support you. Also pleased to hear about the home nebs. I hope this allows you to spend a little more time at home.
Take care
Can I be a bit stupid but what is the 111 number for?? I live in Scotland and we don't have it. Is it instead if NHS24???
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Can I be a bit stupid but what is the 111 number for?? I live in Scotland and we don't have it. Is it instead if NHS24???
It is in England only, see here for more details on the NHS 111 Service. It replaces the NHS direct service and also acts as the initial contact for the out of hours GPs. The Scottish equivalent is NHS 24.
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HTH!
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