A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Wednesday, 12 August 2009

Taking action

After my latest bad attack I decided that I need to come up with a plan of action for future bad attacks that quickly spiral out of control and make my brain addled. I think I mentioned this before. I wrote a letter to my GP explaining how quickly I deteriorated this time and how rapidly I lost the ability to make sensible decisions (telling him the random things I'd put in my bag when I staggered to the surgery just before being admitted to hospital). I explained about some of the difficulties I've had in A&E and RVI in the past in terms of treatment and incredulity at some of my allergies, and anxieties about needing an advocate with me when I can't speak due to breathlessness. I explained how I know that 'can't breathe' should equal 'dial 999', but that in my state of hypoxia/hypercapnia I wasn't able to make this judgement and that the previous difficulties I've had in A&E etc fed into this inability to make sensible decisions. I asked if it'd be possible to think through this problem together, because whenever I try to think about it on my own I get in a tangled twist, which I is probably the stress of the attacks getting to me and I get into the same state of mind as when I'm in the attacks. However, I wasn't 100% sure that the doc would think this was within his remit, or if he might think I should be able to think about it on my own, so I was clear that I didn't want to take an appointment slot unnecessarily if he didn't think it appropriate, but that I would appreciate some feedback. I dropped the letter off at the surgery on Tuesday last week (the day after I got out of hospital) and received a reply through the post on Friday saying that he did think it would be appropriate to discuss these issues together, although he wasn't completely sure what the answer was as some of the difficulty seems to be my reluctance to go anywhere but ward 29 at Freeman, which of course isn't always possible. I had an appointment with the GP on Monday morning.

The appointment was incredibly useful, and I also think it was helpful to have written the letter and 'given' it to him in advance as it meant that he'd had a chance to think about it and discuss it with some of his colleagues too. It was useful too to have explained about the hypoxic/hypercapnic confusion, which he described as my 'being away with the fairies' ;oP and one of the ideas he suggested was coming up with some kind of repeatable mental challenge that friends can do with me (through text if necessary) to assess my level of 'away with fairies-ness'. There's one used by medics which involves repeated subtractions of seven from a hundred, and you have to get something like six or seven in a row right or you're deemed confused. Provisionally this test will do, but I'm trying to come up with something else as maths isn't my strong point at the best of times ;oP It's a starting point though and it might help. The point is that if I can't 'pass' the mental challenge - whatever it turns out to be - then the person doing it can take charge of the situation and make the decision for me to get help/call an ambulance.

The second thing the doc suggested was to see if the ward/hospital could supply me with a pulse oximeter so that I have a clear clinical marker too. The problem with this is that sometimes I can be hypercapnic yet still have acceptable oxygen levels (which is a bit odd, but then this is me ;oP ) so it may not be as useful as it first seems, and could potentially give a false sense of security. The other difficulty I wonder about is funding. Even the cheapest pulse oximeters are £200-300, and I know that the ward have had to fund buying most of the ones they have themselves, so I don't think it likely that they'd be able to supply me with one. However, my GP is going to write to my consultant - Dr H - so he may put the pulse oximeter suggestion to him in that.

The primary reason my GP is going to write to Dr H though is for something of huge potential use - arranging a meeting for me with one of the A&E consultants. Now I don't yet know if this meeting would be just by myself with the A&E doc or if Dr H or my GP would be there as well, but the purpose of the meeting would be to discuss past difficulties I've had in the department and how these have eroded some of my trust in some of the medics; to discuss my treatment protocol and get it put onto the computer system if possible; and to ensure that something similar happens regarding my allergies, highlighting that I can't have and should never be given magnesium sulphate (often given to people in A&E having a severe asthma attack). I expect it to take quite some time to organise this kind of meeting, but I think it has potential to be extremely useful and could help alleviate some of my anxieties. I made it clear both in my letter and in my GP appointment that all in A&E were fantastic this time, but all the same, because of some previous experiences, I never assume that it's always going to be this way, so I'm sure the meeting will be helpful when it happens.

I've mentioned before that I carry with me a laminated copy of a letter from Dr H addressed to any A&E doctor 'strongly suggesting' the course of treatment to take when I present with my asthma. I also carry a letter from Ward 29's Charge Nurse saying that I'm usually under their care and they're always happy to take me as soon as I don't need ITU/HDU care, but can they please be informed of my admission as soon as possible so that arrangements can get underway, especially as I'm MRSA positive so need a side room. Anyway, I'd mentioned both these letters in my own to the GP, not really realising that they weren't aware of them, and in my GP appointment he asked if he could see them. Not a problem at all, and he was impressed with them and their usefulness. He asked if they could take copies of them, and scan them into my records, not just because they're useful for them to have, but also so that they can print them off if ever they need to give them to paramedics etc. It wasn't something I'd thought of, but thought it a good idea.

We talked a little about my most recent attack and presentation at the surgery. I said how I was so away with the fairies that part of me was half expecting whichever doctor I saw to send me home. Dr R (GP) looked shocked, surprised and exclaimed, 'Really?! As soon as you phoned everyone scrambled into action and when you arrived we all jumped out of our seats!' He said that they know when I phone up/call in saying that I need to see a doctor that I'm not time-wasting or exaggerating, but one of the few patients who genuinely do need to see a doctor. They know that I don't and wouldn't abuse the system, and that whenever my name appears on any of their lists for the day it flags up. Actually, at this point in the conversation Dr R said that when my name appears on the list they get scared, and he threw his hands up with an expression of 'Oh no!' ;o) I'm not sure how great it is to have this effect on one's GP ... on all the GPs, nurses and receptionists in the GP practice ... LOL

All in all it was a very useful appointment, and I came away feeling very positive about it. It was good to be able to share a little more about what it's like actually being in the throes of an asthma attack and some of the fears that run alongside the event itself as well as anxieties about potential treatment errors in the emergency situation. Aside from the mental challenge (which I've yet to fully decide upon and then discuss with some friends who may be able to help do the 'assessment' in future attacks) nothing has been firmly put into place, but there is a plan and things are being thought about and implemented. It may very well be that I find myself in A&E again before the meeting with an A&E consultant is organised, but at least I know that things are in the pipeline, and I know too that my GP is now fully aware of my anxieties and previous difficulties. I also know that my GP is more aware of how confused and unable to make sensible and rational judgements I become, and how quickly this can occur.

There's very little I can do to help my health - nothing more than I already do, so far as I'm aware - so it feels good to have been pro-active in this instance. I knew I had to do something as my lack of judgement, and the influence of previous negative experience in A&E on decisions I made in my state of confusion, so nearly cost me my life this time.


Anonymous said...

Just call an ambulance is the most sensible answer, why waste time, at the end of the day its your life your messing about with.

BeckyG said...

Yes, Anonymous, that is the right thing for me to do, except that you've completely missed the point. When I'm really ill my brain is all messed up from low oxygen levels and high carbon dioxide levels. I can't think straight and my brain doesn't compute that 'can't breathe' equals 'call an ambulance.' So yes, while the sensible answer is to call an ambulance, it's sense that doesn't come to me when I'm ill. You may say, 'call an ambulance before you get to that stage,' which is fair enough, except that this state of mind can come about so quickly that there isn't always a clear stage between being poorly and being dangerously poorly.

It's definitely not that I'm 'messing about' with my life; it's that I get so close to losing my life that I just can't think sensibly. That's why I need the action plan. That's why I need help to recognise when I'm really poorly. That's why I need to have the meeting with the A&E docs, because although my brain is addled I still have previous negative experience feeding into the lack of sensible decision making. That's why the whole thing is particularly dangerous and not as simple as it may seem.


B said...

well at least anon wants you to live :s what a weird comment! oh well.

it sounds like this has all been really helpful and productive and i'm really glad that your doctor is so great.

that pulse thing - so would that sometimes give a result that took you to hospital when you didn't need to? if i've got that the right way round then i think that would be ok, occasionally going to hospital when you didn't need to. MUCH better than being dead.

Rachael said...


I think that your assistance could lie with the receptionists who take your call.

I used to call the doctors when I was poorly asking for an appointment, but as time went on it became obvious that by that stage there was little they could do and I needed hospital treatment.

Maybe at that point they could call an ambulance for you and make that decision for you.

Obviously, there are going to be time when you just need a regular, non-emergency appointment with your gp, but I recon it would be possible to differentiate between this and an emergency situation.

All the best

Sue said...

Just a thought - but is there any funding available (disability benefit type funding, something like that) which could enable you to access the £200-£300 needed, given how valuable this gadgetry would be?

ginge said...

sounds like a fab meeting. Love the idea of mental assessment; maybe it could be literary based, dickens novels, shakespeare plays, bible books in order etc?
Can i suggest a friend goes with you to a and e meeting; might be easier for them so say stuff you dont want to in case you feel it biases them?
love friend's suggestion of secretary too, worth discussing with gp to see what they think?

BeckyG said...

B, Anon's comment is quite weird, isn't it, and to be honest I wasn't very sure how to respond, but maybe what I did say has clarified things for them as I notice that they haven't come back to me on anything I said. As for the pulse oximeter, the worry is that it could give me false comfort. Sometimes (weirdly) my O2levels can be seemingly reasonably okay despite high CO2 levls. A normal pulse oximeter reading, or one in the higher end of low, could give false reassurance, which is why my GP is unsure about whether acquiring one of these would be beneficial. I'm going to discuss it with my consultant when I see him next week.

Rachael, I quite like your idea of the the receptionists taking the lead, but I'm not sure that they'd be allowed to make a clinical decision, especially over the telephone. Also, to be fair to them, when Michelle took the call from me this time she did keep asking if I was well enough to go to the surgery, which of course I wasn't, but I insisted that I would try. Having spoken to her since it's clear she knew that I wasn't well enough to get the surgery and really just needed to get to hospital, but she couldn't make that decision for me. As I say, I'm not sure a receptionist is allowed to make decisions clinical decisions, but it's a difficult one. Maybe I'll discuss the possibility with my GP though.

Sue, I'm not sure about the availability of funding for a pulse oximeter. I think I need to discuss with my consultnat the potential usefulness or otherwise of having one, and if he thinks it could be beneficial then look into acquiring one. It maybe that the ward could provide one, though I doubt it, but I've also been told of a reputable website that sells them a lot more cheaply than my GP is aware of, so that would be something to look into further.

Ginge, I'm still trying to come up with the right mental challenge. I like your idea of a literary based one so maybe I'll think along those lines. Oh, and my friend W has already said that she'll come with me to any meeting I have with an A&E consultant. She knows the score, she knows the details of all that I can and can't have, she'll stand up for me if needs be, she'll back me up and support me and she'll be able to remember things that fall out of my head at the time of the meeting. I always find it beneficial to have someone with me at important meetings like these, if only to be able to talk it all over afterwards. I think it's going to take quite some time to set the meeting up though, and as yet I don't know if my consultant or GP is likely to go too, but I suspect not. I'll keep you posted though and let you know when it's going to happen.

Thank you all for your comments. I do love getting them, enjoy reading and responding to them, even if it sometimes takes me a little while to get back to you.