As some of you will probably know, Soph is having a pretty rough time with uncontrolled asthma and far too frequent serious hospital admissions. She also has had a lot of bad luck with consultant appointments, and like (I suspect) a lot of us, struggles to articulate how things really are in that snapshot of a consultant appointment, when all is normally well!
Soph is pretty similar in a lot of ways to me with how her asthma presents when it all goes downhill, so I offered to go with her to this appointment to support/speak on her behalf/put across the points which NEEDED to be raised.
The appointment didn't start overly well, as the resp cons seemed to be out of ideas, he initially tried to state that there may be other factors contributing towards Soph's asthma - you know, the normal stuff: anxiety, perception and all the usual c&%p. The cons soon shut up about this though when he was showed a few of the more recent discharge letters, which pointedly use phrases like ""life threatening"" and state that the asthma is putting pressure on her heart etc.
Soph knew what she wanted to get from the appointment - 1. Atrovent (as a regular med), 2. Uniphylline (made a big difference in the past) and 3. to discusss the possibility of home nebs. The cons made it clear from the offset that *really* he had no intention of doing anything at the present moment. So (me talking on Soph's behalf) we discussed the HUGE impact this is having on her life, that as a young woman she really cant keep going through this - such frequent admissions, NOT able to be a student and have fun and how she spends most of her life trying to avoid the next admission. She CAN'T keep going on as she is.
SO .... with some pointed and very relevant science and facts that he just could not ignore and a few choice words, Soph managed to come away from the appointment with regular atrovent AND uniphylline no home nebs ... yet, but hopefully in the future Soph would be SO much safer with nebs at home, would avoid SO many admissions and would actually be far less ill and need far less invasive treatment than she does currently when she does present if she had home nebs. Win win all around I think, both in terms of quality of life for Soph and cost to the NHS ;-p.
Anyway, we are both shattered, but for me, it was definitely worth it to see Soph come away from a resp appointment smiling and happy rather than upset and frustrated!!
Hopefully things will now improve for her and she will manage to get some control AND if she doesn't, well at least they aren't ""closing the door"" on ideas, they are trying other things out
Laurs and Soph: Thank-you for sharing this. To be honest I wouldn't have thought it would make such a difference to have another person there. This is good to know.
Soph (I assume you are reading this even if not writing), I'm glad you came away with something to try. I'm rooting for the home nebs (eventually). For me, they make a world of difference in quality of life. And in general, I think whenever a situation is on-going, it is really important psychologically to increase the options for self-management. To the extent that anxiety is a factor, I think being able to be more in control of treatment options lowers anxiety. I know there is research on morphine use that shows that patients who are allowed to self administer through a pump (obviously with a max setting) actually use *less* morphine than those who are dependent on nurses for morphine. I suspect there is also research on self-management and quality of life to be found: might be worthwhile to search google scholar or look in the bibliography of the various best practice asthma management documents by GINA, BTS/NHS, NHLBI/NIH (US) for sources to make your case the next time round.
Laurs: you mention using relevant science and facts - how did you do that without making the cons defensive or antagonist? Do you think it was related to delivery (Soph's get the doc to come to his own conclusion technique)? The fact that you were a third person rather than the patient?
Hi Beth, thank you for your post
I think the thing which made the biggest difference was someone else being there who really ""gets it"" to be an advocate for when things aren't going down the desired route!!
The science I spoke about, I was able to tell the cons what my own background is, making it clear that I understand what's going off when soph is really ill. But doing this in a nonconfrontational way really helped!! I think it's important to explain that you *get it* from the offset as it lays out the foundation for the rest of the apt. Also not being obnoxious etc is really important! I found that if he said something which didn't sit right, asking for clarification was really useful! It also helps you to understand their points of view on things.
It's also far easier to advocate for someone else than yourself. In these apts, soph closes down when things start to go wrong (I do the same in my own apts), making it impossible to get across the points which really need to be heard. These apts are so vitally important, and I think we all put to much thought and preparation into them - they could potentially be life changing if they give you something which is going to give control!
I think home nebs are really important for those asthmatics like you, soph and I who really aren't well controlled, both in terms of quality of life - just being able to do something active would be awesome, and tbh I think it would make alot of is safer as we would *do* something at a far earlier stage!!
Yeah - soph read the post and have the ok with it before I posted it
I am so pleased that your consultant appointment was a positive one Soph.
Well done to you both Laurs and Soph.
I really do hope you get the home nebuliser Soph fingers crossed for you on that one, I certainly would not be without mine particular with the way the weather and high or very high pollen counts are at the moment.
I do hope the Atrovent and Uniphylline help you get better control of your asthma.
Well done to you both for your team work Laura and Soph. I don't understand why some consultants don't try everything and anything when someone is obviously struggling. What is their reason not to I wonder? I really hope your new meds make a huge difference Soph! xx
Nice work!
On Beth's question about ""how did you do this without being antagonistic"" - it probably helps that Laura is a very smiley, non-threatening person generally... having met her just a few hours before the appointment. So I imagine, Laurs, that you were able to reach the point where they realised you knew your stuff before they started to feel threatened... and then when you did have to use your extra gears, and make it clear that you weren't a push-over, you were already in a really good negotiating position.
JF - I think part of the problem is that our consultants (and docs generally) want to feel like they're helping us, not failing us. Soph has the difficulty of presenting as being much older than she is and much more 'ok' than she is - which I think a lot of us do (at least the OK bit). So I expect that they get caught up in focussing on the 'ok-ness' and not the problematic parts.
We all face the same challenge really - in those appointments the power balance is so far in favour of the consultant, that if we raise something and they shut us down we feel stupid / vulnerable etc etc. And then it becomes even harder to speak up, and the doubts creep in that if they aren't believing/supporting you in this particular detail then they will start to devalue everything you say, so we shut down completely and just become 'obedient', for fear of losing what support we do have.
Cx
This really makes me think about how I need to approach my next cons appt! Problem is, I do think it's a lot harder to do for yourself for the reasons Curiouser gave - I know I do that, and I also feel like I don't have enough knowledge to argue with my cons. I should add that in other situations I am perfectly happy to be argumentative. question things (I believe things should be examined on their own merits not on who said them so I wouldn't automatically assume a cons is right because of who they are, even though I recognise I am in no way any sort of expert).
But - defo agree, it does feel like I'm completely powerless! I kind of wish I could take someone with me, but I don't know how I feel about having someone else in there, or how it would affect things. I'd love to have Laura there but she lives a bit too far away to make it practical. not to mention the unstable lungs (though she still offered!) I think taking the right person in is v important as well - I'd never take my mum in for example, even though in other situations she is great and has done some productive ass-kicking.
Your post describes what goes on at our appts so well, thanks for that info. If ever I am referred back to the consultant in the future I will remember this.
I think it is a really good idea to take a list of how our symptoms stop us doing what we can normally do too when we have good control as I go from being perfectly normal with no limits and my asthma is in the background to 'sofa surfing' and off sick from work and it totally dominating my life. It can help remind them of what you are aiming for.
Thank you for your replies
Curiouser, you hit the nail on the head with your description of these appointments! Its so much easier as an outsider to do this, I think its probably something to do with it being less personal almost, but determination to just *do* something!!
I also certainly agree with you with regards to seeming ok!! My own consultant has never seen me really struggle, eventhough he's seen me during an admission, it was the following day and I bounce back quickly! They somehow seem to think that there is something psychological if it takes longer than the norm to sort out. There are too many of us awkward asthmatics out there tho I think!!
Thanks again everyone!
Laura x
I am so glad the appointment was a positive one and thank you for the comments on the thread. It has given me some really good points to consider before my appointment in a few weeks. After the last one, I am already starting to feel nervous but your discussion has helped me to think about my approach so I don't get too passive or defensive (both of which happened at my last appointment). My twin sister (who is a doctor but also a brittle asthmatic herself) has regularly offered to come with me but I always worried about how this would look-I might reconsider this now.
I'm so glad the appointment well, and that you've been given some new things to try. Fingers crossed they give you some benefit.
Curiouser - you hit the nail on the head, and is the reason why I'm reluctant to push for a referal. I'm am passive and easily put down at the best of times!
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no home nebs ... yet, but hopefully in the future 
Flogging a dead horse... when will they admit defeat?
Home, but it's hard..
Doubled Seretide 500/50 and Uniphylline
