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
Thank you for reading!!