Outpatient Clinic

My wife is currently the psych SHO and last night she was worrying out loud at having her very own patient in today's outpatient clinic for the first time. She was thinking about a family sitting somewhere in the city also worrying about the appointment - would the doctor listen? what would the verdict be? is there anything they can do?

She asked me, as someone who frequently panics at her about upcoming appointments and debriefs with her afterwards, what she should do to make the clinic a good experience for the patient.

I told her that the fact she was aware how much of a big deal this appointment would be for the patient and their relatives was probably half the battle. My main tips were :
- (you can guess what I'm about to say I'm sure) Listen to me. In particular listen to what their concerns are - for example, if I am telling you that the main problem currently is fatigue then you need to address that as well as anything you identify as priorities, such as mobility or falls.
- Form your management plan in discussion with me. There is no point you prescribing something I'm not going to take or referring me to a physio I'm not going to see. Please try and understand that I am not being deliberately obstructive when I tell you I am not willing to take a drug with a particular side effect etc. I have that right, even if you believe that in my position you would choose differently.
- Specifically ask me if I have any questions about or problems with the management plan. Sometimes even the most assertive person needs permission to question an authority figure (which is how most of your patients will see you).
- Also ask if there was anything I wanted to bring up in the appointment that I haven't had the chance to mention. This is my once in a year opportunity to get your opinion, please let me make the most of that.
- Send me a copy of the letter you send to my GP - it's basic courtesy.
- Also, if you don't have a head for details I would *much* rather you take notes during our appointment than you send out a letter full of inaccuracies. To put this in perspective, I have never had an entirely accurate outpatient letter. I have had a letter which has listed 'hypothyroidism' as my only past medical history, when I have never had it, but have really quite a few other relevant conditions, letters claiming I take no medication etc. Worse than inaccuracies, are the fabrications "she appeared depressed and we discussed that her mood has been low". We didn't.

Try and put yourself in my shoes - this is a condition I am living with day in and day out - this is my one chance to talk to the doctor who manages it. Each appointment is a really big deal.

May I also recommend the excellent post on the same subject from Anya at The Patient Patient who is much more articulate on this subject that I have managed here.

Fall Down 7 Times, Get Up 8

That is what I say in my head when I find myself on the floor. Legs got wobbly, head got dizzy, knee got dislocated and bam. There I am. On the floor again.

I have fallen on average at least once a day since my 2nd year of university. 6 years, 2190 falls. I've never done that maths before, but I feel it. I feel it every time I find myself on the floor, fighting the fog in my head, trying to make sense of where I am and who I am and which way's up. Assessing the damage, replacing runaway joints. Sometimes persuading random folk not to call an ambulance or crawling out of the road.

And then I just lie there. My body feels like lead, my head like cotton wool. My brain can't think of the words and my mouth can't form them. My heart is thumping and my head hurts and everything hurts. Getting up again feels impossible.

One of two things happens next. I shout, I swear, I hit the floor. I curse my body that has betrayed me again, I curse my doctors who have left me like this, I curse the falls clinic that only sees over 65s and the physio who can't see me because the rheumatologist discharged me and the 1 year and 5 months I've been on the waiting list for a social services assessment. I curse gravity.

Or I curl up into a little ball and cry. I cry because I'm scared and it hurts and it feels bad in ways that I can't describe to someone who doesn't know what it feels like when you don't have enough blood supply to places that need it. Sometimes I lie there for hours because I keep trying to stand and keep falling straight back down again. I cry because there is no way I can clamber my way back up again only to fall. Again. I cry because these few moments of 'no more' are as close as I can get to giving up in this situation.

There is no giving up. Fall down 2190 times. Get up.