Friday, 21 March 2014

It's about my health, so why can't I be involved?

My frustration is at an all time high and my engagement is at an all time low.

When will I find a GP that actually lets me be involved in my care? Allow me to be involved in the decision making process about me? Allow me to see the information they hold about me and my conditions?

I recently blogged about visiting my new consultant at Sheffield, where a diagnosis of Raynauds was given. A letter explaining the details of this diagnosis and the possible (and recommended) drug therapies available to me was sent to and received by my GP.

I have yet to see this letter and I suspect I never will!

I only know my GP has a copy because I rang on Tuesday to discuss my other constant gripe with them... that of stopping me from ordering a repeat of my insulin, test strips, needles and lancets every three months - you know, those minor things that keep me alive! They "resolved" that issue by setting the system to require a review on, yes you've guessed it, the 18th June 2014!
At the end of the conversation I asked if they'd received the letter from the consultant and, when they said they had, I asked for information on the drug recommendations so I could decide what I wanted to do.

After mulling over the options, speaking with my DSN and an impending visit to Iceland looming (which is currently in the grip of some horrendous snow blizzards) I decided I should consider having the drug as a backup for those days when my hands just hurt that little bit too much.

As I was going to the GP surgery today to pick up my latest prescription, I asked the receptionist if it could be arranged. She looked on the system, pulled up the letter from my consultant, read it all and then suggested the GP should give me a ring next week as they didn't work on Fridays. So it has been agreed the GP will ring me on Tuesday to discuss how I can best make use the drug once it's prescribed. This is good. I will get valuable input from the GP and will have it on my prescription before I travel to Iceland.

What annoys me most is that I'm not allowed to view the recommendations provided by my consultant in the letter to my GP about my condition. The GP and the receptionist are the ones that control this information and they relay what information they chose to me - I feel totally disempowered and, as a result, totally disengaged with the whole process. The end result is I suffer more.

What happened to the "No decision about me, without me" idea?

Surely for that mantra to ring true I should have access to the same information the GP is given?
Wouldn't it be sensible for me to be the recipient of the letter and my GP cc'd on it?
Why can't I be trusted with this information about me? Am I not clever enough to understand it?
Must the only way I access this information be via translation and summary from the GP and their receptionist?

I want to be involved! I want to understand my health and my care! I want to be a part of the decision process! Surely this is a good thing? Better outcomes occur when patients are involved and engaged, so why am I constantly shut out?

Maybe one day things will be different...