This week has been one of those I would rather forget for many reasons. It has left me very unmotivated towards anything that isn’t D related. This does not bode well as I have my prep race for the London Marathon in just over 4 weeks and I haven’t trained yet.
My own GP has removed my life source of caffeine due to high blood pressure and heart rate so my brain feeling quite like an engine running out of petrol!
It also means I missed the GBDOC Tweetchat last night, one I really wanted to get involved with so i’ve decided to share my views on what I would have like to contribute:
I think demanding can be viewed many ways by different sides. To me I am not demanding when I ask for the best possible care and course of treatment for Emily however have found I need to be proactive with this because our HCP is not the kind to offer up help. So to them I may seem quite demanding but to me I am only getting what I think they should be providing.
Demanding more would for me mean more time given towards us before appointments, I get infuriated when they download pump data and within 3 minutes can analyse everything. Sorry but this takes a long time. Not just a fleeting glance. I would prefer we sent the data in 48 hours before an appointment so they can properly look at the numbers and advise us where they feel things need changing.
That being said I do send data between appointments to explain changes, and tweaks I’ve made. Only to now realise they do not even take notice of it. In fact the advice given was something I had already advised them I’d done a week before.
I always get the overwhelming feel that they just do not have the time to spend an hour looking at a patient’s data. Maybe this is the way things are with public sector cuts but as a tax payer who works 50hrs a week a feel getting the proper care is the least we deserve.
My 2nd demand would be everyone’s probably. More funds for CGM monitors. It is something that would make dealing with a condition that none of us asked for a lot easier. It should be seen as a requirement not a luxury. If they looked at the big picture they would cost a lot less than funding test strips/lancets immediately as well as the long term cost of complications that may need treating from poor care in the future.
I feel the only way can prove you we deserve the best treatments is to be the best as we can be in caring for D on a daily basis. If I can’t take the time to look at the data, carb count and try to keep sugars good then why should I be rewarded with better care.
This is why I feel we can be ‘pushy parents’. I will do night tests 6/7 nights a week at 12am & 2am (more if required). We will suggest, tweak and maintain our basal rates on our own outside of each clinic. We want the best possible life for Emily, to embrace her diabetes as she grows up, so if we can make it as painless an experience as possible we will.
Easiest answer of them all, the best place to learn about diabetes is with the #doc. They have taught me and supported me more than any DSN or HCP. When I need help this is where I turn to, not the hospital. It is an amazing place to discover. I couldn’t live without you guys!