‘Health system’ is an oxymoron these two words don’t sit well together – there is little health and it isn’t a system. Once again another week of poor customer service and multiple miscommunications and general lack of oversight in the glue that is meant to be holding things together. It always falls to family and I despair for those who have no one to advocate for them, or whose level of disadvantage through lack of English being a first language, or income or access to information, education …. you get my drift. Energy levels and fear you might not get what you need when you need it if you are disruptive play on your mind and capacity too. One of the family has the squeaky wheel principle – squeak long and loud until you are squealing like a pig is his motto.
So this week’s litany goes something like this:
oh sorry we haven’t called for a week – we had the wrong number in our system (what you couldn’t google or check another record?)
no we can’t provide that piece of equipment because our records say this is your prescription (really we haven’t been at that level for a month, and yes a doctor and nurse know that; perhaps no one checked the information?)
this piece of equipment isn’t designed for 24/7 use at that level (we know that, but no medico seemed to be concerned about that … we have raised that issue before …)
yes, we will hold, no they aren’t answering their phones, yes we have left messages on their mobile, yes we are still holding (persistence pays off finally after phones ring out, time and time again, messages of urgency get left, and tenacity rules)
wonderful – you have now given permission and have got the right prescription from the right person and the right piece of equipment will be delivered ( I wonder, will it be here on Monday?)
How many calls do I need to make before a review would be considered appropriate, I am up to two in four days, the tiniest of case management is required, as we have everything in spades – resources human and material to the max (even with a stretched system, reading records correctly, checking the logistics chain of information and elements are basics – just like taking obs – doing the basics right first time and every time is the best prevention. We have sorted it ourselves. but I am still expecting case management and have told you that – is it Ok to expect case management?)
When might the other equipment will be delivered – just a few things to help with showering, transfer … primitive assessment undertaken, no reference to resources (I remember when we used to show photos and draw little diagrams to explain to people what was on offer … why didn’t she have an iPad? No date or time on when they might be delivered – a pretty basic piece of customer service. Do they even have it in stock? I stopped helping when I wasn’t asked to corroborate evidence, some of the facts offered were inaccurate and most out of date; the presenting well client is a trap for young players, but she had been around the block a few times – she probably detected inaccuracies but I would have been reassured if I had been asked.)
I understand (and am disappointed) there aren’t enough resources to go around – because that is the only thing that makes sense. Poor performance and poor customer service at just about every junction and no visible effort of case management is more than annoying. For some people it could be life threatening or at least as in our case comfort limiting– at a time when we are at our most vulnerable accompanying our loved one on the end of life journey there is no little energy for shit like this. If we fall over at home (literally and metaphorically), then there are cost implications for the health system – it is cheaper and easier to keep us going – so from a purely economic point of view, lets forget about dignity, good manners, well being – it is worth getting right. Time to get out of the comfort zone so we can get into ours. And I sincerely, almost generously wonder, is that too much to ask?
I am back to an everyday promise to tomorrow: to be glue when I am asked to be, to do the basics right over and over again as the shortest and most effective way to prevention and to take a leaf out of the Book of Squeaky Wheel and advocate, advocate, advocate without fear or favour. But right now I need a rest from being squeaky and am grateful I have others who can do it for me.
Wheels roll on each day
Fuelled by squeaks and squeals
Time for comfort zone.