I am a person who does speak up during my clinic appointments to defend the choices I made in my diabetes management but sometimes I don’t. Why? Sometimes I don’t have the energy to repeat myself, sometimes I feel that the person I’m talking to isn’t in the mood to really listen or is thinking about the waiting room full of people waiting, so I just listen to what they have to say and disregard it if it doesn’t make sense to me. So I’m a hesitant self advocate.
I’m also a person that used to tell other people with diabetes that there are many benefits for them if they speak up too but in the last two years I’ve heard many stories where people have spoken up in clinics and have been treated horribly or that it didn’t make any difference. I think that this is something that our community needs to acknowledge and that we have to have a mechanism in place for people who don’t feel that they can speak up anonymously and confidentially.
The Downsides of speaking up
Labelled as difficult
When we ask for help during our clinic appointments, we can often be labelled as difficult (this has happened to a member of our community) which makes the health professional to read our medical notes treat us very differently. Most people aren’t aware that this has happened unless they have a reason to request their medical notes from their clinic. In this situation there is nothing we can do unless we know but it’s also a reason for others to advocate for patients to have unlimited access to our medical notes. Muiris Houston wrote this piece in The Irish Times about on why people should be allowed to examine our medical notes and is worth a read.
The expectation that we will speak up
Recent Irish & U.K. research revealed that health professionals expect us to request treatment options such as insulin pumps or glucose sensors (see Thriveabetes - How to get a glucose sensor) from our diabetes team if it’s something we would like to try. This raises a question for me: what other health conditions do suggestions for treatment options come from patients and not doctors? I don’t understand this theory at all and if people with diabetes rely solely, as many do, on their team for information on how best to manage their diabetes, then how are they supposed to know that a pump or a sensor is suitable for them?
A real life example of this happened a number of years ago when a speaker at our support group was asked if they would ever consider trying an insulin pump given how athletic this person was. The person replied that it had never been suggested as a treatment option by their team and therefore had never been considered. This person discovered that it couldn’t be offered as a treatment option because the clinic they attended didn’t provide it.
Not being heard
The feeling of not being heard is prevalent most when talking about the psychological effects of living with diabetes because there is no allowance for this in our current standard of care guidelines. Often because our health professional has no training or no resources to refer us to the response we get is as effective as “just shake it off” or that we should realise there are many worse off than we are. This doesn’t help and can lead to making the situation so much worse.
Burnout
Diabetes gives us a never ending list of daily tasks and decisions to make about managing our diabetes. People with diabetes already work hard to manage our diabetes and then we have the added burden of responsibility of advocating to make sure we get a basic standard of care, something no one should have to fight for. I chose the word “fighting” because sometimes you leave your appointment feeling as exhausted as if you’ve gone two rounds in a boxing ring. Why is this our responsibility alone? Is it because it’s easier than fixing the real problem?
Many in our community don’t make formal complaints about our services because they feel this is a very real threat to their care and I have to agree, and because there are no formal complaints on record the issues are
never even acknowledged let alone addressed. Speaking up doesn’t always help us get better care and we definitely need to have mechanisms in place where we can speak up anonymously and without jeopardising our standard of care or suffering the consequences.