Over the years, I’ve been told by so many people that the patient voice is the strongest and most difficult to ignore and for a very long time I believed this wholeheartedly. But in recent years, I’ve been feeling that the voice of people with diabetes is nothing more than white noise, unheard and unsupported, especially in letting patients help with addressing issues within healthcare settings but also in having our own issues outside of this setting being heard. I feel that the patient voice is only as strong as the healthcare professional or organisation backing it and at the moment I don’t feel that is happening.
PS - this is another less than positive feeling post and I’m definitely feeling it. For my next post I would very much like to share something positive so please share your ideas with me, anything at all, even something funny. Plllleeeeeeeeaaaaaaassssseeeee :-)
I haven’t given up completely but I am struggling to cling to that last bit of faith in the strength of our voices. I don’t know if anyone else out there feels it’s too? Do you feel like you are talking in a vacuum? Do you feel like you are struggling to explain the seriousness of diabetes to get support for change?
This feeling is coming from many sources but especially from my most recent experience in my local region, where we are still fighting for access to basic diabetes education, the education that really makes a difference in our daily lives like carbohydrate counting and adjusting insulin for normal living. It’s something that is important to have as part of a basic standard of care. Not a high standard of care, just basic. And while we have made some progress on this issue, it has taken the efforts of many passionate people with diabetes and the support of MANY public representatives to make it happen.
This brings me to the feeling that our voices are almost completely ignored unless a person such as a politician, medical professional, a member of the media or an organisation decides to speak on our behalf. During recent advocacy efforts where I was in contact with public representatives which lead to a couple of media interviews, I’ve felt like my purpose was to make lots of ruckus while the diplomats negotiate on our behalf: a barbarian at the gate so to speak, that my patient voice was only called upon, indirectly, when health professionals felt they needed the help of the “mob”. While this may be the way advances in care progress, it doesn’t make us part of the conversation about us.
My point is we were never asked for help to build strong cases for funding resources, we were never asked to help when funding was denied, we are never asked directly to help when a health professional feels they have no other choice but to suspend a service. We are always kept at arm's length and used as bargaining chips. Our allies on the inside really need to make sure we have a place beside them (a reference to The Savvy Coop’s ‘The Allies and Trojan Horses of Patient Advocacy’).
Will you be our ally and bring us into the conversation about the things that affect us? #NothingAboutUsWithoutUs