"The theme of this year's World Mental Health Day, held on Oct 10, is Lived experiences heard: real voices, real change. On its website, WHO states that the voices of people with lived experience should “shape the policies, services and decisions that affect their lives”. While these are laudable aims, they also serve to highlight the complex challenges involved in lived experience engagement and co-production, both within the field of mental health and beyond.
Lived experience is, according to WHO, “what someone has experienced themselves, especially when it gives the individual knowledge or understanding that people who have only heard or learnt about such experiences do not have”. This definition is unfortunately vague—eg, it does not distinguish personal from carer experience, and the phrase “only heard or learnt about” might cover a wide range of knowledge, from hearsay to decades of research and practice. Nevertheless, it establishes the foundational assumption of the lived experience movement: that key aspects of mental health are known or understood only by people who have lived through mental health problems."
Open access
Agree that it is at the sentiment stage and still feels locked in the 'good patient' hegemony without it being accompanied by a plan of safeguards to make it real lived experience. At its worst it could be the profession still daring to try and even
own the very experience patients have stuck on them and have to trot out in order to escape the system. ie turning them further into puppets. which is of course as harmful a thing and violating a thing as you could do to a person. Being forced to sponsor the thing that harms you otherwise... well just look at the power that's had over you with a label.
they need to tackle how people, including those in the industry, react and receive that brave honesty. Because that's been the issue - it has been used to hurt people, whether what they have is physical health or mental health, by false accusations that if they don't like what they hear then the person is mad and there is huge power given to them by virtue of that accusation even if their position carries no license or expertise to declare it is the person's perception being wrong rather than the situation being as they stated.
We have a ridiculous situation where someone could describe pure facts of their life and the receivers declare these as 'emotions' simply because it is upsetting to them as not a nice life or nice thing to be done to someone - yet the person having to live it is doing incredibly stoically and well - so they get treated as if 'the problem' is the emotional thing they don't have and in fact have the opposite of that should be meaning they get huge respect by their same orthodoxy (carrying on despite suffering what they couldn't). And that is used to nothing them and turn up the heat and take away their them. Which is the worst thing you can do to someone.
They also need to be called out on their disgusting straw man agenda where they find someone who they can say is 'an example for hope' but is instead an outlier. We all know the hint isn't telling those extremely ill that there is something to be hopeful for. It is to distract the conversation from those less fortunate being at least heard, nevermind getting acknowledgement and some of the support that could help them.
ANd of course there is the issue that in this ablist atmosphere where those with the biggest elbows or just most out there in the world and least invisible due to being the least ill and most supported/connected get elevated to speak because the logistics of any 'lived experienced' being heard tend to be exclusionary to those who can't do x, y, z and still speak. And because even if someone heroically found a way then the risk they are putting themselves under by doing so is life-risking potentially when those saying 'what they want to hear' is going to lead to pats on the head.
And what about those misdiagnosed, they get disappeared as irrelevant if it was true and in denial and yet the harm caused by it would be a major issue that would need to be tackled
None of this that I have said is anything ground-breaking or a secret, it is what everyone knows is and always has been obvious
try asking doctors about how they are treated in the workplace, and claiming that you are including those who are young and disadvantaged and it is going to care about those being bullied etc. then pretending that it will automatically have included those in horrific situations when every person in every career knows the way forward is never to talk about what happened to you at your last workplace. particularly when it is a small world at the top of the hierarchy.
I have sympathy for the risk to their careers, but they need to realise how even huger and more encompassing the risk is for those who are ill - it is their careers and any other career and their body and their freedom and their safety and their existence to be heard and exist in the world under truth, it is any finances and therefore any freedom from brutality and so on.
