Lived experience should guide mental health policy

In previous episodes of this programme, we’ve heard worrying statistics about the growing prevalence of mental ill-health across the world. But are we overlooking a potential gold-mine of information that could help us to better address the issue and reduce the likelihood of mental illness manifesting in the first place? As she explains to Chris Smith, Claudia Sartor, from the Global Mental Health Peer Network, is a staunch advocate for the importance of hearing from people with “lived experience” when drawing up policies and treatment plans…

Claudia - We continue putting forth an argument to include people with lived experience of mental health conditions into discussions that are happening globally and get their perspectives and recommendations on what they think should change and what should be in place to better those practices.

Chris - Is that not happening already? It boggles my mind to think that we would make rules, regulations, and policies for people without asking them first!

Claudia - Yeah. It is mind boggling. We've been advocating for this sort of inclusivity and improved quality care for a number of years and there is slow progress, but still very tokenistic. In other words, we still have psychiatrists and policy-makers sort of making decisions that are not including the people that are being affected by these processes. So we as an organisation, because we are run by people with lived experience, we are able to provide those insights. So the best way to tackle this is for us to bring our voices to collectively make this argument.

Chris - Do you think this is a legacy of presumed lack of capacity or lack of insight on the part of some patients and this has led to the view that the expert knows best? Or is there some other reason why the key people who are being impacted haven't been made more central to policy decisions and so on?

Claudia - Good question. The answer will vary dependent on context, right? So if we're looking at countries within the African continent, or perhaps southeast Asia, we're looking at individuals who already have limited access to quality healthcare. Certain African countries only have a handful of psychiatrists available. Then what happens is the immediate response is that the clinician is of a higher power than the patient. In Africa, there is a very big issue with power imbalance, stigma. So the very first thing that comes to mind is that this person I'm going to go see knows more than me. I need to listen to them. I don't have a say as to my treatment. I must listen, accept and move on.

Chris - But expertise matters, doesn't it? We can't devalue the experts because otherwise there's a danger we erode professions and professionalism, and that may actually be counterproductive. We do need experts...

Claudia - Absolutely, with no doubt. So we follow a process that is non-textbook. My experience, when I went to go see a psychiatrist, I went through the process, that mental health services process. So I, based on my experience, can give you valuable insight that somebody else cannot. So we can't exclude the voices of people. We know what works for us and what doesn't, and we should have a seat at the table.

Chris - One thing that jumped out at me when I read your manuscript was one of the things you're advocating for is paying people to come and share their expertise in that respect. I was a little uncomfortable with that, in the sense that do you not think there's a danger if you do this you almost create an industry and, and it might bias thinking because the wrong sort of people might come forward?

Claudia - There's always gonna be a risk. But stakeholders, companies, whatever it may be that are looking to improve wellness strategies within the workplace, if you have somebody that has had specific experience in the workplace where they were discriminated against, they lost their job, they were told they were never gonna be able to work again, you need those type of people helping companies go, "let's create processes that's going to create a safer environment." So, by paying these individuals, you are valuing their expertise. I spent four to five years where I was helping big international organisations and I would spend hours and hours and hours looking at reports, giving in my input and recommendation and I didn't get paid for it. And I really felt that that was an injustice. It shouldn't just be seen as volunteers. These people have knowledge that others do not.

Chris - So what sorts of things have you been able to bring to the fore and exact positive change thanks to your intervention?

Claudia - For example, we worked with a very big pharmaceutical company and they took the initiative and they looked at their policies and they said, "you know what, this isn't good enough at this stage." And we went in and revised their entire policies and helped with consulting and making those changes. And we basically received this recommendation to say thank you so much because we're now implementing these changes and it seems to be working. Staff morale has increased, there's more knowledge about mental health.

Chris - Why do you think this is needed though Claudia? I don't dispute the fact that you're doing a good job, but why have we ended up in a position with a world that needs this to happen when you didn't exist historically, were we all just terribly miserable and didn't talk about it? Or has something fundamentally changed that means that suddenly this is a much more serious issue, it's much more prevalent and we need these sorts of interventions and if so, what is it that's driving this?

Claudia - There was not much talk about it. It's an invisible illness. People don't see it. Therefore you're okay. There's also a lot of stigma. Covid is what actually really brought out mental health, because people now started seeing how being in isolation makes you sad or depressed. Having no contact with people ,feeling lonely. That's why there's now this sudden surge of inquiries about how can we better improve the status quo.