9 months ago this evening I attended the Parliamentary Reception to mark the re-founding of See Me Scotland, Scotland’s national anti-stigma programme.
I have a tendency to work a lot, and being self-employed, I can’t just get cover when needed, so often am unable to attend these type of events. But this one being in the evening, it was manageable.
I spent the day quite looking forward to it. Because I was excited by it, and what it might mean for the future of mental health stigma in Scotland. I was enthusiastic and optimistic about what it could achieve, hopeful that this would be something which could make a very positive difference in people’s lives.
Thinking back to the event, four things stick out in mind for me:
- That it was positive that most of the event speakers acknowledged that there can be as much stigma in the health and care sector as anywhere else;
- That there seemed to me, from meeting people and from viewing the attendance list – a noticeable absence of NHS staff representatives… which confused me given that they are the National Health Service, and this related to mental health stigma
- What also stuck with me was a conversation I had with a head of a Scottish mental health charity. On introducing myself to them, they responded with ‘Oh yes, Amanda, I follow your tweets on twitter, you’re very entertaining’. Obviously slightly alarmed at this, given what random drivel my tweets often are, they then clarified for me ‘No, what I mean is that you’re enlightening and inspiring, you have a good way of getting your voice heard. In my position I usually can’t do that in the same way. Keep it up.’
- That there were so many amazing people at that event, whose heart truly was in the right place, who had the power to make a difference, and are a wonderful asset to mental health in Scotland. I walked away with a feeling of being proud to be involved in what is the mental health sector in Scotland, and I still retain that feeling, since there is a lot that is good about it.
I left the See Me Scotland Parliamentary Reception as enthusiastic and hopeful as I went in. 9 months to the day later, I am left wishing so much that I could say the same.
Instead, I’m left very disappointed by so much of what I’ve witnessed in the months since.
But, it’s not just me that’s left disappointed….
I am very involved in mental health in Scotland in many ways. I run a mental health training business and am one of the busiest mental health trainers in Scotland. I run mental health support groups. But, more than that, I have very regular contact with many people throughout Scotland who live with mental illness. Many who themselves experience stigma. Those best able to judge the See Me Scotland programme. And what I have been hearing from so many isn’t good…
‘Stigma’ itself is a very broad term. I often find it remarkable quite how many different ways it can be viewed – and how one thing which is non-stigmatising to one person can be viewed as completely stigmatising to another who is coming at it from a different perspective.
What I find so saddening is that nine months to the day after the Parliamentary Reception people seem to be asking the question ‘What will it take for out anti-stigma programme to take stigma seriously enough that they themselves stop stigmatising?’
For me personally it didn’t take nine months to start asking this question. Little by little concerns started to form in my mind. But I still took the stance of ‘give things a chance… give them time.. especially with a new team formed… find their feet… give them time to listen to people, etc…’
But nine months is a long time in my eyes, and if people don’t say it like it is for them, will we ever really change stigma…?
This piece is also very much based on the conversations I have with many others – several who approached me to chat about it, concerned… people are alarmed, and something surely must change…
Here’s just two quotes I had from two people who approached me to speak of it last night.
“See me are meant to fight for us mentals and what they are doing is just like… making us look mental’.
“I just wish that there could be an organisation run by people with the right intentions, no bias, real understanding.
There’s more quotes I could provide. My hope is that people will be comfortable enough to speak out publicly themselves, but in some cases there is a clear conflict and a wariness of the impact it may have on them of speaking out in an honest but critical way.
Wanting an organisation run by people with the right intentions – I can’t speak for anyone’s intentions. Only they themselves can do that. But the more time goes on the more many seem to conclude that the intentions of See Me seem to be about looking good, rather than doing good. It’s possible to do both, but should doing good be compromised for the sake of looking good…?
No bias – See Me Scotland receive funding from the Scottish government. They are managed by the Scottish Association of Mental Health and the Mental Health Foundation. Which I’m sure has many advantages. Yet brings a clear conflict of interest.
What about stigma from the Scottish Government – are See Me going to speak out against their funders? One person who spoke to me described how they experienced stigma from one of the organisations who manage See Me, and was left wondering why we can’t have an independent body who are working to bring about change and combat mental health stigma.
Real understanding – I don’t know the background of all See Me Scotland staff members. But I don’t need to. It’s likely that some have a real understanding of mental health – and some less so. But how can they really get the best understanding of mental health? But listening to those who live with mental illness. It’s clear that they’re seeming to ‘involve’ people with lived experience at many stages, but are they really listening to them? Not often enough from what it seems…
Prior to last night here’s just a few examples of some things that I’ve witnessed.
An implication from See Me that if someone has lived experience of mental illness that this means they will be on benefits: At a See Me focus group a few months ago I raised the question of why are positions in See Me which specifically look for people with lived experience of mental illness unpaid positions? Especially given that that’s pretty much the most valuable experience that a person can bring to an anti-stigma organisation.
Their automatic response: ‘We’re debating that, but the problem is that it’ll likely affect their benefits’. Now maybe I’m being pedantic about wording, but this is quite different from ‘the problem is that it may affect their benefits if they are on them’.
I’m not naïve enough to think that everyone who lives with mental illness will be in work and not on benefits. Particularly if you’re looking for a broad range of lived experience. But I’m also not naïve enough to think that just because someone lives with mental illness doesn’t mean they are on benefits, and frankly it’s quite stigmatising to suggest otherwise…
The See Me Scotland Advisory Group – See Me have developed an Advisory Group, 50% of whom have lived experience of mental ill-health, and were specifically recruited for this reason (unpaid of course). I happened to speak to a couple of members of the lived experience advisory group not too long ago, and in their cases they weren’t completely happy with how they were being treated.
Obviously somewhat wary of saying too much to protect the parties involved, but certainly the impression that had been coming across when I had spoken to them was that their involvement was tokenistic, and at that point they were not being meaningfully involved. That the first meeting had the funders present, and was a bigwig-type meeting, without any involvement of the people on the ground. This was certainly disappointing to hear, given that it’s the people on the ground who know mental illness – and mental ill-health and stigma are ultimately about what those people have to say, and not just about the graphs, slideshows and figures… I haven’t caught up with either of these individuals on this subject recently, but here’s hoping that things have improved on that end…
These are just two of the things I’m aware of, there’s much more I could add…. But wary of the length of this piece.
I had mentioned that things escalated somewhat last night.
Today, nine months to the day after the Parliamentary Reception to mark their re-founding See Me re-launch their programme. In preparation for that, yesterday evening they launched their new website.
The website – This included a section on various mental health conditions and the ways in which people are stigmatised. Soon afterwards I spoke to three people who were very alarmed by it – one of whom I contacted, the other two contacted me.
People were alarmed by how misleading and stigmatising the information on these sections were. Throughout the evening via twitter others raised concerns also – to the extent that it seemed there wasn’t one of the conditions webpages that at least one person hadn’t highlighted as alarming and stigmatising…
It was the eating disorders section and the dissociative identity disorder (DID) section people I was in contact with seemed to be raising the most serious concerns about regarding stigmatising content.
But… what is most disappointing is that I have witnessed a person in Scotland who lives with DID offer to help See Me write a section on the condition – and witnessed them be fobbed off. Only then, it seems, to give the task to someone who appears to have little knowledge of the condition, and who wrote a highly misleading section on the subject.
I myself will admit that I have limited knowledge on DID, but on reading this webpage on DID and stigma, it seemed so remarkably at odds with the little that I did know.
So, it seems that in this case:
- See Me Scotland had a clear offer from someone who lives with a very misunderstood mental health condition to write information on their website relating to that condition;
- They then appeared to fob that person off…;
- Passed the task to a person who appears to have little hands-on knowledge of the condition;
- Approved and published the piece, despite it being highly misleading, accurate and stigmatising.
Is this the best we can expect from our anti-stigma programme? Is this the best that people who live with that condition deserve?
It was far from just being the DID section that caused concerns from people. Most of the sections on conditions did… And it’s interesting to see that those sections have now been removed from the website, at least for the time being…
I know the person who wrote these sections. They were commissioned freelance by See Me to write them. But… this is nothing against this person. This is about See Me and See Me only. It is See Me’s website, it is See Me who approves and publishes the content, and it is See Me’s responsibility alone to ensure that they don’t cause further stigma.
What struck me was a feeling of ‘is this how seriously See Me take their own website and the information on it? Is this how seriously they take stigma?’
Looking back, this blog post seems full of opinions and hearsay and quotes from anonymous people. But it is what it is. An accurate account of what I’ve seen, heard and witnessed over those past nine months, and a partial account of why I’ve lost the optimism I had for See Me on 28th January.
This isn’t an anti See Me piece. Far from it.
I’m not anti See Me. I’m quite for them, because I’m anti-stigma, and I want Scotland to do all it can to challenge stigma. In the right way, and as affectively as we can.
Which must mean listening to what people have being seeing, hearing and witnessing. Really listening. And acting on it.
We’ve over two years left of the re-founded anti stigma programme I heard about in Parliament that day. So much good can still be done. Things can change for the better. Hear those voices which need to be heard – and don’t just take it as criticism to be rejected. Please take what people say as their truth –a truth which is valid and needs to be heard.