Nic Crosby, Host:
Welcome along everyone, to our second podcast in this autumn series from the Small Supports programme.

I'm delighted to welcome representatives from the Free Our People Campaign, hosted by Inclusion London. I'll leave it to our guests to all explain more, but I'd like to say a big thank you to Simone Aspis who's joining us today to talk about the campaign and all the energy she's put into reaching out to people within that campaign group to make sure that the voice of people with real lived experiences is involved in this call.

Lastly, I thought it would be quite fun just to say a little word about the title 'Institutions are no Solution'. Simone and I met at a freedom drive back in 2018, I think it was, and then subsequently the most recent one, we both walked through the streets of Brussels, the European Network, for Independent Living, shouting at the top of our lungs: Institutions are no solution. As part of a European-wide campaign against institutionalisation of disabled people.
So, at that point we'll kind of move on.

So, Simone, could you just explain your role at the campaign and a little bit about the campaign?

Simone Aspis, Guest:
OK, so my name is Simone. I set up the Free Our People Campaign. It was set up back in 2018 as a result of my experience of working with somebody who is autistic, who rang me out of the blue and said "Oi, I need some help to get out of the psychiatric hospital", not any old psychiatric hospital, but only the biggest psychiatric hospital in the country, Saint Andrews Hospital.

I spent five years supporting her to get out of a psychiatric system. During that time was during COVID COVID-19 when Twitter was alive and kicking and I was tweeting about the work I was doing and I had a number of autistic people who just contacted me, said "I need some help with my care plan to move out of hospital" and then during that time I was increasingly getting frustrated. But there was a campaign that was led by parents but just focused on getting their children out of the psychiatric hospitals as opposed to working with the aim of getting all people out of hospital, whether they had supported families or not.

So, we wanted a campaign that was going to be there for everybody, who was struggling to get out of the psychiatric system and live in their own communities. I am somebody who identifies as being neurodivergent, even though I do not have lived experience of being in hospital.
However, I do have 30 years' experience of working with within the disabled people's movement. People First around all sorts of campaigns to better our lives and to promote equality and inclusion.

So, Free Our People Campaign began with the mission of a campaign that's led by people with a learning disability and autistic people. "Nothing about us without us."

Simone Aspis, Guest:
It's clear the reason why services fail. It is because there's no Co-production of working with our communities to design services that enable people to have good lives. So, I work now with Inclusion London, who have had a full year of grant to set up the Free Our People Campaign.

So, when we began, we weren't sure what we were going to be doing other than the ultimate aim was to get people out hospitals. But then, we had a number of organisations like My Life, My Choice, Autismer, People First Scotland, People First Wales, a whole range of organisations who wanted to come together to have a big campaign where we all work together, to have a big voice, to get a voices heard about moving people out of hospitals into our into, into a community.

There was definitely a lot of anger. That was the starting up of Bringing People Home from Hospital. So, the representative, the organisations and their representatives are here today, which is Lucy, Ava and Pam.

Lucy Bowerman, Guest:
Hello, I'm Lucy. I am one of the Co-chairs of My Life My choice and I have lived experience of being detained in long stay psychiatric hospitals as a teenager and I'm part of this campaign, I guess partly to get a bit of justice for my younger self, but also for the thousands of autistic people and people with learning disabilities, who are still wrongly locked up in these places, many for years and years on end.

I mean, we're talking decades with some of them. And I guess part of my involvement is yes to get justice for those people and to get them the right support as well.

Ava McAuley, Guest:
Yeah, I'm Ava. I'm an independent autistic trainer and speaker, and I've got lived experience of being detained in hospital as a result of a social care failure, which I'm now today here to share those experiences. I recently started volunteering for Inclusion London, so hopefully I'm able to be part of trying to campaign for inclusion, equality and human rights for neurodivergent people.

Pam Bebbington, Guest:
Hi, I'm Pam. I'm also a person with lived experience. I mean, I've been locked into psychiatric hospitals and it's not the right place for people. So, I think this campaign is really important to get them out and live in dependently as they can, like we can.

Nic Crosby, Host:
We're going to talk quite a bit about the campaign. I'm interested. Lucy, why for you this campaign is so important. You talked about a couple of things before we were online or before we started recording. And I'm just wondering if you wanted to share some of those thoughts?

Lucy Bowerman, Guest:
Yeah. I think ultimately the system that we've got now and the system that we've had for the last however many years is really, really failing people. It's it doesn't take into account that underneath, you know the diagnosis, the NHS number, that there is actually a real person with a real life - real interests, who is first-hand going through all of this. And I think that's one of the most important things for me, is that the system we've got currently is very far from person-centred and I think for me that's one of the most important things that we need to look at when we're looking at what good care and good support is. And essentially locking people in institutions for years on end. That's not OK. We shouldn't be doing this in this day and age. And yeah, that's what's so important for me.

Nic Crosby, Host:
Thanks, Lucy. I'm wondering if Ava, maybe you have something to add to what Lucy was talking about?

Ava McAuley, Guest:
Yeah. Well, I feel like the campaign obviously is really important and because again, I can't really disagree with what Lucy was saying. The system doesn't really that we've got allowed people to put people first above, like sort of different policies and practices and stuff. And nine times out of ten, half the professionals that are making like best interest decisions, what they think is best, usually they have never even met the person - never had a conversation with the person. And don't even meet them prior to having meetings. So how can you say that you know what's best? And they don't.

And then we've had all these different policies and laws and guidance involved, you know, going all the way back from, like, the Winterbourne View scandal about how people were treated. The transforming care programme that got invented, but however, has never been enforceable. So, we've had all these different things and guidance, and nothing seems to change. So now we need to come forward and try and drive this change.

Nic Crosby, Host:
Thanks, Ava.
Pam - when we were coming online, I think Lucy mentioned that you and her had been working together for quite a while and there was really good support between you. And I guess something about the campaign also brings people with lived experience together and you're supporting each other, so you're part of a community of people who are, you know, advocating for and arguing for a much better life for people. Have you got anything that you wanted to share on based on based on that?

Pam Bebbington, Guest:
We don't have to lock people up. The way the campaign also champions. -that's part of one of our campaigns that's been going on for years since Winterbourne View and still nothing has changed on that. So, we'd really like the people to come out of hospital and live with the best support they can in the community, where we've lived, I've lived in the committee for many years now, which really great.

Simone Aspis, Guest:
Yeah.
I think one of the problems we've got is the government's refusal to see this as one of the biggest human rights scandals that we are currently facing at the moment. That people with a learning disability and autistic people are the only group of people that can be detained in hospital on the grounds of disability on just some whim - on whether you know, your behaviour that it relates to your impact right to your autism is proving to be a risk to yourself or to others in community. You do not need to be involved in crime. It's a perception about, you know, whether you're fitting into/within the society we live in, which is becoming far less tolerant towards people that do not conform to the social norms. And as long as we have a mental health law that allows hospital detention, and you do not have a community care law that actually gives people an absolute right to the community, to the appropriate community care. But I mean, even within the Community, then you're always going to always end up having people that end up in in hospital and that's a problem we've got.

You've got the alternative. You know, local authorities are like OK, we're not providing very much support or no support or bad support for people with learning disabilities and autistic people because they know as soon as they're detained under the Mental Health Act, then it, then the responsibility goes straight, you know, onto the NHS.

Nic Crosby, Host:
Ava, you've got some personal experience that you're keen to share.
It probably illustrates a lot of what Simone's talking about at the moment. Simone's talking about the campaign and the big scale. Maybe you want to share your personal experience as a way of really illustrating what that means to you.

Ava McAuley, Guest:
Yeah. So, this is actually quite a recent experience. So, last year I had my support package basically terminated by one social worker that had never had a conversation with me. He reduced my hours from 24 hours to 8 hours without any consultation or involved. It didn't involve me or any of the professionals involved at the time, completely breaching the Care Act, and then he left me in crisis in the community where I didn't even know what was happening from one day to the next, and I had to survive and literally it caused my mental health to deteriorate. I could no longer survive on that so, obviously, last year I spent an entire year in hospital.
Not because I needed hospital care, but because social care failed to support me in the community.

Inside, I had no control over my own life. I was over restrained, pinned to the floor, injected with medication that left me drowsy and disconnected.
One night, after a forced injection I don't even remember going to sleep.
That helplessness, and that feeling of being completely powerless, was terrifying. Within my first few weeks after an autistic meltdown, I was put in seclusion, four walls so thick that even my loudest cries went unheard.
There was also a time when I was taken to an outpatient appointment while under deprivation of liberty safeguards. Three men escorted me. They searched all my bags as if I was carrying weapons, even though there was no evidence in my history that I'd ever done that. No privacy, no dignity.
When I became distressed, they pinned me to the floor and even threatened to strap me to a chair that I couldn't move or speak. And the damage from that still haunts me today.

Even now, nine months after being discharged, the trauma lingers. The thought that professionals can abuse their power like that is something I can never fully get over. As an autistic person, I wasn't seen as someone with specific needs. I was treated as a problem to manage - a maniac to control.
And I kept asking myself constantly, "will I ever get out?" Or is this how I'm going to survive forever because the statistics are incredibly high in the UK of people being detained when they shouldn't be detained.
A violation of our human rights should never be acceptable, and you wouldn't do this to a criminal. So why punish those who need support the most? No one should be penalised for being different and what I went through wasn't care. It was containment.

The system needs reform, real reform, change that actually is going to have a positive impact on people like me. Support is supposed to help someone thrive, not to break them down. We deserve dignity. We deserve safety.
And we deserve the chance to truly live, not just survive, being subjected to that treatment felt utterly dehumanising. And it's not just about me, it's a system that is failing autistic people and those with learning disabilities again and again.
And the professionals responsible need to be held accountable. That's why I'm speaking out. Because silence only protects the system. So, I won't stay silent anymore.

Nic Crosby, Host:
Thanks, Ava. I mean, first thing, much respect to the strength that you've found to Share your story. I think it brings to life more than anything else can exactly why this campaign that you guys are a part of is so important and I think the most important thing is that all of us try and give yourselves as a campaign, the chance to speak out loudly and for people to be heard. I'm sure Lucy and Pam if you shared your stories, they may well share much that Ava's been explaining, and it's always really difficult to hear because you're hearing from real people about their real experiences, of what, what have what has happened to them.
And I can't imagine the trauma that it lives with you so much respect for that over. I think it kind of, I guess it bridges us to the other part of the conversation, which is that's a picture of really poor support, a time of crisis.
Decisions that aren't involving you and the repercussions of that, I wonder, Lucy or Pam, maybe if you'd like to kind of talk a bit about good support on what, what does good support mean to you?

Lucy Bowerman, Guest:
Yeah, I'm happy to start on this one. I think the biggest thing for me is good support doesn't just include services - and that is what services often forget. Actually is that they are just one tiny piece of a very large puzzle when it comes to support for people.

I mean, ultimately the most support that I have had is friends, family, where I live. I live, I live on my own in my own flat and that that for me is incredibly supportive to my well-being, pets as well. I have a pet frog who has made the world of difference to my life. And when we talk about support, I think we also need to remember things like connections, so connection with other disabled people. Again, for me being part of campaign groups sort of going social and support groups, just getting out and about in the community and doing the things I love, is a big part of what supports my well-being. Aside from everything that you may see within services where actually support is often very restricted, limited. It's not person-centred.
So yeah, that's my views on it.

Nic Crosby, Host:
Mm-hmm.
Pam, if you were thinking about what good support means for you?

Pam Bebbington, Guest:
First of all, having my family around me, so I've got that support around me. I mean, I've been married 27 years, so I have my husband and my step kids around me and also friends, also because if we didn't have my friends there is no support out there for us.
I mean, before I got married and now that stopped because I got married, completely stopped. No, no support whatsoever. The only support is my friends and family.

Nic Crosby, Host:
I think it's really noticeable both of you are talking about the importance of connection and friendship and being part of something. Not very much of that is about paid support. Actually, that's about what is really important to you. So, if people are listening - it's about listening to what's important to you. I'm wondering, Ava, if you wanted to add something about good support after explaining what bad support looks like?

Ava McAuley, Guest:
Yeah. So basically, what good support, I would say looks like and I've got quite a few different examples of it. So, since leaving hospital, being with my chosen support provider has been a huge relief. I love their values. They are truly unique compared to anywhere I've ever encountered. But what's really special is how bespoke my support is. From the specific organisation, my support team is entirely built around me. They ask what my ideal support worker would look like and then they find people who match; even looking for shared interests and compatible personalities.

It's not about forcing me into a pre-existing system or model. It's about creating something around me. I've got really amazing relationships with the directors of the provider. Their model is built on relationships, connection and compassion.
They don't just recruit anybody, they build a support team with me and for the first time in my life, I feel truly seen for who I am.
This is what person-centred support looks like in practice. It's not about 'policy on paper', it's bespoke, relational and empowering, and it shows that when support is humanistic and built around the individual, people don't just survive, they thrive.

Nic Crosby, Host:
Totally. Thank you, Ava. I couldn't have put that better myself. Simone. I guess you are the coordinator for the campaign. Can you just say a bit about - you mentioned it to begin with, but a little bit about how important it is that it's a disabled people's campaign, led by disabled people - for disabled people.

Simone Aspis, Guest:
Yeah. So obviously, throughout history has always told us that it's the people who are most affected by the campaigns that are lead, that lead the campaigns are other ones that are more are ones who are going to, you know, make significant changes so we can look to, you know, campaigns that are led by the LBGQI communities, Black people, women, you know, women's struggles. And you can see that, you know, legislation and policy whilst far from perfect, has only been brought about by people who've been most affected by the lack of it. And this clearly, you know, this clearly happened right up to the 1990s. So, I've been involved in disabled people's campaign work really since back in the day when we didn't have any anti-discrimination legislation. And to this day I do not believe for one minute we would have disability Discrimination Act, legislation anti-discrimination legislation, the UNCRPD, the UN Convention rights of a Persons with Disabilities on the agenda without disabled people taking the lead on this campaign and it's exactly the same thing around getting people out, hospitals, you know, really bringing home the complete scandal that was so that a thousands of people who are locked up in hospital and thousands of people who are at risk of being detained. So, we mustn't forget that this is not just about "Oh yeah, this is just about few thousand people who are locked up in hospital." But it's also that increasingly, the fear that a lot of people with learning difficulties and autistic people have in being detained in the first place, and the impact that that will that will have.

Nic Crosby, Host:
Yeah, I hear you so much, Simone. I mean, certainly the linking, I link quite often with children's services and my worries are that we think about the people who are in hospital at the moment. But my worry is that there's no thought being given to
young people who are getting caught up in the system before they're 18. Lucy, do you want to add to that?

Lucy Bowerman, Guest:
Yeah, I'd. I'd like to, if that's OK.
I mean, I think the important thing about disabled people leading these campaigns is that, you know, you can do all the degrees in the world, read all the textbooks in the world. But unless you are disabled yourself, you're not going to know exactly what it's like to be us and we have spent years and years - I'm talking hundreds of years being spoken over, being spoken about, not being involved in discussions and decisions about us and our lives, and I think it's time for us to actually take back that control, because we are the ones that know what it's like. We're the ones that are going through this. So, you know, our voices should actually be at the forefront of that.

Nic Crosby, Host:
Rock on. Yeah, totally. I totally agree. I wonder, Pam or Ava, if you have any final thoughts for, for those people who are listening at the moment?

Ava McAuley, Guest:
Yeah, I would say I can't really disagree less.
There is too much of people that are like kind of don't have the personal experience, however they talk too much about us and don't and don't involve us in in anything because there's too much focus on more like the deficits or something's wrong with us or that we need to be fixed or we need to be cured. So, there isn't that like level of inclusion that there should be.
But this boils down away from like research. People have just known one way, which is just to talk about us and not with us. In my training, obviously, I focus a lot on Co production, which is about delivering the training alongside somebody with lived experience, because I can't even disagree less. Nobody is going to know us better than we know ourselves. So yeah. And then obviously that is what mainly needs to change, is how people sort of involve us and deliver that support in conjunction with us - and not to us.

Nic Crosby, Host:
Yeah.

Simone Aspis, Guest:
I mean, it's interesting though. I mean, if you look at the biggest movements we've had around progress around disabled people's rights and inclusion, a lot of the solutions have come about from the campaigns that disabled people have led on. So, for example, anti-discrimination legislation, the direct payments support system; where disabled people can organise their own support with their own personal budget, where they can buy and where they can recruit their own support workers to work with them in a way that is in a personalised manner. When we look at advancements around inclusion, inclusive education, access to work - they all come from the solutions put forward by disabled people. Which is one of big things, and I think what's happened is, we went through a period where there was more Co-production, I.E., around working with disabled people, to revise solutions to the problems that to some of the challenges that we face. Increasingly over the last number of years, that has become far more difficult. And if we would say, well, you know, learning from our experience that if we were, if any government is genuinely wanting to move people out, of hospitals and eventually to shut them down in terms of the psychiatric hospital systems. If any government is genuinely looking to transform the hospital system and move people out hospital and stop people from going to hospital in the first place. Then there needs to be a commitment to Co-production.

Nic Crosby, Host:
Yeah, totally. Totally - at all levels nationally and...

Simone Aspis, Guest:
Nationally, at ICB level. And I think one of the big asks that we have at the at this very last stage on the Mental Health Bill - is that the Mental Health Bill, at the moment, only places a limited duty for ICBs (Integrated Care Boards) to take into consideration the voice of people with learning disabilities and autistic people who are detained in hospital having a care and treatment review or on or at a risk register, there's nothing at any other level to be for any Co-production. There is nothing in the legislation, that basically places a statue duty on ICBS and government to Co-produce. And that's really, you know, that is a real big failure, yeah.

Nic Crosby, Host:
Yeah.
Last couple of words, Pam, and then I'll come to you, Ava. So, what would you like to add, Pam?

Pam Bebbington, Guest:
I'd just like to say, involve the people that are the most affected - like the people with autism. Just involve us as we go along with this process. But have the government and that involved. Just listen to what we/they have to say rather than rejecting them - sort of thing.

Nic Crosby, Host:
Yeah.
Lots of other people seem to get listened to, but I'm sure people with real experience and disabled people don't get listened to, do they? In the same way, Ava.

Ava McAuley, Guest:
Yeah. So, like just in general, like a couple of things that could sort of be better and there's some examples. And then I'm just going to make a final statement on the Mental Health Bill.
So, I've found out, obviously, even though got really good provider now, there are still some things I'm working on. And goals that I'm aiming for but mainly focusing on developing a reliable support team who are loyal, consistent and who really understand me. I obviously it'd be good that I'd have more when I have the opportunity to have more consistency in my day-to-day life and spend my days thriving, doing things that help me reach my full potential, not just surviving from one moment to the next. But support isn't just about being safe and managing challenges. It's also about creating a life that's meaningful, empowering, and full of opportunities. And that's what we're building towards step by step, people who truly see me and work with me to make it happen.

Nic Crosby, Host:
Yep.
I guess, I think we could probably talk a lot longer.
I'd be really interested in finding out more about the solutions that you have as individuals. But I think all of them come together - people are talking about Co-production and I work a lot with a couple of very strong self-advocates who are part of our team at the Small Supports group, and for them the most important thing is that people are involved in their own lives. Our people involved in all these decisions and all the discussions and they lead the way that support is delivered. So it's not just about Co production, all the kind of different.
Levels the most important thing really, is that individuals have a voice, well, not just a voice, but it's always reminded that it's about their lives. As I say, I think there's a big conversation that we need to keep going. I hope that this is a beginning of that.

Simone, we'll make sure that we launch and we share all the information about the Free Our People Campaign.

Simone Aspis, Guest:
I'm mindful that because we set up the network, so nobody feels aligned to an existing, you know what I mean? So, all the individual campaigns can be equally respected. And I'm very mindful that. Because that's what people have come here to represent; we bring people home because we had a long conversation with at the beginning. Yeah. Do we want to broaden out? Yeah. So, we created an independent identity just so that everybody felt that they their own local identities and organisations can be truly represented, so I just want to be mindful of respecting that continuing. Free Our People Campaign set out of Bringing People Home from Hospital.

Nic Crosby, Host:
Institutions are no solution.

Simone Aspis, Guest:
The other thing - the last thing I would like to say is, Stephen Kinnick did admit at the dispatch box said that any anything that's happening from a Mental Health Bill or Act will not be successful unless there is, unless people with learning difficulties and autistic people are involved throughout and thereafter, in terms of Co-production and being engaged, and we would welcome that commitment to put in practise. Yeah. So yeah.

Nic Crosby, Host:
Yeah.
Thanks, Simone.