Human Rights and Coproduction

Nic Crosby, Host
Welcome along to our third podcast of this series of podcasts that we're doing for Small Supports this Autumn in 2025 today. I'm really happy to be joined by three people who've kind of all done their bit to keep me on my toes.
And focused on what small supports are about i.e. human rights and having a good life, and so I'm going to be introducing in a minute Charlie Clement.

Charli Clement, Guest
Hi.

Nic Crosby, Host
Kirsten Peebles.

Kirsten Peebles, Guest
Hello.

Nic Crosb, Host
And Sam Smith.

Sam Smith, Guest
Hi there.

Nic Crosby, Host
And there'll be a chance for everybody to kind of say a bit more about what they do and why they're here in in a second, I guess for us at the small supports. And for me, the Article 19, the right to live independently and be included in the community is the core of what we do.

I've been challenged numerous times, many times before I was working with small supports to see this is the as the resume detra of the work I've been involved in and everybody else on this call is - and the small supports, so I think.
My memory is that when I started this job, I travelled up to Glasgow to meet Sam and the team and Sam had a really clear way of kind of seeing human rights not as an aspiration or something that we should be aiming for or as best practise, but it's actually this is a simple statement of how life should be, and Article 19 the UNCRPD, the United Nations Convention for the Rights of Persons with Disabilities, is written by disabled people and it's their statement on how things are.

Now, today, we're not just talking about the UNCRPD, we're talking about our British human rights law and the experiences of Charlie and Kirsten have, in particular in training people and what they encounter when they're out there training. Anyway, that's enough of me, Sam, by way of introduction, could you introduce yourself and
Maybe just very briefly add to the idea of human rights are, oh, this is what good is.

Sam Smith, Guest
Yeah. Hello. I'm Sam Smith, and I'm the CEO of an organisation called C-Change Scotland. We are a small supports organisation that's been operating for almost 25 years. We are an explicitly human rights based organisation and the reason for that is that we wanted to be bounded by something that was recognised, that already exists, that that's acknowledged internationally as the the floor, the very least we should be doing to ensure that people have the opportunity to live a good life.
And it's that, it's that idea that it's the very least. Now that's not what we should be doing, but it is the very least and rather than keeping on having discussions about new guidance, new frameworks new different ways of articulating and subjective ideas about what might be good. These things already exist, and we haven't achieved them.

So I think rather than making busy work spending lots of time writing other things up as an organisation, we, we believe it is our job to make those rights as articulated, not just in the UNCRPD Article 19, but all of the articles but independent living, which is the Article 19, make them a reality in our day-to-day practise - so that so that.
any compromises that are made are not at the expense of the people that we work for and their families. Because we use these human rights frameworks to guide our work.

Nic Crosby, Host
Thanks Sam. Kirsten, could you kind of say hello and introduce yourself and maybe
give a parent's view on what you're hearing from Sam and and the importance of human rights.

Kirsten Peebles, Guest
Absolutely. So, I'm Kirsten Peebles. I'm basically just a mum and mum, my son's autistic, and he spent most of his teenage years in mental health, inpatient units.
He was one of twenty children subjected to the highest levels of restricted practise in the country, and by that I mean all kinds of restraints: physical restraints, mechanical restraints in handcuffs and belts and transported in cages, chemical restraints. Whereas drug to to look like a zombie and long periods days on end in seclusion.
My reflection on human rights is we all have human rights. But this is about what we're talking about today and what my experiences were about our relationship with the state and the Human Rights Act and its protections of US against what the state might do to us, and in my experience of my son, the state took control of all of our decisions. His and mine decided when we could see each other or speak to each other, decided, you know, forms of treatment and I had no say in it whatsoever and his experience was so traumatic that it was really devastating that I couldn't be there for him as a parent, if you can imagine not being able to hold and comfort your child when they're in their darkest moments when they're hurt and afraid.

So that led me on a journey. Self-taught initially, to find out about human rights and to use that knowledge to become a strong advocate and to change his care and treatment to be more rights respecting and eventually get him out of hospital.
So my reflection is not just human rights in in principle, and it's all having them, but in how it's a living, working law and how we all need to be aware of those rights to get the right treatment, not only for our loved ones, but for ourselves as well.

Nic Crosby, Host
Thanks, Kirsten. Charlie - a chance to say hello and maybe follow what Kirsten's been saying.

Charli Clement, Guest
Yeah. So, I'm Charlie Clement. I am an autistic, disabled, activist, writer, speaker, etcetera. I've spent the last five years working in the system after my admission as a teenager aas very traumatic and very unnecessary. So, in 2020 I started working with one of my local areas on their key worker pilot for autistic people to keep them out of hospital, and it kind of spiralled from there. Working with lots of different third sector organisations.

And my knowledge of things like human rights and the system and the law has really developed over that time as well as my understanding of what I actually went through and the things that I should have been able to challenge at the time that we were very much not aware of - and I think it's quite shocking to be years down the line. And then I when I started working for BIHR and they were kind of saying well, this is against the law and that's against the law. And you realise just how much you've been subjected to without any knowledge of it. So yeah.

Nic Crosby, Host
And just for information, BIHR is the British Institute for Human Rights.

Charli Clement, Guest
Yeah.

Nic Crosby, Host
Yeah, both of you. Kirsten and Charlie. Do I know you do quite a bit of work through for BIHR and quite a bit of that's training. Can you maybe just share some experiences of training people may be in inpatient services or in support provider services as part of the work that you do about what you encounter because it does feel like the root is as a whole lack of knowledge. But what happens when people start to realise that?
What they're doing is kind of contravening people's ordinary human rights.

Charli Clement, Guest
So we were employed by BIHR, originally to Co-produce and then Co-deliver the NHS England CAMHS human rights incomes units programme, which has a lengthy name. And so that was initially, two sessions for every staff member in the country in a campus unit, and we delivered that for. I wanted to say two years maybe for maybe two and a half or three and that was very like I said, that was for every staff member at the time. Obviously, staff turnover is super high.
So when they discontinued that programme, it was quite a difficult thing to accept that, that there's a lot of stuff that will not have had that. But at the time it was everyone and I think that it was fascinating to see the development over those two sessions and the amount of things that people do not.
Realises against the law, there's so many parts of policy that happen in in CAMHS, units that are just hospital policy and staff just accept them, particularly around things like possessions and what we would call leave, where you're allowed to to go out or not.

Things like that are just seen as as normal, taking away mobile phones, taking away access to certain possessions. It's not inherently against the law. It can be done when it's lawful, legitimate, and proportionate, but it often isn't in those settings. So, the light bulbs that go off when you do that sort of training are huge.
And the pushback that you get is is simultaneously huge. It really depends who you're in front of, I would say, and it's it's definitely a difficult thing to navigate and something that I really had to learn how to position myself and how to talk about it without being combative, I guess. I don't know what Kirsten would say about that sort of experience.

Nic Crosby, Host
Mm-hmm.

Kirsten Peebles, Guest
Yeah, absolutely. Just thinking specifically about the CAMHS staff thinking about how initially they're going to human rights training, they might have had in their minds, it's about the big rights, the absolute rights. So the right to life versus the right prevent inhuman and degrading treatment. Those are the kind of things that hit the news. Those are the kind of things there might be legal precedents on. But what you where you really saw the light bulbs were the kind of the, the non-absolute rights. So things that Charlie's just referred to about possessions, about access to leave about even just getting fresh air access to your education and how that can be curtailed, access to your family. Keeping in contact with your family, with your siblings, with your friends, all of these things are noted down in the law itself, the Human Rights Act is really essentially everything is about who we are and what we need to be ourselves. And that being protected. And I think what was really amazing and where you really saw the change in attitude was when we started to talk about restricting rights and the three stage test, which Charlie's already referred to, it's shifting that mentality from just because you can doesn't mean that you should and putting in place those three protections. So if you're thinking about restricting a right.
Is it lawful? Do you even have the legal backup to restrict someone's rights? If you do, is it for a legitimate purpose? Are you doing this for the right reason? And then finally, more and put most importantly, I think in these settings is. Is it proportionate? Is it the least restrictive thing you can possibly do? Have you tried everything else?
And that's where, when Charlie says about blanket restrictions in hospital policy, they're never rights restricted rights respecting because they're not based on the individual. It's a it's a policy for everyone. And that does not with uphold the rights of the individual.

And it was really great to see people taking this on board and realising also it's not just about the big decisions quite often it's about the small decisions, the 'everyday' decisions where you're restricting someone's right when you don't need to and you shouldn't be doing it. It's an attitude of being more rights restricted.

Of being more rights respecting and through that I really saw with lots of members of staff how they could connect that if they were rights respecting from the beginning, they could actually avoid the big issues later on they could avoid the.
Since the big incidents, there's harm to staff harm to patients that lead to these big restraints and seclusions and actually seeing that change was was really quite powerful.

Nic Crosby, Host
Yeah, yeah.
I I really liked the the because yeah, I was nodding my head when I was listening to you, Charlie, and it because so much of what you're talking about was you were encountering the culture within the hospital and then you were talking Kirsten about the attitude across the hospital. Then you used the word, which was actually.
What you were setting out to facilitate, which was a change in that culture from rights restricting to rights, respecting and I'm wondering Sam, thinking about what you do at small supports is how do you cherish and conserve and facilitate that rights respecting culture, I guess.

Sam Smith, Guest
Well, because we're we are an explicitly human rights-based organisation. The starting point is that each and every person that we work for and with has the same rights to choice, control, agency, as we do so, one of the prevailing notions within social care is that if we have policies that these policies should be applied to people equally. And that actually makes no sense in the privacy of your own home.
And organisations that adopt blanket policies around health and safety and don't take account of the individual choices, needs, and aspirations of the people that they work with them for - are not respecting the person's right to a private and family life.
The idea that in your home you get to make choices, so it may sound really mundane, but it's in the mundanity that we we know whether we're being heard and respected and that our dignity is being preserved.
So, if you were being supported by an organisation and they have and you require support with your personal care and that's determined by a policy, whether that's about how you have a bath, whether you have a bath thermometer and whether there's a specific way that you you need to be supported and that that overrides your choice, your control, your ability to determine how you want that to happen. Then potentially that's not respecting your bodily autonomy, your dignity and your respect.

And it sounds mundane, but it is in those individual choices that we know that we are being considered as an equal human being, with a dignity. In the long stay institutions, one of the the things that used to happen was that big urns were made big. Huge kettles were made with tea, and that tea would have milk and sugar.
And that's how people had their tea. You would think the choice over whether you have your tea the way you want it is that is that a massive issue? Well, it's indicative of not having choice and respect for your own tastes and wishes. And and I think it's sometimes we think of human rights as lawyers and courts, judicial reviews, I think of it as those things like it can be a really powerful mechanism for change.

But it's also in those everyday, detailed, respectful relationships that say because you're supported, it doesn't mean that you have fewer rights to autonomy, choice and control.
And it's a focus on that that I think is the difference between a human rights based organisation and the culture that supports that and organisations that are compliant.

Nic Crosby, Host
Kirsten.

Kirsten Peebles, Guest
Yeah. I just wanted to follow on from Sam really and absolutely agree, to me, human rights, it's about, it's about the individual and it's about relationships. I could certainly you know, be employed to offer training to staff on human rights, to work with an organisation on their policies more rights respecting based on legislation, but the way we really make a difference and really change these cultures is in the individual relationships.

And one thing I reflect from working with people who are working with autistic and learning disabled people in their own homes in the community, was that you have to really know a person to know how to respect their rights. You have to know them well. You have to understand, like Sam said, how they take their tea, what's important to them, what are the things that you know, really make them happy, comfortable. What really gives them the direction in their own lives, and quite often these big decisions are made by people who have never even met that person, and that to me would be the big thing that I would change, that prioritise the relationship. We talk a lot as as people with lived experience about the value of relationships and the need for trust. And I wish that people within the system would would hear that and would take that seriously, because I think if you're working on a one to one basic human respect approach, "I know this person. I like this person. I know what they need." Then you don't need to refer to legislation. You do a lot of this naturally.

Nic Crosby, Host
Yeah.

Charli Clement , Guest
I was going to say I think alongside that there's a really important thing about people having language for advocacy. I think the one of the things that me and Kirsten have really had a role in is giving people human rights language and it's not necessarily language that people as individuals should have to have. I don't think that young people and their parents and their families should have to know legislation and and have the have the language.
But when they do have it, that advocacy can be clearer and it means they are more likely to potentially get to a point where they get what they need. And I think that's something that it's, I find it a real it's a real fight within me.
About the fact that I don't think they should have to, but actually there is a real importance in that as well.

Sam Smith, Guest
I find that really interesting, Charlie, because, I actually I think having the language of human rights is one of the most powerful things, and not just in in our, in our discussion with the state on a local level or even a national level.
I think having the language of human rights so that we know we have a common language around the the very basics of what good looks like internationally. So, if you have a conversation in Slovenia or if you have a conversation in Australia or in
South Africa and you refer to the UNCRPD, you're referring to the same thing. And I think there's a tremendous power in US recognising our international respect and obligation for each other. That goes all the way from that international realm into Eleanor Roosevelt's 'small places, close to home', where we feel them in our day-to-day relationships and our interactions with each other or on the street - with our neighbours, it is a way of being in the world that says you have the same rights as I do by the very nature of the fact that you're a human being, and in that commonplace of humanity we meet each other.
With respect and dignity, I think that the language is just such a powerful instrument for learning and education and communication.

Charli Clement, Guest
I think it's really interesting for me, as someone who didn't have that language, but was expected to have so much of 'A language' like the minute I walked onto the ward, there was so much jargon that you're just expected to pick up about sectioning, about being informal, about Gillette competence.
There's a whole list of other things that you just have to pick up and learn, and the legislation and you know, somebody who's been on the ward for six months is the one that tells you, rather than the staff - and you just you just pick it up. But there was none of that for human rights. And I always see that as a power structure issue. I always see that as something that probably had intent behind it, like I don't think it was 100% intentional to 'cause that power balance by staff.
But I think the the lack of language and the lack of that power on a ward level meant that we didn't have the ability to do that, that advocacy. And I think it's quite fascinating to me how that works and and the lack of it and what that causes in that sort of environment, that's very intense and and really does have a true power imbalance.

Nic Crosby, Host
I think there's there's this number of strands that people are talking about. There's Kirsten was talking about relationships and then Sam and yourself Charlie, were talking about well, actually, human rights language means that we're all kind of potentially and then an equal start to those relationships, but it also gives people power within those relationships. And then you're talking about actually the power over of the the workforce over the patient or the, you know, and and then and Sam's kind of talking about the very different, the very different relationships between support worker and supported person at C Change. I'm thinking because one of the things I know that that brings that to life because I was one of my was one of my queries. How do you bring all this to life?
And at C Change, you sit down with the person and say, OK, so how much support do you need from the support advisor? You know, you actually, you know, I'm sure, commissioners elsewhere in the country here, quake when they you, you, they they hear that C Change actually ask the person how much support they want and how much they're going to be funding to that, but it's a very real way, isn't it? Of, of making human rights and the right for people to have a say in how they live their life, because otherwise it can be quite nebulous. And it's like, So what, you know, what are we really doing actually, you C change.

Sam Smith, Guest
Yes.

Nic Crosby, Host
Do you want to say a bit more and then I can see Kirsten's up for? No, no, no.

Sam Smith, Guest
Yeah, because it's not abstract. It's not abstract at all. It's concrete. So, but before any changes in legislation, would it be self-directed support or individual budgets, C changes position was that when the money.
When the state paid money over for someone's support, it was the person's money. So that was before the legislation. So we we have always regarded the person that we work for as being the person we work for the the person whose budget is.
So that orients the organisation to serve a constituency which is the people that we work for with their individual budget and everything else in the organisation is shaped to support that and and that's the importance of language.
But the structures and the processes in the organisation mean that, I know as the CEO of the organisation, my wages are paid by the people we work for. I have to deliver for for those those people. I have to be accountable to the statutory regulators' etcetera. But primarily it's the people that we work for.

And the only measure of good in the organisation for the people we work for is if they, they or their loved ones say it's good. It doesn't matter largely what anybody else says. The person we work for is the determinant of whether we're doing a good job or not.

And in order to support people to to be able to tell us what they want and for us to be able to report on whether we've been doing what they want, we frame things in human rights terms. And and that is to ensure that the full weight of human rights thinking, philosophy and legislation is there behind and supporting the person we work for - to be able to make sense of a system that quite often looks to do the other. So if I give you an example because that all sounds very kind of lots of words.
One of the the young people that we're working for, he's autistic. He's in his, he lives in his own home. When we first started getting to to work for him, he was actually excluded from school and we started supporting him to try and ensure that he didn't end up getting sent away somewhere and he's doing well in his in his home.
There are things that we can always do better and we continue to work to try and to do better, to continue to support him, to live his good life.
Local authorities find this kind of difficult when someone actually is living in their good life and they immediately begin to think, 'oh, you know other ways that this could be done cheaper.'
So the suggestion there's been muted for for this young man as well. He's doing pretty well. He's not at risk of being sent away somewhere. Maybe he could live in a more congregate living arrangement. And the response to that is he has a right to a private and family life. He has a right to independent living. So you know his his mum and others who who love him and know and care about him are are supported to use the language of human rights and the weight of the legal framework of loving your life. Those things are not as not challenged and undermined in the same way for those of who are not disabled. That's why those who are most at risk need the additional protections of other convention rights to support their right to have what others sometimes take for granted.

Nic Crosby, Host
Kirsten

Kirsten Peebles, Guest
Yeah. Just to follow on from that, I would really like to address the fallacy that that human rights respecting care is more expensive because it's it's absolutely the opposite. What what it is is it's better value for money. It's more sustainable. It's more likely to be successful. And in actual fact, what you're paying for with human rights, respecting care is not additional stuff. It's not additional hours, it's flexibility.

What I hear so much through my son's experiences. 'Computer says no.' What he needs because he doesn't fit in the standard mould of the way their frameworks are set up and the way they deliver care is that we just can't provide the care he needs. We can provide exceptionally restrictive care, which basically makes him a prisoner in his own home and I see unfortunately a trend of hospital-light where community, you know, living in your home is a bit is not that different from living in a hospital, but it's that lack of flexibility that lack of agility that systems seem to be wed to, which is why, unfortunately, you know, you don't have consistently across the country marvellous organisations like C chang, and Orbis, who supported my son, really. You need. I would love to cry out to to councils and to to local systems. 'Stop being wedded to' this because what you're offering is something that's more expensive and and abusive to a person because they don't fit in the mould.
And the alternative to that is people like my son at the moment receiving no care at all because he cannot and will not fit in within the system that would abuse him. And so really, how can we change that? How can we get the message across to the people holding the public purse string? We understand there's few resources, a lot of competition for resources, but you know on a very simple level with my son's care package, it was the Council wanted to put in more staff to escort him to school with two members of staff that our own care provider said that is not necessary and will actually be counterproductive.

But the Council did not want to do that, and it's that mindset that I think really needs to be challenged and we need to have more small supports on frameworks or the ability for councils to work outside of frameworks more - when it's the right thing for the person.

Nic Crosby, Host
Yeah, yeah, I kind of definitely go with that one. Kirsten, I think there's something about you do the right thing by people. This is one of our colleagues, and it might be used as well, Sam. But I know Doreen Kelly at beyond them. It's it's very much. You do the right thing by people and it's it's good for everyone.
And you respect people's human rights, you know, it's simple, isn't it, to take away privacy from each of our lives - and we would very quickly feel very distressed if we didn't feel we had private time. Private space, private relationships, privacy in our lives. And yet that's a human right. But if you do the right thing by people respect people's right to have a private life, then it works well because it's something that's important to each and every one of us. I think. I don't think it's complicated.

Sam Smith, Guest
Yeah, I think we have a brittle system.
And it means that people like to set things up and fit people in and hope it works. And actually we're not. Human beings are not brittle. Generally, we are flexible and malleable. We grow, we evolve, we develop. And so it it makes no sense to Commission a fixed thing and expect change. You Commission a, A, a group of people, an organisation that walks alongside an individual and their family and says 'we're here, we will, we will work on how to do this. The support you to get a good life,' keep on evolving and changing what that looks like and over time, particularly where people have had the idea that more resource is better. What we know is that people don't want more. They just want enough. And so people who've been, you know, it's been advised or required that they require five to one support, which is really only to do with physical restraint and a five man pin down.
The question has to be why is someone so distressed, so upset that that's the best we've got to offer?

And how do we ensure that never happens again? And how we ensure that never happens again is by listening to that person trying to work out.
How we got to there in the first place and making sure that doesn't happen again. But that's not about changing the person. That's about changing us and that's the bit that we find as a system so hard to do.

Nic Crosby, Host
Yeah, that's a simple one of the qualities of small support is the understanding that if someone's showing distress - then it's it's down to the support team and what they're doing. It's not down to the person. It's not about 'fixing' the person, it's understanding about what we can do better by that person to help them.
And and and the place they're in.

Sam Smith, Guest
Yeah.
Yeah, and sometimes just to be clear, sometimes there is a health component to that. So sometimes someone can be distressed because they are in pain discomfort. They're not able to say. And what makes the difference there is it's not saying it's the person's fault. Because being physically and well as in person, but it's recognising that if you know somebody, you know that that there's something going on and being curious enough not to blame, not to judge, but to try and work out and that we've literally this morning I had a conversation with a colleague about some work that a team were doing around somebody who wasn't able to say this, that things were not good for him, but the team knew they weren't and persisted even though they were, they were being. Other things were being advised by health colleagues. They persisted because they know him well enough to know there is something going on and and actually he has been admitted to a General Hospital with a health condition. But that's only because people knew him really, really well and weren't going on behaviour.

Nic Crosby, Host
Kirsten talked about it. Charlie talked about it. You talked about it. It's down to relationships, where people see people as as equal people and people understand if something's not going right, then something's wrong and we can do what we know and support the person to find out a way through.
It's all about that starting that we're equal human beings and there isn't a better or where you know it's it's seen people and the the the session that the discussion that we've been having and I draw it to close now really - but it's it's that that discussion about human rights is the basis for that seeing each other as equal and understanding that 'my right is your right' and and and it's it's not complicated.

We're kind of also alluded to a further podcasts that we're going to be doing in the future, which is all around.
Actually, how do you start that relationship and you know, building, building and understanding people's life stories. But we'll come back, you know, just watch out for that in the future. And I'd just say a big thank you to you all. It feels like it'd be very easy to talk a lot longer.

The core of what everybody's saying, though, seems really clear. It's yeah, it's just what I've been saying. It's what you guys have been saying about equal and seeing each other as equal human beings. And our rights are your rights.
We will be sharing information about your organisation Sam with the podcast. Charlie, I know that you've got a book. At least one book, if not two, that you wouldn't mind publicising and we'll put links up to that on the the podcast.

Kirsten, do you have a book that you'd like to be publicising?

Kirsten Peebles, Guest
No, no, but you can find me on LinkedIn.

Nic Crosby, Host
Yeah. And I, I, Kirsten and Charlie and Sam all work within the small supports programme and if people are interested in talking to them about the human rights side, then please just drop us a line. You can find us all via the small supports pages NDTi. And we'd all be very happy to talk to you. We do have sessions around Co production, and Charlie and Kirsten, we've got some pretty interesting things to say if you ask them to do a session on meaningful Co-production. But I'm not going to spoil the party.

Thank you so much for coming along today. I hope people have found it really interesting listening to this and look forward to catching up with you on the next podcast.