What makes for good support?

Nic Crosby, Host
Welcome along. This is our 4th podcast, and we're here to talk with Alexis and Tricia. Who can tell you all about themselves in a minute.
And this is - the we're launching a programme of podcasts this autumn, alongside a load of information, events about small supports, and if you want to know more about them, all the work that Trisha or Alexis do will be sharing information when we publish this in a couple of weeks time anyway, Alexis.
What makes good support and maybe a bit about yourself as well?

Alexis Quinn, Guest
So yeah, thanks. Thanks so much, Nick. My name's Alexis Quinn. I'm an autistic person. A number of years ago now, I had a mental health crisis. There wasn't much good support in the community. And I also access community, health and social care support now - after my detention ended.

Tricia Nicoll, Guest
So, Hi, I'm Tricia Nichol. Lovely to be in a room with Nick and Alexis. It's always wonderful. And I guess my, who I am is the my experience.
I've seen my fair share of the inside of lot psychiatric wards as well. Will no doubt compare notes during the podcast. I'm also mum to two young autistic folk and my mum lived with me for the last 13 years of her life so I guess when I think about support. I think of it across the ages as well. I think that's really important for me. So yeah, lovely to be here.

Nic Crosby, Host

That's great and yeah, and people caught on that the focus of it's all about what is good support. I know that that will mean talking about what's what's bad support as well because it teaches us. But we'll try and focus on the kind of elements of good support from your personal experience - and working alongside so many other people who need good support. So yeah, I started with you, Alexis. We'll come back to you.

Alexis Quinn, Guest
Absolutely no. I mean, I think you know for me and my family, I have two neurodivergent children also, and just watching them and the parallels to my experiences just growing up, you know, from the moment when you start to realise that your kid doesn't fit or you yourself don't fit and then you're entering the school system, that really reinforces the fact that you don't fit and all of that kind of sense of safety, I guess that many people find in their homes, you know, where parents have naturally kind of figured out, you know, what works and what doesn't from a relational perspective, a sensory perspective, a communication perspective and just that deep love and nurture that so many people have at home, and that's just not being there at school. So, I think for me, you know, that's the sort of really formative place where things can kind of go wrong. And we know that so much is going on, don't we - in the SEND World at the moment, where people aren't getting that.

Alexis Quinn , Guest
So I think that my difficulties, if you'd like, really started in school where I was, you know, up against this kind of neuro-normative - so the 'normal way of doing things' idea. And then when I had a crisis, you know, I had a baby and my brother died at the same time. That was all exacerbated because there wasn't that support available. It was very much of how we normally do things and you're not fitting. So that's going to be problematic. So, what we're looking for really from my perspective is that kind of timely agile, responsiveness in terms of some psychology, some speech and language, some occupational therapy. And I probably need an intensive support team right to come in and help create that kind of predictability and safety in my setting.
And and that really didn't happen for me. Trish, I don't know if that any of that resonates with you.

Tricia Nicoll, Guest
Yeah, I I'd love it. So that's a really nice. So I I would say yes to all of the above. And I think the other word that I just really, really add that I know will resonate with you, Alexis is that idea is about human. So, I want support to be human and there's just something really weird happens in all of our systems, education, health, social care.
When we get into that system that it stops being human and there's this weird. Do you know? It's like a parallel universe. And it's just so that I think that's the big thing for me is like there's a whole, hey, the whole education, we could do a whole podcast about the education system, couldn't we?

But I guess if we're thinking about when if you're just kind of trotting along in life and and then something goes on, you know you you realise that your wiring is different or you have some sort of something happens in your life where life becomes tougher or you have an accident or whatever whatever. It's a bit of your body works differently, or your brain works differently.
Then you get into this parallel universe, and this is how we do things in this strange parallel universe, and it's not usually very human. So certainly, that experience of you're in a real deep crisis - the world is a desperately scary place for you. We'll lock you up with a bunch of other people who are really struggling as well.
Who thought that was a smart idea, you know, is that that kind of stuff? And it happens for lots of different groups of people. It happens to older people. It happens to divergent folk. It happens to people, learn disabilities. It happens to the mental health world. Weird stuff, nonhuman.
And decisions made about how we treat people - that are just not human. It's the reason why I talk about my test one for Gloriously Ordinary Lives - is "would I want that for me or someone I love?" Because 99 times out of 100 the service response, the service land response, the answer is no. I wouldn't want that for me or someone I love. And yet we still do it.

Nic Crosby, Host
Right.
I think there's something in the middle this resonates with so many of the conversations are at the moment. It's, there's something if people connect to each other as fellow human beings, then that's the foundation that's going to produce support that works, but where people aren't connected as fellow human beings, fellow equal human beings, where there's an 'othering' or a distance and people aren't connected and hence don't understand, don't feel the distress the person may be showing or the experiences that the person might bring into the room. Then it's it's - you're never going to get good support. Really, I don't think. I don't know - maybe I'm generalising.

Alexis Quinn, Guest
Oh, I mean, what I think is like, you know, we could sit all day couldn't we and write a list of all the things, reactive strategies that we could use that would be helpful. And of course, that would be different for everybody. And I've just mentioned the few earlier, like psychology, that's for everybody.

But I think the proactive, which is the human bit, is about acceptance. You are OK as you are, even when you're really distressed, even when you're really upset, even when you're having the worst day - I still love you. Belonging and so many people these days are disconnected from their communities. So many autistic people don't have friends. So many people with learning disabilities, the best they can hope for is a van ride once a week. I mean, this is not OK. Accessing the Community, this language you were talking about. Tricia, you know, which just seeks to other. But the thing that I just want to bring to the table today is, what I'm starting to call like 'Commoning', because people talk about connection or we need connection, but connection can be bad. Connection can be perverse, it can be fear mixing with fear, staff fear mixing with the person's fear - the family's fear mixing with the person's fear. Then you go out into the quote - unquote "community" and people are staring at you and the connection that you're having isn't great.

So, I'm starting to talk about Commoning and what I'm talking about there is, let's not just focus on people's differences like, oh, this is different about you. We need to fix this. Like, we have to look at what's similar. And I, for me that really speaks to what you were talking about earlier, Trisha, about that human to human.

Tricia Nicoll, Guest
Yeah, I love that. I really love that. Alexis, I think that idea of we are - so, it does go back to that the language piece which is the the boxes we want to put you in. So who are you? So I think going back to what you said the beginning about being able to get support from a various different professional groups. I don't disagree - my
And would be when those different professional groups see you as the other person who's different, who needs fixing, rather than walking alongside you. So I love the idea of what the commonality I was trying to explain to my daughter's team, I'm going to call her Lucy when I talk about her, I always call her Lucy.

And one of the things she she really relates to older women and I think it's because Lucy doesn't use words mainly, but she grew up with her maternal grandma. She's she only have a new living in the same house as her.
And I think that so often if we're in a supermarket and there's an older an obviously older woman, and I mean like someone in their 80s, she'll go straight up to them and get really close and say 'hello'. And I would just go, 'oh, hi, this is Lucy. I think you remind her of her grandma and she really, she loved her grandma.'
And 99 times out of 100, the older woman will go. 'Oh, how lovely, brilliant.' And then we'll have a bit chat. Then I'll gauge it, and I'll go. 'Have you got time for a cuppa?' And again, 99 times out of 100, they'll go. Yeah. Cool. Let's go to the cafe and have a cuppa. And you just get this beautiful moment. And when I've tried to explain this to Lucy's team, there's a bit of a moment where they just - you can see them thinking 'I couldn't possibly do that because it's that's that's all just too odd.' It's all too - but she's an er woman and I'm here supporting paid support and Lucy does some odd stuff, you know, big whole body stems and all that kind of stuff. And it just - the whole thing messes with people's heads. Whereas I'm just going 'look for that lovely commonality and embrace it and enjoy it' and have that moment of human connection and and what a gift and and Lucy will sit and have 20 minutes of drinking or having a drink doing lovely stems and enjoying this company of this older woman who's probably enjoying her company because she might not. I don't know. I'm making you know, assumptions. Maybe it doesn't speak to other people. Da da, da, da, da. But it's that lovely commonality and we don't we lose that, don't we? Once you're in the system - you do your job, you're that person. You're that person. You're that person. You're not just, you're not a human first.

Nic Crosby, Host
We're, starting to do some training around 'See the person' and it's all about tackling people's baggage. What is the baggage that you carry into a room?
So the baggage that we, you know that stops us seeing the person. It might be the the service land that we work in, but we also bring our own stuff on our own preconceptions, our own bias and our own prejudice because of the world that we've grown up in.
And it's trying to just give people a handle on actually step outside, step away from that. You can't change that. We're not going to change it in two days of training, but step away from that because you need to find yourself. I'm talking about support workers. And it's about helping support workers understand that actually, their emphasis needs to be on seeing that person rather than all the preconceptions they carry with them about who that person is and what the reputation is, whatever.

Alexis Quinn, Guest
Yeah, I think these are vert things that people need, you know, because certainly when I was exhibiting like really high levels of distress and a lot of that behaviour quote -unquote behaviour was was was quite dangerous, you know, to myself and for other people. And I think it's, you know, it's like you say Nick, isn't it? It's about how do you.

Alexis Quinn, Guest
Hold that.
Idea of the person of what's you know what's happening but also make space for that kind of relational connection, which ultimately will ease the distress that the person's exhibiting and and to do that you have to be aware of your own bias. You have to be aware of your own baggage.

You have to be able to regulate yourself when you're feeling really fearful and you can feel your heart rate increasing and your palms starting to sweat and your breathing rate increasing, calming yourself so that you can use your nervous system to help that to help the other person. And and that really didn't happen for me, you know? And that's, I mean, that led to like four years detention.

Tricia Nicoll, Guest
No, me neither.

Alexis Quinn, Guest
So, I think it's really intangible, isn't it? It's good support like it's intangible and I think that's why people find it hard because we can't just make a list.

Nic Crosby, Host
Yeah, yeah. Well, but we try because we all have training programmes, but no, no, no. Yeah. Yeah, totally. I think there I think sometimes - it would try and make it a bit more too complicated. I know I'm talking about bias and all that kind of thing, but, the thing about small supports that I love is at the core of it is relationship and that that is the bit that gets everybody through the difficult days. The bit that means that people are there when people come out of hospital again - that means that people are standing by the door of the prison, the bit that means that they've had three or four or five days on a trot where it's been really stressful, but they are with that person every moment of the day and they're picked up by their managers and they're looked after and they, you know, they're nested and supported afterwards.

But they're there because they have a meaningful relationship with the person they're supporting and and that's the bit to me that makes small support shine. But I only encounter of so many other places where they don't have that relationship. It's about the hours I work or the you know, this is what I do because I'm doing a good job by less, 'less able people' or something like that. It's. I don't know whether that's right or wrong, but I I've heard you talk a lot about relational support, Alexis and I've the naive part of me. It's kind of going. I think that's the same thing that I'm talking about.
I'm valuing.

Tricia Nicoll, Guest
Yeah.

Alexis Quinn, Guest
No, absolutely. And and I think if we could just get that bit right, so much of the other stuff will will fall into place. It's that it's that simple really.

Tricia Nicoll, Guest
Yeah, I I think the bit that you you've really nailed that. I I don't think that people get is that is that idea of and this might sound a bit 'Woo Hoo' because I talk about energy. So it's that that - if I'm when I'm I'm the same as you. You know, when I was detained it was because I was mainly doing stuff that would hurt myself, it was less often I would hurt other people, but certainly the same for me as Lucy. But what I needed around me was people who were giving off and I call it energy. It's not necessary the word that will relate to people, but that energy of 'I'm here. I've got this, I've got this. You might not have. You haven't got it.
But I have. I'm here.' There's nothing you can do that's going to cause me to lose. You know you're OK. And there's something about that. Then it's not my responsibility to to try and change how I am because that will eventually settle, won't it?

If I'm around people who know who've got me, and are kind of like metaphorically, not physically holding me and just are there and and have that calmness. And you, you kind of can't teach that people just need to be so aware of their own anxiety. And I've had again. I've had this conversation with with workers and even with Pas when I was employing PAs who go, 'but I make sure I look calm.' Yeah. And I know looking calm is not the same as being calm. Being calm is on the inside. It's an energy. I had a lovely example with with Katie. One of my Pas really discovered this for herself with Lucy, she said Lucy was really hurting herself and it was really difficult and 'I could feel myself getting stressed and I just took a moment and I just really focused on my own breathing and I got back into my body and out of my head' and it was just. And then I looked at Lucy.
I could see that she was getting calm. And I think we concentrate and support on the skills that you need to learn rather than the being you need to be.

Nic Crosby, Host
Yeah.
Yes, yeah, yeah, totally. The human being. Boom, boom. Yeah. Yes. Yeah, yeah, yeah. Absolutely.

Tricia Nicoll, Guest
The human being, we're human beings. We're not human doings.
Yeah.

Nic Crosby, Host
No, I think that it's where I've encountered support - I think it's to to bring that into people's lives. I think that's where suddenly the stuff we've done through the small supports where we try and, you know, advocate recruiting about interests, advocate about shared passions. That might sound a bit daft, but actually it's not because it's setting the stall out from the beginning that we're building relationships here, which aren't based on being a care worker. You know, I think of the guy who's been interviewed a couple of times on C- Change Facebook, and he used to work in the docks on the River Clyde, and he's been a support worker for now, 16 years. I think he's been alongside one person for that long and occasionally with other people, and his life turned around, but he wasn't recruited because he was a care worker. He was recruited because he shared interests with the guy that he's still supporting, and he's still supporting that person because they have a relationship - that goes way beyond being a 'care worker' and a 'care recipient.'
You know, and and that person's had difficult times. So, it's that kind of difference that you're looking to build or foster or create the conditions that that can happen. I'm using all the jargon words aren't I but...

Alexis Quinn, Guest
No. But you know what, Nic - I think so often that's squashed out of people and that's why the kind of attitude and ethos and mission of small supports is so important because it's it's almost centering that, isn't it? So often it's like, 'oh, you're getting too close at some boundaries.'

Tricia Nicoll, Guest
Yeah.

Alexis Quinn, Guest
And actually we need to look, we need to not just like the person we're supporting. We need to have a real love and a passion for them and a real belief in them. Especially if you're going to spend 16 years with them. So, I think that that's a credit really to small supports.

Tricia Nicoll, Guest
Yeah.
Yeah, yeah.
Yeah.

Nic Crosby, Host
Yeah, yeah.

Tricia Nicoll, Guest
Definitely. Definitely. Yeah. There's something for me as well. So I think we've got that human layer. There's a couple of things for me about what great support looks like and I guess the first one for me is about which I've got really interested in. You know, I talk about mundane and heart sing and what I've got really interested in is that mundane aspects of our life, you know, the day-to-day stuff that gives us the rhythm, you know, the doing, the washing up, hoovering, making a bed, all that kind of stuff and and how in the world of care, and I use that word intentionally, that's the workers job and it's kind of like becomes like you're then staying in a really bad hotel. And it's the idea of of even when I can't fully do it myself, if my head's not in a place, there's something about that expectation that - this is your home. Therefore, you're responsible with my support for that organising, thinking about how that rhythm and routine of when the hoovering gets done, when the bed gets changed, whether you leave a pile of dishes in the sink overnight or not, gets done and think again. It's one of the stuff that we for me again, I think it's just so, so critical. If we don't do any of that stuff ourselves, if we don't pick up our clothes and out them in the washing machine, does our washing and presents us with food. You don't get that sense of belonging and 'it's my place'. And it is one of the things I found most difficult about being detained - was that all of that thinking got taken away from you.

You know how you don't have to do anything apart from the people, give you pills when they give you pills, they give you meals when they give you meals. Everything that you do use to anchor your day is gone in hospital, isn't it, Alexis? It's just gone completely.
And and that I found that really discombobulating.

Alexis Quinn. Guest
I think it's such a complementary relationship, isn't it? Like your needs are just literally dwindled down to, like, feeding, toileting and medication like it's a very biological understanding of what of what's needed.

Tricia Nicoll, Guest
Yeah, yeah. Keep them clean. Yeah.
Feed them, clean them, drug them. Yeah, yeah.

Alexis Quinn, Guest
Yeah, yeah. So not that Nic 'cause. I know we're nearly at time. Not not that. Don't. Let's not finish on that.

Nic Crosby, Host
No, no, no, not that.
No, no, I, well, I don't know a fun question. It's like both of you have have, you know, looked out for support workers in the past. I know that Trisha, you kind of frequently are looking for new support team members.

And that, you know jokingly is, you know what you look for is it is it kind of the colour of the hair, what earrings they're wearing, the size of their boots. You know what? What? What? What? What? What is it that gives you the feeling of like hello.

Because I know that you know, my partner's son has all sorts of different people supporting him brilliantly. And it's not about the colour of the hair. But so that's just a daft example, but I'm just wondering what it is that kind of tweaks or kind of little light bulb, yeah. Or is it something they say, you know, they more than likely there's no answer to this, but I'm just kind of wondering because we'll have a list, a line of people are lined up outside your next interview, Trisha with pink hair, you know? Yeah. So.

Tricia Nicoll, Guest
Oh, it's. I'm going to go back to the energy word. I I I think I don't realise. I think I'm quite good at picking up people's energy. I I love people. If they say things like I saw that Lucy's autistic. What is that?
I go. Yeah, I I that idea of. So somebody who I always say I look for people who've never been near our world before. So, a healthy lack of understanding of the world of health and social care. Twice I've had telephone conversations with people who've been interested. You go. Oh, yeah.

I've worked with autistic people for 30 years. I know all about autistic people. I go, oh, I'm really sorry. The Post's full - because generally speaking, they're telling me they think they know my kids and I'm like, no, you don't. You know, so I kind of I like the idea and I like curiosity. I really like people who are curious. So they go

And who aren't afraid to ask lots of questions about to to the kids or to me about what's you know, how does this work? What about that? What about that? Yeah, I think it's it's. Yeah. So it's an energy. There's a curiosity.
There's a a lack of interest in in in the transactional stuff, you know how many times does she you know, what time does she go to bed? You know that don't want that stuff. You know, the the transactional stuff we were talking about the feeding, the washing, the there. If people are like.

What kind of if? The first question is to Lucy, what kind of music do you like? Yeah, with them. You know, if they get that, what are you listening to? Because she'll and very be listening to some music or or just or even better - no words. Just start looking at what she's looking at.
Yeah.

Nic Crosby, Host
That's cool.
I might, I think one of the things have been learning more and more about is, is cultural humility. So, the word humility is another one that stands out to me, something about where people are prepared to get things wrong and where they don't come across as feeling that the expert on autism, having worked with people for the last 30 years. But there's something about isn't there about and it's kind of linked to being curious because you're kind of saying, I don't know the answers, but there is definitely something about humility in there.
I'm not sure.
Alexis any any any thoughts for yourself?

Alexis Quinn, Guest
Well, all of that, all of that, and I just think people's capacity and their kind of willingness to to really like and to love the person. I think so often all the way throughout our lives, we're excluded, victimised, bullied. You know, we don't have that sense of belonging. So somebody that's really willing to to like me or like my children or like the people that that they're going to support and and even sort of learn to therapeutically love them.

Tricia Nicoll, Guest
Yeah.

Nic Crosby, Host
Yeah, I was going to say that was the word almost that you were alluding to, isn't it, that the love word?

Tricia Nicoll, Guest
Well, so here's the thing. So I think here's a big, big thing. I think we've. So here's a massive thing for me at the moment is we are so scared of using the word love. When did love become such a terrifying word in the world of social care? And yet it's one of, isn't it? One of the most important words that we use as humans, and yet we're terrified of using it. If any form of paid support is involved, because it must mean terribly bad things suddenly. So I just think it's I often ask the question of people. What words would you like to hear more of in social care and the words that people come up with?
Are love, or when I did this in the Northeast recently, 'getting mortal', it's just great. But just that idea of love. You know what I think? I love. I think we should be talking more about love. I want people to to love being around me. I want people to love my kids.

Nic Crosby, Host
Yeah.

Tricia Nicoll, Guest
100%.

Nic Crosby. Guest
Yeah, they, they. Well, it's simple. What makes good for what makes for good support? Love. Yeah, we, you know, and thereby hangs another two hour podcast. But I think you're right because it's what makes it's the petrol that makes us function as human beings, isn't it? Yeah.

Tricia Nicoll, Guest
Yeah.
And again, I think and then what the other thing I'd say is that for me would segue onto another thing, which is there's another thing that I think is really, really important is that is expectation. So I think that often I've noticed that people expect very little of me. So, when I was, yeah. When I've been in times when I've when things have not been great for me people haven't expected anything of me and I see that about the expectations about my kids as well. So the idea of - I can remember someone saying when Lucy was younger. So she'll have a job I was like of course she'll have a job.

You know? Oh, and that expect no expectation for work, no expectation for having your own place, no expectation for friends or relationships. So, there's something for me about. I talk about, you know, Empire State Building high expectations of what's possible - I think is is really important for me and that includes huge expectation around purpose. Because you know how we're really good at filling people's weeks with stuff, you know, like be busy. So we're good at making people busy.
But we're really poor in terms of supporting people at thinking about those, those contributory things that we all do, that we need to do as human beings that make us feel good being needed.

Nic Crosby, Host
Yeah, yeah.

Tricia Nicoll, Guest
I think that's that's a huge thing for me. That expectation that that I've got something to offer.
Even at my, even at my toughest point in life, you know those lowest days, Alexis, you know the days when they're just.
You know, I always quote math. Wonderful math pots. We'll put the camarados website link in as well. Let's give a shout out to math, but that idea of of of when we're struggling, somebody asking us for help is such an important thing. So, it gets you out of that, that dark place that that. "Oh, actually, I can help you. Oh, yeah, I could do that."
And I don't think - we're so poor about that. We're so poor at expecting, expecting contribution, expecting purpose, seeing that someone's got something to offer words or no words, legs working or no legs working, you know, whatever bits and whatever bits she works differently, still got something to offer.

Nic Crosby. Host
Yeah, yeah, yeah, yeah.
Yeah. Mark, I'm, I'm smiling. But I've leave it to my partner coming and joining this conversation about that one. But yeah, that's really important. I just say a massive thank you to you both. Yeah. I joke about we could keep talking - I think it's really.

To me, we could keep on talking because I think it's a it's a continual challenges to be really getting clear about what good support is and just as important, what it's not when I think we encounter what it's not too much - left, right and centre. So thank you so much for kicking us off. Yeah, links to lots of interesting bits of information and your website, web pages and anybody who wants to find out more contact any one of us.
And we can link you up, but just a massive thank you for your time today and look forward to the next part of the conversation sometime soon.

Tricia Nicoll, Guest
Better pleasure. Thank you.

Alexis Quinn, Guest
Thank you. Yeah. Thank you, nic.