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So Who Cares Anyway - E39 From Knowing, To Understanding, To Acting · SoWhoCaresAnyway

• 0:04
  Welcome to So Who Cares.
• 0:06
  Anyway, a fortnightly podcast exploring stories that shape care community and the systems we live in.
• 0:12
  I'm Ruth Germaine, and in each episode I'm joined by my guests, people from behind clinical doors to the North York malls, whose experiences open a window into how we care for one another.
• 0:24
  Together, we explore care through creativity, connection, and the strengths we already hold.
• 0:30
  Because care isn't small.
• 0:32
  Care isn't soft care shapes the world, so who cares? Anyway, it's time to talk about it.
• 0:42
  Hello and welcome back to So Who Cares.
• 0:44
  Anyway, and today I'm not going to be introducing a guest.
• 0:47
  Instead I'm gonna be introducing some of the work that I've been doing over the last, um, 10 months.
• 0:54
  So this particular work is my knowledge mobilization work.
• 0:58
  That sounds fancy.
• 0:58
  I'll go into it in a minute.
• 1:00
  Um, and it's funded through the National Institute of Health Research.
• 1:03
  And again, this isn't research as such.
• 1:05
  This is about knowledge and how we use that.
• 1:10
  Place, and there's three key learning points that I want to cover.
• 1:14
  The first is not just what staff need to know, but what staff need to feel and understand how trust is shaped by history.
• 1:23
  And actually we need to.
• 1:24
  Rebuild trust with intention.
• 1:27
  And now inclusion has to be react.
• 1:29
  Act has to be active, it needs to be relational and genuine and mustn't be tokenistic.
• 1:35
  I just unpack each one briefly and then I'm gonna go into some, the key learning points, um, that I took away from that, or if you like Golden threads and share a few of those with you.
• 1:46
  But first of all.
• 1:47
  Knowledge mobilization.
• 1:49
  I have done a previous episode with Sue, uh, Lacey Bryant about knowledge mobilization.
• 1:54
  So if you want to hear more about it and it's a fascinating listen to be fair, um, or at least I found it fascinating talking to Sue.
• 2:01
  Um.
• 2:02
  Then you can listen to that.
• 2:04
  But really it's about making knowledge that we have out there usable and actually getting it to change practice.
• 2:10
  So often knowledge is in research, it's in policy, it's in people's heads, and I always think it's actually often in people's hearts as well, but we don't use it.
• 2:18
  'cause the way systems are set up, they're set up, they repeat the same old patterns of what we already know.
• 2:24
  So that's not because of us as individuals, um, not being creative and all those things I talk about, but just because that's the system and the world or the country, as I'm talking about here that we live in, knowledge mobilization is really about linking people, co-creation, co-production, building relationships, and moving, learning across boundaries.
• 2:48
  So this isn't about me being an expert.
• 2:50
  This is about me.
• 2:52
  Thinking about how do I get this knowledge into practice? So the particular knowledge that I was looking at was around how do we develop our workforce to meet people's needs? And in this case it was people.
• 3:08
  The needs of people.
• 3:08
  We learn disabilities and autistic people.
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  There's already some background work around that, which was undertaken by, um, Carolyn Jackson and Kim Mandy, and there were a couple of other co-authors in that work as well.
• 3:22
  But what they looked at was individual learning.
• 3:24
  Individuals need to know the things that they need to do their job every day.
• 3:29
  We often think we know that, but sometimes we don't quite to understand what that is that we need to know.
• 3:35
  We need to make sure that we learn across teams.
• 3:38
  So it's individual learning, team learning.
• 3:40
  And in doing that we understand our teams better and we understand who to work with.
• 3:46
  And when I'm talking about teams, I'm talking about the widest sense.
• 3:49
  So in a way, it's not so much the team that people work in, but it's thinking about the wider community around the person that we care for.
• 3:55
  And thinking about them as a team, whether that's.
• 3:57
  Be their family, friends and carers, whether that be another organization, social workers, hospital community, um, just other people that are out there, schools, the police, whoever it is that those people are interacting with.
• 4:14
  There needs to be a culture of learning.
• 4:16
  People need to be able to say, I don't know that.
• 4:18
  I'm not quite sure.
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  I don't understand.
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  I haven't done that before.
• 4:22
  And so often we don't feel able to do that.
• 4:24
  And even more importantly, people need to say, I think I got it wrong.
• 4:28
  I gave it a try.
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  It didn't work.
• 4:30
  And people need to be allowed to make.
• 4:32
  To try and things not to work and actually go, okay, so that didn't work.
• 4:35
  Let's try something else.
• 4:37
  So there needs to be a culture of learning, but we also need to think about knowledge, and this is almost knowledge mobilization itself, and think about where do we get our knowledge from? How do we make sure that that knowledge is embedded in practice? And in what we do every day and how do we make sure that knowledge is making a difference to the people that we care for.
• 4:57
  So we need to learn with and from the people we care for as well as learn from the research and all of those policies and other things I spoke about earlier on.
• 5:07
  So I held four workshops to find out a bit more.
• 5:10
  I wanted to know from people.
• 5:13
  What's, what do people need to know, uh, in order to meet the needs of people with learning disabilities and autistic people? What do they need to feel and what do they need to understand? I wanted to know how would could we make that happen and keep it going? And I wanted to know what difference, what would be the impact that that would have.
• 5:35
  And I'm not gonna explore all of those.
• 5:36
  I'm just gonna go into those three points that I mentioned earlier on.
• 5:41
  I had nearly 30 people come to four workshops.
• 5:44
  Each workshop was essentially the same, although some are online and some with face-to-face.
• 5:49
  And those people were a mixture of people.
• 5:52
  So there was autistic people, people with learning disabilities, families, friends, carers, staff.
• 5:57
  Some of those staff also had, um, were also autistic people or had a learning disability.
• 6:03
  There was voluntary sector health and social care hospital.
• 6:08
  Um, general practice, all sorts of people came along the universities, quite a list of people to be fair.
• 6:14
  So there was a real diverse mixture of people in the room with different experiences, but actually a shared purpose.
• 6:22
  And the aim was to understand what does good support look like from multiple perspectives.
• 6:29
  So the first point learning 0.1,
• 6:32
  it's not just what staff know, it's what they need to feel.
• 6:37
  I'm gonna come to that feeling first because constantly people were saying people need to feel confident, they need to feel safe, they need to be able to say, I dunno.
• 6:47
  And that was exactly the same as what I'd heard in that research I spoke about earlier on.
• 6:54
  But to get that, how do we do that? And what came through in those workshops is that if people sit and listen.
• 7:01
  Deeply.
• 7:02
  Then actually they develop that understanding and in developing that understanding then we build empathy.
• 7:12
  We haven't all gone through every single different experience, and that's why telling stories our stories are important.
• 7:20
  And that's why listening to other people's stories are important.
• 7:24
  Because when we sit and listen to those stories with intention, suddenly we understand what it is that people are going through and why it matters.
• 7:32
  And then we can start to feel that empathy.
• 7:36
  And with empathy, we have a deeper understanding.
• 7:40
  So that feeling and understanding.
• 7:42
  Really brings us back to the knowledge.
• 7:45
  So I found that so interesting that knowing, feeling, and understanding were really linking together and made a difference.
• 7:54
  Um, and people felt that, that taking that time to feel and understand created the type of culture that we need.
• 8:02
  The next one was about trust as beam.
• 8:05
  Eroded and we need to rebuild it with intention.
• 8:09
  So, so many people had stories of being dismissed, being misunderstood of injustice, and we know that there's reports like the Leader report that shows that people's needs are unmet.
• 8:20
  There's poorer health, and people live poorer with poorer health and shorter lives.
• 8:25
  So that we are talking about communities worth it where people just aren't getting everything they need and it's unfair.
• 8:32
  And in just, and even when staff do care, which to be honest, most of the time, and as in every scenario I've met, staff do care.
• 8:42
  That's what we go to work for.
• 8:43
  Systems just don't allow for us to follow through and really do everything that we need.
• 8:48
  I've spoken before about how I was told that my role was to get people in and get them out and actually.
• 8:54
  That just doesn't give the care that we need.
• 8:57
  So we need to stop and think and trust grow grows through consistency, honesty, relationships, and not one-off relat, uh, just one-off interactions.
• 9:08
  And the only way to build trust is to sit for people to be able to see that we've listened, to see that we've really made sure that we understood, but most importantly, that we've acted on what they have said rather than just going with our own agenda.
• 9:23
  There's some great work happening locally.
• 9:25
  I'm not gonna pretend there's not.
• 9:26
  There's absolutely great work, but there's still room for us to really stop and think about how do we link all of this work together, and how do we continue to show people that not only are we listening, but that we're acting on what they said because we took time to understand them.
• 9:44
  This podcast is all about collective voices.
• 9:46
  So if you're enjoying it, please subscribe and share it across your networks, your friends, your family, your colleagues.
• 9:53
  This way we can amplify the voice, share the stories further, and it will help to keep the podcast going.
• 9:59
  Now back to the conversation.
• 10:03
  Learning 0.3,
• 10:05
  inclusion must be active, relational, and genuine.
• 10:09
  And I think I've probably already gone over some of this, but co-production only works when people see their input shaping decisions.
• 10:16
  So we sat and understand it.
• 10:19
  We ask who's missing? Is there anybody else who should be here? And if there's not, we go out and find them.
• 10:30
  People are saying, I, people have said to me, I went along and I was asked, people made their own interpret interpretation of what I said and done something different or worse still.
• 10:41
  People made their, didn't even interpret it.
• 10:45
  They took the information, said that's great, but actually they had their own agenda from the start and that's what they went off and done their own agenda and what was the point of asking me what it was about? And this ran through from every level, not just, um, in co-creation and co-production.
• 11:02
  In other words, working with people to develop something new.
• 11:05
  But even when people are talking about just their individual things that they were trying to do to be able to live healthy and well.
• 11:12
  So there were some golden threads.
• 11:13
  There were 10 in all, and I'm not gonna share them all, and some of them are a little bit repetitive.
• 11:19
  The first one I will give you is a bit repetitive, but we must listen deeply.
• 11:24
  We must hear.
• 11:25
  Just make sure we understand.
• 11:28
  We must believe and give credibility to what people say.
• 11:32
  So often we're like, oh, okay, well maybe it's just in that situation or just like this.
• 11:36
  And I know that myself.
• 11:37
  I've sometimes tried to interpret, no, we have to believe and say that people.
• 11:42
  People's views and their insights are credible and valued before acting, the middle group often gets missed.
• 11:52
  Now, I've not heard this before, but it came up the term middle group on a couple of the workshops, so it must be something that people talk about.
• 11:58
  And we are talking about people who mask or people that muddle through people that are getting on, okay, there doesn't seem to be any real problems, any issues.
• 12:05
  And perhaps they've not had a diagnosis yet or maybe they haven't shared that diagnosis or maybe they don't even know that you don't know.
• 12:12
  'cause they assume people, we always assume, don't we, that if our.
• 12:16
  Doctor knows, or our general practice know about it.
• 12:18
  Then when we go to the hospital, they know, or when we go to the social worker, they know, but we have to just turn around and say to people, is there anything else that I need to know about you that might help me to support you? 'cause we don't always know, so make sure that we don't miss that middle group because they're just as important.
• 12:37
  And past harm shapes, present engagement.
• 12:41
  And I spoke about this just now.
• 12:42
  I know, but I think it's a really important insight.
• 12:46
  Harms that have happened not through any one person's thought individually, but.
• 12:52
  People do feel when I listen to them that they've been discredited, that they've not been listened to, that they've had to battle to get what they need.
• 13:00
  Um, they've had crisis and things haven't happened.
• 13:04
  The people that have been to see haven't had the time or the resources to be able to do it or the.
• 13:10
  The knowhow always to do the things that they really needed that would make a difference.
• 13:16
  But actually we need to recognize that.
• 13:19
  We need to recognize the social injustices that happened that have happened, and acknowledge them.
• 13:26
  We don't need to proportion blame.
• 13:28
  I'm not a believer in proportioning blame, but we do need to recognize what's gone on.
• 13:34
  So what next? Well, I worked with the focus group and I said to them about what happened, what had come out.
• 13:39
  And one of the big thing is we need to co-produce learning, which I haven't spoken about so much, but learning needs to happen with and from.
• 13:46
  The people that it, that it's about.
• 13:48
  So we need to start getting people involved.
• 13:51
  And what they came back was, yeah, we're, if we know, we know that we're doing a lot of that.
• 13:54
  'cause I, I was talking to people that are from organizations and people that are doing amazing things, but it's just so hard to get people involved and keep them involved.
• 14:03
  So that's my next step.
• 14:05
  I'm gonna have run in two workshops.
• 14:07
  I know I could do more, but this is a limited time cohesive work.
• 14:10
  I'm doing two workshops with.
• 14:13
  Um, autistic people in learning disabilities, um, to really explore how can we involve them in a way that they feel safe, in a way that is meaningful.
• 14:23
  And then I'm going on to run a pilot on workplace learning with and from people with lived experience.
• 14:27
  I'm already starting to think about what this is.
• 14:30
  This is ongoing work.
• 14:31
  It's not a finished product.
• 14:32
  And I'm sure even at the end of the, um.
• 14:36
  Knowledge mobilization fellowship, it still won't be a finished product, but what I'm hoping is that at least I've got a snowball rolling, if you like, and something continues to roll over, uh, roll on even past the end of my work.
• 14:51
  So just a few thoughts to take away.
• 14:56
  I always say keep caring, keep noticing, keep listening, and be creative.
• 15:03
  Creativity opens possibilities, so.
• 15:08
  Keep thinking and listening to stories.
• 15:14
  The real work so often starts by noticing who's missing, who aren't we talking to? Who hasn't got a voice? Who hasn't got agency? Where are they and how do we get those voices to be a part of whatever we're doing? And finally be kind.
• 15:33
  Most importantly, be kind to yourself.
• 15:36
  It's something that I've learned and I think it's really important.
• 15:39
  Be kind to yourself and then once you're kind to yourself, it's so much easier to be kind to others.
• 15:45
  Treat yourself with the same kindness that you would treat others with.
• 15:49
  So thank you for listening.
• 15:52
  A bit of a shorter and different podcast this week.
• 15:56
  I hope there was something that you can take away.
• 15:58
  And until next time, bye.
• 16:02
  I hope today's conversation gave you something to think about.
• 16:06
  If it did, please share it with someone.
• 16:08
  Ripples matter.
• 16:09
  You can also follow the show so you don't miss future episodes, and if you have reflections or ideas.
• 16:15
  Please leave a rating or to support my work.
• 16:18
  Head over to my link tree, which you can find in the show notes.
• 16:22
  But for now, stay caring, stay connected, stay curious.
• 16:26
  Thanks for listening.