A lived experience perspective on adult social care practice: Audio Learning Resource

Clenton: How do we use community? How do we get community involved in co-production? And it isn't just about community groups having their voice heard, it's about community being central in shaping services. How do we use local partnerships that are in the community to help shape policy, design of a service? 

So it's things like, what do you know of the organisations in your locality? How do you get to know about those services and how do you bring in... sometimes people use the phrase usual suspects.’ And I think it's not... we need to reframe that language, that's not very useful. We should be using the phrase ‘central voices.’ How do you get the central voices, but also the most marginalised voices into those dialogues that are talked about? And it's about... how do you create? What mechanisms have you got to get those diverse voices into your discussions, dialogue, or whatever.  

If you're doing an activity and you're trying to redesign or co-produce or even deliver a service alongside people who use services, co-production is a vehicle to do it.  

One of the biggest things that was a massive wake up call for me was how risk was used and the language of vulnerability, and it wasn't necessarily used in looking at the context that I was living in, or the situation that I might find myself in. Risk and vulnerability was used as a blanket term for the label that I had. So, as a disabled person who uses mental health services and has long term conditions. The checklist in people's minds started to go off risk. ‘Risk! Risk!’  

Because, you know, I'll call it risk bingo. Certain words make individuals and organisations go ‘Oh my god! Oh my God’ - quite frightened. You know, and it's about how we can have those, discussions around vulnerability. And vulnerability is not necessarily a weakness. But it's how you enable discussion through... what do we mean by... another jargon word, about ‘risk enablement’ or ‘risk averse.’ And it's about having those conversations. Because to me, risk averse or risk enablement is about how you use the knowledge and skills that you have, to use the risk intelligence that enables someone to do an activity, not use it to stop them. 

Clenton: When I talk about equality, diversity, and inclusion, I talk about this... basically is about our aspirations, wishes, and dreams. And if you think about all of those three words that I've just talked, they are associated with emotion. They are lived experience that we all have. And can affect how we perceive if we feel included. 

And inclusion isn't a place. Inclusion is how you... it's a sense of belonging, which is attached to emotion. So for me, how do you understand equality, diverse and inclusion? Because it's at the moment framed just around opportunities to people or social mobility. 

And it's more than that. It is part of it, but we live complex lives, and you need to understand how then complexity and how intersectionality works. And what I mean by intersectionality, I have multiple identities. I have an identity of mental health. I have an identity of being a disabled person. I have an identity of race and ethnicity. I have long-term conditions. They are multiple identities, but we're often when we come into service driven organisations like the NHS or social care, we’re often then packed into ‘Oh, you need to see mental health services.’  

‘You need to see physical services.’  

‘You need to see older people services.’  

‘You need to see learning disability services.’  

Which I class as binary thinking. Now if binary thinking... you are stuck in your thinking. How do you deal with complexity of life?  

Claire: Yeah. And being viewed as a whole person with lots of different aspects about your personality and character and needs. 

Clenton: And what we've done is, especially with care and support plans, we're often focused on task. Task orientation, task driven, but really struggle around how do we balance tasks with relationships, with a sense of belonging, sense of purpose, sense of worth. Those are all the things that social care, and adult social care, and the practitioners are really good and they're all based in, and fundamental to social justice. Because we all carry unconscious bias, all of us. And one of the things that I always say is, one of the biggest tools that the social care workforce uses is reflection. 

So as a tool for how do we use reflection to look at our own understanding of the values that we bring in to a conversation at the individual level? And what I mean by that, how we might have grown up - can have a view of the world that might not be the same view of the world as me. If we look at each of us, we will have a different view of the world. 

But how do you put your view of the world to one side? Because you could be hearing experiences that doesn't compute with your worldview and thinking ‘No, they're making this up. I can't believe this.’ But it could be that it's their truth. So how do you align with holding in your head that there can be multiple truths? 

Claire: Yeah.  

Clenton: That's quite hard for us as human beings to... 

Claire:  It is. 

Clenton: ... to deal with special efforts outside of your worldview, but it'll have issues how you perceive sexism, racism, disablism, ageism, LGBT [Lesbian, Gay, Bisexual and Transgender]. All of this will have impact on our thoughts, feelings, and behaviours. 

Clenton: Sometimes, care and support can seem like a static conversation. But for me, care and support is a dynamic issue that touches on everyone's lives at some point, and potentially at multiple stages through our lives. Whether it concerns our children, our grandparents, our parents. Or our partners, or even our colleagues at work, or the people we manage at work and our neighbours and ourselves. And we sometimes think care and support is only framed in personal care. 

And it's about, how do we move it from that personal care element of washing, you know, eating? They are basic functions of survival. I use an analogy called the houseplant. And what I mean by the houseplant analogy is, think about, we water to give nourishment. If you're lucky, you feed it with food - that helps the plant to grow. And if you are very lucky, someone might put you in on the window ledge for some sunlight. And if you're very lucky, someone might even talk to you as a plant. But that to me is just surviving, not thriving. 

Clenton: One of the things that we're doing in Birmingham that saw the potential that people who use services, and user-led organisations could be part of training and deliver training. And then she got involved and invited our user led organisation called Community Navigator Services to co-produce some training to look at what we meant by direct payments, personal budgets, to give confidence to practitioners to have a conversation with people who use services. And we came up with the pursuit of confidence.  

And pursuit to confidence mainly is all the elements that people get tied up in knots – it's about process, about making sure the right things are in the right place, but we forget a lot about the relationship of giving information at the right time, right place in small, chunkable sizes that enable the individual to go away and do the thing.  

So in the pursuit of confidence, we co-designed two phases. We co-designed the process of personal budgets and direct payments. So it was, it's just what you can do, what you can't do with direct payments and personal budgets, and created e-learning for practitioners to come on to... go on a first stage before they came to the pursuit of confidence. And then me and a colleague deliver this pursuit of confidence about talking around how you use your judgment, how you use your knowledge, and skills - because that's why you’re in the jobs you are in as practitioners. You've got the skills, you've got the judgment. But how do we create the conditions for that to come to the forefront? What does the organisation need to do to get the best out of the practitioner?  

So we've had discussions around sharing stories from different people who use services. We were trying to dispel myths like ‘Oh, direct payments are only good for physical disabled people. It's not good for older people. It's not good for people with mental health’ or... so we said, so where have those stories come from? And then what we did was create the voice - we call it the voice of people who use services from those different characteristics. And got them to tell their story. So they can hear the different stories about how direct payments and using them has changed their lives, so you're getting first hand stories of some of the blocks. 

Clenton:  The three Cs are capabilities, co-production and cost benefits. And what I mean by that is if we look at capabilities as the first one, it's to promote the capabilities and autonomy of each individual, regardless of means. So, how do we enable people to use their agency for choice and control? And what does that mean to the practitioner to deliver that? 

Number two is what I call co-production. And how do you encourage co-production and partnership, working to create a sustainable infrastructure for care and support? What does that look like from one, the practitioner level? Two, the organisational level.  

And then the third one is the cost benefit - identifying the cost benefits to one, the organisation for why we're working in this way, and two to the individual and society. And what I mean by cost, most people focus on the price of things, but not the cost. And I use cost as the cost to the emotional wellbeing. Because that's a cost to the human being. 

Clenton:  When we talk a lot about power, power normally it's the elephant in the room. Not a lot of people like to talk about power. But as practitioners, you need to understand that we all carry some sort of power. And while you work for an organisation, in this case in adult social care, you carry power. Because there will be a power difference in the relationship and your conversation with people.  

You can have power over people. So you direct how people or what you think people might need, not want, need. And the person might not agree with what you are saying. So how do you look at the power and influence that you might be carrying? And some people might call that privilege.  

Now, power with is when you're at an equal level of this dialogue - that you are combining and collaborating and to try and find and accommodate those different multiple truths through their dialogue.