In this dialogue, mental health consultant Tricia Nicol and practice lead at Innovation Unit Stacey Hemphill - who were both at the heart of developing Lambeth’s pioneering Living Well approach - explore the tension of what story is understood as being of more validity and importance in our systems: that of the subjective individual person’s experience, opposed to more neutral, perhaps objective, measures and assessments.
'People's stories and experiences help us understand how we learn the impact we are having and how to do better'
‘Neutral measures and assessments help us understand how we learn the impact we are having and how to do better'
Tricia: I did an intro round yesterday in a group I was with where I just asked them to say something was important to them, a really basic one. And the very first woman said the most important thing in my life is my snake. I’ve got this most beautiful snake and it gives the best cuddles and it wraps round my neck … and the whole room is going [sharp intake of breath from others].
Jo [Narrator]: Welcome to the Living Well Dialogues a series of podcasts of intimate conversations between people striving to understand how our mental health system is shaped and seeking to find new possibilities to continue to grow their Living Well Systems in places across the UK.
What story matters most? This is the question that Tricia Nicoll and Stacey Hemphill explore to uncover the tensions in two kinds of stories. Firstly, there are those stories that we can try to assess through standardised measures that can be applied to everyone and there are those kinds of stories that people share about themselves and their own lived experience.
Stacey’s background is as an Occupational Therapist specialising in mental health. She has worked in a practitioner in a variety of different settings. In her role as Programme Manager, she was at the heart of developing the Lambeth Living Well approach that inspired our National Living Well Programme. Today Stacey is the Practice Lead for the Innovation Unit and has been working across the UK to develop Living Well Systems.
Tricia and Stacey know each other because like Stacey , Tricia was central in developing the Lambeth Living Well approach, working with Commissioners, practitioners, managers and people with lived experience to develop, prototype and establish the approach in Lambeth. Tricia herself has experienced mental health services and works across the UK to support people, organisations, systems and policy makers to grow new approaches that hold an inherent belief in the capacities of people.
So, what story matters most? Like all good tensions both feel important, but which is seen as a more legitimate way to truly help us to better understand people’s mental health needs, how we can support the better and the impact we might be having on their lives.
Just a warning, this episode does contain some language that we have chosen not to edit out.
Stacey: I’ve been struggling with this one. There’s part of me that is like stories are really important and you want to get to know people and you want to understand the texture of their experience and you want to be able to do bespoke and relevant work with them, however, that’s one person and when you start to try and think about a broader population of people it starts to become quite difficult for me to think about how you measure volume of impact and think about how you make sure you’re actually able to do well for more people and how you actually ensure that holding on to that accountability for doing the work of supporting people or enabling people to live their lives better again and again and again versus a snap shot of one story and that’s the bit where I’m like, but I see … the need for both things.
If you get it right for one person all year and you’re a mental health service that is not doing your job. So, if you just work with that one person intensively for that whole year and you’re amazing and they are transformed, we need to know that you are serving your population. Like I want to know that, that’s part of my internalised drive to think about provision of support. And I don’t know how you can get that from story alone. So, like how many people, from where, that kind of data feeling and then, how can we be sure ... how do we take that data in a measurable chunk that information and actually make systemic sense of it, even though … on the other end is the person - and I appreciate that is probably completely hideous for them - solve that for me Tricia Nicoll! That’s the stuff of the head-scratcher.
Tricia: I guess, do you know what my first reaction is? It’s like why are you so interested in that?
Stacey: Because of money! That’s why I’m interested in that because …
Tricia: Ahhh okay …
Stacey: I spend time ... I know it’s so dirty isn’t it .. Jeeze what’s happened to me ... but I think I spend time moving between the practice space and the leadership and strategic space, and even more recently into bigger spaces that are sitting across larger footprints. And every single time, the story is told of success with detail about what difference Living Well has made to somebody’s life. The experience they have had which contrasts with what it was like before. I know for a fact at a table somewhere in the future will be a group of people who will put that story to one side and want to look at numbers.
Tricia: Do you know, what’s made me think of this ... when you used the word ‘roll-out’ and that’s the word we’ve got to stop doing, because we think we can roll stuff out, we think it’s carpets … we treat human beings like they’re carpets … so the system wants to do is to treat unique relationships that one human being has with another as a carpet, so could you please clone that - it’s Stepford Wives for God’s sake, it’s a mixture of Stepford wives and Handmaids Tale! …
Stacey: Hey, hey, Stepford Wives are great fashion, let’s just put that out there.
Tricia: … but it’s the idea, what the system says …matching the money to the numbers to the demonstrating in ways that make sense to the system and what I think the joy of Living Well is, that you can’t ‘rollout’ - and I spend a lot of my work life telling people that you can’t roll stuff out, you have to nurture in different places.
So, you make it work here and you nurture it somewhere else … So, if you’re talking about money, let’s get real about the amount of money that is spent on shite systems, capturing data that is utterly useless for anybody. … So what I think we need to get really, really good at is this idea of … if impact is what we want to know - because that’s the right question - impact is the right question … It’s not actually about numbers … the only way I think to do that is by knowing that we are asking the right questions and being smart enough to be able to have conversations that go - “right, there’s a bunch of people we’ve spoken to who really use the word connection a lot in their conversations and they talk about relationships and trust” okay, that’s impact! But a computer programme can’t do that. … so, focus on impact and think about how we find out what impact really, really means, how we can genuinely measure that.
Jo: Okay, so understanding impact does matter and this means being smart and curious about impact from the perspective of a person receiving support to understand what is good value and what is not. But how can we put our confidence in a story of impact when it relies so heavily on the relationship between the person receiving support and those delivering it to define this impact. Are there other tensions and issues that are revealed when we think about this?
Stacey: This sounds so awful Tricia and I really hope you jump on me for it, because I don’t know where this is coming from - we’ve created systems that people invest in being unwell, and there’s benefits for being unwell and so sometimes story I think is inadequate to really appraise whether there has been improvement or whether we’re getting it right for people and that could be for so many reasons that are personal to folk but I’m not sure that either/either, stories or measures gets the full truth of the matter and that’s where I get a bit stuck.
Tricia: So that’s great, there’s a couple of things there for me straight away, which is … and it’s fascinating the concept of neutral measures - is just an oxymoron. There is no such thing as a neutral measure. It is a measure that somebody has decided somewhere is the right thing to measure and, open brackets - it’s probably not what the person wants to measure, close brackets!
So, there’s that, and then again, I think maybe it’s 2 parts of the same point: when you say ‘are stories enough to demonstrate progress’ - yes, that takes me right back to the same place - whose progress? Because if I say, ‘do you know what guys it’s cool,’ that’s my sentence, that’s my story. If my story to you was … you’ve been working with me for the last 12 weeks, you’ve done a range of interventions dah, dah, da dah, and after 12 weeks I rock up and go, “Stacey mate I’m cool”. Is that not enough?
Stacey: No, I would say no, I’ll tell you why, because I can’t teach people how to repeat that, because I don’t know what it is and I think that’s the bit where I’m like - there’s two parts in my mind. One is understanding who you are and the other one is thinking about the work that we may have done together or in some cases beside each other - let’s be honest. You know. And what things perhaps have been the difference makers. And that’s the thing I want to unpack more. And I don’t think either of those things are adequate to do that.
Tricia: So, is it about having really good questions that enable you to tease out what it is that has made that difference for that person and reflect - not using a neutral measure - because I don’t think there is such a thing …and I don’t think you do either. So I think that the idea that it is really good questions and curiosity - … why something has happened the way it has happened. ... so, you can do that teasing out from a really human point of view.
Stacey: The thing that I also find really weird about the idea of assessment is, if we think about story, we think about narrative, and we think about the fact that people come into a situation of sitting opposite a mental health professional as part of their life. It’s not the only thing that ever happened to them. It’s not like they were born the moment they walked into A&E and they die when they leave. And we never elicit that story through assessment. And that’s the rub for me, because I do not think you can make an impact unless you know that story and unless you become a part of that story for a little while. You co-author that chapter of that story and it is the expertise of both people in that relationship that actually makes the difference. That is a filthy concept in psychiatry, and I think that is directly connected to the fact that you can’t bloody measure it!
Tricia: And so, people are not interested.
Stacey: Look at IAPS, Improving Access to Psychological Therapies. So, buckle up because this is where I get myself in real trouble. Asking people to rate themselves on a Generalised Anxiety or Depression Scale … that they give people every session. I know when I talk to my clients that they would lie because they would feel so bad that the person that was helping them in those sessions … they hadn’t got better yet, and they didn’t want to let them down.
Tricia: And they felt really sorry for the person! That’s a brilliant thing you have hit on! … So if we are saying - and I know we agree - that the relationship is the heart of everything, so whatever else we care about, we know the only thing that matters in somebody seeing their life differently is the relationship with another human being, whoever that human being might be. And it might be a practitioner, or it might be their brother or the person in the corner shop …
Stacey: It’s always the person in the corner shop!
Tricia: So, it’s about relationships - then by definition if you introduce the concept of neutral assessments, then it’s not neutral by definition because we know that the human relationship condition is just so gloriously nuanced and you’re constantly thinking about is this … it’s impossible for anybody to complete a ‘neutral assessment’ because it messes with the relationship….So I can think about times when I have sat and done some of those formal assessments with people I thought were just the shit, so therefore, I don’t care, so I’m just going to mess this up! Equally I have done it when I haven’t wanted to hurt someone who is really trying their best and I really like them and they are equally a bit shit, but I still like them …
Stacey: Yeah - redeeming features!
Jo: Tricia and Stacey’s conversation appears to reveal a central tension, the concept of neutrality. So, we seem to believe that neutrality feels important to us to help truly judge whether our services are good value and having impact, for everybody, not just for some. But through their discussion they have emphasised that any level of neutrality is difficult, indeed they argue impossible, because assessing any measures of quality and impact requires and form of assessment that is likely to involve people’s relationships. This means it will always be impacted by dynamics of power and authority in the relationship, the changing nature of people’s own perceptions of themselves and the quality of the relationship to each other. But does this issue of neutrality run deeper, is it not simply a problem for measuring whether something is or isn’t true, but does this belief in neutrality also shape the ways we see people, their capacities, and more importantly what is good or right for them in their lives.
Stacey: I’ve worked with a lot of people where I’ve talked to the psychologist, and they’ve said to me “Oh! I’ve done the WESSLER, I’ve done the intelligence test, and I’ve done this other test, and I’ve done this other test and they can’t do banking?” And I say “Mate, that guy’s down the corner right now dealing pot. He knows how much money costs! Or I just went to the shops with him, and he pocketed the change because he wanted to buy a wine cask - he knows how money works. He knows how shops work. If you go up another level, can you do something or can you not; were you doing something before, we’ve done some work with you, together, and now you can, that’s kind of measurable? Right?
Tricia: 100% - yeah - completely.
Stacey: So, you could kind of count stuff like incidences of improvement and that could be quite kind-of neutral?
Tricia: You’re absolutely right, if you ask the right questions, it will give you the right answers, measurable, beautifully measurable answers. It seems to me that you can do that and you weren’t able to do it before. Or you didn’t think you could do it and now you see to think you can. That seems cool. I think that is absolutely right, and again, that’s just about good honest conversations between human beings that ask the right questions.
Stacey: And … I guess … it’s also about how we use the information we have. So, it’s about completely rethinking that and saying “When we come together and speak about this person and the work we have done together and where they are in their life right now”, these are the things we would pull out as important things that have happened or exist and then using that as the bench mark versus “they’ve got a reduction in auditory hallucinations”.
Tricia: In my experience, as someone with lived experience of mental health services and a Mum to someone who is Autistic and also on the edge in mental health services as well as learning disabilities services, I have almost zero respect for the systems questions.
Bizarre questions and bizarre things that we think to be right. What we’re looking for is a ‘right’ that belongs to the system which is often a construct that makes no sense to the person. So, it is wrong to sleep during the day and it is wrong to not keep your house tidy, it is wrong not to eat 3 meals a day, it is wrong to eat McDonalds every day - all those things - it is wrong to smoke pot. All these things we have said are wrong, so lots of our assessments are based on those sorts of things as well.
So, as part of the story telling we also have to uncover the rubbish that is social norm or social construct. I think that the joy of the values and principles of Living Well are that they have a healthy and respectful disrespect for all the other bits of the system that we talk about working in partnership with. But let’s be honest, what we are saying is that we genuinely believe that at the heart of everything we do is the human relationship, and it trumps everything.
I did an intro round yesterday in a group I was with where I just asked them to say something was important to them, a really basic one. And the very first woman said the most important thing in my life is my snake. I’ve got this most beautiful snake and it gives the best cuddles and it wraps round my neck … and the whole room is going [sharp intake of breath from others] and it was just a beautiful example of that’s her truth, not mine.
Stacey: Yeah - everyone’s got a snake!
Tricia: Yeah … everyone’s got their version of that - exactly - and who are we to say “No, you know you’re wrong … you’re wrong, you shouldn’t like snakes because that’s wrong”. And that is what we are doing in the system today, by creating a set of assessments around norms, by saying the metaphor of your snake is wrong.
Jo: Everyone has a snake. A powerful reminder that reveals the assumptions and social norms that might shape our perception of what is good and what is right for people. Stacey and Tricia’s conversation reveals so many tensions that exist in the question of ‘what story matters most?’ At the heart it reveals that our desire for certainty and understanding and the impact of mental health support means we strive for neutrality. This is a noble thing to pursue, but this pursuit has consequences. It can conceal deep rooted assumptions and judgements about people and what is good or not for them and it can impact on the quality and value of the very thing we are often trying to neutrally assess, the relationships between people needing and giving support. So, what story matters most then? Well, rather than one story mattering more than others, perhaps like Tricia suggests what is most important for Living Well systems is to bring the focus back on to our relationships as a means to be more curious about the questions of why stories matter.
The Living Well Dialogues is brought to you by the Living Well UK Programme, funded by The National Lottery and delivered by the Innovation Unit. For more information visit livingwellsystems.uk.