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Ep8: Yes to Positive Behaviour Support

Speaker Key:

JL               Jo Lourmpa, the Lead Specialist Support Manager for Lifeways

PC              Paul Crompton, Marketing and Communications Manager at Lifeways, and podcast host



JL               PBS, Positive Behaviour Support, follows you across your life, and the more people know it and the more people use it and the more people understand it, the longer we can carry that positive effect into someone’s life.

PC              Hello, and welcome to Yes to You, the Lifeways podcast. Lifeways is the UK’s largest team of support professionals who provide support for adults living in the community. In this episode, you’ll be learning about how we, at Lifeways, support people living with acquired brain injuries and how we use Positive Behaviour Support to ensure greater independence, quality of life and outcomes for people we support.

                   I’m Paul Crompton, Marketing and Communications Manager at Lifeways and your podcast host here. For this episode, I’m speaking to Jo Lourmpa, the Lead Specialist Support Manager for Lifeways and our inhouse expert for Positive Behaviour Support. Jo trains teams in understanding how to better support people, particularly those living with acquired brain injuries and other support needs, using Positive Behaviour Support and other support strategies as a tool. Jo, welcome to the podcast.

JL               Hello.


PC              Let’s start with some definitions. What is an acquired brain injury? What happens to the brain when it’s injured, and how do acquired brain injuries affect people?

JL               Okay, so an acquired brain injury is, essentially, an injury happening to the brain after birth, and it could be caused by a variety of things. It could be a car accident, it could be stroke, it could be related to any kind of trauma to the brain. Although our brains are quite well protected by tissue and bone and fluid, they are still quite vulnerable, so any impact or a disease can affect how our brain works.

                   And obviously, this is also affected by pre-existing conditions before the brain injury, so the age of an individual, any other disorders they may have, including mental health conditions. So, any kind of damage to the brain is, more than likely, going to result in damage to brain tissue, and once you have damage to brain tissue, you start losing cognitive functions. It could be a wide range of effects, essentially, on an individual, from memory to how we process language, vision, personality changes.

                   It’s very individual, and it depends on the part of the brain that is also affected. But what happens, and we see it quite often with people with acquired brain injury, is how it affects their lives. So, individuals, depending on the level of acquired brain injury, could lose independence.


                   They could lose very valuable life skills that help them live independently and function by themselves, and that starts impacting on quality of life. So, I’ll give you an example. For example, if we have impact to the front of the brain, what we call the frontal lobe, because we like being scientific sometimes, we tend to see changes in personality. Individuals can become quite impulsive and hard to manage their emotions, while, if we have damage to the side of the brain, we can have issues with the process of language, understanding and speaking language, as well as memory.

                   And you can see how that could impact and change someone’s life dramatically. And apart from the injury itself, it’s what happens after the brain injury, how life is affected, because then we have other conditions, depression and anxiety and a lot of frustration that can be related, confusion, because of the impact of that brain injury. So, it’s not just the brain injury itself, it’s the impact it has on someone’s life.

PC              Right, and I’ve met people with acquired brain injuries who sustained those injuries by, for example, falling down the stairs, getting into a car accident, getting into a fight. Do those tend to be some of the most common causes of acquiring a brain injury?

JL               They are, and also falls, believe it or not, especially in the older population, where we see that the impact can be quite significant. But it’s usually any impact to the brain, car accidents, fights. A fight under alcohol influence as well can have a very dramatic impact on the brain because of the lack of oxygen.


PC              What resources are available to support people with an acquired brain injury? Which is to say, do most people, or many people, with acquired brain injuries live in their own homes, or are individuals more likely to live in, for example, services for higher levels of needs, such as residential services or nursing-led care homes?

JL               So, in Lifeways, we have a very skilled workforce, and we provide a lot of training as well to support their development, and we have the specialist team as well. What is important here is to understand that there’s no one individual that can be part of that pathway. Needs to be a group of professionals and a group of carers that support that individual in their recovery, because recovery can take anything from hours to days to months to years to a lifetime of recovery.

                   So, we will work quite closely with community teams, so we will work with occupational therapy, speech and language therapist. We will work with neuropsychologists to establish how we can all work together to support that individual and tackle the different difficulties that come with that acquired brain injury. So, in terms of where an individual might live, it could be that they’re very independent, they have maintained most of their life skills, that they don’t need a lot of support, so they could be supported in their own home.

                   But it could be that the impact of the injury’s so significant that we see a loss of independence and a decline in living skills, in communication and cognitive ability, and for that reason, they need additional support.


                   So, it could be that they need to be supported in residential care or a supported living environment where there’s higher hours and staff are there on hand at any point to support them. So, it’s really down to how the brain injury has affected an individual and what level of support they need after that.

PC              Generally, people who suffer from an acquired brain injury, is it possible to get better, so to speak, or for the brain to heal? Or do we generally see, essentially, just a decline from then on in the brain’s function?

JL               Absolutely. Recovery is very possible. It just takes a group of professionals to support that individual and a very strong circle of support around them. The brain is plastic. It has plasticity. You can destroy parts of the brain, but you can use other parts to overcompensate for it. So, we could lose skills, and we see individuals after strokes, for example, who lose skills, but we can learn other skills to compensate for it. So, absolutely, recovery is possible, and recovery should be promoted as well.

PC              Right, and here’s where Positive Behaviour Support comes in as one of the topics of this podcast, also known by its acronym, PBS. And I understand that Positive Behaviour Support is a key tool that we use, or a toolkit, for supporting people living with acquired brain injuries and other support needs, such as, for example, learning disabilities and autism and mental health needs. So, could you explain Positive Behaviour Support in very simple terms?


JL               Okay, so Positive Behaviour Support is about understanding what is a person trying to achieve with a behaviour. So, we all behave in certain ways. We all behave in ways that, we’re trying to get something. We need something, and we behave in a certain way to get what we need, essentially, and Positive Behaviour Support looks at the behaviour and looks at how the environment, everything around us, meets that need for us.

                   So, instead of trying to change the behaviour directly, we try to create environments that produce what the person needs. So, it takes away the need to behave in a way that might be challenging and might be perceived as challenging. So, instead of trying to force a change in behaviour, we look at what the person needs, and we try to meet that need in advance and proactively.

PC              Right, and what counts as Positive Behaviour Support? And I’ll explain what I mean here, because, when I hear the phrase, Positive Behaviour Support, I assume it’s the opposite of negative behaviour. And when someone says to me, negative behaviour, I would think, for example, being rude, as you mentioned, people trying to get what they want, but doing that in a destructive way, such as being rude, being abusive, maybe just being short with people or, kind of snappy, or maybe even violent.

                   But then I could also say that, from my understanding, negative behaviour could also be, to use a terrible example, you know when you walk into a shop and the salesman or saleswoman is very nice and, maybe, smiles at you, maybe flirts with you and, kind of, manipulates you into doing what they want, even though it all seems very positive.


                   So, what’s the positive behaviour in the Positive Behaviour Support?

JL               Okay, so it is the opposite of negative, essentially, because traditionally, when we look at the way people with intellectual disabilities or mental health conditions have been treated in institutions, there’s been a lot of punishment and consequences with very minimal effect. We’re looking at very degrading approaches, very negative approaches. So, we’re the opposite of this. Essentially, we’re looking at a positive way to approach behaviour.

                   We understand that behaviour is serving a purpose. It’s not malicious. It’s not done to inflict pain on someone. It’s not done on purpose to cause harm. It serves a purpose. It’s done in a way because I need something, and it could be because I cannot speak about it, I don’t have the skills to meet my needs. I have to act a certain way to get what I need. So, Positive Behaviour Support is positive because we’re trying to understand that.

                   We’re trying to look at the person instead of their behaviour. We’re trying to focus on, how can I pre-empt what is going to happen and understand what that person needs and meet that need. So, we’re very positive. We don’t use aversive strategies. We don’t use punishment. Actually, it’s one of our core values, that we do not use punishment as response to behaviour, and we always look at the bright side of life a little bit, when it comes to positive behaviour.


                   And you spoke, in your example, you said someone could be violent. Then I will come to you, and I will ask, well, what is violent, and you will probably say, they swear. If someone asks them to do something, they swear. How can we stop the swearing? So, a PBS, or a Positive Behaviour Support practitioner will come in and say, well, how do you present that request? Do you present it in a way that the person understands what you’re asking them to do?

                   Do they have the skills to complete the task? Do they have the attention span to complete the task? Can we present it in a more positive way? Is there a way to frame this more positively? So, that’s what makes the positive of Positive Behaviour Support.

PC              Right, and is there a central definition of positive behaviour? Who’s defining positive behaviour here?

JL               This is a tricky one. Positive Behaviour Support is described as a multicomponent framework that looks at improving quality of life for individuals who are at risk of presenting with behaviours that challenge. And that sounds very technical. We emerged in the 80s. We emerged at the dark time of care, as I like to call it, where we have very large institutions, and it was all about moving individuals out of those institutions and back into the community to live fulfilling lives.


                   So, there’s no one definition for PBS. We are a framework.

PC              Okay. In other words, there’s no, necessarily, one consensus or one version of the truth of what PBS is? Is that what you mean?

JL               There are core values and theory and the ethos of PBS, and we have the UK-SBA, who are more focused on behaviour analysis. However, PBS does come under that same umbrella.

PC              Could you, perhaps, share some of those core values you mentioned?

JL               Yes, absolutely. So, when we look at the core values of PBS, we look at person-centred care. We put the individual in the centre. We take their wishes, their choices, their likes and dislikes into consideration, and we always need to be putting them in the centre of the choices we make. It’s not about creating the care that fits the staff hours or the building or what others want for the individual. It’s about what the individual wants themselves and those that advocate for them.

                   And then we look at more constructional approaches to, we call it, self-determination. We love being technical. But essentially, it’s believing that individuals with intellectual disabilities and anyone who can benefit from PBS has the ability to build skills. The reason they’re not building skills is because social care sometimes fails them. We were not able to provide a social care, the right level of support. There is not enough resource, and that’s why these individuals are not developing, they’re not progressing, they’re not building those skills.


                   But PBS firmly believes that that is achievable with the right support and the right level of care and the right environment. Then we look at always working with stakeholders and with the individual. It’s about partnership working. PBS, Positive Behaviour Support, does not work in isolation. We need to be working with other individuals, so you will see, members of our team will always link in with learning disability nurses, advocates, the family, psychology, psychiatry.

                   We all come together to form these interventions. It’s not just a one blanket kind of approach for everyone, and the most important thing for me as well is eliminating aversive or punitive approaches. Punishment, we know, does not work. Punishment is inhumane, it is degrading, and we need to be moving as far away from punishing approaches as possible. And those abusive strategies we see in things like Winterbourne View and still emerging in the news nowadays.

                   So, it’s very important to remove restrictions as much as possible and remove those punishing strategies, and these are the core values of PBS.

PC              Right. And let’s move on to the results, or you might say, the fruit of PBS. So, in my understanding, you are training other people, other colleagues at Lifeways who, in a sense, support directly people we support, and you’re training those people and those teams in PBS, Positive Behaviour Support, strategies. And of course, that training then gets utilised, if you like, with the people we support. And then, from there on, we get more positive outcomes. Have I understood that correctly?


JL               More or less, yes. So, my team has PBS practitioners as well as specialist trainers. So, the Positive Behaviour Support practitioners are the individuals that will go into the service, and they will complete the assessments. They will look at the environment. They will look at understanding the needs of the individual and how we can meet them. They will talk with the staff team, they will analyse information and then put together a very robust plan that addresses that environment and how that can increase quality of life.

                   And then, obviously, we have the specialist trainers who will offer the PBS training. And what we hope to achieve, and I think we do achieve, is that staff understand that there is more to behaviour than just the behaviour itself. Staff can stop and mindfully look around them and understand how they are part of the person’s environment, as well as other things happening around the person. And all these things contribute and create a context to that behaviour, and we can change that.

                   We call it antecedent control, essentially, changing the things that happen before the behaviour and that can trigger or cause a behaviour. So, what we want staff to do is to look at that and look at what can be triggering or causing behaviour and change that, because what we don’t want to do is have people who just react. The behaviour happens, and we react a certain way, and we try and control the behaviour because that will, quite often, lead to things like restrictions.


                   And it doesn’t change the core. If someone is sick, you don’t just put a plaster on it. You look at what’s caused the injury, what caused the sickness, and you’re trying to change that at the core, rather than continuously wiping away the blood and hoping it will heal itself. It’s about understanding that we’re part of that process. Therefore, part of that process, the individual circle of support, is part of that process. And that’s what we’re trying to achieve with our training, that understanding.

                   Behaviour serves a purpose. We need to understand the person’s needs and the person’s skills and how we can develop those skills, so they do not need to use behaviour to get their message across. They can just meet themselves or they have positive ways that are not harmful to themselves or others to meet that need.

PC              So, could you give us an example of a positive way to meet a need?

JL               Okay, so, say we’re supporting someone with an acquired brain injury and, as part of the brain injury, they have lost the ability to communicate or understand spoken language just as well. And it could be along the same lines that they have also lost some of their motor abilities and the skill to perform tasks they did before. Now, if you and I were in that spot, we would be very frustrated, quite demotivated to do things, so it could be perceived as, they’re demotivated, they’re not engaged.

                   They get quite agitated when we try to ask them to do something. It could be that we have a bit of swearing to try and get people out of the way. So, traditionally, someone would come in and go, well, you cannot do that. We’re not going to engage with you until you calm down.


                   What PBS says is, okay, let’s look at the individual’s needs and how they perceive language, for example. Should we break down our sentences and actually speak in keyword sentences, shortened sentences, allowing the individual time to process the information before we’re asking them to do the next step?

                   Could it be that some of that information they’re able to follow themselves, but we need to step in, in parts of the task, cooking, for example, and we will do the chopping, while they put the ingredients in? Could it be that they can only do parts of it and then they need a little break to calm down and then come back to it? Could it be that we need to use assistive technology, because not everyone can manipulate tools the same way?

                   So, there are a lot of things we can do to enable that individual to feel comfortable and confident to participate in that activity and communicate with us if they need a break, if they’ve had enough, if they don’t’ want to do this anymore. And if behaviour were to happen, actually, how can we react in a positive way, rather than going straight into, well, we’re not doing this with you anymore? You’re not allowed to come into the kitchen and cook anymore, because every time you do, then you get agitated?

                   We’re actually saying, okay, let’s take the cooking task somewhere else more positive. Let’s take the cooking task to your room because it’s quiet, and it’s a more positive environment that you like, and if behaviours do happen, we will just walk out, and we will come back in two minutes, and try and re-engage with you.


                   It’s not the end of an activity. There’s plenty of opportunity here to be meaningfully engaged and do something that is fun. And we’re not looking at the behaviour. We’re looking at the person and how can we make them happy.

PC              Would you describe Positive Behaviour Support as essential? In other words, is Positive Behaviour Support utilised properly? Is it going to change someone’s life radically, or is it merely just going to help someone’s life?

JL               Absolutely essential and life-changing. We are looking at lifelong changes. We’re looking at skills that can be used and generalised in different settings, different environments and different situations in life. So, PBS, Positive Behaviour Support, follows you across your life, and the more people know it and the more people use it and the more people understand it, the longer we can carry that positive effect into someone’s life.

PC              Right, and it’s not a great word, but I imagine there might be quite a few epiphanies or moments of realisation when people receive Positive Behaviour Support training. Many people, of course, grew up in family homes where there wasn’t a lot of positivity regarding communication, where behaviour and communication was almost always negative. And for people who didn’t grow up in such environments, everyone on earth knows somebody who communicates in an extremely negative way, even that may be themselves.


                   So, when you’re training teams and colleagues in Positive Behaviour Support, do you ever get those moments where it can be even transformational for the colleague who’s being trained in it?

JL               We live for those lightbulb moments, when staff in our training, their eyes tear up, and they go, it makes sense now. Because it’s very easy to feel behaviour is targeted at you, it’s personal, there’s a purpose for it to upset you, as a carer. And actually, we reframe it, essentially. We reframe behaviour. We present it in a different way that perhaps someone who has been raised in a negative environment, who hasn’t been exposed to these opportunities for good, meaningful communication and good, meaningful activities and participation, wouldn’t necessarily understand it.

                   And that’s the beauty with PBS. It can be used anywhere as well. So, I have a lovely six-year-old now, who… We use PBS in the way we approach things in life and in the house, and you can see how it helps develop that confidence and that skill in life and that positive approach to problems as well. So, absolutely, we love those lightbulb moments. We love to see staff going away and then coming back, and receiving the feedback that… I have tried it, and it works, and it’s great, because it has changed the way I work as a person.

                   It’s not just a one intervention I will make a slot in my day to do between half two and three. It is a change in the culture and change in the approach in the way we work that makes that difference.


PC              Right, which begs the question, are there any times when it doesn’t work, or when people have come back, saying, well, actually, these strategies haven’t worked? And if they haven’t worked, has it been the case that the strategies were not applied correctly, or are there people, with which it’s simply not an effective modality?

JL               Absolutely. I think it would be a little bit delusional to think that PBS is the only intervention that works, and it works 100%. There is not one treatment that works 100% out there. What we see is that sometimes there are biological factors, so it could be health issues that are causing behaviours that challenge. It could be changes in the environment that haven’t been shared with us and they haven’t been understood, that perhaps we didn’t notice at the time of the assessment.

                   But it could also very well be that individuals go away, they try to apply the strategies, but perhaps they don’t understand them that well themselves. So, that point is a big part of PBS as well, is being able to coach and mentor and go out and observe others implementing PBS and being able to bring them back and give them that feedback, and then send them out again.

                   So, it’s not a textbook that I will give to you, and then you go away, and you try and do it, because it doesn’t transfer like that, doesn’t translate like that into a service. We have to be actively present, and we have to observe it happening in the right environment, in the environment it was designed to be. You can’t create a person-specific, environment-specific intervention and not see it applied in that environment and go, does it fit?


                   Do we have what we call goodness of fit here? Are people following the guidelines? Are they following them confidently? And also, as a practitioner for Positive Behaviour Support, I try and implement some strategies. I also need to explain why, because I’m more likely, as a staff member to apply certain strategies if I understand the reason behind them, and not just being told, you need to go and do A, B or C.

                   And also, as I said, Positive Behaviour Support, it’s a multicomponent framework. We need support from other professionals. If we’re supporting someone, as we said, with an acquired brain injury or a mental health condition, we need to have the appropriate professionals around us to help us. It could be that we need to work alongside psychiatry and make sure the right medication is in place, we have the good understanding of how mental health can affect a person’s progress.

                   Same with acquired brain injury. If we don’t understand how that brain injury has affected the brain, then our interventions will not be targeted. So, we need to have that multidisciplinary approach as well to make sure we’re effective. And Positive Behaviour Support is a live thing. We can constantly review our interventions and our plans and all the information that comes in and go back to the drawing board and get feedback from the staff teams as well, the individual themselves and their families.


                   If something doesn’t work, let’s all sit around the table together and see what we can change and how we can make sure that things work and translate, and people are comfortable to go away and practice them without needing constant supervision.

PC              Right, so let’s talk a little bit more about this multidisciplinary framework. What else is in the framework apart from PBS, Positive Behaviour Support?

JL               Any profession, really. For example, PBS, Positive Behaviour Support plans, a big part of that is communication, how we communicate. Now, we need a speech and language therapist to come in and advise us, provide those guidelines, and then we can adapt them on how staff should communicate. If we’re supporting someone with sensory needs, we need the occupational therapist to come in and say, this is how we need to support their sensory needs. It could be around sound or light.

                   It could be around pressure to the body. We need all those professionals to come in and work together to create those plans. No one profession should work in isolation, in my opinion. We all need to work together, consolidate all our information and guidelines into one plan. We don’t want carers to have to follow different plans from different individuals. We want a central location. We can holistically bring all this information together and make it work.

PC              So, imagine you have the opportunity to tell the entire world just one sentence, one key learning from Positive Behaviour Support. What is that?


JL               There is a really good phrase I like to use, that if a flower doesn’t bloom, you change the environment, you don’t change the flower itself. So, if an individual is having difficulties that impact the quality of life and put them and others at risk, look at the environment. Look at changing the environment, and make it work for them. Don’t try and force them in environments that don’t work for them.

PC              Right. If a flower doesn’t bloom, change its environment.

JL               Absolutely. Do not try and change the flower.

PC              This is the very last question. What do you hope to achieve at Lifeways? What’s a broad goal that you have that you keep aiming for? Or what would you like to see made better?

JL               I want every individual in our services, and I think that is achievable if we put the right effort in place, and we do, who is at risk of behaviours that challenge, and is at risk of a decline in the quality of life, to have a staff team in place who understand and apply the values of PBS and Positive Behaviour Support. I want that to be an everyday practice. I want it to be a cultural influence in our services, and I want individuals to be able to live independently and actually step down and move into the community and have those fulfilling lives, rather than being restricted and labelled by their disability, to actually be fully integrated and PBS be a big part of their journey.


PC              Fantastic. Well, thank you very much for speaking to me, Jo. It’s been great.

JL               Thank you for the opportunity.

PC              Well, it’s really great to have your insights on supporting people with acquired brain injuries, and how and why Positive Behaviour Support is an effective tool. And thanks to you, the listener, for tuning in to this episode of the Yes to You, the Lifeways Social Care podcast. We’ll be releasing new episodes all about adult supported and residential living every month, so if you haven’t already, please do subscribe to this podcast. See you next time.


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