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Episode Six Shownotes

The latest episode of the Louder Than Words Podcast looks at the impact of brain injury. How do we find out more about more about the problems survivors face? What needs to change in the way we support them live their lives?

In the UK 700,000 people end up at A&E every year with a head injury, according to NHS figures and around a million people are now living with some sort of brain injury. Survivors include injured sports people, or road accident victims. There are also survivors who've been through things like severe infections or strokes.

Novel research at the University of Essex is leading to a big shift in policy to help survivors, while also developing technological solutions to help with everyday tasks.

They will be speaking to:

  • Dr Andrew Bateman (4:29) from the School of Health and Social Care at Essex is project lead for COURAGE Network which brings together people affected by, and living with, neurological conditions, with the research community. The innovative project is initially funded by UK Research and Innovation (UKRI).
  • Caroline Bald (8:01), from the School of Health and Social Care at Essex, is looking to improve training in the UK so social workers see that understanding brain injury is an integral part of their work.
  • Chloe Hayward (11:33), Executive Director of the UK Acquired Brain Injury Forum, which aims to promote better understanding of all aspects of acquired brain injury.
  • Dr Anirban Chowdhury (15:16), Lecturer in Neural Engineering and Robotics at Essex, who is developing a brain computer interface to control an exoskeleton to support movement, just through the power of thought.
  • Stella Kerins (18:29), Head of Brain Injury Care Services at Headway Essex, which supports people with acquired brain injury and their families so that they feel supported and so that they can live their lives to their optimum.

The Louder Than Words Podcast

Professor Jules Pretty and journalist Martha Dixon have created the Louder than Words podcast to encourage difficult discussions, to offer a platform to people making a difference and to explain how you can take action on issues you care about.

This is the first podcast series from the Centre for Public and Policy Engagement and was developed with CommsConsult.

The Louder Than Words Podcast shows how research delivers solutions to global problems, how we can improve people’s lives and how we can inspire people to take action now. Each episode of Louder Than Words will look at a key global issue and give you a chance to hear from leading researchers, policy makers, thinkers and campaigners plus those directly affected by the issue.

The first season looks at climate change, migration, mental health, inequality and nature as therapy. Join us and subscribe to upcoming podcasts.

Episode Six Transcription

Jules Pretty 0:05 Welcome to Louder Than Words the podcast from the University of Essex. I'm Professor Jules Pretty.

Martha Dixon 0:12 And I'm journalist Martha Dixon. This episode is all about brain injury.

Jules Pretty 0:21 In the UK 700,000 people end up at A&E every year with a head injury, according to NHS figures.

Martha Dixon 0:29 And around a million people here are now living with some sort of brain injury.

Sue Williams 0:35 I was out cycling and I got hit by a car.

Jerry Hefferman 0:38 I had viral encephalitis. I still have great difficulty in sleeping. Short term - short term memory issues.

Jules Pretty 0:47 We'll see how novel research at the University of Essex is leading to a big shift in policy to help survivors,

Caroline Bald 0:55 And my - my hope is that all social workers will become brain injury social workers in the sense that we will acknowledge emotion is linked automatically with the brain.

Chloe Hayward 1:05 And I think this is one of the terms that I was quite horrified about, that people would hear that term and equate it to someone being a vegetable, which is so far from the truth.

Jules Pretty 1:17 And we'll be unveiling inventions that will help survivors of brain injury to start doing simple tasks.

Dr Anirban Chowdhury 1:23 In the video, we can see that a stroke patient is doing her hand, hand opening and closing practice by triggering the hand exoskeleton using her brain signals.

Martha Dixon 1:35 Brain injuries are surprisingly common.

Jules Pretty 1:38 A traumatic incident can be the cause.

Martha Dixon 1:41 Survivors include sports people, or road accident victims. There are also survivors who've been through things like severe infections or strokes.

Jules Pretty 1:51 Problems can be hidden but very debilitating.

Andrew Bateman 1:54 Oh, good morning everyone. Thanks for joining me. What we'll do is we'll introduce ourselves to start with. So for those of you who haven't met me before, I'm Andrew, I'm a researcher at the University of Essex.

Martha Dixon 2:06 Dr Andrew Bateman from the University of Essex holds regular meetings with brain injury survivors.

Jules Pretty 2:13 It's all about finding more about the problems they face and what needs to change.

Jerry Hefferman 2:19 Hey there. Good morning, everybody. My name is Jerry, Jerry Hefferman. I'm 45. And I live in Aubrey in North Lanarkshire.

Sue Williams 2:30 Hi. I'm Sue, Sue Williams. I live in North Wales. In - in Conway, which is lovely, with a castle.

Jerry Hefferman 2:37 Myself, I- I had viral encephalitis. At the time I was working, I was working as a coach driver. I was doing a lot of inbound coach travel and organised tours throughout the UK. And also Europe. Very, very busy schedule, lots of travel. And it all stopped - it all stopped very, very rapidly.

Sue Williams 3:08 I was out cycling and I got hit by a car. At the time, nobody told me I had a brain injury. I had a lot of other injuries - spinal, jaw, teeth - and it was only really when I went home on my own, that I realised that the world was a very strange and very scary place. And I didn't understand what was happening or why it was happening.

Jerry Hefferman 3:31 I still have great difficulty in sleeping. Big problems with fatigue. Short term - short term memory issues. I think they call it aphasia.

Sue Williams 3:46 My speed of processing is very slow: about 10% of an average person. And my working memory is about 1% of an average person, which means it doesn't work really very well at all. And it affects every bit, I think, of every day in ways that people don't see and they don't realise. So it's hard to adjust and to find out who you are after you have an accident like this after you have a brain injury.

Jerry Hefferman 4:18 Like forgetting words, getting words jumbled up, residual headaches. Tinnitus -

Andrew Bateman 4:29 Yeah, that's a right old mess, isn't it, Jerry? Yeah. Yeah. Well, thank you for sharing, sharing your -

So there's so much that we don't know about brains and brain injury. You know, we- it's well known that the brain is one of the most, possibly the most complicated thing in the universe. Billions and billions of brain cells, and how they recover after shock and trauma, is still on the discovery curve end of things.

I've been working in brain injury. Well actually since I graduated as an- originally as a physiotherapist back in 1990. And I've done research in, in brain injury fitness training, and then in cognitive neuro psychology, which is about the study of the brain and how it can go wrong, how our thinking skills can go wrong. And following that I moved into clinical services where I was running services to help people overcome the problems caused by brain injury. And it was there that I saw the need for new technologies to help people with brain injury. And I also saw the need for change at policy level that services weren't getting commissioned by the National Health Service and other purchasers to provide the rehabilitation that people need. And I saw the opportunity to come and work here as a way of building on the work I had been doing leading rehabilitation services to work on a bigger scale to try and achieve some of the things I wanted to achieve in making a difference for people with brain injury.

Martha Dixon 6:22 Andrew wants serious policy shifts throughout the country for brain injury survivors.

Jules Pretty 6:28 To make this happen, he has set up a wide reaching and pioneering new project called COURAGE.

Martha Dixon 6:33 It connects all the players, puts research into it, and then helps decision makers understand what needs to happen.

Andrew Bateman 6:41 So the university has a terrific resource in terms of experts in, in policy, both within our school and- and across the whole university. So I sort of felt inspired by that voice that Essex is actually renowned for challenging systems, and challenging politics and being engaged in and part of the political lobbying story.

Brain Injury has a wide range of impacts across the whole of society that is just not visible to people. It's often not talked about even the very brain injury itself may be lost, you know, as a medical episode, but not something that's of importance to a teacher in a classroom or to a prison officer or a social worker. So, so one of the things that we have to change is, is helping people recognise that- that brain injury happens to so many people in all walks of life, and that we can do something about it if we name it and understand the consequences.

Caroline Bald 8:01 My- my hope is that all social workers will become brain injury social workers in the sense that we will acknowledge a motion is linked automatically with the brain and the- the space in which the brain sits.

Jules Pretty 8:14 Also pushing for change is social work academic Caroline Bald.

Martha Dixon 8:19 Her work at the University of Essex is focused on helping the social workers of the future, across the country, understand that brain injury could be a missing part of the equation when explaining behaviour.

Caroline Bald 8:32 So for an example, we would routinely ask, perhaps, female survivors of domestic violence about their experiences, but we wouldn't naturally connect the fact that they may have been strangled as part of that experience with asking that question did they lose consciousness. So, often, we then find is that women, as with any- any one experience- or surviving an offence, often goes through a period of emotional distress. And that can also lead to something like addiction or heavy drinking: outward behaviour, unusual behaviour, an element of grief and I think what ends up happening is that behaviour is understood from a sociological perspective as reactionary. Rather than an organic - view of the fact that by being strangled, and perhaps losing consciousness, there may have been an organic change to the brain. So women may present as saying, I don't feel that myself. They may get their words in a tangle. They may lose- feel that they lose time. They may find that they become increasingly anxious. That- that outside spaces become anxiety-provoking, loud noises. Brain injury can be so subtle it could be a very subtle shift that women might speak of not feeling them themselves anymore. And that is something that they may then come to accept as just a simple shift in- in who they are, rather than asking the question.

So what we hope to do is make sure that all social workers, all social work students who are training in England and Wales, understand that brain injury is an integral part of their work. Recognising that when considering somebodies whole self, they also consider the brain and how the brain injury in itself can often result in changes in behaviour. And the person wouldn't necessarily know that themselves. I think this is a huge gap not to have reference to brain injury. And I do wonder whether that is as a result of the separation of social work and criminal justice, where antisocial behaviour for want of a better word is- it could become other when we work with mums, and maybe if a mum isn't doing what we expect them to do we immediately think is because they won't versus that they can't.

Chloe Hayward 11:33 One of the terms which is medically used for those people is being in a vegetative state. And I think this is one of the terms that I was quite horrified about that people would hear that term and equate it to someone being a vegetable, which is so far from the truth. And it's something that I feel needs to be changed and better understood.

Jules Pretty 11:53 A major player in the new COURAGE project is Chloe Hayward,

Martha Dixon 11:57 The director of a charity that supports people with brain injury, the UK Acquired Brain Injury Forum.

Chloe Hayward 12:04 So what's wrong now is that people who have acquired brain injuries often don't get neuro rehabilitation. And that is quite specialist. And so we have a situation where often someone who has a traumatic brain injury may receive good acute medical treatment, but they're then sent home with very little support or care or rehabilitation. And that's so badly needed, because that's what enables people to regain their life really, to be able to get back to work to be able to operate as part of a family to be able to sustain social relationships. So that I feel is really important, it's not equitable. And the situation with the new funding arrangements at the moment mean that that is going to be even less equitable than it is at the moment. There's going to be even more regional variability as to who can access that type of care and who can't.

Jules Pretty 12:59 Chloe's focus is to help change the face of rehabilitation for brain injury survivors. And the University of Essex and the COURAGE project have become vital in helping her do that.

Chloe Hayward 13:11 So the UK Acquired Brain Injury Forum is a charity. And much of our work is based around lobbying and trying to change policy. So, the way in which we do that is we bring groups of experts together to help us support the recommendations that we're making. It's really important for us to have good academic partners, because they are able to provide an evidence base for the types of things that we're asking. So if we don't have published research to back up the claims that we make, and the demands that we make it- we don't have a very strong argument. So we, we definitely need those academic partners. We need clinical partners who are able to show us what's happening in health and social care. We need people with lived experience who are able to talk to us about their life experience of acquired brain injury and what actually happens in reality,

Martha Dixon 14:06 Chloe says investment in rehabilitation for brain injury survivors will save the public purse in the long run.

Chloe Hayward 14:13 Some of our research has shown that the government spend an enormous amount of money on people with acquired brain injury by not dealing with them. So in terms of sort of providing benefits for people, those sorts of things- not getting people back to work, not getting people back to their optimum level of recovery is enormously expensive. And so it's hugely important from a financial perspective. But also the social consequences of not helping people are gigantic and I get numerous calls from people who are swinging from crisis to crisis it's heart breaking, you know. They just are in a situation where their families have broken down, they're not able to sustain employment, they're just not able to participate in life to- to a full extent. And it's really unfair that people are left in that sort of situation without proper support.

Anirban Chowdury 15:16 In the video, we can see that a stroke patient is doing her hand expand opening and closing practice by triggering the hand exoskeleton.

Jules Pretty 15:25 Part of that proper rehabilitation support is inventing new ways to help brain injury survivors cope with everyday tasks.

Martha Dixon 15:33 That includes futuristic brain tools, an exoskeleton that moves your limbs for you through the power of thought.

Anirban Chowdury 15:41 - triggering the hand exoskeleton using her brain signals. The EEG signals from her brain is echoed by the electrodes in the body. And it is processed by a macro based signal processing software, which sends the control command to the exoskeleton.

Jules Pretty 15:57 This fabulous invention is the handiwork of Dr. Dr Anirban Chowdhury from the University of Essex, it's another cornerstone of the COURAGE project. Its aim is to help recovery for brain injury survivors.

Anirban Chowdury 16:10 So what we're creating here is that we are- we are building a brain machine interface, which basically taps into their thinking. Okay, so when they are thinking about a motion, although they can't actually do it, but they can generate those signals in the brain, which doesn't come through our nervous system to our peripheral nerves like our hand or leg, etc. So that's why we are using a robotic device to assist them in doing those activities. And they can trigger these activities through their thought.

For me, the exciting thing is seeing changes in the people's life. So as we started with this technology, we are not quite sure how it- how it can impact in their standards of living. But as we continued our research, we see real changes in their daily living activities. And people have expressed their observations in little things like tying a shoelace, or maybe a tie- or buttoning their shirt. So these little things which are very important for them, which we take it for granted, and we don't seem very much like blessed to - having these abilities. But for them who lost these abilities after so many years of life. Having, like getting those ability back brings a smile in their faces. And that's the- that's, I think, the most important thing, most important motivation behind my research.

Martha Dixon 18:29 Another key part of the new COURAGE project is to think about the future, and innovate.

Stella Kerins 18:35 Our work is to support people with acquired brain injury and their families so that they feel supported and so that they can live their lives to their optimum.

Jules Pretty 18:46 For the brain injury charity Headway, that means working with students from the University of Essex in their centres.

Martha Dixon 18:53 Here's Stella Kerins.

Stella Kerins 18:53 Speech and language therapy students and occupational therapy students who will come to our centre on a placement where we will learn from them and they can bring new ideas into us and challenge our thinking. And also they will be able to see what it's like working with clients in reality. I just think having students, it brings in new thoughts to how we operate our services. And you know, my thought is that we will allow the students- we'll say to the students after a couple of weeks, you know, you've witnessed our sessions, would you like to contribute to one? Would you like to actually devise the session? Then we'll look at it and see if it's something that's really good. It brings new ideas in for the clients, they like to meet new people. It's really important for our clients actually, socialisation, and it's one of the things that they get through Headway. They get peer support, they get support from our teams, but also we sometimes - you know, we might go out for the day might go bowling, we might go out to a garden centre and to do normal things that normal people are doing. Sometimes people haven't got the confidence to do that and having the students alongside them, they just feel you know, the more people that are working with them and talking to them, they just really enjoy it.

Martha Dixon 20:21 You've been listening to Louder Than Words. This episode was all about brain injury. We talked about the new COURAGE project hosted by the University of Essex, that reaches out across disciplines for solutions to help those affected by brain injury lead better lives.

Jules Pretty 20:40 Thank you for listening. This was the Louder Than Words podcast from the Centre for Public and Policy Engagement at the University of Essex. You'll find links to the contributors and their work and books on the Centre's website.