Sofie - Intro: 

What do science communication and a traumatic brain injury have in common? 

[Intro Music]

Welcome to this month's episode of the Disabled Scientist Podcast. 

I'm your host, Sofie, a disabled researcher. And today I'll be introducing you to Mr. James Piercy, a patient and public involvement and engagement lead at the HealthTech Research Centre in Brain Injury, who himself has experienced a traumatic brain injury. 

Let's get on with the show! 

Sofie [Host]:

What is a traumatic brain injury? 

James [Guest]: 

A traumatic brain injury is a physical insult to the brain. 

So if you get hit on head or something pierces your skull or a kind of whiplash injury, brain is shaking around inside the skull. 

All of those things are traumatic brain injuries. 

As opposed to an injury which might be like a stroke or maybe it's hypoxic injury. 

It's something which stops oxygen getting through to the brain. 

So, yeah. So physical insults the brain, traumatic brain injuries. 

And there are many. Something like every four seconds somebody goes to hospital in UK with some kind of head injury. 

Sofie: 

Wow. 

James: 

Most of those won't be serious and they probably won't even need any treatment, but there's huge numbers. 

Sofie: 

What does it mean for you? 

James: 

Well, I had mine in a car accident 14 years ago, so it's been quite a while. 

What it means to me is that I've had to change the way that I kind of live and work, I think, and it's taken- taken a bit of learning to get to the stage where I am now. 

And I think at the moment, fingers crossed, it doesn't affect me very much anymore. 

But that's mostly because I've learned how to handle it. 

Sofie: 

Could you explain some of the ways that you've learned how to handle it? 

James: 

Yeah. So one of the biggest impacts is fatigue. So everything is much harder work. And that's physically because the brain is creating new neural pathways and they're slower than the ones you had before the injury. 

So that means you get really tired and it's not. You're not tired, like a physical exercise thing and have a nap and make it better. 

You're cognitively overloaded and exhausted. So going into busy environments is really difficult in the early days and I still struggle a bit with that now. 

And so basically what it means is I need to plan. 

Sofie: 

Okay. 

James: 

Okay. So this chat we've had this morning has been in the diary for a little while. 

I've got my head around what it's doing. I've made sure I've got up in time, had something to eat and I'm kind of ready to go. 

And I know what I'm doing for the rest of the day. Hey, I know what I'm doing for the rest of the week pretty much. 

I've got a list on the wall of what I'm having for dinner every day this week. 

I'm not going to be spending time worried about that and thinking about it. 

Yeah, it's planned ahead. So that's my biggest strategy really, I guess is kind of planning and  preparation. 

Sofie: 

That's really interesting. So something I've been thinking about in terms of the traumatic brain injury is that for myself, as far as I'm aware, I've always been autistic, but I develop mental health problems in my teens and so I have a sense of a before and after developing mental health problems. But it was a very gradual thing. 

My understanding is that your situation, developing your condition would have been a very abrupt thing. 

Did you have any health conditions before your, your injury? 

James: 

No, I was, was I 39, fair, a little bit overweight like most old men, but you know, kind of active, capable. 

I've always suffered with headache but apart from that I was fine. 

And then obviously my injury happens literally at a moment. 

So I'm in a car accident, one minute I'm going down the road and the next minute I'm in a coma. 

Sofie: 

Yeah. 

James: 

So it was immediate with a caveat in that I have about three and a half weeks of post traumatic amnesia. 

So often after a serious injury to the brain, you lose the ability to form new memories for a period of time. 

So whilst my injury was immediate, I didn't know anything about it for at least three and a half weeks because no memories were formed during that period. 

So I didn't sort of have time in hospital to get used to the idea really. 

And that happened I guess over the next few months after I was discharged from hospital and kind of appreciating what's harder now than it used to be before four, because I didn't really have any serious physical injuries. 

If you see me around, you notice I wear an eye patch. 

And that's because I had some fractures around my eye socket and one of those led to one of the muscles that moves my right eye being trapped and that's never properly recovered. 

So I have double vision, hence the eye patch. But that's the only physical sign really that anything changed after the accident. 

I didn't break any bones or anything. And I was fortunate that my head injury didn't affect any motor functions. 

So I could walk perfectly normally, you know, and sort of move myself around the place. 

So it wasn't Immediately obvious even to myself, what was different 

Sofie: 

Yeah. 

James: 

And I say it's only when you start trying to do stuff and you think, mate, I'm really tired now. 

I am sleeping like 20 hours a day. What's going on? So it's a kind of gradual kind of learning journey and I guess sort of trying to push myself to do stuff and then thinking, no, do you know what? Let's just not doing that at the moment, thanks.

Sofie: 

In terms of what you've discovered you're able to do, how has the recovery been? 

James: 

It's- I'm much, much better than I was, first of all. And in the first six months after the accident I made enormous recovery. 

It was almost obvious day to day that I was getting better. 

And then it slows. And you sometimes will hear people say that you've got about two years after brain injury and that's as good as you're going to get. 

That's just nonsense, and there's lots of research that says that that's just nonsense. 

You continue to improve lifetime after stroke or traumatic brain injury, but it's much slower. 

So it's much harder to notice that change and that improvement. 

But I can look back and see that, you know, in, in the first couple of months I wouldn't have been able to do this. 

Sofie: 

Yeah. 

James: 

For example, and I remember the first time I went to the supermarket. 

Woo. Living the dream! Did some shopping. It was hard work and I was really tired. And supermarkets are horrible places. I mean you might find this yourself. So much stuff going on, so much noise, the lighting. 

So many people around. 50 different kinds of baked beans. They're awful. Really, really difficult environments for many people and I really struggle with that. 

And now I get annoyed with people who dither. But I think I did that before, you know, now I'm fine in that sort of environment because I know what it's like and I know that however hard and unpleasant is, it's going to be over pretty quick. 

And believe me, I'm pretty quick when I go shopping. 

Sofie: 

Yeah. 

James: 

And I can manage it. 

Sofie: 

The fact that there is hope for lifelong improvement after an injury like that seems really promising. 

It seems really hard to tell people that two years is it. 

James: 

Yeah. And that two year thing was quite common for a while. 

I was told it early on. It's much less common now, which is good. Having said that, of course you have to bear in mind that for some people they aren't ever going to make a really good recovery after a severe brain injury. 

There are many people who are left permanently disabled. 

There are many people who won't ever regain anything like full function after a brain injury. 

And what's really difficult is that the outcomes are really hard to predict. 

So you can see two people with very similar brain injuries. 

Look at them on a scan, they'll look really similar, but they'll have very different outcomes. 

And we don't really know why that is. It's likely that there is some connection to what they were like before the injury. 

Um, certainly there was a piece of research done in the states probably about 10 years ago now which said that if you've been to university, you tend to have a better outcome. 

Sofie: 

Yeah. 

James: 

So that suggests there's this idea of cognitive reserve. 

So if your brain is used to learning stuff and making new connections, it will be better at doing it when it needs to after an injury. 

That's kind of hypothesis, but it sort of makes some sense that, you know, if, if your brain is used to rewiring itself, which is what it does every time you learn something, then you do better. 

And we know similarly from dementia studies. 

Sofie: 

Yeah. 

James: 

That people who learn stuff and spend their whole lives learning stuff are less susceptible and if they get dementia, it progresses more slowly. 

Sofie: 

That makes sense. Yeah. I've definitely heard of work in dementia looking at previous education, but hadn't for head injuries. 

James: 

Yeah. So it's in similar kind of theory. I guess so. Hey, you know that chemistry degree is finally paying off. 

Sofie: 

Yeah. Is that what you studied before? 

James: 

I did, yeah. At UEA I did a chemistry degree. I mean, so long ago that there weren't as many elements. 

Sofie: 

Okay! 

James: 

But- but yeah, and I- and I- I think, I guess I've continued to try and learn stuff. 

Sofie: 

Yeah. 

James: 

Just naturally because I'm interested in that stuff. 

And one of the reasons that I didn't become a chemist and moved into, sort of, science communication engagement work is I just get to meet and learn little bits of loads of fascinating stuff. 

It means that I know a tiny bit about loads of things and not very much about anything, but I quite like that balance, actually! 

It's- It's kind of interesting to meet new people and learn new stuff. 

Sofie: 

How did you get into doing science communication? 

James: 

So, in the last year of my degree, there was a module on science communication. 

Sofie: 

Uhhuh. 

James: 

So I took that and it was kind of interesting, and we learned some stuff about science museums and stuff. 

And then I went to the careers office at UEA and there was an ex-student who was working in the science center. 

So I wrote to him and I went to visit him where he was working and then a couple of years later he moved to Norwich and opened a hands on science center and gave me a job. 

Sofie: 

Ah. 

James: 

So that was nice. And so I worked at a little science center in Norwich for about 13 years and then I moved and worked for another company doing work in schools and. 

And then at the John Innes Center in Norwich, working up there, helping people talk about plant microbial science. 

And now I'm just about to start a post working in patient involvement and engagement in medical research, which is using some of those kind of skills in talking to people and making science accessible, but also encouraging people with lived experience of injury - and it's brain injury I'm working in - to come and meet with researchers and innovators and give their perspective so that we don't waste time and money developing things that aren't needed and that when we do develop new technologies we know that they're going to be usable and accessible to the people that need them. 

Sofie: 

That's really important. 

James: 

Yeah, and this sort of patient involvement thing, it's been going a long time actually, but it was completely new to me and I only found out about it because one of the registrars that I'd seen in hospital sent me an email saying you might be interested in this clinical guideline group. 

And what you do in a clinical guideline group basically is they review all the evidence around a particular condition and they like to have expert input, and that includes from laypeople, people with lived experience. 

Sofie: 

Experts by experience. 

James: 

Yeah. So, I worked on the major trauma clinical guideline group which was fascinating, and through that I got invited to join a research study as a lay member. 

So that was kind of interesting. And I spent about, well, nearly 10 years actually being the involved patient and talking about brain injury and sharing my experience in a range of different studies and guidelines until it got to the point where I thought, you know what? 

I'm not, I'm not really a layperson anymore. I'm sort of a semi-professional layperson. Yeah. People invite me to join things and I'm interested and they think James is good, we know him, he'd be cool. 

But is that really the best way to do it? My injury was a long time ago. Medicine has probably moved on, we hope in 10 years. So I switch role to helping other people to do it rather than doing it myself. 

But I think still having that lived experience is valuable. 

So it makes it easier for me to connect with other patients and carers because we have a kind of shared understanding of the thing. 

Sofie: 

Were there patient Involvement professionals involved when you were sharing your experience? 

James: 

That's a good question. I don't know that there were. I don't remember being recruited by somebody with that sort of job title. 

But I may be wrong, but most of things I did came directly from the researchers. 

But that was mostly, I think because I'd met people. 

Sofie: 

Okay. 

James: 

I've always, you know, sort of throughout my working career I've said yes to stuff. 

Sofie: 

Yeah. 

James: 

And- and you meet people. I was thinking a while ago about, about job interviews and I've done quite a few different jobs over the years and I don't think I've only ever had two interviews. 

Sofie: 

Wow! 

James: 

No, that's not true. I've had four. And two of the jobs I didn't get and, and the others, it's just you meet somebody and they think, oh, we've got this thing coming up. 

Yeah, you'd be good. Are you interested? You know, and that might be, you know, a day here or a day there or it might be a sort of long-term post. 

The danger of that is that you miss out on really cool people who don't say yes to stuff. 

And so certainly when I'm looking for people and trying to get people to take part in activities or working with people, I really try hard not just use the people I met. 

Sofie: 

Yeah. 

James: 

And to kind of reach out. But yeah, as I say in, in terms of my own career, you can call it a career. 

It's been quite helpful to have met people and said hi. 

Sofie: 

Very much a who you know- well, you've got a bit of what you know, but- but who you know is very important. 

James: 

Yeah. And I think I went to a job interview once actually, I didn't get it. 

It's one of those things and the guy told me this expression, he said, share your biscuits. 

Sofie:

Oh? 

James:

I said what? He said, share your biscuits. Right, if you've got stuff and you can share ideas and thoughts and help people out, you karma, right. 

It comes back to you later on in the time. And I thought, yeah, do you know what? I'd shared my biscuits in that interview and the reason I didn't get the job is I said, you know what, I think you'll just be bored because you're okay, you're too good for this. 

You're bit sort of over experienced and overqualified. 

But thanks for sharing your biscuits and giving us some thoughts about what we need in this post. 

Kind of a two sided thing really. But yes, I think I've always done that. I've kind of like to share stuff that I found out, you know, with other people. 

Sofie: 

Yeah. 

James: 

And hopefully sometimes, at least, it comes back. Right? And people share their biscuits with me in return, and we sort of learn from each other along the way. 

Sofie: 

Yes. I think that's a little bit of the sort of thing that I'm hoping to achieve with this podcast. 

James: 

Yeah. And I think sharing experience is enormously important. 

And- And one- I- One of the first things I did talking about my brain injury was to write a presentation. 

Sofie: 

Yeah. 

James: 

And I traveled around all over the place giving this talk, and people were kind enough to say lovely things about it afterwards. 

But what really always hit me was when somebody would come up and say, thanks for understanding. 

Sofie: 

Yeah. 

James: 

So, you know, there'd be somebody in the audience, maybe they had a relative who had a brain injury or had a brain injury themselves, and just having that connection, somebody else who understands what you're going through, was really powerful, and it really sort of pushed me to do more in that space. 

And, you know, it's a lovely polish for your ego when people say thanks and say nice things about you, but to feel like you've actually made a difference is really powerful. 

So I did that show. I did it all over the place. I even got invited to New Zealand to go and talk about my brain, which was amazing. 

And then I made a version of it for radio. So I made a piece of Radio 4 in the World Service. “My Head”, it's on BBC Sounds, look it up! And I spoke to the producer, I said, how many people do you think listen to this program? 

He said, well, given when it went out, maybe a million. 

Sofie: 

Yeah. 

James: 

I only know what three of them thought. Right. 

Sofie: 

Yeah. 

James: 

You cast this stuff into the board and you don't get any feedback. 

But I got a few tweets back afterwards. One from South Africa, one from Cornwall and one from Australia. 

So I had worldwide reach. Right? And they were kind enough to say, thanks ever so much for making it. 

But whilst that was a wonderful experience and you get that big reach, you don't anything about impact. 

So actually, when you talk to 50 people in a room and three of them come up afterwards and say, do you know what? 

Thanks for getting it. 

Sofie: 

Yeah. 

James: 

Because this is what's happened to me. And they sort of share their story. That's more powerful, I think, than those big numbers. 

Sofie: 

Yeah, that makes sense. 

James: 

One of the things we haven't talked about yet, Sofie, I don't know whether you want to pull out is that use of the term disabled. 

Sofie: 

Yes. I identify as disabled. I've identified as disabled since I was 17 and had to apply for a disabled bus pass. 

But I understand that that's not necessarily a term you use for yourself. 

James: 

Yeah. It's interesting. I've been thinking about prepping for this chat and sort of reflecting back, and I think in those early years, probably was disabled. 

I did have the bus pass and clearly I couldn't cope and function in the way that I could before. 

But I never really class myself as disabled and I don't know why. 

I don't know whether I felt some sort of stigma and didn't want to go there or whether for my recovery, I thought I needed to feel positive. 

One of the reasons why I didn't apply for any benefits, because in order to get something like PIP, you have to be your very worst self. 

Sofie: 

Yeah. 

James: 

And I've just found it really difficult to do that. 

And maybe it was a mistake. Maybe you need to play the system right and do those things. 

But I didn't. And then I came across, many years later, this idea of the social model of disability. 

Sofie: 

Yeah. 

James: 

And that I am comfortable with. So I have impairments still today. I have some impairments, but they don't disable me. 

It's the environments that I find myself in that disable me. 

Sofie: 

Yeah. 

James: 

And sometimes those environments, things that people can't control, but other times they are. 

You know. So if I'm invited along to a place and it's just too crazy and too hectic, then I need a quiet space to go. 

Maybe you have a similar experience yourself. I know it's very common amongst people with neurodiversity, right? You need that space, you need that room, because the cognitive overload is just too much. 

I remember not very long after my injury, actually my injury was at the end of January, and, in the October of that year, I was asked to go and do a training job in Abu Dhabi. 

Sofie: 

Okay. 

James: 

And the guy phoned me up and said, I'd really, really like you to come and do this job with me. 

But I know obviously you're not very well. Can you come? I said, I need to think about it. And I phoned him out a couple of days later and I said, okay, I'll come, but I can't work for more than an hour without a break. 

And everywhere we work, there has to be a quiet space that I can go and never lie down. 

Sofie: 

Yeah. 

James: 

And he arranged it. And it was just so powerful to be able to do that. It said, you know, we really want you to come and we will make that happen. 

And I only fell asleep in front of the students I was teaching twice in the week that I was over there, so I was quite proud of that. 

So, there was a case where I would have been disabled by that environment. 

Sofie: 

Yeah. 

James: 

But there was a get out, yeah, and I could go somewhere else. And still today, if I've got a load of conferences coming up and I know that I'll struggle at them because they're really busy environments and I will need to find myself a little corner to sneak off and get out of that intense space. 

Sofie: 

Yeah. 

James: 

So, yes, that social model, I think, is really interesting. 

And I think what it means, of course, is that it takes the onus off the individual and onto society. 

And it means that we all have a responsibility to be aware of that stuff. 

Sofie: 

Yes. 

James: 

Yeah, so are we putting people in an environment that will disable them and mean that they can't reach their full potential and they can't deliver the stuff that they're definitely capable of doing? 

So one of the things that I did at John Innes Center when I was there was to helped set up a group called Accessibility Advocates. 

Sofie: 

Yes. 

James: 

And whilst we didn't really predominantly label that as doing something about social disability, absolutely was that it was looking at the environment that we're in and getting people to tell us, you know, what are the things that make it difficult for you? 

What issues do you have around this place? And that might be physical things about steps and doors. It might be light or sound. It might just be the way that meetings are managed and run. 

Are there things that we, as an institution and as individuals within it, can do about that to reduce that disability? 

Can we lower those barriers and make it better for people to get through? 

So we had a bunch of automatic doors fitted, simple physical things. 

But we also did an audit of all the meeting spaces. 

Sofie: 

Wow. 

James: 

So if you want to book a room, it now tells you what that room is like. 

This room will be difficult for people who struggle in loud spaces. 

For example, the lighting in this room is only fluorescent tubes. 

It gives you that sort of information that people can factor in. 

And when you've made a booking, a little red thing will flash up on your screen saying, have you checked accessibility for the people invited to this meeting? 

And I think that's a really powerful step forwards. 

Just as I say to shift that responsibility. It's not about the person with the impairments that needs to worry about this stuff, it's about all the rest of us that need to worry about that stuff and see what we can do to help people out and, you know, we're not going to be able to change everything. 

We're never going to be able to make everything perfect for everybody. 

Right. But we can try, can't we? 

Sofie:

Yeah, 

James:

We can make an effort.

Sofie: 

And have it as standard. Have accessibility considerations as standard rather than as an afterthought. 

Yeah.

James: 

Yeah, and those things help everybody really, don't they? 

You know, if you've got a space that's really noisy, it's not just difficult for people who struggle with loud noises, it's difficult for everybody who needs to go in that space. 

Right. So let's try and change that. Let's try and do something about it. 

Sofie: 

Yes. The one thing my supervisor has been very helpful with is in the lab, we have lots of machines that make lots of noises. 

And I brought this up and he agreed to buy some ear defenders for anyone to use. 

And he moved some of the machines into a different area. 

Yeah.

James:

Yeah. 

Sofie:

It's simple things like that that can make an environment easier for everyone. 

James: 

Yeah. It's not difficult, it's not expensive. And I think often the reason it doesn't just happen is because you don't know what you don't know. 

And if you don't have that difficulty in a particular environment, if you don't have that impairment, how can you know what a problem it is for other people? 

It's easy just to assume that everyone's the same as us, isn't it? 

We all do that all the time. 

Sofie: 

Yeah. 

James: 

And we just have to take the extra step and say, actually, other people perhaps aren't the same as me. 

Maybe other people will struggle this way, and so you just need to go and ask them and- and create a space where people feel safe and comfortable to tell you stuff. 

And that's not always easy because, you know, people have got to admit they're struggling in work. 

That's actually really quite difficult thing to do, isn't it? 

You've really got to be comfortable with your line management and with the people that you're working with in order to have those conversations. 

And creating that space can be challenging, I think. 

Sofie: 

I agree. It can be intimidating to-  to share something that feels potentially that it would make you quite vulnerable. 

James: 

Yeah, yeah, definitely. And I guess that's harder for people like yourself than it is for people with a physical injury. 

Right. You've broken your leg. It's obvious you've broken your leg and you can tell people, well, I can't sit on that chair anymore. 

I'm going to need a different kind of stool or- or even in my case, when you can't really obviously physically see something, but I can point at something. 

Sofie: 

Yeah. 

James: 

I can say I've had a brain injury and the results of that are X, Y and Z. 

And I think that's probably a bit easier to talk about than to say that, you know what, I'm an adult and I've just been diagnosed with autism or some other kind of neurodivergence, and this is what it means. 

Sofie:

Yeah.

James:

I can imagine that conversation must be a bit harder to have. 

Sofie: 

And there's the additional aspect of masking, camouflaging. 

So spending a lot of energy pretending you don't have a problem. 

So the energy spent pretending you can do things the same as everyone else takes away from energy that you can spend on other things. 

And, um, if you've been performing in front of your manager, for example, your supervisor, and then you say, actually, I find it really hard to do X, Y and Z. 

James:

Yeah. 

Sofie:

It's no surprise that often the response is one of disbelief. 

James: 

Yeah, yeah, you've been doing it, you're fine. And you're like, yeah, but when I get home. 

Sofie: 

Yeah. 

James: 

So, Sofie, do you think it's- I'm interviewing you now! Is it better that we ask the question of people rather than we wait for them to speak? 

Because there's also an issue there. You don't want people feel like they're being confronted and kind of interrogated about stuff. 

But I think if you can go to someone and say, is there anything that you're finding difficult that I can help with? 

Is that helpful sort of question to ask people? Is that a way forwards with this thing, or do we just need to wait? 

Sofie: 

From my perspective, the number one most important thing is to create an environment which means people feel welcome to share and know that any sort of disclosure like that would be welcome. 

So I, you know, over the years, I've done several different job applications, most of which I haven't declared that I was disabled, some of which I have. 

I am more likely to disclose if there are indications on the company website or in the emails- 

James: 

Yeah. 

Sofie: 

Inviting me to interview that indicate, we welcome you disclosing; we welcome, you know, if you need reasonable adjustments, just let us know. 

Something like that would make me a lot more welcome to disclose. 

But with my supervisor, it was very much just a case of he was very nice and when I did things wrong, he wasn't mean about it, basically. 

So, you know, you know, it's just figuring out who it's okay to disclose to is one of the challenging things. 

James: 

Yeah. And that's really difficult, isn't it? Sometimes. And like I say, I mean, I agree with you. I think it's better just to kind of create that space. 

But what it does mean is you need to be mindful about doing that. 

Sofie: 

Yeah. 

James: 

And everybody's really busy, so it's not necessarily an easy thing to do. 

But we should try. 

Sofie: 

No, it is one of those things that different people in different spaces will have to do differently. 

So something that I would like to institute as a neurodiversity measure at university for supervisors is as part of the supervisory plan having a sit down conversation about different ways of working and different ways of communicating. 

And it being for everyone, not just those who have been identified as having neurodevelopmental condition or a mental health problem or anything like that, but as standard for everyone to improve working for everyone and to get the best out of everyone. 

For example, if you're having meetings and somebody wants to have the paper to read before the meetings, then you will get more out of them in the meetings. 

You know, stuff like that. Yeah.

James: 

Teah.  I was on an interview panel recently and one of the applicants said,” I'm neurodivergent. Can I have the questions in advance please? Because I'll find it really difficult to cope.” So obviously, yes, of course you can and we'll send everybody the questions in advance. 

And it was so much better. We're gonna do it for everybody now!

Sofie: 

Yeah. 

James: 

Nobody needs to ask. That's what happens. Right, because- because actually everybody does better. Rather than sitting there wondering what they're going to be asked if they know in advance, they can think about it and kind of, you know, go through that sort of system. 

So it takes somebody being brave enough to ask. 

Sofie: 

Yes. 

James: 

To realize actually, yeah, there's better way to do this for everybody. 

Sofie: 

Yes. How has it been talking to your colleagues about traumatic brain injury? 

James: 

Okay. Actually when I. Yeah. When I started my job at the John Innes Centre, I disclosed it in the interview and I wasn't asked and you know, do you need any sort of accommodations or anything like that, disabilities, I just said you should know. And the reason I said it was that I didn't want to be crap at the job. 

Sofie: 

Yeah. 

James: 

And in order to do my best, I said, I am going to have times where I just need space. 

I'm going to have to stop working, go for a walk. Just, you know, if it gets really busy and hectic environment then I- I won't cope. 

Sofie: 

Yeah. 

James: 

So you just need to be aware of that and they went “fine, thanks for telling us.” You know, bada-bing. In the job that I'm doing now, the patient involvement job, I don't need to tell anyone because my boss is the man who drilled a hole in my head. 

Sofie: 

Okay! 

James: 

And the officers, the office is next door to the ward I was on in the hospital. 

Sofie: 

Yeah. 

James: 

So they know all about my history, and we've done sort of bits and pieces over the years in between sort of working together. 

So they know and they kind of get it.

Sofie:

Yeah. 

James:

And most of them- most… A lot of the people I'm working with have or have shared experience and they kind of know it. 

Sofie: 

Yeah. What are the main differences between your previous work in science communication and your current work in patient involvement? 

James: 

There's actually quite a lot of overlap. 

Sofie: 

Yeah. 

James: 

I think when I'm science communication, I'm mostly about dissemination, about talking to people about stuff or demonstrating stuff. 

So certainly the first chunk of my career was all about that. 

It was showing kids demonstrations and, you know, electrocuting gherkins and playing with custard and that science and having those conversations. 

And now I still do bits of that because there is a sort of conversation dissemination strand of the stuff that I do, but more of it is about shared experience. 

So it's about getting people to tell me or to tell the researchers or clinicians that I'm working with their thoughts and their opinions. 

So there's a lot more listening than talking. And I guess if I've had to develop new skills, it's the ability to kind of facilitate those discussions and to encourage people to say what they think. 

We do quite a lot of stuff on Zoom. 

Learning how to chair meetings effectively and learning how to facilitate those conversations. That's been a steep learning curve for me, but- 

Sofie:

Yeah? 

James:

I did it mostly in Covid, actually! 

Sofie: 

Okay. 

James: 

Because ever so much stuff was pushed online. 

Sofie: 

Right! 

James: 

I spent about three months canceling everything that was in my diary, and then the next couple of months thinking about how can we do this in a different space, make it work in a different way, erm, and what skills do I need to learn in order to make that work? 

That was a positive outcome of that awful time for me in learning how to handle that stuff. 

Certainly it makes the stuff that I do now much easier. 

Kind of getting used to that stuff. Yeah. So I think the main difference is that it's less me sort of sharing ideas about stuff with people who don't know anything, it's more about listening to people who know a lot of stuff and helping other people understand what it is that they're saying, yeah. 

Sofie: 

Do you have any recommendations for anyone if they wanted to get into… either science communication or patient involvement? 

James: 

Yeah. If people are interested in public engagement / science communication, you should check out big. big.uk.com and that is a sort of skill sharing network of people who work in those fields. 

And I joined Big in 1996. They have an annual conference. I've been to nearly all of them and it's just such a friendly, sharing environment. 

So definitely check that out if you're interested in it. 

If you are looking for jobs in this area and actually some involvement jobs as well, there's an online newsletter called SciCommer, you can probably put links to these under your podcast. 

Sofie:

Yeah! 

James:

That's great. There's loads of stuff in there. Training courses and job vacancies and stuff. It's a really, really good newsletter and that comes out every Tuesday. 

There's a free version and a subscribed version, but hey, check them out. Their good. 

If you're really interested in this sort of patient involvement stuff. 

People that I've met who work in it have come through different fields. 

So, some of them were researchers who have taken a kind of sideways step, some of them are people like myself who've come with more through a sort of engagement, communication route into it, and I think some are even our clinicians and they start off perhaps doing a little bit of research as part of their clinical role and then through that they have to work with patients. 

That the PPI field is growing. It's quite big, as I said earlier on, that I didn't think I'd met anybody in the early years of doing PPI. 

But there's a lot of people around now and there's a couple of sort of networks of those groups that come together periodically, kind of talk about experiences and think about the difficulties in doing stuff. 

But, um, certainly I find it enormously rewarding. Yeah, I've never really sort of had a proper job until the last couple of years. 

Sofie:

Oh, wow. 

James:

Doing the science communication stuff. You sort of flip from place to place and you don't get paid very much. 

But I've always just found it fascinating. 

Sofie: 

Yeah. 

James: 

And… And I guess probably since 2017, I suppose I started to slip more into conventional here's an actual job kind of thing! 

And I'm quite old, so that's probably a good thing. 

But there's certainly. There are plenty of people out there. You know, there are freelancers and people working in museums and galleries and science centers who are doing this sort of science communication stuff and increasingly working for universities. 

So in widening participation teams or in outreach teams, erm, there are lots of science communication engagement roles now in those sorts of spaces. 

Sofie: 

What are your hopes for the future? 

James: 

I guess my hopes for the future… In terms of career to carry on doing what I'm just really starting doing because I find it really rewarding and allied to that. 

I would like to see improvements for people who have brain injuries. 

Yeah, traumatic like mine, but all kinds through the development of new technologies. 

So I'm trying to do a piece of work at the moment where we're reaching out to all different stakeholder groups. 

What are the needs? Where are the gaps in care and treatment and recovery? 

Everything from prevention of injury to long term rehabilitation. 

And if we can identify those gaps, can we find new ways of filling those gaps? 

Are there new technologies out there that we can do that with? 

And that would be an amazing outcome, to really improve the pathway. 

Many people don't get the rehabilitation that they need. 

Many people don't get the, really, kind of care and support they need and that includes the families of people who've had brain injuries as well as those survivors themselves. 

So it'd be fantastic to see a change in that space. 

Sofie: 

And where can people find you if they want to hear more from you? 

James: 

They can find me on the LinkedIn and the BlueSky. Look for @ThePiercy. I have an unusual surname so that's better. But also I'm running a podcast series and you can find that on Spotify if you look for Talking Trauma through the HealthTech Research center in brain and spine injury. 

Sofie: 

And what sort of things would they hear on that podcast? 

James: 

On there I'm talking to patients and carers. I'm also talking to researchers and clinicians about the work that the HealthTech Research Centre is doing in developing these new technologies. 

Sofie: 

That's great. Thank you very much. Thanks for speaking with me today. 

James: 

It's been a pleasure, Sofie. 

Sofie - Outro: 

Again, I hope you enjoyed that as much as I did. If you're interested in learning more about brain injury and research into new technologies, go and have a listen to Talking Trauma. 

If you want to find James on social media, you can find him on bluesky @ThePiercy dot bluesky dot social or at LinkedIn slash ThePiercy

ThePC links will be in the description. If you want to follow me on social media, you can find me@disabledscientists.com on bluesky and if you want to get in contact, you can email podcast at disabledscientists.com 

Thanks for listening. 

Bye!

[Outro Music]