On the tip of my tongue - S2 E9: Tamsin Keyes
Tamsin: [00:00:00] Good afternoon. My name is Tamsin Keyes and I am the Publications and Research Manager at HEADWAY, the Brain Injury Association. We are a UK charity that support people affected by all types of acquired brain injury, supporting both people with first hand experience of sustaining a brain injury, as well as their families and loved ones.
Jon: Thank you, Tamsin for coming on the podcast. It's great to have you here. just, talk a little bit more about, what brain injury is and how it affects people.
Tamsin: Of course, so let's start off with some basics about what a brain injury is. It's basically any injury that has been sustained to the brain, so that can either be through an accident or an illness or some sort of medical complication. When we're talking about injuries through accidents where both the head and the brain have been injured, for example after a road traffic collision or a fall, or even something minor like a sporting accident where players have [00:01:00] collided into one another with quite a strong force.
These types of brain injuries are known as traumatic brain injury. So in these there's been a trauma to the head and that's caused the brain to get injured as well. And then there's all sorts of medical complications and illnesses that can affect the brain. So things like strokes which I know you've talked about quite a bit already Jonathan on this podcast and burst brain aneurysms where there's been a disruption of blood flow in the brain.
Or sometimes we talk about space occupying lesions. So these are things like brain tumors or abscesses. Any conditions that cause pressure on the brain can also damage it. So things like hydrocephalus, this is when there's been a buildup of something called cerebrospinal fluid in the brain, or infections that can cause swelling such as meningitis or encephalitis. And anything where the brain's oxygen supply is affected can also cause damage. We call these anoxic brain injuries where there's been a disruption to that oxygen supply, for example through things like strangulation or near [00:02:00] drowning incidents. So there's lots of ways that the brain can be injured. The key definition of an acquired brain injury is that it's an injury sustained since birth.
So it's where someone is born without a brain injury, but they do go on to acquire one at some point in their lives. , it's also not related to genetics like we see through many developmental conditions. And finally, it doesn't include degenerative conditions, which are progressive, such as the dementias, multiple sclerosis, motor neuron disease, and such.
Jon: Right, it's well done. Right. There's a lot to unpack here. , obviously because it's, we talk about aphasia, that's partly the number of people that I talk to and I know who have aphasia, have had a brain injury rather than a stroke. Which is why really we're talking today.
So, one of the things that, it's come to me while, whilst doing the podcast, is there are a lot of people that I speak to, of working age. [00:03:00] People in their twenties, thirties and forties, and, it struck me that what do we, what do they do?
Jon: And it's the same for people with head injuries as well, who obviously people, as you know, can recover from head injuries, can't they? So what do they do with the rest of their lives? And this is really what I, why we're talking today. So in your, your experience, so what people who've had a head injury, they've got over it in one way or the other and is able to go to work would like to go back to work.
What problems do they, do they encounter do you think?
Tamsin: It's a really good question and a very common experience for a lot of people as well that for many people when they go through that experience of first sustaining the injury, being treated in hospital, undergoing possibly some rehabilitation afterwards. Many people are really keen to go back to, I guess, a sense of normality after that injury.
They want to go back to returning to work, returning to [00:04:00] socializing with colleagues and regaining that sense of their old life. back. But a brain injury, as we know, any type can cause a huge range of issues and challenges often on a long term basis as well. So it's not that somebody goes through a rehab and they recover and they're back to normal.
People can have challenges for months, even years, and sometimes even lifelong complications. Specifically within the workplace. The main thing for many people after brain injury is struggling to do the same tasks that they could do before the injury because of the effects they're now experiencing.
So they might find it quite difficult to do things like sticking to deadlines or completing jobs on time. Many people have to multitask as part of their job if there's lots of things to do or they might simply not feel confident enough or safe enough to complete certain types of jobs that they did before.
There's so many different types of injuries and as I've already explained and multiple different types of effects that people can experience and any of those can affect the ability to complete lots of different types of [00:05:00] roles and responsibilities regardless of what the actual job is. Another challenge that people tend to face that we hear quite often is that because you can't see the brain, for many people, it can be called a hidden disability.
It's not always obvious when somebody's had one because obviously you can't see the brain. And there's often that assumption made that when someone is discharged from hospital, or they come back home, or they return to work that they're better again and back to their old selves and for many people it's actually when they go back to work or they leave hospital that the real challenges begin in life, especially for people when they come back to the workplace.
But again, because brain injury is often non visible, colleagues or managers, other fellow employees, they often fail to recognize or understand the challenges that that person might be experiencing within work. And generally what we tend to find is that there is this lack of understanding about brain injury and what the effects and the impact can be.
And [00:06:00] that means that within the workplace, very often people don't get the type of support and understanding that they actually need to thrive. There's also kind of logistical challenges for many people. So they might. actually find getting to work in the first place to be a challenge. And I don't just mean that in the, in the context of physical effects of brain injury, but there's many different cognitive effects as well.
So things like again, sticking to deadlines or being able to do things in the correct order or remembering to even get to somewhere at a certain time. And there might also be challenges within the work environment itself, especially for survivors that might be quite sensitive to bright lights, loud noises, overstimulation.
Regardless of where somebody works, there's often a lot of stuff going on in the background, lots of other people working, lots of noise, lots of chatter, and these kinds of things can be quite overwhelming for many people. So there's lots of different ways that people can struggle with returning to work after brain injury and when you look at the research in this particular area it finds that only about [00:07:00] 40 percent of people after a brain injury can successfully return after two years, so a very common challenge indeed for many many people.
Jon: If you're going back to work, to your original job, that's, that's one thing. And obviously maybe you're, if you're lucky, your, employer will compensate for you, for your problems. What happens if you say, you try to go back to work in a new job.
Have you any experience of how people get with being recruited for something? Is that a problem? I imagine that's probably a, as much a problem if not more than someone going back to work to a job that they'd already been doing.
Tamsin: Absolutely. Going back into a job that you're to at least to a degree maybe familiar with, you're familiar with the people, the processes, some things you might need to change, as you said, with adaptations being employed, but that in some ways might be more comfortable territory for some brain injury survivors, as opposed to looking for that new role. I think [00:08:00] it's very much at that stage a matter of finding something that suits the survivor's new needs and requirements, something that fits within their, their skill sets something that can allow them to continue doing that job with the effects they experience. Ideally, any survivor who wants to go back to work and is struggling to find a new job should be supported by a professional called a vocational rehabilitation team.
These are professionals that specifically support people with returning to work after an illness or an injury, or an occupational therapist. So these are professionals that can support people with returning to sort of regular daily activities. Both of these types of professionals might be accessible through rehabilitation that the person's already had But people can also go to their gp to request referrals if there are services in the area Or there's always private options available for people as well. There's also within job centers Professionals called disability employment advisors So these are [00:09:00] specific professionals that can work with anybody with a disability to identify A suitable job for them something that feel fits again with that skill set and for people that are really struggling to go back to full time work or finding an opportunity that suits them immediately volunteering is always a great opportunity to kind of do a bit of work in a less committed and less professional way.
Something that's a bit more flexible, something that can accommodate their needs, but it is a lovely stepping stone to then get getting back into paid employment.
Jon: Obviously, being a, a volunteer I is a good way of getting back into, to work and, and lots of people actually get their job regardless of whether they had head injuries or not, have got into work via volunteering, haven't they?
Tamsin: And my personal experience is that I've been working at Headway now for coming on to 11 years. I started my journey at Headway through volunteering as well. And I know that many people, as you said, regardless of whether they've had a brain injury or not we have a really great [00:10:00] volunteering system across the whole of our network at Headway, which I can talk.
bit about later. We do support many brain injury survivors with those volunteering opportunities as well.
Jon: Going back to the employment side of things in your experience are employers more, likely to take on people with some sort of, disability? Do you think the world is, is moving on from, what it used to be maybe 20 years ago or whatever?
Tamsin: I think certainly more recognition for disabilities in general from where we were a couple of years ago. There's also more emphasis on things like mental health. So again, we're talking about those invisible disabilities that you can't see somebody's affected, but there is more of a recognition now that people, you know, they might present, typically, but they might have all sorts of challenges going on cognitively, mentally, psychologically.
So certainly there is a greater awareness of that, but I do think there's still quite a way to go with understanding about brain injury. It's still a condition that [00:11:00] not many people particularly understand unless they have that firsthand experience. Which unfortunately is, is usually the way people tend to learn about it and especially learning about all of the non visible effects and impacts of the injury.
There's certainly employers that have signed up to a disability, positive scheme where employers can register for this. They get the accreditation and then they can use that to show that they are more positive about employing people with a disability.
So that's quite a positive initiative that's been established. But it's also important for people with disabilities. that personal experience of things like brain injury to know what their legal rights are as well within the workplace. Under the framework of the Equality Act people with disabilities have got a legal right to ask for adaptations to be considered within the workplace.
And so it becomes the employer's responsibility, their legal duty, to consider those kinds of adaptations. So I think it can be quite empowering for people to know that they [00:12:00] do have that legal right within the workplace and they can ask for those sorts of things to be considered as well.
Jon: The problem I see, and I've talked to somebody else about this particular subject is that when you get down to smaller businesses, say, under 20 people, however, the company wants to be. Inclusive . It's not practical in a bigger company you can spread people out but I think in a small company or smaller companies it's difficult isn't it for them to, to be, to be inclusive.
Tamsin: It's very much a matter of sitting down with each individual employee that has those those requirements and talking to them about what Sometimes it might not be a massive change. It might be something like be more flexible with their working hours or, you know, offering part time hours instead of full time or just changing some of their responsibilities to make it more manageable.
When we're talking about these kinds of adaptations that employers have got that legal duty to [00:13:00] make, we're not just talking about providing expensive equipment or installing, know ramps or, you know, physical adaptations, we are talking about things like flexible working hours or checking in a bit more regularly to make sure that they're staying on track or, you know, having some sort of a system where that survivor knows who to talk to if they are struggling.
It can be simple things like that, that hopefully can be accommodated in any workplace setting, whether that's large or small. But again, it's, it's about people Knowing that they have the right to ask for that under the framework of the Equality Act, and also then just being willing to have that open and honest conversation and discussion with their, with their employer.
People with brain injuries, unless there is a safety consideration, they're not under any legal obligation to disclose their brain injury, but it often really helps to get that conversation going with an employer to say, actually, I'm really struggling with something like fatigue in the mornings. Can I start work that little bit later?
And maybe that's all they need just to make that roll out. All a bit more suitable [00:14:00] for them.
That if people are having real difficulties within that workplace environment, and they're not having those kinds of things addressed or listened to, there are organizations like HR teams, if there is an HR team within the workplace that they can talk to.
Externally, there is an organization called ACAS, so they can provide that kind of workplace related disputes or questions, and they can give free and impartial advice on those sorts of matters as well. So there's usually some sort of agency that can give some sort of advice within those sorts of situations.
And of course we have our helpline from Headway as well. But again, I can talk more about that later.
Jon: Well, perhaps that's a good opportunity for you to talk about that, because obviously you've got a lot of information. I'll take some of those links that you give, if you can give them to me, I can put those into the podcast because it would be really helpful.
So HEADWAY obviously is a relatively large organisation when it comes to, for this particular, for [00:15:00] one specific problem really we're talking about here. So what sort of things does HEADWAY do for people that have brain injuries
Tamsin: We are. A relatively small charity, I will say, but the impact and the work that we do is quite large. We cover so many different aspects of life with a brain injury, whether that's returning to work, as we've talked about, or supporting people with their emotions, their feelings, relationships sometimes, anything that people have those kinds of questions and just need that emotional support with, we can provide because we just recognize that a brain injury can affect every single aspect of a person's life.
So we are here to support people regardless of what they're experiencing. One of our core services to deliver that is through our nurse led helpline. So it's a free phone helpline that can offer information and guidance to anyone with a question about living with brain injury. So they can take questions about things like returning to work, or even if somebody just wants to talk about their experiences going through that or their feelings or, you know, find out where they can get that kind of additional [00:16:00] support.
And they'll take questions on, on anything really, whether that's welfare benefits or, you know, returning to driving, all of these kinds of practical aspects of life, things like relationships. If they're struggling with, you know, maybe a spouse has had a brain injury they can give some advice and support with that.
And even if somebody's just feeling down one day and they just want to have a chat with somebody, the helpline's there to support them with that too. We also have lots of information on living with brain injury available in print from our publications on this topic. And all of our publications are free to download directly from our website.
We also have some of them available in print copies for people that might want to have handy printed resource. Another one of our biggest services is our network of independent charities and volunteer led branches. So these are local services and we have about 120 of these across the whole of the UK.
The exact services that each of them offer does vary depending on local resource availability. But people can check what their local [00:17:00] group has on offer from our website. So some of them might offer more substantial services, like they might literally support somebody facilitating them with returning to work.
But what all of them do offer is that chance to connect with others that have been affected by a brain injury and to share their experiences. And there is so much value in that kind of peer support after a brain injury. What I will say as well is that both the helpline and our local services are there to support people both with lived experience but also their carers, family members, friends, partners.
We also have quite a lot of information for professionals as well that want to develop their understanding of brain injury. So we offer training sessions, we offer webinars. Anybody with that kind of inquiry about brain injury, we We can support them in the best way that we can. And every May we run a campaign week called Action for Brain Injury Week.
And this is where we raise awareness of an issue that's of particular relevance and importance to the brain injury community. I mentioned that because this year's ABI week will focus on the [00:18:00] fluctuating nature of brain injury, how the effects can sometimes be more problematic on some days than others, and sometimes their presence and other times they might not be.
And we'll be a raising awareness of this so that groups such as friends and employers can better understand why it is that someone with a brain injury might be completely different on one day compared to the next. For example, if somebody's out for dinner with their friends and they're having a good time, but the next morning they're really struggling and they just don't want to speak to anyone until they've had a proper chance to rest.
So we'll be launching a few bits and bobs for ABI week in the coming few weeks, including a survey to ask about people's experiences of the fluctuating effects of brain injury. And part of this will be to identify ways to share some of these findings with employers so that we can give them that better understanding of brain injury and how they can better support somebody with a return to work.
Jon: That's fantastic stuff. As you know, aphasia can be part of brain injury. And some of the things that you talk about are being done in the [00:19:00] aphasia Community. I think drop-in groups are one of the, the biggest pluses that you get, and I'm sure it's the same with you, is if you can get people together and talk about their problems together.
'cause you've all got the same problem. You get some good discussions going with people. Talking to people in the aphasia community, that's the, the biggest takeaway for them is to go and talk some other people you know, locally, and I think it's back to the local groups, isn't it?
And it will change depending on where you live, you'll get slightly different. Experiences, but the, the point is that you get to talk to people and you, and also you can let off really about the problems that you're having. So that's, and you'll find out that everybody's got the same problem as you anyway, or similar to you
Tamsin: it really is. And there's so much value in having that kind of support from people that understand the real nuances of living with these kinds of conditions. You know, there's, there's a lot of talk about [00:20:00] kind of the clinical impact of these conditions, you know, some of the physical effects that people experience, but there's so much more that goes into it.
It's things like, the trauma of being in hospital and going through that process. It's the change in your personal identity. It's the change in how you feel in terms of your confidence and your assertiveness. All of these are things that are more peripheral issues, but they are so at the heart of people's experiences when they've been through something like a brain injury.
Identity is one of the biggest ones because people find that their identities change. And that's such. difficult thing for other people to understand. So it's all of these kinds of more complicated topics, but it's giving that opportunity and that space to talk about them with others that completely get it.
They completely understand what that feels like. It's such a nonjudgmental space when everybody's coming at it from the same angle, whereas many people with a brain injury, they. you know, with the best will in the world, their friends don't understand what they've been through, so they might say things that seem a little bit insensitive, you know, [00:21:00] things like, if somebody does have memory challenges after a brain injury and they can't remember information, friends might say things like, oh, I, you know, I've got a terrible memory too.
It's something we hear so often, but that can be so frustrating for people when they know it's not the same thing. So it's having that kind of environment where they can have those conversations without the judgment, without the kind of the stigma associated with it. There is so much to be said for that peer support.
Jon: Yeah, it's a bit like aphasia. People say, well, I forget things all the time. And you say, well, no, it's not like that at all, actually.
Tamsin: Yes. Yeah. And the other thing with aphasia is, again, it's, it's that lack of understanding that people, if you don't have something like a stutter, or, you know, you don't have something where physically your, your conversational styles affected, people just don't understand that there's a whole cognitive component of communication.
There is so much that goes on in the background in the brain with thinking of what word you need, retrieving that word, articulating it, using it in the right context. But people very often don't know that. So they don't. [00:22:00] See that somebody can have something like aphasia.
Jon: It's hard work. I mean, having a conversation to me, if I have a conversation with somebody, it's quite hard work because I have to process it at the same time. And obviously I'm thinking slightly ahead thinking, do I know the words that I'm gonna say?
And it must be the same with people with brain injuries as well. It's this, it's it also, it's all to do with your cognitive side of you, isn't it?
Tamsin: That's right. It's, it's quite cognitively demanding to, to have a conversation. There's so, again, there's so many background things that go into that, and whether that's a cognitive communication aspect, or whether there's other things going on. So memory and, you know, knowing the right social cues, the right social context to say different things.
There's a lot that goes on in the background with communication. And it's just One of the things that we try and propagate as a message to others to help is to just [00:23:00] give people with brain injury that little bit of extra time to think about things, to formulate their responses, to process the information recognize that sometimes conversations might be that little bit slower, they might need a bit more time, they might need things to be repeated, but all of these can make such a difference to, to having a conversation with somebody affected by brain injury.
Jon: Well, that's a lot of information,
Tamsin: Hopefully helpful information for
Jon: it will be, it will be. So, is there anything you want to, you know, in, in wrapping up, is there anything you want to say, what, about you and headway
Tamsin: I think I'll just finish off by saying if people are affected by any type of acquired brain injury, so that does include traumatic, it includes stroke, tumours, meningitis, anything where the brain has been injured, they can visit our website to find out more. I've only touched the surface of our services.
We have so many more things that that can be there to support people like online communities. If people do feel more comfortable with talking online [00:24:00] with others they're very safe and secure spaces. We have a network of shops that again, we talked a bit about volunteering. If people were interested, they can always contact them, their local shop.
We have a system called the approved provider scheme, which is where we UK to ensure that they do meet a certain standard of brain injury care. So lots and lots of different services that we offer. I would just ask that people have a look on our website, familiarize themselves with what kind of support we can offer.
And hopefully if they are struggling with any aspect of brain injury, we can be there to support them. And our website I'll mention is www. headway. org. uk.
Jon: Well, that's fantastic. Thank you very much. That's a lot of information as I say, but it, it, it will help people with aphasia as well. Obviously you have not had a brain injury, you've had other things, but I mean, the, the stories are very similar, aren't they?
Tamsin: Wonderful. Well, it's been my pleasure. Thank you so much for this invitation and [00:25:00] opportunity.
Jon: no problem and it's very kind of you to say so and good to meet you.
Tamsin: You as well. You as well. Keep in touch,
Jonathan. And, um, I look forward to hearing when the
Jon: Okay,
Tamsin: All right.
Jon: Bye bye. Bye bye. Bye bye.
