International Aphasia Awareness Campaign with Claire Bennington

International Aphasia Awareness Campaign with Claire Bennington

In this episode of 'Tip of My Tongue,' hosts Rob Edwards and Jonathan Hirons speak with Claire Bennington, chairperson of the Australian Aphasia Association and an experienced speech and language therapist. Claire shares her extensive experience working with adults with Aphasia, details her involvement with the Australian Aphasia Association since 2018, and discusses her PhD project, which focuses on co-designing a unified international Aphasia awareness campaign. The conversation covers the current fundraising initiatives, the challenges of raising awareness for Aphasia, and the ways listeners can get involved. Claire also highlights the importance of global collaboration and multi-language accessibility for the campaign materials aiming to make a significant impact on Aphasia awareness worldwide.

00:00 Introduction to the Podcast and Guest
01:24 Understanding Aphasia
02:01 Claire Bennington's Background and Role
03:47 Challenges and Activities of the Australian Aphasia Association
06:19 Fundraising Efforts and Campaigns
09:03 Global Aphasia Awareness Campaign
17:29 Conclusion and How to Get Involved

To donate to Claire's Just Giving page, click here:

https://www.justgiving.com/campaign/qarc-uq-aphasia-awareness

To contact Claire about the Match the Momentum: Unite for Aphasia Awareness campaign

Claire Bennington - c.bennington@student.uq.edu.au>

Transcript

On the tip of my tongue - S3 E4 : Claire Bennington

Narrator: [00:00:00] Tip of my tongue, the podcast, exploring life language, and the lived experiences of those with Aphasia. In today's episode, I'm joined by Claire Bennington, chairperson of the Australian Aphasia Association, and a UK trained speech and language therapist. Claire brings decades of expertise working with adults facing Aphasia and difficulties with swallowing across both the UK and Australia.

Her leadership with the Australian Aphasia Association since thousand 18 and her exciting PhD project, co-designing a unified international Aphasia awareness campaign. We'll also hear about the association's activities and their latest just giving campaign, supporting global awareness. Stay with us as we dive into Claire's story, the [00:01:00] impact of Aphasia worldwide, and how you can get involved in this vital cause. 

@Rob: Hi, and welcome everybody, and we hope you enjoy this podcast called On the Tip of My Tongue. Now I'm Rob Edwards. And I'm Jonathan Hirons. And this podcast is a follow up to a film which Jonathan made about Aphasia. So what is Aphasia? Well, it's a condition caused by some kind of injury to the brain, which is often could be a stroke or could be just falling off a bike and it affects your a bit of.

To use language in all its forms, speaking, writing, reading, sending texts, whatever. 350,000 people in the UK suffer from a debilitating condition called Aphasia. Fewer than half this number suffer from Parkinson's, and yet most people have heard of Parkinson's. Whilst almost nobody has heard of [00:02:00] Aphasia.

audioJonathanHirons21681506323: So welcome Claire. Thanks for coming on , on the tip of My Tongue podcast. It's great to have you with us. Before we sort of get into the, the meat of things, perhaps you could tell me a bit about about yourself.

audioClaireBennington11681506323: Well, thank you for having me, Jonathan. It's, it's really great to be here. So I'm Claire Bennington. I'm a UK trained speech and language. Therapist, but I've been in Australia since the beginning of 2006, and that means I've got over 30 years experience working with adults with acquired communication and swallowing problems in a range of clinical settings in both the UK and Australia.

Currently, I'm the chairperson of the Australian Aphasia Association. And I recently completed my PhD through the University of Queensland, which was all about Aphasia [00:03:00] awareness and had the ultimate aim of co-designing a unified international Aphasia awareness campaign. 

audioJonathanHirons21681506323: So I mean, sounds, you've got a lot lost on your plate are you are you an academic now or do you, do you work with patient as well?

audioClaireBennington11681506323: Well I didn't return to my clinical job last year after I submitted my thesis. I had taken. Some long service leave to finish writing that. And that was really because I wanted to see the work that I'd been doing in my PhD through. So that was a difficult decision and I didn't really know what the future was going to hold.

But now I'm, I'm trying to follow through with the PhD work.

audioJonathanHirons21681506323: So what about your involvement with the the Aphasia Association in Australia? What's your, what's your role? So you are, you are a chair person, aren't you?

audioClaireBennington11681506323: I am the [00:04:00] chairperson. Currently I've had a few roles in my time with the aaa. I first joined the board back in 2018. I was the general board member for a while, and then the secretary for about a year, and then the deputy chair for three years. I've also been involved in quite a few committees for the aa a fundraising committee, a grant writing committee, and the 2020, and then 2021 conference committee.

But I first, I first got it, got involved with them when I very first came to Australia. I looked them up because I needed to know. What services were available to the people with Aphasia I was working with here in Australia. I didn't have that information at my fingertips being new to the country, and so it was a AAA that I turned to for that information.[00:05:00] 

audioJonathanHirons21681506323: Right. And, and how how many people actually have Aphasia in, in Australia?

audioClaireBennington11681506323: In Australia, we estimate about 140,000 people with Aphasia. Yes.

audioJonathanHirons21681506323: And obviously all, it's a big country that Australia. So how, how does that work as, as an association? How do you cope with that? A, a, a distance

audioClaireBennington11681506323: . The Australian Aphasia Association is the National Peak Body for people living with Aphasia in Australia, but there are some state associations as well that can provide more local support. The Australian Aphasia Association is run entirely by volunteers. And so our board are spread across many states.

So when we have our board meetings, they're all on Zoom. We have people from Western Australia, people in Victoria, people in New South Wales, in the A [00:06:00] CT in Queensland. So we are very spread. We don't see each other face to face that often, but when we do, it's pretty special. And so we've got one of our national conferences coming up later this year and so that would be a great opportunity for us all to get together.

audioJonathanHirons21681506323: And what about the fundraising? Obviously that's quite difficult done at distance, I suppose, or is it, I know maybe, maybe it's easier in some ways because you're used to you know, used to having Zoom . So how, how does the fundraising work for you?

audioClaireBennington11681506323: Fundraising is a challenge. It is a challenge. We have different ways of raising income. Some of that is through memberships with the association. Some of it is through applying for grants for specific projects. For example, Aphasia [00:07:00] camps. Some of it is through our online shop, so selling a few resources.

But what we, our main and most successful fundraising has been through events and we have a series of long lunches to raise awareness of Aphasia and also raise some funds. So we've had a few over the years. Up in Queensland. But this year is the Australian Aphasia Association's 25th anniversary.

And so we are going to cast annet wider and have events in Melbourne and in Sydney, possibly even in Canberra, as well as Brisbane this year. So that's exciting.

audioJonathanHirons21681506323: It's hard work, isn't it? Getting, getting people interested in what's a difficult subject, isn't it? . And in the UK we have the same problem is, is getting people connected with what we are trying [00:08:00] to do and actually understanding what's going on. I'm sure everybody says this. It's the hardest thing to get people to understand what Aphasia actually is.

audioClaireBennington11681506323: And trying to, trying to reach that broader audience as well, beyond the people who are, who are already involved and who are, are trying to spread the word.

audioJonathanHirons21681506323: Because it's a bubble, isn't it? In some ways you've got, as you say, there are, people have got it. People who, you know, they're. People are, you know family members, et cetera, et cetera, and people like yourselves doing the, doing the hard work at the front. But it's, it's getting it out to the bigger, the wider world is, is the is the big challenge, isn't it,

Speaker 5: Loving the podcast. Subscribe for more episodes and support the journey. Your donations help keep the show thriving. Please go to tip of my tongue film.com. Thank you for being part of our community.

audioJonathanHirons21681506323: So we are [00:09:00] moving on, I suppose, really about, we're talking about fundraising. Now you've got a, you've got a campaign going at the moment, so tell me about that.

audioClaireBennington11681506323: Yes, we do. We have a, a just giving campaign which we launched in early August, and what we're trying to do with this campaign is match. Some very generous funding that the Tavistock Trust for Aphasia have made towards implementing a global Aphasia awareness campaign that we co-designed in my PhD. So we're, we are trying to match their contribution dollar for dollar dollar.

audioJonathanHirons21681506323: Right. So, and how does that actually work from your side then? Obviously I'll put all the information of your of your campaign. On the on the podcast, how are you raising the money on your side?

Have you got donors waiting to put money in? Or how [00:10:00] does it work?

audioClaireBennington11681506323: We've had a number of donations over the last month. But you know, it, it takes time and I think it takes time. To reach people, especially when we're looking at an international audience. So we have had communications go out through email and various social media, channels but they need to be reposted and we need to sort of keep that momentum going and that becomes.

More of a challenge if you're needing to do that in different languages as well.

audioJonathanHirons21681506323: So you've got people, d parts of the world doing what you are doing in their, country, . Is that the idea?

audioClaireBennington11681506323: Yes. That that's what we're aiming for, but we do really need people to, to drive it in other countries as well. So we have got people who have put the word out [00:11:00] there. But as I say, it possibly needs some help to keep the momentum going. with this, this funding that we're trying to raise, is use it to develop the campaign assets, which will be a suite of downloadable digital campaign materials. So that includes.

Animated videos and infographics, but we want them to be in as many languages as possible because what we're wanting to do is try to be launching the same message about Aphasia at the same time everywhere that we can. the campaign that that we. designed is specifically targeting the general public.

So there were many audiences that we could have pitched it [00:12:00] at, but this is a, a public campaign because they're often the hardest audience to reach.

audioJonathanHirons21681506323: Because there's so many other things going on at the same time. And it's, that's the hardest job of all really, to get the, the public to understand what's going on.

I'm sure you'll get it because what the idea is great, I think, in my opinion. And the more people understand what, what's going on with Aphasia, the better. And well, as I say, we're, we're all trying to do our bit here, but yours, you've, you've put it all, what you've managed to do is to put it all together into one sort of place cohesively.

audioClaireBennington11681506323: It's very 

audioJonathanHirons21681506323: somewhere with Aphasia, isn't it?

If it's a small word. I can't, I never remember it.. Because you put things together in one place, , I think that's the thing that, that will work. Because , as you say, getting the message out for everybody at the same time.

And language is [00:13:00] another problem. I go, just going back on what you were just saying, language. , We're all, obviously we, we work in English, but there, there are other languages, not the, and with, with people with Aphasia in 

audioClaireBennington11681506323: That's right. And I 

think, lot do happen in English. You know, and co-design team had people from non-English speaking countries such as Switzerland and Denmark, and we had people from Cyprus and India involved in the co-design. And, you know, they talked about how it's often difficult for them to adapt English resources.

their campaigns. reach as many people as we possibly can with this campaign. And so once we have the campaign materials the plan put the awareness campaign into action does mean that we need [00:14:00] to. Translate those campaign materials into as many languages we as we can.

And we want to have campaign champions in different countries to help distribute those materials. But also give us some feedback as to far campaign has reached, and we will want to. Have a launch date and a lead up to that launch so that everybody knows it, it's happening and can actually be, be ready get the message out. 

audioJonathanHirons21681506323: Are you thinking about a webpage, or a website for specifically for the. For the resources that you're talking about, 

audioClaireBennington11681506323: the we've had organizations agree to partner with us on this project, which is really important. And the collaboration of Aphasia trial is, is one of those organizations who have offered to help with [00:15:00] translating the campaign materials and helping us to identify campaign champions. Also offered to The campaign materials on their website so that they're in one central place,

audioJonathanHirons21681506323: I've done a very similar thing. It has nothing to do with Aphasia, but working with people in different languages we, and it's that obviously very hard, but that's exactly how we did it. We had people locally doing the translation and they, they used to do the pages as well, the website pages in their language, so that.

You could pick on a language and then you get that page rather than the English page, you get the, the German page or whatever it might be. And that worked quite well actually. And it's, some of these projects are still going and I did them back. Nearly 10 years ago, and they're still running because you, the websites are there forever

So the coordination is obviously quite key there. Presumably you are using, you're using the, something like [00:16:00] Zoom or whatever to get people together in a, on a regular basis.

audioClaireBennington11681506323: a just giving campaign came about quite quickly. There wasn't much lead up to identify people in other countries . but a number of people have translated campaign summary and different languages that it can be more broadly. And that's been a, a big help. it's quite difficult for me know just how often those posts might be going out. 

audioJonathanHirons21681506323: It's hard work. I know, I, I realize that. But, but obviously everything comes back to you, that whatever happens in what, whichever country, the campaign returns to you

audioClaireBennington11681506323: Obviously we can, we can see and we, if people give their details, we have an idea where they're donating from. Some people do. To put a message 

Is helpful. it really, and not just donate, but [00:17:00] perhaps, as I say, keep, keep it and keep, so keep sharing the links, keep codes and. Running some fundraising events to help generate some funds.

audioJonathanHirons21681506323: Maybe that's the thing when you can, but you can actually get people in front of you. It's a lot easier to tell people what your. What you are aiming for, if you can do it face to face or at least in a, an event. 

audioClaireBennington11681506323: Yeah.

audioJonathanHirons21681506323: So obviously this must be quite rewarding for you because you're you're put your normal job on hold to do this, , that's quite a lot to, to for someone to do. But how do you feel about that? 

audioClaireBennington11681506323: I, I feel strongly about I am. I obviously have a passion to, to try to do something about Aphasia awareness. It frustrated me throughout my clinical career and it's frustrated me in my time on the [00:18:00] AAA board where, you know, raising awareness is one of. You know, our core purposes, but it can be difficult to do and it requires time and effort and resources, all of which are in short supply for an organization that's run entirely by volunteers.

this is something feel strongly about when I first saw the PhD opportunity. I knew immediately that I wanted to be involved, not really because I wanted the PhD, but because I wanted to try to do something about Aphasia awareness. So now that we've got, we've completed the research studies, I almost feel like the work is just beginning.

I, I do want see that through.

audioJonathanHirons21681506323: So is there any time limit to the actual campaign, it sounds to me like it's, it's [00:19:00] something that can't happen in. A month or whatever because you, because of the, the number of people you've got involved in different countries, et cetera. Have you got some timescales in mind ?

audioClaireBennington11681506323: Trusts have not put. Takes us to raise these funds and they suggest touching base again next June. this work. On sooner rather than later. So we, we'd like to try to raise the funds before then, but we do realize that it's going to take time.

would imagine that to, to take stock again at the end of this year. We have quite a few events coming up towards the end of the year, which we're hoping will. Help with this campaign. it'd be interesting just where we're at by the end of December. I think maybe have a bit of a at that point.

audioJonathanHirons21681506323: Yeah. [00:20:00] Done basically six months, is that 

audioClaireBennington11681506323: Well, yes. We launched it August, so. so not 

audioJonathanHirons21681506323: Oh, August. I'm 

audioClaireBennington11681506323: but you know, I think 

audioJonathanHirons21681506323: No, not quite 

audioClaireBennington11681506323: a, good time to just see how it's going.

audioJonathanHirons21681506323: See if it is bedding in in 'cause that's the thing, isn't it? These things have to take, they have to take their own course in some ways

and because it's, it's run by, as you say, by volunteers. It's never going to be quite the same as running a, a business because the, the time scales are 

audioClaireBennington11681506323: that's right. People are, of the work in their own time. 

audioJonathanHirons21681506323: Exactly. , It's a hard job, but you're doing, it sounds like you're doing a great job with it at the moment. So how can we help to, in the podcast, how can we, obviously I will put all this information on the the notes that go with the podcast itself, but is there anything we can do locally to [00:21:00] help?

I would like to help, obviously, or, or the, the, the, the podcast would like to help. So is there anything that we can do specifically that you can you can put our way 

audioClaireBennington11681506323: Jonathan, that helps get the message and the campaign in front of other people. So just of it in the first instance, helping to, to share the links and the QR codes for the campaign. and seeing how it's going and helping us with that Those are all ways that you can help.

audioJonathanHirons21681506323: Is there a way that people can contact you? i'm thinking two things, maybe. Obviously you want people to donate, but is there a way that they can keep in touch with what you are doing, ? Have you got a sort of I don't know something that goes on every couple of months to say this is what's happening, there's an email address that they 

audioClaireBennington11681506323: While. 

audioJonathanHirons21681506323: or whatever.

audioClaireBennington11681506323: People can always email me. That's absolutely fine. I can give you my email address. we [00:22:00] get further into this, we will make updates, letting people know where we're at as well, which will go out on social media. 

audioJonathanHirons21681506323: right. 

audioClaireBennington11681506323: identified a way at this point that people. see apart from onto the link itself and just seeing how much has been raised so far 

audioJonathanHirons21681506323: Yeah. So. Right. So what, what we're gonna do obviously when, when this, when this goes out in the show notes, there will be your links that your link to you, a link to you personally and to the to the just giving page.

I dunno, how do we do QR codes, but we'll try and work out a QR code as well. Obviously that helps people just have to press something and 

audioClaireBennington11681506323: Yes. I think they it with a, a phone or with a, 

audioJonathanHirons21681506323: yeah. It's usual stuff, isn't it? Yeah, that's good. Okay. Well, we'll do all that. [00:23:00] That'll be on the, as I say, it'll be on the notes.

And we the, the, the podcast has its own. Webpage, so we'll put it on your, that 

audioClaireBennington11681506323: Oh, that would 

be fantastic. 

audioJonathanHirons21681506323: Just outta interest, we've we're, we're up to over 20,000 downloads for 

audioClaireBennington11681506323: fantastic. Congratulations. 

audioJonathanHirons21681506323: it's, it's going quite well.

I think it's great and it sounds to me you've got a lot of work on, but it's going in the right 

audioClaireBennington11681506323: hopefully onwards and upwards.

audioJonathanHirons21681506323: Onwards wards, as they say. We'll keep in touch, obviously personally, but also with the, with the campaign. So we'll keep it going at our end anyway and just we'll, we'll send some if, send us some messages if you've got anything really fantastic to tell, we'll put it on the 

audioClaireBennington11681506323: well thank you Jonathan. Really appreciate your support with this. 

audioJonathanHirons21681506323: Thank you very much, Claire, for coming on this. It is great. 

audioClaireBennington11681506323: let me know, [00:24:00] um, if I can give more information, Jonathan. 

audioJonathanHirons21681506323: Thank 

you. 

very 

much

Speaker 4: Thank you for listening to this on the tip of My Tongue podcast. We hope you found it helpful and informative. Now, if you want more help and information about strokes and Aphasia, please go to stroke.org.uk. Say Aphasia. That's SAY Aphasia, or one word.org or the Aphasia page of nhs.uk.

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