Understanding Aphasia: Personal Stories and Community Support

In this episode, Rob Edwards and Jonathan Hirons host Chris Greenhough, a stroke survivor with aphasia who leads support groups, and Lisa Thomas, a senior speech and language therapist with the NHS. They discuss the impact of aphasia, a condition affecting the brain's language capabilities, and the importance of community support and therapy. Chris shares his journey of recovery and involvement in running aphasia support groups, while Lisa talks about the challenges and successes in creating community communication groups. They also touch on the difficulties of raising awareness about aphasia and the need for better support from businesses and transport facilities to help individuals access group sessions.

00:00 Introduction to the Podcast

00:38 Understanding Aphasia

01:16 Chris's Journey with Aphasia

01:42 Lisa's Role and Contributions

02:06 Chris's Aphasia Groups

04:58 Lisa's Connection to Say Aphasia

06:56 Challenges and Solutions in Aphasia Care

10:36 Group Activities and Social Impact

14:52 Transport Issues and Community Support

22:06 Raising Awareness and Future Goals

24:49 Conclusion and Resource

https://www.sayaphasia.org/worcester

Transcript

Podcast - S3 E9 - Chris Greenhough and Lisa Thomas

Host: [00:00:00] In this episode we talk to Chris Grennhough and Lisa Thomas. Chris has Aphasia and runs groups across Gloucester and Worcestershire, and Lisa is a senior speech and language therapist working for the NHS.

Host: Hi, and welcome everybody, and we hope you enjoy this podcast called On the Tip of My Tongue. Now I'm Rob 

Host: Edwards. And I'm Jonathan Hirons. And 

Host: 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 [00:01:00] 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 Aphasia.

Chris and Lisa: I'm Chris Greenhough. Uh, I've had a stroke about 15 and a half years ago. I was aphasic and uh, right sided. Its weakness and obviously I'm talking now, but, uh, I couldn't talk originally. It has been years since each year I got better and better

My name is Lisa Thomas. I am clinical lead for the integrated stroke speech and language therapy service, Harford, she and Worcestershire Health and Care Trust.

That's a mouthful.

Jon: And you remembered it. Thank you both for coming [00:02:00] on the tip of My Tongue podcast. It's great to see you, both of you together as well. Which is good. Maybe we'll start with Chris. So Chris, as you said, , you had your stroke 15 years ago.

That's right. Yeah. Fif and a half years and counting. It was obviously tough for you to begin with. How did you get help to get to where you are now?

Chris and Lisa: So obviously I tried to speech and language therapy at the beginning, but me and her didn't get on and I I stopped. Speaking anyway, uh, because, uh, I just says nothing at the first place. I said possibly yes and no by two weeks time and not the right yes and no. It's, uh, just frustrating.

Over time I got a new speech and language therapist [00:03:00] and I got on really well with her and I just got to keep going and I've,

the thing is I. Really don't like myself speaking at all, but I've got to

do what I can to speak correctly.

So you, I mean, you seem to have done really well actually, from what you're saying, you couldn't speak at all when it started. So you've, you've got to this level, , with help with speech and language therapy. What other things do you do, to keep this going?

You do this, don't

Yeah, exactly. 'Cause, I didn't realize the fact that I had Aphasia because it wasn't, I understood that, that I was speechless. Um, but I haven't really understood, uh, what Aphasia meant. But Colin, Lyle founded a group which was, uh, Say Aphasia in Brighton. And that's that's where he [00:04:00] started.

And it's. Come on since then, and it's brilliant

And when I moved here, six, seven years ago I just, uh, carried on

Jon: was there a group there before you came here? Came to, where you are now in, Gloucestershire and Worcestershire?

Chris and Lisa: Yeah. There was a group in Gloustershire not Say Aphasia, a different name, and I took it over

I changed the name of it.

From, , Aphasia Now to say Aphasia about a year and a half ago, two years ago. But, , Worcester it was a new, new group and me and, Lisa, uh, formulated the plan to open it and it's going from strength to strength

Jon: Yeah, sounds like it. Lisa how did you meet [00:05:00] Chris exactly?

Chris and Lisa: In many ways, Jon I need to thank you for this, because

you won't have realized this, but I read an article in, um, Royal College of Speech and Language Therapist Bulletin, and that directed me to your video. And I watched the video and it was just came at a really opportune moment because my manager had tasked me with setting up a community communication group, which I knew was gonna be a really tall order with such a small team of speech and language therapists.

But in the video you may remember, you've got a, a lovely speech and language therapist, Barbara talking and if ever there was a speech and language therapist who talked my sort of language, it was her and she just, said everything that I was thinking and so. I managed to [00:06:00] track her down. Actually, I promise I wasn't stalking, but I did have to go through, uh, various avenues to try and get a contact number, uh, for her.

She very kindly gave me her time and I spoke to her about what I was trying to do. Talked about your video, and it was really through Barbara that she put me in touch with Say Aphasia.

Jon: Ah, okay.

Chris and Lisa: Yeah. So all you, Jon?

Jon: Something. Yeah.

Chris and Lisa: Yeah,

Jon: Look what I've started.

Chris and Lisa: indeed. Yeah. You should be very proud. Yeah. 

Jon: It's interesting but the magazine you're talking about,

I've never seen it

because I'm not a member,

Chris and Lisa: Ah, 

Jon: I think Barbara sent me a picture of the, article and

that's the only thing I've seen.

So

I'm glad to know that actually people do read it.

Chris and Lisa: they do. 

We had some really good outcome from that article, Jon so you.

Jon: Okay. Let's talk about, what you do. As you said [00:07:00] that there, there are probably not enough SLTs, is that right?. 

Chris and Lisa: Think yeah, absolutely. I 

Jon: never enough is there? So how do you manage? 'cause you are, you've got quite a, a wide area to cover, haven't you? Have you got different people in different places or do they all come from one place 

Chris and Lisa: Worcestershire is the area that I cover, and it's a vast county. And so we do have to cover a lot of ground. I manage a small team that cover both the inpatient rehab facility and also in community as well, going into people's homes. So we have two hubs really for our community stroke service, north and.

South of the county, um, so that we can cover sufficient ground. But you're absolutely right. Sometimes, my team can be 40 minutes traveling between patients, whereas a lot of city therapists their journey time will be much reduced.

Jon: What are you doing with, say, Aphasia? Are you. [00:08:00] Hands on or, just keeping an eye on Chris and seeing what he's up to.

Chris and Lisa: What was really interesting is when I was thinking about, communication group in the community, I knew it was gonna be a tall order to be pulling on the resources from a, a very small team. When I went to meet Chris and his Gloucester group actually, and I really wanted to scope out what it was that people wanted. What did they need from us and put it to them. And I went to some other groups as well. What was really interesting to me actually, Jon is that the further people go on past the actual date of the stroke themselves, it felt as though there was a real urge to lessen the contact with healthcare workers.

Move more into a kind of normalized communication setting. And what struck me is that actually. People really wanted to connect [00:09:00] with others with the same lived experience. And it wasn't so much about having speech and language therapy sessions forever in a day. It was more about, okay, I can take from my speech and language therapy sessions, those strategies, and now can I embed them in a more real life and naturalistic environment.

I think initially it was quite funny because I think there was a part of me that was thinking, but surely you need us, that was my SLT ego

But actually what's emerged from it is a lovely collaborative, , relationship with Chris. Patients will have speech and language therapy, be that in an inpatient setting and then at home, and then we really heavily encourage them to move on and into Say Aphasia.

And what we do is if they are particularly anxious, and some people aren't they're quite sharp. It's a big ask, going to a room in a place that you've not been [00:10:00] before whichever therapist has been working with them will accompany them on that first visit. Yeah, and we very much kind of bob in from time to time 'cause we love to catch up Yep.

With everybody and see how they're doing. I've been invited to Say Aphasia Christmas lunch, so I'm very pleased about that. Yeah, so I'd say it's a really great relationship that's working for everybody really. Yeah.

Jon: This is something I've found doing all these and talking to. Lots of people that's the message that once they get together, the people with APHA get together. They kind of do their own thing

Chris what do you do with your, with your group? Do you have different things you do each week or each month or whatever?

Chris and Lisa: Two groups are very different. The Gloucester group is split into two sessions. One that comes every two weeks, which is, an Aphasia person [00:11:00] and their carer and they just just chat about everything and anything. But normally they would chat about

All the care pasture kits and things like that. But just normal things just to, but 

Jon: kind of social thing really.

Chris and Lisa: Yeah, exactly. That's the point. And because of the fact that I go and speak to them and it's just a matter of me and a guy just having a chat and it's just so worthwhile 

the chatter is irrelevant, but I'm speaking with one voice and she, he or she is speaking with one voice and. You can communicate together and that improves your language and speech skills [00:12:00] immensely. , 

Jon: It's, that's very important, isn't it,

to get people to understand. That they're not kind of not on their own

Chris and Lisa: No, exactly. Because, I am particularly scared of when I introduce myself to a new person that isn't dysphagic

and I clam up and is just ridiculous. Uh, I wouldn't clam up. Priest wrote, but I clam up and I just get nervous and can't speak at all.

Jon: I think we all have different versions of this. I have the same problem. When I go into a shop, and I want to buy something, and I want to ask whether where it is or whatever I have, I run into all sorts of problems.

My words disappear.

Chris and Lisa: Yep. I think so.

Jon: so on a one-to-one basis. I usually manage reasonably [00:13:00] well without having too many problems. I do forget words obviously, but once I'm in a group or , it's something new.

I find it difficult to get all the words out,

Chris and Lisa: I often on the telephone, I used to be a business analyst, just telephone all the time, and I say to, the telephone agent I've had a stroke. Just bear with me and that's better for me and better for her or him. And it's just relaxing and calm things down immensely.

Jon: Does it work most of the time? Do mean people, are they helpful, do you find

Chris and Lisa: 99% of the time I've worked.

Jon: My experience as well. Once you tell people

that you've got a certain problem, whatever the problem is they usually. Amazing how good people are, isn't [00:14:00] it?

Chris and Lisa: Some people are amazing.

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Jon: So how many people in the group? Both there? Two groups I know, but how many have you got altogether?

Chris and Lisa: About 12 in one group and 15, 20 in the another.

Jon: that's quite a lot, isn't it?

That's a lot. Yeah.

Chris and Lisa: Because it's getting stronger and stronger. And possibly we need a bigger room.

Jon: That's a good sign.

Chris and Lisa: Yeah.

Jon: You need a bigger room. So what about perhaps Lisa can tell me this, how easy or difficult it is for people to get to these [00:15:00] groups? Because obviously you said you're in a big, you're pretty fairly large county.

Chris and Lisa: Yeah.

Jon: How do you get people into these

new, these groups?

Chris and Lisa: That's a real interesting question actually, if I were to say that there's one issue that we've had it is around transport for individuals to be able to access the groups. We deliberately chose our one area in center of Worcester, so we knew that it was, on a bus link.

We are just about to open another group say Aphasia. We're about to open another group in Bromsgrove, which is great. So now we've kind of got either side of the county, which is brilliant. But certainly what we have found is that for those people that haven't got a member that can drive them.

To say Aphasia or indeed, , they're unable to drive themselves, and perhaps have other difficulties. It could be a leg brace or what have you. It's really difficult [00:16:00] for them to access via public transport. And in fact, you told me a story Chris, didn't you, about one gentleman who I'd introduced to the group who decided to try and make his own way there by taxi.

Yeah. And how much did it cost him? Grace. Uh, 50 pounds. 50 pounds. The crux of the matter is that it's often those people that living by themselves, that actually are more at risk of being isolated. Chris and I were invited by a local rotary club to go and talk to them, and our idea was to see whether we could get some funding to support with the transport costs so that we could really support those that were most at risk of being isolated. Turned out to be that the Rotary Club meet in the pub. Yeah.

So we had a great evening with them. We had a great evening with them and they really came on board with us. And we are gonna be hosting a joint venture next year, which is a race night to support funding to go into that. [00:17:00] Everybody talks about, oh there's local transport that's really cheap.

Actually it isn't really cheap. Worcestershire on Wheels is not cheap for people that are living on benefits or have restricted finances. But we have found that Worcestershire on demand are going to be able to support people getting to our next group in Bromsgrove. But we are still lacking.

Transport or, support to get our patients to Lippard hub. So it that's probably one of the issues. A colleague who I did some peer sharing with in Herefordshire and they've. Also gone ahead and started to say Aphasia group in Herefordshire. Again, a similar county, vast rural areas.

That's also an issue for them as well. So something that we need to fix. But at the moment we are we've made some really good links and we are looking for other community support with that. 

Jon: You are working with people who are volunteers and it's not, [00:18:00] it's, they're doing it for, for the right reasons, but they can't always turn up, can they for, 'cause they have other problems of their

Chris and Lisa: And in fact, I can think of a number of patients that, one of my team or I myself is supported to go into the first say, phase session with them, to introduce them to it, see what they think of it. And they've said, look, I would love to come back again. I just can't get to it easily.

Jon: Your problems are the, they're the same everywhere. I think,

Chris and Lisa: Oh yeah.

Jon: As you say, unless you are in a city and people can get to stuff quite easily,

Chris and Lisa: Yeah. Or you've got somebody that will drive you or you are able to 

Jon: But people live on their own, don't they?

Chris and Lisa: Yes. People live on their own, people have not been able to return to work. So finance is a difficulty for them.

Jon: So I talking about age then, Chris

I always think that we shouldn't be talking about age in that sense, because there are lots of people of your age group. Were you when you got your stroke who were quite [00:19:00] young?

Mean, we're talking people in their twenties and thirties and it's not an, it's not something that's people strokes and things. You think, oh, older people get strokes and that sort of thing, but it's not like that at all, is it?

Chris and Lisa: Exactly. And I don't, I know that it was strokes are older people, but it's getting more and more younger people nowadays. Just through possibly stress and and hole in my heart or something like that. It's just just,

Jon: And, and I, I know personally, two or three people younger than you, would you believe, even younger than you, Chris who Yeah. Who have to build their lives, don't they,

with what they've got. And you are doing a grand job, of course, 'cause you're doing what you're doing.

Chris and Lisa: Exactly. But the thing is now that they've got an awful lot more technology [00:20:00] and they can basically stick tube up into the head and it's amazing what I can 'cause, what I do is volunteering at a reconnect. So every Monday afternoon I go to Cheltenham Hospital and I just see the patients and uh, befriend them.

Jon: Right.

Chris and Lisa: And it was really great and the, there's a couple of people who didn't talk until one week and did talk the next week. It's phenomenal. And what they can achieve, it's,

Jon: Technology and medicine is moving on all the time, isn't it?

So things that we couldn't have thought about maybe 10, 20 years ago

Chris and Lisa: Yeah.

Jon: [00:21:00] happen now, don't they?

So that's a good thing.

Chris and Lisa: yeah, exactly. Yeah. Hopefully it's a really good thing. But obviously if you've not got anyone there to, to help you if you have had a, have a stroke then

One patient at that I know, they took two days until they got an ambulance because he was on his own and it was just,

Jon: That's a wor very worrying thing, isn't it?

Chris and Lisa: yeah.

Jon: So is there anything you can do better for what you are doing at the moment? Sounds like you are, have having, you're doing really well, I think we've talked about transport being a, a big problem. Is there another thing like transport that could make things a lot easier for people with Aphasia and the groups that they. What do you think? [00:22:00] Apart from a lot of money?

Chris and Lisa: The reason I loved say Aphasia and the se Aphasia model for me, what really kind of drew me towards it was that, um, the peer leaders are all people who have Aphasia, and there was something really important about that lived experience and that connection. And I really value what say Aphasia are doing because I recognize even with my own professional body, honestly, we haven't been great in raising public awareness about Aphasia.

So many people I meet say, I've never even heard the word what he said. And this is something that, speech and language therapists have been working with for a long time. So for me what I love about PHAs and I see the, my in my own head. I think that the more groups that they open up [00:23:00] across the whole country, these lovely little sort of connections of people getting together.

That in itself is quite a force in spreading the word out there, getting the message across about Aphasia within your community. And I see that as a real plus. The other thing that I would really like to see lobbied much more is things like utility companies and banks. Anything like that where a person with Aphasia has to try and deal with and navigate, which with the advent of technology and, you know, everybody loves technology, but actually it's made their lives a whole lot more complicated.

You can't get to a person, you get stuck in an automated telephone queue. Very few big name companies. Make any allowance for people with Aphasia.

And that really frustrates me. So I think if I could wave a magic wand, it would be. The message about Aphasia [00:24:00] was out there in the, the right wider audience and public knowledge. Yeah. And business knowledge as well. Yeah. Would you agree with that? Yeah, because I can't read or write but I can speak reasonably well.

But I can't every. Business is speak to me on the telephone but.

Do text message.

Jon: Oh, yeah.

Chris and Lisa: It's annoying. That's just impossible. 

Jon: to do, isn't it? Just picking on your point, Lisa, that the, I think the worst companies. Are the technology companies,

Chris and Lisa: Yeah, they're so

driven and focused, aren't they? Absolutely. Good Lord. Yeah.

And I see it, the stress that this causes, you know, it's phenomenal.

Jon: Well, it's great talking to you. I think you're doing a grand job. Really are,

Out in, lovely. Worcestershire and Gloucestershire. And it's very interesting to [00:25:00] talk to you and obviously good luck with, uh, with your, um, your endeavors and and I will keep in touch with you.

Chris and Lisa: Okay, 

Jon: Okay. Thanks very much. Thanks for coming.

Speaker 5: Enjoying the podcast, subscribe for more episodes and support the journey, please go to tip@myfilm.com in the description. Thank you.

Speaker 6: 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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