On the tip of my tongue - talking about Aphasia
Jonathan Hirons's journey following his stroke and diagnosis of aphasia is both inspiring and informative. Here’s a summary of his experience and insights about aphasia:
### Jonathan's Experience with Aphasia
1. **Initial Incident**: In January 2019, while in a business meeting, Jonathan began to feel strange and soon realized he could not communicate effectively. His colleagues quickly called for medical help.
2. **Medical Emergency**: He was rushed to University College Hospital, where scans revealed he had suffered a stroke due to a bleed on the brain. He spent five nights in the hospital and was diagnosed with **aphasia**.
3. **Impact on Daily Life**:
- Jonathan struggled with basic tasks such as speaking, reading, and writing.
- He had memory issues, recalling only his postcode but not his full address or other personal information.
- He faced challenges in understanding spoken language but could still sign his name.
4. **Support from Family**: His wife, Ann, played a crucial role in his recovery:
- She encouraged him to read aloud daily and used flashcards to aid in word recognition and writing.
- This early intervention was vital for his rehabilitation.
5. **Progress Through Therapy**: With the help of speech therapy, Jonathan made significant improvements:
- He regained much of his ability to read and write, although he still experiences difficulties, especially when tired.
6. **Advocacy and Awareness**:
- Jonathan has turned his experiences into a creative outlet by producing films, including **"On the Tip of My Tongue"** and **"What is Aphasia?"** These films aim to educate others about aphasia and its challenges.
- He actively shares his story to raise awareness about aphasia as a hidden disability and the ongoing need for support beyond initial rehabilitation.
### Understanding Aphasia
Aphasia is a language disorder that affects communication abilities, including:
- **Speaking**: Difficulty in forming words or sentences.
- **Understanding**: Challenges in comprehending spoken or written language.
- **Reading and Writing**: Problems with reading text or writing coherently.
### Key Takeaways
- **Aphasia is often a result of brain damage**, commonly from strokes, and can significantly impact daily life.
- **Early intervention and support** are crucial for recovery.
- **Awareness and education** about aphasia can help reduce stigma and improve support for those affected.
Jonathan's story highlights the resilience of individuals facing such challenges and the importance of community support in their recovery journey.
On the tip of my tongue - talking about Aphasia
On the tip of my tongue Series 2 Episode 4 - Derek Munn
"Instant communication is crucial post-stroke. Derek Munn discusses the power of inclusion and how someone with Aphasia could be your next best hire. Listen to their story in our latest episode! #StrokeAwareness #Inclusion #Aphasia"
My name is Derek Munn and I'm the Director of Policy and Public Affairs at the Royal College of Speech and Language Therapists.
I have a job at the Royal College which embraces working with the four governments of the United Kingdom and the Parliaments and Assemblies, managing the policy legislative work and influencing campaigning work we do, also with the NHS in each country and other agencies. Other bits of my work include the international work of the Royal College, the work we do on making the profession greener, more sustainable, and I'm also the lead on the jargon is co production, which is working towards both. Royal College is an organisation, but also the profession of speech and language therapy, doing everything it does in genuine partnership with people who have lived experience of speech, language, communication, and swallowing needs.
https://www.rcslt.org
Support the show: https://www.paypal.com/paypalme/JonathanHirons
To watch Jonathan’s film: https://tipofmytonguefilm.com
http://x.com/buffaloloungeuk
https://www.linkedin.com/in/jonathanhirons/
The Tavistock Trust for Aphasia website
http://aphasiatavistocktrust.org
Podcast S2 E4 - Derek Munn
[00:00:00] From the very moment that a person goes into hospital post stroke you've got to be thinking about communication from the outset. That person with aphasia applying for that job could be the best colleague you need.
In this episode, we're talking to Derek Munn, Director of Policy and Public Affairs at the Royal College of Speech and Language Therapists, about the work they do with people with all kinds of speech and language difficulties, and in particular, those with aphasia.
[00:01:00]
Derek: good afternoon to Jonathan and to Rob and to those listening, whether it's [00:02:00] morning, afternoon or evening when you listen. It's a pleasure to be on the Tip of My Tongue podcast today. My name is Derek Munn and I'm the Director of Policy and Public Affairs at the Royal College of Speech and Language Therapists.
So, I have a job at the Royal College which embraces working with the four governments of the United Kingdom and the Parliaments and Assemblies, managing the policy legislative work and influencing campaigning work we do, also with the NHS in each country and other agencies. Other bits of my work include the international work of the Royal College, the work we do on making the profession greener, more sustainable, and I'm also the lead on the jargon is co production, which is working towards both. Royal College is an organisation, but also the profession of speech and language therapy, doing [00:03:00] everything it does in genuine partnership with people who have lived experience of speech, language, communication, and swallowing needs.
@Rob: Hi, Derek. Thank you so much for joining us on the podcast. It's great to have you with us. Can you tell us a bit about the Royal College of Speech and Language Therapists? How did it start and who does it serve
Derek: the Royal College of Speech and Language Therapists is the professional body for speech and language therapists in the UK. You don't have to be a member to be a speech therapist in the UK. But 96 percent of speech therapists in the UK choose to be members. and there were around 22, 000 speech therapists in the UK today. the profession, there were various kind of voice doctors and things in the 18th and 19th century. But the professionals we think of it actually got going after the first world war, where soldiers were coming back with, [00:04:00] you know, traumatic head or brain injury, sometimes injury to, to the apparatus of the voice and the throat, and sometimes just the psychological consequences of battle. doctors and others were realizing there's an issue here that needs to be dealt with. And some of the early work in what became speech and language therapy was actually in that area. Post conflict trauma, which remains an area that we work in right now. There's a whole team of speech therapists at the military hospital, for example. The Royal College was founded in 1946. Now, if you remember the film The King's Speech, you'll remember Lionel Logue. we always joke about it in a couple of ways. Speech language therapy is an overwhelmingly female profession. 96 percent of speech therapists are women, only 4 percent are men.
And that's true in most countries. and if you think back to 1946, it was a time when [00:05:00] women gave up work when they got married. So most practicing speech therapists were unmarried. So we have the letter that they sent to the king in 1946 where Lionel Logue says, You know, I've helped you out. We're setting up a college.
Would you be our patron? and if you look at the list of signatories, it's Miss Phyllis such and such and Miss Gladys such and such. And in the middle, just this one bloke lying alone, which is pretty much how things still are today. speech therapy, a lot of it, you might find this interesting, Rob For a long time, it was based in drama schools, acting schools, because the voice element was seen as akin to the work that was done in actor's training. So, right up until the 70s, speech therapy courses were based in drama schools, and then it became a degree profession in the early 70s.
And today, About 60 percent of speech therapists work with children, [00:06:00] about 40 percent work with adults, and within that adult cohort, the biggest single area, it tends to get talked about by, the pathway, not the condition, so rather than aphasia, we would talk about stroke. but the biggest single condition that adult therapists work with would be stroke.
@Rob: Well, in the film, as I said, I think it's an absolutely wonderful film. So he was, he was a pioneer, was he?
Derek: a pioneer, and he was one of the founding members of
@Rob: One of the things you get from the film is very powerfully, I think, is how the old school doctors are treating the king sticking marbles in his mouth. And he has a completely, it has a sort of therapeutic kind of approach. Addressing the
whole person's background, psychology, and that's a major element of modern way of thinking
Derek: it absolutely right, Rob Speech therapists often [00:07:00] say that they don't mostly use what's called a medical model. They mostly use what's called a biopsychosocial model. It's undoubtedly the case that if I've got, as, you know, some stroke survivors do, you know, challenges with the musculature of the throat, which means that I could choke, well, I want a pretty medical style intervention.
To check that I've done the right screening There are things where medicine is exactly what you need. But actually if you're talking about the totality of human language and communication, it's a social phenomenon. And it's about the way that we interact and use, and about how I feel and about my confidence and about, and all of those things need to come into it.
@Rob: We sometimes use on this podcast, we have used, I think the phrase, you more your voice than you are your body. Me in a wheelchair is me in a wheelchair, but me without my voice being able to speak fluently and clearly, somehow I lose myself. That is the expression of my personality and my, identity.
Derek: if you think about what, what [00:08:00] defines Homo sapiens is a species. It is the language function.
Jon: obviously we're concerned with aphasia on this particular, and it's, it's interesting to know Your background of the college and, and yourself as well.
What's your, feeling on, on how we are at the moment with, with, aphasia as a group of people?
Derek: That's very interesting. And actually just in the Royal College building on Monday, I hosted a meeting of the Aphasia Alliance, which is where all of the organizations from across the UK that have an interest in aphasia come together basically to talk about issues of common concern. So that would include the Tavistock Trust with whom you're familiar. it would include the Stroke Association and Chest Heart and Stroke Scotland, but also A lot of local aphasia support groups, many of which are collaborations between stroke survivors, if that's the term you'd fill in the podcast, or let me know if not, and speech and language therapists. [00:09:00] And we chatted a bit about, Jonathan, about this when we were thinking about this podcast. Because when I go to meetings of the aphasia alliance, People are very keen to say aphasia is about more than stroke. There's more than one kind of aphasia, and there's lots of reasons why you might have aphasia, and stroke is only one of them. and one of our great parliamentary supporters, General Lord Ramsbotham, who died last year, actually at the end of his life had Primary progressive aphasia, which is effectively a kind of dementia, and we're running a big campaign about that now actually with NHS a specialist service re established.
So I know that aphasia and stroke are like a Venn diagram, but quite a lot of the influencing and lobbying work is based around the fact that if we're talking in the English context, integrated care systems and trusts, and there would be equivalents in the devolved nations, are commissioning a stroke pathway.
Now commissioning a multidisciplinary stroke pathway [00:10:00] and for us there have been a number of challenges and pinch points around that which we continue to work on. The first is what tends to get called safe staffing. We would prefer to say safe and effective staffing and can you quantify How many speak therapists do you need in the stroke pathway?
It's really hard, but it's easier actually to do that in the context of an acute ward than it is to say, how many speak therapists do you need with a population of deprived children in a multi lingual ward? challenge we've had at the acute end of the pathway, it's been that partly to do with resource and partly to do with concerns for safety, the focus all goes on swallowing.
It all goes on dysphagia assessment. And we have to work very hard to say, From the very moment that a person goes into hospital post stroke, you've got to be thinking about communication right from the outset. [00:11:00] The other challenge we have is further down the track. You know, after discharge, after the community rehabilitation that you get, then what?
People talk all the time about the cliff edge, About the availability of ongoing rehabilitation in the community. But also about, and this relates to what Wes Streeting has been talking about, the NHS needing to be a driver of economic growth. Because I talk all the time with people with experience of stroke who are saying, when do I get back to work?
When do I get back to making a positive contribution to society? When do I get back with the voice? Such as I and I have it, to, you know, to doing the things which make real impact in, you know, and sometimes people have said to me, Derek, I don't want, you know, of course day centres matter. Of course rehab provision has its place, but that's not where I see my future as a stroke survivor.
So we've got an interest in influencing all along that [00:12:00] aphasia, Jonathan mentioned this to me when we spoke last week, is one of those issues, one that nobody knows what it is. Unless you've got experience, you've not really heard of it. I actually had a conversation with Google a few years ago about whether searches for dysphasia could get automatically rerouted to aphasia because of the confusion between those two terms. part of the challenge for me is that There are lots of issues that speech and language therapists work with, which nobody's heard of. There's a campaign going on right now about what's called Disarthria, which is where the voice is very weak. Common, for example, in Parkinson's, and a group of passionate people trying to promote awareness.
The single most common, condition that we work with is called Developmental Language Disorder, and it's where the brain has difficulty processing language effectively.
So, do I want more people to know about [00:13:00] aphasia when they've heard of it? Yes I do, but I have to be honest and say, it's not the only condition for which I have that challenge.
Jon: One of the things we talked about, we've already had somebody on, the podcast who's, It's typically the person you've just been speaking about, Tom, who, who is, 35 and he's not had a stroke, he fell down some stairs and he's desperate to get back into work but he's finding the whole thing too difficult, well, quite difficult for him to do.
And presumably in your experience, you've got a load of people who are in that sort of situation
Derek: it comes about joined up government, and actually Rob, this goes back to your initial question to me about who the Royal College we are the professional body for speech therapists, but part of our charitable objectives, as it's put, is about making society a better place.
Thanks. For people who experience communication and swallowing barriers. And part of that is saying to government, be joined up [00:14:00] here. Wes's right to say that the NHS can be a driver of economic growth. Meanwhile, we've got the Department for Work and Pensions talking about social security reform and getting people back into work.
Well, join the damn thing up. Yeah,
@Rob: Can you make workplaces more aphasia friendly, if you like? Like you
can put in ramps for people with wheelchairs. There must be practical steps that can be taken to make employers aware of what they could do to help people with aphasia in their working life.
Derek: absolutely Rob and many of them will be common. So we have a, free training product called Communication Access uk, and we encourage organizations to, to sign up. It's a free basic training and says whether you are meeting somebody with aphasia or someone who Stammers severely, or someone who, who does not speak for whatever reason.
Or, use it as a communication [00:15:00] device, or, because they, the way that their neurodiversity expresses. Has difficulty with eye contact or conversational turn taking. Here's some basics that you need to do. Take your time. You know, make appropriate eye contact. Ask people what works for them. And in the working context, you know, make sure that every time you've got a voice activated system, you've got a manual thing so that people aren't reliant on, fluency and volume to engage with voice activation. that people working on screen are equal through a keyboard. And particularly if you link that to voice synthesis software. Well actually, everybody at home on a keyboard is equal in the workplace all of a sudden. Yeah? there's no reason not to do that. think about how you set up meetings.
Think about the training people have.
You know, which we do at the Royal College. Because most people who work at the [00:16:00] Royal College are Not speech and language therapists. So the first time, you know, I would take colleagues into a meeting and say, look, we're working with people with aphasia here.
Here's what you need to remember. Here's the basics. You know? It only takes five minutes, and there is so much overlap between communicating effectively with people with communication challenge and basic politeness. that's as true in the workplace as there's any other context.
Jon: Yeah, I think I'm a little cynical about, I'm not by you, but by the whole thing with people. I was listening to something the other day about people trying to get a job, you know, and it's, So we say someone who hasn't got anything like aphasia or has just got on, you know, just looking for a job is quite difficult for them.
It's going to be doubly difficult for anybody with some sort of, disability, either [00:17:00] physical or otherwise. It must be a hard job, a hard sell for your, for your organization to say to people, Oh, well, you know, we'll help people be better off in the workplace.
When people with companies haven't got the time or the inclination to do this sort of thing. They just want someone to do the job.
Derek: That's sometimes the case, and there's sometimes the push factor of people knowing that they need to be shown to be disability friendly. But there are people out there who are genuinely committed to it, but don't know what they should do. if you say to them, it's not that hard, I know that people at Stroke Association do it anyway.
What, what are the basic tips? How, what can you, you give to people and say to people to go, don't, don't be scared about this, you know, that, that person with Aphasia applying for that job could be the best colleague you need
@Rob: we should have a conversation about maybe the tips, the practical tips that you can do with someone with aphasia, how to get [00:18:00] the best out of them.
Derek: making those available in a downloaded form that people can give to prospective employers or whatever it might be.
@Rob: It would be something like, take your time,
Derek: yes, yes. We tend to say, take your time, ask people what helps. it's interesting because if you talk to people who stammer, they will say, never finish my sentences. but sometimes someone with stammering or someone with aphasia will say, I can't get that word, what is it?
Well, I can respond to it, but otherwise I will never, I hope, never finish the sentence of somebody who is stammering when you tell people that they go, oh yes of course, because we have this natural human instinct to keep up the flow conversation
and we have a built in intolerance to silence. so you get this particularly, I mean, it varies by culture. In Britain, it's 4. 8 seconds. Yeah, and you can [00:19:00] tell if you're ever in a conversation, stay quiet and count to 5. You will never get there. Somebody will say something. We cannot tolerate a silence of 5 seconds.
@Rob: gosh,
Derek: If you, if you're working with somebody with a communication device, I always give Stephen Hawking as the example.
But I'm quite commonly in meetings with people who use what's called AAC, Assisted or Meditative Communication. And of course the protocol there is you're having a conversation. But it can take them five minutes to construct a sentence using eye gaze. And during that time, you wait. And you maintain eye contact.
Five minutes later, the sentence comes back, and you give your sentence, and on you go with the conversation. So, yeah, it's a fascinating area.
Jon: One of the things that they teach salespeople is they do their pitch, whatever it might be, and then shut up because it's exactly what you said. And the first person to say [00:20:00] something is usually the other person because they can't stand the, the silence of, as you say, five seconds or whatever.
Derek: Do it too. So you ever media training, one of the tricks you're told to watch out for is where the journalist just goes quiet. And you fill the gap,
Jon: same trick. Different, different profession. Rob, obviously to you, this is, this is quite interesting because obviously you've had voice training, haven't you, in your time.
@Rob: I have, when I was with the RSC, yeah,
Jon: I'm going back to your thing, Derek, about originally everything was in, drama schools, et cetera. Was it, was it same for you, Rob? Can you, can you remember that far back?
@Rob: Barely, Yeah, but yes, no, it's drama school, yeah, of course, voice training. Which was both a sort of technical thing breathing and whatever and and also a sort of psychological thing, a sort of therapy thing I don't know whether that is really [00:21:00] speech therapy, as we're talking about now.
I don't think it is. What I had was a sort of rather specific, professional training.
Derek: you're right Rob, there can still be a misconception in some quarters that speech therapists do elocution, if I'm working with a kid with a Scouse accent, I want them to talk Scouse.
And actually one of the things we use with MPs, when MPs are elected, we send them a note about speech and language therapy. But on one side we have a thing about voice tips. You're in hydration and looking after, and the MPs get it straight away because politicians talk for a living. So they just, you know, that's a way, a way into them because they immediately understand.
@Rob: exactly what you said, I think the training, to be fair to the RSC, there was no accent correction or anything like that. They'd be very offended by that. Even though most, I suppose, certainly Shakespearean actors would speak in what's known as RP, Received Pronunciation, , there's certainly no attempt [00:22:00] to overrule someone's accent. But yes, but it is what you said. It's actually just maintaining the health of the voice. And the voice box and being able to, if you're going to speak like a politician for long periods, being able to do that in a healthy way, then you don't get hoarse and lose your voice.
Sorry, I don't have anything to say about
My acting training.
Jon: That's it. You can go now.
Derek: I'm going to go back and look at your back catalogue, Rob, and see, see, see some of the stuff you were in.
@Rob: Silences, let's time it. That's fascinating. Are you saying that in other cultures,
five seconds is nothing, you know, people wait ten seconds?
Derek: There are cultures which can tolerate very long periods of silence. and I remember I had a Spanish teacher one time who was Argentinian, and she said that in her culture, effectively, The toleration time was zero.
@Rob: You can't imagine in Italy that, you know, it's
down to a nanosecond
[00:23:00]
Jon: So, going back to what we want to do, or what we're trying to do is raise awareness. One thing , we picked up, partly talking to, Suzanne Beek and, and just things that we've picked up on our own. Is that in fact, there are a lot of, people working over, about aphasia.
But it, it tend to be,, research based rather than, like us, or like me anyway. Somebody's actually done, got it and, And is living with it and so on have you got a thought about whether should there be more, opportunities for people with aphasia to talk about aphasia rather than someone who has say, You know, research.
It sounds very bad. I don't know. That sounds [00:24:00] Jonathan, them down,
Derek: You're 100 percent right. So, yes, you're absolutely correct. you know, if there's a debate in Parliament about, the thing it would be probably be about stroke services. You know, we will make sure that we co badge our briefing with the Stroke Association. It's a joint thing.
But if you really want to make an impact, Use a person with lived experience. And journalists, you'll notice when journalists will be going we need the case study, we need the mother and baby, we need whatever it is. let me give you an example. In Northern Ireland, there's legislation around mental capacity.
So this is the determination of when somebody is mentally fit to make decisions about their, their life and their care. and that can overlap with language because sometimes, People can appear to have completely closed into fluent language, and that is masking an inability, really, to understand and consent.
In other cases, people's communication challenges [00:25:00] are such that, even though they have mental capacity, they can't, communicate effectively. And, when the Mental Capacity Legislation was going through in Northern Ireland, we took in front of the committee of politicians, a woman called Clodagh, and she was a police officer who had had a stroke in her thirties.
And she'd been left with only eye gaze for a period of time. So, there was a point where she was going to be declared mentally incapable, her decisions about her life and care taken from her. And then a speech therapist noticed that she had eye gaze, yeah? Bought a communication board, and off they went. And? Putting Clodagh in front of that parliamentary committee was what got speech, language and communication written into the Northern Ireland legislation, I have no doubt. The power of that service user telling her story. so there is [00:26:00] nothing more, when it comes to raising awareness of aphasia, if we do find ourselves in front of parliamentary committees or on the sofa on this morning or the one show or whatever, I would much rather that a person with lived experience of aphasia.
was their timeline story. It will be a thousand times, illustrative of me. Now there's loads of different, if you hired a public affairs company, they'll give you all sorts of ways you can think about raising awareness of things. People always talk about though different things like, you know, wouldn't it be great if There was a character in a soap opera who has aphasia.
well, yes, it would. Tell you what would be even better. A character who has aphasia who's just getting on with their life and their disability isn't the point. so there were ways and means, but we need to go with, we sometimes talk about autism here. There was a time when no one had heard about autism. now if I walk out of my office out onto Borough High Street in London, most people have a conception of autism. [00:27:00] It might not be accurate, it might not be up to date, but people have got a rough and ready conception of autism as a thing, right? And aphasia is one of those conditions that we need to get on that same journey, that if I meet someone on Borough High Street, they will go, oh, aphasia, that's when you have, now these things take time.
take time, but hey, you know, it steps on a journey.
@Rob: Think we're moving forward? Or do you think we're stuck in a rut?
Derek: this is based on no evidence whatsoever. My personal perception as someone who works in the sector across all sorts of conditions would be that it's a holding pattern. It's not really going anywhere. it's not, it's going neither forward nor back. who do you need to know about this? Cause this is another thing we've talked about and it was something actually when we were working on dysphagia awareness. Yeah, so problems with the swallow mechanism, the swallow reflex and blockages and everything. Dysphasia [00:28:00] is problems with swallowing,
common after stroke, and it can be Choking, it can be the reflex with dementia and not very cheerful subject, guys, but with advanced dementia what would get you in the end would be the loss of the swallow reflex.
@Rob: Yes.
Jon: right, okay
Derek: when the brain can no longer commit to the swallow reflex, well, you're gonna choke. Yeah. and there were different modified textures of food and all of that. So that whole area is called dysphagia. When we were talking about dysphagia, what we realized was that our target audience wasn't really the general public.
What we needed was other healthcare professionals to know about it and staff working in care homes. And so you need to think, well, you know, of course we want there to be general awareness, but who is it? The politicians? Is it the budget holders in the NHS commissioning the services? Is it the people that people with aphasia are going to meet and work with in [00:29:00] everyday life?
Actually, in that case, we needed doctors and nurses. and care support workers to know about swallowing problems. They were our target audience.
Jon: Rob said this the other day, we were, not about that, but about the aphasia, because I was saying to him, well, you know, we need to kind of get, you know, more people interested in, in the podcast, for instance. And Rob said, well, . It's a sort of small market in because it's quite contained, isn't it?
And, and I think you've just picked, picked on that particular point because where do we go with it? I mean, we can tell people who have family, Who have aphasia. We can talk and give them more support perhaps in the way that what we do. But I, I don't think we get very far with the, the general public or, or even, the gps.
Because the gps are busy doing lots of things
Derek: I agree GPs are an [00:30:00] important audience and a really hard one to crack.
I mean it was many years ago, but I remember meeting people at the Royal College of GPs and the then president of the Royal College of GPs said, do you know, Derek, I think in 30 years of general practice, I've never referred someone to a speech therapy. Okay? way to make me feel, make me feel good about myself. in terms of your podcast, I mean, if you can send me the link once this is up, we're absolutely going to promote it through
Jon: Of course, yeah,
Derek: channels, and out there to the speech therapy community.
Jon: We are moving forward in the sense that we're talking to you for a start, you know, because we've got that far. And one of the things that also we, Rob and I talked about was the probably need to get more people with actual, you know, aphasia on the podcast because obviously we've talked to people who are, you know, charities and all that, you know, say aphasia
, and I'm working on getting some more people with aphasia to come on to the, to the podcast just to sort [00:31:00] of as you say, it's, it's somebody's lived experience, isn't it? You know, so we can, rather than us talking about it.
@Rob: I was just thinking about what you said about it's a very powerful story, isn't it? This woman who, They were about to sort of consign her to the dustbin, so to speak, when somebody noticed that she had eye contact and eye movement, and then suddenly she was still in there and they were able to kind of communicate with her.
So I'll be moving that. In a way, we need to educate the whole of society about disability in general, perhaps. I mean, but we are doing that. I guess more people are aware of it, and we have you know, an Olympics for the people, disabled people, people with problems, movement or whatever. It's a bigger thing now, isn't it?
But it is about educating us all to kind [00:32:00] of see all the people who, are a little bit different in whatever way.
Derek: I think there's a willingness. I think if all the discriminations there are in the world, I mean, sadly there are some people who have bigotry views about disabled people, but in the main, people regard Disabled people benignly and with goodwill, but they either don't think, or don't know what to do, or if we're talking about disabilities that are not visible, they just don't notice.
@Rob: And also the point you made, this person might actually be your best colleague. They might actually be the best person for this job. If you can kind of unlock a way of getting them to communicate. It isn't just an act of charity, as it were, on the part of an employer or whatever, to, feeling sorry for people, try and include them and whatever.
They are actually A huge productive element of society that might be being ignored. [00:33:00] We can't afford to do that as of society as a whole.
Derek: Totally. And in line with the messages that the new UK government is putting out,
well,
Jon: this has been fantastic, the, and it's really interesting to talk to, talk to you, because you have some insight that I think we've not had before, because you've got a wide remit, I suppose, in many ways. And in your, your, I'm looking at your experience as well. you're in a sort of different different league,
Derek: to say, my own personal experience is I trained in linguistics. I'm a linguist. but then I spent a lot of my career in politics, working for a political party, being a special advisor to a First Minister of Scotland, working in Parliament. So, yeah, I bring that kind of, both a language background and a political background to the, to the job that I do now.
Jon: but it's helped you, it helps you obviously in your current position as well. Does it not?
Derek: Yeah.
I think particularly that, you know, I've been alongside government [00:34:00] ministers when they are making choices, and I know how things look from that side of the table. And from that side of the table, it's what are the newspapers saying? What are people in my constituency saying? Have I got any money?
What are my legally required So, I think You talked about researchers earlier on, and I have A talk I do with researchers about influencing, and I think, so look, as researchers, you're going to go out and collect the evidence, and then you're going to go, well, here's what the evidence says. But that's not what it's like for a politician or a decision maker.
They've got a load of competing voices and pressures. And sorry to say, the scientific evidence is only one of them,
Jon: it's very, it's very layered, isn't it? Like what, what they're, they're, what they're trying to do is. As you say, there's so many things going on all at once. And they've got to make a correct or incorrect [00:35:00] decision, I suppose that's what happens, isn't it? And go with what they think
Derek: So it's about going, and I think this is a thing. for, you know, the work around raising the profile of aphasia. If you're talking to decision makers and budget holders, it's thinking, how can I help them? It's going to them and saying, I know that you want to get more people back into work. Here's how working with people with aphasia can help you do that.
Jon: Okay. Well, that's a, that's a takeaway.
Derek: pleasure, Grant. Thank
Jon: no, it's been really, really interesting and and more power to your elbow as they say.
@Rob: Yeah,
Derek: I look forward to to it back and spreading
Jon: That's great. Thank you very much.
Derek: very much.
Jon: Thanks. Take care.
Derek: Bye bye.
Jon: Bye bye. Bye bye.
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, [00:36:00] say aphasia, that's s a y aphasia, or one word, dot org, or the aphasia page of nhs. uk.