Podcast S2 E6 - Emma Rich
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The whole approach to looking at rehabilitation and backers community has to come with some hope. And that's the one thing I want people to feel that they have Aphasia is that you do have hope. You should have hope. You might have a slightly different life, but it's not to say that you can't continue and you don't have a part to play in society.
Three years ago, Emma Rich had a severe bleed on the brain and in hospital she was classed as brain dead. Now, Emma is the charity coordinator for Sayaphasia. We talk to her about her recovery and getting back to work.
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So hi, I'm Emma, I'm Emma Rich. I'm the Charity Coordinator at Say Aphasia. Welcome, Emma. It's great to have you with me. Perhaps you can start by letting everybody know what happened to you and your aphasia. About this time of year, three years ago, I had a severe bleed on the brain. I passed out at the top of the stairs.
In my house, I was going through a really stressful time at work, a number of different contributing factors, and it resulted in two brain hemorrhages, I had a midline shift, and I was lucky that my husband was in the house, called the ambulance, came within five minutes. I lived down the road from hospital, another lucky factor, but by the time I When I reached the hospital, I had a [00:03:00] Glasgow school coma score of 3, with fixated pupils, and so basically I was classed as brain dead.
The neurosurgeon gave me a mantelloid therapy, which he said is the last resort for brain injury patients, to see if their eyes would pick up, and so there's some, the eyes would be reactive, so my eyes Did react to it and I went, underwent an emergency craniotomy to get rid of the bleeds on the brain.
There was an a coma for I think roughly two weeks, and I also lost the sight in one eye from the bleeds on the brain, and I actually got this night back in my eye. A year later, they operated and that felt like. An absolute miracle, but I got my sight back after I came out of a coma. I remember popping out of bed thinking, I can't do this to my [00:04:00] kids.
I need to be at home. I can't, I've never been away from them for more than one night. It was the lockdown. Covid, lockdown, so there was no visitors. It's coming up to Christmas, I really wanted to be home, but there was a long waiting list to go to the Rehabilitation Hospital at Hayward Teeth and I would have been in hospital for nine months if I'd stayed in hospital, but my husband and brother fought to get me out.
So I came home just before Christmas and Community NHS team came out to me every day. But that was the start of my recovery, just being able to sleep and rest. I think in hospital, it's impossible to get any rest. I wasn't allowed the home around me. There was people, people in the next bed hallucinating.
No peace and quiet. So when I [00:05:00] got home, well, I just felt like I could sleep. That's what I needed the most. When you're in hospital, Try doing tests on you to see the extent of your brain strength. You're not at that stage ready to do any tests. I think I was very rude to the nursing staff about being occupationally about doing those tests.
I came home and on the condition that I would except a place at a neuro rehab centre. So they managed to get, the NHS managed to get funding from the council for me to go to a neurological rehab centre run by the Disabilities Trust, and that was in just outside of Horsham. I had Christmas at home and then I went to a neuro rehab centre.
So that was a bit of a gift. I don't know whether this is a sign of how stressed I was at the [00:06:00] time because I was in beautiful Sussex countryside and had access to doing art therapy, singing. Neuroplasticity was a large part of therapy and I think actually that was a bit of a gift, being able to do neuroplasticity because you understand more about your brain, literally rewiring the brain.
Speech therapy. Because I had to learn to walk, talk, all of those things again. My memory lost Permanent. It's improved a lot more than it was, but I think the neuroplasty really did make a massive difference. I painted prolifically. Um, I've never painted before in my life and just having that opportunity to paint was Just something I never thought I'd enjoy so much as I did.
I could spend hours painting and then being able to walk in the countryside. I don't think the staff expected that. They'd say, [00:07:00] oh yes, your assistant will take you for a walk. That'd be 50 metres around the building. It was like, uh, no, I want to go, I want to do a proper walk. So they had to get a bungalow, my own bungalow on the site.
Um, right. Therapy that I needed, the fresh air. I know the staff had concerns about going out and about and being safe and being able to find things. Not many brain injury patients, they said, could ever find the car or be able to go out by themselves and they used to think they were stumbling back by myself.
But yes, I actually look back at that time and think, it was really quite difficult. An enjoyable experience. I don't think many people ever say that about a neurological rehabilitation centre, but just having that time to do those lovely activities out in the fresh air was, was inspiring and it gave me the rest that I needed.
That's [00:08:00] an incredible story, I have to say. Was it lockdown when you were in your bungalow? So, they had strict Covid testing, and for your family to come they had to do it. provided evidence to have done the test, but because I was in the bungalow and they didn't have to go into the neuro rehab center, they could come as long as they're tested.
But I did get, because that was one of the conditions for me, and it's really important to see my children to have husband. I have some normality. I think sometimes people can feel quite institutionalized. Yeah. and just let themselves go. I think that's a bit of a myth that neurological rehab centres, people think it ended my care and just have hope.
And so having normality was a really important, my family were really important part to my recovery. I met some of the staff were fantastic, , as well as the NHS, I met along the way. [00:09:00] I owe them so much, what just really Inspiring and yeah, the care was excellent. I just wish that people could have same access to neuro rehab I think access to Rehabilitation varies depending on where you live
Jon: Well,
I was gonna say it's a bit of a lottery, isn't it?
Emma: Yes, and then and then I find out so when I go to the doctor There's different dropping groups for Aphasia, I find out that some people have had no access to speech therapy. Some people have access to a couple of sessions. Lots of people have to pay when they don't have, you know, it's financial struggle anyway, and then they have to pay for themselves to go to, you know, therapy.
Speech therapy. So I find I've been really lucky with the access to therapy I've had, and the fact that I've had media access I do [00:10:00] think has helped with my speech. I still have some problems. I think the extent of the range where I had it would be impossible not to have any side effects, but I do count myself lucky.
When I left the neuro rehab centre. So I came home and I started my speech therapist said, mention the dropping group in home. And that became a lifeline of getting back to some normality because there's a gap in time when you're just left to get on with things and the isolation that you feel as part of that, it's hard enough trying to get to it.
It takes all your might trying to get to the dropping group for that in itself. It helps with your rehabilitation, makes you more mobile, like you go through, but when you get there, everybody has aphasia. And you can [00:11:00] relax because you don't have to explain to people about your situation. Why you can't find the words.
And at those groups you'll find there is a lot of communication that takes place, you know, in a variety of different ways and there's a lot of warmth and a lot of humour. So you find it's like having a family in a time of need when you need people, when you find that you're losing friends because people don't understand what you've been through.
There is a lot of myths about brain injuries that people get scared of. They get scared of talking to you. I think people think brain injuries, they automatically think split personalities. They think that you literally have a bad temper, get frustrated when you can't find the words, they finish the word, everything for you.
And so at the group, it's just like a safe haven where you can go and you can try and talk as much as you want. You don't have to be there at the start or finish. No one remembers anyone's name. [00:12:00] And so that's the lovely thing is that there isn't the embarrassment that comes with it. And that's, that saw me through a period of time when I was out of work, I lost my job, and I felt increasingly isolated and that became a lifeline to me.
Jon: The group you're talking about is presumably was, was Colin's group. Was that, say, Aphasia? Yes, Von Ho. Yeah, yeah. So You got more involved with the running of the group. Is that right? How did that work?
Emma: My NHS speech therapist who introduced me to the group, she recommended that I do some befriending work in the community.
So I used to go to people that had strokes in the local community that couldn't get out of the house. So a lifeline for them, I'd help with the shopping, I just Just go for a conversation with them, it became like a [00:13:00] lifeline for them and I used to go to the whole group just socially. I was back at work, I was looking to reduce my hours and get rid of commuting to London.
As you know, neuro fatigue remains a problem and so It was just exhausting traveling to London. And so I saw the job for SafeAsia come up with 10 minutes away from the closing day. It has all the HR skills and safeguarding skills that I knew I had. And I thought that would be a dream come true. All the skills that I could offer for an alternate charity that I really passionately believe in and giving people the same access.
To these groups throughout the country. So we're trying to grow the groups so people can have that support in their local community. Hmm. And so it is all run by peer [00:14:00] leaders. All the groups are run by peer leaders that have aphasia and that's what makes it unique. It's not run by, we have connections with the NHS speech therapist who were parents group.
The group is led. by a peer leader that has aphasia. Volunteers have aphasia. Some of the volunteers don't, but that's what makes the difference. The people feel highly supported. The people are in the same, all in the same situation. Yeah. They can get support. Yeah. Yes. It's quite important, isn't it? And obviously Colin's worked that out, hasn't he?
He's worked out when I'm talking to Colin about this. He obviously realizes that if you've got people with aphasia as well, it's not. somebody with a charity running something. Like, quite often it is, isn't it? Yeah, sometimes you feel, you feel that when you go, you feel that there's like, either medical intervention where people try to correct your speech, [00:15:00] and so what we do at the drop in groups is not speech language therapy in the fact that we're correcting people.
We, it's just an informal drop in where people can build their communication skills in small groups. over a coffee and cake. So it's not, it's not medical intervention and it's by people that understand first hand. So it's not someone thinking, Oh, if I was in your shoes, I would understand. It's someone that no one understands anyone better than someone that's been through the same situation.
Yeah. So do you, do you travel to the other groups as part of your job? Yes, I do. So at the moment I've only been doing the postings. October. So yes, I've been to all the groups in Sussex, um, and I'm also looking to get more volunteers into those groups. [00:16:00] Um, if anyone wants to volunteer, they can get in touch, but I'm also looking at going to all the other groups and we've got other groups throughout the country.
And we're looking at starting new groups and building those connections with them. The speech therapists who don't have a lot of time on their hands. Time is precious and so saying to them, look we have these groups and this can provide an excellent pathway to your service users in the community.
Please refer them on, come along to the group, the first session with them and introduce them to the group. So then they've got that. that pathway of knowing that they're supported rather than just having one session, two sessions and then they're just left by themselves to get along with it. Yeah, that's kind of happened to me.
I had six sessions and that was that. Very, I mean, I have no problem, the speech therapists [00:17:00] themselves were brilliant but they've got, they had sort of signed me off. Yeah, I did ask for some more. I did get some more about a year later. I actually requested some, but they're under pressure themselves, aren't they?
I know this. And then aphasia is complex as well because, so it affects people's writing, reading, and speech in different ways. And so when you're, you're talking, having that speech therapy session start with it, no one's looking at your writing, are they? Or saying, how can we help with that? It's very immediate.
And so you're left to kind of address all those problems that you're left with yourself. Fortunately my wife was a great help on that, that front. She understood what was going on quite quickly, or very quickly, so she carried on. But quite shocking talking the other day about the fact that some people have no [00:18:00] speech therapy at all.
Do you know I'm finding out more and more from going to these meetings or people at the drop ins that actually It's very common that people don't have access to any speech therapist. I would have thought that's, you know, almost, that would be something, the first thing that anybody would look at. It seems absolutely crazy to me, and then there's completely different access to services depending on whether you had a brain injury or whether you had a stroke.
Yeah. And I think because I was, I was acute. I had an acute brain injury. I had access. If it wasn't so acute, I wouldn't have had access to any services. This is interesting because, well, I had a bleed on my brain, but it was quite, it stopped quite quickly. So I don't know where I fell in your assessment of whether I was I wasn't acute, obviously, because [00:19:00] I was in the hospital and then I came out again quite quickly.
But I don't know whether that helped me getting the speech therapy or whether it was just luck that I happened to be in the area that they had speech therapists who were available. I don't know. I don't know how it works. It's proven that having access to speech therapy as soon as possible, yeah, three months, makes a large amount of difference.
Absolutely, yeah, yeah, yeah. Yeah, it's, it's very sad that the funding for speech therapists. It's all quite there. No, no. Because speech therapists are excellent. I can tell by talking to them, though, they are well off their feet. Of course, they have other things, obviously, as I understand, it's about 40 percent of speech therapists work with children.
It seems like the funding is, it's predominantly For working with children [00:20:00] with starters stammerers. That's right. Yes. The other one actually is trying to understand why that isn't there with range patients or strokes when you think, well actually a lots of strokes happening younger and younger and these people are left with it.
Actually situation when, as the hospital told me when I was there, actually, sorry, patient brain three patients never work again. No. Um, and then you are left just. To deal with that. Yeah. And what that means. At whatever age you are, yeah. Yeah. When actually, surely funding for it, when the government talk about disabled people working, that surely has to be part of it.
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Emma: Well, if, well, let's move on to that because obviously your, your background is HR. One of the things that you just picked on, on that, I know a number of people who've had strokes. Uh, at, at very early 20s and 30s. Uh, and obviously they don't go spend the rest of their lives not being fulfilled. So I think the thing maybe needs to happen is that somebody, probably the government, needs to understand that there are people out there in, in a working age that could go back to work, but they're not allowed.
And so for whatever reason, it doesn't seem to fit with them. What's, what's your view on that
I personally think that there is a need for supported employment, and so they, the government should invest in supported employment services, where, where disabled people [00:22:00] can actually get support, looking for employment, and that they can help educate employers.
You have lots of employers that say they want inclusive these days, but understanding what that means is something else in practice. Yeah. Yeah. But to think that brain injury patients and stroke patients don't have a part to play in society or can't contribute towards in the workplace is Ridiculous, and if you see the levels of brain injury patients that never work again, that to me is very upsetting.
But I think the people that have, have had strokes or brain injuries, it's realising that the most important thing is having hope and realising that actually you are allowed adjustments in the workplace and that's part of every workplace should be, every employee should be able to get an occupational health referral with the adjustments they need for their job and that That [00:23:00] hopefully could see them back at work, and whereas that's not possible, they could either take ill health retirement, and I think a lot of people don't feel able to have that conversation.
But to know that ill health retirement is there for people, and that could financially help, is important. Where they can't go back to work. to their old job is also knowing that they have the right to reasonable alternatives, suitable alternatives for other roles that the organization might have. And I think it's important that people know these things are available to them rather than thinking, I can't go back to work.
So where do you think the, the blockage is there? Because you quite rightly pointed out all the things that are available but how do people get to know I think [00:24:00] education is a really important part of it because, so you can see these days neurodiversity is all the rage. Yeah, yeah. But it's understanding what we mean by neurodiversity.
And that includes bravery, truth, and strokes. And with all these workplaces talking about inclusion, embracing the whole range of neurodiversity, you need to understand what that means. Yeah. And that also covers brain injury and strokes. I think education in the workplace is the most, one of the most important things.
People are scared of brain injuries. I do honestly believe people are scared a bit. There's lots of misinformation. People worry about people having seizures and they think it makes them unsuitable to work. It doesn't. You know, most people that have epilepsy take medication for it. Hmm. Makes them quite safe to work.
Um, but I do think there's a lot of education [00:25:00] about stroke and brain injury patients that's not really out there. You mean for employers? Employers, yeah. Maybe that's because it's the age range of the people that have them. But I do think there is a need on education. Who does the educating? Well, we have access to work.
The service doesn't particularly work quite well because a lot of the time it just means that to access the service, it would take three to six months. So that's not really, a lot of people have lost a job by then. So, it is broken a little bit the system, but there is support available. Susan's advice offers some great help as well.
But there's fewer and fewer of those, aren't there? Yes. And so I do think there is a need for supported employment for stroke and brain injury patients. Yes. And some kind of form of advocacy is important. And the government has to look about the statistics, don't they, and think, well, actually, if [00:26:00] they want the same people to return to work, which they say they do, they need to look at the statistics and say, why are brain injury patients?
not returning to work and I don't think that's because they can't. They can't, yeah. No, exactly. And with aphasia, simple things can be put in place. Like, I remember going through a really embarrassing situation at work when, so for names, for me, um, similar names are difficult. So I mailed the wrong person with a very similar name and then, Then I had the embarrassment a bit going, the whole of the ethos here going data protection, when you think, well actually, it's not a data protection issue.
I can quite easily mail them and tell them to delete the message. But just a simple understanding, it's about having that open conversation with the employee and asking them what they need. It's not for the employee to come up with all the suggestions. [00:27:00] A person would know best about what they need.
Jon: Yeah, what I can do, what I can't do.
Emma: So I think it's really encouraging employers to have those open conversations with that person about what support they would like and what support they need.
Jon: What about, say, example, the Federation for Small Businesses as a, as a, just a group of people who look after employers? Why couldn't somebody like that produce have a, a course or, or a access for something like, so that, so that people with small, I'm think big businesses I think are difficult, difficult problem, but I think smaller businesses, and I mean people with up to, I don't know, 250 people,
Emma: people worry about the cost, don't they?
To their organization. Yeah. Having. Having disabled people working for them, but I do think education [00:28:00] is key because the cost of making adjustments, that's why it's called reasonable adjustments, it, it shouldn't always be a cost to the employee. There is help, access to work, but the government pay for those adjustments.
But I do think it is about reasonable adjustments. And when you look about reasonable adjustments to somebody with Aphasia, It's not necessarily talking costly adjustments. It's about giving someone time. It's about awareness for others, realizing you don't have to talk for somebody, they might just need time and awareness, just some kind of general awareness of how it affects the individual.
I don't think it necessarily means cost, which people get scared of, and I think they need to think of the benefits of being inclusive. And also society as a whole. What are we [00:29:00] saying about if people are ill, they no longer can function in our society? Uh, that's part of living in a caring society, isn't it?
Everyone has a health and ill health part of life, you know?
Jon: Yeah, and people who with a different sort of ill health will carry on working, won't they? Yeah. You know, heart problems or sorts of things that you can carry on working with. Yeah. But aphasia seems to be the one that you can't. One of the, what, brain injuries, shall we say, to be more precise, seems to be one of the things that is cut off from that sort of level of, I don't know, I don't know who's, I don't know there are, what the numbers are about people, sort of, of working age and not working age, with, with the problem, but that would be interesting to find out what that is.
Emma: Yes, I think it is very interesting, I think it's very high, but aphasia is one of those things that doesn't affect people's intelligence, [00:30:00] and the general population think if you have speech problems, or writing problems, that equates to your intelligence, your cognitive ability, and that's wrong.
Jon: Well, we know this, don't we? Yes! But, I mean, you've got a job. Colin's functioning very well with his, with his charity. We know it can be done, can we not?
Emma: Yes, it's just getting that awareness out there, so giving people more chances.
Jon: Sounds like it's a long road.
Emma: Yes, it is a long road, and that's one of the frustrations of going through this.
It seems like More support should be made available. And that's not talking just about, that's not talking about the NHS or what it means about Really talking in terms of Society we are talking about. Yeah, and society [00:31:00] is the expatriate.
Jon: You can't put it all on the NHS.
Emma: No, I don't actually. I'm pleased with the NHS, the support I've had, because the one thing the NHS has had is the medical understanding of it.
I've had fantastic support from them. It's really about general society and the lack of understanding and awareness. Yeah.
Jon: Which is what we're trying to do between us.
Emma: Let's hope so.
Jon: Well, because I've talked to you and I've talked to a couple of other people recently, I'm thinking that this, this podcast may take a bit of a turn and go towards what we've been talking about is as to how we get people to understand that there is, there are some people out there that can perfectly fit into the working life.
Emma: I think just giving people. Brain Injury and Strokes. Hope, empowering yeah. Because they're written off quite a lot. Um, Hope [00:32:00] is so powerful. I just remember in the rehab unit, how the guy in the bungalow next door to me, he had a stroke. And just as he was leaving, I was telling him that they told me that I was on the middle step, and I was thinking he would carve it the frog, and he, and he told me they, they told him he was on the bottom step.
Oh god. Just, and that's how he, he, he'd been through rehabilitation, he was leaving to go back to work, and you think is that? Inspiring for somebody that has to continue with their life. With that whole approach to looking at rehabilitation and back into community has to come with some hope and that's the one thing I want people to feel that they have a say to is that you do have hope you should have hope you know you might have a slightly different life but [00:33:00] it's not to say that you can't continue and you don't have a part to play in society.
Jon: Well that's great. We'll put that on your promotion a little bit.
Emma: Thank you.
Jon: Because I think that's the sort of thing we need to push out, as is also from somebody who's had all the problems as well, not somebody who's just in the subject or whatever it might be.
Emma: Yeah, I think it's a really important thing that you're doing, because it's, it's, it's helping people with aphasia.
looking at examples of other people and that is lovely for them, but it's also educating the wider population.
Jon: Yeah, that's the plan, but it's a, you know, it's hard, it's hard going, I have to, I have to be honest with you, to keep things, you know, ticking over.
Emma: It's the hardest thing, it's opening up access.
Jon: Yeah, exactly. Yeah, yeah, yeah. Which I'm doing slowly.
Emma: No, I think you're doing an [00:34:00] amazing job. It's really inspiring, honestly. Thank you. Well, I hope it inspires other people as well.
Jon: Right, well, thank you very much, Emma. for listening. It's fantastic to hear your story, and also your views on what we could do better.
Emma: So, thank you very much, and I hope all goes well in the new year. Yeah, take care. Bye bye. Bye.
Jon (2): 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 s a y aphasia, or one word, dot org, or the aphasia page of nhs. uk.
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