In this insightful interview, Shaan speaks with Amanda, the Hospital’s Patient Experience and Safety Officer. Shaan conducts the interview using an EyeGaze system, with oral historian Maxine reading his questions aloud at his request. Marking nearly 35 years at the RHN, Amanda shares stories from her long career – from the early days of specialist technology wards to meaningful outings at concerts and dog races. The conversation explores how Amanda’s own health journey shifted her path from nursing to patient advocacy, giving her a unique perspective on the frustrations and triumphs of long-term care. Together, they reflect on the importance of hearing the patient’s voice, the resilience of families, and the mutual respect between staff and residents that defines life at the Hospital.
Part 1: 6min 27sec
In Part 1, Amanda reflects on her 35-year history at the RHN, beginning with the opening of the Andrew Reed Ward (now Leonora). She describes the early days of using specialist technology to help residents with profound disabilities regain control over their lives. Amanda shares touching memories of a resident with locked-in syndrome who used eye-gaze technology to navigate social life – including trips to the pub and the dog races – and recalls a memorable encounter between a resident and Rod Stewart at a concert. These stories highlight the Hospital’s long-standing mission to ensure that every resident has a voice and a life beyond the ward.
Transcript
Part 2: 9min 15sec
In Part 2, Amanda discusses how her own diagnosis influenced her transition from ward nursing to a career in Quality Assurance and advocacy. She speaks candidly about the physical and emotional frustrations of her own health challenges and how they helped her empathise with the residents she serves. The conversation also covers the difficulties of maintaining a work-life balance over three decades and the sense of privilege she feels working at the RHN. The interview concludes with Amanda praising Shaan’s own sense of justice and his determination to make the hospital better for everyone.
Transcript
Transcript – Part 1
Maxine [reading Shaan’s typed words]
From my perspective, this interview is about telling a story of those others. It is a matter of historical record because we have limited insight into hospital life. So, what we have to say is essential. Could you start by telling us about your role at the hospital?
Amanda
So, I’ve had a number of roles over the years. The current role is – I’m the patient experience and safety officer. Mainly that’s about supporting individuals to share their information, to share any feedback, to become involved in any projects – especially things with the idea of improving services here – and to ensure that their voice is heard, really. That, of course, includes concerns and complaints, but it’s far more than that. It’s just about hearing exactly what people want and getting them involved as possible.
Maxine [reading Shaan’s typed words]
What patient stories have touched you down the years?
Amanda
Gosh, there’s been so many. So, I actually realised, in thinking about this,…so I was thinking about when did I come, I actually realised I’m coming up to my 35th anniversary of when I first started. And I’ve been here in various forms and roles. So, I first came here 35 years ago, working on what is now Leonora, where you are, which is what used to be Andrew Reed Ward. And that was to open up a specialist ward for individuals that were very aware and very able to direct their care, much like yourself, but needed assistance of staff, but also technology. So, it was a very new ward. So that was my first experience here. So, there were a lot of individuals there that had such profound disabilities but were really taking control and were really enjoying their lives and having a lot of input with what was happening on the ward and what they did. And I think one individual from then had a really big impact. He was a gentleman who had locked-in syndrome. So, he communicated in a similar way to you. So, he had a device, he was using it by eye gaze, but he used that to be very clear about the things that he wanted to do, the things he didn’t want to do, and he loved being out at the pub. He loved being out at the dog races. We used to go to the pub, and he wasn’t able to swallow, but he still loved the sensation of having a drink. And all of that was cleared for the doctors. He was fine clinically to have one, so we used to go to the pub, and we used to have a syringe and we’d sit there, and he’d like to have it in the same kind of way as if you were having a chat and having a sip here and there. So, we would do it to be as, so that it would seem as socially normal as possible. And yeah, so I think he was definitely the first person that really had an impact on me and made me realise that he could control so much. His life had changed hugely, but he was enjoying life, he was controlling aspects of it, and I think that led me… so I was then working as a staff nurse, but I think that led me down the path where I am now as to helping individuals to make sure that their voice is heard really.
Maxine [reading Shaan’s typed words]
More examples.
Amanda
I knew it was going to be a tricky one from the smiles that were going! Gosh, it’s so hard to think of all the individuals. So, I said that I came to work in Andrew Reed. So that was as a Senior Staff Nurse. I was there for about a year before I had… I’ve got some underlying health issues, so with my muscles, and couldn’t stay working on the ward environment. So, while I was off sick, I started working in what used to be Quality Assurance – it’s now Patient Safety and Quality – and also doing some work with the Leisure and Family Services, which used to be called Patient Activity. So, during those times, I was spending quite a lot of time going out on trips. Again, there was more visits to the pub. We had… so we had some, again, some really strong characters that I would take out. I say ‘take out’ – we would go out together really. It would feel such a great opportunity. We would go to concerts, we would go to the dog racing, we went to all kinds of theatre shows. And also with the outings, I just remembered a gentleman who used to love going to concerts and we went to the Rod Stewart concert once and he ended up having a discussion with Rod Stewart who also then spoke to me. And the guy was so happy about that. He was a really strong character, and I think Rod Stewart could pick up on that straight away and they had a great conversation together. He was somebody I really enjoyed going out on trips with as well.
From my perspective, this interview is about telling a story of those others. It is a matter of historical record because we have limited insight into hospital life. So, what we have to say is essential. Could you start by telling us about your role at the hospital?
Amanda
So, I’ve had a number of roles over the years. The current role is – I’m the patient experience and safety officer. Mainly that’s about supporting individuals to share their information, to share any feedback, to become involved in any projects – especially things with the idea of improving services here – and to ensure that their voice is heard, really. That, of course, includes concerns and complaints, but it’s far more than that. It’s just about hearing exactly what people want and getting them involved as possible.
Maxine [reading Shaan’s typed words]
What patient stories have touched you down the years?
Amanda
Gosh, there’s been so many. So, I actually realised, in thinking about this,…so I was thinking about when did I come, I actually realised I’m coming up to my 35th anniversary of when I first started. And I’ve been here in various forms and roles. So, I first came here 35 years ago, working on what is now Leonora, where you are, which is what used to be Andrew Reed Ward. And that was to open up a specialist ward for individuals that were very aware and very able to direct their care, much like yourself, but needed assistance of staff, but also technology. So, it was a very new ward. So that was my first experience here. So, there were a lot of individuals there that had such profound disabilities but were really taking control and were really enjoying their lives and having a lot of input with what was happening on the ward and what they did. And I think one individual from then had a really big impact. He was a gentleman who had locked-in syndrome. So, he communicated in a similar way to you. So, he had a device, he was using it by eye gaze, but he used that to be very clear about the things that he wanted to do, the things he didn’t want to do, and he loved being out at the pub. He loved being out at the dog races. We used to go to the pub, and he wasn’t able to swallow, but he still loved the sensation of having a drink. And all of that was cleared for the doctors. He was fine clinically to have one, so we used to go to the pub, and we used to have a syringe and we’d sit there, and he’d like to have it in the same kind of way as if you were having a chat and having a sip here and there. So, we would do it to be as, so that it would seem as socially normal as possible. And yeah, so I think he was definitely the first person that really had an impact on me and made me realise that he could control so much. His life had changed hugely, but he was enjoying life, he was controlling aspects of it, and I think that led me… so I was then working as a staff nurse, but I think that led me down the path where I am now as to helping individuals to make sure that their voice is heard really.
Maxine [reading Shaan’s typed words]
More examples.
Amanda
I knew it was going to be a tricky one from the smiles that were going! Gosh, it’s so hard to think of all the individuals. So, I said that I came to work in Andrew Reed. So that was as a Senior Staff Nurse. I was there for about a year before I had… I’ve got some underlying health issues, so with my muscles, and couldn’t stay working on the ward environment. So, while I was off sick, I started working in what used to be Quality Assurance – it’s now Patient Safety and Quality – and also doing some work with the Leisure and Family Services, which used to be called Patient Activity. So, during those times, I was spending quite a lot of time going out on trips. Again, there was more visits to the pub. We had… so we had some, again, some really strong characters that I would take out. I say ‘take out’ – we would go out together really. It would feel such a great opportunity. We would go to concerts, we would go to the dog racing, we went to all kinds of theatre shows. And also with the outings, I just remembered a gentleman who used to love going to concerts and we went to the Rod Stewart concert once and he ended up having a discussion with Rod Stewart who also then spoke to me. And the guy was so happy about that. He was a really strong character, and I think Rod Stewart could pick up on that straight away and they had a great conversation together. He was somebody I really enjoyed going out on trips with as well.
Transcript – Part 2
Maxine [reading Shaan’s typed words]
Tell me of your health. How does it relate to your work? Does it influence how you think of your work and vice versa?
Amanda
When I was first working here, so I’d only been here about a year, and I had to have, so in theory, almost a year off sick. So, during that time, I couldn’t walk very much, but I didn’t want to stay at home. So, though I was off sick, I asked if there was something that I could do, maybe for a few hours. So, it was actually that situation that then… they suggested that I spend some time in the quality assurance department at first, because they wanted to think about ways to hear the voice of patients and residents more. And I had had some dealings with the team in there before and they knew that I was very interested in advocacy. So, they thought maybe I’d start thinking about ways in which we could maybe do a survey and start to get to know patients, residents, and get them more involved. So that was the very startings of patient experience. But that was before patient experience was a thing. So, if it hadn’t have been for that, I may not have got that specific opportunity. Well, I wouldn’t have got that exact opportunity, to then be part of the Quality Assurance team, which was really great, so that’s the first impact. It was quite a few years later… so, I think I got the actual diagnosis about 20 years ago. So, before that, they thought I had multiple sclerosis, but then I got diagnosis with – it’s quite rare – it’s called dermatomyositis. So, I have times when my arms and legs are weak. I do have times when my swallowing is weak. I’m mostly these days really good. I think I’ve just got stronger and stronger. It’s not what they expected. I suppose it’s made me think about the expectation – was that I would probably need a wheelchair at some point. I’m still expected that I will still at some point, but I think I’ve done so well in the last 20 odd years that that’s maybe unlikely now. So, I suppose that’s made me think a lot more about the things that might be important to me and maybe that’s helped me try a little harder and understand a little harder when we try and empathise. I think all of us will try that, but it’s very hard if you haven’t been in that situation. I still haven’t, so I’m still not going to fully understand the situation. But I think, if we maybe think through and understand that could happen, I think maybe that helps more. And also, just the physical, just the frustration when I was physically unable to do the things that I want to – in that small area – then it gives you a sight insight as to how frustrating life may be if you can’t do all of the things that you want. So, I think maybe in some ways… but I think really for work it’s only impacted me positively really, as strange as that may seem, because it’s led me down the direction that I’ve gone.
Maxine [reading Shaan’s typed words]
I know you spend a lot of time working. Do you have a life-work balance?
Amanda
I’ve not always been great at that. So, as you know, I’ve got two children who are grown up. So, when they were younger, I had to work around them. So that’s one of the reasons why my jobs have changed as well. So, originally it was due to my health, and then I needed to change my hours and be flexible with my hours for the children. So, I did have to keep to my hours a little better then… got into some terrible habits, as I know you know, and be here all hours once they got older and didn’t need me. My son and his wife and their baby have just moved in. So, I’m really going to be trying to get back into trying to work with my hours, and to go home and to be able to spend time with them and the baby, rather than stay here till late in the evening as I have a tendency to do.
Maxine [reading Shaan’s typed words]
Over the years, has that had a cost?
Amanda
I would say not to me, maybe to my husband! He’s just accepted it. But I would say choices I’ve made, I’ve made them myself. So, nobody’s ever said, you need to stay and do this. It’s pressures I’ve put on myself, choices I’ve made because it worked for me. So, I think I continued doing those kind of hours because it worked for me. I would feel that I’ve done my job better. I wouldn’t come back to lots of work after a couple of days off and that kind of thing.
Maxine [reading Shaan’s typed words]
And you’re obviously so passionate about what you do. What has it meant to you?
Amanda
I guess when I think about working here, certainly when I talk about working here, I generally talk and think about – and this sounds really corny – but you know that I’m not generally like that, but it just feels like it’s been such a privilege to work alongside and see such strengths of… not just strength when it comes to resilience, but also strength of character, not just from the patients and the residents here, but their families. Obviously, people can find themselves in really difficult situations and situations that they wouldn’t have expected to be in. And I think that they can find parts of themselves from deep within that they didn’t know were there. So, there’s dimensions to people’s characters and their strengths that are very different to what you can find anywhere else. Some quite incredible people. And then that will also go, of course, from the staff, people who have been here… there’s many people that have been here far longer than I’ve been here. And again, have such great passion for the place. So yeah, I would say it definitely feels like it’s been a real privilege.
Maxine [reading Shaan’s typed words]
What do you see of me?
Amanda
I see that strength. I see that determination. I also see a real sense of justice, not just for yourself and those that you love, but for others as well. Which is really important, and I think that makes an impact. And I know that that drives you to share your opinions. And I know that is so often not just to make things better for you, but to make things better for other people. And I have come across that before. There are certainly other individuals who very much feel that they want to not just get things better for themselves, but for other people. But I think you do it in spades!
Maxine [reading Shaan’s typed words]
That is it. Thank you.
Amanda
Done. There were some tough ones there! I wasn’t expecting.
Tell me of your health. How does it relate to your work? Does it influence how you think of your work and vice versa?
Amanda
When I was first working here, so I’d only been here about a year, and I had to have, so in theory, almost a year off sick. So, during that time, I couldn’t walk very much, but I didn’t want to stay at home. So, though I was off sick, I asked if there was something that I could do, maybe for a few hours. So, it was actually that situation that then… they suggested that I spend some time in the quality assurance department at first, because they wanted to think about ways to hear the voice of patients and residents more. And I had had some dealings with the team in there before and they knew that I was very interested in advocacy. So, they thought maybe I’d start thinking about ways in which we could maybe do a survey and start to get to know patients, residents, and get them more involved. So that was the very startings of patient experience. But that was before patient experience was a thing. So, if it hadn’t have been for that, I may not have got that specific opportunity. Well, I wouldn’t have got that exact opportunity, to then be part of the Quality Assurance team, which was really great, so that’s the first impact. It was quite a few years later… so, I think I got the actual diagnosis about 20 years ago. So, before that, they thought I had multiple sclerosis, but then I got diagnosis with – it’s quite rare – it’s called dermatomyositis. So, I have times when my arms and legs are weak. I do have times when my swallowing is weak. I’m mostly these days really good. I think I’ve just got stronger and stronger. It’s not what they expected. I suppose it’s made me think about the expectation – was that I would probably need a wheelchair at some point. I’m still expected that I will still at some point, but I think I’ve done so well in the last 20 odd years that that’s maybe unlikely now. So, I suppose that’s made me think a lot more about the things that might be important to me and maybe that’s helped me try a little harder and understand a little harder when we try and empathise. I think all of us will try that, but it’s very hard if you haven’t been in that situation. I still haven’t, so I’m still not going to fully understand the situation. But I think, if we maybe think through and understand that could happen, I think maybe that helps more. And also, just the physical, just the frustration when I was physically unable to do the things that I want to – in that small area – then it gives you a sight insight as to how frustrating life may be if you can’t do all of the things that you want. So, I think maybe in some ways… but I think really for work it’s only impacted me positively really, as strange as that may seem, because it’s led me down the direction that I’ve gone.
Maxine [reading Shaan’s typed words]
I know you spend a lot of time working. Do you have a life-work balance?
Amanda
I’ve not always been great at that. So, as you know, I’ve got two children who are grown up. So, when they were younger, I had to work around them. So that’s one of the reasons why my jobs have changed as well. So, originally it was due to my health, and then I needed to change my hours and be flexible with my hours for the children. So, I did have to keep to my hours a little better then… got into some terrible habits, as I know you know, and be here all hours once they got older and didn’t need me. My son and his wife and their baby have just moved in. So, I’m really going to be trying to get back into trying to work with my hours, and to go home and to be able to spend time with them and the baby, rather than stay here till late in the evening as I have a tendency to do.
Maxine [reading Shaan’s typed words]
Over the years, has that had a cost?
Amanda
I would say not to me, maybe to my husband! He’s just accepted it. But I would say choices I’ve made, I’ve made them myself. So, nobody’s ever said, you need to stay and do this. It’s pressures I’ve put on myself, choices I’ve made because it worked for me. So, I think I continued doing those kind of hours because it worked for me. I would feel that I’ve done my job better. I wouldn’t come back to lots of work after a couple of days off and that kind of thing.
Maxine [reading Shaan’s typed words]
And you’re obviously so passionate about what you do. What has it meant to you?
Amanda
I guess when I think about working here, certainly when I talk about working here, I generally talk and think about – and this sounds really corny – but you know that I’m not generally like that, but it just feels like it’s been such a privilege to work alongside and see such strengths of… not just strength when it comes to resilience, but also strength of character, not just from the patients and the residents here, but their families. Obviously, people can find themselves in really difficult situations and situations that they wouldn’t have expected to be in. And I think that they can find parts of themselves from deep within that they didn’t know were there. So, there’s dimensions to people’s characters and their strengths that are very different to what you can find anywhere else. Some quite incredible people. And then that will also go, of course, from the staff, people who have been here… there’s many people that have been here far longer than I’ve been here. And again, have such great passion for the place. So yeah, I would say it definitely feels like it’s been a real privilege.
Maxine [reading Shaan’s typed words]
What do you see of me?
Amanda
I see that strength. I see that determination. I also see a real sense of justice, not just for yourself and those that you love, but for others as well. Which is really important, and I think that makes an impact. And I know that that drives you to share your opinions. And I know that is so often not just to make things better for you, but to make things better for other people. And I have come across that before. There are certainly other individuals who very much feel that they want to not just get things better for themselves, but for other people. But I think you do it in spades!
Maxine [reading Shaan’s typed words]
That is it. Thank you.
Amanda
Done. There were some tough ones there! I wasn’t expecting.