Show Notes
Kate: So we're on episode four now of this podcast, which is called Realistic Medicine. What? Why? How? And we're really be lucky today to have Norma Davidson with us, who is a resident here in the Highlands and has been a patient and a member of the community and is a really prominent member of the Highland Senior Citizens Network. And so Norma is going to kindly share some of her story with us today, which will be really helpful. So, welcome, Norma. Thanks so much for joining us. Tell me a little bit about yourself.
Norma: Well, first of all, you've already introduced what my name is, so the first is I grew up in the Highlands of Scotland, all over, but I ran away from home when I was 14 and pretended I was 16 and joined the QARANC, Queen Alexandra's Royal Army Nursing Corps in England. And from there I took ill when I was in the army and they had to do the very first operation on me that I'd ever had in my life, where they found I suffered from anaphylactic reactions to many anesthetic drugs. So under British law, you couldn't be in an armed forces with that because you'd be a danger. So I threw a dart into an atlas and it landed in a country called Rhodesia. So I packed up everything and just went to Africa. When I got there, I joined their military, which was combined forces, but carried on with nursing training and we would work with casualties, evacuating people out. I learned to fly an airplane and land it in case the pilots got shot, because this was a wartorn country. And this carried on to about the late 1970s. And then in 1979, I hit a landmine where everything changed because it was then found I became an incomplete quadriplegic. After everything settled down, I can move sometimes. I've got no sensation in a lot of parts of me. Every time I take an anaphylactic reaction, it causes swelling in the body and when that swells up, it also seems to cause problems in my spine as well. And it can take me ages to start getting movement back after each episode has gone, been cleared and I'm out of ICU. Can take months. I eventually got transferred back to Britain in 1986 and that was when local NHS and things got involved, because, yes, I was an incomplete quadriplegic and it's a CTC five. But I shouldn't be defined. That doesn't define me, who I am, it's what I can achieve. But then I was taking anaphylactic reactions to everything around me. I was in one hospital for 90 times in one year with anaphylactic reactions. So it was decided they were going to try and work out what was causing this. And they realized that I had what was called hereditary idiopathic and acquired angioedema, which all turned into anaphylactic reactions. The physical side of me, the disability, I can cope with. But that's the side that takes over everything, because you go to hospital, you'll take a reaction when you go through the door. Doesn't matter what you were going in for, they deal with the reaction get you out, realize, oh, we haven't done tests, we haven't done anything. I had a fantastic doctor later on who then took over and said, we've got to work a plan because I was falling through cracks. And we then started with a different way of keeping me all together. And that's just roughly, in a nutshell, probably 40 years all come together.
Kate: Wow. What a fascinating journey you've had. And then what do you enjoy doing in life now back in the Highlands?
Norma: Anything that, as you can see, I like activities, I like action. Doesn't matter what it is. I like to be a dare devil. I've always been a dare devil. So even now, even in my wheelchair and everything else, as people in the Highland Senior Citizens Network know, one of their staff is traumatized. When a few years ago, with NHS, we had people from NHS and the government, but I decided I wanted to go to the skate park in my wheelchair and they did a film for NHS and I did it. And I finally got to the very top of the park, which nobody's ever done in the wheelchair, but they forgot to pull the camera through back, to stop me hitting the camera through. I pushed my wheelchair around to fly off the top and crash landed on the floor. And I was just so excited going yes, yes. But everybody was running, thinking, she's broke her neck proper this time. So, yes, I still like to, even if it's the tiniest thing in the house. And I can't move that day as long as I've done something that I can do, I've done something.
Kate: Yeah. That's amazing. You're braver than me, that's for sure. You don't catch me in skate park.
Norma: I don't do that now. But that was about four years ago, was the last time we were out.
Kate: So tell me a wee bit about what's most important to you, particularly from the delivery of your health and your care. What's important for you?
Norma: Well, the main part, I think the whole lot would come under one heading of this is my reality and keeping it real in my care. To me, it's got to feel you've got sufficient time with the carers or the doctor, whoever's dealing with you, that they see you not as the problem, but they see you as the person. And we then are able to work forward individually to try and work on what needs to be done. And that is the most important thing of all, is that we're seen because often you're not you're just you're a number.
Kate: Yeah. And you're obviously very experienced and eloquent in the way you get yourself across and confident, what advice would you give people who maybe are new coming into healthcare? I meet a lot of patients and people coming into the system, and they've maybe been previously healthy and they've had a bad diagnosis and they feel so worried about asking questions and about asking to be seen as an individual. So I'm on a bit of a crusade with my colleagues and there is a kind of global movement trying to make sure that health care people are asking, like, what's important to you? What's important for you, your goals for life and for us, you've had any kind of treatment, but how do you think we get our patients and the people using our services to feel like, empowered, to be as active as you are?
Norma: Well, to start with, what you see now is what has taken years to finally get to this. When I first became physically disabled and everything, probably for the first 20 years, I wasn't seen, I wouldn't speak out, I would be very quiet and fell through many, many cracks. And you felt you couldn't speak to the doctors, they had to make the decisions, they had to do this and you just had to go along with it. What made the big difference for me was when I finally got to talk to a doctor. Where they actually didn't have their back to you while they were talking to you. Because normally they're on a computer or they're writing in a book where they're actually facing you and make you feel. I can actually talk to this person because they're facing you. They're looking at you and you think. Oh. Maybe I can talk about this problem. Because when you go to the doctors, you go in and the doctors are often very busy because they've had another patient, so they're finishing up the notes on that, or they're busy trying to sort your notes and then they ask you with their back to you, what's the problem? And you think, Well, I've got this, but I don't know, should I talk to you about that? I should have talked about this. Like now when somebody's looking at you, you can open up and say something and then the conversation can start. Until then, you just sit there and say, oh, well, it's this, and get out as quick as you can because you're so uncomfortable. And yet you think, oh, I should have said this, I should have said that.
Kate: You almost need to go in with a script. I'm a doctor, but I've also been a patient, and I totally feel that feeling of almost like panic and pressure to get the right words out in time. And obviously, we're like, GP appointments are so short and I don't know a GP who wouldn't love to have more time to spend with patients. And I lived in Australia for a year, and when I was there, I went to a GP there and it was a very different experience because a lot of the healthcare there is private. So they had a longer appointment and I went in and I immediately was like, this is the problem, this is the problem. And they were like, oh, so you're Scottish? Like, what's brought you here and where are you working and what do you do? And I was like, oh, I'm working in this hospital, but this is what's happening, this is what I'd like. And I felt that pressure to get out quickly and it was so different and it was quite unnerving, almost, to have that different experience. But I came away from that thinking, wouldn't it be wonderful if we had more time? But with the time we have, I'm sure that there's ways we could use it better.
Norma: Because you end up panicked in the doctor's surgery that you find you've missed out half of what the original reason you went? Because the doctors are assessing us when we come in. But what people tend to forget, is that we are also assessing the doctor when we come in and if the doctor is flustered or they look like they're really busy, you try to quickly work out in your head in moments what's more important, because we're holding somebody up, somebody else may not get seen. And it's just all this pressure for everybody.
Kate: Yeah. And all this going on within your mind. Which maybe isn't visible either. You know. Because I'm sure if I went into consultation and the person I was chatting to had all these assumptions about how busy I was and stuff. If they told me. Then I would be able to say, Well, you're right. I am a bit busy today. But I'm really keen to give you as much time as possible or to say, Oh. No. I'm sorry, I'm giving you that impression. You know. Enabling everyone to be a bit more honest and speak up. I think is so important. And that's why there's a big drive at the moment, particularly to get patients to come kind of armed with some questions when they come to see clinicians. So to come and say, okay, you advised me to have a treatment, tell me what the benefits are, tell me what the risks are, tell me what other options are open to me and what would happen if I don't do any of this. Because it can be overwhelming to think up questions in the moment, can't it?
Norma: Very scary, because often you're overthinking it, because if you just got one bit of information, you're trying to process that, but overthink your next question, you think, that's actually not what I wanted to say. It's a two way street, though. That's the part that we're leading to. I think, in the UK particularly, it's always been the professionals and the people, but the two are speaking two totally different languages, we need to somehow speak the same language.
Kate: Yeah. And being okay with being totally honest and kind of vulnerable and saying, you're giving me the impression that you're too busy to deal with me, and saying that at the time, rather than it being something that lingers and gives someone a bad experience or not the right care that they're looking for.
Norma: Yes.
Kate: So I think that would definitely be one of my big takeaways. And as doctors and nurses, we can set the scene with that at the start of an appointment and if there's anything that's coming into your mind, feel free to stop me and ask me a question or clarify because we're really bad at speaking in jargon and that makes light of it.
Norma: Yes.
Kate: Norma, you've mentioned before to me, you showed me that you've got a lot of care plans at home with you. Can you tell us a little bit more about them?
Norma: Yes. So what happened was there was a wee bit of a problem with my care because I'm not a simple care package. I'm complicated one because of the physical disability, which is bad enough, but then with the added anaphylaxis to everything anybody's ever trying to do, whether it's a new drug or whether it's just put me in a ward with other people and they've sprayed something. So it's very complicated. But what happens is you get one doctor, especially if you're in hospital, and then that doctor, you go away, you come back and you're given a different doctor. Nobody's all in the same hymn sheet. So it did causes big problems. But I ended up eventually in an intensive care unit. My own specialist in our local hospital had sent me off to another hospital, but there had been lack of communication between the two hospitals and I had just come off a ventilator, so I wasn't able to speak. I was supposed to go into a private ward. The hospital had just finished. It was a Friday, that ward wasn't ready. So the patients had gone home from daycare where they had operations and they put me in there and put the blinds around me. But then everybody from there left at 4pm, hadn't told the ward where I was. Cleaners came along and locked that door. I had a drip in and tubes. And from Friday until Sunday, nobody knew I was there. Two hospitals, one said they sent me, one said they couldn't find me and I was found eventually on the Sunday, just through lack of communication, drips had run out. I couldn't press a bell because there was none at the bay and I couldn't speak. And that's when I survived that one. They didn't do what they were going to do in that hospital because there was such a good road, they sent me back to my original hospital. And that's when my specialist said, this must never happen again. We're going to have your own care plan. That will be carried with you everywhere and everybody must be able to communicate it, no matter whether I can speak or not. So that was where it started. And then from there it really became a start of excellence. This was well ahead of what they're doing now. There was no laptops and computers then, but my doctor said they felt this was coming and I would get lost in the system again. So we started where they sent us to their own hospital science lab. And he had written to them all of what was wrong with me, my condition, and he wanted it all printed out for me to take home with my family, go through it. And then a week later we'd have a discussion what we wanted to happen to me, where I was going to go with it, what hospital could do, how my home care would work. And that made the biggest difference in my life. It wouldn't work with everybody, but with me, because I like to be involved, it was great. You get your blood results. Well, to some people blood results mean nothing. But we worked out what my normal for me was. So even if it was in the normal range, but it was away at the normal range, and mine is normally down here, something's wrong we could be triggering. And so now all the blood tests are sent in paper form to my house, and I put it into graph form so a doctor sees it and they can actually see the spikes up where it is. And there's a little bar through my normal is. And it just helps everybody sort whatever treatment they need. And it usually stops an anaphylactic reaction happening in advance by knowing who we are, simple things like that. And yet it's complicated for some, but for me it works. It keeps me out of the hospital. They had the doctors collaborating with the specialists, they have the GP and the chemist all working together for me to try and find the right stuff. That was way back, as I said, but that now has born fruit now, especially with covid and everything, because they were all able to treat me at home without trying to get me to hospital anytime something happened. And that's the way I think should go. If patients had something with their own information on it's, a follow through, because your computers will only give you so much in it, it won't give you the whole truth.
Kate: I think a lot of chronic conditions, some of the more common chronic conditions like diabetes, people have actually made apps based on a similar thing that you're doing, which means that people have got complete ownership of their own care. Yes, but where we don't have that kind of thing is in people who've got rarer diseases living with Raise conditions, just like you are. And I feel like Norma. You could start your own tech platform.
Norma: I know they won't, but you will, because we even have our own ECG machine thing here that does this. And if there's any problem, it just gets printed off and the carers go down to the doctor with it and then they send it to the hospital and they work out a plan. My medications, when, as I was saying about the graphs, all the blood tests, each one is individual, the yellow is where I should be. And yet if they're out of that, then something's heading in a different direction for me personally works, but it's a collaboration and a communication between the patient and the doctors that they get it right in partnership. Too often it's separated, which you fall through cracks.
Kate: Yes. And that's like a lot of feedback that we get, is that different services aren't that good at talking to each other. Actually, for you, as the owner of your illness and your condition, your life, if you have control of the information, then it means you always know it's right and the people aren't getting it wrong and things aren't getting lost in translation. And we are, particularly through COVID there was a lot of movement to sort of empower people to do more of what you've done and making their own plan and particularly kind of anticipatory care planning. So thinking about things like if your condition worsened, where would you want to be and how would you want your care to be? But sometimes that was communicated badly or misunderstood and it came across as a conversation about death, which it didn't mean to be. But your example shows a really good example of how care planning helps you to live well. Would you agree with that?
Norma: Yes, because we did get an anticipated care plan. And good and bad, the very first one was terrible because it was done by a doctor that didn't even know me and didn't even know who I was, what I was. And it wasn't any of my wishes, it was just what they felt should happen to me if something should happen. And when I finally got a copy of it, I wasn't happy. But the specialist at the hospital looked at it and he wasn't happy. We said, no, no, we need to do it with you involved. So we rewrote a complete new one and it covers everything from, if I'm not well, do I get treated at home? The paramedics treat me here as best they can in communication with the hospital. Only if it gets very bad. Which hospital would I go to? Where would I go if carers were here? How much do carers get extra training so they can look after me at home? What do I want to happen? If it did come to end of life, what did I want happen? Would I be I've already got in mind and read letters that I don't believe in the Liverpool plan or as you said earlier, so they know I want treatment, but always look at my quality when I come back, but my qualities look different to what other people think my quality is. That's a big difference because to me, my qualities, if I can smile at somebody one day and they can smile back, that has been a great thing for me. It's not all about what I can get out there and do, it's what I can do here. Just for me and the person that's with us.
Kate: Yeah, absolutely. And that's where the care planning comes in, doesn't it? Because it includes what's important to you yes. And what you want to be able to do and that is completely different for different people.
Norma: Yes.
Kate: Well, that's really interesting. And then so tell me, I think we're going to get tight for time, actually. What do you want to tell me about it? Do you want to tell me about an experience of excellent care or something that could have been done better?
Norma: The excellent care was where I've just told about the doctors in the hospital that time, because it did that all set up for future.
Kate: Yes.
Norma: The terrible, the worst case that I've ever had either in a hospital setting and at home in the hospital setting, you're just a number and you get lost and forgotten. It's not the first hospital I got lost in. I got sent to the wrong hospital another time and it ended up with some poor person standing in a lift with me. Strapped to a trolley. A trolley upright. Because it only held two people and while they were pumping the bags. Because I was put into a hospital that didn't even have a doctor at that hospital and I took an anaphylactic reaction there, they had to get me down a steep road all the way to another hospital that had the ICU in it. That's where patients kind of get forgotten here in a care at home place, which was also bad care is where you don't get a choice about care companies or anything and NHS just pass it over to something where you've not given a choice, you're not told about it. And just one that I was with, they're no longer with. It was so bad they didn't even have I don't know what they called them. Was it PVG checks where they not one carer had had one of them and when it came to my medication, they would open the bottle of liquid once they weren't trained on medicine or we are not allowed to pour it into the cup. Take one swig or two. So eventually I got hold of the care inspectorate and that all changed, myself and other patients that were in that all but taken out back to NHS that's where it all falls apart everybody else makes decisions and there's no checking you need it to be a partnership where we're all helping each other. Yeah you were asking a question earlier about top advice I would give that might help just small little changes I did write a few thoughts down which there's just three main parts and it's just listening. Communication and information that was my three top ones to see that's the most important because from that to look at us as the individuals we are. We're not our diagnosis and we're another human being here and then leave us feeling that it's okay to ask the questions because often we feel it's not okay to ask it leave us feeling we can ask the questions about our condition. Our care and what we do or don't want to happen and lastly in listening with us to give us value that yes. We may be the patient that's to be supported but we want to be in the center of all the decision making so it's partnership as well so that's really how I would say in a nutshell.
Kate: Yes that's amazing. And from the information side, what do you think? How could we better share the information with you?
Norma: With me particularly? I know a lot of people have these technology I'm not good with it unless somebody else is certain I still am a person who likes it in paper and speaking face to face so that then you can think better when you're facetoface but it's on technology you're spending all your life trying to figure out where to go or how to work it doctor surgery I think if they had more leaflets explaining what we can try and see a doctor surgeon telling people it is all keep to see these things but respecting each side I don't mean everybody demands that they want us to think it's got to be a partnership with all this together.
Kate: Yeah. That is agreed and I think that's like a great note to and also.
Norma: To show that we also need continuity because I have fallen through the cracks all the time where you get put into care you're coming out of hospital and it will be three weeks before a career will turn up because nobody told them but they did but they just got lost on the computer or they find that you're actually in the dead drawer and then they go to see oh. Is that person still alive? And they realize yeah. I'm not on the floor. I'm still alive and so the need to continue follow up yeah and I.
Kate: Think there's a lot of work being done around that at the moment about when people are discharged they should be discharged with a copy of their discharge letter in a way that they understand it, written in layman's terms because we can't be just writing doctor to doctor or doctor to nurse and missing out the person who is in the center of it. So there is a big movement towards that, but we've definitely got work to do. And even what you spoke to about you like a letter, and again, it's thinking about the individual. And there are ways that we can tick a box to say this person prefers a letter. This person is not at home very much, so they'd rather an email or a text, you know, and with all the technology out there that we've got at our fingertips, we probably don't use it as well as we could, but it's all things that we could be doing better. So is there like a final, like, have you got like a final message or motto or things that you want to just leave us with?
Norma: Mainly, like I said at the very beginning, that we shouldn't be defined by our illness, but by that we are who we are and that there is a life here and also that we've got to keep it real. We can all have pie in the sky thoughts of what we'd like, but keep it real because this is the reality of our lives.
Kate: Absolutely. Yes. Great. Thank you so much.