Episode 18 – Nurse!

Ep 18 – Nurse!

Introduction: We meet a lot of medical professionals as we navigate our condition. Today we shine a light on our wonderful nurses. Inflammatory! with Debbie Wilson and Katy Pieris. Navigating life with inflammatory arthritis.

Debbie: Hello and welcome to Inflammatory with Debbie

Katy: and Katy.

Debbie: How are you today, Katy?

Katy: I’m really good. I had a brilliant weekend. I went Nordic walking somewhere in Herefordshire.

Debbie: Lovely.

Katy: Like on the border of Wales and England. So, it was really, really good. Really fun.

And I hear you had a bit of an adventure. You could call it an adventure if you like. In context, I’m a trustee of ARMA, which is the Arthritis and Musculoskeletal Alliance charity.

We do amazing work. We just had a celebration event last night in London as well. It was all about health inequalities. And so, there’s really, really good work going on. And the board, we all got together. And it was just such a lovely day because a few of us on the board it’s now coming up to our end of term, so we’re not staying on. And we ended up going down the pub and put it this way, me and a few others stayed until kind of kick out time at the pub and trying to navigate the tubes home. And yes, whilst having a few too many, put it that way, but that’s it.

Katy: I think there’s more, but I think we should leave it there, don’t you?

Debbie: I think we really should, yes. Professional standards as always. But this week we’re going to be talking about mental health, being Mental Health Awareness Week. And it was also International Nurses Day on Monday and a shout out to all the amazing nurses that work across the NHS and obviously for us, especially in our rheumatology departments. But Katy, how’s your mental health been? We obviously did a deep dive back in episode five. I can’t believe it was that long time ago. But how are you? How’s your mental health?

Katy: I think I’m okay at the moment. As I’ve mentioned, I’ve just been on a really nice little Nordic walking weekend, which I always find things like that because it’s quite social and I do well following like a social weekend, especially maybe meeting people I don’t know so well. But then I think it’s always up and down, isn’t it? Because different things will come in and out, whether it’s kind of work stresses, busy periods, lots of things going on. And I think as you’re going into the summer, I don’t know about you, but my social calendar gets quite manic.

And so, it’s just that totally trying to manage everything you want to do in a day and whether you can fit it all in. And then sometimes I think I can be someone that will just completely procrastinate as soon as I’ve got too much to do, and I just sit and do nothing.

Debbie: I think for me that’s in it, but I’m realising when I’m doing that now and I just know that there’s no point in me just sitting here because so many things just go around my head all the time. And I’m just knowing that actually probably a bit like you, knowing a bit like a puppy, I do just then need to get out and do something, whether it’s walk the dog or even just get out. A couple of weeks ago I felt really, I think that’s just normal daily stress and just obviously life and obviously I’ve been ill and I think things had got on top of me and I just sat on our local moors. I didn’t have my dog with me because as much as I love her, sometimes she can cause a little bit of anxiety for me. And I just wanted to sit and just fully relax, which I did. And it was lovely. I think the sunshine does help as well, just knowing that you’re there. But then does the sunshine and does the heat affect your inflammatory arthritis?

Kayt: It can do. It needs to be about 38 degrees for my inflammatory arthritis. Well, maybe that’s a slight extreme. But you know when we get like really, really hot, because it was when I was going through the diagnosis process when we were in Perth, Australia, that’s when I got massive sausage fingers. But I do sometimes notice it on holidays. So, I need to be in extreme heat for it to really affect my inflammatory arthritis. But I think I do swell a bit. Like my feet will start to swell. And yeah, it’s a bit of a mix, to be honest.

Debbie: Okay. Yeah. For me, I think the heat does. And again, my hands get quite swollen and my knees. I can just feel them just aching that little bit more. But it seems to be weird. I was talking about the heat in May. It seems really unprecedented hot times. We should be talking about this more in July. But it’s been so hot.

Katy: So, I love the heat as well. So, I am a proper, I do think I get a bit of SAD syndrome. So, Seasonal Affective Disorder, I think it stands for. Because I do feel myself when it’s like grey and miserable in the morning that I just feel so kind of fed up with the world. And then as soon as this nice kind of spring sunshine comes, and I always feel a bit disappointed in myself because I don’t think the weather in this country, because we’re so used to it being grey, rainy, all that kind of stuff. I don’t think it should really affect how I’m feeling because I feel like you should be able to get over that. But it definitely does.

Debbie: Yeah. I remember when I was working in London and you go in and it’s dark and then you come out and it’s dark. And if you hadn’t been out for lunch, you could just sit, and you just haven’t had any daylight or anything like that. And that’s kind of what we do need as well. That vitamin D in us, that sunshine, it does make you feel a little bit better. And also, because the sun is here later at night as well. And so, you feel your days that little bit longer.

So, you can feel slightly more productive in that you’re not having to get everything done. Even though it’s strange that the hours are the same, but it’s just when the sun goes down, when it gets dark, you just feel just all that you can’t really do very much.

Katy: I guess we’ve got natural hormones, haven’t we? That kind of, as soon as it goes dark, naturally want to send us to sleep. Because if we’re going back to like cave Mondays, we would need to get away from potential problems.

Debbie: So, I suppose there’s this thing, talking about mental health, is as we are British and I suppose there is the law that when we are asked, how are you? We always answer, we are fine, or I am fine. And even if your world is falling apart, you just want to put on that mask, that brave face to say I’m fine. Actually, you’re really not. So, Katy, for you, going back to your mental health, would you be that typical Brit and say I’m fine even when you’re not?

Katy: Sadly, yes. But it is something I want to try and get better at. So, I think I might have spoken about this before, but it’s like trying to instigate that traffic light system at home, kind of to my son specifically, how are you? And just answering like red, yellow, green, to make it easier to kind of get round that point. Because I absolutely might just, I think it’s like an inbuilt reaction that I’ve had since birth or since I could at least speak. As soon as someone says how are you, you go I’m fine. And inside you’re going I feel like death or whatever.

Debbie: Or I’m flaring really badly, but you don’t want to know, so I’ll just say I’m fine.

Katy: Because why do we ask that question? Sometimes do we really want to know the answer, or do we just want to kind of have that, use it as a bit of a small talk piece of narrative? And it’s how can we start to have those more open conversations about our mental health? And I guess the way to do it, I’m answering my own question, is to actually start doing it and showing our vulnerabilities. But it’s so hard.

Debbie: It is, it really is. And I think when we did episode five, we did take ourselves into that really vulnerable place that we have been. And it is trying to get that normalised. And that is what happens, especially when you have inflammatory arthritis, the disease fluctuates, your mental health will fluctuate as well. And if you are feeling down, just be open and talk about it. But it is so hard. I must admit, I did some research with some other paediatric charities and the presentation that we did to this event was called, I am fine, because that is again, it just sums up exactly how we’re not feeling is the thing. And it was really impactful, that presentation, that research. I put the research into the show notes because it really just highlighted how inflammatory arthritis and mental health should be treated and seen as a whole treatment or a whole sphere.

Katy: Yeah, 100% Really,

Debbie: because it impacts on each other and we really have to kind of help people to normalise that actually, if you’re flaring, you’re probably going to mentally feel pretty down as well because it takes so much effort just to do the small things in life and whether you’re at school, whether you’re at work or just trying to be a human, having and when you’re flaring is just that much more harder and obviously, you will feel… I always used to feel ashamed with it and I think obviously when we had that conversation with Rachel last week, it was so eye-opening that she didn’t feel ashamed at all by having it to herself.

Katy: No, it’s brilliant.

Debbie: And actually, great, and this is what we want the new generation coming through. No one should ever feel ashamed of what diseases they have and with inflammatory arthritis, treatment and everything has got better but it’s everything else that goes around with it that we need to kind of improve to say, you can be okay with this. And just to remind people that Rachell Smith’s episode, if you didn’t hear it, it was on last week and she really talks about her journey with axial SpA and it is so inspiring and it’s so empowering as well. I found it really empowering and she’s talking about the national campaign that she’s done with NASS as well, so please go and listen to that episode.

Katy: And I just wanted to go back Debbie because your kind of talking about mental health and the next generation a little bit. How are your daughters? Do you see a difference in the way they respond to the way you and I might?

Debbie: I think so, and I think this actually leads on to talking about nurses. My daughter, she really struggled with one of her medications and that really, really impacted her mental health and for me it was the most heartbreaking thing to do to try and give her a medication because it was an injection, and I had to do that because she never wanted to even touch it at all. She was like, I can’t even touch it mum, you have to do this, and I did and she was just always crying, screaming, it was just horrendous. And I went and spoke to her nurse, we went and spoke to her nurse, we had an appointment, and her nurse could see how bad my daughter’s mental health was and she initiated changing her medication. Even though my daughter said, I’m fine, I was like, no, this nurse could see what was going on between the lines and even to this day she really, she didn’t save her life but she really changed her quality of life and having that medication change where she was like, well it’s still an injection but it’d be fortnightly, there’s no side effects and yeah, so when she then changed that medication it was like having a brand new child and I think it’s really. I think it was also a lesson for my daughter as well to go actually, I need to be honest with consultants and nurses and my team because they can actually help me. It’s not having, like for me going, well I could tell you but you probably won’t be able to do anything about it, so you know, I’ll leave it. I think again, it’s that generational change to say actually, be honest with the team, they are there to support you through the good times and the bad times as well. What about you Katy, with your son? Is he, obviously you have your traffic light system but is that coming across with him, do you think?

Katy: Not really, boys don’t like having a chat to their face I keep trying it but failing miserably.

Debbie: We’re still only young so maybe when the hormones and everything kick in it’s kind of, yeah, good luck.

Katy: So you know, I’ll keep plugging away at that one because I do think it’s important but it’s just, you know, I think I attended something all around the adolescent stuff and talking about protecting your kids online going off on a complete tangent but it all kind of interlinks, doesn’t it? Kind of that mental health piece knowing what they’re consuming in person, digitally that sort of stuff but in terms of nurses, for me I don’t know, Debbie, how much you see a nurse but I didn’t see a nurse until I was going through the process of trying to access biologic treatments.

Debbie: Oh, okay

Katy: And prior to that, obviously the nurses were always in my rheumatology appointments, but I always felt like they took more of an administrative role giving you the blood test forms, giving you the leaflets making sure you go to the desk and book your next appointment, so it was just a bit different. I think to when you actually, I do now see a nurse once a year but it’s really, again, it’s still a bit administrative because it’s more about making sure that I get my repeat prescription for my biologic medication.

Debbie: Right, because I must admit the nurses that I have seen in the past have been so lovely they have been different to the consultant and I think the consultant, you know they’re great and everything as well but they are more, they felt for me they were pushed for time we’re here, we’re going to just give that treatment and yeah, you can then go and see the nurses. And when I went and saw the nurses for me also, probably it’s like a disclaimer one of my nurses was a friend of a friend so she kind of knew me that way as well and gave me a bit more time but even before that, and she didn’t know that, it felt that I could just sit there and just tell her exactly how I was feeling how I was getting on with the medications or not at the time because I wasn’t and it just felt that she was listening like really listening to what I had to say and trying to come up with new ways that could help me with my injections. And just general life really, she was just so lovely and I think that’s where sometimes I think for me it feels a shame that your nurses feel more admin side because they offer so much more they really give that human side to healthcare than some consultants do.

Katy: My nurse did that got me onto the biologics but then she left and then now I just, it’s so I think I’ve mentioned in episode one or two I sort of had a really good consultant and then when I went down the route of trying to access biologics I had a really lovely nurse who helped me get my DAS the disease activity score she helped me get it into the range to actually access the medications she told me to say “aw”” a few more times I’m not recommending that to anyone but just you know so she wanted to make sure I got on the best medication so she kind of worked with me to get to that point.

Debbie: Yeah well that’s the thing you know sometimes these medications are a bit of a tick box due to funding and everything that goes along with that so you know we get it completely but obviously she felt that was the right medication for you to go on and was just helping you to get there so no I get that completely but yeah I think nurses have really done a great job in my team as well they have been really shorted of staff in nurses trying to get that because it should be part of the whole multidisciplinary team.

Katy: Yes, because there’s this whole team that people have always told me about then I’m like where is this team that people say there isn’t a team.

Debbie: I know it’s really hard because this is what also I suppose gets me in obviously what ARMA’s doing with the health inequalities is trying to get rid of that postcode lottery why should someone who lives somewhere else get that full team and someone who you know same condition just in a different area doesn’t and that really drives me mad but obviously recruitment and everything is I think that’s a whole podcast a whole series of podcasts and too political. But you know all the nurses I think a shout out to them they really do a fantastic job.

Katy: oh yeah because they do they have to deal with a lot of the kind of front line issues as well so they man some of the helplines at the hospital, so that is where I’ve actually seen a huge benefit with the nurses is when I’ve been having trouble with some of my medication deliveries trying to get through to the right person to make sure that prescription is signed off the nurses helpline is really really good. Even though sometimes it takes about 48 hours to get back to you.

Debbie: I have 7 days to get back to you

Katy: that’s not a helpline that’s a, oh my god anything could happen within 7 days that’s terrible I thought 48 hours was bad,

Debbie: For anything urgent you phone 111

Katy: yeah yeah yeah cool. I’ve got you mine’s like 48 hours so you know that is ok that’s a really good service I thought that was terrible you learn something new every day and what’s bad you know. That’s one thing there’s no parameters is there of what is good and what I’m sure there actually is but I’m not sure how many departments actually you know stand by those kind of what’s good.

Debbie: yeah well I also think it’s hard because obviously they have to compete for money and recruitment and staffing they have so much pressures on them they really do but I think even within that they do such a great job and yeah the helplines they are really really good at.

Katy: yeah I think the helplines one of the things that I found really really amazing especially in the kind of early days especially when I was flaring and when I kind of knew I needed maybe a steroid injection in my joint. To sort of help get through a flare or get a course of something to kind of help get through a flare that’s when the nurses really really were supportive and kind of guided me of what to do because you just don’t know do you especially in those early years I know it’s different for you Debbie but maybe when you were first an adult with the condition you don’t quite know how to navigate things so the nurses really do offer that extra support and guidance.

Debbie: yeah no they did when I then had my scleritis and then went on the long-term treatment that I kind of called out as a different stage of my life, new chapter, the nurses there were fantastic, and I said they’re the ones that really helped me and changed then get on to other medications as well. But I don’t actually see one anymore maybe because I have such a great relationship with my consultant, I just see her once a year but a couple of years ago when I was going through whether I had to change medication again or not the consultant then went away and spoke to her biological nurse. I don’t know what the technical term is but yeah the nurse who deals with the biologic medicine and they were like well actually no we can do this as this option for you and then she phoned me back so I know they do talk and everything behind the scenes which is obviously what you’re doing now. Yeah put it into context Katy’s son hasn’t been too well and now he’s at home in the same room as Katy and I just hear his head popping up once in a while.

Katy: So I have a slightly different experience because I do see my nurse so I’ve got a nurses appointment actually on Friday but I think it’s purely because my prescription is up for renewal because I got a very oddly worded letter about the fact I need a blood test so I always find this the difficult one they expect you to get a blood test without a blood test form.

Debbie: Well, mine’s now different actually everything’s online so if you’re outpatients apparently all on their new system I just turn, I have to book online I don’t need a form I just need my NHS number.

Katy: Why can’t I have that.

Debbie: Again it’s so different.

Katy: because they have to post me a form every time.

Debbie: I did have that but now it’s changed this new system but hopefully again not trying to get all political or anything but the NHS I know obviously the government are looking at digital stuff because that is what drives me mad about the NHS especially being under different hospitals and they won’t talk to each other and all the digital side and everything but hopefully all the hospitals can then be have the same systems would be great it really would.

Katy: Yeah, if things actually spoke to each other,

Debbie: Yeah, because I then don’t have to go I just get a message to say I am due a blood test I then don’t even see my nurse I just phone them to say I’ve had my blood test they look at the results and they just do my prescription behind the scenes.

Katy: Oh, I love that, that’s brilliant yeah fingers crossed your service might at some point because there is like some online thing, but it doesn’t do that.

Debbie: oh okay now we have this whole patient my kids drive me mad I can’t say portal, is it portal?

Katy: it’s portal,

Debbie:  portal I can never say that word very well so they would just laugh at me.

Katy: How can you say it wrong, what do you say?

Debbie: I say portal,

Katy: portal?

Debbie: Okay and they take the mickey out of me for it we have this really great patient portal where you can see everything, you can see my x-ray results, my blood tests and now you can, they will then kind of show you the previous blood test results as well so whether it shows whether you’re going up or down or not as well, so it’s fantastic but all services need that.

Katy: yeah that’s really really good, I really like that I’m going to have a chat with my nurse.

Debbie: Please see if we can get it all changed just for you Katy do they know who you are?

Katy: do they not know who I am? I mean I’m sure my physio has spread the word of us

Debbie: We hope everyone has because obviously this is great and I hope we’ve given you some insight again into our mental health at the moment and obviously for International Nurses Day shout out to you all, you do an amazing job and you keep mainly the patients on their toes as well to kind of keep us on routine and know what we’re doing when we should be having our appointments and blood tests as well. But thank you so much for listening I do just want to say we are having our first online event next week, on the 20th of May to raise awareness of World Autoimmune and Auto-Inflammatory Arthritis Day, in the evening at 6-7pm we are going to be having our first online welcome event to kind of get to meet me and Katy hear about what the charity is doing and how we want to develop and lots more as well, so please be part of that community to sign up you need to email info@inflammatoryarthritis.org for details again this will all be in the show notes and it’s on our website as well where you can also sign up to our newsletter at inflammatoryarthritis.org and we are on social media as well so please do follow and comment where you can, we are on Facebook, Blue Sky, Instagram and LinkedIn and until next week, it’s goodbye

Katy: Goodbye

In this episode of Inflammatory with Debbie and Katy, the hosts celebrate the important role nurses play in supporting people with inflammatory arthritis, particularly in the context of International Nurses Day and Mental Health Awareness Week.

They begin with a light-hearted catch-up about their weekends and segue into a candid discussion about mental health, personal experiences with stress, and the emotional impact of living with a fluctuating condition. Both hosts reflect on how weather and social environments affect their wellbeing, and the importance of being honest about mental health despite the British habit of saying “I’m fine.” They emphasise the need to normalise vulnerability and discuss how mental health and inflammatory arthritis are deeply connected.

They share personal experiences of how nurses often offer more empathetic and practical care compared to consultants, although their roles can sometimes feel limited to administrative tasks. Debbie shares a moving story about her daughter’s struggle with medication and how a nurse’s insight transformed her daughter’s quality of life, underscoring the critical role of compassionate healthcare professionals.

The conversation also highlights disparities in care due to regional differences and digital system inefficiencies within the NHS. The hosts praise the positive impact of nurse-led helplines and advocate for better integration and digital communication between services. The episode closes with an invitation to their first online community event to mark World Autoimmune and Auto-Inflammatory Arthritis Day.

🔗 Resources & Mentions:

Research paper: I’m Fine presentation is based on: ‘The current mental health status of children and young people with JIA, and their wider family’: a charity partner collaboration survey

📧 To attend the event, email: info@inflammatoryarthritis.org
🌐 Visit: inflammatoryarthritis.org📱 Follow on: Facebook | Instagram | LinkedIn | BlueSky

Disclaimer: The podcast is for informational purposes only and is not intended to replace professional medical advice. We talk about our personal health journeys and the podcast is not intended to provide professional medical advice, diagnosis, or treatment. We are not medical professionals and in no way claim to be medically trained. The podcast does not take responsibility for any losses, damages, or liabilities that may arise from the use of the podcast. The podcast does not assume responsibility for the accuracy of third-party content.

For more information, head to https://inflammatoryarthritis.org/