Inspiring Resilience - Empowering Lives

Episode 54 Getting Lost in NHS admin

Key topics discussed

  • Admin failures delay care
  • Why NHS paperwork, referrals and digital systems break down, and how this affects patients with long‑term conditions
  • The King’s Fund / Healthwatch England / National Voices report on admin problems and patient safety
  • Shocking stats, including:
    • 44% of people with admin issues give up seeking care
    • 17% of NHS complaints relate to admin and communication
    • 1 in 5 patients receive appointment information after their appointment
  • Blood test chaos codes that don’t work, missing forms, slow systems, and parking nightmares
  • The emotional and physical toll of admin
  • Why people with multiple conditions are hit hardest
  • How communication failures ripple out to families, work, and mental health
  • Why simple fixes, like calendar integration, would make a huge difference
  • The role of charities like IAUK
  • What other countries do differently,
  • The importance of continuity of care for chronic conditions

Keywords: inflammatory arthritis, NHS admin burden, lost in the system, patient experience, rheumatology, long‑term conditions, healthcare communication, NHS digital systems, waiting lists, blood tests, steroid injections, chronic illness advocacy, National Voices, King’s Fund

Transcript

Introduction: Getting lost in the system , why better admin is essential to getting care. Inflammatory! with Debbie Wilson and Katy Pieris, navigating life with inflammatory arthritis.

Debbie: Hello and welcome to Inflammatory with Debbie.

Katy: and Katy.

Debbie: Katy for me it’s been such a long week, but how’s it for you?

Katy: My week’s been okay. I’ve only been into the office once,

Debbie: nice!

Katy: but it’s been quite busy, which is good. Good and bad. The days go quick, don’t they, when you’re busy?

Debbie: They are certainly, I can’t believe we’re recording, thankfully on a Friday because it’s coming out next Friday. We generally try to record a week in advance, but also, I’ve now have an operation next week. So thankfully we are recording it this week.

Katy: Yes, when you told me when that was happening, was like, glad we put today in. But you’ve been waiting for that for a while, haven’t you?

Debbie: Yes, I have. It’s weird. You mentioned that you’re watching TV and you’ve seen this women’s health strategy. We’re to be talking about that a bit more in another podcast. But yeah, because then I text you to say, well, I’ve been on a waiting list for women’s problems I went to see them over four years ago, I had the initial problem.

Katy: Wow.

Debbie: And then they referred me and then they then saw it and like, it’s probably not, it’s not cancer, so it’s fine but yes, you do need an operation. I was like, okay. And then they referred me onto somewhere else, but then they wouldn’t see me because they didn’t have the right paperwork. I was like, well, I’ve got the paperwork here on my app. Well, that’s no good to us. But we’ll say, you can’t download from your NHS app either. So there’s no way,

Katy: can you not?

Debbie: well, I couldn’t anyway. So, there was no way could get that over to them. And then about a year later, I went back to my GP, say, look, what’s going on? They referred me, they got seen locally, and that was last January. And they’re like, well, hopefully we’ll get to see you get done within six months. And that was last January. And then I did have a phone call from them to say, you’re going to go through a private hospital, don’t worry, it’s been paid for by the NHS, and they’ll be in contact. And I was like, whenever.

Katy: Oh, do you get a nice high T with that?

Debbie: I don’t know. I’ll let you know.

Katy: because my friend had a procedure at a private hospital and you get very nice food apparently.

Debbie: I probably won’t be able to eat because I’ve got to go. But they haven’t even told me whether it’s local or general anaesthetic. I have no idea. And yeah, so they phoned me saying, oh, there’s a cancellation. Can you come in next Thursday? I was like, yeah, sure. Because I didn’t want to say no, because then you never know when you’re going to get another one. So was like, fine, but there was no number to call back and that we’ll send you an email. So, then that took over 24 hours for the emails to come through. Then you got to do all the pre-op questionnaire online and you’re not even allowed to take it in a paper form in. but this kind of really kind of tags into what we’re going to be talking about today is this admin burden on us because also that ripples effects on the families as well. So, we’re going to be talking about that because it’s not just us dealing with the admin, you know, especially if your family member can’t do or the admin to do with their inflammatory arthritis, sometimes you have to take over. But there was this report out during the week by King’s Fund, Healthwatch England and National Voices. And the charity as part of National Voices. And I sent it over to you Katy, because it was talking about all about the admin side of NHS. And I think it is just, should be shocking, but I don’t think it is. What was your thoughts?

Katy: Yeah, well, I mean, I think if you read the stats, you know, it is very shocking, but being a patient in the NHS, it’s not shocking at all because we all know the complications that we have with admin. And I think one of the stats that really stood out for me was the fact that 44 % of people that have admin issues, they actually kind of give up and they just leave the system and don’t sort of follow through with what they need. And you know, if you’re thinking about some people with potentially, whether it’s life threatening or whether it’s something that later in life might impair them like inflammatory arthritis, if you’re not getting the care you need at that first point or not getting seen or you’re, you know, having problems just to get seen, then of course you’re going to…not be bothered to continue. I lose my patience all the time. So, it’s so hard.

Debbie: Yeah, it is. Actually, one of the shocking things I was reading was they were saying, out of all the complaints to NHS, we know, obviously we’re not trying to slate the NHS at all. We know that, but there is no healthcare system that is perfect at all. But I think what they need to try and do is just realise that yes, there is a problem with the admin side and then you can create a solution for it. But 17 % of all the complaints are due to admin side and that communication.

Katy: One in five received appointment info after the date of their appointment. And I have had that before I’ve had it in in such that I’d arranged the appointment at an appointment. So, I had the date in my diary, but they said an appointment letter will come and the appointment letter has come after my appointment. So, but I’d been to the appointment because it was pre booked at another appointment, a lot of appointments in here.

Debbie: Yeah, but then sometimes that doesn’t even happen now. Everything’s just like, we’ll send it to you.

Katy: Yes. And quite honestly, I don’t know when my next appointment is. This has really made me think. I have no idea. I can’t remember when I was last seen. I’ll have to listen back to podcasts because a Digital Genius episode, that’s when I last had a consultant’s appointment. And I think that was last June from memory, Digital Geniuses. I need to check when my next appointment is because I have absolutely no clue.

Debbie: Well, this is the thing is life takes over. You shouldn’t have to. But one thing I would love for the NHS app to do though, is to have your appointments come through, but then send you a message, a reminder, not a text message, a reminder to say, so you could then link it to your diary, your calendar on your phone. Because I forgot a blood test. I think I mentioned I have a blood test come through and all the issues with that you can’t just have a blood test that day.

And even on the Sunday I was like, I need to go and get some petrol for my car because I’ve got to drive to hospital in the next day. And I completely forgot the next day. And I felt so bad though.  

Katy: Well, you do, because if you’re busy, yeah.

Debbie: And then they sent me a message to say, why did you not turn up? And I was like, oh God, I kind of forgot. but then they were like, well, can you give us feedback and help how we can help you? Remember, I was like, yeah, give me something that I can link to my calendar on my phone or then when I’m working so it can come up on my calendar through work. But then I had to then rebook it, and it was then for yesterday. I was like, got to remember, got to remember. And thankfully I put it in every single calendar around the house.

Katy: Just write it on doors and on post-it notes.

Debbie: I was actually going to put sticky notes up to say, got to remember your blood test. but it’s just all that inside of going to the hospital, trying to find a parking space.

Katy: Oh God, I’ve got a story.

Debbie: But I was really good got into the parking space. I was like, great. Couldn’t open the door because they are so close together. They’re like, well, I can’t get out. So, I then had to kind of park. Not the best, do apologize. But then because no one else had parked properly either, makes it, it’s like, well, I’m just joining the crowd. I’m a sheep now. I’m just joining what everyone else is doing. But then I went and turned up. put all my things into the computer, the tap screen. And then my name was then first up on the board. But it was really busy. And then my name was just called and everyone was just staring at me. They’re like, why is she going now? And we’ve been waiting here for ages. And was like, I don’t know.

Katy: Some people do turn up about two hours before their appointments though. Yeah. Yeah.

Debbie: I do, I suppose if you’re doing public transport, you can’t guarantee yet completely understand. But then she was like, have you got your form? I was like, no, I don’t have my form because it’s all through outpatients now. And then she spent my name wrong and so she couldn’t find it. And then I was like, right, you just missed the D out of Debbie. I don’t, you know, you don’t want to say, she called me Eby. Eby.

Katy: You called Ebi? Ebi, I’m gonna call you Ebi. Ok Ebi.

Debbie: But yeah, I felt really bad for having to kind of just spot her error. I was like, really sorry. And then obviously we’re just talking about how busy she’s been and everything. So, it was fine. And yeah, and now it’s just like, then there’s no communication then about where your blood test goes, how long it will take or anything. like, yeah, and I know that my results will go through my app but I think that should just be basic care to say, this is how long.

Katy: Yeah. Yeah, I mean, my results don’t go on the app. I never… I don’t. I just don’t bother.

Debbie: No, they don’t. So how do you get your results or do you never?

Katy: I know that if I have a dodgy result, they generally call me. So I have my appointment on Monday, my blood test appointment. And I think we spoke about this before. Further to my hospital getting its new digital geniuses and new digital systems last year. Go back and search for that episode. It’s quite funny.

Debbie: It was a very good episode, must admit. I remember it very well.

Katy: So since then, the rheumatology team sends me a code. So they don’t, I used to love it when I used to go to an appointment, they’d print me off loads of blood test forms that would last me all the blood tests I needed to get my repeat. Now I have to call the nurse’s helpline, leave them a message, because obviously it’s not really ever manned. Leave them a message saying I’m due my blood because my biologics prescription is due. They will then generally ring me back and give me the code or this time actually they just text me the code and said, due blood test, here’s the code so that they can print the forms off. It was on Monday. It was 2.20. I got to the hospital at about 10 past two. No parking spaces. Absolute nightmare.

Debbie: no.

Katy: But anyway, I knew I’d got a nice 10-minute buffer. I’d got 10 minutes to just keep driving around. There were loads of us, there was about 10 cars driving around trying to find space. I found some spaces; I couldn’t trust my parking ability. The cars that were next, they were big ones that stick out.

Debbie: You need a really tiny car.

Katy: Anyway, banging on about parking, but it is a problem. It is a huge issue. I normally would cycle or get the bus, but because of the time.

Katy: I didn’t really have time because I wanted to get home quicker because it was like middle of the afternoon. So anyway, get in there. I go; you need my code. So, I start reading out the code and she goes, that’s the wrong code. And I’m like, no, it’s not. Look, read my text message. This is the right code. I mean, I do feel sorry for receptionists because they do get a lot of angry people because of the admin issues with the NHS. People get frustrated because I was saying this code and she’s like, that’s the wrong code. And I was like, well, that’s the code they’ve texted me. What do you want? What do you, I just said, what do you want? got like, then I was like, oh, calm down, calm down, calm down. It was actually, no. then it transpired

Debbie: Yeah, did you not read the sticker? They don’t tolerate abuse.

Katy: She explained then that from the rheumatology team, since they’ve had this new system in the hospital, it worked for about a month, which would have probably been when I last got a blood test and then it now doesn’t work anymore. So actually, all they need is your NHS number. Thankfully, I’ve got the NHS app that has my number. And I was like, you know, when you kind of, they ask you for something that you don’t have, because I haven’t got a letter. I’ve just got a text message with this code for this blood test. And then I was like, well, what do I do? What do I do? I haven’t got any letters on me because I thought I was just bringing this code. was like, and then thankfully the other receptionist went, do you have the NHS app? And I went, I do. Good point. Yes. My number’s on there. when you’re, I was like, God, I’ve gone through all this rigmarole of parking. You’re just feeling, you’re already frustrated because you couldn’t park your car. You’re panicking about the fact you’ve got this time slot.

then they tell you you’ve got the wrong number. you all just boil, your blood’s boiling.

Debbie: It does. And obviously, and it’s just extra sort of stress. It’s not good for us anyway. And all the, and it is.

Katy: No, I mean the great thing was because the hospital is in disarray and we’ve worked out, my neighbour told me actually, when ITV, BBC have any NHS talks about the NHS crumbling on the news apparently they generally sit outside our hospital. James will know what I’m talking about because he goes to the same hospitals.

Debbie: Yeah. my God. The thing is though, this isn’t something that we should be, we’re laughing because it’s true. That’s, that’s the only thing and, but it is.

Katy: What I was going to say is, yeah, yeah, the saving grace was my parking was free because the barriers had broken. So I didn’t end up paying loads for parking, which was fantastic.

Debbie: I didn’t actually because at mine you can get half an hour free.

Katy: Same as mine, which is what for a blood test you can normally do. But then when you have all these complications and problems, you can’t. You end up… Yeah.

Debbie: Yes. It’s just, yeah. Again, it’s just something that should be straightforward. I’m sorry, but what was wrong with the form?

Katy: This is what I said to the lovely lady. I mean, we had a bit of a joke on after my little like almost meltdown. I then sort of changed the tone and started joking with them just to lighten things up a bit. And I was like, what was wrong with the form?

Debbie: Yeah because I must admit, even when I went in and then when eventually she got my name right, the system, the computer system was so slow. And it was just like watching something from like, all I expected was the dial up tone as well.

Katy: Yeah. dial up into it.

Debbie: Was just like, that’s going to kick in soon. But it is, and I must admit, just getting back to this King’s Fund report, it is called Lost in the System, The Need for Better Admin. And this is why it kind of picked up with me because…

Debbie: I am due something again in my back with my inflammatory arthritis, a lower spine operation as well. But again, I have been lost in this system. And it’s just like, but what is the system? What is it that where can I be lost in it? And it’s just so, so frustrating because then I think also what happens then with families and especially bless my mum, she was just like, well, you need to keep phoning them. You need to keep nagging. It’s like, but who?

Katy: Yeah, which is, it takes a lot

 Debbie: Who do I then phone? If I phone my rheumatology, but it’s not under them, it’s under more of the pain clinic, but I don’t have a phone number for that. And if I phone my rheumatologist, that again is just a voicemail. They won’t generally be able to answer it. And I do not want to go through the hospital switchboard system because that will just take forever. And I have to…

Katy: And they generally put you through to the wrong number anyway, because I’ve done that before. And then I’ve ended up being picked up by like, I don’t know, some completely different department. And it’s hilarious because you’re like, I didn’t want you.

Debbie: I know. And then they just hang up and then you have to go. And it is trying to psych, especially when you’re so fatigued. And obviously you’re phoning because you have an issue, whether it’s you’re flaring, you’re in pain or, you know, just, and that fatigue also hits in as well. And for me, I have to psych myself up to make these phone calls because you never know how long it’s going to take. So I have to set time aside for it. And then not doing it, especially now I have to go and pick my daughter up. like, well, I can’t do it within these time periods because I have to go pick her up or do the school run. And I then don’t want to be stuck in like the 9 a.m. phone call and it’s like, well, what do you do? And I think this is also, it is so frustrating. And some of these other stats that came up was like the people that did have more of an issues were those that have long term health issues or multiple conditions. And again, I completely relate to that because obviously I’m under two hospitals, my eye hospital, my rheumatologist hospital as well, but lots of other people are.

Katy: Yeah, I think so many people that we’re talking to, they’re under multiple departments.

Debbie: Exactly. it is just, you know, look at Andy, he was, thankfully his ones are very close and brilliant.

Katy: Yeah. I mean, his hospital sounds amazing to me. Yeah.

Debbie: I know, think like it, I could move to Wales because I will say your prescriptions are free in Wales. But again, it’s just different things happening. Even in the UK, you’ve got the Welsh and you’ve got the Scottish and Northern Ireland are very different to England. But it’s just showing that even wherever you live, that each system is so, so different. And it is because one of the people that wrote in last week, when they never generally phone their rheumatologist, and I think, Katy, you’ve said that they take what, 48 hours for you?

Katy: Yeah, so mine, they say when you call the helpline, and it’s bizarre the types of things you have to call the helpline for, it doesn’t make sense. So I call the helpline to get a blood test form, but to me, that’s not a helpline issue. So I’m taking the bandwidth of someone with an actual flare. There should be a number, I personally think it should be, so there is a secretary’s number. They apparently won’t deal with because it is the nurses that give me the form for the blood tests. But I think there should be a separate line for things like admin.

Debbie: Yeah, the admin side.

Katy: because there’s a phone line for appointments. There’s a phone line to call your rheumatologist, secretary. And then there’s the nurse’s helpline and for things like blood forms, it’s the helpline, which is ridiculous because why are they listening to me asking for a blood form when they could be listening to someone who’s going through a flare and needs some serious support. But yes, mine’s quite good because it’s 48 hours, but I know these people, it took like 10 days. Was that 10 working days or 10 actual days? But I mean, either it doesn’t really matter. It’s very long time.

Debbie: It really is, especially if you’re going through a really bad flare, because then, you know, also as this is then the ripple effects onto the families because they get frustrated too. They don’t want to see you in pain. They kind of want you to go and see a doctor who, know, it’s not going to be that quick fix, that magical fix, but maybe just discussing whether you’re on the right medications or not, whether you could then think about changing or more of a short term thing would then be steroids. But it’s just having someone to talk to, to listen to, to kind of give you some advice. But then if you can’t get through, that frustration also ripples out.

Katy: Yeah, because I think that’s terrible because when I’ve had flares, I’ve managed to pretty much call and within, I’d probably say it’s been 24 hours, I’ve had a call back and then I’ve gone in and had a steroid injection in my bum. it’s been like, and then, know, mentally as well, just knowing that you’re having something to help. It’s a bit like when you’re really desperate for the toilet. This is my analogy. You’re really desperate for a toilet. You get near a toilet, you almost pee yourself. So it’s a bit like you’re really in pain and then you know something’s going to help. So you feel so much better already.

Debbie: Okay. But also, when I saw my rheumatologist, my elbows are really bad at the moment. Generally what would happen is that they would do a steroid injection straight away, but they’re not doing them now. They’re having to do them through ultrasound, which I kind of get patient safety and everything. But now I’m waiting for an ultrasound appointment.

Katy: So the last time I had a steroid injection in a joint, that’s what, but it was really bizarre. went on a Saturday. This was the one, I think I talked about it in one of the episodes where it was in the ultrasound place and there was a bed. So I got on the bed, but I was having a steroid injection in my wrist and they were like, what are you doing? And I was like, it was just there. I assumed I got on it.

Debbie: So I remember you saying, why have you got on the bed? Yes. But yeah, so getting back to this steroid injection, I don’t know who I would then chase out. Because if my rheumatologist has put the referral in, there’s no point chasing them. And I think this is then where you do get lost in the system, is because you have no idea who you then contact. Because I don’t know the ultrasound department number.

Katy: Yeah, because that’s pretty bizarre. Sorry, I’m just thinking aloud essentially because I just used to, I can remember, I just used to get steroid injections in my appointments.

Debbie: I did as well. Yeah. I had once, one went in my wrist once and then she told me to put my wrist behind my back, which was killing. And she then injected in my elbow and then she wanted to inject in my shoulder and I was like, my shoulder is fine. Please leave that alone. But that, that is what was happened. it’s just that extra burden on patients now. And it’s

Katy: Well, it’s having to go back as well. You’ve got, it’s the added, yeah.

Debbie: Exactly. It’s not just the economic cost, it’s the environmental cost of going back as well, I think what gets people’s frustration is these things should be so simple and so straightforward, but this is where they’re not. And I don’t know what the solutions are for the NHS at all. As I said at the start, it’s just knowing that there is a problem.

Katy: Yeah. Well, and I think the conversation that we had with Dr. Keith Grimes around utilizing technology and using AI solutions, there must be better solutions out there to sort of, you know, bring this all together. I think you mentioned before we were recording about a GP and the amount of time they were spending on admin was more time than actually the time they were spending with patients on care.

Debbie: Yes.

Katy: It’s terrible. It’s in society as well, isn’t it? Teachers, amount of admin they have to, public services, the admin load as a whole, has got to crazy levels.

Debbie: Yeah, but it’s these things that I think people so easily take for granted, but don’t realize actually how much effort is involved in doing everything that goes on behind the scenes. And I think actually that reflects us in our lives as well. Being patients with living with really chronic fluctuating conditions is that yes, what goes on, you know, we may look fine and everything, but there is so much that goes on behind the scenes about it.

Katy: Yeah, what you see is the tip of the iceberg, not all the stuff going below the water. Yeah.

Debbie: Exactly. That’s kind of what Andy said as well. is, there is so much stuff underneath that no one really ever sees. But then they really have to try and address these issues before…Any improvements can be done. And I really hope, you know, last year when you had your blood test, Katy, a year on, things have actually gone backwards, not forwards.

Katy: Yeah, yeah, it blew my mind actually that this new system that they put in place for whatever reason, and apparently it’s just rheumatology, it doesn’t work for. Typical, typical.

Debbie: My gosh. Yeah, it’s very typical for us. Yes. But then it’s like, how much money is that? Is that going to cost them as well? and all the training that they were doing, that was complete waste as well.

Katy: But it was clear that the ladies booking you in for your blood tests, they were using this system every day, but they were so frustrated. So they’re frustrated, patients are frustrated. It’s just not working.

Debbie: No, it’s not. I, know, thankfully we are now part of the national voices so we can hopefully help provide some solutions and actually what is needed. Because I think obviously we’ve said before our conditions, they cover a lot of areas, especially when you put in those comorbidities as well. And we need to make sure that people, whatever type of inflammatory arthritis and whatever comorbidities as well, that they are properly looked after.

Katy: Yeah.

Debbie: If admin is efficient and if there’s anything that we can do as a charity as well, which we hopefully will be taking forward, is trying to work out to take some of that admin burden off us whatever we can do. So, we’re looking into that as well. But it is, we’ve said, communication is key, but that needs to be key with your consultants and whatever healthcare system you’re using as well. And when that communication breaks down, even in with your families, even with your friends, that can have such huge impacts on you, your stress levels, your pain, your flaring. And so, we just need it to be just slightly more straightforward, really.

Katy: Yeah. And I think it’d be really interesting actually, any of our international listeners, how does this work in your country? What can the NHS as a whole learn from other jurisdictions and what could be replicated? I’m sure people are looking at it, but on a patient level, it’s interesting to understand what the differences are.

Debbie: Yes, I am part of some Facebook groups, which obviously again, global. The people in America, trying to get insurance for some of these medications So in a way, again, we’re not slating the NHS. is generally, we are so, so lucky.

Katy: No, we’re so lucky.

Debbie: But then I think we said before, it’s not free. do pay through our taxes though, but it’s just all these things that are taken for granted that should be simple and not, and why not? And we want to help try to improve it really. It is hard and healthcare doesn’t just start and end with treatment either. It’s that continuation. And especially when you have a long-term health condition, it’s that continuation of it all.

Katy: Yeah.

Debbie: Yeah, if you do have any comments on this, please do get in contact with us. You can either email us at info at inflammatoryarthritis.org or again, follow us on social media. We are on Facebook, Blue Sky, LinkedIn and Instagram. And yeah, continue the conversation. We’d love to hear from you. And also you can sign up to our regular newsletter at inflammatoryarthritis.org where you’ll get the latest information about the episodes, upcoming episodes as well. We’ve got some really good ones booked in and hopefully more collaborations with other charities talking about the different types of arthritis and going through those misconceptions but until next week, Katy, when we will then be at the British Society for Rheumatology Conference, and we’ll give everyone an update and hopefully throughout the conference as well. But until then, Katy it’s goodbye.

Katy: Goodbye.

Show notes

In typical Inflammatory! style, Debbie and Katy somehow make even the dullest topic, NHS admin, funny, relatable, and full of those “only happens to us” moments. This episode dives into the hidden admin burden patients face when navigating NHS care – from missing paperwork and broken digital systems to long waits, confusing referrals, and the emotional toll of chasing appointments. They share honest, often hilarious, often frustrating real‑life stories that show how poor admin impacts treatment, family life, mental health, and flare management. They also explore new research from The King’s Fund, Healthwatch England and National Voices, and discuss what needs to change to make care safer, smoother, and more humane… ideally before any of us lose the will to live in another hospital phone queue.

Key words: inflammatory arthritis, NHS admin burden, lost in the system, patient experience, rheumatology, long‑term conditions, healthcare communication, NHS digital systems, waiting lists, blood tests, steroid injections, chronic illness advocacy, National Voices, King’s Fund report

Key Topics Covered

  • Admin failures delay care
  • Why NHS paperwork, referrals and digital systems break down, and how this affects patients with long‑term conditions
  • The King’s Fund / Healthwatch England / National Voices report on admin problems and patient safety
  • Shocking stats, including:
    • 44% of people with admin issues give up seeking care
    • 17% of NHS complaints relate to admin and communication
    • 1 in 5 patients receive appointment information after their appointment
  • Blood test chaos codes that don’t work, missing forms, slow systems, and parking nightmares
  • The emotional and physical toll of admin
  • Why people with multiple conditions are hit hardest
  • How communication failures ripple out to families, work, and mental health
  • Why simple fixes, like calendar integration, would make a huge difference
  • The role of charities like IAUK
  • What other countries do differently,
  • The importance of continuity of care for chronic conditions

Standout moments:

“I’ve been on a waiting list for over four years… and at one point they wouldn’t see me because they didn’t have the right paperwork.”

“Forty‑four percent of people with admin issues just give up. And honestly, I get it.”

“You shouldn’t have to psych yourself up to make a phone call just to get the care you need.”

“What you see is the tip of the iceberg – not everything going on underneath.”

Useful resources:

Lost in the System: The Need for Better Admin – King’s Fund, Healthwatch England & National Voices report

 NHS App – for appointments, NHS number, and test results (when it works!)

 IAUK – support, advocacy, and community for people with inflammatory arthritis

  • Website: inflammatoryarthritis.org
  • Newsletter signup
  • Socials: Facebook, Instagram, LinkedIn, BlueSky

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Have your own admin nightmare story? Want to share how healthcare works in your country? Email info@inflammatoryarthritis.org or join the conversation on our social channels.

Disclaimer: Debbie and Katy are not medical professionals. They share personal experiences of living with IA to build connection and community. 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/

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