In this episode, we talk to specialist gastroenterology dietitian Christian Costas about his experience implementing dietitian-led coeliac clinics. We also talk about the struggles and successes that he has had and discuss how to help patients with coeliac disease.
Links and Resources
Coeliac UK Food Checker app (Apple / Andriod)
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o I've completely scrapped diet history. Well, not completely. I barely use them because at the moment, for me, a much more valuable way of knowing if someone is either compliant and knows what they're doing is giving them a food labelling clinic and seeing how they deal with
that. Welcome to the Dietetics Digest podcast, a podcast that helps you understand more about the different areas of dietetics on nutrition, on what others are doing within them way. Do this by talking to inspiring and influential individuals that are advancing practise in some way, shape and form. Our mission is to create a resource that helps dietitians to build, grow and share ideas with each other. Top advance their practise on the practise of others. I am your host errand boys. In in this episode, we talk to specialist gastroenterology dietician Christian Costas, where he talks about his experience in implementing dietician lead CD at clinics. He talks about the challenges some of the sort of mishaps he's had on many of the successes that he's had on how he's been able to do that over the past year on what is looking at moving forward. Hopefully you enjoy the podcast. Here it goes. Thank you. Thank you for coming and giving that time.
Absolute pleasure. Thank you for inviting me. I think you're creating something great with these podcasts. Oh, really? Keen to contribute and think of my birth really
effect. So now I'm going to start off with a little bit of a storey Now quit me and Christian know each other When I was when I was a student, Christian was one of my many fantastic supervisors on Helped and guided me. So it's a little bit surreal sitting with him today and being further supervised and told about the great work he's doing. And the reason why I invited Christian onto the podcast is I went to an event where Christian was one of the headline speakers, and he and he spoke a little bit about dietician lead Syriac clinics and how they've improved on improve the patient experience and helped us evolve are dietetic practise. And I thought on these podcasts I want to get people on the looking to innovate or improving, and they want to share their knowledge with other dietitians to help improve the dietetic profession as much as possible on helped us to influence each other on help improve each other and support each other as we as we go through this journey and try to help patients and clients depending on on which terminology. But thank you for
coming. Absolutely. Yeah. Thanks. And thanks. Thanks for that introduction. I'm glad you enjoyed that study day. And an absolutely I think this is why I'm here on the porch podcast to just be able to share everything we're doing. And I think we share that to the that we won't improve things, make things better on just share on DH. Just learned from everybody. So, So great.
Great. So I'm gonna start with a question that's asked it was asked to me on placement by everybody, and I think it's such an interesting question. Ask Christian, Why did you want to become a dietician? Why was that originally a thing that popped into your mind,
right? So I think it's the most honest and serious to say it never popped into my mind initially, which I think you'll find with with quite a few dieticians and and actually I had no clue about nutrition in all honesty with you when I when I went to university. So I'm I'm my background is, um it's it's make. So I grew up in Spain, my marriage in Spanish. I was there until I was 18. My my mom's a P e teacher, and I kind of knew I didn't want to be a p e teacher. But I always like sport. And I realised in the UK you could study sports science. So I thought, You know what I like sport. I enjoy science. Why, no, why not just give this a go? And it's kind of a bit of a change of scenery. So I decided Teo apply, and I got accepted into at Emory University up in Scotland. So I decided Tio packed my stuff and go up Tio to Scotland and Edinburgh, and I could barely understand anything when I got there and I do speak English. I spoke English, Spanish, growing up because my mom's Americans so So it was a bit easier, but still was a bit hard to understand the accent over there. But once I did the degree I got introduced to sports nutrition module, I just picked it because I thought would be something a bit different and actually really fascinated me. I started to play it a lot of stuff on me while I was playing football at university. I really enjoyed it on I met ah, dietitian who was a sports dietician and you told me that he first became a dietician, worked for the N hs, and then he started to do part time n hs worked a bit with sport and I thought I was kind of what I wanted to do. But I knew I had to be a dietician verse. So I actually applied Teo to do some further studies, and I got accepted to get the post graduate diploma at Leeds Metropolitan, which is now leads Beckett on. That was my original idea to do it to get into sport. But I soon realised as soon as I enrol with the course within a few months and you know, a few experiences on placement. Actually, I really enjoyed working with with sick patients, but also learning more about medical conditions on DH, seeing what roles we could. Havas Dieticians and I really enjoyed my placement. And the more I did it, the more I thought, actually, I think I really want to work within with the n hs on DH, then? Yeah, I think it was again. Ah, pure chance. Really? But I think I was in the right place at the right time with with some really good influences.
I think what I point out about that that is the great influences of something that really is important. I mean, throughout my time as a dietician, which has only been just under well, nearly just over half a year is those people that have been inspiration to me. And that's why hopefully you Khun b teau people on this podcast people listening because obviously our first episode was about student experiences, so we might have a few students still listening and tuning in. But hopefully, as we gather more, we can get more dietitians involved, MME or more of a discussion going and hopefully we can We can evolve this project further and absolutely I just wanna thank you again for taking the time. No one's getting them not get any money from me. It did get a lift to my house, so that's Ah, yes, I think he took that. That's any And that's the only Well, it's only advance he's really got on. Give him a lift home afterwards. So, um so So, Christine, could you tell me where you work, where you work? Now, you have to tell me the exact location if you don't want to. But where you work now, What area you workin on? Why you chose that area?
Yeah, sure. So I currently work abroad for teaching hospitals over in in Bradford. And I'm based at Bradford Royal Infirmary. So s so going back to what I was telling you before. So I graduated sports science. Then I completed my post graduate diploma at Leeds. Beckett on DH then. So at that time I was I was working in something, so it was basically working in leads. I was running event at night club. It was like an international night. We used to do on the reason I say that because it might might link in later on. But I think there's so many transferable skills in all the things we do outside of our placement on DH. Actually, I was working there for about six months, and then I started in Bradford, December 2015 on DH. I kind of knew I wanted to work in weight management on DH diabetes. I thought that was the area I wanted to work in because I had been more involved in sports before and I thought that was that was the main area liked on placement. But actually, what happened is I didn't get a job in diabetes and weight management. I didn't have a car at the time, and I was just working on that on DH there. Someone had been interviewed, got a job in the acute setting in Bradford on DH. What happened was that they also got a job elsewhere, and it was a quick period of time. So I was able Teo, um, I got calls from Bradford basically saying, What? You've had your interview recently. We can apply you. We can get you on role on board with the acute. Andi, I just thought, Well, you know what? I'll give it a go. Um, And again, it's just another thing that I did not have planned and it worked out on DH. Actually, I joined the acute thinking this was not the direction I wanted to start my dietetic career, but it was it was the best thing that could have happened to me. Really? Because I joined and I started to really learn about a lot of medical conditions. I really started to emerge in what with the team, too. Ah, Nde II was it was just so much learning. Really. And I think looking back, I've always wanted Teo. I've always been hungry for learning. Andi. I think that's why the environment was so good on. Actually, just I basically moved from little positions, you know, as a band five covering different wards on DH progressing on DH. You know, I realised Bradford is a great place to work because everyone's really positive and friendly. I've built some really good relationships and you could build some really good relationships on the ward. And you know, all these things, you know, they're not specific to the actual dietetic role, but they make a really big difference on DH. I was really comfortable there. Ah, nde. You know, just with all the all the friendships that you build on DH, the support that you get from management to So uh so I was quite happy in that post and then there's a lot of movement. So we've got roughly about 50 dietitians. So whether you work in acute setting, where there you work more within the community team or any other team, there's a lot of movement. So there's always opportunities within there on DH. Basically, just kept on taking advantage of some of these opportunities. So I worked a bit in surgical. Then I did a bit of mat leave cover for hepatology on DH a year ago. I got the great opportunity to start in the gastro position, which is where I'm currently at.
That's ultimately will want to talk about today the gastro position. And maybe you could set the scene for us. What was it like when you first started how we're gastro clinics Run where you were Bradford at the time. How will they run? What was it starting like And obviously we can compare toe where we all work and what's happens at the moment.
Yes, So we're basically we didn't have gastro as a specialty for dietitians. So So what? This meant that was that a lot off. So you're I. B s patient, celiac IBD and many other cultural conditions we're seeing kind of in a general clinic setting they were seeing by different dietitians on DH actually was. A lot of the care for these patients was inconsistent and usually inadequate to because we know that from other trust and that have gastro dietitians. These patients are so much better cared for. So we were really lucky tohave roper as our manager. So So one of our managers was able to get funding because he realised gosh was an area we desperately needed some some more energy and and support with and and he managed to get some funding. He actually got some funding for oncology post in the same year. So Bradford went, has gone from somewhere where there is not many specialties to somewhere that's developing more specialties now on DH. That's great because the team is growing, too, and were able to provide better care for. For these patients,
that's quite a common thing to happen for patients with celiac disease, newly diagnosed often are in a general clinic on DH. There isn't that specialist in port for them? Why do you think specialist import is relevant, not a donor. Let's let's not knock band five dietitians. I myself am one so I think they're great the best. But what? What do you think that's that specialist night actually brings to? What do I think it brings for the patient?
Yes, So I think I think that's a really good question. So I've been on both sides. So as a band five, having worked in in Bradford for you know what this is for years now. I think today's actually it's four years today, actually. Celebration for years. Unbelievable. So So, yeah, I haven't been there for four years. And just being doing this specialist post specific for celiac, which I'll talk about a bit later, I think the benefit is a lot ofthe consistency with what you're doing with patients over example for celiac patients in Bradford, they used to either get seen by a celiac nurse by a consultant. The GP might have had their care they might have seen by another health professional, or they might have never got referred to dietician,
so they won't see about dietician at all.
Some weren't. Yeah, we know we have some data to show that some weren't and that's down. Teo, the health professional, referring when they know that patients diagnosed you know our sometimes they'd get lost or sometimes they get referred into general clinic. That'd be a huge waiting time. So if you think of someone starting a gluten free diet, that's the only treatment that they have for the disease. So it's kind of a view. Had Tio so a new diagnosis for a disease and you had medication? It's kind of withholding that until they see a dietician. Sometimes on if they're waiting in this general setting their way in the same amount of time as other patients. And by the time they get to see us, you know they've got wrong messages or they've been looking on mine. They they're not falling the diet. They think they are on DH. Even when we saw them. You know, since they were in a general setting, we didn't really have that much support for them, so you wouldn't be as well versed in the diet. It also we might see them, then see them again in three months and then discharge him because we don't have capacity to keep their care and do an annual review. So we just kind of leave it to GPS. Andi just hope that that actually happened. So there was no real pathway in place knowing that there is some evidence out there to show what's best for these
patients. Yeah, especially. I think the gluten free diet can seem quite simple when you look at it online and you might look at it. But there are some vital things that could still cause symptoms, or one that pops to mind is cross contamination is often one that completely people aren't aware and it takes a really. It takes a skillful dietitian to do a thorough history to notice different places where that can. That can be the case. And if you're doing, say, ah, weight management diet history For a patient who's trying to lose weight or compared to a dark history for someone with celiac disease, they're completely different skills. I think it's it's difficult to jump from one to another, and it does require that that that specialist knowledge to be able to really dig deep, and I can definitely see why that would be a benefit to the patient mean we we see it as a benefit everywhere else. And yeah,
I think I think that's Bond having been in those clinics. I knew when a patient came to me that my I couldn't really address or identify compliance. Biggers. I was not really sure about a lot of food. So with celiac disease a lot times it kind of goes a bit by brand. So that's the way I cheque compliance not by brand but also with labels. But obviously patients don't come with packages of food that they're eating. So with a simple diet history of patient, we will usually say, I'm having this and it's gluten free. But you don't really have a way to cheque that on to make sure. And I'm not saying that patients lying. What I'm saying is that sometimes there's more detail on patients think they're on the gluten free diet, but they aren't on DH. Actually, a lot of times I would be like, Oh, yeah, just cheque with celiac UK or, you know, we just support in the best way possible, but going back to what you're saying about date history. So I've completely scrapped history. Well, not completely. I barely use them because at the moment for me, a much more valuable way of knowing if someone is either compliant and knows what they're doing is giving them a food labelling clinic and seeing how they deal with
that. Okay, Okay, okay. Really? This's for my own learning to sew. Just just run through that a little bit. How would that run? So if you had a food label like, try to imagine this right in front of us, we'll try and make it as best we can for the got food label. Yeah, so yeah,
I can talk you through it. So there's a few, eh? I used quite often. But I realise that with a lot of these patients, if you have something like an annual review, you've got 20 minutes and 20 minutes. I at the moment. I can talk a bit more about this later, but I'll be ordering their annual review blood because we have a dietetic lead Syriac service. I'll be checking the need a bone scan and get in touch with the GP. If if they do need one, I'll obviously be trying to cheque for dietary adherence with with everything they're doing. Then they've got So you got some clinical symptoms? They might come with other medical conditions that might want to lose weight so quite quickly in 20 minutes. There's a lot to deal with right there. So I realised, actually, by asking them with a traditional diet history, they were just saying, Ah, I have these have crisps or I'll have this and it's gluten free. So there's no real way you can verify if that is actually gluten free and a lot come back with symptoms and where you want to know is, Are the symptoms caused by gluten or is it potentially something else that's going on? So actually, what I started to do was try to get some food hours with some brands, but again, they weren't. They weren't filled into the best, because a lot of patients don't go out and think brands, do they? You know, you just you just get where they get so actually brought some food labels in, and then one of the ones that most commonly uses walkers, crisps. So what was used to be good and free? They're not gluten free now because they're cross contaminated. So when the ingredients part, there's nothing in bold, which would suggest they're fine. But below that, there's some allergen advice saying that saying that they're made in a factory that handles wheat and gluten. So what I do is I'll just give it to the patient or a last name, you know? Are you having the walkers crisps? They say that I know that they're either not checking or that they're unsure how to cheque. So and I think rather than then it can be quite judgy, judgmental. Sometimes you know the way. Yeah. You ask these questions so sometimes just giving them a food label toes here? No, only what the problem is or what it tells you why it's a problem, because you can see where it's going wrong for them. You can see there may be missing out something or they're thinking there's some wrong allergens there or there may be over restricting, which I see that some of them are kind of that Scott Sawyer. But actually that has no gluten, so you can see if they're either over restricting or under restricting.
And how do you pick the food label because you said you used walkers crisps? Do you just use walkers, crisps everybody, or to use all the brands of Chris? So
s so I've got a combination of things, actually. So, uh, s so you know, one of the things I also changed was the questions I ask. So so I have some labels there on I give you some labour. So if they seem quite clued up and they tell me, you know, I don't need anything with may contain, you know, the are there, tell me I know exactly what to avoid. Sometimes it just ask them. You know what? What you looking when you're looking at a label? What you looking at? I tried to reproduce what happens outside of clinic because that's what's going on. Really? You know, in supermarkets, I tried to find out if they know how to identify gluten in the supermarket if they're trying identifying it when they eat out or, you know, identifying how to avoid it in the household with cross contamination. So I look at those three areas and on and then I have some labels. So sometimes I've got conflicts like Kellogg's corn flakes, for example, I say, you know, you eat, these are you've got. Sometimes I I have the Morrison's cornflakes, too, because there's that example with barley malt extract, depending on how much gluten is used it sometimes suitable. So this tells me a lot about what they're doing, and a lot of them again are over restricting nights. And I'd say about 80 to 90% aren't completely certain or how to identify gluten. So since there's not certain and they're not sure how to double cheque, they're just over restricting most of them. So I think part of our role really is. Most people think we need to restrict them in terms of make sure they're not eating the gloom. But part of our rule is really to make their day it more
inclusive. And how did the patient react when they're say they're over restricting in certain ways and you tell them that soy is OK or this thing's OK, that
actually buzzing. Yeah, so So And I think this is This is so important because if you know, if you know that someone is not doing the proper cheques on DH over restricting, then the adds more burden onto the diet. So so a lot of what I've learned over this last year is that actually we get so much further with patients when we kind of come from more empathy and understanding with them. I think I've done the gluten free diet for a period of time. I'm always aware of things that are going on, but I think it's really challenging and restrictive diet to do for life. So we have to make it as easy as possible for these patients. And, well, I often share with them was some research that was done a few years ago where they had a number of patients with different medical conditions, and they got them to rate the burden of their disease on Interesting enough, he had things like I b D I. B s on and quite a few other medical conditions and can't recall all of them. But actually, celiac disease came second Teo end stage renal disease requiring dialysis in terms of the burden of the disease on Do you know, it was more of a burden than things like diabetes. But the reason behind that is because it's a lifelong restriction. You can't hide your disease from anyone when you go, Teo. You know when you go to a friend's house or if you're eating out, you've kind of got you've got to say You see that? Give no, you don't know. You know, you've got asked for a gluten free diet as hell things that made so a lot. This this puts a really big burden on people. You know, if if you have and I'm not saying people diabetes, that it's not a burden. But you know, if you have diabetes, you can have a treatment and people don't need to know about it. It can be in a different room, you know, with celiac disease. Everyone needs to know on. This is a really big challenge for people. And Andi, even down. Teo Difference cultures, ethnicities, how people eat it. It's all you know. We all eat together, don't we? And on and you don't want to feel excluded. Most of these patients will go out, and in Bradford, a lot of them have a lot of challenges. Biggest is not correct. Allergen labelling. They go out, they get dismissed, they go out. They've been promised this gluten free options, and then they get given some fruit. I think there's There's an episode of The Apprentice recently where that happened to Andi. You hear all these storeys and you you realise how challenging it is on a daily basis for a lot of these patients because they're no eating as a Fahd's. You know, the restriction is for the health. Yet it's not really well catered
for and and especially in restaurants and things like that as the Apprentice. I mean, it's if if the dietician is not willing to share them empathy and understanding, then who who is? Um, Yeah, Andi, you mentioned a little bit about some of those things that the dietitians doing that Maybe no normal things for a dietician to due to the bone scans and those sorts of things. And obviously that's the That's the main reason we wanted to discuss today sort of the dietician lead aspect of it. And how did this How did this come from to fruition? We're doctors willing tto give up there, give up their patients to a dietician. I mean, it feels like you're stealing from them. And how did that How did you How did this off dynamics of that work?
Yes. Oh, it's again really, really good question. So I kind of thought that the star I was thinking, you know, with this dietetic Let's see. Iliac service. I'm going to be seeing a lot more celiac patients on DH. A lot of these were under consultants, I think, I guess, for a bit of background. What happened before was that they were either under the care of the consultant or they were under the care of a celiac nurse on what happened was that celiac nurse left on DH. We also we had an opportunity to to take over these patients. So actually, we were gonna take them. You know, it would result in them in taking them from the consultants. But actually, I linked up with with one of our lead consultant, Dr Raab, who is their lead consult for celiac disease now. And he had the care of the overarching care of these patients, and he was actually really keen on the idea on DH. He was quite happy with saying, Well, actually, yeah, White. Why don't we show you how to order Bloods? And then since I realised well, I can't really interpret bloods, then I could run it through Dr Robert. They're out of range. So? So I think the important thing here is that it's not one person doing everything. And actually, it was me doing the dietetic bit with the additional bloods and then bones, Can we? You know, we agreed with the consultants what our criteria would be. And it's not me ordering its just me asking the GP to do it and biggest. Sometimes you need some more medical follow up with Dexter scans. And actually, what I did was discuss some things with Dr Rob and then we took it. Tio all the consultants, we've got 10 consultant gastroenterologists in Bradford. So we had a meeting with them. I kind of shared what I found, what I thought I could do. And I tried to really get a consensus with him. And I think what this gastro service has done as it's brought us closer to the consultants were working in a much more MDT fashion on there. Seeing what we do there, seeing how we can help worse thing, how they can help on DH, we're both doing things that were kind of more suited to really, because whilst the you know consultants are are a really important part and crucial part of this celiac service, they they only could do so much with diet, and I only can do so much medically or with blood, you know. And if someone comes back to me and they've got these ongoing symptoms, I know there's no gluten or looks like there's definitely no gluten in their diet. Then that's for the consult. Went to manage really on DH. I think we've got that really strong MDT now on DH. If a patient comes of symptoms, it gets address really quickly because we know straightaway. Look, it doesn't look like this glue and in your diet, and the consultant can order some extra tests or wherever needs he's doing
so. The most common reason for symptoms is often to do with gluten in the diet on DH. Being dietician lead, you're able to exclude that straight away before it goes to the consultant. Is that correct? Yes.
Oh, so basically, there's there's some date out there. Onda lot of Sheffield actually have a lot of data on DH. The roughly There was some in the Paris Conference recently on day, actually tweeted about this because because I think we have such an important role here. So roughly about when patients come back with symptoms roughly about 20 to 25% can be due to ongoing gluten ingestion, which they don't know about. Another 20 to 25 potentially can be I. B s symptoms on then the rest can be other medical conditions or potentially refractory celiac disease where they don't respond to the diet on that requires medical treatment because not everyone responds to the gluten free diet. So as dietitians, then we can really influence 50% of that section. Weaken, You know that kind of 20 to 25 where it's down to glue and ingestion on the I. B s ones where we can really help with some I. B s first line or potentially Ford Maverick. If it's indicate for that patient Andi What happens then is that we avoid the need for that patient to go for a repeat biopsy. Because I repeat, biopsy is the only way we know 100% or sometimes even. You know you can't read 100% but actually that's the only way we know for sure that it's not the celiac disease that's causing these problems. So now a lot of consultants they're doing is they're the referring say, before I consider a biopsy. Can you assess this patient on? Actually this. Quite a few patients where they come, they're ingesting gluten and voluntarily, Or there's been other ones where they've come, and they've got really good compliance habits. They're really aware, but they're having a lot of foods that we can try to modify on. Then they come back and the symptoms of resolve. So so I think we're doing that in a timely fashion. We're saving money because the biopsy is not cheap. Andi. It's for a patient experience. Like who would want a repeat biopsy? It's It's unpleasant and in comes with risk to that patient.
Okay, it seems like you've got a really, really good team, and it sounds it sounds really good that they're consultant was really open. And Willie, is there any way any tips you could give anyone else? If anyone else is interested in doing this anyways, they could approach the consultants or any sort of angles that you can usedto empathise with their point of view or anything. You've learned about the consultant's role that maybe you before or dieticians in general may not understand. I think I think a
really big part of it is is really showing what we do. Finding opportunities to show what we do. I think you know, when you come across when you whenever you're trying to change something, whoever you're trying, Teo change in terms of you want to change the perception, they're used to something different. So So I think for ah, lot of doctors, they might not really know what we do in depth. And I think you know, for example, with with our electronic patient records, this has been something fantastic. Biggers. Actually, I can We can send a quick message to consultants or we can send them our documentation. So actually you can I can send them a message to say, Look, I've gone through this. It looks like there's no gluten and the diet could potentially work on this. Or I could say to the consultant, for example, looks like it happened. They had these bloods. I can do it so we can take off jobs off these consultants so we can make things easier. We can make things quicker for the patient, and then they can see our full documentation and see the depth of our analysis and how we can help.
Okay, I suppose other people could do that. Maybe it's not as slick as the electric patient records, but for those who aren't using it could do emails, that kind of thing, and absolutely becoming closer with the consultant and being ableto help them to understand your role. And
yeah, I mean, that was just one, but definitely spending time. So so shadowing them. So So one of the things that that we started to do. So we had we We basically have two gusher posts. All right, So So even within gastro were not able to cover everything we want at the moment. So we're working with developing r i B s pathway, but basically there's me covering celiac disease on DH. There is my manager, Sophie. She is she's covering IBD on. Actually, she started to sit in with a lot of consultants, and then they can see how quickly they can get a dietician involved and how much we can help on DH. You know, that just raises the profile within the team and the awareness. And now you know, they would never be thinking about a dietician. The room previously, But when you start to spend some time, so I think it's not expecting to think things to happen. It's taking control and actually making the consultant see what you do having that presence, whether it's on the wards, whether it's in clinic shadowing them, spending more time with my men will see it and they'll eventually buy into it because we'll see that how much we can
help. And I think that's my That's my experience with consultants as well. Especially especially when I first ever first started as a dietician. They were quite scary. You already had a nervousness of talking toe to other people. It's off, build up courage, but they were quite nerve wracking. However, I have had some some clinics where I've been with a consultant, where you've you're with them and you're able to review things of patients, and he'll explain things to me afterwards. And he's quite he's quite open toe here about my position in the on DH. I understand more about what dietician does, or he might ask me questions and it's off. I think that is really important for us to help consultants and other health care professionals understand exactly what we do because I think it is a little. I think it's a little bit hard to understand another person's job role. I think I don't understand everything every age. Peters. I think I do, and I have a perception about it. But I don't think I truly know exactly what a physio does on their day to day job. How How would you know how you think? I mean, I've read about them. I've got a friend that's a physio. We talked occasionally, but we don't really know
exactly until until you spend time with that person, there's no way. So it's the same for me with consultants or for me to know how they were managing C lack patients or what was happening with CD actors. You know, you only know when you spend time and see what they do. Andi. I think that's the key thing. So where when we allow the people to do that, we have that physical presence, they're more likely to see it, and the benefit goes both ways because now if I see what consultants are doing, I kind of know what sort of medical decisions they make and I'll ask better questions for the patient so I can feed that back to the consultant on DH. That's been a lot off. My learning this year has been around that. How? How can learn more about what needs to be going on. Medically, I'll never be a doctor, but if I come, I'm on the same page. It makes everything of the easier.
Okay, it sounds like it really was when all swimmingly and perfectly, but definitely didn't. Maybe you want to go into some of the things that maybe some of the challenges that had to be overcome, or things that, faced with all the troubles that may have, may have caused problems along the way or had and how you overcame them. So,
yeah, I think, based on on this last year, it's kind of started seeing Patients is part of the Syriac service in December 2018. So it's kind of a full year, pretty much on DH. That's it's a really good review point. Their timing with this podcast is quite good for that, I think, and actually there was loads of challenges initially, so we had no clue about how the whole bloods would work. We had no clue that consultants would be happy for us to do the Bloods. We also had the big challenge where we have this Elektronik patient record, and it's not where you were. You tended to do outpatient stuff, so we didn't really know how the system works in terms of booking patients to on DH. That was a really big change. So we went live on that because that's how I could order Blood's on this system to on DH. We had loads of glitches, learning, you know, questions that couldn't really be answered because we're doing some some new stuff. And that's what happens when you do new things. You don't always get the answer straight away. Andi. I think a lot of it has been down Teo Teo that kind of resilience and looking and trying to see how we can evolve our roles to understand things better and change. So I think one of the big changes to mention, for example, has been our admin staff. B r. I. So they've really evolved with this and they've really, really helped us, too, in terms of making this transition a lot easier in terms of understanding, flexibility when it comes to booking these patients on all the challenges within the developed systems that we have on DH. They've changed the rules from something that was probably a bit more straightforward before when we had paper to something. Now that is a lot more open and challenging and they're loving you. So yeah, I think a lot of the suggestions I was giving initially was like, How are we going to do this? How and And I think there's there's always that and and I like so I quite like, you know, obviously improving things and making them different, and sometimes I might have a bit of a too much too idealist way of looking at things. But I think there's there's so much stuff that can actually be done, and it's about having the right people on. I think, within within my department. What's been crucial is is also having to two managers with Roper and Sophie, where whenever I went to them with an idea thinking, you know, how about this? I never I have never heard of. No, it's always been okay, let's explore it on. I think that's really helped keep momentum going and and that's what develops resilience. When you know you have a team that really supports you. Then you know you know there's obstacles, but you know, you you overcome them. So you
say you never heard of No. So you've been able to do everything you've ever wanted. I wish. Es What do they do? They go. Okay, Cristian, let's explore this. This's realist. Make yourself realise that actually, that is not great. Andi
Thinkit's about so it. So I'll come. I might come up with a lot of, ah, rash ideas and things that that might not fit in, but But really, it's about putting that back to me. And and it's not to say that they've done this, but a lot of the times what they're doing as managers is trying to listen to. My challenge is seeing how they can help and help me prioritise, because that's something that I've really learned this year. And it's been like, you know, when you have a whole service, that it's a really big challenge. Biggest. You can work on so many different things, and yet you're gonna If you do that, you spread yourself so thin, Lee, that you won't really achieve what you want in any of the areas on DH. That's one of the biggest lessons. And, you know, that comes with one of those that those challenges was Teo just really, really, really focus on one thing at a time, and that's what I'm doing now and and it's working. It's working. It works a lot better for your mental health, but really, really thinking, you know, if thinking more strategic strategically and thinking realistically, what timeframe do I have? Do you know, do I dedicate these next few days to this? This next week? What's going to give me the best transfer? And I think something that's really helped with these challenges to has been some of the training that I've been on. So it's a lot of them have been on some training for quality improvement. That's been really help. That's been really helpful. And some change acceleration, too. On this is something that's really good in Bradford. You know, it's it's no at dietetic level. It's at the whole trust. It's really
was that trust level training or
yeah, absolutely So so a lot of these a lot of these training sessions have been a trust level. So we've gone on training sessions with matrons to and and other stuff from from across the whole hospital on. I think this is this is the important thing. So So it's good to have all of this energy where you want to improve things, but you also need to be strategic. And I think having that support trust level and the departmental one, you know, I think the good thing is that in Bradford were really keen on getting people on board with that. And you know, if you know how Tio, you learn a bit more about project management. If you learn a bit more about quality improvement tools that you can use things to really narrow down your aim and your objectives and and how you want achieve things in what period of time, you're more likely to become more successful at whatever you're doing and developing and make and managing to implement wherever, whatever
that is. I think what I got out of that was it's the whole team and focusing on the different trainings that on the training's that you might not be, I don't know what the word is not interested in sound a bit more dry or whatever this or whatever this. But I think you were able to see how things were implemented, how things were done. And also you're able to spend time with the matrons as well and understand their point of view. And it helps you build that broader picture in your mind instead of just thinking about you're in your little dietetic office. You're talking with a bunch of dietitians. It's a little bit the group think scenario. Yeah, I think offered it does help us to venture out and talk to other people. The aren't dieticians and help them influence our own practise and bring in ideas from outside.
Yeah, you see the wider challenges of the trust, too. And I think you when you when you see all of that and LA times, as you say, we could be in our dietetic office. But actually it's so important. Tio, have connexions outside of that, see what happened and see how you can feed into what the bigger trust is doing. And you know a lot of what we're doing with the seat back services actually using resources better because we're saving consultant time we? You know, we are cheaper than consultants. Yeah, well, I wish it worked that
it is so So we're cheaper. They're consultants are receiving consultant clinic time because I can take care of these patients. But it's not coming at the cost of patient experience because actually patients for your So we're getting a lot of them tio fill in feedback forms and a lot of them. What the scene is that it's a really thorough assessment. They feel their needs are met. And actually, since I could just message a consultant, if there's anything medical, then you know we've got their back basically.
And how do you do the feedback forms just out of curiosity, and it's not, but things do you paper or how does it work? So
So it is paper looking at I've always been looking at since I started a ways of doing it. Electronic papers a bit more practical now, but basically what I did is I I developed a specific one for our gastro clinics on DH a lot, so it's got like, a confidence scale of how confident they are managing their condition. Before this, I see a dietician and after on this really helps us prove whether our interventions, working or not on DH, you know, we ask him a few questions about what their learned, what their take home is for from that clinic. And if they've got anything they want to feedback about the clinics, There's a few other questions, but not show. That's it. And then I give them an opportunity. Tio. They're handed back Teo reception where they were waiting. They can send it in an email or if, if not, what they could do is we give them a prepaid envelope and they send it back in the post. So really trying to make it as easy as possible for them. Andi, I guess you know, having having the email communication, which was something that that managed to sell. When was it? A few, like a few months ago? So we actually managed to get information governance onboard was setting up some email communication on that has really facilitated a lot of things.
Email communication with patients. Yeah. On what? How is that? How does that help to just do you get a load of questions from them every day, Eyes this crisp okay. It's Tesco brand. Okay, Is Morrison's brand okay? Well, the Aldean banality today, they're a lot cheaper. Can I have this one? The runs are available.
Yes, s o. I originally thought that I thought, you know, I thought I'm just gonna get absolutely bombarded. And the reason I said up was to get a bit more information. You know, when when a patient comes to clinic, you've got 20 minutes. It's quite hard to cover everything. There might be additional things, and some of some of the main issues for me was getting them. Tio download the celiac UK app because the celiac UK up is a really useful way that they can cheque and make sure something's gluten free by scanning a barcode. So if I know they could do that outside of clinic, identifying gluten becomes so much easier. If not, they need to go into this minefield of labels where it's really hard to identify. So for a lot of these patients were coming, and then I was, you know, telling them all, you know, just download the app or download in the wrong app. They weren't even sure where to go or what to do so. So I think email helps us either sense. Um, Elektronik resources, some links, which could make things a long mirror. They can send a food diary, too. So when they go, if they couldn't remember brands or anything, of nothing's clear from my assessment. Rather bringing them into clinic with a food diary, just get them to send it and they can send it in Elektronik Lee to a lot of them. So when I'm feeding back with blood sputum and he's a big one, so I can just send them an email saying, Look, your blood's because they do the blood then and there a lot of them on then, since since they've gone, obviously, once I've received the result, I can just send them Nemo saying, Look, you know, you can take this amount of vitamin D, so it just makes things a lot easier and seem for the feedback. And it's also kind of fed into what what I've tried to restart, which is the ceiling support group, because that disseminated on actually, with some of these emails, we got them. Tio initially say consented. They were happy to receive information about it on DH we had our first see the EC support group in. It was about Yeah, roughly about a month ago.
So Yeah, so that's Ah, that's yeah. So maybe that holds Lead us on to what we're gonna talk about next. What's what's for the future? Is that this celiac support group going to extend or how is that? How is that room?
Yes, So I think the future, that zone. Interesting question. There's so many so many possibilities. But I think, really, this year's given us a really good idea of what we've been doing. Well, what we can do better what we want to focus our energy on. I think I've seen, you know, linked to that that I was saying about celiac UK and the app. And I think so many patients don't know about it. I'd say probably, yeah, what? One in 10 come to clinic and they're already using it on. Actually don't realise that by using it, their diet becomes less restrictive. They identify gluten. They can shop outside of the gluten free section, save money. You know, it's something that a lot of people are still there, still spending more money than they need to
do so is that app free to download cannot come. People are listening right now. Can they download
the app? So where it's not free, you have to be a member of Seal UK. OK, unfortunately, so So you have to be a member in
you know, for most patients, that's about £2 a month on DH. Actually, with that, what you get is you. A lot of a lot of patients will probably save more money. So again, I'm not doing any plug for seat back again. Don't get any money from celiac UK, but a lot ofthe patients feel that's worth it. Because actually, you know things like conflicts. Sometimes you could just get naturally gluten free ones you don't have toe by them. Same as Chris people are getting. Are you no mayo? Ketchup? You know, Megan ketchup. Sometimes they're a bit easier, but but for a lot of patients, it's kind of is a mine field out there. It's really challenging, and something that gives them a cheque in real time can be really helpful for them.
So any dietician, if they wanted Toa have a go with the app and use it. Do they have to join? See that UK and pay yourself so No,
they don't. So, as a health professional, it's free. So I have a membership which is free. So Andi think anyone working in Seeley actors, even if you're working in a general clinic, you know where you don't have a specialty. That's one of best things you, Khun Dio, to encourage patients to do to. You know, there's some other APS out there. I'm not that sure they give you the right information. However, a celiac UK and if also the patients are looking at information on Syriac UK, it's reliable information. A lot. Patients who you know are looking out on other websites were just getting wrong information. You know, a lot of them are seeing spelt and saying, Oh, you know, it's gluten free on There's so many other things and actually spell has gluten in it. So So, Actually it's It's just a consistent on DH goods Web page Teo Same force patients to, and if they can use the app, then it's easy outside.
Over, I will put a link to the APP in the show nuts description. I think it's called on apple podcasts and everything else is show notes. I think, Yeah, I can,
I can put if you want. I can actually give you some other names of some other
Absolutely. Yeah, Tell me things. What? What other things do you think? A useful resources for dietitians to try our or yeah, definitely patients to use.
Same. So it. So there's there's a couple of other app. So when one of the ones actually says on it, What what you need to avoid for the gluten free diet and you can just click on a different language and it says it in different language. It's hard. Yeah, so it goes down to the level of cross contamination, everything. So when patients are abroad, they can just do that click on a different one. So one of the first questions I asked were newly diagnosed patients is you know, you travel and a lot of them come back with experience of places in Europe. So I myself from Spain, and I think Spain, the label is fantastic. It's has seen gluten on a lot of places, but it's just really inconsistent with different countries, so this helps them to be if you're, you know, feel a bit safer when they when they go. Our
Professor Lee, to show it to the wait staff people in even supermarkets and stuff. Yeah, yeah, they can feel a bit reassured. And that was that. That could be a thing that even in the past them I thought they had to bring their own food on holiday with them or something like that, I'm sure.
And I think that's and that's still the case sometimes. Unfortunately, some countries, you know, it really isn't that good, But actually, a lot of this gives them more control and confidence. And, you know, I've had patients. I don't go on holiday. I just can. And I'm like, Well, why no, you know, and because they just really believe they can't. And that's the way maybe it was before they were struggling with it. So So again, we see all these patients, and I think when you were in that study day, you know, one of those slides air users, that tip of the iceberg where we just say, And when I came into the job, I was thinking, you know, this will probably be kind of straightforward where you're just telling people to avoid glued on. And then I just realised that is just not the truth of so many layers behind below that is in
there. Is there any other app? She would suggest?
Yes, it was. Go through them one by one. Yes. Oh, it's so basically I've said that gluten free food checker is the main one from Syriac UK. They also have gluten free on the move on DH. That's from celiac UK, too. And that's for identifying restaurants within a radius that can cater for gluten free options. But this these air restaurants that have the accreditation from celiac UK. So those two come with CD Acq U K then Dr Shar have a free app also, and they have a little map which can show you places where you can buy gluten free food where there's some like bed and breakfast or hotels that cater for in some shops. And they've also got a section for when you go abroad, where they've got some videos in different languages and you could just play the video or it's written in a different language, which is quite good for when they're going abroad. also. Yeah. So there's all these ups and then, you know, with with the new diagnosis patients, what we do is we We have group sessions and what I do is actually bring out restaurant pages in in Bradford's. We just kind of navigate with them. So again, we're just trying to reproduce everything and we get the app sound. We get them to use the AP. So I give them a labelling activity, get them to see if there's they think there's gluten and then I give them, eh? So we've got the library's been fantastic. They've they've rented out a NY pad for a so so then I get them to use it and they can scan it so they can actually see how it helps. OK, so you
don't have toe, make them download it on the phone. And then they think that I'm sorry. I forgot my apple password.
Exactly. And I think that takes a lot. I'm actually we just got the app, we show them and they give them clear indications. Why do do with patients? So I actually realised that a lot of them were going away. There was doing down within the wrong up. So for a lot of them, what I say is, I'd rather you take two minutes now to download the APP. Make sure you have the right up. If that's what you want to do, and then you can register when you
get this unit is a group, it's off more time efficient things.
Yeah, and I think if you actually take 23 minutes for them to download, that's one of the best things they can do because it makes it a lot easier for when they go because of another probably gonna come back and still might know understand about labels. And they might still be included so they can do that. Then it's It's a big
So is the initial appointment donors a group session and then follow up Sedona's individuals.
Yeah, so were we realised that actually, we were struggling with capacity for clinics, and actually, a lot of this stuff is common. So we focused. The group's on giving that new diagnosis information, but also a lot. We can focus a lot more on the practicalities because there's a lot of learning between patients. Some of them have already started a bit on the gluten free diet they can say off Tried this restaurant. You know, our I've tried the supermarket, you know, in Bradford we've got a really big South Asian cohort of patients, so actually, they might not be shopping in Tesco Morrison's. There might be some different shops where Europe might not work. So so it's really important that we cater for these patients. And actually, when when we have different patients in the room, they can really feed off each other's calls, encourage each other. I think, you know, you have probably seen from a behaviour change point of view. Motions happens when you have a community, but yet we have these patients and they're kind of coming to clinic and then off they go on their own when they're nearly diagnosed. So actually we create a bit of community and then we've got that support group. Andi, this is linked to your previous question, which I haven't fully answered about the next things coming. But But we realised that actually, we need to help these patients to create a community biggest if we just leave it to them, Then there's a lot. There's a lot of challenges on DH. Actually, if we if we're part of that on, it's something that maybe traditionally would we haven't done is dietitians. But I kind of just realised well, we're not really achieving what we won't achieve, which is compliance and understanding the gluten free diet. We're not supporting them in that
way. So is this support glue group led by a dietician, or is it led by an expert patient? Or how is it How is it led? And how'd you see that? Working the future. So
originally it was It was just me discussing with patients and seeing what patients were keen, and I just I just kind of sent the email out. Everyone we had consented. Andi Andi, I think, was about five or six people came. But my idea was, you know, just a handful of people who were keen in the room. Let's see how we can get it going again. So I was lucky enough to encounter the person who was previously running it on DH. She had some really good ideas, too. On DH. This this is the important thing. So it's kind of maybe kick started a bit by me getting that momentum but I really wanted to be patient lead because end of the day they're the ones seeing everything. You know, I I mean clinic. I don't live in Bradford. You know, when I got in Bradford, we go out for a meal. I'm always out a bit on the lookout, but I don't live there. And I think the's patients have so much knowledge that I don't have. And when it's patient lead it. Also. When they take that ownership of it, it becomes so much better. So that's what I'm really trying, encourage and quite a lot are keen to keep building
that. Yeah, I think a lot, A lot. A lot of times we say things like Obviously one of the slogans is trust the dietician and it sort of gives the impression that we know everything. You know, obviously we know a lot of stuff from a very clever you know, I'm not saying that we're not very clever. However, it's important to understand that a patient knows their experience the best. Yeah, I think it'll contacts and Christian is on the look out in Back in Bradford and around Leads about is probably in supermarket far more aware of gluten free products and myself. However he I don't know if he does this baby. He doesn't go around every single cell phone pick up every single I am and cheque if it's gluten free every time a ghost there we
haven't seen in action every time he goes
toe as the robin toe, every single supermarket or what cuisines from different countries. And that's sort ofthe knowledge that's available from patients and people who are actually experienced the condition in their daily lives. Christine is not able to offer us a dietician, and I think the recognition of that and I think in lots of different areas. The recognition of that is is vital. Yeah, I
think so. And it took it, took a while, And I think you know, once you realise what you're doing in terms of the information we're giving patients, you know they're coming and they're getting a lot of the same information. And actually, when it comes from one patient to another, it's a lot stronger then from a health professional, I think on I think patients have this, you know, they've got such a good room positive role in encouraging each other, and we can just achieved better outcomes like that.
I think I'm gonna ask a question. That's really, really tricky. But hopefully it's Ah, it's okay. So, working on support groups and things, it is wonderful. However, Brad, if it is a nightmare to get round okay, it's tricky to meet all in one place. You'll only get a certain type of person. Is there any? Is there any scope or any thought about online thing or online community or online support group anything like that in the works? Obviously, it's quite it's quite difficult with rules and professionalism and different accounts or anything like that. Is there any sort of thoughts you've got on that or any ways that it could be implemented? Or definitely, I
think I think that's, ah, great point. So it's good to see that, you know, without we haven't had a discussion about this before. But you're already on that same wavelength and thinking about that on DH, That's it. We've kind of got to meet the demand. There's best possible on DH. Yes, absolutely. So when when we meet up, we might meet up in a specific area. It might not be a good time on DH. I think this is the way forward, really, where we can do a meet up for those people who find it beneficial. But for people who can get there or people who wanna support to be somewhere as soon as they're diagnosed, they can look on. And that would be something like you're saying so potentially, like like a group or something that's led by patients on Facebook, whether it's on an online platform and this is definitely something I'm keen to explore, and and I think with this we've always gotta look for the governance behind him with our trust. But it's something that you know. We can't deny that this is. Patients want support on their phone. So Samos Yeah, you know, it's just the way things are going the way uber developed while people wanted a taxi to Beall order a taxi from the phone. It's just convenient. So when you're newly diagnosed, why shouldn't you be able to have that sort of information so you can get some information from celiac UK? But actually what about some of the practicalities about restaurants where you can eat and that's where something like a support group online where people are sharing. What they're finding is just there, and and, you know, this is something that's really useful I've been. So I've been in touch with Marianne Williams and Leah, two in down in summer sets, and they've developed webinars for patients and they've developed the disease, too. And actually, this is I think that's the way we're going forward because it doesn't mean we're not seeing these patients. What it means is that we're making information more accessible on they can still come to clinic, and we're kind of helping them with a lot of the basic information, which is going to be useful. But actually the more complicated, challenging things we've got enough space and time to see them and in clinic, too. So it's kind of rethinking about how how we do things
I think is a really good point, constant evolving and how we conclude technology and that in our practise and help patients and stuff. And obviously the Facebook Group is what what everyone really wants. And I would say information, governance and so off. Keeping personal life and professional life separate is there is a tricky part But I think definitely having that support group led by patients on having an outgrowth of that toe have that support group on Facebook. Obviously, they wouldn't get that dietetic import from the support group, which I think would be helpful. But obviously it would be a big time commitment for a dietician to answer every question on a on a whim from a patient group. But I think looking at ways we can implement that in a in an effective way might improve accessibility to services. And obviously if we improve, accessibility was gonna be more busy. But obviously it provides better patient care better out. And I think
it's something that he needs to be thought of and, realistically, patients. So if you look at Celia, celiac disease, patients will be. I'm getting diagnosed every year, eh? So we're following them every year, and we're giving them a follow up. There's just more and more patients at the moment. It's just we just have one dietician. Hopefully that will grow. But there's only so many dietitians you can get and actually having information that's accessible for these patients, and they can still get their bloods done annually. That's That's the main thing on that on that, Actually, if we help with them and educate them similar to what you were saying about the support group or the Facebook group, then if the really well educated and well versed in the diet, then they can help each other. They don't need a dietician for everything. A lot of the things that we will say if they're well versed with the diet, then they'll be able to help and support each other. Nothing sometimes potential. I'm not. I'm not saying we're doing this, but sometimes we might think, or we can't trust patients. Teo, give that right advice. But if our work is going into helping in these support groups and making sure the right messages are shared, then that echo just get stronger. Whatever there is there, it's getting echoed. So it's about being in the right position. Teo
help that that makes sense. Yeah, So as we're coming up to the clothes, is there any other resources? You khun, you can just sort of quick fire at people or any sort of extra things that would help dieticians in practise or even patients that may be listening. Okay,
so so I think from from a celiac point of view, I think Syriac UK, as I mentioned, is the go to place. I think the app is really helpful, I think, for for patients, you know, with you, they often might get sign posted celiac UK and not know where to look on there. So so is worth either contacting celiac UK on DH. It's also worth downloading the app for the reasons I've said. I think that's the first thing most patients would benefit from if they get newly diagnosed on getting their information from C Block. U. K's, I think is the most important thing because actually you start getting information from other places before you see a dietician, then then it won't be as beneficial and you might get really mixed messages. I think the other thing, which which I raised when when you came around to it, is if you have sent symptoms to get tested on celiac UK. If you think potentially you might have seen actors either. There's a chance there is a little questionnaire you can do, and you can take that to your GP. I'll tell you a bit about the likelihood of. So it's about raising awareness. And when you get diagnosed getting the treatment from the right person. So if you can make sure you see a dietician, then that's the best thing you can do. Really?
Okay. Thank you. Thank you very much. Thank you so much for your time on DH. I just wantto conclude with hopefully we'll have more podcasts from experts like Christian himself. And on this podcast, the views on opinion shared on it are the views of myself, Aaron, on the views of Christian and don't represent any sort of overarching trust organisation that we may be affiliated with all work within our spare time and there their shared from our own experiences on our own point of view and obviously the recall of our memory and those kind of things just just want to make make sure that's clear in here. Okay, Thank you very much. Have a good thanks.
A liar. In
Thanks for joining me this week on Dietetics Digest. Make sure to visit my website a dietetics digest dot com. We can listen to the podcast or why not consider subscribing on apple podcast stitches, smart radio Spotify or basically, just ask Alexa and you'll never miss a show. And while you're at it, if you found this show valuable, you could do one of two things. Firstly, if you could leave a review on the podcast up, you're listening to maybe the apple podcasts or stitches smart radio. And if you could tell a friend about the podcast, that'll be really helpful to help grow the podcast more. Thank you so much for your support and have a lovely week day wherever you are.