Ep 19. INNOVATORS - Driving collaborative care for patients with HLH

What is the HLH Network and how is it improving patient care? 

In this inaugural episode of our Innovators mini-series, Dr Alexis Jones, Dr Matt Szeto and Dr Denise De Lord join Dr Lizzy MacPhie to talk about the Haemophagocytic Lymphohistiocytosis (HLH) Network, which won a 2024 BSR Best Practice Award. The network brings together specialists from rheumatology, haematology, infectious diseases and more to provide rapid collaborative care for patients with this challenging diagnosis.  

Our guests discuss the challenges of diagnosing and caring for patients with HLH, how they set up their own MDT networks to address these challenges locally, their Trusts’ improving survival rates, and the new GIRFT HLH pathway.  

Want to find out more? There are lots of HLH resources to explore:  

• Find out more about the team’s award-winning project 
• Listen to our HLH spotlight podcast for essential practical tips from Dr Jessica Manson
• Download a copy of the new GIRFT pathway and guidance document
• Visit the HiHASC website for more resources

The countdown to #BSR25 begins!
Our full Annual Conference 2025 programme is now available. Browse 100+ sessions and get ready for an inspiring event.
 https://bit.ly/4bGFX1N

Thanks for listening to Talking Rheumatology! Join the conversation on X using #TalkingRheum or tweet us @RheumatologyUK.

BSR is the UK's leading specialist medical society for rheumatology and MSK health professionals. To discover how we can support you in delivering the best care for your patients, visit our website.

Transcript

Voiceover: You’re listening to Talking Rheumatology, brought to you by the British Society for Rheumatology.  

Lizzy Macphie: Hello and welcome to this special series of Talking Rheumatology, where we’re focusing on rheumatology innovators. I’m Lizzy Macphie, consultant rheumatologist and quality improvement enthusiast, and over the next year I’ll be meeting some fantastic members of our rheumatology community to find out more about their examples of best practice.

So this week I'm talking to Alexis Jones, Matt Szeto and Denise De Lord about their work to form the HLH Network with the aim of improving care for all people with HLH. The team not only won a 2024 BSR Best Practice Award but were also the winners of the much-anticipated Patient Choice Award. So, thank you all for joining us on this podcast, and I'm really excited to hear about the project and how you went about this. But we're going to start with a quick round of get-to-know-you questions. So, I'm going to come to each of you in turn to learn a little bit more about you. So firstly to Alexis, what's your current job role and organisation? 

Alexis Jones: Thanks very much. So I'm a consultant rheumatologist at University College London Hospital. 

Lizzy: And Matt?

Matt Szeto: I'm a consultant in acute medicine and rheumatology. I have been working in Maidstone and Tunbridge Wells NHS Trust since 2019. 

Lizzy: Fantastic. And Denise?

Denise De Lord: And I'm a consultant rheumatologist and general physician at East Kent Hospitals. I'm also Chair of SECARD, which is a South East Complex Autoimmune Rheumatic Disease network, that's a mouthful, and chair of the Kent and Medway HLH MDT. And I've been a consultant in East Kent for 22 years.

Lizzy: Goodness, right. So coming back to Alexis, do you have a specialist interest within rheumatology?

Alexis: Well, funnily enough, my specialist interest is hyperinflammation and HLH. But I also did my MD research and thesis on spondyloarthritis and imaging and I am the postgraduate medical education lead for rheumatology at UCLH. So I have a keen interest in education and training as well. 

Lizzy: Great. Matt?

Matt: I very much identify as a general rheumatologist, but I do run a special interest ultrasound clinic. You'll also not be surprised to hear that I have some interest in hyperinflammation. During my training, I did do a MSc in leadership and management, and I'm currently the clinical lead for the rheumatology department here. 

Lizzy: Goodness, all very busy people. And Denise, how about yourself - any special interest? 

Denise: Yeah, so vasculitis, lupus, connective tissue disease, as you'd imagine, but also ultrasound and inflammatory arthritis so a bit of everything really. 

Lizzy: So a bit of light-hearted banter now. So not “what's your favourite cheese?” but we're a bunch of rheumatologists so “what's your favorite joint?” So, Alexis coming to you first. 

Alexis: I really struggled to answer this, so as a rheumatologist I obviously love all joints. I would probably say my - it's not really a joint - but I do love the spine. I've looked at a lot of spines through my MD thesis and hundreds of MRI scans but I think there is so much pathology and interest and often it can go wrong, but you can also make some pretty amazing diagnoses in the spine. So I'd go with that. 

Lizzy: Great. And Matt? 

Matt: Is this a question about food or the musculoskeletal system? There's this little Japanese restaurant in West London, absolutely amazing. It's about musculoskeletal system. Then it's going to be the knee. It's the knee aspiration injection. It's the first procedure I got taught how to do as an F1, and that was actually how my rheumatology interest started. 

Lizzy: Good stuff. I suspect that's the case for quite a few people. We like knees, don't we? Right, and Denise?

Denise: Well, for me, it's the wrist, I have to say. Very different to the others. Because of ultrasound and, you know, equivocal histories and the amazing findings you get when you scan someone and, wow, look, they've got hyperemia and inflammatory arthritis. So, yeah, that's me. 

Lizzy: Great. So, final, sort of, question for the quickfire round. So, what was the best thing you were taught in training? Alexis, I’ll come to you first.

Alexis: So, this is a difficult one and slightly controversial. I worked with an excellent rheumatologist in my first year of training. And he used to say, “Alexis, patients are often always right in terms of when they explain their symptoms or they think they've got something going on,” and I think it's just a matter of… just really focusing on the patient as a centre of your consultation and always if they're questioning things or thinking or putting you on the spot - they've often caught me out - so the patient's often always right. It's something that I always take home from him. 

Lizzy: Great tip, great tip. And Matt, how about yourself?

Matt: Yeah, one of my mentors told me that the reason why a patient comes to us is for a medical opinion. And an opinion is what it is. We do not always have to be right. The important thing is that we are willing to change our opinion in light of new information or new perspective. And I still keep to that. I tell my registrar that every time. 

Lizzy: Great advice, great advice. And Denise, how about yourself? 

Denise: I think along the similar lines, you know, especially when you've got a complex patient. When I was a medical student or a trainee, to be told to step back, you know, think about the patient as a whole. We talked about multiple systems, but often you have to sit back and listen. 

Lizzy: I think listening is such a key is such a key aspect, isn't it, of being a rheumatologist. So, right, so we're going to learn a little bit more about the HLH network. So what I'm keen to understand first is what the HLH network is and how did it come about? So Alexis, can I come to you for that?

Alexis: Sure. So the network was established a few years ago and largely by my colleagues, Dr Jessica Manson and Rachel Tattersall. Rachel's based in Sheffield and Dr Manson's based here at UCLH. And it really stemmed from the fact that what we were seeing at both Trusts was a group of patients who were coming through acute medicine often, who were having sort of unremitting fevers, diagnostic uncertainty, often very, very sick, going through multiple rounds of investigations, going through multiple rounds of specialist opinions, sometimes deteriorating and going to ITU and having these protracted admissions where really diagnosis was insecure and also going through lots of rounds of antibiotics and eventually, in some of these patients, this diagnosis of HLH was made and it was often made by a rheumatologist with the classic sort of finding on their blood tests and they were subsequently treated with immunosuppression and some of those patients did exceptionally well. 

But actually, when we looked back at their journey, it had been, you know, it'd been so long, it had been so many delays, and it had often been hard to find physicians willing to take them on, to have that ownership of the patient. They sort of fell between the cracks, no one really decided, you know, this is my patient. They didn't clearly have a rheumatological presentation sort of as lupus or Still’s clearly, or they didn't have a haematological cancer or a clear infection, but they sort of fell between all these different types of specialities. And really what both sites wanted to do is try and establish a clear pathway for these patients and a clear team and try and standardise the way in which they were managed and looked after, and really a way of collaborating, getting all the specialists in one room to really think and talk about these patients and work together rather than doing these individual reviews. 

So the network was set up so that the two sites created MDTs and that encompassed haematology, infectious diseases, rheumatology and in some sites neurology and hepatology, and was really set up to establish MDTs in these sites where people could bring these patients with the suspicion of hyperinflammation HLH and have some support and lateral thinking about what the likely trigger was and how we were going to go about treating them. And those MDTs were not just for internal patients but for patients really across other centres, which is where Matt and Denise come in, because actually what we're realising is that we were under-recognising these patients as well. And there were actually many more patients with hyperinflammation HLH, which were deemed sepsis of unknown cause, and really to get people thinking about it, raise awareness. And also, it's incredibly isolating looking after these patients. You can't look after them on your own. We wanted to support the doctors looking after them, not just in our sites, but across other sites as well. So, we encourage people externally to come to our MDTs, which run every week. We now have six a month where anyone can bring patients with a suspicion of HLH or hyperinflammation. So, you get all those specialist inputs thinking about it and also guiding management. And also, we wanted to create a team that would really think about, you know, the sort of evidence-based care pathway for these patients. Often it's very hard to initiate immunosuppression in someone in ITU who's spiking fevers, who looks very unwell, and getting that sort of, you know, collaborative and collective opinion. So that's why we set up the network. And I think ultimately, it was really to improve the experience for patients and try and get them started on treatment earlier and getting the physicians thinking about HLH and hyperinflammation earlier.

Lizzy: So, I think you've given us an awful lot of information there and probably addressed my next question, which was what need did the network seek to address, which was bringing together all those specialties and supporting each other. Is there anything else that you set out to address setting up the network?

Alexis: Yeah, I mean, a patient with HLH essentially is the pyrexia of unknown origin, par excellence, and you need everyone involved to try and think of a differential and it can often mimic lots of different things. So, it was about getting that collective multidisciplinary input rather than someone sitting in a bed having independent specialist reviews, getting all of the people in one room. I think the network also wanted to be involved with sort of training and teaching and raising awareness, creating some enthusiasm around this topic as well, because often physicians, you know, it can be quite scary managing these patients, but just encouraging, sort of, learning and education about it so we wanted to raise awareness and also moving forward use the network as a sort of platform for research. There is so much that we need to know about hyperinflammation you know and and these MDTs serve as a really good way of us learning about the disease but also thinking about questions about what we need to research and what we need to do moving forward.

Lizzy: So coming next to you, Denise, how does the HLA network and pathway work in practice?

Denise: Thank you. I mean, following on from what Alexis said, what she hasn't told you is what she, Jess Manson and Rachel Tattersall and their team did in getting the policy for anakinra approved in 2021. And that was a major thing for us down in Kent. As Chair of SECARD, it was important for me to get policies up and running locally. I will say that I'm sure there are slight differences between how the MDTs work in Sheffield with Rachel and then at UCLH with Alexis and Jess. But I just wanted to illustrate how we set up in Kent. 

And we had an index case, as is often the case, back in November 22. So before then, people had said, what about HLH? When is this going to be set up? And in general, there was really very little knowledge about it. And then some of us found ourselves suddenly on an MDT with Alexis and Jess and the UCLH teams. This was at East Kent. There were two haematologists, me, and our virologists. So, we realized we really needed to set something up because these patients were so ill and without treatment they die rapidly. And we knew that Matt at Maidstone and Bella Waller already had expertise. So they were already treating these patients. They were members of HiHASC, which is the national collaborative. And so we decided to do this as a region, expressions of interest. And so we started with five of us as the core. And Jess and Alexis and team kindly shared their referral pro forma and their guidelines and we set up in February 23. And at first we were feeling our way a little bit. But what was amazing was the unmet need and all the cases out there as people became more aware. 

One thing that we did was get NHS England involved very early. So they were very supportive. And the Trust pharmacists across the three Trusts in Kent and Medway. So there's Medway, MTW and EKHUFT, and it's a big area. It's a population of 2 million, so we are quite busy, actually. And similarly, we have two MDTs a week and we submit returns to NHS England. 

But it has been quite inspirational, I think, just seeing these patients improve. And so we always meet within one working day because we realise you've got to get to them quickly. So since February 23 - we've just had a look at our figures - we've seen about… we had 26 cases referred now and two-thirds of those had HLH and our mortality is about 50 percent. But actually most of these were malignancies and haematological malignancies so the mortality would have been about 80 percent so they were really pleased with that.

And just to talk about the process, the way it works is people across the region send a form in to our MDT coordinator - we have a generic email. He then sends out the invite for the following day and people do this, you know it's managed within existing resources, so they do this in their own time and we've had people dialling from car parks you know on their way to other meetings, from home… so there's been a great deal of commitment and it is now working very well 

Lizzy: So I was keen to sort of understand how you involve the MDT and patients in the project.

Denise: Yeah, I mean, the MDT now, we started with a core of five or six of us and it's expanded quite significantly. This means that we've reduced the referrals to UCLH, but we still do discuss complex cases when necessary. I think with patients I'd like to pass this back to Alexis if that's all right because she and her team have done some excellent work with their specialist nurse. 

Alexis: Yeah so we've got a PPI group that's run by one of our nurses, Rob Wilson, and it's across sites, Sheffield and UCLH. And, you know, there's been a lot of work looking at patient experiences of HLH. And I think that the two things really that we've learnt is that it's the patient journey of how long it has taken them to have this diagnosis. And through that process, the number of investigations, often quite invasive procedures that they've had, and not knowing what is wrong with them and it being such a traumatic thing that they've gone through. And the, sort of, also being told, you know, you've got HLH, which at the moment has runs a, sort of, mortality of about 50% and having to come to terms with that and subsequently their follow-up. So we've done a lot of work with our patients to find out their experiences and I think part of the network is about improving the recognition of this condition and therefore improving the rate in which we can diagnose it and treat it and sort of preventing patients from going through that protracted journey. And that's, you know, in part what the network is about and trying to give that facility for people to bring these patients and get a sort of definitive opinion quickly and some recommendations about treatment. The network and the MDT is such a big group. And actually in the last year or so, we've actually had a psychologist who's also been helpful with our patients. And that's been feedback from the patients themselves saying, you know, it was such a horrible experience having had HLH and going through ITU. And, you know, from the feedback from them, we've actually just had a business case for a psychologist to be involved. And that's been really, really helpful.

Lizzy: Yes, you can really see how that patient involvement has steered you in a different direction, which we might not have maybe put the emphasis on, I suspect. That's great. So, I'm keen to understand the impact the project's had on your service, on patients and on the team. So, I'm going to bring Matt into the discussion at this point. So, Matt, what impact has the project had for your service patients and team? 

Matt: So, at the most fundamental level, speaking from the Maidstone and Tunbridge Wells experience, we are delivering a much better service for patients who suffer from HLH. We have half the time that it takes from admission to starting definitive treatment for HLH. Since establishing our local MDT, our patient survival rate has improved from 25% to 55% over the last couple of years. And all this are… you know, while the MDT is an important vehicle for that, what comes around is the ability to build very collaborative relationships with other specialty colleagues. Bone marrow aspirate, our infectious disease and microbiologists are much more on board in considering HLH as a differential diagnosis for patients who do not respond to antibiotics. And our biochemistry laboratory staff have worked with us to develop a regional flagging system for patients with high ferritins in their blood tests. So, while the MDT itself is the main vehicle, there's a lot of collateral benefits that have come from engaging in HLH work and working with other colleagues. And personally, it is a hugely rewarding piece of work. As Denise has mentioned, you see very unwell patients getting better and you learn so much, like through the MDT I have learned so much from my colleagues and that makes the job a lot more rewarding.

Lizzy: Denise any further thoughts from yourself? 

Denise: I mean, I think it's very much as Matt said, it has really transformed the way we work. I mean, there comes an uncertainty with your working day as well, because you're not sure, and I'm sure Alexis you have this twofold to what we have, but you know, you don't know when that referral is going to come in. How are you going to talk about it? But somehow we always do. And it's just, it's so different working with other colleagues because haematologists have a different viewpoint that, you know, the infectious diseases people look at the history from that point of view. So, it has been a really worthwhile journey. And suddenly all these cases are popping up and it's a bit like a ripple effect because within microbiology, everybody's getting involved… haematology… We've had more and more people now thinking about HLH, certainly in East Kent. Before November 22 I don't think I'd seen a case or knowingly, but since we started the MDT, I can now think back to all those patients, you know, I hate to say, that had PUOs and hepatosplenomegaly and nobody really knew, and the haematologists didn't want to do a bone marrow because they couldn't see any indication. So, we're getting bone marrows very quickly now in most cases. And the collaborating across the three Trusts - mainly the two Trusts at the moment - has really made us work well as a region, and I think that is just so beneficial in terms of research, which we hope to set up as well.

Lizzy: Alexis, any further thoughts from you on that question?

Alexis: No, I mean, it's just echoing exactly what Denise and Matt have talked about. I think it's, you know, it's putting the patient at the centre as well of all of this and being able to make, you know, decisions quickly on very unwell patients and very complex patients is often really difficult to do. But this is something that really facilitates that and allows that to happen. And it is also… these networks are also about doctors helping doctors. You know, we want to support each other, we want to give each other the confidence to start, you know, some quite punchy treatment in a very unwell patient, and that support, you know, the feedback that we've had from other centres has been great with regards to that.

Lizzy: Loads and loads of positives there to take away.  So Matt, what are the next steps for the project?

Matt: So, I think from a clinical perspective, what we want to do as a network is to empower more people to recognise and manage patients with HLH, and that's across the country. So, educationally, we're doing some work with other specialties. So, some of us are going to be speaking in the Society for Acute Medicine conference this autumn to spread the message of HLH across to our front door colleagues. We have also worked with colleagues with expertise in simulations to create some HLH-related scenarios that can be used in general medicine and acute medicine training days. I’m hoping that other colleagues in the front door will consider HLH early and to initiate management. The HLH Network has also worked with GIRFT, Getting It Right First Time, to publish a pathway for investigations and management of HLH. And this piece of work is a great piece of work, really, as I would say, because I'm a bit biased as one of the contributors, but it has received contributions from clinicians working in many different clinical settings and specialties. It is very pragmatic and useful, as in all the first-line investigations recommended are something that you will have access to in all secondary care facilities within this country. There isn't a test that is so specialised that you cannot perform within your setting. So, we hope that with that pathway, we can support colleagues across the country in managing HLH, and that you don't have to be in an all-singing, all-dancing tertiary centre to manage HLH. So going forward, we are really hoping to see that expertise spreading across the country, and hopefully one day, no matter which region of the United Kingdom you are in, you will have access to your own local regional MDT.

Lizzy: And how can other individuals and teams get involved?

Matt: So as Denise and Alexis have mentioned a few times, HLH is not actually that rare once you start recognising it. Once you start seeing it, it comes along not so irregularly. So it's about creating more regional MDTs to provide a prompt, effective, and safe service to their local populations. While the principle of GIRFT is very much about standardisations, within this pathway we have also recognised that you often need horses for courses, as in the operations and the governance of each MDT may be slightly different, and that's okay. And to illustrate that, our pathway has included four different case studies, and you'll see that in all four case studies, the operations of the MDTs are slightly different, and they all work well within their own settings. So, while there's standardisations and establishing best practices, there's also the idea that there is some flexibility in terms of creating a MDT that is workable within your own setting. So, I think the message that we're trying to spread is that the important thing is to give it a go. If you recognize that HLH is important, and hopefully by the end of this podcast you will recognise that, then give it a go. You will very soon find enough like-minded individuals who are willing to collaborate with you. And this can be one of the most fulfilling and interesting things in your medical career.

Lizzy: Really, really good advice. Alexis, are you going to come in with…?

Alexis: Yeah, I was just going to say also, I think if you're listening to this and you have an interest in HLH and you think, actually, I can, you know, I want to do this in my Trust, there are two useful sources of information. So there's HiHASC, which is a cross speciality group, which is run by Rachel Tattersall and Jessica Manson. They do regular educational seminars which you can join. It's free to join also as a way of getting more information about HLH. So if you go onto their website and you can join the group and come to some of the seminars. And then really just joining, you can join any of the MDTs, either Sheffield or UCLH, to get sort of an idea if you're interested in HLH. And then I think, as Matt said, it's just about in your local site, starting to find like-minded people and setting up that small MDT, which what we've seen is it growing, and then people get more and more interested and then it sort of it takes of. So that would be my recommendation. Certainly, we're getting so many referrals now across the UK and it would be really great to see more centres forming their own MDTs and in their own regions to help manage these complex patients. 

Lizzy: Well I'm hoping you'll have enthused people listening today so thank you for sharing your experiences. So, I'm keen to hear from each of you as to how you feel BSR could support you to increase the impact of your work. So, Denise, coming to you first. 

Denise: Thank you. I mean, for me, I see it as a part of rheumatology and my job. I know it's different for other rheumatologists, but it would help if BSR could somehow rubber stamp in recognising the role that we play in managing HLH. For example, with job planning, liaising with the College, allocated PAs or a clinical activity. And then the other point I was going to make was just picking up from the amazing work that Matt and his colleagues are doing with the acute medicine conference, could there not be something similar within the BSR so that there were modules on HLH? Because I think people are very scared, you know, the word HLH and people throw their hands up and run away. But actually, when you work through it, you've got you know the H score and algorithms and so on… it's not difficult so I wonder if there's an educational aspect that you could help us with. 

Lizzy: Great suggestions. And Alexis, how about yourself? How could BSR support you?

Alexis: I mean it's probably just worth saying we're really grateful to BSR already. I feel like you have supported us in recognising our work in terms of the award. And that's actually been huge for us because it's also given something we can feed back to our own sites. And it's a recognition and it is a rubber stamp that this does come under rheumatology, so we're really grateful for that. I think one of the things we've learned about managing these patients is this seeking out like-minded people, collaborating, that is essential to forming these networks. So using BSR as a platform for networking, creating collaborations, whether that's through educational forums or certain talks or seminars, I'm not too sure how, but you've got a whole pool of rheumatologists across the country being able to spread the word about HLH and also finding other people who are like, “oh, I'm interested in this, you need to connect with such and such,” or “this is how we did this, or maybe you should try that,” having that big network and that ability to discuss and collaborate… using BSR as a platform for that. But I also do agree with Denise, using BSR for education and, you know, tutorials about recognizing HLH hyperinflammation, when to use anakinra, what is anakinra, when to stop it, when do you use it…  those kind of things that we could use BSR for education as well.

Lizzy: And Matt, anything further to add from yourself?

Matt: I mean, I'll just echo the point that's been made by my colleagues here. I think BSR is going to be an excellent platform in collaboration, both within the rheumatology world and also with other specialties. BSR has already done a lot for HLH. They have contributed to the GIRFT pathway, BSR has recognized our effort with the Best Practice Award. And I'm hoping going forward by having the recognition of BSR, we can get HLH, which is currently still seen as a bit of a niche thing - it's done by a few rheumatologists who are out there - but I'm hoping that going forward with the recognitions of BSR, that we can bring HLH to the mainstream, both within rheumatology and across the whole of medicine. 

Another thing that will be really helpful for BSR to get involved with is that we are currently in the process of developing a research program nationally for HLH. So we're hoping to create a biobank for patients who suffer from HLH. And the dream is that going forward, we might be able to launch into some intervention trials to improve and optimise the treatment for HLH. So when we do get those underway, it will be brilliant to have some promotion material from BSR.

Lizzy: Really, really helpful thoughts from all of you. So wrapping up, last question to each of you. So what one bit of advice would you give to anyone starting out on an improvement project like this? So coming to you, Denise, first.

Denise: Well, we've heard this word quite a lot during this podcast but to feel empowered, I would say, and also don't forget to get the support of stakeholders like BSR and NHS England. Get them on board early.

Lizzy: Great tip, great tip. Alexis, how about yourself? 

Alexis: It’s a similar vein - I think it’s ‘be bold and just be an asker’. Just ask anyone for any help. Get as much help and support you can. Dr Manson isn't here today, but she's particularly good at getting people involved and learning from other people. And just don't be shy. I think if you've got an idea, just go for it and get as much help as you can. And there's lots of resources out there to help you and you will be surprised probably about the number of people also in the Trust… it just takes one person to potentially to have that initiative, and then other people will follow and help you out so just don't be shy and find your friends.

Lizzy: Great advice. And Matt, how about yourself?

Matt: Yeah I mean, as we all say, just have a go at it. The worst you can do is to have to try again a few times. Eventually you will succeed. There's a lot of resources out there for QI, both within BSR platforms and across the wider NHS resources. So fairly simple models like the model for improvement often serve as really good baseline questions for you to set out on your project. So yeah, make use of those resources and people around you.

Alexis: And I think just one more thing, just coming back in, is you don't have to reinvent the wheel. Often these projects and innovative things have been done in a different way, but you can learn a lot from people who've gone through this process and get tips about how to make it more efficient or less painful. So it's always worth just finding out who's managed to get these things running and off the ground and get some advice from them. 

Lizzy: That’s a great final tip. I often use the phrase, “I'm stealing with pride,” and acknowledge people and say, “thank you,” because let's not waste time reinventing wheels. You're doing some great work. And I'm sure you've all today expressed how much you would support people getting in touch with the networks that are already in existence so that we don't have to all go through those same, sometimes felt very longwinded, processes to get things set up. 

So thank you to you all for joining the podcast today. It's been really enthusing. I'm going to go away and have a think about how we could do things locally. So you've enthused one rheumatologist here and we've got some great networks locally, but not with a specific focus for HLH. So it'd be great to have a see. So thank you all for sharing. Thanks for your top tips, and we look forward to another Innovators podcast episode on Talking Rheumatology next month. Thank you.

Voiceover: Thank you for listening to Talking Rheumatology, brought to you by BSR. Please do rate, share and subscribe through your favourite podcast app.