Beyond the Clinic: How Patient Organisations Support Care

Do you ever find you’re asked questions by patients that you don’t know the answer to? Have you wondered what patient organisations can do support people with rheumatic diseases?

 In this next episode of the Patient Voices series, join our host Dr Vanessa Quick, consultant rheumatologist and trustee of PMRGCAuk, as she talks with Sue Farrington, CEO of SRUK, & Kate Middleton, founder of the Wren project. 

Their discussion covers the varying roles of the patient organisation from the grass roots level of patient support groups and sharing lived experience through member forums to providing a voice at national level lobbying for improved care for people with rheumatic disease. The importance of their role shines through the conversation. 

Useful resources:

The Wren Project

SRUK

PMRGCAuk

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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

Welcome to this Talking Rheumatology podcast. This episode is part of our Patient Voices series, where we discuss key topics with experts and patients together. And this episode is focused on how patient organisations play a vital role in supporting patient care. I'm Vanessa Quick, I'm a rheumatologist from Bedfordshire Hospitals, and I'm also a trustee of the national charity PMRGCA UK and your host for this episode. So I think it's really important to start by acknowledging that diagnosis is only the start of a patient's journey, and many of the patient's needs fall outside traditional clinical care. Healthcare systems are primarily designed to diagnose, treat, and monitor disease, but patients often require far broader support, and this may include a whole range of things from navigating employment, financial pressures, accessing benefits or workplace adjustments, managing those harder to treat symptoms like fatigue and dealing with day to day function. And they also have to cope with things like uncertainty and addressing the psychological impact of chronic disease and patients and also their families may also need education and peer reassurance. Many of our diseases are quite rare, and patients may never even have heard of the condition, and certainly not know anyone with the condition. Peer support can be very powerful, and they need help interpreting medical information in that real world context. And we don't always have time to do that in our time limited clinic appointments. And that's where patient organisations can really bridge that gap. And therefore, I'm really delighted to be joined today by Sue Farrington and Kate Middleton. Sue is chief executive of Scleroderma and Raynards UK SRUK and also president of the Pan European Scleroderma Patient Network. And if that's not enough, she's also chair of RAIDA, an alliance of charities focused on rare autoimmune rheumatic diseases. And we also have Kate, who is founder of the Wren project, which provides listening support for people living with autoimmune diseases. Welcome to both of you. Um, can I start by asking you a very broad question? Uh, what were your motivations for having this role or career? Sue, would you like to start?  

Yeah, I think there was one really clear driver for me. When I saw this role advertised, the chief exec at SRUK, I thought, this has got my name on it. And I thought that because my sister had, at the time, systemic sclerosis. So I saw firsthand how she had to deal with the disease. And in the early days, very much the challenge that she had around trying to find good information and not just information about the condition, but living with the condition. So that was my initial driver and remains my kind of motivation and passion to this day.  

Thank you, Sue and Kate? 

A similar personal story. I was diagnosed with lupus when I was 17, and I've been diagnosed with quite a few more autoimmune diseases in the twenty years I've lived with it. My physical care has been outstanding, and I think I'm blessed to live in the UK and have the NHS because it saved my life on many occasions, I wish along my journey I'd been offered or had more access to mental health support. I've really noticed the dips in my health, accompanied by the dips in my mental health and the interaction between the two. And five years ago I sort of thought, I wonder if other people in this community feel the same as I do. And that was the big motivation. I started asking people. I realized how similar my personal experience was with the 6.9 million people with autoimmune diseases and how much of a need there was for a real focus on mental health support, alongside people living and battling autoimmune disease.  

Thank you both. Sue what do you think the sort of the overarching aims of patient organisations are from your perspective?  

I think it's interesting. I think some of the larger patient organisations have a multiplicity of roles, which I think is sometimes really challenging. We need to make sure, particularly for rare diseases, that we increase awareness because they're rare. Little is known and both our communities have said for the public and for professionals, because one of the things that you mentioned is getting a diagnosis and getting that early diagnosis, which can be a real challenge through lack of awareness and understanding because they're rare. So raising awareness, I think, is really important. I think working with our community to make sure that they've got the information, support and guidance they need. I think that's a really important strand. But I also think where there's capacity advocating for good treatment, making sure that there's equitable access to the best treatment and care, but also finding out from the community where the unmet needs and challenges are so that we can look at those and present cases for change in the system. And then the final thing I think is around research. We are small, so the amounts of money we're able to put in ourselves are relatively limited. But there's a lot of work that we can do working to make sure that patient voice is integral to work. The industry is doing research institutions, because having that patient perspective I think is vital. So I think for me, there are kind of four key pillars awareness, empowerment, improving healthcare, and then really looking at what we can do to make sure we drive forward research and, and kind of go from bench to bedside, making sure that we accelerate the progress of those treatments to market and to people with the conditions.  

Thank you Sue. And do you have a slightly different perspective, Kate, or additional thoughts about that question?  

Yes. I think what Sue said is absolutely on point. And I think that we do well, patient organisations do well in those spaces. I think that they're essential. When the WREN project was founded, we saw that, as I say, the NHS and the service provided for patients was wonderful alongside patient organisations that really focused on advocacy and information and getting the right information to patients and being sort of the bridge between those two. And as I say, I think that there was a bit of a gap in terms of the mental health provision, which is what the project really focuses on, and it works with patient organisations who are our biggest referrers. So people often come to patient organisations and use helplines, which are essential. And I have used them myself many times and if helplines are getting repeat callers that are evidently looking for someone to talk to and support them in the distress of living with their disease, that's a really good opportunity for a patient organisation helpline to refer to the project and as I say, that's our biggest referral pathway. It's also a huge referral pathway in the NHS, because clinicians can see the value also of someone just to be able to listen and talk to you through your journey of an autoimmune disease will make you feel better or less lonely. And I think that's an essential part of someone's journey as well. So overarching aim of the projects is to complement the services that already exist and to be the real mental health support that's ongoing. That's six months up to a year for patients that need that ongoing, consistent, long, longer term support  

And I think that what Kate raised there is so important because patient organisations can't do everything. And if we try and do everything, something is going to give way. So we know from our community that this sense of isolation and loneliness and not being able to talk, maybe talking to your family, but they reach a point where they can't help anymore. So I think the, the kind of service that Kate's provided, I think is really welcome because it really adds value and gives people that space where they can talk to others, but also be kind of guided and facilitated and supported through that conversation. So I think having this service is really fantastic.  

Absolutely, absolutely and I think different patients will want to access services in different ways and have different needs. Certainly at PMRGCAUK, we have a one to one helpline manned by patients with lived experience. It's not there for advice, medical advice, it's there for support but we also run support groups. We have an online forum. We have lots of different ways that people can access support that's right for them. And that's the joy of certainly PMRGCAUK and other societies that variety of help. Super. Let's try and drill down now a little bit more detail. I've begun to talk about it already, but what can the patient organisation do for the individual patient, Sue perhaps you can start? 

So I think one of the ways and I certainly know is what we can do in terms of looking at you as an individual and making sure that it's more personalised. As you've mentioned, there's the helpline. So people can come with very specific queries or questions, and we're able to kind of give that more personalised support. You access a website, you see general information, but it's about, I think, then being able to tailor it to the individual. One of the things that we've just done recently is also to add a healthcare specialist who is a former rheumatology nurse to our staff, because we found that post-COVID we were getting far more calls to our helpline, and those calls were of an increasingly complex nature. So we found that adding this service in has really created value for our patients. We're able to do things like provide letters of support, where people are struggling with things like access to benefits with workplace adjustments, getting a referral. Um, so we've been able to write, you know, in the last year, over 300 letters of support that have helped shift the access point for the patient. I think we have seen there's a real problem with personal independence payments, and that's understandable because the assessors won't know about the rare conditions. So we, I think, have a role to play broadly educating, but also seeing where there is a problem with an individual to write that letter of support. And we're finding that we've had some really positive feedback about how people have now been able to kind of get the support and the benefits that they need. But the other thing I think is about connecting people, and Kate flagged that up about bringing people together where they feel safe so that they can talk about their condition. And ten years ago, we brought people together, kind of a geographic basis. But what we're also now moving towards is creating very bespoke groups, so bringing a group of men together, younger people, parents who've got children affected by the condition. So that's one of the things that we're doing and I think online helps facilitate that. We have a mixture. We have face to face groups, but also I think online has helped increase our reach, but also the diversity of the support that we're able to offer.  

Fantastic, fantastic. And Kate, what do you think WREN can do for the individual patient you've already touched on many aspects, but can you expand on that?  

Yeah, I'm building on what Sue and yourself have said. I think that it is about individual support. It's working with the individuals for their specific needs. And I think WREN is excellent in that way. Um, patients that come to us and Sue mentioned their loneliness, the distress, the how scared people are is immense. And I feel it myself. Sometimes I go to a hospital appointments and I hear so much information so quickly and my mum sitting next to me feels so overwhelmed and I come out and feel shell shocked and I think, how am I going to process any of this? And there are specific questions like what is methotrexate? What is belimumab? And it is wonderful that lots of patient organisations exist that I can call up and talk to about that, or I can talk to nurse helplines at the hospital I'm with. But the thing that the project does, in addition to all of that, which I think is so essential for people's mental health, is to come and say, I feel overwhelmed by all of this. I just need to talk it through. I don't want you to tell me what to do. I don't want you to be another piece of advice that I have to follow or listen to. I don't want more information. I've got enough. I just need to talk through the information I've already got. And I want to do that for six months because over a long period of time, you can really start processing words and auto immune disease is not quick. It's the irritating thing where people around you ask constantly, are you better yet? And the answer is no, I'm not and I would quite like to have kind of longer provision of support where I can really digest what is happening and finally respond to it in the way that I want to. So I think the wonderful thing that the WREN project does, and hopefully I lead this, is people can respond in any way they want. We have lots of people at WREN project and say, this is very sad, but it's made me who I am. There's some people that come to the WREN project and say, I am bitter and angry and I just want to scream. And some people that come to the WREN project and have a very different reaction, and every reaction is right. And the thing that we do is just listen to it and we're alongside you. and we will turn up again and again. And I think that having someone with you on that journey, that's not another voice to battle with or to think through, but just to be alongside you is so essential.  

As I hear Kate speak, I'm just thinking to myself also about carers family, because I'm wondering whether there needs to be a space for them as well. Because thinking about how do I support my loved one? How do I do it in a way that doesn't feel like overkill or smothering and a space, I think, for carers to come together? So maybe that's an added stream for you to be able to provide kind of safe space for carers to share, because they must carry a lot as well and have frustrations about sometimes not knowing how to approach the support that's needed.  

Absolutely. And I think your idea, Sue, about getting specific groups together like men or younger patients or older patients within a disease spectrum. Carers within that is another really important group. And talking to other people who have a relative with a disease that you've also never heard of is really important. I agree it's wished we get a lot of. I've just become a mother of two and I thought living with autoimmune disease was complex enough, but living with autoimmune diseases. It adds in a whole new layer, we get a lot of parents calling up saying, can I have the support that you offer? It's a dream to be able to do that, and one day we will do it. But slowly and surely, what can the patient organisation do? How can they support us in our care for patients with rheumatic diseases? I think what I would say is it's very much about us working together, but the critical thing is that we can only support your patients if they know we exist. And so my plea would be for healthcare professionals, rheumatologists, nurses to be able to refer to the relevant patient organizations. And there are a lot of condition specific charities in this space, but also obviously the services that Kate is offering. But without that kind of visibility and profile, we sometimes can't be as effective at working together as we'd like to be. Absolutely. And I certainly in my practice in clinic at that point of diagnosis, regardless of the diagnosis, I will always show the patient the web page for the relevant organization for them. And sometimes I diagnose or I'm involved in the care of something that I've an illness I've not looked after before. And we look up together to see if there is an organization and there usually is. And certainly my interest is GCA and PMR. So many of my new patients have those conditions, and I will always show them the web page. Show them the helpline number. Um, I've got the magazine that I can show them in clinic. And we also have lots of leaflets outside and many rheumatology services do that too. For example, the Arthritis UK leaflets are commonly used and on the back of those leaflets are almost always the contact for the relevant patient society, so it only takes a few seconds to signpost. And then if someone wants to access their services, they will go away and do that. And then I will also come back later if someone appears to be struggling with certain issues. I'll say, are you a member? Would you consider calling in the fantastic support if you want to? And there is a local support group if you fancied going there, because often at diagnosis, as you say, Kate, there's so much to process. It's so overwhelming. Some people immediately want to ring the helpline and access the information and other people, it might be something they do weeks, months, even years down the line. And there's no, as you say, no right or wrong answer. And just sort of having that in the back of your mind as part of your toolkit of important things to share with your patient to support them. I think patient organisations are an essential part of what we do because we can't do everything in clinic. It's just impossible to support everything you just said. My personal story of this I was diagnosed when I was seventeen. I remember the clinician saying you should go to Lupus UK for support, but I was so overwhelmed by the diagnosis of lupus that for the first ten years, probably of living with it. I would be furious if anyone even said the word lupus anywhere near me. And I didn't call it that. I created this body that I hated and I didn't want to think about. I didn't want to speak about it. So the idea of calling up Lupus UK is just mad. I remember my grandma did on my behalf. I was so furious with her and then ten years later, something changed and suddenly it became quite an important part of my life. And I think remembering that the story of someone with an autoimmune disease, which they will have for life, can really change over the years and will develop as a person that you are over the years,  the WREN project is it's so important for people. We say, come to us when you need us in a period of distress, and come back when you feel distressed in the future and that is dictated by you, no one else. And 80 percent of our referrals are self-referrals, It shows that this community is looking for support when the time is right for themselves and when they need it, they will come and access it.  

I completely agree, Sue. The more we talk about our services, the stronger we will be as a community, the better the support for the patient. But remembering that It could be at any point, we have quite a few referrals that are over the age of 80, which we never thought we would get. We thought we would be a service for for young people, but we are open for all ages and all ages access our support, which demonstrates to us how much the journey can change with an autoimmune disease. What you say just reminds me of my sister. My sister didn't want to have anything to do with the patient organization. She said, I'm not being defined by my condition. I'm going to kind of do my own research. I'm going to do my own thing. And a bit like you kind of like ten years into her disease, it sort of shifted. And I think that was maybe when she became more aware of the services and support that were offered. Maybe having the opportunity to talk to people in a similar position to herself, you know, wanting to find out more about clinical trials. And for me, the thing about signposting and getting a rheumatologist or a healthcare professional to signpost is exactly as you say, Kate. It's to let people know that we exist and that they will then come to us, as you say, when the time is right.  

Really important. Fantastic. And can you give any examples of practice done well with support through local support groups or helplines, just to flesh out what we've been talking about? Sue perhaps can you think of any specific situations? 

I think one of the things when we first created SRUK, we involved the community in helping us understand what we needed to achieve as an organisation. And there were several outcomes that were articulated, and one of those was about reducing the stigma, reducing the sense of isolation and loneliness. And these outcomes we measure are kind of like on a three year cycle. And I think the fact that we've seen people report that their sense of loneliness and isolation has reduced. So I think I would share that back. It's not as specific, but it's more of a kind of global feedback from our community that what we're doing is helping to reduce that sense of isolation.  

Yeah. And I think certainly within PMRGCAUK, we talked a lot about the psychological support, which is so important. But I think certainly my patients also find a great deal of support talking to other patients about treatment options available. As within these two illnesses, there is a lot of discussion around what's the best treatment course for patients. They get a lot of differing opinions from their healthcare professional, from support groups more widely and for example, online or on Facebook. And I think that we as an organization, our role is to kind of make sense of the differences of information that are out there in a more robust way.  

I think that's something we've also talked about before, Sue about our role being there to provide understandable, but measured and sensible real world advice in a confusing world with lots of different information coming at you. Is that something that you recognize?  

Absolutely. And the growing kind of trend of mis and disinformation through all the proliferation of social media channels is really alarming. And then you add into the mix AI summaries in the healthcare space, some of which are not correct, they're not accurate and in some cases dangerously misleading. That is why I think patient organisations have got such an important role to play and making sure that people get access to that information and knowing that it is credible, that it's evidence based, it's accurate. And many of the organizations have a medical subcommittee where we then can go and check our content to make sure that it is accurate. And there's also the thing called the tick, which is delivered by an organization called the Patient Information Forum and they have set up an alternative to the NHS Information Standard, which doesn't exist anymore. So it is a way that if a patient sees that quality standard mark, they can and clinicians to some extent can be reassured that where people are being signposted to actually the information that they'll be accessing is of the highest quality. I think one of the things that we have in the social media space. It's making sure that we moderate and that's pretty time consuming because patients, yes, can share their experiences. But when you've got conditions that affect people in a kind of variety of different ways, everybody's experience is unique of these rare autoimmune conditions. So we've got to be really careful that in trying to be helpful, these individuals are not misleading. So I think we've got to be very vigilant in that kind of social media space. Absolutely. And, and certainly, um, within PMRGCAUK, all of the materials that we provide are reviewed and assessed by a panel of clinicians, allied healthcare professionals, specialist nurses, and also expert patients so that the, the language and vocabulary are accessible. Um, and also medically correct. And that's true not just within our own group, but we also provide advice to other organisations. For example, we were advised regarding the Arthritis UK leaflet, so you can know when you pick up those leaflets that panels of specialist individuals have been involved in their development, which I think is really key and important.  

And can I add in sitting here, it's interesting hearing you both, because it makes me think about how unique WREN is in this picture. Um, so I often have a, um, I'm a volunteer at the WREN project. All of our staff are as well and when I'm supporting people that come to us for that six months, sometimes on the calls, people ask me my advice, advice, and sometimes I might know the answer because I've lived with this disease for 20 years but the thing we are so rigorous on and train our volunteers again and again and again is you do not have an opinion and you do not give advice, because there are other organisations that you have been talking about that do that and do it properly. We don't do that. That's not our space. So to give you a really good example, the group support, if in the group support that we offer, people start talking about how can I access advice? Or could you give me advice or information? The answer of the WREN project is go to those organisations that do that. But here talk to us about maybe the things that you won't get from elsewhere. So a really fascinating conversation that recently came up on steroids. I've been on them for twenty years. And sometimes I really think about how much have they changed my personality? And it was such a fascinating conversation to have as so enriching and so validating for me as a patient, to hear six people in that call talk about anger management around steroids and if you think where else in the world, where, what other space would I be able to have an hour to talk or an hour and a half to talk to six other patients who have been on lifelong steroids about how much has changed my personality, how angry I feel, how sad I feel, and real devotion to the emotions accompanying autoimmune disease. It's a it's a powerful moment for you as a patient to feel less lonely and to know if you want medical advice about taking steroids, go to those organizations that provide it. So in a perfect way, I think we complement you and you complement us. Uh, and it's, and that is the most powerful way to change people's lives, living with autoimmune disease. Yeah. Because otherwise people hold on to that sense of a false sense of themselves. Maybe. But by having those conversations, they can sense it's not just me. And that is so powerful, I think, for people to realize, oh, it's not just me who feels this way. And actually, there's somebody else out there who feels the same way, and they've managed it in this way or that space to have those really open, honest conversations, which they're not going to get anywhere else. And I think in that space, more powerful than kind of like on social media, where a lot of this does play out, but it's not very helpful. It's very bite sized and yeah, no, I think it is very complimentary.  

And perhaps now we should sort of think more broadly about some of the things we've touched on in, in terms of research and lobbying for better services or treatments that. Sue you very briefly touched on what is your experience of that within the charities that you've been involved in?  

So I think in the rare disease space, when I first joined ten years ago and spoke to colleagues in other rare autoimmune disease organisations, we realized that the population size is relatively small and for the system change that we want to happen. Going as a small group is not going to have the impact. And very quickly, we recognised that we would be way more powerful if we came together and I'll particularly talk about the rare autoimmune rheumatic space because of the commonalities. Yes, they're very different, but there's some commonalities and those commonalities are around slow time to diagnosis, poor coordination of care, inequitable access to treatment and care based on your geography and we realize that if we came together, um, and started to knock on the door of policy and decision makers, there would be more chance of those doors opening to listen to us and in actual fact, that has been the case, but it has taken time, you know, to shift and to get those relationships going does take time. I think the other thing that's really important to complement that is evidence and data and insight. This is where the population, our patient population is really powerful, understanding their challenges, their unmet needs in their words, but also having the data to support it has been hugely powerful in the reports that we've created and has helped us make the case for change within the system, making that case and then seeing the change is also then a slow uphill battle. I think one of the things that kind of differentiates RAIDA is also it's not just patient organisations. We work alongside clinicians, so we work together. For me, you have to have all the stakeholders around the table to really understand where the challenges are. So I think one of the achievements I'd like to cite is the fact that we have just successfully worked with NHS and NICE to develop a quality standard for rare diseases. Now we've gone up a level for rare rheumatic to rare because I think at the time that was where nice had the capacity. They couldn't take all the individual rare diseases. But what that quality standard does, as you well know, is to set out what does good look like in terms of the diagnostic journey, coordination of care, access to treatment. So that was published by NICE on Rare Disease Day this year and that's been two years in the making but working with a multi-stakeholder group that has been led by RAIDA and I say that and it's kind of like you achieve this. And then it's like, okay, now this is just the beginning of something. Now we've got to get it implemented. So my big plea is to kind of share the quality standard and make sure that people know about it and make sure that patients know about it so that they can also advocate for themselves. But coming together collectively, I think is the best thing that we've done.  

Absolutely fantastic work. And I think I can give a good example on, on, on, even on a more local level of people coming together and feeling empowered. And that was some work that we did at PMRGCA UK quite recently. Um, NICE are looking at Upadacitinib, a JAK inhibitor that has proven efficacy in GCA that's been licensed but has not yet been approved and it was clear that NICE, through their initial assessment, were not able to fully understand the impact of steroids on our population of patients and so we had two weeks and the charity, uh, pulled out all the plugs. We did webcasts, we produced written material to help people understand what we needed from them, which was for them to communicate the impact of steroids on their life to NHS England and to NICE and they were amazing. There was a real sense of community and a passion behind people hearing that everyone else was also struggling. So it was a wonderful group experience, but also a sort of channelling for that, perhaps that frustration to help NICE understand their disease better and I'm very hopeful that that's going to be an important contribution to NICE's understanding of this problem. So I think that's why I think charities are so fabulous because we have so many different facets or aspects to us that are good for the disease and good for research, but also good for the person involved within that to feel part of a community in many different ways. So yeah, I really love that aspect of, of our work at the charity. And I think also if charities can be a focus for research, which you've touched on as well. So they, they will know about research projects going on and a national and local level and can provide information to patients. We've got a national study going on in PMR and through the charity, people have become aware of it and looked for local options to join that research project. I was going to say, I think we can also influence the research that's taking place. One of the things that we found when we developed our research strategy was quality of life was really important for patients and to help us move beyond or take this treatment, which is where our system is at, you know, take this drug and that's your kind of treatment pathway. And to start looking at it more holistically, which is some of the work that Kate picked up on the psychological support, but identifying that quality of life, you know, access to exercise, understanding the role nutrition plays and guiding and funding research and making it clear that that's what is of importance to patients. So I think we can steer the direction of some of the research that takes place. And, you know, I think we look at the work that Dr Melanie Sloan is involved in, which both Kate and I are contributing to, which is looking at the impact that both physical and mental wellbeing interventions can have on a patient, because then we will develop the evidence base that we need to potentially get that funded by the system. If they can see that it's efficacious alongside therapies.  

Absolutely. Because if there's no evidence, then it's much more challenging to get things funded. Absolutely. It's I think it's really interesting. I think at the project also, it's interesting that we value so much the personal experience and people come to us and they can choose one to one or group support and it is about their experience, their journey with autoimmune disease, which is the heart of us. But what Sue said, you know, together we're stronger and there's we welcome all autoimmune disease into our service. And there are 6.9 million people in the UK with these diseases. We're still small. We've only had 2000 people through our service. But in by 2030, we're hoping to make that 15000. And if we just think about the power of that data for a second, that's 15000 people that will come to us with all autoimmune diseases, and we'll share with us if they want to. And if they've said that, that's okay. They'll share with us their demographics, which is powerful data and they'll also stay with us for 6 months and during those 6 months, we make very brief notes on the key areas that people have talked about and if you look at that data collectively and anonymously, using the bits that we can use, the evidence that we're creating is immense. So already we're seeing huge patterns of what people are talking about. So end of life thoughts was not something. A recent piece of work that we've done is 60 percent of the people that come to us talk about end of life thoughts at some point during their 6 months with us. Now, if that is overlooked or overseen or not recognised, because often who's going to talk about end of life thoughts in a 15bminute consultation with their doctor? Even if that doctor is the best doctor in the world, I don't think I would. That therefore means that this community and the desperation that this community perhaps is feeling might be going unobserved. But if we can look and find different ways, like Sue's doing, or like the Wren project's doing, or like other patient organisations doing, to look at this body of people together and highlight the big issues, the big things that they're screaming to us. The big things that they're saying. And then elevate that, find a way to advocate on their behalf. Hearing that. That's when we create powerful change. And that's, I think, what the project's vision is. We want to really listen and ground ourselves in those individual experiences, listen to them together, the commonalities, and then speak on this community's behalf. And I think that comes to actually at the center of many patient organizations. It's patient voice and if it's not, then it should be because the patient voice and the patient need should drive absolutely everything that we work with the patients to, you know, achieve the best in terms of their ability to continue to live with the disease. I know our goal is that we find working with others, we find a cure, but that's a bit like the Holy Grail. So what do we do in the here and now to kind of minimize the impact of living with those conditions.  

Fantastic. So thank you both. That was fantastic. What's come through so clearly in this conversation for me is that that diagnosis is really only the beginning. And naming someone's condition may open the door to treatment, but it doesn't resolve all the other aspects that we've talked about today the uncertainty, the disruption to daily life or that real need for ongoing understanding and support. So I think the real takeaway is that as a clinician, healthcare, it doesn't end at the clinic door. And if we're really serious about improving outcomes, we have to recognize the essential role of patient charities and that they they're so important. Uh, playing that role alongside clinicians, researchers and, and systems of healthcare. So many thanks to Sue and Kate for sharing your excellent insight and thank you for listening.