We're about to bring in Maddi from couch. Very, excited about it. It's an important topic. We've been working with with them. Obviously, those are reminders as ever. Do go to adhdglobaladhd.com and donate. This is bit of a telethon. It's full. So we have charities coming together globally. People from 55 countries watching on Facebook, LinkedIn, on YouTube. Thank you everyone for for watching and being part of this. Yeah. We're continuing to build. We're running a tiny bit late so jumping yeah. Jumping straight over to to to Maddi. Hello, Maddi.

Hi. Nice to see you. Nice nice to see you too. I I think we've got a bit like I've I've had messages in my ear saying that there were some issues with you coming. So we're very, pleased to have you and I think as we've talked about previously the importance of inclusion for people with ADHD. Charlotte, let me hand over to you. Do you want to introduce yourself and what you guys are doing?

Yeah. Perfect. No. Thank you, everyone, and it's great to be on the conference today. I've been listening in from the start, and, yeah, it's been really interesting and really insightful hearing all the different topics. So my name is Maddi. I'm a researcher at a company called Couch Health. And Couch Health are an engagement agency who work with pharmaceutical companies to make sure that health care is as inclusive and equitable as possible.

Maddi, I'm just gonna pause while my phone is blowing up, but I managed to So we now whenever we put a video on, we have to mute both my microphone and the inputs, we'd left it I'd left it muted, so people poor people didn't get to hear that. And Oh, no worries. Very generously. The table's almost vibrating with the vibrations of people saying, we can't hear anything. So we need to start again.

No worries. Summary.

She's amazing, doing amazing stuff, introducing herself, and she's got some slides which I'm gonna queue up while she tells you all about what she's doing.

No worries. And, yeah, we'll try that again. So, yeah, it's great to be on the conference with everyone today. I'm Maddi. I'm a researcher at a company called Couch Health. And Couch Health are a health engagement agency who work with pharmaceutical companies to make sure that health care is more inclusive and equitable for all people. So I've been invited onto the conference today as couch of running an exciting research project into neurodiversity and health care and focusing on topics to improve inclusivity and accessibility of health care services with quite a strong focus on clinical trials. So I've got about ten minutes with you all to share some of the information about the project and how you can all get involved.

And also just to share some of the initial findings that we've had as well. So just to give you a bit of context to start with about kind of behind why we're doing the research project. So it's well documented that neurodivergent people have more negative experiences in health care, and I'm sure a lot of you have had that experience yourselves. But there's much less research exploring how we can actively improve these services and ultimately improve quality of life for neurodivergent people. And but when we think of health care and when people kind of think of health care day to day, they don't often initially think about clinical trials.

But the reason why clinical trials are so important to consider is that we're exploring new life saving treatments potentially, and, also, we're making sure that new drugs are safe for everyone to use. And so this is why it's really essential for clinical trials to be as accessible and inclusive for everyone to take part in and why it's so important that we educate the industry on how to make sure the trials that they're designing are inclusive for neurodivergent people. And so the reason why I'm focusing on the neurodivergent population specifically today is because there's been very little research looking into the challenges that people might face in the context of clinical trials.

So for example, someone with ADHD might also have diabetes or a type of cancer, and they might wanna take part in a clinical trial to test a potential new treatment for that that condition. So what support is actually available to them, and how's that clinical trial been designed with neurodivergent people in mind to make sure that that process is easier for them? So that's kind of the context behind the project. And at the moment, we're in the stages of conducting interviews, focus groups, and surveys to hear from a range of different people and to understand their lived experiences and barriers when using health care services. So this includes all neurodiversities, so ADHD, autism, dyslexia, Tourette's, dyspraxia.

Every every condition you can you can name. And we plan to share the findings with pharmaceutical companies so that they can ultimately use this research as guidance to inform their future trials. And this piece of work is one of the first to look into this area, so looking into clinical trials more specifically. So we hope that it'll set a precedent for future work. And it's kind of why I'm talking with you all today about it because we really want to make it as big as we can and as collaborative as we can with different organizations and different people. So as I said before, we're in the early stages of the project.

But I did wanna just touch on some initial findings with you all. And I think a few of them have already been mentioned in today's conference. So I've had conversations with a number of different people, different genders, different ethnicities, ages. And, actually, we're finding quite similar challenges across the board. So when I think back to the conversations I've had with people living with ADHD, a key kind of challenge has been the difficulty to remember to book appointments. And I think Henry mentioned that not too long ago. But not even just booking appointments, but actually attending those appointments and then taking the medication that's been prescribed to them.

And this is a really big barrier for people, and it can cause a lot of frustration. As they're very aware that taking the medication will improve quality of life, but it's just that barrier of physically remembering to do this that's kind of stopping them from getting there. Additionally, I've heard about waiting rooms that they can provide sensory challenges for people. So we've got loud music, crowded spaces, quite bright lights. And also a key one with ADHD is sitting around for unknown periods of time. So when we think of a and e, for example, you could be there for two minutes. You could be there for three hours. So it's that kind of uncertainty that I've heard has made people feel very on edge. Additionally.

Sensory processing issues, like finding the words to explain symptoms and pain and actually forming those sentences can be very stressful for people, particularly with people with dyslexia and autistic people. And they can find it quite challenging finding the correct words to explain a symptom, for example. And this can cause a lot of anxiety, and the doctor might not be able to provide optimal care for them. So it goes both ways as being quite a big challenge in the community. One thing that was particularly difficult to hear for me was a lot of people actually have to resort to using private health care and just to have an easier health care experience.

I know getting a diagnosis is very challenging, and and a lot of people go privately if they can. But we know this isn't an option for everyone, and it's something that we do need to urgently address. We want everyone to feel comfortable using NHS services, essentially. And finally, on the negative points, we've got stigma. So a lot of met a lot of people mentioned how often they feel like health care professionals can judge people for having a neurodiverse condition. So a doctor might hear that someone is autistic or has ADHD, and they already judge how they might behave or how they might understand information. So there's kind of an unconscious bias there.

And this has caused some trauma for people, and actually people are reluctant to share or disclose their neurodiverse condition with health care professionals, which in turn, people get less access to treatment and services that might help them. So although there are a lot of negative experiences that people have faced, there were quite a few examples of positive experiences that we hope we can build on and kind of within this research project that we want to highlight these experiences to make sure that we can recommend these for future future trials and just future health care services generally. And one of these one of the core ones was hiring more neurodivergent health care professionals, so autistic doctors, doctors of ADHD.

And people talked to me and said, it's like they're speaking in their own language when they're when they get given a doctor who also has ADHD. And this is really reassuring and comforting for people, and I'm I'm sure people on the call might might agree with that. And this is something that can easily be implemented in the health care setting. I did just also wanna mention a quote that kept popping up in the interviews, that was small changes are essential for some but helpful for all. And what I mean by this is very small changes like sending out reminders to take medication on a clinical trial, for example, or sending out more information so people know what to expect from timings.

This is gonna be essential for some people taking part in the trial or in in a doctor's appointment. But, also, it's gonna be helpful for everyone. So no one's gonna be disappointed by receiving an extra reminder, for example. So we're not asking the pharmaceutical industry to make huge changes. We're just asking for small considerations to be made that will drastically improve experiences for people. Additionally, we heard a lot about patient engagement and collaboration. And one quote that stuck with me was, don't do things to people, do things with people. So, again, it's kind of why we're doing this research project, you know, asking people what are your experiences, what do you need to see change.

And how can we implement that? And it's as simple as that, really. So we're in the as I said before, we're in the early stages of the project, and we're still running the survey. I would really love for as many people as possible to take part in the survey and contribute to the findings of our work. So I am I'm inviting anyone who's neurodivergent to take part on the call. You don't need a formal diagnosis. We all know how hard that can be and how long that process is. So, yeah, anyone who considers themselves to be neurodivergent. And we also would love for carers or loved ones or family members of someone who's neurodivergent to take part. We'd love to hear your experiences with health care and how we can make a change. So.

The link to the survey was on the website, but I'm gonna post it in the the chat today. Or if Christine or one of my couch colleagues could do that for me, that'd be great. And it would only take fifteen minutes to do if you just get a few minutes to do that. I'd also love to hear from any organizations who would like to get involved in this project. So any any organizations that support people with near neurodiverse populations. We just wanna make sure this report is as big and collaborative and as helpful as possible. So whether that be you sharing the survey with your networks or getting involved in the reviewing process and making sure what we're doing represents your community essentially.

So, yeah, any contributions will be really valuable. And I will leave my email address somewhere as well if you're interested.

So the link to the survey is on the schedule. So go to globaladhd.com and what's it there? Do you consider donating? It's very, important what you guys are doing. Genuinely, it's in my sort of horror share of things when I really think about stuff that worries me. It is that issues around medication and letting something that would otherwise be fine become a problem because of my struggles around compliance on it. So your focus on getting inclusion for people with neurodiversity with ADHD is a big deal and we've been talking for a number of months now on it and a part of it and we're very pleased and so thank you.

And thank you for helping us as well. You've been a great support on the research project. Oh, well thank you. We're running late so we've got to run.

So we've got to go straight over to our next. But I just wanted to say thank you so much. It's really important what you're doing. And to be honest, I also think for people watching it, it highlights that some of the other challenges around ADHD and that we to work on and the fact that you're doing work is wonderful so thank you.

No, no thank you.