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So Who Cares Anyway E 29 Inclusive Future in Your Pocket · SoWhoCaresAnyway

• 0:04
  Hi, I'm Ruth Germaine, and this is, so Who Cares? Anyway, a podcast shaped by my deep curiosity about who cares, what do they care about, what do they do, and why does it matter? My aspiration is to build a community that listens with intention.
• 0:20
  And explores care from every angle from the North Yorkshire malls to behind clinical doors.
• 0:27
  Each episode invites people to share their stories, their ideas, and talk about what matters to them.
• 0:34
  Together we reimagine what care could be and how we might shape health and wellbeing through the assets, values, and the lived wisdom of our communities.
• 0:44
  And why does it matter? Because for too long, health and care have been treated as things to be delivered.
• 0:50
  Often depleting systems and the people around them, and it's time to rewrite the narrative to center everyone as a contributor, not just a recipient, to offer joy, hope, and meaningful belonging to invite each of us to shape the future of health and wellbeing with courage.
• 1:09
  With creativity and with care, so who cares.
• 1:13
  Anyway, hi, it's Ruth here and today I'm delighted to have Naveed Al join me now Naveed's a gp and he's coming on to tell us about some work that he's done for.
• 1:26
  People with learning disability and autism and an app that he's developed.
• 1:31
  But actually there's so much more to this conversation, like every conversation that I have.
• 1:36
  So Nave takes us sort of on a journey about how he works with the impossible, just meeting barriers every part of the way.
• 1:43
  You really hear Neve's passion come through.
• 1:46
  And I would definitely say hang in there.
• 1:48
  Stay till the end.
• 1:50
  Because right at the end I asked Avi a question and it really reframed everything and I think I could.
• 1:55
  Seeing Navid and certainly seeing his face because obviously we do this where we can see each other, um, a moment where he had a moment of reflection and yeah, it just moves a step on.
• 2:07
  So it's worth staying and we're staying to the end.
• 2:09
  Thank you so much for joining us today.
• 2:14
  Hi, and welcome to the next episode of So Who Cares.
• 2:16
  Anyway, and today I am really delighted, um, to have Navid with me.
• 2:21
  So Navid, um, and I first met when, um, I went along to a conference back in September last year, I think it was at Canterbury, Christchurch University.
• 2:32
  Um, and Naveed was, um.
• 2:34
  Presenting there, talking about Triton Health and an app that he had developed for people with learning disability.
• 2:40
  Um, my understanding now is that that's really moved on Nade from where we were.
• 2:46
  But what I will just say for viewers as, oh, sorry, should I say listeners as well, is that we actually recorded this podcast.
• 2:53
  Back in March and we had real issues with the sound and the sound technology and it didn't work.
• 2:59
  So I think that's my excitement as well.
• 3:02
  Um, it's just so lovely to see you again, so thank you.
• 3:04
  I'm gonna come over to you so that you can just give yourself, um, a bit more of an introduction please.
• 3:10
  Absolutely.
• 3:10
  Thank you, and it's definitely nice catching up with you, Ruth.
• 3:13
  Uh, I do follow some of your work and, and it's amazing.
• 3:15
  Um, so yeah, just a a bit about myself.
• 3:18
  Um, I'm a GP by training.
• 3:20
  Um, I've been a GP since 2014, a doctor since 2008, and my special focus shifted towards, uh, looking after people with learning disabilities and autism.
• 3:30
  And that's where it kind of moved further into digital health, especially around the time of COVID to see how we can prevent, um, complications.
• 3:40
  Uh, also in the background, I've also worked in the humanitarian sector, working in Africa, middle East, Europe, um, working mainly in refugee camps and disaster zones as well.
• 3:50
  And I have to say that experience helped a lot in this work that we're doing as well.
• 3:53
  So, uh, yeah, that's me in a nutshell.
• 3:56
  Yeah, and I've really seen all the things on, um, LinkedIn.
• 3:59
  So I follow you there and you've done so much since I last saw you, um, around that, um, humanitarian work.
• 4:06
  And last time that we spoke, you spoke about some of that work and you spoke about your sort of drive and passion that sort of led you to start to develop.
• 4:14
  Triton Health and I just swear, actually, do you know what we didn't do at the beginning? I was so busy chatting and excited to see you.
• 4:20
  I just kept saying, Navid, we should really give people your full name.
• 4:23
  You're a GP as you said, and it's Navid al, isn't it? So I know that would go out in the notes, but I think it's always been really important because you know there's often more than one Navid or Ruth in this, well, to say our full names as well.
• 4:35
  So I should have said that at the beginning.
• 4:37
  But you've been doing a lot and you really talked last time about your passion and what.
• 4:40
  Um, drove you towards setting up Triton Health.
• 4:43
  So I wonder if you want to talk about that a bit more, um, and maybe just bring in some of that humanitarian work, because I know that was a real drive and passion for you to try and think about things.
• 4:53
  Bigger and broader than perhaps what you were doing when you were working in general practice? Yeah, absolutely.
• 4:58
  So when I was training as a junior doctor, I remember a, one of my first ever experiences was watching images, um, of the floods in Pakistan in 2010.
• 5:09
  And that's when a, a doctor called me and he said, look, we need some medical help.
• 5:12
  And, uh, there's a shortage of doctors.
• 5:14
  Do you want to, do you want to go? I, I hadn't really considered it, but then I saw the images and the photos, and then next thing I know, within a week I was flying out to Pakistan.
• 5:24
  Ever since I landed and started treating patients, attending meetings, it was, it was quite a different experience.
• 5:31
  Uh, it was full of fear, but at the end we felt we, there's a lot that we did do, um, and it's something I wanted to continue.
• 5:39
  So since then, since that time, we, I.
• 5:42
  Traveled to the Middle East during the Syrian refugee crisis.
• 5:45
  Went to Nepal after the earthquake, uh, Bangladesh.
• 5:49
  With the Rohingya crisis.
• 5:50
  We also worked in Sierra Leone, which was after the Ebola crisis.
• 5:54
  Um, and I realized that each setting had its own unique needs.
• 5:58
  Um.
• 5:58
  But it was the fact that you're working with limited resources, uncertainty, and some of the most vulnerable groups in the world.
• 6:06
  And then during the pandemic, when we're all in lockdown, um, you know, before that I was always reading reports about patients with learning disabilities dying prematurely, and how much of a disservice we do as an institution, as as a healthcare organization, um.
• 6:22
  And that's when I saw the digital revolution taking place.
• 6:25
  Everything was being digitized, um, remote triage.
• 6:28
  And, and that's when I wanted to see that, how can we build a digital solution for this particular vulnerable group.
• 6:34
  Um, we had a lot of skeptics at the time.
• 6:36
  They said, look, this is a, you know, this group don't do apps.
• 6:40
  They don't do digital, you know, leave it to the specialist.
• 6:42
  But I wanted to do something and, uh.
• 6:45
  And that experience in the humanitarian sector, especially around uncertainty, working in challenging situations has helped me a lot.
• 6:51
  Um, and as you followed my journey, we are here today talking about AI and some new features.
• 6:56
  So, but yeah.
• 6:58
  Wow, that's really interesting.
• 6:59
  And I just wanna come back to that.
• 7:00
  You talked about, um.
• 7:02
  You felt full of fear.
• 7:04
  Can you explain that? 'cause to me, I'm thinking, I can see that it must have been fearful going into that new situation, but um, yeah, it'd be nice to understand that a bit better.
• 7:13
  Sure.
• 7:14
  Absolutely.
• 7:14
  So you hear a lot, obviously parents worry, your family worry 'cause you're going into an unknown area and then they send you a briefing of what to do in a kidnapping and, and what to do when you're robbed.
• 7:25
  And there were some cases like that as well, especially, which is understandable because you've got.
• 7:29
  You're in an area of limited resources and you know, vigilante group set up and so on.
• 7:34
  So they teach you how to escape and how to negotiate with, you know, if you're in a hostage situation.
• 7:39
  So that just fear bills and bills.
• 7:41
  And then when you are working in different situations where you are working with Army, um, that control the area, uh, when you, uh, talking to talking at checkpoints, um, you've gotta negotiate in such a way to make sure that you're neutral.
• 7:55
  Um, and.
• 7:56
  So, yes, and I think having some fear helps because you don't want to be complacent, um, because you do hear stories where your humanitarian team are held at the airport or um, held at police station, and often it involves a lot of negotiation, but having that fear over time, um.
• 8:14
  Dissipated.
• 8:15
  But I gotta say, when I first started, it was just the fear of unknown.
• 8:18
  Where am I going? Um, they'll tell you that you've got limited resources, you'll be staying in tents.
• 8:23
  Um, you'll have limited showers, you'll have limited this and that.
• 8:26
  And you know, you, you're used to your home comforts and then when you arrive it, it's not actually as bad as you think, but it's, uh, yeah, it's fear of not knowing what to expect.
• 8:36
  Thank you.
• 8:37
  And that's really quite interesting and I'm sort of thinking about the fact that, you know, there's actually a lot of press, isn't there? In the UK around the fact that people are going to work.
• 8:45
  And somebody was telling me the other day that a nurse went to work and somebody in the a e department pulled a gun on her.
• 8:52
  And we are seeing and hearing more and more violence.
• 8:54
  Now, I know that isn't the same as kidnapping and the things that you are describing, but actually quite often we are working in, people are working in unknown situations, not quite sure who they're gonna come, who's gonna come in and see them, particularly working in somewhere like a and e or general practice.
• 9:09
  Um, and.
• 9:10
  It might just be the unknown, as in what do I do and what resources have I got and feeling like they haven't, people haven't got everything.
• 9:16
  And actually fear of, you know, who is it that's gonna come and see me and are they gonna be nice to me today or worse still? Are they gonna be unpleasant to me today? So I should imagine there's a lot that people might be able to draw on than that you draw on, um, when you're doing your work here, particularly around that, um, neutrality.
• 9:32
  I thought that sounded really interesting.
• 9:34
  Yeah, absolutely.
• 9:35
  It's interesting you mentioned emergency and my first training started in emergency medicine before I switched careers into primary care.
• 9:42
  And you're absolutely right.
• 9:43
  Um, you know, you're dealing with in uncertain situations, especially in, in the city areas where you'll get rival gangs turning up in.
• 9:50
  A e departments and they suddenly see each other and you're caught in the middle and, and there's a lot of fear as well.
• 9:57
  So you, you are negotiating.
• 9:58
  Um, and, uh, it's not as, same as, not the same as in an on an international situation.
• 10:04
  Um.
• 10:05
  But you have to negotiate yourself.
• 10:07
  And even when you're leaving a e at nighttime at two in the morning or four in the morning, um, you know, there've been some interesting incidents as well afterwards.
• 10:15
  But overall there is an element of respect, um, by these, by these particular groups.
• 10:20
  Um, and you know, you do get through it, but you're right, you're never safe.
• 10:23
  And as you can, you know that there's been incidents where healthcare staff have been attacked.
• 10:28
  And sadly now you see more and more signs up in, um, GP surgeries and a e departments to, you know, warning people not to, you know, to respect the staff.
• 10:38
  Yeah, I think we could probably go on to quite a long conversation about that actually.
• 10:42
  So I, I am gonna stop it there, but of course it links in with so many of my previous episodes, but, and it might come up again, but what I really wanted to talk to you about, as you know today, was around that Triton Health and the bit that you've already alluded to, that AI and that app.
• 10:57
  Um, so I think the first bit is why, particularly people you spoke about, that people learn, uh, with learning disabilities.
• 11:05
  Dying prematurely.
• 11:07
  But what was your experience and what was it that made you think, you know, you said that there was people saying, no, don't do this.
• 11:13
  Leave it to the experts, let them come and see us.
• 11:16
  What was it that really drove you to think? 'cause that must have been quite hard to say.
• 11:20
  Hang on a minute.
• 11:21
  I don't actually agree with you.
• 11:21
  I think that.
• 11:22
  An that would work.
• 11:23
  I do think we could use ai.
• 11:25
  What really pushed you and, and drove you to do this work? Yeah, so you, you know, you read the reports, you know, the life expectancy is 20 years less than the average, uh, person, someone with a learning disability.
• 11:36
  And at the time, almost half the deaths are avoidable and you keep seeing the same reports again and again, whether it's constipation or pneumonia.
• 11:44
  Um.
• 11:45
  And this particular group, when you go and see them out in the, in the community, during home visits or when they come to your room, they are so vulnerable.
• 11:52
  Um, you know, you could, as you rely on caregivers, and there's a huge communication, uh, gap barrier and it's already difficult as it is.
• 12:02
  And yes, we've introduced annual health checks and, and they are proven to reduce, you know, um, complications.
• 12:09
  But still it was very difficult And, and I could see why my colleagues.
• 12:13
  Said that at the time they were trying to protect me because, you know, you want to avoid disappointment and you know, you, you do get your skeptics and, and say, look, this is a very difficult group.
• 12:24
  Um, even when you're looking for funding, it's 'cause it's a small group.
• 12:28
  You know, you, it's not the same.
• 12:30
  But however, um, I have to say there are some people that really support you and some of the people that supported me are like.
• 12:36
  Learning disability nurses who are angels to me.
• 12:39
  And so they start believing in your mission.
• 12:41
  They start helping you, giving you the, uh, encouragement even when you're close to giving up.
• 12:46
  And you learn more and more cases.
• 12:48
  And it, and then the most important part is when you meet people with lived experience in the community, people with learning disabilities.
• 12:55
  And I'll never forget when I first met my first group, um, called production group, and they said to me, we've never seen a doctor like this before.
• 13:02
  Are you really a doctor? Um, and I said, yeah, I'm a gp.
• 13:05
  And, uh.
• 13:07
  And nearly all of them were scared of their gp.
• 13:09
  Um, one said, um, I, I feel very scared because my doctor never talks to me and nobody ever tells me anything and, and so on, and.
• 13:17
  And I remember leaving my very first event, that core production event, feeling very sad.
• 13:22
  And I just sat in my car just staring, um, in space and thinking, gosh, this is a bigger task than I thought.
• 13:28
  Um, but you just keep going.
• 13:30
  And I think, again, I bring it back to my earlier experience in, in the humanitarian sector is, is working with the impossible.
• 13:37
  Um, you'll get lots of nos, lots of doubts, but eventually there's those few people that believe in it.
• 13:42
  So you just keep going.
• 13:44
  And now.
• 13:45
  Because of our work, work with people with learning disabilities, it's starting to, um, have spillover effects in other areas, which is really good for us.
• 13:54
  Um, so yeah, it's, it's been a, a tough journey at first.
• 13:57
  It's still tough now, but it's, uh, the no regrets we.
• 14:01
  It's been, uh, quite fascinating.
• 14:03
  Thank you.
• 14:04
  And, um, I really like that bit that you've just said, the working with the impossible, you know, so, and, and how sad was that, that, you know, you were feeling like you're working with the impossible, but actually there was people saying to you, oh, I'm not being, I'm not being listened to.
• 14:19
  People don't talk to me.
• 14:20
  And that bit, are you really a doctor? I mean, that's quite sad, isn't it? I wouldn't expect you to chat, talk to me, um, in this way, because you're a doctor, I'd expect you to talk to me in a different way.
• 14:31
  That's essentially what they're saying, isn't it? And I find that so sad.
• 14:35
  Just on a side, I don't know, um, if you listen to this particular episode, but you talk about the learning disability nurses, I, you know, I'm involved in some work at the moment and there's just such a reduced number.
• 14:45
  So few people are going into learning disability nursing, and I had two amazing student learn disability nurses on the, uh.
• 14:54
  On the podcast just talking about the fact that they needed to, you know, we need to think about how do we get more people into that and why is it important? And I think some of it is because people don't understand the unique skills that are needed in order to support people with learning disabilities.
• 15:09
  Just, uh, to add to what you just said, um, I was recently in America and I travel to America a lot, um, on this, in, on this subject around, and in America they call it inter intellectual developmental disabilities.
• 15:20
  They are fascinated.
• 15:21
  By the fact that we have learning disability nurses and they think it's quite remarkable and unique.
• 15:27
  Um, and that's something that they wish they had as well.
• 15:30
  So, you know, if, and then, then I tell them how learning disabilities work, supporters and annual health checks and community complex cases, et cetera.
• 15:39
  And yeah, I, I think internationally we are very well known for this work and I just really wish we can support it further.
• 15:46
  It's a shame, isn't it? When we get recognition internationally of something that we're doing well and actually we are just not actually managing to recruit people into those roles, perhaps 'cause they just don't understand what it is and what difference that will make or do you know? And then of course the universities are not wanting to put the programs on.
• 16:05
  Um.
• 16:05
  People aren't feeling those places.
• 16:07
  So I think the bit, the bit that I'd like to go to now, Naveed, if you're happy with that, is to, to sort of ask you a bit more about the app that you've developed and if you perhaps start to explain to people what it is, um, and what it looks like, because I know it's quite involved and quite in depth.
• 16:24
  Um, but at the same time, absolutely incredible.
• 16:26
  Absolutely.
• 16:27
  Yeah, definitely.
• 16:28
  I mean, one of the sparks.
• 16:29
  Was when I was on a home visit and I saw, saw someone with a learning disability, playing games on, on, on an app, on, on their phone.
• 16:37
  And um, and I thought, okay, what if we built something, um, like a personal digital diary? Um, but we gamified it, made it fun.
• 16:45
  Um, 'cause I was aware of easy read letters where, where nurses were using.
• 16:50
  Symbols or images next to text.
• 16:52
  And I said, what, what if we put that as an in an app? And then there was other conversations happening in the background.
• 16:57
  For example, um, hospital passports.
• 17:00
  There were huge documents.
• 17:01
  There was over 200 different versions across the country.
• 17:03
  And I said, what if we digitize that? 'cause every time I, my my patients, when you went to the hospital, did you take your hospital passport with.
• 17:10
  No, I didn't.
• 17:11
  I forgot.
• 17:11
  However, I took my phone with me.
• 17:14
  So all these sort of conversations were coming in place and when I was seeing patients, um, for example, epilepsy's very common and you see, uh, charts and, and little booklets of epilepsy recordings.
• 17:26
  And, but if we could digitize all that and bring it all together into a single platform, start with the individual with a learning disability.
• 17:33
  So we said, let's talk, let's focus on mild learning disabilities.
• 17:37
  'cause locally we found.
• 17:39
  Eventually we found out it's a national issue, that those with mild learning disabilities were more likely to end up in a e to seek basic treatment because they can't access gp uh, appointments.
• 17:50
  And so we said, let's target mild learning disabilities and let's call it a personal diary where.
• 17:56
  It's to record how you're feeling every day, your mental health, uh, what activities you're doing every day, um, whether you've done, and, and a lot of it there's health promotion elements.
• 18:05
  So, did you drink any water today? Did you eat any fruit today? And so on.
• 18:09
  And every time they record something like that, they're picking up power stars.
• 18:12
  Um, they, they, they can gather enough stars to get vouchers or build a world inside there.
• 18:18
  There's a game inside.
• 18:19
  They can use some of those.
• 18:21
  Um.
• 18:22
  And there's prompts in there, reminders, uh, medication reminders, because many of my patients, our user group said we'd love to take our own medicines, but I just keep forgetting.
• 18:32
  Um, and people with learning disabilities, the dementia onset is earlier.
• 18:35
  So we said, okay, let's build a huge medication section in the app, but we'll make it easy to see with reminders in there with images and so on.
• 18:44
  So every time we were talking to our focus groups, they were giving us new ideas.
• 18:49
  Um.
• 18:50
  For example, one group said, can we share these readings? Can you make it easy to share them with a doctor? Yes, let's do it.
• 18:56
  Let's get pin codes in there, and QR codes, et cetera.
• 18:59
  Um, family said, look, those with complex needs said, what about us? You've left us out.
• 19:04
  We'd like something as well.
• 19:05
  So go to an adjacent app that connects to the existing app so they can record more information like bowel movements and, and urine output and things like that.
• 19:14
  So every time we were adding new features based on feedback, um, but the whole concept was.
• 19:20
  Digital diary that connects mental, social, and physical health together onto a single platform.
• 19:26
  And that data can be shared with doctors and nurses, either in person or remotely.
• 19:31
  So that's fascinating.
• 19:32
  And I know that when you were at the conference, you were showing some pictures around this and I think the co-creation that went into this.
• 19:40
  So you had some pictures and then you talked about how the groups came back and said, well, those pictures were good, but actually we'd like them to look more like this, or it'll be easier if it looked like that.
• 19:50
  And I think the gaming side really took off as the um, app continued.
• 19:56
  Um.
• 19:57
  And I think the response as well, if I remember rightly, was that people were saying, actually, we just really quite enjoy using this.
• 20:04
  Exactly.
• 20:04
  I mean, the feedback, to give you an example, we did our very first pilot with East London Foundation Trust, and they have an amazing, uh, multidisciplinary team of dieticians, speech and language therapists, learning disability nurses, and they brought people with lived experience into those meetings.
• 20:19
  In all honesty, I used to fear those meetings 'cause we had a very basic app and the feedback was sometimes brutal.
• 20:25
  And it was good though.
• 20:26
  Every time we get got feedback, I'd go back to the developers and designers and say, look, we need to change that.
• 20:31
  So in the presentation, which you saw in Kent, there was some examples, for example, of medication.
• 20:36
  When we first introduced our medication design, we thought, we've done it, we've cracked it.
• 20:39
  This is so good.
• 20:41
  And the feedback was, no, it's not.
• 20:43
  Can we have images of medicine? Can we take our own photos of the medicine rather than you putting your own image? And um, when we recorded activities, they said, you've missed out, um, cycling.
• 20:53
  I go cycling.
• 20:54
  So we said, let's go back again.
• 20:55
  Uh, certain foods and fruits, um, based on ethnicity, we missed out certain things and it was really good for us.
• 21:02
  'cause every time we were going back and adding new features, and they, and they felt really good because they said, you're actually listening to us.
• 21:09
  And I often asked him, I said, do you use the NHS app? And no one puts their hand up.
• 21:13
  And we said, okay, if we had something similar.
• 21:16
  Could this potentially connect into the, into, you know, uh, apps like the NHS app and so on from there? So yeah, so core production, it takes longer, I have to say.
• 21:25
  It's, uh, but the best part is that the feedback is important and then the gamification was really important.
• 21:31
  Um, 'cause we asked our autistic users, for example, uh, one of the popular games they told us was, uh, like Monopoly, go and, uh, Minecraft.
• 21:39
  They said, we like building our own world.
• 21:41
  We like that escape.
• 21:43
  So again, I would.
• 21:44
  Engineers said, right, let's build this, build a similar game where they can.
• 21:48
  And now we've noticed our autistic users are some of the heaviest users of the app because of that feature.
• 21:52
  So it's, it's, uh, every time it's a matter of just listening again and again, uh, from that side.
• 21:58
  And so what are the, I mean, I can.
• 22:00
  Sort of think about the positives and things, but nave, what are the positives that are coming out of this? And I'm thinking about the individuals that are perhaps using the app, but also what about, you spoke earlier on about QR code.
• 22:12
  Some people that perhaps they're going to see whether that be a doctor or a learning disability nurse, physio, or whoever else it is that's being able to see being able to share some of that.
• 22:22
  Is there anything that's coming out of that that is perhaps, um.
• 22:27
  Obvious to you, but also was there anything that was a bit more unexpected that you thought, I didn't expect that to come up.
• 22:32
  Yeah, that's a good point actually a good question.
• 22:34
  I mean, um, I remember speaking to a, a parent and, uh, she had a child with complex needs and um, and she said, I have to go to different hospitals.
• 22:44
  And each of those hospitals used different systems.
• 22:47
  Different, um, IT systems and the number was five and that really shocked me.
• 22:52
  Five different systems within the same borough city.
• 22:55
  And she said, look, can you give us something that we can share rather than having to rely on doctors to, to, you know, do that.
• 23:02
  So that's when we spoke to our engineers, we said, how about we then make it easier for.
• 23:06
  Um, for the, either the parent or the individual to share.
• 23:10
  So we thought of lots of different ideas and the one we came up with initially was, um, is to share a pin code.
• 23:16
  Every user's got their own pin code.
• 23:18
  You go to your doctor and there's a big share button tab on the side click share, and it asks you, are you with the doctor now? Yes.
• 23:25
  Click yes.
• 23:26
  Here's the pin code.
• 23:26
  You show it to the doctor.
• 23:27
  Doctor can have temporary access to your data on their dashboard, and then that, that data disappears, and that's like a one, one time access that they can get.
• 23:37
  This was all based on feedback, because we first built the dashboard first and then the app, we thought that, for example, GPS will be looking at the dashboard.
• 23:46
  They were not doing that, so we said, let's, let's move the data to the patient side.
• 23:51
  Um, so each time we're just looking at what's.
• 23:54
  What's easier to share? Um, what's easier to, um, to get that information across to that healthcare professional? Because I know time's limited on their side.
• 24:03
  Um, and that's the good feedback that we're getting is now it's patients.
• 24:07
  I've gotta stop saying patients, people, uh, with learning disabilities, I know it is, are actually finding it easy to share with their doctor now, and many feel empowered.
• 24:16
  Because, so especially those who are autistic, they say that they shut down when they go and see their doctor, they feel nervous.
• 24:22
  They can show them the Medi app and say, look, this is, this is me.
• 24:25
  I'd like you to have a look at this particular area of the app.
• 24:28
  Um, and so on.
• 24:29
  So that's, that's what we're looking at and we are getting good feedback as well.
• 24:32
  That's absolutely amazing.
• 24:34
  And what I'd like to hear now is have you, you know, you talk about people and Yeah, I'm the same.
• 24:39
  I, I love the word people rather than patient because I want to, we become a patient anyway.
• 24:43
  We're all people, aren't we? Um, but for the people that are actually using the apps, you've said about the fact of them being empowered.
• 24:49
  But I don't dunno if you've got a, a story or something that's happened that couldn't.
• 24:54
  Perhaps just bring it to life to people to think, oh, that's amazing.
• 24:57
  You know, so, and, and understand what's going on.
• 25:00
  I know obviously there's confidentiality, but if there is something that you can share, that would be great.
• 25:05
  Sure.
• 25:05
  Absolutely.
• 25:06
  So there's two stories, two good examples so far.
• 25:09
  Um, uh, one is when we introduce it in sense schools and, and the interesting part was it was a school teacher who was, uh, really happy and she said, one of my biggest fears, um, is the fact that when we, when these pupils.
• 25:23
  You know, graduate leave school, who's going to look after them? Um, because when they enter the adult world, they're pretty much lost in the system.
• 25:30
  And, you know, you looked after, well in the pediatric phase and she said, I'm constantly trying to introduce something like this.
• 25:37
  The, the best part of this medi app now is that they introducing it while they're in school.
• 25:42
  It becomes part of their daily diary so that when they, and they get used to that self-monitoring behavior, and then when they leave school, they take this medi app with them.
• 25:51
  So it's that reassurance and it's, that's been the best, some of the best feedback from the, the STEM school teachers, for example.
• 26:00
  Um, and the other one is more anecdotal individual.
• 26:03
  Um, one of them said, I went for my annual health check and the GP was asking me questions and I showed him my medi app.
• 26:10
  The doctor was interested, oh gosh, tell me more about this.
• 26:13
  And she said he was writing things down from the medi app on his computer.
• 26:17
  So that was an indication for me that, gosh, then that means that data is being used by the doctor.
• 26:22
  Um, and.
• 26:24
  And these are some of the feedback that we're getting.
• 26:26
  And then we look at the data usage of the app as well.
• 26:29
  Um, and when we introduce it in the community with self-advocacy groups, um, at least 82% are using the app three times a day to record their information.
• 26:38
  Um, and we notice that the share function is being used quite a lot.
• 26:41
  Either they're sharing that information with the carers, um, or with the doctors as well in the app.
• 26:46
  And that's encouraging for me because it's that communication that.
• 26:51
  It I, something we have to bear in mind.
• 26:53
  It's, we're talking about decades of almost neglect.
• 26:56
  Um, and we're building these new communication channels and I feel this is a, a good early start for us, and that's something that we really want to capitalize on.
• 27:04
  Thank you, and I think there's, you know, there's so many positives.
• 27:07
  One of the things I remember us talking about before, and I can't remember if it was at the conference or when we had our previous chat as well, you spoke about the fact that one of the things that people were recording was things like their mood and whether or not they had exercise, but also noticing that.
• 27:22
  Sometimes these things were interlinked with, perhaps with, you know, people with epilepsy, which we know we often see more often in this community we're more likely you could actually look at that data or look at that information and they were perhaps more likely to have a fit at this time, or maybe there were other things happening.
• 27:38
  So there was some.
• 27:39
  Interesting bits around there that I remember talking about and that you explained before.
• 27:43
  Definitely.
• 27:44
  So one of the areas I really want to do, want really want to work on is because we are capturing mental, social, and medical information in there.
• 27:51
  To give you an example of epilepsy, I'm glad you brought that.
• 27:54
  Because it, almost one in three people with learning disabilities have epilepsy.
• 27:58
  And so what we're trying to do is, what we want to do is connect that information.
• 28:02
  So if some somebody's seizures go up, for example, and they're having more frequent seizures, what's the reason? So yes, medication compliance is one reason, but there's other factors too, such as, um, even constipation, uh, sleep quality, which is something that we check in there.
• 28:18
  Uh, mood as well.
• 28:19
  Uh, hydration levels and things like that.
• 28:22
  And what I'd really like to do is that data that we are collecting in the app, it will help inform the doctor using AI to say, look, the seizures have gone up.
• 28:31
  Maybe there's other social factors in there rather than just the medication.
• 28:35
  Because the first thing we do medical as medical is that go straight to the dose adjustment, increase the dose straight away.
• 28:42
  But we neglect the mental and social side to things of why those seizures might be going up.
• 28:46
  Is it stress, et cetera.
• 28:48
  So that's something that we'd really like to do now is connect those dots, um, to see what else could be happening.
• 28:53
  Um, another example is sleep apnea very common in people with learning disabilities.
• 28:57
  What could be the reason? Um, so weight monitoring is one of them.
• 29:01
  Um, sleep quality is another one we want to see.
• 29:04
  What else could be the reason? Is there other mental health factors that's.
• 29:08
  Uh, resulting in poor sleep, um, overeating and and so on.
• 29:12
  Is it the medication? So.
• 29:14
  We want to connect that.
• 29:15
  And the beauty of it, because of this AI revolution is that we can get there faster now.
• 29:20
  Um, and that's something I'd really like to work on.
• 29:22
  But even before that, when all that data is pre presented to the doctor, uh, say for example a neurologist in a hospital, they'll see the seizure charts, which are presented by carers, but they can see other information too, which they can address, um, from there.
• 29:37
  And that way we can hopefully reduce our reliance on medication.
• 29:41
  Um, the, you know, because these medications, especially antiepileptics, have tons of side effects, um, which sadly sometimes results in poor compliance because of the side effects.
• 29:52
  So we've got a, a good opportunity here to work in the community, get information, rich data, um, to see if we can look at other factors.
• 30:02
  I just find it absolutely incredible the amount of detail and understanding that you're producing around an individual.
• 30:09
  Um, but at the same time that is able to be used by so many people to really understand them.
• 30:16
  And you talked about there about the mentor.
• 30:18
  Social and the medical.
• 30:20
  So yeah, and I hadn't sort of thought about it in that way, but yeah.
• 30:23
  What's your mood like? Are you sleeping, the social things, is there room, you talked about sort of activities like the sports, so there's room presumably for them to put those things on.
• 30:32
  Are there other things around that sort of social aspect that are included as well? Sort of who their carers or anything else? I don't know.
• 30:39
  Absolutely And, and that's something that we, we want to know as well because the carers.
• 30:43
  Sometimes you'll get lots of information from different sources.
• 30:46
  So might be some information from, uh, family members, uh, professional carers and and so on, is how can we get all that information together onto a single platform.
• 30:55
  Uh, because sometimes often we find is, is when a, when a carer or a caregiver brings.
• 31:00
  A patient to your clinic, they'll, they might not be the person looking after that, that you know, that, that patient.
• 31:06
  And they'll say, oh, I'm just here.
• 31:07
  This is my duty to bring him here.
• 31:09
  And it was somebody else looking at, looking after.
• 31:11
  So what we need in the background is continuous information, um, in the background being recorded so that when before they walk into your room, there's an AI generator summary guiding the doctor.
• 31:22
  Where we need to focus on based on multiple sources of information that have been entered in the app.
• 31:26
  So then again, that's, that's gonna be really important, especially with the new focus of working in the community, um, shifting care in the community.
• 31:35
  The best part is that if we build that platform now, we'll get lots of good information from different sources.
• 31:41
  Um.
• 31:42
  A lot easier and faster using digital.
• 31:44
  Thank you.
• 31:44
  And I'm just wondering, so you know, I've asked you lots of questions.
• 31:48
  If we, like today, I've sort of like bombarding you and it probably because we've had a couple of discussions and there was lots going on.
• 31:53
  Is there anything else that you are sort of particularly excited about or that's happening or that's new since I spoke to you last? Uh, yeah, and by the way, these are very good questions.
• 32:03
  Gosh, it's, uh, it's, I'm reflecting on myself as I answer your questions.
• 32:07
  It's like, gosh, I've done that too.
• 32:08
  Really? Um.
• 32:10
  I've got a brilliant team, I have to say.
• 32:12
  And your success depends on your team.
• 32:14
  I know it's cliched and so on, but it, it, it really does matter.
• 32:18
  Um, so one big area that we're looking at, as I mentioned AI a few times, is having an AI companion.
• 32:23
  That's a really exciting part for us.
• 32:25
  An AI companion.
• 32:26
  We called it Kiki.
• 32:27
  It's a little helper bird inside the app.
• 32:29
  And what Kiki does, it talks in simple language and it's like a companion to someone with a learning disability.
• 32:35
  So if you want to say, okay.
• 32:36
  What does Paracetamol do? Um, what, what's an annual health check? What's a flu jab and what? What Kiki does, and you, you can talk to Kiki or you can type, um, and they'll explain it in simple language, or you can say to Kiki, look, I'm really nervous about going to my doctor today.
• 32:52
  What shall I do? What Kiki won't do is give medical advice.
• 32:56
  We we're doing it very slowly, but what we want to do is, is become a companion, and then on the other end, if there's a carer attached to that app.
• 33:05
  Carers can use the AI function in the app to say, can you gimme a summary of a men Alice's mental health for the last week? So the AI will summarize that info information and give additional information as well, or mood has been low, maybe it's because she hasn't taken her antidepressant, for example.
• 33:22
  Um, and so on.
• 33:23
  And that's something that's really exciting.
• 33:25
  At the other end, on the dashboard side, um, a feature that we've introduced is how to create easy read letters.
• 33:31
  I remember a learning disability nurse telling me that it takes her between one and two hours to create an easy read letter 'cause she's gotta find all the images and get the right, uh, language and create separate sentences.
• 33:42
  Now you can do that in 1.3
• 33:44
  seconds by clicking a button and it'll create the right image and the sentence, and you can even set the tone as well, um, where you can have a professional tone, happy tone, or a serious tone if it's sad news.
• 33:56
  And that's another feature that we're, we're really excited to bring.
• 33:59
  So the possibilities are endless and I can go on and on about other AI features.
• 34:04
  So that's something that we're really looking to develop over the next 12 to 18 months.
• 34:07
  That's amazing.
• 34:08
  And I the bit, you know, what does Paracetamal do or what, what is, or what does that mean? But I think the bit that I'm really interested is as well is you spoke about, I'm going to see the doctor today and I'm feeling nervous, or I'm, you know, so that bit where they're actually asking almost not just what something it is, but they're asking for advice.
• 34:27
  Yeah.
• 34:27
  So what we've done is in such a way, is that.
• 34:30
  It can give general advice.
• 34:32
  So I'm going to the doctors for a blood test and what is a blood test? So what, why do I need a blood test? And what Kiki does is just explain in general what we want to do.
• 34:43
  And then the phase one, what we want to do in future is that once we connect to their medical records in future, um, is to give a bit more information.
• 34:51
  So, or we notice that you're feeling very tired and they say, okay, what is anemia? Or they might even enter that, what is this? They just tap on it and it explains in easy language what it is.
• 35:02
  So gradually we want to feed more and more information, but at the moment it's more generalized information about, you know, what a, what happens in a, in an annual health check.
• 35:11
  What Kiki will do is give a summary as well.
• 35:13
  Um, uh, you know what? What, what are the side effects of this medicine? For example, if a carer is asking that question, they can give simple side effects.
• 35:22
  So we're slowly introducing it.
• 35:23
  We're very cautious.
• 35:24
  'cause we know with ai you just have to be very careful and we're constantly testing it.
• 35:29
  But we do want to get to a stage where.
• 35:32
  If there are blood tests connected into the app, they can get an easier understanding because I've noticed, for example, someone with the lean disability came to me once and he said, uh, Navid, look, this is my blood sugars.
• 35:43
  My doctor told me these are my blood sugars.
• 35:44
  And between you and me, it was his hba one C levels.
• 35:49
  And he just wanted to know, am I doing well? Am I not? That's it.
• 35:53
  And I said, what if again, what if AI could just simplify it and say, look, you're doing really well.
• 35:58
  It was this number last time.
• 36:00
  It's gone down.
• 36:01
  Well done.
• 36:02
  Keep going.
• 36:03
  You're just getting more and more information to that patient.
• 36:06
  Um, from that point perspective.
• 36:08
  So that's something I would really like to work on.
• 36:10
  I mean, it sounds so exciting and I can imagine there's this bit in you that's sort of like, I just wanna get all of this done now.
• 36:15
  You know? 'cause there's so much isn't there? That's, that's potential.
• 36:18
  But at the same time, by doing it slowly, you are sense checking everything all the time, which is the bit that makes sure it's right and make sure that it's working.
• 36:27
  So I just want to ask.
• 36:28
  And I think probably there's lots of people on listening that are thinking, do you know what I could do with somebody like this, Kiki? 'cause I'm going to the hospital, I'm not sure what this is that's being done and I keep forgetting, take my medications and things like that.
• 36:40
  So is this, I mean, I think probably the answer's yes, but is this transferable and is this something that you are looking to transfer to other areas or is this purely the moment that you're working through learning disability? Or people with low disability and autistic people, or is it something that could perhaps be used wider on a wider sense, particularly as we are starting, I suppose I'm thinking about that we are moving into, um, you know, community care that you've spoken about as well, where people are in their own homes and there's lots of AI things going on.
• 37:13
  Might not look the same, but um, yeah.
• 37:15
  Is this transferable? Is there uses elsewhere and have you thought about them? Yeah, I mean, there's a saying at Mencap if you can get it right for, you know, looking after people with disabilities, you'll help lots of other groups as well.
• 37:26
  And it's absolutely true.
• 37:27
  So for example.
• 37:29
  Uh, we've introduced, um, medi for people with brain injuries, traumatic brain injuries, um, and they said that one of the features that they like is that, is connecting different family members to give their account as well from there.
• 37:42
  So, um, another area that we've been asked to introduce this is in, uh, is in dementia or elderly care because the simplicity of the design, um, from that, again, I've gotta say that that was, I didn't expect that, but, 'cause I thought there's enough tech out there for, for older people.
• 37:57
  But they said that the simplicity is really good, especially with the reminders and the ease of use and so, uh, ease of use.
• 38:02
  So absolutely.
• 38:04
  Um, and, and we're also introducing it for people with A DHD, other more neurodivergent groups as well, um, ethnic minorities.
• 38:12
  Um, I'm from an ethnic minority background and I test the app with, uh, with people from that background and they said it's a lot easier 'cause of the images that we use and the simple language we use.
• 38:22
  And so again, that's an encouraging area aspect for us.
• 38:25
  Um.
• 38:26
  And, uh, when we were in the Middle East, the one of the pediatricians said that this app can be used for all our pediatric populations, um, because you've kept it very simple.
• 38:36
  So it's not just learning disabilities.
• 38:38
  What about other areas? Yes, we cover some rare diseases as well.
• 38:42
  What if it was just for asthma for a child? Can I give it to someone with just that no learning disability? And we said, absolutely we could do that because we are training the, the young child at an early age to monitor their peak flow and so on.
• 38:54
  So it has scope.
• 38:55
  It has scope and it's, it's going to expand.
• 38:58
  I do, I do sense it from their, just purely because of the simplicity and, and that's helped a lot.
• 39:03
  There was an element of fear that it's too simple.
• 39:06
  And a lot of people said, you know, you've made it so simple, are, are they gonna use it? But we've realized the simple, the des the design, the, the more usage we get outta out of it.
• 39:15
  So we just kept with that.
• 39:17
  That's fascination.
• 39:18
  I was thinking to myself while you were talking, and I know that last time that we spoke, in my mind I'm thinking, wow, this must be applicable in so many settings.
• 39:26
  Um, and usable.
• 39:28
  So it's incredible and I think.
• 39:30
  As there are different AI things coming up, actually that learning from each other and learning about the different ones that there are, I think is really important.
• 39:37
  And starting to think, you know, actually yeah, this can be used for so many people.
• 39:42
  Um, I think what I'd just like to go into now, 'cause we've discussed quite a lot of this and I think it's in incredible and fascinating, I could talk to you about it for ages, but you have touched on this as we've gone through, um, is what is it that's really allowed you.
• 39:58
  To do this and get it right now, obviously it's your passion and drive.
• 40:02
  Absolutely.
• 40:03
  At the beginning you had a vision, you had an idea, and when people said no, you didn't stop.
• 40:08
  But there are other things and you've mentioned I'll mention them just so you've got those, but it'd be really nice to sort of build on it.
• 40:15
  One was around that co-production, what did that look like? Um, and one was around sort of having the team around you.
• 40:22
  So is there anything else that really made this happen? Um.
• 40:26
  And really brought it to life because obviously, you know, you needed people on board to do this with you.
• 40:32
  You had the drive to do it, but what did it actually look like when you got those people on board and helping and supporting you? Absolutely.
• 40:38
  So when we, so this all started, remember there was CCGs, clinical commissioning groups, and that's when I, uh, the medical director.
• 40:47
  When he, we talked about learning disabilities and he was, he was our champion.
• 40:51
  So I remember being in a, a, a meeting and it was quite brutal.
• 40:53
  And I can understand why the gps were saying, look, this is not an area that we need to spend money on this.
• 40:58
  We, you know, we we're drowning here and so on, but that medical director made sure it happens.
• 41:02
  So we got a bit of funding there and I remember reaching out to one, um.
• 41:07
  It's a self-advocacy group.
• 41:08
  Uh, introducing myself.
• 41:10
  Hi, I'm a gp.
• 41:10
  I'd like to visit you if that's okay.
• 41:12
  Um, because I'm thinking of building an app and I remember that very first meeting.
• 41:17
  It was very passionate and about 50% of it was how doctors are getting it wrong.
• 41:22
  And I had to go through that, listen to that, build that trust, and I said, look, I'd like to co-produce something together because I can't just build an app on my own and I'll be making assumptions.
• 41:31
  And they said, yep, let's get a group of people together.
• 41:34
  Um, our members, uh, with lived experience and I, I, I re remember the very first day they were sat in a circle and I went there and it was very quiet and my voice was shaking because I, I was outside my comfort zone and I had some pictures.
• 41:48
  Of what an app could look like on my iPad.
• 41:51
  And I said, hi, I am a doctor and this and that, and really nice to meet you.
• 41:55
  What's your name? What's your name? Really nice to meet you.
• 41:57
  And I remember showing them the designs and they all started talking.
• 42:01
  At first, they were all quiet.
• 42:03
  And they also started giving their opinion, oh, I like that.
• 42:05
  I don't like that color.
• 42:06
  I like this.
• 42:08
  And then I put the iPad down.
• 42:09
  I said, tell me when you go to the doctor, what, what do you worry about the most? And one said, oh, I can't describe my pain, for example, I can't describe where it hurts.
• 42:18
  Or A doctor didn't tell me when I need to have an injection.
• 42:22
  Um, or a jab.
• 42:23
  Should, should I say.
• 42:25
  I remember that very first session.
• 42:26
  There was like, almost like information overload.
• 42:28
  I thought, gosh, there is so much going on.
• 42:31
  But before that meeting, I was observ doubts, is this the right thing to do? But after that, I was certain, I said, this is gonna be my next, um, project, uh, of life as a gp.
• 42:41
  And then as time went on, um, I met gps who have children with learning disabilities.
• 42:47
  I'll never forget.
• 42:48
  Um, there was one GP in near Cumbria and, and she has a daughter with a learning disability.
• 42:54
  And I remember her really kind words and she said, you need to meet this one nurse, and she's full of energy.
• 42:59
  And that nurse, if you're listening, you know who you are.
• 43:02
  Um, and the rest is history.
• 43:04
  She said, nave, this is brilliant.
• 43:06
  Let's do it.
• 43:07
  And or more nurses got involved, then I had to find the right software engineers.
• 43:11
  And you go through different engineers, think who's, who's got the right passion.
• 43:15
  Um.
• 43:16
  Spoke to designers and then there was the funding aspect of it as well.
• 43:19
  So you've gotta find champions.
• 43:21
  And I remember Lancaster, ICB, there were one or two people who were just amazing.
• 43:24
  Uh, they said, keep going, we'll support you.
• 43:27
  And then somebody from NHS England, uh, two people from NHS England contacted me as well.
• 43:32
  'cause we thought this is gonna be over now in this project finishes.
• 43:36
  And I'll never forget that meeting.
• 43:38
  They, in the morning, they said there's no funding.
• 43:40
  And at three in the afternoon they said, can you quickly call us? We've found you some funding.
• 43:44
  And that was just amazing.
• 43:45
  And as soon as I got that news, told my little team of two and I said, we're, we're back online.
• 43:52
  And bit by bit there was constantly somebody coming up to help us.
• 43:56
  Um, another ICB reached out and I remember on social media, I used to talk about this on Twitter, that we need to do this, we need to do that.
• 44:03
  And there were commissioners on there as well, watching my, you know, reading my tweets.
• 44:08
  And so we got into dms and he said, can you, can you introduce this to the black country? I want to know what's going on.
• 44:14
  And bit by bit people started, um, supporting it.
• 44:17
  And so it, the, the momentum grew, the movement grew, should I say.
• 44:22
  And uh, and here we are.
• 44:24
  And I think the bit that you've really said there that came through quite strongly was the fact that actually that first medical.
• 44:32
  Was it medical lead in the, in the clinical commissioning group.
• 44:36
  He came on.
• 44:37
  You got that person on board.
• 44:39
  That's, you know, somebody that's got a bit of clout, they'll say.
• 44:43
  And actually from there, the conversations that you had by constantly having conversations with the people that was about, and it would really matter to, and make the difference to you to keep it real.
• 44:53
  Um, and keep that understanding and everything that you were taking away from them and thinking, yeah, actually this is worthwhile, what I'm doing is right.
• 45:00
  Meant that you felt.
• 45:02
  That this was important and you were able to give that passion over probably through your tweets and through all that social media stuff that people think, well, why did we do it? But actually it is just to get people on board quite often, isn't it to understand? And you managed to get funding when you least expected it.
• 45:19
  So there's something about that.
• 45:20
  And then you spoke about your team and you said you're a small team of two, but I think that team's probably grown now.
• 45:26
  It has, it has grown slowly.
• 45:27
  Um, and you see a lot of people are helping me without any, any, you know, request for compensation.
• 45:34
  They just want to say, right, let's, let's build something.
• 45:36
  This is something unique here.
• 45:38
  Um, so we're, there's about 10 of us.
• 45:41
  Um, you know, we've got, I've got psychiatrists advising me constantly.
• 45:45
  I've got, um, learning disability nurses, um.
• 45:48
  Individual allied professionals, people with lived experience.
• 45:52
  We've got our own WhatsApp group, so everyone's coming together now and, and, and that's the, that, that's the best part.
• 45:58
  You see, I started working, as I was saying, I worked in a e and I wasn't really making a difference.
• 46:03
  Yes, you see your heart attack and you save one life, but we were not saving.
• 46:07
  10 others that came through, you know, and I said, I want to work in primary care, but when I was working in primary care, I just, yes, it's good, it's rewarding, but I wasn't really preventing as much.
• 46:18
  And I said, let's go further into the community.
• 46:20
  Let's see what's going on out there.
• 46:22
  And I.
• 46:24
  GV practice is, is brilliant.
• 46:26
  You've got your own little world there, but when you're out in the community, it's completely different.
• 46:31
  Um, and it's addictive Once you're out there, once you start talking to people, and that's where we need to start building, is finding the true pain points before they get sick.
• 46:42
  And, uh, so yeah, it's, it's been quite fascinating.
• 46:45
  Uh, but it's those little moments.
• 46:47
  Where you meet people with lived experience, the family's exasperated, you think, gosh, I've gotta continue this.
• 46:52
  Let's keep going until the end.
• 46:54
  And I've gotta say, financially it was very difficult.
• 46:57
  I, I didn't pay myself for one and a half years and my accountant was about to give up.
• 47:02
  He said, look, are you sure you want to continue this? And, uh, I said, yeah, let's just keep going till the end.
• 47:07
  Yeah.
• 47:07
  I think these things, when you really want things to, to work you, you just that drive and passion, isn't it? So, um, and it just shows how dedicated you, you are and, and were back then to doing this and, and making it work that you just continue to invest your time in this.
• 47:25
  So, yeah.
• 47:26
  Thank you that you are doing that.
• 47:28
  Um, so you've talked about lots of things there and, and talking about people and how we can improve their health and support them to prevent them from becoming ill.
• 47:38
  And Absolutely.
• 47:38
  I've worked in general practice and I think that was one of my frustrations, actually, prevention.
• 47:44
  But one of the discussions that I've had, um, on here, um.
• 47:49
  Was around actually the creation of health and the focusing on creating health and wellness rather than focusing on prevention of illness.
• 47:59
  And I feel like what you've been talking about with this app is actually you are supporting people to create their own health and wellbeing.
• 48:08
  What is it that matters to them? What's important to them? They can put in what they're doing, who their people are.
• 48:13
  The people are that.
• 48:14
  Are important to them, whether they're carers or family, all of that's in there.
• 48:18
  And then actually they're working to create their own health, right? And we are supporting them to create health rather than thinking about prevention in that traditional way.
• 48:29
  And, um, I know that probably a roundabout way of thinking, but uh, it is something I've thought about a lot since I had that conversation.
• 48:35
  Yeah, I mean.
• 48:36
  You see, the pandemic was quite revealing.
• 48:39
  Um, to, to give you a, now this is gonna be a curve ball, what I'm gonna say to you, but there's a, there's a reason why during the pandemic, I created a TikTok account and it was just for a joke.
• 48:48
  And I said, let me just put out a TikTok video about COVID.
• 48:52
  And I woke up the next morning and I had 2.1
• 48:55
  million views.
• 48:56
  And it, it made me realize that people are hungry for information when there's fear, when there's lack of, there's lack of certainty.
• 49:04
  People want to know, and I produce a few more videos and it reached 22 million views of from those videos.
• 49:10
  And that made me realize, well, well, it kind of furthers.
• 49:15
  Cemented.
• 49:15
  What I was thinking was that people have got their lives to live, you know, out of home.
• 49:20
  They want to carry in with their daily lives, and health is often an afterthought.
• 49:23
  When you're sick, that's when you're going to see the doctor and what can you embed within your routine that will make you.
• 49:31
  Happy carry on what you're doing, not impede with your world.
• 49:35
  But at the same time, there's a prevention agenda in the background because if you, if you sell prevention to people, there's not much interest.
• 49:42
  It's like saying, do you want to sell a painkiller or do you want to sell a vitamin? And it's often the painkiller that's more popular than the vitamin because you know it's very few will take the vitamin.
• 49:53
  But what you need to do is start embedding it within people's lives.
• 49:57
  Um, and with that, what what I've noticed is that people want information, knowledge.
• 50:01
  People are taking more and more interest in their wellbeing, in their skin, in their body.
• 50:06
  Um, what's going to make me better? What's going to make me happier, for example? And I think that's how we need to approach it.
• 50:14
  To give you an example of nutrition, so we talk about obesity, and that's in, there's a national campaign on reducing obesity.
• 50:20
  If we go around and tell people, look, you must eat, uh.
• 50:23
  Less carbs and more protein and so on, people are less likely to do it.
• 50:27
  But if you want to send an image of how can you make, uh, nutrition fun and how, and just present it as where you are, they are your partners where you, the person has got triggered that thought, but you are helping them with extra knowledge rather than giving instructions.
• 50:44
  People will follow it.
• 50:46
  Um, I hope that that makes sense.
• 50:48
  So that's what we want to do is we want to introduce something in the community that's.
• 50:54
  Triggered by the individual, the, the curiosity, um, what, what's going on with this? What, what does this medicine do? What should, what, what will this food do? And then you supplement that with your, with more information.
• 51:06
  'cause people will take that information and they are asking for information.
• 51:09
  Um, and that's something that we just have to be there to provide it.
• 51:13
  Thank you.
• 51:14
  I think that's absolutely fascinating, that making it fun and the fact that people do want more knowledge.
• 51:20
  And as you rightly.
• 51:21
  Through this constantly champion was actually people with learned disabilities.
• 51:26
  Um, autistic people, they want more knowledge.
• 51:28
  They want the more support, they want more ownership of their own health.
• 51:32
  And you've created a forum for them to be able to do that.
• 51:36
  Definitely.
• 51:37
  And I, I, I just sometimes feel.
• 51:39
  Um, we sometimes go too far.
• 51:41
  We don't have enough trust in people with learning disabilities.
• 51:44
  You know, we want them to have jobs and we, you know, want them to have families and relationships, but I sometimes think there's too much fear and it doesn't really give them that independence that they really want.
• 51:54
  And we know that if the more independence you give someone, the better the health outcomes.
• 51:59
  So we just have to have that trust now.
• 52:01
  Um, and I can understand why there were apprehensions at first or don't.
• 52:04
  Introduce an app for learning disabilities, it's too much.
• 52:06
  And why are you doing this? But as you slowly start introducing it, it, you actually, I'm, I'll be honest, I was surprised as well, especially for example, when someone tells me about their blood sugar reading someone with a learning disability saying, look at my blood sugar readings.
• 52:19
  Look, they, they're getting better on there.
• 52:21
  Um, you know, uh, that's not my medicine, that's not my epilepsy medicine.
• 52:26
  This is my epilepsy medicine.
• 52:27
  And they recognize the names and so on.
• 52:29
  We can use that as a hook and build on that, on that information.
• 52:33
  And the best part is if we do that earlier in life, um, in that, that, you know, when they're, when they're in schools, we can then continue with them on that journey.
• 52:43
  Adding more information, um, slowly in, in bite size.
• 52:47
  And, uh, it's, it's a good investment for the future, I think.
• 52:50
  Absolutely.
• 52:51
  So I'm just gonna ask you Nave, and I'm aware of time and I've could chat to, you got so many more questions to ask you, but what, um, what would you like to.
• 53:00
  People take away as a part passing message or what do you want people to, you know, is there a call to action? Is there a message or something you want people to always think about? I think we've, we've arrived at a very good point within the, uh, healthcare system, which is this transition of care into the community.
• 53:18
  This is something that we started before the announcement of the 10 year plan, so we're really excited.
• 53:23
  I just ask every system.
• 53:25
  This is a, a message to every healthcare system is to keep talking to the VCSE sector, to the community groups.
• 53:32
  Um, they are are going to be our most powerful allies, um, in this, in this battle because yes, waiting times are, are rising.
• 53:40
  And although they might be improving and with getting sicker and sicker as a society, the sick care has, has reached its limits.
• 53:48
  And I just say that you've got a powerful resource of.
• 53:51
  Families and, and VCSE sector, the community and bring them into the fold.
• 53:57
  And also introduce technology.
• 53:58
  Do not be afraid of technology.
• 54:01
  There's a lot, sometimes understandable.
• 54:02
  Fear is to, is to really push it out and find new, new ways of working.
• 54:08
  Um.
• 54:09
  Experiment, keep experimenting.
• 54:11
  There's often a risk, uh, reduced risk appetite again because of, for many reasons, but I'd say really work with the community.
• 54:19
  Introduce digital.
• 54:20
  Don't be fearful of ai.
• 54:22
  Go out there.
• 54:23
  And I really think that we have to do something, um, because as a nation, yes, we've, we've, we've rinsed the medical model.
• 54:31
  Um, we now need to look at.
• 54:33
  The social model.
• 54:34
  And I think this is a unique opportunity and, and let's, let's continue with it.
• 54:38
  Thank you so much and I'm gonna end on that note because, um, I think the points that you've given there are so powerful.
• 54:44
  So thank you so much for joining me today, Neve.
• 54:47
  It's been an absolute pleasure.
• 54:49
  Um, and I delight and I'm so pleased 'cause as I say, it's taken quite some time before this has, um, come to fruition.
• 54:56
  So thanks for your time today.
• 54:57
  You're most welcome.
• 54:58
  I really enjoyed it.
• 54:59
  Thank you for having me.
• 55:00
  Thank you.
• 55:02
  I hope you found this episode interesting and inspiring.
• 55:05
  If today's conversation has stirred something within you, please share it together.
• 55:11
  Let's build the ripple that we need to create change.
• 55:15
  And if you haven't yet, please follow the show and leave a rating.
• 55:18
  You can also find on my link tree a link to my feedback form where you can share your questions, ideas, and reflections, and talk about what you'd like to hear on this podcast in the future and what matters to you.
• 55:31
  Together.
• 55:32
  Let's shape a space into something reflective and purposeful.
• 55:37
  So for now, stay caring, stay connected, and stay curious.
• 55:43
  Hi, it's Ruthie.
• 55:44
  I just want to say I hope you enjoyed that episode.
• 55:47
  I hope you enjoyed that little twist at the end of going from supporting people when they're unwell to actually that health creation.
• 55:56
  I hope that, like me, you were really fascinated by about Kiki and how he hatched and came out from the V'S.
• 56:04
  Passion and is now supporting so many people.
• 56:08
  So thank you so much for joining.