 Good afternoon and welcome to committee room one. I'd like to welcome everyone to the Scottish Parliament. I'm Pauline McNeill and I'm the convener of the cross-party group on inflammatory bowel disease, a group that we started seven years ago. I'm delighted to see that we've given the issue quite a high profile in the Parliament. I'd like to welcome you to the Festival of Politics 2023. It's certainly my first one, so I'm looking forward to it. This year's event celebrates many things. One of the things that we're going to be talking about this afternoon is that the festival has been going for 19 years, believe it or not. That surprises me. I'm really delighted for you who chose to come here to discuss the language of poo. Was it my idea to come up with it? I thought it was a great title to attack people to a meeting that is going to be really, really great. I want to introduce the amazing panel to you. To my immediate left is Burjur Borsak, who's head of policy and campaigns at Clones and Colitis UK. We've been working together for many years now on that very important work. The next to Burjur is Professor Jason Leitch, clinical director for the Scottish Government and probably well known to you. Finally, I'm delighted to welcome in person, because up to today, Josephine is joining us online. It's great to have Dr Josephine Adacola, who is a lecturer in strategy, communication, science and technology at the University of Glasgow. This is our fantastic panel. Just to set the scene for you, this is an opportunity for members of the audience to put questions to the panel. In fact, it gives some views if you do have some. I'd like to start by asking Burjur Borsak if he can tell us a little bit of the language of poo research and why he's finding these questions about public health messaging turning off some of our communities. Thank you so much, Pauline. I would like to start with a bit of a public poll. Obviously, we have you are here, so you're not that uncomfortable. I take it, talking about or hearing other people talk about poo. So could I see a raise of hands who would be comfortable talking about poo to their family or friends? That's fantastic. Well, so the research we have done is we have spoken to 400 people across the UK about how they talk about their bowels, because it's still a taboo subject we find. People feel quite uncomfortable talking to their friends and family to such an extent that about a third of people living in Scotland told us that they wouldn't go and see a GP if they were experiencing diarrhea, stomach pain and blood in poo, which are the warning signs of inflammatory bowel disease, the cross-batter group that Pauline chairs. This is a big public health issue if people aren't coming forward with these symptoms because Crohn's and colitis, so the inflammatory bowel disease, affects the lining of your guts from anywhere, actually, from your mouth to the anus throughout the digestive tract, really red swollen inflamed spots across that digestive tract. And sometimes you have, you know, abscessors, you have lumps that are really painful and the disease progresses quite rapidly if it's not treated. So the sooner people go and the sooner they are diagnosed, the better outcomes they have. So this is why we commissioned this piece of work and we started to talk to people across the UK about the main symptoms, so it's essentially about poo. And we wanted to understand how comfortable they feel, how uncomfortable they feel when they, in different sort of social situations, so talking to their loved ones, families, talking to their work, talking to their doctors, and even searching online. And really interestingly we found about one in ten people wouldn't even be able to Google it. They wouldn't even be able to Google diarrhea because they would feel really anxious about it. They also said about sort of one in ten people wouldn't, you know, tell their friends that they are having, you know, trouble with their bowels. And so this research is showing us that, you know, we are feeling awkward and it is actually stopping us from, you know, getting the help that we need from the health service. It is also stopping us from getting the help that we might need from our friends and family. And of course if you have a chronic condition like Crohn's and Colitis and experiencing, you know, diarrhea, for example, on a regular basis, it is actually stopping people getting help from their employers, asking for reasonable adjustments at work. So that's the language of poo. Thank you very much. So Professor Leitch, I imagine— Jason. Jason. I'm not your mother, so I'll call you Jason. Jason and you have had many years in the pandemic, you know, reading and messaging, and so I guess we've got lots of lessons learned in that. So would you like to address that question? Hi. Hello everybody. Thank you for inviting me. It's nice to see you all. If you're Scottish or lived in Scotland, I'm afraid my voice is probably overly familiar. If you're not from Scotland, you'll have no idea who I am, so we should maybe just cover that. I was the guy on the tele and the radio who spoke to the population about Covid more than anybody else. There were other people who did it as well, of course, many of whom were better than me at it, but I was the translator of the science and the knowledge and the decisions that the politicians made in this building, often, to the public and to the stakeholder groups. So there was a lot of learning in there. There was learning about language. There was learning about route of how you get that conversation to the people who need it, because in fact, I was asked in this room, I was asked by an MSP who was about my age in his 50s, and he said, it's absolutely outrageous. You're not speaking to the teenagers enough. And I said, how would you know? Because he doesn't get his news the way the teenagers, the teenagers don't watch in the main linear TV anymore, they just simply don't watch it. So there isn't reporting Scotland or the BBC news or that's not the way to get to vast swathes of the population. So we learned a lot about routes, some of which we learned from Josephine actually, who helped us with some demographics and her research helped us work out how to do some of that. But the language was also important because if we went too scientific, I couldn't understand it for one thing, so I had to make it understandable for me in order to translate it onwards. And we ended up with, remember, this disease didn't have a name at the beginning, Covid. We didn't know what it was called, we didn't know what the virus was called, we didn't know what the symptoms were, so we were making it up in real time. The science was happening in real time and we learned a lot about trying to communicate with the population. There's some crucial differences between the conversation with the pushers trying to have and we had an emergency, so people cared. So the BBC, we could ask to go on TV and they said yes, you can't usually do that, you can't usually phone up the BBC and say we need to come on because we need to tell people something. So that happened for months and months, the public service broadcasters on all the channels were really, really gracious and helpful, I think. It's harder for, let's call it, and it's just a summary, let's call it chronic disease or chronic ill health, chronic public health challenges that everybody knows about, where there isn't an emergency, where the lights aren't flashing, where it's not the single subject of conversation in homes all over the country. So Covid was special in public health terms, but I think there are lessons in there that we can learn about how to deal with different communities, how to speak to people in a language that they can understand, how to use multiple versions, so we did a lot of social media, we did a lot of TV, we did a lot of radio. I mean if you told me three years ago I'd be on the Radio Clyde chart show talking about public health, I mean that's ridiculous. Or off the ball. So people in this room maybe don't, off the ball is the most listened to radio show in Scotland, it's a football, comedy, phone-in, stupid, it's fantastic. 500,000 people, a tenth of the population listen to off the ball, don't tell them because they'll get, their heads will get big, but it's a fantastic show and we did it every week for 18 months and we took questions from the audience, they told Joe, it was just a way of getting to a population that don't listen to radio 4 in the main or watch Channel 4 news, but we also had to do radio 4 on Channel 4 news, so you have to do all of it and keep repeating, repeating, repeating the messaging and then you have to use language that people can understand and relate to and you want the families and schools and care homes and everybody else to talk about the thing that you're trying to protect them from, so that's where the similarities cross I think. Can I ask you, having gone through that, is there anything that you would do differently in the way in which, so you use lots of mediums and you see lots of different programmes, you wouldn't expect to be on, but would you do it a different way in the way you explained it to people? I think we might have done some of the things we did later quicker, so we split the messaging a little bit later on when we began, remember we were running so fast that it was happening so quickly that we went from discovery to lockdown in a matter of weeks, I mean there wasn't a lot of time to think about it, people in hindsight now think there was months, there really wasn't and when we now know that a vaccine was coming, but at the time we didn't know a vaccine was coming, in fact the scientists had told us that a vaccine wouldn't come, that was the consensus view that you wouldn't get a vaccine, so the communication has to change and one of the challenges with communicating public health is that the public don't really like it when the message changes fast, it's really hard to get that over, so one minute we're saying you can have big events of 100,000 people, at midnight you can't, well what happened at midnight, well that's weird, so that's really hard to communicate, but there has to be a moment where you say Christmas is cancelled, now unfortunately I said that in October and got a kick in for it and it was the Grinch on the front of the paper, so October was maybe a little bit early to cancel Christmas, but eventually cancelling Christmas was, well you can't cancel Christmas actually, you can only cancel the family gatherings of Christmas, only Jesus can cancel Christmas actually Christmas, so I think there's a timing thing about how we did stuff, but I think we got most of that as right as we could get it in the chaos of what we were going through. You now know that you've just said that only Jesus can cancel because it's going to become a message in itself. So, Josephine, you're obviously really involved, I didn't know this when I heard you come to speak, so would you like to talk about how health message is reducing inequalities or anything you want to see about your experiences working with Jason? Thank you so much for having me, it's a pleasure to meet everybody here. So just to tell you a little bit of my research, so I began to research Covid-19 vaccine engagement following the news that some communities, specifically the African Caribbean and black communities, were in taking up the vaccines and I was quite interested to understand why that was the case because nobody was researching into it and that's why we're here, we are academics, I'm a member of the community and I was curious to know. So I did three series of research to try to find out the reasons why people were taking it and the general broad teams were around issues of misinformation and disinformation with the social media making it even more impossible to descend what is the correct information, what is the wrong information, so that was pretty much a challenge. Within the community there were a lot of conspiracies, from religious conspiracies to conspiracies around lab rats, from historical or ethical practices from the past and WhatsApp wasn't very helpful, it was a mainstream group which those conspiracies were effectively communicated from one community to the other, there were a lot of fake news and people were resharing it without even asking questions or putting a label to say that this was fake news, so people were receiving this disinformation, misinformation, fake news conspiracies and it was shaping how people were receiving the kind of information that Jason was sharing with the public. There was also a lot of issues around distrust and distrust, one of them emanated from the fact that the science itself was changing. You know there was see Jason this today talking about something and the next day is changing and they were wondering oh god does he know what he's talking about you know what is he saying you know so the so they change the emergence of the of COVID and the messaging itself was a problem. Now in the thought study one of the things that was really surprising was the fact that people disengagement with the messaging was linked to issues around discriminatory practices and racism and you know and one of the key lessons from there is that when we speak or when we communicate public health messages the people are more interested in the structural context of that message so who is saying this why are they saying it and they're speaking to me and why should I listen to them can I trust them you know people's perception of systems not just health systems so for instance immigration I find a lady telling me that she's been mistreated by the immigration system and the immigration system the way she's been treated over the last decade meant that she could have died so why should public health be interested whether she took vaccine or not you know what if she died I mean so she couldn't reconcile a system that has treated her so badly wanting her to take vaccine wanting to save her so that she felt there was an underlying issue there you know you wanted me to die because you curtailed my right to walk because I had an issue with immigration so why are you interested in me taking the vaccine anyway so people's perceptions of systems not just the healthcare system immigration system the education system the housing system all the social determinants of health were crucial in shaping perception from the health system themselves and how people received those messages so there are a lot of structural issues that shapes what has been said and just to round up on this question I would say that people don't really care what you're saying until they know that you care for them that's an amazing message actually listen to you ever think about it like that but it is so true and in my capacity as a politician I'm really very passionate about the systems in a way that people are treated in the asylum system and never thought of that but why would they then trust the same administration to keep them safe that's amazing well you've heard three amazing panellists here and the purpose of being here is that you get the chance to ask any questions or make some comments yourself so we've got some roving mics if anyone would like to just indicate and yes I thought you having a good laugh on okay the idea of Jesus is the only one who cancels christmas she said you're the second coming arriving on christmas day and Jesus being like is over just just really made me laugh isn't it right um my question is is very simple because I from what I've seen from previous things so mental health used to have an enormous stigma and then everyone talked about it and it's okay to not be okay and depression affects one in six adults and menopause used to have a bit of a stigma whereas now you can go into boots and there's literally like menopause and wellbeing right above the product so is it worth having a campaign that just has like poo diarrhea on big billboards and will that be enough to take the initial shock off of it thank you we actually started the campaign called cut the crap if that helps um in november last year and and the reason we i mean called it because it's a bit of a pun um to be honest but also we heard that people were making up a lot of excuses not to you know uh not not to see a gp like oh it's just a bit of um you know sort of tummy funny tummy um i've heard from one person who said um i'm probably the worst cook ever in the world because i keep getting this like food poisoning every weekend um no no it's actually a chronic condition another person practically lived on hurry bows and brand flakes not endorsing in brands um for for 18 months before they went to see their gp because you know i'll just try to manage and i think kind of in the kind of british culture we are quite sort of i'll manage i won't make a fuss i won't waste the doctor's time um so so that's why we are calling it you know cut the crap check your symptoms um uh and um and you know go go speak to someone um but these are quite sort of resource intensive um campaigns as you can imagine and um as jason was saying you know we don't necessarily have the kind of the air time um on my covid which was you know real kind of happening public health emergency that affects everyone at at all times um i think one more if i can add one more thing obviously you know uh the the cut the crap campaign is about reaching young people in particular because we wanted we found um that young people are the are more likely than any other group uh to uh to go see a gp because you know find me i in our sort of 18 20 you know when we are 18 20 we think we are indispensable nothing can ever bad can ever happen to us um so we wanted to kind of dispel that myth but obviously you know it's a it's a mild swear word uh and it doesn't appeal to everyone so um one of the things that we know is um for example in scotland if you're black um you are twice less likely to be diagnosed with chrysyncholitis than than if you are white and we don't know why that is and we think part of that part of the reason might be because you know people simply don't get diagnosed because you know um it's not a prevalence of illness it's a prevalence of diagnosis so if we wanted to kind of uh you know level up uh people's health then we really need to make sure that you know that message public health message needs to um needs to say that uh to those communities that we are currently underserving we ran up we ran a detect cancer early campaign those in scotland will will remember it where we did lung cancer with alex ferguson we did breast cancer with elene c smith and then we had bowel cancer with the poo song which won all kinds of global awards because there was a comedian sitting on a toilet singing the poo song and it became it became a huge thing it was a really really good thing and bowel cancer screening went up so market marketing done properly engaging communities works it definitely works but it costs quite a lot of money so to get on the telly unless you're in an emergency to get on the telly costs money for your for your marketing even covid marketing costs costs money it doesn't cost the money to put me on the telly but it costs money to put the cartoons and the instructions on the telly so so it definitely works if you do it right and you're right it's got to be kind of not shocking but it's got to be memorable it's got to and there are people who do that one of the things i learned in this whirlwind of communication was there are experts in this science people there are people who do it so we've got experts in surgery and experts in bowel cancer and experts in Crohn's but there's also experts in how to communicate there's people who do that for a living it's a science so we use them we used behavioural scientists we used marketing experts in order to communicate with the public and the that breast cancer the lacy smith breast cancer one as well really helped with breast cancer screening rates really soared during that campaign so if you have resource and expertise you you can do it you're you're absolutely right i think it's important to to to acknowledge that pool is quite a sensitive topic you know it's good to have those campaigns but uh which would reach you know some people but they have those there are some people which it wouldn't work for so in that case we need to pay attention to who and where we talk about pool so for instance who who is telling you about pool or problems with pool is it your GP is it your mom is it your dad but more importantly those we care responsibilities need to know about uh pool and and to engage with the messages but there are also other structural issues which again i must mention there there are issues there are people who care more about their survival than any health issues so regardless of what you say how you say where you say it or through which medium they're not going to engage with it especially those on low income who can afford to be away from work because they need to feed their families their friends etc so for us to be for messages to be effective we need to be able to address those social determinants of health especially work and how people access to income and work for instance also it's important to say that some communities need more persuasion than others why some people just an ordinary message will make them do what is expected from that message there those who need a little bit more persuasion because perhaps maybe maybe going to the hospital is not really their first option you know for instance some people might want to pray first they might want to try natural therapy or they might not even trust the system or it could be discriminatory practices in healthcare your GP speaking to you anyhow and which is experiences of my community you know that some of them feel quite poly-treated when they go to GP so going to them you know might not be the first option so why the messages might be out there people actually taking action is is the most important and that's where the challenge is thank you anyone else want to ask a question yes it's not really a question but it's an observation about just how important it is for through this post following on what you've said about that the people who are in touch with others on a daily basis that these messages go right down to them I'm thinking for example of I mean the medical practice that I'm attached to when you speak when you listen to them on the phone and they're obviously trying to help people you know not to wait to go to see a GP because there are other services you can access directly but this the message on the phone tells you that if you need to see a muscular skeletal professional you can ring such and such a number well I mean who knows what a muscular skeletal professional is I mean to me it's a physio well exactly so I suppose what I'm really in a way flagging up is the need for this you you're talking about societal whole systems but within the health communication there needs to be a whole system response because again I mean there are so many people still many people who don't talk about the pharmacy they talk about going to the chemist so you know there needs to be an engine we need to ensure but particularly that those services that are closest to people on the ground that they understand these communication messages as well as the people on the platform here do because actually they're the people who are more likely to have an impact on the x thousands of people who are part of a GP practice for example and certainly not just my own experience but I mean talking to other people that's often quite a big gap really so it's how I suppose it's how the message that you're putting off putting over in public health actually goes into or goes down to the people who are closest to actual patients or members of the community I completely agree it's difficult and in their defence there's so many public health messages that were tracked so we send stuff I mean I send letters out all the time clinical director letters and it's a complete waste of time because nobody reads them and so there's so much information we're trying to get to those people so we need the broad society to help us it can't just be healthcare professionals it has to be everybody one of the things we learned and it corresponds with Josephine's experience and research is that you have to use community leaders in the communities to speak so a different community than Josephine references so the Polish community in Scotland is the most vaccine sceptic in the country well now I didn't know that before because Poland is very vaccine sceptical as a country Poland and Japan are the two most vaccine sceptical countries in the world now nobody really knows why they think it's a throwback world war two registration not trusting healthcare not trusting the system not trusting government thing but it doesn't matter what it is their vaccine sceptic so the Polish community get their news often from Polish radio not from English radio Scottish radio so I went on Polish radio now I never knew I was going to be on Polish radio a year ago so we went on Polish radio and the other thing we did is we used Polish community leaders to speak to Poles in the country both in their own language but also in a language even if English a language they could understand a way of being community in that environment so getting the messages that you're describing whether they're obesity messages or smoking messages or whatever those messages might be write down into those communities it's hard for government because I'm miles away from that and then you go to a country we've got five and a half million if you then go to my guys in England the people who are doing my kind of jobs in England I mean it's it's they're miles away from from the from the front so so they have to use those communities to try and get that messaging across and we need third sector organisations like Birchhouse and others to try and help us reach those communities just to add to that I think the NHS we have the NHS education for Scotland and one of the resources they are trying to develop which I'm looking to work with them is to develop some culturally competent training resources for first line staff like the GPs the doctors and training the nurses because they are the one engaging with the communities and they are the one making going to make the real impact within these communities so there is there's an acknowledgement that this resources or expertise is needed and effort has been made to to begin so we are quite still in the early stages and we're hoping that with time that would change and transform but like Jason say engaging with the communities is really crucial it's really hard because I do it in my job you know it's hard maintaining relationship that way also is really hard but we have the community organisations we have the faith groups we have different groups people who are trusted people who people rely upon when they're in trouble and and and they are all there willing to engage but most time they don't even know how to engage with authorities they don't know where to go they don't know how to go so I guess where we need to walk in is around building that partnership between agencies of government and communities and see how we can strengthen that relationship for public health Jason, when you were talking earlier about Newton and Wayne C Smith and for the screening issues is there any thoughts about screening messaging for men who seem to be particularly bad really it? Alex Ferguson was terrific so we used Alex Ferguson who's the most successful football manager in the world and in history probably and he did lung cancer for us so he did coughing he's got lung cancer stories in his family so he was he was very very helpful so yeah you've got to use the right communicator for for the right things so it's it's not always right that I so but another just another community in Covid the Gypsy Traveller community the Gypsy Traveller community weren't listening to me why would they listen to me I have no understanding of their culture they have little understanding of mine but we used the Gypsy Traveller leaders who I could help to then communicate with Gypsy Travellers I remember young scots young scots our youth organisation if you've got teenagers in your families you'll probably have young scot cards in your families and young scot wanted to do a thing with the first minister and I Nicholas the former first and I can't get used to that the former first minister and I way back at the beginning and they phoned me up and said will you come and do this thing and I said of course we'll come and answer questions and we'll talk and they said no no hold on hold on you're not designing it the young people are designing it they will tell you what to do I said okay I'll turn up and they can tell me what to do and that's what they did they so they had a panel of young people who there was about 12 of them very diverse from the whole of society they asked us questions they took the information from us they then went to the young people of scotland and shared those messages which we the scientists had managed to package up for them and then and then they did a q&a with the former first minister and I where the young folk would phone in and send video clips and social media not so so you've got to adapt to whatever that crowd happens to be and use the best communicators that you can and that's not always that's not always the same and the question just to expand on where we already are about language the point that came up a second ago was about chemists and pharmacy by our experiences that people want to use a common language therefore the professionals are foisting their version of what the language should be upon the public so if I'm at the doctor and I say poo they very quickly want to correct me and they want to say stall or bowel movement or you know that and I'm not just let me say poo you know my son is disabled and wears nappies nobody says nappies they all say pads I'm like it's okay we say nappies let's just use the word that we use because it's our family and we have to tell them about his movements which I take them out of constantly and we try and describe them because that's a human thing to do and they're going yes but what level is he on the thingy scale which regular people can never remember so they hand you out the pictures of the scale and you have to say what number it was and it's like stop making people conform to that one let's just be aware that everybody uses whatever language is comfortable for them. I think you are absolutely spot on and people want clear concise plain language like we talked to you know each other and like you are highlighting and I just cannot get my head around how you are being corrected when you know a doctor's office I think you know we really need to kind of you know use a common language and you know accept the kind of the way people are describing you know their poo. I've got so many little points in my back of my head going around that I can't remember any of them. You mentioned that one in ten wouldn't google diarrhea oh it has it a guess that one in ten probably couldn't spell it but I'm not sure that I would necessarily google it either because trust me I'm a doctor carry some weight but trust me I'm google probably doesn't and I'd be decidedly nervous about misinformation which begs a question for Josephine what can you do about misinformation. I mean it is so huge and so believable that the experts pale into insignificance almost. I mean I'm not around here Jason so I didn't see you on the telly but I dare say down in England we had exactly the same kind of scenario and the thing that turned me off more than anything else was the daff questions that the media put they're supposed to be intelligent questions that the vast populace were asking. It doesn't. None of that has gone. Can we have a straw poll on that one but what can you do about misinformation. Doesn't anybody any good. Well for my previous research and in one key message from a documentary I produced which Jason was fat was that misinformation can kill you know it can kill people there's no benefit to misinformation at all but combating misinformation in a social media aid is a big a big challenge but it doesn't mean that there's nothing that we can do. A lot of ESPAD has proposed different things and one of them is critical thinking there's when we need to arm ourselves our young people our children to be critical so we don't just accept information even if it's from our loved ones because that's where the the challenges if your mum tells you something you're likely to believe her even if she's wrong because on every day basis you believe her and she's always been correct but you know being critical about how we receive information from loved ones is very important asking them why how you know why you're saying this you know you don't usually misspeak but you know what's you know you're interrogating the information you receive is one of the ways in which you can combat information and that our schools have a critical role to play um our loved ones as well before you share information you need to be sure before you share because your loved one is going to believe you and they are right to believe you because they know you you love them and you care for them so you also need to be careful in how you share information like I say what's up is a serious culprit uh culprit in terms of misinformation and not just what's up all of them you know but you know from experience from my research you know misinformation is shared that way another way forward is around cognitive flexibility and that's what we all need to train ourselves you know this is this espat intervention in a way and one of the things that suggests you know someone who is cognitively inflexible is when they have a worldview they find it hard to shift from that worldview and that is really dangerous especially when they hold through a misinformation so one of the things one of the ways in which we can help ourselves is to try to be cognitively flexible and and I think there are some trainings that can help people to be better are being cognitively flexible but most importantly one of the things that allow misinformation to thrive is where there is correct information and where those with the correct information are untrusted if I don't trust the NHS and NHS is supposed to have the correct information how am I supposed to go there so again building trust with communities and building credibility especially by those in authority saying things I mean doing what you say you would do like we can see in the case of Boris Johnson you know it's really important you have to do what you're saying what you're saying you can't say this and do something else because it has implication on trust not only on you but also on the system and the government in which you run in or you're representing you are you're representing so I would say building trust beauty relationship making sure we have credibility as authorities is really crucial aside the other interventions that could be used at the individual levels but how do you get the message across that your message is the right message is the truthful message as opposed to everything else I can imagine that is very very difficult uh I don't know how you yeah I think within that like Jason say you know we need the experts in the room but all but having the expert there is not good enough you know people wouldn't listen to Jason from my community for example they may listen to him but doesn't mean it's going to change anything but if Jason want my community to act for instance then he needs to go to the pastor he needs to go to the imam he needs to go to the community leader then here we have someone who is an expert and someone who is trusted but also people are beginning to question why does he have to be Jason who is telling them what to do yeah why does he have to be him can I get someone that looks like me to speak and they will begin to talk about deep issues deep structural issues around inequalities how many people from minority ethnic communities for instance are in senior positions in terms of public health you know can I get so people want to see people that look like them people that trust saying that message so they're not just the second person feeding off someone who is an expert but they are the trusted ones and they also have the authority and the power to say that it's going to take time for us to get there but we can make progress it's even worse I'm afraid I'm gonna I'm afraid I'm gonna be more negative which uncharacteristic so it's even worse than that because the other thing we've got to stop so the misinformation is awful and I spend quite a lot of my time trying to fight against it the problem is when you fight against it you are attacked on a personal basis so scientists clinicians medics politicians others who do have the mainstream science and the mainstream science is the mainstream science it's not stationary the mainstream science but it but it if you say vaccines are safe and vaccines are saving the country that's mainstream science that that is considered the mainstream science and when you say that the vast majority of people are lovely and kind and nice and appreciate it and like the fact they can come for an appointment I did that this week because we announced our winter vaccination programme and social media called me Joseph Mengele so so I can take that I'm a big boy I've been doing it for a little while now so he called me Joseph Mengele if you like the science is still the science so this is still true but if I bring another voice in a new voice let's say from your community and they say it they're going to be immediately attacked so we have to we have to stop that somehow so that people will have the courage to speak up that can't just be a few of us who have become thick skinned on the train the other night going home just randomly mind them all in business a lady who had clearly been out for a night out comes up and starts shouting and bawling on the train about how I'd made her life a misery about then another guy comes up and says you're great he was even drunker and he was you're great you're and then they started they started arguing with each other and I'm like oh whoa whoa I was just sitting here reading my book and so so we've got to the disinformation is one thing but the voices that we use the mainstream voices that we use from whatever community we've got to protect them we've got to it's got to be safe for them to speak up I don't need to tell Pauline how difficult it is in the in the what will we call it the crucible of public discourse where where you get if you say something you are you're immediately attacked politicians get it worse than even than even the national clinical directors yeah and in the pandemic you had to think more carefully about what you would say because of the kind of communities were vulnerable and they'd never been through this before I mean it's a bit of public health messaging but I mean you'll remember this obviously just so much to remember so many layers and layers of things but I remember thinking when I am a singer myself so I felt I could say this and had a really interesting exchange with John Swinney in the chamber but people it was quite laughable and so you weren't allowed to sing at weddings remember that one you weren't allowed to dance and I thought um I was talking to people who thought this was questionable yeah um so it wasn't I'm not trying to interrogate the decision but it was quite interesting around do I say this or do I know in the atmosphere of people that terrible that MSP is saying oh my goodness you know and I thought no I actually feel that confidence of a different community which were musicians and people in the wedding sector who'd been hammered in hospitality so I'm going to I feel content what I felt was that and it's only natural for you in government and your new position then you can't be everywhere you can't be doing a big job like that and also be at the coface you can't be and I think we want that one out quite carefully between us in terms of exchanging the chamber to get changing the policy so I think it's right so I don't I don't mean don't misunderstand me so I don't want to shut down scientific debate so during Covid there were choices it wasn't always clear so should you sing in church should you allow Islamic shoulder to shoulder worship should you allow chanting in the synagogue I mean nobody there isn't a book you can take from the bookshelf that says yeah that's what you should do if you have this type of virus of course there isn't so it was all about risk piling on risk and trying to so therefore the debate about what things you should do and what things you shouldn't is completely justified but you did you were kind to john swinney and john swinney was kind to you so it wasn't you weren't yelling at each other and being horrible to one another you didn't think he was you didn't think his motors were bad he didn't think your motors were bad that is entirely fine and that that is good for public health because the discourse is mature and people can debate it and then whoever's the decision maker can can make the choices because we elect people to make decisions I I never made any decisions it's my it's my get out clause for the public inquiry I never made a single decision there was other people making the decisions I just gave the best advice I could and translated it for the public but so so discourse is good even inside the science because the choices are not always clear rudeness vicious and being actually saying there are nanoparticles in the vaccine and bill gates is trying to track you that's just nonsense nonsense and should be called out as nonsense I have another question here hi so there's like two parts I wanted to speak about so engaging with the community so just a short example so I work quite closely with the communities ethnic minority communities engaging on kidney health and disease and organ donation and we know that working with volunteers from the community has really helped to build that trust the project we've been working on has been 10 years and it's all about empowering the knowledge and that's what's helped us have a successful project in the past 10 years and more awareness around organ donation now obviously it's I wouldn't say it's a still as big as COVID the COVID vaccine or COVID was but it's still building that trust and organ donation is a taboo subject within ethnic minorities and the black community and using the volunteers has really helped so I felt this is an example that's something that we can take forward and use another it's like a model basically that we could be able to use whether it's about Crohn's or lung cancer and even now with cervical screening there's a new project that my friend's working on as well again using people from the ethnic minority community so I think engaging with the third sector and the volunteers building that trust because I know from being from the ethnic minority communities there's a big language barrier there's lots of misconceptions you know one of the examples was about organ donation was that the government now owns your body so when you die they can take all your organs you know so it was all about overcoming that myths and misconceptions how we did that it was all about building trust but it needs to be that link corridor between NHS and the community going forward now when we look at the health inequalities and we know all the issues around the different chronic conditions how can we now move forward and when we know there's such a big I mean it's huge when we talk about health inequalities health disparities whatever you want to call it to move forward we feel education is the key that in empowering someone to make the right decision whether it's using faith leaders whether it's using people from the community people that look like you act like you talk like you educating people from schools I don't know if that's something that's to be thought about to be talking about different conditions because we talk about cancer we talk about I mean we know cancer is big and it's huge but let's try and talk about other conditions as well you know autism before it was never heard of we think 10 years back you know but now you know people that have got children or that are undiagnosed we talk about it it's something that we have to be considerate about whether it's about you know menopause whether it's about pride what it's about LGBT we need to talk about these things so people we empower our children because they are the next generation now when we're talking about Covid I always remember is it Jeannie Goodley oh godly sorry the comedian I always remember Nicola Sturgeon going on and then literally within an hour or two she'd have something on facebook or something and her message was exactly the same as what Nicola Sturgeon had said but it was in a really funny banter way which put the message across so it's things like washing your hands remember it was the that's all saying happy birthday I don't know how many times or somethings but it got the message across so we need to look at ways about how to engage with communities using different methods but we need to stop and halt I think the ever-growing health inequalities in all the different conditions so it's kind of a message out there about how can we do this but we need support from everyone yeah I think absolutely agree with you I think we need to that there's something about the tawd sector all those working at the grassroots level that there's a resources there that we haven't tapped into yet and I think that we need to do more research to understand the power and the strength through which they come with usually now we tend to go to this to the grassroots community groups based on and we ask them to volunteer their time for free and I think that itself is a problem you know you're going to ask people to help to support you know they are willing to do it because they love their community they are charged up they will do anything for them but we can't continue to rely on that goodwill so there needs to be a way in which we build a system around that around the grassroots and perhaps for someone like Jason to think about how can we bring them into the formal structure of health care in Scotland it's nice to see you again nice to see you the the organ donation story is a great one the work you and others have have led is a terrific story of community engagement of changing the language changing the story but but keeping the core message the same this is about life saving this is about honouring you and your family but also helping others it's an absolutely terrific story it's it's across all generations it's across all cultures and done properly it's it's hugely important so I think there's lessons in your in your work in organ donation for all of us about how how we do that you did it with that community you're part of part of that community not all of it it's a disparate community of ethnicity so I think I think there are things in there that we could we could learn before come to purge talking about different groups and how we communicate with faith groups and black minority ethnic groups is it fair to say purge at one of the big groups that we are your organisation crones and colitis deals with a huge number of young people who have this condition crones or alters colitis and one of the things that the group has been very successful I think is every single every single meeting I think can't remember one that hasn't been even before you joined a young person will tell their story and it's the stories are so unbelievable because at the time when they were diagnosed and horrendous impact on school choices at university but quite often out the other side but we had someone elene sy'n the audience from crones and colitis you remember he came with his father I think he was only 11 or 12 and he had this massive impact on the group this 12 year old read out something and obviously written with his father we had a massive impact in the room actually sometimes I think of we could broadcast some of that as well to groups of young people it would make a huge difference in young people coming forward so it might have this condition what do you think bourge I think I think you're right Pauline I think it's about it feels like we are talking about trusted faces trusted places where that message is coming from and it's so important that it's the right age group it's the right sort of community link that we're built to you know to relay those messages bit crones and colitis I think the interesting bit is unlike many other chronic conditions like you know heart disease we people are diagnosed quite quite young so about a third of the population will get diagnosed you know before they hit their 30s and they live with it throughout their lives and it has a massive impact you know from your from your school life to to your to your social life to your relationship so it really does affect all aspects of your life and it's really powerful I think for for young people to hear from other young people you know that's you know how it is to understand the condition better but also to cut to to come forward certainly and I just want to kind of pick up on sort of this importance of working with communities and and going to community leaders that there's also a challenge here because there are multiple chronic conditions so you know obviously kidney care and kidney donation is is one aspect of it which you have done absolutely brilliantly it's a great example but there's the you know the bowel conditions there's heart disease there is lung conditions in asthma so there's a lot of demand on community leaders and communities time to to share these public health messages so I think there's a lot of learning for both health services but also national charities like ours with a larger footprint to work quite collaboratively and sensitively with communities so that we are you know we are not demanding too you know too much I mean not you know sort of competing against against each other so take one last question I would just like to ask if there's anything can be done about the council's closing public toilets because I see that as discrimination against people like myself that's got bowel disease that you kind of get access to a public toilet and you're told to go into a pub or somewhere and tell somebody you've got a problem or show you can't wait card and it's very embarrassing and also it's very very difficult to access disability benefits I lost my disability benefit even though I had evidence from doctors hospitals nurses consultants or the years I've had it and I lost every penny that I used to get to help me to live kind of reasonably normally a bit money to help me washing bedding and underwear and shampoo and carpets and different things when you have bowel accidents I think society really has to woken up to build disease yet it swept under the carpet has been a that's not a serious enough condition to warrant any help thank you very much I mean the I mean the subject of accessibility to toilets is a big issue for many conditions and in fact I think there's been a few opportunities in this parliament legislation for example it's unbelievable the resistance this has had so mean a few others before the pandemic I think it would have been thought well if you're building a new we don't build that many shopping centres these days but where you're building big buildings shopping centres in other countries you see it and if you've ever been to the states or it's it's easy to find the toilet not not in Scotland it isn't in the shopping centre so that there's a number of us believe that that if we're ever planning for the future that needs to change railway stations we're still renovating railway stations and it isn't just people with bowel conditions it probably is probably the whole of the population it's incredible the reasons that I have to say government have come up with that's why I can't do this because because but I know it's a big issue not just for IVD sufferers but changing places is a really important facility to have so I think I will certainly commit to going to campaign for that but we're not really discussing we're not really here to discuss one particular condition but I think it's having me not to comment on what you've said there which is that for me at training this group and listening to people just my observation do you think you know a bit about the group? Do you think you know a bit about what we do here? It's become apparent to me just as a lay person that Scotland has got the highest incident of anywhere in the UK well why is that? Well I've got the highest incident of AME or something we don't really know the answer to that question and as Purdue said earlier we've got a higher incidence amongst young people and it's rising so there are important things messages that have to come out of the health service in relation to that because and for that very reason the thing that's the point you're making we have to talk more about bills I mean I always thought that you get taught about me maybe do get taught about the importance of heart function liver function living healthy hydrating but you don't get a lot about the importance of your I'm now straight into your territory now Jason the importance of your bill to your wellbeing and I suppose it's moving back to your point because I'm interested in the subject I'm on all social media and everything TikTok snapchat you name it and it can get very confusing when it starts to pick up that you're interested in it everything gets thrown at you about how to look after your bill and I think to myself it's probably nearly a work I think for a health minister probably just to to bring this together but I'm going to let the panelist comment on that anything else that you've heard and you're closing remarks to assume you want to go first this time is it is it on the public public as you want to see well I guess yeah I think just to start with the public toilet I didn't realise that was a challenge because I work mostly from home so I don't have instances where I have to live home for so long but I think that's an issue that I must be looking to if it's causing problems for some group of people particularly people who have challenges or who are disabled in different ways I think it's only fair that the politicians pick that up and on a general note just to pick on the point you raised about working with communities I have a great desire to see more work done at the grassroot level but more importantly see how we can build a system around around the work the partnership that we have with the grassroot community because they have the willingness they have the power the eagerness they have the local knowledge but also they are all equally experts in different fields who can bring a lot of expertise and resources to help with public health messaging encouraging people and getting the communities to engage with the messages that we have so the question is what can we do to build that piece of work or that area of work into the health system which is very important and more importantly general to every single person we all have a role to play you know we need to do our own little parts you know be critical in our thinking be more careful about how we share information or misinformation be a little bit adaptable cognitively flexible in how we when we share a particular word for you and hopefully we can work towards a more health equality society thank you to spin jason so I agree with your structural point I think society has to look structurally I think it's probably a point for the cross party group to cross party groups one of the places where that lobbying and information could come it's not going to fix it for you tomorrow but it's certainly it's certainly worth engaging with the cross party group Pauline and others about how that might lead to those changes I agree with you that that needs done not just for this disease but for young people older people that all kinds of reasons and it is getting harder even even for those of us who are who are working age population passing through railway stations I don't have 50p in my pocket every time I need to go to the bathroom frankly I'm not sure how much it is but it's too much whatever it is so fundamentally in summary I think I think we've heard consensus on changing the language making sure the language is relevant to to everybody who's who's hearing the messages we've heard consensus on the voices that you have to use for that messaging it has to be of course experts but also community leaders and I'm struck by Josephine's point on trust and that trust of the language and trust of those communicators one of the reasons why I think COVID the COVID communication got got positive reviews in Scotland was because of that trust or polling suggests that people even people who didn't like the messaging or didn't like the messengers for political reasons or for whatever else they trusted the message so the vast majority of Scotland trusted the messaging they were hearing and that trust was crucial as soon as you lose that you've lost the ability to get that message across and that's what Josephine the point Josephine's making I think about different communities thank you. I just wanted to recognise the issue around access to toilets unfortunately accessibility across the UK is understood as step three access only and public toilets access to public toilets needs to be part of that debate and we are hearing about sort of half of our people living with chronicitis have been refused access to toilets at a you know time of urgency which is a huge problem so if you ever have a if you know anyone if you ever have ever have been refused with your card or without your card do you write to to us we will write to that company and try to get them on board so really have to kind of offer that help in terms of disability benefits I want to take more air time but agree that incontinence and urgency is not understood at all so that needs to that needs reform do you come to cross party group that will be an issue that we would love to pick up at a later date I think today I mean I have learned so much from from Jason and Josephine I'm so grateful to the audience as well the most important thing for us is I think it really shows how much people can ordinary people can sort of raise awareness and change and bring about changing their communities as well so I'm really kind of pleased to see that the majority of the audience here today were quite comfortable talking about our toilet habits which is which is good and so if you're so this is my plea because I'm head of campaigns so I have to do this right it's my it's my job and if you can help us raise awareness we would love to work with you and maybe next year the panel might be about we all talk about who thank you very much and so we end here I'd like to thank all the contributors and you for coming along to this and I should emphasise that this panel is also not just hosted by a cross-party group and IBD also the cross-party group on health inequalities and you've heard why it was important that we work together on this. I would like to thank her amazing panel Burju Borsig, Professor Jason Leitch and Dr Josephine Adakola so I think a big round of applause is definitely due. A lot of thought for me too as politicians we really enjoyed it. Well there's a lot going on in the Parliament today so if you're going to be hanging around the face of the politics there's a lot going on there's including Scotland, a good global citizen and the ethics in artificial intelligence which has become a very interesting subject in this Parliament itself very topical indeed so enjoy the rest of your day and it's really great to have you.