We wanna thank Darren and Leanna and the team in New Zealand. They took us through some brilliant sessions this evening. We're now gonna go and have an overview of ADHD in South Africa from professor Renata Schuman and Claire Tobin, and then we're gonna hear a reading from the Goldilocks and the Bear Foundation.

Called All These Things Are Important To Me. Good morning, everyone. Welcome to everyone joining us. It's a great opportunity, and I'm so glad we're having this conversation. I'm going to give you an overview of ADHD in Africa and South Africa. Now at the moment, the current population of Africa of one is of one point two billion is supposed to be doubling over the next thirty years, and Africa is faced with unique challenges. We are very, very under resourced in terms of everything, but especially also mental health services, never mind ADHD.

To zoom in in South Africa, now this is at the tip of Africa as most of you might know, and we are based in Cape Town. You might recognize the pictures of Table Mountain and then also World Cup Stadium. Now we have a population of almost 60,000,000, but we only have 650 registered psychiatrists in the country. Now according to my knowledge, for example, in The UK, there's about 13,000 psychiatrists. And of these 650, around 400 in the city is in private practice, which service about 16 of the population, and the other 74% of the population is serviced by the remaining psychiatrists. That gives us a ratio of more or less one psychiatrist per 100,000 people.

We also know that the prevalence of ADHD is roughly around three percent, which means that there's about two million people in South Africa with with ADHD, and we are only a handful of psychiatrists. So it goes greatly unrecognized, unaware, untreated. So what has happened in South Africa over the past couple of years? Now since roughly about 2015, we really have been having this conversation about ADHD, and we started advocacy groups. We will talk about the South African Special Interest Group for psychiatry. We will talk about the guidelines that we've published, but then also about the Goldilocks and the Bear Foundation as a way of addressing the issues and the dire needs in the country. Now firstly, if we look in terms of research.

Although there's significant attention to ADHD globally, in Africa, there was virtually nothing going on. This is the number of publications since roughly 2000, and you can see maybe four a year in the whole of Africa, nine a year. And then roughly around 2015, we had a little bit of an increase. I couldn't find the complete updated stats now, but this was primarily due to our group starting to do research in terms of funding for ADHD and also what is the impact in terms of real life issues for patients with ADHD. So publications have been increasing and awareness have increased.

So currently in South Africa, there's two guidelines that we follow. These children guidelines that was published in the South African Journal of Psychiatry way back in 2013. And then the what has happened in 2015, we did research in terms of a funding model proposal specifically to aim for treatment of ADHD in the private sector. And this is the first South African study that was really exploring the situation with regard to the prevalence and treatment of adult ADHD specifically in the country. Until then, we had absolutely no idea of what was going on in South Africa, both in the private and the public sector. From this, we have presented internationally at UK. We have published. We looked really in terms of comorbidity.

We looked in terms of how many psychiatrists see, ADHD, what medication is prescribed, etcetera. So we understood the situation better. From the study, we also followed numerous publications, which is you are able to to access free online in South African Journal of Psychiatry, and we really aimed at things like why should we pay attention to adult ADHD? And I think this is the whole purpose of this conference also that's been arranged. And what we've seen as in our interviews that we had with key opinion leaders in the field is that there's really four themes that's coming across, and that is really that there's a lack of recognition of ADHD as a disorder. There's a lack of access to the diagnosis, a lack of access to treatment.

And also then a life of perpetual failure. And for me as a psychiatrist, I think that is one of the most rewarding things of working with ADHD, not only in children, but also in adolescents and adults, is really how you can significantly change the life trajectory. And now also in late diagnosed ADHD, we have people that have lived a life of anxiety, of underperformance, of feeling like a failure, or feeling bad about themselves. It can really, really change, and they can go and study, and they can successfully hold a job, etcetera, which must previously not have been possible. We also looked at a database analysis of what's going on in the private sector, and in this database, we looked at fifteen thousand two hundred people that.

Claimed for ADHD, whether it was for consultations or medication, And we looked at this one point seven million different claims. So we had a very, very good idea after this study in terms of what is the needs of people with ADHD. We could confirm that if that untreated ADHD double the cost of all medical treatment. You have a higher comorbidity in terms of anxiety, depression, but also physical complications, adjustment disorders, sleep disorders, and even casualty visits. And this is one of our strongest arguments that we now have with the medical schemes, which is the funders of medical care in South Africa in the private sector in terms of increasing ADHD benefits for for, people in the private sector, and we did make huge gains already.

With some of the medical schemes do pay now for chronic treatment for especially children, but also with special motivation for adults. So our key findings was then that the population prevalence of adult ADHD in South Africa was estimated at one percent. But in clinical psychiatric settings where we have patients presenting with ADHD or depression or anxiety, our prevalence is as high as fifty two percent. So once again confirming the high comorbidity. But, also, we know that in South Africa, although international studies show that comorbidity rates can be as high as eighty seven percent.

We see that in our context, in our study, it was only about twenty percent. But that means that we we also need to know that this is only people that could access services. There's many people outside in the community that do not have access to care. We also know that it really increased anxiety disorders and mood disorders, especially if untreated. And then multiple comorbidity was rise and the presence of ADHD more than tripled and doubled the health care cost of individuals. And what is the biggest problem then? Our takeaway message here is that the lack of knowledge, especially of adult ADHD, and a lack of funding for the treatment thereof are two of the main barriers to access to care in South Africa.

There were numerous studies following. This is just a list of what our group have published over the past, it's now seven years, and you can see we really made a had a lot of publications. So we really have the conversation in South Africa extremely active, and we also contributed recently to the international evidence based the World Federation International consensus statement that was published in last year, which we're very proud of to be able to be included as well. Now what has also been an outflow of these research activities? It led to us forming the South African special interest group for for ADHD, and this is a combination of individuals, specialists, health care professionals, psychiatrists, psychologists.

Pediatricians, neurologists, everyone that have an interest in ADHD or improving care for patients. Now initially when we launched, we were only 15 members in the whole of South Africa. Currently, we are 142 people that's actively involved. We have presented a host of training opportunities both for general practitioners, but for also for fellow specialists, but also psychiatrists in training. What we also have then is, if I can just summarize maybe the overall objective of this special interest group, is really to improve the basket of care. And we are really a bunch of individuals with a special interest and passion for ADHD and to improve the knowledge and also the funding of in care for individuals with ADHD.

We look at the diagnosis and provision of comprehensive care, continuous education, not only for health care professionals, but also for educationalists and, anyone that's working with patients and even parental training. We developed South African guidelines, which I will touch on now, and as I mentioned, we, facilitate workshops and conferences. I'm sure Claire will also refer to it, but we just had our fourth Southern African multidisciplinary ADHD Congress, which is a virtual congress, which is always the first week of September. So please save the date and diarize for next year, which is really a multidisciplinary ADHD Congress and proof of of very high standard.

So our ADHD guidelines that we published in 2017 is really the first guidelines in the world that specifically address the concept of adult ADHD. All other guidelines, whether it's the NICE guidelines, CADRA, whatever referred to ADHD in general and mostly speak about childhood and adolescence was only a subcategory or a subsection devoted to adult ADHD, where we specifically looked at ADHD in adulthood. Just a broad outline is what we confirm in in the guidelines. It's ADHD as a lifespan disorder, which affect you from very, very small in infancy.

Right across to retirement and into your very, very senior years. We know it's a cross domain disorder. It's affecting your emotional function, your occupational and academic functioning, as well as your interpersonal and social function. And it causes function impairment, which then leads to that statement of a life of perpetual failure, which is really unneeded. When we look at assessment and diagnosis, there's five principles which we call the five c's, which is so so important, and I know that the next speaker will go more into detail in terms of assessing and diagnosing ADHD. So my purpose is really giving you an overview. It's a clinical diagnosis.

Which really really needs a comprehensive assessment. It's not something we diagnose just on a checkbox or rating scales. We need collateral information from spouses, partners, teachers, whoever is involved in the patient's life, need to assess for comorbidity and it can be very complex in terms of the comorbidity as well. As I mentioned, Grating Scale is not diagnostic, it supports the diagnosis. Special investigations we also discuss what is needed, is unnecessary, and also the place of psychometric assessment which is supportive of additional support a patient might need. You know about the diagnosis by now, or if you're a patient yourself, you know what you're struggling with, the symptoms of inattention, hyperactivity, and impulsivity.

That's present across time and place. It's not only at work. It also affects your personal life. And it's not only a manifestation of something else like sleep deprivation or depression. It it it's really there's a clear diagnostic criteria for ADHD. So although ADHD is part of neurodiversity, if you have ADHD, it means it's neurodivergent. There is a disorder that we need to treat, and it's very important to recognize it as such because especially in terms of funding or accessing care, if you do not get a diagnosis, you cannot access resources of care. And then how do we manage ADHD? What is the gold standard in South Africa? It's really multidisciplinary.

So we look at therapy. We look at educational and occupational support. We have to address the stresses, and we also need to look at lifestyle changes, physical exercise, healthy diet, good sleeping habits, and definitely also limiting screen time. Now not everyone with ADHD needs medication. If your symptoms are mild, you can manage just with coaching, with coping strategies, and also therapeutic intervention and support. But if medication or if the symptoms are severe and you are susceptible to using medication as a treatment option, then we will look at more than just a behavioral program, and that's where we will look at the introduction of pharmacotherapy as well. And when do we choose medication? We really.

Do not try to follow an algorithmic approach in South Africa. So it's not like you have to use a then b then c. We really individualize treatment according to the patient profile and also the medication profile, how it works, what is needed in your life, what is the specific needs, the age of the page, the age of the patient, the the comorbidities that might be present. And we have to individualize also in terms of balancing efficacy and tolerability and then frequent monitoring of the patient. Now until last year, we only had methylphenidate in South Africa. But since October last year, we are so happy to say that that our armamentarium of treatment options in South Africa have absolutely exploded. We have atomoxetine.

We have amphetamine groups, and in amphetamine, dexamphetamine, and lisdexamfetamine. And suddenly, we also have many, many generic and clones that have entered the market. So since last year, ADHD treatment and what we can offer our patients has really exploded in South Africa, which make individualized care so much easier, but still very difficult to afford and very difficult, if not impossible, to attain if you're a public sector patient. So ADHD is a lifespan disorder. It has a significant impact on the quality of life of patients and their families.

And we know early intervention is so, so important. And that's also where we then launched the Goldilocks and Bear Foundation, which I'm also wearing my shirt today, as you can see, which Claire will tell us more about. But we believe in individualized management, and one of the biggest challenges in South Africa is that our lack of resources and also still the lack of treatment and access of resources available specifically for patients that's not covered by private health care insurance, which makes use of the public health care system. So where are we working in South Africa at the moment? What is our goals in the year ahead and also even for this year that we still need to take this? We have ongoing awareness and training initiatives.

Not only for health care professionals, but really also in terms of media work that we're doing in terms of raising awareness for ADHD. It was national ADHD awareness day last month as well. We're also really working very, very hard in terms of creating access to diagnosis and treatment for patients both in the public and the private care sector by upskilling health care professionals, teachers, parents, by really advocating for benefits for patients, again, private and public sector. And then one of our big challenges is also to make access to make accessibility to medication easier is to reschedule.

Some of the medication that is currently considered schedule six, which means you need monthly scripts, which make it extremely difficult to access to reschedule that medication to be able to give repeat scripts to patients. Thank you. I'm going to hand over to Claire to tell you more about the Goldilocks and the Bear Foundation.

Good morning and good afternoon, and good day to everyone all over around the world. It's such a privilege to be here. I'm just gonna share my slides here quick. There we go. So thank you, Renata, for giving me that introduction. So I am working for the Goldilocks and Beer Foundation. I am the psychiatrist there. And I just wanna tell you a little bit about the foundation, what we do, and where we fit into into the ADHD in South Africa and specifically in Cape Town. So why we exist is because mental health in in South Africa has been given, especially in the public sector, has been giving little attention. So you can see there, like, a content consensus study in 2020 said that one in six people will suffer from a mental health condition.

And only twenty five percent of those people will receive treatment, which is very, very little. So you know that ADHD, specifically, it's a it's a lifespan disorder, and it affects about five percent of children. And not only that, there's also the comorbidity of anxiety as professor Skumon was talking about, Especially when it comes to low income and middle income countries like South Africa, mental health problems affect about ten to twenty percent of children and adolescents, which is very high. And where we are based in the Western Cape Cape Town, only should about seventeen percent of those children will have a diagnosable mental health condition.

And it's because of all the poverty and the social conditions that these children suffer under. Nine percent of all teen deaths are due to suicide, and ninety percent of those have an underlying mental health condition, which is why we find it so important to to help children do early intervention and to see how we can best help children. Because at school and community level, children with ADHD are often not identified. Firstly, because there's no real awareness in the communities. There's a lack of knowledge about ADHD. Often, children are labeled as naughty, stupid, or lazy, and they often just sit in class, and they are they are.

Given so many negative comments, and it's so difficult for them to cope, and therefore they become even more naughty. And often these children are not referred for further treatment for for ADHD or any other mental health conditions because teachers are sitting in classrooms with 40 children. It's extremely tedious to refer these children. They have to fill out long 50 page forms to get a child any help. So it's these teachers are overburdened, and they do not have the capacity to help these kids. Although mental health clinics exist in our public sector, children with ADHD often never ever reach the point of the diagnosis and the treatment of ADHD, and this is when they get lost in the system. Often, these.

They go to the connects, there's difficulties with inadequate information. These children are sent away. The parents said, you have to come back, and they they actually don't give them enough information and awareness about ADHD. There's also challenges around transport, being able to get to the hospitals or clinics because they have to take a day off work. So it becomes extremely challenging for these parents and children to get assistance. This is where we come in, the Goldilocks and the Bear Foundation. Our mission is to ensure that all children with ADHD and other mental health problems have the necessary mental health support to reach their full potential. So our core service, is basically screening and intervention for for children.

In in the primary school level. So we target early intervention. We try to target these difficulties early on and make sure that the child is diagnosed and treated correctly, whether they need to go to the clinic or hospital. And we also try to exclude other, you know, psychiatric disorders such as anxiety, depression, autism spectrum disorder, and we really try to see if we can do other assessments to see if there's any visual difficulties, hearing difficulties, or developmental challenges, educational difficulties such as, dyslexia, or if there's specific learning disorders, we try, assess holistically to try to see if we can get the child the correct treatment. What's also important that we do is we spread awareness, and I think.

Professor was also talking about how we we do a lot of talks through the media and do events. We have very active physically active cofounders who are involved in running marathons and trail races and all of that extreme physical activity, and they raise funds while doing this. So it's really amazing. We even had a lockdown marathon when we were all sitting there. People ran 56 kilometers to for the to Oceans marathon because they couldn't go run because of the the lockdown. They were running this in their backyard just to raise funds, and I think through that event, we we raised about $20,000. So it's really we we do a great idea great things through events in the media. Another thing that's extremely important is.

Being in the communities and spreading awareness about ADHD in the communities because often there is a lot of stigma. There are a lot of myths around ADHD, especially in a small underprivileged communities, and it's it's extremely challenging for them to to understand what ADHD they often just think these children are naughty and the parents don't control their children. So this is why we try to speak to community workers, social workers, people that work within the communities in the early childhood development centers just to give them awareness so they can spread awareness and to also, speak to parents and help parents get the help that they need. We also do parent talks to.

To to parents to show how they can support children who have been diagnosed with ADHD. We recently did a talk to foster parents who are the foster parents of children with ADHD, and such valuable information and such extremely useful information that was given by both the presenters and the the parents was it was incredible. We had an amazing discussion around that. So, really, we're doing a great job in in trying to just bring knowledge into communities. We also placed an emphasis on training both for the Department of Health and the Department of Education. Professor Skuman also ensures that she she donate some of her time to train the medical officers in our clinics on how to manage ADHD.

And we also place a huge emphasis on upskilling our professionals, our volunteers to ensure that they are up to date and can help to the best of their abilities. We have the knowledge and the power to to be able to assist the best way we can. We have achieved so much since 2017, since we we started the Goldilocks and the Bear Foundation, and we have held four successful art auctions. We're having another one coming up on the November 5, so hopefully that's also very successful. We have received the SASOP award, which is a South African South African Society of Psychiatrists community award for for community service.

And we've hosted our a color run where children from the local schools, then the privileged schools came, and they had so much fun throwing powder around and just really enjoying the day. I had some pizza, so it was really a rewarding day. We've had three successful congresses. As Renaud was saying, we'll have our next congress next year, which is a multidisciplinary congress where people from all over the world share their knowledge, their their professional, research, all of those things, and it is very valuable to to attend that. And then also very importantly, our book, all of these things are important to me. We published that in 2019.

And we have sold thousands of books so far. We it has been extremely successful. It's known as the best seller in South Africa. And, Renata Skamani, she's gonna read some of the book to show you what a beautiful book it is. It is a children's book, and we we hope to get it on Amazon soon so people from all over the world can can have access to the book. If you want to contact me, you are welcome to send an email. If you wanna get involved, if you want to get any advice, you can you can always contact me on info@gbforADHD. You're also welcome to follow our Facebook page. We we have we give tips, daily tips, and advice to people all the time.

So you are welcome to contact me, and I am going to hand over to Renata Skuman for the book reading now. Thank you, everyone.