We're going over to Carola Stivala of ADHD Europe. We're incredibly excited to have her, and it's one of their one of our charity contributors, and, obviously, it's they represent the whole of Europe. It's a really important group, and we're absolutely thrilled to have them. So welcome.

Hi. Thank you. Good afternoon. I hope you've been really enjoying your conference. It really sounds like there were a lot of good speakers. Thank you for having me. No. Well, thank you.

Do you want to introduce ADHD Europe? And I'm gonna bring up your slides in the background. Okay. I could also share them if you want, but that's fine. Okay. Yeah. No. Do ideally, I think if you share them. So, like, do want to do that if you can? And so we're at the yeah, that start point. For now. I'll let I'll take you off. So look, what they're going be talking about is they've done a primary survey on ADHD in Europe. And it's our own research, and it's a it's a really big deal. We're excited to be talking about it here here today. And, yeah, and and she's just sharing sharing her slides so that we can do that. Yeah. I'm gonna bring her back. Figure out how to get it. I think it is I will do it. I will do it for you. So.

Do you want to do your introduction? I'll bring up the slides, my end. Yes. Okay. So I'll start with telling you a little bit about myself.

Carola Stivala, I was born in The Nether in Malta, and I lived in and was educated in The Netherlands. I went back to live in Malta in about 2001, and I found out through raising a family that we have ADHD in the family. So I got involved with the local family sports organization, ADHD Malta, and worked with them on the committee, became secretary, became vice president and was really motivated to help the the local ADHD community. So from being involved in that I also joined the board of ADHD Europe in 2018 and there we we looked at what's what was going on inside Europe because ADHD Europe represents all the Europeans in the area and advocates on behalf of them for their rights to have equal access to diagnosis and treatment.

And we're basically a platform for all the different countries to come together, share information and collaborate, help with research for the European community. Although we our number fluctuates a bit, more or less we represent 29 national and regional ADHD organizations, including from The UK quite a few. The website as you can see is adhdeurope.eu and here is the email in case you would like to reach out to us. We always recommend that people become members of their national organization, but if you do want to join us even as professionals to show that you care about ADHD in this area, please do look at our website. If you'd like to go on to the next slide. Okay. So adhd Europe had already in 2019 and 2011.

Done some surveys to kind of figure out what what the situation was both from, you know, the the countries that we know more about, so like The UK, but also figuring out what's what was going on with all their members. And in 2020, when there was COVID, we put together a new report. The whole report is about 55 pages, so I'm not gonna share that. I'm going to be looking at about 20 slides to share with you, But it is freely available on the ADHD Europe website. You can download it as a PDF and look at all the country profiles. Okay. Next slide. The you've seen the title? Yes. So the countries and the members that took part were 22 members from 19 countries. Just to make sure we know which ones.

Belgium, Croatia, Cyprus, Denmark, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Luxembourg, Malta, Slovenia, Spain, Sweden, The Netherlands, two organizations, and The UK, three organizations. Next slide. So the aim was to figure out what was happening in 2020, what the situation was, and we updated the questions by reviewing them with the board and our professional boards. At first, we started using Word documents, then we went over to Google forms so that we could use charts and graphs, which is what I'm gonna be showing you. Now there are limitations because the information is of course based on what the patient organizations, the the support organizations.

Were giving us. Also regarding their health systems and regarding the pharmaceutical situation. Next slide. Okay. So we started out with some basic questions to give ourselves an idea and an important one was, does your country have a national guideline for ADHD diagnosis and medication and treatment for children and adults? Quite a few countries said yes. However, there are some that did not have a policy yet or hadn't put it in place yet. That was the case with sweet with Sweden, but I think it's now in place. And for some, it wasn't there yet, namely Italy, Greece, Croatia, Luxembourg, Malta, Hungary, Cyprus and Slovenia. We are referring to a national policy in the sense that it would be available to the public and to the professionals.

So not only a professionals guideline. And the importance of this national guideline is that there is a standard of care that is agreed upon in that country. Thank you. Next slide. Okay. The second question was, if your country does not have a national guideline, is there a standard process for ADHD diagnosis, medication and treatment in the national and the private health services? As you can see, there was a large chunk for who it was not applicable and maybe a bit of an overlap with the mixed feedback, but unfortunately, we see that almost 40% are saying that they receive mixed feedback or they feel that not a standard procedure is being followed. So for the from the respondents.

The additional information was also that in their country, there might be a history of a psychoanalytical approach and a lot of stigma still about ADHD. Next slide. Does your country have national health services for the diagnosis, medication, and treatment for children and adults? Here, a majority say that they do. However, in France, Italy, and Cyprus, the member countries mentioned that they only cater for 18. Next slide. Does your country have private health services? So these are non governmental and most of the time people have to pay extra for those. And in all countries, those are available. Unfortunately, the the fact that people have to pay for these services.

Means that they could be a stumbling block. We asked what the the range of prices were for these services and they mentioned from 300 to a thousand euros, which really could be a stumbling block for certain people. And also because it might not be available in all the different areas in a country. The reasons why people might go to private health services is because they have shorter waiting list or there might be really specific specialists that you'd like to speak to. And you could maybe have more frequent appointments or a better location and timing according to your liking compared to what the government might be offering. Thank you. Next slide. Who can diagnose a child? In some countries.

Well, let's look at the figures first actually. So here you can see that it's mainly the psychiatrist, but also a large overlap with the other professionals. See that by the percentages. And this is a tally, so not everything is for each country. Now in the NICE guidelines and from The UK, there is the recommendation that assessment should be done by a multidisciplinary team. But, unfortunately, in quite a few countries, it is more like a chain. So the family doctor would refer you to a psychologist who went after diagnosis would refer you to a psychiatrist.

For treatment options and then the psychiatrist would tell you to go for your monthly prescriptions to the family doctor and then only have a monitoring visit every six to twelve months. But again there was a large variety of how this is approached. In some countries there are clinics, in other countries there are really tight working local treatment centers that are more like normal health related, some are specific for mental health, a variety of circumstances. Next slide. Who can diagnose an adult? Here we can see that the majority is diagnosed by the psychiatrist, quite a few also by psychologists and neurologists. Really depends on who is authorized in the particular country. They might also work together. However.

We know that and we have to understand that when we're looking at the diagnosis rates, it's also only in the past decade that there has been more understanding of ADHD being a lifelong condition and the symptoms possibly start in childhood and might continue for about seventy percent of those diagnosed. But because not much was known about ADHD in the eighties and the nineties, a lot of older adults are coming for a diagnosis and they do have a bit of a different path than the children who are newly diagnosed currently. Over the last decade as well there has been more interest in ADHD in women in particular, looking at their hormone levels that might change also during pregnancy and during different stages of their life. These.

Effects could actually also influence their medication efficiency and therefore it warrants interest from the specialists and from research perspective. Another interesting research point was this transition from youth until adults. And so we're talking really the ages when they're going from 17, 18 to about 24 when they're changing from schooling to working and establishing families and becoming, you know, career focused. There might be issues with early school leaving problems where there's very little research about ADHD in that topic. Also, any kind of smoking or other substance use, sleep and employment or underemployment. So these were things that were looked at in the most recent decade more than any any other time.

And let's remember as well that in the countries where these national guidelines are not in place, it means that cultural stigma can persist and specialists in the field who are diagnosing adults when there is no national guideline in place can therefore still not be held accountable for certain standard of patient care and they might not be keeping up to date with the latest research about ADHD or medications in the field. Okay, next slide. Alright. Which tools which diagnostic tests and tools are used for children? Multiple answers were accepted here, and so you do have a bit of a tally. Here, the CPI, it stands for the clinical personal interview. So that's not a specific test, but it's always is a part of the process.

So the process is normally an interview together with the the parents, feedback in the manner of rating scales from schools, and maybe a specific test, sometimes an ADOS to see if there's any autism traits. The WSC is often used for attention and speed of replies. All the different tests have their own benefits and a multiple multiple are used. This other category is actually that they're using some of these scales in their own languages. So in French, in Spanish, there are many of the English, the former English tests that are now being translated and I believe even the Diva have now introduced a children's Diva, which is also translatable in many languages. So these are a bit the tests and the tools that are used. Next slide.

Here we see which ones are used for adults. Again, the process is that you would have the adults going to a psychologist for a clinical patient interview, they call it. They do rating scales, They look at old school records or any other job performance reviews, anything else that might be providing information that ADHD had been causing, you know, certain obstacles and assessing how it influences the person. Here we see that this DIVA test is very this one is also a self rating scale. These are all available on the Internet that people can fill in themselves and take along with the with them to a first interview with a psychologist.

Normally, would go to a doctor and then be referred and therefore it's very important that your doctor is really up to date with information about ADHD and you have a bit of an insight in which which tools are used for adults. One more thing that during the last decade, of course, the DSM five, which is a tool for specialists, has been updated and also the international one, the ICD-eleven came out. So that is also something that really influenced this decade. Next slide, please. Okay. Which professionals can actually prescribe medication for children? This was different in the countries, going back again to that multidisciplinary team. However, it's really predominantly the psychiatrists that have the the authority to prescribe and.

Then they work together. I'm sorry. They're doing some works in the area. I hope you're not hearing the the building noises. Sorry about that. So what I'd like to add to this one about the the children, The multidisciplinary teams are not always in place in different countries, which another difference that I came across was the so called prescribing nurse. So in I think it is Sweden, in The UK, there might be some in The Netherlands as well. They have been trained to actually know how to prescribe and how to talk with families about issues that they're having when they're starting to figure out which medication is good and the titration they call it, which medication.

The dosage and any issues that they might come across. They could do that actually with a prescribing nurse, which is a great thing. And also which is an issue regarding the medications that in some countries they have a very digitalized system, so the psychiatrist sends an electronic message to the pharmacy allowing the parents to collect the medicine for six months in a row or sends it to sends a message to the doctor. But in other countries you need to have about five different pieces of paper, your ID card, a monthly note from the doctor, and all these other papers in order to collect this medicine. Yes. Alright. Next slide. Here we can see it also for adults and the most of the children's medication was often covered by the government.

In their health system. However, for the adults, it's a very different picture on getting their diagnosis and their medication paid. It might be completely at the cost of the person. It's gonna be partially covered. It can be completely at their own cost. If you'd like more information about that, I'd refer you to the country profiles in the back of the full report, and that can give you a look. Regarding the figures here, as you can see, it's predominantly the psychiatrist and that's all about that. Alright. Next slide. Are there any differences between the private and national health services in what they prescribe? So here we're checking whether there is the inclination to really prescribe the best medicine for the patients. And.

Predominantly, the people will say that they don't think there is a difference or they don't really know if there is a difference. And there's really a low amount of people who say, like, well, we think there is a difference. And that might be because private, really specialized ADHD doctors in the private health sector, they might be really knowledgeable and more problem cases would go to visit those doctors. So it's an interesting view. Alright. Next question. Are there any complaints procedures for any side effects in the public health system? Normally in countries, and here you see a large percentage saying that there is site where they go to their family doctor or they have a national website where they can.

Mention that they are having issues. And this is regarding serious side effects. What happened during the last decade though and that is very good to remember that of course a lot of things were put online through the government. There's an online system for things And also generic medications. So before we had only certain brands, certain register registered brands that were sold and a lot of generic different companies were allowed to come on the market. And so when people go to collect their medicine, they might get a different brand than another time. And so if a child would all of a sudden start to complain about having stomach ache, They would go to their doctor, but their doctor is not really familiar with this brand.

And sometimes even the specialists are not aware of which new medications are going around in the pharmaceutical area, it really depends if they are involved or if even the patients are involved in, you know, providing feedback, providing information about side effects and knowing what the medications are in the health system. Thank you. Next slide. So this one is comes with a little bit of an introduction. So as ADHD Europe and I think most sports organizations, we really promote multi modal treatment plan. But we do feel that if your your specialist refers you for medication, you should really give that a try. Now medication is therefore a really important tool for the patient and for the specialist in their treatment options toolbox.

To ensure that really you find the best treatment for children and adults, so that they can live their best life and achieve their goals. You're seeing an overview here as a tally of which medicines are available in which country. However, it really does not mean that all the medicines are in all countries. You have to look at the country profiles. In some countries such as Greece and Cyprus and Italy, Hungary, there are very, very few. Especially in the Mediterranean area, there might be only three, four medications that are, available. Here you see the Miles per hour stands for methylphenidate and the S stands for short acting.

You have certain brands that we mentioned and the generic form. So the the other new brands that have come on the market. You have the long acting of certain brands and then you have other medications where here we've put the full names. And these for example are the stimulants and these are the non stimulants. And for example, for this particular substance, you would need to take it for a longer period of time before you could actually notice an effect for the patient. And some medications are used more when there are issues regarding aggression or and others are used more when there is also anxiety and depression. So some of the countries did not give us any medical feedback and some we also went to look online. However.

It gives us a bit of an overview on which medications and what there is over the whole region. Now important to mention that there is very little information, public information and even research about how these generic brands are compared to the branded options, how they are doing in the market because we would assume that now it's been five, six years that definitely they have been rolled out. And most of the time, it's the national government who is using now the generic brands instead of the the brand options that they did before because of price and because of EU regulations. We've heard, especially after COVID, out of stock issues even from countries such as The Netherlands and Iceland, but especially in the Mediterranean area.

Hungary, Luxembourg. We often hear that the medication is regularly out of stock. And that could be really detrimental, to children and youths who are doing their exams, for adults who are at work, or for adults who are taking these longer acting medications. So that's very unfortunate.

Again, I refer you We've to a we've had a question.

I'm sorry about the noise.

Don't worry. We've had some questions. We have a question actually asking, so at the moment in The UK, there's a very significant medication problem. There's a national patient alert around the fact that large amount of ADHD medication is not going to be available. And someone else is, are you aware is that happening across Europe, or is that UK in your knowledge?

It really it really is in different locations at different times. First of all, we have to remember that all these medications are very strictly monitored. So when it leaves the producer, it's often, you know, transported overland, oversea. We're talking about islands. We're talking about rural areas. And, of course, a lot of them go to The UK first and then our ships also into Europe after that. So that creates complications.

We're seeing I a think lot of what you're saying, which is I think quite important, because there aren't very many suppliers. And so what's Now there are more.

And some countries have their own suppliers. So if you look at, say, Iceland, I think, and Sweden and some of the other, Norwegian countries, and especially The Netherlands where I know it for sure, they can make their own medications as long as they have the ingredients. So that really, you know, disperses the problem a bit. But it has been in all countries an issue, and I've heard that from America in in similar manner. And you can see online sometimes how people are advising each other how to, you know, skip medication in the weekends if they can so that they stock up and they keep some extra for their exam periods. It is it really shows you that there's not.

A really good stock keeping system, but we have to keep in mind supply system problems during COVID.

No. I did a terrible thing. I I I interrupted you. We're we're we're short on time. So let me Really only two more slides, and you've got everything covered. Okay. Yes. Okay. Because look. Here are the conclusions.

We have positive trends that when we look back at the last decades truly, I apologize for my neighbor. The positive trends, there are a number of countries where their national guidelines have increased, and there are more medication brands and generic medications available. However, and another positive, that there's also more specialist awareness about ADHD in adults, ADHD in women, and the lifelong condition of ADHD. But the negative trends of long waiting lists and lack of adequate national health services for adults, or maybe they could make family centers. Those are not in place yet. There's a need for more research about the differences between the branded and the generic medication.

And there has to be more access to a variety of medication, especially for the smaller countries and the islands. And we really need to have also the, specialists advocating for us. So do ask your specialist. And this really is also a call to action for all of us to be an advocate, to promote the rights of everyone with ADHD, and see what you can do to support it. The survey really gives you a clear overview of this ideal of wherever you're living in in the in the European area. Having ADHD, child or adult, is really not the same standard of care medication. In the last decade, we've seen many people moving from The UK to all different countries.

In Malta, we have a large, you know, foreign community. I think most countries can can claim to have that. So our resource is really convenient for those who are moving from country to country, but I do hope that it has given you a bit of an insight on what's happening in the European area. If you want to talk about it, have questions, please get in touch. If you can show the last slide, I can show you, again, the website where you can find the reports. It's free. And you can send us any emails that you'd like on this email address. So thank you very, much, and I hope that you've enjoyed.

This. Also, I I really would like to end with a shout out to Australia and New Zealand because they have really taken huge steps also in the last two years. They've made wonderful resources. We watch what they're doing. They made this lovely poster with terminology, how to talk about ADHD, and how we can use that information in the media. There's still a lot of stigma, I think, worldwide, and I hope this conference helps to reduce that and change it. And I'd like to shout out particularly to all the professionals who have been very supportive of their patients. And again, I think, you know, we have to be grateful for the support we get, but we also have to advocate each of us in our own way.

Thank you very much and I do wish you a lovely conference. No, look, you've been wonderful. And obviously, look, we're on a very, very parallel mission, which is we're looking to use the information of different countries, different places to rise everyone up. Right? That's our goal. We take the best and go, look, this is what's happening here. You should look at that. And it's a much easier conversation to have when you could say, like, others are doing this and you're not. Certainly, when you were talking about one of the sites that really jumped out at me was the countries where you can only get a child diagnosis of ADHD. And what people won't know that in The UK, we only recognize ADHD in children in the year 2000 and adults in 2008.

We were in that same place. And my understanding from how that 2008 happened was it was a court challenge. Presuming the parents of a child and then the child themselves were turning 18. They were like, well, I'm 17 and eleven months and thirty days. And what you're saying to me is that this medication is really, really beneficial for me and making a big difference in my life. But as soon as I go over that day, it's not. And you, as the NHS and the prescriber, have put a limit to mean that I don't have choice here. You're saying, no, we got work yesterday, not today. And that's clearly ludicrous. But that's how it was a fight. It wasn't easily given. And so these battles that we're doing across, and I talked with someone in.

One of those countries, they were brought up in The UK, and in that country they do accept ADHD in adults, but only if you're diagnosed as a child. And this person's looking at me and going, yeah, you I I obviously wear it in this country. Clearly, your education system is perfect in picking up, which is a pretty bold assumption. But even if it was, I wasn't here. So what are you talking about? Like, I had to be picked up as a child, but I wasn't in a place where I could be picked up. Like, that was it. Case closed. And those challenges are just enormous.

Yes. We have to remain advocates. We have to do it on the talk about ADHD, make people understand that it's a very common diagnosis, very treatable, really positive outlook, lots of different, you know, lots more information out there and valid scientific evidence based information that really makes it, you know, possible to to in your local environment, on your your national level, we need to advocate. We need to get our message across, have it in the media and not have people stigmatize it and make it sound like we're only looking for medication and medicine is the the magic bullet.

We should all know better by now. Yeah. There was a recent news article which personally got removed, frankly, where it referred to the medication as slow release cocaine. Great.

There are still, unfortunately, people who look at only having that treatment option, and we should all know that, you know, multimodal, making sure you're balanced in life, that you're working towards your goal, sleeping well, getting all the support you need, that plus medication if your specialist, you know, advises it. You might have to try out different medications. You might take medication breaks now and then. It is all working towards this Yeah. And all care for the patient, you know, less care for the person. And all done with your specialist medical provider. You've always got to put in the disclaimer that no medical advice go to your specialist.

But, like, obviously, that understanding of what those choices look like is a really useful thing so that you can have a more informed conversation. You've been wonderful. We've got to move on. We've got New Zealand. Darren Bull from New Zealand's coming up. I need to say goodbye. Good luck. Good luck with your neighbors, the building work. I hope it doesn't last a long Yes. Sorry about that. It's. I did a prerecord with Rory of One Year No Beer. And they've never done it before, but a neighboring sports had a drum event. Like, kid you not. Oh. Full on drum event. It's just like Timing. Like, oh, you couldn't make it up. Have.

A great rest of your day. Thank you so much for being part of this. It's a big deal for us, and it makes I watch now. It's a wonderful thing. Okay. Bye bye.