Dr Blandine French Hi there. I’m Blandine,  and today I’m going to talk to you about the   pathway to care for ADHD, and what does it  look like. And just for a quick introduction,   I’m going to tell you a little bit about who I am.  I was diagnosed with ADHD when I was an adult and   my diagnosis allowed me to go to university,  get a degree, and eventually get a PhD.   My research specialises in neurodevelopmental  disorders, especially ADHD and autism.   I come from an ADHD family, and I also facilitate  peer support groups for parents of children with   neurodiversities and adults with ADHD. So, my  experience of ADHD comes from three different,   kind of, hats, you know, I’ve got clinical  experience, but lived experience as well,   but it’s also my – the research topic  that I spend most of my days looking into. So, we’re going to talk about pathway to care  for ADHD. There is no typical pathway to care for   ADHD. The pathway to care changes considerably,  depending on where you live, where you’re from,   and even in the same country  can look very different. But,   broadly speaking, it often starts with an enquiry,  either from the school or from the parents, or   from an adult, and then there’s some information  gathering, again, this can be done by the school,   this can be done by healthcare professionals,  and eventually, a referral will be sent through   to healthcare professionals, usually in different  services, and then, from this referral, you will   get a diagnosis, in the diagnosis you will get  treatment, and then you have post-care support. Now, I didn’t put any specifics on there,  ‘cause this is what it generally looks like,   but as I said, it’s very different to  – depending on where you come from. So,   for example, in the UK – I am based in the UK,  so I will give you the example of the UK, which   different countries have got similar pathway  to care. But you will tend to make an enquiry   to the GP, sometimes to the school, but  most of the time it will get – be the GP,   the General Practitioner or the Family Doctor,  that starts the referral process. Sometimes they   will gather information themselves and ask  for the school to fill up some paperwork,   ask for the parents to fill up some  paperwork, and then they will do a referral. So, this happens all in primary care, and  then the referral is sent to secondary and   tertiary care. So, this is where patients  will get a diagnosis in specialist services,   and they will initiate treatment, and sometimes,  in the UK, their GP will take over the treatment   option. So, if treatment is medication,  the GP will often take over the treatment,   if there is a shared care – what we call a shared  care agreement. So, this – again, while this is   an example of the UK pathway to care, it doesn’t  work like that everywhere in UK. So depending on   where you live, depending on, you know, if you’re  an adult or a child, it might look very different. And many different stakeholders are involved in  an ADHD diagnosis. So, it involves healthcare   professionals, educational professionals, and  families. So there’s loads of communications   between all the different people, and in terms  of healthcare professionals, I mean, this will   be the focus of this talk, is it, again, it can  involve loads of different people. There is a   primary care level, a secondary and tertiary care  level, and this can be General Practitioners, or   they can be called Physicians or Family  Doctors, depending on where you live,   Paediatricians, so sometimes Paediatricians  at the primary care level, sometimes they are   the secondary care level, the same for Nurses,  and then the specialists who tend to diagnose   ADHD involve a team of sometimes Psychiatrists,  sometimes Psychologists, sometimes Neurologists,   sometimes Nurse Practitioners. So, it’s  quite difficult to have a very precise   way of how the pathway looks, and it’s complex,  and it differs widely across the world,   and it differs widely within countries,  and it involves many different people. A recent study by Fridman et al showed that  – the different timeframe once a patient is   referred for an ADHD diagnosis all across Europe.  So, this graph shows the time from first noticing   the symptoms to formal ADHD diagnosis, to the  time of first – and also the time from first   Doctor visit to an ADHD diagnosis. And in the  UK we can see that this is the longest time from   first seeing a GP to getting a diagnosis, and  Sweden, in this specific study, are the longest   from first noticing the symptoms to getting  a diagnosis, with 42 months, which is huge.  There is an issue in the delay, you know,  why do some countries have delays and some   others have less? What happens, where is this  delay in terms of accessing care, you know,   where in the pathway to care is the issue,  and what slows down the process of diagnosis? We know that the pathway to care is  affected by many different factors,   and that includes treatment as well.  So, it can be due to a lack of services,   services being oversubscribed,  being, you know, there’s not enough   path to do them – to do the diagnosis or to  follow through with treatment. There is, you know,   the complexity of all the different people  that are involved in the pathway to care,   it makes that it’s quite difficult to understand  where you get a referral from. Sometimes you can   get it – most of the time you get it through  your GP, for example, but sometimes you get it   through your Teachers, sometimes you can even  self-refer, and this creates a lot of muddled   understanding about what the pathway looks like  and what parents need to do for their children. And it’s the same for treatments. There are  different treatments that are recommended   for ADHD, and depending on where you live,  depending on, you know, which way you go,   you will receive different treatment options. The  waiting lists, as we’ve seen in the graph before,   are usually very long, and that’s across  the world. The wait time to get an ADHD   diagnosis is usually quite long, but all  that depends on so many different factors. Now, one of the factors that we will be looking  at today and that is also very important,   is the training of healthcare professionals,  and how – and the understanding of ADHD within   healthcare professionals impact this pathway  to care. So, this is one of the factor that   really plays a role into how quickly you  are where you’re going to get a diagnosis. So, in terms of healthcare professional training,  we know that their level of understanding of ADHD   plays an important role in how well they can  identify it, how well they can diagnosis,   on how well they can treat it. So, I’m just  going to present to you a project that we did   with healthcare professionals. In this particular  project it was primary care professionals, so GPs,   on the understanding of ADHD, however,  a lot of the findings and a lot of the   topics of this research project can be  mapped onto other healthcare services,   such as Psychiatrists and Psychologist,  and so on and so forth. So, while this was   really limited to GPs, it relates to a lot  of stakeholder within the pathway to care. So, in this specific project we did four  different studies. We did a literature review of   the gaps in understanding ADHD in primary  care, then we did interviews with GPs,   with parents, with adult patients, with healthcare  professionals, to further understand those gaps   and try to highlight, you know, what was the  issue in identifying ADHD in primary care.   And from then we developed an online education  programme to try to improve GPs’ understanding   and awareness of ADHD and of its care pathway,  and we evaluated this programme for a randomised   controlled trial and interviews with GPs  to see whether it improved things or not. Through the literature review and the interviews,   we tried to identify where are the barriers  in accessing care, and this is what we found.   There was a lack of knowledge and training, and a  lot of misconceptions and stigmas. So, whether it   was the literature that has been published from  all over the world, you know, whether you lived   in America or in Afghanistan or in India, there  was a constant lack of training of primary care   professionals on ADHD. A lot of Doctors go through  their entire training without ever learning about   ADHD, which creates a lack of knowledge  and which creates a lot of misconceptions. There was a lack of edu – identifications,  so a lot of GPs never picked up   ADHD in their practice, and what it means is that   the diagnosis is always started – often started  by the patients themselves. So the patients have   to know a little bit about ADHD to ask for a  diagnosis and start this diagnosis process.   And as we’ve seen, there is loads of different  professionals involved in this process,   and often the GPs mentioned that it was  just very difficult to communicate. You   didn’t really know what happened; once a  referral was sent through, you had to get   info from – informations from the Teachers,  but sometimes they didn’t respond, and there   were just so many different things to take into  consideration that it just made it very difficult. And finally, the GPs mentioned that there was  a lack of resources and services. So, again,   while training on ADHD is not compulsory in many  countries, services are not also compulsory. So,   for example, again, I will give you an  example of the UK where this study was based,   adult services are not commissioned, it is not  – they’re not always available. So, depending on   where you live in the UK, you can have access  to an ADHD diagnosis as an adult, or not,   and this is completely by chance, and this was  a big problem for all healthcare professionals. So, what does it mean in practice, you know, this  lack of understanding, this lack of resources,   this difficulty in communications? It means  that the patients often have to initiate the   diagnosis themself, which is quite problematic.  They might be referred to the wrong service,   so if the GP doesn’t really kn – understand  ADHD they might refer to an autism pathway,   for example, which is very  different from the ADHD pathway. The different buyers along the pathway to  care means that the parents might just give   up. They might just find it too difficult to jump  through all these hoops, get all this information,   and this – you know, the lack of  resources, a lack of staff, means   months if not years of struggles for patients  and families just waiting for the process.   And while you’re waiting and while this is  happening, there’s a deterioration of mental   wellbeing and an increasing difficulty that  could have really long-term impact on patients. And this is a really interesting way of showing  the impact of untreated ADHD and the impact of   undiagnosed ADHD. Like, by the time it goes to  adulthood years and years of not being treated,   of not being picked up, not being identified  in a child, will often lead into very severe   depression. So, by the time an ADHD child has  struggled with his ADHD through the school years,   he will become an adult that will have often  very severe depression, and this, kind of, masks   the root issue, which is ADHD, and I thought  this comic really illustrated it very well. So, what can we do about  that, you know, how can we   address those gap and those issues  around pathway to care? Well,   we cannot really do anything about the lack  of services or the lack of resources, and   the difficulty in communicating between different  professionals. But we can try to address the lack   of knowledge and training by giving GPs training,  and hopefully, increasing identification.  So, what we did, we developed an online  psychoeducation programme with GPs. So, we spent   quite a lot of months working with GPs to develop  a programme that was really tailored for them,   that the GPs were happy to work with,  and we asked the GPs, “What do you need   to know? You know, what do you need to know  to identify ADHD in your practice better?”   And they had very specific needs and ideas about  what this training looked like, and in the end,   we produced a training with two modules, one,  generic about understanding ADHD and showing   the evidence-based knowledge that we have on  ADHD, you know, the brain correlates the risk   that we know are associated with it, and many  other informations like this. And then we had   another module that was focusing on the role  of the GP in the ADHD diagnosis in the UK. It was very concise, and it was in the form of  games, so it was quite interactive, and the GPs   really liked it. Just very brief information,  not too much that they will get bored and they   will disengage, but enough, they understood  better what ADHD looked like. Altogether,   the training was about 45 minutes. The GPs wanted  to hear about specialists and we found a GP with   an ADHD diagnosis who was able to relate ADHD  in terms of – that GPs could really understand. And what we found, and again, I think these  findings can be related to many other healthcare   professionals, is we found that the misconceptions  decreased. By understanding ADHD better, GPs   had a lot less misconceptions around the disorder,  the knowledge and confidence increased, so their   confidence in treating ADHD in their clinic,  their knowledge, their ability to just deal   with it within their ten-minutes window increased,  and their practice and int – attitude improved. So, through the interviews we found that many GPs  reported how it changed not only their practice,   that they were able to refer more people on to  services, or take on treatments more confidently,   but their attitude towards ADHD, which at  times could’ve been maybe sometimes negative,   changed as well. And here we have some  of the quotes of the GPs who took part,   and other healthcare professionals that, you  know, were involved in the study, and how it   improved after only a 45-minutes online training. So, this resource has been used many times over   and adopted by loads of British associations  as well as European associations, and it has   been endorsed by the Royal College of GP and is  currently being translated in three languages.   But the take home message from me is that, you  know, this is a very short 40-minutes training,   it is free and accessible online, and it really  improves pathway to care and benefit parents   and patients by changing practice and improving  GPs’ knowledge of ADHD. And this, you know,   relates to all the healthcare professionals,  within the pathway to care, you know, it’s not   just GPs, this is the format that can be adopted  in how to, you know, start improving access to   care for patients, and the delays that can be  seen in receiving treatment and getting help. Thank you very much. If you need to get in  touch about any details on pathway to care,   please feel free to contact me.