In this podcast we speak to Blandine French, ESRC DTC PhD student at The Institute of Mental Health Nottingham, looking into the awareness of ADHD in primary care. Blandine was also nominated for the 2020 ACAMH Awards Trainee of the Year.
In this fascinating interview Blandine discusses her research on understanding GPs awareness of developmental disorders, such as ADHD, and what the implications are of a lack of awareness within primary care, and its impact for young people and their families.
Blandine, who was diagnosed with ADHD in adulthood, talks about why early diagnosis and intervention are so important for children and young people with developmental disorders, and the implications if it is not recognised, plus the positives support when it all goes well.
Bladine explains about a free psycho-education online tool she has developed for understanding ADHD and the role of the GP in the diagnosis pathway.
Blandine has worked with parents of children with ADHD and adult patients for the last 6 years. She also received a diagnosis of ADHD as an adult which enabled her to go back to university to gain a degree in child psychology. Blandine’s main research interest in neurodevelopmental disorders, most specifically ADHD and Dyspraxia. Bio and image via The Institute of Mental Health Nottingham
Evaluation of a Web-Based ADHD Awareness Training in Primary Care: Pilot Randomized Controlled Trial With Nested Interviews (JMIR Med Educ 2020;6(2):e19871) doi: 10.2196/19871
Development and evaluation of an online education tool on attention deficit hyperactivity disorder for general practitioners: the important contribution of co-production (BMC Family Practice (2020) 21:224) doi.org/10.1186/s12875-020-01289-5
Awareness of ADHD in primary care: stakeholder perspectives (BMC Family Practice (2020) 21:45) doi.org/10.1186/s12875-020-01112-1
Barriers and facilitators to understanding of ADHD in primary care: a mixed‑method systematic review (European Child & Adolescent Psychiatry Nov 2018) doi.org/10.1007/s00787-018-1256-3
Interviewer: Hello, welcome to the In Conversation podcast series for the Association for Child and Adolescent Mental Health, or ACAMH for short. I’m Jo Carlowe, a freelance journalist with a specialism in psychology. Today I’m interviewing PhD student, Blandine French, of the University of Nottingham. Blandine received a high commendation at the ACAMH 2020 Awards and is currently researching ADHD awareness in primary care. If you’re a fan of our In Conversation series, please subscribe on iTunes or your preferred streaming platform. Let us know how we did with a rating or review and do share with friends and colleagues. Blandine, thank you for joining me. Can you start with a brief introduction of who you are and what you do?
Blandine French: Yes, thank you. Thanks for having me, Jo. I’m Blandine. I’m a PhD student at the University of Nottingham, as you said, and I’m a mum of two little ones. I have a lot of background with ADHD. As well as being a researcher, I also help parents and adults through peer support groups.
Interviewer: Do you mind telling me something about your personal journey with ADHD?
Blandine French: Yes, sure. So, yes, on top of being a researcher and helping parents as well, I also have ADHD of inattentive type. I was diagnosed ten years ago when I was 29 when I moved to Australia where ADHD is much better understood there, and getting a diagnosis really opened many doors for me because once I understood what I struggled with, I could put things in place to change things, to make my life easier, and I could consider going back to higher education. So after receiving a diagnosis, I did my bachelor’s degree in childhood psychology, which led me to do the PhD now, and getting my diagnosis also led me to facilitate groups for adults and parents to support them through these really complex diagnoses journey.
Interviewer: I’m going to ask you a bit more later about your own experience of diagnosis, but your research, that focuses on understanding GPs awareness of attention deficit hyperactive disorder, ADHD, what did you find? Do GPs have a good awareness around developmental disorders, such as ADHD?
Blandine French: In our research, we found a lot of GPs didn’t have an accurate awareness of developmental disorders, such as ADHD. We found that developmental disorders are not part of the mandatory curriculum for GPs. So what happened is that a lot of GPs received no training whatsoever by the time that they qualified. In our study, for instance, with over 150 GPs, 68 percent had received no training at all on developmental disorders. And developmental disorders are really complex and are really hard to identify in practise. It’s not like you can do a blood test and it shows you exactly that you have autism or ADHD or dyspraxia. So it is really important that they are being trained to be able to spot the different symptoms and different way it is expressed in practise.
Interviewer: Were you shocked to find that most GPs then had never been taught about developmental disorders?
Blandine French: I kind of expected it because for years and years and years, I wasn’t diagnosed. For my personal experience, I wasn’t picked up at all. When I received my diagnosis in Australia, I did wonder why did I go under the radar for so many years? But I didn’t really expect the extent to which they have no training, you know how developmental disorders as a whole is not compulsory and is just an additional training that some GPs may wish to take part in or not. Yes, I found that quite shocking.
Interviewer: What are the implications of that then, this lack of awareness within primary care? What are the implications for young people and their families?
Blandine French: Well, the implications are twofold, really. First of all, GPs are gatekeepers to specialist services. So without GPs recognising the struggles and difficulties that families or children experience, the patients or the children cannot get a referral on. So GPs don’t have to diagnose ADHD. They don’t have to know a lot about it, or autism or dyspraxia, for instance. But they do need to have enough information to refer on. Otherwise it is impossible for parents or children to receive a diagnosis and to access treatment and to access care. In some places, these sometimes can go through the school and it differs, depending on where you are in England. In most of the time, GPs are the gatekeeper to these services, so that has definitely a strong impact if they don’t know how to recognise these disorders.
And the second thing is that what’s happening in the patients that we interviewed and the GPs from our research, which showed that a lot of parents and adult patients have to seek a diagnosis themselves, so they have to be struggling quite a lot and wondering, oh, gosh, what’s going on? Why is my child having so many difficulties? Or why am I having so many difficulties? And started looking it up online. Then start by asking your GP, I think my son has ADHD, could I get a referral? And this in itself has many implications because it means that the families have to understand ADHD to seek a diagnosis. So for families or patients who do not have any awareness of developmental disorders like I did when I grew up, I believed that ADHD was the very typical stereotype of the hyperactive boy bouncing off the walls. I would never associated with my struggles.
So if it means that I could only get a diagnosis by picking it up in myself first, then this is why I went undiagnosed for 30 years. If you tried to put it into context of physical health, if you had to wait until you identified yourself, what’s wrong with you? I think I have a broken leg; can you refer me to hospital? Then this is quite problematic.
Interviewer: If a child isn’t picked up with… or the parents aren’t aware of it, what might the child think is the matter?
Blandine French: Well, that’s the thing that usually children who are not identified with ADHD and parents tend to think that it’s their fault. The parents usually think that they’re doing something wrong. It’s questioning their parenting style. They don’t really understand what’s going on. And it’s the same for the children. I remember as a child, I did not understand why I struggled with certain things, while all my peers didn’t seem to be struggling. And obviously because there was no reason why I should be struggling, I just thought it was just me. I wasn’t trying hard enough; I wasn’t good enough; I was just lazy. There’s lots of implication about how it affects a child to understand why they are different. And a label doesn’t sort everything out, but it does help to explain that there are differences between how these children are.
Interviewer: You’ve touched on this already, but why is early diagnosis and intervention so important for children and young people with developmental disorders? And I’m wondering if you can talk a little bit about if you don’t get that support and it’s not recognised, what might happen? And also, if you do get that support when it all goes well, how much difference does it make?
Blandine French: Early diagnosis and access to care minimises future risks. And we know that patients with ADHD that are not supported, and are not receiving treatment, or are not diagnosed, have more chance of having depression or anxiety or losing their job or divorcing or having substance abuse. There are a lot of risks associated with unsupported ADHD, especially in later life. So the earlier we can put strategies in place to facilitate children and help them work with the difficulties, the more chance we have of lessening these risks later on in life.
Blandine French: So there is no typical trajectory per se. Sometimes, if you have the right support from your families, from your partners, this can make such a big difference and help you carry on and help you succeed, despite all of the other difficulties. However, from working with dozens and dozens of late diagnosed adults, I can tell you that there isn’t one adult that said that they didn’t wish they knew sooner. Sooner you know, the more opportunities open to you in terms of education and jobs and life coping strategies.
Interviewer: Blandine, let’s return to your research. You’ve developed a psycho-education online tool for understanding ADHD and the role of the GP in the diagnosis pathway. Can you tell us about this tool? How does it work?
Blandine French: This online tool is in the form of two modules. It takes about 40 minutes overall to watch both. And one is a general module about understanding ADHD and the other one describes the very specific role of the GPs. So as I mentioned before, GPs do not need to diagnose or treat ADHD per se. They just need to be able to identify it and refer on. So they need to understand the pathway process. And this is what the second module focuses on, exactly what do GPS need to do to facilitate this access to care.
And the first one is more generic and is accessible for anyone really, even teachers or parents. If you want to gain just a broad understanding of ADHD, you can just refer back to the first module. And this is why we did it like that, just so it was a lot more approachable for many different people. And it was co-developed with GPs, so we wanted to make sure that whatever we did was something that GPs wanted to engage with and had the right information, had the right format. And it included a lot of videos, both from patients talking about how ADHD affect them on a daily basis, but also from experts. We have research experts, we have psychiatrists, but also we have a GP, who has ADHD herself, who talks about how it affects her in a way that GPs can relate to.
Interviewer: Do you have a link that you can share for listeners who want to access the tool?
Blandine French: Yes, absolutely. It’s www.adhdinfo.org.uk
Interviewer: In a randomised controlled trial, you evaluated the efficiency of this learning tool, what did the trial find?
Blandine French: So we found out all the GPs that watch our training improved their knowledge about ADHD and it reduced their misconceptions, so the online tool aimed to both increase accurate knowledge and reduce the common stigmas around ADHD, and we found that it actually did that. It also improved their confidence, so we ask GPs how confident they were around dealing with ADHD and we found that their confidence significantly improved. And for me, the main finding is that it changed their attitude and their practise. So we interviewed GPS after taking part in a randomised controlled trial, and most of them said that they look at ADHD very differently. They have different attitudes and they have already referred on people that they probably wouldn’t have picked up before taking part in our study, which was great to hear.
Interviewer: What were the common misperceptions then that GPs had and what kind of things were they missing before?
Blandine French: So a lot of GPs thought, for instance, that ADHD was caused by bad parenting. Some GPs thought it could be controlled, that it’s something the child… it was just a behavioural problem and with the right parenting style, it could be sorted. Some GPs also still believed that it can outgrow ADHD and that adults don’t get it. So these kinds of misconceptions were still present, not as much as I expected, to be honest, but they were still there. People in general can have very negative views of ADHD. Somehow the ADHD label has a really negative connotations and…
Interviewer: And what about the more subtle clues, if you like, that somebody had ADHD, what kind of things were they missing?
Blandine French: So, for example, a lot of adults who struggle with ADHD when they haven’t been diagnosed will come to the GP with symptoms of depression and anxiety. So what we know is that untreated ADHD, by the time you reach adulthood, there’s so much anxiety, trying to understand the way you are different, trying to cope with your difficulties without knowing what it actually is. So very often, adults will come to the GPs feeling very down, just really struggling for many reasons, and they would be put on antidepressants or receive CBT. And this is what often GPs will experience. However, we know that these are a consequence of having untreated or undiagnosed ADHD. They are the most subtle cues that GPs will have experienced and patients will have experienced.
Interviewer: What are the plans for the online psycho-education tool? Is it being rolled out nationwide?
Blandine French: So the study was nationwide, so GPs from all over the country took part in our studies. The psycho-education tool has been endorsed by the Royal College of GPs, so it’s available in their mental health toolkit training programme and it is free to access, so anyone can access it and use it as much or as little as they want. There isn’t a rolling out process per se. It’s very difficult to reach out to all the GPs in this way. So it’s available and they can access it, but we can’t really roll it out.
Interviewer: What else needs to be done to improve awareness among primary care professionals in order to better support young people with developmental disorders and their families?
Blandine French: So we found targeting training really worked. It makes sense that if GPS did not receive training during their education, their GP training programme, then having any form of training is better. But the way we developed our intervention, which was co-produced with GPs and targeted at exactly what they needed to know, there was not any extra information that they didn’t need. And it was just really tailored to GPs’ need. We found that it worked really well.
So we’re looking into doing more GPs and GPs have asked, when we’ve asked for feedback on the intervention. GPs have said, have you got anything else? Have you got some on autism? Have you got some on other disorders? They is a strong need for that. So we are trying to carry on developing similar intervention with other mental health difficulties and developmental disorders because for the GPs understanding their role and understanding exactly what they need to do has a very strong impact. And we found that GPs, once they knew that their role was just in identification and in supporting, that nobody expected them to diagnose and to understand ADHD in depth, then it was it seemed a lot more accessible for them.
Finally, what would be fantastic would be that developmental disorders would be part of the GP curriculum. Ultimately, this is what would improve awareness and facilitate support for families.
Interviewer: Are you optimistic that that will happen?
Blandine French: I’m trying to make it happen. I don’t know how… It’s a very complex… obviously is quite difficult. You can’t just turn round and say, oh, can you please put that on the curriculum? But ultimately, I would like to carry on working in this field and make a case for the importance of including developmental disorders as part of the training and for it to be compulsory. I can only try. I don’t know if it will happen. I am hopeful and I can try. I will do my best, but we will see if that happens or not.
Interviewer: It sounds really important. You may have already partially answered this question, but I was going to ask you, what are the research projects that are coming up for you?
Blandine French: So I will be starting work on the project supporting parents after ADHD referrals. So what we know is that there is often quite a long wait because of services sometimes struggle. Once the GP refer on to secondary care services, parents can wait quite a few months sometimes. So we are developing an app to support parents while they are waiting for diagnosis and treatment. I am putting together a grant application to assess the economic cost of untreated and unsupported developmental disorders, and this is to establish and make a strong case for putting developmental disorders on the curriculum and commissioning these services better. I would also like in parallel to develop more training programmes, as I mentioned, for the mental health conditions.
Interviewer: Finally Blandine, what is your takeaway message for those listening to our conversation?
Blandine French: For me, knowledge is power. From a personal as well as a professional point of view, understanding what you’re dealing with is very important. And once you know what your difficulties are, you can put things in place. You can accommodate things around your difficulties, make changes, minimise stigmas. The more you understand what a condition, the better equipped you, both from an individual and a professional point of view. So, yes, that’s my take home message. If you don’t know, or you think you know, but you’re not too sure about a disorder or condition. A lot of people think they know what autism looks like; they know what ADHD looks like. But actually getting the accurate knowledge can change people’s life and I’m an example of that.
Interviewer: Thank you so much. For more details on Blandine French, please visit the ACAMH website, www.acamh.org and Twitter at ACAMH. ACAMH is spelled A C A M H. And don’t forget to follow us on iTunes or your preferred streaming platform. Let us know if you enjoyed the podcast with a rating or review and do you share with friends and colleagues.