This is a global player original podcast. Hello Katie, how are you? How are you doing? I'm doing well, I'm really excited.
This is the first episode of Series 3. Amazing, isn't it? Would you have ever thought we'd get this far? No, to be honest.
We've got AHD Sam. Come on now. We've done pretty well to get this far, don't you? Hi, unlikely.
We're starting this series with a fain-meaty topic, I think it's fair to say. It's a question that you and I've talked about a lot. Why are so many people being diagnosed with ADHD? It's a question that we face a lot, it's a question that you see out there in the media, it's a question that we've asked as well.
And when it's also an opinion that I get thrown back at me whenever I happen to reveal to people for the first time that I've got AHD. Everyone has an opinion these days, which is new as well, isn't it? But we've got a great guest to talk to about this. She's back.
Wonderful, Vicki George, who has joined us before. She's a clinical nurse who specializes in adult ADHD, and she joins us now. Hi Vicki. Hi, thank you for inviting me again.
Oh, thank you so much for joining us on the podcast today. We are wanting to get a snapshot, really, of how things look, because we know obviously things have changed a lot over the last few months and years, and we've really felt a sea change ourselves, even in the last six months, actually, of what other people's perceptions are of ADHD and what it means and what the diagnostic process is and whether it even exists. Everyone's got an opinion about that as well. What are you sensing in your clinic?
So obviously there's a huge increase in people seeking a diagnosis, and that's been obvious for the last, at least the last couple of years, probably a bit longer. I guess going back to kind of the pandemic, and I recognise that when I was working in the NHS, ADHD services as well, because our referrals doubled easily during the pandemic, and it just continued to increase since then. And obviously working in the private sector, it's not like, I don't recognise referrals slowing down as such, if anything, they're probably increasing. But because I went privately, I wonder whether that's to do with the lack of resources in the NHS, why we're seeing an increase in referrals, rather than an increase overall.
You mentioned the pandemic, and that certainly was a sort of touch point for me. Suddenly people's coping strategies, how they managed, how they perhaps have circumnavigated their ADHD symptoms, something that was all taken away, and it created a sort of pressure cooker. Do you think that was really the starting point to where we are now? Yeah, I think so, definitely, because even prior to that, and obviously I was working in mental health services, that's my background as a mental health nurse anyway, and occasionally I'll be making referrals into the ADHD service.
But knowing near, like they do now, it's like at the forefront of what primary care mental health nurses are doing all the time, it's screening for ADHD and more and more people coming forward. So one of the biggest reasons I suppose is the increase of awareness around ADHD, because social media, I guess people were using social media more during lockdown, and TikTok became a thing. So, and then massive platforms where people share their personal experiences and so on. So I think that has gotten a lot to do with it without a doubt.
I mean, you mentioned about people, their previous coping mechanisms that they had in place, and then lockdown happened and all that was taken away. But other people as well, like the kind of opposite way around that, like the stress of life was taken away and they were able to shut their mouths away in their houses and less responsibility, less expectation. And for the first time in their life, they actually felt quite calm, and then when life went back to normal, they started to question, why am I not coping? And, you know, trying to get back to where they were when they were in lockdown, but that's not reality.
This sudden, it's not sudden it's a gradual rise in diagnoses, has really fed into that conversation about whether or not we are over-diagnosing. What do you say to those people who claim that we are? So the problems already existed for these people that are coming forward to a diagnosis, but the awareness wasn't there, so it was put down to other things. So it's not that it's being over-diagnosed, it's just the fact that people recognise ADHD now, and especially how that presents in adults.
And so obviously those people, they've got an answer for it, and it makes sense to them. So of course they're going to come forward, whereas if that awareness wasn't there, they would just continue to struggle. It's not that the problems were there in the first place. What about self-diagnosis?
Because I'm a big believer that when people come to, if they go through the stages, they'll have very difficult processes about getting diagnosed, generally speaking, they have a pretty good indication of where they are. They've often already self-diagnosed. Is there an issue around people self-diagnosing? Do you think that is a self-diagnosis valid as a formal diagnosis?
And would you say that someone who self-diagnoses needs to then necessarily go after treatment? I would say that they would necessarily need to be formally diagnosed if self-diagnosing is beneficial to their enemies or by identifying themselves in that way. Because if they really relate to ADHD symptoms and those difficulties, then there's no harm in reaching out that ever support coaching or strategies that might be recommended for somebody of ADHD. Because if it helps them, why not?
But obviously for a lot of people, the reason why they self-diagnosed is, like you said, it's the difficulties of actually getting a formal diagnosis. It's a kind of controversial, isn't it? It is. There's one aspect of it.
It's not that bothers me. Sam and I talked about this before. That sort of sliding scale of whatever ADHD is and the point at which you get a diagnosis, because clearly it's affecting your life and it's debilitating and it could be causing really serious problems, is there a risk that there are people who are experiencing a sort of lesser version of ADHD? I'm going to sound like somebody who's opinion I hate.
So forgive me for this. People's advocate. Yeah, exactly. Somebody who is mildly affected by mild ADHD, who gets a diagnosis and then gets medicated, who doesn't really need it.
Does that happen? It shouldn't happen. I don't know. I've never had anybody come for an assessment in the NHS or work in private day.
That doesn't present with difficulties, because why would they come for a diagnosis anyway? But I guess, you know, then it's assessing or, you know, kind of discussing with that person, you know, when you talk about my ward or, you know, reason mild, moderate or severe, in theory, if somebody symptoms are my ward, they shouldn't have access to medication. It shouldn't warrant that. And actually, you should be looking at other strategies.
Did not know that. Didn't know that. OK, but there is a sort of, there is a version of the diagnosis, though, which is mild ADHD. You might get a diagnosis from our day.
Yeah, so it's mild in PEM and from ADHD. Yeah, definitely. And yeah, they should be looking at other strategies. It might be considered mild because of the environmental structure that they have in place, or there is such a thing as partial remission of symptoms.
So, obviously, they would have had ADHD in childhoods, and it might be actually, as they get older, their symptoms become less in certain areas of their life. And it all depends on, you know, the kind of environment that they're in, and that structure they've got around them. Yeah, the strategies that Sam has put in place in order to lessen your symptoms, have you done? You've had to cope without the meds, and that's essentially...
Yeah, and we've talked before about how, actually, if you think you've got ADHD and you are waiting, you can access support, and it's right to put strategies in place and access support, whether you've got formal diagnosis or not. There is a cultural element to this, isn't there, which is that we live in a culture which is incredibly pressurized for so many people, and the standards that are set for most people. I'm generalising, but I think this is a sort of general cultural feeling, is that you need to be on time, and you need to work hard, and all these things which ADHD is often set up as the opposite of. And so, yes, it's brilliant that we're raising awareness about it, but there are obviously some courses who are questioning, is this just an excuse for laziness.
How would you combat that? It's a very difficult thing to combat, isn't it? Because it's the area of society, and actually it is one of the things that I truly see and believe in that, if that wasn't the case, and we weren't governed by all of these norms in society and living and being a certain way, then ADHD probably wouldn't be classed as a disorder, if everybody in workplaces and education settings were more accepting and actually flexible or for different brain types, then it wouldn't be a problem, but that's too big of a problem. It's very difficult, isn't it?
Do I have to unpick that? That's a really interesting point, I wanted to ask a good about that, because it was something that struck me early on when we started this podcast, is that we talk about ADHD as a disorder, and actually it's a type of brain. Do you think we'll ever get to a point where almost ADHD doesn't exist, where you say there's some people who behave like this, there are some people who behave like that, there's one type of brain, there's another type of brain, rather than it being classed as something different, or do you think that's just impossible? No, I think it's definitely possible, and it's something that's across my mind, definitely, because I suppose it's similar in other ways as well, that actually we're much more accepting of different genders and sexuality, whereas that wasn't accepted years ago, and it was seen as something really wrong and shameful, if somebody wasn't following the norm.
It is, it is, it is, and it just like that that you describe, we have a, we have, you know, we have learned over the last few months that there are, you know, places where you never dream would have been inclusive workplaces like Schroeder's and Jupiter, these financial institutions that are setting up neurodiverse workplaces, and places for people to go and get information and find other friends within that workplace, because they are recognizing that those different kinds of brains are actually quite useful, because they think differently, and they bring in new ideas and different ways of thinking about a problem. I mean, I do think you, it's a word you use a lot, Sam, awareness. I do think this whole awareness thing that you talk about the key with regards to social media, to the fact that we're sitting here talking about this now, that the fact that yes, there's a lot of slating of ADHD in the press, but at least we're talking about it actually, and it means that it is a conversation that we are continuing to have, and I get a real sense that we are moving forward. I had a conversation with a woman I'd never met before the other day, talking about her older son, who's in his 30s, who has ADHD, and works outdoors, and we both agreed how clever of him to have found a job and a career, where it completely suits his ADHD, and I think that is going to be something that becomes easier and easier for each new generation that washes through, that sense of what suits us and our brains and what workplace will make the best of us, rather than trying to squeeze that into a box that doesn't fit.
Definitely, and that's where it needs to start, doesn't it, in those earlier gears? That's where the focus needs to be in education and making those changes, but also in children's mental health services or neurodevelopmental services, to educate the child, but also the parents and anybody else around them, to leave them in that direction. But obviously, we're not there yet, and people are still children and teenagers are still expected to fit into these boxes, and then it's just setting them up the wrong way to kind of progress through life, isn't it? And that's when the problem starts to occur, because they go down the wrong route and trying to force the cells to do something or fit somewhere that doesn't work for them, it's not getting the best out of them, but they're not aware of that, they need that guidance, every child does regardless of having ADHD.
And starting at a young age, which is a really interesting point, because I have some misgivings about this idea of changing the world to make it ADHD friendly, and Katie and I have talked about this before, only because we spoke to a doctor at the beginning of our last series, who was talking about, you know, you try and make the world ADHD friendly, but there are other needs and other requirements and other people with other issues, and you can never make everything perfect for everyone, but I think what you're highlighting there, Vicki, is just to get some way towards it, there's a big job to be done, there's a long way to go, there's a long way, it's not just about raising awareness in the media and saying, well, you know, even making access to ADHD treatment easy, but actually saying, we need to start at a young age, changing how we view ADHD in children and schools. Yeah, yeah, because at the moment it just feels like there's this huge battle between people who understand ADHD, people who have ADHD, and the people that, you know, just think it's being over diagnosed and doesn't exist, and it's like everybody's just at loggerheads, and it's just, it's frustrating, and it's working obviously in ADHD, and I have ADHD as well, it's probably the most frustrating part of my job because every single day, and I feel like I'm fighting other people's battles for them, or it feels impossible to be honest with you, but it's a daily occurrence where people are having difficulties getting an assessment, they're being kind of passed around in circles, there's no education out there, there's no post-linostics support, it's just really poor, it's not good. But in the future, I mean, in a perfect world, if there was perfect access to a diagnosis for ADHD, if everyone could go on tomorrow, do you expect to see a sort of leveling off of the numbers in due course? I mean, obviously, you've got new generations coming through and those are going to be new diagnosis, but in due course, we would level out at a percentage of society, and what percentage would you put that figure at?
So at the moment, it's believed to be three to four percent, isn't it, in adults, I mean, slightly higher in children, but I think it's probably double that. I feel it's bigger than that. Yeah, definitely. I feel it's more like 10%, I think it's kind of one in turn of us.
Yeah, I think you're right. But where do those statistics come from is what I always think? So that data is only kind of captured by, I guess the only way they can gather that data is by 3DNHS and on GP records. What about people that have obtained a diagnosis privately?
Is that data captured as well? I don't know. But also, there's heaps of people out there that aren't diagnosed, so it has to be higher than that. But eventually, I guess it will level out, but the prevalence is not to be higher.
It's not like we're just saying, oh, no, we've hit that 3D4 percent, therefore, no, we can't diagnose any more people because they can't possibly have it. But I do think it will level out. Definitely. I don't think it's being over diagnosed.
Yes, there's always a risk that people are being misdiagnosed with ADHD, but that's a risk with any condition, particularly when we're talking about say mental health and, for example, you can't just do blood tests that show it doesn't just show up in a blood test. So it's complex, it doesn't matter how experienced somebody is. People are complex. Everybody's different.
And there's many conditions out there. I feel quite strongly that personality disorder is overly diagnosed in the NHS and private sector, having worked in mental health services for years, and seeing that with my own eyes because they can't find another explanation. So it must be that. And there's no focus on that at all.
No. And isn't that interesting? And we don't talk about the overdiagnosis of depression. And the numbers of people who are medicated for that, the millions, the millions of people who are medicated for depression, it's just ADHD that takes the flag.
I find that so interesting. That is about changing a perception of what ADHD is, which is a conversation that's run through our entire work on this podcast, through every interview we've done, I think, from every guest we've spoken to. One of the reasons I wasn't diagnosed sooner was because I didn't necessarily meet what was the stereotype of ADHD. And I found the biggest way to increase awareness, the biggest way to perhaps change views is to tell the stories of how it actually affects people.
I have days, honestly, where I feel like I'm doing all right. And I think, is my ADHD that big a deal? And then we get floods of emails from people telling us about their experiences, about the struggles they've had, the real challenges they've had in life because of their ADHD. And I think when you put it in terms of something which is impairing to such a great degree, you realize the cost but told to challenge your ADHD.
And that's when you start to say, this isn't just about people being a bit lazy or being forgetful. This is actually about real day-to-day struggles. And I think those stories are the ones that chase people's views. And I have wondered whether we live in an ADHD bubble, but actually, I don't think we do.
Because if you ever thought about this, I sometimes think, do I just see the ADHD stories? Do I just notice ADHD in everyone? Maybe it's not as big a deal. But one of the things I've noticed is that when you mention it to someone else, they now have a frame of reference.
So in the past, you might mention ADHD and people say, what's that? What is that thing that boys have at school? People have a view of ADHD now. And I think that is where you know that there is a wider perception of it.
Isn't that just because it just gets a terrible slagging off of the papers and that's why they're picking up all their information? Not necessarily. I think there is some... Look, it's a story as journalists.
It's a story at the moment. There's a rise. There is a rise in a particular condition which is being diagnosed. It affects people of all different ages.
There's not the NHS provision there. That's a new story. And people are picking it up. But it is being treated in different ways.
There are some people clearly who've gotten an agenda. But there are lots of places I think doing good work and quite responsible work as well. Yeah. Just listening to you say that as well.
And just another concept that kind of works to think about that. So when you brought a new car in the pass, you might not relate to this. But I sit and you do. And I think most people do.
And you know, you've fallen in another car and all of a sudden everybody's got that car and you start seeing it everywhere. He didn't anywhere at all. Yeah. My husband and I always talk about, oh, everyone's pregnant.
Whenever it happens. Because I remember when I first got pregnant, everybody said, or whenever you have a problem, everyone else has that. And it's just that you're seeing it for the first time and you didn't see it before. Yeah.
You were looking out for it. Yeah. And it's the same with yellow cars. And I've read that somewhere in kind of something to do with ADHD as well.
And if you play the yellow car game when you're on the motorway with the kids, which I do just keep answering. And I'm supposed to be a 50-p for every yellow car. I've said in this yellow car's everywhere. And it's like a really unpopped for the car generally.
Sorry to quote you, but let's be honest. Also, let's be honest, we ADHD is like to hang around other ADHDers. So it does feel like the numbers of my friends, the number of my friends who have listened to Simon and I chatting and have then messaged me privately and gone, well, I think I might have ADHD. And I think, yeah, you have.
But that's kind of why we clicked and why we get on. You know, there's definitely a bird of a feather thing that goes on with neurodiversity in general, isn't there? Not just ADHD, but the kind of indie gang likes to hang out together. And that's a good thing.
You know, it's a good thing that we sort of we see ourselves in each other. And, you know, so it is again, then very, very easy to feel that everyone has ADHD. I have to say, my kids are sick of me talking about it. And, you know, and my son will say to me, you know, just not everything is to do with anything.
Not everything. And I get it. I mean, we've talked about raising awareness, but the next step is then about making sure that the treatment is there and you're well placed having worked in the NHS and mental health services to look at what's going on. You've talked about raising awareness and changing how we approach ADHD amongst children.
What needs to happen? It's a big question, but what needs to happen in terms of the services that are available in terms of actually making sure that people can get the treatment they need? I mean, my opinion of what should happen is very different to the reality to be honest with you. And I, this feels really negative conversation to have, but I just think it's too big a problem for that to be an easy quick fix.
I know we've got this task force, haven't they? And that's, you know, head a lot about that. And it'll be really interesting to see what comes off that. And I'm glad to kind of hear that there's really passionate people in amongst that as well, because I think that is kids.
Yes. Yes. It feels like it feels like there are at least some decent voices on that task. Yeah, definitely.
One of my biggest bad bears is there's this kind of culture in, I don't want it to come across as if I'm kind of bad-mouthed in HS services at all, because I really respect them and there's some amazing nurses, consultants in the NHS, but there does seem to be a bit of a very kind of herd mentality and a bit of culture, you know, in terms of, I guess, reasons why people can't get a referral is because it's down to those people, reading those referrals to decide how worthy some of the years of an assessment, how bad their symptoms are, how much impairment is there without even meeting them and talking to that person. And that really is just so uncomfortable to me. So so many people are declined on the basis that, or you know, you're managing, you've got a really good job, you've been successful, you've coped in school, but they don't stop to think about how that person coped or, you know, did they just get by because of their IQ, but actually the problem is now existing to one in life, and you know, a complete stranger gets to decide how bad your symptoms are and how much it affects you. And they might not necessarily be on board with ADHD.
And if they're not on board with ADHD, they are your barrier to diagnosis. We hear this story a lot. We get messages, comments, emails. It sounds like what you're saying, Vicki, and I totally take your point.
You know, there are lots of people doing incredible work, but you're saying there needs to be a change in awareness within the medical profession. Yeah, yeah, massively. And it is part of the reason why I stepped away, to be honest with you, because I just felt completely, it's too big a battle to fight on my own. And it shouldn't be a battle when you're working in a team or a team or a NHS trust.
But I felt that there was only a few people that were thinking along the same lines as me, and I can't be part of that mentality. I tend to go in the opposite direction. So as somebody who was at the cold face, what would you change? What's the one thing that you would shift within the culture of the NHS that would help people with actually?
Really good question. I don't know if I can answer on the spot. It's such a huge beast. What about the diagnosis process for ADHD?
What about the process of getting referred, getting a diagnosis, and getting treated? How could that be made easier? I think it should be a simple asset GP being able to send a referral into the ADHD service, or people being able to have the option of going, or some people have got the option to go private day, but it causes some complications, the down the line of the GP is on board. But quite often, what happens is that people go to their GP and then get referred to the mental health nurse or mental health services.
So they just get passed around the house is quite a lot, so it should just be really, it's not complicated for the GP to make that referral for that person. And I think that it's the fact that they are getting passed here and everywhere. It's not that simple, or some people it is really simple, but then everyone might get declined because it's not enough information. So obviously the reality is they don't have the resources to pick up the same type of person.
There's not quite enough information on your referral. Can I just take a bit more over the phone and get better? I do, you know, and take that information from them rather than bouncing it back to the GP. And then the GP probably doesn't get in contact with that person.
You know, the person using the referral contact with GP in two months time to say, did you send my referral and then that only got kind two months ago. And they start all over again. Yeah, nightmare. And it's like a connectivity and understanding of how the information gets shared or what's even needed.
And I think I do think to a large extent, a lot of the pressure falls on the person with ADHD to provide that information, obviously, but also to kind of kick the momentum forward. And obviously, ADHD is the last person you should be asking to do that. Because if you're giving them a deadline or a list of information or a lot of paperwork to fill in, that is also a headache. There are so many gates at the moment for people to get through in order to get a diagnosis.
And it makes it virtually impossible for an individual to get through that. Yeah, it really does. And that's sadly, that is the mentality that we're advocating because they're finding ways to reduce the waiting times. But what's happening is actually the way that they find it and doing that is wrong.
It's kicking the can down the road, not getting diagnosis, but just how can we not be looking at it from the point of view of the health service. You could say, I think it's probably right to say, suddenly there has been an explosion in people seeking a diagnosis. They've suddenly pulled up this rock and found there's a bit of a mess in terms of the service and provision. And in Venice, they set up a task force to try and sort that out.
So are you positive that actually all the conversation we're having today is being had and there's a real will to change things? I think there is a will to change things, definitely. Not my everybody, but certainly hopefully by the right people within that task force. But I'm just struggling to, I think about it all the time because of people that contact me with, you know, telling me their stories and their frustrations and asking for advice.
But I just can't see in my head how at the moment. Obviously it'd be interesting to see what happens. But I just feel it's such a big problem. I think how are they going to go about that?
And I'm always trying to work out in my head. Yeah, it feels like, well, I mean, we know, don't we? We've still got such a long way to go, haven't we? But at least we are.
The three of us are sitting here having this conversation and we know things are changing. There is now a task force. You know, we just have to keep our faith in what that brings and hope that maybe we can have this conversation into our months time and see where we stand then. And hopefully things will have moved forward a bit.
I have to say, I mean, I'm enormously optimistic. I always, I often am optimistic about how things are going. And I do feel things are changing, workplaces are more understanding. I know that the conversations I've had with some people who used to think ADHD didn't exist.
Their opinions have shifted and they are happy to say that they have shifted. You know, my, my, the older generation of my family, for instance, who have very skeptical in the beginning. And so I think we just have to remain positive. And it's a long term plan.
It is. And we're in. It's a very early day course. And it's a big issue as you've identified, there's lots there that needs to be sorted out.
It's probably worth just to close, actually, to say if someone's listening who thinks they've got ADHD, what should they do? Well, obviously the German advice would be to go and speak to GP. But it's a, you know, kind of mix of experiences, isn't it? I think that people have.
But that is the starting point. And even though you shouldn't have to go armed with evidence of, you know, kind of why you feel you need to refer, or that is really important. I think because when people put on the spot, especially when you have ADHD and, you know, you've kind of worked yourself up for the appointment, it's really hard to get your words out, isn't it? And I think going, you know, with almost written notes, so this is why I think so that you don't miss anything.
And actually the GPS will make that referable. I don't think GP is always taught to the patients about this, but obviously there's the right to to choose pathway, which we'll both have you to have heard of, which isn't a easy or quick route either. But it is a quicker route than going down the NHS. So obviously there's lots of information online about right to choose, but not everybody is aware of it at all.
So I think it's really important to ask the GP about right to choose if you're waiting this in your local area is like six years, it's quite sold to string, isn't it? And there is support and services available from people like ADHD UK, which you can access while you're waiting. I think it's been a really interesting discussion, I think it's a long way to go, but things are changing. So thank you so much for joining us today.
Thank you for having me. That's everything from us for today. You can listen to your wrong about ADHD for free on Global Player, download it from the app store or go to Global Player.com. See you next time.
This is a Global Player Original Podcast.