Why ADHD is real. Why we need to take it seriously (A science perspective)
Hello, and welcome. Absolutely wonderful. Can see you and can hear you. Can you see the slides Henry? Not as yet. We were going to do chitchat.
That's absolutely fine. We don't need to.
You can just throw me out throw me out. I'm on a lot, so like people are kind of used to me. No, like you heard me talk like, you're amazing. Oh, thank you Henry. Something that when we spoke about this, the passion and desire to make these points was so fervent from you. It was honestly, it was like a shining flame of wonderfulness and I warmed my soul. It was beautiful. Right, shall I share the slides? You'll get on with it because I know, I've seen the slides, you've got a lot to get through because you're here to make a point.
Thank you Henry. So welcome everybody, I'm Jessica Eccles and I work in an adult neurodevelopmental service diagnosing ADHD, autism and Tourette syndrome which frequently co occur together. I trained as a liaison psychiatry, so psychiatrist, so that's brain body connections. And I co lead in Sussex, the world's first neurodivergent brain body clinic. More about why in a minute. I also have a role, but I am not speaking on behalf of them. I am the chair of the Royal College of Psychiatry's neurodevelopmental psychiatry special interest group, which means I convene interested clinicians working in the ADHD autism and neurodevelopmental space in The UK, and we try and change education and policy and practice.
And I'm patron of a wonderful Sussex space, but now international charity called SEDS Connective and the Sussex charity ADHD Aware UK. So I'm going to talk to you to what Henry has been speaking about, which is basically how we find ourselves in a culture war. And I want to explain to you why I think those narratives are not well informed. I'm gonna talk you through what I consider to be the big idea about brain body connections in neurodivergence, a little bit about the flip side, and some reflections on typicality, and then I will thank and by saying thank you, and, and then we'll be followed by Sam. And I have to say I have the pleasure of diagnosing Sam, and you can watch that on channel for, Sam Thompson is that ADHD.
So I've explained who I am. So I'm a medical doctor, but I'm also a researcher. So I have a PhD, and I am a specialist in brain body links in ADHD and autism. So for me, in our very busy, very small NHS service, I am seeing adults, and I mainly see female patients or non binary patients. I mean, that might be because of being in Brighton, but I think it's also because these are the types of patients that are not diagnosed in childhood. Many of my patients have a substantial psychiatric history. They also have features that suggest that they might have dyslexia, dyspraxia, which is called developmental coordination disorder or dyscalculia, And, that may be things like difficulty learning to tie shoelaces, difficulty holding a knife and fork.
Difficulty learning to swim or drive, problems with reading and writing numbers. And often they have many many psychiatric diagnoses so things like eating disorder depression anxiety OCD they may have been diagnosed with emotionally unstable personality distort disorder there may be a query of bipolar or psychosis trauma, and complex PTSD. Many of them have body focused repetitive behaviors, and they often have a complex physical health history. And because our service is under such demand, we are often only seeing the most risky and the most unwell patients, and it is shocking to see how neurodevelopmental features in autism, ADHD, and in Tourette's, which we so rarely think about, interplay to shape risk profiles in mental health.
So what have we learned over the years from clinical practice and research? Basically what we think about neurodivergence what I learned at medical school about neurodivergence was probably very wrong, that basically what we thought of as a male condition, these gender ratios are probably one to one. Many key elements particularly in ADHD are not captured well by the diagnostic criteria. So as we all know ADHD is not really a deficit of attention, it a problem with switching attention, and people with ADHD often hyperfocus and struggle to maintain attention on more boring tasks. But the real thing is ADHD.
And this was kind of being debated as whether it should be in the original diagnostic criteria. It's really a problem of emotion regulation. Sorry. I'm battling a bit of a virus and also energy flux fluctuations. And co occurrence is the norm rather than the exception. So we know and estimates vary, but probably at least half of autistic people have ADHD and vice versa. So really when we're designing services, we must consider. Surely it would be more efficient to assess for both conditions at one time than have separate pathways. And basically, not only does ADHD co occur with other neurodevelopmental conditions.
But it does with certain physical and mental health issues. And although we may get stuck in arguments about, you know, is the population prevalence of ADHD four or five percent, what we know is that wherever there is complexity, wherever there is difficulty, wherever there is challenge, there is more likely to be neurodivergence. So the current over diagnosis narrative has really been at the fore this year on both sides of the pond, but here we we are surrounded, by articles saying that basically the number of people with chronic conditions is soaring. Are we less healthy than we used to be, or are we over diagnosing illness? Our ordinary life expectancies.
Experiences, bodily imperfections, and normal differences being unnecessary pathologized. One doctor argues just that, and that particular doctor has been all over the press. At the same time, in the same moment, our government is wondering our mental health conditions over diagnosed. So this over diagnosis narrative, which you could read about in the book about it, if you wanted to pay the money for it, suggests that modern medicine has created an over diagnosis epidemic where expanding diagnostic criteria and cultural expectations of pathologizing normal human variation that this is potentially causing more harm than good, and there is a general suggestion in this over diagnosis narrative that diagnoses like ADHD.
Are in fact a sick note for life. But what is really important is to notice where this is coming from. Is this coming from clinicians who are experts and trained in ADHD and doing research in ADHD space? No. It is coming from people who have observed ADHD, but are not necessarily specialists in it. And I'm going to talk you through why this might be wrong. So there is this idea, the central argument is that there that there is creep and also consideration of terms like mild ADHD. If you look in the diagnostic criteria, there is no severity specifier for ADHD. You either have it and you have it on the basis of a set of symptoms and characteristics and functional impairment, or you don't. There is no mild, moderate, or severe.
But research indicates that these increases are actually a correction of historical under diagnosis rather than over diagnosis, and we know that even if the general population prevalence of ADHD is five percent that we have only diagnosed and treating a fraction of that. We know that women and marginalized groups have been systemically missed in earlier diagnostic frameworks, and we know that the expansion of criteria may simply be capturing previously overlooked cases rather than pathologizing normal variation. The ADHD task force interim report categorically confirms that ADHD is underdiagnosed. What is true though is there is a terrible postcode lottery in terms of there is not currently equitable access to diagnosis.
So there we know that there's basically greater public awareness, ADHD the number two search term on the NHS website, second only to COVID, and that there is increased research and that what we really need to worry about is not whether four or five percent of the population have ADHD, whether it's four percent or five percent, but how we can help the people who have it and who are most disadvantaged and, we need targeted, focus and interventions. There is also in this over diagnosis narrative the idea that physical conditions such as long COVID my may in fact be psychological. We, if you wish, have a podcast on the ADHD well women's well-being podcast where we talk about the relationship between long COVID hypermobility and neurodivergent.
We've just published maybe last week or the week before the follow-up to this seminal paper in BMJ public health where we show that a demonstrable, so categorically demonstrable difference in physicality, the presence of flexible joints is linked to a thirty percent more, thirty percent greater chance of developing long COVID. So there is this idea that we shouldn't pathologize everyday life, but this this perspective actually may minimize genuine suffering and disability. Yes. There are elements of ADHD that everyone experiences, but not everyone experiences them almost all of the time. And research demonstrates that autism and ADHD diagnosis are a fact associated with significant improvements in quality of life, functioning, and esteem.
Having what is the purpose of labels? I was talking to a colleague, a friend who was a doctor about this, and they said, well, isn't you know, everyone's talking about neurodiversity. I said, are a doctor. You are a researcher. We need labels because we need labels in order to count things, and it is only by counting things that we can realize the scope and scale of a problem and do something to address it. And many individuals report that diagnosis actually provides crucial access to support services accommodations and self understanding that substantially improves their daily functioning and well-being. I have rarely if ever met a patient who said I wish you hadn't diagnosed me with ADHD.
So there is also in this over diagnosis narrative a question about, oh, should we even go looking for things? What will we find if we do and is this important? Extensive evidence supports the benefits of early intervention across the board. We know that outcomes are better if you get in early. Henry spoke about problems in schools, about problems in the criminal justice system. It is absolutely essential to identify people who need support. We know that late diagnosis is associated with lower quality of life, higher rates of mental health problems, and missed opportunities. And in this over diagnosis narrative, there is a suggestion that we're even taking it too far in things like cancer. But we know.
Screening programs are a most amazing public health initiative. They reduce mortality. They reduce morbidity, and I will go on to tell us why actually ADHD is associated with mortality. Then finally the last argument, the diagnostic labels are potentially harmful as, identity that people take on an illness identity, But we know and we talk to people, ADHD UK ambassadors, everyone attest to the fact that being diagnosed later in life actually provides profound relief, is a pathway to self acceptance and connection. And we know that adults receiving neurodevelopmental diagnosis report overwhelmingly positive impacts impacts. They my patients describe it as transformative, and the neurodiversity affirmative movement argues embracing.
These differences actually reduces stigma and promotes acceptance. So in further consideration, why might we need to take this over diagnosis narrative that is everywhere in the media particularly based on one book with such a pinch of salt? But this is being written by a doctor, a neurologist who is not a specialist in ADHD. We do know though that their specialism epilepsy is associated with significantly increased rates of neurodevelopmental conditions, and that is a interesting research condition. Why why why do epilepsy ADHD and autism coexist? We know that this is not the over diagnosis narrative is not including the voices of patients and lived experience, and that is absolutely crucial.
We know that the over diagnosis narrative may really be a servant of a political master. If you are saying that a problem doesn't exist, then you don't need to solve it. And this particular over diagnosis book is based on case studies. Case studies are yes. They are important clinical perspectives, but they are not robust research evidence. So following that, I want to tell you about the big idea. And we often think of ADHD as a neurotype, neurotribe, but and people say, oh, you know, you can't you can't say I look like I have ADHD, but actually the big idea is that mental health and physical health are completely intertwined and that the current false distinction holds back research and stigmatizes patients. And some of you will have seen.
On, on Instagram and other places the idea the idea of the ADHD walk, and I want to tell you why that might be. So this is, a list of conditions that are associated with my research interest, is joint hypermobility. Joint hypermobility is associated with so many things. Flat feet, you can do a lot about that with arch support. Soft stretchy skin, hernias, resistance to local anesthetics, thin papery scarring, Raynaud's phenomenon, a particular issue if you're taking stimulants, all sorts of gastro problems, reflux, gastritis, inflammatory and irritable bowel disease, problems with periods, problems with irritable bladder, problems with shortsightedness, squints, temporomandibular joint pain, clumsiness, proprioceptive.
Difficulties, that's the sense of difficulty about where you are in space, and brain fog. So this is what I'm talking about. This is hypermobility. This is showing you what is hypermobility. So sway back knees, being able to curl your fingers upwards. Sorry. My, screen is, trying to update, which we were told to make sure that it didn't, and then I tried not to, but there we go. So a child sitting in the w position being able to do a reverse yoga pose. These are all features of a difference in the body called joint hypermobility. Now you technically in order to get a joint hypermobility diagnosis, you need a physical examination, but these five questions if you answer two or more it's highly likely that you have joint hypermobility.
So can you now or could you ever place your hands flat on the floor without bending your knees? Can you now or could you ever bend your thumb to touch your forearm as a child? Did you amuse your friends by contorting your body into strange shapes, or could you do the splits as a child or teenager? Did your shoulder or kneecap dislocate on more than one occasion? Do you consider yourself double jointed If you don't score two or more, this is a bit like doing a COVID test and it being negative. Doesn't mean say you don't have COVID. If you don't score two or more, it doesn't mean you're not hypermobile. You're probably a man, and the diagnostic screening hasn't captured you.
But this is it means it's highly likely that you might be hypermobile. And being hypermobile is actually a red herring. It's just a sign of an underlying difference in the cling film that holds the body together, and that cling film is everywhere. And this difference in flexibility is in fact very common, and it can be advantageous. So Simone Biles, Michael Phelps, they both are hypermobile. They both have ADHD. They are both athletes in an absolute class of their own. But hypermobility, because it is a difference in the connective tissue that is everywhere in the body.
This is linked to a variety of medical issues, and they cross systems and involve both the body and the brain. And because they cross systems, they're in silos, and people don't join up the dots and think about them together. And one of the big problems is that there are so many acronyms associated with it and different diagnostic criteria through the years that I think frankly most doctors who don't have a PhD in hypermobility are confused. And I'm patron of seds connective, and they've done this graphic. There are so many acronyms used to describe hypermobility that it's frankly very confusing. And so you either have hypermobility and problems, symptomatic hypermobility, or you just have hypermobility.
And what tips someone from just having hypermobility into having problems, well, that's an area of research that really needs to be undertaken. So this this is a hypermobility spectrum, and it's a bit like the spiky profiles you might see in neurodivergence. One person may have some particular problems with dislocations, you know, where joints come in or nearly out of socket, problems with allergies, problems with pain, problems with fatigue, gut issues, problems of standing, so dizzy when you stand up, dizzy, light headed palpitations if you have a large meal, or have to feel like you lie down after a hot bath or a shower, headaches, anxiety, and every person is affected differently. We know that if you take a 100 people.
With panic disorder, seventy percent of them are hypermobile compared to less than twenty percent in the general population. We showed in the brains of people that hypermobile people have a different sized part of their brain involved in fear. That is the amygdala, and that they have small area involved in where you think you are in space and that their images look similar to those seen in ADHD and autism. We know that people, the vast majority of people with symptomatic hypermobility experience this problem with postural tachycardia syndrome. So the cling film in the body, which is where you get a heartbeat rise of more than 30 beats per minute on standing, this is where the cling film in the body means that the.
When you try and get blood back to the heart, might pool in your feet. You might even notice that you have pink or purple or dusky feet when you stand up or have a shower. That this, this means that the heart has to beat faster in order to maintain cardiac output to vital organs like the brain and the heart, and this means that, you, you get this massive fight or flight, nervous system response. And we showed that hypermobile children, kind of teenagers, are more likely to experience depression and anxiety at 18, and that was partly, explained by high heart rate. We showed that, there's this tug of war in the brain in terms of hypermobile, anxious people.
The the executive center of the brain, the frontal cortex is not reacting in the same way as that it should and that the emotional parts of the brain are overactive. This is a pattern seen in ADHD. We have shown that hypermobility is associated with all sorts of physical health all sorts of mental health problems and, fibromyalgia so chronic pain and MECFS chronic fatigue. We have shown that childhood ADHD and autistic traits are related to subsequent fatigue at 18 and that is because of your levels of inflammation age nine. As I said we mentioned that hypermobility is associated with increased risk of long COVID, and we know that long COVID seems to be overrepresented in neurodivergent people.
Now back in the day when I was first getting into hypermobility, I read these articles that said that hypermobility was associated with eating more chocolate and that you were maybe more anxious and that maybe eating more chocolate was a way of coping with anxiety. There was also an article saying that people with hypermobility were more likely to smoke and more likely to drink, and was this a way to cope with anxiety? Well, I wonder, is it a way to to self medicate and self regulate neurodivergence? So this Swedish, in Sweden they have great registries. They looked at all of the population in Sweden and found that if you had a hypermobility diagnosis you were seven times more likely to have an autism diagnosis.
Five times more likely to have an ADHD diagnosis, three times more likely to have a bipolar disorder diagnosis, and twice as likely to ever have attempted suicide. So what we did in 2022, oh, this is now being looked at 210,000 times. I didn't update the slides. We showed if you were neurodivergent, you were four times more likely to be hypermobile than the general population. That our neurodivergent group reported greater physical health symptoms, particularly, pain and difficulties with, the autonomic nervous system, and that hypermobility explains the link between neurodivergence and physical health problems. And as you can see here in our ADHD and autism group people assigned female at birth more than.
Nearly eighty percent of them hypermobile compared to twenty percent in the, comparison group. We have just, this is under review with the British Journal of Psychiatry at the moment. We have showed how in people with a diagnosis of bipolar nearly eighty five percent of them are screening positive for autism and neat for likely autism and nearly seventy percent for likely ADHD. I told you that in the Swedish data, there was a link between hypermobility and bipolar. We put this all together, and it seems that there is this brain body link in that having flexible joints as difference in connective tissue is related to mental health problems like bipolar because of ADHD and autism. We have done this and this is my new PhD student pharmacist.
Nick Nicolette led this really groundbreaking piece of work in our trust that was published in the BJ psych bulletin. They looked at people with first episode psychosis. We looked at people with first episode psychosis and found that forty percent of them forty percent of them were likely neurodivergent and that the likely neurodivergent patients with first episode psychosis unfortunately required twice as long in hospital that they, experienced the onset of psychotic symptoms ten years earlier. Now if ever there is a rationale for getting in and identifying, people who are at risk of psychosis, then finding and managing and supporting ADHD would be a really good way to go.
We just are gonna present this next month at, the Royal College of Psychiatry's eating disorders conference. We looked at three thousand five hundred 18 year olds in the lspat birth cohort, so that's all the children born in Bristol and Avon in the nineteen nineties, and we see those with, probable eating disorder age 18 that this was related to autistic traits at age seven interacting with ADHD traits in the presence of joint hypermobility which can lead to, new gut problems and you can see that autism and ADHD converge to lead to the development of eating disorder. We've just looked at, people attending a and e in crisis in a mental health, mental health crisis and found that nearly.
Four fifths of them are likely autistic and even if we use the most conservative estimates of that screening measure at least half of those people are autistic and that there was a correlation between that and joint hypermobility. Unfortunately, we didn't look at ADHD, but I suspect if we look at ADHD, we would have found exactly the same. So do you remember I said that hypermobility was associated with an increased, likelihood of ADHD, autism, bipolar disorder, and attempted suicide. You must be thinking well, how do you get from having flexible joints to be more likely to attempt suicide? And this is the elephant in the room. Suicide is one of the leading causes of early death in neurodivergent people.
And, autistic people are at least seven times more likely to die by suicide. Psychosis doubles the risk of suicide. The rate of suicide in bipolar is twenty times greater than in the general population. Adults with a history of eating disorder are nearly five times more likely to attempt suicide. This study published this year shows that adults diagnosed with ADHD have shorter life expectancy that on average people with ADHD die nine years earlier. Now myself, in my college role and with my colleague doctor Ulrich Muller Sedgwick, we are part of the clinical reference group that feeds into the ADHD task force. We were in a meeting Henry was in fact in this meeting too where we were talking about ADHD and suicide.
I found that conversation really interesting obviously from a research perspective it's very hard to measure suicide. It is a rare event and most people who die by suicide do not fill in questionnaires before their death. So Ulrich and I were talking and we thought well could we look at self harm? So I sent this text to a friend and collaborator. So once a month, I have a really boring meeting. That's not the ADHD task force meeting. I mainly zo out zone out and do some stats instead. Yesterday, I was in an interesting meeting for the ADHD task force looking at ADHD and suicide, so today in my boring meeting I decided to look into it in the birth cohort cohort. Wow autism age seven predicts self harm at 18.
Because of ADHD traits and this effect is more than double in those with symptomatic hypermobility. Mind is slightly blown. So this is the diagram. So this is looking at three thousand four hundred 18 year olds. This is particularly looking at women, females so autistic traits h seven and ADHD traits interact for the presence of self harm 18 in with hypermobility. Now you might be thinking this is observational data. We've done some really interesting experimental medicine, and we looked at, people with pain and fatigue and people without pain and fatigue, and we look to see not at their genes. I don't think we're gonna find a single genetic cause for ADHD or for autism or for hypermobility. We do know they're heritable, but what we found.
Was, that there were, you know, interesting differences in things like mitochondria in the pain and fatigue group, but that the hypermobile group remember the difference in connective tissue that the the translation of the genes what that fingerprint looks like in the cell if we put that into a database to see what other conditions it looks like it looks like an autoimmune condition. It looks like, lupus. It looks like dermatitis. It looks like eczema, and then we throw in an inflammatory challenge, and we upregulate inflammatory pathways. It looks like ADHD. It looks like substance misuse. It looks like heart disease. It looks like bipolar disorder. So this is really suggesting that there is this gene environment interaction whereby a.
Bendy body and the environment and genetics all intersect to lead to, situations like ADHD and autism. So that's been a quite a heavy and, yeah, a heavy, roundup of the research that we're doing so I wanted to just make a note on strengths we I was approached and by a film director he made calendar girls and maiden dagnum and he said he thought the film industry and the creative industry was top heavy potentially with hypermobile neurodivergent types, and we found, we we wanted to see if this was the case in the general population, and we found that indeed hypermobility was linked to creativity because of ADHD traits because of neurodivergent characteristics.
We looked in we spoke to 10 people we did in-depth interviews and we found for them being neurodivergent was a means of expression it was a means of communication a means of creativity was a means of communication and hyper focus It was a means of, combating isolation and improving emotional regulation. Creativity was a means of thinking differently and a way of finding value. So why is it important to think body brain? Well, we know that nearly half of neurodivergent individuals feel that their treatment of mental or physical health symptoms is worse because they're neurodivergent.
Our involvement work tells us that people struggle for years to get an assessment and diagnosis for both mental and physical health problems. They feel a strong sense of being dismissed misbelieved or overlooked when interacting with professionals and institutions they repeatedly encounter poor understanding and few or no adjustments for their needs within healthcare and education and Why this is gonna be really interesting in the future is we have shown we published this a model linking emotional dysregulation in neurodivergent people to the proprioceptive impact of joint hypermobility Proprioception is a sense of where you are in space and we showed that having neurodivergent characteristics was associated with emotion difficulties.
Partly because of a sense of uncertainty where about where you are in space, and that effect was double in hypermobile people. Hypermobile people are more likely to experience coordination difficulties, and maybe improving proprioception may improve emotion regulation in neurodivergence. That's research that needs to be done. So we have articles coming out soon on bipolar eating disorder self harm and mental health crisis, and I just wanted to say a funny bit about spiky profiles. Everyone is different, and people are dynamically challenged at different points in their life. You struggle with socializing? No. After years of intensive study on things like body language, tone, facial expression, eye contact, and psychology.
Whilst also observing and copying my peers, I have created an adaptable script to follow. I am good at socializing. Can I socialize with large groups of people? Yes. Do I need bed rest from physical and mental exhaustion after socializing? Also, yes. I think this is how the biology, the brain body interacts with neurodivergent and pain and fatigue and masking. And now we all as doctors as clinicians as policymakers we need to look to ourselves. If you were in the gifted and talented program at your school in the nineties, how's your ADHD high functioning anxiety and perfectionist based procrastination going bonus if you're also the oldest daughter.
Kids who grew up academically gifted are now anxious adults who have thousands of abandoned hobbies and spiral into self hate whenever they make basic mistakes or they are doctors there is no in between we know that ADHD is as heritable as height I had the pleasure of representing the college in the BBC archive hour trouble staying still ADHD's identity crisis and in that, we interviewed my mother who is late diagnosed, ADHD diagnosed at 72. I'm just gonna I don't think you'll hear this so I'm just gonna stop that. So this is my mum. Wonder how I became articulate, bendy, and ADHD all at once. Listen to me interview my mum on BBC Radio for archive hour.
And this is my school report, which may be familiar to some of you in the room. I'm delighted that Jessica continues to enjoy life at school. She brings a lively intelligence and humor to every activity. This is about age 12. As some comments here suggest, she must resist any temptation to lose concentration or rely simply upon her native wit to see her through. My geography teacher, Jessica's originality borders on the eccentric. So from social media, it's crazy how if you get good grades, they just let you raw dog ADHD your whole life. So to the ADHD ADHD is out there. Strengths works well under pressure. Weaknesses doesn't work otherwise.
Shout out to everyone who simply cannot work at an even steady pace and instead facilitates between frenzied hyper work mode and near catatonic state of existential dread and avoidance. When the job requires creative problem solving, the ADHDs are summoned. We need creative solutions to a very serious crisis that we have in this country at the moment, and we need neurodivergent people to lead this and to help this, and I wish to say autism is a lifelong condition often characterized by an inability to bullshit, a pathological need for fairness, a compulsion to help others, an inexplicable need to expose hypocrisy, an excessive tendency to let other p people be. There is no known cure.
So there's been a huge amount of people who've been involved in the research that I'm presenting to you today, but I have to say a particular thank you to professor Kevin Davis and professor Hugo Critchley and Lisa Quote, and also to Sarah Garfinkel and doctor Charlotte Ray, and to Lisa Page and Nigel Cole who inspired the creativity project, and a big big thank you to Rebecca Dew at Sussex partnership who is our amazing nurse consultant, and, a huge thank you also to Jane Green from seds connective. So and all of the thousands and thousands of participants who have taken part in our research. Now if you want to find out more, please follow me on, Instagram, on blue sky, and I have lots of webinars and resources.
On Linktree bendy brain, Sed's connective have excellent resources for hypermobility and neurodivergence. If you're wondering about what to tell your GP about hypermobility, please do check out the EDS UK GP toolkit, and please look at bendy brain on YouTube. We hope to be launching the channel shortly. It's bendy brain doctor. Jessica Eccles, and I think that that is it Henry.
Absolutely extraordinary. You're both you and the presentation. Thank you and thank you well done for fighting through the the lurgy. Yeah. It's definitely going around. My family's all down except me. I've been very grateful for it. Not yet. We'll see tomorrow.
I think it will depend four hours of ADHD to your immune system.
Yeah. I know. Well, it could be it could be tricky. I've realized I put an echo on that thing. Right. We've got so many lovely comments, like really lovely comments, and, I'm going to, read some of them to you. I love the passion of this presentation. Another just saying, wow. Thank you for this incredible presentation, so passionately presented. Those are scary statistics, and you've talked about how to get involved, how do we support someone just written, wow, thank you. And I just wanted you to see, to tell you those, because it's a big deal. Right, I've got a question for you. You're casually in one of those high to do places that you hang out where shooting gets in the lift with you. What do you say?
That ADHD and autism are one of the public health crises of a generation in that if we could intervene early and support neurodivergent people, we could improve the educational, the social, the physical, and mental health trajectories of at least two children in every classroom of, of a vast number of the of the workforce that we could improve the lives of so many people. And I genuinely think that if we join our heads together and we think about this in a creative way, that this can be done even within, you know, the idea that there is no more money tree. But we basically have to be prepared to rip up the status quo. What we have at the moment, the system that we have at the moment, the fact that at this time in June, there was more.
People than there are living in Manchester waiting for an ADHD and autism diagnosis in England. This cannot continue. We need to come up with creative solutions to ensure that these people get the support that they need in a timely way, that this is equitable, that their assessments are of quality, and that that we end the postcode lottery that exists.
And what would you say if he just says, we ADHD is not serious, and it's people it's just a path to benefits. People are just what would you say to him?
I would I I would say to him that, if he better understood ADHD or autism and the physical health associations, he would be able to recognize probably half of the people in outpatients departments in psychiatry, the majority of the people attending a and e, the majority of the people who are stuck in hospital, languishing inside rooms where doctors don't understand what is going on, that almost probably, you know, the top five presentations to GP practices are things like chronic pain, fatigue, stomach troubles that if they actually understood how all of this was interconnected this brain body type that we could target support and interventions to people and that this is basically and we've written a paper that's about to be published.
Called the elephant in the room neurodivergence in psychiatry. Everyone people are touching this situation, but they're not realizing that this is neurodivergent, so this is the brain body implications of neurodivergence. The other thing is that ADHD and autism are huge as I said at least one fifth of mental health team patients are autistic, probably forty percent of them have ADHD that is even higher for people on wards and in in hospitals and attending in crisis if we we must acknowledge and accept that neurodivergence is the elephant in the room. It is here. It is everywhere. It is everywhere where politicians should be interested, and we are not talking about it.
That's my where I'm at to the the idea that it's a route to benefits. It's the exact opposite. It's without support. There's huge medical costs for things that otherwise could be very differently, more successfully treated. There are economic damages that if people understood themselves they'd be able to frame their life in a way that they could succeed. And so what we're doing is we're in this situation where we are depriving people of support of the knowledge and self awareness of a diagnosis, the support it brings, and then blaming them for being broken.
No, and also the thing is as a psychiatrist who works in a neurodevelopmental service, I have the privilege of prescribing ADHD medicine to people who have a diagnosis. We've already discussed how difficult it is to get a diagnosis, but, it is a real ADHD medication is generally safe and effective. It is so it's much more satisfying for me to to treat ADHD, then I'm sure it is for most doctors handing out other medicines. The number needed to treat is incredibly small compared to other conditions. These are potentially life changing medicines, but because they are stimulants, there is a huge stigma around them, but they are they are generally safe. Yes. There there sometimes are some risks, but there are risks to antibiotics.
There are risks to all sorts of medicines that we use, and we need ADHD. People benefit so much from ADHD medicine. There was a study published in Sweden this year in the BMJ two hundred thousand people ADHD medicine reduced serious problems like suicide, like car accidents, like criminal justice issues by twenty percent across the board. You would really struggle to find in the history of psychiatry any intervention, you know, this is as good as if not better than any intervention that we have at our fingertips, but we need to make sure people get the access, and it's not just medicine. Of course, it's all of the other things. It's coaching. It's support. It's reasonable adjustments, but this is within our gift, this is within our remit.
We need to make sure that people get access to this.
We had a very careful dance that we had to do around the medication shortages. Because of the stigma around ADHD, we had to we had to talk to devastating.
There's medication shortages. I had so many patients who were who were whose lives were practically put on hold. GP surgeries and our service that were not in chaos, but, you know, the absolute disruption associated with that shortage, outrageous.
It's absolutely outrageous. Then your patients are fortunate they could talk to you and you were there trying to solve that for them. But for many, there was no one to talk to. Like in my personal case, I tried to talk to my local service and I was told, yeah, no problem. See you in two years.
But the problem is, Henry, the ADHD supply chain crisis is not over. We just keep switching. So we couldn't get, this dexamfetamine. So everyone was put on, Concerto. Didn't get Concerto. So everyone was put on Ecclesim and Mediconnect. Couldn't get Mediconnect. It's just absolutely it's terrible and no one's talking about it. No one's talking about it, and it's it's it's a political and health scandal and caused so much suffering and unnecessary work. I mean, all of the how many the amount of work that pharmacists have been doing trying to help people get drugs, people talking, you know, to their GP surgeries, to the neurodevelopmental services, it is so so unnecessary.
It is and it's made substantially more difficult by the way the system is set up. And so the ability is to change prescriptions, for example, only resting with you means that you find yourself, well, it would be incredibly hard to meet the meet the need.
No. It's a start. We have to think what other conditions would this be allowed to happen to. Unfortunately, it happens to mental health conditions a lot. There are shortages of other mental health medications. And and also, you know, why are there waiting times for physical health conditions, but there aren't for mental health conditions and ADHD and autism in the same way?
Well, it's good of you to queue that up because we will be discussing that as our final session with Doctor Tim Kendall, ex lead for, person the in charge of mental health for the entire NHS, and that is the absolute topic of discussion around the wait lists. But it is, like, I mean, the absolute limits of data on how long people are waiting. And, you know, we saw, for example, the task force report was delayed for just sat on the shelf for months and months and months as the interim one, and that was then released on the same day as the debate on assisted dying. Yeah, do think it was fairly covered by the press.
I.
Mean that's the for those that in the the noise, so that's the grid. So there's government runs a thing called the grid where it decides where to release things, worked on what prominence they want things to have. The ADHD task force was absolutely designed to be buried. Like, you don't release something, a medical report on the same day as the massive medical discussion on assisted dying unless you want it not to get coverage, that's which they frankly achieved. The final report was due in the summer. The summer ended, I think, on the September 22, I think it is. Someone will correct me if I've got that wrong. But we're now out of summer and into autumn. We're now told it's going be sometime in autumn. But, like, the the fact that.
And we know that it's been done. It's finished. It's and the fact that it's not not published is yeah. It's just it's just sad actually.
No. It's it's really sad because it is such an issue. And we've spoken about this, Henry. I actually thought the task task force report kind of laid out things in a way that I didn't expect it to be so, you know, clear. And we we we need we this we need this is the elephant in the room. Why is no one talking about it?
Well, you've done a great job this evening talking about it. And and also, really importantly, actually arming a lot of people to continue that conversation and to put that conversation to other people and put your points to other people and so that you have helped arm people for those discussions because that's what it is what's happening. We are being challenged with like it's just over diagnosis. It's not a big deal and you.
Yes. We a paper out last week in the British Journal of General Practice called over diagnosis or opportunity, and we lay out these points. So if you go to my link tree, subscribe to the YouTube. If you go to my link, well, you will find the paper and use that. Take it right to your MP.
Do you want to quick remind people where your Linktree, how to get a hold of you? So.
I'm at Linktree Bendy Brain. It's got all my papers. It's got all our webinars, and it's got the importantly the link to the new Bendy Brain YouTube channel.
Nice. Doctor Jessica Eccles, you are amazing. Thank you so much. Thank you for your time. Thank you for your incredible passion and advocacy for it is extraordinary. You're fantastic. And thank you for being part of the conference for your work here today. Thank you so much. And we have to say goodbye. Thank you, Henry. Bye bye.
