Getting an ADHD diagnosis...

This is a global player original podcast. Hello, I'm Katie Brethwick and I'm Sam Bittis and welcome to our new podcast, You're Wrong About ADHD. No, you are. No, you are.

No, you are. This is stupid. You stop it. Sam and I have been friends for nearly 20 years and a couple of years ago, we both found out we have ADHD.

But I think it's fair to say we feel very differently about this. Getting an ADHD diagnosis, answer lots of questions, but also raise new ones. Each week we're going to be talking about everything from our experiences being diagnosed as adults to relationships, coping strategies and how we manage these very special brains. So we can learn more about ADHD and what it means to be neurodivergent.

Alright Sam, how are you doing? Good to see you. Thank you. So I've been thinking quite a bit about diagnosis just in terms of how you and I had quite a different experience.

Very different. I've diagnosed this. Do you want to tell us a bit about what happened to you and how you came to it and what the actual process was of being diagnosed? Yeah, I definitely think I should tell mine because I think mine is quicker and actually more predictable than yours.

I think yours is more interesting of both of our diagnosis. I don't know how to do it. I don't know how to do it. It's actually just different.

Yeah, my diagnosis story is fairly typical for women, especially my age actually, who have seen a child or a family member go through the ADHD diagnostic process and along that journey had a light bulb moment of, oh god, hang on a minute, which is literally what happened to me sitting in on one of my kids having questions asked of them about whether they had difficulty with organisational tasks or whether they were messy or whether they struggled in school, difficult relationships with teachers, all of these things, all of these things. And each time my husband would turn to me and point to me and just go, I'm sitting at back as observers in this process. And I had always, I say always, what for the last maybe five years, I had a suspicion that maybe I had ADHD. I hadn't thought it was necessary to think about it too much, but it was only when we were sitting in that room and then the subsequent process of titration, medicating, and I saw how beneficial that was, that I thought, huh, maybe I should go through this process.

Maybe it might be worthwhile and actually maybe it's something I should do because if it turns out it wasn't worthwhile, then I just don't take the meds or whatever it is. They tell me what to do and back and square one. So who did you approach? I just issued you.

Back to the clinic that we've been to with one of my children and they laughed when I ran and said, Hi, yeah, I'm just going out because my kids gone through this process and I think I've got to and I think they were just so used to having that conversation with parents that they went, yeah, all right, we'll put you on the waiting list. And I feel incredibly fortunate because whenever that was 14, 16 months ago, there were still places on that waiting list to go on. It was a private clinic. It was a private clinic.

Absolutely. I've been told there'd be a two or three year waiting list for NHS two year waiting list for NHS diagnosis at that point. And so I felt it was important that I got it done. I have a lot of things going on in my life that I need to organise to function.

I've got parental responsibilities and brother with downs and all sorts of things. Kids, you know, husband, a job, you know, that was kind of the bottom of my list. I felt that actually if I get to grips with this and look at it and examine it, maybe it will help me handle all of those things. And so the diagnosis, the process was actually quite straightforward.

It was a question of going online for two consultations with two different psychiatrists at this clinic who I already trusted because they'd been so fantastic. Have you given them information prior to the appointments for you? Yeah, I had to fill in a question. So they set me a question now which I filled in and it was things like, do you have difficulties with organisation?

Tell us about school. Have you had mental health issues? Well, I haven't. Have you had issues with addiction?

No, but that's partly because there are issues with addiction in my family. Am I really, really careful about alcohol and all those sorts of things? Terribly controlling about it. So when I finally kind of got into the room as it were or on screen with a psychiatrist, it felt like a real wash and moment for me because I felt like finally they were asking the questions that someone should have asked me 30 years ago when I was a primary school.

And my second consultation in particular, which was with a doctor who told me herself at the beginning of the consultation that she has ADHD herself, was revelatory for me because it was almost like a former counsellor or coaching. She took me through that process and explained so many aspects of my behaviour to me whilst we were going through. Like, for instance, as you will know, I twiddle my hair all the time and it's something I do without thinking. She explained to me that that is something that helps shut off a part of the brain and quietens it down so I'm able to concentrate on things.

So it's why I do it. If I'm doing an exam, I will sit with an elbow on the table twiddling all the way through so I can concentrate. Or if I'm reading or if I'm listening, you know, if I'm sitting in the pub having a drink with a friend and having a really big, meaningful conversation, I will sit and... In your consultation, you had this kind of insight into what happened to you.

Absolutely. That seems like a really positive experience. It was. And that's not quite yours.

Well, no, because I wanted to ask how you felt about that. When you talked about how it felt like someone was asking these questions and I totally recognised that question you feel that should have been asked before. But did you just have a sense of relief? Almost like I've got the answer here.

This is what I've been looking for. I really did. You did that come immediately? Well, so at the end of my second consultation, she was kind enough to say, yes, you've got ADHD.

And obviously we'll be sending you a report and we'll be sending you a formal letter and, you know, then we need to start talking about what that means and how we treat you. And one of the lovely things that the very, very first consultant said to me, which I think is a really important thing to say actually, is yes, you might have ADHD, but you might find you don't want to treat it. You might find that's exactly how you want to be. And there's no need to change in the world in which you live and in which you operate.

So don't ever feel pressure to medicate if you are coping just fine. And I thought that was a very lovely, very open, generous thing to say as in. There's no pressure here to take any of the medication that we are now, subsequent to offer you. But that diagnosis for me was huge.

And there was a real process for me of going back and making sense of so much of, especially my childhood, actually, the ability to go back and look at those really, really difficult times at school, you know, when I got chucked out of the school orchestra or I left school after one year, or the many teachers who found me disruptive and annoying and would rather I was in someone else's class, sent me out, made me sit outside the headmistress's classroom for the opening time, knowing I was unpopular in the staff room. Not wanting to be, I didn't want to be unpopular. I wanted to be a good girl. I didn't know how to do that.

And I was aware that being what they wanted me to be meant crushing so much of my personality. And also that's been an experience in my adult life with some friendships as well. Did you feel that your diagnosis gave you this answer? It sounds very like it's been written on the wall somewhere.

I'm going to buy it in a shop. Come on, Sam. I'm sorry for Americanism, but did you feel like your diagnosis allowed you to be you? I do.

And actually, I think my husband probably said that it's unleashed me and from where it's kind of unfettered. I do think... Exactly what I do. I really don't think it is.

I do. I've definitely lent into it since the diagnosis. I've definitely sometimes found myself thinking, well, sort that. That's my initially.

If you don't like it, you can lump it. I'm not sure that's necessarily... How's it going? Do you know what?

I've not got so many competing thoughts about this situation that's arisen. Because I know what it is. I know that I've forgotten something or there's been a crisis in action. I know the cause of it isn't it?

Yeah. And my husband has always been very kind and very generous and very loyal. And he has been even more so since the diagnosis. He has been the one on a few occasions to point out to me why I find certain things easier now.

Because I happen to have taken a flipping tablet that morning and he'll go, well, look at that. You just did that so much more quickly than you did last year when you had the same task to do because you took that tablet this morning. And then there is that little twinge of, God, I've had 50 years of the guilt and the lack of respect for myself knowing that I was feeling I was failing but I couldn't do those things as quickly as everyone else. Or remember those things, the birthdays, the times I've stood my friends up because I forgot we were meeting at the cinema.

You know, I've lost friends over that. Things that sound little but actually they're huge. They linger or accumulate and they make you feel a certain way by yourself. I know that your experience has been more intense, more difficult than mine.

Maybe, although you see, as you're talking, you started off by saying, you know, it was quite straightforward and I sort of did it out of vanity. But actually that's quite a profound experience to get to a place where you have a diagnosis and to look back and say, my whole life could have been different. And that I totally resonate with. And I think everybody who gets a diagnosis of ADHD, he must feel that.

I think so. I think you definitely. It is a realisation that your past could have been different. And honestly, a bit of a fear of the future I had as well.

So let's go right back to the beginning. When were the moments when you started to think that you needed to explore this side of you? Well, I think we talked in our first episode about our journey to coming to realise we had ADHD and I had it suggested by a counsellor and I started to look into it and realise ADHD perhaps wasn't what I thought it was and so much of it explained what was going on for me. And I was having some pretty severe mental health issues at the time.

Such as? I was very impressed. I found out, as this diagnosis story goes on, I was diagnosed with trace of borderline personality disorder, which is about extremes of emotion, living in extremes of emotion. And I was really struggling to cope in the confines of family life because all of my coping strategies have been taken away because my coping strategies weren't particularly healthy.

I was looking for an answer. I wanted to be able to look after my children. I wanted to be able to have a relationship with my wife where I wasn't falling apart emotionally all the time, you know, and having to sort of shut myself away. The more I looked into ADHD, the more it made sense.

Who mentioned ADHD, how did you get there? I was not quite getting anywhere here. Have you thought about looking into ADHD? So I did.

It made sense because I realised it wasn't just about hyperactivity and attention. There's so much to do with overstimulation, with emotional dysregulation. All of the emotional aspect of it was the real problem for me. So I went to a GP.

GP was actually really helpful. But again, at the time we were talking two years ago, there was about a two year waiting list for NHS referrals, sorry, the assessment. We know that there's some places in the country now that we're looking at five years. There's a right to choose pathway, which is where you are able to choose another provider elsewhere in the country that offers the assessment instead.

And that was a bit of a, you know, the GP wasn't quite sure what he was doing with that. He wasn't like they had a process that they pulled out with a draw. This is what we do. It was, I'll go in, I'll work out.

And I'm sitting there thinking, I really need some help and treatment. And everybody is doing the best. But you're waiting for everyone in this process to go, I need to figure out what this is. The GP has to figure it out.

And eventually I get referred to a company and there was about six months waiting for this. And it built up and it built up because I had this sort of sense of almost I want this to be the answer. I want an answer to it. Yeah, almost reaching the goal.

What if it isn't? What if you know what I just, what if you know what I'm trying? I'm depressed and I need to get out of this depression. And that's it.

And there's no systemic big problem that I've always had in my whole life. Do you know what? Maybe I'm just doing a drama. All that goes on in your head.

And then they send you these forms and I had to fill in and I couldn't do it. I couldn't, I got to a place. Even now I feel, you know, I'm still, I live in two different sides of myself. So I look at myself and think, come on mate, what's wrong with you?

Why can't you sort it out? I couldn't fill it in. I've had to do it for me. I told her to say.

It's funny. Yeah, I care, it's filled in our forms for us. I hope I put it in my way somewhere in this room. Yes.

We make the last time. That's why we're here. I hope so. But yes, you fill mine in and you fill it in as well.

And I had all these reports when I sent all this stuff off. And then finally I get there. The day arrives. I'm sat there in front of the computer.

I'm like, you know, I'm stressing is, I think I've eaten all day. I'm about as stressed as I possibly can be. You know, you try to make small talkers that I can't say anything. I just want to do this.

And then of course there's a problem with the link because it's all online. So I'm doing this online assessment. And I got an hour with this guy and I sort of unleashed and I was sort of, I've got to get everything in, I need to make sure that I make my case. And I'm not sure that everybody's experiences like this, you know, I hope it isn't.

But I certainly felt like I needed to make my case, I needed to make sure that I didn't leave anything unsaid. And he sort of listened fairly dispassionately and then he sort of laughed. Oh, no. And he said, well, where was that coming from?

I think it was, you know, I could be more charitable about it now. I think it was misplaced. He said, I knew you had ADHD within 10 minutes. And he was trying to be, I think, supportive, but I did not appreciate that at the time.

And the head's face I was in. And you think, you know, you can say, get a sense of humor. But honestly, when you're in the midst of what was essentially a mental health crisis, when you haven't got a sense of humor. And then that was it.

It was like, okay, great. So there was no time for reflection on what may or may not have been the rest of my life. It was somebody else being touched, will offer you some sort of support alongside this. And then there was supposed to be a waiting list then to start drugs.

So the drugs weren't going to start immediately, but the psychiatrist who I saw decided he was going to do the titration as they call it, to test the drugs. And I just felt caused the drift. And I don't know if they could have done anything else, but I just, you know, there was a sort of a someone who rang me every now and again just to talk about my feelings, but she wasn't an expert. I just, I needed to talk through what had happened to me.

I needed to say, this is a lifelong trauma. And I want to say, this happened to me when I was a kid. And this happened to me when I was an adult. And all those times that I've gone crazy at friends or just not been able to cope with the social situation, I had to go home and shut myself away for two days.

Is this ADHD? There was no space in that conversation. That wasn't what that was about. And in fairness to psychiatrist, I mean, that is a job for counseling or ADHD coaching going forward.

But it did feel like I was just suddenly in this no man's land of, okay, I've been told that this life explaining, but also altering condition is here. What do I do with it? Does that mean all the awful things have been happening for the past few months? All this complete inability to communicate or function or to just hold myself together emotionally?

Does that mean I can never fix this? Does that mean that actually, because I've got ADHD, that's me and I can't fix it. So I was terrified. So then I was thinking these drugs have got to work.

These drugs have got to work. And the drugs didn't work. And unfortunately, the process that I went through with that's even more terrifying. Well, it is, but the communication between the psychiatrist and me was on email.

So you drop it and it was only sort of portal. You'd say, I'm buzzing off the walls, the drugs aren't working. And 12 hours later, you might get a response. Oh, for an air can, that's really stressful.

And so we got to a point where the drug's not working. And the psychiatrist said, well, there isn't a non-stimulant medication you can take. We'll send you back to the nurse to do that. And I can't leave more for you.

At which point, I got an email saying, I had a six month wait to continue the drug trial. And I kicked off, I suppose, as the phrase, and just said, this is ridiculous. This guy laughed during my consultation. He's not responding to my emails with one word.

You didn't care for or... And now he's saying halfway through the drug trial, which for me is like, life or death, it feels, I've suddenly got to start from scratch again. And so they responded to that and I was able to move things on. But it was just, again, it was kicking and fighting all the way.

It was saying to the GP, no, we can do right to cheese. And they will pay for it. It was saying to these people, no, look, I want to try the next drug. No, wait, I shouldn't have to wait to do this.

Now, hang on a minute. Actually, I'm not functioning. It's not just that I don't remember things. I'm emotionally falling apart.

And you can probably listen to what I'm saying and say, well, okay, but that's not what they were offering. Fine. But as someone with ADHD, you could just find out I had it. I fell apart and I needed some aftercare and I needed some support somewhere.

If you were to kind of design the perfect kind of diagnosis or process of being diagnosed for you to go through again, if you were to start again and do it, what would you put in place? Well, honestly, and this is, I mean, this speaks to the issue that I think anyone listening to this who's got any familiarity with ADHD will know. There's a big issue with waiting this and there's a big issue with getting that treatment. And honestly, what we did, we were lucky enough that we were in the position where we said, you know what, sack this off.

Yeah, because it was 18 months ago or two years ago. I'm taking these drugs. I'm checking my pulse every day. I'm saying to the doctor, my pulse rates dropping, what pulse rates going through the roof and I'm getting no response.

I said, you know what, thanks for your help. We're going to go and pay privately to see an off-site actress, which is what I did. And then I got his time and I got him to sit with me and explain what ADHD was and explain what parts of my behaviour were because of ADHD and what was going on in my brain. And suddenly, and how fortunate were we to be able to afford that?

Exactly. We were very lucky. We were able to do that. And then as it happened, the drugs didn't work for me.

And it became clear that there were other things going on for me that he was unable to say, look, you've got traits of borderline personality disorder and there is therapy for that called DBT and things got pretty dark at this stage. Why? I just felt like I'd fallen into, I felt like I was stuck. I'd been told that there was something really wrong with me and that it had always been there.

And then I was told the treatment for that was medication, which didn't work. And you were told that that fixed it? At which point? Or it might fix it.

But you know, if it doesn't, then what? And then I was told that there's talking therapy, well, I've been doing that for years and years and years. And I thought, well, there's no out of this. I am going to keep losing my rag with my children.

I know that's not everyone who's the regular children. But I mean, just being unable to rationally see that my wife is making a point about the fact that there's a box of corn flakes on the side and that not turn into an utter row and me having to have a bed for two days, you know, which is where I was. I mean, I think in old fashioned terms, you'd probably say, I had a nervous breakdown, which is what happened. And I was fortunate that this psychiatrist was able to say, you've got traits of something else here, which we know with ADHD often happens, people are other mental issues.

Because you've lived your entire life with something that you don't need to fall. And you found ways to manage it. Haven't you found ways to deal with it? And I mean, you know, how many people with ADHD drink too much, eat whole pack of biscuits every night?

It's that whole sense of, well, what's out there that can help me? Because I don't know what I've got on there. And therefore, I don't know that I need DBT or meds to help me manage that. Did you go through the grief?

Did you experience the process of grief? Yeah, definitely. It's funny, even as I recount this story, I think, well, it's the problem you found out you had something and you know, as the doctor wasn't there to hold your hand 24 hours a day, well, of course, they're not. But it isn't that it's looking back at your entire life and saying I had an assessment by a behavioral psychologist in school when I was in year eight and nothing was found.

There was, you know, special education, these teachers come into see me in primary school. This stuff, my parents have been knocking away at this. There'd been questions being asked all my life. There was clearly something going on.

And it wasn't just, oh, you know, I struggle with listening. And I, it was like when I was in situations like with my family where I wanted desperately wanted to be able to look after my children, I wanted to be able to listen to my wife and make her feel like I was, I was listening to her and I was there for her. I could not do it. And it wasn't because I was lazy or because I was not trying hard enough.

I couldn't do it. And with the help of a pretty intense therapy course, I can. For some reason, hopefully, can help do that. But how different things might have been if I found that out when I was seven rather than 37?

All those difficult years and all those difficult friendships and difficult relationships with employers and teachers and, you know, parents. And I look at it now actually as a positive. I mean, I think, I know I'm not always bothered about my ADHD, but the diagnosis, if I'm saying I've got ADHD and that's where I am, you know, I'd rather not have it, but not being diagnosed with and having it, not knowing my head was a lot worse than knowing I've got it and knowing that I can do something about it. So in that sense, diagnosis was a real positive.

When you've heard our stories and how we would diagnose, but want to take a look at what it's like for people getting diagnosed right now. And the man to answer that question for us is co-founder and CEO of ADHD UK, Henry Shelford. And I'm pleased to say Henry joins us now. Henry, great to have you.

Great to be here. Thank you. We want to sort of get a look at what it's like to get diagnosed. So right now, if somebody is going out there and thinking I want to get diagnosed, what's the picture at the moment?

It is hard to describe how awful it is and that it's getting worse. There's this huge variance across the country. So you've got one part of the country where if you're an adult, the weightless is 12 weeks, which is brilliant, frankly, and another part of the country where it's 10 and a half years. 10 and a half years.

The person who's been waiting the longest in the country has been waiting eight and a half years so far. Oh, for goodness sake. If you're a child, shortest weightless is five weeks, longest, five years. So if you're a 13 year old child, then in that area, you're going to age out before you get a diagnosis.

And you do age out because the child assessment is different to the adult one. So if you turn 18, it doesn't apply. And so that team hasn't set up the dirt. And that's the big one.

So why are we seeing these discrepancies? What's going on there? Are there certain health trusts that don't believe ADHD exists? Is there not enough money in those particular areas of country?

Why is there such a post-code lottery? It's absolutely a prioritization issue. We know that some areas recognize the need funded. We know that people are otherwise getting diagnosed with anxiety, depression, struggling, other.

They're cost to society and to the NHS of not getting proper diagnosis. We have an area where they've decided that they rise in the number of ADHD instead of meeting the need. They've decided to absolutely corral it. So they now have to do a thing called the do it profile.

You can only pass the profile if you are suicidal, risk of harm to yourself or harm to others. And if you meet those criteria only then, can you get an assessment? What kind of system says you've got to be suicidal, having your family torn apart to get seen? It's just it's absolutely outrageous.

And it's being changed. So you've got that kind of area. And then you've got areas going like, right, we need to put systems in place. We need resource properly.

And we're going to have a plan and people here are getting seen in 12 weeks. One of the things we've talked about Henry is I suppose the question is for people who may be looking into this or know somebody with ADHD and don't know so much about it is why that is such an issue. One of the things we've talked about is the crippling impact that ADHD and particularly undiagnosed ADHD can have. And I think perhaps it would be useful to explain to people what that weight means, how that weight affects people.

The most brutal way you can see that is in the suicide field. So we know that one in 10 men or boys with ADHD at some point try and take their own life. It's one in four women or girls. One in four.

And we know that a woman in financial distress and ADHD is 32 times more likely to complete suicide than the baseline. And those figures tell you how hard it is to live with ADHD. And why getting a diagnosed understanding, getting that help is so critical. And until recently the majority of funds to this charity were donated from parents whose children were taken away from life.

And I said it right now, I've got checks from a funeral. And that's regular. And just people don't know that. I think it's important story to get out there.

We've talked about ADHD on here and our experiences with it. And just hearing that, it brings back the memory of being diagnosed and as you said earlier, being made to jump through hoops that are sort of almost designed to trip up with someone with ADHD. I mean, maybe it's useful then to look at what the process is for someone if they're considering getting diagnosed now. I mean, the first thing to do is what to go to a GP, talk to them.

Yeah, go to a GP. Well, I think the problem is like, if you do, you do often feel like some GP is great and some GP is you're going into battle. We have instances where GP is just kind or we had an instance where the GP lied. Like someone said, I'd like an adult ADHD diagnosis and GP said, there's no service in this area.

We then gave them some advice to ask for an individual funding request because an ADHD assessment is obligatory for the NHS to provide under the nice guidelines. And so we were able to give them advice at which point the GP said, I actually, we do have a service but because it's so overwhelmed, we tell people that we don't. And we have a GP saying that if you don't know if you weren't diagnosed as a child, then you can't have ADHD or if you've managed to have a job or some kind of career, then you can't have ADHD. Like it's real.

So step one is find out about it and learn a bit about it. We've got an adult ADHD screener. It's from the World Health Organization at Harvard University. It's a great thing to do.

It gives you a PDF that you can hand to your GP and it's great evidence to say, look, the screener recommends that I have high indicators of ADHD that I should be assessed. Please come out. Can I do that? So go to your GP, learn about it.

When you're going in, I'd write down why so that you don't get lost on, you get those things down and said have that conversation. They will then refer you or should refer you. At that point, you want to ask, what's the weight list? How long is it?

Now, look, when we've just done a big freedom of information on essence, it has taken us six months to get the data. 70% of NHS health care board areas, health care boards don't know that weight list. Don't even know. These are the people commissioning the service.

They don't know how many people are waiting. Like, what is going on there? That is surely a fundamental failure in their understanding of what ADHD is. Surely it goes back to what Sam and I talk about a lot, which is the naysayers, the people who don't believe ADHD exists.

I don't really think the impact of it. The impact it has on people. And if this is where we are starting from, how are we ever, ever going to change the waiting lists that some people are facing? No, look, this is the battle, right?

If you look at different mental health conditions and where they've got to, if you look at say depression, you know, 20 years ago, if you said you had depressed people, we said, be like, are you considered like turning that smile outside? Yeah. If you smile at the world, it would smile like, and that was this kind of advice you'd get. And people now know that depression is not sadness, right?

The normal experience is sadness. And a good chunk of people know that getting a bit anxious or getting a bit worried is not chronic anxiety. But if you look at the battle, like, depression's well, just moved on. Anxiety's probably halfway down that we're right at the start.

You know, our experience of focus is not the experience of other people's focus. We still get advice from people, you know, have you having trouble with organization? Have you tried a list? You know, I think that's one of the things we're starting to learn, just how sort of the baby steps almost of where we are with ADHD and people's understanding of it.

Going back to the process of diagnosis, one of the things that's there to try and cut these waiting times is right to choose. Can you talk a bit about that and how that works and how effective that is or not effective? No, that's great. So where I got to say, you go to a GP, you get the referral.

And at that point, you should ask your GP, how long do you think I'll wait? We then maintain, we contact the right to choose providers every month to find out what their waiting times are. And so our regulations go to our site, go to the right to choose page and get that information. And we put it there so that you can have that make that decision.

What's my local time? What's my right to choose that? Now, right to choose only applies in England. It does not apply in Wales, Scotland, Ireland.

And it gives you the right to have your referral directed anywhere in the NHS. And that includes subcontractors to the NHS. And those ones we could call right to choose providers and private companies who specialize in an ADHD diagnosis provision. And you can go there.

Now, to do that, you then go to their website, download their calls, give them to your GP. So one of the questions I was going to ask you is, well, this may be what you're about to say, sorry, I've interrupted you classic ADHD. But one of the things I had was my GP actually was really helpful and really supportive. But he was concerned that the local commissioning group wouldn't pay for the treatment.

There was some confusion about whether the NHS and my local NHS would be responsible for that cost and whether they would improve that. So how do you get over that difficulty if that's a question you face? It definitely is. So to the extent that we've actually sort of got a formalised process for this, so there's a letter you can download off our site to give to a GP who doesn't understand what right, you know, right, it's your right.

It is your right to choose. So the GP, their right and is, do they refer a lot? Your right is where that referral goes. Now, or normally it just gets written to the local area, but you can redirect that.

And our letter very politely tells the GP that the local commission service has to pay. Like, that's it. That whole set of questions just isn't something. Now, what we are finding happening though is that NHS health care boards are making very difficult for the right to choose providers to get paid.

And so there are there is more paperwork happening on their side and you'll find them needing all those forms filled in. But once you're in, you're in, now look, there's been a big problem then that right to choose because of these massive ratings across the country, right? She's inundated. And so the biggest provider, psychiatry UK just closed their doors recently and said we're taking no one new, we can't, you know, we can't do it because we're getting more people every month than we can.

Our current waitlist is now, I think, at that point, we're seven months and it's going up a month every month. And like, that's, we've just got to stop, press pause on this and go through people. There are other providers you find on our sites, you can't be seen much more quickly. I think the quickest at the moment is around three months.

But we are expecting that to shoot up now. That main providers are really big providers close their doors. And then, you know, once you've got to your diagnosis, there's then the diagnostic process, there's medical titration, and there's all the grief that comes with that. I mean, again, this process is one that if it's drawn out, can be incredibly painful.

But like, there's drawn out, and there's drawn out. Like, I know someone, they wasted, they waited three in a bit years to get a diagnosis. And to be quite just to be clear, for that person, that was their entire university career. So they were on a three year course, their diagnosis, I think was four weeks before their final exam.

So they're in entire experience, their learning experience, their grade, everything impacted by that waiting list. And that grade that experience will then define the start of their career and the rest, they are fundamentally disadvantaged. They got the diagnosed and the person who wants to consider to try medication as an option. They said, yes, and said, right, we'll put you on that list.

See you in two years. I know that there will be people out there who, as you've told us, will be in that limbo world of waiting for a diagnosis, waiting for treatment, waiting to be seen. What is your advice to them about how best to cope in those circumstances of, you know, what can they do to keep themselves healthy and do their very best for themselves and their families and their jobs and employers and in all those different ways that they're going to be trying to survive? What would you say to them?

I did. Like, it's something that just frightens me so much. Like, is, so we talked about those statistics, like, and just the damage that's getting down the difficulty. And you talked about coping mechanisms, like that is a time for coping mechanisms, whereas once you're diagnosed, and like, we really don't who wants to cope.

But like, we talk about strategies, like we want to do things, we see people with ADHD doing incredible things, like being top of their game, like, and top of, you know, every game and getting those, you know, what we want for everyone in terms of what to do in the interim. And actually, I think, Sam, like, you've talked to this, which is everyone, and it's not to be honest, everyone with any medical condition is, I hate, it's the line between like me and the condition, like, what's me and my unique personality, and what's the condition? And because I need to really know, because I need to know what's amounting for me and the molehills brothers, but also I need to know where I'm making amount in out of molehills. I mustn't like enable myself to be like, awful.

I need to know, I need to know what to be kind to myself, I want to like, push harder myself. It was an identity crisis, for me, it was an identity crisis. Yeah. And so what I would say is like, learning about ADHD, and honestly, one of the best things you can do is go to like ADHD groups.

So we have multiple groups going on, and then you almost anyone time, and they're free to go to to you, if you can. And what happens is you just, they're all virtual, so you don't have to join with your camera, you can just listen and lurk. But what happens is you're listening, you hear people say something about themselves, and you're like, whoa, that is me. It really helps you define that line of what to you, what's ADHD.

And in doing so, also people talk about their strategies for that issue. And you learn from that, and you grab these strategies and each one, like you can have things are really huge problems in your life, and you get a strategy in place. And it just, it goes. Like, it's no longer an issue.

And that is so wonderful. And so that's, that's what I would do. When people first, I mean, like, they talk about having three emotions, there is, I mean, there's a morning as an angle, like for how hard it's been, like, and, you know, how life could have been. And there's a sort of, there's a piece of like, this just makes sense.

Finally, finally, I've got some answers. No, I know. And that brings with itself a huge piece. And then there's a joy, right?

There's a joy for how life can be from now. There's how I can change it, really get that success that, and those achievements that I've always known I'm capable of being thwarted in. And that is joyful. And that joy, though, is coming from building those strategies, getting that understanding, getting it so that you can be the successful person you can be.

And so it's that joy piece that learned, that's where you want to go towards. I think that's a really positive conversation, incredibly moving, afraid, apologies. We've been sitting here weeping during our conversation. I think we've been very clear.

This is an incredible emotional journey for all of us. I mean, when you talked about that waiting time and you talked about the impact on people, were they waiting? It was like a gut punch for me. It was like I was back there again.

But it's knowing how many, do you know what actually the statistics I find so difficult is knowing how many young men and women are undiagnosed, because I know that those are the ones going off into the workplace for the first time, or the ones going off to university and they're leaving home. And they're losing all of that structure and support from their parents and their alone. And you describing that young lad, I think you said got diagnosed only just before his exams. That's a terrible state of affairs, because we are letting down an entire generation.

And that's awful. And we've been less than done for a long time, right? ADHD wasn't formally recognized by their NHS until the year 2000 for kids, 2008 for adults. That's the reason we've got limited services that have to be built up.

But it's also the reason why it's so many adults like me coming forward going, this is like a need to diagnosis, I need that. And instead we're having people going, oh, like, is everyone caught this off TikTok? That is one of the main drivers for us doing this podcast is to say, this thing is real, and it affects people in incredibly harmful ways. I think one of the things that is shining through all of this for me is that message of hope for you.

There is resources on your website, there are groups, I think one of the really important things to remember, and I wish I'd known it at times, that there are groups, there is help for you while you're waiting for diagnosis as well. And we'll obviously make sure that people have access to your website and the resources that are there. And if people are waiting and they find themselves in that situation, they can seek out into and help. No, thank you.

And Casey, I also find this very emotional. And I did a big interview on live TV over the weekend. And I was asked about medication, the fact that right now there's a medication crisis, and I'm impacted, someone's going to run out shortly. And I was asked what was my plan?

I had to admit, I'm trying really hard not to think about it. I know I'm sitting here getting upset. I know I'm one of the lucky ones. I've got a diagnosis.

I can, I do okay without the meds. I can, I can, I'm not suicidal without the meds. But my heart breaks for those people that are not in that position. And the fact that we just haven't woken up to what a nightmare a lot of people live through.

And that is very upsetting. I mean, I tell you one thing as well, we've had a conversation a number of times where Katie is probably the more positive person about ADHD. And I tend to be the one who is pretty down on the whole thing. And he's not messively.

But I feel like I'm the one who's trying to be revs on side today. I'm not quite sure what that says about this conversation. If I'm the one who's trying to be positive. But I think we have to say that we are doing our best to try and try and spot light on this and you're doing some great work, Henry.

You know, we'd love to talk to you again. And we really appreciate you taking the time to talk to us today. Yeah, thank you for coming along. Oh, thank you.

That was a really tough episode, actually. It brings back a lot of memories and a lot of bad memories, I have to say. And for you, I think too. I kind of went on an unexpected journey during that conversation, actually.

I found it quite shocking. Obviously, the suicide attempt statistics are very shocking indeed. I was really, really glad that we were also able to look at what we can do when we're trying to feel better during this process and how we can cope with those feelings. And actually being reminded that it does get better.

It always help out there. Yeah. And I don't feel like I did back then. Yeah.

And Henry talked about the support that's out there. And we will obviously put all the details of that in the description. Absolutely. You and I have taken great comfort from talking to each other and talking about all of this.

I think what he suggested about if someone's sitting on a waiting list waiting for diagnosis, his suggestion that you get online, you go and find your tribe, you go and find your people, because you will find people going through what you are going through and you will find enormous, honest and comfort in that. And it will help you wait until you're able to get your diagnosis. Next time, oh, I don't know how I feel about this. We have an ADHD specialist relationship counselor coming in.

Karen Doherty, oh, just head to my husband. You can listen for 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.