The cost of waiting for ADHD Assessment

This episode is dedicated to Jodi Walsham and to all ADHD adults tragically no longer with us. Jodi's Mother Jayne shares Jodi's story on World Mental Health Day in ADHD Awareness Month to raise awareness about the serious danger to the lives of what is underestimated at 196,000 vulnerable people currently on waiting lists for ADHD assessment in the UK.

It is a common misconception that ADHD is a mental health condition. It is in fact a Neurodevelopmental condition. But in many cases the impact of battling through life with unidentified and unmanaged ADHD, and the trauma this can bring to life circumstances can lead to commonly co-occurring mental health conditions and severe mental health crisis;  and as in Jodi's case - who was also awaiting assessment for Autism - the lack of support available resulted in tragedy.

TRIGGER WARNING: There are very triggering topics covered from the very start of this episode, including: suicide, suicidal ideation, self harm, drug addiction, premature loss of life, bullying, relationship struggles, depression, anxiety, self harm, divorce, traffic accidents.

If you are struggling, please do not suffer in silence. YOU ARE NOT ALONE. There is free and immediate support out there so please REACH OUT FOR HELP.

Jayne is heavily involved with the suicide prevention charity Baton of Hope. I am so grateful to Jayne for all of her support and for allowing us to hear about and from her wonderful daughter Jodi.
Love and Scars, written and performed by Jodi Walsham

ADHDAF+ Charity is dedicated to Jodi Walsham, to all of our absent friends and to our 'absent minded' friends, the Leopard Print Army.
Though in its infancy, ADHDAF+ Charity number: 1208650,  aims to connect and empower ADHD adults of marginalised genders in England and Wales, with plans to extend into Scotland once we are properly up and running.

The website and domain are currently connecting, but if its not there yet, you will be able to find out more at www.adhdafplus.org.uk and social media will be coming very soon: @adhdafplus

The cover artwork for this episode was selected by Jayne as a fitting tribute to her daughter and to convey the message of this crucial conversation. It was taken on ADHDAF Day '23 by Gem Clack Photography

In a system so broken that people in mental health crisis could be waiting the best part of a decade for life changing and in many cases life saving ADHD assesment, diagnosis and treatment; what we do have is each other. 

Transcript

 So this is a very important and very emotional episode, which has been a long time coming.  This conversation was recorded a couple of months back, and we decided to hold on to release it today, as today is World Mental Health Day, and it falls within ADHD Awareness Month. Now, ADHD is not a mental health condition.

It is a neurodevelopmental condition, which without the knowledge, understanding, compassion, and support essential to navigate life with the condition, it can cause neurodivergent people to suffer extremely poor mental health to dire consequences.  So depression and anxiety, both mental health conditions which commonly co occur with ADHD.

It can be the case that the unidentified, unmanaged ADHD and the lack of understanding of one's own, and indeed society's, negative perception of the symptoms is what causes the anxiety and depression in many cases.  The ADHD and commonly co occurring autism Are the mistreated, misdiagnosed, or indeed undetected root cause time and time again.

Please have a read of the description before listening on because we cover some really triggering topics and well, tragedy.  If you are not in a place to listen, perhaps save this one for another day, or wait to listen when you have the space or support around you.  In the show notes, you will also find a link to resources to free and immediate support.

If you are struggling, please, please don't suffer in silence. You are not alone. There is help out there, so please do reach out. So, this is a conversation. With a wonderful woman called Jane, who I've been speaking to on and off over the course of the last 20 odd months or so.  Jane is the mother of Jodie, who is the woman whose photograph I'm holding on the cover of this episode.

I asked Jane what picture she would like to have on this very special episode.  And she asked me to use that photo as it's a fitting tribute to Jodi and the message of this crucial conversation.  Now that photo was taken last ADHD AF day. So October, 2023, when I attempted to launch a campaign. To push to find out the number of people on waiting lists for ADHD assessment.

Jane, let me take Jodie's photo  to convey the danger to the lives of all of the vulnerable people on waiting lists. The cost to those who's already damaged mental health as they sit in limbo in desperate need of support. This episode and what I will announce at the end is dedicated to Jodie. To all who we have lost before her, and in hope to save many like her, by pushing for systemic change and an aware and supportive society. 

Yes, hello Laura, I'm Jane Walsh and  we lost Jodie to suicide in January 2021. I needed to know why. When you have an inquest for suicide, You don't get the answers. You you need the answers. You want  an inquest tells you when, how, and where the questions of why never get answered. So I needed to understand why Jodi had taken our own life. 

So I started to look back into the letters from gps. The inquest, the inquiry that mental health services did after Jodie died. And records came up a couple of times that Jodie had started diagnosis for ADHD and autism.  And at the time when Jodie did say she'd asked for this diagnosis, I can remember paw pawing it.

I said, don't be silly, Jodie, you haven't got ADHD. My perception of ADHD was a seven year old boy doing zoomies around the classroom.  Autism, I said, no way. We knew Jodie struggled. We didn't understand why. Never understood why she struggled. Jodie on the face of it was a very happy child. There was no problems at school.

She had lots of friends. She was always out somewhere partying. She was never excluded from anything. So she lived as any other child and we, we couldn't understand why Julie had a problem and we didn't understand the problem. So after the inquest, when I started reading through and saw this ADHD and autism thing again mentioned,  because what they've done, mental health services, they had started diagnosis and first indications were that she was 100 percent ADHD.

autism and they forgot to assign somebody for the next level, whatever that undertakes. So it was just pushed under the carpet, nothing happened. So I started to research and look into ADHD and yeah, it just blew my mind. I had no idea what ADHD  was.  And understanding the ADHD, if we had understood it, would have been a case of, we would have understood why Jodie was like she was, why she struggled.

Now that I understand what ADHD is, especially, I can look back over Jodie's life, right back to when she was a child and see why she reacted in certain ways to certain things that happened. And if we'd known about the ADHD and autism, because I believe Jodie had sensory autism, Because there were certain things that drove her crackers, the touch on the palms of her hands, just silly little things that we didn't understand.

So you put these things together and we can see now that it was the anxiety that that caused when she was a child, not understanding what was going on in her brain. Yeah. Not understanding why she felt different.  Even though, when she was very, very young, in Homshof here, we live in a sleepy little village, and we have a first school here.

When Jodie first went to school here, she was just Jodie, because she started school with kids that she'd known all her life, and she knew all the kids in the school anyway. So Jodie was just Jodie. She, she didn't need to act any other way.  Now when Jodie was nine, she went to middle school. Middle school is in Hickson, which is the nearest town to us, about five miles away. 

Julie was faced with 500 kids she'd never met before.  And that is a definitive time that I think George changed.  Massively.  I can see it now. Looking back, at the time you didn't see it, but I can see that now looking back over.  Jodie was a, when she was here, she loved clothes. She always loved her clothes.

Bright clothes, always lovely and bright colors and everything. When she hit middle school, she started copying everybody else. She did not want to stand out. She had to be the same,  fit in with everybody else so she didn't stand out.  And that's what I can see happened to Geordie up until she was up at university.

She fitted in. Everything had to be exactly the same as several other girls. So she fitted in type of thing. And that's when I think the anxiety started because that's when we noticed a change in Geordie. She was At the time, I described them as tantrums, anger.  When I went to see my GP about it, when she was about 10, she dismissed me and said, you need to discipline Judy more.

Judy wasn't naughty. She wasn't a perfect child by any means. She wasn't a naughty child, but you tend to believe doctors. Do you know what I mean? I didn't understand about the A DHD and autism at the time because it wasn't even in question. So it was a case of it. Literally, you believe what your doctor tell you to. 

So I believe it was my fault. I can remember walking out of that surgery absolutely devastated, thinking, this is my fault, it's something that I am doing that is making Jodie unhappy. It's that I blame the parents thing. I blame the parents, discipline your child, when actually what you're going there to say is not that my child is naughty, it's that my child is in distress.

Yes.  But at the time, I didn't even know how to put it over to the doctor, how she was  behaving, really. We literally struggled through it for the next few years. And I mean, it was hell at the time. It really was. Thinking back, it must have been awful for Jodie. Because we didn't understand what she was going through.

And it was a case, when she went off to uni, Jodie kind of found herself a little bit. I think she felt comfortable within the group that she'd found. And she became Jodie again. She didn't copy anybody. Jodie went down to university in Liverpool, with the long blonde hair, mini skirts, the high heels, the eyelashes, the works.

A year later she came back, dreadlocks, Doc Martens.  Just Jodie.  Do you know what I mean? She relaxed into who she really was, which was quite lovely to see, but she still struggled and she didn't understand why. I do believe Jodie didn't have an inkling, but she never ever mentioned it to us. Never, ever said a word.

Jodie did a course at uni. She was at Liverpool,  Liverpool's Institute for Performing Arts, but she didn't do a course where she wanted to be an actor or anything. She did a community drama and applied Theatre course, which meant she would take theatre, drama, and do community initiatives and events, which helped people in the community. 

When she did her exam at school in sixth form, she had to go into a special school and do part of her exam. That was part of her exam to go in and then do drama and singing with the children. And we have a school in Hexham, it's for children who are from autistic right up to severely disabled children. 

And she was doing singing and dance with one of the classes one day, and one of the teachers came up to her and said, See that little boy over there, who's about seven, had autism, severe autism. And Julie said, Yes, this is good. He's been here two years and that's the first time I've seen him smile with you, what you did with that child.

So it proves that drama, singing, that type of thing, really, really worked.  And I think that's what drove Geordie to do the degree that she did, because that's what she wanted to do. Yeah. To help others. So that's why Geordie took that road of that kind of degree, to try and help people. When Jodie finished uni, she came out with a 2.

1, which is perfectly, absolutely fine, spot on.  Jodie needed to be first. She, she felt as if she wasn't good enough. She was kind of one point off getting an A. Do you know what I mean? She would beat herself up over things that really she didn't need to. I think she always felt as if she wasn't quite good enough. 

And that's where the anxiety came in. That's where, do you know what I mean? She would beat herself up about things. Jodie was a very, on the face of it, a very confident child, a young woman.  But inside, I don't think she was. It was a facade is what she put on. She was known as Smiley Jodie and, you know, the room would light up when Jodie walked in because that was the kind of person she was.

But inside, she was probably crumbling. I can remember when Jodie was  I didn't understand it at the time, now I do. Jodie tried every sport room, you name it, she tried it. Gymnastics was her forte, she was incredible at it. And when we took her down for lessons, she would never walk in on her own.  I always had to walk her into the sports arena.

And then I could go, and I was like, right, cool. And this, this happened with everything, unless she had a friend to walk into a place. Remember she was a dancer as well, she loved to dance. And she won a course to do with Dance City in Newcastle. And she was about 15 at the time.  And I can remember driving her to Newcastle, dropping her off.

And she said, you'll have to walk in with me mum. I said, Judy, I'm in the middle of Newcastle, I can't just stop and get out the car. I  I said, I can't, you've got to get, just walk through the door, it's there.  Now I understand, that was her anxiety, not me. Once she was in, she was fine.  But the anxiety of walking into a new place where there would be possibly people she'd never seen caused the anxiety, and I can see that now.

At the time I didn't understand it, I didn't get it. The deaf thing is, I'm like that.  I know I am, but I, as an adult now, forced myself to do it. Yeah, you do it and you put the face on. And Jordan became like that.  I think she forced herself into situations where she would do that. But as a child, I can see now why those things happened.

Whereas if I'd known,  what we didn't know, and that is, that is the thing. And that was,  looking back, if I knew then, what I know now, I think we would have been on a completely different path in our life now and Geordie would still be here. I really do believe that. But that's, you know, I don't know that there would be a single person listening to this podcast that wouldn't relate in some form.

You know, we all know that the wrecking ball of ADHD can swing in and it takes out marriages, relationships, education, career, and the very worst  as what's happened to you. Yeah.  It's just so unfair on people  because.  Especially with girls because it's not picked up on as much.  It just amazes me. I even know people now who have children who are, have a diagnosis of ADHD.

One in particular, a lady I've known 25, 30 years. I've known her daughter since the day she was born. And she is really struggling, this young lady.  And a friend asked me some questions, can I get some advice? And I said to her, does she have ADHD? And she said, yes. And I says, that's the problem. Oh, no, no, no.

It's nothing to do with that. And I said, right, I'm going to explain some things. And I sent her some stuff to read. She didn't know, even though she had a child. Yeah. Who has a diagnosis of ADHD, they still don't know what ADHD really means. Yeah. Yeah. And this is the problem. They're not explaining to people.

No. They're not letting them know what ADHD means, can cause, and the problems it can cause within life. And that's what people just don't understand. Even people who have children with ADHD don't know these things. Yeah. Yeah. You're absolutely right. The awareness is everything because like we know, you know,  it goes right back down to the GPS.

Like, I know when I was speaking to Dr. Nick at Arif, she said, you know, the issue is that the training isn't compulsory. So where is the incentive to do it? If you've got a busy, a busy practice, you don't have time, you don't have the funds, you don't have, you know, so how you've got anybody standing in the position of gatekeeper that isn't even trained. 

Is is a terrifying thing because, you know, obviously you would hope once it gets to the point of assessment with a psychiatrist. Well, again, you would hope that you would have more information to walk away with, but even at that point, if you've made it past, you're lucky if you can get the meds in any kind of timely fashion.

But on top of that, you're given the choice in most cases, either medication or therapy, when it even says on the instruction packet inside the medication to be used together. That is the treatment is both together. And you only get offered one or the other. Yeah. Yeah. This is the problem, isn't it? That's the thing is that it's, it's really, really terrifying.

You know, we know that the world is in a poor state. We know that the NHS is on its knees. We know all of this. So there are millions and millions of problems.  The issue is that this problem  isn't being taken seriously enough. It isn't actually understood in common place. What can happen? Exactly, exactly.

And it's, that's all about education and awareness and informing people. I mean, you know, how much would it cost the doctors to have a leaflet when your child is either under diagnosis or being diagnosed that explains what it means.  Yeah. It's not rocket science, is it? No, it's really, really not. It's really, really not.

And it really is quite scary. Do you feel that when Jodie went to get assessed and she went through that first stage of assessment, did she go to get assessed because at that point she was in crisis? Is that how it happened, yeah? What happened was Jodie, after university, Jodie and her boyfriend went travelling.

They went to Vietnam and they lived and worked in Vietnam for about a year. It got to the stage where Jodie wasn't coping very well at all. So we decided it was best that she came home because Ali was struggling to take care of her and she needed to come home.  So we got a home in March, 2020, which as you will know, it's just before lockdown. 

So we took Jody down to our GPs and she referred her to mental health services.  When Jody got referred, she never saw anybody. Because of lockdown, it was either done by a phone call, she never saw anybody face to face, and I now know that Jodie had said because of the inquiry that came out after she died, that Jodie said to mental health services, you start diagnosis with me or I will not interact with you.

And that's when she got it started, diagnosis for ADHD and autism. Jodie did a dissertation on mental health  that you made. I think she understood a lot more than what we knew. Yes. But she never said anything to us. She didn't say any of these things. And her initial diagnosis was a tick box.  You know, when they do the tick box.

And she showed me this piece of paper and she ticked every single box.  Every single one. There wasn't one that was missed. She was in crisis. When she was in Vietnam, she was struggling. She got home. She was okay ish. Because she was at home. Do you know what I mean? It was fine. We got her the referral and my relief when we got her referral was thank God for that.

Thank God for that. Yeah, they did nothing. They did absolutely nothing. I stuck her on antidepressants. Well, the JP did anyway. So, and they put her on Cetralin.  Well, we know that Sertraline and ADHD aren't always good together. Some people can, some people can't. And I can remember Geordie saying to me, I do not like this medication.

It subdues my personality.  And Geordie didn't like that. She liked being who she was. ADHD and autism is who Jodie was. That was the beauty in her. And that's when she got the first referral. She said, right, okay, I need to do something because the most important thing in Jodie's life to keep her on level was  purpose and stability. 

That really worked for Jodie. And she knew that. She knew that. So she says, I need to find a job.  So she was thinking of going on to do something in social work. Um, So she thought I need some sort of experience. So she applied to be a mentor in schools and she got five different offers from different parts of the country.

I've never known Jodie go for a job. Jodie worked, you know, as a kid, right the wheel, pubs and cafes and everything. Jodie never not got a job. Every job she went for, she got it. She was a very personable person. She could talk to anybody  and she was very likable. People liked her and she, I don't know, she made other people feel comfortable and that was her way. 

So she got this job and she was deciding which one to take and it was to start in the September time.  They announced that the schools wouldn't be opening in September. Now Georgie took that as the job was gone. It wasn't, it was put on hold, but then Georgie's mind.  That was just like that.  And she was all over the place.

And then a friend introduced her to some people in Glasgow. So if you went up there for a few days, come back, all of it, that's the place I want to be. And we were like, Oh God, that's too far away.  But anyway, she found a job in Glasgow. So, we said, we've got nowhere to live in Glasgow. I just sofa surf, and it's not, you know, that doesn't, you know, that worries me.

The stupidity.  So, we got her a flat. We made sure we paid up front six months, so we knew she had a safe place to live and everything. Moved her in on the 13th of December, I think it was, in 2020. She started her job a couple of days later. It was just working in a cafe. It was a vegan puppy, and they took her on as a chef.

She was a brilliant cook. She told them she was vegan. She wasn't. 

She already loved a bloody steak. But anyway, she  really wanted this job, so she told them she was a vegan.  And they took her on. And she started the job a few days after she moved into our flat in Glasgow. And then Scotland went into second lockdown.  And the job went. And her resilience just went again. So she literally spent what, what, five weeks in Glasgow before she died? 

There was another thing that we found out within the inquiry, the incident inquiry thing that mental health services did. And Judy phoned me up. She wouldn't come home for Christmas and I couldn't understand why. And then she says, Oh, I want to spend it with me friends. And I thought, okay, I get it. 

Sitting footy Christmas with me mates.  So we didn't push it too much. She told me two or three days after Christmas. That wasn't the reason she didn't come home. The reason was a friend of hers had tried to take his own life into her flat. So she looked after him  and she got him into rehab.  Because he was seriously into drugs and things.

So she arranged all the rehab and everything for him. She got the money off the family. She literally organized the whole thing, but she couldn't get him into the 27th of December. So she had to look after him up until that point.  And I think that pretty much drained every ounce of resilience Judy had.  I think it drained her completely.

The individual who she went to school with, they knew each other from year nine. It wasn't very nice to her While he was in rehab. They must be still allowed to have their phones. Mm-Hmm. And they sent us so much abuse saying, why did you put me in this thing place and all that. And Jodie took that to heart, she cut herself off from Facebook and everything, so she had to isolate herself in a way, just to get away from that.

Just after New Year's she phoned me and said, I've got an appointment with mental health services up here in Glasgow that granted me an emergency one. I said, why? And by this time she told us about what had happened with her friend. We didn't know any of this till after the fact. And she said, Oh, just after the, my friend, you know, what's happened?

She said, I'm feeling a bit low. And I said, okay, well, that's good. Go and talk about it. I said, give me a ring when you get home, and  a friend formed. This was one of her new friends in Glasgow, who we didn't know.  And said, Jodie's asleep. She's very tired after her appointment. She'll speak to you tomorrow.

Next day, nothing. Jodie and I used to message constantly,  talk to each other virtually all the time. And it was not what it used to be. Very few conversations. So, about  a week and a half, if not two weeks afterwards, Another friend phoned and says, I think Claudia needs to come home. She needs to go back to Northumberland.

She's really struggling. So I said, okay, this was about 10 o'clock at night this happened. And I say this because this is me trying to make myself feel better. Why we didn't go and pick her up that night. It was minus seven and freezing cold. You could not see a hand in front of you.  And that was the reason we said we'll do it in the morning. 

So, the idea was a friend would drive her down to Carlisle and we would pick her up in Carlisle.  And,  we never saw her again. She, she took her own life that evening. Well, during the morning, middle of the night, five o'clock in the morning or something. Um, she didn't try and ring me, but her phone was broken. 

She didn't try and message me. She did try and message a couple of friends.  One was asleep at two o'clock in the morning. She didn't get the message until eight o'clock. Oh, hi, Jodie. Sorry I missed your call. Too late. She tried to fight it.  the whole way, but nobody was there. So that's pretty hard. I know why she would have messaged me because I would have panicked.

She knew I would have panicked. Exactly.  So that's what happened. So yes, she was in crisis when she first went down to mental health services, but she came out of that crisis. Yeah, because she was so resilient and just kept getting up. She had an amazing ability for resilience. She did take a dick in October time of 2020, and she did attempt an overdose, but she informed people that she'd done it.

So yeah,  a crisis team member came out to say about two or three days later and lifted her like that.  She could hardly speak in the morning.  She came out of that crisis team talk, probably about three and a half hours long. And yeah, it was amazing.  But you never saw Miggy,  never heard another thing. And that's the problem.

If Geordie had managed to have a conversation with somebody like that every week, I think it would have worked. Yeah, of course. What she said to me is he put things into perspective for me,  made her understand that all the little things that were, she blew out of proportion in her mind.  So it didn't really matter in the face of things.

And he made her understand that. Yeah. And if that had happened on a regular basis, she would have been fine, but no, nothing.  No. Nothing. She heard nothing. When she went for that emergency appointment in the January, I found out, or we found out in the inquiry, she had attempted to take her own life and that's why she was granted an emergency appointment.

And they just let her walk away,  go home to a flat with relative strangers, she'd only known them a few months. 200 miles from home and not inform any family, 23 year old girl. So, uh, that really sticks quite badly with me. They didn't do what they should have done and that was pick up on the ADHD and follow it through.

It was written down that they forgot to take the next level on that. They forgot to document whether confidentiality was discussed.  It was a case. There is nothing written down and any note in Glasgow or in, we presume in Glasgow, but certainly in the Thumbland, whether Geordie had been asked, do you want family informed?

Yeah.  And whether she said yes or no, it's not even documented. No.  And I think that's the thing, isn't it? It's like every step of the way, the different ways that things could twist and turn and the enormous impact that that has. And it's like, when I'm listening to you, it's like, and obviously we have had this conversation before, so thank you for having this conversation with me again.

The bit that really hits very hard is that first doctor that you went to. And the thing that really bothers me about it is that we can sit here and go, okay, well, that was X amount of years ago, but I hear stories every day that this is still happening right now. And that is the most terrifying thing.

It's so terrifying because it's the knock on effect, the responsibility thrown onto you and cast away. And it's just this ripple effect.  It's enormous. And, you know, if our GP, when Jodie was 9, 10, 11, whatever age it was, I can't exactly remember when I went to see her,  if they had said something, flagged something, taken interest, Maybe, just maybe, things would be completely different.

Yeah.  So you're talking about mid 2000s, probably 2005, 2006. They were well away then. They knew then, but they still chose to brush it under the carpet, not take note. And that's the hardest thing, because if only  I mean, when you lose somebody to suicide, it is always, why wouldn't that? If only, what if, they are there constantly.

You can't get rid of them. Doesn't matter how many people say to you, you can't think like that. You don't think like that. You can't not think like that.  Especially when you've got an ADHD brain as well.  You can't help it. No. So it's a case of, yeah. I don't know whether this is an ADHD. I work on logic.

There has to be root causes for things. There has to be reasons why people do things. Yes.  You know, where suicide is concerned, it's a case of, the psychiatrist will tell you that it's a very complicated thing. And there are many reasons. There's never one reason why a person takes their own life. Yes, up to a good degree, I agree with them because with Jodie, I think all these things built up in her brain, and I do it, something that is really, I put it in the shelf, I stick it in a little pocket in the back of my brain.

I worry about that tomorrow, I worry about that, you know what I mean?  And I think Jodie's brain was so full of all these little pockets  that she couldn't figure them out. And it got to that stage where hope was gone. She couldn't see her way out of what was going on.  But there has to be a root cause. And for me, Jodie's root cause was ADHD and autism.

Yeah. And if they start looking at this and realising this,  Maybe we will get somewhere.  Yeah, yeah, absolutely. And the statistics are there. I still don't understand why.  I mean, I, I, I speak, I know many, many people who have lost their suicide now. I live in what I call the suicide prevention world now.  Yeah.

And I know hundreds of people who have lost their lives. family members, children.  And when I get to know them well, I always ask them, did they have ADHD? And you know, I reckon 70 percent say yes.  I reckon 20 percent don't know. I know 10%, one person in particular said,  Oh no, no, no.  They never have known.

Definitely not. I saw a film. Yeah, he did. I can spot them.  You don't, you, you recognize things. And he didn't, even though his family didn't know. I have discovered, I'm from a family of ADHDers, I can look back to my dad. Dad had ADHD. My brother has autism.  My nephew, he died in an accident.  He had ADHD.  And he died climbing down a shortcut. 

My other nephew,  he's got either ADHD or autism and he's kind of not quite sure, but yeah, I can see it across the board and we know it runs in families. And if you've got ADHD, there's a 90 percent chance that your child's got ADHD. So if you've got an ADHD child, there's a 90 percent chance you've got it.

Yeah, exactly that. And it runs in families, it's, it's, it's just one of those things. I can honestly say when I was growing up, I always thought our family was slightly different.  I can't explain why.  I can remember I was the youngest and I had two older brothers.  And I can remember feeling hugely relieved when my brothers found girlfriends and got married. 

Not because I wanted them to go, because I was very close to them. I just never thought it would happen because we were, I don't know. I can't, I'm just, I can't even explain it. Now I understand.  I looked around me as a child and I'd be like,  we're not really like anyone else are we?  And with regards to yourself and ADHD.

Did you discover that since learning about it? Yeah. Yeah. Yeah since looking into it. There was this talk There's a guy called, I don't know if you've ever heard of him, Tom Nicholson, I think he's called. He is a PhD ADHD and all this stuff  And he did a talk, the science of ADHD. And one of Jodie's friends who is going through diagnosis of ADHD at the minute, I said to him, this is, you're coming along, we're going along to watch this guy.

And honestly, it was fascinating. Yeah. Absolutely fascinating. Me and Mattie sat at the back watching.  And he said, you do that. Honestly, it was, it was hilarious. Absolutely fascinating when you get into it and learn about it. And I think it's important that families, especially with children, start to learn about ADHD fingers crossed this government new government do something, but will they, I don't know.

We were with the charity I'm involved with. We got into Downham Street last year, and we spoke to Maria Caulfield, the mental health minister last year. And she came up to me and she said, I believe you lost your daughter, Jane, and I said yes, and she says, why do you think that was? And I just looked at her and I said, I'm diagnosed ADHD and autism.

And then she went, yes, we're hearing a lot of that. And she walked away.  They know  what I think is they're terrified because how many people out there, how many people, and because people who have a diagnosis are entitled to disability allowance.  I don't know where to put it, but I swear to God, I am convinced. 

Well, I definitely think it's got, you know, that's the thing I've never been able to understand in any of this, is that at the end of the day, it always comes down to money, doesn't it? But the bit that I couldn't link up was like, well, you know, if we're saying, of course, suicide, self harm, all of these things that happen to people, eating disorders, you know, everything, alcoholism, drug addiction, divorce, traffic accidents, you know, all of this stuff, if it's about money.

If the literal lives that can be saved is not enough, then we can look at the money and say, well, you could actually save this much money. So that's the bit that I don't understand. In the long run, you could. Yeah.  It's now been shown that one of Jodie's friends, she has suffered from anorexia, most of her life, let's say, and I was chatting to her a few weeks ago, and ADHD.

The chances are, you know, they have now discovered this. I don't know whether it's a new thing or, I didn't know this. But the likelihood is she has ADHD as well, and that is one of the things, so they need to start listening, they need to start, you know, the same many people who are in bother in prisons and things like that, they shouldn't be there,  it's misunderstood and it's, it's out of hand and  yeah, they need to start listening about ADHD because It really, really is.

It really is. I'm so grateful to you for sharing Jodie's story. I'm so grateful for you letting me share Jodie's story. What do you want to say? I think it's a case of Jodie was probably the most caring person you could meet. She was creative. She was empathic to a fault, probably. She felt people's pain.

She felt people's sorrows. He always put others first. He was a person that always stood up for everybody else. Didn't stick up for herself.  And that's because she didn't have the confidence to do that, even though she had the confidence on the face of it, what people thought she had confidence. And that was because she didn't understand what was going on.

So the government need to start recognizing that we need to start understanding what ADHD is, how it can affect people and what it means to their lives.  We're finding women now, you know yourself, in their 20s, 30s, 40s, 50s, 60s, getting diagnosis. And, phew, that's why I've been like that all my life. And I'm starting to understand so much about how my brain works now.

And I forgive myself because I know I can't help it.  You see what I mean? It's a case of that's why I'm like that's why I do that. That's why I don't do that. And yeah, it's a case of the government need to literally take this seriously because it's taking people's lives and I think I'm sticking my neck out here.

Yeah. Because I am very much part of a suicide prevention charity. But I didn't think that one of the major causes of suicide is ADHD and autism. Yeah. And I don't think they're listening. I think they know, and they're not listening. And we could save a lot of lives if they would do something. And then the long, yes, it would cost a lot of money.

But they need to do that because in the long run it would save money. It's like anything. Yeah. Sticking a sticking plaster on something is not going to solve a problem. You have to get to the root cause. And that is with everything across the board. With ADHD and suicide. Yeah, I think there has been surveys done, somebody told me there was a survey done somewhere where they interviewed or they did a questionnaire for people who had lost somebody to suicide and asked if they had certain traits and all that. 

And I can't remember the exact outcome but it was incredibly high. Yeah, incredibly high. In recognition that they had ADHD or autism. So yeah, but I don't think the government are just trying to squash it. That's my personal opinion. I am no expert. Well, the thing is though, with raised awareness,  with people knowing that they're not alone in it, and that there are loads of us, and seemingly more of us,  and with time. 

There is so many out there.  It's scary. It really is scary. So many people. I mean, it's three jabs.  Maker's three dads.  He openly talks about his daughter, and it's a maker, is it? Anyway, one of the three dads. That's what he believes.  Yeah. It was because of his daughter's undiagnosed, or she may have been diagnosed, I don't know.

But it was, that's what he believes. And I think there's many out there. They just don't understand it and it's misunderstood, isn't it? Yeah.  Well,  thank you very much for sharing about Jodie. I will be thinking of her and and the bloody big hunk of steak in the vegan restaurant. But yeah, ever so much. Is there anything else that you 

would like to say that I haven't covered? Because I've got time. Is, you know, if there's anything that we haven't  I just like talking about Julie. Yeah, we'll carry on. Julie was a singer, you know, she loved to sing and she had an incredible voice and her and her friend, this was during lockdown, her friend's a rapper she went to school with and she sings the chorus and he rapped. 

I'll send it to you. I'll send it to you. And they were,  he had a friend who had  some proper recording equipment  This guy said, I want to record you. So he recorded this song. It's quite incredible. She had the voice of an angel. She had the temper of a Tasmanian devil as well.  rather feisty Judy.  She did, yeah. 

She was, she was a very, very lucky person. Yeah.  And she could talk to anybody. She had the ability to talk to anybody of any age and get into deep conversation.  She was just one of those people that could engage with absolutely anyone, and she was just such a lovely person It's just so so unfair. What happened to her?

I mean, she could drive me crackers as well. She was 

Was about well half an hour walk from her house of residence to to uni in Liverpool And so one day she was walking to uni and and Jodie ate people who littered  Things on the ground And there was a guy walking in front of her and he had a can in his hand and he dropped it on the ground. And she shouts at him, are you going to pick that up? 

And he just went. So she picked the can up and she threw it and it was empty. And it went from the back of her head. And he  got such a shock, he picked it up and put it in the bin.  Oh, you dropped this?  Yeah, that was Jodie. Ah, what a list. But, uh, yeah. But that's what people loved about her because Yeah. She would just do something like that absolutely every day. 

So, yeah. She did funny things.  She was lovely.  Just a lovely person.  It's so unfair.  It's so unfair. Very unfair.  And it's frightening, isn't it, when you think how many amazing people. Across the board. There's been 26 suicides in the Thunberland this year so far. And we are a lower of a county. We have less than 400, 000 people.

Yeah. So 26 out of that, and we're only halfway through the year. It's quite frightening. It's very frightening. I don't know what  to say. It's such a, you know,  it's been pointed out to me many times that like, I'm not going to fix it, and it's not mine to fix, but I can't live with it. I can't live with it.

So I just muck in and do my bit. You know, I mean, I was very much, you know, activist, shouting, screaming. It's not going to get anywhere, is it?  And Jane was absolutely right.  I came into this space so angry,  because I was in Jodie's position. I was three years into a never ending waiting list, feeling hopeless, helpless, and like my life was over. 

Privilege came out of the blue and allowed me a private assessment.  But as grateful as I was, beyond belief, to have that opportunity, I was also completely enraged. It shouldn't be a privilege,  I am extremely lucky to be here,  and Jodie should still be here.  Countless others should still be here.  It's completely unacceptable.

And the rage of this injustice propelled me to create ADHD AF.  Last year, without a clue what I was doing, And actually, truthfully, not in the best mental health myself, I went down to the Houses of Parliament, fuelled by rage.  But as I said, Jane was right. There's only so far activism than screaming and shouting, as she said.

will actually get you. I've learned that.  So much like Jane and the charity she's heavily involved in, the Baton of Hope, to push for the change and channel her life experiences into actively helping rather than screaming into political spaces and at media platforms who never mind aren't hearing you, they're literally actively ignoring you. 

I have followed Sue and have changed course.  From activism to charity to push for change. 

I'm overriding very heavy imposter syndrome to tell you  that I am now the founder of the charity ADHD AF plus  Which I would like to dedicate to Jodie and all of our community members that are tragically no longer with us  Though in its real infancy It is a charity in England and Wales. The charity number is 120 8650. 

And once we are properly up and running here,  We have plans to extend into Scotland. I will be sharing much more about the charity in an upcoming episode, but for now there is information available on the new website adhdafplus.  org. uk. So one of the charity's core values is transparency, so starting as we mean to go on. 

The website adhdfplus. org. uk is, um, processing, not processing, like it's linking up to the domain. And, uh, so if you go to that website, it might not be there, but bookmark it because I certainly will be refreshing it every 10 seconds for the next however many hours until it does its thing, but it, it, it will be there soon.

So hopefully when you listen to this, it will be there and if not, it will be there very, very soon. Where you can find out about the board of trustees and our plans and  reluctantly more social media incoming on ADHDAF plus as in plus the word. The charity is an entirely separate entity to the podcast,  the online community and the Emporium.

However, all of the above will help to raise funds for ADHD AF which is a charity to connect and empower ADHD adults of marginalized genders.  And in a system so broken that a person in crisis could be waiting the best part of a decade for life changing and in many cases life saving assessment, diagnosis and treatment,  what we do have is each other. 

Through this podcast,  a community was formed  and through that community, I witnessed enormous change in people's lives. I witnessed connection and empowerment through peer support and the events further cemented.  The power of connecting people in real life. Do you know what? Even the downfall of my activist pursuits helped forge the foundation for this charity. 

So I thank every single person who has supported ADHD AF in all of its forms, because you helped to make this happen.  So  ADHD AF plus charity is dedicated to absent friends  and to all.  of our absent minded friends, the Leopard Print Army.  I would like to say an enormous thank you to Jane for allowing us to get to know Jodie a little bit.

I'm sure just like me, many of you resonated so much to Jodie's impulsivity, her humor, and that raging justice sensitivity.  And I'm so grateful to Jane for all of her support and for sharing her tragic loss of her wonderful daughter to help raise essential ADHD awareness on World Mental Health Day in ADHD Awareness Month, and for allowing us all the privilege to hear Jodie's beautiful singing voice. 

We've got love and scars We'll know 

when you feel these love and scars Singing this song for another Singing this song for another Singing this song for another Singing this song for another Singing this song for another  Singin this song for another. Singin this song for another. Singin this, singin this song for another.