Introduction with Catherine. So Catherine and I initially met earlier this year at an NHS conference, and I think it's safe to say I've been a thorn in her side ever since. So I'm I'm thrilled that she's joining us tonight. So just a bit of background with you on Catherine. She was appointed NHS England's ADHD program director in December 2023 and leads NHS England's work to to improve service provision and experience for those with ADHD and their families and and supports the recently established cross cutting ADHD task force. She's also NHS England's domestic abuse and sexual violence program director. Much of her work is focused on improving support for NHS staff who experience these crimes, including the introduction of the first ever.

Cross health care system charter on on sexual misconduct with more than 300 organizations. She was formerly deputy director in the family and criminal justice policy directorate in the Ministry of Justice and was responsible for most of the government policy relating to victims of of crime in England and Wales and led the UK government response to COVID for victims and witnesses. And and Catherine was awarded an OBE in King Charles' first honors list in 2023. So, Catherine, we're so grateful that you're joining us today to discuss what you're doing within the task force, and there will no doubt be many questions for you after. So passing over to you.

Amazing. Thank you so much, Neil. And you haven't been a thorn in my side. You've been a brilliant ally. So I'm so pleased that you've asked me to join. It's such a a privilege to be here. And I've been listening online for a while, and it's been a real privilege to hear from so many people about their experiences and the brilliant work that they're doing. So I'm going to tell you a little bit about myself, and I am going to tell you a little bit about NHS England. And then I'm gonna tell you a little bit about the work that we are doing in NHS England in relation to ADHD. And then I'm gonna tell you what I think you might want to do if you want to be involved in that work. I'm also gonna tell you a bit about.

What I will try to answer, things I might need to take away, and things that that probably don't fall within my remit. And I can see that many of you have already put questions, into the, space on the website that you'd like me to answer. So thank you so much to everyone who's engaged already, with this session. I know that there's some really, really difficult experiences that many of you have had in accessing services, and, the support that you need, and that's why I'm here, and that's why the program is here. So Neil gave a little bit of an introduction about who I am. One of the things he didn't mention is that I am Australian English. So my dad is Australian.

And my mom is English. And one of the reasons I asked to be on it this time is so that I could straddle between my English family and my Australian family. So hi, mom. Hi, dad. I am also a professor at the University of Technology in Sydney. So I lecture across UTS in Sydney as well as working NHS England. So I have a professional career here in England, but lots to do with Australia. So it's just incredible that I'm able to be part of a conference that brings together work of ADHD UK and ADHD Australia. So my my career has been based upon helping vulnerable people and working particularly in relation to those who experience domestic abuse or sexual violence and who have been victims of crime.

And then trying to really raise the profile of issues that people don't want to talk about are really significant cross cutting social justice issues that have a significant health impact and, that carry a lot of the things that, we have heard about today that, loom large for people who have ADHD. Shame, conversations that are difficult, difficult disclosures, not being understood, being misdiagnosed with, things that, come from a lack of understanding of trauma and experiences. So when NHS England, asked me last year to take on the role of program director for ADHD, I jumped at the chance not just because I thought that the skill set that I had and the issues, the understanding of issues that I have in relation to things like.

Shame and social justice and health impacts would be beneficial, but because I have personal interest in ADHD as well. So alright. Here we go. This is my family. This is me with my niece, Emily, and this is my sister with Michelle with my niece, Ruby. My sister has ADHD, and my nieces, Ruby and Emily, have something called fellow cardio facial sin syndrome, which is also known as DiGeorgia syndrome. They are 12. They have a number of physical, disabilities, learning difficulties. They are both autistic. We think Ruby has ADHD. Emily definitely has ADHD and has been on medication for that for some time. And if you ask me what are the lights of my life, I quite often say my nieces, Ruby and Emily. So I understand from their experiences.

With accessing support, the kind of support that they need, accessing education. My goodness. That has been incredibly difficult for them. The importance of getting the right support, getting the right diagnosis, but also people understanding what ADHD is and how it impacts on you or might impact on you. My sister, who is my younger sister was in her mid thirties when she realized that she had ADHD. And she said to me that when she realized that, her life made sense to her. And she also had had quite a significant period of being investigated for many different things. And now that she knows she has ADHD, her life has fallen into place in a very, very different way. My sister doesn't have medication, though. It's the therapeutic supports.

That have been, much more, her focus. Sorry. Right. So that's me. That's why I'm here, and, that's some of the the personal experience and passion that I bring to my work. So, what's NHS England? So I am hoping that we've got people from Australia online who may not know what NHS England is. And frankly, until I worked here, I started working here two years ago, I didn't know what it was really either. So it's not the government. It's what's called an arm's length body of the government. So we're we're we're attached to the government, but we aren't I'm not a civil servant, for example. We are an oversight body, I guess, for the NHS.

So we have a national team, and I'm part of that national team. And then we have seven regional teams. And we oversee the infrastructure of the NHS, which is organized into 42 different local systems, which are integrated care systems. And from those systems, you get primary care, which is like GPs, dental practices, other organizations that sit that. So hospital trusts, for example, community services. Part of those integrated care systems are also your local authorities who will commission and provide social care services and education services. And then you move on to patient and place level services as well. So NHS England oversees the biggest employment infrastructure in Europe that sees 2,000,000 patients a day. And what we try to do.

Is we try to provide guidance. We set budgets for the rest of the system. We will try to amplify issues nationally. We deal with the government directly. We have a mandate to do something, so we commission some very specialized services. We also will be able to issue, like, standard contract guidance, and we have some kinds of regulatory and oversight mechanisms as well. But we aren't the government, so the government sets our budget. And reforms that came in a couple of years ago really tried to devolve a lot of the power of this central oversight body NHS England locally. So there are some things that we would like to do.

So we would like to tell potentially. We might like to tell people, or, systems how how to do things, but we don't have the power to do so. So a lot of our work is around influence, guidance, provision of data. So we also, run national datasets, for example. But lots of the infrastructure for health care is is is local. I'm also NHS England. So we have separate infrastructures for the other three nations. So Wales, Scotland, and Northern Ireland, but, we work really, really closely with them as well. We're not responsible for medicine supply. That's an organization called the Medicines Health Regulation Authority. And, we're also not responsible for assessing clinical guidance. That's.

Something called NICE guidance, and I'm gonna talk to you a little bit about that later. So it's things that that I have knowledge of, but they don't really fall within my responsibility. So what I see my job as being is trying to really raise the profile and trying to bring in connections with really important other national bodies and influence local decision makers through conversations and conversations like this. So it it may surprise some of you and it may not surprise others that NHS England and also the department for health and social care who sponsor us and who are the the government body that that gives us our money and and sets the government policy, didn't have a specific ADHD program until this was set up last year.

So I know there'd been a number of questions, in the chat about a work that had been done in relation to autism. So, there had been an autism program for a number of years actually. And so through that autism program, there'd been, like, data collection that's specifically set up, specific training on autism, and a real focus, but there hadn't been any infrastructure around ADHD. And so in December of last year, there was, particularly, many of you will know, an acute medication supply issue. So our chief executive, Amanda Pritchard, asked me and my boss, the chief delivery officer, Steve Russell, to do some work on ADHD to try to understand issues around ADHD service provision because we were hearing from so many of you and so many.

Clinicians and service providers across England that things were not working. So we try to understand what kind of issues are we talking about? How long are waiting lists? We're hearing they're very long. They're probably different across the country. How many people do we think have ADHD? What's the kind of prevalence rate? Is there a greater demand for services now? If so, why? So we agreed four things that we would do. And I had a winter that was my ADHD winter where we looked at these four areas. We looked at all the data that NHS England holds on ADHD. We then commissioned some research from King's College London, and we wanted to understand whether or not issues that we were seeing in England.

Were comparable to issues that were being seen in other countries. Particularly this narrative that was very common that there'd been a spike in demand for ADHD services or people seeking a diagnosis of ADHD post COVID. We decided that we would review how ADHD services are delivered across England. And was there anything that was driving the way in which services were delivered? And what kind of outcomes were they giving people? And then the other thing that we did was we set up a clinical reference group to look into what we call them deep dives on ADHD related issues. So I'm going to tell you about each of those four work streams and what we found. So on data, there is no national data that the NHS publishes on ADHD.

And let me tell you a little bit about why. So people who have ADHD are seeking a diagnosis for ADHD will pop up everywhere. You may go to your GP. You may be seen through, a mental health service. You may be seen through CAMS. You may be seen in the community. And the way that NHS national data is structured is about the service in which you appear. So we have codes that are used. Those codes are not used consistently across datasets, and you can't you can't track a person across the NHS in the way that you might think that you would want to or or would be able to. So we looked at our community datasets. We looked at our mental health data sets. We did a lot of work on data on health care in prisons, and we've heard really powerfully.

About the prevalence of people with ADHD who are in custody, particularly youth custody. We we had some some data there that could help us in seeing some of the health inequality issues. But generally, we didn't feel comfortable with the data that we had to be able to give us an accurate picture nationally on the the issues in terms of ADHD prevalence, people seeking treatment, how long they're waiting, and then people who were diagnosed and what services they're in. So we thought people were being missed, and we also thought they were being double, triple counted because we know that people are bounced around services as well. So you might.

Be referred from your GP into CAMS. You might be referred in through three different other routes, and you will show up on multiple different systems. So you will see that one of our key recommendations is to to sort that out. But what we do have is some information that other organizations and that surveys have showed us. And we've also got local data that we can try and pull together that gives us a pretty good picture, but doesn't give us the kind of national data that we think we really need in this space. One of the reasons that we need this data is it helps to access some of the levers around well, first of it helps us to understand issues, but it helps us to access levers around funding. And when you know, for example, that ADHD.

Is as common in children as asthma, you start to change the conversation and you start to to convince people that it should be funded and viewed in a similar way. So you can see here that there's a massive variation in waiting times for access to services across the country. Many of you have pointed that out in your questions and comments. And then, you know, we've had surveys that pick that up as well. Interestingly, we do have data about the prescribing of medication, and our data tells us that in the last three years, there's been a fifty one percent increase in the number of patients prescribed. So yeah. It tells us a few a few things. We think there's a few reasons for that. So the work that that King's College did.

Told us actually that The UK is not unique in this in this case. And, interestingly, when Sarah was talking, she was talking about colleagues and friends in Australia saying, you think it's bad in in England. Come and see what it's like in Australia. So, yes, we found that across many many countries, the data is incredibly poor. And interestingly, when Kings did this work for us, they found that the data that they could come across was some of the lowest reliability of any studies that they had done. So so much of it.

Is not. It doesn't reach their standard of whether or not it's it's accurate or reliable. So what it tells us is there's just a huge amount more work that needs to be done. But from that evidence, the best quality evidence, it told us that they didn't think that there was an increase in prevalence as such. So people have always had ADHD, but it was more likely that people were seeking support for that post COVID. And then they did some work on statistics here. So you can see we we don't even have UK data on the prevalence in children, but NICE, that's the the organization I mentioned that sets out clinical guidelines. They estimate that it's about five percent internationally. We think it's probably the same here in The UK.

Again, that's the same number of the same percentage of children or prevalence in children as asthma. And for adults, we think it's about three to four percent, but that's across The UK, not just in England. And then you can see the only international data about prevalence in adults that they found to be highly reliable was in relation to Sweden. And then there's some data here in relation to the prevalence in The USA, Canada, and Sweden too. Then we pulled together a load of people who worked in NHS providers and people who provide the services and who commission it from national level to a very granular patient level.

And we found surprise, surprise that there was a massive variation in how services were delivered, but that that really impacted access and experience across the country. And so one of the reasons for this is there's no service specification as to how you ought to provide services in relation to ADHD. What you do have is clinical guidelines in terms of the diagnostics and the assessment and who ought to do them, but you don't have a service specification as such. We found people have so many coexisting conditions. So for example, considerable interlinks with anxiety, forty percent co occurrence with autism, for example.

Lots of people showing up in mental health services being diagnosed with anxiety and then down the line realize actually it's ADHD. But that was complicating the identification of ADHD and impacting someone's experience of services as well. And then there was a really significant finding around the fact that we haven't kept pace with the needs of people with ADHD. So services were not specifically designed for people with ADHD, but they weren't needs led either. So that just meant that people were well, they weren't getting their needs met. Wider societal changes. So increasing social media use. I mean, a lot of people talk about the fact that increased social media uses increased people's perception that they might have ADHD.

But what we found was that there was nothing absolutely negative that we found in relation to that, but just that it influences public perceptions about ADHD. So there were a lot of myths around that, but also it was really helpful in other ways. So, you know, people like my sister who understood more about her ADHD through social media would then be more likely to seek help. So it was just that wider societal change and the increasing conversation that had shifted people's, I guess, health help seeking behaviors. And then a really, really significant finding around the impact of education policy and processes on access to support. So many of you will know that.

There are schools that are fantastic in thinking about the needs of children with ADHD or more broadly with special educational needs or learning difficulties, neurodivergent. However, some are not so great. Some before they give access to support for needs, they will require a formal diagnosis. And so that was driving the need to access services and need to access services, specific services, and quickly. The clinical reference group that we set up looked at six areas. We did twenty twenty hours of deep dives, over the winter. And we looked specifically at whether, NICE guidelines, those guidelines I mentioned for diagnosis were working particularly well. Then we we badged this umbrella neurodiversity.

So we were thinking about what actually should you be looking at ADHD separately, but then what's the what what is the overarching umbrella we might want to be considering ADHD within? We looked at prescribing. We looked at health inequalities, which was a really, really significant piece, and that looked at some things like access. It also looked at co occurrence in a way. So we looked at prison population. We looked at addiction. We looked at people with ADHD, particularly women. Their the likelihood that they, women with ADHD are more likely to have been victims of sexual violence. We found some studies in The US around that and the interlinked with complex PTSD, for example.

This is something called secondary gain. So people were were really concerned about some of the new online tools, for example, coming into the market and being marketed by drug companies. So we looked at whether or not there was anything there that was driving clinical behaviors. And then we we looked at treatments that were therapeutical and not about prescribing. You know, there's there's so many people that need to access treatment either in addition to medication or instead of medication. And we found these three three things. One of, my team, who has ADHD came out with these really brilliant ways of, of of summarizing all the twenty hours of discussions that we had. And so we found that it was incredibly.

Important for you to be seen by the right person on the right pathway and with the right support. She coined something called converging spaces, which was if you have ADHD, the impact on so many other areas of your life like education, employment, interaction with the justice system as either a victim or offender, all come together. And then paradox of care of how many people were seeking treatment who were then finding that, their, attempt to get treatment was actually exacerbating issues for them and the fact that they couldn't access medication. They were on waiting lists for sets assessments for, you know, five years meant that seeking help had actually become detrimental to them. So all of that work came together.

And one of the overwhelming findings was that we we just need to improve user experience and outcomes. And many of you might think that that's obvious, but it was really, really important for us to be able to document this and present this to NHS England's public board in a report, which you can find online, which I wrote, that, really set out how stark the reality is for people who who have ADHD and their families who are seeking treatment. One of the really key things that came out though was that if we wanted to make fundamental changes, not just sticking plasters over ADHD services, although we think there are some things that need to be done really, really quickly. You need absolute collaboration with.

People with lived experience and their families, but across the public sector. So local authorities, education, justice system, and those working on employment policy, benefits policy. And we learned a lot from colleagues in Wales and Scotland. So Wales had done some really fantastic work had come to the through a big public consultation, the view that they needed to have a neurodivergent model. So what we committed to do was four things. So we committed to look much more detail about commissioning arrangements, outcomes, experiences. We have set up a network for providers. We run a regional engagement forum. We have spoken to nearly every ICB across the country in the last few months and multiple, multiple service providers.

We now have a really significant bank of understanding of service provision, some evidence about things that work well, some evidence about things that don't work well. People have different views about the models that should be put in place, but one thing that comes out really, really strongly is this access to early support, upfront triaging, enabling people to access nonmedical treatments very early on and peer support, codesigning that triage model, that front door model with people with lived experience, their families, and also local authorities and education providers is the kind of model that's worked most, worked best, we think, in areas like Derbyshire, West Yorkshire, and Hertfordshire.

So we've also looked at how we capture and share best practice, so that's setting up a forum. Someone had asked a question about thinking about how we can use some of our contractual levers where we don't think that a provider has acted in accordance with their contracts about service provision. So we've been setting up webinars for regions and local providers to upskill them in commissioning and how they use contracts as well and some of the remedies where they think that services aren't being provided in a way, that they ought to. We've been developing a national ADHD data improvement plan, is really, really important. And we've started to put new codes in for.

The current infrastructure for capturing data on ADHD. So we should have a return next year for the first time in the mental health dataset, which is brilliant. And then finally, we just said that we would set up a cross cutting task force. So we were so impressed with the experience that Wales had and the results that they had that we asked professor Anita who is a professor at Cardiff University and led a lot of the Welsh government's work on neurodiversity and ADHD provision. And she is a child and adolescent psychiatrist, and she is a specialist in ADHD. She's overseeing that task force. But we made sure that we had local authority chief executive, Joanna Killian, involved in that work as well. And what we have been doing since we.

Appointed Anita as chair, a few weeks after that, an election was called. So we had to pause our work on setting up the task force. So post new government, we have been making sure that the infrastructure of the task force is aligned with their priorities. Sarah said something really powerful when she was talking about using the levers that we have to ensure change. And so what we really need from this task force is we need the government to support it, and it needs to link into the infrastructure that they are setting up with their, what they're calling, missions. So they've got key missions on mental health waiting lists and special educational needs and disability provision in schools.

So we've been working really closely with our government colleagues on making sure that the task force's remit and infrastructure will be able to feed into their new mission board infrastructure. So we should be able to say a little bit more about that in the coming weeks. But before, the government decided what it wanted to do in relation to the infrastructure of the NHS, it commissioned Lord Darcy to do an independent investigation of the NHS in England. And it had a significant section on ADHD, which we contributed to. And really importantly, Lord Darcy emphasized the the importance of the task force in our work. So now that we know that we have that really important.

Significant government support for our work, we started the first event, and we will start to appoint members to the task force. We ran a lived experience event two weeks ago to shape the membership, the focus, and finalize the terms of reference of the task force. And it focused on what support for those with ADHD should look like, and it won't be a bit surprised to anyone that some of the key findings were in relation to support needing to be needs led, offered early, considerate of individuals and families, and really be holistic and that that we need to take a whole system approach to the way in which we are thinking about fundamentally.

Changing through the recommendations of the task force, which will work over the next six months to a year to really deep dive into ADHD service provision, but policies and processes across society that need to be shifted, improved to improve access and outcomes for people with ADHD and their families. So before I go on to questions, because I know lots of you do have them, I wanted to just share a little bit about what you can do. So for those of you who are in England and you want to be engaged, stay engaged with organizations like ADHD UK because they will be really critical to the infrastructure of the task force and to the work of the task force.

We will be able to provide updates as well. We're planning on doing a call for evidence that's much wider than our early lived experience sessions. So if you want to be involved in that, please have a think about that. Keep your eyes peeled, but ADHD UK will be a significant part of that task force infrastructure. And if you're not in England and you're thinking, what has my government been doing? We should be doing something like this. Take a look at the web pages on NHS England's work on ADHD, and I can share the link of the paper that we presented to the board and really start to talk about and agitate for shifts in conversations around ADHD service provision. One of the things that.

Neil and I have talked about, and Neil mentioned we met at a conference, an NHS national conference earlier this year. We talked about the fact that there had never been a discussion on ADHD at a national health care conference like that before. That's really important. So, you know, think about what you can do to ensure that you're having conversations about national strategies around ADHD where you are as well. And then one of the things that I wanted to finish on was the importance of our neurodiversity staff network at NHS England. They have been absolutely critical, and one of the brilliant co chairs helped me beyond words with this presentation and thinking about, how I might be able to present it in a way that would be.

Best for people with ADHD. Massive shout out to you. You are on the call now. And I've got this information about the staff network, and I want people to think about whether or not they have a staff network where they're employed. So there's just some information here about the staff network, that we have in NHS England, how it started off. It's a formally recognized network within NHS England, and we've got over 300 colleagues. We have a number of people who have ADHD who work on the program. It's really important to us. But you can see here some of the brilliant work that that the network and its chairs, co chairs do. So peer support resources. They sit on our internal program board as well. So, yeah, I thought that might be.

Of help to people who are thinking about what they might want to do. So I hope this has resonated with you. It's given you some information. I'm here to learn as well about your experiences and to be able to take those on board as we to continue to shape the work of both the program I lead and of the task force that I support. So I am going to stop there. Thank you so much, and I am sure there are lots of questions.

There there definitely are. It's as yet, that was wonderful. Thank Thank you so much. I can't thank you enough for being here, for doing this, for sharing what you've been doing. It's it's obviously a huge deal. Have, I think, according to the ticker I have above the the screen, we have 13,442 people currently. Wow. Especially for a conference. Our conference aren't famous for that. Large large numbers of trainees. That's that's that's that's absolutely amazing.

Only some of them are my family and friends. And.

It is delightful that, yeah, you you it's we're straddling US, UK oh, sorry. Yes. Australia, UK, and you also know. And when you've agreed, you which was wonderful. You said, yeah, can we have a time where it'll work for for for both, which was obviously we could do. So it's wonderful. The the work you've done is clearly thorough and very deep. Like, I can see the need for it. So, like, from my side, like, the the sort of agony of, you know, talking to people who are waiting and the struggle and the challenges, like, I want everything yesterday. That's not just my ADHD speaking. But I I also can see that the only way you get change across a very large organization.

Through the regions is you've got to prove the case, you've got to prove the points, you've got to get the facts, and that you've and that, yes, what you've, you know, are are doing. And it's it's it's a window into a world that I'm not that familiar with, and it's it's wonderful for you to open that and and share it. It's it's a big deal. And also, it's a big deal to share this change change happening. Right. So do you go over to questions? I gotta do I gotta do this because I can't stop myself. This is Phil's comment. He's I'm done with the mental health team. I would like the same one. Just oh, it's a it was nice. A lot of questions into the into the main quest what a lot came beforehand. Some clearly very, very deeply thought through.

The what should our expectation be? Like, you know, the BBC did a report recently. It showed 6,000 people waiting in the Sheffield area, and they'd only seen three people in the last year. Yeah. An effective wait time of two thousand years, which even the BBC was kind and said, like, we we know that's not really two thousand years, but, like, it's pretty terrible. What should our expectation be on change, on waitlist becoming reasonable? Like, where where I sit, so I I impacted by the medication issues, went to my GP, said can I have a referral to review that and be able to have the option of alternatives? And I was told, yeah, sure. Oh, actually, no. It's closed. There's a two year wait and they've closed for any new referrals. So.

We expect it to open in two years, at which point you can join back in the queue. I mean, the crisis was then and there. And that's not uncommon. And I suppose in I might as well do all these. In Oxfordshire, I I presume you know this. So in Oxfordshire, the GPs have come together and said the ICB has stopped providing support for them on the annual reviews, and they're about to stop. Anyone who's coming up to their annual review will find their medication stopped from their GP because they can't follow the NICE guidelines and they feel compelled to stop. The I mean that's pretty awful. And then the BBC also showed that there's a massive failing for children where they age out of CAMS at the age of 18.

And there's a large percentage are waiting two years, often having medication that was supposing them withdrawn for that period. We snatch defeat from the jaws of victory, and they're just lost. It's quite common for people, particularly in teens, to pause their medication whilst they're trying to work out who they are. And then they can't restart because the wait time for kids up to five years, so then they're just lost. There's so many failings. So what can we expect in terms of timeline of change?

Yeah. There are so many failings. That that that that's that's absolutely right. And you we know across the country that people are are are waiting extraordinarily long times and that people are also being told, one, they can't access services because waiting is to close. And then the medication supply issues just exacerbated that considerably. What I can point to is report. And what that finds is that there are really significant issues across the NHS in terms of infrastructure and access to services. And as I said, there's a whole section in there on ADHD, which we provided all the information on. So it does paint a pretty bleak picture of where the NHS is in terms of ADHD service provision and just more broadly. But.

There's action in place to turn it around. And so the the first thing I would say is the fact that this work exists is hope someone is looking at the issue. They weren't looking at the issue a year ago. Second is realistically to turn around wait times like that. It's it's it's going to take some time. So we're looking at what could be done immediately. So we know that in like Manchester, for example, it's looking at a triaging practice of how you might assess people in terms of required for medication and then triage fast tracking people who require medication and then triaging them off to access other services. We know that there's lots of areas looking at many different ways that they can try to.

Fast track or or cut into waiting lists. So Hertfordshire, for example, we know that for their children's services by redesigning and doing their front door triage process, they've been able to cut weights to under two years. And that, I mean, that is still extraordinarily significant. But the work that they have done has meant that they have made a massive dent in their waiting lists. But it requires it requires a number of things. It requires investment. We've talked about NICE guidelines. So the infrastructure that exists for the moment at the moment for clinicians to follow in terms of diagnosis. It says there's a condition that sets out that specialists should undertake assessments for ADHD.

That's interpreted across the country. There are questions as to whether or not that might be something that that could be reviewed. We are looking at whether or not any technology can help in terms of reducing waiting times. There's a huge amount of work to do to turn this around. The task force is looking at the fundamental changes of things like not just service design, but thinking about the fact that that sorry. I just lost lost my train of thought. If you want to redesign service models, you need to do that in coordination with education policy, for example, and really, really thinking about holistically what is it that we might be able to do to better support people who seeking a diagnosis as well.

Sorry. I'm hoping that answered answered the question. It's there's there's a long road to change. There's a long road to change, but there are things we can do.

Yeah. The when you talked about you mentioned Yorkshire earlier. There's one part of Yorkshire which has removed the ability for people's user rights to Choose, triaged, and and many people were essentially put on and one group people got have the potential to be seen, although very delayed as they had to work through their current their old wait list, and the other were basically never gonna get seen. And that sort of triaging of fails one part of the community. And it also relies on people getting to crisis, and you're kinda like, we really like to get people seen before they hit crisis. I've got a pretty serious question to ask. I I have to ask you. So we have the Matthew Locke's parents speaking tomorrow. Their son.

Had ADHD and had a very, very very challenging diagnosis process amongst other conditions. And this is roughly it's been just over a year since he took his own life. They came to see me a few weeks ago. I've been on Good Morning Britain, and I talked about the challenges of ADHD. I try and mention the challenges around suicide. Make people aware and it's also to change a lot of mindsets that ADHD isn't a particularly tough condition. Once you hear those statistics, it usually changes your mind. The statistics being that one in ten male boys with ADHD were at some point trying to take their own life, and it's one in four, one in four women or girls. They said to me, we just wish we'd known.

We wish we'd known how tough ADHD was. We wish we'd known there was a risk of suicide and we didn't. And they don't mince their words. Said we think it could've been different. Their question to you is why is the on the NHS information page on ADHD, why is some real the challenges of ADHD not talked about in particular, suicide not talked about. Over to you.

So we're reviewing our web page at the moment, and I'm really happy to take that away and make a commitment that we will look at at at adding that. I'm very happy to do that. We I I can see it's out of date.

Thank you. That's mean a lot to them. Means to a a lot of people. Like, it's it's a big deal. And it is a it's an awful balance, It's what we're gonna have to talk to. It's in our next section is all about the positive parts of ADHD that we know that people can thrive and that we're not saying that people with ADHD are in that place. Everyone with ADHD is in that place. And but it's it's talking to that that that complexity. Mhmm. Yeah. It's I think but it is like, I recognize that part that part, you know, of the of the challenge. My cofounder also asked a question. I need to get that that in or, like, it'll be easy to beat me up. It'll be awful. He wrote, obviously. He's a very kind and nice person.

Do you see that the Commission for Assessment is going to be integrated with the autism pathway? He is a consultant pediatrician and and the rest of the neurodevelopmental pathways?

It could be. That's definitely one of the options that the task force will look at. And that's what they, I believe, are doing in Wales. So if you look at Hertfordshire, what they have done is they've got like a nine box model. And so as you go through the front door, you go through you might have a straight ADHD, straight autism, kind of mix and more complex. And so you have you have three different pathways, but you go through the same front door. I know that sounds like a a strange kind of terminology, but that was codesigned, which we think is incredibly important with families in Hertford Shire and people with lived experience and local authorities as well. So that's the kind of thing I I wouldn't.

Well, we have been looking at within NHS England and the task force will definitely be looking at bringing Anita's. I mean, There's a that kind of thing, it seems has a very strong argument in my mind as well because, you know, we have good data suggesting forty percent of people with autism have ADHD. So Yeah. Looking directly at that. But obviously, as a community, we're much, much larger, two point six million to seven hundred thousand. And when you look at the maths the other way, it's fifteen percent. And so, you know, that there being a very large group of people who are ADHD only. And if we were to look at doing, always doing the full suite, there isn't the resources talking of which.

So many people have to have multiple ADHD diagnosis. I've had two, one private, one NHS. Spoke to someone recently who had three. And they've made had the made the unknowing mistake of moving in London, but into three different areas. They've gone west, south, east. And each time they'd lost their medication for a year at least. And they actually talked to me saying, I can't do this again. Like, it's I'm I I it has wrecked my life. Why don't why can't we have some kind of ADHD passport? It's just a ludicrous waste of resources to have, like, three, two like, is that something that's being looked at?

Yeah. I guess there's a there are complexities, I guess, around diagnosis undertaken outside outside of of the the NHS and how you bring that in. But it's certainly something that we have heard, and I imagine the task force will be looking at that as well.

Yeah. And certainly, I think one of the things I suggest is that the idea that people jump the queue is not but it once they get to the end of the queue, then reviewing that assessment and accepting it or or not, like, some kind of process doesn't reflect that there's something that's already happened. I do recognize the complexity, when we've got people, it's insane. In schools, we've had a question posted. We seem to have a very unique quirk within neurodivergent, particularly within ADHD, that we have a nonmedically trained group of people in charge of the referral, and that's teachers in charge of the referral of children. And there are six you know, 30,000 schools, 600,000.

Teachers, and some of them are, frankly, completely bigoted against ADHD. I spoke to a parent who's not and she's taking her kids in first year of school, new class teacher. Hey. My kid has ADHD, has dyslexia. I need to take them out early on a Thursday to get into a tutor to help them. Teacher looks them in the eye and goes, I don't believe in ADHD, but I believe in dyslexia. You can imagine how the year went. It was absolutely awful. That person is responsible for identifying and referring children. It is a real quirk that we have and many GPs won't refer without the school. That's pretty common as well. So it's a real quirk that we have outsourced.

And and that medical provision to teachers, to schools, to non medically trained people who get negligible levels of training in this. Where does the NHS sit on this? Because they've outsourced this. Should what where is their consideration on this issue?

Well, again, that's that's something I've I've heard before, and it's one of the reasons that we were so clear that if we had a task force that was going to be set up, it had to be completely interlinked with any thinking around education policy and processes and that we needed to utilize these integrated care systems that exist, which is a combination of local authority and NHS to think about how policies and processes should be amended. So we've been working, as I said, really closely with our colleagues in department for education, thinking about the government commitments in relation to reform in schools around they're calling it a send provision reform piece. So I would again be.

Pretty certain that this is the kind of thing that the task force would be looking at, and it's the kind of thing that people have had in mind when they have been sharing with us the real importance and interlink and interdependencies between education policy and processes and NHS provision. Absolutely have heard that that's an issue from many people before.

Thank you. I'm just looking at my notes. My notes from Richard, think, father was also around, around addiction and ADHD. Yeah. The other aspects around ADHD, there's a it would be nice to start thinking about. I can't tell you how terrified I am, the idea of, say, getting something like diabetes or some kind of condition that requires monitoring and me and ADHD. The probability of me forgetting that I have to do this is is enormous. And actually I recently spoke to someone with diabetes and we've had some contact with main diabetes charity wanting to look at this. But that second intersection of what are we doing in with individuals with ADHD who are gonna struggle on medication pathways and how do we support them.

Is is probably second sadly, it's second balance of the ball. We've got some other stuff ahead of it, but I just wanted to make sure I raised that. Yeah. It's.

It goes to the the wider point that our services just aren't set up for the needs of people with ADHD, that underlying infrastructure of you're looking for diagnosis, assessment, medication, that's that was a lot of the view that we got from particularly the most recent lived experience session that we had. And so wider infrastructure doesn't think about.

I guess not. It is it is gonna be, I think. Yeah. And obviously, like, it's the basics right now. It's like, I'd like to go and see someone, be assessed and learn about this from what get a diagnosis or not learn what my issue is, and and then get a get treatment. You covered this earlier slightly in your slides. I've just talked to the fact that there's a the fact that there's no support beyond medication. It's like Yeah. Bill or not, that's it. Otherwise, off off your chart, and that's a huge issue in itself. Slightly over on. I've gotta stop. So there's a I think you're really.

Amazing for coming and doing this. And I'm I can't tell you how grateful I am for it. I I hope you felt that it was valuable to you. I know you put a lot of work into it. For those that I was having the privilege of knowing, so Catherine has been sitting, wait, watching conference for for hours.

I wanted to hear I I want to learn as well. That's the other thing I would like. I'm really here to to listen and learn, and everything that I have heard today, I I will take back. So please keep telling me what I need to know, what we need to know. The absolute commitment that Anita and I have leading this task force work is that it is about coproduction. It has got to be underpinned by lived experience experts by experience. Or, otherwise, we are not going to make the changes and have the outcomes that we really, really feel passionately about. Anita's brilliant.

Yeah. And it's whilst I wish it was a magic wand, which just Just not. But what I can see is the work you're doing is the groundwork of change that that that creates change. It's It is. It's actually wonderful to hear. It is wonderful to hear. We've now got 15,357 people watching, which is, I think, a pretty good chunk. Catherine, I have to let you go. So Thank you so much. So, so much. And I appreciate really everything you're doing.

It's Oh, and thank you for everything wonderful to hear. You are doing and have been doing because your work has really shone a light on the experience of people with ADHD, and it's one of the reasons that this work exists. So thank you. I appreciate that a lot. Thank you. Have a great rest of your day. Thanks. And your family My mom. My dad.

Goodbye, Catherine. Thank you. Bye.