I'm absolutely thrilled to have Hilary Conroy from York Disability Rights Forum here. They've been doing incredible work and important work for, well, frankly, for the whole of The UK, but particularly for around York York. Let's bring her in. Hello.

Hello, and thank you. It's nice to be here.

Well, thank you. And I can look first question. What the hell is happening? Do you wanna start with the pilot, and we'll talk about what you've been doing? Yeah. There's a lot, isn't there? So on the March 27 year.

The local Humber And North Yorkshire Integrated Care Board made the decision to start a pilot to restrict access to our autism and ADHD assessments in York And North Yorkshire. So this was quite a sudden decision that they made. We found out about it seven days before it happened, so it was quite a sudden shock to the system. And the pilot is restricted by three criteria. So to get an autism or ADHD assessment in York And North Yorkshire, you need to meet one or more of the three criteria, which are immediate self harm or harm to others, but you need a mental health assessment and a crisis management plan in place, which a lot of people absolutely do not have no matter the state of their mental health.

Number two is risk of being unable to have planned life saving hospital treatment, operations, or care placement. Three is imminent risk of family court decisions determined on diagnosis, for example, family breakdown and a custody hearing. So really extreme crisis criteria, that really didn't make any sense because one of the previous criteria was the people were stable enough in their mental health to undergo assessment in the first place. So we had a lot of shock and confusion associated with those things, and it obviously meant that quite a lot of people were now not eligible for assessment. So the thing that they put in to to make this acceptable in any way according to them.

Was an online tool. So when people were going to their GP to say, can I have an autism or ADHD assessment? They would get access to an online survey called the Do It Profiler, which there's a lot of things to say about that. But it just in a in a nutshell is a lot of questionnaires. The first one had something like 78 questions that you fill in online on your own. And then you get to the end, and it pops out a report that says things that people already know about themselves generally, that they have certain traits of neurodivergent conditions, not just autism and ADHD. It includes dyspraxia, dyslexia, things like that as well. But it then says, you know, nothing. There there's no further involvement. You don't get to see a person.

It's all kind of self help tools. It gives you a lot of PDFs to read through. One person had 68 PDFs to read through. And we were really alarmed with some of the advice being given because it was very ableist and really didn't seem to understand neurodivergence at all. So that's kind of the whole pilot in a nutshell. Oh, I should say it does also change the eligibility criteria for Right to Choose as well. So if people were going to their GP and asking for an assessment for your Right to Choose, that was also being restricted is also being restricted by this pilot. So we had huge issues, as you can imagine, with people being very suddenly thrown online.

Which, of course, if you talk about digital exclusion at all or, you know, people needing support to get through kind of surveys or forms, you know, maybe people with autism and ADHD, for example, this isn't a a workable tool at all. And what we do know is that in the first few months of the pilot, there were a 250 people registered on the profiler, and only a 126 of those were moved through into triage at the retreat. So that is a 90% rejection rate that we are working at. So, yes, it's awful.

And this is look. And why it's one, you know, one of the reasons it's awful is, obviously, it's awful there, but this is something that other ICBs may well be looking at. And That's really our concern is that we're a test case for sure. Yeah. Because it's saving them loads of money. Of course, it is. You know? Yeah. And, you know, and it obviously does save money to not treat people. If you're a medical institution like me, it's just kind of against against the goals. I do want to recap for people because I think they've really got to understand, like, that criteria, those three things, because they are shocking. So risk of self harm, so risk of risk risk of suicide, but also having those thresholds in place that you've got to have a mental.

Health assessment. You've got to have a crisis plan in place, and those things have thresholds as as well. So I'd like to be able to get and the real horror of this is that we know. Like, we we we know of so many people and and, you know, recently, the majority of funds to this to ADHD UK were from parents whose children have taken their own life. The idea that people have to get to that state to get care is outrageous. Yeah. The entire perspective of preventative care is just outrageous. And.

The other one one of the other parts, which is the family court. People got to understand that. That's where you're in court and your family is looking to be broken up. That is your children being taken away. That's what they're talking about. They're saying you can get to the point where your children are at risk of being taken away. We still won't treat you. Like, but once you get to the court where it's becoming a real a reality and, like, all the damage that is done to that point, like, and allowed to happen. It's it's it's outrageous.

It really is. And I think if you look at particularly, the mental health system locally is in in a shambles of its own. You know, we we have a really problematic mental health system and access to crisis care at all. I mean, our local health watch York have been amazing and have done a report on our local crisis care called breaking point, and it really is a a difficult read. But it is pushing people to those extremes, and it's certainly right at the beginning when we were introduced to this right at the beginning. We said, you know, people will die as a result of this. You know? What what are you doing to to mitigate any of the risk that you're creating here?

And they just shrugged. They had no interest in that really. This came about because of a contract issue, a financial resourcing decision. So there is no patient care underneath this decision that that you know, as much as they say there is, the practicalities of it is that the the amount of referrals that they were getting, if they had continued, would have overrun the length of the contract of the provider. That's that's what this is about. So it is it's really difficult to to be on the human end of this where we know our community are much more likely, to have severe mental health consequences.

And particularly when you give, when you take away hope, you know, so one of the things that people say is that they know that the waiting lists are really long. They know they'll be waiting years, but they know that they'll get to the top of the list at some point so that it creates a a bit of hope to that someday this will happen. And, you know, it's not great to wait a couple of years or five years or whatever it is. Of course, it isn't. But to not have that at all for that hope to be completely removed is really damaging and really problematic.

One of the successes I think you had have had is that initially, were just if you didn't pass the profile, that was you off off the list. Right? You were just out. Yeah. You challenged that.

Yeah. Absolutely. I mean, we've challenged it all from day one. We found out about it, as I say, seven days before it came in. GPs only found out about it a month before it came in. This was a, you know, back of an envelope, you know, discussion of what was gonna happen. But I think in terms of the ways in which the profile the the situation has changed over time. It hasn't changed a huge amount, but people weren't given any information. People thought that they'd been put on a waiting list when they hadn't. So there's a huge amount of wondering and not knowing, which is an awful situation to leave people in because GPs also don't know the information.

So they're they have no one to turn to. The retreat have never heard of them because unless you get through to the triage of the retreat, you're not on a list there. So they're phoning the retreat. They're phoning their GP. They don't know where they sit. And the reality is they don't sit anywhere. So in York and North Yorkshire now, we have we have moved them in the sense that they they're now saying that you can have an optional waiting list, But that means that we now have three waiting lists. So there's the real waiting list. Waiting list number one, which is you are waiting for an assessment. Your form has your referral has been accepted by the retreat who is our assessment provider.

So it's been accepted by the retreat. You are waiting to be assessed. So you're waiting for your first oh, this is a handy flowchart, which is on our website. So that's waiting list one. That's people who were referred before March 27 this year. They've received a letter to say that their referral has been accepted, and then they're on the waiting list one. That waiting list is around about twenty months, though we don't have incredibly up to date numbers on that just now.

If they have been referred since the March 27 in regards Can I just, sorry, can I just clarify? Wait list one. Yeah. That's the priority wait list. So those are people who are suicidal who are in family court.

No. No. No. So that is the idea behind the pilot is that, oh, we get to prioritize those who are most at risk. Yeah. But, actually, none of those people have been seen. Those a 126 people have not been seen in the last six months. So even though they are targeting that crisis point, that's not the people that they're currently seeing. What they're doing is they're working through an old waiting list of chronologically ordered referrals. Our best guess for the 126 at least that have been put on that waiting list is actually waiting list two because they're waiting to be triaged by the retreat. The referral hasn't been accepted yet, so they're not on that waiting list. And you'll see if you if you look at waiting list data around the country.

They will always only use the wait from when it is accepted, not from when you put the referral in. So if you're on waiting list two anywhere, that wait to be triaged, that wait for your referral to be accepted, that takes loads of time. And for us, through people feeding back to us, that waiting list two takes fifteen months from referral going in to being accepted onto waiting list one, which then takes another twenty months. So that's the bit that's getting missed in all that data is that it's only when the referral is accepted that you start timer.

And, obviously, in our situation, we have an extra one that doesn't mean anything, but I'll get on to that. Okay. Go on. Yeah. I interrupted. Go for No. No. That's fine. So, basically, since the pilot came in, if you have met one of the three criteria, some people will, they haven't been seen. That's the as far as we're aware, nobody has been in touch to say that they've been seen based on priority. So we believe that they are on waiting list two. They're waiting to be triaged in the same way that all of those referrals are waiting to be triaged. It's about a 600 people in that pot right now. But if you didn't meet any of the criteria, which is the vast majority, the 90%, you're allowed now to opt into a waiting list three.

Which is just waiting. There is nothing at the end of this rainbow. It is an absolute nonsense as far as we're concerned. But they're saying that you can remain on a waiting list so that if capacity increases or if you deteriorate and meet the criteria, then you might have access to the other waiting lists. But re realistically, this is just to pacify people, to get rid of, you know, the the fuel and the anger and the the kind of stuff that has gotten us to the point that we're at the moment.

I also think you my understanding is that you did a good job on highlighting that if they weren't people weren't being put on the list of any sort, then that actually did fail to fulfill the obligations that they must must offer a service. And, also, as soon as you don't offer a service, there's another pathway that emerges. So if a service isn't offered in your area, you're allowed to do an individual funding request. And Yeah. So if they put themselves in that perks and that that isn't from a from a local ICP perspective, it's much worse than Right to Choose because an individual funding request, you can go anywhere. You don't have to go NHS. You can go private. You can go to and it's used actually to fund more.

In different cases, so fund treatment in other countries. Like, it's that mechanism. But and that's because under the NICE guidelines, there is a right to an offer of an ADHD assessment. And if it's not offered, you don't have the right to say, well, to go elsewhere. And we've we as a charity have certainly helped people do that. And actually, often, we've well, in some circles, we've used the ICB. We've used the individual funding request to the ICB to uncover the fact that in that case, in one case, a GP was lying and saying that we don't have an ADHD service to try and prevent someone from requesting a referral.

And so when they went back, the GP then said, oh, actually, we do. It's just overwhelmed. So we tell people we don't. I mean, the kind of things that are going on in the NHS, that that's an example of. And then obviously what's happening with you is is an example of this this huge problem that ADHD, we are a large population of people. We are two point six million people in The UK. Yeah. And we were only formally recognized in the year 2000 for children, 2008 for adults. So, of course, there's an overhang. Yeah. And, of course, we didn't go from zero to hero in 2000, 2008. There's been and partly a pandemic, partly just more people around, you know, getting to that critical number where people are now talking about ADHD.

And a number of people are getting over the stigma of it to talk about it because for a long time, have been quiet out of fear. And so people are coming for it. People are talking about it. And a whole lot of people with ADHD are going, wait. What? What? Oh. Like so, you know, for example, I didn't think I could have ADHD because I was like, well, sometimes I focus hugely. I focus for hours and hours and hours. I can't have a focus, you know, I don't have a no focus problem. Yeah. And of course, focus is an aspect of ADHD and I know that now. But like then, I was like, that's the reason why I can't be me. And those kind of but when you talk about the racing brain and the challenges of that lack of control or focus.

People recognize it themselves, and then they come forward. And that's what's happening. Right? Yeah. But it is and some ICBs, and for those who don't know us, ICB is the new name for a CCG, which was the new name for a new Yeah. But it's each region actually, technically, there are NHS regions too. So each area of the NHS, it's sort of basically the top organizer, the commissioner, is the ICB, the integrated care board. And then the trusts do the work. So they're generally a hospital, a hospital, or hospital group. They can also be private organizations. As in your case, the retreat is a private assessment provider. The ICB makes those those decisions, and so some areas have gone right. We have an increase in ADHD.

We need to meet the need of our population. We will increase what we're doing here. And others have gone, oh, like, you know, we need to reduce our serve you know, we need to reduce demand. And frankly, I think we've talked about this before, and I feel very strongly that, essentially, this wouldn't happen to other conditions.

Yeah. We're we're an easy target. Right? We're a soft target. We're a soft target. But we're not the first either. Stigmatized.

Yeah. Like, we have, you know, we have to fight articles in newspaper. Does ADHD even exist? You know, we have those those battles. And so, you know, an an organization can take advantage of of that and then treat us badly. And it's a horror that it's a health care organization treating us so badly.

Yeah. And I think just to add to your dates as well, you know, autism and ADHD couldn't be diagnosed together until 2013, and the presentation that is more often the presentation in women for ADHD wasn't particularly recognized before twenty seventeen, eighteen. So we're looking at a an incredibly historical inequality issue that is coming to the fore now quite naturally, and I think the pandemic played in because it disrupted a lot of routines and and ways that people were coping as well. People were falling apart and wondering why. But I think the the ways in which people have responded to it is is incredible. I think you're right in terms of we are an easy target for some savings.

And, you know, we're not the first. If you look at trans health care, for example, they've been down this road already, and we can see where we're going if we continue following them. So it's it's it's kind of a who's next as well. You know? Who's gonna be the next target on the on the cost saving measures of the NHS as they fall into the pit? It's it's a race to the bottom.

And I and which is why, you know, what you've been doing and we're gonna we need to talk about the the legal case in in a second. I do just wanna point out to people, like, one of the fundamentals here is that let's say let's say look at physical health care. You've got an emergency service within NHS A and E, and then you've got more regular service. Go see your GP, get a referral. And what's happening here is a conflation of the two completely wrongfully. So you've got those three criteria, which are emergency criteria and instill and those are not being now treated as emergency. They're being treated on the regular path where you've heard people aren't being seen for they're not even being seen yet. And it's Yeah. You know, projected.

Fifteen plus twenty months. Think it's not fully known, but they're not getting that emergency care. But in doing so, what's happening is the people who need regular care need an assessment, but it's not an emergency, but it is life changing and very important. They're being deprived of it. And if regular care becomes emergency only for anything, for depression, for anxiety, if we take the mental health conditions. It's a huge issue. And if this trots down along the NHS, it's a huge issue. It's a problem for everyone in almost every arena. Yeah. I mean, it just we'll treat the menopause only if you're suicidal. Like Yeah. Yeah. Yeah. Like, we would be met with outrage. Like and.

We can't allow this part. Now you have done something wonderfully brave in that you've done a crowdfunder, go to the website and contribute to legally challenge this. So could you tell us a bit about that? Yeah. So we we have been challenging it throughout.

You know, there's plenty. If you look on our website, it's ydrf.org.uk. There's a special page dedicated to everything we've done. So it's it's getting a bit big now and probably a bit hefty, but you can see everything on there. And so we've been challenging it and trying to get our point across through all of the different avenues that you would think might hold anybody to account for for such a a kind of wild decision. And we just kept coming up against it's not working. It's failing. When it was first introduced, it was a three month pilot.

So everybody just kept saying, oh, well, it's only three months. You know? Suck it up. Basically, you can go back to your GP after three months. A lot of people didn't go to their GP in that time because they thought they'd just wait it out. And, of course, then we found out that they were going to extend it for nine months, so it will be a year of a pilot by the end. So it's ending in March 2024 now, which it was quite the decision. So that decision was taken well, it was taken in June, but we found out about it on the July 14 officially from the ICB. And, basically, at that point, we tried everything. We tried everyone that we could think of to hold the ICB to account for what they've done, and we got nowhere equally.

So everyone kept telling us pretty much there's nothing we can do. The ICB monitors itself, which is alarming for everyone, and everyone should be alarmed by that regardless of neurodivergence or not. But we we felt that we had to then respond with some kind of legal action because we felt the law would be the only place where really that their law breaking would be taken into account. Right? So we set up a crowd justice fund, which is still open, and it is it it was amazing. I mean, the ADHD community, particularly ADHD as females podcasts were incredible in in getting the word out to the community and getting that kind of energy behind us. And we got up to I think it was £7,000 by the time we needed to do something.

And we we had a legal team. You have to have somebody that agrees beforehand. So, our legal representative, and a wonderful lawyer there called Jesse Brennan. And we worked with her, and we got some very clear advice right at the beginning that because we wanted to go for judicial review, which is the most sensible kind of direction. But the courts have a tendency to side with the system, and we had to create a case first is the idea. So what we agreed to do in the first place was to send the ICB a legal letter. So not a letter before action, but a legal letter nonetheless that sets out all of the ways in which the ICB has been acting unlawfully and basically telling it to stop the pilot and to.

Reengage with the community to try and actually come up with a solution that might work, you know, going forward because, obviously, this can't. This doesn't work on any level. And we we sent that legal letter two weeks ago today because it is due the ICB is due to respond to us by the end of the day today. So I don't know what they're going to say. I have an idea, and I don't think it's the answer that we initially wanted. So the fight continues. But we'll regroup with the legal team and see what's next on the agenda for that. But, realistically, it it is not gonna be an easy.

It's not gonna be an easy next step, and we are likely to have to crowdfund more, which we don't you know, it's it's awful when you're in a cost of living crisis and everybody's up against it, and it's the last thing we want to do is to ask somebody. You know? It's not it's not ideal at all, but we are so worried that York and North Yorkshire are being used as a test case in this country. And if they get away with it, other ICBs will follow suit, and we do not want that. We don't want it to spread. It's like a virus. We're trying to contain it. And the more help we get to contain it now and here, the less likely it is to spread to other areas and affect even more people. So that's kind of where we are at the moment.

And we really hope that, you know, we can make some change happen here because it's it's unacceptable. You know, it's it's not acceptable not to assess people. And the kind of reliance on the mental health care system to be functioning as well is is really problematic. Our local NHS is Taina Square Valley, Tube NHS, and they have a CQC investigation ongoing because of their mental health care. Like, it's it's there's so many crises everywhere, and we're just one more in kind of a big vat of nonsense, which can be really you know, it feels like you can't settle. There's always something that that's going on. But, like, from a, you know, individual point of view, we get emails daily.

From people who do not know whether they're on a waiting list or not, who do not know what the next step is for them, whose GPs won't talk to them. You know, one of the people said that they didn't even see a GP. They rang up their GP, and the the receptionist said, what do you want? And they said an ADHD assessment, and they were given a link to an online survey instead of any personal care any any direct individualized care. This is a nonsense, and it cannot spread. That's that's our bottom line, and we are still very.

I think what you're doing and have done and like, it's amazing. I think it's extremely impressive work. The website for everyone is ydrf.org.uk. Contributor to the Crowdfunder. Like, it is a big deal. It's important. And it's important to people there, and it's important to stop it happening and stop the contagion. But it is just wrong. It's very clearly wrong on moral grounds, on ethical grounds, legal grounds. It's wrong. There's an ethical test, actually, when you're evaluating something which isn't clear. It's like there there are three parts to it. Is is it lawful?

And there is a note, like, sometimes you don't follow the law, like, in the example that's always given this, you know, in Nazi Germany. But is it law is it lawful? Are we following the law? In that case, obviously, believe not. Yeah. How would you feel about it being on the front page of a newspaper? And, of course, you've done a good job. Okay. You're in the BBC last week, and we were trying to supposing that. And you got it talked about, which was brilliant. And then the third ethical test is how does it make you feel? Do you feel like you're doing the right thing or not right? And.

Generally speaking, if it fails one of those, you shouldn't do it. This fails all three. Yeah. And what's really funny is they had an ethics panel. We have it as part of one of the freedom of information requests, what they said. It was really interesting. I mean, you people who deal with ADHD in The UK are going to be very aware of a panorama that went out earlier in the year. But that was mentioned as a reason to disbelieve neurodivergent people in our city and in our county. It it was used in that space of an ethics panel to say, well, you know, basically, you can just buy one from a private provider anyway, and why can't we just move on from this? But they don't they didn't take into account any any ethics as far as I can see.

Yeah. But they they they they do have a private provider. It's I think I think you told me it's a charity like, but it isn't. It's like it's a it's an outsourced provider. We obviously feel very strongly. Like, the idea that private providers are inherently bad. They're usually the same people.

It's you know, people work half time for the NHS, time for a private provider.

Yeah. Which isn't to say that they're all bad apples because they're all bad And apples. But we are actually it's very we are talking about this in the conference. And so about Panorama, we've got one of the organizations who were involved talking about what it was like to be inside the storm. So yeah, do tune in for that. That's wonderful segue. We've got to call it time. Okay. The what you're doing is fantastic. Thank you. Like, obviously, you've got us It's been chakra. Yeah. I hear you. I like it. Yeah, where where we can help, obviously, let us know. Part of this is we're helping you. We want people to know. We want more people to know. You've been absolutely incredible. Keep up what you're doing. You're fantastic. Thank you so much.

Thank you.