How broken is the healthcare system? | Dr Lucy Pocock

EPISODE TRANSCRIPT

Mark

Hello, and welcome to episode fifty of Neuroshambles. Sweet crikey, who'd have thought that I'd have made it to half a century of episodes when I first hatched the idea about two and a half years ago? It's been an absolute pleasure to be able to pick you guys up along the way and share stories from my frankly bewildering household. I genuinely appreciate every single one of you magnificent people To celebrate the big five, oh, it's only fitting that my guest is a long-time Neuroshambles listener as we discuss an intriguing topic of the week, as well as neurodiversity champions, tiny epic wins, and, of course, some what the flip moments. So let us dispense with the preamble and get cracking.

SECTION INTRO

Meet the guest.

Mark

So next week's guest is a longtime listener of Neuroshambles, who wrote Invite Email to suggest a topic of the week. As well as being a parent of a neurodivergent child, she's also a registered GP, so she has a very interesting perspective that I'm really keen to hear more of. I am delighted to be able to welcome to the podcast. It's Lucy Pocock. How are you doing, Lucy? Hi, I'm very well. Thanks. Thanks for having me. Oh, more than welcome. So as I do with all of my guests, I want to find out a little bit more about your setup there. So what neurodivergencies are at play in your household?

Lucy

Well, I think we have two parents who are in denial about being neurotypical because we probably can't both be, can we? We have a son who is ten. And he is collecting the full set of diagnoses.

Mark

Like a Panini sticker album.

Lucy

Exactly that, yeah, it is full. So He's autistic with a PDA profile. Diagnosed autistic. Yes, diagnosed autistic. Obviously, not diagnosed PDA because that's rare and teeth, isn't it?

Mark

It's sort of put as a little footnote.

Lucy

Demand avoidant profile.

Mark

Yeah, they did that with India as well.

Lucy

PDA as fuck, I think is the technical term for it and also ADHD, dyslexic. Dyscalculic.

Mark

Okay, so yes, he's really doing well with the collection at the moment.

Lucy

So I think, you know, between me and my husband, we can't possibly be neurotypical both of us, can we? But fine.

Mark

Well, yeah, thanks for introducing me to your setup. There's a lot to cover in this one, so let's get started.

SECTION INTRO

What's the topic of the week?

Mark

So, the topic of the week this week is about the healthcare system in the UK. So, it's one that many Neuroshamblers have experienced in one way or another. Now I will caveat this by saying that we're only going to be covering the healthcare system in the United Kingdom, as that's the only one that me and my guests have any lived experience of. So apologies to any of the nineteen point one percent of listeners that don't come from either England, Scotland, Wales or Northern Ireland. But although it doesn't directly impact you, I am hoping it'll give you an interesting glimpse into the current state of play in the UK's national health service. Service, and there's probably going to be some things that resonate with you wherever you are. I think we should start by saying that there are a couple of different pathways to referring your child for an autism or ADHD diagnosis. A couple of main ones, there are some others. But one route is via your child's school. So that's where a teacher and a CENCO, which if you don't know, is a special educational needs coordinator. might observe behavior in your child that is consistent with neurodivergent traits, and then they might discuss it with the parents, put together some evidence and make a referral to the local NHS Neurodevelopmental Service. At that point, your child is fed into the system and they're gonna progress very slowly, usually, through the many different cogs of the rickety diagnosis machine. Which can be anything from twelve months to five years. So, for the sake of transparency, all three of my kids were referred via that route. The other main route is where parents or carers self-refer their child to a GP, which is obviously where Lucy comes in, because as a GP, she's kind of seen from that side of things. as I don't really know about that process, I was wondering if you could talk me through it and let other neuroshamblers who haven't been through this pathway know how that works.

Lucy

I guess the first thing to say is that often it's not the best place to start. So the GP unless the GP knows your child really well, which is unusual, to be honest, for us to know kids very well because they often only come to us when they've got coughs and colds and things like that. So unless you know a GP very well, actually we can be very little use to this process because we don't have the evidence that's needed to write a referral. So you'll often if you do end up going to see your GP, you would probably be signposted back to schools.

Mark

Because really in most areas they see them in their everyday life and they disclose them and they also know what to expect. Because, you know, as a parent of a child, you don't know if Because this behaviour is typical of children.

Lucy

No. And especially, you know, in our case, we've only got one child. So if you've got no bi no other kids to compare them to as well, that can be tricky. So I would say don't start with the GP. So have a chat with school, have a chat with Zenco and the teacher. If you're not getting any joy that way, you can come and see the GP. But we are going to ask we're going to need evidence from school because all of the assessments diagnosis requires that you show difficulties in two different environments. same home and school. So we wouldn't be able to make a referral without evidence from school probably anyway.

Mark

Yeah, I guess that's pa where people do come to you sometimes is when they go to the school and the school don't see enough evidence or they uh just Don't just don't really believe you, then they will go to you, and then they're in that situation where you're like, Well, you're gonna need to find evidence from a school. How do you navigate that? How do they navigate that?

Lucy

And I think, you know, keeping diaries and things was often difficulties at school. I know this now and I didn't know this before my son was diagnosed and presented with problems. difficulties in school don't always present at school, do they? Difficulties in school often present at the end of the school day at home. Which is where masking comes in. Exactly. My son was a huge masker. We had no idea really. until very, you know, really until he was in like year three that there was an issue at school. And school also didn't think there was a problem. They definitely wouldn't have supported us with a with a diagnosis. So I think it is really tricky. But so I think keeping diaries yourself at home, you know, Collecting evidence yourself is really important.

Mark

Tam and I did a huge amount of that and it was incredibly valuable because it well, firstly, just to kind of build up an image of their individual profiles because they have some issues with With some things and don't have other issues with other things. So it's useful to sort of build that up. And also, the more logs that you build up and the more evidence you have, the more you can sort of present specific evidence for. Different authorities, because it's not just the GP that's going to need it. It's, you know, it's the LA, it is, you know, all the other authorities that can be. Like the DLA or whatever else you want to be with it, for sure. It's definitely worth doing. And it is, you know, as I've said. on Neuroshambles before. It's quite heartbreaking to be logging all of that information because you're capturing your child at their the most vulnerable.

Lucy

This whole process is about deficiency, isn't it?

Mark

It's none of it.

Lucy

Strengths, unfortunately.

Mark

But we're trying to get them the help they need. And so if they did log that information and the school wasn't able to sort of corroborate that would that be enough evidence for you to be able to refer?

Lucy

I mean, I think most of us would refer with that information. Whether or not the referral was accepted at the other end is another

Mark

Right. Okay. So so when when we talk about a referral, you have the initial kind of contact with them if they haven't gone the school route and you would make your own assessment of that. You would you know look at logs or d you know kind of anecdotal evidence. And presumably to either tell them to get more evidence from the school, or if they can't do that, then just sort of cross your fingers and hope that what you've put together is enough. That then gets passed on where?

Lucy

So wherever the service is. So we know we would send that to and that unfortunately, that is different. That looks different in different areas of the country. So where I live, community pediatrics diagnose ADHD and CAMHS diagnose autism, or is it the other way round? I can't even remember. It might be the other way round. But it is it's not a single pathway. So we decide where that referral was going, and we would submit that referral. And at the other end Somebody is triaging those referrals. If some professional at the other end is looking, and sometimes they get banks back. So sometimes

Mark

Okay, so if it gets rejected, that comes back to you. You then know that that referral hasn't been accepted. Is it on you to then tell the parents?

Lucy

So, usually, good practice would be that the service would write to the parent as well as me.

Mark

As we know, good practice is not always the way that things work, is it?

Lucy

No. And then it's between us and the parents to try and figure out can we get some more evidence? It might be that we haven't put a convincing case. So is there evidence that we didn't include, that we could include?

Mark

Right. Okay. So because at this point, I'm guessing as a parent of a neurodivergent child, you you are very well read on neurodiversity, so you know what you're looking for. At this point, you'll probably you probably get a very good sense of whether this child is neurodivergent or not.

Lucy

I can spot them a flipping violence now. It's just a gift that we have, right? Once you see it, you can't fancy it. And, you know, parents. I was thinking you could just do a little sweep of the waiting room, just walk around and go, you, you, you.

Mark

Exactly. No further assessment required. So obviously you're then like, right, well, you know. you're trying to help the parents get this through, because diagnosis is important to them, I think, just to know what's going on. You might actually be quite personally invested in that and fighting for them just because you know from the other side of having to do it yourself. That it's really hard.

Lucy

My practice has radically changed in the last few years, has it?

Mark

Since your own son's diagnosis?

Lucy

Yeah. So GPs get very little training on slash no training on divergence. So in my I was at medical school twenty years ago nothing, not a sing you know, I don't remember a single session on neurodivergence. And I doubt that's changed hugely now, even for the current students going through medical school So I think, you know, we're not trained to spot it and we are very sort of old fashioned views about what an autistic person looks like. Yeah, of course. They're sort of a choice company. Which is, you know worrying, isn't it, really, for a GP that that is the case, but that was the case. And that is the case for many, many of my colleagues, unfortunately.

Mark

Right, okay.

Lucy

So I'm now a huge advocate, I hope. I tried to be an advocate because I was very lucky that at our GP surgery, when my son crashed out of school With Burnight, her daughter had experienced the same thing. And I just lucked out that I spoke to her one day And she said, Look, my daughter went through burnout. This is what it looked like. And she wrote letters to the school for me. She signed me off. I was off work for months You know, it she did all of those things for us because she had been through it and now I'm I that she paid that forward because now I'm yeah, which is wonderful and that's that but that's the thing, isn't it?

Mark

Is that that that your meeting with the GP at that stage is so important. And the outcome is so dependent on how much they know about neurodiversity. So it feels like the luck of the draw, right? It's just the luck of the draw of who you get because you don't get to say which GP in a surgery you get. You just get assigned one, right? And if someone gets you as their GP, they've hit the jackpot. Fantastic, as you did with the person that helped you with your process.

Lucy

On this topic, but you could come and see me about something else and get the shit under the stick, couldn't you? Because that's the problem is we have to know something about everything.

Mark

Yeah, yeah, yeah. And I'm doing it. you know, and I just think how many Neuroshamblers have had the experience where they've been faced with someone who doesn't know what they're talking about. About and doesn't understand neurodiversity, so hasn't sort of hasn't given them the best advice or hasn't Validated their concerns. Totally.

Lucy

I'm sure almost everybody has been in that situation. Sadly, there probably aren't that many of us who, you know, yeah. The surprising thing about it is, I think a huge proportion of the medical workforce are neurodivergent themselves. Okay. But possibly not acknowledged, let alone diagnosed.

Mark

And that probably doesn't help either. That's interesting. So so then they don't recognize it as being atypical because it's like, well, everyone's normal round here. That's interesting. I've not thought about that. I've really not thought about that. I've literally just come up with an idea, but I don't I'm sure it's been considered. But shouldn't there be some sort of doesn't have to be a physical badge, but some sort of recognition that a GP specializes in neurodiversity. So, if you have concerns around neurodivergency, you go to that specialist so they can tell rather than just the dude who's really good at elbows or whatever that is. Is that a thing that's being a thing for sure?

Lucy

And I think it should be. I agree. So that would, I think, would call it a neurodiversity champion, maybe. Yeah, I like it. In the practice. maybe each practice should have somebody who has done extra training. And often GPs do specialize you know, you can be a GP with a special interest in dermatology, women's health, whatever. So why not have GPs with a specialist interest in Neurodivergence?

Mark

Would people get triaged to that then if you've got someone who's I mean with the with those other specialisms are people sort of triage to like oh you're gonna need the ankle specialist or whatever it is Within a GP. Why is that not a thing then?

Lucy

Why is that not a thing? Good question. I can just come up with the answer. Wicked. Yes. We've sorted it out. We can finish this podcast.

Mark

My work is done.

Lucy

Yeah, let's. Let's think about how we'd operationalize that. I guess it's difficult, isn't it? We all I don't see why that couldn't happen. It would probably you know, it's going to require incentives. So one of the things that I was going to talk to you about, just the listeners to know, I'm not sure how many people understand how general practice actually works. No, please, yeah, enlighten us. GP practices sit outside of the NHS. So the partners in a GP practice are business owners. They're small business owners. Okay. Have a contract from the NHS to provide NHS services all GPs. Almost all, yeah. That's the model in this country. Yeah. So I work for a GP Surgery. I'm not a partner, but I'm employed by the partners. So I'm not an NHS employee. I'm an employee of that business. the business receives a certain amount of money per head of number of patients they've got in the practice registered with them. It's a pittance an absolute pittance, so it's about one hundred and thirty six pounds per patient per year. Right. Okay. Just think and they have to provide all health care services to patients for that. Now obviously, some people never go to their GPs. They'll go all year and not use any of that service at all. And our other patients are in there every week. Yeah, of course. Your favourites. If we think, yeah, and if you go to, you know, when I take my dog or cat to the vet, you know, I mean, a hundred and thirty six pounds doesn't go very far, does it?

Mark

You wouldn't even get in the door at my vet's place for that.

Lucy

Yeah. So actually we're get we're expected to provide a huge amount of service for very little cash. Yes, of course. And we we do get incentivized to deliver certain services. with extra cash on top of that contract.

Mark

What sort of services would you be incentivized for?

Lucy

So in this sort of topic area, the one important one is ADHD shared care.

Mark

I was going to talk about shared care because that is yeah, that's

Lucy

really interesting problem yeah so in general the gp contract does not contract us to provide care ongoing prescribing and monitoring for children and adults who are receiving medication for ADHD. So we have to be paid extra in order to be do that, in order to provide that service.

Mark

Because obviously when particularly with ADHD medication, the titration process takes ages. I mean Otto is two years in, still no nearer. It's been a nightmare. And we're going via CAMHS. And Tam actually went right to Tuesday and then was shared care with the GP.

Lucy

But lots of GP surgeries won't do that shared care because they're not funded for it. And it requires physical health checks. You have to check your blood pressure, you have to be weighed. And so that requires a nurse appointment. So that's something that has to be fund you know, all of this has to be resourced by the GP practice. And it requires us as GPs, you know, I've got no specific training in prescribing for ADHD, so I wouldn't be able to titrate an ADHD. ADHD medicine, that's not in my skill set. Right, okay. So, which is why it goes to camps because they are specifically because that was one of my questions was going to be about, you know, why

Mark

can Tam be under the GP for shared care for the titration and medication, but all of our kids have to go to CAMHS and CAMHS is almost like torture. The amount of Effort and the amount of inefficiency and the amount of sort of hoops we have to jump through. You know, like I'm the current the current titration process with Otto is that we now have to take him back every single week. Couldn't that be with the GP? And you've just sort of explained that. It could if they were being incentivized to do that, but they're not being incentivized to do that.

Lucy

They have to be paid to do it, basically. By who? Who paid to employ this? So it would be the integrated commissioning board. So there are around the country, we all live in an area covered by an integrated commissioning board and they decide what money is going to be spent on healthcare services in that area. So they have they've got obviously a finite pot of a smaller and smaller pot of money, and they have to divvy that up and decide what they're going to spend money on. And sometimes they will instead you know, if there's if the services are struggling, like if camps are struggling to see people weekly, or they will put the money into primary care and say we're offering this they call it a local enhanced service or a lend we're offering this service and GP surgeries can opt in or out of that. So one GP surgery might say, yeah, we'll do that and we'll take on the shared care. Another GP surgery might say no.

Mark

So it's so that's interesting is that that You know, regionally there will be these boards that decide where that pot of money goes because uh the long and short of all of this is money, right? it's about funding and a lack of funding. So everyone's just trying to eke out whatever they can with what little money they have and that pot is getting smaller and smaller. So I know that that, you know, really we have to look outside of the fact that yes, we know that budgets are Issue, but I'm interested in how that money is divided. And I didn't know about the boards that basically go in this region. We've decided that CAMHS is overloaded. I cannot imagine there are any regions where CAMHS is not overloaded. Right. If you don't know what CAMHS is, just for the listeners, it's child and adolescent mental health services, where I think from the age of 11, is it? We'll then look after the kind of mental health care. of children. And pretty much all ADHD referrals are involve CAMHS to some degree. And it's It's increasingly overloaded, and experiences of chems is universally shit, I think. Like, I mean, a lot of really good people trying really hard, but it's not fit for purpose, I think.

Lucy

At all. And in fact, in my how long have you been a GP? In my 16 years as a GP, I've had one CAMHS referral accepted.

Mark

One?

Lucy

Really? How do you think that's a good idea? Yeah, because they never meet threshold. So this is for like mental health support.

Mark

Right. So the CAMHS. So you do it directly to CAMHS and they look at it and go, no. And I'm guessing it's not and maybe this is a presumption, but it's not on they're not assessing on need, they're ex assessing on capacity.

Lucy

Yes. So they I think they have weekly meetings where they all sit round in a group going through all the referrals they've had. And they you know again, they've got a finite resource that they're having to use. And they therefore the threshold to be seen just gets higher and higher and higher to the point where you are actually actively trying to kill yourself is the only people that get seen.

Mark

Yes, I've I've heard that uh before as well is that you know they're not saying if they reject it, they're not saying that this person does not have needs. They're saying that there are people with higher needs and they've only got a certain amount of budget and they have to be prioritized. Which is deeply, deeply saddening and infuriating. I ga I can completely understand it from CAMHS' perspective, but again, it's all down to money. I should ring a bell every time it all comes down Of money at this point. Yeah, I mean, nobody was hearing what we were saying. Exactly. Okay, so you refer someone, and then they say, I don't see enough evidence here, and they bring it back to you. As a GP yourself and as a parent of neurodivergent children yourself, do you ever or can you, is it ethical to go look? I know that they've rejected it, but you're not wrong. Your child is neurodivergent. Do you ever kind of on the sly just take to one side and go, you're not going crazy? Because that, I think, would be so important to some people.

Lucy

Yeah, totally. I suggest it to some people without them coming to people with neurodivergence. I say, have you considered and I say this to adults too, have you considered that you might be neurodivergent or that you your child might be neurodivergent. And sometimes they say, you know, thank God you've said it. Yeah, don't be worried about it. And sometimes it's left field. And, you know, that's a different conversation. to have then. But I would definitely say, look, I totally see where you're coming from. I agree. I think this probably is ADHD, but I'm not qualified to make that diagnosis.

Mark

Ironically, because you are probably more qualified than anyone having been through it and done all the reading through it.

Lucy

But it has to be a multidisciplinary team assessment. So one person on their own could never diagnose it.

Mark

Yes, which is, you know, which is a good thing. I'm not saying it's a bad thing. It's definitely good to get kind of a consensus on it. Obviously, it slows things down, which is slightly more frustrating, but it it's necessary. So I've kind of talked about people coming into your surgery and your experiences of them referring them. But I'm just interested personally for you which route you went down. You didn't go by the GP route, you went by the school route. Is that right?

Lucy

Well, no, so it's we had a tricky. So, my son fell off a cliff. Like I said, we not really had any clue that he was neurodivergent. What sort of age was that? So he was in year three when he started having significant issues. So I think he was eight, sort of seven, eight. And he started not wanting to go to school. And he'd been reasonably happy going to school up until that point. You would have definitely described him as a like emotionally sensitive high needs boy, you know, until that point. but he was getting on fine, never in trouble at school, was was behind with we knew that he had reading and writing issues. But then he just fell off a cliff and stopped wanting to go to school altogether and was saying things to me like want to be here anymore and I hate school and so I guess it's really hard for an eight-year eight-year-old you know yeah and I knew you know I'm lucky that because I hear lots of people say that to me in my job that I think what he was saying not that I don't want to be here any more, but I'm finding things really hard.

Mark

Oh yes, I don't want this. Whatever this is, just make this stop. Not necessarily, you know, the ultimate end point of that, but just I don't want this to be like this anymore.

Lucy

No. But we work you know, both me and my husband were working full time. So I'm a you know, I work full time as a GP. My husband is a children's nurse, a lecturer in children's nursing. He works full time at university. we're trying to get to work. So we're just shoving him into school, you know, distressed sometimes. You know, I don't feel good about that now, but I'm sure lots of listeners will empathize. Yeah, no, absolutely. I do. Certainly. But looking back on it now, I realize that he was being traumatized by the school environment that he was in. I'm very lucky what happens when you're in the medical profession is that you have lots of friends who are also in health professions are similarly as well. So you can talk to those people. And I'm really lucky that I have a friend who works at Cats in Ireland and she'd spent quite a lot of time with us because we'd been over to Dublin to visit her a few months before, and she'd had time to actually observe my son in the wild. Right, okay. And she said She sent me a link and said, Have you ever heard of PDA? Oh, wow. Okay. Send me the link to some and I'd never heard of PDA.

Mark

Um, and uh I read it and went, Oh It's fright it's crazy, isn't it, when you read that look I that was with Jay, I'd sort of read up on PDA with Jay and it was just like Finally, this is the description of my child.

Lucy

My son's really sociable and is really, you know, uses those ways of getting around doing stuff or saying no very politely and make somebody laugh or look over here, you know, really distract people. So you he then stopped being able to do anything at all that summer, so we couldn't go anywhere nice, do anything fun 'cause he literally couldn't leave the house. And I think my friend and also the GP sort of mentioning the idea of burnout, 'cause again, I hadn't really you know, I didn't know what that was or what that looked like. So really sort of identifying what he was going through as burnout. And then school was so unhelpful, just gaslighting us. Really? They got some mental health advice for us. Which was that we should make home less motivating.

Mark

Oh, God. That school told you that.

Lucy

Yeah, that came from the mental health team, apparently. And I I was in a meeting with them and they were saying, This is what you should do. So during the day. no screens, no games, only books and chores. And then he'll want to go to school. And I said, I'm going to stop you there, because we're not going to be doing Any of that, yeah, nice, yeah, because it is like they were shocked. You know, what, you're not going to follow the professional's advice, absolutely not.

Mark

If the professional's advice is ill-informed, then fuck no. is my answer.

Lucy

Because as a GP, if I signed you off work, I would say to you, if I signed you off work for mental health reasons, I would be saying Do some nice things for yourself. Yeah, okay. That's a really interesting perspective. Yeah. Have rest, relax, have lunch with a friend, go for a nice walk. Yeah. You know, reduce your anxiety, don't you? Yes.

Mark

Bloody chores.

Lucy

Yeah. So, you know, absolute bullshit. So basically, we arranged to go privately because I knew it would take forever. And I needed to know. what was going on with him. Yes, yes. And I'm aware that it's a huge privilege that we were able to pay to go privately. And we paid to have a combined assessment. So an ADHD analysis assessment. Because we suspected that there were both things going on, and they you know, and that was great. And but he, you know, because of the demand avoidance and he was in burnout at the time, he wasn't really able to participate much in that assessment. he was hard you know, he he did go with us to the first assessment, but he only managed half an hour there really.

Mark

Okay. That is the third the third route that we I did I said there were two routes at the start. You mentioned the private route, which is one that we went down with uh Otto in particular, again, because he was sort of Really unraveling. We were just desperate. Yeah, yeah. So you get the diagnosis through. So as a GP, you've sidestepped the system. You tried it. And you were like, no, this is, I need, I need to. turbocharge things a little bit. So then you go the private route. But you then, I presume, have to then get back into the system some way. Did you sort of then need CAMHS to accept the diagnosis to be picked up there?

Lucy

So he isn't on medication actually. Right, okay. So we initially, the psychiatrist that diagnosed him said, well, look, he's not at school now, so he doesn't need medication. which I I don't think is a correct thing actually. I don't think actually there are medications, not just about being able to attend school, but anyway we sort of accepted that he didn't need ADHD meds at that point. So we didn't pursue that until a bit later.

Mark

So you didn't need to go to the the CAMHS route?

Lucy

No, but I more recently, we went back to the same private service and said, look, I think he is struggling with lots of ADHD stuff, and I wonder if meds would help him. But unfortunately, he doesn't want to take the meds. He he can't see how they will help him. So he he's not motivated to take them at the moment. So yeah, we haven't really had to go down that route yet.

Mark

So the private diagnosis was received and that was fine. And you haven't really had to navigate the GP in the same way. You haven't had to navigate CAMHS in the same way. I think that private diagnosis is just what you need it to be at that time.

Lucy

Yeah, and actually it also helped us. So we wanted to access the hospital education service.

Mark

Right, okay.

Lucy

Which is the service in our area, which provides education support to kids who can't go to school for medical reasons.

Mark

Right. Okay. And you could do that with the diagnosis. Wh

Lucy

Yeah. So in most cases. So I imagine this is again, it would be different. In each area, but in our area, that referral for the hospital education service has to come from a specialist, so it can't come from The GP.

Mark

Right.

Lucy

And the child is meant to be under that team for ongoing care. So CAMS can refer if if the child is under CAMHS. And we were lucky enough, because I didn't even really know about that service, but the psychiatrist who assessed my son also worked in the CAMHS service, so knew And that's what you'll also you'll often find if you use a private service. The clinicians do it give running the private service are often also working In the NHS as well, so they understand the pathways.

Mark

Right, okay.

Lucy

So she contacted the Hospital Education Service and said, Would you accept a referral from me privately? And they said yes. So that helped us to access. Hospital education service, okay, which meant a tutor coming to our house that he never engaged with.

Mark

Um, obviously, the amount of times we fight for the support for our kids, and they're like, nah. Not for me. Medication, nah, tutors, nah, not for me.

Lucy

But actually it provided lots of evidence for us to show that if he won't engage with a tutor in our house How the hell are we going to get him to any kind of school? Yes, of course. But do I think it was really good for evidence collecting?

Mark

So, one of the things we touched on earlier was training and the fact that medical students are not trained in Eurodiversity. Certainly, weren't back in the day, but probably aren't now, from your understanding of it. And you mentioned when we sort of spoke previously before this, about the Oliver McGowan training that is now available to GPs. Tell me more. I didn't know this was a thing. So, is this available to all GPs?

Lucy

Yeah. So, can I give a trigger warning though before I do this? Yeah, please do. Please do. So, just as a trigger warning, this bulbs. Some difficult, sensitive discussion about a young man's death. So definitely. Just to sort of flag that up. people might want to just mute for a short while. So Oliver McGowan was a young autistic man who lived at Bristol, which is where And Oliver, as well as autism, Oliver also had epilepsy. And in 2016, he was admitted to hospital because he was having seizures. And because the medical staff didn't listen to his parents, he was administered medication he had previously reacted very badly to, and Oliver died he was eighteen. So it was tragic, you know, and the coroner basically, you know, said it was it was an avoidable death. Emblematic of the systemic failures in healthcare communication and consent and understanding and all Autism and learning disabilities. And then his mum, Paula McGowan, who is now Paula McGowan OBE, just took this on like a hero, despite her grief. really fought tirelessly, taking this to her MP, and then that was taken to Parliament. And it's now been included in the twenty twenty two Health and Care Act. that all CQP registered providers, so that's all hospitals and LGP surgeries, must ensure their staff receive learning, disability and autism training appropriate to their role. Right, okay. And through that, this training, which is actually named after all of us, it's the Oliver McGowan training, has been developed. And that is now the recommended Training, so it's mandatory training. Okay, brilliant. All NHS star. So there are two tiers to it. The first tier is like for for people who have non-clinical roles, say reception staff, and they have to have it as well. They have to do this an online training package. And then clinical staff who have direct face to face contact with patients have to do Tier One and Tier two, which is a whole day of face to face Education that has to be co-delivered with people with lived experience.

Mark

So it's that sounds wonderful.

Lucy

Yeah, it's really good.

Mark

And so you've been on that training yourself, obviously.

Lucy

Yeah.

Mark

And you know, be honest, how how good is it?

Lucy

Well, I thought it was really good. I will say there are mixed mixed reports of it. And I think this is the problem that you will always get people who they're not interested in this topic, they don't see how it's relevant to them. And that is, They're part of the problem, aren't they?

Mark

I mean, do you get medical people like that though? Yeah, you can't really. What people are like, I'm not interested in this because I'm a knee guy. Or I know everything about this. Yeah, no, absolutely.

Lucy

How is this relevant to me? I'm an orthopedic surgeon. But you do.

Mark

Yeah, you're going to be operating on autistic people, dude.

Lucy

Yeah, yeah. So, I mean, I think you have to realize that. doctors are a microcosm of the general population in that you you have that wide variation of of abuse.

Mark

Yes. But too I mean, I think a characteristic of all people in the medical profession is an ab a a desire to help people and you know, in a caring nature. However, you are also gonna get people who are Know-alls and wrong 'uns And a very, very small minority. Yeah, yeah, they actually are. But that was one of the questions that I I was gonna put to you because With that caveat that they are essentially just a cross section of the populace to a greater or lesser degree, without wishing to ask you to throw any of your fellow practitioners under the bus. Are there people who are sceptical of neurodiversity as there are in the wider population? Because it is really frustrating sometimes when you hear people say neurodiversity is just a foreign Fad, it's just a trend. It's not, you know, it didn't exist when I was around when I was growing up. Do you encounter people that actually have those views and essentially the gatekeepers to the help that people need?

Lucy

So I don't I think it would be a minority of people who would say that neurodiversity wasn't a thing. But so I'm in lots of Facebook groups with other doctors. Right, okay. And so I see a whole range of views written, you know, and often what we write on social media might be different than what we would say in a face-to-face discussion. Yes. But I do see some there are lots of people who think overdiagnosis is a thing, for sure. Yep. And that often these are parenting problems presenting themselves. Particularly, and I will admit that I would have thought this myself as well: that idea that they're fine in school, but they're not when they get home. Well, obviously, the problem's at home. They need more discipline and all of this just for the record.

Mark

Bullshit.

Lucy

Bullshit. Absolutely. And I would say that as well is worse. I find in my own experience and my own views. You know what we're like before we have kids as well, that's even worse. Oh, yeah. So I was a GP before I had you know, before I had a child. So you know, it's like people giving you sleep advice, isn't it, for babies? Just put them down and leave them. I'm not sure I give that advice, obviously, no. But I think there are people with very limited experience Of the world who think overdiagnosis is a thing. Yes.

Mark

That is interesting, actually, because you'd never take parenting advice from anybody who doesn't have kids. That's you don't fucking know. You think you do? You think you know, you have no idea. And it's the same thing. Like, I wouldn't take parenting advice for neurodivergent kids from anyone who doesn't have a neurodivergent kid because you have no idea. You just don't get it. But that must be really frustrating. If you're going to your GP for help and they are the people that you're getting, that's they're the people that are able to kind of progress you to the help that you need.

Lucy

It's trauma is what it is as a parent, isn't it?

Mark

Yeah, it is trauma because it's gaslighting. Yes. And I know a lot of new ashamblers have had that. You know, some people send me emails about that kind of thing. And guests I spoke to recently had that just pure gaslighting.

Lucy

Yes. And that whole you know, at the worst end of that spectrum, I'm not going to get the term right. It's what we used to call Muncheisen's by proxy, but it's for fee.

Mark

Fee, yeah. Which our previous guests Danielle Jata-Hall was accused of.

Lucy

Yeah.

Mark

Fee is fabricated or induced illness, and it's not.

Lucy

Yeah, at the worst end of the spectrum, that's what that is, isn't it? Where you're saying

Mark

You've presented it. You're making it up. Yeah, yeah. And you're putting ideas into their heads.

Lucy

And yes, which is going to make a safeguarding referral.

Mark

about yeah yeah which is harrowing and as i say if you want to hear a little bit more about fee which is not not an easy listen when it you know um when you hear danielle yarta halls Experience of it, but that is in the medication episode of Neuroshambles. I can't remember the episode right now, but but look it up in season two. So yeah, you're conf you're greeted by someone like that. As a parent, because I'm sure that there are some listeners who have gone through that. What do you recommend they do if they're they take something to their GP? And the GP is just not clued up enough and is not listening. Is there anything they can do?

Lucy

So there are two things. So one is just cut your losses. If you realize partway through the consultation that it's not Working and this person isn't the right person for you. I would just get out of there and think about trying to get back in with somebody else. So most GP practices have multiple GPs.

Mark

Can you request someone else? Go, look, I want to talk to you.

Lucy

Can you actually say I want a second opinion?

Mark

Is that a thing?

Lucy

Definitely. Definitely. I'd love to say that to someone. Yeah. I'd like to talk to somebody else. You could ask so if you're in a Facebook you know, I'm in lots of Facebook groups with other parents of autistic kids and so on. If you're in one of those groups, why not put posts on there? Anybody got experience at this surgery? Is there a particular GP that says try and find out if there is a meeting somewhere and try and get to see them?

Mark

Can they request that then? If they phone up reception, okay, good.

Lucy

Yeah, you might have to wait. You know, that's the thing. If you want to, you're worth the wait, though. I try. The other thing you can do is you can make a complaint. You can complain to the practice manager. Yeah. And I would just be very specific about that, you know, if somebody was unprofessional or you weren't happy with the service that you got, then I would complain to the practice manager.

Mark

Yeah, because, you know. It needs to change, doesn't it? It's really important that we're not gaslit. People that in their time of need are not invalidated, and you know. And given the wrong advice. So, okay, f so conversely, then, if you've encountered fellow professionals like this, is there a complaints procedure internally that you could

Lucy

Yes, I think if I worked with somebody like that, I would flag that to my line manager, definitely. But it's very difficult, for instance, you know, if I'm in a Facebook group with people. And they've just got shitty views that they're posting on Facebook about what they do. There's very little.

Mark

They're anonymous, aren't they? Yeah, yeah.

Lucy

Sometimes they are, sometimes they're not.

Mark

But it must be exhausting when you're on those groups. And then you meet that, it's like, oh god, now I have to correct you.

Lucy

So I'm also in groups of like medic mum, With special needs kids, and I'm also in a I'm in a WhatsApp group of Dr. Mums with PDA kits niche. But we'll often say, Oh, God, look at the post on such and such group. Can anyone wade in and help me? And we'll then wade in onto the onto the comments.

Mark

I'll be tagging out of this one.

Lucy

It's you can tag someone else in quick.

Mark

Someone needs to correct it.

Lucy

Yeah, because actually if multiple of us can go in and then maybe it does shift people's views a bit, actually, if they realize they're outliers. In terms of their colleagues and their peers, maybe that, you know, if we can direct them to some reading or how I mean, it is worth pointing out that these

Mark

people are in the minority, I think.

Lucy

Most GPs and clinicians will do whatever they can within the The constraints of the system to help people. And sometimes, despite whatever you know I would want to do, all I can do is listen to people. and affirm what they're doing. So and I think that's powerful. I hope it's powerful. Sometimes all I can do is say, you're doing a brilliant job. This is really hard.

Mark

Oh, God, that would Yeah. That's that's all you need sometimes. Seriously. And like just, oh, thank Christ. I'm being seen. You know, I'm not going crazy. That's Oh, dude. Yeah, that would mean so much when you're at that moment of because you're going to the GP because you need help. You're not going just for a chat and a cup of tea. You're there because, like, I don't know what else to do.

Lucy

I share information about I'm not you know, not tons of details, but I share you know, I've got an autistic son too. I understand some of this. Yes. Which is so important. Because again, I find that helpful with my GP. When my GP said it to me, I find it really because you feel like it's not just me. And it's, I don't know, wrongly, I think some people put GPs on pedestals. So I think it can be really helpful to say, God, even my GP has got this problem.

Mark

Yeah, yeah, absolutely. Another question I had. Because and again, this is sort of similar to the prevalence of sceptics, people who don't believe or who believe that neurodiversity is being overdiagnosed. Is that you very often hear ill-informed people saying it's just a fad, as we said before, or loads of parents are just making it up, this is the one to abuse the system. They're just trying to take advantage of the system. And that is deeply frustrating when you hear that because it's wrong on so many levels. But I'm genuinely intrigued to know if there are any parents that are doing that, are seeking diagnosis for whatever reason. that is not valid to game the system. I don't know why you would do it, why you would put yourself through this fucking paperwork But is there any evidence of a single parent who's come to you with their child and going, I'm pretty sure that my kids are neurodivergent and they're doing it to game the system?

Lucy

Nobody. Zero. Nada. No way. I mean, it's just It's ludicrous, isn't it? Completely ludicrous. And um, I had this conversation with a friend of mine actually not that long ago where she said to me, um Yeah. Of course, there are people that are trying to gain the system, aren't there? And all those people who are really autistic, that means it's hard for them to get support because there are so many other people. And I I just thought I just don't know where to begin. Because as you just said, who would put themselves through the torture that we have to go through to get any support at all? These people are desperate, desperate parents, aren't they? These children are on the edge of society. They're falling off a cliff, you know, in education. it's ridiculous. I'm going to be controversial about diagnosis and say that I hope that one day in the future we won't need to put people through diagnosis. In my mind, and I'm aware that some people will not agree with this and that's okay, these labels are man made social constructs. And I say man-made, I mean man-made, because they're made by men largely, and we're pathologizing people for something that is actually completely natural, like there's nothing wrong. with people who are neurodivergent. Yes. It's not efficient. It's not a medical problem. Yes. And we're also squeezing people into boxes that often they don't fit it. So, you know, my son, the reason he's got so many labels is 'cause he doesn't fit neatly into one box.

Mark

Yes, yes, exactly. And also, you know, if you're autistic, what which facet of autistic?

Lucy

I think it's you know, I can understand labels can be helpful to get support and things like that. But in my mind, in a in a uto in a my utopian society of the future, we won't need to put those labels on people. We'll people will be supported to identify what their needs are and what things they need to help them. but we won't need to put people in boxes. What I'm absolutely not saying for the benefit of the doubt is I'm not saying that it doesn't exist, that people aren't different. Absolutely. Yeah, that's all our brains work differently.

Mark

Diagnosis, I think, is more for other people than it is for us. Because we already know, right? But by the time you kind of go for that help, pretty much, you already know that there is something different about your child. You might know not know what that is. And even when you do find out what that is, you're not going to suddenly have all the answers or have all the strategies. But it is useful to go, can you just back off a little bit? Because he's autistic, right? And should you be asked for the paperwork, you go, There, you see, you see, fucking four years it took me to get this, back off. But it is frustrating when you have people that think that that diagnosis suddenly opens up this trove of riches. That we can help ourselves to, and we can buy loads of shit, and we can access loads of support. Nobody wants to put themselves through this. No one. There is you don't get people with neurotypical kids who are sitting there constantly going, Why isn't my child like those children? Why does my child not respond in the same way? They don't have that doubt because their kids just fit in. There might be a few nobles and a few lumps, you know, into like from the main blueprint of what your child should be. But largely, they're not standing out. And that's why They're typical, right? They're neurotypical.

Lucy

But it's exactly the same as like the Black Lives Matter conversations, isn't it? It's that you know, it's it's having pr the privilege being in a privileged position of having neurotypical children means you have no understanding at all of what it's like. You know it's the it's the same as white privilege. Neurotypical privilege is a thing, isn't it? Yes. you can't possibly know what it's like on the other side. And it is frustrating. But I I feel like I've got hope. I do I am hopeful because I think the generations You know, after hours, they're much more open-minded about stuff. They're much more fluid about things like gender and you know, I think neurotype is another thing that they're going to be fluid about.

Mark

Yes, definitely. But what I think this sort of the nub of my question about that, right, about are there people just making shit up? Is that when you are a parent going through this process and going through this system, It feels to me that the very first point of contact with any professional is that you're not believed. Right. And you have to then provide a mountain of evidence, and you have to go through so many like so many hoops to prove that you're not making shit up. Right. And that would only really make sense to me if there was a load of people that are making shit up. So why is the first and this is not me having a go at you, by the way, I know this feels like I'm having a go at you on your profession. But why is the initial point of contact to not believe the parents. Where does that come from?

Lucy

I think it's worse now because the system is so stretched and so we are in a sort of rationing mindset. Yes. So I think that's part of the problem. Yes. I think the other part of the problem is that there ha we know that there are the number of people seeking diagnoses is increasing, and that isn't because people are making it up. Yes. it's because of a combination of factors like increased awareness. And I firmly believe and again, I don't want to throw individual teachers under the bus, but the education system as a whole is increasingly rigid and not a good place for neurodivergent children. Right. Okay. And that is causing these problems to come to a head. So things that you know, years ago when I was at school and the teacher could adapt their teaching and che teach whatever they wanted to teach. Um, you know, that suited to neurodivergent kids and they would probably manage without very much help. But nowadays, because everything is so rigid, because there's so many assessment There's so little playtime, all of those sorts of things. It's putting huge pressure on children in schools. And that's why we're seeing more of it, I think. Part one of the reasons.

Mark

That's interesting. And so you're saying that there is that that the scepticism that I'm perceiving might not be skepticism, but it's essentially a filter for how do I allocate my very sparse resources. Because there are people with greater need, and it's needs assessed. Who has the greatest need for my little tiny pot of gold?

Lucy

If you've been a GP for I've been a GP for fifteen, sixteen years, I've seen in that time an uptick in people coming to ask for referrals for diagnosis. Yes. If you were ill informed, you would be thinking what is what are the reasons behind that? Yes. Is it because people are making it up? Is it because it's now TikTok influencers encouraging everybody to go and get an ADHD diagnosis? You would start you may start to think along those lines rather than the other things that we've talked about.

Mark

Which is, oh, like people just being aware now that that that's what they've been doing. They've been masking for 40 odd years. Yes, and that that's actually what this is.

Lucy

Yeah, and then you start looking around at all your friends and colleagues and going, Oh, you're all new emergency. Yes, yeah, yeah, yeah, yeah.

Mark

I I put out a call for people to submit listener questions because I thought it was quite interesting because I I haven't been through the GP pathway. I went through The school pathway and the private pathway. So I was interested in it with whether people had questions that they wanted to ask you. So I'm just gonna I'm just gonna read them out if that's all right. And then if you feel able to answer them, please do. So I had a listener question from Hannah on Facebook, which was What support can GPs offer for families with neurodivergent children beyond asking for a referral for the ND diagnostic team, which we've obviously been through? I've not used them on our journey. I've tended to work with the pediatric team, occupational therapy team, with providing evidence for annual review meetings in school. If there are ways the GP can help, I'd love to know more. So what do what don't we know we can ask for, I guess?

Lucy

Yeah. I mean, we're often in a position of coordinating care So we receive all the reports in. We're often the ones that are holding it all together. Perhaps that might not be obvious sometimes. and you might need to give us a nudge occasionally. But we ensure that communication between services happens often. And sometimes we can chivvy referrals along. I mean, again, with diagnostic things, we probably can't because you know, the rental message they are what they are. And but if if it's for something like CAMHS for mental health support, for example, if things change whilst you're waiting to be seen and things become more urgent, we can sometimes write letters to expedite referrals.

Mark

Does that work then? You can say get a move on and they're like, oh, Jesus. Lucy's onto me.

Lucy

Well, sometimes, yeah, we can say, like, actually, things have changed. He's really deteriorating. Right. Concerned. Could you see them sooner? And that carries weight.

Mark

Okay. Well, that's good.

Lucy

Yeah. Yeah. Some GPs, and I would say that this is some, not all, will write letters of support for things like EHCPs, DLA, those sorts of things. Those letters fall outside of our NHS contract, so they're often seen as private work and you might have to pay for them. Right, okay. So again, back to how I described general practice sits outside the NHS and we're only contracted for certain things. So if you ask for letters which aren't NHS work, so writing a letter for DLA, for example, wouldn't be considered NHS work. Practices might charge you for right, it's the practice that's charging you.

Mark

They're not you as the GP sitting in the back of the club going, I'll sign your DLA form. Yeah, no, exactly.

Lucy

Yeah, the practice charges for it. that again, that's pretty variable. And some GPs just won't write those letters.

Mark

Okay.

Lucy

Why? They don't feel it's their job sometimes. So they'll often be statements of fact. Their mum tells me that X, Y and Z because often you know, again, I can't say li little Tommy can't tires, shoelaces or whatever, because I haven't assessed that. So I can't say so we're going to be limited to what we can say. we can signpost people so often we know about local services that you might not know about. So we can signpost to other places that you can get support. And I think one of the biggest things that I do as a GP, where I think I think our role can be limited sometimes, but I am providing support to parents and their mental health.

Mark

Yes, yes, yes.

Lucy

As we know, that this is a and one of the things about GPs is that we look after whole families, and that's what our model is based on. We often know everybody in the family. And so when we see an individual, we're not just thinking about that individual, we're thinking about their siblings and we're thinking about the effect on the family as a whole. And so I often if I see mum or dad might come to talk to me about a child and I might clock that they're really struggling themselves and say, look, why don't you book a an appointment with me to talk about your mentor?

Mark

That's exactly what Tam had. Was incredibly valuable to Tam when Yeah, I think the GP was just like, have you thought about yourself? As in look after yourself.

Lucy

And I think that that was that that wasn't.

Mark

Yeah, exactly. I think that was a nudge that Tam needed. So it's yeah, it's really valuable. Yeah, it's a really, really valuable service that you do.

Lucy

And the other thing to think about is lots of children with autism and also other learning disabilities. So if you have a diagnosis of a learning disability. then you're entitled to an annual health check with the GP. So we will also do those so they're physical health checks. So we know that children who have a learning disability or are autistic, their physical health is often worse because they find it difficult to access health care. And also might not know that something's wrong.

Mark

You know, interoception issues.

Lucy

Exactly. So we should be offering annual health checks to people with disabilities and autism. I hope that helps, Hannah. I it's not you know, yeah We're not magicians.

Mark

It's just useful to know. Okay, another listener question I had was from Rachel via Facebook. Which was this is a very specific example, but I think it speaks to a broader thing. Why can't GP sign a flex form for home school learning? We've had to wait two years for CAMHS to sign, leaving my 15-year-old without education for two years. which is obviously frustrating. And I am I imagine that you're not able to discuss specific cases or comment on behalf of GPs in different LAs, but it speaks to that thing we were talking about earlier, about CAMHS being the gateway to the support that we need, but it's so overwhelmed and underfunded that we're just kind of stuck in limbo like Rachel is. Is there a reason that GPs can't be used more for that sort of support?

Lucy

So I think a couple of reasons. So one is we don't have the training to make decisions about what education is appropriate for an individual child. And often, as I said, we often don't see those children very much.

Mark

So and I presume does it have to go to sort of more than one person? Again, it's not just a single person signing this off It'll need to go to a team.

Lucy

I don't know actually. And I imagine Flexi Home School Learning, really, this is an education decision. And I know this is really unhelpful because As parents, we often get stuck between education and health, who all seem like they're being really unhelpful. But the decision as to where a child receives education should be taken by education. It isn't really a healthcare decision at all.

Mark

But then CAMHS isn't education, is it?

Lucy

No. But again, I think this is similar to I said in our case when we were referred to the Hospital Education Service, a bit similar sort of idea to that, that the GP wasn't able to sign the four men and not because they weren't willing to. Just 'cause somebody has made a decision somewhere that it can't be a G P that signs it.

Mark

Right. So then if you if you bring it back to Rachel, who's trying desperately to get this out for her child.

Lucy

Yeah, I've got no great answer for Rachel and that's I mean, luckily, it sounds like hopefully I don't know whether that's been resolved or not, Rachel. I hope it has. I mean, in some respects Often we get asked, for instance, to write letters um for pupils being absent from school, for example. Yeah, okay. So like in my son's example when he was off with Burnout, um, without any HGP or anything initially. And in those circumstances, the Department of Education guidelines actually says that schools should be authorizing the absence of pupils. With mental health problems, regarding they don't need, you shouldn't need medical evidence.

Mark

Right, okay.

Lucy

So you don't need to ask, so you should be pushing back to school.

Mark

So you push back to school again and you sign it, guys. Yes.

Lucy

Well, you yeah, you should be able to authorize the absent. He's unwell.

Mark

But then that's where scepticism comes in, isn't it? Where they're like, I don't believe he's unwell.

Lucy

Again, why would you? have to take time off work yourself in order to look after your you know, I mean, it just doesn't make any sense, does it? So I I think a GP can write letters saying this child has presented with an symptoms of anxiety and they're not able to leave the house, then you know, they can write statements of fact letters like that, but that very few GPs would feel comfortable. Actually, signing a form to say this child needs this type of education.

Mark

So, for whoever's made that decision has decided that CAMHS is in the best place to sign that form, CAMHS is overloaded. Underfunded, ring the budget bell again. Ding, ding, ding.

Lucy

The other thing, just to say, is, you know, and people will be aware of this, I'm sure, that our appointments are like 10 to 12 minutes long. Is that all?

Mark

So you, I mean, and now, as you said. you could probably diagnose someone in that time. Like anecdotally, you go, yeah. However, that's not official and you need you need additional evidence. that side of things. But yes, it it's a very time limited your interactions with these people.

Lucy

So yeah. And the other thing is prescribing. So I know the other thing that lots of people ask about and get cross about is GPs that won't prescribe certain medications to children. So melatonin being a big one. So melatonin in my area where I work is restricted. So we have something called a formulary, so I can only prescribe drugs that are on the formulary for each drug has has got a colour, it's like a traffic light system. So green drugs I can prescribe freely in primary care.

Mark

Okay.

Lucy

Amber drugs have to be initiated by a specialist and then once they're stable on that drug GP can take over prescribing. Right. And red drugs are specialist prescription only. And in my area, melatonin is a red drug. Really? It can only be prescribed by a specialist.

Mark

What is the reason for that? Just anecdotally.

Lucy

I do not know because in America, you can go and buy it in a flipping health food shop, can't you?

Mark

I mean, I'm not getting into the specifics of why melatonin is designated a red drug. Um, meladonin is certainly something that autistic kids seem to have a deficiency in. Uh, and it definitely helps With the sleep patterns. So I know for many, many parents who literally rely on it just to stay sane when their kids can actually get to sleep at a reasonable hour, it's really important. But you can't just write that prescription because it's a red drug.

Lucy

Yeah. And and other drugs like antidepressants, for example. So often we have young people waiting a long time to see camps for antidepressants. I can't prescribe that. Really, I wouldn't prescribe that to somebody under eighteen, really.

Mark

Yes, okay. But because then they need to go through someone who has specific training in that side of things and presumably, you know, would be cross checked by a fellow professional as well to make sure that we're not just dishing out very strong medication for kids without a second opinion.

Lucy

Exactly. And some of it's like risk, you know, initiating so antidepressant initiation. in young people is associated very rarely, but is associated with suicide in young people. And so we would want them to be under the care of a specialist team when they were starting that medication. We might then take over the prescribing of that later on, but yes, and that was the thing, it's like when that happens with them

Mark

With shared care, for example, is that the kids will be titrated onto a specific medication and then with shared care you can then Refer back to the GP who says, Okay, I am happy to. And as you discussed earlier, you can then be funded. You can be incentivized to pick up that and then continue prescribing that medication because you know that they've been assessed.

Lucy

properly and you know exactly but yeah it's about who holds the risk really. So the the specialist still holds the risk for so often with shared care, the idea of shared care is that the specialist does annual monitoring still. So they should be having an annual review with a specialist, even though we're doing the ongoing monthly prescribers.

Mark

Yes, okay. Let's just quickly, very, very quickly touch on right to choose because this is something where the CAMHS waiting list So long again, it's back to CAMHS, that you can request a diagnosis via a private clinic, which would then come back. into the NHS once that's done. It's a process that I did with India, that Tam and I did with India. If you want to know more about that process, listen to the diagnosis episode that I recorded with Tam. I'll put a link in the show notes for that one. But that was back in season two. But my question really is that we had to specifically request it. We found out, I'm not quite even sure how we found out, but it wasn't offered to us. We had to specifically request it. And then the GP went, Oh, yeah, yeah, fine. We didn't know it existed until that. Is there a reason why parents aren't offered? It at the outset.

Lucy

So, I mean, I think that's a lack of awareness. Okay. I don't think anybody, I don't think there's like a conspiracy. No, I don't think so. So I think I always offer it. In fact, in my practice, if somebody inquires about ADHD referral, we have a text that you That we just send to people with all the right to choose providers on the links to say, just have a look through those, let's know which one you want to, yeah, basically.

Mark

I was interested in if there was some kind of financial reason for because obviously. you know, the NHS has to pay for that, and then you know, is there a reason that they don't have the budget, so therefore they'll only let it

Lucy

I imagine they're contracted, you know, they're block that's a block contract to that provider to provide assessments. I d I doubt it matters how many people We're referring to.

Mark

Okay. So if you're considering right to choose, just ask.

Lucy

And then the key things to ask for, though, the key things to look for is what that provider will offer. So often some of them will just do assessment.

Mark

Yes.

Lucy

But if you're going down the ADHD assessment route, what you really if you think you might want medication, you need to know will that provider offer initiation And titration of medication, and will they offer shared ongoing shared care with your GP? Because not all of them do offer all of those things. So then you might get stuck with just having a diagnosis and nowhere else to go.

Mark

Yes. And if you then end up doing titration and medication with that provider and they don't do shared care, you're then going to have to pay for all of that process from a private clinic, which is Not cheap, guys. So, yes, that is a really, really valid point. Thanks for that. One other question I had. And it really speaks to what the main crux of the topic of this episode is is the system broken? And the reason that I ask that is because people's experiences with their local healthcare system Them is so wildly different from everyone that I speak to. Some people say, Oh, yeah, I got my child diagnosed in nine months. And then some people are like, Yeah, dude, it's Been 14 years and still not diagnosed. I'm exaggerating, obviously, but it is very often you hear very often that it's a postcode lottery. And I looked to try and find some statistics on this because I d i it's it'll be useful to know, you know, an average weight in Kent is this, whereas in East Sussex Is this, and you can see the disparity. It's really, really difficult to find that evidence. I've only got anecdotal evidence, but I know that. People some in parts of the country have a much harder battle to get diagnosis and they have to wait for much longer than in other areas of the UK. So we're all part of the same NHS. Why is there such a disparity?

Lucy

Are we though? Oh, here we go. Here we go. Here we go. 'Cause you think that the NHS is a single entity, and it's not. Well, I mean, it sort of is and that the funding all comes from The Department for Health and Social Care. And that goes, remember earlier, I talked about integrated commissioning boards. So locally, our health care is funded and commissioned. via these ICBs, as they're called. Yes. So the ICB receives a pot of money from the Department of Health and Social Care. I guess that is something to do with how many people live in that area and what their needs are. So things like deprivation and stuff will probably play into that.

Mark

Probably age as well. I would imagine.

Lucy

Probably age, deprivation, yeah, those sorts of things. So they they get this pot of money and they have to make a decision what to do with it. And that's where the postcode lottery comes.

Mark

In rights.

Lucy

That's why we get wildly different service models from one region to the next.

Mark

How many ICBs are there?

Lucy

Oh, I don't know.

Mark

Just roughly, finger and air. Are we talking about like hundreds or are we talking about like four?

Lucy

No. Probably, um, twenty, I would say, okay. Right. So they sort of roughly conform to Sort of county-ish, yeah.

Mark

Okay, so they might team up, like might have one or two, but two counties in one country.

Lucy

Yeah, so my area at the moment is Bristol, North Somerset, and South Gloucestershire is one ICB.

Mark

So that's an ICB, they'll be given a pot of money. And then they will choose how to prioritize where that gets spent. And obviously, one part of that process is mental health.

Lucy

Yeah.

Mark

And would neurodiversity that would be encompassed by their mental health budget? Or is it a differently?

Lucy

It might be a separate budget. It might come under sort of pediatrics or again, there'll be an adult and children's service. It might be completely separate. It might be completely separately. But I mean, it certainly is going to be is it you know, is an important thing that the ICBs have been thinking a lot about. Yes. So in my local area a few years ago, our waiting time was about five years, I think. an autism. And they had this radical idea that they were just going to retriage everybody on the waiting list. And if you didn't sound like you were serious enough, they were going to bump you off the waiting list, regardless of how long you'd been on therefore and and give you a lesser I don't know what it was um not even but not an assessment But there was a huge uproar and uh that they quickly shelved that I did.

Mark

If you weren't serious enough, in what way? Like as in you weren't autistic enough?

Lucy

You weren't rainman enough, yeah.

Mark

Are you shitting me? Oh, my God.

Lucy

I don't know how they were going to make the assessment because, again, you're only relying on the quality of information that was put in the original referral. Oh, so you could be five years old by that time.

Mark

Yeah, and you can't like depends where the person is, right? Like if you if you take Otto into the middle of a meadow, he's absolutely fine. If you drop him in the middle of a shopping centre, he really fucking needs help.

Lucy

I think we talk about the broken system and people don't quite understand. Like we are in Desperate times, basically. These commissioners, I wouldn't want that job because they're making decisions about should we spend this money on cancer A treatment and everyone needs the money.

Mark

I mean, fundamentally they're cutting a very small pie and having to feed lots of people. And so as you say, they're tasked with making that incredibly difficult decision of how to carve very meagre rations And some will prioritize neurodiversity more than others, I guess. One of my questions It comes back to the scepticism thing. It's down to people. These are people making decisions. So if these people are. sceptical, or they don't understand neurodiversity, or don't uh appreciate that it is a problem rather than a fad, then they're going to be less disposed to Proportion that the budget for that? Is that why we see such a disparity in the different

Lucy

I think that is part of it. So it will depend on who has got the loudest voice in those decision making meetings. And so yes, I think it will depend On whether there are people that have an understanding of it.

Mark

So, if we go up the chain, then how do people get onto those boards?

Lucy

Mm. Well, they apply for jobs on that. I mean, some of them are clinicians. So some of them are doctors of different and nurses and other health care professionals. And it's a leadership position, you know. Right. So it's not voted for.

Mark

It's not an election. It's just like, I fancy doing it. And it could be I mean, obviously, people who are very experienced and very, you know. very accomplished in their field, but they might have a very different view of neurodiversity than others, and there's no no one gets any kind of say in that.

Lucy

Yeah, I mean, part of the part of the thing that feeds into the integrated commissioning board are that there are these things called GP collaborative boards, so representatives from all the practices in the area of GP practices. meet regularly and that feeds into the so the integrated commissioning board is a board of people. So it's a big group of people that meets. But decisions will also be made, I imagine, in little meetings, committees that are off of that main board. And again, it will depend whose voices are in that room.

Mark

Yeah, absolutely. And I'm I'm aware that I'm sounding like a c conspiracy theorist here. Like I don't I don't believe it's human nature, isn't it? Right, but I don't believe that there are like loads of skeptics right up. The top. Like, that's not what I'm saying. I believe that the vast majority of people are really, really professional if there aren't people championing exactly.

Lucy

neuro affirming pathways, then we won't get those neuroaffirming pathways.

Mark

Yes, I think that's so if you are You know, you're a very, very well established medical professional and you're hugely neuroaffirming. Can you apply for those jobs on the ICBs, please? And let it filter down. It's yeah, like you say, it's not it's not a fun job to do, is it? But that is really me just trying to understand a little bit more about why the different you know, why there's such a disparity. And I think that that makes sense. And I'm sure it's only one of the different reasons for that. Is there any others that could be at play here other than the local experi you know, other than the training and understanding of individuals?

Lucy

The other thing is, yeah, so on the ground, clinicians will be developing ideas for services and putting those to the committee. Commissioning boards saying, Look, we could run a service like this. You know, here's a business case that we could run this service. So, again, it depends a bit on the clinicians on the ground. and how much time and energy they've got in terms of putting together those ideas for improving their services and offering those different ways of working to the ICB. But again, you know, in an overstretched service, creativity is thin on the ground. Yeah.

Mark

Yeah, just energy. And yeah, I can imagine.

Lucy

I I would just say, because I think, you know, if you work for CAMHS or any service like that you know, a bit like being a commissioner. I imagine working in cams must be soul destroying. Oh my God, I can imagine. Knowing like the moral injury of having to reject referrals. Yes. you know that you can help that child. So I want to shout out to everybody working in CAMS really.

Mark

Yeah, the institution is very much maligned. It is again largely down to budget rather than competency. I think there's a lot of systems that could do with being improved and processes that could do be doing improved the f certainly in terms of the admin that we have to fucking go through just to be part of the process. However, again, that's probably budgetary as well. The fact we have to fill out handwritten forms, for example, is like all of this is to do with budget. But the people within that, within CAMHS Within the NHS, a try him really hard. And you know, as you say, it must be really disheartening for you as a GP as well to be forwarding people to these services that you know are probably going to say no. And that's not because the people in front of you don't have a need. It's because they don't meet the criteria or they don't meet the the threshold for what qualifies as getting support.

Lucy

Exactly.

Mark

So let's look forward a little bit. I'm interested, right? Because you have an inside view on the NHS and the healthcare system. Let's just assume for the sake of argument that the system is fucked, right? Let's take that as our baseline, okay? Or, you know, certainly in need of repair, you know, it's crumbling. If we were to put finances aside, because I know that the answer would be, let's give it more money. And then that money can be apportioned, people can be supported and helped. Like if we had unlimited money That would be great. We could update all the systems. We could give all of the services the money and people will get the support they need. That'd be amazing. And you wouldn't have to reject people. However, that is not realistic. Just putting that aside, let's just imagine in some crazy world that money is no object. What do you think would help?

Lucy

So I think we need a cultural shift, don't we, across society, but in in healthcare. And I think that starts with training of our in undergraduate training nurses and doctors in their undergraduate training from the get go need the concept of neurodivergence and neuroaffirming practice Needs and the idea that it's everybody's problem. Yes. So we don't get orthopedic surgeons saying, How is this relevant to me? It's relevant to everybody.

Mark

Yes, because you're talking about patients, and patients are neurodivergent.

Lucy

Exactly. So that needs to be sort of embedded in everybody's practice. We talked about this. In fact, you know, you suggested this. I've written this down in my notes. A neurodiversity champion in every single GP surgery. And actually, that doesn't have to be a clinician. You know, it could be a secretary, it could be you know, but somebody whose job it is to think about how do we make a care for people better in the practice, which might be making a quiet corner of the waiting room that people Can go and sit too. Yes, thinking about the lighting, yeah, that kind of thing. Yeah, can we block off the first sloth of the day for people, or the last probably not the first slot of the day, thinking about I certainly never be up. But the last slot of the day to be an autistic friendly slot so that you can come in at the end when there aren't loads of other people in the waiting room and be seated. double appointments for you know, those sorts of things. I think integrated assessment pathways, if we are able to have assessments. Oh, yes. So an integrated assessment pathway that actually is a neurodivergent assessment. where we could look at the charity. Look at all of the facets of it.

Mark

And yes. Exactly. Yes. Would money's not an object. That would be wonderful. Just have a big team of people.

Lucy

And post-diagnostic support.

Mark

Oh my God. That's yes. Where do I sign up for that? That's amazing. Yes.

Lucy

Yeah.

Mark

Yes. Once they're diagnosed, that's it, really, at this point. Yeah. It's like, all right, good luck.

Lucy

And for things like so there are a lot of things that aren't commissioned at all. So there are very few services, for instance, for ARFID in the country. Yes. So avoidant restrictive food intake disorder. Very few services that we'll see anyone with Potential ARFID across the system. So, those sorts of services I think we will need. So, I think we need better resource specialist teams. So, things like CAMHS, Community Pediatrics, Eating Disorders teams. To be better resourced, I think we need more research. I'm an academic as well as part of my job, so I do research not in this area, but I think we need more evidence from research about what works. So what interventions work to support families and young people with neurodivergence. So what therapeutic interventions, what support packages actually help? And then we can actually put those in place.

Mark

But then if things are more holistic, if you're looking at their entire neurotype and every potential co occurrent condition, then you would have a better insight into what works for that specific makeup of neurotype because it's so dependent on what their profile is.

Lucy

Individual, indeed, exactly. But at the moment we've got very little evidence. I mean, thankfully, we're not like the states, we're not pushing behavioural approaches.

Mark

We've got ABA and things like that. Yes. Yeah, ABA and stuff like that.

Lucy

We don't have really in this country, thank goodness. Beat it out of them. Exactly, yeah, yeah. And then, you know, actual funding. We'd have more GPs obviously because we're really short on GPs. We'd have more GPs so that we can have proper shared care for things like ADHD.

Mark

Yes, just money.

Lucy

All the money.

Mark

That would be that would be a really good start. And in a utopian ideal, that would be amazing.

Lucy

But some of these things I think you can do without money. So integrated assessment pathways, I think, could happen. That Minnie just means shifting, doesn't it? It's a redesign of service rather than

Mark

diminished, right? I know it it does take it wi it will take some degree of money. But the other thing is, I guess, an understanding that by doing this and by implementing these changes fundamentally, you're going to save money elsewhere on much, much more serious issues because of the unmet needs of and and neurodivergent hordes, for want of a better expression. You know, all of the people that are late diagnosed that have had so been misdiagnosed and mistreated and had to in experience really poor mental health provision.

Lucy

I was going to say, it's the mental health that I see most, and that's where I most come across this with adults. And I often say to them you've had this long history of, you know, anxiety or agoraphobia or do you think you might be neurodivergent? Because that really seems to me to underpin a lot of those people with chronic, you know, Health problems.

Mark

Yes, I mean, that's the other thing that I would suggest, which I think someone else has suggested. If a child is diagnosed Autistic, automatically look at the parents. Okay, you know, while you're here, you might as well fill out the same form. Just, you know, no judgment, just getting an understanding. We're going to assess the entire family.

Lucy

Yeah, brilliant.

Mark

Well, you know, we can hope, can't we? It's not all rubbish. Okay, so we'll look at the positives now, because it isn't all doom and gloom. Obviously, um, you know, the system I think we have identified is broken, but there are some little green shoots of optimism. I think the Oliver McGowan training that we discussed earlier. came from tragedy, but has become a really positive thing that people are engaging with, as I understand it, which is great. Also, I think that there are as we again as we discussed, there are some phenomenal people within the healthcare system that are they're not doing it for money, that's for sure. You know, they're doing it for the l the desire to help people and they are going above and beyond to bridge the gaps that exist in this healthcare system. Because the healthcare system is broken, and there are people kind of just filling in the gaps and doing whatever they can to try and stop it crumbling. And like a massive thank you to everybody in that system, yourself included, who are just doing what you can to help us parents of neurodivergent kids to the best of your ability and to the best of your resources. Another positive obviously is the NHS. I know it's flawed, it's but it is a wonderful institution and it's envied around the world. Just speak to most Americans who get it, who will see that and you see how much they're having to pay for The care, you know, have to pay for their medical care. And you'll see that the NHS is treated with this curious bewilderment. Like, you can just walk in and get help and not have to pay for it. It's like, yes, we can. And yes, we might moan about it because it's not perfect. but if someone criticises it or tries to diminish it, we will be fiercely protective of that, which is quite quite like how I feel about my own kids Basically, I comman about them, but if anyone else does, fuck them. I think there are some definite positives there. Have you got any positives you wanted to kind of shine a light on here, Lucy?

Lucy

Yeah, I mean, I guess it's it's not really part of the healthcare system, but we we've sort of offshoots of the healthcare system now, we've got things like social prescribing that can be really good as well. So often you'll be referred to a social prescriber who can help connect you to community organizations. I've referred a an autistic young man to the social prescriber. He wanted some work, but it was very difficult for him to to to get him to work. The but the social prescriber supported him with that. So I think that's really helpful. The other thing I would say, again, sits outside the healthcare system, but peer support is really important. So I think really an amazing community Groups. Yeah, definitely exactly.

Mark

Find your people. As you say, you've found your little community, very specifically mums in healthcare with PDA kids. It's very niche, but the more niche you go, the more support you can get because these are people that see you and understand you, and that's really important.

Lucy

Shout out to the medic mums and PDA kids, WhatsApp group. Love it.

SECTION INTRO

Neurodiversity Champions

Mark

Okay, neurodiversity champions. Now, these are the people and organizations that are doing wonderful things in the world of neurodiversity. Have you got any neurodiversity champions that you want to shout out to?

Lucy

I do. So Murmuration Community, there's two fantastic women, Poppy and Naomi, who founded Murmuration Community and I went on to very early on in our journey when things We're falling apart, and I was off work, and it was all bad. I don't know how I found out about it, actually, but I found out that they were running nurture groups. So these are groups where parents of seven children can come together in a space, a weekly group where you come together with a snake group of people and it's sort of facilitated we talked about our feelings and what was difficult and it might sound difficult, but there were tears and there was laughter and it was a safe space. And I'm now in another WhatsApp group with those women who I was in the group with. And we constantly text each other like, you're never going to fucking believe what's happening tonight. It's like, I mean, I will believe it, but go on. I will believe it, yeah. Yeah, they they run like retreats with parents, not and not like, you know, you can't go away for a week or anything. It's like a half day. But it's a space. Just a space and that's so important, isn't it?

Mark

It's just having that space with with like-minded people who uh who understand it and get it. Yeah, massive shout out to those. I'll put those in the show notes. Have you got any others that you want to mention?

Lucy

Yeah, so there's another charity locally in Bristol called Incredible kids, which also supports children and families with special needs kits, and they provide lots of support. They provide play sessions for kids. They support with like EHCP stuff and those sorts of things. So they've also Be brilliant.

Mark

Great. Okay. I'll give those a shout out. I'll put those in the show notes as well. I love hearing about what's happening in other parts of the world because obviously I know what's going on for me. Like, I really like hearing about all these little grassroots neurodiversity champions that pop up and how many things are active around the country. So, I'm going to put a request out for any Neuroshambles listeners who want to Just give me a little window into what's going on near you. Just email them into me and I'll give them a very quick shout-out. Just it's just heartwarming to know what's going on elsewhere, and I want to give as many people a little toast as possible.

SECTION INTRO

Tiny Epic Wins

Mark

Okay, tiny epic wins now. These are the moments that for neurotypical families wouldn't be a major Deal, but for our neuroshambolic households, they are epic wins, and I always love these. Have you got any tiny epic wins for me, Lucy?

Lucy

Well, we obviously it was Halloween and we didn't have any tears. on Halloween, which is like almost unheard of. We managed great trick or treating without any meltdown.

Mark

You went trick or treating in costume

Lucy

in costume, in a Spinosaurus costume that we'd made. That's amazing. Yep. And no tears or meltdowns. Last year was V bad. We had lots of tears, big meltdown. threatening of a rock being thrown at me last year for things got you know the emotion the regulation was real last year. This year, we had two friends over for a little party in the afternoon. No tears. We went out trick-or-treating. No tears. I don't know what that is all about.

Mark

That sounds amazing. That is an epic win. I think all of your tears ended up in my house. Sorry. Because No, no, it's fine. I'm not diminishing yours. Take the win. But yeah, Halloween was an absolute shit show for us this year. It is normally they love it, but I think we just swapped over for whatever. reason. I'm hoping that our next year is like your this year.

Lucy

You're back to normal. Back on normal. It's a lot of it's a real you know, it's the same as, you know, all the holidays are a nightmare, aren't they? Yeah, yeah, yeah. Too much.

Mark

But I'll celebrate that win. I got a tiny epic win in India, went on a school trip recently and actually enjoyed it. Now, I speak to you today because during the day, Otto is currently off school because he can't handle a school trip. It is not an easy thing for my kids. And so it was like. You know, let's just reduce all the overwhelm and the dysregulation. You do not have to go to the opera, Otto. That's what they're doing. Like Lovely idea, just not for my kids. Well, the flip side of this is that India did go on a school trip to Brighton Museum to see an Egypt exhibition and she actually told me about it afterwards. She shared information, which is unheard of, because whenever Jay and Otto went, I would hear nothing. It was just like, you know, so. The fact that she came back, she told me some facts about Tutan Khamoon and what happened. It was just so gloriously different from anything that I experienced with the boys. It was really lovely. Thanks, India. You legend. She did complain about the fact they made her use hand sanitizer and it made her lunch taste disgusting. But apart from that, it was a good day all round. So I'll take it. What the flip? Okay, what the flip moments now? These are the moments where an neurodivergent children will say or do anything that completely confounds and very often dispirits us. Have you had any what the flip moments in your household, Lucy?

Lucy

I mean, I am you know, much like yours. It's daily. I actually spent a long time again, this is pre-burnout, pre-diagnosis. I used to document what the first words my son said to me in the morning was. Oh, really? I've got a little note on my phone called Morning Music because they're just so funny. And they're never morning, you know, it's never going to be fun. No, no, of course not. I'm an iguana. It's a type of little lizard that swims in water, but I'm just a learner because I'm a little baby one. I'm your baby pet. This is literally the very first words that come out.

Mark

So you walk into his room and then this just comes out. Like he's been waiting to tell you. Fine and I can get this off my chest. I love it.

Lucy

Did you know you can milk cows in Minecraft? That was.

Mark

That's so lovely. He's just been waiting to share this for you.

Lucy

But actually recently he said, having ADHD means my days are like heaven or hell. There's nothing in between. Although I have had a few middling days recently.

Mark

It's interesting when they start to become sort of older and they can articulate themselves a little bit more, isn't it? And there's yeah, but y It's just a shame that you're missing out on those little lizard days again.

Lucy

I know.

Mark

I once woke up Jay went, Good morning, Jay. And he went, Good morning, Hellspawn. I was like, Oh, okay. I'll close the door. I'll let you get up in your own time.

Lucy

Yeah, we got a lot of that.

Mark

I've got some what the flip moments. I got one that Jay said to India I just overheard from a different room. He just turned her away. India, you have the cultural awareness of a potato.

Lucy

Sick burn.

Mark

Slam. Yes, sick burn indeed. India's just like, okay. And another one I had was a discussion that I had with India. where we were talking about something talking about going out and getting something from the shop. And I went, Let's kill two birds with one stone, which I know now that India takes things very literally. So her response was, I say kill two humans with one knife. I don't like birds being killed with rocks. I prefer animals to humans. I was like okay, fair enough. I'll just won't use that again. Yeah, okay. But let but let's not kill humans either. Let's just not kill anything. Let's just get two things done at the same time, yeah? Call it quits. Fine. Okay, that's it for this episode of Neuroshambles. Firstly, Lucy, a massive thank you for emailing me in this suggestion because it's been a really interesting Chat, certainly for me, hopefully for listeners as well. So, thank you for spending time talking about your experiences and lifting the lid on the healthcare system because there's a lot there. There's a lot there.

Lucy

You're very welcome. Thanks for having me.

Mark

And thank you also to Neuroshambles listeners for continuing to download and comment on the socials and send me lovely emails and comments and reviews. You know, if you want to leave a review, that's also very welcome. That helps to Raise its profile in the algorithms. So please do that if you haven't already. If you want to follow us on the socials, you can get me on Facebook or Instagram or TikTok. So find me over there. And say hello. Other than that, I think all that remains for me to say is have a nice life.