Health - spotlight on the 'H' in EHCP, Carrie Grant

Nuala McGovern: [00:00:00] Hello and welcome back to SEND In the Spotlight. I'm Nuala McGovern.

Hopefully you've already heard our bumper episode all about the government SEND reform proposals for England in collaboration with Woman's Hour on BBC Radio Four. If not, have a look for it on the SEND in the Spotlight podcast feed. The episode you're about to hear was recorded before the Schools white paper was published, and in it we are looking in depth at the ‘H’ in EHCPs. That is the health part of education, health, and care plans as they stand now. We will be hearing from one mum about what her day looks like before she even gets her child out the front door, and what happens to meet his medical needs in school. We also have breaking news about a new parliamentary session, which will be looking into exactly this, [00:01:00] And we will be talking about a separate inquiry by MPs into the mental health of children and young people.

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Welcome back to Carrie Grant, SEND parent and broadcaster. Hello, Carrie.

Carrie Grant: Hello.

Nuala McGovern: Also, joining me down the line is Becci, mum to 6-year-old Keir. Good to have both of you with us for this episode. Becci, I'm gonna jump straight in. Can you explain why the H is so important when it comes to children with SEND like your care.

Becci: Yes. Well, without it, my son wouldn't be able to go to school. Um, he has a lot of medical needs and a lot of intervention that has to happen throughout the day. Um, without it, he, he could die. Um, so, um, we need the health in the EHCP to make sure that he can actually attend school.

Nuala McGovern: Um, let me turn to you, Carrie. How important is the mental health that is a key part of [00:02:00] EHCPs?

Carrie Grant: It's absolutely vital. It's critical, and it's the difference between life and death. Yes.

Nuala McGovern: So it's interesting both of you talking about just how important, significant, impactful it is when it comes to the EHCPs. Also here with us is Jen Craft a Labour MP with news of not one, but two pieces of work that MPs are going to be doing about health and also its impact on education.

And we're going to get more into the details a little later, Jen, but very briefly give us an outline.

Jen Craft: Okay. So, um, the first session is a one-off standalone session looking at the H in EHCPs. Um, we are the health and social care committee, and it's following on from a much wider piece that the Education Committee did on SEND, but acknowledging that the H part quite often makes up about well, 50% if not more, of what a child's needs are in order for them to attend education and actually really [00:03:00] thrive while they are there. We are going to be looking at the professionals who support children. We're going to be asking if there are enough of them, if they have the resources they need to do their job, and we're going to look at where the, what is needed going forward, particularly in relation to workforce and how that can kind of interact with current system and with any kind of new system.

And then the much wider inquiry that we are doing, we are doing it with the education committee, and that is looking at children and young people's mental health, and that will be a really big piece of work. Looking at kind of the whole spectrum of child and adolescent mental health from that kind of social emotional wellbeing. So mental wellbeing, situational reaction, you know, those kind of emotional thing. How do you build resilience? How do you support children and young people to do that? All the way through to chronic and persistent lifelong mental health conditions that sometimes emerge in adolescence or even before. And again, it's a whole systems thing we're looking at. Is [00:04:00] the support currently working? Do health and education interact well enough together? Are there sufficient professionals? Are they where they need to be? What role do schools play? What role does the health service play? And then we'll be writing a report and making some, I'm sure, fairly weighty recommendations to government.

Nuala McGovern: I think a lot of people will want to read that report and have very much thoughts about some of the aspects that you've laid out there. I wanna bring in our education reporter, Kate McGough. Kate, good to have you with us. When did health start being included in education plans for children with SEND?

Kate McGough: 2014 essentially is when the Children and Families Act came in and introduced education, health, and care plans as we know them, and also expanded them to cover young people up to the age of 25. Previously they were known as SEND statements and were a lot more education focused. So the aim of bringing in EHCPs a decade or so ago was, was to be more joined up really between education, NHS, [00:05:00] social care around an individual child's needs, and they are a key part of an EHCP now. You know, you've got two sections that must be filled in relating to healthcare, one that identifies health needs and another that has the plan for that health provision. Obviously, parents are really entitled to go and get their own health advice from like private health professionals, but essentially they're supposed to be a key part alongside education.

Nuala McGovern: And you talk about it as a key part, but do we have a sense of what proportion of EHCPs require health needs to be met?

Kate McGough: In a sense all of them do. Just because SEND regulations say that health needs must be considered in every EHCP and, you know, laid out in, in that section C. And then those health needs that have been identified have to be kinda linked to provisioning other sections, maybe how they're gonna be fulfilled in schools and beyond schools in terms of health being the primary reason for EHCP. We do have some stats on that. It's actually relatively few, although we know the most common reason for an EHCP [00:06:00] is autistic spectrum disorder, which is about a third of all plans. And then actually when you get down to physical disabilities as a primary need, it's much further down the list. Only about 24,000 people have that listed as a primary need compared to, you know, 200,000, which have autism, which I know does have some health implications.

Nuala McGovern: Can there be a gap between the piece of paper, what they're entitled to, and the actual reality?

Kate McGough: There can, and there are some complaints that EHCPs skew more towards the education provision and potentially health services can be slightly more overlooked. I heard about one specialist school head that was told they needed to provide hydrotherapy within school rather than through a local NHS provision, just for one example, and even once you get everything you want within the EHCP, following it in reality can be a bit harder when you're thinking about staff training, particularly on health issues in schools. You know, some access to occupational therapists or physios. If you are unhappy with what the health provision is in the EHCP, you can [00:07:00] go to tribunal and get it changed but that obviously we know can be such an arduous process, long process. I did speak to one young woman, she's called Evie and she's 19. She got in touch with the BBC because she has quite complex needs that couldn't be met in her mainstream school. She tried to stay within that school. She managed until year 10, but her needs became too great, her physical needs, and she ended up within specialist provision. But she felt that academically she was too bright for that. So there are some young people that fall in that gap.

Nuala McGovern: Thanks very much for that. Kate. We are talking about the H in EHCPs and for many families getting to school begins way before actually reaching that school gate. Let us turn back to Becci to hear a little bit more about your experience. Becci, can you explain a, a little of what, uh, Keir's condition is?

Becci: Yeah, so, um Keir’s is very rare with his genetic disease. It hasn't actually got a syndromic name at the moment, so it's GABRB 3 is the specific title, and it's a [00:08:00] disease of the brain. So completely random. We didn't know when I was pregnant with him, my other children were born very healthy, um, and he just started having seizures at two months old.

Very difficult time. And we were actually living and working overseas in China. So he was born there and we lived in a Chinese hospital for about a month with him, whilst they amazingly did the genetic testing very quickly, and figured out that it was incurable, it would lead to death. And they told us he would probably pass away before he was two. So he's doing very well to be six now. But most children with this disease don't make it to teenagers. And it just threw our lives into turmoil because obviously I had to stop work and deal with the fact that I had a child that was going to die at some point. And on top of that, you know, dealing with constant seizures, medication, the physical side of picking him up and hoisting, you know, all that. As he's got bigger, the physical side has become much harder.

Nuala McGovern: So let's start with [00:09:00] the morning shift. What does that look like for you and your son Keir?

Becci: So after quite a busy night getting up and suctioning and dealing with seizures, administering medication, I generally try and start his routine around 6:00 AM. So I'll keep him in his bed, administer all of his medications through his gastrostomy. So Keir can't have anything orally because, um, he'll choke on anything that goes in his mouth. So everything goes through his peg. So all of his anti-epileptic meds, all of his dystonia medications, things like that. Then I will have to make up some blended food for him. But in between that, I'll also have to hoist him out of his bed onto my bed. I sleep downstairs with Keir and once I've hoisted him onto the bed, I'll have to change his pad. Um, Keir, I have to empty his bowels for him twice a day, every day because he can't, um, poo for himself [00:10:00] anymore. So the morning I use micro enemas. In the evening it's a bit more, um, extreme because I have to do what's called a bowel wash out. So I'll then administer the enema, hoist him back into his bed, and then whilst trying to see to my other children as well, give Keir his food, some milk, some peppermint tea. And then once he'd been to the bathroom, hoist him back out, clean him all up on the bed, on the mat, put a school uniform on him and he has to have a full back brace as well. So he is in very big brace I put on him. Then hoist him into his wheelchair. Whilst this is going on, he'll be having multiple seizures, um, which will require all sorts of rescue medication if need be, or I'll just hope that he comes out of his seizures himself. If it's the winter and he's got a cold I'll need to suction him at the same time, which is always difficult around feeding time because it's very easy then for him to vomit whilst I'm [00:11:00] suctioning him, which then can involve a complete change of clothes for him again, with more hoisting and by normally about 8.30 PM I've got all the meds in him, all the food in him. He should be clean and dry in his wheelchair… Bags packed for school, suction machine charged, all the feed made up to go to school with him and then we are very, very lucky that transport pick him up at about 8:30 AM.

Nuala McGovern: That is a shift, that is a real morning shift, like being a full-time nurse really for those hours in the morning. And, and I'm wondering, you say transport comes to pick him up. How is the school able to meet his health needs? Like how are they incorporated into his EHCP?

Becci: Well, we are very, very lucky with the school that Keir attends. They're incredible with him. They really are, you know, first and foremost, I need them to keep him alive and pain free and, and make sure that he's safe and, and they do it tremendously well. So he's [00:12:00] got a lot of healthcare plans attached to his EHCP, which are reviewed annually. There are three full-time nurses at the school. We have an OT at the school, a physio, a visual impairment lady because Keir is also registered blind, but they still check in with him every term just to check his eyes again and again.

Um, the nurses can administer his (drugs), his rescue meds. The actual teaching staff in his class are all trained with Keir’s suction machine, on how to spot his seizures, on how to feed him through his gastrostomy site. So his main three healthcare plans on the EHCP are gastrostomy, feeding, suction - oral suction, and epilepsy.

And then within that as well written into the H part of the EHCP is also the fact that he benefits from ongoing physiotherapy, OT support, QTVI support. There's a swimming pool, and the support staff send me videos of them in the [00:13:00] pool with him. They've also recently started something called rebound therapy, which they tell me Keir seems to enjoy a little bit more than the pool, which is really, it's like a trampoline, but they only do it very gently with him, but that's meant to help improve his muscle tone so they're always looking at ways to meet his healthcare needs and to keep him safe, which is primarily the most important thing. Because I'm at the end of a phone call and quite often I speak to the school at least once a day to make sure that he's okay and we have a very close link and to make sure that he's looked after safely.

Nuala McGovern: Why, Becci, was it important for you to have Keir go to school?

Becci: I guess two pronged, for Keir and then for me and my other family as well as for me. So for Keir, he needs to be around his peers. He needs, he's, you know, he's blind, but he can hear, he needs to hear other children. He needs to know that he is not in this quiet, dark world around him, which is often filled with a lot of pain and discomfort to hear those sort of the children's giggles. [00:14:00] Um, he needs to hear the staff when they're cuddling him and feel their, their body and their touch. You know, I can't do that 24 hours a day. I also have other children. I also have a job that I try and fit in, you know, so, um, so the fact that Keir can go to a school and he can hear other children and they do so much sensory things with him that again, you know, I could try and do at home, but practically, you know, setting up a jelly mould and, you know, it wouldn't happen. Um, so they, they provide all these sensory activities for him. I mean, they even took him to a farm last term, which, if I'm honest with you, leaving the house with Keir is an absolute nightmare. If you forget one medication or a machine or a pump, you're turning around and coming straight back. But the staff said, Nope, we're going on a school trip and we are taking these children. And they took the six most profound disabled children on a school trip. And he then, because he can hear and he loves the sounds of animals, that's the only time he really [00:15:00] responds is to animal sound, bird song, or to my other girls playing violin. And they said he just, he was awake more of the day, which he never normally is. So I think he gets a lot out of it. He really does. And then also me, you know, it's a 24 hour job and after you've been up all night, even to go to work is hard…

Nuala McGovern: I'm sure. Yeah. So you've had support from organizations like the charity Contact and you get some daily support at home, I understand. So you can get him to school, but you have had your own battles...

Becci: Yes, very much so. I tried for four years, we battled with social and health to try and get some support at home. When Keir is at school or at the hospice, then he's always two to one with hoisting, with personal care, with medications always checked two to one. Everything with Keir would be two adults to Keir for the safety of Keir and for the adults. Whereas I was doing everything at home. My husband has to leave early for work. One of us has gotta work full time. Um, he comes [00:16:00] home late. So the mornings and the afterschools I'm very lucky that my mom would come and help me after school. But doing all of that on your own, you know, you can't shower a child a a six and a half year old child on a shower bed, just on your own. Just impossible. And it's not safe, but it took a long time, a long, long time to win the continuing care appeal. Every time I went to our social worker - it was hard enough getting a social worker to be honest with you - and when we did finally get a social worker, I was told that direct payment scheme was for children's social care needs. And therefore, because Keir didn't have a social care need I needed to go to health. So I went to Health and I was told by health for three rounds of doing the assessment, that Keir wasn't quite ill enough for the continuing care support. And then I was just bounced between the two for about two and a half years. And in the end, social did award us four hours a week then it went up to eight last summer. So when Keir just turned six, it went up to eight hours social [00:17:00] care, which was helpful. It was. And then finally, when Keir went into stage two bowel failure last October we were told that we would now get continuing care. A week before Christmas just gone, we finally started receiving 18 hours a week, um, support from continuing care.

Nuala McGovern: But you know, you have outlined what it takes and you are remarkable, I have to say, um, in what you achieve with a smile on your face. Also, as, as you speak to us, Jen Craft, Labour MP - it shouldn't be this difficult should it? EHCPs are meant to have all the systems joined up, and I think a lot of the issues that Becci's talking about there is when she was bounced around?

Jen Craft: Yeah, absolutely. It shouldn't be that hard. I think one of the things that people assume if they're not in this space is that if you have a child like Keir, Becci that suddenly everyone rallies round and all services say, look, here is the thing that we can make your life easier and we can't make your child live to adulthood, but we can make the time you have of him perfect and special. But it doesn't happen. And I think a lot of people are [00:18:00] really shocked to find that out, that you have to go through some really undignified things as well to get that support that your child needs, and it really shouldn't be that difficult. I think this is one of those things when we are looking at changes, it's how do you make, almost, how do you make the system kind of embrace people when they're facing something like this and see not just an education need, but a holistic family need. And the idea that your son doesn't have a social care need. A social need is - it's appalling. So I, uh, trying to find the words to say it, but the idea that, you know, they're looking at prolonging an existence rather than helping him live a life. It's absolutely shocking, and I think if there's one thing that we can change as a whole system effect, and it's difficult because everyone operates in silos and you've experienced it yourself. Being that nexus between social care, education, and health and bringing them all together and trying to find the right route to get the help you need for your son, if we can remove the need for that to happen, you [00:19:00] know, have that the idea that a system looks at you as a person and your son as a person, and comes together to provide that support, that, that's something that I think is worthwhile doing. But I, I'd like to echo just how incredibly strong you are. I think it's, it's the thing about being in awe. I have friends that who've looked after and continue to look after children with life limiting conditions. And their kind of, their, their enthusiasm and their joy in their children because they are a joy, is something that is, it's really wonderful to behold.

Nuala McGovern: Yeah, it's beautiful to think of him reacting to his sisters playing violin or the bird song. You paint such a beautiful picture, Becci, and thank you for sharing, uh, with us as well. Becci you’re staying with us. Also with us is Carrie Grant. We are talking about EHCPs and particularly the health part, the H part. Carrie, for many children with SEND, mental health and the school experience can be really interlinked. Tell me a little bit about how you see it.

Carrie Grant: I mean, it's really interesting hearing Becci speak because I feel like we're like two sides of the same coin really [00:20:00] in the way that Becci is having to be a nurse and most of the parents of 300 families that I work with are having to be psychotherapists. So it's a different kind of care, um, not knowing if your child will live because of their mental health issues, our children. But across those 300 families might have eating issues, eating disorders, they might be hearing voices, they'll certainly have depression, perhaps psychosis. And the big question for many of us, I think, is that our children don't necessarily present with those issues when they're very young. And so this means two things happen. First of all, parents get gaslit that it's your problem because you're not parenting properly. But many parents would say it's when the child started school that the problems began. And so I guess for many of us, the question is, if my child wasn't in school, would they have all these mental health issues? Is this just part of their autism or their neurodivergence, or is this something that is actually being caused by school, [00:21:00] school trauma? Because we know that emotionally based school avoidance is, is rising rapidly and parents are really at their wits end with not knowing what to do. So it can take us two hours every morning to get our children outta bed into school uh, it was just a very different picture, you know, when you're walking into your child's room and the next place you look is the bed to see if the duvet is going up and down every day, not knowing if your child is, has lived through the night. That is very much our existence. Parents becoming full-time carers. Not being able to go to work and then fighting, because sometimes this stuff doesn't always show at school, but it's caused by school in many cases. That is the subtlety of it. It's less concrete in a way than those physical needs that are so clear in, in Becci's case. And, you know, all power to Becci, she's amazing. She's, um, our needs are very different I think with the, that side of the community that I'm working with.

Nuala McGovern: And I think with Becci, we saw if systems were joined up it could have been helpful in previous years. What [00:22:00] would make a difference in your experience, Carrie?

Carrie Grant: Parents being believed because I think what happens is when a child is in school, if they're masking, it's not necessarily seen in school. So parents and, and schools being able to work together, teachers getting more training, more appreciation for TAs who tend to be those people that are really the people on the ground, teaching assistants, they're amazing people, uh, but also much earlier access to children and adolescent mental health services (CAMHS). So they're just not reaching the thresholds. I think, you know, we hear about children that are on their second suicide attempt before they actually even get an appointment, and these are very real threats for us as parents.

Nuala McGovern: And I'm sure it, uh, can be very distressing to hear some of these details as well that you mentioned there Carrie, and I do just want to say that there is the BBC's Action Line with links to help and support if indeed some of what we're discussing has been distressing to you.

Um, let us continue to talk about EHCPs and the health aspect in it. [00:23:00] MPS and decision makers are thinking about it. Jen Craft, as I mentioned, is with us, the Labour MP on the cross party, the Health and Social Care Select committee.

We're breaking this into two parts. You were talking a little bit about this earlier. Your committee is about to hold an oral session about the H, the health in EHCPs. There has been a much wider inquiry, also launched, a joint inquiry by her Health and Social Care committee and the Education Select committee into mental health in children and young people. I mean, Carrie has outlined some of the issues that not just her family but also the families she represents have come up against. What is wrong, do you think at the moment with mental health services for children and young people, that this inquiry needs to look at?

Jen Craft: I mean, there's so much I was gonna say, how long have you got? Um, it, I don't wanna get ahead of what we're going to look at because we kind of approach it from a very investigative angle. You know, it's not helpful to say, and this is what we'll conclude, because that's not at all what we're about, but I think it if if you [00:24:00] just take CAMHS, for example, child adolescent mental health services, sorry, it's a refrain that I hear a lot as an MP and as someone that talks to parents who have been with mental health conditions. Well, CAMHS were no help at all, or I'm waiting for so long to see someone, someone,

Nuala McGovern: It's the, yeah, it's the waiting list, which can be incredibly long.

Jen Craft: Exactly as well, it's the length of time it takes to see someone. It's the fact that quite a lot of CAMHS services across the country will discharge people if they have a diagnosis of neurodivergency because that's seen as interacting in a way that they are unable to deal with, and then the child will fall through the gaps. It's the fact that I think there is a driver of children that end up going to CAMHS that perhaps might not have needed to end up there if they were given the right support at an earlier time..

Carrie Grant: It's so true. You talked earlier about children growing more resilience.

Jen Craft: Yeah.

Carrie Grant: And I kind of object to this idea that it's on the child to grow more resilience. Why can the teachers not have more training?

Jen Craft: Yeah, I think it's a mix. It's a mix of both. When I say resilience, [00:25:00] I think…So I'm, um, an adult and I'm very open about my own mental health. I don't like to call it a problem. It's not, it's a bit of me not a problem. I developed Obsessional Compulsive Disorder as a teen. I have bipolar, um, and have other bits and bobs going on as well. For me, resilience is, it's the ability to manage my conditions in a way that makes sense to my life. And it's teaching me, you know, I, everyone reacts differently to different things and the way the storms that you all weather throughout your life and it's teaching young people that however you react to them, this is how you manage to bear that impact better. You know, this is how you manage to make it …

Carrie Grant: So it's on you to bear it more, not on society to make any changes whatsoever.

Jen Craft: It's a mix of both. So I think we, I would, you have to approach society in reality from where we are.

Carrie Grant: Because I think our children are unbelievably resilient.

Jen Craft: They are.

Carrie Grant: I've taught my children to be like, knock it out the park resilient. You know, I've got an adopted child with huge amounts of trauma. I'm gonna teach that child to be resilient in [00:26:00] every way that I can. But the, if the systems don't change, then. I think that's a lot to ask of children.

Jen Craft: Yeah. When I say resilience, I'm talking about, you know, your ability to face what's gonna come at you as a challenge, and you are right, our children are very, very resilient and they have the ability to build up that bank of internal sort of strength that allows them to face things. So when I say helping children to build that, that is part of like say training teachers better, training pastoral care that they might see in school, finding ways to say, look, here are some of the tools and techniques that you can have that allow you to deal with some of the things you're gonna face. So some things in society, yes, and I come from a social model of disability should change and should adapt around you, and you should find a way to do it. But also there are some things that you are gonna face and the first time you, you hit this in life, it might not be exactly how you want to see it. And this is a way,

Carrie Grant: We’re a long way from that though…

Jen Craft: Exactly. Well, but yeah. But this is the way that we can help you to do [00:27:00] it. And I know it's a difficult one because I, I do blanch when I hear resilience because I feel like, great, if you stop throwing stuff at me, then I would be happier. But I, I need to build that internal stuff, and it's been the, the best gift I think that I've given to do that.

Carrie Grant: I feel like it's the word that is said to every single oppressed group – Yeah - Is grow more resilience, like rather than change society.

Nuala McGovern: Let me turn back to Becci for a moment. I'd be curious for your thoughts on, on why or how you think health is sometimes overlooked. We're hearing about the roundtable and inquiry and oral sessions that Jen is going to have.

Becci: Gosh. Well, I suppose I've been quite lucky in a sense in that my son's health hasn't been overlooked at school, but I have spoken to other families through the charity Contact who have had different experiences. I suppose one situation for our family where his health was not appropriately looked after was actually the, the transport system getting Keir to and from school. So I obviously have to [00:28:00] suction Keir quite a lot at home. But the LEA weren't prepared to train the PAs that ride on the transport to provide suction to a child that's choking. So therefore - other LEAs, they, you know, they had trained people, those children were able to go to the school on transport - and I was using a wheelchair. It'd be very difficult to push in three miles there, but it's just not something that our LEA do at the moment. So I have to just hope that he won't need the suction. And I signed a, a waiver to say that if I thought he would need that oral suction, that I just wouldn't put him on transport and therefore he just wouldn't go to school. Or I'd have to transport him there myself or try to. But that is a big deal, um, and especially when you're trying to get to work yourself as well and take the other kids where they need to go. So I suppose that was a bit of a barrier for our family in terms of Keir's health and him accessing school.

Nuala McGovern: I understand.

Becci: We are very lucky in a sense that when he is actually [00:29:00] at school, his healthcare needs are very much met.

Nuala McGovern: Back to you, Jen. You're about to launch a survey. What do SEND in the spotlight listeners have to do to take part?

Jen Craft: So it's part of the call for evidence as part of our children’s adolescent mental health session as we're looking at it. It will be launched, I imagine, on both the Education Select committee website and the Health and Social Care committee website, and there'll be all the details there about how you can, how you can respond to that. One thing I will say is our committee is very, very keen on incorporating lived experience into all the inquiries we do. It's one of the things we spoke about when we first formulated after the general election is that that's something we wanted to capture. Quite often when you see inquiries around health services, the one thing that is missing is people who are experts by experience. And I would say if anyone has something they want to submit, don't think, oh, I'm not, you know, I'm just speaking for me. Please actually do it. Because it's really important to understand that lived experience, like what Becci has just told us here, is really [00:30:00] useful. Yeah. When we look at those wider ranging mental health issues, and also young people as well, if your child or adolescent is of the age where they can contribute to it please encourage them to do so. And we have had sessions in the past where we've had young people, teenagers come to talk to us about their sort of experiences with the health service.

Nuala McGovern: So they need to go to…

Jen Craft: if you Google the Health and Social Care committee or the Education Committee and when it's up there, then that's how you can submit evidence…

Nuala McGovern: Jen Craft, a Labour MP and SEND parent.

Well, you might know if you're a regular listener, that each episode we put someone in the spotlight who has done something that deserves to be celebrated. It could be your child for achieving something big or small, or it could be an adult who has supported and helped your child. This week is the turn of 5-year-old Sanchéz from London. He's autistic and loves trains, so much so that he was chosen to help celebrate Transport for London's 25th anniversary.

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Sanchéz: My name is Sanchéz and I'm [00:31:00] now at Ealing Common, change here for the Piccadilly and District Lines.

Nyasha: Hello, my name is Nyasha and I'm here with my son, my beautiful son. What is your special interest? What is the best thing that you love in the world? More than anything ever.

Sanchéz: The trains.

Nyasha: Which type of trains do you like?

Sanchéz: The Victoria Northern Central Waterloo and City lines.

Nyasha: And these are all part of the?

Sanchéz: London Underground stocks.

Nyasha: Wow. It's type of a London underground train.

Sanchéz: The 209 stock.

Nyasha:  Which train is that one?

Sanchéz: The Victoria Line.

Nyasha: In May, 2025, it was TfL's 25th anniversary, and leading up to the event online, they were looking for 25 super fans. So I applied for Sanchéz under [00:32:00] the London Underground category, and then Sanchéz was chosen. It was so amazing. We were literally on a train, actually, when I got that email, we were on the Piccadilly line. The first thing we had to do was record the station announcement. So we did that and I think it was played on the 3rd of July, on the actual 25th anniversary, and it was just so amazing taking him to his local station, a station that he always goes in and out, and him being able to hear himself on the announcement was so amazing.

Sanchéz on the Underground tape: Hello, my name Sanchéz and I'm a super fan of the tube. It's TFL’s 25th anniversary so join me and the other transport super fans are saying a big happy birthday.

Sanchéz: That made me feel good.

Nyasha: Aw. Why did it make you feel good?

Sanchéz: What?

Nyasha: What about being a TFL super fan made you feel good?

Sanchéz: Because you [00:33:00] get to be a winner.

Nyasha: Oh, and what did you win? Can you tell everybody what you won?

Sanchéz: I won a cab ride on the Bakerloo line.

Nyasha: Wow…

Sanchéz: To the oldest station Baker Street. I got to open the doors and close them.

Nyasha: Wow…So you were like a real live train driver on the Bakerloo line.

I have an older son, so I could notice straight away that something was different about Sanchéz. And as I was navigating the journey of getting him a diagnosis, it was, you know, a very stressful time. And I had taught myself that, you know what? Instead of dwelling on the negatives or the things that Sanchéz is struggling with, I then decided to notice the things that he has strength with. And I noticed that he had this really intense passion for trains. I found that anytime we talked about trains, spoke about trains, read about trains, it brought him such joy. I would take him out, pack a lunch, and would go and sit on the train. We'll be [00:34:00] like, plan a new journey. It just brought him so much calm.

Nyasha: What would you like to be when you grow up?

Sanchéz: A train driver

Nyasha: Why would you like to be a train driver?

Sanchéz: Because it would be very cool.

Nyasha: What train would you like to drive? Which route would you love to drive?

Sanchéz: I would like to drive Brixton to Walthamstow Central.

Nyasha: Can you say bye to everybody?

Sanchéz: Okay. Bye-bye…

Nyasha: And tell them remember to

Sanchéz: Be safe on the London Underground, and please Mind the Gap.

Nuala McGovern: He's totally right. Victoria Line is the best line. Sanchéz and Mum Nyasha there. And if you'd like to nominate someone to be in the spotlight, just email us, send@bbc.co uk. We would love to hear your story. That is all for this episode. I want to thank Carrie, Jen, Becci and Kate. It is a goodbye from all [00:35:00] of us.

All: Goodbye. Goodbye, goodbye.