SEND Parenting Podcast
Welcome to the Send Parenting Podcast. I'm your neurodiverse host, Dr Olivia Kessel, and, more importantly, I am a mother to my wonderfully neurodivergent daughter, Alexandra, who really inspired this podcast.
As a veteran in navigating the world of neurodiversity, I have uncovered a wealth of misinformation, alongside many answers and solutions that were never taught to me in medical school or in any of the parenting handbooks.
Each week on this podcast, I will be bringing the experts to your ears to empower you on your parenting crusade.
SEND Parenting Podcast
EP 137: The broken UK SEND system with Rebecca Harrison, founder of SEN Home Ed Circle
The postcode lottery in UK's SEND system isn't just frustrating—it's devastating families. This raw, eye-opening conversation with Rebecca Harrison reveals the shocking truth about educational inequality across neighboring boroughs.
Rebecca brings a uniquely powerful perspective as both a former SENCO and mother to two neurodivergent children. Despite her professional background and intimate understanding of the educational system, she's been unable to secure appropriate schooling for her autistic son—all because of where they live. While her local authority offers minimal provision through converted village halls and makeshift attachments to mainstream schools, just a mile away in neighboring boroughs, dedicated autism schools and comprehensive support services exist.
The conversation exposes the painful reality many families face: diagnosis delays stretching years, mainstream schools excluding children after mere weeks, and the agonizing choice between relocating or accepting inadequate support. Rebecca shares her discovery of hidden NHS diagnostic quotas that arbitrarily limit autism diagnoses per financial year and reveals how government "Safety Valve Agreements" incentivize local authorities to keep children in-borough at any cost—even when appropriate educational settings don't exist.
Yet this isn't just a story of systemic failure. Rebecca has transformed her frustration into action by creating the SEND Home Ed Circle, an online community providing resources, lessons and support for families educating neurodivergent children at home. Her three powerful tips—never give up, recognize that neither you nor your child are broken, and "don't let the bastards get you down"—offer a rallying cry for parents fighting similar battles.
Join our WhatsApp community to connect with parents who understand these struggles. Together, we can support each other through the challenges of raising neurodivergent children in a system that wasn't built for them.
Click to Join our private SEND Parenting WhatsAPP Community
www.sendparenting.com
Welcome to the Send Parenting Podcast. I'm your neurodiverse host, dr Olivia Kessel, and, more importantly, I'm mother to my wonderfully neurodivergent daughter, alexandra, who really inspired this podcast. As a veteran in navigating the world of neurodiversity in a UK education system, I've uncovered a wealth of misinformation, alongside many answers and solutions that were never taught to me in medical school or in any of the parenting handbooks. Each week on this podcast I will be bringing the experts to your ears to empower you on your parenting crusade. If you're looking for a safe space to connect with other parents navigating their neurodiverse journey, our private WhatsApp community offers support, insights and real conversations with like-minded parents who truly understand. Join the conversation today. You can find the link in the show notes.
Speaker 1:In this episode we will be diving into the postcode lottery that so many parents face when navigating the SEND system in the UK. I am joined by Rebecca Harrison, teacher, senco and mother to two nerdiverse children, who brings both personal and professional insight into just how broken the system can be, from painfully long waits for diagnosis to being denied suitable school placements. Rebecca shares the raw reality of what it's like to be trapped in the no man's land between knowing your child's needs, help and actually getting that help. But this is not just a story of struggle. It's also a story of action. Rebecca has turned her frustration into a powerful community solution, the Send Home Ed Circle, designed to support families who, like hers, were left behind by the system. This episode is about the truth-telling, hope-building and the power of creating change from the ground up. So let's get started.
Speaker 1:So welcome, rebecca. It is such a pleasure to have you on the SEND Parenting Podcast because you have the unique perspective. You've been a SENCO, you've been a teacher, you understand education and you value the importance of education. And then you found yourself now as mother to two neurodiverse children and you cannot find an educational setting for your son. As we've discussed, because of your postcode and the lack of available schools, you haven't been able to find the right educational setting for your son, and that is what we're going to discuss today, and I'm so excited to pick your brain because you have both sides of the coin. You have the education background, but you also have the struggle and the struggle is ongoing with your own children and finding that right educational setting. So welcome, and I would love to kick us off with telling us a little bit about your journey with your son and you know what's brought you to where you are today.
Speaker 2:Hi and thank you for having me. I really, really appreciate it. And my journey started a decade ago, my oldest son's, now 10. And to be honest, from the minute he was born, we knew he was different. He used to, at three or four months old, he used to thread laces through his palms and groan and I used to think how cute. But I've never seen another baby do do that and now I realize it was a form of stimming, because he loves his palms and being touched. It really kind of relaxed him and by the time I was two and a half you just knew it was different. It was different. He didn't speak, he was in his own world.
Speaker 2:And here it's a long time to get a diagnosis for a child which, um, I was told, showed severe their words not mine, professionals, words not mine severe classic autism. We didn't get a diagnosis for my oldest son, christopher, till he was four and a half, nearly five, and it was just pathways upon pathways, upon courses, upon these courses, the delay tactics, by the way. It was just that all the time, oh, we'll grow out of it, oh, we need to monitor it, and we were desperate for help. And early intervention is the key. And because I come from that background, we and I know a lot of people could help us because I work with these professionals in a professional setting we was able to help him from early on. But I hate to think if I'd not had that background or had those connections, what would have happened, because it was so difficult with him Very, very difficult.
Speaker 1:And at least you kind of knew what was going on. You know what I mean. Like there's a whole level of confusion, not to mention doubt. Is there something wrong? Isn't there something wrong? You know it. Just, it really is a confusing place for parents to be at, even without the delaying tactics, the necessity to go to parenting courses, you know and meanwhile you've got a child who's really struggling in the environment that they're supposed to be thriving in, Exactly, and what made it worse, and a lot of parents mentioned this to me, but I've never heard it said, so I thought I'll say it is.
Speaker 2:It was in a nursery, and what the nursery never told me is they had no experience of autistic children and this was 10 years ago, and I mean autism was very much in the world, you know, 20 years ago, in my mind, 10 years ago, but they had no experience of it. So they kept frightening me and saying, well, it could be this neuro, you know neurological condition, have it checked out? It could be this and they're not qualified to say that. This particular nurse right. But it was really frightening me because I'm thinking, god, what if his brain down? Because I didn't know I'd seen autism, because I'd um teach in secondary, I'd seen autism displayed in secondary age children, but not in tiny little children so much before, and especially my own. So they kept frightening me and I kept.
Speaker 2:I got really bad health anxiety on Christopher's behalf, my son's behalf, and it was a really traumatic turmoil time at that time because I had this nursery saying it. It could be X, y and Z. It should never have said that. They used to say things in front of all the other parents at pick up time. Your child is this much behind. What are you going to do, rebecca?
Speaker 1:That made me feel that big and yeah, they used to say that all the time, and in front of everybody as well. You know, it's just, I've been there.
Speaker 2:It's humiliating and then to make assumptions that it could be, you know like it could have a brain disease or or all sorts of things. Really, my anxiety was through the roof. Um, and then I had my mother-in-law at me saying you know, there was something wrong, but not wrong in a sense that let's support him, but wrong in well. You must have done something wrong as a parent, because none of my kids are like this. Ironically, her son's diagnosed autistic.
Speaker 1:My husband Sorry, I shouldn't laugh, but you know what I mean. I can't help myself.
Speaker 2:I remember knocking on my door and saying you're not interacting with him enough. I won't say the word she used, but you're not interacting with him enough and it's your fault and that's why he's in a world of his own, because it was always somebody else's fault.
Speaker 1:Well, that's I mean classically. They used to blame mothers, actually for autistic children. They used to call them refrigerator moms and they put the entire blame on mothers for not being bonding, not being close enough. You know it's our fault which is a common theme actually throughout all of the neurodiversities that somehow we're the cause of it and that it's a problem, rather than looking at it as our kids are wired differently and need different support. Exactly, and she knew.
Speaker 2:So how did you get through this, get all through that? And at that time my own mother because you know we're at that age, you know, 30s, 40s, where your own parents are getting older and moving into, you know, might be moving into my own mother was moving into a care facility because she was extremely ill and I'm an only child and my father passed away many years ago. So I had all this and then working full-time and this was before I had my second son and I thought I was in like a washing machine and I was going crazy because I knew there was something wrong, but I didn't know what. I had nursery saying, you know, getting checked out for x, y and z and is this much behind? I had my mother-in-law saying well, it's your fault, you're not interacting with him enough.
Speaker 2:And then now all the other pressures of life on top and then my mother going into a care home and deteriorating very, very quickly to somebody I didn't even know anymore. And at that point I remember you get that stressed, you go numb and I was numbing. I was numbing out completely and the local authority wanted me to go on to this Webster Stratton course and I thought, no, I'd heard some terrible things about these courses and I wouldn't go on that course. But I went on an early bird. Um, I think it's the autistic society. I could be wrong. They don't do them anymore, but that was a fun. This early bird autistic course were fantastic one of the very few. What was good, but I remember refusing to go on this Webster Stratton one.
Speaker 1:I don't know much about Webster Stratton course. Do they still exist? Yeah, they tell you how to parent.
Speaker 2:They tell you how to parent an autistic child and it's a one-step cure-all.
Speaker 1:Okay, so yeah, which is they say, if you meet one autistic child, you meet one autistic child, exactly. So I don't think there is a one. I mean, you know, I don't think there's a one-step anything for parenting really. But okay, so it was not. It's just not helpful at all.
Speaker 2:And some people, some parents, even though they've done the course once if they have lots of, you know, like two or three other children, or on, you know, on the pathway for an autism assessment they're told to do the course again, and again, and again, and sometimes even with the same child.
Speaker 1:So it's bureaucracy, it's a delay tactic.
Speaker 2:I'm sure it works for some, but I've never come across anybody it's worked for.
Speaker 1:I wouldn't be so sure, rebecca. I think it's. I mean, my take on it is that it's a delaying tactic because they are unable to meet demands, and that's what we're going to get into. So you know, when you eventually get the diagnosis, it's not the end of the story. So how did you eventually get him diagnosed? Was it through the pathway?
Speaker 2:No, it wasn't, it was. Ironically, he kept having GERD issues. So you know gut issues and now I know that a lot of children in their early years who've gone to have a diagnosis of autism have gut issues. Didn't know this at the time and dairy was terrible for him, really awful. He kept being sick all the time but he was like addicted to dairy so he'd have to hide it and he'd get his hands on it and just honestly, he'd be like Cleopatra and bathing milk if he could have to hide it and he'd get his hands on it and just honestly be like Cleopatra and and bathing milk if he could have as a child because he loved it that much anything dairy but it made him throw up.
Speaker 2:So we ended up going to see a pediatrician um in one of the big hospitals about his gut issues because nobody understood what was going off at all, even though there's all this other stuff going off with his autism. Nobody put two and two together and I remember crying to her and saying I think this is. I've done my research, I think this is linked to a bigger thing, I think it's linked to the autism. And she says you know what it's? He is showing signs of autism. I'm gonna make a referral for you to see a pediatrician about autism and we've got a fantastic pediatrician at barnsley called dr oliver and I always give credit where credit's due amazing woman. And she said look, we've we've got to do a year's observation. Bear in mind we're three and a half at time. This should have gone on years before we've got to do a year's observation on him, because that's how it works. But she saw it straight away and just after my old, my youngest son, was born in 2020 is when Christopher got his diagnosis. So, bear in mind, it was three months off his fifth birthday when we got the actual diagnosis and when she told me, I had this newborn baby in my arms and I absolutely burst into tears and it was a mixture of relief oh, my god, he's definitely autistic all that you know into into one. I remember crying. Really I couldn't stop um.
Speaker 2:Then we got an ehcp, which were hoops to jump through, but because it was displaying you know it was it was showing his worst. You know he was his worst. Um, at that age, between four and five, and because of the lack of support, because we'd not got this diagnosis, we haven't got this ehcp, etc. Because we couldn't get the lack of support, because we'd not got this diagnosis, we hadn't got this EHCP, etc. Because we couldn't get the EHCP, because we'd not got a diagnosis, even though you can get EHCP. And at that time he was at his worst and I said to the local authority we need to send school, but they'd not done an EHCP. So they did it and they got the EHCP without any problems, because he was at his worst you know, completely at his worst at this point and got the EHCP.
Speaker 1:Was he in nursery then, or was he at home?
Speaker 2:He was in nursery at that time because I'd held him back a year because I knew he couldn't cope in a school. But because we'd not got this diagnosis, we couldn't get the EHCP. So I'd held him back a year because he is like a summer-born child.
Speaker 2:And we got the EHCP just before he went into school, but it had been a year behind himself, so to speak, went into school and I wanted to send school local authority. No, they wouldn't argue. Argue, argue with them with it. They said, no, we've got to see your child fail first in a mainstream that they didn't say in them words, obviously, but that's what they were they're at. So I found a really good mainstream which was renowned at the time for having a fantastic resource for neurodiverse children. The issue was it was times of covid in my area it's not got that reputation anymore.
Speaker 2:Things change. But I thought, well, you know, even if he has to spend a year here, because it's obviously needs to send school, at least he's got the best place for.
Speaker 1:Yeah for him to hopefully To be supported.
Speaker 2:But the issue was COVID, so they didn't have any staff. All the staff were off all the time with covid or caring responsibilities or because they had um other medical illnesses, so they were shielding, fair enough. And this is a massive school. So they've got for every year group, they've got two classes of 30, so 60 kids per year group, and they were operating on skeleton staff bare minimum to open, and what they'd often do is let the two year, the two classes in each year group, come together because they had so little staff, which was a nightmare for christopher. 60 children, yeah, now, normally they won't have 60 children together.
Speaker 2:You know they'd have two classes for that year group and they'd be separated and have the teachers and teaching assistants. Yeah, but what they were doing, from what I was told, was um and parent told me this and I actually went and saw it, but the school never told me this is they were letting the two classes per year group come together so that they could share resources and teachers and assistants and things. The issue being, christopher, at that point he don't mind crowds now, but at that point he hated crowds and from what I was told and to this day I don't think it's the whole story and it's not the full story he hid under a table, a teaching assistant tried to pull him out with his legs and he headbutted her and so at that point they excluded him. He'd been there three weeks and I was glad to go.
Speaker 1:Sounds like he had absolute overload. In that kind of environment.
Speaker 2:Honestly, he was like that you know when you see somebody really, really shaking. But no, you know this poor five-year-old child. I do have sympathy for the lady. You know we headbutted but he didn't even mark her skin or anything. There weren't a bruise or nothing there. But she tried to pull him out, apparently being witnessed by another parent, because it was at the end of the day, and that's what happened.
Speaker 1:Well, one could argue that they shouldn't be doing that physical kind of.
Speaker 2:Yeah, but they always didn't hide it.
Speaker 1:But you know what it sounds like. The exclusion was probably a good thing because it doesn't sound like an environment that would. I mean he was. He's just going to shut down more and more right um yeah and they always denied that event ever happened.
Speaker 2:So that event, they said another event happened instead. And you just know when there's some I couldn't. I didn't like the head teacher at the time either. They were very, very condescending towards me, not helpful. The assistant head, the SENCO, was brilliant, but the head no. So we had to take him out. He was excluded. How can a child be excluded at five who's non-verbal, still in nappers and still wanted to drink bottles after just a few weeks? So that happened and we had the EHCP in place at that time. Time I went back to the local authority and I said we need to send school and they said we agree, we'll write it in the EHCP. You go and look at these send schools famous last words, because fast forward, five and a half years later we're still looking for send schools. And in that time, um, christopher has been on a neotis plan education other than at school, where the local authority paid for tutors and and therapies and he's come on leaps and bounds.
Speaker 1:He yeah now to take you to. Just to pause you there, rebecca, because um and we'll talk about the e-test package and what you've had to do. But you know, when we first started discussing this, like we're talking about the different kind of the postcode lottery with local authorities and you know in your area I'd love you to share with the listeners about in your area what schools are available, what schools are just across the. You know across the county lines and the other local authority and why you can't go to them and just kind of illustrate that for us.
Speaker 2:Well, here where I'm based in barnsley, there is predominantly, there's one send school called green acre one and it's like, um, how do I put it? It's for it was built for children who have physical disabilities or neurological disabilities, and children who can't walk, who can't move the body I'm being very simplistic and how I'm saying but very much a physical disability school, um, and it's, it's beautiful inside, it's stunning, it's got hydra pools and everything, um, but it's not a school for autistic kids in any shape or form. They do try and have autistic children there, but the school was never created for autistic children in mind. They've tried various um systems to try and get autistic children in, but it's not designed for that. It is a school for physically disabled children who've got, you know, children who've got neurological conditions, things like that.
Speaker 2:So there's that school. Then we've got a pro called springwell which is for children with very severe behavioral issues. That's it. Now, don't get me wrong, the local authority, because they've signed this safety valve agreement to keep all kids in borough, to keep all kids educated in borough, they've done all these little resource provisions here, there and everywhere you know, in village halls, in all sorts, you know, to try and plug the gap to keep kids in Borough so they're not paying big money to put them out of Borough school, so they're doing schooling in church halls.
Speaker 2:What used to be church halls?
Speaker 1:yes, Okay, all right.
Speaker 2:Village halls.
Speaker 1:Sorry, I'm calling them church halls, village halls. Sorry, that's my Americanism coming up.
Speaker 2:I have a new provision I won't name it because it's not fair Um in what used to be like a village hall, Cause I went to look around it.
Speaker 1:Okay.
Speaker 2:And then they're sending kids with send needs, with EH location for their schooling. Is it like temporary schooling or full-time schooling? There's some, uh, you know the put um were also to keep kids in borough and they put, you know, like um mainstream schools. They're built like little units, um, not not very big, you know, not not like a school, uh for kids, uh, for autistic kids to go into and they can spend some time in mainstream and some time in the units. But it's all very half-hearted. To be honest with you. They are not schools. The staff there do the best.
Speaker 2:There's, um, I know greenacre's got satellite provisions, what we call them, which are connected to mainstream schools, um, for autistic kids, but they're very small. They're not schools. They're very small, they're not schools. They're like tiny buildings attached to schools. We'll call them. It's just very half-hearted and I don't want my son going to anything like that. I want him in a school. I don't want him in a room attached to a school or, in some cases, some caravans attached you know these port cabins attached or you get what I'm trying to say. I've got nothing against these provisions, but I want my son to go to a school, not an attached building. We'll call it in the nicest possible way.
Speaker 1:And.
Speaker 2:I've got nothing against the staff. I'm sure the staff are brilliant there and doing their absolute best.
Speaker 1:Well, it's interesting because I've talked to other mothers on the podcast who have autistic children as well and who felt very lost, very burnt out, very emotionally at breaking point. These children, and when they do get into that specialist autistic school that absolutely knows how to educate and to make an autistic child feel secure and safe, the children feel like they're living, the children feel like they can breathe. And I hear what you're saying having a little Lego block stuck onto a school without the proper infrastructure and then making them go back into mainstream sometimes and that can be hugely stressful. It's not the same experience and you don't see the same improvement or ability of a child to thrive in an educational setting.
Speaker 2:Exactly, and some of them don't go into the mainstream part ever. You know it's just a few rooms attached to a mainstream, but to me that's not a school. I've worked in schools many, many years and that is not a schooling system at all. It's, you know, a sticking plaster over a much wider problem in my eyes.
Speaker 1:And in the local authorities near you. Are there better examples of where children can go to schools like that?
Speaker 2:Massively. For example, I live where I live. We're next to Rotherham, we're next to Rotherham, we're next to Doncaster, we're next Sheffield. They have got independent SEND schools. They've got local authority SEND schools. They've got loads and these aren't resource provisions. These are massive schools. I've been to Warn the Willows. It's amazing, it's wonderful school. They've got all sorts of things you know like on the outlying villages. They've got all sorts of things you know like on the Outlying Villages. They've got National Autistic Schools. They're incredible. But because of places like where I live, where it's not got any provision and did in the past lots of kids there, it's kind of bottlenecked it so they've kind of shut the doors on other places sending children to their schools because-.
Speaker 1:And is my assumption correct that it costs more if you send, if your local authority sends to another? Local authority, it costs more.
Speaker 2:Is that correct About 40 grand extra a year? We'll say between 20 and 40, but yeah, per child that sounds like illegal. You know what I mean. We're all still the same government. We'll say between 20 and 40, you know.
Speaker 1:But yeah, her child. That sounds like illegal. You know what I mean. We're all still the same government. We're all still the taxpayers. Why does one local authority, if it's coming outside, pay?
Speaker 2:more for the same service.
Speaker 1:Because they can. It's almost like cannibalizing yourself. Do you know what I mean? Because it is interesting these local authorities kind of. There is no unity.
Speaker 2:It's like they're they're our little fiefdoms, they're independent nations, you know yeah they're our little fiefdoms. They're answerable to nobody. Yeah, exactly that's the word I was looking for. So that's what happens. So what our local authority did and other local authorities across the country because they're absolutely on the knees skint they signed something called the Safety Valve Agreement. The Safety Valve Agreement is where the government gives them millions on one condition you do not send any send children to out-of-borough schools, you keep them in borough. Didn't work?
Speaker 1:But with those millions could they build a school like the Willow, or is it not enough?
Speaker 2:With those millions, I don't think they'd be funneling it into building a school like the willow. Or is it not enough? With those millions, I don't think they'd be funneling it into building a school like the willow. So they need to pay off historic debt and they also need to create provision. So what do you do you think how can I create schools, a school provision which meets need in the eyes of the law, without spending too much? Because we've also got to have, you know, this historic deficit paid as well, which I feel sorry for.
Speaker 2:Councils, for government should wipe that. So instead they think right, we've got to pay off this historic deficit, but we need to create provision to to meet the needs of this money the government's giving us. So how can we do that? As cheaply as possible, but meeting the law and meeting kids need? We'll use existing buildings. We'll use old village halls and convert them. We'll put um extra rooms onto schools and call them resource provisions. We'll rent rooms at schools, these academies, and put them as resource provisions.
Speaker 2:Do you get me? That's how you do it, that's how the thinking all the time, and really a lot of it's to do with the government's fault as well, because if the government had wiped the historic deficit debt what local authorities are paying, you know, in millions and millions upon debt in, then we could all start from scratch. And if also they had, we had somebody apart from the lgo that local authorities were accountable for their actions to, life had changed very, very quickly, rather taking as the government's doing. If it kind of thought in them ways, then it'd save so much. But you know who am I, I'm just a sent parent kind of thing.
Speaker 1:And then, from your experience of these plasters that have been put on, is it working for any children?
Speaker 2:Some parents say it is, but this is what I believe, because I've looked around these provisions and I'm putting my teacher head on my senko head. These provisions, they're not schools. I'm not going to go into deep. I know I spoke about they're not schools. They're not schools. They've not got enough money for schools. They've not got enough space for schools, both indoors and outdoors. Um and for me, parents are happy that their child has somewhere to go.
Speaker 1:So it's more like a waiting room is what it's feeling like to me. Is that an accurate description or a holding room?
Speaker 2:It's almost like you know we've got some respite for a day. You know our child's got somewhere to go.
Speaker 1:No and I hear other parents because, honestly, like I don't know how parents homeschool, I take my hat off to them. I think I would. You know it would not be. It's just not pretty. I can't. You know, with my own neurodiversity it's very challenging. So I understand parents' value of that. But I guess, from your teacher SENCO perspective and this is what all of us parents want as well we want our kids to flourish. We want them to learn how to read and write and be able to do their GCSEs eventually and then go on to be productive members of society. So if those things aren't being met which is, I guess, my question to you, are those things?
Speaker 2:being met in schools or not? In my eyes no. But parents say they are. But I believe, and if they are fantastic, you know all I might say what your child can and cannot do. But in my eyes the impression I get from a lot of parents is we're just relieved our child's got somewhere to go, and as long as they're happy, you know we're relieved, our child's got somewhere to go and they're happy.
Speaker 1:That's it, and I want more than that. And then you've got over the county lines and you've got this lovely place called the Willow, where it's a whole.
Speaker 2:There's many schools like that over the county lines 's many. That willows is just one uh example.
Speaker 1:There's many like them, and you've talked about actually upping sticks. Haven't you tell us a little bit about I live?
Speaker 2:right on the border and I live in the center of south yorkshire, so I'm literally a mile from sheffield, half a mile from roverham, you know, etc. And for me, even our nh NHS here in Barnsley, you know, our NHS does not even have, our CAMHS does not have a learning disability nurse. Every CAMHS should have a learning disability nurse. Ours doesn't, but Sheffield and Rotherham do and Doncaster's CAMHS do. So you're kind of thinking it's looking a bit, you know, to move across is, you know, a no-brainer at the end of the day because you get a better healthcare system. Rotherham's got a sensory OT. Barnsley doesn't Sensory integration trained OT. Barnsley don't have one. Rotherham's got learning disability nurses for CAMHS and for their actual NHS, their NHS system. Barnsley's got one in the hospital who was literally pulled, a wonderful woman but pulled left, right and center. And then they've got all these schools as well and you're just like it's in our brain of this.
Speaker 2:Everywhere should be similar.
Speaker 1:But it's just. It boggles my mind that there can be just such a disparity. And you know you hear about it in healthcare too. You know my background as a medical doctor. You hear about, like what your mortality rates are in different postcodes in the UK. You know it's frightening, you know it really is frightening in terms of that there isn't that kind of uniformity or basic level of access for children and for healthcare.
Speaker 2:And people might say, well, use your right to choose. Can't do it, because when I've tried to use right.
Speaker 1:Tell us a little bit about your right to choose, because I think not all listeners, and it's actually quite an interesting thing to talk about.
Speaker 2:Right to choose. A fantastic thing We've used it in the past Is if you see a private medical let's say, like my youngest child for an example which you might choose for his autism assessment, if we were to go through the NHS Trust Autism Assessment Route it'd be until they were 18. I know that's a slight exaggeration, but you'd be waiting a long time. But there are other providers who have been certified by the nhs what you can use, and some of them are private providers. So and you'll always see it on the website, you know the front page if they're certified by nhs and you can go to your gp and ask to see this certain private provider or put another nhs trust. So for, for example, if I needed my son to see a sensory integration trained occupational therapist, I could ask my GP and say could we make an appointment through Right to Choose with the sensory integration trained occupational therapist who works for Rotherham NHS Trust? So don't have one in Barnsley?
Speaker 2:A fantastic service. As I said, we've done it for my youngest son's autism assessment. We were going to pay privately for it and then I saw that the private providers, the waiting list was the same for Right to Choose. So I thought, save myself two and a half grand. Go down that route and got a good GP. Not all GPs like putting patients forward for Right to Choose.
Speaker 2:I don't't know why, but ours is fab with stuff like that, and is it long process, is it difficult, or is it rather is it simple you ask is for your gp to put you through for right to choose for the provider you want and if the gp agrees with you, the filler forming takes them five minutes on computer done, yeah wow.
Speaker 1:So I mean, yeah, you, you would wonder why not everyone would be doing that thing absolutely sting in the tail.
Speaker 2:There's always good things like this. There's massive stings in the tail and the sting in the tail is this if like, for example, for example, if I wanted my son to go to see the sensory integration occupational therapist at brother mnhs trust, if they are full and they've put like a block on it on other boroughs sending in through Right to Choose to see their OT, you won't get to see them. And that's what Rotherham's done. From what I've been told by other parents, I've never needed to see that professional at Rotherham.
Speaker 1:Yeah, okay. So when they reach capacity, then they can put a block on the Right to Choose, and that's what other parents have told me, I've never used that particular professional on the right to choose and that's what the parents have told me.
Speaker 2:I've never used that particular professional.
Speaker 1:So similar to the schools as well, who also probably reached capacity and then said, even paying the extra amount and which will line our pockets, we still don't want you because we have too much need here. So it's yeah.
Speaker 2:Even for adult autism assessments, you've got to be very, very careful, very careful Again. I would always say go through the right to choose route, because a lot of NHS providers have quotas to meet and we don't know what those quotas are. You know because every area is different. So for some areas they can only diagnose 35 people with autism in the financial year, as other areas don't have a cap. So you and we are not what do you mean?
Speaker 1:they can only diagnose 35.
Speaker 2:That's what I was told you mean in a year when my husband went for his autism assessment through the NHS, um, the, the, it. It was a six to nine hour appointment but, you know, spread over three separate appointments, as I remember, and at the end we saw a trainee a trainee at the end. So all this felt sorry for him and he says we do have problems here and he shouldn't have told us this. But then I got it corroborated, corroborated with somebody I do know who works in the system, um, but we can only diagnose 35 for the year. And I says what? And he says yes, it's to do with money.
Speaker 2:And we went with my husband's diagnosis right at the end of the financial year. So you know, like near the end of March, and I thought you're not going to get it, paul, you know, and every inch of the way, because it was an awful process for my husband to go through, it was yeah, yeah, yeah, yeah, yeah. And then at the end, guess what? No, and I put a complaint in and he went to another provider through Right to Choose this time, and within 15, 20 minutes they saw his history, they saw everything, said why weren't you diagnosed straight away?
Speaker 1:So if he'd come like a month later, he would be number one of the 35. So that should be illegal, really, because your diagnostic results should not be based on the amount of people that you can diagnose with autism. If he's been accepted for the diagnostic process, then it needs to be accurate, not….
Speaker 2:Exactly, exactly, process, then it needs to be accurate, not exactly exactly, and yeah, so that's. When I asked the guy again about it, he wouldn't confirm or deny. He said it, um, as I remember, and I asked a lady who I know works in that system, and she said the other borough which this diagnostic service, um, has filtered in to their service, um, doesn't have a cap on how many people can be diagnosed, but your borough does, that's weird.
Speaker 1:I mean you shouldn't even start the diagnostic process. I mean then you should only diagnose 35 people and once you've got their diagnoses, if 20 are autistic and 15 aren't, then you can do 15 more diagnoses, whether they be yes or no. You keep diagnosing people and just say they don't have it because you've reached your quota of autistic people. That is just insanity.
Speaker 2:But we don't want people to know that you shouldn't have told us that.
Speaker 2:Well, no, we don't want people to know that I'm not surprised and I talk about it so freely because I've kept so much to myself over the years. I'm kind of thinking well, no, it's true, this is my interpretation, what people have told me outright clearly, what's happened and what I've seen with my own eyes and if people don't know out there, it's your lived in experience. So, really, so that happened. So you've got to be really careful because there's all this political stuff with finances and funding and money going off in the background, what we don't know about and what's affecting our children's diagnoses. It's affecting how our children get into schools, the education they're entitled to, if and when they get an ehcp and, if so, what's in that ehcp. So there's all that going on.
Speaker 1:And what resources are available within the county for it. Now, if you and I presume you probably are already packing your bags to leave your local authority, I wouldn't see any reason why you'd want to stay there. Now, if you move to a new local authority, do you have to stay there for a certain amount of time before you're considered one of them? Or once you postc post codes, you're immediately in that local authority?
Speaker 2:so let's say, um, where I'm based at the moment, I'm under a barnesley gp. As soon as I move, let's say for argument's sake, to rotherham and we're under a rotherham gp, that entitles us to rotherham nhs trust in theory? Well, it does, and that's. And because of your postcode, the EHCP would be transferred over to Rotherham local authority and at that point they would re-look over the EHCP and then put in consultations to Rotherham schools. Done as quick as that. Wow, wow. So are your bags packed? Well, because my mother's extremely ill in a care home.
Speaker 1:Um, I want, I want to, you know, I want to be with her to the end, and then the move is on, uh, but it's just, it's insanity that you have to add that moving as a stressor to your life, which already sounds very stressful, um to get the support. But I can understand why you're doing it because you know and and, frankly, for your own healthcare and other things, it seems like you know it's the only option open to you, um, before they find a way to block you from doing that as well. And I'm sure that will happen if, if, if, too many people then start moving because of this and some people can't move. It's not, it's not an option.
Speaker 2:I always argue parity. Parity is a big thing, because I'm always, you know, I'm always happy for parents who get their children's needs met. But where I am, the some will get everything and some will get nothing. Nobody sits in the middle and that causes parents against parents and I don't like that at all. But that's what happens here a lot.
Speaker 1:Yeah, because it's a limited and I do find that if your child is severely compromised, that then resources do kick in. But it's kids that kind of fall in between that sometimes who have the potential to be fully functioning, contributing members of society if supported and their potential is realized. Now, not to depress everyone and I know this has been quite a struggling conversation, but it's a good conversation to have because it's important that people realize this and it's important that hopefully change happens and we start advocating for this but you've taken this and you're in a place right now where your child is out of school not where you want him to be, but you luckily have the skillset as a SENCO and a teacher. But you've decided to give back to other parents who are in a similar situation, who can't find an educational setting, and they're educating from home. Do you want to tell us a little bit about your community?
Speaker 2:that you formed Because Christopher's never had a school. We've looked around 50 odd schools and they've all said you know we've got no room at the end because we're so full um through, you know, health and safety legislation. I know they're not allowed to say that we've got no room, but they can do um legislation due to health and safety. So what I created instead was um, an online portal subscription service for 6.99 a month called the Senho Med Circle, and you can get lessons on there. I know you've looked on yourself in computer science.
Speaker 1:It's amazing you have so much stuff on there.
Speaker 2:you know it's where I'd want to be. It gives you the knowledge and the support of what I wanted right at the start of my journey. How do you support non-verbal children? I'm very much about soft skills, about gardening, cookery, computer science, maths, english science, history, geography, functional skills for later on. What you're entitled to from the local authority. What are short breaks and PA hours? How do you get respite?
Speaker 2:There's even a facility on there to rent books completely free of charge on lots of different subjects to do with send and storybooks for your children, which I think is really important, because books cost a fortune, both audio and physical books and there's webinars with professionals on there.
Speaker 2:We're just doing one with a sensory ot as we speak and on pda, and then we've got art therapy lessons what I'm putting on today as well. So it's it's fantastic service and I'm going to put a community on it as well for parents. I've run a facebook group that I'm putting a community within the subscription, because all we've got is each other. Really, you know, and some professionals are good, but unless they've walked in these shoes, they don't have a clue. They can go home and at night and close the door, and there's nothing like this at all available, and if there were, I'd have been on it years ago. So that's why I created it, because, at the end of the day, I don't want us to feel alone and without access to that vital knowledge to get what we're entitled to and to make sure that our children do have early intervention or, later down the line, get that support.
Speaker 1:Yeah, and it's you know, and it's that helping hand and it's also understanding, because you've walked in the same shoes, you know, and not to feel so alone and isolated. But ultimately your goal is to move and some parents decide to to stay. You know, uh, teach, you know, supporting at home and stuff like that and using resources like that. But from your perspective, you'd really like to get your children back into school again christopher's.
Speaker 2:Yeah, you know he started off as very severely autistic, from what professionals said, and he's moved now to being able to have, uh, conversations, not like me and you, but conversations wants and needs and what he wants to do and where he wants to go. He's a very placid child these days and he wants to go to a school. He wants to try a school. He's been asking, asking. He sees his younger brother go to school. He wants to go. So I'd like him to try a school. You know, I think he'd be great because he loves other people. You know he's not because of his autism, he's not the most social child, but he loves being around other children and being included and involved and he deserves that. He's entitled to that.
Speaker 1:Absolutely, and you want it to be the right setting. You know not somewhere where you're going to put him and it's going to destroy him.
Speaker 2:Exactly, and I think he's so placid and laid back and he has come so far because his needs have been met and I've always chose professionals to be with him who have kind of brought him on in massive leaps and bounds, and I'm not going to lose that. You know, if I'd have just put him anywhere, kind of thing, if I'd have well, I didn't even have choice to put him anywhere. You know, even if I wanted to which I didn't, but let's say I'd had one of these place, not so good places it would have destroyed him. He'd have. He'd have gone backwards rather than forwards.
Speaker 1:Well, he's lucky to have a mom like you. That's what I have to say. You know you're you're a fighter and it's great that you've given back to the community as well, because I think it's. You know from the the the little bit that I dug around in it. I mean there's fabulous things. You know that what stands out to me was the cooking thing with Bea, and you know it's just fun stuff that you can do with your kids and it also helps. You know that's why I started to send parenting podcasts is because you feel so alone as a mother. You don't know what's out there and you don't know what's out there to support you. And you know $6.99 a month for all of the information you have there is a complete bargain. I've already told Rebecca she's charging way too little and the amount of time and effort you have taken to put that up for people is worth and has value too, and I will be including in the show notes links to that so that they can access that as well.
Speaker 1:Now we have been having a lovely chat. Can you believe that we've almost been talking for 45 minutes now? But so I would. I'd love to you know. I love to ask, at the end of my podcast, three tips that you would give to listeners that they could take with them after listening to this podcast. What would be your top three tips?
Speaker 2:First, most important one never give up, never give, never give up. Second one your child is not broken, and neither are you. A lot of people feel that unless they leave this cookie, cookie, cookie, cookie cutter life. You know what I mean. That's. I do know there's something wrong with you because you've got birth to a child. What's different? There's something wrong with your child because they can't do x, y and z. Wrong, wrong. There's nothing wrong with you or your child at all. It's just a different path and I know it's extremely difficult, but there's nothing. I used to blame myself. I oh all sorts. You know, when you see these people showing off on social media that their lives are so wonderful, you used to think what have I done wrong? Why can't I live like that? Just a different path, as that path is, it's a different path. It doesn't make you any worse or any better than anybody else. You're all equal. And third, don't let the bastards get you down. End of.
Speaker 1:I think that's you know, and I bet you, rebecca, if you scratched underneath the surface of those Instagram lives, there's issues there. I always say to my daughter I'm like you know what? You might not see issues with people, but everyone, no one, goes through life without issues and people that need to show how wonderful their lives are. There's a reason, and it's probably quite sad. So, I think, be happy with what you've got and don't have and stop looking. You know, and I think we're all guilty of this we think that life is supposed to go a certain way, because your three top tips really highlighted that for me.
Speaker 1:I had a vision of where my daughter was going to be, what education she's going to be. I've had to rip that whole thing up, throw it away and you know what, after you get over the sadness of it a bit, it's liberating. You know what I mean. She's going to be who she's going to be, and I'm going to support her as best as I can and I've grown, probably more than I've been able to help her grow. At the end of the day, yeah, you know, our children teach us.
Speaker 2:And you know what? I'm one of the very few people in this world who has a purpose, and my son gave me that purpose, you know, to create this subscription service and to support vulnerable people, and that gift is immeasurable.
Speaker 1:I so agree with you, Rebecca. Thank you so much for coming on the Send Parenting podcast.
Speaker 2:Thank you.
Speaker 1:Lovely meeting you. Thank you for listening. Send Parenting Tribe. If you haven't already, please click on the link in the show notes to join us in the private Send Parenting what's Up community. It's been wonderful to be able to communicate with everyone in the community and for us to join together to help each other, to navigate challenges and to also celebrate successes. Wishing you and your family a really good week ahead. You, you, you, you, you.