Schools Minister, Anna Maxwell Martin, Kellie Bright

Nuala McGovern: [00:00:00] Hello and welcome to SEND In the Spotlight, a new podcast from the BBC where we explore why the special educational needs system is so widely considered to be broken and how it might be fixed. I'm Nuala McGovern.

You are going to meet families, young people, educators, experts, and decision makers for frank conversations about what works and what doesn't. And that includes things that have become political, hot potatoes, like the steep rise in the need for school transport, for SEND children. Accusations of parents manipulating the system to gain extra support or funding for their children and the thorniest of issues - what it all costs.

Today we're going to have a chat with the school standards Minister Georgia Gould as she launches a national conversation [00:01:00] on SEND. Also with us, the actors, Anna Maxwell Martin and Kellie Bright, we'll meet Jason as well. They're all three parents who have been in the thick of this for years, and we want to hear from you.

Perhaps your child is a wheelchair user or has a profound and multiple learning disability. Well, if you'd like to get in touch, the way to do it is by emailing us [email protected] as we put SEND in the spotlight every week. We want to celebrate the big and the small wins achieved by those in this community.

This week it's the turn of Henry – here’s his mum.

Henry's mother Emma: And what about you being chosen for one of the 24 kindest people in Burnley in the Burnley Express. How does that make you feel?

Henry: It makes me feel really, really, really happy.

Nuala McGovern: So let's get started. [00:02:00] Anna and Kellie, why do you feel so strongly about taking part?

Kellie Bright: When I first started speaking out publicly about my experience as a SEND parent, I really did it for one primary reason, which was to start a conversation and make some noise.

Because I knew that I wasn't going to be the only parent out there going through what I was going through, feeling the way I was feeling. And yet I knew that for a lot of parents, they do feel so invisible and they feel like their voices are never heard. And it was really important for me to feel like I could, because I'm, I'm privileged to be in a position where I can have a big reach.

I wanted to make some noise around this so that we could really get some fundamental change and [00:03:00] make this system that is failing so many families better.

Nuala McGovern: And that we are here to reimagine. For you, Anna, what does it mean?

Anna Maxwell Martin: Uh, very similar to Kellie. Uh, only that I don't think, I did feel at the time there were other people out there.

I think I felt very, very isolated and I, I, I love the idea of this podcast as a shared community where people can contribute and talk about their lived experience and also we can talk about how we change the system and maybe have an influence on that. I think, you know, we do need to make changes, huge changes in terms of meeting children's needs in school, in the school environment if they are able to be in school.

I think we'd need to think about removing the stigmas on parents and children. Those children are unable to be in school. It's not, they don't want to. They can't. And it's very, very distressing. And it's very impactful on the home and on child development, and it's very lonely. [00:04:00] And I just want, you know, if there's someone listening today, who has had a sort of really hellish morning and their child feels unable to go to school and they need to go to work and they're staring down the barrel of cancelling something and they can't get help at school. Um, it'd be amazing to buoy someone up today so that they actually think. Oh yeah, there's loads of us, you know, struggling and I'm not a terrible parent and I'm doing my best and it will make me pull my child closer rather than push them away because I feel so fearful right now.

Nuala McGovern: Well, we want to, yeah, have that community, battle that loneliness, and also have uh, some positivity and buoying people up. We really want those that are going through the send system at the heart of these conversations, and that includes Jason who is joining us. He's a dad of two autistic children. Uh, you've also been recently [00:05:00] diagnosed yourself as autistic, Jason.

You're very welcome. I'm just wondering, when you hear Kellie and Anna talk about why they want to be part of it, what what's coming to your mind?

Jason: It really resonates with me. My, I've sort of been involved in the SEND system with my children for about eight, nine years now. (Nuala McGovern: Wow...) And everything is a struggle. And, you know, Anna's point about children not choosing not to go to school, being unable to, and having that recognized, you know.

It's been a, a constant battle all the way through. I've been to three tribunals, been to judicial review. I've spent maybe 30,000 pounds on (Nuala McGovern: My goodness…) on legal and, and you know, medical advice and things like that. And at every stage it just seems to be that unless you've got a court or a tribunal or a solicitor writing the letter. As a parent, you get [00:06:00] ignored and discounted. So I think it's really important that the system needs to change it. It's taken me close to, to breaking point, you know, I, I did the first tribunal by myself. (Nuala McGovern: Wow...) But then that experience almost broke me, and that's when I had to get lawyers involved and, you know, I'm, I'm really privileged that I've had the resources to be able to do it.

But there are so many other families who don't have the money, don't have the ability to understand how to navigate the system, you know, who have nine to five jobs that don't give them the flexibility to make all the phone calls and, and speak to people. And the whole system is meant to be based about need.

Nuala McGovern: Mm-hmm.

Jason: And it isn't at the moment.

Nuala McGovern: You felt, I think from what you're telling me, that you had to prove yourself to the point of exhaustion on what your children needed and your children were out of school for long periods of time.

Jason: Yeah. So [00:07:00] probably between them three or four years out of education.

Nuala McGovern: And what was that like emotionally for you, for your family?

Jason: It's, um, it's incredibly difficult because you see your children struggling - at one stage. My, my youngest son was coming home from school talking about how he was a peanut brain and that that hurts because you see how unhappy they are and you see their, their potential and the things they could achieve and it, you know, it is so difficult emotionally to, to keep going, to keep fighting.

Nuala McGovern: You mentioned there are a number of tribunals and a judicial review as well. Also the eye watering amount of money that you spent. Do you understand how it got so complex and difficult?

Jason: When you look at the send code practice [00:08:00] it should be quite simple, and it's talking about collaborative working and about the statutory duties of the local authority, but I, I just find that it's, everything is, is a fire and I suspect it's largely down to that financial cost, you know, to, to make provision to make good, provision for needs can be expensive or complicated, and the the longer that it takes to get, to give that provision the less the local authority have to spend in, in making it.

Nuala McGovern: For that child because eventually they will age out of that system. We're not naming the local authority that you were dealing with Jason, but it did tell us that the councils work hard to engage with young people with send and their parents to identify provision that suits each individual situation. Each case is [00:09:00] different and it can often take time and wide discussion to reach a consensus on what is truly in the best interests of the child, but this would always be at the forefront of any decisions taken.

Jason: That, that's not been my experience or the experience I see on forums of local parents.

Nuala McGovern: This podcast is all about you listening at home, catching us wherever you can grab a few spare minutes, and we have been blown away by just how many of you have already contacted us with your stories, your suggestions, and your advice. Do keep your messages coming. You can send them to [email protected]. Include a mobile and let us know if we can use your name. This is all about building a community. Here are some who got in touch. Jessica emailed to say ‘The new Send in a Spotlight podcast genuinely stopped me in my tracks. [00:10:00] The honesty in the trailer reflects what so many families live through every single day often in silence, and so many listeners are excited and grateful that you, Kellie and you Anna, are both on board.’ Tamsin said, ‘The system is turning me into a mad mom randomly emailing for someone to actually listen. I'm really appreciative of Kellie and Anna using their celebrity to bring our fight to people's attention. I just feel so hopeless and outraged that in the 21st century, this is happening under our noses.’

And we also got this from someone who said, ‘I saw the post on Instagram where Anna and Kellie spoke about how exhausted parents of Send children can be. I feel absolutely relieved to hear this.’

Kellie Bright: I, I, I mean, that was me. Absolutely. I, I, and I have met so many people who are so burnt out and exhausted. Um, I have one here. This is from Fiona who says she's six days away from having to quit her 20 year [00:11:00] career so she can support her child. This is the hardest, most lonely and lost time I've ever experienced. I feel like we are surviving day to day at the moment. I don’t know where to turn to for help. Waiting lists and lack of clear support has left us feeling so alone and confused.

Nuala McGovern: You've also read some of the messages coming in, Anna?

Anna Maxwell Martin: Yes. Let me put my glasses on. Uh, there's one here. Uh, this is Lisa. She says ‘There's a hidden epidemic of parents losing their careers, their health and themselves because the send system can't meet their children's needs.’

Um, and another one, conveniently with the same name as me, she's called Anna. ‘I am beyond exhausted. I'm emotionally burnt out, but I keep going. If I don't fight, who else will? Our Send world is broken.’

Nuala McGovern: It's interesting, some of the same words come up again and again as people talk about what it is that they're going through.

Um, I want to bring a little now of 18-year-old Katie. Now, you might have heard her a few times in the send discussions on Women's Hour and the school environment did not [00:12:00] work for her. She hasn't been to school since she was 13, but she is hugely successful in so many other ways, including addressing MPs and winning Young Advocate of the year.

Let's listen to the voice note that she sent us.

Katie: I've been in some really dark places, in positions where I could barely get out of bed and I could barely eat, and my parents were having to do everything for me. But it's taken a few years, but I am now doing a lot better. I've been to the House of Commons, I am… can't go into the studio to record this 'cause I'm going to the House of Lords. I've been doing so much send campaigning, and even if you don't wanna be a send campaigner or you don't wanna do any of this sort of work, it will get better and you will find things that you love and things that you want to do.

Nuala McGovern: Katie, always a marvel and just off to the House of Lords. Thanks so much for sending us in your message. Well, as well as parents and carers and young people, we've also been contacted by many other parts of the Send Jigsaw. Perhaps we could think of it that way. So teachers, Head [00:13:00] Teachers, SENCOs, special educational needs coordinators, uh, in mainstream and also specialist schools and alternative provision.

And there has been local authorities, health professionals, organizations, and I wanna name some of them. The Disabled Children's Partnership, the Special Needs Jungle, Black SEN Mamas. And Let Us Learn Too. There's been charities like Contact, Sense, the Royal National Institute of Blind People, the National Autistic Society and advice organizations, IPSEA, SOS SEN, just to name a few.

So during the upcoming episodes, we will be looking at SEND from all angles.

So what is behind the crisis in SEND? Well, we wanted to get under the hood of what's been going on and here now to help with that is Kate McGough, BBC Education Reporter. This is your special subject, isn't it, Kate?

Kate McGough: Hi. Yes it is. Thank you. It's something that I've been following quite closely since I joined the education team at [00:14:00] BBC News about five years ago.

Um, that produced a documentary for iPlayer a couple of years ago that looked at the overcrowding in special schools in particular, and we followed a few families through, through that tribunal journey and, and like you guys, I'm following all those twists and turns in the run up to reforms when we get them next year.

Nuala McGovern: So where shall we start?

Kate McGough: I think a good place to start is probably about a decade ago, 2014. Um, that was the last time that we had a major piece of legislation about send in the Children and Families Act and, and there's some familiar calls back then about the system not working for families. Um, the idea of those reforms in 2014 was that you'd have a simpler, much more joined up support between education, health, and social care. And it would introduce education, health, and care plans, which replaced something called SEN statements, which were a lot more education focused. Um, and it also introduced a lot more parental choice on the type of education setting. And crucially, it also expanded support for young people up to the age [00:15:00] of 25. Previously, you know, a lot of the support would drop off a cliff when people reached adulthood. And also it, it asked your local authorities to spell out their local offer for the first time, outlining what send support should be available. So that was obviously that was what introduced the system that we have now.

Nuala McGovern: But we do hear about this system being called a broken system, but does everyone agree that it’s broken?

Kate McGough: Yeah, essentially. That's right. So many reports in recent years where the same words keep coming up, like broken unsustainable... Just in the last year or so, we've had the National Audit Office. That said, the send system's broken and crucially not delivering better outcomes for send children, despite huge increases in funding over that last decade.

And the government itself has said they've inherited a send system that's on its knees. Um, we've got MPs - the Education Select Committee said we need root and branch reform. Councils warn of drastically rising costs and, and warning of bankruptcy, actually. And we've got teachers as well who are worried about the pressures on [00:16:00] schools and, and of course, parents facing long supports and being in the system and, and having to fight their way through it.

Nuala McGovern: Who we’rehearing from today, of course, and that is a, a very long list that you outline Kate, but why is it?

Kate McGough: So a lot of it is down to rising needs. We've got about 1.7 million pupils in England who get some kind of support for special needs at the moment. That's about one in five, and we've got massively rising numbers of education, health, and care plans within that. Those numbers have doubled in a decade now. It's about 5% of all pupils get that higher level of support and we don't fully know why. Um, I think you could partly put it down to increasing diagnosis of, of things like autism. That's the most common reason for an EHCP. You you've got better recognition, um, of symptoms, especially in girls around that.

You've also got, you know, rises in speech and language needs a lot more social, emotional, mental health needs. Those are the, the next two most common reasons for an EHCP, but it leads to patchy support and really long waits for families. So you've got [00:17:00] huge regional differences between local authorities and what families are getting a real postcode lottery.

Um, especially around things like how long it takes to get an EHCP, I think on average, only about half of the EHCPs are processed within the 20 weeks that they're supposed to, but it varies hugely. Um, and you've got really long waiting times for assessments. I think the average wait time for an autism assessment, 16 months, it's meant to be about 13 weeks.

Uh, and that leads to huge rises in costs for councils. So you've got EHCPs increasing, you've got more demand for special school places that can be really expensive, especially the independent ones, SEND transport costs going up. So essentially at the budget, the Office for Budget Responsibility predicted a 13% rising costs for SEND this year alone.

And they were warning that with without any changes, there could be about 14 billion pounds of overspend built up by 2028, just within councils that would need to be dealt with.

Nuala McGovern: And those figures, uh, we're talking about England, other nations do have their own versions of the system because [00:18:00] education is devolved, uh, the Schools White paper. Many people expecting that. They talk about reforming the whole system. And I will be speaking to the Minister about that shortly. But it does feel like this is a good time to be talking about the changes, potential changes on our new podcast. And it's a real moment in the SEND Story, many people feel.

Kate McGough: It really, really is, and I think you've got all the immediate questions around funding that got raised up in the budget just last week.

You know, how is the government going to plug this massive gap in send funding that's being built up by councils. We know that, you know, central government's gonna take over the funding from councils. We don't know exactly how, where in the budget that's gonna come from. And we also, people really wanna know, are we gonna see fundamental reform that so many people are calling for or something a bit more incremental?

You've got political considerations. The Prime Minister has said that send is the topic that he gets contacted the most on, and he really wants to avoid a backlash similar to that, that we saw on welfare reform.

And [00:19:00] most importantly thousands of families waiting to hear how it will affect them, you know, especially those that are already in the system. Any positive change could take a few years and obviously you get one childhood and there are plenty of children in the system right now who aren't getting the support they need.

Nuala McGovern: Thanks Kate. On the line now is Georgia Gould. She is School Standards Minister. You're very welcome. Um, I'm understanding that you are at a listening session announced by the government.

Georgia Gould: Yes, so, uh, brilliant to, to be speaking to you and really excited about the podcast. I think it's, it's so important to have this space where you are having discussions about the needs of, of children with special educational needs and disabilities and their parents. And, you know, I hear from so many parents who want to feel that sense of community.

So it's great that this is here and I am in at Skegness this morning. One of the regional events we're holding as part of a national conversation on the future of special educational needs and I've heard from families around the country that they [00:20:00] don't feel that their voices have been heard. You know, so many stories of, uh, I was listening to a little bit before, similar stories where children are desperate to be in school but have found there's not a school that meets their needs.

Parents who felt like they've had to battle the system and we really want to make sure that their voices, the voices of young people, the voices of parents, but also the voices of teachers, SENCO’s, those who are trying to support them. Are at the heart of, of shaping the, the future of, of the SEND system. And we're having lots of completely open access online events where people can ask questions.

Um, last one, last night. So, uh, really an invitation for, for, for people to, to share their experiences. Ahead of launching the white paper, when there will be a full formal consultation.

Nuala McGovern: Well, well, let's talk about that because you're all already deep into it. It sounds, yes. Thinking about the specific changes, and a question that many of our listeners will want to know is, are EHCPs going to go? Will they be eliminated?

Georgia Gould: So this is one of the worries about the future of EHCPs is [00:21:00] something that comes up a huge amount from, from families, people saying that they've had to, to fight for, for support and worried about that going, but also talk about some of the, the frustrations that even when they do have an EHCP support isn't available.

You know, we said that there will always be a legal right for additional support with education. We're working through what that looks like. But I think the fear, right, I hear is that the parents are really scared of being left powerless to get this support for children, and we are determined that that doesn't happen.

Nuala McGovern: But can you confirm that EHCPs will continue?

Georgia Gould: We're gonna set out our full plans in the school's white paper. So I'm not, I can't go into that, you know, we're not ready to go into that level of detail because these are still things that we are looking at exactly what the ongoing, uh, uh, legal support will look like. So it's, it's a conversation that we're continuing to have.

Nuala McGovern: Yeah. And you mentioned the white paper. This is something that is so eagerly anticipated. Can you tell us when that will be released?

Georgia Gould: [00:22:00] So we said early in the new year, I know it's frustrating that we haven't, that we can't share everything at this point, but we want to make sure that we get it out as quickly as possible, but, but also that we get it right because this is a, you know, this is our chance to, to change the system for, for families.

So, I mean, so we'll we're working to do that as quickly as possible, but uh, yeah, it will be, it'll be early in the new year.

Nuala McGovern: Early in the new year. I mean, I would think of that as January. Is that a fair conclusion?

Georgia Gould: It'll be as early as possible in the new year. I, I, I would love to be able to give you a specific date, but we want to make sure that we're getting it right. Um, and, you know, when we're really clear that we're, that we've got the best possible proposals to, to set out, then we'll set them out.

Nuala McGovern: Is inclusion in mainstream schools part of the answer according to you?

Georgia Gould: Very much so. I've seen as I've gone around the country, some really brilliant examples of inclusion.

Um, I was at school recently where a [00:23:00] mum said that, you know, it's the first time she'd felt in, in years that she didn't have to fight. Her child's needs were just being met and he was thriving, but she had had to move halfway around the country to get that provision. And every school should be supported to be an inclusive school that it's happening in, in some places for extraordinary leadership but often the system isn't always set up to deliver that. It requires, I think, a, a, you know, real partnership between health councils schools to make sure that, that every school is an inclusive school. And when I speak to teachers. They want to deliver an inclusive education. That's why they've got into teaching, but they don't always feel like they have the, the training and support. And those are some of the changes we want to make. But I think one thing I is really important, I make clear, is that inclusion is a big part of it and we want inclusive mainstream schools, but we still believe in specialist provision. Some children will need specialist provision. There's extraordinary specialist provision in the system and we want all of those specialists and mainstream schools to work together to make sure that there is [00:24:00] support for, for every child, whatever their needs are,

Nuala McGovern: The budget. Of course, Rachel Reeves, the Chancellor, announced that SEND spending is transferring from local authorities to central government. Do you think that will solve what we were calling one of the thorniest issues, the financial aspect of SEND?

Georgia Gould: I mean, I think we are, we are already investing in SEND, we've put a billion pounds into the high needs budget this year and 740 million into creating specialist places. And we will continue to invest in special educational needs. And as Rachel made clear in, in the budget from 2028 when the statutory override ends, then the responsibility for funding SEND will sit across the whole government. One of the things that people have worried about is how the OBR kind of presented some of that was they, um, looked at a hypothetical situation against the school's budget, which has created some worry. And I think it's really important to, to set out that this any need for additional funding will come from the whole [00:25:00] government spending and not particularly from the school's budget.

Nuala McGovern: You know, we've touched on some of the issues. You've come back consistently talking about the sheer complexity of what is ahead of you? Are you daunted by it?

Georgia Gould: No, I think I feel a huge, huge sense of responsibility. As I said, you know, some of the stories I've heard haunt me forever. The way that some children have been failed by the system, the stress that families have had to, to go through and we have to change things for them. So I just feel like such a really strong sense of purpose to get this right and to work with people. But you know, this is not something the government can do alone. And that's why we're opening up the, the conversation. You know, there are people in every corner of a country who are just determined to support children better.

Nuala McGovern: Um, as you speak about this though, minister, you've obviously heard from people up and down the country. What do you say to those parents with children that are out of school that are suffering right [00:26:00] now and feel that they have waited already way too long? And at the moment all we have is a vague timeline of when they might see some concrete proposals.

Georgia Gould: So we haven't waited to, to start to change things. So some of the things I already mentioned, the 740 million, I've already seen that in the system. You know, new, um, resource spaces being attached to schools, investment into creating those new specialist places. And the government announced that our best start in life hubs, which are there to support early years around the country that each of them will have a specialist SEND leads who will be there to, to support families.

Um, we're working with the NHS on a program to, to support schools around neurodiversity and the best practice. We're, we're sharing what's working well and we're investing in what's working well, so...

Of course we're not seeing that yet in every school, but there is change happening already and you know, I totally understand the [00:27:00] urgency, but you know, people have really suffered when we don't get it right. And so it's, for me, it's really, really important that we have the voices of, of young people, of parents at the heart of, of what we do to make sure that we're building a system that works for them.

Nuala McGovern: Schools Standards Minister Georgia Gould on the line from Skegness. Thank you so much for joining us.

Georgia Gould: Lovely to talk.

Nuala McGovern: Well, let me throw it over to Jason. What did you think?

Jason: I thought it was a lot of, of the same things that…the system at the moment makes clear that provision should be according to need. Um, it is, it's not working like that.

And absolutely it's important that mainstream schools are made more inclusive and I think there is huge scope for better support for, for young people within mainstream. Um, it was good to see the acknowledgement or hear the acknowledgement that there, there is a space for specialist provision. Because [00:28:00] I've worked with particularly one of my son's schools, you know, they were brilliant. They bent over backwards to try and accommodate him, but they couldn't meet needs. (Nuala McGovern: Mm. Um.) And you know, there are going to be children, young people who need that specialist support, that different environment. So I, I thought that the minister said all the right things, but it's all the right things that have been said for years.

Kellie Bright: Kellie, oh, um, so much to say. A, a, a few things struck me, one, that there was no straight response to are EHCPs going to stick around or not. Um, and I, as a, a parent of a child with an EHCP find that incredibly frustrating. And also it does fill me with a kind of trepidation that they are going to go and that something will replace them.

I also, uh. I know that there's a lot of talk and I think it's very good around early intervention, but [00:29:00] something that I have encountered myself and also I've met lots of families in a similar situation where support is often given in quite a comprehensive way at primary school age. (Nuala McGovern: Mm-hmm. Um.) Because primary schools tend to be smaller, there are often TAs available anyway. It's a more, a softer, more friendly environment and it seems to be more nurturing as a whole. But what happens is that then they are, you know, if they're in mainstream with support at primary school and they don't have an EHCP when they go to secondary school, everything drops off a cliff so hard. Everything drops off a cliff.

(Anna: Yeah, it does.) And they're suddenly in this enormous, enormous school, usually my son's school. It's absolutely huge and I, I also think that yes, early intervention without having to have a diagnosis is brilliant. But sometimes things don't show up until they're a bit [00:30:00] older, until things get harder at school, until hormones change.

Nuala McGovern: So what fits for the younger child might not necessarily fit for the teenager?

Anna Maxwell Martin: No. That's why we need to meet at the point of need at at at any time. And that's why, especially in big secondary schools, you can't gatekeep. Pastoral care. Some children are allowed to access SEN in secondary school. Very, very few. That stat - One in five - It's much higher. Also, all this stuff, SEN, EHCPs and, and everything, so many other children fall through the cracks, which is why we need to. Stop stigmatizing children and meet their need. They want to co contribute and they want to thrive. So in all these discussions, what we don't talk about is young carers, uh, bereaved children like mine, um, who also have then other complex sets of needs. So we've got to think about all children holistically.

Nuala McGovern: From all the emails and messages that we've been getting from you, we know life can be lonely and [00:31:00] tough, but there is also hope. Every week we're gonna put in the spotlight someone fabulous who has done something that was perhaps previously unimaginable or that just needs celebrating and needs national spotlighting.

So this week we're going to hear from the kindest boy in Burnley. That's Henry who is autistic with his mom, Emma.

Henry: Hello, my name's Henry. I'm nine years old and, and I'm from Burnley.

Henry's mother Emma: Hello. My name's Emma and I'm Henry's mom. Last year, suddenly we lost my mom and one evening, Henry and I were, we, we were talking and, and I was saying to him, what can I do to make it better for you? What would you like to do in these holidays to make it better? And Henry asked if he could have an ice cream parlour. So I said, if that's gonna make you feel happier, then yeah, of course you can.

Henry: My grandma always used to [00:32:00] like ice cream.

Henry's mother Emma: What were grandma's favourite ice cream?

Henry: Mint choc chip.

Henry's mother Emma:  And what's yours?

Henry: Mint choc chip. Yeah.

Henry's mother Emma:  You were snap, weren't you?

Henry: Yeah.

Henry's mother Emma:  I only thought that we'd be making ice creams for family, but when we woke up in the morning, Henry had lots of signs all done, and he had the prices already of what he was selling his ice creams for and his menu ready.

Henry: I set it up in my back garden

Henry's mother Emma: Signs…

Henry: I put some signs with some hours. That's where I put my menus on the gate.

Henry's mother Emma:  And then people came…

Henry: And then people came to the gate. We had raspberry ripple, we had chocolate. We had mint choc chip.

Henry's mother Emma:  Cones. And what did you put on top?

Henry: Flakes, chocolate chocolates with all round things. Some sauce, some sprinkles as well.

Henry's mother Emma: What did you enjoy most about talking [00:33:00] to them?

Henry: Meeting different people from the village.

Henry's mother Emma: And how much did you charge everyone for these ice creams?

Henry: One pound.

Henry's mother Emma: and then tell them how much money you raised? We did a big count up.

Henry: Yeah, we made 325 pounds.

Henry's mother Emma: We did. And then we went to the hospice and we handed the money in. And then in October, Henry decided to say, mummy, can I raise some more money? So go on Henry tell 'em what we decided to do

Henry: We made hot chocolate cones with Rudolf. We spent a full day making them. I put tinsel and a Christmas tablecloth over and I've also er… I also, I also, uh, weared a Christmas jumper and I had a Burnley Christmas hat on.

Henry's mother Emma: Who's your favourite team?

Henry: Burnley.

Henry: Yeah, and my favourite player is Hannibal and Kyle Walker [00:34:00]

Henry's mother Emma: And then tell everybody, how much money did you make the second time round?

Henry: 305 pounds.

Henry's mother Emma: Yeah. So do you know how much money that is altogether?

Henry: 630 pound

Henry's mother Emma: How does it make you feel raising money in memory of your grandma and telling everybody?

Henry: Really happy.

Henry's mother Emma: Really happy, and I'm super, super proud. Yes, and I hope that anybody listening to this podcast that you all see what these children are capable of and they're amazing. They're amazing human beings. Thank you for listening to us. Okay. Say bye.

Henry: Bye – have a nice Christmas!

Nuala McGovern: That is Henry and his mum, Emma. I'm with Henry on the mint choc chip. It's the only ice cream to eat. Isn't he wonderful?

Kellie Bright: Yeah. Oh, I, I just gorgeous. Just gorgeous. And actually what Emma [00:35:00] said at the end, you know, I would love to go as far as saying, I would like the whole terminology around special educational needs to change. I would just like it to be ‘different’ educational needs. They just have different

Anna Maxwell Martin: I, yeah, I feel the same. Different. We've talked about this, but individual needs. Yeah. Or something, but something that says we all have value. You know, it's not even about inclusion. We just all have value. And you know…

Kellie Bright: Yes, everyone has value in their own way and, and actually as parents. This is one of the things for me that I feel is the fight is that as parents, we champion our children to be who they are.

You are you. No one else in the world is like you, and that is wonderful. And yet they're in this system, which is trying to put them all in a box. Just doesn't work. It just doesn't work.

Nuala McGovern: Well, some people that are breaking out of the box. And I want to ask really our listeners, if you know someone perhaps like Henry that you think we should put a spotlight on or someone who's made [00:36:00] life better for your child with SEND, please email us - it's [email protected]. I can't wait to hear your suggestions. Um, I do want to let you know in the next episode we're going to be looking at EHCPs and the best ways to approach them, but I want to thank Kellie and Anna and Jason for kicking off our conversation this week on the podcast. Until next time.

Goodbye from all of us.

Kellie Bright: Goodbye.

Jason: Bye.

Anna Maxwell Martin: Oh, bye-bye.