Wild Card - Whose Shoes?

13. Yvonne Newbold MBE - founder of Newbold Hope

December 05, 2021 Gill Phillips @WhoseShoes
Wild Card - Whose Shoes?
13. Yvonne Newbold MBE - founder of Newbold Hope
Show Notes Transcript Chapter Markers

Today, I'm talking to my good friend Yvonne Newbold, MBE, founder of Newbold Hope. Smashing taboos and giving hope to families, reducing anxiety-led difficult and dangerous behaviours in children and young people with additional needs and disabilities.

 Lemon lightbulbs 🍋💡🍋
Please see the chapter headings! Struggling with the word count this week and we prioritised sharing links:

 Yvonne’s Xmas Special
An online training webinar, full of tips, tricks and strategies that can keep things much calmer and happier for the whole family over Xmas 

Newbold Hope – Support Group for Families - Our private Facebook Group For families of SEND children with Violent and Challenging Behaviour (VCB) 

Newbold Hope – Community of Practice - Our private Facebook Group for staff who work with this group of children and their families 

Newbold Hope – Distressed Behaviour Information and Support -  Our public Facebook Page sharing information related to difficult and dangerous behaviours in children with additional needs and disabilities.  https://www.facebook.com/TheSENDVCBProject/

Newbold Hope public Facebook Page sharing more general disability information https://www.facebook.com/thespecialparentshandbook/

Follow us on Twitter - @NewboldHopeVCB ; Instagram - @newbold.hope

Further info about how to reduce violent, difficult or dangerous behaviour in children with disabilities and additional needs – 

 Resource page of Yvonne's website, with articles and videos to support families and professionals of children with additional needs who also have extreme behaviour

Start with Basics or Top 10 Videos 

Links to the research studies into the prevalence of violent and challenging behaviour 

Physical aggression in children and adolescents with autism spectrum disorders.

Facebook Community Accelerator Programme – UK Cohort
Yvonne!

Jo Capel, Solo Female Vanlife UK

Iolo Edwards, High Fashion Talk 

Victoria Marie, Get Your Belly Out 

Jaidee, Black Owned Economy 

Neil Thompson, The Delegate Wranglers

Kelly Pickard-Smith, Women in Academia Support Group

Louise Davies, Food Teacher’s Centre UK 

Nafisa Rahimi, Muslim Mamas

Claire Belkind, Family Lowdown

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I tweet as @WhoseShoes and @WildCardWS and am on Instagram as @WildCardWS.

Please recommend 'Wild Card - Whose Shoes' to others who enjoy hearing passionate people talk about their experiences of improving health care.

SPEAKERS

Gill Phillips, Yvonne Newbold

 Gill Phillips  00:11  
My name is Gill and I'm the creator of Whose Shoes, a popular approach to coproduction. I was named as an HSG 100 Wild Card, and one to help give a voice to others talking about their ideas and experiences. I'll be chatting with people from all sorts of different perspectives, walking in their shoes. If you are interested in the future of healthcare, and like to hear what other people think, or perhaps even contribute at some point, Whose Shoes Wild Card is for you. 
So who am  I talking to today? It is my enormous pleasure to be talking to my good friend Yvonne Newbold, who very deservedly was awarded an MBE in the Honours list this year. Yvonne and I were both named in the HSJ, top 50 inspirational women back in 2014. We gravitated towards each other, as we were not the usual suspects, we were each doing something a bit different. And we've been good friends since, getting up to various adventures together over the years. I've been in awe of Yvonne. She's the founder of Newbold Hope. And I can't think of a better gift in this life than giving people hope. I won't spoil the story, as Yvonne will tell it herself. But my goodness, what an inspirational woman she is. So, welcome, Yvonne. I'm so thrilled to have you on the podcast series. You are a Wild Card indeed.

 Yvonne Newbold  01:40  
Thank you, Gill, what a lovely introduction. That's so kind of you. Thank you. And I hope you know that I value our friendship every bit as much as you do. It's been wonderful to watch all the work that you've been doing over the last seven years. Can you imagine it , seven years since 2014. Goodness, wherever does the time go? 

 Gill Phillips  02:01  
I think we probably knew each other a bit before that. Yes. You know, that was The first time we were thrown together in a room together.

 Yvonne Newbold  02:06  
Absolutely, and meeting in person is, as we all know, after the pandemic, that is even more important isn,t it than  just being connected online. So I think both you and I Gill, have a very rich life online as well. You on Twitter, me a little bit on Twitter, but mostly on Facebook. It's absolutely amazing how you can really get to know people. And you can really have meaningful relationships online with people you've never met. And I think that that has come into its own over the pandemic..

 Gill Phillips  02:50  
Well, I think seeing what you've done Yvonne over the pandemic, and the number of live sessions that you've run … and not having to run around all over the country … So take a step back. Tell us a little bit more because some people will know you well and will be Wow, it's Yvonne Newbold can't wait to hear what she’s got to say, some people won't. So tell us a little bit more about yourself and what's important to you.

 Yvonne Newbold  03:11  
All right, of course, yes. So I am fundamentally a mum, I have come into the work that I do entirely from a lived experience perspective. I have three children, they're all now grown ups. I've got Francesca, Toby and Adam. Toby was born with a condition that is so rare, he is still the only person in the world they've identified with that particular condition. And that meant that being his mother, particularly when he was so small, was a very, very lonely place to be. There were no support groups. There were no research teams trying to find out what had caused it or to try and find a cure. There were no consultants who devoted their careers to specializing in what Toby had. By default, I had to become his medical expert because every time he was desperately ill, and we were rushed to hospital. It was a completely new team who had never ever come across the particular group of symptoms that he had as part of his syndrome. Now, Toby was desperately ill for the first six, seven years of his life. It was made incredibly clear by his medical team that he really wasn't expected to survive very long. We were initially prepared that we'd probably lose him before his first Christmas, then we wouldn't make it to his first birthday. Then we were almost discouraged from looking for a school place because they didn't want us to be disappointed. They didn't think he'd last that long. And against all the odds, he's now 27 which is just …  I am so inordinately proud of him. But during those early years, he was so desperately ill, that most of those six, seven years, I calculated about three quarters of his first six or seven years, he and I spent together in hospitals, with him fighting for his life, and me as a resident parent, willing him to take the next breath. We got to the point whereby we nearly lost him more times than I can remember, you know, the number of times, I had called the extended family and got everybody to the bedside. And each time Toby had other ideas and just sort of rallied around and come, back to us. Now, Toby, now he's 27. He lives in an absolutely fantastic care home exactly a mile from our house. So he's very, very close. He's still very much the heart and soul of our family. And he operates intellectually at an equivalent level to say a mainstream 18 month or two year old. So that means that he is really into slapstick. He adores things like Mr. Tumble, he loves Hide and Seek, pin the tail on the donkey, silly songs, action songs, all of those sorts of things. He is hilariously funny. And he's also probably the most persuasive, stubborn, bossiest person I know in the world, even though he's completely non verbal. Now, one of his school teachers once described to me, she said, Yvonne, No, he's not stubborn, what was it she said, she said, he is a highly skilled self advocate. And I think that is a beautiful way of describing Toby. He's also the best pickpocket I've ever met. Because he will have your mobile phone, sniff out mobile phones, he will have it off you because in case YouTube has Mr. Tumble or Tweedy episodes that he hasn't seen before. However, it hasn't always been this rosy and this easy. As his health began to stabilise a little bit. And as he was able to spend more time at home, his behavior went off the scale. When I say it went off the scale, he became very violent, very aggressive, very destructive. We had 10 years of days where I wouldn't know how I would get all three children to bedtime safely. And sometimes I didn't. The only way I could describe those years was sheer terror. And what happens is, I asked them, Toby had a wonderful team, some fantastic people, you know, of course, education, health and social services. A child like Toby needs a huge team to keep things going. And he was so complex. I asked everybody on that team, what can we do? And remember, this behavior started way before the internet, you know, before the Facebook groups or anything like that the only source of information for this sort of thing was from professionals. So I asked everybody, and it drew a blank, no one I talked to, could believe it. Nobody I talked to could understand that the smiley, happy Toby they saw also had this side to his character. Nobody had ever come across anything like it. And there were no services to refer us to. And I was left feeling that I was the only parent in the world who was dealing with this, that it was incredibly rare. I now know that it isn't, but that's how I felt then. And slowly but surely, when you have a child who is behaving in very difficult and dangerous ways, almost always the narrative changes. And it becomes mum’s fault. And the years of blame, shame, judgment, being told that it was my fault, being told by so many other  people that basically I should do this. I should do that. I should do the other. I was being too soft. I was being too lazy. I wasn't standing up to Toby. Nobody ever told me that this behavior was caused because of anxiety. That information,  it sounds ridiculous now, but there was no way I could find that out. I was told that I had to basically parent him incredibly strictly, I was told by loads of people to parent, stricter, harsher, more authoritatively, and I was going up and up and up and up. And all that was happening was he was getting worse and worse and worse and worse. And of course, now I realize that this behavior was due to anxiety. Now anxiety is a funny word. What does it mean? Well, basically, normally, it means that somebody feels incredibly unsafe, they feel terribly frightened. He was confused, he was distressed. He was  … he can't talk, the only way he could communicate to read how unhappy he was, was through his behavior. And I was reading it all all wrong. And as soon as I realized that this behavior wasn't about him being naughty, or nasty, or anything like that, it was a frightened, scared little boy, inside. Then, I altered the way I parented and I, basically, instead of going up and up and up, we're getting harder and stricter and firmer, I went down and down and down and became kinder and more collaborative, and more gentle and more responsive. And the only way I can describe what happened was … it was like magic. We were at the point where by on Toby's 18th birthday, we got to the point whereby for the first time, he was so happy he was so content, he was so he was just comfortable in his own skin. And he was such wonderful company to be with that we were able to have a party in a church hall for 200 people.

 Gill Phillips  11:54  
Wow. 

Yvonne Newbold  11:54  
And the thing is six months beforehand, and it was only six months beforehand he was 17 and a half, we hadn't been able to go out into the community, unless we'd have three adults to keep him and everybody safe. That is how quickly things changed. So the other thing about those years is that when a parent is consistently blamed and judged, something awful happens, that parent starts to absorb it, I've never seen it 1000 times since in my own work, parents absorb it, they start to believe it. And when a parent starts to believe that it's all their fault that their child has been violent, it's a very, very small step then for that parent to start believing that they actually deserve the bruises and the injuries and the black eyes. Because after all, it's all their own fault. And  what I'd like to say, part of the work I now do, is to try and reduce the sort of institutional blame where it's just so easy to blame a parent rather than actually keep asking the what's and the whys. So anyway, we got to his 18th birthday. And that day was I was walking on air, it felt that everything comes together. We've been through so much with nearly losing him all those awful years, when he was so desperately in that hospital that then  all those years with terribly difficult behavior. And now I realized that all behavior is a form of communication. Things were really good at that party, he was going around hugging people. It was like birthdays Christmases all together. It was like winning the lottery, and the marathon all on the same day. And I was walking on air and I just felt right. Okay, we've got there. We've arrived, our family. Great, wonderful. That was on the Saturday. And we were still euphoric, all the way through until the first Thursday. When completely out of the blue literally five days later, I was diagnosed with bilateral breast cancer.

 Gill Phillips  14:10  
My goodness, was that the timing Yvonne, I didn't realize that

 Yvonne Newbold  14:13 
 Yes, it was the same week. It was like the universe was thinking, right. Okay. They're happy we better do something about that. It actually felt. I can laugh about that now butthat's how it felt .. , but basically bilateral breast cancer. I had two completely separate, completely different types of cancer, one on each side that were completely unrelated. I basically caught cancer twice, just at the same time, just very, very bad luck. So I had to have chemotherapy, radiotherapy, lots of quite radical surgery, including mastectomy, and, you know , things weren't great for 8-9 months throughout all of this. But we got to the end of the treatment and Malcolm, my other half and I, we booked a restaurant for the evening that we were going to go to the hospital to get the good news that we got through the end of treatment and that everything was okay. Except that didn't happen. There was a different narrative in the room, I knew there was something wrong, because the head of the team, the professor was actually in the room. And I'd never met her before. And she basically told me, the bottom line, the treatment hadn't worked, they've now discovered that my cancer had progressed into my bones, and that the goalposts completely changed, and that my cancer was no longer curable. Because of Toby, I needed to know the bottom line, I needed to know, you know, how long have I got. And because I knew that I was going to have to make some pretty tough decisions about Toby. And they told me that if I was really lucky, and if I stayed on treatment, I might have as long as two years. But I was likely only to have a few months. Well, that day, on the way home, we live quite close to the Royal Marsdon and Sutton. So it's less than a 10 minute drive all the way home. As you can imagine, Malcolm and I were both quite quiet, quite subdued, looked lots to think about. And by the time I got home, I knew what my bucket list was going to be. And there was only one bucket list that meant anything to me. And the only thing I wanted to do was to do whatever I could to make the quality of the next generation of children and their families coming up after us. Toby was now at the next generation, what could I do to improve the quality of lives. And that's basically what I've been doing ever since. Except that they weren't quite correct in the two year prognosis because I'm still here nine and a half years later,

Gill Phillips  17:12  
Yay, hooray!

Yvonne Newbold  17:12  
 I spent the day at the hospital yesterday, having intravenous infusions, I'm still havehaving loads of tablets, my mobility is sort of shot to pieces, I now use a mobility scooter, but I'm still alive. And I'm still absolutely loving it, you know. So anyway…

 Gill Phillips  17:31   
You are still rocking it Yvonne.

 Yvonne Newbold  17:36  
So I think I must take after Toby, because you know, he was supposed to die. And he didn't and the same with me, so you know, I'm not complaining. But since then, I've done all sorts of things. But the the work that I think I'm most proud of, is the work I've done to support families who had exactly the same situation that we were in, where they have a child who has a disability or an additional need. And that child due to anxiety is incredibly difficult and dangerous and their behavior …

Gill Phillips  18:14 
 If  I can just say, I've been watching that journey in awe because honestly, the scale of that in terms of I know we've talked about the starfish story. And if you could help one family, well, that's true, to a large extent, of lots of different things, but to help one family to that extent that you're literally turning round the family from being scared, and you know, with very good reason with violence and so on, to actually having a happy family where people enjoy their lives. And if you could do that, for one family, that would be amazing. So the work that you've done, Yvonne, where you've done that for so many families. So tell us more about that.

  Yvonne Newbold 18:52  
Okay, thank you. It's been a long journey. And of course, in the early days, when I was sort of trying to do something, the first thing I did was I wrote a book, the Special Parents Handbook. And because that was so successful, I started to be asked to speak at conferences. And, you know, here was I supposed to be doing something really sensible, like taking up knitting and waiting to be put my house in order. And suddenly we're getting these wonderful invitations to go up to Manchester or Leeds or Glasgow or Bristol or the Isle of Wight just to you know, speak on a huge stage to all these people. And then after I've spoken people will come up and say, Look, do you do any training and I didn't then but I soon put training together. And it also just snowballed. It was just incredible. But interestingly, I never really spoke about Toby's behavior. But do you know why? Because I was ashamed. Because I'd been blamed so much, because I didn't want to have to deal with all that. sort of judgment again.

 Gill Phillips  20:02  
It's a taboo subject. What goes on behind closed doors?

 Yvonne Newbold  20:06  
Yeah, absolutely. Anyway, I was then invited to take part in a BBC Radio 4 woman's hour broadcast. And I was so excited. I mean, going on woman's hour. That was a bit like, you know, my other half Malcolm being given a call by Gary Lineker saying look, I can’t make match of the day, could you present for me instead, it was that sort of, it was like a wow, it was like, Whoo, I'm on woman’s hour. And I was like a little kid, I was really, really excited. But they were basically, Jane Garvey is an incredibly talented broadcaster. And she takes us into the studio, the studio, the lights are off, we were encouraged to kick our shoes off and totally relax. And she asked me a question and I had no option but to answer it authentically. and honestly,

 Gill Phillips  21:05  
Is that how it happened?

 Yvonne Newbold  21:06  Yeah, that was the day that it happened. And basically, I found myself talking for the first time openly about Toby's behavior. But in front of 1000s and 1000s of people. Well, we came off air. We were walking back to the car, I turned my phone on. And my phone just kept going ping, ping ping. And, to be honest, I thought it was going to be my dad, because my dad and Toby are each other's favorite people in the whole wide world. I thought my dad was going to be upset that I'd told the truth about Toby, I thought it was going to be you know, yeah, I didn't look at it first. But it was just pinging and pinging. So we got back in the car. And I finally was brave enough and looked at it. And I must have had 40, 50, 60 messages across social media from total strangers. And I started opening them, people saying thank you, and sharing their stories. By the end of that day, I'd had well over 100 By the end of the week, I'd had 300. And they haven't stopped coming since that was four and a half years ago. And that day I knew I had to do something. And I had never really pulled together an event. But I was just I was in shock that we weren't the only ones I was in shock. There's so many people and some of the stories that were sent to me were so harrowing. That I thought, right, okay, we need to bring these people together, we need to listen to their voices, we need to find a way of doing this better. So at the time, you know, I was I was already doing quite a bit of work with NHS England. So I talked to some of the people there. And they said to me, Yvonne,  you've got to do this, we can't. And I didn't understand that then, but I can now see it. Basically, some things have to be parent led and community led. And it was for me to sort of bring people together. So that afternoon, I did something really stupid. I announced on Facebook that we were going to have a conference in 4 weeks time. I didn't know anything about conferences have never planned one never organized one. I've been to a few but hadn't actually organized it. I didn't know you needed a team. I didn't know you needed a heck of a lot longer than four weeks.

Gill Phillips  23:34   
Four weeks is a crazy short time, Yvonne.

 Yvonne Newbold  23:38  
Yeah, I mean, the expenses of the conference, basically what I was doing was …  if nobody bought any tickets, and we hadn't have had any sponsorship, we probably would have lost our house or something. I mean, it was crazy. But I just felt that no, we've got to do something. And Gill. I will never ever forget your support and your kindness. Because you helped out financially. You just got in touch and you just said, I'm right behind you. And you were just you know, you helped to make everything that's happened since happen. And I'll never forget that. So huge, huge thank you to you, but …

 Gill Phillips  24:17
Well, I just thought. We were friends by then, I'd followed your story. And I had no idea … you told me, you know, some of these stories. And I had no idea of this whole world really, of having…  you know , I've brought up three children, I think bringing up children's is an eye opener always

 Yvonne Newbold  24:34  
Yeah, absolutely

 Gill Phillips  24:36  
Within normal, you know, parameters, really. And I just couldn't imagine what you've been through as a family. And I could see the way that you could help others. What we've already said perhaps about the starfish just if I could help you to help one or two families like that. And I think neither of us had a clue what kind of scale this was going to reach and what's happened since

 Yvonne Newbold  24:58  
I think I'd have taken up knitting that day if I’d had a clue what was going to happen..   But your generosity and your belief in me, I can never ever thank you enough. But anyway, so we went ahead, we had the conference, the tickets sold out in about a day. So basically this conference, I mean, looking back, it was bonkers. But we went ahead with it anyway. And we had 4 weeks notice the tickets sold out in about 24 hours. We got some amazing speakers, the speakers, we had people contacting me saying, I'd love to speak at, it just somehow generated so much interest that we brought everybody together, we had over 120 people. And the stories that we learned that day, they were enough just to break your heart, families who were so struggling. And there was this moment when I said, I just stood up, I was talking and I said, please put your hand up. If you've ever been hurt by your child. Every single hand in the room went up apart from the speakers. And I got everybody to stand up and turn around. And suddenly, they all realized that they weren't the only ones. The whole thing. People were hugging people were crying, it was electric. Anyway, at the end of the day, I realized that something important had happened that day. And I said something else that sometimes  since I‘ve thought no, that was bonkers. I said, Should we stay in touch somehow? How about I start a Facebook group this evening. And they will went …  Yes!,  Now I thought the Facebook group was just going to be the people that had been in the room that day. But no, what I've since found out is that children and adults who have got some sort of disability or additional need, have about a 50% chance of having at least some aggressive episodes, again, due to anxiety, it's the fight or flight, they have no control. These aren't behaviors that they're choosing. These are behaviors that happen when people feel so unsafe, that they are feeling completely overwhelmed. And in that moment, those children feel that they don't realize that they're hurting mum or dad in that moment, they actually believe that they're fighting for their very survival. And it's something that we as a society, are not even acknowledging. It's been massively under acknowledged as a phenomenon for decades. Which means that those families are all trying to contain it themselves behind closed doors. And most of them are feeling absolutely rubbish as parents,

 Gill Phillips  28:09  
And so lonely. So, so lonely.

 Yvonne Newbold  28:12  
And the thing is, I don't see them as rubbish parents at all. My parents in my group are my tribe, my community, if you saw what they were dealing with on a daily basis, they are the ninjas of parenting. These guys, they just have such advanced parenting skills, there are the hype alert the whole time, they're often living on virtually no sleep for weeks, months on end, they are being that… they're able to jump in to avert crises, and to prevent injuries at a moment's notice … they spend all day lurching from one crisis to the next, these guys and then the rest of society blame and judge them and point the finger. I mean, it's it's tragic. We now have nearly 10,000 people in our Facebook group. And the other thing I started to do was I put together some information to try to help families to gain the confidence and the skills that I eventually got that turned Toby's behavior around. So I used to run workshops, and Malcolm was driving around the country to do workshops. And then of course, the pandemic hit. And that was really tough. Because I didn't think that the workshops were going to translate to an online digital format. I was very frightened that some of the material that I was talking about, some of the really heavy duty emotional stuff that we tackle. We were in a pandemic, people were very anxious and very frightened anyway. I didn't want to be the one to be responsible to say something to somebody who was isolated alone, with their own children with no community or support around them, and to say something that would lead them into a really difficult place. So I agonized, really thought long and hard. But of course, I also see in our group that at the beginning of the pandemic, a lot of people in our group are some of the most vulnerable families in the UK. And they were just abandoned. They'd lost their child's school place. They had lost any therapies, any services, any care, any respite, every member of their support teams had either been redeployed or furloughed. There, they were stuck on their own. The despair that was being shared in the group was heartbreaking. I was frightened for our community. So basically, I had to do something. So to cut a very long story short over the last 18 months. And of course, remember, because of my cancer, diagnosis, I was also shielding. I did not leave the house for a year. In fact, to be honest I’ve hardly left my dining table dining table in a year and a halfbecause I have so far, presented 250 2-hour long training sessions to parents

 Gill Phillips  31:30  
Yvonne, just stop a second in terms of…  I want people to take in some of these. You've managed to put, as we go, you wrote a book that wakind of like just in passing. You set up a Facebook group with 10,000 people, you've done 250 Live sessions now. I mean, I can say that I joined one of your training webinars. We had talked and I was interested in so on. And you not only ran the session, you spent half that night pulling together all the material and answering people and pulling together notes. What you do is extraordinary. So it's not just running the sessions, it was just so dedicated in terms of maximizing every bit of learning and answering every question, you're just so conscientious. So yeah, just stop and acknowledge for a moment 

 Yvonne Newbold  32:20  
Thank you. So basically, it's been incredible, this last year and a half -  those 250 webinars that I've run, we have had over 20,000 people come and listen to at least one of them. And now if the pandemic had never happened, and if Malcolm and I were still driving from one church, to the other, you know, around the country, it would have taken over 40 years for us to reach that number of people.

 Gill Phillips  32:55  Extraordinary. 
You'd need a football  stadium as well.

 Yvonne Newbold  32:57  
Exactly, exactly. It's crazy. So but what's really been incredibly rewarding, is to be honest, my heroes are the parents, the parents who are dealing with this, and then they come on to webinars, and they listen to me talking for two hours. And they probably think who is this bonkers woman telling me to completely change everything society's told me about everything and do it differently. But those who have actually taken that big, huge leap of faith, and have just thought, right, okay, we'll go for it. Well, we now have lost count of the number of children who have significantly been able to reduce their violence. As we got to about 1000. I just lost count, but we're getting about 10 Thank yous a day. And some of those thank yous. I mean, they just, I just beam with pride. And all I've done is I've just given some information. It's the parents who've put in the huge amount of hard work. It's the children who've responded to that. And the thing is, I look back, and it's my own family, and my children, I will never, ever be able to replace those 10 years of their childhood for them. It's not just the child, it's also the brothers and sisters. And what this work is actually doing is it's giving families hope. It's giving a child it's taking a child off a trajectory that otherwise might lead straight to the criminal justice system, or straight to one of these awful closed, locked psychiatric units. You know, the ATUs you know, the ones that are often in the press This is giving those children a real chance of a hopeful, happy, productive, wonderful future ahead. And it's also giving their brothers and sisters the same. And it's giving their parents peace of mind so that they're no longer worried about the futures. So I'm inordinately proud of all those families, they've done the work, all I did was point them in the right direction. So you know that they are amazing. And I've just absolutely astounded. And then of course, loads has happened since because of all of that. So we've got even more plans that have happened. But what I tried to do with all of those during the pandemic, was I tried to make them as affordable as I possibly could. So the first year or so, we charge £2.50  for somebody to come to our webinar. But as well as that all anybody had to do was to write to ,me they got a free ticket, if they really couldn't afford that. Because basically, it hasn’t even paid for itself. Because as you know, Gill, there are lots and lots of on costs to run the sort of operation that I'm running really.

 Gill Phillips  36:16  
There really are, yes. 

 Yvonne Newbold  36:18  
So we had to put the price up to £4.00.. But we're now moving into doing more longer term things. So that basically what we want to do is, we'd love families, still to have us to reach out to in 10-20 -30 years time, we'd love to do something now, that will us sustainable, so that we could become much more firmly established, both financially and organizationally. And that's the work that I’m really focusing on right now. So it is been amazing, but it's still a huge mountain to climb to get there. So yeah, 

 Gill Phillips  37:11 
I think you're telling the story so well, because you can see the different steps. And for you to come out with something like “all I've done, all I've done is just give some information”. I mean, obviously the listeners to this will know that that isn't an “all I’ve done” or a just, it's amazing. But you know the way you tell it in terms of giving credit to the parents, and for them to be able to have the courage and to try something new, and so on. And the the results that you've had is extraordinary. And I think the challenge for all of us with doing something that's perhaps tied in, you know, what you do what I do, perhaps a bit too much with one person. So what happens when that one person isn't there to continue to make things to use the buzzwords, sustainable. So I was incredibly excited when you told me your news in terms of a massive breakthrough. And that's what it is, really is how you're gonna make this work sustainable. So tell us about that.

 Yvonne Newbold  38:09  
Oh, it has been so exciting. Over the last three months, we have been given the most amazing opportunity. The only way I can describe it is that this falls into the dreams come true category. As you know, I do an awful lot of work on Facebook. And I think our Facebook group is really the sort of heart where everything, all the other work that I do, comes from and in the world there are I think it's 620 million Facebook groups. Now obviously some of them are sort of emotional difficult matters, like mine, some of them are village noticeboard type groups, some are birdwatching, you name it, there's a Facebook group for it. Facebook themselves want to invest in the groups that they felt were making the biggest social impact within their own communities. And there was an application process I applied way back in May. It's been incredibly tough to get through it. But basically, Facebook have selected 130 groups throughout the world out of 620 million, so tiny, tiny, tiny, and only 10 of those groups are the UK, and we're one of them.

 Gill Phillips  39:38  
That's extraordinary. I'm trying to do the maths, I mean, that would be one in …

 Yvonne Newbold  39:44  
One in a smidgen, I think so, what that means is that for the last three months Facebook have been giving us intensive training , intensive mentoring from some really, really top international management consultants. And they've also given us quite significant funding, so that I've been able to afford to do things that I was never able to afford to do. So we've managed to rebrand, we're now setting up … we were the SEND VCB project, which was the special educational needs and disabilities, violent and challenging behavior project. We're now Newbold Hope, we've completely rebranded, we've managed to have a designer to do all our banners. We've got company colors, which was a very proud moment. So you know, we're now navy, red and turquoise. We have a little tagline, which is, ‘stay curious’. Be kind, I love because yeah, I love the word curious. My favorite word is hope. My second favorite word is curious. If you stay curious, and you keep asking why? All those why questions? Why is the child behaving like that? What's happened? Why? just stay curious. If you keep on asking those questions and keep on trying to find out, you won't be able to close your heart and close your mind. And you won't be able to become judgmental. And I still believe that the judgment, and the blame throughout society is incredibly damaging. And I think it's much more far reaching. And its impact is appalling. So anyway, with Facebook's help, we now have a very, very clear path that we're hoping to follow over the next six months or so. So the first thing we're going to be doing is we're going to be opening a club for parents who want to help their children reduce any aggressive behavior. But unlike a webinar, it's not going to be at the end of a two hour session where I say bye then, I hope you get on, okay, this will be ongoing, you know, they will be able to access the material, I will do question and answers regularly in the group, they'll have other people to ask, there will be much more what I want to almost make it feel as though we're all holding their hand. And as they're implementing the things as they try get the strategy. If it doesn't go well. Or if it does go well, they can celebrate it with us all. If it doesn't go well. Well, let's talk about it and see what we can do. So you know, could we do it slightly differently, what might have made it not go well, maybe that's the wrong strategy, maybe try this. So you know, we're just going to try and do something that will offer more support. So that's first thing we're doing. The next thing we're going to be doing is we're going to be with all the webinar material. And altogether, I've got 16 different topics that I do webinars on, I'm going to take 10 of them. And we're going to develop each one into two pre recorded trading sessions, which will have a lot more material will be much meaty, because what I found was each of the trading sessions I've done, it's been more more of a speed talk, because I'm learning all the time, and you can't fit it all into two hours, I'm going to talk really, really quickly try to get it all in. So we're going to slow it down, we're going to do it over a double session, we're going to have the basics and an advanced for each course. We're also going to move much more into professional training courses, because there's very little training. One of the reasons that families do get judged and blamed is that the professional staff who are supposedly supporting them don't get any training whatsoever in this. So we will be providing that. So we'll be doing much longer, more structured courses for both parents and specific versions for professionals like teachers or social workers or clinicians or CAMHS staff as well. And all the courses are going to be CPD certified. But we're also writing a couple of e-books because some people prefer to read. So we're going to be writing that material out so that you can access it, there all sorts of other little bits. But the really big exciting isn’t news, and Gill, I so want you to come, on the second of April 2022, which will be five years and one day after our first conference.

Gill Phillips  39:52  
Oh really!

 Yvonne Newbold  41:40  
We're holding a conference, we're going to bring people together, we're going to have some excellent speakers, we're going to basically see how far we've come, see what else we need to do. But we're going to absolutely make sure that the people that really matter in all of this, the families who are dealing with this right now, can be welcomed and can be heard and can be listened to. So we’re just so excited about and I’ve given myself six months, not a month. Yeah. So you know, we're doing it properly.

 Gill Phillips  45:44  
It’s in my diary, if you'd like me to come on, I'll be there,

 Yvonne Newbold  45:47  
Oh, you will be guest of honour. Because Gill, quite frankly, if you hadn't helped me out five years ago. If you hadn't done that, then we wouldn't have been able to get to where we are now. So thank you.

 Gill Phillips  46:03  
Well, I'm just so proud that that, you know, I'm proud for myself as well, to be honest, that that's, you know, made a difference, because that's what we're trying to do, isn't it and neither of us knew where it was going. But it's only because of your dedicated hard work and that bucket list, that one thing? Yeah, just think about it, if you could rewind five years ago, and have been told that all of this would happen. And now the things that you've just summarized, and of all the things you said there in terms of webinars and so on, I think the one thing that I liked the best was to slow things down. Because I think the danger for all of us is you've got so much to say and so much to do. But this topic feels as if it needs peace and calm. It's what you're talking about, isn't it? So for you to get that opportunity and for parents to be able to, and to have that incredible support in terms of, well, it's not just the theory, and I've tried that and it didn't work, it didn't work very well, stop. It's to keep those conversations going and to be able to support people in that way, I think it's just phenomenal,

 Yvonne Newbold  47:09  
I suppose as well, what I've learned, and it has been a huge learning curve for me over the last few years, is that and I’ll tell you where the  starting point is, the starting point every single time is working with that parent, who nobody arrives in our group, crushed, broken, feeling like rubbish, to help them to start feeling good about themselves. To help them to understand that no, this was never their fault. And it wasn't their child's fault, either. But there's lots you could do about it. Because the thing is, for a parent to be able to put in the consistent work to support a child to turn around their behavior. They are going to need to be at the top of their game. And yet, all the judgment, all the blame that they will have heard, often from professionals from schools, from social workers, from CAMHS, from neighbours, from people in the Tesco car park, to their own extended family, sometimes their own other children or their own other partner, their best friends, they will have had so much judgment and blame in almost every circumstance. That's what we really need to stop because that does so much damage. And how does it help parents for me to say, oh, you're a rubbish parent, you're not really good at this. How's that going to help that child? Because surely we're all better people, better parents, and everything gets easier, the better we feel about ourselves. So my first job is to try and make parents feel better about themselves, and try and help them to be a little bit self caring, and self forgiving. And from there? Well, the only way I can describe some of the stories that I hear is it's been like watching magic happen every single day. And it is just incredible. And I always felt that if Toby could turn things around with his intellectual capacity with the fact that he is nonverbal, with his huge range of different impairments and disabilities. Well, if he could turn it around, I think anybody can. And I think we've proved that again and again and again and again. And it's probably what it is definitely the most rewarding work I've ever done. I love it. Absolutely. I've got the best job in the world.

Gill Phillips  49:57  
I feel that. I mean it must be SO rewarding. I mean, you're using that word magic. When you see it, I guess I can relate to that in an obviously very different context in terms of our work and our workshops and you see somebody just get something in a way that you know, is going to be significant from that point onwards. That's the magic isn't it, and the other thing I'm picking up is, you know, I love to kind of weave threads a little bit between the different podcasts and the different guests and so on. And something that jumped out at me that Rachel Grimaldi said earlier in the series was, she's an anaesthetist , and she tries to make each patient if you like, feel that they're the only one who's got her attention at that point, they are the one that she's looking after. And I'm picking that up in terms of how you're working with these different families who perhaps feel rubbish at parenting, because of all those things that have … the Tesco car park type thing - that I think will resonate with listeners, if you like, that we can all … I remember Yvonne, my eldest child, whenever he was playing up, we'd bump into the same woman in the village. Always. Absolutely, always. And I don't know what makes that sort of stuff happen. But I felt just such a rubbish parent, because that was kind of like all she saw. And you want to say no, it's not like that. He can be really nice. So for you to be able to give those parents that belief, and that hope. Your ‘hope and be curious’, Yvonne … ‘stay curious’. It's amazing.

 Yvonne Newbold  51:31  
Thank you. And what's wonderful as well is how the group has evolved. It used to be that I was the only one that had to go in at each of the comments, say, look, try this, try that try the other. Now. There are so many people that have been through the webinars, through the training, that have read all the other material that I've written and produced and what have you. There are now … if somebody says, Oh, this is happening, immediately loads and loads of people are able to offer the same sort of help and compassion, because we've got so many success stories in that group. Occasionally, a mum or a dad might drop me a line and say, Look, Yvonne, I'm leaving the group don't want you to feel that we're abandoning you. But to be honest, we don't need it anymore. So I always write back and I say, No, you're not leaving. You're graduating. Yes. We we actually do a little post when we know about somebody leaving. We actually do a little post, we congratulate somebody for actually graduating because they don't need us. That,, you know, wouldn't it be wonderful if there was nobody in the group because nobody needed us.

 Gill Phillips  52:42  
That’s the ultimate isn’t it, yeah.

 Yvonne Newbold  52:43  
Isn’t it. But I've done the maths based on the research that I found. There are two pieces of research I found. One was from a team in Missouri, I think in 2013, who looked at 1800 families, all those families had a child who had ASD or Autistic Spectrum Disorder, diagnosis, and they found that 56% of those children were at some point physically aggressive. Now, it's not because the children are autistic, it is because those children because they're autistic, have much higher levels of anxiety. And often, within our society or medical teams, that anxiety goes untreated, even unrecognized. In Ireland, the following year, in 2014, they looked at adults who had a learning disability. And in the group of adults that they were studying, they specifically looked at three different types of aggression - physical aggression, aggression towards property and aggressive language. And the rates ranged between 49% and 63%. So again, just over the half mark. Now, if we extrapolate that and look at the number of children in the UK, it probably means that today, about a quarter of a million families are facing this totally unsupported, totally alone. And with no understanding from anybody, no training, no nothing. Now, I'm incredibly proud that we have 9350 people in our group already, but it's only a drop in the ocean. We've still got nearly a quarter of a million people that need this sort of help but don't know about us. So one of the great things about this Facebook initiative is that we will be able to become a little bit more high profile as well. So people will be able to see what we're up to. And of course It's all a balance as well, because we don't want to go corporate, although we're going to become a community interest company,, we very much wanted still to be grassroots with heart and soul where each individual family matters. We don't want to become sort of corporate where everybody gets processed. And that's not what we're about at all. So, yeah, so that's what I do.

 Gill Phillips  55:29  
“That's what I do”. So hopefully, now obviously, it's what I'm trying to do through the podcast series. I mean, thank you so much, Yvonne, for spending the time , talking to me, telling your story. But hopefully, the podcast series can itself help build those networks and get your story out there. I think the fact that you've taken the time to explain, you know, where your work came from, obviously, with Toby, and then the challenges and how you've tried to do it in certain ways, and started small and worrying that it wouldn't be sustainable and then suddenly getting this incredibly exciting injection of everything really from the Facebook community. And then one thing you haven't talked about that I've been fascinated about - the other amazing people that you're meeting,

 Yvonne Newbold  56:17  
Yes. Oh, goodness, I’m in awe of the other nine people that have been chosen for the UK cohort. And can I do a quick shout out to all of them if I could remember them all? I’m just gonna have to come out with all nine of them, yeah. Okay. Victoria you rock with ‘Get your belly out’. Neil. I love you to bits with ‘Delegate Wranglers’. Jaidee - Black Owned Economy. You're doing fantastic work. Kelly, your work with women and research is just absolutely inspiring. Louise, food teachers putting healthy food on the map for the next generation of kids. I mean, you can't even put into words how important that is. That's my view. Jo. ‘Solo female van life’ that is just wonderful - women who are living in vans, travelling and having adventures all by themselves. That is just fantastic. Iolo, with your fashion. I love you. I just love, I just thought, amazing. Claire, now Claire is just … you just rock Claire, you are the coolest person I know. Claire started a Facebook group for parents at the beginning of lockdown. And within about I can't remember, it was about 4 or 6 weeks, she had over a million people. And it's gone huge. She just absolutely rocks and Nafisa xxxx,  you know, I just I adore you. I love the work that you're doing with the Muslim Mamas. And all the work that you've done for cancer awareness. It’s just … this group of people absolutely rock, you ought to have all of them on your podcast, Gill!

 Gill Phillips  58:08  
So I'm feeling a whole different life coming on, because I now want to know about all of these people.

 Yvonne Newbold  58:13  
Oh, yeah,

 Gill Phillips  58:13 
 I'm sure one or two of them might be future podcast guests.

 Yvonne Newbold  58:16  
Yeah, I'd also love to shout out to Catherine, Hendrick and Mathilde, who are the fabulous coaches and trainers and also to Shayla who works for Facebook, and has basically just believed in me all the way through. And even when I haven't, all of them have just been fantastic. They're helping us put this on the map. It's just brilliant.

 Gill Phillips  58:46  
So that's amazing. So I mean, obviously, if you send me any links, I can add those into the programme notes and so on, so that anyone who's really interested could look up and find some of these people.

Yvonne Newbold  58:55  
Yeah.

 Gill Phillips  58:56  
However, you want to use it really

 Yvonne Newbold  58:57  
Lovely. Okay, give me a couple of hours. And I'll put some links together. And I can put links to all of their Facebook pages if you like.

 Gill Phillips  59:04  
Yes, whatever you like, that would be fantastic. So Yvonne, I'm so glad you had a chance there to give a shout out to your amazing people at the end. Do you think there's anything else that you know we'll be gutted if we’ve missed out?

 Yvonne Newbold  59:14 
I tell you what, yes. Can I can I make another shout?

 Gill Phillips  59:17  
Yeah, right, okay.

 Yvonne Newbold  59:19 
I have got two amazing colleagues who work tirelessly to help me make the page what it is. They are Snow and Amanda, you both absolutely rock I adore you to pieces. And thank you for everything you do. There are other people involved too and there have been other people all the way through. We've had some amazing people on our team, and people dip in and out of it. But the thing is, everybody who helps with this work comes from the same background I have. Everybody has joined the group in a desperate state, has made things work, and then they joined our team to help make it happen. And so we've all got lived experience, and I don't think it would work without that.

 Gill Phillips  1:00:13  
No, it's so authentic.

 Yvonne Newbold  1:00:16  
Yeah. Yeah. That's it, I think.

 Gill Phillips  1:00:20  
Okay, so thank you so much, Yvonne Newbold, we've broken all our rules. We don't have any rules. I just said to Yvonne before this one that, you know, with the series, generally, I'm trying to keep to half an hour, this one was never going to be half an hour, because it's just such an amazing story. And I think, to put it together with all those different elements, so that it makes sense to people, hopefully, it will be a valuable resource that people can really understand what you're doing and why and how we can spread it out so that all of those … how many families was it that you want to reach?

 Yvonne Newbold  1:00:51  
I want to reach a quarter of a million in the UK.

 Gill Phillips  1:00:55 
 So who on this call can help Yvonne do that? Because that's really what it's about, reaching all those families, that that magic is potentially there for, but not at the moment happening. Let's do it.

Yvonne Newbold  1:01:06 
Thank you. Thank you, Gill.

 Gill Phillips  1:01:08  
Thank you, Yvonne. I hope you have enjoyed this episode. If so, please subscribe now to hear more of these fascinating conversations on your favorite podcast platform. And please leave a review. I tweet as @WhoseShoes. Thank you for being on this journey with me. And let's hope that together, we can make a difference.

Training courses for professionals
The power of connecting online
Yvonne - and Toby's - story. How it all began
Rare conditions - a lonely place
Toby exceeded expectations - his life now, aged 27
The difficult years - violent and challenging behaviour
A taboo subject - no help available. Blame, shame and judgement.
Unlocking the underlying cause - anxiety
Breakthrough!
The devastating effect on parents
Walking on air - but only for five days! Yvonne's cancer and terminal diagnosis
Bucket list - ONE thing - improve quality of life for other families
Living in extra time - and rocking it!
Making a difference! Helping famililies , 'one starfish at a time'. Awesome!
How did Yvonne do this? A book, conferences, speaker events, training events ...
Breaking the taboo - on Woman's Hour. Talking about Toby's behaviour for the first time - ever.
The floodgates open. SO many other families stepping out of the closet ...
These people need to come together - and be heard!
Yvonne's 0-60mph in 4 weeks conference, sponsored by Whose Shoes :)
Bonkers! Oversubscribed! Harrowing!
OMG, we are NOT alone! Being hurt by your own child. Hugging and crying.
Let's set up a Facebook group! New learning , new understanding of behaviours
NINJA parents - the very opposite of how they are viewed in society
Facebook group grows - now nearly 10,000 members. Workshops and more.
Can we keep doing this in the pandemic?
Vulnerable families were abandoned. All lifelines cut.
Despair. "I HAD to do something" ... 250 live webinars (while living with cancer!)
Yvonne’s dedication is awesome!
Reaching 20,000 people - the pandemic has brought new opportunities
Reaching whole families - siblings not losing years of childhood; children finding meaning, NOT the criminal justice system
Becoming sustainable
Support from Facebook! The groups making the most social impact
Launch of Newbold Hope
Stay curious, be kind
Next steps - walking with the families, offering more support
Top 10 webinars for parents - and slowing things down!
Training courses for professionals - and E-books!
5 years on - another conference. And Gill to be guest of honour!
Helping parents feel good about themselves
And then the magic happens - and it is so rewarding
Making people feel special - like Rachael Grimaldi
Peer support within the group
Graduating! Success stories!
Research findings. 240,000 families in the UK still need this support
Raising awareness and building the networks
Shoutout to the other UK Facebook super groups
Teamwork makes the dream work