68. “Every Life Matters” – an extraordinary conversation with Benedicte Symcox

🎙 “You’re amazing!” But what if hearing that doesn’t feel amazing at all?

In this powerful and deeply moving episode, Gill Phillips meets awesome Benedicte Symcox – parent carer, founder of Tugboat SEND Navigation, and passionate advocate for children and adults with complex needs.

Benedicte’s story is breathtaking. From the moment they met at Yvonne Newbold’s wedding (!), Gill and Benedicte struck up an instant connection – and this podcast brings it to life. With wisdom, humour, brutal honesty, and astonishing lived experience, Benedicte takes us on a journey through parenting three very different children – each with their own profound challenges and triumphs.

🎧 Expect to hear:

• The rollercoaster of navigating health, education, and social care systems
• Teenage mental health, neurodiversity, and diagnostic overshadowing
• Raw conversations about suicide, resilience, and “extreme parenting”
• How Benedicte’s lived experience powers her work supporting other families through Tugboat
• Why kindness, curiosity and valuing every life are non-negotiables in a broken system

This episode goes live in #CoProductionWeek - the week that  #MPFTWhoseShoes, the extraordinary Whose Shoes journey to better support children and families, is showcased in Staffordshire.

With her signature wit and passion, Benedicte reminds us why real voices matter.

This is one for the ninja parents, the professionals trying to do better, and anyone who wants to understand what truly matters.

🍋💡🍋 Lemon lightbulbs

🍋 Every life matters – regardless of age, ability, or achievements. 

🍋 Stay curious, be kind 

🍋 No one’s coming to save you – a tough truth from Yvonne Newbold that hits hard but empowers families to take action

🍋 Value doesn't come from capability – our culture must stop measuring people’s worth by what they can do or produce

🍋 You can't fix what you don't truly see – honest, raw stories like Benedicte’s open eyes and hearts

🍋 Children with complex needs are not always ‘inspirational’—they’re human.
They get stroppy, funny, scared, brilliant... just like any child

🍋 Diagnostic overshadowing destroys lives – assuming one label explains everything leads to devastating gaps in support

🍋 We need to talk about suicide – actually talk about it – no euphemisms, no sidestepping. Say the word. Save lives.

🍋 Professionals are often also parent carers : dual perspective

🍋 Honesty matters more than heroics – saying “this is hard” is more powerful than pretending to cope

🍋 Sometimes kindness means saying uncomfortable things 

🍋 Honest conversations are vital – especially around 'taboo' topics : sex, disability, parenting, mental health

🍋 Parenting doesn’t come with guarantees – ‘success’ can mean just surviving another day

🍋 Systems should support families, not punish them – blaming parents, gatekeeping support, and making people fight for help is not acceptable.

🍋 Hope lives in connection – whether through a podcast, a wedding, or a kindness conversation, real change starts with human stories

Links

Tugboat SEND Navigation – Steering you through SEND waters

Please visit the episodes with Cath Crock, Bob Klaber and Steven Russell

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Chapters

• 0:00 Welcome & connections - Gill introduces Benedicte, sharing how they met at Yvonne Newbold’s wedding and their instant connection
• 3:52 Jumping in with both feet - Benedicte explains her rapid connection to Whose Shoes, her work supporting families, and the importance of seeing every perspective
• 6:49 A family story begins - we hear how Benedicte’s journey unfolded - an “easy” start to life, then parenting three children with very different and complex needs
• 9:07 A sudden health crisis - the emotional account of B's youngest son’s sudden hospital admission and the traumatic early years navigating serious illness
• 11:23 11:23 – From France to the NHS - navigating two health systems, rare diagnoses, and the beginning of a lifelong rollercoaster of care
• 13:29 How “Little” survived beyond all predictions - now living a life full of unexpected milestones
• 15:14 When autism meets despair: a brutally honest account of her eldest son’s suicidal ideation at six years old and the reality of raising a bright, misunderstood child
• 17:33 Benedicte introduces her daughter, Kez - the 'delicate hand grenade' - fierce, funny, and navigating mental health, ME/CFS, autism, ADHD, and early motherhood
• 21:27 Kez’s journey to living independently, becoming a mother, and navigating adult life with strength and spirit
• 25:47 When systems stop - the gaps in adult services and how families must find creative, community-based solutions to survive
• 27:44 Personal trainers vs. physiotherapy - flipping the system - how Benedicte reframed health support using personal training when formal services fell short
• 30:08 Brutal questions, deep love - the ethics, reality, and heartbreak of parenting disabled children, including the unspoken questions around prenatal testing and quality of life
• 34:55 Honest conversations save relationships: a deeply personal story about marriage under pressure and the need to say the hard thing before silence takes over
• 36:14 You’re amazing? Really? Benedicte challenges the 'hero parent' narrative - what happens when people say you’re amazing, but you’re just surviving
• 40:08 Privilege, grit & gaps - a reflection on how education, income, and time make a difference—and why some families are left behind
• 43:06 Sex, TikTok & real Talk - opening conversations others avoid - about sex, parenting, and saying “suicide” out loud
• 45:20 Floofy dresses & fierce honesty - how being unexpected - small, quirky, outspoken - can be a powerful tool for truth-telling and changing minds.
• 49:03 ADHD as a learning disability? Benedicte describes the challenges of navigating maternity care for women with neurodiversity, and the stigma that still exists
• 52:53 Tugboat: Helping people help themselves - a teaser for Episode 2! Benedicte introduces Tugboat, her work helping families navigate systems and reclaim power
• 55:11 Final reflections & lemon lightbulbs - kindness, curiosity, and valuing every person - Gill and Benedicte reflect on the deep messages from this conversation
• 56:41 Invitations and next steps - Gill invites Benedicte to the Kindness Conversations - and the beginning of many more connections

Transcript

Gill Phillips  0:00  

My name is Gill Phillips and I'm the creator of Whose Shoes a popular approach to CO production. I was named as an HSJ 100 Wild Card, and want to help give a voice to others talking about their experiences and ideas. I love 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, Wild Card Whose Shoes is for you. Today, I am talking to Benedict Simcox, founder of tugboat, Sen navigation, and I can't wait to get our conversation started. I first met Benedict only about 10 weeks ago when I sat next to her at Yvonne Newbold wedding, as you do, Yvonne is the founder of Newbold hope, supporting almost 20,000 families who have children with complex special needs, particularly violent and challenging behaviour, I did a podcast with Yvonne in Episode 13, I knew that at Yvonne s wedding, I was likely to meet some amazing people, including other parents working in this space, making a difference to children and families with special educational needs, disability or neurodiversity, and I was not disappointed. Benedict and I struck up an immediate connection, and now she feels like part of the furniture in the best possible way. So I can't believe I have only known her for a short time. As many regular listeners will know, we are working closely with Midlands partnership Foundation Trust and Staffordshire county council crowdsourcing brand new Whose Shoes material around joining things up and offering a better deal for children and families. I'm proud to say that Yvonne Newbold is a key part of this work, and already, Benedict has thrown herself in joining us earlier this week on a virtual Whose Shoes event for parents of children with complex needs, I was blown away by the group of ninja parents who joined us sharing their stories and telling us what needs to change. It was raw and courageous, and I just hope we can help play a small part in making a difference for them in what is clearly a broken system. This is part of a big roadshow of Whose Shoes events using the new material to spark these crucial conversations that will be fed back anonymously to the powers that be. Oh, that's your big cheeses, isn't it? My big cheeses, your big cheeses. Notably, this feedback will inform the new send strategy that is currently being developed in Staffordshire. As part of this work, Benedict had the chance to shine her wisdom on some of the scenarios and poems that we are developing. I've been hugely impressed by her perceptive comments and suggestions, and now she is planning to come up with Yvonne to our big launch event in Stafford on the first of July. Oh boy, the power of networks. So this podcast is incredibly timely for the work we are doing, and also as a contribution to the national CO production week. So welcome Benedict. Can you tell us a little bit more about yourself and how it has felt to dive in and indeed make a big splash already to the Whose Shoes world?

Benedicte Symcox   3:52  

Oh, hello, Gill. Thank you so much for having me. Do you know 10 weeks feels like a long time ago? I thought it was less time, and then at the same time, it feels like a lifetime. We have this, we've had this amazing connection, haven't we have I remember you telling me about Whose Shoes, although I hadn't seen it yet, I could understand what you were talking about straight away. I suppose you know what. What I do at the moment is I work with families whose children have special educational needs and disabilities, and I help them navigate the systems. I also help adults actually, because the reality is that having additional needs, having a disability, it can happen at any time of life. It can happen to anybody and  it doesn't make us any less human, and I think that's possibly one of my overriding kind of passions and principles, is that the value of a human life isn't dependent on their ability, on their capacity, on their capability. Yes, and so that's sort of the thing that drives me, and you. Work, and we work with people who have different experience, who see thing, the same problem, from different perspectives. And I've jumped in with a huge splash with the Whose Shoes things I've been listening to, all your amazing podcasts, brilliant. Thank you, everyone I want. There's so much I want to say. And one of the most recent ones was talking about this beach ball analogy, where, if we're all sat around a table with a multi color beach ball, each of us sees a different color. Yes, I think I've through my experience. I've sat in different shoes. And one of the things that I'm really aware of is that a lot of the professionals that I work with themselves have sat in different shoes, so a lot of the professionals I work with are also parent carers, but we can find it really difficult to allow ourselves to stand up and move into the other seat that we inhabit. And your work is just lovely, because the event that we did this week was amazing. We had these lovely parent carers, and we were talking about the scenarios. The thing that really excites me about Whose Shoes is having the opportunity to experience it when you've got different parts of the system to have, you know, a practitioner and a parent and a big cheese on the same table. For a parent to be able to hear the difficulties that they have in managing the system is a big deal. So there's a lot going on. I wondered you asked me about myself. Is it helpful for me to give you a little bit of how did I end up here?

Gill Phillips  6:41  

Absolutely. I'm sure people listening would like to know and Leanne, like everybody's stories, it's an amazing story. So yes, please tell us more about you, Benedict.

Benedicte Symcox   6:49  

Thank you. So it's a bit of a mad story. I suppose. I had a very lovely, easy childhood. I had I was very lucky to go to very good schools, so I was fortunate to get a really lovely education. Life was just humdrum. Everything went as it should, and I went to university, and I got a teaching degree, met my husband, got married and became a teacher, and then we had our first child, and then second, and then third, all in very short succession. I had three under fours. By that point, we knew that the eldest he was extraordinarily intelligent and really challenging. He didn't understand authority, he didn't understand social interaction at all, very funny, very charming, but really, really challenging. And we were dealing with that when number three turned up. And then number three really threw the apple cart in, yeah. So we, he was rushed into hospital when he was 10 weeks old, goodness. And I was, you know, a few days before I'd been a little bit I was thinking, I don't know, he's looking a bit scrawny, but nothing obvious was wrong. Yeah, and I went to the doctor, and for you know, two hours, I was bustled along from one place to another, and everybody kept on telling me, Well, can't you see, he's terribly ill. What have you done? Why aren't you doing the the parent blaming bit that so many of us experienced started really aggressively.

Gill Phillips  8:20  

It sounds like it!

Benedicte Symcox 8:24  

The doctor's appointment that I went so when he was 10 weeks old, we were sent straight to the hospital. At the hospital, clearly the doctor had thought I knew something, because she talked immediately, she talked about a heart murmur. And I'm kind of thinking, what? And then very quickly it became apparent that he had a huge spleen and a huge liver. I had to then leave him in the hospital to go and look after the toddlers. It was Halloween. I mean, you couldn't make it No, you couldn't make it out. And we were called back at about 11pm the hospital called and said, You have to come in now, which is never what you want to hear.

Gill Phillips  9:03  

It absolutely isn't. No, never what you want. No, scary.

Benedicte Symcox 9:07  

And I said, Okay, well, can you tell me a little bit more? Because I've got two toddlers, nobody's, you know, my husband has to stay to look after them. No, I can't say anything. So we, we managed to get a neighbor, and woke up a neighbor, got her to come in, drove the half an hour to hospital. That wasn't fun, that's awful. And And there she told us that he had a congenital heart defect, but more urgently, she was convinced that he had leukemia. So yes, so we in, this was in France. So we were, I was receiving this information in French, then having to translate it and relay it to my husband, so that that experience of receiving bad news and giving bad news is something that actually, over the last 25 years has become something that I've had to do a lot. And. Possibly has been a big part, played a big part in, I think I have a slightly unusual ability to put myself in different people's shoes. Yes, I think you have Yeah, and I think that was part of it. So, so we embarked on this mad kind of leukemia Heart Journey with failure to thrive. At the same time, it went very, very fast. We were in France at the time. At the same time, we'd had our first psychiatric appointment for our eldest, and I'd been told that, unless I put boundaries in place, I should expect to have him taken away from me and be sectioned within, you know, two or three years it was a gentle, compassionate medical appointment that one, no mention of any diagnoses, just it was my parenting that was at fault. So there was a lot going on. Goodness me, we moved back to England, so my mum drove me and little by car, because we'd been told he couldn't fly. My husband took the other two by plane, and we jumped into the health service. Very unusually, because normally you can imagine that you go to your GP, you go to the hospital, you go to a pediatrician, you might then be referred to a specialist hospital. I was so fortunate that one of my very, best friends from school happens to be an oncologist.

Gill Phillips  11:23  

These people are just incredible, aren't they? 

Benedicte Symcox 11:27  

Yeah. And so I phoned her, and I said, "What do you do with a baby who's got a chronic myelomonocytic leukemia? And she said, "Well, no, hang on a minute. What do you mean that's something that old people get? Are you sure you don't meananother one?" I said, "No, it's all of the worst kinds of leukemias wrapped up in one precious bundle with a little yellow bow". And she was able to put me in touch with Great Ormond Street. So we entered the health system, the NHS system for him from Great Ormond Street, and then we were referred back down to local surfacing, right?

Gill Phillips  12:02  

So the opposite of what would normally happen, the opposite of what you would

Benedicte Symcox 12:05  

expect. And in that journey, that was an interesting journey, because we were all ready for a bone marrow transplant, and we met, and one of the lovely things about the NHS for me is when there are these pockets of phenomenal expertise. Particularly in these little niche areas. And we met a doctor who looked him and went, Hmm, this heart problem, this leukemia, and he doesn't eat. And look at him. I think he's got Noonan syndrome. Okay? And he turned out to be right. The geneticists didn't think he was right until the blood test proved them wrong. So we had all of these interesting kind of roller coaster in the medical world. So little, I call him little, I've got to change the name. I have to be careful of their confidentiality,

Gill Phillips  12:56  

Of course. Yeah, and that works for us here. Little, yeah.

Benedicte Symcox 12:59  

Little eventually, he was tube fed from the age of eight months to 15 years, really, which was a journey all of its own. We were a blended diet, family against medical advice, which was very, very difficult to do, but, you know, it kept him alive, and I don't regret it for a minute. He now he wasn't supposed to live past a year Gill, and he's going to be 22 in August.

Gill Phillips  13:29  

Goodness. And I can see why you're such good friends with Yvonne Newbold, the parallels, yeah, yeah. Parallels, oh, thank you for telling me. 

Benedicte Symcox 13:38  

So he, he actually ended up. We went through school. He did a supported internship, which is a fabulous scheme to support young people with additional needs into employment. It's like an apprenticeship, but with extra support. And he now is employed for one day a week. Brilliant. He manages. He lives at home, but he does an awful lot on his own. So that was, that was Little's journey, which it's difficult to describe, the roller coaster of emotions that constantly we were desperately trying to keep him alive for a really long time. In the midst of this, we have eldest who eventually aged six. I say eventually, he was only six, but my goodness, did it feel like a long journey. So aged six, he was diagnosed with autism, okay, yeah, very, very bright little boy, absolutely no understanding of social norms, social interactions, and to the point where by the time he was six, he was suicidal. He was yeah, he was begging me to kill him on a regular basis. Couldn't understand why he was different. Felt the shame that he felt at not being able to do what everybody else did was awful, and he had that articulacy that some autistic children have. So he he was bright, he sounded. Sounded so articulate, yeah. And to have a little boy look at you and say, Mommy, I don't want to exist. You shouldn't have had me, and I just want to die. And please, can you kill me

Gill Phillips  15:11  

his Oh, my goodness, yeah.

Benedicte Symcox 15:14  

It's really, really hard, and we had so we actually ended up taking him out of school before he was excluded, and I electively home educated him for about two and a half years. That worked for a while, and then it didn't. And Yvonne is a wonderful friend. I didn't know her at that time, but um, eldest suffered dreadfully from violent and challenging behavior from the ages of about eight to 1415, it's a long time. It's long time. And it became apparent that for my safety, and for little safety in particular, we couldn't carry on. So I I, at that point, I managed to get what was an EHCP. They called them statements back then, yes, which I've been told was would never happen because he was too intelligent. So we navigated all of that, and he went to a residential school when he was nine. Okay, which is really bitter sweet. Now you get the support that your child needs, and it's not necessarily what you want, which is, again, a big theme, and I'm going to talk about my daughter a little bit. My daughter now is reliant on Adult Social Care, and she has carers from an agency, and people often say, Well, you're so lucky. And of course, she's lucky to get the help that she needs, because that's that can be really hard to get. But it's not lucky to live with strangers. It's not lucky to need that kind of help. No, no. It's not lucky to get a placement in a residential school because you can't look after your little

Gill Phillips  16:50  

boy. Yeah.

Benedicte Symcox 16:52  

So, so he was there for nine years, and then he came home, and he still lives at home with us, and it is, you know, he finds life difficult, yes, but, but he's making his little progress. And then in the middle, we had girl, I can say girl's name, Kez because Kez is, is just Kez is one of the most wonderful people you'll ever hope to meet. I hope to meet Kez. Yeah, I'd love you to meet Kez. Kez is. I saw this amazing meme on Facebook recently and and it says something like, I'm delicate. Not delicate, like a flower, delicate like a hand grenade.

Gill Phillips  17:33  

Oh, that kind of delicate.

Benedicte Symcox 17:36  

Oh, wow. Kez was very solid as a toddler, and was first referred to cams, the mental health services when she was four years old. She wasn't eating, she wasn't coping. She had a lot going on at home. She didn't get the support she needed. She was eventually diagnosed with autism when she was 10, but a lot happened in between. She had a very, very difficult time. She then went to a special school when she was 11 that worked for about two years, and then it didn't work, because she she was, we were trying to say, but there's something else going on. She's her anxiety is off the chart, and all of a sudden she's very tired, and she's not running in the way that she used to. And there's just something. And we couldn't, we couldn't find help. It was all it's called diagnostic overshadowing.

Gill Phillips  18:26  

Yes, yes, yes. We've had quite a bit about that in our work. And autism or something like that would be a classic, wouldn't it?

Benedicte Symcox 18:33  

Yes. So Kez. Kez suffered dreadfully from diagnostic overshadowing from the time she was 10 till the time she was 19, and she suffered. As a result, she suffered a very serious mental health breakdown when she was 15, and that was very interesting, because she was in Year 11. But more importantly, she really broke down when she was 15 and years and 11 months old. So we went to the GP, we got the urgent referral to cams, and then she turned 16, and we didn't really care about 16. We were trying to keep her alive. At the time, we were very much on suicide watch and and then she turned 16, so I went back to the doctor to chase up and the GP wouldn't talk to me, because when you turn 16, you the GP needs the young person's consent to speak to the parents. Of course, yes, yes, and I was trying to explain, but she is, she is in mental health crisis. She becomes situationally mute, so she cannot speak to you over the phone. She's not well enough to write you a letter of consent. And yesterday, you could speak to me.

Gill Phillips  19:43  

This was like her 16th birthday present to cut out mum. Yeah, exactly perfect.

Benedicte Symcox 19:49  

It was, it was really challenging. We had to do an awful lot of work. She did a phenomenal amount of work. It's, you know, I mean, telling her story itself. Take three hours. When she was 19, she did a number of things. When she was 19, she'd got herself a little bit better. She was doing a little bit of PA work when her health allowed. So she was supporting other children with disabilities as a PA, which she loved doing. At the same time she tried college, her health hadn't been able to do it. I missed out to think she was diagnosed with me CFS when she was 18, yeah. So most of the a lot of the time, she was bed bound, and she decided at 19 that enough was enough, and she needed to sort her life out. And the first thing she did was she might, I need you to stop my EHCP, I've tried everything. I just I'm not well enough to access education, and it's just causing me stress. Just stop it. So we did, and she was trying to do bits of work. Then had a period of three months when she was in bed, and then in September of her 19th birthday, she came to me on a Saturday morning and said, mummy, I've got a job. Brilliant. Kez, wonderful. Congratulations. What are you going to do? I'm going to be working as a support worker in a supported living facility, working with autistic adults. So that sounds brilliant. Right up your street. You'll be working with the team fabulous. Where? Worcester, okay, we live

Gill Phillips  21:27  

in Surrey. Yeah, there's a little distance going on there.

Benedicte Symcox 21:30  

Worcester. Okay, where are you going to live? Oh, I'm going to move in with my boyfriend and his family. Okay, the boyfriend who is fabulous and is now husband. Oh, lovely. Okay, I was hoping that had a happy ending, very happy ending. But, you know, they'd known each other for about four months at this point. Yeah, at 19, that's already makes parents slightly alarmed. It's quite, quite special. My next question to her was, does his mother know? And her answer was, I think so, thanks. He moved out. Five days later, I kept seeing the car fill up, and then she thought, oh yes, I'm moving out. So she moved and then after a while, she decided that she probably needed a flat. So she found a flat, sorted that out on her own. This is a child, autistic child, who hadn't been able to step outside of the front door on her own. And I tell her story, and I know it takes time, but when I work with families, so people at the council when I tell my story, tell me that Kez is a success story. She's not. She is the most phenomenal survivor, yes, yeah, she but she offers hope, you know, and that for me, is a huge thing. So she, she got a job, she moved out her job, then fell through because her Emmy kicked up big time. In the meantime, she was diagnosed with ADHD. So those of you who know about ADHD will now not be surprised at how quickly things happen?

Gill Phillips  23:01  

Yes, it makes a lot of sense, doesn't it? That makes lots of sense.

Benedicte Symcox 23:06  

She also has Tourette syndrome, and she was diagnosed with functional neurological disorder, and in her case, that came with tics, but also out of the blue, her legs would just stop weight bearing goodness. So we've kind of moved on. She's, Oh, the other thing she did in the, you know, September to December of her 19th year. So she moved out, she got a job, she moved out, she moved into a flat, and then she announced that she was pregnant, deliberately. I love her to pieces. But when she told me, I thought, really, oh my good God.

Gill Phillips  23:40  

I think they don't appreciate how much this is for parents to process. There was a good news. It just needs to be thought through a little bit.

Benedicte Symcox 23:50  

So we had, you know, the next two, three years were huge roller coaster. Um, she's now 23 so it's not been a long time. No, it hasn't. She is now back in Surrey, she's married with two babies, lovely. She has completely lost, well, largely lost the use of her legs, has she really, she's a full time wheelchair user, getting on with life. And you know, navigating social care, adult social care services, navigating the joys that are benefits, because when you are too disabled to work, you also have to learn how to do this and and I think my experience of this kind of extreme parenting, I call it, allowed me to realize that it's not just education or just health that you have to navigate When you've got a child who has additional needs or disability, you have to do all of it. Yes, you have to learn how to make a claim for disability living allowance. You have to learn how which doctor do you need to see when they turn 16? How do you navigate that when they turn 18? Good Lord, well, you lose your pediatrician who was your lynch pin in the health system, and you move to adult services.

Gill Phillips  25:03  

Whatever that might be or not be, if there aren't any, perhaps, if your child's been well supported during childhood,

Benedicte Symcox 25:12  

Exactly. And that's a really good, good point Gill, because one of the things we've discovered is that your GP becomes a really important part of your care, but that means you've got to develop a relationship. But there are services. So for example, for little, little has all sorts of physical conditions. That means that realistically, if we were to look after his health properly, he needs physiotherapy ongoing. But physiotherapy ongoing doesn't exist in the NHS for adults, unless you have a social care element, it just doesn't exist. You can have six weeks blocks of therapy for if you've sprained an ankle.

Gill Phillips  25:47  

It's all time limited, isn't it? It's like cognitive therapy and that kind of thing, isn't it? Anything that really needs an ongoing support. Otherwise, if it does need good you're going to go straight back to where you were.

Benedicte Symcox 25:59  

Absolutely and that's very, very difficult. And one of the things you know, one of the things I love about Yvonne is in her trainings, those of you who've been through her trainings, one of the first things she tends to say is, no one's coming to save you. And it's, it's a harsh, hard thing to hear. It's a hard lesson that, yeah, really, very hard lesson. And I think it's where people like Yvonne and maybe myself, to some extent, we because we've lived through it. When we speak to other families who are going through it, it's it's a hard message that is softened by the fact that we're coming at it from we've been there. We know that yes and we know that you can do this. We know that we will help you find the support. But what we want to do is empower you to be able to do the doing to rescue yourself and rescue your child. It's very, very tough, and the move to adult services for me, it can be very hard. It can also be really liberating. What we did with the physiotherapy thing is, we looked at it from a different perspective. And we said, Okay, well, you need to do these kinds of exercise build up that strength. And we went and found a personal trainer, okay, yes. And actually, little who hated physiotherapy with a passion, loves personal training. So actually, by looking at health from a much broader perspective, which I know that a lot of people, particularly in the public health world, really want us to do, it's a much more positive experience, because we're doing that healthy living thing by living in the community, by living in the real world, rather than being stuck in this strange Special Needs world? 

Gill Phillips  27:44  

Yes, and I must tell you, I mean, just as a sort of chipping in an anecdote, so you say that you're becoming a devotee of the podcast. I don't know whether you've yet had a chance to listen to my friend Nicola Enoch, founder of positive about Down syndrome, so that would be a huge interest. And Nicola has become a friend, quite a local friend, actually, through my work. But the reason I had to absolutely jump in at that point, because I've been like so many thoughts have been going through my head during the conversation. I think Gill just keep quiet, because Benedict's story is just amazing. So Nicola's son, Tom, who has got Down syndrome, and she did a TED talk that I went to, talking about how when he was diagnosed, she knew nothing about it, and ultimately could have had him aborted, because she got so many stereotypes and so on, and she's become this incredible advocate. I'm so proud of Nicola and the, again, very similar network of of parents. They're phenomenal, these ninja parents. But anyway, her son, Tom, had ambitions beyond perhaps what society would have mapped out for him, and wanted to be a personal trainer. Oh, wow. And he is amazing. That is amazing, isn't it? So, like, a little bit flip the other side of the fence, you know, and he, I don't know enough about it, but, you know, I followed his journey, and I just think, Wow, that's amazing. And now he's living independently with support and so on. So I need to link you to Lindsay Douglas from Staffordshire. You will meet her on the first of July. I saw her yesterday. She's coming along. I need to link you to nicoloin. These networks are absolutely extraordinary.

Benedicte Symcox 29:35  

Yeah, it's funny because, you know, it's that coffee cup, coffee line conversation things, isn't it? That comes up again and again. It's really interesting, what you say about that, that notion of termination of pregnancy, I when, when little was really, really small. I can't tell you the number of people who very, you know, the best of intentions I would, I'd be there, you know, feeding my feeding my baby. Terri. Trying to get two drops of something into him, and people would look at me and said, Oh, but didn't you? Didn't you have an amnio?

Gill Phillips  30:08  

Yes, yes. That's so similar to Nicola story.

Benedicte Symcox 30:11  

What question with a baby in my office is saying, Well, why? Why would you choose to keep him alive. It's really, really difficult conversation. We, I have this conversation with my children now, and particularly with little and he, he doesn't want noon syndrome. It's not much fun to be disabled. No, it's not very inspiring. Actually, it's, it's pretty rubbish. And there is no you know, he wants to be alive. Of course, he's got a life to lead. But if you say to him, one of the questions that he he does have is, but you know, mommy, if, if I grew up and want to have children, will they have noon syndrome? It's a dominant gene, 50% yes, really, yeah, yeah. Now we know, because of that, there is probably the possibility of support to make sure that you can choose whether you have a child with noon syndrome or not, but, but there's that big question, if you have, I, if I, if I was given a choice between having a quote, unquote, healthy child and a child with no needs or disabilities. What would I choose? Honest to goodness, and this is, I'm, oh, I'm, I'm very, very cautious, because in in my world, this doesn't get set Yes, yeah, I actually believe in saying the unspoken. I would choose the healthy child, not because I don't love my children, not because I don't see the value in them and in their lives, of course, but our lives have and will continue to be really difficult, yes, and when you see your children go to school and not have any friends, when you when you have a child who is crying and in meltdown at the school gate, and everybody's looking now, when you have a child, and all three of mine, in one way or another, have told me they would rather be dead, it's I've never had, and they've never had a normal school experience where you just go to school and you play with your friends, you do a bit of learning, And you come home, you do a bit of homework. You go to clubs. We never experienced any of that. So if I get to choose before that life has happened, then it's an easy choice. That being said, I remember so vividly when when little was first taken into hospital. I think it was the second night. So for a few days, I was going into hospital every two days, because the hospital was miles away, and I had two toddlers, and we couldn't do everything. But I remember, I think it was the third day, my husband and I were still reeling. We were in shock, and we'd clung to each other, and he said to me, I don't actually understand I know that people split up over this kind of thing, but I don't understand it. And it was the following night where he turned away from me in bed, and he'd been really, really quiet, and I actually prodded him, and I said, this is how he looked me. Said, what you talking about? Yes. I said, you were saying, how do people split up? Yeah, I said, I think this. I think they stopped talking and, and I had, you know, I had to say to me, Look, okay, tell me what is your worst fear. And said, Well, what if he dies? And, and in putting that on the table, I was able to say, Well, if he dies, we will carry on. We will be devastated. But he is not the center of the universe, so we will carry on at the same time. What really struck me was that this little baby who was 11 weeks old to me, clearly, obviously had as much value as a 96 year old who was a Nobel Prize winner, who'd saved 20,000 people. Yes, it's a life. It's somebody's life, isn't it? And that matters. It matters. And I think this is a huge part of who I've become as a result. And and why I do the work that I do now is that every life matters and and every time we try and define why we go wrong, it's, it's like, you know, grasping the will of the wisp. It just, you have to, you have to accept it. You have to acknowledge it. You have to honor the fact that this little person, if, if they can't talk, they still matter. And if they can't walk, they still matter. If they can do amazing things and, you know, play the piano brilliantly, they still matter. Yes, yeah, that value of life is is just it's unknowable and untouchable and wonderful all at the same time.

Gill Phillips  34:55  

This is the most extraordinary conversation, Benedict. And I'd say I probably knew about the. 10 to 15% of that, yes, because we've only known each other a short time, and you've told me bits. And I thought, well, we're going to talk on the podcast, and it's just blowing me away, really, you know, the kind of Goosebumps moments and every life matters. And I think what you just said there, you know, your husband turning over in bed, and that's how it starts. And I think honest conversations, whether it's honest conversations between couples, between families. You know, I'm a grandparent as you are, we could come on to that honest conversations with healthcare professionals. And, you know, I can see now I've got these sort of Goosebumps moments, because we've had these, we had the session the other night with the parents. And in terms of planning for that, you look through probably only about 15 Whose Shoes, scenarios and poems, and you were telling me which ones really resonated with you, and I can see that one, that hidden struggle now, which is everybody else telling you that you're amazing, and it's really hard. You know, if it happened to them, then they they would have run a mile. But of course, you've you've never, you've not got the choice to run a mile, even if that wouldn't have been your choice for your life, as you say, before those lives were conceived.

Benedicte Symcox 36:14  

It's a very interesting one, because I think a lot is that it's a very hard thing to hear that you're amazing all the time, because I may, you know, I don't like my children a lot of the time. They are pains in the backside. You know, the little every now and again on telly, you will see a call for a bone marrow drive, for example, for a little child that's got leukemia, and you've got the kind of stereotypical child that that's lost their hair because of chemotherapy, that has a feeding tube and that is smiling, and the message always used to be then they never complain. They're always smiling. So I'm sorry to personally said the bubble, but my leukemia child was an absolute brat, and still is, and when you know when you've spent we had one time we had to get a blood test. We were at great home Street. It had to be done that day. And I'd said, if we can go back to the local hospital, we've found a way to to deal with his needle phobia. We're using gas and air. We're using the right nurses. Please. Can we go back and do it there that wasn't on offer, but, but we, we are, you know, we believe in consent, and we don't want to, you know, traumatize a child, chill three hours of play therapy time, and I was sat there going, she's just, you're not managing. We did get that. But actually we got there, because after three hours, I'd had enough, and I went into really mean, nasty mum mode, and I said, Sit your bum down. I am going to hold you. I don't care you, and scream to blue murder. I cannot carry on.

Gill Phillips  37:55  

You need this treatment,

Benedicte Symcox 37:57  

yes, and it is, you know, the reality. Is that children who are ill or children who have additional needs, who are autistic, who have ADHD, they live a really difficult life, they're not inspirational. Just because they get from one end of the day to another and it's hard. Doesn't make them special. It makes them survivors a lot of the time. But they're kids. They're teenagers. They get stroppy. And, my goodness, when they get stroppy, they really get stroppy. Yeah. And I think we have to get away from that. That notion of it makes, I think it makes us kind of in the normal world. It makes us feel so much more comfortable if we can see and if people look at me and they go, you're amazing. I couldn't do that. Well, maybe you couldn't, maybe you couldn't. And that's the other thing. Is not all of us can. And I find myself sometimes I work with families who can't, and they have been dropped by the system, and they find themselves in appalling situations where, you know some I mean, to be honest, in the best cases, services come in and they might find a residential placement for the child, or they might find something else. But most of the time, actually, services come in and go, Oh, okay, no, there's nothing we can do. And it's shocking. It's shocking. I don't think it's any surprise that a staggering proportion of the prison population is of people with additional needs, mostly undiagnosed, lots of neurodiversity, lots of learning difficulty, lots of learning disability. And those, those people, I would hazard a guess, come from families where the parents did their absolute best, but they couldn't cope. Know that I'm so fortunate. I'm highly educated. I have a degree. I have an ability. To articulate, analyze, create an argument and write coherently. Yes, and so I can navigate these systems.

Gill Phillips  40:08  

And perhaps don't need three, three jobs, you know, to keep the family going, and the whole kind of, you know, social disadvantage aspect.

Benedicte Symcox 40:16  

My husband ... you know, I used to be a teacher, but I stopped. I couldn't go back to teaching because of the children, but I had a husband who had a full time job, who kept the roof of our house, who kept food on the table. These are huge privileges in our world that the I'm amazing, no, I regularly want to bash them over the head with a shovel and dig a hole in the garden. I I want to, I haven't Gill, not yet, and they're bigger than me now, so I think we're okay :)

Gill Phillips  40:48  

But your honesty? Well, yeah, I, you know, I think as a parent, as a grandparent, you know that there isn't a lot of honesty, so in terms of, like, the really difficult times, and that's, you know, can be with neurotypical children, if you like. It's just the nature, isn't it, of families and bringing up children.

Benedicte Symcox 41:06  

I think there's, you know, you talked about open conversations, and when I was thinking about this, there is so much we could talk about, isn't that? Because the My life has taken me in so many different areas, and I've got three very different children, so so we could do loads on any tiny thing. One of the things that I'm really passionate about is open conversation, particularly when it comes to subjects that we're worried about. So actually, we did when I worked from the top from about 2012 I think I joined my local parent Carol forum. Okay, so these are organizations. Every local authority has them, and their role is collective representation. So the idea is that we gather views Whose Shoes just, you know, basically it's Whose Shoes type. Work. We gather views of parents, and we work with local authorities to effect systems change to make things better. It's a funny little world is the world of parent Carol forums and through that, I learned an awful lot more about the systems. I learned a lot more about families. I eventually became CEO of our of our parent Carol forum in between 2019, and for about three years. But having the the open conversations is really difficult, and one of the things I did when I was CEO was we did Facebook lives a lot, and Kez wanted to join me. She said, My I really, I want to talk to parents about what it's like to be a teenager with autism. And ADHD, I said, Great. So we did a couple of sessions, which we called baking with Kez. So we had the video on we were baking something. There was a particularly brilliant moment when her Tourette's kicked up. We had to put cheddar in the scones. And out of the blue, she goes, cheddar is for Nazis. Oh, dear. Oh dear, as you say, the opportunity to talk about Tourette's, yeah, she wanted to talk about sex. Yes. How do you know the notion that as a young, disabled adult, you might want sexual relationships. Parents find that really difficult to cope with services find it really difficult to cope with and interestingly, Kez has worked with a number of social workers in the last few years, and every single social worker she's worked with, she is the first person where they have ever had to tick the box on a social care assessment that says has dependents, because the vast amount and vast majority of Adult Social Care is either with elderly people. Elderly people or with disabled people who obviously can't have children.

Gill Phillips  43:48  

Obviously, yes, obviously. She says lots of sarcasm, yes, yes. Obviously, yeah. 

Benedicte Symcox 43:54  

So, so we, we, she wanted to talk about sex. And the other thing that I desperately want to say, very openly, is the word suicide? Yes. I don't want the Tick Tock and Instagram version of 'unaliving' or not being there. I want to say, No, this is real. This is serious. This is urgent. It is the word that we're looking for, is suicide. The word that we're looking for is this person can't tolerate being alive anymore to such an extent that they're considering doing something really, really drastic. And if we can't say it in the most awful, raw, tragic way that it is, then nobody is going to do anything about it

Gill Phillips  44:38  

Have that real conversation rather than the Tiktok or the superficial or the brushing under the carpet.

Benedicte Symcox 44:46  

And it's true that, you know, in the work that I've done, I frequently make people uncomfortable. I have to say, I'm usually quite pleased when I make somebody uncomfortable, because it makes them think a bit differently, and I turn up. You know, obviously we don't have video, but I'm very small. I'm just under five foot, and I'm quirky, and I usually wear big dresses with floofy petticoats.

Gill Phillips  45:11  

So I can think of your lovely dress at Yvonne wedding. It was, it was perfect.

Benedicte Symcox 45:16  

So I, I'm not ... I'm unexpected, yes.

Gill Phillips  45:20  

And the mother of ... let me just look at my notes ... the daughter who's delicate as a hand grenade. I wonder where she gets that from, Benedicte? there might be something in that.

Benedicte Symcox 45:33  

And her daughter is already coming along in the same lines.

Gill Phillips  45:38  

So okay, so I'm conscious of the time, and I've got an invitation for you, and I've got all sorts of things going through my head, so if I just reflect a tiny bit on a few bits that have really jumped out at me, if that's okay, of course, I think wow. Support for the whole family, who, when you go to one appointment with one child, has any inkling of any of that? And that was something that came through very, very strongly in our session with Staffordshire County Council yesterday, and in terms of really everything that happens with any family, but, you know, particularly children with complex needs, and the whole issue of siblings and young carers and so on came through loud and clear. I mean, honestly, there's so much we can talk about. So another, I love linking people. I love telling you about a relevant podcast. So to come to mind, but I'll mention just one for the moment, and that's Professor Cath Crock, who I'm proud to say, has become a friend of mine. She's in Melbourne, and she is phenomenal, and I think she's like me, but much better at just kind of envisaging something happening, and then somehow it happens. So we had a crazy Pied Piper day in Birmingham where I met Cath in person for the first time, and different people rocked up from Manchester and from Plymouth because they wanted to get together and meet Cath. But you can listen to Cath's podcast, and she is the founder of the Hush Foundation now cast story, just very briefly, is as a pediatrician and the mother of five, she hated a situation where, basically she was holding down a child of similar age to her own, and how horrible that is. You know, those kind of procedures that just have to be done and uses music so that she's the founder of the hush Foundation, the clues in the word and gathering of kindness. So music and kindness and trying to make a difference, and, well, not just trying, but succeeded in making a difference in some of these very difficult spaces. So that's one mention, if you like, you mentioned, and it was, I think, part of the 10 to 15% and you a little tiny bit about that. Your daughter is a mother, wheelchair user, and you're obviously a grandma. And I say we can have a whole separate conversation about that, but I'd love to link you to there's someone called Angelina Ankomah, and she's a, I won't even begin to try and describe Angelina. She's a force of nature, and we did a series of Whose Shoes maternity workshops across South West London. And I'd met Angelina because she was a Darzi fellow. I worked really closely with the Darzi fellows, and she was a midwife looking into supporting women with disability in pregnancy and birth. Amazing. And I think she needs to be a podcast guest, don't you? Which is kind of lined up, but one of my long lists that you know that doesn't necessarily happen very quickly. So that's Angelina. 

Benedicte Symcox 49:03  

And do you know that was one, one of the things we could talk forever, because Kez is maternity experience was, was really interesting, with some amazing positives and some dreadful negatives. One of the things that I learned from the NHS, which I still, I still have to square that circle is that in the NHS, or certainly in maternity services in the NHS, ADHD is considered a learning disability, yes, and that meant that every time that she met a new midwife, they were expecting to meet somebody with learning disabilities and has is very bright and very articulate, and so there would be this mismatch between the paperwork, where they would try to largely force her into decisions that she didn't want to make, and then they were questioning her decisions because she had a learning disability. It was quite a challenging and perhaps be patronizing, talked down to yeah, yes, yeah. And it's one of those things we go that I in. In all of the other systems that I know, ADHD is neurodiversity, we see it very differently, but in that space, it gets put in a different category, and that shifts how people treat you. I find that very interesting. 

Gill Phillips  50:15  

Well, very, very exciting news as at like, an hour ago, I found out that Ali Wright, who I think is wonderful, has been elected as President of the RCOG, and Ali right did so she wasn't the one I was going to mention, but now I am, because our conversation just goes everywhere. She did a podcast with me about personalized care in maternity so I think she genuinely wants choice and personalized care for women so brilliant. You know, the challenge of a woman with various needs that aren't the standard in maternity, and then how you get it so that not just the president of the RCOG, but the midwife who actually meets them in their particular appointment, because doesn't it make a difference whether it's this person or that person? Oh, my goodness, we talked about 'Golden people' and so on. So okay, without, without going off down yet another rabbit hole, so dangerous, talking to me, Gill, I don't stop Well, I think we can pull it to a close. And I think it would be a good one, because it's a close and a beginning. Okay, yeah. So what I'm suggesting is the other podcast that I wanted to mention, which I mentioned to everybody, and I'm very, very excited about, I spoke to Steven Russell, who spent, you're putting your thumb up, you've heard of you've listened to that one. I'd listen to that one. It's an hour of goosebumps, isn't it? It's yeah. And basically, I think the same happened as I feel is happening today, that Steven has got such a big story that we ended up I think it's a really great podcast, and we're both pleased with it, but it basically tells his story of how he got to where he is now, which I think is what you've done today, and I've invited Steven, and hopefully he will make time to do it, because he's coming up to his book launch in July, and I'm going to go along to that. And, you know, just stories, isn't it, and connections. But yeah, Steven, come back and do episode two, and I think by the end of the podcast, we might have strayed into Episode Three because I really wanted to give him the opportunity and for people to hear what he's actually doing as a result of his childhood in care and the phenomenal support that he's giving to children in the care system now. So Benedicte, I'd like to invite you. We haven't got round to tug boats navigation, so could we do, perhaps, you know, at some point, a second episode, because I'd like to give you the opportunity. How have you used all this experience to help other people? Because I think that's, that's the story that needs to be heard as well.

Benedicte Symcox 52:53  

I'd love to do that Gill, and I think, you know, it's, I'd love to do that, I think mostly because the big thing that I want to do with tugboat is to help people help themselves.

Gill Phillips  53:05  

Yes, I can feel that rescue. You know this, this quote that no one's going to come along and save you. Yeah, exactly. And the boat analogy and the navigation analogy, it's very clever. I'd love to hear more about it. Yeah, I would love to tell you more about it. I'm good. I need to stop myself. We both need to, yeah, for the people listening, we're doing zips now across our mouths. So okay, so I normally try to, like, obviously in the podcast, notes I can put about Tugboat, so people can find out a little bit about that in the meantime. And I also try and summarize some lemon light bulbs, and some of them are very obvious, like honest conversations, and believe me, and so on. Any, any just brief, final lemon light bulbs that you'd like to summarize with Benedicte,

Benedicte Symcox 53:55  

I think actually the biggest one for me is, is the value of a person, doesn't have anything to do with their age, their ability or their achievements. Yes, and the more we value people, the more we value each other, the more I know a big theme. We haven't covered it. I have no idea why. Okay, big thing that comes across in your podcast is the need to stay curious and be kind, yes, and that runs through everything I do as well, and it's the problems that I encounter happen because of a lack of curiosity and or a lack of kindness. And sometimes it feels like that's linked to us, not actually, truly accepting the value of the human who is causing us problems, you know, because they can't do, or because they won't do, or because they're just not able, and it's just it's inconvenient, and when we get to that. We've lost sight of the value of that life, and we lose the curiosity, we lose the kindness, and I think so if we, if we get the value curiosity and kindness, then we'll get to go.

Gill Phillips  55:11  

I think that's an amazing conclusion, apart from the fact that I now need to, if I haven't already, invite you to join our monthly kindness conversation. I mentioned this, you've mentioned them, yes, but I haven't yet. I don't know anything about them. Okay, so I attended one last night, which I happened to attend from basically a cricket match. Oh, wow. Because I really don't like missing it, because I'm quite, you know, I'd like to think I'm quite a core member of that group. Now, there's a mad group of us who seem to manage to join this conversation from wherever we are, unless there's something really, really impossible, and they're just the most wonderful people, and you would fit into that environment. I think, these supportive environments where, you know, you know, a big part of what I do is connections and networks. I can't tell you what would come from that connection, but I can promise you that you'd enjoy it. You connect with amazing people, and something will happen as a result of that. So sounds amazing. Another invitation. There we go.

Benedicte Symcox  56:12  

Thank you so much, Gill. I'm so grateful to have met you through Yvonne. It's just I've been buzzing since we met, and it's ...

Gill Phillips  56:13  

Likewise! And that's the Bob Klaber podcast. I don't know if you've come across that one yet. So a wonderful paediatrician in London. We all love Bob. I've never actually met him in person I will do, and this is it I will do, but I can put you in touch with Bob, and you can join the kindness conversation.

Benedicte Symcox 56:37  

It'd be wonderful. That sounds brilliant. Thank you so much.

Gill Phillips  56:41  

So thank you, Benedicte, for being a podcast guest. It's been so wonderful to talk to you. 

Benedicte Symcox 56:48  

Well, it's been really delightful. And as I say, I'm, I'm, I'm excited to see where this goes, and I can't wait to see you on the first in Stafford and and, and, and because this feels like the beginning.

Gill Phillips  56:59  

It does indeed. And I think, you know, I really felt in Stafford yesterday that people, I think you've mentioned this, you know, most people are good people. They come into the system because they actually want to help people. I can feel that so loud and clear, and the frustration across the board, and the hope that things can be different, and the reality of money and funding and so on. So let's hope that you know things can really improve by, I think, by people understanding more as you've helped so amazingly with your honesty today, what it's like to be a family with children with special needs, then if people actually understand that, it's got to surely unblock things, at least a little.

Benedicte Symcox 57:43  

That's what we all hope, isn't it? It's that that just the preciousness there's, there's something really precious about lived experience being being such a big part of how we shape the services and the systems that we put in place to help people.

Gill Phillips  57:58  

It's an amazing conversation. So thank you so much Benedicte, for joining me, and I hope it won't be long before you're back on the podcast telling us that the next stages of the journey.

Benedicte Symcox 58:08  

Thank you so much, Gill. It's been a pleasure. Fantastic.

Gill Phillips  58:11  

Bye, bye, then bye. Enjoy the sunshine. Thank you so much for listening. If you enjoyed this episode, it would be fantastic if you would leave a review and a rating, as well as recommending the Wild Card Whose Shoes podcast series to anyone who you think might find it interesting, and please subscribe that way you get to hear when new episodes are available. I have lots more wonderful podcast guests in the pipeline, and don't forget to explore and share previous episodes, so many conversations with amazing people who are courageously sharing their stories and experiences across a very wide range of topics. I tweet as Whose Shoes thank you for being on this journey with me, and let's hope that together we can make a difference. See you next time you.