Wild Card - Whose Shoes?

65. Nicola Enoch – It’s World Down Syndrome Day! It’s the global Podcasthon!

• Gill Phillips @WhoseShoes

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This special episode of Wild Card – Whose Shoes? is part of The World Podcastathon, a global celebration of podcasts that spark conversation, challenge perspectives, and inspire change.

I’m thrilled to welcome the incredible Nicola Enoch, founder and CEO of Down Syndrome UK, a powerhouse advocate who is transforming perceptions, challenging outdated maternity care practices, and empowering families. Nicola’s journey is extraordinary—one that began with fear and stigma when she learned her son, Tom, might have Down syndrome, and evolved into a mission to support parents, shift mindsets, and tackle inequalities head-on.

We explore the power of language in maternity care, the importance of early development, and how health inequalities continue to impact people with learning disabilities. Nicola also shares how her organization is training healthcare professionals and educators to see the person first and break down barriers that still exist today.

This conversation is raw, real, and packed with lemon lightbulb moments—insights that challenge us all to think differently.

Lemon lightbulbs 🍋💡🍋

🍋  Words shape experiences – Describing Down syndrome as a “risk” or “abnormality” impacts how parents feel about their child. Language matters.

🍋  Breaking bad news? Or sharing unexpected news? – How healthcare professionals frame a diagnosis makes all the difference.

🍋  Assume competence – Expecting less from a child with Down syndrome limits their potential. High expectations open doors.

🍋  Health inequalities are real – Diagnostic overshadowing leads to preventable health issues. Parents must advocate fiercely.

🍋  Community is everything – Peer support groups are lifelines. No parent should feel alone.

This is a must-listen for anyone passionate about maternity care, inclusion, and human stories that challenge stereotypes.

🎧 Listen now and join the conversation!

Links:

We hope you will donate to this important charity - here is how you can find out more!

#WildCardWhoseShoes #WorldPodcastathon #DownSyndromeAwareness #ChangingTheNarrative #CoProduction


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SUMMARY KEYWORDS

Down syndrome, health inequalities, maternity care, early development, parent support, communication, stigma, genetic condition, healthcare professionals, training, peer support, diagnostic overshadowing, constipation, fitness coach, World Down Syndrome Day.

SPEAKERS

Gill Phillips, Nicola Enoch

 

Gill Phillips  00:00

Gill. My name is Gill Phillips and I'm the creator of Whose Shoes a popular approach to coproduction. 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. 

 

Gill Phillips  00:46

Welcome to this special episode of the Wild Card Whose Shoes podcast. So why is it special? I'm delighted to be taking part in the world Podcasthon which runs all this week. There are over 1600 podcasts signed up across the world, a global celebration of podcasts that spark conversation, challenge perspectives and inspire change. Each podcast taking part is dedicating their special episode to a favourite charity. For this special opportunity, I'm speaking with the incredible Nicola Enoch, chief executive and founder of Down syndrome UK, and we are publishing the podcast on the 21st of March World Down Syndrome Day. And Nicola is here with me in person today. Hi Nicola. 

 

Nicola Enoch  01:37

Hi Gill. Lovely to be here. 

 

Gill Phillips  01:39

Nicola is a true force of nature, challenging outdated narratives and championing a world where every person with Down syndrome is valued, celebrated and included. I first met Nicola when she came to a Whose Shoes maternity workshop at Warwick hospital, and we connected strongly. We have since done some work together using Whose Shoes to help improve communication between healthcare professionals and parents, or parents to be whose child might have Down syndrome. I've learnt a huge amount from Nicola including having the great privilege of going along to hear her TED Talk in Leamington Spa. She also invited me to speak at her national conference, where I was blown away by the resilience, dedication and innovation amongst this wonderful community of parents championing the needs of their children and young people and influencing national policy. I've been hoping to get Nico on the podcast for a long time, and I'm sure we will talk about some of the health inequalities that people with learning disabilities face, which feeds into a strong theme running through the podcast series at the moment, how health inequalities affect different groups. Being part of the world podcast on is a perfect fit for Wild Card, Whose Shoes a space where we explore human stories, bus stereotypes, amplify unheard voices and dive into the issues that matter. So welcome. Nicola, can you tell us a bit more about yourself and what drives this important work that you do? 

 

Nicola Enoch  03:21

Oh, thank you. Gill, delighted to be here and have this opportunity so well. It all started my involvement just over 20 years ago, when I was pregnant with my second child, Emily, my daughter, at that stage, was three and a half, and I was age 39 and I can vividly recall my obstetrician being very concerned around my risk, as he would refer to it, of having a child with Down syndrome. And so I paid to have what were the private tests at the time, the NICU fold, and I can't remember the figure, but it was in approximately one in two or 300 so it didn't necessitate any sort of further investigation, but nonetheless, my obstetrician had it written in red on the front of my folder, and I can remember at my 20 week anomaly scan, it was a Friday afternoon, and the sonographer had gone very quiet, and she said, I'm afraid it looks like baby may have talips club foot. And she said, We think you know that can be indicative of a chromosomal abnormality, such as Down Syndrome. And I remember being so scared and worried, and the screening midwife came in, and I was crying, and she consoled me, but she said, Don't worry, we can get it sorted, you know, I'll book you in for an amniocentesis next week. And I don't really remember being asked it was very much the sort of default i. Uh, process. And so I went home that weekend, and obviously jumped on Google, and I decided I felt I could cope with baby having Tala pays. I thought, you know, maybe corrective surgery, that physio may help, or whatever. I didn't really know a lot, but I felt I could manage but having for a baby to have a learning disability, such as Down syndrome, which I really felt sort of had a lot of stigma and prejudice around. I really didn't want to be that parent. And prior to Emily, I should say, I'd had four miscarriages, and so I was nervous, because an amniocentesis does have an increased risk. And so I persuaded myself. I thought I knew also this will be my last pregnancy. If I, you know, terminated this pregnancy, that would be it. And I really wanted for Emily to have I knew she wanted a little brother or sister. And so I persuaded myself everything will be fine. And Monday morning, I phoned up and I canceled the amnio, and I, to this day, say it's possibly the best decision I've made in my life, because I certainly was on the of the mindset that, you know, I think if we discovered baby has Down syndrome, may well have terminated. So a few months later, obviously Tom arrived, and for 24 hours, I was euphoric. I had Emily and now a gorgeous little boy, and I really, really felt my world was complete. I remember waking up on the morning after he was born just feeling on top of the world and thinking I was the most. You know, I couldn't be happier. But within a couple of hours, almost, sort of when Tom was almost 24 hours to the minute, a paediatrician came across and expressed concern. She said they were worried that baby may have Down syndrome, and she didn't handle it at all well. She didn't know what to say. She was with the junior doctor. Neither of them knew what to say, and so they kind of shuffled off, left me to it with this, what I considered devastating news. And then moments later, Emily and John arrived. John took one look at me and thought, perhaps you know Tom had died, because I just looked so distraught, but obviously had to hold it together because of Emily So briefly, I had a torrid time at time when I craved information, and this was in 2004 so pre, you know, accessing everything off on my phone, I felt very alone, very Yeah, desperate for information, and yet, I was given a leaflet about Down syndrome that was published in the 1970s and it just perpetuated all the outdated imagery and perceptions I had. And I was in hospital, Tom had been a section, so I was kept in for four nights, and that first night after they expressed concern, Tom was in the Special Care Baby Unit, just because his temperature kept dropping, and I can remember lying in the bed in a private room, and actually wondered whether it would be better for us all if Tom didn't survive, not that his life was in danger in any way, but I just felt devastated. I didn't know how I could cope. So I found myself having been desperate for another baby. Now wishing my baby didn't live. I thought it would be easier dealing with him, you know, dying, than having to deal with it. And on that Friday, I left the hospital without Tom, whilst I spent another weekend contemplating how we could cope, and we considered having him adopted, and once again, Monday morning was eventful, and we went and picked him up from the hospital, and hand on heart, have not for one moment, ever regretted that decision, because I've gone on to discover there was never anything wrong with Tom. You know, it was my attitudes, my understanding or lack of understanding, my genuine ignorance about Down syndrome. You know, I've never met anyone with the condition, and yet, here I was. I'd rejected my son twice, so I had a really difficult time. I craved information what our lives might look like. I was terrified. I thought we'd be overwhelmed by Tom's condition, that we'd almost never leave home, that we wouldn't go on holiday, and Emily would be her life was also going to be tarnished in some way. And obviously, you know, I've gone on to learn just how wrong I was. You know, having a child with Down syndrome does present challenges, but it's, you know, the positives far, far outweigh any. The negatives and the challenges. So I came from a place of utter despair and devastation, and it took me months, if not a year or so, to sort of fall back in love with Tom and become more educated and able to sort of look forward remotely positively and and I realized I needed to connect with other people in the same situation. I felt so desperately alone, all my friends were having babies, you know, who were typically developing and wouldn't understand some of the worries and fears I had and perhaps even the shame and feelings I felt. So I connected with a couple of other parents, and decided to set up a local group, which I did in Warwickshire, the ups and downs. And really benefited from those connections, and we became a registered charity and meeting regularly, and I started to understand the importance of early development for our children. And so it just grew. And then I found myself, sort of, over the years, comforting other new parents who are in a similar position to myself, desperately scared and upset. And I'd sort of go round and say, you're going to be okay. But I was frustrated that this was carrying on. And so when was it? I think in about 2017 I'd been in contact with a local expectant couple expecting a little boy by her IBF. And I'd spoken with them once or twice, and then one day, received a text saying that they terminated because they'd been told by the doctor that the baby would suffer. And that just really upset me, but it also really annoyed me, because by then, you know, Tom was a teenager, we were living a very happy life. I could see, you know, just how wonderful he is. And I was annoyed that I knew that, you know, 90% of women who discover whilst pregnant their baby has Down syndrome do go on to terminate. And as someone who'd been on that track, I can understand why. And I was frustrated. I thought women deserve so much better. And so I started off just creating a website pads positive about Down syndrome, and I really wanted to just provide people insight into that lived experience that I'd craved. None of us can predict the future for anybody, but at least you know, I just thought our lives would be so desperately different to what I'd expected. And whilst different, it's not all negative. You know, we have still gone on holiday, and Tom going through mainstream school, he wasn't a burden to Emily and all those things I'd been scared of. So that's how pads came about, which literally was just a website, was a bit of an antidote to all the negativity I'd experienced, and I realized, you know, was still prevailing in maternity care. It's an extraordinary story. Nico, and thank you so much for telling it so honestly and so generously. And I've heard it before, and each time I hear it, it's still very, very moving. And I hear different aspects and different elements, but I think what I hear is in common with so many of the wonderful people I speak to on the podcast. You took your lived experience and did something with it to help others. And it just becomes a passion, doesn't it? To Yes, other people going through the same situation that you did, yeah, when it really was happening, you know, yeah, you know, the the impact was, was huge. I can't imagine, as a woman, making a bigger decision than, you know, choosing to terminate a pregnancy. So that was one element of it. And then also all these new parents who, you know, baby arrives, and the whole, the joy, euphoria that you should be feeling is just taken from you by some sort of careless remarks or poorly thought through language, you know, and that's something that, as a charity we do a huge amount of work on is addressing, you know, we the whole thing around when you just get Your screening results, you know, referred to my obstetrician talking about the risk of having a baby with Down syndrome. So risk only ever has a negative connotation. And it was things like that that kind of subliminally, I think, had influenced my thinking around the condition. You know, the fact that sonographer refer to him the condition as a abnormality. You know, it's routinely described a genetic disorder. All those things aren't particularly endearing, although, you know, so I, I'd say to people, you know, my son has a different genetic makeup to my daughter. You know, he has a genetic condition. Yes, we don't need. To use, you know, language of disorder, abnormality, risk, a very negative and therefore quite discriminatory really. Well they are towards people with the condition. And the attitude, you know, the staff, when Tom was born, you know, regularly they were saying, Oh, didn't you know, what were your results, you know. And the inference obviously being that, had I known that Tom wouldn't have been there because I'd terminated. And it was particularly difficult because I I knew that too. And yet here I was, you know, fait accompli. I persuaded myself he'd be all right, and he arrived. And I thought, you know, it was a major problem, and that's carried on. So it's something, you know, we campaign a lot around. And, you know, undertake Freedom of Information and discover, I think it was the last count. 46% of trusts were still using the word risk, really, yeah, which is really still now, yes. I mean, this was maybe three years ago, yeah. But, you know, 21st century UK, and we've really got to challenge that. And I think for healthcare professionals to think about their knowledge and understanding of conditions such as Down syndrome when they're supporting an expectant or new parent. You know, in the whole mindset, we do a lot of training with students and healthcare professionals about you know, if you have the mindset that you're breaking news, Breaking Bad news, that your body language before you've spoken a word conveys that so we sort of advocate, consider it sharing, sharing unexpected news, because it the impact on our parents is significant as a charity. We now, you know, having started off as a website, we now provide online support at this point in time, approximately 100 expectant women across the UK, 850 ish new parents a little one up to 18 months, a couple of 1000 preschoolers and so on. So we are really immersed and here on a daily basis, what's going on in both in maternity services, but also in preschools and so on. And, yeah, just the sort of common, you know, the risk, the being sorry, you know, when parents given the news that their baby has Down syndrome, whether I know it whilst pregnant or postnatally. You know, I'm sorry, it's bad news. Well, that sets the tone before you even know what it is. So there's so much work to be done, and it has such an impact on parents, mental health and well being, how well they accept or reject their baby, and yeah, it's, it's something we're very passionate about, and have been delighted. We've worked quite recently with the RCM here in the UK, so the Royal College of midpoint that said, Yes, who've collaborated with us to produce, I think it's three I learning modules so far around sharing the news around the language, about having a contemporary understanding and so on. It's simple things that but can make a huge impact. You know, for practitioners and and that's what we as a charity, you know, try to provide to our parents and professionals. Is that insight into the lived experience and well, so much more for our parents, we're also supporting them around how to help their child, because, as I mentioned, when Tom was little, I quickly discovered how important early development was, and so nationally, we run online early development groups for those families who don't have access to a local group, such as ours in Warwickshire, so that all our children across the UK have access to that sort of specialist knowledge.

 

Gill Phillips  18:46

It is an extraordinary contribution, I think, and it comes so naturally from your own experience and from what you've seen as the gaps or the things that would have helped you. And I think in terms of my wider who shoes work, if you like, the responsibility of these conversations, and in this case, these first conversations to that person. It's difficult, the healthcare professional, it's it's part of a busy day. So it will stay with that mother, those parents, forever. Absolutely, and I think the number one probably thing that's come through all of our workshop were probably communication and language. Yes, which are, you know, different faces of the same thing, really, but the language. I mean, I think probably when we met at that first workshop, maternity workshop in Warwick, one of the very popular Whose Shoes cards at the time was failure, and in maternity, the number of different ways that healthcare professionals might dream up to use the word failed, or in a failed induction, an incompetent cervix failure to progress in labor, it's it's a negative. Word, and it's a fact that things need to perhaps move faster, but it's how you phrase it isn't itCompletely.?

 

Nicola Enoch  20:06

Completely. Yeah, yeah. I would just  ...You can't underestimate the importance of language, yeah. And I guess you know when you're talking about people with Down syndrome, I think it often. You know does reflect attitude, and I think, you know, it's a bit of an elephant in the room, but often people, particularly in healthcare, do perceive someone with Down syndrome as inferior to someone without. We certainly, you know, sadly, have women expecting twins, for example, one with Down Syndrome and one without. And you know, I know a few women who've, you know, go for their routine appointments and will have midwives and obstetricians sort of saying, Oh, you're going to keep them both, then you don't want to get rid of Baby A and they are offered terminations repeatedly just because of a baby having Down syndrome. And I just find it, well, actually, I find it deeply offensive people with Down Syndrome, and I find it I'm frustrated as a woman, that women's choices are being undermined and her sort of autonomy too, and that we shouldn't, you know, I don't believe it's a healthcare professionals role to make that judgment. You know, if there's no medical need, why women, well, are being offered terminations just because of baby having Down syndrome. And I think, yeah, we need to really review that and consider the inequality around attitudes towards those with a disability

 

Gill Phillips  21:47

And twins. I mean, that's really shocked me. That's a different scenario. I haven't heard that before. And what conversation would that lead to later in life, where you tell the other child, your surviving child, that actually you were a twin? What conversation would you build around that it's

 

Nicola Enoch  22:03

it's scary. It really is scary that we kind of have this attitude. And I hope, as I've sort of made it clear, I I don't have an issue with a woman choosing to terminate. Yes, yes, it's a times that's absolutely a woman's choice. But I do have issue with healthcare professionals perhaps putting pressure on women, you know, and lactation, absolute expectations flip it that way. That's the expectation it really is. So that's the default, and women's choices are often undermined. You know, we've done a lot of research around this, and just publishing now with Warwick University about how women, you know, who say, I'm continuing, I'm happy, and then, you know, their choices are still undermined by saying, you sure, I've never met anyone before who's carrying on. And also, those women find that they often fall, fall between the net in that because the sort of healthcare professionals say, well, she's chosen to continue. She must be happy. She's not, then given the support she needs. You know, it's like, well, you made your decision on you go. So that's something you know, that needs to be considered. But certainly for us as a charity, it's, it's a fabulous you know, we've created this community where expectant women can connect, you know, with 90 or so others across the UK and discover that they're not the first nor the last who are scared and worried. And likewise for our new parents, when they reach us, we send them all a copy of our book. Nobody told me the truth about Down syndrome. Yes, we've got that on the table here today. We've got a copy here. Can you gave me that some time ago and excellent, very informative and beautifully produced. Thank you, Happy book, yeah, well, it's just, you know, it's that insight, you know, I we worked hard to sort of make sure we got good representation, you know, families with a whole range of experiences, you know, discovering pre and post birth of those IVF twins, first born, fifth born, yeah. And we also heard from grandparents. A lot of dads contributed. And really importantly, we include people with Down syndrome whose voices are often, perhaps not heard. I do find myself sometimes, well, I'm very mindful of, you know, my son, Tom never having to justify his existence, yes, and I think that's, you know, a fine line we have to tread sometimes for people with Down syndrome, that sometimes they almost have to sort of stand up and say, My life's good enough, and that should never be the case. 

 

Gill Phillips  24:31

And nobody told you. Nobody told me, yeah, that Tom would be a fitness instructor. I know. I mean, I've followed that story that he hasn't caught up recently, and I've followed that with such joy, really, to see his dream come true. Yes,

 

Nicola Enoch  24:44

Yeah, well, that's it. You know, when he was born, I was so scared, and I just immediately the sort of society's expectations were just lowered. I just, well, there was no sort of real role models or people would. Down syndrome, represented, you know, in social media, on the television, in the press or anything. But that's changing enormously. Now, you know, we have, we've got

 

Gill Phillips  25:10

Lovely George, Webster, fabulous George!

 

Nicola Enoch  25:14

Yes, he's on CBeebies as a presenter, which I think is really wonderful for our parents to sort of be able to put the telly on, you know, for their young child with Down Syndrome and other siblings, perhaps, to watch, and there be a young man with Down Syndrome presenting,

 

Gill Phillips  25:32

and not just presenting, but with the biggest smile in the world and the most joy and the most enthusiasm, it's just catching, isn't it? That's

 

Nicola Enoch  25:39

Right, yeah. I often think, you know, people with Down Syndrome are so poorly discriminated against. And yet, you know, certainly with Tom, you wouldn't ever meet anyone who's less discriminatory himself, you know, who always is the good in people. And yeah, doesn't judge anybody. And yet, people with Down syndrome, sadly, are so often judged and sort of written off and not given the opportunities and having the expectations that we have for other children and members of society? 

 

Gill Phillips  26:11

Yeah, I think we can learn so much from all sorts of difference and from people with Down syndrome, perhaps what's important in life sometimes, you know, we strip away some of our busyness or our expectations completely.

 

Nicola Enoch  26:24

I think that's one of the things our parents, in time, really value and go on to learn. Certainly I did that. You know, we all worry about so much nonsense and carry, yeah, sweat about the small stuff that really when you do have a child. Or, from my experience, you know, with Down syndrome, I just did focus. I slowed down, you know, I wasn't rushing for the next milestone. And, yeah, it can be tricky. You know, when you're in your play school groups and NCT groups and so on that. You know, little Johnny across the rooms just spoken his first Japanese word, or what? Yes, I'm sure it can, you know, it can be difficult. I can remember, definitely, you know, feeling awkward and uncomfortable that other children were doing things that Tom was miles off doing. But when he did achieve those things, my goodness, yes, the feeling of pride and yeah, the sort of celebration was, was all the greater, because I knew how he'd had to work for things, you know, when he you mentioned that Tom's recently qualified as a fitness coach, and we had a little graduation ceremony at his gym, and I invited his physiotherapy, who used to come to the house when Tom was a few months old, and was working with us to, you know, help Tom develop his gross motor skills, because most babies were dancing were born with low muscle tone, hypertonia, and so I wanted her to see, you know, here he is now lifting weights of all things, exactly. Yeah, he's so physically strong, but, yeah, nobody told me that when he was little,

 

Gill Phillips  28:01

And that's a great example of the special people who believe in you, isn't it? Who believe in you and you're a child, yeah, what they can achieve, rather than all the deficits that sometimes ...

 

Nicola Enoch  28:10

That's right! It is about, ...I find in our community, it's about giving our young people the opportunities having high expectations. You know, I kind of say, assume competence until proven otherwise, almost, but all too often. Yeah, it's difficult. You know, in education, we've expanded recently into providing more services to our families as their children now go to school, and that, I would say, you don't know what you don't know. And I think for a teacher whose perhaps never worked with a child with Down syndrome, it must be probably quite daunting, but I know that. You know, with the right attitude, schools can generally make it work for our children to be educated alongside their friends and siblings and so on. But it is often about attitudes and expectations and not, yeah, writing people off, I suppose.

 

Gill Phillips  29:03

So tell us more about the training that you offer, because it seems to me that Down syndrome, UK, you're a small charity punching way about, you know, using the fitness analogy, punching perhaps way above your weight in terms of the impact and the service that you provide. So what do you do? And what would you perhaps like to do more of?

 

Nicola Enoch  29:22

Thank you. Yeah. Well, certainly, our passion still in maternity services, because we know how significant the impact can be. So we have a training manager, and we're very happy to work with maternity units across the UK, generally online nowadays, delivering. We have a lived experience training program, I should say we also do a lot of work in breastfeeding, because again, that's another area where there's a lot sort of outdated perceptions, and we've undertaken research to show that our babies can breastfeed very well. So we have a breastfeeding supporter who also delivers training specifically around that. So we're really happy to. Connect with maternity units, any healthcare provider, really, in the UK, and also to provide our resources into maternity units so that parents have access and then on the training. We also now work in education, so yeah, preschools and primary schools, we have programs. We're very much about providing information, but also ongoing support. I think for those you know, when the child reaches a school, we've all done it, gone on a training course, and thought, Yep, got it, and then a month later, you're going, Oh, how does that work? You know, when you actually sort of try and implement a strategy or something, and it doesn't quite go to plan. So we, in our education training, we have ongoing support as well brilliant.

 

Gill Phillips  30:45

So then another aspect health inequalities we've touched upon, obviously, people with learning disabilities and sometimes the stigma or just the expectation that you know they won't do so well, is an inequality in itself. But what about diagnostic overshadowing? How does that affect this community? 

 

Nicola Enoch  31:02

Oh, a lot. Yeah, yeah. It's a really common theme. So in our close groups, we quite regularly will have parents commenting about how they've been to see the GP or health visitor, perhaps, and asking for advice about, you know, a health issue for their child, and it's just so often dismissed, really, as you know, being attributed to because the child's got Down syndrome. It's what one should expect. You know, one particular example that arises a lot is in our community about we did a survey, somewhat over three quarters of our children will suffer from constipation at some stage, and so many of the parents are reporting that the pediatrician or the doctors just saying, Well, it's because babies, you know, little ones, got down syndrome, that's to be expected, and they're not getting necessarily the right care and support. So there's another initiative we have. We have a toilet training program pants for school, and we work with continents specialist who, whilst also, you know, also covers constipation, because it is such a big issue, you know. And at its worst, a few years ago, a young man with Down syndrome died from constipation. Terri, outrageous, utterly, you know, awful. So it is something, you know, and I've certainly experienced it with Tom I can remember about, you know, his gait, the way he walked. I remember sort of speaking to someone, and they go, Well, it's because he's got Down syndrome. I thought, really, you know, what, if he didn't have Down syndrome, what would you be saying to me? Then, you know, in another time, speaking, trying to get an appointment for an endocrinologist, because Tom's quite short, and again, I was just not back, you know. Well, it's what we expect for people with Down syndrome. So, you know, we do encourage and try to empower our parents by asking that very question, what would you be saying if my child didn't have Down syndrome? What would the treatment be? Yeah, because, you know, I know, as a parent, you can often feel, you know, lacking in confidence. When you go to see a specialist and they just say, Well, that's because they've got Down syndrome. You go, Oh, all right, really, um, and if you don't know any differently, and you haven't got sort of statistics or evidence, you just accept things. So it's, it's difficult, but sadly, you know, is a major health inequality for our community. And certainly, you know, the statistics sadly prove that people with learning disabilities do die significantly younger than those without. You know, from often preventable health issues.

 

Gill Phillips  33:38

From the work that I'm doing  ...so, we were talking before we started about the work that I'm very proud of. I'm really enjoying that I'm doing with Midlands Partnership Foundation Trust at the moment. So we are crowdsourcing scenarios. NICU and I met at the maternity event where I think Whose Shoes is better known, obviously more established. But we're now crowdsourcing 300 new scenarios and 50 odd poems around children and families, joining things up better, which is a huge issue all the so silo thinking, mental health issues, care experienced children, so some people will have been following that they're the modules that we've already completed and finishing up now, and working even more closely with my good friend Yvonne Newbold, children with special educational needs, including disability, and also, we're trying to cover neurodiversity. So it's an absolutely enormous topic, but I think you know, it's quite rewarding to hear that we're picking up quite a few of the issues that you've mentioned going along, and hopefully that will all help spark these in depth conversations, really, about how it is for families and their day to day experience and how. Care professionals can get what I call the lemon light bulb moments where they suddenly see, oh my goodness, that language that I used, or that way I just pinged an email off to somebody else wasn't perhaps the most helpful thing I could have done at that point. 

 

Nicola Enoch  35:16

That's it. Yeah, and I think it is simple things that can make big changes. I think our parents are often overwhelmed. You know, certainly for a child with Down syndrome, you know, the chances are they may well have extra health complications and needs and parents, so value the healthcare professionals who just take that bit of time. Also, you know, to ask about the parent, how they're doing, yes, you know, genuine post, yes. And time post, parents, you know, I think peer support is huge, you know, will sometimes reach parents of, I don't know, a six year old who's almost never connected with another family because they don't have a local support group, you know. And they can come into our sort of community, yep. And benefits so much, you know, by sort of being educated and informed around things, but also not feeling so alone all the time. And I think you know often when we do training with healthcare professionals and, you know, students and so on, it is, you know, empower our parents. You can give your knowledge, but you know, signpost them to organizations, to charities, such, you know, as their local support groups, but the national ones you know ourselves, who are able to also provide real, meaningful support, and so on. But yeah, back to healthcare professionals. You know, see the individual beyond the the label beyond the diagnosis, see, the family, oh, hugely makes such a difference, such difference. So

 

Gill Phillips  36:50

I think I mentioned Yvonne Newbold in passing, and I see a big similarity. And I think you've built a fabulous community. Yvonne has built a fabulous community about a specific group of children with needs that involve anxiety and perhaps really challenging behavior, absolute lifeline to those parents. And I think those informal groups, those informal communities, need all the support that they can, which is why I chose your charity, Nico lad syndrome UK, to feature on this special podcast film. Yes, because I see big charities sometimes that have a possibility of complacency, shall we say, right? Whereby you know if you were going to leave a legacy and a will, there are the big names that jump out. But I think a big part of what I'm trying to do through the podcast is to highlight the smaller people who are doing amazing work, and Newbold hope Down syndrome, UK, definitely. Thank you. You're there. And I was going to say in terms of our new scenarios, we've got a scenario called Golden people, and it's around the people that you find that do take that extra bit of trouble, go the extra mile, see the person open a door for you somewhere. So I'd say that the people that believed in Tom with his fitness and gave him a chance, that's it. And you know you and Yvonne, you know, because you've opened those doors to so many parents. So, you know, I think for the people listening, any support that you can give to these small charities, generally and specifically, we're talking today about Down syndrome, UK, so I think what I also see, Nicola, which amazes me, is your energy and your presence. So only last week, there you were popping up on midwifery hour, telling your story, reaching new midwives, reaching new student midwives. All of those sessions are recorded so that people can can see them afterwards. Everything that you've mentioned today, you kind of set up an initiative around so the problem with constipation, and suddenly you've got pants for school, and I see you popping up in perhaps parliament, or I just think you've got this amazing presence that I think Tom has been such a gift to the world by having Down syndrome, because your experience of Telling that story, of being so open about how you felt originally and the work that you're doing now is kind of the biggest contribution that you can make for that community. Thank you.

 

Nicola Enoch  39:31

Well, as I say, I came from the absolute depths of despair, yeah, to being you cannot find a more proud parent, And I can feel it, yeah, it's lovely.  I mean, it's just frustration, and, you know, has driven me to really do a lot of the work. As I say, I just feel parents deserve better, and people with Down syndrome do. And you know, today's Well, Down Syndrome Day, and certainly for us as a charity, we're all about celebrating. That's our sort of big message. Research through well Down Syndrome Day. And if anyone can lend any support in any way, please do as you say. We're a small charity, but we like to feel we have a very practical positive impact. You know that people attend our training, they read our resources, they join our groups, and I hope the impacts pretty immediate and but long lasting. So yes.

 

Gill Phillips  40:22

So thank you so much, Nicola. We'll include some links in the show notes, so you'll be able to find out more about Nico and the work that she does by looking looking in the supporting information for the podcast. So huge. thanks for coming. 

 

Nicola Enoch  40:37

My pleasure. Thank you and happy well Down Syndrome Day to everyone. Thanks. Gill 

 

Gill Phillips  40:41

Happy World Down Syndrome, Day to everyone. Globally.!Thank you.

 

Gill Phillips  40:47

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 were 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.