All Things Autism – Ginny Bowbrick

[Speaker 1] (0:00 - 1:09) Hi, this is Anna Kennedy and we're talking all things autism. We're at Covent Garden and we're on women's radio station, which is supporting women's well-being. My guest today is Jeannie Bowbrick and she's been a doctor for 30 years and is a consultant vascular surgeon at Medway Maritime Hospital in Kent. She has three sons aged 15, 12 and 12. The twins are autistic with severe learning disabilities. Alongside her medical career, her other professional interests are medical education of junior doctors and promoting understanding of autism and learning disabilities amongst health care professionals. Hello, Jeannie. Hello. Hi, thanks for coming along today. So before we go into all the different things that you want to talk to me about your sons, who is Jeannie? Where were you born? Who are you? Oh, well, I am, I'm a doctor, I'm a consultant vascular surgeon in Kent. I was born in Guildford in Surrey. I haven't really travelled that far and I went up to medical school in London, went to Barts, trained there, trained around the southeast of England and sort of graduated to being in Kent. Did you always want to sort of go into that line of work, if you like? Being a doctor? [Speaker 2] (1:09 - 1:10) No, no, no. [Speaker 1] (1:10 - 7:26) I only decided I wanted to be a doctor when I was in the equivalent of sort of year, post 16, year 12. I'd wanted to be a biology teacher before then. Oh, did you? And sort of my, one of the tutors in the sixth form said, well, you're going to do well. Have you thought about medicine? I was like, no. Look, went and did a work experience and really, you know, really enjoyed it and thought this is where I want to be. But I didn't know about being a surgeon. I'm the first doctor in my family. Wow. And when I went to medical school, I sort of looked at every specialty and the first time I went into theatre and scrubbed up and was assisting a registrar doing appendix, it was just like, this is where I want to be. I want to be in theatre. I want to be operating. It was just knowing that as well as the atmosphere and the technical side and everything that I wanted to do. Okay. I remember when I was a kid, I wanted to be a sheriff. I used to like getting dressed up in the sheriff's outfit. Yeah, really. I think the less I say about that, the better really. So tell me a little bit about a campaign that you are embedding within the NHS. What is that all about? So we're embedding it in our trust first, that's Medibon Maritime Hospital. And I hope that once we've embedded it and ironed out everything that would be able to spread it a bit more, a bit wider within other trusts. And it's to promote understanding of autism and learning disabilities amongst healthcare professionals, not just doctors, nurses, everyone within the NHS. And we want to include GP practices as well. So it's not just going to be hospital based. Okay. And you, before we sort of go into that as well, I'm just thinking now, you've gone into the field of autism and embedding it because you have two sons. I have two sons. Yeah. Well, I've got three sons, not to forget the eldest one. It's very easy when you've got disabled children to forget the other ones. Siblings always seem to get forgotten, but yes, I've got three boys, Jamie, Josh and Alex, and 15, 12 and 12. And the twins, Josh and Alex are identical twins. They were diagnosed with autism when they were three. So quite early on then. They were. And as the time went on, obviously you get the diagnosis. They tell you, you can't tell you how severe it's going to be and what other problems and as the years roll on, extra bits get added, developmental delay, behavioral problems, speech delay, everything gets added onto it. And although they're identical twins, their autism is totally, the way they present very different. How was it? How's that then? Well, Alex, his speech is very limited. Okay. Although he makes himself, he doesn't, neither of the twins use Makaton or they're not really very much into pecs either. Okay. But they make their wishes known. Alex by direct actions or hand over hand, or he'll just say the word of what he wants. Yeah. Joshua is a bit more verbal. Right. But in their behavioral problems. So with Alex, with behavioral problems, he'll flop to the floor. He is obviously hypersensitive to sound, put his hands over his ears a lot. With Joshua, he is a bit more communicative. He has a very, he has a really good relationship with Jamie. They're a bit Mike. He's a bit like Jamie sort of mini me sometimes they're talking and I just have no idea what they're talking about, but they have this very close relationship. And he's sort of interested, different. He's into Mario. Alex is still into his Thomas a tank engine train. So good old Thomas. But Joshua had more of the behavioral problems. So spitting, biting, headbanging, those sorts of things. So sort of different issues between them. So how did all three of them get on together? Jamie and Joshua are always very close. And Alex, because he much prefers to be on his own, wouldn't be so in so much playing with Jamie and Joshua. But the twins, they look out for each other. And even if they're playing, they'll look over to see if the other one's there. Although, unfortunately, then Alex would become Joshua's target when he would have behavioral problems. So you suddenly have to split them up because Alex would always be Joshua's target. And Alex wouldn't defend himself. And I think that's because he had a problem with identity, you know, when you have kids and you say to them, look in the mirror, who's looking, who is it? I remember putting Alex in front of the mirror going, who's that? And he went, Josh, this interesting, not quite sure of the identity, who was looking at. But Jamie, beyond his years knows that he will be looking after the boys when I'm around anymore, he'll be their advocate. I was always very careful when he was younger, not to try and do a pad or something. Can you get me a packet of pads or can you do something? But, you know, I must remember this conversation when he was about eight, walking back from school going, Mommy, when you're dead, I was like, thanks very much. When you're dead, I'll look after the boys. Okay, that's good. And I said to him, you'll have your own, you'll have your own life. Yeah, but you'll need to be there for them. Just need to keep an eye out. And that's what I say to Patrick about Angela, because obviously, I know Patrick's obviously got his own difficulties, but I'll say wherever he is, just go and check on him, make sure he's clean, check his body, all that sort of thing. You know, it's just how you think and you shouldn't have to think like that. But you do when it's just because you worry. So talk to me a little bit more about the Not Less campaign. What is it you want to achieve with it? For many years, I've wanted to try and do something to sort of increase awareness and or understanding. When I'd be in the horrified is the wrong word, but surprised at some of the things that would be said or the reactions or the lack of knowledge, it's better way of putting it lack of knowledge, because no one goes to work with the intention of health care of not trying, not wanting to care, not wanting to look after their patients. That's not what anyone wants to do. But it's if you haven't got the knowledge, then you can't, you can't help. And I'd be sort of saying to people things like this isn't true, this isn't right. You know, they do feel pain, the same do they do understand. And I watch the panorama program about Walton Hall. And it was so hard to watch. That was horrendous. I mean, even now it makes me feel quite emotional. [Speaker 2] (7:26 - 7:26) Yeah. [Speaker 1] (7:26 - 13:59) You know, you could almost see you would worry that that would be somewhere where your children may go to and watching that abuse. And I just thought this, this, this is awful. But more so, Pete, the majority of 99.9% of people are not going to be doing this. And yet somehow it the onus is on us to look after our patients and to reassure our patients and their families, as much as anything that we do care. And that was why I wanted to do it. So it's as much it's for us to understand to try and educate, but also to give something back to the families and the patients to say that we want to try. So obviously, you're very passionate about the campaign. How did you engage other people who you work with to be part of it? What did you do? Well, that evening when I'd had this sort of idea and sort of flight of ideas about all the things I wanted to do, I emailed my chief executive, James Devine, at the hospital and said, I want to do this. And I want Medway to sort of want our trust to lead on this and have it in our trust and hopefully take it wider. Is this, I actually wrote in there, is this a mad idea? Yeah. And the next morning, like the first thing he said, no, this is great. We must do this. The panorama was horrendous. And, you know, the onus isn't asked, as you say, to reassure people. And he sort of copied in the head of communications and said, we're going to do this. So, you know, I had, therefore, I had my chief executive support and head of communications and we met. And so the communications department has been brilliant. And with bits, I mean, I'm a doctor. I don't know about all these communications type things. So that's been excellent for them helping me and what to say and what to do. And I did the grand round. So grand round is the lunchtime meeting where you get all your colleagues to come. And I asked the chief executive to come and I asked my medical director to come and it was one of the best attended grand rounds of this year to discuss what I wanted to do. And I did it because I wanted to get feedback from them as to whether I thought it was a good idea. Any ideas and support. How did you feel before you went in? Were you nervous? So nervous, because although I've been at the trust for about I've been a consultant for 15 years, I've been there a long time and a lot of my colleagues are personal friends. But only a few really knew about the boys. You know, it's personal. You don't have to talk about it and tell everyone. So putting pictures of the boys up there and saying quite openly the issues that they had was quite hard. It was quite an emotional process. Okay. So obviously you shared it with them. Was everybody on board straight away or did you have to convince certain people or? Oh, brilliant at work. So much feedback and people actually opening up about their own children that they might not have done before. So it was some people who didn't completely understand the role of the learning disability nurse and an offer of help from the simulation department to create some extra training within simulation. That's very, very positive. That's what happened when we did awareness raising with the first responders and we took the autism reality experience there. So many of the police ambulance service, fire brigade, people who were working together had not shared that they've got sons or daughters or relatives on the spectrum. And you could see that once they start talking to each other, like almost like this big weight had been lifted, that they were able to share it. There was nothing to be ashamed of, you know, all that sort of thing. So that was an amazing day that day. We had about 135, 140 people came. We spent the whole day with them. And I was just chatting to you before when we're having coffee, we've been talking to a youth offenders prison, very near to where you work about doing awareness raising there. So, you know, it's just about working with people that who are working with our children and our adults, just to give them a little bit more information, even something small. Like, you know, when you're talking to them, just take a little bit longer, you know, for them to process the information, talk about sensory processing difficulties, all those different things that come together that present themselves with autism. So we're going to be chatting a little bit further on. If you'd like to be one of my speakers at my all things autism show, please contact me at www.annaKennedyOnline.com or you can contact me via Twitter at AnnaKennedyOne, or you can contact me on Instagram at AnnaKennedy OBE or on Facebook, AnnaKennedyOnline. Thank you. Welcome to Women's Radio Station. I'm Sarah Louise Ryan and welcome to Love Lessons Live on Women's Radio Station. Hello and welcome to Future Classic Women Awards with me, Stefania Passamonte, on Women's Radio Station. Hello and welcome to June is Listening. Hi, this is Anna Kennedy and we're at Women's Radio Station supporting women's wellbeing and we're talking all things autism. Women, the possibilities are endless. That's what makes us different. Hi, I'm Lauren Mishcon. I'm a birth doula and mum of three and I'm passionate about supporting women to have empowering and positive birth experiences. Please join me for my brand new show from tummy to mummy here on Women's Radio Station. Every week I'll be here with an expert guest talking about women's reproductive health, everything fertility, pregnancy, birth and baby related right through to the menopause and beyond. Please join us for an informative and fun hour. Hello, my name is Ingrid Marsh on Women's Radio Station and coming soon is the Radical Wellbeing Show. To help support women's wellbeing, each show I share the airwaves with all their women like me and you doing extraordinary things. Women who overcome huge obstacles in their lives who are now here with me to empower you. On the Radical Wellbeing Show, you'll be inspired to kick away the roadblocks and live your life to the fullest. If you're ready to get radical about your wellbeing then this is the show for you. Hi, I'm Hazel Butfield, a blogger, book lover and mental health advocate and you can listen to my show Get Booked here at Women's Radio Station daily at 5am and 5pm. Throughout my shows we'll talk about the books I've read, new releases, chapter authors, publishers and book enthusiasts all with a theme and aim of supporting women's emotional wellbeing. If you have a book to tell us about, get in touch at presenters at womensradiostation.com. Join me on my show and share my love of books and writing. [Speaker 2] (14:00 - 14:30) Hi, I'm Valentina Barbachi and I'm the executive director of Media Matters for Women. We're a registered charity operating in Sierra Leone and the Democratic Republic of Congo and we produce and share podcasts via Bluetooth and mobile phones focusing specifically on women and girls excluded from information due to extreme poverty. We empower those living in rural areas with media that transforms how they access, own and share information. To find out more and be part of this movement, come check out our website at mediamattersforwomen.org. [Speaker 1] (15:00 - 16:35) Hello, this is Anna Kennedy. We're talking all things autism. We're supporting women's wellbeing and my guest today is Ginny Boberick. Before I go over to Ginny, I just want to remind you about autism's Got Talent, the road show not long to go, just a few weeks and it's going to be on October the 12th at the Winston Churchill Theatre in Reislip where autistic children and adults that have got wow factor talent will be showcasing what they can do. What a show you're going to be in for. It's really exciting and we've just had confirmed that. Remember Janine that used to be in EastEnders? She's coming along to support the show. She's been a great support to the charity and she's coming along to see what the show is all about. So if you would like to book tickets, you can book tickets at the box office at the Winston Churchill Theatre and tickets will go really, really quickly. They're already being sold. So as soon as the families of the actual people that are going to be showcasing their talent get to hear that they're going to be singing, dancing or whatever it is that they're going to be doing, they will want to come along. So please, if you want to be inspired, come along to Autism's Got Talent, the road show. So Ginny, Ginny is currently embedding a campaign in her own trust with their support to promote understanding of autism and learning disabilities, which she hopes will be taken up by other trusts in due course. So tell me a little bit more. So you did your round robin. Is it round robin? Round round. It's a bit like a round robin. So speaking to your colleagues. So what was the next step? Well, the next step was I'd already started a page on Twitter. [Speaker 2] (16:36 - 16:36) Okay. [Speaker 1] (16:36 - 18:23) I think social media is a very powerful tool when you're creating a campaign like this. It can be a double edged sword, as we all know. But for me, it was the whole ethos of the campaign is to care, to listen, to understand. Okay. With all the reports that have come out like Kip Alder and Leda, the one thing that comes back from them is that there's inequality in care and decision making and the families and patients don't feel listened to. Okay. So the three sort of words to sum it up was to care, listen and understand. Right. So went on to Twitter and there I was able to get feedback from the actually autistic community. Okay. With that hashtag. And one of the things that came out of it was that I had to confront my own unconscious bias as a parent. Okay. And of having to change and accept different language, you know, I'd always thought you said someone with autism, but actually some people like to be autistic adult and use that and, and I'd use the puzzle piece. Yep. And I thought the puzzle piece was a widely accepted symbol. And I'd got my got Joshie does lovey coloring, got him to color it in and we'd adapted that. And the feedback was we don't like this. And, and so I said, okay, you don't like it. Tell me what you do want. Tell me what you do like. I want to listen. That's what this is about. Therefore we will change. And so it was going to be called the puzzle piece campaign. Right. Which it isn't anymore. Okay. I'm going to call it the not less than campaign. After Temple Grandin said, I'm different, not less. And they can find you on Twitter. They can find us on Twitter at campaign piece. Okay. Still trying to decide on the logo, right? Because initially it had been a puzzle piece and that's gone out the window. And we're hoping that we've got a graphic designer who will help us make a suitable logo. We may even put that up as a little vote. [Speaker 2] (18:24 - 18:24) Yeah. [Speaker 1] (18:24 - 43:59) A vote for people to say what they want. Yeah. I mean, you know, you can't please everyone, but I want to try and please as many people as possible. Yeah. And to listen. And, and I started some threads to say, tell me what as healthcare professionals we can do. I was really interested by the things that people said. One of the things for me, as I mentioned before, is about the issue of pain. And there was some heartbreaking comments actually. Someone saying that I've been told all my life that the sound that the noise that I hear and I find painful is normal. So why would I complain about other pain or, you know, I was told that my symptoms didn't fit with what I was presenting with. I couldn't possibly have this because I wasn't in enough pain, but I don't know how to express pain. And, and hearing all these things that people were saying, as well as if I have something written down, it's a lot easier because, and I can't talk on the telephone because I miss the social cues. And a lot of what we do is on telephone now because, you know, there's not much time in outpatients that we've got pressure on appointments. So we'll phone people with results, but actually that's not a good idea. So I was able to get these sort of quotes and bullet points and things I'll be able to use within the campaign to try and include that feedback within it. Okay. So what do you want to get out of the campaign at the end? Have you got like an end vision? I think an end vision for me would be, well, the idea is there'll be a logo, there'll be like a, not a pledge, but a, an undertaking, which will be in the front of the hospital. We're certainly at Medway. We're going to have this, an undertaking that we are going to pledge equality and care, listen, and involve people in that decision making and not make assumptions about people. A lot of assumptions will be made about people with learning disabilities and the medical director, chief executive and head of nursing have agreed to sign this. So we go up in a prominent place for people to see and on each ward to show that that's what we want to do. So it's to reassure our patients, reassure the families, try and increase the awareness. There is the mandatory training coming in, which will be great. This is to go alongside it. When does that come into place? Do we know yet? I don't know when that's, we do have a lot of mandatory training. And so, you know, this is just as an alongside of it with more visuals. There was a campaign and you may have heard of the NHS rainbow badge campaign. It's been really popular. And it's, you know, people wear a badge, they sign a pledge, they say we're going to be understanding for LGBT issues. And so this is sort of a similar type of campaign. And I did contact the people behind that campaign to ensure that I wouldn't upset them. And they were very gracious and said, no, it's not all right. You know, it's fine. You can do this. So it's a similar type of campaign to give that visible symbol. And not only that, that people will read these sort of, this is how, you know, things about language, how do I dress people? And what are the do's and don'ts? The problem is that it's easy to blame doctors and say, why don't they know, you know, you've been trained, you've been educated, but actually, I looked through the syllabus syllabi of the postgraduate exams. And then the only thing that comes up for learning disabilities is consent and capacity. And it's more than capacity, it's more than consent. There's so much more to it. And it's going to change because the GMC have brought out a new framework, general, GPCs, I can't remember. But it's a new framework of education and different domains. And one domain is about safeguarding vulnerable people. So it will change in time, but we've sort of, we've got to catch up and we've got to educate people. I think sometimes as well as people that are afraid to ask. So say, for example, like Angelo's quite profoundly affected and he's got very minimal speech and quite a significant sensory processing edition. So we went for a blood test and you know, like, you can feel it in yourself thinking, oh, how's he going to cope with this and all the rest of it? But I went along and I just went to the reception. I said, look, this is my son. He hasn't had a blood test since he was a child. And the last experience he had wasn't very pleasant. Is there any chance rather than sitting with for all these people to get through these anxiety levels and he rocks and he, you know, it does all these sort of things that is what I call Angelo, how it really presents itself. So any chance you could put us in a private room or a quieter area where maybe you could be seen a little bit quicker. And you know what, they were great. They just said, right, they put him right to the front. Not that I expected him to be at the front, but they did put him at the front. They sat with him and they were so good. And it just went really, really well. And they couldn't get the blood out the first time. So the second time they did it and they did it with a butterfly needle. And he was, cause he was watching what they were doing. Now, if someone had said to me, Angelo's going to be watching them do it. I would have said, no, it's not happening. You know, but he, cause he could see what was going on. He was just watching what they were doing and they managed to get the blood from him. So, you know, I always say ask, even like when you go to the dentist, I took a social story with me for Angelo saying, you know, this is what's going to happen. Angelo trying to make it as easy as possible for him. They're stressful for the staff that weren't from, and the actual dentist said, that story is great. Can I have it? So I said, I'll take Angelo's name off it. So that's what they did. And she's using it now. So I think if you don't ask sometimes, you don't get. So I think if you, if you go into the hospital or to your GP, it really helps if you tell us beforehand, cause we do want to help. And if you say, actually, um, I need a double appointment for example, I've been trying to, you know, I've been one of the, one of the feedback, one of the bits of feedback I had was that it takes a long time to build up the courage to make an appointment. And then I'm told I've only got 10 minutes. Well, book a double appointment. Or if you've got a hospital appointment, tell them beforehand, but, um, you know, someone phoned my secretary and said, I would try and put them forward, you know, put them at the front. I can have a beginning one. I can have the one at the end of the day. I was only talking to my registrar yesterday about this. And he said that, um, he saw someone in clinic and he didn't realize they were recording the conversation. And he said, why are you recording this conversation? And it was only then that the patient said, but I'm autistic and it really helps me. And if you need to do that, say beforehand, please, may I record this conversation because it helps me. That's fine. Or, you know, if you want everything in written format, it will come in written format. So what I would say is say as much beforehand as possible to make sure that we know because we won't be able to guess and we won't necessarily have seen your letter before you are sitting in front of us in the clinic. So just let us have that information ahead and we will do our best to try and accommodate things as much as possible. And it's not only people who on the spectrum, my dad's 88 and he had to go to hospital and he asked if he could record the conversation because his memory is not as good as it was. And they just were fine with it. That's absolutely fine. So I always say, if you don't ask, you don't get it. And if you ask, that will be fine, but it's just, when you haven't been asked, it just, yeah, it's a bit unnerving. Yeah, I can, I can totally get that. So again, um, if people want to look up, um, on Twitter about the campaign, it's at campaign piece. Um, we're going to talk about a little bit later on in the next part. And how are you going to embed this in your trust? That's okay with you. Um, and, um, also what you've learned as a parent developing this campaign, I suppose, you know, go navigating through it, thinking, Oh, would this have helped me or would it help my sons and all this sort of thing? It's just, um, no, it's really interesting. I'm really interested to see how it's going to progress as well. And hopefully other hospitals will take it on board because that's what we want. Isn't it really? Well, that's the hope that, that, that we can spread it further afield. And that's where the learning disability nurses, I'm hoping we'll be able to embed that in their own trust further afield. Okay. Thank you. So if anyone's interested and like to be one of my guests on the show, please contact me on www.annakennedyonline.com or you can contact me on Twitter at Anna Kennedy one, Anna Kennedy OBE on Instagram or Anna Kennedy online on Facebook. There's lots of information that I share on social media every morning when I get up or even in the middle of the night when my son's not sleeping, um, anything that I find of interest, please, um, just take a look and, you know, I don't endorse anything as long unless it's something that I'm actually doing myself. So I just share it out of interest. So if people are interested, please check out. It could be about anything to do with education, social care, um, just whatever that I might find a little bit interesting that I think other people are going to be interested in. You can also check on out on our charity website. We've got workshops that are happening, um, starting next week, which I'll tell you a little bit more about on women's radio station, which is supporting women's wellbeing. Welcome to the women's radio station, supporting women's wellbeing. Women's radio station is all about diversity from opinions, career, ethnicity, education, and most importantly, women's wellbeing. We aim to celebrate the individuality of every woman everywhere, providing opportunities and the platform for your voice. Visit our website, women'sradiostation.com for more information. I'm Tamina Zaman, founder of Empower and Enrich. When it comes to money, do you clam up or get confused? Do you wish you could save more money or are you hoping you have enough for retirement? You are not alone. Many women want to be smarter with their cash, but just don't know where to start. At empowerandenrich.org you will find a host of options to help you take charge of your finances and learn how to put your money to work for you in an easy, affordable way. Get in touch with me at empowerandenrich.org and let's change your future together. Hello, my name is Natasha Ann Callaha. Welcome to you lovely lady listeners of your very own women's radio station. Over the coming months, I'll be doing a survey and big brand coffee shops interviewing customers asking why they like to drink coffee and if they would like to give us a health tip for our listeners. The most shared and liked post will be the winner of a prize. Stay tuned for further details. Hi, I'm Carolyn Van Biers. Please join me for a brand new show here on women's radio station. It's Mother's Hour. If like me, you're a mum juggling far too many balls and dropping most of them, this is definitely the show for you. We'll examine the highs and lows of motherhood and make sure you laugh out loud as we take on this challenging role together. With spoonfuls of advice, incredible stories, it will be refreshing, honest and funny look at being a mum. Are you struggling with money? Turn to us as a national charity helping people struggling to make ends meet. Job loss, illness or bereavement can cause a real whether you're thinking of having a baby, trying to get out of an unhappy relationship or just unsure what benefits you may be entitled to, we can help. Visit turn to us.org.uk. Welcome to the women's radio station supporting women's well-being. Women's radio station can give voice to your brand with a wide range of sponsorship opportunities, including individual programs. We can tailor your experience for you. For more information on how you can sponsor a show go to womensradiostation.com. Women's radio station supporting women's well-being. Hello, this is Anna Kennedy. We're talking all things autism and we are supporting women's well-being. I just wanted to let you know about the workshops that I spoke about previously. So Paul Isaacs who's one of my consultants and also on the autism spectrum. He's going to be talking about next week on the 25th of September autism and the system of sensing 27th of November autism and mental health 22nd of January autism and employment which is a really hot topic at the minute and Wednesday 29th of April he's going to be doing autism and mindfulness. Lots more information about each of the workshops. They're only 15 pounds 10 o'clock till 2 30 and you also get lunch. If you want to come along it's in Uxbridge at our charity office. So all the information is on the charity website and very very interesting workshops. So over to Ginny. So Ginny is one of my guests today and we are going to be talking about, if you don't mind me saying, at one point you were a single parent and obviously having three boys. You must have been juggling a lot working and looking after the boys. How did you cope? People would say to you how do you cope and the answer is always because I have to and I expect you can understand that totally. There isn't any choice. It's almost like when I was pregnant and had the scan and there's the twins how are you going to cope with that? Well just because I have to. But any twins in your family sort of? No all my children were from IVF which was a surprising thing about the twins being identical and they don't tell you that bit that they're more at risk of splitting. What did you think about? Wow twins. I wasn't really quite sure how to take it so desperately wanted to be pregnant and I'm finding I was having twins. It would seem ungrateful not to have been over the moon but it was overwhelming and to be fair when they were first born. I can't remember the first five or six weeks of their lives. They were born at the end of October and then I found myself in December and I don't know what happened to November 2006. It disappeared amongst feeds and winding and changing and things. Being a single mother and having the three children I just built up a network of people around me to help make. That is even extended family isn't it that can support you if you're lucky enough? My family were obviously supportive but living further away. Initially they went to nursery then I had a child mind and then eventually I had a nanny because it became easier to manage for them in my own home. But then four years ago, nearly four years ago I came to the it was the most difficult decision of my whole life I think and one that even now makes me well up to tears and will frequently cry about that I couldn't look after them at home anymore. It was Jamie who the twins were on a night of respite and he was sitting on the lounge floor going mommy you know when the twins aren't here my life is so much better because he was having attention from me. He could play with his toys he could watch on television what he wanted and there was this realization that for my twins they'll always need care 24-7. There'll always be a safety net for them and for Jamie there is no safety net and he wasn't getting any of my attention he wasn't getting any help with his school work and if he failed that was his only chance and then there's no safety net for him with life after school and exams and things so I made that decision that I couldn't look after the twins anymore I'd got to as far as I could and you know I felt like I was more the carer than their mother and I see the carers would come and I had some respite at the weekend every weekend they'd take them out for six hours on a Saturday and six hours on a Sunday and they would take them out and have fun with them and then come back to me with all the dirty washing and the empty sandwich boxes and everything and it was just like well I'm not having fun with my children anymore and I want to have fun and now that they are they're in a school for learning disabilities autism it's got a waking day curriculum 52-week residential school okay and I need to where you live it's about an hour and a half drive it's the second school they went to they went to another school that was an hour and a half away there aren't any around nearby and they made so much progress and I go and I have fun with them yeah and they come to stand I have fun and I'm their mom and and it's still I get to me just before like I'm due a visit this weekend yeah I start to get a bit more tearful and missing them and looking at the picture of my phone and watching videos and you know I get to talk to them on the phone but it's not the same no no um because Alex only wants to go run back and watch Thomas okay that sort of thing um but and it was a really hard decision to make um probably a decision that changed me yeah forever but I can see that we all benefited from the end I've spoken to quite a few parents where they found it so difficult in the end some parents and their kids go to school Monday to Friday then they come home at the weekend um one of my volunteers you know she just got to the stage where she just couldn't cope anymore she's a bit like what you were saying but her son used to attack her so she was just she said I was just living I was co-existing it was just like it just you know it was just so difficult but now he's in a in a place where she feels that she can go and see him he's having fun she can bring him back home every few weeks and she just said her life is so different now but there is that guilt there all the time that she feels um but the thing is you know I know Angelo's 26 now and I know I'm not going to be able to look after him you know he's as I said probably sounds like one of your twins really yeah um but um and I'm thinking ahead now I'm getting older and it is difficult because you always got that worry and you watch those programs on television and it just like thinks oh you know what if you just think what if something like that's going to happen to him he's not going to be able to tell you all those sort of things but you have to like think right what's for my well-being what's for his well-being type of thing so um yeah so it is tough and I always say take it one day at time some days good some days not so good so yeah so it's um yeah so let's go back to the campaign before we start getting emotional the pair of us so in your 30 years as a doctor have you seen a change in how autistic and learning disability patients are treated by health care professionals and we've got a good friend um Paula haven't we that's really fighting hard because of her son Oliver she's very inspirational and she's just like really on it and it's she's just making it a lifelong campaign at the moment isn't she so um I just can't even imagine how much she must be feeling um but anyway so just talk to me a little bit about um how you think you know things have changed in the last 30 years in my medical training I don't remember really being taught about autism let alone any learning disability okay um and nor for capacity or consent because when I first qualified if someone couldn't sign their consent you asked their relative to sign that consent um so that has totally changed now with it being sort of um having advocates having best interest meetings and how you how you come to that that point um so okay then so you're talking about um how you get to this point so what you're what you're what you say what have you seen that's a big change is there anything that's a big change that's happening where you're working at the moment if you notice anything different as well because of you mentioning about your sons um that people have been able to open up themselves okay and tell me about their relatives um sons daughters what sharing experiences people that they know and share those experiences and being more open I think one of the things that was the hardest to say at the grand round when I stood up and said was um that of my having my three children that the the eldest will live for 25 years longer than my twins for no other reason other than the fact that they have severe learning disabilities and that felt really hard to say and that was at the point during the grand round when I world up and actually had some tears in my eyes I can't get my head around that you know I don't what is the reason that why do we know why why why is why is they look to see I mean the natural thought is well if someone's got learning disability then they've got um other what we call comorbidities other health issues right and the last leader report looked at that and said no they haven't whether they've got one two or three um other health issues it makes no difference to um their life expectancy okay and it does come down to this you know equality of care um and decision making um that causes this it's if someone yeah how do we judge someone's quality of of life and that was one of the things that I discussed in the grand round we we we can look at someone's quality of life only based on our own quality of life okay but the fact that Josh um Josh and Alex will never have to worry about a mortgage relationships anything at all actually who's got the better quality of life yeah is it us worrying about these everyday things or is it Josh and Alex you don't have to worry about it I'd say that perhaps they're going to be happier in some respects and I they're always going off on trips on visits they're here they're in everywhere Joshua has taken to horse riding and hopefully they'll have supported job with horse riding they have a great life so actual fact their quality of life's brilliant I can't keep up with them so where they are at the minute are they there till the 251919 so you've been thinking ahead where you would like them to go because that's another thing that's the where are they going to go next type of thing well it only feels like I went through two um send tribunals to keep them out don't you just love a tribunal yeah I went through the first tribunal to get them to the first school they went to and then the second tribunal they um with the local authority they did move schools but at least they didn't go back to a day school so that was is it long and drawn out the two tribunals have been long and drawn out so I haven't really got past that that was only a year ago okay I haven't quite planned yet next what's going to happen okay I'm still just relieved they are staying where they are yeah so many more years they got there so it'd be another six okay I've got plenty of time plenty of time yeah we were chatting work we've been you know before we're having a coffee and I was just thinking oh worrying about Angelo and where's he going to go who's going to look after him so you have to make these plans you have to put a trust in place Mencap do great um a trust that lots of information on there about how to set up a trust because you do worry about social services coming in taking your money taking your house you know and then your son sort of stuffed somewhere that's really horrendous so it's best to make plans as early as you possibly can so check out Mencap and just type in trusts and there's lots of information on there um just to remind you as well we've got the autism hero awards which is happening in November the judges last week had such a tough time reading all of the 135 nominations and they had to choose three finalists for each category um one of our ambassadors Casey Ainsworth looked at the final few yesterday and she said how do I choose how do I choose they're all winners but there's three finalists that are going to be happening for each of the categories and we're going to be announcing it very soon so keep a lookout on social media keep a lookout on Anna Kennedy online which is just remind you it's www.anna kennedy online and we'll be announcing the finalists and I'll be announcing and the only person I'm going to choose is a special recognition award which is really difficult last year it was Paula McGowan who I chose as my special recognition award because she just I just find her so inspiring that that lady and she's so lovely and we've become really good friends now um so this year um I had to choose somebody else so that'll be announced as well very very soon so again if you want to be a speaker just contact me on Anna Kennedy online thank you very much welcome to women's radio station I'm Sarah Louise Ryan and welcome to Love Lessons Live on women's radio station hello and welcome to future classic women awards with me hello and welcome to June May is listening hi this is Anna Kennedy and we're at women the possibilities are endless that's what makes us different hi I'm Lauren Mishcon I'm a birth doula and mum of three and I'm passionate about supporting women to have empowering and positive birth experiences please join me for my brand new show from tummy to mummy here on women's radio station every week I'll be here with an expert guest talking about women's reproductive health everything fertility pregnancy birth and baby related right through to the menopause and beyond please join us for an informative and fun hour hello my name is Ingrid Marsh on women's radio station and coming soon is the radical well-being show to help support women's well-being each show I share the airwaves with all their women like me and you doing extraordinary things women who have overcome huge obstacles in their lives who are here with me to empower you on radical well-being show you'll be inspired to kick away the roadblocks and live your life to the fullest if you're ready to get radical about your well-being then this is the show for you. Hi I'm Hazel Butterfield a blogger book lover and mental health advocate and you can listen to my show get booked here at women's radio station daily at 5am and 5pm throughout my shows we'll talk about the books I've read new releases chapter authors publishers and book enthusiasts all with a theme and aim of supporting women's emotional well-being if you have a book to tell us about get in touch at presenters at women's radio station.com join me on my show and share my love of books and writing. [Speaker 2] (44:00 - 44:29) Hi I'm Valentina Barbacci and I'm the executive director of Media Matters for Women we're a registered charity operating in Sierra Leone and the Democratic Republic of Congo and we produce and share podcasts via Bluetooth on mobile phones focusing specifically on women and girls excluded from information due to extreme poverty we empower those living in rural areas with media that transforms how they access own and share information to find out more and be part of this movement come check out our website at media mattersforwomen.org [Speaker 1] (44:32 - 59:58) you're listening to women's radio stations supporting women's well-being women's radio stations creating a global network for the empowerment of women and we want you to be involved join us on instagram and twitter at women's radio station that's women's radio stn or facebook women's radio station to keep up to date with all our exciting programs hello this is Anna Kennedy we're talking all things autism and we're looking after and supporting women's well-being um before i go over to Ginny um i was just chatting this morning to a few women that have been trolled on twitter and there's a lot of information out there at the moment in the media about social media about trolls and about the effects that it's happened i actually just recently watched um jesse from little mix i know it's got nothing to do with autism but the impact that it's had on her life you know she tried to take her own life um she was chatting her mom was just like so overwhelmed she said her daughter's just not the same since five years ago um and i was chatting to um women um you know who are moms who've got kids on the spectrum who are being trolled as well and it's really having an impact on them and the only you know it has happened to me a couple of times and i think the only thing that you can do is don't speak to them on twitter you know don't um give them the time i would say what i would do is because you're never going to be able to justify yourself to them so what i would say is either mute them or block them but just don't engage with them um because that that's what they want you to do but it was really sad to watch that um documentary and you know what i thought was really well put together and i think it should be shown in schools to young people just to show you know the effects that it can have on somebody um being trolled on social media so that's one of the negative aspects on social media it can be a really positive place and i've met so many great people on social media but just uh you know what's wrong with being nice to someone it's free sprinkle that stuff everywhere so jenny what's success going to look like to you for your campaign success for me will be first of all sort of locally that the trust i if i walk around my hospital i'm going to see people wearing my badges once we've actually decided the logo okay and that and that the parents and patients coming in will understand what that logo means so as well as engaging the trust we need to go out further to the patients and community in the community to say this is what we're doing and that's banned um the communications are sort of helping me with that because i wouldn't know where to start with publicizing that outside of the hospital you've got to get it in the right places as well because sometimes some people publicize things but people don't see it it's got to be in the right manner i wanted to ask you so say for example i was to come to your hospital with angela what's going to be different so if i was to come now obviously it's not in place so when i take him and everything's in place what's going to be different what's going to make it easier for me and less anxious well i hope that first of all you will see the certificates and the pledges and that we signed up to this and be reassured that that as a trust we want to tell you and angela that we are going to listen to what you say we're going to involve you in that decision making we are have tried that taken that extra step to try to understand the issues that are involved such as the pain and dispelling those myths you know they don't understand they don't feel pain they're all like rain man that sort of thing we want to dispel all of that okay um so that you'll you'll see that from our point of view it is going through um where the information packs that we've produced so sort of the do's and the don'ts okay um giving extra time you may have to draw diagrams you may have to write things down okay about the pain and how to understand that don't don't think that if they're not exhibiting any pain as you would expect that they're not in pain that the language you're hopefully you wouldn't be upset with any of the language that would be used and that they would feel more confident with the language that they're using when addressing you okay um so it's really just to try and go that extra step um in awareness understanding whichever you prefer that you felt that that would be transmitted to you okay and then once we've embedded it there i would hope that be able to take that um further into other trusts and become a bit more nationwide so is the the training going to filter down to even people in reception yes yeah because they put they're the first point of call really aren't they so we have trust-wide briefings okay um monthly and um i've asked and i've been told i can go to one of the trust-wide briefings to talk to everyone because obviously the ground round was a smaller although it felt like it was and it was quite a large audience but it'd go to a wider audience and it will put it on our our screensavers and have posters and all sorts of things like that to to be on the truck be within the trust to promote that understanding okay um and where to get the further information from it'll be easy to access on the website yes once we've developed the website yeah probably be on the trust website that we have our own intranet and we have our own public um website for the hospital okay by then at the moment i've got the twitter page at campaign piece um that's there that's sort of in its infancy right and starting starting um with that but okay once we're we're pushing this a bit further forward then we'll have more information so if somebody would like to ask you a question can they DM you on campaign piece they can on that or on my own twitter my own twitter has a bit more it's sort of about female surgeons and medical education what's that handle what's that oh no no no what i tweet on my twitter oh okay my own twitter is my own it's gini ab all right but it's the things that i tweet about autism and i tweet about learning disabilities and and all sorts but a lot about women in surgery um and and uh education matters and things like that because they're my other interests okay so um tell me a little bit about obviously a busy person juggling as what us mums do what do you do to relax what do you like to do i like to be busy i said to you earlier about my new um my new uh interest i'm going to be i've been accepted to be an ipsy phone line um advisory is great ipsy is brilliant and they really help me so to give something back i've i wanted to volunteer so i'm going to be going through the training for that right that's after just finishing a postgraduate certificate in medical education so i don't like to sit down doing nothing okay so take on the next project but when i'm not sort of sitting at my laptop in my study um i like to go to the gym so even when the boys were at home i would have um i'd set aside monday night and thursday night and have babysitters come for an hour yeah so that i could go to the gym and if i wasn't in the mood i made myself go out because i knew that would be my way of unwinding stress buster it is and you know have i like um les mils body combat my sister is a trainer for les mils and i've always said to her that she should have done it but she didn't have the confidence to do it but she's great she's got a few back problems at the minute but she just absolutely loves it and she said it's a great stressful stuff for her it's brilliant fun um and now i've got the on-demand so i can do it at home whenever i want but i also so have my own little gym area at home have a punch bag and battle ropes and things so i think physical exercise um is is so important for your mental well-being you can just escape and and just go into that and and um i i definitely notice that that if i'm not going to the gym i'm not exercising then then you know feel a bit sadder inside especially about the twins and things it helps me with that sort of side of balancing and the stress at work because it can be quite stressful vascular is quite a fast pace specialty um and more than 50 percent of it is emergency based okay so i've got to ask you a little bit about what you do because obviously you've been talking about the campaign but exactly what is it that you do day to day um well day to day it can be so many different things than like yesterday doing ward rounds seeing patients seeing emergency admissions seeing patients in clinic coming with um elective problems but operating so it can be operating on um patients particularly i like to operate on people with carotid artery disease in the next and stroke prevention but if you're on call you could get anything from the ruptured aneurysm where someone's hemorrhaging and you need to stop the bleeding or um or if someone's lost the blood supply to a leg and you've got to restore that blood supply to get to keep their leg um so it's very varied and you never know what one day to the next or what's going to come through the door you can think of you don't mention the q word in medicine okay you never mention that word the quiet word but it can all be quiet okay can't even say it and then suddenly in you know in the next second someone bursts through the door and you're up in the theater trying to stop someone bleeding have you ever had someone with a learning disability or autism come through the door what what sort of reactions and um well with the age group that we treat um it tends to be with the sort of arterial disease more with its dementia rather than learning disabilities but i have had people with learning disabilities in the clinic with other problems okay um and it's just finding you know leg ulcers that sort of thing and i suppose maybe i home in on them yeah and i see them and i and will treat them and and try and just and help them and make sure that they understand but yes we do have have patients come in and i guess i do make a bit of a beeline for them that's that's good they obviously you um show a lot of understanding with them so is there anything else that you want to share to me about your campaign that you haven't spoken about that you're busting that you know i said to you this is your opportunity now tell everybody about your campaign any idea when it's going to launch what's the plan we hope within a month's time okay so not long no not long get the communication bits and the logo sorted out from the point of view of this is to listen and and that's why we had this delay because i wanted to change things i can't say that i was going to listen to people and then not get the feedback from um the autistic community and not listen to what they said so i'm very happy to be approached be and for people to send me information tell me their experiences in hospital we want to help and if you've got ideas of how we can help what we can do or experiences you've had in hospital that you think would be helpful then just message me and i will use that within that campaign okay so what so what sort of things did the autism community come back to you with as in because obviously you put it out there you mentioned a couple of things is there anything else that people shared um it was your ideas it was it was mainly about how to help with communication and the painting is a really big issue um about understanding that but the more stories that i can get and the more examples i can use and it becomes real and that's why the simulation we're going to use some simulation um and we know that that embeds learning because of the way it's done so real life stories will help people understand that it that that it's not just one mother's opinion and that this is a real issue so i want to hear people's stories and experiences yeah the pain thing i would say as well with both my sons and even like um my eldest son patrick even when he's got a headache or you know he had problems with his ingoing toenail he had his toenail removed he would always not show when to take a painkiller or anything like that and i'm asking him well how much does it hurt he couldn't really explain it to me so i used to say to him it's okay to take if you want to two paracetamols it's fine it's not going to harm you he'll just dull the ache a little bit and where with angela he can't tell you so it's like a bit of a guessing game when you think he's got a headache or he's got a vein usually that's um under his left eye and i always know when it's slightly raised that he's not particularly well it's just because he hasn't got that um communication skill there's things that you notice as a mum you know the back of his neck might be really hot and i think oh he's probably got a fever and then when i have taken the temperature he has there's just things that you have between yeah you probably uh register with that with both i'm paranoid every time i get a gastroenteritis that it's a appendicitis and i'm gonna miss it yeah because they can't tell me okay i just want to say thank you so much um for sharing your story and i know sometimes it can be quite emotional i totally get that being a parent um jenny's going to be writing an article as well so she's going to be sharing um some information about what she's spoken about today and any links that she thinks might be useful she can put those in the article and about the campaign piece i want to wish you all the look in the world with it and i hope that you're going to be able to share it you know across all the hospitals across the united kingdom yeah so everyone look out for at campaign piece and again if you want to be one of my guests on women's radio station please contact me on anna kennedy online dot com or via any social media that i am i'm on thank you so much everyone have a great week welcome to the women's radio station supporting women's well-being women's radio station is all about diversity from opinions career ethnicity education and most importantly women's well-being we aim to celebrate the individuality of every woman everywhere providing opportunities and the platform for your voice visit our website women's radio station.com for more information i'm tamina zaman founder of empower and enrich when it comes to money do you clam up or get confused do you wish you could save more money or are you hoping you have enough for retirement you are not alone many women want to be smarter with their cash but just don't know where to start at empower and enrich.org you will find a host of options to help you take charge of your finances and learn how to put your money to work for you in an easy affordable way get in touch with me at empower and enrich.org and let's change your future together hello my name is natasha and calaha welcome to you lovely lady listeners of your very own women's radio station over the coming months i'll be doing a survey and big brand coffee shops interviewing customers asking why they like to drink coffee and if they would like to give us a health tip for our listeners the most shared and liked post will be the winner of a prize stay tuned for further details hi i'm carolyn van biers please join me for a brand new show here on women's radio station it's mother's hour if like me you're a mum juggling far too many balls and dropping most of them this is definitely the show for you we'll examine the highs and lows of motherhood and make sure you laugh out loud as we take on this challenging role together with spoonfuls of advice incredible stories it will be refreshing honest and funny look at being a mum are you struggling with money turn to us as a national charity helping people struggling to make ends meet job loss illness or bereavement can cause a real financial crisis we give practical help to get people back on track whether you're thinking of having a baby trying to get out of an unhappy relationship or just unsure what benefits you may be entitled to we can help visit turn to us.org.uk welcome to the women's radio station supporting women's well-being women's radio station can give voice to your brand with a wide range of sponsorship opportunities including individual programs we can tailor your experience for you for more information on how you can sponsor a show go to women's radio station.com women's radio station supporting women's well-being