Hello, this is Anna Kennedy, and we're at Women's Radio Station Live. We're in Covent Garden, and we're talking all things autism. My guests today are Paula McGowan, one of our Overseas Ambassador and Special Recognition winner of the Autism Hero Awards, and we also have Dan Scorer, who's Head of Policy and Public Affairs, Mencap, and also a parent of a young man who's autistic and has Down Syndrome. Before we go over to my guests, I just want to contact you a little bit about the Autism Expo that we had last week, which was amazing. We had so many people that came to the event, lots of stands. We had speakers, and one in particular that I wanted to talk about was Act for Autism. So that was Tessa Morton and Jane Gurnett run Act for Autism, a non-for-profit company that delivers training, giving talks and sets up creative projects for young autistics. They actually showcased a winning film called Autism Voices. It was very, very good, and they're taking it into schools. So if you Google Act for Autism and Autism Voices, you'll be able to watch the film, and what they're saying is that you can download it for free and take it into schools. It's very, very good. So welcome, Paula. Welcome, Dan. Hello. So, Paula, we've met quite a few times now. We're good friends, and as I say, you won our Special Recognition Award. Wasn't that just like a real tearjerker night that night? It really was, actually. I was so humbled, but also privileged to have been put forward for the award, never alone, you know, win it. I'm truly grateful. Thank you very much. So we're here to talk about Oliver. So the people who are listening that don't know your story, would you mind just telling us a little bit about who Oliver was? So Oliver was my teenage son. Oliver was a fantastic person, full of life, full of fun, very able, was trained to be a Paralympian, playing football for England F.A., completed his GCSEs. But Oliver also had other additional needs, such as, well, he had autism, he had cerebral palsy. He also had focal seizures. And sadly, Oliver's seizures were very misunderstood. So when he was anxious and agitated, his autistic behaviours would present themselves. They became more obvious. And sadly, because our medics that were treating Oliver at the time didn't understand autism and what was being presented to them, they used a medical cosh. So they used antipsychotics to make Oliver quiet. And Oliver had adverse reactions to those medications. And a long story short, it resulted in Oliver becoming so badly brain damaged that Oliver died. So you're obviously campaigning now. I am for mandatory training. So we're going to talk about that a little bit further on in the programme. So you've talked a little bit about what's happened to Oliver. So you started a petition. So the last time, how long was it when you spoke at the radio station with me? It was quite a few months ago, wasn't it? Probably about five, six months ago. Yeah. So you started a petition. So what happened? So I sat down one day and we know that the drug caused Oliver's brain to swell. But I sat down one day and I thought, well, why did the doctors do what they did? Why did they reach for a chemical cosh? And to me and to my mind, it was clear. They didn't understand how to make reasonable adjustments. So they didn't understand autism and autistic behaviours and how they present. And those, of course, are people who have an intellectual disability. They didn't know how to make reasonable adjustments. And I thought, you know, that's not right. First, it's cost Oliver his life. But actually, why would we expect our doctors and nurses to just know how to do these things without adequate training? It's not acceptable, I don't think. So I started a petition asking for this training for all of our doctors and nurses to receive mandatory training in autism and learning disability awareness. Mandatory for the pure reason, because we have the nice guidelines and we have so many guidelines and they are guidelines. And in all of, you know, from our, you know, from our experience, they're not always a dear term. If the training is mandatory, that means that they have to have that training. So how many signatures did you get? Oh, I think it was getting on to about sixty thousand in the end. And it was what happened. So normally with the petition, you are normally expected to get a hundred thousand signatures, which is really hard on it. It's really hard to get them signatures. But in actual fact, I think we at the point of debate, we got around about fifty two thousand and then suddenly it was called to debate. And how did that feel? Well, it's sort of it's a very different experience to me because I've never well, I hadn't even been inside the House of Parliament at that point. So it was incredibly interesting, but actually it was very humbling. It was very emotional to hear Oliver's story told over and over. It was inspirational to see that Oliver's story was debated across Parliament. So we had everybody within that room all agreeing and championing Oliver's course, really. So it was inspirational, unexpected. It was brilliant. So, Dan, you have been supporting our lovely Paula here. And so you're head of policy and public affairs. So can you tell us a little bit about what you've been doing with Paula and how you've been supporting her? Sure. So we've been supporting Paula with the meetings that she's been having, you know, meeting with key ministers in the Department of Health, talking to them about the consultation that's been developed that we'll talk about later on mandatory training for all health and care professionals. And we've been supporting her with the petition and making sure that MPs in Parliament are briefed about all of the issues that the petition is raising, so that they're informed and they can contribute to the debates in a knowledgeable way and think about what they should be doing to make sure that, you know, no one else like Oliver dies avoidably. So how has it been working with Paula? She is forced to be reckoned with, you reckon? She's amazing. She is a relentless campaigner. She's a wonderful person to work with. She's a brilliant communicator and, you know, incredibly positive and constructive. I think, you know, when you're a bereaved parent, it's incredibly tough to be working with all these kind of national organisations, you know, with the NHS, all these systems which can feel very kind of impersonal. But Paula never makes it personal. It's all about the change. It's all about the big picture. It's all about making sure that no one else with autism or with a learning disability, you know, dies avoidably in future and, you know, getting the changes made that could have saved Oliver and will in future save others. Have you come across any other story similar to Oliver's situation, would you say? Well, I mean, if we look at the picture nationally, we know that over a thousand people with a learning disability die avoidably every year. And the situation for people with autism is very serious as well. You know, there's research that Autistica and others have done around that, that's showing that, you know, people with autism are also dying prematurely. So, you know, that is extremely worrying picture nationally. So, Oliver's case is not isolated. Obviously, there are unique circumstances around the drugs that he was given, but the issues that Paula's raising about medical staff not having the training to understand autism, not having the training to understand learning disability, not understanding, you know, the kind of changes to their practice they could have made that would have actually meant the outcome for Oliver and for, you know, hundreds of others every year could have been completely different. That's the key thing, you know, that we're working on with Paula, making sure that in future, the training that doctors and nurses get around autism and learning disability is much better, much more consistent, so that we get those changes to practice on every ward up and down the country. Thank you. So, Paula, you met with Helen and all the learning disability nurses who I have met quite a while ago, and you gave a talk to the nurses, the learning disability nurses. How was that for you? You know, it's wonderful to work with people that really make a difference, that are in the job because they want to be in the job. They really care about people who have learning disabilities and those that have autism. They're truly inspirational, and they are trying so hard to get things right. But they also, in turn, are all embracing this training. They themselves are telling me that they've been fighting for this for years and years and years. And, you know, Oliver's come along and his story is embracing everybody, and he's bringing about change. But the nurses themselves, I mean, they do such a wonderful job. They really, really do. Yeah, I went to, I think it was Leeds a couple of years ago I met them, and they were having a competition, a dance competition as well, where they'd been training, where they had students with learning disabilities that had been training with professional dancers. And I was one of the judges, and it was such a lovely event. I was chatting to some of the nurses, and what they were saying was that when they actually speak to some people, and they're saying, oh, you're a learning disability nurse, so you're not a real nurse then. And it's like, what? And it's just like, I think they are a real nurse, and they've probably had extra training. So that is what the stigma that they are coming across, which I just couldn't even get my head around it. You know, they've faced this for an awful long time, and I hear this over and over again. Actually, learning disability nurses are very specialised. You know, there isn't enough of them. We need more of them. We need far more funding to have more of them. I would put them at the top of the table, not at the bottom. They need far more respect. And that has to be led from NHS England, to be honest. Most definitely. So if people wanted to follow your story, Paula, where would they find you? So they will find me on Twitter under the name of PaulaMC007. I see James Bond. Well, you know. Also, Oliver has his own web page where we publicise Oliver's story, and that is OliverMcGowan.org. OK, and how about Mencap? Is there anything that you would like to share that people might like to follow? Yeah, so our campaign, Treat Me Well, is our campaign to improve health training, and there's more information about that on our website, mencap.org.uk. OK, so if you're interested, please follow Paula. She's got lots to say, as you can see when you follow her on Twitter. And she's a very busy lady, but a very passionate lady, and really driving for change. If you'd like to know what we're doing at Anna Kennedy Online, it's www.anakinadionline.com. Or you can follow me on Twitter, at AnnaKennedy1, AnnaKennedy Online on Facebook, and on Instagram, it's at AnnaKennedyOBE. We're a very busy charity, and we're made up of volunteers. We've got lots of events coming up across the year. And again, we've got the Hero Awards, where Paula came along. So if you're interested in nominating someone, please check out the website. We have 12 different categories, and we narrow it down, which is very difficult to 36 finalists. So we're at Women's Radio Station, and we're live. We're at Covent Garden, and I'm here with my two guests, Paula and Dan. Welcome to Women's Radio Station, the voice of women worldwide. 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, Stephanie Passamante, on Women's Radio Station. Hello, and welcome to Julie May is Listening. Hello, this is Anna Kennedy at Women's Radio Station, live voice of women worldwide, talking about all things autism. Women, the possibilities are endless. That's what makes us different. I'm Saskia at Sable Forex, and we specialize in saving individuals and companies money on their international money transfers or foreign exchange. So in monies crossing currencies, whether it's euros to yen or rands to pounds, that's where we can add value. So for all your foreign exchange needs, I'm Saskia at Sable. You can contact me on saskia.johnston at sableinternational.com, or my number is 0207 759 7541. Hi, I'm Helen Prosper. I'm a health coach, and I support people to take back control of their health so that they feel radiantly well and vibrantly alive, because it's from that place of health that we really can do more, be more, give more, play more, and co-create a better world. 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Whether it be a product or brand service you want to promote, if you are interested in sponsoring or advertising, please contact me on 07 956 371 483 or alternatively ZM at womensradiostation.com. Hello, this is Anna Kennedy. We're at women's radio station live at Covent Garden, and we're talking all things autism. My guests today are Paula and Dan, and before I go over to Paula and Dan to talk more about the campaigning, I just wanted to let you know, because obviously a lot of you have been following about our homeless gentleman in Cornwall, Dominic, and he's moving in as we speak to a property. I'm so pleased for him. I know he's anxious about it, but we're so happy that he's finally got somewhere. It's taken a little bit of time. I've been working with Autism Anglia and Annie Sands. Hello, Annie. You've done a fantastic job, and he's moving in today, so we'll give you an update hopefully next week. So Paula, can you tell me a little bit more about what has happened since the debate? Paula, how was that for you? It's been a rollercoaster, Anna. I can tell you. So we've had consultations to look at what that training might look like, and it's been quite inclusive of people with intellectual disability being involved and those with autism. So it's been looking at the structure, and that has resulted now in it being presented to the government has launched an open consultation for everybody to be involved, to have their voice heard. This training is being taken seriously, in my opinion, and it's an opportunity not just for our autistic community to have their voices heard and those with learning disability, but it's also for our professionals. You know, this training is also for our doctors and nurses, porters, receptionists. They need to have their voices heard. They must get themselves involved in forming effective training because, you know, Anna, we definitely don't want e-learning, do we? No, definitely not. I've seen a lot of these courses as well on, like, voucher. You can learn about autism on voucher with something like £25, and I just thought, is that for real? You know, at the end of the day, Anna, this training is about saving lives at the minimum, making a medical experience better for our most vulnerable. And, you know, ultimately, it could have saved all of us life. So actually, is the training worthwhile? Of course it is. It's got to be effective. So if people want to be part of the consultation, do you know how many people have contributed so far? So I was told yesterday we've had 1,400. Oh, we need a lot more, don't we? Absolutely. You know, it's too late. Once the training is in place, it's too late to say, oh, I don't like that. If you've not had your say, this is your opportunity, and I will say it bluntly, don't whinge about it when it's in place. Yeah. So when's the closing date? I think it's around about the 12th of April. Is that right, Dan? Yeah, 12th of April. So what form of training would you like to say? So what is it that when you've been speaking to ministers, because I know you've been speaking to me, you've been a busy bee last couple of days. What form would you like it to take? So the proposal is that it will be on three tiers. First tier is for professionals who don't come into contact much with our most vulnerable. So they will get e-learning. We won't talk about that. And then tier two, my understanding is, and I stand to be corrected, is the middle people, so GPs, doctors, nurses, will receive tier two training, and then the specialist will receive tier three. But my opinion is that actually it's the doctors and GPs, nurses, decision makers who should receive tier two training, because obviously, you know, they are making decisions. They are not necessarily specialists in the field of autism and learning disability. The specialist who received tier three, they should know this stuff, shouldn't they, surely? But Anna, my opinion is that actually it's got to be fit for purpose. It must be face to face. It must hit our undergraduates. So we've got to get hit at the doctors in training, at the nurses in training, and it must be led from the top down, because we need to get rid of the hidden bias. We need to change culture. And that's where that's where it has to start and begin. Yeah, I was speaking to Colette's mom and dad on the Victoria Derbyshire show. Sadly, they lost their daughter to anorexia, and she had a diagnosis of autism and diagnosed quite late. Very articulate, clever young woman. But that's what we were talking about. The more articulate that our children and adults are, the less support they seem to get. One of our patrons who was going through the mental health system, very clever young woman, who's going to be coming and speaking on the radio show in a few weeks time, she said she could hear the doctors and nurses arguing, saying she's too clever. She's too articulate. We don't know what to do with her. We don't know how to deal with her. And in the end, she actually started writing plans for them for what they needed to do. So she's going to be sharing that story. And I said to her, when you're in the right place, which she is now, she's going to be sharing what she went through as she went through the whole thing. I know that plays into it, doesn't it? You know, the government are actually embracing having the autistic community, having their voices heard and obviously those with intellectual disability. And she she has a lot of valuable lessons for our medics to learn because, you know, who are the experts at the end of the day? The experts are those very people who have, you know, who do have autism and intellectual disability. They are the ones that can lead the way with this training. She's actually writing some training for the local authority for the NHS where she live. She's living at the moment. She's going to be talking more about that. So, Dan, tell me a little bit more about the Treat Me Well campaign. But before you do that, I spoke briefly about Dominic and being homeless. Are you noticing a difference in people coming to you with a learning disability that may be homeless? We are. Yeah, we're getting more calls coming into our information and advice service. People with a learning disability who, you know, who are homeless or who are not getting the support they should from their local authority and are vulnerable to becoming homeless. So more and more we're having to take, you know, a very strong role in advocating with people that local authorities meet their duties to give them emergency housing. OK, so if somebody is listening in that might be on the verge of being homeless or are homeless and have got a learning disability, they can contact Mencap and speak to somebody. So again, what's the website? So it's mencap.org.uk. OK, thank you very much. So tell me about the Treat Me Well campaign. What's this all about? So the Treat Me Well campaign is all about changing the way that people with a learning disability are supported when they go into hospital. So it's about the training. It's about making sure that doctors and nurses don't set foot on a ward without getting the right training to support people. So the campaign is being led by about 30 groups of people with a learning disability and their families up and down the country who are working with their local NHS trusts on the key issues that matters to them. That could be training. It could be signage. It could be all those kind of those issues around how people are able to use hospital services and the concerns that they've got locally. And then nationally, we're looking at the consultation that Paul has talked about. That's a really important consultation. It's covering the training that will be given potentially in future for people working in the NHS now, but it's also covering what future doctors and nurses will be taught when they're going through medical and nursing school. So it's a huge opportunity to actually get issues around regional adjustments, the Mental Capacity Act, all of these key things that can be absolutely instrumental in failures in care addressed in training in the future. Where is the funding going to come from? Because I was just thinking now, this is obviously a big ask. I'm just thinking, where's the money going to come from? Where do you think? Well, the NHS has just got a £20 billion funding settlement over the next five years. So is it coming our way, though? Well, I think there's lots of questions about that. But I think certainly when you talk to ministers, their expectation is that the money is going into the system to make this happen. So the consultations lie at the moment, and we're expecting the government to respond to it by the summer, saying what's actually going to happen. And then we're expecting changes in the law to actually take place at the end of this year, and then things to start moving next year. So if you don't mind, as a parent of a young man who's autistic and Down Syndrome, do you think this is what's driving you with what you're doing because you're thinking about him and his future? Yeah, definitely. And also working with campaigners like Paula, who are inspirational, who suffered horrendous loss, but are dedicating themselves to trying to improve the system so that no other families will go through what they have. That's inspiring as well. And so both as a professional and as a family member, of course, you know, want to be part of that. Thank you. Paula, so you've been meeting with some interesting people the last couple of days. So can you share any information? Oh, goodness me. I am incredibly lucky to have had a meeting of several meetings yesterday. So I met my day started off with meeting Chris Gidmore. OK. Followed on by the wonderful Caroline Dynage, who is incredibly all of them are passionate anyway, but Caroline is a huge advocate for our autistic and then disabled communities, making sure that they get the right health care needs. Then I met again the wonderful Barbara Keeley. Fantastic Baroness Sheila Hollins. Again, a huge campaigner for those most vulnerable. That followed on by a meeting with Norman Lamb. And Norman's great. I've met him. You know, all of them are great. These this group of people that they are striving on this work and so hard for, for, for, you know, our communities to have better health care outcomes, whether it's transforming care, whether it's Barbara herself is passionate about autistic and disabled communities locked up in ATUs. That's a big topic at the minute. It's heartbreaking. And, you know, the public does need to know more about what is going on behind the scenes of our most vulnerable locked up for no other reason than having a label attached to their name. They're not just locked up. They're fed through holes indoors. It's just like it just makes you it's scary because you just think I've got two sons who are autistic. If they went through a crisis, I'm just thinking. And that's why I asked my husband many moons ago because I was reading horror stories about he needs to become a barrister. He needs to become a solicitor because we need to try and plug every hole that we possibly can to support our children and to support our adults as they grow up within this complicated system. You know, what I'm finding is I'm a member of a lot of closed Facebook groups for families who have autistic children and we need their support. They don't realize that this can happen to them. I'm doing this to prevent what happened to all of our happening to their children. They mustn't ever think it won't happen to them because it can. OK, thank you. So, Paula, we're going to carry on. So if you've got any questions you might like to ask Paula, you can ask me through the charity website and I'll pass them on. It's www.annakennedyonline.com. If you want to contact their office, it's 018 95 5 4 0 1 8 7. And we're at women's radio station. Women's radio station is a fresh new broadcasting platform driven by love and passion. 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What are you all doing to raise awareness and acceptance? So what I am doing and our charity of volunteers, I'm going to Heathrow Airport on Monday where I'm going to be looking at the new sensory room and it's been been planned for quite some time, not quite finished yet, but I'm just going to see where they're at. I've also got Dr Chris Papadopoulos who's coming on Women's Radio Station next week and he's the public health academic in autism and also a parent himself of Children on the Spectrum. I'm also going to Gateway Radio and Aston Avery who was one of my ambassadors, who's an amazing chap and he is one of the presenters there at Gateway Radio. So we're going to be talking about all the activities that we're doing in the charity and the one I'm very excited about is we're going to the Apple Store in Covent Garden and six of our performers from Autism's Got Talent are going to perform. They are buzzing. So we are going to be performing there. So we're really, really excited. And also what I can share is next year we've been invited to Disneyland Paris where Autism's Got Talent is going to be performing there. So that's something else we're buzzing about. So Autism's Got Talent, the main show is on May the 4th and if you'd like to come along, it's at the Mermaid Theatre Blackfriars. We have 20 performers from all over the country and overseas. Our first performer from India and then we have a performer from Ireland. We've had in the past performers from Croatia, from Sweden, from America, from Canada. It's such an amazing show and it's the highlight of my year. So back over now to my guests and Paula. All of it is part of the leader investigation. So that's the Learning Disabilities Mortality Review. Tell me a little bit about that. So leader came about on the back of campaigns and issues raised by Mencap and lots of other families. But basically what's happening is we have 1,200 potentially preventable, avoidable premature deaths a year. Twenty. Sorry, 1,200. 1,200. 1,200, sorry. It's OK. You're very tired. I am indeed. 1,200. And for no other reason than having a label of learning disability attached to them. That's just like horrendous. So Oliver's death is being reviewed by the leader programme. However, his has thrown up a lot of problems and a lot of flaws with the investigation. And sadly, I have to say at the moment, it's not fit for purpose. At the moment, we've currently got local CCGs marking their own homework, shall we say. So they are the very people that have found themselves not to be at fault in the first place. So they are then asked to review and mark what's in front of them. Well, are they really going to be independent, impartial, unbiased and say, oh, yes, we disagree with our first findings and we've got it wrong. Sadly, in Oliver's case, we found that they found themselves not to be at fault. Under a freedom of information, we found lots of failings going on, lots of arguments. So, for instance, there was a box ticked to say that Oliver's death was potentially avoidable. How does that make you feel when you saw that? Well, we knew. We knew Oliver's death was avoidable. We were there. You know, without a doubt, if he had not been given the medication and his temperature had been treated, Oliver would be alive today. So we knew the answer anyway. But to have it revealed that that box was then unticked with people within the CCG, Bristol CCG, saying we cannot be seen to be disagreeing with the coroner. That box must be unticked. So how do you get around that then? So what can you do about that? So what we've been very fortunate NHS England have taken Oliver's case back. They are looking at the failings within within the leader process and they are working very, very hard to put things right. Now, I was fortunate to meet with many ministers yesterday, including Caroline Dainage, who is, you know, she is she's behind leader anyway. So what's her title for people who don't know? So she is the health and social care minister. So do you think she's passionate and as obviously as she can't be as passionate as you are. But do you think what she's saying to you is it because I just want quite a few people and it's lip service and then nothing ever happens after it. Do you think speaking to these people, you can see results? Absolutely. Okay. Caroline is a huge advocate of leader anyway. She wants this to work. She herself, I will use the word she's as upset. She's very upset to see the failings that have occurred with Oliver's case. And, you know, she has herself will be looking into her. I believe that those within NHS England are equally upset by what has happened. And I hope that we can all work together to endeavor to put this right. But to ensure that leader is fit for purpose. After all, we cannot have twelve hundred preventable deaths a year for no other reason than having a label attached to their name. But it is about, you know, leader is the only thing that we have available to look into these deaths and to to have lessons learned from them so that we can prevent these future deaths. What's your opinion, Dan? What do you think? Well, leaders been going for a couple of years now. It's only kind of late last year. It actually covered the whole country. In Paula's case, clearly there have been major problems with the investigation and now NHS England have got to resolve that. But the process is really important. You know, there are thousands of reviews that will be taking place of deaths through the program and issues that are flagged up through it. So, you know, failings that have taken place that need to be changed. Things that need to be addressed by the system as a whole. So things like dysphagia, things like sepsis. There are areas of practice which are being identified by the program that the NHS as a whole needs to get better at in supporting people with learning disability and people with autism. So the program is flagging up these really important issues that needs to be improved on. So it's about learning nationally and making sure that the NHS changes so that it's able to give much better support for people with learning disability and people with autism. Well, could you tell me a little bit about the NHS long-term plan for autism and learning disability? So that was published back in January. So the NHS has got its extra £20 billion and that plan sets out how they're going to spend it over the next five years. Do we know what percentage is going to be for our children and adults? No, we don't, not yet. I think the really important thing in that is that learning disability and autism are one of the clinical priorities set out within the plan. So there is a section in that plan all about what's going to happen to change things for people with learning disability and people with autism. So have you seen the section and what it actually entails? Yes, so people can go onto the NHS England website and they can find the plan and have a look at it themselves. So what jumps off the page for you? Well, so the really important thing is all the work we've been talking about stopping avoidable deaths and the mortality review program. We didn't know if that was going to carry on. The plan says it will. So that's really important. The money will be made available for that. Transforming care, which we just touched on earlier. You know, we didn't know what was going to happen with the transforming care program after this month when the current program finishes. The long-term plan told us so it announced what's going to happen for the next five years. So, you know, really important announcements in there about the key things the NHS is going to be doing to address, you know, the massive health and care inequalities faced by people with learning disability and people with autism. What's your opinion, Paula, on the long-term plan? Have you read it? Is there things that jump off the page for you that think, yes. Well, what I'm embracing is that autism is mentioned on there and I know that came on the back of my petition and my campaigning. So autism originally wasn't on there. It was just learning disability. So, hallelujah, I embraced that. What I'd like to say is a lot of people assume that people die early, prematurely, just because they've got learning disability or autism. An actual fact, they've got full life expectancy. I've had quite a few parents where their children have been diagnosed and they'll say, how long have they got to live? Yes. Just because of what they're reading on Google or whatever it is that they're researching, but they can have a full and healthy life. Yes. And if they have equal health care, I'm sure Dan will tell you, I think, what is it, Dan? Well, ladies and gentlemen, how sooner are they dying than the rest of the general public? So the mortality review, the last annual report said that women with a learning disability were dying 29 years earlier than the general population, which is utterly shocking, and men 22 years earlier. Okay. So, Paul, if you had to reflect back on everything that you've been doing, because obviously things happen within our life that we change our path, would you have thought, looking back at yourself, say when you were 20, would you have thought you'd been doing what you're doing now? And obviously it's tragic about what's happened to your son, but it's almost like people say to me, and I've seen myself, that I've changed because I used to be very quiet, didn't really say very much, but because of what's happened to my boys and I've had to fight the system and everything else that's gone along with it, would you have thought you'd have been able to do what you're doing now? Not at all now. I'm on a very, very different path to the path I envisioned for myself as a younger person. What did you used to do? I'm a nursery teacher. Okay. Early years. However, I've got to say that I was bullied myself at school, so as I've got older and stronger, more confident, I'm more about making sure that everybody, their voices are heard. I've always supported the underdog, so never quite a campaigner, but I would always make sure that nobody was picked on. I've always been about that, really, to be honest. In actual fact, is there any surprise that I'm doing what I'm doing now? Probably not, but I didn't see myself doing it. Okay, so you don't live in this country now. You live in Australia. So I live in Australia at the moment, but I live between the two countries, to be honest. Yeah, you're travelling backwards and forwards. Yes, I do. Yes, so my husband is in the military and is posted overseas at the moment, but I do live between the two countries. Okay, so just to remind everyone, if they would like to contact you via social media, where can they find you? So they can find me on Twitter under the handle of PaulaMC007. Yeah, I like that. Oliver's web page is olivermcgowan.org. Okay, and what about Instagram, your Instagram? I'm not very good at Instagram, I've got to say. Oliver does have his own Facebook page as well, which is just us for Oliver. Okay, and Mencap, just to remind everyone. It's mencap.org.uk. Thank you very much, and Anna Kennedy Online again. It's www.anakinedyonline.com. If you'd like to ring the office, I've had so many calls actually this week. So it's 01895-540-187, and that's after the appearance on the Victoria Derbyshire show talking about autism and anorexia. So if you'd like to contact us again, it's www.anakinedyonline.com. Welcome to Women's Radio Station, the voice of women worldwide. 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 Basamonti, on Women's Radio Station. Hello, and welcome to Julie Mae Is Listening. Hello, this is Anna Kennedy at Women's Radio Station, live voice of women worldwide, talking about all things autism, women, the possibilities are endless. That's what makes us different. I'm Saskia at Sable Forex, and we specialize in saving individuals and companies money on their international money transfers or foreign exchange. 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If you are interested in sponsoring or advertising, please contact me on 07 956 371 483 or alternatively zm at womensradiostation.com. Hello, this is Anna Kennedy and we're at Women's Radio Station talking all things autism and we're live at Covent Garden. This week it's Epilepsy Awareness and I just wanted to share just in case if you saw somebody having a seizure, what do you think you should do? So stay with the person. Time the seizure. Protect from injury. Loosen anything tight around the neck. Do not restrain the person. Do not put anything in their mouth. Roll the person on his or her side as the seizure subsides. After the seizure, talk to the person reassuringly. So Paula and Dan, thank you again for coming. I'm so appreciative of you coming to the radio station. Dan, please can you talk a little bit more about transforming care if you don't mind? Sure. So back in 2011, the BBC Panorama programme uncovered the horrific abuse at Winterborne View in South Gloucestershire. After that, the government pledged that they were going to shut down assessment and treatment unit beds and support people in the community. That was promised by 2014. Didn't happen. Then in 2015, NHS England published a new strategy called Building the Right Support and that committed to closing 35 to 50% of inpatient beds by now, by March. That hasn't happened. We're at about 19, 20% now. And we talked about the NHS long-term plan earlier. That set out a new target which is to close half of the beds by March 2024. So that's a long way away. So there have been lots of high profile cases. Paula mentioned earlier, people enduring horrific treatments in units. So being given anti-psychotic medication, being kept in seclusion and also facing physical restraint as well. So the programme can't deliver the change too quickly. We've been campaigning on this ever since Winterborne View happened. It's obviously a huge disappointment that we haven't got anywhere near where we should be now. Who are they answerable to? So if they say, right, we're going to close so many beds and it doesn't happen, are they answerable to anyone? Well, what they did in 2015, they set up 48 Transforming Care Partnerships. So these are up and down the country. So they're made up of the local NHS, the national NHS and local councils. And they should all be working together to work out what support they need to have in the community for people with a learning disability and people with autism, and to make sure that they've got the housing, they've got the specialist support staff so that they can both bring people back from out of area units back into the community and also make sure that people in their families get the right support now so they never have to go to units in the future. Now, the progress on that has been really patchy. There are some areas that are doing well, there are others that clearly aren't. So is it pause court lottery? Exactly that. Okay. So in terms of how are they accountable, well, they're accountable to NHS England and to government ministers who've got responsibility for this. I think one of the problems is that the NHS alone can't deliver this change. So we need the Department for Education to be involved. We need to make sure that people are getting the right support throughout childhood. We need the Department for Housing and Communities to be involved to make sure that we've got the right housing in the community for people throughout their lives. So, you know, the ministers need to work together, they need to lead this together so that it's covering, you know, health, it's covering social care, it's covering education. At the moment, we're not seeing that join up. We're not seeing them work together. But they're always talking about working together, but you never really see it happen. It's even with like the educational healthcare plan, you've got, you know, yes, they're going to be working together, but you don't actually see it happen and it's like they're always trying to pass the book or it's just very frustrating. Speaking to parents as well, they feel that their children are very much low in the priority. It's just like, it's very frustrating. I just think the whole process from once your child is diagnosed on the spectrum or whatever disability it may be, it's very complicated. It's like you have to navigate your way through and you're talking about parents who are tired, you know, they're married, they've got other children, they're not sleeping like myself, you know, like two to three hours a night. They're trying to hold down a job or their marriage breaks up because of the stress. It's just like, it's like they make their lives more complicated. That's the way I see it. And I, you know, I was recently in Hull and I was speaking to 30 mums there and they were talking to me about how still people say things like, oh, your child doesn't look autistic or no, no, she can't possibly be diagnosed with autism. She's a girl or even one of them was like, oh, she's blonde. It's like, what? So we've still got a long way to go. And as I say, the more articulate, the less support that they get. And you've got schools are just reading recently about teaching assistants. They're talking about possibly getting rid of teaching assistants. It's just like they're the backbone of the school and it's just like, I just feel very frustrated for the parents that I'm talking to. And they're saying, Anna, please get the word out there. And obviously we try our best, but it's very frustrating. And you get a lot of people that you do speak to, for me, is lip service. Like you speak to them and say, yes, yes, yes, yes, yes, yes. And then nothing happens. And it's just like, why have I just wasted my time, my energy talking to you when you're not going to actually do anything? You're just thinking, oh, well, we'll just pacify her type of thing and then she can shut the door on the way out. Am I being wrong or am I saying things wrong? No, I think you're absolutely spot on. I think the book has passed from pillar to post. Sadly, there's not enough money, not enough time, not enough resources put into systems. So we've got social care, which I believe personally is quite broken. Health, there's not enough money in there. There's not enough staff. There's not enough resources. Education, where do we begin with education? But it comes to a point where these children, these young adults, they become numbers. So we forget that actually these are actually people with a right to an education, a right to healthcare, the same as everybody else, the right to live as part of our society. And yet they've become a number as if nobody cares. People think if they can't see it, it doesn't affect them, but it's not okay. And one, we have to change the perception and understanding of what autism and learning disability is. We've talked about that. But also we need to apply pressure onto the government to actually make the right changes. And you've mentioned earlier on about the systems, the organisations not being joined up. Well, actually that is, that's not okay. And it's a failing, it's a huge failing. And I'm sick and tired of them whinging about it. Well, actually do something about it, because at the bottom of this pile is a lot of people, a lot of children, adults who are being failed by the system. And that is not okay. And everything you read about is early intervention. And it's true because I've seen children that have come to our school when we worked with them really early on. And they can really progress. Some of them are going to college, some might go on to university. But it's just like the key is, is to work as early as possible with the children. And listen to the families as well, because we're obviously living it 24-7. Like as I say, my son Angelo, he's got minimal verbal skills, but I know when he's not well. Like this morning I could see he wasn't well. You just know, and it's just like, let's talk together, let's work together. And it just seems like, I just thought this is the thing that I get frustrated about, where it's like a bit of a demonos. Well, Anna, you've just said about listening to parents. And, Dan, I know you're a parent as well. But, you know, it comes down to the fact that if we, as Oliver's parents, had have been listened to, you know, we made it very clear to all medical staff, doctors, not to give him antipsychotic medication because he was sensitive or we were told allergic to her. And we were ignored. Oliver himself was ignored. Oh, that's because he had a label attached to him. But, you know, parents do need to be listened to. We do know our children best and we know what's best for them. And I know, Dan, you've got, your son's also got additional needs as well. And, you know, we're all in the same boat together. And we're all trying to wade through this system that needs more money, more time, more resources and more skilled stuff. So it's a complicated, it's a stressful system for parents. So let's talk about what do we do to relax? Because obviously we've got to keep going. And as parents, we're the linchpin to the family. And if we go down, everyone else will go down with us. So what do you do, Paula, to relax? I find to keep going. Walking helps me because obviously I have lost the most wonderful person in my life. But I find, you know, and I am navigating through a very difficult system, a system that wants to protect itself, I have to say. So I find lots of walking really, really does help. And I have to say, on a Saturday night, a nice glass of Prosecco, a bar of dairy milk, and watching the voice is usually helpful. How about you, Dan? What do you do to relax? I get out into the garden. Oh, do you? Yep. I find, you know, there's nothing like some time out there, just kind of nurturing things, just to clear your mind, think things through, you know, go through all the challenges that you're facing and just try and get things in perspective. I must admit, I'm not a gardening person. I hate weeds. They just seem to overgrow the garden. So, yeah, as people know for me, it's walking with Angelo at the weekend. We sort of do five to ten miles. And then obviously I like my dancing. I like my tap dancing on my Zumba. But I must admit, I haven't been for four weeks because I've been so busy. But I'm going to make the effort this Thursday to do it because I can feel like I'm missing it because I need to get rid of stress. And it's just like work, work, work, work, work all the time. And then up in the middle of the night and all that goes with it. So I just want to say thank you very much for sharing. Obviously, Polly, you're amazing. We've become good friends. Thank you for being one of my ambassadors for the charity. And we're just going to keep pushing, aren't we? We are indeed. And I'm not fantastic. I'm just a mum, the same as lots of other mums, all fighting for the same thing. And I've got to say, thank you for choosing me to be your overseas ambassador. Thank you. And Dan, thank you very much again for coming to share information about Mencap. So if people are interested, I think I'll probably bring you back again to chat about. We're just chatting offline about lots of other topics we can talk about. So there's always something to talk about within the disability world. So last parting comment. Can I just say I'd like to take this opportunity to thank Mencap for the support that they have given me and my family. I couldn't do this campaigning without the support that they've given to me. They have been at the end of the phone day and night, and I mean nighttime as well, because we are going through an awful time and they are consistently there to support us. So I'd like to take this opportunity to say thank you to Dan first and foremost and obviously the wonderful Bella Travis, who isn't with us today. So thank you, Mencap. And I also would like to say thank you to Women's Radio Station for giving me the opportunity to share what's going on within the autism world and the disability world. Without this opportunity, a lot of people would not be listening to this. They'd feel alone so they know that they're sharing the information with them so they're not feeling alone. So again, we're at Women's Radio Station. We're live and we're in Covent Garden. And my guest next week is Dr. Chris Papadopoulos, a fantastic gentleman, and we are going to be talking all things autism. Women's Radio Station is a fresh new broadcasting platform driven by love and passion. Connecting women around the world in a global network is all about diversity. From the opinions, career, ethnicity, education, we aim to show the individuality of every woman everywhere, providing opportunities and a platform for your voice. Women, the possibilities are endless. That's what makes us different. Hi, I'm Liz Van Linden, the UK travel consultant for Hazelmere Travel. People come to me as they want unique experiences and a personalized service. This happens from the moment that they inquire until they come back home. I work with luxury tour operators. You can contact me on 07825 441212 and Liz spelled L-I-S at hazelmeretravel.co.uk I'm Tamina Zaman, founder of Empower & Enrich. When it comes to money, do you clam up or get confused? 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