Hello, this is Anna Kennedy. We're talking all things autism and I have a lovely guest today called Julia Hopper. But before I go over to Julia, I'll just give you a few details that people have been asking me about. So people have been asking me about Deputieship and Decision Making. So if a person lacks the mental capacity to make their own decisions, then an application can be made to the Court of Protection for the appointment of a deputy. A deputy is different to an attorney, so you need to make sure that you're applying for the right area. So what is a deputy? It's a brief overview that there are two types of deputies. So it's property and financial affairs and personal welfare deputy. A personal welfare deputy would make decisions about medical treatment and how someone is looked after, whereas a property and financial deputy would do things like paying the person's bills and managing their investments. You can apply to be one type of deputy or both. So property and financial affairs and deputy ships are more common. So if you're interested, lots of information on the Snapcare website. So that's www.snapcare.co.uk. And if you type in Deputieship and Decision Making, you'll find out further information. Also something that my son Angela went through was an annual health check. Now, I didn't realise that doctors actually did these health checks for adults like Angela, and apparently I've been reading in a magazine that three-quarters of people with a learning disability aged 14 and over have received an annual health check two years ahead of an NHS long-term plan target. People with a learning disability who often find it difficult to spot or communicate symptoms can get a full health MOT from their GP who can quickly diagnose and treat any health problems such as cancer, constipation or cardiac disease before they escalate. The NHS long-term plan set an ambition that by 2023 to 2024, at least 75% of people aged 14 and over on the learning disability register receive an annual health check in a drive to tackle health inequalities for people with a learning disability. Now, Angela had one and something came up and now he's had to have three scans. So keep my fingers crossed that everything's okay. He did really, really well at the hospital. He had an ultrasound and the chap that was working with Angela was really, really patient. He was quite nervous because obviously Angela's got minimal verbal skills and as soon as he steps into the hospital, he finds it quite stressful, but he did really, really well. I was very proud of him. Also on the charity website, one of my charity champions, Beverly, she is now doing a book review every month. So one of the books she's just been recently reading, and it's not about autism, but it's with Dr. Amir Khan, who is quite popular amongst a lot of families in the community. And the book is called The Doctor Will See You Now by Dr. Amir Khan, a book review by our very own charity champion, Beverly. So what she's saying is that indeed Dr. Khan's book is one of true admiration for his profession and colleagues and he really does enlighten you to understand the better role of a GP. It was also so heartwarming to hear him talk about his patience in such a lovely, warm manner. And having watched him on TV, I found myself reading the book in his voice. That makes sense. Making it evenish. Is that me? Hi there, Melanie. This is Melanie who's trying to get in to join us with Julia. So yes, you're in Melanie and we're ready to chat very soon. Oh, hi. Should we do that? OK, so it's vocal only, so you can just take off the picture and then we can carry on. So I was just talking about one of Beverly's books that she's been reviewing for us, so it's one of our charity champions. And she's saying that he explained the highs, the lows in great detail. And as a reader, a book like this has the ability to touch you in such a way that you feel sad. Or actually laugh along with it. Indeed, I found myself laughing out loud to some parts, Dr. Carney, and that's really funny and naturally calming, which comes across in his patient consultation description. So if you're interested, it's called The Doctor Will See You Now by Dr. Amir Khan, a book review. Are you all settled there, Melanie? You're getting a lot of feedback in the background here. Oh, yeah. Sorry. Yep. All right. Thank you. And so last thing I was going to mention was the Autism Hero Awards. We've been inundated with actual nominations. So if you want to send in your nomination, we've got 12 different categories. It's the website Anna Kennedy Online. So it's www.annakennedyonline.com. And if you check out the Hero Awards, you'll be able to see all the 12 different categories. The closing date is the first week of September. And the actual event itself will be at the Chelsea Harbour Hotel in November. So all of our seven judges are going to have the difficult task of choosing three finalists for each of the categories. I don't know how they're going to do it because there's just so many nominations that have come in. But that's their task. That's what they've chosen to do. And I hope they've got the tissues because usually they end up in tears. So my guests today are Julia Hopper. And now Melanie Leahy, who's finally been able to join us. So I'll just give you a little bit of background of both and then we can have a little chat. So Julia is the mother of three autistic boys, one of whom we lost sadly in July due to suicide and also the sister of an autistic brother who killed himself. Two years ago, she set up a local charity in South End and now have over 730 local SEND families who support and create a local community with the health and lifespan of the community means everything to me since the issues that are being faced clearly reflect a lack of priority, which is killing for too many of our precious loved ones. And Melanie has been a past guest on women's radio station and on Gateway Radio, where I speak once a month with one of my ambassadors, Aston Avery. And Melanie's 20-year-old son Matthew was discovered hanging in his room at the Linden Center in Chelmsford, Essex in November 2012 before being transferred to Broombeam Hospital, where he's pronounced dead shortly after. So we're going to be talking more about the campaign and we're going to be talking about where these ladies are fighting hard with the campaign. So first of all, I'd like to say hello to Julia. Hello, Julia. Hello. Thank you so much for making time for us today. Oh, thank you, Julia, for joining us too. So before we go into any of this and with Melanie, I'd just give people a flavor of who you are, where you're from without talking about anything to do with Orson. Just who is Julia? And then I'll go over to Melanie and say who is Melanie? I'm just a scatty mum from South End who hurt three boys and somewhere along the line, we realized that pretty much all of my family is autistic and that that colors a lot of what we do. And as time goes on, we realize that we're not so easily understood. So we need to engage in the world. So bringing up three beautiful boys very peacefully and happily in a fabulous, chaotic, happy-go-lucky household and feeling very blessed, even though we live with challenges, but everybody does. I don't know anybody who doesn't. And however, we came to a fork in the road where things changed and we needed to become active and we learned a great deal. So how old are you boys? Well, Christopher was 19 and a half. He died last July, as you mentioned. Henry is 18, just 18, and Angelo is 16 in the first week of August. Wow, you've got an Angelo like me. Yeah, I love the name. It's a terrific name and I don't know what Angelo thinks of it. It was one of my uncles that was called Angelo because I come from Italian background. So my husband comes from Irish background. So one was Patrick and one was Angelo. So we had one each. So yeah, I love the name Angelo. I just think it's got quite a warm feel to it. So Melanie, who is Melanie? Who are you, Melanie? Hello Anna, thanks for having me back again. Who's Melanie? Melanie's like Julia, just a mum who is trying to get the best help possible for her son. And now fighting the cause basically to improve services for others and to get answers as to how and why he passed. Have you always lived in Chelmsford in Essex? I lived near Chelmsford, born and bred Chelmsford girl. Left school, studied, become an electronic engineer. Always worked and love working with people and obviously this is my vocation now. So how did you both meet each other? I met Julia over the internet. It's great. Social media is uniting people and bringing us all together. Sadly for reasons, I'd rather have met her for other reasons because she's a lovely, lovely lady. But you know, the internet has brought us together through this campaigning. So Julia, tell me a little bit about the charity that you've set up and when did you set it up and how is it going at the moment? It is absolutely exploding and it's not the kind of thing I would normally do at all. I like to live my life completely under the radar. Totally anonymous kind of person. A shade lazy sometimes, but my son was at a brilliant school and we suffered some bereavement and he became very desperately unwell very quickly. And we needed to access certain services and assessments, which simply were impossible to access and things were not going well. So I began to fight, but I felt as if there was just such opposition to making any progress on behalf of a child like him, which puzzled me. Then I saw an article in our local newspaper that referenced a recent offset visit, which hadn't gone well for send. To my horror, I discovered that from the comments beneath the article that this was a very common pathway and it wasn't just us caught in a strange little cul-de-sac in the system. It was becoming a norm. So completely out of character, I started the charity with Maggie Cleary, who we think has ADHD. She works so hard and we have a team that are building and are wonderful. We'll be building a community and we support parents in meetings or with advice because often there is nobody else and we stand together and we realize that without our voices, we will not have services. It's the same with any group, any need. They need to know that we exist and what our ideas are, what our lived experiences. Without these connections, we can't move forward. So we've been going for a few months and we happened across Melanie's campaign. We found it very powerful and we were also realizing that there really was no dividing line between send and mental health and that we needed to very, very quickly work together because it takes all of us to get together. Melanie has worked so hard for years and created a platform and people now need to join really and work and support that to get to the very last stage, I think. So if people are interested in finding more about the charity and the group that you've set up, what is it called and where can they find you? My charity is named Send the Right Message and we have a web page. If you Google Send the Right Message on Facebook, we have Send the Right Message Community, which is a sort of community magazine. We have a closed page where parents or carers or anybody with a stake can speak confidentially and get advice and support and we can create supportive social networks and people will come to attend meetings with you and support you when you're on your own. Is it just a particular area or is it across the United Kingdom? We are national but we focus on supporting families in South End so we've got to advocacy or attending meetings that would only be South End. Melanie, I understand you're the patron of the group. Why did you want to get involved? Well, I just think it's so important. If children don't get the right care as they're growing up, sadly, what is there for them? The mental health system. Julia is already showing that if the kids are not getting the care as they're growing up, that's the system they're going into. So the two are connected. It's all connected and I just felt it was so important. The work that Julia and her team are doing is incredible. And without doubts, I think they are saving lives and they are helping parents that are in distress daily. Is there an age group of parents that are asking advice about it? Would you say it was a cohort of teenagers? Would you say it was primary? Would you say it was adults? Where is it coming from? Where are the families asking the questions about? It's coming from all ages. Julia, you need to expand on that one better because you're more involved there. It is. And I know Melanie gets to meet lots of them as well and hear their stories. And it really helps us with our work and Melanie's work to see who it is that's likely to enter the services. We know that early intervention is absolutely critical and yet in many cases, children are taking, even when you have red flags at the age of two or three, it can take three, five, maybe even ten years for those children to actually get an EHCP or find themselves in the right setting. And by then it might be too late, but we do have parents who are deeply concerned, who are experiencing some severe issues with their children because of our met need, lack of assessment from the ages of three and six, going into mainstream classes where they don't belong, where they have no business being without any support. But the majority are probably parents of children from about the age of nine all the way up to 25. That's our majority because if need is not identified or met, we begin to see some very classic, very well known to all of us issues arising. And that's when parents really enter a minefield and they need help. OK, thank you. So, Melanie, the last time I spoke to you, I think I remember you secured the support of some solicitors. I can't remember their names, but they agreed to work on a pro bono basis for you. So how far have you got with your statutory public inquiry? Well, since I spoke to you, Anna, I think at that time we were working on a petition. We had two days before Parliament closed in November 18 to get to 100,000. In two days we got 58,000. We got 105,000. We needed to get to debate. We waited a year for that debate to happen. The call on the debate was for a public inquiry, a statutory public inquiry. And what was the statutory? For people listening in that don't know your story, what was the statutory inquiry for? What was it about? OK, so I initially called for a public inquiry into my son's death, my only child. I was told by the parliamentary committee that they didn't do public inquiries into one death. Well, there was actually two at that time. Anyway, so my journey then went out to find other families. We're now at 74 families and growing, calling for this inquiry. And is that in the sixth area? Yes. Now we need to have a statutory inquiry so we have the power to compel witnesses to come in and be interviewed under oath to compel evidence to be revealed to us, which has otherwise been hidden. And lots of people have just left the job, so there's no accountability. And, you know, they're not going to put their hands up and just say, well, I'll come back and answer questions. Right. So at the debate Nadine Doris had already made her or it was no debate. It was a fast because she had her her answer before we even debated anything. And she she called an independent inquiry into impatient deaths across Essex partnership trust. Well, that's not good enough because like Julia's son, it was died in the community and it has no statutory powers. And what I've noticed recently is like the coroner's retired, the head of the Essex County Council's retired, the CEO of the trust is retired, the director of nursing's retired. So none of these people can be called back to be answerable for any misdemeanors that have happened. So it just doesn't, you know, it's not good enough. It's not what we want. So we're all campaigning hard and fast for her to just literally easily change it to a statutory public inquiry. OK, so you said the 75 families in what timeline of the deaths of these very sad and they're like autistic or learning disabilities or it's across the board. I should say maybe 75 percent have some form of autism on the record. Then we have the obviously mental health. So you all come under the same umbrella. We also have patients that, you know, they were they were in the elderly ward for dementia type services. So there's a there's a great cross section of patients that were found but all within the mental health system. And unfortunately, you know, in this work, these last 10 years, nearly now, you know, I found that these are repeat failures that are happening across the nation. So, you know, I've just yesterday changed my Facebook page to failed by mental health services rather than just Essex because we are gaining the support across the nation now to get this put through because nobody anywhere is getting, you know, that nobody is getting accountability across the nation. So, you know, as Julius says to me, we need to make history and we need to have the very first statutory public inquiry into mental health services and truly bring all of it out into the open. It reminds me of I've met I spoken to and spent some time with Margaret Aspino. And I know it's not the same, but the lady with reference to Liverpool and all those tragic deaths, she's very much like you. And she got there in the end. And I can see you getting there because you're just not going to let it go. And I don't see why you should let it go. But what does she need to do to make it a statutory public inquiry? What is it that Nadine Norris needs to do to make it such as something that she's got to say? How does it work? Well, in my mind, she just needs to call it. She's commissioned to cover up independent inquiry. She now needs to, you know, I don't want to be rude, but I think she needs to grow a pair of balls and save some lives because, you know, had I been listened to all them years ago, probably Julius some would still be here if he'd had the help that he needed. And how many others have died in this interim period? And every day that she hangs about and does not call this statutory inquiry, more and more deaths will happen because while there's no accountability, staff will continue to sleep on the job. Staff will continue to falsify records. Staff will continue to cover up the management. Have you got proof, any evidence that you can say, look at this? Yes, yeah, honestly, I mean, these are just issues in my own son's case. I have photographic evidence. I have documents where, you know, Matthew's care plan was falsified after he died and put back into his files. Evidence was destroyed. It's horrendous what's gone on. And that's why, you know, I felt there was enough evidence just to have a public inquiry into just his own single death. But now, having had 75 other families, and these aren't just deaths, these are actually patients that are still surviving, have been abused in the system and failed desperately. The evidence that we have is so damning that if we don't get this inquiry, then somewhere, you know, it will be published and it will come out and it will be in the public domain. And, you know, unless you're involved in these sort of things, you wouldn't believe what goes on. Have you tried to get someone like Panorama or somebody like a body like that to get involved? Yes, we have. And I don't think that's far off, to be honest. But these things like take time. But a half an hour documentary is not going to give enough coverage for the issues that are at... It might be the seed that you need to blow it up, if you want. It may well be. And if anyone from Panorama is listening, we are here. I'm waiting to work with you. OK, thank you. So how do you feel about it, Julia? What do you think about what Melanie said? I think it's the last taboo, isn't it? The final taboo, because while social media is full of memes and things about it's OK not to be OK or mental illnesses and illness like everything else, which of course it is. The reality in terms of service provision is that there is a terror. I don't think people who make decisions are evil or cruel or wicked. They often feel at a loss because I know three... I spoke to Nadine Doris on Thursday and she was the bearer of good news in the sense that she believed suicide rates had declined during the Covid period. Really? Yes, yes. She said she had said this to Robert Peston and a few weeks ago she also repeated it in the meeting on Thursday. And obviously the Office of National Statistics haven't released the figures yet. I think she is going by some figures which are given by 20 percent of local authorities pre-enquest and without scrutiny. So we don't know yet, and we don't know how many attempts there were that didn't succeed. It seems strange, doesn't it, to say succeed in committing suicide? I don't think I've put that point right, but I can't think of any better way to say it. So I think that it must be very hard for someone like Nadine Doris when she would appear to be presented with figures that look like a success story. Although we do know, and it is documented, but within our community of neurodiverse people, autistic people, nobody is doubting that suicide figures haven't skyrocketed during that period. And it didn't help that the social care services were restricted by law and a duty became a power. So we know that a very high number of our community have died in one way or another. And this is our taboo. Who enters the mental health system? Is it you? Is it I? Sort of hypothetically, people never think it's going to be them or their relatives. Well, it could be your beautiful son with no notice. And if it is, you need to be sure that the services he will need to save his life will be there. You can't be sure of that. And there is fear amongst those with responsibility of what to do. They are pumping money in, they tell us. Where is it going? Is it being deployed properly? I don't think so. There are no sense specific mental health clinicians in the community who can assess risk, who can provide appropriate therapy for the appropriate amount of time. And we need to understand how psychiatric, psychotropic medications work amongst our community with our different brains. They tend to suffer from side effects much more. So we are very grateful that Nadine Doris has offered a public inquiry. But again, it only looks into what went on at the Linden Center in Chelmsford for a certain amount of time. Have you got a result back from that, then, from the public inquiry? She's just convening it and they're setting terms of reference at the moment. So for us, we need to impress upon them that we need this inquiry to go that step further. Otherwise, it's not going to be worth the money spent on it. Again, I think Nadine Doris was very perplexed and sort of exhausted the other day. You know, we're pumping money in. Well, that says maybe. But where is it going? And is it saving lives? And is it being other services provided, being commissioned for the right risk groups, et cetera? Do you think you speak into enough grassroots level people rather than sitting in Parliament? I don't think she is at all because she hasn't spoken to me and I sort of blundered in to a meeting and I shot my mouth off and it never wins me, friends. And it never influences people because I'm desperate. I know I've got 90 seconds. I've got to blur it out. I'd rather say it in private over a cup of tea, you know, give me two or three hours. But I know I won't have that luxury. And so what happens is that I'm in danger of coming across as, you know, the crazy woman that runs into the room that's got it all wrong. But thousands and thousands of us are all saying the same thing and all over the UK. And it's our money. It's our taxes that are being pumped out. And my fear is that you may as well not bother because you're not getting it right. That's no criticism because I know that those involved are trying. But we need more people with lived experience to be sat around those tables. And not a tick box exercise where it's just like, oh, we've we have somebody here that's on the spectrum or whatever disability that they're talking about. And it's like, but we're not really listening. Yeah, I qualified in law because I had a brief sort of flirtation, a fascination with that. I loved contracts when I was a musician and I worked briefly in the city before I had my oldest son and I saw shenanigans and I saw smart practice, but I felt like a nun from a convent when I had to operate as a parent or an advocate within the send world because the contradictions and the shenanigans and the difficulties that parents are confronted with are terrifying and traumatizing. And we're not making any headway in terms of good. Well, we are making some headway, but every single child matters, as we all know. So their outcomes are critical for us also in terms of public relations because we want to be able to say, look, this young person, you know, the taxpayer has spent money on and it has been worth it. And so we want to make sure that everything works for for our community, our brilliant community that we're so proud to be connected with. And more and more, we are questioning now our young autistic people have been thrown in assessment and treatment units with metal doors with serving hatches in and that they should be out living in the community. That's exactly right. And it is an outrage that they have suffered. But we must then be triple sure that what we're offering in the community is going to be appropriate and acceptable. And nobody's looking for a luxury option. We want equality, meaning we want the same basics. That's all. So this statutory inquiry must be widened. It must be given statutory sort of level, but it must be widened to include the community or you're wasting your money because we can discharge people from hospital early. Once we realize there is a potential risk of suicide or might be found dead in their rooms. Well, then they and we have seen this to a great extent with many of the people whose children were lost or loved ones were lost. They have died in the community. Now, you could be you could be driving your car along the street and you have to witness someone's death. Well, that's is that's appropriate. You know, this is happening, let's be honest, on quite a large scale. And so we are betraying those who lose their lives and their families. But we're also betraying innocent members of the public who have to, you know, they're on their way to work and they see this happening. It is absolutely heartbreaking. We have to protect everybody. And when you do something right, it's right from every angle. That's how you know it's right. It's the same when you do something that's not right. It will backfire upon you from every angle. So we are we're telling the Dean Doris that we're here. We're ready to work really hard with her. We we know what needs to be done. But this must be extended so that the taxpayers money is used appropriately and it's safeguards are beautiful people, all of them. And it also safeguards our public who will be living in the community and also have the right not to be traumatized and to have peace themselves. Thank you, Julia. So, Melanie, if some parents listening in, obviously we have parents that listen in that, you know, their sons or their daughters may have just been diagnosed or they've just started their journey within the mental health system. What advice would you give to them now you can look back in hindsight to help them navigate the system a little bit better to protect their son or daughter? Well, to be fair, when I first went into the system with Matthew, I struggled to get to get him admitted because I knew I couldn't keep him safe at home. And that is a problem for families. And I would say if you've had an assessment and they're saying, no, no, your son's all right. We're not going to section him or ever. Then ask for another assessment. Ask for another one. When my son finally did get into the system, no one explains it to you. No one. The staff will sit in the office. You arrive. Your son or daughter's taken off to a room with their bag and all their bits. They're meant to be shined around the ward, all the rest of it. And you as a mum are there really scared, wondering what's going to happen. Talk to people like us. Join groups. Join our group. We're now a group of families that are all within and really keen to try and help others because it is a horrible situation to be in. You've probably spent maybe a year, if not more, traumatized by seeing somebody really, really desperate for help and not being able to get it. And then all of a sudden you've got it and you're within this system that just it's a non-advised system. So you have to find out the hard way how it works. Talk to other families. Just get as much information as you possibly can. And just talk to other families that have got that lived experience and they will help you. So Julia, we were chatting briefly just before you came on to the radio show about you think that you may be possibly autistic yourself. Why do you think that? Well, it's highly likely because we come in all different shapes and sizes. And whilst I have never experienced mental illness myself, that really is just my luck. But I was the child that used to trip over a lot, never give me a tray of tea to carry. And I used to walk to school with messy hair, reading a book because I would feel flat unless my brain was receiving information and I couldn't just go for a walk. And I had no buttons on my shirt, so I always wore my jumper in the summer and the winter because I forgot to sew new buttons on. And I didn't do any homework and some of the teachers hated me, but some loved me. You like Marmite, I think. You either take it to me or you don't. What did you find difficult in the classroom when you were doing lessons? My peers spent a lot of time with me and I made them giggle a lot with the things I said. And we were in fits of laughter a lot of the time. And they were able to understand me. I couldn't particularly understand them, but they would launch me as a missile against the teachers because they knew I would really annoy the teachers. I would say, oh, would you like me to explain it to you? You haven't got it quite right. Why don't you give me the chalk and I'll explain whatever it is to you. And I thought I was helping the teacher and I thought the teacher would be pleased. But of course, you just come across as an arrogant prick. But all the others would be in fits of laughter. And we had a great time. My memories of school were amazing. I spent most of their looking out of the window. Or when I was 15, I met a bunch of very incredible gay young men and they took me clubbing in London. And I'd come home at five thirty in the morning, take a shower, go straight to school and fall asleep all day there. But I still got my GCSEs. I don't know how. Learning was effortless. But I began to lose all interest around about the age of 13. It was as if a light went out because nobody really noticed me until one very gifted teacher did. And I'm forever grateful to him. Some teachers are just brilliant. So I'm happy to be who I am. But I know that when I have something important to say, usually everybody gets very pissed off with me because I will just say it bluntly. I mean, no offense. But I, yeah, I'm a bit of a social leper when it comes to attending meetings and telling people what's going on because I just blurted out. I can't find a nice way to say it. So I have to just say it. A lot of parents of sand children are like this. And also when you desperately worry for your child, you rush into a room and you're gambling. And it's so easy to pathologize parents and say, well, no wonder the child is not happy. Blame it on the mother. Or if we use long words, then we must have munch-houses. It's a real minefield for us because we love our children so desperately. And we're trying to communicate just as they are. And we're trying to connect. So we've always asked services to bear in mind that we need reasonable adjustments. We need to stop and not see us through your own filters. See us for who we are. Don't compare us to you. Understand us and work with us just as we are trying to work with you. And I know we also spoke earlier about Nadine Doris and the conversation we had. She had told Robert Peston a few weeks ago that the CAM system was robust and well-resourced. So there are more barriers that we need to break down to show that, no, we don't agree from the service user end. And so that the right services will erase a lot of the problems that this generation has, both neurodiverse and typical. Because we all stand in this together. And we're so grateful for the growing support that we are receiving. And it's undeniable. There is an avalanche of support from all areas. But I'm getting concerned because I just read a speech that Vicky Ford, I think she's MP for Telpsford, Children and Families Minister, I think, and she spoke to a group of directors of social services. And one of the things that she said was that the present send system and expectations are unsustainable and there is a send review. And so we would also like to say that you can't say that the needs of a disabled child are unsustainable. You simply must meet them. That is your job as a human. That is humane. No less is humane or ethical. It's immoral to cut anything at this point. So we would also send that message to her and hope that at some point we can sit around the table with Vicky Ford, with Nadine Doris and knit everything together so that we believe that so much of this can be prevented. We don't want money spent. We don't want a leaky tap, which is what we have at the moment. So can I ask you again about the send the right messages at your charity? What type of support can people find in your network? What type of information? Well, it's peer to peer support. It is the support and resources that we have used and that we have gathered from all over the country. So, for example, there's a great associated called the Society for Neurodiversity and they have created a template letter for parents to use if they want their child to have an autism assessment. And they can often bypass long waiting lists using this template letter. Another one. Yes. And is this on your website as well? Yes. And people can come home to our Facebook closed group or onto our Facebook community group and ask. I know we're saying, are there tips that you have that might work and that might break lock jams that people are caught in for years? Well, yes, there are. And some of the things we share in our closed group are, for example, if your child is not able to access the CAM service for whatever reason, there are alternatives built into law, which you won't be told about. But if you know about them, you may succeed in bypassing the CAM system. And since, under the heading of education in your EHCP, since it trains and dedicates your child, that can be one way to bypass a failing CAM system. And that might help you out. Another alternative is the personal health budget system. We find where I live, for example, you may have a CAM, which is named here as a use. And that is not exactly commissioned to meet the needs of a more complex child with autism suffering from depression or anxiety or whatever. So there is a thing called a personal health budget, which you can apply for as a 28 day protocol and you simply make an application via the EHCP process or otherwise. And you say, my child is showing signs of need and you can't meet that need within your existing NHS offer. And it's all right because the law has filled that gap by saying, therefore, I apply for a personal health budget, please. And I would like a private mental health assessment and I would like the report and recommendations within that report to be met, for example, weekly therapy, specialized, modified autism specific cognitive behavioral therapy for a specialist in the area. So you can, you don't necessarily have to use the CAM system, but nobody will tell you of these ways to bypass these terrible lock jams that you will get trapped in for years on end. I will probably have my wrist metaphorically slapped for telling you this, but I know case handlers have said to me before, I shouldn't really be telling you this, but we could pay for this. And I want to say, no, no, no, you should be telling me this. Yeah, you should be screaming it from the rooftops every time a child comes through your hands trying to get the EHCP together and there's no cams. You should be screaming it from the rooftops because the law wants you to. And some brilliant activists put that law together. And that was the intention was to use it to fill up all of these gaps. There will always be gaps and this is human error, but these laws kick in and fill them so beautifully. However, we're not we're not applying them and we're not using them and we have no excuse not to. There's a child struggling. There's a personal health budget. Yeah. And Melanie, you're going to be writing an article. So some of these links that they're mentioning will be within the article. So you can check it out on the charity website, just to remind you, www dot Anna Kennedy online dot com. Can I ask about social media handles lately? So if people would like to follow you on social media, where can they find you on Facebook or Twitter or Instagram? So, Julia, first, do you have a Facebook? Do you have a Twitter or an Instagram? Yes, I'm all over Twitter. It's great. My name is Julia Caro because Caroline is my middle name. So C A R O Julia Caro. And we also operate from send the right message on Twitter as well. We run south and send crisis on Facebook. We run send the right message to community and we have a send the right message close group and that's us. OK, so those links will be on the charity website in the article. And how about you, Melanie? What are your social media handles? OK, I've made mine quite easy. I have a website called Cure Mental Health, as in C U R E dot com dot UK. And there's a page on there called Join Us. And on there is every link to every account that I have. So if people just go to that website and they can find me from there, that's just nice and easy. Thank you. And is the petition still going? It is. And to be honest, this petition will not get us a debate because we've already had a debate. What it is, this is about raising awareness and spreading the message across the country yet again. And I just feel that, you know, why on earth we're having to do another petition is beyond me. The first one, you know, should have been listened to and answered correctly. But we are. And there it is. It's there on the page as well. Would you say more families are asking for help? This is a question for both of you because of lockdown and everything we've been going through in the last 18 months. Is it more difficult to get support, would you say? Absolutely. And, you know, the experience that I've had is you have a young person. They desperately need help when they are being lucky enough to get an inpatient bed. They have to go on to 14 days isolation. And the isolation has been absolutely brutal for many of them and the families. And, you know, it could be so much kinder than the system could be so much kinder than it is for sure. So if you had a magic wand and I said to you go, Melanie, what would you change within the system that we have at the moment? What could be changed fairly quickly? Accountability. Without accountability, we're not going to get the change because there are people working within the system that should not be. And obviously, we know we're short on staff, but we need the right caliber of staff working within the system. And until that happens, nothing will change. Do you know of any local authorities or health authorities that, you know, are not doing a bad job? You know, they're OK. Have you come across any? Personally, I only work in, you know, I'm only aware of the Essex area. OK. And, you know, even, you know, my son died nine or ten years ago. My partner's just been under the mental health system and I can categorically say it has not improved. Oh, dear. And what about you, Julia? Do you not only know about the Essex area in South End or would you say that there's a particular health authority that's not doing a bad job? You know, they're not brilliant, but they're doing OK. I would love to tell you about those authorities that are doing a brilliant job. And I'm not saying that they don't exist. But all I can tell you is that I have people seven days a week. You know, we work seven days a week. We live off adrenaline and and it's what gets us out of bed. Without this, I wouldn't be able to get out of bed having having been through the traumatic loss of my son. So I keep myself busy and we have people in touch with us seven days a week who are living on an absolute knife edge with their young people and in specialist groups. Some of them are losing their young people in front of me. And that has happened more than once, which is very frustrating. So we can only tell you that things are not working and that this needs to be remedied and that we know how. And I think the reason why it isn't remedied is that carers and parents do not have the liberty and freedom to flock to the town hall with banners. One or two of them can escape for a couple of hours and rob Peter to pay Paul and then come and meet us exhausted and pick up a banner and stand with us for half an hour. But in relation to other groups who need to make change, we are hard set. And that is why we have made so little change in this most crucial of areas. Because I can't think, Anna, of a single area within our society which is suffering so much and ought to be at the absolute top of our agenda. But it is our mainly, although as Melanie says, yes, it is people of all ages and there are neurotypical people as well. But it is our most vulnerable and our most innocent, our most beautiful people who can't speak and whose carers and loved ones are so exhausted and busy caring for them. They don't have the freedom to come and mobilize. And because of that, we as a society are exploiting their weakness and their vulnerability and we are refusing them the right to live. And we can never, ever justify that and hide from that reality. So we are desperate now for this statutory public inquiry and we're ready to move on and move forward. We need to heal. The entire United Kingdom needs to heal. The timing for this is now. Everybody is with us. Nobody has ever said to us, I disagree with you. That's a disgusting idea. And you have to ask why? Nobody. Nobody could disagree with this final push for a statutory public inquiry. We see no basis, no logic for anyone to disagree with it. If anyone can, please answer on a postcard. So both of you working incredibly hard on this campaigning, on the website, on supporting families and because of obviously women's radio station is promoting looking after our own mental health, our own wellbeing. So to stop us from burning out, and I know I am terrible at doing this myself, but what do you do for timeout? What do you do just for you? And I know it's difficult for a lot of families that are one parent families that are really struggling, that have got 6,000 hats that they're wearing. First of all, Julia, what do you do for you? What do you do that's not, you know, just something where it's just I'm Julia, I'm not a mom, I'm not a campaigner, I'm not a charity volunteer, whatever it is that you do. What do you do to help you relax and recharge your batteries? You know, it's all the things I did as a child, and I went on a course about how to recover from trauma, because it was happening locally, and it was brilliant. And I do also without realising what was recommended there, and anybody could do it. In fact, it's the way things smell beautiful perfumes, beautiful music, and you create your own perfumes, or is it that you buy perfumes? I buy, I'm a perfumeaholic, and I love it, and I don't care if it reeks, or if it's vulgar. I've got loads of it, and it brings me great joy, immediate joy, and it works on the brain in ways that I'm not qualified to explain. But it absolutely lifts you because many people will be single parents, as indeed I am, and you can't go off to Barbados for six weeks, not yet, maybe one day. Get the perfume, have the chocolate bar, play the music, have the bubble bath, smile, and you are surrounded by people who love you. Just go find them, and people who you belong with. What type of music are you into? Oh, anything from classical to jazz to 80s music. Don't ask me about anything that came along after 1986. I must say that I do like perfume, but I can't be around a lot of perfume, and I discovered this when I walked through the perfume department. It gave me the most horrific migraine. It just triggers migraines for me, and really bad headaches. When I have a perfume, it has to be very, very light, and I have to use it quite sparingly. So if I was in a room with you, Anna, it would be making me giggle, because I would know how annoying it was, and I'd be happy with my perfume, and I'd be in fits of giggles. And Barry Manilow, by the way. I like Barry Manilow and Elton John. I can't lie. Bermuda Triangle, Copacabana, in the kitchen, pop volume. On dogs, yeah, definitely dogs. I think a lot of people have walked their dogs over lockdown and discovered nature and beautiful parks. So how about you, Melanie? What do you do? I know what your answer is going to be, because you've already told me. What's the answer? I think to be fair, when I'm stressed, I go into OCD mode, and yeah, the house does get a good clean. That hasn't been for a while, so it's getting one at the moment with situations that are around me. But my real love is, I always thought my mum was a proper old lady with a garden, and I think I've turned into her now, because I love my gardening and the flowers. I don't just have one pot. I think I've got about 70 pots around the house at the moment. So that's me. And of course the dog. I mean, the dog is just, people have animals, they are just so therapeutic. Don't answer your back, do they? And they're very loyal. Yeah, and we spent a good couple of hours yesterday, I grew him the dog, and he had a haircut, and he looks just, he's just like a puppy. He keeps me sane, actually, because he comes over and has a cover all the time. Yeah, I do love my garden, but I don't like gardening. I just, the weeds, it's just like, they shouldn't be allowed. No, they shouldn't, they shouldn't. But I did just succumb and got rid of the electric mower, I just bought a petrol one. Oh my God, the job's done in a third of the time. Oh, maybe I need to do that then. Oh God, definitely. Okay, so, but I just want to say to you ladies, thank you very much for talking to me today. And just to remind everybody that the website that Julia runs is called Send The Right Message. Is it message or messages? Message. Send The Right Message, and that's on Facebook, and it's also on Twitter. And Melanie has her page, is it a blog or a website? No, it's actually a website, www.curementalhealth.co.uk Okay, and have you got any appointments or anything with Nadine or anything in the future? Anything that you're grasping on with your fingernails? We have. We're just waiting for the date that she's going to call us and tell us, and perhaps to the nation, that she's calling a statutory public inquiry into Essex Mental Health Services. That date has yet to be fixed, but it will happen. Okay, I'll keep my fingers crossed for you. And as you know, on social media, if you ever need me to retweet things, you know, I do get asked for a lot of things to be retweeted or shared. But if I see it, I will do it. And as you know that I have tried to help you in the past. You've been a great help. I really appreciate that. And if any of your listeners can sign our petition, they'll find that on my website as well. And thank you for sharing everything you do, Anna. You do a wonderful job for everybody. Thank you. And don't forget my petition, everyone. It's who will look after our children when we're no longer around. I've actually been contacted by the Department of Health and Social Care. So just waiting for a date to talk to them. They actually did book a date, but it was when I was going to wait to see my mom. I hadn't seen her for 18 months and I was not going to cancel it. I need to see my mom and I need to see my sister. So we're rearranging another date, so I'll keep everyone posted. So if you can sign my petition, I would really appreciate it. Just to remind you, just type into Google. It's actually if you type in www.change.org forward slash Anna petition. And we're always updating our website. Our newsletter goes out every quarter. So sign up for our free newsletter on Anna Kennedy online. We have our YouTube channel that's looked after one of my autistic ambassadors and it's always getting updated. So please check that out and check out our events page because Autism's Got Talent is coming very soon. So that will be the first week of October, which is at St Ives and then 10 year anniversary, which is October the 16th. I just want to say thank you very much, girls. Thank you very much for sharing your story and keep going, keep fighting and don't give in. Thank you. Thank you, Anna. Thank you.