Hello everyone, this is Anna Kennedy and we’re talking All Things Autism and we have a busy show for you today. Before I introduce my guests, just to remind you about everything that’s going on within the charity. So, once you’ve got talent, we are still looking for performers.

So, if you’re a singer or a dancer or a musician or a poet or an actor and you want to show us your talent, please send it in to Anna Kennedy online just to remind you it’s www.annakennedyonline.com and the closing date is going to be the end of May and the main show is happening in October at the Mermaid Theatre. We’ve also got Autism’s Got Talent that’s going to be happening in the North East. We’re collaborating with Daisy Chain, as you know, I am their ambassador.

We are really excited and we’re going to be announcing all the performers very soon and that will be happening on May the 20th at the Globe Theatre in Stockton. The Autism Hero Awards, all the nominations are rolling in, so if you know somebody that goes the extra mile, so whether they’re a parent, a carer, a professional, a business, we want to hear about them. So, send in your nominations and again, the closing date is the first week in June and then hopefully we will be having the actual 36 finalists travelling down to London in November.

We’re still looking for venues, as you know, everything’s gone up in price now, so we’re looking for the best venue that will suit our needs. And the final event that we have is the Autism Expo where we have four speakers at Brunel University. So there’s Cary Grant, Alfonso Archer, Gemma Long, Ben Pearson, as you know, one of my ambassadors also was on Dragon’s Den and actually won his pitch.

And then we have free clinics, so if you want some advice, whether it’s on behaviour management, whether you want some legal advice on special educational needs or to do with work placement, please come along. We’ve also got exhibition stands, so there’s 25 exhibition stands for you to have a little walk around the network. And the final thing is the Autism Reality Bus.

As you know, there’s always queues for the bus to find out what it’s like to have a sensory overload. Just to remind you as well, one of my ambassadors was on Inside Our Autistic Minds that was hosted by the naturalist Chris Packham. And it’s also still available on BBC iPlayer.

Fantastic programme. I think it should be shown across all schools and universities. One of my ambassadors, Ethan, has said he’s had positive comments since the show and lots of messages saying how well he did, how fantastic he was in his rap.

And I spoke to him actually on Gateway Radio last week and I could see how his confidence has grown since that programme. And the last programme was the programme that I watched with Christine McGinnis Unmasking My Autism, a documentary that I think will help grow conversation around autistic women and girls, a possible light bulb moment for parents of girls struggling at school, of which I speak to many. And again, it’s still available on BBC iPlayer.

So today, my guests, our previous guests that we’ve had throughout the years, but they’ve obviously got some new information to share with us. So we have Julia Hopper. Julia is autistic.

She’s been very active in the autism world for some years now and advocating for individuals and raising awareness of issues that threaten the wellbeing of the community. During this time, sadly, Julia lost her 19-year-old son, Chris. She’s now campaigning with Melanie.

Again, another of our guests focusing on issues relating to the community in the campaign for a statutory public inquiry. We have Melanie. Melanie Lee.

Her son died at the Linden Centre in Broomfield, Chelmsford, a place where he should have been safe. Matthew was 20 when he was detained on 7 November 2012 under the Mental Health Act and was taken to the Secure Mental Health Unit. But just days later, on November 15th, Matthew was found unresponsive in his room and pronounced dead.

In the 10 years since Melanie’s been fighting, and I know I’ve seen this constantly over social media and in the news to find out what happened to her son while he was under the care of the Essex Partnership University NHS Trust and has since been joined by a huge number of bereaved Essex families who are demanding a statutory public inquiry into Essex Mental Health Services. And the final guest we have is Nina Alley, who is a partner of Hodges, Jones and Allen. And I will leave Nina to tell you a little bit more about herself and how she’s supporting, I believe it’s 80 families, with this inquiry and really trying to progress it forward as much as they possibly can.

So hello, everyone. Hello. Hello.

Hello. This is the first time I’ve had three guests all at once. Two have had one, but now we have three.

So this is the new experience for me too. So thank you so much, ladies, for joining me today. So first of all, I’m going to speak to Julia.

So, Julia, tell me a little bit about yourself. Where are you from, the Essex area? And have you always been from the Essex area? Yes, mostly. And it’s unbelievable that, you know, we’re here to talk about this, but we have to.

Yes, based in South End. And very much part of the community throughout South End Essex and the Southeast. So I lost my son, Christopher, in July 2020.

And like me, Christopher was autistic, but he also had LD and epilepsy. He had faced some real challenges with his mental health. And we were learning very quickly along the way what Christopher needed.

And Christopher was admitted to an inpatient unit in April 2020 because of the stresses and challenges he’d faced throughout his life. And also the additional stresses and challenges of the lockdown, which made life very, very hard for our community. And it swamped all of us, really.

So from April 2020 till July 2020, when we lost him, Christopher ricocheted in and out of inpatient units to community teams who didn’t understand him. And it was a very, very stressful time. And I wouldn’t wish it on anybody.

We still don’t totally understand what happened, but we know that Christopher wasn’t understood and I wasn’t heard. And as the parent of an autistic young person, it’s our worst nightmare to not be heard because we know our young people so well and we know our own autism. We are able to provide all manner of answers and we should be members of a team working together to keep the young person safe.

But unfortunately, this was not accepted and it is very much a conclusion that Christopher’s life was lost and the loss of life could have been prevented. Very sadly, our beautiful Christopher has been lost and we cannot get him back, even though we are vindicated because it is understood that we knew Christopher and we understood what was happening. We still can’t get Christopher back.

And so we are very much looking for situations like this not to happen again. We wish that there were processes in place before our young people became ill, such that they could be saved. And the ripple effect of losing our loved ones is huge.

It envelops us as a family, but it also goes right out across our towns, our counties, our nation. So it’s very hard to describe how it feels to have lost someone so precious knowing that they should have and could have been saved. I can’t even imagine how you must be feeling.

I just couldn’t even get my head around it. So I just want to say thank you for sharing such a difficult part of your life. So Melanie, obviously you’ve been on women’s radio station before, but for people who haven’t heard, you can just give us a sort of touched upon it with the introduction.

But if you want to touch upon, you know, with reference to your own son, Matthew. Yes. Hi, Anna.

So Matthew was 20 years old. He was taken to the Linden Centre in Chelmsford, supposedly suffering psychosis. He was taken there to keep him safe.

He died a mere seven days after admission. He phoned the police during that stay to report that he’d been raped, but they were unable to investigate because when they arrived, he’d been heavily medicated and couldn’t speak. And seven and a half years after his passing, I managed to obtain the recording of the telephone call to the police, which shows his voice was very clear.

He sounded very certain and communicated well with them. But by the time they got to him, he was unable to speak. In that time, which, well, it’s now over 10 years, I’ve proved that it all was the most unsafe place he could have been.

I’ve been campaigning for answers into Matthew’s death. Vital evidence was destroyed before the inquest. Police investigations were inadequate.

The coroner’s inquest, which should bring you the answers, just served to bring more questions. And at the end of his inquest in 2015, the coroner at that stage called for an inquiry into Matthew’s death, which failed to manifest the action taken by the trust ruling board after his death to investigate concerns and improve safety was inadequate. It lacked an appropriate sense of urgency and more deaths ensued.

And, you know, the failure to take patient and family complaints seriously, it’s now an issue for public scrutiny. I mean, questions were raised from the very day Matthew died. I managed to secure the largest ever civil fine for health and safety failings where they will find £1.5 million.

And no accountability come from that. I did a petition calling for a public inquiry into Matthew’s death. I raised 105,000 plus signatures, UK signatures, people from all across our nation that have, you know, had touched with autism, with Alzheimer’s, with mental health.

They write to me regularly. They sign this petition. We had a debate calling for the inquiry and the government refused it.

On the basis that at that time it was only two deaths, they said we do not do public inquiries into just two deaths. So I went out on the search for other families. I now have over 80 plus families that are working on the campaign.

We were offered an independent inquiry with no statutory powers by the government, which is currently running. And we refused to engage and we are still calling for the statutory powers so we can bring staff in under oath to find out what has been going so long. So, what are the two thousand deaths? Two thousand.

Do you feel that you’re stronger together now and you feel that you’re an unstoppable force, if you like? Absolutely. We are so determined because the longer this goes on when they deny what we’re asking for more, certainly more people are dying. and even while this inquiry has been running I think our latest inpatient death was in January of this year.

Why is that happening? An inquiry is ongoing and still people are dying as inpatients. We know thousands are dying in the community but to die as an inpatient during an inquiry when safety should be heightened, patients should be safe anyway but you know you think that things would be that safe that nobody could do any injury to themselves at this stage but sadly they are. So how did you and Julia meet? I don’t know, Julia answer that one.

It was it was magical really because I had become involved in local send issues very unwillingly because I don’t want to be seen as difficult or um to stand up to speak I didn’t want to get on with my life but unfortunately I could see that there were some very very serious issues locally and so I’d been trained legally and I could see that the law was was was it mysterious and absent here in in send and there were many reasons for that and so we became quite vocal. We got onto social media, we gathered together a large group of families and we supported them and then Melanie popped up on social media and I had lost my brother when he was 19 and my my son was named after him and it was very much my wish that my children would be safe gradually as a family. We had realised that my brother was very likely to be autistic and my wider family are very much affected by these issues as well so we could see that they were quite genetic and that we needed to become involved and take some responsibility to make sure things were as safe as they could but for children young people for everybody really so I could see that there were strong parallels between what Melanie was trying to achieve and what we were seeing happening on the ground so as a group we we leapt we jumped on Melanie and we supported her but then very many groups have done and now all throughout the UK other parallel groups have have connected so it’s you know it’s not just us yes I lost my son so that that makes me a bit more sadly a bit more central and I give more of my time to this.

There are many eyes watching and many people are making connections so whilst it is the most tragic thing to lose your son while you are helping somebody campaign because you understand the parallels and to be powerless to save your son even though you know what’s going on and my thoughts are that if I was not able to save my son knowing what I knew I needed to put a hell of a lot of energy in to support this campaign of Melanie’s she was one woman that stood up many years ago and she gave she has given everything to make sure that these issues are highlighted and that our young people can be safe it’s all we can do now. Interjecting can I just ask why do you think what do you think it is with reference to the hospitals and the mental health unit why is it that our vulnerable children and adults are dying what what are the feelings what is it is it to do with training is it to do with funding what do you feel that that you could share that you know you’re not going to sort of put yourself in and compromise in permission position what do you think it is it’s all of those things so we have a multiplicity of beautiful laws that were created to bulk down safety and yet they are not really implemented so that’s a huge obstacle and there is not much awareness of what goes on behind closed doors when a family is struggling with a desperately ill young person and when people are in these impatient units there is um there’s a shroud of mystery around it so we can’t ensure that things are improved on that basis and obviously being very active in the send world which is you know but the younger that the young children trying to get ehcp’s and to get the right support at the right times these are issues which feed in to melanie’s campaign very sadly um and we see it on a daily basis our phones ring off the hook with parents of very young children at the very beginning of their journey trying to get things right um but they are surrounded by huge obstacles and then at a later date and in many cases not much later those young people will end up in these uh impatient units or desperately trying to connect to community teams which very often will refuse to accept them on the basis of their autism which is obviously discriminatory but there isn’t anything we can do about it unless we go to court and access to justice is very limited so the imperative is is pretty high okay we’ve got quite a bit i’d like to get through because i want to really get to so if i can introduce you now nina please if that’s okay with you so you’re nina allie and you’re working with i believe 80 families could you possibly tell us what the current position is with the ongoing inquiry at the moment and what is the inquiry absolutely um sorry i should say hello anna and thank you so much for this opportunity to talk about it yes so um the position is that i and a colleague here are representing and supporting some 83 plus and when i say 83 plus it’s simply because unfortunately the calls continue to come in so it does seem to be a growing number and all of these families um you know with with people like julia and melanie at the forefront have been campaigning now for years for this statutory inquiry were then following all the effort that Melanie put in in getting this petition debated in parliament in November 2020 it was the then health minister Nadine Doris commissioned an independent inquiry rather than give the families what they asked for which was a statutory one and i can talk about the difference between the two more in a minute if you would like me to yeah but what is okay it’s just that the reason the families want a statutory inquiry and nothing the reason why nothing less will do is because only a statutory inquiry as the name implies carries with it statutory i legal powers which compel or give the inquiry team the power to compel evidence to be brought forward and witness witnesses compel to attend and then compel to give their evidence under oath now the big difference between a non-statutory inquiry is the current inquiry is non-statutory which means that it has no power whatsoever it can be conducted in any way which it chooses there’s no kind of governing framework people are invited to attend um now you know your listeners may be you know curious as to why the question would be well why would somebody who is being potentially accused of wrongdoing potentially accused of having failed vulnerable people be willing to stick their hand up and say yes i’m going to come along and give evidence of this inquiry um so so that’s the key difference is that there is just simply no degree of accountability no real degree of scrutiny and i don’t know if that answers your question but in terms of where we are now that is also really uh important because what’s happened is this rather unusual step has been taken by the chair of the current inquiry dr strafty some two years after this inquiry has been up and running she has come forward in an open letter said effectively the current inquiry without any statutory power is not going to be able to deliver its remit i need to put it in more simple language it’s not fit for purpose because of the 14 000 staff that were approached to you know invited to come and give evidence uh 11 came forward that’s 14 000 that’s right wow january since then there’s been numerous meetings numerous um you know calls by the families and myself and my colleague here to try and now you know persuade the government to finally do the right thing get this inquiry converted i mean what more do we need the chair herself is saying it’s not fit for purpose so what is the sticking point why why are they not what what is it about the whole thing that they’re not moving forward what’s the sticking point is anybody’s guess Anna but we can only speculate you know statutory inquiries of necessity are going to cost more money and they’re going to take more time because the statutory power will give the inquiry team the ability to look at all the staff involved throughout all the relevant years and approach them and ask them to attend not in their generic oh would you like to come along with your evidence but actually you are required to come along and give evidence now that will take some time people have moved around and this is kind of the big concerns that people like Melanie and Julia have is that the people who are looking after their loved ones at a time have moved on some of them have been promoted have left the service how can you get to the truth of what happened until you actually call the people who are around at a time and ask them for other questions okay so even like the paper there’s no paperwork that you can you know i mean you i need this paperwork just get it to us now we are you saying the i hear the correctly that Melanie said that some of it’s possibly been destroyed Anna i mean the the last four inquests that i’ve been to um we have a new coroner here in Essex and he has put picked up clear evidence that the trust that the they haven’t been given full disclosure to investigators before the inquest Dr Strathee herself has said that she is struggling to get full disclosure from the trust so you know the only way that you can force disclosure of information is if she has the statutory powers and calls the people in to give it okay so if that’s that’s a treat it just that’s just the be all and end all really isn’t it if you’ve just you’ve just got to have it yeah it’s important a lot of you know and the um ceo is saying i’ve instructed all my directors now to talk to the inquiry and to be open of ice well the directors that are involved in over the last 20 years have left so they cannot be called back unless there’s statutory powers they no longer work for the energy yeah yeah we’ve got to ensure that all those involved in the top down and for the relevant period are located and compelled to attend and answer for what has happened here that you know the the authorities that were commissioning the services and had had the power to intervene to stop um failings to continue to happen in you know that they’re looked at why why were these areas not picked up you know has anything changed do you think since obviously you’re highlighting this campaign do you think procedures are changing i’ll tell you what’s changed is a lot of staff are running and leaving the job because they’re frightened if they work for the nhs they can be called in if they don’t if they don’t answer questions it looks bad on them so they’re leaving they’re walking away they’re fleeing the country and what has actually changed that is quite significant is the death toll the death toll is continuing to rise and it will continue to rise i’m confident in that until we have changed we have accountability and we have the justice okay the issue here is the issue here really is just to sort of highlight what Melanie and Julie are saying is that okay you have got to get to the bottom of what happened what went wrong and why before you can possibly fix it we’re not talking about a few rogue staff at local level we’re talking about something you know we’ve been seeing and sadly myself you know i’m a solicitor i’m not one of you know i’m not somebody who’s you know suffered the tragic loss that these uh my clients have but myself and my colleague who run these sort of cases are tired of time and time again inquest after inquest inquest after inquest case after case we hear lessons will be learned lessons have been learned nothing’s been learned as far as i can see because i have not seen any changes i’m getting emails you know as we speak from families from people who are in hospital from people who have left hospital saying as more and more people hear about this this happened to me now how is that possible we’ve even had a documentary aired on national tv with secret filming that’s not you know we didn’t we’re not responsible for that that’s something independent of us but that program highlighted you know with a bleakness that was painful to watch i mean it brought tears to most viewers eyes seeing the sort of things that were going on and that has happening whilst there’s an inquiry ongoing so there’s a spotlight shining and yet still nothing’s changing was that the winter born are you talking about something else we had sorry sorry sorry the winter born inquiry um that are you talking about another documentary those documentary dispatches uh and it was aired in october i’ll rise here a recent one right dispatches are award safe yeah okay so if you were to be given the statutory powers what do you hope it will achieve and how long do you think it’s going to take to get to the result that you want i think um these ladies are going to get a statutory inquiry that’s for sure they’re not they’re not they’re not quitting once the statutory once the inquiry has been converted with statutory power i’m thinking probably two to three years because as i suspect a lot more families will come forward the 83 plus that you know we have on our books are refusing to engage with the inquiry in its current form because they believe it would be toothless and just a waste of their time i think even some of i’ve had a couple of families who have you have engaged with the independent inquiry who have now stepped down and said actually you know what they’re going to disengage because they’ve realized because there’s been such a lot of misinformation about inquiries where public is used rather too loosely public and statutory are not interchangeable in that sense because i think even doctor strategies called it public inquiry what’s going on currently is a non-statutory inquiry which has no statutory powers what will change i’m sorry i’ve slightly gone off point there haven’t i forgive me it’s um is what we what will happen is that they’ll they can use all the evidence they’ve gathered so far for sure but they’ll have to issue new edicts for all the evidence at all the institutions for all the years that we’re concerned about to be presented and to be presented within a certain timeline and if it’s not presented then probably flawed evidence setting up exactly why this information is not available as a starting point then there’s the gathering of evidence from all of the families individually and i can say for the 83 odds that we represent there’s a whole wealth of evidence i mean i have with just one client a suitcase full of notebooks and diaries and video evidence and all of that so that one will have to be collated and then of course there’s another tranche which will be looking at all the or hearing evidence from all the stuff from bottom to the top up and then of course we will have to hear from experts in terms of it’s all very well we examine what on earth went wrong but then we have to try and find out why things went wrong and one for example just to give an example is that is it the case you know there’s so many multi layers of issues but is it the case that perhaps in some of our young people they’re being misdiagnosed and for example in terms of autism i think what is emerging i this is only anecdotal and i’m not a scientist or a psychologist or a psychiatrist but it does look rather like there may be autism may be a lot more prevalent amongst the young people who are presenting with health problems and it’s not being picked up which is maybe aggravating the problem because rather than getting the care and treatment that they need there’s conditions are actually being made much worse that’s right i was just going to say that was highlighted with eating disorder for women on the christine beginnings where they were basically admitted because of their eating disorder and the autism wasn’t picked up so obviously they have autism and eating disorder that’s a completely different kettle of fish so we’re going right through sort of nitty-gritty stuff what i want to just peel back now the people listening melanie talk to me about your son what was he like just because obviously we’re going through all of the legal stuff and everything that you’re going through now which is obviously really important but for people listening in yeah time to be a little bit about matthew what was he like matthew was um kind compassionate funny um loved the outdoors superb skia we lived on a boat for the first eight years of his life that boy could swim before he could walk um he had to in case i dropped him off the side of the pontoon so he’d been very very young um he actually become a lifeguard in his latter years and saved two people’s lives oh saved him from drowning he loved it he just loved everything about the water uh obviously when he got poorly um i didn’t understand what was going on um there’s no education as a parent you have to learn as you go back my learning was in the end um crying out for you know we needed help and that’s how matthew ended up in the psychiatric system which helped me led to his death but um yeah as a person he taught me an awful lot he was clever no i i i listened to julia at times and um i do believe that matthew had um many autistic traits he he was just a natural with mathematics um he at times found it hard to interact with others so he went through periods of self-isolation um there’s just a lot of different factors there so you know he was never assessed he you know even i think julia was telling me the um speech development um is uh you know that he didn’t start talking till he was gone too that that can be one of the early signs but nobody ever picked it up and i i never even knew what autism was until i met julia yourselves and started talking about it and then it was like light bulb moments you know so um yeah there was missed opportunities for his life but he managed to mask well and until he got you know older and then i think depression fitted stepped him when he couldn’t go to college where his friends got into the class he wasn’t eating right and then his records show that he had a b12 deficiency um possible celiac disease and folate deficiency which um now from my studies i know that looking at his records um could have been great contributory factors from why he went into psychosis so it’s all very very sad really for he was such a promising individual yeah well thank you for sharing that and julia before we talk about your son you’ve got the diagnosis of autism when were you diagnosed and it’s because it’s um all over the media at the moment about adults and autism and women so i’m just interested in sharing and what was it like for you when were you diagnosed and did you feel like a big weight had been lifted once you were diagnosed it felt uh i felt a sense of warmth because i i i’ve always known i was autistic as soon as i understood what autism was but i didn’t feel i needed a label uh because i didn’t necessarily need support although throughout my life i have faced huge challenges but you assume that everybody else’s brain is the same um and of course it isn’t but you won’t know that so you learn to master those challenges and it is it’s very hard and you develop a strength and a way of coping and living and navigating the world so now when people are diagnosed we say congratulations you join our community you are important and you are valued and we we tend to mix uh within our community because we don’t want to be stigmatized when we meet them to think oh is she strange will she do something ever so odd we’ve noticed no sorry not really um but there’s such a feeling of acceptance and um and it’s very humbling and it’s very moving because christopher was diagnosed quite young because he had great challenges and he required massive amounts of scaffolding which became normal to everybody who knew him but when you then send your young person into a service that should understand him more than you do because they are trained and we’re always led to believe that you know the word professional is a very esteemed and important word and then know better than you um and it’s a false feeling of safety so christopher was exceptionally beautiful and i am proud to be autistic i’m welling up because it does matter and it’s not something i want to hide um because other people have paid a very high price for being autistic autistic people have contributed in myriad ways towards society and will carry on doing so they are very humble people they are very fair people and to fail them and hurt them without cause although i can’t think of a cause it’s it’s an outrage it’s heartbreaking being with christopher uh beauty um covered you when you were in a room with him a sense of serenity and peace um what were his interests music okay a little bit of swearing okay kindness gentleness never wanting to take up more than his fair share on on the earth never never lying um just wanting loving life and loving the world with such a passion and just wanting to be a part of it and having to fight tooth and nail with such dignity in order to do that and he represents to me the most vulnerable people we have and they deserve our protection when they need it they are not and should not be victims they should be our equals and they should be as safe as anybody else but uh there were myriad things that went wrong but just one i will highlight because it it really speaks to why we need this inquiry christopher’s medical notes at inquest all appeared to be legitimate um and it would have appeared that christopher’s death was unforeseeable although it was very much foreseeable um and i made it very clear throughout the the months that he was ill that he would die unless things changed but his medical his clinical notes appeared to be spickety spot and yet at the inquest when we got hold of internal emails they told a completely different story so a group of people quite a large group of people who are involved in christopher’s case from from different agencies were openly saying things like god forbid we end up in the coroner’s court with this one and they said that christopher would die unless something was done and in fact nothing was done so it’s evidence like this that we need to see because we keep asking questions why is this happening well one of the answers is that in fact everybody knew that christopher was going to die but nothing was done the people involved are still in post um still repeating these behaviors and what is called a culture a culture the culture needs to change that is what is said in actual fact it is discrimination and a sense that one thing’s happened behind closed doors or shrouded in mystery some of which is contrived that we cannot get the answers we need um and and this issue is so central that without the statutory status for an inquiry we simply won’t be able to move forward and all of us are longing to engage absolutely desperate and we have such a vast amount of expertise and evidence to provide um and it is very frustrating that we are waiting to provide it we’re waiting for an escalation and whether we are losing people thank you julia nina can i ask from the 80 odd cases that you have what sort of age groups are looking at and are they all based in essex they are all based in essex the age group is predominantly young um yeah much like melanie and julia’s sort of age group we do have some parents so some people in their 50s and 60s so where we’re acting for their their children excuse me but no very much tend to be younger people with a few older ones as well i don’t think age is the issue here i think it’s it’s vulnerability okay because mental health as we know mental health issues can affect anyone and everyone unfortunately there does seem to be a prevalence amongst young people another story is very similar everyone’s story very similar there are definitely uh themes running throughout yes okay so what are your main concerns do you think if the government despite everything that you’re doing dig their heels in and then they refuse to convert what what can you do what will you do and i’m going to ask this with nina then i’ll ask it of julia and then i’ll ask it of melanie before i ask answer that question anna if i may just quickly say that i think you know i think it is important to have some positive thread to all of this and i do believe because your next question sort of presupposes that it won’t happen but if we can get the statutory inquiry that is the opening the door to understanding what went wrong so that we can then fix this yeah there is no problem that doesn’t have a solution it just takes the will and then a sort of you know an allocation of the appropriate resources so it can be done it should be done what will happen if it’s not done i think we just continue because there is no way that these ladies uh the 83 families and julia and melanie you can can answer for themselves but the other families have made it very clear that they’re not going to stop until they get a statutory inquiry because what is the point of the current one you have a few families and minimal staff and a complete falsity of evidence what is that inquiry going to show what is that report going to show in a in a it’s due out this year what is dr straffney going to be able to say not much how will anything be learned from that nothing will be learned okay thank you so melanie so what do you think the outcome is going to be if say yes then obviously that’s fantastic it can’t bring everyone back but at least you you’ve got some sort of a solution but if it’s a no you do you think you’ve got the energy to fight on i have no choice there’s no choice but to fight on anna because we can’t stop until our objective are achieved we owe it to our generations but what what come to light um we had a meeting with dr straffney during that meeting i touched on some of that evidence that we are holding and an email has come back from one of the ladies that was i heard that was in that meeting saying we’ve raised this this this this issue that you mentioned as um safeguarding and we’re going to let the trust know and uh the question comes like hold on you mean in two years of investigating to date you haven’t come up with those issues because the issues that we were showing evidence to are repeated within our deaths and that itself you know and we’re saying that any evidence that comes from this non-statutory inquiry i wrote in an open letter to her will only scrape the surface because she hasn’t got all the evidence and it won’t stop the deaths occurring and she said you know that is her main issue to stop this occurring so now we cannot stop until we we get the statutory powers and the conversion put through okay if you don’t mind me asking this is this costing a lot for you like how are you fundraising for it all anna no i mean i have had some very nice people support um a lot of this is not financially um expensive it’s time right ocean and that’s it because you know my my computer like yours your phone is always on the go your messages are always on the go um so that’s that’s the cost and obviously it’s been family cost as well because i’ve since lost my partner to the same trust yeah and that’s another story i won’t go into now so um hence uh you know this is now my life and i’m sure you will get there because obviously i’ve known you for how many years now is it five years i can’t even remember but probably and this whole journey has been started obviously 2012 yeah it’s it’s yeah it’s a long long time it is um so julia what what are your main concerns and what do you think the outcome will be the government despite everything dig their heels in and refuse to convert have you got the energy to keep fighting i don’t even ask myself that question because there will there is no question whether i have the energy or not i won’t give up till the day i drop dead it’s that simple and the reason for that is that i owe a debt to my community and to the wider community in the country in which i live we can’t um offload our duty as citizens to the government and blame the government for everything we have to engage and engage we will we know that what we’re asking is right so no there is there’s no question and what is very encouraging is that we have seen a vast groundswell of support for us sometimes it feels very frightening to campaign um but there is huge support behind us um two was it two years ago melanie we got 107 000 signatures for our petition and they’ve moved on very much since then so not only will we never give up but we are now joined by thousands of people supporting us holding us up above their heads who work very hard just as we do to support what we do and no i i’ll never i’ll never let them down melanie never will i never will and none of us will can i just say anna i thought i’ve got a site which is www.curymentalhealth.co.uk there’s a join us link on there so anybody that’s had anyone failed in essex or is having care in essex because we know people come from across the nation to be put in in placement in essex you know to please um let the links are there for the solicitors there all the links for the web page for the facebook social media and if if people want to get involved please to write to their MPs and literally ask the MPs to push forward in parliament to to push steve barkley encourage steve barkley to add the statutory powers they’re currently falling we’ve got vicki ford mp supporting us john wittingdale pretty patel um sam tarry mp barbecue the mp so you know the MPs are now starting to come our way speak out but we need more and we need more pressure put on across the nation because ultimately anything we can make changes up here in essex and learn from essex it will go we will force that change across the nation thank you those links will be on the charity website as well thank you yeah so if you um obviously melanie um julie and julia sorry and uh nina will be um the article will be up on the charity website with links and any useful information a little bit about what they’ve spoken about so please check out the charity website on the latest news so that’s www.anna kennedy online.com now women’s radio station is a station that promotes mental health and well-being and obviously this must take its toll on you all um fighting so what do you do to recharge your batteries and as you know i have a campaign called take five we have our well-being ambassador that came on board during lockdown but obviously it was caused a lot of mental health and well-being issues as well as parents trying to struggle to keep their kids who are not going to school or adults not going into work or whatever it was that they were struggling with so what do you do to keep yourself going what’s your take five so let’s start off with julia what’s your take five have to be very very clear what i eat um nutrition is really important to keep you healthy okay i urge everybody to focus on that as a absolute priority and sleep if you can sleep but if you can but from a very young age um i made music and music is the way i regulate my emotions and i know there are many autistic musicians some very successful and i would also love to explore that further for therapy for young people but yes music’s critical and exercise just walk yeah walking is good good for me as well good stress buster and as you know um when i have a mad five minutes i dance in the office one day somebody’s gonna walk in with a post but hey i take it when the mood takes me so melanie what do you do for relaxation what do you do for your five minutes i do that lovely walk i have a lovely doggy he’s 13 now but he still wants to go out and shortly after this this radio station i’ll be taking him oh is it like a stress buster what you know what i find really difficult when people say oh do yoga i can’t i just can’t do it i’m trapped it just doesn’t work for me to sort of help me i know obviously it helps others but i’ve really tried hard and it just doesn’t work have you ever tried anything like that to me yes i do yoga meditation now and then i go out and garden and scream i i decorate and scrape walls i just keep busy yeah i think yeah okay so how about you nina well all of the above i think julia was really onto something with nutrition i think eating well is is so very important and i think in terms of real stress busting stuff there’s got to be exercise dancing walking running whatever you know whatever floats your boat yeah yes i think physical activity really does help oh thank you for that so um just to remind everybody um because these books are really really useful rebecca doofus sent me in um autism identity and me and as you know i always highlight books in the program so it’s a practical workbook to empower autistic children and young people aged 10 plus it’s available on uh routelage so um rebecca’s book is an innovative as it helps young autistic people on their autism diagnosis using non-medical jargon and empowering yet factual information rebecca has created a non-judgmental a non-infantilized place to not only support but explore what comes next and that’s carly jones mbe who i know carly very well so rebecca is an experienced psychology degree and a master’s in autism and education she has many years of experience working with students and educators in both mainstream and specialist education settings as well as within local authority and education services so she has a practical workbook to empower autistic children and young people aged 10 and then a professional and parent guide so to support for a positive understanding of autistic identity again by rebecca doofus spelt d u double f u s available on routelage spelt r o u t l e d g e so again um this is autism identity and me not only reflects rebecca’s ethos it is structured easy to follow informative and invaluable text which covers all areas of autism from what it actually is through to every element of the day-to-day life and of autistic child i’ll be using this book in my own practice and then online there are resources that actually go along with the book so please check it out it’s a speechmark book and available on routelage and they are priced on here yeah they haven’t but um hey i’m sure it will be on um the website so again don’t forget keep checking the charity website www.anna kennedy online.com always latest news has been updated every day of the week almost by um one of my ambassadors and patrons lauren and we’re also um if you want to read a little bit about our ambassadors or if you want to read about our charity patrons or our champions all the information is on the charity website if you want to speak you would like to be a guest on women’s radio please send me a message i just need to have a little bio about yourself questions that you would like me to ask you and then we’ll hopefully be able to put you in so um if you would like to speak so whether you’re a professional whether you’re a parent whether you’re a carer whether you’re a sibling if you feel that you want to speak on the radio that’s absolutely fine i’d love to chat to you i also do gateway radio once a month and that’s in essex and that’s with my fantastic ambassador aston aston avery um we’ve been doing it for quite a few years now we have two or three guests on the show every month and then lots of information we share we don’t only just talk about autism we talk about dance because we love dance we love strictly and um yeah so that’s something that’s i’m passionate about as well so it’s just something that’s not autism related so ladies is there anything else that you would like to share we’ve got a few minutes left so let’s start with uh melanie so if you could go back would you do anything different and if you did with hindsight what would it be wow i wouldn’t say i wouldn’t have allowed them to take Matthew into services full stock yeah yeah it’s just like and what about um because you said you after chatting with myself and chatting with julia you know with reference to diagnosis do you think you might have gone a little bit earlier to to to even just to chat to somebody about what you felt you know what you’ve been hearing about that you may be on the spectrum or did you have ADHD well definitely i i don’t know you know but you know when there were when i talked to julia and i explained some of um Matthew’s behaviors she said oh that’s classic autism that’s classic autism you know and it was like i was ticking boxes all the time in the conversation we were having um and then when i was talking at a later date about the symptoms Matthew had in his 20s um pains in his stomach um and hallucinations and stuff like that and i was talking to lady about b12 deficiency and it wasn’t until we got his records out she’s going we were ticking boxes again for just the simple b12 deficiency cause it could have caused his issues so you know the doctors were saying in the end you know we were we were we needed to examine um his physical conditions but obviously you get straight in the system and you’re just labeled you’re mentally ill that’s it get in the corner and um we treat you like shit basically um but oh i don’t know i’m i suppose i’m still very angry that things yeah work out the way they should have done diagnosis you know there’s still a lot of information about that throughout the media and i it seems to be the waiting list is getting longer and longer and i i’ve said this since both my sons were diagnosed in the 90s and people are on average now it’s sort of three years five years they’re waiting for a diagnosis the waiting list is just like as long as your arm it’s just so frustrating because then you know obviously the schools are not knowing what they’re dealing with so not to know what you know um support that needs to be put in place and then obviously when they’re going home they’re frustrated and then you know mum’s getting it or siblings or and it’s just a piece of circle and then you read all these books as i’ve always i’ve said millions of times about early intervention and how crucial it is and it is it is crucial because a lot of these children if they get the support early on you know if they could make such a difference to their lives so um yeah i just think the world that we’re living in at the moment is without sounding like a doom and gloom i’m not really like that but it’s just very uncertain you know cost of living it’s just like i used to watch the news i don’t really watch it that much now because it’s just full of doom and gloom sorry what are we going to say i’ll say it’s depressing to watch the news yeah i’ve spoken to people where they just don’t watch it anymore they put comedy programmes on in the morning yeah so what about you julia what would you have done would you have done anything differently even within your own life you know i’m not sure if you were diagnosed late in life and if somebody is listening and they think they may be on the spectrum what advice would you give them even if you don’t think that you need support because you have a job a family a car three children all of those things you’re part of your community and your community needs you because other groups are strong and vocal and they have money to gain equality and a modicum of safety we won’t we won’t achieve that without uh everybody standing up to be counted so join your community support your community support our call for a statutory public inquiry because you your children your grandchildren uh will need to be safe and they will need to be equal we just can’t achieve that without this statutory public inquiry the first in our nation’s history so i urge you to contact your MP stand with us we need you and together we are strong um we have to ask is there a template letter that if they wanted to send to their MP about the campaign do you have a template letter that they could use and they just need to slot in what’s applicable for them absolutely yes i mean we we’ve um it’s used by our families and we certainly can share that can i just um add to that that it’s you know to all of your listeners who who have any of these sort of problems it is really in fact in those who don’t or don’t think that they have any mental health issues of any kind i think mental health is going to be the next pandemic it’s you know i don’t think anybody should be sitting complacent thinking oh this could never happen to me or someone that i love we all suffer with mental health issues from time to time it’s a question of degree and severity and we need to have health services in place that are fit to then support that those problems so it is really a problem that you know we need to solve for everyone i think that’s the point that julia sort of keeps making is this is not just their issue it’s not a small issue or a small you know concerning a small number of people yeah i think the thing is as well as i’ve said previously before parents the question at the back of their minds and listening to this is who’s going to look after my loved one when i’m no longer around and obviously you know i have that petition and you know it’s still ongoing but that’s the question at the back of everyone’s mind because they hear these stories and then it’s just so frightening and it’s just we could talk forever i just want to say thank you for sharing such a difficult topic and i wish from the bottom of my heart that you get the answer that you deserve and it’s not for the want of trying so i just want to say thank you so much for sharing and um just keep going keep biting and if you want me to share anything on social media as you know just keep tagging me and i’ll keep retweeting it for you or whatever it is i can do to help so thank you ladies thank you for taking the time out thank you Anna thank you thank you so again um you know information will be on the charity website with the link if you want to help with the campaign so it’s just to remind you www.anna kennedy online.com so have a good week everyone keep going one day at a time some days good some days not so good bye bye bye bye