Positive Support Experiences in Halton

Uh, OK, can I, uh, get, um, you to introduce yourselves? Um, the Kizza Hi, Megan. Hi, Nikita. Could you tell me a little bit about yourselves? Um, I'm 25 autistic and mentally ill. I was diagnosed in when I was 15

Mhm. They, uh, come out as you like. So what are you passionate about? What you like doing Helping people, I guess, Um, I've kind of been in many different therapies, many different mental health services, and I've been failed many times, so I'm more passionate about, you know, making sure people don't get failed and helping them supporting them for it

I've done many courses in mental health and, you know, adverse childhood experiences, stuff like that just to try support. I'm a single mom as well. So I'm doing, you know, supporting my child, making sure he gets the proper support and everything

Yeah. Thank you for sharing that. Megan, um, can I ask you to share a little bit about what you're passionate about? What you enjoy doing, OK? I don't know

I don't really I don't do much. Um, I don't know. I like Harry Potter, but I think that's about it

To be honest. What do you like about Harry Potter? I don't know. I've I've liked it for a good few years

Now, I just I don't know what it is about it, but I think what I like about it is that I can get lost in it. I I do audio books. I don't do I find it difficult to concentrate to read

So I just finished the last one, and I don't read the books because I'm dyslexic, so I just I just watch the film. You have recently found books that are far dyslexic. Um, a WP helped you find them, didn't they? In the library? Yeah

That's really a good example of, like, good support. Um, Megan, I'm just gonna say like, we can only see a little half of your face. Um, brilliant

Um, and you might be only wanna show half of your face. That's absolutely fine. But it it I just wanted to let you know

So I've got a few questions. So we're doing this work with Horton to understand the experiences of people with a learning disability, autistic people, their family members. So first question that we wanted to explore, um and please do jump in

Whoever wants to respond to this, um, can you share with me a recent positive experience of support or health and of health and social care services in Halton? Um, why was it positive and how important? Um, and what impact did it have on you on your life? Um, I've I've done some notes, so I wrote down a WP. Obviously, um, Dave, not long since it started. They started, I think August, um, but I've known Emma, who runs it, um, through a different service

And as soon as she ran it, you know, I knew I'd join her because she's great. She's the only I've paid her for therapy. She's the only therapist I've actually seen

And I've seen, you know, NHS ones who is actually autism aware. You know, she I used to have about 10 panic attacks a day. And what I didn't realise were they? Some of them were sensory overloads and meltdowns

So now that you know, she's helped me identify that and be aware of it, you know, I've been able to regulate myself. I'm actually aware of my sensory needs when I was diagnosed, you know, I was given a piece of paper to say, Here's your diagnosis and that's it. You know, you're just shoved off with it

There's no explanation. There's no you have, you know, detailing what sensory need you have, What support there is available. You're just diagnosed and there's nothing you know

So she gives, you know you can pay for therapy, you can have it NHS funded. I pay right now because my NHS won't do it. Um, you know, it's great

That's the meets we have, where we're meeting other artistics. And it's great because you don't have to mask you can actually be yourself around them. Um, I've made a WhatsApp group with everyone you know who attends a WP

So we all have, like, this friendship, and it's lovely because some of them, you know, say they don't speak to anyone. And it's nice to have that. You know, we have quite a few who have recently come out of, um, section in or being going back in, and they say it's nice to have someone to still talk to, You know, we've got the courses which they're running, Um, like we have the self care course the cooking course

Quite a lot of it's made and run and agreed through through the a PPS, which are me and Megan are ones, you know. It's artistic ones who we speak to Emma and we like she before she runs things. Before she agrees on things, she'll run it through us, make sure it's you know what we think we need, and it's great because they don't just, you know, we've been in many different services where when you're diagnosed with autism or a mental illness, they look down on you

They kind of treat you like you're still a kid. You know, you're not tr like an adult, you know, it's like they've got kid gloves on with you and you're It's just not great the way you trip, So but they these don't do that. You know, you trap like an adult like you can make your own choices and they help you gain that independence

And they do the P a work as well. I know Megan does that, and they've helped Megan quite a lot with that, and it's just really good. It's the only service I've had in Alton

Actually, that has helped Uh oh. That's really, really good to to hear. Um, when you were sharing some of your experience, you talked about, um, just being given a diagnosis and no support

What impact did that have on you? I actually wasn't aware that I was diagnosed, Um, when I was younger. Uh, you know, I've been in therapy since I was 11, but I was, like, for a long time. Um, it was just put down as anxiety because, girls, they're very difficult to diagnose, aren't we? But just often seen as anxious

And for many years, I was told I was just anxious. I was homeschooled from 13 because there wasn't enough support. Yeah, I didn't leave my house for three years, and I was finally diagnosed at 15

I had no idea. All I knew was, you know, I was speaking to these doctors. That's it

I was given a piece of paper. My parents were giving it. No one explained it to me

No one told me what, and then it wasn't until I found out I was pregnant when I was 16 that I was going through my notes and I said, I'm autistic. I said, What does that mean? And when I actually asked the people who diagnosed me, they told me to google it. I had no idea about anything

I had no idea about the fact that when I go out, you know, these panic attacks I was having about going out, they weren't just because I was different. It was because I'm not coping with the people. And it It wasn't until I met Emma that I was finally understanding

I'm not weird. I'm not different. You know, These are actual issues I'm having

Thank. Thanks, Nikita, for sharing. I'm gonna go over to Megan, and I know you've got some notes

So if you wanna share the notes or you want Nikita to help, um, whatever works for you, so can you share with me? Um, an experience. You've a positive experience. You've had, uh, access and support or health? Um, services in Halton

What? What made it positive. And what impact did that have on you? Um, well, I've got a social worker right now, and she she didn't used to be very good to begin with, but she she's not been too bad recently, cause she's been looking at supported living, cause I'm I'm not. I'm not very good at living on my own, Apparently, but she's been looking at supported living, So then I wouldn't have to live on my own

And I'd have, like, better support in the house And what you know, you know, she wasn't really good before. So what she told recently what makes her, um, better or or good. Now, I don't know, Emma, like, complained a while ago because she never used to answer me

And she just used to ignore all the text messages. And it's since then that she started to, like, actually speak to me and, like, help me around What I'm not doing very good with And can I ask you and you don't need to answer this. What are some of the challenges that you face like? So you said there are some things you're not very good with

Um So, for example, I'm terrible with organising my time also really, uh, struggle with getting overwhelmed and stuff like that. Uh what? What do you struggle with? Well, I I've got a DH D. So I'm I'm not very good at, Like keeping my house clean or paying the bills or like, stuff around the house

I'm not very good at that stuff. Mm. And you talk

You both of you have talked about Emma. So the support you're getting from Emma and, uh, remind me of the name of the organisation a WP the artist and well being, um, Project Project. OK, brilliant

So what makes that support really good? And what makes that kind of, um, service really good? They listen, you know, um, I'm not gonna name names, but we were with a different service in the past, and I had, you know, one of my autism traits is I'm very open. Some would say rude. Some would say, just open and honest

And, you know, when someone's struggling when there's difficulties, Yeah, I'll tell them. You know, we need this different. We need this, and we need this in place, but in them places, they wouldn't listen to you

And, you know, they'd see you just say you're in, uh, like a patient, a client where we don't listen to you. It's We do what we do, you deal with it. Whereas here you listen to they actually understand

You know Emma, She's a DH D. You know she's got autism kids. She's worked in schools, you know

She's therapist. She's great. She understands everyone she hires

She makes sure they're great. You know, John, a therapist she just hired is amazing. He's great

He's a natural, good therapist. Never seen good therapists that often, but he's great. Everyone

She works with Rachel, Chelsea, all of them. They are aware, and they cater to your needs. And they support you

They don't look down at you, you know, and everything she does, she does it. So, you know, in a way where she ensures it's gonna support. You know, even the newsletter she sends out she sends to us to make sure it's all done right where we can understand everything she does to the smallest part she makes sure is catered for us

Yeah. And what about you, Meghan? Can you What? What makes the support you're getting from a WAWP, right? It should be different from previous support. Well, I, I see Emma for my therapy, and I've never actually spoke to anyone before, but I'm not very good at it

But I don't know what it is about em, though She just listens to me. And she doesn't make me, like, say things if I don't wanna do it, like sometimes I just sit there and play games if I don't fancy talking. And I wanted to ask you both

What sort of challenges have you faced as autistic people? People living with autism? Um, in your life, that could have been denied. So what challenges have you faced of accessing the right support? Well, for one cams refuses to take you on it. When you're diagnosed with autism, you're not allowed to access that

Um, I was I could have gone to high school, you know, if I was diagnosed younger and there was actual support, but no, I was homeschooled. I missed out on quite a bit. Um, without the actual support, I was not able to attend college

Even though I did have a diagnosis. Then, you know, I was just We can't deal with this sent home. Um, I've never been able to have a job ever never been able to do that

Uh, there's quite a lot that you reject it for. You know, I've I have an eating dis Well, it's not been diagnosed, but we think it. I have an eating soda, which is a it

It's connected with, um, autism. The NHS don't fund that. I have never once had support for my eating, and I have struggled with that since I was a kid

I have begged. I have begged every doctor. No one will take me on

They don't deal with this. They say it's none of theirs, and there's, you know, there's no support. The only person who was supported is Emma has often support with that, but there is nothing for stuff like that anywhere

There's no support for Harper in the NHS now, before I come to you. Megan, can I ask you, Nikita? So, thinking about a good life, what would a good life look like to you? So, like all of those things you talked about, So what would you want from a really good life? It's like what? I try to make sure my son has now because he struggles. So I being aware of my needs younger, so for hi

You know, I make sure anything like I used to have panic attacks. Younger, very young. And I use that as looking at my son

Now, a lot of it is sensory envelopes. So being aware of your needs, being aware of your sensory issues from a young age would have helped me a tonne. Maybe I wouldn't be so in my house at all times

I believe, Um, actually having the support from early on, you know, that I've got now cos it's qu I'm really big on early help because, I, I know how good it is. And I've you know, I'm only getting it now. At 25 it's quite late on being able to attend school

That would have been great. Being able to have a job being able to go out, you know, on my own. I don't do that, you know, just not having the world speak still, the stigmas around autism, you know, everyone still sees it as this person sat in the car on the rocking or a genius

You know, it'd be nice to live in a world where you've understood really powerful. Thank you for sharing. Um, Megan wanted to come to you

So what have some of your challenges been in accessing health and social care support or any kind of support in Horton. I got kicked out of school when I was 13, cause III I wouldn't behave very well, but I didn't cope with all the people in it. I didn't know I had a DH D at the time

So I got sent to a referral unit for a year, didn't know what to do with me. And then through the year, I got sectioned a few times and they weren't very good with me in that either. To be honest and? And what would you want to change? Like what? What would a good life look like for you? Well, I didn't get diagnosed till I was 20 then I got me a DH D diagnosis just before I turned 23

So it might have been easier if I got diagnosed sooner because that they might give me more support in school and that I got kicked out of college as well, because I I didn't cope with that either. I wouldn't go through that while I was in there and Nikita kash you you You said, um and it you You used the phrase like it's much harder for women and, like, um, can you explain to me like you know what? What could be different? So, like you talked to, you've spoken about being overwhelmed, asking much harder for women to get a diagnosis. Um, really surprised that you said that you didn't know you were diagnosed and you read it on a piece of paper

Um, but what would you want to tell those kind of people that were supporting you? What could be different? I think I've tried to train as a teacher. Say I'd go back all the way to school. You don't legally need to be trained in autism, and I think that's disgusting

I think your diagnosis starts with your parents being aware. Your teachers being aware. You know, everyone who's looking after you need to be aware of the things to look out on and they're not

And you're still, you know, I'm still fighting it to this day with my son. You know, it's still a big fight. If people your teachers, your parents, you are just aware of little things to look out on

And then your professionals that you see your GPS. I've seen GPS. And you know I'm talking to them about my needs and they have no idea what I'm on about

No, you know not. I think they're aware of people in wheelchairs what they use a wheelchair for. You know they're aware of their needs

If you have a child in that's in the school in a wheelchair, you have an adult that's coming to your doctors in a wheelchair. You'll be able to spot them. You have to have ramps

You have to have things in place. There needs to be more reasonable adjustments for, you know, autistics because they don't. You know, you go to these places and they expect you to cope

You go to like the hospital. You're expected to just sit in the middle of a really busy place and deal with it. You know, if you're having a meltdown, you're expected to deal with it

The police Megan. She didn't mention the way they track Megan because even with her diagnosis was vile because there's not enough training provided for these professionals or they don't access it. The way these people treat Artistics because they're not aware of how they cope or what happens when they're overwhelmed is disgusting, and it ends up affecting them

It affects them so much afterwards. The can I ask you is reasonable adjustment. So what? How do people need to be mindful of the needs of autistic people? It's different in every setting

Um, how like when you go to a GP having a quiet room, you know, like you have ramps, you can have a quiet room. Um, you can ha make sure that if you have a diagnosis, you know, it doesn't come up on you. Um, Page unless you look, making sure, you know, like at schools now they have these pupil passports

Like Emma does a health passport. Now, with us that you can take in but having them at setting. Sorry, my puppy just woke up

Um, having them at these settings would be much better Having dimmed lighting, you know, you don't need these really bright lights even at hospitals having a quiet area in shopping centres. You know, having these quiet rooms, you know, especially are found in really busy centres or even having like, these quiet times that you can go. Um, when you see a professional, you know you have an appointment with them making sure they're aware of any needs and actually having say, a system where you can put a pupil pass a pupil, passport or a health passport on so every professional can see it

And I think B discipline. I can't say the word me can help me out. Disciplinary Thanks

Them meetings are really essential because I've had for me. I've had, like, four professionals involved in me and not one of them have communicated. So, you know, you're getting different support from everyone, and I think they need to happen more so Then everyone's on the same page and you actually get the proper support from everyone

Sounds like a really inaccessible world, like if you've got health and social care, you know, being in environments where people get overwhelmed or overloaded. No one communicating with each other. Oh, it sounds really challenging, but thank you for sharing some of the things that could be different

Um, Megan, like, what's your experience been? And did you say, like your experience of the police wasn't so positive? And what's your experience been around? Mental health support? Um, the mental health support. It's not been that good, to be honest, cause when I was in hospital, they just seem to discharge and they don't really. They don't offer much help when you get out

And then the police were never very good cause I don't like people touching me, and they normally just, like, grab me and like, he shouts at me. And then so now when I every time I had a police car go past the, like, the shit myself, I never cry. Oh, that's really hard

And have you had much of an opportunity either of you to talk to health and social care professionals, police and other people that have not necessarily met your needs afterwards? Now, um, that's something that Emma wants to do. She wants us to meet with, like, P, CSO S and, you know, speak to them. You know, Emma can provide, um, training to them

That's what she does, you know, she can provide it. So she was on about trying to do that. But I've actually met with the Oyo at my high school, and it was great to be able to tell them where they failed

Um cos sometimes they're not aware and it's sad because they're not provi. You know, there's not enough training out there or they're not aware of what they can get. Sometimes it's not even their fault cos they're just not aware of it

So it just takes telling them and someone providing it for them. But I've never, um, met with the old ones I get. It takes a while to get over the anger of them, feeling you to be able to communicate with them

And can I ask you like you talked about an please? If you don't feel comfortable? She talks about like your Samsung. We had to question that. We wanted to go around supporting other people with similar challenges

How easy, hard? Um, you know, what's your experience been of supporting somebody else with similar challenges? Well, I've got a sister, a brother who are diagnosed with autism, and my son has sensory needs. We're not sure about that. It's the most difficult thing you can ever experience

It really is. There is not enough support. It is difficult, you know, you have to fight to get them support

And it shouldn't be fighting just to get a child support. You know, uh, my brother, I nearly called him my son. He went to a autism school in witness, and it was incredible

But the fight we had to go through to get him there, it drains you. It is the most mentally and physically draining experience you can have. You know, when you're not, you've got to for a while until you're aware of all of their needs

You know, you're not provided with help for this. You have to figure this out yourself. You're like walking on eggshells to try and make sure they're OK

And there's not enough support for the parents, the family members afterwards, you know, you just expected to cope. You know, my brother and my sister, they were diagnosed, and that was it. We never seen anyone again

You know, sometimes if they needed speech language, you've seen them. But that's it. You know, they don't give you enough support advice

Stay there for if, you know, give the parents some support, some tips. You know anything, a check up, see how they're doing. Give them any sensory need

You know, sensory need support. There could be so much more they could do, but they don't. Megan, what about you? Um do you have you had experiences supporting family members, friends, other people in accessing, uh, services

One of my brothers is autistic, but I don't really speak to my family anymore, so I wouldn't really have a clue about that one. You support me, and I'm autistic. Hm

I pretty Well, I'm sure you're a great support. So I'm wondering how much, um, so have you come across this term co production? Do you do any co production or do you collaborate or work with the local council or any health? No. No, we have met with the MP

Um, that was fun. Yeah, uh, we gave him a good telling that the system's crap. And he he even said that we We're very good at speaking

And maybe we should go with him to the parliament to tell them all. Um, but no, it's very new. This so we wanna do stuff like that

You know, um, we wanna I wanna be able to broaden a WPL to Warrington as well, because there's nothing here in Warrington at all. Um, but it would be good to be able. It's not many people are aware of, you know, support

I'm trying to get the word out to people I know. But I know people who have kids who are autistic or who are artists themselves and have no idea that there's even this. And it's sad because you don't know unless you look and even looking, you wouldn't know where to look

Megan, I was just wondering, have you got anything else you wanted to share with me? Like around your experiences And like, what? Uh, so any positive negative or anything that you would wanna tell people that might be working with people with autism or a learning disability, like, Yeah, um, uh, I'm not too sure to be honest. OK, there's no worries. And I know you've got, like, you've, uh, answered some of the questions

So, like, if you could send them to me, that would be great as well. Um, can I ask Nikita like anything else you would like to share with me about why this work is important? Because you're essentially affecting the, you know, either impacting or affecting the mental health they're living, you know, providing them with support is gonna affect their living skills. Their ability to attend rational support, gain friendships, socialise

Eat properly. You know, that's one thing. Obviously I struggle with and I'm going to a cooking cause now I never would have pictured doing that

You know, it's essentially affecting their entire life, providing them with the correct support, speaking to them in the correct manner, you know, stuff like when you're speaking to them often. I had a social worker quite that long ago to do an assessment, and they give me too much information. So Rachel, who works with a WP just, you know, gave me a little bullet list bullet point list of it cos that's how you need it, you know, often just dumb

I hate saying it but, like dumbing it down, making it smaller blocks of information, not loads at once, are even giving them information in bullet points. You know, making not loads of you don't need to, like go into big topics of it. Giving important facts often is easier

So need that entire conversation. It's finding out what that one individual needs and not referring them to the incorrect support like stick with a WP. If it's an adult chaps, if it's a child, OK, tell me about being referred to the incorrect support

I'm not gonna see this on it. No. Um uh I mean, the consent form asks you how you want it to be shown so we can take bits out as well

It's more that as long as chaps don't see me say this right, OK, maybe don't say chaps maybe say services are very generic. Yeah, OK, take that part out. Um, referring them to the incorrect services makes them lose that trust in them

You know, it takes a while to gain trust in someone when you've been failed so much, and when you then go to a service, that's not the correct one. And there's impro professional boundaries, you know, they're not providing the correct support. They are essentially just failing you again

You lose that trust, and you're not gonna regain. It's very difficult to regain, especially as an artistic person who really struggles, socialising and really, um, trusting people having the correct support is essential to help build that. And whereas if you go to the wrong place, you just ever destroying that and that impact that you earlier talked about, Obviously, if you're going to the wrong place, that impact is greater, isn't it? Yeah, It is, It's much, but yeah, I've had many people who have gone to a certain service

It you've seen the impact on their mental health. You know, they've been really struggling really down, um, staying in more. You know, that's when we call it

And then you see them now and, you know, they're socialising more their mental health, you know, they still struggle. That's not gonna change overnight. But you can see the improvement already, And this has only been here for a few months

And do you? Uh, So if we were so this is gonna be shared, and I we'll definitely take that bit out. But in terms of, like, what messages would you want? People that have N not much experience or are doing things that don't meet your needs to hear. So what? Things need to change? What do we want to see? Different

Get training for one. You know, even if you don't do excessive training, you know they do some at colleges, distant learning courses. I've done them

They're quite easy. Just educate yourselves. You know, be aware of what they need

Be aware of the sensory needs. Be aware of the any adjustments. They could need to speak to them about what they need rather than assume, you know, and actually listen and put in things rather than just say you will and never do it and just don't treat them like they

I know we're classed as a vulnerable because we have a, you know, additional needs, but they don't need to be treated differently. They need reasonable adjustments. Yes, but you don't need to treat them like that lower than you are

They'll speak to them with the same where you would an adult, you know, give them the same respect. Uh, what about you, Megan? What? What things do you think? Need to change, and I don't I. I don't know, but I'm not very good at this

Some I think you're doing amazing just to say, um you don't need the answers now. Like, if you think of things afterwards, you can send them to me. We can meet again

Um, but you already did say a few things. Like, say, like you said that, um, getting the right support at the right time, people understanding that you don't like being touched. Um, So maybe other people don't like being touched

You've already said so many positive things. Um, but no, no pressure. Like you can come back to me

And as you can hear, my puppy just woke up as well. So sorry about that. Um, I just wanted to, uh, to I've got one more question

So, like we I, I touch. So have you heard of the like, co production? Have you been doing any co production? N? Don't think so. No

OK, anything else that you wanted to share with me before, Um, you get to ask me some questions? No. OK, no, uh, So I'm gonna send you a consent form, Um, that I'd like you both to fill out, and we will definitely take that bit out. I'll I will move that bit around the name of that service

Don't worry about that. Um, we've got a couple of workshops coming up where we'll invite you to help us think about a lot of different people's stories. Thank you for your time

Um, any questions if you have You got any questions for me? Um, when will it become that you're gonna start, you know, training every staff member. So we I I hope, um, as someone that has similar experiences to both of you that we use these stories to get the systems. That's health, social care, education

To understand that there there is a need to be doing things differently. So we are gonna have some workshops, and we're gonna put in those workshops, identify some key areas that we might wanna, um, sort of focus on. And then we're gonna have another workshop called a conversation of change, and it's a bit of a wonky word, but what it means is we can present This is what we need to do differently

One of the things I've already heard from both of you is train people make sure people have lots of training so they can meet the needs of autistic people and their families. So that's something we definitely and Halton are developing a charter around co production. This will feed into, um, some of our recommendations or some of our asks

So, um yeah, and you'll be involved in that as well. So is that Have I answered your question? Because sometimes I don't answer big questions. Sorry

I was like my cat in any other questions. for me. Megan, if you got anything that you wanted to ask me Um, no, I don't think so

OK, so thank you. Uh, gorgeous. What's the puppy's name? Sorry she needs because that's Coco

Coco. I have a guinea pig called Coco one called Chanel. Um, three dogs and loads of fish

I've got loads of pets. Um, lovely to meet Coco. So I haven't got any more questions for you

So, um, thank you so much for your time. And I'll drop you an email this afternoon just to say thank you and with the consent. And I've noted down just to remove that that name of that organisation

So I don't want you to worry. I will definitely remove that, OK? I mean, personally, I won't be bothered, but I think they might be OK. I understand that

Brilliant. Thank you very much. Both and I'll, I'll speak to you

I will email you this afternoon. All right. Thank you

Um, Nikita, do you want to send me the questions that you've responded to? Because we can add those in the list of things. I mean, I didn't answer them like, you know, in actual sentences, I did it in bullet points, but you can have it. Send them to me

That'd be great. OK, I think you can actually share meeting notes. So do you want me to just Yeah

There you go. OK, thanks. And so other than that, really thank you so much for your time

I hope you get your therapy appointment. And Megan, thank you for all of your your support. And thanks, Nikita as well

And see you soon. Bye bye, everyone. Take care

Bye bye..