Nonnie talks about their experiences of care and support in Norfolk. They have had many trips to A&E which resulted in being contact by the HIT team (High Intensity Team for A&E) The result of this led Nonnie to creative writing - which is now an invaluable outlet for them.

too fast. Depressed? Yeah. Yeah, I think so. You have to

It's an inbuilt consent function. I'm just so you know, on the recording, I've just pinned you to my screen so my voice will be heard, But it won't It won't do that jumpy about things from face to face so high I now need You just want to introduce yourself. Hi

I'm Nani Pippen. And yeah, a 40 year old dad of five. There you go

Yeah. Number and non binary, obviously. Yeah

Brilliant. And just want to tell me a little bit about your experience of the care and support system. And you know how you've been part of that? Firstly, to say, the NHS are brilliant, and what they do is absolutely perfect

It's not not in any way disparaging on them, but yeah, I felt I found being a 13 year old boy was quite challenging and emotional and lots of anxiety, which then later went at 19. I think that became quite depression related. So I got picked up by NHS GPS to start with between the ages of 19 and 30

I was mainly going to the GP. Um, there was some counselling involved. And that was all focused around family life and upbringing

And then, I think later life. So I got a diagnosis in 2015 for O. C

D. Obsessive compulsive disorder related to the cognitive sites. So to do with obsessive thoughts, uh, obsessive ruminations, tragic, tragic stuff that was going around my mind that was really making me unhappy

And then 2017, I got picked up with definite, definite Asperger's syndrome, which is now part of autistic spectrum disorder or condition. I'm not sure it's hard to know sometimes, isn't it? What? What difference did that make to you, Nani having that sort of insight or diagnosis or found it interesting that there was that two year gap? Because the discussion really started at that meeting with the consultant psychiatrist in 2015 when I just looked him in the face and when I really can't understand what people are thinking, I can't read their faces, and that was that was a light bulb moment. Really, something is different about the way that I think, Yeah, I still got tied up with the Norfolk Suffolk Foundation Trust Mental Health Community Team and also the residential team as well

For quite a time, Yeah, in and out of hospitals. Um, summer. Any hospitals? Some mental health hospitals, Like scary times

Quite scary experiences of what I came across. Things like being attacked and being treated like I was, you know, a very ill patient at times and being treated like I was a bit of a time waster at times. So, yeah, that was quite hard when they said, Just don't complicate things

Don't explain it. Just so you've got a mental health condition and we refer you to the uncle Mental health team and they'll send you home. So So, how did you end up being, um, in hospital for the first time? And I will just say before going further if there's anything you don't want to? Yeah

So careful how I phrase it, I was I was not really making attempts on my life. I was more doing a cry for help. So microfiber helps were on the line

So I would sit on the platform of a train station or I'd lie in the road. Not really definitely making any attempts, just being really risky and trying to get the attention of the NHS. Um, in 2021 22 that became a lot more problematic because that was to do with phone calls to the 999 numbers

Um, I was following a very autistic pattern of what was in my safety plan, which was to call my appointed worker, who would who would not answer it, go to voicemail to call the duty team. Who would tell me to not to not bother them? That was that wasn't that wasn't having a crisis to call the crisis team. I follow this pattern quite rigidly and then to call the 111 service who would do the 999 call usually

But if they were too busy, I would make the nine. And I call myself so spending a lot of time with paramedics and ambulance drivers over fears of having heart attacks of having cancer, brain tumours, Everything was in my head about what was making me so ill. Yeah, yeah

And so, yeah, I mean, that that just makes so much sense in many ways. And so did you end up? Did you? So you're you're in and out of hospital because of that fear of visits in one week. I think I attended hospital seven times

That was that was the worst. And then I got referred to a high intense to use the team. Who said I was above their level? Is that as in a and A as in any records, Every instance that you're there If you're there a lot of times, then they refer it

Um, lovely chapter I spoke to said he was one of eight people in the county and the county of East Anglia that could actually take on people. And and at the point when I was still calling the police ambulance, um, Coast Guard crumbs. I know I know them all personally

People like Christian and Paul and others that I've got to know personally Richard, who immediately recognised me. Even though we're in a completely foreign location, I think we're just We just met in the woods when he sent about six or seven police cars and an ambulance well, and what was so what was the role of that person, then from that high intensity team he was managing to try and avoid this situation happening? The turning point happened when I got to see someone from the crisis team who suggested maybe there was a better outlet for all this energy and thoughts. And he talked about something called The Endless Poem and at the same time, another counsellor mentioned to me the seven minute splurge

What those concepts are is to put thoughts down so they don't occupy thought space at all. They just occupy paper. Um, that has grown

So I've now published a poem and I published a book. Wow, I've got another book which documents or all of this that I've described you happening more like a journalistic memoirs type, uh, book, which I haven't published yet. That's fascinating

I might get it because of all this experience. Yes, yeah, I might get you to share the poem a bit later on. If you don't

If you're happy to do that, it doesn't make a lot of sense to neuro Typical. I'm sure neuro diversity will make a lot of sense. Yeah, but it's I just think it's fascinating

And as an aside, this is something that we're kind of exploring and experimenting with. Curator change in terms of how do we get people to express what's going on for them and their experiences and in ways that make no sense. So it's absolutely perfect to have something like poetry or songwriting or even fantasy novel writing

Yeah, it does have a real outlet for those thoughts you mentioned when we were chatting earlier that you've had you've spent 10 years under the care of mental health services. Um, yeah. What? What was that experience like for you to any, um, lots and lots of sin posting

So even though you might get to know someone really well beyond personal first name terms with them, they would immediately lose your case and you'd be referred on to someone else. Um, I also move GPS surgeries five times, which is hugely problematic because even though there's a primary care record, uh, the mental health record is separate and that really problematic when it comes to medication. So medication is prescribed by your mental health team, and so they have the final say whether or not the doctors can give it to you

And the GPS similarly had a problem that they couldn't continue providing medication without an existing existing certificate, which, as we're saying when it's going back 10 years. Then, even though the medication is identical, nothing has changed. They still want to do blood tests

At one point that I was requested to do for annual blood tests. Yeah, so I went Hang on a second. Your math is wrong at the fourth one

Yes. Yeah, yeah, yeah, Absolutely. Um, And in that in that time with mental health services, did you spend any time in the hospital? Uh, absolutely

Inside of a mental health hospital four times now for different periods of time. The most exciting one they actually sent me to. Well, I've been sent to suffer twice, which is the neighbouring county

And so I've been to private and public sector, and I've also been put in a section 136 suite, which is a complicated arrangement where they lock you in a room for 24 48 hours or so. Work out what to do, uh, for safety. And what what impact did that have on you? Uh, I find that the most calming environment, the lighting is perfect

The noise is perfect. Um, the only difficulty is leaving. So you're going back and you're going back for a very clinical, Um, a very sort of try to think of the word

Now there's a lot more happening. Maybe a lot more things when you're thrown back into the real world. When you've been in an institutionalised situation, your body takes a little bit of time to change and adapt

It's sort of like a mini rebellion, and it's interesting because the way you've described that experience of seclusion as it were there of being just in a in a room with no stimuli actually sounds really appealing to me. You and you can only get there if you call 99, let's say Yeah, but actually, the flip side of that is you do hear people's horror stories of being forced into an environment like that when they don't want to be. But that's not how it felt to you

Doesn't feel like that. The other experience I've had now twice is being locked in a police holding cell, so it depends on what you say. What trigger word to use

I won't tell you because you don't want to know how damaging it is to have trigger words, but certain trigger words trigger the police and certain trigger words trigger the ambulance and the police are not allowed to take you to hospital. All they have one they have on occasion actually done that. Um, the police are only allowed to hold you for a certain amount of time whilst they do their investigation

The holding cell is a very common environment again. Low light, low stimuli. There's often activities that they give you two

So they've given me word searches and colouring and pens and paper. I said not to give me pens and paper because of what I'd write. I wrote them the Miranda rights out for them

Brilliant. And so when you came out of that that sell in those situations, you were coming in a lot easier because that's like a repatriation type thing that they'll talk you through what's going to happen. They'll get you home

They'll make sure that you're safe and that you're not gonna not gonna cause any harm to yourself or others. I suppose What's coming to my mind now, though, given the other things that we've talked about in terms of, I think again earlier you said, you've you've got ties with mental health services. You have to tell them quite you have to self discharge

You have to say that matter of factly. I do not want to continue this arrangement. I feel I can

I'm self sufficient. I can manage my own environment. Yeah, it is whether it's whether that those experience that you've had and the support you had for mental health services have helped you on your journey or whether you feel that they have hindered you at all and whether other support would have been more helpful if that

If that makes sense, I feel I could have used that 10 years in training and development, and I would have been able to develop some of the skills. I'm still trying to get the training for now, too. Things like how to how to come across well in an interview situation

Professional context, how to socialise If I have been doing that 10 years ago, rather than wasting police and ambulance Stein, um, then, yes, I would have been in a different place now, but you didn't have that diagnosis of Asperger's know what the conversation in 2015 literally was. I can't read people's faces and he said possible Asper gis syndrome Highly likely, right? Right. But the route to support you was still very much through mental health services rather than I was trapped

At that point, I had to keep attending once a week, twice a week, making lots of car journeys. And then it became train and bus journeys. Yeah, and and And how have you How have you managed your kind of family responsibilities? I don't know

I really don't know the answer that I'm a natural mum. So I just love kids and I love mothering them. So yeah, the way that I approached it was always be as hands on as is absolutely possible

I read the pregnancy books and I went, This is absolutely humorous. It says, Men, here's your one page and I go, Well, I won't read the men's page. Then I'll read the book

And then I read some more books and then I go into hospital and I say, That's interesting. Is that the Is that the doctor? Is that the Are you trying to find out if the baby is Catholic and things like that? And at one point, I was an attorney when I was trapped in the mental health situation and he turned to me. And what kind of doctor are you? So I like that

Just observe. I know what the options are. I know what you're trying to find out

You're trying to look, find a baseline and then see if there's any differences. Change of trend of things. Yeah

Yeah. And how old are your Children? My oldest is now 13, and my baby was born on the 24th of September. Wow

So you've got a real spectrum of Children? Yes. Spectrum would be a good description of the Children. Yeah, I've got a builder

I've got a historical philosopher. I've got musician. Yes, Um, definite traits

But I'm not allowed to diagnose the Children and say what they've got. That's up to whoever is looking after them. But they've all been they've all left high intensity now, and they're all very much happy in the situation

Also going to talk about them, so it's irrelevant. But you want me to cut this out? What happens with the kids is the kids, isn't it? It's fun to talk about his parents and say but but it's okay. I get the support because I've had the experience that I know

Yeah, I know what can go wrong. So I just tell them Yes, I know you want to say that, and I know you feel like that, but it would be really helpful if you didn't. Yeah, So I got them, I got them

I got a lot of sets of ear defenders. It defenders his best for kids because it's like a toy that they can put on whenever they're feeling stressed. And I also built my son again, but we're not talking about a little play down in the in the living room

We're talking about a shed like carpeted, put lighting in electricity, Internet. And he lived in there for a short time. Yeah, kids, kids

But it's about adults, isn't it? It's about the kids Services is potentially now going to work. If the if we deal with adults properly, that's that's Yeah, that's really interesting, because you and who you are today is very much been shaped by your experience of the system, I guess. Yes, that's right

Yeah, And if that had been different, then you know your life journey might have been different. In some ways, it might not, but it might have. You might still have as many kids are still

Yeah, they might. They might not have had such a turbulent journey of their own because having to witness mine. Yeah

Yeah, and that's that's Yeah, that's so important. What do you think? What do you think would make a difference? And then we met the other day and we were talking about this ethical framework, whatever we mean, we mean by that. But what what thoughts do you have about how services How the council, how health could work in ways that were more ethical, if that makes sense to you, Um, I have learned you have to treat everyone as a person regardless of what you call mental mental capacity, because mental capacity is very subjective to depend on which doctor you speak to

So everyone should be given just the right to communicate in a way that's easy for them. Uh, what they're both their needs are. And I guess, to an extent, what they're barriers are understanding someone's needs and barriers

You can you can give them the right support. Yeah, and it's clear, uh, correct me if I'm wrong, but what I'm what I'm hearing there is. There have been times in spite of the difficulties that you faced, where people have clearly responded to you in a way that's been really helpful

What is it about those people? Are those interactions that's felt different or made the biggest difference for you? Um, the ability to put you at ease. So it's very easy for me to, um you get to a point with one of my workers, where there's frustration which builds to an aggression. If I meet someone like I met a lovely gentleman called Blessing in any, and his approach was just to smile and laugh all the time

And that put me at ease because I could understand what he was trying to communicate was not the words. It was emotions, and I could feed off those emotions and learn those behaviours. Yeah, my son describes it as emulating the behaviour of the person that you're with

So he says, when I'm put with a toddler, I will play with the Lego and I will break things when I put with the police officer. I'll explain to him the way the law works and how to do and how to do his job, which is the worst part of it for me, for me that I will. I would almost try and copy the behaviours of the person I'm with in order to fit in with society

And I just have to be aware of masking and just not masking in a situation where someone is trying to find the root of the pain and needs information. MM. And so So

The other side of that, then, is what is it that's unhelpful about the way people respond to you or interact to you? So I definitely think I share my Children's demand avoidance. So if I am asked too many questions and incorrectly phrased a word question or asked to complete a form which is clearly illogical, then I will. I will rebel

And that's not the outcome that anyone wants in any situation. Because when I rebel, I will fill out the God nine or the gods seven form to look like I'm in the worst situation I possibly can be in. And yet, when I present in the psyche psychological or psychiatric interview, I'll come across as completely capable

Yeah, I can get myself into hospital and get discharged within three days a week because I can change behaviour on a whim. Mm, yeah. And that's to do with the people and the environment and what's been asked of you and your ability with the NHS on their multiple option forms and said, Why not simplify it? Why not simplify both the wording and the number of options on what was their response to that? I believe they've taken that feedback on board

They interview a lot of people. They do a lot of online, uh, evidence gathering. And yeah, the outcome is that I have a better understanding of the way the NHS is trying to do their job

And I understand my part in that. And so again, I know from previous conversation that we've had that you're involved in service change or, you know, sit on different groups or boards or whatever for for, for for just a living, really. I just do that just because I have experienced things that I don't want other people to experience

And how important do you think it is that places like Norfolk have people like you directly involved in the work that they're doing. I want to really take a close look at myself and say I'm not the perfect person to be on these boards. I'm just the most vocal

I think there are very, very clued in people that are just not able to communicate the way that I do because I write poetry because I write songs because I wrote books. Um, I have a tool that I have to. I've had to learn that I've developed a high level so I can communicate

So I largely like to listen to other people. That's how I get my information. I sit on a train or a bus and someone comes along and says, My child just won't settle And I said, Well, have you tried this? Have you tried, uh, sensory? I don't know what you call it, but either sensory blocking or sensory change in order to make the environment more settled

So I've been I've mainly taught people how to manage their Children through personal experience of how I manage myself such invaluable experience, and it's great. I mean the majority of people, if they sit on a bus or a train and there's a child screaming. The place down will try and avoid the situation, whereas I will put myself out there, meet a complete stranger and build a bridge

Such an amazing skill. And so, yes, I'm not. I'm not the most intelligent person in the room, and I'm certainly not the most eloquent

All I have is the skills I've learned, and I I sense in that that you're doing yourself a disservice. You know how intelligent I know how I am. But look at the facts, cat

I don't have a job. I don't have a steady source of income. I am

I have sabotaged myself on multiple occasions. And so how is that? How is that living? That's a strange way to approach life, but a perfectly clear, logical, autistic way of doing it. Yeah, again, when we talk about this thing, we call co production, which is essentially what what we're trying to do

But we don't often use the word because it's a bit wonky and people don't often understand it. We are essentially talking about how we value what people contribute, and that value goes way beyond the financial exchange or the economic exchange into a realm of how we really care and support and nurture each other in society. And that's where coproduction evolved from is how do we get past this point of only being able to value what we pay for when actually, there are skills and exchanges that happen in all our lives every single day that are of immense value to our society

But we do live in a financial society, and I have had to learn those systems and break a lot of the rules because I don't understand the systems so things. Things that I have used my talents for are dealing with companies that do not understand, um, the barriers that we face and teaching them the barriers and also putting in the complaint about the people that have made the mistake to retrain them. And the complaints are always financially paid

So that is another way that I've made a living by basically explaining to banks or organisations that are financial organisations, how they need to approach the things that they're doing. Dad, Yeah, is that something you need to deal with? That's just one of the things I have to deal with. It's not It's not something that I want to deal with

It shouldn't be now. It should be later. She's checking that I'm going to be at the appointment later

I'm just gonna say, Is there anything else? None of that you would like to re emphasise what I've learned, which is that we need to look at people's needs and the barriers that they face. That's the That's ultimately where you're going to get co production when you have an ability to help someone, to communicate their needs and their barriers, and then to be able to use that information to support them. Thank you

I'll stop the I'll stop now because we're at a time..

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