Case Studies of WAARC Inclusive events in Practice co-created with Disabled People's Organisations

Transcripts of interviews
Professor Charlotte Lawthom
Professor Rohit Shankar

Case study 2 - WAARC Launch event - Sheffield Voices Easy Read write up of our WAARC launch event in December 2024 (PDF, 2.4MB)  - an account of our face-to-face and online launch events.

Case study 3 - Dreaming up a Disability Inclusive Workplace webinars and workshops - running from September 2024 to March 2026 - which puts into practice a set of online access principles and good practices.

Case study 4 - Humanising the System  - an event co-created with researchers with Speakup Self-advocacy, Sheffield Voices and Sheffield City Council - which aimed to centre the perspectives of researchers with learning disabilities and foreground the importance of accessible easy read words and creative sessions that used forum theatre.  Captured in this blog by Love Sheffield's Brian Mosley.

Case study 5 - Reclaiming the Human in Healthcare Manifesto presentation (PDF, 
9.19 MB) by Nikita Hayden, Barod and Sunderland People First at the 2025 Seattle Club Conference in December 2025: an example of a collaborative conference presentation.

Contributors: 

• Charlotte Lawthom 

• Sunderland People First 

• Dan Goodley, Nikita Hayden (University of Sheffield)

Introductions and ‘ground rules’

Nikita Hayden: Andrew's getting his name ready for the welcome, the introduction, that'd be great. Charlotte, do you want to just start by introducing yourself?

Charlotte Lawthom: Yep. Hi everyone, my name's Charlotte Lotham. I'm a neurologist, which is a doctor of the nervous system, so mostly the brain.

And I am interested in epilepsy, and I've really enjoyed doing research and working, including with Sunderland People First on Humanising Healthcare. I've got my mug here. And did you all know, maybe you all did, and that's why you picked this date, but it is Learning Disabilities Week this week, so happy Learning Disabilities Week from me!

Sunderland People First: Thank you, Charlotte

Nikita Hayden: Fantastic. I don't know if we want to start, maybe with Phil and his sister, if you want to start by introducing yourself, and we'll just go through everybody at Sunderland People first, so we all know who's in the room, that would be great.

Sunderland People First: My name’s Philip and I’m from Sunderland People First.

Charlotte Lawthom: Hi, Philip! 

Sunderland People First: My name's Karen Hughes, I'm his sister, and I help him.

Charlotte Lawthom: Hi! It's really nice to meet you. Do you like to be called Philip or Phil?

Sunderland People First: He doesn't mind. Don’t mind. 

Charlotte Lawthom: Easy breezy. Okay, great.

Sunderland People First: As long as you don't call him too late for his tea! 

Sunderland People First (Matthew): Hello Charlotte, I'm Matthew. I also work here. Nice to meet you.

Charlotte Lawthom: Hi, Matthew, lovely… lovely to see you, and happy birthday, of which more later.

Sunderland People First: (Nathan) Thank you, thank you. Hi, I'm Nathan, I'm one of the autism advocates here at Sunderland People First. 

Sunderland People First: (name - can’t catch on recording) One of the advocates and a director.

Charlotte Lawthom: Hi!

Sunderland People First: Hi, I’m Adam, 

Charlotte Lawthom: Hi, Adam.

Sunderland People First: Hello, my name is Andrew Cowell.

Charlotte Lawthom: Hi, Andrew!

Sunderland People First: Hello, my name is Andrew with CAM.

Charlotte Lawthom: Hiya!

Sunderland People First: I'm Briony, I'm another one of the autism self-advocates at Sunderland People First.

Charlotte Lawthom: Hi Briony

Sunderland People First: I’m Erin,

Charlotte Lawthom: Hi, Erin, lovely to see you.

Sunderland People First: most copious person I have. Hi, I'm Tommy, I'm holding up, I'm sending the paper first, and I'm gonna see if I forget.

Charlotte Lawthom: Hi, Toni Ann, it's lovely to see you, and happy birthday!

Sunderland People First: Thank you.

Nikita Hayden: Is there anyone else off-camera that wants to just say hi? And I think there's somebody in the back, the person in the white cap, if they could say their name as well, that'd be really great.

Sunderland People First: Hi, I'm Jonathan, I'm Andrew’s Support.

Charlotte Lawthom: Yes, I love that! You’ve appeared from the depths!

Sunderland People First: (Lisa) Hi, Charlotte, you know who I am.

Sunderland People First: Hi, hello.

Charlotte Lawthom: Hello, it's lovely to see you. Yeah, I do, I do, absolutely, Lisa, nice to see you.

Sunderland People First: I'd say the way they both came at the same time.

Nikita Hayden: Wonderful. So, we'll… I guess we'll be able to hand it over to Matthew and all of you to do the intro and to ask your questions to Charlotte.

Nikita Hayden: We've got some time together, and we can cut and paste bits of the video, so if you feel like you know, you fumble on a question, or you want to try answering a question in a different way, we will have some time to do… to do more than one recording of bits of it. That's okay, if you feel like you want to do that, or you need to do that.

Nikita Hayden: So, Matthew, if you feel like you want to have a second go at doing an intro, that's okay. And we can choose the better of the two, so don't feel like it's one and done. If you feel like you want to have another go, you just let us know, and we can take it from the top.

Nikita Hayden: But what I will suggest is that try and finish your question, or try to finish your answer, because it might be better than you think, and it might still be good to use. So, do finish what you start, and then if you want to redo it, we can redo it, okay?

Nikita Hayden: Does that sound alright to everyone?

Sunderland People First: Yep. Yeah.

Nikita Hayden: So it's nice, low pressure recording here. What I'm gonna do, I'm gonna just hand over, I think, straight to Matthew. I'm gonna then mute myself so I shouldn't turn up too much on the recording.

Nikita Hayden: And, yeah, I'm really looking forward to hearing all your questions and seeing how Charlotte handles them. We'll see how she does.

Nikita Hayden: Okay, so just start whenever you're ready, okay?

Sunderland People First: Okay?

Sunderland People First: So, yeah, I'm stood here because it's easy for me to do my intro instead of just sitting in the back - that's a bit awkward, so… Right, so hello and welcome, Dr. Charlotte, to Sunderland People First as the Assembly.

Charlotte Lawthom: Thank you!

Sunderland People First: So, today we have a set of 6 questions that we want you to answer, and we want to get you to know more, not just as a doctor, but also as a person. 

Charlotte Lawthom: Great.

Sunderland People First: you know, we're all about humanizing healthcare, we've been doing this for a long time, but it's only really all going to work out if it goes both ways. So, if we want people to be more than just patients, we also want to have the same for professionals and people who are more than just their job, you know?

Charlotte Lawthom: yes,

Sunderland People First: Now, that said, some of the questions that we're going to be asking today will also be about the kind of things we'll never normally be comfortable asking a doctor at an appointment, and things like that.

Sunderland People First: So today's the day where we can start breaking down those barriers between us being patients and doctors, and just be more human. So, anyway, I've gone on long enough now, so I'll pass you over on to Bryony, who's gonna lay out the groundwork.

Charlotte Lawthom: Thank you.

Sunderland People First: So, our ground rules before we really get our assembly started.

Sunderland People First: No subject is out of bounds. No topic is off-limits.

Sunderland People First: And anything might happen! 

Sunderland People First: Yeah!

Charlotte Lawthom: Sounds… sounds terrifying, but brilliant.

Sunderland People First: Sorry, we've just… do you want to… do you want to introduce Andrew? Okay, so… Our first question is going to be from Andrew. So, Andrew, what would you like to ask?

Question 1 (Andrew) - If you were not a doctor - what would you be? 

Sunderland People First: If you were not a doctor, what would you be?

Charlotte Lawthom: Wow.

Charlotte Lawthom: Okay, thanks, Andrew. So, there were no limits. I would have loved to be a singer.

Charlotte Lawthom: And one time, we were away, and somebody mistook me for an opera singer, and that was a highlight of my life. But if I wasn't good enough to do that, I've always wanted to run a little restaurant somewhere hot by a beach.

Charlotte Lawthom: So, that's my… that would be a little dream plan if I… if I win the lottery, might do that.

Sunderland People First: (name) I'm gonna run a karaoke restaurant somewhere.

Charlotte Lawthom: Oh!

Sunderland People First: And you could do more. And you could do more. You could be the only person who can do the karaoke.

Charlotte Lawthom: You absolutely smashed it! Why didn't I think of this? That is exactly what I need to be doing - Perfect idea! 

Question 2 - What is your favorite film and actor, and why?

Sunderland People First: Our second question is from Toni Ann.

Sunderland People First: Hiya.

Charlotte Lawthom: Hi, Toni Ann

Sunderland People First: What is your favorite film and actor, and why?

Charlotte Lawthom: Okay, so… Have you seen the film The Silence of the Lambs?

Sunderland People First: Yes, yes.

Charlotte Lawthom: If anybody hasn't seen it, it's brilliant, but it's very, very frightening. And, it really keeps you on the edge of your seat.

Charlotte Lawthom: And there's not much in the way of, blood, or it's not like a traditional horror, but it's really scary. And I think…that I'm gonna choose the actor in that, because he's also Welsh, and, he's… so I'm a bit biased. So, Anthony Hopkins, who plays Hannibal Lecter, is probably my favourite male actor, I think.

Charlotte Lawthom: And I also like… have any of you seen Westworld?

Charlotte Lawthom: So Westworld is a show where you can't tell who's human and who's a robot.

Charlotte Lawthom: Yeah, have you seen it? He's in that as well, and it's mind-blowing. I love it. Brilliant.

Sunderland People First: on a TV show as well.

Nikita Hayden: Fun fact, did you know that Anthony Hopkins is autistic?

Charlotte Lawthom: I did know that!

Nikita Hayden: He's in good company.

Charlotte Lawthom: He is. He is in good company.

Sunderland People First: And he wrote his own musical piece as well.

like classical music, please, as well. Oh, wow. Yeah.

Nikita Hayden: I didn't know that, that's really cool.

Charlotte Lawthom: I didn't know that, and apparently he was, when he went to school, they didn't really recognise or…help develop him. So, you probably know this story, Nikita, but basically, the school spent a lot of time trying to get rid of him, and it was his mother who encouraged him and said, you can be whatever you want to be.

Charlotte Lawthom: And we all just need one person, don't we? One cheerleader. And you've got a whole group of them there, but if you've got one person that supports you and tells you you're good enough, I think that's really important.

Question 3 - I would like to know your perspective on when women are dismissed as just having anxiety and panic attacks.

Sunderland People First: Third question is from Briony

Sunderland People First: (Briony) Okay, so some context for mine. Last year, a video of some of my seizure-like activity was sent off to a doctor, and they decided it was just a panic attack.

Sunderland People First: (Briony) And I would like to know your perspective on when women are dismissed as just having anxiety and panic attacks.

Charlotte Lawthom: Yeah, and I think…

Charlotte Lawthom: I think women… There's lots of evidence that women tend to get ignored, or told that they're making a fuss, and that's not new, that's been going on for years, for hundreds of years, thousands of years, so… and…interestingly, lots of research happens in men and not in women. So, women present to medical care, and they're 10 times more likely to be ignored than men, which is clearly awful.

Charlotte Lawthom: One of the problems with videos is you just use the word context. You often need to know the context around it.

Charlotte Lawthom: Because sometimes I might see a video, and I might think, well, is that the start of something, the middle of something, or the end of something? And also, I might say, is every event like that?

Charlotte Lawthom: Because if not, I need to see a video of everything so that I know all of the things that are happening.

Charlotte Lawthom: In general, It's not… unusual for people to misdiagnose certain types of seizures as panic.

Charlotte Lawthom: So, I guess, for you, Bryony, I just want to remind everybody that in England, because of patient choice, you are absolutely allowed to say, I'd like to see another doctor, I want another opinion. And that can feel really uncomfortable, but you don't have to say it to their face.

Sunderland People First: (laughter) You can…

Charlotte Lawthom: is fine! So you can just, you know, get somebody to help you write in. Sometimes you can do it just by ringing in, and you can say, look, I don't agree with you, I want an opinion. I also think that you've obviously received that information back. I don't know if it was just a letter, or just a message, but…feels as though you really want an opportunity to talk about that with someone. Yeah.

Charlotte Lawthom: And I think that because… the NHS is so…poorly funded, and there's a lot of demand, and we're not keeping up with it. We are increasingly making decisions at a distance, but we do have to remember that there are people at the other end of it.

Charlotte Lawthom: And so, quite often, it's really important to them, that bit of video is something that's happening to them in their lives, and they need to know more about it.

Charlotte Lawthom: So, as a minimum, I would say you need a face-to-face appointment, or video call appointment as a minimum.

Charlotte Lawthom: But if you want another opinion, you are, well, you are… that's your right, Bryony.

Sunderland People First: (Bryony) Thank you.

Charlotte Lawthom: And I don't know what to do about the wider issue about women, except to see that. There's very little… in fact, I can't think of any real research around

Charlotte Lawthom: women with learning disability reporting this. So maybe this is something that we need to look at.

Charlotte Lawthom: Another research project.

Sunderland People First: Yeah.

Sunderland People First: Okay. Our fourth question is from Philip.

Question 4 -  Do you think people with a learning disability and autistic people should have a health passport, and why?

Sunderland People First: (Phillip) Do you think people with a learning disability and autistic people should have a health passport, and why?

Charlotte Lawthom: So I'm going to say something that might seem controversial, but I think everybody should have a health passport.

Charlotte Lawthom: And I say that because… people who don't have a learning disability or a diagnosis of autism, also, often really struggle with healthcare, and having to remember what's happened, and telling people things.

Charlotte Lawthom: And if we think about women when they're pregnant, they give you your own notes. So… and the reason that they give you your notes is because they say, oh, it's not safe, and people need to know what's happening, which just makes me think, well, if people need to know what's happening, shouldn't we all be carrying around important information about us?

Charlotte Lawthom: And I guess that… It's about making sure that people look at the health passport and respond to it. Have… have any of you had…good or bad experiences with it?

Sunderland People First: (Karen) I think that's why Philip's asking, because…He, not long ago, spent time in hospital for 3 days, and one nurse asked to look at his passport. Yeah. In 3 days.

Charlotte Lawthom: Ugh! That's really upsetting, isn't it?

Charlotte Lawthom: Did you get to… talk to people about that. Did you speak to the nurse in charge?

Sunderland People First: 3 days for the ward nurse, but it took us 2 days to get a hold of her.

Charlotte Lawthom: Yeah.

Sunderland People First: The ward nurse was told Philip wasn't on it.

Sunderland People First: (Karen) And then I rang her, and she came up to the ward.

Sunderland People First: Does anybody else have a user health passport? I don't.

Sunderland People First: (Bryony?) I don't want one, it's fine.

Sunderland People First: You have a health passport, Andrew? I do. Ian, did you say you do? Yeah, I've got one, yeah. I've got my family that can relay the content of the… what doctors assume, that's what I don't remember. And I don't ever go into hospital, so…

Sunderland People First:  (Toni Ann?) I think the last time I went into a hospital was when Grandma was in hospital last year.

Charlotte Lawthom: Gosh.

Charlotte Lawthom: I think it's really hard, isn't it? Because you've taken the time to have your own health passport.

Charlotte Lawthom: And then… It's pretty shocking that people aren't looking at it.

Charlotte Lawthom: And I wonder… Particularly in hospital, where there's a continual shift.

Charlotte Lawthom: Actually, every time there's a handover.

ideally, those… the nurses would be saying to each other, Philip has got a health passport.

Charlotte Lawthom: They almost… sorry, go on.

Sunderland People First: (Karen) The interesting thing was, it was a new… it was a new young nurse that asked for it. Not people who have been there a while.

Charlotte Lawthom: So I guess that's good in a way that at least the new, younger people are aware of it and are likely to engage in it.

Charlotte Lawthom: But this is the problem with systems that don't work. Have you… Considered writing as a group? to the Body, the Trust that you could report to?

Charlotte Lawthom: So, I wonder whether that would… they'd have to consider it and get back to you, and also give you ideas about how they could, make sure that that happens. So I think…that the system… in Wales, we've just switched from something called ‘putting things right’ to ‘listening to people’.

And I wonder if that's the same in England, but…I'll have a look after the interview, and I'll share any useful information that I can with you.

Sunderland People First: (Toni Ann) Very, you… Yeah, that's… that's brilliant, and I've had a passport, and my mum…I've been through surgery and everything. Sometimes, you know, family members, my family have to come with it.

Sunderland People First: But I've had… I've had brilliant experience from Queen Elizabeth, and I never thought of them, because I did good stuff with it, and made sure that I was comfy, and made sure that I didn't have any nervous breakdown, because I was nervous and everything for something.

Sunderland People First: No, it's really hard for us for that time.

Charlotte Lawthom: Yes.

Charlotte Lawthom: Yeah, I can see the… I'm sorry, sounds awful.

Sunderland People First: Yeah.

Sunderland People First: (name) Yeah, I was gonna make a comment, but I think I'm gonna move on. I don't want to take up too much of time.

Charlotte Lawthom: You can make a comment, it's fine. I'm not in a hurry.

Sunderland People First: Do you think maybe it's just there's not enough people in the system know that health passports even exist? Because everyone should, really. So how would we, like, get… I'm sorry, I'm kind of asking an extra question here, but…

Charlotte Lawthom: Oh, no, so I…

Sunderland People First: People in the know, like, faster, get people to, like, know that these exist and they should be asking for them?

Charlotte Lawthom: So, in every trust, and in every health board.

Charlotte Lawthom: They have an intranet, so, information with landing pages that pops up every time you log in, and then pops up every time you use your email, and they send out circulars with different things.

Charlotte Lawthom: So, in fairness to my… in Wales, they're called health boards, not trusts. So, on my health board, I had a message today saying, Happy Learning… Learning Disabilities Week.

Charlotte Lawthom: But they have things like reminders about governance, reminders about this, so you could… we could ask them to share an example of health passports on the intranet.

Charlotte Lawthom: So that people would see it, and that wouldn't cost them anything, so they couldn't complain about the money.

Charlotte Lawthom: And if you wrote in from Sunderland People First, they might even include a picture of you, and say, this is what this is what happened. And that might be really powerful.

Charlotte Lawthom: And even if it didn't… make changes everywhere, at least it would be a start.

Sunderland People First: That's true. Well, worth asking. So, our fifth question is from Erin.

Question 5 - What type of medication is given to people for epilepsy, and if people can't take this, what are the alternatives options and remedies?

Sunderland People First: (Erin) What type of medication is given to people for epilepsy, and if people can't take this, what are the alternatives options and remedies?

Charlotte Lawthom: Okay, okay, so… Hmm… I think one way to think about epilepsy is as an electrical surge.

Charlotte Lawthom: So, have you ever been in the house, and you've turned on something, like the toaster, or the kettle, and the house… everything's tripped, all the electricity's gone off?

Charlotte Lawthom: So it happened to you. And if it's light, or you plunged into darkness, then you have to go and find the trip fuse, which is like a master switch, and you turn it on.

Charlotte Lawthom: Well… In all of the plugs that we plug in the wall. There's a fuse in there that is meant to stop the whole system crushing. And really, that's what epilepsy medications do. They add in points that stop the surge spreading.

Charlotte Lawthom: And…there are 23 of them so far, so when people don't get on with the first 1, 2, 3, or even the 9th, people like me should be offering you different things. And… what we see…is that if we know what the drugs are like, and we know what their strengths and weaknesses are, so if, Erin, you said to me.

Charlotte Lawthom: I don't want to be…feeling sleepy at all..that is really important to me. I would then say, okay, well, these 7 drugs I won't try and give you, and instead I'll offer you these.

Charlotte Lawthom: If you said to me, Charlotte, my main worry is I'm really anxious, I'd say, okay, well, there are 3 drugs that are really good for mood, so we'll try those.

Charlotte Lawthom: So there are… there are 23 options.

Charlotte Lawthom: they almost… although they can be taken by your vein, they're all… tablets or medicines.

Charlotte Lawthom: And for the first time, coming up soon, there's a patch that you can leave on for a week, and I think that'll be a real difference for some people. Because otherwise, taking medications all the time, it can be difficult, can be difficult to remember.

Charlotte Lawthom: And in terms of what are the other options, well, I'm gonna go through some things from…the least, sort of, invasive to the most. So…there's something called the Ketogenic Diet. Have any of you heard of that?

Sunderland People First: Same as the Keto diet?

Charlotte Lawthom: The keto diet, yeah. So the keto diet was, was…

Charlotte Lawthom: Is really generally used for weight loss. But it was discovered that it can help with epilepsy, And…there's been some debate, because we don't really know why that is, but we think now that it's because when you alter your diet, you alter the bacteria in your gut.

Charlotte Lawthom: And there's a massive link between what goes on in our gut and what goes on in our brain.

Charlotte Lawthom: And there's a nerve called the vagus nerve that connects our brain, our heart, and our gut.

Charlotte Lawthom: And the next thing that is a bit more invasive is you can have something implanted, here, called a vagus nerve stimulator.

Charlotte Lawthom: And that…pulses, it fires every so often, and you've even got a magnet that you can control it with, so if you think a seizure's coming, you can swipe it.

Charlotte Lawthom: So that's really cool, but it does mean that you've got to have this thing, and the battery's got to be replaced every 3 to 5 years.

Charlotte Lawthom: And, there are quite a few people on that. It doesn't seem to be… a cure  but it does… It does reduce the number of seizures, and it controls them. And then, the most, sort of, extreme thing that can happen is you can have surgery for your epilepsy.

Charlotte Lawthom: So either you can say… say that I had epilepsy that was coming from my temporal lobe on this side. What they have done for about 40 years is they've said, okay, we're going to open up the brain, take that bit out, and see how you go. And some of those people even managed without medication. Now, they've started doing, instead of opening up your brain, using a laser that goes through your skull that is totally painless.

Charlotte Lawthom: So, I don't know if any of you have ever watched Star Trek. Have you ever watched Star Trek?

Charlotte Lawthom: I love Star Trek. And they have this wand. You know, I do think we are getting to the stage where we might be able to treat people with lasers and wands and different things.

Sunderland People First: And our last question is from Adam.

Question 6 - What does your day-to-day life look like? 

Sunderland People First: (Adam) What does your day-to-day life look like? How does it go? Do you like DIY?

Charlotte Lawthom: Oh my gosh.

Sunderland People First: So…

Charlotte Lawthom: My… like, do you mean my day-to-day life when I'm not at work? Is that what you're interested in?

Sunderland People First: Yeah.

Charlotte Lawthom: Okay, so my dog, Coco, is the light of my life. She's a black Labrador, so at the weekends, I really like walking her by the river, and she always goes in the water, and I throw sticks for her, and that's such a lovely, peaceful thing to do.

Charlotte Lawthom: And I really like cooking. But other than that, Adam, I'm pretty hopeless.

Charlotte Lawthom: Okay, really hopeless. I find… I find things that other people find easy quite difficult, and I'll tell you a true story.

Charlotte Lawthom: So before I went away to university, and I was leaving the house. I’d grown up with my grandmother, my nan, living next door, and she would do a lot for me, because both my parents worked. And so, other than cooking, I wasn't much good.

Charlotte Lawthom: And… We had a friend called Brian Mathias, who's recently died, but, I mean, he…This is a long time ago, so he would have been probably 35 then.

Charlotte Lawthom: And he said to me, Charlotte, do you know how to wash your clothes? Do you know how to use the washing machine?  And I said, honestly, no.

So, he came back the next day, and he'd written down how to use a washing machine for me, and I took it away with me.

Charlotte Lawthom: And I'm now… I'm better at washing machines now, because I've had to be, but I'm not a very practical person.

Charlotte Lawthom: So I think I'm really good at thinking, and I can read really quickly, but I'm pretty… I'm clumsy, and yeah, I'm not practical at all.

Sunderland People First: Whoa.That's it.  All of them? Okay.

Further discussions, Philip’s story, birthday celebrations and closing thoughts about how we use the session recording 

Sunderland People First: Well, that's it. I think we can bring the assembly to a close, yeah? Is everyone happy with the answer? Yes.

Charlotte Lawthom: Thanks very much, I absolutely loved it, and…

Charlotte Lawthom: I just want to say that  you're right. We're all humans, and we should be interacting human to human, because… how can you expect to trust and take advice from people if they don't feel human to you, and all you see is a sort of a machine and an answer. So, thanks very much. I feel really humbled to have been invited. Thank you.

Sunderland People First: Thank you.

Charlotte Lawthom: Thank you so much.

Charlotte Lawthom: Shall we do a little birthday celebration before I go?

Sunderland People First: Yes!

Charlotte Lawthom: Did we sing Happy Birthday?

Daniel Goodley: It's like getting married.

Sunderland People First: Could you tell us something?

Daniel Goodley: I'm with the father of the bride!

Sunderland People First: (Matthew) I’m getting more embarrassed Daniel!

Charlotte Lawthom: If I start, are you all going to join in?

Sunderland People First: Yeah, okay.

Charlotte Lawthom: Happy birthday to you!

Charlotte Lawthom: joy to you!

Sunderland People First: food.

Charlotte Lawthom: Happy birthday, Tori Ann and Matthew! Happy birthday to all of you!

Yay!

Sunderland People First: Oh, goodness. That's quite a song.

Charlotte Lawthom: Good thing, I can't believe you haven't got a cake, guys. Come on.

Sunderland People First: I had one yesterday.

Charlotte Lawthom: Oh, that makes sense.

Sunderland People First: (Toni Ann) I'm going to an Italian., and well,  I'm 39, and next year it's gonna be me 40 years.

Charlotte Lawthom: Well, that's a big one! That's a big one.

Sunderland People First: I'm gonna sing.

Daniel Goodley: You must tell me what that feels like, Toni Ann, I'm being so old, because I'm only 22 myself, so…

Sunderland People First: I'm not buying… 

Sunderland People First: Lisa, we were… we celebrated your birthday Yes, we did, that's right, we did it. We celebrated Lisa’s birthday 60th. Yes?

Sunderland People First: I don't know, to be honest with you, that's not nothing.

Daniel Goodley: Can I just say, can I just say, that was Charlotte, Sunderland First, absolutely brilliant.

Daniel Goodley: Bye, brilliant.

Daniel Goodley: And, I think those people on Channel 4 need to watch their backs!

Sunderland People First: They do.

Charlotte Lawthom: So, we'll be much better than them, honestly.

Nikita Hayden: I'll get the lawsuit from them soon.. (laughing)

Daniel Goodley: Are you okay, there's a couple of questions I had, and actually, we're making this up as we go along, but I… Nikita, I don't know what you think. I think in terms of the recording of this,

Daniel Goodley: I don't… I'm not sure we should edit it. I think people can see how you put it together, and it went from the start. I think that'll… because, just to remind you folks, one of the reasons to do this is two things. One is to get…you know, Charlotte talking about her experiences and her views and beliefs as a…as a doctor, but also, we're trying… we're using this as an example of how we might be thinking about doing research in interesting ways, which you've always done, obviously. This isn't… I know you came up with this yourselves, and shared this with Nikita, so…

Daniel Goodley: I don't know what you think. I wonder whether we just literally present the recording as it is so you can see it, so people, other groups, for example, might want to copy this as an approach? Any thoughts, or would you rather it be, you know, kind of more professional? And obviously, Charlie, your thoughts would be appreciated too.

Sunderland People First: I think it's more organic, if it's just left. Yeah.

Sunderland People First: It’s more open

Nikita Hayden: I think there are questions about when it starts and when it ends.

Nikita Hayden: Do we include the happy birthday? Because honestly, Charlotte goes so high, and I really… I should be here, and then she’s here, and then I go here, and it's not good. So I don't know, I'm a bit nervous about that, I'll have to listen to it back.

Nikita Hayden: Oh, we have to have… Are we happy to do the introductions as part of the recording?

Sunderland People First: Yeah, absolutely.

Sunderland People First: as far as the editing goes, you can maybe, like, cut off some of, like, maybe the dead air on, like, the start and the end, but other than that, like…

Sunderland People First: Apart from, like, at the start when we couldn't figure out the audience… Yeah, like, still putting out the tech issues. Oh, yeah! Yeah, it starts from when we all said who, like, names and stuff. Yeah. Yeah.

Charlotte Lawthom: Yeah, I'm really happy with all of it, because it felt, did feel really organic, and it evolved, didn't it? And I loved it when you added in the extra question, and when you laughed at things I said, and… and it's just, yeah, it's lovely. I think it should feel real.

Sunderland People First: Yep.

Daniel Goodley: While we've got you, can we just ask, Charlotte, how… how many minutes, hours did you prepare for this, or did you just go for it? Just… did you just open yourself up to it and just think, well, I'm gonna go for this?

Charlotte Lawthom: So, the hardest question was the film because I had a top 3, and I couldn't decide. And, the other questions…

Charlotte Lawthom: So the health passport was… Nikita said to me, you might… you might want to think about this, but to me, that's…it was instant. I was just thinking, no, we really need to have them, and I… I was really struck by Philip's story that, you know, only one person looked at it, and that… that tells us something about the fact that, actually, trying to humanise healthcare is an uphill battle.

Sunderland People First: Yeah, man.

Daniel Goodley: Yeah.

Sunderland People First: (Karen - about Phillip) Feels like he's an alien when he goes into hospital.

Charlotte Lawthom: Oh, I'm so sorry!

Sunderland People First: He has me with him all the time, so somebody… that doesn't have somebody with them, an appropriate adult, must be feeling even… Karen.  Karen by name, Karen by nature.

Charlotte Lawthom: Yeah. I think that's right, isn't it? So they've tried to introduce, I don't know if they're legal or whether they're just NHS rules, but basically there is some information about people who need somebody with them who are entitled to have somebody with them.

Charlotte Lawthom: But of course, imagine if you were ill, as well.

Charlotte Lawthom: It's things like that, when people are vulnerable, that causes massive issues.

Sunderland People First: Charlotte, Phillip has to have somebody with him, and if you try removing it, be on your head, not mine.

Charlotte Lawthom: Yes, yes.

Sunderland People First: (Karen) I was there and go, even during COVID, I rang up and said, if Philip has to come in, I'm coming with him, no matter what you do.

Charlotte Lawthom: And did… were they okay with you about that? Did you get any pushback?

Sunderland People First: (Karen) I have to be.

Charlotte Lawthom: Yeah, I completely agree with you, but did they agree with you, or did you need to put up a fight?

Sunderland People First: (Karen) We didn't need… we didn't go in for…

Charlotte Lawthom: Okay.

Sunderland People First: Me and Philip have been together 62 years

Sunderland People First: And there's no way that they would know him like I do.

Charlotte Lawthom: No, of course not, of course not.

Sunderland People First: (Karen) Like Lisa just said, my name's Karen, and I'll stick by him no matter what.

Sunderland People First:(Karen)  throwing me where then it's your problem, not mine. Yeah.

Daniel Goodley: Yeah, no one is gonna… noone’s gonna step in front of you and tell you.

Sunderland People First:  (Karen) No, no. I've had doctors say we'll put him on the bed, and I've said, no, you're not, he can't lie down, he'll be sick, no. And they look at us, and I go, no.

Daniel Goodley: Yep, yep.

Charlotte Lawthom: Yeah. And of course, really, people should be saying. Not… get on the bed, but… where's best for me to examine you?

Sunderland People First: (Karen) He's like a worm.

Sunderland People First: (Karen) Lying down. And he would fall off the end of the… then bed.

Charlotte Lawthom: Yeah, so you feel pretty awful lying down, do you?

Sunderland People First: (Karen) Others, he can't sit up, although he's sitting in his chair, he can't sit up.

Sunderland People First: (Karen) So, if he was being sick. He would… there's a chance that he could.

Charlotte Lawthom: It could go back the wrong way. Yeah, I get it. I get it.

Sunderland People First: Yeah.

Daniel Goodley: Great. I'm conscious of the time, I know you're busy people and stuff. Nikita, is anything new, any questions you want to ask, our teams here?

Nikita Hayden: Just if it makes sense to you, can we keep that bit of discussion just now, where Phil and Karen were talking to Charlotte? Is that something everyone's comfortable with? Yeah.

Sunderland People First: Yeah, not a problem.

Nikita Hayden: Are you okay as well with that being included in the recording?

Charlotte Lawthom: Yeah, absolutely.

Daniel Goodley: Yep.

Sunderland People First: (Lisa) Dan, can I ask something?

Daniel Goodley: Yep.

Sunderland People First: So, you know, I assume this is going on… is it the iHuman website, or anything like that? Yep. If we've got anything else that we would like to share around people's experiences, because I'm just thinking of one self-advocate that shared a story, a part of her life journey, on Facebook, and she'd love to share… I haven't spoken to her about sharing it on your website, but I think it would be really good, because it talks about how she was in mental health hospitals for a long time, and then she went to… she was moved to one particular hospital, and they just…saw her as a person and it changed everything.

Charlotte Lawthom: Bold.

Sunderland People First: It would be really… I just immediately thought it would be great for the iHuman website.

Daniel Goodley: Yeah, great. I mean, so there's just a couple of points on that. Nikita and I'll be talking, but we'll be putting this on different parts of our website, but we can also link it back to our Human Health in Healthcare website. There's that. Absolutely, we'd love those stories. And the other thing to say is, just to remind you that this is… we're sharing the intellectual property here, because you, you know, it's a… it's a collaboration, it's a coming together. Yeah. So, frankly, you can do whatever you want with this film. 

Daniel Goodley: Other than, you know, obviously sell Charlotte as a public speaker without giving me a cut of the money. So we'll talk together without Charlotte about that percentage later.

Daniel Goodley: Any other… any other thoughts, folks?

Sunderland People First: (all) No.

Daniel Goodley: Right.

Sunderland People First: (Toni Ann) No, it's good to see you, I mean, because we saw you… December was our last one.

Daniel Goodley: No, and as you can see, and as you can see, Toni Ann I’m getting younger by the day.

Daniel Goodley: Well, listen, thank you so much for your time, and also, thank you for this idea. It's a brilliant idea. Thank you so much.

Charlotte Lawthom: Brilliant idea.

Daniel Goodley: I want to say a big thank you to Nikita as well, who's been doing all this work in the background, and a round plus to Nikita, please.

Charlotte Lawthom: Bye Nikita!

Sunderland People First: Thank you

Charlotte Lawthom: Thanks so much.

Daniel Goodley: Well, thanks everybody, you take care.

Nikita Hayden: Bye, everybody!

Nikita Hayden: I'll kick you guys out. I wanna see what happens with the recording.

Sunderland People First: Do we leave?

Daniel Goodley: You can leave, Chuck.

Nikita Hayden: Yeah. Amazing. 

End of recording and transcript

Transcript of ‘The Assembly’ session with Rohit Shankar  - 30th June 2026

Contributors: 

• Professor Rohit Shankar
• Sunderland People First - (inclusion of names to be confirmed)
• Nikita Hayden
• Bojana Daw Srdonavic 

Sunderland People First: There you go.

Nikita Hayden: I'm really, I'm really, really sorry, Rohit.

Rohit Shankar: Okay.

Nikita Hayden: I'm sorry, you're gonna have to do it beautifully like that all over again. Okay.

Rohit Shankar: Sorry about that. So, hi, everyone. So, yes, as I said, my name won't change, it's still Rohit.

Rohit Shankar: I'm a doctor. And I'm also a researcher. And as a doctor, I tend to look after people with intellectual disability, particularly looking at their seizures.

Rohit Shankar: But more than the seizures, I also try my best to understand how that impacts on their day-to-day life, their mental health, other medications that get prescribed for, say, constipation or tummy getting bunged up, mood, … I'm trying to understand what's the best deal we can get for this very vulnerable and complex group.

Rohit Shankar: So, and my research is the same.To look into that and, part of it is also working with other organizations, like Social Care, Royal College of Psychiatrists and trying to bring different thinkings together. So that we can all… join up and…see what looks good, and what good is… for you. And whether you agree with that.

Rohit Shankar: So that's me. And I am based in the southwest of, UK, in Cornwall.

Nikita Hayden: Brilliant, thank you, Rohit. I wonder if we can get everyone that's in the main room to introduce yourselves? Matti, can we start with you, please?

Sunderland People First (Matthew) Okay, so, hello, I'm Matthew, I work here at Sunderland People First, I'm an advocate.

Sunderland People First (Matthew): Which way we're going, this left or right?

Sunderland People First: (Toni Ann), I'm Toni Ann,  I'm from Sunderland People First, and I'm a self advocate. 

Sunderland People First: Hello.

Sunderland People First (Andrew): My name is Andrew Cowe, I am an advocate of Sunderland People First.

Sunderland People First: (Darren): Hi, I'm Darren, I'm Andrews PA

Sunderland People First: (Nathan) Hi, I'm Nathan, I'm one of your autistic advocates here.

Sunderland People First: (Ian) Hi, I'm Ian, one of the officers and the Director here.

Sunderland People First: Hi, I'm Adam, I'm one of the other autistic advocates.

Sunderland People First: I'm Bryony, and I'm one of the other autistic advocates.

Nikita Hayden: Excellent, and we have Lisa in the background, do you want to introduce yourself?

Sunderland People First: (Lisa) Hi, I'm Lisa.

Rohit Shankar: Nice.

Nikita Hayden: Fantastic. And I'm Nikita Hayden, I'm a researcher who's been working with some of the guys from Sunderland People First for a few years, and Bojana Daw Srdonavic, do you want to introduce yourself as well?

Bojana Daw Srdonavic: Thanks, Nikita. I'm Bojana Daw Srdonavic. I used to work alongside Sunderland people first, Rohit and Nikita, on the project Humanizing Healthcare, and I'm at the moment working as a researcher alongside Rohit in Cornwall. I'm interested in learning disabilities and how we can make healthcare for people with learning disabilities better.

Nikita Hayden: Wonderful. And the reason we're all here together today is because some of the people first want to ask some questions to Rohit as quite a powerful learning disability psychiatrist in this country, and they have lots of things they want to ask you, so I'm going to hand you straight over to Matthew, who's going to lead this discussion.

Sunderland People First:(Matthew): Okay, so, welcome, Rohit, to, Sunderland People First Does ‘The Assembly.’

Sunderland People First: (Matthew) So, today we've got a set of six questions that we'd like you to answer, and we just want to get to know you more, not just as a doctor, but also more as a person. 

Sunderland People First: Everyone here in the room, we're all about humanizing healthcare, but it's only really going to work if it goes both ways. So, if we want patients to be more than just patients, and be people, we want the same for the people who, the professionals who are more than just their job.

Rohit Shankar: Totally.

Sunderland People First:(Matthew) So, that said, some of the questions today are gonna be about, like, the kind of things that we wouldn't normally be comfortable about asking in, like, an appointment or any kind of professional setting, so there's going to be some like that.

Sunderland People First:(Matthew) But today's gonna be all about the day we can start breaking down barriers between people, between patients and doctors, and just make things more human.

Sunderland People First: (Matthew)So, I've gone on long enough now, so, I'll pass… I'll pass on to Bryony, who's going to introduce the ground rules. So…

Sunderland People First: (Bryony) Let's do the ground rules before we really get our assembly going.

Sunderland People First: (Bryony)  No subject is out of barns. No question is off the table, and anything might happen!

Sunderland People First:  (Bryony) And now the long awaited questions!.

Sunderland People First: (Matthew) Who's going first? Oh, it's me, sorry. Okay. Right, so,

Question 1 - What do you feel needs to change, from now to the future when it comes to Health Passports?

Sunderland People First: (Matthew)This first question via Rohit is one thing everyone in here would like to see changed? So people with a learning disability and autistic people, feel that health passports are really important for those who use them. But could you ensure that hospital passports are always used, and become mandatory to read, and while kept to an accessible standard, that becomes clearer for the user?

Sunderland People First: (Matthew) So, for example, like, electronic versions that some people might use, and for people who might wish to type, things like that, and to be kept up to date as well, more easily.

Sunderland People First: (Matthew) So within your new role that you're in now, what do you feel needs to change, from now to the future when it comes to Health Passports?

Rohit Shankar: I think that's a very good question. To which I might sadly not have a good answer but what I would like to highlight is that health passports are a must when it comes to those with intellectual /learning disability and/or autism.

Rohit Shankar: The question is why?

And you know it better than me, that…there have been challenges about communication, but more importantly, people also have multiple issues, health issues, social issues, all of which even for somebody like me to go and tell about all my health issues and social issues, I won't remember it. 

If I have to go to a GP, I would go to a specialist. I'm going to struggle, especially with my anxiety. If I have anxiety about my condition, or worry about what I'm doing I would be really… struggling to tell everything that I really want to tell people.

Rohit Shankar: So, I personally think that for all of us, we need to be in a way that there should be a health passport, but particularly for those with intellectual disability/learning disability, and/or autism. It's a must. But the challenge is always, yes, creating that is easy in one way, yes, we can have one, how it gets used, and in the different settings - that's been the big issue. 

And for that, I think we as health…and social professionals need to put up our hands, because we don't think about this in an active way.

Rohit Shankar: And for that, I think… we have to be building that training. So, very much, when nurses go to nursing school, when doctors go to medical school, when social workers go to social work school.

Any care professional, when they are going there, there has to be a mandatory inclusion of recognition that health passports are part and parcel of a patient's journey, especially those with intellectual disability and/or learning disability.

Rohit Shankar: The… thing which is there is we won't forget our badge, will we, when we go to work? Because…we need to have that. We won't forget gloves, if you have to… Check on somebody

Rohit Shankar: How come this is not becoming that second nature in our professions to do that? and I think we have to be saying that, to say that it's okay to be not be okay.

And to be reminded of it so where we can, and we should, we should be keeping an eye on each other's professions, to say - are you doing it? Are you making sure that if you've got a person with intellectual disability, learning disability, autism, that you are checking on that? 

Rohit Shankar: One of the problems that we have is the healthcare service, as you all know different places do different things. Everyone has the best thing in heart, but times, there is a lot of patients, lots of things happen, vacancies are there, number of people doing things are less, and in these things, things get forgotten, which is not right, I'm not justifying it, but it's important to make sure that these are done, and one of the ways to do it, and I have been thinking about how to bring that about, is by bringing in mystery shoppers.

Rohit Shankar: So, Nikita, Bojana Daw Srdonavic, and I have been talking about it, is…yourselves.

Rohit Shankar: You are purchasing a service from us. In reality, that's what it is. You employ me through… And my job is to serve you. So when you come in, you can actually be a mystery shopper to find out, okay, what is actually happening? Are you actually asking me for a hospital passport? Are you actively asking me if I've had an annual health check or not? So, key things, which are very important, because not only is it important for you, it's important for me.

Rohit Shankar: Because if you have had those things, it gives us a layer of assurance about what all checks have been happening. So it's… it actually helps me in my job when I do it, because if I know you've had an annual health check, I don't have to worry about certain things, because the GP would have taken care of it. 

Rohit Shankar: So I don't have to reinvestigate you on certain things. So it is that, and…when it comes to my new role, I mean, my new role as Chair of the National Faculty for the psychiatrists who work with intellectual disability, people with intellectual disability. Part of it is raising that awareness, but part of it is also getting them to go out, and raise awareness in the settings that they have.

Rohit Shankar: So, we will be pushing with that, and as I said, it can't be done without co-creation and co-production of yourselves, so it's not about us doing it alone, what about we doing it?

Rohit Shankar: And we, as a group, will be a very powerful one to raise that voice. And I think that's where I see this headed to. The other thing which I want to say is that it is about creating capable communities. So it's all well and nice to have one service or two services in a particular area, which is really good and understanding. But what about the community itself? If you go to the ED, if you go to social care offices, if you go to, say, your GP, it should be uniform service, whether you're in Hull, or Cornwall, or in Basingstoke.

Rohit Shankar: And for that to happen, the community has to be aware of the needs and understanding of what's needed for those with intellectual disability and why. And I think there is that grassroot level of understanding and thinking, which we have to do, and that means that promotional work means more videos, more knowledge, raising the profile in media to say that this is important, because things get left behind. 

Rohit Shankar: I can give you an example in this. You've got the latest NHS10 plan, which came out from the government. It mentions intellectual disability only once in the whole document. Just once. Whereas in the 2019 one, it was 44.

And I raised that, I wrote a paper on that, saying that the reason for that is people… the politician, the MP, won't think what's happening to people with intellectual disability if you are not actually saying it actively and leveling up the issue there. And that's the reason why we have to keep fighting for it. Look at the digital apps, NHS app.The NHS app has no facility, as far as I know, to include easy, data putting in and checking. But then everybody's getting moved to the NHS app.

Rohit Shankar: And we have to fight for that, because that's where… so health passports are just one important thing among a myriad of things, but are a big symptom of how society

needs to change to become capable communities, and we have to continue fighting, and you'll find me a very strong advocate, and my colleagues in this journey.

Sunderland People First: (Matthew) Thank you, Rohit. I really liked your answer about… you mentioned the new role that you're in, but it can't just be all on you. You're gonna pass on, what you'd like other people to do, and then for them to also tell everybody what you know to everyone they know. So yeah, I think that's gonna be really important, and thank you, Rohit. 

Rohit Shankar: It's because we all live in a community. It can't be somebody else's business.as such. It's like we have to work together. You, me, the dentist, the baker, the plumber, all of us. We are part of a community.

And there is no one… we have to sit in that community, and people have to know and appreciate each other's strengths and challenges, and support it. I think that's important to recognize that. So creating capable communities is mandatory, and the Hospital passport is integral to that.

Sunderland People First: (Matthew) Thank you. Right, who has the second question? 

Sunderland People First: (Lisa) That's number 2. Who's got number two? Do you want to stand up so you can hear it better?

Question 2 - What made you go into this profession?

Sunderland People First: (Adam) What made you go into this profession?

Rohit Shankar: So… When I first came to psychiatry, particularly to work with people with intellectual disability  it was…due to total selfishness. Mainly because, first, I wanted to actually sort of realized that getting things right for this population, especially diagnosing medicine, getting the evidence right, is very challenging. And it's, like, a complex puzzle.

And it's something which… I love puzzles, 

Rohit Shankar:I love challenges, and the more complicated, the better.But then, when I started working with people with intellectual disability, I started realizing that they're not just a puzzle.They are very complex individuals who have a myriad of, or a lot of different ways, and thinking, and strengths, and sensitivities. And there's a lot that I can actually learn from them, which I can then use to help others in their situation.

Rohit Shankar: So, it was a journey of self-realization. So, started pretty selfishly, I'll put up my hand to that. And I've enjoyed every moment of it, mainly because No problem, if you consider calling it a problem, or a no issue, it's a small issue.

it has got complexities. There's a human being involved in it, and trying to solve that problem for a human being involved in it, and where…I'm not saying that I often get it right, but when we do get it right, it's one of the most rewarding things and satisfying things. Not to bring happiness into me, but to just feel, oh, something that I have learned, all those years of knowledge and studies is working somewhere. So, and similarly, when the frustrations we feel with yourselves, when systems don't work, when good people block us out.

Rohit Shankar: It's even more something which makes me more…initially angry, as I would, but then I start thinking ‘Why are they doing it?’ And I want to change the system, not the people, but the system, because people usually are intrinsically good, and it's about changing that. 

Rohit Shankar: So you can say that the reason I'm here started with wanting to do the best for myself, by taking on the complex problems, but now it's changed, where I want to work with you to make a difference to a chunk of a group of people who I feel if we make a difference, it can be very rewarding, but there is a third reason.

Rohit Shankar: The third reason is that if we get it right for some of the most complex people  and their needs. So, if somebody has 5… conditions. And we get a solution working for them, that's going to work for me when I'm 80, or 85, when I have 5 conditions.

Rohit Shankar: So it's almost like if I build the ramp now, instead of the steps, I might not need the ramp now, but someday, I'll be in a wheelchair when I might need the ramp, or somebody I know will need it. So better get it right now for the most complex and vulnerable.

Rohit Shankar: And I think the final point is, humanity. Humanity should be defined as how we look after the most vulnerable, because in a way, the most vulnerable teach us how easy it is for ourselves, or our near and dear ones, to end up in the same state. So, it's very much, as I said, it is about creating a community, because there are no differences. I'm a doctor, I've trained for it, I've got some extra knowledge in things, but the rest of the things, I'm very much like you, in that sense.

Rohit Shankar: So I think that's important to balance out. So these are the sort of 4-5 reasons why I think working with people with intellectual disabilities so rewarding, and by… I mean, the other thing is I don't see it as work. I enjoy it. I don't even understand why people… I'm very fortunate in that I get paid a lot for doing what I do, but I equally, I do enjoy the challenge of it, and finding solutions, and working with yourselves.

Sunderland People First: Thanks, Rohit. Thanks, Adam, okay, who has the third question, number 3? 

Question 3 - How do you distinguish between a non-medical remedy worth trying and something dangerous? For example, MMS solution? And have you used or seen, non-medical remedies being used? 

Sunderland People First: (Bryony) How do you distinguish between a non-medical remedy worth trying and something dangerous? For example, MMS solution? And have you used or seen, non-medical remedies being used? I needed to ask what MMS is. Sorry for my ignorance, but .

Sunderland People First: It stands for Miracle Magic Solution. It is used in…America, it has been for quite a while. It's considered a cure for everything from cancer to autism, and it's bleached. Right. To be given up to 8 times orally a day, up to 3 times by enema a week.

to children, and when those things coming out of them that are actually bits of their gut lining, it's like, no, that's the worms escaping. And it was kind of made more famous when President Trump said, this will cure COVID.Yep.

Rohit Shankar: I mean, thank you for that. I mean, I can reassure you, the very fact that I had never heard of it means that I wouldn't ever go anywhere near using it. But, I… just coming to, say, non-medical intervention and medical interventions. So, I think one has to be very clear that non-medical interventions or medical interventions, both have to be supported by a good evidence base. There has to be reasonable science. I'm not saying excellent science. Reasonable science to use it. But equally one shouldn't be using it without a sense of what the benefit of it is. Where does one want to get to? But on top of it, it has to be as much as possible in agreement with yourselves..so, basically, it's a partnership between patients, families, and the clinicians.

Rohit Shankar: Now, one of the big challenges is… so, there are a lot of non-medical interventions which are definitely very helpful and useful. Therapy.

Rohit Shankar: therapy where you can work with somebody's thoughts and help them with becoming more positive, say, if they're feeling low, or they're feeling anxiety, or they feel repulsive about certain things. You can work, and there have been very successful therapies which help so - non-medical models, talk therapies work. We know that. Equally, medical models, when used badly or without any sense, can cause harm. We know that also. And I think it is about identifying what might be the best fit.

Rohit Shankar: It is about giving choice, so it's not about saying, right, this is it, take this, X will do better, and Y will happen. No. I usually like to work with my patients and their families. 

I usually like to say, this is the range of options. This one has X evidence, and this one has Y evidence. We can try it, this might work better for you, but we don't know, and if it stops working, we can go to the next one. What's your choice? And we sort of work our way through various choices, and at the end of the day, it's your body.

Rohit Shankar: And it's… everybody's body is a temple.

And we need to make sure that we don't, wrongly step and upset that in any sense of harm. And for me, doing no harm is a very important thing. So it's always a balance about how we work with what is there.

Rohit Shankar: A lot of the work that we are doing is actually non-medical nowadays, because first and foremost, we try to understand if somebody comes in a distress and anger. We try to understand what's it in… you don't give them a pill. There is no happy pill. What we first try to understand is, what's happening in your life? Why are you so upset? There might be reasons why you're getting upset about it. It might be because there might be a dental pain.There might be somebody who's bullying someone.All these things have to… you can't solve it with medication. It's only if and when we feel that there is a reason for medication, there is a reason why we can't find why you're being anxious, why you're feeling very low.

And we feel that sometime we need to lift up your… or if there is seizures -we need to control that. That's when we would use medication, in discussion. Hopefully, for the right reasons. I hope that makes sense.

Sunderland People First: (Bryony) Yeah, that makes sense

Sunderland People First: (Matthew) Yeah, thanks, Bryony. Question number four, 

Question 4: What would you say to somebody who thinks that somebody with a learning disability does not have the capacity to use psychological services?

Sunderland People First: (Nathan) I'll retry that. What would you say to somebody who thinks that somebody with a learning disability does not have the capacity to use psychological services?

Rohit Shankar: That's a very good question. So when the individual themselves might not be able to participate directly, we need to, first and foremost, check whether there are ways in which we can adjust what we are doing to get them engaged. 

So, for example, if it's a communication issue - is it something where we can help somebody communicate better? Or… support them in communication to make a difference.

Rohit Shankar: There are people, as you well know, who might not be able to think through what is getting said, and talk back about it. But in such a situation, there is…there are therapies which would include their families and friends. Now, people's families and friends know them the best.So sometimes, it makes sense to work with them to say “Okay, we think… Johnny is struggling.”

Yes, Johnny is not able to participate in directly discussing his concerns, and for us to, sort of doing therapy with him, or do any sort of work with him, but…can we talk to you about how you might want to work with Johnny by saying if he's getting upset about something, what does he like to do? Is there some TV program he can see? Go for a walk. What can be done, activity-wise?”

Rohit Shankar: We would also talk about how the individual might have certain sensory needs. So the thing is, it might be… we recently went through a heat wave. Now, the heat may cause some people who cannot fully process what a heat wave is to become very upset about the way they are feeling and how they're feeling.

Rohit Shankar: But… At that moment, those who know them well might be able to take them to the swimming pool. I'd be able to take them to the beach, get them…ice creams. There is so much you can do to work with the individual. But also, if there is… if certain situations are causing them anxiety. So we know that, say, in the past , they were in one school or somewhere where they got bullied, hit, or punched, that knowledge is important, because we don't want to take them near that, because the moment they start seeing that, they'll become anxious and start pushing and things. It's not them. I would do that. I wouldn't want to go to places which have not been nice to me. So it's that, I think, which we have to… and say, we want to go,say, to the dentist. Everyone, no one likes to go to a dentist, however nice they are, I mean, the very thing is, that itself is a scary thing, but we can make it much more relaxed.

Rohit Shankar: We can help them and their family understand what will make them, a nice sticker, will it help them? They're being courageous, they're being strong, so it's working to the individual's needs. 

Rohit Shankar: It's almost like having a diet. Like, we enjoy different foods.

And it's trying to give them different experiences to engage with them. So, I would always say that just because somebody is not able to participate actively in two-way, like, this talk and discussion doesn't mean that we should just get rid of the psychological therapies, because psychological therapies, the very fact means that you're working to the individual's thinking, and every individual thinks.

And it's about how we get to the thinking. That's the way I would put it.

Sunderland People First: Brilliant, thank you. It's beautiful. Question number 5.

Question 5 - What is the most unusual food you have ever eaten?

Sunderland People First: (Toni Ann)  I have eaten kangaroo. What is the most unusual food you have ever eaten?

Rohit Shankar: You're going to be so, so disappointed in me. You are such an adventurer.

Rohit Shankar: this, so I am, Hindu Brahmin. So, basically, a priest. And basically, I've never, ever eaten, any non-vegetarian fish. Or anything. Well, it's part of our… this thing.

Rohit Shankar: The thing which is there is relative comparison, so my grandparents wouldn't ever eat anything that's grown under the soil, so no potatoes. Imagine a world where you can't eat potato chips, so… but it's, like, no potatoes, no onions, nothing.

Rohit Shankar: My parents… wouldn't eat egg. I eat egg. So I've moved one dimension farther. My children eat anything and everything. So, it's a gradual transition. Hopefully, my grandchildren will be eating all the exotic food which you are eating, so I'm pretty confident that will happen there. 

Rohit Shankar: So, sorry, it's a bit of a disappointment, but yeah, all I can say…is egg is the only exotic thing, I think, about this thing. And I ended up with a bit of egg on my face, yeah.

Nikita Hayden: So what animal is the egg from? Is it an ostrich egg? Because that would be interesting.

Rohit Shankar: No, just, just ordinary eggs. Super, supermarket eggs, yeah, whatever they are, yeah.

Sunderland People First: (Matthew) We've got our last question here from Andrew. 

Question 6 - What superhero name and power would you choose for yourself?

Sunderland People First: (Andrew) What superhero name and power would you choose for yourself?

Rohit Shankar: So… This is actually true, okay? So, I see myself as a parking ninja, or a parking goodai. There is never, never a time when I won't find a parking space for parking. Never. It's never happened that I've had to wait or anything. Anywhere I go, you take the busiest car park. Somebody will pull out their car while I want.

Rohit Shankar: So, I'm never late for any meetings. You can ask Bojana Daw Srdonavic about that, she'll tell you. Never late for any meetings. Never worry about getting early and parking. No, because I'm so confident that whenever I get there, somebody, somewhere, is going to remove their car. It's not possible at all that it's not going to happen. 

So that's my superpower. I've got a… I'm like a parking Jedi.

Rohit Shankar: Didn't expect that one, did you? But it's one of the most useful superpowers in Iron Man and all that. What is it? They can only just say…find parking. If Iron Man had to park, I challenge you, they would never going to get that parking space, whereas I can. Not especially given all these, devices and everything. So, yes. So, I'm… I'm the parking Jedi.

Sunderland People First: (Matthew) So you're the one who's always been stealing them when I've been on trips as well?

Rohit Shankar: Well, it is… but it's also good to know that if I'm in the car of somebody, they will also find parking. It's incredible, so it's like, just, if I'm in somebody's car.

And I've been to some of the most busiest places, and I've said, test it out, you don't have to worry, you'll find parking, and…round and round and round the mulberry bush, none of that! 

Rohit Shankar: It's basically, I'm so confident about it, because there are times when, I think, once or twice, when I think, what happened? Where is somebody? Somebody's not lived up to their expectation of me coming, and not withdrawn their car, and voila, within 30 seconds, somebody will be moving out.

Sunderland People First: (Nathan) Do you think you're, like, so confident in it that if you couldn't find this parking space, it would be a legitimate traumatic event in your life?

Sunderland People First: (all) Oh! (Laughing)

Rohit Shankar: It's not happened at all.

Sunderland People First: (Nathan) See, you… it's not even possible in your head.

Rohit Shankar: It’s not possible at all, because..

Sunderland People First: (All Laughing)

Rohit Shankar: There has to be a parking space. It's my… I would have missed something or something, but yeah, there is no way. And as I said, someone will take out their car for me. That's a fact. There is no second. 

Sunderland People First: Gotcha.

Rohit Shankar: Cool.

Rohit Shankar: And I pity all the… so you sometimes get into these car parks where everybody's already circling around, 3 or 4 car parks are going, and you join that thing, but as soon as I join, somebody takes it out, and I get my parking. So…

Sunderland People First: (Matthew) That’s the Ninja power!

Rohit Shankar: Maybe it's linked to me just eating eggs.

Sunderland People First: (Laughing) That's the case.

Sunderland People First: (Matthew) So do you think as, like, down the family line, the more and more foods get introduced, the more superpowers will start developing? Is that the idea?

Rohit Shankar: Yeah, I think they'll lose the superpowers, the way it's… but yeah, I think, but it's one of the most incredible superpowers, I think, getting parking when you want it, so…

Sunderland People First: Depending..

Nikita Hayden: when you go for the NHS? When you work for the NHS, when you work for the NHS, and you have to go to NHS hospitals. It's the best, best, isn't it?

Rohit Shankar: Okay, yeah, but also there is another clause there. So, I have my own parking. I won't go without my parking in NHS hospitals. That's it. If they want me so badly.

I have to have my parking.

Sunderland People First: (All laughing)

Rohit Shankar: clear about it. So, because I won't waste patients' time. So, you see, one of the horrible things is when you go to a clinic, right, you go there, and I've had this, where you are sitting there for 20 minutes, 25 minutes, you're sitting there doing nothing. I don't understand that. For good or for bad, I run exactly on time.

There is… my clinics run… so what happens is, what's nowadays happening is, my patients and families come 10 minutes early, I'm ready for them 10 minutes early, so they come 10 more minutes early. So it's like, we are trying to play catch-up nowadays, in one thing. So nowadays, I finish my last appointment half an hour early, in one way, because it's… quick, and we have parking for them, and I always make sure our patients have parking. That's one thing that's important for me, because if they don't have, then I'll run late, so I make sure that they have parking. So we are all very systemized,

Rohit Shankar: Not only am I… I'm like a… I'm like… maybe I should… I'm like a parking zombie, or a vampire, because everyone who comes in contact with me, my patients, they also become .. get parking, then. That's the thing, see?

Sunderland People First: (Matthew) There we go. I think that's the first time I've heard someone actually have a superpower, like…

Rohit Shankar: That's the thing, see? That's…

Sunderland People First: (Lisa) Parking Ninja Turtle.

Rohit Shankar: Yeah, that's the thing, parking ninja, or the parking yoda. I prefer to elevate… there are too many ninjas going around, too many Jedis going around, but the Yoda is one.

Sunderland People First: (All) Yoda

Rohit Shankar: And I'm unique in that, to have a parking yoda. That's it, so…

Sunderland People First: That's important.

Sunderland People First: Thank you, Rohit. I think that's everybody's questions. Yes. Yeah, thank you so much. Yeah, thank you. Thank you all very much.

Rohit Shankar: And, really appreciate it. And, it's been an honour, I should say and privileged to be interviewed by yourselves.

Nikita Hayden: Wonderful. Should we thank Sunderland People First as well, for their brilliant questions and for leading this today? Fantastic work, everybody, thank you so much. Yeah, you've done brilliantly. Rohit, thank you for answering all the questions so honestly and so openly.

Nikita Hayden: And you'll be really glad to know that, we're not gonna make you sing. We made Charlotte sing in the last one, she led us all in a song. So, we won't make you do that.

Rohit Shankar: You should always remember that what you hear and what you see, you can't unhear and unsee something…

Sunderland People First: (All laughing) sweet.

Rohit Shankar: So, I think you made a wise choice, sticking to superpowers. It's not part of my superpower report, I put it that way.

Nikita Hayden: That's good to know that we made the right choice then with the person we were going to get to sing to us. Yeah, thank you all so much. We will end it there, unless someone else wants to ask something or say something.

Sunderland People First:(Lisa)  I do have something to ask.

Nikita Hayden: Yes, go ahead, Lisa, please.

Sunderland People First:(Lisa)  Not… it's not part of this, it's just after something, you know, one of the questions Rohit kindly answered, and, it's just, Rohit, have you heard of Learning Disability England?

Rohit Shankar: Yes. I’ve worked with them.

Sunderland People First: (Lisa)  Oh, great. So, in that case, they are… we are members of Learning Disability England, and we have worked with them for many, many years.

Sunderland People First: (Lisa) But they are, and we are, because all the members, are writing a letter to government, and it is being personally taken to 10 Downing Street, in July, around the, significant health inequalities and poor health outcomes for people 

And I just wondered if you would like to sign it?

Rohit Shankar: Oh, yes, of course, because Samantha Clark, she keeps emailing me twice a week, so I know her very well. She's on our grants and various… I work very closely. She's also pulling me into something about housing issue 

(Sunderland People First: (Lisa) Great.) ..

Rohit Shankar: So, yeah, I mean, I'm big fans of, LD England. I mean, LD England and all the other charities. I mean, you all do such fantastic work in one way, and it's soul-rendering at times, so I think it's important to support it unconditionally, so…

Sunderland People First: Thank you. And that goes, obviously, for, Nikita, and, Bojana Daw Srdonavic I'll email it to you, so you can sign it, if you wish to. 

Rohit Shankar: Definitely. My pleasure.

Nikita Hayden: That sounds brilliant. I don't know whether we can also try to share it with people that we know as well. Yes, please do.

Sunderland People First: (Lisa) Yes, it’s an open letter.

Nikita Hayden: If you share it, we can forward it on. Okay, so in terms of next steps, in the next couple of weeks, I'll be downloading both of the videos. We have the one with Rohit, the one with Charlotte, and I'll be pulling them together.

Nikita Hayden: Last time, Rohit for context, and Bojana Daw Srdonavic, we talked about allowing the process to show a little bit, so we're not going to over-edit or over-cut things, especially because both of the interviews have gone, I think, quite smoothly, the questions have been smooth, and there's not been any jarring bits, but I'll listen to them both, and I will cut and tail them, basically. And then I'll share them with everyone before we share them more widely. Does that sound alright to everyone?

Sunderland People First: (All) Yes? Yes.

Bojana Daw Srdonavic: Yep, perfect, yep.

Nikita Hayden: Basically, at some point, probably mid-July, you're gonna get the videos to look at before anyone else does, okay?

Sunderland People First: (All) Yep. Great, thank you.

Bojana Daw Srdonavic: Thanks.

Nikita Hayden: Right, just one last thank you. Thank you, everyone.

Sunderland People First: (Lisa) Thank you, lovely to see you.

Bojana Daw Srdonavic: Thanks so much! 

Rohit Shankar: Take care, everyone! 

Sunderland People First: (Lisa) Stay safe. Lovely to see you.

End of recording