All Things Autism - Kirsten Giles, MedicAlert 230522.mp3 ========================================= Speaker 3 00:00 - 00:12 Hello this is Anna Kennedy and we're talking all things autism and what a busy week it has been. Oh and yesterday was such a lovely day. Two lovely gentlemen walked 83 miles from the charity. Can you believe it? Speaker 3 00:12 - 00:32 83 miles. I know they had blisters because I was following them the whole journey and I've also been following them when they've been doing their training. So one of the chaps is called Godwin Batista, who's a really experienced walker, does lots of walks with various different charities. But Richard, this was the longest walk that he's ever done. Speaker 3 00:32 - 01:04 And he said he really felt it. But I'm so proud of them both. Richard has a son on the spectrum and Godwin doesn't but he said he learned so much from Richard over the three days that they were walking so we had a welcoming committee for them near Watford Football Club and then we walked the last mile or so with them ending up at Watford Football Club because there was a match on and guess what they were they actually said it was one of their ticks off the bucket list if I remember correctly because Luther Blissett one of their idols was there we had the mayor of Watford we Speaker 3 01:04 - 01:35 had one of the MPs from Watford we had their families were there lots of people it was just so lovely we had photographs taken as well out the front so they said it's going to hold a special memory in their life and they raised over £2,000 for the charity so that is totally amazing So if you want to check it out, the information will be on the charity website and you'll see photographs. I'm just so proud of them both and we are so grateful. And I had a charity champion Jo there, who was coordinating all their efforts. Speaker 3 01:35 - 02:04 And their daughter Lucy is one of my young volunteers. So she was going around with a bucket as well saying, oh, can you raise some money for Anna Kennedy online? So she was doing a really good job. Just to remind you, the Autism Expo will be happening at the end of June, so our speakers are Carrie Grant, Brian Bird who's an autistic adult, Gemma Long is another autistic adult and Alfonso works with young performers who are autistic and as you know Carrie Grant and David Speaker 3 02:04 - 02:38 Grant are well known in the media and they also have family with various different disabilities, children with autism, and lots of overlapping conditions. So they are going to be at the expo, it's £10 for the day. We have clinics as well where you can have information on whatever it is that you're looking for. So it could be about behaviour management, it could be legal, it could be about speech and language, it could be that you want some tips on how to help your child or adult relax on well-being because as you know well-being is key and looking after our mental health. Speaker 3 02:39 - 03:06 And also now Autism's Got Talent is closed, no more entries please. We have been inundated from all over the country and overseas. So we now have the tough choice, we have to choose 20 performers that will be travelling down to London in October and performing on the stage. So we've been going there now for 11 years and we've had so many wonderful performers It's somewhere where you have to be to really experience what I'm talking about. Speaker 3 03:06 - 03:32 So that will be happening in October at the Mermaid Theatre, Blackfriars. I've received a book from Christopher Hoggins and it's called The Illustrated Artist and At 50 years old, he discovered he was autistic. Looking back at his life, so much of it suddenly makes sense. Being an artist, he decided to illustrate his past to try and understand his previous struggles and the lack of knowledge about himself that it had caused. Speaker 3 03:32 - 04:05 This book contains over 60 paintings and accompanying writings documenting the life of an undiagnosed autistic person. And now not knowing that one simple fact about myself, what he's saying has affected his life. It's just such a lovely book and the illustrations are amazing so if you're interested please contact the charity website and we can advise you where to buy this beautiful book. Also, just to remind you about the autism passport, which, as you know, now has been translated into Ukrainian. Speaker 3 04:06 - 04:37 This passport will help you understand autism and how to make adjustments for me. So there's lots of pages on here where you can put your name, your address, date of birth. how autism affects you, the type of support that you need, the characteristics of your autism, things that help you or might affect you and your ability to communicate and the stress reducing methods that help you and to support you. So we worked alongside Autism Anglia, of which I am a patron, and we sponsored this particular booklet. Speaker 3 04:37 - 04:56 And as I say, it's now been translated and been sent over to Ukraine. So if you're interested, again, all of this information is on the Autism Anglia website. So it's autismanglia.org.uk. Just to remind you, it's autismanglia.org.uk. Speaker 3 04:57 - 05:20 And one last thing, support for parent carers. So if you're feeling exhausted as we know or alone, support is at hand. Parentsonline.co.uk offer emotional support via confidential messaging with fully trained volunteers who also have lived experience of caring. Contact your local carers association which is through the carers trust which is carers.org. Speaker 3 05:21 - 05:57 The charity has a network of local services providing support to carers and a grants program that offers a one-off payment. So what's coming up very very soon is Carers Week and that will be happening on the 6th to the 12th of June. So if you want any further information or support on resources please contact Parents Online or as I say at carers.org and if you want to talk to us at the charity just to remind you it's www.annakennedyonline.com. Lots of information on the charity website And we have our resources page, which is constantly being updated. Speaker 3 05:58 - 06:16 And then we have our latest news page again, which is constantly being updated. And if you want to subscribe to the charity, it's free. Just click on the link that's on the charity website and every quarter you will receive a free newsletter. So today my guest is Kirsten Giles. Speaker 3 06:16 - 06:48 She was appointed as a MedicAlert CEO in February 2017 after holding senior roles in management consultancy, asset finance and telecommunication industries. Kirsten leveraged her 27 year experience in the private sector to take over the helm at MedicAlert after being drawn to an organisation where the primary focus is to help people within society who are medically vulnerable rather than a company solely focused on profits. So welcome, Kirsten. Hi. Speaker 3 06:48 - 06:58 Thanks, Anna. Lovely to be with you. Oh, thank you for joining me today. So before we talk about medical, before we talk about autism, who is Kirsten Chan? Speaker 2 07:00 - 07:36 Well, having heard how long my career is, it's made me feel very old. I am a 58-year-old woman who spent most of her life working in profit-centered businesses and moved, as you said, in 2017. A bit of a crossroads in my life, a decision to make what to do next. And working for a charity like Medicola is an extraordinary opportunity to to treat money in a different way. Speaker 2 07:36 - 07:51 It becomes a resource, not an end game. So I started my career, I went to Warwick Business School in the dark ages. What were your aspirations when you were young? What did you want to be? Speaker 2 07:51 - 08:03 I wanted to be a business person. I always wanted to be a business person. I studied what was then called management science, which is a very grand term when I was at university. And I went straight into IBM. Speaker 2 08:04 - 08:40 which is still an amazing employer, was very well trained by them in a number of different things and finished up in their management consulting arm which was relatively new at the time and spent the majority of my career there, very much enjoyed helping organisations to both take opportunities and solve problems and I think that's kind of the way my brain works, it's it's very oriented to trying to make things better. I've seemed to have spent my whole life looking at things and thinking, how can we do that a bit better? How can we help people to get more of what they need out of this? Speaker 2 08:41 - 08:49 So yeah, I think that's probably who I am. I'm a problem solver at heart, I think. And do you live in Leith and Bussard? Is that right? Speaker 2 08:49 - 09:08 And have you always lived there? We live in North Bucks, relatively rural. which is nice and mostly I've lived in the country, seem to have managed not to live in in a town or a city for most of my life, so yeah very used to farms and farmers and wellies and mud. Speaker 3 09:11 - 09:41 Oh I'm not sure if I could live in the countryside, I find it really beautiful and I love to go there but I think because of, maybe it's because of my youngest son Angelo, I have this fear, as it were. Maybe it's because he got lost a couple of times when he was younger and it was in rural areas and it was just a nightmare, obviously, to try and find him. But I always have this worry about that if he did get lost, I would never be able to find him and then some harm might come to him. And it's just, that's always at the back of my mind. Speaker 3 09:41 - 09:57 I suppose it's because I've always lived near the town. I suppose where I live I'm quite lucky really because I can get to the countryside really really quickly and I live by all the motorways so I can get to wherever it is that I want to like fairly quickly so I think I've sort of got the best of all worlds really. Speaker 2 09:57 - 10:16 I think it does sound like that I mean one of the things we find is we are you know you have to drive everywhere which which is you know can be problematic especially with when my sons were teenagers you know you're just constantly being taxi service which is which is uh yeah You kind of get used to it but it's nice when it finishes. Speaker 3 10:16 - 10:24 I was going to say, that lockdown then, was it tough for you then being in rural? Was it tough for you? Speaker 2 10:24 - 11:09 No, well personally I didn't, I went into the office every day because I had we manufacture, we'll talk a little bit about medical in a minute, but we manufacture our own IDs, they're all made to order, engraved and put together on site, so I had staff who were, who had to be in the office otherwise we wouldn't have been able to continue to operate, so I went into the office all the way through lockdown. Which didn't impact when you were told? Not really, the roads were much clearer, much less traffic and there was a certain solidarity actually amongst people who were on the roads, you know, because I think it was mostly people who had to be, and yeah, it was a small group of us in the office, and Speaker 2 11:09 - 11:37 we, yeah, we managed well, you know, we didn't have any, we managed to not have any impact on the people we support, the members of our charity, we continue to manufacture, we continue to operate, we continue to man the phones, there were quite a few staff who were home-based, so those that could work at home did, and those that had to be in the office were in the office and I chose to go in really just to make sure I could you know support everybody. Speaker 3 11:37 - 11:46 Okay so we've just touched on medical alert so what exactly is medical alert and why is it important? Speaker 2 11:46 - 12:44 Well the first thing I think it's probably worth explaining is what is a medical ID service because some people are not familiar with them and it's really simple it's it's wearing a piece of medical ID jewelry usually on your wrist or around your neck and the reason for that is because those are your pulse points so in an emergency a medical professional would check your pulse but one of the first things they do when they're sort of just seeing seeing what you know like an immediate triage and so they would see the ID and and on the back of the ID is a few medical details which are know would be really important in an emergency but also a unique membership number and a 24-7 emergency number which can be called from anywhere in the world and we have a translation service so if you 100 different languages and dialects so we've not yet had a call from somebody who we couldn't translate. Speaker 2 12:46 - 13:31 So when was it founded was it a long time ago? It was a long time ago so it was started in America in 1956 came to the UK, was brought to the UK by the Lions Club International in 1964, so this year is our 58th anniversary in the UK. So yeah, we're a very long-standing charity, been supporting people for a long time, and So you wear the ID, but behind the ID is an online record which has many more details in, including more details about your conditions, any medication that you're on, any allergies you have, any history that's relevant. Speaker 2 13:32 - 14:15 It can store documents as well, so if there are certain documents that are important to you, and they can be anything from a clinical report, So some of our older members have advanced directives on there or any particular more detailed care requirements that would be sent to the hospital if there was an emergency. So those details are all on there along with your next of kin or your emergency contact details of people who you who would need to be contacted if anything happens to you so those are all available to the paramedic or the nurse or doctor who's who's treating you. Speaker 3 14:16 - 14:34 So are all first response teams if you like first in you know what it is that I suppose that they need to do if they find someone say for example they're unwell and they've got one of these medical alerts badges or neck. What form do they take? Speaker 2 14:34 - 15:18 Do they wear a wristwatch? There's an enormous selection of them. We've recognised over time it's really important that people like what they wear because they wear it all the time so we have a really large selection and hopefully there's something for everyone and for various different sort of times occasions as well so we have know some very robust sort of um waterproof uh they're all waterproof but but washing machine safe if you like you know so something you might wear to do gardening or sports or whatever yeah and you can just yeah you can just pop it in in the washing machine if it's or you Speaker 2 15:18 - 15:37 know in a bowl of soapy water or whatever. So yeah, most of them are bracelets. I would say most people wear bracelets, but for some people they don't want to wear. And there's some that look like watches with watch straps on, there's some on chains, there's some on velcro straps for sports, so there's a really wide variety. Speaker 2 15:37 - 16:34 And we also have some really pretty ones because us ladies sometimes like to have a change of jewellery and if you need to wear an ID, all the time then having a selection which means you can have one with some you know a nice special fancy one that you can wear with a pretty dress or something if you have to go out in the evening is a nice thing to have so yeah some of our members have I mean there are there are some who have you know more than 10 and I think if you've been with us a long time and you want to get yourself a new bracelet then you get another medical ID you know so what if you've got a child that's got sensory issues and who finds it difficult to wear like a watch or a bracelet or you know are they like a bit of a like a fiddler yeah so um we do we do have necklaces so so it might be that somebody was more comfortable with a necklace a bit like a saint christopher sort of a disc a round disc so that might work um Speaker 2 16:35 - 17:03 we have um as i said we've got velcro ones which they may feel more comfortable in or There's some that have various different straps from leather to silicon to whatever. We also have a bracelet which was specifically designed for, as you call them, fiddlers. We call them mini Houdini's because they seem to be able to get out of all of the catches that we have. And we had one in particular, one of a young boy whose mum worked with us. Speaker 2 17:03 - 17:16 She kept coming back just going, no, he's managed to leave that one on the floor with all of his toys as well. So we've got one, it's called the forget me not. And it's pretty hard to put on yourself. So somebody else would put it on you. Speaker 2 17:16 - 17:44 And I think I think it's not had anyone come back and say their child's managed to get out of it. So it's been really good for children who have a tendency to, you know, lose those sorts of things because they fiddle with the catches. But interestingly, we've also found it really gone well with older people who might have dementia or Alzheimer's. who have a tendency to perhaps take it off and then not necessarily remember where they've put it or forget to put it on, for example. Speaker 2 17:44 - 17:57 So most of our bracelets are designed so you can put them on and keep them on and you can wear them, you know, certainly all the stainless steel ones, you can wear them in the shower, in the bath, yeah, in the swimming pool. Speaker 3 17:57 - 18:10 Okay, so what's the process, for example, so say for example, right, I say I like the sound of that, so how do I, about getting one if you like? Getting one. And what's involved? Speaker 2 18:10 - 19:04 Yeah, so the best thing to do if you're interested is go to our website which is medicalert.org, that's O-R-G dot UK, and that has a lot of explanation there. It should have some, well there is specific areas about all the illness, main illness groups, so you can look on your area. So for example we have an autism page and a case study of a young boy called Jamie who who is on the spectrum and have a look round and if you like the look of it you think it will suit you then you just press join now and that starts the process which is online you put some information in and it walks you through the whole process and if you have any problems during that we have a you know our member support team are fantastic on the end of a phone can talk you through whatever Speaker 2 19:04 - 19:48 you need, what questions you have, but most people manage it themselves relatively straightforwardly. You put in your details in terms of all your personal details, then your conditions, your medication, any documents can be uploaded, choose an ID and then you get to the end and we do charge for people to join us and the main reason for that Anna is we are a charity but We want to support as many people as possible. And although we are so lucky to get donations from our members and from legacies and from non-members who want to support us, if we only relied on those, we would be able to support a really small number of people. Speaker 2 19:48 - 20:21 So we do make a membership. There's a membership fee and you buy your ID, which obviously we have costs associated with making and engraving those. And those are mostly run at cost. but we have this sort of approach which says if you can pay then we ask you to pay because that then allows us to support people that can't so we run goodwill programs and we have projects that are sponsored by other organizations of varying sorts so I wouldn't Speaker 2 20:22 - 20:40 like to think that anybody who could benefit from this service doesn't have access to it. So if you can afford to pay, please do, because that means we can use our funds to support people that can't. And if you're lucky enough to be able to donate, then that's really great, because that, again, helps us to support more people. Speaker 3 20:40 - 20:49 OK, you touched upon Jamie, and I actually saw this on the website. So I'm just going to read this off to give people an idea. So Jamie's eight. He's got a peanut allergy. Speaker 3 20:49 - 21:06 He's also autistic and nonverbal. He's wearing the Forget Me Not bracelet and a sports band. And he loves swimming and has won a championship. So the medical bracelet has given us a reassurance that we needed the peace of mind that will speak for Jeremy and will keep him healthy and safe. Speaker 3 21:06 - 21:17 That's from his parents. He spoke to Anne, mother to Jeremy, who's autistic. Jeremy's eight, was diagnosed with autism spectrum condition when he was three. He's also non-verbal. Speaker 3 21:17 - 21:30 Therefore, his parents' anxiety grew when he started school. That's when they decided for Jamie to join Medical X. He was very happy to wear his colourful sports band and would never want to take it off. It was like a safety net for us parents. Speaker 3 21:30 - 21:36 When he started school, our worries grew significantly. Will he be safe? Will he like it at school? Will he be able to pay attention in class? Speaker 3 21:36 - 21:54 Will he make friends? Billions of questions haunted us for months. And surprisingly, Jamie was the one who gave us the confidence that he would be just fine on his own without me holding his hand all the time. His peanut allergy has always been worrying as well as he was not able to speak and explain this to anyone. Speaker 3 21:54 - 22:23 Since school started, I wasn't able to be with him to make sure any risk was avoided. Teachers reassured us, everybody at school wanted us to trust them with Jamie's safety. That's one of the most difficult things to do for a parent and relate to that, especially if your child has special educational needs and is not able to communicate. His medical bracelet has given us that reassurance that we needed, that peace of mind that if necessary, it will speak for Jamie and it will help keep him safe. Speaker 3 22:23 - 22:37 He loves sport. He's always wanted to join his friends after school club. Of course, we were worried, but at the same time, we didn't want him to miss out on all those activities that his peers could do. With his medical work, he felt he was invincible, and this helped us feel that way too. Speaker 3 22:37 - 22:54 He's now a great swimmer and is always playing football with the school team. He's very proud of his medals. He's won a championship last year and has several other awards. I'm so grateful for Jamie's special, and I hope you'll always know that he feels we feel and he feels happy and proud of himself. Speaker 3 22:54 - 23:21 That's lovely. As a parent as well of an adult that has minimal verbal skills, it's always at the back of your mind. vulnerable, he's not going to be able to tell you if he's in pain or anything. Angelo's motivated as a food, so he can say things like, I want cake, I want a drink, especially because I have to hide it around the house. Speaker 3 23:27 - 23:34 So what sort of costs are involved? So if somebody was interested, could you give us just a rough estimate? Speaker 2 23:34 - 24:09 Of course, yes, yes. So the bracelets or the IDs start at I think the most popular which is our classic stainless steel is £24.99 I think something like that and then the annual membership is so if you sign up for direct debit it's £29.50 which is less than a cup of coffee a month is what we always say. and if you if you don't do direct debits a little bit more I think it's 32 pounds a year if it's not direct debit just because we have costs associated with processing those payments. Speaker 2 24:09 - 24:29 Yeah and what if they break can you get them fixed? The bracelets? Yeah. Yes so we we also have a um so that they're all warrantied for a period sustain most of stainless steel is is 12 months we also have we have gold and silver again 12 months some of the um the the more fashion items are slightly shorter than that Speaker 2 24:29 - 25:40 the beads and things but but yeah we will fix it and even if it's outside warranty we can usually fix it as I said we we do um put them together ourselves so we've got the facility to fix them and people send them back to us also if if any conditions change which sometimes happens then we can just replace the the ID portion of it and keep the chain the same so that's obviously a little bit cheaper so we do that for people with the disk exchange service so that's quite good. The other thing I wanted to just mention you very kindly looked at Jamie's case study is I think it's a really good so we've talked a lot about you know the ID keeping people safe and it's really really important that that happens but fortunately it's not needed very often so the biggest benefit of it you know and this this is reported in in feedback we get from our members is this sense of safety that it provides peace of mind, a security blanket type feel, both to the people who wear them, children and adults, because it's Speaker 2 25:40 - 26:16 there, they know that they would be okay if anything happened, but also, and really importantly, to the wider family and people that care for them. Because, you know, anyone with a medical condition and, you know, obviously, especially anybody that's been diagnosed on the autism spectrum, there is just that slight concern, fear that if they're by themselves, what might happen? Will they be okay? And yet, in all cases, I think the motivation is to increase their independence, because that's good for everybody, and good for their confidence. Speaker 2 26:16 - 26:42 And so I think most of what we provide, most of the benefit that members tell us about, is it just it makes me feel safe, it makes my mum know I'm safe, it makes my husband know I'm safe, my wife, my daughter, and it means I can go and do some of the things I really enjoy without worrying, which is... Which of the biggest users would you say are children or adults? Sorry, ask the question again Anna, I missed that. Speaker 2 26:42 - 26:57 That's okay, which would you say that use your service the most, children or adults? So across the board, it's mostly adults. But that's probably because if you remember, we have we cover all illnesses. Yeah. Speaker 2 26:58 - 27:28 So with regard to people on the autistic spectrum, I'd say it's probably I haven't got the data in front of me, but I think it's, you know, it's probably a reasonable spread, maybe slightly more children. Yeah. You know, partly because I think it is parents do quite rightly worry and they want to make sure that, you know, Jamie's a really good example as well because his parents really wanted him to be able to join in with all of the activities that were going on at school. Speaker 2 27:28 - 27:57 And I think your instinct is sometimes to protect and to say no to those things just because there might be some concern of the danger. And where's all the information stored that you have from each person? So it's all online, it's very secure. Because of the kind of data that we store, we're the top level of security in terms of GDPR legislation. Speaker 2 27:57 - 28:09 So it's very, very secure and it's available when it's needed and only when it's needed. And at that point, we make it available to somebody who's supporting somebody in an emergency. Speaker 3 28:09 - 28:16 So how does that work? So say for example a policeman finds somebody that's in distress and they're wearing one of those. What's the process? How does it work? Speaker 2 28:17 - 28:36 Well they would look at the back of the ID so there would be some immediate information on the back of the ID and they come in. And they would know what to do with that? Yes, yeah absolutely. And then they would call our 24 7 emergency line which again is on the back of the ID and then quote the unique membership number for that individual again on the back of the ID. Speaker 2 28:37 - 28:56 So we then do some, ask them some questions to verify who they are. We would take their badge number, make sure that, you know, that they were with the person. And then we provide them verbally over the phone with anything that we can that would support them in the emergency situation. And we can also email more details. Speaker 2 28:56 - 29:38 So we occasionally, people go into hospital and somebody in the hospital will call us have been told that sometimes they can get our information more quickly than they can find your NHS record. Now, obviously, that's not the case everywhere, but our response is very quick. And doctors, the feedback we've had from doctors in emergency rooms and ERs and A&Es, is that actually they really like the fact that information can be provided to them over the phone. They haven't got to go and look on a computer for something because they can have a phone on a speakerphone while they're treating the patient and the information will be relayed to them while they're there. Speaker 2 29:41 - 29:53 So yeah, that's how it would work in an emergency. um it's you know as as much as available and as you know as quickly as possible in whatever format is appropriate given you know whoever's calling us. Speaker 3 29:53 - 30:22 So can you without giving any names give me a couple of scenarios so say one for a child if obviously because it's all about autumn if you've got one about autumn that would be great um it doesn't matter and then the one for an adult and how does it I'm interested because we don't tend to talk much about older adults with autism and I don't know if you have any older adults with autism or even someone with dementia. So is it possible you could give us just a couple of scenarios just for people listening? Speaker 2 30:23 - 30:48 Of course. So I'm going to use hypotheticals here because I think it's There are lots of examples on our website if you want to go and read about them. Remind everyone of the website again. It's medical alert, which is m-e-d-i-c-a-l-e-r-t dot org, o-r-g dot u-k. Speaker 2 30:49 - 31:12 So yes, there's lots of examples of how the services benefited people. But let's say there was a child who had but it was diagnosed on the autism spectrum who, for whatever reason, had wandered off and was in a dangerous situation of some sort. They might be frightened. There might be a lot of noise. Speaker 2 31:12 - 31:34 They could be hurt. and they may have overlapping conditions that have affected them. Allergies of some sort to an environmental factor or to, you know, perhaps some food or something they've eaten, or perhaps more importantly, they might have an allergy to medication. So if they're in an emergency situation, they've got an allergy to medication. Speaker 2 31:35 - 32:14 So medical professionals, paramedics are taught to, you know, first thing they do is they assess the situation, they call it triage, and they would spot an ID, on a wrist or a necklace or perhaps some kind of indicator somewhere else on the child's purse and we'll talk a little bit more about some of the other things you can wear and have that help to indicate. So on the back of an ID it could say, you know, it says whatever you want it to say, so we don't tell you what goes on the back of that ID. Okay, I was going to ask you, do you tell people what to write or does it have to come from the individual? Speaker 2 32:14 - 33:06 No, it comes from the individual, but we will support and assist with that. So one of the things that's really important about Medical Alert is that we employ registered nurses and every single the engraving on every single ID and the record that we keep for every single person has been checked by a nurse when it when the record was put on the system and then if anything changes it goes back via a nurse again and the nurses they're doing a number of things they're checking for completeness so they'll look at you know here are the conditions I'm expecting to see a certain medication I'm not seeing it or I'm seeing a certain medication and I'm not seeing the condition on the list They will also look at what the person has requested to have engraved on the back of the ID and the check they're doing there is to say are these the most important things in an emergency Speaker 2 33:06 - 34:06 because when you're unwell yourself you don't always know what would be most critical in an emergency so if they feel that something's been left off there that's more important than something that's on there or something else should be added then they will call somebody and say we'd really like to talk to you about this we would recommend that so we never tell people what we would recommend and then they you know most of the time people say thank you very much and they take the recommendation we change the engraving and then we make the ID so you know whatever language is on the back of the ID is something that you as the member have had involvement in and has been checked by a medical professional. Okay, so back to our scenario, the paramedic would see this on the back of the ID and register that the child was on the autistic spectrum and then probably change the communication style accordingly, may recognise that the reason the child is non-verbal may not be because they're, you Speaker 2 34:06 - 34:50 know, may not be associated with an injury, it may be to do with that, to do with the, you know, the diagnosis and so they would then be able to behave differently, but they can also call the emergency line and find out if there's any more details, you know, and specifically, you know, anything they need to know immediately would be on the bracelet. So if there was an allergy to penicillin, say, you know, really vital to know in an emergency, so they would know that immediately. And then once the situation stabilised, then they might they might, they would usually take immediate action then subsequently call the number and get some more details. Speaker 2 34:51 - 35:22 But also if that child was not, was alone and had wandered off perhaps, or nobody really knew why they were alone, then obviously all the emergency contact details are also available on the end of a telephone. So the parent or carer would be contacted and then they would know. And that's another reason why the parents and carers of our members feel so much peace of mind because they know that they would be contacted if anything happened. Okay oh that's really useful to know thank you. Speaker 3 35:23 - 35:47 No not at all. Okay um can I also ask about um I think this is a program about mental health and well-being and also because of everything that's been going on in the last few years and we're always seeing stuff about mental health well-being, what do you do for your own well-being and what do you do for time out? And I'm always interested as well to find out what people do for time out, you know, what is it that helps you relax? Speaker 3 35:48 - 35:57 And it also gives ideas to people, sometimes they think, oh I never thought of that, I never thought of that. So what's your feelings on it? Speaker 2 35:57 - 36:21 What's my downtime? Well, I try and do a bit of exercise. So I've got, I used to run, but because we live in the country, I was constantly jumping into ditches when cars came past and then find myself out running in the ice and various other slightly dangerous times. So I got a rowing machine. Speaker 2 36:21 - 36:39 So I row a bit, which is very nice. And so I try and do that a few times a week. One of the, I was a little bit embarrassed to admit this, but during lockdown, one of the things I learned to do, which I absolutely love, so I've always knitted. My grandma taught me how to knit. Speaker 2 36:40 - 36:55 For whatever reason, I started knitting socks. So my poor family have now all got, they all, last Christmas, everybody was going, oh, I wonder what this is, mum. Oh, another pair of socks. So they're, yeah, they're great fun. Speaker 2 36:55 - 37:12 They're not very big, so they don't take a very long time. They're a bit of a puzzle because you sort of have to work out the sizing for each one as you make it. But yeah, I really, really enjoy that. You have to knit it with like three needles or something? Speaker 2 37:12 - 37:26 Well, there's several ways you can do it. So you usually need more than three, so four probably, or more. So you can do it like that on little knitting pins, or you can do it on a circular needle. Yeah. Speaker 2 37:27 - 37:54 I think anyone that's knitted, everyone I know who has admitted to me that they've knitted socks, oh aren't they fun, they're addictive aren't they? And they are, they're like, I don't even know how to describe them, but for knitters they're sort of, there's quite a lot of different stitches in a sock, so it's sort of like doing, you know, sometimes when you knit something big it can get a bit boring because you're just doing the same thing over and over again. Socks are have to be a bit more concentrated and you don't do anything for very long because they're so small. Speaker 3 37:55 - 38:21 Okay because my mum used to always knit when I was a child and I also remember when we were little gosh she used to knit these blooming woolen vests and they were so itchy. I remember they were like these cream woolen vests I used to think oh god not again and then also she had a thing about um Well, it was Indian thing then as well, I can show my age here, but you know, loop, the loop, the loops, cardigan, like loopy cardigans. Speaker 2 38:21 - 38:25 Oh, yes. Yeah. Lots of loopy cardigans. Speaker 3 38:26 - 38:35 Oh, gosh. Yeah. So she was good and cable jump. Now, I did used to like my cable jumpers and they were nice and warm for the winter. Speaker 2 38:35 - 38:48 Yeah, I think I think once you start knitting, I mean, you either love it or you hate it. But if you like it, then the your family end up going, oh, another whatever it is. Thanks, Mum. You know what I love? Speaker 3 38:48 - 38:54 Those postbox toppers. I absolutely love those. Have you ever tried one of them? Speaker 2 38:54 - 38:55 No. Speaker 3 38:56 - 39:11 So basically what they do is, it's like they cover the top of a red pillar box. They create scenes and if it's a Christmas, they'll do a Christmas scene. I've seen a few now to do with the Jubilee that's happening, so I was just wondering if you'd ever tried anything like that? Speaker 2 39:11 - 39:30 I haven't tried one of those, but I love, I can't remember, there's a wonderful website and I can't remember what it's called, with people have knitted the most extraordinary things. I know. They cover statues with knitting or yes, lampposts. And yes, I think I've seen the sort of pillar box ones as well. Speaker 3 39:30 - 39:32 Yeah, near where I live. Speaker 2 39:32 - 39:36 Knit bombing, is it called or something like that? How is it? Oh, I don't know. I don't know. Speaker 2 39:36 - 39:39 There's some amazing, amazing things that people have done. Speaker 3 39:40 - 39:45 I think the highlight of knitting was, wasn't it Tom Daley knitting cardigans? Speaker 1 39:46 - 39:46 Yes. Speaker 2 39:46 - 40:17 He's pretty good. Yeah, no, I think it's a lot of people have taken up, it's very big, I think there's a lot more knitters in Scandinavia, I've been looking at a lot of Scandinavian patterns which they do it in a slightly different way, but yeah, I think it's sort of becoming a little bit more, it's had a bit of a revival I think, you know, I think a few public people have admitted that they knit and that's encouraged people to have a go and perhaps having you know, maybe lockdown encouraged people with a bit more time on their hands to take up a new pursuit. Speaker 3 40:19 - 40:32 So we, I spoke as well just briefly now about mental health and obviously the importance of mental health. So I was just thinking as well, some of the members that you have, do they have mental health issues as well? And how do you deal with that? Speaker 2 40:33 - 41:08 Yeah, I think that, you know, I mean, some phenomenal, I mean, there's hardly any of us that escape our lives without having some mental health challenge at some point. And I think it's really so uplifting that more people are talking about it, because I think, you know, there was a time, certainly during my lifetime, when, you know, it was something that people were too embarrassed or ashamed to talk about. And that's just so sad. and knowing, you know, now that people talk about it, it's much more common for people to go, do you know what, I've had a problem with that too. Speaker 2 41:08 - 42:19 And I think one of the things about any kind of condition that anyone lives with, any illness or any diagnosis which makes life a little bit harder for them, is that it's almost inevitably going to go alongside some mental health challenges. I think a lot of our members can feel like they lose the ability to influence things themselves as much as they'd like to when you're very unwell and you're at the you're relying on being treated by doctors being told what to do and one of the things that's really interesting that people say to us is actually joining Medicola and wearing an ID was something that I could do for myself which made me It's almost like you're taking a little bit of power over your own life and doing something which you choose to do. And I think people find just the process of doing that, of making a positive decision to improve things themselves and then feeling good about it and wearing it can be really helpful. Speaker 2 42:19 - 43:19 we try so hard in the newsletters and the blogs and things that we write to try and help people to find ways to look, you know, look at things a bit differently, to think about, you know, maybe enjoying cooking, so we have, you know, recipes and things, we have, you know, people who understand how to how to look at life in a slightly different way, perhaps we'll, you know, do something to support members, and I think it's just constantly trying to help people not to feel so alone, not to feel too much of a victim mentality, you know, to feel that they can influence some things themselves, and taking a bit more activity, be that, you know, I always say, you know, for each person that's individual, one of our members went around the world in a boat and another one might walk to the shops by themselves. Speaker 2 43:20 - 43:56 You know, both equally valid because it depends on what the challenge is for you as an individual. What is it that would make your life feel richer, would connect you more? Because also social activity is so important. Feeling a sense of belonging, having an opportunity to talk to people, loneliness is is very sad and it can make you unwell and if you're not well it can it can it doesn't help so you know taking social activity feeling comfortable being out with a group of people Speaker 2 43:56 - 44:28 you may not necessarily know very well you know and that's another big benefit of wearing an ID is you don't have to explain because if anything happens they'll see it you don't have to say I'm diabetic or know i've been diagnosed on the autism spectrum because if anybody if there's a situation where somebody needs to know then they will know and it just might mean that people feel more relaxed about you know doing something they've not done before with a group of people they don't know that well maybe by themselves which can also be really good for them yeah Speaker 3 44:28 - 44:55 So I was actually looking at the bio that you sent me, and you can talk knowledgeably around quite a few topics. So I was just thinking that people might be listening in, that they might think, oh, I might like Kirsten to speak for us. So one of the topics is the challenges around caring for older family members and the importance of staying safe while maintaining independence. What sort of things can you share with that? Speaker 3 44:55 - 45:19 And I know At the moment, my husband's mum and that, they're obviously getting older now, and they're worried about getting older, and there's two sisters that have always lived together, and they both depend on each other. What are the challenges caring for all the family members? Speaker 2 45:21 - 45:45 In some ways, they're not dissimilar to caring for a child. You want to know that they're safe if they're out and about by themselves. One of the difficulties with people who live with dementia or Alzheimer's as a form of dementia is that a very large number of them will wander. At some point, they will wander. Speaker 2 45:45 - 46:30 And the fear of them wandering can be very worrying. and there's a lot of evidence that if somebody is wearing an ID they will get home many hours sooner because the person will be able to, the police men or whoever is helping them will be able to identify who they are, will be able to call somebody and somebody will be able to collect them. And the difference between five or six hours and half an hour in that situation for the person who is has wandered and doesn't know where they live and can't remember their own name and also their family who will who are frantic and desperate with worry as to where Speaker 2 46:30 - 47:12 they are and whether they're okay or not those you know that time period that we can save by them being able to you know be ID'd really quickly yes you know in those situations it's it's I can't imagine what it must be like. It must be terrifying, especially worse if the person is on medication, because if that has to be taken at regular intervals, sometimes they won't remember they're on it. They don't have it with them. and you know so if there's anyone in that situation it can you know and again it most of the time it won't happen but the knowledge that if it does yes they're going to be okay obviously we're all um everybody's working to try and keep people in their Speaker 2 47:12 - 47:51 homes for longer yeah and again that can be another um benefit to having to having an idea is that actually if you're in your home there are any number of different alarms and things that that can support you but if you're outside your home you know while you're living independently, that's when the ID comes in because, you know, that's with you wherever you go. And we, you know, we work regularly, talk regularly with charities that support people in trying to make sure that they have someone to talk to. So there's a wonderful charity called Silver Line. Speaker 2 47:52 - 48:04 It is so again a bit like Childline but for older people because and again coming back to being lonely just having somebody to have a chat with is can be really really beneficial. Speaker 3 48:06 - 48:12 It's just been highlighted now isn't it loneliness on mental health week that was the theme for mental health awareness week and month. Speaker 2 48:12 - 48:37 Yeah absolutely and it is I think it's got, I mean, it has obviously got worse during lockdown. A lot of people have felt much more isolated. I think the other thing that's happened during lockdown, which is really beneficial, is that people have used technology. So, you know, certainly my parents, you know, can now operate an iPad, whereas previously they wouldn't have known how to. Speaker 2 48:37 - 48:57 because then they can have a video chat with their children and their grandchildren, you know. And that's a great thing that people have become much more used to using technology to, you know, see a friendly face and have a chat. And it isn't the same as being there in person, but it's a lot, lot better than not speaking to anybody. And it's better than being on the phone as well. Speaker 2 48:58 - 49:34 It's that physical smile and nod and, you know. So, yeah, I think, you know, you're much more likely to suffer with ill health as you get older. And so, you know, at the number of our members, we have, you know, the sort of profile of our members is generally that sort of, you know, the number of people who are members beyond 35 is, you know, far outweighs those that are under 35. Which is sort of as you'd expect. Speaker 2 49:35 - 50:24 And unfortunately, you know, also the case that sometimes you have one condition or illness or diagnosis and that then leads to something else and it's that overlapping of conditions which I think can be particularly problematic for people who are unwell and therefore much more important that you know the details are known about but I think you know the focus on keeping people independent and confident, because one of the key things to independence is confidence, is feeling like you're going to be OK. Either, you know, with two older people or just one older person. And that goes to peace of mind and confidence. Speaker 2 50:24 - 51:21 And I think, you know, that's the other area where we we know that the service that Medical Let provides gives people that because they tell us. regularly use you know all sorts of lovely phrases like guardian angel and you know it's just it's a it's a comfort that they know that you're there in case anything happens for that the individual or for the person that's caring for them yeah absolutely and it yeah and that's you know yeah and and you know it's a kind of it's a sort of one thing leads to another because you have that confidence therefore you're more likely to go and you know join in with something locally or take some physical activity and that makes you feel a bit better you know in your in your body and in your mind and then the whole thing you just feel a bit more optimistic which means you know in many cases it can actually have a positive effect on symptoms as well because just generally everything's you know Speaker 2 51:21 - 51:39 you're just feeling a lot better about life and a bit more confident and a bit more involved and a bit less lonely and a bit more distracted you might even go to a club and learn how to knit socks you know There could be any number of opportunities to go and try something new. Speaker 3 51:40 - 51:58 Yeah, at the beginning I spoke about the book The Illustrated Autist by Christine Hoggis and I just wanted to read the page at the back that he's written. It's quite interesting. So, a world without autism. So, since discovering that I was autistic in March 2021, two questions have bothered me over and over again. Speaker 3 51:59 - 52:22 First being, how different would my life be if I'd have known that I was autistic earlier? And the second being, given the option, would you rather be new or typical? But the first question, it all comes down to causality. If you change anything in your life, you change everything that goes after and everything you've created beyond that point blinks out of existence. Speaker 3 52:23 - 52:36 In developed world terms, my life has been pretty hard. I've had more than my fair share of fear, misery, stress, related health problems. Would my life have been any easier for knowing that I had autism earlier? Yes, I would have changed. Speaker 3 52:37 - 52:46 Would I have changed anything? No. I would lose my friends that I love and love me for me. To lose all the art I've created and the thoughts and ideas I've had. Speaker 3 52:46 - 53:02 Mucking about with fate is a foolish pastime and one best avoided. As for the second question, what would my life be like without autism? What is it that makes me, me? Well, you consider the amount of inventions and creations laid at the feet of autistic people. Speaker 3 53:03 - 53:41 Just how miserable would the world be without them? all those precise people, all those original thinkers, all those people ahead of their time, all those people unable to follow the herd, without autism what would the world be? A lot duller, a lot of creative horror, and that's for sure. And that's Christopher who's written, just to remind you, he's 50, discovered he was autistic, it's called The Illustrated Autist by Christopher So Christopher lives by the Sussex cause, he has been a knitwear designer, a civil servant, a prop maker and is now a tutor and artist and a Speaker 3 53:41 - 54:02 writer and a professional teddy bear maker. He spends most of his time trying and failing to lead a very dull life. I'd like to thank Rebecca, Lisa, Suzanne, Annie, Christian, Frances, Mark, Emma and John for their support, sympathy and kind words during one of the hardest years of my life and also Sydney. for making me smile. Speaker 3 54:02 - 54:03 That's a nice book. Speaker 2 54:03 - 54:06 It sounds like an amazing book. Speaker 3 54:06 - 54:09 It is. It's full of illustrations. It's just so detailed. Speaker 2 54:11 - 54:32 I mean, creativity and autism. I mean, Einstein, James Joyce, Thomas Jefferson, Emily Dickinson, Michelangelo, Dan Aykroyd, Greta Thunberg. You know, the list is very, very long. people who've changed the world because they were creative and maybe they wouldn't have been creative. Speaker 2 54:32 - 54:48 They probably wouldn't have been creative if they hadn't, you know, had autism. Can you remember the first person you ever met who was autistic? One of my best friends is autistic. OK. Speaker 2 54:49 - 54:53 One of the cleverest people I know. Speaker 1 54:53 - 54:56 And how long have you been friends? Speaker 3 54:57 - 55:33 um 30 years wow so did they know they were autistic 30 years ago do you know i don't know okay that's something you need to find out yeah i do um and did they find lockdown difficult yes As I said before, I've spoken to families where some have said it was actually better for me. They didn't have to interact with more people or prepare. They didn't have to go to school. Speaker 3 55:33 - 55:41 They didn't have all that anxiety of going into school, where others just said, no, I prefer going in and interacting with people. Speaker 2 55:42 - 55:53 A lot of people, it's all different. So while that's amazing that you've been friends with someone for 30 years on the spectrum, You know, most of the time it never occurs to me. It's just part of who they are. Speaker 3 55:54 - 56:02 Yeah, that's it. And I just look at individuals as who they are. You know, to me it doesn't make any difference. No, I completely agree. Speaker 2 56:04 - 56:19 You know, all of us have parts of who we are. It's just another part, isn't it? And it makes you who you are. So, yeah, I think you can't not be, you know, you take away a part and you change the person. Speaker 3 56:20 - 56:43 Definitely. I just want to also remind people, because I'm an ambassador for Born Anxious, as is Angelo, it's a clothing label to help children and adults with autism. So Born Anxious is a homegrown clothing label set up by Kelly. It's a lovely lady, mother of Oscar, a lovely little boy, and he's an autistic child living in Herne Bay in Kent. Speaker 3 56:43 - 57:22 Born Anxious raises awareness of autism, invisible disabilities in two ways. It can be worn to inform or it can be worn in support. No inside labels as you know a lot of our children and adults hate the labels inside clothing. Planet friendly 100% organic combed cotton and if you place your very first order with born anxious you get a 10% discount so if you type in the code in the box born anxious you will automatically get a 10% discount so that's www.bornanxious.co.uk we've got some amazing t-shirts and Speaker 3 57:22 - 57:55 slogans and we've got our own charity ones as well so you want to check out our shop on www.annakennedyonline.co.uk As I say, we're always updating the latest news page. If you want to subscribe to the newsletter, again, that comes out every quarter and it's free. If you want to follow me on social media, it's at Anna Kennedy One on Twitter, at Anna Kennedy Online. which is Facebook and then at Anna Kennedy OBE, which is on Instagram. Speaker 3 57:55 - 58:03 And by the way, if people want to follow Medical Alert, where can they find you on social media? Speaker 2 58:03 - 58:21 Oh, that's a really good question to which I don't know the answer, and I should. I'm sure if you type in Medical Alert on Twitter, it'll pop up. yeah also the links will should be on the website is that right? They will be yes they absolutely are on the website I'm sorry Anna I should know that. Speaker 3 58:21 - 58:46 That's okay you know what you're not the first so many people I've spoken to they've said oh here we are I've got it here in front of me now it's www.medicaler.org.uk which is the website so yeah all the links are on there for if you want to follow them on twitter or Facebook or Instagram. So do you find social media, I've got a couple of minutes left, beneficial? Speaker 2 58:47 - 59:01 Yes, I think it is. It is beneficial. It's a good way of keeping people informed, but also of just, you know, sharing good news. Speaker 3 59:01 - 59:40 interesting things so yeah I think it's really good. Yeah I think it's good there's some negatives but there is outweighed by the positives you can share so much information sharing parents people again who are feeling isolated or do you want some tips and advice yeah no I think it's pretty good so and if people want to write an article for the charity website again just send us a message in the contact form and we will be happy to share your article. So thank you very much Kirsten and it's been interesting talking to you and I'm going to visualise you knitting socks. Speaker 2 59:40 - 59:43 It's been an absolute pleasure Anna, thank you so much for having me. Speaker 3 59:43 - 59:50 Oh, thank you. And thank you, everybody. Keep going. The sun's out and it's going to be summer soon. Speaker 3 59:50 - 59:51 Woo-hoo! Speaker 1 59:51 - 59:55 Yay! Take care, everyone. Bye. Bye.