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Healthcare and PDA: From Avoidance to Access
592 Plays14 days ago
In this episode, Rachel from the PDA Society is joined by Julia Daunt, a PDA adult and trainer with the PDA Society, to explore the realities of accessing healthcare for PDAers.
Julia shares her lived experience of navigating medical environments, highlighting how appointments, procedures and interactions with professionals can often feel overwhelming, unpredictable and highly demanding. The conversation explores why healthcare settings can trigger anxiety for PDAers, including loss of control, sensory challenges, unfamiliar environments and the expectation to comply quickly with instructions.
Rachel and Julia discuss how these experiences can lead to avoidance, delayed care or heightened distress, even when support is urgently needed. Julia reflects on the importance of understanding how demand sensitivity shows up in medical contexts, and why what might appear as resistance is often a response to feeling unsafe or overwhelmed.
Part 1 focuses on building understanding, offering insight into what healthcare feels like from a PDA perspective, and why compassionate, flexible approaches are essential for supporting access.
Key Themes
- The challenges PDAers face when accessing healthcare
- Anxiety, control and unpredictability in medical settings
- Sensory and environmental factors affecting appointments
- Why avoidance and resistance can occur
- Understanding healthcare through a PDA lens
- The importance of safety, autonomy and trust
Deep Diver Subscriber Episode
For those who would like to go further, Part 2, an exclusive “Deep Diver” subscriber episode, is available through our Training Hub.
You can access it here: https://training.pdasociety.org.uk/pda-podcasts/
Disclaimer
The views and opinions expressed by guest speakers in this podcast are their own and do not necessarily reflect those of the PDA Society. While we aim to provide balanced and inclusive discussions, individual experiences and perspectives may vary. The PDA Society is committed to using language and terminology that reflects the preferences of PDA and autistic people, but sometimes our guests may use language and terminology which differs. Appearance on our podcast is not an endorsement of an individual, and not all of our guests will align with our position on the issues discussed.
Further sources of support and information
- PDA Society Training Hub: https://training.pdasociety.org.uk/pda-podcasts/
- PDA Society Website: https://www.pdasociety.org.uk/
- PDA Society Training: https://www.pdasociety.org.uk/support-and-training/training/
- PDA Society Support Service: https://www.pdasociety.org.uk/support-and-training/support/
Recommended
Transcript
Introduction to PDA Society Podcast
00:00:02
Speaker
Hello and welcome to the PDA Society's podcast. We're here to chat about all things PDA to help you understand what people with this profile of autism are experiencing and how you can help.
00:00:13
Speaker
We'll be sharing research, professional expertise and the insights of people with lived experience to help you understand PDA and have more tools to make life easier. So whether you're a PDA yourself, family member, friend or professional trying to make a difference, welcome from everybody at the PDA Society. We hope you'll find this useful.
00:00:38
Speaker
Welcome to the PDA Society podcast, where we share lived experiences, practical insights to help families, professionals and PDA individuals themselves feel supported and understood.
Challenges in Healthcare Access for PDA
00:00:50
Speaker
My name is Rachel and I'm your host for today's episode. Today, we're exploring the topic of accessing healthcare care and the barrier that might present for PDA people.
00:01:01
Speaker
We'll look at what those barriers are, how they might be overcome and what healthcare care staff can do to help. So whether you're a PDA-er, a family member or a health professional, this podcast will give you some valuable first-hand insight.
00:01:15
Speaker
My guest today is Julia Daunt. So welcome, Julia. Would you like to introduce yourself? Hi everyone. um My name is Julia. I'm an adult PDA and um trainer with the PDA Society.
00:01:29
Speaker
And I'm, you know, was as Rachel said, I'm here today to talk about accessing health care um and what that looks like practically and what and professionals and family members can do to help um in those
Advocacy and Preparing for Medical Situations
00:01:45
Speaker
situations. And also how you can um advocate for yourself even when you're actually in that situation and in the moment.
00:01:54
Speaker
um Because unfortunately, you know, you can't plan to be ill. and So it's it's important to have things in place beforehand, but sometimes it's not possible.
00:02:06
Speaker
So, you you know, it's about what you can do in that moment to to advocate for your needs. So, yeah. That's great. OK, thanks, Julianne. We're going to certainly be digging into that a little bit more detail. um So first of all, I think, m what what kinds of barriers do PDAs at and um their families commonly face when trying to access medical care?
Barriers in Healthcare Appointments
00:02:29
Speaker
What are those barriers that prevent that medical care taking place?
00:02:34
Speaker
m It can even like be as simple as... the making the appointment process um because i remember you used to just ring up or walk into the gp practice and say mean i'll need to see a gp and i was given appointments there you know they'd say well you know um you know Dr Smith's got a gap this morning.
00:03:02
Speaker
um Come back in an hour and he'll see you. um and or you just ring up and just say, I we all need to see the GP. And you weren't interrogated as to why.
00:03:15
Speaker
and and i That can be quite overwhelming to have to go through it with somebody. m Particularly when you're not quite sure
00:03:25
Speaker
how you're going to do it yourself, you know, when you see the GP. So just that, that's difficult. um In some ways it's easier because now it doesn't have to be on the telephone.
00:03:37
Speaker
and Now you can make appointments online and things like that. So that does help. um But there's there's quite a lot in the NHS that is right, but there's also quite a lot that's wrong.
00:03:51
Speaker
even basic... so even the basic You know, making the appointment is tricky, um but doesn't need to be. Hmm.
00:04:02
Speaker
Yeah, so it see it states it's all of those it's those touch points, I suppose, isn't it? Of asking questions, putting you on the spot, and that then adds to, layers on like the anxiety that you've already got because you wouldn't be going to the GP if you were feeling well. So therefore, you know when you're seeking that medical support, you're not 100% yourself anyway, are you? Which therefore lowers tolerant in you know the tolerance of demands, doesn't it? Yeah, yeah and and if it's a more urgent thing, so if you're in A&E or something like that,
00:04:33
Speaker
you're asking for, say, somewhere quiet to sit. um But you're asking staff who are really stretched and really pushed and who, with all the will in the world, don't have time to cope with your reasonable adjustments because they're they're doing 101 things at once and it's all needed 10 minutes ago. it's...
00:04:57
Speaker
it's you know I sort of want to say you know I do have empathy for them, but when you're the person needing those reasonable adjustments, it's really hard. um But as I say, you can't plan for that because you can't plan that on Monday you're going to fall downstairs and break your leg.
Communication and Adjustments in Healthcare
00:05:16
Speaker
you know So that's why things like a hospital passport...
00:05:21
Speaker
are really important because that's in place before and ready um and there's also something um called a respect form as well um that can be quite good as well because that that basically says what treatment do you want if you're not able to say what you want right yeah so um like that's quite a good thing to have as well And for those that maybe haven't come across them before, do you want to just elaborate a little bit about what um um a hospital passport is?
00:05:54
Speaker
Yeah, you can you can download of a blank template for a hospital passport and you fill it out and it talks about what reasonable adjustments you might need going into a hospital, um whether that would be that you'd always need to have a chaperone with you or things like that, and whether you'd need a private room.
00:06:15
Speaker
um whether you need people to bring you food from home, um what your sensory needs are, and your preferred communication style. um So,
00:06:26
Speaker
um you know, do you like small talk? and and And nice things is like what are your interests? So that if staff are talking to you, they can almost sort of gear it around something that they know will bring you comfort.
00:06:43
Speaker
um And the respect form basically is you do it through your GP and it's it's if um you're not able to, for whatever reason, um give consent.
00:06:57
Speaker
and it's It's you saying what you'd want done. Yeah. Yeah. i mean yeah Yeah. And that's, you know, both of those, I can see how that would be really valuable when you're in those moments and you might not be able to, you know, if your anxiety is increasing, you might not be able to communicate what you want and what your needs are. But if it's all there and it's pre-planned, then you've got it written down, as you say, in that hospital passport, you know, giving staff some information about yourself, what you like, what you find more difficult, you know, the things that you're that you're into gives them an opportunity to create those conversations that, as you say, will help you lower your anxiety when you're, you know, your anxiety, you're in a situation then when your anxiety is already raised. So, thinking about... So, I was just going to say, the only downside to the hospital passport is it's really tempting to put everything in, but keep it as minimal as possible because we're asking those staff...
00:08:02
Speaker
in that situation to read something that, that, you know, that's, they need to read, but we need them to get the very basic yeah information. So if you're particularly triggered by lights, but noise isn't such a problem, then don't worry about putting the noise down. You know, you can, yeah you know, if there's something you can miss out, then do. Yeah. um Yeah.
00:08:27
Speaker
Because it's, that's the only downside to them is that it's, you know, another five or 10 minutes on their already busy schedule. You see what I mean? Yeah. And it is tempting. I remember the first time I filled mine out, I put everything on there and i was like, this is silly. They're not going to read this.
00:08:45
Speaker
So I did a much shorter version. um Yeah. It's the key points that they need to know that are things that will help you the most, isn't it? It's what are the what are those top reason adjustments that will help you the most? Yeah.
Sensory Challenges and Autonomy in Hospitals
00:08:57
Speaker
So,
00:08:58
Speaker
Why then healthcare settings in particular challenging for many and people and with a PDA profile and and why, you know, and therefore it will impact the support that they receive? What is it about healthcare settings? You've touched on a few, you know, the staff are busy and you mentioned in passing sensory, but what is it in particular then about healthcare care settings that are anxiety provoking?
00:09:25
Speaker
So for me at the minute, my biggest trigger is, um, the number of demands. Yeah. It is a very demand filled environment demands of me. Um, then there's the germs, then there's the noise, the lights, the smells, the sounds. Um,
00:09:47
Speaker
the atmosphere because it's not a cheerful place to be in like a and um there's a lot of sadness in there and i can feel it um there's a lot of worry you can feel um and i mean it's really not a nice place to relax and is it hospital um and it's the unknown of like how long will i be in here for um what will they do if this doesn't work? What's the next?
00:10:18
Speaker
There's too many sort of what ifs. um And it's just unpleasant to be on a ward with other people who are ill. Yeah. and yeah And you feel very vulnerable.
00:10:34
Speaker
Very isolated, i do anyway, even if I'm in a busy ward with loads of people around me and the pool's there, I still feel like I'm completely on my own. Yeah, because you haven't you also haven't got your the things that you keep around you on a day-to-day basis that keep you keep your anxiety down, your your home comfort, so to speak.
00:10:56
Speaker
But also just thinking about the bit that you said about that the demands. I mean, you know, you know what you know, I've spent time in hospital with my children, spent time in hospital myself. And there are a lot of demands, aren't there?
00:11:09
Speaker
And they're often quite regimented about things i mean which because they have to be. You know, you have to have your obs done at certain intervals. You have to have. medication taken at certain times um and therefore those demands i can see quite easily how those demands will just stack up yeah and they take control away from us as well so um like with medication they come around with it so when i'm in hospital i take my own right yeah so unless it's something they've prescribed since i've been there but all my day-to-day medication i will be in charge of taking that when i normally do
00:11:47
Speaker
um yeah and I've got a thing with them now where when they come in to do OBS, I don't like them to say, I'm going to do your OBS because I know why they're there.
00:12:01
Speaker
They come in the curtain, you know, with the with the machine. it's Well, it's obvious what you're going to do isn't it um So they don't communicate it now. they just We either chat about weather or television or whatever, or we don't say anything and they just do them.
00:12:18
Speaker
Because each time they say, or can I take your blood pressure? Can I take your temperature? You know, it's another demand because obviously it's demand to answer and give consent. so yeah So I've got in my reasonable adjustments, it basically says if I'm laying in the bed, take it as consent to do whatever.
00:12:38
Speaker
Yeah. So... Yeah. And it just then and then removes that demand for of yeah of the asking, doesn't it? Yeah. Which just helps helps with that engagement a bit more. And I think you mentioned about control. And I think, yeah yeah you know, we know that control is important for PDA individuals. And when you're in hospital, you will essentially it's there is heart very little that's in your control, isn't it?
00:13:00
Speaker
Yeah. And you've also got no control over your body. You know, your body's let you down because you're there for whatever reason. um And it's about allowing us to get back some control wherever that is. So if that's allowing us to take our medication from home, do it.
00:13:19
Speaker
You know, that's OK. If it's like me allowing me to unhook my oxygen and go outside and just I scoot around the car park, I'm not really doing anything. and But allowing me at that break, you know, that perhaps you wouldn't medically recommend, and you know, just it allows that break, you know, and if the patient is too ill to unhook the oxygen, then go with them, send a member of staff yeah with them, you know, there's ways around it. um
00:13:51
Speaker
And, you know, and keep contact with them. down to a minimum, you know, don't, yeah don't sort of pop your head around the curtain every five minutes going, you're right, you know, um because again, that's another demand.
00:14:09
Speaker
And most PDAs, if they want something, they will either go and get it themselves, send the person that's with them to go and get it, or ring the buzzer. Yeah. You know, we're not we're not daft. um Exactly.
00:14:24
Speaker
it's It's... We don't need sort of babying. no No. I know it's meant well, but it's it's another big demand when somebody, you know... And just... Yeah, for the staff, just be kind, but also...
00:14:44
Speaker
Be like a mate more than ah a nurse or a doctor or, you know, keep it light. Yeah. I mean, that that helps in all situations, doesn't it? Keeping it light. And we know, you know, as you said, mentioned earlier, we know that, you know, NH staff are very over, you know, ah overworked, overwhelmed themselves yeah by the workloads that they have.
00:15:04
Speaker
But in the, and I suppose in those moments, it might be easy to forget about what the individual needs are, but it is important, isn't it? To keep in, you know, that every patient's got those individual needs and,
00:15:18
Speaker
PDA individuals can't just comply just because you're busy, just quickly take your meds and then move on. It's it's it's not going to happen, isn't it? I know recently with with my PDA, I've got a 14 year old and he recently fractured his arm.
00:15:34
Speaker
So we managed to have to to help him get go for the x-ray and have the the cast put on. And by because he loves photographs, we said we're going get photograph of your bones, you know, and that for him, that was enough motivation to want to to be able to let himself comply. But of course, then, by the time you get home, the sling, I think, was thrown out the window on on a motorway within 24 hours because he had had enough of that, that had gone. And so we, you know, we thought, OK, we're not going to make a fuss. We'll just leave him without the sling. That's all right. We'll keep an eye.
00:16:08
Speaker
And then i think about 10 days later, he picked off the bit that goes around the bit between your thumb and your fingers. yeahli the The cast was just swinging around his wrist.
00:16:19
Speaker
So we, but it luckily with a couple of days later, we had the fracture clinic appointment of which then they put a soft cast on, so that webbing type, but that lasted five days. It was meant to be on three weeks, but it lasted five days and he just ripped the whole thing off. And we this is the i'm explaining this because it's an example of a good um interaction that we had with the hospital in that they were like, keep an eye on it because he was point like refusing to go back in for another one. Keep an eye on it. See if you need if you can get a bandage on it. Great. If you can't, don't worry. Just keep an eye on it. If it looks like he's not using it, then bring it back. If not.
00:16:57
Speaker
Just leave it. And thankfully, it it wasn't again. And that's it that that that's when staff were recognising, OK, for this particular individual, it's difficult. You know, it's difficult for him to be able to come back in and and access that health care.
00:17:12
Speaker
and they trusted us to be able to do the right thing for him. The thing, you know, he's using his art, you know, his wrist, he's doing everything he would normally do. He started lifting heavy things and it's not bothering him at all. So it's, you know, in those moments, as much as a horror it was for me to see him ripping it off, thinking, oh, God, what on earth we going to do now? But actually, the hospital were great like that. So,
00:17:38
Speaker
Sometimes, though, we know that and medical professionals might not have a great um understanding of PDA.
Misunderstandings and Stigma in Healthcare
00:17:47
Speaker
So in your experience, how do misunderstandings about PDA within the health care system have impacted the support and that you've received or other PDAs that you know have received?
00:18:01
Speaker
So very recently I've had sort of the the archaic approach to autism in general. and So thee the assumptions by A&E staff that that autism is linked um with intelligence or lack of.
00:18:19
Speaker
um So most recent examples is a nurse came in to take blood and put in a ah cannula and take blood. She didn't tell me what she was doing and I don't look when there's needles. So I didn't know. knew she was taking blood, but I didn't know she was putting a cannula in.
00:18:39
Speaker
So after I felt like she'd moved away, moved my arm. She then called me stupid um because I'd part pulled out the cannula. And I'm like, but I didn't know you were doing it. and So that made a cross. And she basically said to a staff member, someone else can deal with her. So I was like, oh, thanks. So there was that. And then in the same visit, the consultant came to talk to me, I thought.
00:19:07
Speaker
And he stood with his back to me, but talking to Paul for about 10 minutes they were talking. And I said, hello, I am here. And said yeah he said, well, I am talking to you. And I'm like, but you're not. um I asked um if he knew anything about PDA.
00:19:28
Speaker
And he said, you know, basically, we're all experts in it. Of course we do. And I sort of said to him, not the heart condition, because there is there is a PDA, a heart condition, um right yeah which is what he was on about.
00:19:41
Speaker
And um then he just looked confused. i was like, never mind. um and also i managed to finally say i've always wanted to say this which is that i'm autistic not stupid um yeah which i enjoyed saying that i felt good and so that was it that was in the one appointment um and i've had sort of paramedics say you know um can't you put it to one side for for a couple of days and have treatment And it's like, no, I can't just sort of lock it away in a box and be neurotypical for two days, have treatment and then go home and be autistic again. um
00:20:22
Speaker
It's those sort of outdated, almost humorous um sort of viewpoints on what it is, you know, and and another one isn't isn't your will to live stronger than aut autism.
00:20:38
Speaker
And I'm like, no. actually but thank you for pointing it out you know it's not it's not like sit here and i think right today i'm going to be so autistic that i can't do what i need to do yeah it's it's outdated and um At the time, it's not funny, obviously, when they do that. Another favorite of mine is if you say you're in pain, i um they bring around the smiley face pain chart where I get to rate my pain with emojis.
00:21:10
Speaker
So I love that one. um Yes. you know or they they talk to you almost as if your intelligence is you sort of into single digits.
00:21:25
Speaker
So I've got um blood clots and instead of just calling them blood clots, um so that you sort of understand the magnitude of what's wrong with you. Yeah. um They were referred to as teeny tiny blood clots, which takes away all fear, doesn't it? Yeah.
00:21:46
Speaker
And it's like, but where? And is it serious? You know, you know um I got an A in biology, so I don't need teeny tiny blood clots. I need... You don't need it sugar-coating, do you? No, I don't. Just give it me straight, isn't it? yeah Just tell me where and what type.
00:22:04
Speaker
Yeah. um It's not... You know, I'm not going to become so overwhelmed. Yeah. No.
00:22:14
Speaker
You know, you get used to it. um But you shouldn't have to. That's the point. No. No. You know, a friend's daughter of ours has been so horrified that my sort of treatment over the last few weeks that she's actually written a letter and that she's going to send to pals.
00:22:35
Speaker
And... um basically tell them how upset she is that it not only happens to children um but also adults because i think she thought like most children do that when you become an adult you know you don't get bullied anymore you don't get yeah you know all those things that children have to go through and and the horrible things i have to go through they assume don't know that adults don't have that yeah and it's like no we do unfortunately um It can still be there, can't it?
00:23:06
Speaker
um and if we If we think about the flip side of that then, the the converse, have you can you tell us about some great examples where you thats yeah that you've that the healthcare care staff have clearly really understood PDA?
Positive Interactions with Healthcare Staff
00:23:22
Speaker
Yeah, i I've had one or two paramedics who have had PDAs in their family. right so that's been very good. And... and I've also found that paramedics have quite a wicked sense of humour.
00:23:36
Speaker
um I think they need to have it doing what they do. I'm sure do, yeah. So they're quite entertaining to hang out with and um they can take a joke as well. um There have been one or two ah and e staff who have been just excellent. Yeah.
00:23:55
Speaker
one of whom has sort of become my favorite person. So I've joked and said, I'm not going into hospital unless she's working. um Because she doesn't, even before she knew about the autism, PDA, any of that, she didn't speak down to you.
00:24:11
Speaker
She wasn't patronizing with, sort of, they like to touch your arm, don't they, and tell you it's okay. Yeah. Like, get off.
00:24:21
Speaker
I'm not into all that. Postal space, yeah. Yeah, you know, go away. And so she didn't do any of that, what i would call silly nursing. Right. And, you know, I don't know everything about her, obviously, because there's a professional line.
00:24:36
Speaker
But we've spoken about holidays and work and family and um she vapes. So that's always a popular thing with me because it's like a sort of, well, it's breaking the rules, isn't it? The NHS, you're not allowed to do that and work for them. um okay You know, ah love that.
00:24:56
Speaker
i was I always ask them when they start sort of lecturing me about smoking, I say to them, do you smoke? And they're like, yes. And then I'm like, well, shut up then. Yeah. um So there have been one or two. There's a lovely doctor as well in the A&E who is just... He reminds me of a deer, if that makes sense. I know that sounds weird, but he's... Paul's laughing. He's very... He seems very delicate.
00:25:26
Speaker
Like... and shy the way a deer would be in in the woods. m Yeah. Like he doesn't, he clearly doesn't like people. right You know, he's not comfortable around them, but in a very sweet way.
00:25:41
Speaker
Okay. And you almost wonder why on earth are you a doctor and not a vet? Yeah. um It's sort of critical to the job really, isn't it? Yeah. he just But once he starts talking about medical,
00:25:53
Speaker
He comes into his own. Right. okay OK. So and again, he explains it in proper terms that, you know, that are clear. But it's um i just find him fascinating because I'm like, well, clearly you're you're, you know, neurodivergent. But where?
00:26:11
Speaker
and So yeah I shall puzzle him out. um um But yeah, he's he's been excellent. um And receptionists, again, saved the day most visits. Oh, brilliant.
00:26:25
Speaker
Because they are they are the glue to the NHS. and Because no one would know where anyone was or what they were doing without the receptionists. Yeah. And if you ever need help in hospital, find a receptionist.
00:26:40
Speaker
it's just yeah If you're lost or, you know, just find a receptionist. They know everything. Yeah. And you I remember we were speaking earlier and you were saying that your GP has been brilliant as well. Yeah.
00:26:56
Speaker
Yeah. Yeah. they And again, and his receptionists, and because they have literally spent hours on the phone trying to get in place for me reasonable adjustments.
00:27:07
Speaker
And it's it's a sort of twofold battle with reasonable adjustments, because obviously you've got to get somebody to listen to you to help you do it. But then you've also got to have the hospital then Yeah.
00:27:22
Speaker
the reasonable adjustments. Read it, yeah, exactly. and do it and Put it in place, yeah. So in sort of my experience recently is that as helpful as my GP has been, it would have been better to go to the hospital directly and right through what I have done now through the learning disability liaison nurse because I'm then sort of cutting out the middleman. I'm telling the hospital directly what I need.
00:27:48
Speaker
yeah And it's her job to make sure that her hospital does it so it's easier. um yeah And that's what's happening. She's doing that, you know, as we speak. So um as brilliant as my GP was, as it's he's is he has he emailed the right department? Has he you know, there's there's always room for sort of error.
00:28:11
Speaker
Yeah, but he understands PDA, which is great, isn't it? Yeah, very much so. You know, what the difficulties for you are in accessing then the the support that you need at hospital, isn't it?
00:28:23
Speaker
Yeah, yeah. yeah That's great. So to round off this first and part of this episode, then if you could um sort of summarize the key sort of maybe the and and know the top three, four reasonable adjustments for a PDA individual if they need medical treatment and you are advising a medical team, what would what would what would you
Key Adjustments for PDA Care
00:28:49
Speaker
advise them? What reasonable adjustments are the most important for for somebody with a PDA profile?
00:28:55
Speaker
um to do as much in hospital as you need to. But if anything can be done at home in another setting, then do it. you know so So if they've had their main treatment in hospital, but maybe they need to have a dressing changed and a blood test done every day,
00:29:21
Speaker
Can they not have that done at home? There are teams of nurses who will come to the home and take blood daily and change dressings. So, you know, think of the bigger picture. Is it is it sensible? to say you know um Also where the treatment takes place.
00:29:39
Speaker
um So for me, i cannot be on a ward. I need to be in a side room. I'm happy for that side room to be anywhere and it could be an office for all I care.
00:29:49
Speaker
I'm not fussed. I just want a side room. um So that's an important one. And never forget the sensory. um Never forget that. um So wherever you put the PDA, make sure that there's access to fresh air, natural light.
00:30:07
Speaker
um The... um So the gynaecology maternity areas of the hospital are f often quite good um because then they're normally recently built um and are usually quite light and airy.
00:30:23
Speaker
and again as long as they're being cared for, it doesn't matter that it's not on the respiratory ward or on the, you know, it doesn't matter, does it? As long as it's somewhere safe and where they've got the medical treatment they need.
00:30:37
Speaker
um And the other one is to keep things as sort of chilled as possible. Okay. Yeah. and don't sort of rush about and panic and just...
00:30:53
Speaker
It's all good. you know Even if it's not all good. and just And be chatty and light.
00:31:03
Speaker
yeah Yeah. But as you say, chatty and light, but don't be condescending and hold information from you. Yeah. Yeah. Front, but yeah. Keeping it light. Yeah.
00:31:14
Speaker
Yeah. And as you say, and if those reasonable adjustments are, you know, if they can put them in place, it just means that accessing medical and healthcare care is, is eat that little bit easier for a PDA individual, isn't it?
00:31:27
Speaker
Yeah. And be clear what's, what's happening. Don't sort of suddenly start adding things in that weren't agreed to. So, you know, if I'm told I'm coming in for this, this, and this, and this, and then,
00:31:40
Speaker
without my symptoms changing, they suddenly say we need to do this, it's likely that's not going to happen because i haven't developed something new that we didn't know about, which is fair enough.
00:31:52
Speaker
yeah um But if they suddenly announce, oh, you've got to have a CT scan, I'll be like, well, we've already done one of those a few weeks ago. So you've not told me that I needed this, I'm not prepared for it, I can't do it.
00:32:05
Speaker
So you need to be clear on what treatment you're actually going to have, unless obviously there's an emergency. Yeah. yeah But, yeah.
Conclusion and Resources
00:32:15
Speaker
That's brilliant. Thank you. Well, yeah, and I think, you know, you share in your personal experiences of how, you know, the the difficulties that you've had, the successes you've had in in accessing health care is really going to be beneficial, not only for other PDA individuals who also and need to access health care, but also for health care professionals to hear it, you know, those personal experiences is really important. So thank you so much for sharing that with us.
00:32:40
Speaker
and And if today's conversation has resonated with you as a listener, remember, you're not alone and there is support out there for you. You can find more resources, guides and community support on the PDA Society website and hub.
00:32:55
Speaker
And we've linked everything and for that in the show notes. If you found this episode helpful, please share it with someone who might benefit. And don't forget to subscribe so that you don't miss any future conversations. So thanks again, Julia. We really, really appreciate you sharing your personal experiences with us.
00:33:13
Speaker
And um to our listeners, until next time, take care of yourself and each other. Take care. Bye bye. So if you want to hear more from today's special guest, then there is a longer version of this podcast available over on our training hub. Sponsors of our training hub make it possible for us to create and put out this podcast for everyone for free.
00:33:33
Speaker
As a thank you, they get free access to all recordings and self-guided training on our training hub. Thank you, subscribers, for your generosity. If you'd like to become a subscriber, there's a link in our show notes.