WEBVTT
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Hello and welcome to Excellence in Practice, Voices for Better Care, a podcast by the National Center of Excellence in Intellectual Disability Health.
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Here we will be sharing real stories and advice from expert clinicians and people with lived experience on improving health care for people with intellectual disability.
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We hope you enjoy this episode.
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I am Ricky Kramer and I am co-hosting with Rayline Griffiths.
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The National Centre of Excellence in Intellectual Disability Health recognizes and respects the traditional custodians of country across Australia.
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We acknowledge their deep and ongoing connection to land, waters and community and pay our respect to elders past and present.
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This podcast includes discussions about the healthcare experiences of people with intellectual disability.
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Some stories may include mentions of trauma, medical mistreatment or discrimination and could be distressing for some listeners.
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If you are uncomfortable, please take a break or skip this episode.
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Thank you for joining us for this episode on women's health care for people with intellectual disability.
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Reproductive and sexual health care is an important part of health and well-being.
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Healthcare professionals have a role in making doctors' care work well for people with intellectual disability.
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This includes understanding their needs and helping them get the care they need.
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In this episode, we will be speaking to Deborah Bateson, who is a doctor, educator, researcher, and advocate in sexual and reproductive health.
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She is a professor of practice for the Sydney Medical School at the University of Sydney, and she leads a screen equal project to increase cervical screening for people with intellectual disability.
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We will also be speaking to Melinda Brown, who is a self-advocate and inclusion advisor for the South Australian Council on Intellectual Disability.
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Thank you Deborah and Melinda for joining us to talk about such an important topic.
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To our listeners, we hope you enjoy the episode and learn about how you can deliver better healthcare for people with intellectual disabilities.
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Hi Deborah.
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Well, thank you for joining us today.
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It's my pleasure.
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It's lovely to meet you, Ricky.
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You too.
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Um I'm sort of the first question I wanted to ask you is can you please start by telling us about yourself and your experience working with people with intellectual disability in healthcare?
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Well, thank you for that question.
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So I've been a doctor, I'm a doctor by background, uh, for many years now, probably over 20 years.
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And for much of that career, I've I was worked at family planning in New South Wales, and I was actually the medical director of family planning.
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So that meant that I provided care for people with intellectual disability as part of my job, uh, particularly in the areas of sexual and reproductive health, as well as, and that includes cervical screening, and that's my focus at the moment.
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Um, but I also actually spent a lot of that time is also around training um other doctors and nurses uh around how to provide accessible services, uh respectful care uh for people with intellectual disability as well.
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And now I'm at the University of Sydney working as a researcher, and I've just got the great privilege of being able to lead, uh co-lead um a research project.
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It's called Screen Equal.
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It's funded by the Australian government, and it's all around a co-design project to increase, see how we can best increase participation or uh cervical in cervical screening in the national program by people with intellectual disability.
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Yeah, that's uh it sounds like you're very busy, lots of work going on, which is exciting.
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It is, it is.
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Thank you.
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That's great.
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Uh the next question is what are some of the biggest challenges when it comes to health care for women with intellectual disabilities?
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And how are these challenges specific to women with intellectual disability?
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No, thank you for that question.
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Uh I think it's just to say, I do also work with the Centre of Disability Studies and work with other researchers at at the University of New South Wales who are experts as well in disability and in particular in intellectual disability, and I've learned a lot from them as well.
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Um, I think the main thing that's just very clear, you know, from my clinical practice, but also the research is I think one of the biggest challenges is just that lack of accessible information.
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So there's really, you know, often no resources that are that are really available and accessible, particularly for people with intellectual disability, no easy read resources, um, but also lack of accessible services as well.
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And I think that will often come down to uh, you know, a lack of training or awareness sometimes by the service provider.
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So that's a key focus of mine.
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But I think the other key challenge for people with intellectual disability is sometimes having a lack of autonomy or being you know unempowered, not empowered to in that healthcare setting to be able to be supported, to make, you know, their own decisions and sometimes other people making decisions for them, making assumptions, misassumptions sometimes.
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So I think, you know, for my my work, I would say those are the main challenges.
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Yeah, and I think, yeah, obviously that idea of yeah, not being able to make your own decision on things can uh change a lot of things.
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I think that's right.
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Yeah.
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All right, so the next one we're going to is have you seen a woman with intellectual disabilities struggle to get the health care she needed?
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And what happened and what should have been done differently?
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Yes, it's a very um important question.
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And I have uh, yes, I have come across uh, you know, many people actually, sometimes I can say over the years, I've worked for a very long time, um, who haven't been able to access that care.
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I do remember a young woman uh with intellectual disability.
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Her partner had intellectual disability as well, and she'd made a very careful they together and made a very careful decision about wanting to get pregnant and to have a baby.
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Uh, they knew a lot about all sorts of things about how to prepare for a pregnancy, but people around them put up lots of barriers and and you know, made decisions that this wouldn't be uh wouldn't be the right way forward.
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And so I think, you know, it just I was very glad to be able to see this uh this young couple and be able to support, you know, that decision.
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Another one was at the other end of the reproductive spectrum, I suppose.
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And this was a an older woman uh with intellectual disability, also from a culturally and linguistically diverse background.
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And I eventually saw she'd been experiencing terrible symptoms of menopause.
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Uh, so hot flushes.
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It was really disturbing her life.
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Um sh her mother accompanied her to her consultations, who's great and very caring.
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Um, but she'd seen quite a few doctors and and hadn't been able to get that care that anybody else would have been given.
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I think there was, again, assumptions or deprioritization or perhaps worrying that there was other, you know, something else going on and feeling worried about prescribing some fairly, you know, commonly used medications to overcome these problems because I think that the doctors suddenly somehow just felt a bit out of their depth.
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So I think what I see sometimes is doctors and nurses wanting to do the right thing by people with intellectual disability, but just often lacking that confidence, um, confidence around it and and just around cervical screening, certainly as well.
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Um, I've seen quite a few people, and people have told us that, you know, they've they've um had heard about cervical screening, but they just hadn't been able to access it for a variety of reasons.
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Of again, people having competing demands in a in a consultation and it being deprioritized.
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Thank you for sharing that.
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Can you tell us about a time when you were able to work with a patient who had previous previously faced some of the challenges you shared earlier?
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And how did you make this experience positive for them?
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Oh, thank you for that question, Ricky.
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And perhaps I can just reflect back on those examples I gave before.
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Um, and I think it is well, because I'd had the the good fortune to be able to learn from others.
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Um, where I worked at family planning, we uh did have visits from different groups, including people with intellectual disability who could share their experiences and often negative experiences for healthcare.
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So that's how, you know, I partly learnt uh what I've learned.
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Uh so it's really around ensuring that you have got enough time uh that you do listen.
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And sometimes people will attend with a family member or with a with a support worker, for instance.
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Um, and you know, sometimes it can be tempting sometimes just to listen to the support worker or the family member, but it's ensuring that you're actually directing your questions and listening to the person whose care you're providing.
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So the person with intellectual disability.
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And I think it's also about coming from a position of assuming that people do have that capacity to make a decision for themselves rather than the other way around.
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So not assuming that the person can't do that and someone else has to make that for them.
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And I think the thing I learnt early on as well, and I think sometimes doctors and nurses can feel a bit out of their comfort zone, you know, in in terms of saying to the person, you know, would you would you like to speak to me on your own for a bit?
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You know, would it be okay if your mum or the support worker just steps outside for a little bit?
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Is that okay with with you both?
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And and, you know, almost invariably people say yes.
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And then of course I'd say, but of course, then we'll bring you back in and we can explain what's happening, organise next steps.
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But I think having that time to speak to people on their own is absolutely imperative, invaluable, uh, really important.
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And I think it's part of what we call now, you know, it's a bit of a formal name, but this trauma-informed care.
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Um, because we know that people with intellectual disability, you know, unfortunately, and we know it from the Royal Commission and different sources that, you know, do sometimes have a off higher, you know, uh rate or background of of having experienced sexual trauma, for instance.
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And in my work, which is sometimes, it's asking, you know, it is sexual and reproductive health and providing a cervical screening test.
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We do need to ask some questions just to be able to determine, you know, those next steps.
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So I think those are the the just the really important points.
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Yeah, no, that's that those are some really um great, great points you made there.
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Um reflecting on your your experiences, how has your approach to care evolved over time to provide more inclusive care for women with intellectual disability?
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No, thank you.
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I mean, I think all of us we always learn and sometimes we make mistakes, and and you know, the key thing is to be able to reflect on, you know, how you could do things better and learn from other people as well.
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And I think as, you know, as a doctor as doctors, nurses, healthcare providers, is taking those opportunities to be able to, you know, talk to colleagues, attend learning, you know, update sessions to really sort of learn from people.
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But I suppose I'll come back to that idea.
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I know, you know, in in family planning, we offered training courses to doctors and nurses, and it was always the most um popular course, really, around supporting how to provide that accessible, respectful care, um, trauma-informed care to people with intellectual disability.
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Because I think it's something that that we miss out on at medical school or nursing school.
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It doesn't, you know, there's not uh maybe it's hopefully it's changing now.
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Um, but it is around uh you know just I think particularly around people worry about those issues around consent and they can feel a bit overwhelmed and worry about doing the wrong thing.
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Whereas in fact, you know, it's just about talking with your patient in the same way as you would with anyone, empowering people to have that voice, given different options, helping people to make decisions about what's going to be right for them.
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So I've certainly learned learned a lot uh over those years, and and you know, it's it's great that you're doing this podcast as well to spread it further.
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Yeah, and I think it's very important to get out there and suppose this stuff's not really talked about that often.
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That's right.
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That's right.
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So the next question is you're also an experienced researcher.
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What have you learned are some changes that healthcare professionals can make to improve the experience for women with intellectual disability in healthcare?
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No, thank you, Ricky.
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It's been an absolute privilege privilege to lead this uh work, um Screen Equal, with uh you know lots of other very experienced researchers.
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I'm also working with the Center of Disability, and we've done some work uh co-designing, co-producing a campaign called Screen Me with people with intellectual disability around raising awareness about screening.
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So we've certainly learned a lot, and we know that sometimes people with intellectual disability have have been kept out of research studies because, you know, people haven't thought of thought that's, you know, they've they've worried that people might not be able to, or maybe coerced, and obviously we've got to pay attention to that, but we also want to be able to empower uh the community and people with intellectual disability to join in research studies and through Screen Equal, and we've got leadership by people with intellectual disability, a researcher, the chief investigator with intellectual disability.
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And we've been able to hold interviews with the community, with people with intellectual disability, but also with support workers and with healthcare providers.
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And we've learned a lot about, you know, unfortunately, sometimes some of the negative experiences that women have told us about, you know, including a lack of respectful care, cervical screening is, you know, it's a we've now got a new way of doing it, which is fantastic, where people can take their own samples and can be empowered to do that.
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But, you know, traditionally people have had us what we call a speculum examination.
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And sometimes we've heard really distressing stories of of women where they haven't been told what's happening, they haven't been told what's going on.
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They've said to the doctor and nurse sometimes to stop, uh, but that hasn't, you know, hasn't been listened to.
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And these are these are distressing service stories.
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So what we can do, we we can, you know, use these then.
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And what we're doing is is using uh this information, these stories to to develop training for doctors and nurses, to develop materials for support we people as well.
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Um we've here heard from people with intellectual disabilities.
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Support people can be fantastic, of course, and and really, you know, provide access to care, but sometimes there can be misassumptions.
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And we know from our research that people have told us that, you know, sometimes there's misassumptions about people with intellectual disability about their sexual activity, uh, and that they, you know, not having not sexually active.
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And in fact, you know, if I talk to people on their own or we talk to people in the research study, we find out that they are having a consensual sexual relationship.
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And and it, you know, but there can be all these barriers to care.
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So I think research is a really important way to find out from the community.
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Obviously, we have to make sure we've got all the right support in place for people.
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Uh, sometimes talking about intimate um areas of health like cervical screening, it can sometimes be triggering for people.
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So we need to make sure that we've also got support on hand if people do need some some additional support too.
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What have people with intellectual disability taught you about how woman women's health care should be delivered?
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Oh, it's a great question because I think I've really learned everything uh from people with intellectual disabilities through my years working uh, you know, with with um people in consultations, but also now through the research as well.
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So a real privilege.
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Uh and it is, you know, having those interactions with people, it it's just to, you know, hone my approach, change my approach to ensure just that I I think particularly around just not making assumptions.
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I think that's probably one of the biggest things that I've learned because when I was a junior doctor, a lot a young doctor, I think it's very easy to make assumptions about the person before you and what they understand and what they don't understand and what their history is and what it's not, uh, and just to stop and to think and to listen and to ask respectfully.
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I think that's probably one of the biggest uh biggest learnings I've had.
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Uh, because, you know, I it yes, we we must not fall into that trap.
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Um, so I think I think that's it.
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And I think it's, you know, just listening about how you can improve your practice.
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There's lots of learnings all the time, but I think the misassumptions is is a key one.
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Uh and also, of course, the other key thing is it's very easy to to think in groups when you're a you know, a doctor or a nurse, or this group of people with intellectual disability, this group of women, and of course, everyone's an individual, and everyone, just like every group, you know, everyone in in society has their particular and very individual needs, which have been, you know, as a result of who they are, their background, uh, and it's just understanding, treating people no differently to anyone else, understanding and and finding out what these particular uh needs are.
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So I think those are probably just two of the the messages I uh that that's certainly what I've learned over the years.
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Yeah, no, that's really great.
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How difficult is it talking to the patient's um, you know, parents or siblings or whoever it may be about for them being able to make their own decisions?
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I think it's a really important question, Ricky, and and you know, it can be challenging sometimes, but certainly um I have in the past sometimes, you know, I I've certainly had consultations where someone's very well-meaning, loving, caring, you know, mother or sister will say, Oh no, no, you know, um, you know, let's call her Asher doesn't, you know, doesn't need a cervical screening test, or um, or she wouldn't tolerate it well, or or you know, the that's not that's not not something that she would want.
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So talking for people, um, and then finding that time to be able to talk on their own, to let's say in this case, that that made up person Asher, but then sometimes bringing the mum or you know, back or whoever it is, back into the consultation and talking together then, uh, and in a very respectful way.
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I mean, it it, you know, we know sometimes that's uh that you know there can be some some control, of course, and and you know, negative things happening, but in general, people are wanting to work in the best interest of the person they're supporting.
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I know sometimes with support workers they can just be very busy or we haven't got time for that and it it's a deep you know low priority.
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So I think it is just often it is, you know, helping support.
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We call it sometimes health literacy is a bit formal, but just understanding that, you know, for instance, if I come to to cervical screening, you know, this is for everyone aged 25 to 74 and and, you know, the um Asher, your daughter or or whoever it may be, you know, is I've given some information about that and and perhaps, you know, she's decided she, you know, this this would be something she'd like to consider.
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I can give you some more information to take away today.
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Uh then you can come back another time if you know if you you make that decision.
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So I think it is it can be difficult and it can take a few times to uh we can see that you know people, you know, well-meaning parents can feel a loss of control and and you know just and and feel anxious for the you know that young person.
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I m I must say, Ricky, that's why it's so um it's so wonderful these days with cervical uh cancer prevention, cervical screening, because now we have this option where a person can either take their own sample themselves or or you know the doctor or nurse can take it for them without using this instrument which a lot of mothers will remember as being a bit uncomfortable and not a pleasant experience.
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So now we've got it's very nice to have an alternative to offer as well which make people feel more comfortable.
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Absolutely and I guess that misconception of you know people with this intellectual disability are just like any other person would say so um and should be treated fairly and respectfully.
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Yes absolutely it's all about that respect and that respect for that individual person I think is the is the key thing.
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So I think you know I I mean I'm hoping actually I'm I I am optimistic that you know in medical school and nursing schools now there is much more awareness which is great.
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And you know all doctors and nurses they all want to learn how to do better, how to you know make their practices more acceptable for people and and sometimes they may not see very many people with intellectual disability and so you know just feel a little bit out of the comfort zone.
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So this is why these these you know this discussion is so important because people wanted to do their best of course and just need those that bit of bit of confidence.
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So it's great.
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Yeah absolutely is there anything else you would like to say to healthcare professionals who want to make their practices more inclusive and accessible for people with intellectual disability?
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Yeah so thank you Ricky.
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I think the first thing to know is that there are lots of excellent resources out there to help support health providers, practitioners in their practice to make uh their consultations to help them along the way to make the consultations accessible and more inclusive, respectful for people with intellectual disability.
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So that's the the a really important area in fact the you know my area on the National Cervical screening program website, it's a Department of Health website that are there is a toolkit including information for GPs and nurses around supporting people with intellectual disability.
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So do make use of of all those resources and all the excellent resources through the the Centre of Excellence.
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You know there's lots of help out there.
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So that's the first thing I would say but it is about you know having consideration around your practice and it is you know ensure ensuring that you do provide adequate time.
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I know that can be difficult in busy general practice but sometimes you don't need to do everything on the same at the same consultation you can actually sometimes bring people back for another consultation as well.
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But I think the at the heart of it is is really that coming from that that baseline of assuming capacity I think that's really key that people can make their own decisions and therefore tailoring and and your your consultation as I mentioned the example before of ensuring that you're respectful of course and talking to the people you know the family member the support worker but seeing if you can uh and you know as I say everyone will generally agree to that spend some time with that person on their own so you can really hear their own voice.
00:26:18.559 --> 00:26:50.240
So I think those are all the key things and just remembering if you get any opportunity any professional development opportunity where you can actually listen to people's experience lived experience of of interactions with healthcare providers it's really important because we I think we can sometimes underestimate the stigma that can accompany you know people with intellectual disabilities sometimes accessing services and and you know feeling dismissed sometimes and we must just be alert to that at all times.
00:26:50.400 --> 00:28:26.799
So I think just grab hold of any you know any um professional education that you can I know we ran a series of website uh webinars and this um webinars on the national cervical screening program now uh run by I'll name Trisha Maloney she's actually a person with a physical disability but very experienced in in working with people she's an advocate uh working with people with disability and and it was these are really interactive webinars are really useful for for all health professionals to have a look at that's great well thank you for your time and for sharing all your great information oh it's been an absolute pleasure Ricky thank you thank you for the invitation that's alright thank you thank you Deborah for sharing your experience and stories as a clinician and researcher we will now hear from Melinda who will share her experiences in the healthcare system and advise for healthcare professors hi Melinda thank you for joining us today can you please start by telling us about yourself and your work my name is Relinda Brown and I'm a self-advocate and the inclusion advisor as SACED I am on the cancer survivorship advisory group and Ms.
00:28:26.960 --> 00:29:14.799
Flinders uni Self Australia Intellectual Disability Health Service Advisory Group Committee as well as a member thank you for having me here today well thank you for joining us for this episode on women's health can you tell us about what your experience has been like in the healthcare system I have had ups and downs experience with health care systems doctors take in hard language and not explaining things in a way that I could understand.
00:29:15.279 --> 00:29:27.839
It could be more doctors take it easier and slowly to introduce um how to what's wrong with you as well to break it down for you.
00:29:28.000 --> 00:29:37.200
But the health system is not that great in South Australia and other Australia because the doctors need more training.
00:29:37.599 --> 00:30:08.640
Yeah that's great thank you thank you for sharing your experiences so we know that accessing effective health care for women with intellectual disability can be hard what challenges have you had accessing healthcare or with healthcare professionals when going to the doctors for women's health care things like reproductive or sexual health?
00:30:09.680 --> 00:30:30.400
My experience is having arena put in I want more information is uh how about the process and what type and it was no easy read to understand it what's gonna step by step or what's gonna happen.
00:30:31.519 --> 00:30:44.559
And and the different ways you can have that put in as well like on the chair by yourself or being put to sleep in the hostel to have it done.
00:30:44.640 --> 00:30:49.920
So there's not much information out there but it's your choices.
00:30:50.319 --> 00:31:09.519
Also I have a system on my ovaries that and it's hard when I am singing a daughter a daughter note consistently that it'll be hard to know who I can talk to properly about it.
00:31:11.039 --> 00:31:37.039
And having an ultrasound and not knowing how to position myself to be simply to the seminant to guide me but it can be anxious really anxious and I wanted someone to explain the more the process to me that's really great.
00:31:37.519 --> 00:31:58.319
Thank you for sharing those challenges can you tell us about a time when you felt listened to, understood and comfortable with the healthcare professional and what did they do that made your experience a good one?
00:31:59.839 --> 00:32:41.119
Um a good one if I I went to have my breast screening and I had a a really good doctor telling me how to position myself, talk to me, can I please um put it where they need to put it and guide me in a professional way that I feel comfortable but I think hopefully they'll have more people like that to guide you. 'Cause it is a difficult position you have to put yourself in that machine.
00:32:42.640 --> 00:33:25.119
Yeah absolutely thank you for sharing your more positive experiences and generally has it been more good experiences or bad experiences that you've had um mine experience it'll be half and half some are really good and some I do have to say stock and slow down and talk to me in not so doctor words I need simpler words.
00:33:26.160 --> 00:33:29.599
So and draw me a diagram.
00:33:30.720 --> 00:33:58.880
Yep and that's really helped has it it's really helped me because then if I do they draw a diagram and tell me why I'm taking a tablet or what I need dung then it makes my me feel better in nervous wise or sighting sometimes I need to know what's wrong.
00:33:59.920 --> 00:34:08.559
When going to the doctor to get treatment for sensitive topics how can doctors make you feel more comfortable?
00:34:09.119 --> 00:34:22.000
Are there any tools or resources that healthcare professionals have used that have helped you to diff to better understand them and feel comfortable?
00:34:22.320 --> 00:34:54.079
Also when you're in a appointment to check in with with your patients and get some training on how to work with people with intellectual disabilities or other disabilities as well and just using easy read diagrams draw even um uh the tools you know cards and things that people can see and point.
00:34:56.239 --> 00:35:19.119
And has it helped you better understand them and feel a bit more comfortable when you're with them yes it will make more comfortable Tyron and understand them but also check in at the end of the appointment if you make sure that everything's okay.
00:35:20.000 --> 00:35:30.880
What do you wish healthcare professionals knew about women's health care when treating people with intellectual disability?
00:35:32.639 --> 00:36:07.199
I hope women out there go get the with intellectual disability get the health check because even though I didn't have based parents and some doctors they need to go get the tested, even just ask a friend to go with them or support and go to the appointments with them and try and find an easier way for them 'cause there is different techniques out there for wounds as well.
00:36:09.920 --> 00:36:25.920
Yeah great well thank you Melinda you've shared a lot of great information what advice for other people would you give when they when they go see a healthcare professional?
00:36:26.719 --> 00:36:39.119
Don't give up if you have a bad experience hit going to see different doctors and you you might find a good one to help you.
00:36:39.360 --> 00:36:51.440
Don't give up if you had a bad one because you don't know what's gonna happen to you down the run a long time because you don't want to get anything bad news.
00:36:52.000 --> 00:36:58.000
So keep going and get the results if you're not getting the right stuff.
00:36:58.239 --> 00:37:25.119
The right treatment I think I'll say if you struggle to communicate with the doctor ask them to draw pictures or show them diagrams so or use your own tool what you bring to their assist and talk to the doctor and show what's wrong with you.
00:37:26.719 --> 00:37:40.639
So make sure you try get everything in your in your appointment to what you're acquired yourself to be healthy.
00:37:40.960 --> 00:37:51.840
I just don't want them to think that a bad experience is not always the case you always can have good experience as well but not to give up.
00:37:52.159 --> 00:38:33.519
What if someone someone with intellectual disability is scared of going to a particular healthcare professional um any thoughts or ideas of what might might help them my advice is go and talk to your friends or someone that you can trust before you go to the appointment and if you feel uncomfortable going by yourself please ask someone that you trust to go with you.
00:38:35.119 --> 00:38:46.239
So they got is as well if you got a bit too nervous upset that they can report back to you later when you're better.
00:38:46.719 --> 00:39:02.719
Yeah right so Melinda why are you so passionate about passionate about women's health and specifically about a whole range of different women's health?
00:39:03.280 --> 00:39:16.159
Uh with women's health I just think that it's because it's a lot technical in women's health probably in some tools that you're not sure of.
00:39:16.400 --> 00:39:30.079
It could be like I was blind like a Patsman there's a few different pastomes around so and it's a different way that people can get that service or you can do it yourself.
00:39:30.400 --> 00:39:43.119
But it's a thing that it can be scary, could be a slightly to and you it might not feel like you're getting to the right s spot.
00:39:43.280 --> 00:39:57.760
So I'm not sure how people feel when they got the when I went to the doctors I feel uncomfortable to do it in the GP's rooms because they didn't have a suitable equipment.
00:39:58.159 --> 00:40:10.320
If they had a suit in the hospital they had a suitable chair then I had it there and it was just like I didn't know it's been done.
00:40:10.800 --> 00:40:19.199
So going to different equipment it can be better in better experiences.
00:40:19.519 --> 00:40:41.440
Yeah there's lots of parts and lots complicated to get tested properly Is there any other advice you would give to healthcare professionals who want to make their practices more inclusive and accessible to women with intellectual disability?
00:40:42.559 --> 00:41:57.440
Well say go and do awareness training and inclusive training as well also just go and ask your disability people that you as your patients what else they need to know or how they feel in your room your clinic's rooms could be have a comfy chair maybe tilt the lighting maybe color space widgets um also more time so give them time in the poem it's longer and also maybe give the patient five minutes break if you need to go extremes if they're going overwhelmed let them go out for a walk come back and do the next part of as a your patient the next few minutes with them talking about their health and let them bring your support person or a friend as well wherever they feel comfortable with but make sure you're talking to your patient.
00:41:59.920 --> 00:42:06.639
Absolutely well thank you for your time and for sharing your story.
00:42:08.239 --> 00:43:11.440
Thank you for having me thank you for listening to Excellence in practice Voices for Better Care We hope you enjoyed the episode and learned more about delivering better care for people with intellectual disability If you've been affected by anything discussed in this episode please know you're not alone support is available if you're in crisis or need someone to talk to you can contact Lifeline at 131114 in Australia to learn more about the work of the National Centre of Excellence in intellectual disability health or to get involved visit our website nceidh.org dot au
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Hello and welcome to Excellence in Practice, Voices for Better Care, a podcast by the National Center of Excellence in Intellectual Disability Health.
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Here we will be sharing real stories and advice from expert clinicians and people with lived experience on improving health care for people with intellectual disability.
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We hope you enjoy this episode.
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I am Ricky Kramer and I am co-hosting with Rayline Griffiths.
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The National Centre of Excellence in Intellectual Disability Health recognizes and respects the traditional custodians of country across Australia.
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We acknowledge their deep and ongoing connection to land, waters and community and pay our respect to elders past and present.
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This podcast includes discussions about the healthcare experiences of people with intellectual disability.
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Some stories may include mentions of trauma, medical mistreatment or discrimination and could be distressing for some listeners.
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If you are uncomfortable, please take a break or skip this episode.
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Thank you for joining us for this episode on women's health care for people with intellectual disability.
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Reproductive and sexual health care is an important part of health and well-being.
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Healthcare professionals have a role in making doctors' care work well for people with intellectual disability.
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This includes understanding their needs and helping them get the care they need.
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In this episode, we will be speaking to Deborah Bateson, who is a doctor, educator, researcher, and advocate in sexual and reproductive health.
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She is a professor of practice for the Sydney Medical School at the University of Sydney, and she leads a screen equal project to increase cervical screening for people with intellectual disability.
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We will also be speaking to Melinda Brown, who is a self-advocate and inclusion advisor for the South Australian Council on Intellectual Disability.
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Thank you Deborah and Melinda for joining us to talk about such an important topic.
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To our listeners, we hope you enjoy the episode and learn about how you can deliver better healthcare for people with intellectual disabilities.
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Hi Deborah.
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Well, thank you for joining us today.
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It's my pleasure.
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It's lovely to meet you, Ricky.
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You too.
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Um I'm sort of the first question I wanted to ask you is can you please start by telling us about yourself and your experience working with people with intellectual disability in healthcare?
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Well, thank you for that question.
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So I've been a doctor, I'm a doctor by background, uh, for many years now, probably over 20 years.
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And for much of that career, I've I was worked at family planning in New South Wales, and I was actually the medical director of family planning.
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So that meant that I provided care for people with intellectual disability as part of my job, uh, particularly in the areas of sexual and reproductive health, as well as, and that includes cervical screening, and that's my focus at the moment.
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Um, but I also actually spent a lot of that time is also around training um other doctors and nurses uh around how to provide accessible services, uh respectful care uh for people with intellectual disability as well.
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And now I'm at the University of Sydney working as a researcher, and I've just got the great privilege of being able to lead, uh co-lead um a research project.
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It's called Screen Equal.
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It's funded by the Australian government, and it's all around a co-design project to increase, see how we can best increase participation or uh cervical in cervical screening in the national program by people with intellectual disability.
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Yeah, that's uh it sounds like you're very busy, lots of work going on, which is exciting.
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It is, it is.
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Thank you.
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That's great.
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Uh the next question is what are some of the biggest challenges when it comes to health care for women with intellectual disabilities?
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And how are these challenges specific to women with intellectual disability?
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No, thank you for that question.
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Uh I think it's just to say, I do also work with the Centre of Disability Studies and work with other researchers at at the University of New South Wales who are experts as well in disability and in particular in intellectual disability, and I've learned a lot from them as well.
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Um, I think the main thing that's just very clear, you know, from my clinical practice, but also the research is I think one of the biggest challenges is just that lack of accessible information.
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So there's really, you know, often no resources that are that are really available and accessible, particularly for people with intellectual disability, no easy read resources, um, but also lack of accessible services as well.
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And I think that will often come down to uh, you know, a lack of training or awareness sometimes by the service provider.
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So that's a key focus of mine.
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But I think the other key challenge for people with intellectual disability is sometimes having a lack of autonomy or being you know unempowered, not empowered to in that healthcare setting to be able to be supported, to make, you know, their own decisions and sometimes other people making decisions for them, making assumptions, misassumptions sometimes.
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So I think, you know, for my my work, I would say those are the main challenges.
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Yeah, and I think, yeah, obviously that idea of yeah, not being able to make your own decision on things can uh change a lot of things.
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I think that's right.
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Yeah.
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All right, so the next one we're going to is have you seen a woman with intellectual disabilities struggle to get the health care she needed?
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And what happened and what should have been done differently?
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Yes, it's a very um important question.
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And I have uh, yes, I have come across uh, you know, many people actually, sometimes I can say over the years, I've worked for a very long time, um, who haven't been able to access that care.
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I do remember a young woman uh with intellectual disability.
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Her partner had intellectual disability as well, and she'd made a very careful they together and made a very careful decision about wanting to get pregnant and to have a baby.
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Uh, they knew a lot about all sorts of things about how to prepare for a pregnancy, but people around them put up lots of barriers and and you know, made decisions that this wouldn't be uh wouldn't be the right way forward.
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And so I think, you know, it just I was very glad to be able to see this uh this young couple and be able to support, you know, that decision.
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Another one was at the other end of the reproductive spectrum, I suppose.
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And this was a an older woman uh with intellectual disability, also from a culturally and linguistically diverse background.
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And I eventually saw she'd been experiencing terrible symptoms of menopause.
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Uh, so hot flushes.
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It was really disturbing her life.
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Um sh her mother accompanied her to her consultations, who's great and very caring.
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Um, but she'd seen quite a few doctors and and hadn't been able to get that care that anybody else would have been given.
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I think there was, again, assumptions or deprioritization or perhaps worrying that there was other, you know, something else going on and feeling worried about prescribing some fairly, you know, commonly used medications to overcome these problems because I think that the doctors suddenly somehow just felt a bit out of their depth.
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So I think what I see sometimes is doctors and nurses wanting to do the right thing by people with intellectual disability, but just often lacking that confidence, um, confidence around it and and just around cervical screening, certainly as well.
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Um, I've seen quite a few people, and people have told us that, you know, they've they've um had heard about cervical screening, but they just hadn't been able to access it for a variety of reasons.
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Of again, people having competing demands in a in a consultation and it being deprioritized.
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Thank you for sharing that.
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Can you tell us about a time when you were able to work with a patient who had previous previously faced some of the challenges you shared earlier?
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And how did you make this experience positive for them?
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Oh, thank you for that question, Ricky.
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And perhaps I can just reflect back on those examples I gave before.
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Um, and I think it is well, because I'd had the the good fortune to be able to learn from others.
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Um, where I worked at family planning, we uh did have visits from different groups, including people with intellectual disability who could share their experiences and often negative experiences for healthcare.
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So that's how, you know, I partly learnt uh what I've learned.
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Uh so it's really around ensuring that you have got enough time uh that you do listen.
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And sometimes people will attend with a family member or with a with a support worker, for instance.
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Um, and you know, sometimes it can be tempting sometimes just to listen to the support worker or the family member, but it's ensuring that you're actually directing your questions and listening to the person whose care you're providing.
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So the person with intellectual disability.
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And I think it's also about coming from a position of assuming that people do have that capacity to make a decision for themselves rather than the other way around.
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So not assuming that the person can't do that and someone else has to make that for them.
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And I think the thing I learnt early on as well, and I think sometimes doctors and nurses can feel a bit out of their comfort zone, you know, in in terms of saying to the person, you know, would you would you like to speak to me on your own for a bit?
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You know, would it be okay if your mum or the support worker just steps outside for a little bit?
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Is that okay with with you both?
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And and, you know, almost invariably people say yes.
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And then of course I'd say, but of course, then we'll bring you back in and we can explain what's happening, organise next steps.
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But I think having that time to speak to people on their own is absolutely imperative, invaluable, uh, really important.
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And I think it's part of what we call now, you know, it's a bit of a formal name, but this trauma-informed care.
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Um, because we know that people with intellectual disability, you know, unfortunately, and we know it from the Royal Commission and different sources that, you know, do sometimes have a off higher, you know, uh rate or background of of having experienced sexual trauma, for instance.
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And in my work, which is sometimes, it's asking, you know, it is sexual and reproductive health and providing a cervical screening test.
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We do need to ask some questions just to be able to determine, you know, those next steps.
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So I think those are the the just the really important points.
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Yeah, no, that's that those are some really um great, great points you made there.
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Um reflecting on your your experiences, how has your approach to care evolved over time to provide more inclusive care for women with intellectual disability?
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No, thank you.
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I mean, I think all of us we always learn and sometimes we make mistakes, and and you know, the key thing is to be able to reflect on, you know, how you could do things better and learn from other people as well.
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And I think as, you know, as a doctor as doctors, nurses, healthcare providers, is taking those opportunities to be able to, you know, talk to colleagues, attend learning, you know, update sessions to really sort of learn from people.
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But I suppose I'll come back to that idea.
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I know, you know, in in family planning, we offered training courses to doctors and nurses, and it was always the most um popular course, really, around supporting how to provide that accessible, respectful care, um, trauma-informed care to people with intellectual disability.
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Because I think it's something that that we miss out on at medical school or nursing school.
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It doesn't, you know, there's not uh maybe it's hopefully it's changing now.
00:14:14.639 --> 00:14:25.519
Um, but it is around uh you know just I think particularly around people worry about those issues around consent and they can feel a bit overwhelmed and worry about doing the wrong thing.
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Whereas in fact, you know, it's just about talking with your patient in the same way as you would with anyone, empowering people to have that voice, given different options, helping people to make decisions about what's going to be right for them.
00:14:38.240 --> 00:14:47.440
So I've certainly learned learned a lot uh over those years, and and you know, it's it's great that you're doing this podcast as well to spread it further.
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Yeah, and I think it's very important to get out there and suppose this stuff's not really talked about that often.
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That's right.
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That's right.
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So the next question is you're also an experienced researcher.
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What have you learned are some changes that healthcare professionals can make to improve the experience for women with intellectual disability in healthcare?
00:15:14.799 --> 00:15:16.080
No, thank you, Ricky.
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It's been an absolute privilege privilege to lead this uh work, um Screen Equal, with uh you know lots of other very experienced researchers.
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I'm also working with the Center of Disability, and we've done some work uh co-designing, co-producing a campaign called Screen Me with people with intellectual disability around raising awareness about screening.
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So we've certainly learned a lot, and we know that sometimes people with intellectual disability have have been kept out of research studies because, you know, people haven't thought of thought that's, you know, they've they've worried that people might not be able to, or maybe coerced, and obviously we've got to pay attention to that, but we also want to be able to empower uh the community and people with intellectual disability to join in research studies and through Screen Equal, and we've got leadership by people with intellectual disability, a researcher, the chief investigator with intellectual disability.
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And we've been able to hold interviews with the community, with people with intellectual disability, but also with support workers and with healthcare providers.
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And we've learned a lot about, you know, unfortunately, sometimes some of the negative experiences that women have told us about, you know, including a lack of respectful care, cervical screening is, you know, it's a we've now got a new way of doing it, which is fantastic, where people can take their own samples and can be empowered to do that.
00:16:44.639 --> 00:16:48.720
But, you know, traditionally people have had us what we call a speculum examination.
00:16:48.799 --> 00:16:56.080
And sometimes we've heard really distressing stories of of women where they haven't been told what's happening, they haven't been told what's going on.
00:16:56.240 --> 00:17:02.799
They've said to the doctor and nurse sometimes to stop, uh, but that hasn't, you know, hasn't been listened to.
00:17:03.039 --> 00:17:05.759
And these are these are distressing service stories.
00:17:06.000 --> 00:17:09.680
So what we can do, we we can, you know, use these then.
00:17:09.759 --> 00:17:20.720
And what we're doing is is using uh this information, these stories to to develop training for doctors and nurses, to develop materials for support we people as well.
00:17:20.960 --> 00:17:24.400
Um we've here heard from people with intellectual disabilities.
00:17:24.559 --> 00:17:32.720
Support people can be fantastic, of course, and and really, you know, provide access to care, but sometimes there can be misassumptions.
00:17:33.039 --> 00:17:46.000
And we know from our research that people have told us that, you know, sometimes there's misassumptions about people with intellectual disability about their sexual activity, uh, and that they, you know, not having not sexually active.
00:17:46.079 --> 00:17:54.160
And in fact, you know, if I talk to people on their own or we talk to people in the research study, we find out that they are having a consensual sexual relationship.
00:17:54.319 --> 00:17:57.920
And and it, you know, but there can be all these barriers to care.
00:17:58.000 --> 00:18:02.880
So I think research is a really important way to find out from the community.
00:18:03.039 --> 00:18:07.279
Obviously, we have to make sure we've got all the right support in place for people.
00:18:07.440 --> 00:18:15.119
Uh, sometimes talking about intimate um areas of health like cervical screening, it can sometimes be triggering for people.
00:18:15.279 --> 00:18:21.279
So we need to make sure that we've also got support on hand if people do need some some additional support too.
00:18:21.759 --> 00:18:30.400
What have people with intellectual disability taught you about how woman women's health care should be delivered?
00:18:30.960 --> 00:18:46.000
Oh, it's a great question because I think I've really learned everything uh from people with intellectual disabilities through my years working uh, you know, with with um people in consultations, but also now through the research as well.
00:18:46.079 --> 00:18:47.680
So a real privilege.
00:18:47.839 --> 00:19:01.839
Uh and it is, you know, having those interactions with people, it it's just to, you know, hone my approach, change my approach to ensure just that I I think particularly around just not making assumptions.
00:19:02.000 --> 00:19:24.720
I think that's probably one of the biggest things that I've learned because when I was a junior doctor, a lot a young doctor, I think it's very easy to make assumptions about the person before you and what they understand and what they don't understand and what their history is and what it's not, uh, and just to stop and to think and to listen and to ask respectfully.
00:19:24.880 --> 00:19:30.559
I think that's probably one of the biggest uh biggest learnings I've had.
00:19:30.640 --> 00:19:35.519
Uh, because, you know, I it yes, we we must not fall into that trap.
00:19:35.680 --> 00:19:37.599
Um, so I think I think that's it.
00:19:37.680 --> 00:19:42.559
And I think it's, you know, just listening about how you can improve your practice.
00:19:42.720 --> 00:19:46.799
There's lots of learnings all the time, but I think the misassumptions is is a key one.
00:19:46.960 --> 00:20:21.839
Uh and also, of course, the other key thing is it's very easy to to think in groups when you're a you know, a doctor or a nurse, or this group of people with intellectual disability, this group of women, and of course, everyone's an individual, and everyone, just like every group, you know, everyone in in society has their particular and very individual needs, which have been, you know, as a result of who they are, their background, uh, and it's just understanding, treating people no differently to anyone else, understanding and and finding out what these particular uh needs are.
00:20:22.000 --> 00:20:28.480
So I think those are probably just two of the the messages I uh that that's certainly what I've learned over the years.
00:20:28.880 --> 00:20:30.720
Yeah, no, that's really great.
00:20:31.039 --> 00:20:48.720
How difficult is it talking to the patient's um, you know, parents or siblings or whoever it may be about for them being able to make their own decisions?
00:20:49.200 --> 00:21:22.240
I think it's a really important question, Ricky, and and you know, it can be challenging sometimes, but certainly um I have in the past sometimes, you know, I I've certainly had consultations where someone's very well-meaning, loving, caring, you know, mother or sister will say, Oh no, no, you know, um, you know, let's call her Asher doesn't, you know, doesn't need a cervical screening test, or um, or she wouldn't tolerate it well, or or you know, the that's not that's not not something that she would want.
00:21:22.400 --> 00:21:42.720
So talking for people, um, and then finding that time to be able to talk on their own, to let's say in this case, that that made up person Asher, but then sometimes bringing the mum or you know, back or whoever it is, back into the consultation and talking together then, uh, and in a very respectful way.
00:21:42.799 --> 00:21:57.519
I mean, it it, you know, we know sometimes that's uh that you know there can be some some control, of course, and and you know, negative things happening, but in general, people are wanting to work in the best interest of the person they're supporting.
00:21:57.680 --> 00:22:04.559
I know sometimes with support workers they can just be very busy or we haven't got time for that and it it's a deep you know low priority.
00:22:04.720 --> 00:22:08.720
So I think it is just often it is, you know, helping support.
00:22:08.880 --> 00:22:32.480
We call it sometimes health literacy is a bit formal, but just understanding that, you know, for instance, if I come to to cervical screening, you know, this is for everyone aged 25 to 74 and and, you know, the um Asher, your daughter or or whoever it may be, you know, is I've given some information about that and and perhaps, you know, she's decided she, you know, this this would be something she'd like to consider.
00:22:32.720 --> 00:22:35.599
I can give you some more information to take away today.
00:22:35.759 --> 00:22:40.400
Uh then you can come back another time if you know if you you make that decision.
00:22:41.200 --> 00:22:57.599
So I think it is it can be difficult and it can take a few times to uh we can see that you know people, you know, well-meaning parents can feel a loss of control and and you know just and and feel anxious for the you know that young person.
00:22:57.839 --> 00:23:19.200
I m I must say, Ricky, that's why it's so um it's so wonderful these days with cervical uh cancer prevention, cervical screening, because now we have this option where a person can either take their own sample themselves or or you know the doctor or nurse can take it for them without using this instrument which a lot of mothers will remember as being a bit uncomfortable and not a pleasant experience.
00:23:19.359 --> 00:23:24.480
So now we've got it's very nice to have an alternative to offer as well which make people feel more comfortable.
00:23:24.880 --> 00:23:40.960
Absolutely and I guess that misconception of you know people with this intellectual disability are just like any other person would say so um and should be treated fairly and respectfully.
00:23:41.279 --> 00:23:48.720
Yes absolutely it's all about that respect and that respect for that individual person I think is the is the key thing.
00:23:48.960 --> 00:23:58.400
So I think you know I I mean I'm hoping actually I'm I I am optimistic that you know in medical school and nursing schools now there is much more awareness which is great.
00:23:58.480 --> 00:24:12.799
And you know all doctors and nurses they all want to learn how to do better, how to you know make their practices more acceptable for people and and sometimes they may not see very many people with intellectual disability and so you know just feel a little bit out of the comfort zone.
00:24:12.880 --> 00:24:21.279
So this is why these these you know this discussion is so important because people wanted to do their best of course and just need those that bit of bit of confidence.
00:24:21.359 --> 00:24:22.400
So it's great.
00:24:22.799 --> 00:24:37.039
Yeah absolutely is there anything else you would like to say to healthcare professionals who want to make their practices more inclusive and accessible for people with intellectual disability?
00:24:37.519 --> 00:24:39.200
Yeah so thank you Ricky.
00:24:39.359 --> 00:24:58.880
I think the first thing to know is that there are lots of excellent resources out there to help support health providers, practitioners in their practice to make uh their consultations to help them along the way to make the consultations accessible and more inclusive, respectful for people with intellectual disability.
00:24:59.119 --> 00:25:16.160
So that's the the a really important area in fact the you know my area on the National Cervical screening program website, it's a Department of Health website that are there is a toolkit including information for GPs and nurses around supporting people with intellectual disability.
00:25:16.319 --> 00:25:21.920
So do make use of of all those resources and all the excellent resources through the the Centre of Excellence.
00:25:22.000 --> 00:25:23.440
You know there's lots of help out there.
00:25:23.519 --> 00:25:35.039
So that's the first thing I would say but it is about you know having consideration around your practice and it is you know ensure ensuring that you do provide adequate time.
00:25:35.200 --> 00:25:45.200
I know that can be difficult in busy general practice but sometimes you don't need to do everything on the same at the same consultation you can actually sometimes bring people back for another consultation as well.
00:25:45.440 --> 00:26:18.319
But I think the at the heart of it is is really that coming from that that baseline of assuming capacity I think that's really key that people can make their own decisions and therefore tailoring and and your your consultation as I mentioned the example before of ensuring that you're respectful of course and talking to the people you know the family member the support worker but seeing if you can uh and you know as I say everyone will generally agree to that spend some time with that person on their own so you can really hear their own voice.
00:26:18.559 --> 00:26:50.240
So I think those are all the key things and just remembering if you get any opportunity any professional development opportunity where you can actually listen to people's experience lived experience of of interactions with healthcare providers it's really important because we I think we can sometimes underestimate the stigma that can accompany you know people with intellectual disabilities sometimes accessing services and and you know feeling dismissed sometimes and we must just be alert to that at all times.
00:26:50.400 --> 00:28:26.799
So I think just grab hold of any you know any um professional education that you can I know we ran a series of website uh webinars and this um webinars on the national cervical screening program now uh run by I'll name Trisha Maloney she's actually a person with a physical disability but very experienced in in working with people she's an advocate uh working with people with disability and and it was these are really interactive webinars are really useful for for all health professionals to have a look at that's great well thank you for your time and for sharing all your great information oh it's been an absolute pleasure Ricky thank you thank you for the invitation that's alright thank you thank you Deborah for sharing your experience and stories as a clinician and researcher we will now hear from Melinda who will share her experiences in the healthcare system and advise for healthcare professors hi Melinda thank you for joining us today can you please start by telling us about yourself and your work my name is Relinda Brown and I'm a self-advocate and the inclusion advisor as SACED I am on the cancer survivorship advisory group and Ms.
00:28:26.960 --> 00:29:14.799
Flinders uni Self Australia Intellectual Disability Health Service Advisory Group Committee as well as a member thank you for having me here today well thank you for joining us for this episode on women's health can you tell us about what your experience has been like in the healthcare system I have had ups and downs experience with health care systems doctors take in hard language and not explaining things in a way that I could understand.
00:29:15.279 --> 00:29:27.839
It could be more doctors take it easier and slowly to introduce um how to what's wrong with you as well to break it down for you.
00:29:28.000 --> 00:29:37.200
But the health system is not that great in South Australia and other Australia because the doctors need more training.
00:29:37.599 --> 00:30:08.640
Yeah that's great thank you thank you for sharing your experiences so we know that accessing effective health care for women with intellectual disability can be hard what challenges have you had accessing healthcare or with healthcare professionals when going to the doctors for women's health care things like reproductive or sexual health?
00:30:09.680 --> 00:30:30.400
My experience is having arena put in I want more information is uh how about the process and what type and it was no easy read to understand it what's gonna step by step or what's gonna happen.
00:30:31.519 --> 00:30:44.559
And and the different ways you can have that put in as well like on the chair by yourself or being put to sleep in the hostel to have it done.
00:30:44.640 --> 00:30:49.920
So there's not much information out there but it's your choices.
00:30:50.319 --> 00:31:09.519
Also I have a system on my ovaries that and it's hard when I am singing a daughter a daughter note consistently that it'll be hard to know who I can talk to properly about it.
00:31:11.039 --> 00:31:37.039
And having an ultrasound and not knowing how to position myself to be simply to the seminant to guide me but it can be anxious really anxious and I wanted someone to explain the more the process to me that's really great.
00:31:37.519 --> 00:31:58.319
Thank you for sharing those challenges can you tell us about a time when you felt listened to, understood and comfortable with the healthcare professional and what did they do that made your experience a good one?
00:31:59.839 --> 00:32:41.119
Um a good one if I I went to have my breast screening and I had a a really good doctor telling me how to position myself, talk to me, can I please um put it where they need to put it and guide me in a professional way that I feel comfortable but I think hopefully they'll have more people like that to guide you. 'Cause it is a difficult position you have to put yourself in that machine.
00:32:42.640 --> 00:33:25.119
Yeah absolutely thank you for sharing your more positive experiences and generally has it been more good experiences or bad experiences that you've had um mine experience it'll be half and half some are really good and some I do have to say stock and slow down and talk to me in not so doctor words I need simpler words.
00:33:26.160 --> 00:33:29.599
So and draw me a diagram.
00:33:30.720 --> 00:33:58.880
Yep and that's really helped has it it's really helped me because then if I do they draw a diagram and tell me why I'm taking a tablet or what I need dung then it makes my me feel better in nervous wise or sighting sometimes I need to know what's wrong.
00:33:59.920 --> 00:34:08.559
When going to the doctor to get treatment for sensitive topics how can doctors make you feel more comfortable?
00:34:09.119 --> 00:34:22.000
Are there any tools or resources that healthcare professionals have used that have helped you to diff to better understand them and feel comfortable?
00:34:22.320 --> 00:34:54.079
Also when you're in a appointment to check in with with your patients and get some training on how to work with people with intellectual disabilities or other disabilities as well and just using easy read diagrams draw even um uh the tools you know cards and things that people can see and point.
00:34:56.239 --> 00:35:19.119
And has it helped you better understand them and feel a bit more comfortable when you're with them yes it will make more comfortable Tyron and understand them but also check in at the end of the appointment if you make sure that everything's okay.
00:35:20.000 --> 00:35:30.880
What do you wish healthcare professionals knew about women's health care when treating people with intellectual disability?
00:35:32.639 --> 00:36:07.199
I hope women out there go get the with intellectual disability get the health check because even though I didn't have based parents and some doctors they need to go get the tested, even just ask a friend to go with them or support and go to the appointments with them and try and find an easier way for them 'cause there is different techniques out there for wounds as well.
00:36:09.920 --> 00:36:25.920
Yeah great well thank you Melinda you've shared a lot of great information what advice for other people would you give when they when they go see a healthcare professional?
00:36:26.719 --> 00:36:39.119
Don't give up if you have a bad experience hit going to see different doctors and you you might find a good one to help you.
00:36:39.360 --> 00:36:51.440
Don't give up if you had a bad one because you don't know what's gonna happen to you down the run a long time because you don't want to get anything bad news.
00:36:52.000 --> 00:36:58.000
So keep going and get the results if you're not getting the right stuff.
00:36:58.239 --> 00:37:25.119
The right treatment I think I'll say if you struggle to communicate with the doctor ask them to draw pictures or show them diagrams so or use your own tool what you bring to their assist and talk to the doctor and show what's wrong with you.
00:37:26.719 --> 00:37:40.639
So make sure you try get everything in your in your appointment to what you're acquired yourself to be healthy.
00:37:40.960 --> 00:37:51.840
I just don't want them to think that a bad experience is not always the case you always can have good experience as well but not to give up.
00:37:52.159 --> 00:38:33.519
What if someone someone with intellectual disability is scared of going to a particular healthcare professional um any thoughts or ideas of what might might help them my advice is go and talk to your friends or someone that you can trust before you go to the appointment and if you feel uncomfortable going by yourself please ask someone that you trust to go with you.
00:38:35.119 --> 00:38:46.239
So they got is as well if you got a bit too nervous upset that they can report back to you later when you're better.
00:38:46.719 --> 00:39:02.719
Yeah right so Melinda why are you so passionate about passionate about women's health and specifically about a whole range of different women's health?
00:39:03.280 --> 00:39:16.159
Uh with women's health I just think that it's because it's a lot technical in women's health probably in some tools that you're not sure of.
00:39:16.400 --> 00:39:30.079
It could be like I was blind like a Patsman there's a few different pastomes around so and it's a different way that people can get that service or you can do it yourself.
00:39:30.400 --> 00:39:43.119
But it's a thing that it can be scary, could be a slightly to and you it might not feel like you're getting to the right s spot.
00:39:43.280 --> 00:39:57.760
So I'm not sure how people feel when they got the when I went to the doctors I feel uncomfortable to do it in the GP's rooms because they didn't have a suitable equipment.
00:39:58.159 --> 00:40:10.320
If they had a suit in the hospital they had a suitable chair then I had it there and it was just like I didn't know it's been done.
00:40:10.800 --> 00:40:19.199
So going to different equipment it can be better in better experiences.
00:40:19.519 --> 00:40:41.440
Yeah there's lots of parts and lots complicated to get tested properly Is there any other advice you would give to healthcare professionals who want to make their practices more inclusive and accessible to women with intellectual disability?
00:40:42.559 --> 00:41:57.440
Well say go and do awareness training and inclusive training as well also just go and ask your disability people that you as your patients what else they need to know or how they feel in your room your clinic's rooms could be have a comfy chair maybe tilt the lighting maybe color space widgets um also more time so give them time in the poem it's longer and also maybe give the patient five minutes break if you need to go extremes if they're going overwhelmed let them go out for a walk come back and do the next part of as a your patient the next few minutes with them talking about their health and let them bring your support person or a friend as well wherever they feel comfortable with but make sure you're talking to your patient.
00:41:59.920 --> 00:42:06.639
Absolutely well thank you for your time and for sharing your story.
00:42:08.239 --> 00:43:11.440
Thank you for having me thank you for listening to Excellence in practice Voices for Better Care We hope you enjoyed the episode and learned more about delivering better care for people with intellectual disability If you've been affected by anything discussed in this episode please know you're not alone support is available if you're in crisis or need someone to talk to you can contact Lifeline at 131114 in Australia to learn more about the work of the National Centre of Excellence in intellectual disability health or to get involved visit our website nceidh.org dot au
