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  • Writer's picturePeta

Is This The Start Of More Inclusion In Medicine For People With Disabilities? 🙌🌼🩺

Equality and access are often difficult for people with disabilities to obtain when interacting with the medical system.

This week we explore how the new Cervical Screening Test could improve and empower people with disabilities in managing our health.

I have two very esteemed experts on this episode, Professor Marion Saville and Professor Deborah Bateson.

Professor Saville currently chairs the working group to review Australia's guidelines in the management of screen detected abnormalities in the National Cervical Screening Programme.

Deborah Bates and is the professor of practise at the Daffodil Centre, which is a joint venture between the University of Sydney and the Cancer Council of New South Wales.

Thank you Marion and Deborah for being willing to speak with me and for the time it took to speak with me.

I am very proud to be presenting this episode to you today.

Connect with Peta:

Instagram: @petahooke



Episode Transcript:

Peta [00:00:03] Hello and welcome to the Can't Stand podcast. The podcast answering your questions on what life is like when you have a disability. My name is Peta. I have cerebral palsy and also the flu. So I apologise for my voice. This is a new type of episode for The I Can't Stand Podcast, so I'll be interested to hear what you think and if this is in fact your first episode. Welcome. I don't have many hobbies in my life at the moment.

Peta [00:00:35] My whole world is pretty much my small business and this very podcast. That means that I also listen to a lot of other podcasts. And through that process, I found out that the cervical cancer screening test had been updated for women and people who have a cervix. There's now a self-administered test and May being me. I instantly thought, I wonder how this could help people with disabilities, and I wonder if the medical system have even considered people with disabilities when developing this new technology. Naturally, being the inquisitive person that I am, I wanted to find out more and to better understand how this new phase in our technology as far as screening for cancer, could help people with disabilities. In this episode, you're going to hear from two very distinguished experts in this area.

Peta [00:01:39] Firstly, Professor Marion Saville. Professor Saville has served on clinical screening advisory committees in Australia, New Zealand and Ontario. She currently chairs the working group to review Australia's guidelines in the management of screen detected abnormalities in the National Cervical Screening Programme. So I feel like she's the perfect person to talk to. Following my conversation with Professor Saville will be a conversation with another professor. But just as esteemed Professor Deborah Bateson in, I will introduce her properly when we get to her portion of the episode. But trust me, I am really confident in the expert I have brought in to speak on this issue and I can't wait to share it with you.

Peta [00:02:39] As somebody with a disability, I've had to interact with the medical industry from day one pretty much. And I know from speaking to other people with disabilities, sometimes that relationship can be quite complicated between a medical practitioner and the person with a disability. I think often we can misunderstand each other on on both sides. From my perspective, a lot of the misunderstanding is to do with access. And that's why I wanted to speak to you today, because access to medical care and the ease of medical care is so important to everyone, including people with disabilities. So can you explain why this new cervical screening test is so important?

Marion [00:03:29] Well, cervical screening is absolutely critical. Australia has amongst the lowest rates of cervical cancer in the world and we're on track to be the first country in the world to eliminate cervical cancer as a public health problem. And that's due to a combination of vaccination programmes and a screening programme. So as of the 1st of July, anyone eligible for screening who hasn't had a negative test in the last five years or due to and eligible can choose between the traditional doctor collected sample or nurse collected sample. That's something that none of us particularly look forward to. The other option is that because of changes in technology, you can get a test that's just as accurate. So what we use is a swab similar to the ones you would have seen for COVID testing, and that's inserted into the vagina and turned around a couple of times and come out and it is accurate. It is quick. For people who are able to do it themselves, we call it self collection, so most people will collect it themselves as long as the patient understands their own anatomy gets it into the right place. But you don't need to get it up into the cervix. You just need to get it into the vagina. The test will work. And just to reassure people, the test has got what we call controls. So if you haven't collected any cells, the lab won't just issue a negative result. It'll say, Oh, this hasn't worked properly. We'll need another sample.

Marion [00:04:59] There are thousands of practitioners and there are those that are well able to meet the needs of people with disability and particularly the mobility issues you're talking about. There are particular beds that can facilitate that, as I'm sure you're totally aware, and finding out who's got one before you get there can be complicated. But I know in the State of Victoria, Cancer Council Victoria Helpline can help people find a cervical screening provider for them. And one of the things they do collect information about from practitioners who are registered on that service is whether or not they have the right sort of equipment to help someone with mobility issues or that sort of disability. I hope this community is one where people have a regular space because obviously getting that relationship with a GP for all of your health needs is important.

Marion [00:05:53] Please go and get screened, but call the practise first. So you've heard about self collection and that's what you're interested in because there will be some practitioners that will need to get the information in terms of this conversation too. And I think the other thing is, is that making sure that. People with disability are aware and that their doctors are aware that one option can be if you don't want to collect yourself because of mobility issues or you physically can't and you also don't want to speculum. The guidelines allow practitioners to take take the sample for you from the vagina just using the swab. You know, I would go into the GP and if I said they don't know about it, you ask them, can contact their lab or find out about it because you know how important it is to participate in screening. This is a preventable cancer. It should not happen. There is a lot of education out there and a lot of resources for space, and there's also resources for consumers at the Department of Health National Cervical Screening Programme website as well.

Peta [00:07:02] And that's what makes me. I mean, it sounds a bit odd to say that I'm excited, but that's what makes me so excited about talking to you today, Marion, because I think many of these conversations would never really had the opportunity to be heard before. And I really hope that as we go on in time, people with disabilities are spoken more of in a more holistic approach to medical practise. So thank you very much for speaking to me today.

Marion [00:07:32] Thanks very much, Peta. I just want to let the audience know that this is the way I've screened. And if we can get you screened, Peta or any of the listeners, then we've done a good job.

Peta [00:07:43] Now on to Professor Deborah Bates and Deborah Bates and is the professor of practise at the Daffodil Centre, which is a joint venture between the University of Sydney and the Cancer Council of New South Wales. She is currently undertaking research in regards to intellectual disabilities and cancer. As somebody with a physical disability, I am always aware of my bias towards physical disabilities and the issues that we face. I felt it was very important that I expand this conversation and speak to Professor Bates in. So what are the sort of access needs that need to be considered for this particular demographic?

Deborah [00:08:29] I mean, I work with people with intellectual disability and we know this, you know, very little by way of easy English. I mean, I have to say, a lot of the materials that are put out, it's difficult for anybody to read. Sometimes they're quite complicated. So just making those materials, that information really accessible. But then there's other barriers as well, which are perhaps a bit more subtle. We know that sometimes, you know, even doctors, nurses can can make assumptions that someone isn't sexually active, for instance, so doesn't need a cervical screening test or d prioritises. It thinks it's not so important. There's other issues that need to be need to be looked at. And so we find that some of these barriers of people making decisions for people with disability rather than letting the person with a disability make their own decisions. And these barriers can be quite, quite challenging sometimes.

Peta [00:09:24] And this is a big part of the reason why I wanted to talk to you today, Professor, because as somebody with a physical disability, particularly being cerebral palsy, I myself, I feel very privileged that I'm not reliant on others to advocate on my behalf, possibly unlike many people with intellectual disabilities. And when you're so reliant on others advocating for you, that could mean that there's a gap in communication or understanding as far as experience. For example, what if a person advocating on behalf of a disabled person doesn't agree or believe that the disabled person is sexually active and therefore doesn't need to be screened? So I'm really interested to know what is the medical fraternity doing to ensure that that gap in knowledge is reduced as much as possible?

Deborah [00:10:22] It's a really important point, Peter. So we do know that, you know, historically there has been a lot of over protection, you can call it sometimes by families, by carers support workers, but also by, you know, doctors and nurses who are, you know, being overly protective and and not allowing people to make their own decisions, not supporting people to make decisions. Our role is to support people to make their own decisions. So if someone comes along with a carer or a family member, you know, we will always want to see that person on their own as well. So they can they can have that privacy. And also, you know, tell us their story. We know it may take longer, but in fact, you know, if we can get someone to have some information they can easily comprehend and then maybe we've got some videos as well. Family planning, I know, has got some excellent videos made by people with intellectual disability, for people with intellectual disability. So that can be very empowering. So we really want to empower people with intellectual disability to be able to make their own decisions.

Peta [00:11:32] I mean, from a personal perspective, I couldn't imagine it would be a very difficult balance to give information that's empowering to the patient, but also not patronising.

Deborah [00:11:46] Look, it is quite a balance. And and, you know, we do need those skills. And I must say, you know, we've had the royal commission into into disability and people with intellectual disability. And I must say, sometimes the doctors and nurses have not always come out so well because we know that they actually haven't got the skills as we do a lot of over the years I've done a lot of training of GP's and you know, they want to do the best but they don't have the skills and the knowledge and they feel a bit out of their comfort zone. I feel a bit under confident themselves, so we really need to start early in medical schools and make people have that inclusive approach to to medicine. And it is about developing those skills in that, in that practical way. So and now, you know, I'm hoping that I am seeing that younger doctors and nurses coming through, they are more inclusive in their approach. They are having those sort of those those communication skills are starting early. I know it's patchy, but there are positive things going on.

Peta [00:12:54] Do you know the rights of women with a disability or those who have a uterus and those who don't have a disability in regards to cancer, is there a discrepancy?

Deborah [00:13:07] There is certainly a discrepancy. So we've just been doing a bit of a review because we've got an exciting research project about to start where we're looking. We're working with people with intellectual disability to help us design ways to increase screening participation. So we've looked at the the literature and look, there's not much I have to say, but certainly some of the evidence in from Australia is that we've got very low rates of screening and people with intellectual disability round about 10%. So that's very low compared to round about 62% for the general population.

Peta [00:13:45] Do you think the changes to the cervical screening test will make a difference and allow people with disabilities and intellectual disabilities access these services more readily? Do you think this is an empowering step?

Deborah [00:14:01] Look, I think it's an empowering step. Well, we don't have evidence around that yet, but we will be collecting it. And I think the key thing, it comes down to that informed choice by a person with a disability, losing intellectual disability, that they are able to support it, to be able to choose whether they want the doctor or nurse to take a sample with a speculum. And that can be quite a challenging experience, you know, to understand what's going on. So now we've got this option of someone being able to take it themselves just with a simple swab. It's a vaginal swab. But we've also got, as the guidelines now allow us and I've done this a couple of times for people where if someone doesn't want a speculum, they do want a cervical screening test, but they've got difficulties in taking it themselves for a variety of reasons. They may have low vision, for instance. They may just feel very unconfident about it than I am able with someone's consent, to be able to take that vaginal swab. Potentially. I was talking to some nurses who work with people with intellectual disability, and they were very excited by the possibility that they could be able to go to a group home, for instance, and facilitate, you know, organising that sort of collection in that setting, which is not the clinic setting. So I think that's got great, great potential as well.

Peta [00:15:23] So I've read. And please correct me if this is incorrect, but I've read that in the future it is hoped that the cervical screening test will be delivered similar to the bowel screening test. It will just arrive in your mailbox for someone who at times struggles to physically access a medical location or, you know, get up on the bed or get out of my wheelchair to have these sort of tests administered. This could be a great thing for accessibility for so many people. Is that something that's on the horizon?

Deborah [00:16:02] Absolutely. So, in fact, already we are looking to open up the access. So, you know, certainly people could actually potentially do a telehealth consultation. So we were already looking at these possibilities. It's early days yet and maybe in the future, as you say, they'll be a system where people are sent the swab because it becomes so normal. People who understand it know what's going on and then you can post it back. So I think there are lots of exciting possibilities for people with disability and it's great that the government is really looking at how can we bring people in to the screening programme who would otherwise miss out?

Peta [00:16:43] And what advice could you offer to people who are listening that might be part of the medical industry or the medical fraternity in interacting with people with disabilities and making sure they get the best clinical care?

Deborah [00:16:59] I think my main advice recommendation to the medical industry in all parts of of anyone who is delivering care or designing services is that we do need to look to be inclusive from the very beginning in all that we're doing. And that's not making assumptions and it does take some doing as well. So we need to make sure that we've got equity of funding. Whenever we're having a service. We need to think, well, would this be suitable for people with a disability? What are the ways that we can support people coming in into the programme? And I think again it does come back to that medical school training, nursing training that we need to start when people are just starting their careers. So I think it's is all about communication. You started with that because I think it is that communication training is really important.

Peta [00:17:50] And then, of course, do you have any advice for people listening who might have an intellectual disability or other disability or be an advocate for somebody with a disability in regards to accessing medical care that is accessible to them?

Deborah [00:18:08] Obviously what we need to do is make it easy for people with intellectual disabilities to engage with us. And I don't want to put the onus on people with intellectual disability to do our work for us. Mean, I think we need to provide the resources, provide the information that is accessible. But I will say, you know, to be an empowered, empowered consumer of medicine, you know, it's your prerogative as well, everyone's prerogative. And so please don't hold back from letting us know if we're doing something that's not working properly for you, that we're talking in a way that doesn't it doesn't resonate with you. Please do feel that, you know, we really want to hear from you about how we can make things make things better. And and what we do know now in medicine is that if we're designing services, we have to do it with the community and it has to be led by the community. And I'm delighted in our research to be working with people with lived experience, living with with intellectual disability and with following this disability inclusive research. Everything that we do is in English and we just learnt such a lot from people with, with intellectual disabilities in their perspective. And in fact we would all benefit from really thinking about how can we make things as, as easy to understand as we can.

Peta [00:19:37] Thank you for listening to this week's episode and a very special thank you to Professor Marion Saville and Professor Deborah Wrightson. Thank you for being so generous with your time and being willing to speak with me on this very important topic. If you enjoyed this episode of the podcast, can I encourage you to leave a writing in review? If you listen on Apple Podcasts or follow the show on whatever podcasting platform you're listening on, it all helps more people find the podcast. So until next week. Have a good one, guys. Bye.


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