Optimising cervical screening for people with disability

Imogen Gregory 

Well, good evening, everyone, and welcome to tonight's webinar optimising cervical screening for people with disability supporting equity in your practice. My name's Imogen Gregory. I'm the Education and Events officer for the specific interest faculty. And I'm really delighted to welcome you all online this evening. I'd like to thank our partners for tonight's Webinar, the Daffodil Centre, which is a joint venture between the University of Sydney and Cancer Council, New South Wales, and also the Centre for Disability Studies.

A couple of quick housekeeping items from me before we begin; so tonight, please use the Q&A box for any questions that you may have as the chat function has been disabled. A recording of this webinar will be made available on the RACGP website in the coming days, and if you're an RACGP member. Your 1.5 hours of education activity CPD will be uploaded for you within the next 14 days. You do have the option to generate closed captions this evening. There's a little closed captions button at the bottom of your screen, so you can turn them on and off via that button. Once you've got them on, you can also click into the settings and change the colour and the size of the text if you need to as well.

I'm really delighted to welcome our presenters for this evening. So we're joined by Trisha Malowney, who brings her life experience with polio and post-polio syndrome to her many faceted and constant works on behalf of women with disabilities, and Trisha is the former chair of the Board of Women with Disabilities. We're also joined by Doctor Lara Roeske. Lara is a GP and practice owner. She's Chair of the RACGP Board of Directors and of the RACGP Specific Interests Faculty. Lara is a member of the Australian Commission on Safety and Quality in Healthcare Survival screening, redrafting, working group and ministerial Advisory Committee on Blood-borne viruses and sexually transmissible infections. And also we'd love to welcome Professor Deborah Bateson, who is Professor of Practice at the Daffodil Centre and former medical director of family planning New South Wales. Deborah is leading an NHMRC study to increase cervical screening for people with intellectual disability, and she is deputy chair of the National Cervical Screening Program Clinical Advisory Group.

I'd now like to hand over to Lara for tonight's acknowledgement and to run us through the learning outcomes. So thank you so much, Lara.

Dr Lara Roeske

Thank you very much, Imogen. I'd like to acknowledge the traditional owners and custodians of the lands on which each of us joining tonight's meeting. I'd like to recognize their continuing connection to land water and culture, and pay our respects to elders, past, present, and future, and extend a warm welcome and acknowledgement to Aboriginal and Torres Strait Islander participants for tonight's webinar.

We'll now take a look at the learning outcomes. So tonight we will be discussing Australia's national Strategy for the elimination of cervical cancer. And we'll cover off the implications for people with a disability. We're going to identify the barriers and facilitators to cervical screening for people with disability. And we're going to promote strategies, to facilitate cervical screening, including self collection in people with disability. So I'd now like to hand over to Deb.

Prof Deborah Bateson

Thank you very much, Lara, and thank you, Imogen, as well, and it's a delight to be here with you all this evening. So thank you so much. I'd also just like to thank the Department of Health and Aged Care as well, who are also sponsoring this evening, too. So we've got a wonderful time ahead of us, and I'm going to get kicking off now by just setting the scene. And, as you can see, it's a sober scene because 'one woman dies of cervical cancer every 2 minutes across the world. Each one is a tragedy, but we can prevent it'. So this is Doctor Tedros Gabrieles. We will recognize him now after Covid, perhaps, where he's the Director General of the World Health Organization, and in May 2018 he had a call to action around the globe; so cervical cancer is a non-communicable disease we can overcome.

So let's have a look at this global strategy. So we've actually got since the shift - and it started really way back in the late 1970s - we suddenly understood that cervical cancer is caused almost universally caused by the human papilloma virus, and that's meant we've been able to develop the tools and the technology to eliminate cervical cancer everywhere in the world within the next 100 years. And this is a global elimination strategy. These are ambitious targets for many countries I have to say, to reach by 2030, and just to say, elimination is not eradication. It's fewer than 4 cases of cervical cancer per 100,000 woman-years. And these 2030 targets are 90% of girls fully vaccinated by the age of 15, with the HPV vaccine, 70% of women screened at least twice in their lifetime, at 35 and 45, with an HPV test, and 90% of women identified with cervical disease, treated either for precancerous lesions or invasive care. And so the world has committed to eliminated cancer. And this is the global strategy here.

So let's have a look at Australia, because we are actually on track to be one of the first countries to eliminate cervical cancer by as early as 2035, and just last year the Assistant Minister for Health, Jed Carney, launched the National Strategy for the Elimination of Cervical Cancer in Australia. The key thing here is that we're really focusing on priority populations, populations who we know can be under screened. We must make sure no one's left behind. But just to cap on how we've got to this enviable position. So this is through our vaccination program. It started for girls in 2007, and boys were added into the HPV vaccine scheme in 2013.  We shifted from a four-valent vaccine to a nine-valent vaccine covers 9 different types of HPV and that was in 2018. And then a big change at the beginning of last year when we changed, on the recommendations of the World Health Organization, to a single dose which is really great, because it means that once someone's had one dose, they've actually completed the course.

We also had the big shift. You'll all remember it from pap smears to HPV tests at the end of 2017 - that was a major policy change. As you'll see, we also have had that major policy change to support self-collection, universal self-collection. In 2022 the screening program is supported by the National Cancer Screening Register, and we'll hear more about that. But, as I said, the key focus now is to ensure that we're not leaving anyone behind, that we have got equity when we're reaching elimination, and that includes people with disability.

And I'm going to hand to you now, Tricia, to talk about upholding the health rights of people with disability.

Tricia Malowney

Thank you. People with disabilities have the same rights as everybody else in all fields of love and health is no different, and we do know that some people do miss out. And so for us it's absolutely essential that we do make sure that women and all the girls with disabilities for a start, get access to the HPV vaccination that they get absolutely 1st class access to screening, including self-collection. And then, if they are diagnosed with a cancer that they get the trick, the trait treatment that they need to get rid of the cancer, if possible. The highest level of care is essential. But at the same time we need to make sure that people have the right to autonomy, and it's often not understood that people do understand in the most part what is happening to them, and they can give informed consent under certain circumstances, and I'm sure that many of you know this even as well as I do so thank you.

Prof Deborah Bateson

Thanks so much, Trisha, so important. And thank you, for you know just your voice. There, it's marvellous to have you presenting tonight. And I'm going to hand to you again, really, Tricia, around the impact of disability on healthcare access and utilisation.

Tricia Malowney

Yes, certainly.  Approximately 4.4 million people have some form of disability, and it's probably higher than that if you include neurodiversity within that, which also has some implications for people's ability to access healthcare. So it's essential that we do include them. And with 450,000 people having an intellectual disability. It's really important that we understand how we can support them, to be able to participate in the healthcare and to utilize the same things that everybody else is able to utilize.

Prof Deborah Bateson

Thanks, Tricia, and here we've got a picture really around the Royal Commission into Violence, Abuse, Neglect, and Exploitation of people with disability. And we really know that that people with disability there are really very high rates of sexual trauma and sexual abuse, which is very relevant of course, when it comes to cervical screening, for a variety of reasons.

Tricia Malowney

And certainly there's a high level of sexual abuse of women with disabilities. And they they're estimating that 95% of women with intellectual disabilities have had some form of sexual abuse over their lifetime. Jane, whose photograph here is a friend of mine, and it's interesting to hear her story of institutionalization which also really impacts on women's ability to give informed consent easily or to participate without having their trauma relived. And that's what we've really got to keep at the back of our mind.

Prof Deborah Bateson

Thanks so much Tricia. And you know, available data - and we don't have good data yet but hopefully, we're going to have it soon because of data linkage with the census and other large data sets with screening - but available data does suggest very low rates of screening for people with disability we know as low as 30%, for instance, or even lower. One of the last studies in Australia showed a screening rate for people with intellectual disability as low as 10%. And what we know, of course, is that for people who are diagnosed with invasive cancer, almost 75% of those people are under or never screened. So we've really got to overcome these barriers to screening. Tricia's talked about those very high rates of sexual assault, sexual trauma which can be a barrier, of course, to screening, particularly with a speculum. But of course, we also know that that means that people are exposed to HPV and do need screening. So that's what tonight really is all about. It's overcoming these barriers.

So I'm going to hand now to you, Lara, and I know you'll talk together with Tricia around the barriers to cervical screening for people with disability.

Dr Lara Roeske

Thanks very much, Deb. Look, I might start from the outset and say that GPs, together with the members of the practice team in which they work, have been shown to be very effective in increasing participation in screening programs in Australia. And we have convincing data to show that.

We also know that people living with disability are the largest, and I don't like the use of this word, but the largest minority group globally. So putting those two facts and figures together, we know that all clinicians online tonight - GPs, practice nurses - will have people living with the disability coming into their practices and I think it's very important that before we go any further we put our patient at the very centre of the discussion tonight. We ask Trish to talk to us about what are the barriers that Trish people might experience when they come into general practice, or a clinical setting in primary care.

Tricia Malowney

Well, some of them find it extremely scary, especially if they come in without having somebody explain what's going to happen to them. So sometimes family members are reluctant to have the conversations, and then when they get in there, they find that they're having a speculum inserted, and they freak out to be quite honest with you. They don't want to be touched. There are others too who really overprotect the person with a disability. Don't allow them to speak for themselves, don't allow the GP to explain what's happening, and will answer the questions instead of the person with the disability. We have some things around parents, for example; some parents assume that people don't need to have screening because they assume that they're not sexually active and we can never assume that somebody is sexually active given the fact that there is so much sexual abuse within the intellectual disability community.

Sometimes we don't have the information or a way of explaining in simple terms - you know, we all tend to get technical - and we need to be able to explain things in a way that's not scary, but it's easily understood and just take it slowly. Sometimes you might need to give a longer appointment because that's just helpful. And sometimes even the GPs lack that confidence in speaking to a person with a disability. As you've said, Lara, the GPs in this room probably all have people with disabilities in their practice, and so probably well experienced, but others do not. And there's a societal thing around, there's a stigma attached to disability, that sometimes that can be a bit scary for people with disability, because they feel that they're not really well accepted by society.

Dr Lara Roeske

Thanks, Trisha. I think that's a really good point, too, around the training and the education that GPs receive in this space, and certainly part of the RACGP submission into the Royal Commission also resulted in an identification that we do need to improve our training and education. Not just GPs, but everyone that GPs works with in the clinic. One of the things that might be of interest to those online tonight is, we certainly do have a Disability Specific Interest Group and that would be a great place for GPs who want to be surrounded by colleagues that are committed to providing high quality, healthcare, provision, and collegiality around this, might consider joining that that group. Over to you, Deb.

Prof Deborah Bateson

No thanks so much, Laura and Tricia for this, and I was just looking here around the health systems and just that lack of accessible information, but also invitations. I mean, you will have seen the invitations, and then it's been great work done in trying in making them in plain English, but they can still be inaccessible for people with disabilities. So there is going to be work going on to improve this. So there's a real focus, which is fantastic, by the government in really ensuring that we do look across the board at how we can support people coming in for screening. So thank you both.

So this is what we call a body map. This is part of the research project that I'm got the privilege to lead, which includes the chief investigator with intellectual disability. It's called Screen Equal and we're co-producing resources for people with intellectual disability, their families and support people as well as healthcare providers to support trauma-informed care.

This is to overcome power imbalances between researchers and the participants. So, instead of doing a qualitative interview, the people are invited to draw or write in an outline of their body about their experience, and this is about cervical screening. This is just from last year you can probably read some of this. It's quite disturbing. Sometimes, as a practitioner; ‘the process was painful’. ‘the doctor says, open your legs wider and wider’, ’It was uncomfortable’, ‘It hurt too much’, ‘The doctor got mad at me for not following instructions’, ‘I told the doctor to stop’, ‘It hurt’, ‘I will not see her again for another go’, and ‘I cried, after seeing the doctor’. So it's just, you know, these are really quite moving. And obviously, you know, there is a way to go. I know I will see everyone here is going to be practicing trauma-informed care, Trisha. I just wanted to draw on you whether you thought this was surprising or not.

Tricia Malowney

I’ve sat in doctor surgeries and seen somebody with the disability come in and they were find and had support workers, and as soon as they get into the doctor’s rooms and they see the bed they start yelling and it's traumatic, because they just think, ‘Oh, no here we go again’. It's a reason why people don't come back for another screening, because it's been just too traumatic. People think that they're being overdramatic, or they're just putting it on. But people are actually terrified because they've had something happened to them in the past, or just generally hurts. I mean, it's not the most comfortable thing to have a speculum inserted. 

Prof Deborah Bateson

Yes, we've got the new option of self-collection. So that's but let's come to that. But thank you, Trisha, for commenting there, that's really important. I'm going to hand to you here actually, just around supporting, screening for people with disability around supporting decision-making. And, as you said before, about being in control of their own lives. So over to you with this one.

Tricia Malowney

Absolutely. We've changed as a society to how we used to consider people with intellectual disability. Now we understand that with the right supports, people can make a decision about their own lives. So we need to make sure that they are making the decisions and not somebody else. So it's not the parent saying, no, they don't need it, but rather the person with the disabilities making the decision as to whether they have their screening, and it is the right of every person to have decision-making in their own lives, and certainly the Office of the Public Advocate in Victoria has been doing some great work on ensuring the voices of people with disabilities are heard that it's their story, not somebody else telling their story. All of the people in this room understand the legal status of consent, to treatment, and substituted decision making. I'm not going to tell you how to do your jobs, but just be aware not to make assumptions about people's ability to advocate on their own behalf and to make a decision about their own body.

Prof Deborah Bateson

Thanks so much. Trisha. Lara, do you want to add anything here?

Dr Lara Roeske

I think in for most of us we would document, and I think it is really important to document that verbal consent for CST or CST-SC – they’re the acronyms we resort to when we're in a rush - has been obtained or given. There's no need to fill out forms or anything like that, but I think we do need to at least tick off that the person that we've been talking to about cervical screening or self-collection, understands why they would be benefiting, or what it is to gain from self-collection for them, and understands any potential side effects or adverse events.

I think, we can certainly do that in many ways across many other discussions we have in general practice. It is really important to ensure that we do - and I would suggest you do - document that the option of self-collection was explained, and including follow up, discuss any potential concerns the patient may have and perhaps document, I often document patient degrees, or something along those lines. So usually it should be straightforward. I probably would also suggest that if there, if you do have a concern around substituted decision making there's no reason to go ahead at this consultation. I would suggest that you might need to take some time to either make a couple of phone calls, certainly to your State jurisdiction, or your own if you’re particularly concerned your medico legal advisor as well, your MDO.

Prof Deborah Bateson

Thanks so much, Lara. So I'm going to again hand this slide to both of you. It's around how to optimise care. We've talked about barriers. But what about optimising care? So over to you over to you both.

Dr Lara Roeske

Thank you, Trish. Are you happy for me to kick off? 

Tricia Malowney

Absolutely. You go ahead.

Dr Lara Roeske

I'm just going speak pretty plainly, actually, with the with the GPs and the clinicians here tonight, and I think my overarching message is slow down which is exactly the opposite to what we do most of the time when we're in clinical practice. I mean that in a number of formats. The first thing is, we do need more time without patients who are living with disability. So the first thing is find and offer the optimal appointment times, and that isn't at the end of the day. So late mornings, early afternoons, a time that's reasonable and understands that people can take a bit longer to get organised in the morning, organize, transport, and get to you. So the first off appointment isn't necessarily the optimal one, either.

When you're actually in the con consulting room. You may be feeling a little bit anxious and uncomfortable yourself about this so my advice is, don't feel that you need to nail it. At this consultation, and particularly with patients who perhaps have been traumatised or a fearful, or perhaps there are communication barriers, or a 3rd person in the room, maybe it's about everyone getting to know each other, and getting comfortable and having a conversation that's then followed up at a subsequent appointment. Remember, we do have the opportunity to book subsequent appointments and offer them. 

I also think part of really good communication here is not communicating in the way that you're used to communicating but actually slowing right down and listening and giving time for responses. We always need to judge the appropriate health literacy level that we need to be speaking with our patients and just being very sensitive to that. I won't talk about the concepts of simpler language, avoiding medical jargon checking on understanding.

I think also it's important to consider the use of models or a diagram or even. I mean, I don't know if you can see  it, but I don't go anywhere without that red top swab,  so again the sorts of tools that you might have available to you to support the information sharing,

This appointment often will be about managing a third person in the room and I think Trish spoke really well around how that third person might not be an enabler, but a barrier. And I think it's really important for the GP or the clinician to take control and ensure that that third person is contributing appropriately. Remember, the third person is not a chaperone, and does not fit the criteria of a chaperone, and don't get confused about that.

So I think at this stage I'll see if you've got anything to add about optimising that environment - I'm sure you might Trish.

Tricia Malowney

Just a couple of little things, because you've just about done it all which is great.

Break the language into small places, and don't assume that the person doesn't already have some level of understanding.

Use correct terms for body parts. They're not children, they may have a different way of understanding, but they do understand body parts, and I think your idea of a of a diagram is a great one.

And the other thing I would add is talk to the person in the room, not to the person next to them. People make this mistake. Even if the other person answers, keep looking at the person you're talking to, because sometimes you can see by their body language, whether they agree or not.

And don't forget that people with disabilities have been taught to be subservient to institutionalisation sometimes they may be afraid to say ‘yes’ if the person in the room with them has said, ‘No’. 

If you've got time, try to see them alone for part of the consultation but don't think you have to. Sometimes the greatest supporters are the support workers and the family members.

Dr Lara Roeske

Thank you, Trish, and back to you, Deb.

Prof Deborah Bateson

That's a great overview of all that we can do to optimise care. So thank you. So I'm now going to turn to self-collection, and we'll just have a little look at this, just a refresher. So, as you all remember, this came in in July of 2022 and it really is a bit of a game-changer in terms of bringing people into the program who may otherwise not be screened. So that's a great thing.

The key thing is HPV testing. There's still some misperceptions we know amongst the community, but also amongst healthcare providers about the equivalent accuracy;  a sensitivity of a self-collected test from the vagina compared to a clinician collected test from the cervix. It was in 2018, in fact, where a pivotal study came out; it was an updated meta-analysis looking at all the studies, and it confirmed that, in fact, there is that equivalent accuracy when it's using a PCR test. And all the tests in Australia are PCR tests. So don't think that this is less accurate. So that's the first thing.

Now who can have a cervical, self-collected test? Well, anyone eligible for screening should be offered the choice between clinician collection and self-collection. There’s still that choice, of course. So that's anyone aged between 25 and 74 with a cervix. Obviously, that's inclusive of trans people with a cervix and gender fluid people.

And it's anyone who's had any type of sexual contact. Now, HPV is extremely transmissible, so it doesn't just mean penetrative intercourse. This also means oral sex, intimate genital contact, foreplay for instance, but also of course, as we talked about before, it can also mean non-consensual sexual activity as well.

So who can't have a self-collection? Well, that's actually anyone who needs a co-test. But we've also got other places in the pathway where self-collection is a very useful way forward. And that's for people, as we'll see soon on the intermediate risk pathway. People who have non 16/18 HPV results with a negative or a low grade cytology results. So we'll have a look at them. But anyone who needs a co-test can't have self-collection because a co-test is where the lab automatically looks tests for HPV and on the same sample they test for cytology. Now, with a self-collected sample, it can only test for HPV, not for cytology. So if someone's got symptoms, for instance, that needs a co-test, it can't be self-collected. So that's just an important component.

Self-collection detects oncogenic HPV DNA, and we've got partial genotyping so that means we can tell whether we've got a type 16/18 or 18 HPV type - these are the most oncogenic types, the types of HPV which are less likely to clear from the body, more likely to progress and more likely to go on to develop into cancer 10, 15 years down the track. Now most, of course, will clear, but it determines our pathways.

And then it also detects the non 16/18 - they're much more likely to clear, less likely to go on to develop it into cancer. Whereas type 16 is a unique carcinogen. In fact, type 16 is the type of HPV that's associated with most cancers around the world. And 18 comes after that. As I've said the self-collected sample can't be used to detect cell changes.

We follow a traffic light traffic light process, of course, and we divide test results into low risk, high risk and intermediate risk. So let's have a look at the self-collection pathways. The majority of patients that come along for routine screening are going to have no oncogenic HPV detected. It's over 90%. and we know there's a very high negative predictive value. It's safe for them to go away and return in 5 years, unless, of course, they have any symptoms which, in which case is suggestive of a cervical cancer and they need to come back to see you. But low risk come back in 5 years with self-collected test. They don't need to come back to see you for a cytology test.

 

What about the higher risk groups? So this is where HPV 16 and/or 18 is detected. Well, these people are at higher risk of cervical cancer or having a pre-cancer. So what happens with this group is, again, if it's self-collected, they don't need to come back to you for cytology. If it’s clinician collected, the lab will perform reflex liquid based cytology. But the key thing is that for anyone who presents and has a higher risk result – that's around about 2% of the people who turn up for routine screening - they're referred for colposcopy so that's important.

And then there's the group in the middle, and this is where the pathways are a little bit different for clinician versus self-collection. So this is where, on the self-collected sample, HPV not 16/18 is detected. This occurs for about 6% of patients overall who present for routine screening. It's actually higher in younger people and lower in older people. That's because younger people are more likely to contract HPV, as you know. But the key thing is that you actually haven't got a risk rating until that cytology has been performed. If it was a clinician collected sample, then the lab would automatically, if any oncogenic HPV is detected, the lab automatically carries out that cytology on the same sample. But that can't happen on a self-collected sample. So in fact, for that patient it's really important when you're explaining about self-collection, that this is a possibility that if someone has this not 16/18, they do need to come back to you, or someone in your practice, to have the liquid based cytology performed. That does mean a speculum examination, because the risk isn't determined until that's happened, because this person could come back, they've got not 16/18, but they could, for instance, have a high grade or a possible high grade cytology result, in which case they'd have to go for colposcopy. But if they've got a negative or a low grade, or a possible low grade cytology result then we know it's safe to watch them for another year.

And this is, you've probably all seen this, It’s quite bamboozling. Just to say, we're updating the guidelines. They're going to be coming out later this year with all the new evidence. There are some changes, but the key thing is, we've brought all these flow charts together. We've got a special chapter for primary care aimed at GPSs and nurses, so, making them much easier to navigate.

Just to go over this very quickly, we've got the traffic lights again. So on the left hand side - this combines clinician and self-collection - if HPV is not detected, come back in 5 years. Routine, 5 yearly screening.

If on the right side there's 16 or 18, the highly oncogenic types detected, there’s either reflex liquid based cytology at the on the same sample and those people are referred for colposcopy, and if it's self-collected then at the colposcopy appointment that cytology will be performed.

It's the group in the middle there, not 16/18, If it's self-collected they have to come back to see you for the cytology test to inform the risk. If it's intermediate risk, then they're safe to watch for another 12 months, and then you can repeat the HPV test - that could be self-collected again - in those 12 months. And again, if it's HPV not 16/18, detected for most people we know it's safe, and they've got negative or low grade cytology, it's safe for them to be watched for another year. If it's persistent 24 months after their first screening test, then they're referred for colposcopy.

There are a few groups - women are over 50 or more, Aboriginal or Torres Strait Islander women, or those who are overdue for their initial screening - they, if they have persistent not 16/18, regardless of cytology at that 12 month, follow up, they're referred for colposcopy.

And I just wanted to show this. This is really heartening. This is what's happened. You can see where you see the line going right up. That's when that was when universal self-collection was introduced. And you can see now, in fact, we're further on than this now. But so over 30% of all screening tests are self-collected. And it's reaching the people we need to reach. It's under screen people, people in remote areas, Aboriginal and Torres Strait Islander women and actually, interestingly, women over 70. We're still not attracting as many of the 25 year olds as we need to by the way, so that's just something for to think about. 

Trisha, what do you think about these self-collected figures? Does that surprise you?

Tricia Malowney

No, not at all and I know in my community we've been hanging out for the self-collection because it makes their life so much easier. Unfortunately, I'm one of those ones who are HPV positive, not 16/18, so I keep having to come back for the speculum, which is really annoying, because I was really looking forward to not having to do that, but that's the way it is. And my whole family all come back each time as HPV not 16/19 so I don't know what the glitch is there, but definitely many people are really, really happy, and are happy to do self-collection.

Prof Deborah Bateson

Fantastic. It really is a game changer, as you say. So thank you for that.

Now we're going to just introduce you now to Lisa. She's 34, with an intellectual disability, and she attends with a support worker for a checkup. We look up her screening history through the NCSR provider portal, and I'll hand to Lara in a minute about the register, but what we find out is that Lisa's only had one prior cervical screening test. It was negative. It was 10 years ago. She's not sure whether she's received invitations to rescreen or not, and, in fact, in this situation the support worker does talk for Lisa and talks over Lisa, and it's clear that Lisa actually does want to be seen alone. You ask if she wants to be seen alone, and she does disclose prior sexual assault and tells you her last screening experience was actually traumatic.

So you feel confident to manage this situation because of a recent update on trauma-informed practice. But before we go to that, I just thought I'd turn to you Lara if there's anything around the register, and how useful the register is. I know that you can connect through your medical software now.

Dr Lara Roeske

Yeah, thanks. Deb. I think there's been a great sort of improvement in the last year or two in terms of accessibility for GPs and practice nurses, around the National Cancer Screening Register, which, of course, houses data both for the national cervical and bowel screening programs.

I think now, we are able to do what we need to do, which is access real-time information during a consultation or just prior. We know that's what the consultation is going to be about. It really is quite quick. We do that through having set-up access, and if you haven't got access set up, your practice manager or practice nurse should be able to talk you through the steps. And then it's really just a click of a couple of buttons, and what you have before you is the sort of information that you need at hand to actually glide your own clinical decision-making in terms of either the sort of test that a patient may be due for and you'll be able to work out or confirm the previous screening history, or anything relevant that might actually mean that today's this patient's not, in fact, eligible for self-collection, and they're eligible for another type of test or follow up process. So I'd encourage everyone to find their own screening results on there for a start. Have a bit of a practice, and just really start to incorporate it into your everyday clinical practice. Get comfortable with it, use it. I think it is important to be across the screening history of any patient that you're offering and supporting self-collection, or the or the clinician collected pathway to because it informs clinician decision-making around what's the best next step. 

Prof Deborah Bateson

Let's come to trauma-informed practice which seeks to address the barriers that people affected by trauma can experience when accessing healthcare and certain care services, and we know we can't make any assumptions. We have to think that maybe any patient that's sitting before us has been affected by trauma, and the aim of trauma-informed practice is to minimise the risk of re-trauma and Trisha, I know you are going to talk to us a little bit about this. 

Tricia Malowney

We know that there are many women with disabilities, and particularly intellectual disabilities, who have been traumatised by sexual assault, at whatever level that that means, and we know that sexual assault or the trauma from sexual assault varies from woman to woman. But when you have never had the chance to say anything, you've never had the chance to disclose, or if you have and nobody's ever believed you, then it can be quite difficult to then come into a doctor's surgery and have somebody want to touch you and keep in mind that the people who have sexually abused these people are generally people that they're supposed to be trusting. So sometimes it's support workers, sometimes it's other family members. So I think we just need to keep that in mind whenever we have any disclosures, and I'm sure that any of you who have done any family violence training will understand this, and the training that you've received through the family violence training will hold you in good stead for this.

Prof Deborah Bateson

No thanks so much, Trisha and you're right, it's what we all practice all the time, just checking in with the patient, explaining each step, and importantly, you know, saying that that this you can stop at any time, so I think that's really important. As you said before, Lara, it may take a few consultations to reach a place where someone is wanting to go ahead with self-collection. But over to you, Lara, just around trauma-informed care.

Dr Lara Roeske

Look. I think particularly in general practice. We've realised that this is really an emerging and an important area for us to skill up in, and I would argue that we're not going to be able to do it justice here in tonight's webinar, but what we will do at the end is Imogen will talk to us about some of the resources the RACGP has in place for GPs. But I do want highlight again, that we have two Specific Interest groups; the Abuse and Violence in Families Specific Interest group, which there are thousands of GPs who have joined that group, and also the Psychological Medicine group, and our SIGs have collaborated and produced some very helpful one-hour on demand webinars that cover off trauma-informed practice and I would commend you, if you've got an interest in it, certainly you'll get your CPD points, and you can find those on demand webinars if you go into the CPD portal using your app. 

Prof Deborah Bateson

Thank you. Lara. So we do take Lisa's history and she does. We explicitly asked about whether she's got any symptoms that could be suggestive of cervical cancer. And I will stress that this is particularly important when you're offering self-collection, it's not just a matter of saying, ‘here's a self-collected swab’ - I've got one too, in my handbag - it does have to be accompanied by history, because if someone has got persistent postal bleeding or unexplained inter-menstrual bleeding post-menopausal bleeding, we've got to be able to elicit that, because a patient doesn't know that they can't have a screening test of course, they'll of course say, ‘yes I'll have a self-collected test’ if offered, if that's what they want to do. But you must elicit that history, because often these people may be with disability, may be very under-screened, they may not have had screening for many years, and that does increase their risk of being one of those numbers of people who do develop cervical cancer. So do take that that history.

But I'm going to go now to say Lisa decides she wants a cervical screening test. She hasn't got any symptoms suggestive of cervical cancer. So, Lara, talk us through this, this consultation, and what you would do.

Dr Lara Roeske

Thank you, Deb. I'll invite you to join me too to make sure we cover everything off. But look, the first point I want to make is there's actually been a paradigm shift, I think, in the way a GP should be approaching this type of consultation, and I'm going to speak about it in general terms, and obviously try to be considered an inclusive of our patients who may be living with disability.

What we should be doing at the outset is offering choice. There's no longer room for us to be making an assumption that we're going to be inserting a speculum and going down that pathway and this is in line with the with the National Cervical Screening Program Guide now, which is compelling evidence to show that self-collection is as accurate as clinician collected and also it's highly acceptable. So it's exciting, because we can develop now a real partnership with our patients and actually offer them the choice and take them through these options, and really then support a preference, bearing in mind, of course, the history, and also the cervical screening history should have bearing on what is an appropriate choice. So it's important that we explore that with our patients.

I'm going to talk specifically about supporting self-collection and I think what we need to do again is ensure that we have everything at hand to support a consultation. What do I mean by that? I think it's really important that we do show people at the swab. And not only that, we take time to explain how they would actually perform the test themselves. So, Deb, and I have shown you the swab, and I will make it a routine part of my consultation to actually show people the swab. I'll actually open up the swab and actually show them how to unscrew the swab. Don't assume that everyone's got the strength to open up that swab actually. So once you've opened the swab, and I've got mine open here, I do point out to patients that there's a soft tip which should feel soft and comfortable when it's used properly. I think it's really important to take away fear and provide some reassurance around comfort. I think it's really important to explain how one would hold the swap, and where, in fact, this test would occur. We need to think about a place that supports privacy and dignity. One of those places could be the bathroom, or it might be behind the curtain in your room. You can support this through telehealth as well, so it might be in the patient’s own home, or it could be as part of visiting a residential setting. So you need to think about where this is going to happen.

You should give very clear, specific instructions around preparing to take the test. So people need to understand that they'll have a private place. They'll need to remove their underwear, for example, and it's so important that people understand their anatomy as well, so don't assume. Unfortunately, we talk about trauma and pain - we had a patient last week, who, despite our best efforts, swabbed their urethra and returned in pain, quite distressed - so, even though self-collection is there to offer the opportunity for a more dignified, respectful process, it too, can cause trauma so, perhaps understanding the level of a person's comfort with their own anatomy. Understanding where the vagina is and being able to locate it.

I would often give very specific instructions about how far the swap needs to be inserted. Explaining to them that it's a sample that's taken from the vagina. They don't need to actually sample from the cervix. Some women think they do in fact. It needs to be rotated at least two to three times so that an adequate sample is taken. I'd actually talk to them about how to return the swab, how to place it back into the holder. And then timely return of the swab is important so certainly we don't want swabs to go missing or lost, and I think that's one of the important reasons why there's a strong preference for this to occur in the clinical setting. And explaining that the swab comes back to you, or it's dropped off at the front desk. I sign off all swabs even when they dropped off at the front desk. I'll ensure that I've cited it in the collection box, and I've signed it off, and it's my responsibility to ensure that that swap gets to the lab on time and is interpreted. You should also check throughout all of this, that that the patient is following those instructions, and is happy and understands. Deborah might go to you then.

Prof Deborah Bateson:

I think you've explained everything. I think the one thing that is important as well is to ensure that that person does have an understanding of what will happen with the result when the results come back. So if it's negative, another 5 years, if it's 16/18 - it can be quite complex to explain of course, and we're actually working with putting things into easy read at the moment for people with intellectual disability - to colposcopy, and that there is that chance. So for both of those, the majority of people won't have to come back to you for cytology test but there is that 6% - and it may be higher for people that haven't had screening for a long time or ever - will need to come back for that cytology test.

I think it leads me really nicely to the next slide. Well, Lisa chooses self-collection, but she's worried about taking a sample herself, and that can be for a variety of reasons. That can be people who can't take it themselves, they may have a tremor for instance, or just a physical disability that precludes them. But they could also just be lacking confidence around their anatomy and feel worried, really worried about it, so that person must know that they can actually ask you to assist them with taking that sample. So, Lara, do you want to talk us through that?

Dr Lara Roeske

Yes, absolutely thanks, Deb, and look, a range of patients may express this. As Deb's described, they’re some of the reasons and we also have low vision patients, we have patients with Parkinsonian tremors, we have patients with quite significant arthritis or hip arthritis, and I think we have a range of patients who actually just don't feel comfortable performing that sort of sampling and their preferences that you take it. There's no problem with the with the GP or the practice nurse assisting with this. Essentially, you should make sure that you just label the swab is self-collected - there's no need to write clinician assistant, or you know ‘I helped’, or anything like that. It will still be treated as a self-collection by the laboratory. 

Prof Deborah Bateson

So with Lisa's consent, you do take the vaginal sample for HPV testing, and we're good to just come to a little bit around the lab now and over you over to you, Lara.

Dr Lara Roeske

it's quite important that clinics that want to be offering this option proactively, regularly, and, in fact routinely, for all cervical screening and need to have a really good relationship with their lab. Often GPs are busy, and it might be the practice nurse or the practice manager that needs to ensure that the whole clinic, is well equipped with the correct sampling devices. There are currently two options in terms of taking an accurate, valid sample. One is the red top dry swap which we can see on the slide. It's the first picture there. It's the one Deb and I hold dearly in our purses and on our desks. We like it, cause it's one step. That sample needs to be back in the lab within 28 days of the time that it's taken and it's a one sample device, and it's safe to use as well in pregnant women. The other option, and different labs support different testing platforms. So your local lab will either do one or the other. The other is the sample is taken with the swap, but then needs to be swelled for about 20 seconds through a thin prep vial. The time between when the sample is taken to when it needs to be inserted into the vial and swelled through and then discarded is probably no longer than a few hours. It's not a overnight job where you can swirl it through the next day. That is the preference of the lab and to maintain that accuracy. Your local lab will have a preferred testing platform, and they will supply you - and please ensure that these sampling devices are in your room not a long way down the corridor and then a disincentive for you to support self-collection because you just don't have time to get down the corridor and find samples -please ensure you know which platform you're using and then your lab will either be processing these tests themselves. So, for example, here in Victoria, VCS will process the red flocked swab. Some labs will send on for processing, and I think it's important that you know what your local lab can and can't do, and that's as simple as a as a conversation. Please label the sample. I often use CST-SC, which is cervical screening test self-collection, and generally I'll tick the box ‘self-collection’ on the request form as well.

Prof Deborah Bateson

I'll add in, if you like, it's really important to ask. Don't make assumptions about whether people have Aboriginal or Torres Strait Islander status or background. Do ask and do record it and the reason for that is not just because it's really important that we've got that identification so we can understand what's happening with this population - we know that Aboriginal and Torres Strait Islander people really want us to ask and it's also because it does impact on the clinical management. If you remember, back to the intermediate risk pathway, if someone has persistent non 16/18 at 12 months rather than waiting another year, this group, plus people age 50 and above, and those who are overdue for screening, they actually are referred to colposcopy straight away rather than waiting for another 12 months. So that's just important to understand.

So let's come back to Lisa. So Lisa's test comes back as HPV 16 detected and what do we do? So if you remember, that is one of the on highly oncogenic types. So let's have a think about what we do in that situation.

So of course, Lisa does actually need referral for colposcopy directly. She doesn't need to come back to you for the cytology, you will refer her to colposcopy. Let's have a look about supporting under-screen patients, because what we do know is that patients with HPV detected may require additional and individualised support to progress along the clinical pathway, to access follow up services, it may be through an Aboriginal Health Worker for instance, and just needing those extra appointments is really important. But you also may need to give that extra reassurance and explanation of the pathway and follow up procedures. 

Just come back to Lisa. I know I'm working with people with disability. I really want to get in touch with the Colposcopy service just to let them know so they're aware, and they may need additional adjustments made for their service. Lara, did you want to add anything to this around supporting under screen patients?

Dr Lara Roeske

I think what's important is for some of our patients that are under-screened we need to perhaps explore some of the barriers and some of the experiences that they bring. So for some it might be an experience of pain and discomfort, and certainly this is where self-collection is really important. For some it might be cultural barriers or embarrassment or fear. And again, self-collection really overcomes many of those barriers. For others, it's actually a health literacy issue. They've come from a place in the world where sometimes, actually, interestingly, I've had patients that are highly suspicious of systemised government initiatives and really don't want to actually necessarily engage with a program like this and you need to spend some time educating them about the fantastic screening program Australia does offer Australians. Religious barriers, sexual trauma we've talked about and abuse - really, really important. Unfortunately, just a previous negative experience with having cervical screening before. Preference for a female is really important as well, and preference for a chaperone or someone in the room. So again, there are so many ways in which we can adapt what we do to increase confidence and comfort. But again, I think for each of those scenarios that I've discussed self-collection just comes up trumps as overcoming many of those challenges and that's why – I mean in my practice it's the heart sink when you really know that someone would benefit from screening, because let's face it the game we're in is preventing cancer - so to be able to offer the opportunity is really great.

Prof Deborah Bateson

I think, as you say, it's so important to be able to offer that self-collection. But it is also recognising that for people who do have a not 16/18 result, for instance, they'll need to come back for a spectrum examination, and in Lisa's case HPV 16 is detected, so she will need that referral to a coloscopy. And what we do know from the available data is that we often lose people at that point, so that step to a coloscopy. It may be for factors of travel and cost but also it can be that great unknown about what colposcopy is, and people may have heard some negative experiences from others. And of course, if someone has a 16 or 18 detected they're referred for colposcopy, but they don't go you may as well not do the screening at all, of course. So because that's the important component, then to be able to the next step for that colposcopy, possibly a biopsy, and then treatment, if appropriate, for a precancerous lesion.

So Lisa does return with her support worker. We explain the result and we do actually give accessible information to take home. So do look at all the excellent resources on the NSCP website, and there's going to be more developed for people with disability as well. And we do organise another appointment to discuss a referral to a colposcopy service now, saying, we're referring you to a coloscopy service will mean nothing to most people, of course so you really do have to have those props available to you. There's some excellent wording on various Cancer Council websites, and how I would explain – and Trisha I'll be interested to know how you both do it - but is colposcopy is like a large magnifying glass. It is again taking a close look at the cervix’ So again, we're explaining what a speculum is, but taking a close look at the cervix, it is placing some liquid on the cervix which can show up any abnormal areas, but it is having that look at the cervix, and then some small samples may be taken to see what's happening, and whether that person does need treatment or not, Tricia how would you explain that?

Tricia Malowney

Well, I would have explained it just as you've done it. I would. say that if you're taking a small sample you might need to explain what that is  - and you do this all the time, so it should be easy for you to do it - that it's not as though you're going in there with a with a pickaxe and taking a large piece. It's just a very, very small little scrape, so that you've got some tissue to be tested. Even the word abnormal - to see if there's anything not right with it, and to fix it if it isn't right. To fix it is the way to do it.

Prof Deborah Bateson

Thank you. Excellent. I'm going to use that from now on. So to fix if it if it isn't right and you're right, it's about checking that things are healthy, but if then, if they're not, it's then fixing it. Lara, have you got anything to add in.

Lara Roeske

I think the real important message here is the way that we do that initial work with the patient when we're talking to them about self-collection, and that we actually work through the ramifications of a positive result. And I think that's what we call pre-test counselling. We do it for other testing where there is significance when a positive result comes back, and I think it's just taking the time to set that up. You don't want labour it to the point that you put people off actually engaging with the test so you need to be really careful. But I think you do need to reference either the follow up speculum exam - and the percentage, it’s not a lot of people as we know right Deb, and then even smaller number of people who might need a colposcopy. I think GPs do develop and have relationships with local colposcopy services. Now's the time to cash in that relationship. So do we need a support service there? Do we need a community worker there? How does the service actually work to support people with disabilities? What can you do to advocate on behalf of your patient? So they're all the things that are within the remit of a GP to actually smooth the way, and I love the fix it the simple fix it. Thank you. Trish.

Prof Deborah Bateson

I'm going to use that now. That's great. Well, look, we've come to our last slide. I'm conscious of time before we just wrap up and obviously we want time for all your questions.

So really, I think we've probably covered this, what if Lisa needs a clinician collected sample from the cervix? That might be because she has not 16/18 and needs to come back for that cytology test with you. And if she needs a co-test you've taken the history, and it might be for a variety of reasons, maybe she's got symptoms suggestive of cervical cancer and she needs that clinician collected sample. So that's explaining, again having your props, explaining what's going to happen. Tricia, I think you gave an excellent explanation of that last time I remember. How would you describe the speculum examination?

Tricia Malowney

It's just a way of opening it up so that they can have a look inside easily. So it's not too painful, it's just really uncomfortable, but it's fine.

Prof Deborah Bateson

Yes, that's right. And again, I think it's important to remember that there can be distraction techniques for people as well. So again, it's about taking it slowly, as Lara said, you're not rushing. You're explaining it every step, and you are saying, ‘I can stop any time if you want me to’. So that's important.

We’ve had a fantastic session. I'm just going to do some, take home messages and hand back to Imogen but do think about all your questions and put them in in the right place, so we can answer them all.

So Australia is on track to eliminate cervical cancer by 2035 but we mustn't leave anyone behind, including people with disability. We know cervical screening rates appear to be very low. And that's because of the multiple barriers we've heard explained so well. And GPs, of course, you play an essential role in supporting cervical screening for people with disability using that trauma-informed care approach and you've got lots of resources which we'll share with you after this, Self-collection of a vaginal sample can be a useful choice for this group and just remember that if a person requests it, then you, as the clinician or your practice nurse can take a vaginal sample. It's still classified, even if you've assisted, as self-collection because it's a vaginal sample, and that must be labelled. People with disability may need additional supports to progress along the pathway and to be referred for coloscopy, as we've heard, and there's lots of excellent resources to support your practice.

So I'm going to end there. I'm going to hand back to Imogen. So Imogen you're going to talk us through the next few slides. Thank you.

Imogen Gregory

Thank you, Deborah. So, you've just mentioned resources, and there are many. We've highlighted a few of them here, and all of these hyperlinks will be emailed across to you as well. So we do have the National Cervical Screening Program clinical practice guidelines and the provider toolkit. There's, of course, the National Cancer Screening Register quick start guide as well. 

There's also a really wonderful mini audit that's been developed by the RACGP on self-collection for cervical screening, and that's available to RACGP members via gplearning. It's not onerous. It's a really wonderful way to get those 7 CPD hours and of course, improve those outcomes for your patients. And so far we've had over 2,000 GPs enrolled into that which is really fantastic. So you can access that via gplearning. 

And earlier on there was discussion around trauma-informed practice, and these are just some of the resources that we've picked out for you. On demand. webinars that Lara has mentioned. There's the White Book Chapter 7, and the GPHMSC has got a really wonderful trauma-informed care resource hub as well as literature review on trauma-informed care and practice. I know we've talked about the Psychological Medicine and Abuse and Violence in Families Specific Interest groups, and you can become a member of either of those groups really easily online via quick online form, which I can direct everyone to in an email tomorrow as well. So I'll hand over to you, Deborah. Thank you.

Prof Deborah Bateson: 

We just like to invite your questions and acknowledge Dejan Krstik who’s the Director of the National Cervical Screening Program, colleagues at the Centre for Disability Studies and the Daffodil Centre.

I'm going to stop sharing my slides now and we can open up for questions. So I haven’t been able to see the questions I have to say so because I've had the slides on my computer. But I'm sure, Lara, you probably have.

Dr Lara Roeske

Yeah, look, we. We sort of have three questions on a similar theme, which is really around what happens in terms of Medicare, rebate or charge if people are presenting a little bit early or a little bit late, for the 5 year, and I think one of the participants, Tina, who I know well has pretty well given a fairly accurate response. But from my perspective. This is where your relationship with the lab is really important. People living with disability will have a whole lot of reasons why, that may be early or late. I pick up the phone and I ring up the lab and I say, ‘how can we make this work?’ The labs would have to work pretty strictly to, and they know the rules around how early and how late, and there is leeway there. But I often find this is the time, where that relationship can work really well, around minimising any unexpected charge to your patient, and I would suggest that if you’re unsure that you do want to mitigate a patient receiving an account and I would make a call to the lab, particularly when you know they're early, and it's probably more than just a couple of months early or a couple of months late. Either way, there's leeway.

Prof Deborah Bateson

The Medicare rules, as someone's correctly said, it's 3 months. I know. There was a little bit of a challenge at one point, because some of the letters seemed to go out a little bit early, and people, if they turned up on the very day they got their letter to say ‘come for your screening test’, they would have been charged for it. But you're absolutely right. There may be reasons why, obviously having that relationship with your lab to waive fees in appropriate circumstances is very clear. But again, just to say, this is where the access to the screening register is so important because you can see there and then, in real time, whether someone is due or not.

Dr Lara Roeske

Yes, and there isn't an advantage to extra tests in between the five year interval, when you've returned a negative result so we would strongly discourage that. It's really over servicing and it's not conferring benefit. 

Prof Deborah Bateson

That's right. So are there any other questions? 

Dr Lara Roeske

While people are thinking about questions, I do want to endorse that mini audit. It’s hard for GPs to get the reviewing points in the CPD and one of the advantages of self-collection that we perhaps haven't talked about is the fact that it brings our male GPs back into the fold. For many men, perhaps they weren't as keen to be involved in clinician collected sampling so self-collection makes it an even playing field now for all of us again. So welcome back male GPs.

And the other thing is, of course, our Environmental Medicine SIG, rightly pointed out that the less plastic speculums we use the better for the environment. And you'll find that the Mini audit does give you an opportunity to count up how many plastic specular you've actually saved using through promoting self-collection so I thought that that would just be some interesting points I could make tonight in supporting self-collection in practice.

Dr Lara Roeske

Now, I'm not sure we've got any further questions from the group.

Prof Deborah Bateson

Oh, there's one coming up. 

Dr Lara Roeske

Yeah, we usually get that question. It's a good one. So if someone's not being sexually active, do they need self-collection, or indeed cervical screening.

Prof Deborah Bateson

We have a very low, I mean, if someone has never had any sexual contact or any chance of that sexual transmission, it is a very highly transmissible infection, as you know, then no, they don't need cervical screening. But I think you need to have a very open mind I suppose and obviously you're not going to pressure anyone into having a cervical screening test so people need to actually have the option to have a cervical screening test or not. Prof Deborah Bateson: But there may be many situations, and Tricia I know you'll add into this, where people may be reluctant to disclose that they're sexually active, or they've had sexual trauma in the past. So I think it's really important not to make assumptions and I think if someone comes in to request cervical screening, obviously you're going to give it to them or offer it to them. But if they are age eligible, and you look up and they haven't had cervical screening, I think it's appropriate to offer it. We do know from the surveys in Australia about proportions of people who are sexually active by the age of 25 - it used to be 18 as you know but that's changed now - then that is a high proportion. But I think it's about making not assumptions. But if someone says I've never, ever had any sexual contact, then absolutely, they don't need to have a screening test. Tricia, would you like to add anything into that?

Tricia Malowney

Yeah, I would err on the side of caution, because there's a couple of reasons why women with disabilities don't disclose. Because they've been threatened with violence if they do, so that’s one thing. They're ashamed because they think it's their fault so they don't disclose, and sometimes they don't even know that they've been sexually abused. Sometimes the only way we find out that women with disabilities have been sexually abused is when they are pregnant, and they have no knowledge of what happened to them. Sometimes they just don't have the capacity to speak on behalf of themselves. And I will tell you, too, that as a woman with a disability women with intellectual disabilities disclose things to me that they don't disclose to anybody else because in the same way that women disclose to each other, women with disabilities disclose to other women with disabilities, because it's a place of trust. So I really think we just don't know whether people have been sexually active.

Prof Deborah Bateson

I think it's a really important point. Tricia. And I must say I've had quite a few conversations with people where they have said that the doctor or the nurse didn't offer it because there was an assumption that that people weren't sexually active And so I think you have to offer it. This is a test that can save people's lives and I think if people are agreeable to having that test you don't know, as you say, you just don’t know Tricia, and people may not want to disclose that they've been sexually assaulted in the past, for instance, and you heard those very high numbers, particularly for people with intellectual disability, around sexual trauma. So I think offering it - and again, it's within that trauma-informed context, recognising that any patient sitting before you might have experienced sexual assault or child sexual assault.

Tricia Malowney

And I think we've all got the right to say no.

Prof Deborah Bateson

Absolutely. Yeah, absolutely.

Dr Lara Roeske:

I was just going to actually talk about how you'd handle this in the clinic setting in general practice, and I think it's not dissimilar to Chlamydia screening or others. So the first principle that's important to understand, is any type of sexual activity puts you at risk of HPV transmission and often people have various views of what sexual activity means to them, and that's speaking a little bit to what Trish was speaking to, and Deb. I think what's important is that we're very clear about the age eligibility. We're not looking to offer or support proactively below the age of 25. There are some caveats to that, and particularly women who are pregnant earlier than 25 may be a caveat, but from 25 onwards it's really about providing people with the information around ‘if you've ever been sexually active’ and perhaps talking a little bit around that but not seeking a specific, ‘Oh, yes, I have’ just allowing them to then make that decision. We do it beautifully with Chlamydia, we basically say, ‘look, at this practice we support an annual chlamydia test for anyone aged up to 30 who's ever been sexually active. Would you like one?’. So we can take that that approach as well. And different patients will be wanting to talk to us about that in different ways. 

Prof Deborah Bateson

That's great. And I think that approach is really the way to go. As you say, this is for everyone, cervical screening, we offer it to everyone from the age of 25. Would you like this? So I think that's a really great way of framing it.

Dr Lara Roeske

Now. We have some more questions, which is great. I'll take the one that's come to me a bit about how far to insert the self-collect, swab. Look actually, Caitlin, I give them precise information about this. I much prefer that they are given something precise. So I encourage patients to hold the swab and hold it at where the red marker is and I tell them that if you're holding the swab where the red marker is - and you might want to try this yourself - the swab’s very stable. If you're holding it right at the end it wobbles around a lot, but that's at the 8 cm mark and we do not want the swab to be inserted beyond that. So I said, look where your fingers are, you shouldn't be reaching that. I show them the tip and I basically said, that needs to go inside the vagina. So you don't want to see it. It doesn't really matter if you push up a little bit higher or just pop it in as long as you then spend at least 10 seconds in there rotating it two to three times. I use my fist, and you know this is the vagina, and literally, I'll be showing them, ‘hold it where the red marker is, we don't want to insert that far, insert inside as long as you can't say the tip, you're right and turn it two to three times’. So hope that helps.

Deb, We've got some other questions.

Prof Deborah Bateson

We do. We've got the one about doing self-collection at home, and how long can you wait before that? If f you've got the rose system, that's the system which requires that suspension in liquids, you know the thin prep, the liquid based medium, I would say, and Lara, you may say something different, but I would say that really if you're offering a system where you've got the systems in place to support home based collection - maybe you've got a telehealth model and you're doing a consultation on the phone then you're sending the swab to that person's home or they come in to click the swab, and then they take it home - I would suggest that really that's only suitable where you've got the dry system. So that person can put it in into the dry swab and that's what gets sent off to the lab. It still has to come back to you to go off to the lab but we know that's stable for 28 days. as Lara said. I think probably the challenges are too great. I mean obviously, someone's not going to be able to suspend it at home. And just that timeframe to get it back to you, and that the systems that are needed to ensure that it gets suspended in the right time, I think, are probably too challenging. But what would you say, Lara?

Dr Lara Roeske

I'd absolutely support that, the time limit is really just a few hours to swell that through the thin prep. And the other thing is remember, we are at the other end of preventing cancer or significant abnormality, the cervix. So you need to be sure that the patient understands the responsibility, and you need to be able to support them to get that to the lab, on time, and within the specifications. I mean, with the dry swab it can languish around for 28 days but someone coming in for self-collection may be under screened, and so ideally, we want to be returning these swaps as promptly as possible back to you.

Prof Deborah Bateson

I'll just add to that. Obviously it is preferable to support the self-collection in the clinic setting, because you then know that you're getting the swab back in your hands; someone gives it back to you, you're going to send it to the lab, the lab's going to process it, you're going to get the results. You've got that system in place to give those results. Obviously, when you're adding in doing that at home- and absolutely we want to open up accesses, it potentially opens up access to people who would otherwise not be screened - but you as the ordering clinician, you do take that responsibility for ensuring that all of those steps are in place, and it really needs systems-based approach.

Dr Lara Roeske

Thanks Deb. We've had a suggestion for a video, and we'll we'd be happy to look at doing that in terms of a demonstration. It's funny we haven't thought to do that as yet, but often we are demonstrating.

Prof Deborah Bateson

There are some great videos. I will say there are some good videos on the NSCP website about how to do self-collection as well as paper-based resources and posters and things like that. But there are some videos which are worth checking out. But I agree that could also be you, Lara.

Dr Lara Roeske

Well, and I think Trish might want to say something, but I think we'll get Imogen to find Deb those ones that you're referring to, And I think, you know, hopefully if you’re doing to come – I’ve got to plug GP24 Sorry, Deb - you may come along and say a live demonstration. There, how about that? So but we'll look into a video. It's a great idea.

Dr Lara Roeske

There is a question there, I think so, ‘Is the approach best to offer this and give option to opt out. Could this be triggering?’ and ‘why isn't this taught in high school as part of sex education?’ Yep, love these questions.

Prof Deborah Bateson

Hopefully, it is going to be now, now it starts at 25. But I think it's really really important, I agree, particularly to know that the options, because often people might hear about it from their mums, about speculums, and people are just not getting the right information about the different options - so it's a really great idea. And hopefully, that is starting to happen now too.

Dr Lara Roeske

So, Deb, I'm actually going to push out our GP, there a little bit further. It was a job I had I supported about 6 high schools. And I used to come and give the mother-daughter talks and the talks to the nines and eights Deb and I know that Family Planning in your day, and others have done amazing work and resources, but GP, you are a community leader. You're respected. Contact your high school, put your hand up - and it's wonderful work - and see if you can help you your local community. I'd encourage you to.

Prof Deborah Bateson

Excellent.

Dr Lara Roeske:

There. I'm just trying to understand the ‘opt out’ question. I'm not sure.

Prof Deborah Bateson

I think the context for that was when we were talking about the approach to people where you can't assume or you don't know, and you don't want to be triggering by asking about prior sexual assault, but just having that offer of self-collection, of cervical screening, to everyone who's age eligible. So I think it related to that. So is the approach best to offer cervical screening to people because they've turned 25, they've come in to see you, but give the option to opt out. But I think the question is, could this be triggering? And I suppose, Trisha, it'd be useful to hear.

Tricia Malowney
Yeah, I was just going to say I wouldn’t be asking about sexual assault. I'd be asking whether they'd had any sexual activity and, read the person, you know. You're all good at doing that. You know your patients. I'm sure somebody won't be coming in to see it for the first time ever, so you probably know your patients better than probably their mums do.

Dr Lara Roeske

Trish, unfortunately, or fortunately, we do see lots of people for the first time ever so I and I think you know one of the ways we're trained is actually, according to demographics. We see some demographics, and we go ‘right, we have to do this, this, this, this and that’ and I think the lesson from tonight and hearing from you is the way we might approach that and often a 25 year old female sitting before us is a red flag to a GP - let's offer survival screening. So I think we've heard a lot tonight about how we need to do that in a considered appropriate way. Back to you, Deb. 

Prof Deborah Bateson

Well, I think probably we've actually managed to cover all the questions which is really great. And they're fantastic questions so thank you. And I think it's 8:29pm so that means that we're pretty much, you know, nearly there on time to wrap up today. But it's been fantastic, and you know, just thank you to Trisha, and you Lara, and Imogen and as well for being a fantastic person putting this all together.

Tricia Malowney

Thank you.

Imogen Gregory

Well, thank you for those kind words, Deb. But yes, thank you to Deborah, Lara and Trisha. It's been so wonderful to listen to you this evening and thank you to everyone for joining us online. As I mentioned, we'll get those resources to you. We'll get the slide deck to you. We'll be making the recording available. Please feel free to share with your colleagues, and we really hope to see you all online again sometime soon. So thank you. Everyone.

Prof Deborah Bateson

Excellent thanks so much. Thank you. Good night all.