Health checks for women with MS

In a spirit of reconciliation, MS Plus acknowledges the traditional custodians of the country throughout Australia and their connection to land, sea and community. We pay our respects to elders past, present and emerging.

Jodi: So, today's discussion, we will acknowledge that throughout this discussion, we will refer to women with MS and what we mean is people who assigned female sex at birth. We acknowledge that not all women will experience women's health issues, and not all people that identify as women will undergo women's health issues. We understand that not all, not all people who experience women's health issues will identify as women.

I am delighted to be joined by Joanne and Louise, we'll call her Jo and Louise today. So, both Jo and Louise I've had the pleasure of working with Louise for 25 years, but reading Jo's history both are nurses who have dedicated really their lives to this. And Jo's done it directly by dedicating her life to women's health with specialising in women's health care. Louise has dedicated her life to providing care and support for women with MS. MS is a predominantly female disease diagnosed in young women and Louise has been on the journey of literally thousands of women talking about how empowering women towards better health. So, it's an absolute pleasure. Both Louise and Jo have extensive long, great careers doing so many different things. I could pick out lots of different highlights. Jo is now a nurse practitioner and midwife in public health and NGO, where she specializes in women's health across the lifespan. She works particularly working with marginalized populations. Jo's passionate about the provision of respectful and high quality care for women. What she's been able to achieve as one of the first nurse practitioners is significant.

Louise works at the Alfred Health in neuroimmunology and has been working with MS for a long time. Louise is very passionate about empowering women and making sure that the patient experience is front and centre always in all we do in MS care. I could talk all day about these two amazing women, but I'm going to get straight into what we're talking about today.

So, Louise and Jo, we're here today because, Women's health checks. Now, if everyone did women's health checks all the time, and everyone did all the right things we wouldn't be here needing to have a webinar about it. But they don't. And we are here to educate women and that's, I guess, one of the barriers about the health checks.

But in terms of, in a short sentence, Louise, I'm first going to ask you in a short sentence, why do you think women don't have the health checks that they should have?

Louise: I think it's a couple of factors. It's time, it's putting yourself first, it's finding the right place that you're comfortable going to for the health checks. And then I think it's a little bit about worrying what's going to be the results of the health check? So, I think with all those things people just keep putting it off. So, I'm here to try and spin it as a positive list for you to put on your phone as something to get that health check and that GP organised. So hopefully we can give you some ideas on that. Was that short enough?

Jodi: Thanks Louise.

Jo, what about you? Why do you think in all your years of experience, what, you know, what do you think are the main reasons overall?

Jo: Well, I think Louise has mentioned a number of issues that I would say as well. I could give you an example of a patient that came to see me on Friday for cervical screening, which is now the new buzzword for pap smear, and she said to me, I haven't shaved my bush. So, she said, I haven't prepared myself for you to do my test for me, and I said, look, I've been doing this work for many, many years and I've got lots of excuses that I can go back to you, and I said, doesn't worry me. So, we were able to get on and do the test for her and she was quite happy, because she actually was a recall of mine and I had to get her back.

So, I think those are some of the barriers, males, male clinician at the Women's Health Centre, we see a lot of women who don't want to see a male. In Liverpool, where I work three days a week there is a high population of people from culturally and linguistically diverse populations, including Arabic women, and so culturally, they wouldn't be seeing a male as their first person to see for a women business type issue. I'd also like to just say that I'm on Darug land, which is just near Penrith in New South Wales, and I acknowledge the traditional owners. I'm an adopted Kamilaroi woman and married to a Kamilaroi man. So that's where I'm coming from. Thank you.

Jodi: Thanks, Jo. Look, fantastic both of you really highlighted the many different barriers that women have both perceived. I think Louise talking about fear of consequences is great because there's a lot of people that go, I don't know what I'm going to get at the other one, did that one and I don't know what's going to happen with this test result and fear can hold us back on doing a lot of things. But what we're going to do today is do some education. And that's a little bit about the different types of tests, the different ways that you can have them. And then I'm going to talk to Louise a bit as well about special people with MS have some different requirements with the different testing. So we might talk about that too.

But we're going to go through first the important cancer screening tests. They're the big ones in, in women's health checking. So, let's start, you mentioned it Jo, the cervical screen and hopefully even changing the word away from pap smear will give us all a little bit less of that PTSD.

Jo: I've got another solution for you all as well, which might be quite helpful you know, when you sort of realise how simple the test is.

So, the pap smear became obsolete in 2017 and is now called the cervical screening test. And the cervical screening test is now a five year test, and I'm sure that everybody will be jumping with joy about me saying that. So, cervix cancer we know, the majority of cervix cancers are caused by a virus called the human papillomavirus. It is a sexually transmitted infection, but it can take about 10 to 15 years for it to actually turn up and cause problems on the cervix. It's also thought to be the main causative agent for things like head and neck cancers, anal cancer, throat cancers, so it's quite a big virus and we all get quite concerned about it if women have the virus.

But sometimes if you have one of the minor parts of the virus you can actually clear it away within 12 months. Some women will have the two main types which are type 16 and 18 and they actually need further follow up. And it really does depend then what changes it's made on the cervix. So, if someone's got an abnormal test, they will always do the old pap smear on it and determine what further management is needed.

So, as I said, it's a five year test. Symptoms, so when I'm doing a history, I'll ask you whether you've had any bleeding, pain or discharge. If you have any of those symptoms, they are red flags for me, so I would order the extra test in that patient if she's reporting those symptoms like bleeding with sex, bleeding after menopause, anything that's abnormal we would do that extra test.

The other option, if you have no symptoms, is to collect a self collect swab. And that's in a little tube. It's in a swab type container. If there's human papillomavirus in the vagina, there will be human papillomavirus in the cervix. So, it is a very, very accurate test, but I find that I have a lot of my older patients who will just say, no, no, no, I'm used to the speculum. That's how I want to do it. But my young cohort, the 25 plus year old women who are happy to, you know, they've never really had a screening program and this program now doesn't start until women are 25, so they're quite happy to do self collect swabs. But the drawback is if you have some virus on that self collect swab, then we have to get you back to take the speculum sample.

So, there's a lot of teaching that we do within that consultation, so my consults around cervical screening will often take me 30 minutes, also if women have had some trauma in their life, we would offer them things like would you like to put your own speculum in? And often that's very empowering for a woman to do that. But again, often they might say, no, no, you do it, I'm happy for you to do it. It's building up trust, which I guess can be another barrier as we go along. So that's cervical screening.

Jodi: So in MS, I'll go back to this one, in MS there is some special requirements for women in relation to cervical screening.

So, Louise, can you just, Tell us a little bit about those.

Louise: So, I think like Jo said, for someone with MS with minimal disability, it's exactly like what Jo said. I think for other people who have spasticity, who may have difficulties getting up onto a couch in a GP's practice, then the self swab for a lot of those clients has really been a game changer. Patients have been delighted in clinic when they've had that opportunity because that's been a barrier, their spasticity and their mobility to get up onto a couch. So, really think about that and also there's some talk now with immunosuppressed patients, it's still unclear, but there may be a three year cycle for them because it's not MS patients aren't on that list at the moment, but there's certainly research looking at that. And so, I would say to your GP I wouldn't mind it every three years. But you may end up having to pay that little bit of extra if you don't have any other complications. But just keep an eye open if you're on Ocrevus or any other MS immunosuppressed drug. Between three and five years is what we're looking at, preferably three years.

Jo: I think that's a good point because there are some women that I see who have HIV, for example, who are on a three year pathway with cervical screening. And your immunocompromised women will probably, that will probably happen with them as well, I would say. But also, it's not just doctors who do cervical screening. I've taught nurses over the years to take very sensitive histories and to do the cervical screening for their patients. And I think we've got nurses on our panel, and I think nurses are very good at conversation and getting women to understand what goes on because I think we spend a lot more time with our patients.

Jodi : Yes, I think MS can affect MS can affect people's sensation. MS can affect spasticity in all sorts of different places as well, and sometimes the symptoms of MS can create barriers in themselves that we don't really easily talk about, we don't feel comfortable talking about to neurologist about your spasticity.

There are ways around those and solutions for that to help reduce those symptoms, if they are a barrier as well, and also, I guess Louise, you might be able to chime in here. I did find when I was working in MS clinics, in the clinics as well, that other things so easily overshadowed the testing as well. I'm not going to get that done because I haven't got time. I've got to do MS stuff. I've got to do MS stuff. And MS stuff is so big and so time consuming that I'm not going to worry about doing the rest of these tests. So, we'll talk a little bit more about that, but let's go on to later on through the talk.

But let's go on to talking about breast health. Louise, I'll start. Is there any need for women to do more on immunosuppressive therapy and MS? Or just because a lot of people with MS, women with MS think that their immune system is changed, full stop, so they might need to do this more often.

Louise: So, realistically, none of the studies have shown an increase in breast cancer. So, what we're asking people to do is, unless they have a family history that they would have talked to their neurologist about, they should stick to the standard screening and self-examination and then after 50, so until that, just standard treatment.

Jodi: And Jo, breast check?

Jo: Yes, about 1 in 7 women, I mean it's, from when I started doing this work it used to be about 1 in 10 women develop breast cancer across their lifetime. It's actually now 1 in 7, which is quite unbelievable really. So, the other thing I was also going to say about cervical cancer, before I get on to the breast is make sure you know where you can get your information from because if you turn up to a doctor or a nurse and say you're due for your cervical screening you need to make sure. So, there's the National Cervical Screening Register that you can actually call, and they will tell you when your last test was because if you have it done early then you'll be up for a bill of about $65. So just be aware of that.

Across Australia, we have the breast screen program. So, you may have seen the vans around or the fixed sites where women can actually go and have a free mammogram. So, it's only for women who have no symptoms. So, if you have symptoms you need to see a doctor, a nurse practitioner for a clinical breast examination for a referral for a mammogram and an ultrasound as well. And I think that that sometimes can be problematic because it can become quite costly. But if you have no symptoms then you’re eligible for the screening because that's what it is, it's a preventative health screening, and you can self-refer for a mammogram. A lot of the mammography services will pick up very, very small cancers that maybe someone may not have picked up on a breast examination, for example.

We also encourage women to check their breasts on a once a month basis. If you're still getting periods, we advise checking after your period. If you're menopausal, then we'd say advise checking your breasts once a month at the beginning of the month, for example. But I have a motto of working in women's health is when in doubt, check it out.

So, if you're worried about something, please go and see someone that you trust who, hopefully will reassure you or, point you in the right direction for the care that you need around your breast health.

Jodi: Hmm, I think that the one thing that the women must have designed the whole women's health breast check thing, because after 50 it's pretty easy. It's just very accessible now for women and it's very easy, it's so easy to just log in, do the check.

Jo: But again, there are barriers, and like everybody's heard all the bad stories about having a mammogram and all the cartoons that show your breasts being squashed and all that sort of thing, but it really takes a minute to two minutes to do it and it hopefully will save your life if something's going on. I have a family history of breast cancer. I lost my mother when I was 13, so I was quite young when she died, but I've had check ups ever since I was 30 on an annual basis and I'm on an annual check because she was under 50 when she developed her cancer.

So, that's the other thing, we look at the family history, we're asking questions about, who in the family had the cancer. Just taking really detailed history so we can advise accordingly as to what you should do.

Jodi: Yes. Louise, did you have anything?

Louise: No, I just think it's another way, especially after 50 and the routine screening, how lucky we are in Australia, I really want to spin it positively that these health checks that we have access to are amazing, and that you can turn up at a mammogram, book in, get results, booking it yourself, and it's a very slick system, and people are really encouraged to take advantage of it. Other countries aren't as lucky, and I think definitely, with MS or not, just go, as Jo said, just do it and, be grateful that we have this opportunity to have this screening.

Jo: That's right. So, the screening program stops at 74, so most women will receive a two yearly reminder, and then after that, you can still go and do it, you just won't get a reminder for it. So that's what happens in New South Wales, I'm not sure about what happens across Australia. But it's a very simple test and it's important. I think all of these tests are important.

Jodi: Yes, and that reminder is great. They do it on a reminder. So, given that they've sorted out, I always had to do it on one day, make sure that you do them all together on one day. It's a good thing to get it all over and done with on one day. Take the day off and get your health checked. And the breast screening can remind you of what those tests are. Probably even less adherent is the bowel test. So, Jo, tell us about the bowel test.

Jo: Yes, that's the next one. So, I'm sure that if we asked the audience to put up their hand, how many have left their bowel screen kit in the toilet, it would probably be quite a high percentage because everybody baulks at playing with their poo, and so as part of my role in what I do is I look at a lot of preventative health care within my nurse practitioner role. I've got kits that I can show my culturally and linguistically diverse women how to use it because there's ignorance around how do we do this? What do we do? I don't know what to do. There is translated information that's comes with the packs as well, but you still find that very much so both probably both men and women are very, reluctant to actually do the test and we do advise getting the test done. It's every two years. There are ways that you can do it. We don't need a lot of faeces into the little container. It's just a tiny little smear with the little stick that you get. And again, it can save your life. And I'm sure that we all know someone who has bowel cancer and who may have waited to do that test. And it really is very important.

I have a patient with a disability, an intellectual disability that I was showing how to do the test. She's in her early 50s, and it was quite funny actually. She came back to me. She's got a wonderful sense of humour. She came back to me, and she said, Oh Jo, she said, I think I did the wrong thing with my poo. And I said, well, what did you do? She said, oh I put the sample in the freezer. And I said, well, I think we might have to do another kit. So, I thought that was quite funny because you can get it wrong and that's okay. Just do the test and if it's wrong, we can get you another one.

So again, with cervical screening and bowel screening, they both have a similar hotline for you to call and order a test or change an address or, you can get information about, when your last test was from both of those hotlines and that's both the National Cervical Screening Program and the Bowel Cancer Australia Program that will give you information about that.

But again, it's a simple test that will save your life. Yes. And that, again, it's important.

Jodi: Yes. I think fear of consequences is a big barrier for that one. In terms of, I've got haemorrhoids and I know I'll end up, and I just don't really want a colonoscopy. So how do you help them overcome that one?

Jo: How do you help them overcome it? Again, I think it's about my language of, this has happened, so talking them through it, this has happened, it's a day out of your life, it's not a long time that if you have to have the colonoscopy, explaining exactly what happens, particularly with that preparation beforehand, which can act as a I mean, it's, it's not very pleasant for those who've done it. You can relate to it. I certainly have found it not pleasant. I think being human around it, and just talking through what concerns that patient or, that woman sitting in front of you may have around family history.

So, again, last week I had a patient where her sister had bowel cancer at age 27, and I just gave her the laboratory kit to do and so hopefully she'll, as a first part of her screening, because really that's quite a young age for bowel cancer and she needed to be screened.

Yes, so I think there's lots of those barriers that we have. I mean even with cervical screening, we have a disability bed that goes up and down. We don't just have that sort of big, big hard bed that some clinicians have where you have to get up onto it. I think that makes a big difference when you've got that equipment that you can just put the bed down, the patient hops on and then you can put the bed up to whatever, wherever you want it.

Jodi: Yes, yes. Louise, what do you find in about accessing, so Jo, people are already coming into your Women's Health Clinic. How do you help people find Women's Health Clinics, Louise? How do you sort of help women do that?

Louise: So, we've had this discussion in clinic where people have actually asked, where can I go? Where's a good GP? And, if you Google just women's health clinics, you'll come up with a nice long list in Victoria. So, assuming that you would like to go to a women's health clinic, that would be my first option and say, this is pretty amazing to be able to go there. Then patients in clinic ask each other a lot and we really encourage people to say, you found a really good, we're at the Alfred, so in St. Kilda, we've found really helpful GPs and other patients then go there. So, it's also asking in your peer supported MS class, have you got a supportive person, you can't recommend, Jodi, but patients can certainly share their experiences. of where they've gone. So that would be my first point is the women's health clinics that you can look up on Google, and then asking other peers in peer groups that you go to, or even just friends without MS where they've gone, and they've felt comfortable, and what kind of service you're looking for.

And maybe it's going to take a couple of goes before you find a GP that you're happy with, or a clinic that you're happy with. If you go to the first one and it's not a great experience, then you go ask again. You don't have to keep going back to the same clinic that you felt uncomfortable at.

I want the patients that come to the Alfred to feeling empowered that they can say, that wasn't great, but I'm going to seek out, I'm going to ask MS Plus, I'm going to ask the nurses in clinic, where else can I go and who would you recommend and help you with that. So don't keep going back if it wasn't a good experience.

Jo: Absolutely. Yes.

Jodi: Absolutely. I think you also touched on one thing there just briefly, Louise, on that thing about talking about it, about women talking to each other about it, and how and how being brave enough to be the one to open the door in that peer group, everyone brave enough to say, I've got to have this test today, it's just not something that I think women talk about a lot, and about what the consequences, and how it feels when you're waiting for the results even. I'm really scared, and I'm really worried about this and part of this is, just that conversation. Jo, do you find that as well? Is that one of the barriers?

Jo: Absolutely. I mean, years ago when I first started doing this work, we couldn't get a pap smear. when it was called that, we couldn't get a result for six weeks. Now I can get a result within three days, which is just amazing. So that tends to reassure a lot of women when they get that report. I've done a lot of things like going and doing a talk to a group of young mums, like a play group, and talking to them about all of these things that we're talking about now. And I've set up a clinic for them. So, to come into the Women's Health Centre and they can all support each other. So that might be a really good way. And I know that a lot of women with breast screening will all go together. They'll make a day of it. And they'll support each other that way. And I think that's important as well, and it works very well to have that support from another woman.

Jodi: Oh, it's so good. I like the idea of mammogram day. Let's have the mammogram day.

Jo: We have our Aboriginal population in Liverpool, they've come down to us, what we've done is we've block booked them and Aboriginal women can access breast screen from the age of 40. And so, we've blocked booked them and they've had morning tea at the Women's Health Centre and a bit of a health talk and then we've walked them up to breast screen and they've done all done their screening on the same day and they did it together, and that was like a really empowering thing for them.

Jodi: Yes, what a great suggestion. It's like when you have an abnormal pap smear test and you hold it all into yourself and then you say to someone, “Oh, I've had an abnormal pap smear, and I know as a woman I'm supposed to be brave” and then someone says, “Yeah, me too” and then all of a sudden, you're all talking about vinegar.

Jo: Yes, absolutely.

Jodi: Vaginas and vinegar, and it was just, I think that concept of being the one brave enough to talk about it, and I know that there are a lot of women who have peer groups in MS Plus so thanks for bringing that up, Louise, because it is really good. Sisters, friends, family it can be such a relief to have that. They're all really great ideas. The mammograms.

So, skin testing for cancer is not one that's particularly for women, but Louise, tell us a bit about the risk of skin cancer in MS.

Louise: Well, I mean, we all live in Australia where this webinar is going, so we're already at risk of skin cancers. As we get older, we definitely should be having our regular skin checks. But a couple of the DMT drugs, namely, fingolimod, we’re really encouraging people to have skin checks annually. People love the fact that they're on fingolimod and they're taking a daily tablet, it’s been great for their MS, but you really want to also just be aware that you need to have that skin check once a year.

Jo: Yes, very important. I think the old slip slop slap messages from the 70s and 80s have really sort of, not helped us a lot, really, in that perspective of when we're growing up in the 70s, we were putting all of these oils on our body and developing skin cancers as we get older. So yes, that's it's a big problem, and women can get skin cancers around their vulvas as well, so, you know importance of checking that I'd encourage that too.

Jodi: Yes, yes. So, what types of skin cancer checks can you have?

Jo: There are services that you can go to that advertise skin checks. A lot of people will get a referral to a skin specialist or a dermatologist because then that might be a much more thorough check. Lots of women will ask me, when I'm doing a cervical screening test could I have a look at a mole on their back or I might find a black mole on the woman's breast and I'll say to her, look, I think you probably should go and get your GP to check that out. Or can I refer you to a dermatologist to have a skin check? I guess it really just depends on who's available in your area. And again, it's a trust thing. One of the barriers we haven't talked about is finances, because a lot of the specialists that we see will charge quite a lot of money, whereas if you went to a skin cancer service where they will check you, they may bulk bill you, so I guess price is a consideration as to where you might go. But I think reporting any lesions on your skin is important, again. So that motto of mine, when in doubt, check it out's a good one.

Jodi: Yes we haven't talked a lot about but, cost is a significant barrier. Yes, Louise, you've been saying, you've talked to me offline about that, that is something you've experienced with patients.

Tell us a bit about that.

Louise: Look, I definitely think that it's very easy when you come to a MS clinic to say you need to go and get these checks at the GP, and it can seem overwhelming. You've got medication. You've got different things that you're supposed to be doing that you may have to pay for, or there's a gap. So, I think it's all about planning and getting the long appointment, and having such a wonderful, the checklist that MS Plus has done, so that when you go to the GP. you're really getting the most out of that one appointment.

You really should be focused, and as Jo said, know when your last cervical screening was. Know when you've last had a mammogram so that you're not wasting time, you've got 30 minutes sometimes, so you might want to have your list that we've got here or that's on MS Plus, and really be focused as to what you want so that it is only one payment, if you have to.

Of course, looking around for bulk billing clinics is word of mouth and where someone is comfortable going, but if I was looking for my favourite GP, I would make a long appointment in advance, I would have my checklist, and I'd be very focused going in there so that I could get all my yearly checks. Mightn't be able to do everything, but I'm going to try and get a lot of them done by being focused as to what I need and what I'm eligible for now.

Jo: That's right, and that includes things like heart health, they're checks that we can do to see what our risk for heart disease is, particularly if we're around that menopause time, which certainly changes our heart attack risk. And have some blood tests to see how you're travelling along, what your cholesterol is, how your sugar is, looking at those sorts of blood profiles, having an eye check, and I'm sure that with MS that would be important to do that as well. And, just generally looking after and checking yourselves for most of the things that we've been talking about.

Jodi: Yes, we have focused on cancer tests, but we also know that it can do women with other medical conditions. One, they tend to, if they're poorly managed, they do worse, the outcome in their MS makes their MS worse, especially as they age. But I've also found that, again, because MS can be so dominant and Louise, I don't know whether you've found this as well, that the other tests get put aside and you forget to think that actually, fatigue could be caused by other things such as thyroid. So, Louise, how important is that in MS and, what do you recommend?

Louise: I think when you're newly diagnosed, you're very busy getting started on treatment, getting things settled, making sense of your diagnosis and, how things are going to look for you as the years go by.

But I keep saying to patients, there are so many other things that you need to look after, that everything is not MS. So, taking the opportunity, if you're with your neurologist in a public clinic, you can get a blood test for your lipids. You can get a blood test for your thyroid. You might have to come back the next day for it to be bulk billed at the clinic, but they're all important things that you can get done. You can get your blood pressure taken at the local chemist when you're walking by, and actually get a number to say to your doctor, that seems a little bit high, or it seems ok. So, there's lots of opportunities and free screening with your chemist as well for blood pressure monitoring.

So, I think taking advantage of that, but definitely not everything is MS. We all age, we all have different genetics, so you're really wanting to, knowing your family history like you said before, Jodi, have you got a breast cancer risk? Have you got a bowel risk? Have you got family history of hypertension and lipids, so knowing already what things you really need to be a little bit more focused on I think is really important and make the most out of the chemist. your GP and your check up at your clinic that you see the neurologist. There's always nurses there who can take your blood pressure if you're worried and then escalate as well.

Jodi: That's true, that's true. The concept of having it all done in one, the organised woman, which so many are, will have it all done. It's not always easy to do, but in that one appointment

Jo: I've just thought of something, sorry, and I think that there's always that elephant in the room of, as women, we look after everybody else and we put our needs after everybody else, is what I'm trying to say. So, I think that that's a really important thing as well, that we need to look at number one, which is us.

Jodi: Yes, for sure, for sure. I always had to tell you my day, I did it once a year every Valentine's Day because it just made me laugh. And so at least I was laughing about something my health check day was Valentine's Day.

COVID put a spanner in a lot of our routines, I think. And now we're all needing to get that sort of get back into routine. Jo, is that something that you found that a lot of women sort of just lost routine during COVID?

Jo: Yes, I've actually found a couple of breast cancers since COVID ended and women started coming out to see us and a lot of gynaecology problems and just not having the chance to get those health checks done, and women, I still find that women are still fearful to come through the doors of our centre, for example, at the Women's Health Centre because, I've worn a mask, I only just started to take my mask off a couple of days ago. I've worn it for the last three or four years and, it's now in New South Wales, we don't have to wear masks anymore, but I'm lost without it, I have to say. But in COVID, yes, lots of fear. I find that there's a lot more fear now with our women coming to see us, and, that they're not having their checks, or they weren't having their checks in COVID. Our breast screen service shut down at one point in New South Wales. It was and still is, I think, quite a hard time for a lot of women.

Jodi: Yes, and I think getting that routine back and and even feeling a bit of a of guilt about not doing anything. Like, going, well, why didn't you do that? I don't know, I think, I think that's another barrier that sometimes puts women off to say, feeling guilty for saying, yeah, no, at the GP. Yeah, no, I haven't. I'm not going to go to the GP because I promised last time I'd go to the GP I had a skin check, and I haven't had a skin check so I'm not going to go in case I get COVID. I find that that's a bit of a barrier too.

Jo: I'd probably say to someone, well, you know what, we're all human. And, don't beat up on yourself if you haven't been for your check up, or you're overdue for a check-up. It's okay, you're here. And I often find myself saying that to my patients.

Jodi: Yes, yes, I guess that's part of, again, having that trusting relationship where you've got where you've got that sort of sense of freedom and openness and non-judgmentalness too.

Jo: Yes. And I think that's important when you're looking for a caregiver is someone who is respectful, non-judgmental, is not going to slap your wrist because you know you did something wrong. It's just very, very important and that's when women will access services when they know that it's a respectful, non-judgmental service.

We also do domestic violence screening as well which I guess is part of screening. We're asking women whether they're safe, how their relationship is. It gives us a bit of a chance and the woman a bit of a chance to talk about some sensitive issues that she may not have spoken about before. So, I hope I that it's OK for me to raise that as a topic.

Jodi: Yes, yes. Well, it's an important part of women's health to have that check as well. Even in the public health system, in the MS clinics, they're learning more about asking those questions as well. Would that be right, Louise?

Louise: Yes, definitely that it would come up in the consultation if there were any red flags or just to ask with anyone, it's hard to kind of tell in a consultation straight away. So, your hope is you build rapport and have people coming back and building trust that you may find out things later on.

But I noticed, Jodi, that you've got the other thing that I wanted to talk about, because we've done the cancer things and the cardiovascular things, and then we're down to bone health. And I think for the MS group, it's a really interesting topic because, not only as you get older, but if your mobility is a little bit reduced and if you've had lots of steroids, then maybe, talking to your GP about bone density and keeping those bones as strong as you can with kind of you know, walking exercise. But if you can't, then we need to be able to do something about it. So, I think that's also a good discussion to have with your GP as you get a little bit older.

Jo: I'd agree on that. Yes. Yes.

Jodi: So, Jo, what tests can you have to test your bone health?

Jo: There's a bone density, bone mineral density or BMD test. It's available to women who have thyroid problems or early menopause, or maybe, correct me Louise if I'm wrong, immunocompromised women as well if they're on certain medications that may impact on their bones.

Louise: Yes. So, you can get it with your GP as a bulk billing as a very quick test.

Jo: There are also referrals to nuclear medicine as well for bone mineral density testing, and the management, if someone was what we call osteopenic, where they may be at risk of developing osteoporosis, then we would go to talk about lifestyle management, which would be vitamin D, calcium, weight bearing exercise. That may be hard for women with MS. I'm sure Louise would talk about that shortly.

If it's osteoporosis, it usually is a medication that might be a six monthly injection. But, as we get older and go through into menopause, we're at risk of osteoporosis because of a lack or a lowered estrogen state. Which menopause will do that for us?

Louise: Yes, so it's just another thing to contemplate as to your age, your mobility and how many lots of steroids you've had over the years, just to have that conversation with your neurologist and GP.

Jo: Again, we're trying to look after ourselves.

Louise: Yes, yes.

And then I can see the last one on the checklist is immunisation, which is, I think we're all a little bit probably burnt with COVID, and how many. But I think that's also another reasonable thing for people to consider that, when you're going there, am I up to date with my flu vaccine? Am I going to have Shingrix? What vaccine is relevant to me at what age and what treatment I'm on for my MS? So, that's another conversation as well.

Jodi: Mm hmm. And I'm going to use that to segue right along. into the final discussion which is sexually transmitted infection and having been tested and what sort of screening day do we do? How would you know, I don't know whether I've got a sexually, how would you know if you had a sexually transmitted infection and what do you need to do about it?

Jo: Well, sometimes you may not know because you may not have any symptoms, which a couple of our infections tend to not give you symptoms, but I might make a start to say that in 2022, 62,400 women were diagnosed in Australia with an STI or a sexually transmitted infection.

That's huge. COVID sort of has kept us with, with lowered numbers but certainly we know that now we're getting a lot more outbreaks of Chlamydia, Gonorrhoea, Syphilis is a big one. So, Chlamydia and Gonorrhoea will often give you no symptoms and if you do have symptoms, sometimes it can be a bleeding between your period or a bleeding after sex. It could just be, I've diagnosed a woman who had recurrent urinary tract problems, so we just got her to pass some urine in a jar and we sent it away to pathology and came back as a positive for chlamydia. So, taking a history around that probably don't have time to talk about the whole history but just asking questions and, what I always do is, is ask the woman. I'm going to ask you some sensitive questions about your sexual and reproductive health, is that okay?

So, I think setting up that question, that particular question right from the word go enables that woman to know, oh well she's going to ask me some questions, so that I can actually really determine what tests that I'm going to do from there. And so, for a general sexual health screen it would usually be chlamydia and gonorrhoea in a urine sample, and she can just take that sample little jar into a toilet and do it herself. If there's a discharge, we'd take a swab and then we'd work out around, is there a risk of things like HIV, syphilis or hepatitis and then we would do whatever tests we need to do accordingly.

Back a few years ago the RSVP website which is an old dating site did some major research into older women coming out of relationships and starting to be on the dating scene again and, unfortunately there were high rates of STIs including chlamydia, gonorrhoea, syphilis and genital herpes.

That really was a way for us to have a bit of a campaign around that whole safe sex message. And, I suppose, I'm sure Louise would probably talk a little bit more about manual dexterity using condoms and how difficult that might be, even just the whole idea about dating after being in a relationship for a long time or whatever's going on.

I think that the screening sort of test that we would do would be the STI screen, looking at discharge, many women get vaginal discharge that might be abnormal, and we would test for that. And then checking some blood results to see what they're like as well, plus quite a lot of education and health promotion around safe sex using condoms, all that type of thing as well.

Jodi: What's the general advice in MS? These tests are sometimes done before people start treatment, once you're on an immunosuppressive treatment, that can make it worse. So, I was just saying to Louise, what's the general advice around that?

Louise: I definitely think for most people starting, especially when you're newly diagnosed, you're contemplating treatments, you'll notice that your doctor may send you down for a whole range of blood tests, and often when people walk down there and they look at it, they go, Oh my goodness, they think I've got syphilis or HIV or Hepatitis B, so I often say to people, this is our standard screening to make sure that you don't have anything that you don't know about, and also to see if there's any vaccines that you need before you start treatment.

So definitely the immunosuppression screen, prior to starting treatment, and you might also notice that they do it every couple of years, just keeping people safe. So that's a really important test and it may come back that you need your measles vaccine your measles teeter might need a little bit of a booster before you start treatment.

Or that your mum might have missed your childhood vaccination so you're not immune to chickenpox so you might need to have the varicella vaccine before you start treatment. So, I think making sure that your measles, mumps and rubella are up to date and that you've got positive immunity to it, your chicken pox, and then we look at other things like whether you need hepatitis B vaccination, which is a very simple three vaccinations to get, which is really helpful if you're coming into hospital a lot. And then of course there's the travel vaccines that you might want to consider as well.

So yes, there's a lot to take in, but don't be frightened. We're not looking at you when we hand you the immunosuppression screen. It's just that's our standard for everybody and we would just like everyone to have those blood tests before they start an immunosuppressive treatment.

Jo: I guess it highlights for me the importance of including patient in general information and saying these are the blood tests that I've ordered, and we have to order general bloods because we're looking for other things, not necessarily MS, for example.

Louise: Absolutely. Yes.

Jo: And really just explaining what the test means. I think that will also be about health literacy, and really knowing what to expect when you go for a test, again is important.

Jodi: Yes. Well, I want to thank you. We've gone for an hour and I'm sure we could go for a long time. We've covered so much today, and I guess there's so many things that Jo and Louise have highlighted. Thank you so much for both sharing your experience today. It's amazing.

One of the things that we did bring up is the difficulty in talking about it and how to start a conversation, and also how to have a conversation with and finding health care for people that you trust, but that's always not so easy.

So, what we've done we worked with the team at the Alfred to put together a preventative health test checklist So it covers off the things that you need, with any particular hints or tips about what people with MS might be needing. So, this checklist is to educate you, but also to give you an in, to say to the GP: Here's my checklist. We've made it so that you can take a photo on your phone, so you don't have to print it out, so it can be environmentally friendly as well.

So, it's on our website, and it's part of our Women's Health Week, and it's as much about giving people the education of the tests they need but also something that you can hand to your GP and say: Here's what I mean. There's a part on the back for your neurologists to write down if they've got anything specific that they want too.

But we know that it's not easy to say, I really want to be checked out for STIs, but I kind of feel weird asking my GP about it, or it really is probably a big one, but I want to talk about my sexual health. But now you've got a brochure to say, oh, and I need to talk about sexual health, which can kind of open the door for you.

So, I'll finish with that checklist and also, again, Joanne and Louise for sharing their time with us. And, if this has brought up anything for anybody who may want to have a chat our nurses, our MS nurses are available. A lot of MS clinics do have MS nurses who are available and there's nothing like a good nurse to help you break down those barriers.

To help you get you right through that literacy, as Jo and Louise have so beautifully done this evening, just talked about it in a really authentic, real way. Our MS nurses are available for those who don't have them at clinics and they're just online to give a call to as well. And then we got the peer support team, lots of other resources and also lots of information.

And this webinar, if you want to share it, will go onto our resource hub, again.

So, thank you again, Jo and Louise.