MS Webinar: Pregnancy and MS

MS Webinar: Pregnancy and MS

so hello everyone good afternoon um welcome to our ms academy seminar and thank you all for joining us today so today we’re going to discuss about management of ms in patients with management of patients with ms and pregnant pregnancy when they have their dmts we all know that ms affects women of child bearing age and the majority of patients on at the time of diagnosis they would have not completed their families so we really want to welcome our speakers today we’re going to go through preconception counseling discussing the management of active ms and the dmt’s during pregnancy and and then we’re going to have a a discussion at the end about how we establish a collaborative working between the ms and maternity services so i’d really like to welcome dr karen chung a consultant neurologist at the national hospital karen is a consultant neurologist with special assistant ms and has also got a special interest in preconception and obstetric care in patients with ms and thank you karen over to you so thank you very much um and to the ms academy for inviting me to take part in this webinar and as as has mentioned i am a consultant neurologist with a specialist interest in ms at queen square and i personally have an interest in preconception counselling and how to support our female patients who are considering family planning and it’s quite exciting because we used to have very little options and you know you sometimes meet patients who are diagnosed 30 years ago and they will be told things like oh maybe you know if you don’t want to have a family desperately then don’t or they have to come off treatment if there was any treatment and it was amazing when i thought about this talk today is that we’re in a position to have a whole chat about it to have options which is really quite remarkable and really shows how far we’ve come in in the management of ms so um this sort of decision making model and dmts shouldn’t be too unfamiliar to to most of you in the audience and there are many factors to consider when you are making a decision with a patient about which dmt to embark on whether it’s first line or subsequent therapies so i put here briefly that the key factors that i consider in any ms patient would be of course underlying disease activity there’s a huge spectrum of long-term outcomes and ms and how active people’s diseases are and therefore this will indirectly um or directly uh guide what um what dmts they’re eligible for which will vary between countries but in the uk we’ll have quite clear nhs england related to the to the criteria things like mode of delivery where some patients would say absolutely no to a certain form of of medications whether they have any co-morbidities which will impact our decision making how risk-averse an individual is you know we’ve all met patients who despite quite active disease does not want to have any treatment and you also have patients who would opt to have higher efficacy treatment even after you know one or two minor smaller relapses and um things like lifestyle how how busy they are how active what’s their family life and the monitoring requirement and so that’s just for any ms patient and then if you factor in family planning um wait let me just so family planning is similar but that you have additional factors to think about which key is being female but also age and fertility it can be quite a tricky decision to a discussion to have and i think in this respect being female potentially helps that in in patients who are mid to late 30s even early 40s i can be quite frank and say you know fertility have shown to sort of reduce and therefore we should make decisions soon um why is pregnancy um treatment decisions always tricky well because it’s unethical and we can’t do trials on patients who are pregnant so therefore any data we have is purely from real world data where we accumulate um enough number of drug exposed pregnancies and therefore it’s not surprising that the older cmts are the ones that we have most confidence and data in and because usually there’s a threshold beyond we need about a thousand exposed pregnancy to to form some kind of uh view whether it is saving pregnancy also so this is a very very simplified overview in my head when i talk to female patients considering flammate family planning there’s sort of two categories one is the continuous therapy category versus the induction therapy side the continuous therapy as the name suggests is a treatment that we give continuously before conception the patient will continue treatment throughout pregnancy and usually continue beyond and at the moment the drugs that we are you know deemed safe to do them and certainly on the spc include at the first the first line platform injectables meaning interferons and glutamar acetate i think by now being the earliest emts available since the 90s we now have a wealth of data indicating that they are overall safe in pregnancy and they have been factored in in the spcs so that’s sort of straightforward for our lower disease activity patients and then in more recent year we’re gaining more data and confidence in continuing treatment with natalusa map um in in patients with higher disease activity um the current that is not in the product um it’s not an spc so but the current discussions you have will be um as ever about risk benefit ratio about whether um what risk of rebound they will have if they were on thai library and they come off tysabri and if the decision is to continue it during pregnancy then um at queen’s where what we do is we aim for extended interval dosing either six to eight weeks and then not infusing beyond about 32 weeks or so because of associated hematological issues in the newborn and we’ve had that with a number of patients that we’re gaining more confidence in these patients and liaising with the obstetrics team so that’s a continuous side and the induction side we’re now lucky enough to have options where uh there are drugs available whether the treatment design is that they are given the drugs early on and sort of symptoms in a simple way cycle one and two in both cladribin and alan tutuzuma so there’s a window opportunity where a number of months beyond treatment there’s no ongoing drug toxicity and that may be a good option for for these patients it’s a bit dry just to talk about drugs and pros and cons individually so it’s always helpful to talk about a case so i’m going to use um a case that was um provided to me by msk academy as a framework to talk about the sort of discussion that you have in the more active ms patient so we have a 32 year old lady with rapidly evolving severe ms so we know her background activity is high her first line gmt was natalizumab she had this for four years and she was quite stable on this however her jcb index became higher to more than 1.5 and because of pml risks she was switched to fingolimod three years ago so when she was 29 she’s now planning to start a family and has requested going back onto natalizumab for for her pregnancy and the question is you know what would you advise so i think there’s a very realistic scenario i think most of us will have come across patients such as this before and i think i’m pleased to say that in the past you know a few years ago maybe five years ago we would perhaps stop um your dmt or go to injectable but i think things are changing a little bit so going back to my previous factor consideration um when it comes to decision making let’s go through some of the factors disease activity where she has active disease we know that that’s from the onset she was eligible for natalizumab so by definition will expect that she is has higher disease activity and would benefit from a dmt more than a higher fcdmt more than not the second thing to consider is the current dmt she’s on fingolamod and we know that fingolamar this molecule and that’s not recommended and considered currently unsafe for pregnancy and for people who are planning we would advise a washout period a difference between centers but at queen’s where we advise about two months um wash out before they’ll consider conceiving and if they fall pregnant unplanned on finger laumont will advise them to stop so if she’s hoping to have a family then clearly the current dmt um need to be stopped and then you think about things like potential risk of rebound which is associated with a dmt such as fingolamod and the other thing to think about which we don’t know in this patient but assume she has a degree of lymphopenia which is common in tengola mod how long will the recovery be um before we can potentially start another dmt and i think going back to something that i think lucy and sarah will will cover later about the importance of preconception counselling is perhaps at the age of 29 three years ago you know was fingolamar the best emt for her and um you know if this happened a number of years ago where there was very limited um options particularly with oral options then maybe that was the best um or most suitable dmt or maybe she had personal reasons to go for it but i think um in a young female with potential to start a family i personally probably wouldn’t advise that nowadays but that’s a personal opinion so then key question um so based on my talk is what’s next what what what was her next um disease modifier therapy that will suit her and what should we go for so what you know so fingalwa is obviously not not suitable um as tysabri natalizumab suitable potential and potentially so the thing that we consider you know considering her she stopped nationalism uh three years ago because of her pmi risk so let’s look at what her pmi risk is so she’s jcv negative that’s you know negligible i think most of us will be wouldn’t have stopped her she will have continued infusing she however has a few uh risk factors for for higher bmr risk so namely her antibody index is more than 1.5 and what we do in our center is even though the antibody index may fluctuate we take the highest recorded we have so to give the most conservative risk estimation she’s now had three years of more treatment so she’s had additional immunosuppressant use so that will put her risk at about eight per thousand so that is less than one percent and this will differ between individuals but presumably she is asking to go back to natalizumab so she is not completely risk-averse i i’ll discuss the pros and cons with her and i think in someone like her personally i would be comfortable with her going on to naturalism certainly at least to cover um the periods where she’s going to have a family and then maybe consider potentially switching even in the future so going back to this slide um so i think natalizumab is certainly a option i think is a good option what alternatives are there well we talked about um the you know the two slides ago the induction therapies which in the current dmt menu will include cladja bin and alantusa map i think ellen twist map is um the views is much more much more restricted now and she technically hasn’t um had breakthrough disease on the empties that she’s been on so she potentially would not be eligible um but i think hadrobin is is another one that i would personally consider and discuss with her um the benefits being that you can conceive six months after a doze the last dose so giving her a slight window and she’s 32 so she potentially can afford from a fertility point of view to finish cycles one and two and then think about um starting her family the only thing that will put me off a little bit which is unknown is you know the degree of lymphopenia and and how long she recovers from it because you would like that to be more um towards the normal range at least sort of round one or at least 0.8 before we’ll consider starting her on quadrupen so we talked about a few things there um but um yeah i think i think the things to remember is there are now many treatment options uh for all ms patients but particularly for women with ms who are considering pregnancy which i think is remarkable you know i i think it’s very exciting to to able to talk about options with these uh with this patient group um as mentioned early discussion and preconception counseling are key particularly if we’re going to talk about switching treatment particularly with induction therapies you may need a little bit longer before family planning is deemed more appropriate i don’t think there’s always a right answer as always with ms it’s always about risks versus benefits and in this group of patients you just have more factors to consider most importantly we need more dmt exclusive pregnancy data that will help inform future guidelines and practice and we already have that with the existing um injectables anatolus map which we are practicing on a regular basis so on that note i would like to bring you all uh attention to to the ms pregnancy register which has recently been established and that is how we are hopefully going to collect um data to give us a picture of how um this how we can best advice different patients um if you’re not aware of this and the uk consensus on pregnancy and ms which was published two years ago in practical neurology um is open access so i personally refer to this the whole time is very helpful piece of document and in your patients who are more engaged and want to be more informed and because of open access i i will sometimes guide them to to it so they can be more engaged in their own care on that note many thanks for your attention and thank you again for inviting me thank you very much karen for this really um excellent talk and really nice um update and we will move now to our next speaker i’d really like to welcome lucy lyons uh hello lucy lucy is an advanced nurse practitioner works with karen um at queen’s square um and lucy is part of the msmdt and collaborative care and obstetric care and patients with ms so thank you very much lucy lucy will be talking to us about preconception counseling over to you lucy lovely thank you that as a for the introduction and thank you for the invitation um to the ms academy and yes so i work alongside dr chung at the national hospital for neurology and neurosurgery as an advanced nurse practitioner in multiple sclerosis and part of my role is exploring kind of new pathways and setting up new clinics and obviously since the pregnancy sort of guideline in 2019 preconception counselling has very much been on everybody’s radar and you know the real importance of that hopefully i’ll talk about through this session and my experience of this sort of topic and how i include that within my clinical practice and my role in sort of setting up a specialized sort of pregnancy pathway for our patient cohort so first off we have our own ideas about what we want to sort of include in a clinic and a service but you know we need to get sort of user engagement i need to kind of understand patient perspective of everything so the clinic was really sort of set up in the pandemic and so you know took hold of everything that we could do sort of virtually and sent a patient survey to a patient cohort that we had between sort of who gave birth between 2016 and 2020 to kind of understand sort of their experience of their obstetric pathway previously and how we could shape the service for sort of other women and sort of future people thinking about family planning so some of the results from that survey is 71 felt that their maternity team were not adequately informed of ms and its effects on pregnancy 93 would welcome access to a specialized service that considers preconception counselling pregnancy and postpartum advice and support so at this point we think okay the unmet need that we thought was there actually is echoed from our patient voice as well and i think it’s sort of really important that we have these discussions with them and have them as early as possible so that we can work alongside their existing timeline of family planning we want all of our patients to achieve all of those life goals and i think you know we can help them sort of in their life sort of work out between all the different options that we now have available and i also wanted to get a bit of an understanding of how they felt their their care could be improved so again i think it’s it hits home a little bit more if it’s come from a patient voice so i asked the question how could your pregnancy care have been improved from a nervous perspective so again this is sort of pre sort of guideline really and pre um a lot of the newer clinics that have now been set up to oversee this um topic so one patient the obstetrician didn’t know about at all and told me putting on weight will make my ms worse i got more useful information off the ms society website than from the obstetrician and we’re quite lucky as a condition we’ve got some great charities out there but we don’t really want our patients to rely on those websites only so i think you know part of what i include now for everybody um sort of with the preconception counselling is okay looking still at lifestyle looking at sort of diet sort of exercise um and see what needs to be amended what i’d like to sort of work on is producing sort of a tip sheet or um sort of a little booklet alongside the physiotherapist they can actually sort of go home with some exercises or amendments to sort of their plan for that sort of pregnancy period so another crate i had many new ms symptoms while pregnant including existing symptoms flaring up but when i asked for advice i was often told that symptoms usually improve while pregnant and there wasn’t anything that could really be done for the new symptoms unless i wanted to take a course of steroids so again you know upon preconception counseling very open and honest you know let’s let’s talk about what the what we believe to be sort of a pregnancy pathway in terms of lower risk for the first half of having symptoms sort of high it’s sort of um same risk of the first half of pregnancy lower risk where that immuno protection kicks in and then slightly increased risk postpartum we talk about sort of long-term prognosis etc and how um how actually sort of pregnancy doesn’t ever have an overall negative um impact on one’s condition uh but also you know talking about okay so what are potential triggers of symptoms we reiterate sort of on to the heat and fatigue and other things that might be exacerbating things but also you know these patients now might be on treatment so again is this patient on treatment or they’re not on treatment do we need to talk about treatment do we need to talk about escalation of treatment do we need to be talking about getting them into our urgent access clinic for uh assessment so again all of this i think it’s really good to sort of have build a rapport be open and honest from the outset and to say okay well overall people do well during pregnancy fantastic but actually for the minority that isn’t the case and people can still have symptoms so i think it’s really good to explore all possible pathways a great pathway they do really well and they’re not so good where people might be troubled by symptoms so they know they can access this and know what input that they can have and be provided with um third weights that have not sure could have been improved brilliant um although with people uh although with people less informed they were much more cautious with me which meant i may have not been allowed a birthing center experience which is what i was keen to have and did have so from the facebook it looks like it’s a lady that’s probably already had a pregnancy um and again you know might sort of go through different options uh sort of water births birthing centers labor wards but again looking at that individual’s um sort of ms history and what they would be safe to do and working with the obstetric team and i think my initial uh sort of patient cohort they did the survey i would probably say it was 50 to their obstetric care you said h and probably 50 percent other trusts and there’s been a shift in that now whether it be through the pandemic but i think a lot more people are have accessing more local services so i’d say there’s probably sort of more higher percents that are now having obsessed with other trusts outside of uclh so if the next quake the midwives were giving me contradicting information i was high risk normal risk i wasn’t worried at the time but it encouraged me to really go for a c-section as i was terrified at the time already but nurses and midwives not knowing about my ms made me a little scared c-section meant i was guaranteed a doctor and a good more predictable care sort of through childbirth and and again depending on if people have sort of other comorbidities kind of their physical restrictions from their ms but you know if they’re unrestricted they’re in remission they’ve got no other comorbidities then generally we would see them as a low-risk pregnancy um however i do say that to earn the trust you know it might be consultant that care uh so that might mean you have additional scans but that’s not a negative you know that’s of course if you’re having more contact with your obstetric team so just sort of putting it into context for them so they don’t sort of have that anxiety and that sort of feeling of being scared and sort of the other one talks again about the pros and cons of elective cesarean versus vaginal delivery and i think again sort of you know reassure them actually 90 of women can go on to have a natural vaginal delivery i think it’s really important um to be open up front with the obstetrics team i always say to them have a discussion about um epidural and anaesthetic so that it’s documented your care notes so that if for example you did have to have an epidural for pain relief or for a sort of c-section you know it’s all there ready so it’s not going to cause any delays on the day it’s better to have everything documented in advance so again you know we don’t know the guaranteed path because babies have their own ideas as well um so it’s good to sort of have have a bit of an idea and be a bit of an open mind about all sort of possible outcomes and then finally about bit about the communication so for them to have access to my ms records i had to explain everything over and over again so again we’ve now got uh electronic healthcare systems so patients can have their medical notes their letters um their recommendations from their care team at ucla sort of the national hospital that they can show their obstetric team if they’re not under our care for their pregnancy and again more communication between consultants and more contact with the team at uclh and again that’s something that we are now able to offer to provide we can link up with sort of other services if they want to talk to us about individual sort of circumstances and i think it is really important i remember a lady whose main symptoms from s was really significant bladder and bowel dysfunction and actually for her cesarean section was the right call and we we sort of worked with her care team to help facilitate that for her so the key things from that we should discuss family planning and pregnancy proactively as early as possible and i think that can be done from sort of any member of the healthcare team um it’s just getting talking about it and you know even if they then come to me so i had a lady that was referred to me a few months ago said oh you’ve been trying to conceive for a couple of years uh but actually they had never been to the intercourse there was many more sort of issues so i think if we ask the question and whether or not you know being a mum myself can be more open to talking about certain topics um may sort of benefit from our sort of older male colleagues who knows but i think just asking the question anybody can do that and i think as early as possible improve communication across all care teams so someone that we’re all working on offer advice and support on family planning issues in ms and troubleshooting provide up-to-date information and what can be a very confusing time whilst trying to navigate all the myths that exist surrounding pregnancy and ms and just think for a lot of these patients they’re newly diagnosed as well so they’re not only having to sort of emotionally work through that process but also sort of work through kind of the impact that this is sort of going to have and i guess it sort of takes more of a spontaneous sort of aspect out of things so you know things are more planned and often you know i’m the first person that somebody tells that they’re pregnant so there is that element to it but i think you know being open and honest from the outset um is a real key so topics outside of that and again this is not exhaustive um that we sort of covered the preconception counselling is obviously our doctor sort of mentioned a disease modifying treatment and obviously this is a real key and i sort of see patients sort of weekly in an allocated sort of clinic for patients that are more complex and more discussion regarding treatments then i have a monthly mdt with dr chung and then on the symptomatic treatment i also have a monthly obstetric clinic which i again i can either ask for advice for or i can refer sort of into so again so they’re very lucky to have that sort of different different windows um to explore depending on the patient’s needs but i think with the disease modifying students you know as dr chiang lu did you have people that are really risk averse and you think historically you know people don’t want to take sort of medications sort of for pregnancy you might have the rule of risk averse and you know if they’re going to not be on treatment we don’t know what their fertility is going to be like and we know that potentially sort of 80 of women will fall pregnant within the first 12 months so it can be out you know and there’s a high miscarriage right you know 15 you know for a german population so again sort of talking through all of these sort of avenues and i said okay well if we you know if you’re actively looking to conceive now why don’t we just try an injection at least then you’ll know you’ve tried it if you tolerate it great if you don’t we can stop that and then we kind of know that further down the line that’s a treatment that we may not explore so just sort of looking at the ones that potentially we do have more data on and there’s a good safety profile and just sort of talking around all the potential sort of scenarios and also you know touching on the potential side effects that the disease modifying treatments um for example sort of hypothyroidism so if they are pregnant you know other team aware about sort of the blood sort of checking their thyroxine levels just to sort of make sure that they’re safe on their sort of pregnancy and sort of timeline and then symptomatic treatment again you know if people are really fatigued you know epidurals can be used as fatigue management you know conserve their energy in the early stages of labour so that they can you know have more energy for the active sort of pushing sort of phase looking at sort of bladder dysfunction talking about pelvic floors early um sort of looking at all the other symptomatic treatments um that other people might sort of be on if it’s sort of pain management and sort of etc so again you know it’s not ideal for them to stop all of their medications because actually if we’re looking at somebody’s quality of life but it’s about being on the lowest effective dose and we’d always sort of then get our advice from our statute colleagues for that vitamin d again we would advise our sort of women to remain on the high-dose vitamin d um sort of throughout pregnancy again it’s one of the risk factors that we can sort of control instead of in pregnancy smoking cessation i think it’s a real opportunity to bring this up uh 10 of pregnant women smoke um so again a lot of women kind of use this as the motivation for their ms because we know that again in terms of prognostics for sort of progression you know this is a modifiable risk factor and in terms of babies health so having those discussions early on and you know that they can have nicotine replacement therapy there’s great sort of psychological support but doing it as a combined it will you know three times more likely to sort of make that quit attempt so if you’ve got people they’re saying i can do it on my own uh there’s less chance of them sort of going through that um and you know even talking to them about their partners okay to their partner smith because even that can have an effect on sort of babies birth weight etc um and then if they continue smoking and they need a c-section it’s about you know potential delayed in wound healing or complications for anaesthetic there’s lots of things to sort of talk about in terms of smoking cessation and pregnancy as well vaccine’s a hot topic uh as we’ve all been living and breathing through the pandemic and i did really feel for our sort of pregnancy court just because it’s very confusing advice not to have it and then to have it um the stance from uclh has always been very pro vaccine and i think you know sadly we i think we’ve got two or three sort of pregnant ventilator patients in itu um and that’s sort of that’s you know the reason to prevent sort of these severe complications um sort of from covid but again it’s sort of working with and making sure that they’re making informed decisions directing them to the royal college of obstetricians and oncologists they’ve got great q and a on there and just so that you know if they are sort of declining the vaccine that they are sort of doing that with the most up-to-date information um and again you know this poor patient sort of cohorts you know probably being isolated and they’ve kind of not had sort of the the great sort of social setup that we would have had um you know if we were so pregnant outside of the pandemic so really do talk about the emotional side of things um about sort of if so on know other medications to remain on that talk about sort of postnatal depression and all of the support um and the logistics sort of afterwards as well and whether that be you know looking at sort of nct classes or sort of baby groups and looking at the wider set up um you know sort of family sort of friends talking about sort of logistics to restart treatment for example so if they’ve uh on tysabri you know working with them about when they can restart are they breastfeeding okay do we have to sort of talk about sort of expressing as well to allow them to attend for treatments do we sort of allow to suggest again sort of expressing so the partner can help with a nighttime feed there’s sort of so much you know in this it’s a really vulnerable time for women where you know they’ve gone through the trauma of childbirth they um it’s obviously have it’s a new routine especially if you’re a first-time mum i’ve got the sleep deprivation all of these sort of things so i think you know what i sort of tend to do in terms of my clinic is would follow them up then sort of postpartum until they’re either uh sort of up to 12 months or back on to their existing treatment or sort of as and when sort of as needed and i think i’m overrunning so i don’t know if i have time to properly discuss this case study but i’ll just sort of briefly um sort of go through it because i think it is really important to discuss again sort of postpartum relapse plans and just sort of talk to sort of women because so we don’t have that crystal ball we can’t say for you this is going to go one way and even if you know with the new generation of treatments it’s people still may you know have have sort of relapses so this lady 27 year old relapsed from writing ms on set 2011. and again not surprising i tried a different array of medications capacity now the next tech federa and then she escalated to alan tuzumab after lesions on imaging so she had two cycles 2018 2019 and had her first child in the november of 2020. however we do i do try to coordinate sort of imaging in that three to six months sort of postpartum she had some imaging done and the mri showed a new lesion and then we were in regular contact she was really sort of struggling she’d had she had sort of a relapse in sort of the march we saw her in our urgent access clinic um we then she was breastfeeding and she wanted to exclusively breastfeed until till the child was about one and she was quite keen on this um so we started the bravia was still really struggling was having you know struggling sort of her legs giving away when she was pushing the push chair struggling sort of with the neuropathic pain and again we didn’t she didn’t really want to take the risk of starting something for that in terms of breastfeeding as well so she was then decided well i’m going to try and wean breastfeeding her case was discussed at omdt and then we proceeded with a psychotherapy of adamtuzumab sort of earlier this month during that admission she had repeat imaging as well um and again there was sort of new lesions of evidence sort of on that sort of mri so to conclude you know we have got a large number of dmt’s available now which is which is amazing fantastic for sort of our young sort of child-bearing cohort and i think there’s a real drive to standardize clinical practice we’re all here today to talk about how we’re sort of incorporating things in our practice and about sort of shared learning and ultimately what this will do is improve patient outcomes increase patient satisfaction um so i think you know having these open discussions on this webinar is really great and so thank you thank you for your time today and again reiterating dr chung’s point about sort of the new ms pregnancy register which will hopefully not have an effect on our current patients but will guide sort of our future thoughts and practice thank you oh thank you so much lucy this is an excellent talk and and thank you very much for highlighting the importance of preconception counseling and thank you also for sharing uh your patient’s thoughts about how they felt um about the the their care during pregnancy uh so that that’s that’s that’s really um excellent thank you so much i’d like to welcome sarah white uh sarah is a senior uh ms specialist nurse um works at st george’s um sarah’s got an extensive um on the collaboration between ms and the maternity care so thank you so much sarah for coming and sharing your experience with us i’ll let you take over thanks well hello everyone thank you for that introduction and thank you to the neuro academy for asking me to speak as well um so i’m going to talk to you about our combined maternal medicine and ms service um that we set up a few years ago um [Music] some some of it will be fairly similar to what lucy’s spoken about but um um you’ll see how we do it at st george’s so just before we um look at it this was a danish study that was published in 2018 looking at family planning awareness amongst people with ms and it showed approximately 50 percent of patients who had children after their diagnosis felt inadequately informed about treatment options during conception or and after conception during pregnancy and also at least half of them didn’t know whether dmts actually could have affect the fetus and so that really backs up what lucy was saying in her survey that many people aren’t well informed and you know we have a responsibility to make sure our patients are informed and so our service was actually born out of a complaint from a patient who said her ms was not taken into consideration during her labour or while she was on the maternity ward and so um i got together with the lead midwife because we obviously needed to look at what could we do better and our epilepsy service already ran a joint clinic and we could already see the benefits that um that was um giving to the patients and we thought well we could do something similar so we set up our service this is a condensed pathway because otherwise i couldn’t fit it on one screen so the patient um will inform the ms team hopefully uh that they are pregnant and the first question we obviously have to think about is are they on dmt and if they are were they meant to be when they got pregnant if they’re not we’d obviously advise them to stop um if they are you know and there’s been some preconception counselling and and the you know they they were they deliberately got pregnant it wasn’t by mistake then obviously that there may be a plan to continue with what they’re already taking we obviously need to consider whether we need to fill in a yellow card if it if it’s a dmt that they shouldn’t be on whilst pregnant and we this is the third plug for the ukms pregnancy register we’ve had today but we also now are encouraging patients to join the register it’s a study to better understand the potential effects of exposure to uh medication in women with ms uh who become pregnant uh and they’ll the study will also be following these women through until the child turns five so we’re really encouraging women to to join the register so we can find out more about the effect of these drugs um we’ll add the patient to our patient database and also we have a pregnancy database um and then they will um book in and see a midwife between 8 and 14 weeks and then they’ll follow the normal paternal medicine pathway and at this point the midwife always checks with us do we know that our patient with ms is actually pregnant so that’s sort of the second point where we we just make sure we we are aware and then when the patient is between 28 and 34 weeks gestation we have a combined clinic where the ms nurse and the midwife that’s caring for this patient will have a joint review and we go through a number of things which um i will just go through here so some of these things lucy’s already mentioned so we’re looking at the birth plan it will will there need to be any um special considerations perhaps because of spasticity um with position so we’re looking back with the midwife we’re talking about the postpartum relapse risk have they got a plan in place do they have they got people around them that can support them if they should have a relapse um during that postpartum period we’re looking at breastfeeding we might want to refer them to the breastfeeding counsellor at this point before the baby is born we have a specialist ot that will look at um things like um sling support to help if the if the woman has got perhaps um arm weakness so they can have a special sling to hold their baby in while they’re breastfeeding we’ll talk about the the thought about storing breast milk as well in the freezer and so that if they have a period where they’ve got severe fatigue that um they’ve got breast milk to fall back on so we’ll talk about all of those things around breastfeeding and talk about postpartum support plan and what’s that looking like for them and making sure they have got support in place and then we’re looking at symptom management um lucy covered some of these things but we’re looking at um their bladder so frequency and urgency can temporarily increase because of the pressure of the uterus um we need to make sure the patients are um are aware that utis are more prevalent in pregnancy so just to be vigilant and be aware for the symptoms because we all know that um ms symptoms can be worse while some while someone’s got a uti look at mobility particularly uh during later pregnancy where the the increasing weight of the baby might have a cause extra problems with their mobility and posture and particularly obviously if that was already a problem beforehand looking at sleep sleep can be a problem in pregnancy fatigue um now we all all know that fatigue can be worse in early pregnancy um but you know patients sometimes get don’t realize that it’s because of that and not because um it’s not purely because their ms fatigue is worse um depression we always ask the um the patient if they had a problem if they’ve already had a pregnancy before do they have a problem problem with postnatal depression we had one lady that broke down in tears actually and said she’d actually she’d had postnatal depression her first pregnancy had never told anyone this was the first time she told anyone she used to go down to the end of the garden have a cry and then go back into the house so we just need to be vigilant that you know this could happen again and and just make sure that we’ve got the support in place should it happen domestic abuse and depression is increased in that first year postpartum so that’s just something to be aware of and from the latest embrace figures um which are figures are published every year um 13 of all women that died up to the first year after pregnancy died as a result of a mental health condition and that’s obviously something we really have an impact on and then we’ll also look at their dmt plan um for the rest of their pregnancy um so for example if they’re on to sample we’ll be thinking about this point about taking them off um in that last trimester and then thinking about what the plans are for for um dmt postpartum and in that breastfeeding phase so we’re looking at all of those things and also other services we might link them into so the disabled parents network remap which is for those of you don’t know an organization that is run by volunteers and will custom make equipment for people we had an amazing um adjustment to a pram for a patient a few years ago which is really good um and then there are online groups like um mom’s uk so um we’re looking at all of those things during that appointment i think the benefits of the clinic is that it’s individualizing care and taking ms symptoms and treatment into account at all stages of the pregnancy and we’re working collaboratively with the um midwifery team and i think the other big thing that we’ve learned is that the ms nurses and midwives have learned so much from each other we really have um i think both feel very much more well informed to be able to help our patients so just thinking about how you might be able to put this into practice now i’m obviously aware that not all of you are going to be able to have a joint clinic you might actually work in the community and not have access to uh midwifery service in the same way but ask your patient for details of their named with midwife so that you can share information with each other perhaps arrange to review your patient between 28 and 34 weeks and think about those things i spoke about earlier and that is what we do for patients that don’t actually have the maternal care accident george’s because obviously we have patients that have it at other hospitals so we would we would do that for them find out the contact details for your infant feeding team the safeguarding with midwife and the midwife for mental health problems so make sure you know you know um who who those are um because then if you do need them near the to you know the time of seeing someone you’ll know who they are um and find out the details of your birth reflections and debrief service so every uh maternity service has um something called birth reflections or a big debrief service so for those patients that perhaps have a traumatic birth or just want to talk through what happened um so make sure you know where to refer to if you need to just that awareness the increased risk of domestic abuse and depression you know if a patient doesn’t turn up for clinic and starts um you know being not responsive on the phone use that as a red flag because it may be that they’re disengaging with the service because of depression or because something else is going on at home so be persistent and make sure you follow these people up familiarize yourself with pregnancy consensus guidelines which have already been mentioned they’re really um very concise and straightforward they’re very helpful and then finally obviously consider setting up a joint clinic and i’m very happy if anyone wants to contact me um just for me to help them with how they might go about that so thank you for listening that’s what all i was going to see say and i’ll just hand it back over to aza now [Music] thank you so much sarah for the excellent talk and thank you very much for sharing your really excellent experience in collaborative work between ms and maternity services excellent so we now have time for questions um i will start off with um dr chong chung there’s a question asking about how do you manage the restriction of blue tech commissioning criteria uh in these cases i think this is referring back to the example that you’ve you’ve discussed so this patient obviously is now on fingolimod so how can we justify prescribing natalizumab thank you um hi rachel thank you great question um so what we do what i do is um we take these cases to our departmental mdt where it’s attended by at least um at least three three often more consultants but we’re a big center and uh one of the neuropharmacists and one of the nurses and using this example um we would go back to her you know retro especially go back to her pre dmt instead of criteria so in this case she met original criteria for natalizumab she came over for other reasons then usually but you know it’ll be consensus of the mdt that given family planning um would it be suitable and usually if we apply retrospectively we would mostly agree is suitable and we’ve also done that with a for example graduate quadrupen going back to let’s say someone’s on techvadera um you know we’ll go back to their pretech federa activity relapses and mri and if they meet if they had met criteria for quadruped then then usually the consensus will be okay to to go ahead if they don’t then then they don’t um yeah so that’s what we do case by case yeah thank you thanks very much karen um there’s a question to lucy um uh you mentioned that males who haven’t gone through childbirth could try away from this topic probably not for everyone um do you think this is an area where more education is needed um specifically tailored for males or those who feel less confident um to discuss this in in depth yeah really good question that probably that was quite a flippant comment of mine just to sort of put into that sort of presentation there um but i think often you are more confident if you have more experience and exposure so it probably is just more an element of of exposure so i guess you know the sort of education that one might think of is is the information that you talk through with your patients so they everybody knows you know kind of what what topics might be on someone’s mind um a feeling sort of happy to talk about um you know sort of looking start sort of family uh history of miscarriages you know it’s fertility sort of age um and just then the logistics of pregnancy um and sort of labor itself so probably more um like if you haven’t been through it more sort of just sort of knowing what that process involves so that you know when patients bring it up or if they sort of choose to bring it up there’s a bit more um openness and a bit more understanding of what that looks like for um halfway thanks lucy um so just just to refer back to your services in queen square so the preconception counselling do you also involve male males with ms or is it just tailored to to for for women within that really good question it’s a new service it’s only been sort of set up last year so in the midst of the pandemic so um you know it’s kind of telephone and video at the moment and i guess predominantly it’s it’s sort of women so rather than just having an ad hoc patient sort of contacts us to say that they’ve had a positive test or a gp kind of lets us know that they’re um you know had a problem it’s this more formulized sort of structured environment um but you’re right especially with some of our drugs clad mean for example you know it does affect sort of the male as well so that is something that we are looking to incorporate so obviously you know women that sort of get referred we do it sort of with their partners and i have spoken to only one male regarding sort of the issue but maybe that’s something that i need to sort of verbalize and say that people can refer into yeah okay and it’s just really kind of trying to support our also young males into into the process of decision making as well thank you um there’s another um question for you lucy um uh asking if you don’t mind sharing any paperwork uh when you’ve established the service in ucl to help with um other people’s establishing the same service um elsewhere um if that’s if that’s okay with you for preconception counselling yeah certainly and i think um dr chuck and i sort of did a separate business case for uh also part of the same business case it perhaps we could put our heads together and see what we can share in terms of ms academy and sort of what what was the evidence for setting up the service because i think that’s sort of what we need to justify is we need to make to say well this is a service that is needed for x y and z so we can certainly sort of share that information sure um and and maybe there’s a question for for both lucy and karen when do you think is the best time to start this conversation when when when do you think is it at the time of diagnosis or do you book a separate um appointment to discuss this because that’s quite a really you know it’s a lengthy discussion and quite sensitive i mean patients they’re very overwhelmed about the diagnosis itself let alone making these decisions about family planning um i can maybe go for that um i personally at a time of discussing the mts is quite a good introduction because most patients appreciate that drugs may have a effect on fertility or pregnancy and but i think as lucy and sarah bro said it’s all about proactively talking about it so i only look after adult patients so so therefore is relevant but you know you have 18 19 year olds coming with their parents and they may be a bit completely mortified i mentioned this in fact but um but it’s all about planting the seed it’s about the idea that there’s something that when you come to this life this juncture of your life we need to think about and i probably sometimes overdo it where every time i ask them but um but i think it’s an ongoing discussion and it’s all about raising their awareness that is necessary yeah okay thanks karen um and there’s another question saying do many patients harriet as a result of their diagnosis decide not to have children in your experience personally i i for my exposure um i can think of a few women that are seriously considering that between the two options uh they tended to be sort of the older sort of age group um so generally we sort of advise okay well why don’t you sort of look at you know get tested sort of look at the egg quality look at your egg reserve kind of see what the chances are and then you can be guided about time and so if they’re looking at a treatment that might be 18 but they can conceive in 18 months versus sort of something that can start sooner it will help sort of guide their decision um so i i think the majority do continue to sort of achieve those life goals um for the majority i don’t know sort of about yourself dr chang but i think so for me the majority sort of do yeah yeah yeah i agree i think most do i’ve had one patient who stopped at one and it was not for her ms she won’t have more but she i think she’s quite happy you know it’s it was a tough decision but she came to it with her with her partner i don’t know sarah what do you what do you see um yeah i i can just think of one case the same actually i had one child and then um was um considering she she’d already already um had to sabrine had to come off it for for a particular reason and was offered lemtrada and was um sorry not lemtrada octopus and was uh yeah really considering well you know do i go ahead with this or do i have another baby and and she was so worried about another relapse and disability that she she chose to just stick with one child and then go on with her dmt but actually for most i think i think you’re right the conversation needs to start really early um because then you give the patients more opportunity to have a think about their family planning and and um working around their dmt uh and for the vast majority of women um they they do go you know they they go on and have you know babies take precedence and you know that’s it you know that’s a huge important part of someone’s life so yeah i i agree thank you sarah um there’s a question for you sarah um how what borrowers do you find when when you were setting up your service um we actually had very little barrier because we were modeling it so first of all we were proactively trying to do something following a complaint we were modeling it on an existing service with instant george’s the epilepsy service and the one thing everyone was worried about was the capacity for a clinic room [Music] and so we we literally said well that’s fine we’ll just add one on to the beginning of our our ms nurse clinics as of when we need to see someone that’s pregnant because obviously you know it’s not happening every week um and therefore um that there really weren’t any other barriers um the the you know the the midwifery team were very keen um to to uh go down there so no we didn’t actually have many barriers at all what’s that i’m very reassuring i may add i’m delighted to hear that sarah i think we had a little bit more barrier than we would hope um maybe we need to complain um so just just to mirror on that theme is um so lucy’s been doing this role for a bit longer but it was only in april this year that we had a first sort of joined monthly clinic with myself involved with slightly more complex patients but the reason i said there wasn’t a significant barrier but if it was up to me and lucy we will have like a parallel clinic with with a midwife um with you know actual obstetric um involvement then and there so it’s a sort of one-stop shop um in my dream world that may even replace one of the antenatal clinic appointments you know it’ll be great for the patients but um that became just too complicated to to negotiate between the different departments and i think ucla is also you know exceptional in the sense that we have a different site the two buildings are about kilometer apart so in the end we gave up on that didn’t we lucy we just we just um carved out um work you know i dropped one ms clinic per month which didn’t really impact on the surface significantly and we just carved out existing time and then just sort of said that’s what we could do it um but luckily because lucy liaise with the obstetrics team did we have that as a as a resource so is yeah i think different trust will have different um yeah i mean we’re fortunate obviously we’re all on one site so that makes already makes it a bit easier and actually we are replacing one of their midwifery appointments um because um we we’re fitting it into to a time point because we don’t we don’t really want to give the patient an extra visit because you know you’re okay you’re trying to you’re trying to streamline care so it it you know it doesn’t really doesn’t hasn’t been a problem but i can understand if you’re on two different sites as well that makes it a little bit more complicated well that’s really excellent and karen so do you do a joint clinic with the obstetricians or is it yourself and lucy no so what we tried to do was um get a room next to the obstetrician clinic so we can dip in and out um and likewise you know for them to come and talk to us but it was proving to too difficult it also to be fair was during lockdown no one knew what the recovery would be like so it’s something maybe we’ll consider again at the moment is still sort of in the pilot phase and i think so far the feedback has been good yeah that’s really interesting because in sheffield we myself and dr tessa bonnet has also we’ve also established this service um luckily we’ve really had no barriers um we’ve been very well supported by both the obstetric and neurology departments so at the moment we’re running a preconception clinic jointly with with dr tessa bonnett she’s a consultant obstetrician and then a monthly joint um antenatal clinic but yeah we’re doing pretty much similar to you karen is that we’re trying to just see them in our ms clinic as an addition really to to to our regular patients because it’s obviously difficult to to to arrange but it’s different it’s different models but it’s it’s the whole theme is really um it’s just to try and make sure these patients are seen appropriately and they get the right support um and i guess my my really question is how do we see this ms maternity collaborative work in in the next few years how do we how do you think um because this is such such an important part now i mean there’s a growth in the um dmt’s now available for ms it makes our conversations with patients more more challenging as new drugs are coming through so so what how do you see how do you see that in in the next few years this is actually to all of you really well i i would hope it’s going to continue to get better you know hopefully the people listening to this webinar will go away and have a think about if they’re not already doing something what they could do to improve that collaboration with maternal cert medicine services so i would hope it is going to improve and i think we need um to lean on each other’s expertise in this area um so yeah that would be my hope and from my perspective i’m trying to arrange um some shadowing of also the specialist team working in the fertility sort of clinic at uch as well to get a bit more of an understanding around that could we sort of set up uh sort of our own sort of referral pathways if we’re then discussing sort of issues with patients um and they are having trouble conceiving is there sort of something that we can then celebrately sort of linking to ourselves other than having to sort of go by the gp sort of in that route and yet just embedding kind of what we’re doing at the moment well although it is set up um you know it has sort of been set up in the pandemic and just sort of you know ironing all out at the moment i also sort of sit in on the obstetric neurology clinic but again that sort of more um it’s not just ms patients it’s all neurology and so like i said sort of maybe we could work so that there is more of an mdt just sort of an ms mdt with with karen myself and an obstetrician or a midwife um further down the line just to streamline everything like sarah mentions um but otherwise for us it tends to tends to work quite well and i think we did a snapshot last year here and we thought we had about 80 patients and then sort of fast forward to august now we’ve got 180 so definitely now the you know people are aware of the services yeah people yeah yes so yeah that’s all very exciting and another question has come up has anyone linked with fertility services for patients needing support to get pregnant and what would you advise and this can include the group of patients who take years to get pregnant that’s an excellent question that’s a really good question um so i may take that so i it’s difficult um if they you know fulfill nhs criteria for fertility investigation treatment then um usually gp will have referred them um at this point usually they may then have a they may get referred to me or lucy um and we may have you know a general chat about you know fertility and a lot of women have questions about fertility treatment you know good good aditropin agonists and antagonists whether that has a you know impact on ms and what i say to them is it’s anecdotal you know there’s some antidote to report of relapses when people go through either the antagonistic or you know when they induce all suppressor hormones for fertility treatment but but overall by the time they get to that stage they want to conceive they want to have a child and i always say i wouldn’t let that affect your decision but perhaps what lucy is saying where we can directly um you know refer them will be nice it says take a middleman out of the way and for those who don’t have nhs criteria who want to freeze their eggs because they don’t know about the future then um it’s a little bit more difficult because that’s all private and you know all i say is where you can take my clinic letter to to whoever you see and they’re more than welcome to to write to us for further information liaising yeah yeah so that that’s also another important topic as we now um are using more stem cell therapy um you know it’s a similar context so trying to establish the links with the gynecology team and a pathway to refer these patients as well um so that’s that’s excellent this is all what we have i think we’re coming now to the end of our webinar i’d really like to thank um the speakers um for joining us today for this really exciting discussion really exciting um we know that for women with a with ms um choosing um you know and planning families is a really momentous decision it comes with a lot of added consideration so it’s a really important um topic that i hope that you know our services will stand to expand and get better and better for our patients so i’d really like to thank the sponsors rosh for sponsoring this webinar and thank all the ms academy team for uh organizing this um if um the audience have having any questions please post them through the website and we’ll try and answer them and and send you back the answers okay so have a good afternoon everyone and bye for now thank you thank you everyone bye-bye everyone bye
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MS Webinar: Pregnancy and MS

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