Development of Clinical Practice Guidelines in Different Health Systems

Development of Clinical Practice Guidelines in Different Health Systems

hi my name is jamie fletcher i am a research coordinator at yorkshire mess mac and i’m joined today with my colleague ben vincent uh from the open university uh their pronouns are they them we’re going to be presenting to you some of our findings from the icta project which is the integrated care for trans adults research project and just a little bit about our team i am it’s an interdisciplinary team and uh it’s a partnership between the open university lgbt foundation and yorkshire mesmac and the research team is made up of a mixture of cis and trans researchers so in terms of content of our presentation today i’m going to give you a little bit of a context of uk trans healthcare for those of you who don’t know and then we’re going to focus our attention to three of the case studies from uh our research project so and the actor project started over a couple of years ago and and we put out a uh a survey nationally which over two thousand trans people uh trans adults uh filled in and from that we were able to invite people to be interviewed as part of a number of case studies and we’re gonna focus our attention just to three of those today uh uh and and i also share with you some of the views from service users and staff about how to improve uh trans health care so a little bit of context for uh uk trans healthcare then so uh so over here we have a free national health service uh and through this we’re able to uh go to a gp and and get a referral to a gender identity clinic now there’s a number of gender identity clinics um across the country uh but there’s only a small number of those uh relative to the uh the amount of trans people that there are and these gics operate a diagnosis model which can be seen as being very pathologizing and gatekeeping of people’s access to treatment and it’s also worth noting that the all gics work differently and that there is no standardization or consistency from gic to gic uh there has been a few pilot uh services uh recently in primary care but these have a narrow access criteria and the only other way that people can access care is to um uh to pay for it privately um and uh uh if they’re in that sort of fortunate position um or we see people self-medicating and this slide that you see here is um is a diagram of uh a pathway of moving that you can move through um at a gic uh so this is from uh from case uh study one and it there’s a lot of information here so i’m not expecting you to take it all in right at this moment so um please do access the slides at a later point and and and look at this and interrogate it a little bit further but what i want to draw your attention to is about the length of time it takes to go through the service and so from referral from your gp to your first appointment at a gisc that can be two years and four months so two years and four months from that referral to the first appointment and then from the first appointment to the time that you see an endocrinologist where they can prescribe you and hormones that’s a further two and a half years so we’re looking at nearly five years just to kind of move through to get to a place of of obtaining a prescription uh for hormones and so it’s a really lengthy time and you can see there’s multiple steps and and hurdles to overcome through this so our three cases uh case study one is a is a gender identity clinic that’s collaborating with a charity and community organization in order to deliver peer support to people that are on that referral waiting list of the gic uh case 32 is a gic doing something very similar to case study one but with significant differences to that pathway and that’s significant differences by integrating with primary care and case study three is a charity community organization uh that’s providing lgbtqa plus and health care training in primary care settings and giving a certification of good practice and see those so those are our three cases that we’re going to share with you uh today i am so case case study one so a bit of kind of background information we’ve seen that pathway and we’ve seen that there’s a long uh waiting list to be seen at a gic so um so gi sees a this particular gic from case study one could see that there’s a waiting list and see that there’s a problem of uh of people uh waiting an extraordinary amount of time without any support and some staff were and were aware of um community organizations and and and peer support uh organizations doing some uh really interesting work locally uh and that they’re able to respond much quicker uh to give support to people and so a collaboration was set up and a relationship formed with um with a community organization uh and the gic and together they were able to hire and some trans peer support workers now initially those peer support workers their role was very unclear and i wasn’t unsure about what exactly that they could do or achieve this is a very new thing for the service but they did go on to create a number of support groups and do one-to-one peer support but also most notably i am managing to to set up a uh a trans only and swimming session and it’s important to to to know though that this this role as a trans peer support worker i am there are significant limitations that role and about what they could achieve uh given um uh given their their knowledge and their and the time that they they had and their resources and as as well as um their limitations over um what they’re able to um uh help with the community i can hear some i am some noise in the background there i don’t know if if someone’s i turned a turn the microphone on that but if you bear with us i am yeah let’s let’s uh let’s move on with that slide so there are uh a number of uh comments and and and things that we we’ve we’ve found out from people and service users value the variety of support groups and how that they were facilitated and so this particular service he says said um i also started going to plush 25 green and she always directed towards positivity and she was good at setting boundaries in a way that made the environment feel safe and yeah i talked about things that were very difficult and then she would have fame reframe it um that’s a our speaker jamie has just been muted i’ll unmute myself again there i am and the next as service users i’ve been talking about i am a trans swimmer support group that was widely appreciated and providing access to activity that otherwise poses significant barriers and this is a staff member saying that what we’ve got is we’ve got people who’ve not been swimming since they were a kid because of fears and fever was just so overwhelming in terms of people’s stories and saying how positive this is for their mental health and their physical health and it just really uh proved the need uh for it and the desire for it uh we were getting 30 plus people each week and that’s amazing uh but on the other side of things um outreach workers were overloaded and trying to support too many people there’s a an awful lot of people uh on that on that waiting list uh the desperate for for attention i am and need uh needs that support and so the service you said i i just get this very strong feeling that gender is extremely overworked and she’s not able to respond to messages because there’s just too many um outreach workers couldn’t give people the main thing that they wanted hormones and you know people were really frustrated they wanted hormones that was the initial main thing and i could help them do their depot and i could help them with uh links of things or just talk to them as a peer and give them support but it very much felt like firefighting that’s from a staff member there that uh so i am yeah and other service users felt that the the whole system is broken and needs abolishing i’m gonna move on and pass over to my colleague thank you did i hear a call saying five minutes i i couldn’t quite make out what was said yes thank you okay so i’m gonna have to move really quickly um case study two i need to contextualize we’re looking at um a case study whereby context of care is that it differs across england scotland wales and northern ireland they can have different rules about how healthcare is provided and in this context there was an older model which had even more gatekeeping involved where one had to pass through mental health services before being able to even access the weights for the gender identity clinics the new service that exists has got integrated teams that exist within primary care who people are referred back to as well as this collaboration with a community organization so i’m going to very quickly move on and so sorry to be rushing here um people talked very clearly about having had better experiences in this context compared to other clinics that they’d attended a lot easier to talk to and one may one very interesting thing was that doctors were actually using social media to communicate with and talk to their patients which made it much much quicker to access information people talked about clinicians even talking with them while there was a multi-disciplinary team meeting discussing their care going on so they could have live engagement with decision making which is fantastic and this served to really speed up care this particular context is the only clinic in the uk where waiting times seem to be decreasing rather than increasing which is a really really important thing to acknowledge even if the case is anonymized and sorry that i’m zooming through these but it wasn’t all positive because waiting times still fundamentally are an enormous problem across the entire of the uk but we have people recognizing that it wasn’t individual staff members fault there were some people who talked about how the coordination between different parts of the service were failing them still but also difficulties with actually being able to reach the clinic directly now this exists in tension with what i’ve just said about the availability of doctors through social media but it kind of shows that that isn’t a universally accessible or successful approach so finally our final case study is this community organization that is certificating good practice and demonstrating that people have had training um and to get the highest level of certification they have to demonstrate engagement with bridging prescriptions and trans status monitoring which are both very valuable for trans communities um so we see people talking about how um their practice had had information to support them in changing their gender marker which they think helped make that work more smoothly that they weren’t having people announced as mr or miss or mrs when they were being called in which was very helpful as well and someone also talking about how they were supported as a trans masculine person in getting support with smear tests and their testosterone injections in a timely manner which suggested a cultural competence had been acquired in this practice um however the fact that a clinic had been trained didn’t necessarily mean they wouldn’t make mistakes didn’t guarantee all staff had had the training didn’t guarantee all staff remembered the training um which is a somewhat inevitable element but also because people carried trauma from their historical medical interactions or had been left with a real sense of distrust the training was unable to necessarily attend to some of those problems that could create barriers to healthcare so very very quickly two final slides and i’m not going to be able to read the quotes but to highlight what people were saying we had staff from within clinics talking about how a completely new system of care is needed acknowledging that where they worked just wasn’t able to handle the number of patients and wasn’t able to engage in a way that was sort of culturally competent and some people suggested about how funding needs to be centralized in order to better standardize care pathways across the country service users talked about all sorts of things including these digital communication to better improve care training so that trans healthcare isn’t viewed as fundamentally specialist moving it into more general settings um a real need to attend to intersectional marginalization um in order to attend to racism sexism classism uh ableism within healthcare which i think is fair to say disproportionately affects trans people and ultimately calls for abolition of the diagnostic and gic model but people have mixed ideas about what needed to happen there whether we’re ready to move into primary care oriented system acknowledging this was going to take time and we can talk a bit more about what people said in our questions because i’m aware we may have run over but thank you very much for your patience there uh please hello can you hear me yes i can start okay uh okay uh so my name is jana uh i’ve been involved in trans activities in russia for the past 11 years i recently graduated from the university of gothenburg with a master’s degree in public health today i will talk about the development of critical practice guidelines on transcal in russia uh first i’ll talk uh about some historical and legal background but i can’t ah okay um so medical care for trans people has been practiced in the soviet union since late 60s and in 1976 the polls were issued that permitted legal gender recognition those were intended for intersex people but trans individuals used them as well however for two decades medical care for trans people was nowhere formally systematized only in 1991 several months before the dissolution of the soviet union methodological recommendations on the change of sex were approved by the ministry of health those were based on the fourth version of the standards of care they introduced a number of terms which to this day remain popular for russian medicine such as uh nuclear and marginal transsexualism as well as sexual reorientation which is in an accurate translation of sex reassignments the guidelines recommended assessment in a psychiatric institution and a one-year real life test which was a worldwide practice at that time what was good about those recommendations lethal gender recognition was before the start of hormonal therapy surgeries okay i’m trying to show another slide uh okay okay uh in 1999 soon after russia adopted icd-10 the ministry of health promulgated a clinical guideline for psychiatric disorders which included transsexualism according to the definition and differential diagnostics transsexuals would not have inter sex traits schizophrenia dual role transistors and homosexualism the guideline was repealed in 2012 after which we had a legal vacuum there is no document regulating diagnostics and treatment so each doctor can choose whatever they like and that’s not bad because there are some friendly doctors that can issue the diagnosis in one week but what happened next uh two years ago in 2019 the ministry of health issued a decree by regulating the development of clinical practice guidelines the guidelines will now be developed by medical professional non-commercial organizations and approached by the scientific practical council what’s important they must be developed according to the principles of evidence-based medicine so this decree basically outsourced the development of clinical guidelines to medical associations and this is where we as trans activists found an opportunity to intervene and i will talk here about our work uh so in 2019 we established a group called trans people uh for access to health care uh it is still unregistered in an official way but we are planning in to register two organizations a patient organization and a medical professional non-commercial organization it is important for bureaucratic reasons to have both of them although of course not all trans people like to be called patients our main goal is to develop clinical practice guidelines and other medical documents related to trans health however we faced uh many challenges in our work unfortunately only doctors can be members of their medical organization as a public health specialist i cannot enter this organization and we don’t have trans people who are doctors so this medical organization is led by cisgender men which is not good even though those doctors are friendly they are not competent enough they know nothing about their latest developments in international trans health and most of them don’t read in english furthermore they don’t have competence in evidence-based medicine and cannot write clinical practice guidelines of sufficient quality another problem is that they have low motivation they need to be pushed all the way to do anything next we faced obstacles when trying to register both organizations with the ministry of justice we didn’t want to use pathologizing terminology such such as transsexuals we want to use gender diverse um but the ministry said there are no such patients and no such disease so we’ll probably go to court but currently we don’t have money for that finally there is a scarcity of data to make evidence-based recommendations and i will talk more about that later um okay so first we had to decide how to entitle our recommendations despite the adoption of icd-11 by the world head organization russia still follows icd-10 so the terminology is still transsexualism and gender identity disorder the good news is that the title of the recommendations should not necessarily follow icd 10. who probably choose a combination of gender dysphoria and gender in congruence it seems we can’t get rid of gender dysphoria altogether because the term is used widely in epidemiological studies that we rely on since uh clinical practice guidelines are written according to evidence-based medicine uh we need to prove effectiveness of medical transition to do that we conducted a search in scopus web of science and pubmed with the following terms and in the end we found seven eligible systematic reviews you can see the list below we assessed the methodological quality of those systematic reviews according to the guideline developed by the russian ministry of health and found that all of them had high or satisfactory quality we also found that the results were coherent namely medical transition improved the quality of life and various psychosocial outcomes third all the outcomes were important based on these criteria we can give a strong recommendation of in favor of conducting medical transition procedure and that’s a good result however it’s not so good as it looks on the surface epidemiological studies are not specific on the hormonal treatment regimen or type of surgery some studies mix them all together so while we can recommend medical transition in general there is a lack of data on specific procedures and we are obliged to rely on evidence of low credibility such as consensus of experts the next question we had is whether we should include legal previous soviet and russian guidelines headed included so we decided to mention it as well but the guidelines are the standard template the list of sections such as diagnosed treatment and rehabilitation can procedure be a part of the treatment or rehabilitation uh in the end we will be helped by this article that gives evidence that legal gender recognition improves mental health so yes we decided to include that in the treatment section um another issue we had yes is how to include the informed consent model in the guidelines unfortunately there is no epidemiological evidence to support the choice of informed consent model over the traditional gatekeeping model the other problem is that we are not sure that it’s legally possible for in the chronologists to prescribe hormones without medical indications confirmed with a diagnosis according to the russian legislation so this is a work in progress but we hope to succeed one day thank you now we have and millet good morning [Music] i am michele i am a social worker i live in buenos aires argentina i specialize in mental health and i work at a health mental health hospital that belongs to the i also work at the ministry of health of the nature i’m also a drag queen a king and i wanted to present a book that we published towards the end of last year it was published by punto pencils editorial publishing house this is a publishing house that mainly focuses on publishing uh trans voices both in poetry and this is a collection of essays written by trans people the book is called sexism and health and it aims to address the connection of these two topics from a trans masculine perspective i especially wanted to focus on three ideas because we don’t have much time but before that i wanted to thank you all for this space thank you to the organizers thank you to to all this effort uh of holding this event in three languages some languages are missing but we know that this is a huge effort you’ve made especially from the people for uh for the people from the global south many people from the global south uh have no opportunity to learn another language and international or attend to exclude us in this regard sometimes to us as activists or healthy we don’t have money for that finally there is a scarcity of data to make evidence-based recommendations and i will talk more about that later okay uh so first we had to decide how to entitle our recommendations despite the adoption of icd-11 by the world health organization russia still follows icd-10 so the terminology is still transsexualism and gender identity disorder the good news is that the title of the recommendations should not necessarily follow icd-10 who probably choose a combination of gender dysphoria and gender in congruence it seems we can’t get rid of gender dysphoria altogether because the term is used widely in epidemiological studies that we rely on since clinical practice guidelines are written according to evidence-based medicine we need to prove effectiveness of medical transition to do that we conducted a search in scopus web of science and pubmed with the following terms and in the end we found seven eligible systematic reviews you can see the list below we assessed the methodological quality of those systematic reviews according to the guideline developed by the russian ministry of health and found that all of them had high or satisfactory quality we also found that the results were coherent namely medical transition improved the quality of life and various psychosocial outcomes third all the outcomes were important based on these criteria we can give a strong recommendation of in favor of conducting medical transition procedure and that’s a good result however it’s not so good as it looks on the surface epidemiological studies are not specific on the hormonal treatment regimen or type of surgery some studies mix them all together so while we can recommend medical transition in general there’s a lack of data on specific procedures and we are obliged to rely on evidence of low credibility such as consensus of experts uh the next question we had is whether we should include legal soviet and russian guidelines headed included so we decided to mention it as well uh but the guidelines are put to a standard template the list of sections such as diagnosed treatment and rehabilitation can procedurally be a part of the treatment or rehabilitation uh in the end we will help by this article that gives evidence that legal gender recognition improves mental health so yes we decided to include that in the treatment section five minutes another issue we had uh yes is how to include the informed consent model in the guidelines unfortunately there is no epidemiological evidence to support the choice of informed consent model over the traditional gatekeeping model the other problem is that we are not sure that it’s legally possible for in the chronologists to prescribe hormones without medical indications confirmed with a diagnosis according to the russian legislation so this is a work in progress but we hope to succeed one day thank you thank you for the presentation now we have and millet good morning i am a social worker i live in buenos aires argentina i specialize in mental health and i work at a health mental health hospital that belongs to the i also work at the ministry of health of the nature i’m also a drag queen a king and i wanted to present a book that we published uh towards the end of last year uh it was published by punto pencils editorial publishing house this is a publishing house that mainly focuses on publishing trans voices both in poetry and this is a collection of essays written by trans people the book is called sexism and health and it aims to address the connection of these two uh topics from a trans masculine perspective i especially wanted to focus on three ideas because we don’t have much time but before that i wanted to thank you all for this space thank you to the organizers thank you to to all this effort uh of holding this event in three languages some languages are missing but we know that this is a huge effort you’ve made especially from the people for uh for the people from the global south many people from the global south uh have no opportunity to learn another language an international foreign to exclude us in this regard sometimes to us as activists or health workers or as trans people simply it can be very difficult for us to have access to a global perspective of what we are how we are doing as a community what uh is the situation of our community in other countries and of course we need to try and make an effort and read and and read the news etc to me it’s very clear that we need more international events even if it’s very difficult for me to have a virtual events they need to be virtual on and online because if these events are just in person events then once again those who can buy and pay only those that can pay an airline ticket or an enrollment fee will be attending so thank you to the organizers for this huge effort i’m sure this has been very rewarding but very difficult as well i would like to focus on three main ideas in the book although there are many more uh i it is uploaded uh on the hoover platform so you can have a look at it there it’s now available only in spanish but we’re now translating it into portuguese uh because we want to cater to languages from the global south and we want to really have a conversation with a with our neighboring brother country brazil first of all i talk about a category that i have built to identify myself i am a trans masculine lesbian and i felt the need to create this term because when i started to use masculine pronouns when i uh had a surgery there wasn’t a category that would represent me this is a category that is that appears and this is nice when you invent things when you’re when you’re older it it emerges in a soft way because it knows that there are no hard or clear-cut identities so it’s a category that appeared and but might be left behind at some point and that makes it particularly powerful i felt the need to create the category because when i started using masculine pronouns and i deceived i decided to have surgery to intervene my body everyone assumes that i’m a a trans man and that move erases my lesbianism in a way there is this new identity inscription and it eliminates another identity so that happened a few years ago and at the time i didn’t know anyone that was trans masculine and lesbian that considered themselves lesbian i knew i knew a trans men that maybe didn’t know that they were lesbians and i also knew trans people that admitted uh that they had been lesbian lesbians but but that through the transition were not lesbians anymore there was this elimination of the of the previous identity so i felt the need to create this new idea and i thought it was very i think it’s important to make the effort to share these identities because i trust that the more we can use we can create categories in the world it is clearer that gender is a social construct so we can make it be whatever we want it to be with the uh different types of resistance this and political struggles it entails if we do this it becomes harder to to justify that it’s biological of those terrible things that people say something else that i would like to share is that about the book is that i have called it the sea sexualization it takes cons is i take on the a g valentine’s idea of the heterosexualization of the public space this is a 90s book it really blew my mind from the first time i read it and it makes it very clear the public space is is not naturally heterosexual but rather that it has been heterosexualized through an appropriation practice i also uh take two concepts from flores an argentinian lesbian woman who talks about this hetero sexualization of educational practices and this is connected to what valentine says valentine says that the space has been heterosexualized and then val says that we need to unlearn that heterosexualization and we need to create this degeneration of our public spaces and of our schools and i also talk about the deep pathogenization pathogenization of the trans collective i believe that the campaign in argentina called the patho trans de pato trans in spanish i believe that this campaign marked a turning point in global transactivism there was international coordination uh events simultaneous events uh were held throughout the world and it was essential really regardless of what happened after this this path towards the pathologization there is also this need to this the need to meet globally became evident through that campaign and with these ideas of d pathologization d heterosexualization i suggest d c sexualization as a process to unlearn see sexist perspectives and practices mainly in health because it’s the the field i’m interested in but also we need to understand that sea sexism and is strong so this sexualization is also very strong if there is a the sixth sea sexist practice we have the opportunity to unlearn it and to create a new learn to live in this world finally the last idea i wanted to share with you which i believe is the most interesting one is this uh idea i started to come up with these ideas as i am a mental health when i was a mental health resident in the city of buenos aires i was the only trans person working in that hospital five minutes thank you and i began to identify different uh sexism uh forms when we need to meet as workers and not just as users this is just a situation as i was writing a book a non-binary social worker friend wrote to me also a resident at a hospital and they asked me if i changed my registration in the digital system as a as a professional i explained that my hospital lacks a digital system but that i had changed my professional document and my stamp on my ceo which is what i have to use every day for us health professionals and trans people when we haven’t changed our national id cards it’s it’s kind of complex when you prescribe something to a user and you the name that appears is different than the name you introduce yourself with and professional health professionals signature and stamps are something tools we use every day so i told them that i had changed that and they tell me that they have requested a change of name in the clinical records as a hospital user and also the the professional signature they said that the the clinical records were changed immediately but the signature changes the professional was not being made in argentina we can enroll in any institution thanks to any the name we want thanks to the wonderful gender identity law we have so this friend gets their name changed as a user but not as a professional so that really uh shows the situation in mental health in health institutions in general this is a country that has an uh a vanguard law they let’s say they can picture us as users that they they do not expect us to appear in other areas of life this is why i come up with this category called unexpected workers we are trans health workers and we are unexpected in hospitals and universities in uh in a surgery and this is a suggestion and some criticism to this congress and the organization it also happened to me that when i started to come up with these ideas i was an unexpected professional because i’m a professional in that hospital i am a social worker and over time i noticed that that excluded the experience of many other trans people that that might have but also have a strategic perspective on sea sexism but they’re not professionals so this is why i think i propose the concept of unexpected workers are not unexpected professionals because there are other people who are uh who do administrative work uh cleaning work um who are security guards etc they also have a perspective and a strategic position when it comes to how sex see sexism works in that space i would like to read out to you just uh accept an accept from the book the people that live in health institutions know how different things can be uh from different perspectives depending depending on our task or work we have we have a different spaces and we can identify different situations in a way we could say that depending on who we are and what we do we inhabit different institutions within the same institutions we don’t use the same toilets we don’t go to the same meetings our voices have different values in the different mic institutional microworlds the physical spaces where we rest work have lunch or change clothes are different what we do and people we do it with are different our position in the institutional hierarchy are clearly different and also our social class our skin color stories and wishes that will be different as well i think it is clear that the perspectives of each health trans worker will be different because our the perspectives are different as well and i’m really passionate about this idea of sharing the ways in which uh the ways in which we feel and identify sea sexism because i’m sure that many are similar because although i know about the capacities of pressure systems they can inhabit different wealth i also know that they are repetitive when they reproduce we need to see how humiliation and what the value in generalized also when people assume your gender when they look at you and when they discredit your identity in each pathway within the institutions that are intrinsically sexist this is also powerful and i can anticipate that this power is huge it happens to me that it finding the social uh justification of my issues really helps me and i can better understand how sysexism works and i can imagine different ways in which i can bring it down i i dream of us being many together and i’m sure that all of this can be transformed thank you very much thank you for your presentation uh the next one is recorded so i’m gonna share my screen hi everyone my name is evelyn callahan and i am a research fellow at the open university uh i’m michael patch from i’m a researcher at lgbt foundation and today we are going to be presenting uh healthcare experiences of older trans people and disabled and chronically ill trans people in the uk preliminary findings from the exit project so the ixa project or integrating care for trans adults is an nihr funded project which aims to develop effective models for the health services needed to support trans adults before during and after they are seen by gender identity services specifically the focus is on effective integration of care or how to make health care more enjoyable so through our projects we conducted a screening survey to get a baseline of what people’s experiences of healthcare were and to recruit people for our case studies and community interviews the case studies you will have heard about in in a previous presentation from our colleagues ben vincent and jake fletcher uh but we’re going to be talking about the community influence so within those interviews we have uh spoken with 91 trans people so far and these are ongoing as we are still recruiting to certain subgroups of community um so with these interviews as we mentioned there are subgroups that are populations of particular interests that we think will have a noteworthy experience when accessing healthcare as trans people who also experience other forms of oppression so the two we’re talking about today uh [Music] materials for a variety of audiences including clinicians mental health professionals and the trans community themselves so our findings from our older population and this is uh was 50 plus in our particular sample was uh aged between 51 and 18 years of age as you saw so uh we had a few key findings from this group first of all uh was waiting of course this is something that is a concern for all of the people in our sample it was a very wide ranging experience but there is a particular uh with our older group so people being seen for a first appointment at gic’s now have been waiting up to five plus years now first appointment is not uh there’s no care provided at the first appointment that’s just just to get in the door of the gic and of course people being referred now have been waiting uh will have been waiting exponentially longer when they when they do get seen so waiting is a huge issue across the population but it took on an additional urgency for older participants as one participant explained i don’t know how long i’ve got none of us do but you know i’m at an age now where i’m looking back more than i’m looking forward so i would like to think that when somebody of advancing years comes forward and says look you know i’ve been miserable for the last 59 years i’d like to live out my life as the person that i really am they would sit up and say yeah okay we’ll do what we can right away rather than saying oh well you’ve got to wait behind all the 18 year olds they’ve got another 60 split you know hang on a minute that ain’t fair so this participant is expressing expressing frustration that many of our participants in this group uh expressed which was that they felt that they had already been waiting many years to uh to transition to to you know live as their authentic selves and that they were being asked to wait even longer and that that was quite disrespectful as well as the the advantalizing attitude that some felt they were uh subjected to they felt that they were old enough to know their own minds and should be able to consent uh to whatever they they wish to do for their own bodies and uh finally that kind of urgency of not having enough time left to to you know to enjoy it to to enjoy the kind of results of the process another uh one of our kind of key findings was with transition related health care so those kind of specific health care services once they were able to access them so additional considerations for older people taking uh hormone replacement therapy or hrt uh that can include using estrogen patches uh or gel instead of pills us could be similar with testosterone gel instead of shots to decrease the risk of heart disease stroke and blood clots now what’s really important to note here is that this does not mean that older trans people should not be taking a church here can’t take hrt safely they may wish to use these different forms as i’ve mentioned but they may not get along with those different forms as well and it’s all about informed consent at the end of the day it should be uh it’s called all of the risks but hrt is important medication uh so it should be be valued that way and they should be able to make the make the decision for themselves considering the risks about what’s right what’s the best path for forward for themselves uh additionally uh similarly an increased surgical risk this is for any surgery the uh as you get older there’s an increase increased risk but again that should be up to the individual to make the informed consent themselves but some of them were concerned about those risks and and maybe uh worth selecting not to go through with certain surgeries for that reason others felt that they were too old for surgical intervention not in a medical sense but in a social sense uh in a kind of personal sense that there was no point uh that they didn’t have enough years left uh to you know to enjoy it to utilize it um you know for lower surgery uh many of them describes not being sexually active and not planning to be so so not feeling um that there was a reason for themselves to to to have that intervention additionally hair removal is more challenging on gray and white hair so that’s a consideration for our older population uh and all of these above examples are are relevant to people transitioning later in life some of them uh like htr are ongoing concerns but our historic transitioners as well people who transitioned many years previous they faced a tertiary care system so they were not able to get referred directly to the gender identity clinic they had to be referred through mental health services first so there was that extra barrier and other barriers that were unique to their historic experience as well and then finally non-transition related health care so social care and end-of-life planning was a cheap concern for this group it’s something they were thinking about something they were worried about as well as appropriate screenings so in the uk we have screening programs for several diseases mainly for cancers um so we have this this one participant’s experience of trying to get a mammogram uh and as he described i developed this breast abscess and the gp’s advice was go and get yourself a mammogram so i rang breast test whales to get a mammogram and was told that we don’t see trans people in this service and i was actually shocked because i thought they did i thought they actually ran male clinics but they don’t so even if you’re a man with breast cancer or if you’re male identifying you have to book a mammogram through your local hospital rather than through the breast test people and it usually takes longer because you’re accessing a specialized service because they don’t run male clinics very often so for this individual this uh was actually quite an urgent situation it was not a routine uh check it was actually symptomatic they were symptomatic and seeking a mammogram uh at the time we had spoken to this person this incident had happened several months previous and they had to that date not been successful in accessing a mammogram and this was an ongoing issue for him so this is you know this is very concerning that and a pretty blatant example of discrimination in health care against this against this person because of being trans so our key takeaways for this group are that decreased waiting lists are needed uh through an informed consent model to the uh we need to support people that are transitioning later in life and more research it’s medical transit interventions for older people as needed and a need for appropriate services through the ends of life and beyond so now we’re going to look at some of the key findings from our disabled and chronically ill sample starting looking at their experiences of non-transition related healthcare um so a lot of times there were instances of mistreatment and individuals were unsure whether this was because of transphobia um this was also made more complex as there were more often more healthcare interactions and so there were more possibilities for negative experiences and incompetent care uh a frequent experience was uh struggling with gendered hospital awards whether this was um not being given a choice over the world which they feel more appropriately reflects their gender or the ward which they feel the safest in um and again this should always be person-centered and be led by the individual as to where they would like to be placed with an award there were instances of medical trauma as well so people experiencing um complete mishandlings of their disability or chronic illness and there were lastly instances were quite frequently of self-management of care this is where people were having to manage their condition or their multiple conditions and having to be an expert in their own right in some instances this meant foregoing some health care in order to access others whether this was because their conditions were related and one needed to be resolved first before the other could or whether this was because they didn’t have the capacity or the energy to manage multiple specialists and manage multiple relationships with others this ties into transition related healthcare as well as this for some people was also that they would manage alongside this and the specialist they would manage alongside this so when looking at transition related care there are some transition steps that are complicated by conditions as we mentioned before with some of the people in the older sample there are certain uh risks that increase such as strokes and heart disease and these are these will be prevalent in the disabled and chronically ill sample as well a disability or chronic illness can also cause delays or prevent care at every step of the pathway and that includes the gp referral to the gender identity clinic which is how people are able to spend access care it also include referrals from the gic to access from surgery so we have a quote here from someone who wanted to get a referral from their gp to their gender identity clinic but was struggling and was unable to access that and so in their words so i literally went to my gp with a list of information for them so i actually did their job for them slammed it on their desk and said right refer me now unless you want the dead body in 48 hours and it’s this level of extremity that we particularly found disabled and chronically ill trans people are having to go to in order to get the care that they eat so then lastly looking at the absence of care which often occurred uh this could be focused around a particular condition whether that was something that was under researched and not fully known or supported uh or due to a lack of diagnosis in some instances where people would struggle to access diagnoses for clinicians um there were also instances of what procedures were accessible to people so there was one instance where someone couldn’t have a sigmoid colonoscopy vaginoplasty [Music] because that just wasn’t available to them due to their ibs but the procedure that they would want which was a peritoneal vaginal opacity isn’t available on the nhs system currently and then lastly on this point of absence of care and this kind of ties together the experience of disabled and chronically ill kinds of people together is this quote from this one person talking about why they decided at one point in their life to delay a referral to a gic so there was at least a peak i’ve had seven different specialists seven or eight different specialists at the moment i’ve only got the two that i’ve just been signed from and now i’m back waiting for other specialists but it’s been hell it’s a full-time job and honestly i wish i could do anything else and i think what makes this case even more challenging is that since that incident they had then gone on to seek referral to a gender identity clinic only to be denied relating to their disability and so this is an instance outright where this blocks disabled trans people from being able to access care they need and so our key takeaways from this are an increased level of autonomy again through an informed content model supporting support for people exploring transition choices again this is kind of key to the informed consent making sure that they understand the risks that are there and are supported by services when they make their choice as to what they want to do and then lastly more research into how medical interventions can interact with various different conditions for different individuals okay thank you everyone for the presentation we run out of time so we can do the triangle right now but you can uh there are an option in google where you can ask questions and what your participant can answer and for the next session we you can access the link to uh and francisco passes the information also on the on the job thank you everyone you
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Development of Clinical Practice Guidelines in Different Health Systems

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