{"id":35642,"date":"2023-06-27T11:00:22","date_gmt":"2023-06-27T11:00:22","guid":{"rendered":"https:\/\/news.cancerresearchuk.org\/?p=25852"},"modified":"2024-11-03T15:12:27","modified_gmt":"2024-11-03T15:12:27","slug":"how-can-we-improve-lgbtq-cancer-care-that-cancer-conversation","status":"publish","type":"post","link":"https:\/\/ogkologos.com\/en\/how-can-we-improve-lgbtq-cancer-care-that-cancer-conversation\/","title":{"rendered":"How can we improve LGBTQ+ cancer care? \u2013 That Cancer Conversation"},"content":{"rendered":"
<\/div>\n

Jacob (narrator)<\/span><\/b><\/p>\n

Hi, and welcome to That Cancer Conversation, the podcast from Cancer Research UK that brings together the science and the stories behind cancer, with me, Jacob Smith. <\/span> <\/span><\/p>\n

Beating cancer means beating it for everyone. And crucial to doing that is tackling health inequalities, unfair and avoidable differences in health across the population and between different groups within society. Health inequalities can exist between groups like ethnic, socio economic, or gender groups but today, we\u2019re diving into the inequalities faced by one group, in particular, the LGBTQ+ community, and what we can do to make cancer care more inclusive for everyone. <\/span> <\/span><\/p>\n

But before we do, it\u2019s important to caveat that LGBTQ+ people are not a homogenous group. Each person\u2019s experience will be unique. Not every inequality that we talk about in this episode will affect every member of the community, and there will be inequalities some people face that we don\u2019t touch on here. <\/span> <\/span><\/p>\n

Importantly, intersectionality where multiple aspects of a person\u2019s identity like their race and sexuality overlap can play a big role in the health inequalities they face. And we need to take each characteristic into account when working towards reducing overall health inequalities. <\/span> <\/span><\/p>\n

We\u2019ve got another episode on inequalities lined up for later in the series. So, to hear us cover more about them, make sure you subscribe to the show wherever you get your podcasts or send us an email at [email protected]<\/a> If there are any other topics you want us to explore. <\/span> <\/span><\/p>\n

To get some insight into the inequalities in cancer care in the LGBTQ+ community and what needs to change to reduce them. I spoke to Dr Alison Berner, a medical oncologist, academic clinical lecturer, and speciality doctor in adult gender identity medicine.<\/span> <\/span><\/p>\n

Alison<\/span><\/b> <\/span><\/p>\n

These inequalities occur all the way across what we call the cancer continuum. Some of those inequalities are quite systematic. So, say for example, at the moment, if you are registered as male, you cannot be called by the current cervical screening system. Some of those inequalities are quite personal to you. So, you may experience discrimination. Or you actually might just anticipate discrimination by those around you or what you\u2019ve heard in the community.<\/span> <\/span><\/p>\n

Jacob<\/span><\/b> <\/span><\/p>\n

As you say, there\u2019s a big range of inequalities that an LGBTQ+ person might face. So, let\u2019s be a bit more specific. Some of your research focused on cervical screening in trans men and non-binary people. Can you talk me through some examples of barriers you found there?<\/span> <\/span><\/p>\n

Alison<\/span><\/b> <\/span><\/p>\n

Some of the barriers were related to dysphoria, which is the felt sense that what\u2019s happening is not congruent with your gender, and it brings you a sense of discomfort, and that might be related to the procedure itself, because of engaging with the part of the body that a trans masculine person doesn\u2019t identify with. But it can also come from so the information materials that are sent out to you, or the way that you\u2019re invited might be incredibly triggering, and you may not want to engage because of that. <\/span> <\/span><\/p>\n

But what\u2019s really important to note is that not everybody gets body dysphoria or dysphoria from information. And so it\u2019s not a one size fits all, when it comes to addressing those things. <\/span> <\/span><\/p>\n

There are actual, you know, physical barriers, so the use of testosterone actually makes the procedure more difficult. So, say using a speculum, for example. And there are lots of things that healthcare professionals can do to address that. And specialist clinics offer trans men and non-binary people specific screening services where they can do things like leave extra time, and they\u2019re trained and doing that procedure. But a really exciting new development. And something we found people were really keen for is self-sampling. So that\u2019s hopefully something that will come along in the future.<\/span> <\/span><\/p>\n

Jacob<\/span><\/b> <\/span><\/p>\n

With things like information materials that are so crucial when it comes to understanding screening, is there a willingness to make changes to make them more inclusive?<\/span> <\/span><\/p>\n

Alison<\/span><\/b> <\/span><\/p>\n

What I\u2019m really pleased to say is that the cancer charities have been really on board with changing the information. And I think it\u2019s really important that we have a selection of information available that is both gender neutral, and that is also tailored to the individual population, whilst bearing in mind that there are some people who may not have the health literacy to understand unless we use some particular kind of easy read words like women, so it\u2019s about having that balance. <\/span> <\/span><\/p>\n

But that\u2019s been done really nicely by Jo\u2019s Cervical Cancer Trust, who sponsored the study that I did in trans men and non-binary people and by Cancer Research UK as well who have a specific screening page for trans and non-binary people.<\/span> <\/span><\/p>\n

Jacob<\/span><\/b> <\/span><\/p>\n

Yeah, it seems like a tailored approach could really help here. As you say, it\u2019s not a one size fits all and it sounds like tailoring screening in particular to an individual\u2019s needs could help everyone that\u2019s eligible, not just specific groups that face greater inequalities. Would you agree with that?<\/span> <\/span><\/p>\n

Alison<\/span><\/b> <\/span><\/p>\n

Absolutely. So we have a fantastic National Health Service that is free at the point of need and offer services to a wide range of the population and that\u2019s brilliant, but whilst we need to provide a certain level of service to everyone, there will be some people who have particular additional needs So, say for example, you wouldn\u2019t expect someone whose English is not their first language, and they don\u2019t have sufficient English skills to understand a consultation to make do in our health service without an interpreter, for example. <\/span> <\/span><\/p>\n

So, that\u2019s just one example of how making a small change makes everything more equitable. So when I\u2019m thinking about screening services, specifically, if you have the ability to properly opt in and out of cervical screening, if you\u2019ve say, for example, had a really traumatic hysterectomy, because of a complicated pregnancy, you can opt out of receiving those informations, which might be just as traumatic to you as say, for example, receiving an information if you\u2019re a trans person, and you\u2019ve been outed by the letter falling on your carpet, for example. <\/span> <\/span><\/p>\n

And so, in that way, not only do we make the experience better for the person, but actually the data we collect, for who responds to their invitation is also going to be more accurate. And in the same way, trans women, they don\u2019t need cervical screening because they don\u2019t have a cervix. And so they could properly opt out of the system as well. When we start to consider what extra information or needs a given population has and we start to dig into cultural beliefs around screening a little bit more, we start to uncover lots of intersectional things about people\u2019s health beliefs. And the deeper you go, the more you realise you can tailor screening better.<\/span> <\/span><\/p>\n

Jacob<\/span><\/b> <\/span><\/p>\n

That\u2019s so interesting. I know that in another area of your research, you looked into the knowledge and attitudes of healthcare professionals to treating LGBTQ+ patients. Can you tell me a bit about what you found there?<\/span> <\/span><\/p>\n

Alison<\/span><\/b> <\/span><\/p>\n

So, in that piece of work, we looked at medical oncologists and clinical oncologists across the UK, around 250 of them, and we found that people were very accepting of people being LGBTQ, which goes with the prevailing culture, and they felt that they wanted to give equitable treatment. But they were very upfront and saying that they just didn\u2019t have the specific knowledge. <\/span> <\/span><\/p>\n

They also knew that it was important to ask, particularly of someone\u2019s trans status, because it might be relevant, but they weren\u2019t always asking. And this I think, is related to perhaps not knowing exactly why it is important to ask just feeling like it\u2019s just a sort of nice thing to know. <\/span> <\/span><\/p>\n

And that there was a real call for kind of specific education. And I find that across the board, and obviously, I go in and educate clinicians all the time. And when you give patient cases, and you say, actually, this is why you need to give a little bit more of an example here, and it will make a real difference to your patient people go \u2018oh now I see\u2019 that\u2019s what I mean by this equality versus equity.<\/span> <\/span><\/p>\n

And there\u2019s been some really nice work on this done by some Australian researchers, which, which shows that the majority of clinicians are saying, \u2018well, it\u2019s okay because I treat everybody the same.\u2019 But actually, it goes back to that example, I said about language, if you treat everybody the same, that\u2019s not necessarily equitable care. So, people, for example, who are trans and their gender affirming treatment might intersect in some way with their cancer care may need some additional support in that. So actually, if someone\u2019s had radiotherapy for prostate cancer, that will have implications to their genital surgery. If someone is taking hormones, for a breast cancer, that hormone receptor positive, there will need to be a conversation about the risk versus benefit of continuing that. And there is some, there is some nuance to that. <\/span> <\/span><\/p>\n

But it\u2019s also relevant when it comes to sexual orientation. And this is just one example. Not every example when it comes to sexual orientation is around sex. But one of those is say, for example, if you are having anal sex, and the the LGBTQ population are not the only population that do that, but it\u2019s more relevant there, you need a stronger erection. So there\u2019s a different conversation to be had about, say, whether your nerves will be damaged if you\u2019re having prostate cancer treatment. If you are having receptive anal sex, actually, there may be implications on the pleasure you get from that. And that\u2019s a conversation that needs to be had. <\/span> <\/span><\/p>\n

Moving forward thinking about risk factors for cancers and say, for example, what GPs can do, there\u2019s data to suggest that you are more likely to have certain other risk factors for cancer, if you are LGBTQ. So, some lovely work by my colleague, Sarah Jackson in the States, your risk factors for cancer from being part of the LGBTQ population are nothing to do with kind of hormones or sexual behaviour, per se. But they may be to do with obesity, smoking, alcohol, so there\u2019s an opportunity for intervention there. <\/span> <\/span><\/p>\n

And let\u2019s also not underestimate the benefit of saying \u2018Who have you brought with you today?\u2019 and not assuming it\u2019s their sister, when actually it might be their partner, because you\u2019ve immediately broken trust and that person may not then tell you something else that\u2019s wrong with them.<\/span> <\/span><\/p>\n

Jacob<\/span><\/b> <\/span><\/p>\n

Yeah, I think that\u2019s important to highlight. These don\u2019t always have to be big changes in how the healthcare system works. It can be small things like asking inclusive questions too. <\/span> <\/span><\/p>\n

From looking into the research in this area, it can actually be a bit tricky to find data on cancer in the LGBTQ+ population. Do you think that the lack of data collection is impacting our ability to reduce the inequalities we\u2019re seeing here?<\/span> <\/span><\/p>\n

Alison<\/span><\/b> <\/span><\/p>\n

Absolutely. The saying goes \u2018if you don\u2019t count us, we don\u2019t count\u2019 and so there\u2019s been a big push for an increase in sexual orientation and gender identity monitoring in healthcare data. We don\u2019t collect it routinely in the national cancer registry. And I think that\u2019s something that needs to change because we don\u2019t know if people\u2019s outcomes are inferior because of sexual orientation or gender identity or trans status, because we simply don\u2019t ask it. <\/span> <\/span><\/p>\n

And that\u2019s the case in many places globally, and there is a big push globally to have it. So at the moment, we don\u2019t know what the variations in that might be, depending on where you are in the country. So actually, if you\u2019re LGBTQ, and in London, you know, where there\u2019s a big population is that better than say, being treated in a different part of the country, we don\u2019t know if there are specific inequalities with cancer incidence and outcomes for trans people outside of say, the very kind of commonly thought about sex-related cancers. So there\u2019s been some nice work in the Netherlands that\u2019s looked at prostate cancer, breast cancer, testicular cancer matched with their pathology database. But actually, otherwise, we don\u2019t know what other kind of smaller impacts say hormones may or may not be having. I suspect in most cases, they\u2019re not. But more importantly, the kinds of other inequalities and impacts that we might see. And certainly, again, we don\u2019t pick up those issues with outcome. <\/span> <\/span><\/p>\n

Without that data, we are unable to see that there is a problem. And that means that there\u2019s then a lack of interest and lack of funding in putting more resources into solving it. And so really, I think, in terms of changing the face of LGBTQ cancer care, that data collection really needs to be the first step.<\/span> <\/span><\/p>\n

Jacob<\/span><\/b> <\/span><\/p>\n

And would that be something that we can implement without much trouble? Or would it be a bit more complicated than just adding it to routine data collection?<\/span> <\/span><\/p>\n

Alison<\/span><\/b> <\/span><\/p>\n

I think to collect sexual orientation and gender identity requires a certain level of training in that you have to be able to ask the question properly, explain why you\u2019re asking it, know what to do with the yes and what to do with a no, but actually, once you\u2019ve had that, and that training needs to be for anyone that\u2019s asking it, so it might be the admin staff at the front door, when you\u2019re coming to check in for your appointment, it might be the clinician themselves, but once you\u2019ve done that, then it is relatively straightforward. <\/span> <\/span><\/p>\n

And you say you might use it as a routine intake form, \u2018we ask everybody this question\u2019, and that\u2019s a really useful tool because it takes out the burden. I think people will ask it more when they know why it\u2019s important. <\/span> <\/span><\/p>\n

There\u2019s a big move to record in primary care this information through the private practice programme, and the primary care systems are getting better. And some of the new secondary care systems can record it, but it just requires a base level of say knowledge and training of the importance having those conversations making it routine and educating the community about how it will really benefit that healthcare.<\/span> <\/span><\/p>\n

Jacob<\/span><\/b> <\/span><\/p>\n

So if they\u2019re not collecting that data, it sounds like some healthcare professionals might not be treating patients equitably because they just don\u2019t know that they\u2019re treating someone who\u2019s part of the LGBTQ+ community. Is there an awareness of the need for education in this space? And is that something healthcare professionals think they\u2019d benefit from?<\/span> <\/span><\/p>\n

Alison<\/span><\/b> <\/span><\/p>\n

What we found in the study of knowledge, attitudes and behaviours of healthcare professionals and oncology was an appetite for increased undergraduate and postgraduate education. It\u2019s lacking in both spaces. But I would argue that it needs to be put into the medical school curriculum almost under duress, if it\u2019s otherwise not going to be because a base level of knowledge is required by every healthcare professional within or outside cancer. <\/span> <\/span><\/p>\n

And then if there\u2019s a particular relevance for your specialty, then it needs to be woven into your postgraduate education too. There are examples of where that is increasingly coming through and there are organisations at the student level really pushing for this, but it needs to be not an optional add on, it needs to be essential.<\/span> <\/span><\/p>\n

Jacob<\/span><\/b> <\/span><\/p>\n

And thinking about your work, does that lack of data also affect your ability to start up research projects in this field?<\/span> <\/span><\/p>\n

Alison<\/span><\/b> <\/span><\/p>\n

Absolutely. So, all of my LGBTQ cancer research to date has been entirely unfunded, and in my own time, in addition to whatever I was, quote, unquote, supposed to be doing with my main research time.<\/span> <\/span><\/p>\n

I\u2019m pleased to say that a future study we will be looking at in self-sampling for HPV related cancers will be funded through a collaboration that I made. And whilst my time has been funded by bigger grants, I\u2019ve had to pick \u2018safe\u2019 projects to keep me funded to do my passion projects in addition. And I\u2019m not alone in that everyone that I\u2019ve worked with has been the same position. There is more and more funding for inequalities. It is out there. But yes, because these are small populations, and it\u2019s hard to get the pilot data because of the data collection reasons I mentioned, attracting funding is much harder.<\/span> <\/span><\/p>\n

Jacob<\/span><\/b><\/p>\n

Alison\u2019s research is giving us crucial insight into the barriers that LGBTQ+ patients face throughout their cancer journey. <\/span> <\/span><\/p>\n

She\u2019s also helping to make equitable changes to healthcare, like helping to establish the UK cancer and transition service, or UCATs, a service that clinicians or a patient can be referred to if there\u2019s an intersection between their cancer care and their gender affirming care. UCATs brings the clinicians and the patient together to talk about the impact of the different treatments on one another come to a consensus and decide a way forward. <\/span> <\/span><\/p>\n

But in our chat, she also explained that inequalities aren\u2019t limited to the clinic, and that those in the research community that have lived experience of being trans or non-binary can also find themselves facing a unique set of challenges. <\/span> <\/span><\/p>\n

Alison<\/span><\/b> <\/span><\/p>\n

There\u2019s lots of fantastic research being done in LGBTQ healthcare overall and increasingly in LGBTQ cancer care. But the problem that you find is that sometimes researchers can be working in silo because it\u2019s a less common area and then when people do group together, because it\u2019s a small community, particularly those with lived experience, and particularly lived experience of being trans or non-binary, can find themselves involved in a lot of projects and risk getting burnt out and exhausted, or also under recognised for their commitment and contribution and that can be a barrier to them progressing as researchers. <\/span> <\/span><\/p>\n

So, I call it \u2018middle author syndrome\u2019, because this has happened to a number of friends of mine, where they have contributed to lots of amazing projects, because people want to involve people with lived experience and co-production is really important. But because of that people with lived experience, contribute to lots of projects in a small way and so they are neither a first author, which for those not involved in research, you know, means you get lots of accolades, if you have a first author publication, wonderful on your CV, or the last author, which means you\u2019re the boss and you conduct in the orchestra on this amazing piece of work. <\/span> <\/span><\/p>\n

But they\u2019re neither they\u2019re in the middle, which are the people who may have contributed a bit to the writing or a bit to the action that happened or but the contribution is a bit more blurred the level of what someone\u2019s done is less known. And the problem is because the accolades come for first and last author, you put that on, say your report to the person that\u2019s employing you, which might be university when you apply for grants on your CV. And actually, that then looks less impressive. And those people whilst having lots of recognition in the community don\u2019t get the firm output to progress their career and secure funding. And that\u2019s a real barrier. So true co-production needs to ensure that we are putting the correct first author first that people with lived experience are able to come up with research and to drive it and are supported to do that and getting more people doing the work will enable that to happen because you need proper mentorship for that too. And there\u2019s some been some lovely work written by trans or non-binary researchers kind of on this topic and what needs to change in healthcare research.<\/span> <\/span><\/p>\n

Jacob<\/span><\/b> <\/span><\/p>\n

I think yeah, involving those people with lived experience is so important. Do you find that you\u2019re able to do better research by working in that way?<\/span> <\/span><\/p>\n

Alison<\/span><\/b> <\/span><\/p>\n

A really important part of being able to be a good researcher in this space and indeed, a good clinician is the very active partnership that I have with the cancer charity Live Through This with whom I\u2019ve been a trustee since 2020. <\/span> <\/span><\/p>\n

As I\u2019ve mentioned, co-production is absolutely key when it comes to research that having a close connection to lived experience, the community and partnering in that way allows the research really to be driven by what the patient need is, and then also the clinical services in the same way and we have a fantastic symbiotic relationship between myself and the CEO of Live Through This and anyone who is looking to work in this area or indeed other areas, I would really encourage you to have close connections. Patient public involvement is often seen as an add-on to research but then it makes what you\u2019re doing that much more relevant. We are very biassed, as healthcare professionals and researchers by having been medicalized. You will learn so much by speaking with people who are not coming from that primary objective.<\/span> <\/span><\/p>\n

Jacob<\/span><\/b><\/p>\n

More research like Alison\u2019s is exactly what we need to highlight inequalities both in and out of the clinic. As she rightly said, you can\u2019t tackle a problem you can\u2019t see. But what about other ways we can reduce inequalities and what resources are out there for LGBTQ+ people affected by cancer?<\/span> <\/span><\/p>\n

Alison just mentioned Live Through This a patient led cancer charity that supports and advocates for LGBTQ+ cancer patients in the UK. To get a better picture of what led to this are doing to make cancer care more inclusive. I sat down with the charities founder and CEO to ask them about their work.<\/span> <\/span><\/p>\n

Stewart<\/span><\/b> <\/span><\/p>\n

My name is Stewart O\u2019Callaghan. I use they\/them pronouns. And I\u2019m the founder and chief executive the charity just mentioned, and it came because I have chronic myeloid leukaemia, and that was diagnosed quite young. I was 29 I think at the time. <\/span> <\/span><\/p>\n

And as part of that process, I really wanted to connect with the people who had similar experiences were from my community that I could kind of share with and relate to and just didn\u2019t really find anything in the years before setting up the charity that I could access. And in addition to that, I sort of noticed there would be times that I would have questions or considerations about me and my community that couldn\u2019t be answered. So, with some support early on with some really fantastic clinicians who believed in what I was saying, we were able to build a peer support so I could finally meet other people and then also really start to educate those healthcare professionals on how to improve patient care so they don\u2019t face as many barriers as I potentially did.<\/span> <\/span><\/p>\n

Jacob<\/span><\/b> <\/span><\/p>\n

As you\u2019ve just said, something like Live Through This didn\u2019t exist before you set it up. How did you navigate establishing the charity and deciding what form it needed to take?<\/span> <\/span><\/p>\n

Stewart<\/span><\/b> <\/span><\/p>\n

So, I think I have to give credit where it\u2019s due that there was some bits of work that did exist prior, but nothing like what we\u2019ve set up, if that makes sense. So, there were a couple of goods peer support groups for gay men with prostate cancer. And what was missing was cancer organisation that was sort of pan-cancer pangender, just in way that other cancer organisations are, they\u2019re sort of there for everybody affected in that way. <\/span> <\/span><\/p>\n

I figured why can\u2019t that exist, especially for someone like myself, who sees themselves in sort of non-binary space, as well as having a rare cancer all these things, there was sort of many avenues of support I wasn\u2019t able to take because I was in this quite sort of outlier position. But the idea of making it a formal charity sort of came out actually, of people around me at the time saying, you know, have you thought about putting in this place and I prior to this hadn\u2019t really done much charity work been involved. I\u2019ve been involved in activism for the queer community and spaces. So sort of, I see almost as an extension of that, and then sort of learning the charity ropes as I go.<\/span> <\/span><\/p>\n

Jacob<\/span><\/b> <\/span><\/p>\n

Yeah, I think it\u2019s really important for people to see themselves represented in the groups available to support them. So, for our listeners who aren\u2019t familiar with Live Through This, can you explain what you do?<\/span> <\/span><\/p>\n

Stewart<\/span><\/b> <\/span><\/p>\n

Yeah, absolutely. So, the organisation kind of works in four main pillars at the moment, I would say.<\/span> <\/span><\/p>\n

So, the first one is obviously patients. And that\u2019s the thing that really keeps our feet on the ground. So, we provide peer support, we provide support for their partners as well. And we\u2019ll be expanding what we offer over the next coming year, we just got a new funded role coming in to do that. And that\u2019s been really important, because ultimately, we\u2019re doing everything we can to improve the patient experience and outcomes. So we have to listen to them directly about how is it? What are the barriers? Where are you finding these issues, and then the information we gather from that is really formative in how we then approach to professionals, which is the second pillar. <\/span> <\/span><\/p>\n

So, we also have to work with professionals, you know, there\u2019s no point is coming in and sort of talking down to them about what they don\u2019t know. Instead, it\u2019s working with them and saying, \u2018this is how you can expand your knowledge, we understand you\u2019re working with systems that don\u2019t always work in the most inclusive ways\u2019. And between those two groups, there\u2019s a lot of resource production for information that didn\u2019t previously exist, or just pulling things together or sort of statements or campaigns. <\/span> <\/span><\/p>\n

So recent campaigns are the Best For My Chest.com. So that\u2019s inclusive breast cancer screening that was done with the <\/span>Northeast London Cancer Alliance. We\u2019ve just released, Remove the Doubt, which is inclusive <\/span>cervical screening, and that was with West Yorkshire Cancer Alliance. So it\u2019s these things of where we have heard patients directly say, \u2018I don\u2019t get this information it doesn\u2019t speak to me\u2019 and saying, \u2018Well, what can we do in our network to make something that does speak to you.\u2019 <\/span> <\/span><\/p>\n

And those last two pillars are partnership and policy. So we speak to a lot of organisations about their policies and how to make the<\/span>m more inclusive. And we get contacted by, for example, Royal colleges and so on about how they might do that. But I think it is a real root issue of the you know, we can change nurses opinions and the way that they speak to patients directly, but we also have to address policy so we can make things more inclusive.<\/span> <\/span><\/p>\n

Jacob<\/span><\/b> <\/span><\/p>\n

It sounds like you\u2019ve got a lot on your plate. But as you said, you do a lot of your work alongside other groups and charities. How important would you say being collaborative is to what you do?<\/span> <\/span><\/p>\n

Stewart<\/span><\/b> <\/span><\/p>\n

It\u2019s so important. I mean, if you enter into a space that\u2019s already incredibly active, and people doing lots of great work and thinking, actually, rather than work with these people who have a track history of know what they\u2019re talking about, and have a, you know, active user base on this kind of stuff to then come in and think, \u2018Okay, well, we\u2019re going to replicate that so we can own it. So we so it\u2019s ours, and we\u2019re going to take it over here\u2019, it doesn\u2019t really speak to that view of an inclusive future and working together to improve things overall. <\/span> <\/span><\/p>\n

And likewise, in the way that we have specialist knowledge in cancer and its effects or risk and modulation in our community. We don\u2019t expect those organisations that we sometimes work with to have that knowledge. And so it\u2019s that sort of give and take between what this is what we have, and also as a small team with limited capacity as well it makes sense to sort of work with other people and share resource, rather than again, thinking well, we have to build up on our own bigger because I think that will ultimately come back to bite you slightly because also in every bit of co working and signposting and building those relationships, you build a positive view of being able to check in not now but also in the future.<\/span> <\/span><\/p>\n

Jacob <\/span><\/b> <\/span><\/p>\n

That idea of being able to share knowledge and step back when you can learn from others sounds really key here, lived through this as a patient led organisation and who has more specialist knowledge of their needs than patients. As someone living with cancer yourself, how has that influenced the way that you work with Live Through This? <\/span> <\/span><\/p>\n

Stewart<\/span><\/b> <\/span><\/p>\n

That\u2019s an interesting question. Because in some sense of naivety, it\u2019s all I know, because I am a patient, you know, and, and I think when I was setting things up, I didn\u2019t realise the power or impact that it would have for me being a patient until you get into this space and then you realise that does really add weight to what you\u2019re saying. And I\u2019m grateful for that. So there are positives and sometimes limitations from it. I wouldn\u2019t say negatives but some limitations. <\/span> <\/span><\/p>\n

So, the positives is that people will take you sometimes more seriously because they know I lived it and I am living there so I have an incurable form of blood cancer. So you know, I\u2019m regularly seeing my consultant you know, I\u2019ve just been put on a brand-new medication so I\u2019m dealing with the side effects and trying to come to terms with that new normal all whilst trying to keep an organisation going. So, there\u2019s times when it\u2019s a powerful tool to have people take me seriously as someone who is in the system of trying to change the system from that perspective. But there are times when is fatigue inducing, and I\u2019ve got to fit it around my own clinical health and in all these kinds of things.<\/span> <\/span><\/p>\n

Jacob<\/span><\/b> <\/span><\/p>\n

Whilst isn\u2019t always easy, do you think the charity\u2019s presence has helped facilitate the introduction of more inclusive cancer care so far? <\/span> <\/span><\/p>\n

Stewart<\/span><\/b> <\/span><\/p>\n

Yeah, I definitely think so. We\u2019ve not been around that long but I think the conversation, and I like to think in part because of some of the work we\u2019re doing has progressed quite quickly, in that sense. And again, I think it\u2019s because we\u2019ve come a really good time when people are very conscious of EDI and how to deliver on it. And they\u2019re looking to experts in the area to give them tips on how to do so. <\/span> <\/span><\/p>\n

So, yeah, I do think it\u2019s starting to get better in pockets. You know, it\u2019s not that there is a wholesale movement towards inclusion, I think I see a lot of positive impact from people on the ground, people who care and directly dealing with patients, I would love to see more impact from more senior decisions and more national decisions. You know, there\u2019s lots of things in that. But things have been moving forwards. And the thing that\u2019s really encouraging as well is to see other small projects picking up throughout the country due to this becoming more of a kind of known topic, which is fantastic.<\/span> <\/span><\/p>\n

Jacob<\/span><\/b> <\/span><\/p>\n

That\u2019s great to hear. But speaking of more national decisions, when I chatted to Alison, she explained that a lack of data collection is a big barrier to improving care in the LGBTQ+ community at the moment. Would you agree with that?<\/span> <\/span><\/p>\n

Stewart<\/span><\/b> <\/span><\/p>\n

Data is one of them. I\u2019m not gonna lie, Alison is right. <\/span> <\/span><\/p>\n

I think another thing to really think about as well is the delivery of equitable care, and how it really does align with not only the Equality Act, but also the health and social care duties and things like that. And understanding that LGBTIQ considerations are not elective considerations, there are a core principle of person-centred care or personalised care. <\/span> <\/span><\/p>\n

But there is an assumption then that we still expect the individual to volunteer that information if they think it\u2019s relevant. Whereas actually, we need to move to the point where we think it\u2019s relevant, we understand it\u2019s relevant, and it\u2019s always up to that person to choose if they want to disclose but understanding why it\u2019s relevant. And how that can allow us to provide better care, then is a fantastic motivator. And this is what we do a lot with our education is not just awareness building, because people know we exist at this point, it\u2019s going beyond awareness to knowledge, why is this important? How is this impactful? And then hopefully building some confidence to know okay, well, this is why this is important.<\/span> <\/span><\/p>\n

Jacob<\/span><\/b> <\/span><\/p>\n

And do you see that growing awareness and knowledge in the people you work with?<\/span> <\/span><\/p>\n

Stewart<\/span><\/b> <\/span><\/p>\n

Yeah, definitely, I think it\u2019s a point where, like I said before, everyone knows that they should be inclusive, right? You know, and we all know the core principles of that. And that\u2019s why in some cases, it\u2019s enshrined in law, when you do look at the Equality Act protected characteristics, and all of these things. And I think that drives a lot of people to want to work with LGBT organisations or work with other minoritized communities. <\/span> <\/span><\/p>\n

There sometimes can be a hesitation of taking that beyond a listing report, or beyond a review, or survey. And I think it\u2019s that point where if you get to the point where you\u2019ve brought in either an outside opinion, or you\u2019ve done a bit of research, all of that should be in service of doing something with it, really, other than just doing a sort of state of play, like well, now you have this, what\u2019s the next step? <\/span> <\/span><\/p>\n

And we definitely have worked with people before who get cold feet at the last hurdle. And I think that\u2019s something that sometimes happens when people wade into the issue naively, when, and that\u2019s fine. But as they get into it, they realise the complexity of it, and they realise how much they need to commit to it. Sometimes that can be resource, sometimes that can be the time and attention, or it might even just be commitment to the public working in this space. <\/span> <\/span><\/p>\n

And I think that\u2019s where that true sense of allyship comes, you know, are you willing to put your name on the line to stand with us? Or is it something that you just sort of want to do and put on the back end of your website somewhere? So you can say, well, we have a page. <\/span> <\/span><\/p>\n

So, I think this is a point by which now more than ever, we need that active allyship and that public allyship to make sure that the rights and protections that our community enjoys are not rolled back. It\u2019s a really, really important factor. And I think in the short time that yes, I\u2019ve seen the conversation on LGBTI health grow in a positive sense. I have also seen at the same time, that recent politicisation of our identity, and how this is really threatening that, that equality. <\/span> <\/span><\/p>\n

And we obviously see that in some parts globally, but we definitely do see here as well. And I see it not only from a policy point of view, and in that sense, but I also see in the individuals I support. So, all the way from the top all the way down to where that patient sits in the system. I see that fear, I see that hesitation and I see that frustration.<\/span> <\/span><\/p>\n

Jacob<\/span><\/b> <\/span><\/p>\n

I\u2019m glad that things are starting to change. But as you say, there\u2019s still a long way to go. As you said a bit earlier, you haven\u2019t been around for that long, but have your goals for the charity changed as you\u2019ve grown?<\/span> <\/span><\/p>\n

Stewart<\/span><\/b> <\/span><\/p>\n

That\u2019s a good question. I think in the beginning, I was just lonely, you know, I was so painfully lonely, in my experience, and I had, over the years, multiple promises of you\u2019ll get you to match with someone, you\u2019re, you\u2019ll get that kind of conversation and support you\u2019re looking for. And it just never happened until I took into my own hands. <\/span> <\/span><\/p>\n

So, now I do get to meet people. I mean, I have to be professional, you know, they are my service users, I can\u2019t be their friends in that capacity. And you know, they have to be very professional about that. But I do meet people to help them meet each other. And that\u2019s really fantastic. And then very quickly, you know, it moved towards the education we provide. And that\u2019s become like a really key avenue for our work in just making sure that people again, understand the why it\u2019s, it\u2019s important to think about LGBT identity. So when I think about that, I think about the impact of improving patient care, again, as a charity as a sort of registered body, the weight that we can throw into those policy discussions like [Alison] was saying that, that data, how, you know, can we really put some weight behind that. <\/span> <\/span><\/p>\n

And, you know, again, there\u2019s that partnership working. So for example, we very recently in partnership with Jo\u2019s Trust, and Breast Cancer Now submitted a question to government about the digital transformation of screening. So you know, it\u2019s that ability to get into those conversations and make sure that inclusion is in the innovations that we create, there\u2019s no point or dating systems if it still cuts out a large portion of our population. So when I think about the long term, obviously, like all charities, the the reality is, it\u2019d be great if we weren\u2019t needed in the same capacity that we needed now. But I do think there will always be a space by which people will want specialised care, that\u2019s led by and for that\u2019s, you know, got their interests absolutely as a core value rather than a project on the side, that happens occasionally. <\/span> <\/span><\/p>\n

So, for me, I think the growth of the charity to remain a body that people can trust and come to for information and support is great. But I would love to see, obviously, policy become more inclusive, I would love to see data be collected, I would love to have this effectively on an equitable playing field to other patients, so that we don\u2019t face additional barriers, and, and really thinking back all the way to screening, if we can\u2019t even get screening, right and get people diagnosed in a timely manner. You know, we\u2019re off on a bad foot.<\/span> <\/span><\/p>\n

Jacob<\/span><\/b> <\/span><\/p>\n

Definitely, as you say, we\u2019ve got to start right at the beginning of the cancer pathway and work through. But talking about being able to facilitate people meeting each other, I imagine that the pandemic had a big impact on your work, as it did on the entire cancer care landscape. How did you adapt to that?<\/span> <\/span><\/p>\n

Stewart<\/span><\/b> <\/span><\/p>\n

Yeah, absolutely. So um, so given that we\u2019re quite new as well, I mean, I probably picked the worst time to start a charity because we started and then very quickly, it was like they live a pandemic and trying to grow something. But you know, it\u2019s that lemons to lemonade thing really, because in some ways, it was that steep learning curve, maybe even steeper. But what it also allowed us to do is take something that at that point was a local peer support group into a national service that was available online, you know, so we had to learn how to operate online safely, very quickly. And we had to figure out how all of that worked. But it\u2019s actually become a really powerful asset. <\/span> <\/span><\/p>\n

So being able to reach patients who basically just need to access a computer, and they can speak to us being able to educate healthcare professionals all over the country, even across Europe, we\u2019re involved in projects in that way, as well. So it\u2019s really important, I think, to as much as you know, in regards to digital exclusion, but when we think about geographically, just almost democratise the approach slightly across the country, because LGBT initiatives and health can sometimes be a bit of a postcode lottery, about who\u2019s trained and what services exist, where, and that\u2019s why, you know, there are some amazing trans-specific sexual health clinics that provide screening. And I know people, for example, who travel from Wales to London, just to have cervical screening for what the future should be, obviously, is that service being equitable across the country, so people aren\u2019t having to travel such great distances. <\/span> <\/span><\/p>\n

So, it\u2019s been a really interesting thing to have to modernise in that way. But also, there\u2019s been certain benefits to that as well, in that, although networking in the physical sense, took a step back, which sometimes is difficult when you\u2019re trying to grow an organisation and its influence, you know, that there was that ability, then it was much easier to have meetings with people who potentially are quite senior, because you could just grab 20 minutes of them sat at their computer. So, it was a lot of figuring out how to modernise, how to do it safely. But it did allow us to reach more people and continues to do so we do want to do a little bit more in person service again in the future. So we are building those things back in but I think we would never go back to just solely in person. We\u2019ve reached too many people online that that I\u2019m just not ready to leave behind.<\/span> <\/span><\/p>\n

Jacob<\/span><\/b> <\/span><\/p>\n

Before we wrap up with a last note from Stewart, this has been That Cancer Conversation. I want to say thank you to both of our guests, Dr Alison Berner, and Stewart O\u2019Callaghan. <\/span> <\/span><\/p>\n

For more information and resources on today\u2019s topic, take a look at our show notes. And if you have time, please rate the show and leave a review. Remember, if there are cancer conversations you want us to have or topics you want us to explore let us know at science [email protected]<\/a> <\/span> <\/span><\/p>\n

And if you\u2019re enjoying the episodes, please do subscribe to the series wherever you get your podcasts. Just so you know, we\u2019ll be taking a break in July to prepare for the rest of the series, so will be back with our next episode in August.<\/span> <\/span><\/p>\n

That Cancer Conversation is produced by the digital news team here at Cancer Research UK. Thanks for listening and talk to you next time.<\/span> <\/span><\/p>\n

Stewart<\/span><\/b> <\/span><\/p>\n

I think for me, one of the things that is important to sort of leave people with is obviously check out our resources and the things we create and share those I think that you know, is obviously very true and I hope people will also enjoy them, you know, and if they have ideas for more work they can do they can also suggest them or if they have the capacity, they can work with us to do it too. <\/span> <\/span><\/p>\n

But I think the other thing is a lot of people\u2019s hesitation about talking about LGBT health in general is this fear of getting things wrong. And I think a lot of that is based in the concept of saying the wrong thing. Or maybe that is too complicated, or it\u2019s not enough people, that kind of thing. But the reality is, is we all in that space talk about very complicated things all the time. We also talk about very rare diseases that only affect a point something percent of people and we still give them enough credence. <\/span> <\/span><\/p>\n

So I think there is that aspect of if the kind of issue is a lack of confidence and familiarity with the community and our language is engage with the content. You know, there are so many different things out there. There are fantastic podcasts, there are TV shows, there\u2019s books, there\u2019s a whole plethora of things. So, if what\u2019s holding you back is understanding our community\u2019s language and context. Just engage with it and listen, and it will become much more fluent bigger because I think knowing LGBT language is one thing that we\u2019re using fluency is the other and I think that\u2019s what stops people. I think people get nervous. <\/span> <\/span><\/p>\n

So yeah, just not being afraid to engage in some of the fantastic content that our community puts out. Because it really can be an eye opener, not just specifically for that point of language and context, but also for people\u2019s experiences. And even me as a queer person. That\u2019s one of the things I often go to when there\u2019s a part of the community that I\u2019ve done feel like I\u2019ve completely fully taken the time to appreciate the unique experience and you can, you know, we\u2019re living in the age of content. There\u2019s so much out there.<\/span> <\/span><\/p>\n

Source<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Jacob (narrator) Hi, and welcome to That Cancer Conversation, the podcast from Cancer Research UK that brings together the science and the stories behind cancer, with me, Jacob Smith.   Beating cancer means beating it for everyone. And crucial to doing that is tackling health inequalities, unfair and avoidable differences in health across the population […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"footnotes":""},"categories":[5137],"tags":[],"class_list":["post-35642","post","type-post","status-publish","format-standard","hentry","category-world-news"],"_links":{"self":[{"href":"https:\/\/ogkologos.com\/en\/wp-json\/wp\/v2\/posts\/35642","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ogkologos.com\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/ogkologos.com\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/ogkologos.com\/en\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/ogkologos.com\/en\/wp-json\/wp\/v2\/comments?post=35642"}],"version-history":[{"count":1,"href":"https:\/\/ogkologos.com\/en\/wp-json\/wp\/v2\/posts\/35642\/revisions"}],"predecessor-version":[{"id":42912,"href":"https:\/\/ogkologos.com\/en\/wp-json\/wp\/v2\/posts\/35642\/revisions\/42912"}],"wp:attachment":[{"href":"https:\/\/ogkologos.com\/en\/wp-json\/wp\/v2\/media?parent=35642"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/ogkologos.com\/en\/wp-json\/wp\/v2\/categories?post=35642"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/ogkologos.com\/en\/wp-json\/wp\/v2\/tags?post=35642"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}