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 and between different groups within society. Health inequalities can exist between groups like ethnic, socio economic, or gender groups but today, we’re 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.
But before we do, it’s important to caveat that LGBTQ+ people are not a homogenous group. Each person’s 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’t touch on here.
Importantly, intersectionality where multiple aspects of a person’s 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.
We’ve 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] If there are any other topics you want us to explore.
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.
Alison
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’ve heard in the community.
Jacob
As you say, there’s a big range of inequalities that an LGBTQ+ person might face. So, let’s 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?
Alison
Some of the barriers were related to dysphoria, which is the felt sense that what’s 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’t identify with. But it can also come from so the information materials that are sent out to you, or the way that you’re invited might be incredibly triggering, and you may not want to engage because of that.
But what’s really important to note is that not everybody gets body dysphoria or dysphoria from information. And so it’s not a one size fits all, when it comes to addressing those things.
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’re 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’s hopefully something that will come along in the future.
Jacob
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?
Alison
What I’m really pleased to say is that the cancer charities have been really on board with changing the information. And I think it’s 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’s about having that balance.
But that’s been done really nicely by Jo’s 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.
Jacob
Yeah, it seems like a tailored approach could really help here. As you say, it’s not a one size fits all and it sounds like tailoring screening in particular to an individual’s needs could help everyone that’s eligible, not just specific groups that face greater inequalities. Would you agree with that?
Alison
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’s 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’t expect someone whose English is not their first language, and they don’t have sufficient English skills to understand a consultation to make do in our health service without an interpreter, for example.
So, that’s just one example of how making a small change makes everything more equitable. So when I’m thinking about screening services, specifically, if you have the ability to properly opt in and out of cervical screening, if you’ve 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’re a trans person, and you’ve been outed by the letter falling on your carpet, for example.
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’t need cervical screening because they don’t 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’s health beliefs. And the deeper you go, the more you realise you can tailor screening better.
Jacob
That’s 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?
Alison
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’t have the specific knowledge.
They also knew that it was important to ask, particularly of someone’s trans status, because it might be relevant, but they weren’t always asking. And this I think, is related to perhaps not knowing exactly why it is important to ask just feeling like it’s just a sort of nice thing to know.
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 ‘oh now I see’ that’s what I mean by this equality versus equity.
And there’s been some really nice work on this done by some Australian researchers, which, which shows that the majority of clinicians are saying, ‘well, it’s okay because I treat everybody the same.’ But actually, it goes back to that example, I said about language, if you treat everybody the same, that’s 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’s 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.
But it’s 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’s more relevant there, you need a stronger erection. So there’s a different conversation to be had about, say, whether your nerves will be damaged if you’re 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’s a conversation that needs to be had.
Moving forward thinking about risk factors for cancers and say, for example, what GPs can do, there’s 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’s an opportunity for intervention there.
And let’s also not underestimate the benefit of saying ‘Who have you brought with you today?’ and not assuming it’s their sister, when actually it might be their partner, because you’ve immediately broken trust and that person may not then tell you something else that’s wrong with them.
Jacob
Yeah, I think that’s important to highlight. These don’t always have to be big changes in how the healthcare system works. It can be small things like asking inclusive questions too.
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’re seeing here?
Alison
Absolutely. The saying goes ‘if you don’t count us, we don’t count’ and so there’s been a big push for an increase in sexual orientation and gender identity monitoring in healthcare data. We don’t collect it routinely in the national cancer registry. And I think that’s something that needs to change because we don’t know if people’s outcomes are inferior because of sexual orientation or gender identity or trans status, because we simply don’t ask it.
And that’s the case in many places globally, and there is a big push globally to have it. So at the moment, we don’t know what the variations in that might be, depending on where you are in the country. So actually, if you’re LGBTQ, and in London, you know, where there’s a big population is that better than say, being treated in a different part of the country, we don’t 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’s been some nice work in the Netherlands that’s looked at prostate cancer, breast cancer, testicular cancer matched with their pathology database. But actually, otherwise, we don’t know what other kind of smaller impacts say hormones may or may not be having. I suspect in most cases, they’re not. But more importantly, the kinds of other inequalities and impacts that we might see. And certainly, again, we don’t pick up those issues with outcome.
Without that data, we are unable to see that there is a problem. And that means that there’s 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.
Jacob
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?
Alison
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’re asking it, know what to do with the yes and what to do with a no, but actually, once you’ve had that, and that training needs to be for anyone that’s asking it, so it might be the admin staff at the front door, when you’re coming to check in for your appointment, it might be the clinician themselves, but once you’ve done that, then it is relatively straightforward.
And you say you might use it as a routine intake form, ‘we ask everybody this question’, and that’s a really useful tool because it takes out the burden. I think people will ask it more when they know why it’s important.
There’s 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.
Jacob
So if they’re not collecting that data, it sounds like some healthcare professionals might not be treating patients equitably because they just don’t know that they’re treating someone who’s 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’d benefit from?
Alison
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’s lacking in both spaces. But I would argue that it needs to be put into the medical school curriculum almost under duress, if it’s otherwise not going to be because a base level of knowledge is required by every healthcare professional within or outside cancer.
And then if there’s 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.
Jacob
And thinking about your work, does that lack of data also affect your ability to start up research projects in this field?
Alison
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.
I’m 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’ve had to pick ‘safe’ projects to keep me funded to do my passion projects in addition. And I’m not alone in that everyone that I’ve 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’s hard to get the pilot data because of the data collection reasons I mentioned, attracting funding is much harder.
Jacob
Alison’s research is giving us crucial insight into the barriers that LGBTQ+ patients face throughout their cancer journey.
She’s 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’s 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.
But in our chat, she also explained that inequalities aren’t 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.
Alison
There’s 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’s a less common area and then when people do group together, because it’s 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.
So, I call it ‘middle author syndrome’, 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’re the boss and you conduct in the orchestra on this amazing piece of work.
But they’re neither they’re 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’s 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’s 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’t get the firm output to progress their career and secure funding. And that’s 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’s 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.
Jacob
I think yeah, involving those people with lived experience is so important. Do you find that you’re able to do better research by working in that way?
Alison
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’ve been a trustee since 2020.
As I’ve 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’re 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.
Jacob
More research like Alison’s is exactly what we need to highlight inequalities both in and out of the clinic. As she rightly said, you can’t tackle a problem you can’t see. But what about other ways we can reduce inequalities and what resources are out there for LGBTQ+ people affected by cancer?
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.
Stewart
My name is Stewart O’Callaghan. I use they/them pronouns. And I’m 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.
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’t 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’t 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’t face as many barriers as I potentially did.
Jacob
As you’ve just said, something like Live Through This didn’t exist before you set it up. How did you navigate establishing the charity and deciding what form it needed to take?
Stewart
So, I think I have to give credit where it’s due that there was some bits of work that did exist prior, but nothing like what we’ve 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’re sort of there for everybody affected in that way.
I figured why can’t 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’t 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’t really done much charity work been involved. I’ve 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.
Jacob
Yeah, I think it’s really important for people to see themselves represented in the groups available to support them. So, for our listeners who aren’t familiar with Live Through This, can you explain what you do?
Stewart
Yeah, absolutely. So, the organisation kind of works in four main pillars at the moment, I would say.
So, the first one is obviously patients. And that’s 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’ll be expanding what we offer over the next coming year, we just got a new funded role coming in to do that. And that’s been really important, because ultimately, we’re 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.
So, we also have to work with professionals, you know, there’s no point is coming in and sort of talking down to them about what they don’t know. Instead, it’s working with them and saying, ‘this is how you can expand your knowledge, we understand you’re working with systems that don’t always work in the most inclusive ways’. And between those two groups, there’s a lot of resource production for information that didn’t previously exist, or just pulling things together or sort of statements or campaigns.
So recent campaigns are the Best For My Chest.com. So that’s inclusive breast cancer screening that was done with the Northeast London Cancer Alliance. We’ve just released, Remove the Doubt, which is inclusive cervical screening, and that was with West Yorkshire Cancer Alliance. So it’s these things of where we have heard patients directly say, ‘I don’t get this information it doesn’t speak to me’ and saying, ‘Well, what can we do in our network to make something that does speak to you.’
And those last two pillars are partnership and policy. So we speak to a lot of organisations about their policies and how to make them 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.
Jacob
It sounds like you’ve 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?
Stewart
It’s so important. I mean, if you enter into a space that’s 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’re talking about, and have a, you know, active user base on this kind of stuff to then come in and think, ‘Okay, well, we’re going to replicate that so we can own it. So we so it’s ours, and we’re going to take it over here’, it doesn’t really speak to that view of an inclusive future and working together to improve things overall.
And likewise, in the way that we have specialist knowledge in cancer and its effects or risk and modulation in our community. We don’t expect those organisations that we sometimes work with to have that knowledge. And so it’s 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.
Jacob
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?
Stewart
That’s an interesting question. Because in some sense of naivety, it’s all I know, because I am a patient, you know, and, and I think when I was setting things up, I didn’t 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’re saying. And I’m grateful for that. So there are positives and sometimes limitations from it. I wouldn’t say negatives but some limitations.
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’m regularly seeing my consultant you know, I’ve just been put on a brand-new medication so I’m 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’s times when it’s 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’ve got to fit it around my own clinical health and in all these kinds of things.
Jacob
Whilst isn’t always easy, do you think the charity’s presence has helped facilitate the introduction of more inclusive cancer care so far?
Stewart
Yeah, I definitely think so. We’ve not been around that long but I think the conversation, and I like to think in part because of some of the work we’re doing has progressed quite quickly, in that sense. And again, I think it’s because we’ve come a really good time when people are very conscious of EDI and how to deliver on it. And they’re looking to experts in the area to give them tips on how to do so.
So, yeah, I do think it’s starting to get better in pockets. You know, it’s 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’s lots of things in that. But things have been moving forwards. And the thing that’s 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.
Jacob
That’s 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?
Stewart
Data is one of them. I’m not gonna lie, Alison is right.
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.
But there is an assumption then that we still expect the individual to volunteer that information if they think it’s relevant. Whereas actually, we need to move to the point where we think it’s relevant, we understand it’s relevant, and it’s always up to that person to choose if they want to disclose but understanding why it’s 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’s 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.
Jacob
And do you see that growing awareness and knowledge in the people you work with?
Stewart
Yeah, definitely, I think it’s 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’s why in some cases, it’s 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.
There sometimes can be a hesitation of taking that beyond a listing report, or beyond a review, or survey. And I think it’s that point where if you get to the point where you’ve brought in either an outside opinion, or you’ve 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’s the next step?
And we definitely have worked with people before who get cold feet at the last hurdle. And I think that’s something that sometimes happens when people wade into the issue naively, when, and that’s 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.
And I think that’s 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.
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’s a really, really important factor. And I think in the short time that yes, I’ve 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.
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.
Jacob
I’m glad that things are starting to change. But as you say, there’s still a long way to go. As you said a bit earlier, you haven’t been around for that long, but have your goals for the charity changed as you’ve grown?
Stewart
That’s 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’ll get you to match with someone, you’re, you’ll get that kind of conversation and support you’re looking for. And it just never happened until I took into my own hands.
So, now I do get to meet people. I mean, I have to be professional, you know, they are my service users, I can’t 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’s really fantastic. And then very quickly, you know, it moved towards the education we provide. And that’s become like a really key avenue for our work in just making sure that people again, understand the why it’s, it’s 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.
And, you know, again, there’s that partnership working. So for example, we very recently in partnership with Jo’s Trust, and Breast Cancer Now submitted a question to government about the digital transformation of screening. So you know, it’s that ability to get into those conversations and make sure that inclusion is in the innovations that we create, there’s 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’d be great if we weren’t 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’s led by and for that’s, you know, got their interests absolutely as a core value rather than a project on the side, that happens occasionally.
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’t face additional barriers, and, and really thinking back all the way to screening, if we can’t even get screening, right and get people diagnosed in a timely manner. You know, we’re off on a bad foot.
Jacob
Definitely, as you say, we’ve 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?
Stewart
Yeah, absolutely. So um, so given that we’re 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’s 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’s actually become a really powerful asset.
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’re involved in projects in that way, as well. So it’s 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’s trained and what services exist, where, and that’s 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’t having to travel such great distances.
So, it’s been a really interesting thing to have to modernise in that way. But also, there’s 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’re 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’ve reached too many people online that that I’m just not ready to leave behind.
Jacob
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’Callaghan.
For more information and resources on today’s 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]
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Stewart
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.
But I think the other thing is a lot of people’s 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’s 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.
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’s books, there’s a whole plethora of things. So, if what’s holding you back is understanding our community’s 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’re using fluency is the other and I think that’s what stops people. I think people get nervous.
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’s experiences. And even me as a queer person. That’s one of the things I often go to when there’s a part of the community that I’ve done feel like I’ve completely fully taken the time to appreciate the unique experience and you can, you know, we’re living in the age of content. There’s so much out there.
