Jo McNamara Rad Chat Host (00:00)
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Naman Julka-Anderson (00:04)
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Jo McNamara Rad Chat Host (00:21)
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Naman Julka-Anderson (00:38)
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Jo McNamara (00:47)
So welcome everyone. This is episode one as part of our anal cancer series. So this series has been supported by an unrestricted grant from Incyte Biosciences. Incyte have had no involvement in the development, content or editorial review of the activities associated with this initiative. So today we're going to be hearing from our amazing guests, Alex Sparrowhawk and Emma Davey about HPV and HIV and their link to cancer and also...

the George House Charity. So welcome both of you. Thank you so much for joining us on Rad Chat.

Emma (01:19)
Thank you for having us.

Alex (01:21)
Thanks.

Jo McNamara (01:22)
So let's get some introductions. Emma, do you want to start by just telling us a little bit about yourself, what you do?

Emma (01:28)
Certainly, so yeah I'm Emma I'm a Macmillan palliative care nurse by background, I've been a palliative care nurse specialist for the last 25 years and then I've always worked in HIV care in a voluntary capacity and since I've been in my current role, so I work in the Tertiary Cancer Centre, just really noticed a disproportionate number of people living with a dual diagnosis of HIV and cancer, so I now work an additional role a day a week with our Cancer Alliance specifically focusing on

malignancies in people living with HIV.

Jo McNamara (02:00)
Thank you and Alex.

Alex (02:02)
Hi,

I'm Alex. Director of Delivery and Impact at George House Trust. We're an HIV organisation. It's been going for 40 years now. Living with myself with HIV was diagnosed in 2009, and I've spent a lot of the past few years working in sexual health in HIV as a result of my diagnosis and promoting good sexual health and looking to ⁓ prevent ill health. Thanks.

Naman Julka-Anderson (02:26)
Emma, why this patient cohort in particular? What kind of is drawing you to, especially staying within it for so long as well now?

Emma (02:32)
Yeah, I'm really, really passionate about this cohort of patients, you know, having worked across the field of oncology for a long time. As I mentioned, I felt that I was seeing a lot of people within my palliative care role with the dual diagnosis and not exclusively, but commonly the people with the dual diagnosis seem to be facing sort of additional challenges. I guess we know that very often our patient cohort can sometimes be underrepresented within healthcare.

There's number of barriers for people accessing timely healthcare very often if they are living with English as a second language or have other complex factors. So that's, think, really what drew me in, a real love of health inequalities and trying to improve things. And having worked in HIV care lifelong in a voluntary capacity, it kind of seemed to dovetail really nicely with my clinical role.

Jo McNamara (03:22)
So Alex, can you tell us a little bit about your kind of HIV diagnosis? How did you get diagnosed in the first place and was it expected? Was it something that you kind of had an idea that that's what it could be?

Alex (03:34)
Yeah, so back in 2009, I'd been on holiday, come back was really ill with like a flu-like illness and thought I probably had a sudden stroke from spending too much time on the beach the last couple of days trying to top up the tan. It didn't go away. I think in the back of my mind I was worried about HIV, had a test. That initial one came back negative. I now know that's because of the sort of like the window period

in between being exposed to HIV and having that initial test because you have to take time for your body to produce the antibodies to be detected. So spent the rest of that summer feeling actually like relatively okay but had this cough in the back of my throat for weeks and weeks and weeks and wasn't getting anywhere going back and forth to the GP. Got into the autumn time that year and decided actually let's you know...

get another test, get checked again. And that's when I found out. I think back then it was, you know, a shock.

to me and you sort of, you do sort of catastrophize and think the worst and you wonder what impact that's going to have on the future. was 24 at the time. So you kind of think you're invincible then and you've got your whole life ahead of you and all these, you know, the idea of your perfect life and your plans and it just felt like, was that all being like pulled out from under me? I was actually really lucky enough that living in Manchester at the time was referred into George House Trust all those years ago and actually got some really like, you

educational support, know, that peer support element, able to realise what HIV would mean for me and, you know, stayed in work, which back then was insurance, which wasn't very exciting and later on had opportunities to start volunteering and then getting more involved in sexual health advocacy and HIV prevention work. and then two years ago, joined George House Trust as a member of staff after what

at another organisation for a number of years. So a full circle journey for me.

Naman Julka-Anderson (05:23)
How did you find once you were diagnosed kind of talking about HIV with anyone around you?

Alex (05:28)
It was really weird. I told my closest friends within the first couple of weeks because I knew I had that trust with them and I felt comfortable enough to do that. I didn't tell my family for about two years. I was really worried about them and I was more worried about them worrying about me than worrying about their reaction.

I'm lucky enough that I've always had support from them and I knew they wouldn't judge me, which is lucky because not many people can have that confidence. The stigma is the thing that we see at George House Trust more than anything else. That fear and that learned stigma as well in terms of those fears for what might happen if something happened, if you were to share your status, for example.

It was, you know, I decided about three years after my diagnosis, and it was actually on the anniversary of my diagnosis to kind of come out publicly and started sharing my status and talking about my journey in the media and things like that.

Just to be able to, you know, help put a face to the virus. I think that's like the most powerful tool that we have. And, you know, we have our positive speakers program here at George House Trust. And we speak to colleagues in the NHS. We visit care homes. We go into schools and educate people whilst they're young. And I think, you know, those sorts of initiatives are really instrumental in fighting those myths and misconceptions that have, you know, stayed with the virus since the 80s and the 90s.

Peace.

Naman Julka-Anderson (06:50)
There's a lot of damaging stigma and...

I suppose wording around it as well. Like I'm just thinking back to when I was a boy in playground and you'd always shout, oh, you've got AIDS, this, that, like that's always been there in the rhetoric as a young person. I think even now as a professional, obviously learning about it, working with people who are living completely normal lives, I guess, if you can say that, with HIV compared to what you would have thought it would have been 20, 30 years ago. It's very, I don't know, eye-opening for me, I guess, sitting here and listening to you talk about

Alex (07:21)
Yeah, definitely. And I think, you know, we have come such a long way and it's 30 years this year that we're celebrating, you know, combined HIV therapy that was, you know, effective for the first time that literally overnight transformed lives and meant that we were seeing people being able to live with HIV rather than dying from AIDS. And yet the kind of the mindset is still, you know, stuck in the past in a lot of ways. you know, I think amongst the kind of like LGBT

community we've already made a lot of strides in terms of fighting that and I think in most recent years PrEP, the kind of anti-HIV prevention pill has really helped with that and really helped the community understand you know how treatment works. We have messages now like you equals you so undetectable equals untransmittable so people like myself you know taking my tablet once a day every day the virus is suppressed in my body I can't pass it on to anyone else.

It's about getting those facts out into the wider public and also amongst colleagues that work in healthcare we do still see and hear people who are afraid to access health support because they fear or they have had past experience of being the last person seen at the end of the day or being stuck on a waiting list forever or hearing things, seeing people double-gloving still. We're doing a lot to educate the workforce in

NHS in the UK. Our partnership with Manchester University Foundation Trust, we created a stigma module focused on educating people and that's been taken over 28,000 times now by colleagues there you know, we're doing a lot of good work, but there's still a lot more to do.

Jo McNamara (09:00)
That sounds absolutely incredible and obviously changing hopefully people's experiences and knowledge of HIV and AIDS, but also as well changing it for the better so that future generations don't necessarily have that stigma. When we talk about stigma, it's obviously the whole reason that we're doing an anal cancer awareness day. It's the whole reason that we are doing this podcast series. Emma, from your perspective, you know, for anyone listening who doesn't know anything about HIV,

know anything about HPV, what are they?

Emma (09:32)
Okay, so HIV is a virus which most commonly is acquired through sexual contact. It's a

chronic manageable disease as Alex has said you live with a normal life expectancy if you're on effective antiretroviral treatment which we normally try and start people on from diagnosis or as soon as they are ready to start that. HPV is the most commonly sexually transmitted infection within the UK. Most people who are sexually active will acquire HPV at some time through their life and our body normally will self eradicate that over sort of 12 months to two years.

There are many, many, many strains of HPV, the majority of which are harmless for us. But there are a couple of strains, particularly strain 16 and 18, which left untreated over time, run the risk of then causing malignancies. So HPV related cancers we know cause cervical cancers and that's why anybody with a cervix is offered the opportunity to have cervical screening

but we also know that they're really prevalent in head and neck cancers, vulval cancers, penile cancers, and particularly in anal cancer. So 90 % of anal cancers are caused by the HPV virus. And we're seeing those increasingly in people living with HIV for a number of reasons, really. First of all, we've got an aging population, which we celebrate. You live with a normal life expectancy, as I've said.

And these are cancers that do develop over a long period of time. We know that living with HIV can increase your risk of anal cancer. You're about 19 % more likely to develop anal cancer if you live with HIV. And if you're within the population of men that have sex with men, that risk is three times greater again. We know that HIV reduces HPV clearance.

We know that there can often be the risk of sort of repeat acquisition of HPV, and we know that there's sort of certain risk factors as well. smoking makes it harder to eradicate the HPV virus, Let me think, receptive anal intercourse can also increase risk factors as well for people, which I think makes me sound like a fun sponge, which I don't mean to be whatsoever, but we know that these are the risk factors. So what we're aware that sort of

can happen is that people over time after HPV acquisition can then develop what we call AIN, which is anal intra epithelial neoplasia. So these are sort of cell changes within the anus that can then go on to develop into sort of high grade lesions, which untreated will then go on and become malignant. Now, as I say, most people in life will acquire HPV.

And unfortunately, men aren't screened for it. know, women are screened through it, through cervical screening, but it's not something that's routinely offered for men presently. So very often people can be living with this for a long time when it's undetected. And the symptoms of anal cancer can very often mirror other things. As you mentioned, I mean, it's a rare cancer, this, but it's not rare within this population of patients. We see a lot of it.

But I guess if you work in primary practice as a GP, you might only ever see one case of anal cancer throughout your whole career because it is rare. And what we will commonly find is that people are presenting with symptoms of anal cancer. So that's maybe some bleeding. It might be itching around the anus. It might be lumps and bumps. But more commonly, people are being told that potentially they might have haemorrhoids. They're being maybe investigated for other sexually transmitted infections.

And sometimes things like bleeding aren't uncommon symptoms if you're having receptive anal intercourse, so often the symptoms are missed. HIV, we've talked about the stigma that still exists, although much improved stigma remains our biggest challenge. Anal cancer is possibly, I think, the most stigmatised of cancers mean, heaven forbid that disease is palliative at diagnosis, dying is stigmatised. So these are really huge challenges that we're trying to normalise conversation about.

Naman Julka-Anderson (13:35)
Where do vaccines play a role for HPV?

Emma (13:38)
Yeah, so HPV vaccine is the biggest changer. These cancers are completely avoidable. Cervical cancer, anal cancer, some head and neck cancers, penile and vulval cancers. The majority of them are completely avoidable with vaccination. So in school now at the age of 13, 14, all teenagers are offered HPV vaccination.

The oldest girls that had that are now about 30 and the boys followed about 10 years behind. So the oldest boys were about 20. And we know that numbers of these cancers as that population ages will reduce. However, anybody within the population of men that had sex with men up to the age of 45 is entitled to HPV vaccination. And anyone living with HIV is also entitled up to the age of 45.

And we really encourage that. The early vaccination is given and ideally before people are of sexually active, the better. But we do know that that vaccination can significantly reduce the risk at any point. So it's certainly something worth asking your GP or any sexual health clinic about and they'll be able to arrange that.

Jo McNamara (14:44)
It's really interesting, isn't it, about ⁓ vaccinations in schools, because I certainly know my son came home and said, I don't understand about HPV because that, you know, he was educated in the fact that HPV could lead on to cervical cancer, but it was interesting that as a boy, he thought, why do I have to have it? So there are stereotypes out there, aren't there? What's the uptake like of vaccinations, Emma?

Emma (15:08)
I hear what you're saying there Jo and I think actually at school age the uptake is good. I don't know the exact statistics to it, I have to be honest with you. But interestingly what you're saying I found replicated. have a 14 year old son who's been vaccinated at school and of my friendship group of 10 people the mothers of girls got their girls vaccinated but the majority of the boys' mums opted out and I was interested you know all for informed choice but do you mind if I ask why that is?

And I think in terms of HPV, we need to really educate that actually this is about men's health as well as women's. My educated friends thought that they were vaccinating their sons to prevent girls getting cervical cancer in the future. And I was like, absolutely not. You're protecting them here for their own health. And equally, who knows what relationships people will have going forward. It's not to say that necessarily the relationships will only be with women. So I think we need to really get that message out there that

HPV vaccination is for everybody's health, irrespective of your gender.

Naman Julka-Anderson (16:16)
Alex you talked about the George House trust, can tell us a bit more about that please?

Alex (16:21)
Yeah, so George House Trust celebrated 40 years last year in 2025. Obviously, originally we were set up to support people who were receiving this new diagnosis of what was AIDS and quite often we're making it and supporting them in a palliative way with counselling. Our services have moved on over the years and today we provide a number of different services, peer support and

We've got staff in the HIV clinics themselves across Greater Manchester and Liverpool. So they can literally see people who potentially have just received a new diagnosis or support people who've been living a long time. Emma mentioned around the fact that people are aging now with HIV and across the UK, 50 % of people, more than 50 % now are over 50 who are living with HIV. We have an Aging Well program that's designed to support those people

and the same team also, you know, go out to care homes, for example, and speak to organisations that support older adults to ensure that they're factoring HIV in how they support people and, you know, demystify some of those, the issues we see in those areas. We also have an intensive support programme here, so ⁓ that team are out in the community helping people to re-engage with their healthcare and their treatment, so supporting them to get to clinics.

You know, lot of the people that we support have a lot of unmet needs, living in, you know, poverty, have issues with housing. There's, you know, HIV and kind of those socioeconomic factors are really, you know, intertwined in a lot of cases, particularly more so amongst heterosexuals that we see living with HIV, but also impact gay and bisexual men as well.

Jo McNamara (18:03)
What's the impact been on the George's House Trust Alex? I suppose you can speak from your own experience, but also from helping and supporting others.

Alex (18:10)
Yeah, definitely. You know, it's...

I think I see it myself every day now, you know, someone coming in to visit a member of my team for the first time and then, you know, can see them, you know, weeks down the line about how much, you know, they might have a smile on their face or they're happier. We have another one of our programmes, our Skilling Up programme that supports people to get back into work and education opportunities and, you know, finding out that someone who's been supported with career coaching, life coaching, and then hearing that they've got a new job is, you know, transformative for them, but it just

makes me really proud of the work the team do as well and things like that. Our mission at George House Trust is a world where HIV holds no one back

you know, if anything, it's that balance for me here of making sure that we're here for when people need us. you know, I don't want them to be hanging around our centres and my staff, I want them to go out there and thrive and have their own lives as well. it's, you know, seeing people form their own social groups here and then, you know, finding out they're, know, having a drink in the village or something together. And that sort of thing is really nice to see as well. Just, you know, as you said, you know, there's not such a thing really as what normal is. But whatever that might be for different

people that's what we want people to be able to experience despite their HIV diagnosis.

Naman Julka-Anderson (19:21)
How have you found maybe speaking to employers Alex? So employers who might have their staff who are going through something like this at the same time and then coming back to work? I don't know if you have any experience with that.

Alex (19:32)
you

Yeah, we talk to quite a few employers. Sometimes, you know, we might speak to a group of employers, especially, you know, we've just had LGBT History Month here in the UK. It's a really good opportunity for us to get in the same as around World AIDS Day and things like that and be able to educate people around, you know, the Equality Act that we have in the UK that protects people with HIV from the point of their diagnosis, understand concerns that both employees and employers might have. I think, you know, as a

said before we've come quite a long way

there's still some work to do and it's just about finding, you know, that balance and making sure that if reasonable adjustments are needed, which is part of the Equality Act, that we can help, you know, employers and employees understand what they might mean. for example, when I was in my job that I was doing, when I was diagnosed, my employer really good at giving me the time to go to appointments, especially in those early period where you're...

potentially visiting your clinic fairly often. Now I just go once a year, so it's even less of an impact. And obviously I work at George Ash Trust and we fully support our ⁓ staff living with HIV to attend their clinic appointments. it's just those sorts of things.

managing medication, if someone's taking a pill and one of the side effects for them might be that they feel a bit drowsy, then we'd support them to have a conversation with their employer around if they're doing shift work, that they work days and evenings rather than night shifts, for example, it's that kind of thing.

I think fundamentally it's a person-centered approach and that's how we see everyone as an individual that comes in the door at George House Trust and that's how we advocate for employers to see people that are living with HIV who might be in their staff teams.

Jo McNamara (21:10)
Sounds really inspiring Alex of everything that you do there. Emma, what's your role? How do you kind of feed into the work that the George House Trust does?

Emma (21:18)
I've been really fortunate to make good links with George Health Trust. I'd have been lost without Alex and his team over this last couple of years. And I think in, you know, with regards to HIV care, possibly more than any other comorbidity that I work with, actually that third sector, the voluntary sector is absolutely crucial. The role of peer support has been a game changer for people living with HIV because, you know, as a health professional,

ou can tell somebody that they will go on and they will live well and they will live happily and they will thrive. But actually seeing that from somebody with lived experience and hearing that is unreal. We work closely with George House Trust. We recognise that people are living and ageing well with HIV, but we also know that cancer is the leading cause of death, of expected death for people living with HIV.

So we've been working on a number of initiatives around sort of accessible information for people about cancer risk, health promotion, things about screening and vaccination programmes right across the field of oncology. We've recently run quite a big anal cancer campaign for the black population and for the population of men that has sex with men and I appreciate this intersectionality within that

just to try and raise awareness, because it's certainly in my cohort of patients living with HIV, anal cancer is by far the most prevalent. And anal cancer is highly, highly treatable, highly, highly curable, but we know that the treatment trajectory for those that are suitable for it is really, really difficult. The side effects of treatment.

And sometimes the long-term and the late effects, we have a late clinic, a late effects clinic where I work. And often we're dealing with sexual dysfunction in continence issues or continence issues, as well as sort of the psychological and the social impact far, far, far beyond diagnosis. I think in terms of health professionals, what the work with George House Trust has been really helpful for me is...

the things as health professionals and health professionals listening to this where we can work harder and work better to support people living with HIV. The language is really important. There's a wonderful resource called the patient first chart or sorry, the people first charter, which is all about destigmatising language with regards to HIV. And I think that's something as health professionals we really need to tune into because we are the voice piece that the public sees health care through.

So your notice through Alex and my discussion, we talk about HIV acquisition, we talk about sharing status. We try to sort of avoid stigmatising language like infection, like disclosing status. You we want to really try and normalise these conversations. I think as healthcare professionals, it's also really important that we are aware if we're working within the field of oncology

that there are HIV oncology guidelines available through EACS, which is European AIDS Society guidelines, which mean that for anybody having treatment, either with radiotherapy or chemotherapy for any cancer, we should be prescribing prophylaxis for opportunistic infections. We should be cross-checking antiretrovirals with our oncological treatments. And we should be monitoring things like CD4 counts to make sure that we're supporting people adequately through treatment.

And guess we don't always know that working solely within the field of oncology. So those links have been really, really vital for that. And bringing lived experience to everything that we do, because Alex's voice of people at George Health Trust is the most important voice in this.

Jo McNamara (24:47)
And for anyone listening, will share links to all those resources as well. So you can go into the show notes and have a look and do some extra CPD and education after you've listened to this episode. So Emma, from your perspective, there's lots of complexities around supporting people with dual diagnoses and things. From your professional specific...

learning education, how should people kind of go about getting involved in not necessarily George House Trust, but finding those opportunities to learn more and then implement it into practice? Because as you said, there's a stigma. If people don't necessarily feel empowered within their clinical setting to go and make changes, what advice would you give them?

Emma (25:30)
Thanks, thanks Jo. I think it's just always to remain professionally curious, isn't it? To remain professionally curious and to make sure that your person, your patient, remains central to your care. We talk a lot about shared decision making, it's always important. I think never more than in this cohort of patients. We need to see people not by their disease, but as a person. Alex talked about person-centred care and holistic care.

And I think that never ceases to amaze me. You people will come into my care with a cancer diagnosis. They'll be living with HIV. As health professionals, we think that that is going to be the center of their world. And often, those are the least important things to those people at that point. You know, as Alex has mentioned, a number of our patients are living with significant complexity, transient living arrangements, maybe poor mental health, living below the poverty line.

living with internalised stigma, you know, on top of other things. And actually, I think of a handful of patients I'm supporting at the moment and actually their cancer treatment is just another thing and a list of challenges for them day to day. As health professionals, we can't be expected to know everything about everything. So be curious. I think it's not being frightened to ask people about their health, what it means to them

what are their biggest challenges, what are the things that bring them hope, comfort, joy and being willing to go off and actually do the legwork, recognise where you've got a learning need and go off and find the resources. George House Trust, other HIV charities have fantastic resources that we can access. Large cancer charities like Macmillan, like Cancer Research also have specialist information regarding HIV and cancer.

So it's being inquisitive, isn't it? And not being frightened to admit that we can't know everything about everything all the time.

Jo McNamara (27:29)
Alex, from your experience and maybe hearing other people's experiences as well, what's the things that you would want to change within healthcare? It might be a long list, so you might have to be quite succinct about this.

Alex (27:37)
Hehehehehe

Emma (27:41)
How long have you

Alex (27:43)
I think for me it's about taking on board what Emma said about being professionally curious and you know not assuming that for example HIV isn't something that affects your field of medicine or your area of expertise and you know things change all the time and also I think for you know for me and my teammates there's something about us being curious about other things as well as we know we all grow older with HIV. Emma's done an amazing job at like educating us about anal cancer over the past few months and

and it's been interesting for us to learn more about that.

people in my situation, for example, I had the HPV vaccine at the age of 33, so I'm likely exposed to it well before then. I think it is important that we don't shy away from these topics that can be difficult to have with the people that we support as well. And I think having an approach where we work together and these partnerships is something that's a strength. And the recent anal cancer campaign was something that came out of

our conversations and working with Emma and speaking to her about what was going on around Liverpool in the Clatterbridge Centre and I think it's just about building on those and we've had a lot of interest from other parts of the country following that work and I think it's about sharing that information and supporting each other wherever we're working to be able to replicate those initiatives.

Emma (29:03)
Just to follow on from what Alex has said there, we just want people to live their best lives and to thrive. We are never here to pass judgment. We will accept people into our care at any point. And even if people have fallen out of HIV care for a period of time, they are welcome to come back in at any time whatsoever. I think particularly around discussion of anal cancer.

We really need to make sure that this is sex positive. We want people to go and live good, happy, healthy sex lives. We're not wanting to, you know, add to the burden that people commonly carry psychologically. You know, it's not uncommon that people have a high level of health, of self stigma, that maybe they have done something to acquire their HIV virus in the first place, which as we know is not the case. And the same then when people receive a diagnosis of anal cancer. So we want this to be...

know, destigmatising, we want this to be sex positive, but people just to live their best lives, but with an awareness of what they can do to help protect their health and know that if they need us, we're there for them 100%.

Naman Julka-Anderson (30:08)
Can I just quickly follow up Emma and Alex? I'll probably come to you first Emma. For any maybe commissioners or people who hold the purse strings, if anyone's looking at survivorship clinics or late effects clinics, things like that, what aspects of this should they consider if they want to look at that in the UK?

Emma (30:24)
The biggest aspect that I consider, and this is based on a lot of research we've done of our local cohorts of patients, I am really mindful that commonly, not always, but commonly, my cohort of patients often won't have a voice in healthcare. You know, I don't like the term marginalised groups or hard to reach groups, because actually, I don't think there is such a thing. We just have inaccessible healthcare. have Monday to Friday, nine to five largely English speaking healthcare

but actually commissioners and services might not be aware of the challenges for people living with this particular comorbidity and all comorbidities are important, but there is a direct correlation between HIV causing cancer. So there's a real link here and we need to be really mindful that often our population's voice needs amplifying within healthcare because we know

that there are barriers to approaching oncology care if you're LGBTQIA. We know that there are barriers if English isn't your first language, if you're codependent on other substance. You know, there are a number of barriers for not all, but many of our patients. So it's not waiting until these challenges come to us. I think it's identifying the gaps and going and finding the people with a lived experience because they can answer the questions about what we can do to improve services far better.

I thought I knew this field of care well, but it's only actually working really closely with people living with these conditions that I realize, no, we don't, we need different models and it needs to be led by the community by whom it affects mostly.

Jo McNamara (31:57)
We always said that about Rad Chat as therapeutic radiologists. we know everything about radiotherapy and oncology. We know what we're doing. And then you interview patients and you're like, my whole career is a farce. I know nothing. And you learn so much from patients. Alex, is there anything that you would add to that from a commissioner's funding perspective?

Alex (32:15)
I think for me it's around taking a step back and looking at the preventative measures as well. It's great we've got the vaccine now, but Emma said before screening is still an issue for men in the UK. I think that's something for me that I hope that we can still have ongoing conversations about at a national level. Actually being able to find people, treat them early.

Understandably there's issues with you know money and things like that and it becomes problematic but I think on the whole it's just also just

I think for whole, know, everyone who's involved in healthcare, whether you're commissioning it and delivering it or, you know, your third sector partner, it's just about having these open conversations and being open to partnerships that bring in lived experience, that listen to the voice of the people who are affected by, you know, HIV or cancer or both. then being able to feed that back into the system and to listen to those voices where improvements can be made rather than...

you know, hoping that they'll stop complaining or anything like that, whether something's gone wrong.

Jo McNamara (33:22)
Yeah, so we always end the podcast episodes with top tips. Would you have any top tips for listeners, whether that's patients, whether that's healthcare professionals? I suppose I could direct them, can I? could say Emma, can you focus on healthcare professionals and Alex, can you focus on maybe people living with HIV? Emma, should we go with you first?

Emma (33:42)
Strap in, I could be here all day. Really good. So top tips, I think as health professionals, we're all still patients, aren't we? Get tested, you know, you either don't know your HIV status or you do. So get tested, testing is free and it's accessible. For healthcare professionals, it's be curious, be inquisitive. And I think know where to go to seek support and guidance.

Jo McNamara (33:45)
We love it.

Emma (34:07)
And more than anything, really examine yourself for maybe microbiases that you don't even know that you hold. Think about your language, talk to your patients and seek their priorities and make those yours rather than what we might see as the most important agenda.

Jo McNamara (34:23)
Amazing, and Alex?

Alex (34:25)
I

think for me first of all it's never feel like you're going to be in trouble, you're going to be judged if you feel like you're at a point in time where you need some help, come and ask for it from those of us who are willing to support you.

And then I think, particularly around anal cancer, because it is such a, it can still be such a taboo topic, I think it is about, don't be afraid to have those conversations with your GP or with your sexual health team, your HIV team, and also, know.

build your confidence around being a confident patient and you can be polite and challenge decisions if you don't feel like you're being listened to and if you need support, there's organisations like George House Trust who are here to advocate with you as well.

Jo McNamara (35:09)
I both think you're doing just such an amazing job, like you're both so inspirational to talk to. So thank you so much for taking time out of your day today to have this conversation.

Alex (35:17)
Thanks.

Jo McNamara Rad Chat Host (35:39)
So what do you do now? Well you can use this episode as part of our free continual professional development accredited content which offers flexible learning that fits your busy schedule. Just check out the show notes for the reflective questions, links to literature and resources and link to the completed form to receive your accredited certificate.

Naman Julka-Anderson (35:58)
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Jo McNamara Rad Chat Host (36:08)
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Naman Julka-Anderson (36:31)
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Jo McNamara Rad Chat Host (36:46)
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