Transvox - 'Whatever it Takes' Update

[00:00:07] Hi and welcome back to Transvox and it's actually a joy every now and then to be able

[00:00:12] to bring a sense of what's going on in the world. And what was going on in the world

[00:00:18] back on the 6th of April? Was that we had a couple of podcasts, guests, Casey Monday

[00:00:23] and Stevie Corbin Clark who came into talk to us about whatever it takes project. And it

[00:00:28] was a collaboration between Bournemouth University and a range of other organisations which

[00:00:32] we will talk about a little bit more depth in a minute including Beyond Reflections to have

[00:00:37] a look at cancer screening services for the transplus community. And we talked then about

[00:00:42] the project getting started and sort of a new way of thinking about research using

[00:00:47] trans people at the heart of a community led approach to research. And I invited the team

[00:00:54] to come back and talk to us about how things were going and I'm delighted to say it's sitting

[00:00:58] in front of me today on a Barney Tropical Island from the beginning of September,

[00:01:06] it's not Barney, it's not Tropical but it is September I'm joined with by Kate,

[00:01:10] Jupp and Amanda Durant who are part of the project and are going to bring you some

[00:01:14] speed with what's going on where things are and how things are going. So first of all good morning

[00:01:20] Good morning Gillian and thank you for welcoming us. Have you used a bling?

[00:01:25] It's an absolute joy. I'm under how you? I'm good thanks. Thank you for having us.

[00:01:30] It's an absolute pleasure. Look for the benefit of those that can't remember or

[00:01:36] it's just dropped out of the memories of it. Can you just sort of go to the project a little bit

[00:01:40] for us maybe? Maybe Kate if you start first and then we can talk a little bit about how things

[00:01:45] have developed. Absolutely. We'll tag team Amanda for a week so I'll go first.

[00:01:50] I'll go this part of whatever it takes. All of the projects are kind of a body of work looking at

[00:01:58] doing in partnership with healthcare providers, whatever it takes to reduce healthcare inequalities

[00:02:08] as the cancer outcomes and this project is what we've called tech and that is trans aware

[00:02:17] cancer care and we it's a community-led project as you said so we have four five community

[00:02:25] researchers that we recruited through the Andrew Flexions. So there are people with

[00:02:32] so trans community researchers who are who we are supporting with Bournemouth University

[00:02:42] Amanda is supporting a well in the world beyond reflections of supporting and helping

[00:02:48] care around some of the other communities partner on the project supporting the community

[00:02:53] researchers who connect with and hear from trans people, their experiences of accessing cancer care

[00:03:05] and we're much further down the line than we were when you spoke to Steven and Kate see it

[00:03:10] and one of the things I think was learned really importantly is that we've needed to take a step back from

[00:03:21] experiences capturing experiences of accessing cancer care and looking at accessing

[00:03:27] any form of healthcare including the avoidance of accessing healthcare because if you're not

[00:03:35] accessing healthcare you're not going to be accessing cancer screening or any form of cancer

[00:03:41] services. So you see the cancer screening is a subset sector of a wider problem or opportunity in

[00:03:49] at absolutely and that actually with the project organically changed when people were saying oh

[00:03:56] I don't have I don't have anything relevant to say and there's a really the conversation in

[00:04:06] the workshops um actually they had a huge amount that was what was really relevant and what

[00:04:14] really wanted to say and um taking the approach that everything in development to say

[00:04:22] at these but I'm aware of that and that has just re-cute rewards for the project.

[00:04:28] Okay good anything else to add on that side of the mind? I think I think it's been an IOP

[00:04:35] for us we really focus in on the cancer experience to start with um but actually

[00:04:44] it's even more important to focus in on the earlier part of any healthcare pathway because

[00:04:50] that's where it all begins and if that's a good experience people can keep moving along their pathway

[00:04:55] with confidence that they're receiving the best care so I'm delighted that we've been able

[00:05:02] to identify that element and move forward with that because that's where perhaps some of the

[00:05:08] real early work needs to begin. And so before we sort of unpack it a little bit to be useful

[00:05:15] to just know what your rules were within the project so going if you're on a carrier and that

[00:05:19] that'd be great. So I was recruited into the project probably half halfway through the

[00:05:29] organizational phase and I'm a clinical nurse specialist from the cancer care background.

[00:05:36] So I bring all of that experience to the project but what's been absolutely wonderful for me

[00:05:44] within this project is to hear the real experience of people using our services because whilst you're

[00:05:52] interacting with somebody in a service you're doing the best you can but you don't always know what's

[00:05:58] all the effect of that to people who leave the clinic room so for me it's been a truly

[00:06:04] wonderful experience. Oh fantastic okay okay what was your rule through the process?

[00:06:11] So my role on the project is as a peer officer so that's sort of the pillar that sticks out into

[00:06:18] the water and that's a public involvement in education and research so my role in the project

[00:06:24] is to support the public involvement so that's the community researchers on the project and

[00:06:32] that support has been designed and with by the community researchers so whatever support they need

[00:06:43] is identified and that has changed throughout the project and it's a flexible approach.

[00:06:48] I've hopefully been able to provide. Okay. Fantastic. Where's the project now then? What stage are you

[00:06:56] at? So we have finished our collection of experiences and stories through the running of

[00:07:16] we are about to share the findings and our very creative outputs at celebration events on the 25th

[00:07:27] September. Oh fantastic and fact it's in it's in Saturn. It's not what it's like.

[00:07:34] It is it is in Sanctuary and one of the things I was thinking now I sound really excited so

[00:07:45] actually the higher the scenes were in the panic stage of pulling every scenes together right in the

[00:07:49] report and I'm really focusing on doing justice to that live that experience and the stories

[00:07:58] that part of the Pants shared with us and all the work for community researchers. Yes I mean anyone who's

[00:08:06] familiar with any sort of research knows that the exciting bit is actually the deterioration and the

[00:08:14] interaction such like and then there's this gruesome bit at the end which is right in report

[00:08:18] editing it and proofing it and referencing it which is something it's firmly familiar to all of

[00:08:23] us so it would be great to get that point in September and be able to really celebrate what's

[00:08:27] what's come out. So I know you were at Pride recently as well what was the reason to be

[00:08:32] attending those? Well we set up some outreach workshops and they were advertised through beyond

[00:08:43] reflections and we had a good attendance and we generated a lot of squares for our flag but we wanted to

[00:08:52] have an opportunity perhaps to go to a different kind of event with beyond reflections and just

[00:08:59] get a comparative feel really for how we could generate square. We worked confident, we'd had a nice

[00:09:06] room and tables and set everything up at our workshops but this was a workshop under a gazebo

[00:09:13] in what could be the British summer's rain you know and so we took all our things and we thought

[00:09:20] let's see well it was an amazing experience. We were overwhelmed by participants wanting to make

[00:09:29] her contribution at all the pride that we went to. So I think it was really an important part of

[00:09:40] research project to do our workshops in various environments because we've been able to generate

[00:09:49] a large flag now. We have so many stories and so many of you to share we've got a real breadth

[00:09:57] of experience which we might have had. So before you get into what you found I'm just fascinated

[00:10:03] know what you mean by this flag. So what's the flag thing? Well Julie when you were saying you know

[00:10:09] that hard work about the report I was desperate to share actually we do have to write a system

[00:10:21] world report for the funder will make sure that that really exciting we're going to do and this

[00:10:31] all been designed by the community researchers that are going to do a really creative report

[00:10:37] and their days in will be a zine about the creation of one of our probably the biggest output

[00:10:45] that we've done so the report will be well a zine which will fit inside the report but also

[00:10:49] works stand alone will be about the creation of the flag. And with that two people stories

[00:10:59] so trans people's experience and I'll always experience experiences and stories and what

[00:11:06] they wanted to say on a tattoo work where the trans flag comes. Okay and that can be in written form

[00:11:18] creative art sites you know sewing 3D, gluing sticking what absolutely whatever and using that creative

[00:11:29] art approach to to facilitate the sharing of experiences sometimes when words don't quite

[00:11:38] feel right in the place or hard to find and work using the two together works really well

[00:11:48] but equally for some people that hasn't felt right so another kind of being flexible and

[00:11:57] thinking about access to the project and sharing stories we developed zacchats. So zacca is one of

[00:12:05] the community researchers on the project and they also did an offered online conversations on

[00:12:13] a one-to-one basis for people that chose to their experiences that way and we've captured those

[00:12:18] experiences onto the flag as well. Fantastic so basically it's like an living embodiment of

[00:12:25] the themes, the ideas such like have that time. It's quite an interesting snapshot as well as

[00:12:31] a live artifact. Absolutely we hope it goes on to it and it's massive so we've got 94 squares

[00:12:40] so I think it's going yeah it's going to be several meters by several meters. That's going to be

[00:12:46] some large flag and that's going to be displayed in sadhampton of the in the celebration event

[00:12:51] so lots of photographs and yeah absolutely sharing on social media and that's sort of the

[00:12:57] and equally we hope it will go on to other places you know the the atrium of hospitals and

[00:13:07] that sort of thing another event. That's really great so Amanda you kept saying you were very

[00:13:12] struck by the sort of themes that we're coming out first I'm just interested in no just to

[00:13:17] back to that commentary made that you said there was you had a sort of different sort of

[00:13:23] interaction between the sort more formalised sessions and this sort of more gritty,

[00:13:28] real sessions at prides and such like with the difference in the and it's where there were

[00:13:32] there were difference in the smth shit matter I was the subject matter I was the um

[00:13:36] was the feedback the same across the piece but just given in a different sort of way or did you find

[00:13:41] different themes coming out a different sort of environments? I think they were different.

[00:13:49] I think that the workshops venues that we set up on reflection whether we because we set them up

[00:13:59] you know quite perfectly whether that influenced the way people responded I'm not I'm not absolutely

[00:14:07] but I did wonder personally whether people who were attending a pride were already

[00:14:15] bullied up by that attendance that they felt ready to share um there are stories and

[00:14:23] I think the other thing is in that kind of environment it's not perfect and so the need to

[00:14:37] some vibrant music and everything at a prides which just is in keeping with sharing the freedom

[00:14:44] to share the story that you have really. The other things that was really good about the prides

[00:14:52] was that our community researcher they went out and about speaking to people who were in the

[00:14:58] attendance sharing information about our project and lots and lots of participants came to our stand

[00:15:05] that way and I think that approached the team from approach work really really well.

[00:15:13] If the customers are a lot of research about trans healthcare and such like so

[00:15:18] I mean I mean so this sounds differently set up and differently the process sounds different

[00:15:23] it sounds much more engaging to do within the community um how will it differ how will it make

[00:15:29] an impact you think further on down the line? I'll come back to some of the processes

[00:15:33] but I'm just a bit intrigued because a lot of trans people are quite perturbed about primary care

[00:15:38] and any sort of access so and I'm listening to you and I and I'm and I sure have no problem

[00:15:43] with community see us on this you sound absolutely wonderful and very welcoming but sometimes

[00:15:48] I would say that the vast majority of people interact quite well with the with healthcare

[00:15:55] but there's a big fear or a perception of fear is that something you found or was that actually

[00:16:02] hundreds of hundreds of very very poor experiences? I think there was a balance that

[00:16:09] the community agreed to keep that there was there were definitely people who shared

[00:16:15] negative and difficult experience and I hope that being able to share them was helpful

[00:16:22] because we are listening and we do have really excellent context and I'm sure Kate will talk

[00:16:28] more about that with the NHS who are looking very hard at how they could improve

[00:16:34] and are looking for some guidance about the way forward for that that would meet the needs of

[00:16:39] the community but I think the other thing was that there was quite a bit of balance

[00:16:46] and people did share with us good experiences or shared with us the elements that made the

[00:16:52] experience good even if it wasn't completely good this particular thing made it good for me

[00:16:58] and I think those are the important takeaway things initially to share with the NHS but there

[00:17:05] is so much depth in information that we have. Do you want to add to that, Kate?

[00:17:12] One second, that was then we have a lot of sort of end-of-pun of social and so we've shared

[00:17:17] how the project of capturing experiences of chance people in that something healthcare

[00:17:24] and how we develop that and capture those experiences. We have also been working

[00:17:36] to understand the experiences and the needs and the requirements and the asks of healthcare professionals

[00:17:45] and what they need to support them to meet the needs of the trans people because they

[00:17:52] recognize that there is a gap, they recognize that the recognising,

[00:18:00] except the really equalities in healthcare and they want there is a real desire to do something

[00:18:05] about that and so we have held two webinars with healthcare professionals

[00:18:13] to understand the as they've had, the as for some training and beyond the collections of

[00:18:18] done some trans training and whilst this is very much the tip of the iceberg in terms of what they

[00:18:26] require and what they want and the start of this work, this project is very much about building

[00:18:32] those relationships and developing the connections and the networks so that in the follow-up

[00:18:39] projects the funding is in and we're very hopeful that we get that funding which is a bigger project

[00:18:45] will bring those two worlds together more completely so bringing bringing the healthcare

[00:18:54] professionals or group of healthcare professionals and a group of trans community researchers,

[00:19:00] trans people together working in partnership, participating together in a process on

[00:19:08] having over two three years to really develop the pathways and the ways to reduce so

[00:19:16] cope with in the way that works for everyone to reduce as health inequalities.

[00:19:22] I think it's been a good project because it's helped us to understand that probably

[00:19:31] the project is kind of a mediation between the trans community and the healthcare community

[00:19:37] and finding some compromise that will fit and reward both parties in their way forward.

[00:19:46] I'm quite excited by what you just said both of you there that idea that we we probably think too much

[00:19:51] well we may be a thought insufficiently about the needs of the healthcare practitioners as well

[00:19:56] because I know certainly the work I do is an alter about giving people confidence because

[00:20:01] they're in a place sometimes where they're not sure what to do and so they sort of don't do

[00:20:05] anything because the scared that whatever they do do might be the wrong thing and it's that

[00:20:10] thing about saying it you know probably both parties have similar objectives which is to

[00:20:15] to provide brilliant healthcare and get people better quickly and if you're a trans person

[00:20:20] you want great healthcare and you want to get better quickly so it's like I love that phrase

[00:20:25] mediation I think that's that point isn't it there's a sort of there's almost there's always

[00:20:29] a suggested rift between the two communities but there's not as there there's actually just a lack of

[00:20:36] maybe knowledge or skills or resources to make the thing we stick together and sort of click

[00:20:40] together as a pair of cogs and mix it all my metaphors into one along with power sentence but I

[00:20:45] just wonder if Kate if that's sort of sad ring true. What really true and absolutely so from hearing

[00:20:52] stories of trans people who are growing up work-shops there has been that sense that of

[00:21:03] they're only receiving end to the panic of a healthcare professional but it's been a barrier

[00:21:08] to care oh oh yeah of course I'm not trained for this and actually you know they needed their

[00:21:15] heart monitor or something like that but absolutely byline panic that led to would you lay in

[00:21:20] healthcare and then also something that you said that word mediation providing that space that

[00:21:28] saves us space for the two worlds to come together to work together in a way that

[00:21:37] web that that says it a web trusted built and developed and that is okay to share your concerns

[00:21:45] as how healthcare provides us. Like you know I'm concerned about I think quite harsh to say

[00:21:52] I'm right but concerned I think of the word that's a valid thing to project as well that's okay

[00:21:57] to say I'm concerned that and that works both ways and I think the key one of the keys to

[00:22:05] the to this project has been working out how to create that safer space that works up space

[00:22:13] whether it's under a gazebo in a prize with music, I may not hear anything so I'm

[00:22:19] dreams coming under and then it's boiling up and you know I'm just saying to get we did it

[00:22:24] we absolutely did it we did it in a and a workshop with setups specifically for the project where

[00:22:33] the flow is beautiful the access was perfect you know people kinds of two hours and shared

[00:22:42] estate and the were refreshment are the fact that same focus and I've lost the word that

[00:22:54] that same effort to to focus on the space that creating the space because we're in the right

[00:23:05] people into the right space then the magic will happen. Yes that's interesting

[00:23:11] and I've got all sorts of analogies in their head now so I'm going to just put them all

[00:23:14] to one side so you've got the big celebration and it sounds like you're bidding for more research

[00:23:18] and that's what's next is that that's the that's the next stage is that how it works?

[00:23:26] Yes I'm a an NIHR National Institute of Health and Social and National Institute of Health

[00:23:35] Research but it's health and social recovery search ofology and funding project and it's a

[00:23:42] program development grant so very much thinking that it's a piece of work that goes before

[00:23:49] I'm much bigger piece of work, taking out the methodologies of that community ladder approach does

[00:23:56] it work I think we can very confidently say this works really really well on this project

[00:24:01] um the whether or not it's possible to engage with the health care professionals

[00:24:09] bring them into the same space with the community research and the trends community

[00:24:14] and co-design and co-design solutions and we've already started that process and we know

[00:24:22] that that works so this project is in the pre-class that we're a three-year project

[00:24:27] that the application has already gone in and hopefully it's one of those projects that has early

[00:24:34] insights so actually the the process of actually changing starts so you're not worried to be at

[00:24:39] another three years to actually sort of come back with another report and then something like

[00:24:43] change because actually that's sort of a that's a research the NHS is sort of right for that

[00:24:49] sort of stuff but it sounds like you're thinking of a more dynamic approach and you know getting

[00:24:54] practice to change much more quickly and those changes have already started to happen so

[00:24:59] other partners on the project that we've got with this country reliance and muck milling

[00:25:05] and the general practitioners and the healthcare professionals in those focus groups that we

[00:25:09] have with the stakeholders have already taken back to their place of work the insights from

[00:25:16] the early squares that we captured from some people the conversations that they're

[00:25:23] with the community researchers in those sessions and everything that they've learned from

[00:25:29] the training that they've had with the underflections that was so valuable and so greatly received

[00:25:37] by the healthcare professionals that those changes are already beginning to happen

[00:25:42] and that's a really like you've highlighted that in that's a really important part of this

[00:25:49] project and the methodology that we work that change begins to happen the the minute

[00:25:56] that we start around the project. Wow well I thank you so much for spending time with

[00:26:03] this today it's been absolutely amazing have you any sort of final thoughts before we part of

[00:26:08] company okay anybody with thoughts anything else you want to say about the project or are you

[00:26:12] all talked out? I would like to say that it's been and that it is an absolute privilege to be part of

[00:26:20] this project we've got a fantastic team and it's just been such a great project to be part of.

[00:26:32] So does it, Amanda we thought that we'd have a final thoughts? I echo that completely I've been

[00:26:38] absolutely delighted not to be welcomed into the team in the way that I have and I wish just

[00:26:45] well we were just talking just reflecting on things and my final reflection is that those

[00:26:51] squares and creative ideas were given with you know real love and thought from the participants

[00:27:00] but also I think you really picked up on the fact that the healthcare professional side of things

[00:27:05] are reproaching their elements with the same consideration and need to provide a good service so

[00:27:14] I think there's a real meeting point there that we're going to be able to capitalize on from this

[00:27:21] project but also I'm going. I love that Amanda and I also think and a word that came up and it came

[00:27:29] today is also excitement on both sides to get this to to to to get this right and so I'm

[00:27:39] not an excitement to get it right and to make healthcare better. That's a fantastic note of

[00:27:46] finish on thank you both so much for spending time with me today and we'll link to all

[00:27:51] all the various links that need to be linked to in various episodes and um okay Amanda thanks very much

[00:27:57] to your time today. Thanks for listening to this episode of Transvox it's been a joy to have you with us

[00:28:08] if you want to make contact with us you can contact us at Jillian at transvox.co.uk and if you'd like

[00:28:17] to support the work we do please go to Patreon and go to page Transvox and all of our money goes

[00:28:23] to our nominate charity and Jen you've chosen the charity for the next number of episodes which

[00:28:28] one of the chosen. Our charity is called Beyond Reflections which is a charity that provides

[00:28:34] support and counseling to trans people non-binary people and their friends and their families

[00:28:39] across the UK and amazing charity doing some amazing work really important so please if you can give

[00:28:46] great and if you want to go and have a look at Beyond Reflections it's beyond hyphen reflections

[00:28:50] that all got you okay and but as I say if you'd like to make a contribution to what we're doing

[00:28:55] because we love to help the people who are well-pots. Again if you've got ideas for the show things

[00:29:01] you'd like to ask us questions, comments, applause or brickbats feel free to send it all into

[00:29:07] Jillian at transvox.co.uk until the next time goodbye bye bye