Let's Talk About Brain Tumours
Join us as we talk about all things brain tumours with those who have been diagnosed, their friends, parents, partners and children as well as with researchers, fundraisers and advocates. Find out how The Brain Tumour Charity is working to improve outcomes for those who are diagnosed with this unforgiving disease.
Please Note: We recognise that everyone's experience's are unique. Our guests are sharing their own personal experiences of diagnosis, treatment and care. These may differ from yours or those of your loved one.
Let's Talk About Brain Tumours
Episode 63 - Getting involved
In this episode, we'll hear from four of our much-valued Involvement Champions : Rebecca, Oriana, Claire and Mark.
We recorded their presentations to the whole organisation as they explained why they wanted to become key voices in the brain tumour community. (Trigger warning, they talk about diagnosis and mental health issues, and their stories are very moving.)
Then our host Anna Blyszko - a former Young Ambassador herself - quizzes The Brain Tumour Charity’s Involvement Manager, Rachel Roberts, about what exactly our Involvement Network aims to achieve and why we've launched a new initiative called The Listening Project.
If you're interested in becoming an Involvement Champion, recruitment for the next cohort begins in late summer 2025. You can find out more here.
If you or someone you know needs a listening ear, you can contact our Support Team by calling 0808 800 0004 or by emailing support@thebraintumourcharity.org
For general information about the podcast, you can email podcast@thebraintumourcharity.org
Anna
Welcome back to the Let's Talk About Brain Tumours podcast. Today, we're hearing the personal stories of four people who are volunteers at the Brain Tumour Charity. Rebecca, Oriana, Catherine, and Mark are all Involvement Champions. They help ensure that the Brain Tumour community is at the heart of decision-making at the charity. Then we'll be chatting to Rachel Roberts, who works in the support team at the charity as an involvement manager. She'll tell us what the Involvement Network is, why it exists, and what it hopes to achieve. Listen in to find out how you can get involved too. But let's get started by introducing you to Rebecca, Oriana, Catherine and Mark, four of the current cohort of Involvement Champions.
Rebecca
Right, so many people know me. Many people won't. I am Rebecca one of the involvement champions but some people have met me previously because I was also an ambassador and you just can't get rid of me this is easily! A really big milestone year for me at the charity. It now marks 14 years since I was diagnosed at age 14 potentially at the time a milestone we didn't know if we'd really reach so a really big one for me. I'm really excited to be here to talk to you. My diagnosis story all had in a complete whirlwind. I had had a few headaches here and there - nothing you'd really think to worry about and then went on a lovely trip to London with my family and I turned around to my mum and I said so weird that they would put two post boxes right next to each other and my parents just kind of looked at each other and thought there is only one post box there like what's going on and that's when we realised that I hadn't even noticed I had got double vision and this then kind of started a complete whirlwind and I was very fortunate that I did get quite quick diagnosis, predominantly because as soon as I went to the opticians, they sent me straight to AIDI and they said, you know, something's not going on here. Initially, they thought blood clot and we thought, okay. And they were like, don't worry. It's not anything to be worried about. A week later, I was in hospital having surgery. And then I was in hospital for about five weeks. Picture of me there. Post surgery number one or two, I had about four surgeries altogether. And yeah, you know, it was a really pivotal time in my life to be impacted by a brain tumour diagnosis. I ended up with a follow-on condition that's left me with kind of chronic health problems. And the main challenges I really experienced being kind of a teenager going through this was suddenly there was all this social isolation. You know, all I wanted to do was get back to school, was to see my friends, was to live this normal life, was weirdly to do my GCSEs. I was diagnosed in the August and my GCSEs actually started in the January so I was like no no I've got things to do like I can't possibly have all this time off I mean what 14 year old wants to go to school but it's all I wanted to do and as I kind of aged and progressed with kind of my chronic health challenges it just became really apparent that like the education system wasn't set up for someone with a chronic illness particularly an invisible illness that people just couldn't understand that the needs you might have And so I had to work really hard. My parents had to work really hard. I didn't even get extra time for my GCSEs. You know, I didn't get any rest breaks. It wasn't until university that I actually accessed potentially the support needs that could help me because they just didn't know how to tackle it. It was then the same kind of when I went on to the workplace of thinking, okay, I'm a young adult entering the workplace. This was pre-COVID, so working from home was kind of non-existent. And thinking, how can I make this work and how do I explain to an employer that this could work? And it was actually as a young adult that I discovered kind of the brain tumour charity and became a young ambassador my mum kind of sent me this Instagram I'm sure it was an Instagram story saying like have you seen this you should definitely like get involved in this and it was actually life-changing for me like I met a complete community of like-minded people who even though you could talk to your friends they could never really get it And joining this community, it was just people who understood and who you could talk openly and honestly. And it made the biggest difference. Gave that sense of belonging. Like everyone always says, the club you never want to be a part of, but it really is. And I'm not sad that I'm a part of it. I then just couldn't get rid of me and I became an involvement champion. Predominantly because as I aged, the problems that I was experiencing didn't go away. They just evolved into new challenges, challenges that continued like in the workplace. And so I wanted to kind of be able to be a voice and also engage in this community and meet more people who had been through similar things. It has been a really important role to my whole life, to be honest. It's given me confidence. It's given me assurance. It's given me friendships and community and belonging. And yeah, That doesn't mean it's always been easy. I've had to really work hard. And some of the people in the room who know me from being a young ambassador know I've worked really hard to make sure I don't say yes to everything because I want to be involved in so much. And I think that's been the benefit of these different roles is that you can really kind of get involved where you like. And a particular kind of highlight for me recently has been I got to go to the Sandpit workshop, which was kind of bringing multidisciplinary teams together with the research team to try and tackle the challenges, particularly focused on pediatric quality of life. And I'm really excited that our grant proposal has been accepted. So I'm now going to be working with a team of people all across the country to try and kind of start to tackle some of these massive issues through a research project. We're doing a bit of a meta-analysis. you will see as time goes on how that is progressing. But it has just been kind of, it's just been so life-changing and an absolute club I'd never want to be a part of but would never change. But I'm super, super passionate about kind of supporting those young people in all those transitory periods. So if there's ever anything that anyone wants, I'm going to do a bit of a plug, I'm more than happy to get involved. So thank you so much for listening to my story and I'm going to pass over to Oriana now.
Oriana 06:19
So - my dad. That is the reason that I got involved with the charity. He was a kind and generous and funny man, a huge family man and my biggest cheerleader. He also suffered mental health issues for decades and he'd been sectioned for that quite often. So during Covid when he became unwell mentally with what seemed like a more extreme version of his previous manic episodes, we were assuming it was that, but something felt a bit different. He was also having physical issues with mobility and coordination incontinence. He became aggressive, which was very unlike him. In March 2021, he was sectioned, and after three months of being passed around psychiatric hospitals, he stopped eating and drinking, and he was transferred to a general hospital for them to put a feeding tube in place. When they x-rayed to check that this was in place correctly, they said they'd seen something unusual. So they sent him for an MRI. And the next day, when my mum and I were at the hospital, oncology asked to speak to us. And I stupidly still didn't connect the dots on the way to that room. But obviously in that room, they told us that he had a massive brain tumour. He died three weeks later, having been moved to the hospice for the last week. We chose not to tell him about his diagnosis because he wasn't well enough to understand. He wouldn't have remembered. But they did remove his section before they removed him to the hospice, which is something that was really important for my mum because he hated being sectioned and it shouldn't have happened at that time. If he'd been scanned instead of sectioned... the outcome wouldn't have been different, but we would have had a much better time with him in those last months, which is why I'm really passionate about work around earlier diagnosis. But this role for me isn't about my dad anymore. And I think that he would be proud of that because it's about the people I know with diagnosis now. It's about the children who are still going to be diagnosed. It's about hope. And it's about kind of bringing my dad's story to try and help change things for the future. The biggest challenge for me in this role, apart from finding toilets on the day of the marathon, was actually learning that my dad's story isn't unusual. It was gut-wrenching when I realized how many others also only have days or weeks between diagnosis and death, and how many are misdiagnosed, especially those with previous mental health history. But since then, I've had a lot as well being involved in this role. in particular the most amazing group of people that I've got to work with my fellow involvement champions uh recently for me um a highlight was meeting Scott Arthur. We'd had some emails and tweet exchanges when he got his ballot place so it was quite emotional being able to meet him at the parliamentary drop-in session and thank him for his work on the rare cancers bill. I went to the second reading of the bill on Friday. The Brain Tumour Charity was mentioned numerous times throughout the debate And Scott said something about me, and I want to read just part of that because I think it's pertinent to what we do and a lot of the people in this room. He had mentioned meeting me and posting about it on Facebook and something that somebody had replied on that. And he said, And I think what he said at the end there is true about a lot of people in this room, whether you've lost somebody you love or whether you've lost part of the life that you had before a diagnosis. So if we're ever doubting whether we're seen and heard, for me, that was a huge reminder that we are seen and we are heard. And I'm extremely grateful to you guys for trusting me to represent the charity and for letting myself be heard and letting my dad's story be heard. And I'm going to pass it over now to Catherine.
Catherine 10:26
Hi, everyone. I'm Catherine, a mum of two, wife of a loving husband, youngest daughter to loving parents, and a sister to a loving brother and sister. Also a full-time teacher. Since being diagnosed with a glioblastoma in the summer of 2016, I feel incredibly blessed to have had so much time with my loved ones. Because I know glioblastomas tend to be 12 to 18 months yeah you know what I'm saying there at the time I was 34 I didn't realise what was going on at work I was vacant which is never a good thing when you're an assistant head and at home I wasn't there I just wasn't present for my daughter and my husband I only had the one at the time and then It was my mum, though, who booked my GP appointment because I didn't know what was going on. So she did that. And he then diagnosed me with depression, but sent me for a scan at the local hospital. However, it was me who talked the doctor out of doing that scan because I was like, I don't know why I'm here. Why are you wanting to scan my head? No, I don't need to be. So I didn't want to waste his time. And yeah, that happened. But then... My mum again came to the rescue. A week later, my husband didn't want to leave me alone with my daughter. And it was summer holidays. And so he called up my mum and said, you need to come. And she did and took me home to a local hospital in Chelmsford. And that is where they did a scan and found this massive thing on my head, in my head, which I now know is a GBM-4. This period of time was a bit hazy. I know that I had two operations. I spent weeks in hospital away from my family. I remember hearing the sounds. It was the summer and, you know, you hear all those birds singing outside because the windows were open because it was really hot in hospitals, isn't it? And, you know, laughing and thunderstorms. I love the sound of a thunderstorm. I kept thinking how long until I get back to that. Every time the physio would come and visit me, they'd work with me for a little while and then I would just be really annoying. I'd get out the bed again and I'd just be like, well, I want to move now because I've just been moving. I'd really annoy the nurses on my ward. So every time, yes, that would happen. But I do remember one particular visit. Now, children weren't allowed onto the ward I was on, quite rightly. So I was taken out to another place and... I met with my daughter, my mum brought her in, and that was lovely. When I was discharged, I was told I needed to sleep downstairs, but that was impossible. My parents were kind enough to let us move in with them, so that was fine, but we'd been looking for a new house in Essex at the time anyway, and we'd just sold our flat, so we had nowhere to live. So we just thought, we'll move in with mum and dad. And I refused to spend my life downstairs. So I taught myself to climb up the stairs. I mean, I'd had some physio in the hospital doing that, but I couldn't use the right-hand side of my body at the time. So I had to teach myself to eat because I was right-handed. I climbed the stairs again. I brushed my teeth, go to the toilet, get dressed, all of the things that you just do automatically. My eyesight was initially affected by the treatment, so I couldn't read stories to my little girl, which was heart-wrenching. The brain is the most powerful computer in the world. Having a brain tumour impacts everyone in different ways and it doesn't discriminate. Later, at an outpatient appointment, I was told that my life expectancy would be between 12 to 18 months. And I went on to have six weeks of radiotherapy and six months of tiring chemotherapy, radiotherapy, radiotherapy. chemotherapy. Well, here I am still eight and a half years later. I don't know how, I don't know why, but I don't question it. I just carry on. I just continue to live my best life. And I can see people looking at me thinking, how did you do this? I don't know. But I just got a positive attitude. And I'm sure you've all got friends and family who had a positive attitude, but I don't know why I'm still here. Anyway, It was my sister that introduced me to The Brain Tumour Charity. She looked into different charities that could support. Before I was being supported by two amazing hospices, but I decided to raise money for The Brain Tumour Charity. I decided that I would run the marathon. That was a mistake. It was because it was in 2020 that I was signed up. And so I had to do it virtually around Chelmsford, which is not great. So then I think it was Sarah Castleman or someone like that who was doing all of that at the time and so said well you can do it again then. In between that and the next marathon I had a baby unexpectedly . Bonkers child! But miraculous anyway so then I did it again in 2023 and that's the picture you can see there of my flat lay as I was told that would get more money in. But this was all before I'd even heard of the Involvement Champions. I wanted to stay involved, but I didn't want to run any more marathons. Now I look back at the last eight, nine years of my life and remember all the wonderful things we've done, like going to Australia, Canada, Croatia, and our gift of a baby, who I gave birth to in October 2021. But there's still that little niggling thought that about all the MRIs, blood tests, oncology and neurology appointments ahead of me. How many more operations, radiology visits and chemotherapy tablets I'll have to take if the tumour takes the hold again. I'll take that over the alternative though. I signed up to the IC programme last year. I do struggle and I'd love to do more, but as I'm still working full-time as a teacher, I'm a mum and I'm in a choir. Don't know why I need to add that in. There isn't much time for the Houses of Parliament visits or golf days. Don't get off work for that. I've been let off work today, though. This is a bonus. However, I have joined in meetings and treks, contributed to the new web content, reviewed many, many lay summaries, and attended most of the meetings. I also went to the London Marathon in 2024 to stand on Tower Bridge and cheer all the many runners. The highlight for me, though, was going to the Wix dinner. Last year, selling raffle tickets with my partner in crime, Ariana, because we got loads of money and we did really well. But the highlight of that was for me meeting Jeff Brazier. Yeah, I mean, that was an unexpected highlight. But I also got to have a chat with him and he shouted me out. There you go. All these things are great. Anyway, I am going to now pass over to the wonderful Mark.
Mark 17:56
Hello, everyone. Cecilia was my life partner, my best friend and my soulmate. We did a bit of looking through stuff in the loft and I found a box with lots of old letters in there. And there was a letter in there from myself and Cecilia writing to each other when we were apart at university. And Cecilia talked about us growing old together. And I always imagined that would be the case. The photo you see here on the bottom left is we used to live life to the full and we went away for our anniversary, which was the last anniversary that we ever shared in December 2022. At the end of February 2023, we went on a family holiday to Scotland, which you can... And at that point, absolutely no indication that Cecilia had a brain tumour. We came back from travels up to Scotland, and we'd been out in the garden, and this was in March 2023, and Cecilia came in, she had a tingling sensation in her left arm, in her left wrist, which we just put down to, it might be a nettle or something that she'd touched in the garden. She then went to the doctors, and GP diagnosed that she had carpal tunnel syndrome. And we kind of believed our GP and went along with that diagnosis. But then we found that it was starting to progress up her arm and eventually on the left-hand side of her body. And after we had probably one visit to A&E, another couple of visits to the doctor, and we're still being told exactly the same thing. One morning, which was, it was on 14th of April, still remember it very vividly. Cecilia woke up one morning and couldn't move. She couldn't get out of bed. And I said, enough's enough. And so I called for an ambulance and the ambulance arrived. Paramedic came in, asked lots of questions and said, have you had a scan? Cecilia said, no. We hadn't even thought of having a scan. We'd been told it was carport tunnel syndrome and that's what we went with. And he said, I'm going to take you straight to East Surrey Hospital. And he said, I'm going to insist that you don't leave this hospital without having a scan today. So we went to the hospital and after, I think Cecilia had three scans on that particular day, and then they found an abnormal growth on her brain and she was referred to St. George's Hospital. We had a little bit of wait. We had two weeks before she went up for appointment at St. George's. And so we were in limbo, not really knowing what was going on. And there was one message I remembered incredibly vividly, which hadn't been explained to us. There was one word that stood out on a message that we saw, and it said glioblastoma. We didn't know what a glioblastoma was. And of course, you start Googling. And then you start thinking, this sounds not very good. And we went to St. George's Hospital. And it was at that point that we were, well, basically Cecilia was told that she would, sorry, with treatment, she could probably live up to 18 months. Without treatment, it was going to be close to six months. And so we were booked in for a biopsy and Cecilia went in. And I can still, I remember vividly leaving our home and just thinking we were going in for a relatively safe operation to try and determine what was going to be the outcome, what treatment Cecilia would have to treat the glioblastoma. And Cecilia, I was in the car with Cecilia and the kids were at home, the kids were at the window. And I can remember watching Cecilia and she burst into tears and she waved to the children. And in hindsight, I look back on it now, I think she knew she wasn't coming back home. And that was gonna be the last time that she saw her children. We went to the hospital and she was booked in for her biopsy, which was gonna take place the day after. Unfortunately, she suffered a brain hemorrhage and I had to then call a friend for the kids to be brought up to the hospital. And I said, my friend was amazing. I said, please don't tell the kids what's happening here, I want to be able to share that because the doctor turned around and said, I had a couple of choices here today. I could try and remove the brain tumor, which we don't know what the impact would be on Cecilia, or I can make her life comfortable. And I said, what do you mean by make her life comfortable? And he said, she's got hours to live. And so it was the following morning that I eventually, lay next to Cecilia and said my last goodbyes and saw her take her last breath. And that's tough. And tough for the kids as well. And so, you know, you go on a grief journey, but one of the things that I'm incredibly positive, like the people that we've met here today, and felt like I wanted to do something to make sure that no one else could go through what we've been through. And I'd never heard of the Brain Tumour Charity because Brain Tumour has never been on my radar before. And I can remember watching BBC Breakfast and hearing the words brain tumour. The Nuttalls were on and talking about the impact on their lives. And I felt compelled to contact The Brain Tumour Charity. I spoke to Kiran on that day. And actually I didn't know, I think I was probably calling up for a bit of support. I didn't know where to turn, what to do really. And we started talking, we got talking about that, about the involvement role. And I thought, this sounds like an amazing opportunity to make a difference. And I have to say, initially, it was about bringing some meaning to Cecilia's life, but it's so much more than that. You see the people sitting here.... and when we went to the World Cancer Day event with Wes Streeting, I remember specifically at the beginning, Wes Streeting, he said, there's many reasons for optimism. And he said, cancer is no longer the death sentence it once was. And that jarred with me. And I thought, my gosh, for Cecilia, it was a death sentence. From diagnosis to her life ending, all happened in the case of four weeks. And I want to change that. And I came out of that particular session.... I've seen the people [I was with] within this group, and we have a real mix of lived experience. Individuals who've either lost someone, like myself, those who live with someone who has a brain tumour, and those who have survived a brain tumour. And that's the hope for me. That's what keeps me going - knowing that there are individuals who can get through this. We can make a difference and the brain tumour charity can make a difference and I want to be a part of that. The brain tumour charity is now part of my life it's part of my existence it's it's it's who i am now.
We've represented the brain tumour charity community and we spent the last 18 months using our lived experience to help play an active role in helping the future direction of the charity You mentioned last Friday the Rare Cancers Bill passed its second reading in Parliament, which to me is evidence that change can happen and that our involvement will help shape a better future for those diagnosed with brain tumours. I've got two proudest moments. One is my two children, who are incredible and have been a huge support for me, way more resilient than I am. And they are incredible. And they're just like their mother. But actually, one of the last April, I raised 11,000 pounds for the brain tumor charity. I did a walk from Leicester, where I met Cecilia, to Bolton, where she was from. And we finished the walk at Bolton Wanderers Stadium. Cecilia's dad is a Bolton Wanderers fan. I support Reading Football Club. And Bolton were playing Reading on that day. And the team chef at Bolton Wanderers, his daughter had been diagnosed with a brain tumour, I think the year before, and I think was OK. And so the community team had reached out to Bolton Wanderers and they were very keen for me to come along and do something. And I had the opportunity. I call it opportunity, didn't I? It was quite, it was frightening. At half time, they allowed me to go onto the pitch. and to speak in front of 25,000 fans. And the guy who announced me announced me as a Reading fan. Why? Why? And I spoke about my story and announced the fact that I had a fundraising page. And for anyone who's familiar with JustGiving, every time a donation comes through, you hear a ping. And I'd gone on at halftime. and spoken about Cecilia and my story and went back up to, I'm going to say, enjoy the game. We lost 5-2. We were hammered. And I could hear my phone constantly pinging. And these are complete strangers in the crowd who were donating. And on their messages were saying how moved they were. And one guy turned around and said, I'd normally have a pie and a pint. I'm going to give my pie and pint money to you and to the brain tumor charity. And it just shows you that we can have a real impact and a real influence. And I just wanted to say thank you very much to you as an organisation for enabling us and giving us a voice and enabling us to be heard as individuals. It's incredibly powerful. And I know that we've all come through. We're here for different reasons, for different journeys. But we've come together as a group and it feels very much a community. So thank you. And thank you for listening.
Thank you to all of you.
Anna 28:34
Wow! That was four very different experiences that we just listened to. Obviously, a mix of people who've had lived experiences with brain tumours and those who've been affected by loved ones' personal diagnosis. But one thing that really struck me was that they all spoke so eloquently about their situations and really felt grateful for the opportunity to be heard. Rachel, welcome to the podcast. How does it make you feel to hear from the four involvement champions in that way?
Rachel 29:01
Hello, Anna. Do you know I think it's just really moving to hear people speaking so openly about things that actually we don't often hear people talking about these moments that are so difficult in their lives and I think it shows how powerful it is to be listened to and when we make space for voices to be heard that actually people do want to share. I think it It reminds me why the work we do, the involvement work we do matters so much. And it's about real people and the connections that they make with one another. And it makes me feel really proud of the community that we're building.
Anna 29:39
Definitely. Absolutely. I think pride is a key emotion there. Could you tell us how many involvement champions there are and what their role is exactly?
Rachel 29:50
Yes. We've got around 20 involvement champions. It's a two year programme and it's quite a varied role. But essentially, it's about giving people a platform to share their lived experience to shape the work we do as a charity. So they're involved in co-production and feeding back on strategy and project design. And they're involved in events and working with researchers and policymakers. We meet with them monthly for opportunities to feed in, but also development opportunities and peer support opportunities. And just to flag that the Involvement Champion programme is one of three involvement programmes we run. One is the Young Ambassador programme, which Anna, I know you know a lot about. And the second is our Involvement Network, which is a much wider group of people who we communicate with via email.
Anna 30:49
Amazing. Sounds like there's loads of opportunities for the Involvement Champions to take part in. Are there any recent highlights, anything that they've been getting up to recently that you can share with us?
Rachel 31:01
Gosh! There's so many. It's been a really busy start to 2025. Just last night, some of our involvement champions and involvement network members came together for a community insight workshop, which was led by a researcher who's using AI to help speed up diagnosis of gliomas. So they came to a session led by this researcher where they reflected on their own experience of diagnosis and pulled out what some of the barriers were and what could have been improved. And that's going to feed directly into some of the plans that he makes to make sure it's very patient centred. So that was just last night and that was really moving but very powerful I think particularly with the research involvement pieces there's that feeling of hope that people get that there could be change for future generations so that was really an amazing evening. They were at Westminster and the Senedd and Holyrood talking to politicians and policy makers about the need for a national brain tumour strategy which our policy team is working hard to advocate for. And then just another quick highlight, which was a recent one, our involvement champions met with some of our support team to make sure that the information, when people answer the phone on the support line, they often give information about hospitals, but actually people who are going through experiences might need information that we don't necessarily have at our fingertips about the hospitals and facilities around them. And so the involvement champions have fed into a project where we make sure that we have all this information that our team might not have thought of, but people with lived experience really have, to make sure that we offer people really good information and support when they call in. So yeah. been very impressed by their passion and insight and I think there's just a real feeling that people want to contribute at the moment which is great.
Anna 32:60
Yeah wow such a varied range of opportunities there but they all sound equally as important. How do people find out about future opportunities to get involved in?
Rachel 33:11
We meet once a month and we sort of highlight upcoming opportunities then but we also use like a volunteering app platform so people have an app on their phone called volunteer and all of these opportunities as they come in are put up on there and people can decide if they want to take part and so yeah people can be sometimes people have a bit of a clearer month in their work diaries and do lots of involvement and then things will get busy again and so they will take up fewer opportunities so it's really flex around the needs of each individual and it's the same with people with caring responsibilities too so we're really mindful that people have got full lives and they participate in a way that works for them
Anna 33:55
Yeah that's amazing. So it's not a really pressurised time commitment role it's just as be as involved or as not involved as it suits you?
Rachel
Yeah
Anna 34:08
That's really great. How can people sign up to be a part of the Involvement Network if it's something that they're interested in?
Rachel 34:15
So it's really easy.. We have a form on the website, which we can send to you, Anna, actually, to include in the notes. And people just can share a bit of information about themselves. And then when you join our network you'll be part of our mailing list that goes out once a month. We've got a big group of around 1,000 people on this list. And we share lots and lots of opportunities. So we'll also be sharing to that group then when the next cohort of involvement champions are recruited, if people are interested in that role too.
Anna 34:44
And when will that be? How long have the current involvement champions been involvement champions? And when would you start recruiting for the next cohort?
Rachel 34:54
Our current champions have got about six months left on the programme. So we're going to be opening for recruitment at the end of autumn this year.
Anna 35:01
Amazing. Sounds good. Really exciting for anyone listening who it sounds appealing to them. Do you get a range of different people from different demographics signing up to be involvement champions?
Rachel 35:14
Yeah, and that's something that's really important to us that the people who are doing this amazing involvement work are truly representative of the community that we serve here at the Brain Tumour Charity. And so we're doing a few pieces of work at the moment to really think about how we can ensure that The voices that are sometimes underrepresented and underserved sort of have a platform. And one project that the involvement team here are running, and I thought it'd be great to highlight, is we're running a project called the Brain Tumor Charity Listening Project, which is a project that recognises that there are certain people that we don't, always hear from and so we're directly reaching out so for the purpose of this project we're gonna we're interested in speaking to people who are from minoritized ethnic groups and we know that people have different experiences of navigating a healthcare setting and um have distinct challenges and what we want to make sure is that we're hearing what they are and making sure that our services meet those needs that we're also really interested in hearing from people from low income backgrounds, because we know that there are distinct challenges again for that group. And finally, we'd like to hear from carers of people with a high-grade tumour. And that's about their needs rather than the needs of the person they're caring for. Because again, this is a group that are often underserved. And so what we're doing with our listening project is reaching out directly to these groups and asking them to come as individuals to have a chat with us about their experiences. And what we'll do based on these conversations is see if we can identify any themes or any things that sort of link people's experiences together so we can learn from them and we will be feeding that into a strategy for our support and services so it will directly impact the support that we're able to give so we've got information on our website about how to sign up for one of these conversations but we're really really keen to hear from people and can be super flexible around people's needs as to when that could happen so yeah that's just what we wanted to talk about today because we're really excited to be working working in this different way
Anna 37:31
That sounds like an amazing project what would you say to someone who's listening and they fall into one of those demographics and they're thinking that that sounds like me but they're a bit apprehensive about reaching out or getting involved what would you what would you say to them?
Rachel 37:47
I would say if you've got any questions or you think Yeah, that could be me, but I'm not sure if I'd like to have a formal interview or... I would really strongly recommend you drop us an email. So that's involvement@thebraintumourcharity.org. And we can just set up an informal conversation so you can get to know us. We can tell you a little bit more about the project and you can... decide then if you'd like to participate. We've also got, while we're talking about involvement champions, a couple of our involvement champions are community partners on the Listing Project. So they're from these demographics and working with us to make sure that we're working in a really sensitive way. And so actually if people want to have a chat with our community partners before to find out a little bit more and to build that relationship with us, we can organise that too.
Anna 38:40
Yeah, that's amazing. Well, like you said, we'll be sure to pop all of that information in the show notes so that people know where to go. Finally, just a little bit more about you. How are you finding your role at the charity and what's next for you and your team?
Rachel 38:56
I absolutely love it. So I'm just six months in actually, Anna, so I'm fairly new. And I feel really, really lucky to have joined an organisation that that clearly has been championing involving the community in a meaningful way for a really long time. So it's a real privilege really to step into an organisation where culturally there's a commitment to this really important work. I work with a lovely team, so Abby and Kiran, who lead on the Involvement Champion and the Young Ambassador programmes. And they're really driven and creative and committed to making sure that all the involvement we do is truly meaningful. What we don't want to do at any point is make this a tick box exercise. So we're constantly refining the way we work and working with the community to think about how we can develop more creative and meaningful ways to engage. We're very ambitious. I think over the next 12 months, we really want to grow our network. We'll be recruiting our new cohort of involvement champions, and we're really keen to make sure that that group is truly representative of our community. So building relationships with different grassroots groups and community groups will be really important for us. And whilst there's been some lovely involvement that's happened, we're just getting started. We're really ambitious. We want to see... research involvement become more accessible for people and we want people to have you know real power sharing decision making opportunities so yeah watch this space.
Anna 40:31
Yes we absolutely will be. Well it's been an absolute pleasure talking to you today Rachel and thank you so much for coming on the podcast um is there anything else you'd like to say um before we sign off?
Rachel
One thing, Anna, I was going to turn the tables a bit because I know you were a young ambassador so you've had a taste of the involvement programmes at The Brain Tumour Charity. I wondered if you could share with us some of your reflections about how that role impacted your life and yeah, it would be great to hear about your experience
Anna 41:06
Yes, absolutely. I can. Yes. So I was a young ambassador from 2021 to 2023. And I found the whole experience amazing. It was just so nice to meet a group of people who have all gone through different personal experiences together. with brain tumours, but obviously they're all connected in a really unique way. And I think it was such a special opportunity to form bonds with people who get that. I think you can have your personal network, your friends, your family, but you don't always necessarily have people who really get it as much as those friends that you make on the young ambassador scheme do. And I'm sure the rest of the involvement network and the involvement champions are very similar. And in that kind of bonds that they form. So that was one thing that I found absolutely amazing about the experience. And yeah, I've obviously stayed on connected to the charity. I think, like you said, it really makes you passionate. And when you are open to all of those opportunities, like I was as a young ambassador or like involvement champions are, you get that fire in your belly a little bit and you kind of you realise well what's next what opportunities are available to me just because that scheme's ended doesn't by any means mean that you um stop being a part of make trying to make a change so um yeah I found it amazing and I think it's um it's great that there's different levels of involved of how people can be involved whether it is the ambassador scheme or um a different way of being involved so thank you so much for share um sharing the different ways because I I wasn't sure about the involvement champions and now now I know so So it's great.
Rachel 42:49
Amazing. Thank you so much, Anna.
Thank you.