Let's Talk About Brain Tumours

Episode 36 - Spotlight on Involvement Champions

• The Brain Tumour Charity • Episode 36

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In this episode, Neil Munn and Donald Innes talk about their time as Involvement Champions for the charity.  They share what being an Involvement Champion means, not just in terms of their role and what they have done as Involvement Champions but also what it has meant to them personally and the feeling that they have had a real say in the direction the charity is going in and seeing the work they have been doing have real, tangible results.

If you would like to find out more about our Involvement Network or would like to become an Involvement Champion you can find out more here 

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Sarah:

Welcome to Let's Talk about brain tumours, the podcast where we'll be talking to people who have been affected by brain tumour diagnosis, either their own diagnosis or the diagnosis of a loved one. We'll also be sharing news and updates and brain tumour charity about what we're doing to have the harm and double survival. Welcome to this spotlight episode. Today, we're going to be talking to Neil and Donald about their experiences as involvement champions. So welcome to the podcast.

Donald:

Thank you very much.

Neil:

Thank you. Good morning.

Sarah:

And as you know, Andy is also an involvement champion. So I'm going to hand it over to Andy to give his introduction as to what the involvement network is and what involvement champions are.

Andy:

Thanks, Sarah Hello, everyone. Hello, Donald and Neil. I'm also an Involvement champion. So this role was created by the charity, sort of May, June 2020. So we're about 18 months through a two year cycle. So it's sort of three quarters of the way through it now. And the idea was, for the charity to have a set of people to call on that have got a real passion to improve the world of the brain tumours, and what the charity does. So we've all got some connection to brain tumours, whether it's personal experience, or loved ones that we care for, or have lost, and we all want to help the charity. So the charity effectively allows us is involved in champions to get involved in virtually everything that the charity is doing. The idea being that we're, we're cheap, because we're generally free labour because we have volunteers. But also it means that virtually all the decisions that the charity takes, right from the strategy down to what material he puts on his website has got some influence from someone with a, with a knowledge or experience of being impacted by a brain tumour. So the idea is that it keeps it keeps it real, keeps it useful, in hopes, hopefully make sure all the information is is actually useful to other people that are affected. I'd like to hand over now to new or dawn, whichever way you want to go. Introduce yourself first, and then a little bit about why you joined the network.

Neil:

So Hi, I'm Neil Munn, I live in North Essex. I am one of

Andy:

Do you know what type of brain tumour you have? the fortunate 12%, who have managed to survive a brain tumour diagnosis for longer than five years. So I'm at t plus nine, I guess, why did I want to join as an involvement champion? So I think it probably goes back to the sort of what's my starting point, which is, the scientists and the medics will tell you that, you know, there are hundreds and 1000s of different types of tumours. But from a lay person's perspective, I always think there's only one type of tumour, and that's devastating. So anyone who has been in this situation, it's extremely difficult to convey just how traumatic and how challenging being in that situation can be. And so lots of people have good experiences, but probably more people have less good experiences. And my particular case, you know, didn't start very well. And so when I discovered the brain tumour charity, it seemed to me that it was a good opportunity

Neil:

So I had a great one meningioma. to find a way to turn something quite terrible, into hopefully something positive, in order to try and help all those other people who unfortunately will end up with one of these to have a better experience than I did. And so I've done some sort of work with a charity on the step by step guide. And then I saw the involvement champion role advertised and thought I'd apply. Fortunately, I was selected to be one. So that's how I became an involvement champion.

Sarah:

And what about you, Donald?

Donald:

Oh, hi, my name is Donald Innes. I live close to Edinburgh I'm in the Scottish Borders. My stories is sort of long. I was diagnosed at grade two oligodendroglioma 17 years ago. So I'm one of the fortunate ones who has survived. Way passed the time I should have done really so I'm sort of lucky I have had two awake craniotomies and chemoand radio along the way so it's, it's not been an easy journey. The first seven or eight years I sort of muddle along myself, and I was lucky enough to bump into a couple of chaps who were collecting for the brain tumour charity at the shopping centre. And that's the first time I knew about the charity really so. So I got in touch and I, you know, I wanted to do something and give back so I started off first off as a BRIAN champion, and really enjoyed that being able to put something back into the community. So I was doing that and then, like, Neil, I saw the involvement champion role advertised, and again, put my name forward and was lucky enough to be accepted as well. And it's just been fantastic since then

Sarah:

Amazing? What sort of things have you done as far as involvement champions? Because it sounds like it's been quite important to both of you, because of your lived experience, have you been able to use your lived experience to do things that are important to you as an involvement champion?

Donald:

Yeah, I think so I am, I come from a science background. And so I've been able to work with some of the different groups. I've been working with the research group doing some work in that I have time on my hands, because I'm semi retired. So I tend to volunteer for most things. So. So I've done a number of things as I think Neil and Andy have both done as well. So, I mean, tonight, I've got a meeting with gifts and wills, which is basically legacy giving, you know, to help with that. But yeah, I've done a number of things. So anything that comes I tend to jump in and volunteer for it,

Sarah:

is there any standout thing that you can think of that you've done that for you is top of the list of really important things that you wanted to be involved in.

Donald:

I think because being part of the actual involvement, and champions, we all had the opportunity to work on the new strategy. And that's really been a highlight for me to be able to put in my sort of lived experience into that along with, I think it's 40 odd people doing that. So it's just been fantastic to be able to do that.

Sarah:

It's been a highlight for us, as well as that work out the charity, having so many of you willing to give your time and experience to do something like the strategy because that really shapes the direction that we're moving in as a charity and what we're focusing on.

Neil:

So I think, I think the big thing about that is how open the charity has been, and how willing is to allow the whole involvement community if you like, to help shape the future in the thinking. And it's not just the strategy, I mean, you know, we we also get a voice in terms of campaigns and what the website looks like, and looking at the research proposals and commenting on those, and we, you know, we come along to staff days, and all sorts of different things, you know, that really, it really is a very mature kind of way of operating as an organisation. You know, there's plenty of organisations that say that they, you know, listen to their customers, or they talk to their members, and they, you know, bear those in mind, but I've never come across an organisation it's been as willing to open itself to the thoughts and ideas from, from external voices. And I think it's, you know, it's, it's, it's one of the most interesting aspects of the champion role that you really get to see kind of under the hood, if you like, of how the organisation works, and how you can help, you know, so it's, it's, it's a role, which is never dull, that's for sure. You know, there are lots and lots of opportunities to be involved, hence the name because, you know, it's sort of, it's what you make of it,

Sarah:

it was quite scary for us. I think, as an organisation, like you said, very few organisations do it, it was quite a big step for us to open up to the community, because we weren't sure, you know, we you always think you're doing what the community wants, but then this was the real test of, are we? And are we going to be shifting in directions that we weren't expecting to and can we? You know, can we make those shifts? And actually, it's been much easier to do than we probably thought it was, I feel much more invested in this strategy than any other strategy. We've had

Neil:

So Donald mentioned, the cocreation strategy, which has been absolutely phenomenal, but part part of that work was there was a workshop that we held in North London a few months ago. And that brought together What about 40 or 50, or maybe it was more people from all parts of the community. And if you were fortunate enough to be one of the people who participated in that day, you would have felt the energy and the drive and the passion and the commitment to improve almost every aspect of what it's like to deal or live with brain tumours. And that's, you know, that was so such a powerful day in my memory anyway. And we couldn't do that unless the charity was willing to open itself up to that type of approach

Donald:

Exactly, and I think it was all inclusive because of the way that they included other charities and so it's it's total inclusion and how has to be that way, because everybody's striving towards the one aim. And that's to get a cure for Brain tumours It's, it's fantastic.

Neil:

Yeah,

Andy:

because I was on my table at that event I was sitting next to the, I think was the finance director of one of the other main charities in the UK. Who was there as a participant, just like everyone else was. And it was quite humbling to see senior people from other charities mucking in for the better phrase with, with all of us as well, it was, it was, as Neil said, the energy in the room was phenomenal.

Neil:

I mean, we had, we had all sorts of counterparts, if you'd like some of the young ambassadors, who I think you've done a podcast with in the past as well. They were there as well. And, you know, goodness, they have such an energy about them. And, you know, hopefully, they're the next generation of involvement champions at some point. So it's very encouraging to see and hear that passion. And and that interest in, you know, shaping the future, shaping hopefully, a better future for everyone.

Sarah:

And what are the sort of benefits? Would you say that you've got, personally from being an involvement champion? Because you've talked a lot about what that what we get out of it for my charity for having you involved, you know, involved, but what do you get personally from it? What's the benefit for you?

Neil:

I think it's a privilege, to be honest, I mean, there's 1300 plus people in the involvement network, I think, for the charity. And so, you know, we are the champions, I guess we sort of act as a bit of a voice, representing that community, and helping helping to shape all the all those products and services and campaigns and ideas and support and whatever it is that research as well, obviously, you know, I think having that is quite a responsibility, but it's also absolutely an honour and a privilege to be able to be able to do it. And the I mean, the other side of it is to get to know the staff and how and the charity in that much more detail. And, you know, it's really, really, I mean, I've never been that close to a charity prior to doing this. So it's been very interesting. I was working in sort of corporate sector. So it's been a real eye opener, and really informative to me to see how the organisation conducts itself operates, how successful it is a breadth of what it tries to do. It's just like, wow, okay, all right, we'll do something easy, like peace in the Middle East next.

Donald:

It's weird that it's all inclusive. And, you know, no matter what we come up with, as, as a bunch of people, the, the charity just embraces that, and lets us run with certain things. I know that some of the members of the involvement, grouper are actually coming up with ideas that the charity didn't even think about, like rehabilitation, which is just fantastic. You know, and, and the charities seen that as a positive. And basically, the involvement champions run with it. So it's just, it's just phenomenal. And, Neil, as Neil said, it's just, it's just a privilege to be able to do that, to be able to interact with the staff, and the wider community as well.

Neil:

I think I mean, the other thing is to meet the other champions, it's been absolutely fantastic to get to know them better. And we were able to, some of us have managed to meet each other on a couple of occasions. And that makes a world of difference to actually, you know, see each other face to face rather than just through zoom. And I mean, you know, all the, all the stories are both, you know, they, they obviously have a degree of upset related to them, but they're all incredibly inspirational people because they're so resilient. And if I think about the whole community, you know, resilience is one of the key things that is a sort of common common throughout the DNA of our community, you know, often often in the face of extraordinary difficulties and challenges. And yet, you know, still determined to be positive, still determined to carry on live the best life, they can give back as much as they possibly can do.

Andy:

Just one more on that is absolutely what the guy said. But also, we've had some fun along the way. I think, not going to have a sad life with my two favourite days this year was one was the one in London, where we just all got together as a whole community. And the other one was when the involvement champions got together last month, I think in the offices of the charity, and it was such a brilliant day because the charity has actually opened up virtually every department about what it does and how we can help. And it did, it just felt like a privilege. And there was another time I think when Neil and I both briefed, I forget which team it was. No, but that was it turned out they got some interesting feedback.

Neil:

We did get some interesting feedback. I think they're due out of kind of counselling soon from that. They certainly won't forget us thats for sure.

Andy:

Yeah, that's for sure.

Sarah:

But I think having you guys is well involved. Speaking personally, I am a support worker, I work on the support line. So I come into contact with people who have been affected by brain tumours all the time is part of my day job. But there are other aspects of the charity where they don't have that because their roles are very different. And it really helps them to do their job and really understand aspects of their job and how to do it better when they get to meet actual people who have had this experience, because that then fuels what they do, it kind of gives them the kind of like, Oh, I see, now I've got a new direction to go. Because it's quite difficult if you've never had met anyone with a brain tumour or anybody who's been affected by to really fully grasp what it's actually like,

Donald:

we've had the chance, I mean, I, I was lucky enough to sit in one of the staff champion meetings, it was so good, because every group is represented there. And they all wanted to be involved with involvement champions. And that, that just like me, sitting there, no low level and zoom. It just gave me such a warm feeling that they appreciated what we were doing, as much as we appreciate what they're doing. For us. It's just phenomenal.

Neil:

I guess it's I mean, it's a new, it's a new venture in a champion, role didn't exist it until we're the first cohort that that manifestation if you like. So, you know, I guess it's, I guess it's taken a bit of time to start from zero and see, you know, where, where we can help and where we can offer thoughts and advice and opinion. And so I think, you know, different teams have sort of latched on to that, sooner or later, depending on what they're what they're working on, or have their own experiences, or what they've heard from others. So, you know, I mean, it doesn't seem to ever be a time where people aren't asking for our thoughts or advice.

Sarah:

And I think that will just get more and more and more, as you know, like you said, this was a new thing. And I think that it's now become an embedded part of what we do as a charity. So I think this will continue to take a bigger and bigger role in what we do. So with that said, if there's somebody listening to this, who's thinking, you know, what, this would be something that I'm quite interested in, you know, what would you say to somebody who's sort of sitting on that fence saying, I don't know, I don't know, if I've got time to do that, or, I don't know, if I've got anything to offer? What would I you know, I'm not very good at anything, or, because I no confidence goes when you've had a brain tumour, and maybe you've had to give at work and whatever, and you just think you've got nothing to offer,

Donald:

I would I would say it's just go for jumping, we weren't sure what it was going to be. But I think you'll just find it sort of warm. And because you'll be working with passionate people who know what you're going through, because I think all that the charity are very aware of, and what's happening with with people with brain tumours, obviously. So yeah, they understand where you are your loved ones that are going through, so it'll be totally supported. And, as we've talked about, you'll get to know the workings of the charity and, and get a better perspective of it.

Neil:

Echo all of that. I mean, you know, the role, the roll, the roll description itself doesn't dictate how much time you have to commit as far as I can remember, I mean, we obviously have a monthly sort of catch up. So you know, there's a, there's a sort of expectation that you try to attend as many of those as you can, of course, but really, it's a case of all the people in our in our group, do as much as they can, depending on their own individual circumstances. And the charity is completely appreciative of whether you spend, you know, several hours, or whether you've got a relatively short amount of time, it doesn't really matter, I don't think, I mean, we, we've, I think I made a conscious effort as a group to make sure that no request has ever not had some kind of answer from at least one of us. And so, you know, I think that's quite important, as you know, to be responsive as part of a part of this role. I mean, it's, uh, I think I've said already, you know, it is a privilege to be asked to, to participate like this. And I agree with what we've done on you know, if you get the chance, absolutely go for it. It doesn't matter if you think you don't have any particular technical skills. First and foremost, it's your experience. That is the most important aspect of the role. And you know, how you can bring that experience to bear to make a difference. For others. That's that's watts, to me seems to be the the key part of it.

Sarah:

Absolutely. How about you, Andy?

Andy:

Yeah, getting what the guys are saying it's initially, I think some of us felt we should be doing more, because a lot of requests came across the bowels of the ship service between you think, oh, I should be doing. But it's very quickly became obvious, as Neil said that there was about 15 of us. So there's, there's always someone there willing to take, take an interest and help out. So if you can only commit half an hour a week, that's absolutely fine. And if you want to pick and choose the things that you like, that you resonate with, you can also do that as well. So there's no pressure, you've got to do somebody, literally, it's your choice. And as I've never once had anyone say, could you do that, please? It's always like, Would you be able to do that? And like Neil said, and Don is a really good close knit group now. And I felt hoping that will continue. So yeah, just just if you are lacking confidence, and I think we've all been there, you know, quite a few of us have retired, there's about, I think there's about half and half split between male and female on the group as well. And quite a few of us have sort of retired early through health reasons. And you think, you know, I can do that with, with the symptoms that are ongoing. And absolutely you can, you can veer and haul as much as you like. So just just get involved. Try it. And I think we've all been pleasantly surprised how much we've been able to give an offer to the charity.

Neil:

Definitely. Yeah. You know, one of the best things I've done in recent years without, without question,

Sarah:

so good to hear that so good from our perspective to because it's been such a benefit to us. And, you know, I think it's changed everything for us as a charity about how we move forward and the things we focus on the direction that we're going in. And that's something that we're going to continue doing.

Neil:

So I think one thing we should definitely say is that, you know, the involvement network itself would not be as successful as it's been without the two people who run it. So Jen and Shannon, have done a phenomenal job. And so, you know, without them sort of helping to manage it day to day guiders. You know, we wouldn't, we couldn't do the things that we do without without them. So you know, they have been absolutely critical to successfully.

Sarah:

If anyone is interested in this into this now interested, I will put the contact details, so you can contact the team. And I'll also put a link to a page on our website that has more information. So if you just want to read a little bit more, you'll be able to get hold of Jen and Shannon via the email link below that are stick in the show notes. Now, I think we've covered just about everything. Is there anything that you'd like to add finally that you'd like? Oh, I haven't said that. And I really want to say that.

Donald:

Not sure I can't remember what I've said to be honest.

Sarah:

It's been amazing. It's been really, really good.

Neil:

You'll have to listen to the podcast.

Sarah:

It's been great. So I'm just gonna end by saying, thank you guys so much for taking the time out to talk to us today. And for all your work on the involvement network. And as involvement champions, we wouldn't be where we are in a strong position we are as charity with some of the things we're working on, without people like you giving us your time, and your energy and your enthusiasm and passion.

Andy:

Cheers guys.

Donald:

Thank you.

Neil:

Thank you.

Sarah:

We hope you've enjoyed today's episode. Don't forget to subscribe to the podcast so you'll never miss an episode. If you'd like more information, you can visit our website at brain tumour charity.org or email our support team at support at the brain tumour charity.org And finally, before you go if you enjoyed this podcast, please can you leave us a review on iTunes wherever you get your podcasts so we can reach more people and raise more awareness