Let's Talk About Brain Tumours

Episode 21 - Spotlight on Strategy Update - Beyond Brain Tumours

• Episode 21

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In this episode, Chandos talks to Andy about his involvement with the new strategy the charity is co-creating with the community.  Andy is a volunteer that not only works on the podcast but is also part of the Steering group made up of members of the community, The Brain Tumour Charity and other organisations that are working to improve the treatment and care of people diagnosed with a brain tumour.

Andy explains more about this process and what the new strategy aims to do.

You can find out more about the new strategy here  and also ways you can get invovled here

You can also contact the Involvement Team by email involvement@thebraintumourcharity.org

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If you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org

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 love and we'll also be sharing news and updates from the brain tumour charity about what we're doing to halve the harm and double survival

Chandos:

Hi, everyone and welcome back to Spotlight series of the brain tumour charity podcast. I'm your host Chandy. In this week's episode I speak to Andy, who's part of the steering group that's forming the new strategy for the brain tumour charity, we'll be talking about how you can get involved and how the charity is working with others to help form a collaborative approach to ending the harm that brain tumours have. Thanks, Andy, for joining me today. Can you tell us a bit about yourself for those who don't know who you are already?

Andy:

Yeah, morning, Chandos morning, everyone. I'm Andy Tudor I'm a volunteer for the brain tumour charity, and an involvement champion, as well, one of the sort of 20 out of those in my two year post. The reason I got involved with the charity bluntly is because I had a brain tumour myself five years ago, it was removed surgically discovered at the last minute, so that's an interesting, that's another story to tell you about,hat was fun or not removed, athe time, they said it was successfully removed. So I've had series of you know annual MRIs. And everything's been fine. So about 18 months ago, I retired from work and I had more time on my hands. And one of the things I wanted to do was support the charity because a charity really supported me when I needed some help back five years ago, and there wasn't a lot of help offered to me. In fact, none to be honest. So the charity were brilliant, really helped me out in a difficult time and my family. So I wanted to give something back so that's why I got involved as a volunteer and then an involvement champion and involved in these podcasts. For me unfortunately, in January this year, I had some regrowth. So after four years of nothing, my what was left, apparently my brain tumour decided that it wanted to grow again, bless it. So I'm now experienced in stereotactic radiosurgery, which is the gamma knife sort of treatment, which is far more pleasant than surgery. And I'm now in the middle of waiting for my next scan, hopefully to show that that's all worked. So I'm kind of having thought I was a survivor for want of a better phrase and got over it. I'm now living the process again. But I'm kind of I'm ticking the treatment boxes should we say as we go along. So hopefully I can add a bit more to you know, when when when I've talked to people and people asking about things like now I've got even broader range of experiences.

Chandos:

And what does your volunteering role look like within the charity? What sort of things are you involved with? And do you get up to?

Andy:

I'm quite curious. So I tend to get involved in quite a lot of things. So my main task when I joined, and what I still do is a peer support, volunteer. So what that means is there are some closed Facebook groups for the charity, which are only open to people who it's appropriate part of the group so they can have confidential discussions with like minded, excuse the pun people and people going through similar experiences in a safe environment. And they're really, really supportive. That's what helped me out when I was when I didn't have any information. I join those groups, literally in about a couple of days of being treated, and it was superb. So part of that role is I can remotely want a better phrase vet people. So people apply to join the groups. Most of the people, it's absolutely fine. But you do get one or two people who come across some by accident that you really don;t want to be part of them. So all joining for other means. So we try and make sure that everyone in the group, it's appropriate. So I'll go on couple of times a week, spend a few hours just going through the people that have applied to join, not all the Facebook groups, I look after sort of the main one and the carers ones, we did the two biggest ones, and just check that they're appropriate. And then let them join and then send them a message welcoming message saying please come on board. So that's, that's the bulk of what I do. So that's about four or five hours a week. Then again, because I'm curious, I got involved when the opportunity to be an involvement champion came up, which is about a year ago scarily I got involved in that. And that allows me to get more awareness and involvement of other projects that are going on. So through that I've helped review some of the websites update some of the documents that have been published. I've taken part in several discussions. We have a monthly get together in that about what we want to do as a group, updating information, providing other support I've been involved in I had a previous podcast back in November last year with you guys. And then I got involved through the involvement champion in the in the steering group, because the opportunity came along to help shape and create the strategy for the next five years for the charity. And for someone like myself, that would be an amazing thing to be involved with and to see through, because I don't like using the term legacy loosely because it suggests I'm not going to be around very long. I hope that's not the case. But if I can get involved, and even the small piece of the jigsaw for, for for, you know, updating the strategy for the biggest brain tumour charity in the world, that that, Wow, that's some legacy. And something to say, Yeah, I'm proud of that. And also to make sure, hopefully, the strategies in going in the right direction and is going to do what, what I hope it can do. I've also been involved in, there was a briefing last year to one of the MPs who's had a brain tumour. And that was a sort of a session just to talk about brain tumours and the impacts on life, and so on and so forth. But that was a really interesting discussion as well. So being a volunteer I've kind of been getting involved in quite a few things.

Chandos:

And those who are listening today, to this episode will know from the last episode, we when we spoke to Alex, the new CEO, that the charities changing the way it approaches, treating like helping people with brain tumours, live well and to look beyond diagnosis. So what what's your involvement look like? How does the charity value your opinion?

Andy:

That's good question. So the steering group itself, I was kind of part of the discussions that helped shape the setting up of the steering group and the overall approach. So there were various zoom calls about how we want to approach setting up the strategy. And Alex was right, and what what we're doing in terms of this, the approach scenarios is called co creation. As part of my role on the steering group, we meet once a month, via zoom call, that that brings together that steering group. And that is, that's kind of almost like the hand on the tiller, just to make sure we're going in the right direction, we're including the right information where we're considering all the various information and views and opinions that we should do. So for me, personally, I've been able to shape that whole approach. And then during those discussions, and we often have breakout sessions, and so on, and so forth, I've been able to impart my experiences, and my knowledge as well. So another thing I've been able to do is, recently, the charity have had a couple of opinion polls or surveys, that's right, with surveys about what people want out of the strategy and also about their experiences. So I've made sure I've been using those to voice my, my views. And those have been definitely taking consideration of, I think we've had over 800 responses to our recent survey, which is, which is a great response. So, you know, I'm one 800 of that, but that's fine, I it's involved. And also, for me personally, there were certain workshops on four of the main areas that the shattered the charity was, was sort of focusing on as a result of the surveys, which is improving research, improving the support, as Alex said, that we give to people pre and post treatment, and also for their for their carers and their families. And also, early diagnosis. So in terms of adults, we've had great success with children, this is about early diagnosis with adults. So by being involved in those workshops, again, Zoom calls, but there are workshops, I've been able to get my views across and help, you know, hopefully elicit the responses from other people as well facilitate for want of a better word. And then another one we're doing in July, we're having a our first face to face major session in London, where we're going to get the main people who can make it from the steering group. And that's where we're going to look at them. And I'll talk about the stages and that's where we can begin to look at right, what do we know, what have we learned? What what are the key areas that we think are sort of areas of need, should we say for for the strategy to address and get into a room and say right what if, what can we do? What could we do? What's sort of are possible? So that we make sure we're we're sort of spreading that as wide as possible on potential solutions and how we're then going to define and hone in on the strategy. So I'm well chuffed for the better ways the charity for myself and the other involvement champions. People that have lived the experience are really having a major impact on the strategy which I think is which is fantastic.

Chandos:

And whereabouts are we in the planning stage of, of the new strategy?

Andy:

Yeah. So where we are at the moment is, effectively, we're in the gathering stage. So it's the mapping the need stage. So through various surveys that we've done, and talking to the other charities and other people in the sector, that we're now looking to looking at all this, sorrry what I should say so before that was, the very first one was effectively gathering together. So it's important to know in my view that with the co creation of the strategy, this is the first time I've been in industry 30 years, and I've never seen this before, where genuinely, we are co creating the strategy. Alex, the CEO in the very first steering group, right at the front, he used the term surrendering certainty. So the charity has surrendered the certainty of the strategy, they don't know what the strategy will be, which is quite a leap of faith for the CEO and the leadership. But they are very much on board. And when we talk about the steering group, if I just mentioned, we've got included in the steering group, in the meeting we had last week had over 20 people involved. So the three biggest charities in the UK, very much front and centre, we had input from the Tessa Jowell brain cancer mission. So that's another really good source of information about sharing and levelling up of good practice. For example, we've got the head of Headsmart, involved, so as well as some eminent neurosurgeons and leaders in their fields. So when when we say we're co creating it genuinely is co creating the key people involved in the charity sector, certainly within within the UK and in America, as well as the mix of people like myrself who are living and breathing it. So that team has brought together we've had three steering group meetings now, which is great, because they're all, you know, an hour is never long enough. But it's great to hear the different views and different opinions and just marvel at the people involved in the steering group so come back to your question. We're now in the stage of mapping the needs. So I think we've said in the last meeting that over 1000, people have actually been involved in mapping the need through surveys, through workshops, through just being part of, you know, adding their views in any way they can. So over 1000 people, we've had over 1000 survey results for our sorry, 800 surveys lresults for adults we've had input from the the Tessa Jowell brain cancer mission, they had a survey with over 1500 responses, we had over 40 people in the detailed workshops. So we're now bringing that together and saying right, what are the unmet needs of the brain tumour community, and the team that within the charity are including involvement champions are putting together what's called a fact base, which is effectively right, let's get all the information in one place, all the different sources. So we know where the information came from. We know whether it's been generated by the charity, by the Tessa Jowell brain cancer mission, by other surveys, by other information that's out there looking at the latest information on research and funding, and so on, and so forth. So that's all being brought together now and melded into one incredible document called the fact base. So that's kind of where we're at, at the moment. And then that will then and that's being sort of finished off, sort of May, June time. And then when we get into July, we'll be doing the it's called ours to change. So sort of July, August, September will be what can we do as a community and with all the influence that we have both political influence, influence because of the research funding that we do, and the funding and the support we can give? What do we want to do? What What can we change? So that's when we get radical? And look at idea, look, look at say, Okay, this is what the fact base is telling us. This is what the urgent unmet needs are of the whole brain tumour community. And we are going to look, we're not just keeping it to UK, it will have a UK centric feel, because of the policies that we have to operate within, you know, we have the NHS and so on and so forth, but by including the American charity, we've also I should have said we've got an Australian charity involved as well. So we're, we're, we're kind of hoping that it'll cover worldwide as well. Within reason we've got to be careful, you don't you know, try and eat too much of the cake so to speak. So that's what we then do. So the next phase will be the ours to change what what can we do? Realistically, given the funding that we have given the influence So we have we know what the unmet needs are through the mapping the need, what can we then do? So that takes us up to about sort of September, October time. And that's when we get into what's called Getting radical. That's what we say, right? Okay. We know what the unmet needs are, this is what we think we can change, how do we actually go about changing it? What do we need to do? What what major strategy pieces? Do we as a charity, and as a sector need to put in place to drive the change that will have the biggest impact in the areas of unmet need? So that will, that'd be quite a complicated and also, there's no limit. What resources do we have available to allow us to do that? You know, we'd all like to say, Yeah, we want to solve, we don't want any more brain tumours yeah great ok how do you do that? Well, it's a bit tricky. So we're by doing this systematic way, and gathering the information, looking at the main strategy areas, looking at the getting radical. So again, nothing's off limits, here, it comes back to Alex's surrendering certainty, you know, we might decide to do something as a charity that is no one's ever thought of before. But the other term, Alex usually thought was was very good as it's a swallow hard moment, we might get a point where we have to make some really difficult decisions on what we think are the areas that we as a charity should focus on. Because if you focus on one area, it means you can't focus necessarily on somewhere else. So there will be elements that at that point, is there, right? What resources do we have? What can we do? And then finally, sort of September ish, back end of the year, up to the March next year, that's when we will be what we're calling a generating momentum. So that's when we will actually look at right we'll put the final touches on the strategy, clearly get it signed off by the trustees by the by the board, and then we'll start looking at how do we then generate the momentum behind making that happen? So in terms of communication, in terms of asking for other support, whatever strategy direction we're we're going to go in and what the main pillars are, what we're gonna do, how do we do that? Because the idea is, this is a living breathing strategy, it will evolve, it will veer in all, but this is really going to set the groundwork for the next five years as well. So we need to have an element of flexibility in there. But also, we need to know what what are the key things that we need to do. So that'll be sort of end of the year, sort of early next year. So that by sort of December, stroke spring, next year, we're out there, we're telling everyone about the strategy. We're asking people to get involved, we're telling them what they can do. So that that hopefully will then be back end of the year. And, and then the hard part will then really begin of actually making the strategy, work, whatever it is,

Chandos:

how can people get involved? How can they support the work that you and the team are doing to, to make that happen, and to reach that end goal?

Andy:

A few things really, one is to understand that or appreciate that there is a current strategy ongoing. So we haven't just stopped as a charity, what we're doing towards the new strategy. So we're in the middle of a defeat in brain tumours leaning in. So I think Alex mentioned it in his last podcast where we're basically saying for this last year, and this year, because of COVID. You know, If COVID hadn't happened, we'd have had this, this work we're doing now probably being done in 19/20. So that it fed seamlessly from the last five year strategy. We are where we are. So we had we, we put a two year extension on most of the last strategy saying leaning in, let's really make it work, let's make it happen. Let's focus on the areas of double survival, half the harm, and push that so that's still ongoing. So if people want to get involved, just carry on doing what you're doing in a nice way, supporting the charity, doing all the things that you can do. So in terms of and that involves fundraising, looking at this sharing your story, taking part in an event, volunteering, like I do, you can get your company involved, set up a support group, campaign for change, there's various ways you can get involved currently. And that will that will continue. So don't feel I don't have to wait till September or December. No, get involved now go on the brain tumour charity website, look at ways you can get involved in and it's all there. Other ways you can get involved is is understanding that your community the inolvement champions are heavily involved, the other charities are heavily involved. So if you're, if you're part of and working with other charities, ask them how it's going to ask their leaders as how's it going the co creation strategy, and specifically on the brain tumour charity website. If you go on to the homepage, and you hover over the about us section, hover over the strategy section and there's a line that says beyond brain tumours and if If you click on that, it sort of summarises a bit of what I've gone through here. And at the bottom it there's a way you can get involved. So you can put your name and put your email address in, say how you want to get involved, how any, any way you want to, you can do it. And that will go to the co creation team, to then get you involved. So if, if after hearing this, you say, I've got, I want a story, I want to get my message, I've got something I really want to contribute. I want to make sure this is being done, or that's being done. That's how you do it. I'll repeat myself on the homepage, about us our strategy beyond brain tumours. And please do leave your information there. It also says, How did you hear about this? So please mention the podcast be nice now for if a few people that listen to this and actually gone and said, Yeah, I want to get involved. There's some really good things happening isn't groundbreaking stuff happening. We can all leave a legacy for the next five years to really improve the world of the brain tumour community, both for those involved and unfortunately like myself, or through carers, or the actual professions themselves. So please, that's how you can get involved specifically, if you want to.

Chandos:

Amazing Well, thank you so much, Andy, for giving up your time to talk to me today. It's been amazing to hear what you're up to.

Andy:

That's alright hopefully I'll speak to you again in the in the near future.

Chandos:

Thanks again for listening to this episode of the brain tumour charity podcast. If you want more information and support headed head over to thebrain tumourcharity.org Whether you've been diagnosed with a brain tumour or a family member or friend has the brain tumour charity here to help call. 0808 800 0004 that. 0808 800 0004 For more information and support.

Sarah:

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