In this episode, Bri Salsman speaks with Dr. Helen Bulbeck and Jodie Eveleigh from brainstrust, a UK-based organization dedicated to supporting individuals affected by brain tumors. They discuss the origin of brainstrust, which was founded out of personal experiences with brain tumors, and the unique coaching approach they take to provide support. The conversation highlights the importance of personal connections, the difference between coaching and counseling, and the impact of their initiatives on the brain tumor community. They also share insights on future goals and the collaborative nature of their team.

• brainstrust provides comprehensive support for brain tumor patients and caregivers.

• The organization was founded from Dr. Bulbeck’s personal experiences with brain tumors.

• Coaching is a transformative approach that empowers individuals.

• Personal connections are crucial in providing effective support.

• Understanding the difference between coaching and counseling is essential.

• Wraparound support helps individuals navigate their challenges.

• Patient involvement in research is vital for meaningful outcomes.

• The organization has expanded significantly over 20 years.

• Future goals include reaching more people sooner with support.

• Team collaboration is key to the success of brainstrust.

 

Resources

Check out a list of the most common medical terms relating to the brain tumor experience: rewired-minds.com/terms

Connect with brain tumor organizations here: https://www.rewired-minds.com/braintumorresources

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Connect with Rewired Minds

Website: rewired-minds.com

Facebook: https://www.facebook.com/RewiredMindsPod

Instagram: @rewiredmindspod

LinkedIn: https://www.linkedin.com/company/rewiredminds

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Connect with Brainstrust

Website: www.brainstrust.org.uk

Facebook: https://www.facebook.com/brainstrust

Instagram: https://www.instagram.com/brainstrustuk/#

LinkedIn: https://www.linkedin.com/company/brainstrust

X: https://x.com/brainstrust

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Be a Guest

Interested in being a guest on a future episode? Visit rewired-minds.com/guest for more information and to submit your request.

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Disclaimer

The stories shared here are personal accounts from the brain tumor community for informational and awareness purposes only and are not intended as medical advice. Always consult with qualified healthcare professionals regarding your specific situation. Most importantly, take care of yourself as you listen and process.

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Transcript

Bri (00:00)

The stories shared here are personal accounts from the brain tumor community for informational and awareness purposes only and are not intended as medical advice. Always consult with qualified healthcare professionals regarding your specific situation.

Guests sometimes use medical terminology, so I've partnered with Northwestern Medicine Malnati Brain Tumor Institute to provide definitions of common terms.

Most importantly, take care of yourself as you listen and process.

Bri (00:36)

I'm Bri Salsman, a brain tumor survivor and identity integration coach, and you're listening to Rewired Minds, a podcast where we share brain tumor stories that change us. Today, we're spotlighting Brainstrust, who is based in the UK. Joining me to share more is Dr. Helen Bulbeck, who is the director of services and policy, and Jodi Eveleigh who is the head of support. Welcome, ladies.

 

Let's start with, a high level overview of what Brainstrust is all about and who you serve.

 

Jodie Eveleigh (01:04)

We provide support for anybody living with a brain tumour diagnosis. So whether that be a patient's, the person themselves, or caregivers, so family members, close friends, anybody who, you know, is connected to somebody who's living with a brain tumour diagnosis. So our kind of main offer is all about supporting that person through their diagnosis and we appreciate that people will need different things at different times so we have lots of different ways in which we can provide that support and really kind of connect with them to help them live their best possible day.

 

Bri (01:40)

You know, I know we're going to dive into this as we chat, but that support that you all offer is so wide and varied. And a lot of the things that you all do are really unique and different from some other brain tumor organizations that I have interacted with and so I'm excited to dive into more of that support site and what those services are that you offer.

 

Before we go there, I'd love to kind of press the rewind button to kind of hear your origin story and where this all started.

 

Helen Bulbeck (02:12)

So we're very big on stories because we know, you know, when you're living with a brain tumor, whether you're a patient or caregiver, everybody has a story to tell and they're so important because they're life changing.

 

The organization started with my story. So my daughter, Meg, had just finished A-level. So she was just 18, was out one night, had a seizure and I was called to A&E because she couldn't

 

remember anything from the previous week. Very sadly, my daughter was diagnosed with, it was actually a grade two ganglioma, which is quite rare, but we didn't know anything about brain tumours at the time.

 

And she was just focused on going on to university. She really didn't want to know about her diagnosis at all and so we spent the first year probably really in a black hole.

 

She ended up going to Boston, Massachusetts for quite intricate brain surgery because her brain tumour was deeply seated in her brain across three lobes. So it was quite impactful. And she had the intraoperative MRI surgery with Professor Peter Black because we didn't have intraoperative MRI available in the UK.

 

Now Meg is, she is because she's a survivor, is a very charismatic person and because she just left college a lot of her friends rallied round, they wanted to fundraise for this surgery. So we had the surgery, probably the price of a new car, this was in 2004. And we had a successful outcome and during this time we'd learnt such a lot about what it means to be diagnosed with a brain tumour, what the different grades of brain tumours mean.

 

And we had some money left over so we thought well we can either just give it to another charity or we can help other people because we had a successful story to share.

 

Bri (03:57)

That aspect of traveling internationally for treatment, that's a big decision. How did you make that decision?

 

Helen Bulbeck (04:05)

I think it was probably born for the wrong reasons. I was so angry with her professor of neurosurgery in the UK who just wrote her off, said go away and have a short life, good quality of life, but it wasn't until we got to the States and we met Peter Black that he actually told us that grade two brain tumours always tend to transform to a higher grade within five to seven years. And I just felt so angry that we had been denied this information because that really changed our whole attitude then to getting her treated. They wouldn't operate in the UK. They said it was too dangerously sighted and she'd be left with too many neurocognitive deficits. And I just felt this was a professor of neurosurgery. If he knew about Introbolive MRI should have shared it with us and if he didn't know about it then for somebody of his calibre as a professor he should have known about it. So I think it was really born for all the wrong reasons. I was motivated through anger and frustration.

 

Bri (05:00)

Hey, there's a lot of different things that motivate us and sometimes you're absolutely right. It is anger and what a significant motivator.

 

Helen Bulbeck (05:07)

Yeah, and that's what drove us to launching Brainstrust because I just didn't want people to feel as lost as we had the day we were told Meg had a brain tumour. The other factor that came into play is that 12 months after Meg was diagnosed, I was diagnosed with head and neck cancer. So by the time she had her surgery, I was going through my treatment. We both recognised what it felt like to be both the caregiver and the patient.

 

Jodie will confirm this that I think 50% of our first contact is through caregivers and 50% is through people who are diagnosed with a brain tumour. So we support you know both caregivers and patients but there's a huge recognition that they have different needs and sometimes you've got a patient and a caregiver who are living very closely together but they want to operate in parallel universes, they want different information at different times, they have different needs, different expectations and that's I think that's where we can really provide rich support.

 

Bri (06:03)

How did that officially translate into launching Brainstrust?

 

Helen Bulbeck (06:07)

The one key thing that we learned is, because it was so lacking for us, is that you need really good, authoritative, evidence-based information so that you can make an informed decision. And I felt, you know, we went to America, saw Professor Black and said, yeah, I can operate. I do three or four of these operations a week.

 

I just felt that we had done all the research we could possibly do and heaven forbid, even if the surgery had gone pear shaped, I felt that the decision we made would have been the right one because it was based on the information that we had, which was factual. It was evidence based.

 

Sometimes, you know, people decide not to make a decision and that is still a decision. And I think that was the mantra for starting the charity is we just wanted people to be able to access the relevant information that would meet their needs and then be supported in their decision making. We never believe it's within our gift to tell people what to do, but we share the information so that they are able to make an informed decision about what they want to happen to them.

 

Bri (07:11)

And that is so important because there's a lot out there and we can pretty much find anything we want to confirm whatever we already think about something. It's pretty easy to do that these days. And so kind of parsing through, what's real versus inaccurate, outdated, what's current, medical approaches, techniques, studies, clinical trials, they're always evolving and changing and new strategies are being introduced. And so it can be a lot to stay on top of when you're in the work, let alone having the diagnosis. And for many people, you know, brain tumors is not on their radar at all before they got diagnosed. And so it's just like a drinking from a fire hydrant of information and trying to parse through all of that.

 

So as you're starting to bring this to life and make it a reality, I'm curious about an early moment or breakthrough that is really memorable for you.

 

Helen Bulbeck (08:07)

I think probably supporting the very first family with this diagnosis and they're still involved today. This is a really significant year for us because this year we're 20 years old and I can remember the day I picked up the phone to Anita. She'd got twin children who were 17, Jack and Charlotte, and Charlotte had been diagnosed with the glioblastoma. So I worked really closely with her about identifying what was important to them because she knew that Charlotte wasn't going to make it. And she'd also got this added complexity with her being a twin with her brother. So she had a lot to deal with. And I think just, you know, using coaching to help the family define what was important to them, how they wanted to remember this time, what did they not want to regret?

 

And I talked to Charlotte, you know, so she was able to share things with me that she probably couldn't share with her sibling or also with her parents. So being able to use coaching to bring that family together. And I'm still in touch with Anita today. And I think also because Charlotte and Meg were virtually the same ages. And I had this huge conflict at the time that there was never any resentment from Anita that, you know, my daughter had had a brain tumor. She'd had the surgery and she was thriving, whereas Charlotte didn't make it. So I think both being mums, you know, we were really connected at that point.

 

Bri (09:29)

This word just keeps coming back up in terms of this work is is deeply personal for you all. There is not only personal experience, but even the connections that you're making with others in the community are deeply personal as well in that your experience may not be the same experience but they're similar enough in a community that is so small relative to other cancer types, that connection is so critical and important.

 

Jodie Eveleigh (09:58)

I think that's what makes us so special about brainstrust and something that I value so hugely as well, that we can and do, you know, really get to know somebody. They get in touch and they tell us about their diagnosis, what type of brain tumor they have, what type of treatment they've had, whether they've had surgery. But actually, you know, what they really want to talk about isn't necessarily medically related, but it's the personal aspects of life. So whether they've had a complete shift in kind of close relationships, their kind of role, either within work or within the household has changed, things that they're worried about. So it could be related to treatment, but it actually, perhaps it's, I'm more worried about the impact it's going to have on my family or the people close to me. It's when people are speaking about things that mean so much to them where you can see the real impact through the coaching that we do.

 

And for me, I think that is one of the things that I just feel so grateful for that we have the opportunity to give people the space to talk about those things because a brain tumor diagnosis is life changing in so many different ways that are so personal to to people and yeah I think that's what you know what makes us stand out and for me, I've been a part of Brains Trust for eight years now and that's kind of what inspired me to to kind of reach out and want to join the organisation.

 

So we have a personal experience of a family member having a brain tumour diagnosis who accessed support through Brainstrust. And the conversations that we had with brainstrust were completely different to the conversations that were being had with the medical team. And it wasn't that one was less important than the other, but they were just different and both had an impact. But just by having a dedicated space or, you know, a contact through us to talk about things that you don't feel you can talk to about to a doctor, medical professional, it's just so important because it validates that, you know, it is okay to feel worried about, you know, am I going to be able to go on holiday with my family? Am I going to be able to go back to work? Am I going to be able to kind of provide or, if they have young children, are they going to be able to kind of see them starting school or get married or that sort of thing? You know, they're not really conversations that people feel they can go to their medical teams.

 

When they're in those appointments, they're there to talk about their treatment, which is obviously incredibly important, but it's just amazing that we can give them a space to have those conversations rather than have them build up in their mind and they're in a space where they're not explored.

 

Bri (12:41)

I've often said, you know, that medical clearance is one thing, but life clearance is a completely different thing. And there's not a lot of guidance out there. It's very much a experiment, a personal experiment of like your level of comfort and how does your body respond as you start getting back into day to day life?

 

And the coaching program has come up a few times in our conversation as an avenue for this side of support. And I'd love to hear more about this coaching program and why coaching. A lot of organizations have mentorship programs or support groups or things like that. And so I'm curious about the why as well.

 

Helen Bulbeck (13:23)

When we founded Brainstrust, I was still working full time. I was an education consultant going into really tough schools and working with literacy, teaching teachers how to teach reading and writing and things like that, but also working with senior leadership teams, turning schools around. And I experienced coaching myself and it was transformative for me because what it enabled me to do was to gradually let go of that part of my life and then really focus on Brainstrust to really determine what we wanted the organization to deliver.

 

And the biggest learning teachable moment I suppose for me was actually understanding what my values are because even today if I feel conflicted I know it's because my values have conflicted and I just go back to them and it helps me with any really big decision-making.

 

So having experienced coaching myself and having seen how it was a transformative force in my life, I was absolutely adamant when Brainstrust was founded, that it had to be very people focused and we had to build the organisation on coaching principles. Because, you know, people will just crack on with their lives, they get on, they just sort of live in the worker day, muck and bullets of every day, getting through life. And then you get this heart-stopping diagnosis, when suddenly all the things that you've built up around your life over the years are just stripped away from you in a split second.

 

We truly believe that at that point what you need is coaching. You need to be solution focused. You need to be a positive thinker. You need to think about what the challenges are that are coming down the line. And you need to have the support in place, which you need to identify yourself. So coaching is just one intervention. We've got support groups online. We've got our peer support. We've got all of our validated resources, health information resources.

 

Over the years we've learnt too that lot of people don't really appreciate the power of coaching. They come to us demanding that they want counselling, they want to be tipped into therapy.

 

But when we actually talk to them about the difference between the two, I'd say 90% of people opt to go down the coaching route. They don't want to be tipped into therapy. And our experience has shown that those that do need counselling or a deeper kind of therapy tend to be people that have mental health issues prior to their being diagnosed with a brain tumour.

 

So they're living with a complexity of very stressful things, often for which there has been no resolution. And they're bringing all this to the table alongside their brain tumour diagnosis. And we do have a team of counsellors. We've got people that we can refer patients and caregivers to. But we find that coaching is a much more positive force and a much more transformative force and keeps people solution focused and positively thinking.

 

Bri (16:04)

For those out there who might be thinking, aren't they the same thing? How do you all describe the difference between these two?

 

Jodie Eveleigh (16:11)

I've had this conversation this morning, so it's fresh in my mind. The easiest way I've found to explain the differences between coaching and counselling, is that coaching is all about finding a way forward. And where counselling can be helpful is if there are things that have, you know, happened in the past, but whether that be many years previously or in recent months. If those things that have happened that are causing distress or are preventing them from finding that way forward, then counselling can help with kind of unlocking that and supporting those things.

 

But as I say, coaching is all about finding that way forward. And then we tend to go in a bit more detail based on kind of their personal circumstances. So in coaching, often, we talk about goals. So, you know, an initial coaching conversation with somebody would be trying to elicit, you know, exactly what, what do they feel they need at the moment?

 

There's obviously been a point at which they felt they need to reach out for support. So usually an initial conversation, you know, we'd get to know kind of what is what is happening for somebody at the minute. And what you know, what do they what do they need?

 

And just by asking questions, it still amazes me now, like how much you can really kind of learn from somebody. But also that how much they can learn about themselves through coaching, because it is so collaborative, and it's, you know, such a, it's very kind of questions based.

 

It's amazing when you can almost see that kind of light bulb moment when someone is kind of thinking to an answer the question you've asked and they think, well actually you know I know this, I know what I need or I know now actually what I'm struggling with the most.

 

Bri (18:00)

I think that was a really great distinction between the two. And it's a conversation I have a lot as well. And interesting, Helen, I also have a background in education. And so I keep thinking about wraparound support, right?

 

It seems like that's kind of the approach that is taken. And so when someone reaches out to you initially and maybe doesn't know what they need, they just know, I need something. How do you guide them through this process to identify which of your services is best for their situation?

 

Helen Bulbeck (18:33)

So we go back to Nancy Klein, great author. And the first question, that's the question we ask the most is what are you struggling with? And we just keep asking that question until they've emptied their heads of everything they're struggling with.

 

And then using that as the basis for our coaching conversation, our community has told us that there needs to be six key indicators as being essential to quality of life. So they want to feel less alone. They want to feel part of a community. They want to feel on top of things and not overwhelmed. They want to feel resourced and they need to know where they're going to find their resources. They want to feel supported and they want to feel able to navigate their clinical care so that when they walk into the consultation room, they feel like they're an equal player with their medical team.

 

And so that would be a starting point. We ask them on a scale of one to five to measure which ones of these are working well. You know, it's as good as it can be given that I've been diagnosed with a brain tumor.

 

And then the lowest scoring ones would be the start of a relationship where we talk about what's not working well. If it was working well, what would it look like and what are the things they might be able to put in place to increase that from a one to maybe a three.

 

Jodie, I don't know if you want to add anything there.

 

Jodie Eveleigh (19:50)

That's pretty much exactly what I was going to say. It's providing people with the questions and the tools to be able to articulate exactly what they feel they need at the moment. That then leads us to being able to signpost them to our kind of other services. So like our meetups, whether that be online or we have occasionally face-to-face meetups, where our peer support and our information resources and also our coaching services as well.

 

And equally as well, we appreciate that what people need can change over time. We regularly check in with people because of that kind of personalised relationship and you know then then they can kind of reach back out to us if things do change. So they might want to speak to one of our peer supporters. If perhaps they are about to have treatment or have surgery, they might want to speak to somebody else who has gone through that experience.

 

Equally, when they first got in touch with us, they might not have felt able to join one of our groups because we appreciate that sometimes group of people, it can be unpredictable. You don't necessarily know what other people are going to say, how that's going to impact you. So it might have been at the first point of contact, they weren't able to, but actually now, what they feel they need is to connect with other people and hear other people's stories and experiences. 

 

So I think that's where those kind of personal connections and providing people with the tools to ask themselves what they're struggling with. I mean what Helen's saying about that question, it's my favourite question because it can just unlock so, so much and when is there another time really when people are really asked that or when they really ask themselves that, you know, what am I struggling with? Because it seems so big but by having a conversation with of our team, you can really break it down into the specifics.

 

Helen Bulbeck (21:46)

Yeah, and when they they've listed it, you can get them to divide the list up. So which of these things that you're struggling with, what can you influence? And the ones you can't influence, you just park. So immediately, their overwhelm is reduced. And I think organizationally, too, what it means for Jodie and I is that, you know, we know that our support team is having these conversations at every single touch point on the patient and caregivers pathway.

 

But it means we're able to be assured about the quality of the conversations and the coaching tools that are being used because coaching is in the DNA of the organization. So, you know, we know that the quality of the conversations that are being had are really good.

 

Bri (22:26)

What jumps out to me about that is first and foremost, how tangible this is. This is not just a heady conversation or in theory or anticipatory or things like that. I'm imagining listeners hearing that question, what am I struggling with? And immediately it's unlocking something for them, even just listening to this conversation.

 

And so then to imagine that behind that question is this plethora of support and resources to help navigate what's unlocked through that question is really, really powerful. It's incredible.

 

And I also know you all have had several other initiatives over the years alongside the current services that you offer. In particular, the Patient Research Involvement Movement Prime. What would you like to share about that?

 

Helen Bulbeck (23:22)

Increasingly, people are, they've got Google, they talk to their clinicians, they're asking about clinical. And over the years, I think what we realized is that there's a gap between what patients and caregivers want in terms of research and what clinicians and researchers believe the community wants.

 

Prime really, we launched it in 2021, is the patient research involvement movement to close the gap between the clinical research community and the people who are living with a brain tumour. So what it does is help to ensure that clinical research is shaped by the real experiences of patients and caregivers. So it makes the trials more meaningful to people who are living with the diagnosis, it makes them more fundable. And ultimately, it improves treatment options for the brain tumour community.

 

So I'll give you an example. Future GB is a rare neurosurgical trial because it's not easy to do neurosurgical trials. You can't really randomise patients to an arm where they have neurosurgery and an arm where they don't. But this particular trial is comparing the different technology that's being used in the operating room. And when the researcher came to us and said they were going to put in a grant for several million pounds worth of funding. And the first, the primary outcome was going to be overall survival.

 

So then we ran some focus groups, the team came and talked to the patients and caregivers and they said, no, we're not interested in how long we live. We don't want to be living a long time with some sort of neurological deficit where maybe we can't communicate, we lose our independence. For us, it's quality of life.

 

And they really listened. And so what they did was they changed the primary outcome to quality of life and it got funded. We know in the UK that unless you have public and patient involvement and engagement in trial design right from the word go where you're actually designing the question right through to dissemination trials now won't get funded.

 

And I think, you know, the PRIME movement, which started five years ago, we've now been really successful in getting over 30 million pounds worth of funding into brain tumour research in the UK.

 

Bri (25:16)

That's incredible.

 

Helen Bulbeck (25:17)

It's a really important movement driven by people living with a brain tumour, because they bring invaluable insight to the research process. And, you know, they really honed and refined top level quality applications, which had been one of the issues as to why brain tumour research just wasn't getting funded in the UK. There were applications, but they just weren't good quality enough because they weren't close enough to the people who were living with the disease.

 

Bri (25:42)

Talk about impact. I mean, that in and of itself is significant, really significant. What's some of the other impact your organization has had on the brain tumor community?

 

Helen Bulbeck (25:44)

We've evolved considerably from our original mission of just supporting a very few people, funding Meg's surgery, getting her story out there. Now we've got a national footprint. And when I say national, I mean, across all four nations in the UK. And we provide comprehensive support. We develop patient resources. We influence policy. We’ve been quite a positive force in getting patient data out back into the patients because it's their data, it belongs to them. And building communities through events and meetups. We're all about relationships and building communities.

 

Bringing communities within communities together so, you know, we can get people living with a high grade glioma coming together. We can get people living with a high grade glioma who want to know more about alternative and innovative and adaptive therapies that maybe aren't available through the UK health system. They come together and share their experiences. We've got colloid cysts community, acoustic neuromas, people living with low grades, people living with meningiomas, and people living with brain mets because they all have very different challenges and all have very different needs.

 

All of our approaches focus on helping people feel less afraid, less alone, and more in control with what they're living on a day-to-day basis.

 

Jodie Eveleigh (27:03)

I was just going to add, just the impact itself of listening to people, to what they want, is huge because then in that sense they're more likely to engage and get so much more out of it.

 

From our last impact report we had over over 136,000 people engage with our service. We had over four and half thousand people who had direct support. So that would be either giving us a call, you know, speaking to us on our support line through our one-to-one coaching, through our groups, through email support. And then of that, had over 1,200 people were completely new to us.

 

We often have people who stay in touch with us for the duration of their brain tumour diagnosis. And similarly with caregivers, we also can support and do support caregivers who are sadly bereaved from the brain tumour diagnosis as well.

 

When you kind of read those figures, it just shows how much we do and the amount of people that connect with us, which I think is you know it's amazing.

 

Bri (28:07)

Yeah. And I'm hearing a certainly impact, but I'm also hearing expansion. Where you've gone from fundraising for Meg's surgery to want to provide resources to others experiencing this to all the expansion that you just described, Jodie is incredible, incredible in 20 years.

 

There's a wide variety of services that you all offer. And of course, people learn about that through your website. But what people may not know about is the engine, so to speak, behind the scenes that makes all of this happen? What does your team look like and how do you all work together to bring this to life?

 

Helen Bulbeck (28:43)

What connects us is the shared principles. We make sure that everybody has purpose, they're really driven. But we also like people to be able to work with autonomy, so we make sure that they have the resources and the skill sets that they need, which is where the coaching comes in and also have the expertise. But also be very proud about what people do.

 

And then in terms of how we work with the community, well, we listen, we care, we collaborate and connect, but most of all, we work together.

 

Bri (29:12)

I love that. What does the future look like for you all? What do you see on the horizon?

 

Helen Bulbeck (29:17)

Well, that strategy we're people first. That will always be a foundational pillar for us. But we're just looking at our next five year strategy. And I think for us, it's more support sooner. So reaching more people sooner on their journey.

 

We know that there are a lot of people who don't know about us. We don't really have a big marketing budget, so a lot of it is by word of mouth, it's referral from healthcare professionals or just Googling. But for me, for every single person, the day they're told they have a brain tumour, to have our leaflet in their hand, that will be gawk dust, it really would. So reaching more people sooner on their pathway.

 

Jodie Eveleigh (29:56)

Absolutely and long term like Helen said the aim is that everybody who has a brain tumour diagnosis has the support that they need to have their best possible day and the even more of an emphasis on on coaching so that kind of idea of of coaching first support that is accessible for everybody.

 

Bri (30:14)

Yeah, that's amazing. How has doing this work rewired each of your minds?

 

Helen Bulbeck (30:18)

That's a really good question. I think it's believing in everybody's capability. The NHS is on its knees in the UK. There are pockets where it works really, really well, but it always seems to be in a place of change. It feels a lot of the time like it's water in the sand, everything shifting all of the time. And I think to look at a person who may be at their lowest ebb and help them see that they have their own assets, that they have the capabilities, that they have the resources. And it's just through creating that magic at the moment where you just ask them the right questions.

 

And we talk about powerful questions, but often you know a powerful question may seem quite innocuous like what are you struggling with and seeing that that transformation.

 

So for me, the rewiring of my mind is knowing that everybody can do this. Everybody with the right support, the right conversations can step into that space where they can begin to see themselves as an asset in their own care, that they can become co-pilots and they don't have to be part of this culture that has grown up over the years in the NHS, which is very paternalistic, where you just go to a paid professional and ask them to solve your problems for them.

 

And I think if, you know, everybody could see themselves as an asset and co-pilots in their care, I think the world would be a very different place. And if we could just help, you know, a thousand people feel like that a year, then I think we're doing a good job.

 

Jodie Eveleigh (31:49)

I think, for me, like I say, I've been here at Brainstrust for eight years with a hope of wanting to help people and support people at a time when they really needed it. During that time, from the community about what people really do need and what they want and I cherish every conversation that I have with people because I know you can just see it and hear it in people when they have that moment. Even if it's not something you know like that light bulb moment that's going to be really transformative it could just be the fact that somebody has answered the phone to them.

 

I’ve heard it before where people say, it's so nice to talk to a person as opposed to like an automated message or something. It adds that kind of personalised touch. And I think just being able to be that person who can make a difference to somebody's day, even if it's just for a short space of time, because they've felt heard. It makes such a massive difference, but it's also, I think for me kind of provided me with a passion and a drive to want to learn more and do more as well.

 

We're always kind of listening and learning and taking things on board. And I always come away from conversations feeling empowered to do more to help people.

 

Bri (33:14)

Yeah. Oh my goodness, ladies, Brainstrust is doing some incredible, incredible from where you started to where you are today, what a journey, what a journey. And I know there's still so much more to be accomplished. And so if listeners want to get involved, if they want to learn more, if they want to take advantage of the services that you offer, make a donation. Where can they learn about you all?

 

Helen Bulbeck (33:38)

Just Google Brainstrust, but make sure they put the S in the middle. Otherwise you get some sort of weird mind mapping site. www.brainstrust.org.uk

 

Bri (33:50)

Great, and I will definitely include that link in the show notes as well. Thank you so much to each of you for jumping on and sharing not only about Brainstrust, but Helen, about your daughter's story and your own story as well. And this is deeply, deeply personal and connected work. There's no doubt about it. And that absolutely comes through in our conversation. Thank you.

 

Helen Bulbeck (34:12)

No, thank you for giving us the space. Yeah, Jodie and I don't often get the opportunity to sit down and just chat like this, like a fireside chat. So it's really good. Thank you, Bri.

 

Jodie Eveleigh (34:21)

Thank you so much. I really enjoyed speaking with you. Thank you.

 

Bri (34:30)

Thank you for being part of the Rewired Minds community. Full show notes, resources, and a transcript for today's conversation can be found at rewired-minds.com/podcast. If you or someone you know has a brain tumor story to share, I'd love to hear from you. Visit rewired-minds.com/guest to learn more about collaborating on a future episode.

 

This podcast is a one woman labor of love. It's a true honor to bring it to your ears and facilitate connection among the brain tumor community.

 

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