Let's Talk About Brain Tumours

Episode 4 - Spotlight on 10 Ways We Can Help

• The Brain Tumour Charity • Episode 4

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In this episode Chandos talks to Eve Kelleher, the Head of Services at the charity about some of the ways our Support Team can help people who have been affected by a brain tumour diagnosis.

You can find out more about the 10 ways we can help here https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/

They talk about our online communities, from our Facebook support groups, Health unlocked to our Support Instagram  you can find out more about our online communities here https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/online-brain-tumour-support-groups/

Eve explains how as well as our main support service for adults we also have a dedicated Children and Families Service  https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/children-and-families-service/ and a Young Adults Service https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/

Eve also talks about some of the organisations we've partnered with to provide specialist support and advice to our community such as our Relationship Service https://www.thebraintumourcharity.org/living-with-a-brain-tumour/relationships/relationship-counselling-couples-affected-brain-tumour/ and our Benefits and Money Clinic https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/benefits-clinic/

If you would like to make a donation to the Charity you can do so on our website https://www.thebraintumourcharity.org/donate/

If you would like more information about the support available you can email support@thebraintumourcharity.org

Better Safe Than Tumour

Money Advice Clinic

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 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.

Chandos:

Hello, you're listening to the second episode in the Spotlight Series for the brain tumour charity podcast. I'm your host, Randy, my guest is Eve. And we talk about the 10 ways that the Chinese you can help whether you're you've been diagnosed with a brain tumour, or as a family member or friend, the charity that help they offer a range of support is inclusive and accessible to anyone affected by a brain tumour, whether it's a low grade or high grade, whether you're an adult or a child. So Eve, could you tell us a bit about your role and what it is that you do within the charity?

Unknown:

Hi, turns us Yeah, thank you for inviting me along. My name is Eve Kelleher, and I'm head of services here at the charity. So that means I look after all of our support areas within the charity. So young adults, children and families and adults. So all of the support that we offer, including our website content that kind of sits under my remit, really, and I have a lovely team that helped deliver that support.

Chandos:

And in terms of offering support through the charity, what is the current goals and things that you're that you guys are working towards to deliver day to day?

Eve:

Yeah, so one of our overarching charity goals is to have the harm that brain tumours have on quality of life. And one of the ways that we do that is providing support for everyone that's affected by a brain tumour diagnosis so that they don't face this diagnosis alone, and that they don't face it without having access to the health information that they need.

Chandos:

And what informs you making offering services? So what what do you guys look to to direct you in the in the area that you need to provide support to people in,

Eve:

we're very aware that people are in different places when they contact us. So some are seeking direct answers or information to specific questions, others have more complex queries or have higher emotional support needs. So we kind of try and make sure we have a breadth of support that meets all of those needs. But we work very closely with our community as well to understand what those are. And we've also commissioned research in the past to really get to understand the specifics of those needs. And then from that, that's where we've shaped the 10 ways that we can help

Chandos:

in terms of those 10 ways that the charity of support, what support is directly helping young people.

Eve:

So we have children and families and young people service. So that looks after anybody. So for young adults perspective as anybody from the age of 16, to 30. And for children, families in any families that are affected with a child under the age of 16. So we look after as it's anybody as the person living with the diagnosis, but also friends and family, carers, anybody that sort of connected with that person. So we're here for everyone. And that can include a variety of things through one to one support to talking to a member of our team. It might be joining us for an event, which are digital at the moment is an online event, to meet up with others who are in perhaps the same situation as you and just meet other young people. So we run those regularly. And we also have closed Facebook groups as well that dedicated to those audiences. So we have quite a degree of specialist support for people. Yeah, for young people.

Chandos:

what support is available for someone who's newly diagnosed and is quite unsure about the situation that they're going through?

Eve:

Yeah, so I think when you've just fallen, that sort of initial diagnosis, and you're just in this whole new world of looking for information answers, what to do next. So we have an information pack that somebody can download or order and be sent out to them, which is kind of like an introduction to the different things that you might come across who we are as a charity and how we can help. So it's a great kind of first starting point of information. So includes a few different booklets to help somebody guide through what's gonna happen next, and where they can access more support.

Chandos:

And I saw on your website that you have a step by step guide is that for someone who's just just been diagnosed,

Eve:

it could be for anybody really Yes. So it could be what you've just been diagnosed, or it could be at any point in your journey. So in terms of that's perhaps a bit more detailed information packet really walks you through in a more detailed way, exactly what's going to happen at every stage. And for each stage, then it also has different questions, you could ask your medical team steps that you could take resources to go away and read. So really gives you a kind of a kind of what to do next, depending on where you are. So lots of really great information and again, lots of signposting back to additional support. So when you're ready, it's there for you to to access.

Chandos:

And all this support is online and offline if I'm correct and thinking so someone can phone up but they can also speak to someone in person.

Eve:

Yeah, absolutely. Because it's different things to different people. Have them at different times. So for some, it's going on to our website and having a look at something like the step by step guide or origin or information pack to read and digest in their own time. For others, it's just they really want to talk to somebody, it's really important to connect one to one with somebody and just have somebody to ask those questions and get a more immediate answer. Or it might be, you have a more complex need that you want to talk through. Or you just simply want somebody to listen and just have a safe place to have somebody listen to, to what you're going through, and that emotional support that I talked about earlier. So in that case, then somebody might call through to our support lines, or the Oh 808 800, triple Oh, four number, or they might start a live chat with us. So you can chat to us on online and talk to direct to one of the team. So that's where you're getting that more enhanced, sort of one to one support from the team.

Chandos:

And at the start of this chat, we spoke about what informs the support is offered by the charity has the last year in the last or the last 18 months, I guess, informed the choices that you've made to offer support.

Eve:

Yeah, I think so definitely. It's been a difficult 18 months or so now, for for a lot of people. And particularly if you've just been diagnosed with a brain tumour and looking for that extra sort of bit of support and help or information, we've seen a 50% increase in terms of people reaching out to us for support. So definitely that need is growing. We're also seeing sort of length of calls getting longer as people really need to reach out and talk to somebody. So that sort of helped us in terms of informing what people really need and understanding where we should take what direction we should take our support in. And that's really important that we're listening to what we're hearing through the support line and what people are telling us or their needs. So we over last year, we developed, for example, a dedicated hub on our website that was all around Coronavirus, and sort of the impact that has so some really specific and dedicated information to help deal with whether that's to do with the treatment or just living day to day with Coronavirus. also impacting on life in general,

Chandos:

is all of the information that you get from working with people on that on taking them on that journey with them. Does that feed into the Briner?

Eve:

Absolutely, yeah. So the Brian app is a really great tool for that sort of day to day check in. So you do quality of life check ins and you can keep track of what's happening across your day to day and week to week and then access and use that to look back at kind of you know how you've been and perhaps use that for appointments with your healthcare team. It's a really great way of just tracking what's going on for you and recording what's happening day to day, we recognise that we can't, you know, we're not experts in everything, we can't do do it all. And we're it's a relatively small team. So we deliberately set out to work with partners, external partners to deliver some of the more specialist support. So the first partnership that we explored and set up a service with was Citizens Advice, gave just recognising the difficulty that people experienced following a diagnosis, a lot of people have to either give up work or reduce their hours. And that can really have quite a financial impact on somebody and it could be the person themselves, or it could be their carer that's had to change their their working patterns or reduce or stop working. So finances can become really tricky for people. It's also a really complex world in terms of if you're trying to access benefits at any level, it's a very complicated process at the best of times. So we set out this partnership with Citizens Advice, who are experts in this area to run a money and benefits advice clinic. We've been doing that now for about five years. And it's a telephone service where somebody can book on to the clinic and talk to one of the benefits advisors from Citizens Advice, that somebody that really understands and knows a lot about the difficulties for our community and the impact of brain tumour can have on somebody, that's just a great way, just a great service to be able to offer that sort of dedicated support around finances to help alleviate some of those pressures. So that now runs two days a week as a telephone clinic and has been say for about five years now. So it's a fantastic resource for people looking for that specific support.

Chandos:

And I guess that links into what Emma was talking about last week about the diagnosis can look so different for anyone with the same genotype it can be vastly different.

Eve:

Absolutely. Yes. And and what people are trying to deal with and, you know, might be struggling with at any one particular time can really vary. So we want to make sure that, you know, we've got support there for for everyone and anyone at any any point. So this is one one way in terms of the benefits connectors is one way that probably affects a number of quite a wide range of people within our community. And the other partnership that we set up was around relationships. So when we did some dedicated and research into this, we asked people in terms of the impact of a brain tumour on a relationship. And two and three people were telling us yes, there was a negative impact on their relationships and they would like to see some dedicated support, but there just wasn't anything out there at the time. So this is going back two or three years ago, there was nothing out there. So we partnered with relate who are nationwide relationship expert to deliver counselling so we offer free six counselling sessions for are people looking for relationship support, so that's referred through us and then passed on to relate to provide that counselling support. So that's really great to be able to offer that. And about 100 people have been through that support. So far in the first year, we're looking to grow and expand on that. Going forward, it's proved a great success. And

Chandos:

of all the 10 ways that we just talked about, I take a little free access for anyone who needs that support.

Eve:

Yeah, absolutely, that's really important to us that they're free. They're, they're integrated and as accessible as possible, so that, you know, high quality services that we try and personalise as much as possible to the individual and, and what their particular needs are at any time just to be relevant, and be really responsive to people's needs. So our aim is to try and connect people. So really important is try and connect people either to somebody, or perhaps somebody within our team that can provide that one to one support. Or it could be just to others going through a similar experience, we want to make sure that people don't feel alone or isolated in their experience. So we also offer our online communities, which are a great way of people connecting up with others who might be going through a similar experience. So we have our Facebook groups. So we have some dedicated Facebook groups. So we've got seven Facebook groups. Now, we also have some health and Noct groups, which are dedicated health platform. And we also recently launched and Instagram account as well. So there's lots of different ways people can connect and talk to others who are going through a similar similar experience to them and just not feel so quite so alone. And of course, also these lovely podcasts that we've launched is another way of people connecting to others.

Chandos:

If anyone listening does want to get the support, where do they go to get more information

Eve:

is our website. So at the brain tumour charity.org If you head to the Get support page, you'll see our 10 ways that we can help them it's set out there in terms of those 10 different ways that we've talked through a little bit more detail and how to access each of those.

Chandos:

Great. Thank you for chatting with me today. If you want more information about what minute Eva talked about today, please head over to the brain tumour charity talk. If you feel like you might need help because you're newly diagnosed or as a family member or friend charities as a help the telephone number is Oh 808 800 Triple 04 That's Oh 808 800 Triple 04

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 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