Let's Talk About Brain Tumours

Episode 49 - Spotlight on the Children & Families Service

• The Brain Tumour Charity • Episode 49

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In this episode Chandos talk with two of our Children and Families and Young Adults Workers Amy Watts and Jessie Poole  about the support that is available to families who have children under 18.  Some of the things mentioned in this episode include:

If you would like to know more about our Childrens and Familes Service you can find out more here 

You can also contact the team by calling 0808 800 004 or emailing childrenandfamilies@thebraintumourcharity.org


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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 from the brain tumour charity about what we're doing to halve the harm and double survival.

Chandos:

Thanks for tuning in to this episode of the brain tumour charity Podcast. Today, I'll be chatting with Jessica and Amy from the Children and Family Service about what supports available to young person or child newly diagnosed or living with a brain tumour. Let's start by introducing yourselves and talk a bit about about your roles.

Amy Watts:

Yeah, so I'm Amy, I am on the children and families team and also cross over with the young adults team as well and I've been at the charity for I think about a year and a half

Jessie Poole:

Hi I'm Jessie, and I've been at the charity for now. just over seven months. I'm the Support Assistant and I also do children and families and young adults.

Chandos:

So we start with an overview of what the Children and Family Service is and what does it look like at the charity?

Jessie Poole:

Yeah, so in the C&F support team, we offer people both practical and emotional support and that just means we can either lend a listening ear having a cup of tea over the phone, we also try our best to answer any questions people might have, find information they may be seeking. We also have a wealth of resources, such as talking to children about a diagnosis, sibling support, and much more around all sorts of topics to do with children and their families.

Chandos:

And how would someone get involved with that sort of support, if they were looking for that information?

Jessie Poole:

People can get in contact with us and they might, they might know exactly what they're looking for in terms of they have a specific question, or they're looking for specific information, like, like, for example, if someone says, I'm not sure how to talk to my children about their diagnosis, or their children's diagnosis, or they might be seeking information about all sorts of different things, or they might have no idea what they're seeking, they just know that they want support and then we can kind of talk them through the different options in the service overview. Or they might just want to chat in general and then they get in contact with us, we can help them as best we can offer that support and then yeah, it can either be an ongoing relationship or one email and it's totally up to them how they want to use the services

Chandos:

So it's a tailored approach to each individual.

Jessie Poole:

Yeah, that's it.

Chandos:

I know that the charity do a lot of obviously fundraising and stuff but then that money is used to help deliver family days. What are these? And how can people get join one?

Amy Watts:

Yeah, so family days are they're basically a free day out put on by the charity, we do have funders, we're lucky enough to have funders that help us with that, including Lewis moody Foundation is a big part of that. But yeah, they're basically free days out and the purpose of them is to give families an opportunity to meet others who understand what they're going through, it's quite a unique situation. So it's just to meet others, whether that be the parents meeting other people or the kids meeting other people as well. They're also just a day out for the family to get away from the stresses of everything else that they've got going on. So we run them all across the country, just to try and hit different areas. So hopefully, there's there'll be one, wherever the family live, there'll be one for them and they're for families who have someone have a child under 18, whether that's the child that's got the diagnosis, or the parent who does our most recent one was at Marwell Zoo and that's a good example of the kind of things we do. So we had like a hall, which was a base for everyone to come to and everything's provided so obviously ticket into Marwell, all the food and then we also do activities throughout the days of but mostly at Marwell. It was the crafts that obviously they got all the animals to go and see and then we have lots of crafts activities back at the Hall if if people need a bit of space to chill out and our next ones are yet we've got ones in the pipeline, which I don't think we're quite ready to announce yet. But it's worth keeping an eye on the website, we always put the details on the website and then you can sign up through that there'll be a link to the Eventbrite page, and then they can sign up and like I said, it's all free, and then they'll just get all the information on there.

Jessie Poole:

We also have a parent's online support group that parents group is for if the child has a diagnosis, and it's a really welcoming and friendly space, and things like the family days also get announced on there as well. If you want to join the support groups that can either be found on our website if you type in support groups into the search bar, or if you want to find out more about them, you can email us

Chandos:

Um, what are brainy bags? And how are they made accessible to people who need them?

Amy Watts:

So brainy bags are a free gift for anyone under 18, who has a diagnosis themselves, they're one of our branded bags that are then filled with like loads of different toys, and books and all that sort of thing. We've got a load of stock at our HQ. Each one is packed by one of our volunteers so she'll pick out different selection of different toys or books or that sort of thing to go into each bag and with like a handwritten note to the child as well so it's really nice and I know she loves doing it, like, she's really keen on making sure that each bag is like the best thing ever for for each child. So what they get in there is kind of dependent on age so some of the older ones might include like a water bottle and a bracelet. Some of the younger ones are much more like they'll have a blanket and things like that. So it's kind of really personalised, and again, you can just order them for free on our website. We're also in the process of creating some really good links with different healthcare professionals, because our aim is to make sure that every child that's diagnosed gets one of these bags. So we're just looking at how it's best to do that and working with healthcare professionals feels like a really good way to get the word out there more so when kids come in for their appointments, or like it might be at the point of diagnosis, then there'll be made aware of it, and then you can get one delivered to the house, which you feel like is a really nice, that is obviously a really tough time that people are going through and it's just something that's brings a bit of a bit of a smile and also the stuff that we include in the bags, a lot of it is designed that it might be so we've got some like, you know, like the popper toys that basically a bit like bubble wrap, but like a bit more sturdy, things like that and then also, we've got some, like snakes and ladders, magnetic Snakes and Ladders, things like that, that if they are in hospital, things that they might want to use to kind of pass the time or just to reduce a bit of anxiety and that sort of thing.

Chandos:

It sounds like you've got a pretty because obviously we've spoken about like the family days, the brainy bags, we'll come on to the support for teens in a second. But it sounds like there's a lot of planning that's gone into delivering a service that's unique for each individual and allows children and young people to express themselves as well cos I think when you're going through a diagnosis or treatment, it kind of can feel overwhelming at times so obviously, that must be something that you guys try and do whenever you're working with a young person.

Amy Watts:

Yeah, definitely and I know we're going to talk about the teen service in a minute but that's definitely something that we try to think about what does each individual person need, because we know that everyone's so different and people are at different points in the journey. So we've the children, families team, we've really tried to think about what each individual needs and that's why we have a real crossover between children and families, then going into teens, then going into our young adults and there is some flexibility about where people feel like they fit within that so yeah, we really, we really do try to put the community first and they're always at the forefront of our mind when we're thinking about things we're going to introduce which really try to think about what the community want rather than just me and Jessie, feeling oh, this will be great. So yeah, it's definitely something we always try and think about.

Chandos:

And Jessie, I know that you're going to talk about the support for teens.

Jessie Poole:

Yeah, so we have a teens living with support Instagram and that's a very established group, in the sense of the group chat, they have the teenagers talk in it pretty much every single day, regular posts go out and that's really been built up by Lisa, who we work with on the C&F team, and then other people who have worked at the charity and that's a really, again, friendly and welcoming space and that's for people that are living with from 13 to 17 and obviously, because of that age bracket, that means that the teens can also come to family days with their family and they're also eligible for brainy bags as well so that's where you see the transition between children going through to teenagers. We also have it's brand new, a siblings group, so siblings of those who are living with and that's also for 13 to 17 and yeah, I guess both groups, the idea is to have regular posts about well being or anything that they might want to see some games and yeah, the group the group chat so they can all talk to each other and some nice friendships forming. We're also starting back up the teen online meetups so there's going to be one on the eighth of August and that'll be running from 6pm to 7pm. If anyone's interested in that for their teen, again, please drop us an email and that will just be a space where they can all chat to each other, do some quizzes and do some games. In the children and families service, obviously, so much of what we do is centred around supporting children and the teens but we also really do want to support parents as well, because obviously the services children and their families, not just parents, but grandparents, absolutely anyone relative if they need support, they need to talk, they're seeking information we are massively there for them as well. We speak to a lot of parents, a lot of grandparents, and people like that so we're definitely here to support them as well. The phone number, if you want to contact the children and families support line is 0808 800 0004.

Amy Watts:

Yeah, absolutely and I think what Jesse said about the support being available to parents as well, is a really good point, because we obviously we are part of the children, families team, but we work really closely with the adult side of things as well. So we do often have, like a combined approach if a parent calls into the adults team, and they're getting support with, say, counselling, or the benefits clinic or anything like that, that's more on the adult side of things but then in that conversation, they mentioned that they've got a child who also might need support, then we are then brought in and we kind of work all together just to make sure that everyone in that families getting what they need so yeah, it's definitely where we kind of sometimes it's hard to explain exactly what we support with because it's so dependent on what that person that's calling in or emailing in is asking of us because I know for example, Jessie went above and beyond doing loads of research on brain banks, which is something that doesn't come up that often but we're just always there to like, really dive into whatever people need from us.

Chandos:

I think that's make what makes it so special cos I think a lot of like the support that people will be getting from the hospital and stuff can't necessarily go into as much detail and is not as tailored as the support you guys can maybe offer. I think that's a really important thing to highlight so thank you both for joining me today.

Amy Watts:

Thank you.

Jessie Poole:

Thank you

Chandos:

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's 0808 800 0004, or visit thebraintumourcharity.org for more information on what supports available to you. Thanks again to Jessica and Amy for giving up their time to talk a bit more about the support that the Children and Family Service can offer and how you can get involved.

Sarah:

If you've enjoyed this episode, it would really help us if you could head on over to Apple podcast, Spotify or wherever you get your podcasts and leave us a review as it really helps podcasts like this to reach more people. Thank you