Join us as we talk about all things brain tumours with those who have been diagnosed, their friends, parents, partners and children as well as with researchers, fundraisers and advocates. Find out how The Brain Tumour Charity is working to improve outcomes for those who are diagnosed with this unforgiving disease.
Please Note: We recognise that everyone's experience's are unique. Our guests are sharing their own personal experiences of diagnosis, treatment and care. These may differ from yours or those of your loved one.
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Today, Chandos talks to Support Manager Beth Ryall, about the support available at The Brain Tumour Charity for people who are experiencing difficulties with their mental health following a brain tumour diagnosis.
If you or someone you know needs a listening ear, you can contact our Support Team by calling 0808 800 0004, by using the web chat on our website or by emailing support@thebraintumourcharity.org
If you have any questions about this episode of the podcast, email podcast@thebraintumourcharity.org
Chandos:
Music.
Sarah:
Welcome to Let's Talk about brain tumors. The podcast where we'll be talking to people who've been affected by a brain tumor diagnosis, either their own diagnosis or the diagnosis of a loved one. We'll also be sharing news and updates in The Brain Tumour Charity about what we're doing to hale the harm and double survival.
Chandos:
So Beth, do you want to tell us a bit about yourself and what your role is at the charity? My
Unknown:
name is Beth, so I'm the Digital Support Manager at the brain tumor charity. So I work within the support team, and I look after the support pages on the website, and also things like our online support groups and any other sort of digital products that the support team are doing
Chandos:
amazing. Thank you for joining us today to talk about I know we're going to focus on the mental health side of support that the charity offers. So can you provide an overview of the mental health support services offered by the charity for people who are affected by brain tumor and what aspects of mental health do these services encompass?
Unknown:
Yeah so, when someone's diagnosed with a brain tumor, it can be very difficult for them and their loved ones, so the initial news could be a shock, but then also the treatment and the impact of the diagnosis on them as a person can also impact someone's mental health. So they might feel depressed or lonely or isolated, as they've had to take a break from things that they would normally of done, like work and driving. People might have anxiety or scanxiety, which is a type of anxiety that people feel related to their scans. There is another great podcast about that on here, which I think you're part of as well. Then some people may have personality changes, either as a result of the tumour itself, medication, treatment, or even the mental health impact of the diagnosis and The Brain Tumor Charity, while not a specific mental health service, do offer a range of services that may be beneficial. So we have a section on our website about mental health. There's lots of information and resources on there. We also have our support teams who can be contacted through the support line, email and live chat. They're not mental health professionals, but happy to be a listening ear for those who need to talk. They're also great at answering questions and letting people know how they can access more help, and they're happy to look for organisations that can offer additional support. We also have our online support groups, so they're a great place to connect with others in a similar situation, and this peer support is available 24 hours a day, so it can be really great for that feeling of loneliness that some people feel. And there's also often discussions in the group about things like scanxiety, and everyone's really supportive of each other. Then, as we know, it can be difficult and sometimes expensive to access counseling. So we have our free counseling service. So this is open to anyone over the age of 18 living in the UK who has a brain tumour diagnosis themselves, or who has a loved one with a diagnosis, and people were able to access up to eight free sessions through the service,
Chandos:
and recognizing kind of the challenges that you've you've spoken about there, like the different things that impact on someone when they've been affected by a brain tumour, in terms of the mental health and the anxiety that's caused by different things that might happen, Recognizing these challenges in these crisis how does the charity support someone who is in in kind of a moment of crisis where things aren't going particularly well, when maybe their mental health has taken a significant decline? Because I know you just spent a bit of time there talking about the kind of the counseling and stuff, so that's more like long term sort of planning and working with people over a period of time, if they are in crisis right now, how does the charity support them and getting the right support at that moment?
Unknown:
So we'd always advise people to let their medical team know, so whether that's their GP or their medical team, through their through their hospital, so there may be things that they can do in order to possibly medicate or to signpost to organizations that could be helpful, and they can refer those them into those organizations through the medical team. It may be that they can get referrals to a clinical psychologist to actually pinpoint exactly what is causing the mental health issue. If someone's specifically in crisis at that time, if we thought that there was something that we needed to do, then we would help them to access that support. But if we would, we would advise people to contact local mental health organizations, contact Samaritans if they needed to talk, or contact 999 if they needed emergency help.
Chandos:
Thank you for sharing that. There'll be some information in the show notes of this episode on support that's available to you in your local area and nationally. You can also use the hub of hope website, which is a free database where you can put in your postcode and find support in your local area, both private and NHS provision. Everyone's journey is going to be different when they're living with the brain tumor, and we know that diagnosis, there's so many different types of brain tumor and the way they impact on people. Or how does the charity tailor mental health support to individual needs and circumstances and those seeking assistance?
Unknown:
So our frontline support team is divided into a number of different teams, so there's three specific teams. So we've got a children and families team who look after those with a child under the age of 18 with a diagnosis. We've got a young adult team who looks at after those 16 to 30, and we've got an adults team, so that's for those either with a diagnosis themselves or with a loved one over the age of 30 with a diagnosis. So each of our teams offer bespoke services. They're an expert in their demographic area, and they will offer support and signpost to organisations that will cater for the groups that they look after. So as part of our peer support, we have a range of different online support groups, so some of those are divided by the person's relationship to the brain tumor. So whether they're a parent, whether they're living with a brain tumor themselves, whether they're a carer, and we do have a couple of brain tumour specific ones that helps people to really like, connect with people, make those peer connections, be able to ask questions, feel less isolated, find people in other similar situations to them, and be able to have that openness, have those open conversations, to not feel that they Can't say because they don't want to upset someone else that's maybe in a slightly different situation. Everyone in those groups are in in a similar situation. So that really helps to bring the peer support there.
Chandos:
And how does the charity collaborate with healthcare professionals to integrate mental health support into the overall care planning for individuals who are living with the brain tumor. So you've we've spoken about kind of like the impact of being diagnosed and what happens when you after care. How are you working with healthcare professionals to ensure that someone who is living with a brain tumor gets the right support, not just on a one off occasion, but throughout their care?
Unknown:
Yeah. So we do have a healthcare engagement team who look to make those connections with healthcare professionals who work with those with brain tumours.
Chandos:
Thank you, Beth for joining me today to talk about the impact of mental health on people's journeys with the diagnosis of a brain tumor. It's been really insightful to hear what the support that the charity offers for those who are struggling with their mental health
Unknown:
Thank you, Chandos. It's been really nice talking to you as well. If you've been affected by
Chandos:
anything discussed in today's episode, you can call the Samaritans for free, 24 hours a day on 116123, and whether you've been affected by brain tumor or a family member or friend has the brain tumor charity, here's help. Call 0808 800 0004 that's oh 0808 800 004 or visit the brain tumor charity.org for further information. Thanks again for
Sarah:
If you've enjoyed this episode, it would really help us listening. if you could head on over to Apple podcast Spotify, or wherever you get your podcast, and leave us a review, as it really helps podcasts like this to reach more people. Thank you.
