Let's Talk About Brain Tumours

Episode 2 - Spotlight on Best Care Everywhere

• The Brain Tumour Charity • Episode 2

Share episode

In the first of our 'Spotlight' episodes, Chandos talks to Emma Wood who is the Involvement and Impact Manager at The Brain Tumour Charity.

They discuss why The Charity has launched "Best Care Everywhere" - its new strategy to ensure people get the best treatment and care possible wherever they are in the UK - and how you can get involved.

To take part in the Improving Care Today Surveys  https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/improving-brain-tumour-care-surveys/

You can find out more about the Tessa Jowell Centres of Excellence on our website  https://www.thebraintumourcharity.org/media-centre/news/research-news/announcing-tessa-jowell-centres-excellence/

To find out more about the Involvement Network email involvement@thebraintumourcharity.org or visit our website https://www.thebraintumourcharity.org/get-involved/volunteering/use-your-experience/

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 first in Spotlight Series for the brain tumour charity. Each episode is dedicated to looking at a different member of staff's role within the organisation, and the work that they're doing along with their colleagues to help us find a cure for brain tumours. Because as we know, brain tumours have a massive impact on the day to day life of people. And not just them, but also the people that surround them. Each episode will explore the challenges faced when trying to find a cure, but also what we can do. And what we can highlight this working well is estimated at 12,071 people are diagnosed each year with a brain tumour, this includes 666 children aged between zero and 19 years old. 2071 people over 365 days of the year means that 33 people are diagnosed each day,

Emma:

everybody's voice matters, we're only going to be able to create change, we're working together. And I think, you know, everybody has the power to kind of feed into that by sharing their experiences, whether they're good or bad, we need to hear about them. So we can improve things for everybody affected by brain tumour.

Chandos:

My guest today is Emma wood. And we'll be discussing best care everywhere and what the charity is doing to promote quality within the sector, and within brain tumour research and delivery of care to people who have a diagnosis. So Emma, can you tell us a bit about your role and what you do?

Emma:

Thanks, Chandos Hi, everyone. Um, yeah, so I'm Emma word, and I'm the involvement and Impact Manager at the brain tumour charity. So that means I work alongside the rest of the involvement team, looking at all the different ways that our community can get involved and help shape our work, as well as looking at some of our impact projects as well, such as measuring the impact of our support services, and projects like our improvement brain tumour care surveys.

Chandos:

So could you tell me a bit about what categories and what the charity is trying to do around that?

Emma:

Yeah, absolutely. So we know that currently that everybody diagnosed with a brain tumour across the UK isn't necessarily getting access to the best standards of care, we know that there are differences between different areas and between those who have a low grade or a low grade brain tumour. And that's something that we really as a charity, we really want to change, we, we believe that everybody has the right to the best treatment and care, no matter where they live, or what type of brain tumour that they have. We know that there's some excellent care going on out there. But we also know that there are some gaps and what we want to do, and what the best care everywhere is all about is about closing those gaps. So best care everywhere was part of our new strategy or new charity strategy. And it's a big commitment, because we want to drive forward change to improve standards of care across the whole of the UK. And that covers all aspects of treatment and care. So from, you know, from diagnosis all the way through different types of treatment, as well as rehab, ongoing support as well as palliative and end of life care, too. So any, any aspect of treatment and care, we want to raise standards across the board.

Chandos:

And before we started recording, you told me about the improving brain tumour care surveys, what do they look like? And what do they mean for people who are asking to complete them? Yeah, so

Emma:

the improved brain tumour care surveys are a series of online surveys that people can take via our website, and they are really going to help us understand what's happening nationally, at a centre by centre level, so highlighting what's going well, perhaps what's not going so well, so that we can really use that information to drive forward change. And we'll do that by working with centres to kind of raise those standards and highlight what those issues are share best practice, but also for the community to have input into things as well, because we want to understand what the issues are and work with the community on solutions that are going to work for them. So each of the surveys focuses on a different element of treatment and care. And it's for everybody affected by a brain tumour, whether you're a carer or a loved one. There's a whole series of surveys and we asked people to complete the one that's most relevant to them, and carers can complete them on their loved ones behalf or there is a dedicated carers one as well.

Chandos:

And for how long do you ask people to complete the surveys? Is it on a one time basis? Was it long term?

Emma:

Yeah, so the surveys are ongoing. And what we're asking is that people complete the survey that's most relevant to the experience that they're having at the moment. Because what we want to do is capture a picture of what's happening now in treatment and care. And people can retrospectively fill fill in surveys for previous experiences if they want to. But we hope that people will fill in experiences as they go through different stages and having different treatment or whether that's ongoing support, so that we can really understand what's happening as it happens, and then work with centres to raise cancer care and improve things for everybody affected by a brain tumour

Chandos:

And how is the data collected and used to inform practice? I know that you've done some work with the Tessa Giles Centres of Excellence.

Emma:

Yeah, yeah. So, um, data is collected through our, the online surveys via our website. And obviously, it's stored securely on our systems. And there's also links within our Brian our brain tumour app as well. And we're going to be using that information to inform practice and as you've said, you know, work with the Tesla jail sentence excellence programme. So that is a national programme that's looking at creating this network of excellence across the UK, which is all about sharing best practice, and really highlighting where their excellent care is, is happening. So there's nine centres that have been given Tessa gel accreditation, and other centres will be applying for that. And the improving brain tumour care surveys have really been a core part of that assessment process. So making sure that patients voices are really heard, and they use to create change. So it was quite a rigorous process that centres had to go through. And again, you know, some of the centres that missed out missed out by a margin, but it's really highlighted the areas that they need to work on in terms of improvement. So it's been really positive, but the surveys will continue to feed into that piece of work. And we'll be working closely with the test gel centre of excellence through the test gel Academy as well, which is all about kind of sharing that best practice and learning as well. So yeah, we're we're working with clinicians through the test gelatins of excellence programme, we'll also be making sure that our community has the knowledge at their fingertips so that, you know, people are sharing this information, we want to make sure that it's getting out there to everybody in the community, so that people can make decisions that are right for them. And they can really understand you know, where to go and what's gonna be best for them. This area's are based on the national brain tumour standard, which is all about setting out the best standard of care that people should expect. And again, we've got a step by step guide at the charity, which talks people through that and kind of each stage questions to ask information that might be helpful. And it's,

Chandos:

I guess, it's empowering people who've got a lived experience with a brain tumour to take action and to be a part of that process.

Emma:

Absolutely. Like everybody's voice matters, we're only going to be able to create change or working together. And I think, you know, everybody has the power to kind of feed into that by sharing their experiences, whether they're good or bad, and we need to hear about them. So we can improve things for everybody affected by a brain tumour.

Chandos:

And I know that it's, it's early on in the process of the surveys and stuff like that, but if you collected any data already, that is helping to inform practice and inform the work clinicians are doing.

Emma:

Yeah, absolutely. So as it as you know, it's fed into the accreditation process. So really helping centres and using that information to kind of improve things at that centre level. But also, it's really flagged some issues for us as well, you know, things like around signposting so patient not all patients being signposted to specific information. So, again, we're working with clinicians, but we're also working with our community to say, what was your experience? Tell us? So we've been wanting some focus groups, just to try and unpick that a bit more and think about what would a solution look like? What's going to work for our community? And the same with holistic needs assessment? So we asked a question about holistic needs assessments, which are support plans. And the idea of those is to support people with their ongoing care. Now, a lot of people that responded in the survey said that they weren't having those. They didn't have a plan in place that was working. But a lot of centres said that they were doing these assessments. So there's clearly a kind of like a disconnect there. So it's looking around the communication, what are the tools and working with our community to look at what might be helpful? So we're working on looking at creating something through our Brian app to support people in their experience?

Chandos:

And how can people support the work the research, and there's going into developing best care everywhere?

Emma:

Yeah, we really encourage everybody affected by a brain tumour, you know, wherever they live, to take part in the surveys, share your experience, and help us create change together. Because everybody's voice matters. And it's really important that we hear lots of experiences, so that we can really understand what's happening at a centre by centre level, because there isn't that national picture. So that's what we want to create. So yeah, by taking part in the surveys, you'll be helping to kind of feed into that, and helping raise standards of care for everybody.

Chandos:

And finally, where do people go, if they want to find out more about the work you're doing? And the team is doing?

Emma:

Yeah, of course. So after surveys are available online via our website, so brain tumour charity.org, forward slash care surveys, and that will take you through to the surveys webpage, where you can choose which survey is most relevant to you. And again, we'd encourage people to go back, you know, they're having radiotherapy and then they later on, you know that they're having just ongoing scans, please do go back and fill in a different survey about your experience because we break it down at each step. Also download in the Brian app, that's another great way to kind of feed into research and also to kind of support you step by step as well. There's loads of information and useful resources on there. And obviously, you can use it to record your appointments or treatments and how you're feeling. And then finally, we've also got an involvement network at the charity so if people are particularly interested in using Their experiences to help us create new solutions and work with us. We're really keen to work with our community so you can get in touch with our team at involvement at the brain tumour. charity.org. Amazing work. Thank you for joining me today, Emma. Oh, thank you so much for having me. jandals It's a pleasure. And yeah, if anyone's got any questions, then please do get in touch and we'd be very happy to answer anything.

Chandos:

As I mentioned, there's loads of ways that you can get involved with the charity and the work they're doing. If you want more information on these details, then visit the brain tumour charity.org forward slash get support. And this is a signposting page where you can get all the information you might need about the work that charity is doing and how they can help you, but also what you might be able to do to help them such as showing you information, or fundraising for the charity. Thanks again for listening and

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