Let's Talk About Brain Tumours

Episode 23 - Spotlight on Improving Brain Tumour Care

• The Brain Tumour Charity • Episode 23

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In this episode, senior involvement and impact manager Shannon Winslade joins Chandos to talk about how you can help us to improve the treatment and care of people diagnosed with a brain tumour.  Shannon spoke about the importance of getting our community to share their experiences both good and bad so we can find out where the gaps in care are, what people's experiences are like in different treatment centres around the country and how we use this information to provide treatment centres essential insights into their patient's experiences and how they can make improvements.

Some of you may have already completed the surveys when we ran them previously if you have had further treatment, at a different stage or experienced any change from the last time you took part you can still participate.

You can find more information about the Improving Brain Tumour Surveys or take part in the surveys on our website here

If you have any questions or would like to find out more about our Involvement Network you can email Shannon and the rest of the Involvement team by emailing involvement@thebraintumourcharity.org

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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:

Hi, everyone, and welcome back to the brain tumour charity podcast, in today's episode, I'll be sitting down with Shannon, talking about the role of improving care surveys, and the work these are doing to help improve the quality of care and support that people who are living with a brain tumour can expect today. So Shannon, can you tell us a bit about yourself and what your role is?

Shannon:

Yeah, sure. So I'm the senior involvement and impact officer at the brain tumour charity. So the main part of my role is just ensuring that we have the voice of our community kind of at the heart of everything we do at the charity. So it's ensuring that they can feed into all of our projects and our service development as well as potential researcher that we want to fund. That's the involvement side of it. But that also feeds into the impact side. So we tried to measure kind of the impact we're having on all those that we connect with, with our support. And also with improving kind of brain tumour care and treatment, we try and understand what's going on in the community. And we can report back on that impact to hopefully see the improvements and changes.

Chandos:

And so the people that are listening might have heard of the improving care surveys, what are they and what do they

Shannon:

So they really aim to show where the differences of what are they aimed to do. care are across the UK. So unfortunately, we know that there are differences that people experience, they might have access to different care depending on where they live. And that's often kind of called a postcode lottery, which of course, we don't want anyone to experience when they sadly received that diagnosis. So the surveys have been designed to map different areas of care that you would typically go through, if you or your loved one received a brain tumour diagnosis. And from those surveys, we can measure all the differences that are happening across care and then produce almost a national report. So we can show where there is national kind of an average and where particular centres might be underperforming, or hopefully over performing. So there's currently five surveys. The first one is the diagnosis survey, that is, when you would first get diagnosed, you can kind of share more about that diagnosis experience, how long it took for you to get diagnosed, who told you you had a brain tumour and things like that, so we can understand almost the pathway that someone would go through. And then it goes through different surveys about your treatment. So it could be following surgery, following radio and chemotherapy, or just living with a brain tumour, so someone who might not be under active treatment, but they're still kind of living with the effects and trying to understand the impact on their quality of life. And then the final survey is on palliative and end of life care. So what we'd encourage people to do when completing the survey is to complete the survey most relevant to their current experience. So then we have a really recent idea and understanding of what is going on across the UK with regards to care for brain tumours.

Chandos:

And how you mentioned that briefly about some of the kind of the ways that you're the things that you find out and you learn, used influenced practice and policy? How have these findings helped significantly improve things moving forward? Is there been any major changes or major kind of findings that have helped shape things?

Shannon:

Yeah. Which is really great. When you ask people to, you know, surveys and for someone to share their time, I think it's really important that we can feedback on the fact they've actually been a voice for change. And I think that's really powerful. And I'm really pleased that we've seen some progress already, just from our 2021 report, which went out at the end of last year, which had about around I think, nearly 1500 responses of anyone treated within two years. And what we saw so a main part of the surveys, the findings are used towards going to the Tessa Jowell centres of excellence. So this is when centres can apply to receive accreditation when they have you know, reaching those standards of care and around 30 centres, I think have applied and 17 centres have received Centres of Excellence accreditation, so from the survey findings and the application of the centre itself, we could kind of confirm what they're saying about their standards of care by the patient voice so that patient voice is really strong to ensure they get that Centre of Excellence and that doesn't mean that they continue having that Centre of Excellence they will have to reapply and get more feedback. So it's ensuring that we can make sure that this is still continuing But one that I wanted to highlight as well is that we've seen improvements at the centre level at particular hospitals, where from our findings where they might have been underperforming and not reaching the national average, they've actually used it as a bit of a business case. So that would mean that they've applied for more funding. And they can confirm that they need, for example, more clinical nurse specialists. So this was an area that we saw that not everybody had a good access to a CNS, I think it was like 40% don't have a good good access to a clinical nurse specialist. And that really has a knock on effect to whether they're offered a support plan, whether they have anyone to make contact with when they have any concerns. And there are some centres that have now recruited more clinical nurse specialists to address that barrier that came out in the surveys. And I think the more centres that use these surveys, they'll only see benefits at their centre level. And hopefully that can roll out more nationally.

Chandos:

It's about like looking at the holistic side of things and saying, Yeah, you can improve, but you're doing really good and other aspects and really highlighting that, I guess

Shannon:

Yeah completely, and I think holistic is the right word to describe it. I think we often hear from our community that they're more than just a patient, it's not just is there a person and it's about every aspect and impact that has on their life. And it's bringing in the psychological impact and the impact that might have on their mental health, their social impact. So how it can impact them getting back into school work, or education, and then the biological impact of home having a brain tumour, all of that together means that medical centres really need to look at the person as a whole. And there are areas where we really want to celebrate that they're doing, you know, an extraordinary job and rehabilitation. That doesn't mean that perfect, I don't think any set the centre could say that they're perfect, but they might be doing a really good job there, but not as good when you first receive that diagnosis. And what we hope is to bring all the kinds of centres together to share these learnings and see what is working where and how can we make everybody have that same access.

Chandos:

And you mentioned earlier that the first report is now live. Is this something that the charity is new to doing or what's the hope for the future with with the improving care surveys.

Shannon:

So the hope is, is that we continue producing yearly reports, I think this isn't something that we want to just report on once and continue. We've always done kind of impact surveys and patient experience surveys. But these were the first that really matched the adult pathway from when someone's first diagnosed throughout their whole treatment. So we're really looking to always have these surveys going through a period of kind of data collection. So this is where we've just started at the moment to go through further 2022 report that we do kind of a summary of data collection. And then we can report on the impact and also compared to previous years. So we can hopefully show in numbers that improvement. And going forward. We are hoping to launch a paediatric version of these surveys in the autumn. So currently, we have the adult surveys, they're doing well they're making changes, but the paediatric pathway is very different. So we want to make sure that we don't just apply the same surveys to the paediatric voice that we actually tailor them to their experience as well. So we're currently going through the kind of design of those surveys. So but by the end of this year, hopefully we'll have an adult and paediatric version that people can complete. So we're hearing from everybody who's affected, whether that's that their own diagnosis or their loved ones.

Chandos:

And I guess, obviously it sounds like these surveys are quite holistic and are a unique individual. But it comes together to create that collective voice into like, collective rationale that needs, we need to do more, or we could be doing things better, or what was working really well. How do you use all those different stories in a collective way?

Shannon:

Yeah, that's a really good question. So we have a really good data science team that helped with kind of the data, all those numbers to create them together and show all of the kinds of areas of significance. But we also have options for people to share qualitative feedback. So that means that they can share their own voice. And we spend a lot of time going through every single comment and bringing out these key themes, and ensuring that what people are saying is matching on and you'll find that nobody's alone in this and in Saudi when people do for their loan, you'll find that there's so many other people that are experiencing the same and it's how do we, like you say ramp up that collective voice to people know that they're part of a bigger community and that they can access support from us when that's right for them. And I think also it's really important to highlight that the best way for these surveys to be completed is To share pay for people to share their own story, and kind of the power of the community and the voice of the community really drives the surveys being completed and then drives change. So we're putting really all of the control on to the community to say what needs to change, and empowering them to take control back. Because I think often you can feel it, you lose control, when you first receive that diagnosis, and it's actually enabling them to have the power to share where their care is going wrong and lead to change with that.

Chandos:

And that's a really nice point, it's I think it refers back to a lot of what the previous guests have said, like, it's about giving the people with lived experience of voice in this, not just saying, we know what's best, or what policy we should be doing based on what our assumptions aren't really given that that power back to people who've got a lived experience, whether it's themselves with a brain tumour or a family member or friend. So how can people get involved? If they're listening to this podcast episode and they think I'd actually like to share my story or want to be a part of the service. How do they do that?

Shannon:

Yeah, of course, I'd say there's like three main ways to get involved. The first one, which is probably the obvious one is completing the surveys, if you haven't, and that is completing them about a recent experience. So it might be that something's changed within someone's experience, and they want to either re complete the surveys to represent that there's been a change, or you can complete the surveys retrospectively. So that means something could have happened last year, and you weren't in the place to complete the survey. And you can now just enter that day and go back and complete that. So that's one way to do it. And the surveys, if you get halfway through and you're like, you know, I want to break and I don't want to do this, we've got new survey software, which means that it will remember your, I'm not sure on the technical side of it, but like your URL or your location. So when you click on that link, again, it will take you right back to where you were when you started it. So you don't have to repeat any of the information. So one way is definitely to complete the surveys. And if you want to complete the survey on behalf of a loved one who might have a diagnosis, you can also do that. So it might be that your loved one isn't ready or wanting to complete that survey, you can also do that on behalf of them. The second way is to share the survey. So we will be doing a really big promotional push about all the surveys. And we'd really encourage people to share because you may not know how many people you're connected to online who also has experience of a brain tumour. So anything we can do to spread that word and amp up that community voice is really important. And if you want to be part of any of the promotional tools for the surveys that might be showing your own experience of care whether it'd be good or bad care, you can email involvement@braintumourcharity.org. And we'll also be in contact to kind of support you sharing that story. And then the third way is also to let your medical team know about the surveys. So we have an incredible support from all of the hospitals currently using the surveys as their patient kind of experience tool. And we have we know a lot of people have embedded it into their centres because we produce national reports, but also centre reports for all of the different neuroscience centres. So if you're under active treatment, and you want to let them know that you've completed these surveys and encourage them to do the same, by sharing it to their patients, that would be great. I would add on that, that all the information we give back to any centres is completely anonymous. So there will be no connection between what you say and what the medical centres see. So I appreciate that can feel a little bit different, like sharing direct feedback if you're under current care. But yeah, anything is anonymized if we share that back to the centres.

Chandos:

Thank you so much for joining me today Shannon it's been really insightful to hear about the surveys and what's going on.

Shannon:

Thank you for having me.

Chandos:

Thanks for listening to this episode of the brain tumour charity podcast. I hope you find it helpful. Whether you've been diagnosed with a brain tumour or a family member or friend has the charity are here to help. Call 0808 800 0004 That's 0808 800 0004 If you need help or support, you can also visit the braintumourcharity.org For further information. Have a great day.

Sarah:

We hope you've 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 or wherever you get your podcasts so we can reach more people and raise more awareness