As a Charity we’re passionate about ensuring everybody affected by a brain tumour has access to the best treatment and care, so today we’re delighted to launch our Improving Brain Tumour Care surveys.
By taking part and sharing your experiences you’ll be helping to create a better understanding of what’s happening in brain tumour treatment and care across the UK. We’d like to hear from patients and their families about what was good and where improvements could be made. We’ll use the findings to work with hospitals to raise standards.
There are six surveys, each asking about different aspects of your experience at each step:
We ask that you choose the survey that’s most relevant to your current experience, but you can also complete surveys on other aspects of your treatment and care if you’d like to.
Why are these surveys important?
Currently brain tumour patients and their families aren’t well represented in national surveys . These surveys will capture detailed information about different stages of people’s experiences and give our community the opportunity to have their voices heard and help create lasting change.
By sharing your experiences you’ll be helping us identify where things are working well and where things need to change. If your care was good, we want to replicate this in other areas. If you’ve had a poor experience we want to understand why so we can improve things for other patients.
By taking part you’ll also be helping others affected by a brain tumour understand what treatment and care is like in centres across the UK, supporting them to make informed decisions about their care.
Being diagnosed with a brain tumour made me feel as if I had no voice initially, as you get lost in a sea of appointments, scans and anxiety. So, having a chance to talk about my own experiences was extremely helpful for my emotional recovery. Also being part of something bigger than myself and potentially improving other people’s treatment and care was very important to me.
How will the information help?
We’ll use the information to work with centres to improve treatment and care for everybody affected by a brain tumour. Data that is shared will be anonymised.
The survey feedback is also being used by the Tessa Jowell Centres of Excellence Programme. Centres can apply for accreditation as being leaders in the field and the survey feedback will be used as part of this process.
Alongside asking about your health care experiences, the surveys include some optional demographic questions. We’re asking these questions to help us understand if there are any inequalities in accessing treatment and care. By having a clear understanding of different experiences we can help address any issues that are identified by working with partners and healthcare providers.
I found taking part in the surveys helpful because knowing that my responses can help other patients to make positive, informed decisions about their treatment and care is absolutely fantastic.
I think it’s really important for as many people as possible to get involved, complete these surveys and share their experiences because more voices allow for a better understanding of key brain tumour issues.