Too many people are finding out they have chronic kidney disease after their initial diagnosis was first recorded, robbing them of time when they could have been making lifestyle changes to help protect and maintain their kidney function.
We are shocked that one in 10 people are finding out that they have CKD on the NHS App.
Will you add your voice to our campaign to stop people #FallingThroughTheGApp?
We’ve already heard from over 1,300 people who shared their diagnosis experiences in October through our patient survey. We’ve just published the findings of this in our Falling through the G-App report. We want to ensure people are not finding out they have CKD by accident and we want people to be given the right information, advice and support to understand what their new diagnosis means for them.
If you’ve had a poor experience of diagnosis, or feel your CKD was not taken seriously by a healthcare professional, we want to hear from you.
Please send us your experiences as WhatsApp voice notes. We’ll share these messages with policy and decision makers, politicians, and feature them in our marketing, communications and fundraising materials (including our website, social media, emails and reports).
Your voice has power and will help others to understand the fact that kidney disease is not taken seriously and more needs to be done to raise awareness of the impact that it has on your life.
To send a voice note on WhatsApp, add 07591 952555 and press the microphone icon in the bottom right of your phone screen to start recording.
If you do not have WhatsApp, please share your story using this form instead. Please don't call us and leave us a voice mail as we are unable to store these and your message may be lost!
Ideally between around 30-60 seconds, and no longer than 3 minutes.
If you don’t have WhatsApp you can share your story here instead.
Of course, feel free to send us more than one voice note if you have different experiences to share with us.
If you feel comfortable to share a first name at the end of your voice note please do so, but you don’t have to use a real name, a pseudonym is fine. Having a name to be able to identify you means that if we need to contact you we know how to address you. But you don’t need to leave a name if you prefer not to.
We will make a record of your voice note but this will not be linked to you as an individual. We may transcribe your words and use your words or recording in our marketing, communications or fundraising materials or to share with MPs and policy/decision makers to help influence change.
We will store your records/transcript of your recording securely and we will delete it after 12 months.
Just share in your own words your experiences of being diagnosed with CKD and how this has impacted on your life. Please remember not to name any individuals, GPs or medical centres/practices.