What We Need Now

What matters to people for health and care, during COVID-19 and beyond

What We Know Now

What We Need Now follows the publication of an earlier report, What We Know Now. This second report was a rapid response review of 11 National Voices’ members surveys, which gave us compelling insight into the experiences of people using health and care services during the first wave of COVID-19. It was drawn from over 66,000 experiences. 

Our Covid Voices

At National Voices, we knew we needed to capture the experiences of people who faced ongoing health and care needs throughout the first phase of the pandemic. With the relentless focus by the media, NHS and government on people needing COVID-19 care, we had a sense that the lives of people living with other health conditions were at risk of being forgotten. We felt that the experiences of people whose health, care and lives had been most disrupted, needed to be heard in the rooms where decisions were being made.

That is why we launched OurCOVIDVoices – a platform built to collect first-person accounts of living through the COVID-19 pandemic in 2020. We wanted to share with the world how people with long-term conditions, disabilities and other health and care needs were living during the pandemic. We also wanted to use the insight people gave us to influence decision-makers to do better for them.  

What We Need Now is drawn from the OurCOVIDVoices platform, and the powerful, important and personal experiences that people contributed. 

Although the OurCOVIDVoices platform is no longer live, the data is available upon request.

I Statements

Our report, What We Need Now, features some co-produced recommendations as to how people would like to be treated, based on the insights gathered from the OurCOVIDVoices platform. 

From these recommendations, we facilitated the creation of a set of ‘I Statements’. These are simple expressions of how patients would like to be treated which are presented as a straightforward, practical guide for application in health and care settings. 

Acknowledgements

We would like to thank Chloe Reeves, who researched and wrote our report. 

Paul Corrigan inspired the idea of refreshing our original I Statements, for which we offer a heartfelt thanks.  

The OurCOVIDVoices platform was developed by AYUP, a tech-for-good digital agency in Leeds. We would like to thank Mark Brown from Social Spider for his generous input, building on work the Hearing Voices Network had already done around story telling.  

The I Statements were brought to life by illustrations created by Sandra Howgate.  

We would like to thank communications consultant Dan Watson for his support in the development and running of OurCOVIDVoices. We also had support from a volunteer filmmaker, Adam Perry, and a volunteer marketer, Maya Anayokar – thank you.  

Tash Howard volunteered to help run the focus groups and to make sense of what we heard. 

Sam Thomas volunteered some time to help us understand what we had started.  

Laura Porro was enabled by her employer, the social enterprise PPL, to give two days a week to this project pro bono.  We could not have done this work without her steady, calm and brilliantly organised leadership. We are so grateful to all of you.  

Thank you to the Health Foundation, without whose financial support this project would not have been possible.  

Finally, we want to thank all the people who told their stories on OurCOVIDVoices and who contributed to our focus groups. Your generosity of spirit has shaped the way we see the world already and will do so for months and years to come. We will never forget what you told us.