On Friday 29 May 2020 our Experts by Experience (EBE) community took over our blog and social media channels to share #EBE_Voices during the Covid-19 pandemic. In this blog, EBE Network member Fiona explores ways of making the voice of lived experience heard during the lockdown.
What does co-production look like in a time of crisis?
By Fiona, Experts by Experience Network Member
The current lockdown and health crisis presents new challenges for those of us with complex needs more so than in normal times.
Accessibility is a challenge: there is a whole swathe of the country that now find themselves cut off from the world and access to help in this digital age.
Many of the older generation find new technologies difficult to get to grips with, but we also need to be mindful that having access to technology to use websites to keep us connected is also trickier for people living with multiple and complex needs. Not everyone has a smartphone, or if they do perhaps won’t have access to much data or Wi-Fi. The places where you could go to get connected are now all closed.
It’s important to realise that we still need to embrace the non-digital ways of communication – we need to include those excluded from technology and see that this is not the only arena for connecting. For example, one of my peers was voicing his frustrations that when watching the BBC any information/helplines are all website based. He has no internet and a phone that only calls and texts. I offer support where I can, but under those frustrations, he can’t be the only one.
At the same time, we don’t want to lose the gains we have made – if services have offered themselves digitally while all this has been going on and it has worked for some people then they need to think about continuing it. Some people cannot physically get to services and have therefore been excluded from accessing them in the past– now they might have a way of being included.
Fulfilling Lives Newcastle Gateshead have kept up a sense of community I feel, with regular calls and texts from the co-production team Lou and Shaun, and also regular emails from the system change lead Claude offering ways of engaging. I think this is an important means of outreach and keeping connections with the vulnerable.
As an Expert by Experience, I’ve been lucky enough to be involved with interviews for student nursing courses for the last few months. Post-lockdown I’ve still managed to be involved by joining in the interviews on Skype or Zoom rather than face to face. Doing a blog like this is a tool where my voice can still be heard and can be seen by the people who need to see it – it’s rich, it’s a powerful testimony.
Contributions to newsletters, journals, newspapers (which can be sent by post to those not digitally connected), phone conversations, video conferences and connections on social media are all ways that are being utilised to keep that voice of lived experience going – and keeping us involved in co-production.