NDAS22- Through the eyes of a Parent Carer

I was invited to speak at Edinburgh University at the Neurodevelopmental Disorders Annual Seminar (NDAS22) conference. The conference was wonderful. From start to finish, I was included and made to feel welcome. There was warmth in the room and a buzz of excitement. One of the things that really struck me about the day was how considerate the researchers in the room were and how they were keen to do right by their participants. 

I can see solutions for many of the issues we face and yet system deliveries often cut people with lived experience (like me) out of the conversation at the initial stage. This got me thinking, wouldn’t it be wonderful to normalize a grass roots approach to the culture of co-production in research? A system whereby people who know how, meet the minds of the people equipped to make it happen? A mutually beneficial exchange of knowledge resources.

When it was my turn to speak, I spoke about my experiences of co- production in the wider sense and then focused on two research case studies I had been involved in and how they made me feel; Genuine vs tokenistic co-production. I explained how co-production is a values-based approach. It is about creating a meaningful environment where everyone feels heard and valued. My role on the day was to offer insights as a parent carer representative. I was there as someone sitting on the other side of the research fence, offering a different viewpoint for consideration. But I also felt like I was a fly on the wall, peeping through a half-closed door. I was getting to see how the world of research worked from the inside. I left the conference feeling energized and inspired because I had learned a lot and this knowledge would be useful for my family. When I spoke, I felt heard. I know that my contribution to the day would have helped others reflect on their practice. It gave me hope and I found comfort in seeing firsthand the passion from people in the field, excitedly talking about their work and keen to fulfil their role to the best of their ability.

Next week, I will be posting a blog about being involved in tokenistic co-production research versus genuine co-production research and how they each made me feel. 

Author: emmapauley

Hello, My name is Emma Pauley and I am passionate about Co-Production. I am a parent, carer, artist, sister, friend, equality campaigner, and Social Innovation Architect Changemaker with a passion for equality, inclusion with a focus on ensuring carers voices are heard. I believe that when we all work together as equal partners the best solutions are found and real change happens. I believe that those who use services are best placed to help design what good support and good practice looks like. I believe in putting people at the heart of everything. My beautiful youngest little girl Millie was born with a very rare genetic condition called TUBA1a which means she lives with a range of complex health and care needs. This opened my eyes to the inequalities faced by disabled people and carers and because of this I am determined to ensure that we live in a more inclusive society.  I hope you can join me on this journey and help me in my quest to make the world a place where everyone can live a life where they are treated with dignity, fairness and respect. 

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