Dr Karen Gray records the reflections of the Lived Experience Panel members, who have been helping shape Pandemic & Beyond’s approach to research and public engagement. They discuss contributing to ongoing, urgent research initiatives and what lies ahead for creative research.
From its earliest moments, the Pandemic & Beyond team has benefitted from the skills and insight of our panel of lived experience advisors. They have shared their experiences, participated in workshops with researchers, advised our media team, produced artistic content, and given feedback on our films and website. Our panel are Ronald Amanze, Alexandra Kulanthai, James Oprey and Susanne Syme. You can find out more about them in the biographies below.
As our project nears its end, we asked them to share their thoughts on the project, their involvement in it, and on what should happen now.
What has it been like being part of Pandemic and Beyond?
An overarching impression for the group was of the sheer diversity of projects and research they have seen being undertaken, the amount of intellectual labour, and the multitude of collaborations involving diverse groups, individuals, and communities. Susanne noted also how everyone had seemed to be working together to find points of commonality, of shared experience and language. This in some ways mirrored panel members’ own journeys through the project.
Several of our panel described their sense of having been given an inside view into the research process, including all its stages and with all its rough edges. James remarked on how different and interesting this was to simply being presented with a polished product at the end.
Ronald told us how he had gained in confidence during his involvement. He had felt part of a team: “I didn’t have to struggle to be included, and that I found beautiful.”
Those members whose roles have involved shaping and advising on the Pandemic and Beyond films and commenting on the development of our website had been pleased to see researchers committed to delivering research projects with real and immediate benefits for individuals and communities. James noted how inspiring it had been in the films “to actually see participants taking parts in arts and creative activities and saying ‘this has kept me sane’.”
Our panel members spoke of quite direct and personal results of their involvement with the project. Alexandra is building on her Pandemic and Beyond experience, having recently taken on a role as mental health champion for her local council. Ronald, who has contributed his song-writing skills and ideas to the project, told us how this process has inspired him to “think more creatively.” He is also considering how he might now forge relationships with universities in his local area. Susanne is using what she has learned through the project to connect her into more nationally focused work to support those living in care or with frailty and dementia. She described her experience with Pandemic and Beyond as a part of a bigger “puzzle.” James noted his new-found (“eye-opener”) understanding of the value of the arts when it is social and shared, reflecting on how this has led him to think differently about his own life.
What should happen now with what has been learned?
“You’ve got the documentation, you’ve got the links, you’ve got the process from idea to making it all happen, to looking back on it and going ‘well, we could do it differently’ or ‘wouldn’t it be great if we’d done this as well’.” James described this resource, alongside the connections made between researchers, and their links with community partners, as the key postive outcomes of the project.
There is much work still to be done. “It needs to touch more people,” insisted Alexandra. Susanne agreed. For example, she would have liked to see more work tackling issues around ageism, and the experiences of those who were frail, elderly, or living with advanced dementia during the pandemic. Like Alexandra, her experience in care settings means she is acutely aware of how much residents there have missed of life during the pandemic, and how much they are still missing. She is actively looking to find ways now to bring the arts into those settings as another route through which to share the stories she has heard told through the research.
Our panel members are hopeful that lessons learned through research about the value of the arts and humanities will now be driven forwards; with the direct creative action and social connections born of isolation and crisis continuing to benefit individuals as they forge their lives post-pandemic: more “hope, and inspiration, and community!” as James termed it.
Ronald spoke clearly for all: “it’s like a new beginning, we need to continue to sow the seeds, to go out into different communities, to start new conversations.”
About the panel
Ronald Amanze is the founder of Talk Dementia, which has a social prescribing enterprise for well-being agenda and was originally supported and set up with the help of the Alzheimer’s Society (Dementia Voices). He is a Dementia Diarist with DEEP and an Ambassador for The Stroke Association. Ronald is passionate about better service provision for BAME communities in dementia services and for more involvement from BAME communities in dementia research. A music producer by background, he is also passionate about the role of the arts and creativity in improving quality of life and wellbeing.
Alexandra Kulanthai is an artist, singer (Member of Military Wives Choir North London) and an Indonesian traditional dancer; she works in Milman’s Resource Centre adult care setting for Harrow Council where she also leads activities for people living with dementia. Alexandra is a strong supporter of deaf communities and believes that learning BSL (British Sign Language) is very important for supporting these communities in this century and into the future.
James Oprey is a freelance filmmaker and producer. Working for both traditional TV/ news and programmes and on purely digital projects over the years has led to a wide range of work and experiences from filming in the Middle East to working with both animals and children! With a background in theatre and working as Resident Filmmaker at the RSC , the arts are a particular specialism, but interests in mental health, technology and various overlaps of these areas made involvement in the Pandemic and Beyond project a great opportunity.
Susanne Syme is a physiotherapist (GradDipPhys MCSP, with an MSc in Rehabilitation Studies) with a special interest in older adults. She has run her own rehabilitation business for 21 years, with an emphasis on falls prevention, dementia, frailty, stroke, Parkinson’s disease, evidence-based practice and individual’s lived experiences. During the pandemic she has worked in care homes focusing on keeping people active, physically, emotionally and socially.