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The Power Of Lived Experience: A Catalyst For Change

Around 200 unpaid carers and support organisations gathered at Easterbrook Hall on 10th October for Dumfries and Galloway’s second unpaid carers conference. The event, organised by Care Training and Consultancy CIC (CTC), and supported by around 30 other agencies and organisations, put the lived experience of unpaid carers centre stage as part of their endeavours to listen, understand and champion the needs of unpaid carers. By bringing unpaid carers, health and social care professionals and other support organisations together, the event helped to increase dialogue, understand needs and constraints, signpost information, advice and support and to learn from those with lived experience as an unpaid carer. Most importantly, it was a catalyst for collaboration and change.

Julie White, CEO, NHS Dumfries and Galloway formally welcomed delegates and colleagues to the event and reflected on her own personal experience as an unpaid carer.

Unlike most conferences, the keynote speaker session was replaced with a live performance that truly put the lived experience of unpaid carers centre stage. The play entitled ‘On Our Street’ was commissioned by CTC to portray the lived experience of unpaid carers in Dumfries and Galloway. The script was written by Emma Forsyth as part of a partnership project with unpaid carers, CTC and Up Yer Airts (part of Dumfries & Galloway Arts Festival).

Crucially it was inspired and informed by unpaid carers through CTC’s Carers Voices podcast project, which has encouraged unpaid carers to talk about their personal experiences of being an unpaid carer. Having access to the podcasts got Emma’s scriptwriting off to a flying start.  This, combined with the opportunity to meet directly with unpaid carers and to work closely with Cheryl Murray, the Unpaid Carer Lead at CTC, ensured the play accurately and sensitively reflected the experience of a diverse group of unpaid carers in the region.

Ian Seymour, General Manager at CTC who was the driving force behind the conference and the play, has paid tribute to Emma and Cheryl and to everyone who contributed to the project. He said: “We wanted unpaid carers to be centre stage at our 2024 conference, and with the significant content we had already gathered through our podcast project, I had the idea to replace a keynote speaker at the conference with a play. I couldn’t be happier with the first live performance that was witnessed by our conference delegates in Easterbrook Hall during the conference and it really touched those who were there. Emma, the production team, the creative team and the actors really delivered on this project, for which I am extremely grateful. The response on the day and afterwards has been fantastic from unpaid carers and from service providers. Everyone could relate to someone or an experience within the play, and, most importantly, it was, and continues to be, a catalyst for further discussion and change.”
Liam Russell, Director of Up Yer Airts said, “It was a pleasure to work on this project and help to fulfil the innovative approach of CTC to addressing the experiences of unpaid carers from all backgrounds. As an organisation, we were responsible for recruiting and guiding a creative team of young professionals from the region, to make this play come to life. From the incredible writing and direction of Emma Forsyth to the Set and Lighting Design from Juno Glover and Dale Muir, the visionary cinematography from Ruari Barber Fleming and the jaw dropping performances from the young actors involved Josh White, Sahar El-Hady and Andre Anderson, this project was a huge success. Up Yer Airts prides itself on empowering young people to embark on a journey of self-discovery and confidence building, helping them to realise their creative passions. On Our Street met all of those targets for us. Thank you to CTC for trusting us with your vision.”
Considering next steps, Ian added: “It is all very well listening and empathising, and while we all appreciate the significance of the challenge, my hope is that we can all work together to use the skills, knowledge and resources we have to take action and make a difference to the lives of unpaid carers, those they care for and those working within Health and Social Care too. We need to be bold and do things differently, we need come together to represent the needs of the region, we need to appreciate the value of unpaid carers and the difference they make to those they care for and their positive impact on the NHS, but we also need to protect them as individuals by supporting them in their role and making life easier for them as they struggle to balance their commitments and needs too. This is not an ‘us and them’ scenario either – many of us are, or will be, unpaid carers now or in the future and it can happen at any time, so what we are trying to do now, should help all of us at some point.”
“What we do next is what really matters.” He said. “I know there is a passion for change, so if we can all do a little, maybe we can collectively make a difference. From CTC’s point of view, we hope to utilise the play as an educational resource to help others understand the daily challenges and experiences of unpaid carers and as a way to raise awareness of the help that exists too. I am also confident that many of the other organisations who were represented on the day will also want to play a part in changing how we recognise, value and support unpaid carers.”
Cheryl Murray, Unpaid Carer Lead at CTC who was actively involved in planning the conference said: “The play certainly set the scene and the tone for the rest of the conference and it was great to see people coming together and speaking more openly about their own experiences and what would help them. I am fortunate in my role to work with and support many unpaid carers, but I also work closely with many of the partner organisations and service providers and help signpost unpaid carers to their services too. I understand the challenges, but I want to thank everyone who attended the conference and especially those who share our ambition to ‘Think Carer’ and to help change things for the better.”

While the play may have captured the attention of the audience on the day, the rest of the day provided delegates with access to workshops and market stalls and the opportunity to speak directly to service and support organisations and to other unpaid carers. For many people, just having the opportunity to listen and speak to others about their own experiences was extremely valuable.

For anyone who would like to access information from the many organisations represented at the conference the programme and a directory of exhibitors can be found on the CTC website and there is also a large database of organisations featured on the Third Sector Dumfries and Galloway website.

There are also various platforms for unpaid carers and support organisations to continue conversations including monthly meetings of the EuCHO Group at CTC with themes to suit the needs of the group.

It is hoped that the emerging themes from the conference will continue to help inform future strategies and interventions to support unpaid carers at home, in the workplace and in schools/places of learning, as well as to help organisations to focus their efforts on the most pressing needs of unpaid carers in Dumfries and Galloway.

Anyone who would like to find out about future events can sign up to the mailing list for unpaid carers and access the directory of support organisations by visiting https://caretrain.co.uk/unpaid-carers. Alternatively, email [email protected] or call 01387 249111.