Shaping improvements in seclusion

Coproduction.pngPenny Thomas, a parent carer Expert by Experience, shares her experience of being a member of the Lived Experience Advisory Group (LEAG) for the Seclusion Transformation Grant.

The Provider Collaborative has a priority to improve the experience of people who require care in seclusion. Providers were invited to bid for funding to enhance their facilities, working in partnership with people with lived experience of seclusion on the design and delivery of improvements. This could include improved communication systems, sensory lighting, and access to activities.

The role of the LEAG was to design a scoring process for reviewing the proposals, review each proposal and make recommendations for the allocation of funding.  

"What draws me in is COMPASSION. I want to be part of something that will make a difference, for the better. Advocating for someone I love, or on behalf of those who suffer in a similar way, motivates me to do whatever I can to make the plight of mental health patients seen and heard. If they don’t have a voice, I shall be their voice. 

My CONTRIBUTION from Lived Experience is something that can be shared in a safe space. Nothing I say is wrong; I am not judged; my opinions are respected. Even though I may not be the service user, I have lived alongside my loved one, through his struggles, for many years. I can see how much, and how deeply, he has suffered. 

I listen, with CONSIDERATION, to others in the group because their experiences are crucial to awareness and understanding, for fellow patients, carers and staff. I am in awe of their courage and their determination to improve services for fellow patients. 

CO-OPERATION is key to discussions on the structure, format, agenda topics, feedback and opinions in every meeting. I believe that every one of us felt heard and valued. 

There is a goal in mind and COLLABORATION is fundamental to the successful outcome of any group effort. There were so many factors to consider during each meeting that we spent quite some time making sure we understood exactly what we were being asked to do. The task was very important to all of us and we wanted to be thorough in our approach at all times. 

Those leading the meetings showed genuine COURTESY towards the panel members and actively listened to what was being shared.  

I felt humbled and honoured to be included in discussions with service users who could teach me so much and it was a privilege to be working with them on a project of such importance."