Written by Meg Wilding, Best Practice Administrator and the MacIntyre project lead on The Victoria & Stuart Project.

The Victoria & Stuart Project has seen the importance and value of working with families from day one, in fact since the application of the project! Co-production are values that run throughout, which is so important when we are working with such a sensitive topic of end-of-life care and planning for the future, a topic that affects every single one of us.

When I reflect on our Thursday All Together Group (including families, researchers with lived experience, support staff, palliative care health professionals, academics, managers and facilitators), I commend the honesty, passion, empathy and openness that everyone displays.

I find it so valuable in my role at MacIntyre to understand and have an insight into the thoughts that families have. Having multidisciplinary members on the project enables me to think of things that I would never have thought of in my role, to look at end-of-life care and choices and understand it from all aspects.

“I feel that we have as much value in our contributions as the health professionals involved, I haven’t felt that before.” - Jo Allmond, family member.

Right now, I have real admiration for our families involved in this project. It brings me great joy that our space from 09:30–12:00 on a Thursday morning feels safe and comfortable, allowing families to really tell us what their concerns and worries are about their children. They guide us on what we want to achieve next, and inspire me personally to share my own personal experiences. Would I have wanted to be involved in a project around end-of-life care if I hadn’t experienced the death of my dad and his journey through palliative care? If I hadn’t seen what good planning and open communication about death looked like in my own experience? Perhaps not…

“It’s been impactful! What’s been good about being involved in this project is that I feel health professionals are really listening to families! This is unusual from my experience of being involved in other projects I have felt like I have been invited to “tick a box” and have eventually ended up leaving.” - Jo Allmond, family member.

I have learnt so much from our Thursday All Together Group, and continue to do so, some points that have been highlighted from families are:

• The worry of what happens when they die

• What happens to their child and their child’s wishes when family die?

• How do we share the rich information that families hold?

• Does a provider know everything about the person they are supporting to support them the best way possible, when family members die?

• Are families really being listened to by health professionals?

• How do we ensure as providers that families are really listened to and feel valued?