Written by Nicola Payne, MacIntyre Health and Families Manager.

I have been involved in The Victoria and Stuart Project since the start of the very first meetings and how the team at Kingston University would want MacIntyre’s involvement and contribution. It was exciting to start to see how this project would go on to involve people to have a voice and be part of future decision-making for their own future planning.

It wasn’t very long at all when I started to see true co-production. MacIntyre was contributing from all angles. People with lived experiences taking part in meetings that could have happened without their voices being heard. I can state that this was never the case and voices are being heard loud and clear, with the sound of much laughter too, who would have thought talking about death and dying and hearing laughter fill the room!!!! I believe this is because people feel safe, in control, and have no pressure to have the answers. I would like to share an insight into the Monday All Together Group who meet in London.

There have been a few Mondays where it’s been cold and dark, I get into the car and make my way to the train station, destination St. Georges Hospital Tooting. I don’t do this journey alone. I meet with friends and work colleagues and we travel together.

We, of course, start the conversations of “Have you had a lovely weekend?”, “What did you get up too?”, “What did you have for breakfast?” etc…. conversation soon moves on to what will the day will have in store for us all, a feeling of excitement, and then we browse through the day’s agenda, printed out to allow us all to understand what we will be focusing on, if the agenda feels a little heavy we will have the much needed time on the train to talk this through. I gain a sense of confidence when we arrive at the university, we are all feeling ready to work together. The pace of the day makes all the difference, allowing for choice and control for everyone.

The All Together Group that I have the pleasure to spend time with and now call friends is one of the most supportive forums I have ever worked in. Everyone values everyone’s contributions, listens, respects one another and most importantly is kind to each other. We can never forget that we are talking about death and dying but I hope you are getting the feel from my words that this has been thought through on how everyone is truly, 100% contributing in a way that makes sense to every person and are happy with what we are talking about. If things do become difficult this is respected and at times, I have seen people being empowered to put items into the bin and we move on to a different focus.

So the day fast comes to an end and we make our journeys back home, to different parts of the country, some on the same trains, others going in different directions. Before we all depart, sincere goodbyes, waves, and at times hugs are shared, leaving one another until we are together again the following month.

I reflect, and think through what we have experienced and what we have learned on the train back with my MacIntyre colleagues. Allowing time for reflection is so important for any meeting but very important when we are having conversations about planning for our futures and talking about death and dying. We leave the train station and eagerly await our next visit to be with the All Together Group. Team work really does make the dream work!