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59. Time’s up! Looking back with thanks and looking forward with hope

Written by Sarah Gibson, Research Associate, Kingston University.

So, my time is up on The Victoria and Stuart Project!

I’ve been one of the project managers of this project since April 2022 and my job was for 2 years.

My last blog (What I’ve learned so far from co-producing The Victoria and Stuart Project) was about learning from working together.

So, I’m excited to tell you that we’re now co-producing a paper about how we have worked together.

This has given us a chance to look back on

  • What’s gone well?

  • What was difficult?

  • What have we learned?

  • What difference has working together made for

    • us as people (our team)

    • the people The Victoria and Stuart Project has connected with

    • the way we’ve done the project (our methods)

    • what we have achieved together (our findings and the toolkit itself) 

We will focus on what working together with people with learning disabilities and people who support them has taught us a lot about the relationships, fun, creativity, and resources needed.

We looked back together in different ways including:

  • a treasure hunt in our Kingston office where the people we work with were the treasure.

  • a pass the parcel with questions in each layer

  • online meetings/emails with our research colleagues and partners.

  • reviewing the blogs and posters which have recorded how we’ve worked together.

Some of the results of our reflection are this co-production flower.

We’ve been working together over the past few months to look at our reflections and analyse them. We hope to make a new set of ideas about what is important when working together on research.

We hope this will help others when planning work together in the future.

You can see Richard and I working together on ways to describe our work here.

Some of the headlines are:

  • We bring all of ourselves to our work - strengths and challenges, emotions and expertise.

  • We value our relationships, fun, creativity & flexibility. 

  • We acknowledge the resources: time, money, heart, skill, care and support that goes into working together well.

Looking back, I am thankful for

  • The amazing colleagues both with and without learning disabilities I’ve worked with on this project at Kingston University, from MacIntyre and Dimensions, Voluntary Organisation Disability Group and Mary Steven’s Hospice.

  • The fun we’ve had creating ways to work together and make spaces for people to be heard

  • The important stories we’ve listened to and the people who have shared them  

  • The life events we’ve shared including big birthdays, serious illnesses and bereavements, a new baby; our many awards for inclusivity(!)

  • The things we’ve learned together about supporting people with learning disabilities, their friends and families, support workers and managers to have conversations about illness, death, dying and funerals.

  • The many people who have helped us codesign and test our new toolkit of resources for end-of-life care planning.

Looking forward I am hopeful about 

  • The Victoria and Stuart Project Toolkit and Guidance which will be launched in June.

  • The Victoria and Stuart Project research articles we will finish and publish together.

  • The many other ways we will tell the world about the important work we’ve done and about what we have learned by working together so carefully, creatively, and compassionately.

I hope and pray that our work will be useful to millions of people worldwide to support important conversations about and planning for end-of-life with hope for the future, whatever it brings.

Goodbye and God bless you all for now.


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