What We Tried

We have taken a co-design approach with participating families

• respecting their lived experiences, no judgement approach;

• lived experience rep on the project Steering Group

• regular co-design sessions to design and test solutions and check back in;

• paying for their time spent on co-design work;

• upskilling them to participate in co-design and advocacy;

These measures aim to mediate the power asymmetry between the system, the expertise and processes our own organisations, and the families we were seeking to walk alongside.

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Our focus has been to learn not only what works well for families (in line with our project principles), but also to learn how the system responded when we tried working in this way...  

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Below are several elements of support we tested over the 2 years.