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Transatlantic co-design: learning from each other

Bev Fitzsimons 05 May 2017

In this blog, Bev Fitzsimons recounts her trip to Toronto to run a training workshop for the Change Foundation’s ‘Changing Care’ programme. As well as identifying shared challenges, she also considers how we can learn from one another.


On 22 March, along with The Point of Care Foundation colleagues Joanna Goodrich and Elaine Hide, I was lucky enough to be asked by Toronto’s Change Foundation to contribute to a training workshop to over 200 participants in their Changing Care programme.

This programme provides support to health communities from across the Ontario region, with the overarching goal of improving the involvement and engagement of “family caregivers” (who we refer to as “carers” in the UK) in the care of their loved ones or family members. They came from a variety of services – from hospitals and mental health services to community and home care – and were interested in our work on Experience Based Co-Design, as well as our other tools and techniques which create more patient and family centred care.

It was moving to see the degree of commitment of the teams who comprised both professional staff and family caregivers from across the region – even from as far as Thunder Bay, which was described to me as “a fourteen hour drive” away. As well as these geographically focused teams, there is also a project which is focusing on the experience of young caregivers.

Caregivers of course are vital in so many aspects of care: projects focused on challenges such as helping to navigate the care of older adults, as well more highly specialist services such as supporting family members with addiction and mental health problems.

What was particularly interesting was that we could see from the teams attending so many of the features that we ourselves have seen as critical success factors in our own work: strong senior support for their work; existing genuine interest in patient and carer experience within the health system; and a perspective which reaches outside the walls of the institution.

Although each team had its own local priorities, they shared an explicit recognition of the important role of family caregivers in the care of individuals. The particular issues they had identified are just as familiar to us in the UK:  the complexity of healthcare systems and the lack of connection and communication between different providers of services; the lack of acknowledgement among healthcare staff of the specialist contribution of family caregivers to the care of patients; the importance of recognising the needs of caregivers as well as the needs of patients, to prevent burnout and distress; and the poor quality of transition between services.

The goals that the Change Foundation had identified in its projects are just as easily applicable to our own system: the importance of creating hope, reducing stress, providing support, ensuring full involvement in care decisions, and creating carer-friendly healthcare systems.  From an NHS perspective, we should recognise that these not only contribute to making healthcare more human (which of course, is what we are about), but they also make economic sense – in terms of the cost of poor processes of care, lost productivity among patients and caregivers alike, and the waste of healthcare resources when trying to ‘work around’ a dysfunctional and poorly co-ordinated health system. At worst, we see poor communication and co-ordination contributing to the deterioration of patients’ ability to bounce back from a healthcare episode, and even to risks to their safety.

As well as sharing our experience of co-design and patient-centred improvement, we learned so much in doing this work which inspired us to do more work with caregivers at The Point of Care Foundation. The Change Foundation is to be admired in its commitment to true co-design, with many family caregivers in the room. They were open to hearing how this co-design could be improved further – everything from the organisation of the sessions, the materials and the opportunities for feedback from caregivers. Perhaps now it’s our turn to learn from them.