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We mustn’t silence patients and families in service design

Bev Fitzsimons 17 June 2020

We need to ensure patient experience is part of the conversation as we think about post-Covid services, writes Bev Fitzsimons.

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The Covid-19 crisis continues to be challenging for everyone across the health system, whether you are a healthcare leader making life and death decisions, a member of staff working under unprecedented pressure, a shielding patient – or of course anyone affected by this terrible condition, and the families bereaved by (and during) Covid. 

We have been moved by the appreciation for carers and key workers, and the kindness and solidarity we have seen between colleagues such as those who are part of our Schwartz community. We are beginning to hear from those who are part of the Point of Care Foundation’s broader network about how rapid change in the delivery of services has been driven by the Covid pandemic. Changes that had been under consideration, sometimes for years, have taken place seemingly overnight. Long-discussed concerns about whether it was possible or even desirable to deliver on-line consultations and out-patient appointments, or share records and information across organisational boundaries, have been resolved and services adapted with great speed. 

What we are also hearing, however, is that, driven by the crisis and the need for a rapid response, patients and service users are being left out of the change process. As one person said: “A decade of patient involvement has been thrown out of the window”. These changes have profound consequences for patients and families, whether through delayed referral for suspected cancers, non-provision of ongoing care for people shielding at home, or countless other examples. Many of these instances have been highlighted by patient groups. National Voices captured the need for patient and service users’ voices in the next phase of the Covid-19 response with their five principles for policy-making, summarised in the title: ‘Nothing about us without us’. 

Within health and care, it is vital that we avoid a ‘new normal’ where change, however rapid and necessary in the context of the crisis, is stripped of the fundamental involvement of patients and families. 

Now, as some routine services are beginning again, our communities report how much harder it is to re-start services than it was to stop them. But as services do start up again, it is essential to re-focus on the experiences of patients and service users as well as those delivering care. The reasons for involvement are as true as they have always been: the only way services can meet the needs of patients and families is if we take the trouble to understand those needs from the perspective of the end user. With the best of intentions, we won’t understand what matters to people unless we ask them. Service leaders should also remember that patients and families can be a remarkable source of insight and innovation in helping design solutions to the problems we unearth. 

So what can we do to ensure this important agenda is not forgotten in the heat of the Covid recovery phase?

At the Point of Care Foundation we have been supporting NHS and other colleagues for over 10 years, using methods such as Experience Based Co-Design (EBCD), to make sure that change projects are informed by the experiences of people providing and receiving services; and that these activities are undertaken in a way that shares power, with the design of solutions shared between all those affected by the change. This agenda has never been more important. 

So, to support the design of services in the post-Covid world, we have taken EBCD online. We’re offering a range virtual options that can be used to get as close as possible to true ‘co-design’. Yes, there are limitations imposed by social distancing, which will prevent patients, carers and NHS staff from coming together in groups for the foreseeable future. But our goal must be to further widen patient and family involvement. Maybe virtual options, which remove the barriers of time and resource that have sometimes made it difficult for co-design groups to come together physically, will help us to do this. 

We know that Covid has exacerbated some of the inequalities that exist in our health and care system. By working to ensure that patients and families can play their part in shaping the services that emerge post-Covid, we have a chance to help put this right. 

Learn more about online EBCD training