This film was developed for health services to use as part of an experience-based co-design (EBCD) process. EBCD is a patient-centred quality improvement process, and if you are planning to implement it in your organisation we recommend you use the online EBCD toolkit to guide you. The Point of Care Foundation is also developing a learning programme on EBCD supported by NHS England. We anticipate that it could also be used as part of an experience-led commissioning process. The film is a ‘trigger’ film which is intended to get local people, patients, families and NHS staff talking together about how they can jointly improve people’s experience.

If you plan to show this film, we suggest the person facilitating the session use the following introduction to set the scene.

This film was put together from analysis of a national sample of 34 people (including 3 carers) talking about their experiences of psychosis. Researchers at the University of Oxford collected interviews with people all round the country, many on video, some audio or written only. They present findings from these interviews on the patient information website healthtalk.org The interviews are not just about NHS care but also much wider experiences for example the impact that psychosis has had on their family, work and social lives.

For this project, we looked again at the whole interview collections and this time pulled out specific themes around experiences of services and ‘touchpoints’ (points of contact with the NHS).

Obviously these are not people from your local area and everybody has a different experience, though some patterns do start to emerge from looking at many stories. Some of the things they say you may think aren’t relevant to local services or what happened to you. But our hope is that listening to them will help you reflect on your own memories and spark some ideas for what could be done differently here.

There may be some where people are frustrated or angry, because of the distress they have experienced. You will hear some negative comments, because we can learn a lot from looking at when things went wrong and what could have been done to make that a better experience. Even when people are largely positive about the rest of their care, one damaging bad moment can colour the whole thing. But listen out for positive comments too, where people remember some small act of kindness or a particularly good moment that made all the difference to them.

This film was made with funding from the NHS National Institute for Health Research Health Services and Delivery Research (HS&DR) Programme, as part of research project 10/1009/14.
The views and opinions expressed are those of the authors and do not necessarily reflect those of the NHS, the NIHR, or the Department of Health.
The original interview study on which it is based was supported by the Department of Health and led by Laura Griffith. Re-analysis of the interviews was led by Susan Kirkpatrick.

We would like to thank all of the participants who generously shared their stories with us.