Following the tragic death of my daughter-in-law, I began to get involved in various initiatives to support clinicians to improve mental health services, and learn from deaths by overcoming the barriers to meaningful engagement of family and friends’ carers. I joined Making Families Count, and met with other family members and health professionals. Karen Lascelles at Oxford Health NHS Foundation Trust proposed the need to support reflective learning for clinicians, an idea supported by the Making Families Count Directors.
The project was a partnership between Making Families Count, Oxford Health NHS Foundation Trust and NHS England South East, who contributed to the cost (with Health Education England legacy funds). There are more details about the project here.
The co-production process we used to develop this project ensured that the materials are rooted in the learning needs of clinicians, the lived experiences of patients, family carers and, of course, clinicians, and are located in the wider structures that mental health service users and their families encounter. Co-production is not a ‘nice to do’ – though it is that. It is essential to ensure that the end products meet the needs of end users.
Our co-production process had three key elements:
- An advisory group to offer critical challenge and support to the project as it developed. Members of this group reflect the wider systems that people in a mental health crisis and their families encounter: emergency departments, para-medics, GPs, psychiatrists, coroners, police…and we also made sure we had patients, family carers and a range of clinicians in the group.
- A co-creation group of patients, family carers and clinicians from Oxford Health NHS Foundation Trust, to do the detailed thinking and share experiences and expertise to create the resources. All members of this group were part of other networks associated with the Trust, so all had access to support should they need it.
- We piloted the materials, first in Oxford Health NHS Foundation Trust. Once we reviewed the feedback from that first pilot, we refined the materials and tested further in 11 NHS Trusts. A team from Buckinghamshire New University evaluated this phase.
This approach to co-production works. Some 90% of clinicians who tested the materials in the second phase of testing told the evaluators that the materials were relevant to their clinical practice.
It is also a learning process in itself. Members of the co-creation group said that participating in the co-creation process
- “has made me so aware that friends and family have untold knowledge of the person who has attempted to take their own life. The family and friends are able to impart such useful information that professionals obviously could not be aware of. It has been an honour to work with all the other participants and to feel part of something which could result in real improvements in the care of those who find themselves in the unfortunate position of wanting to end their life.”
- “has been both humbling and exciting.”
- “has given me a voice in an impenetrable system. My opinion is valued and I better appreciate what staff have to manage.”
- “has enabled me to share and learn from the different perspectives and experiences within the group. I have felt a sense of community and collaboration and had time to reflect upon my own practice as a result of the insightful contributions from others. The co-creation process has been a safe and supportive environment to learn and challenge my own unknown bias and thinking. I strongly believe that having the knowledge and expertise from multiple individuals has strengthened the eLearning resource produced and I’m keen to continue to try and facilitate as much training in the future via co-production due to the clear benefits.”
- “has provided me with a precious opportunity to critically reflect on the care and support we provide as MH practitioners especially regarding family involvement, whilst listening to lived experience colleagues, and coming together to develop a resource aimed at enabling professionals to listen, support and assist families/carers in helping to keep their loved ones safe. It has been a truly rewarding experience for me.”
I could not bring my beloved daughter-in-law back to life, and I could not alter the trajectory of the impact of her death on everyone who loved her (and there are many of us). But I hope I have left a legacy for her. And the experience of working with clinicians, family carers and people who have mental illnesses has been redemptive for me.
The materials are free to the health and social care workforce via NHS Learning Hub. Search for “Life Beyond the Cubicle” once you have logged in. Or you can follow this link and then log in. Note that the materials are not suitable for the general public so you have to have an account to view them.