Mandy Rudczenko blogs about her time with the Coalition for Collaborative Care’s co-production team.
The day I got involved in the Coalition for Collaborative Care was a day that changed my life.
I had dabbled in patient/public/carer involvement, but his felt like a whole new ball game. At the time I was having regular battles with my son’s consultant. My son has Cystic Fibrosis, which involves a heavy treatment burden to stay alive. A long term condition like this brings with it a long term relationship with a medical team, which can have a huge impact on a person’s life.
The battles we had centred around trying to de-medicalise my son’s treatments; e.g. I had been trained to do intravenous antibiotics at home, but the new consultant wasn’t happy about parents doing this. The conflicts often left me feeling like a bad mother.
The first workshop I attended about the proposed ideas for the Coalition for Collaborative Care (June 2014) gave me a fresh perspective on the relationship between patient and clinician. I had a long chat with a doctor who empowered me into realising that the medical team had a duty to work with us, and to practice shared decision making. I returned home full of hope and wrote a letter to my son’s team, saying that I wanted to work with them in a more collaborative way. It didn’t have much impact on them, but it was mine and my son’s first step on the journey to self-management.
Having been a member of the Coproduction Team for 4 years, I like to think I have made a difference. I have done things I never expected to find myself doing:
- Co-chaired NHSE workshops
- Given talks at the Kings Fund
- Co-facilitated coproduction workshops for the Reading Well scheme
- Had blogs published
- Sat on the main stage at NHS Expo.
The opportunities I have had with the Coalition for Collaborative Care have helped me to evolve into a different person. I am now someone who champions the importance of the skills and experience of patients, carers and the public, in the coproduction of health and social care innovations. The skills I have developed have also led to me becoming involved in other opportunities, which have enabled me to see myself as much more than ‘just a carer’.