Before I started PICH I already had a number of potential projects in mind, but little experience of what integrated care means. I was slightly nervous about joining the programme because I knew that it was quite likely that I would be the only non-clinical person in the room. I must say that all my worries were gone after the first meeting though: everyone was really nice, inclusive and open to listen to different views!
Being a project manager for an operational delivery network, at the beginning of my journey I spent quite a long time figuring out how I could adopt principles of integrated care in my day to day job. My pre-planned projects didn’t quite fit. In the end, my mentor challenged me to work on one of my work related projects from an integrated care angle. So, I chose paediatric long-term ventilation (LTV) as my area of focus.
PICH has made me reflect on the importance of understanding the needs of patients and their families in the re-design of healthcare services, and how little I knew about engaging with them, let alone hearing and taking their views on board. I had been in the NHS for three years always in management jobs and I had very little interactions with patients and their families. Not only did I do some reflection, but PICH also provided me with the tools to capture patients and families stories to identify where gaps in delivering services are.
Feeling slightly more empowered I participated to focus groups with families who have a child on LTV, I visited some of the parents in their homes for the first time in my life, and I organised a multi-disciplinary and multi-agency workshop to identify the challenges that all different stakeholders (including parents) experience when a child needs LTV.
PICH also thought me where to look for data and how to use them: I collated data from the providers in my network and I was able to map out were the greatest density of these children live. Some work that I’d like to do is around looking at health outcomes of children with similar health needs based on the allocated care package, and around understanding the reasons for re-admission to specialist centres.
I then collated all these qualitative and quantitative information and I realised that flow in paediatric critical care (my actual job’s task) cannot be improved unless we take all the factors in consideration: paediatric critical care centres don’t work together with district general hospitals. There is poor communication of the child’s and family’s needs at the acute-community interface with confusion over points of accessing care. Acute services don’t understand how continuing care services work, and those in health care don’t necessarily understand social care and local authorities’ processes. There’s very little psychological support for families and on top of that each borough does things slightly differently. This leads to profound health inequalities.
So… August arrived, I went to the last of my PICH sessions and I had accepted the fact that I did not have a well-defined project with some numbers that showed its impact.
What I did have instead was a different perspective on how I can contribute to improve healthcare services for children and their families, and a bunch of like-minded and inspiring people I can share the challenges I face at work. PICH has been an incredible journey that I’d definitely recommend to anyone, especially those in management and health policy!