Patient involvement in integration of services
Being a patient representative on an integrated care project has been an empowering and rewarding experience, although sometimes confusing and often frustrating. I have to constantly adjust and re-establish my understanding of the role depending on the changing expectations and priorities of the team. As a patient representative you don’t have the same support structures as the professionals on the team, and it can be really challenging (sometimes baffling) working within the rather unique organisational culture of the NHS. My passion for change that impacts positively on the lives of people with chronic medical conditions helps keep me engaged and focused.
Sharing views and challenging thinking
It is important that patient representatives are clear about their role. In many ways I have mostly found myself being accepted and treated as a professional, but not always, and certainly not by everyone. I consider myself a professional patient with responsibility for providing unique input during meetings and beyond, if requested. But I found myself having little authority and being subject to other’s opinions as to where I fit into the hierarchy of the team. There is a mix of reactions. Some people tolerate patients because it is politically correct to listen to the patient. Some people are glad that I am part of the team and that I raise a particular issue because they cannot say it in their position. Maybe patients are sometimes better positioned to challenge decisions when the practitioners feel they cannot.
From a practical point of view, it is useful for a patient representative to know about their responsibilities and the time commitment required, and for procedures to be made as simple as possible. Training is very important – as much for patients as the staff who support them. Patients also need help to understand the NHS as a system. The NHS is a very complex organism, and there is no simple diagram to help patients understand how all the parts join together.
The value of patient representation
We must strive to ensure patients are always considered and treated as crucial and valued members of the team. There is too much lip service paid to patient involvement, and I would strongly recommend that patient involvement should always be real and actively encouraged.
However, there is a crucial difference between being engaged and being involved. Projects benefit so much more when patients are involved from the very beginning – at the stage of shaping an idea. But too often patients are presented with a final product to comment on, which puts them in the difficult position of challenging something already determined. It would be so much more beneficial to ask patients for their input throughout the process.