Nobody understands what it is like to be ill
better than someone who lives with illness.
Nobody knows what suffering is, who is not suffering themselves.
Nobody knows what matters and
how health care could be improved
better than the recipients and consumers of the services.
Beyond managing my health and the influence it has on my life, I have also become increasingly aware of being a patient in a complex health system.
Health systems exist to combat suffering. They are about helping people to live in better health, to be cured or to prevent suffering in the first place. On many levels huge progress has been made, reflected primarily by increasing life expectancy. However along the path of medical progress, terrible mistakes have been made: my grandfather was put in a corset and stretched periodically on a rack to treat his Spondyloarthritis, although he knew that regular gentle movement did him more good. A friend in Switzerland suffered a similar fate.
In my own medical history, much suffering could have been prevented, if I had been listened to more attentively, and my knowledge and willingness to contribute had been recognised as a resource in my treatment.
Now health systems everywhere are in crisis and they are often fulfilling their purpose inadequately or inefficiently. Health systems are sick and need treatment as well. Besides patients, who are not receiving the best possible care, many health workers are frustrated with a system that is not fulfilling the vision that motivated them to join their profession.
The power in health systems lies with with a small circle of experts on the provider side, whose understanding of what it is actually like to use and need the services is often limited. Why aren’t the experts who use health care, and with most at stake (the patients!) consulted and more involved in solving the problems and improving the services?
I believe that to improve health services, patients need to be given a role in healing broken and sick health systems, so I blog, work and advocate to pursue this aim. I am a tiny drop in a huge ocean. However I observe that slowly, slowly patients are beginning to be heard. Clinicians are usually willing to respond to patients’ questions and take time to answer them. Expressions such as “shared decision-making” are becoming known, even if they are still rarely practised. The treatment and protection of participants in clinical trials is improving, and in rare cases patients are even involved in research projects or management – the term Public and Patient Involvement (PPI) has been coined.
It won’t be easy – there are many opposing interests and much patient involvement is still tokenism. In Ancient Greek there is a saying:
“With persistence a drop of water hollows out the stone”from the Fragments of Choeriuls of Samos