Regarding the first statement of the EPF Campaign for the EU Elections, I totally agree that every patient’s view matters. The thing is, the professional view has been built on centuries of acceptance of expertise while patients were still disempowered and not treated with due respect.
Becoming a patient doesn’t mean becoming somebody else. It does however, give insight and when people share that insight it is the duty of others to respect and recognise their experience. Patients are often in a difficult position as it is not always in the interests of agencies and organisations to have patients truly empowered. It can interfere with business, the way things have always been done and it can upset people’s ideas of how a patient should be. It can also really interfere with political agendas!
Patient organisations are the real representatives of people with chronic conditions or illness. Hearing the unfiltered version of life experiences directly from a broad range of people, is the only way politicians and policy makers can honestly say they are making well-informed policy decisions. It isn’t about who shouts the loudest, it is giving everyone the opportunity to have their voices heard and listened to.
As the EPF Manifesto mentions, health literacy is vital to having meaningful dialogue that leads to better health outcomes. However, the drive for public health-literacy must be coupled with better communication training for health professionals. Professional training events where people meet one another, engage and learn together are great places to start.
Personally, learning about my condition, planning for my visits to my neurologist and making well-informed decisions are fundamental to my good health. Earlier in my life, having the support of someone who was well trained and aware was very important. I was lucky, not everyone has access to this kind of person. That healthcare support is based on luck, is ridiculous considering the efforts put into other areas of life.
People need to be informed that they have choices to make about their health and that there may need to be personal behavioural changes. While this takes time to plan and implement, the alternatives are to continue spending vast amounts of money in a reactive way on short-term solutions rather than spending carefully now to interrupt the cycle of life-long ill-health.
Furthermore, it is fundamental that patients have access to training for communication, empowerment and confidence to be able to share their perspectives. Workshops with health professionals and public representatives; and collective discussions where people can engage breaks down barriers and will bring positive results.
As for the access to healthcare point in EPF campaign, I share my experience as an activist and patient in the Irish healthcare system. Part of it needs serious reform. The interests of people with illness, chronic or acute, seem to fall to the bottom of the priority list. I have access to a neurologist once a year. If I need counselling or need to see someone for physiotherapy because my muscles are losing strength, I need to be able to pay for it myself. Thankfully, I am working and can afford to pay for such necessary services. Many of my friends and other people with MS on limited incomes cannot afford to pay and have to wait months if not years for an appointment in the public system. I want to give myself the very best opportunities to make the most of my life. It isn’t like any of us has a second chance. What I would say to people who are making decisions is it is never too late to make things better and do things differently.
To people who say that there is little reason for patients to get involved in the elections for the European Parliament, I would answer that political disengagement is in the interests of those who want to hold power and control. If nothing else, regaining our democratic values is reason enough to take part and cast your ballot. If anything, people in the public service/elected representatives, may have forgotten who it is they’re serving. Elections are a way to remind everyone of our civic duty to partake in our future.