Imagine a world where becoming ill led to you being locked inside a hospital room in complete darkness, strapped to a bed used more times than you’d like to know, alongside patients with all sorts of diseases and only one foul-mouthed nurse to help you all. And every time you scream, or call for help, no words come out. You are silenced and helpless, isolated and consumed by your illness.
It sounds like a nightmare scenario, but its close to how some patients feel about their health-services: helpless, dealing with the same situation many others are in, offered no alternatives, often having only one person to ask for help and feeling completely alone.
If the people who felt like this found a way to ask for better, would they be given better? Hopefully, and if they asked for help as much as possible they’d be given the answers to everything they wanted to know – so they’d feel as much in the light about their condition as the experts are.
The patient voice is fundamental in changing health-services for the better, and it has been recognised and promoted by the Tuke Institute, the Francis Inquiry and other government inquiries, patient organisations such as PatientsLikeMe and the Picker Institute, among many others.
Patients should be able to participate in their services fully, not just in their treatment. Their voices should be asserted in order to be heard clearly, and they should be confident enough to raise delicate issues. Participation means complaining when services aren’t good enough, actively changing behaviour and ultimately working out what works for you and what doesn’t. It achieves a more efficient and effective recovery, enforces prevention on primary and secondary levels, and creates a better health-outcome.
Participating and asserting the patient voice, and incorporating the values of openness and transparency, are key to online communities (PatientsLikeMe, myHIV, HealthTap, Inspire, etc.) which help greatly to reduce feelings of isolation and loneliness. Patients realise they’re not alone, and that their experiences are more common than they imagined.
The coming together of the patient voice means empowerment, personalised services which are more effective and address the whole person, co-ownership of the process and shared responsibility for outcomes, confidence and trust in health-services, and a higher self-confidence to change things in the self and others.
It ultimately creates a vision for the future, one seen in the works of The Tuke Institute which, as a whole, considers the whole patient and every aspect of their journey. It is clear that there is a fundamental need for health-service reform, and that all patient needs should be addressed for a better overall health-outcome.