THE PATIENT ADVOCATE HANDBOOK

THE PATIENT IS THE ‘SUN’ IN THE MEDICAL UNIVERSE Your voice is important. If you only take one message from this Handbook, then please let it be this: you have a voice and you must learn how to use it effectively while you or someone you love is experiencing a health challenge if you are to achieve the best and safest outcome. It was not always necessary for you to be as vocally active in your health care as it is today. Health care has changed. It is increasingly a system under strain. Decisions over limited health resources including questions of who can access health care, when, where, for how long, for what purpose and at whose cost are already complicated and will only become more so in the future. We all need to learn how to speak up and participate in this new era of health care because the old ways of interacting will not always be as safe and effective as they used to be. This is despite the very best intentions and endeavours of the individual health care workers involved! The health system, which in many ways is like a machine, cannot always cater for the unique needs of the individual. Health providers are increasingly seeking patients to become ‘partners’ in their health care. This sounds good – except that many patients and their families don’t really understand what is now expected of them. It is still common for patients and families who, for obvious reasons, are in a state of vulnerability, to default to a passive role in their health care relationships. They can all too easily ‘hand over’ their personal power and decision-making capacity to the health provider and health system. This is especially the case for people who are older or who are not naturally assertive. If patients and families do not know that the ‘goal posts’ have changed, then they are not going to be alert or prepared. They will continue to remain silent and defer to the health provider while trusting that ‘all will work out in the end’. But it is this silence that often leads to unwanted consequences. These consequences are rarely any one person’s fault – in most cases they are the result of small ‘perfect storms’ within a busy system that is trying to meet the needs of many with resources that are increasingly stretched. The patient is the only constant factor in health care, and so patients need to learn to speak. Everything revolves around the patient. This is why they are the ‘sun’ in the medical universe. This is why the patient (or the patient’s family, friend or representative) must find their voice. They need to be alert, engaged and vocal. They need to know that they have a vital role to play and be confident in how to play that role. This is the only way that patients can uphold their end of the bargain and be a true ‘partner’ in their health care. This Handbook aims to give you practical ways to develop and use your voice. It is not about creating conflict or being the loudest voice in the room – it is about being the most effective. It is about having a strategy and using clear communication to create the best possible outcome that is available to you or your loved one in your specific circumstances. This material was originally developed as a Training Course for people in Australia who were interested in patient advocacy. A patient advocate, as the name suggests, is someone who acts as a spokesperson or representative for patients and their families. The information in this Handbook has been modified from the original Course materials so it can be applied straight away. No prior learning is required! Although this material is based on the Australian health care system, most of the information is generic and can therefore be applied in other jurisdictions as well. However, where any legal or specific terms are covered, please note that this will relate only to the Australian context and was accurate at the time the material was originally published. It is therefore essential to make your own enquiries before relying on this material in case anything has changed in this very dynamic field. We have also included a number of links to external resources throughout this Handbook. All links were current at the time of publication, however links can easily change. For this reason we have also included some suggested ‘search terms’ which you can use in your internet browser to find a similar resource. Finally, we know that you are probably reading this Handbook at a time when you are in a state of stress and anxiety. In Chapter 1 we have provided a summary of what to do in the event of an emergency. We have also kept the rest of the Handbook as simple and easy to apply as possible – including giving you practical Exercises to help you to build confidence and skill. Above all, please remember that simply by speaking up, being alert and being involved you will already be making a real difference for yourself or someone you love as you move through the health system.