Advocacy for Health
Its often stressful being in medical or dental settings, and feeling stressed can really affect our ability to listen to and process information, and to be able to express our own thoughts. Add in to the mix medical jargon, understanding medical issues or medications and the process of representing somebody with high support needs can feel very difficult.
Families also say that they often find it impossible to remember all of the information in medical and dental appointments. Families report that having somebody with you in all medical or dental appointments can be very helpful. This person does not have to be a formal advocate, just somebody you know and trust. The role of this person might be to:
- Offer another set of ears to listen to information given
- If they know you and the person well, back up what you say or offer examples to illustrate points you are making
- Take notes so there is a written record of the meeting to refer back to
- Offer emotional support if the appointment is difficult or causing anxiety to you or your family member
It can feel daunting to ask somebody to take on this role for you and the person you support, but often there are people we know who do want to help but need to be invited in and given a role. Some families start by just mentioning to people they know that they are looking for somebody to attend medical appointments and ask if they have any ideas of who might be interested. Sometimes support workers can be good partners in appointments too, as can people in other paid roles.
You can ask the health practitioner if it is ok to record them talking about important information which may be difficult to recall later, or that you need to share with others. Families say that often practitioners are happy to do this and that recording parts of the appointment on their phone has been helpful, especially when there is important information which needs to be followed up or shared with support workers.
Sometimes, everyone’s best intentions to work together come to a difficult point and an independent person is needed to help to clear the air. Professional advocates are available when there is a disagreement about a clinical decision, concern that the person’s medical or dental needs are not being met, or some form of conflict. Advocates don’t need to know about the clinical issues of medicine or dentistry – they just need to be able to recognise when there is an unfair process, communication challenges, or that Human Rights are not being upheld. Sometimes an independent person can see issues in a different way because they are not closely involved and can point these things out for others to consider. The role of an advocate in a medical or health setting should be to:
- Hear about the situation from you and respect your views and confidentiality
- Take your lead on what steps to take, and not act without your agreement
- Be honest and forthright with you and report back to you on any new information
- Stand beside you, not speak over you or against you
- Stay positive and optimistic, to allow for creative thinking and new ideas
- Be pro-active in relationship building and minimising conflict
- Always keep in mind the need to consider the interests and needs of the person you are supporting
Finding an advocate can seem daunting, but the internet will always be a good place to start, through a search or via social media networks. Asking at the Health or Dental service you are attending can also be a start. Some hospitals have patient liaison officers who can help. WA has one of the only funded health advocacy services in Australia, called the Health Consumers’ Council, which provides a free service by phone or in person. Families say it is helpful to know the rights of their family member in health care settings.
The Australian Charter of Healthcare Rights describes the rights that you, or someone you care for, can expect when receiving health care. These rights apply to all people in places where health care is provided in Australia. This includes public and private hospitals, day procedure services, general practice and other community health services. There is a range of resources including Easy Read explaining the Charter here: WA Health Charter of Rights
All patients in WA hospitals have a fundamental right to health care that is respectful, responsive, safe and effective, and this includes people with high support needs or people who can present with behaviours which seem challenging. This WA Department of Health summarises the rights and responsibilities of patients. Hospitals have a formal process for escalating concerns if you are worried that the person you are supporting is not getting the right treatment or is getting worse. You can ask hospital staff to explain the process and how to access it.