Advocating for Treatment

Understand the Mental Health Act as well as Privacy and Consent legislation.  Navigating the mental health system is not easy so the more you know the better.  Knowledge will give you the confidence to advocate for both your rights and the rights of your loved one. This link will help you get started understanding the Mental Health Act.

Have an open and honest conversation with your loved one and let them know that you are there to support them. Ask how they would like you to be included in their care.  Explain how your involvement could benefit them:

• You can take notes so they can remember what was talked about in a session
• You ask questions that they are uncomfortable asking
• You can help to provide context to a situation that is difficult to explain
• You can simply  be available for moral support, if needed and not talk at all

Encourage your loved one to provide their physicians and clinicians with consent to release necessary information to you.  If they agree to provide consent for open dialogue, the professionals involved in your loved one’s treatment will be able to share the  information with you that they feel is relevant and are more likely to respond to your questions and concerns. If your loved one does give consent, get it in writing if you can and provide it to the clinicians.

If your loved one is reluctant to give consent, it might help to let them know that the consent doesn’t have to be completely open ended. They can decide what they want you to know.  For example, your loved one can provide consent to their treatment team to speak to you about referrals made and treatment options, but not the details of what was discussed in a session. This type of arrangement is not out of the ordinary and is very common. It will allow you to ensure your loved one is receiving all of the support available to them and making all of their appointments, but also allows them to maintain their privacy when it comes to sensitive topics.

The more your loved one feels that they have control over their own care and the more they trust you, the more likely they will be to provide consent and have you participate as an active and informed member of their recovery team.

Introduce yourself, define your relationship with your loved one and ask what you can do to help in the treatment and recovery process.

If you find that a professional won’t speak to you, don’t panic! They are following professional standards. When you are in crisis it may be difficult to remain calm and at times a practitioner may appear insensitive or uncooperative. Try not to react with anger or with criticism, rather show them the respect and demeanour that you wish to receive in return. This will help to develop rapport and ultimately get you further. The key to your loved one’s recovery is ensuring all involved work and learn together. An adversarial relationship with members of the treatment team will not benefit you or your loved one.

It is also important to keep in mind that while the clinician may not be able to directly engage with you, there are some ways you can get information to the clinician about your loved one’s symptoms and history.

• Provide a history of your loved one’s mental health history in writing. Send a letter, fax or email to the professional and include all of the information that you think they need to know about your loved one – their struggles, past treatment history, medications and your concerns.  It is up to the clinician to decide if they will read it or not, however, clinicians know that their client’s loved ones know them best and will appreciate having the historical information. Keep in mind, however, that they may share what you have written with your loved one so be prepared for potential fallout.
• You can try to have a conversation with the clinic’s staff, i.e., the mental health nurse or psychotherapist. They are required to document conversations regarding their patient’s care, so this would be on file for any clinician to read.
• Ask if the agency has a program specifically for families or caregivers. Working with a staff person who has specialized skills and often personal experience as a caregiver, will give you the opportunity to talk about your loved one and your concerns.  If this information becomes part of your loved one’s file, the clinicians will have an opportunity to review it.
• Keep detailed records of what documentation you give to clinicians, as well as when you provided it.

You do have the right to complain and to ask for clarification if you feel that you or your loved one is being mistreated – the key is to do so in a measured and respectful way.  Start by approaching the individual involved and if you don’t receive a satisfactory response then move up through the usual chain of command (e.g., the Clinician’s Supervisor, the Department Manager, the Executive Director).  Each agency should have policies and procedures on how complaints should be handled.  Remember when lodging a complaint, do so with facts, not judgements and to ask only for what you want.

If your loved one is in hospital and you feel their rights have been violated, ask about the Patient Advocate (https://www.ontario.ca/page/psychiatric-patient-advocate-office).  Through this office you can get advice about your rights, advocacy and educational services for mental health patients and families.

As you try and navigate the mental health system, you are going to learn a lot and you are going to be connected with a lot of professionals.  Share what you have learned with professionals, family and friends.  You might be surprised what the professionals don’t know, or how they are unaware of how information is viewed through the eyes of a caregiver.