Advocating for Treatment: Empowering and Supporting Your Loved One through the Treatment Process

Helping your loved one through the treatment and recovery process can be difficult. As much as we wish there was a “one size fits all” plan that we could share with you, this simply isn’t the case. The truth is, there is no single way to advocate for or support someone suffering through mental health challenges.  Every person, every situation and every recovery is unique and different.  How things will work out will largely depend on the level of trust and collaboration that exists between yourself, your loved one and their care team.  Building strong relationships with everyone who will be involved in your loved one’s care will take effort, resiliency and at times, lots of patience.

Support your Loved One

Your loved one is the expert on themselves so let them guide the process.  While it may often seem easier to just jump in and help, never assume, always ask your loved one if they feel that they want or even need help.  Respect their wishes.   If your loved one is not engaged in the process, it is doomed to fail before it even begins.   When a person feels that they are in control of the direction of their treatment plan, they are far more likely to feel empowered and ultimately follow through.

With that said, you can still help to facilitate change through the things that you do.  Remember, you have control over your life and your actions, while your loved one has control over theirs.  An open relationship with your loved one can go a long way to building trust, keeping everyone informed and supporting your loved one’s care goals.

Find a Family Focused Care Team

When family members are able to be part of the treatment team, the family structure is strengthened which in turn helps the individual to recover more fully and in a more sustainable way.  When looking for a therapist for your loved one, ask about family engagement.  Does the agency value the role of families?  Do they actively seek to engage families in the treatment plan?  What support do they have for families?  Are they willing to work with both you and your loved one?  How will they work with you and your loved one – together, separately or a combination of the two?

When no one will listen

The law and professional ethics require that doctors, nurses and counsellors keep everything that they discuss with their clients/patients confidential unless consent is provided. This may leave you feeling isolated and not included in your loved one’s care at times. This can be frustrating, but if your loved one is considered competent and doesn’t consent, they can’t share information with you. But this doesn’t mean that they can’t or won’t consider information that you provide. If there is something that you feel your loved ones treatment team should know, tell them. Write a letter, leave a voicemail or speak directly to them. They will not be able to answer any questions you have or speak specifically about your loved one, but they can listen to what you have to say.

The final decision to accept or consider this information rests with the clinician, however you can help to facilitate this decision by doing these next few things.

  • Educate Yourself

    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.

  • Talk to Your Loved One

    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.

  • Communicate Effectively with Professionals

    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.
  • Know your Rights

    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.

  • Build Connections

    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.