Advocating For Your Sufferer - Do's and Don'ts

Kathy · #1 13-09-2007, 01:02 AM

Here are some do's and don'ts for advocating for your family member with a mental illness. This particular guide is tailored for countries where Medicare is universal (such as Canada, the UK and Australia) so a small amount of the advice may not be pertinent if you reside in another country, such as the USA.

Families coping with a mental illness need to know:

How to be effective in getting help for someone who is seriously ill
What questions to ask
Who to see and where to go
How "the system" works and how best to interact with it

DO's:

1. KEEP RECORDS

Try to keep a record of everything —Nothing is unimportant!

Keep a list of names, addresses, phone/fax numbers, etc.
Start keeping a notebook or diary. The ability to be precise about dates and times of incidents, who said what, and what subsequently happened is crucial.
Keep all notices and letters you receive
Keep copies of everything you mail

2. COMMUNICATE EFFECTIVELY

When someone is mentally ill, patients and families are often so overwhelmed by the experience that vague information or jargon gets accepted as substantive. Family members need honest, direct information. They also need specific, practical suggestions about how to cope during acute and stable phases of the illness.

To get positive results:

Be polite. Keep all conversations to the point. Ask for specific information and write it down.
Get the name of the primary case manager—the person who knows the most about the patient. Arrange for an appointment with this person. Request that the psychiatrist or physician in charge also attend. During the meeting, ask to review your relative’s treatment plan. Ask to participate in the development of the Plan.
Help keep meetings short—come prepared with a list of specific questions. Some sample questions might be: "What symptoms should we he most concerned about? What can we do to help the patient deal with these? What medications are being prescribed? How much? How often? How is medication monitored? Are there possible side-effects?" (Also, if the patient is in hospital - "When can we meet to talk about discharge planning?")
Keep the patient informed of everything you plan to do.
Be polite but assertive. As a taxpayer, you are entitled to information, respect, and courtesy. Your taxes go to pay health care employees. You are not asking for gratuities or special treatment! You are simply trying to help get the job done.
Educate yourself about the mental health system, starting now. Learn about the departments involved, and about the chain of command in each department relevant to your relative’s needs. Familiarize yourself with services and resources outside the mental health centre.
Write letters of appreciation when warranted. Write letters of criticism when necessary. Send these to the head of Mental Health Services or to the hospital concerned.

DON'Ts:

REMEMBER:

Some actions are effective — others are counter-productive
Most professionals want to do a good job
Many direct-service staff are over-scheduled
These points hold true throughout the system — mental health centres, supervised housing facilities, hospitals, and forensic institutes. Direct staff (those who work directly with consumers — social workers, therapists, nurses, doctors, continuing care workers) sometimes have unreasonably heavy caseloads. Knowing this can help you maintain some perspective on what to reasonably expect.
Always start by assuming that the staff care and want to help your relative recover.

The following will help both you and the professionals:

Do not be late for appointments
Do not make excessive demands on staff, or harass them with special requests
Do not call all the time, or have long phone conversations filled with elaborate details

Avoid things that DON’T WORK!

Dealing with people just because they are accessible, but who actually have little or no power (i.e., secretaries, receptionists)
Always criticizing and never acknowledging mental health professionals for their good intentions and hard work
Only calling when there is a crisis, rather than establishing and maintaining a relationship with case workers, social workers, psychiatrists, etc.
Always expecting immediate attention and blowing up if you don’t get it.

Courtesy is something we all aim for. Do not, however, overlook the fact that professionals must also be accountable:

Don’t feel you should know the meaning of technical terms or phrases.
Don’t hesitate to ask for clarification in plain language, if you are unsure of specific issues.
Don’t accept vague answers or statements that are confusing. If someone says "We are observing your daughter carefully"— they are providing you with no information!
Don’t be afraid to ask for an explanation of procedures. Try to understand who does the observing, exactly what is being observed, how this information is documented, if and when you can obtain a progress report, and so on.
Don’t allow yourself to be intimidated (and don’t try to intimidate others.)

Finally, NEVER allow guilt or shame to play any part in these proceedings. Your goal is to help obtain proper medical care for someone who is suffering from a neurobiological disorder. Outdated notions of stigma have no place here.