Advocacy
Hope for patients and caregivers
It’s important for patients and caregivers to have hope. We know how hard it is to hold onto hope when watching your loved one’s health deteriorate. In most cases, the symptoms have come on suddenly and out of the blue. You may feel like your loved one is being obstinate and resistant and that a conversation will help them snap out of it. Unfortunately, that’s not the case when someone has Catatonia. It may take time to get a diagnosis because of the lack of awareness about Catatonia. It may take time to access proper treatment because physicians may not be educated. In addition, there are limited centers that perform ECT and access to treatment at those centers are in high demand.
Advocacy may be necessary for getting proper treatment. That may seem unfair because you are already dealing with emotional, physical and financial overload. Navigating the healthcare system is not always easy and requires you to find the strength when you are already tapped out. We understand! We hope the advocacy section below will help make it easier for you.
Our goal is that our stories will help you hold onto hope that you or your loved one will be cured. Our journeys to an accurate diagnosis and curative treatment were not easy. We were scared and overwhelmed and exhausted but knew we needed to continue to seek out answers and solutions. We are happy and grateful our family members or friends are thriving. We know it's not an easy journey. We are here to help.
Advocacy
When dealing with a medical or psychiatric condition, it’s important to learn how to relay information and ask questions without alienating the much needed medical and healthcare providers. For many people, this may be the first time they are confronted with having to navigate the healthcare system.
Each of the founding members of the Board of Directors of The Catatonia Foundation had to advocate for an accurate diagnosis of Catatonia and proper treatment for their family members or friends. It wasn’t easy and we all have varying degrees of experience with advocating and negotiating. We hope our experience and expertise will help make it less stressful and overwhelming for you.
Below are things to think about and ways to prepare in order to effectively advocate for your loved one. Navigating the healthcare system is not easy and you are most likely overwhelmed already. We hope that this will help ensure (1) your input is heard and considered by the healthcare professionals as they consider possible diagnoses and (2) your questions are answered so you can make informed decisions about the care and treatment for your family member or friend.
Why is it so challenging to advocate in the healthcare system?
There are many articles written about this challenge. Dr. Rana Awdish, a physician who experienced the challenges of being a patient, has written extensively on this topic. She coauthored the article "When Patients and Their Families Feel Like Hostages to Health Care" in which the authors equated negotiating with the “white coats” with negotiating with a kidnapper.
The article addresses the fear of alienating the healthcare team...
“In a healthcare setting, patients and caregivers hesitate to be assertive for fear of alienating the physicians and nurses. They often feel dependent and powerless. Hostage bargaining syndrome [HBS], which includes a reluctance to challenge people in authority, assert a different point of view, and question decisions that raise concerns, is an adaptive response to authority figures who retain de facto control because of attributes such as expertise, prestige, and position. Hostage bargaining syndrome often manifests as a form of compromise, such as understating a concern or asking for less than what is desired or needed.”
“Patients and families who exhibit the symptoms of HBS refrain from questioning their doctors, hesitate to express concern about potential errors or harm, and worry about being perceived as troublemakers or “difficult” for fear that it could affect the quality of care they receive."
It also points to the need to be well-informed about the patient’s condition…
‘Hostage bargaining syndrome may manifest as inner turmoil between speaking up or remaining silent, between assertiveness and inaction. The hesitation may even escalate to fear of saying much of anything at all. This risk is especially great when patients must advocate for themselves. Family members are sometimes better able to muster the courage to confront experts because they are not directly suffering the pain and dysfunction of disease and related treatments. Nevertheless, even family members can succumb to HBS, particularly if they are not well-informed about the patient’s condition, which can be a critical loss of support for the patient”.
What are some tips for caregivers when advocating in the healthcare system?
To download these tips click here.
1
Make sure you have support in place for yourself
Being a caregiver and an advocate can be overwhelming. Out of necessity, you are constantly putting your loved one’s needs before yours. You are navigating a system that you may not be familiar with. Seek out emotional support for yourself from friends, family, and professionals with expertise to support you.
It’s important that you are not looking to your loved one’s healthcare team for your emotional support. You want the team to be focused on your loved one’s health and be open to receiving relevant information and feedback from you. When you look to your loved one's healthcare team to support your emotional needs, they may be less likely to take your input into consideration.
2
Build rapport with the healthcare professionals
It’s important to build rapport with any healthcare professionals that are involved in the diagnosis or treatment of your loved one. Be friendly and engaging as much as possible. You may want to begin appointments with a moment of small talk to help everyone relax and let their guard down. Remember, you want the healthcare providers invested in your loved one and on their team.
While you may be in an understandably heightened emotional state, do your best to be calm, share from a place of confidence and ask questions from a place of curiosity, all with as little emotion as possible. Stay focused on the facts and getting your questions answered. It's normal to want reassurances; ask the questions in ways that will provide you with as much accurate information as possible (for example, what percentage of people with Catatonia are cured by this particular treatment or what is the likelihood of the Catatonia returning once the patient is cured?)
It may seem obvious but making sure you and your loved one are groomed well is important. Believe it or not, that’s often noted in the patient’s chart.
3
Be well-informed on Catatonia
If you suspect Catatonia or it’s been mentioned by a provider, even in passing, it’s important for you to become familiar with the following:
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The symptoms of Catatonia
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How Catatonia is diagnosed
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The various expressions of Catatonia
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The most effective treatment options for Catatonia
For a summary of this information, go to the Catatonia in General page.
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Do an inventory of the symptoms
Once you familiarize yourself with the symptoms of Catatonia, do an inventory of the symptoms your loved one exhibits. Make a list and describe in detail what you have observed them doing. It can be what you are currently observing or what you’ve seen since the onset of the strange behaviors—all are important.
To the extent possible, match up any symptoms you’ve observed to the symptoms listed on the Bush-Francis Catatonia Rating Scale. The rating scale does a good job describing the symptoms in a way that’s easy for the layperson to understand. The rating scale provides a method for determining whether a diagnosis of Catatonia should be considered and also a method for rating the severity of the symptoms on a scale of zero to three. It may be helpful for you to determine the symptoms your loved one is displaying first and then to rate the severity of the symptoms as best you can.
Click to download Bush-Francis Catatonia Rating Scale
5
Describe your loved one’s baseline
At the first appointment, a healthcare provider does not have information to compare how the behaviors they are observing differ from your loved one’s behaviors prior to the start of the change in behaviors. They may not understand how dramatically different your loved one’s behavior is now.
To assist the healthcare provider, describe your loved one’s mental state, physical state and behaviors prior to the onset of the symptoms of Catatonia. Healthcare providers refer to this as “baseline.” It will be important for you to use that term when communicating with healthcare providers because they will be more likely to take your description into account since you are speaking their language.
When describing your loved one’s baseline, describe the following:
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What the person was capable of doing - job, school, social, activities of daily living (eating, grooming, sleep)
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What a day in their life was like
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How the person dealt with challenges
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Any event(s) that might have precipitated the change in behavior
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Any medical or psychiatric diagnoses
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Timeline
Create a timeline of the following:
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When symptoms began and what symptoms were observed
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Other symptoms that were observed over time, what they were and when they occurred
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Any treatment provided and response
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What healthcare providers were seen and what they did
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What tests were done
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List of key points
Prior to an appointment with a healthcare provider, make a list of the key points you want to make sure you convey. Examples of this may include:
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That the symptoms came on fairly suddenly
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How dramatically different the behaviors are in comparison with their baseline and what the new behaviors are
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That it’s important that the healthcare provider has expertise in Catatonia or is at least familiar with it
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List of questions
It’s often challenging to think of questions on the spot when you are at your loved one’s healthcare appointment. Spend some time thinking about it in advance and make a list of the questions you would like answers to.
Examples might include:
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Do you have experience or expertise in Catatonia? If not, who can you refer us to who does have expertise in Catatonia?
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Are there any tests that should be done to rule out any other diagnoses or underlying conditions (MRI, bloodwork, spinal tap)?
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Would it be useful to perform the Lorazepam (Ativan) challenge?
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Experts in Catatonia use the Bush-Francis Catatonia Rating Scale. Can you go over how the patient scores on the rating scale and can I provide my input?
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What information do you need from me that would be helpful in making a diagnosis of Catatonia if that’s an appropriate diagnosis?
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What treatment options are available and what do you recommend?
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Relevant medical information
Gather all relevant medical information and make a copy to give to the provider, including the following:
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Reports of healthcare providers from prior appointments
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Lab test results (including spinal taps)
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Reports of CTs, MRIs, ultrasounds or other scans
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Reports of EEGs, EKGs or other tests
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Reports from hospitalizations (ER or inpatient)
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Any other reports
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Relevant articles
It may be helpful for you to bring relevant articles about Catatonia to your appointment as many healthcare providers are not familiar with Catatonia.
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You may want to bring one or more of the following articles (or any articles that may be helpful on our resources page):
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Bring someone with you to take notes if possible
When going to a healthcare provider appointment, you may want to bring someone with you to take notes. It’s challenging to be dealing with your own emotions and overwhelm while conveying important information and asking questions. You may not be able to process what the provider is saying or recall later what was said.
Make sure you introduce the person to the provider and let them know why they are there (for example, to take notes and help you remember your questions).
Go over what you need from the person going with you before you get to the appointment. You may want to give the person who comes with you permission to remind you of what you want to say or ask, and to ask clarifying questions if they feel it would be helpful.
12
Ask for permission to take notes or record the conversation
Always ask the healthcare provider if it’s ok with them that you or someone else take notes during the appointment.
If you don’t have anyone else to go with you, you may want to ask if you can record the conversation. It is recommended that you do this with caution as you do not want to alienate the provider or put them on the defensive.
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Other practical issues
Navigating the healthcare system may be challenging enough without having to add more to your plate. You may, however, encounter some practical issues you will need to deal with, including:
1. Insurance
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Your loved one’s insurance may not participate with the healthcare providers who are treating them. Exploring other insurance options may be necessary. It may be helpful to explore this with a medical insurance broker and/or the billing department for the provider to understand what your options are.
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Your loved one’s medical insurance may require prior authorizations or additional information from providers that you may need to coordinate.
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Your loved one’s medical insurance may reject claims for care because of a lack of understanding of the treatment necessary for Catatonia which may require you to coordinate the provision of necessary information to the insurance company.
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It’s important not to ignore medical bills. The provider may work with you for amounts that are yours or your loved one’s responsibility with payment plans, discounts, and/or write-offs of all or a portion of the bill.
2. Consent
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Consent to ECT may be an issue because your loved one is not competent to consent due to their current illness or due to a developmental disability or other disability or illness.
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Consent may be an issue because the patient is a minor.
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State laws and hospital policies will need to be considered. You may need to rely on the healthcare provider’s guidance and/or engage an attorney to help navigate consent issues.
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In some instances, a court order may be required to proceed with ECT.
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Hospital policies may require the agreement of several specialists regarding ECT.
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You may need to engage an attorney to navigate consent issues.
3. Leave of absence under the Family and Medical Leave Act (FMLA) and access to short or long term disability
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If your loved one is employed, you may need to explore disability and FMLA leave.
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There may be a specific required months or years of service before your loved one is eligible for employer FMLA and/or disability insurance benefits.
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The employer’s HR department will help you navigate this process, which will require submitting forms filled out by healthcare providers.
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Individuals who are not eligible for employer provided disability benefits may need to determine whether Social Security Disability is an option. You may need to review the process online, contact the Social Security Disability office, and/or consult with an attorney to navigate the Social Security Disability process.
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Peer caregivers
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It may be helpful to speak with another caregiver who has been through a similar experience. This may help you to navigate through diagnosis or treatment, or provide hope.
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Contact The Catatonia Foundation at info@thecatatoniafoundation.org if you’d like to be contacted by a peer caregiver who has previously navigated the process.
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Post on our Patient/Caregiver Forum and/or review previous posts.
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Explore Catatonia and/or ECT Facebook Groups, including the following: ECT Support Group, Support for ECT, Friendly ECT Support Group, Catatonia, Catatonia and Autism. NOTE: The Catatonia Foundation has not vetted these groups and is not responsible for anything posted in these groups.
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Seek out peer support at the National Alliance for Caregiving.