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Expect More – Take Control of Your Health Care 

Part 4 in Series

By UOAA Advocacy Committee

“Details matter. It’s worth getting it right.” ~ Steve Jobs

The Buck Stops Here

Since UOAA started the advocacy campaign we have been stressing that YOU are your own best advocate.  This may be hard to believe since the whole business of insurance is so overwhelming that it feels like a David and Goliath story.  Like anything else, once you understand the rules of the game it makes it a lot easier. You actually have a bigger part in the game then you may know.  Often consumers of medical care, patients, people like you, think that everyone knows their story. You are asked a million questions every time you pass through the doorway of any hospital or doctor’s office and everyone is writing things down.  How many times do you have to tell your story? Answer: as many times as it takes to get the results you want. Unfortunately, the goal of great communication among the players in the healthcare game has not been reached, and all these computers do not talk to each other as much as you think. So what this means is that you have to make sure that everyone knows the important parts of your story and that they understand what you need.

So it goes like this, the people who pay the bills want to make sure that the money that is paid is according to their rules; that is, for a medical reason.  So the people who are asking to be paid have to explain that the service or supply is medically necessary. For example, the company that sends out your supplies (ostomy supply distributor) has to be able to say that you need the supplies because you have an ostomy, what kind of ostomy you have, why you have an ostomy, and when you had your surgery.  Then if you have Medicare they have to ask you questions to make sure someone else is not giving you supplies (like a home care agency or nursing home or hospital) because Medicare doesn’t want to pay double. The doctor or physician’s assistant or nurse practitioner has to report some of the same things plus show in their notes (your medical record) they have spoken to you about your ostomy and what you need for your care.  This is where you come in; you have to make sure your doctor knows what you need and why, even though your doctor may know very little about ostomies.

Get More Involved with your Doctor in Your Healthcare

A good suggestion is to visit your healthcare provider (doctor, nurse practitioner, physician assistant) at least once a year and provide a supply checklist which includes all the supplies you need (with the product numbers), and what type of ostomy you have. At this visit discuss what has happened in the last year; for example, you had a yeast infection around your stoma, you went to the emergency room for an obstruction or dehydration, you developed a hernia around your stoma, you gained or lost weight and had to change your type of ostomy product… This is the kind of information that needs to be in your medical record.  Your medical care provider may then give you a referral to an ostomy nurse at a wound or ostomy clinic, or a dermatologist or may just write it down in your record so when the insurance company wants to know why you now need a belt or a different kind of pouch or a greater quantity of pouches, they will know why.

Medicare has done research to figure out how many supplies an “average” person with an ostomy usually needs. If what you need is different, then your doctor must include information on your medical condition to support the need for the type and quantity of items ordered.  If you are working with a nurse who is specially educated about ostomies, the nurse may also be able to help you by writing down why you need different supplies than the average ostomate and give that information to your doctor to put in your medical record. This information in your medical record can then be given to your ostomy supply company and or your insurance. It is then the responsibility, under Medicare guidelines, of your supply company to get this information from your medical provider.  

An example of a special situation that would require additional supplies might be that your skin is irritated from frequent leakage of your pouching system due to your stoma being flush to the skin or below the skin. You require frequent pouch changes until your skin can heal. Any request for supplies more than the average amount is marked for review.  Just because a person “wants” more is not a good enough reason and those requests for supplies (claims) will be denied. You might have to have detailed notes in your medical record about why you need to use a convex wafer or pouch (such as because you have a stoma which is below skin level, or the stoma opening is at skin level).

Medicare has specific guidelines for the coverage of ostomy supplies, including that they be used exclusively for colostomy, ileostomy or urostomy management.  Ostomy pouches being used to manage fistula or wounds are not covered under Medicare guidelines.

Be aware that suppliers will not receive payment from Medicare for the items that are ordered if your physician did not provide the proper detailed information from your medical records when it is requested or if your detailed written order (prescription) is missing information like a signature. Furthermore, not providing this information may result in you, the patient, having to pay for the item yourself.  Note that your doctor’s cooperation is a legal requirement as outlined in the Social Security Act, the law governing Medicare.

To help you better prepare for your next office visit, please use this new checklist resource.

Pay Attention to the Details

The details are important, sometimes a date is wrong, the type of ostomy is wrong, the code for your diagnosis has a number missing…your insurance was not recorded or was recorded incorrectly, the doctor didn’t sign the note. Those things are minor and require a little detective work.  So if you have a request (claim) denied you may have to be a detective. You can speak with someone at the company who provides your supplies (ostomy supply distributor) and ask them to help you understand why your request (claim) was denied. Maybe together you can discover that a number was off or incomplete information was submitted.  Another example of an ostomate taking control of their healthcare is to not assume that your supplier has the proper documentation, but to ensure that your file at your supplier does include all of the necessary information. Ask your supplier for a copy of this documentation including prescriptions.

The same thing may be true with your doctor’s office, a request for supplies may have been denied because the information needed was not given to the insurance company or supply company. So then you need to speak with someone to discover what was missing. Sometimes the problem can be found, corrected and then the supply company can resubmit with positive results.

If you receive a denial, you have the right to appeal. The appeal usually has a time limit attached so follow the instructions for an appeal and respond that you want to appeal the denial.  If you have non-Medicare insurance you may be able to speak with someone at the insurance company about your denial to figure out why your request was denied as part of the appeal process. You may also contact your insurance customer service and request a case manager to assist with your supply denial.

If you have Medicare, for assistance you can contact your local representative from the  Beneficiary of Family Centered Care – Quality Improvement Organization (BFCC-QIO) or call 1-800-MEDICARE to help you understand the appeal process and determine what is still missing from your record. Your supply company may also be able to help you.

Do You Know What’s in Your Medical Records?

You have a right to request a copy. In 1996 the Health Information Portability and Accountability Act (HIPPA) was passed. It is the law that protects patients’ health information from being shared with only those who have a need to know. It also states that patients are allowed access to their health records.  Your medical record is not just your doctor’s office records, it includes hospital, nursing home, or home health agency (HHA) records, and records from other healthcare professionals including, but not limited to, nurses, therapists, and social workers. Here is a great video example of advocating for yourself and knowing what’s in your record.

Each state has its own laws about what is required to get copies of your medical records. Check with your medical provider/facility for their policy on obtaining your medical records.

Conclusion

To avoid claim denials, long appeal processes, costs to you, or the possibility of not receiving your ostomy supplies, you need to make sure that:

  1. Your supplier is submitting correct information and up to date medical records to your insurance company (or Medicare); and
  2. Your physician keeps up-to-date medical records about your health, your ostomy and your supplies in your medical record.

Just recently ostomy advocate Megan, The Front Butt YouTuber, tweeted, “Currently going through some of my medical records. Found several pieces of misinformation, which I cleared up in visits and it was marked incorrectly. Yet, they are still present on my record. Again, patients are NOT being listened to.” (9/4/18 Twitter) Kudos to her for taking an active role in her healthcare, and going through her medical records. Self-advocacy is ongoing and no doubt she will be bringing this up again until it is CORRECT!

Remember that you have the right to change physicians and the right to change your ostomy supply company if they are not working with you.

It’s time to take control of your health. You deserve high-quality care.

Expect More – Take Control of Your Health Care

Part 1 in Series

By UOAA Advocacy Committee

This first article is about finding your voice as you take the initiative to speak up, or act on your own behalf, to encourage change that will bring improvements in your quality of ostomy care, and ultimately, your quality of life.

We are all unique individuals and regardless of having a medical condition such as an ostomy some people by nature are outgoing while others are more naturally shy and timid. Some people are overly confident while others lack self-esteem. We are who we are; however, when it comes to your health and well-being, if your gut is telling you “this isn’t normal” or something is wrong or you just don’t plain “get it”, don’t be afraid to speak up. There is power in your words. Yes, this can be easier said than done for many, but realize there is no shame in asking for help. It can be a challenge to balance being assertive while not being overly demanding.

Ask yourself the question – do you think you are capable of producing a change? How do you create change in your life? For example, if you are experiencing pain and sores on the skin around your stoma – are you accepting this as normal and trying the best you can to manage it on your own because you don’t want to bother anyone? In contrast, are you someone that would call your doctor, seek resources to find help and not accept this as normal? It is good to try to be self-sufficient but if you are still suffering and in pain then a positive change has not happened. What can you do to strengthen your voice, and be a participant in your self care? The belief that you can make a change is called self-efficacy. It is a little different than being self-confident in that you truly believe a change will happen and you won’t stop seeking help until that change has happened.

Some people also fear that by speaking up and questioning their healthcare providers, that they will find them annoying, stupid, needy or unlikeable. Healthcare professionals are held to high medical standards and they want to help their patients. They understand that this is new to you and that you are trying to understand your medical condition. They also need you to understand your treatment plan, so that it can be a success. There is absolutely no reason to feel embarrassed. Remember, if you do not ask your questions or express your concerns, you remain uninformed and that is a fearful place to be. You want things to get better not stay the same.

FIND YOUR VOICE: 10 Questions To Ask Yourself

When it comes to medical situations, many people become tongue-tied or have difficulty expressing themselves. UOAA recognizes that it is not enough to just tell ostomates to self-advocate, but rather we need to provide you with the tools to do so. Self-advocating can be a positive experience.

Below are 10 questions and simple solutions that will help you find your voice:

1) Are you nervous, anxious or confused about your medical condition?

People who do not feel confident in their understanding of their medical condition feel fearful. Once they are educated about their condition, they are more confident to speak up. The information in this blog post and UOAA’s ostomy information and educational resources can help you gain confidence and if you are just starting your ostomy journey it can give you a sense of control in a time of uncertainty. “Knowledge is power.” ~ Sir Francis Bacon

2) Do you just defer to the expertise of medical professionals or do you participate in decision making?

Many people assume they have no role in their care. They just leave it in the professionals’ hands. In reality, you play a very important role. Medical “lingo” is very new to people – people who don’t understand it do not feel confident in speaking up and feel intimidated by medical professionals. Most people are afraid to say – I don’t understand what you are saying. Make a list of what you do and don’t understand to generate the proper questions to ask.

3) Do you think you are the only one in the world having these issues and concerns?

People who feel alone do not speak up – once they find others such as with a support group – they feel more confident and less isolated and alone. Here you can get a role model or peer to guide you along the way. It’s comforting and insightful to hear from people who share similar experiences. Chinese proverb: “To know the road ahead, ask those coming back.”

4) Do you have low self-esteem and sometimes feel that your life doesn’t matter?

People with low self-esteem tend to not speak up. They tend to remain silent or let other people do the speaking for them. When someone has low self-esteem, it is hard to see his/her own worth or recognize that his/her opinion matters. Self-esteem is further affected by a life-altering/body altering illness such as ostomy surgery. Take steps to feel better about yourself or if needed, seek counseling.

5) How can advocating for your healthcare needs (or other things in your life) really change your life in a positive way?

Consider the impact on your life. Make a list of pros and cons for speaking up. If the pros outweigh the cons, it may be worth it to speak up and improve your life in a positive way.

6) Do you have a concern or health issue with your ostomy, but your doctor or nurse pushes it aside and tells you not to worry about it?

Are you the type of person if you are worried about something, but your doctor doesn’t mention it, then you assume it must not be a concern so you remain silent? If you are unsure or disagree and it is affecting your quality of life, then get a second opinion by another expert. Listen to your gut. It’s important for you to feel safe and secure in your own body, and you certainly don’t want the problem to get worse (or it might truly be nothing to worry about!). It always feels better to have your concerns addressed in a way that makes you feel that you have been heard.

7) Do you find yourself rushed or brushed off when you are at an appointment with a medical provider?

We all agree that medical professionals are busy and are often running behind schedule. The good news is that often this occurs because other patients were asking questions during their appointment! They were speaking up! You deserve their time too. Write down your questions before you arrive and be sure to take out your list and go over every single question you have. Remind yourself – this is your visit, this is about YOU, not the doctor. Also, the next time you call to make your appointment tell the office staff that you will need some extra time to discuss all of your concerns and evaluate your situation especially if it is a complicated issue.

8) Do you feel like you are just another ostomy patient in a long assembly line and feel that there is no real care for YOU, a unique and individual person?

If you consistently leave the office feeling worse than when you entered and with unanswered questions, then it is time to consider finding a new provider and seeing someone else who will make you feel comfortable to ask questions and take the time to listen and respond. This holds true even if it’s a referred provider who is supposedly the “best” in the field. It’s important to have a good relationship with your provider. Quality ostomy healthcare is a team effort and communication is critical.

9) Have you ever looked back and kicked yourself for not saying something?

It’s better to speak up, than have regrets later, especially when it might be something as serious as your health and well-being. Your doctor has many other patients and concerns on his/her plate so don’t run the risk that they will remember everything about you or what was discussed at your last visit together. You know your health history. You are the person experiencing the symptoms or whatever the issue is. It is absolutely your place to express your concerns.

10) Do you sometimes draw a blank or choke under pressure and miss out on speaking up?

Keep an ongoing list of your questions and concerns prior to meeting with your medical professional. Practice the conversation that you want to have by role-playing with a family member or friend acting as your doctor or nurse. Practicing will help instill confidence in what you want to say. You can also decrease stress by bringing your questions with you and reading them from your paper. That way you are sure that nothing is forgotten. “Asking for what you need, what you want, and what you’re worth requires practice. So practice self-love and start asking.” ~ AnneMarie Houghtailing

FIND YOUR VOICE: Expect More Examples of when you or your Advocate should speak up!

IF YOU CAN’T FIND YOUR VOICE; BE SURE TO GET AN ADVOCATE

We realize that having major surgery can be overwhelming. Be sure to find someone who can help you along the way. Sometimes you might “lose your voice” especially after surgery, from medications, or just being overwhelmed. Your advocate should be someone close to you, whom you can share your deepest fears and concerns with, and HAS A VOICE, and can speak up for you when you can’t. Your advocate can ask questions for you or simply listen and take detailed notes so you can recall and understand later.

SPEAK UP!

If English is not your primary language, you have a right to an interpreter. All hospitals are now required to have interpreter services either in-person or via web connections provided for you.

In conclusion, we know that ostomy healthcare is not perfect and inconsistent in our country. When it comes to your healthcare, don’t be shy. You must harness the power of your own voice and share your concerns, desires, and opinions; because if you don’t, who will? Remember that you matter! You are important! Self-advocacy isn’t a “one and done” deal. It’s an ongoing process from before you have your surgery thru the ongoing continuum of care of your ostomy or continent diversion.

Speak Up! Ostomy and Continent Diversion Patient Advocacy Resources:

(Note – Although we focus on finding your voice with regards to healthcare, you can use these self-advocacy tips in other areas of your life as well.)

By Jeanine Gleba, UOAA Advocacy Manager

The overall goal of the UOAA Patient Bill of Rights (PBOR) initiative is to ensure high quality of care for people who had or will have ostomy or continent diversion surgery. To accomplish this it’s important that patients and families actively participate in patient health care.

According to CMS an integral part of the U.S. Department of Health and Human Services’ (HHS) National Quality Strategy is the CMS Quality Improvement Organization (QIO) Program. It is one of the largest federal programs dedicated to improving health quality at the community level.

Under the QIO program there are two Beneficiary and Family Centered Care-QIOs (BFCC-QIOs) who help Medicare beneficiaries and their families exercise their right to high-quality healthcare. The two BFCC-QIOs are KEPRO and Livanta and they serve all fifty states. BFCC-QIO services are free-of-charge to Medicare beneficiaries.

Depending on where you live (Locate your BFCC-QIO) they are available to help Medicare beneficiaries and their families or caregivers with questions or concerns such as:

• Am I ready to be discharged from the hospital?
• Should I be receiving needed skilled services such as physical therapy, occupational therapy, from a home health agency, skilled nursing facility, or comprehensive outpatient rehabilitation facility? (Care from a certified ostomy nurse is a skilled service.)
• I’m concerned about the quality of care I received from my hospital, doctor, nurse or others.
Examples of quality of care concerns that pertain to our PBOR include but are not limited to:
• Experiencing a change in condition that was not treated (such as skin infection around stoma)
• Receiving inadequate discharge instructions (such as inadequate individual instruction in ostomy care, including the demonstration of emptying and changing pouch or no instruction on how to order ostomy supplies when you leave the hospital)

*Why should Medicare Beneficiaries contact their BFCC-QIO with concerns?

First, BFCC-QIOs can help when you have a concern about the quality of the medical care you are receiving from a healthcare facility (e.g. hospital, nursing home, or home health agency) or professional. You can also file a formal Medicare complaint through your BFCC-QIO.

Furthermore, according to CMS, when Medicare beneficiaries share their concerns with their BFCC-QIO, they help identify how the health care system can better meet the needs of other patients. Beneficiary experiences, both good and bad, give the QIO Program the perspective to identify opportunities for improvement, develop solutions that address the real needs of patients, and inspire action by health professionals. This is what we are working towards achieving with our PBOR initiative. This is a resource to help the UOAA community make this happen.

Last, Medicare beneficiaries have the right to file an appeal through their BFCC-QIO, if they disagree with a health care provider’s decision to discharge them from the hospital or discontinue services, or when they have a concern about the quality of the medical care they received from a health care professional or facility.

*When and who should Medicare Beneficiaries contact?

A Medicare beneficiary can call 1-800-MEDICARE or your Local State Health Insurance Assistance Program (SHIP) if he or she:

• Has general questions about Medicare coverage;
• Needs clarification on how to enroll in Medicare;
• Wishes to discuss billing issues.

A beneficiary can contact their BFCC-QIO if he or she:

• Needs to discuss the quality of care received;
• Wants to file a formal quality of care complaint; or
• Needs help to understand his or her Medicare rights.

While BFCC-QIOs are the primary point of contact for Medicare beneficiaries and their families, when necessary, quality of care complaints can also still be made by calling 1-800-MEDICARE.

For those interested in learning more about what to do if you have a concern about the care you received while on Medicare, please refer to this FAQs page produced by CMS.

Be involved in your healthcare and if you are a Medicare beneficiary, take advantage of this resource to self-advocate and ensure a better outcome for yourself.

*Source qioprogram.org

Taking a stand for better ostomy healthcare

By Jeanine Gleba, UOAA Advocacy Manager

United Ostomy Associations of America (UOAA) is an organization that empowers people to get the care they deserve to live life to the fullest. The poor quality of ostomy care received by some in our community limits those lifestyle choices. For people living in the United States with an ostomy or continent diversion healthcare delivery is unequal. A person with an ostomy should be treated as seriously as someone living with diabetes. At hospital discharge, it would not be safe or acceptable for an insulin-dependent diabetic to be incapable of giving themselves an injection, self-managing their diet and blood sugars, and obtaining their supplies. It is not safe or acceptable for anyone living with an ostomy to be discharged without knowing how to prevent dehydration and not have access to care and supplies to live a healthy active life. We can’t let the words “quality healthcare” become meaningless buzzwords for those facing this life-saving/ life-changing surgery. The time has come to take a stand.

To get the ball rolling UOAA recently revised the Ostomy and Continent Diversion Patient Bill of Rights (PBOR), which has become the foundation to stand on, to SPEAK UP. The PBOR states the details of the care people with an ostomy should expect to receive initially and during their lifetime. It calls for healthcare professionals who provide care to people with ostomies, to be educated in the specialty, and to observe the standards of care. It is a guide for patients and families to be active partners in their care, to know what is reasonable to expect so they can collaborate in their care and get the outcomes they deserve.

UOAA has taken the lead to generate this change by promoting the new PBOR and its use. We are excited by the response and support we are receiving and know we can continue to make big strides.

So the little PBOR “snowball” rolling down the hill is gaining momentum and is poised to impact the barriers for people who live with ostomies and continent diversions in America. Be a part of the change, download the PBOR and the Top Ten Ways to use it. Step up and spread the word.