Tag Archive for: patient advocacy

‘UOAA Has Been A Lifesaver for Me’ Says New Ostomate

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When first presented with having a “bag” I was terrified. I had a lot of questions…. How will I wear my clothes? Will I still be able to run or lift weights? Will I ever date again? How can I go to the beach? And so many more. I really was not familiar with this at all.

How UOAA Helps: Connie contacted UOAA before surgery earlier this year and is now on the path to health and happiness in life with an ostomy. Donate to help the next ostomate in need.

I did my fair share of googling, but there are so many conflicting pieces of information out there. I also joined some Facebook groups to find some support.  That proved to be very confusing and often quite discouraging. In February of 2023, a week before my surgery, I met with an ostomy nurse for the first time.  That is when it hit me.  She showed me a practice stoma, put my markings on, and had me look in a mirror with a bag.  I realized I needed more information in order to navigate this the best I can.

Finding UOAA

I came home and searched for ostomy support groups in my area and found one. I immediately connected with them, and they shared UOAA’s information with me. I then went on to their website ostomy.org to gain as much knowledge as possible. I went into surgery with a positive attitude because I knew my life would be so much better afterward.

The people I talked to at UOAA’s office were so helpful! They answered all my questions, and I had a lot!  They directed me to many resources like a New Patient Guide and sent me links to videos and other information which I still use. It is reassuring to know that I can reach out with questions and that they will be there for support.

UOAA has been a lifesaver for me. I was overwhelmed following my ostomy surgery. I am so excited that I am feeling better. I am so appreciative of the connections I have been able to make and the educational materials I have received by contacting UOAA.

On February 23, 2023, I had surgery for an end ileostomy, total colectomy, rectopexy, and hernia and bladder repair. After a lifetime of being a prisoner to my colon and GI tract, a ton of medications, and a ridiculous daily twelve-hour ritual that dictated my days, I finally was given hope to improve my quality of life. The day after surgery I already knew this was the right thing for me, and I somehow felt “free” of all the meds and issues I had before.

Helpful Free Resources

UOAA sent me a welcome packet in the mail with a ton of info about nutrition, living with an ostomy, exercise materials, you name it. The coolest thing was the card to use with TSA when I fly… that is going to be a lifesaver, I think! I had many questions about getting back to my normal activities, and I was sent links to Youtube and even Instagram of people that have ostomies and have resumed, or even surpassed, their pre-ostomy fitness routines.

My experience has definitely been better with my local ostomy group and with UOAA by my side.

A link to an occupational therapist was also helpful. I started following and connecting with many of these people, as I have found inspiration in them. I have since called UOAA several more times seeking answers to my questions, concerns, or even worries. Each time they have promptly responded and provided me with continued optimism as I begin this ostomy journey.

UOAA Helped Me Feel ‘Normal’ Again

I think that the biggest thing is that UOAA helped me to feel “normal” and that I am not alone in this.  Starting out with an ostomy is pretty scary, and there are a lot of unknowns. So much of what you read is negative from people that have had problems or are just very discouraged with their situations. UOAA shares the successes, the positives, and the education so that you can learn and grow each day knowing that you don’t have to give up anything at all.

For me, I plan to get back to my full fitness routine once I am fully recovered. I already feel healthier than I have for so many years.  But I know I still have a lot of learning to do… from appliances (I still can’t figure out the best ones for me), to the different types of foods to eat, to stoma care (I still always want to make sure everything is okay), to traveling, exercise, clothing, wraps, connecting with other people with ostomies, and maybe even dating again in my future. My experience has definitely been better with my local ostomy group and with UOAA by my side.

Grateful to Learn More at the National Conference this Summer

I’m also very thankful to have been awarded a CARES scholarship (FYI, current scholarships have been filled) to attend UOAA’s National Conference in Houston. This assistance will allow me to continue on my journey in a healthy and positive way.

As a single 57-year-old mom, I have three grown children (one still in graduate school), a new granddaughter, and two younger children I adopted, one with unique medical needs – it has not been easy. Last year’s hurricane, coupled with the astronomical surgery costs, have me struggling greatly on a teacher’s salary. I have worked really hard to provide for other people, and I’ve never really done for me.

This conference is something I feel is important for me as I want to be able to live my life to the fullest. I strive to be the best Nana, mom, and person I can be. I want to embrace my body, my life with an ostomy, and continually improve my quality of life.. It will allow me to move forward, make connections, gain much-needed knowledge, be an advocate for myself and others, and to stay “OSTOMISTIC!” 

One day I can even envision myself advocating for others in the ostomy world, being active in the ostomy community, and I would love to get to the point where I can even be an inspiration to others.

Connie, you are already inspiring to those of us at UOAA.

Please Donate to UOAA to put other people like Connie on a successful path.  Support quality of life resources, education and advocacy for people living with an ostomy or continent diversion. United Ostomy Associations of America inc. (UOAA) is a 501(c)(3) nonprofit organization and all donations are tax deductible. Thank you!

Shared by Connie Pollina of Naples, Florida

Find Your Voice (10 Questions to Help You Speak Up)

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.)

Quality of Care Resource at the Centers for Medicare and Medicaid Services (CMS)

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

Tag Archive for: patient advocacy

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