a community of those living, loving and surviving Sickle Cell Disease
Meet Akimie: Artist, Runway Model, Warrior
Meet Akimie: Artist, Runway Model, Warrior
Posted 15 hours ago

Ever wondered if you could be a working model in NY with sickle cell? If Akimie can do it, so can you!

Meet Akimie: Artist, Runway Model, Warrior
Success Begins with You!
Success Begins with You!
Posted 3 days ago

Tosin explains how you can have a successful and happy life with sickle cell. Once we shift our mentality, we all can achieve all our goals and dreams.

Success Begins with You!
Meet Clarissa: The Warrior Behind of HeartofGold.org
Meet Clarissa: The Warrior Behind of HeartofG…
Posted 3 days ago

The creator of the Heart of Gold foundation shares her inspirational journey with sickle cell below. Read on...

Meet Clarissa: The Warrior Behind of HeartofG…
Meet Kandis: Mom, Nurse and Warrior
Meet Kandis: Mom, Nurse and Warrior
Posted 5 days ago

Meet Kandis, an intrepid and determined young lady. Even with AVN and sickle cell, she has accomplished all her dreams and strives to inspire others.

Meet Kandis: Mom, Nurse and Warrior
Sickle Cell Free: Life After Stem Cell Transplant
Sickle Cell Free, Part 4: Life After Stem Cel…
Posted 6 days ago

This is the finale of the interview with Raheem C, the sickle cell patient who underwent a stem cell transplant and is now sickle cell free! Congratulations Raheem! Live free…

Sickle Cell Free, Part 4: Life After Stem Cel…
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Tosin's Corner

Checking In…

Checking In…

Hello everyone, It’s been a few months since I posted on here. First of all I need to apologize for the silence. I know that it may have been very frustrating to come here with no new updates. Since October, I’ve faced alot of challenges [continue reading...]

Setting Goals

Setting Goals

For those of you who haven't zeroed in on your purpose in life, this is a great exercise when you have the time. Often we have 'mental lists', but an actual physical list gives you something concrete, something that you can check off, and something [continue reading...]

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Filing a Complaint in the Hospital

Most of us can trade war stories from hospitalizations and emergency room visits. It doesn’t matter where you are in the world, invariably, once you are in a sickle cell crisis, a healthcare professional is going to treat you…well, NOT with tender loving care. In these moments, don’t throw a pity party for yourself, stick to this plan, and create a wave of change. YOU can change how sickle cell patients are treated at your facility—remember, the squeaky wheel gets the most oil.

Most healthcare professionals are great, and most sickle cell patients, we tend to cut you alot of slack. We understand that ERs are busy, and that nurses/doctors are overworked and stressed out—but seriously MDs/RNs, it sucks to see you treat us like pond-scum while the patient in the next room with a splinter in their finger is getting all your loving and adoring attention. I don’t get it, even though I’ve worked in the hospital for 10 years.

So how do you move past a difficult situation, in which you are treated like absolute dog-crap, denied basic human dignity and respect, violated or assaulted verbally (or sometimes just out of earshot), given blank stares, a nasty attitude or rolled eyes? How do you prevent this from ever happening to you again?

1. The most important thing is that you cannot descend to the same level. Even though your body is screaming in pain, the insult might be so humiliating that you might want to slap a nurse, punch out a doctor, or curse them out. But please dears, try to take the higher ground. I usually try to give everyone the benefit of a doubt, because I know that my emotions are heightened, I might be doped up, I’ve dealt with traumatic hospitalizations in the past, and I’m slightly…er okay, VERY jaded and cynical when it comes to the hospital/emergency room. So do what you must to stay zen. Count to 10 (or 1000), say a prayer, cry quietly, listen to your iPod…something that helps you center yourself.

2. Document everything!: I know most of us like to rely on our memories, but paper and pen is the best way to keep an incident fresh and succinct. Plus, it creates a record of a pattern if it is the same individual treating you badly over and over again.  Write the Time, Who, Why, What and How.

For example, At 300am, I rang my call bell, noone answered until 330am, then they said my nurse Joe was at lunch. The other nurse, Mary, refused to give me anything for pain until Joe came back. So I was in excruciating pain for 1 hour.’

When filing a complaint, your allegations must be specific and detailed as possible. You can’t just say, “That nurse treated me badly,” you have to be able to explain exactly what was said, done or not done.
So writing things down will help you keep it all in check and jog your memory for when you take the next step. It will also help you not ramble, when your pain meds do start to kick in.

3. Ask for the Hospital Supervisor/Patient Relations Officer. The nurse/doctor might get huffy with you and not want to give you the number, but you are entitled to it. Usually, the Patient Relations phone number is printed on one of those documents you get when you are admitted into the hospital. Or just pick up the phone and dial zero, and ask the operator to send you to the Nursing Supervisor/Nurse Manager.  You can still file a complaint even if you have been discharged, you just have to call the Patient Relations/Customer Rep instead.

For hospitalized patients, I recommend going straight to the Nursing Supervisor instead of the Charge Nurse.
The charge nurse is usually a floor nurse herself, and won’t want to discipline a member of her team. So she will come up and placate you, but very little will get done. The Nursing Supervisor is the boss of all the nurses working that shift, and she doesn’t usually have personal affiliations that tie with getting her job done. The Nurse Manager is the boss of all the nurses on that unit, and she’s the one that hires and fires people.

4. Leave a Voice Message: If noone picks up (as is the case with hospitals), leave a message with your full name, Medical record number, what Unit you are on, your room number and phone number. I like to use my cell phone so that in case I get transferred/discharged, they can still reach me. Do not go into detail about what your issue is, just say something like, “I am in the Emergency room right now and I feel like my patient rights have been grossly violated. I can be reached at 757-457-7757.”

5. Know Your Rights: If the problem is so huge that you feel uncomfortable or vulnerable with the nurse taking care of you, it is within your rights to request for another nurse. This is something that you can do through the charge nurse. Most times, the Nurse #2 will go out of her way to compensate for the erroneous ways of Nurse #1.

6. File A Complaint: Usually, the Nursing Supervisor will come up to see you in a few hours. The Patient Representative might not arrive until the next business day, usually between 9-5. By now you should have all your issues summarized. They will ask you what went wrong, and you can launch into your litany of complaints. Be sure to get the contact information (full name, job, phone, email) of whom you spoke to. If you have been discharged, they will also followup with you at home. Tell them what happened, and be sure to emphasize that their hospital’s reputation is on the line. I once filed a complaint with Patient Rep, and the issue was so awful that the VP of Operations and the Chief Nursing Officer both came to apologize profusely to me the next day. For the rest of my stay, I was treated like royalty, and never had an issue with pain management, meals or anything again.

7. Follow Up: The Patient Rep/Nursing Supervisor will usually engage disciplinary action on the individual through the nurse manager or Medical Director. You can call/email them a week later to see what the status of your complaint is. They might not tell you anything new, but at least that way, if they shelved your complaint, it will resurface again with your followup call and this time hopefully get taken care of.  Sometimes, the hospital might have been having issues with that particular doctor/nurse, and your complaint is the one that will send them packing. You never know.

If you filed a complaint every single time you were treated badly in the ED/Hospital, eventually, the healthcare professionals will know your necessities/proclivities and send you only the very best, most understanding and most compassionate nurses.
Trust me, no one likes to get written up. It becomes a permanent blight on their employee record and a huge dent to ones’ ego. They will be on their very best behavior from here on out when it comes to you warrior! You can create the nurturing environment that you deserve when you are sick, you just sometimes have to firmly create it yourself.

Good luck!

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Interview with a Medical Doctor with Sickle Cell Disease

Interview with a Medical Doctor with Sickle Cell Disease

Ever wondered if you could be a doctor with sickle cell? Well you can follow that dream. Dr. Y. explains to us how she went through medical school and became a physician. [continue reading...]

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