The treatment of patients

[SickleSupporter]

I had a family member with SCD that recently passed away. She was treated horribly and everything was a struggle. The care she received made living impossible. I would love to find somewhere to share her experiences and try to change the level of care that patients receive so that they can live longer and have better quality of life. Has anyone ever been on a talk show, the radio or wrote to the medical board?

[ahullum86]

My husband was a Sickle Cell Warrior. He was treated so unfairly in the health care system and he suffered a horrible death February 6 2018. It was heart breaking to see him treated like a drug addict. In medical records I was reading last night I found that he was given Narcan on both of his last times to the hospital. I only have pulled this year's records but I was shocked to see that they had administered Narcan to him, neither of us knew about it. He always asked when he was coherent what medicine they were giving him and what it was for. Then later down I read that they also gave him Ativan during his last hospital admission for anxiety. The hospital, doctors and nurses failed to see that if they would have controlled his pain and correctly treated acute chest syndrome then he probably wouldn't have been non complainant or unresponsive. Instead they ignore his known need for pain medicine and slip him other drugs. I am trying to find out how to honor my husband and I now have a passion to help others suffering from this horrible disease.

[Cya1117]

I would advice to find a support group in the state your in and speak to the to see what can raise awareness. Sometimes the care depends on the level of acknowledge of the hospitals. Here in Virginia in the area I am in we have about 8 hospitals in which only one is aware and deals with sickle cell patients but this is a huge hospital connected with a university that studies internal medicine and other medical conditions. Hope to help! Sorry for your lost.

[jo19]

Hi SickleSupporter I am sorry to hear about your family member's experience before the person passed. Unfortunately, most of us have that experience regularly. The reasons vary from medical professionals not having proper knowledge of the disease to familiarity breeds contempt due to us attending hospital numerous times to being treated as a drug addict. To many of us, the hospital becomes a distressing environment. Despite v few hospitals specialising in sickle cell, even those few can still treat patients badly. My last hospital stay was so upsetting that I left despite not feeling better. That has happened so many times. And as a patient it is so hard to fight back because of being so ill. A lot of times, I have had to fight for my painkillers or not fight and just cope with the pain. There are lots of small groups for support, but sickle cell in the media is still very rare compared to other diseases. Hopefully we are able to come together on a larger scale and change our treatment for the better. Anyone know if there's a podcast for sickle cell?

[tyina in reply to jo19]

So sorry to here what you have been going through .My heart goes out to you My daughter suffered with full sickle cell. And many times we would have to remove her from the hospital as she would be in so much pain screaming at night thst we would discharge her from hospital to go to another so thst she can get the pain killers. I know strong pain killers are not good but if one is in so much pain that you feel your being toreturned. Then I think one needs to be given some pain killers. As one will most probably die with the amount of pain she had she could not survive anyway if she had not been given pain killers.