Sickle-Cell Advocate Group
Donation protected
Sickle-cell Treatment Improvement Advocates
Thank you in advance to all who take the time to read or share this.
The most important goal of this entity is to develop a 24-hour on call group of people who when contacted will show up when sickle cell clients of this group are admitted to a emergency room or hospital. I believe this will benefit a lot of s.c. patients that have to be alone when admitted or have long extended hospital stays with no advocate to speak up upon mistreatment or neglect as far as treatment and pain control. This will also benefit those who do have family or friends that are there but may not be knowledgeable about the modern and most effective treatments, leaving the patient subject to trial and error unnecessarily or to not receive effective treatments or medications promptly.
I’m hoping to develop a group of people who have, and who have dealt with sickle cell for an extended basis and are familiar with caring and truly concerned doctors, hospitals, and affiliates. As well as collecting information from this same group and affiliates about doctors, hospitals, emergency rooms, or clinics that are below par in their treatment of sickle cell patients for whatever reasons, so as to steer the clients in the directions of the most thorough and accomodating medical care. I would like to develop a comprehensive list that can be used to guide people who have sickle cell to the facilities that show the proper concern and compassion for those with this debilitating disease to avoid the undue suffering that I have experienced for so many years. The advocate will also provide support by being present in the most critical moments of the crisis and admission process, as well as giving verbal support and sharing personal knowledge from experience. The advocate will also be trained and educated in treatments and techniques so as to spot mistakes and neglect immediately.
My first crisis was at four years old, it debiltated me so bad that the doctors took action by going to court within the hospital to secure rights to over-rule my parents religious wishes and give me a blood transfusion. I was only hours from death when they won and i recieved that transfusion. That began whats been a life long battle with the most painful and persistant enemy ive ever faced. Ive been hospitalized so many times now i no longer know the number, ive been in almost every hospital in the chicagoland area and surrounding south suburbs. At one point my hospital stays became so frequent and extended they were every month ranging from two weeks to entire months.
Im in pain daily and still experience crisis often, however im pleased to say that the frequency is not quite as bad at this time. It was during my last hospital stay in april of 2015 that i began to contemplate seriously on putting forth the effort to make this idea ive had for some time now a reality. there are many times as a child i had no one there with me in the emergency room or hospital room during my stays. This can be especially unnerving and frightening when initially brought into the emergency room, in severe pain and no one to relate to the nurse or cna what treatments specifically help you, and especially to stay alert and aware of staff actions to see that your treated expeditiously and not neglected or mistreated. This idea only came to me because of how many times i was left for minutes and sometimes hours or treated with no urgency because there was no one to speak up for me and remind them of my pain. sometimes they truly forget or overlook things, many other times it seems they prioritize and even take time to fraternize.
The patients that had family or friends to speak up and remind staff of their need for water, heatpacks, pain meds or even simple things like blankets were the ones helped while i waited repeatedly for significant amounts of time before being brought what i needed or even checked back on. I do not confuse bieng busy or overwhelmed with bieng forgetful or negligent. I know the difference and understand completely when hospitals and staff are extremely busy,and they are ...alot. There are many great nurses and cna's that truly care and do their jobs going above and beyond to help you in any way they can. unfortunately they are extremely outnumbered by those who are lacsidaisical, non-chalant and unconcerned. Sickle cell disease inflicts too much pain to have to deal with someone who doesnt care to bring you what you need as urgent as they can and show just concern for your situation. It was not only myself but MANY, MANY, others inflicted with sickle cell treated the same way, not only on occasion but so regularly it saddened and angered me deeply.
The frustration only made the pain worse and caused what i felt was really unneccesary and undue suffering. it was in these cases i thought that a group of people either with or very experienced with sickle cell, hospital admissions and emergency room treatment of those with sickle cell would be a very welcome asset. these people could be on call to come sit with those clients of the group who have a sudden crisis and have to be admitted staying until they are stable, relaxed and recieving proper treatment. Sometimes just having a friendly face there for support is so much better than bieng alone, even better when that person is familiar with your plight and can speak for you when your in too much pain. There are more complete and detailed aspects of what an advocate group like this can do which are also described further here, but i really wish to get the initial plan up and running where a small but experienced group of people can be gathered and our services offered. The start up would consist of interviewing applicants, creating advocate cards and flyers, attaining a service number and funding for these things as well as wages for the hours these advocates would be with the patients. Transportation and communication devices would also most likely be needed at some point. Any donations i recieve here would go 100% to getting this idea off the ground and becoming a reality. I do not wish to employ myself or gain any profit from this i only wish to aid those who like myself suffer daily and are alone regularly during crisis admissions. I also wish to address the huge void thats there for us with sickle cell as far as support, comfort, and needed specific tailored attention. Id like to not only draw attention to but help provide some options and solutions to the issues i described both above and go into further detail about below. PLEASE FIND IT IN YOUR HEART TO DONATE, ANYTHING WILL HELP, BE GREATLY APPRECIATED AND WILL NOT BE WASTED.
(Further details and description of the larger scope and hope for the advocate group.)
The basis of this idea is to create a group or entity that holds meetings or online focus groups to help ascertain needs and treatment issues as far as medications, hospitals, emergency room treatment, doctors, and prolonged treatments. Their benefits pros and cons, side effects, as well as effects on overall physical and mental health with information received from experiences of people with sickle cell and knowledge of said treatments, medications, and facilities.
Thank you in advance to all who take the time to read or share this.
The most important goal of this entity is to develop a 24-hour on call group of people who when contacted will show up when sickle cell clients of this group are admitted to a emergency room or hospital. I believe this will benefit a lot of s.c. patients that have to be alone when admitted or have long extended hospital stays with no advocate to speak up upon mistreatment or neglect as far as treatment and pain control. This will also benefit those who do have family or friends that are there but may not be knowledgeable about the modern and most effective treatments, leaving the patient subject to trial and error unnecessarily or to not receive effective treatments or medications promptly.
I’m hoping to develop a group of people who have, and who have dealt with sickle cell for an extended basis and are familiar with caring and truly concerned doctors, hospitals, and affiliates. As well as collecting information from this same group and affiliates about doctors, hospitals, emergency rooms, or clinics that are below par in their treatment of sickle cell patients for whatever reasons, so as to steer the clients in the directions of the most thorough and accomodating medical care. I would like to develop a comprehensive list that can be used to guide people who have sickle cell to the facilities that show the proper concern and compassion for those with this debilitating disease to avoid the undue suffering that I have experienced for so many years. The advocate will also provide support by being present in the most critical moments of the crisis and admission process, as well as giving verbal support and sharing personal knowledge from experience. The advocate will also be trained and educated in treatments and techniques so as to spot mistakes and neglect immediately.
My first crisis was at four years old, it debiltated me so bad that the doctors took action by going to court within the hospital to secure rights to over-rule my parents religious wishes and give me a blood transfusion. I was only hours from death when they won and i recieved that transfusion. That began whats been a life long battle with the most painful and persistant enemy ive ever faced. Ive been hospitalized so many times now i no longer know the number, ive been in almost every hospital in the chicagoland area and surrounding south suburbs. At one point my hospital stays became so frequent and extended they were every month ranging from two weeks to entire months.
Im in pain daily and still experience crisis often, however im pleased to say that the frequency is not quite as bad at this time. It was during my last hospital stay in april of 2015 that i began to contemplate seriously on putting forth the effort to make this idea ive had for some time now a reality. there are many times as a child i had no one there with me in the emergency room or hospital room during my stays. This can be especially unnerving and frightening when initially brought into the emergency room, in severe pain and no one to relate to the nurse or cna what treatments specifically help you, and especially to stay alert and aware of staff actions to see that your treated expeditiously and not neglected or mistreated. This idea only came to me because of how many times i was left for minutes and sometimes hours or treated with no urgency because there was no one to speak up for me and remind them of my pain. sometimes they truly forget or overlook things, many other times it seems they prioritize and even take time to fraternize.
The patients that had family or friends to speak up and remind staff of their need for water, heatpacks, pain meds or even simple things like blankets were the ones helped while i waited repeatedly for significant amounts of time before being brought what i needed or even checked back on. I do not confuse bieng busy or overwhelmed with bieng forgetful or negligent. I know the difference and understand completely when hospitals and staff are extremely busy,and they are ...alot. There are many great nurses and cna's that truly care and do their jobs going above and beyond to help you in any way they can. unfortunately they are extremely outnumbered by those who are lacsidaisical, non-chalant and unconcerned. Sickle cell disease inflicts too much pain to have to deal with someone who doesnt care to bring you what you need as urgent as they can and show just concern for your situation. It was not only myself but MANY, MANY, others inflicted with sickle cell treated the same way, not only on occasion but so regularly it saddened and angered me deeply.
The frustration only made the pain worse and caused what i felt was really unneccesary and undue suffering. it was in these cases i thought that a group of people either with or very experienced with sickle cell, hospital admissions and emergency room treatment of those with sickle cell would be a very welcome asset. these people could be on call to come sit with those clients of the group who have a sudden crisis and have to be admitted staying until they are stable, relaxed and recieving proper treatment. Sometimes just having a friendly face there for support is so much better than bieng alone, even better when that person is familiar with your plight and can speak for you when your in too much pain. There are more complete and detailed aspects of what an advocate group like this can do which are also described further here, but i really wish to get the initial plan up and running where a small but experienced group of people can be gathered and our services offered. The start up would consist of interviewing applicants, creating advocate cards and flyers, attaining a service number and funding for these things as well as wages for the hours these advocates would be with the patients. Transportation and communication devices would also most likely be needed at some point. Any donations i recieve here would go 100% to getting this idea off the ground and becoming a reality. I do not wish to employ myself or gain any profit from this i only wish to aid those who like myself suffer daily and are alone regularly during crisis admissions. I also wish to address the huge void thats there for us with sickle cell as far as support, comfort, and needed specific tailored attention. Id like to not only draw attention to but help provide some options and solutions to the issues i described both above and go into further detail about below. PLEASE FIND IT IN YOUR HEART TO DONATE, ANYTHING WILL HELP, BE GREATLY APPRECIATED AND WILL NOT BE WASTED.
(Further details and description of the larger scope and hope for the advocate group.)
The basis of this idea is to create a group or entity that holds meetings or online focus groups to help ascertain needs and treatment issues as far as medications, hospitals, emergency room treatment, doctors, and prolonged treatments. Their benefits pros and cons, side effects, as well as effects on overall physical and mental health with information received from experiences of people with sickle cell and knowledge of said treatments, medications, and facilities.
Organizer
Vernon smith
Organizer
Harvey, IL
