As I was free, I was thinking about the powerful words that American novelist Toni Morrison and she spoke to O-Oprah Magazine in 2003. If you have some power, your job is to empower someone else. This is more than just a grab bag candy game. ”
In the spirit of these words, I am not writing what I was writing today, and I am not writing what I want to say to you, but it is the most urgent and relative.
When I got the phone, I was adjusting for the fact that despite three previous incidents, at least three emails had sent emails to management and had been administering the wrong medication several times in a few months at the dialysis centre despite several face-to-face conversations. It was the same wrong drug every time at the exact same stage of treatment. Repeatedness filled me with a sense of despair that reduced agency and reconciled with this curious space. You are standing in the room with someone in power, and you are screaming to hear, but the words bump into what turns out to be a soundproof wall.
What's even worse, words like “anxiety” can be thrown at you. You need to be aware frequently. So the words will turn backwards, hurt you and strangle each other.
These suggestions for change can be implemented within a few days. Color-coded systems pay attention to detail
There's no room for anything else.
This was not where I had never been before, but this treatment, fatigue, medical errors were repeated – as if I had never spoken, it was difficult to understand. At this point, trying to survive, I looked like I was becoming Radames in the final scene of Verdi's Aida, but no one was waiting for me.
Now I am free to act that saves the life of another person.
Why write about this tough experience after being saved? Because, like Toni Morrison said, this is not a Glove Candy game. I'm thinking about freedom – a small amount that can be given to someone on dialysis – and I'm free so I want it to be for others as well. No one should get caught up in a kind of samsara that has just been accepted as a function in some parts of Ireland's health services.
Everyone deserves better.
In 2023, according to the National Kidney Bureau, there were 2,191 people on central hemodialysis and 294 people on home dialysis. Each of these people deserves perfect security, supervised and clear security and safety of care. I'm sure they're getting it in some places, but I know this isn't an experience anywhere. One of the things that solidified the need to write this is the almost impeccable care I received at a transplant center.
It can be done, done well, done with dignity, done in Ireland.
My time came back to me as I was free. I'm not on dialysis anymore, but I would like to advocate for a simple change in dialysis in Ireland.
Below are suggestions to health services executives, health ministers, dialysis centres, the National Kidney Bureau, and the national kidney program, and their directors, on how to solve some of the persistent problems experienced with dialysis. It's very low cost and very simple. It helps save lives and prevent bad errors.
1 Create patient- and practitioner-led national policies for dialysis centres, making it mandatory for all centres to follow the same protocol. This includes policies to treat patients, from what to do during the crisis to universalizing the types of dressings used throughout dialysis centres and therapeutic delivery techniques.
2 Create a scoring system. For example, A is the highest and C is the lowest. We evaluate the center based on care, serious incidents, patient responses, complaints, and more. Dock mark due to poor performance. It is mandatory to place your score on the central entrance door. If A is the best and C is the worst, the patient will see this. Patients deserve to know this. What I'm talking about here is incentives to prevent life-changing mistakes.
3 Importantly, at present, one patient with dialysis has three records. There is a complete physical chart with a complete patient history. There are digital charts that often struggle when someone tries to update it. And most importantly, two white A4 pages with black ink that is printed freshly for each dialysis session and stored near the patient's bed. This final record is what the nurse works for.
However, here is the problem. As the lack of investment in digital records often means that computers don't update, so like it happened to me, there's a paper prescription written on it, but it won't be added to digital records. Two drug lists appear over time. An error occurs. Nurses do not need to read large charts with comorbidities before treating patients. This seems like a big hole in care to me.
4 Handover of the dialysis unit is required. Make it mandatory for nurses to read the latest records on a larger chart of each patient, which is billed once a month.
5 On the aforementioned A4 page, we present a colorful traffic light style sticker system with black ink left at the bedside during each session. I would probably recommend coding red, green, yellow and pink. One color indicates an allergy, the other indicates a line flash that is suitable for the patient, the other clearly lists other diseases, the fourth indicates whether or not it has been implanted previously, and what tactile precautions must be taken. Write the information next to the related colors. Check this with the second or third nurse before treating a person. Often, I run into incorrect or outdated information on my A4 sheet on a certain day and nurses who have not read the wider charts work from this incorrect information.
6 Make sure your new nurse is following the protocol correctly and double-check it. Give them training and back them up when they need support. Normalize the response: “I don't know the answer, but I'll go.” If the nurse makes a serious error, take it seriously, take it off for a week and give it more training.
7 Take long-term patients seriously. They know what they're talking about.
8 Acknowledge when you're wrong and show the steps you need to make to change things.
I was being given the wrong medication several times in a few months at a dialysis centre. It was the same wrong drug every time with the exact same steps of treatment.
And perhaps the two A4 pages assigned to everyone during treatment can be stored in a colorful folder. This can help people to adopt it more seriously (seriously) by keeping important information in a precious way. Each patient is an individual case and not a cookie cutter for all other patients. Using bright coloured coding, nurses should not make excuses for sleepwalking thought care. I apologise to nurses I know who are receiving absolute forensic care for the patient, check everything 3x and choose serious presence and consideration as a preferred mode of communication.
I take good care of you and I thank you.
But we have to deal with people who aren't.
These suggestions for change can be implemented within a few days. The colour-coded system pays attention to detail. In other words, if you are careful and exhausted, in fact, if you are busy enough to not incorporate a perfect case, a color-coded paper will provide you with information so that a clear record doesn't do.
When you are dealing with vulnerable people and they are dependent on you, it is you who are free.
Hopefully someone else will be free.
