Now that I am free of kidney dialysis, I want others to be free too

Now that I am free, I’ve been thinking about American novelist Toni Morrison and the powerful words she told O – Oprah Magazine – in 2003. “I tell my students, when you get these jobs that you have been so brilliantly trained for, just remember that your real job is that, if you are free, you need to free somebody else. If you have some power, then your job is to empower somebody else. This is not just a grab-bag candy game.”
In the spirit of these words, I am writing not what I expected to write today – what I want to talk to you about – but that which feels most urgent and relative.
When the call came, I was reconciling the fact that, despite three previous incidents, at least three emails to management and several in-person conversations, I had been administered the wrong drug several times in a couple of months at my dialysis centre. It was the same incorrect drug every time at the very same step in treatment. The repetition filled me with the kind of hopelessness that diminishes agency and reconciles you to this curious space. You are standing in a room with those in power and, although you are screaming to be heard, the words smash up against what turns out to be a soundproof wall.
[ Woman in late stage kidney failure makes plea for suitable accommodation to receive dialysis at homeOpens in new window ]
Worse still, words such as “anxiety” are thrown back at you. You must raise consciousness so often, that the words begin to boomerang backwards, wounding you and strangling each other into silence in the process.
There is no room for anything else.
This was not a place I had ever been before, but this treatment, the exhaustion and the medical errors repeated – as though I had never spoken – were hard to comprehend. It seemed like, at this point in my attempts to survive, I had become Radamès in the final scene of Verdi’s Aida but no one was waiting for me.
Now, because of the life-saving act of another human being, I am free.
Why write about this gruelling experience after being saved? Because, like Toni Morrison said, this is not a grab-candy game. I am thinking about freedom – the little amount that can be given to someone on dialysis – and because I am free, I want others to be too. No one should be caught in a kind of samsara that is just accepted as functionality in parts of the Irish health service.
Everyone deserves better.
[ ‘It’s great to be able to do kidney dialysis in my sleep . . . I can live my life with this’Opens in new window ]
In 2023, according to the National Renal Office, there were 2,191 people on in-centre haemodialysis and 294 on home dialysis, which meant 2,485 in total on dialysis. Each one of these people deserve the security and safety of care that is impeccably safe, monitored and clear. I’m sure in some places they are getting it, but I know this is not the experience everywhere. One thing that solidified my need to write this is the, mostly impeccable, care I received at my transplant centre.
It can be done, and done well, and done with dignity and done in Ireland.
Now that I am free, my time has been returned to me. I no longer undergo dialysis, but I would like to advocate for simple changes in dialysis in Ireland.
Below are suggestions to the Health Service Executive, the Minister for Health, the dialysis centres, the National Renal Office and the national renal programme, and its directors, on how to solve some of the persistent issues experienced in dialysis. It’s extremely low-cost and inordinately simple. It will save lives and help prevent egregious errors.
[ Orla Tinsley: The safest dialysis experience I have had at this hospital… I just had to get Covid to have itOpens in new window ]
1 Create a patient- and practitioner-led national policy for dialysis centres and make it mandatory for all centres to follow the same protocols. This includes policy for treating patients, from what to do in a crisis to universalising the types of dressings and treatment-delivery techniques used across dialysis centres.
2 Create a scoring system. For example: A is the highest and C is the lowest. Assess centres based on care, critical incidents, patient response, complaints made and more. Dock marks for bad performance. Make it mandatory to put the score on the entry door to the centre. If A is best and C is worst, patients will see this. Patients deserve to know this. What I’m talking about here is incentive to prevent life-altering mistakes.
3 Crucially, as it stands, there are three records for any one patient on dialysis. There is a full physical chart with the patient’s full medical history, there is a digital chart which is often a struggle when someone attempts to update it. And, most importantly, the two white A4 pages with black ink that are printed fresh for each dialysis session and kept by the patient’s bed. This final record is what nurses work from.
However, here are the issues – due to lack of investment in digital records, the computer will often not update and so, as has happened to me, a paper prescription is written but never added to the digital record. Two medication lists emerge over time. Errors are made. Nurses are not required to read the larger chart with co-morbidities before treating the patient. This, to me, seems like a gaping hole in care.
4 Make handover in dialysis units mandatory. Make it mandatory for nurses to read the up-to-date records in the larger chart of each patient they are charged with once a month.
5 Introduce a colourful traffic-light-style sticker system on the aforementioned A4 pages with the black ink that are stapled together and left by the bedside at each session. I suggest red, green, yellow and pink coding perhaps. One colour indicates allergies, another illustrates the line flush appropriate for the patient, another lists clearly their other illnesses and the fourth indicates whether they have previously had a transplant and what kind, and what touch precautions must be taken. Write the information beside the relevant colour. Review this with a second or even third nurse before you treat the person. So often, I have encountered the wrong or old information on my A4 sheet on any given day and the nurse – who has not read the wider chart – is working from this wrong information.
6 Check and double check that new nurses are following protocol correctly. Give them the training and back them up when they need support. Normalise the response: “I don’t know the answer, but I’ll go and find out.” If a nurse makes a serious error, take it seriously, take them off that work for a week and provide more training.
[ Homecare providers informed that HSE will not fund extra hours for existing clientsOpens in new window ]
7 Take your long-term patients seriously. They know what they’re talking about.
8 Admit when you are wrong and show what steps you are taking to change things.
And maybe the two A4 pages assigned to everyone on treatment could be kept in a colourful folder. This, a holding of the important information in a cherished way, may help people take it more seriously (seriously). Each patient is an individual case and not a cookie cutter of every other patient. With bright-colour coding, a nurse should not have any excuse to sleepwalk thought caregiving. My apologies to the nurses who I know take absolute forensic care of their patients, those who triple-check everything and choose serious presence and consideration as their preferred communication mode.
I value you and I thank you.
But we must deal with those who don’t.
These suggestions for change could be implemented in a matter of days. The colour-coded system forces attention to detail. In other words, if you’re too mind-numblingly exhausted to care or, indeed, you are so busy you don’t take in the full case, the colour-coded paper – as clear records are wont to do – will give you the information.
When you are treating someone who is vulnerable, and they are dependent on you, it is you who is free.
It is your job to do everything in your power to smooth the way so that, hopefully, someone else gets free.