Orla Tinsley: For some of us trapped in the Irish health system, it’s a constant battle to stay alive

I stood in the cool breeze of the morning watching the wind whip rustic leaves into a frenzy. That’s when the call came.

“Your taxi will be late,” said the automated voice. The morning was delicate, as mornings can be for someone dealing with multiple chronic illnesses.

I rang my lung-transplant team to see if they could tell the lung-testing department I’d be late. The burden became mine — and, in turn, had a domino effect on every single department and person I was meant to encounter that day

I had real-life work to get to but, before that, my second full-time job: an ultrasound, a lung test and then dialysis. It was ambitious of me to think things might go as they should, but the sun was also shining, which made me feel stupidly hopeful.

I had not intended on writing about this again, and I don’t plan on revisiting it, but, on that day, this taxi issue became my responsibility to handle. I phoned the company, which said it was trying its best to get a car. I phoned the ultrasound department to say I would be late, but the voicemail recording said no one answered the phone until 10am, and there was no way to leave a message.

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I emailed the dialysis floor to make sure they knew what was happening and frantically tried to book a cab on the empty apps. I rang my lung-transplant team to update them, too, to see if they could tell the lung-testing department.

This is the domino effect of a taxi service not capable of handling the job of transporting patients.

The burden became mine — and, in turn, had a domino effect on every single department and person I was meant to encounter that day. The taxi arrived 50 minutes late.

A couple of months ago my diabetes team wrote to see if I had found care elsewhere as I had missed an appointment. I was an inpatient at another hospital at the time. There was no communication between the two hospital teams

It reminded me of something my old youth-theatre director used to say: “We are only as good as our weakest link.”

He was talking about an ensemble cast of The Importance of Being Earnest, where I played a status-obsessed socialite with Mommy issues. The functionality of each character’s dysfunction depended on our unified precision.

In the same way the corps de ballet affects the performance of a text and its interpretation by an audience, an on-time taxi is the backbone of health-service functionality. When they fail to appear, the narrative falls apart.

And it matters because, one day we will all be patients. That day my dialysis time was cut by 40 minutes because the taxi had been late. This affected my health for the rest of the week.

If I do not arrive for an appointment my chart will say I was a no-show or, worse, a noncompliant patient. This happened a couple of months ago, when my diabetes team wrote to see if I had found care elsewhere as I had missed an appointment. I was an inpatient at another hospital at the time. There was no communication between the two hospital teams.

I am constantly reminded of what my doctor at New York Presbyterian used to say when I presented with my conditioned Irish response of anxiety: ‘Don’t worry, Ms Tinsley, we’ve got that,’ he’d say

The lack of communication happened again this summer. I recently met with a consultant for whom I left four messages after I went into renal failure, and who I was told would phone me back. But he never did. I wondered why I felt so needy about it. How could they completely ignore my care needs over three months? After ringing to say I was in renal failure, and asking to speak to the consultant, a nurse phoned back to ask why exactly I wanted the consultant to phone me.

He said he never received any of my messages which I got email responses to from his office.

Again, something is absent.

I am trying to rebuild and manage structures that I am not responsible for in real time in order to stay alive within the health system here. While I was an inpatient for six weeks, a hospital endocrine team said they could not see me because they were not responsible for me. They prescribed insulin in my chart without discussion with me or regular examination. I asked for them numerous times and was left to guess and research what was new for my body regarding diabetes care despite being in the high-dependency unit. Luckily I am good at that. The corps fell apart but I stayed together.

What is happening to people who cannot do this?

The Irish health system demands an unhealthy permanent fight stance from its patients. Flight is not an option. But I am constantly reminded of what my doctor at New York Presbyterian used to say when I presented with my conditioned Irish response of anxiety: “Don’t worry, Ms Tinsley, we’ve got that,” he’d say.

The words were so simple but the power lay in the truth of them: the follow up was real, concrete, patient centered and, where possible, there was closure. Things got resolved. Speaking of flight, I wish I was back there and I would give anything to get there.

[ Orla Tinsley: It was important to live, even though I was dying ]

I live in the moment and I try to hold joy as often as I can. I remind my students of its power and I practice cultivating it. I don’t believe despair is an option, no matter what might tempt me to internalise it. I work on something Mingyur Rinpoche talks about: Being as in love with the world as possible. I really believe this is the most powerful form of resistance.

One unresolved complexity that affects everything is the ableist attitude of seeing sick people or disabled people as being in need of charity instead of rights. We must start building at the forefront of our change missions the idea of rights as the main purpose.

Instead of feeling grateful for a taxpayer paid taxi service to dialysis and shutting up, as someone suggested to me this week, I choose to believe that patients’ basic rights to feel safe and to have access to healthcare in a timely fashion are more important. We have the right to speak, always. That is love too.

The HSE needs to stop its dependency on patients solving its issues and step up to the plate

The taxi arrived on time to bring me home from dialysis this Saturday. I was the last person to leave the unit. I had spent the morning in the park with friends, so I was very in love with the world. My driver and I fell into step with an older gentleman whose pace was slower, more deliberate. I was told he had been waiting for a taxi to bring him home from dialysis for an hour. It was hard to fathom and sad to see.

The driver and I looked at each other and silently agreed.

I waited by the hostel entrance while he drove the gentleman home first before returning for me. It was 9pm on a Saturday. That’s being in love with the world, but luckily I was well enough to do that.

The HSE needs to stop its dependency on patients solving its issues and step up. You need to learn some boundaries, girl, and fast. Afterwards, the driver told me that it was the nurses’ responsibility to get the taxi. I argued that it was the taxi company’s responsibility to show up.

Maybe it’s the HSE that could make this right, and fast, to protect patients of the present and the future.

[ Read: I am left wondering who has the duty of care to patients like me ]