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Orla Tinsley: The health system is not meeting its patients’ needs

I bought a commode that the HSE should have provided. I paid for the hand railing the HSE should have provided

The overall message to the people of Ireland is – the problem is the patient having needs in a system they should know better than to need from

Orla Tinsley's face
Orla Tinsley
Tue Dec 12 2023 - 06:01

Instead of easing the burden for patients, tasks within the Irish health system are often placed upon the shoulders of the sick. For my part, I was going home as a wheelchair user for a short while after receiving care for a misdiagnosed broken tibia. I had read about the difficulties disability justice activists had been writing about for years and this helped prepare me for what was next. The voices of Louise Bruton, Maryam Madani and Suzy Byrne illuminated my mind, their activism more relevant than ever to my own body and my understanding of our world.

What would my experience be like? Already privileged I knew it was temporary, but despite being in a hospital and under an orthopaedic team, my main task was getting my hands on a wheelchair.

You would think this would be simple, but somehow the level of dysfunction within the HSE and the commitment to miscommunication showed up in full health.

I was well enough to leave the hospital and I was delighted. Days earlier, it had been determined I could use something called a knee scooter to get around small distances like from my bed to the kitchen. This was sometimes, but not always, available through the HSE. It was the first instance during this homecoming I had to dig into my funds to provide care. Luckily, I connected with Martin at Mobility Direct who was remarkable. The next morning a scooter arrived at the hospital.

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Just as I was getting the hang of it I was told I needed a wheelchair for longer distances and they weren’t sure they would have one on time for discharge the next day.

I rang the hospital ward I had come from, who said: “We can’t do anything because it’s the weekend!”

This was a problem. I needed to be transported to dialysis. I dug into my pocket again and ordered a wheelchair. It arrived the next morning and then the OT arrived. They had secured one and all we needed to do was pick it up. I was so used to the HSE leaving me high and dry, I expected the same again. I decided once we had the HSE chair I would ask Mobility Direct if they would consider taking back their chair and giving a refund. At this point I had spent almost €300 on mobility, not to mention the energy expended on micromanaging things outside my responsibility. Apart from the chair, there were several other vital components I needed going home – rails for my bathroom, a commode until I was strong enough to get to the bathroom and homecare. This was all temporary while I could not put weight through my foot and then things would return to normal.

My family visited the HSE place to pick up the wheelchair and commode the day I got home. I was sitting on the couch with my cat when they called – they haven’t got anything in your name.

I rang the hospital ward I had come from, who said: “We can’t do anything because it’s the weekend!”

I rang the Emergency DOC on call and the triage receptionist refused to let me through. “Only people with Covid can speak to the doctor over the phone”, he said. I explained I couldn’t currently walk or be in crowds because of my immunosuppression. He would not budge and his lack of compassion felt cruel and unnecessary. The reality was – no one was willing to help or figure out what had gone wrong and it was no one’s problem but mine.

I bought a commode that the HSE should have provided. I paid for the hand railing the HSE should have provided. When a public health worker visited, it was over one week later and she spent less than a few minutes in my presence but long enough to tell me, “you shouldn’t have let yourself be discharged at the weekend”. What a helpful comment.

I, patient, was to blame for my needs and my discharge time for some reason. I, patient, should bear the burden of the broken infrastructure of the HSE and I, patient, should limit my needs by being easy and malleable at just the right time and not challenging or complicated at the wrong time.

The overall message to the people of Ireland is – the problem is the patient having needs in a system they should know better than to need from.

On certain days of the week, we will tolerate it. But, mostly, it’s appointment roulette for everything from getting into a clinic to accessing a CT, an MRI, a DEXA, a blood test slot, a dialysis taxi that arrives on time or an appropriate wheelchair.

Don’t expect it all, that would be unreasonable.

But it wouldn’t. It would be the bare minimum.

We deserve so much better than what we are getting and so do those administering care.

The deficit in the health budget this year is a stark reminder of the inability of those in Government to comprehend the urgent and emerging needs of a population whose health service is not just on its knees but half buried in the soil, clawing its way from the grave as those in power shovel more soil on to suffocate it. How do you keep morale between workers and patients if no clear desire to support growth and change is made? How does anyone stay above soil?

When the brand new HSE wheelchair arrived almost a week later it had a missing foot plate on the side of the injured foot. They sent someone to fix it and this inspired me to look up the particulars of the chair.

“Please note this product is not suitable for occupant car transportation,” the website said.

They had sent me a chair not fit for purpose and I had discovered this by accident. The main purpose of the chair was to get me to healthcare while recovering. Luckily, I used the chair I rented – but that is the definition of having privilege and support. What happens to those who cannot do this? And what would have happened to me if I had not stayed painfully aware throughout the ordeal?

When I tried to get a HSE chair that facilitated my needs, nothing happened. No one phoned back and the wheelchair company said they had no power to provide the correct chair. It’s months later now and I am deeply grateful to no longer need any of the items I had to purchase during the HSE’s “out of hours”. Family, friends and privilege got me through this hellish ordeal but it was not without cost, on so many levels.

I am grateful for life, but I have still to hear from a single representative explaining what happened. From diagnosis to recovery, the HSE was always 12 steps behind and it never caught up despite the hard work of many people along the way and the work of its patient. Now with even further lack of investment, I dread to think where we will all be in one year.

Hopefully toasting one another, in gratitude above soil.

This is part three of a column by Orla Tinsley.

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