“You want me to come back again tomorrow?” I said through gritted teeth. My cheeks were twitching with pain and I asked, “Are you admitting me?”
“No, but you must come back tomorrow to see the neurology team, and we will start you on steroids.”
I shook with rage. It had become too much. The adrenaline surged through my body, and I erupted.
“I cannot f**king believe you are asking me to come back tomorrow. The way you and the whole hospital treated me today has been horrible.”
Grabbing my crutches, I struggled to stand, and with an ability I wish I always had, I left. The fight-or-flight hormones giving me mobility I didn’t have ten minutes earlier. The red rage and crushing pain soared, and I left the hospital, eventually getting to my car, to begin the hour and half drive to get home.
My faith in the health system – crushed.
Three weeks before, I had attended the AMU (Acute Medical Unit) to see if they could put me on a week’s course of IV Steroids. My ability to walk had dramatically slowed and my fatigue had grown to where I spent most of the day on the couch, often sleeping in the afternoon. This has happened before, as I have shared on this blog, and steroids give me an incredible boost.
I thought this would be a simple process.
On this visit, I could not find any disabled parking spaces close to the entrance to the hospital, so I used the general car park. It took over thirty minutes to get a space. It was now noon, and I didn’t have a specific time to attend. The delay didn’t cause any problems, or so I thought.
Because it was raining, I could not use my mobility scooter. They are electric and rain, which is a common occurrence in Ireland, can damage this vital mobility aid and it takes a lot of energy and time to assemble. So used my crutches to get to the AMU. In making that trip, I realised I could not have used the scooter, as there are no ramps to get on to the footpath from this car park.
After going through the entire registration system, a triage nurse assessed me, who was very good. Extremely thorough, and took many notes. I explained my fatigue, and mobility issues and some neurological tests were done. I also explained I have been short of breath and get dizzy when I stand. This nurse then checked my blood pressure when sitting down, and standing, noting a drop when I stand. He told me that the doctor would do more tests later.
The doctor saw me at about 2pm and again took another history, did some neurological tests, and said I would have to wait until the neurology unit decided what to do.
Finally, at 4:30, the doctor arrived back to me and said the neurology team want me to have an MRI, with and without contrast, to see if I have some active multiple sclerosis lesions. I asked why this was even relevant, as I have secondary progressive MS and there are few Disease Modifying Therapies available for me, and I am not sure I would accept any of them, because of the other illnesses I have. Particularly, my chronic pain.
The doctor said I would have to go home and wait for a call about an MRI appointment, as it was not possible to do it that day. He seemed to say they would do the scan and then admit me for IV steroids. At least there was a plan, but he did not know when I could have the scan.
This was a long, tough day for me, with my pain increasing steadily over the day, and I had to rest for the following few days to recover from all the activity. I just don’t have the energy to manage the long drive to and from the hospital and all the noise, light, and movement associated with being in a healthcare environment.
On Tuesday, my second visit
Two weeks later, I got a call from the doctor letting me know they booked my MRI. Initially, they wanted me in at 7:30 am and I told them this time was not possible for me. My illness doesn’t allow this. The cost to me physically would be unbearable. Eventually, they confirmed an appointment at noon, on May 24, a week later.
After my previous experience, I knew I had to be at the hospital by 11:15 am to make sure I had a parking space, could go to the toilet, and register in the AMU again. I had to use the crutches to get to the reception desk, and now this was even more difficult than three weeks earlier, as my decline continued.
The receptionist said I would have to go to MRI 2, which was just around the corner from the AMU. It wasn’t. Several long corridors later, I got to the MRI and wished I had asked for a wheelchair. The receptionist saw I had crutches, and should have warned me of the distance to the MRI unit. It seems it is just too much to ask of someone working in a hospital, where sick people gather.
The sweat was dripping off me from the exertion. When I arrived, I quickly sat down and registered with this department. More questions, and then I found out they would not use a contrasting agent for the MRI.
I was very surprised and got them to check. They phoned the neurologist, who said I didn’t need a scan with contrast, and I wondered why I was getting an MRI. Whatever the images showed, my treatment would remain the same: IV steroids. As I was there, I went along with it. It finished, and I went back to the AMU, and the technician kindly offered to bring me back in a wheelchair. The one, of two, kind acts all day.
Now I had to wait for another assessment from a different doctor. While I was waiting, I asked a nurse for some food and water, and a stool to rest my leg. This was the last time I was treated with respect and empathy by an employee of the hospital for the rest of the day.
The doctor arrived and asked me to go into an examination room with two other patients and their families. I struggled to get up, trying to manage crutches and a jacket, as the doctor looked on. Another patient rushed to help me, giving me a little extra support. The doctor didn’t even offer to hold my jacket. Looking on coldly.
Slowly, I made my way into the room. I have difficulty hearing people when there is over one voice or sound. To understand what is being said, I need to concentrate very hard, and it makes this more difficult when people wear masks. I know I would have difficulty. The doctor didn’t even comment on this. Perhaps she thought I was just another difficult patient.
The first comment the doctor said was she had not read the notes, and asked me to explain what was wrong. Again, I explained my symptoms, and even showed how my walking and steadiness had declined since my last steroid treatment. My phone tracks so much, and I thought it might help. This data was dismissed. I mentioned fatigue, mobility, dizziness and pain, none of which was commented on. This doctor had no interest in me and the impact of this disease and chronic pain on my life.
She asked for a urine sample, because I had mentioned about my bladder issues. She left then and said we would have top wait for the results of the MRI. I got the urine sample, and a nurse saw it, and brought it away to test it. She returned after a while to say I was dehydrated and needed to drink. I said I was not drinking, because I have issues with my bladder and having access to a toilet in a hospital is often difficult, or far away. (The disabled toilets in the hospital are not up to standard, with the emergency cord tied up, and bins which are foot pedal operated).
The doctor didn’t come back to talk about my dizziness, dehydration or pain, and they moved me out of this room, as they needed it for other patients. I had to go back out into the corridor to wait. All this activity, lights and sound, pushed my headache to a pain level of 7, on a 10 point scale. It was getting bad.
My pain was getting worse
I needed to get my pain medication in the car and asked if someone could bring me in a wheelchair. This is when one of the most absurd things happened. The person I asked had a wheelchair in their hand, and they told me I had to walk, with my crutches, down a long corridor, to a waiting area, where a porter would come. She walked me to this area, pushing an empty wheelchair all the way. I was tired, in pain, and focused on getting my medication, and didn’t realise the absurdity of the situation. No empathy at all.
Again, I waited for a porter, who brought me to the entrance of the hospital, but no further. I would have to make the journey to the car myself, with no help. This shocked me. Eventually, I got to the car, took my medicine, and headed back to the hospital entrance to wait for the porter to bring me back to AMU.
When I arrived back, I was again sitting in a corridor, with no stool for my leg, and the pain was rising. I saw the doctor, sitting at a desk, using her phone to message people. I saw all the doctors walking around, looking at their phones, sending messages, or taking personal calls. At 4 pm I asked the doctor what was happening, and I was told they had the results of the scan and now I had to wait for the neurology team to come. I asked how long would this take, and the doctor told me I would be seen by 5pm, as this is when they finished.
I saw two neurologists arrive, one with a reflex hammer in hand, at about 4:45. It seemed they would see me soon. Meanwhile, one of the catering staff arrived and offered tea and a sandwich. I asked for a sandwich and some water. To which they replied ok and I could get the water myself, halfway down a long corridor. I asked if they could do it, and was told that she only gave us tea, not water. Shocked, I grabbed my crutches to show her I couldn’t do this myself, and she angrily went to get me water. How inconsiderate of me.
The neurologists were walking from room to room, and I wondered would I be next as the time had now reached 5:15. It was then the doctor came to me and told me I would have to come back the following day to see the neurology team.
This has to be the worst experience I’ve ever had in a hospital.
Sometimes I experienced isolated incidences which should not happen, but these two days have highlighted some glaring issues in the healthcare system.
We, the patients, are not human. We are like rocks which need to be moved through the system, however crudely. For the doctor, I was just a stepping stone on the way to a consultancy career. Less than human. The staff had no empathy for me. I am sick, and I was attending the hospital because I need help, help to get better, not worse.
The consultant neurologist did not think about my fatigue, my mobility problem, or the rising pain associated with an extremely challenging day for me. They felt it was much easier for them to get to come back the following day, a day I spent in bed, and on the couch, doing nothing, as I battled to control the residual pain from the previous day. It would have been impossible for me to return.
My conclusion was that I was not safe in this place. It was better for me to be at home, gradually getting worse, that to be exposed to healthcare people (they certainly are not professionals) who have no care for me, and the impact they make on my life and illnesses.
It has now been four days since this happened and I have now recovered from this day. I lost three days of my life, because of the events in that hospital. Days I will never get back. The system is faulty, and I realized this reaches throughout the hospital: doctors, porters, catering staff, cleaning staff, all showed to me how little they thought of me, and other patients I saw that day.
The nurses were excellent. What are they taught, which the rest of the staff should learn? The education of doctors needs to be embedded with empathy and communication training. It isn’t a one day module, but a way of behaving. Healthcare is a vocation.
What is your experience with the healthcare system? What would you like to include in the education of future doctors? Let me know in the comments.