Friday, April 23, 2010

Women! Have you asked your friends yet if you have cancer?

I recently copied the patient ombudsman’s office (Patientnämden) for Västmanland County on a letter of complaint to “Bleak House” (Västerås Centrallasarettet) about lack of access to gynecological services in Västmanland. (I recently had a complicated hysterectomy that I believe would not have been as problematic if I had received appropriate help much earlier.)

On Monday, I got a call from the ombudsman’s office to say they had received their copy of the letter. As we were talking, I mentioned that, in my letter, I had not raised the point that no one ever suggested or did a biopsy of my uterine myoma (reason for the hysterectomy) when it was first detected and that if it had been malignant I’d probably be dead now. (Since I had conflated the symptoms of the myomas – there were several now – with those of menopause, there had been a long delay before the problem was addressed.) I realize malignant myomas are very rare, but if you don’t check, how do you know?

The staff person assured me that women often talk amongst themselves about menopause and that I would have discussed my symptoms with family and friends and that I would have gone for a check-up. (She also said I would have had pain but I’m not sure this is true.)


My friends are supposed to diagnose my cancer?

What next?

A Ouija board? A divining rod?

First, women do not necessarily discuss menopause amongst themselves. For me, it’s a private matter I’ve discussed with very few people, including family. (Are men assumed to discuss prostate problems amongst themselves?) Second, as a foreigner living in another country, the circle of friends with whom I discuss intimate problems is very small. Third, the symptoms for both malignant and non-malignant myomas, as far as I know, may be the same so why would my behavior have been any different?

I answered that I probably would have assumed my symptoms were related to menopause and done nothing. (And there’s no reason to think my friends would have come to a different conclusion.) I may be dumber than most women, but that’s probably what I would have done.

In fact, it’s what I did.

Friday, April 16, 2010

A seamlessly smooth system? Not!

“You are not our problem, and lest you forget, we have ways of reminding you.” This is the clear and ever-present message to patients subject to referral between clinics within the Västmanland health care system (Västmanlands landsting) and the Västmanland County Hospital in Västerås (aka Bleak House).

That will be SEK 50, please
I recently had surgery at the hospital and needed to have my stitches, or in my case, staples, removed. I was told my local health care clinic could do it if I wanted to save myself a trip to the hospital. Why not? I thought.

On the scheduled day at the scheduled time, I went to the clinic and presented the staple removal request form I had received from the hospital. “SEK 50,” said the receptionist. What? I have to pay to have my staples removed?

I’ve always thought the purpose of co-payments is to discourage overuse of service. I hardly consider removal of surgical staples a matter of choice. Indeed, I thought it was part of the entire “surgical package,” whose cost is covered by county health care services.

I later learned if the hospital had removed the staples there would have been no charge.

Perhaps my clinic, since it was not responsible for putting in the staples, thought it had no responsibility to remove them, hence the co-payment. But SEK 50 was most certainly not the real cost of the task, and I’ll wager the clinic gets reimbursed by the hospital or county anyway. (I wonder if the clinic deducted the SEK 50 it had already charged me from its bill to the hospital/county? A little double-dipping never hurt anyone, I guess.)

So why charge me?

I guess it was just my clinic’s way of making me feel welcome, and reminding me not to waste its time on things that are not its responsibility.

We’re so busy!
But the urology clinic at Bleak House was not as subtle. Due to a complication during surgery, a tube had been inserted between my kidney and my bladder. It was to be removed three weeks after surgery. The gynecological surgeon told me I would by notified by mail of appointment time in urology for removal of the tube.

I waited two weeks. Nothing. By chance, I happened to speak with the surgeon who asked if I had received a urology appointment yet. Nope. Two days later, a letter arrived with an appointment for the following week. The date of the letter was the same day I had talked with the surgeon.

I should have suspected trouble when I saw that the appointment time on the letter was hand-written – a printed time of 11:00 am had been scratched out and 10:30 am handwritten next to it.

I arrived at 10:30 and signed in. After 45 minutes, I tracked someone down and said I had been waiting 45 minutes. She confirmed that I had a 10:30 appointment (duh!) and said there would be a wait. After another half hour – it was now 11:45 – someone heard me complaining on my cell phone to a friend and debating the pros and cons of leaving.

Two nurses approached me. They told me they were overbooked. (At least the airlines offer monetary compensation!) I insisted on knowing how long it would be before they could help me. They wouldn’t commit. Finally someone said “5 minutes.” I was skeptical, but about five minutes later one of the nurses fetched me. It was 12.00.

Suddenly she was all professional, but I wasn’t buying. She offered no apology so I asked for one. She muttered something, after which I let loose about how "patients are people and not hunks of meat!" I explained the staff should have let me know there was a delay, told me what was happening, and apologized for the wait. So then gave a more sincere apology and I said, “That’s all I wanted.” (I still would have been angry, but less so.)

She said there was a delay because they were fully booked with their own patients, but had been asked to take patients from other units too (i.e. me). The implication was that I had been squeezed in, but not by choice. (How long had they had the referral?)

They removed the tube. I was in and out in 20 minutes.

Apparently my local clinic considered it a burden to remove my staples and felt it necessary to “nickel and dime” me as a result. And apparently gynecology and urology disagreed as to whose responsibility it was to remove the tube.

These are internal fights that I as a patient should know nothing about. Yet here I am writing about them because they have directly affected me.

A seamlessly smooth system? Not.

Thursday, April 15, 2010

Hospital hygiene – it's in the details

It started with a chair.

But unlike the movie Juno, that’s where the gynecological similarities between this and that story end.

I had been admitted to Centrallasarettet (Västerås County Hospital) for a hysterectomy. A small armchair stood in the corner of the room. It was not an unattractive chair and it added a little warmth to the room. The evening before my operation I sat on it and noticed the back was broken. This is a little dangerous, I thought. If someone leans back too far they could get hurt; now I know why the chair is propped in the corner.

A day or two after the operation, my husband came to visit. He pulled the chair forward and it flopped back. Look out, I called, the chair is broken. Another time, a nurse came into the room and the chair was looking floppy. She nonchalantly propped it back into the corner. No one took it upon themselves to have it removed before someone got hurt.

(When you're stuck in a hospital bed for a week, there’s not much to do except observe - like the picture of a sweet child on the wall of a room in a ward for women facing reproductive issues such as difficult pregnancies, miscarriages, hysterectomies, and gynecological cancer. Bad choice.)

Due to challenging surgery and a complication, there were two drains and a catheter protruding from me the first couple days. Each time a nurse came into the room to check me, she’d (all my nurses were female) pick up the drains, which had fallen on the floor, saying “These shouldn’t be on the floor.” Inevitably, since hospital beds are narrow and, at first, I wasn’t even aware I had drains in me, they’d fall on the floor again and another nurse would come in and say “These shouldn’t be on the floor.” (I couldn't pick them up myself.) One nurse did pause and look to see if there was a way to fasten the drains to the bed but nothing came of it.

Soon the drains were removed, but I still had the catheter. As I began to get up and move around, I noticed dried spots of urine on the floor, where the drains had lain, and where nurses emptied the catheter. The spots were sticky-looking and dirty because each day a custodian came in and dry-mopped the floor, thereby smearing the semi-dry urine.

I felt ready for a shower. I went into the bathroom, which was shared by four patients, two per room, and their visitors. I noticed a sign above the toilet and large bottles of anti-bacterial disinfectant next to the sink. The sign said that patients, for their own safety, should clean the toilet, I assume the seat, before using. I took a quick look in the bowl. Not disgusting, but not the cleanest toilet I had ever seen. (After abdominal surgery, patients’ bodily functions are not quite what they should be.) It stayed like that for days.

As my own body recovered and I started using the toilet. At least once I slopped excess disinfectant on the sink and the floor as I was wiping the seat. I thought about the effect of this on the worldwide overuse of anti-bacterial agents, but never mind.

One afternoon there was a problem with my catheter. As I lay in bed and the staff attended me, they put used tubing and instruments on my bedside table. When they were done, they took everything away, but no one wiped down the table, which was also used for food and medication. When they had left, I got up and did a little cleaning. Thank goodness for that disinfectant in the bathroom!

At meal time, staff would bang on a pot lid - like farmers summoning pigs to the trough or, more kindly, troop leaders rounding up kids at scout camp - to let patients know the food cart had arrived. There was also a coffee cart in the corridor where patients could get a light snack and something to drink during the day. When I was able to walk, I got up for coffee. The floor in front of the cart was splattered with coffee and juice.

One day as I sat in the patient lounge, I smelled something - it was the custodian’s mop as she casually made her way down the corridor.

I’m sure the chair is still there.