There are many potential problems when it comes to the unit. Most of these are naturally avoided once one is home dialyzing by one self. There are problems with lack of hygiene, both personal and overall cleanliness of the ward, intermittent and changing staff with a lack of interest in their patients. I gladly repeat what I wrote last time: It is easy to teach a caring person skills but it is much harder to teach a skilled person to care.
Hygiene is a problem in many units. First there is the hygiene of the actual unit where standards in Denmark have fallen over the last 25-30 years due to increased pressure on the system. The latest – and greatest (at least to the administrators and politicians) – being New Public Management (NPM). It is bordering on tragic to see how my unit is ‘cleaned’. NPM has required many old folks here to get themselves a robot vacuum cleaner and I sometimes wonder if that would do a better job than the human robots running around my ward.
Then there is the problem of personal hygiene. I have experienced dirty finger nails, scabby wounds and lackadaisical and hurried cleanliness, and worst of all non-sterile practice when needed. It is absolutely unacceptable with such an attitude in a place like a dialysis unit.
One thing is showing up in a dirty room, where there have been the same blood stains on the machine for days. It is quite another to show up, get ready to dialyze and then suddenly electricians or plumbers show up to work right above you sit and dialyze (electrician) or right behind your chair (plumber.) In both cases I was able to move to a different room. But one of the first days in my ward I experienced two complete strangers come into my room to remove a dialysis machine, they needed to unplug it from the wall behind me and I along with my machine was moved around, leading to my machine almost being unplugged from the wall. These sorts of things are simply not ok in a professional health care environment.
Lack of privacy is also an issue. I understand how it will not be possible for everyone to have a private room, just like it most likely will not be desirable in the long run for most. But when one has to endure having a scheduled meeting with the doctor things have gotten out of hand. It is ‘normal practice’ at my unit at Herlev Hospital, in Denmark to have scheduled bi-monthly meetings between patient and doctor right there while one is on the machine with up to four other patients in the room.
I complained about this to one of my doctors and got a private meeting with him instead (or in addition to the one with the quack they had sent to the room) and he explained that it was a wish from the patients to have it so. Nobody wanted to come to the hospital more than necessary. Now, the interesting thing is that all the patients I have asked are also puzzled by this arrangement. All of them would rather have a private meeting with their doc.
There is a blatant staffing problem at my unit. I can see how it is difficult to have everybody show up at the same time to start people up. This also creates a problem at the other end where everybody has to end at virtually the same time. This could be solved by asking patients to show up at different times in the morning/afternoon or make some kind of schedule where they weren’t all expecting to start when the nurses show up for work. But my unit has evolved a culture where every patient shows up at the same time and everybody ache for attention which leads to the one with the loudest wail gets attended to first. There was an attempt at getting patients to meet at two different times but it was never followed by patients or followed up by staff, so it naturally failed miserably.
Now, I am not sure what the staff does in the hours between start and stop of patients. I do have an idea that they are not nearly as busy as when everybody needs to be started or finished. So there is a problem with having too little staff during start and stop and too much in between and the answer to that must be some kind of staggered starting time for the patients, so they can be serviced properly when they are there. It is my impression that increased staff will never be the answer due to the constant laying off in the industry.
Every nurse has a different way of doing things. This is a double edged sword. I was told that it was a good thing because I would learn how things could be done in different ways, this is partially true, I have chosen to do things in one way over another. But it also means that they have different approaches to training patients and that is really dangerous. The danger lies in that there is nobody who knows what particular things their patients have really learned. And even if they think they know it the patient might only have had rudimentary instructions in certain aspects because the nurse who taught it was of the opinion that the more advanced aspects could be taught later. I am of the opinion that a lot of important knowledge is never taught because of this haphazard method of instruction.
What are the answers to all of this? I have tried to answer most of the questions at the end of the categories. But there are some systemic answers that are key to a better experience at the unit. The first one being more passionate and better trained staff. I am not sure how to find staff who is passionate for dialysis, but I do know what kind of difference it makes! When you have staff that is not invested and just going through the motions, it means you have a demoralized and non-incented work force. But when you have a motivated staff everyone gets motivated, not least the patients. They will suddenly take a whole new interest in their treatment which I am sure will ease up the work load for the nurses in the end. Unfortunately I have been in a unit that caters to disinterest on all levels. From my observations it all has to do with management. I am not afraid to say that the manager of my present unit is the most disinterested manager you will ever find. When it comes to dealing with people she would score negatively on most scales. She had the audacity to tell one of my fellow patients after having known her for several months “I think I am beginning to like you” …need I say more? How can a person in that position let those words slip past her lips?
I am not even going to go into the bureaucracy at the unit or the hospital. I can just add that none of my complaints have been answered in a proper manner so far. I am not surprised. It takes both integrity and guts to come out and listen to all the things that are wrong and I doubt that anybody there have either.
Ultimately I think that limited care dialysis should be moved away from any hospital units. It doesn’t belong there since it is so much more in line with rehabilitation. We are seriously ill patients who need some serious treatment, but when we are treated properly we live reasonably bearable lives and don’t necessarily feel sick. However, dialysis is seen as a secondary treatment to kidney transplants even though a transplant isn’t always that desirable. There are huge and serious problems with being transplanted for a lot of people, but unfortunately it seems way more exciting for the medical profession, both amongst doctors and medical companies where there is way more money to be made for both parties.