Transport to Hospital
A Trip to the hospital
Note to reader
This is an addition to the Kidney / Renal & Transplant & Palliative Blogs.
Just to remove the uncertainty for any new comers, to be aware to watch out for.
-then not all are fooled like me!
Travelling to Hospital.
While one is endebted to the service. Bearing in mind having to visit three times a week for a long time. Over the years transport issues have arisen. Often along the lines of the following.
' Cheaper if patient gets to nearest unit, yes. But doesn't always fit in there. And happiness, preferably without pills is of utmost importance!
' driver complaint 1, heard: "He got him/herself in, and if he can do it once. You wonder why they can't do it all the time." ...Well, I imagine the varying health from day to day, the costs that mount up to unaffordable prices, the added time it can take and being blamed for being late, or a rare one off act of kindness from a rarely visiting friend/relative. I would suggest that people avoid these one offs simply to avoid such stigma.
' - 2. "The worst excuse I've heard for people getting transport is a. petrol costs or b. parking costs." Of a. Surely, it is better for the environment to share!, some-one is getting well paid, &b. Hospitals put up prices of spaces to the point where they can still fill the lot. This may still tend to be staff, and one or first come first served. I remember how I got to resent the extra effort 'just because I'm ill', and in my case getting lost in Leeds due to stress, and poor memory in the first place.
At being lectured and accussed of not thinking of Others. My first semi-serious reaction to today's incident was of making them wait while i eat breakfast, then wash up, the wait for the plates to dry on their own before putting them away! ...then getting my shoes and socks on!!! The truth is I havetoo many people to think about as the walls and floor/sof the flat are very thin, and awhilee ago things went on, to cut the long story short I have ended up with a door intercom buzzer that cuts short when pressed, half the time of every-one elses! This was considered a smaller price to pay than changing shifts. (I was not going to send this, it may've been eleted but 4 july 2010, head sister mentioned it was a problem for transport, so to help me help you itis now imperative that you set, and let me know an earliest time scenario at the very least, so that i can be ready. This could be a set time, with set variance of say 10 mins. either way -much more may be unfair!
Driver arrives 6.55am, sounding abit anxious in asking 'are you ready',
I replied "I've just got to get my shoes on, and sort a couple of things" (namely take a couple of mypills, make sure electrics etc.are switched off, pick up walkman etc.)
It was 7.05am approx. when I was getting into the transport van. He sounded short when he said "can you sit over there -please!", one of them forced "please"-es.
"Right", No matter, I thought. Then came the lecture.
Something about "Try to have more consideration for other people..." To start with I felt maligned at this accussation, he rarely picks me up -thankfully- and clearly hasn't bothered to do his homework so his downright predjudice/s hasn't even got a current basis!
"I just want to say that I have some-one else to pick up after you, and you've made me late.-...You've also made the other patients late, and it can go on in a long line...Try to think of other people"
(I kept quiet ...because had I entered into a conversation with this man while stationary would've made us even later. But In analysis 1. The amount of times that I have been late because of that lot! From drivers not turning up for work and the controller not bothering to check, to people being assigned who don't start early enough in the morning to get me in on time. (It isn't my fault the local unit turned out to be an alcove for thieves and baggabonds, where despite not fitting in they tried to keep me there!), all sorts of mis-organisation over a long period of time.
2. On journey I eventually tried to point out that 10mins was a reasonable time to wait, GP's in my practice expect people to arrive with in 10mins of appointment time. Later than that and it's just cancelled! There used to be some attempt to put others ahead which was fairer consider they say 'appointments cost money'.)
He retorted "If every patient was 10 minutes late, that would work out as the nurses having to work over for 1 hour!" -"And they wouldn't be happy with that now would they."
(In analysis. 3. I am not every patient! Nor should I be held responsible for others.
4. I can not, nor should I be expected to be able to account, prepare or be ready for every given situation that throws itself at me. And furthermore feel that this responsibility lies with the transport company to keep stability for long term patients that have to use the service. I accept that sometimes things have to be changed but do not expect to be moaned when they do!
When in an exasperated attemp to make him shut up, I said of the nurses "Let them work for their money!"
he retorting in a tone with "That's a nice attitude!"
I replied with the same sarcasm, "well it's a nice life!"
he sounded a mixture of cross, half turning his head "I don't know what your talking about!!!"
Having repeated the relevant part of that conversation, he repeated what he'd just said with raised voice. I was too tired, nor should i bother trying to correct his low oppinion of my character. Nor did I point out they might be grateful for the overtime, nor the fact that being ill is probably far worse than any amount of overtime.
Making a minor effort to keep with the tone, I replied, "Well lets not bother (talking) then!"
A good idea (in the first place! - More so) because he really doesn't know what I'm talking about, that is to say what it is like to exist in such circumstances! He looks to have plenty of health, enough to keeping working and presumably moan about those who don't! He doesn't face the monotony of diialysis three times week, the sttruggle to keep active -as well as alive!- during the four hours that it takes! Or see people sometimes being sick, or struggling to breath, or "going off" requiring nurse intervention to prevent death. Or seeing so and so isn't here today, and wondering what's happened (eg. Have they died?, or are they in hospital?, if so-why, is it serious, will we see them again? If they're "lucky" they might have a transplant, if it works, lasts etc., etc. Who can I ask?, And will they be allowed to tell me?) Even with my rule of not getting involved such things can still have an effect, even if only for the sake of wondering whose next?
furthermore having to rely on other people to maintain even this lesser standard of health, ie. avoiding death while I need to is ar less suitable than having it on a natural basis. Even when people aren't nagging, moaning, and/or lecturing etc.
First, I don't think it is actually professional or appriate for drivers to be giving clients/patients lectures. (Posssibly why the cleverer ones talk about 'other' people) It turned out that a patient who is no longer the same time as me, and hasn't travelled with me for quite a long time now, was put with me on this occassion. In future I am more than happy for such things to occur, but would advise staff to turn up as early if possible.
Moreover, it may be known by staff that some time ago now I had to deal with neighbours complaining about my 'getting up so early', the noise the alarm makes. This indicates how thin the walls are. While I have never been able to wake up to radio, even whenn quite loud. Despite this I still set the alarm with the volume at a level that no-one has complained at -yet, though I still seem to get a strange look from the neighbour whom I suspect tampered with the door intercom device and stop it working, which they gave up on -for the time being- after several repair call-outs when the transport operator started ringing (Thank You, I do appreciate this, as it can be necessary.) This point alone proves my unselfish, warm and thoughtful nature/efforts!
Finally regarding 'making others late', I consider that having a range to be ready for is not acceptable, it allows drivers to be less than punctual, and fairs fair! (ie. It works both ways). Also, individual circumstances can infringe on this, even with the best intentions. (for example. NATURE! I know of a case that results in erratic bowel movements. Surely, therefore allowing for delay in any system is surely a sensible thing!
I would say that if given a set time, provided this proves reliable. (that means a phone call is necessary to inform of any delay or even a need to request being early!!) And so long as provision is made for this illness (ie. as above, being sick etc.) I will do everything in my power to be ready, and even waiting in a place where I can see them coming at that time!!
I did not ask the name of the gentleman in question being about 60ish. as far as I can tell, with broad Yorkshire accent. Now I have no wish to take this further, or even make it a formal complaint in the first place. I don't even wish to make good the threat of putting him on 'my exclusion list' at this point, something i said to indicate annoyance at his attitude and assumptions so perhaps he is the one to 'try to think about others'!. If he wants to applogise for his ignorance the next time he transports me, that's fine. Though please don't prompt this as it doesn't matter either way I suppose. I therefore submit this solely for information purposes and trust that you will deal with it in an appropriate and professional manner.
Since nurses discussion re. not being ready, I have fixed the problem of the broken alarm, I will now be getting an alarm call from an old mobile that will only go on for one minute rather than 59. That will help in some circumstances. The broken alarm clock is now thrown out. I may still have to come to agreements with neighbours to negotiate a level that I can hear, that they can't. Also not able to see doctor until early August, so delays on those grounds may still occur until then.
Should patients pay something towards there own transport?
Opinions in Public that aren't asked for
Should people keep their opinions to themselves?
Others unwanted opinions can be so Annoying!
It seems every-one has their own opinion formed from their own particular stand point. It seems drivers commonly hold the following:
1. "It would be good to get you dialysing in ...(place name)" a driver said one morning.
I retorted something like 'No it wouldn't'
This is a study of things I didn't think to say until exploring the incident by writing this piece. Had I thought of it the journey would have been less awkward!
Why does it matter to a driver that I, every-one be dialysed nearer home? Before the treatment started making me infirm by drying me out and weakening me, particularly my legs. I walked in while in my home unit. If every-one could do this he'd have to look for another job.
2. "Most people want to dialyse as near home as possible"
-I'm no different here really, it is just that things didn't work out nearest home. But why don't people ask rather than accuse? I feel, believe this answer would've been more easily found had it come as a question.
And while on the subject of questions never asked. Why does no-one as "did you ever try ... (near/er or in your home town)?
3."Isn't Dialysis just Dialysis?"
The person under employ bellowed from the front of the ambulance. I still have no quick answer but this blog explores some of the many reasons why it isn't just like taking a pill then getting on with the rest of your day.
I had to say "No". But some answers as to Why not? -prove problematic. If I gave too much information here it might get back to the very people whom I would rather forget, and whom I would rather forgot me.
No dialysis is not just turning up and being put on a machine. People have differing personalities and different preferences to how things are done. Again I suppose it is true of any walk of life, and would go so far as saying a way of the world that some like a warm temperature, others cold or not so warm. Some like to look out at scenery others aren't bothered about having windows, and some manage to sleep while others watch TV or read, or play on portable game systems etc. As far as Sport goes some like Rugby and hate football, others are vice-versa or like both or don't care for either.
Some prefer to have things done their way while others are content to allow the other person to decide. This is true of both staff and patients, in my vast experience and observations in the environment.
It's not really a question of where you live more how you live and what works best for you. I would suggest as a guide that it is a good idea to keep with the doctor whose books you are already on from pre-dialysis as you will be more used to their ways of doing things. And they will most likely run a Satellite unit somewhere near to where you live. Although not necessarily the nearest.
All patients start at a main unit. These will last a period of time until the staff are happy that you are stable on dialysis and can go to a "Satalite Unit" situated nearer your home. If the placement isn't the nearest it is still worthwhile trying it before asking to go somewhere nearer, even if the option comes up in the process, the time will no doubt come around again soon enough. And in the meantime you will have gained a sense of whether you have things in common, and if your way of doing things is suitable to the way the unit does them. If this is the case it is probably worth staying. You could always ask for a month or so holiday to the nearer place to test it out -though they might say no if no-one is willing to swap. That's your first clue!
If you're not happy at the place you get to. It is possible that it is some-ones way of trying to say they don't like outsiders. And by outsiders this isn't necessarily location, nor is sport the only possible pass time in this day and age. By talking you will have given clues as to what type of person you are, what you like and don't like and how you are with things generally. This is inevitable. Dialysis often becomes something resembling a 'hive mind' sort of like the Borg in Star Trek to some degree, if you will, with a heirarchy not just from doctor down. For instance my exercising seems to make the older patients stare as if to say "We don't do this here" but I have to stretch due to other issues. Thankfully they tolerate it but it still makes it harder to do somehow. Going against a grain, I suppose.
Difficulties can occur and even sometimes continue to exist in any walk of life. There are many dicey environments where, for instance sound carries, and personal information such as your address, and whether you live alone etc. is given casually and can get around in what amounts to a public environment. Question whether such things are necessary for a form before answering. It's better to answer "I prefer not to say" than regret feeling obliged to answer what may not be important anyway.
As far as being alone goes; some treatments are available in the home but are preferential to some-one being around. It's true that nurses can save a lot of the doctors time with informal chats. But people who live alone should be aware of the raised security threat when spending more time away from home. This of course is necessary when dialysing which is usually three times a week, and time without travelling or waiting etc. is at least four hours but can even be five in certain but rarer cases.
Whenever things are happening worthy of complaint or even prosecution. It is still better to try to refrain from using the complaint proceedure. In the instance that it becomes apparent that 'I don't fit in/ like it here'. Don't assume that you can change a place to your way of doing things! When every-one else has contented themselves with the way things are being done, the preferred way of doing things will have become set and well established. And no-one likes outsiders coming in saying this or that is wrong; certainly not at first anyway.
What happens with a complaint is that it is investigated by talking to persons involved; and often adds to the persons embarrassment especially when the hierarchy considers the person to need correction. If they were to say the staff member is in the right this would embarrass the complainant. Resentments build up either way.
It is a good idea to find out the options while you're at the main unit as to which unit/s your named doctor runs. If you missed this opportunity yiou could contact the main switchboard, ask for the main unit if you don't already have the number and find out which doctor runs which unit/s. It is also useful to have the office number of the doctors secretary for other questions. Perhaps you change your mind about something, this is the fastest, most efficient way to communicate to your doctor.
It was not obvious to me that I could contact a doctors secretary and make it known that I was looking to transfer. The place where I was attending treatment was blocking where I wanted to go by only offering places where they wanted me to go which were overly inconvenient by distant, but also I'd realised I was much happier with my old specialist.
At the time I felt they wanted me to stay there and try to wear me down. I still feel there are elements of this when I hear that some -who don't actually dialyse- seem to propogate that people who can should be sent to the satellite unit nearest their home whether they like it or not. This is depressing as is anything and everything that takes away control from the sufferer because a key to feeling empowered is the ability and as many opportunities as possible to self manage the treatment/s one is getting. Refusal of this core care component shows "power appeals to those who wish to mis-use it" as the little known proverb goes. And so I missed chances to escape "my Alcatraz".
In many ways I have myself to blame for prolonging my time there. I wrote what was going on, so they tied to stop it. But this didn't stop other things happening, and there was a lot in the repertoir, and so by the time things were repeated a certain amount of time had passed so nobody blinked. I don't know what I was trying to achieve but the drawback of writing this way was that even the hierarchy wanted me to stay, presumably as I was the only one giving feedback and as nobody visited I was the only means of contact. I was told that I could not leave and that I should feel grateful because people had done a lot to make things a little easier for me there. Though for every ounce of work toward this goal there was a ton against. So, if you choose to write to any-one at all. Here is the best wording that I realised too late.
state name, address, dob., hospital number, unit dialysed at. etc.
Dear ...(Head of departments title and name)
Thank You for dialysing me at (unit name). Unfortunately, however things aren't quite working out here as we would've hoped. I therefore write to ask respectfully to be placed on the list for a transfer to (name preferred destination, and any alternatives you have in mind. Note that this could be back to the main unit to start the process again. This is a good idea to offer as there will always be somebody ready to transfer to a Satelite unit from there).
I would be very grateful for a fast response in this matter.
Thank You again for this opportunity and your kind consideration.
Yours ...("faithfully" if you've never actually met. Otherwise "sincerely" is the norm.)
AND TYPE/ PRINT
Allow a week or two. Note that showing gratitude indicates that it is not your intention to take things further if you can possibly help it. Compare that to two years of being labelled trouble and having to wrestle with the system! I'm writing this in the hopes that others don't have to learn the hard way. Many things have happened since that didn't happen before I went to my home towns unit. But despite being warned independently by an expert 'complaining gets you nowhere'. I just wasn't privy to the less obvious alternative. -as above.
My own story isn't without tradgedy. I've had to install internet cameras, alarms that dial out etc. Simply because untrustworthy people got hold of where I live, how I live, learned my gentle personality -this is an incentive for cowards protecting themselves from repercussions. I have written much about this in another blog. So the following is just a sort of update.
One day in the midst of all this. I happened to pass an old flame in town. Though she called out for me, I was very aware that I could inadvertently bring her into the trouble that had leaked beyond the walls of dialysis. From what I and investigators gathered, the way the crime syndicate work; they like to find vulnerabilities among friends, they will cause problems to any-one they deem vulnerable, but particularly like adding as much misery etc. as possible to those they have in captivity. And the nature of dialysis is quite captivating!
Anything that would serve to isolate the person is also appealing to any-one with criminal intentions. The patient whom would be ready to calculate that such must be part of the new situation even though strangers are turning up, this being since the move to the unit. Therefore be very likely to be something to do with the placement. And relating this to their loved ones can therefore scare them away. Especially those who deem they don't need to be there anyway. In effect causing much isolation.
Considering that being on dialysis is already very stressfull added to that the fact of the life threatening illness. Not only the strongest relationships but the strongest people survive. I've never been any good at relationships! And my would be love is a precious and delicate flower. So I just walked on by as though I didn't hear.
Later though, another encounter and I overheard my being called a "Div" (aka. "idiot") and so this writing is an attempt to make known that which I could not tell her. (Not least because it has taken several bloggs, and private counselling to figure out). What else could I do? She has a boyfriend now from what I gather, and I hope he can give her everything she needs, where as I cannot.
The 'war' has calm spots but my name seems to be on some sort of syndicate list as skirmishes do still occur from time to time some 4 years since leaving that place. And I can never be sure whenever I meet a stranger that they don't already know more about me than would befit the term "stranger".