Whatever happened to "informed consent"?

[robert@fm]

Last Thursday at my dialysis clinic, I was told (without any advance hint whateve that this might happen) that my dialysis slot (which up to then had been midday) had been moved to early morning as from the next session (Saturday), and I was to be ready to be collected at 5am{😱}! 🙄 I asked when I turned up on Saturday whether this was a one-off, and was told that it was a permanent change; so I tried to tell them that there were at least three reasons why this change is not viable, and they cut me off before I had said more than a few words. 😡

Hence on Sunday I sent them this email (which I think they received on Monday when they opened again):

I have without notice been moved from my previous midday slot to an early morning slot. As I tried to tell one of the doctors on Saturday (but was not allowed to finish), this slot is totally non-viable for me for several reasons:

* I am on a care plan. There is no way my carers can possibly get to me, and do all my morning tasks, before the 6am collection time currently set.
* I am also a night person; it is simply not feasible for me to wake up much before 7:30am on a regular basis.
* I am currently taking the day's basal insulin doses at 8am and 8pm, and am thinking of moving those times to 9am/9pm because of the sleep problem above (8:30am is a much more plausible waking time for me). Having different times for dialysis days and for non-dialysis days is probably not a sensible idea.

I think the only realsitic option is to suspend my dialysis sessions until a midday slot once again becomes available. Kindly let me know when I can come in again.

Their only response was to ring me (twice) to repeat that I was in an early morning slot! 🙄 So, since it has only been by coincidence that I have actually been awake on the two occasions since when they called for me, and I certainly wasn't ready (in fact, this morning I was in the middle of doing something), I refused to answer the doorbell or the phone.

I hope this gets sorted out soon; I consent to being on dialysis, but I don't consent to being in anything other than a midday slot (point 1 above means that an afternoon or evening slot would also be unsuitable, as I have to be home before 6pm).

 

[robert@fm]

Curiouser and curiouser. 🙄

Although I had someone (presumably transport) ring me at 06:40, 06:42 and 06:49 this morning (having rung my doorbell a few minutes before the first call), about 11:30 I got someone from Patient Transport arrive (unannounced) at my door (unfortunately there was no way I could be ready at such short notice); then at 12:15 I got another call, this time from Dialysis, asking why I hadn't gone with the second pickup! 🙄 I was just about to email them (I didn't answer the call, I got it on my voicemail) when I got another call from them, and this time answered it. I finally got to explain to them (what they should have known from Sunday's email; did they even bother to read it?) that because of my care plan (and the other reasons which I didn't reiterate) that the only dialysis slot suitable for me is the midday slot, so I've been told to expect a session tomorrow (Friday). Result!

I must remember to ask if (1) this means that I have been permanently moved back to the right slot for my needs (if not, it's back to square one), (2) whether my next session is Saturday or Monday, and (3) if I have been switched from Tuesday-Thursday-Saturday to Monday-Wednesday-Friday (which might be slightly better for me, but if not, I can live with it).

 

[Caroline]

According to hospitals (been there with different things myself) no one has a social life outside appointments and admissions.

 

[Mark Parrott]

I volunteer for hospital transport but won't do the early morning dialysis. Sod getting up that early. Its a bit off that they are forcing you to go early.

 

[Amigo]

It's just as well you're in good health Robert or all this would be intolerable! 🙄

I've come to the conclusion that you have to be built for ill-health and up like a lark at the crack of dawn for hospital appointments that you wouldn't need if you were able to race round the place without assistance at 5am!

You stand your ground! 😡

 

[mikeyB]

I get similar problems with outpatient appointments in Glasgow. The usual one is the 9.15 appointment in winter when the first ferry off the island leaves at 9.00. It doesn't matter that outlying patients have to travel a distance, it doesn't seem to occur to those making the appointments that it's not quite the same as coming from Cumbernauld. And it's been like this for decades. Very slow learners indeed.

Mind you, I once had an appointment changed to 1.30 only to travel and be told 'Nobody is here till 2'....

 

[Pumper_Sue]

I had a call last month late in the afternoon to tell me an urgent MRI appointment slot had been made available for me the following day at 9 AM. I politely (for me) suggested that the caller looked at her map and then worked out what time I would have to leave the house 🙄 Did also point out the consultant damned well knew I couldn't attend for at least a month due to my dog having surgery.

 

[Mini-Vicki]

At my last doctor's appointment, he advised me to make a phone appointment when I had a blood test for a follow up.
When I attempted to make the phone appointment with the receptionist she said that she could make a note that the doctor should call me. But it would be 'anytime between 8am - 7pm'. When I mentioned that wasn't convenient and my job means I cannot keep my mobile with me, and I needed a time slot, at least narrowed to a couple of hours, she just looked at me blankly and said well if I missed the doctors call, I'd have to make another 'appointment'.
I don't think these people realise we have lives beyond medical appointments!

 

[trophywench]

Well we have to arrange our holidays around hospital appointments, and some clinics don't write and tell you when it is, until about a fortnight before. As it is - Pete's having his January appointment on 19th April, cos they were 'slightly delayed ' .....