This blog was going to be about a thing called DHEA. That will come later.
This is more important because I am really annoyed, and need to get it out there. There are lots of others, not only in New Zealand, but all over the world, that suffer this problem.
It’s when you fall through the cracks.
We had it described to us that Derek is one of those people.
It’s like an apple sorting system. The tree grows an apple, that apple is picked. The really bad apples get taken out and put in the pigswill. The rest are then put through different tests/checks. As the apples go through the system, the low grade ones are gradually discarded or put aside for fruiting, juicing, discarding, until all you have left is export grade apples.
Every now and again an export grade apple gets thrown out with the bad ones. It falls through the sorting system and ends up in the pigswill instead of on the shop shelf.
Liken Derek to that apple. He goes through the first check point, and falls off the belt with the pigswill apples, but hey, they get re-checked just in case, so that’s ok. Someone will discover he is actually a good apple, and put him back on the right track.
He has AGAIN fallen through the system. And I am getting quite mad about it. I should not have to spend my life advocating for him, and fighting the Medical Fraternity to get things done. It’s not that they don’t want to do things, they just keep stuffing up.
2.5 years ago, he experienced a Medical Misadventure and suffered multiple organ failure. They didn’t notice (even though it was pointed out to them) that he suffered a brain injury at the time.
After 23 days in hospital (the first 5 fighting for his life) he was discharged from Wellington Hospital (CCDHB) and handed back to Hutt Valley Hospital (HVDHB). He then spent the next 12 weeks at home.
He was referred to a Rheumatologist for his Antiphospholipid Syndrome (APS), and consequent Catastrophic APS. He was referred to Endocrinology for his now trashed adrenal glands.
He SHOULD have also been referred to Occupational/Physiotherapy, for rehabilitation given that he suffered lung damage, transient heart damage and was laid up for 15 weeks trying to get some form of health back.
He wasn’t. He was examined by the Rheumy who said “keep taking warfarin, you look great, see you in a year”. He was seen by his Endo who said “decrease your HC to what the book says, oh, maybe you could also take fludro as well, see you in a year”.
We went back to both of these a year later. Same thing.
In the mean time, I am becoming more and more concerned about other things that are happening to Derek. Each visit to a medical “professional” I mention that he has difficulty swallowing. Each visit we are told, yes, we need to look at that. We will talk to/refer you to XYZ…
After changing General Practitioners in August 2014, we finally got a referral. On 18 Dec 2014 Derek went for a gastroscopy (read about that elsewhere, it’s a story all by itself). At the end of that visit we discussed with the Endoscopy Registrar the fact that the problem is at the top of his throat, between his mouth and his shoulder line. The Gastroscopy looks lower down.
The Registrar agreed that the Gastroscopy was not going to find the issue, and he needed to be referred to another department. Hang on. Haven’t I heard this somewhere before, MULTIPLE times? The question we were then asked, “did we want the her to do the referral, or our GP?”.
We definitely wanted the Registrar to do it, so we knew it would go to the right department in a good timeframe.
On 2nd Februaray we received a letter about an X-ray appointment. Yay, finally somebody that actually did as they promised, and sent the referral. Now they could do the correct X-ray to see why he couldn’t swallow properly.
This was a repeat X-ray 6 months post his last bout of Pneumonia. When we checked in for that x-ray, I asked about the other one. NO, not in the system, never referred, not happening. Best course of action is to go back to the Endoscopy Dept and ask them what happened.
While sitting in the waiting room for Derek to have his X-ray he received a txt message which I read. Hello. It’s a reminder for an appointment for Monday at Rheumatology. That’s great, but what is the apt for, and why are we receiving a reminder. We have never received a letter telling us about the apt. Oh, did I mention that today is Friday?
After the Xray, we trudge up to Level 6, and ask about the reminder, but no original letter telling us about the apt. “Oh, we send them out about a week out from the apt in case it has to be changed”. That’s fine but again, Today is FRIDAY ,and the appointment is for MONDAY. The snail mail has been delivered today, and there is no letter telling us of the apt.
After this discussion, we trudge down to the ground floor again, and along the corridor to Endoscopy. We are told that the notes say that our GP is to do the referral. “Actually, No. We clearly agreed that the Registrar would do it, so we knew it would happen”. The Receptionist asks us to wait while she goes out the back and tries to sort it.
The Manager of the Dept comes out, she has the referral in her hand, which has been sent to the right dept? We told her that it hadn’t been sent anywhere. There was no record of it on the system.
She asks us to wait while she goes to X-ray herself to sort it. She then comes back and promises she will sort it. We try to explain our frustration at the inability of the system to get it right with Derek EVER.
We leave the hospital with a promise from the Manger of that department, that she will get back to us today regarding the referral.
We have now had a phone call back to say that it has been put on to another department, she is waiting for it to be “triaged” which means some obscure little officious clerk, at some desk somewhere, will put it in the system as “non urgent”, which means they have 4 months to act on it.
While I was sitting in the Endoscopy department waiting for the Manager, I was listening to the booking clerk making a booking. There is no denying that when they get a referral there is a timeframe for which they must make a booking. They DELIBERATELY book you on the last possible date to fit the timeframe. I you are classed as semi urgent and must be seen in 3-4 weeks, they put you on the last day of week 4, even if there are spaces available on the first day of week 3! I actually heard her doing this.
We are due to have another phone call from HVDHB to confirm his booking on Monday. We have been promised (and I have the phone call recorded), that once the decision is made as to urgency, the Manager of Endoscopy will get back to the relevant department and tell them that they need to hurry up and make it urgent.
I then jokingly asked if they had a system in place to make sure that the booking didn’t clash with any other booking Derek might have (he gets lots). I was gobsmacked (absolutely shocked) to find that NO, there is no system in place for that! They have to manually check! And we all know how many of the booking clerks would waste their time doing that!
So where does that leave us? In the hurry up and wait chair again.
We currently have a Formal Complaint being investigated by the Health and Disability Commissioner about his treatment at CCDHB. Once we have seen the report on that, I will be putting in a complaint about the HVDHB and their treatment of Derek.
Sometimes all the stars align and you sail through life with ease. Other times, all the mud pits align, and you end up sitting in pigswill for years until someone throws you a lifeline.
We are still waiting for our lifeline!