I will try and be brief and not drip feed!
My DC was born with a rare condition that is only surgically corrected in two hospitals in the country. They had surgery when younger and one further surgery four weeks ago. They came home with two pieces of equipment which have malfunctioned on a near daily basis. The first week after coming home we had to present at our local hospital ( which does not deal with any aspect of his condition) 3 times and the hospital he attends twice.
Since the 23rd Jan, the management of the equipment has been left to me, despite continued malfunctioning and pieces of necessary care that I’m advised not to do. This finally led to an 8 and a half hour trip to A and E at our local hospital for dressing changes on blistered skin, an ultrasound and care of the equipment to ease the malfunctioning.
The hospital has not informed our GP of the surgery and I have had to complain to the practise manager to override practise policy and obtain sterile supplies and dressings as the hospital said to use hot water and alcohol gel to sterilise equipment going into the surgical site as I had no new ones. I had to do that for 5 days until our GP surgery could get some. ( that’s a saga on it’s own, wrong equipment ordered etc)
I have placed calls to the ward my DC was on asking for the on call registrars to call me back ( I was told by them to do this so they could advise me directly). They haven’t returned my calls to advise me and that’s why we had to present to our local hospital where thankfully one of the surgical team had experience of his condition and was able to help.
I have contacted PAL’s and was assured I would hear from someone senior with regards to this yesterday. Still nothing. I also spoke to the head nurse explaining the malfunctioning before the A and E trip and this was brushed aside.
When attending on 23rd January, they were rushing and ended up feeling that pinning DC to the bed while I tried to calm them was the best way to do what was necessary despite DC having a LD and needing time to process.
We’re meant to be attending for 4 days next week for the last bits of his care after his operation and to teach me how to use the equipment, which I’ve been using without this training for two weeks. I just have lost a lot of faith in their care.
WIBU to ask them to transfer DC to the care of the other hospital?