After seven miserable wet months of continence pads I have a new suprapubic catheter. In October last year I and several carers/nurses/doctors couldn’t get a fresh catheter in at a change and the tract closed. Colchester General were unwilling to admit me (the Urologist said he wasn’t trained to do suprapubics and I should go to outpatients) and I was sent home in a puddle of urine with no pads or pointers on how to get them prescribed. The only thing they were willing to do was put a uretheral catheter in, despite the fact they’ve never worked for me which was the reason for the suprapubic in the first place.
Time passed, operations were cancelled due to lack of beds but now I’m getting on well with my new suprapubic, enjoying all the benefits I had before:
- Drinking as much as I want to
- Preventing, being aware of and dealing with urinary tract infections
- Having intact skin and staying clean
- Being able to go out wherever and for as long as I want
- Managing my bladder with minimal help from PAs
- Being able to enjoy sex
I’m getting the drawbacks too, most of which relate to fear of things going wrong again and the problems caused by clinicians not communicating with me or each other:
- Will I get blockages again?
- Will I have a catheter calcified and stuck inside me, lots of different people yanking on it and causing more pain before accepting it needs surgery and refusing to tell me what was wrong with my blood test?
- Will a nurse try to put a catheter in the wrong place, only stop when I push her away and put the now unsterile catheter into my bladder?
Currently it doesn’t even look like I’ll be getting any help at the first catheter change. I asked the surgeon if I would be referred to the district nurses for the first change and he said he wasn’t sure because, not being a patient, he didn’t know how it worked. I asked the nurses at the hospital and they said I should phone the district nurses. The district nurses won’t put me on their list without say-so from the GP. The GP won’t refer me because the hospital wrote “no formal follow-up” in the discharge letter. They and I are leaving messages with the surgeon’s secretary and nobody is getting back to us. It’s the GP I’m most frustrated with in all of this. They know the date the catheter was put in; everybody knows catheters can’t stay in for ever; can they not therefore take some initiative and refer me to the district nurses for the change? Nobody wants to take responsibility for anything.
Fortunately I have the mobile number of one of the continence team managers. I’m pretty sure she’ll get something sorted as she’s one of the rare individuals willing to take decisive action. I just feel sorry for anyone new to catheterisation trying to deal with all this nonsense.
Still I’d go for a suprapubic catheter over any other solution available to me any day. The pros far outweigh the cons.
Fifty minus Eight 