"Communication and accountability issues"

I was an inpatient at QEUH for around 3 weeks.  During that time I spent time in Urology 11c, Renal ward 4 & then the High Dependency Unit.  Since discharge there have been some really concerning and frustrating errors and what appears to be a complete disconnect between services i.e. GP, Hospital & Community. Thought best to list the issues in order:

1. There has been zero pro-activity in terms of contact from any of the services.  My wife has had to chase up the hospital re: a nephrostogram that was supposed to be done 2-3 weeks after discharge.  She had to contact the ward 4 weeks after discharge, to be told by a ward clerk I had fallen through the cracks.  I was then next day taken in for the procedure.  

2. I needed my catheter changed 12 weeks from discharge.  My wife contacted the district nurse and she was told the hospital (11c Urology signed off the discharge letter) had not completed a referral for catheter change and would only be able to change nephrostomy bags.  My wife again has had to make persistent contact with ward 11c to organise a referral, that should have been added to plans on discharge. We were advised this had also fallen through the cracks.

3. Finally, and most alarming, when the referral for catheter change was completed, the district nurse attended my home.  She asked us if we had a flip flo to attach to the catheter. We were not aware of such a thing.  She then advised us that we should have had a supply and this should have been changed weekly to mitigate any infection.  No order was ever put in for this, nor were we previously over a 12-week period advised of this requirement. I've been at real risk of infection for 3 months without my knowledge.  Something else that has fallen through the cracks.   

At the moment I am in the middle of a 12 week wait with nephrostomy tubes in my back and a catheter, with no real clarity on a treatment plan.  I don't know what is going to happen to me further into the year. I feel like there is a lack of linkage between services and the stress my wife is under continually having to chase for things that have been forgotten in error is really upsetting for both of us.  

No doctor has ever sat with my wife & I to give us a prognosis, timeline or clear diagnosis or potential outcome of this whole period of ill health.  I have never used NHS services in the past 30 years, and I have to say I am really disappointed in my experience.  I feel scared for my future health as my life has been turned completely up-side-down.  

Any support or information would be really welcomed.