Follow up after radical cystoprostatectomy

Hi Sarah,This is awful and not right at all.I don’t understand why they cannot send an ambulance surely not being able to eat or walk is reason enough.I had weekly phone calls from the recovery nurse for the first few weeks but nothing after that.I do think the follow care leaves a lot to be desired.My care was passed back to the local hospital.I get the occasional phone call and scans.I contacted social services and they arranged care for mum which although I was loathe to do was invaluable as I really couldn’t have looked after her.What about PALS ? This really is not good enough.I hope the paramedic can help,Love Jane xxx

I had a follow up appointment with the surgeon 6 weeks after the cystectomy.

Paramedic came far earlier than we were told, and said there was nothing drastically wrong with him-is he blind? Social care have done an emergency referral today for my mil to get respite care, but have said they both need help. Previously, social work assessors said there was no help available. What an absolute mess this is. Nothing joined up between services and zero help. The hospital said to take him to A&E. It’s 1.5 hours away and we cannot even get him out to the car, far less have him sat in A&E for hours. He is skin and bone now and gravely ill. this is an incredibly difficult time and he thinks himself he won’t make it. Just a disgrace. 

Our experience of PALS is unfortunately not positive but I suspect we will go down that road. Thank you Jane-seems follow up care in general is not as good as it could be, but this is now an acute situation.

Sarah xx

Hi Sarah,I think you should call an ambulance anyway.They can at least come out.I never rung one for mum unless absolutely necessary but each time bar one she was taken into hospital and admitted.At least in hospital your fil can be drip fed.

I had one paramedic who was not very helpful as he was about to finish his shift.I said I was not happy and he reluctantly sent for another crew.When they arrived they were disgusted he had left.They took one look at mum and said pack a bag for her and rushed her straight as she was vomiting blood.

We are waiting till 2pm-the paramedic said he was reporting back to the gp surgery so allowing time for that, then I think it’s got to be 999. He needs rehydrating and his bowel issues investigated. The way he is now, this cannot wait beyond today.

I’ve been admitted by ambulance twice myself and had the most lovely paramedics who were so kind. I’m sorry you had an unhelpful one. One crew was just about to go off shift when my call came in but they were here within 10 minutes. On each occasion it’s been a necessary admission-a pulmonary embolism and a life threatening bacterial infection when my bile duct blocked. I was very grateful they were so thorough and got me straight to hospital. 

I hope we can get something organised this afternoon. He needs to be in an ambulance not our car-that’s impossible.

Sarah xx

Absolutely Sarah and he needs specialist help.It’s upsetting to think of your father in law being in this situation.It is disgraceful of the hospital not to answer messages but as you say nothing is joined up and the communication is usually dire.How worried you all must be.We have always had lovely kind paramedics except for two.They do a difficult job and I can’t praise them highly enough as they always looked after us so well.I’m keeping everything crossed that your fil can get some help.I had a lot of fecal leaking post op but obviously if it’s very severe it will need investigating.xxxx

Hi Jane

Still no help as yet. GP surgery promised to call back, but didn’t. Social care chap hasn’t yet called back either. I hate to think how ill you need to be to get help nowadays. Fil has slept this afternoon and says he feels a little better but who knows if that’s really true. He doesn’t like a fuss. 

We’ll wait to see what the morning brings now. We clearly cannot access any support today. Very stressful all round. Thank you for always being so supportive.

Sarah xx

Oh Sarah,It’s unbelievable that no one has got back to you.Mum never liked to make a fuss either but sometimes I had to step in and insist we got some medical help.It’s not that long since your fil had his op and really as it’s major surgery you would think the medics would take his health seriously.Infections can often cause people to be unsteady or unable to walk.Usually paramedics will take someone in if they cannot walk,this happened with mum on several occasions.Let us know how it goes.I would call an ambulance if things get worse before tomorrow.I hope you can get some help tomorrow if not sooner.Thinking of you all.Love Jane xxxx

Hello Sarah, just want to back what Jane says. I know FiL doesn't like drama and nor do you. But I suspect you won't be sleeping much tonight. The thing is, if you call 999 in the middle of the night, I have a sneaking suspicion [with a little experience] you actually tend to get better attention, sooner, than during the day or evening.

Sending supportive virtual hugs, 

Denby