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abandoned after leaving hospital?

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User
Posted 15 May 2014 at 18:35
Has anyone else had any contact from health professionals after catheter removal?

We have just been told, do pf exercises and see consultant in june.No other input.No info on possible progress.

Thanks to a member on here, we feel much happier.

Is this national?

User
Posted 15 May 2014 at 19:31
Not unusual, but not good none the less.

IME (In My Experience) the hospital care is outstanding, but the post operative care once discharged is dismal. Pathetic. Disgraceful. Non-existent.

Is it as bleak as you have posted? Is that it?

Dave

User
Posted 15 May 2014 at 23:03

I was treated in exactly the same way after my RP.

One thing I've found out is that you have got to be persistent to get good service and not get

messed around even if it takes numerous phone calls, e-mails or whatever.

In this instance I think it is standard procedure

 

Kind regards

 

Ray

 

User
Posted 15 May 2014 at 23:46

I was phoned by the ward 2 days after discharge following LRP to see if I was OK. My catheter & clips were removed at 8 days and I was given the histology result at this time.

I have to have ultra sensitive PSA test at 6 weeks and follow up appointment at 8 weeks.

No other follow up was arranged, although I was incontinent following catheter removal (I am now 5 weeks post op) but I self referred to the local NHS Continence Service. They have given advice over the phone but the appointments with them are like gold dust and mine is not until the end of this month.

 

User
Posted 16 May 2014 at 01:40
Hi Hilary, neither John or my dad had any kind of calls or visits from anyone but really, as long as there are no problems such as developing infection there wouldn't be a need to see medics, would there? John just wanted to rest and doze and read - all his energies were going into repair and I don't think he would have appreciated having to trail off to any appointments. But then he had open surgery which takes more recovering from I guess.

Lyn

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 May 2014 at 16:23

It's amazing just how helpful a simple thing like a follow up phone call can help. We have so much catheter and related equipment, including womens' items,  we are thinking of opening a shop !

 

Fiona.

User
Posted 05 Jun 2015 at 21:01

In California we had a little follow-up.  Visiting nurses came by for a few days after discharge from the hospital, but it was a different nurse each time.  They spent much of a short visit doing paperwork.  There was no emotional support.

After my husband had recovered from prostate cancer, he had a hip replacement.  We were required to make an advance trip to the hospital to learn about the operation and aftercare.  Remembering the stress from the whole cancer experience, I broke down crying and told the charge nurse that I couldn't do it all over again.  She completely ignored me.  

I am a lawyer, no wimp, but I cracked under the long-term pressure of caregiving.  It is an exhausting and lonely road.  We received support from friends and neighbors, and that was great!  I guess we have to find caring wherever we can.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif 

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User
Posted 15 May 2014 at 19:24
Sounds about right once clips & catheter gone. Just time needed to heal up & recover. Assuming no other problems arise. Seeing consultant in June isn't very long anyway.
User
Posted 15 May 2014 at 19:29
Sounds pretty routine to me.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 May 2014 at 19:31
Not unusual, but not good none the less.

IME (In My Experience) the hospital care is outstanding, but the post operative care once discharged is dismal. Pathetic. Disgraceful. Non-existent.

Is it as bleak as you have posted? Is that it?

Dave

User
Posted 15 May 2014 at 19:41
It was like that for me, but I was given numbers to ring if I had concerns, and I had a follow up call from Urology nurse about 3/4 days after the catheter was removed. (Christie's, Manchester). I did ring up a couple of times and was given good advice, although I did have to wait for a call back once, but I did feel I had not been forgotten.
Stay Calm And Carry On.
User
Posted 15 May 2014 at 20:50
HM,

do you need advice, help or opinion on any specific area post TWOC?

dave

User
Posted 15 May 2014 at 23:03

I was treated in exactly the same way after my RP.

One thing I've found out is that you have got to be persistent to get good service and not get

messed around even if it takes numerous phone calls, e-mails or whatever.

In this instance I think it is standard procedure

 

Kind regards

 

Ray

 

User
Posted 15 May 2014 at 23:46

I was phoned by the ward 2 days after discharge following LRP to see if I was OK. My catheter & clips were removed at 8 days and I was given the histology result at this time.

I have to have ultra sensitive PSA test at 6 weeks and follow up appointment at 8 weeks.

No other follow up was arranged, although I was incontinent following catheter removal (I am now 5 weeks post op) but I self referred to the local NHS Continence Service. They have given advice over the phone but the appointments with them are like gold dust and mine is not until the end of this month.

 

User
Posted 16 May 2014 at 01:22
That was reasonable care.

Obviously we had the ward number, but they are only into immediate care.

No call from a specialist nurse.

User
Posted 16 May 2014 at 01:40
Hi Hilary, neither John or my dad had any kind of calls or visits from anyone but really, as long as there are no problems such as developing infection there wouldn't be a need to see medics, would there? John just wanted to rest and doze and read - all his energies were going into repair and I don't think he would have appreciated having to trail off to any appointments. But then he had open surgery which takes more recovering from I guess.

Lyn

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 May 2014 at 07:52
We didn't want a visit, just a phone call to check progress would have been good.

We had no idea if Sean was doing too much/not enough etc.

6 weeks is a long time if we were doing things wrong!!

Some sort of pamphlet would have been a help.

User
Posted 16 May 2014 at 08:16
I was given a ProstataeCancerUK Surgery Support pack and Moving On literature, which were very useful. I use the duffel bag to carry spare pads, and other neccessities whenever I go out.

http://prostatecanceruk.org/information/our-publications/publications

Stay Calm And Carry On.
User
Posted 16 May 2014 at 13:25
I remember receiving a call from one of the specialist nurses about 3/4 days after the op,and again after the TWOC.
User
Posted 16 May 2014 at 13:55
Yes that sort if thing would have helped, but we have had nothing at all.

I will tell the consultant how the staff abandon their post op pts.

Glad it isn't national.I can probably make a change at this hospital.

User
Posted 16 May 2014 at 14:00

We had nothing last year after Neil was discharged with catheter in situ and had to resort to phoning medical secretaries to get a doctor to advise if Neil's symptoms were normal. We had nothing about how long catheter would be in for either. This January when Neil went into retention, a call to our GP led to referral to District Nurse service. First question she asked was why was Neil not referred to them when he left hospital last year ? When he came out of hospital a few days ago, he was told to leave the dressing on the supra pubic catheter incision  for eight weeks. Even the district nurses receptionist didn't agree with this  so out came two nurses, checked the wound, re-dressed it and they will phone urology to ask if Neil has dissolving stitches and what will happen at the eight week appointment. They have been wonderful but all this should have been co-ordinated by our local uro service. Continence service have been good, but I only found out about them as a neighbour has a continence nurse.

 So, Hilary, I totally empathise with you, we have felt constantly abandoned. I always refer to it as a do it your self service. I am sure others have had a better time of it. Bad enough dealing with the illness without all the chasing up. Just hope our experiences are not the rule !

 

Regards, Fiona.

User
Posted 16 May 2014 at 14:13
Oh Zarrisa, how terrible!!

You seem to have been far worse than us.

Have you complained to the consultant?It really is not acceptable.

User
Posted 16 May 2014 at 18:11
Yes I have found that being persistent works, but it gets me so wound up!
User
Posted 20 May 2014 at 10:22

S was called twice by the urology nurse team in the immediate days after the op to see how he was doing. When we left hospital I felt a bit surprised that it seemed very blase - just being given a bag of dressings, catheter bags and painkillers and heading off to the car less than 24 hours after coming around from GA. However those calls we received were a big reassurance that we hadn't been abandoned. This site and knowing the nurses are available here gave me a sense of reassurance too. 

User
Posted 20 May 2014 at 16:23

It's amazing just how helpful a simple thing like a follow up phone call can help. We have so much catheter and related equipment, including womens' items,  we are thinking of opening a shop !

 

Fiona.

User
Posted 05 Jun 2015 at 21:01

In California we had a little follow-up.  Visiting nurses came by for a few days after discharge from the hospital, but it was a different nurse each time.  They spent much of a short visit doing paperwork.  There was no emotional support.

After my husband had recovered from prostate cancer, he had a hip replacement.  We were required to make an advance trip to the hospital to learn about the operation and aftercare.  Remembering the stress from the whole cancer experience, I broke down crying and told the charge nurse that I couldn't do it all over again.  She completely ignored me.  

I am a lawyer, no wimp, but I cracked under the long-term pressure of caregiving.  It is an exhausting and lonely road.  We received support from friends and neighbors, and that was great!  I guess we have to find caring wherever we can.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-cool.gif 

 
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