Bladder problems after radiotherapy

Hi Rawsoftba9a24 , I have no experience of catheters but whenever I have any problem relating to PCa treatment I contact my CNS. Do you have any nurse contacts from oncology?

Thanks, David. Please expand CNS, In my post I explained that the community nurses would not help. If that is what CNS is short for then what should I do. You will see my problem.

Hi Rawsoft,

who told you that it was not the responsibility of the Urology department that treated you? That seems very odd indeed.

I think that most people would absolutely agree that they are legally responsible for your ongoing care.

Contacting your consultant oncologists secretary by phone and follow up e mail is a good place to start explaining your predicament and the stress it is causing and ask them to pass on the e mail to the consultant for their early attention.

It is best to have written contacts in case of future query as no ones memory is perfect.

If the flow is blocked upon removal then I doubt if the gp or district nurses would be able to help and their refusal to do this means they think the hospital should do it too. 

I hope you get some help and advice soon as it is very stressful situation you are in.

Albert

Hello Rawsoftba9a24 

That's a sorry state of affairs and is the NHS at it's lowest point.

I have had an indwelling catheter for well over 10 months in the past. Mine was fitted in A&E - passed on to Urology who took responsibility for it and the Community Nurse Team to deal with changes etc.

Now the A&E team made a balls up of fitting the original catheter (details only available after the 9.00pm watershed!!) so I ended up with Urology dealing with the 12 week changes.

From what you have said I think you need to speak to the GP practice manager - they have the discharge notes and arrange for them to speak with the Community Nurse Team to sort out your catheter care. Whilst speaking to the GP you need to ask why you are in pain (is it a UTI or issues passing water?) and why you need the catheter at all (enlarged prostate?)

Sadly this is a case where you need to advocate for yourself - if the GP practice refuse to deal with you ask for confirmation in writing that it's not their responsibility - then we can go forward but having been there myself you are going to have to deal with the GP first due to A&E fitting the catheter and issuing the discharge notes.

Do get back to me if you are struggling - I have more arrows in my quiver.

Best wishes- Brian

Brian, thank you for taking the time to post such a helpful reply. I have been troubled by the circumstances and following a call to 111 (who were very helpful) I spent four hours this afternoon at the nearest A&E

I was dealt with by good staff and ultimately saw a doctor with whom I discussed the various issues. Amongst other things he conducted various tests and identified an infection which is not uncommon with a catheter. He supplied me with the right antibiotics (not just a prescription) which may well make a big difference. He also spoke to the community nurses department and will register me on their books. This includes completing and sending a form on my behalf and I believe supplying some information from records that they should already have received.

I could not have asked for better service in context and feel more optimistic about the future. 

Incidentally, the nurse I spoke to at the Urology Department categorically told me that he would not remove the catheter as he did not fit it. I am not seeking to apportion blame in the matter as all I want is to be fit and well so that I can get on with my life.

Thanks for your support.

Hello Albert. Thanks for your reply to my post.

Please see my recent message to Brian which provides an update and covers most of the points. If things do not work out, I will refer to your post in planning what to do next.

Many thanks, Roger

No problem at all and I am so glad you are sorted. My team gave me 2 bits of advice and I never had  UTI in over 10 months.

* Make sure all the straps are behind the pipe work not over them.

* Where the pipe enters the penis - roll back your foreskin (if you have one) and having boiled some water - let it cool and was that area with the cool water. No soap. There will be debris. Do this daily.

Happy to help if you need anything else.

Kind regards- Brian.

Once again, many thanks. I won't go so far as to say I am sorted but I am further forward than I was. Roger

Hi Roger,

I am glad you got sorted out, that is a result from dialling 111.

The staff dealing with you sound like real professionals and have covered all the bases. If they are at the same hospital as your urologists that will make life easier as the notes will be handy.

I hope that it will be a smooth path with your follow up care so you don't need to be in the same position again.

Albert

Thanks, Albert. I share your hope but I cannot help thinking it should not be such a struggle. Many thanks, Roger