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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To expect better after care than this from the nhs ...

42 replies

OriginalBore · 02/04/2023 15:18

My father underwent two urethral cancer surgeries in Bristol two years ago, resulting in a bypassing catheter and spasmodic bladder each time. The second surgery involved a skin graft that failed due to urine exposure, and the hospital provided no aftercare. The consultant lied about the graft's success in a report to the GP. My father declined a third surgery at Bristol due to his negative experience. Recently, his cancer returned, and he was referred to Southampton and operated on at UCL London. He was discharged with a bypassing catheter and spasmodic bladder again, and had to travel with urine-soaked trousers. He removed the catheter himself, leading to a nurse scolding him instead of addressing the problem. Now, my father refuses to return for further treatment and would rather let the cancer take its course

OP posts:
Original poster
OriginalBore · 02/04/2023 20:09

We live in the south west, his surgery was right in the middle of central London. I'm the only person he has. No other friend or family to call on. There is no hospital transport. He got a taxi to paddington station then the train to our nearest train station where me and my kids collected him from. There is no way I could have collected him from the middle of London. The surgeon knew he was soaking urine through his dressing and making his way home alone and happily discharged him. No anti spasmodic meds. Nothing.

OP posts:
Original poster
OriginalBore · 02/04/2023 20:12

bringmelaughter · 02/04/2023 19:12

I read so many posts on here where an issue seems to be that people aren’t aware of who or how to contact people to access healthcare.

You may have tried these methods on behalf of your dad but it isn’t in your post and I’m posting them as others may not be aware.

  1. Discharge letter may have a contact number on for example for open access to a ward for a limited time post discharge or a nurse specialist team number.
  2. If you have a named consultant, by calling switchboard for the hospital (you can Google the number) and asking for the consultant’s secretary. They will often direct problems to a suitable healthcare professional if your issue isn’t really a consultant issue.
  3. If the care is cancer related then Macmillan have a support line and can support you with problems with accessing care. Other conditions often have support lines as well, for example asthma and lung uk for lung conditions.
  4. Your GP (I know it can take some time with some GPs. As a healthcare professional I often have to leave the phone ringing on speakerphone while I do something else. It’s annoying but often better than not accessing care at all).
  5. Some GPs may also have access via an email or website. Worth checking.
  6. Calling 111. They can book appointments for urgent care centres or out of hours GPs if needed.
  7. PALS. If you feel there’s an issue with not being able to get a response to a problem you’re having they will be able to escalate this problem and help to work through who is the right person to resolve your problem.
  8. ED/A&E. Yes this is for emergencies but, if you’ve tried the other options and have an issue that may cause you to do something that could cause damage like self removing a catheter, this is the better option.

Things can go wrong in the NHS, especially in the current environment people are expected to work within but often using the systems to contact people or escalate problems are very effective.

Tha k you for this. At bristol all we had was the number for the ward and the hospital switchboard. Couldnt get through to anyone. Left messages etc, not returned. Dad never went back to the hospital.

OP posts:
foodtoorder · 02/04/2023 20:31

@OriginalBore as a nurse in the south west who has just spent the last 10hours on shift triaging and coordinating community nursing care I can totally reassure you there will be nurses in your area who are able to deal with this.

They probably have their own direct contact in your area but can also be reached by 111 on a Sunday.

When treatment is provided outside of the locality continuity is so difficult but it does sound like the urology team who arranged the surgery should have done some more asking of the logistics of how he was getting home etc.
the discharging hospital could have provided some pads to be able to get home with some dignity and a level of comfort more than he had.

Sadly catheters don't always function well but your local district nurse team or ambulatory care unit should be able to offer some support for your dad.

olympicsrock · 02/04/2023 20:47

bringmelaughter · 02/04/2023 19:12

I read so many posts on here where an issue seems to be that people aren’t aware of who or how to contact people to access healthcare.

You may have tried these methods on behalf of your dad but it isn’t in your post and I’m posting them as others may not be aware.

  1. Discharge letter may have a contact number on for example for open access to a ward for a limited time post discharge or a nurse specialist team number.
  2. If you have a named consultant, by calling switchboard for the hospital (you can Google the number) and asking for the consultant’s secretary. They will often direct problems to a suitable healthcare professional if your issue isn’t really a consultant issue.
  3. If the care is cancer related then Macmillan have a support line and can support you with problems with accessing care. Other conditions often have support lines as well, for example asthma and lung uk for lung conditions.
  4. Your GP (I know it can take some time with some GPs. As a healthcare professional I often have to leave the phone ringing on speakerphone while I do something else. It’s annoying but often better than not accessing care at all).
  5. Some GPs may also have access via an email or website. Worth checking.
  6. Calling 111. They can book appointments for urgent care centres or out of hours GPs if needed.
  7. PALS. If you feel there’s an issue with not being able to get a response to a problem you’re having they will be able to escalate this problem and help to work through who is the right person to resolve your problem.
  8. ED/A&E. Yes this is for emergencies but, if you’ve tried the other options and have an issue that may cause you to do something that could cause damage like self removing a catheter, this is the better option.

Things can go wrong in the NHS, especially in the current environment people are expected to work within but often using the systems to contact people or escalate problems are very effective.

This is a very helpful post. What I do agree with is that patients should have good aftercare and access to advice.

In my team , we give every patient being discharged a telephone number to call for a nurse specialist Monday to Friday 8-6. Patients also call the ward, our secretaries , other healthcare professionals contact the team via the on call registar on call. There are So many ways to get in touch with surgical teams.

I do think that patients who choose to access care in tertiary centres need to work out their logistics though and ideally stay locally in the immediate post op period so that if there are issues they can be seen. I’m surprised that the pre operative assessment process didn’t spot that he had no adequate support in place for after the surgery.

lljkk · 02/04/2023 21:29

I don't know how to reconcile this story with recurring news stories about large numbers of people who cannot be discharged from hospital because of lack of care packages. If a patient was told they must leave, could they go park themselves in A&E waiting room saying "well, I don't think I'm ready yet" ?

OriginalUsername2 · 02/04/2023 21:34

OriginalBore · 02/04/2023 16:11

He is 75 and has decided it is better to let the cancer take its course than have an operation again.

To be clear, he finds it incredibly traumatic to be discharged home with a constantly irritated bladder and urine soaked bandages, repeatedly being ignored by hospital staff.

For him it is preferable to die without fighting the cancer, than to receive treatment like this from the hospitals.

I'm sure this is not a surprise to anyone these days so I'm sure IABU.

This isn’t a surprise to me. The NHS is basically gaffer-taped together. I’m pretty sure all the NHS staff have compassion fatigue if not full on depression.

Im really sorry.

Original poster
OriginalBore · 03/04/2023 00:09

Choosing to access care in tertiary centres ? He didnt choose - he was told that he was having his operation in the centre of London and that was that.

Re pre op assessment. He had to drive 2 hours to Southampton to have a pre op assessment incl blood tests 3 days before his op.

Then when he got to UCL for the op he had to have a repeat assessment and blood tests because apparently they cannot transfer results between hospitals.

No one ever asked him how he would manage to get home from central London to rural south west with a sliced open penis and a catheter most likely bypassing.

They also presumed he would be fine to travel back to Southampton 3 days later to have the catheter removed. No attempt to get a community nurse to do it.

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L3ThirtySeven · 03/04/2023 00:14

What an utter nightmare! I’d be working with MacMillian to send a formal complaint to my MP over this. Can you afford for him to go to a private hospital locally for the second surgery to close up his wound and address the testicle issue? He sounds like he has PTSD from the hospital in London. I don’t blame him at all for refusing to go back.

Sceptre86 · 03/04/2023 01:25

No this level of catris not acceptable and you both need to complain to PALS. He should leave appointments with hos dignity intact not wanting to let the cancer run its course. That is deeply upsetting and I feel for him.You also need to look at your dads living arrangements because he needs to be supported before, after and during these hospital stays and ypu can't do it from such a distance. I appreciate you have 3 little kids as do I but was there really no-one you could have left them with to be able to pick your dad up from hospital? No partner, friends? I think you need to chat to him about his long term care and how best to support him.

MavisMcMinty · 03/04/2023 01:51

There must be a urology cancer nurse at the Trust? It is an essential post in all site-specific cancer services, most large Trusts will have several of them. If your Dad has no contact details, just phone the hospital switchboard to be put through to them.

Zebedee55 · 03/04/2023 04:35

Post-op aftercare in the NHS is an absolute nightmare. I would certainly complain. It's the only way things will ever change.

TheHoodedPaw · 03/04/2023 05:01

I’m so sorry that this happened to your dad, and you, multiple times. It sounds massively traumatic. It’s completely understandable to be upset about this. It’s like there’s some secret complex knowledge that patients are supposed to have instead of just being cared for, receiving just basic care in fact.

Original poster
OriginalBore · 03/04/2023 07:23

Sceptre86 · 03/04/2023 01:25

No this level of catris not acceptable and you both need to complain to PALS. He should leave appointments with hos dignity intact not wanting to let the cancer run its course. That is deeply upsetting and I feel for him.You also need to look at your dads living arrangements because he needs to be supported before, after and during these hospital stays and ypu can't do it from such a distance. I appreciate you have 3 little kids as do I but was there really no-one you could have left them with to be able to pick your dad up from hospital? No partner, friends? I think you need to chat to him about his long term care and how best to support him.

We actually live close to each other. Because penis cancer is rare there are limited specialists, hence closest options are Bristol or Southampton. Under Southampton, the operation took place in UCL.
In hindsight you I should have done anything I could to make sure I collected him from the hospital and I feel awful. We thought it would be much better under the care of a different hospital.
Also, my dad kept telling them about what had happened the last times he had catheter in and NO ONE said to him - this is very common, it likely will happen again, you need to bring incontinence pants to travel home in. Why on earth wouldn't they tell him this, instead of letting him continue to believe it was an issue that they would be able to deal with before discharging him?

He actually believed that they would sooner remove the catheter before discharge than allow him to travel and then sit in his own urine for several days at home. Nope.

OP posts:
Original poster
OriginalBore · 03/04/2023 07:51

TheHoodedPaw · 03/04/2023 05:01

I’m so sorry that this happened to your dad, and you, multiple times. It sounds massively traumatic. It’s completely understandable to be upset about this. It’s like there’s some secret complex knowledge that patients are supposed to have instead of just being cared for, receiving just basic care in fact.

Thank you

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Original poster
OriginalBore · 03/04/2023 07:52

MavisMcMinty · 03/04/2023 01:51

There must be a urology cancer nurse at the Trust? It is an essential post in all site-specific cancer services, most large Trusts will have several of them. If your Dad has no contact details, just phone the hospital switchboard to be put through to them.

Yes, under Southampton he has a urology nurse. She is the one who scolded him for taking out his catheter.

When he was under bristol he was given no contact details for anyone.

OP posts:
Original poster
OriginalBore · 03/04/2023 07:55

@MavisMcMinty when under bristol, we repeatedly tried to get through to the urology dept, they would never answer the phone. The joke was that the community nurse he was under after being discharged had been instructed she couldnt touch him because it was 'specialist'. He had issues with his stitches (I cannot even remember the specifics now) too and she couldnt help him.

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Original poster
OriginalBore · 03/04/2023 08:03

L3ThirtySeven · 03/04/2023 00:14

What an utter nightmare! I’d be working with MacMillian to send a formal complaint to my MP over this. Can you afford for him to go to a private hospital locally for the second surgery to close up his wound and address the testicle issue? He sounds like he has PTSD from the hospital in London. I don’t blame him at all for refusing to go back.

Thank you. The feeling of helplessness and loss of control / not being listened to (even worse, thinking you've been listened to only to find out you havent when it's already too late) are really acute for him. Some people are more resilient than others, he is not one of those people!

The next step is to wait to hear when they are going to have him in to Southampton to drain his testicle. He is adamant he will not be going back to UCL to have his wound closed up. I am going to attend his next appt with consultant with him as well as the appt to drain testicle. He is saying he will go ahead with that procedure purely because he is in pain and he wont be made to have a catheter (we presume ).

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