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

OriginalBore · 2023-04-02T14:18:34+00:00

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

Hankunamatata · 02/04/2023 15:58

We all know nhs isnt fot for purpose. Was an aftercare package agreed before he left hospital? Usually aftercare is in the community.

Original poster

OriginalBore · 02/04/2023 16:02

After the operation in Bristol involving the skin graft, the hospital instructed the community nurse not to touch it because of the complexity or some such line. Yet there was no way to contact them at the hospital.
This time, my dad was instructed to leave the catheter in and 3 days later travel (2 hour drive) to southampton hospital to have the catheter removed.
My dad told all staff he came into contact with that he was bypassing the catheter and bladder in continual spasm. No help from anyone.

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Original poster

OriginalBore · 02/04/2023 16:04

Before the operation he told the consultant at Southampton, the surgeon at UCL and all nursing staff he saw that his bladder would go into spasm and he would bypass the catheter because this always happens to him. All assured him they would treat this before discharging him. This didnt happen.

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Original poster

OriginalBore · 02/04/2023 16:05

He was discharged and had to rush around paddington station trying to find his train with soaked trousers.

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Original poster

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.

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olympicsrock · 02/04/2023 16:12

Every case is Individual. I don’t understand how your father was unable to contact the team to let them know he was having problems ( ward, nurse practitioner, consultant secretary, GP) .
Did they know his catheter was bypassing when he was discharged? This is all rather unbelievable. Why was he discharged to travel home by train. Why were family not collecting him after cancer treatment? So many questions…

poetryandwine · 02/04/2023 16:13

This is awful, OP. Surely a complaint to PALS at each of the hospitals that failed to treat the spasmodic bladder or plan for aftercare is in order.

I assume you know the consultant in Bristol lied because of something your DF’s GP said? Is the GP sympathetic to your DF? If so would it make sense to pursue next steps through the GP? And to ask the GP’s advice for how to cope with that wholly unprofessional lie?

OneFrenchEgg · 02/04/2023 16:22

Until you receive poor treatment via the NHS you don't believe it will happen. It's a massive shock to find yourself on the other side of fudging, promises, evasion.
Try PALs op, they may be able to liaise for you?

Original poster

OriginalBore · 02/04/2023 16:23

olympicsrock · 02/04/2023 16:12

Every case is Individual. I don’t understand how your father was unable to contact the team to let them know he was having problems ( ward, nurse practitioner, consultant secretary, GP) .
Did they know his catheter was bypassing when he was discharged? This is all rather unbelievable. Why was he discharged to travel home by train. Why were family not collecting him after cancer treatment? So many questions…

Yes, after his op in bristol he was lut on day ward to recover. Yes he was discharged with a bypassing catheter. the urology dept in bristol would not answer the phone. They were uncontactable, yet they had instructed the community nurse not to touch his wound because of the complexity. He had a skin graft on his penis which was continually soaked by urine so did not take. My dad removed his own catheter. The consultant sent his GP a letter stating that the skin graft had "taken well". Total bullshit. My dad was supposed to go back for plastic surgery to repair his urethra but he did not go back.

Yes, again this time at UCL he was discharged with a bypassing catheter. His family (me) could not collect him from central london. I live hours away and have 3 young children.

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Original poster

OriginalBore · 02/04/2023 16:25

poetryandwine · 02/04/2023 16:13

This is awful, OP. Surely a complaint to PALS at each of the hospitals that failed to treat the spasmodic bladder or plan for aftercare is in order.

I assume you know the consultant in Bristol lied because of something your DF’s GP said? Is the GP sympathetic to your DF? If so would it make sense to pursue next steps through the GP? And to ask the GP’s advice for how to cope with that wholly unprofessional lie?

My dad nor I could face the complaints process after the whole ordeal.

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Original poster

OriginalBore · 02/04/2023 16:29

In addition, his testicle has swelled to 3 times it's normal size and he is in pain. Once at UCL he was told they would not drain his testicle because they dont do that there. They removed the cancer from his penis, have left it open. At a second surgery it will be closed up.

My dad is saying to me that he will not go back to have it closed.

The nurse from Southampton urology was not interested in anything my dad had to say apart from scolding him for taking out his own catheter. A catheter which was irritating his bladder and causing urine to pour out. Which he had told her and everyone else would happen.

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Original poster

OriginalBore · 02/04/2023 16:30

This time I am going to contact PALS. I wonder if there is a way I can get access to the consultant directly?

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Original poster

OriginalBore · 02/04/2023 16:33

Sorry, I didnt answer properly.

My dad does not have continuity in care from the GP surgery - sees a different one every time.

He knew the consultant from bristol lied in the letter to the GP, because he was sent a copy of the letter. The reason my dad was referred to southampton this time instead of bristol is because the GP acknowledged that the bristol consultant was not correct about the skin graft (lies or incompetence - the only two reasons possible).

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tothelefttotheleft · 02/04/2023 16:48

OneFrenchEgg · 02/04/2023 16:22

Until you receive poor treatment via the NHS you don't believe it will happen. It's a massive shock to find yourself on the other side of fudging, promises, evasion.
Try PALs op, they may be able to liaise for you?

Totally agree.

olympicsrock · 02/04/2023 17:01

The consultant will not have written the discharge summary- it will have been done by a junior doctor, who perhaps assumed the ski graft had taken. It is possible that it took initially and then failed.

It is possible that it was imperative that the catheter was left in to keep the urethra open so the nurse was right to say that your father should not have taken things into his own hands.

Your father should also have worn pads if he had a history/ know that the catheter was bypassing yo avoid wet trousers.

I appreciate that it must be hugely frustrating that your father has had a poor outcome but redo surgery is always problematic and it seems crazy that he was having surgery so far from home with no family support.
The NHS is not responsible for transport. Your father needed to rehab in an Air BnB locally for a few days or faniky/ friends could have picked him up.

olympicsrock · 02/04/2023 17:03

There is always 24 hour cover by the way - urology doctor or registrar on call who can be contacted by GP or ED.

poetryandwine · 02/04/2023 17:15

Again, I am so sorry this happened, and I understand that you didn’t have the stamina for PALS originally but I am glad you are going to contact them now.

From what @olympicsrock wrote it sounds possible that the misstatement about the skin graft was a misunderstanding by a jr doctor - I wouldn’t rule out the other possibilities, but we should not assume them. In any case, PALS is a good starting point.

Lacking continuity at the GP surgery is frustrating, but this is close to an emergency. Can your DF make an appt with someone for the purpose of explaining that he needs their help being believed? I think the best strategy is to concentrate on how to move forward. Travelling in soaked trousers was surely distressing but it is a symbol and someone could argue that your DF should have known to wear pads. Don’t get distracted by that! Look forward to what you need to achieve now.

With very best wishes

rwalker · 02/04/2023 17:15

The problem is nothing is joined up one hospital will not know what the other done

this is where it falls down the left hand doesn’t know what the right hand’s doing
man’s you get passed from pillar to post

FirstnameSuesecondnamePerb · 02/04/2023 17:23

I am not in the least bit surprised. My dmum had a quad heart bypass. There was zero after care offered. She was a widow living alone. 4 days after surgery I had no choice but to collect her and drive her 5 hours to my house. She then got infected wounds and ended up in hospital near me. But I had to fight for that. Their serious suggestion was to put her in the car and drive her 5 hours back.

Original poster

OriginalBore · 02/04/2023 17:29

olympicsrock · 02/04/2023 17:03

There is always 24 hour cover by the way - urology doctor or registrar on call who can be contacted by GP or ED.

We were given no way to get hold of a "urology doctor or registrar on call" when he had his op in bristol. We called the ward but they never answered the phone.

And the skin graft NEVER took because it was constantly covered in urine.

Re his most recent op - he was assured he would not be discharged with a bypassing catheter again , so why would he have brought nappies with him to wear home.

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Original poster

OriginalBore · 02/04/2023 17:34

olympicsrock · 02/04/2023 17:01

The consultant will not have written the discharge summary- it will have been done by a junior doctor, who perhaps assumed the ski graft had taken. It is possible that it took initially and then failed.

It is possible that it was imperative that the catheter was left in to keep the urethra open so the nurse was right to say that your father should not have taken things into his own hands.

Your father should also have worn pads if he had a history/ know that the catheter was bypassing yo avoid wet trousers.

I appreciate that it must be hugely frustrating that your father has had a poor outcome but redo surgery is always problematic and it seems crazy that he was having surgery so far from home with no family support.
The NHS is not responsible for transport. Your father needed to rehab in an Air BnB locally for a few days or faniky/ friends could have picked him up.

He cannot afford to stay in an air b n b in London. I cannot go to central London to support him with 3 young children to look after at the other side of the country.

You are quick to blame me for not supporting him or my father for not wearing nappies.

What about the fact that his wound and dressings were constantly soaked in urine and he was discharged while bypassing.

Is this commonplace? Should the staff have told him to pack nappies so that he could go home without being soaked in urine?

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Original poster

OriginalBore · 02/04/2023 17:36

This time with care under Southampton we have been given the number of a nurse at Urology which is far better than what we were given for bristol (no contacts).

However, she is not interested in the constant pain and wetness my dad was experiencing. Just scolding him.

If I was in his position I would have taken the bloody thing out too.

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JenniferBooth · 02/04/2023 18:18

Jesus what the fuck did i just read. Would like to point out that families cant always be there to help out when they have moved away Arent we always being told on here that we should move to where we can afford to live. Which will sometimes include being miles away from family. Yet are still moaned at for not being available at the drop of a hat.

The way they have treated your dad is horrific.
Oh and the reason the consultant knows he can take the risk of lying is the NHS hero rhetoric

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.

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.
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.
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.
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).
Some GPs may also have access via an email or website. Worth checking.
Calling 111. They can book appointments for urgent care centres or out of hours GPs if needed.
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.
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.

InSpaceNooneCanHearYouScream · 02/04/2023 19:18

@OriginalBore @olympicsrock wasn't blaming you personally, she was simply pointing out that it isn't really acceptable for a cancer patient to be making their own way home by train after being discharged home following that type of cancer surgery. It would have been better if arrangements had been made to be transported home by friends OR family, or failing that, hospital transport?