Can I have a handhold and some advice? DP in hospital with tumour

[Contiblue]

DP was admitted to hospital Monday afternoon with a blocked kidney and a tumour discovered.
We have been asking GP for an appointment for the last month to no avail, despite enlisting all symptoms including pain in pelvis and groin and swollen leg/ankle, he kept saying it must be a muscle injury and have some rest.
The swelling was getting worse so he had a private scan which showed blockage in left kidney/ureter, accumulation of fluid and kidney function heavily affected.
The radiologist advises us to call GP immediately and rush to A&E which we did - this was last Thursday. A&E refused to even look at the private scan or do their own, they did a blood test and sent us home.
We called GP on Friday who said he cannot get through to the hospital.
We were back in A&E on Friday night after pain started - they did the same blood test which also showed reduced kidney function and said there is nothing they can do over weekend.
Finally spoke to GP on Monday after much chasing which told us to go to hospital.
DP was admitted on Monday afternoon and has been in hospital since - he slept on a chair on Monday night as they said there are no beds, despite the fact that when he was finally given a bed yesterday morning in an empty ward - the nurse said there was no one in that ward over the previous night.
Since then he has seen 3 different doctors for a total of about 6 minutes. The last one was this morning who simply told him he will probably lose his kidney as the blockage is a tumour, and then told him he is very busy and left.
He was told on Monday he will have a procedure to remove fluid yesterday, yesterday was told too busy so will be today, today was told no one available so tomorrow.
He has had some tests - urine, blood and scans. Not one doctor or nurse bothered to tell him the results of any of these tests. In the meantime the pain and swelling are increasing, and he is getting more and more anxious and distressed.
He is now convinced he will lose his kidney and he has cancer and worried sick it has spread as well.
I am not able to visit but I have called the ward and begged for a doctor to come and speak to him, even if for 5 minutes. I was told there is no one available.
I have been trying to call PALS all day - no one is answering.
We are going out of our minds - him, me and DC as well. Please, please can someone tell me what to do.
He is literally being left to die. I cannot believe this is happening.

I am sorry OP. This sounds utterly terrifying.

I would pester through as many channels as you can. Although the GP has not been very fruitful this far, I would still email the GP and ask him to check on your DP in the hospital as you are very concerned that he's getting worse and there is no treatment plan, plus your DP had been suffering for a month without being able to get an appointment.

I hope your dp gets some help.

Bloody hell OP that sounds very scary and stressful. Your poor DH getting anxious on top of everything else.
Hope you get some answers tomorrow. Can you afford to continue with private treatment?
Handhold tonight and hope things are looking up tomorrow.
Agree keep hassling them til you get some responses. Sorry you cant be there with him, that must be very hard. Hope you can sleep.

Look through the hospital website - there's normally someone like a Chief Administrator, a Chief Nurse, Head of Governance etc., a bunch of people who can step in - although to be honest the e-mail to the CEO should work just as well - just send exactly what you have written in your posts. Do that first thing.

Then whilst you are waiting, contact Macmillan and ask to be referred to the local nurses. I wouldn't wait till you can contact PALS, you need action tomorrow - even if someone just rings and explains your husband's case to you. So sorry you are going through this OP.

I'm so sorry, OP. That is shocking. Not only the lack of treatment for so long, but what comes across as contempt that he needs care!

I fully understand covid has put the NHS under tremendous pressure, but that doesn't mean people still aren't facing other serious and life threatening diseases, injuries and illnesses.

Aww OP poor you and DH. That’s shocking to read.

I don’t know if I’m completely ignorant here but could it be a benign tumor? I suppose they can’t tell? My thinking was that’s perhaps why they aren’t overly concerned right now? Not that this justifys any of it poor guy.

Hope he’s ok. Will you do a follow up? X

I have emailed PALS again exactly what i wrote in my post. I cannot find other emails on the website.

I have managed to speak to a lovely nurse who said the doctor will come at 6 am and the procedure to remove fluid will definitely be tomorrow, although as they still cannot confirm time, I do not trust the "definitely".

She has also checked the MRI scan for me and the results are in, which makes it even more frustrating that a doctor didn't bother coming in to tell us what it says. Unfortunately, the nurse she said she doesn't know how to read it.
I wasn't asking for a doctor to call me, just to pop in the ward and see DP for 5 minutes who is now monitored for high blood pressure due to anxiety.

I will call PALS again tomorrow morning and someone suggested Kidney Care as well. I have found the local Healthwatch too so thank you everyone for your suggestions, you're all so kind to take the time.

Whoever said I sound desperate - I am. They have not diagnosed kidney cancer yet and I have a remaining flicker of hope that maybe, just maybe it is not that so I am not sure MacMillan can help without a diagnosis.

I had some assistance emailing the MP for the area of the hospital my dad was in (not my nor his MP, though I copied his MP) who got the chief executive to email me and a member of her team called me.

We also could never get through to anyone by phone (it didn't matter how I phrased my request or who or what I asked for, phones were just never answered), including the ward, the ward manager or PALS. No phone was ever answered.

Emails are better.

With my dad we had very poor communication with the health care providers. You really have to be very assertive.

Oh gosh you poor thing.

Keep pestering and doing what you're doing, and channel all that frustration into documenting a really clear and concise timeline of what has happened so far. Add in all the names you've had so far.

sending you a handhold, OP. This sounds like a total nightmare! It is the waiting, and the not knowing that is the hardest. Here's to you getting good news soon. Keep pushing!

I have a good friend who had a cancer diagnosis, kidney tumor. His was entirely encapsulated within the kidney, so no spreading. They took the kidney (with tumor) out and he needed no further treatment. He has never looked back since it was removed.

Thinking of you both OP, I'm glad you finally got some clarification from the nurse. Please do let us know how he gets on

Thank you so much everyone, I am going to try and get some sleep and wake up for 6am when the doctor is supposed to come, hopefully we'll have some clarity then

This is awful and you have been treated disgracefully by all. And people on another post were saying the NHS isn't broken...So sorry and I hope things change for the better immediately. I would hope that if they thought it was a life or death emergency they would have acted more quickly, but even so, they should at least be letting you know what's happening and not leaving things as long as they can just because they can.

Oh op, this is dreadful. Hope tomorrow is more positive for you and your DH.

The only other thing i would add is that ihg your DH is in pain, he needs to tell the nurses everytime they come near him.

My mum was in hospital recently and when I left her there the nurse said if I came to the hospital in person the Dr would talk to me at the ward doors. Is this an option? Can you enlist the GPs help?

I didn't need to do this however as they were on the ball luckily but you must be going out if your mind.

It sounds like you are having a horrific time. From a test point of view, they are probably waiting for the cytology results for the urine, cytology at our place quote three to seven working days for a result, as the test is prepared manually, and the looked at by a consultant, who then will probably ask for the sample to be made into a 'clot' for further immunohistochemistry testing, if it is cancer to determine the type-which needs a further 24hours to be processed by histology, and then the immunohistochemistry staining may well take another day for the machine to carry out the staining, which a consultant will again have to manually look at and then probably get a second consultant to view prior to reporting. Cancer diagnosis is slow, for biopsies we try to work to 7day reporting if urgent, non urgent is 20days at the moment.

Cytology and histology which do most of the cancer diagnosis are labour intensive manual techniques, unlike blood sciences which pit the sample of a machine and get a result in a few hours.

This is bloody outrageous. All I can do is wish you strength going forward .

I'm virtually holding your hand too. I thought that gmailconfusion2's message was very reassuring in the sense that they aren't leaving him to die, the diagnosis is ongoing. The inhumane way they are not communicating this to your husband and you is a disgrace. Your message brought back my own traumatic loss as well as some memories of a Macmillan nurse who should not be working as a nurse, or in any human-oriented job at all (so please don't assume they will all be great, she was worse than the rest, and they were appallingly bad).

I want to second/third what other posters have said. I suggest you be the squeaky wheel. Ask politely and calmly for names and job titles. Put them on notice you will be making a complaint. Try not to fall into the trap of being pathetically grateful for a scrap of information. Remain in control and remember you deserve so much better than this (plural, your husband and you).

If things don't improve talk to your husband on the phone, have him discharge himself, drive to a large teaching hospital (results can be shared electronically) and check himself in there, explaining what was going on in the last place. I wish I had done this with my relative. Instead, I remained waiting and hoping that their "tomorrows" would come for procedures, test results, information and so on.

Sorry. Thinking of you both and sending positive thoughts.

Hi OP,

I hope you managed to get some sleep and you have had some clarity from a doctor this morning.
As others have said it is important to be his advocate and to push for clearer communication. The wards are covered by junior doctors overnight and I personally wouldn't want to speak to one of them about his care especially if they are on call and not necessarily one of the doctors looking after him.
I would ask to speak to the ward sister. Find out which urologist he has been admitted under. When you find this out call that person's secretary and tell them you want to speak to a senior member of the team (registrar and upwards) about what is going on.
There is no diagnosis as yet probably because whatever it is needs to be biopsied for confirmation. A person can live with just one kidney especially if the other needs coming out due to malignancy (cancer).
Try to stay calm but express your disappointment in what has happened so far. He is ultimately in the right place to get the obstruction in that kidney relieved in the first instance and then to be worked up for whatever is to come next.
If cancer is confirmed each specialty has a cancer specialist nurse that you can contact directly so patients don't have to go round the houses looking for answers.

I wish both him, you and your family well. Look after yourselves X

I hope the call went well.

We were in a similar position and I called first thing and seriously challenged the nurse. I asked a lot of questions I knew she couldn’t answer and said I would be taking action by the end of the day implying legal and a transfer to a private hospital. Thankfully the hospital took immediate action to get rid of me.

I know people love the NHS. I know that there are some poorly performing private hospitals. But when the private system works it really is very good. If you can afford to or have insurance I’d transfer.

Good luck.

This sounds awful.

I know that at my local hospital PALS apparantly aren’t open, not even answering calls.

You could try Twitter and tag the hospital? Ring and ask to speak to the ward sister....you can complain direct to the ward. Say you want to make an official verbal complaint.

I hope he gets the fluid removed today.

What is wrong with these hospitals? I remember waiting for days for a doctor to come and check my lo when I gave birth. Literally for days no doctor came and I kept asking. One said oh you are on the list of the other doctor and she kept saying im on another list. We were in there for 3 weeks! They actually started noticing us more because it had now been two weeks and we were still there in the corner. Absolute crap.

I asked a lot of questions I knew she couldn’t answer and said I would be taking action by the end of the day implying legal and a transfer to a private hospital.
OP, this. When my good friend's dad was in a similar situation, what worked was a solicitor's letter to the trust management saying that the family considers this a dereliction of duty, will arrange a transfer to a private hospital and seek costs from the trust. Everything that was "impossible" yesterday suddenly became possible.

How are things, OP?

How are things?