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.

That's absolutely awful. I have no advice in so sorry but didn't want to read and run. I'm sure someone will be along in a min with brilliant advice. Xxx

That is a truly dreadful service! I'd keep a record of everything and complain. In the meantime, keep on until you get answers. Make a nuisance of yourself. It's not good enough to be receiving such poor treatment and COVID is no excuse now as there aren't even that many in hospital with it.

Oh OP. I am so sorry. That sounds appalling.
Do PALS have an email? If you are able to say what hospital someone might know one. The only other thing I wondered was whether chaplains are still working- not for the any religious element but just SOMEONE to sit with him and be human.

I am so sorry x

I have emailed them as well - no reply.
I have called the ward earlier to ask again for a doctor and the nurse pretty much put the phone down on me.

You need to keep trying PALS op. And the ward and keep pushing. Is there another hospital anywhere near that he could discharge himself and go to?

I really don't know what to suggest, but this is totally appalling. I hope someone gives you some answers soon.

Have you considered transferring to another hospital, a regional centre maybe, even though it may be further from home? Because that is shocking.

Never in my worst nightmares did I think we'll have to push and pester to basically not be left to die. How would I even go about a transfer - there is literally no one who will speak to either me or him ?

I'm so sorry you're in this situation. It sounds as though you have been let down by a number of services over this time and lack of communication/empathy from the ward staff is now understandably the last straw.
I work in a hospital- I'm suprised you can't get hold of PALS. It may be that they are working from home during COVID- ask the ward for an email address? If you can speak to the ward also ask for the ward manager, if no luck then ask for the matron and also don't be worried to tell everyone you speak to that you are contacting PALS. Ideally email as you can get your thoughts down clearer.
Regarding the beds- it's awful that he has to spend the night in a chair, but wards where I am have been all over place recently due to COVID. Have to have strict separation of 'suspected' patients, also we have had wards that are temporarily closed due to lack of surgical activity- so although the beds are physically there, the staff aren't-so those beds are not available to patients. I wonder if the ward he's on now was recently reopened to deal with bed crisis?

The ward should try and make an appointment for a phone chat to a dr after ward round to update you. Try and bear in mind that it's not been a week yet since the private scan, if the plan is surgery^^ then it wouldn't be considered an emergency as such, but it would be done within a specified time frame (similar to two week window when GPs refer patients for cancer investigations). The issue at present is his swelling and resulting pain and the fact his procedure for that has been delayed 3 times is terrible. You both deserve an explanation for that.
It's sometime difficult for staff who are used to seeing unwell, but stable patients to appreciate the worry that relatives are feeling, particularly as you can't visit. They may not see your husband as a 'critical' case, but obviously to you this is a frightening diagnosis and no one is making clear to you what the plan is from here.
If you still don't feel you've had an empathetic (if not helpful) response from anyone then ask for the name of the chief exec.
Also if he has been given a cancer diagnosis then maybe ask for contacts of the specialist nurses- e.g Macmillan team. They can be incredibly helpful and will understand the helplessness, shock and frustration you're all feeling. Second suggestion of chaplain if he would find it helpful- they are happy to chat, won't expect him to pray! I know it's difficult to stay calm at a time like this, sending all best wishes to your husband.

Oh, that is awful!

Can your husband give his permission explicitly to the ward sister that you can be given all medical information? Then call and ask the staff nurse to update you on his condition and treatment.

If you get no joy, try PALS again in the morning. Call the chaplain? They might go and emotionally support him.

Thank you everyone. I have permission to access his info. I have spoken to 2 nurses - I believe one of them is the one responsible for the ward. Both said they cannot tell me anything as the doctor is too busy. I do understand they were busy earlier, I really do - however it would have taken 2 minutes to speak to him before they left home.

There is no chaplain.
No diagnosis yet.

Start taking names and job roles - explain to them that it will assist in the formal complaint which will be initiated before this weekend. They'll probably get their arses into gear if threatened. It's a bit dog eat dog, but he needs treatment and information at the very least. Sadly, some NHS departments have taken this covid 19 event to effectively ignore the fact that other types of patient exist and also need help.

@rosiethehen

Start taking names and job roles - explain to them that it will assist in the formal complaint which will be initiated before this weekend. They'll probably get their arses into gear if threatened. It's a bit dog eat dog, but he needs treatment and information at the very least. Sadly, some NHS departments have taken this covid 19 event to effectively ignore the fact that other types of patient exist and also need help.

Having spent a lot of time in hospital and going through similar, it's a shame but this is totally the right advice. I had to go against ever bit of my DON'T MAKE A FUSS social training and start being firm, clear and to be honest a bit annoying. You poor things, I'm really sorry you're going through this and not getting the support you need

Just read your last post- this is meant kindly- but the staff would not bleep the on call doctor to ask them to speak to a relative, unless a patient was imminently dying. Even if the nurses wanted to, the Dr would probably refuse anyway- not because they don't care but due to other pressures on their time overnight covering a large number of wards. It is frustrating yes, but apart from pain management there's not much more the medical team could/would do at this time anyway if the swelling is not an emergency issue.
I'm really sorry, try and get some sleep to be able to deal with tomorrow. x

Unfortunately I would also agree with @rosiethehen, the threat of a formal complaint and reminder of personal responsibility shouldn't be necessary, but it does often produce the results needed. 😕 You need to make your problem their problem and so on up the chain until it lands on the desk of someone with the solution to the problem.

I'm so sorry OP, I would also advise speaking to the Matron. Phone the switchboard and ask to be put through, if they can't direct you to the matron ask for the head of nursing for the department. Thinking of you x

If they are not treating him I would be tempted to drive to the hospital get him to walk out to you and then drive him to a different one.

Oh op, it sounds horrendous but please remember there's a massive gulf between not being given results and being left to die. I completely understand you are both panicking and the communication has been shocking but - and this is important - you are his advocate right now. You need to try and focus on getting him the support he needs (be that intervention or communication). You shouldn't be in this position but you are. Try to take a moment and focus, the thing he needs right now is appropriate treatment. You need to be single minded and cold in pursuing that. PALS deal with panicked relatives all day long. Be different, state what you want (communication of results, possible diagnosis and treatment plan), when you want it (ward rounds is reasonable but you may have other thoughts) and what you will do if this doesn't happen (escalate to M.P. or CQC) with a timescale (maybe 24 hours?).

I know you are worried but you can do this. I hope he has a positive outcome

I'm very sorry.

couple of tips

When my husband had cancer we had the best support and information from Macmillan (cancer charity); they have a fantastic website, specialist nurse support by phone and online, online groups for patients (and family members). Its free and they are well used to helping and advising people who are still reeling in panic and confusion. Macmillan can give you more time than ward staff can.

If you're within reach of a Maggie's Centre, I really recommend them too.

Get your husband a notebook and pen,  so he can write down  all the questions he wants to ask his doctors  AND, even more important, the answers he gets.  Otherwise , stress turns the brain to mush.  You forget what to ask then blank out what you were told.

Hi OP - I'm not sure where you are but in some areas there is an organisation called healthwatch that can help with this - esp as you can't get through to PALS. (Search for healthwatch and hopefully there is one near you).

The other thing is if you had your scans and diagnosis done privately - then they should be able to make an appropriate referral to the NHS hospital regrading what the next steps in the treatment should be and how urgent it is. There are also medical pathways that need to be followed for whatever condition it is - next time you speak to anyone on the ward - please ask what the next step in the pathway is.

Do make sure you document every phone call and make a note of names. X

Please do not drive to the hospital and take him out. Seriously.

Write what you have written here in an email addressed to the ceo and note your DH and you expect some clarity tomorrow.

This is shitty. I’m sorry you and your H are going through this.

Trying to be positive, people mostly have two kidneys and can afford to lose one, which may be why doctor was blasé. Still shit though.

My friend’s daughter had a rare kidney cancer and luckily it didn’t travel to the other one.

I hope things go ok from here!

Oh OP this is truly shocking. I am so so sorry - you sound desperate, just as anyone would be in this situation. I had to call my GP this afternoon for an appointment for a B12 injection that I need to have on a regular basis and I had to listen to 3 minutes of recorded message telling me how they weren't seeing patients at this time, followed by a very curt conversation/interrogation with the receptionist. I did think how awful it would be if I needed urgent medical help.
Now I know.

I can't help, but - a hand hold I can do

I’m sorry to hear this OP, I wanted to reach out as my husband was in a similar position about a year and a half ago, he had to have his kidney removed. This is a large operation that takes some time to organise (in our case - we are in Ireland - it took 4 weeks from diagnosis and seeing multiple specialist to actually having his kidney out). He was also on a general ward when he initially went into hospital and in the end it was a Urologist that had to give the diagnosis. Can you/he ask that he is seen by a Consultant Urologist? My husband had a MRI and CT scan to get to the point of diagnosis. They basically got him “clinically stable”, he had a bad infection as a result of the tumour, then once he was stable he was out of hospital and waiting to go to a more specialist one for the actual operation. It felt at the time that nothing was happening but things were going on behind the scenes, we were completely cracking up at the time because of the poor communication. I’m not sure how much this helps but my advice ask for the urologist.