Hospital Dilema - Advice Would Be Awesome

Not often that something really angers me as i'm a bit of a hippy but I am worried.

My fil was rushed to hospital by ambulance a while back and diagnosed with probable gall stones. They then ruled this out and diagnosed Pancreatitis. My mil is old fashioned and hates bothering the nurses and doctors so has spent the last few weeks sitting by his bed worried sick but in the belief that at some point somebody will bother telling her what is going on, she is terrified that if you make a fuss or be a pest they will be mean to her husband - to be fair to her, this did happen when she had my h2b so her fears are well founded. Unless we ask, nobody tells us about scans and results etc.

I'm pretty well clued up on how hospitals work in that it's more about paperwork and business than understanding and having the time to work out the psychology of patients and their families but I have a few issues I am unsure how best to deal with.

When admitted, I spoke to the doctor and explained that at the beginning of the year, fil had his diabetes medicine changed and that is the only lifestyle change. I asked him to look into if it could be a cause. They immediately ruled this out and told me they'd checked his medication. Within three days of being there he went from being really ill to being desperately ill. He began hallucinating, seeing and auditory hallucinations and was really frightened. He called me to ask if Ben was ok, genuinely scared something had happened, he saw children in his room, he gave information on patients that weren't in existence - we are not talking small issues here, this was really terrifying and the hospital had not even noticed. Mil only told me about it after a few days as she'd thought it was an effect of the morphine and would die down rather than get worse.

He had only one pillow, was on restricted fluid intake and no food for a week which wrecked havoc with the diabetes. He was put in isolation which made the hallucinations worse. All the time I was calling in and going in to be told he was doing fine. I suspected sceptacemia and was not convinced the morphine was causing the hallucinations as even days after it ended, he got worse and he'd barely had any in the first place as he was self-administering and was refusing to use it.

Little things like he was prescribed surgical stockings but they lay on his bed for days unworn before mil realised he was meant to be wearing them. As it's a pre-surgical ward, she'd assumed they were there only in case of an operation. The doctors have had no issues talking to me and have been lovely but every time the shift changes so does his diagnosis. At one point it went from being pancreatitis to a chest infection.

Anyway... having watched him get worse and worse and weaker, they have now declared him anaemic and with suspected mrsa so back to isolation and all staff going near him wearing glove and aprons. They finally, finally realised the new diabetic medication can cause pancreatritis and since stopping it two days ago, his hallucinations and the various IV thing have gone. They wont let him out incase he needs a transfusion but what perplexes me is that they don't let him eat for a week (which was absolutely the right thing to do), but don't administer iron tablets, don't let him eat more than a snack a day and then say he can't go home due to anaemia and needing the loo lots. They have told him him may need a transfusion but how on earth can his iron level recover without food and iron tablets with some vitamin c to enure it's absorbed! Surely this is basic common sense?

He is so weak. What should have taken a week to respond to the right antibiotics and then further recouperation at home, has got worse and more complicated. They have ruled our pancreatic cancer and are working on the theory the pancreas was damaged by his diabetic medicine. I'm not entirely convinced they have this all right. I do agree the medicine is the most likely culprit but am very unahppy they were told of this possibility and ignored me. I am unhappy that when my mil finally got the courage to ask to speak to a doctor as she couldn't understand the nurse she was curtly asked "why" and I am unhappy that a terrified man that is normally razor sharp was reduced to a completely vulnerable state which culminated in him trying to escape the hospital in the middle of the night because they would not take the hallucinations seriously.

The nurses are very nice but none of it adds up. EIther it is pancreatitis or it isn't. He was already on antibiotics that kill MRSA so how did he then get it days after starting them? How can you keep someone in because they are anaemic yet do nothing to prevent it? He will most likely end up with a transfusion as he has no intake of iron unless they prescribe iron pills or let him eat more.

How much is too much? I want to contact the patient liason team and make an enquiry stating that I am concerned but as my mil is anxious that if we make a fuss they will be mean to fil, this may be a bad thing to do. I'm genuinely worried that they are not getting this right and evewry shift that changes, so does the story. Him trying to escape was discussed as a minor confused incident. It's not minor to a man that is petrified at the time and wanted to feel safe. Thankfullt the hallucinations have stopped but it should never have got that far, they should have listened rather than just assume it was the morphine that they knew he wan;t using!

Apologies for the rant. I'm so worried. He's in there, pale and weak and not getting better. After the pretty inevitable blood transfusion, then what? Their answers make no sense. What would yoiu do? Would you contact patient liason or leave it and hope it all improves. I don't want to get anyone into trouble, I just want consistency and a reasonable level of care with people telling him and mil what's happenning. He is currently back in the isolation room that he had all the hallucinations in. Clever move that for encouraging morale! I only hope that when we get him out, he wont remember all this.

 

I say contact patient liaison, or stand in the corridor and shout and scream until someone listens to you!
You are a reasonble, literate person, and will have no problem stating your case in an effective way.
Worrying your MIL a little more is a small price to pay if you get results, and she will thank you for it in the end.

 

Thanks xx

I've just called them again after doing a lot of research from university research websites to get the most up-to-date info and dicovering there are two forms of pancreatitis and that the first requires urgent iv fluids to be administered - which they did the opposite and restricted it to 500ml per day. I asked which form he had, they didn't like the question but answered me bluntly and he has got the form that needs lots of IV fluid.

I asked why he can't go home if it's just the anaemia keeping him in to be told that his iron levels are dropping but not low enough for a transfusion - yet!!! How about administering some bloody iron then??? Grrrrrrrrrrrrrrr. As for the MRSA, they have not yet started his antibiotics for that despite telling him that they had started on Friday. Now they are waiting for the cultures to be grown but the team that do this don't work weekends and will be busy with the backlog on Monday so we can expect the results mid-week. Amazing. My fil has a condition of pseudocysts within his pancreas, it has responded to antibiotics but now a secondary infection that is suspected to be MRSA cannot be treated until they have the culture results. Policy used to be administer then wait as it's better to have the drug and respond than get worse!

To completely finish me off, I asked about futher scans etc to confirm the cysts have responded to antibiotics and gone and was told they don't do that now as it's assumed they will just go if the pain has gone. All the sites I have looked at confirm that a second CT can is necessary to be sure the cyst has gone before removing the antibiotics or it'll come right back.

I found a possible cause of the hallucinations too that is more probable than a reaction to the morphine he never took. If untreated or not treated correctly (i.e dehydrating the pancreas apparently), the enzymes attack the pancreas wall and amylase levels go out of control causing diabetes and infection to rage out of control. Fil already has diabetes and it is now out of control. The result of this is sceptacaemia which requries the same antibiotics as the one he now has. So, in short, dehydrating him may have been what made him suddenly get so much worse a few days after being in hospital. One of the complications of such a septic level of toxins in the pancreas and blood is sudden and severe visual and auditory hallucinations.

I'm not a doctor but I do follow common sense. I absolutely believe they do their job to the best of their ability but not every case is text book clear and in this instance, my fil was treated for chronic pancreatitis when he has acute pancreatitis. Same organ, different conditions. Had they just administered iv fluid in the beginning and checked his medication which states on it's leaflet it can in rare cases cause pancreatitis, things may be a bit different.

Patient liason here I come on monday. I dare not tell my mil the conversation changed from just anaemia to his pancreas being unable to balance itself and function at present as I can do nothing about it until tomorrow. I was really polite on the phone but got the impression they did not like more questions. I don't want to work against them, I just want the truth and it seems to be that the truth is that he's not out of the woods yet. They have no definite cause and no forward thinking on treatment but are just hoping he responds to the antibiotics enough to kill the cyst without surgery.

I must be the patient's relative from hell! I am so cynical having had my daughter develop SSSS as a baby and nobody believing me that's what it was. I was just a mad mother who was covering up a chemical burn to my child not the genuinely desperate woman whose baby had developed a very rare skin infection causing it to peel away like tissue paper. After that and other things over the years, I am cynical and I always check both diagnosis and treatment against common sense and logic.

Sorry to have ranted. I'm just very worried about my lovely fil who deserves better treatment. Oh and the classic - given that the staff all have to wear gloves etc when near him and he has a big yellow sign on the door warning people, they have told him he can use the water fountain at the nurse's station as it' cooler and nicer than the tap in his room!!!!! Isolation unless thirsty obviously :lol:

 

I'm so sorry to hear what you're all going through, I would most definatley make some sort of complaint!

We were in a similar position wiht my grandfather last year. He was admitted into hospital late at night with really bad stomache pains and unable to pass water, we were given no answers as to what was wrong we were just told that he would have to have a temporary cathader (Sp?) Within a week of him being in hospital he was confined to his bed, he found it really painful to move and the only pain killers they were giving him were paracetemol. He was also diabetic(tablet contolled) and having a break from chemotheaphy for bowel cancer which had spread to his lungs. He was hardly eating yet nurses just didnt seem bothered, he could hardly breath as one of his lungs had collapsed and they said they were going to put him on a nabaliser(sp again?) The only time he had this was when we went to the hospital at visiting times and asked for it! Numerous times I found his medication just lying around left out for him to take and found his diabeties tablets on the floor, when I asked the nurse if he had taken them i was just told 'we dont know'!

After 2wks of him being in hospital and him being moved from bed to bed he started having hallucinations, he even tried to phone the police one night because he had seen a plane crash and he thought my grandmother was on it. We were then told, very causualy, that the cathader would be permenant because my grandfather was to old to be operated on (he was 76) and when we asked what was wrong with him we were just told these things happen!! We aksed over and over about the hallucinations and they wouldnt believe us that he was having them because he was such a quiet man he would never say anything to the nurses.

We then had the cancer care team put in place to get my granfather home 'to make him as comfortable as possible' as he also had a week heart.For almost 3wks we were told he would be coming home 'next week' Then he was moved into another room because there was an outbreak of C-Diff. One man had already passed away in the room he was in and most of the others had already caught it.
He started getting gradually worse day to day once he was moved and the hallucinations were getting really bad, he was really confused and couldnt remember anything.
Almost a mth after he was admitted the district nurse rang the hospital to see how he was and if there was any signs of him coming home only to be told that he had caught the C-Diff bug! She informed us but we wasn't told exactly how ill he was. When we turned up at the hospital that night he was totally un-recognasable, he couldnt talk, he hadnt eaten for days and had any medication for days. I was furiuos that no-one from the hospital had informed us to exactly how ill he was.
The next day he was worse, we spent the day trying to get him to drink in the end I had to insist on them putting in an iv for him to get some fluids. The dr came to put in an iv but it was too late he knew his time was up so he fought with all the energy he had left to stop them and then sadly he passed away.

We've gone throught the angry stage where we wanted to complain but they put his cause of death down to the cancer as 1st and the bug as 2nd, and we just couldn't put ourselves through it all again so we didn't. Good on you for I say!

Sorry to take over your post!

 

Ben called his brother who says the hospital have told mil that I am calling and having a go at them (really upset as I have been curteous, exceptionally understanding and thanked them loads everyt ime i've spoken to them and not once told them I was upset). They told her their excuse for not telling her stuff was that they had already told me and i'd not passed it on which is absolute rubbish and ended up by asking her if she wanted to restrict access to his information to just her. His notes have been entirely re-written by one person and the old ones vanished and i'm now seen as the annpoying relative that looks stuff up on the net and scaremongers.

In fact. I have only looked at their own NHS guidelines for the condition they said he had and have looked up c-diff. By doing so I have dicovered that they are not saying what they are testing his stiools for, it's not going to be MRSA as thagt's not how they test for it so they've lied / mislead us. Turns out he ha all the symptoms of clasic c-diff and none of mrsa. I'd never heard of it until welshbrides post. I read the NHS guidelines for any suspected infectious illness requiring lab tests and they are to provide access to a lab 24 hours a day 7 days a week for the sole purpose of controlling outbreaks of anything infections. So much for the 'lab doesn't open until monday' thing!

There is a chart they are meant to follow and they've not done it, he's on the broad spectrum antibiotics specifically not recommended for his age / condition / diabetes and that are known to increase the risk of c-diff which owing to the nature of pancreatitis, he is at higher risk of than most. Hopefully it is not c-diff but another infection but whatever it is, they have made me out to be a bully when all I did was ask what type of pancreatitis he is on and what medications. I have genuinely not said a curt word to any of them, that;s really upset me.

So now I have fil in hospital and half the family thinking I am causing trouble when I was right to ask, if the doctors had listened to me telling them he doesn't drink alcohol and had new meds for diabetes on that first day - he'd have been treated for the right thing from the start! They totally overuled my word and assumed he was a drinker in denial and had lied about it coming on so suddenly. WHat can I do? I am stuck now and have for the first time, really upset mil and bil. After all, i'm not a doctor or nurse.

Really upset now, am off to hide in the bath and hope it all goes away. It looks like he's being tested for c-diff but they wont want to tell anyone as the implications for them are annoying as they get into trouble. Seeing as they didn't change his catheter for ages and it ended up backflowing amongst other things, it would not suprie me if poor hygiene is the cause. WOuld just be nice to know what's going on and not fobbed off and accused of annoying them when I was so careful not to do that.

I must be good, take my own usual advice and focus on something nicer like my wedding. Just so worried about fil and now that i've upset everyone too. Rubbish rubbish rubbish to trying to help!

 

However shitty things might seem now, knowing that you did your best is soo important.
Are your family REALLY upset, or are they blindly trusting the people in the uniforms?
I bet if they read this thread they would know how important your family is to you, and if they don't, I'll tell them.

 

Poor hygine is the main cause if C-diff spreading! Its pure lazyness in most cases!

You are doing your best, its obvious how upset you are and how much your family means to you.

Stay strong hun, sending big hugs((((()))) xxx

 

oh Becky

This is so awful for you! You were only trying to get information and help your MiL! I appreciate that the doctors and nurses might think you're trying to do their job's for them, but that's no reason to tell lies about what you've said / done to your MiL and create ill feelings.

I think that's a pretty low thing to have done lying like that .. it just proves that they weren't / aren't doing they job properly and needed the kick up the ass you have provided!

I am sure that MiL and BiL understand why you did what you did, and when the fears have passed they will clearly see you did what was best.


could he be moved to a different hospital at all?

sending you cyber hugs hunny... and I would have done the same as you, so don't feel bad x

 

Thank guys. I had a long bath and thought (I always think in the bath for some reason) then gave in and called the hospital again. Spoke to the nurse on night shift and explained that when fil went in and several times since, I have been told I am welcome to call with questions at any time. She re-inforced this and said that was absolutely correct. I then mentioned i've always thanked them for their work and time but have asked questions and that this has been communicated back to mil in a potentially negative light which has upset us all. she confirmed again that I am welcome to call in whenever and that my questions were never a problem, it's not like I call them loads of times a day, most days I don't call at all.as we are there. So, it seems the one nurse that lied to us is the one that told mil negative stuff.

I went on to ask if fil had suspected c-diff and was told that yes, this is the case. It's not suspected mrsa. Given that mil felt unable to challenge them at any time or give them information, without me they'd not have known about the new medication or particularly the extent of the hallucinations, nor would they have had communication about other things as mil was too scared to ask or tell them things fil had said to her. I may not be a doctor but I knew thing were not adding up, I just didn't know what. Thanks to welshbride for giving me the oomph to look up c-diff as i'd never heard of it!

Tomorrow mil will be going in and hopefully the cultures will be back and if it's positive then at least she will see I was right about it not being mrsa testing. She's a very scared woman whose husband of well over 40 years is very ill and she's taking a bus to travel across dartmoor to get to see him dailyand looking after nan and run the organisation they voluntarily work with. She's not confident in hospitals and was terrified that asking questions would cause them to be mean to fil. The nurse that has been fobbing her off daily is not one I see as we go in at different times, she's managed to upset her to make her think I was getting info that she should have been given and not passing it on, it's her worst nightmare - exactly what me being involved was supposed to stop. All thanks to one nurse. I really started to doubt myself tonight and went over and over conversations to see how on earth anyone could think i'd been rude.

I'm not saying anything to mil now, she's tired & stressed and tomorrow when they have to admit that he has been isolated for a totally different reason to mrsa, the nurse that lied will be proven wrong. I love my mil and fil to bits and the series of cock-ups are infuriating. Given the level of reports they have to file and procedure they have to follow for c-diff (I managed to get a copy of their diagnosis and management guidelines - which they did not follow correctly), the hospital will be desperate for it not to be c-diff.

Makes me cross - mil lives with nan who is elderly and at risk from c-diff infection when she is on antibiotics and I think she takes a low-level one all the time but can't remember why. They should have told us the reason for the isolation. It's really easily passed on but only threatening in those with compromised immunity, children under 2 or the elderly.

THANKS ALL FOR BEING LOVELY XXXXXXXXXXXXXXXXXXXXXXXXXXX

 

Popple I'm so sorry to read this and hope that you start to get some answers soon - I'm sure the family will realise your helping and not causing trouble, in my experience it's those in the hospital doing their jobs wrong or not at all that get defensive and claim the patient/patient's family are causing problems and the ones in the wrong!

I really hope things get resolved quickly and that you have your fil home and well, also stop doubting yourself your doing the right thing. As for hygiene & being in isolation (except for when thirsty) a few years ago I was admitted to the infectious diseases ward with at that point an unknown condition (turned out to be mumps - GP told us a week after i was sent home) yet I was allowed to freely wonder in and out at my pleasure - also got told i had high blood pressure and they completely ignored me telling them that it was only high because i didnt want to be there and they wouldn't let me home (the DR. in A&E told me I would die if I didn't stay in - in a round about way but that was his meaning) and that I had been out and smoked about 5 cigarettes in about 30 min so of course it was gonna be high. But I didn't follow the rule book for mumps so they didn't know what it was and then sent me home after 5 days atill not knowing and like I said about a week later the GP rang to say it was mumps! It was a good job we kept me away from the kids but I still had contact and kissed OH so he could've got it too but luckily didn't.

OOPS I have taken over now.

Stay strong and fight them! They are only worried cause they have done wrong!

We are here when ever you need to vent hun - big hugs xx

 

Thanks Princess. Mil spoke to them today and asked them directly if he was being tested for c-diff or mrsa and they admitted it was c-diff but haven't given the results yet. They lied to her and she's understandably upset. They also totally denied aying that fil was going to need a blood transfusion yet they told fil, her, bil and myself all at different times! I feel sad that she has had her trust in them shattered but also glad I was right about it not making sense to be mrsa.

 

Oh my goodness, what a horrible, frightening position to find yourself in. No wonder you've been so worried. There's nothing more frustrating that an unjust situation - I really feel for you going through this. Your poor father in law too! Like you say, I hope he doesn't remember it when he's better. You are absolutely doing the right thing by kicking up a fuss, and even if your MIL and BIL don't see that now I am sure that they will realise when the situation has calmed down a bit.

Big hugs from France xxx

 

Thanks Becky, am hoping we can get him out of there in a few days. He was only in need of antibiotics and a scan when he went in. He's been in at least a week extra thanks to the additional infection caught in there.

 

Gosh waht an awful situation to be in . It's scary that the medical staff don't seem to know what they are doing and telling you conflicting things and even lying to you!. I feel so sorry for your family and hope it all gets sorted and that you FIL gets better soon. Noone deserves to be treated like this. I'm sure you in laws won't hold anything against you as you are genuinely considered for your FILs welfare and worried about it and the ways hes being looked after.

Welshbride - also sorry to hear about the situation with your grandad. So upsetting. My grandad was in a simlar position too. At 95 he was still living by himself in a 3 bed house but could no longer get up the stairs. He was happy to move into sheltered accomodation and he made lots of friends. However he deteriorated really quickly and was hospitalised 4 times in a month and diagnosed differently every time. He eventually died in hospital the fourth time on my bday a week befre his 96th bday. Put it down to pneumonia in the end, but he had had a bad fall the last time he was hospitalised and we found he had contracted MSRA. Who knows what happened in the end.

What I would say is that nurses do work hard and aren't always kept in the know about a patients health, medication etc and do as they are told and often get the brunt of disapproval by families. My sister is a nurse in anasthetics and recovery in a large hospital. She is loving and kind and works extremely hard but her department is extremely busy and majorily understaffed. They have no money to hire any more nurses yet are in desperate need of them. It annoys here that she doesn't get the time to spend time with each patient and listen to them properly as shes overworked and also has to deal with complaints when shes doing her best! Hence why different nurses will tell you different things and appear unknowledgeble because they genuinely aren't sure about something etc. Its no excuse for the way you FIL has been treated, I just know what a good job my sister does under tough circumstances xxx

 

I agree with you about staffing pink. Part of the issue is that nurses are no longer expected to clean as part of the care regime so if anything needs doing they call in the team of outourced hospital cleaners - which are based elsewhere in the hospital and take forever to do anything as they are also understaffed. There is also the problem of defensive behaviour. They are all scared of being taken to tribunal for anything so they mislead by their wording so rather than say fil has suspected c-diff and they were testing for it, they said he had a reaction to antibiotics. Now this is not untrue as c-diff only occurs in patients who have a compromised immune system due to being on lots of antibiotics. So technically they didn't lie... they didn't tell the whole truth.

The hilarious bit is that they released fil this morning - when he's getting worse! After probing, he hadn't had the c-diff test results back soooo by getting rid of him earlier than they should they can not have to report the c-diff to the infection control unit and thus avoid a fine. Clever move. So they let him go knowing what he has (their words not mine). They can hionestly now say they have had no confirmed case of c-diff...

 

Popplemaster, Hope the sitution is improving. H2b and I both work for the NHS and i really hope we dont treat people like this, my dad is currently in hospital too so i know it from the other side too.

Have you contacted PALS? if anything it needs to be reported so that they can look at the systems and communication. Sometimes despite the best efforts of everyone things go wrong and communication is rubbish, but if no-one reports it then staff continue to be expected to be rushed off their feet or not change their practice etc etc.

I really hope he is getting better soon and love to you and all your family

 

Thank you. I'm torn as to what to do now. I have the details for the patient liason organisation and after last night being told they were refusing to tell me the test results as I was not next of kin - despite both mil and fil at this stage having given me absolute permission on the file to enquire and be told what was going on. The staff nurse refused to let me talk to anyone and said it was on order of the doctor - who was not available. Amazing. I was really shocked as I have never, ever been rude to anyone or expressed disdain even when I should eprhaps have done all because I knew how delicate the ituation was with mil and that if I upset them, they'd cut me off again. It really does seem the second I mentioned c-diff they suddenly refused to talk, refused to give any straight answers and chucked fil out when he is worse not better!

I know in the end mil was really upset as they showed they were lying to her by accident when she also asked about c-diff. They had told her they were just testing for mrsa and that no other test was done - i'd already been told by the other doctor that more tests were done and one nurse had confirmed he was being isolated due to suspected c-diff. I don't want to get her into trouble as she is the only one that was open and honest.

I'm going to think about it, i've got notes and will attempt to write a chronological, unemotional diary of events and send that in as a complaint. I'm able to understand why it happened but that does not make it acceptable. Even the nurses that lied were lovely people, they were just scared of getting into trouble I guess. Only one really gets me angry for her unempathetic and unreaonable treatment of both myself and mil. The doctor that refused to listen to me saying about fils new medication and the fact that he doesn't drink came to the wrong diagnosis because he did not take on board the comments and the horrid nurse that I had told of the extent of fils hallucinations and refused to take it seriously. Those deserve to be in trouble but the others just need a warning about cleanliness and maybe a little lesson in psychology - not all patients are brave enough to talk to them or ask questions.

The key thing is fil is home and safe just still very ill. I'm hoping mil will be calling the local gp and asking for help if there is a community nurse as he's so weak and fragile and the c-diff symptoms need to be controlled, the hospital did not alter the meds so if he was positive, he needs different antibiotics. I so want those test reults. Fil probably wont have the stength to ask for them but hi gp might.

Thanks all, this has been an awful week and i'm till worried but glad fil is home being properly cared for in a clean bed in a clean house with people that love him around.

 

She needs to call his GP! the Gp will access the nurses etc etc or even readmit him if he is unwell (hopefully to a good ward!)

 

OK will sort if with mil. She's really worried his diabetes is out of control. After telling him he needs to rest his pancreas and kidneys they gave him curry! I really do give up. Having studied human biology and enzymes, this will have only made it work harder not rest.

 

Good luck with it all popplemaster. If need be you can always ring the gp, he wont be able to tell you anything but you can say your ringing on his behalf and you are concerned (you prob best getting his permission first). Try not to stress too much though