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Infection - not being treated effectively

User
Posted 28 Dec 2018 at 10:36

Hi everyone,


My father is in hospital with an infection.


 


He recently stopped chemo and his white blood count was low.


However, now they reassure us the white blood count is normal.


 


He was diagosed with the flu and taken to hospital about a month ago - coughing, etc.


He got better and was released.


Then his health declined again - non-communicative, immobile.


 


He has then readmitted and has been in for over a week.


This time the only symptom was fluctuating high temperature.


They have tried different antibiotics but the problem still persists.


 


We have received conflicting information -


1. It is a type of flu.


2. It is not a type of flu.


3. He has has caught different infections while being admitted.


They are also giving him x-rays quite frequently.


 


Any advice would be great.

User
Posted 28 Dec 2018 at 11:06
Hi Cam, deep seated infections can be notoriously difficult to diagnose, identify and then treat - particularly if there is a possibility that the infection has been one thing but was then followed by a different one. As you will be aware, chemo can make someone much more susceptible to infection in week 2 of each round but it sounds like dad is past the week 2 of his final dose?

It would help to understand why he was put on chemo. As it is two years since he started hormones, it doesn’t sound like they had put him on the ‘early chemo’ regime so is it the case that his HT has failed and chemo was offered as a palliative treatment? How ill (or well) was he before the infections? Could he be moving into the end stages, which are often denoted by confusion and loss of communication? Has the cancer spread since he started HT in 2016? If so, where to?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Dec 2018 at 11:27

Hi Lyn,


Thanks for taking the time to reply.


It is now two months since chemo ended. It ended because of concerns for his heart. His PSA was about 40 and his bone alkalyne levels were also relatively low.


"As it is two years since he started hormones, it doesn’t sound like they had put him on the ‘early chemo’ regime so is it the case that his HT has failed and chemo was offered as a palliative treatment?"


Yes, this is the case. We were waiting for him to go onto radium treatement before the infection. They also reassured us there were many more treatment options for him.


"How ill (or well) was he before the infections?"


He was very well before the infections going for half mile walks three times a week.


"Could he be moving into the end stages, which are often denoted by confusion and loss of communication?"


This is what we are worried about but a doctor recently said it was not the case with him.


"Has the cancer spread since he started HT in 2016? If so, where to?"


This weeks scan indicates that the tumour has not changed size since November 2017.


The bone mets on his hip have required further radiotherapy.


 


 

User
Posted 28 Dec 2018 at 13:10
Well that seems like quite a bit of good news although of course you will be worried about the infection until they can get on top of it. Even one or two chemo sessions can make the hormones much more effective.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 31 Dec 2018 at 17:01

Hi Lyn,


I visited hospital today to find my father curled under a blanket confused and with a high temperature.


When I went outside and asked the nurses they were dismissive and wanted to continue gossiping - claiming they'd taken obs 30 mins earlier and he was fine.


I calmly noted he wasn't.


When they went inside they were shocked and then tried to reassure me it was just his temperature causing the shivering and sweating.


My father was not very responsive.


I checked the charts and the indicated he had blood oxygen at 88% and he was not on any oxygen. They then made their excuses after putting him on oxygen and left.


He slowly came around.


I then checked what antibiotics he was on.


It was then I discovered he was not on ANY antibiotics just mild pain relief and antioagulants.


I waited until the next obs one hour later - his blood oxygen was up to 94% so they removed his oxygen pipe.


There was no doctor to talk to on the ward. My mother is visiting tomorrow to discuss the matter.


Why no treatment for the infection? His temp fluctuates form 36 to 38.2 C

User
Posted 01 Jan 2019 at 03:45

Hi, hope you have some answers from the hospital by now.  Could it be that they think there is not an infection and they think it is a form of flu? They would not give antibiotics for flu as it is a virus and antibiotics will not work on a virus.


Hope your Father gets better soon and is able to come home soon.

User
Posted 01 Jan 2019 at 09:25
A viral infection is of course still an infection but, as you say, antibiotics have no effect against viruses.

Chris
User
Posted 01 Jan 2019 at 11:07

My husband had flu on chemo and was given intravenious antibiotics throughout the six days he was in hospital so although it is a virus, its not true to say that they wont treat that way to prevent chest infections developing etc. This sounds close to neglect to me, i would be quite vocal in my questions to the medics here. Good luck. I really think some medical staff should concentrate on patients and not their private lives (having seen this scenario far too often). Please feel free to ask to see the ward manager and tell them what you found.


 


Devonmaid

User
Posted 01 Jan 2019 at 16:15

Thanks everyone for your replies.


Devonmaid - my mother just came back from the hospital and she is very concerned.


My father now has tremors and is resistant to drinking fluids.


He has NOT seen a doctor in three days. Again, the nursing staff were unhelpful and dismissive. There is notable lack of empathy and compassion from them. They give me the creeps. There's a bad vibe with them.


My dad is in an isolated room by himself. His temperature continues to fluctuate.


This all seems to be down to the infection.


My mother is going to ring the hospital to demand answers and comment on what we have seen.


 


 

User
Posted 01 Jan 2019 at 16:49

My mother just finished talking to the ward sister.


We have booked an appointment to talk to a doctor tomorrow morning.

User
Posted 01 Jan 2019 at 17:39

I would be demanding to see a Doctor now, is he drinking at all?  I find it hard to believe that he has not seen a doctor in 3 days!  How often are they monitoring him?

User
Posted 01 Jan 2019 at 18:21

He drank two cups of water while my mother and cousin visited him.


They then refilled the jug.


He was on the phone about an hour ago and was more lucid.


We confirmed with the ward sister on the telephone that he has NOT seen a doctor in three days.


They are supposed to be monitoring him and taking obs every hour - I will check his notes tomorrow to see if this is actually happening.


He is in a room by himself because of the risk of infecting other patients.


The nursing staff are cold and distainful. No empathy. The tea lady is lovely and has empathy though. The foreign nurses when we meet them are also warm, professional and have empathy.


 

User
Posted 01 Jan 2019 at 18:28
What questions should I ask the doctor tomorrow?

Any advice would be very appreciated.

Many thanks.
User
Posted 01 Jan 2019 at 18:37
I've never heard of a hospital which didn't have a morning "ward round" where every patient is seen by a doctor!

Chris
User
Posted 01 Jan 2019 at 18:39
I depends whether you are seeing his own specialist or just a general ward doctor. I would ask
a) whether he is on a specialist oncology ward or a general medical ward
b) if on a general ward, can he be transferred to oncology
c) has anyone informed his oncologist that he is in hospital
d) who on the ward is liaising with oncology and how often are they in contact with each other
e) is he moving into the end stages of his life
f) if so, has anyone considered whether a move to a hospice would provide better care for him

As a family, have you discussed how he would want the end to be? Would he prefer to die at home, in a hospice or in a hospital? Does your mum have the capacity to be able to care for him at home? I kidnapped my mum from a hospice because I wasn't happy with the care she was receiving but I had to fund a private ambulance to move her. Once I had her home, the local authority social work team and home care dept both helped with things like proper medical equipment, a rise & fall bed, etc and the GP took over responsibility for pain relief with the palliative nursing team.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 01 Jan 2019 at 18:58

Hi,


Thank you for the sage advice.


Recently (within the past two weeks) more than one doctor has advised my father that he is not in the end stages.


The ward is a specialist oncology ward.


However, much of his contact has been with junior doctors. And we have confirmed that he has not seen ANY doctor for three days.


He cannot have radium treatment until his infection has been treated effectively.


This is why it is vital that it is treated effectively and speedily.


Yet, we did not know until yesterday (when I checked his drug chart) that they have stopped any antiviral/antibiotic treatment - despite a temperature fluctuating regularly up to 38.2/4C. Also, they had left him with a blood oxygen level of 88% without oxygen.


The nurses have shocked me with their callousness, indifference, hardness and resentment - they're working on an oncology ward. I feel they have been socialised in a negative toxic environment professionally and perhaps socially.


 

User
Posted 01 Jan 2019 at 19:15

Hi Cam .  If you are not happy after seeing the doctor tomorrow find the PALS office and tell them of your experience. We have always found things improve once they get involved. Also ask that you speak to a consultant and are not fobbed off with a junior doctor.


Wishing you the best as we know from personal experience how hard it is to fight family members corners for them. The last thing you want to do is  take the staff to task but sometimes it is needed. Regarding the nursing staff there is good, bad and indifferent as there is in any profession. I have sometimes in the past thought my dog is better treated at the vets.


 


Best Wishes


Ann

User
Posted 01 Jan 2019 at 19:24
The hospital should have a PALS (Patient Liaison Service) to whom you could address your concerns . I had to do this on a couple of occasions when I was getting nowhere and this changed very quickly after I involved them.
Barry
User
Posted 01 Jan 2019 at 19:29
I didn't need the answers Cam - I can read it in your previous posts. You asked for suggested questions - my list is simply a starting point for the discussions you should be having with the doctor. They told me my father-in-law wasn't in the end stages and he died a few hours later.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 01 Jan 2019 at 21:01

Cam


you are doing everything right, all you can do now is to talk to the doctor tomorrow (or your mother can) and find out what is going on. i know that medics have this ”angel” status but it simply isnt true for all of them and we are foolish to think so. i have lost trust in medics generally, the good ones are great but the bad ones have you at their mercy. 


good luck tomorrow.


devonmaid 

User
Posted 01 Jan 2019 at 22:09

Many thanks, Devonmaid.

User
Posted 03 Jan 2019 at 14:11
Hi everyone,

I contacted PALS. They were amazing. They visited the ward on the day I complained. Outlined my concerns and talked to staff. As a result, there is going to be a formal investigation into my father's treatment, specifically, the lack of oxygen when he was at a low level and delirious AND three days without a doctor. When I visite the ward yesterday everyone was looking switched on and when nurses came in they were alert and professional.

I also phoned the doctors on the ward: a very different experience. The junior doctor immediately tried to 'control' the situation. I replied by politely but firmly asking whether he was a specialist in oncology and asking basic medical questions - this threw him. I also called him by his first name which took him by surprise. Bottom line we have to book a meeting with a specialist oncologist. This is being done today.

There is something wrong with the main oncology ward in hospital my fathers at. Even several hand gel dispenses didn't have gel - in a hospital notorious for infections. The poor calibre of 'some' medical staff has been a real shock.

The PALS team also informed me he is now regarded as medically fit and will resume chemo in two weeks. His temperature is down to 36C.
User
Posted 03 Jan 2019 at 14:27
I'm afraid this is a common experience with the NHS and it's not all down to underfunding.
User
Posted 03 Jan 2019 at 18:01

So pleased for you that PALS has shaken them up a bit. Sounds like they really needed it. I do sometimes wonder why some people are in the medical profession. They should be weeded out.


Hopefully your Dad will keep improving so he can have his chemo.


Wishing you all the best for his future treatment.


Ann

User
Posted 03 Jan 2019 at 18:25

Cam


I recently got in touch with the PALs team regarding a catalogue of errors leading up to some bowel investigations, the PALs staff were superb and helpful and did some ass kicking. The investigation report that was carried out by the colonoscopy department was a joke. Amongst the eight apologies their report said you can only catch a hospital super if you stop in a ward overnight.


Hope you get a more satisfying result than I did.


Thanks Chris


 

Edited by member 03 Jan 2019 at 18:27  | Reason: Spelling

User
Posted 03 Jan 2019 at 18:43

A decent result Cam, I'm thinking of doing the same for a different reason. Hope dad continues to improve and the ward staff too!


devonmaid

User
Posted 03 Jan 2019 at 20:23
Hi everyone,

Thank you all for your help. You have been of great assistance with your wisdom and advice.
 
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