my dad

[Elisejo5]

hi all im new to this and just wanted to talk to someone going through similar situation, my dad was taking into hospital at the end of july as he felt really unwell vomitting severe weight loss not eating where he was sent home after 2 days saying it was constipation 2 days later he was readmitted and sent home again with laxatives the following day he was rushed back in after collapsing at home and it was after this admission they decided they were gonna do a CT scan on him on the wednesday on the friday evening after visiting at 8pm i went home and he phoned me about 45 mins later to say that the doctor had been up to see him and told him that he had a tumour on his liver i was furious that they had waited till we had gone home and went up and told him while he was alone, my dad said the doctor said if u come in at 10am on the saturday morning the doctor would come and speak to us so we went up and waited and waited and waited and he didnt turn up one of the staff paged him and he apologised and said he would be there the following day so on the sunday we returned to the hospital which turned into another day of waiting and not turning up, so on the monday during visiting the nurse paged him and said the family had been waiting since saturday for someone to come and speak to them so he said he would be up by 5pm to speak with us and as expected 5pm came and went with no sign so at 8pm as we were due to leave i asked who i complained to and was given a form within 10 mins of arriving home the doctor phoned me and said we dont normally do it y phone but i believe u have been wanting to talk to me i went mad saying u told my dad while he was alone on friday night telling him he had a tumour and that was it no other information was given so he said on wednesday all the team will be getting together and discussing ur dad and give u proper feedback! so on the wednesday the 14th of august evening after not turning up again the staff paged yet again and a member of there staff turned up eventually and said that he had cancer of the liver that had started in the pancreas and there was no treatment what so ever as he was too weak for chemo my world came crashing down there and then it was then decided by them that we could have open visiting when ever we wanted as there was a hell of a lot of neglect inbetween all this and they knew it. over the next week or so he started going more and more yellow and hadnt ate a single thing in 6 weeks and they said they couldnt tube feed him as his bowel was blocked then on the 27th august exactly 13 days after his diagnosis i recieved the dreaded phone call at 9am to get to the hospital as soon as we got there the nurse said im really sorry but he seems to of picked up now he then went on to pass away at 8-15pm that night still cant get my head round it all so surreal

[Cathy]

Hi Elisejo

You poor thing, you must feel absolutely devastated and numb - it was all so quick!!

I'm tempted to advise you, while things are still fresh in your mind, to put what you have written below into a list of dates (earliest first) showing what happened when as it sounds like your family was very poorly treated - all that ridiculous waiting around you had waiting to see the doctor. You could use this if you wanted to make a formal complaint at some point.

Sadly misdiagnosis in pancreatic cancer isn't uncommon but I'm sorry to see that he had such a torid time before being diagnosed. Why constipation?? (I'm no medical expert however).

I also wonder why your Dad wasn't moved into a hospice?

The support nurses on this site are great if you wanted to talk to them? They're full of advice. You can email them on support@pancreaticcancer.org.uk

All the very best to you and to your family Elisejo. My thoughts are with you.

Cathy xx

[Elisejo5]

thanks for ur reply cathy i have said i definitely want to make a complaint about theres alot more that i didnt put in my original post didnt want to make it seem so long winded but i have now also read online that if u are diagnosed with diabetes later on in life then it can be a warning sign for the onset of pancreatic cancer, his own gp didnt even seem concerned about his weight loss when he went he was a biggish guy that loved his food and the doctor knew this and treated him for a water infection really dont understand it all, there was talk of a hospice on the tuesday and said that the pallative care team would come and speak to us about it on the wednesday and after we got a call up to the hospital and told that things were slowly shutting down and his breathing had changed and sugar levels dropping and that he would pass at some point that day the pallative care team came up and said at this moment hes too weak to go in a hospice but he may do in a few days and i screamed at them why are they giving us false hope when we have been told that today he will go there have been so many mistakes its unreal

[LindaH]

Hi Elisejo,

I am so sorry to learn about your dad's treatment in hospital,it is horrendous to read things like this, but it seems to be all to common.

I was admitted into hospital December 2012 and given the news that I had pancreatic cancer, I too was alone when the news was given to me. It was the following day the consultant eventually came to see me when my husband was with me, but of course when I was told the news the night before my head was spinning, I cried all night, it was one of the worst nights of my life.

I was also told nothing could be done for me and was given until Christmas. I laughed, it was stupid. What the he'll was this doctor saying? He was telling me I was going to die. Thank God one of his assistants said to me "You're going to have Chemotherapy are you not?" I was told by the doctor I could have Chemotherapy if I thought it was worth it.... unbelievable of course it was worth it.

It was March before I actually started Chemo, more time lost.

I really feel for you and really nothing I can say will help, but I wish you well and ask you to recall all the good times with your dad. Anger is a wasted emotion.

Linda x

[Elisejo5]

so sorry to hear that linda i ant imagine how u are feeling its such a cruel cruel thing xx i hate the fact that they tell someone on there own especially when there was visitors with him and they waited till we went to tell him it must be the hardest thing ever to be told alone as when they tell u they walk away and ur left there to think about it and let it keep going over and over in ur mind he practically didnt speak 2 words for 3 days after this i know they have to be told but alone is so wrong. thanks for the assistant that mentioned chemo to u its like they dont have a care and its just normal to go and crush someones world with no emotions nothing involved and thats shocking that it took 3 month for the chemo to start on the wednesday that it was actally confirmed to us they said he had a kidney stone blocking one of his pipes and thats why he couldnt wee and she said once we get rid of this which we are making priority and will be gone by friday then he will feel strong enough to eat again but at this moment hes far too weak for chemo so on the friday when i went up i said have they done anything to get the stone out and he said no and that was it so on the tuesday as it was august bank holiday on the monday the lady that broke it to us that it was cancer phoned and said i have some good news and some bad she said the good news was this morning we took him for an xray to see exactly where the stone was and its passed on its own over weekend and the bad news is his bowel is now blocked again and hes not strong enough to have the operation but its the only option and there a 95% death rate on it and he had been told this yet again on his own i went straight up to the hospital and luckily by miracle he had passed a small bit into his cholostomy bag which he had done 3 years previous but when i was sorting through his hospital bags last night cos i just couldnt bring myself to do it the consent form was in there that they had got him to sign saying only 5% survival rate it was heartbreaking just so mad at them

[Cathy]

Hi Elisejo

it is such a heart breaking story and you really should have had more support and I do hope you are having support now.

I wonder.. if it was something that you felt might be helpful, if your local Macmillans or community palliative care team (or GP) could organise something for you. Maybe ring them and have a chat and see what they can offer? I'm thinking of something like counselling. It might not suit everyone but you might find it helpful talking things through?

But, certainly go ahead with your complaint. You need some answers and it will hopefully avoid other people having to go through the same thing.

Cathy xx

[Elisejo5]

the hospital said as i was nxt of kin and there constantly i would hear something from macmillans but upto now not heard a thing from anyone i dont even know where to start with a complaint or anything kinda lost at the moment i know what i need to do but not how to do it x

[Cathy]

Hi Elisejo

I think you can actually self refer to Macmillans - or your GP could. You could just google your area and Macmillans to get your local team and give them a ring for a chat?

Maybe ring support on this site first. You will get superb advice from them. They're great!! 020 3535 7099 or support@pancreaticcancer.org.uk.

Cathy xx

[Elisejo5]

Thanks Cathy I emailed them yesterday just awaiting a reply x

[nikkis]

Hi Elisejo,

So sorry to hear of the terrible time you have had. If you would like to make a complaint about how and your dad and family were treated, but don't know how to go about it, the hospital should have a PALS service (Patient Advice and Liaison Service) who's job it is to advise you in doing this. There's no rush though, but it might help you in the long term,

Very best wishes,

Nikki

[InfoForMum]

How heartbreaking Elise, so, so sorry this happened to you and your family.

All I can offer is a practical suggestion to partner the excellent advice offered by others here. When my Dad rapidly declined and passed away in hospital with confusing, non-specific diagnoses, we found the whole thing such a blur that we couldn't piece everything together afterwards. Those of us up to it put down our own experience in order in as much detail as we could remember, but we also, pretty quickly kicked off a freedom of information request for Dad's full notes from the local PCT.

Your PALS team will be able to help with that I suspect. It may not be something you want to do now, but if you're anything like us you are likely to want to go over this many times in the next few months to either make the complaint or just find a way for you and the family to find peace with this in future.

Take care,

Sarah

[Elisejo5]

thanks for ur reply i emailed the address cathy gave me and they said i should i definitely get in touch with pals and take it from there so ive sent them an email to try and get an appointment with them so hopefully get things moving soon xx

[Elisejo5]

hi

not been back to this forum since this original post, will be the first year anniversary in August for my dad losing his battle to this horrible disease its just flew by and still doesnt feel like he's gone although im missing him like mad still got my complaint being looked into but as usual they are all covering each other backs and taking no blame dont think any of them think how it would all effect them if it was on there own the solicitor also put me on guard of them 'doctoring' the notes or some of them just mysteriously going missing feels like your hitting head against brick wall all the time had my little rant now thanks for reading

elise

[Didge]

Hi Elise. Sorry you are not getting anywhere fast. I am assuming you are using a specialist firm of solicitors? If not AvMA has a website and free helpline and advice. I used them years ago but was not able to pursue my claim but was able to understand why. Likewise, many people on here have tried to take action because of the poor diagnosis of PC but have been told that PC is so difficult to diagnose that legal action is not easy (or nigh impossible). I do hope you can get some answers in whatever way is possible.

Didge x

[Elisejo5]

hiya didge

thanks for ur reply yeah ive heard that with the getting hold of them fast thing and nothing could be done either way its more the care they gave him the way he was treated etc one thing always plays on my mind that was said to him day before he died one of the staff said go down there and get a wash dont lie stinking in that bed all day ur not dead yet they all walk round thinking it will never happen to there family or even themselves

[PCUK Nurse Dianne]

Hi Elise,

Thanks for coming back to the forum and I am sorry to hear that you have not heard anything about the 'letter of concern'. I wonder if you had contacted your PALS office at the hospital. I am sure there should be some acknowledgement of your concerns in the first instance, ie a letter to say that your letter has been received and that they are looking into the circumstances. I wonder if you have had anything like this yet? It may be worth you contacting the PALS office, or even further sending a letter to the CEO of the hospital explaining that you have not had the concerns addressed. In theory, the notes should not be able to be 'doctored' as they are an official record and you have the right to be able to request to see the notes. If there is evidence that these have been changed or pages removed this will only add to the concerns for the trust involved.

Please feel free to be in touch if you wish to talk about this further and we can perhaps help you in finding out exactly what is happening (Phone: 020 3535 7099) or you can email if you wish to: (support@pancreaticcancer.org.uk). I hope that is helpful Elise, don't hesitate if you wish to have a chat about things.

Regards,

Dianne

Support Team

[Didge]

Hi Elise

AvMA also help in getting answers to your questions. If you have a look at their 'case studies' some are about concerns about care so it might be worth a call to their helpline. Certainly if PALS are not getting anywhere.

[Elisejo5]

Hi all not been on for some time as I have been fighting with the hospital for answers, managed to get most which is not what I wanted to hear but really need some closure. only im not getting any as I got most my answers verbally back in February in a local resolution meeting which I am still waiting for in writing along with alot they couldn't answer as members of staff involved had 'disappeared' but the answers they gave were when they first said he had pancreatic cancer we should of been told there and then that there was absolutely nothing that could be done for him and that open visiting should of been given there and then and they admitted we basically had the last few weeks of his life taken away from us, not the 2 seperate hours each day for the few weeks he was in hospital also there should never of been any mention or promise of chemo as that was never going to happen either as they found it at the end stage but the person who said this is one of them that vanished. one of the questions my advocate also put to them was how come he was diagnosed with pancreatic cancer but on the death certificate it is saying he died of liver cancer which they also admitted that they dont think it was actual cancer that he died of as he had pneumonia and the xray results were never looked at and he was actually drowning in fluid which should of been drained immediately as this caused him to choke on it which they are saying they are 95% certain that ended his life!! they had him down at 12 stone on his med chart which was another question as he has never ever been 12 stone always been more 16 stone and they admitted they guessed what he weighed which was effecting some of the medication given to him theres a lot lot more but as im remembering it all its just getting me angry and upset so il leave it here for now and write the rest when i feel upto it. not quite sure if any of it even makes sense

Elise

[Didge]

Hi Elise, this must be so difficult for you to hear. I know that cancer patients often die of a complication, pneumonia for example is quite common and opiates which are often needed for pain control can suppress breathing which can lead to pneumonia. Whatever you find out, remember that he is out of pain now. I hope you get some apologies for the care issues you have discovered and that you can get some closure in having your questions answered. Didge x