A forum for people to support each other after the loss of a loved one

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PCUK Nurse Dianne
Posts: 271
Joined: Tue Aug 14, 2012 3:29 pm

Re: my dad

Postby PCUK Nurse Dianne » Fri Jun 27, 2014 2:18 pm

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
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: my dad

Postby Didge » Fri Jun 27, 2014 10:32 pm

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
Posts: 9
Joined: Wed Sep 18, 2013 9:19 pm

Re: my dad

Postby Elisejo5 » Fri Jul 10, 2015 6:46 pm

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
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: my dad

Postby Didge » Fri Jul 10, 2015 7:23 pm

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