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Carole McGregor
Posts: 50
Joined: Thu Dec 13, 2012 9:19 pm

Re: I am furious.

Postby Carole McGregor » Fri Dec 06, 2013 9:54 pm

Oh Arlene - talk about déjà vu ! I went to our local hospital with my husband Clive for a blood transfusion. We arrived at 1pm. After a series of cock ups, still no blood at 9pm. I broke down in the ward. Like you I had been trying to hold it together for Clive as he really didn't like me making a fuss. Tears seem to work and the blood suddenly appeared from nowhere. He was given two units. We had been told he might need three. I spent the whole of the next day asking if he was to get another unit. No one seemed to know. When night shift staff appeared they told me quite dismissively that 'they don't do blood at night' (clearly not true given what had happened the previous night). Nurse then took Clive's blood pressure, disappeared briefly and returned with another unit of blood without explanation or apology. I know this wont help you but thought might want to know that I absolutely understand your frustration and how terrifying it is to have no confidence in the medical staff 'caring' for the person you love most in the world. Clive's treatment is now the subject of a formal complaint being made on my behalf by my Member of Scottish Parliament.

You will find the strength from somewhere. I just wish you didn't have to ! Let us know how it goes.

Love
Carole

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: I am furious.

Postby J_T » Fri Dec 06, 2013 10:14 pm

Its just appalling and it makes me cross! The lapses in proper care that we had were nothing compared to what has been said here.

You probably won't have the energy at the moment but make sure you diary all these things and when you're ready bang some tables.

So sorry you're both having to put up with such shoddy care :(

Julia x

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: I am furious.

Postby nikkis » Fri Dec 06, 2013 11:14 pm

Hi Arlene,
I am a nurse,now working in the community, and trust me when I say that people who make a fuss and complain get better care, so please don't think that by making a fuss Keith will suffer. It makes me so very angry,how dare they treat lovely people like you in this way. I am with Steve and would like to come over too! Failing that please consider asking to speak to the manager on call if you continue to have issues now, or maybe consider ringing and speaking to PALS or the hospital matron next week. It does help if you feel someone is listening,and can give you someone to contact if there are things you are not happy with in the future.With the current climate the people in charge are desperate to put things right in their hospitals, but they can't do that without specific examples of what is going wrong.

Really hope it all gets sorted out and you and Keith can get home soon,
Nikki

belgrade
Posts: 157
Joined: Fri Jul 05, 2013 11:53 pm

Re: I am furious.

Postby belgrade » Sat Dec 07, 2013 1:39 am

Hi Arlene,
My heart goes out to you both. If the condition isn't bad enough, the seemingly lack of understanding when treating terminally ill patients by hospital staff of all levels, is unbelievable. My husband developed an abcess at the site of his syringe driver, even though he had been telling staff for days that his arm was really painfull. When I made a song and dance over it I was told at 3.15pm on a friday that the surgical team had been paged to lance it. By 8 o'clock no-one had come and I complained again and was told the team would be there shortly, so I went home. I rang the hospital early the following morning and was told that the team had been too busy but had been paged again. I went straight to the hospital, had a major meltdown and a surgeon appeared at mid-day, with a promise of returning by 1.00pm. Needless to say, this didn't happen. I spoke to the locum consultant who said she had paged the team repeatedly and was concerned that, although a minor infection, she was worried that the infection might overwhelm Dave due to his weak physical state. I then insisted that a duty manager was called and was told that a different team had been called. However, 15 minutes later, the same surgeon returned and informed me that I needed to understand that patients must be prioritised and an abcess was quite low in his opinion. The abcess was lanced at 8.30pm on the saturday. I shan't go into the details of my response to him, but with the help of the Macmillan nurse (to whom I shall be eternally grateful)Dave was transferred to a palliative care unit where he recived wonderful care. However, this was shortlived as Dave died 6 days later. I, too have made a formal complaint to the health board. The care(or lack of it) that Dave received was appalling, but how much worse might it be for patients who don't have family to fight on their behalf.
Don't be afraid to make a fuss Arlene.
Take care,
Hilary

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: I am furious.

Postby cestrian » Sat Dec 07, 2013 8:58 am

In tears at this but unable to discern if they are tears of sorrow, rage or frustration. How is this happening in parts of the country while other regions are clearly excellent. There were my nurses on Wednesday full of apologies that my chemo was delayed whilst people in other areas are not being treated properly even in potentially critical situations and no one seems to care or take responsibility.

It just seems that where services are falling woefully short it is vital that strong people like Arlene are around to "kick ass" to ensure delivery.

If you are in an area of poor services keep on stirring up action and if you are getting great care count your blessings.

Love and Peace

Mike

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: I am furious.

Postby marie souter » Sun Dec 08, 2013 12:19 pm

Hi Arlene I just seen your thread here, I only found out my moms had definetly spread to her lungs (quite dramatically so as I seen the xrays) about 3 wks before she died .. mid october-ish .. she was diagnosed in april and they said they thought there 'might' be some posible signs in the lung but could not confirm ... I find out they did a further scan which confirmed what they suspected a week after diagnosis but did not tell any of us .. absolutely disgusting ...
sick of seeing this over and over again its horrendous x
love
Marie

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: I am furious.

Postby marie souter » Sun Dec 08, 2013 3:52 pm

my mothers bad level of care til she passed ..
2 years going to and from the hospital/doctors with her with the same problem ... misdiagnosis after misdiagnosis .. ibs...virus ... ibs again ... virus again... sit on the doctor (practically) SOMETHING IS WRONG WITH MY MOM!!!!!!! ... ok blood test .... few days later...bilumin up ... re-test ... WAY UP .... next morning .. eyes yellow .. hospital took 3 wks to get her actual scans done as they kept giving her medication they shouldn't for the particular scan she needed.
Had her stent put in 'finally' .... a coupla wks later she was back in hospital and they thought the stent was faulty. The consultant who came to see her mis-heard her and thought she said she didn't want a stent put back in???? Hello death sentence? IDIOT ... he got the sharp end of my tongue that day. My god that kind of mistake kills people...By the time she did get an offer of chemo .. it took '3' mths to get her first appointment .. even if it was palliative .. what the hell? By that time she was so fed up with throwing up she couldn't face it.
Constant cock ups on meds which I kept pointing out....changed because of me....
Found out the day she died that for the last 5 weeks of her life (she had 3 syringe drivers by that point) that one of the drugs should have not been in with anything else..unfortunately the drug involved was there to dry up secretions this made the drug less effective (could this have contributed to her eventual partial obstruction being a full obstruction? Possibly I think.)
As mom was at home I kept a lot of control of most of her situations but I was particularly stressed the last 5 hrs before she passed... as mom was lain flat when I was out the room by the nurses who came to change her syringe driver and put the extra one on due to RIDICULOUS drugs cock up mentioned previously (you never ever lie a patient with an obstruction flat for obvious reasons) my sis came running out as the nurses weren't listening to her ... I DEMANDED she be sat upright immediately, which they did as they knew better than to argue with me but it was too late she'd aspirated..I do tbh question whether they knew what they were doing there...whether they were hurrying things along in the only way they could, however although by this point my mom was comotose via medazelam it was extremely distressing for me and my sister to see this...I doubt I will know but I have my suspicsions ... there was so much MORE better overall care though than bad the major incompetence for me being the initial 2 years it took to diagnose ... totally unforgivable as she was stage 4 by the time they found it..I guess Mike is right it depends on where you are based ... I just hope my posters I am putting up locally will make a change to someone elses diagnosis .. I think scan waiting rooms in the hospitals are also a good place for these posters as in moms case the scans she had over the years were always looking in the wrong place .. trip to the hospitals coming soon I reckon ...
Hugz
Marie
xx

sooty
Posts: 31
Joined: Mon Feb 27, 2012 11:10 am

Re: I am furious.

Postby sooty » Sun Dec 08, 2013 6:58 pm

Hi, breaks my heart to read of your issues, I too went through similar when my husband was diagnosed, I found that writing things down as bullet points helped, these i handed to the consultant saying either read it or bin it but I feel better for handing you it, he not only read it but the hospital ward concerned telephoned me to clear up the problems. I know it is hard enough keeping sane at these times without added unneccassary pressures. Thinking of you take care dear, and hope things go well with your Keith ...mine was a Keith too xx

kwaitang
Posts: 56
Joined: Fri Jul 12, 2013 8:36 pm

Re: I am furious.

Postby kwaitang » Sun Dec 08, 2013 10:50 pm

Well Keith eventually got half the blood transfusion that evening at 9pm. They continued it the next day (Saturday). Following this his red cell count dropped and they said they may do another transfusion on Sunday. Sunday morning 05.25am they woke him up to take some blood for testing. 5.25am !!!!! Anyway at lunchtime they told him that his count had started to go up and he would be able to come home once his medication had arrived, again from another hospital. He had been taking water tablets while in hospital and lost 4 pounds in weight. He is still quite swollen but I can certainly see a difference. We got home at 4pm. I am still so down at the thought that I have no confidence in our NHS. I feel that they and I are totally useless.
I am also horrified to read so many similar stories.
How terrifying it is to be faced with a terminal illness and be afraid of the incompetence of the treatment at a time when troubles should be eased and not added to by the very people that should be there to help.
What a sad state of affairs.
My heart goes out to all the others that are just as bad off as we are.
I am left with a total feeling of hopelessness.
Love to you all.
Arlene.

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: I am furious.

Postby InfoForMum » Sun Dec 08, 2013 11:24 pm

Arlene I, like Mike, feel very emotional and desperate for both you and Keith.

It is, as you said, terrifying to face the prospect of being at the mercy of caregivers in who'm you have no confidence.

I abhor living in a world where he who shouts loudest wins, but, at least for the moment that seems to be the way to go. It may seem negative, but for those diligent, professional, patient focussed doctors and nurses I suspect it helps build the business case for getting the funding they need so they can weed out the bad apples and bad practices.

I posted on my thread about some horrible nursing care received by my mum when she was hospitalised for pancreatitis. A tiny taste of what you have been going through. I made a total pain in the arse of myself and ended up with 3 consultants and their secretaries involved. I got a number of snotty emails and calls, but after I chucked the word "negligence" into the mix it looked like competition to be the most efficient kicked in. Might look like a win, but the gnawing helplessness and fear for my Mum carried on right up to the point she was discharged.

Like Nikki, I recommend making a complaint. My experience of doing that formally wasn't for my Mum, it was after a horrific experience with the birth of my first daughter. It didn't produce the desired outcome at the time, but when I referred frequently and loudly to the formal compliant on-going in the run up to the birth of my second child it kept the obstetric staff VERY much on their toes and got me the care I wanted.

I think everyone one is concerned it will create bad feeling amongst staff you might have to rely on in future, but often, if the complaint is constructive, I think it has the opposite effect. I imagine good medical professionals hate having their ability to care limited by lack of staff and hate having their services degraded by bad staff. That was born out in my experience. The old school senior midwifery staff became a bit of a cheerleading squad cos I made the doctors back off far enough to let the good ones do the job how it should be done. Nikki can offer a far more experienced perspective on this with her background, but hope you don't mind me wading in.

You are probably too exhausted to do anything but sleep and care for Keith right now, so sorry to suggest doing more stuff. Will but out now and just wish you both an easier time from here on in.

Hugs

Sarah

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: I am furious.

Postby marie souter » Mon Dec 09, 2013 5:35 pm

Hi Arlene and your lovely Keith,

Please speak to your assigned macmillan nurse and tell him/her your concerns and fears. They are there to talk to not just to treat. I really re-gained my faith in the NHS when my mom had her first bad bout at home (she refused hospital). She literally kicked ass, she was the one who noticed the mixing of two drugs who should'nt have been mixed and the nurse who did it got a right tongue lashing.
My Macmillan nurse is the one who helped restore my faith, please don't despair and DO COMPLAIN ... so many people are afraid of raising their voice to be heard, but in my experience it makes people sit up and listen. They are so used to talking down to some people part of the problem I had faced initially was being seen as someone who had a voice and was not a hysterical relative but a concerned one. I felt as time went on I had the full respect of the NHS community I dealt with, to the point of any new doctors and nurses coming into our little circle thought I was from a medical background. You absolutely must question if you feel the need to and complain when it is appropriate..the way I see it ... if they don't know they're cocking up someone else is going to suffer at their hands, whether it's a training issue or an incompetence based issue requiring suspension and investigation ... these things 'must' be brought up ... mistakes cost suffering and cost lives ... I truly hope your experience from this point on is much better with regards to medical staff...

hugz n love
marie
xx

kwaitang
Posts: 56
Joined: Fri Jul 12, 2013 8:36 pm

Re: I am furious.

Postby kwaitang » Mon Dec 09, 2013 6:39 pm

Thank you for all the advise. I feel I am not the one to cpmplain as I tend to "lose it" when I get emotional or upset.
I will write everything down and ask my sister to come with me when the time is right. She is calm and can put things in a way that I cannot. This is why I have said nothing up to now as I think that my "bull in a china shop" approach, as my sister calls it, would only make things worse.
We haven't got a Macmillon nurse only the contact nurse at the hospital He has been the only comtinuity that we have had. He noticed Keith was swollen up straight away and sent him straight round to the hospital ward whereas we seem to see a different doctor at each check up and they do not know Keith.
I seem to use this forum to let out some of my rage, I hope no one minds.
Arlene.

Birchen
Posts: 77
Joined: Thu Sep 05, 2013 1:53 pm

Re: I am furious.

Postby Birchen » Mon Dec 09, 2013 6:58 pm

Hello Arlene
So very sorry that you are experiencing should bad care during this dreadful time. We to had bad care and made a formal complaint. The hospital concerned tried to deal with over the phone but we were having none of this. Went on to have a meeting with the PCT and consultant, the meeting was recorded and they then sent a cd for us. Hopefully the meeting to result in changes that they have promised. Came to late for us but might help others in the future to receive better care and consideration. We found actual nurses brilliant but they can only give the care they are allowed to and have to answer to the doctors, if one can be found.
Hope everything improves for you.
thinking of you Lyn x

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: I am furious.

Postby marie souter » Mon Dec 09, 2013 7:44 pm

Hi Arlene,

I found I had more control with 99.9% of moms time being spent there...so I guess I questioned a helluva a lot more than if she woulda bin in hospital..whats's that drug for? Why are you using it now? Is this reaction normal? Can't we change to something else? I've read we can? You get used to all the new drugs, question ALL the time ... I thin its a good idea that you do bring someone who isn't going to go straight for the jugular (my sis is the same) this is where docs/nurses are great at placating hysterical relatives however half the time they spend so much time calming people down, the relatives rarely find out anything useful, you do need a calm person and I think thats a brilliant idea..when you write your list of questions .. please remember .. no question no matter how insignificant you think it is will be a silly question INFACT it could make all the difference to assessing certain side effects of meds or of the cancer .. sometimes it can make that difference.. We only had our contact at the hospital initially as well...We didn't get our macmillan nurse for a while BUT our GP sorted it quicker for us as when I went to see him on my moms behalf .. he was appalled we hadn't seen one yet and had the number for the macmillan nurse for our area .... she rang us within a few days .. (also something you can do btw, get permission to see the doc on your keiths behalf if u need to? of course you need keiths permission to do this)

Hugz n love
Marie
xx

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: I am furious.

Postby marie souter » Mon Dec 09, 2013 7:45 pm

oooops ... I found I had more control with 99.9% of moms time being spent there (at home)
gave me more control of drugs etc x