I am furious.

[kwaitang]

My husband was diagnosed with non operable pancreatic cancer and has had 3 months of chemotherapy and trial medication.

Today he went for his 3 month scan.

While we were there we went to have a word with our case nurse about approaching the Heidelberg hospital about treatment there. He was very enthusiastic and I was dlighted about that.

He then started to go through our case notes and mentioned the size of the cancer on Keith's pancreas. He then told us the size of the 2 cancers on his liver ---WHAT !!! We did not know that he had cancer of the liver !! We had been told about the pancreas and lymph nodes but NOT the liver.

The nurse was devastated that we found out this way.

We just thanked him for his time and left the hospital.

What can you say.

Arlene.

[InfoForMum]

OMFG. Arlene, I'm so sorry. That beggars belief! How are you both coping?

Sarah

[kwaitang]

Oh Sarah. I really don't know. I am devastated yet again. I am so angry. I am sick of one disaster after another.

Since the end of May, as everyone on here will know, our life as we knew it ended.

We waited 3 months to start treatment. One delay after another.

Stent being fitted incorrctly.

Embolism found in Keith's lungs that took them 5 WEEKS to tell us and prescribe injections.

Recent visit to a stand in Doctor at the hospital reading our notes, who asked how long ago Keith had his heart attack and his last athsma attack - of which he never had either.

Same doctor told us to wait 10 minutes while he checked an xray but forgot about us and left us for nearly 3 hours. This following all the waits earlier in the day.

We seem to have spent weeks in waiting rooms - it ia as if - you've nothing better to do now that your life is over - there is no sense of urgency.

I am sick of fighting to get an appointment at our Doctors.

District nurse didn't bother turning up to show Keith how to inject himself.

We should be able to have confidence and be made to feel better but it is just not happening.

I am sick of fighting.

We have had some nice staff when you do eventually get seen but it's just a shame that our last memories will be the constant waiting.

I am tired.

I am sorry, I don't know what else to do but moan.

Hopefully in a day or two I may see a glimmer of hope again.

Arlene.

[nikkis]

Arlene,

I don't know what to say, I don't know which emotion I feel the most - sadness or anger on your behalf, so God only know how you and Keith feel.

We have just promised ourselves that we will write over the weekend to complain about the misinformation we received at the beginning that lead to Paul's surgery taking place months after it should have done. Seriously think about talking to the PALS service at your hospital. Trying to make sure that the same doesn't happen to anyone else is our motivation in complaining, and in your case people shouldn't get away with this, they are meant to care.

Paul, who is the least aggressive person I know wants to hit someone for you, difficult when he can't stand without being wobbly and has no muscle left, but he would give it a go!

Arlene, you sound such a positive person, I am sure your glimmer will be back in a day or two,

Nikki

[J_T]

Bloody hell Arlene! What the heck is going on with your hospital? As if you don't have enough to contend with! Apart from all the cock ups, sitting in waiting rooms for hours when you feel dreadful is not good either.

As Nikki says you need to contact PALS but I can imagine how sapped of energy you must feel. I have to, at some point, compose a letter to PALS/Chief Exec of our hospital but at the moment I can't muster the energy.

I feel quite disgusted with the district nurse, ours were quite wonderful so you assume its the same everywhere.

I really feel for you. Its inexcusable.

Much love to you both.

Julia x

[Thriae]

Your post is my pivotal moment.

I've found aspects of dad's care superb - better than I could ever have imagined. However, much of what you've said rings true.

Let me list some of the things I can recall just now:

Failure to investigate thoroughly causes of high blood pressure and indigestion (GP)

Failure to notify on call doctor of arrival by ambulance (hospital)

Failure to initiate standard protocols - stockings for DVT, saline drip, basic observations for in excess of 2 hours upon admission to ward (hospital)

Accidental conveying of diagnosis of pulmonary emboli during bedside peer discussion (hospital)

Administering of incorrect drug dosage (hospital)

Failure to discuss and/or prescribe appropriate medication such as anti emetic, laxative at the same time as prescription of opiates (GP)

Stating that sedatives given when they in fact were not (hospital)

Blood present in patient surroundings (someone else's) (hospital)

Frequent consultations without full awareness of medical facts, i.e. Unaware of DVT, PE, etc. when discussing cancer care

That's an initial summary.

We were fortunate to receive chemotherapy well within standard desired time frames but other aspects of care have been very lacking.

I'd like to begin a project collating patient experience and submit this alongside a petition or open letter to parliament but before I proceed I wonder if I could tag on this thread to get a feel for the relevance of doing so.

No political bias, not wishing to derail Arlene's thread - rather more, inspired into action by it... Your thoughts?

[Cathy]

Hi Arlene

I'm sorry you have had such a frustrating experience.

My advice would be to bide your time and make a complaint when you feel able to. I find a diary a great help (I'm not thinking of the NHS necessarily) just to keep a check of dates and who you spoke to (its very good evidence) and when you feel the time is right, make a complaint, via PALs, your MP, local paper or whoever. Now might not feel like the right time, just when you feel ready and able and want to.

Good luck!

Cathy xx

[InfoForMum]

Arlene - I'm going to wade in in response to Aimee's post here, but in spirit this is about you m'dear. The fact that an obviously resilient, postive woman has been so ground down by a completely avoidable breach of not just professionalism, but common decency has my blood boiling. I would love to dedicate some energy to helping create a weight of patient experience that can be categorised and packaged to drive home the true weight and cost of stress caused to people who shouldn't have to withstand it as well as the PC fight.

Aimee, I, as you might guess, would support that. I suggest you discuss with the charity as improving patient experience is one of the major strands of their call to action (see the briefing paper "Pancreatic Cancer - A cancer of unmet need" written for parliamentary consultation here on the site). http://www.pancreaticcancer.org.uk/media/173981/research_policy_briefing_final.pdf

In patient care terms focussing in particular on:

Poor diagnostic tools, training, experience and effort

The nihilistic or defeatist attitude of many care givers

Poor and inconsistent patient support in stark contrast to the support and continuity of contact people with more treatable cancers experience (one poster here had breast cancer first and said she felt abandonned with PC compared to proactive support offered to her before).

Sarah

XXX

[kwaitang]

Thank you folks for your responses - I will read through them all PROPERLY when I have calmed down.

Our next installment - Keith has had a lot of terrible chest pain which is getting worse to the point where it was 4 times that it woke him last night.

We have asked the hospital about it and they could see no cause ( Keith had an ECG) and said they didn't think it was the embolism causing the pain and breathlessness.

We went to see our GP this morning and he said the same re: the embolism. BUT he did think that Keith may have angina. He has booked treadmill tests to confirm this although that will take at least 2 weeks. Meanwhile he has given him beta blockers, a spray and tablets to reduce cholestoral - in case.

We asked him to check records and tell us what sort of cancer he had been told Keith has.

He said localised pancreatic cancer and cells in his lymph nodes - NO RECORD OF LIVER CANCER.

We have tried to contact the hospital with no success yet.

Will update when and if we find out what is going on.

After a dreadful night I feel I just need some answers.

Arlene.

[LindaH]

And so it goes on all over the country.

Just reading all your posts which seem to go from mild help with various aspects of PC to down right neglect and floating through the system as though we have all the time in the world. It's downright ridiculous.

My own experiences have really called into question the nursing care, or should I say lack of nursing care, because the nurse who was assigned to me way back last December I can just put up two fingers as to how many times I've actually spoken to her face to face....yep twice and once just to tell me she was busy so couldn't stop.

I'm waiting - and have been for a couple of months - for a nerve block injection as the tumour is pressing on the Celiac nerve in my back, but that's just it.....I'm waiting. A couple of weeks ago I had a melt down and made a phone call to the secretary of the Dr who is 'going' to perform the injection, she has been trying to speak to the Dr since I had my melt down on the phone and what is the outcome? I'm still waiting.

A relative of mine who lives in Suffolk rang me and gave me the phone number of a Community Liaison Nurse at my hospital - which is over 400 miles away from Suffolk - so I did phone her and though she hasn't been able to really push things forward for me, she has kicked down a couple of doors and begged the question "Why is this lady still in pain after two months of reporting it and what is being done to help this lady with her pain?" So, it takes one of my relatives 400 miles away from where I live to ask these questions.....unbelievable.

I cannot call into question my Oncologist, he is doing the absolute best he can for me and I know he is extremely frustrated by what is happening to me, or rather what is not happening to me, but the one person who is frustrated the most; is me. I feel like a number on a conveyor belt sat in Argos waiting for my number to be called. I just hope and pray my number won't be up before it's too late.

If anyone is starting a list of 'complaints' I will gladly add mine.

Linda

[cestrian]

Arlene

Probably no comfort whatsoever but when my PC was diagnosed I was told of lesions in lung and liver. When I queried this my specialist explained that this was NOT Lung cancer OR Liver cancer but metastatic cancer of the Pancreas that has spread to these other organs. Of course I am not medically qualified to confirm this is necessarily always the case but this link may help:

http://www.cancer.gov/cancertopics/factsheet/Sites-Types/metastatic

I do hope things improve for you quickly and it is no help at all seeing different people at every turn.

Best wishes to everyone on here fighting for better treatment for their loved ones and all power to your efforts.

Love and Peace

Mike

[J_T]

Linda, it's just terrible that you are still waiting.

There were some comments in your post almost identical to what we dealt with. It took Kate to ring Macmillan in XX (I live in Cumbria), Macmillan in turn found out who our 'specialist nurse' was, we had no clue till then. I rang her twice but she was no help whatsoever. She had no relevant information to give me, so we just didn't bother trying to speak to her again. When we thought Ray was going to need another stent in August, the oncs told us they would get this nurse to refer him to XX where he had his first stent done, after the initial ERCP at XX failed. I rang her couple of days after Ray's discharge to check she'd done it. She told me it wasn't XX but XX and yes she had. I queried the XX bit but she was adamant. I then rang endoscopy to be told the referral hadn't reached them yet but it could take 2 days if it was internal (wtaf) but she would chase it up.

As it happened Ray recovered from his infection and didn't need the stent - good job! About 3 weeks later I received a letter from Endoscopy, not WITH an appointment but to MAKE one. The letter was dated about 2+ weeks previously, I phoned and ranted, well it made me feel better. Not only that, I came across Ray's discharge letter which clearly states his stent referral was to XX.

It's just shocking and just makes you wonder what other cock ups are happening. We are in the technological age, why referrals and messages take so long is just beyond me.

Edited November 16, 2013 by J_T

[cestrian]

FFS it's a good job that one of the benefits I've experienced is that my Blood pressure needed medication is now down to low/normal without any tablets at all as otherwise I would have blown a gasket reading this thread.

Politicians, bureaucrats, NHS managers - who is actually ever going to grasp the nettle and actually get something done about this scandalous neglect of cancer sufferers in some parts of the country. For crying out loud there must be enough examples of good if not excellent practice for them to try to copy. They don't have to 're-invent the wheel just get off their butts and make things happen!!

Even in the best run clinics the odd error will creep in as that is human frailty but the unforgivable theme seems to be endemic failure to care about us the patients. Thank God for the XX Cancer Centre, a beacon of care, compassion and excellence. Why are there not more such centres run on the same lines by totally dedicated professionals and liaising very successfully with local partners.

Love and Peace

Mike

[kwaitang]

Well I calmed down - for a while. Till today. Keith is in hospital again. He has been waiting for a blood transfusion - since lunchtime, it is now 19.45. The blood is apparently coming from another hospital in the same city. Nearly 8 hours !! The nurses have just been to tell him that if it arrives now they can just do half of the transfusion as the night shift cannot cope with it. If it doesn't arrive very shortly he will have to wait till tomorrow. Has no one in the NHS got any sense of urgency or even a slight rush would help. Keith has terminal cancer, do they think he now has nothing better to do than wait !!! The attitude seems to be "oh your dying anyway so you might as well spend your last bit of tiome here". We never see the same doctor twice. One even asked him about his heart attack, which he has never had. Last week a nurse left him halfway through removing a canula so she could go chat and mess about with a new door they've had fitted. I have no confidence in them. I am crying with frustration and anger. I don't want to cause any trouble for Keith as he just seems to accept everything. But I am nearing breaking point because of the attitude of the NHS.

Arlene.

[Slewis7313]

Arlene, my family will confirm that I too am the most mild-mannered of people and never complain when having to walt for treatment as I can see that there is a team of healthcare professionals doing everything they can to improve my lot. However, if I had been treated in the horrendous manner that you and Keith have been, I would have made an exception and blown my top before now. I am so sorry that this horrible situation is being made more difficult by those who are supposed to caring for you (both). This is so alien to my own experience over the last 12 months. I wish I could come over (along with a few others from this forum) and knock some heads together. I know you need to focus on Keith for now, but someone needs to be made accountable for what seems to be (at best) nothing short of negligence.

I certainly hope the rest of your weekend pans out better than it has started!

Good luck

Steve

X

[Carole McGregor]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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