delays + mix ups, how often have you experienced them?

Public Archive
1

I’m looking for similar experiences both in the private and NHS, primary or secondary. I would like to know how often this happens and what are you suggestions of improvements or even how they might be avoided all together. Maybe a place to rant and show your frustration, too!

Was dx’ed in June, 09 and since then have experiences lots:

  1. when switched from NHS to private after initial dx, blood test result got lost, so it was retaken.
  2. insurance company wasn’t informed about drugs changed, so it was delayed once and not granted another time.
  3. a few times (twice as far as I can remember), 1 week before scheduled scan, when I phoned the oncologist / hospital, the app for the scan wasn’t even booked.
  4. a few times (3 times as far as I can remember), I got a last min phone call saying not to come in because the drugs haven’t arrived. Or even worse, had a waste journey.

I’m sure the list will go on as I have secondaries and some sort of treatment will continue for the rest of my life. Am I just unlucky to experience all that or is this just a tip of the iceberg? Welcome your experiences (no names please, don’t want to get into trouble!).

Not wise enough to offer any improvement suggestions.

Open to you all now, everyone is welcome to continue…

xxx

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Hi, well I was treated by the NHS the whole way through treatment and whilst on occasion I have had to wait as the clinic has overrun, I have never had anything cancelled or waited for drugs/prescriptions etc in fact I would go so far as to say they were wonderful.

Nicky

3

I agree i have had NHS care right through and care and support has been exceptional ( the hospital im being treated in is a centre of excellence for breast care and it definately shows ) I cant praise them enough and everything they said they would do has been on schedule and never cancelled drugs were always there ready and if ive called BC team and left a message on answer machine she has always got back to me the same day.( Private care doesnt necessarily mean better care).

4

Pleased juliebtaurus and molsid that you have both had such excellent care.

I would describe my own NHS treatment as ‘adequate’ - far too much waiting in clinics and for chemo and a disappointing attitude from too many of the nurses I’m afraid. The large provincial hospital where I was treated was always SO busy - one was often ignored for excessively long periods - or made to feel that everything would run so much better if it wasn’t for the patients!

I would certainly have preferred to have had the privacy and individual care that I have seen friends experience in the private sector - and not to have felt that I was ‘just’ another woman with BC

Having said that, Miju it really does sound as if you have had a v. poor level of service generally .
Have you complained?!

5

I think one of my greatest frustrations with the NHS hospital I attend (one of the best in the country) has been with the pharmacy. There always seems to be the most awful delay from the time you hand in a prescription till you get the drugs. 45mins to an hour is not uncommon.

I do think we have to be as aware as we possibly can in the circumstances. Always make sure you are being given the correct drugs! On one occasion my drug bag was being hung on the ‘pole’ and as the nurse did this she said - that’s your pamidronate … I came to with a jolt - I don’t have pamidronate!! On another occasion when herceptin was being given over 90mins the nurse put up the bag with it in and set the time etc. and walked off saying back in 15 mins!!! and then proceeded to argue with me that it was the norm. I’m afraid I asked her to go and get the senior nurse.

That all sounds dreadful and these are incidents over a period of 20years! but all I want to say is that we really do need to pay attention - it is our bodies they are putting this stuff into.

I still think the treatment we get is outstanding. Yesterday at the hospital the nurses were going round to make sure everyone was going to be able to get home alright - the snow was particularly bad in our area.

Dawn
xx

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M1yu. I’m totally with you on the delays and mix-ups front. My treatment so far, with the exception of the bit involving a wonderful oncoplastic breast surgeon, would make excellent fodder for a sitcom. I really couldn’t even begin to write it all down. :-(.

7

Hi M1yu and all,

Where to start? Lots of things have not gone smoothly for me since dx,
some of which is nobody’s fault (allergic reaction, for example) but
some things have made me really angry.

* At one-stop breast clinic, where leaflet says mammo/ultra/bio/results all in one day,
it took me 2 weeks and 3 visits to get what the leaflet said would happen in ONE VISIT.
(On subsequent visits I could observe that for some women the system did work.)

* Local anesthetic did not work for my core biopsies (3 were taken, why I did not scream STOP after first one, I can’t rightly say.) It was excruciating.

* My diagnosis was not given to me in clear English…even my husband was amazed at the delivery. It was all surgeon-speak, as if chatting to another surgeon at a conference. All the while, bc nurse sat there looked incredibly bored.

* No pre-op assessment booked…if I hadn’t chased it up, my surgery would have had to be delayed.

* Surgery delayed by 5 hours.

* I went into anaphylactic shock in the recovery room due to allergic reaction to SNB blue dye,
my blood pressure went down to 60/30. Watched 2 anesthetists arguing over my head about treatment.

* I went to first onco appt expecting to have a discussion about my treatment. There was none. The entire purpose of the appt seemed to be for me to sign consent forms.

Thanks for listening, guys, I’m sure I’ll think of some other mix-ups.
Xwelcomex, do try to tell us *some* of your stories. It’s quite
therapeutic to write it down!

All the best,
Anna in Bristol

8

I have usually had positive experiences, but not with regard to waiting times. today was finally seen for a consultation, after waiting on an extremely hard chair for 3 1/2 hours! My husband should have been working so will now have to stay at work longer and come home much later, which will disrupt our evening. If the hospital know that there are likely to be delays (there always are in this particular clinic!)why don’t they phone patients and ask them to come in later, Ok it wouldn’t suit everyone, but would help lots of people. The hospital has many TVs in public areas but not in this particular clinic (I have only been 3 times to the Wednesday clinic, one wait was 3 hours and the previous was 2, so Todays has topped even these!) If they provide free wi-fi many people can bring work with them which eases the stress levels.

and they didn’t have my notes!!! fortunately I can remember all of the necessary information!

9

Hi, Im new to this site altho I was diagnosed with bc in 2006. I can relate to mix ups and delays. I think my longest wait was 2.5 hrs and I have been forgotten about. Most of the staff are lovely but I am shocked at how poor the system can be especially when I have had concerns, the 2 wk wait is unbearable! Its nice to talk via this forum to others who completely understand. My worst experience has been with my oncologist as his bed side mannor is something else! He as good as told me I had secondary ovarian cancer and there was nothing more he could do, at the time my daughter was 2 yrs old and when I began to cry he said “oh dont cry” and gave me a tissue! As it happened I did not have ovarian cancer but I had to wait months until the chemo was over to ascertain whether it was a cyst or not. Recently when discussing the option of more children he told me to consider whether or not I would be there to raise another one! I feel like popping in with my diary and scheduling my funeral with him. However I feel he has been in the job too long and intend never to talk with him again. Thankfully my consultant I see for check ups is positive and very nice.
Hannah x

10

My date and time for having PICC put in came through for exactly same date and time as my first chemo is scheduled for. Letter arrived saturday, of course, so couldn’t sort out until Monday, unbelievably frustrating, tho tiny in the scale of things. Rang Monday, and got phoned back two hours later to say PICC insertion could stay at 9am because chemo ward had said they wouldn’t be ready for me until 2pm… but my appointment was made for 9am and no one had told ME any different! Glad I found out in advance, as nerves before first chemo would not be good, multiplied hugely by having to hang around for FIVE HOURS before first dose was actually given!!

11

Well, what can I say? Three weeks wait for the results of the two core biopsies and to add insult to injury, then a wait of 1.5 hours in the waiting room when I got to the hospital for the appt.

Goal posts moved. Registrar gives me the diagnosis of DCIS and recommends a WLE. Two weeks later, seen by Consultant who suggested that due to the close proximity of the DCIS to the nipple, he recommended WLE and removal of nipple.

A missed diagnosis of Paget’s disease (with already diagnosed DCIS) until I told the Consultant that I thought the appearance of the nipple suggested the disease. This was confirmed after surgery.

Told that I would see the Consultant 6 months post-op. It was actually 8 months and not without the first appt being delayed by a week, resulting in one letter to notify me of the appt, a second letter to change it and a third letter to confirm the changed appt.

Also told that there may be a ‘bit of a wait’ for the results of the first mammogram but I can contact any of the team whilst waiting! It’s not my job as a patient to chase up my results but it IS their job to inform me of the results and in a timely fashion.

They tell me that the Breast Unit has a good reputation but I have my doubts…

12

I have nothing but good things to say about most, though not all, of the nurses and the doctors that have treated me but I too have had my fair share of delays and mix ups. The chemo suite where I had my treatment was a disaster zone. The nurses were run off their feet and they often had to stay on for hours after their official shift was over and rarely got a proper break. It’s no wonder mistakes were made.

Anyway, my list includes:-

  1. On my first visit to the GP I was sent away with anti-biotics, despite the fact I was a former BC patient presenting with a lump in the chest wall. This delay cost me two weeks, probably not a significant amount of time in terms of the outcome, but a delay none the less.

  2. On my second visit to the GP, my doctor was still sure it wasn’t cancer and decided I needed a scan. Luckily for me, somewhere along the line, someone at the hospital picked up my file and asked why I hadn’t been referred to the breast clinic as was to be expected given my history, so I was seen there instead. Since there was a six week delay for the ultrasound scan, I’ll be forever grateful to whoever it was that spotted the mistake.

  3. Moving on to the chemo suite, it’s the mix ups with drugs and how they are taken that seems to be the common theme here. I don’t take oral meds like anti-sickness drugs and pain killers because I have a liver function problem which effects the rate at which they are absorbed. The oncologist therefore prescribed all my meds, including anti sickness drugs, in intravenous or subcutaneous form. However, every single time I sat in the chemo chair a nurse would appear and hand me a cup with pills in. I’d politely explain that I didn’t take oral meds. On one occasion, the nurse was quite rude insisting that everyone else takes them so what made me think I was so special. Usually, they’d just stare blankly at me, go check my notes then come back and say, ‘oh yes, we’ll have to send to the pharmacy for the injection form.’ At which point my heart would sink knowing that I’d have a 45 minute delay before the drugs would appear. This happening once would have been understandable but it was every single visit and it does show that you really have to be vigilant. They could have been giving me something that I was allergic to or would be dangerous for me to take yet the obviously hadn’t even looked at my notes before giving them to me.

  4. On one occasion, when they had the right drugs, they failed to secure a syringe driver to administer them. I waited over an hour for them to try and find one, but in the end, they couldn’t. I had to be sent home, arrange to collect one from another local hospital and bring it with me the next day for treatment. Bare in mind, a syringe driver is a very ordinary, every day bit of equipment. If you’ve ever had morphine pump after an operation, you’ll know what one looks like. I found it absolutely incredible that a large general hospital wasn’t able to track down one at short notice but that’s what happened.

  5. Going back to the first time I was diagnosed with BC, eight years previous to this diagnosis, my local hospital only had a clinic once a week, on a Monday. I went one Monday for the consult, had mamo, scan and biopsy and was told to come back for the next clinic for the results. Except the following Monday was a bank holiday so I’d have to wait until the Monday after that. That was the point when I decided to go private and was seen by the very SAME doctor in his private clinic on the Thursday, three days later.

This is just off the top of my head, it’s by no means a comprehensive list and reading every one else’s experiences it really makes me angry that the NHS is so poorly run.

It’s not lack of care that’s the problem, it’s just poor organisation.

13

I have had several missed mri etc scans missed her 2 diagnosis, cancelled appts, gp delaying you name it and ive had it happen until i made formal complaints, got copies of my notes etc, now things run quite smoothly and if they dont i ring and they are on it straight away.

14

I had private treatment but there were plenty of bungles.As far as I could see the only difference in treatment was having a private bedroom. All other treatments and appointments were exactly the same as NHS.

Surgery booked for 9am delayed for three hours because of lost notes.

Long waits for out-patient appointments.

Long waits (up to three hours) for radiotherapy.

Appointments for results made before tests were even done.

Doctors and nurses attempting to take blood or blood pressure readings on the arm where I’d had node clearance. (Have since drummed it into my husband’s head that should I be unconscious he keep the medics away from that arm!)

All minor complaints compared to many of you, but it does show private treatment is no guarantee of efficient health-care.

AlexG

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Bump!

16

Hi Alex G,

Is this the post you were trying to “bump” up. Do hope my reply to you won’t be censored!!!

Marjay

17

My biggest nightmare has been the long wait for results. I know this is such a stressful time for all of us, so if there’s anything that could be done to improve results timing, so many of us would be spared the acute anxiety in The Waiting Room.

I have had superb treatment throughout (though I don’t have anything to compare it to, generally having an ox-like constitution). Breast clinic were lovely from receptionist through all the treatments to the doctor who eventually gave me results and appointment with surgeon. Surgeon and BCN have been very good and I’ve had calls at 7.30 in the evening, even if just to say “no results yet, but we’re going to scream at them tomorrow”. Superb surgery treatment except for one incident which has been taken forward following a letter from me. Oh, and one lost blood sample, but the only outcome of that was having to use anti-MRSA shampoo for a few days.

I know I’m still early on, and will possibly find other whinges, but it’s the path results that have caused me the deepest distress.

18

Forgot to say, I wonder if private patients would have to wait 12 days for results from a re-excision? I have no idea and I’m not trying to be controversial, but would be interested to see if there’s a difference in results timing.

19

I have had so many problems with my treatment and when I saw this topic, I couldn’t resist. Please bear with me as it may turn into a rant for which I apologise now!

My Gp told me that I was not in the right age range (i am 42), I had no maternal family history of BC and that breast cancer was not painful, so therefore it is not likely to be breast cancer…(well she was wrong!)

My Oncologist went on 2 weeks holiday and so I had to wait for 3 weeks to get my results, then waited another 3 weeks to start chemo and yet they had told me my cancer was aggressive.

I have to have my chemo and radiotherapy in one hospital (over 50 minutes drive away), and my surgery in another. These hospitals are dreadful at communicating with each other and all sorts of letters, results etc go missing or can’t be located on the computer.

I am out of area for the hospital that I have to travel to for my chemo and radiotherapy which has caused huge delays and problems with my care in the community (eg picc line flushes and blood tests) as the hospital giving me the chemo will not fund the nurses in my area to come out and see me.

Each clinic appointment I have to wait at least 1 and a half hours, the longest was 2 and a quarter hours before I was seen. I then have to wait between 2 & 3 and a half hours for my chemo appt time to ensure that my chemo has arrived on the unit from the pharmacy (on the same day), and then once in the chemo unit have delays of up to an hour before they start the chemo drip. (On a chemo day I can be at the hospital for up to 8 hours having my clinic appt and chemo).

I have been allergic to the dressings for my picc line. I phoned tissue viability nurses & practice nurses etc to find out different dressings that they could try. I was told that the hospital had these different dressings in stock, but when I told the nurse treating me she said that she didn’t have time to find them and put on a dressing that I told her that I was allergic to, because she said she didn’t have anything else.

When I was told to go to the oncology ward after my arm was hot, swollen and red and oozy with an infection in my picc line, I overheard the nurse co-ordinator of the unit swearing, using my name and what they were going to do, because there were no bleeping staff to look after me or anywhere to put me. I later had the same person moaning and moaning about not having time to take my bloods and that I would just have to wait etc… After 4 hours of waiting on a chair in the middle of nowhere, I was sent to a ward and sat on a chair in the middle of nowhere whilst I waited for my results. They also left me with my picc line uncovered for more than an hour and a half whilst staff had lunch breaks and continued nursing patients in designated areas. My total time in hospital waiting that day was 11 hours! Not even a cuppa tea was offered or apologies.

After I got home from that horrendous day at the hospital I started to get the shivers as the infection started to set in. I called the hospital who advised me to have a paracetamol and let the antibiotics work. The shivering lasted 12 hours! I thought I was going to die, but after 2 calls to the hospital, they didn’t want me to return. The infection did get better but it took several days and more stressful calls to the hospital telling me to stay put and be monitored by a community nurse once a day.

I always have to wait for all my drugs from the pharmacy to come before I am discharged. Even after being there all day, having the same drugs each time. I still have to wait.

At my first clinic appt I asked the oncology registrar whether I could still use tampons whilst on chemotherapy. She told me that I could use a condom instead. Work that one out? When I suggested that there may be a communication problem and was there anyone else I could ask, she became very rude and told me ‘that they only deal with oncology there and not anything else’. I requested to see someone else the next time.

I could write more, but I am feeling more angry with each paragraph, so I will stop.

Thanks for allowing me to have my rant. They say there is always someone else worse off than you… Well, I feel sorry for whoever that is.

Lone

20

I think i must have been realy lucky with my cancer treatments and hospital as ive always had exelent care throughout from the NHS and realy cant praise them enough, When i found my lump i saw my GP on the Monday who then faxed it through to the breast clinc ,the breast clinic rang me tues morning,i was seen in the breast clinic on thurs ,and had mammos,ultrasound,FNAs/Core biopsies and was told to wait in the waiting room for about 45 mins , i was then called in by the consultant and breast care nurse and given my DX, my breast surgeon said he wanted to operate as soon as possible so had my surgery 5 days later.

All my treatments have been pretty much on time, with no dalays or mix ups and all the staff have been realy lovely.also after CT/Bone scans ect ive been able to ring up my clinic or ons secretary after a couple of days to see if the results are in ,if they are back my oncologist will ring me after clinic with them so i have’nt had the awfull anxious long waits to cope with thankfully.
I know not everyone seems to get this standard of care from the NHS,to be honest i though this was normal procedure for everyone untill i read of some other peoples expierences on the forums, i think it certainly should be the standard for everyone with cancer, but there seems so much variation accross the country again which just isnt right.
For me i couldnt have had any better treatment going private ,but think reading others expierences i was proberly just very lucky.
Linda