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

48 REPLIES 48
sdfmeg
Member

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

Worst thing for me has been the timings. First went to GP very early July, breast clinic 21st, and I knew then it was large tumour with node involvement but had to await tests to confirm. Unfortunately, onc then went on holiday so when I went for my first chemo on 23rd August I hadn't been booked in. They reluctantly booked me in for 29th. Oh, and then I also had a CT scan, but it took so long to come through that the results weren't available in time for my first oncology appointment, so we had to begin the chemo without knowing whether or not I had any spread. Tumour marker insertion took place the following week, when I was neutropenic (luckily I called in to the chemo unit to check and they did blood tests then put me on antibiotics), and it now turns out I was so badly bruised from the multiple biopsies that the measurements they took aren't of much use. Then, when I had the follow-up US it was a different radiologist, who felt he was at a disadvantage because he hadn't done the original scan, and the timing wasn't brilliant. I had oncology appointment in the morning, followed by chemo and US the same afternoon - which meant the onc didn't have the info when I saw her and I then had a further three-week long wait. Now awaiting yet another US appointment and hoping it will be far enough in the future for any effects from the taxotere I had yesterday (my tumour appears to be loving the chemo, which is making me unwell but seems to be feeding the lump) to be evident. All the various departments seem to give you appointments which are convenient for them, but which are very inconvenient when it comes to fitting in with your other appointments, low immunity and convenience of results with regard to planning. It's a shame they all seem to be working completely independently. A joined-up service would be so much better!

sarah66
Member

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

Hi i too feel frustrated and want to start treatment asap. Diagnosed with recurrance on 8th oct had ct bone scans and pet scan numerous appointments backwards and forwards still no treatment plan, also have ? mets to lung but very difficult to biopsy as close to heart valves apparently so going to leave well alone and treat as mets with chemo & mastectomy , off work at momment but do not feel 'sick' so faffing about really . Going to phone BC nurses and see if i can get an appointment asap as it is driving me mad !!!! xxxx Sarah66

stressy_messy
Member

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

Hi, I've not got any complaints with my medical team, But was reading this thread and thinking how things have changed since I was diagnosed 5 years ago, referral time was 2 weeks for suspected BC. I was diagnosed at the end of September and had my operation on 24th of October and started Chemo 4 weeks later. Now the NHS is in dire straits, I have been having problems with my neck and back so Oncologist said he would arrange a bone scan and xray, that was nearly 3 weeks ago and I'm still waiting for an appointment to come through. I've never had to have any tests done over the 5 years so don't know if this is the norm or not.
Sorry to read all the problems that you have all had and good luck with your treatment Blackswan, when you finally get started. It is really awful that your still waiting.
Best wishes Melxx

Jo_BCC
Member

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

Hi BlackSwan


Welcome to the BCC discussion forums where I am sure you will get lots of good, honest support from the many informed users of this site.


While you are waiting for replies I have put for you below the link to one of BCC's publications you might find helpful. Also if you need someone to talk to in confidence, then the helpline team are only a free phone call away 0808 800 6000.


http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/breast-cancer-you-diagnosis...


I hope this helps. Take care,


Jo, Facilitator

BlackSwan
Member

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

I had very nice consultants, a very good radiologist, really lovely people for some the scans, but a useless BCN.
I have a large aggressive tumour with positive nodes, and have been waiting 7 weeks so far, but still not had treatment, but I've had lots of scans, biopsies etc.
The long wait for treatment is driving me nuts!
The problem seems to there are several steps: appointment, tests, appointment, scans, appointent, another appointment, tests and then treatment.
Each step has a built in delay of either 1 or 2 weeks, so it all adds up to big delay.
The nhs needs to give cancer much higher priority than it does. A 62 day target from GP referral to first treatment is far too long.
squeakymouse
Member

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

And another one. Radiotherapy dept rescheduled all my appointments without telling me. I turned up for my 9am one today only to be told it had been rescheduled to 8:15 pm as had all my subsequent ones, but that as I had turned up for 9 am they would fit me in. Nurse then said 8pm was the latest they could do rads anyway so no-one should have booked an 8:15 slot. After faffing around they reinstated my original times.

foxyferret
Member

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

All of your stories make mine seem trivial but I have been treated shoddily by my BCN's and I will be complaining about them as it's the only way to change things.
My surgeon and oncologist have been wonderful but the breast "don't care" nurses have caused delay to my treatment and detriment to my self esteem.
squeakymouse
Member

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

Hi

I was diagnosed with inflammatory BC in April 2012 and have also had delays and mix-ups – although not in the same league as people who have had missed diagnoses or the wrong treatment. So far it seems like I have had to chase and follow up nearly every aspect of my treatment and have made two formal complaints to the hospital, not to start a witch-hunt but for the benefit of cancer patients who are too ill to chase for their treatments.

  1. Information about appointments – The hospital phoned me to arrange my first chemo and sent me an appointment card for it. I asked about the dates and times of my subsequent appointments when I went for the first one and was told they would send me the details. They never did. I tried to phone them repeatedly but no-one was answering the phone so I had to go there in person to find out the details of the other appointments. . In response to my complaint they said this was because they had my old address on their file – however I asked them to correct this when I attended a non-cancer-related shoulder X-ray in July 2011, again at my first oncology appointment before starting chemo, and again when I attended my first chemo appointment! Also they said the phones were not being answered because they were short staffed. Luckily this wasn't the emergency chemo line...
  2. Herceptin – Impossible to find out when my Herceptin was meant to be starting as I kept being told there was nothing about Herceptin in my records, or that it was waiting to be booked. According to hospital response to my complaint my first Herceptin appointment was booked on 24 April for 12 July, but the hospital admin staff did not know how to find this in my records.
  3. Herceptin loading dose delay – First dose of Herceptin is given on the ward rather than the day centre as they need to monitor you for several hours afterwards in case you have an allergic reaction. Mine was a day late as there were no free beds on the ward on the day I eventually found out I was booked. I called in the morning to check a bed was available and was told someone would call me back but they did not, so I had to go there and wait in case a bed became available. I don’t have a problem with no beds being available as this was because of other people being too ill to be discharged, but again the lack of info was a problem.
  4. Docetaxel delay – this chemo drug was meant to be given on the same day as Herceptin. My first Herceptin was delayed for a day as explained above but they forgot to reschedule the Docetaxel so had to wait until the following week to get this. This meant all my subsequent appointments had to be rescheduled to preserve the 3 week gap so I was back to square one with organising them. I got passed from pillar to post trying to get them rescheduled, as everyone thought it was someone else’s job and I only persuaded them to do it when I refused to leave the hospital until they had done so!
  5. Wig referral – The nurse at my first chemo appointment faxed through a referral for a wig but it took 5 weeks to arrive in the orthotics department in an adjacent building of the same hospital .
  6. Mastectomy - While waiting in the hospital for my op they mixed me up with another patient and I was called to go to theatre for a gastric band operation! Luckily the nurse and hospital porter spotted the mistake. On arriving in theatre for the correct op, the anaesthetist had spotted they had recorded my weight as 85kg instead of 58 kg. I dread to think of the outcome if I had been given an anaesthetic dose for an 85kg person. By this time I was in tears and ready to jump off the trolley and run out of the hospital. Finally I was meant to be given a soft prosthesis on discharge from the hospital but due to another case of every department thinking its another department's responsibility I am now waiting for one to arrive in the post.

Lemongrove
Member

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

Lucinda, to be honest I think you should have your Zometa at the Marsden as well. I know it's a bit of a jaunt, but you need continuity, and splitting care can present communication problems.
As far as my experience is concerned, I have to say it has been very mixed (awful and superb). I am an NHS patient, and when I was first diagnosed at my local hospital (the Princess Royal in Haywards Heath), I was just offered palliative treatment - endocrine therapy (Letrozole), and oral bisphosphonates. (Bondronat). There would be no attempt to try curative treatment, no scans to monitor progress (unless I complained of pain), and no biopsy of secondaries if treatment failed. . I wasn't happy with this because as I was oligometastatic at the time, I at least wanted at least to try curative treatment (as there is sometimes chance of a cure). I was also unhappy that there would be no routine scans, as I knew that cancer mostly progresses in an asymptomatic way, and this would have allowed progression to go un-noticed. Similarly I knew that cancer often changes it's receptor status, and so without a biopsy my cancer could have changed it's receptor without notice, and then I would not have received the treatment I required.
Anyway, because of this, I voted with my feet, and went to Charing Cross Hospital (which is part of Imperial College). The Hospital is incredibly busy, there are often long waits, and lack of communication, but the care I get now is faultless. The Prof in charge of my treatment is considered to be one of the leading research scientists in the UK. He is also a senior Harley Street Consultant, a senior lecturer in Onclogy, and a cancer journalist for the Daily Express- so I get his brains and experience for free (or at least the 40% tax my husband and I have paid over the last 40 years). When I go to the Hospital I invariably see him, because I suspect he thinks this continuity saves time (as then I don't have to repeat my story to doctors who don't know my case). He has bent over backwards to provide everything I have asked for (even when NICE have said I shouldn't have it). At the beginning of my treatment he agreed to try curative treatment (chemo and rads), and even Cyberknife stereotactic rads (which is not yet approved by NICE). When the C eventually progressed, he provided drugs which NICE have said should not be provided (Fulvestrant), and when this didn't work he performed a biopsy to find out if my receptors had changed (despite NICE advice that doctors should not biopsy secondary tumours unless the primary was never biopsied). This biopsy has probably saved my life, because my cancer had in fact changed it's receptor - my c is now no longer ER+, it is now Her2 +, and if this had not been discovered, I would never have received Herceptin. The Prof is sometimes a bit off hand (because he is rushed off his feet), and seems to regard questions as a challenge to his authority, but I think he is wonderful (not in a dodgy way I hasten to add), because he is devoted to his patients, and does what he thinks is right irrespective of cost.

lucinda
Member

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

Have a port fitted so have to go to day unit to have bloods,despite having an appointment had to wait 2 hours because they did not have a vacant chair in the blood transfusion unit and when I eventually got into a spare chair had to wait for a nurse who could access my port.Had to go back following day for zometa and as my appointment was 9am expected not to wait around as they had not had time to get behind.After waiting 1 1/2 hours asked one of the nurses if they had forgotten me-answer oh dear yes we have,you are the only one down for zometa today and forgot to put you on list.When I did get my treatment told I am not dfown on computer for any further treatments so can i sort it out with onc.I don't actually see onc at that hospital as go to RM but managed to get them to agree to do zometa locally,or at least I thought I had so now I have to get RM to contact local hospital and see if they will continue the treatment.I actually transferred to RM because onc told me I did not need any scans as he was sure my disease was stable,I have exstensive mets and was concerned about progression but his attitude was what a shame what will be will be.

Heidi00123
Member

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

Hiya Dulcie, I have seen u are Metaplastic. Would love u to share your experiences although I'm assuming they not been good ones! Take care, Heidi x
Amore_Dulcie
Member

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

Hi Squeakymouse...my treatment has been hell too! I cannot believe what my Onc has written about me to GP..only by chance have i read the the letter...the Onc has told a load of 'untruths' about me to the hospital i am now going to for a second opinion...i had difficulty in believing it was ME she was talking about...!!
It would take to long to detail all the C**p that has gone on since my diagnosis...but i will say...once you go against the 'medical' proffession...its's at your PERIL!
Dulcie xxxx
happynipple
Member

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

Hi,

I had my treatment as a NHS patient. I've experienced delays,mix ups and hell!. First of all, as many of you, when in a regular gynecologist examination I commented I could feel a lump, I was dismissed as, nothing palpable, and probably something related to my period and 6 months later .... the nasty surprise. I had my chemo at Charing Cross Hospital were I usually waited between 3 and 5 hours to have chemotherapy. Also I was told I would start with chemo to reduce the size of the multifocal cancer and have a less invasive surgery. When along the line of the treatment I requested a meeting with the surgeon, she very rudely informed me, that in a multifocal cancer there was always mastectomy. They lost my records several times. When I asked the BC Macmillan nurse about brachytherapy, she told me she didn't know what was that!!!!!.

I've changed hospitals to RM, I must admit there was a significant improvement but, yes, I usually have to wait to be seen, they mess up my record and suddenly, I was HER positive!. I experienced bleeding a couple of years ago and, being on Tamoxifen I was very concerned, I had to go through my GP to have the pertinents test done because, according to them, it was not related to their field!!!!. I was given medication that contained hormones by one of the oncologist to help with vaginal dryness, I didn't think that was the wisest thing to do being my cancer hormone positive and, if you want to know more I just posted something about my recent experiences.

Ninja
Member

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

CzechMate said: have surrendered precription drugs to nurses who then fail to dispense them on time and in the correct quantity and sometimes not at all. In the end I insisted a note was put on my file at the private hospital and local GP saying "whenever I am admitted to any hospital I will not surrender drugs and I will take full responsibility for any prescription drugs I am taking when admitted".

I always keep mine and my file is marked 'self-medicating'. I have 8 ENORMOUS tablets for my Crohn's every day. They are so huuuuge that I have to swallow them with food as they won't go down with water alone. If the staff dispense then, I'd get them with a tiny 20ml of water and at the wrong time. I also don't trust them to dispense my Gabapentin (take it on time or I have a seizure) in a timely fashion. No thanks.

easybee
Member

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

i have just recently been diagnosed 29th june 2011 with invasive lobular in my right breast....however, the SHO who either wrote or dicated the letter to my GP..or maybe the typist...decided to type that it was my left...i received a copy of this two days before they wanted me to go for surgery...i declined with a vote of no confidence...i have since two weeks later after I pointed out the error to the mdt involved in my case received another corrected and a line saying...i hope this didnt cause you any distress...what?? are they having a laugh?????

dancing_girl
Member

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

Hi,
I had to ask for my wbc injections all four times after I was told I needed them as never written on notes and that's just. Booster week for rads not on paperwork. Also notes not written up properly after appendix problems so when I arrived for my 5 week delayed 4th chemo, it wasn't ready and doctor couldn't be found to authorise it. On all occasions the nurses have had to find a doctor to write the prescription up or confirm treatment.
Everyone I have dealt with has been caring, but the lack of communication has meant delays and gives nurses unnecessary extra work.
Also there was a lack of liaison between onc and surgeon following appendix problems which meant delay between chemo was longer than it needed to be. If you get off the train for a non cancer reason it is difficult to get back on again. You need to push.

m1yu
Member

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

OK, my latest one.

Went to clinic Wed for Zoladex and Zometa. Receptionist was shocked to see me and said I wasn't actually booked in. Needless to say that the drugs weren't that and only done bloods. Was promised that they will get the drugs last night and they booked me in for this morning. However, got a phone call this morning saying that the nurse put the wrong date in and the drugs won't arrive until tonight. Booked me in again for tomorrow afternoon... and I'll wait and see what happens next. Would I be third time lucky?? Who's fault is this? I got lots of apologies, but nobody is taking responsibility.

Notes passed around with nobody checking them and taking any notice... wrong dates, wrong drugs, records missing or misplaced. Those things shouldn't be happening so offen!!

CzechMate
Member

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

Just saw this thread, where would I start???

Private care means you MIGHT get a room to yourself and you probably see your lead clinician instead of his oppo. In my area a very questionable advantage. Private hospitals are sometimes too small to cope with emergencies - big is beautiful in this case.

I carry a note in my purse and a luggage label in my handbag and have even considered a tattoo or one of those ugly SOS bracelets saying NIL BY ARM because hours after surgery there was a doctor injecting me. I was also found to have an allergy to a drug and they kept giving it to me in different brands until I got myself to another hospital and was told "oh, you're allergic to that, of course we won't give it to you".

I have surrendered precription drugs to nurses who then fail to dispense them on time and in the correct quantity and sometimes not at all. In the end I insisted a note was put on my file at the private hospital and local GP saying "whenever I am admitted to any hospital I will not surrender drugs and I will take full responsibility for any prescription drugs I am taking when admitted". Three strikes and they were out!

Complain and keep complaining, formally if necessary because it is the ONLY way things will improve. If we sit back and do nothing then those involved in our care will just carry on because we are "business as usual" for them. I am not saying that they don't care but they will never care as much has we do because it is not happening to them and their lives are not at stake.

We should do whatever is takes to make sure that the mistakes/oversights etc. visited upon us are not repeated on the next person and that takes energy and time.

Most members of the medical profession would choose to be treated in the NHS if they had cancer.

xwelcomex
Member

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

Aghhhhhh. Yet another avoidable problem, courtesy of hospital oncology unit. There's being a pro-active patient (ok) and having to manage your own care (not so ok). Jeez, so peed off and frustrated I might actually cry. 😞

moser
Member

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

Nicola, I so agree with you about our NHS - it's brilliant in so many ways. Mismanagements are in my experience unusual (I only had the one issue that I posted about earlier in over 7 years of treatment/check ups etc). I worry about the changes that the "cuts" will make to this.

crawfo64
Member

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

I know it's a little bit off topic but mention of Breast Care Nurses makes me wonder about the differences between different geographical and how involved they get with your care.

I was very surprised when I was first diagnosed that I wasn't allocated a breast care nurse or had any support or even contact with one. 8 years later, diagnosed with secondaries and I still have no contact unless I initiate it. I don't even have their phone number and have to ring the hospital switchboard and ask to be put through and I don't have a named person, I just speak to whoever picks up the phone. So far I have phoned them three times and I can't honestly say they were of much use at all. I phoned them on one occasion because I was really concerned that I had found a new lump and she told me to keep an eye on it and go to the gp if I was concerned...Well, yes, I could have worked that out for myself.

moorcow
Member

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

Hello there,
in the year since my DX I have had excellent care from the majority of people in the NHS - but the stunning thing was I counted how many people had been involved in my care and it was 76 health professionals in one year..no wonder it was exhasuting! However I did have two major problems -
I made a formal complaint about the BCNs who were rude and inadequate and also thought it was OK for me to have 5 different ones allocaetd to me for first 5 encounters with them...not at all helpful when they are meant to be your emotional support.
I had a student in on some of my radiotherapy, the first time she was there I lay down, arms above head, feeling like a rack of meat, and she didn't introduce herself and just starred at me. Normaly I would have asked who are you, but i felt so tired and low at that point I didn't....later made a complaint about that too!

I really agree about being vigilant about our own treatment, its scarry but we need to be alert. Also I fedback to the clinical manager about the 76 health professionals and said if they can do anything to reduce that it would help quality of care ( ie they would know you don't take oral meds).

After all that I must say we are so so so lucky to have the NHS, my aunt just died in USA of BC, and boy are there stories to tell there!
bw Nicola

Janvis
Member

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

I found my lump at end of June and waited a week for GP appt then 2 weeks for appt at clinic. waited further 2 weeks for further tests, then 18 days for results. Then added to waiting list for 4 weeks for surgery and 3 weeks for results after.

My cancer is a Grade 3 agressive cancer which did move between June and sept due to all of the delays. Then told would need to wait for 14 weeks to start chemo till I told them it was too long.

All this with a clear mammogram done only 6 months before lump found. Told it could not be seen.

Only seen BCN a couple of times and have not been contacted at all.

All chemo appts have been late. The shortest 2 hours and longest wait 6 hours. Have still been in hospital at 8 oclock at night on treatment.

Have seen a different member of onc team every time so no consistency.

So I know how people feel about the system

I have however, met a lot of lovely people with these long waits.

Janette xx

Blue_dragonfly
Member

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

I have had such an easy time compared with some others. I found my lump late nov, at breast unit 1st wk of dec, had the mammogram & ultrasound Monday along with biopsy, by Friday had results, had all my test ready for op , then the SNOW. Can't blame nhs for that, got date for 4th Jan, but found a problem with my blood and had to be referee to haematologist, got results 18th at 3.00pm and operated 7.30 next morning. And I had private room, where my husband and daughter waited and stayed with me all day.
My BCN are at the end of the phone when ever I need anything, my surgeon was lovely never rushed any appointments, the oncologist again caring and available.I have had added problems and needed lots of extra tests and my local hospital has fitted me in all the time

moser
Member

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

On my first cycle of tax (I had previously had 6x FEC 4 years earlier), my onc told me he wanted me to have a nadir blood test to see how low my bloods were at the lowest point of the cycle. I had this done at my GPs and it was sent off to the lab. At 9pm that night i got a quite panicky call from a GP who was from the out of hours service and seen my bloods. He said I had to go to A& E IMMEDIATELY and have IV antibiotics or I was in serious danger. I felt absolutely fine at the time (had actually just gone back to work that day) and I told him that my temperature was normal, that I was fine, and that I knew these bloods would be low as that was the point of them being taken. He got very annoyed with me and told me again i must go immediately go to A & E or he would not take responsobility for the consequesnces. I asked if he'd been in touch with the chemo unit or my onc, and when he said he hadn't, I told him I had no intention of going anywhere because i was fine, and that I'd contact the chemo unit in the morning and take their advice.

When I spoke to them the next morning they were quite shocked and said that he should absolutely not have told me to go to A & E, that my bloods were actually not as low as many people's get and that it was a really good job I had not gone as i could have picked up an infection there. My onc said the same when I talked to him about it.

I was pretty certain I was right, because I'd been through chemo before - but it was still very scary being phoned up and ordered to go to A & E with the implication that if i didn't i could die. How many people "new to the game" would have had the confidence to tell the Dr who rang that they were't going? They could have been hospitalised and given huge doses of antibiotics that they did not need, as well as exposing themselves to the risk of infection.

I just thought thank goodness I had a little knowledge and enough confidence to trust myself. We are so vulnerable when we are having chemo and we are quite rightly instructed on what to do if we become ill in any way - but this GP clearly had absolutely no idea what did or didn't need to be done.

mnc
Member

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

I was diagnosed with DCIS in June 2009 and was told by my Breast Consultant that he wanted me to have a long life and that I thought I would want a mastectomy as soon as possible. I said yes I did. Six months later, yes, six months later I had modfied radical mastecomy. My diagnosis was now:

Two tumours grade 3
HER2 positive
ER and PR positive
Two lymph nodes out of 21 positive

If I had had the mastectomy done straight away, then it would have just been a diagnosis of DCIS.

I have had 3 FEC and 3 Tax, radiotherapy, Herceptin (on no. 16) and I take Tamoxifen. I have been told that I can never have the all clear!!!!

So the delay has made a huge difference to my life in that without treatment I was given a 65% chance of surviving five years.

Best wishes to everyone.
mnc

crawfo64
Member

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

I've just remembered another one re missing notes.

For a period of several months every time I went to the breast clinic they would ask what surgery I had and every time I went to the oncologist they would ask me if I remembered what chemo drugs I'd had. After this had happened a few times I worked out what had happened, somehow my notes had been split in two with each department getting half the picture, and just to make matters worse each department got the wrong half. It was funny rather than serious but it could have been more serious when you think for several months my oncologist had no idea what chemotherapy drugs I had been given in the past.

AlexG
Member

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

SimplesL,

On an earlier comment I said that the ONLY difference between the private and NHS treatment was that I had a private room during the days I was in hospital for surgery. I now know that my test results were delivered more quickly than it appears the NHS can deliver.

I sometimes feel I should 'apologise' for having private health care. It started off as a 'perk' of my husband's job, but when he retired we took over paying the fees. The fees take a size able chunk of pension, but we chose to spend our money on our health rather than have ANY holidays or days out. I do not justify - I merely explain.

Everyone should have the best possible care. I wish you all well.

AlexG

SimplesL
Member

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

I'm in the middle of a delay at present waiting for RT to be planned & started.

Following surgery I was referred. I can only assume my notes never reached the Onc side of things, as until I chased it up mid January 11 no appt allocated (Surgery was 16/11/10). After I called an appointment at the cancer outpatients arranged in a couple of days, but felt like I had been shoe-horned in; to be told RT is recommended as you have a risk of DCIS coming back in my lifetime.

Then told simulator being "serviced" & out of action for 2 weeks. Nothing heard I chased again, no response to messages left & BCN was "banging her head against a brick wall & not getting anywhere".

I formerly complained sending copy of letter to GP, the next day he called & reassured me delay would not reduce RT effectiveness but he would chase up Onc for me.

Later that evening my Onc called herself (don't they ever go home?), again reassured me re effect delay on my treatment, but then apologised as simulator not being serviced as I had been told, but actually being replaced! & out of action for 4 weeks not 2.

She did tell me I was "high" on the list; is this because I complained I wonder.

Surgery side went like clock-work, very well looked after despite anxiety waiting for the obligatory results for 2 weeks. I know they have to run tests in the Path Lab, but probably the worst time to deal with emotionaly.

Keep pestering them!
Lynne

cornishgirl
Member

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

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

kulakatz
Member

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

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

ChoccieMuffin
Member

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

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.

ChoccieMuffin
Member

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

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.

marjay12
Member

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

Hi Alex G,

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

Marjay

AlexG
Member

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

Bump!

AlexG
Member

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

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

hatty
Member

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

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.

crawfo64
Member

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

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.

Freespirit
Member

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

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...............................

triphazard99
Member

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

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!!

Hannah32
Member

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

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

Nicky65
Member

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

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!

mumx5inuk
Member

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

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

xwelcomex
Member

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

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. :-(.

dawnhc
Member

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

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

topsymo
Member

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

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?!

juliebtaurus
Member

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

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).

molsid
Member

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

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

m1yu
Member

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

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