Poor level of care at local Oncology Centre

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I was diagnosed with bc in June 2007 and have had WLE, Chemo (FEC), rads and am now on arimidex for 5 years and nearing the end of herceptin. I have been reading and getting tremendous support from the discussion forums but this is the first time I have posted a message.

Although there has been the odd comment about poor care occasionally on the entries I have experienced an appalling level of general care throughout my 18 months of treatment by the Oncology Centre. I was given a few leaflets in the early days, some of your own (excellent) and some of the hospital’s own.

The main problems have been poor communication, lack of information,not knowing how to contact the right people, being forgotten about and having to chase up appointments. Also, I know this to be a common theme, huge long waits in the windowless waiting room to see doctor (minimum 2 hours) and up to 8 hours to get treatment.

Just a few examples : hospital leaflet said you could ask for extra appointment to see onc. if any concerns so tried to make one to discuss benefits of herceptin, how it is given, how long etc.as no one had told me anything about it other than I was to have it. I was never given an appointment. The only info. I have had about herceptin is from your site…

Hospital leaflet on radiotherapy and appointment chart included 2 reviews. I did not have any reviews. When I queried I was told that as my review appointments had been made on Thursdays and no review radiotherapist worked on a Thursday I could not have one!

At last appointment with the onc. the dept had forgotten to organise an echocardiogram and a blood test both required for this appt.

These examples are just the tip of the iceberg. I have written 2 letters of complaint. The replies were of the ‘we are a very busy dept. and we will try harder in future’ type.

I have suffered from depression throughout this period and put it down to the way that I have felt dehumanised by the Onc. Dept. rather than having a bc diagnosis.
I have had some counselling from my local hospice which was helpful. I have also got a dog from the local shelter which has helped with the gloomy thoughts as I always feel better when I am walking him.

I am joining a user group in the local Cancer Network as I would really like to help them improve services to cancer patients.

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Hi!

So sorry to read about your poor care at your hospital and oncology dept. It serves to highlight YET AGAIN the enormous difference in care around the country and it really is a lottery as to where you live and what sort of care you get. There should be gold standards of treatment which should be applied to all hospitals with oncology depts. I feel I was very lucky in the surgeon and oncologist and radiotherapists I saw and in the very modern dept of the hospital, but I know that many people do not get this. It’s bad enough having BC without all the extra problems - most of which could be avoided.

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Hi Gwyns.
sad to hear about all your bad care at such a horrendous time inyour life. I too have had to ring up and chase thngs, I too have sat in oncs room after a couple of hours wait only to be told that he couldnt see me until I had had a couple of tests, so out I went to have tests first. Very frustrating and sometimes frightening as you wonder if people know what they are doing. My brain isnt too good and I didnt need to feel that I was responsible for checking everything. Other things too but at the end of the day I have to say my surgeon was brilliant and I have nothing but admiration for him. Kind, caring and gave me his time without rushing. Most of the nurses too very understanding, but not always /on the ball/. It was mostly appt. times/dates not received or tests not done when necessary
I think its great that you have taken on a dog from a rescue shelter. I am a great believer in the health benefits given by animals. I lost one of my two dogs couple of months ago but still have an 11 1/2 year old lurcher. I try to walk her every day for an hour round local fields and woods. Dont know who ends up dirtiest but it will help get my fitness back! Even if the weather is wet the look she gives me makes me feel guilty so I have to get up and out!!! and I feel so much better for it (when I’ve warmed up/dried off and got first hot drink in hand). The only weather that keeps me in is high winds, I get fed up of hanging on to my wig…
Take care, hope your dog brings you lots of happiness and hugs,

Chris x

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Hi gwyns,

I would actually write a formal complaint to the NHS trust - that will surely get things moving. There is no way that you will get a response about how busy they are in response to an official complaint.

According to my appointment card I was due to have two reviews during rads and I did have one about half way through which was just an examination to see what my breast looked like to make sure I wasn’t too burnt (I wasn’t at all until afterwards) and a “how are you feeling” chat. I was told the second review was put on my care by mistake as there wasn’t a clinic that day. I wasn’t too concerned about that as an appointment had already been made by the Oncologist to see her some weeks later.

What did the Oncologist do when they found the Dept.had forgotten to arrange the ECG and blood tests? Perhaps they may have had a word with other staff to make sure it doen’t happen again.

It is really poor that these kind of things happen especially with such a serious disease but a formal complaint to the trust will probably ensure the procedures are tightened up to help future patients. I know this probably won’t help you but might do you good to offload.

It is good to hear that you are joining the local cancer network user groupto help - good on you!

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Hi gwyns

I agree that the official complaint to the NHS Trust may be the way to go here. Being a busy department is not an acceptable reason not to respond to a complaint and they have a duty to be accountable. If they are that busy then it is paramount that patient care isn’t compromised - it seems from what you’re saying that it already is. I am not talking about waiting times in units, I think that’s a given when it comes to chemo as there are so many departments involved in the preparation and administration of the drugs - bloods, pharmacy, nursing. However, my understanding is that everyone needs to have an echo before they start Herceptin as they need to have a baseline measurement for your heart function before treatment commences and be monitored during treatment, so it is totally unacceptable and dangerous for them to forget about that. I’m sure the Trust will be keen to miminise their liability for potential cock-ups resulting from situations like this.

Good luck.

x

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I had a review during rads every week with a senior radiographer. My last 5 sessions were done as a boost, and I was seen by a Consultant radiographer before this as the area had to be measured and marked up with a square. If I had any problems I was told just to mention these when I attended my treatment sessions and they would get someone senior to see me afterwards. All in all I felt the staff made my treatment as stress free as possible and I was very grateful to them for this. I was treated in Edinburgh.

I would definitely make complaints as it sounds like they are not adhering to their own procedures properly and that needs to be addressed in my opinion.

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I am very shocked that you have been treated so badly Gwyns, although it has made me realise how lucky I am!

Throughout chemotherapy and Herceptin, I have had appointments to see my oncologist the day before each treatment to discuss any problems, get weighed etc, and I think it’s disgusting that not all oncology units have such a good system!

On the day of treatment, I have sometimes had to wait an hour until my chemo is sent up from the pharmacy, but to have to wait 8 hours is absolutely unacceptable.

All my appointments for Echos have been booked and confirmation sent to me each time, my breast care nurses are always available by telephone if I have any concerns, and one of them always sits in with me at my oncology appointments. I have felt thoroughly supported throughout this difficult journey.

Please, please complain about the shortfalls in your oncology unit, not only for your own sake, but for those who follow you. It is not acceptable that you have been treated so badly. My hospital is a very busy one, in SE London, serving a large community, and if they can do it successfully, then so can yours!

I think it is imperative that you have trust and faith in your doctors - and you are being shortchanged with yours.

They really do need to get their act together

Good luck

xxx

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Hello Gwyns

Poor you - I think from what people say it might be different in smaller hospitals, but in the very large ones (such as mine) breast cancer is factory medicine, unfortunately - I was one of 100s, rarely saw the same doc or nurse twice, and the whole process was very dehumanising. Do persist though with complaints as I think this is the only way to improve things. All too often I think people feel bashful about saying anything, no matter how poor the treatment, but you have every right to good care. In my case, the staff were rushed and not on the ball - e.g. the oncologist tried to put me on a triple negative trial (I’m not triple negative).I had to be to be in charge of my treatment and double check everything they said and persist with asking for consultations - all quite tiring when you’re feeling poorly!
What a good idea to get a dog. I hope you’re having some lovely walks together
take care

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Thank you for all your responses.

I tried to reply before but there ia a big blank space where my message should have been!

I am glad that most of you have had a much better standard of care.

My complaints were addresses to the NHS Trust. My partner and I also had a 1.5 hour consultation with the new Head of Cancer Services who was horrified by some of the experiences I had had and promised faithfully that improvements would be made. That was 11 months ago and I have no evidence of any improvements although I am told by the nursing staff that they are mostly managing to finish chemo sessions by 7pm instead of 9pm which was very common this time last year.As some patients have to travel nearly 100 miles to get treatment at this centre I cannot imagine what time they eventually got home!

Today I was promised a phone call from a breast care nurse in response to a query I made on Monday. You’ve guessed right. She did not ring. As you can imagine I have lost all confidence in the dept. I just hope that when my herceptin treatment finishes in March that it will be the end of this horrible saga (after I have written a 3rd letter of complaint to the NHS Trust of course).