Hi everyone
I would like to ask about the continuity of care that secondary patients are getting. I’m not sure if my frustrations with my “care team” are rare or the norm?
I was diagnosed with bilateral lung mets in April 08, have had FEC x 4 ( should have been 6 but that’s another story),radiotherapy to zap my ovaries and am now on arimidex.
For all this time I have never seen the same consultant, registrar or oncologist twice in a row, in fact I have now seen 7 different clinicians at my appts and am sick of answering stupid ( only my opinion of course) questions again and again. Such as " so have we done anything about your ovaries?" ( Only 7 months after the radiotherapy)
I want to scream “try reading my file”
I could go on for ever about differences of opinion between the clinicians, the change from what I am told one appt to the next and then what is in the follow up letters to my GP etc.
I am wondering about changing my hospital but am worried that it will be the same every where.
Any help would be much appreciated
Sorry to go on but this has been brewing for a while and I think I am ready to explode!
Thanks for your time
Jayelle
Hi Jayelle…I would be very unhappy at seeing so many different staff…the great thing about my hospital is that I only ever see my oncologist and the same oncology doctor from his team…I feel they really, really know me…I have been seeing them for over 5 years…I have input into what treatments I have and I have been seen at 2 hours notice when I suddenly developed some horrible nerve pain. I see the oncology doctor every 3 weeks when I’m at the hospital to pick up my Xeloda tablets and I have tumour markers taken and the results from them at each appointment. I feel I’ve had excellent (NHS) treatment.
That’s my feedback…hope you get some more to help with any decision you make…xx
Hi Jayelle
No wonder you are frustrated! I have had a similar treatment from my oncologist and her team as Belinda says. They know me pretty well by now as I also had the same team since my primary dx 5 or so years ago. Sounds like you’re getting a bad deal where you are. Maybe see how many of us reply to this so you can judge if you are the exception rather than the rule at your hospital. It must be so frustrating to explain things over and over again and not to say a ‘bit’ worrying when you wonder about treatment options.
Take care
Nicky x
ps from your posting I seemed to have tracked you in the treatment department, FEC in May last year (did manage 6 of the lovelies!), rads to the ovaries and Arimidex after, the only difference is my mets are in my bones.
Hi Jayelle
I was admittedly only diagnosed in December but since then have seen my oncologist himself on three occasions and another lady oncologist (who is absolutely brilliant) twice. I’ve seen various other doctors buzzing around while I’ve been waiting for appointments but have so far only been seen by these two. I’m back in on Monday for blood tests and a quick check-up before my third EC chemo on Tuesday so we’ll see who I see then.
I’d also be very frustrated if I were you and having to answer questions which should be easily answered from reading your notes. Treatment-wise I’m hoping that the chemo will knock out my ovaries but if not then I’m told I will probably have Zoladex injections together with Arimidex.
Lesley x
Hi Jayelle,
sorry to hear you are not getting the quality of care that you should be. I have been dealing with my onc for 5 years, he has a large team of younger Dr’s that come for a year and move on. When not on chemo I may see one of them but they have already been introduced by onc. Next time you have an appointment ask receptionist if you can see the onc or when you have your treatment tell your concerns to one of the nurses.
I am not at all surprised to hear you are frustrated. Hope you get it sorted.
Love Debsxxx
Hi Jayelle
I know exactly how you feel you seem to be treated the same as me. Origially I didn’t see my oncologist for a year as she was away. I just saw one of her registrars. I did see the same one 3 times in a row and then she was moved on. That was the most times I have seen the same person.
last time I did see the registrar who actually saw me when I was admitted to hospital which was a bonus as she remembered me.
The only thing I would say is that most of the time my oncologist is in the backround and the younger ones to refer to her when they need to.
The doctor from the hopsice who I see about my pain management is brilliant and she went through all my scans with me right from the beginning and explained everything about them so that I could get it straight in my head.
Where are you being treated by the way?
Caroline
Dear Jayelle
I am sorry to hear that you are having such a frustrating time with your Oncology Centre.
I am coming to the end of nearly 2 years contact and treatment with my local Oncology Centre and like you am angry and frustrated by the sheer incompetence of the dept. I have had drugs put into my body and radiotherapy applied to it but any kind of care of me as a reasonably intelligent and polite human being has been almost entirely absent. Lack of information, poor communication, arrangement of vital tests like echocardiograms and bloods forgotten and like you seeing different doctors at each appointment and never without at least a 2 hour wait to be seen are my main complaints. By the way I have written 3 separate official letters of complaint.
Due to the stress I was under as a result of the way I was being ‘processed’ not cared for by the hospital I would have given up treatment some time ago had it not been for the one shining beacon of this hospital dept. which is their mobile chemotherapy unit where the staff is caring and where I managed to arrange to have most of my treatments.
The latest gem happened recently just prior to my last herceptin treatment when I asked the doctor (another one I had not seen before) if I would get a follow up echocardiogram at some stage after the end of the treatment as my LV heart function had decreased by 20% as a direct cause of the treatment and I am suffering from unpleasant heart related symptoms. Her answer was a definite no at which point she reminded me that I had signed a consent form accepting that herceptin treatment carries a risk of heart damage. I was not aware that signing a consent form precluded you from any further monitoring or possible treatment if the risk became reality. I was so shocked by her response I did not say anything about it at the time. I have since written to my consultant about this but not yet had a reply.
Hi Jayelle,
I don’t see my Onclogist every time I go for my three weekly treatments of Herceptin/Zometa.Sometimes I see one of her registrars and if Onc is on holiday then there might be another Onc filling in.I get very good care at the Linda Mc Centre in Liverpool and just accept this as part of the course.
The only thing I do object to is the lack of nurses administering the treatment in the chemo unit.There are only two nurses there usually.The last couple of times I’ve been there for 5/6 hours.There are people sitting there tired and in pain and you would think that the chemo unit would be one place where they should have more nursing care for that reason.
Alli x
The more I read about the experiences of others with chemo etc, the more I think I must be really lucky with my hospital (Musgrove in Taunton)
Admittedly I’ve only had two chemos so far, but on both occasions I’ve been in and out within around three hours - this is including having Pamidronate as well which takes an hour and a half itself. Last time I only had to wait around 10 to 15 minutes before being seen and the chemo was started within 20 minutes or so of that. I think my experience is unusual though, judging by what I read here 
Lesley x
Hi All
Thank you so much for taking time to reply, I am pleased that some of you receive better care than me from your medical teams. It is so very wrong though, that so many of us have similar frustrations and have had to make complaints to try to get things resolved.
I did mention my concerns to the consultant I saw last time, who was supposedly head of service for the dept. He basically said “sorry but thats how we work here and although I have heard this complaint before there is nothing I can do”. He then proceeded to blame it all on Gordon Brown???
I am visiting my local hospice for the first time next week so maybe I will chat this through with the doctor there and see if she can help.
Caroline I have sent you a private message about this, thanks.
So thanks again everyone, it is great to have somewhere to ask this type of question and get honest answers.
Jayelle
Hi there,
I think you are within your rights to ask to see the same person consistently. I know you can do this if you wish, at the hospital where I am treated (Addenbrookes, Cambridge). I do not always see the same oncologist but it is usually one of a few whom I have got to know quite well over the years and I have always been happy with my care.
Jenny
I wonder if this is something you could raise with the PALS team? (patient advice and liaison) You are supposed to be able to get somebody to listen to your concerns and argue on your behalf. As it’s a policy thing, and not just a series of errors, I think it’s something they should be made aware of. I work in the NHS and we are constantly expected to be improving our service and showing evidence of listening to patient’s wishes as we do so. I’m sure the majority of patients would want some sort of continuity of medical staff - it’s the difference between being treated as a person as opposed to a patient number. Also, it would make their job much more satisfying, I’m sure.
The other thing would be to write to the senior guy, as they have to act on written complaints, whereas he could just shrug off your question to him face-to-face. You needn’t make it sound ‘complainy’, but letters do get results.
All the best
Jacquie
Hi All
Just wanted to say thanks for the further replies.
Jacksy - I have now made contact with the PALS team at the hospital and will see them tomorrow after my next appt. They have been very helpful so far.
Following info at the BCC Secondaries day on Monday ( what a great day, thanks so much to BCC for organising this)I have also accessed the NICE guidlines and updates so feel better prepared for the next meeting and seeing PALS.
Thanks again
Jayelle
Hey Jayelle
That’s what we’re here for 
Hope you get some decent answers from your onc. Let us know how much you beat him up - verbally of course!
Nicky x
Hi J
It was lovely to meet you on Monday – good luck with all of this!!
Marilyn x
Hi J
Great to meet you yesterday, good luck for tomorrow. I’ll be thinking of you.
Sue x
Hi J I do hope it goes well, you certainly have a case, and i agree with everyone else this is unacceptable and certainly hasn’t been my experience.
Take care
Hi All
Thanks for all your good wishes, and it was great to meet some of you on Monday.
My appointment was a real mixed bag.
As I sat waiting in the consulting room my heart lifted as I realised that I was going to see the same guy as last time, had he been listening after all?
After telling him that the back pain was still there and not much different to last time he said " as it’s no worse I think we’ll leave it"
Heart sinks as I ask “but what did the MRI show?”
Heart sinks further when he says " Oh have you had an MRI?"
This was the man I complained to when the previous registrar failed to arrange the MRI and so he had not only heard my complaint but requested the scan himself at my last appt’. So much for MDT meetings, continuity and standards of care.
The good news is that the MRI showed no bone mets, but did show “a bit of a disc problem - you can see a back specialist if you like they can do injections for the pain”.
“Yes please some good pain relief would help”
It was not until my GP went through the report with me (faxed to him at my request so I could find out what it actually said) that I found out that I have a “markedly degenerated disc” with the damaged disc material encroaching into the nerve cavity - ouch - so glad I checked on the scan results!
The bad news is that the CT scan shows there is a small progression on one of my lung mets so have to be re scanned in 8 weeks and then if still progressing it’s back to the chemo - oh joy!
What to do next? Well I have requested the form from PALS to get a full copy of all my medical notes etc and once I have these I will see how I feel. Maybe it’s time for a visit to the Marsden - what do you think???
Sorry to be moaning again, I promise to find a fun story to post some time soon.
Jayelle
Hi JayelleBee
Doesn’t sound as if they are taking any closer look at you or your results does it? I understand they are all busy and have other patients but, for heaven’s sake, it is our lives and quality of life they are dealing with here isn’t it? Pack up your bags and move to the Marsden! I haven’t heard or read a bad word about them and you seem to have good reason to request a move away for your ‘team’ (a very loose expression in your case). Hope this hasn’t troubled you over the bank holiday and you’ve been able to stop fuming. Don’t worry about the moan, this is what we’re here for
Nicky x
Hi jayelle,
It was great to meet you on monday.i’m glad you are going to go through PALs. the care you’re getting is clearly not acceptable. It takes minutes to scan medical notes and if your doctor couldn’t even be bothered to do that I despair. Good luck- there must be other people experiencing problems with this department.
nicky