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AIBU

To think DD's oncologist was insensitive?

(169 Posts)
merlotgran Wed 03-Apr-19 20:07:09

As many of you already know, DD has been diagnosed with a rare gall bladder cancer and sadly the prognosis is poor. Up until now she has been under the excellent care of the Hepatobillary and Gastrointestinal team but is now in the hands of Oncology. Her first appointment to discuss chemo was yesterday afternoon. Oncology outpatients was very very busy and we were relieved not to be kept waiting as DD has to use a wheelchair and the waiting room was packed.

The oncologist swept into the consulting room and with the briefest of introductions launched straight into the bleakness of the case, using words like 'terminal', 'slim' and 'palliative' before we hardly had a chance to sit down. In short, they will attempt chemo in two weeks time but she was almost certain that DD would not be able to tolerate it due to her poor liver function in which case they would stop!! Any questions were answered by being handed a leaflet to read at home. DD was then instructed to get measured and weighed on the way out.

The HGB team had been encouraging using words like, 'hope' and 'positive'. When on the ward DD was treated with kindness and compassion. This encouraged her to do things like get her hair done, go out for lunch with us last Friday and even make a short trip to Tesco with her son. Now she's at rock bottom, deeply depressed and scared. It's been an awful day.

I know the NHS is stretched to the limits and an oncologist is not responsible for emotional support but I drove home fighting my anger at the damage done to DD's emotions.

Maybe I'm just oversensitive. We're all scared.

gerry86 Fri 05-Apr-19 11:19:56

I think in some cases the more senior the more blunt and brusque some of them are, not all I would add. My daughter saw this when she was in hospital recently, luckily hers was brilliant but she saw the way some of the patients in the same ward were more or less dismissed by theirs and one actually told a patient he had others to see so didn't have time to answer her questions. I would certainly complain. Thinking of you, your daughter and family.

BlimeyORiley Fri 05-Apr-19 11:20:42

How dreadful for everyone involved. It really is bad enough without being treated with insensitivity. I have recently been diagnosed with metastatic breast cancer which is now in my lung, liver, rib and spine. I was told very gently, and not everything at once. My specialists have been sensitive and my specialist nurses and my GP have been supportive. It is hard to complain when in the midst of such desperate times, and you feel so vulnerable. You can contact PALS at the hospital and they will try and improve things for you both. I am so sorry for you both

TheOldDear Fri 05-Apr-19 11:20:55

Rather than making an official complaint, I’d be inclined to print out this thread and send it to the hospital. Or give it to the hospital’s PALS (Patient Advice and Liaison Service).

Minerva Fri 05-Apr-19 11:24:21

I am so sorry for you all Merlot. Life is unfair but for this woman to take away Hope is really cruel.

I would write to PALS and make a complaint. She is clearly in the wrong job.

GinJeannie Fri 05-Apr-19 11:26:45

I so agree with NanKate. Does the hospital have PALS patient advice and liaison? I understand your family's world has been turned upside down right now but a complaint might save another patient being spared this awful experience. Big virtual hug x

Annaram1 Fri 05-Apr-19 11:30:04

I am so sorry to hear about your daughter Merlot.
I am in agreement with those who think that you should send a letter of complaint to the hospital, asking for anonymity, and point out that some staff need training in bedside manners. Mention the name of the oncologist. Other people will very likely have received similar rude cruel behaviour from this highly paid oncologist, and they may have complained too. The oncologist may be used to seeing very ill patients with similar diagnoses but this does not excuse her/ his treatment of your daughter. All ill people deserve kindness and respect.
I do hope you and your daughter do not encounter such vile behaviour again, and I also hope that she will go into remission as so many cancer patients do, or even get cured.

Minnow0 Fri 05-Apr-19 11:30:18

I am so sorry for your news and your daughter’s illness. I too have had a relative given similar treatment by a consultant, left to drive home after being given an out of the blue terminal diagnosis. Yes the NHS are overstretched, yes the staff are wonderful but some consultants and I mean some, have become detached from being empathetic. I suppose if nearly everyday you are tasked with giving distressing news, it is an escape mechanism to save your own sanity but perhaps news should be given by a trained and sympathetic person rather than an consultant who may be brilliant at treatment but lacks that human touch.

LJP1 Fri 05-Apr-19 11:37:40

Copy your letter (anonymously) and put it in the suggestions box / hand it in in a sealed envelope for the admin dept.

Good luck and keep going. All sorts of ideas are being tried successfully now. Sign up to try something new!

Jette Fri 05-Apr-19 11:39:44

In my view you should make a formal complaint.I was told this by someone at PALS.She has a daughter with chronic illness and when they got to the hospital.if she is unhappy with the consultation she makes a complaint IMMEDIATELY

merlotgran Fri 05-Apr-19 11:40:21

Thank you, everyone. I'm reluctant to complain at this stage because for one thing I am no longer DD's next of kin. If it were DH I wouldn't hesitate.

I have DD's fragile emotions to take into consideration and as a fiercely independent woman she would be furious if I acted on her behalf. It's her decision and at the moment she wants to see how next week's appointment goes. I'm sure she will seize an opportunity to have a word in somebody's ear if there's a chance but any formal complaint would just cause her more stress.

anti Fri 05-Apr-19 11:41:28

My dear Merlot, what awful news for you all and then worst of all to be spoken to by the consultant like that. I realise they are rushed off their feet, but they should take into consideration the reasons why they are doing that job in the first place. Compassion and understanding is not difficult. I sincerely hope your daughter and yourselves get the best care that you all so rightly deserve. I have put my name forward to be an NHS volunteer back in December and waiting for news, I hope I can be that little help in the corner of a ward.

Charleygirl5 Fri 05-Apr-19 11:43:13

A friend of a friend asked if there were any trials going on because he had nothing to lose by trying but unfortunately there were none at that moment.

leyla Fri 05-Apr-19 11:47:05

Hopefully she is one of those whose terrible bedside manner is counteracted by her sheer brilliance at the medical side of things. I can’t imagine what a terrible time this must be for you and wish you strength over the coming weeks and months.
For what it’s worth I wouldn’t complain about her - you need her on side. Also you don’t know what’s going on in her life too. X

monkeebeat Fri 05-Apr-19 11:53:14

Receiving a blunt delivery of bad news from a time strapped consultant is awful. This is processing, not caring!
But. Where do you go from here?
I assume there is a speciality/Macmillan nurse involved?
Please contact them regarding, much needed, continuing holistic support for you both. If ever their specialised input was required, it is now.

driverann Fri 05-Apr-19 11:53:24

No Merlotgran. I don’t think you are being oversensitive. I worked in the NHS for nearly 40 years. In those years I met some wonderful caring doctors and nursing colleagues.
However I also met some who were an insult to the profession, they may have had the medical qualifications but some had no qualifications whatsoever in people skills or caring skills, just full of their own importance. Over those years I had seen some struck off and two serving jail sentences. I am so sorry to read of yours and DD experience. Thinking of you.

Elderlyfirsttimegran Fri 05-Apr-19 11:53:57

I also send my sympathy for the way tour DD was treated. My husband, many years ago had terminal cancer but the oncologists didn’t tell him so I didn’t know either. Then a GP in our practice let slip that he wasn’t going to live and I was left in the horrible position of having to pretend I didn’t know. We never said the things we needed to say to each other before he died during a treatment. Just a phone call to tell me he had died. I had 3 tiny children and it was awful. There has to be a better way between that and saying nothing and I thought doctors were now trained to handle this sort of thing truthfully but kindly. Obviously not.

SaraC Fri 05-Apr-19 11:55:43

Oh Dear Merlotgran - I’m so sorry it’s such a horrible time for you all just now. Yes, I can well imagine you are all scared by what the future holds. The only thing I can say is that it’s clear that your daughter will know that she is very much loved by you which is such an important, and wonderful, thing to give her just now. Do, though, take care of yourself as well - it must be an exhausting time emotionally.

Summerstorm Fri 05-Apr-19 12:00:11

Having had operation for bowel cancer 3 years ago followed by 6 months of chemo it has now appeared in my liver and a few weeks ago had that tumour removed along with my gallbladder and a hernia repair. The surgeons and oncologist have been great but the people I’ve found most helpful are the Maggie Centre. I’ve always asked that everyone to be completely upfront about everything, which they have been. Having said that I have one specialist nurse that kept telling me it’s all fine nothing to worry about and it very definitely was something ie liver tumour that was also touching gallbladder. You need be prepared to question things and that’s where the maggie centre really helped. I suggest contacting them ASAP

georgia101 Fri 05-Apr-19 12:04:00

There is no excuse for such insensitivity. If you have the energy I think you should write to complain about the appalling use of words that were used, and the devastating effect it has had on all of you. Just maybe it will stop this behaviour from hurting someone else as it has you. I'm so sorry for the sad situation you are all in and wish you a happier outcome than is anticipated at the moment.

Gingergirl Fri 05-Apr-19 12:17:42

A dreadful experience and sadly, not that uncommon. Of course, she will want the treatment they are offering her. As well, I’d encourage her (and anyone else close to her) to seek some additional support. She may find this from a complementary therapist...in any modality (that ‘speaks’ to her). They will have a different outlook and attitude. There is always hope.

Shalene777 Fri 05-Apr-19 12:22:44

Whilst the oncologist is not responsible for emotion a decent human being would have been more supportive and show compassion. I think their manners were seriously lacking at a time when you search for any glimmer of hope. If they are having a bad day they should leave it at the door when they see a patient. I do hope you can turn around your daughters deep depression, and that you do get some comfort and hope.

Theoddbird Fri 05-Apr-19 12:23:34

That was all totally uncalled for and I cannot imagine how your daughter feels. I suggest you contact MacMillon nurses. I have been told they are wonderful. I would also put in a complaint about how your daughter was treated. Sending love and peace to her xxx

Kim19 Fri 05-Apr-19 12:27:15

This is quite awful and I'm so sad for you and yours. I remember many years ago seeing a film where a very eminent specialist surgeon became a patient. His discovery of the lack of bedside manners and sensitivity at all levels of his profession so shocked him to the core that he became a tutor in this discipline. Seems this 'discovery' has remained unchanged. Happily they're not all like the oncologist you describe but my own friend has had similar experiences. Yep, so sad. My heart goes out to you and yours.

GabriellaG54 Fri 05-Apr-19 12:33:06

I too am sorry to read of your daughter's illness and her recent oncology appointment which fell short of reasonable expectations. I do think that it was more a case of it being really busy, as you explained, coupled with the stress of trying to remain positive when giving a prognisis.
I'm sure staff are mindful not to give false hope and seeing someone in an outpatient capacity gives less chance to spend time on explanations, than if she were on a ward where there are no queues.
Hopefully, you and your family can help your daughter gain back her positivity.
Very best wishes to you both and ? for a positive outcome. flowers

Mawee Fri 05-Apr-19 12:37:13

Blunt & Heartless. How would he like his DD to be treated like that.