Actually IABU but what is reasonable here?

[Helenagrace]

My dd was born with one normal and one small kidney and has had no problems for several years. We went for a routine appointment today to plan a scan to check on her progress. We couldn't see her usual consultant who has usually been quite upbeat. The consultant we saw was awful. He was very negative, despite not having her scans or proper notes. He didn't even have a proper history. He launched into an explanation of the worst case scenario including surgery, dialysis, transplantation and dd not being able to have children - all while she was in the room. It was so fast I didn't have time to tell him to shut up or get her out of the room. None of this has ever been mentioned before except as outside possibilities. The furthest the other consultant has gone is to say that dd would need a few extra checks and scans if she had surgery, was ill or was pregnant. DD fainted and was sick.

I now have a frightened nine year old who thinks she is going to die. I am furious. No, actually I am beyond furious. He has robbed me of my right as a parent to control how much she is told, how she is told and when she is told. On top of her fears about dh being in Croydon this week I now have this to deal with. She is crying and I am crying. She's still awake at the moment and keeps asking questions about not having children and does surgery hurt.

What I want to do to this man is illegal. I cannot think straight at the moment.

WIBU not to tell DH until Friday when I see him?
Should I complain, knowing that it might affect dd's care?

I haven't the answers but am so cross and sad for you and for your poor little girl. I personally would be wiping the floor with the consultant but that may or may not be wise. Our family had a similar experience when Nanny was very ill and still it hurts; we did nothing as we had too much to cope with at the time and it wouldn't have changed anything had we acted anyway.

All I can say is that your DD clearly has a strong and loving mum and that I' sure that you'll see her through this with care and thoughtfulness. Stay strong, try to get some rest and comfort yourself and your DD with what the far better informed consultant has said in the past.

What a terrible, terrible experience for you both.

Don't tell your husband until he's home safe and sound. He doesn't need the extra worry and it will infuriate him.

Please put in a formal complaint. How dare he say those things in that way? Even if they were true (and how would he know without a full history?) what an awful way to do this, talking in front of your daughter in such an insensitive manner.

Poor you having to deal with the fall out of this man's behaviour.

Complain??? Too right you should! That was so out of order. Poor you and poor dd. Sounds like he had not even a trace of empathy and was very unprofessional. It should not affect her care at all and if it does you must complain again. Hopefully you will never have to deal with him again. xx

This is bloody awful. I'm angry on your behalf....what a total fuckwit

Yes, you should complain, it shouldn't affect DDs care, especially if this is not her usual consultant, and his actions today were simply unacceptable.

As to whether you should tell your DH, I just don't know, how would he feel if you didn't tell him? Would he worry too much and fret? Is that what you're concerned about?

i would ring the receptionist and ask for an urgent appointment with the usual dr, explain what happened and ask him to speak to dd, maybe he would make an excuse such as "my colleague didnt have the right notes, he thought you were somebody else?"

I was always under the impression that it is perfectly possible to live a full normal life with only one kidney providing you follow a healthy lifestyle.

I would find lots of success stories on the internet, and show them to your daughter to reassure her that she will be fine.

Do you have a supportive GP by the way? Perhaps you could have a chat with him/her and see if you could take your DD for an appointment where they could offer her some reassurance? Of course they're not the expert, but it might help your DD in lifting some of her anxiety

X posted- biddymammas's idea is probably better.

Things like this make me so angry.

What consultants have in academic brains, they often lack ten times more in sympathy, consideration and tact.

I would phone PALS and they will probably email or phone the department on your behalf. Thay have been very good when I have spoken to them before. That would get your point across to the insensitive git, show him that you are serious, but it would also mean that the complaint was indirect.

The care your dd recieves should not be affected because you have complained at all, but in your situation, I would feel more comfortable if someone else was doing the talking on my behalf.

That is really horrendous, and you should definitely complain. Your poor dd Agree that it might be a plan to have a word with her usual consultant and see if he/ she can reassure you both.

Some doctors seem to have no normal empathy. He should be pulled up for it. Hope your dd manages to get some reassurance and gets better soon. FWIW one of my friends is in the process of donating a kidney to her sister, so of course people can live a normal life with just one kidney.

Oh your poor DD.

Presuming he was just insensitive, you should absolutely complain, is he doing this to every kid who walks in?! It may be that he genuinely didn't know the distress he was causing, I'd play it that way, he needs to be informed of his mistake for future reference, it will improve his practice.

biddy's idea was a good one, though I'd probably write to your normal consultant first explaining what happened and that you would be very grateful if he could reassure DD then follow up with an appointment with him.

I didn't come across clearly there - you should complain if he was being malicious too, of course, I didn't get the impression from your post he was though, just bone-headed.

Thanks

You're all really helping. At least I don't feel on my own at the moment. A for you all.

Dh is phoning in a minute so I think I'm going to hold off telling him. If I do he'll be on the first train back up here and there's nothing he can do anyway. He'll be annoyed on Friday but he'll calm down. He has some very important work to handover to his client tomorrow and Friday so I want him to focus on that.

Good idea to try the other consultant. See my brain is so chewed up I can't even think of that. The GP idea is good as well - one of our friends is a partner in our practice and she's amazing. She'd be great with dd.

I'll investigate PALS. I used to work in the NHS up until 6 years ago and PALS always used to be a bit toothless but maybe they've improved. I don't want to be one of those patients who get a reputation for having complained. DD will need years of scans and checkups so I don't want to make it hard to get what we need.

I don't think the consultant was being malicious I just think he was being an idiot. DD is very sensitive anyway but he does need to understand that parents might want to control what their children are told.

Firstly, I do not think YABU. Secondly, DH has one kidney - one was removed when he was much younger than your DD as it has major problems. He is generally healthy. Sounds like your DD has had a nasty shock, with seeing a stupid thoughtless consultant, and is reacting accordingly.

If it were me, like you I would not tell DH until he got home (as he'd hit the roof). However, I would try to get hold of her usual cons and either get another appt, or ask him to talk to reassure her on the 'phone - if he has time, he may well do.

If your DD is anything like mine (& I'm espec thinking of your DD's immed reaction afterward), she will need several days of reassurance from you. It will be tough on you, but giving her that security of listening, being there and trying to answer her questions/fears is one of the best things you can do.

HTH

Firstly, YANBU. You control what is said and when.

BUT as a mother with a DS who has a serious heart problem (think open heart surgery at 2 yo, ongoing issues and further checks even though he is now 18 yo, etc, etc) your DD has the absolute right to know her own diagnosis and all the implications of this, as long as it is age appropriate.

You must hit the roof about the way in which the information was given, but I would also question why your DD was not aware of her medical issues at the age that she is. DS has a full, happy, active, sporty life as we have been able to factor in his issues.

Hiding or ignoring them will not help in the long term. Positive reinforcement of the non-problems will.

My daughter has kidney issues that are more serious but similiar and we have thankfully never come across such a dilbert. Charm your usual consultants secretary into getting an appointment asap, say you can attend at short notice from cancellations, or hang around at the end of a clinic etc, and get him or her to explain scan results showing nothing wrong etc.
However I do think this consultant didn't do anything wrong as such, tactless and gormless tho he may have been, but you should have shut him up immediately if you were uncomfortable with something.
I and my OH have often been ' assertive ' relating to our daughters various medical conditions and it has never affected her care. Don't be scared, and good luck !

Thanks for sharing your experiences.

We've never sought to hide dd's problem. She knows she has a dodgy kidney and she's known about the schedule of scans for years. Apart from needing to stay hydrated she doesn't really have any other needs. Her dyspraxia and dyslexia give her more problems.

The previous consultant had spoken to me privately about the (as she saw it) minimal risk of complications but this guy waded in with "obviously you need to be aware of the risks of renal failure, the need to remove the damaged kidney and the risks of dialysis and transplantation" or similar. He gave me no warning . We didn't talk about the possibility of those issues with dd as our usual consultant had thought the situation was stable and those complications were very unlikely.

I hope your DCs stay healthy.

Aw, poor little thing!

A friend of mine has only one kidney and has never had to do anything special for it or been told she can't have children.

What I suggest you do is to write down as much as you can recall of the conversation that took place with the locum? consultant - start at the beginning of a 'he said, I'said' account and keep it factual.

Once you've committed your account to paper, I suspect you'll be able to 'put it bed' for the night and pick it up again when you are able to discuss the matter (out of earshot of your dd) with your dh and decide what form of complaint you intend to make.

Please let your dd's GP know what has occurred and ask if s/he or a practise nurse can help reassure your dd that the quack she saw today was talking out of his rear end or, as has been suggested by biddy, that there may have been some mix-up with patient notes/names.

In the meantime, give your dd as much reassurance as possible - there must be some tales on the net of patients with similar ailments/experiences having positive outcomes that you can show her - hopefully involving proud mums of 1 or more dc - and it's never too early for a child to learn that adults, even medically qualified ones, can and do make mistakes.

I'd like you to know that I feel extremely angry on your behalf and also outraged on behalf of your dd. The doctor you saw today needs a serious pull on what is, and what is not appropriate, when treating young patients and if your dd is seen in a paediatric unit - shame on him.

Just a thought - could the 'consultant' you saw today be your dd's usual consultant's registrar acting in absentia while his senior is on holiday? If so, it is within your power to make sure he gets his bollocks put in the mangle by his boss - and please ensure the handle gets an extra turn from me and all of the other mumsnetters who will be similarly outraged by this insensitive dr. dickhead.

In respect of waiting until your dh is home before letting him know what took place, you have no choice but to keep your counsel until you see him because if he rushes home your dd is going to have even more reason than dr twat has given her to fear to worst. If your dh has an issue with you temporarily keeping this from him, show him this thread.

Finally, have a - you deserve a couple of bottles.

Should I complain, knowing that it might affect dd's care?

I spent two years whilst my son was under his consultants care thinking I shouldn't complain thinking like you it would make things worse. I will now spend the rest of my days blaming myself that I should have been more forthright complained more stood up for him earlier but I thought the consultant new better and let him do things his way. In the end I complained to PALS, my son's consultant has now been in front of the GMC and is not allowed to operate etc without supervision. Don't make my mistake stick up for your child and complain about him.

Apologies; "than dr twat has given her to fear the worst."

That doctor was totally out of order. Contact PALS, your DDs care will not be compromised by your complaint.

I should also say my mum has a degenerative kidney disorder that was diagnosed at age 9, she is now 54 and has 2 dc's, no op's and has only ever been monitored for it, she does have to avoid things like salt but other than that she is fine.

Without knowing her diagnosis and other medical problems it is impossible to say if this doctor was in error regarding her future - she may well be more at risk of dialysis, transplantation, renal failure etc. However where he was completely wrong (in my opinion) is in the manner in which he chose to discuss it.

I am assuming that he is not her regular consultant and hasn't taken over her care? Then it's not really in his remit to be discussing what-ifs that may or may not occur 10 years down the line, it's something which should be discussed a lot more sensitively with a doctor she knows and trusts. Way to go destroying a child's faith in her carers! I agree if there are implications regarding her lifestyle and future choices then she needs to know - but she's 9! There are ways of talking to 9 year olds and that's a prime example of how not to.

I don't know if this will help her, but tell her from me that she can live a normal life with only one kidney - or my definition of normal anyway. If one is small yes it may need to be taken out later but it's probably not functioning well (if at all) and if the other is normal it can take up the slack.

We take healthy kidneys out of people all the time (leaving them with one good one) for live related transplants and they are all ok.

You can also tell her that I was involved in the care of a lady who had had a kidney transplant during her subsequent normal pregnancy. Obviously she's a higher risk but it doesn't mean she'll die or never have kids, just means we might have to keep a closer eye on her! And if her diagnosis does mean she shouldn't have kids, the time to talk about that is years down the line.

She can do things to help herself - not take up smoking, try and get exercise, not be overweight - but they are lifestyle principles that apply to everyone :)

YANBU to complain and request that this doctor goes on a communication skills course.

Oh and please tell her that even if she does need surgery, there are lovely doctors called anaesthetists who will give her amazing dreams and make sure she's completely asleep so it won't hurt - and give her lots of painkillers so it isn't too sore when she wakes up in recovery.