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?

You should definitely complain - drs sometimes need to be taught how to handle certain situations, so do contact the usual consultant and calmly explain what happened. This will help you and the consultant who needs to know how members of his team are behaving. And the consultant you saw can't improve if they don't even know that their "bedside manner" needs some work (to say the least!)
Do ask for an appointment ASAP to see usual consultant for re-assurance too.
As a positive story to share, my friend has had terrible kidney problems since birth - missed a lot of school through time in hospital, having to take lots of drugs and having several operations. She is mid thirties now with twin girls and 2 boys (all aged 5 to 9) and a PT teaching assistant position. Now, I have no idea how she manages all this - so a normal life is definitely possible.

Hope this helps a little.

Definitely complain using whatever means the hospital sets out - and copy your GP in.

I would also be asking for a follow-up appointment with the normal consultant to discuss your DD given that the information / prognosis from the other doctor was significantly different to hers/his previous advice, and that you would like to discuss this (without DD present). I did this once when I got significantly different advice from two doctors in the same hospital, it meant that they talked to each other and I got the information clarified.

Helen
Tell your DD about my mum. She was knocked over when she was 5.
She wasn't expected to live and she lost a kidney.

My mum was told the same things as your DD was. However she is now 70 with grandchildren.

She has always swam, danced and enjoyed a good party (still does!!)

As for you complain,complain, complain!!!!!

Hope your DH is ok

Complain. How awful for you and Dd. Btw I have 30% function in both kidneys due to taking herbal medicine years ago. I have one Ds and am pregnant with dc2 so my kidney function has not stopped me having kids at all. I am monitored and on bp tablets but fine. I was told if I needed a transplant I could have kids after this also. Hope you and Dd recover quickly from this rubbish experience! Some consultants are not v good at thinking about how they speak to patients.

Hi Helenagrace. I'm so sorry this has happened - absolutely shocking behaviour on Dr's part. Definitely complain - this shouldn't happen.

On a lighter note - my husband only has one kidney too, and only found out when he was in his forties. Has had no detrimental effects, and recently had his gallblader removed with no ill effects.

Wishing you and your family well.

Yes you need to complain - in fact you need to go utterly ballistic.

First write down the entire conversation, before you forget. Detail your DD's reaction and that of the consultant (was she sick and fainted while he was there? - if so, how did the idiot react?) Make sure they know how much she has been affected - her now unable to relax and asking questions about death etc.

Then PALS. You need to go in all guns blazing and make it clear, very politely, that unless action is taken, you will take this as far as it can go. His behaviour was utterly irresponsible. He needs to be made aware of this in order for him to alter his approach in future - if only to ensure for his own sake that every patient he has is not utterly panicked, angered and alientated as a result of being his client!

Then contact your own GP and consultant. Email them the conversation and let them know that you are starting a complaint, and request a meeting with your own consultant, as soon as possible. The idea that you have an emergency meeting to reassure her is a great one. There is no need to lie by saying he had the wrong notes either - the whole point of this is that this idiot 'consultant' was incorrect in what he said, by strongly giving the impression that your DD would suffer these effects from her condition. He gave a worst-case scenario that isn't backed up by the evidence of your DD's notes or her treatment so far. Your own consultant can thus reassure her completely by saying that this person was in the wrong - he was not talking of your DD's condition, he did not have your DD's notes, that DD herself can see from what has happened so far with her treatment and what is planned for the future that no, she does not need surgery, she is not in any danger.

I would not be surprised if your own consultant was also livid at this - essentially this locum has utterly compromised his treatment plan for your DD - as she is so young, a very conscious part of this will have been his gentle, reassuring approach, intended to foster her confidence in her treatment and how to handle it. This locum has trashed that, and has flat-out contradicted your own consultant, e.g. in his opinion on the effects on fertility and childbearing.

As for complaining compromising her treatment, I don't think you need to worry about that, as I'm sure you will most certainly not be allowing this consultant into the same room as her ever again!!

I hope your dd is feeling better this morning xx

Lots of excellent advice here already, but just wanted to say how shocked I was by your OP. How bloody dare he. I do not think care is ever compromised by complaining, so do go ahead. I am so sorry your daughter has been given this worry. If you can find a healthy adult with one kidney for your DD to see and speak to then I think that would be an excellent idea for reassuring her.

Complain, complain, complain. Doctors and the suchlike and clever, life-saving people, but sadly many of them lack compassion of people skills.
I was treated very badly during DS's birth and it resulted in severe PND and I wish I had complained. PLease speak up and make a fuss now or you will regret it later.

I would say something.

Dr said something in front of my DS (7 at the time) the day before I had his sister by EMCS about 'losing' her and made it quite clear that her dying was a possibility.

Cue years of him having bad dreams about us taking her out for the day and losing her, him looking after her and forgetting where he left her and him being ridiculously over protective of her to the point where he has questioned mine and DH's perfectly good care of her.

She's fine but that doesn't make any difference to the way he responds to her.

I would also speak to someone to get advice on the best way of supporting her now that she has heard this. We didn't and I think we should have done retrospectively.

Write a full and detailed letter of complaint. Send one to your consultant and one to the Paediatric Management of the hospital.

Children do need to have a good idea of their own condition, but it has to be age appropriate and in line with the thinking of the parents, especially if the parents are undertaking the majority of care. This doctor was wrong in his approach but also wrong medically. It was wrong for him to phrase it in such a blunt manner too, given that he was dealing with a child.

FWIW I gave up a kidney to DH, and only have one kidney. I am intending on having another child at some point in the future and have been told that nothing stands in the way of me living a normal life. Try and carry on with the previous consultants way of thinking, and I hope your DD is feeling better today.

Another voice of support - my Mum only has one kidney too and still had four kids. She's a perfectly healthy 64 year old woman. Stupid consultant upsetting a small girl like that.

YANBU, if a new consultant sees a patient they should consider what the other consultant has said and what a young child may or may not know about their condition.

And also AFAIK you can function well with just 1 kidney, so 1 and a smaller one shouldn't cause any problems? That's why people can legally donate 1 kidney on live transplant to matching family members - they wouldn't do this if they then had 2 patients needing care instead of 1.

My friend has PCKD, (the inherited one). Her dad has had a live transplant and has 3 kidneys now - 1 works, she has 2 kidneys one of which has 90 cysts. She takes BP pills as it is high due to the cysts/ kidney disease but she had 2 children, it was discovered she had PCKD during her 1st pregnancy. She is fit and healthy, has all normal creatinine levels etc.

I have to admit I cried when I read your post - my heart really went out to you but mostly a 9yo girl who has endured years of being prodded and poked but reassured she is doing well to then have fatality shoved in her face.

How awful for you - what an insensitive fool of a doctor! If you go through PALS your DD's care will not suffer. It'll just mean that the complaint will be correctly followed up and documented, and if anyone ever has a problem with the same doctor again, it'll be flagged up under Clinical Governance.

Meanwhile you have a right to request that all future appointments are with the other consultant, and reassure your DD that the worst case scenario is not likely to happen to her. She hasn't even had her scan yet, so the doctor couldn't possibly know what's going to happen and he was talking out of hisarse hat.

If it helps, feel free to tell your DD that I have worked for 15 years in a department that regularly scans children with poorly kidneys and they all have normal, happy lives. I don't think I've seen any who needed a transplant or dialysis. Surgery is rare - only if they are very unwell and it will make them feel a lot better. Most just have to keep having scans every couple of years to make sure they're ok. The fact that she has been fit and well for several years suggests that her one good kidney is managing just fine on its own and the small one isn't causing any problems. The scan should confirm this for you and if it's appropriate to leave well enough alone, that's what will happen.

As for him suggesting she might not be able to have children - that's downright irresponsible at this stage. It's very unlikely and not something she needs to worry about.

The National Kidney Federation has a very good website if you want some more useful information. I've found the appropriate page for you: www.kidney.org.uk/Medical-Info/kidney-disease/small-singlekid.html

I really sympathise, after a horrible consultation with a very rude doctor at QCH on Monday. I'm still mulling over what to do about mine but will probably write in, if not to complain formally at least to say I want her nowhere near the labour ward when I do give birth.

Please do get the other consultant or GP to talk to your daughter she's going to need proper balanced information and some help to deal with her fears. By the way I know anecdotes are not data but my cousin had the same thing and is now in her forties in good health and with 2 children.

A relative of mine was bluntly told he would never have children when he was 9, on the assumption he needed to know but was too young to really get upset about it (weird). It haunted him for years (in the event, medical advances inbetween times mean he does now have kids) and no one though to discuss it with him or counsel him about it.

Do write down all you can remember and then complain - it's only thanks to people complaining that communication skills are now taught in medical degrees at all (how much it helps remains to be seen...)

Some docs seem under the impression that it's vital to ensure the worst-case scenario is spelt out as soon as possible - possible over-reaction to previous accusations of being paternalistic and not informing people about their conditions - but there's still appropriate and inappropriate ways of doing that!

Formal complaint about the consultant. Put it in writing. Say everything you have said here and add any wise words from M-netters. He is dealing with children and should have a much better bedside manner. What a twit! Also talk to your ownj consultant and explain what happened and ask about all the new things he raised.

What an idiot. My FIL has only had one kidney since his early 20's he is now 70.

I'm sure your daughter will be fine. I hope you are able to calm her fears.

Just wanted to update and say thanks for your support. DD had a really bad night that night but is now a bit more settled.

I decided to write to the consultant, copying our usual consultant. I explained that I didn't wish to make a formal complaint and tie up valuable resources but I did want him to reflect on the impact his words had had on my DD. I explained that I felt that he robbed us of our right as parents to explain things in a carefully considered way at the best time for our DD.

I've had a phone call from our regular consultant (she actually called me from her overseas holiday) to say she wants to see DD as soon as she gets back.

She apologised profusely and said she would raise it in the clinical team meeting.

Thank you again for all your lovely supportive messages.

I am allowed to say a (very unglittery, ticker-free) Mumsnet rocks?

Good work Helenagrace!

It sounds like your dd's usual consultant is lovely, and that seeing her asap will help your dd immensely.

So pleased and hope your dd is feeling better now xx

dear op - what an idiot the other consultant was, your real consulktant sounds lovely - please do let us know what she says and does on her return from holidays, she really sounds like she may be able to make it up to your daughter.

Your poor dd and you! Big hugs x