"He has made my son feel worthless "

About: Queen's Medical Centre / Trauma and orthopaedics

(as a parent/guardian),

I am so upset with the way we were treated at the clinic at East Block by my son's consultant.

We went for my sons pre operation assessment. We had x-rays and bloods done, we had an appointment to see the consultant and the support person for my son. She was there to offer help to explain things to my son. We were taken into the room where the consultant was sat at the desk looking at my son's x-rays. The nurse asked us to sit down. I was sat next to my son on the floor as there was not enough room as 2 student or members of his team were there along with the support person, the nurse and me and my son.

The consultant never acknowledged us when we went in and when he did finally speak, he asked who I was, even though we had met before. He never once said hello to my son. He never really said hello to me. He just went into telling us all the bad things that could go wrong with the operation ie my son could be permanently paralysed from the neck down, he could lose the use of his bowels and there could be infections. There could also be risk to his life, he could lose the use of his legs. I was so shocked, even the support person seemed shocked.

I said my son was scared this morning now I think you have terrified him as he terrified me at what he was saying. He wasn't nice about it. He was so abrupt, but to say these things in front of my autistic son was in my opinion bang out of order. He never once asked how my son had been, had he had any pain or anything. He just went straight into telling me what could happen.

I asked him are you telling us this because you don't want to give him the surgery. He said he had to state the facts. I said well you told us the negatives so what are the positives. He said the operation is for cosmetic purposes only. I said but what about his organs being pushed to one side, would this improve? He cant bend over or lift, will this improve? He said no.

So I said how will my son benefit from the operation? He said as its for cosmetic purposes he wont have a hump on his back. I was so shocked. I said I would not let my son go through that. He seemingly blanked my son. Whether it was because he was autistic, I dont know, but I have never been treated that way before. He seemed so cold and heartless. I walked out of the room with the support person and I told her I never expected him to talk like that and she seemed to agree with me.

When I got my son home, he was very upset and wanted to know why the man didnt like him and why he was saying all the bad things that was going to happen to him. He told us my son's condition will not get any worse, even though when we first saw him last year only my sons top part of his spine was curved, now he also has a curve on the lower part of his spine. He says he has stopped growing now so nothing will change. I hope for his sake he is right, because if my sons condition does get worse, I will take the matter further. He never asked us any questions about how the scoliosis affects my son. My son turns blue and suffers badly in the cold. This could have something to do with his condition, but the consultant has never bothered to ask about any symptoms. He has so made my son feel worthless and me feel ashamed to have let my son go through that.

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Response from Nottingham University Hospitals NHS Trust

We're really sorry to hear about your experience, this is absolutely not how we want our patients to feel as a result of an outpatient consultation.

While it is true that major spinal surgery is a serious undertaking, with the potential for major complications about which patients and their families must be aware, we would expect that the a consultant would communicate these in an appropriate and empathetic manner.

We would be very keen to learn more about this episode and if you wish to discuss this further please contact myself at sue.arnold@nuh.nhs.uk.

Sue Arnold,

Matron, Musculoskeletal and Neurosciences (MSKN)

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Update posted by sadie123 (a parent/guardian)

Hi Sue I have sent you 3 emails,but yet,have had no respons.

I would like to know how to take action against the surgeon who said my sons body would not change and that he will not get any worse, after seeing my own doctor and being told that my sons body can still change until he is 25yrs old. I want to know why he lied and upset my son.

My son is even more depressed and is saying he wont see anymore doctors as they lie. It took all I had to get him ready to go to the hospital, his moods have been unbearable.

Update posted by sadie123 (a parent/guardian)

I am disappointed. I was told to reply to Sue Arnold at her email address, I have sent 3 emails and even put on here asking for her to contact me. Why say did she offer to help, yet never replies or attempts to contact me?

So disappointed with Nottingham Hospital, they are supposed to care, by the looks of it they don't, but my son is my life and I will have answers.

Response from Acting Patient Information Officer, Nottingham University Hospitals NHS Trust

We apologise on behalf of the Musculoskeletal and Neurosciences (MSKN) team that you have not received a response to your emails. The team have informed us that Sue is on annual leave and this may explain why she has not yet responded to your messages.

Please be assured, Nottingham University Hospitals Trust do take this matter extremely seriously, and we would like the opportunity to fully investigate what happened and take appropriate action.

Please get in touch with us at nuhcommunications@nuh.nhs.uk if you would like us to take this further.

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Response from Acting Patient Information Officer, Nottingham University Hospitals NHS Trust

Further to this, it has been brought to our attention that the email address for Susan Arnold in our original response was incorrect, and so she did not receive your emails. The response was posted on Susan Arnold's behalf and she was not responsible for this error. We apologise for any inconvenience or frustration this may have caused. We understand you have since been able to raise your concerns with the appropriate colleagues and we hope this matter can now be resolved quickly and satisfactorily.

Response from Queen's Medical Centre

This comment was originally posted last year. We are grateful that this relative subsequently contacted us to discuss their concerns, which were resolved soon after.

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