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"Hernia Operation for our Autistic 8 year old"

About: Nuffield Health, Brentwood Hospital

My wife and I recently attended this hospital with our 8 year old Son who required an operation on a hernia in his scrotum. Our son is autistic and is incredibly aware of his surroundings and has high levels of anxiety in many situations. He has developed an acute fear of needles and the concept of operations. We were nervous about him having the procedure and made it very evident to the hospital staff throughout the consultation / scan process that he had severe anxiety and his reaction to the idea of an operation could be traumatic for him, us and even the doctors. However, in our opinion the Hospital failed to listen to our concerns. The consistency of understanding across the staff was poor. We had made it clear there should be no mention of an "operation". It had to be referred to as a "procedure". No-one listened. We had suggested gas and air as a method of putting him under. This was agreed on the phone and refused on the day. After arrival we experienced a very clinical process in which we were hoarded into the hospital via the reception / main entrance (he was used to the rear entrance and routine is key for children with autism) we were led to a comfortable treatment room. The failures were more stark and evident from this point. A nurse tried to numb his hands, but he pulled off the protective seal. Rather than put more cream on, she replaced the seal. So the numbing cream was failing. The anaethetist said we could give him sedation via a blackcurrent juice - what a relief. But then we were told 20 minutes later he wasn't old enough for this (how did they not know...). We were not given the right to decide on gas and air. The next attempt was a sedation medicine applied to the gums. The nurse left it to me, his dad, to apply it. The medicine did not work - he spat it out. At this point, unsedated, it was decided he would be wheeled down to the operating theatre. On arrival he was faced with a room full of needles on the side and equipment everywhere. He had another meltdown and was convinced they were going to kill him. In the end the doctors took the decision to take him back to the room and said they had lost his confidence and could not perform the operation. However, this was not before they thought maybe he was now a little sedated and attempted to put the canula in again before realising his hand wasnt numb enough (so left him screaming after pricking his hand). To top it all off, prior to leaving they then presented us with a pamphlet about how to help prepare your autistic child for surgery - thanks for that, but the horse had bolted. Maybe giving us this information 2 weeks prior would have helped, and maybe shown that you were taking his autism seriously. We were disgusted. Our priory experience with our younger Son who does not have autism was very good, but each child should be treated independently and this place felt more like a production line. Wheel them in wheel them out.

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Responses

Response from Nuffield Health, Brentwood Hospital 5 years ago
Nuffield Health, Brentwood Hospital
Submitted on 05/09/2018 at 07:40
Published on nhs.uk at 11:06


Thank you for bringing this to our attention, and for taking the time to speak with me about your concerns. It is always important for us to hear concerns so that we can fully investigate them and use the learnings to ensure that there aren’t similar issues in the future. I understand that our Matron has written to you to confirm receipt of your concerns and is carrying out a full investigation. Once this is complete, we will be in touch. Thank you again for your feedback and if you require any further assistance in the meantime, please do not hesitate to contact me on 01277 695 695.

Tony – Sales & Services Manager.

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