Published on 12, July, 2020
Dear all,My Son George is 17, severely autistic, non-verbal and with oral and nasal sensitivities.He needs an operation to remove his toenail, when we went into hospital we had a terrible time. He refused to take a pre-med due to its smell and taste, the medical staff tried to restrain him and administer this through a syringe. He is 6ft + and is 17 stone, so through his panic, we couldn't manage to restrain him. They then tried gas, but George refused to have the mask over his face and became very distressed off the back of multiple failed attempts. In the end, we had to abandon the procedure and is now traumatised and obessesively re-living the event. He definitely needs the operation, so I need advice from anybody who's been through this.Thanks, Lisa.
And in many situations where staff are unsupervised and think they can get away with it. They openly abuse and neglect vulnerable patients.
I have seen it first hand in NHS hospitals.
Yes I am.
And these codes and laws are there for good reasons. But in some situations such as here they become impractical. And there is a need for common sense.
Codes of ethics etc are there to protect vulnerable patients like this. Are you familiar with the Winterbourne View scandal???
I agree with this advice. It doesn't sound like there is an issue with legal consent and I don't think that you can overcome these issues with force. I think that he needs to be told that the procedure may hurt but that he can get through it. He may well have sensory issues that mean that it will hurt him more than it would hurt most other people. He will also not be able to rationalise away his rational fear of needles etc.
Perhaps he could have a specialist nurse visit him at his home where he can experience an injection (just saline) on its own and learn to manage each of the issues step by step. He shouldn't be told that it won't hurt because that is not what he will experience. He should be told and be reassured afterwards that it will all be over and that it will stop when it is done.
Lisa, your son needs to have legal document that allows you to make medical decisions for him so you can act on his behalf. I suspect you need to discuss this with a lawyer As he's non verbal then I'm surprised this hasn't been addressed before.
Also, your son could be given a mild oral sedative before even leaving the house so he was relaxed, but you would want to check he responded to it normally, some neurodiverse individuals get hyped up on these drugs. Speaking to an anaethetist would help in this area.
Last of all, ask if it can be done in his GP surgery. Hospitals are a sensory nightmare and sometimes things like removing toenails can be done as outpatient procedures under sedation
Hi
We have been in a very similar situation with our 19 yr old severely autistic son who couldn't cope in this situation.I made some enquiries and was told to ask for the lead nurse in learning disabilities at the hospital,which I did.she was fab couldn't do enough, her job was to help families like ours through this tough time. So I strongly advise you to contact the hospital and ask to be put in contact with the disability nurse.
Best wishes
You have my sympathy but not any practical advice.
The problem is that officially medical staff have to follow codes of ethics and laws regarding privacy and respect of patients rights etc. Unfortunately this means that practical matters take a back seat.
Your son needs to be restrained and sedated against his will. But this leads to legal complications. Eventually you will find a way to get him his operation. But you need to talk to doctors in advance and give permission for him to be sedated.