We all know about informed consent—or think we do. How often do we find out from a child or young person, free from parental pressure, how they want to be treated? No doubt those managing this month’s correspondent believed they were acting in his best interests, but the patient isn’t so sure.
Statistics from Altmetric.com
I don’t really want a brace.
Because I don’t really want to have to go though the procedure all over again.
Is it really necessary for me to have a new brace?
Yes I know my posture is bad but I have to live with it and I feel that if I have another brace then I feel that we are going backwards. We’re not looking into the future, we’re looking back into the past. I am now 20 years of age and I think I ought to have a say.
I feel that the brace did help me in the past but now it will not help my spine, I also think it will make walking more difficult for me because I will have more of a weight on my shoulders.
Also I have just started a procedure at the Hospital for Neurodisability. It is a privately run hospital for people with neurodisabilities and I have had one appointment there. I am going to have a Foam Carve Cushion, the reason being to help my posture as much as I can. I have already had the mould made for the cushion so, in that light, if I have a brace I will have to go though that procedure again which won’t make the staff at the hospital very happy, because they are in the middle of doing something with my shape.
I know you’re just trying to help but I feel that the brace is not the answer anymore, I will hear what you have to say but I am still against having a new brace.
I don’t really think Lydia wants to tie the straps of the brace or Guy or Hugo because I am now very busy and it takes time for either Guy or Lydia to take it off or put it on me.
I also don’t want it because if I am going somewhere special I don’t want to wear a brace. I feel that it will sit on my hips and will not do much for my posture; even if you put it high up it still won’t necessarily do any good to me.
I feel that I have got to the stage where I have to face things. I am a grown man and I am disabled, not to the extent that I can’t walk and I am in a wheelchair, but I have mobility problems and a posture problem. I feel that if I work hard on trying to sit up even though I know I will never have a straight back I want to be me and you can’t force me to have anything if I don’t want it.
I am also doing a lot of exercise and I really enjoy it—in fact I am coming to the hospital even though it means missing my class, but I think I will get the exercise from walking to x-ray and back about four times (I am not doing that), also doing my favourite form of exercise where I just relax and enjoy the feeling, that is swimming which I feel is great for me because I have found a pool where it is all the same depth and the water is warm (sorry it is not a public swimming pool, it is private and it is a club) with a spa steam room and sauna, called Cedars because it has a cedar tree outside in the car park.
The reason I am telling you about the swimming is that I feel in control of my body when I swim. When someone else swam I got out of rhythm and lost count and I had water in my eyes, but I got some goggles that made life easier, and Lydia found an old white belt made of polystyrene and I have it tied round me. I used to swim about 7–10 lengths but with it I can swim 21–41 lengths without stopping, and I really don’t want to have to have a hot brace on after my time in the pool.
I feel that I am fine as I am so I feel that it is not necessary for me to have a brace.