Refusal of life saving care

hi, i just joined carers uk. I am a father to a son who has central Congenital Hypoventilation syndrome which means he does not breath when he sleeps. Its not sleep apnea. Every night is the same and every night it is life thretening after 20 minutes of sleep or aropund about. he must have a ventilator on every night. He has a carer every night. The problem is he is fighting against receiving the care he needs and refusing to put on his ventilator and pulse oximeter at times which puts him at high risk of brain damage, organ damage and death.
The carers are on their last legs with this andthey are scared, worried, nervous etc etc as sam will not follow any protocols.
I need healp to understand what the rights of the carers in these life threatening situations. What can they do?

Hi Scot,

You must be fearful for his future, dreadful position for any parent to be in.
Is he receiving free NHS Continuing Healthcare? Are they just carers, or qualified nurses?

How old is your son? Has he had a Mental Capacity Assessment? Best Interests Meeting?

Hi Scot and welcome.
Firstly I must say I have no experience and no knowledge. I am just speaking as a Mum and grandmother myself and others have the expertise.
My first reaction on reading your post was ‘that is one heck of a rebellion’. I don’t know how old your son is but my thoughts were he must be hating the nightly routine, thinking ‘why me’ and perhaps even ‘I don’t care if I die’. Is he old enough to benefit from counselling from someone who understands his condition and can give him some hope as to his future and something to look forward to? Someone who could help him understand the burden he is putting on his carers and you, without making him feel guilty? (Hard ask).
As for the carers. If they force him, are they guilty of abuse or heroes for saving his life? Their manager should surely have this kind of scenario sussed out legally. They should have clear instructions so they are confident in their actions. You too should know what they can and cannot do and perhaps you need to speak to someone who really knows the ‘rules’.
Is there a web site or charity for this condition? Is he old enough to e-mail other sufferers? I wonder if a meeting could be arranged with an older fellow sufferer who would be a positive example, just to show him it can be managed?
I’m so sorry if I am talking rubbish here. I see many people are reading and therefore sympathising with you and your son. Hard to know what to say to help because (in my case) looking after a very elderly parent isn’t the same at all!
Wishing you well

Hi, they are carers only. My son is 22 years old and had the condition since birth… He as had neither a mental capacity Assessment or a best interests meeting. I am in talks with social services, gp, specialists etc

Thanks Elaine, No you are not talking rubbish. Of course not. He is on a self directed support system which means he appears to be the employer. Even more dangerous!! If he cant do what he is supposed to do in terms of putting on his ventilator and pulse oximeter, how can anyone expect him to make sure that all other aspects regarding the employment of the carers correctly for example proper training etc. All correspondance regarding things loike that and of course given his mind set at the moment he can do what e likes with these kinds of subject.