Charlie Gard’s parents seek change in the law

[FeminismandWomensFights]

I just saw this in the Daily Mail:

www.dailymail.co.uk/news/article-6136369/Charlie-Gards-parents-vowed-boys-death-make-difference.html

It looks like Charlie’s parents are arguing to make it so you can change your child’s hospital if you don’t agree with what the doctors are saying. I have absolutely every sympathy with their position as bereaved parents.
I’m not sure how this new law would work though- the best interests of the child’s health are determined by their doctors. Parents taking on that role would be a very different set up to what we have now- which is objectively around prioritising the child’s interests. Sometimes these interests would clash surely?

If, as an adult a treatment you feel is right for you is not avaliable in the NHS but you can pay for it privately or access it abroad, it's your right to seek that alternative treatment
Except if you were unconscious or barely conscious and on a ventilator with the cognitive impairment they claimed those kids had you couldn't consent. It would still be a next of kin, be that partner or parent yet. Someone would still have to represent your interests and that - from an abundance of love over knowledge, isn't always you nok

*your NOK

Sleeping- only if that person had a lasting power of attorney do they get to make decisions about someone without capacity.

LPOA for health and welfare specifically.

I too have had experience of NHS covering other clinicians backs when I poor call has been made. (Ironically it probably wasn't obviously a bad call at the time, it was subsequent events and the failure to revisit the decision which was wrong)

Thankfully I have been able to get my child to alternative provision where the right decision was made and we ended the road to the right diagnosis. But only after a 4 YEAR delay trying to get round a "very well respected" Doctor's poor call.

That only happened because i was able to bypass the decisions of doctors who all knew each other in the same hospital.

I dread to think of the result if my child had been judged too ill to move by the same doctors who had made the bad call in the first place.

Absolutely must be law.

Some parents will never accept that their childs condition is incurable, its human nature to cling onto hope. If this becomes law at what point do we say enough is enough if parents wish to keep moving their terminally ill child from hospital to hospital in the vain hope of a cure, subjecting them to ever increasing invasive/futile treatments.
The welfare of the child should always remain top priority.
I cant agree with this law.