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?

I find their aim misleading- in the Gard case they didn't just want to change hospitals, they wanted to bring their son to America. The Evans' wanted to take their son to Rome. In both cases they only conceded and sought to move to a different UK hospital when they accepted there was no hope, by which stage relationships had completely broken down with the hospital staff. That move still wasn't in their children's best interests.

I don't think that parents should be able to compel their children to undergo a stressful and hazardous journey (either within the UK or further abroad) when professionals are united in their views on prognosis and treatment.

Oh no. This is going to be messy.

Poor parents, I guess they still don't really quite grasp how dreadful their son's condition was. And, poor staff, if this goes to court they're going to have to deal with it again.

I hope the Gards get a lawyer who can gently help them understand that no change of hospital would have improved outcomes for any child in Charlie's circumstances.

The Mail says the aims are:

Charlie’s Law would compel hospitals to offer mediation with parents to resolve disputes before resorting to courts.

This is a good principle but there will always be exceptions- and not all parents want realistic options for the child- and after a point mediation is not going to be helpful or timely for the child. Then compelling mediation would be wrong. Rather than waste time doing mediation, someone needs to take over in the child interests if parents and drs can’t agree - that needs to be the court. As would already happen now

It would also force the Government to provide access to clinical ethics committees to advise doctors and parents on life and death decisions. And most crucially it would empower parents to seek treatment elsewhere.

This is a bad idea. The clinical best interests of the child are what matters. Going from hospital to hospital at the parent’s behest seems unlikely to benefit the very ill child. Rarely would the most appropriate form of treatment or end of life care for the child be anything an ethical determination can help with. That’s a clinical decision.

Disagree with the ethicist cited in Daily Mail saying that CG case opened up any new ethical issues in the case of the treatment of CG. It really didn’t, unless you think only parents should make decisions about children’s care, including palliative care, where they disagree with the medical team.

“Charlie’s Law would compel hospitals to offer mediation with parents to resolve disputes before resorting to courts”

Well surely hospitals are already doing this? Court is an absolute last resort and happens rarely because of this.

It’s a very sad situation but ultimately I disagree with them. It’s very sad how the relationship with the hospital broke down and my heart really truly does go out to them for losing their son. But I agree with the law how it is and I don’t think they should be putting their energy into this now.

I'm surprised by how strongly I feel against this proposal.

I was pregnant when the CG case was happening, so although I disagreed with the family's decisions, I thought I maybe just didn't get it yet and expected that to change when DD was born.

When it came to Alfie Evans, I still hadn't changed my thinking. I know that the love I have for DD would blind me to critically consider what would be in her best interests in a situation like the Gards and Evans families had to handle. I would NEED someone who was knowledgeable enough but also not personally invested to help us decide what the best course of action would be, they should not be beholden to me agreeing with them regardless of what was in DC's interests.

I think it's a bit daft to ask for a mediation ore court as part of this- they already do this. There are multiple multidisciplinary meetings where they try and get everyone on the same side- court is a last option.

Mediation?

You can't negotiate yourself out of a shitty situation. Harsh, but, true.

The focus has to be 1.wellbeing of the child, 2.hand holding of the parents.

Grief is mediated by knowing that everything possible was done, and was done well. If you don't believe that was done, well, that must be agonising. I'm desperately sorry for these parents, and, I'm very glad I have no idea about how they feel, but, FFS.

Mediation happens every day, all day in hospitals, they do it well because, sadly, this is bread and butter work. This was a wildly different set of circumstances that exasperated every single intervention, treatment, flowchart, protocol and bit of common sense.

I'd be very surprised if there was a benefit to this going through the courts.

"It's okay if we don't cause significant harm, never mind their best interests" is what their aim actually is. They want the best interests test switched to significant harm. Very alarming.

In Charlie's case, the doctor they wished to send him to had never bothered to review him in person - if he had, and was willing to actually discuss his trial and preliminary results with the people involved in decision making for Charlie right back at the time of diagnosis, we might have never ended up hearing about anything to do with this case. Instead he strung along vulnerable parents and kept pitting them against Charlie's doctors.

Additionally, no other UK hospital was willing to take him, as said in court. Mediation could never have solved that.

It would be a bit rich calling it Charlie's Law given that such a law would fuck over vulnerable children like Charlie.

This would open up desperate parents to exploitation. Just think of the pressure - you now have the right to take your child to another hospital, hospitals all over the world start offering miracle cures, you feel compelled to drag your dying child around the world in case the next snake oil merchant has the answer. Hideous.

i am on the fence on this.
sometimes a hospital cocks up so badly that a new one might solve things.parents should have the right to move their baby to a different hospital in the uk imo.

When my fragile baby was moved about 45 minutes by ambulance to a different hospital, it took hours to load and umoad him and a day for him to recover. He had to move he needed life saving surgery. But it was flipping awful. We couldn't go in the ambulance in case he crashed. We were told of the ambulance pulled over to keep going.

Imagine that being a 12 hour journey involving ambulances and planes. Every 5 weeks becuase the hospitals wouldn't hay this same thing.

Is that really what's best?

Hope you were happy with your wee ones treatment and that things are more settled now, Sleep.

Blimey Sleep how awful.

I do think this proposed Charlie’s law can’t be good for very ill children or even good for their parents (who are the ones this all seems to revolve around )

KIDS, the ambulance service they use are amazing. Our hospitals fought very hard to save him.

We had another transfer 6 days later to another hospital and that was tough but not AS bad as he was slightly stronger. Had an op and transfered back via both hospitals with very little drama because again he was stronger.

It was awful and I knew that if he crashed, the ambulance would stop but we were to carry on, and he could arrive to us having died en route in someone else's hands.

He's 3, he has some complications - long term o2 and feeding tube but man is he cute and smart and brave. He's my hero!!

Sleep to you and your little one. So glad to hear things are better for him these days, though I’m sure it’s still tough.

Thank you xx

parents should have the right to move their baby to a different hospital in the uk imo.

But, unless it will cause harm to the child, they do. The patients in the paediatric ward aren't chained to the bed. They are free to seek a second opinion or move.to another hospital, ^as long as such a move wouldn't harm the child or put them in danger. Moving Charlie would have caused him pointless suffering, which is why GOSH were not willing either to endorse it or provide the medical staff needed for it. No clinician would stand in the way of parents taking a child to another hospital provided they could do so without harm to the child. Hell, do you not think that GOSH and Alder Hey respectively would have been incredibly relieved to transfer Charlie and Alfie?

What Charlie's parents want is for a parent's emotional needs to be placed ahead of a vulnerable patient's wellbeing. I feel for them, but hard pass on that.

The conspiracy is that the hospitals refused a move because another hospital could have found a cure and then they'd have looked stupid. Obviously nonsense but it's hard to argue with their utter conviction

It’s the MP’s that are supporting this that I’m frustrated with- the Gards are trying to make sense of the fact they’ve lost their baby son, those politicians are just cynically eyeing the support that both families’ campaigns gained during the childrens’ illnesses.

The thing is, the NHS don't offer all avaliable treatments. 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.

Should it not also be your right to persue alternative treatments for your children.

As long as the hospital is repatuble and the treatment is proven, and an independent doctor approves travel, I don't see why it shouldn't be the parents right to chose.

As the world gets smaller, the NHS budget gets tighter and technology advances, this sort of scenario will become more common.

I think the issue is children can't consent to a high risk transfer for high risk treatment.

The thing is, the NHS don't offer all avaliable treatments. 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.

Should it not also be your right to persue alternative treatments for your children.

If there was a genuine, proven treatment available abroad that the family could pay for, no UK hospital would stand in their way. This already happens all the time - children with rare cancers being treated in the US, say - and doesn't need a change in law to make it happen.

Charlie's case wasn't about the NHS not funding this particular treatment; the therapy his parents wanted had in fact been investigated months earlier by the hospital, and deemed to be futile given the degree of brain damage he had already suffered. If there had been even a small chance of success at that stage then the NHS would have paid for it.

If there was a genuine, proven treatment available abroad that the family could pay for, no UK hospital would stand in their way.

Was it Asha King who's parents had to kidnap him to get proton beam therapy in Spain?

I agree that there was no hope for Charlie, but I'm not confident that the NHS don't and won't stop parents seeking treatment elsewhere. I say this as someone who has a child with complex health needs and have experiance first hand the NHS making decisions based on covering their backs rather than what's best for my child.

The thing is, the NHS don't offer all avaliable treatments. 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. Should it not also be your right to persue alternative treatments for your children.

Again, it already is. It happens all the time. No hospital is going to stand in their way, unless the judgement of a medical ethics board is that a move is a risk to the child.

The Ashya King case is not a case of this, although the Kings have successfully been able to present it as though it is. The NHS already funded children with brain tumours to travel for proton beam therapy when the case went to court, but Ashya's parents decided that proton beam therapy offered less chance of side effects than radiotherapy, which doctors did not agree with. A review of the case post hoc found that they had reduced his chance of survival by 30%. He's currently free of cancer in spite of their actions, not because.