AIBU That Mumsnet won't allow any discussion on the Sally Roberts case?

[Zealey]

There's something about her that is media hungry - if she hasn't sold her story to a tabloid or glossy mag in the next week then I'll take it back. But more importantly, WHY is Mumsnet towers deleting any threads discussing the case?

@Edgar. Yes, in this particular case, if they act fast enough.
www.guardian.co.uk/law/2012/dec/20/neon-roberts-unproved-treatments-court.
Yes, I'm making a judgement on her. I don't apologise, I think she's wrong. However, please don't get me wrong, I have compassion and sympathy for the godawful situation she finds herself in. There but for the grace of god go I.

unfortunate cross-post there Olivia

Feel free to delete me, I am happy to leave the impression that I said something unspeakable to OP.

what the hell OP?? she didn't want the expensive treatment. That would have saved more money!!!

She is doing what she feels is the best for her son. I feel very sorry for her, and obviously for her son as well. It does sound like the side effects from radiotherapy are awful.

I remember watching a programme about children who were being treated for aggressive cancers ( I think it was Great Ormond st) and some of the treatments were devastating in themselves. They left the child with a chance of life, but not a life where they kept the same faculties as they previously had.

I have a lot of sympathy for this woman. She is facing some pretty awful decisions, some of which have now been taken out of her hands. I hope she gets the support she needs to get through what lies ahead.

Zealy - she hasn't received the money to fund "her new age belief". She has received it because so that she can take her case to the high court about an important issue of consent.

It's not just an important case for her, it's important because of the precedent that it will set or reinforce. It's an example of the legal system in this country working brilliantly because these are issues that need to be addressed and debated openly. I say this with no opinion & not much knowledge about this actual case - but I think it's the sort of issue that does deserve legal aid as the ruling could affect every parent who is ever in this horrible situation. Whether it's the parent who wants treatment for their child or the one who wants to refuse it.

i just [[
www.guardian.co.uk/law/2012/dec/20/neon-roberts-unproved-treatments-court read]] the link and it doesn't quote those stats.

"Media-hungry"? "Tax-payers' money"? Well, I'm happy for my taxes to go towards legal aid, because I believe, nay, know that justice can not occur in any judicial system, if people do not have equal access to legal representation.

Media-hungry, indeed. Yeah, having a seriously ill child is the new X-Factor. Everyone's desperate to participate.

Zealey: I was the original poster from yesterday....I had/have very similar views of how she has conducted herself in and out of court. I believe the judge was slightly politer than what we have been towards her.....but pretty much in the same spirit.

My thoughts are with Neon and the rest of his family.

(I think I'd best sign off before I get incoming again!!)

@FestiveDigest. OK, yes, you've taught me something there. Fair play. I was thinking it was just about this person that annoys me. But you have shown me the bigger picture and for that I thank you.

what it says is this "There was an 86% five-year survival rate for medulloblastoma for those undergoing radiotherapy treatments"

that does not mean this particular boy, and actually the treatment is a combo of chemo and radio

that stat includes adults

counting against him
1)second operation
2)he is 7
3)chemo didn't work

so stats very different i fear.

How can anyone judge this woman. She is in an imposdible situation.

My understanding is that her son IS going to die. Its about prolonging his life which is not always the best thing to do.

I have nothing but sympathy for the family.

You are welcome Zealy! I am massively in favour of informed consent & the right to refuse treatment. Obviously this case is more complex because it is not a case where an adult patient is refusing treatment so it needed to be heard properly. Unfortunately, this isn't one where anyone comes out as a 'winner' because both options are horrible in different ways.

Interesting link, Edgar.
I've been on so many threads on MN where people are violently opposed to homeopathy, and these threads have convinced me that I am right in my opinion.
I'm with Neon's father on this one, I do trust medicine, it saved my life from breast cancer.
I do agree though that she had every right to legal aid, she is fighting for her child's life.
And sadly, I've just seen on BBC news, she couldn't be interviewed (and why the Hell should she be) because she has sold her story to a tabloid.
I've seen her all over the news, I haven't seen the dad at all.
She sounds like a desperate woman, crying out for someone to listen to her

IIRC (don't have the figures to hand) the 10 year survival rate is significantly worse than the 5 year survival rate for medulloblastoma. So even if he's in the 85% (or whatever the figures are for his set of circumstances) that's a long way from guaranteeing he'll survive to adulthood, and in the meantime he'll have whatever complications the radiotherapy leaves him with.

From what she's said, though, she doesn't seem at this stage to be trading off possibly-shorter-life-without-radiotherapy-side-effects against possibly-longer-life-with-radiotherapy-side-effects. She is looking for a third option; I think she's desperate to find a way that he can achieve a long-term cure without nasty side-effects and is in denial about the fact that there just isn't one, not at the moment. I think the court had to find for the father under the circumstances.

I have to beautiful clever daughter.

Would I risk them dying rather than have them live with a degree of brain damage that meant they were no longer the children they were before.

Yes I think I might.

Had I found out they were profoundly disabled at my 20 week scan I would have had a termination.

I don't believe we have the right to inflict suffering on our children. In some circumstances the right thing to do is let them die.

Can we all take a moment to remember that our musings are other people's realities, either currently or in the past?

I've seen Sally Roberts being slated left, right and centre on many forums (not MN) and I wondered how many of those people have faced a choice like this. I feel for her and I feel for that precious little boy.

I don't quite get why so much talk about this as though Sally is the only relevant adult; dad wants the conventional treatment. His opinion & wishes matter as much as hers. My biggest sympathies lie with him. Is it just because he's got a willy that few are talking about what he wants for his child?

I judge her misplaced faith in alternative treatments to be faulty judgement on her part.

The rest is crud beyond words, I still have deep sympathy for her worries.

Let's all hope that Neon has a good response to treatment.

I don't think it is because he has got a willy I think it is because his position is by far the more conventional one and is the same as that of the doctors, the judge and the prevailing public opinion. Obviously her position is more controversial.

I was told last night I couldn't understand this as I "wasn't a mother".....

Hmm?

My understanding was that this wasn't about palliative radiotherapy - if it is I can understand why she wouldn't want it because at that point it is more about quality of life.

However if this is about treatment and possible cure then I don't understand her pov at all.

Whatever though I think she is in every mothers worst nightmare and my heart breaks for her, he looks like a gorgeous little boy