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?

linked to this on other thread - well worth a watch

Glittery- what an incredible story, you must be so proud of him.

Peterpan- it is more accurate and doesn't penetrate the surrounding tissue as deeply. This is taken from Kidncancer website: Due to their relatively large mass, protons have little lateral side scatter in the tissue; the beam does not broaden much, stays focused on the tumor shape and delivers small dose side-effects to surrounding tissue. All protons of a given energy have a certain range; very few protons penetrate beyond that distance. Furthermore, the dose delivered to tissue is maximum just over the last few millimeters of the particle

Protons deliver the dose differently to x-rays as Iwish says. I'm not sure that protons would be beneficial for a medulloblastoma due to the unusually large volume that gets treated in medulloblastoma.

The government agreed this year to fund two proton centres in the UK so in the future people that could benefit won't have to go abroad (in the past it was considered more cost-effective to pay for people to travel).

Sorry I should probably explain that with a medulloblastoma the aim is to treat all of the cerebrospinal fluid (ie brain and spine) as it may contain cancerous cells too small to see on a scan. Proton dose can be more easily 'concentrated' leaving normal tissue undamaged but with medulloblastoma the whole area needs to be treated anyway.

Glittery, thank you for coming on here. I'm not saying radiotherapy is a miracle cure and I'm really sorry about your mother, Murder, but it can be effective and I don't want people to be unnecessarily scared by what they read in the media. Sometimes the side effects can be horrible but for many patients they are unaware of them.

Congratulations to your son on his degree, Glittery.

HappySeven- Thank you for explaining, now I feel bad for suggesting it and being one of 'those' people!
Great news we will soon have some centres here though, will help so many people. I have a friend who just went to Texas for HIPEC treatment, I truly hope that is something available here soon too.

Zealey @MrsDVere, yes I know a fair bit about it thanks. My issue with the mother is that she having been born in NZ she has received over a hundred thousand pounds of UK tax-payers money through Legal Aid to fund her new-age belief in crystals and homeopathy - which is fine if you have the flu or bad back, but cruel and bordering on insane if you have a dying child. In this time of cuts think houw many lives that money could have saved? Doctors say with Radiotherapy NOW there is a 90% chance of survival, 35% without. Personal values are fine, but not when it threatens an innocent life.

Zealey I think you speak sense. The mother is wrong on 2 counts, firstly being a burden on our creaking public finances and secondly and more importantly inflicting her deluded beliefs on her child and endangering his life.

I know first hand of the damage this belief in homoeopathy can do. A friend died needlessly from an infected toe, she refused antibiotics and insisted on only using these treatments. Eventually the infection cause multiple organ failure and she died. A total waste. And such stupidity.

Don't feel bad, Iwish, I may be wrong and it might be a good idea. I just wanted to say what I did so that you know if it's not suggested that may be why. It's going to take a few years to get the protons up and running but it will be good to be able to offer it to all patients it could benefit - at the moment a panel decides on those proposed by their doctors.

I don't know anything about HIPEC but hopefully if it's a proven treatment it will become available. The NHS isn't as far behind the rest of the world as the media likes to think.

The point for me is not whether Sally Roberts is right or not - the issue is obviously not as clear cut as the 'I don't know that much about it but I wnt to spout my opinion one way or another' brigade want it to be.

The discussion about treatment on here is informative and I m sure no one objects to that.

The discussion is swamped by the smug, self satisfied and crass tone of those who simply want to slag off a mother dealing with stuff most of us can't begin to imagine.

Ugh.

Is Sally Roberts actually suggesting homeopathy as an alternative to radiotherapy? I've only seen that mentioned in the tabloids without any source. In court at least she seemed to be saying that what she wanted was time to research newer or more experimental treatments. She's clearly not in the refusing-all-conventional-medicine camp as she consented to the first surgery and to chemo; the point at which she objected was the point at which she thought the risks outweighed the benefits - which surely puts her in a different category from your friend, PessaryPam?

casey i dont think she is only wanting homeopathy etc either. She is wanting alternative traetments such as the proton yreatment and looking at taking him to a hospital in germany. It seems people have latched onto the word 'alternative' and assumed she wants to only use homeopathy and other 'woo' type treatments when i dont think this is actually the case.

And there is not a 90% chance of survival. People keep repeating that but actually i think its that there is possibly up to an 80% chance of him surviving for fuve years if the radiotherapy works but that was before the tumour recurred, i think his odds would be lower now?

Cassey, so the judge was wrong then?

From what I read and heard on the news the Mother wanted more time to research alternative therapies. I took this to mean alternative therapies to radiography. The medics advised there was not time for and the radiotherapy would have to be done immediately. And this is what the judge agreed with. That was my understanding of the situation.

"
Also - who is paying for her continued and persistent High Court appeals I wonder? It may be her, but I suspect it is.....yes - you guessed it - all of us."

and that is exactly what taxpayer funding is for - to protect individuals from being railroaded without due process of law

otherwise court would only have to be mentioned in order for an individual to lose against a trust/company/wealthier individual.

there is an important principle (that of parental consent) at stake , one that is important to all of us, and she is going to court for it.

maybe in the same situation i'd have done similar, maybe different - i can't know because like everyone else i do not know the exact details of the case.

we don't know how her son has been taking treatment. if he has been fighting injections, crying on the ward, having to be held down for medicine...some kids do. because they're kids and they don't know whats going on.

we don't know what type of tumour he had - the stats can be very different.

I think tbry said its a medublastoma? (sp)

Also this has come to court because the patents disagree, if both parents were saying no to the radiotherapy would the drs still have taken it to court?

Wrong about what, Pam?

@MrsDeVere, I'm sorry to hear your suffering. Would you have gone into hiding with your child against the advice of your DH and the whole medical profession sparking a massive police hunt, then sold your story for tens of thousands to a national newspaper, or would you have kept your quiet dignity?

Maybe she is going to use the money to fund treatment for her ds?

She also has another child to care for, neon has a twin sister?

She did what she did because she felt she had no choice. If the father agreed wirh the mum i doubt there woyld be a court case tbh. Its only because the parents cant agree that it has become a court case and the media have made it into a spectacle.

If my child was ill and i thought selling the story could help them in anyway then i would be bloody tempted tbh.

If as i think.is the case that her son is likely to ger very poorly and she can then use the money to help make him comfortable and to support herself and her family then good on her. I wish them well and hope neon responds well to any treatment.

Maybe she is going to use the money to fund treatment for her ds?

She also has another child to care for, neon has a twin sister?

She did what she did because she felt she had no choice. If the father agreed wirh the mum i doubt there woyld be a court case tbh. Its only because the parents cant agree that it has become a court case and the media have made it into a spectacle.

If my child was ill and i thought selling the story could help them in anyway then i would be bloody tempted tbh.

If as i think.is the case that her son is likely to ger very poorly and she can then use the money to help make him comfortable and to support herself and her family then good on her. I wish them well and hope neon responds well to any treatment.

Sorry, I haven't RTWT.

My understanding of it is that Sally Roberts didn't ant Neon to have radiotherapy in case it made him infertile/lower his IQ. I don't profess to understand radiotherapy or its effects but surely an alive son with no chance of procreating/joing MENSA is better than a dead one? :(

It's an awful predicament for her. She obviously believes in the power of crystals etc and is very wary of the effects of conventional treatments. She obviously loves her son very, very much. She obviously wants him to get well in the way that she believes in. Also, she must be under psychological stress. It's alright for us to mock and judge but we're not her.

I really hope he makes a full recovery. Glitter's story is wonderful.

zealey so this boils down to her being NZ born and using UK taxpayer money?? Shame on you.