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UK Channel 4’s recent documentary on Neon Roberts and his mum, Sally, You’re Killing My Son...The Mum Who Went On The Run was a travesty of half-truths, misrepresentation and subtle mainstream bias. Here, in an ANH-Intl exclusive, Sally tells her side of the story.
Neon was cancer-free prior to radiotherapy
It’s a fair bet that anyone watching the documentary or following Neon’s case in the mainstream media would believe that Sally abducted Neon to prevent him receiving ‘life-saving’ radiotherapy treatment for a recurrent brain tumour – “A time when he needed critical treatment,” according to Neon’s father, Ben.
The truth is somewhat different, as Sally explains. “When Neon had his tumour removed back in October 2012, it was deemed a total resection. Within days, they then said, actually we think there is a 1 cm tumour remnant.” As if that episode hadn’t been enough of an emotional rollercoaster, Neon’s medical team performed further tests and once more changed their minds: “The relief I felt when informed this was, in fact, just scar tissue, was enormous,” recalls Sally. “I thought the worst was over and that Neon was on the road to recovery. Alas, this was just the beginning of the unfolding nightmare.” This crucial fact – that Neon was actually given the all-clear after his operation – is entirely missing from the mainstream narrative.
In search of alternatives
“When I went away for those 2 days [another salient fact that’s been left out of the mainstream narrative],” continues Sally, “It was to get HBO [hyperbaric oxygen therapy] for Neon, as oxygen is a well documented support for the immune system. The witch-hunt and media circus that followed was overwhelming, to say the least.”
Sally chose the timing of their disappearance quite deliberately, to coincide with the end of a 42-day trial in which Neon was enrolled. “I thought that the NHS [UK National Health Service] would back off, as Neon would no longer be able to be part of their 42-day trial. No such luck. They gave him another MRI [magnetic resonance imaging] scan whilst I was in court, and what they previously had considered scar tissue, they now decide was actually remnant tumour...After more surgery, Neon would essentially be back to day 1 of the 42 days – so he could be put back on their trial.”
Neon just wants to hide away from the world in dens
Source: “You’re Killing My Son…The Mum Who Went On The Run”, Channel 4 TV
Kangaroo court
After Sally and Neon were apprehended following a nationwide manhunt, Sally went to court in an attempt to delay or prevent Neon’s surgery and any chemical and radiation-based adjuvant therapy. Her legal strategy was to suggest alternative medical treatments to the standard treatment being pushed so hard by the NHS – but, as Sally explains, it didn’t work out well. “Court was a total waste of time. I was not given the opportunity to present any other alternatives. Instead, they had me searching other countries for children who had medulloblastoma [Neon’s cancer] and survived without radiation. I had been informed studies were out there, [but] unfortunately we never found them for young ones older than 3 years.”
Proton beam therapy: A safer mainstream treatment
“It was, in fact, after court that I discovered proton beam therapy. I had someone approach me who had heard of the case and I spoke to the Professor in charge, who agreed that he would take Neon and that my son was a perfect candidate for this far less invasive treatment. [Proton beam therapy uses] protons, not X-rays, and causes less damage to surrounding tissue with fewer side effects. Strangely enough, this treatment will be used [on the NHS] here in the UK from 2018!”
NHS inflicts harshest therapy on Neon
The fact that Sally has been asking the NHS to consider a less destructive treatment for Neon, one that is accepted by mainstream science and the NHS itself, has again been largely obscured by the mainstream. Only the few who already knew, or those who bothered to do the research, would know that proton beam therapy is no fringe, alternative treatment. It is a highly targeted form of radiotherapy that requires very expensive equipment including particle accelerators. It is perhaps better classified as an ‘emerging mainstream therapy’, rather than an ‘alternative therapy’.
Sally’s interest in helping her son get the best and least damaging therapy available was portrayed in such a way that the majority of the public were left with the view that Sally’s main goal was to expose her son to unproven, ‘alternative’ cancer treatments of dubious effectiveness. Adding to Sally’s woes was the unprogressive nature of Neon’s consultants. Sally again: “I approached Neon’s lead consultant, who said there was no proof of what I was saying and blocked me from taking Neon [for proton beam therapy]. I then watched Neon deteriorate before my very eyes. Not from cancer, as that was gone; but [from] the harsh treatment they were using as a precautionary measure to ensure it did not come back.
“I tried so hard to appeal, but was knocked down from every direction, preventing me from getting it back into court. First time round, admittedly, I was in way too deep. I did not know much about cancer, but just knew what they were doing was very wrong. [But by] January, I had built a strong case, and know that if it had got back into the courts, I would have had a very good argument against the protocol being used on Neon.”
Biased portrayal
If you think this sounds like a completely different story from that told in the documentary, you’d be quite right. Sally is justifiably angry about how she was portrayed in the programme: “The documentary that aired the other night on Channel 4 was an infringement of my rights. I filmed with [documentary maker Sarah Burkeman] a few times over the Christmas period, but it quickly became obvious that she was siding well and truly with the conventional camp. I pulled out.
“The fact that she was a family friend of Ben, Neon’s father, also rang alarm bells. I did ask her to stay away from me and my son, but Ben jumped on board and helped finish the film. I never gave my consent, and I am surprised how they could screen it without my permission. The documentary did a good job of making me out to be bad/mad, Ben to be good and Neon to be living happily ever after...which could not be further from the truth.”
Media vs mother
Sally’s comments make it clear that the mainstream media has had a clear agenda throughout this episode. Entirely in thrall to orthodox cancer philosophy, they have deliberately fostered the impression that Sally is an ignorant, perhaps self-obsessed woman determined to press unscientific ‘quackery’ on her suffering child. On the contrary, and to put it mildly, the NHS has shown itself in this instance to be so mired in dogma that it cannot deviate from a predetermined ‘treatment pathway’ – even when doing so could enormously improve the quality of Neon’s later life.
The existence of a precedent in similar cases also raises worrying questions over the motivations of Neon’s medical team: are they more concerned with saving face than with saving a young boy’s future, more worried about preserving the integrity of their precious ‘standard treatment pathways’ than with preserving a decent functional level for Neon? And is the UK at grave risk of falling behind other parts of the world, such as the US, Germany, Switzerland and Japan, in its provision of progressive, effective and more targeted cancer treatments?
As of today, Neon’s treatment is ongoing. “According to MRI scans and lumbar punctures, which cause him a lot of pain each time, Neon does not have cancer. But his fourth cycle of cytotoxic chemotherapy has just started,” Sally tells us. Neon's full chemotherapy regimen involves cisplatin, lomustine and vincristine. “Neon was feeling okay until they hooked him up, but he had to hold back the tears as it makes him feel worse by the second.
“How confusing and frightening for a child, or in fact anyone, to be told you must do this treatment to get better, all the while watching and witnessing himself deteriorate. It makes Neon physically sick, his hair has fallen out and he finds it difficult to eat. He is frail, emotional, experiencing tinnitus and this is just the beginning. The short-term effects are nothing compared to the horrors of the reality of the long-term effects, which include damage of the DNA, possibly leading to more tumours. Many people also do not realise that often, people relapse not from their original cancer but because of the treatment. Blood supply is also affected, increasing problems with blood vessels resulting in the possibility of strokes in later life.
“Thanks to his treatment regimen, Neon is unstable, he's not beaming as the Daily Mail said on Saturday, and he's very sick, he's on anti-sickness medicine and he's very fragile...when you look at him and his co-ordination, he's just hiding away from the world,” she says. “He wants to always build dens around himself. It's very emotional.”
Missed opportunities
For Sally, one of the saddest aspects of the Channel 4 programme is the enormous missed opportunity that it represents: “The recent documentary had an opportunity to inform the public of how damaging the conventional treatments are and what the other options are. Sadly, this was not the case. What is needed now is a fair, balanced, wider representation of what is happening here in the UK. To think our immune systems and other proven, safer, gentler therapies could not do the same or much better job is naïve to say the least. Quality of life is an important issue here as well as parental rights. Let us have an open discussion/debate in the public arena, so once we [have] the true facts, we can make our own decisions rather than [having] them imposed upon us by others with vested interests.”
Call to action
- Don’t believe everything – or indeed, anything – you read, see or hear in the mainstream media, particularly as it relates to medicine and cancer, without looking into all sides of the issues first! The relationships between media and orthodox medicine are deep and complex, and include shared ownership, overlapping board members and advertising revenue. You could say that, with such relationships, bias is likely to be the norm, rather than the exception.
Comments
your voice counts
Oliver Dowding http://www.tonicattack.com/
21 August 2013 at 8:08 pm
What a shocking report, although I am not wholly surprised. Media manipulation is scary, as is the NHS approach.
What happened to enquiring minds in medicine?
Well done, Rob, for airing it. I will publicise as much as possible, and write a blog around it.
Ellie V
21 August 2013 at 8:23 pm
Hi Sally - our thoughts are with Neon and your family at this incredibly difficult and challenging time. Thank you for sharing your experiences with us publicly. There are bound to be others out there who are going through similar challenges, and hopefully this will help to give them some strength.It is so obviously clear that a shift in attitude is needed, and as a fellow parent, I find it horrendous that you have been treated so badly - and of the affects that this is all having on Neon, which sound heartbreaking. Perhaps through your experiences, and with the help of the people who are helping to support you, awareness can be raised, and change can happen.
Victoria Ford http://inspiringmetastaticbreastcanceradvocacy.wordpress.com/
21 August 2013 at 9:25 pm
There are treatments out there which are proven and which could save the NHS £millions! Cancer treatment is in the hands of people I have come to think of as 'Flat Earthers' after those who defended the paradigm that the earth was flat by victimising and destroying those who were more enlightened and knew that the earth was round. The are almost like the Inquisition with their zealous conviction that only they are right.
When I was diagnosed with Metastatic Breast Cancer (Stage IV and incurable) when I was 47 I was told initially that I had six months to a year to live and was told that the only treatment I would receive was palliative; in other words they were not going to save my life, because there is no cure. That was in January 2008. I already knew about some 'alternative' approaches and researched nutrition. I do some convention treatment (bone strengthening and hormonal treatment) but I have not had chemo and the only rads were to the femur that was badly affected by the tumour which resulted in a total hip replacement. I take Chinese Herbal Medicine, have acupuncture, take supplements and so on. These are my informed choices, but the NHS oncologist I first saw just rolled his eyes when I mentioned Chinese Herbal Medicine, so I don't even bother to tell them what I am doing.
Supposedly we have choices in the NHS, but there is no genuine choice especially when the patient is a minor. The treatments which Sally has chosen for her son are actually cutting-edge treatments that will become mainstream when the NHS remembers that patients are individual humans and not a hospital number and a statistic.
Louise Mclean http://www.homeopathyheals.me.uk/site
21 August 2013 at 11:01 pm
Sadly, it is very unsurprising. People who want to tell the truth about orthodox medicine and the lasting benefits of natural medicine, have their words edited out. Their only chance is if they are on air 'live' and then they must stay on message!
Brenda Johns
22 August 2013 at 12:24 am
I thought the Channel 4 programnme was very one sided and cast Mrs. Roberts in a very bad light when she was only trying to do the best for her son, and the justice system I find astounding. There are other ways of treating cancer. Reiki can be of great benefit.
Anonymous
22 August 2013 at 1:21 am
Are people making complaints to Channel 4 about this programme?
Jonathan Chamberlain http://www.fightingcancer.com
22 August 2013 at 7:50 am
I feel for Sally as I am myself involved with the family of a boy who might have found himself in the same situation as Neon if it had not been for the fact that a senior consultant agreed with the family that not doing whole body radiation was a perfectly reasonable decision.
I have co-operated with Connah Broom and his family to get their story out. The Amazing Cancer Kid will appear in October - though anyone interested in getting a review copy can contact me directly before then.
Their story echoes Sally's in that the most harsh treatments are imposed 'because that's the protocol' and not on any reasonable basis of effectiveness. Seven years after he was sent home to die Connah is very much alive and well using non-mainstream treatments. All but one of his original eleven tumours have disappeared. The doctors previously in charge of his treatment insist that although his recovery is inexplicable it was certainly nothing to do with the disapproved of approaches that he has made use of.
AussieHerbalist
22 August 2013 at 8:50 am
This is a terribly disturbing story and a violation of human rights. I take my hat off to you Sally! You are a courageous, intelligent woman who should never have been treated this way. I honestly cannot imagine how anyone could inflict this additional trauma to you and your family when you have endured so much.
Tamari
22 August 2013 at 11:26 am
JSymonds I watched most of the C4 film but I just couldn't handle the way Sally was portrayed as evil mother, I mean what Neon is being subject to is just so cruel, there are a whole raft of supplements that he could be put on that would alleviate what chemo is doing to him ,( there's a charity which momentarily forgotten the name of --- but it's bee set up to help kids like Neon by the people that run Bobby's Healthy Shop, I don't have all the details as the info is at home but maybe Sally could get in touch with them & possibly Ben could be persuaded to use the help they offer. I'd like to know the outcome of this advice should she get in touch with these kind folk). By the way I was absolutely appalled to see poor Neon eating carbohydrates which is the last thing he needs as this is just feeding the cancer at this point I was actually shouting at the telly!! Anyway I'd like to pass on a HUGE hug to to the poor kid & to Sally
Rodney Robinson
22 August 2013 at 12:19 pm
Reading this is so shocking. Sally is a very strong and brave woman for standing up for her son in the way she has. This shows what a dictatorship conventional medicine can be at its worse. My prayers are for the health of poor little Neon.
Paula Ferrant
22 August 2013 at 5:40 pm
Thank you Rob for airing this information, it is an outrage that the majority of people have no idea that this goes on. Sadly it does not surprise me. Society is based on greed and competition in the main. Hopefully all of us who read these words will pass them on in the hope that one day we will be heard and finally awareness raised that there are alternatives.
Sandra Courtney
22 August 2013 at 6:50 pm
A great article with the title "Homeopathy Fit to be Tried" in the Independent.ie in lifestyle/health, posted on 8/19/13, had more comments supporting homeopathy than against it. Unfortunately, the comments have been omitted and only the article itself remains. Censorship is not a good thing in any society.
johnadams3659
22 August 2013 at 9:08 pm
Until you have experienced for yourself the degree of prejudice and bias against most forms of alternative treatments within the NHS, it is hard to believe that otherwise intelligent and highly qualified people could act in such a partisan way.
Cmf
22 August 2013 at 10:08 pm
This article only reinforces the complete irrational and uninformed approach with which Sally approached treatment for her son: a fact reinforced by the courts decision to deny her wishes.
You appear completely unaware of the intricacies of a cancer diagnosis. Surgical intervention can remove a contained tumour but this does not rule out the very likely possibility that microscopic cells with the potential to proliferate still remain. Post surgical radiotherapy and/or chemotherapy is commonplace in a majority of oncology treatments to address this very issue. Surgery is not a be all and end all treatment as you misguidedly believe.
I am also concerned as to up your belief that proton therapy can be categorised under the alternative therapy umbrellas. Proton therapy uses ionising radiation and causes irreversible DNA damage in cancer cells just like radiotherapy.
I have been disgusted by the pseudoscience being spurted on this page. By all means adopt alternative treatment if you desire but utilising entirely unproven techniques when you are the responsible body for another's despicable.
Chris
24
Cancer patient
ANH Admin
23 August 2013 at 1:50 pm
Thanks for your comment, Chris – but did you actually read the article? We made it very clear that proton beam therapy IS NOT an alternative treatment: “The fact that Sally has been asking the NHS to consider a less destructive treatment for Neon, one that is accepted by mainstream science and the NHS itself, has again been largely obscured by the mainstream. Only the few who already knew, or those who bothered to do the research, would know that proton beam therapy is no fringe, alternative treatment. It is a highly targeted form of radiotherapy that requires very expensive equipment including particle accelerators. It is perhaps better classified as an ‘emerging mainstream therapy’, rather than an ‘alternative therapy’.” We’re not sure how we could have made the point more clearly.
Sally consented to surgery for Neon, and she was never against continuing treatment; she merely wanted treatment that might do less collateral damage. You may or may not be aware that there are increasing concerns about the use of long-term chemotherapy, because of the stress it places on the immune system (especially in relation to brain tumours) and the risk of chemoresistance. It’s estimated that 90% of drug failures in metastatic cancers can be attributed to chemoresistance: http://onlinelibrary.wiley.com/doi/10.1002/path.1706/abstract;jsessionid=076B6FD54B7C89142E9CFECBD4C933FE.d02t03.
Accusing a concerned mother of being “irrational and uninformed”, when she is clearly neither, does not advance the discussion one bit. And perhaps it would help everyone if you were to read articles more carefully before casting aspersions about a mother’s “despicable” behavior or “pseudoscience”. Proton beam therapy will become a standard treatment for specific types of cancer in England as of 2017–18: http://www.specialisedservices.nhs.uk/info/proton-beam-therapy, a fact that Sally Roberts has made quite clear in the media.
Sara
25 August 2013 at 11:13 am
Chris- Sally Roberts went to court to try to stop the second operation. she was legally and very publicly against it. why is this site reporting such rubbish?
ANH Admin
27 August 2013 at 11:53 am
Hi Sara, that's exactly what the article says: "“When Neon had his tumour removed back in October 2012, it was deemed a total resection. Within days, they then said, actually we think there is a 1 cm tumour remnant.” As if that episode hadn’t been enough of an emotional rollercoaster, Neon’s medical team performed further tests and once more changed their minds: “The relief I felt when informed this was, in fact, just scar tissue, was enormous,” recalls Sally. “I thought the worst was over and that Neon was on the road to recovery. Alas, this was just the beginning of the unfolding nightmare.” This crucial fact – that Neon was actually given the all-clear after his operation – is entirely missing from the mainstream narrative...They gave him another MRI [magnetic resonance imaging] scan whilst I was in court, and what they previously had considered scar tissue, they now decide was actually remnant tumour...Sally went to court in an attempt to delay or prevent Neon’s surgery and any chemical and radiation-based adjuvant therapy. Her legal strategy was to suggest alternative medical treatments to the standard treatment being pushed so hard by the NHS."
Lynne Hazelden
25 August 2013 at 12:58 pm
Dearest Sally, my heart goes out to you. I am grateful to find out about the Proton therapy via you!
"Proton beam therapy will become a standard treatment for specific types of cancer in England as of 2017–18: http://www.specialisedservices.nhs.uk/info/proton-beam-therapy, a fact that Sally Roberts has made quite clear in the media.
WOW, amazed how the NHS could get some GOOD publicity out of this if they just got their act together to show they are at the leading edge of things. Why do they shoot theirselves in the foot, take you to court vs be the heros for Neon. I feel very sad that he is 'having' to go through standard when this IS a choice. What is going on within the NHS seems to be a chaos of conflicting knowledge and held back by lack of 'new updated' modalities and distribution to professionals within it.
It seems to be the breakdown is, ongoing *required* eduction as part of qualification to practice via GMC rules to keep abreast of such things.. or lack of use of Medical Librarians who used to be a source they might turn to for ideas. Basically, an information breakdown. In your story, this becomes clear and the contribution seems to be that a break-through in this distribution of information to professionals is it. Could it be so simple, that the NHS would have a paradigm shift in sorting out its training , development and required training in new development by issuing a news bulletin that is required reading for each field and related specialist.. Hmmm. now there is a thought!
Maybe another element I would like to add to my campaign. The introduction of this?
Honestly, it seems heartbreaking that the media create evil and heroes for the sake of sensationalising tv. It is about time full accountability was also established. that if they present a case, it is a requirement to explore and represent all positions vs just one and research is openly presented unbiased.
As in my situation anything that is less invasive has to be precious information. Thanks for not just letting it not be challenged.
I have sent this to my own media contacts to see if we can get this on a more level playing field. I pray Neon can swap to the Proton treatment vs a year of the other, your heart must be broken.
much love,
lynne
Gillian
27 August 2013 at 8:59 am
Well done Sally! In those times when you feel down, know that there are many, many people around the world who applaud you for your courage in trying to beat these NHS and High Court bullies to save your son's life. That someone can effectively be stripped of their rights as a mother for daring to challenge the authority of the NHS is horrific. The documentary was laughably one-sided. It frightens me that women can still be treated this way in a country that is supposed to be anti-sexist. The (male) consultant, the (male) judge and the (male) father have told the world that Sally is a silly woman and the media is going along with that. Anyone who insists that radiotherapy or chemotherapy are the "cure" for cancer is ignorant. There will come a day when these "treatments" are banned because of the harm they cause. Allopathic medicine has only been around for a couple of hundred years. It is neither traditional nor conventional. How can allopathic medicine progress when it is represented by such closed minds? Sending you, Neon and Electra a big hug!
anonymous
04 September 2013 at 2:38 pm
A good web site for all possible treatment options mainstream and alternative is
www.canceractive.com
Also it is a good idea to remove the cause of cancer. One known cause is microwave radiation constantly emitted from cordless landlines and wifi routers. Any microwave transmitter should be replaced with cabled devices.
http://freiburger-appell-2012.info/en/home.php?lang=EN
www.wiredchild.org
Cancer and other diseases can develop in as little as 5 years of constant exposure from these devices. They are extremely harmful.
Rem
26 January 2016 at 12:27 pm
Dear friends,
I am absolutely shocked (not really in fact considering is not a big suprise what the system can do), but in fact really shocked by the media kitsch using arguments for the materialist sistem in a case that is not over yet and even it can be good, still biased and not completely researched. Has somebody said in fact that the medical system we use today has the roots in Galen the Roman Empire doctor and NOT Hippocrates?
If one thinks holistic, when the body starts producing tumours is definitely clear that such predisposition cannot be stopped by surgery or radiotherapy (only if luckily that was one off thing). Long discussion here. However, I was always surprised why the system shows mainly such things and NOT the famous cases they lost as well? At the end of the day I am not surprised that they did not want to wait a bit longer before concluding. At the end of the day, I wish all the best to the little one anyway. It is a shame that the media is distorting the principles of alternative therapies with or without knowing. If it is deliberate then I have no more comments, if it is by ignorance then the media is not free as it should be. They should have advisors that are impartial when they address such subjects that can ruin the health of mankind especially on a long term by not allowing nature to do its own things. What is Placebo? Self Healing? Then how in the world healing must take place in the first instance? Why are we alive? Because Placebo is keeping us alive EVERY SECOND!
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