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Neon Roberts: brain tumour boy must have surgery, rules High Court
Neon Roberts, the boy at the centre of a legal row over life-saving cancer treatment, must have more surgery to remove a brain tumour despite his mother's objections, the High Court ruled yesterday.
Neon Roberts will today have the operation to remove the half–inch tumour after doctors warned that he would die imminently without the surgery.
Mr Justice Bodey overruled objections from Neon’s mother Sally, 37, who argued there was not enough evidence to support the risky surgery amid fears he might be left mute.
While admitting that "no one could fail to sympathise" with Mrs Roberts and Neon's father, Ben, 34, the judge backed evidence from medical experts, who had warned surgery needed to be completed "extremely urgently".
Doctors did not have the "luxury of time" now, as the case’s numerous delays meant Neon now faced growing risks to his health, he told the court.
The group of doctors treating the "vibrant boy" at an unidentified hospital had warned the little boy would die within three months if treatment was abandoned.
Read the full story at the Telegraph website.
ANH-Intl Comment
When we reported on this heartbreaking story last week, a judgement had been delayed after scans revealed that Neon Roberts’ brain cancer (medulloblastoma) may have returned following a first round of surgery in October this year. The judge has decreed that Neon must have surgery, "In his best interests", a position his mother agreed with until the eleventh hour. It appears that she is unconvinced that his scan anomaly is cancer, and that the judge refused permission for her to obtain medical opinions from outside the UK.
Mrs Roberts is being implicitly blamed for her son’s condition by both the hospital trust and paediatric oncologist ‘Dr A’, who gave evidence at the Family Court hearing. We think it’s highly likely that, if Neon’s cancer has recurred, it’s strongly linked to the appalling emotional pressure the little boy has been under in recent months, rather than any lack of radiotherapy.
The team of doctors treating Neon all agreed that surgery was needed, according to the Telegraph article. We wonder, however, whether they ever provided Mrs Roberts with any evidence supporting this view, after her request for similar evidence in favour of radiotherapy was met with a single paper from the 1940s.
If you’re wondering why Mrs Roberts was even considering going abroad for medical opinions, the answer lies in the UK’s repressive cancer environment. Doctors are pursued and struck off by the General Medical Council (GMC) if they practice non-orthodox methods of cancer care, and increasingly treatment guidance of the sort provided by the National Institute for Clinical Excellence (NICE) is elevated to the level of a binding rulebook. Under such a fear-based atmosphere, it’s not surprising that Mrs Roberts feels that, "Doctors [in the UK] do not speak against each other"; they’re all terrified of a GMC kangaroo court or of not being sufficiently ‘evidence based’. Doctors who look beyond narrow official guidelines face less professional censure abroad, and hence are likely to provide a more independent view.
On a more positive note, we learn from an extremely well-placed source that Mrs Roberts and her solicitor, Imran Khan, have appealed the judge’s decision. A hearing is set for tomorrow, Friday 20th December, although it’s unclear whether this will have any effect on Neon’s surgery, which was scheduled for Wednesday 18th. Please join us in sending Neon your love and best wishes.
Comments
your voice counts
20 December 2012 at 10:28 am
I have my fingers crossed that the operaton - something Neons father is now fully behind - is a success for Neon and that the surgeons can prevent an unneccesary death.
I think the press and authorities have been fair to Mrs Roberts in acknowledging that she has acted in what she beleives are her childs best interests, but this does not innoculate her against criticism.
Statements from the ANH like this are however shameful:
"We think it’s highly likely that, if Neon’s cancer has recurred, it’s strongly linked to the appalling emotional pressure the little boy has been under in recent months, rather than any lack of radiotherapy."
As I pointed out previously, while the role of stress probably has some influence, no causal effect has been established and to suggest that this is the 'highly likely' cause of Neons current condition in the absence of evidence is highly irresponsible.
I also note from my previous post that the ANH thinks Hyperbaric Oxygen is one of many 'effective options' for Neons treatment. Where will I find the research papers to back this up?
According to the British Hyperbaric Association (a link you previously provided) it is usually used to help brain healing after exposure to radiation, something which Neon did not receive.
The evidence I can find suggest that Mrs Roberts, while well meaning chose a treatment which was not effective over the one recommended by doctors and now Neon's condition is critical. Its heartbreaking.
20 December 2012 at 7:10 pm
Hi again Slipp! In answer to your material points, can we refer you to our reply to your earlier comment on this topic, for clarity on our wording that that a cancer/stress link is "increasingly being recognised" by the mainstream. We presented hyperbaric oxygen therapy in the context of Mrs Roberts' chosen alternative, with a link to positive information from a mainstream source (Macmillan). We think that, as a mother, Mrs Roberts' concerns about Neon's treatment are natural and justified and that hyperbaric oxygen therapy is one good option, out of many effective alternatives.
You can find quite a few papers on hyperbaric oxygen therapy and cancer on PubMed: http://www.ncbi.nlm.nih.gov/pubmed?term=hyperbaric%20oxygen%20cancer.
21 December 2012 at 3:12 pm
Thanks for the response, although I would note that the search you have provided contains mainly irrelevant information about conditions not relevant to this case.
I cannot find any paper which suggest the HBO therapy has been shown to have efficacy in cases such as this. I also cannot find anything which shows that this is a viable alternative to radiotherapy.
The Macmillan page is a good source of mainstream information and it clearly states that HBO therapy 'may' reduce cancer growth but that research is ongoing. It is not a recommendation to use it as an alternative treatment at the current time, although this may change in the future. There is nothing to suggest that HBO should be used beyond its role in assisting the brains recovery following radiotherapy.
I have written to Macmillan and asked them for their views on your interpretation of their web page.
Its worrying that the ANH seem incapable of reading and interpreting sources correctly, and it seems rather hypocritical that you criticise the doctors for not producing robust evidence for their intervention and then advocate using what you call 'good alternatives' which themselves do not have a good evidence base.
I'll ask the question more directly to avoid your wriggling - what evidence is there that in this case HBO therapy is a good alternative to radiotherapy?
You've asserted it, lets see the evidence.
04 January 2013 at 12:33 pm
Hi Slipp. We feel the discussion has gone off the rails somewhat! We’ve never proposed that HBO therapy alone should be used in place of radiotherapy; our original article simply reported Mrs Roberts’ choice of HBO therapy, and our answers to you and Anonymous placed HBO therapy as just one aspect of a multi-pronged approach targeting the endocrine, immune and nervous systems: “One good option, out of many effective alternatives”. We apologise if that wasn’t clear enough in our answers, but we have no intention of engaging in a circular argument.
In which case, the relevant question becomes: what are possible alternatives to radiotherapy for treatment of medulloblastoma? We might suggest that the evidence points to proton-beam therapy – currently outsourced by the NHS to three international centres, http://www.specialisedservices.nhs.uk/service/proton-beam-therapy – as being more selective in its action than whole-brain radiotherapy. If proton-beam therapy was integrated alongside immunotherapy of some kind, it would, in our view, almost certainly be preferable to radiotherapy alone.
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