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By Adam Smith

Science and communications officer, ANH-Intl

The case of Neon Roberts in the UK once again highlights a disturbing trend for national governments to act as mainstream medicine’s enforcers. Are we headed for a future where parents cannot choose the treatment they think is right for their children – a true medical tyranny?

“You have to fry the whole brain”

The latest parent to face this agonising circumstance is Sally Roberts, mother of 7-year-old son Neon. In October this year, with the permission of both his parents, Neon had an operation to remove a rare brain tumour called a medulloblastoma. Mrs Roberts agreed with doctors that her son should receive postoperative chemotherapy, but drew the line at radiotherapy after being told that, “You have to fry the whole brain” with radiation to prevent the tumour from recurring. She was also worried about the recognised side effects of this type of radiotherapy, in particular mental capacity and sterility.

Unable to agree the next step with Neon’s estranged father, Mrs Roberts didn’t take Neon to his next two hospital appointments, which resulted in the UK’s National Health Service (NHS) serving her with an emergency order that Neon should be treated ‘in his own best interests’. 

Enforcing doctor’s orders

At this point, Mrs Roberts decided to take matters into her own hands. She fled with Neon to a centre that specialises in hyperbaric oxygen therapy. “It made sense to do something that would help Neon – oxygen therapy has been shown to help the brain heal,” said Mrs Roberts.  “It’s not quackery.” Yet this concern for her son’s wellbeing brought down the full wrath of the UK establishment.

Immediately, a High Court judge waived existing rules over press reporting of similar cases, thereby allowing Neon’s identity to be revealed in newspapers and other media. Not surprisingly, Neon and his mother were quickly tracked down. Four police officers made an early-morning visit to the friend’s house where they were staying. After being examined by doctors – who found nothing wrong – Neon was removed from his mother and put into foster care. He was later handed over to his father.

Tragedy upon tragedy

After a weekend hearing at the High Court in London, Neon’s future treatment has yet to be decided. But in the cruellest twist imaginable, new scans have revealed that Neon’s cancer may have returned – and if this is the case, Mrs Roberts will consent to her son having radiotherapy. It's long been acknowledged in complementary/integrated medicine that emotional stress is a vital contributory factor in the development of tumours, a fact that is increasingly being recognised by the mainstream. It beggars belief that the UK authorities have paid no heed to this, creating so much trauma and stress for a vulnerable 7-year-old with no apparent thought as to the consequences. If his cancer has reoccurred – and we dearly hope not – it’s highly likely that the extreme stress of the last couple of months will have at least played a significant part in the recurrence. 

Understandable concern on both sides

While being terribly sad, the Neon Roberts case also holds a mirror up to society. Presented with every parent’s worst nightmare, his mother appears to have taken a sensible look at the evidence for and against radiotherapy and come up against a wall of medical bureaucracy at its unfeeling worst. Mrs Roberts is aware that, “Giving radiation therapy is the standard protocol following the removal of a brain tumour”; she is also aware that, “Not all hospitals automatically give follow-up radiotherapy to patients who have had brain tumours removed”. Since Neon was, “Cancer-free and his cerebral spinal fluid was clear,” following his operation, his mother felt justified in seeking out other options. And although he agreed with the doctors about radiotherapy, the boy’s father admitted in court that he was “concerned” and “anxious” about the medical advice. Neither parent appears to have acted out of anything other than concern for their son.

State versus worried parent

So what’s actually going on here? A paediatric oncologist who testified at last weekend’s hearing, known only as ‘Dr A’, provides a clue: “I believe we should treat on the best evidence. This treatment is backed up by national guidance, and I don’t deviate from the national guidance.” While radiotherapy is part of the medulloblastoma treatment pathway recommended by the National Institute for Clinical Excellence (NICE), the tenor of Dr A’s remarks make it difficult to disagree with Mrs Roberts’ concerns that, “I didn’t feel Neon was being treated as an individual, but that the medical advice I was getting was based on a blanket policy”.

Making an example

It’s worrying enough when treatment guidelines produced by a branch of the government, supposedly based on the best available evidence – whatever that means – somehow morph into strict protocols from which doctors are afraid to diverge. When that happens, years of clinical experience become a thing of the past and medicine truly enters the ‘tick-box’ age. What’s worse is when the government uses so many of the levers of power – judiciary, media and police force – to ensure that those ‘guidelines’ are followed to the letter, regardless of the wishes of the individuals involved.  The Neon Roberts case flies in the face of the principle of patient-centred healthcare the NHS claims to follow.

But would the UK government really make an example of Mrs Roberts, in order to deter other parents from considering non-mainstream cancer treatments for their sick children? That idea is certainly reinforced when we learn that 15 policemen and a police helicopter were deployed to another friend’s house where Mrs Roberts and Neon were thought to be taking refuge. 

Strangely enough, that friend was Kevin Wright, founder of Bobby’s Fund/Kids’ Integrated Cancer Treatment, who’s no friend of the UK authorities since he cured his son’s cancer through natural means.

Medical tyranny?

It may be cold comfort for them, but Mrs Roberts and Neon certainly aren’t alone in suffering the State’s heavy-handed imposition of the medical status quo. Daniel Hauser’s parents went through exactly the same ordeal when they opted not to continue with his chemotherapy in the USA; also in the US, pregnant Samantha Burton was taken to hospital and had to undergo whatever procedure her doctors ordered in a failed bid to prevent miscarriage; an Australian court recently forced parents to vaccinate their child, rather than use homeopathy. These stories are only the tip of the iceberg, and each court ruling sets a precedent for similar cases in the future. 

‘Tyranny’ is a strong word.  But it’s entirely appropriate when a government, through its judicial system and police force, coerces people to undergo controversial, risky and painful medical treatment against their will when there are hundreds of other options available.