Independent on Sunday, 7 September 2014
The five-year-old isn’t dying – but nor is he getting the urgent treatment he needs, despite Jeremy Hunt’s extraordinary offer
A British boy is dying of a brain tumour. His distressed parents discover a life-saving treatment, available only in another country. Heartless doctors refuse to refer the child to the foreign clinic. Instead, they insist on going ahead with conventional treatment which, the parents fear, will turn him into a “vegetable”. The distraught parents seize their son from the hospital and take him abroad. The UK authorities overreact wildly, issuing an international alert for the family. The parents are found in Spain and arrested, causing an outcry and interventions from leading politicians.
This sequence of events has been widely reported in the past week. It is what a great many people believe about the controversy over five-year-old Ashya King, who is currently in a hospital in Malaga. Many of them have signed internet petitions or written furious blogs, citing the case as an example of the authoritarian state or the arrogance of doctors. The problem is that the story I’ve outlined simply isn’t true, starting with this basic fact: Ashya isn’t dying. Despite headlines using the hugely emotive phrase, he isn’t “terminally ill”.
In fact, his chances of surviving five years are between 70 and 80 per cent, as long as he receives prompt chemotherapy followed by radiotherapy. His tumour, which is called a medulloblastoma, was removed at a major teaching hospital, Southampton General, just over six weeks ago. To maximise his chances of recovery, chemotherapy should have started within four to six weeks of surgery. It didn’t, because his parents fell out with doctors in Southampton. The treatment they want is available at a private clinic in Prague, but that isn’t where they headed when they left the UK. They actually returned to the south of Spain, where they have a holiday home, and where they were staying when Ashya first showed symptoms earlier in the summer.
Obviously, the diagnosis of a brain tumour in a young child is devastating for any family, and no one doubts that Brett and Naghemeh King want the best for their son. But it is possible, despite being an eventuality discounted by most of the people making inflammatory comments, that even the most loving parents will sometimes make bad decisions in moments of extreme stress.
In this instance, the Kings did their own research on the internet and read about a form of radiotherapy known as proton beam treatment, which isn’t available in the UK. There is no general ban on referring NHS patients to have this treatment, although it is very expensive; around 400 patients, most of them children, have been sent abroad to undergo it since 2008. In suitable cases, the NHS will pay for the family’s travel and accommodation as well as the treatment. But proton beam radiotherapy is recommended in only a tiny proportion of cancers – around 1 per cent, according to Cancer Research UK.
Ashya’s doctors insist they took a clinical (not financial) decision that it would not be better for him than conventional radiotherapy. Because his parents disagreed, the doctors referred his case to a body called the NHS Specialised Services Proton Clinical Reference Panel. The panel confirmed the hospital’s opinion that Ashya was not a suitable candidate, but even then his doctors in Southampton went on talking to the parents to try to establish what they would be happy with. The Kings suggested they would be able to fund the treatment themselves, by selling their holiday home, and discussions continued until just before they took him to Spain nine days ago.
Since they appeared in Spain, members of the family have made emotional videos and press statements denouncing the behaviour of doctors in the UK. Ironically, when Ashya first became ill, the Kings brought him back to England to be treated by the NHS. Now they’ve changed their minds, but it is worth remembering that they are desperate for good news. Last week, NHS Choices issued a clear warning about the marketing of “emerging” treatments, stating unequivocally that “some overseas clinics providing proton beam therapy heavily market their services to parents who are understandably desperate to get treatment for their children”. The statement added that it is “not clear whether all children treated privately abroad are treated appropriately”.
When the Kings first removed Ashya from hospital, it was widely reported that the family were Jehovah’s Witnesses. Southampton General Hospital denies releasing this information to the media, and it does not seem to have had any bearing on Ashya’s treatment to date. But the fact that his parents belong to a millenarian religious cult suggests that they might not be entirely open to rational argument. Maybe that is why they have not taken up an extraordinary offer from the Health Secretary, Jeremy Hunt, to fly an oncologist to Spain to reassure them about the treatment Ashya would receive in the UK.
British doctors say he needs to start chemotherapy as soon as possible. But Ashya is a ward of a British court, and he cannot be moved from the hospital in Malaga without the court’s permission. On Friday evening, a High Court judge decided that the Kings can take him to Prague, but his travel arrangements are unclear. Whatever happens, one thing is certain: a child who should be receiving urgent treatment isn’t getting it. Clearly, there is a great deal more to this case than emotive headlines about an uncaring NHS.