A group of leading child cancer doctors have written to NHS England’s chief executive, Simon Stevens, in the wake of the high-profile Ashya King case to express concerns that other families will reject NHS advice and demand treatment abroad which could reduce children’s chances of survival.
Ashya, aged five, was taken from Southampton hospital in late August by his parents, who wanted proton therapy for their son following his surgery for a brain tumour. They believed it was a gentler form of radiotherapy than that advocated by UK doctors and would have fewer long-term side effects.
Their case prompted wide public sympathy for the parents, Brett and Naghmeh King, who spent more than 24 hours in jail in Marbella in Spain after UK authorities issued a European arrest warrant.
Doctors are worried that a potentially problematic precedent has been set, because the NHS eventually agreed to pay for Ashya’s treatment after the family went on to Prague where Ashya received proton therapy.
They say other parents are already asking for proton therapy, which is not yet available in the UK. They warn that, in the case of a cancer like Ashya’s, timing is crucial and to travel abroad for treatment involves delays that could affect the outcome.
There are serious concerns in the medical community over Ashya’s case. Delays were caused by the flight to Spain, where the Kings have a property they had planned to sell to raise funds, and court proceedings in the UK to decide what treatment the boy should have. In the treatment of Ashya’s cancer, called medulloblastoma, radiotherapy should take place between four and six weeks after surgery – but Ashya’s did not start until more than seven weeks had passed. More importantly, the doctors say, Ashya’s chances of survival could be affected because he has not had the full treatment package. His parents have refused chemotherapy for him.
While he was based at the Motol hospital in Prague, travelling daily to the private proton therapy clinic, the Kings signed waivers to exempt their son from the drug infusions that doctors had prescribed and the British court had ordered. Brett King, Ashya’s father, said in a TV interview that he did not believe his son needed chemotherapy.
Roger Taylor, professor of clinical oncology at the College of Medicine, Swansea University, said good outcomes for children with Ashya’s condition were achieved only through the full combination of surgery, radiotherapy and chemotherapy.
“It’s only with that package of treatment that you achieve that 70-80% survival,” he said. “We do know from past experience the approximate outcomes without chemotherapy. In North America, there was a trial of two different doses of radiotherapy without chemotherapy. Survival was in the range of 50-55%.”
It is understood the Kings are interested in immunotherapy for Ashya instead – an experimental approach being attempted by a few scientists which tries to prime the immune system to fight cancer cells, but is generally attempted only in cancer patients who have run out of other options. “It is not used anywhere as a substitute for chemotherapy,” said Taylor.
Ashya’s case captured the public imagination when the Kings were tracked down in Spain by international police, arrested and held in jail for the apparent crime of refusing the treatment NHS doctors recommended for their son.
David Cameron and Nick Clegg both backed the parents – the prime minister called for “an urgent outbreak of common sense” while his deputy said it was not appropriate to “throw the full force of the law” at the couple.
The family won huge public support through videos they posted on YouTube telling of their desire to do the best for their child and poignant photographs showing them with Ashya. Their concern has always been the side-effects of conventional cancer treatment. They sought proton therapy in the belief that it would do less long-term damage, even though in medulloblastoma, the entire brain and spine still have to be irradiated.
Children’s cancer doctors in the UK say the prominence and coverage of the case is causing other parents to question the advice they are given and seek treatment that they think is kinder but may – because of delays – make it more likely the cancer will come back. The survival rate among children whose medulloblastoma recurs is very low.
“They have this idea that there is something special about protons and [their child] can receive it without side-effects,” said one doctor, who worried about the erosion of trust between parents and clinicians. “From our point of view, I think this will mean the next few years of really difficult discussions with families.”
The group of doctors who have written to Stevens fear the decision of the NHS to pick up the bill for proton therapy in Prague will have made many families think the treatment is as good or better than their child can receive in the UK and that it faces opposition because of rationing or cost-cutting.
There were suspicions among some doctors that the decision of the NHS to pay the Prague bill was political, following the comments from Cameron and Clegg. NHS sources say, however, that there was no choice but to agree to the funding application, which came from the King family, because of the ruling about Ashya’s treatment made when the child was a ward of court, in the days after he was taken to Spain.
Mr Justice Baker ruled that proton therapy was a medically acceptable form of treatment for the child. “The course of treatment proposed by Mr and Mrs King is entirely reasonable. Ashya has a serious medical condition. Any parents in the position of Mr and Mrs King would do whatever they could to explore all options,” he said in his judgment.
A treatment plan, which stipulated proton beam therapy and chemotherapy, was agreed for Ashya by the court, which left the NHS no alternative but to agree to pay under the S2 reciprocal funding arrangements between European Union member states.
An NHS England spokesperson said: “NHS England takes decisions about treatment on the basis of evidence and what is in the best interest of the patient. Given that Ashya had travelled to Prague, it was clearly best that he continue to be treated uninterrupted so the NHS agreed to fund this care, as requested by his parents, in accordance with relevant European cross-border arrangements. We greatly hope he makes a full and successful recovery.”
