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2 September 2014

Every moment with a sick child is precious; the system has failed Ashya’s family

Politics commentator Mark Thompson lost his first son, who was in and out of hospital since birth, at ten months. He calls it unconscionable that the Kings are denied access to their terminally-ill son Ashya's bedside.

By Mark Thompson

The case of Ashya King, the terminally-ill five-year-old boy who was removed from Southampton General Hospital by his parents and taken abroad has touched me very deeply.

Three years ago, my first son, Olly, was born. He had lots of medical problems and was in and out of hospital his entire life until he died just short of what would have been his ten-month birthday. I spent most of the time he was in hospital with my darling baby boy, by his bedside. It was vitally important to me that I was able to do this.

Ashya’s parents were clearly unhappy with the treatment their son had received in hospital in this country and decided that they wanted to take him abroad to seek photon beam therapy that they hoped could save him. As has been widely reported, it is believed they should be within their rights to do this.

The response of the hospital authorities and Hampshire Police to this was to issue an international alert, put pictures of the parents styled like mug-shots on the TV around the world and suggest that they had endangered the life of their child by their actions.

This was disgraceful. The parents essentially disagreed with the medical opinion of the doctors in the hospital and wanted to try something else that the NHS was refusing to give them. They clearly very much love their son and were willing to sell an apartment they have in Spain to fund the treatment themselves. Those are not the actions of people who are “endangering” the life of their child. If anything they are doing the exact opposite.

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An aspect of the reporting of this case made little sense to me. Time and again I kept hearing via TV and radio that Ashya’s feeding machine only had 24 hours of battery life and that it was a very “complicated” piece of equipment that would require a specialist to replace the battery. Fears were raised by the police, apparently voiced by the hospital, that the battery could run out and Ashya’s life would then be in danger from lack of food. But I know from personal experience that these machines are not that complicated. You attach a bag of feed via screwing in a tube. The machine is basically a pump that then delivers the nutrition to the patient. In Ashya’s case, I understand this is through what is known as a “peg” which is a hole directly into the stomach. Every one of these machines I have ever seen has a mains input. The battery is simply a backup and to give it portability. But even more importantly a feeding machine is not the only way to feed a tube-fed patient. If you take a large syringe, take the stopper out and attach it to the tube you can use gravity to deliver a bolus feed. The idea that Ashya’s life was being put in danger due to the risk of food being unable to be delivered seemed totally implausible to me.

And the effect of this reporting was to immediately make it look like the parents had been utterly reckless in their actions. They were clearly bemused by this and subsequently released a YouTube video showing the machine working perfectly fine well after the 24-hour window was up.

The Kings have now been arrested and are being detained by Spanish authorities. Yesterday they had an extradition hearing which they contested. It is now being reported that this process could take weeks or months. In the meantime they are held in custody away from their precious and desperately ill son.

I cannot imagine what it would have been like had I been forcibly separated from Olly during his life. My heart goes out to the Kings and what they have had to go through. Every moment with a sick child is precious. You never know if you might be spending the last few days, hours or even minutes with them as life is so fragile.

The system has failed this family. There is no clear indication from the authorities as to what law, if any, has been broken. They should be released immediately and allowed to spend what remaining time they have with Ashya.

Anything else is simply unconscionable.