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Don’t Question the System or Else!

What do you do when your little boy is diagnosed with a brain tumor and you do not agree with the treatment proposed by physicians in an NHS (UK) Hospital? On 28 August 2014, one family took their little boy to another country to seek the treatment they considered in his best interest. What happened next stunned not only the parents, but the whole United Kingdom, and the world.  Not only was the little boy removed from their care, but the parents were thrown in jail in Spain where they had taken him. Some of you that have not been following this story may make the assumption that these must have been despicable parents.  Surely they must be parents who are neglectful, abusive and downright unworthy of the privilege of being parents. What was their crime?

Ashya King is the British little boy who was diagnosed with a brain tumor. He underwent surgery in a UK hospital to remove his tumor. The next step in the process was for him to be treated with radiation to the brain to destroy any remaining tumor cells. After detailed research and consideration, the parents came to the conclusion that they could not accept the treatment approach available under the NHS. They wanted Ashya to receive radiation using Proton Beam Therapy. This is a targeted and therefore less damaging way of irradiating the area where the tumor was located. It destroys less normal cells than the normal radiation treatment. Proton Beam Therapy is not available on the NHS. Although Ashya was assessed for this treatment to be paid for by the NHS, the parents were told that he was not a suitable candidate. The parents removed him from the hospital and took him to Spain where they own a villa. Their plan was to sell the villa and pay for his treatment abroad from the proceeds of this sale.

Like most literate, educated parents, able to think for themselves, they had conducted their own research, most likely on the internet. You can Google anything these days. On the basis of the damage that would have been caused to Ashya’s cognitive abilities, they removed him from the hospital.

Fortunately, the UK and worldwide press got a hold of the story, and the British public made their feelings clear. Soon, David Cameron, the UK Prime Minister was embroiled in the affair and asking for reason and sensitivity to prevail.

The parents are now out of prison. Their son is receiving Proton Beam Therapy. He is making reasonable progress. What lessons can be learnt about this situation?  It is clear that some physicians don’t like their decisions being questioned by those that they consider less medically qualified than they are. I think most of us knew that already. The physicians in this case felt that the parents were not qualified to make decisions about their own son’s care. In fact, the father, Mr King claims that they were told, that their son would be taken away from them, and they would not see him again until he was 16 years old if they continued to question his care.

If this is true and the physicians over-reached in this way, what confidence can be placed in the judgment of those involved in the refusal of Proton Beam Therapy on the basis of unsuitability when Ashya has been deemed to be suitable for this treatment? The NHS is now paying for this treatment in Prague. We wish Ashya and his family a smooth ride from this point on and applaud them for fighting a system which was not working for them or their son.

Some questions to ponder:

Where do you turn when the medical system is not working for you or your family?

What do you do when the physicians treating your child for a serious illness aren’t listening to your views on what is in his or her best interest?



1 Comment »

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    October 24, 2014 @ 4:17 am

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