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Doctors or Gods?

The recent news story concerning the five year old boy with a brain tumour has ramifications far beyond the law courts of Spain. True to form, the British media has jumped on a moral band wagon while the real story remains conveniently under-reported.

The media always try to construct a solid dam to bolster their "story" behind which a torrent of truth is just waiting to escape. In time honoured tradition, the first cracks in the damn soon begin to show and the real story slowly begins to emerge.

The facts are worth considering. Two parents have a young five year old boy with an inoperable brain tumour. Their local hospital in the UK has told them that they can continue to treat their son but they have no chance of cure.

If you were the parents of a five year old child, how would you take that opinion? Yes, that's right, opinion. Let us take as a starting point that the parents love their child and want to explore every possible chance of him being cured. Although their local hospital has ruled out such an eventuality, they have not unreasonably sought an alternative possibility. The parents are responsible for the welfare of their child and being parents will do pretty much everything to they can in their quest for a more favourable outcome.

No parent would take the action they have taken lightly. They have travelled to Spain with the intention of selling their holiday home to raise the capital to pay for treatment not licensed in the UK. They have been given medical advice in the UK from the medical team at their local hospital and have taken the view that they want to at least explore the possibility of a more favourable outcome.

They appear to have taken every reasonable step to ensure throughout that their son was receiving the same treatment he would have been receiving had he still been in hospital in the UK. What has not been reported well is the fact that they wanted to discuss other options they had found by researching online and were dismissed by their local medical team. I have had similar experience myself so know how that feels. They seem like perfectly rational people to me just seeking the best for their child.

To issue a European arrest warrant seems a very extreme response given that they don't actually have any grounds for arrest other than being suspected of child neglect. As an aside, if every parent in the UK suspected of child neglect (and I include all those who allow their young children to become obese through the provision of an inappropriate diet with little or no exercise), our legal system would collapse. It isn't as though they are in some sort of tripartate suicide pact or that they are going to a Dignitas clinic in Switzerland.

We now see for ourselves the legacy of what happens when a heavy handed response is dealt out to well-meaning members of the public. If your child was facing the prospect of dying at the age of 5, wouldn't you want to at least explore any alternatives. It might be that the alleged clinic in the Czech Republic might even refuse to give them the proton beam treatment which they are reported to be seeking. They are just everything they can to put their child in the best possible position. The alternative would be to stay in the UK and wait for his inevitable death. I'm unfortunate enough to have experienced the death of my child and I can tell you I would do anything if I was faced with their situation. Don't anybody doubt the love they have for their child or that they want the best for him.

It is just possible that the NHS is unable to give them the best treatment. Yes, even the mighty NHS is limited in what it can offer. Also, it's ok for doctors to give their patients advice, but it's surely then up to the parents to weigh up that advice in order to be able to make an informed choice. Assuming the parents both have capacity to give informed consent for the treatment of their son, it's hard to understand how a European Arrest Warrant came to fruition.

This whole story has more than the whiff of medical paternalism about it. We're the doctors, we know what's best for you so you just sit there and do as we say. As I read and assimilate the facts this morning, this is how it is starting to look. Might there also be a hint of defensive medicine going here too? As long as they keep the child in their care at the local hospital, they can then document that they are doing all they can for the child and are treating him according to existing national clinical guidelines. I don't pretend that the doctors at the local hospital are in an enviable position - they are not. But it sounds as though an overly aggressive stance has been taken which has only served to further alienate the parents as well as incarcerating them while their son is kept in a Spanish hospital under police guard!

So who is the winner here? Not the little boy, not his parents and most definitely not the local hospital in the UK. It is the latter which concerns me the most although my heart goes out to the parents of the boy and, of course, to the boy himself who now finds himself unnecessarily a stranger in a strange country - I would have thought it would have been enough to have to fight his illness without having the emotional distress heaped on top!  

When the NHS first started, doctors were still largely treated with a certain respect bordering on reverence within UK society as a whole. Those days are long gone and stories such as this one only serve to further increase the current divide between physicians and their patients. At a time when doctors are being asked to encourage patients to adopt healthier lifestyles in a bid to relieve the stress on the NHS, this is definitely not what the doctor ordered. Now more than ever, doctors need to be engaging with their patients and getting closer to them to effect real meaningful change. European arrest warrants such as this do little to foster harmony and, in my opinion, do far more harm than good. The parents have now been criminalised for seeking the best treatment for their son. How does that work?

After I had my kidney transplant nine years ago, I informed my transplant consultant that I intended to go travelling around Europe for eleven weeks following the death of my fifteen month old daughter. He told me in no uncertain terms that he was dead against me doing that and wrote a letter to make his words a bit more legal. I had capacity and knew the risks and made arrangements for my care should I have needed it. My GP was fully supportive of me and did everything he could to help me plot the help available on my route. He has sadly since died and regrettably, so too has the pragmaticism of his attitude. We need physicians to be more flexible and adaptable when talking to their patients. For the record, I went abroad for eleven weeks and took extra care of myself having been made aware of the potential risks so soon post-transplant. I returned eleven weeks later with my wife having the break we both needed in the aftermath of such a massive life event.

I have no doubt that these imprisoned parents know what's best for their child and were merely trying to achieve that. A lot of people connected to this "story" would do well to take a step backwards for a period of self reflection. On a final note, the authorities can't even extradite the parents to the UK anyway without their consent. Meanwhile the little boy is now more alone than ever. That is the greatest tragedy.

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