Bow Group Health Research Fellow, Jon Stanley, on the tragic case of Charlie Gard

Friday, July 28, 2017

The decision of Charlie's parents to discontinue their legal case that has been well publicized and is heartbreaking for all who have followed this, but especially for them.

There has been strong language and sentiment expressed during this case including some distinct points of vitriol that I feel must be countered before making any recommendations.

The first is that politicians have been opportunistic in fighting on behalf of the parents, especially from the right. We should start by noting Members of Parliament from both main parties raised questions in Parliament in support of Charlie many months before the media took interest. Right wing politicians tend to value individual liberty and hold a scepticism of the state to a greater extent than those on the left, especially in UK politics. Taking an opportunity to represent these views is only offensive to those who wish these views to be never heard.

The second is that Great Ormond Street Hospital publically expressed concern that a professor in America had a financial interest in a treatment he believed could have helped Charlie. I find this egregious because the professor in question made no effort to conceal this and it is common in America for research into new treatments to be funded privately and that means an inventor will take a stake in a company to develop it; much as university spin offs and charities do in the UK. For example all intellectual property to a single cancer protein, 5T4, was given to a company to licence treatments targeting it. This is not controversial anywhere in the world and smacks of an emotive attempt to smear a profession who would in fact have much to lose from publicizing his work only to see it fail, if it was indeed a futile attempt.

Charlie's case does raise two serious questions about the British legal system and government who made a point of not intervening in the case. This is not the first time a legal fight has broken out that in essence prevented a child being treated abroad. In 2014 Ashya King's parents were arrested abroad for seeking a treatment for cancer not funded by the NHS. The treatment proceeded and the Sun newspaper reported this year the boy is cancer free and back at home.

Both the NHS and GOSH operate under state privilege. One is an arm of the state and the other a charity. Both are governed by complex laws to ensure high care standards.

The judgement to prevent treatment abroad is not merely a clinical decision but in effect a legal injunction that does not naturally lie within the medical profession.

In both cases UK experts were branded world class and this was taken as strong evidence to support the case. In both cases it begs the question by assuming global level expertise has been heard without hearing from medical opinion outside of the UK. How do we know this was the best Charlie could hope to have? How do our judges decide when enough medical opinion has been heard to make this call?

We cannot as a nation that doesnt lead the world anymore simply decide we do because we find the thought comforting. That is not confidence but rather conceit. This is especially true in super subspecialties such as medulloblastoma or mitochondrial disorders where the sum total of experts within the UK could comfortably sit around a coffee table and likely at conference have. How can in such a scenario can any specialist in the UK be considered truly external to GOSH? It is telling that NO local MEP in London has published action they may have taken to direct the parents to the National Contact Point established under the EU cross border directive. While this is primarily a body that deals with funding it could have allowed a focus on treatment options and rights abroad. This is a chance wasted and for no obvious reason.

If we are to cite global level opinion in legal cases then we have to go global in our search for opinion during attempts at pre-court arbitration. We would know then if any alternatives were possible and at the earliest possible time where a clinical case is deteriorating.

The UK legal system has several anomalies not helped by government that hinder a sense of natural justice. The right to a family life is enshrined in law yet when the NHS or charities sue parents there is no untested legal aid available to allow parents to do this without prejudice to their means. That government and charity use public money by grant or by tax break to create legal obstacles to members of the public without providing them right to representation or reply has no place in a civilized society. This applies to professionals investigated by their regulatory bodies such as the GMC who find their retention fees can only be used against them, removing in reality a presumption of innocence unless one can afford to remain innocent.

This anomaly simply must end.

I would ask the Secretary of State for Justice and the Attorney General to commission a report that non exhaustively determines that:

Medical organisations that seek legal action that directly or indirectly prevent the seeking of treatment or special opinion outside the UK must provide equal funding to patients or their parents and guardians to ensure courts reach a judgement about people's lives without prejudice to their means.
That opinions of experts cited as world leading or of global significance have this claim tested by independent commissioning the SoS Health or the courts of second opinions external to limits of the jurisdiction of the High Court.

That the role National Contact Point be clarified in cases where treatment abroad could possibly exceed that offered in the UK in terms of outcome. During trade talks with the EU and USA especially the UK should seek a pathway to ensuring external expert opinion is explored in court or in arbitration against world leading opinion from the UK.

I of course have my opinions about the case, but believe Charlie's legacy is best served now by review of the processes that I believe failed him and his family and can be rectified to prevent such a tragedy happening again.