Guest Post: Introducing Charlie’s Law, Bambos Charalambous MP (Labour, Enfield Southgate)

Bambos Charalambous MP (Labour, Enfield Southgate)

The tragic case of Charlie Gard, who sadly died in 2017 following a serious and protracted illness, attracted significant global attention because of the harrowing dilemmas that it highlighted.
Charlie’s story, was fraught with high tensions and unfurled very much in the public eye as a result of the constant media coverage, highlighted the inadequacy of current processes to prevent prolonged and distressing legal conflicts between the parents of seriously ill children and those responsible for their medical care.

Since Charlie’s death Charlie’s parents Connie Yates and Chris Gard have campaigned with dignity and determination to improve the situation for everyone involved: parents, healthcare professionals, hospitals, and the NHS more broadly; recognising that everyone wants the same thing: to maximise the life chances and general welfare of children suffering from serious illnesses and to reduce any stress on their parents who may be coming to terms with the potential death of their child.

Since 2017, there have been widespread debates in the public domain, amongst medical professionals and in parliament, about conflicts between doctors and parents, and about the place of the law in such disputes. In the case of Charlie, it is clear the system did not function as it should have done. As a result the relationship of trust between parents and medical professionals broke down.

The system needs to change so that other families and doctors can safeguard the essential bond of trust. During times of such immense emotional trauma and pressure, no parent should have to go through the stress of a court process to come to a decision concerning their child’s life. Such lengthy and expensive court proceedings as those which occurred in Charlie’s case, only simply serve to build further tension and create avoidable confrontation between medical professionals and parents during a very stressful and traumatic time.
There is a need for sensitive, rational debate in parliament about how fairly to address disagreements about treatment between health professionals and families. That debate cannot, now, help Charlie Gard. It can, though, help current and future children with serious illnesses.

Chris and Connie have been working with NHS medical professionals, world-leading medical ethicists and legal experts to draft Charlie’s Law – a legal amendment which will prevent long and painful conflicts between hospitals and families with sick children, as well as ensuring that decisions can be made out of the media spotlight.

On Wednesday 16 October 2019, following Prime Ministers Question Time, I will introduce Charlie’s Law to the Commons, through the Children (Access to Treatment) Bill through a procedural device known as a Ten Minute Rule Motion.

The law I am proposing would introduce measures to resolve disputes at the earliest stage possible. This would be by ensuring earlier and better access to both mediation services and independent ethics committees to help all the parties involved to work together to try to prevent cases from ending up in the courts, which is distressing and unhelpful for both the parents and the doctors involved.

The proposed law would also ensure that parents are in future given access to medical data when requested. It would create a new legal test – building upon current best-interest framework to ensure that treatment options can only be prevented by court order where they risk significant harm. If another reputable institution is willing to provide the treatment, and the harm threshold isn’t reached, the treatment could be obtained.

Beyond this, it would provide a clearer legal framework for decisions to be made and so would help prevent cases from ending up in court. It is my view, and the consensus view of medical ethics, that if a treatment is not harmful and reputable doctors are willing to provide it, no one should be prevented from seeking this treatment.

Everyone involved in developing Charlie’s Law is determined to ensure their work does not pit families against the NHS and medical profession, and instead implements a process to better support families, doctors and hospitals in future cases.

It can support their families to access desired treatment, within limits. It can help health professionals to be able to advocate for the best interests of their patients. It can help doctors to maintain relationships with families (even if not always seeing eye to eye). It can help society to understand what is at stake, and why these disagreements are so difficult, so vexed, and so inevitable.
Already, the proposals for Charlie’s Law have received cross-party support from colleagues in parliament, in both the Commons and the Lords. Yet greater support is required from all those involved, including medical ethicists, journalists and parliamentarians, to raise awareness of Charlie’s Law and the benefits its contents would bring to patients, parents and NHS medical professionals.

I will continue to work with all professional stakeholders, and with Charlie’s parents, Connie and Chris, to find a way to introduce the Bill, to raise wider awareness of the changes the Law would introduce, and to ensure that children faced with serious illness have the best access to treatment.

There will often be legitimate differences of opinion about which course of action is in the best interests of very sick children. What our system should discourage is turning discussion into confrontation. My Bill, if enacted, would avoid this, safeguard the critical bond of trust between doctors and parents, and save the exchequer a lot of money in the process.

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