The Health and Care Bill must support parents of critically ill children
3 min read
The government is moving once in a generation health and social care reforms through Parliament. It is essential that the rights of parents are not forgotten, and there is legislation to support them and clinicians when deciding about treatment options for their critically ill children. The amendment I tabled, widely known as Charlie’s Law, aims to achieve just that.
Connie Yates and Chris Gard have been working with MPs, peers, NHS professionals, world-leading medical ethicists, and legal experts culminating in Charlie’s Law – a Bill created in honour of Charlie Gard, who passed away from a rare genetic disorder called Mitochondrial disease. The circumstances that befell Connie and Chris’s family were unimaginable; they lost their son whilst fighting a highly public and emotionally painful court case. This case highlighted the flaws in a system that pits medical professionals against parents.
Formal litigation doesn’t just cause substantial emotional stress for the parents and doctors alike; it adds a significant financial strain. Parents and the NHS have to cover the costs of legal fees. It is the added stress to parents who have to pay for legal fees, whilst going through court proceedings and losing precious time with their critically ill child. For clinicians, it costs the NHS money they could use to improve patient care or ensure they meet existing targets, such as reducing A&E wait times and tacking the treatment backlog.
No medical professional would ever be required to give care or treatment that they do not view is in the best interests of a child
Unfortunately, cases like that of Charlie Gard are not anomalies. Similar cases happen every year, both under the radar and in the public light. The hospital responsible for Charlie’s care said it spent a total of £205,225 on legal fees for Charlie’s Case. Connie and Chris had to fundraise to cover the financial cost of their legal fees. Neither parents nor hospitals can afford to run up huge legal bills, and it is crucial not to waste valuable weeks and months when treating a seriously ill child.
In this light, I tabled Charlie’s Law as an amendment to the Health and Care Bill. A case that reaches litigation is indicative of a system that has failed both parents and doctors. Charlie’s Law, if enacted, would improve early access to mediation services in hospitals where conflict is a prospect; provide access to appropriate clinical ethics committees; provide the means necessary to obtain swift second medical opinions; and in rare circumstances where cases reach litigation, seek to provide access to legal aid to ensure that families are not forced to employ costly legal representation.
Finally, it would create a new legal test of whether an alternative credible medical treatment could cause a child “disproportionate risk of significant harm”, to decide whether a parent can seek that treatment for their child. This test would replicate the legal test already used by social services when considering whether to remove a child from their parents’ care and sit before – rather than replacing – the current “best interests” test, which is very broad and can be subject to several different interpretations. A key point here is that no medical professional would ever be required to give care or treatment that they do not view is in the best interests of a child.
Charlie’s Law is geared toward arming parents and clinicians with the tools necessary to resolve disputes early on, avoiding a breakdown in trust and escalation to formal litigation. The government has a golden opportunity with the Health and Care Bill to enact robust mechanisms to protect the essential bond between parents and their clinicians when making decisions about treatment for their critically ill child. The government cannot waste this opportunity.
Emma Hardy is the Labour MP for Kingston upon Hull West and Hessle.
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