Charlie’s tragic death on 28th July 2017 exposed the limitations of current processes available to parents, doctors and the NHS in efforts to ensure the best outcomes for seriously ill children. Charlie’s fight highlighted an urgent need for changes in the law, policy and legal and health practice to support families, as well as medical and legal professionals involved in what are deeply emotive, difficult and life-changing circumstances.
What is Charlie’s Law?
Over the past nine months, Charlie’s parents, Connie Yates and Chris Gard, have been working with NHS medical professionals, world-leading ethicists and legal experts to develop draft legislation that will prevent further long and painful conflicts between hospitals and families with sick children.
The bill provides three key changes to improve existing legislation. Charlie’s Law will:
- Prevent cases reaching court
No one wants to see disagreements over the care of seriously ill children to be decided in the courts. The legislation helps prevent cases from reaching court by providing access to clinical ethics committees throughout NHS hospitals, access to medical mediation where there are differences of opinion, and speedy access to all medical records including raw data.
- Providing advice and support for families
Charlie’s Law helps parents get the support they need by providing for better access to advice on ethics and their rights, independent second opinions, and legal aid to ensure families do not face having to pay for costly legal representation and are not forced to rely on funding from outside interest groups.
- Protect parental rights
Charlie’s Law will protect parental rights in these cases by restricting court involvement to cases where there is a risk of significant harm to the child.
Charlie’s Law Q&A
Why primary legislation?
Current law fails to support and protect all parties in cases of serious child illness. It is far too easy for disagreements between hospital staff and parents to end up in protracted and costly legal battles which benefit no one.
At present, court orders may be made on the basis of what the court believes to be in the best interests of the patient. As recent case-law has confirmed, the best interests test provides a broad platform for the overruling of parent’s wishes. Charlie’s Law proposes that treatment may only be prevented where it would be likely to cause the child to suffer significant harm.
A test for significant harm already exists in the Children Act 1989. That test is used effectively by local authorities, in cases where social services take the view a child is being mistreated by his/her parents. Charlie’s Law establishes that parents would have the final say over the medical care of their children, unless their decisions are likely to cause significant harm.
This change would clarify the boundaries for withholding medical treatment and establish a consistency in the law which would implement a clear, objective basis for such a decision.
Would Charlie’s Law have changed the outcome in Charlie’s case?
In Charlie’s case, Chris and Connie firmly believe that there was insufficient evidence to prove that moving Charlie from one hospital to another would have risked significant harm. If this is correct, Charlie’s Law would have prevented the judge from making a court order precluding such movement, especially if second opinions had been more readily available to support the family’s position. Chris and Connie similarly believe that, had Charlie’s Law been in operation towards the beginning of their dispute, and before Charlie’s condition had deteriorated, the judge would not have been able to issue an order to prevent them seeking nucleoside therapy. Their belief is based upon the fact that significant harm is an established principle in UK law with a high evidential threshold.
Why not simply pass a law enshrining parental supremacy over the medical care of children?
Unquestionably, the medical preferences of some parents gravely imperil the wellbeing of their children. Even if it were the belief of the Charlie’s Law campaign that parents ought to be able to prevent doctors administering life-saving treatment, such a proposal would undoubtedly fail in the UK Parliament. Charlie’s Law establishes that parents should have final say over the medical care of their children with the exception of where such decisions will cause significant harm. We believe this to be the correct legal test.
What is the likelihood of Charlie’s Law being passed?
Charlie’s Law is a Private Member’s Bill backed by a cross-party group of Parliamentarians. Bills like these are introduced by backbench (non-government) Members of Parliament. As such they cannot pass into law unless the presiding government allows the Bill time for debate and vote. In its current form, Charlie’s Law would need government support to succeed. If it becomes clear that government support is unlikely to be forthcoming, the contents of the Bill will be re-cast as an amendment and attached to a government Bill, which will force the issue. It is hard to give a clear time-scale for this, but we would expect the first debates in Parliament to be secured in the coming months.
Why keep disputes out of court and instead use independent mediation?
Despite what is often said about the case, parents, doctors and other NHS staff ultimately all want the same outcome: to maximise the life chances and general welfare of any child. None of these parties want to engage in the lengthy and expensive court proceedings which occurred in the case of Charlie Gard which simply serve to build further tension and create antagonism between parties. This process causes considerable stress both to parents and medical professionals.
Mediation outside of court is cheaper, more effective and faster. For most parents, the cost of legal representation in these cases is completely prohibitive. Similarly, for medical institutions in which funding is stretched a long-drawn out court case is not in their interest. In the tragic case of Charlie, the extra time required by court proceedings also impacted on the ability to make timely decisions on Charlie’s future treatment.
How is Charlie’s Law linked to the Charlie Gard Foundation?
The Charlie Gard Foundation was set up to focus on scientific research and family support in the area of serious mitochondrial disease. In setting up the Foundation, Chris and Connie have been working with a number of the world’s leading hospitals focused on the study of these diseases, and with families who have endured them. The money donated for Charlie’s care towards the end of his life has been used for this purpose.
In addition – and quite separately – to these core responsibilities, Chris and Connie have given their time to advise on Charlie’s Law, with a view to maximising the life chances for seriously ill children. Some donations to support this specific work have been received recently, though all of the doctors, politicians, families, ethicists, lawyers and others who have given their time throughout this process have done so entirely for free.
How would independent medical mediation be funded?
Charlie’s Law proposes to help avoid both parents and hospitals having to find the funding for expensive court cases by providing an internal mediation process within all NHS hospitals. The funding for medical mediation would therefore be provided by the Government within the funding settlement for the Department of Heath and Social Care. Parents with limited disposable income and cash-strapped medical institutions should not have to foot the bill for expensive legal representation in court when the alternative for dispute resolution can be far more streamlined, less distressing and much cheaper.
Who is supporting Charlie’s Law?
The parents of Charlie, Chris Gard and Connie Yates have been working to build a coalition of supporters for legislative change over the past nine months. They’ve met with leading medical ethicists, doctors, legal experts and parliamentarians. They have been contacted by a number of MPs and Peers from across the political spectrum who have shown an interest in the campaign and in legislation being presented to parliament. Charlie’s Law also has a huge grassroots and media following.