The launch of Charlie’s Law

Connie and Chris lost Charlie on 28th July 2017, but have bravely and tirelessly been working behind the scenes to put every effort into Charlie’s Foundation and Charlie’s Law to ensure that other parents don’t endure the same suffering they did whilst fighting to save their son’s life.

Charlie’s Law was launched on May 1st 2018 with an exclusive interview on This Morning (the full interview can be seen here). There was extensive media coverage from ITV, the BBC and various news channels where Charlie’s Law was very well received. Over the past nine months Charlie’s parents have been working with NHS medical professionals, world-leading ethicists, and politicians towards a law that would help prevent prolonged and painful conflicts between hospitals and families with sick children. Although this proposed Bill is separate from Charlie’s foundation, it’s something Charlie’s parents feel most passionately about, and are taking on this task as individuals.

Charlie’s Law – a Private Member’s Bill – proposes to clarify the law around ‘best interests’ and ensure families going through these difficult times are properly supported.

The Bill has three main clauses:

1. To focus on helping parents get the help they need by providing for a) better access to advice on ethics and their rights, b) independent second opinions, c) legal aid (to prevent ill-equipped families having to take on top-flight legal representation and relying on interest groups).
2. helping to prevent cases from reaching court by providing for a) access to clinical ethics committees throughout NHS hospitals, b) access to medical mediation in cases of conflict c) access to medical records including raw data.
3. protecting parental rights in these cases by preventing court orders from being made except where there is a risk of significant harm to the child.

The Bill for Charlie’s Law has been carefully drafted over a long period and has the backing of doctors, lawyers and many others. If you would like more information on Charlie’s Law, please email charlieslaw@thecharliegardfoundation.org.