1 in 2,000 people will face a diagnosis of mitochondrial disease
Charlie's Law
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.
Did you know?
Did you know?
The first diagnosis of mitochondrial disease was in 1962, but research only began to take place within the last 20 years
Did you know?
1 in 10 people have a rare disease
Did you know?
Mitochondrial disease can cause symptoms in any organ at any age
Did you know?
Many diseases stem from mitochondria dysfunction, including Alzheimers, Parkinson’s, diabetes and autism
Parliamentary Videos
Charlie's Law Blog
Charlie’s Law campaign hits historic milestones
The Foundation has secured not one but two historic victories for the Charlie’s Law campaign this week. First, through the leadership of Baroness...
Baroness Finlay’s tireless campaigning achieves historic win for palliative care
After years of tireless campaigning in the House of Lords, Baroness Finlay of Llandaff, achieved a historic win for palliative care across England....
New Year Update
The Charlie Gard Foundation sets up for Success in 2022! It has been a tumultuous year with the spotlight firmly on the pandemic....
September update:
This week, we continue to reach out to the Health and Care Bill Select Committee members to request a meeting. We have contacted...
Chris and Connie firmly believe that there was insufficient evidence to prove that moving Charlie from one hospital to another would have risked harm to Charlie Charlie’s Law would have therefore stopped the judge from making a court order to prevent moving Charlie to that hospital. Early access to Charlie’s medical data would have enabled clinicians from outside the hospital to give a full and proper second medical opinion about Charlie’s condition. Chris and Connie also believe that, if they had been given access to mediation at an early stage, it may have helped to resolve the disagreement between them and the doctors enabling them to reestablish the relationship of trust.
In the case of Charlie, the system did not function as it should have done, and consequently the relationship of trust between parents and medical professionals broke down. Connie and Chris are determined to change the system so that other families and doctors can re-establish the relationship of trust. They believe that, at times of such immense trauma and pressure, no family should have to go through the stress of a court process to come to a decision concerning a child’s life.
Chris and Connie have been working with world leading medical ethicists and lawyers to develop Charlie’s Law.
They have already found widespread cross-party support from parliamentarians in both the House of Lords and the House of Commons and are in conversation with them about the best process to change the law.
If you would like to support Charlie’s Law, please get in touch with us for ways to help.
Parents, doctors and other NHS staff ultimately all want the same outcome: to maximise the life chances and general welfare of any child. Lengthy and expensive court proceedings, similar to those which occurred in Charlie’s case, only simply serve to build further tension and create antagonism between medical professionals and parents during a very stressful and traumatic time.
Mediation in hospital settings is cheaper, more effective and faster. Neither parents nor hospitals can afford to run up huge legal bills, and it is important not to waste valuable weeks and months when treating a seriously ill child.
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.