Ten cases like Charlie Gards heard in English courts this year
Figures emerge as debate grows over merits of legal secrecy and high-profile public campaigns
English courts have considered 10 cases involving the disputed medical treatment of children so far this year, the Observer has learned.
The news comes as concern grows over the manner in which such cases are dealt with in the wake of the traumatic final days of Charlie Gard, the 11-month-old boy who died on Friday following a protracted legal battle.
Last year approximately 18 such cases were considered by judges sitting in England. The figures, confirmed to the Observer by Cafcass, the independent body that represents children in family court cases, highlight the fact that most cases involving disputed medical treatment are dealt with out of the public eye with a guardian appointed to represent the childs best interests, independent of what the parents may want.
In a statement, Cafcass explained: It is only where there is an approach to the court for a decision that Cafcass become involved, as the child is almost always joined as a party to the court proceedings.
As soon as the child is joined as a party, Cafcass is asked to provide a childrens guardian who will represent the interests of the child and is independent of the parents and the hospital.
The guardian will try to be as sympathetic as possible to the parents in their handling of the case, but only represent the interests of the child.
Charlie Gard died after being moved to a hospice following a high court ruling. He suffered from an extremely rare genetic condition causing progressive brain damage and muscle weakness.
Unusually, Charlies parents, Connie Yates and Chris Gard, sought attention for their sons case, which was then taken up by a grassroots network of supporters calling themselves Charlies Army and high-profile figures including Donald Trump,Nigel Farage and Pope Francis.
So-called pro-life preachers, anti-abortion people, populist figures such as Nigel Farage were waiting to get a hold on to this, said Dr Ranjana Das, senior lecturer in the department of sociology at the University of Surrey. There are lots of people who are disaffected, who are feeling they need a cause to hold on to. Its a complex matter as to why people get so emotionally involved, because it comes from a place of general anguish, and people get really emotionally involved in it like its a soap opera narrative.
Alison Smith-Squire, a journalist and spokeswoman for Charlies parents, defended their decision to go for publicity. With media coverage it would mean the story and ethics around it surely in the public interest would be in the public domain and not going ahead secretly behind closed doors, she explained on her website.
She added: As a writer I have been able to represent Charlie Gards family for free. I am paid for writing their stories which means they have never paid me a penny and have been able to keep all money raised for him.
John Cooper QC, an expert on media law who advises clients on crisis management, said the decision to go for publicity was a complex one.
In my caseload Ive handled a number of very worrying cases where families of people are in dispute with hospitals about treatments. Sometimes they do not have the strength, confidence or support to deal with the media and the public and often find themselves under pressure to agree with the hospital over a course of action.
Das said it appeared that some of those who had supported the Charlie Gard campaign were now approaching the parents of other terminally ill children, seeking to highlight their cases. I do not think, personally, we have seen the end of this.
Highlighting a new group supporting a very similar case involving a different disabled boy, she said: You will see there that the people posting for the last couple of days are all posting with the blue hearts, which is iconic of the Charlies Army team.
Charlie had a mitochondrial disease that caused progressive muscle weakness and brain damage, which his parents believe could have been treated by experts in the US.
When the couple ended their legal battle, Yates said that had Charlie been given the treatment sooner, he would have had the potential to be a normal, healthy little boy. But doctors at Great Ormond Street hospital, where he was treated, did not agree. Lawyers representing the hospital, which has pledged to learn lessons from the bruising case, said the clinical picture six months ago had shown irreversible damage to Charlies brain.
The protracted legal battle over Charlies treatment was mirrored by a campaign waged against Gosh and its staff on social media, something that dismayed the judge hearing Charlies case, Mr Justice Francis.
Das said the reverberations from Charlies case would be felt for many years.
This has implications for the ways in which the public engaged with this case, and the way the public engages with social democratic institutions in the public sphere.