Parents caring for sick children warned against sharing stories on social media in wake of Charlie Gard and Alfie Evans cases

Laura Donnelly
Parents caring for sick children have been warned against sharing stories on social media - PA

Parents caring for sick children have been warned against sharing stories on social media in the wake of a number of high profile cases.  

It follows the high-profile cases of Charlie Gard, Alfie Evans and Ashya King, which attracted international attention and drew commentary from figures including Donald Trump and the Pope.

The new guidance by the Royal College of Paediatrics and Child Health (RCPCH) suggests parents should be given more help to understand the possible impact on their personal lives of posting online or involving the media.

The document - the first such guidance -  aims to prevent conflict developing between medical staff and families, and provides advice on how to best identify and manage problems when they do occur.

It warns doctors against giving families unrealistic expectations of their child's future, and suggests outside help may be necessary when disagreements escalate.

Hospital staff should also be told to avoid engaging with social media during such cases, it also advises.

Protesters gathered outside Alder Hey Children's Hospital in support of Alfie Evans Credit:  Peter Byrne

Lead author Dr Mike Linney, from the RCPCH,  said: "Conflict is physically and mentally damaging for everyone involved, and in recent years, as cases are propelled into the public domain, further complexity is added to an already sensitive and stressful situation."

He urged parents "to be very guarded" and "take good advice" about how to manage social media.

"Once you start getting involved in social media you actually then can't control it, and that message goes out to both the professionals and to the parents as well," he said.

"I don't think there is sufficient advice out there about what the effects of social media can be."

The increasing prevalence of complex and life-limiting illnesses among young people, advances in science and information online about innovative - though sometimes unproven - treatments has led to a heightened risk of conflict, the authors said.

While the exact number of disagreements between doctors and families in the UK is unknown, a study published last year found 136 incidents across two three-month periods in 2013 and 2014 at Evelina London Children's Hospital.

These were estimated to have taken up almost 450 additional hours of staff time.

Supporters of Charlie Gard protest outside the High Court  Credit:  Paul Davey

Dr Peter-Marc Fortune, co-author of the guidance and president of the Paediatric Intensive Care Society, said: "There has been a clear change in expectation towards an expected cure, which is quite palpable over the last 10 years or so.

"I think that has brought an opportunity for difficult conversations and challenges to arrive along the way."

Professor Dominic Wilkinson, from the University of Oxford, said: "I think it's very difficult for a family to accept that in this day and age, with all the things you read in the news about the new therapies about the state of our science, that actually there might be nothing more that medicine can do to help."

The document "is a recognition by professionals that there is a problem", Prof Wilkinson said.

"There's been these cases of intense disagreement and they are not going to go away, there will be another case like Charlie Gard or Alfie Evans," he added.

"Those cases were so painful for everybody involved."

The new guidance has been published in journal Archives of Disease in Childhood.

Four UK hospitals are currently trialling a conflict management framework, which aims to reduce the number of disagreements which escalate between hospital staff and families.