23/07/2018 17:09 BST | Updated 23/07/2018 17:09 BST

Remembering Charlie: Why Children's Palliative Care Is About Never Giving Up

A year on, all those caring for seriously ill children are still reeling from the impact of negative social media coverage and the deepening myths about children’s palliative care

PA

This week marks one year since the death of Charlie Gard, shortly before his first birthday. It was impossible not to be moved by this little boy, and by the passion and pain of his parents Chris Gard and Connie Yates, striving to do their best for their son in the full and relentless glare of the world’s media.

A year on, this passion has helped launch the Charlie Gard Foundation as a lasting legacy to their son, investing in research and supporting families affected by mitochondrial disease.

Last summer, it seemed everyone had a view on what was best for Charlie, the overwhelming majority of whom had never met him or his family, nor the hospital staff caring for him. From political and religious leaders to the thousands, if not millions commenting on Twitter, all had a view and were as fervent in it as they were in their right to express it.

Those of us working in children’s palliative care – in hospitals, in children’s hospices and in the community – are all too aware of the very difficult decisions involved in cases like this. At a conservative estimate, there are 49,000 children living in the UK with a life-limiting illness, being supported by some of the most compassionate and tireless people.

Parents of these children will tell you how difficult and emotionally highly charged these decisions can be. I challenge you not to be moved by Steph Nimmo’s brilliant Was this in the Plan? blog about caring for her daughter Daisy. She says, “It’s the hardest thing I’ve ever had to do and it’s also the most selfless. I wanted one last cuddle, one last chance, but it was not fair and because her big brothers and sisters and I loved her more than anything else in the world we let her go surrounded by love.”

Professionals, many of whom have been working with the same families for weeks, months or even years will tell you that withdrawing any life-sustaining treatment is one of the most difficult areas of their work. That when difficult decisions need to be taken, keeping the focus on doing what is in the best interests of the child, and with full and open discussion with parents and carers is paramount. And that, deeply regrettably, in a small number high profile cases, including Charlie’s and that of Isaiah Haastrop and Alfie Evans earlier this year, those discussions do not end in agreement.

Among our 24/7 social media society, all too often there is little room for complexity or nuance, little room for doubt or shades of grey. Emotions run high. People want to help, yet feel helpless. But seeing doctors and nurses branded murderers or security guards outside Great Ormond Street Hospital or Alder Hey hospital, where hundreds of very sick children are receiving care, does nothing to help the child or family.

What was missing in these conversations was an understanding of the full and important role that palliative care can play in all our lives as they come towards their end. It was heartening that some parents were moved to speak up about the wonderful care their child and families had received by dedicated palliative care professionals.

In the mainstream media too, I heard talk of these children ‘just being left with palliative care’, as though they were being left to die without support. But children’s palliative care is an active approach to care and support – it is never about giving up or stopping care.

A year on, all those caring for seriously ill children are still reeling from the impact of negative social media coverage and the deepening myths about children’s palliative care. At Together for Short Lives we want to change this narrative, to shine a light on the complexity and bust the myths.

We do this for the thousands of parents who today face the future prospect of these very discussions with health professionals about their child’s end of life care. We do it for the parents who have been through it and live every day with the loss and grief. And we do it for the paediatricians and children’s nurses – in hospitals, in children’s hospices and in the community, who are striving to care for every child and family and help them make unimaginably difficult decisions, increasingly in the full glare of the public spotlight.

Andy Fletcher is the CEO of Together for Short Livesthe UK’s Children’s Palliative Care charity, dedicated to ensuring no seriously-ill child or family is left behind