I lost my son Charlie after a lengthy court dispute. Now I’m campaigning to revolutionise NHS care

It is far too easy for disagreements between hospital staff and parents to end up in protracted and costly legal battles that benefit no one

It is often said that no parent should have to bury their child. This gets repeated a lot, but until you have been through it, it’s just another cliché.

When we lost Charlie, the world felt backwards. Everything was in the wrong order. Upside down, brutal and final. Even worse was – and is – the feeling that we could have done more for him. I would not wish this upon my worst enemy.

We came out of our ordeal totally disillusioned with the justice system, and deeply concerned that others would find themselves in a similar situation to us.

At the time, the UK Supreme Court and European Court of Human Rights both ruled in favour of ending Charlie’s treatment, despite highly accredited medical professionals from across the world offering their support and stating that Charlie could be transferred to another hospital to receive further treatment.

Our current legal situation disempowers both doctors and parents by failing to provide them with enough ways to prevent and deescalate conflict. It is far too easy for disagreements between hospital staff and parents to end up in protracted and costly legal battles that benefit no one.

From the moment Charlie’s treatment stopped, Charlie’s father Chris and I, and many others, have been campaigning to improve the situation for everyone involved: parents, healthcare professionals and hospitals. We recognise that everyone wants the same thing: to support the parents of children suffering from critical illnesses and to protect the relationship between parents and the healthcare professionals involved in the child’s treatment.

On 11 September after Prime Minister’s Question Time, the Labour MP for Enfield Southgate, Bambos Charalambous, was scheduled to introduce Charlie’s Law through his Children (Access to Treatment) Bill.

The law, developed with the support of NHS medical professionals, world-leading medical ethicists and legal experts, provides four key changes to improve existing legislation.

Firstly, it would offer access to medical mediation to resolve disputes at the earliest stage possible. Timely medical mediation can prevent misunderstanding, deescalate conflict and make it more likely that the relationship between doctors and parents can get back on track. Access to medical mediation is currently very limited in hospitals in England but has a recognised impact in resolving disputes and restoring trust.

Secondly, the law will offer access to clinical ethics committees throughout specialist NHS hospitals. In cases such as Charlie’s, parents and doctors in these circumstances often face exceptionally complex ethical decisions. They deserve the best possible ethics advice in an impartial and supportive setting. Only a few specialist NHS hospitals have access to an appropriate ethics committee.

Thirdly, the proposed law would give parents access to medical data when requested, so that a second medical opinion on their course of treatment can be obtained in a timely manner.

Finally, we firmly believe that if a treatment is not harmful, and another reputable institution or doctor is willing to provide additional treatment, then no one should be prevented from seeking this treatment. The “significant harm” test is already being used by local authorities in cases of child mistreatment. But Charlie’s Law would go further by ensuring that the decisions relating to a child’s treatment are much clearer and that treatment options can only be prevented by court order where they risk significant harm.

We believe that the steps set out in Charlie’s Law would support both parents and doctors. To have the support of many parents, medical ethicists, politicians and former presidents of the BMA, has been overwhelming. Everyone involved is determined to ensure their work does not pit families against the NHS and medical profession, and instead implements a process to better support families, doctors and hospitals in future cases.

When Charlie passed away, Chris and I made a promise that we would go on fighting in Charlie’s name and help other children. And that is exactly what we will continue to do. Our aim now is to support other families and medical professionals and make sure that they don’t have to experience the challenges and hurdles we faced when seeking treatment for our son.