My Lords, I added my name to Amendment 287, and I thank my noble friend for tabling Charlie’s law. Charlie Gard’s case was painful for all involved, including his parents and the doctors at the hospital where he was receiving treatment. Protracted disagreements can have far-reaching effects, particularly when they are played out in public, as has happened in a small number of cases. For the child, it can mean a delay in a decision about their care and treatment. For the parents and family of the child, there can be enormous distress, feelings of loss of control, and financial strain. Healthcare staff can also experience stress and anxiety, and they might be subjected to intimidation.
The parents of Charlie Gard, Alta Fixler, Alfie Evans, Tafida Raqeeb, and many others, wanted to do what any parent would do to try to improve their child’s condition and alleviate their child’s suffering. However, it is evident that the parents in such cases do not feel adequately heard and listen to when discussing options about their child’s treatment. This results in the devastating conflicts that lead to litigation. With this amendment, parents would be given the chance to discuss their views openly with the clinicians and hear the views of those clinicians, too.
Too often in my career, I have heard distressed parents described as “difficult” and “impossible to work with—nobody can work with them”. These are grieving parents who are looking for someone they can trust to help them. Mediation can sometimes help parents, and professionals to acknowledge that the consequence of conflict has been to shift focus away from the needs and welfare of the child. An independent mediation process can help to facilitate less confrontational conversation while supporting both parties. Thus, it provides support for both. Mediation across England is inconsistent. It needs to be available in every NHS hospital where conflict emerges, and at an early stage, so that the lives of very sick children such as Charlie are less likely to escalate to court.
In the rare event that a child’s case escalates to court, the amendment seeks to provide access to legal aid to ensure that families are not burdened with the financial strain of legal representation. Currently, families in this position are effectively punished, both financially
and emotionally, through litigation for simply doing what they strongly believe is in their child’s best interest. Although this amendment makes provision for legal aid, the main purpose is to keep cases such as Charlie’s out of court, rather than arming everyone to be prepared to enter into long-winded and expensive legal disputes. Parents would not automatically win the right for their children to be given novel treatment, but the amendment would rebalance the dialogue towards resolution, rather than towards costly and distressing legal battles that do nothing to help the parents’ grief.
I also strongly support the introduction of the significant harm test. This legal test would focus on whether an alternative credible medical treatment could cause a child “disproportionate risk of significant harm” when deciding whether a parent can seek that treatment for their child. A key point here is that no medical professional would ever be required to give care or treatment that they did not view as in the best interests of the child. The legal test is already widely used under the Children Act 1989 and should be applied to cases such as Charlie’s in the future. I am strongly in support of this amendment and commend it. It is a just and necessary package to support parents and doctors, and I hope the Minister will be in a position to welcome it.