Children (Access to Treatment)

I beg to move,

That leave be given to bring in a Bill to make provision about children’s access to medical treatment; and for connected purposes.

The recent case of Tafida Raqeeb was a sad example of a long line of disagreements about the treatment of seriously ill children that have ended up in court. In February last year, Tafida, then aged five, suffered a traumatic brain injury that left her on a life support machine in a hospital in London. In the autumn, contrary to the wishes of her family, the hospital trust wanted to turn off her life support. Tafida’s parents wanted to take her to Italy for further treatment, but that was challenged by the trust, which argued that it was in Tafida’s best interests that she should not be taken out of the country, and that she should instead be allowed to die. In a landmark High Court ruling in October, Tafida’s parents won the right to take her to Genoa for medical treatment. Tafida was allowed to leave the UK. She received the medical treatment she needed and, just nine weeks ago, she was taken out of intensive care. She is now breathing unaided.

In another case in 2014, Ashya King, a young boy with a brain tumour, was taken abroad, contrary to the wishes of the local trust, for proton beam therapy, which at the time was not available in the UK. Ashya’s parents were arrested in Spain for not acting in his best interests, but the High Court later ruled that he could receive the proton beam therapy in Prague. Following the therapy, which is now available in the UK, an MRI scan found that Ashya was free of cancer.

Not all cases have such successful outcomes. Those are just two of a number of cases in which a disagreement has ended up in expensive and intensive court proceedings, where judges have had to make what should be an ethical decision about medical treatment. That is a fundamental flaw in the system, which the Bill tries to remedy. It is clear to me that we do not have the appropriate support mechanisms in place to bring parents and doctors together at an early stage where there are disagreements about treatment, to properly address difficult questions that may prevent long, stressful and expensive court cases that are harmful to the child, the parents, the doctors and the hospitals.

In recent months, I have met Chris Gard and Connie Yates, the parents of Charlie, who, tragically and in highly public circumstances, passed away on 28 July 2017. Charlie was born with a rare genetic disorder, mitochondrial DNA depletion syndrome, which causes progressive brain damage and muscle failure. Following a breakdown in communication between the parents and medical professionals over an experimental treatment for mitochondrial disease, the hospital and Charlie Gard’s parents entered into a lengthy and distressing dispute involving a series of court proceedings. The case went to the High Court, the Court of Appeal, the Supreme Court and even the European Court of Human Rights. It was painful for all involved: the parents, the medical professionals working at the hospital where Charlie received his treatment, and everyone else concerned.

The case clearly illustrated problems with the current dispute resolution systems. The court proceedings caused enormous emotional harm and stress to both the parents and the medical professionals. Both wanted to do what they thought was best for Charlie. Instead of a smooth and efficient process aimed at resolving the conflict, we saw huge entrenchment, and precious time was lost while Charlie’s health deteriorated. Worse, parents and medical professionals were pitted against each other in the full glare of the media. That helped no one. Since then, Connie and Chris have dedicated themselves to preventing the escalation of conflict and protecting the doctor-patient relationship.

Those conversations, and my observation of a number of similar cases, led me to produce the Bill. I am pleased to say that I have support from hon. Members across the House, as well as from doctors—including medical ethicists and former presidents of the British Medical Association—and the wider public.

Organisations such as the Medical Mediation Foundation are already active in trying to resolve disputes between parents and doctors in various medical settings. A study by the Centre for Health Economics from the University of York also shows that, as well as saving time and taking stress out of disputes, mediation could save trusts money by resolving issues concerning treatment quicker and without the need for expensive proceedings.

Broadly, the Bill does five things, which are all geared towards addressing disagreements quickly and clarifying the legal situation so that cases are less likely to end up in court. First, it requires the Secretary of State to put in place measures to improve early access to mediation services in hospitals where conflict is in prospect. Mediation has been proven to be an effective way of re-establishing trust between parents and doctors and helping them work together to make the best decision for the child, but currently access to, and take up of, mediation services is very low.

Secondly, the Bill would provide for access to appropriate clinical ethics committees, so that both doctors and parents could be supported in making difficult decisions by impartial ethical experts. Very few hospitals have access to medical ethics committees, meaning that parents and doctors often face a postcode lottery when looking to get the appropriate ethical advice. The Bill would put provision in place for committees to come together quickly when required and ensure that doctors and parents take the step of calling for a committee at an early stage when they are faced with difficult decisions.

Thirdly, the Bill would provide the means necessary to obtain second medical opinions swiftly, ensuring that, when requested, parents would receive access to the child’s full medical data so that those second opinions were fully informed.

Fourthly, the Bill seeks to provide access to legal aid to ensure that families are not forced to employ costly legal representation or to rely on outside interest groups in order to fund representation in the courts. Finally, the Bill would create a new legal test of whether an alternative credible medical treatment could cause a child “disproportionate risk of significant harm” in order to decide whether a parent is able to seek that treatment for their child. This test would replicate the legal test already used by social services considering whether to remove a child from their parents’ care and would sit before, rather than replacing, the current “best interests” test, which is very broad and can be subject to a number of different interpretations. The clarity brought by this test would, in turn, bring more certainty around the likely outcome of a legal decision and therefore prevent cases from ending up in court.

It is my view, and the consensus view of medical ethics, that if a treatment is not harmful and reputable doctors are willing to provide it, no one should be prevented from seeking that treatment, and the new test of “disproportionate risk of significant harm” aims to clarify this.

Most of all, the underlying aim of this Bill is to prevent conflict between doctors and parents and help support them as they work together during very stressful and upsetting situations. Conflicts are bad for doctors, bad for parents, bad for our NHS and bad for the children whose care is under consideration. The frequency of these cases and the obvious distress they cause all parties have led me to believe that the legal system in this regard is in desperate need of reform. I hope that my parliamentary colleagues will agree with me on this. I commend the Bill to the House.

That Bambos Charalambous, Seema Malhotra, Emma Hardy, Sir Roger Gale, Preet Kaur Gill, Ruth Cadbury, Mr Virendra Sharma, Sir David Amess, Tim Loughton, Kerry McCarthy, Kate Hollern and Taiwo Owatemi present the Bill.

Bambos Charalambous accordingly presented the Bill.