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.