Sir Roger Gale is MP for North Thanet.
The parents of Tafida Raqeeb will be relieved that the High Court has given its consent to her being taken to Italy for specialist medical treatment for the serious brain injury the five-year-old suffered, leaving her on life support. But they, like all parents who find themselves in the traumatic situation of doctors withholding treatment or preventing access to it elsewhere, have been ill-served by the confrontational legal process that pits clinicians against families.
Such court cases are a distraction for medical and nursing teams, a costly frustration for NHS managers, and a nightmare for caring parents, all of whom quite genuinely want the best for the sick child. The only beneficiaries from these emotional and often protracted cases, sometimes heard in the full glare of the gawping media, are the lawyers.
We must find a way of striking a better balance so that where genuine disagreements arise, and they inevitably will, there are ways of resolving the situation through mediation and conciliation, avoiding the need to go to court. That is why I support the Children (Access to Medical Treatment) Bill proposed by Bambos Charalambous, the Labour MP.
The purpose of the Bill is to reduce the number of confrontational court cases that arise, and there are many more going on behind the scenes that don’t make the headlines, distressing parents and distracting doctors every day. We intend to do this by ensuring that clinicians and parents have access to mediation and conciliation services, that there is access in place to second opinions (that may or may not provide a different view), by identifying sources of practical advice on ethical challenges, and by building upon the current test of the best interests of the child so that potential treatment options can only be blocked by the courts if they present the risk of significant harm.
Easy access by parents to medical information is vital not only in the interests of openness, trust and transparency, but also so that parents are able to make informed decisions and other, alternative medical advice can be sought. We hope to provide for this access.
If there is a credible alternative medical opinion, and a reputable institution is willing to provide the treatment, then that treatment option should be available.
We are particularly encouraged that two former Presidents of the British Medical Association have already publicly supported our approach. Baroness Hollins spoke recently in the House of Lords to support the principle of the Bill and Baroness Finlay has done so on Radio 4’s Today Programme. Demonstrating cross-party support with those two crossbenchers, Baroness Jolly, the Liberal Democrat Health Spokesperson, is also on the case, and many leading lawyers and medical ethicists are supportive, including Raanon Gillon, emeritus professor of medical ethics at Imperial College and currently President of the BMA.
At the heart of this issue is the relationship of trust between families and clinicians, and what we want to do is to ensure that trust is nurtured, not undermined, when differences of perspective inevitably arise in these complex and deeply distressing cases. The confrontational nature of our legal system is the antithesis of such nurturing of trust.
We are motivated in our mission by the death in 2017 of baby Charlie Gard who was cared for by Great Ormond Street Hospital, but who sadly died when the courts preventing his parents, Chris and Connie, taking him abroad for an alternative treatment option. I make no comments on the medical aspects of the case, but the way it was handled brings shame upon our existing legislation and adversarial legal system.
The law must be brought up to date, so that it is fit for the 21st Century, and so that clinicians, parents and NHS executives are spared the trauma of court proceedings. That would be a fitting legacy for Charlie.