THIS month has seen a significant development for desperate parents faced with their child dying. On March 16, the House of Lords voted in favour of my amendment to the Health and Care Bill, titled ‘Dispute resolution in children’s palliative care’.
All too often tension arises as anxious parents search for other possible treatments and clinicians feel this is futile. This is aggravated by the power differential in the relationship between the specialist doctor and the parents with scant medical knowledge, which can result in parents feeling intimidated or ignored. Disputes develop and can become so serious that the disagreement between parents and doctors escalates to court, even when the alternative treatment proposal comes from a reputable centre. My amendment requires that the option of independent mediation is explored before resorting to legal action. The vote in favour of the amendment, by 112 votes to 107, demonstrated the significant cross-party support for fixing a broken system which entrenches conflicts instead of defusing them.
Tragic cases of parent-doctor disputes aren’t just the cases you see in the news, such as Charlie Gard or Alfie Evans. Dozens happen every year. In fact, the Children and Family Court Advisory and Support Service (CAFCASS) reported that it dealt with 23 cases in 2021 alone. In Charlie Gard’s case, the total cost of a three-month trial of nucleoside powder would have been approximately £3,000. Contrast that with legal costs of over £250,000, made up of £205,225 costs to Great Ormond Street Hospital, almost £35,000 for which his parents had to fundraise, and £32,500 spent by CAFCASS.
There is no justification for a system which has parents in court instead of spending what precious time they have left with their dying child. The system is failing doctors and parents alike. My amendment (Charlie’s Law) ensures both parents’ and clinicians’ voices are heard when making decisions about a child’s treatment and to avoid cases escalating rapidly to court, which benefits neither parents nor clinicians and can cost them, the NHS and Government millions in legal fees every year.
Some challenged the amendment, suggesting it would hinder the ‘best interests principle’ and a doctor’s autonomy. However, we’ve made it clear, with the support of the leading children’s palliative care charity, Together for Short Lives, that this isn’t the case. The amendment in no way affects the legal basis of the existing best interests principle. And the amendment would never make a clinician provide a treatment they felt wasn’t in the child’s best interest. The amendment would simply ensure that if a reputable clinician is willing to provide treatment to a critically ill child, then that clinician must be able to provide evidence during the mediation process of how it is likely to benefit the child.
Connie and Chris set up the Charlie Gard Foundation to enact change, so their son’s death wasn’t in vain, and so parents wouldn’t have to experience the profound emotional trauma they endured. The Government now has the opportunity to end such disputes and rightly help parents and doctors understand each other better, rather than entrenching conflicts.
When the amendment arrives in the House of Commons on Wednesday, I hope MPs will vote in favour and we could finally see a decrease in major parent-doctor disputes. No one wins in such cases, legal fees mount and the emotional trauma is unbearable. It’s finally time for change.