(2 years, 5 months ago)
Lords ChamberMy Lords, I did not contribute to the debate on this amendment in Committee, but I did sit and listen to the contributions from around the House. What struck me was that in his characteristically sympathetic response, the Minister had not quite understood the purpose of the amendment and the problems it would solve. He stated that the amendment would place the views of parents and guardians above those of clinicians. I do not see that this is the case, especially with the revised amendment that we have before us. Unfortunately, it is a reality that parent-doctor conflict happens. I declare an interest as chief executive of Cerebral Palsy Scotland, and I have seen far too often the views of parents dismissed by clinicians. No matter how qualified parents may be, or what their role in life outside the hospital may be, they are consistently referred to only as “mum” or “dad”. Too often there is an imbalance of power with doctors, and too often parents are labelled as “difficult” or “sharp-elbowed”, as if wanting to do the best for your child is an irritant, and such parents should be grateful for what they get.
By the time a family is faced with palliative care, they will undoubtedly have been through the care of many clinicians: specialist, community, hospital and, potentially, hospice teams. The parents are therefore often the one consistent factor, and they are especially important when the child is too young or too ill, or unable to voice their own views. It is when parents feel they have not been listened to by clinicians that they resort to formal complaints or litigation. It is a last resort, but too often it is the only resort that is open to them. This amendment seeks to address this by giving them space for a formal coming together of all interested parties at an earlier stage, and so preventing costly and lengthy legal disputes. It does not place one party’s views above others; it does not, as outlined in proposed subsection (3), require the provision of resources for any treatment or require a doctor to provide treatment not in the best interests of the child. It simply ensures that there is a clear framework in these tragic, difficult cases to guide what happens next.
This amendment is designed to solve a problem currently faced by families and clinicians at moments of crisis. I urge the Government to consider it, and I will listen carefully to the response of the Minister tonight.
My Lords, the House will want to move on quickly, so I will not make the speech that I intended to make on this issue, but I would very much like to endorse what the noble Baronesses, Lady Fraser and Lady Stowell, the noble Lord, Lord Balfe, and my noble friend said in their earlier speeches. I know Connie Yates and Chris Gard, who are the parents of Charlie Gard, who died in 2017 of mitochondrial DNA depletion syndrome. Indeed, I have entertained them here in the House, arranged meetings for them and travelled with them. I entirely agree with what my noble friend is trying to do. This will make mediation work; it will create a proper balance and equality of arms. No parents should have to face litigation in these often tragic and troubling circumstances, so this is a good amendment and I hope the Minister will feel he can accept it.