ST’s family seeks to overturn ‘de-humanising’ reporting restrictions

This Friday, 22 September, a grieving family will challenge a ‘de-humanising’ court order which prevented them from pursuing specialist treatment abroad for their critically ill daughter.

The courageous 19-year-old died last week, shortly after her story became front page news. She can still only be known publicly as ‘ST’ due to a highly restrictive court order, which the family is challenging.

For over six months, ST had been locked in a lengthy legal battle with the NHS to be permitted to go abroad for experimental treatment which might have saved her life. ST was suffering from a rare genetic mitochondrial disease, but was fully conscious and able to communicate.

A committed Christian, ST had said she wanted to ‘die trying to live’ and hoped to raise funds to join a clinical trial of cutting-edge nucleoside treatment in Canada.

However, the restrictions placed on her and her family by a Court of Protection order made the challenge of raising funds insurmountable.

Branded ‘delusional’

A judgment from Mrs Justice Roberts in the weeks before her death disturbingly said that ST did not have capacity to make such decisions after the NHS lawyers argued she was ‘delusional’ for disagreeing with the hospital’s view that her condition was hopeless and she had to be put on an end of life pathway.

The ruling was made despite two psychiatrists providing evidence to the contrary.

Following her death, because of the restrictions, the family are still fearful that even telling friends and family of her passing could break the order, which would be a criminal offence.

The family gave up everything to resist the hospital’s demands to hasten ST’s death and have now even struggled to generate funds to pay for her funeral.

This Friday, ST’s family, supported by the Christian Legal Centre, will appear at a hearing in the Court of Protection to ask for the reporting restrictions to be discharged and for them to be given a right to tell their story.

The experience of ST’s family is not an isolated incident. The current practice of the Courts which determine end-of-life disputes between families and the NHS is to impose draconian reporting restrictions so that the identities of families and doctors involved never become known.

That controversial practice is currently under scrutiny in an ongoing Supreme Court appeal arising from two other high-profile end-of-life cases, Isaiah Haastrup and Zainab Abbasi.

‘We need justice’

Ahead of the hearing on Friday, in a statement communicated via their solicitors, the family (whose identity still cannot be revealed) has said: “We are deeply grieving the loss of our daughter but face no choice but to continue to fight for justice. What has happened to ST and us over the past year must be fully exposed so that no one else has to go through what we have.

“We are still in shock over how we and our daughter have been ‘dehumanised’ by the hospital and the courts. We could have been sent to prison if we had named her in a fundraiser for the treatment.

“When our daughter was most in need of people’s prayers and practical help, she was taken to court by the NHS and had severe reporting restrictions placed upon her. We were gagged and essentially given a choice: give up and let us prepare your daughter for death, or have your lives dismantled and torn part if you wish to resist us. We chose to give up everything for our daughter.

“On top of everything, we have had to live in fear, constantly self-censoring and having to watch everything we say about what we are facing, even to close friends and family.

“This cannot be right and must not happen to another family. ST has a name and her story and ours must now be told.

“We are not out for revenge, but we want justice for our daughter and for other victims of this cruel system.”

Andrea Williams, chief executive of the Christian Legal Centre, said: “The case of ST is not just about justice for her and her family but ensuring that justice in such cases is done with full transparency and proper scrutiny.

“We are seeking justice for her and for all those affected. These restrictions are untenable and cannot stand.”