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 plight of ST, who still cannot be named due to the court order, has been front page news culminating last week with the tragedy that the courageous 19-year-old had died.
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.
ST, a committed Christian, had said she wanted to ‘die trying to live’ but the restrictions placed on her and her family by a Court of Protection order barred them from raising funds to travel to Canada to join a clinical trial of cutting-edge nucleoside treatment.
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 in the case 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.”
ST’s case
ST’s tragic case was reminiscent of Charlie Gard, Alfie Evans and Archie Battersbee, in that an NHS Hospital, which cannot be named under the restrictions, had asked the Court of Protection to authorise removal of life-saving medical treatment from ST, effectively condemning her to death.
Unlike in most such cases, however, ST was conscious, able to speak, and had instructed her own lawyers to argue that she should be kept alive and be allowed to go to Canada for experimental treatment which would give her a chance of survival.
ST was suffering from a rare genetic mitochondrial disease which caused chronic muscle weakness, loss of hearing, and damage to her kidneys, making her dependent on regular dialysis and other intensive care. It did not, however, affect the functioning of her brain.
The Hospital argued that while ST’s prognosis was uncertain and she could have survived for some months, her condition was deteriorating, and she was therefore “actively dying”. The NHS Trust had asked the Court to approve a “palliative care plan” for ST which would mean she is no longer given dialysis and would die from kidney failure within a few days.
Two psychiatric experts instructed by the Hospital examined ST and have told the Court that she was not suffering from any mental health illness and had the mental capacity to make decisions about her own medical treatment.
ST told psychiatrists she disagreed with the doctors and wanted them to continue to sustain her life. She wanted to be given a chance to participate in clinical trials of nucleoside therapy, which are due to resume in Canada later this year and would have given her a chance of survival. She said she realised that the experimental treatment might still fail to save her, but in that case, she said that she “wanted to die trying to live”.
However, the Hospital doctors argued that ST’s refusal to trust the judgment of her doctors and to accept her imminent death as inevitable amounted to a “delusion”.
In a judgment released on the 25 August, Mrs Justice Roberts ruled that the decisions about ST’s life and death should be taken by the Court of Protection based on an assessment of her best interests, and that ST lacks capacity to have a say in the matter via her own lawyers. Rejecting the opinion of both psychiatric experts, the judge concluded that ST was mentally uncapable of making decisions for herself because she does not believe what Hospital doctors say about her condition. She concluded: “In my judgment… ST is unable to make a decision for herself in relation to her future medical treatment, including the proposed move to palliative care, because she does not believe the information she has been given by her doctors.” [para 93]
ST grew up in a tightly knit Christian family who have spent all their savings to pay lawyers to resist the legal proceedings brought by the NHS to end her life. Despite her illness, she attended a regular school, achieved good GCSE results and was studying for her A levels when her health deteriorated after catching Covid in August 2022. She has been in an Intensive Care Unit ever since.
In November 2022, ST issued Lasting Powers of Attorney to authorise her parents to make decisions on her behalf in the future if she was to lose mental capacity to do so in the future. In February 2023, the Hospital asked the Court of Protection to set aside the document on the grounds that she did not have mental capacity to sign it. The Hospital then made a further application to approve a palliative care plan, said to be in ST’s best interests but which would lead to her death within a few days.
Like the family of Charlie Gard, ST’s only hope of cure was the experimental treatment known as nucleotide therapy, which is only available abroad. Her family wanted to appeal to the public to raise funds to enable her to participate in a clinical trial which is expected to start in Canada later this year.
However, in March 2023, the Court made a “Transparency Order” which imposes draconian restrictions on reporting any information which might lead to identification of ST, members of her family, or the Hospital. This prevents ST and her parents from giving any direct media interviews or making any appeal for funds. The Transparency Order was made at the request of the NHS Trust without any reasons.
ST’s parents made an urgent application to reconsider the Transparency Order to enable them to raise funds for ST’s treatment in Canada. The Court has held three hearings since that time, but has not found the time to consider that application to date.
The hospital Trust has tried to argue that it did not prevent the family from taking ST to North America to receive specialist treatment. However, this appears to be misleading as the severe reporting restrictions have prevented the family fundraising for the £1.5 million needed.