19-year-old woman dies after being blocked by the NHS from pursuing treatment abroad15 September 2023 Issued by: Christian Concern
A 19-year-old Christian woman, locked in a lengthy legal battle with the NHS to be permitted to go abroad for experimental treatment which might save her life, has died in an NHS hospital. For over six months she had been prevented by a Court of Protection order from raising funds to travel to Canada to join a clinical trial of cutting-edge nucleoside treatment.
Late on Tuesday evening (12 September) the woman, known only as ‘ST’ due to severe reporting restrictions, died from cardiac arrest.
On Friday 22 September, 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 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 Zeinab Abbasi.
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.
In a statement communicated via their solicitors, the family (whose identity still cannot be revealed) has said: “On Tuesday evening we lost our beautiful and courageous daughter, known to the world as ST. To us she has a real name. Even now, in the hour of our grief, we continue to be gagged by the court order from saying her name aloud.
“To her family she was everything and we will cherish and never forget the 19 years we had with her.
“The past year, however, has been one of struggle, even torture, for ST and for her family at the hands of the hospital and the Court of Protection.
“Mitochondrial depletion syndrome (MDS) is very rare, and the particular version ST had has only a few known cases in the world. The UK has no expertise in treating the condition but three hospitals in America and Canada had offered to treat ST. Because of the court proceedings, however, ST was blocked from going there and because of the gagging orders we could not fundraise to finance her treatment and transport.
“ST said she wanted ‘to die trying to live’. This was her only chance, and that chance was denied to her.
“The disease ST faced was immense, but she and we refused to give up hope, no matter how small that hope was. ST was a committed Christian and firmly believed that life is the most precious gift we have from God. Every family faced with such a challenge and tragedy should have the opportunity to leave no stone unturned when trying to save the life of their child.
“Instead in our hour of need, when we needed it most, we were taken to court and had severe reporting restrictions placed upon us. We were 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. Day after day in the intensive care ward we and ST had to exist and keep going in an environment that had given up on her right and wish to live. Death we were told was the only remedy and the only hope.
“In such an environment, it meant we were afraid to leave her bedside, and were therefore forced to give up our livelihoods to the point we now do not know how we will pay for her funeral. We were not given any legal aid and had to pay for lawyers ourselves until recently Christian Legal Centre stepped in to provide pro bono legal representation. We still owe a massive debt to our previous lawyers which we slowly repay in monthly instalments.
“Because ST and our family refused to give up hope, doctors said that ST could not possibly have mental capacity to make decisions about her health. Despite the fact that two court-appointed expert psychiatrists and the Office of the Public Guardian all agreed that ST did have full mental capacity, the Court declared her to have no capacity either to make decisions about her health or even to instruct her own lawyers. From this case we have learnt that if you disagree with the NHS, you must for that reason alone be considered delusional. This has been deeply disturbing and traumatic to witness first-hand happening to someone you love.
“ST found herself trapped in a medical and legal system governed by a toxic paternalism which condemned her for wanting to live. She was in a race against time to escape ‘the system’ and the certain death it wished to impose on her. The system has now succeeded, but this is not the end. On 22 September we will continue to fight for these reporting restrictions to be overturned and for ST’s right to be identified and for her full story to be known.
“This system urgently needs to change, and we pray no one else will ever have to go through what ST and we as a family have been made to suffer this last year.
“Despite the draconian reporting restrictions, ST has fought long enough for the truth about her long torment to be exposed in the media. Despite her anonymity, she has been able to tell her story and to show the world what has happened to her, and what could happen to any of us. We feel she made a lot of new friends in the last week of her life, and we appeal for support in fighting for justice for our daughter and to bring what has been done in the dark into the light. 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: “We take very seriously the privilege of serving people in their hour of need and seeking justice for them.
“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 in this nation.
“ST was truly courageous and beautiful soul. She died advocating for the preciousness of life and importance of justice.
“As a committed Christian ST was determined to stand for life and no matter how weak and fragile she felt within the system. ST believed in the worth and dignity of every life and that such life was worth fighting for and not giving up on.”