By Avaia Williams, 22 October 2023
Sana, a 17-year-old girl, is at the centre of this case. She has Joubert Syndrome, a rare genetic condition that leads to abnormal brain development. In Sana’s case, unfortunately, this has also led to her suffering with Stage 5 kidney failure, and, without haemodialysis, Sana will die within a matter of days or weeks.
Sana has severe difficulties with understanding and communicating information, especially that regarding complicated medical procedures that are being proposed and she is not able to give or to withhold consent to treatment. There are concerns from her doctors that treatment would be burdensome, that Sana would find the process hard to tolerate, and that she might interfere with a Central Venous Catheter (“CVC”), a tube usually inserted into the neck or chest to facilitate dialysis, and require restraint for dialysis to take place. The hospital was therefore reluctant to treat her without a court order. They brought the case to court because the provision of life-sustaining treatment in this case was one they considered to be “a finely balanced issue” – and under these circumstances an application should be made (as per the Supreme Court’s decision in NHS Trust v Y and subsequent guidance).
The Hearing
This case (COP 14158703) was heard remotely in the Royal Courts of Justice before the Vice President of the Court of Protection, Mrs Justice Theis, on 18th October 2023. This was the substantive hearing following urgent directions and arrangements on Monday 15th October 2023.
The applicant was the Northern Care Alliance NHS Foundation Trust, the Trust responsible for Sana’s care. They were represented today by Vikram Sachdeva KC of 39 Essex Chambers.
Sana was the first respondent and was represented (via her litigation friend, the Official Solicitor) by Ben McCormack of Garden Court North Chambers (pictured above) and Damian Cullen from the Office of the Official Solicitor. Also present were GCN’s current pupil barristers, Helen Peden and Alexa Thompson.
Sana’s mother, Maryam Nogourani, the second respondent, was represented by Victoria Butler-Cole KC, also of 39 Essex Chambers.
Sana’s father, Majid Hosseini, was also present, but not officially represented – although it was said by Counsel for Sana’s mother that he shares the mother’s views.
Sana’s parents were both assisted by an interpreter who was present throughout the hearing on the video platform translating the proceeding via a separate phone-line which the parents held between them.
Pre-Hearing Discussions
Interestingly, prior to the hearing formally beginning, all parties were present via MS Teams for some ten minutes or so and took the opportunity to discuss some administrative points – such as confirming the existence and details of reporting restrictions, amending draft orders and discussing next steps. Such discussions, at least when courts are sitting in-person, tend to take place outside the watchful eye of the public – in the robing room or whispered between advocates sitting on counsels’ row.
The advocates were ironing out of the details of the (agreed) draft substantive order. What many lay observers may not be aware of is that, in many public law hearings, the lawyers draft the orders which they want the judge to make, and the judge goes through these orders during the hearing, making minor (or sometimes major) changes. In this case, finalising the draft order seemed to include arranging the next hearing date, the agreed plan going forward, and minor procedural matters due to an earlier consideration that the mother may not have been entitled to receive legal aid (an issue which, as it turned out, proved irrelevant as such aid was available).
Counsel for the Trust (Vikram Sachdeva KC)
Providing a very useful summary for the benefit of the observers present, Counsel for the Trust gave an overview of Sana’s diagnosis, explaining that this has led to end stage kidney disease and learning disabilities, which make it hard for Sana to understand what is happening. Particularly, she struggles to understand why a CVC line would be inserted and why she would then have to sit still, for up to four hours, three times a week, on dialysis for the rest of her life (subject to her receiving a transplant). He expressed that she “has had some behavioural reactions to needles” as well as the fact that “nurses’ uniforms are enough to distress her.” The hospital has proactively begun desensitisation therapy in order to get Sana used to these procedures, but due to the urgency of the treatment required, this has not been completed.
Counsel for the Trust went on to explain that “the nature of this treatment is such that the tube cannot be pulled out due to risk of […] bleeding and infection” further pointing out that “it is possible that some restraint might be required during dialysis […] It is not a small undertaking.” He explained that all parties have effectively agreed to this treatment provided a follow up review takes place with the court in a matter of weeks once it is clearer how Sana is reacting to the treatment. Anticipating possible complications, Counsel stated that “if it appears that she [Sana] needs significant sedation requiring an anaesthetist, we need to consider whether that is appropriate”.
Following this, Mrs Justice Theis inquired about the practicalities of making this order, asking “what will happen on the ground […] is the CVC line going to be put in this week?” Counsel confirmed that, provided the order was made, the line would go in on Friday and dialysis would start shortly after. Further, he confirmed that Sana would stay in hospital during this period to ensure there is oversight.
Mrs Justice Theis, showing concern for Sana, asked about the measures which would be taken to reduce and manage the risk of the CVC line being knocked or ripped out. In response, Counsel for the Trust read out relevant parts of the draft substantive order and capacity declaration for the benefit of the observers, referring to bespoke clothing items that would be used to support Sana to keep the CVC undisturbed. (It is often the case that all parties other than the observers will have copies of such papers and so advocates regularly proceed on the assumption that there is no need to go over these in any detail or will simply refer to “paragraph X of the order” – this makes it incredibly difficult for observers to follow proceedings.)
Before Counsel for the Trust or Mrs Justice Theis could clarify further, one of Sana’s clinicians who was present for the hearing (and one of the few people whose name is confidential by virtue of the Transparency Order) stepped in to clarify the matter regarding the clothing, saying that the garments had not yet been obtained but that “a charity […] has been contacted to obtain these.” Mrs Justice Theis was quick to ask whether the charity in question were “aware of the request and the urgency.” The clinician clarified that they “had not yet had a response as of coming onto the call today, it may be that if that charity cannot assist, we might be able to find a seamstress through a different pathway.” The court’s concern around the clothing was alleviated with the clarification that “A tight fitting high neck top is sufficient” whilst Sana is in hospital and “the bespoke clothing is more relevant when [Sana] is feeling better and more active”.
Counsel for the Mother (Victoria Butler-Cole KC)
Counsel for Sana’s mother opened her brief submissions by noting that both parents were eager to begin the dialysis, saying they “are very enthusiastic about dialysis and more confident than the doctors that Sana will be able to tolerate it well”.
In response to the submissions of Counsel for the mother, Mrs Justice Theis raised two points. First, she made clear that she was very aware of the real person at the heart of this case, noting that she “had the pleasure of seeing the video of Sana dancing, she clearly enjoys dancing”. (She may have been referring to the video reproduced in this Mail Online article.) The mother was smiling and nodding at this point. The judge commended “the creativity of the Trust in being able to, what has been termed desensitise, which may not be the right word, but help Sana get used to what the treatment may involve”. This work, she said has been “impressive”, noting that the Trust have gone so far as to provide a miniature dialysis machine for Sana’s favourite doll, Mario (shown with Sana in the picture above).
There was also an application from the mother for the standard Transparency Order that applies to Court of Protection cases (which prohibits identification of the person at the centre of the case, and their family) to be lifted. “There may come a time when an appeal is made for a live organ doner”, said Counsel, “and this is much more likely if the family’s names can be used”. She added that similar cases (e.g. the William Verden case, reported here by his mother) showed that “there is no negative impact on families from coverage of these sorts of cases: it’s a good news story. Someone needs treatment, and they’re going to get it!”. Mrs Justice Theis made clear her view that removing anonymity in this case would pose “no particular concern”.
Counsel for Sana (Ben McCormack)
Counsel for Sana (via her litigation friend, the Official Solicitor) stated that they “consider this to be a case where the proposed treatment is in Sana’s best interests” and that “this isn’t a finely balanced decision at all, it is fairly straightforward.” He went on to recognise that “Nobody’s mind can be closed to the fact that dialysis is a form of treatment that has a lot of ups and downs and it might have ups and downs for Sana in particular ,who might not understand what is happening or why”, but reminded the court of the person in this case and that it is “manifestly in her best interests that this treatment starts. Part of the best interests decision is the court trying to work out who the person is. What are her feelings […] what are her values […] for any of us who come along to Sana’s life late in the day […] it is extremely helpful to have videos and the words of people who know her like her mum […] it really brings her to life for the court. What it shows is somebody who is happy despite her illness, who is in good spirits, who is able to adapt and handle quite a lot of what has been thrown at her. She is sitting in a hospital bed, but she is retaining her joy and happiness […] Nobody wants to ignore the fact that she has some difficulties…but we also have a happy joyful young person.” With this, Counsel explained that they welcomed the hospital’s agreement to start treatment.
In respect of the Transparency Order, Counsel for Sana informed the court that the Official Solicitor herself, Sarah Castle, had taken an interest in the case and agreed that discharge of the Transparency Order in respect of Sana and her parents is something that should be done. As to whether the Trust should be named, the Official Solicitor took a neutral stance.
Response from Counsel for the Trust (Vikram Sachdeva KC)
Providing brief input, Counsel for the Trust noted that the most up-to-date version of the Transparency Order (as edited during the hearing) prevents only the identification of any of Sana’s specific treating clinicians. No party opposed this variation.
Input from the Press Agency (Brian Farmer)
Also present in the hearing was Brian Farmer, a reporter with the Press Association. Mr Farmer had turned his camera on at this point and indicated that he wished to speak. Mrs Justice Theis allowed this and – at least in the eyes of somebody entering the legal profession, one steeped in tradition and formalities, especially in the Royal Courts of Justice – a rather casual conversation between an accredited reporter and a High Court Justice took place. Whilst I understand Mr Farmer frequently intervenes in proceedings, raising concerns regarding reporting restrictions, experiencing this for the first time did, admittedly, throw me.
Mr Farmer explained that he wished to raise several points that he “seem[s] to raise regularly, and I would like to ask you [Mrs Justice Theis] because it is you [i.e. the Vice President]. Why can’t we name the clinicians? I know about the Abassi case and I understand in cases like Charlie Gard and Alfi Evans where clinicians are being harassed. But in this case, it’s nothing but good news. You’ve praised medical staff for good work. Why on earth would the clinicians or medical staff be at risk? The family should have the chance to praise them?”
Responding, Mrs Justice Theis stated “I take on board what you have to say Mr Farmer, but we are at the very early stages of what is going to be difficult treatment. Everybody will want it to go one particular way. We don’t know how it is going to go, and – without speaking for Mr Sachdeva – I imagine that is what lies behind that position. If you want to be able to name the clinicians it is better to be dealt with at the review hearing […] I would be reluctant to do anything at the moment.”
Mr Farmer then raised another interesting question, the answer to which many lay observers may find useful: “is there any reason why we can’t see witness statements?”. Mrs Justice Theis explained that “within the rules […] the order can be seen but the evidence cannot be seen without the leave of the court. If there is agreement to that, in circumstances, as long as all the parties have the opportunity to make representations and the court has considered those, then in principle that could be done. But each case is different.” (So, we can see witness statements if we ask to and the court decides to authorise it.). Counsel for the Trust interjected that it is Rule 5.9 of the COP Rules which states:
‘(1) Subject to rules 5.12 and 4.3(2), a person who is not a party to proceedings may inspect or obtain from the court records a copy of any judgment or order given or made in public.
(2) The court may, on an application made to it, authorise a person who is not a party to proceedings to—
(a) inspect any other documents in the court records; or
(b) obtain a copy of any such documents, or extracts from such documents.’
Finally, Mr Farmer checked that images of Sana – if provided to the press by the parents – could be used. They could, and they now appear in the press, credited to the Press Association for which Brian Farmer works, alongside his articles.
Reflecting on this interaction between Mr Farmer and Mrs Justice Theis, I found the interventions that Mr Farmer raised to be not only relevant, but also very concisely and succinctly put. (Mr Farmer would not make too bad an advocate!). Mr Farmer allowed the court, through his questions, to explain WHY the restrictions regarding reporting the identity of the clinicians were in place and to identify the law preventing routine access to evidence. In all cases, but especially in a case with such a serious subject matter, as Lord Hewart famously said: “justice must not only be done, but must also be seen to be done” (Rex v. Sussex Justices, [1924] 1 KB 256).
Input from the Father
Finally, Mrs Justice Theis was aware that, although it had been submitted that the father shared the views of the mother, he was not formally represented by Victoria Butler-Cole KC, and that she “should ask the father for his views“. Through the family’s interpreter, the father said that “Yes, I agree with everything”.
Judgment
Mrs Justice Theis delivered a brief yet clear judgment. (It’s not been published at the time of writing.) She first noted that it was agreed by all parties that the previous versions of the TO, which prevented Sana or her family from being identified, should be varied as agreed by counsel. She then continued:
“It is in Sana’s best interests to undertake the procedure to insert the CVC line this Friday and then soon after start the haemodialysis treatment. The dialysis will involve Sana sitting still for three to four hours up to three times per week in order to receive the necessary treatment […] It will require enormous support, not only by her parents but also the medical team that will support her.” Mrs Justice Theis noted that the risks of Sana interfering with the CVC would include “bleeding, air embolism, and [the] inherent risks of infection.”
“I would like to commend this particular Trust for the enormous care that they have taken. They have engaged with a dummy dialysis machine and a dummy CVC line […] and have also replicated that for her favourite doll, Mario, so she has been able to see that Mario has the same procedure as she will.” She finally ruled that “the treatment proposed, as difficult as it may be, has the best chance of success. Whilst there are inherent risks in relation to this treatment […] it is quite clear that those risks are heavily outweighed [by the chance of success]. I agree with the Official Solicitor, this is not a finely balanced best interests decision. It is a clear decision on the evidence that the order now sought is in Sana’s best interests.”
In her closing words, Mr Justice Theis again demonstrated the humanity in this case, “I sincerely hope that the treatment this Friday to put in the CVC and the dialysis that follows goes well and I hope that I shall be reading positive evidence by the time of the next hearing.”
Reflections
This hearing, quite literally, concerned life or death matters. At the heart of the case was a teenager, whose best interests were evidently considered by all parties. The fact that this case was a non-contentious matter, that being one where all parties, in principle, agree on the proposed course, was extremely interesting to see put into action, advocates coming together to act as a cohesive and supportive unit, with the interests of Sana clearly the only driving force.
Despite the case being non-contentious and there being clear agreement by all parties, I have still learned numerous things by attending this hearing. One which I hope to carry forward is the confidence and ability to challenge matters such as overly restrictive Transparency Orders. Being able to raise these concerns during the course of a hearing is in the best interests of all: it allows the advocates to make immediate representations and allows for the judge to amend the order immediately – principles which surely support open justice. For a case which demonstrates the implications (particularly with respect to costs) of not facilitating journalists (or indeed other public observers) concerned with transparency issues) see Celia Kitzinger’s reflections in N v Kent County Council (also a case heard by Mrs Justice Theis).
What was also striking about this case was the humanity involved. Everybody was clear that this matter was about a real person. For me, the anecdotes about her dancing, her interests, her existence, were constantly reminding all that this wasn’t a moot or a game of playing lawyer: the submissions and decisions made would decide the fate of a human being, a 17-year-old girl. It can be easy to become hardened to such matters when you see then so often, but Sana’s case reminded me of the lives, the stories, the feelings, and the wishes which are present in every case in every court across the country.
I am hoping to attend the review hearing in Sana’s case on the 13th of November 2023 and would encourage anybody who is able to do so to also attend. The interests of justice are served not only by advocates and judges, but also by observers ensuring that justice is seen to be done.
Avaia Williams is an unregistered barrister and founder of the Nightingale Rights Initiative. He will begin his pupillage next year at Parklane Plowden Chambers where he will practice in the Family Courts and Court of Protection. He regularly tweets @AvaiaLaw
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