This post was originally posted on the morning of 1 August 2017 as a chronological update of developments in the case since we posted our last update on 18 July. In the light of a comment in response, we thought it would be helpful to extend it to cover the whole of July, and the entire progress of the application to the High Court which was made during July. We have also added links to the position statements of all parties, now published on the website of Serjeant’s Inn chambers courtesy of Katie Gollop QC, a member of those chambers who acted for Great Ormond Street Hospital (“GOSH”) in the proceedings.
Before the July application was made, it looked as if all legal proceedings between GOSH and the parents of Charlie Gard, who was born on 4 August 2016, were at an end, following the decision of the European Court of Human Rights on 27 June 2017, which endorsed the decisions by the UK courts made earlier in the year. The decisions of the UK courts were those of Mr Justice Francis in the Family Division of the High Court of England and Wales on 11 April 2017, the Court of Appeal of England and Wales on 23 May 2017 and the United Kingdom Supreme Court on 8 June 2017, refusing Charlie’s parents permission to appeal against the judgment of the Court of Appeal.
On Friday 7 July 2017 GOSH applied to the Family Division of the High Court for a fresh hearing in the light of claims of new evidence relating to potential treatment for Charlie’s condition. The terms of their application are set out in paragraph 2 of the judgment eventually given by Mr Justice Francis (“Francis J”) on 24 July as follows:
“the hospital asks the court to affirm the declarations made 11/04/17 if necessary after hearing further evidence. In view of the unique situation that has developed, the hospital also asked the court to make orders in the same terms. The hospital would not normally seek orders and does so for the following reasons among others: in his judgement, Francis J said that it was in Charlie’s best interests to be allowed to slip away peacefully. Decisions expressed as orders would better enable hospital to achieve that aim than would further declarations; the declarations have been interpreted by the White House, and thereafter by the parents through their solicitors, as permitting Charlie’s transfer to another hospital for NBT treatment. Aside from the fact that the declarations say that treatment is not in Charlie’s best interests. The hospital does not understand this line of reasoning but has no expectation that it would be possible to reach agreement about the legal effect of the declarations. Therefore orders are sought to remove any ambiguity; orders are enforceable. Despite all of the hospitals best endeavours, this appears as potentially necessary. Not for the first time the parents through their solicitors raised the prospect of criminal proceedings against the hospital and its staff. The Hospital understands that no court order best interests proceedings can afford it or its staff from prosecution.”
These claims of new evidence relating to potential treatment were set out in an open letter dated 6 July 2017 from the Bambino Gesu pediatric hospital in Rome, signed by a group of 7 clinicians and mitochondrial disease researchers, seeking to “clarify several points regarding the potential application of deoxynucleoside therapy to treat the RRM2B deficiency form of mitochondrial DNA depletions syndrome” and advocating reconsideration of treatment for Charlie. Charlie’s parents also wrote to GOSH on 6 July asking for the case to be referred back to court.
On Monday 10 July a hearing took place in the High Court before Francis J to give directions for dealing with GOSH’s further application. The core text below summarising what happened at this and subsequent hearings in July 2017 is principally taken from live tweets during hearings posted by the authoritative and well-known legal commentator Joshua Rozenberg @JoshuaRozenberg, now storified here. These tweets are an invaluable record for those who were not present during the hearings, and we’re grateful to have this resource to draw on.
Monday 10 July 2017
- 2.15pm directions hearing
- Francis J agrees in principle that case can be reopened if there is new evidence, emphasises that Charlie’s welfare is paramount
- Francis J does not accept that the case should be heard before a different judge, and explains that he was “not expressing a view” in his April judgment, but doing his job as a judge, stating that “if you [lawyers for Charlie’s parents] bring me new evidence, then I will be the first to welcome a different outcome”. He tells Charlie’s mother, Connie Yates that he has “an open mind and will consider the evidence that he receives”.
- Francis J states that Charlie’s parents “must set out all new material they say justifies changing the order made in April” and that he will not allow “a complete rehearing”
- Francis J directs parents to file written evidence by Wednesday 12 July so that he can review whether or not it is new evidence, and directs a full day’s hearing on Thursday 13 July, with the possibility of running over to Friday 14 July
Thursday 13 July 2017
- Hearing as directed on Monday 10 July
- Position statements filed by parties. Only that of GOSH appears to have been published, link to it here
- Charlie’s parents’ barrister, Grant Armstrong, debates issues arising from evidence that he wishes to rely on, Francis J makes it clear that he would need new material in order to review a finding of structural brain damage, and is keen to have an answer to the question of whether the proposed new treatment could repair brain damage
- Francis J says that the question raised by the 6 July doctors’ letter is whether Charlie’s brain damage is irreversible
- Charlie’s parents leave court unhappy with remarks from Francis J during the hearing but return at 2pm and judge reassures them they won’t be misquoted
- Evidence in chief (questions from Charlie’s parents’ barrister) and cross-examination (questions from GOSH’s and Charlie’s guardian’s barrister) of Dr Michio Hirano (at that point in the proceedings the doctor was anonymous but the reporting restriction on naming him was later removed with his consent), via video link to New York. Cross-examination reveals that the doctor has not read Francis J’s April judgment, or seen Charlie himself. Dr Hirano says that he would need ethical support and FDA approval for proposed treatment and that he would hope for enhanced muscle strength and small but significant brain improvement. Judge asks what he means by “small but significant” and Dr Hirano says that it depends how much brain damage is structural and he cannot assess that
- Francis J asks Dr Hirano whether there would be any meaningful brain function after treatment, and the doctor answers that he “can”t tell”. Under cross-examination by the guardian’s barrister (Victoria Butler-Cole) Dr Hirano says that he overstated the position (that brain damage was irreversible) when he gave evidence previously, acknowledges that lack of skull growth and reduced responsiveness are bad signs and confirms that he does not know the reasons for Charlie’s encephalopathy
- Dr Hirano says that he would be prepared to come to London and examine Charlie if case adjourned to permit him to do so
- Francis J refers to threats to doctors at GOSH and their lawyers and says they will be dealt with as severely as the legal system permits
Friday 14 July 2017
- Further hearing starts at 2pm
- Francis J thanks parents for statement made outside court condemning abuse of doctors
- Discussion about further directions and timing of final hearing, parties agree to experts’ meeting taking place on Tuesday 18 July with an independent chair and Connie Yates in attendance, but with her active participation in the meeting to be subject to the chair
Weekend of 15-16 July 2017
- Dr Hirano travelled to London, as did Professor Bertini from the Bambino Gesu hospital. On Sunday 16 July 2017 an EEG and brain MRI were carried out, according to Charlie’s parents’ position statement for 24 July.
Monday 17 July
- Dr Hirano visited GOSH and examined Charlie
Tuesday 18 July
- Experts’ meeting as directed by court
- Proceedings of meeting confidential but transcript produced as evidence for court hearing, and reference to parts of transcript made in published position statement of Victoria Butler-Cole
Some points from the transcript are set out in the guardian’s position statement for the Monday 24 July hearing.
- The experts agreed that Charlie’s brain dysfunction was severe and had deteriorated since the start of 2017, that he has microcephaly and that MRI evidence suggested that parts of his brain had suffered atrophy (irreversible loss of neurons)
- Dr Hirano’s view was that Charlie had both brain damage which was irreversible and brain dysfunction which was potentially reversible. He said that there was some degree of dysfunction which could theoretically be recovered but “I certainly don’t expect that he would be normal. That’s clear”.
- Dr Bertini suggested that at the time he made his offer to provide treatment to Charlie he had not been fully aware of Charlie’s condition and that treatment “will probably not have a great impact”
- Charlie’s parents’ position statement for the 24 July hearing states that:
“At the meeting on 18 July both Professor Hirano and Professor Bertini (having considered Charlie’s head MRI and EEG of the previous week) remained of the view that it was in Charlie’s best interest for him to be provided with NBT (nucleoside bypass therapy). They remained willing to treat Charlie with NBT at their respective hospitals.”
Wednesday 19 July 2017
- A US Congressional Committee (the House Committee on Appropriations) voted in favour of giving Charlie and his parents permanent residency in the USA in order for Charlie to undergo experimental treatment. The amendment would require a vote of the full House and the Senate to become law
Thursday 20 July 2017
- A body MRI of Charlie carried out at the request of Professor Hirano
Friday 21 July 2017
- 10am Directions hearing
- Judge directs parents’ barrister to deliver a detailed schedule identifying all the new material available since the judgment of 11 April
- Judge states that he intends to rely on transcript of clinical meeting as a “frank exchange of views between world class experts”
- Judge asks protestors not to upset other visitors to GOSH
- Judge confirms that Charlie cannot be taken abroad without a court order, despite US residency
- Joshua Rozenberg was not in court during the afternoon of Friday 21 July but it appears that the hearing resumed in mid-afternoon (tweets by @IanWoodsSky) and GOSH’s barrister referred to the MRI scan carried out earlier in the week as making “very sad reading” for the parents, who react angrily. Chris Gard shouts “evil” at GOSH barrister and walks out of court (@IanWoodsSky tweet 3.42 pm 21 July)
- Evening: parents told results of further medical tests and extremely distressed by them
Saturday 22 July 2017
- GOSH Chairman makes statement about “shocking tide of hostility and disturbance”
- Response made apparently on parents’ behalf by Alasdair Seton-Marsden to Sky News, claiming that the GOSH statement was a “cynical ploy”
- Gard family make statement disassociating themselves from Alasdair Seton-Marsden as their spokesman and accusing him of “tarnishing” their reputation, expressing themselves to be “extremely upset by the backlash” against them following GOSH’s statement
- Charlie’s parents communicate to GOSH their desire to spend all the time they can with Charlie whilst working with GOSH on a plan for end of life care. This is not made public before the hearing on 24 July
Monday 24 July 2017
- Hearing scheduled for 10am, moved to 2pm, discussions between parties in the morning
- Parents’ barrister explains that they are withdrawing their request to judge to change order made on 11 April, as time has now run out for Charlie and the proposed treatment cannot offer a chance of success “it is no longer in Charlie’s best interests to pursue this course of treatment”. Connie Yates also addresses court.
- Connie Yates statement
- Parents’ position statement 24 July
- GOSH position statement 24 July
- Guardian’s position statement 24 July
- Judgment of Mr Justice Francis of 24 July
Tuesday 25 July 2017
- 2pm Further court hearing at which arrangements for end of life care are discussed with judge and between parties and doctors during breaks in court hearing.
- Judge asks Connie Yates is she is happy for the hearing to remain open to the public and she confirms that she is
- Judge makes clear that he considers only practicable options for end of life to be hospital or hospice but postpones final decision until 2pm on Wednesday 26 July
- GOSH position statement 25 July
Wednesday 26 July 2017
- 2pm Further court hearing with adjournment whilst awaiting arrival of doctor instructed by parents as new medical expert in support of their argument for arrangements for Charlie to die at home.
- Connie Yates requests that further discussions be conducted in private. Media excluded from courtroom for a period before decision pronounced that it is lawful for Charlie to be moved to a hospice and extubated unless other plans made before 12.00 on Thursday 27 July. Reporting restrictions imposed on time and place of death until after Charlie’s death.
- Text of public parts of judge’s order of 26 July
Thursday 27 July 2017
- GOSH press statement
Friday 28 July 2017
Charlie’s death announced.
A brief explainer and reading introduction to the judgment of 24 July 2017 and order of 26 July 2017
The widespread misunderstanding of fundamental aspects of the case is something which has been extensively commented on by numerous commentators, and is referred to by Francis J himself in his published judgment. We have also published posts analysing it (most recently here and here) and will add to those. This brief explainer intends to answer some of the misperceptions we have seen repeatedly stated, and provide a reading introduction to the judgment. We would also recommend this article by Charles Arthur which includes extracts from the judgment in its explanations, and this thread by Dr Dominic Pimenta on some medical points:
1. Charlie Gard suffered from RRM2B MDS, an encephalomyopathic illness which has only 16 reported cases worldwide, with no cure.
— Dr Dominic Pimenta (@juniordrblog) July 29, 2017
The Family Division of the High Court in England and Wales was exercising an established jurisdiction to decide this case. This is a jurisdiction which arises both as part of the court’s inherent jurisdiction and under the Children Act 1989 to make decisions in the best interests of a child. These decisions can and do override the decisions of parents about a child’s welfare when there is disagreement, as there was in this case between doctors and parents in relation to medical treatment of a child. These decisions are not the same as the court substituting itself as the child’s parent for all decisions. In these decisions, the child is treated as an individual with its own rights and is represented by an independent guardian, as children under 18 do not have legal capacity in England and Wales and cannot represent themselves in legal proceedings. Children who are “habitually resident” in England and Wales are subject to the jurisdiction of the High Court.
Paragraph 18 of the 24 July 2017 judgment re-states these key aspects of the law:
In this country children have rights independent of their parents. Almost all of the time parents make decisions about what is in the best interests of their children and so it should be. Just occasionally, however, there will be circumstances such as here where a hospital and parents are unable to decide what is in the best interests of a child who is a patient at that hospital. It is precisely because the hospital does not have power in respect of that child that this hospital makes an application to the court, to an independent judge, for a determination of what is in that child’s best interests. In circumstances where there is a dispute between parents and the hospital, it was essential that Charlie was himself independently represented and a guardian was therefore appointed to represent Charlie so that there was someone who could independently report to the court as to what was in his best interests.
Independence of the courts and judiciary
English judges are appointed from the various branches of the legal profession (including legal academics) on the basis of their suitability against published criteria for publicly advertised posts in the judiciary, with appointments recommended to the Queen by an independent Judicial Appointments Commission. There is no political element in any judicial appointments, either via members of the current government, any political party or public election. The Ministry of Justice, which is a ministerial government department, deals with court buildings, non-judicial staff and other infrastucture of the system and court rules and procedures. This infrastructure includes the internet locations which provide information about courts in the UK which may be hosted on gov.uk websites. The descriptive content of such websites makes it clear that judges and their decision-making are independent of the state as legislature and executive. Judges are paid from the public revenue, but they exercise their judgment independently, impartially and in accordance with the rule of law and an oath taken on appointment as a judge. Paragraph 18 of the 24 July 2017 judgment underscores this, with Francis J saying:
Our judges are fiercely independent of the state and make decisions, having heard evidence and having considered the law.
Independence of advocates
Barristers in private practice in England and Wales are independent practitioners. Barristers share chambers in order to share overheads, but do not share their profits. It can and does frequently happen that barristers in the same chambers, particularly in specialised fields of practice, appear in cases against each other, with their administrative staff putting arrangements in place to ensure that confidentiality of communications with their respective clients is maintained. Barristers are independent advocates who represent the clients who instruct them, and do not articulate or represent their own views of a case in which they are professionally engaged.
Documents produced in the case
The only fully authoritative texts are the judgments, all of which are publicly accessible and do not need a detailed knowledge of law or medicine in order to follow their reasoning and conclusions. The judge himself has urged people interested in the case and the issues it raises to read them.
Position statements are documents routinely produced by advocates for parties in readiness for hearings, in order to set out what they will be arguing on behalf of their clients at the hearing. Written advocacy, in particular position statements and skeleton arguments (essentially the same thing) forms an increasingly important element in court hearings, and it is very helpful to have these documents published and publicly accessible to download and read.
The judgment of 24 July 2017 and order of 26 July 2017
English civil courts produce narrative judgments, which set out the background, discuss the evidence which the court has had to consider, and show the reasoning which has led to the court’s decision. The actual decision is recorded in the form of an order, which is dated and stamped with an official seal by the court office to show its status as an order of the High Court which is now in effect and can be enforced if it contains specific directions to do or refrain from doing specific things.
The judgment of 24 July 2017 reflects the fact that the judge did not have to make a final decision on the application to reconsider the evidence, because of Charlie’s parents’ decision to no longer seek the reconsideration themselves. It therefore does not contain a detailed analysis of the evidence and a ruling on points of disagreement. But the judgment contains some comments on the evidence that was presented and also deals with some points relevant to public discussion and understanding of the case, and management of similar cases in the future.
Paragraphs 1-10 of the judgment recapitulate on what has happened in the legal proceedings up to the date of the 7 July application, and explain that application
Paragraph 11 describes the judge’s approach to the evidence for the second hearing, and refers to the oath taken by the judge when he was appointed as setting the standard for his appraisal of the evidence. He warns of the pitfalls of “partially informed or ill-informed opinion” and of the pitfalls of social media:
when cases such as this go viral, the watching world feels entitled to express opinions, whether or not they are evidence based
Paragraphs 12-15 contain some remarks on the evidence given in relation to the 7 July application, and formal confirmation of the declarations made on 11 April 2017.
Among the most important of the judge’s observations on the evidence is the comment that
It seems to me to be a remarkably simple proposition that if a doctor is to give evidence to this court about the prospect of effective treatment in respect of a child whose future is being considered by the court, that Dr should see the patient before the court can sensibly rely upon his evidence. My task has always been to determine what is in Charlie’s best interests, not what benefit there could be to scientific research.
The judgment then deals with four separate points which Francis J wished to make about the case more generally.
In paragraph 16, the judge thanks the medical experts who have given evidence, and the staff of Great Ormond Street and praises their work. He makes it clear that he is satisfied that Charlie’s “fine parents” have “nothing whatever” to do with the threats and abuse, abuse which he condemns as a disgrace.
In paragraph 17 the judge thanks all the lawyers, particularly those who have worked for Charlie’s parents without being paid. He questions whether Parliament intended that parents in their position, facing such a profoundly important case, should have no access to legal advice or representation funded by the State.
In paragraphs 18 to 19 the judge comments on
the absurd notion . . . that Charlie has been a prisoner of the NHS or that the NHS has the power to decide Charlie’s fate. That is the antithesis of the truth
and explains the nature of the best interests jurisdiction and the independence and impartiality of the judiciary. It is important to understand that the case would have been heard in exactly the same way if Charlie had been receiving treatment in a private hospital outside the National Health Service. It was made clear in the April 11 judgment that the decisions in the case did not depend in any way on funding and finance.
Finally, in paragraph 20, the judge discusses mediation and raises the possibility of rule changes making it compulsory for mediation to be attempted in cases of this type, and/or for court-led mediation to take place as it does in a number of other types of cases in the Family Division and elsewhere.
The order of 26 July 2017
All court orders are headed in the same formal way, identifying the case reference number, the parties, and the court and judge which made the order.
The paragraphs which begin “Upon . . ” are known as recitals, and explain what material the judge has had to consider before making the order. The recitals are quite extensive in this case, reflecting the fast-moving and detailed developments of the previous days.
The numbered paragraphs which begin “It Is Declared That” are known as the operative parts of the order. The order consists of a series of declarations rather than directions. Declarations state what is lawful and in Charlie’s best interests. Paragraph 4 is at the heart of these declarations, making it clear that unless there was agreement between all three of Charlie’s parents, the guardian and GOSH by 12 noon on Thursday 27 July, it would be lawful for GOSH to take steps, some of which remain private and are set out in a confidential annexe to the order.
Paragraph 5 deals with the costs of the application, stating that there shall be no order for costs. This means that no party has to pay any other party’s legal costs but each must pay their own (if any).
Paragraph 6 sets out the continuing reporting restrictions applying to the case. These protect the identity of care providers and health professionals and experts engaged by Charlie’s parents, the doctors who attended court on behalf of GOSH on 25 and 26 July and of the hospice and its treating staff, as well as the contents of the confidential annexe to the order.
We have set this summary and links to sources out as a neutral factual resource for public legal education, consistent with our purpose as a legal education charity. But of course we as contributors share what was said by the judge in the first sentence of his final judgment of Monday 24 July, no less so since Charlie’s death announced on 28 July 2017:
It is impossible for any of us to comprehend or even begin to imagine the agony to which Charlie’s parents have been subjected in recent weeks and months as they have had to come to terms with the decision that they have now made
We express our individual and collective sympathy for them
Feature pic : The Shadowy Court (courtesy of Juuso Herranen on flickr – thanks)