Nottingham University Hospitals NHS Foundation Trust v Indi Gregory & Ors

By a judgment handed down on 13 October 2023, after a hearing on 9 October 2023, I approved the Hospital Trust’s care plan, and authorised the withdrawal of life sustaining invasive treatment in respect of IG, who is now a little over 8 months old. The approved order is dated 16 October 2023.

IG’s father (“F”) applied to the Court of Appeal for PTA, which was refused after an oral application heard on 23 October 2023.

A further application was made to the European Court of Human Rights, which declined to consider the case.

In accordance with the care plan, the Trust intended to proceed to extubation on Friday 27 October 2023, but extended that to 12pm on Monday 30 October 2023 to meet the parents’ wishes for extubation to take place after a hospice transfer.

To the surprise of the Trust, at 10.28am on Monday 30 October 2023, F’s newly instructed solicitors, Andrew Storch, sent an email to the parties, copying me in, which contained the following:

By email I informed the parties that the matter would be listed the next day, i.e 31 October 2023, at 2pm.

Later on Monday 30 October 2023, a formal application was made, seeking permission for the care of IG to be transferred to other medical professionals; implicitly, although not explicitly, the intended team is at the hospital in Rome. I take the view that the application should be considered in the light of the proposed expert evidence upon which F relies, although I will also need to consider whether such evidence should be formally admitted into the proceedings.

The application is opposed by the Trust and the Guardian. The Guardian is particularly concerned, from IG’s point of view, about the pain and suffering she is experiencing.

I accept that although I have delivered a final judgment and made a final order, which has been upheld by higher courts, there is no bar to a party (in this case F) from applying to the court to revisit the decision. The applicable principles seem to me to be accurately set out by Poole J in An NHS Trust v AF (by his Litigation Friend the Official Solicitor) and SJ [2020] EWCOP 55 at para 22:

I also remind myself that in respect of the proposed new expert evidence, the test remains one of “necessity”.

The skeleton argument on behalf of F contained submissions on law which appeared to suggest that the parents’ wish for IG to be treated in Rome cannot be overridden by the court, citing authorities about parental consent and human rights. In oral submissions, leading counsel for F did not press the argument to that extent. While reserving his position should the matter proceed to a higher court, he accepted that the ultimate test is one of best interests, albeit the views of parents who have a viable alternative is a powerful consideration.

To the extent that it is or may be submitted that the parents can give consent on IG’s behalf to her being transferred to a different clinical team in Italy, and the court has no jurisdiction or power to override that consent being implemented, I cannot agree. The dispute between the Trust and the parents is about provision of ongoing invasive treatment. To seek a transfer to a different clinical team is all part of the issue before the court now (albeit not at the hearing before me on 9 October 2023), namely whether it is in IG’s best interests for particular treatment to be administered or withdrawn.

Parental responsibility is defined in the Children Act 1989 s 3(1) as comprising "all the rights, duties, powers, responsibilities and authority which by law a parent of a child has in relation to the child and his property." The concept of parental responsibility describes the responsibility of a parent to secure the welfare of their child. This responsibility does not confer upon parents an unfettered right to make welfare decisions in respect of their children (see Alder Hey Children's NHS Foundation Trust v Evans [2018] EWCA Civ 805).

Pursuant to s 8(1) of the Children Act 1989 the court retains jurisdiction to determine questions which have arisen in connection with the exercise of parental responsibility by means of the exercise of its independent and objective judgment of the child's best interests. The Family Division of the High Court may also exercise its inherent jurisdiction to determine questions which have arisen in connection with the exercise of parental responsibility.

In Re J (a minor)(wardship: medical treatment) [1990] 3 All ER 930 at 934, Lord Donaldson MR said:

In Re R [1992] 1 FLR 190 at 199C Lord Donaldson MR said that:

Should there be any doubt about the matter, it was surely dispelled by the Court of Appeal in Great Ormond Street Hospital for Children NHS Foundation Trust v Yates and others [2018] 1 All ER 569. Within his judgment, McFarlane LJ reviewed the authorities. At para 97, he said:

At para 112 he continued:

In that case, the appeal against the judge’s refusal to sanction a transfer to the United States for particular treatment was dismissed. Similarly, in Alder Hey Children’s NHS Foundation Trust v Evans [2018] EWHC 308 (Fam), Hayden J determined that it was not in Alfie Evans’s best interests to be transferred to the Bambino Gesu hospital for treatment. By contrast, in Raqeeb v Barts NHS Foundation Trust [2019] EWHC 2531 (Admin) MacDonald J did not override the family’s wish for the child to be transferred to Italy. The facts of that case were very different (not least because the child was not in any pain), but once again it is apparent that the court had the jurisdiction and power to make such decisions as part of a best interests analysis.

Finally, I have been referred to a useful checklist for what amounts to a relocation scenario contained at para 57 of UR v (1) Derby City Council (2) NHS Derby and Derbyshire Clinical Commissioning Group [2021] EWCOP 10.

F’s human rights submissions were not pressed on me orally with as much emphasis as appeared in writing. The essence, as I understand it, is that the Trust’s refusal to cooperate in IG’s proposed move to a hospital in Rome constitutes a breach of IG’s human rights as exercised by her parents. It seems to me that if the court declines to sanction a move to Rome, as it clearly has power to do, it would have to do so on the basis that any interference with human rights would be both necessary and proportionate to give effect to the best interests finding. I do not consider that the human rights submission goes further than that. Further, as the Guardian points out, the Supreme Court dismissed on 20 April 2018 an application for permission to appeal in the Alfie Evans case which included similar human rights arguments. Again, however, it did not seem to me that F’s counsel were in fact challenging the long-standing proposition that the guiding principle in these cases is the best interests of the child.

In my judgment, where, as here, the proposed transfer for treatment elsewhere (in this case a hospital in Italy) is intrinsically bound up in the issue of treatment and best interests, the court has the power to make such determinations as may be appropriate, including sanctioning a course opposed by the parents. Of course, the court’s powers must be exercised with the utmost care, informed by a holistic view of the evidence, and an evaluation of the child’s best interests. The legal principles which I set out in my earlier judgment continue to apply.

I will not repeat what is set out in my publicly available judgment of 13 October 2023. However, I refer to a number of matters which are of relevance to these applications:

Nothing I have seen or heard leads me to question those conclusions.

I bear in mind that I have already, on 3 October 2023, rejected the application by F for expert cardiological and metabolic/mitochondrial evidence (the expertise of Dr Walsh and Professor Khan). I note also that no application was made at the final hearing by F’s counsel, after all the evidence had been collected, for such further evidence.

In his recent report, Dr Ross Russell says:

He raised the possibility of a cardiological cause for the desaturations, whilst acknowledging that (i) he is not an expert in paediatric cardiology, (ii) surgical options might be considered too risky, and (iii) “…this possibility does seem to have been considered by the hospital”.

The lead treating clinician, Dr E, has spoken to Dr Ross Russell, who agrees with the Trust’s care plan, and in particular that intensive care support should be withdrawn.

Like Dr Ross Russell and Dr Walsh, Professor Khan has not seen IG. That is not a criticism of any of them, but it contrasts with those who gave written and oral evidence before me on 9 October 2023, and are deeply familiar with IG, her conditions and her symptoms.

Professor Khan comments that “While there are effects on the brain from Hydrocephalus, this does not mean that Indi, given some more time to recover from the immediate medical management, will not be able to continue to interact and have a positive quality of life”.

That seems to me to be an expression of speculation, contrary to the evidence which I heard and the findings which I made about the irreversible nature of the condition, the lack of interaction with the world and the pain experienced by IG. Understandably, Professor Khan comments on one medical aspect, his area of expertise, whereas I had before me at the hearing a wide range of evidence which addressed IG’s circumstances holistically. As already mentioned, the unanimity of the medical evidence was to the effect that her co-morbidities are incurable and leading inexorably to death in the near future. At the risk of repetition, this case is about the specific circumstances of this little girl for whom a range of complex conditions all come together, whereas Professor Khan is looking at the condition in a more abstract way.

Professor Khan refers to the ketogenic diet and other therapies, but I have already explained my findings on the impact of this for IG. He refers to improvement in July and August, but I heard plenty of evidence about the significant deterioration in early September. Professor Khan does not indicate that there is any further, or alternative, treatment, which has any prospect of altering the very bleak prospect of this child. And, again, I remind myself that it is important to recall how IG experiences a whole range of related conditions, which militates against compartmentalisation of the medical evidence. It is understandably difficult for Professor Khan to appreciate the wider complexities inherent in IG’s presentation.

Finally, I remind myself that at the substantive hearing I had before me written evidence from a paediatric consultant with expertise in inherited metabolic diseases, who confirmed there is no cure for Indi’s D-2/L-2 condition, and that all realistic treatment options have been explored.

Having read the report of Dr Walsh, who has not seen IG, I am of the view that, as with the evidence of Professor Khan, it does not amount to material new evidence justifying a reconsideration of my decision.

The report is expressly based on assumptions provided to him by F’s solicitors. Those assumptions are:

These assumptions were, I understand, based on what Professor Khan said. I have expressed the view that Professor Khan’s opinion is undermined for a variety of reasons, which therefore in turn undermines Dr Walsh’s report. I also consider that the provision of “assumptions” in this way by F’s new solicitors to Dr Walsh was not appropriate. The stated assumptions are simply incorrect. They do not reflect my judgment, and my findings. There was nothing before me to suggest that these treatments are “neutralising” the detrimental effects of the condition. On the contrary, I found at para 8 of my judgment that “Recent therapies (medication, use of citrate and a ketogenic diet) have led to a reduction in the frequency of the desaturation episodes, but the overall prognosis is unchanged, and the plan is being implemented as a compassionate measure rather than in expectation that it will lead to improvement”. For the avoidance of doubt, I was satisfied that there was no material benefit from these treatments to the progression of her conditions. They have been administered for several months, but she has deteriorated irreversibly. And to posit that the damage to her brain is not such as to deprive her of a reasonable quality of life is the opposite of what I found, namely that her various conditions have resulted in her being unable to engage with the outside world or experience any meaningful quality of life.

In any event, Dr Walsh comments that “[IG’s] metabolic condition is outside my area of expertise” and “I don’t think she is a candidate for surgery.” He suggests that a catheter or stent might assist in palliative care but only if it was felt that IG would have a reasonable chance of survival with a meaningful quality of life, which I have concluded she does not. He sensibly defers to other professionals as to the severity of IG’s condition. He does not suggest that a catheter or stent would improve outcome. He opines nothing to contradict the evidence of the Trust, including two external hospital cardiological teams who would not be willing to offer cardiological treatment given her unstable condition and the futility of such treatment. Cardiac treatment was fully considered by the treating clinicians, and by me at the final hearing, and I accepted the evidence that it would not be appropriate (see for example paras 32(x) and 40 of the judgment).

Again, this seems to me to be compartmentalisation of one part of the medical history and diagnosis (cardiology), whereas I saw and heard all the evidence in the round which related to every aspect of her conditions, and not just the cardiological impact.

I am satisfied that there is no compelling new medical evidence to justify revisiting my decision.

It is regrettable that the option of a transfer to Rome was not placed before me at the substantive hearing on 9 October. I appreciate that these cases are sometimes listed swiftly, but the Trust’s original application was made on 7 September, about a month before. Had the option been on the table, (i) timely directions could have been given to deal with any matters requiring clarification, and (ii) oral evidence could have been given on the proposal. That would have avoided what has occurred in this case, namely a subsequent application to reopen which leads to additional litigation and pressures all round.

The short letter from Bambino Gesu is bereft of detail. It suggests that treatment would be paid for by the government of Italy, but the family would have to organise and fund the transfer. Although the hospital intends to prepare a detailed treatment plan, no Italian clinician has assessed IG, and it is therefore not possible to predict what their medical approach would in fact be in the event of transfer. The outline of their proposal is:

My reading of 41c. above is that they might well continue to intubate IG and they do not rule out invasive treatment. Counsel for F accepted this is probably the case. Certainly, F would wish those options to be kept open. Given that I have found cardiac intervention (suggested at 41a.) and other invasive treatment (encompassed by, or at least not ruled out by, 40c.) to be inappropriate, what would be the benefit of transfer to Rome? The answer is that, on the evidence and my earlier judgment, there is none. On the contrary, continuation of such treatment would, on my findings, perpetuate a high level of pain and suffering for IG.

I have already commented on the proposal by the Rome hospital for cardiac intervention. The evidence before me was that cardiac intervention is inappropriate because of the severity of the underlying conditions, IG’s instability and the lack of prospect of any meaningful quality of life, and the ongoing burden and pain of invasive treatment. It will not cure her conditions. Nothing which I have seen since my judgment has given cause to re-assess that finding. As previously mentioned, the cardiological aspects cannot be considered in isolation from other aspects of her presentation, including D-2/L-2 and severe bilateral progressive ventriculomegaly. IG is an individual who is the subject of an array of complex, interlocking morbidities. No one treatment can unlock all the diagnoses and transform her prognosis. Any treatment for one condition has an impact on other conditions, and an impact on IG herself. It seems to me that to assert baldly that the insertion of a stent for her cardiological condition can improve the combination of all conditions and symptoms assailing her is somewhat simplistic and not consistent with the evidence I received, nor with my findings. The best interests decision on cardiac treatment has been reached, and F is unable to demonstrate that it should be reversed.

Similarly, I found that the experimental therapies do not alter the trajectory of IG’s conditions. They are in the nature of palliative care.

Finally, I reached a clear conclusion that invasive life sustaining treatment is no longer appropriate for IG. The substantial burdens of such treatment significantly outweigh any perceived (but in my judgment negligible) benefit, in a context where her life expectancy is very short, and her conditions irreversible. Put another way, there is nothing to suggest that IG’s prognosis would be beneficially altered by the Italian hospital’s treatment. On the contrary, it may well prolong pain and suffering if and to the extent that it incorporates invasive procedures which in my judgment are not in IG’s best interests, and should not be sanctioned.

I have in mind also the potential impact on IG of the logistics of the proposed move to Rome. This has not been explored in any detail, but it is acknowledged by leading counsel for F that the proposed transfer carries extra risk for IG, albeit on F’s case that risk is outweighed by the potential benefit. I cannot discount the possibility that the process of transfer will increase the distress and suffering which IG experiences. She is highly unstable. To remove her from her current specialist clinical team for the transfer, and commit her into the care of the air ambulance doctor and nurse who have minimal knowledge of her immensely complex health issues, as a matter of common sense is not without risk. I have some doubt about whether the air ambulance would be willing to undertake this task once they carry out a full assessment and appreciate the complex specialist medical requirements, which is a pre-requisite before they commit to such a transfer.

It is open to me to adjourn this matter to enable such matters to be investigated (or indeed any matters which I consider require further exploration). But in my judgment, it is not necessary or appropriate to do so, for I have decided against the application in principle, and further delay is contrary to IG’s welfare.

I am satisfied that the proposal for a transfer to Rome would not be in IG’s best interests.

In my judgment, there is no material change of circumstances, or other compelling reason, to justify reconsideration of my original order. The application is dismissed. In reaching this conclusion I have considered in the round my original judgment, the evidence before me at that hearing, and everything I have read and heard at this hearing.

If and insofar as F seeks to admit in evidence the reports/letters of Dr Ross Russell, Dr Walsh and Professor Khan, that application is dismissed, although I emphasise that I have had such evidence in mind when considering the specific application before me.