Dean Gregory v Nottingham University Hospitals NHS Foundation Trust
| Jurisdiction | England & Wales |
| Judge | Lady Justice King |
| Judgment Date | 23 October 2023 |
| Neutral Citation | [2023] EWCA Civ 1262 |
| Court | Court of Appeal (Civil Division) |
| Docket Number | Case No: CA-2023-002011 |
[2023] EWCA Civ 1262
Lady Justice King
and
Lord Justice Birss
Case No: CA-2023-002011
IN THE COURT OF APPEAL (CIVIL DIVISION)
ON APPEAL FROM THE HIGH COURT OF JUSTICE (FAMILY DIVISION)
Mr Justice Peel
FD23P00452
Royal Courts of Justice
Strand, London, WC2A 2LL
Bruno Quintavalle (instructed by Andrew Storch Solicitors) for the Appellant
Emma Sutton KC (instructed by Browne Jacobson LLP) for the First Respondent
Katie Scott (instructed by CAFCASS) for the Second Respondent
The Third Respondent did not attend and was not represented
Hearing date: 23 October 2023
Approved Judgment
This judgment was delivered ex-tempore on 23 October 2023 and the perfected judgment finalised on 30 October 2023 by circulation to the parties or their representatives by e-mail and by release to the National Archives.
This is the judgment of the Court.
This is an application for permission to appeal against orders made by Peel J (‘the judge’) in respect of a baby girl, Indi, who was born on 24 February 2023 and is a patient in the Paediatric Intensive Care Unit (‘PICU’) of Nottingham University NHS Trust (‘the Trust’). Indi is the much-loved child of devoted parents and as the judge said: ‘this case is about the precious life of a very young person, a family member and an individual in her own right’.
On 16 October 2023 the judge sitting in the Family Division of the High Court made the following order:
“1. By reason of her minority, Indi is unable to consent to her medical care and treatment.
2. It is in Indi's best interests to be cared for in accordance with the compassionate care plan dated 9 October 2023, and such other treatment as her treating clinicians in their judgment consider clinically appropriate to ensure that Indi suffers the least pain and distress and retains the greatest dignity, and the court consents to the implementation of the compassionate care plan on her behalf.
3. It is not in Indi's best interests to continue to be intubated and invasively ventilated, she will be extubated as soon as practicable, and no later than 7 days from the date of this order (the exact day to be determined by Indi's treating clinicians, in consultation with her parents), and the court consents to the withdrawal of intubation and invasive ventilation on her behalf.
4. It is not in Indi's best interests (once extubated) to again be intubated and provided with any aggressive care or painful interventions including (but not limited to) blood tests, inotropic support, cardiopulmonary resuscitation, bag/mask ventilation or any new vascular or intraosseous access, and the court consents to this ceiling of care on her behalf.
5. It is in Indi's best interests to be provided with non-invasive ventilation (including High Flow Nasal Cannula, CPAP, or BiPAP), as clinically indicated, for a period of up to 7 days post extubation, and the court consents to this treatment on her behalf.
6. Non-invasive ventilation will be provided to Indi in accordance with paragraph 5 above unless:
i) Indi shows any sign of distress (based on clinical judgment), such that non-invasive ventilation will cease post extubation before 7 days expires; or
ii) There is a significant improvement in Indi's overall clinical presentation (for instance if she is weaning off non-invasive ventilation and would only need a short extended time, based on clinical judgment) such that 7 days may be extended. Once Indi is weaned off non-invasive ventilation, this will not be restarted.
7. If Indi continues to require non-invasive ventilation after a period of 7 days post extubation (and paragraph 6(2) does not apply), it is in her best interests to be provided with compassionate care only, including any appropriate pain relief, in accordance with the compassionate care plan dated 9 October 2023, and the court consents to the implementation of the compassionate care plan in such circumstances on her behalf. For the avoidance of doubt, this does not prevent Indi's treating clinicians continuing to provide non-invasive ventilation to Indi after a period of 7 days post extubation (in accordance with paragraph 6(2) above), if, in their clinical judgment, it is appropriate so to do, but they cannot be compelled to do so.”
Mr Quintavalle in seeking permission to appeal on behalf of the applicant Dean Gregory (‘the father’), was in both his opening and closing remarks frank as to his position saying that the father accepted that the decision that the judge had made now reflected in the declarations and order set out above ‘may well be right’ and that he was not saying that the judge had been wrong in his conclusion, but rather that absent the father having adduced his own independent expert evidence, the judge did not have a sufficient evidential basis upon which to reach his conclusion, the more so in such a serious case.
For this court to grant permission to appeal, it must be persuaded that an appeal against the making of that declaration would have a real prospect of success or that there is some other compelling reason for an appeal to be heard: CPR 52.6. If that test is not satisfied, permission must be refused.
Background
It was known before her birth that Indi had serious health difficulties and in particular that she had a hole between the two main chambers of her heart. After birth it was almost immediately found that her heart had a tetralogy of Fallot which is a combination of heart defects. This was then followed by a diagnosis of intestinal malrotation for which she underwent surgery. In June 2023 the devastating diagnosis of Combined D-2,L-2 hydroxyglutaric aciduria, a mitacondrial condition was made. In summary, Indi suffers from the following disorders:
i) Combined D2, L-2 hydroxyglutaric aciduria, a metabolic disorder that causes progressive damage to the brain. The disorder is characterised by epileptic encephalopathy, respiratory insufficiency, abnormalities in the brain, developmental arrest, and early death;
ii) Severe bilateral progressive ventriculomegaly which lead to enlarged brain ventricles from a build-up of spinal fluid;
iii) Tetralogy of Fallot which affects normal blood flow through the heart;
Indi is provided with multi-organ support and has the highest level of intensive care, that is to say one to one care 24 hours a day.
The judge set out the progress of Indi's various medical conditions. She has been on full life support since 6 September 2023 and is critically ill, intubated, ventilated, and sedated. What is uncontroversial is that the nature of her various conditions has meant that this tiny baby has, all her short life measured in months not years, undergone extensive invasive treatment in order to keep her alive. This has included surgery for intestinal malrotation, the fitting of a shunt in her brain to assist with the build-up of fluid and the drilling of a needle into her bones on numerous occasions to deal with her challenging IV access. On eight occasions she has required PICU or NICU ventilation, she has suffered from frequent and serious desaturation episodes and on three occasions she has had Cardiopulmonary Resuscitation (‘CPR’) when she went into cardiac arrest. On at least two occasions she had blood transfusions. It is now too dangerous for an MRI scan to be carried out in order to see the extent of further deterioration of her brain.
It is common ground that the Trust have sought advice both nationally and internationally from a range of experts and have been open to and attempted novel and experimental treatment, none of which has succeeded in arresting the downward trajectory of her condition.
Following a serious desaturation episode on 6 September 2023, Indi was fully intubated and has been intensely ventilated ever since. The evidence from the clinicians who gave evidence before the judge was that the current level of intensive care might prolong her life for a few weeks or months, whereas without such treatment her life expectancy can be measured in days or a week or two.
Pain:
No parent would wish to see their child in pain and this father is no different. In his composed and dignified evidence before the judge, he expressed his belief that Indi experiences pleasure and he was adamant that she does not experience significant pain. His view is that ‘ any minor distress is outweighed by the benefit from continued life’. Unhappily that understandable view is contrary to the overwhelming evidence. The judge set out the evidence of Dr E at [32] vii:
“Dr E has himself observed episodes of distress and agitation, which the bedside team sees multiple times a day. The current treatment causes [Indi] pain, exposing her to harmful procedures and therapies which provide no long-term benefit. She displays signs of distress during interventions (such as handling, suctioning, use of IV lines, blood tests) and reacts to painful stimuli, including crying (tears well up in her eyes), increased heart rate and mottled skin, wincing and gasping. These episodes of distress can last up to 10 minutes.”
The judge also set out the evidence of one of the nurses at [36]:
“I asked to hear from one of the nursing staff who was present in court, but had not provided a witness statement. Nobody objected. She told me that [Indi] is distressed by the various interventions. She struggles to breathe, winces, coughs and her eyes fill with tears. This takes place several times a day, often lasting several minutes, in response to medical interventions.”
The judge held at [43]:
“I take the view that the parents do not recognise the pain she is suffering, perhaps because, as the Guardian put it,...
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