F (A Child) (Medical treatment), Re

By way of a form C66, sealed on the 30 October 2025, the applicant local authority applies to invoke the High Court’s inherent jurisdiction to determine “whether or not the Local Authority are in agreement with the Do Not Resuscitate Notice continuing.” The proposed relief concerns an infant boy, born in April 2025, then aged six months. He is anonymised in this judgment as F to protect his identity and that of his family.

The local authority brought the application in circumstance where they had earlier issued care proceedings in respect of F (and his ten year old sibling). The care proceedings were heard in the Family Court sitting at Bradford. An interim care order was made on 29 May 2025. On 6 November 2025 District Judge Mitchell made a final care order in respect of both children. The care plan provided for F to be accommodated with foster carers and for contact to take place with his mother and father. They are the second and third respondents to this application. Counsel for the applicant told me that District Judge Mitchell encouraged the applicant to consider bringing this application.

F was born with a profoundly disabling genetic condition known Nonketotic Hyperglycinemia (hereafter “NKH”). His treating clinicians and his parents agreed that, given his diagnosis and prognosis, an advanced care plan/RESPECT form would be agreed to record the agreed position that a “Do Not Resuscitate Notice” would be placed in F’s medical records. The applicant local authority did not feel able to consent to this. The matter therefore came to court.

On 31 October 2025, Henke J made directions on the papers and joined F as a party and appointed a Cafcass officer as his Guardian, noting in the order that it was preferrable if the Guardian appointed in the care proceedings could act in this application. She made detailed directions for the filing of further evidence and listed the matter before me on 17 November 2025 with a time estimate of one day. The anticipation being that this would be the final hearing.

F was born at 36 weeks gestation via a caesarean section. He was significantly unwell at birth and went on to suffer a stroke, resulting in seizures. F spent a number of weeks on a ventilator. F was moved from the hospital where he was born to a Royal Infirmary to receive more specialist care. Following a series of medical tests including blood testing, MRI and CT scan F was diagnosed with a genetic condition NKH. Sadly, F’s condition is considered terminal or life limiting. I am told that because there are many different mutations of the condition there is no clear answer to F’s life expectancy. The condition is such that his quality of life will be affected and will result in him having complex medical needs and suffering seizures causing developmental delay.

Prior to F’s removal from the ventilator his mother and father consented to an advance care plan, including a ‘Do Not Resuscitate notification’ in the event that the child’s condition were to deteriorate. The advance care plan and RESPECT form are filed in the evidence.

On 23 April 2025 F was taken off the ventilator and was able to breathe by himself. By the start of June 2025 there was consideration to discharging F from hospital later the same month. Further complications ensued concerning his feeding. A foster carer was identified for the child and the carer was able to receive instruction from the hospital to enable F’s care. F was discharged from hospital on 6 August 2025 and placed with experienced foster carers.

In support of the application for declarations the applicant filed evidence from a social worker involved in F’s life. It set out the background and concluded

“As [F] is a looked after child in the care of Bradford Children and Families

Trust, the Trust applies for a declaration pursuant to the inherent jurisdiction

of the High Court that the do not resuscitate notice and Advanced Care Plan

is in F’s best interests and is therefore lawful.”

The applicant having sought updating information from the child’s consultant who provided an email dated 13 November 2025 which set out the following;

“Having seen correspondence from other colleagues from the Metabolic and Neurology specialist services in [redacted], [F] continues to have significant development delay and ongoing daily seizures due to his Non-Ketotic Hyperglycinaemia. His medication doses have been adjusted according to his weight gain. As previously discussed a lot (most) babies with NKH die from their illness and associated encephalopathy in the first few weeks/months of life, and [F] has done well to get to this stage. His prognosis does remain very guarded however, and although very difficult to predict, he is still very likely to have a significant reduction in his life expectancy. Due to his underlying diagnosis, me knowledge of his current medical status based on reports from other teams, and the known prognosis of this condition, in my opinion the current DNR on [F] Respect form still continues to be appropriate and in his best interests.

This consultant planned to see F in his clinic on 24 November 2025. He had not seen F since early August 2025.

At the hearing on 17 November 2025 all parties were in agreement that the ‘Do Not Resuscitate Notice’ was in F’s best interests and I was invited to make a declaration determining the same. I declined to do so. The evidence in the form of an email from a clinician who had not assessed F for over three months was an insubstantial basis to underpin the relief sought, given the gravity of it and the consequences for F. Given F’s consultant planned to see him in clinic on 24 November 2025, I joined the first respondent NHS Foundation Trust as a party and directed F’s treating clinician to file and serve a detailed witness statement setting out F’s diagnosis, up to date prognosis and directed him to exhibit the advanced care plan with clarity in respect of the ceilings of treatment that the clinical team were proposing. I gave the first respondent permission to apply to vary or discharge the directions made. I directed the parties file further evidence in response and the Guardian set out her position in a position statement without the need for a full welfare report. I adjourned the matter to a hearing before me on 5 December 2025.

At the adjourned hearing the first respondent had complied with the directions made and filed very helpful witness statements from the lead consultant general paediatrician treating F and also a witness statement from a consultant community paediatrician who carried out the role as local paediatric palliative care lead for F. The clinical evidence provided this update on F, as follows:

Helpfully the clinical team sought the input from F’s treating consultant in paediatric metabolic medicine at a nearby children’s hospital. She said this in respect of F’s prognosis with NKH:

“Non-ketotic hyperglycinaemia (NKH) is a rare inborn error of glycine

metabolism. [F] has presented with features consistent with classic NKH,

i.e. epileptic encephalopathy and hypoventilation during the neonatal period.

His genetic testing showed he is homozygous for the severe mutation

p.Arg515Ser. All children with classical NKH have a profound neurodisability and seizure disorder. The seizures typically worsen in infancy and continue to progress and become intractable. The seizures are often resistant to the use of multiple anti-epileptic medications. Two other medications used to try to aid seizure management are sodium benzoate and dextromethorphan. The former is used to reduce glycine levels and the latter to block the glutamate binding site of the excitatory NMDA receptor. The ketogenic diet can also be used as an

adjunct to seizure management. At this time there are no curative treatment

options available so treatment if symptomatic. Gastrostomy feeding is required due to the unsafe swallow seen and other complications can include cortical blindness and orthopaedic problems such as scoliosis. Severe NKH is considered to be a life-shortening condition, but it is not possible to put a definitive timeframe on survival. It is appropriate for an advanced care plan and do not attempt resuscitation order to be in place given the severe neurodisability and seizure disorder absence of any curative treatment options.”

The unanimous clinical view was that F’s prognosis was very poor. The palliative care consultant set out the following respect of the advanced care planning, both in respect of what had happened in the past and in respect of the more recent discussions:

He then set out that he had met F’s parents on 24 November 2025 after the consultation with the treating clinician. He records they met and discussed the care plan and that the parents agreed that in the event of F’s clinical deterioration he would be provided with palliative/comfort and would not receive chest compressions, defibrillation, cardiac/ALS drugs and intensive care admission.

Importantly the mother and the father filed and served witness statements making clear they agreed with the clinical team. Pursuant to my directions I also received updating evidence from F’s foster carer which provided very helpful background.

The first respondent’s Trust position at the adjourned hearing was set out with customary clarity by Ms Scott, as follows:

“In the case of [F], the Trust’s position is that given his diagnosis and prognosis, the following treatments will NOT be offered to him in any event, because they would be clinically inappropriate:

a.

Chest compressions

b.

Defibrillation

c.

Cardiac/ALS drugs (usually in conjunction with chest compressions)

d.

Intensive care admission.

The consequence of this, is that this Court should not make any determination as to whether or not such treatment might be in [F]’s best interests – see for example Burke v General Medical Council [2005] EWCA Civ 1003 [2006] QB 273 at paragraphs 50 and 55; AVS v. A NHS Foundation Trust & ors. [2011] EWCA Civ 7 at paragraph 35 and Aintree [2014] AC 591, para 18.

With respect to the two remaining treatments to which those with parental responsibility do not consent on [F]’s behalf (namely non invasive ventilation and intraosseous access), the Trust can see some circumstances in which these treatments could be offered to [F], but take the view that given his condition and diagnosis, it is unlikely to ever be in his best interests for him to be provided with them. The Trust accepts however that in respect of those treatments, the Court could make a determination of [F]’s best interests.

It is important to note however that the CYCAP and RESPECT form are not legally binding and should circumstances change, and the Trust were to take the view on some future date that any of these treatments were not only clinically indicated (i.e. would be offered to [F]) but were also in his best interests, the Trust is not bound by the record of agreement in the CYCAP. In such circumstances:

a.

The Trust would consult with those with parental responsibility explaining their changed view in the usual way, seeking their consent to deliver the treatment that has been assessed as being in [F]’s best interests.

b.

In the event that agreement could not be reached, the Trust could make an application to the Court for determination of [F]’s best interests.”

The Trust’s written position was that the application was misconceived and unnecessary. The CYCAP is in any event only a record of discussion and the court was invited to dismiss the application.

Counsel representing the parents agreed with the updating clinical position.

Mr Saunders and Mr Hutchinson submitted the court should make declarations. The applicant re-asserted the reason it had brought the matter to court was based on the learning of King LJ (with the agreement of Gloster and David Richards LJJ) in Re C (Children) Child in Care: Choice of Forename) [2016] EWCA Civ 374; [2017] Fam 137 where it was held at paragraphs 97 and 98:

King LJ therefore concluded at paragraph 104 that:

The applicant therefore took issue with the first respondent’s criticism and in any event asked that I grant declarations.

At the conclusion of the hearing on 5 December 2025, I made the following declarations:

Sadly the medical evidence is very clear. F’s prognosis is bleak. His clinical team will not provide the four treatments set out in the paragraph above. This is understandable and is explained in the medical evidence set out above. I accept Ms Scott’s invocation of the well established common law position as set out in Burke in the judgment of the then Master of the Rolls at paragraph 55: “Ultimately, however, a patient cannot demand that a doctor administer a treatment which the doctor considers is adverse to the patient's clinical needs.” Ms Scott therefore contended therefore that no best interests decision arose and the court had no role.  

The first difficulty with that submission is that the consultant’s email of 13 November 2025 states that the RESPECT form is appropriate and in F’s best interests. It does not state the four treatments set out above will not be offered and therefore the issue of best interests does not arise.

The second problem is that both the RESPECT form and the CYCAP both contain this statement: “This person is less than 18 years old and those holding parental responsibility have been fully involved in discussing and making this plan.” In F’s case those with parental responsibility are the mother, the father and the applicant local authority. The local authority, mindful of Re C could not agree that the ceilings of treatment agreed between the clinician and the parents were appropriate without a court order. In F’s case, the CYCAP has a box ticked, incorrectly indicating that “those holding parental responsibility have been fully involved in discussing and making this plan.” The RESPECT does not have a box to tick but text has been entered by the relevant clinician which makes reference to the fact that these issues have been discussed with “the parents.” The notes record discussions from April to June 2025 and make no mention of the changed legal position on 29 May 2025, given the interim care order.

A third problem arises because neither the REPECT form nor the CYCAP fit with the (correct) legal analysis relied on by Ms Scott namely, they do not make the distinction between: (i) clinically inappropriate treatment/unethical treatment that clinicians are not offering and (ii) the separate question of treatment that may be offered but is not considered to be in the child’s best interests. This is not surprising because the RESPECT for and the CYCAP both state the following: “The RESPECT form is a clinical record of agreed recommendations. It is not a legally binding document.”

Ms Scott refers me to the National Institute for Health and Care Excellent (hereafter NICE) guidance document NG61 entitled: “End of life care for infants, children and young people with life-limiting conditions: planning and management.” This document provides the guidance behind the CYCAP. It is hugely helpful guidance for clinicians and provides excellent advice for them to deal with end of life arrangements for children. It makes fulsome reference to including parents. I have not heard full submissions on the status of NG61, but it does not appear to deal with this situation: namely a mother, a father and a local authority holding parental responsibility. That in turn may well explain why the CYCAP makes no mention on the standard form text of the form to a local authority with parental responsibility. It may also be explain the failure in F’s case to document the views of the applicant local authority.

Did this application have to be made? On the first respondent’s Trust’s ultimate case, such treatment would never have been offered. However, none of that is set out in response to the questions posed in the CYCAP form. Nor was that the Trust’s own written evidence at the time. In my judgement the applicant local authority was right to apply Re C and apply to court. However, it does seem to me that if NICE NG61 and the CYCAP and RESPECT forms provided guidance and posed the appropriate questions about local authorities who hold parental responsibility respectively, then the first respondent Trust and the applicant local authority would have carried out a proper consultation (including with the parents) which would have led the applicant local authority to understand that resuscitation was not being offered and therefore the applicant need not exercise its parental responsibility to consent, or not, to treatment. Instead the applicant local authority (and the parents) should have been informed, after appropriate consultation, and in writing, with reasons, that the resuscitation treatments were not being offered to F. That would have led the applicant local authority to have considered whether such a decision was amenable to an application for judicial review, rather than an application of the High Court’s inherent jurisdiction to consider best interests.

As is clear from the CYCAP and the RESPECT forms, none of this was recorded in respect of F. It is therefore understandable that an application was brought to court and given the application was made, the declaration made was appropriate in the specific circumstances of these proceedings. NICE may wish to consider whether the NG 61 guidance, the CYCAP and RESPECT forms require some revision to grapple with the situation presented here. Applications to the High Court (Family Division) should only be made when necessary, where a genuine best interests dispute arises.

In respect of the non-invasive ventilation and intraosseous access treatments, I decline to make any declarations. It is premature to consider whether these may be offered and if they are, whether they are in Fs best interests. This shall be a matter for the clinical judgement of the clinicians, as and when these issues may arise, in consultation with those who have parental responsibility.

I thank all counsel for their assistance.