An update from a regular series written by Mr Robert Wheeler, director, department of clinical law, where he considers various aspects of clinical law that our nursing staff, medical staff and other professions rely on when caring for patients.

In Bradford Children and Families Trust v Doncaster and Bassetlaw Hospitals NHSFT & Ors [2025] EWHC 3311, the prospect of the resuscitation of F, a child with non ketotic hyperglycinaemia (NKH) was considered.

Following a full-term delivery, F was severely ill at birth in April 2025, leading to a stroke, and then seizures. After ventilation for several weeks, genetic testing and imaging led to the diagnosis of NKH. The court was told that the condition is life-limiting, although the ‘… many different mutations of the condition…preclude...a clear answer to F’s life expectancy.’ The quality of his life would be affected, resulting in complex needs, seizures, and developmental delay.

F had become the subject of an interim care order during the first month of his life, and latterly a final care order, together with his 10-year-old sibling. F’s care plan made provision for foster care and contact with his mother and father.

Given his profoundly disabling genetic condition F’s clinicians and parents had agreed, prior to his removal from the ventilator at the end of April 2025, that a Children & Young Persons Advance Care Plan (CYPACP) which incorporated a Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) form would record their agreed position: That a ‘do not resuscitate notice… in the event of his deterioration…’ would be placed in his medical records. However, the applicant local authority, acting through the Bradford Children and Families Trust did not feel able to agree to the do-not-resuscitate notice, prompting it’s application on 30^th October 2025 to the Family Court for a declaration that the contents of the ReSPECT form and associated CYACP were in F’s best interests.

At the time of the application, F had been living with his foster family for 3 months. He was having daily seizures but was considered to ‘…have done well to get to this stage’, given his very guarded prognosis. The consultant paediatrician overseeing his care in the community considered that the ReSPECT form ‘…continues to be appropriate.’

At the first Family Court hearing the judge was invited to agree that the ‘do not resuscitate’ notice was in F’s best interests, but McKendrick J declined and adjourned, noting that the clinical evidence supporting the notice was outdated (3 months old) and insubstantial. At the subsequent hearing in December 2015, the court heard that F had made ‘…no (developmental) progress and still functions at the level of a 4–6-week-old, with an occasional smile and intermittent vocalisation…he doesn’t have safe swallow, nutrition via nasogastric tube.’ He occasionally opened his eyes when disturbed but was unable to fix on faces and had ‘…no evidence of a social smile… reduced muscle tone, regular myotonic jerks and spasms with an exaggerated startle response…no head control when held upright.’ The unanimous view was that F’s prognosis was very poor; ‘…mother and father confirmed their understanding and agreement with the previously- completed ReSPECT form, also agreeing that ‘…in the event of F’s clinical deterioration he would be provided with palliative/comfort (care) and would not receive chest compressions, defibrillation, cardiac/ALS drugs and intensive care admission. The local authority agreed with these four limitations on F’s treatment, removing the requirement that the court should come to a decision as to whether these therapies were in F’s best interests. Counsel for the LA noted that the ‘CYPACP and ReSPECT forms are not legally binding and should circumstances change…(whereby) on some future date…these treatments were not only clinically indicated …but were also in his best interests… (the local authority) is not bound by the record of agreement in the CYPACP. The court agreed, concluding that the ‘… CYPACP is in any event only a record of discussion…’ If circumstances changed, perhaps in terms of the need for non-invasive ventilation, consultation with those with parental responsibility should follow; as would, if necessary, a further application to court.

Notwithstanding legal status, the ReSPECT form is of great value, for every age group. This provides information relating to, amongst other things, the wishes and feelings and preferences of patients and /or their families which must be considered prior to making clinical decisions.

Mr Robert Wheeler
Department of clinical law
March 2026