R (on the Application of A, by his Litigation Friend, B) v North Central London Integrated Care Board

Hearing date: 20 September 2024

Approved Judgment

This judgment was handed down remotely at 10.30am on 23 October 2024 by circulation to the parties or their representatives by e-mail and by release to the National Archives.

INTRODUCTION

This is an application for judicial review that concerns the provision of continuing healthcare for the Claimant, A. A is a severely disabled 11-year-old boy born in October 2012. The Claimant has a rare SLC13A5 Citrate Transporter Disorder that is, sadly, life threatening and life limiting. As a result of his condition, the Claimant has severe epilepsy that places him at risk of Sudden Death in Epilepsy (hereafter ‘SUDEP’), episodes of atonia that place him at risk of suffocation and a severe learning disability, communication and mobility disabilities. The Claimant is represented by Mr Ian Wise of King's Counsel and Mr Ollie Persey of counsel. There is an anonymity order in force.

The Claimant is eligible for NHS Children and Young People's Continuing Care (a package of care provided by the NHS by reason of the intensity of a child's health needs, hereafter ‘Continuing Care’) and has been in receipt of such care since 25 June 2015. The Defendant is the North Central London Integrated Care Board (hereafter ‘ICB’) and is the responsible commissioner. Its Childrens Complex Care Team commissions individualised care for children with complex health needs that cannot be met by the NHS's universal, and specialist commissioned services. In this case, clinical case management is provided through the Whittington Health Continuing Care Clinical Team of Whittington Health NHS Trust. The Defendant is represented by Mr David Lawson of counsel and Mr Jake Rylatt of counsel.

The Claimant's application for judicial review has been listed on an expedited basis for a rolled up hearing. The Claimant pleads three grounds (although the third ground is more accurately described as a remedy):

i) The Defendant is in ongoing breach of its duty to ensure that the Claimant has a lawful health care plan (at other points in the documents the term “care plan” is used, but the Claim Form uses the term “health care plan”).

ii) The Defendant's decision to terminate the then current registered care provider's contract on 9 July 2024 and to proceed to replace them with a new registered care provider on 10 July 2024 was irrational.

iii) The Claimant's parents are paying for his healthcare package at a cost of c.£10,000 a week because the Defendant has failed to arrange a lawful healthcare package for the Claimant and the Claimant's family are thereby entitled to restitution on the ground of unjust enrichment.

The Claimant also has an Education, Health and Care Plan (hereafter ‘EHC plan’), which is maintained by the London Borough of Haringey. The London Borough Haringey is an Interested Party in these proceedings, represented by Ms Fiona Mullin of counsel. The Interested Party has issued care proceedings in respect of A. The application for a care order is allocated to me in the Family Court and the Interested Party is now seeking permission to withdraw those proceedings. That application will be determined following the determination of these judicial review proceedings.

In determining this matter, I have had the benefit of reading the bundle and supplementary bundle prepared for this hearing, together with the comprehensive and helpful Skeleton Arguments of Mr Wise and Mr Persey and Mr Lawson and Mr Rylatt. Mr Wise and Mr Lawson also made oral submissions. I reserved judgment and now set out my decision and the reasons for it.

RELEVANT BACKGROUND AND EVIDENCE

The relevant background and evidence requires to be set out in a little detail. As I have noted, A was born in October 2012 and thereafter diagnosed with a rare SLC13A5 Citrate Transporter Disorder. A is currently under the care of consultants at Great Ormond Street Hospital and UCL Hospital. The following relevant matters concerning A's medical condition and its consequences can be drawn from the evidence before the court, including a report dated 6 March 2023 from Dr Christina Petropoulos, Consultant Paediatrician at UCL Hospital's Children and Young People's Seizure Clinic, who has been caring for A since infancy when he presented with neonatal seizures:

i) The SLC13A5 deficiency has resulted in A suffering early infantile epileptic encephalopathy and multifocal epilepsy. His seizures are refractory (i.e. not controlled by anti-epileptic medication) and he has had convulsive status epilepticus since birth with a history of sub clinical non convulsive status epilepticus. A exhibits all seizure types, with the majority being tonic-clonic seizures. Due to the severity and length of the latter, there is an emergency plan requiring the administration of emergency Buccal Midazolam as there is a significant health and mortality risk to A if his seizures are not managed. He is at high risk of SUDEP. The Defendant accepts that A is at high risk of SUDEP.

ii) A's seizures have multiple triggers, including illness, tiredness, temperature, pain, sensory and environmental factors and certain foods. Following prolonged seizures, A experiences a loss of his already limited skills for days, weeks, months and, in the case of extended status epilepticus, permanently. The areas affected include his sleep, tone, coordination, gross and fine motor skills, communication, eating and drinking, sensory and emotional/ behavioural regulation/modulation. Dr Petropoulos considers A's seizure disorder to be “severe and unpredictable”, life limiting and life threatening. To manage the severity of his seizures, A is described as requiring close contact care day and night.

iii) A also has gross and fine motor disorders and cannot stand or walk independently. He exhibits dystonia and muscle weakness. A can exhibit weakness and loss of muscle tone lasting several minutes to hours. The onset of muscle weakness can cause A to collapse suddenly during the day and at night when asleep, he can sink face down into the pillow or mattress, risking suffocation. A also suffers from hypotonia and has a diagnosis of oropharyngeal dysphagia, placing him at increased risk of choking and aspiration. A has hypermobile joints and reduced feeling in his body. There is concern about subluxation of his hips and out-turning of the left leg. He has significant ankle pronation. A has amelogenesis imperfecta and teething pain exacerbate his seizure frequency. He suffers from pain dysregulation and does not show pain in the usual way. He is doubly incontinent and is not consistently aware that he has wet or soiled his pad.

iv) A also has significant developmental needs as a result of his condition. A exhibits global developmental delay and has a diagnosis of Severe Intellectual Learning Disability and Severe Language and Communication Disorder. He has significant difficulties with executive functioning and has no consistent or reliable form of communication. He cannot consistently express his basic needs. A demonstrates some autistic features. He struggles with everyday transitions. A also has significant sensory and emotional regulation and modulation difficulties and significant behavioural difficulties. He has food intolerances and allergies and he has difficulties with constipation managed with a daily plan of diet, mobility exercises, mobilisation and massage. A is unable himself to undertake any basic self-care needs and cannot self-feed, dress, wash, brush his teeth, comb his hair, blow or wipe his nose.

It is important to state that A is, of course, much more than the sum of his disabilities. In her first statement, the mother describes A as having a smile that draws people to him, the most infectious laugh and a cheeky sense of humour. When well, his mother describes him as engaged with everything and everyone around him and that he shows a strength of character that is admirable and, at times, challenging. A loves music, with tastes that are described as eclectic. When supported effectively, A is a happy child, proud of his advances and achievements.

The court has before it a number of documents that deal with A's needs arising from the foregoing matters. Specifically the report of Dr Petropoulos dated 6 March 2023, a letter from Dr Robert Robinson, Consultant Paediatric Neurologist at Great Ormond Street Hospital dated 14 August 2024, Nursing Clinical Judgment Statements dated 8 August 2024 and 20 August 2024, a further report from Dr Petropoulos dated 3 September 2024 and a report from Nerys Hughes, Occupational Therapist, highlighting the following:

i) Many of his seizure triggers are very particular to the Claimant and require specific training from existing care staff, professionals and parents.

ii) The Claimant requires two people to keep him in a position of physical safety when he has an aggressive tonic-clonic seizure. His oral secretions pool in his mouth and can require suction to minimise the risk of choking and aspiration.

iii) In circumstances where A's dystonia and muscle weakness/loss of tone can cause him pain, which is a significant seizure trigger, the episodes require immediate identification and management to prevent such an escalation.