CDE, R (on the application of) v NHS North East London Integrated Care Board & Anor [2026] EWHC 2109 (Admin)
This judgment was handed down remotely by circulation to the parties' representatives by email and release to The National Archives. The date and time for hand down is deemed to be 10am on Friday 7 August 2026.[2026] EWHC 2109 (Admin)Case No AC-2026-LON-002070
IN THE HIGH COURT OF JUSTICE
KING’S BENCH DIVISION
ADMINISTRATIVE COURT
Venue Royal Courts of Justice, Strand, London, WC2A 2LLDate 5 August 2026
Before
DEPUTY HIGH COURT JUDGE NIGEL COOPER KC
Between
on the application of CDEClaimantNHS NORTH EAST LONDON INTEGRATED CARE BOARDDefendantLONDON BOROUGH OF TOWER HAMLETSDefendantGUY’S AND ST THOMAS’ NHS FOUNDATION TRUSTInterested PartiesGREAT ORMOND STREET HOSPITAL FOR CHILDREN NHS FOUNDATION TRUSTInterested PartyEDC as litigation friend for ClaimantKATHERINE BARNES (instructed by DAC Beachcroft) for First DefendantSAM FOWLES (instructed by Hill Dickinson) for Second DefendantHearing Hearing dates: 23 July 2026JUDGMENT
DHCJ Nigel Cooper KC:
[1]This is my judgment on the Claimant’s renewed application for permission to seek judicial review of the Defendants’ joint response dated 03 February 2026 setting out the provision they intend to provide for the care of the Claimant (hereafter “CDE”).[2]CDE is 15, non-verbal, severely sight-impaired, life-limited and medically fragile. He has Lowe syndrome and requires complex medical care. He was in hospital from 11 April 2026 until 07 July 2026. After ten days at home, he was re-admitted to hospital because of severe pain and deterioration which could not be managed at home. As at the date of the hearing, he remains an in-patient with palliative care input.[3]The First Defendant is the integrated care board with responsibility for the provision of health care to CDE.[4]The Second Defendant is the local authority responsible for delivering short breaks and respite care for CDE[5]The First and Second Interested Parties are hospital trusts who are or have been responsible for providing medical care to CDE but no claim is advanced against either Interested Party.
Background
[6]For approximately nine years until 17 December 2025, CDE had access to specialist hospice care through Richard House, which provided specialist hospice short breaks and formed part of CDE’s crisis safety net. Unfortunately, Richard House closed in December 2025. In a decision dated 03 February 2026, the Defendants set out what provision they intended to provide to CDE for his health and social care needs going forward. CDE seeks judicial review of that decision on the basis that the Defendants have failed to provide a finalised written operational plan constituting a written, child-specific and operationally deliverable pathway for CDE. The claim for judicial review was filed on 02 May 2026.[7]Permission for Judicial Review was refused on paper by DHCJ Vikram Sachdeva KC on 15 June 2026. I adopt below his summary of the claim for judicial review as issued. i) CDE alleges that the Defendants have failed to discharge their public law duties by securing a written child specific and operationally deliverable pathway for a disabled, non-verbal, medically fragile and life-limited child. ii) The N463 summarises CDE’s complaint as “the Defendants have accepted elements of provision in principle, including social-care-funded short breaks and health-funded hospice provision but their recent responses identify further meetings, assessments, provider availability and further development of a Universal Care Plan rather than a finalised written operational plan”. iii) CDE’s Grounds and N463 contained three points(1) illegality – the defendants have failed to secure, document and implement operationally deliverable provision for a disabled child with assessed specialist short-break and health-funded hospice needs;(2) irrationality – the current position identifies fragmented components of care but no coherent pathway for respite, palliative/end of life care, urgent escalation and post-discharge support and(3) procedural unfairness, failure to give reasons and identify ownership.[8]Each Defendant denies any liability to the CDE. Their respective cases in summary are: i) The First Defendant contends that the claim is unarguable because it has already made suitable arrangements for the meeting of the Claimant’s health needs for which it is responsible. There is no legal obligation for the First Defendant to provide the detailed written plan sought by the Claimant. The Claimant already has a Universal Care Plan (“UCP”) which can be updated to better reflect his current care arrangements. However, the production and maintenance of a UCP is not a commissioning matter for which the ICB is responsible but rather a task for the Claimant’s treating clinicians. ii) There has been no failure by the Second Defendant to provide immediately available short break or respite care. The Second Defendant has made arrangements for short term respite care either at a hospice or by provision of care at home.[9]The Claimant’s application for permission to seek judicial review was considered on paper by DHCJ Vikram Sachdeva KC. By an order dated 15 June 2026, he refused permission. His reasons for refusing permission were as follows: i) Ground 1: there is no legal obligation on either Defendant to provide the sort of “operationally deliverable” plan sought by the Claimant. An adequate respite plan has been provided with 18 nights overnight care Haven House. ii) Ground 2: although there is no evidence that end-of-life care is imminent, there is palliative care open to the Claimant including Haven House and support by the community nursing team, the paediatric palliative care team at the lead hospital and by a fast-track package of care at home if requested. The current palliative care planning, whilst containing elements which are yet to be finalised, is not arguably irrational. There is no obligation to provide the detailed palliative care plan sought by the Claimant. There is no evidence to suggest that suitable palliative care will not be available for the Claimant. iii) Ground 3: there was no legal obligation to identify an operational lead responsible for coordinating the interface between social care-funded response, health-funded hospice provision, palliative/end of life planning, urgent escalation, hospital provision and post discharge support. Nor has there been a failure to provide sufficient information to the litigation friend to enable her to understand what provision is available, who is responsible for providing it, when it will start, what happens after discharge and how CDE will be kept safe in a crisis. iv) The references to the ECHR and PSED and to future admissions, and parent-carer safety are not pleaded as separate grounds of review but as providing support to the three grounds already pleaded. These matters do not add anything to the arguments discussed above.[10]By an order of DHCJ Simon Tinkler dated 28 June 2026, the renewal hearing before me was to be listed for a renewal hearing on or before 31 July 2026. Further the Claimant was permitted to file short updating evidence comprising(a) the most recent agreed Advance Care Plan/ReSPECT dated 11 May 2026,(b) any short clinical update from GOSH if available or requested by the Court;(c) the current respite and safety net position and(d) a short statement from CDE’s father concerning practical family support, his work commitments and the extent of his ability to provide 24 hour care or take over if CDE becomes unwell or require complex support.[11]CDE lodged further updating evidence in accordance with the order of DHCJ Simon Tinkler, which I have considered carefully.[12]By her form 86B with attached grounds for renewal, CDE challenges the refusal of permission for judicial review on the grounds which are summarised below: i) The claim was misunderstood because the judge considered that CDE was asking the court to choose between hospice providers whereas CDE was challenging the failure of the Defendants to make and implement lawful decisions showing how the previously identified provision would be delivered, reassessed, converted or replaced. ii) As against the First Defendant, the Defendant has not shown that it has commissioned, arranged, timetabled, operationalised and made available in practice, the health-funded elements of CDE’s pathway. iii) As against the Second Defendant, the Defendant has not identified how the respite care is to be delivered, what provision is relied upon on discharge and what happens if the route is not available or reliable. iv) The Defendants’ materials identify 18 social-care funded nights and 12 health funded nights but does not clearly explain the present legal and practical position after Richard House children’s hospice ceased provision and the Demelza children’s hospice provision changed. v) The Defendants have failed to meet CDE’s legitimate expectations, act fairly or provide reasons when care from Demelza House was not available for more than five nights which had already been agreed. vi) The Defendants have not carried out lawful reassessments or made reasoned decisions when arrangements have been withdrawn, reduced, converted or substituted. CDE’s complaint is specifically addressed to what he says is a failure to provide an equivalent level of care to that previously provided by Richard House. vii) CDE maintains his reliance on Articles 2 and 8 of the ECHR and PSED.[13]The oral permission hearing took place before me on 23 July 2026. I received skeleton arguments from CDE and First Defendant and heard oral submissions from EDC on behalf of CDE and counsel for the First and Second Defendants. I reserved judgment(i) to allow the parties sufficient time to make their oral submissions and(ii) to allow me to consider properly the permission hearing bundle which only reached me at the start of the hearing.[14]Since the paper decision to refuse permission for judicial review, matters have moved on. The Claimant records in her skeleton argument and repeated in her oral submissions that: i) Any issue over the ordinary home to specialist care route has been materially resolved. ii) A meeting with the hospice Haven House on 20 July 2026 has further narrowed matters with no exclusive hospice choice being required. iii) The live dispute concerns the delivery of the Second Defendant’s 18 nights of hospice care, the health-funded offer, whether four-hour home sessions meet the overnight function, clinical responsibility if EDC leaves, hospice suitability and contingency if CDE deteriorates, is too unwell for hospice or EDC cannot care. Hospice to Evelina transfer and the familiar care package remain material safety questions.
Factual Background
[15]CDE sets out the factual background on which he wishes to rely for the purposes of this renewal hearing at paragraphs 14 to 24 of his skeleton argument for this hearing. In particular, he points to the following matters: i) That there were two occasions on which his family arranged private ambulance transfers due to their concerns about his medical needs. ii) That no respite care has been provided since the closure of Richard House. iii) That EDC has not yet been able to have the surgery she requires. iv) That EDC required emergency mental health attendance.[16]The judicial review claim was lodged in respect of the Defendants’ decision as to care arrangements for CDE dated 03 February 2026. A further child and carer review for CDE was carried out by the Second Defendant on 21 May 2026 and the papers lodged by CDE for the renewal hearing included an Advance Care Plan dated 02 July 2026. It is also clear from the papers that there are on-going discussions and reviews concerning CDE’s health and social care between CDE’s family (especially EDC), the Defendants and the providers of CDE’s health and social care, including a reassessment of the Claimant’s continuing care package on 22 July 2026.
Legal Framework
[17]I have in mind, that the test at the permission stage is whether a claim is arguable with a realistic prospect of success; Sharma v Browne Antoine [2006] UKPC 57.[18]So far as the First Defendant is concerned, s. 2 of the National Health Service Act 2006 provides that integrated care boards are responsible for commissioning NHS services. Section 3 of the NHS Act sets out the NHS services that integrated care boards are required to commission to the extent they consider they are necessary to meet the reasonable requirements of the people for whom they have responsibility. These include(i) medical services other than primary medical services(ii) nursing and ambulance services,(iii) such other services or facilities for palliative care as the board considers are appropriate as part of the health service,(iv) such other services or facilities for the prevention of illness, the care of persons, suffering from illness and the after-care of persons who have suffered from illness as the board considers are appropriate as part of the health service and(v) such other services or facilities as are required for the diagnosis and treatment of illness.[19]In short, the First Defendant is required to meet the Claimant’s reasonable health needs.[20]Continuing care for children is governed by non-statutory guidance in the form of the Department for Health’s “National Framework for Children and Young People’s Continuing Care 2016” (“the Framework”). Part 1 of the Framework outlines the typical process to decide on a package of continuing care for a child which comprises three stages (i) assessment, (2) decision making and (iii) development of a package of care. The framework recognises that the package may be jointly funded and provided by the relevant care board and relevant local authority.[21]The First Defendant states that with regard to palliative care, it makes its commissioning decisions based on guidance widely considered to be best practice: the “Together for Short Lives” guidance (“the TFSL Guidance”), which refers amongst other services to the need for palliative care.[22]The statutory obligations to which the Second Defendant is subject are found in Part III and Schedule 2 of the Children Act 1989, the Breaks for Carers of Disabled Children Regulations 2011 and s. 11 of the Children’s Act 2004. A helpful summary of these duties and relevant principles of application is found in R (MM) v London Borough of Hounslow [2015] EWHC 3731 (Admin) at [8] to [10].[23]The 2011 Regulations provide for, inter alia, the following duties: i) To provide insofar as practicable a range of services which is sufficient to assist carers to continue to provide care or do so more effectively. ii) In doing so, the Council must have regard to the needs to carers.[24]The nature of the duties conferred by the Regulations is helpfully discussed by Sir Brian Keith in MM at [43].[25]I do not propose to set out here the relevant provisions of the ECHR or say more about the nature of the PSED but have considered them for the purposes of my decision.
Decision
[26]I have considered carefully the materials provided to me for the renewal hearing and the written and oral submissions of the parties. I refuse permission for judicial review.[27]Having regard to the legal framework governing the obligations of the Defendants for CDE’s health and social care and the evidence as to CDE’s circumstances and the provision of care for him, there is no arguable case that either Defendant is in breach of their obligations to him and his family.[28]I agree with DHCJ Vikram Sachdeva KC that: i) There is no legal obligation on either Defendant to provide the type of “operationally deliverable plan” sought by the Claimant. There is an adequate respite plan in place providing for overnight care at Haven House or for care to be made available at home at the request of EDC. ii) There is palliative care available to CDE. There is also now an Advanced Care Plan in place as mentioned above. iii) There is no legal obligation to identify an operational lead responsible for coordinating the interface between social care-funded response, health-funded hospice provision, palliative/end of life planning, urgent escalation, hospital provision and post-discharge support. Nor does the evidence establish a failure to provide sufficient information to EDC to enable her to understand what provision is available, who is responsible for providing it, when it will start, what happens after discharge and how the Claimant will be kept safe in a crisis. iv) I also agree that references to the ECHR and PSED do not add anything to the grounds advanced by CDE in support of his claim.[29]Turning to the specific grounds on which the application for renewal is made: i) I am satisfied that DHCJ Vikram Sachveda KC understood that the claim was not about a choice between different hospice providers but was about whether the Defendants had made lawful decisions for the provision of health and social care to CDE including its assessment and delivery. ii) The evidence establishes that so far as the First Defendant is concerned, there is no failure to provide for the health-funded elements of CDE’s pathway. There is a package of NHS care available for CDE, which has been assessed, planned and either being delivered or is available for delivery. To the extent that the plan for CDE’s care requires reassessment due to material changes in CDE’s condition, the evidence shows that it is being reassessed. iii) The evidence also establishes a similar position in relation to the Second Defendant, namely that there is a plan for the delivery of social care for CDE and his family, which is responsive to material change and is available as required by CDE and EDC. iv) I am satisfied on the evidence that to the extent arrangements for CDE’s care needs requires cooperation and working together between the First and Second Defendants, that cooperation and joint working is in place. v) Likewise, I am satisfied that the Defendants have put in place through the package of care available with, inter alia, Haven House, Demelza and the provision for home care, a package which meets CDE’s requirements for 18 social care-funded nights and 20 health-funded nights. vi) I am also satisfied that the evidence (as discussed above) establishes that there is no arguable case that either Defendant is withdrawing, converting or substituting elements of CDE’s care package without lawful reassessment and reasoned decision. vii) As already indicated, Articles 2 and 8 of the ECHR and PSED do not provide CDE with any separate sustainable ground of challenge against either Defendant.[30]To the extent that CDE maintains that the Defendants are in breach of their legal duties because they have failed to provide a more detailed written operational plan, there is no legal obligation on either Defendant to provide such a plan.[31]I have taken into account the evidence of occasions when the family have paid for private ambulance transfers for CDE, the fact that CDE and his family have not had any respite care since the closure of Richard House and EDC’s on-going need for an operation as well as the evidence of her need for mental health support. The evidence does not, however, establish that these matters raise an arguable case as to a breach of their legal obligations by either Defendant. In particular, it is clear that immediately after the closure of Richard House, it took all parties time to agree and put in place an alternative package of care but the evidence does not suggest that this time was unreasonably extended due to any breach of their statutory obligations by either Defendant. Further CDE has required prolonged hospital stays this year.
Conclusion
[32]For all the above reasons, I refuse permission for judicial review.
Costs
[33]The order of 15 June 2026 refusing permission for judicial review requires the CDE to pay the First Defendant’s costs of preparing their Acknowledgement of Service and Summary Grounds of Defence summarily assessed in the sum of £5,000. Ms. Barnes for the First Defendant informed me at the start of the oral hearing that the First Defendant no longer sought those costs. Accordingly, I revoke the costs order made in favour of the First Defendant so that there is no order requiring the Claimant to pay the First Defendant’s costs of preparing their Acknowledgement of Service and Summary Grounds of Defence. The Second Defendant does not seek its costs of preparing their Acknowledgment of Service and Summary Grounds of Defence.
Anonymity
[34]By an application dated 24 June 2026, CDE seeks to vary the anonymity order originally made by the Court of its own motion so as to ensure that EDC is not in breach of the anonymity order by discussing the proceedings confidentially with certain categories of individual identified in the draft order sent with the application. Neither Defendant opposes the variation of the order. In those circumstances and having considered whether it is appropriate to vary the order as set out in the draft order, I will make an order in the terms sought save that given no party seeks their costs associated with the application, I will make no order as to the costs of the application.