University College London Hospitals NHS Foundation Trust & Anor v AB & Ors

I have been hearing an application by University College London Hospitals NHS Foundation Trust (“the Trust”) and NHS North Central London Integrated Care Board (“the ICB”) under the Mental Capacity Act 2005 in respect of a 30-year-old man AB.

By application dated 5 June 2025, the Trust and the ICB sought:

The parties to the proceedings are as follows:

On the evidence provided to date, it is unclear whether AB’s father has any current involvement in his life. Further information is still requested in this respect. AB also appears to have a sister who lives at home with him.

There is an ongoing safeguarding investigation being conducted by the London Borough of Enfield (“the Local Authority”) pursuant to s.42 of the Care Act 2014, arising from concerns regarding EF.

The declarations and orders are fully set out in a draft order and a detailed and revised care plan and conveyance plan is contained within the Bundle.

AB is now aged 30. He was born with a condition identified as meningo-encephalocele which disrupted the development of his brain. He has lived with severe disabilities ever since and was under the care of Great Ormond Street Hospital it seems until about 2014 when he was 20. He was then discharged to the care of the neurological and gastroenterological team at the Trust and the ICB became responsible for the delivery and/or funding of his care. He lives at home with his mother EF. AB has particularly complex needs and is totally dependent on others to meet his needs, including his nutritional and medical needs. He has a percutaneous endoscopic gastrostomy (“PEG”) tube for medication and fluids, inserted in 2016, which has not been changed to date. In 2017, AB was assessed by the ICB to have a primary health need. He is eligible for NHS continuing healthcare (“CHC”) funding and was assessed by the ICB to require a Personal Health Budget (“PHB”) of between around £14,200-£15,700 each month to meet his needs.

Since 2018, EF has been responsible for managing AB’s direct payments. AB was assessed by the ICB in October 2023 to require 2:1 care for 6 hours a day, and 1:1 care at all other times. There are ongoing issues regarding what care AB is actually receiving and what care he requires.

On 3August 2022 District Judge Batten appointed EF as AB’s Deputy for his personal welfare. The order includes:

“Upon the court being satisfied that AB lacks capacity to make various decisions for himself in relation to a matter or matters concerning his personal welfare and that the purpose for which this order is needed cannot be as effectively achieved in a way that is less restrictive of his rights and freedom of action.

It is ordered that

EF is appointed as deputy to make personal welfare decisions on behalf of AB that he is unable to make for himself subject to the conditions and restrictions set out in the mental capacity act and in this order.

This appointment will last until further order.

The court authorises the deputy to make the following decisions on behalf of AB if he is unable to make the decisions for himself when the decision needs to be made:

with whom he should live;

decisions on day to day care including diet and dress;

consenting to or refusing consent to medical and/or dental examination and treatment on his behalf;

the provision of care services;

whether he should take part in particular leisure or social activities; and

to make and conduct complaints about his care or treatment.

The deputy does not have authority to make a decision on behalf of AB in relation to a matter if the deputy knows or has reasonable grounds for believing that he has capacity in relation to the matter.

The deputy does not have the authority to make the following decisions or do the following things in relation to AB

to prohibit any person from having contact with him;

to direct a person responsible for his healthcare to allow a different person to take over that responsibility”

Over the past few years it appears that a rift has developed between the Trust, the ICB and EF in respect of AB’s care. The Trust and the ICB consider that EF has been obstructive and has prevented them from undertaking appropriate reviews of AB and his care. It is not entirely clear what EF’s position has been over that period albeit by 2024/2025 she had come to consider that the Trust and the ICB had been medically negligent and were harassing her. A more detailed account is contained within my consideration of the evidence and a very full chronology is set out within paragraph 13 of the position statement of the Trust/ICB prepared by Ms Sutton KC for this hearing. The inability of the Trust to review AB’s neurological and gastroenterological position and the ICB’s inability to review AB’s care needs ultimately led to the issuing of this application.

The application first came before me on 30 June 2025. EF attended remotely and applied for an adjournment as she was not legally represented and I granted her application and gave detailed case management directions to timetable the case to a final hearing before me on the 16 and 17 of July. One of those directions was for the ICB to visit AB to assess how he would be impacted by an inpatient hospital stay. When staff from the ICB attended at AB’s home on 7 July 2005, EF refused to allow them to visit AB, relying on her allegations of harassment as reason for denying ICB staff access. Consequently, the matter returned before me for an urgent hearing on 9 July 2025. By then the ICB had arranged for two learning disability nurses who were not employed by the ICB to undertake the visit. EF participated in this hearing again remotely. At the conclusion of the hearing I made an order which imposed duties on EF in her capacity as AB’s deputy, and which required her to make him available for the assessment. In the event the assessment took place, as did a visit by Mr Sherlock, who is a lawyer in the Official Solicitor's office and who has conduct of this matter.

A roundtable meeting took place on 15 July 2025 in which EF participated, and during which, it appeared that a very significant measure of agreement had emerged to the extent that EF appeared to agree with the substantive best interests decisions in terms of AB’s admission to the Trust for assessment of, and if necessary, replacement of the PEG, and admission to the neurology department at Hospital B for video telemetry EEG (if tolerated by AB) and his conveyance from home to hospital for those purposes.

However, although EF appeared to be in agreement with the substantive issues, she informed the advocates that she sought an adjournment of the hearing to seek legal representation. She had sent the court an email which was consistent with this, asserting that she had a right to legal representation at the hearing. In the case management directions made on 30 June 2025, I had directed that EF should attend the hearing in person. She had submitted at the urgent hearing on 9 July 2025 that she needed to attend remotely because of a medical condition. I stated that if this were pursued she would need to submit the relevant application and medical evidence in support. She said she would not be able to do so. Because of technical issues with the CVP link in my court on 15 July 2025, it did not appear as if remote attendance could have been facilitated in any event.

On the morning of 16 July 2025 EF did not attend in person or submit an application either to attend remotely supported by medical evidence or for an adjournment. Shortly after the hearing had commenced I was informed that an email had been received from a lawyer instructed by EF, seeking an adjournment. I adjourned the hearing until 2pm, by which time I had been able to consider the email communication from the lawyer and had been able to confirm that the technical issue had been resolved and so a CVP link could be made available. I refused the ‘application’ to adjourn for reasons which I explained at the time, but I directed that a CVP link be provided to EF so that she could participate remotely. EF chose not to attend (in person or remotely) either on the afternoon of the 16^tor on the morning of 17 July 2025, and so did not participate at all in the hearing. In the course of the hearing I heard from Dr Y, consultant gastroenterologist and Dr X, consultant neurologist. I also had detailed position statements from the parties and had been able to read statements from AB’s GP, the Office of the Public Guardian as well as the evidence from the Trust, the ICB, and the attendance note of Mr Sherlock on behalf of the Official Solicitor who had visited AB on 15 July 2025.

The hearing on 16 and 17 July 2025 has been in public subject to a transparency order dated 30 June 2025.

At the conclusion of the hearing I gave my decision granting the application made by the Trust and the ICB and supported by the Official Solicitor, and confirmed I would provide a reserved judgment.

The issues for the court to determine and the positions of the parties seem to be as follows:

The MCA 2005 sets out the statutory scheme in respect of individuals aged over 16 who lack capacity. Section 15 gives the court the power to make declarations as to whether a person lacks capacity to make a specified decision and the lawfulness or otherwise of any act done or to be done in relation to that person. Section 16 gives the court the power to make an order and make the decision on a person’s behalf. Section 48 gives the court discretion to make an order on an interim basis and in particular if it is in the person’s best interests to make the order without delay.

Section 1 sets out the principles which underpin the MCA 2005 which include:

Section 2(1) of the MCA 2005 provides that a person lacks capacity if,

Section 3(1) provides that a person is unable to make a decision for himself if he is unable

In A Local Authority v JB [2021] UKSC 52 the Supreme Court at [76]-[79] confirmed that an assessment of capacity under the MCA 2005 should first consider whether P has the functional ability to make the decision in question for himself (by reference to the factors identified in section 3(1) MCA 2005). If the court concludes that P is unable to make a decision for himself in relation to the matter, then the second question that the court is required to address under section 2(1) MCA 2005 is whether that inability is “because of” an impairment of, or a disturbance in the functioning of, the mind or brain. The second question looks to whether there is a clear causative nexus between P’s inability to make a decision for himself in relation to the matter and an impairment of, or a disturbance in the functioning of, P’s mind or brain. The two questions under section 2(1) MCA 2005 are to be approached in that sequence.

Section 4 of the MCA 2005 deals with ‘Best interests’:

The courts have emphasised in a variety of contexts that ‘best interests’ (or welfare) can be a very broad concept. For example:

In Aintree University Hospital NHS Trust v James [2013] UKSC 67, the Supreme Court considered the first case to come before it under the MCA 2005. Baroness Hale, giving the judgment of the court, stated at paragraph [22]:

At [44-45] it is said that the purpose of the best interests test is to consider matters from the patient's point of view.

Whilst the application of the law relating to giving, withholding or withdrawing medical treatment quires sensitivity and care, it is now clear and well-established. In Re A (A Child) 2016 EWCA 759, the Court of Appeal said:

The weight to be attributed to P’s wishes and feelings will differ depending on such matters as how frequently they are expressed, how consistent the views are, the complexity of the decision and how close to the borderline of capacity the person is (see [35] of RM, ITW v Z [2009] EWHC 2525 (COP) [2011] 1WLR 344). In Aintree (ibid),the Supreme Court made it clear that the court below had been wrong to focus on what “the reasonable patient” would decide, and emphasised that the patient’s own wishes and feeling must be properly considered: “the things which were important to him… should be taken into account because they are a component in making the choice which is right for him as an individual human being.”

Therefore, a host of matters must all go into the balance when the judge seeks to arrive at his objective assessment of whether this treatment is in this patient’s best interests. In particular I must consider AB’s views including any views he might have expressed when he had capacity.

In this case it is hoped that the orders I make will be put into effect by agreement and collaboration between the Trust/ICB and EF so that AB’s experience is as good as possible. If there is not cooperation in the implementation of my decision it is likely to have a distressing impact on AB and would indicate that EF is not acting in his best interests.

Pursuant to section 16(5) MCA 2005:

“the court may make such further orders or give such directions, and confer on a deputy such powers or impose on him such duties, as it thinks necessary or expedient for giving effect to, or otherwise in connection with, an order or appointment made by it under subsection (2)”

Thus, where P has a court appointed deputy the court can impose on that deputy a duty to give effect to an order it is making in P’s best interests. Failure of the deputy to act in accordance with that duty could sound both in the court concluding that the deputy ship should be revoked pursuant to section 16(8) MCA 2005, or I suppose in an extreme case, and where the court had placed a penal notice on the order, the deputy being in contempt of court.

In addition, or where there is no court appointed deputy as a separate mechanism, the Court of Protection under the MCA 2005 and or the High Court pursuant to its inherent jurisdiction, can make orders and grant injunctive relief to give operational effect to an order about an individual’s best interests that has been made by the court. In the present case, the issue was the court’s power to authorise entry to a property where AB is living in order to give effect to a decision that it is in AB’s best interests to be conveyed to hospital for the proposed medical assessments and, if necessary, a PEG tube change.

It is well-established that the Court of Protection has the power to grant an injunction pursuant to section16(5) MCA 2005 if there is a risk that a best interests decision made by the court under section16(2) MCA 2005 may be obstructed or frustrated by the behaviour or actions of any particular person. An injunction can be granted in terms which prohibit a person from behaving or acting in a certain way or to require them to do something to ensure the best interests decision is given effect to.

In Re G (Court of Protection: Injunction)[2022] EWCA Civ 1312, the Court of Appeal held that the power of Court of Protection to grant an injunction under section16(5) MCA 2005 is exercising the powers conferred on it by section 47(1) MCA 2005; namely the same powers, rights, privileges and authority as the High Court. As such, an injunction can only be granted when it is “just and convenient”to do so (this being the same statutory test applied in the High Court required by section 37(1) of the Senior Courts Act 1981). Lord Justice Baker held at [82] (emphasis added):

“...The Court of Protection does have power to grant injunctions under s.16(5) of the 2005 Act both in the case where a deputy has been appointed under s.16(2)(b) and in the case where the Court has made an order taking a decision for P under s.16(2)(a). In doing so, it is exercising the power conferred on it by s.47(1) and such an injunction can therefore only be granted when it is just and convenient to do so. This requirement is now to be understood in line with the majority judgment in Broad Idea as being satisfied where there is an interest which merits protection and a legal or equitable principle which justifies exercising the power to order the defendant to do or not do something. In the present case [where the injunction was granted in support of a best interests decision in relation to contact between P and family members], as is likely to be the case wherever an injunction is granted to prevent the Court's decision under s.16(2)(a) from being frustrated or undermined, those requirements are satisfied because [P’s] interest in the December order being given effect to is an interest that merits protection, and the principle that the Court may make ancillary orders to prevent its orders being frustrated is ample justification for the grant of injunctive relief if the facts merit it.”

When granting an injunction, the Court of Appeal further identified at [55] that the two requirements of “just and convenient” to be satisfied are that: (i) there is an interest which merits protection and; (ii) a legal or equitable principle which justifies exercising the power to order the defendant to do or not do something (Footnote: ¹).

In the case of East Lancashire Hospitals NHS Trust v GH [2021] EWCOP 18 where Mr Justice MacDonald was sitting (only) as a Judge of the Court of Protection, he concluded that by reason of the operation of GH’s acute agoraphobia and anxiety, that she lacked capacity to decide whether to agree to be admitted to hospital for obstetric treatment and a possible emergency caesarean section, and that it was in her best interests to be conveyed from her home to hospital by ambulance and for the medical and midwifery practitioners attending GH to carry out such treatment as may in their opinion be necessary for the management of GH’s pregnancy and delivery. The relief provided by the court included an order made pursuant to section 16(2) MCA 2005 that it was in GH’s best interests for staff employed by the applicant and/or any other NHS Trust responsible for GH’s clinical care or transportation to the hospital to use reasonable and proportionate measures. At the conclusion to the judgment, MacDonald J held that (emphasis added):

Whilst it is clear that the Court of Protection’s powers to make orders as to what acts would be in P’s best interests are very wide – albeit not unlimited as some decisions are excluded (for instance section 27(1)MCA 2005) the jurisdictional footing of their implementation is not as clearly delineated as in some other jurisdictions; see for instance section 50 Children Act 1989 and section 34 Family Law Act 1986.

In London Borough of Hackney v A [2024] EWCOP 33 (T3) DHCJ McKendrick (now Mr Justice McKendrick), sitting as a Judge of the Court of Protection and pursuant to the Inherent Jurisdiction of the High Court, considered an urgent application for a collection order and for an order against two telephone companies to provide for disclosure of information to assist in identifying the whereabouts of B, a 22 year old male, arising from welfare and safety concerns. He considered the jurisdictional basis for making such orders. (my emphasis added):

As McKendrick J there recognised the Inherent Jurisdiction of the High Court can only be used to plug a gap in a statutory scheme – it cannot be used in a manner which is inconsistent with, or worse, in conflict with a statutory scheme. I’m satisfied that where the court has determined that it is in P’s best interests for an act to be done, or a decision made, that the court has the jurisdiction pursuant to section16(5) MCA 2005 and in so far as is necessary to supplement this under the inherent jurisdiction as a superior court of record, to make such orders (in the form of prohibitory and mandatory injunctions) as are necessary, just and convenient and proportionate to ensure its best interests decisions on behalf of P can be enforced. Part 24 of CoPR 2017 identifies some particular forms of enforcement which broadly adopts a CPR approach to enforcement. In making such orders the court may authorise third parties to implement those best interests decisions whether that is staff of relevant applicants or others acting on their behalf or in appropriate cases the Tipstaff or police. Such authorisation would provide a lawful basis for acts which might otherwise be unlawful in a civil sense (such as trespass to property) or criminal (such as assault). I am not sure whether the Collection Order made by DHCJ McKendrick was ultimately implemented.

Section 2 and 3 MCA 2005 impose ‘diagnostic’ and ‘functional’ thresholds (respectively), which in this case is addressed by:

The ‘finding’ implicit in the deputyship order that AB lacks capacity in matters of personal welfare might be sufficient on its own to determine the issue of capacity although the order itself contains the caveat “if he is unable to make the decisions for himself when the decision needs to be made” . It is also of course right to note that section 20(1) MCA 2005 identifies that the appointment of a deputy does not give them power to make decisions where they know or have reasonable grounds for believing that P has capacity. However in a case where P’s lack of capacity arises from a physical source which is irreversible and permanent, a conclusion that they lack capacity in various domains at Date A involves a conclusion that they will lack capacity as at Date A + 5, 10, 15 years and so on – unless there is some change in their underlying medical condition and its effect on their decision making capacity. As the deputyship order does not contain District Judge Batten’s narrative explanation, I shall record in more detail than is strictly necessary the position regarding AB’s capacity.

Dr X says in his statement and in the COP3.

The Learning Disability team nurses carried out a visit to AB at home on 11 July 2005 and the ICB filed that along with a Capacity Assessment dealing with the issue of his conveyance to hospital.

Mr Sherlock, when attending AB’s home in an attempt to ascertain AB’s wishes and feelings regarding the application, asked a number of questions to illustrate AB’s ability to understand and communicate

EF has presented an inconsistent picture of AB’s capacity; in her discussions recently with Mr Sherlock and with the Learning Disability Nurses, she stated that AB could only make simple choices and did not understand more complex issues. This of course would be consistent with her having been appointed his Deputy empowered to make decisions in all domains of his care, support and medical treatment. However she has at times asserted, for instance:

The evidence establishes that AB is unable to take the decisions in question by reference to section 3(1) MCA 2005 and that he is unable to do because of an impairment or disturbance in the functioning of his mind or brain, that being the meningo-encephalocele which AB was born with, and which has had very serious neurological and cognitive functioning consequences for him ever since.

The evidence establishes that this impairment is a permanent impairment which impacts on all relevant domains of his functioning save in respect of some basic aspects of his care.

Thus, it is clear that AB lacks capacity in respect of the matters that are the subject of this application, but also clearly, far more broadly. That is implicit in the deputyship order and is self-evident from all the evidence before the court which can be traced back to AB’s birth. The Official Solicitor invites the Trust and the ICB to assess AB’s capacity to make decisions about: (i) his long-term care and support needs; (ii) his residence; and (iii) his contact with others, including EF, arguing that AB’s capacity in these areas of decision making will be relevant to longer-term decisions regarding his care at home and any associated deprivation of liberty. the Trust and the ICB do not object to providing such a further assessment, but I would not require any further assessment. The decision of District Judge Batten on the deputyship application implicitly includes a determination that AB lacks capacity in relation to his personal welfare and the totality of the evidence before me demonstrates that it is more likely than not that AB lacks capacity to make any of the more complex decisions relating to his personal welfare as recorded in the deputyship order by District Judge Batten.

As the substance of the best interests decisions are broadly agreed, my review of the evidence and the evaluation of AB’s best interests can be undertaken relatively summarily.

The orders sought in relation to the PEG are such that AB would be admitted for his PEG to be assessed, and assuming it required replacement that would be undertaken. Dr Y, Consultant Gastro-enterologist provided witness statements and gave evidence. In his witness second statement, he sets out a detailed chronology of the attempts the Trust had made to engage with EF over AB’s care, and the balance they had sought to maintain in promoting AB’s best interests whilst maintaining a cooperative relationship with EF. In relation to Gastroenterology, AB has been known to the Trust since 2016. It is not clear when the PEG was first inserted. Dr Y thought it had probably been sited when AB was a young child, but elsewhere there is reference to it having been put in place in about 2006 when AB would have been around 12 years of age. He thought it likely the PEG had been replaced on a number of occasions as AB had grown but as he did not have access to the GOSH notes he was unable to be definitive. The Trust team replaced the PEG in 2016 and the notes record that this was a straightforward procedure with AB undergoing general anaesthetic for deep sedation and recovering well from the replacement. Dr Y saw no reason to suppose that a replacement of the PEG now would be any more complex and there was nothing in AB’s notes or his underlying condition that made the procedure particularly risky. He said that the team at the Trust are accustomed to replacing PEG tubes for patients with more complex underlying conditions and with higher levels of risk than AB presents. He thought the operation should be fairly straightforward with a like-for-like replacement of the bumper PEG with another bumper PEG. He did not think it likely that a new site would be needed or that a balloon PEG would be appropriate although if the situation for whatever reason altered his view, they would be less preferable alternatives. The plan is that AB would be transported by ambulance from Hospital B and taken a short distance to the main site of the Trust where he would be admitted as a day case, sedated/anaesthetised, would undergo the procedure which should take no more than 15 minutes, would be in recovery and should be able to return to Hospital B, again by ambulance, later in the afternoon.

Dr Y said that a PEG could last for several years and that routine maintenance was undertaken by carers trained in the use of the PEG. Usually community-based nurses would undertake any further reviews or less routine maintenance of the PEG. He said the replacement was considered necessary because EF had contacted the Enteral Clinical Nurse Specialist team in December 2023 to state that HM’s PEG tube was leaking. The Gastroenterology team then planned to change the tube via an endoscopic procedure, but scheduled appointments were not attended across 2024; with EF declining to attend or saying she was not available. This continued into 2025, at which time, EF declined to engage as she had lodged a complaint against UCLH. When this complaint was rejected, she lodged a complaint with the Parliamentary and Health Service Ombudsman (“PHSO”). Another appointment for the PEG change which was booked for 10April 2025 was not attended.

By the time this application was issued, EF’s position had developed such that she had been saying that the Trust should not undertake the procedure because they had been found by the PHSO to have been medically negligent. In fact, the PHSO have confirmed simply that the complaint EF has made is awaiting assessment in the next few months by the general assessment unit.

Dr Y said that if the PEG had been leaking since December 2023 it was likely that by now it had further deteriorated and was broken in some way. Leakage could be of gastric contents which could be irritating to the skin or of food or medicine supplied via the PEG. Prolonged exposure to leaking fluids could cause irritation and ultimately potentially infection of the skin or the underlying muscle, and at worst sepsis. Another risk is that if the PEG breaks so that food and medication cannot be delivered by it, that will often lead to an emergency admission which is likely to be more harmful to the patient and more problematic in terms of timing of any operation.

A detailed Care Plan has been developed which covers the PEG and Neurology aspects of the proposed admission.

Dr X, a consultant neurologist at the Trust dealt with the neurological aspects of AB’s position. He is a specialist in epilepsy and additional learning disabilities. He explained that AB’s underlying condition had resulted in only partial formation of the brain and that this is linked to his epilepsy. Dr X has been involved in AB’s care since 2014. AB has not been seen face to face by the neurology team since June 2017 There have been telephone reviews with EF in 2018, January 2022, 18 May 2022, 14 December 2002, 5 January 2023, 17 May 2023 and 15 May 2024. EF had been invited to bring AB to face to face appointments in 2018, 2019, 2021 and 2022. In 2022, AB’s GP contacted the Trust asking them to review AB as EF had reported he was suffering from ongoing seizures and was administering Buccal Midazolam quite regularly. Telephone reviews in 2022 led to increases in AB’s prescription of sodium valproate but he was not brought to an appointment in May 2022. Later that year EF participated in a telephone review and in May 2023 she attended a telephone review with Dr X. In May 2024 the Trust recommended a detailed neurological investigation but EF said AB would not tolerate an EEG or MRI. The face-to-face appointment was booked for May 2025 with Dr X but EF and AB did not attend. A slot was booked for video telemetry EEG in the week of 2 June 2025, but AB was not brought to Hospital B.

There have been long-standing concerns over the extent of AB’s seizures and whether they are epileptic in origin, behavioural or sleep related, and the connected issue which had prompted the application for AB to be admitted for assessment was the long-standing concern in relation to the use which was being made of Buccal Midazolam. This is an emergency medication which is introduced into the mouth during a seizure in order to stop the seizure. A prolonged convulsive seizure risks damage to the brain as it interrupts the oxygen supply. In AB’s case the seizures are not typical convulsive seizures but are smaller seizures which are non-convulsive, but which can last hours and which affect the quality-of-life, including preventing an individual swallowing. It is considered to be a very strong sedative and is very rapidly absorbed through the tissues in the mouth. The Trust team are concerned that the Buccal Midazolam is being used in circumstances where in fact there is no seizure. There are significant risks associated with the use of the drug because there is a risk of respiratory depression and the patient stopping breathing and this increases with higher doses. Conversely if the drug is overused the patient develops a tolerance to it and if it is then used when there is a true seizure it is ineffective. It is not clear to the neurology team how often the drug is being used although the recent evidence from the GP is that the repeat prescription included eight doses of the drug. This led to a concern that if this was occurring every month, that it would amount to overuse. The GP records showed that the drug had been used to address clusters of seizures over two or three days. If the drug was being used for seizures frequently and in clusters, Dr X explained that the better medical approach would be to review the standard drug prescription that was in place to control AB’s epilepsy in order to provide drugs and dosages which prevented such seizures occurring in the first place.

Previously the neurology team had invited EF to submit videos of episodes she considered to seizures, and she had done so in 2022, 2023 and 2024. The neurology team had not considered they showed seizure activity which required the use of emergency medication such as Buccal Midazolam.

The purpose of the review which was sought in 2024 and which was due to take place in June 2025, was to undertake video-telemetry EEG which combines the use of continuous EEG monitoring over up to 5 days with video filming of AB. EF or one of his carers would be present throughout so that they could identify when AB was experiencing seizures and this could then be cross-referenced to the EEG records and observed on the video film in order to determine whether it was likely to be an epilepsy-related seizure, a behavioural issue or a sleep-related issue. The nurses on duty would administer Buccal Midazolam if the evidence suggested that it was appropriate to do so. The multidisciplinary team would ultimately review all of the evidence from the admission to determine whether what was observed were seizures or something else. Alongside this detailed neurology review, the team would undertake toxicology tests to confirm what drugs AB had been given, and a review would be undertaken.

Dr X said that people with learning disabilities often do not tolerate an EEG very well as it involves the sticking of sensors to the scalp and people would often remove them. He thought it possible that AB would not tolerate them early in his admission, but that as he became accustomed to the environment over the five-day admission and further efforts to help him to tolerate the sensors being put in place being made, that it was at least possible that he would tolerate them for short periods of time. He said that even short periods of monitoring would be of some use. Although the video component of the testing could be put in place at home by the installation of a camera in AB’s bedroom, the EEG component could not be replicated unless they were confident that the patient would not remove the EEG sensors and in AB’s case that was not indicated. Dr X confirmed that the video telemetry EEG admission was a scarce resource and that it was being offered for a second time because they thought it important to attempt to review AB to ensure his medical care and drug prescriptions were as well matched to his needs as possible. He said he doubted that another slot would be offered unless there had been a significant change in AB’s domestic situation where they could guarantee that he would be brought to the hospital.

The Trust’s efforts to get AB to be brought into hospital for a PEG review and for a neurology review eventually led to an apparent breakdown in the relationship between EF and the two teams. Furthermore, the ICB’s attempts to review AB’s care needs, including by way of a CHC review, had not met with any greater success. The current care package assessed in 2017, determined that AB required 210 hours of care each week. The ICB had funded this by paying to EF£3561 per week which was, by 2023, intended to fund five personal assistants. Attempts to agree a care plan with EF and her solicitors had not reached fruition although it had been agreed that EF could receive some of the direct payments herself as the project coordinator and senior PA. There were concerns that although the plan required five PAs that these were not being used and that those who were providing the care may be working excessive hours which could compromise AB’s care. A review is required each year and the ICB have been unable to undertake this since 2023 as EF has refused to allow the ICB access to her and AB’s home. The chronology contained in the witness statement prepared by the CHC adult LD and autism clinical manager on behalf of the ICBsets out the history of attempts made over the course of 2024 and 2025 including through solicitors. Over 2024 and 2025 the ICB attempts were characterised as bullying and in due course harassment by EF who made complaints to the police. The ICB propose to undertake an updated assessment of AB’s care needs whilst he is an in-patient at Hospital B.

As part of the preparation for this hearing, I made a direction that EF permit the attendance of two learning disability nurses on behalf of the ICB at AB’s home to assess him and his likely tolerance of an admission to hospital. The instruction of two learning disability nurses was undertaken after EF refused to permit ICB staff undertake the assessment. Their attendance was facilitated by EF who engaged with them on the issues relating to AB’s potential stay in hospital, his capacity and any reasonable adjustments that might be necessary. They were able to ascertain that AB could indicate simple daily choices in relation to food and activities and they observed his ability to communicate his decision by a combination of verbal and physical responses. When he was asked by EF if he wanted to go to hospital to have his PEG changed, he smiled, lifted his arms and made a sound which appeared to signify yes. When the nurses also asked him, he appeared to signify his agreement. He also appeared to signify agreement to going to hospital for a test on his head, but they were unsure how much he understood. The nurses thought from their overall interactions with him that he did not have capacity to make a decision as to his conveyance to hospital and EF agreed that he would be unable to weigh up the pros and cons and to communicate those effectively. The discussion around reasonable adjustments included use of taxis for transport, that he had previously tolerated overnight admissions, that he would benefit from having somebody that knew him well with him at all times either EF or a carer, that if possible, a side room should be available to EF and the carer. EF said that AB does not like anything on his head and thought he would not tolerate the electrodes on his head. When the nurses sought to enquire about taking his blood pressure or blood oxygen AB indicated he did not consent by pushing their hands away. Overall, they considered that he would tolerate a hospital admission with the implementation of reasonable adjustments and that a hospital passport should be produced and used.

EF has filed three witness statements in these proceedings. She did not attend the hearing in person or remotely but did participate in the visit by the two learning disability nurses and the visit by Mr Sherlock. She also participated in the roundtable meeting that took place on 14 July 2025. There is a significant contrast between the approach taken in her statements and in her participation at the directions hearings and in the meetings at home and during the RTM.

Her statements focus more on ‘process’ issues than on welfare, including on her rights as the court appointed deputy for AB and her obligations to act in his welfare and the inappropriateness of the ICB being involved in decisions where she says she has provided evidence of harassment and medical negligence by them. She says it is a conflict of interest for them to visit her and seek orders and that the application is an abuse of process. She explained that she had not permitted the ICB staff to assess AB on 7 July 20025 because of the history of harassment. She did produce some photographs of AB which seemed to correlate well with the evidence from the learning disability nurses which showed AB in his room, apparently well-cared for and comfortable. This would also accord with the OPG General Visitor report from February 2025. Nothing in her statements, however, addressed the issues of the assessments in hospital and the possible replacement of the PEG, or his admission to the neurology department for an assessment of his seizures. Inferentially the statements appear to suggest that his care needs are adequately addressed by EF herself and by carers instructed privately by her. As EF did not attend the hearing it was not possible to explore further with her the substance of the applications which were made. However her interactions with the learning disability nurses, with Mr Sherlock, and her participation at the roundtable meeting, provide some greater insight into her views and her assessment of AB’s welfare.

At the roundtable meeting, the position of EF was that:

Mr Sherlock, the solicitor with conduct of his case within the office of the Official Solicitor, visited AB at home on 15 July 2025. His visit was facilitated by EF and by one of AB’s carers. Mr Sherlock’s experience was broadly consistent with that of the learning disability nurses. AB’s home environment appeared suitable, and he was comfortable within it, and he appeared to be well cared for. AB’s ability to understand and communicate with Mr Sherlock was again consistent with that observed by the learning disability nurses and supported the conclusion that he was able to understand and communicate simple choices, about for instance, food or outings, or what his favourite wheelchair cover colour was, but he did not appear to understand a more complex question about his support for Arsenal Football Club or some information about the court proceedings. EF said she did not think he was able to weigh up information. AB appeared to communicate his agreement to going to hospital to have his PEG renewed, and EF said that he was very distressed by the fact that his PEG is leaking. He appeared to indicate a dislike of having something placed on his head. Further exploration of AB’s wishes included the use of an orange and a green buzzer and AB seemed to indicate again that he wanted a new PEG tube. Discussion with EF about AB’s seizures disclosed that she considered that they were completely unpredictable but could come in clusters.

The evidence as to AB’s best interests from the medical perspective is therefore all one way and supports the conclusion that it is in his medical best interests to be conveyed to Hospital B to undergo the assessments and treatment which are contemplated in the Care Plan. AB is not likely to regain capacity and cannot be supported to make a decision on these issues, although he has been enabled to participate.

Considering other aspects of all of the circumstances for the ‘best interests’ decision-making criteria pursuant to section 4 MCA 2005 includes the following.

AB’s wishes: When Mr Sherlock visited AB he recorded the following in respect of his wishes

EF’s views as a person involved in AB’s care and as his deputy have been recorded throughout this judgment. I remain not entirely clear that she agrees to AB being treated at the Trust given the strength of her views about the Trust and the ICB previously, but the most recent evidence from the visits by the learning disability nurses, Mr Sherlock, and the roundtable meeting, perhaps represents a move forward such that she is now in agreement to the Trust and the ICB undertaking the assessments and treatments contemplated. It is not clear what AB’s other carers views are, although I would infer from the notes of the meetings where they have been present that they are probably supportive. Self-evidently the views of the Trust and the ICB, as being involved in AB’s care, are fully supportive of the implementation of the Care Plan.

It is therefore clear that it is in AB’s overall best interests to be conveyed to hospital and to undergo the assessments and treatments contemplated. With the reasonable adjustments contemplated and incorporated within the care plan this ought to represent an opportunity to update and implement a medical and care treatment plan which reflects his current needs. It appears likely that if it is implemented in a cooperative way that AB will not only benefit in terms of his medical treatment and care needs but that it will have only a minimal negative impact on him if that. His current indicative opposition to the placement of electrodes for the EEG may endure but with sensitive care from the nursing and the medical team there must be a real chance that at least some useful EEG data will be obtained as it is likely that AB’s disinclination to have electrodes placed on his head can be overcome.

Given the risks to AB arising both from a malfunctioning PEG and from a drugs regime which is currently not attuned to his actual neurological needs, whilst his admission is not urgent, it is absolutely necessary. An updated assessment of his care needs is also necessary. It being necessary I also therefore conclude that it is proportionate and just to make such orders as will ensure that his admission takes place even if EF ultimately proves uncooperative.

In the first instance I hope that she would cooperate irrespective of any duty imposed on her by me. However, given the issues that have been experienced in her engagement in these proceedings and with the Trust and the ICB over previous years I consider it appropriate to impose a duty on EF as a B’s deputy pursuant to section 16 (5) MCA 2005.

Inevitably obstruction in the implementation of the order is likely to have a detrimental impact on AB in that it will expose him to potential conflict and thus distress. However it is necessary for him to be assessed and treated and the medium to long term medical advantages to him of that outweighs any short-term distress that might accompany an enforced removal. I have no doubt that if he has to be removed that the Trust/ICB staff in cooperation with transport staff and police if necessary will manage the situation as sensitively as possible so as to minimise any distress but I therefore also consider it necessary proportionate and just to make orders pursuant to s.16(5) MCA 2005 and the inherent jurisdiction of the High Court which direct and authorise the applicant and third parties to implement this decision, and which includes an ability for the applicant and third parties to enter EF’s property to ensure that professionals gain access to AB in order to convey him to hospital, in accordance with the orders made by this court.

As I have outlined above it is clear in my judgment that the medical and other evidence establishes that AB meets the diagnostic and functional criteria to conclude that he lacks capacity to take the decision in relation to his removal to hospital and the assessments and treatments contemplated in the Care Plan. The evidence also establishes a wider and permanent lack of capacity in relation to the more complex decisions which relate to his personal welfare as delineated in the deputyship order.

The evidence establishes it is in AB’s medical and wider best interests as well.

It is regrettable that I am in a position of having to impose duties on EF as AB’s deputy as this situation so obviously demonstrates where AB’s best interests lie. It is more regrettable that EF’s approach has led the applicants to seek injunctive orders which will enable the decision to be put into effect if she does not co-operate. Those orders – which are rare and draconian – should be wholly unnecessary were EF to have demonstrated a more objective approach. The pictures of AB show a man being well cared for and apparently content in his home and the disconnect between EF’s personal commitment to AB and the care she delivers, and her hostility to the Trust and the ICB is profound, but ultimately it is this court which has to determine what is in AB’s best interests and to determine how that should be implemented and to ensure that there is no further delay in AB’s admission and treatment – and in particular that the scarce resource of the video-telemetry EEG is not wasted. This requires the court to put in place a stepped series of orders to allow the applicants to start from the least intrusive, but with the back-stop of mandatory and enforceable orders which will ensure AB’s best interests are actioned.

That is my judgment.