‘The point is this – she is scared and vulnerable’: Judge about Laura Wareham

By Claire Martin, 17 March 2024 

There has been a series of hearings concerning Laura Wareham.  I observed a previous hearing in June 2023, and blogged about it here. At that hearing, the Health Board was seeking a 12-week cessation of all contact between Laura and her parents.  

In this blog, I have chosen to write about relationships between patients, families and systems of care.  What I witnessed in the hearings that I observed I found very alarming.  What I have written is based on what I have learned about the relationships between Laura Wareham and the teams who look after her (as well as her parents who are central to her life). It Is also based on what I have learned in my own professional role as a psychologist about relationships between care teams and those they are caring for.  

I observed  most of the final hearing concerning Laura’s capacity  on 19th and 21st February 2024. I was sad to miss Laura speaking for herself when she addressed the court on 20th February and I understand that her concerns were clearly and articulately expressed, leading at least one observer to believe that she clearly demonstrated capacity in all domains – a view that she subsequently  revised when she considered the law underpinning capacity assessments (see “An articulate and intelligent P is found to lack capacity: Laura Wareham in court”).

In his judgment at the end of the hearing, Deputy High Court Judge McKendrick KC found that Laura lacks litigation capacity, capacity to decide her care and support, where she lives and with whom she has contact. There is to be a further assessment of capacity to decide on use of social media. 

I have not met Laura or seen the capacity assessments and cannot know whether they are correct.  Laura and her parents oppose these conclusions, arguing that Laura has capacity for all these decisions. Dr Camden-Smith, expert witness psychiatrist, was adamant in her conclusions regarding lack of capacity for Laura on all these matters, citing Laura’s autism as the “impairment of the mind or brain” underpinning the current lack of capacity. She also, however, said that Laura might regain capacity for such decisions in future. The expert chosen by the parents, Dr Eccles, was also – after cross-examination – unable to state that Laura had capacity to make any of the relevant decisions for herself.

Whether the declarations on capacity are correct or not (as public observers we do not have access to all court documents and evidence, so are not in a position of full knowledge about any case), the restrictions and removal of agency for Laura are extensive. 

Because there’s a determination that she lacks litigation capacity, she cannot instruct a legal team herself – instead being represented by the Official Solicitor, who is instructed by a solicitor who Laura  has apparently fallen out with and won’t communicate with. Key lines of communication with Laura are, seemingly, beset with difficulty: the health care system and legal representatives have found themselves unable successfully to navigate relationships with Laura and her family. 

Laura remains in a care setting that she does not like and has no choice about and objected to moving to, and she opposes any ongoing involvement in her care from the current Health Board. She is restricted in terms of her contact with her parents, with whom she lived for 33 years before being admitted into hospital in 2021. She is judged to lack capacity in relation to most aspects of health care decisions (except I believe for decisions about catheterisation).

In relation to her medical needs in particular, Laura is said to have developed ‘erroneous beliefs’, shared and ‘reinforced’ by her parents, which have led to harm (in the form of unnecessary treatments). Dr Camden-Smith’s evidence (quoted from the Position Statement for the Health Board) stated: “The extraordinary and harmful care previously provided to Ms Wareham cannot be underestimated; I cannot comprehend how a situation arose in which Ms Wareham was receiving the medical interventions that she was without any clear medical evidence of need or benefit; however it did arise and the risk remains that this pattern will be repeated, particularly if the Warehams move to a new area.”

I don’t know how Laura came to receive such ‘extraordinary and harmful care’ from previous medical teams. I do know that patients and their families  cannot compel medical teams to offer treatment that they do not think is clinically appropriate, and I am interested in where the responsibility is located, in relation to Laura having received ‘medical interventions … without … need or benefit’. I found the statement above curious – it seems to be suggesting that Laura and her parents are solely responsible for the ‘harmful’ medical treatment that Laura has received. As if the treating team(s) are not able to make autonomous clinical decisions. One could argue that another potential source (albeit not current) reinforcing beliefs about medical needs (whatever those may be) could be that previous medical practitioners have given treatment for conditions that are now rebranded under the heading of ‘erroneous beliefs’. Perhaps it is not easy for Laura to understand why she is expected to trust some medical practitioners (her current team) and not others (her previous team(s)).

In McKendrick J’s judgment of 5th March 2024, he states (at §20): “Whilst challenged in these proceedings, it is important to record the views of treating clinicians is as follows (taken from the October 2023 evidence):  “Dr and Mrs Wareham’s …[…] behaviours are potentially causing Laura to be confused or very anxious about her state of health to the extent that she appears to have developed a false self-view of being sick and this is now driving her own erroneous beliefs of her own sickness along with the role of unhelpful own peer groups on social media which can potentially encourage each other to remain ill.” […] There is a complete agreement on the continuing need for de-medicalization including reducing /stopping unnecessary medication (which has already been done with full oversight of the MDT) and offering graded physical rehabilitation.””

So the need for de-medicalization is a ‘fact’, established in a previous judgment (with which Laura’s parents strongly disagree). 

It was clear from the hearings I observed that relationships between Laura and her parents on the one hand, and clinical teams and the Official Solicitor on the other, are strained and fractious. Fractured relationships can lead to attrition and blame. Of course, this can be both ways – though power is not on a level playing field when it comes to capacity assessment, health and social care systems. Listening to this statement (above, by Dr Camden-Smith) read out in court alerted me to listen for other suggestions that errors and blame might solely be located in Laura and/or her parents, rather than anywhere else within the system of care, or in the relationships between them all. 

Where is responsibility located?

Rigid and Agitated

Dr Camden-Smith referred, in her oral evidence to the court, to Laura being ‘highly focused’ on matters that others do not consider relevant to the court’s decision. Dr Camden-Smith said:

“The primary difficulty is [that]  Laura focuses on details and matters that are not germane to the matters at hand … she’s highly focused on small areas such as the Human Rights Act, genocide and the Montreal convention …. She remains as rigid and agitated by that as she has been all along.” 

In cross-examination from Abid Mahmood (counsel acting for Laura’s parents) Dr Camden-Smith confirmed “I recognise her human rights might be being impinged, but that’s not the remit of this court. We are dealing solely with capacity …  human rights [might be] breached, but they are qualified rights”. 

It feels as if Laura’s concern with her human rights is being seen as a ‘small area’ and she is cast as ‘rigid’ for determinedly referring to these concerns, even though there is confirmation that her Human Rights are being breached. I understand that the expert witness is not saying that Laura should be less ‘rigid’ and is stating a fact as she has assessed it. However, I wonder why Laura repeatedly brings these issues up? What is happening that she persists in the face of opposition to consider them? 

Abid Mahmood later addressed this issue in his submissions to the court: 

“This is a factually complicated case. May I touch on contact briefly. The context is that Laura was living at home for 33 years with her parents, now the situation is extremely limited for options for face-to-face contact and remote [contact] 2-3 times a week. The undisputed evidence is it breaks down due to tech issues. […] Laura sees her parents before extensively, because she lives with them. Then very very difficult limited contact. It is frustrating for Laura and her parents. She can’t access social media, she can’t engage with the staff. So that’s the context and then ‘well she keeps going on about human rights’.  […]. Laura’s ‘fixation’ in respect of Human Rights. Dr Camden-Smith was not providing her expert evidence in respect of this – Laura was correct when she has said that her Article 8 right to family life and Article 3 right to live free from degrading treatment and Article 5 right to liberty are correct. This is a vivid example where [the] court can see that Laura is seeking to inform and educate the court – and others – saying to care workers ‘I have Article 3 rights’ is not going to be listened to”. [Counsel’s emphasis] 

Judge: I am empathetic to that condition… Dr Camden-Smith said that the Human Rights Act doesn’t fall within this jurisdiction, she’s probably wrong in law […]” 

My understanding of these exchanges is that Dr Camden-Smith was assessing and reporting on capacity for specific decisions and did not think that Laura’s Human Rights were pertinent to her task. Laura, on the other hand, prioritises these concerns. That fact, I think, is seen as Laura’s problem by the Health Board and expert witness Dr Camden-Smith. 

Erroneous Beliefs and Alienating Staff

McKendrick J was asked to consider restricting contact with people said to reinforce Laura’s ‘erroneous beliefs’ about her medical needs, with the aim of facilitating her cooperation with rehabilitation and ‘demedicalisation’. All three counsel addressed this issue: who is said to be harmful and how extensive should be the restrictions. 

Eloise Power (Health Board): I am being instructed to put forward that declarations should be made about contact with others, not merely the parents. […] One possibility is to make declarations to restrict contact with the parents and others who reinforce the erroneous beliefs.

The Health Board was asking the judge to declare that the care team could restrict Laura’s contact with anyone (including internet groups ‘that may reinforce the damaging thinking’) that they deemed to be ‘reinforcing erroneous beliefs’. I was heartened to hear the following: 

Judge: Who is policing this idea of others who are reinforcing these erroneous beliefs? Imagine Aunty S arriving and staff being told ‘Aunty S reinforces erroneous beliefs.’ I might be persuaded that an application is needed to be made. 

The judge here was saying ‘No’ to the blanket authorisation, seemingly requested by the Health Board, to restrict contact with people other than Laura’s parents. He had earlier also said “I am not going to be signing a blank cheque” in relation to restricting Laura contacting bodies such as the Food Standards Agency, or the Health Service Ombudsman or even 999. 

Ian Brownhill, for the Official Solicitor, said: “The OS would oppose a general and broad declaration that Laura lacks capacity to decide contact with others. [There is] not the evidence. It seems the Health Board already has potential categories in mind. They should say [what these are] and … [they] should be tested. […] Turning finally to the broader issue of Laura’s ability to contact external agencies – I have two submissions – firstly we would submit that there’s a difference between Laura contacting a super-specialist in a particular area, to contacting 999 or the Food Standards Agency or the ombudsman. [There is] no authority, as far as I am aware, where the court has been asked to make declarations regarding the Food Standards Agency, the Human Rights Commission etc. There have been previous attempts to encourage the court to make declarations that someone does not have capacity to contact 999 – but no reported judgments. The OS has felt concern that someone should be prevented from calling 999 and where P has had a wish to contact people who have a statutory responsibility for safeguarding, for example the ombudsman, FSA etc. [The OS has] significant discomfort if the court is being asked about that”. [counsel’s emphasis]

Judge: “My preliminary view is to agree with this counsel”. 

Eloise Power said that the Health Board had not sought further restriction on contact with others or on social media (this seemed to be contrary to the previous statement from Ms Power that ‘I am being instructed to put forward that declarations should be made about contact with others, not merely the parents’) – however, there was clear concern on the part of the Health Board about these issues and a suggestion from Eloise Power that there would be a Health Board ‘assessment and best interests decision’ in relation to these concerns. 

Rather unusually for a barrister (they are often poker-faced) Ian Brownhill had what he described as a “visceral reaction” to this as Ms Power was speaking  (a sharp intake of breath) and raised a concern about this: “My submission regarding Ms Power …. the Health Board ought not to be holding Best Interests meetings when My Lord is making Best Interests decisions.”

Judge: Laura is a P in the Court of Protection, so if Best Interests decisions are being made they ought to be made by a judge. 

Judge McKendrick made it clear to the Health Board that ‘between now and the next hearing’: “Laura needs something to do. […] if she wants to while away the hours on Pinterest, that can be subject to light touch supervision”. 

Could it be that, in the context of fractured relationships, an over-reach of power and control is sought in the name of ‘protection’? Munby J famously said, “What good is making someone safer if it merely makes them miserable?”. The longer quote from that judgment suggests that ‘Physical health and safety can sometimes be bought at too high a price in happiness and emotional welfare’. As far as I know, the ‘harm’ that Laura’s parents are said to pose to her is from seeking, widely and repeatedly,  specialist treatment for Laura, which is said (later, by different treating teams) to have led to treatment that has been deemed ‘harmful’ and of ‘no benefit’. There isn’t evidence or established fact that Laura’s parents are aiming to harm her health, but that they have different views to current treating clinicians about her medical diagnoses and needs. And that those differing beliefs influence Laura’s thinking about her needs.

The judgment states that: “Dr Camden-Smith carefully considers whether Laura’s presentation meets the diagnosis of Factitious Disorder Imposed On Another (ICD-11 6D51) but does not find “clear and unequivocal” evidence to support this although she is of the opinion that the parents “contribute materially and substantially to Ms Wareham’s illness behaviour and help-seeking behaviour…..[and] often obsessively seek out medical professionals who reinforce their own (erroneous) illness beliefs.” 

I don’t think the potential impact of losing their other daughter, quite recently – a daughter who also had Ehlos Danlos (though she died from cancer) –  can be underestimated. As parents, they must be terrified of losing Laura too. Often, people’s behaviour is cast as extreme. Another perspective could be that – faced with life and death situations – people’s behaviour can be normal in abnormal circumstances. 

A judgment in 2021 by Mr Justice Hayden is relevant here. In this judgment, Hayden J reflects on the ‘regular’ situations in the Family Court and the Court of Protection, where parents have  “become drawn into high octane conflict with the raft of professionals who seek to support their child’s care”. He later refers to parents of adult children similarly (“I would add that a similar dynamic and frequently for the same reasons identified here, arises in the Court of Protection when dealing with incapacitated adults.”). Hayden J commented on the expert witness (Dr Hellin) evidence in that case,  in relation to the parents’ response to their child’s conditions and care (‘M’ in the quote is the mother):

“As Dr Hellin points out in clear and unambiguous terms, this anxiety is “rational” and based in the “cumulative reality of life-threatening medical events in [W’s] life and the uncertainty of his condition and prognosis”. M’s response to the very challenging circumstances she faces are said to be “normal” and Dr Hellin would expect “a similar response in even the most psychologically robust person”.

The judgment in that case stepped back and took a systemic view in order to understand the ‘dynamic processes’ that were at play: “Already it is clear to me, before any work is undertaken, that this exposition of the dynamic has helped both the care workers and the parents better to understand the challenges that each face. […] Perspectives had become polarised and difficult to placate. Dr Hellin’s proposals are predicated on promoting mutual understanding and diminishing mutual blame.”

I do wonder whether an intervention of this kind is needed for the whole system of care around Laura. It is clear that relationships between Laura and her parents, and those looking after her on a day-to-day basis, are very polarised indeed. The Health Board has reached a position where it seems to want to police almost every interaction that Laura has, whether in-person, online or via email or letter. The Official Solicitor expressed ‘significant discomfort’ at that suggestion. 

On the one hand, the health and care system seems to feel attacked and beleaguered in their dealings with Laura and her parents, to the extent that previous health teams  have (according to Dr Camden-Smith) acceded to providing ‘harmful’ medical treatments. On the other hand, Laura and her parents are claiming that Laura’s health and care needs are not appropriately met and that her human rights are being breached. One word in Dr Camden-Smith’s evidence (from the Health Board Position Statement, kindly provided by Eloise Power) jumped out at me: 

“She fails to realise that her rigid insistence on her chosen issues alienates those caring for her and makes it impossible for her solicitor to elicit any coherent instructions regarding the matter at hand. Ms Wareham remains convinced that her viewpoint and interpretation of the law is the only correct one and that those who aren’t able to convince her otherwise are wrong.” [my emphasis]

Alienation

The statement above about Laura’s “rigid insistence on her chosen issues” is, basically, saying that because Laura won’t stop talking about things that her carers don’t want to hear about, she ‘alienates’ them. Locus of responsibility, I would suggest, is placed in Laura here. Looked at another way, perhaps Laura’s care team won’t stop talking about things that Laura doesn’t want to hear about, and they ‘alienate’ her! Or perhaps, this is a shared dynamic that needs stepping back from, “better to understand the challenges that each face” (Hayden J. above). 

Learning about Laura’s situation and the responses of the health system around her has caused me to reflect on how systems of care can, often unwittingly, develop unhealthy and even harmful relationships with those they are there to care for. Hayden J’s judgment above is referring to this dynamic. Anyone on the receiving end of care is (by the very nature of the ‘caring-to-cared for’ relationship) in a less powerful position than those in the ‘caring’ role (although that might not always feel the case to those in the system). Iatrogenic harm is defined as “any injury or illness that occurs as a result of medical care”.  This can be thought of more widely than ‘medical’ care and physical illness in their narrowest sense. In physical and mental health care this has been written about extensively [for example here, here and here; and in relation to specific types of Ehlers-Danlos syndrome here and here]. 

There is a concept in mental health care called Malignant Alienation., although it doesn’t solely apply to mental health. It has been used broadly to understand organisational dynamics of care.

It is hard for professionals working with patients and their relatives and supporters when there is dispute and acrimony. It is (perhaps) harder for patients and relatives, in the less powerful ‘cared-for’ role, to work with professionals when there is dispute and acrimony. It can be common for both sides to blame each other. Whatever the rights and wrongs and who did what when, Laura is a person who is not, actually, in a powerful position. She has significant care needs and she is assessed (by the expert witnesses) as having “a likely significant mismatch between her verbal proficiency and her processing skills”. She has been prevented from returning to her home with her parents, partly due to the harm they are said to pose by fuelling her ‘erroneous beliefs’ but also because (if this were an option the court would consider) the Local Authority says this is not an option due to the excessive cost of a home-based care package. 

These are difficult circumstances and I have no doubt that carers find it difficult looking after Laura. I heard though, at times, these relational problems being firmly located in Laura (and her parents). I give two examples below, one from the expert witness Dr Camden-Smith and one from Eloise Power, counsel for the Health Board. 

Dr Camden-Smith (from Position Statement): “… it remains my opinion that she is unable to consider all the information holistically and in the round, choosing what to prioritise and how to ‘pick her battles. She remains convinced of the superiority of her understanding of the law and frustrated at the perceived refusal of her solicitor to advance the arguments she would like to have advanced, despite these often not being relevant to the current proceedings. Attempts to discuss matters with her are generally overwhelmed by her detailed complaints about how her rights are being breached and the ways in which she is subject to torture and genocide. She may well have claims under the Equality Act and Human Rights Act, however this is not the forum to address those claims. Ms Wareham is incapable of holding more than one option in her mind so as to be able to compare them and project forwards hypothetically.”

The expert witness report from Dr Camden-Smith states “This is due to her autism, exacerbated by her pathological beliefs about her illness“.

Surely, it would be even more incumbent on services, then, to find ways of improving communication and acknowledging distress. I am sure that the services around Laura have tried their best to do this: however, whatever care plans, communication and strategies have been put in place, they don’t seem to have worked. 

Eloise Power: “In relation to matters of concern fed to your Lordship by Laura herself….”. The phrase ‘fed to’ – in place of a more neutral rendition such as “reported to” or “raised with”  is interesting. It implies doubt on the legitimacy of  Laura’s concerns (which were about not having access to a Bible, to her iPad, to personal care from female carers, not having her bed changed often enough, being prevented from contacting the Office for the Public Guardian and an issue with lighting and noise in the care setting). It has resonances with the phrase “fed me a line” (which Merriam- Webster defines  as: to tell (someone) a story or an explanation that is not true).  It’s likely the Health Board’s experience of these issues is different to Laura’s, but I wonder whether that phrase “fed to” would be used, for example, in relation to an expert witness’s evidence. 

Eloise Power made it clear that the Health Board’s position is very different to that of Laura: 

Judge: She is extremely close to her parents. I have already authorised a relaxation of these to include face-to-face with her parents – I am not aware of particular issues  …… 

Eloise Power: Alas it goes beyond that My Lord.

I found it interesting that the judge is relaxing the restrictions on contact with Laura’s parents – yet the Health Board continues to paint a different relational picture. It did make me wonder whether, organisationally, the Health Board is also finding itself unable to be flexible in how it views and relates to Laura and her parents. If there is evidence that restrictions should not be relaxed, I assume the Health Board would have submitted it. 

Groves (1978) talks about the following: 

There is a long tradition, in psychoanalytic and psychological thinking, of exploring our own feelings and responses towards those we care for. Analysts call it ‘countertransference’. This can be uncomfortable and difficult for clinicians and carers, and so it can feel much more attractive to avoid this area and locate any difficulties in patients. It can be much more bearable and acceptable, in cultures of care, to ‘project’ our bad feelings into the ‘difficult’ (less powerful) patient. However, that is much more likely to lead to attrition and entrenched positions. Is this a possibility in Laura’s case?

In a book called Using Time Not Doing Time, Hamilton suggested a model to describe ‘a continuum of professional behaviour’ (this model was developed in forensic settings and has been used much more widely across health and social care):  

The ‘controller’ end of the seesaw is often described as the ‘security guard’, a role that is concerned with rules and tasks and where, if a patient challenges those boundaries, the immediate response is often to tighten the boundaries. The patient on the receiving end often feels controlled, judged, emotionally neglected and vulnerable. And they then can become (in the eyes of the professionals) ‘challenging’. But it is a reciprocal relationship – both parties contribute and (usually) one party has a lot more power and potential support to step back and find another way. 

At the end of the hearing,  communicating his judgment, McKendrick J said:  “I told Laura the decision – my observation was that she accepted the decision. It seems to me clear from my judicial visit that Laura remains, notwithstanding the hard work that has taken place – a vulnerable and scared woman. She told me ‘I am scared’ … ‘I really need a legal team with which I feel safe and secure’. She does not have access to the amount and type of food she wants, her bed is not changed with enough frequency, she can’t speak to her aunt, she can’t contact external safeguarding agencies to help her feel safe. […] She had a download of the Bible but that has been deleted. She wants […] to have food delivered and wants to use Pinterest and hasn’t [been allowed to]. I would like the parties to address those issues Laura has raised.  [They are] small matters to professionals, but small matters that can have a significant ability to reduce the anxiety and fear Laura feels in her situation. If [there is] meaningful discussion between parties now, Laura’s feeling of being scared may be ameliorated. I want the order to be given to Laura tomorrow so she has some agency. I can’t understand why she can’t have Deliveroo – she has money. I am not putting forward a position. The point is this: she is in a vulnerable position, she is scared and vulnerable. My job is to protect her – I don’t want to get into a ding-dong about this is wrong that’s wrong. I understand that there is a dispute […] but if it’s Laura’s misconceptions, if that’s what they are, [they] are making her distressed”. [My emphasis]

The Position Statement of the Official Solicitor (kindly shared by Ian Brownhill) reinforces this view, as well as advocating for fewer restrictions: 

“Laura Wareham’s access to the internet and other restrictive practices must be considered with a view to reducing those restrictions.

Importantly, work needs to start now to build Laura Wareham’s relationship with her treating clinicians and to support her parents who are undoubtedly an important part of her life.”

I thought that Judge McKendrick articulated the key relational point: Laura is ‘scared and vulnerable’, no matter the intricacies of the ‘ding dong’. As the judge said, some issues might be “small matters to professionals, but small matters that can have a significant ability to reduce the anxiety and fear Laura feels in her situation”. I would add to that: perhaps these small matters might improve Laura’s chances of being deemed capacitous to make certain decisions, or at the very least to improve relationships with the system around her. Importantly, Ian Brownhill’s position statement submitted, “work needs to start now … build[ing] relationship[s]”. And this is the responsibility of those caring for Laura to take the lead, despite feeling alienated.

I really hope that by the next hearing in April 2024 some progress will have been made towards some agreed best interests’ decisions, for all concerned. 

Claire Martin is a Consultant Clinical Psychologist, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Older People’s Clinical Psychology Department, Gateshead. She is a member of the core group of the Open Justice Court of Protection Project and has published several blog posts for the Project about hearings she’s observed (e.g. here and here). She tweets @DocCMartin

Forewarned is forearmed


By “Rose”, 15 March 2024

I am a potential future ‘P’ – a disabled woman who has a history of making unwise decisions about my physical health. 

From the moment a potential application to the Court of Protection was mentioned to me a few years ago I felt panic. My logical head understood why my professionals needed to be sure I had the capacity to make decisions that put my life at risk, but the larger part of me (in that very moment) felt almost threatened. I’ve never had my capacity questioned. I’ve always been able to make my own choices about my life and never saw that changing.  Who does? That day I learnt anyone could become ‘P’.

I knew nothing about the Court of Protection, and I went on a fast learning curve whilst seriously unwell. I don’t think I fully understood it at the time. The idea of others making choices on my behalf in my best interests terrified me. Who can know what I require more than I? My life with disability means I have more insight into having my life run by others as I am unable to complete physical tasks myself. It frightened me.

Thankfully, I didn’t end up in court, but it’s left its mark on me and I’ve wanted to understand the process ever since.

I reached out to the Open Justice Court of Protection Project to find out about  observing a hearing. I explained how uncomfortable I felt at the idea of witnessing such a stressful time in a family’s life. I learnt that opening up the process to public scrutiny can improve the court process, including exposing shortfalls in the system, and  hopefully that would lead to changes (see: “How being watched changes how justice is done).  I also learnt that observers can be excluded if the person at the centre of the case objects to their presence sufficiently to interfere with the justice process. This comforted me.

 I’ve read a lot of the blogs and not seen any cases that came close to my situation. There are plenty of eating disorders, mental health issues, learning difficulties and a plethora of elderly cases.  Then I read about Laura Wareham, and decided to observe her hearing.  

The blog post about the previous hearing gave me insight into the case so far, which aided my ability to follow the hearing. I’d recommend a nervous first timer choosing their first hearing to observe to pick a case which has been blogged before, if possible, so that they understand the background.  

My disability impacts on my ability to schedule so potentially I wouldn’t be able to utilise the link the court sent me for some or all of the hearing. My level of disability also meant I might have to leave the hearing without notice. Celia Kitzinger explained the courts may pause proceedings while attempting to reconnect me (this has occasionally happened to her) and suggested I make them aware in advance that if I drop out, they should continue without me. This I did in an email the night before. 

I had gone to the ‘test page’ in advance too, to check my mike and camera worked fine. This made me feel less pressured when it was time to enter the waiting room 15 minutes before the start time. I connected with Celia separately via WhatsApp which settled my nerves as she kindly confirmed that what I could see on screen was correct. The various black boxes I could see each had a name underneath of the participants & a large box which suddenly showed the courtroom. Confirming I could see and hear everything was only thing I had to say throughout the hearing.

There was very little opening summary of the case for us observers. If you just wanted to watch a case to get a feel for things, this isn’t an issue, but I was pleased I had read up a little first.

Before we got very far into the hearing, Celia interrupted the proceedings by turning on her camera and speaking in court to alert the judge to Laura’s plea in the chat box that nobody else appeared to have noticed. Laura had joined the platform but was not able to hear anything – so she had no access to her own hearing.   Of course, observers are not supposed to interrupt court hearings in this way and Celia told me she was embarrassed to do this, and it’s probably against the court rules – but of course the court did want Laura to be able to take part in the hearing about her, and the judge did not rebuke Celia. The chat box is usually (though not always) available for raising tech issues (and tech issues only!). 

We spent more than twenty minutes waiting for alternative tech options to be sourced for Laura. Celia explained that since Laura had declined to see her solicitor that day, she might not have access to the laptop she would otherwise have used. 

I asked what would happen if Laura ‘s issue tech issues was not solved? I felt frustrated at the idea Laura’s hearing might go ahead without her. Celia suspected this judge would pause things, but I would have assumed that P would always be involved in the hearings. It doesn’t sit well with me that it wouldn’t be automatic, but Celia told me that many Ps don’t want to come to court at all, and many prefer to meet with the judge and tell the judge their views privately in a meeting outside court. Laura is unusual in wanting to be present at every hearing and to have her say.

The long delay this case experienced – almost an hour in the end – because of the tech problems was unusual, so I’m informed.  When we were up and running again I was surprised how relaxed the process was. The judge wore no wig or gown for example. I can imagine it might make the process a little more comfortable for P. Celia requested (via the chat box) that the camera should be moved to focus on whoever is speaking at the time  – the judge, or the witnesses –  rather than just where the lawyers were sitting. This was done, and it made it easier to pinpoint who was speaking.

Having Celia available via WhatApp to ask questions helped me to follow who everyone was, and which party they represented and (in the case of witnesses) their expertise. I also learnt that Laura isn’t allowed to instruct her own solicitor (because she’s been found to lack capacity to litigate) meaning she has no representation of her own: as is usual in such cases, her ‘best interests’ are represented by the Official Solicitor. I’d have thought she would have some say over both who her solicitor was, and what arguments were raised in court by “her” (i.e. the Official Solicitor’s) barrister.  Celia told me “her wishes and feelings must be taken into account but are not determinative”.  In relation to requesting treatments, she added that Laura’s wishes wouldn’t be determinative if they agreed that Laura did have capacity to make her own medical decisions either – because requesting treatment doesn’t necessarily mean that the doctors will give it.. This too left me uneasy, as I couldn’t help but imagine how I would feel if I were in Laura’s shoes.

It was difficult to hear that some of the reasonable adjustments that had been previously agreed and that might assist Laura in this hearing had not yet been put in place, for example a word processor. I was angry on her behalf that no professional knew why this had not happened weeks ago. I had assumed these would have to be in place well in advance.

Bureaucracy is bad enough at the best of times but I can see how every little delay like this must gripe for Laura and could reduce the level of trust in the team tasked with representing her, let alone the process itself.

A real low point for me was when one of the experts stated “I recognise her human rights may be infringed but that is not the remit of this court”. A stark reminder of the power the Court of Protection holds and its limitations.

I was finding it hard to concentrate at this point. This is common for me later in the day.

Before I knew it the first day of the three day hearing was over. Unfortunately, I was unable to attend the other two days, but I found myself a silent cheerleader for Laura both days. I wasn’t there to hear the judgment, but was sad to hear the judge’s decision was that she was deemed not to have capacity to make any of the decisions she wanted to make for herself.  

Laura has found herself caught up in a system duty bound to protect her. It has taken over eighteen months to get to this point. I had hoped any application to the court would be dealt with swiftly, considering the restrictions that P has to live with in-between times. While cases like Laura’s should not be rushed, it’s imperative they don’t drag on any longer than necessary. Sadly, like any court cases there are delays.

I was left with many questions from the day, a few being: Why does Laura not having litigation capacity mean she is deprived of choosing a solicitor herself? How is it acceptable that reasonable adjustments previously agreed aren’t put in place in a timely manner? Why is this not monitored better? Is there nothing more that could be done to support not just P, but the family who are a part of this too? I have no doubt that the court acts with P’s best interests at heart, but I can see how P and the rest of their family might feel differently at times.

I hope I never end up before the Court of Protection. But should the worst happen, I now know a lot more about my rights. I have a better idea of what it feels like to attend a virtual hearing. I’m reassured that ‘P’ really is front and centre of the process.

Losing one’s decision-making abilities and liberty to live where you choose is something society imagines only happens when you commit a crime. Not when you become unwell or make a decision an expert disagrees with. Our government needs to publicise the Court of Protection and the power it has over the most vulnerable. Only then can there be true trust in the system and more proactive attempts by society to safeguard our own futures by making our wishes clear.

I’d recommend everyone takes steps to record their future wishes so what they want is clear to everyone.  You can appoint someone you trust to make decisions for you (a Lasting Power of Attorney) or write down your wishes in an Advance Statement.  If there are treatments you know you would want to refuse, you can make an Advance Decision to Refuse Treatment. None of these will guarantee that you get what you want, but they will help.  

If you can, I’d recommend observing a hearing in the Court of Protection, with support from the Project if required. You never know when a loved one or even yourself might find yourself the subject of it. While the process might be daunting, and the professional language taxing for some, it would still give you insight into the process that you cannot gain from reading a blog.

To be forewarned is to be forearmed.              

“Rose” is the pseudonym of a disabled woman concerned about the possibility of becoming a “P” in the Court of Protection.

An articulate and intelligent P is found to lack capacity: Laura Wareham in court

By Amanda Hill, formerly “Anna” 14 March 2024

I observed all three days of the public hearing concerning Laura Wareham (COP 1397774T) from 19th to 21st February 2024. But the part of the hearing that will particularly stay in my memory was Laura’s statement to the court, lasting for about 30 minutes. She spoke eloquently, articulately, knowledgably and passionately. 

Laura Wareham has Ehlers Danlos Syndrome and autism spectrum disorder.  She and her parents say that she has capacity to conduct proceedings and to make her own decisions about residence, care and contact. Both the Health Board and the Official Solicitor (representing Laura) submit that she does not.  The question of Laura’s capacity in these domains was what the court had to decide at this hearing.

Two experts were instructed: Dr Camden-Smith (jointly) who found that Laura lacks capacity in all these domains; and Dr Eccles (instructed by Laura’s parents) who accepted, in cross-examination, that she could not assert that Laura had capacity in any of them. 

At the end of the hearing, the judge decided that Laura lacked capacity to conduct proceedings and make decisions about residence, care and support, and contact with her parents. The judgement is published here: Laura Wareham v Betsi Cadwaladar University Health Board & Ors [2024] EWCOP 17l

Both Laura’s parents were in court, and her father gave evidence (discussed below). It’s quite common to see members of P’s family in court – in my mum’s hearing, both my sister and I, as P’s family members, attended – and I was a party to the case as a litigant in person and my sister was a witness. 

But it is much less common to hear from P themselves in court – as we did from Laura in this case. The judge in my mum’s case made it clear that she could meet with my mum – although my mum declined this.  It’s called a “judicial visit” and there’s official guidance here, which states: “A decision to visit P, either remotely or in person, will always be a matter for the individual Judge to determine”.

In this case, Laura wanted to appear in court so that her voice could be heard. The judge also made it clear that he wanted to pay a remote (via MS Teams) judicial visit to Laura to tell her in private about his decision after the closing statements and before giving his oral judgment in open court. 

Before Laura spoke in open court, her father, Dr Conrad Wareham, gave evidence, and this helped me to build a picture of Laura. He described Laura for the court.

He said she is a very kind, empathic and thoughtful young woman. She loves animals and pets. In terms of hobbies, she enjoys doing different crafts and photography. He also said that she really enjoys church activities.  In terms of her decision-making capabilities, he stated how she was very evidence-driven and does not just accept what somebody says because of their qualifications or title: she wants to verify and look things up and discuss the ramifications. Once she’s made up her mind, she doesn’t change her mind easily, but she will re-evaluate, seek out evidence and test it. 

When the judge asked if she had always been like that, Dr Wareham replied that she had, even as a child. She could always tell the difference between Wikipedia and a peer reviewed journal article. When asked by his solicitor whether he believed Laura had capacity to make the relevant decisions, he replied “I strongly believe Laura has capacity. I recognise the fact that the way Laura processes information may perhaps be different from a non-neuro-diverse person, but it’s still valid.  She’s able to comprehend a balanced view of an argument. I agree with the expert witnesses that not getting the information, when she’s as evidence-driven as Laura is, makes this extremely difficult for her. And she doesn’t take someone’s opinion as fact just because of their title. Experienced people have made mistakes in her care. Doctors can be fallible and can be wrong.” [1]

He described recent contact he’d had with Laura via Teams which included in-depth discussions about a multitude of topics such as about Genesis and Revelations in the Bible, and about politics in the Middle East. He used these as examples that Laura was abreast of “these sorts things and that she can see different points of view”. He said that she “can at points play devil’s advocate”. 

Listening to Dr Wareham speak, I found myself thinking ‘Laura does not sound like a person who does not have capacity’. His description of Laura undoubtedly influenced the view I had formed of her, before I heard her speak. 

I had also heard agreement in court that the diagnosis causing Laura to lack capacity was her autism. I don’t know a lot about autism, but the term that I’d heard Dr Camden-Smith, the jointly-instructed expert witness, use stuck in my mind: “rigid”. This also influenced the picture I had painted in my mind of Laura.

Laura’s statement 

Here are some observations from watching Laura speak in court.

Laura showed understanding of and consideration for others, despite the situation she finds herself in. For example, after the judge explained to Laura why he was asking her to make a statement to the court, rather than give evidence as a witness, so that she would not be subject to cross-examination, Laura stated “I do understand your logic, Your Honour. I believe my words would be held in more value if I were to speak on same basis as every other witness in these proceedings, but if you’re not comfortable with that I will respect that.” Another example was when the judge asked her to slow down as he was trying to take notes, she said: “Sorry, my brain runs very fast”. Finally, she knew that, because of the transparency order she was subject to, she should not name clinicians. At one point she corrected herself when she had accidently said a name. She later added: “I don’t like referring to people without their names, I’m sorry Your Honour, it’s discourteous”. To me this shows that she is able to take into account the perspectives of others. 

I thought Laura was knowledgeable about the application of the Mental Capacity Act 2005. She said “Starting with paragraph 1.2 in the Code of Practice. My view is that the assumption should at present be that I do have capacity until such time as experts in autism can be assured that all appropriate steps have been taken to maximise my capacity. If we’re going to assume I lack capacity, we should be considering the least restrictive option to protect me from any perceived physical or emotional harm. That’s not happening.”

Laura believes that she does have capacity but seemed to be acknowledging that she might be found not to have capacity by the judge and was then considering the next steps, showing an ability to consider the situation from the judge’s point of view. She said, “I believe I should be allowed to return home with an appropriate care package in place – and if necessary if you still believe despite §1.2 of the Code of Practice of the MCA, that I lack capacity, I believe you could put an order in place that my parents should not enter my room without the presence of a member of staff.  And given I should be having a 2:1 care package that would work.”  

In her speech, Laura showed that she was aware of some of the information that Dr Eccles was concerned she’d not been told: including a possible diagnosis of ‘Functional Induced Illness’. She said that she wanted to be clear that she had not been provided with a document of what her diagnoses are, “or rather what people say they are”.  

She seemed to know about the criteria for assessing capacity, weighing up relevant information, better than I did when I observed the hearing. She stated “It’s very hard for me to weigh up the evidence if all I ever have is what would be considered hearsay.  I’m considered to lack capacity when nothing about the information has been provided to me. I cannot weigh up evidence based upon hearsay to make a capacitous decision because hearsay is not valid evidence”.

She also seemed to know that the clinicians believed her parents were interfering in her care. She stated that her parents were her “advocates of choice”. “I drafted an LPA wishing for them to make decisions.  I made contingencies for two additional parties – one of whom has not been approached as to my views and beliefs. I have gone through my views with my parents. I believe my parents were acting in accordance with the role I have appointed them to. I believe they were acting in my best interests according to my wishes and beliefs”. 

She was also passionate and knowledgeable about human rights, quoting extensively from the Human Rights Act. “In my current placement – the assertion was that moving me here was in my best interests. I attempted to raise concerns about that, including asking for my application to be faxed to the European Court of Human Rights […] under an Article 34 appeal […] Rule 39 to prevent the risk of imminent and irreversible breaches of Articles 2 and 3 […] This was hampered and I don’t think received. I also requested clarification from parties of my rights.”

I had heard Dr Camden-Smith give evidence, often referring to Laura’s ‘rigidity’ with respect to certain topics, because of her autism. Dr Camden-Smith said that Laura’s inability to make decisions about the matters under consideration in this case was caused by her autism.  This led me to believe that Laura would speak in a certain way. I was therefore surprised when I heard her speak, as she didn’t sound rigid in various ways. For example, she adapted to not being able to name people like her clinicians; she accepted she needed to slow down when the judge asked (even if in practice she still spoke very fast);  and she understood that the judge had a different view to her, especially about whether her parents could cause her harm. She also covered a variety of subjects during the time she spoke. It was not just a monologue on human rights, which Dr Camden-Smith had said she tended to be “fixated” on. 

Laura highlighted the impact of her physical environment and how it was causing her discomfort and the reasonable adjustments she needed.  For example, there was reference to light, and a particular ceiling light causing her problems. Laura’s autism was referred to a lot in this hearing and problems with light is one aspect that can lead to discomfort. Noise was another aspect that was raised during the hearing as being uncomfortable for Laura, particularly the music being played by another resident at her accommodation.

She also raised other concerns about her care. She stated that she had strong religious views and wanted female staff, especially for intimate personal care but this wasn’t always happening. At one point she said, “On numerous occasions, my food was not of a consistency I can swallow without inhaling it and choking. I asked to speak to Safeguarding. I’ve been told the Safeguarding head is fully aware but they haven’t made time to discuss with me”. Laura feels that she isn’t being listened to and that her concerns are being ignored. I would be extremely frustrated, to say the least, if that was me. She wants to be able to order food from local supermarkets –  but she is not allowed access to the internet to do that, although the judge did order that this be looked at further, as he gave his judgment. There had been some confusion about what Laura was asking for in terms of food delivery later in the hearing. Somehow, the legal team thought that Laura wanted food delivered from people like Just Eat and Deliveroo. But then Laura used the chat box function to write that she meant food home delivery from supermarkets. She was clearly engaging in the discussion and knew (and accepted) the protocol of not just turning her camera on and speaking.  

Laura spoke eloquently for 30 minutes. At one point I realised that in trying to take notes, I was not focussing on her. So, I put my pen down and spent a few minutes just watching Laura speak, without taking any notes. She was in bed, lying down. The screen was dominated by Laura’s face.  She seemed to me to be speaking without notes, and I could see her eyes moving to the ceiling as if she was visualising what she was saying. I felt very moved watching her, as I just could not imagine what it must be like for her. 

Towards the end of her statement Laura said, “I’m dismayed, frankly at this dystopian society we appear to be living in” and “I honestly don’t understand why my concerns are not being taken seriously”.

A lay person’s perspective 

I am a lay person with some knowledge of the Court of Protection, having been a litigant in person myself, in a case about my mother’s  capacity and best interests in relation to  residence and care. In addition to my own personal involvement, I have observed a few hearings now, and read various blogs published by the Open Justice Court of Protection Project. I thought I understood what it means to have or to lack “capacity” and I really believed that after hearing Laura’s statement, the judge would decide that she did have capacity to make the relevant decisions about litigation, residence, care, and contact with her parents. She had spoken so eloquently and articulately and with a great deal of knowledge about her rights. 

It is easy to have a certain image in one’s head of what a person who lacks capacity to make a decision is like. Many people imagine an elderly relative living with dementia for example, like my mother. Laura did not fit that image. 

However, I have since learned of other cases where P has appeared in court and has also been eloquent and articulate. Here are some examples from the Open Justice Court of Protection Project website: 

 Articulate, Eloquent and Passionate – but does P have the Mental Capacity to Make Decisions about Four Areas of her own Life?

This blog describes a ‘P’ who had been diagnosed with delusional disorder and hoarding disorder. P did not accept either of those diagnoses. The observer was “impressed by the fact that P spoke for most of the 60 minutes of the hearing”. He also stated “P displayed an impressive understanding of various pieces of legislation – for example, she said repeatedly that she doesn’t have to prove her own mental capacity!”. The judge ruled that P did not have capacity to make the necessary decisions under consideration. The judge said that “she was satisfied that P had an impairment or disturbance in the functioning of her mind or brain (delusional disorder and hoarding disorder) and that her inability to make each decision was caused by this impairment or disturbance”.

 Influencing ‘best interests’ decisions: An eloquent incapacitious P

‘P’ in this case, Mr G, wanted to leave his care home and go back to living in the community. The observer sums up how he came across in court “rather like a well-respected retired colleague at a reunion in a barristers’ chambers. The relationship cultivated between him and Judge Jim Tindal also seems mutually respectful, almost collegial”. Mr G seemed to grasp and understand the matters at hand and “his sense of the indignity at being judged incapable of making his own decisions about important areas of his life was painfully obvious”.  

 Improving P’s quality of life pending a s.21A change in residence

P’ was challenging his deprivation of liberty in a care home. He attended the hearing and the observer wrote that he was very unhappy and “conveyed his distress and frustration very articulately”. 

It can be easy to observe a hearing, as I did, and hear a P speak so eloquently, and not understand how a judge can determine that the person does not have capacity to make a particular decision. We hear everyday words like ‘relevant information’ and ‘weigh up’, and take them at face value. I know I did. I didn’t realise how extremely important they are legally and how they underpin the legal concept of capacity, as set out in the Mental Capacity Act 2005, and how important they are for assessing someone’s capacity.  I am learning that capacity is a very complex area which is why experts in capacity do assessments in cases such as this one.

Capacity Assessments

Fundamental to this hearing was understanding the concept of capacity and how it is assessed. To understand more, I returned to the Mental Capacity Act (MCA) 2005, which is available here and also read the resources I have listed at the end of this blog, which I found very useful and which I refer to heavily in what follows: 

Section 2 of the MCA 2005 states that “a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain”. 

So somebody lacks capacity if they are unable to make a decision, about a particular matter, at a particular time, because something is preventing their brain or mind functioning properly.

But how does an expert determine that somebody is unable to make a particular decision? They gather evidence by conducting an assessment. 

Section 3 of the MCA 2005 states: 

3.1: For the purposes of section 2, a person is unable to make a decision for himself if he is unable:

(a) to understand the information relevant to the decision,

or[2]

(b) to retain that information,

or

(c) to use or weigh that information as part of the process of making the decision

But what is ‘relevant information’? This term is not simply an ordinary phrase, but refers to something that needs to be defined at the outset of every capacity assessment. 

I found the resources provided here by 39 Essex Chambers very useful to help me understand better what ‘relevant information for different categories of decision’ are.[3] I now realise that ‘relevant information’ for various decisions is influenced by precedent (i.e. previous legal decisions) but as Alex Ruck Keene of 39 Essex Chambers spells out, that is only a starting point. Relevant information must be tailored to an individual’s situation. It must also be agreed between all the people involved in the process of assessment what the relevant information is. Here’s what it says in his introduction to the latest guidance note on relevant information for different categories of decision:   

“We emphasise that:

a. Starting with the information set out here means that is not necessary to reinvent the wheel each time they come to consider whether a person can make one of the types of decision covered. If professionals start with the information as potentially relevant (or irrelevant) they will be doing so on the basis that they will be following a path adopted as appropriate by the courts;

b. However, because each situation is specific, the information set out must always be tailored to the person’s actual situation;

c. As emphasised in the guidance note (which can be found here) on carrying out and recording capacity assessments, it is crucial to be clear before starting the process of considering the person’s capacity that all those who might be involved in the assessment process agree on what the information is that the person needs to be able to understand, retain, use and weigh. Not being clear about this is one of the single greatest causes of unnecessary complexity, difficulty and challenge.”

I’ve quoted that in full as I believe it is crucial to help lay people reading this blog understand how important relevant information is in understanding capacity decisions. 

I found some particular examples in the guidance note.  For example, concerning decisions about contact with family, “what a family relationship is and that it is in a different category to other categories of contact” is relevant information. What is not considered relevant is “The nature of friendship and the importance of family ties”. 

Relevant information includes an assessment of the consequences, as set out in the following section of the Act:

3.4 The information relevant to a decision includes information about the reasonably foreseeable consequences of—

(a) deciding one way or another, or

(b) failing to make the decision.

Weighing up the relevant information involves assessing the advantages and disadvantages of that specific information related to that specific decision. It goes much further than being able to weigh up different arguments to do with politics or religion.

Essentially, after gathering evidence as to whether a person is able to make a decision using the criteria outlined in section 3 of the MCA 2005, it then needs to be determined if this is caused by an impairment or disturbance of the brain or mind. And if it is, then the person is deemed to lack capacity. Dr Camden-Smith determined that the disturbance of the mind or brain in Laura’s case which caused her to be unable to retain, use or weigh the relevant information was her autism. 

Best practice in evidence-gathering includes not just talking to an individual but also “triangulation”: talking to other people who know the person, for example, those who care for them, medical practitioners, family and friends etc. Once all the evidence has been gathered, then a decision about whether or not the person has capacity can be made. 

Having learned how capacity is supposed to be assessed, I had a much better understanding of the questions being put to Dr Eccles, the expert instructed by the family with the court’s permission. For example, counsel for Laura via the Official Solicitor (Ian Brownhill) asked her if she had identified the relevant information (she said yes but had not put it in her report).  And another barrister asked Dr Eccles if she had gathered evidence from people other than Laura (not sufficiently). Although Dr Eccles is an expert on autism and Ehlers–Danlos syndrome (EDS) she is not an expert in capacity assessments, as she herself stated.

Laura herself acknowledged that she could not weigh up the relevant information, in her eyes because it had not been presented and explained to her in a way that she could understand. She argued that she was not provided with the relevant information in an appropriate format to support her in being able to make a decision, as section 2 of the MCA 2005 states that a person should be.

After learning more, I understand better why there was such an emphasis in this hearing on ‘relevant information’ and ‘weighing up’ that information as part of the decision-making process. From my perspective, I’ve learned that the concept of capacity has a very precise interpretation and meaning according to the Mental Capacity Act 2005, and it is not the same as lay people assume they understand. I’ve made that mistake myself. 

The outcome of the hearing was that, after considering all the evidence, the judge accepted the evidence from Dr Camden-Smith, that Laura lacked capacity to conduct litigation, to decide where to live, to consent to a care and support regime and to decide whether to have contact with her parents. Dr Eccles also conceded that Laura did not currently have capacity, although took Laura’s point of view that this was because of the way the relevant information had been presented to her. 

Irrespective of the key issue of capacity, I observed and listened to a person who was suffering, who felt that she had been treated badly. She cannot instruct her own legal team (and at times she said she couldn’t even contact them).  She is separated from her family. She has no access to the internet, so cannot currently look at websites such as Pinterest, which she wishes to spend time on. The judge acknowleged that Laura was distressed, although he considered it was due to the proceedings. I wondered whether it was also due to her situation. As the judge himself said “None of us can imagine what it would be like to be found to not have capacity to make our own decisions” and “Laura is very intelligent”. 

Towards the end of her statement, Laura said “I want to be removed from this situation to a place I feel safe and secure so that I can demonstrate my capacity to the court”. In response, the judge said: “You have said something very powerful and important at the end”. 

I must admit, I found her whole statement powerful and important and I hope that a solution can be found to reduce Laura’s distress very soon. 

I have described in this blog what I heard and saw while Laura gave her statement. I did this as somebody with various perspectives: as a public observer, a lay person, a litigant in person, and a family member to a P in the Court of Protection. To me, this shows the value of open justice, allowing different lights to be shone on Court of Protection proceedings. I’m glad that I can shine a light on Laura. 

Epilogue: The Judgment 

I mostly wrote this blog in the few days after the hearing, while it was still fresh in my mind. In the past few days, the judgment has been published.  Rather than edit what I originally wrote, I have decided to highlight some key paragraphs from the judgment which I feel shed further light on some of the points I have made. 

First, one important observersation is that in the judgment the judge draws attention to his role in the capacity assessment. I had thought that in effect a judge is assessing capacity because they make the final decision as to whether a P has capacity to make a particular decision or not –  but the judge made his role clear:

“Nor am I carrying out an assessment, formally or informally, of Laura’s capacity. Instead, I am required to read and hear the written and oral evidence on these issues and then apply the law to the evidence to reach determinations.” (§8)

The judge relies on the evidence of those conducting the assessments – not on his own interaction with Laura. This seems to be reinforced by the reasons he gives for not conducting a judicial visit with Laura before the hearing: he did not want to be influenced by his own impression of Laura in coming to a decision about the evidence from the professionals:

“I was concerned a judicial visit with Laura may influence my decision making one way or another, based upon my own observations which could not necessarily be fully communicated in her solicitor’s written note of the meeting. The non-verbal communication and observation undertaken may have provided additional information that would be incapable of being communicated in a written note. Not only is there a risk of unconscious bias; a visit may cause an unfairness to the parties who are deprived of the context and non-verbal communication. Whilst judges are used to hearing evidence and then excluding it, my experience is that a judicial visit can leave a lasting impression.” (§9)

The judge explains that Laura’s statement, whilst allowing her voice to be heard in court, was not used to determine whether she had capacity, but rather would influence decisions he would make about best interests: 

“I consider the qualified duty on the court to ensure Laura’s participation in these proceedings is principally directed at best interests decision making. Sections 2 and 3 (of the MCA 2005) which deal with capacity do not provide for a similar qualified duty. Whilst I accept that the court’s determination of the capacity issues is a “decision affecting [Laura]” the common sense reading of this duty is that it relates to best interests.” (§10)

“For the avoidance of doubt, I did not meet Laura (or hear from her in open court) for the purposes of my need to meet her to consider her capacity, or otherwise.” (§11)

Secondly, in §81 to §86 of the judgment, the judge sets out all the ‘relevant information’ that the parties considered relevant in assessing whether Laura had capacity to make certain decisions. It is extremely detailed and can be found here.

 It has become clear to me that ‘open justice’ means a lot more than simply admitting the public to the court to observe proceedings.  In order to understand what’s going on we need to be willing to learn some law – especially around the Mental Capacity Act.  Knowledge and understanding should not be assumed, and we should wary of assuming that we understand what sound like ordinary everyday terms (e.g. “relevant information’). And professionals should not assume that lay people understand all the legal points too, even when they seem to be obvious. I know from experience that it isn’t easy.  Open justice means not only exposing us to the Court of Protection and how it works, but helping everybody understand it too.

Anna was the pseudonym of a woman whose mother was a P in a Court of Protection s.21A application.  Since March 2025, Amanda Hill is allowed to reveal that she is Anna, because the Transparency Order covering her Mum’s case has been varied (changed). Amanda Hill is a PhD student at the School of Journalism, Media and Culture at Cardiff University. Her research focuses on the Court of Protection, exploring family experiences, media representations and social media activism. She is a core team member of OJCOP. She is also a daughter of a P in a Court of Protection case and has been a Litigant in Person. She is on LinkedIn (here), and also on X as (@AmandaAPHill) and on Bluesky (@AmandaAPHill.bsky.social). 

Appendix: Useful resources for understanding Capacity and Capacity Assessments

Capacity: The Key Points Webinar by Alex Ruck Keene

Carrying out and recording capacity assessments: 35 Essex Chambers, March 2023

Relevant information: Guidance note from 35 Essex Chambers updated 1st March 2024

[1] I made notes during the hearing but as I don’t touch type and we aren’t allowed to record, it’s highly likely that my quotes will not be 100% correct.

[2] If only one of these is found to be the case, the person is deemed to lack capacity.

[3] By chance, this has been updated a few days ago in early March 2024 as I have been finalising this blog, so it is very up to date

US expert to assess whether COVID-19 vaccination is in P’s best interests 

By Celia Kitzinger, 12th March 2024

He’s in his early 20s with a severe learning disability, having been born with partial Trisomy 13, meaning that he has an extra chromosome.  He also has a congenital heart condition known as “Tetralogy of Fallot”. He lives at home with his mother who is his primary carer (though he also attends a day care centre).  He hasn’t been vaccinated against COVID-19 – and that’s why this case is back in court.  

This case (COP 13905631) has already been heard, and judgment given, more than a year ago, on 8th September 2022.  His Honour Judge Burrows made an order that it was in P’s best interests to receive the vaccinations, and refused permission to appeal.  

On 16th December 2022, Hayden J also dismissed the application to appeal. 

The mother’s attempts to reopen the matter in 2023 by reference to the evidence of an external expert, Professor McCaffrey (see Appendix for links to his work), have also failed.  She’s exhausted her right to appeal.

But Tom (not his real name) is still not vaccinated. His mother has refused to agree to a date when this can happen. And she’s moved her son from his previous GP (who supported vaccination) to another who does not.  

This is an application from the Integrated Care Board (ICB) responsible for Tom’s care – represented by Adam Fullwood of 39 Essex Chambers. The ICB is asking for an order to compel his mother to cooperate with the vaccination programme. It was heard (remotely) by Mr Justice Hayden on 8th February 2024 sitting in the Royal Courts of Justice.

Tom is represented by an “alternative legal representative” (ARL) who has instructed Oliver Lewis of Doughty Street Chambers as counsel.

Tom’s mother is represented by Paul Diamond, an independent practising barrister, who was making the case for a “reconsideration” of whether it was in Tom’s best interests to receive vaccinations against COVID-19.

Position of the applicant ICB

The applicant, NHS Cheshire & Merseyside Integrated Care Board is clear:

“The order of HHJ Burrows remains valid and must be given effect to. There is a public interest in finality and an end to litigation not least by reference to the stretched and finite resources of the courts and public bodies […] The ICB seeks orders from the court to give effect to the order of HHJ. Burrows including orders requiring [the mother] to cooperate with all arrangements to give [Tom] the vaccinations for Covid-19 at a time and place to be confirmed.”

In her position statement, the mother had raised again the issue of Professor McCaffrey’s evidence (which the judge had already declined to admit), and wanted him to be formally invited to provide expert evidence to the court. The ICB strongly opposed this because it would lead to “significant delay and costs” for this case, and also because “it amounts to a challenge to the national guidance (JCVI/Green book) and the science behind that”.

“With all due respect to Professor McCaffrey his evidence stands as his own personal opinion in contrast to the JCVI/Green Book guidance which is approved by HM Government, is based on significant peer-reviewed research and is applicable to the administration of vaccinations against Covid-19 in this country.”

Judicial considerations

The judge made clear at the outset of the hearing that “everyone from different perspectives has [Tom’s] safety and welfare at heart.  I am not going to get sucked into oppositional perspectives”. 

Nonetheless, he raised some concerns.  

He was baffled as to how “a doctor confronted with a judgment, upheld on appeal, that vaccination was in [Tom’s] best interests, how did that doctor feel she was in a position to completely disregard it?”  Later he said, “she should have declined to be his GP if she couldn’t deliver on his best interests”. 

The judge asked “what on earth was happening over all this period while an order of Judge Burrows was in force? I don’t get a sense that anything forceful or muscular was done. There seems to have been a lot of handwringing. It’s difficult to understand what was so challenging”. 

There was the following exchange:

Counsel for ICB:  Perhaps the ALR characterisation was right that “the ICB was being a little too accommodating of [Tom’s mother]”.

Judge: They’re putting their patient second to [his mother] is what that means.

Counsel for ICB: They were trying to reach consensus.

Judge: But Mr Fullwood, the case had already been litigated. And upheld on appeal. To say that the ICB was trying to be cooperative and conciliatory and working together in circumstances where it’s already been litigated is unhelpful. It’s unhelpful to [Tom].

Counsel for ICB: On behalf of the ICB I acknowledge that the delay that [Tom] has experienced is unacceptable.

Judge: It is. And this should have been line number one of your submission.

Counsel for ICB: I say that now, and I say it genuinely.

Position of Tom’s mother: Parental rights

The “framing” of the argument by Tom’s mother and her counsel was in terms of parental rights in relation to incapacitated children over the age of eighteen.  The position they argued for was that the state should not override the rights of parents of incapacitated adult children without evidence of significant harm: “a child does not become the creature of the State as soon as the child turns 18,” said counsel for the mother.

Counsel turned for support for this proposition to Birmingham City Council v D (Equality and Human Rights Commission & Others intervening) [2019] UKSC 42, [2019] 1 WLR 5403] and to the common law principle of parental rights and responsibilities which continue into adulthood.

“The simple question is who should and who can exercise autonomy for [an adult without capacity]: the parent, the Court or the State?  The idea that an incapacitated individual, with the mind of an infant in the body of an adult, has ever been able to exercise freedom is misconceived. He has no freedom to be protected; it is position in his family, the protection provided by his family, that is to be protected […]. For the Court and/or the state to assume, absent circumstances of urgent and unquestionable need, the responsibility for decisions within a family is not only an overreach in respect of the family but fails to recognise that respect for an individual’s dignity includes respect for his family life.” (Counsel for mother)

The judge didn’t show much patience for this line of argument.

Counsel for mother: We don’t think the court has jurisdiction to interfere with the reasonable decisions of a competent parent.

Judge: The law is crystal clear on this. He’s an adult.  He has the autonomous rights of any other adult – and they are given effect to through his ALR and ultimately through me.  Would you like your father to be taking decisions about you? (silence). You don’t need to answer that. But the vacuum cannot be filled by a parent however loving or well-meaning.

Counsel for mother: You’ve made your view clear on that.

Judge: I’ve made the legal position clear.

Counsel for mother: I accept it’s closed.  I just point out to you that Mumby and the Supreme Court have left this open in Birmingham City Council v D [Equality and Human Rights Commission & Others intervening) [2019] UKSC 42, [2019] 1 WLR 5403]

Judge: No. This is about [Tom].  It’s not about people ventilating fascinating points of law in the Supreme Court. I am not going down that avenue.  So can we turn to the issues here.  What you’re asking for is a reconsideration of the best interests decision.

My reflections on this exchange

I was somewhat taken aback by the judge’s question, “would you like your father to be taking decisions about you?”.  It was an unexpectedly personal question to a barrister making a case for his client.  His personal views are strictly irrelevant.  

But it did make me think.  Would I prefer my father to make decisions about me if the alternative was a judge in the Court of Protection?  Oh yes!  A thousand times, yes, because my father and I had many conversations about medical treatments and what each of us wanted (which wasn’t the same), and I had every confidence that he would have known my views.  

In fact, I don’t need anyone to make decisions for me about COVID vaccinations because I’ve put my refusal of them in my (legally binding) Advance Decision to Refuse Treatment (ADRT). My father died last year, so he won’t be the one involved in making decisions for me anyway.  But I have appointed other family members to be the decision-makers for me in the event that I can’t make decisions for myself (for any decisions I’ve not already made in advance in my ADRT). I’ve made a determined effort to avoid a judge ever being in the position to make health and social care decisions on my behalf.

I’ve been able to make an ADRT and to nominate family members I trust to be my decision-makers because I have the requisite mental capacity to do so.  The problem for Tom’s family (as for the parents of other learning-disabled adults) is that Tom has never had the mental capacity to make a legal document refusing treatments or specifying that he wants his parents to be his decision-makers – and so the law currently seems to mean that there are circumstances under which those decisions default to others, and in this case to a judge.  But my own experience means that I can quite easily accept the position put forward by counsel for the mother that Tom might, if he could, prefer the decision of his mother – who has looked after him all his life and upon whom he relies for daily care – over that of a judge. 

Appointing the expert witness

The mother’s concern about COVID vaccination is that the risks and benefits have not been assessed for people (like her son) with Trisomy 13.  She is asking the court to commission an expert report from Professor McCaffrey (the expert she’s already consulted herself). He’s a Professor in the Department of Paediatrics in the Division of Neonatal-Perinatal Medicine at Chapel Hill University in North Carolina, and medical advisor to the Support Organisation for Trisomy (SOFT), Be Not Afraid and the Trisomy Alliance (see appendix for some more information about him).

Professor McCaffrey has already prepared a report for the mother (on 17 January 2023) in which he says that the evidence shows that Trisomy patients have a potential 17-fold increase in the risk of myocarditis after vaccination and that the risk of death from vaccination is fivefold higher than the risk of death from Covid.

Counsel for the mother complained that “wholly unacceptable comments” had been made about her proposed expert witness. The alternative legal representative (representing Tom) had – he alleged – “criticised his Catholic faith”. 

“I don’t think this has anything to do with religion at all”, said the judge.  “This is about science and the evaluation of risk. I’m really not wanting to hear vituperative remarks from either side”.

There was some consideration of the basis on which this case was being re-opened.  I’m not very clear quite what was decided. Here’s what the judge said:

“I don’t think I would be in this position at all if the application had been brought to me to make promptly, but the passage of time means we now live in a world which is more questioning of the pandemic regime, and healthily so, now that we are out of it.  This offers an opportunity properly to evaluate this question rather than to deal with it in summary format.  But COVID has not gone away.  [Tom] is still vulnerable. On the very general framework of government guidelines he continues to be vulnerable… but although he’s had COVID he’s fit and well, so that causes me to think if there is a possibility of looking more closely at this, it may be productive.  I noted as I was reading Professor McCaffrey’s report and checking his references … inevitably all those papers were published around April 2023, so that illustrates strikingly the evolution of our understanding during the course of the pandemic.  I don’t know if I will ultimately find Professor McCaffrey’s report to be informative of the correct decision, but I would like it to be afforded an opportunity for its fullest consideration.  […] The key arguments properly distilled and advanced by Mr Diamond are those in Professor McCaffrey’s first statement where he emphasises that the efficacy and safety of the vaccine for COVID-19 in a cohort of Trisomy patients has never been studied in randomised clinical trials…. […] In a different climate where [Tom] has shown himself able to fight off one COVID infection and not to have been more susceptible than others, it strikes me as providing a reasonable and proportionate opportunity to evaluate whether there’s any substance in Professor McCaffrey’s analysis. […] The appellate route has closed down.  This is a fresh application.”

So, the judge is considering whether or not COVID vaccination is in Tom’s best interests as if for the first time. The next hearing will be before Hayden J on 4th and 5th July 2024.

Celia Kitzinger is co-director of the Open Justice Court of Protection Project. She has observed more than 500 hearings since May 2020 and written more than 100 blog posts. She is on LinkedIn (here), and tweets @KitzingerCelia

Appendix: Work by Martin McCaffrey

McCaffrey, M 2016 Trisomy 13 and 18: Selecting the Road Previously Not Taken Commentary in American Journal of Medical Genetics Part C Semin Med Genet 9999C:1–6. 

A video of Dr. Martin McCaffrey speaking at the Perinatal Conference in Dublin, 2016, YouTube

Judge declines to authorise a deprivation of liberty (for now)


by Daniel Clark, 11th March 2024

While Deprivation of Liberty Safeguards (DoLS) in a care home or hospital have little judicial oversight (unless someone appeals or the restrictions are particularly severe), a deprivation of liberty in the community is reviewed by a judge. These are often decided on the papers, in a streamlined procedure known as “Re X”. However, a judge can choose to list a case for a hearing if they are not satisfied with authorising the deprivation of liberty “on the papers.” This is known as “Failed Re X”, and Eleanor Tallon has written about it here: ‘Failed Re X’: Deprivation of liberty and Re X (the streamlined process) – a social work perspective.

This case (COP 13155577) is one example of an application has ‘failed’ the “Re X” procedure. It was heard before Deputy District Judge Reeder, sitting remotely (via MS Teams) at First Avenue House, on Friday 23rdFebruary 2024. Rebecca Handcock, of Field Court Chambers, represented the applicant local authority, London Borough of Haringey. Richard Alomo, of No5 Barristers Chambers, represented the respondent, MA, via his rule 1.2 representative (who is his mother). 

The hearing began with the judge asking everybody to confirm that they had seen and understood the Transparency Order, which prohibits the publication of any information will identify, or is likely to identify, MA, or his family, or where he lives or receives care. This gave the initial impression that there were lots of observers present but, as it turned out, some of those he asked were actually staff members at MA’s supported living placement. 

Background to the case

The judge gave a very detailed summary of the case, which spoke to not only the letter but the spirit of the former Vice-President’s guidance. I understand that this is quite a usual occurrence for DDJ Reeder, and I was very grateful.

MA is a young man with a diagnosis of autism, and according to the position statement filed on his behalf,  he has what are described as “severe functional and cognitive impairments”. He resides in a supported living placement, and the local authority made an application under the streamlined Re X procedure, seeking the authorisation of his deprivation of liberty. 

When reviewing the papers, the judge decided that he “was not content to grant an authorisation order [because] I didn’t think it appropriate to determine the application for authorisation on the documents”.

In listing the case to be brought before him, the judge identified the precise issues that he required further clarity on.  

  1. The care and support plan “recorded that [Mr A] is subject to regular sedation in order to control his behaviour”, through the administration of Diazepam and Quetiapine. 
  2. The care and support plan was inconsistent: one part appeared to say that no physical restraint was authorised but another part made it clear he could be restrained.
  3. The care and support plan is subject to yearly review but the documents in front of the judge were last updated in mid-2022. This makes the documents out of date. 
  4. The response from the 1.2 representative did not adequately address the matters identified, which appeared to be because she had not seen any updated care plans before signing a previous witness statement. 

Counsel for MA had made an application to adjourn the hearing, which seemed to be supported by Counsel for the local authority. However, the judge declined to do this, stating “I’m concerned with those points that I raised. At the moment [Mr A] is subject to a deprivation of liberty and it is not authorised […] We have a deprivation of liberty which is not currently authorised and […] I like to make as much progress as possible. I don’t like unauthorised DOLS”. 

Addressing the judge’s concerns

The judge did indeed seem eager “to make as much progress as possible”, and many of the issues were addressed in this hearing.

The date of the care plan was addressed very quickly: Counsel for the local authority explained that it was updated in February of this year, and was in the bundle. 

This naturally led to the question of whether physical restraint was being used, with the judge asking what the up-to-date care plan says about this. The brief exchange went like this: 

Counsel for Local Authority: As I understand it, restraint is not asked to be authorised.

Judge: That’s not the question. Those on the ground won’t look at my order, they’ll look at the care plan. Is there any authorisation for any restraint by anybody? 

After some delay in which Counsel took instructions, and a copy of the Position Behaviour Support Plan was located, it was clarified that physical restraint is not authorised for use. In other words, it does not form part of MA’s care and support. All the relevant paperwork clarified this, and the judge was satisfied with the response. 

Further issues with the care plan were discovered when the judge turned to considering medication. 

It emerged that MA has recently undergone a medication review. He had previously been prescribed Diazepam but this had been titrated down (that is, gradually reduced so as not to cause withdrawal symptoms). This meant that the only medication he is prescribed for regular use is Quetiapine, and the judge was keen to understand how often. 

He asked one of the support workers, who had written the care plan, to clarify what it meant that MA has Quetiapine “BD PO”. However, the support worker was unable to say, either because she didn’t know or because she was put on the spot. Counsel for the local authority had to intervene to explain that BD means twice daily. (BD stands for “bis in die” which is Latin for twice in the day. And PO means “per os”, Latin for “by mouth”). 

Once this was cleared up, and it was clear that MA is prescribed Quetiapine “to manage any kind of challenging behaviours”, the judge said that he wanted the review to consider whether this can be changed to PRN (as required) medication rather than routine use. He also said that this was a learning point for Counsel: “It’s better from the horse’s mouth rather than having someone summarising the medication review. It’s better to have the review in front of the court”.  

A 1.2 representative

The final matter for the judge to consider was the involvement of MA’s mother, who is also his 1.2 representative. A 1.2 representative is supposed to represent P’s voice, and ensure that it is heard in the court process. This could be a family member, friend, or paid advocate. This person then files a witness statement with the court, explaining whether they agree that the care arrangements (including restrictions) are in a person’s best interests. 

In order to do this, it is self-evidently important that the 1.2 representative has access to all of the relevant documentation. Without it, the 1.2 representative cannot really speak to whether the restrictions are in P’s best interests. 

In this case, the statement was all the more important because it was clear that there were some problems with MA’s care. Counsel for MA explained that there should have been consideration of overnight stays with his mum: that hadn’t been arranged. The care plan also did not accurately reflect the amount of contact that MA has with his mum. There was also a further issue in that MA’s cooker had been broken for about six months, was being removed on the day of the hearing, but there was no timescale for a replacement – again, this wasn’t reflected in any paperwork. 

The judge was keen to hear the views of MA’s mother, in her capacity as MA’s 1.2 representative but also in her capacity as his mother. As the judge pointed out, “the role of a 1.2 representative is very important, it puts you at the front end, you’re noticing things the court cannot see. We’re looking for you in your statement to identify whether there’s anything in the care plan, in the arrangement for [Mr A’s] care, that the court might need to interfere with”. 

This really underlined the importance of family involvement in the care and support of any P, who do see things on the ground that the court either cannot see or are purposefully not made aware of. This is true outside of court proceedings: the family members of those who receive care will notice things that paid carers simply will not see because they do not know that person as well. 

Given that MA’s mother had been unable to file a witness statement that reflected her views on MA’s current care, the judge declined to authorise the deprivation of liberty at this hearing. He listed the case again for a on- hour hearing at 2pm on Wednesday 27th March 2024. 

On care plans

This case seemed to be suffused with care plan issues. These are documents that I’m very familiar with because I was a paid carer for a number of years: I read more than I can recall, and wrote some too. This case serves as a good reminder that care plans should be inclusive rather than exclusive, assuming no former knowledge of the “language” of health and social care and Latin initialisations.

The judge seemed to me to be quite right to point out that those caring for MA will not rely on the Order to familiarise themselves with his needs. I cannot imagine a situation in which a member of staff, in response to someone’s behaviour putting themselves or others at risk, would turn to a court Order to decide what to do. The place to look for de-escalation techniques (ways to support a person through their distress) would be the care plan. If that care plan signalled restraint can be used as a last resort, that would be taken as the truth.

In a similar way, new members of staff and agency staff who are not familiar with MA’s needs will turn to the care plan as a source of a guidance. It is therefore imperative that it is accurate and up-to-date – a truth applicable to all care settings. 

Care plans should also be clear. I was quite struck, in the discussion about MA’s medication, that the support worker was unable to say what abbreviations meant. It was explained that they had essentially just been copied from the psychiatrist’s prescription and into the care plan. This does not seem like a very sensible approach because it assumes that everyone reading it will know what it means. But will they? This is the question that needs to be constantly asked when writing care plans

It’s quite probable that the support worker had a momentary lapse in memory (after all, speaking in court even when not formally giving evidence can feel high-pressure). However, a care plan should use language that is immediately accessible and understandable so that even a brief lapse in memory doesn’t affect its intelligibility. For example, I once wrote a plan for a person with complex physical health needs, detailing what to do in an emergency. It would have helped nobody, least all of the hypothetical person turning to the plan for support, if I used highly complex language that required a great deal of background knowledge. So, instead of using phrases like, “If X’s dyspnoea worsens…”, I wrote “If X becomes more breathless than usual…”. 

Jargon and abbreviations achieve the exact opposite of intelligibility

They not only exclude care staff without the requisite knowledge but also exclude a person’s family. For example, it may be the case that MA’s mother, acting as his 1.2 representative, will not be able to understand this element of the care plan. And what of MA himself? While I do not know whether he would either want to access his care plan, it should be written with him in mind. 

Person-centred care planning can only be achieved with the person at the forefront of your mind, and one way to do that was to imagine that the person would be reading it as soon as you’d finished. In reality, the best way to do this is to write a care plan with the person about whom it relates. It should go without saying that even people with quite complex cognitive impairments are able to tell you about their life, what they like to do, and what makes them feel safe and comfortable. 

Daniel Clark is a member of the core team of the Open Justice Court of Protection Project. He is a PhD student in the Department of Politics & International Relations at the University of Sheffield. His research considers Iris Marion Young’s claim that older people are an oppressed social group. It is funded by WRoCAH. He tweets @DanielClark132.

A rock and a hard place: Abortion decision for an incapacitous and conflicted P

By Celia Kitzinger, 10th March 2024

The judgment has now been published and is available here: Rotherham and Doncaster and South Humber NHS Foundation Trust v NR & Anor [2024] EWCOP 17

The 35-year-old woman (NR) at the centre of this case (COP 14216100) is 22 weeks pregnant, and currently detained under s.3 of the Mental Health Act at a psychiatric hospital  in Yorkshire.

The Trust brought the case to court because NR was said to be “consistently wishing to terminate her pregnancy but had been assessed as lacking capacity to make that decision”.  

At a best interests meeting on 26th February 2024, it was concluded that it was in her best interests to undergo the termination, and that the requirements of the Abortion Act 1967 were met.

The case came before Mr Justice Hayden a few days later on 29th February 2024 (at a hearing I didn’t watch). The Trust had made an application for an order declaring that NR lacked capacity to make her own decision about termination and that termination was in her best interests.   

I understand that what happened at that hearing was that the judge directed the parties to file more evidence – including about the circumstances of NR’s previous termination, and the circumstances of her two daughters having been taken into care.  He also wanted more evidence about NR’s wishes and feelings.  The hearing was listed to continue on 5th March – and as it turned out ran over on to 6th March as well  (and I watched both days).

It was a painfully difficult hearing, with sometimes conflicting and uncertain evidence, claims that were not always supported by the written records, and a judge who was very unhappy at any prospect of over-riding NR’s autonomous decision-making, even if she in fact lacks capacity to make this decision for herself.

Unusually for a judge well known for declaring that “delay is inimical to P’s best interests”, this hearing was extended, and the judgment delayed, because he wanted to be sure to “get it right”.   The termination, originally provisionally scheduled for 7th and 8th March, had to be rearranged to accommodate the delay.  “I don’t think I’ve ever pushed back a procedure before on the basis of me requiring time to think, but I do feel in this case very comforted by the fact that I have more time” (Judge).

In the end, the judge issued an order declaring that 

  1. NR lacks capacity to conduct the proceedings and to consent to undergo a termination of her pregnancy.
  2. It is lawful for NR to undergo a termination of her pregnancy in accordance with the attached Care and Conveyance Plan. 

It stops short of saying (as the Trust had originally sought) that termination is in NR’s best interests. The words “best interests” are not in the approved order.

The “Care and Conveyance Plan” incorporated into the order makes clear that NR’s agreement and cooperation is required at every stage – from getting into the vehicle to take her to hospital for a termination, to taking prescribed medication, receiving an injection to stop the foetal heartbeat, and accepting general anaesthetic for the removal of the foetus.  If she says she does not want this, the care and conveyance plan will be stopped at any point (up to foetal death/ general anaesthesia). 

The judgment has already been published (click here: Rotherham and Doncaster and South Humber NHS Foundation Trust v NR & Ors. [2024] EWCOP 17) and provides a full account of the judge’s final reasoning as well as extracts from the care notes (also displayed on screen in court) upon which some of his reasoning was based. I recommend reading it.

Given the availability of the judgment, what I want to do here is focus on my experience of observing the hearing as it unfolded in real time.  It shows the different avenues the judge explored and how he approached the dilemma he was presented with in court. The things the judge said in court are his “working out” of the – somewhat surprising –  solution he eventually arrived at in the approved order.

The hearing 

My overwhelming impression of the hearing from start to finish was that Mr Justice Hayden was extremely uncomfortable with the idea of ordering that NR’s pregnancy should be terminated in the absence of strong and clear evidence that that’s what she wanted. The problem was that although the initial position of the applicant was that NR wanted a termination, the evidence turned out to be much more equivocal.  

It became clear, to varying degrees, to everyone in court that NR was deeply conflicted about whether or not to continue her pregnancy. Between mid-January, when she was admitted to the psychiatric hospital and early March in the days before the court hearing, she is recorded as having said (for example): “I don’t want to kill it (baby) but I can’t keep it, cause I am not well“; ” I don’t want this baby […] I am not happy about killing I can’t look after it, but I can’t kill it“; “I can’t kill it, please don’t let me kill it but I don’t want it either. I can’t make this decision I don’t want to make this decision It’s too late but I can’t keep it“; and most recently (on 4th March) “I don’t want to kill it but I can’t keep it and I don’t want it to go into care, so I’ve got to get rid of it“.

As counsel for the local authority said “NR finds herself between a rock and a hard place”.

Summary of the case

The hearing began with a summary from counsel for the applicant Trust, Parishil Patel of 39 Essex Chambers.  

He said that NR has had a “chaotic” life, including cocaine and alcohol abuse and that she was a victim of domestic violence from the father of her two children. 

Following previous admissions (with a range of diagnoses including psychosis, emotionally unstable personality disorder, and depressive disorder), she had been receiving care in the community.  But in mid-January, she discharged herself from community mental health services, stopped taking her medication and became very unwell, such that she “needed to be detained”.  Since then, she has been “severely agitated, at times very abusive and very confrontational, such that she required a period in seclusion for her own benefit and for the protection of other people”.  

According to counsel for the Trust, it  was discovered on admission to hospital that she was pregnant and she has “consistently said that she does not want the baby”.  However, he acknowledged that “the evidence is not as unequivocal as one might see”. 

NR wasn’t in court and I don’t think she’d spoken to the judge either. It says in one of the position statements that she’d been offered the opportunity and declined. She was represented by her litigation friend the Official Solicitor, with Katie Scott of 39 Essex Chambers as counsel.  

The local authority was represented by Leonie Hirst, Doughty Street Chambers.

Capacity

The relevant information that a person must be able to understand, retain and weigh if they are to be found to have capacity to make a decision about abortion is:

a. what the termination procedure involves (‘what is it’)

b. the effect of the termination procedure/the finality of the event (‘what it does’)

c. the risks to their physical and mental health in undergoing the termination procedure (‘what it risks’)  

d. the possibility of safeguarding measures in the event of a live birth.

(from §52 S v Birmingham Women’s and Children’s NHS Trust [2022] EWCOP 10)

If the judge had found that NR had capacity to make her own decision about termination, then the court would have had no jurisdiction.  The decision would rest with NR and not with the judge.

In the published judgment, the issue of NR’s capacity  – and the finding that she lacks it – is dealt with quite quickly, but this occupied quite a lot of time in court.   Counsel offered on a couple of occasions to seek an new independent capacity assessment, but the judge never requested that.  

Mr Patel said that NR lacked capacity to consent to a termination of her pregnancy due to her “mania” which meant she was unable to understand the information relevant to making a decision about termination, in particular “what the termination procedures involves…(‘what it is’)”.  This seems to have been because (as Hayden J says in the judgment, §12) “she was completely adamant that she did not want to know anything about what would actually be involved”.

In court, Hayden J did not see this as necessarily signalling NR’s lack of capacity:

“There are certain things she says about feeling that the pregnancy is at such a stage that she’s carrying a little person and her inner conflict about terminating a little person, which seems to me to go pretty directly to understanding the concept of a termination.  The fact that she doesn’t want to know anything about the details doesn’t seem to me to go to lack of capacity.” (Judge)

The Consultant Psychiatrist who gave  evidence in court described NR as “unable to understand the details” about the termination procedure because “agitation and distress overwhelm her and prevent further information from being shared”.  He said that she was  “pacing the room, putting her head in her hands and just struggling and not being able essentially to perceive and assimilate the information that’s provided”.

Judge: I can see she becomes agitated and disengaged from the issue. You appear to infer from that, that she’s not able to assimilate and weigh what’s involved. It seems to me she may just not want to have the conversation.  There’s a difference between not engaging with the mechanics of the termination and not being able to understand and weigh it.

Psychiatrist: I agree with that Your Honour.

Judge: So where does that take us in terms of her capacity?

Psychiatrist: Her distress and agitation was such that she was unable to talk about it.  It didn’t feel like she was seeking to disengage. It felt was though she was incapable of engaging.

The psychiatrist’s evidence, based on a capacity assessment on 23rd February 2024, seemed somewhat different from the attendance note recorded more recently by the Official Solicitor’s agent (Lauren Crow of MJC Law) from which it appeared that NR been able to engage in a conversation of about an hour on the subject of  termination.  “It would appear therefore that NR is currently presenting differently to how she was 10 days ago”, said the Official Solicitor, raising the possibility of a more up-to-date capacity assessment. 

Judge (to psychiatrist witness): From what you’ve read [from Ms Crow’s attendance note for the Official Solicitor], if there was another assessment of capacity is there anything here that makes you think there is any likelihood of her engaging with the mechanics of termination.

Psychiatrist: Possibly. The main piece of evidence is she appears to have been able to tolerate a conversation for a longer period without reports of her becoming distressed and overwhelmed.

Counsel for the local authority (Leonie Hirst, Doughty Street Chambers) asked the witness “I wonder whether it is easier for her to discuss pregnancy with female professionals rather than males, and you in particular as the responsible clinician?”.  “Possibly”, he replied.  There also appeared to be a possibility that NR’s mental health condition – and with it, her ability to engage in reflection about the choices facing her – may have improved in the couple of weeks since the psychiatrist had seen her since she’s apparently been compliant with medication.  

There was an additional concern: the available options for termination (i.e. medical or surgical, and where) had not been identified at the time the psychiatrist’s capacity assessment was done, so even if she had been well enough to receive that information (which admittedly she probably was not), the capacity assessment could not have been predicated on providing NR with all the relevant information.

The concern then, as expressed by counsel for the local authority, was: “If Your Lordship decides the presumption of capacity is not displaced on the basis that the relevant information has not been presented, we’re in a very difficult position in that she may well lack capacity but there hasn’t been an Act-compliant assessment which permits the court to reach a sufficiently robust determination that she lacks capacity to make a decision about termination”.

The judge ended the first day of the hearing by sharing some of his current thoughts with counsel.

Judge: If we get into the realm of best interests, well that I really struggle with.  I’m uneasy that there has been a professional assessment of what is right for her and a failure to consider her consistent expression that she doesn’t want to kill the baby. And if I find she is ambivalent, vacillating, perhaps torn between her head and her heart, that’s not a space for a judge to take a decision. I don’t think I should be doing that.

Counsel for LA:  The court is obliged to make that decision because there is nobody else to make that decision.

A similar exchange followed shortly afterwards.

Judge:  If she is unable to resolve this issue, I’m not obliged to resolve it for her. If I find she is genuinely riven.

Counsel for LA: It is a best interests question. Her wishes and feelings are not determinative

And as the hearing on 5th March ended (close to 5pm) the judge was still reflecting on the evidence about NR’s wishes and feelings seeming “absolutely balanced” between wanting and not wanting a termination with “challenges for her in either direction”.  

“Let’s be honest about it. Those are my thoughts.  They’re not particularly helpful.  It isn’t helpful, I know it isn’t.  I’m not persuaded that I need to adjourn for another capacity test.  If I find she does not have a settled view, that seems to me to be the most natural reaction of any woman.  And I don’t think it’s the role of the Court to decide upon a termination where the woman herself is ambivalent.  That seems to me to be judicial overreach.” (Judge)

NR’s wishes and feelings

A lot of time on 6th March 20024 was spent on the details of the care plan – much of which was put up on the screen in the court, so everyone could see it. It was explained why it would be necessary for her to travel for 4 hours to a hospital that could carry out the abortion, the details of what was involved and the different ‘stages’ of the medical procedure. That plan is also laid out, in detail, in §38-§41 of the judgment.

The position of the Official Solicitor, also reflected in the approach of the judge, was that the wishes and feelings of NR as to whether or not she wants a termination should be determinative. The problem was identifying just what those wishes and feelings were.

The Official Solicitor had pointed out that following the hearing there would be further opportunities for NR’s views to be canvassed – including via a discussion with the team at the London hospital the evening before she was due to travel there, and once she arrives there, via discussions with the medical team at the hospital.

What was now clear at the beginning of the hearing on 6th March was that the plan had evolved into something that would only be implemented with NR’s agreement.  If she objected to going through with any part of it, the people supporting her would discuss it with her and try to ensure that she was thinking things through and saying what she really wanted – and if she clearly indicated that she didn’t want it, then implementation of the plan would stop.  

Judge: The Trust position is that if she didn’t want the termination, it would not be in her best interests to have it?

Counsel for the Trust: Yes, if she indicates she doesn’t want it, and doesn’t want it to go forward, then it shouldn’t happen.

A lot of time was then devoted to going through the notes to find exactly what NR had said, particularly recently, that might help with determining what her wishes and feelings are.

The judge drew attention to “the quality of her expression, which is graphic, moving and pleading, ‘don’t let me kill it’”.  

There’s the same graphic quality when she says “I have to get rid of this baby”, said counsel for the Trust.  “And there’s also a perception that if she were to carry this baby to term, it will harm her”.  

He showed the judge the place in the records where NR talks to her Independent Mental Health Advocate (IMHA), who asks “Are you wanting to keep the baby?”  “No”, she replies, “get rid of it!”  And later, “I am not having it, because I can’t cope…. I just want to get rid of it”.

The published judgment reproduces, in detail, many of these conversations. They make painful reading.

Judge:  Are you saying her wishes and feelings are so conflicted as to be unascertainable?

Counsel for Trust: It doesn’t feel like they’re unascertainable. It feels like we know perfectly well what she’s saying, but it appears that what she’s saying point in different directions.

Judge: Any woman-  What I can’t see is that the material placed before me points to her wanting a termination, as opposed to being highly conflicted about it.

The judge found it “treacherous terrain” to extract from the evidence that what NR wants is a termination.  Here’s how he puts it in the judgment:

“NR finds herself on the horns of the most invidious dilemma. She clearly, and most probably correctly apprehends that if she carries the baby full term, it will be removed from her at, or shortly after birth. This may even be her wish, though she plainly anticipates the possibility of being ambushed by her own emotions…. Equally, she plainly contemplates a termination, even though that may not sit easily with her prevailing beliefs. Ultimately I do not, as I have said, find that the evidence in this case supports a determined view either to terminate or to continue with the pregnancy.  The evidence, in my judgment, reflects a woman who is paralysed by conflict, which is pervasive. […] … I am entirely satisfied that it would be wrong and unsafe to draw a concluding view as to what NR’s wishes and feelings truly are.” (§37)

At the end of  the hearing, the judge said: “The cases that come before this court are sometimes at the very parameters of ethics, law, medicine, and jurisprudence.  I have found this an extremely difficult case to hear – not least because it is, in its own unique way, profoundly sad.”

Reflections

This is the first time I’ve watched a hearing about terminating a pregnancy.  Some of the issues raised were very familiar to me from other serious medical treatment cases I’ve observed (especially those relating to place or mode of childbirth) – in particular the sense of urgency that pervaded the hearing.  What was unusual was the position taken by the Official Solicitor that the protected party’s wishes and feelings should be determinative, and the way in which that was incorporated into the judge’s order.  I checked out the case law on pregnancy termination to try to understand how an incapacitated person’s wishes and feelings had been previously considered in termination cases.

Urgency and Delay

The issue of delay is often raised in caesarean cases – why didn’t the Trust apply to the court earlier, given that a woman’s mental health status, her likely lack of capacity to consent, and the probable advisability of a caesarean can often be predicted months ahead.

In this case, there was no rebuke from the judge suggesting that this case should have been referred to court earlier, so perhaps there are good reasons why it wasn’t, but I am concerned that  (according to the Official Solicitor) NR had been expressing a desire to terminate her pregnancy since her admission to hospital on 16thJanuary – and it had taken six weeks for professionals to reach the view that she lacked capacity and to arrive at best interests decision for her, and then to get the case to court. That seems quite a long time, given the advancing state of her pregnancy and the cut-off of 24 weeks for termination under the law. 

I am not sure why cases concerning termination of pregnancy come so late to court – at 22 or 23 weeks in other cases also (Re S before HHJ Hilder,  Re SB before Holman J, and Re AB before Lieven J).  It means that judges are under immense time pressure (as also routinely happens with cases where women are refusing – or might refuse – caesareans).  Several judges have  pointed out that they have been placed in a position where they’ve had to write their judgments in a hurry and have not been able to spell out their reasoning in as much detail as they would like. 

The Court of Appeal (in Re AB) advised that applications in termination cases should be treated with the utmost urgency by treating clinicians and court listing officers. Where there was any concern that an application may become necessary, the treating Trust should make an application, obtain a listing (for a final hearing) and then withdraw the application, if a consensus with the Official Solicitor/patient’s family was reached.

Wishes and feelings as determinative

What seemed very different in this termination case compared with the caesarean cases (and indeed almost all other Court of Protection hearings I’ve watched) was the extent to which the protected party’s wishes and feelings were placed first and foremost in the best interests consideration – to the extent that, in his judgment, Hayden J says that NR’s best interests are that “this decision should be NR’s” (§46).  

In the Order, Hayden J doesn’t identify what NR’s best interests are at all.  He merely declares that she lacks capacity and that it would be lawful for her to undergo a termination of her pregnancy in accordance with the Care and Conveyance Plan (which requires her agreement every step of the way).

It’s very unusual for a judge to say that a protected party lacks capacity to make a decision and then, in effect, to hand that decision (or choice) back to the protected party to make.  It means that an incapacitated person’s wishes and feelings determine the outcome. 

The Mental Capacity Act 2005 says that the person’s past and present wishes and feelings should be a component of best interests decision-making about them (§4(6)) and it is absolutely usual for judges to refer to this section of the Act and to ensure that evidence is presented in court about what those wishes and feelings are.  The extent to which the person’s wishes and feeling weigh heavily in the resulting judicial decision is variable, depending on all the circumstances of the case.

There seems to me to be emerging case law – see below – that puts much greater emphasis on the wishes and feelings of a pregnant woman in relation to termination than is usual in other cases.  Indeed, some lawyers (like the Official Solicitor in this case) and some judges  (see below) have suggested that these wishes and feelings should be determinative.  

Case law

When a pregnant woman has capacity to make her own decision about whether or not to have an abortion then (within the law and subject the agreement of doctors), the decision is her and hers alone.

There have been previous cases in the Court of Protection where judges have decided that the pregnant woman had capacity to make her own decision.  In Re S and Re SB the women themselves were requesting terminations. The position of the professionals caring for them was that they did not have capacity, and that it was in their best interests to continue with their pregnancies.  In both cases, the judges decided that the women were capacitous and could decide for themselves. 

The fact that a woman may feel conflicted or ambivalent about continuing or terminating a pregnancy does not render her “incapacitous” to make that decision.  

As the judge pointed out, the dilemma faced by NR is not unusual for women seeking an abortion.  It is a hard thing to be 100% sure of. It is common to feel unsure and to have doubts. As the judge said in Re S:   

“I am conscious that S may not yet have reached a final decision as to whether she wishes to terminate her pregnancy or not. She has told clinicians that she is 70 or 75% sure. ….. It is not necessary that she is “sure” … of what her decision will be for her to retain capacity to make the decision. Perceived ambivalence will doubtless inform the opinion of any clinician asked to undertake the termination procedure as to whether the statutory conditions are met but I do not consider that S’s expression of less-than-certainty amounts to inability to make a decision. Rather, in my judgment, it reflects S’s understanding of the magnitude of the decision she contemplates. The reality is that no one can reassure S that things “will work out fine” if she has the termination or if she does not. Decisions have to be taken without the benefit of a crystal ball.” (§59 S v Birmingham Women’s and Children’s NHS Trust [2022] EWCOP 10)

When it’s determined that a woman does not have capacity to make a decision for herself about termination, then (in accordance with s.4 MCA), her wishes and feelings are normally considered as part of a best interests analysis – as in this decision by Mrs Justice Lieven in Re AB.

“AB’s wishes and feelings are plainly a relevant consideration. There are cases where wishes and feelings would be determinative, even where the person had no capacity. If AB’s wishes and feelings were clearly expressed and I felt she had any understanding (albeit non- capacious ones) of the consequences of giving birth, I would give them a great deal of weight. However, AB’s wishes are not clear. She likes being pregnant, she would probably like to have a baby, but she has no sense of what this means. As I have said I think she would like to have a baby in the same way she would like to have a nice doll. I just do not feel I can give very much weight to those expressions of wishes and feelings. I also take into account that she has no idea of the risks with her mental health that she would be taking by continuing with the pregnancy.” (Re AB before Lieven J  [2019] EWCOP 26).

But Lieven J’s decision was reversed in Court of Appeal for not giving sufficient weight to the woman’s views: she”failed to take sufficient account of AB’s wishes and feelings in the ultimate balancing exercise (§55 (CoA)).  The Court of Appeal went so far as to say that an incapacitous person’s wishes and feelings “can be determinative”:

“Part of the underlying ethos of the Mental Capacity Act 2005 is that those making decisions for people who may be lacking capacity must respect and maximise that person’s individuality and autonomy to the greatest possible extent. In order to achieve this aim, a person’s wishes and feelings not only require consideration, but can be determinative, even if they lack capacity.” (§71, Re AB (Termination of Pregnancy) [2019] EWCA Civ 1215)

The centrality of a pregnant woman’s own wishes and feelings was also underscored in a case heard some years ago by Sir James Munby in the Family Division rather than the Court of Protection (because the pregnant woman was a minor, aged only thirteen).  He said that her wishes and feelings were a “vitally important factor”  which he saw as “determinative”. 

Only the most compelling arguments could possibly justify compelling a mother who wished to carry her child to term to submit to an unwanted termination. It would be unwise to be too prescriptive, for every case must be judged on its own unique facts, but I find it hard to conceive of any case where such a drastic form of order – such an immensely invasive procedure – could be appropriate in the case of a mother who does not want a termination, unless there was powerful evidence that allowing the pregnancy to continue would put the mother’s life or long-term health at very grave risk. Conversely, it would be a very strong thing indeed, if the mother wants a termination, to require her to continue with an unwanted pregnancy even though the conditions in section 1 of the 1967 Act are satisfied. (X (A Child) [2014] EWHC 1871)

At the time Mr Justice Munby made his decision, X was consistently expressing a wish for a termination and he ordered: “It shall be lawful, as being in X’s best interests, for a doctor treating her to carry out a termination in accordance with the criteria as set out in section 1 of the Abortion Act 1967 notwithstanding her incapacity to provide legal consent, subject to her being compliant and accepting of such medical procedure.” 

This, then, is the legal context within which Hayden J confronted the question of NRs’ (incapacitous) wishes and feelings – seeming to want to give them great weight, even to treat them as determinative (as advised by the Official Solicitor), but without a clear sense of what they were, because she was so “riven” and held contradictory views pulling her in two different directions.

There have been similar decisions – leaving the choice to the incapacitous person – in relation to clinically assisted nutrition and hydration (CANH). Hayden J refers in the NR judgment to his own decision in Avon and Wiltshire Mental Health Partnership v WA & Anor (Rev 1) [2020] EWCOP 37

“I consider that every effort should be made, with the parents at the centre of the process, to persuade, cajole and encourage WA to accept nutrition and hydration. Attempts to deploy these techniques should be permitted with far greater persistence than would be considered appropriate in the case of a capacitous adult. I have no doubt that the attempts of persuasion will be delivered in the kindly and sensitive way that is most likely to persuade WA. I make no apologies for repeating that I consider WA has a great deal to offer the world as well as much to receive from it. No effort should be spared in encouraging him to choose life. This said, I have come to the clear view that when WA says no to CANH his refusal should be respected. No must mean no!” (Avon and Wiltshire Mental Health Partnership v WA & Anor (Rev 1) [2020] EWCOP 37)

Hayden J saw this as protecting WA’s autonomy “From this point on the decisions will ultimately be taken by WA with the advice and encouragement of his family and the clinicians, but no more than that”. 

Best interests decisions for people with anorexia have sometimes followed a similar pattern, i.e. that clinicians can supply clinically assisted nutrition and hydration if the patient agrees to receive it, but not if she refuses it, after attempts to persuade her have failed (e.g. NHS Trust v L & Ors [2012] EWHC 2741 (COP))

However, these judgments are “best interests” decisions about the proposed treatment – and they permit “encouragement”, “advice”, “persuasion” in the direction of treatment.

The judgment in NR reads differently to me in that it seems not to make a best interests decision that treatment (termination) either is or is not in the protected party’s best interests – and although there is reference to “verbal encouragement and discussion” (§51) it was made clear in court that this is not to encourage NR to go through with a termination, but rather to encourage and support her considering her own wishes and feelings and making her own (incapacitous) choice. Hayden J says: “It is important that NR knows that I am respecting her rights as an autonomous adult woman to make this decision for herself, with the help of those she chooses to be advised by.  I should also like Ms Crow to explain to NR that whatever decision she takes will have my fulsome support.”(§52)

I recognise that this decision is likely to be compliant (as most COP decisions are not) with the  Convention on the Rights of Persons with Disabilities because it affords NR the same right to decide for herself that a capacitous pregnant woman in her situation would have.  

But that’s not usually the outcome of decisions made in accordance with the Mental Capacity Act 2005, because once a person is deemed not to have “capacity” to make a decision for themselves, someone else (in COP cases, the judge) makes it for them.  It might be the same decision as they would have made for themselves, and it might accord with their non-capacitous wishes and feelings. Or it might not.  Either way, it’s not their decision to make, and their wishes and feelings do not determine that decision. 

So, the surprising outcome in this case (NR) is that the judge says the choice is hers – and there’s to be no persuasion in the direction of a judicially-authorised “best interests” decision.  

Each case in the Court of Protection depends on its own unique set of facts, of course, but I have yet to see any fully articulated argument as to why wishes and feelings should be determinative in pregnancy termination cases and not in cases of (say) court-authorised caesarean sections, or amputations, or other forms of medical treatment contrary to a person’s wishes and feelings.  

I will watch developments with interest.

Celia Kitzinger is co-director of the Open Justice Court of Protection Project. She has observed more than 500 hearings since May 2020 and written more than 100 blog posts. She is on LinkedIn (here), and tweets @KitzingerCelia

Outsourcing legal reporting to a Christian campaign group: Churnalism in “The Times”

By Celia Kitzinger, 9th March 2024

Readers of The Times probably imagine theirs is a superior sort of newspaper.

It’s the oldest national daily newspaper in the UK (founded in 1785) and has been widely seen as the “paper of record” on public life.  It proclaims itself to be a source of news that readers “can trust for honest journalism that informs, entertains and analyses without bias”.  In 2018 The Times was named Britain’s most trusted national newspaper by the Reuters Institute for Journalism at the University of Oxford.

So, I was surprised to discover that last month The Times took paragraphs from a press release sent out by the campaign group Christian Concern, lightly edited, reordered and paraphrased them, and passed this off as original journalism by their Legal Editor, Jonathan Ames.

The 676-word article in The Times, published on 8th February 2024, is reproduced in its entirety in Appendix A.  Take a look.

There are 17 paragraphs to the article.  I’ve reproduced them in the left-hand column. Now look at the right-hand column and you can see that everything except the last sentence is taken either verbatim (for quotes attributed to other people) or paraphrased from the much longer Christian Concern press release.  There’s no information in Mr Ames’ article that isn’t also in the press release.  

Jonathan Ames is described by The Times as “one of the leading law journalists in the UK… with extensive knowledge and experience in the field… an invaluable resource for those seeking reliable and comprehensive information on legal matters”.  None of that knowledge or experience is on display in this article. It relies solely on the press release for “information on legal matters”. That’s means it’s neither “reliable” nor “comprehensive”, and it can’t be trusted.

This looks horribly like a paradigm case of what Nick Davies, award-winning journalist and author of Flat Earth News, calls “churnalism” – the recycling of unchecked second-hand material, with a misleading byline making it look as though a respectable journalist has authored the piece.  Churnalism, says Nick Davies, leads to falsehood, distortion and propaganda in the global media.

Many journalists I’ve discussed this with find the fact that a story in The Times was substantially drawn solely from a press release entirely unsurprising. Rewriting from press releases goes on all the time, I’m told – that’s how most journalism is done these days. 

The “exposé” by Nick Davies and the Cardiff University researchers whose research underpins his book was published in 2008. It shows a “tide of churnalism” across “all local and regional media outlets in Britain” produced by “journalists who are no longer out gathering news but who are reduced instead to passive processors of whatever material comes their way, churning out stories, whether real or PR artifice, important or trivial, true or false” (p.59). This revelation may have shocked readers when it was first published, but sixteen years later, well, it’s just how journalism is.

I’m even told by some journalists that Jonathan Ames may not have “filed the copy” – meaning that it may not actually have been him who rewrote the press release that appears under his name: it might have been another staff journalist and Mr Ames might not even have known that authorship had been attributed to him until after it appeared in print.

Although it’s common to hear sweeping claims from world-weary cynics to the effect that you can’t trust anything in the news these day (I may even have said this myself on occasion), that doesn’t translate into an understanding of the way the system works to manufacture “news” or how it influences what we think we know about the world – or that “Britain’s most trusted national newspaper” is implicated in exactly the same practices as the “inferior” newspapers its readers tend to disparage.

So, what I’ve tried to do here is offer a concrete, specific, forensic analysis of how one piece of “news” was created – from its origins in a case about life-sustaining treatment in the Court of Protection, through its subsequent life as a complaint to the General Medical Council (GMC), then as a press release from Christian Concern, and eventually as a story in The Times.

I can do this because I am part of the story and have masses of documentary evidence about what happened. I was present as an observer in the court case. It was me who made the complaint to the GMC.  And I feature in the press release and in The Times story.  I have a personal stake in finding out what went on, and how this kind of “news” is manufactured.

Unchecked ‘spin’

Christian Concern is a pressure group whose mission is to equip people “to be an effective ambassador for Jesus Christ in today’s culture”.  That mission obviously represents a particular perspective not shared by many people who are adherents of other religious faiths, or none.  Nobody expects Christian Concern to be impartial. Their faith-based perspective naturally affects the way they see and report on the world, and the angle they take on stories.  Whether or not the information they put out is truthful and accurate, it is always selected and designed specifically to promote their own campaigning goals.  Even other Christian publications recognise that Christian Concern is a “self-publicising outfit” engaged in “assiduous publicising of their own lawsuits” (Church Times, 4 March 2024).

It should go without saying that serious mainstream journalists should not simply reproduce information from Christian Concern (or any other pressure group) under their own byline, because that risks the uncritical reproduction of one particular spin on current affairs.  They need at the very least to fact-check and to seek out comments from other points of view.  “Journalism without checking is like a human body without an immune system”, says Nick Davies.

 But there’s no evidence of any fact-checking in The Times article – nor any attempt to access other perspectives.

I feel strongly about this because the article names me, gives false information about me, and uncritically reproduces an accusation from a Catholic priest, Dr Patrick Pullicino, that I “targeted” him in a “discriminatory attack  … based on [his] religious beliefs”. 

Nobody from The Times contacted me to check the story before publication, or asked my opinion about the events reported in the article.

Consequently, the article as originally published had obvious factual errors, which could have been easily discovered with a simple google search. I am neither a professor of psychology at York, nor a campaigner for assisted dying, as The Times originally claimed. A “correction” was published in the print version (The Times, 12 February 2024, see Appendix B) and the online version has now been edited to correct this misinformation.

Nor have I ever attacked Dr Pullicino for his religious beliefs.  I disagree with many things that Dr Pullicino has said and written, but I defend his right to hold the views he does, to express them publicly within the constraints of the law, and to live in accordance with his faith. A journalist for LifeSiteNews asked whether I believe that health care professionals with “pro-life” views should leave the profession. Of course not: “That would be to deprive the medical profession of many fine doctors and other health professionals, and it would be an unconscionable threat to their freedom of belief“.

Other media outlets – unlike The Times –  did seek out my views in advance of publication and published my rebuttal of Dr Pullicino’s claims as part of their reports. The ‘far right’ Epoch Times published a piece (here – requires registration to view) based on the Christian Concern press release, but accurately incorporating my perspective.  There’s a fair and accurate report on the Catholic conservative advocacy website LifeSiteNews: it’s clearly oriented for a Catholic readership whose sympathies will naturally be with Dr Pullicino rather than with me, but it’s well-written, acknowledges – as The Times does not – my academic expertise in the medical condition Dr Pullicino was giving evidence about, and gives adequate space to representing my views. It’s based  on original journalism and independent research.

Shamefully, The Times simply relied solely on the partisan, unchecked, press release  – and when I asked for a ‘right of reply’ I was told only that I could submit a letter about end-of-life decision-making to the Editor for consideration.  I was not tempted by this offer. An invitation to (possibly) publish a letter does not constitute a “right of reply” – nor does the suggested subject matter engage with my concern about having been accused of a religiously-motivated targeted attack on a Catholic priest.

What The Times needs (in my view) is proper legal analyses of cases like this one – involving doctors with disputed expertise and wider issues relating to end-of-life decision-making in the courts. Legal analysis should not be relegated to the “Letters” page and written by members of the public. It should appear on the law pages of The Times. That’s what a Legal Editor is for.

 So, this blog post is, in effect, my “reply” to the misleading version of the story published in The Times, and it offers an alternative legal analysis of the story.

What was the story about?

It all started with a case in the Court of Protection back in 2020.  I attended four successive hearings in this case (held remotely via video-link) and wrote a blog post for the Open Justice Court of Protection Project (see Faith, Science and the objectivity of expert evidence).

The case was about whether or not to continue life-sustaining treatment for a man in a “prolonged disorder of consciousness” (ie. a vegetative or minimally conscious state). The court-appointed expert had diagnosed him as “vegetative”. 

I was interested in this case because I co-direct “Coma and Disorders of Consciousness Research Centre” at Cardiff University and co-authored the Royal College of Physicians Guidance on “Prolonged Disorders of Consciousness following Sudden Onset Brain Injury”.  The subject matter of this case is firmly at the centre of my academic expertise.

The hospital Trust took the view that continuing treatment was not in the man’s best interests.  His wife agreed. She believed he would want to refuse the treatments that were keeping him alive (notably, clinically assisted nutrition and hydration).  His Polish “birth family” (mother sisters, and niece) disagreed.  They believed that, as a Catholic, he would want to continue to receive treatment. 

The case was heard by Sir Jonathan Cohen, who found that continuing treatment was not in the patient’s best interests, and authorised withdrawal.  The judgment is publicly available here: University Hospitals Plymouth NHS Trust v RS & Z [2020] EWCOP 70.

A couple of weeks or so after this judgment was handed down, Dr Patrick Pullicino, who is an experienced neurologist as well as a priest, became involved.  It appears from what he said in court that he learnt about the case in part from Pavel Stroilov, who works with or for the Christian Legal Centre, a “sister organisation” to Christian Concern. 

Under circumstances that were strongly criticised by the judge as a “deplorable ruse”, he examined the patient via video-link and then gave evidence in court that the patient was doing better than expected, was likely to be in a “minimally conscious state” – or on the way to becoming so – and could make a reasonable recovery.

The judge rejected that evidence, and declined to appoint Dr Pullicino to produce a further (full) report.  He found Dr Pullicino’s evidence “unaccountably vague”, had “severe misgivings” about its quality, and was “concerned about the level of [Dr Pullicino’s] objectivity“.  Ultimately the judge was of the view that “I do not think I can place any weight on the evidence of Dr Pullicino” (all quoted from Z v University Hospitals Plymouth NHS Trust & Ors (Rev 1) [2020] EWCOP 69). 

Supported by Christian Concern and/or the Christian Legal Centre, the ‘birth family’ then made an application to appeal to the Court of Appeal. 

The judges in the Court of Appeal dismissed their application. They said Dr Pullicino’s evidence “lacked every characteristic of credible expert evidence and it is not surprising that the Judge rejected it as effectively worthless” Lord Justice Peter Jackson). It was based on “partially informed or ill-informed opinion” (Lady Justice King) (in §21 and §31 Z v University Hospitals Plymouth NHS Trust (NO 2)).  Both judges were determined “to ensure that [the patient’s]  best interests are not prejudiced by continued unfounded challenges to lawful decisions” (§28 & §32) – and both expressed concern about the effect of Dr Pullicino’s evidence and the consequent continuing legal challenges for “[the patients’s] wife and children, who are having to endure proceedings that, coming on top of his loss from their daily lives, must be deeply distressing to them” (§28 & §29).

All these criticisms of Dr Pullicino’s evidence are in the public domain, in published judgments on public websites The judicial comments were also picked up, reported, and commented on across a range of law-related internet sites (e.g.“Judicial Criticism of an Expert Witness – Lessons Learnt”).

I contacted the General Medical Council (GMC) because it is concerned with, and offers to investigate, behaviour that might damage “the public’s confidence in doctors”.  On the basis of what I’d seen in the Court of Protection hearing and read in the published judgments and in the subsequent legal uptake of it, I believed that Dr Pullicino’s behaviour was indeed such as to damage the public’s confidence in doctors. So, I wrote a “Letter of Concern” to the General Medical Council (sent 12th April 2021).

Three long years passed.  I received occasional updates from the GMC on the basis of which it’s clear that this period of time was mostly accounted for not by active investigation but delays caused by correspondence being sent to the wrong address, waiting for transcription of court proceedings, and relevant experts being unavailable over the summer breaks.

Eventually, the GMC decided there was no need to take any action against Dr Pullicino and sent me a (redacted) “final outcome letter” dated 2nd January 2024.

In early February 2024, Christian Concern distributed their press release announcing the news of Dr Pullicino’s “vindication”  – and their version of events was uncritically reproduced in The Times.

What’s wrong with The Times?

One serious problem with effectively reproducing a campaigning group’s press release in a “paper of record” without acknowledging it as such is that it disguises the source of the story.  People are likely to understand that a press release from an organisation called “Christian Concern” will take a particular angle.  By contrast, when the same information appears under the name of Jonathan Ames, Legal Editor of The Times, it acquires the spurious and unjustified aura of objective journalism.

By obscuring the source of the (mis)information, and by publishing it in a “trusted” national newspaper under the name of their legal editor, The Times amplifies the voice of the Christian Concern campaign, and credentials it as ‘legal news’ for the ‘mainstream’ (centre-right) readership of “one of Britain’s oldest and most influential newspapers”.

It’s often said, these days, that journalists simply don’t have time to do original journalism. Journalists are working against the clock, targeted by campaign groups, and under pressure to get the stories out. They’re encouraged to focus on the accuracy of quotes they are running, but not their truth, or even their context.

“Flat Earth news has gone global” says Nick Davies because of “takeover by new corporate owners, cuts in staff coupled with increases in output, less time to find stories and less time to check them, the collapse of old supply lines, the rise of PR and wire agencies as an inherently inadequate substitute, less and less input being repackaged for more and more outlets, truth-telling collapsing into high-speed processing” (p.97)

There are very few journalists in court these days.  I’ve only ever seen a handful of journalists in attendance (and only at the Royal Courts of Justice, never in the regional courts).

Although Jonathan Ames has published several pieces for The Times about Court of Protection cases,  I’ve never seen him in court.

Mr Ames wasn’t in court for the hearing at which Dr Patrick Pullicino gave evidence – or for any of the other hearings about the patient upon whose diagnosis and prognosis Dr Pullicino gave his opinion. I watched all of them as they happened, and I read the judgments.

I’ve observed  more than 500 Court of Protection hearings since Spring 2020, when the government response to the COVID-19 pandemic led to hearings being conducted remotely – starting with the first ever all-remote hearing on 17 March 2020.  Other journalists were there – but not Jonathan Ames.  In his subsequent article reporting (in passing) on that first all-remote hearing as an instance of the “courts’ tech solution to coronavirus crisis” (9 April 2020, The Times – paywall), Jonathan Ames quotes from something I wrote – but without giving the source of his information.  The daughter of the man at the centre of that first all-remote case said it was “a second-rate hearing”: she felt deprived of her “day in court and the ability to look the judge in the eye”.  The original source for those quotations is my blog post, published on the Transparency Project website: “Remote justice: A family perspective”.  Not only was I in court for the whole three-day hearing, I also interviewed the daughter – and so it was my report on which Jonathan Ames relied.

Looking back at the “legal” articles in The Times over the last few years, I’ve found many other pieces under Jonathan Ames’ byline that depend heavily on Christian Concern press releases.

Here are two examples – both of which follow the same formula as is used in the story about the “vindication” of Dr Pullicino. Each article contains only information from the Christian Concern press release and nothing more. Each reorders and paraphrases that press release and adds a closing sentence which gestures towards an unarticulated ‘alternative’ perspective which never materialises.

  • “Nurse sues hospital over ban on wearing a cross” (5 October 2021, The Times – paywall) This is a part-verbatim, part-paraphrased and reordered version of the Christian Concern press release of 5 October 2021 with the headline, “Christian nurse takes legal action after being ‘treated like a criminal’ for wearing cross necklace”.  The only information in The Times that is not also in the press release is the last sentence: “A spokeswoman for the trust said it would not comment on active legal proceedings”. 
  • “Lecturer ‘threatened him with terrorism referral over views on homosexuality’” (24 November 2023, The Times – paywall) This is a part-verbatim, part-paraphrased and reordered version of the Christian Concern press release of 24 November 2023 with the headline,  “Christian theologian sacked for tweet on human sexuality and threatened with Counter-Terrorism referral takes legal action”. Again, the only information in The Times that is not also in the press release is the last sentence: “The college declined to comment on the legal action”. 

On receipt of a Christian Concern press release, journalists have choices.  At one end of the scale, they can dismiss it as biased campaign material and ignore it. At the other end, they can edit it straight into a story, as The Times has done.  And in between those extremes, there are legitimate journalistic options like: contacting and quoting from other groups or individuals with opposing agendas to flesh out the story, or using the press release as a hook for telling a related story, e.g., about the conduct of the GMC or the problems faced by expert witnesses in the courts, or the challenges of end-of-life decision-making.

Spin by omission

The term ‘spin’ is often used (without any necessary implication of dishonesty or manipulation) to recognise that there are different perspectives on the same story, and that a story can read very differently depending on how it is told, what information is selected for inclusion and what is left out, and how it is framed up to promote a particular interpretation for its readers.

The ‘spin’ put on these events by Christian Concern is that a blameless Catholic doctor, seeking to save the life of another human being, was targeted – first by the judiciary and then by a “campaigner for assisted suicide” (that’s me, mischaracterised!) who launched a discriminatory attack on his religious beliefs and reported him to General Medical Council.  That regulatory body then conducted an inappropriate, unnecessary and prolonged investigation into his fitness to practice before deciding there was no evidential case to answer.  From this perspective, the story underscores Christian Concern’s repeated message over the last few years that Christianity is facing marginalization and exclusion from the public sphere by an intolerant form of secularism. This is a claim identified by political scientist Steven Kettle as commonly deployed by conservative Christian groups in their attempts to influence national level policies and debates.

The Times’ reliance on the Christian Concern press release for the Pullicino story means that it too tells a narrative of Christian persecution – with the same strategic omissions as the press release.  Because the version of the press release in The Times is pared down to a quarter of its original length, some information is omitted. These additional omissions all work to my detriment.

Like Christian Concern, The Times reports that Dr Pullicino and the Christian Legal Centre “supported the family of the Polish man” (see Appendix A §8).  The piece omits to mention (presumably because the Christian Concern press release doesn’t either, so The Times didn’t know this) that there was a division within the family, who disagreed as to what the patient would want.  Although the ‘birth family’ wanted treatment to continue, the man’s wife did not. So Dr Pullicino and the Christian Legal Centre were most certainly not supporting her.

Where Christian Concern (correctly) used the word “speculated” to refer to a comment made in my complaint to the GMC, The Times transforms what I labelled in that complaint as “speculation” in to something I simply “said” as if it were my settled position.  And The Times omits (as does the press release) the very next sentence in which I dismiss as “unlikely” the notion that Dr Pullicino “may have deliberately misdiagnosed the patient in the hope of saving his life (see Appendix A §6).  My own stated view  was that “It is hard to believe that this would be the case, since this would be a gross violation of medical ethics – and  it would surely be obvious that other medical experts could easily prove him wrong” (from letter of concern to the GMC).   Omitting the context of a quotation is a familiar part of ‘spin’.

Finally, The Times (again, unlike the press release) omits any mention of the fact that a High Court judge and two Court of Appeal judges vigorously criticised Dr Pullicino’s evidence – leaving me as an apparent solo voice criticising Dr Pullicino in a legal void.  This omission renders entirely invisible the fact that it was judicial criticism, above all, that was the source of my concern and motivated me to contact the GMC.

It’s hardly surprising, then, that the story came across primarily as a narrative about my allegedly discriminatory anti-Catholic behaviour – and resulted in unpleasant “below the line” comments from people accusing me of being a “bigot”, making a “hostile” and “ideological attack” on the hapless doctor and “wasting everyone’s time”.   These people’s opinions have been manufactured by the slanted perspective of The Times article.

A plea for legal journalism

There are other ways of spinning this story which strike me as better fitted to the lofty aims of The Times as a paper of record, and to Jonathan Ames as Legal Editor.

In a democratic society, we badly need high-quality legal journalism to act as the ‘eyes and ears of the public’ in court,  to ensure that justice is not only done but seen to be done, and to support the development of legal literacy.  

One narrative The Times could have used is to highlight the failure of the General Medical Council to address what the judiciary has seen as serious problems with the way this doctor presented medical evidence in court – while continuing over the same period (much to the fury of many in the medical profession) to suspend doctors for fare-dodging or for falsely stating they’d been ‘promised” a computer.  

Dr Pullicino admitted in court that he had not read the GMC guidance on “Providing witness statements or expert evidence as part of legal proceedings” – and he self-evidently did not act in accordance with those guidelines. Yet save for a minor matter of record-keeping, the GMC did not find him have done anything wrong. 

Doctors and other medical and mental health professionals are widely used by the courts.  Judges carefully consider their evidence in making their decisions.  Justice depends on a respectful professional relationship between the judiciary and the medical profession.

Conversely, judges have recently been accused of accepting biased and controversial evidence from unregulated experts e.g. concerning parental alienation in the family courts – as in this report in the Guardian.  

The Open Justice Court of Protection Project has also published concerns about expert evidence (e.g. When Expert Evidence Fails; When P objects to an expert; Standoff about the appropriate expert: A pragmatic judicial solution). 

Judges do not have to accept the opinions of court experts, but they weigh heavily in their determination of cases.  The Court of Protection uses a very small pool of experts and I’ve observed the same names coming up over and over again.  Although the qualifications of these experts are impeccable and they almost always have extensive and up-to-date experience in the areas on which they are giving evidence, it can still be the case that another equally well-qualified expert might arrive at a different opinion.  Very occasionally there are two or more experts in court with differing opinions (for example, Cancer treatment in the face of unknowns and expert disagreement).

The use of a small pool of experts obviously limits the court’s exposure to alternative equally expert views. This criticism is currently being voiced in relation to: 

  • protected parties with anorexia refusing feeding tubes (is the single expert most frequently employed by the court ‘giving up’ on anorexics too easily when he recommends no compulsory treatment?)
  • women who may lack capacity in childbirth (do the experts advising the court have a ‘pro-life’ perspective with regard to the unborn child, since they seem invariably to recommend hospital birth, caesareans, and physical and chemical restraint to achieve this if necessary)
  • people diagnosed with ‘emotionally unstable personality disorder’ (since this is a diagnosis that is not accepted as a genuine diagnosis by some psychologists and psychiatrists). 

A substantial proportion of the cost of these experts, and the costs of the judges and legal professionals involved in commissioning and cross-examining the experts in these cases, comes out of the public purse.  We have a public interest in ensuring that money is well-spent.

Any of us could find ourselves in court with a family dispute, an incapacitated loved one, or a relative at the end of life. We depend on judges to choose appropriate experts and we depend on those experts to do their job objectively.  It’s in the public interest that any concerns about experts in court should be properly investigated by the appropriate bodies.

The GMC decision not to take any action against Dr Pullicino must be reassuring for other ‘non-mainstream’ doctors who might reasonably feel more able to become involved in withdrawal-of-treatment cases in the Court of Protection (and the family courts, where similar cases involving children are heard) without fearing for their registrations.

On the positive side, this might lead to a wider range of experts in the courts, which is something Christian Concern has lobbied for, and definitely an issue which needs to be addressed.

Less positively, it may increase the likelihood of what the judiciary has described as “... manipulative litigation tactics designed to frustrate orders that have been made after anxious consideration...”, as Lord Justice Peter Jackson said of the Christian Concern/Christian Legal Centre’s involvement in another case about life-sustaining treatment concerning a child (Indi Gregory).

The fact that the GMC complaint against Dr Pullicino is now closed with no action suggests there may be a very significant discrepancy between the expectations of the judiciary and the expectations of the GMC as regards the conduct of doctors and the use of expert evidence in the courts.

That is bad for patients, bad for doctors, and bad for justice – and it’s a story worthy of The Times.

Celia Kitzinger is co-director of the Open Justice Court of Protection Project. She has observed more than 500 hearings since May 2020 and written more than 100 blog posts. She is on LinkedIn (here), and tweets @KitzingerCelia. She can be contacted via openjustice@yahoo.com

Appendix A

The whole Times article (17 paragraphs) appears in the left-hand column. In the right-hand column I’ve reproduced the source of each paragraph from the Christian Concern press release.

Appendix B: Correction in “The Times”

“I’ve said my piece” – a social worker on long-term sick leave, a lack of communication and a frustrated judge

By Amanda Hill, formerly known as Anna 8th March 2024

I had tried to observe a hearing before District Judge Bland a few days before this one, but due to problems with technology, I hadn’t been able to, as I wrote about here. I was pleased, therefore, that I was able to observe this hearing. This was a very short hearing, only about 20 minutes long, but it shed light on some of the issues impacting the Court of Protection today: open justice, the use of technology, a system under strain, and the voice of P.

The case, COP 14141370, on 19th February 2024 before District Judge Bland, sitting in Lancaster, was listed as follows:

As it was listed as a hybrid hearing, I knew that there would be a video link, as well as an in-person hearing.  There were some problems with the listing though: two hearings were listed for 10am and the one hour hearing (the one I wanted to observe) didn’t have any descriptors to tell me what the hearing was about.

I emailed the Manchester hub, as instructed on the listing, a couple of hours before the hearing was due to start. I asked for the link to observe the hearing, the transparency order associated with it and what time the hearing would be starting. (Hearings can be deliberately listed for the same time, as Daniel Clark has written about here.)  Unlike the previous time when I hadn’t had a reply, this time I received a reply from the Administration Officer, 45 minutes before the hearing, informing me that my request had been sent to the Judge and that both hearings were currently still listed for 10am. I was sent the Transparency Order (TO) 25 minutes before the hearing, which stated that the hearing would consider ‘where P (the protected party) should reside and their care arrangements’, and ‘whether to vary or terminate a standard authorisation’. The TO also said that the hearing should be listed as ‘where P should live’ and ‘authorising a deprivation of liberty’ but that judicial instruction had not been followed: there was nothing in the list to indicate what the hearing was about.. Fifteen  minutes before the hearing was due to start, I was sent the link to join by Lancaster court staff.

I clicked to join the video-platform shortly before 11am and was held in the waiting room until just before 11.15. I was then admitted, and could see the coutroom, but almost immediately I received a message saying ‘removed from the meeting’. This gave me a dilemma  – had I been removed deliberately? I wasn’t sure what to do. After a couple of minutes hesitation, I decided to rejoin and it was just as well I did – the hearing had not started as they were waiting for me to join. (After the hearing had ended, I looked at my emails and I found one from the Court Clerk asking me to rejoin as I had ‘dropped off’ the call).

I couldn’t see the judge, as the camera was pointing into the main courtroom but somebody started speaking to me directly, calling me by name, and I worked out it was the judge. He told me that there had been a delay letting me into the hearing so that he could ask the other attendees whether anyone objected to me observing the hearing. (I don’t quite understand why that was necessary as it was listed as a public hearing.) He asked me if I was with the ‘Transparency Project’ and I replied that I was with the Open Justice Court of Protection Project. He then asked counsel for P to provide a short summary, which is best practice in accordance with guidance from the former Vice-President of the Court of Protection, Mr Justice Hayden.

I must admit that I was a bit flustered at this point due to the glitch gaining access to the hearing and I wasn’t fully able to concentrate on the summary. I have observed a few hearings now but it can still be nerve-wracking. I felt bad for having held up the hearing, even unintentionally, as I’m aware of how busy everybody is. I tried to listen to what was being said, as well as trying to figure out who everybody was. It was a hybrid hearing, and it was quite difficult to hear what was said in the courtroom clearly[1].

I could tell Counsel for P was Mel Leeming, as she had a name board in front of her. She was in the physical court room, as was P, a man sitting next to her. I gathered that this was a s.21A appeal concerning P, who was objecting to his current care arrangements. There had been a hearing on 13th November 2023 but further evidence had been deemed necessary. The case was waiting for a report from an expert, Dr O’Donovan, which was expected by 4th March 2024. There would be a review meeting once this report was received, in time for the next hearing.  It wasn’t clear to me what the report was for but I’m assuming it was to do an assessment of the capacity of P to make decisions about his care and residence, from the subject matter listed on the TO.

Ms Leeming also stated that P wanted to be able to manage his own finances, so there needed to be a capacity assessment for this as the current assessment was outdated. She stated that Dr O’Donovan would also be asked to assess that by May 2024. Ms Leeming stressed ‘P wishes to be more independent’. She mentioned a hearing on 4/6/24 and P was asking for all people to be there in person, although she recognised that this would be difficult for the local authority. The Local Authority (LA) was the London Borough of Haringey and of course the courtroom was in Lancaster, quite some distance away. I assumed that the two people I could see on camera were linked to the LA in some way. This hearing was a case management hearing.

Next to speak was Elizabeth Mottershaw, of Garden Court North Chambers, who I gathered was Counsel for the LA.  She asked for the deadline for the 4th March report to be delayed by a week, although in doing so she acknowledged that she had not had an opportunity to clear this with P’s representatives. Evidence asked for had not been provided. P’s social worker had been on long term sick leave and was only returning to work gradually. The distance between London and Cumbria where P lived made maintaining contact with P difficult. The LA apologised for the delay in providing evidence. In terms of the next hearing being in person, Ms Mottershaw suggested that an afternoon hearing would make that easier, but she hadn’t had the opportunity to seek instructions.

Having listened to both counsel, the judge then spoke. He said that he had two concerns. He was concerned about an additional week being asked for the March report when the LA had known about the requirement for a considerable amount of time. The judge thought that the report could have been done and he was concerned that more time was being asked for. In terms of the staffing issues at the Local Authority, he said that the LA should make additional adjustments to deal with that. He had some sympathy but said that the organisation should  resources to allocate a different social worker to ensure the order had been compled with. He wanted to ensure fairness and that meant the matter being dealt with expediently. He said that delays increase costs. Orders meant obligations according to Court of Protection rules, to ensure that matters are dealt with and orders complied with; it was a duty. He continued that if there were difficulties complying with the order, and those difficulties were left “to float” and the court not informed, then it complicated matters.

He said he was not singling out the social worker because social work was a “complicated job” but the court should have been informed and “should have known”. He cited a judgement by Sir James Munby (then President of the Family Division) in the Family Court  – Re W, to do with non-compliance with orders in the Family Court that had been adopted in the Court of Protection. “Orders must be applied to the letter and on time”. The judge stated that the LA should be more proactive: “Court time is valuable as you know and I am very concerned about the slippage”. He went on to say that he expected the LA to let him know because if a hearing and court time was going to be lost, it was not acceptable. He said that if he hears that the report was slipping and putting in jeopardy the next hearing, he “may ask for a statement from a senior manager” (from the LA). He continued “I’m not criticising you or the social workers who are very busy and dealing with multiple issues but I need to know about issues sooner rather than later. It is not acceptable to ignore issues. You must keep me informed of issues.” He finished by saying “I’ve said my piece”.  Ms Leeming then asked the judge whether the date in the order was to remain the same and the judge replied “ I’m not going to extend it further. The order must be complied with.” The judge then approved the draft order.

The final words of the judge were addressed to P: “Good to see you, ‘P’. I will see you next time”. After 20 minutes, the hearing was over.

Reflections

Open Justice

I was very pleased to be able to be able to observe this hearing and for a summary to be provided for me. It would have been helpful to have been told who all the people I could see either in the court room or on camera were, but at the same time the hearing had been delayed slightly for me so I can appreciate they wanted to get on with the hearing. I did try and obtain a copy of the position statements from both the OS and the LA, which would have helped my understanding. Unfortunately I couldn’t track down which chambers Mel Leeming worked for. I did send an email to ask for the LA position statement but I didn’t get a reply. Position statements really help open justice so it was a shame I was unsuccessful.

Use of technology

Hybrid hearings can be difficult as the sound can be unclear. They are practical, and indeed they provide more opportunity for observers than hearings that are only in-person, but they can lead to difficulties and I found it interesting that P had asked for an in-person hearing next time.

A system under strain

The difficulties facing local authorities, paticularly social workers, was highlighted by this hearing. I recognized this, as the social worker involved in my mum’s hearing had also gone on long term sick leave. The judge seemed particularly vexed by the lack of communication about the problems and one of the issues he raised was the increase in costs arising from delays. The judge was clearly concerned that the authority of the court was not being respected, whilst recognising how difficult things are on the ground for social workers.  I wondered how the LA could have made ‘adjustments’ to cover for the sick social worker.

The voice of P

P had made the time and effort to be in court for this short hearing, but I didn’t hear him speak. It is P who is at the heart of this case and therefore he who is most impacted by any delays. I wonder if he will get his wish to have an in-person hearing next time.

Anna was the pseudonym of a woman whose mother was a P in a Court of Protection s.21A application.  Since March 2025, Amanda Hill is allowed to reveal that she is Anna, because the Transparency Order covering her Mum’s case has been varied (changed). Amanda Hill is a PhD student at the School of Journalism, Media and Culture at Cardiff University. Her research focuses on the Court of Protection, exploring family experiences, media representations and social media activism. She is a core team member of OJCOP. She is also a daughter of a P in a Court of Protection case and has been a Litigant in Person. She is on LinkedIn (here), and also on X as (@AmandaAPHill) and on Bluesky (@AmandaAPHill.bsky.social).  

[1] It is forbidden to record any part of a hearing and I don’t touch type so my notes will not be 100% accurate.  

Life-Sustaining Treatment applications:  Hayden J confirms guidance in Re EUP

By Hita Jadeja, 7th March 2024

I am a solicitor with a background in commercial dispute resolution and inhouse advisory work.  I have developed a strong interest in the field of health and social care law, mental capacity and mental health law.  

My background in litigation is useful, but health and social care law, mental capacity and mental health law is very different to commercial law.  My interest in these areas, which includes Court of Protection, was piqued due to my experiences, both professional and personal.  Through personal reflection, I have realised that my deeper satisfaction comes from being involved in work that makes a difference to the more vulnerable in society, either through empowerment or securing their rights.  

Many years ago, one of my roles involved supporting people with mental health issues to access social care support or treatment.  I also had a family member who suffered a stroke and as a result lost capacity.  This led to a direct and active involvement in the area – which has its own legal framework and is also a complex mix of public law principles, human rights, policy, medical law and ethics which makes the field both interesting and challenging. 

Observing in the Court of Protection

I noticed a serious medical treatment case (COP 14199484 before Mr Justice Hayden) listed on the Open Justice Court of Protection (CoP) Project website on 25 January 2024.  

The website said that the case concerned a lady in her eighties who had had several strokes.  The Trust had said that clinically assisted nutrition was not an available option (but were continuing to provide hydration).  Her son (a litigant in person) had brought the case as he does not want his mother starved to death. The case had not been listed elsewhere on that day but we could email Open Justice CoP Project for access.  It was the third and final day of an ‘urgent’ hearing and the judge delivered an extempore (oral) judgment.

Previously, in December 2023 I had requested to observe a serious medical treatment case, however I was not able to for reasons I do not know.  (I received an email from a listing officer in the Royal Courts of Justice stating that my request had been sent, followed that up, but did not get a response).  So, when I read that the Open Justice CoP project had permission from the judge to share a video link to this hearing, I quickly took the opportunity to request it, and received it (from Celia Kitzinger) in good time.

The hearing was hybrid (i.e. conducted in person and via MS Teams).  I did not receive a transparency order (TO) however after the hearing, I received an email from the barrister representing the Trust, David Lawson informing observers that there was a TO in place and explaining the reporting restrictions.  I did take the opportunity to request the TO and position statement but have not received either of these.  I did not get the name of the barrister representing P (via the Official Solicitor) and as such have not requested their position statement, although I’ve subsequently been told by the Open Justice CoP Project team that this barrister was Bridget Dolan KC. 

Joining the video-platform,  I noticed about 14 people attending remotely (these were probably a mixture of public observers and people involved in or connected to the case). The lady at the centre of the case is referred to as EUP in the judgment, so that’s how I’ll refer to her here.  Mr Justice Hayden started the hearing by asking both counsel if they wished to add to their submissions.  He also addressed the son to say “I don’t think anyone could have advanced the contrary arguments to those proposed by the Trust any better than you did. Your mother would be proud of you.”  He then delivered his judgment. 

Summary of the Judgment

Note: The judgment has since been published here: GUP v EUP & Anor [2024] EWCOP 3 

EUP’s background was summarised prior to her suffering a stroke and her current long stay in hospital.  As an observer attending the last day of the hearing, this personal background helped in getting a sense of EUP. 

Briefly, we learnt that EUP is a lady in her late 80s, who settled in the UK from India with her late husband, and is a mother to 5 children.  She has been the primary carer for both her son (who suffers from mental health problems) and her late husband to varying degrees.  Her late husband developed dementia and she cared for him for as long as she could, even in the later stages when he lost the ability to swallow.  She was very hopeful for a grandchild and was delighted to have a grandson from her daughter in her mid-eighties. P was happily living with her elder son and daughter; she had mobility issues but remained cognitively strong and enjoyed gardening and cooking.  

In October 2023, EUP was admitted to hospital following a stroke.  During her stay in hospital,  she suffered mini strokes and as a result has dysphagia, aphasia, weakness in both arms and legs, and complete weakness in the right arm.  She underwent a stenting procedure of the internal carotid artery and while on ICU was intubated on a ventilator, and received medication and clinically assisted nutrition and hydration via a nasogastric tube (NGT). Unfortunately, she had also suffered further strokes.  She was discharged to the stroke ward with the NGT in place.  This was removed on 15 December as the tube had bent in the stomach.  There were several failed attempts made (for around a week) to secure the NGT with a final attempt made again on 3 January 2024, but the tube stayed in position for only 24 hours.  Hydration continued via an IV line. 

Hayden J then summarised the medical evidence that had been submitted in writing and orally in court.  In short this was: that there was a lack of change in neurological condition as EUP has suffered irrecoverable brain damage; the NGT could not be inserted reliably and repeated insertion was causing EUP distress; that there are no options for tube insertion in the stomach (a gastrostomy) because of extreme risks with insertion, risk of skin breakdown at the site, distress incurred during insertion and post insertion monitoring. These risks extend similarly to the provision of other methods of clinically assisted nutrition (PEG, RIG, total parenteral nutrition) and the assisted hydration was causing oedema. 

Any signs of consciousness from EUP were contested, infrequent and not meaningful in terms of recovery.  EUP’s daughter and son and a number of their friends had seen eye movements which were not observable before.  Whilst Hayden J, accepted that the son had questioned himself properly as to whether these changes were significant in terms of signs of recovery, by asking his friends to note any changes as a means of further confirmation, he was only prepared to accept the son’s view to the extent that EUP opening her eyes must be infrequent otherwise the nurses would have noticed it.

EUP’s son had said in court that if EUP’s current condition is all that can be achieved, she would not wish to live this way, but he wanted treatment for some weeks or months longer to see how much she could recover.  EUP’s daughter – who I have been informed by Celia Kitzinger, gave evidence in court the day before via telephone which Hayden J put on loudspeaker so everyone in court could hear it – would also wish for the CAHN to continue at least for a short time, to allow a chance of recovery.  

Mr Justice Hayden made a declaration that delivering clinically assisted hydration and nutrition, delivering antibiotics, and CPR in the event of cardiac arrest were not in EUP’s best interests. Any such treatment currently being provided may be lawfully stopped.  It was in EUP’s best interests for palliative and end of life care to be provided.

I observed towards the end of the hearing, after the judgment had been delivered, when matters pertaining to the transparency order were being discussed, My Justice Hayden, looked at P’s son and said:

“I cannot imagine how difficult this week has been for you, unbearable, and disappointed with my conclusion but I hope you will appreciate that I have listened to every piece of evidence and consider it to be the right decision for your mother.”

It was done rather spontaneously, and for me it showed real consideration for the son’s feelings.

Reflections

I’ve divided my reflections into three sections. First, I reflect on the difference between the adversarial court proceedings with which I’m more familiar, and the “inquisitorial” nature of the Court of Protection.  Second,  I consider the procedural point made by Hayden J as to who should properly have brought the application in this case. Thirdly, I have subsequently considered legal commentary about this procedural point, and summarise it in my final section.  It’s all been quite an education!

1. Adversarial v Inquisitorial Court

I was surprised that the son had pursued and continued with the application despite not having legal representation, which I thought commendable given the complexity and his situation. I have not experienced this in high court commercial litigation, and it may to some extent reflect the difference between an adversarial and an inquisitorial approach in the court. 

As I have learnt that Mr Justice Hayden asked the Trust to call evidence on the entirety of the care provided to EUP, and not just the nutrition, so in essence he decided what to investigate and how to do so.  I believe in this case it did add a layer of protection for EUP in ensuring her best interests.  For instance, he identified that delivering hydration was not in her best interests: rather it had been done, and was continuing, he said, as a compromise between the medical team and the family members’ wishes.   In an adversarial court, lawyers are generally in control of the information presented under the civil procedure rules (CPR), as judges will not enquire beyond the identified issues, facts and evidence presented in court.  Although under the same rules, judges do have case management powers to give directions on matters such as (but not limited to) setting deadlines and managing the parties’ costs to ensure cases are dealt with justly and at a propionate cost.

2. Legal Procedure 

I gained knowledge and perspective beyond the case.  It turned out to have a procedural point where there was some confusion as to who should have made the application.  Hayden J, took the opportunity when delivering his judgment to confirm his previous guidance given in 2020 – which is that the burden of making an application is upon the healthcare provider to seek endorsement of their treatment plan, when there is a best interests conflict relating to the provision of life sustaining treatment between the doctors and family members.

8. If, at the conclusion of the medical decision-making process, there remain concerns that the way forward in any case is:

(a) finely balanced, or

(b) there is a difference of medical opinion, or

(c) a lack of agreement as to a proposed course of action from those with an interest in the person’s welfare, or

(d) there is a potential conflict of interest on the part of those involved in the decision-making process

(not an exhaustive list)

Then it is highly probable that an application to the Court of Protection is appropriate. In such an event consideration must always be given as to whether an application to the Court of Protection is required.

9. Where any of the matters at paragraph 8 arise and the decision relates to the provision of life-sustaining treatment an application to the Court of Protection must be made. This is to be regarded as an inalienable facet of the individual’s rights guaranteed by the European Convention on Human Rights (‘ECHR’). For the avoidance of any doubt, this specifically includes the withdrawal or withholding of clinically assisted nutrition and hydration.

Serious Medical Treatment, Guidance [2020] EWCOP 2 (17 January 2020) (bailii.org)

Mr Justice Hayden pointed out that what he saw as the misconceived legal position in this case, left P’s son with no alternative but to pursue the application himself and to navigate the Court of Protection without experience or legal representation, causing great stress.

3. Jurisdiction of the Court of Protection – A contested opinion 

Mr Justice Hayden’s opinion that the Trust should properly have brought this case to the Court of Protection is contested.  

I am grateful to Celia Kitzinger who kindly sent me links to two blogs and a webinar in respect of this guidance.  These are:

The two blogs take competing views on the guidance issued by Mr Justice Hayden.  One accepts Hayden J’s position that the guidance should have been followed in Re GUP.  But the other (the joint blog) indicates where the powers of the CoP are limited – in particular, where a treatment option is not on the table. The authors suggest that, if the Trust were to make an application in the sort of situation that applied in Re GUP, then the Kings Bench Division (under Part 8 of the CPR) would be the appropriate forum (rather than the Court of Protection) to seek a declaration of lawfulness that a course of treatment is not appropriate.  This is on the basis that the CoP decides whether a treatment option that is available, or on the table, is in the best interests of the patient.  In this case, clinically assisted nutrition was not available, or offered – so there was no ‘best interests’ decision to make.  

In the webinar, Katherine Scott takes the view that the guidance should not have been relied upon on this case.  This is because the guidance refers to disputes about best interest decisions and not to disputes about clinical appropriateness. Her analysis is that, the stage of clinical decision making involving what treatment options are clinically appropriate (i.e. does the option provide overall clinical benefit) for the patient, and only offering those that are, is a public law decision, and therefore reviewable by way of judicial review, in the Administrative Court.  When more than one appropriate treatment option has been identified, and patients can choose between the treatment options – and in the case of a patient without capacity, decide which options are in their best interests.  It is at this stage, that the CoP has jurisdiction, and can consent or refuse on behalf of the patient.  Therefore, in her view, there is no obligation on a Trust to bring a case before the CoP for a best interests evaluation when there is only one clinically appropriate treatment option indicated, because there are no available options for the court to choose between.  

Furthermore, Katherine Scott states that the approach in this case appears in direct contradiction to that taken by the Court of Appeal in AVS v A NHS Foundation Trust & Anor [2011] EWCA Civ 7 and the Supreme Court in N v A CCG [2017] UKSC 22.  Arianna Kelly, in the webinar provides more information about these cases and other relevant case law.  Very briefly, in N v A CCG, the supreme court held that the CoP does not have quasi-judicial review powers and is limited to making decisions that P could have made for themselves if they had capacity.  In AVS v A NHS the Court of Appeal made clear that the Court of Protection does not decide on hypothetical questions, and doctors cannot be forced to give treatment.

Hita Jadeja is a solicitor with a background in commercial dispute resolution and inhouse advisory work.  

A tribute to E: How anorexia and ‘Re E’ made me a Court of Protection lawyer

By Anonymous COP Lawyer, 3rd March 2024 (with commentary from barrister Pippa Pudney – keep scrolling down)

In a recent blog post, Dr Ty Glover described his experiences working with anorexia nervosa patients, including ‘E’, whose prominent Court of Protection case in 2012 resulted in involuntary treatment being found to be in her best interests.

This interested me because I knew E.

In fact, around 2014, I developed anorexia nervosa and I was treated alongside E in an inpatient ward for nine months.

I am now a young lawyer practicing in the Court of Protection. I am writing under a pseudonym because I worry that, if other legal professionals learned that I suffered acute mental illness ten years ago, they might doubt my judgment or reliability. Concerns like these partly motivated the creation of a group called ‘Barristers with Lived Experience of Mental Illness’ (BLEMI) in which barristers can discuss their symptoms without real or perceived professional risk.

I don’t know whether my fear is well-founded. However, in the circumstances, the Open Justice Court of Protection Project has kindly permitted me to write anonymously, in a rare exception to the principle of transparency that pervades the Project.

In this blog, I first describe my time with E, then describe how E has since affected my professional life.

Reader discretion is advised, especially for those suffering from an eating disorder, because the following contains my recollections from treatment. I have withheld all information capable of rendering any person identifiable, and have not disclosed anything that E would not condone. Her story is not mine to tell, and some memories should remain ours alone. 

My time with E

I was admitted onto an inpatient eating disorders ward in January 2014. I was admitted as a ‘voluntary patient’, meaning that I was not receiving treatment compulsorily under the Mental Health Act 1983. However, I was only so classified because I was told that, if I did not consent to treatment voluntarily, it would be arranged compulsorily. 

I met a range of patients. They came from all over the United Kingdom. Almost all were women. Their ages ranged from, approximately, twenty to fifty years. Many had been receiving treatment for several years. I sometimes felt a meritocracy on the ward, whereby defying treatment was honourable, and compliance was repellent.

E never held those views. I cannot remember when exactly I first met her, but I suspect it was in the ‘ward round’ meeting the morning after my admission. These meetings were held every weekday morning, in a large room containing all available patients and staff, and were used to discuss recent ward news. 

I quickly felt that E had a benign authority on the ward. E smiled and, with kind, glittering eyes, asked each patient how they were, despite no doubt suffering the intensely negative feelings that treatment triggered in everyone. E cared visibly, sincerely and indiscriminately. 

E also interrupted other patients’ pathological behaviours. For example, during communal mealtimes, patients might save the most calorific food items until last, store them in their cheeks without swallowing and then spit them away when out of staff view. I remember, once, E noticed this was happening, ushered the patient aside and gently encouraged them to fight against their illness, both for their own sake and the sakes of their co-patients who were triggered by the behaviour. 

I keenly benefitted from E’s influence. I was the youngest patient on the ward and it was my first admission. E spent a lot of time with me, encouraging me to make this first admission my last. E explained her own clinical history as an example of what my illness could lead to if I did not resist it. 

I clearly remember, one evening, sitting with E in the patient lounge and watching the sun set. That evening, E told me about her Court of Protection case and the events preceding it. E did not seem angry about the outcome – she seemed solemnly resigned to it. When I went back to my bedroom that evening, I read the Court of Protection judgment about her.  It was the first I ever read.

As time went on, E became something between a big sister and a mother. I played my musical instrument and E would come to listen. I watched television in my bedroom and E came to join. I stood by the ward’s locked windows to watch the aeroplanes and E helped me guess where they were going. 

My circumstances changed in summer 2014. I sought premature discharge from the ward, and was instead detained there under section 2 of the Mental Health Act 1983. This made me realise that unless I worked to recover my health, I would remain an inpatient for the foreseeable future. I spoke to E about this and, citing her own history, she agreed with my analysis.

By late summer 2014, an event happened that caused me to recover. I will not describe what it was here, save to say that I realised I could not tolerate inpatient life any longer, and certainly not indefinitely. The first person I told was my own mother, and the second person was E. 

Afterward, I complied with treatment and restored the strength of my body. As I approached discharge, E told me to cut ties with all patients from the ward because – in her view – relapse would be more likely if I kept in touch with treatment-resistant anorexia nervosa patients. 

After discharge, I tried many times to contact E, but she never replied. I don’t know why. Perhaps she was putting her advice above into practice. Perhaps she is not on that ward anymore. 

How E has affected my professional life

After discharge, I returned to education. I retook A-Levels. I studied law because E’s Court of Protection case had interested me in it.

I did well, so continued studying law at undergraduate level. There, I took a module about medical law and ethics. E’s case was on my reading list. I sat in my professor’s study, and he wondered what E’s ‘autonomous’ wishes were (i.e. what E would want for her treatment, if we could silence the pathological desires of her anorexia nervosa). In this discussion I recited E’s judgment with emotion and detail. The professor looked at me strangely. I didn’t say any more. The ensuing exam went well.

I then undertook a Master’s degree in law. I studied human rights law, and again cited E’s case in my work, including the obligations that states have to save human life. Again, the ensuing exam went well. I then trained to become a barrister.

Today, I practice in the Court of Protection. This involves factual circumstances and best interests considerations analogous to E’s. I am sure that my inpatient admission and time with E determined my professional direction, as I was not interested in healthcare or law beforehand.

Perhaps more profoundly, my time with E affected how I interact with protected parties (Ps) in the Court of Protection today. E was a compassionate, tender and dignified person first, and an object of Court of Protection proceedings second. She had wishes, feelings and values that carried as much weight as yours or mine – even if, legally, they were overridden by other considerations. 

With this knowledge, I pay attention to the wishes, feelings and values of the Ps I interact with day-to-day. This does not mean sugar-coating advice, especially when Ps’ wishes, feelings and values must, in the final analysis, be overridden. Rather, it means paying attention to P’s health circumstances, communicative preferences and other factors specific to them so that, when you are interacting with P, P feels like an informed, valued and dignified actor in their own life. Such treatment does not increase the cost of advice, and it is compatible with robustly discussing and determining the issues in a case. 

Having described my time with E and how she has shaped my professional life, I close with a message to E, in case this blog finds its way to her. 

If you are reading this, E, I hope you know who I am. I want you to see how you shaped my early adulthood. I promise to try my best to help people like us. I wonder whether we will meet again. If we do, perhaps we can watch the aeroplanes and guess where they are going. 

The author is an anonymous Court of Protection lawyer.