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
Promoting Open Justice in the Court of Protection 
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