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.