“I don’t want to be here… I want to go home”

By Catalia Griffiths, 2^nd December 2022

I am an assistant psychologist working with Older People at Bensham hospital in Gateshead. Claire Martin is my line manager. On my first induction day with Claire, she mentioned that, outside of work, she is a member of the core group of the Open Justice Court of Protection Project. I remember being amazed, thinking about how passionate she must be about promoting open justice in the Court of Protection to carve out time on her days off for it.

Since our first chat about the project, I had been looking forward to observing my first Court of Protection case. I finally got the opportunity on Monday 7^th November 2022 at 10:30am – a remote hearing before DDJ Reeder (COP 1399280T) sitting at First Avenue House.

I remember the rush of emotions waiting to receive an invitational link to the virtual courtroom. I was simultaneously nervous and excited, unable to sit still at my desk. 

The email arrived, and attached to the link was a ‘Transparency Order’ document. Unsure of what it was, I clicked the file and my stomach sunk as the realisation set in. It was a document with a set of rules that must be obeyed around observing the Court of Protection case. Any defiance meant that you may be “sent to prison, fined” or have your “assets seized”. Although I was not planning on disobeying any of the rules, the formality and the authority of the document invoked a sense of fear in me. It reminded me a lot like being in the presence of a police officer. Although you know that you are not doing anything wrong, you cannot help but feel a little bit nervous around them. 

When Claire and I were let into the virtual courtroom, we were asked to turn on our cameras and to state who we were. Judge Reeder was happy for us to sit and observe the case: he even offered us 5 minutes of his time at the end to answer any questions (which is an extremely rare occasion). 

As soon as the case began, I remember feeling overwhelmed. As there was no round of introductions. I was trying to work out who was who, whilst also listening to Judge Reeder giving a brief summary of the case. It felt like I was trying to jump onto a fast-moving train. 

From the summary given by the judge, I gathered that the protected party (referred to as “GNK”) was an inpatient with Huntington’s disease. Her case was brought to the Court of Protection because her wishes are to be discharged from the hospital and go back into the comfort of her own home. 

The case first came to court on 24^th October 2022. At that point, the judge said that she “awaited the consideration of a litigation friend. I reviewed that she lacked capacity to conduct litigation, based on [treating doctor’s] report.” The COP3 form from the Social Worker supported this view. 

The judge went on to set the context further: 

Judge: By that time an authorisation had happened regarding residence on the ward until 16th January 2023. We then constituted proceedings on the basis of Section 21a challenge – GNK said cogently “I don’t want to be here.” So, if so, when and to where? GNK said “I want to go home”. The Local Authority took the view that this wasn’t suitable, and …. discharge planning hadn’t reached a conclusion. We moved to highlighting two things – my concern that what was being talked about was a refusal by GNK to acknowledge her Huntington’s disease and a refusal to acknowledge the need for care. I asked [whether it was] lack of capacity or an unwise decision wanting to go home and look after herself. The other thing is [the] transition. I highlighted that for authority for chemical or physical restraint – I would expect the plan to detail clearly levels of escalation, triggers and the contents of each level, and the personnel involved at each level. [Then it was] relisted urgently for this hearing. 

I thought this was an important question from the judge: is GNK’s wish to move back home evidence of her making capacitous ‘unwise’ decisions or does she lack the capacity to understand, retain, weigh and communicate the relevant information in relation to this decision? The judge has requested a section 49 report from the Trust, hoping that this question will be answered. A future hearing has been arranged for the 29^th January 2022 to address the issue. 

Judge Reeder also pointed out that although the option of GNK moving back home is not yet closed off, her services do not seem to be doing everything in their power to make it a more feasible option. For instance, making sure that her home is habitable, since it has been reported that the home is “significantly hoarded” and “not safe to get into”. They are also unaware of what kind of tenancy it is or what bills need to be paid in order for GNK to move back in. Judge Reeder mentioned that it would be pointless to send her home only for it to be repossessed within a few months. I agreed with his point, and wondered why her team was not doing everything they could to explore whether they could honour her wishes. 

Whilst the possibility of GMK moving back home is properly explored, there is the possibility that she might be discharged to an interim placement. The judge spent time questioning the draft order which outlined a transition plan, should she need to move somewhere in the meantime. He was especially concerned about the triggers for escalation to different levels, given that the draft order is requesting authorisation for physical and medical restraint. 

Judge: The thing I can’t see very clearly is the triggers to move between the levels of escalation. It starts with encouragement. I am reading for the first time … it’s written in a narrative. You’ll appreciate I understand that this is on the basis that restriction is necessary but it helps me to understand how those involved with P would move between these levels of escalation. 

Louise Thomson (counsel for the Local Authority): They don’t want to use any kind of restraint. It’s hoped that verbal encouragement and reassurance will reduce the need … if she actively resists then minimum restraint will be used on her limbs and a belt in the chair. I can’t see how it will be escalated further.

Judge: I can see one starts with verbal encouragement, then escalates to ‘physical assistance’ and then it reads that this may then be followed by physical restraint. I have to say it could still be a little bit clearer. The different trigger points for escalation. I can see work has been done to address the levels – I can see the contents of each level to a degree but I can’t see the trigger points. I appreciate it’s a difficult situation but for the court to authorise it I need to see the triggers to escalate the levels. It’s where we get to ‘restraint’ or ‘further restraint’. Please give it a bit more thought to make it clear. The reason I say this is because if it’s not clear to me, it may not be clear to others on the ground. 

Coming from a support worker background, where I have had to use physical and mechanical restraints on patients, I thought this was a necessary request from the judge. Using restraint is a serious process that can have a significant impact on patients and, in some cases, can result in re-traumatisation. Due to this, it is crucial to have a clear explanation of what the draft order refers as “triggers” to escalate the levels from “encouragement and reassurance” to “physical assistance” to “further restraint”. An unclear care plan can lead to unnecessary or unsuccessful use of restraint. A clear care plan will help “others on the ground” i.e. support workers or nursing staff, to work collaboratively and efficiently, minimising inappropriate use of restraint and therefore minimising distress and injuries to both P and staff during the transition.

As the hearing went on, I remember shifting my attention to GNK. She lay there quietly on her hospital bed, and you could tell that she was listening intently to everything that was being said. I remember thinking about how she might feel about being discussed in great detail in front of numerous professionals as well as two observers that she had never set eyes on. At that moment, I felt a sense of guilt; I wondered if she was informed beforehand that we would be there, and if not, should she have been asked if she was happy with it before the hearing began. I felt like I would have been more comfortable in knowing that she was comfortable with us observing. 

Judge Reeder concluded that GNK should be discharged to a place where she can “live with comfort and where her needs can be met”. Before the final decision can be made, as well as detailed escalation triggers for physical restraint, Judge Reeder has asked GNK’s services to explore what needs to be done to consider the option of GNK moving back home, including contacting her wider family members to see if they are “willing to help with property clearance”. 

Although very patient, Judge Reeder was clear that more efforts were needed: 

Judge: It would be unfortunate that if nothing has been done, it was repossessed. What I am trying to say is that you need to tweak the order – urgent effort needs to go into contacting the landlord, finding out about the tenancy, finding out about arrears and the basis on which landlord has sought possession and whether they intend to proceed with that. It would be unfortunate if it [GNK’s home] disappears by default whilst we are dealing with case management. Please give that some thought. [Judge’s emphasis]

Judge Reeder asked to speak directly to GNK herself. 

Judge: There’s a suggestion, GNK that you and I speak in due course, prior to me making any decisions about where you should live in the longer term. Is there anything you want to say now to me now? 

GNK mentioned that she does not know what people were referring to by the condition of her flat, and that any issues with the flat was supposed to be sorted by the property owner. 

Judge: We will have a really good look at your home to see if it’s okay to go back there. This is a temporary move whilst we make decisions about going forward. 

Although it was brief, I was glad that the judge spoke directly to GNK, asking if she had anything to say to him. At first it made me wonder, with Huntington’s disease having an impact on cognitive skills, how well she was able to understand and follow the entire hearing. However, from GNK’s question about the condition of her flat, it was clear that she was at least able to grasp a rough idea of what was being discussed. I was relieved by this as I could not imagine what it would feel like to hear your name being brought up but not understand the details that were being discussed. 

Although it was a shame that we did not get to hear more about GNK as a person, I did find the case extremely interesting and exhilarating. Having worked in inpatient services, I enjoyed looking at mental capacity from another perspective. It sparked my interest in a person’s mental capacity and how such a complex concept can be assessed. It made me query the reliability of mental capacity assessments. I aim to further my knowledge on the area, and hope to observe a mental capacity assessment being completed.

Catalia Griffiths is an Assistant Psychologist, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust. She is based with Claire Martin in the Older People’s Clinical Psychology Department, Gateshead.

^{Note: Quotations are based on contemporaneous notes and are as accurate as possible but unlikely to be completely verbatim, as audio-recording is not permitted.}