By JH and NB (with an introduction from Celia Kitzinger), 29th January 2023
Editorial Note: The judgment has now been published: NHS Surrey Heartlands Integrated Care Board v JH  EWCOP 2
Introduction (by Celia)
There was an urgent Court of Protection hearing at the end of last year before Mr Justice Hayden. In this blog post, the person at the centre of the case (JH) describes – in his own words, as recorded by a family member- his experience of the hearing. This is a first!
The Open Justice Court of Protection Project was set up (in 2020) to support members of the public to observe hearings and to blog about their experience of the court. We’ve very occasionally published blog posts in which family members describe their experience of cases we’ve also observed (e.g. here and here). But this is the first time we’ve had the opportunity to publish an account of a hearing by the person most affected by it, the person at the very centre of the case.
It’s really important that the people most affected by the justice system are supported to speak out about their experience – and that the rest of us listen to them. It’s a vital part of open justice. But it’s new territory for us. When JH contacted me (via a family member) and offered to contribute to a blog post, I had to think carefully about the issues involved. I consulted with other members of the Project team (which includes people with personal and family experience of autism) and put out a call for input via our twitter feed (receiving more than 30 responses from Court of Protection lawyers, social workers, and others).
I have no reason to doubt that JH has capacity to decide to tell his own story in public and to give consent to publication. In the published court judgment of his case there is no finding of lack of capacity in any domain. He was found to have capacity to litigate, and did so as a Litigant in Person during a hearing of several hours.
He chose to contribute via an ‘interview’ with a family member. I was reminded (thank you Daniel Cloake aka @MouseInTheCourt) of the BBC Guidance on working with (potentially) ‘vulnerable’ contributors or anyone who might be at risk of harm as a result of contributing their story. I’ve read and discussed this guidance with NB, who is JH’s cousin and ‘interviewer’. She supported JH to tell his story, and will provide ongoing support after it is published.
After typing up his interview, NB checked it with him and I’ve seen the text message in which he confirms that he is “fine” with publication of his interview, and that he “hopes it helps someone else” to know that it is possible to stand up for one’s rights against (what he experienced as) coercive attempts to impose medical investigations that he did not want. He was also happy to contribute his story anonymously – as required by the Transparency Order, which was a relief as otherwise I’d have needed to help with an application to vary the Order.
After we’d agreed the text of his interview, NB wrote her own account of the background to the case, and I wrote the first draft of this “Introduction”, to contextualise what JH said in relation to the published judgment. Then NB read the whole thing – my introduction, her background account, and his story – out loud with JH, checked he was happy with it, and returned it to me with some suggested additions and changes, all of which I’ve incorporated. Finally, I received an audio-recorded message: “I’m just giving you my permission to publish it, and thanks for your support and help. It’s very much appreciated”. (JH also chose the illustration for this blog post from a selection of four candidate images I sent over for him to look at.)
For JH, the process of telling his story for this blog post has been (he says) “empowering”. He is rightly proud of his role in the Court of Protection proceedings and feels that the outcome of the case has enabled him to be “a free man. Vindicated!”. It’s a story he wants to tell so that other people who get caught up in disputes with health or social care teams can learn a bit more about how those disputes can be resolved in the Court of Protection – and perhaps they will be a bit less stressed and anxious by the idea of going to court when they realise from this blog post how “friendly” the judges can be. He also wants to encourage other people to make Advance Decisions: “If you don’t have one of them, you have no chance! If you do, you have some protection for yourself”.
The case of JH
The case concerned the validity of an Advance Decision made five years before. (The Mental Capacity Act 2005 deals with Advance Decisions at ss. 24-26.)
The person at the centre of the case, JH, is in his 40s and was diagnosed with what the judgment refers to as “Asperger’s Syndrome (now recognised as Autistic Spectrum Disorder)” when he was 16. He suffers from gastrointestinal pain and discomfort which has plagued him since childhood, and which now makes it difficult for him to eat. For some years he’s been consuming only Fortisip high-calorie drinks and mineral water. He now weighs around six stone (says his GP) and has multiple vitamin deficiencies. Doctors say his life is at risk.
In the past, he’s had lots of investigations, which he’s found intensely distressing, and he has consistently refused colonoscopy and gastroscopy. According to the published judgment (NHS Surrey Heartlands Integrated Care Board v JH  EWCOP 2):
“Such investigations were considered necessary and appropriate by his treating clinicians then, and by Dr W [his GP] now, to enable direct visualisation of the bowel and to allow biopsies to be taken to facilitate any diagnoses of a further range of bowel conditions that may be responsible for his symptoms. It is very clear from the evidence I have read and what from what JH has told me directly, that these extensive investigations of his childhood which necessitated such incessant hospital involvement has left him profoundly anxious and he is now entirely unprepared to attend hospital. Additionally, JH is deeply resistant to any form of invasive medical treatment.” (§2, Re JH)
I’ve been in touch with members of JH’s family since 2020, when JH’s cousin contacted me because JH was feeling “hounded” by health professionals who wanted to investigate his eating problems. I was told they had raised doubts both about his capacity to refuse those investigations and about the validity of his Advance Decision to refuse them. He was feeling “disempowered” by their “paternalistic” approach.
With JH’s knowledge and agreement, his aunt sent me a copy of his Advance Decision and details of the concerns raised by the local authority. His cousin, NB, also consulted a lawyer. Apparently, the lawyer and I gave broadly the same advice about how to make his pre-existing Advance Decision ‘watertight’. My suggestions included sorting out the date (the year was given as “20027” which doesn’t make sense) and separating out treatment refusals from broader wishes and feelings (which properly constitute an ‘advance statement’ (MCA s. 4(6)(a) rather than an Advance Decision). I also suggested adding a specific refusal of clinically assisted nutrition and hydration (a feeding tube). In my view, this was covered anyway by the refusal of “tubes inserted into my body” but I thought refusing the feeding tube should be separately listed since some people (including some doctors) don’t understand that food and water delivered through tubes is considered by law a ‘medical treatment’ (and not basic care).
These amendments were discussed with JH and he planned to make changes to his Advance Decision (or to redo it) but for various reasons – including the challenges of the COVID-19 pandemic – he didn’t actually do so. So, the Advance Decision before the judge in December 2022 was the original version.
The case finally came to court well over two years after I’d been alerted to the serious conflicts between health professionals and JH: for years there had been ongoing suggestions that he lacked capacity to make his own decisions, and might have done so when he made his (purported) Advance Decision. It seems to me that JH might have been spared a lot of distress if the case had been brought sooner, so that matters could have been resolved earlier. It seems that it finally came to court when it did because professionals thought he might die over the Christmas period and wanted to be sure that they would not be held liable for withholding the tests and treatment that JH was refusing. As the judgment says:
“…. whilst Dr W considered that it was feasible that JH had made a valid advance decision in 2017, a court determination was requested due to the stark consequences to JH if investigations leading to potential treatment did not take place, which would include his premature death.” (§2, Re JH)
Typical of Mr Justice Hayden, his judgment conveys a strong sense of the person at the centre of the case:
“Initially, I had formed the impression that JH had led something of a reclusive life, but in fact, it is clear that he sees his family his son, mother and daughter (in particular) on a very regular basis. They are all and each of them hugely important to JH. attentive, kind, loving family, who bring much warmth into his life. He is a man whose interests in nature and the outdoors can find expression even within the limited confines of his own garden. His enthusiasm for birds and nature is one which he has passed onto his son. He is a keen musician. At 12 years of age, he saved up his pocket money and bought a Fender Stratocaster American guitar. It brings obvious pleasures to JH who plays it every day. He is, from what I have been told, an accomplished guitarist. He is modest about his own accomplishment, but Dr W has told me that JH has played for him and that he considers JH plays very well indeed.” (§25, Re JH, punctuation etc as in published judgment)
The judge was very complimentary about Dr W, the GP, who has been for the last 13 years “absolutely dedicated to [JH’s] care, above and beyond professional duty or obligation”: JH and his GP have “a convivial relationship and there is obvious mutual respect” ((§4, Re JH)). He drew attention to the fact that Dr W considered that JH was likely to have had the capacity to make the Advance Decision in December 2017, and “It is important to record that a capacity assessment undertaken in 2017 also concluded that JH had capacity” (§19, Re JH).
The legal situation, as outlined in the judgment is that there is:
“… no obligation on a patient, who has decision-making capacity, to accept life-saving treatment. Doctors are not obliged to provide treatment and, perhaps more importantly, are not entitled to do so in the face of a patient’s resistance. This reflects a mature understanding of the importance of individual autonomy and respect for human dignity”. (§9, Re JH)
The judgment quotes from several earlier judgments which have established this point, including this extract:
“Even when his or her own life depends on receiving medical treatment, an adult of sound mind is entitled to refuse it” (St George’s Healthcare NHS Trust v S  Fam 26 cited at §12, Re JH)
The judgment describes the Advance Decision made by JH in 2017 as being – apart from the muddled date – “pellucidly clear” in relation to the current decision before the court concerning colonoscopy or gastroscopy. I agree!
The judge added that if the Advance Decision had not been valid (or not applicable to these investigations) and he’d been in the position of having to make a best interests decision, he “could not have contemplated a situation in which the envisaged investigations could have been forced upon him” – not least because JH had told Dr W that he would continue to refuse them, that it would need physical restraint to compel him to have them, and that he would feel “violated” by the investigations:
“The strength of his feelings, the consistency with which they have been held, for so many years, and his obvious distress at the contemplation of such an intrusive investigative process would, in my judgement, be brutally corrosive of JH’s autonomy. It would both compromise his dignity and cause him great personal trauma. It could not be reconciled with any concept of “best interests” in the manner required by the MCA.” (§23, Re JH)
There are at least two other published reports about this judgment. Legal commentator Alex Ruck Keene raises issues about retrospective ‘presumption of capacity’ (here) and journalist Brian Farmer, who attended the hearing, produced a report which appeared in the Evening Standard and the Independent (here). Neither of these reports – nor the judgment itself – tells the ‘full story’.
In what follows JH’s cousin and then JH himself tell the story of this case from their own perspectives.
1. Background to the hearing: By NB
JH is my cousin. We spent a lot of time together growing up. Family has always been really important to us. Our Grandmother ‘Nanny Mary’ was from a big Irish family and her door was always open. She looked after everyone and we all looked after each other.
In 2008 I was working for a local charity for people with profound and multiple learning disabilities. One of our trustees ran a training session on the Mental Capacity Act 2005 (MCA), he was a lawyer and had been involved in writing the Code of Practice for the MCA. I thought it was really interesting.
In 2017, JH’s Mum told me that he was being assessed by a familiar dietician and another less familiar clinician. She and he weren’t sure why – but I suggested the learning disability team might be assessing his ability to make decisions for himself. They both looked horrified and had no idea that it was a mental capacity assessment. I’d remembered enough of the training to realise this wasn’t how the MCA was supposed to work. JH has made the same decisions around his health for over 20 years, never wavered.
I contacted another lawyer trustee who put me in touch with a human rights lawyer. She suggested completing an Advance Decision and directed us towards the website ‘Compassion in Dying’ for the template. I also called their helpline for advice and spent two evenings reading the whole of the Code of Practice for the Mental Capacity Act.
Then I printed out the Advance Decision forms from Compassion in Dying and gave them to JH to read in his own time. When he was ready, I sat at the computer with JH at the end of the phone and read out the questions to him. I typed up his responses, printed them up and gave the Advance Decision to him to check through and make any amendments. He also talked through it with his Mum. I made any changes and gave them both a final copy to check. I trained as a community advocate in the 1990’s, and knew it had to be JH’s words. I informed JH that he could change the Advance Decision at any time and we could use the same process.
A school friend of mine who had known JH for many years agreed to witness his signature. She said to me at the time that she couldn’t understand why the team were questioning his capacity as she thought it was obvious that he had full capacity.
Here is a crucial part of JH’s Advance Decision. It’s also reproduced in the judgment. It shows how an Advance Decision can be used to convey a clear sense of what someone wants.
“If my health deteriorates or if I should collapse and not have capacity to make decisions:
I do not wish to attend any hospital/ medical setting.
I do not wish to have treatment which involves inserting tubes into my body, operations, x rays or MRI scans. I am willing to have bloods tests at home and to be weighed. I wish to continue with diabetic treatment and medicines around that.
I wish to have involvement with G.P, G.P practice nurses, Social Worker and Dietician but no involvement from other team members.
I do not wish to have any unannounced visits from the Dietician. If the Dietician attends, I wish for the appointment to be pre-arranged and for a family member or my advocate to be present.
I do not give permission for practitioners to be looking back through historical case notes.
I do not wish for Multi-disciplinary meetings to be carried out without my knowledge and if a meeting needs to be carried out about my care, I wish to be fully informed beforehand.
I wish to be fully informed of any discussions between practitioners about my case.
I would like to be included by telephone or if I am unable to be present or on the phone, I wish to receive an agenda beforehand and written notes to inform me what has been discussed.
I do not wish to be kept in the dark about my care or for practitioners to talk about my care without fully informing me.
I do not wish for any assessments to be carried out on me without full written information regarding the assessments.
I do not wish to discuss my history going back to my childhood treatment.
I do not wish to make on the spot decisions about my care. The best way to enable me to make a decision is to provide the information and then give me time to think about the decision when I don’t have the pressure of time restrictions”
We requested a copy of the capacity assessment from the Learning Disability team, which was never forthcoming. I was told over the phone by the dietician that the outcome of the assessment was that he did have capacity. It is our view that a lead clinician in the team who had never met JH, later questioned the Advance Decision and his capacity at the time he made it.
Over the years, more and more clinicians within the Learning Disability team became involved. They had meetings about him, without him. The more they pushed, the more JH backed off. Some of them spoke to him like a child. They didn’t listen to him. They were at his door relentlessly. He asked me to phone them to say that he hadn’t given permission for them to attend his house. I called them and they still turned up banging on his door. They asked for a key to his flat. They gained a court warrant (JH still has the copy) resulting in police officers breaking into his flat. He was out at the time and they left a note for him to contact them immediately. As soon as the police officers spoke to him face to face and saw his Advance Decision, they realised he had capacity and left.
I wish the Learning Disability team members instigating this had stopped for one minute and thought ‘how would I feel if someone treated me this way?’
It seemed as though they were looking for loopholes in the Advance Decision. Unfortunately, none of us had noticed that JH had made a mistake with writing the date.
Over time , JH put a complaint in about certain members of the team and received a written apology. He took the complaint to the LGSCO (the Local Government and Care Ombudsman). These complaints weren’t highlighted in the hearing!
At this point I connected with Celia Kitzinger and observed a couple of hearings with the support of the Open Justice Court of Protection Project. I read many of the blogs and kept a close eye on the cases which I thought might be relevant to my cousin’s case. One case gave me hope. It was a case before Mr Justice Hayden involving a young man who had been given a colostomy, despite his (unwitnessed) Advance Decision saying he wanted to refuse anything that would lead to a permanent stoma (which this had). In this case (Barnsley Hospitals NHS Foundation Trust v MSP), his family (like ours) agreed that his wishes were of utmost importance. There was another case where a ‘best interests’ decision was made not to force a feeding tube on someone, even though the young woman concerned was viewed as not having capacity to refuse it at the time: there’s a blog post about that case here: “Just listen to me please”.
As a family member, I have been appalled at the paternalistic approach of the Learning Disability team and feel that JH was dehumanised by them. At every turn I thought it would be resolved, as to us it was obvious he had capacity and what his wishes were, but they continued to chase him.
JH’s choices aren’t easy for us to accept, especially for his Mum and Dad and his children. But others controlling his life and removing his ability to choose what he does would be a thousand times worse.
He is his own person. He lives independently – near to family. He has a wicked sense of humour and he has such a blunt but lovely way of saying things. I remember when a psychiatrist (the one we suspect of having opened up questions about his lack of capacity) told him she was an expert in autism, JH replied: “So am I. I’ve had it all my life“.
So many decisions of the team were absolutely not in his best interests – in his view and in the view of the family. Maybe the Learning Disability team should have brought this to the Court of Protection years back? We were aware of their lawyers checking the Advance Decision a few years ago. Why was his case not referred then?
Now to the hearing, which JH didn’t realise was going to be a hearing until he was on the phone that morning with his Mum (my Aunt) by his side. He just thought the judge was calling to ‘meet’ him and hear his views.
He’d messaged the night before to say the judge was calling and I texted back ‘You’re amazing! You can eloquently put your point across. I have faith in you’. I imagine it was to his benefit that he had little time to stress, but that night sleep did elude him, unsurprisingly.
The next day I found out that he had represented himself in a five-hour long hearing and had won the case. He is absolutely amazing. It just goes to show what we all knew all along.
My aunt said she felt like her brain was about to explode when she realised it was an actual hearing but said she had to remain really calm on the outside for JH.
Most of the hearing is a blur to my aunt, but JH was able to recollect a lot of it and agreed for me to interview him.
I have to finally add our thoughts about his amazing GP, Dr W. This man is the epitome of care and empathy. He has empowered JH, listened to him, given him time and treated him like a fellow human being. All these things built trust and safety. JH has said he is indebted to him. When JH completely disengaged from the Learning Disability team, I suspect Dr W spent a lot of time dealing with them on JH’s behalf, and this must have been a challenge at times. He spoke up for JH at the hearing with honesty and integrity. Our family and JH himself cannot ever thank Dr W enough.
2. JH’s account of the hearing (as told to his cousin NB)
NB: What was your first point of realising the Court of Protection was going to be involved?
JH: Dr W phoned at 8:30 on Monday morning to tell me that the NHS was taking it to the Court of Protection. He apologised for the distress, worry and upset. He then arranged to come out the same day with a mountain of paperwork and explain things. Dr W said he didn’t think it would be in court until after Christmas or the New Year which would give me time to find a lawyer and he gave me a list of lawyers’ names. He marked down the recommended lawyers. So, I thought at that time I had a few weeks to get a lawyer for after Christmas.
Dr W then called again the following Sunday and said it was going to court next week and he came out Monday morning with yet more paperwork. At 5:30pm on Monday I got a phone call [we think from the NHS lawyer] demanding I get a lawyer and I was told the Judge would call me at 9am on Tuesday, the next morning. At this point we still didn’t realise that it was an actual hearing as I was told it was just a chat with the judge.
At 9am on Tuesday morning I was by the phone with my Mum. Court admin called and told us that it was a hearing, here and now, and asked where my lawyer was. I said I didn’t have one. At the time, I was on a £10 mobile from Tesco. It wasn’t fully charged and had around £10 credit on it. Court admin wanted to hold the hearing online but I am not connected to the internet, so Mum and I ended up on the phone with everyone else present in the courtroom. Dr W was also on a phone link. The phone line wasn’t that great: at times it cut out but we were able to understand the overall themes. We both took the oath before giving evidence.
NB: How did you feel at this point?
JH: I felt angry that it had been sprung upon me. But before the oath I was given the option to delay the hearing to allow me time to get a lawyer and I said I’d just about had enough, I wanted to get the decision over and done with and I still wouldn’t have had the treatment anyway. My GP spoke up for me nicely. He was very protective in his attitude towards me and manner. He did everything he could to get them to leave me alone.
NB: How did you find the experience of giving evidence.
JH: By this point I thought I’ve taken the oath and I’m going to tell the truth anyway and if people don’t like it, it’s up to them. The judge didn’t interrupt me. He gave me time to talk, time to explain things. He listened and took notice of me. He came across as very genuine and understanding of my difficulties. It felt like he was really listening to me and my voice. The judge asked me about my family, so I told him. He asked about my hobbies, so I told him about those too.
Listening to what the NHS had to say, it felt like it was all about them and what they wanted to do to me. I’ve had about ten years of bullying and harassment and being told to ‘do as you’re told’ kind of attitude. It made me feel like I was worthless and had no control over anything. Like I was a criminal and I was being punished for something. I was ducking and diving and hiding from them and going out all day to avoid them.
They said my Advance Decision might not be valid because it was from an internet service and they queried the date and thought I didn’t have capacity at the time. The judge asked how I got the Advance Decision written and who helped me. I said my cousin got it from the internet and my cousin and mum helped, and my cousin’s friend witnessed my signature. I told the judge they were all my own thoughts, wishes and words but my cousin typed it up as my writing isn’t neat.
It felt like every time I had something to say, they produced another piece of paper about me. My IQ was mentioned and all. They couldn’t find the correct documents for my diagnosis. Also, the judge said he was led to believe that I was a recluse! Not true!
The judge asked me if I wanted a summary and decision today and I said yes, today. Then, they broke for about 30 minutes and cut the phone off. They asked me to ring back but I said I didn’t have enough credit, so the court called me back and I got the judge’s summary of the evidence and the decision.
NB: And what was the decision?
The judge said that my Advance Decision was completely valid and that when I made it, I had capacity. He said (about the date) that many people make mistakes on paperwork. As far as he was concerned, what I do from this day onwards is no one else’s business but my own. The judge asked if I would like to say anything and I said, yes I would. I said, thank you for your time, your patience, for listening to me and respecting my wishes. Then it was all over. I was a free man, vindicated.
I am happy with the judge’s decision and his attitude towards me as he was really nice to me. He came across as a friend, not at all like a judge, all stiff collared!
I was pleased I represented myself as I know myself better than anyone else. I feel elated now that I never have to worry about being made to have investigations and treatments again. I hope that no one else has to go through the same harassment that I got from them, and their controlling and paternalistic attitude. I really hope this helps other people to stick up for themselves.
Celia Kitzinger is co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project. She is very grateful to NB and JH for their contributions to understanding the work of the court and the way it impacts on families.
4 thoughts on “‘Vindicated!’ The experience of P in the Court of Protection”
Thanks for posting this. Very interesting accounts of the issues involved. I hope this contributes to improved ways of thinking about how to work collaboratively.
“I do not give permission for practitioners to be looking back through historical case notes. “
“I wish to be fully informed of any discussions between practitioners about my case”
Was this agreed to by health professionals? Is it enforceable? Would make providing care very difficult..