“An onlooker at someone else’s social event”: A mother’s experience of the court

By Anonymous, 7th June 2021

Editorial note (Celia Kitzinger):  It is a great privilege, as co-director of the Open Justice Court of Protection Project, to find that families caught up in the Court of Protection sometimes contact us  – asking whether we can arrange for someone to observe an upcoming hearing, or simply wanting to make sure their story is heard.  This blog is written by a mother who was in touch after I observed (a small part of) a hearing at which she was a litigant in person.  In conversation, I asked how the experience of being a litigant in person compared with a previous hearing, seven months earlier (November 2020) when she’d had legal representation.  She told me she had already written an account of that experience shortly after the earlier hearing. She’d circulated it among her friends, but not sent it to lawyers or to the judge.  When I read it, I was very troubled by how alienated she felt from the whole hearing, and how  – despite having legal representation – she had understood very little about what was going on. I asked for permission to publish it (lightly edited to maintain confidentiality in line with the requirements of the transparency order, and with a new opening paragraph) because her account bears witness to some of the challenges the court poses for families of protected parties.  The subsequent hearing,  in May 2021, was a hybrid hearing at which there were several public observers, including Katharine Shipley who wrote a blog about it, including what this mother told me about her experience of that later hearing.

This is a factual account of my experience of the Court of Protection in November 2020 as it was for me. Being involved in court is very strange – nothing like this has happened before.  I gave up work when I had my children but I trained as a nursery nurse and worked in a children’s home for a time. 

I have written this anonymously because I have a transparency order saying I cannot write under my name – although I have no secrets and nothing to hide, and my daughter is unaware and cannot be hurt by publicity.  I would prefer to use my own name, and my daughter’s name, but I cannot.  To learn that a ‘transparency  order’ actually  means enforced lack of transparency is preposterous.  

It was the second hearing about my daughter, Lillian (not her real name) who has profound learning disabilities.  She was taken into temporary respite care in 2017 when I had to be admitted to hospital, but has not been allowed to return home – for nearly three years at the time of this hearing.  So I applied to the Court of Protection to try to get her back home.

The first hearing was in 2019. On that occasion I sat alone all day with my solicitor in a waiting area.  The lady barrister I had then kept coming back and forth across a crowded area to see me.  Then we were shown into court for about 10-15 minutes or so in the afternoon and my barrister stood up and gave a few people’s names –  after which we all left the court and went home.  There was a group of strangers in court who I did not know. I did not understand what was happening then, and I do not understand what was happening at the next hearing, a year later (or why there had to be two hearings). 

The November 2020 hearing was supposed to be over three-days, but only the first day happened. I found the whole experience to be very unsettling. I am deliberately not making criticism or expressing opinions about what happened,  as I have never been to court before they took Lillian,  and so have nothing to compare it with. Was my experience unusual? I don’t know. 

I did rather feel that I was an onlooker at someone else’s social event – but maybe that it always how it is.  

Meeting my legal aid barrister

I was asked to arrive in the court building for 10.00am to meet the barrister who was representing me.   We had once spoken by telephone some months ago and he was a different barrister from the one in 2019.  My original solicitor had left the practice and was replaced by another who did not attend the court.  

I arrived at 9.30 and was shown to a waiting area.  He came straight to me when he arrived, and we went to a side room with a large window and light blinds for some privacy.  He shut the door for the same reason.  We agreed to take off our masks and sit at distant ends of a long table.  The barrister was actually extremely pleasant to me and seemed to be very supportive of me.  He asked me  some questions he wished to clarify about Lillian.

Other people were coming and going outside the window all day long and soon there was a tap on the door, he stood up to open it, put his mask on, and spoke to them.  Some people went into the adjoining room beside us.  They were part of our court hearing.  We continued to talk about the issues concerning Lillian and more interruptions followed.  Every time he had to grab and use his mask, stand up and open the door.  Sometimes he went out into the waiting area to talk.  

Gradually he was gone for longer periods and was out of sight of the window.  One time he came back and said he had met the judge and was very impressed by his attitude to our case.  I had the impression there had been a meeting of several of them.  

Two ladies came to the door to see me one time when he returned and he told me they were acting for Lillian.  

My barrister started to give me advice about issues to do with the court case and the way he felt the judge would be thinking.  He was persuading me to accept certain matters in order to make progress.  I believe he was spending time in the adjoining room with Lillian’s legal team, and he was telling me that they were willing to be accommodating.  At one point he was telling me how greatly impressed he was with the judge and the way the judge was thinking.  I am not sure exactly when that was as the barrister was leaping up, down and leaving so often.  I just sat there.

At one point he said we were due in court at 1.00pm.

Nearing 1.00pm he said that he was desperate for a sandwich as he had been up since 6.00am and asked if he could get me anything.  I said no thank you and he dashed off. I have no idea where he had to go for that.  Not seeing the sandwich being eaten I don’t know if he ever got one; but I became aware that he might be in the room next door with the other legal team. It was well after 1.00pm when he came back to talk to me.  Then another call at the door and this time he seemed to be called urgently and rushed off.  

He was gone for quite a while and when he came back, he was telling me the judge wanted to make plans about me visiting Lillian and arrangements were being made between everybody, and there would be another hearing.  

I asked when we would be going into court and he told me that it had happened and was all over.  I was shocked.

Afterwards

He then asked if I wanted to talk to the care manager of my daughter’s care home. I don’t know what she was doing there or what she was doing in court. I did not, but I said yes.  She very smoothly talked at length about my concerns and how they wanted to deal with my concerns and how they understood my concerns. No mention of Lillian.  I stayed silent.  I don’t need to be told about my concerns.  When she stopped, she asked me ‘did I have any thoughts?’  I just looked at her.  As she waited, I said ‘I am here for a court hearing, not for having any thoughts.’  Then I told her that she needed to sort out Lillian’s spectacles and her long delayed blood test.  I told her I expect those two demands should be met.  Then she left the room.

Towards 4.00pm my barrister asked me if I would like to go home.  Surprised I said that surely, I was expected to stay all the time?  He told me they were waiting for ‘the court’ to tell what would happen tomorrow and they were preparing documents.  I asked what he meant about tomorrow.  He said that the court case was all over and I may not have to attend the next day. On that day one of my care assistants was meant to attend the court and had been in contact with the solicitor.  I asked what about her and he said that she probably would not be required.  I was stunned and said I must text her right away because she had taken a day’s leave to attend and would be preparing.  I did so in front of him.  

He spent some more time in the other room then came to tell me all was finished; I would not be attending the next day and they were waiting for a document and then some printing.  He started to pack his bag, showed me the confusing way out of the building and then ran to get his train.

I had sat on that chair from 10.30am until 4.30pm and had not even stood up in that time!  

I don’t understand what was decided at the hearing.  I did not get anything like a bit of paper saying “This is what was decided at your court hearing”.  I don’t understand why there is another hearing planned for next year.  Throughout these months  between now and the next hearing my belief is that Lillian is not being given the care that she needs and is not being protected. I just want my daughter to come home.

Concluding Note (Celia Kitzinger)

After reading this account of the earlier hearing, I looked through the court documents to which I’d been given access (as an observer at the May 2021 hearing) to see if I could learn more about what happened. I discovered an account in the Position Statement provided by the CCG for the hearing on 10-12 May 2021.  Lillian’s mother had also been provided with this Position Statement as part of the whole court Bundle which she was sent as a litigant in person – but of course this constitutes an overwhelming amount of paperwork in complex legal language. Here’s what it says:

The Official Solicitor’s statement for the May 2021 hearing adds the following concerning the November 2020 hearing:

I have shared this account of what happened that day with Lillian’s mother. She wrote back:

“The barrister did tell me the general idea that the judge presumed that visits to my daughter by me would be automatically of value. But that was when I presumed we had not yet been ‘in court,’ and I would be able to answer and explain to the judge why such theories may not apply to her.  Even then the barrister was also bouncing between the rooms and the other lawyers etc. so there was no real conversation.  And that still ignores the basic fact that decisions were being made by outsiders without listening to and questioning me as Lillian’s mother.”

It is easy, in my experience for lawyers to over-estimate how much members of the public understand of what is happening in court about matters that intimately concern them and their families. The language and processes are part of lawyers’ everyday work but alien to the rest of us – and can be especially hard to make sense of when we are anxious and under stress.

To find out what happened at the third and final hearing, read the blog post by Katharine Shipley.

Photo by Sam Moqadam on Unsplash

My midwife heart weeps: Opinion on a court-ordered hospital birth

By Kathryn Gutteridge, 4th June 2021

For a moment I thought I was reading about a maternity case that occurred last century or certainly in some far-away country where women’s rights are not acknowledged.  But no, it is England in 2021.  It was not so far a departure from the Handmaid’s Tale and that era of womanhood is long gone – or is it?

I am writing this as a midwife of many years and as an experienced psychotherapist who has worked within the NHS maternity services all of my long career. I am also the founder of SANCTUM Midwives, a pregnancy care centre that supports, educates and campaigns in respect of women who have experienced sexual abuse in their lifetime. 

Over the course of my professional career, I have seen and implemented the development of sensitive and woman-focused pathways and guidance that has recognised that personalised care is the optimum model for childbearing. Many years ago, I witnessed liberal use of sedatives in childbirth and practices that were crude and by and large unevidenced.  I hardly thought that I would see the use of brute force lawfully sanctioned to compel this woman (and, previously, in a very similar case, the woman in a Court of Protection hearing in March 2021) to experience treatment determined for them, and not by them.

Judging whether someone has ‘capacity’ to make decisions is burdened with bias.  In my practice and experience,  mental capacity is ever-changing and not knowing either of these women I make no judgement about the assessment and finding of lack of capacity.  However, the basic principles of the Mental Capacity Act 2005 are clear.

I am somewhat concerned that both these women may have been assessed as lacking capacity to fit the predetermined desired outcome of bringing them into hospital against their will.

Reading the judgment from Mr Justice Holman, I was angry beyond words.  It should never have been brought to a court of law.  In my experience and that of many Perinatal Mental Health Midwives (who’ve described their experience in another blog here),  women who present with a range of anxiety-based disorders are best cared for in a relationship-based model of care, which incidentally these midwives are skilled to offer. In abundance.  

This anxiety-based diagnosis is manageable by therapy and sometimes medication to control the anxiety triggers. I know I have worked with many women with these kinds of diagnoses.  I could not find in the judgment any recommendation of therapy for this woman apart from prescribing a strong sedative (Lorazepam 2mgs) prior to leaving home in suspected labour.  There is no record here either of the benefit of a trusting relationship with her midwife as recognised in the National Maternity Review,  Better Births.

Home birth today is an established and safe option for women who are pregnant – it’s even, in some cases, the most appropriate place for birth to occur.  I note that two medical professionals gave expert opinion to the judiciary:  Professor James Walker (retired obstetrician) and Dr Glover (a psychiatrist instructed by the Official Solicitor, acting for the pregnant woman).  Where is the expert opinion from a midwife?  I assume in delivery of antenatal care thus far a midwife or midwives have visited the home to establish antenatal care and to assess maternal and fetal wellbeing.  Surely the opinion of an experienced midwife in this field could have given some weight to the argument for a home birth or at least some decision about an alternative place to birth such as a midwifery unit within the hospital.  In my practice this has usually been a realistic and safe option where women have requested alternative place of birth.  Surely this would have given this women a less stressful environment where her labours would have been supported by midwives skilled in this area of care.

This is patriarchal medicine and law at its worst and in complete collusion with each other This woman has  been subjected to compulsory (sedated) attendance in hospital in the name of maternity care.  A concern with the foetus’s well-being (despite the fact that the foetus has no rights until born within our legal system) seems to have surreptitiously influenced the judge’s decision  in this case. 

What the judge has done here is to create a precedent that any woman who has an anxiety disorder and requests birth outside of the regular menu of choice may be subjected to strong-arm maternity care – or may fear it, even if in fact the legal process is never instituted.  For many women the impact of these experiences during their pregnancy care and birth will cause deep and long-standing trauma.  Obstetric violence is a familiar term to me and I am careful in my use of this phrase.  However, I cannot think of a better description to illustrate what has happened here in the UK in 2021. 

 It fills me with deep sadness that these cases have been dealt with in this way, when a gentle and knowledgeable midwife, skilled in relationship-based care,  might have achieved a different outcome.   

Instead, we have birth by court-order and the annihilation of vulnerable women’s childbearing rights.  

My midwife heart weeps.

Dr Kathryn Gutteridge is a Consultant Midwife & Clinical Psychotherapist. This opinion piece reflects her own views in her capacity as a midwife. She tweets @Sanctummid

Image by Steve Johnson on Unsplash

“Not nothing”? The Late Term Foetus in the Court of Protection

By Mary Neal, 3rd June 2021

‘Whatever else it may be a 36-week foetus is not nothing: if viable it is not lifeless and it is certainly human.’ (St George’s NHS Healthcare Trust v S [1998] 3 WLR 936 at 957 per Judge LJ.)

Introduction

In the recent case of A NHS Foundation Trust v An Expectant Mother [2021] EWCOP 33 (hereafter, ‘An Expectant Mother’), the Court of Protection (COP) was asked to give authority for a pregnant woman with severe (‘longstanding and deep seated’) agoraphobia to be transported to hospital for a planned delivery (using restraint if need be), notwithstanding her stated wish for a vaginal birth at home. As is now well-known, Holman J made the requested declaration, having determined that the woman lacked capacity to refuse because her agoraphobia prevented her from weighing relevant information and using it to reach a decision. As is also now known, the woman subsequently travelled to hospital without the need for restraint, and her healthy baby boy was born there, apparently naturally.

There have been numerous responses to the case published on the Open Justice Court of Protection blog (and elsewhere), written from a range of perspectives and focusing on the case’s central themes: mental capacity; best interests; phobias; paternalism and compulsion around childbirth (‘obstetric violence’). In this comment, I take the case as a starting point for reflecting on the COP’s engagement with the late-term foetus.

The status of the foetus in UK medical law 

It is well-established in UK law that the foetus – at any stage of gestation – is not a legal person, nor a locus of independent justiciable rights or interests. As Sir George Baker noted in Paton v British Pregnancy Advisory Service Trustees [1979] QB 276, ‘[t]he foetus cannot, in English law, in my view, have a right of its own at least until it is born and has a separate existence from its mother. That permeates the whole of the civil law of this country.’

This position has been reaffirmed in medical law cases involving the right to refuse a c-section. In MB (An Adult: Medical Treatment) [1997] EWCA Civ 3093, Butler-Sloss LJ noted that ‘[t]he foetus up to the moment of birth does not have any separate interests capable of being taken into account when a court has to consider an application for a declaration in respect of a caesarean section operation.’ (para. 60, emphasis added)

This was echoed the following year in St George’s NHS Healthcare Trust v S [1998] 3 WLR 936, with Judge LJ observing that ‘while pregnancy increases the personal responsibilities of a woman it does not diminish her entitlement to decide whether or not to undergo medical treatment…Her right is not reduced or diminished merely because her decision to exercise it may appear morally repugnant.’ (para. 957)

Judge LJ was clear that ‘the perceived needs of the foetus did not provide the necessary justification’ for overriding S’s capacitous refusal to consent to a caesarean. 

Court of Protection jurisprudence

The principle that the foetus has no separate legal existence applies equally, and has been reaffirmed repeatedly, in the COP (see, for example, Guys and St Thomas’ NHS Foundation Trust v R [2020] EWCOP 4; The Mental Health Trust and Anor v DD [2014] EWCOP 11). In the COP, however, medical treatment cases involve assessing the best interests of the party (P) whose capacity is in question, and where that party is pregnant, ‘the delivery of her healthy unborn baby will be an intrinsic factor’ in the best interests assessment (Guys and St Thomas’ NHS Foundation Trust v R [2020] EWCOP 4 at para. 62, per Hayden J.)

The health and safety of the foetus merits consideration in these COP cases, then, albeit indirectly, and Holman J did consider it in An Expectant Mother:

Using a BAILII database search, I found 14 reports of COP cases involving requests to authorise birth plans (most involved authorising c-section). In all 14, the authorisation was granted. In eight (including An Expectant Mother, which authorised transportation to hospital but acknowledged that P retained capacity to consent to or to refuse c-section), P’s known or presumed wish for the child to be delivered safely was cited as a factor in P’s best interests. In all 14 cases, however, what was authorised was also deemed necessary for P’s own safety, meaning that the wellbeing of the foetus was never the deciding factor.

Logically, for foetal wellbeing to figure at all, it must be possible to know or presume that the foetus is positively valued by P. Hayden J is undoubtedly correct in his carefully-worded observation that ‘it will rarely be the case…that P’s best interests will be promoted by permitting the death of, or brain injury to, an otherwise viable and healthy foetus.’ (Guys and St Thomas’ NHS Foundation Trust v R [2020] EWCOP 4 at 63) Nevertheless, it is possible to imagine a case in which evidence of P’s attitude to the pregnancy would make any consideration of foetal wellbeing under the auspices of P’s best interests, in Alex Ruck-Keene’s phrase, ‘a misleading legal fiction’.

It is interesting to reflect on what would happen if the Court were asked to authorise a birth plan in a case where the risk of not doing so was primarily to the foetus, not to P, and there was evidence of the latter’s indifference or hostility to the former (e.g. an attitude like that of S in the St George’s case, who had said that in her view ‘it would be better for the baby to be dead’). Hayden J has expressed the view that, although a capacitous patient may exercise her autonomy in a way that ‘jeopardise[s] the life and welfare of her foetus’, the COP does not have ‘the same latitude’ to do so when it is the decision-maker. Again, however, this was said in the context of foetal wellbeing fitting within the rubric of P’s best interests. What might happen when the evidence does not support this, or even seems to contradict it? 

Among the COP cases I found, there are a few in which P’s attitude to the foetus appears ambivalent, or cannot be gleaned from the text of the judgment (often, in these cases, P is seriously mentally ill or has serious learning disabilities – see, e.g., A London NHS Trust v KB & Anor [2020] EWCOP 59; NHS Trust v JP [2019] EWCOP 23; Re CA (Natural Delivery or Caesarean Section) [2016] EWCOP 51; Royal Free NHS Foundation Trust v AB [2014] EWCOP 50). In these cases, judges tend to make no mention of the significance of foetal wellbeing for P’s best interests. The case that seems to come closest to Ruck-Keene’s ‘legal fiction’ is the case of The Mental Health Trust and Anor v DD [2014] EWCOP 11. In that case Cobb J noted, citing MB, that ‘[it] must be in the best interests of any woman carrying a full-term child whom she wants to be born alive and healthy that such a result should if possible be achieved’ and that accordingly ‘it is plainly in DD’s best interests (both physically and mentally) that her baby is born alive, healthy and safely’ (para. 97) However, I was unable to find any evidence in the case report that DD – who had ‘an extraordinary and complex obstetric history’ (five previous pregnancies with numerous complications, and five children permanently removed from her care) did actively want her child to be born alive and healthy. Unless there is additional evidence not presented in the text of the decision, this seems like a case where the presumption is doing a lot of work.

Conclusion

The right of a capacitous pregnant person to make their own medical decisions unfettered by any consideration for the life or health of the foetus they carry has been enshrined unequivocally in UK law. As Judge LJ emphasised in the Court of Appeal in St George’s NHS Trust v S, pregnancy does not reduce a competent patient’s right to make decisions about their medical treatment, and a capacitous pregnant patient therefore has the right to make a medical decision that might cause death or serious injury to the foetus, however repugnant such a decision might seem to onlookers. It was held in St George’s that S – who professed to be indifferent to the wellbeing and fate of her late term foetus – ought to have been allowed to make such a decision. Arguably, however, it is easy to say this in retrospect, and the real test of the principle would be a judge delivering a prospective judgment that enabled a pregnant person to decide in such a way. 

The foetus’s lack of separate interests or rights, even in the very latest stages of pregnancy, has also been repeatedly affirmed in the recent jurisprudence of the COP. However, when a pregnant patient lacks capacity, and a ‘best interests’ assessment is being undertaken, the default position seems to be that P’s best interests will almost always be served by protecting the life and health of the foetus (where this does not risk P’s own life or physical health). 

As such, the foetus of a pregnant person who lacks capacity might be said to enjoy a kind of legal status, not as anything of value in its own right, but insofar as it is known, or presumed, to matter to P. As a valued child-to-be, it wins a place in the consideration of P’s own best interests, despite lacking any legal interests of its own.  

Nevertheless, as far as the law is concerned, the late term foetus is – despite Lord Judge’s famous dictum – ‘nothing’ meriting consideration in itself, and it remains to be seen what the result would be if a case came before the COP in which there was evidence that, rather than positively valuing the late-term foetus, P was indifferent or even hostile to it. Presumably, the right legal approach in such a situation would be to disregard the health and safety of the late-term foetus, perhaps obliging a judge, in Alex Ruck-Keene’s words, to ‘endorse a plan which could lead to the death of a viable baby’. To navigate such a case would surely prove very challenging, even for a court as expert in making best interests assessments as the COP. 

Mary Neal is Reader in Law at the University of Strathclyde. She tweets @maryfordneal

Image by Heather Mount at Unsplash

“I have agoraphobia and I had a home birth”

By Michelle Bromley-Hesketh, 28th May 2021

Editorial note (Celia Kitzinger):  I contacted Michelle Bromley-Hesketh after she posted several tweets about the judgment by Holman J, as reported in the press and covered by my blog post.  She said it made her “very angry”, and she was concerned that pregnant women reading about the case – especially those with mental illnesses – would fear being coerced into hospital. 

She also tweeted about her own experience.

So, I asked Michelle – who is now a doula and counsellor/psychotherapist – to describe her own experience of choosing a home birth in the context of agoraphobia.  Her youngest son was born at home  in April 2013.  This is her story.  Michelle hopes it will inspire other women with mental illness to know that a home birth is possible – and that it can be (as it was for her) an empowering and healing experience.  

—————————————————————————————————————–

My most important message is this:  It’s possible to be agoraphobic (or to have a mental illness of another kind) and still have capacity to make your own decisions about how you want to give birth.  You can still choose a home birth – and it can be wonderful.  I know, because I did this.  

I have had agoraphobia since the birth of my first child, in hospital in 2005, when I had severe post-natal depression and developed a fear of hospitals.  I can now actually go into hospitals if it’s for treatment for my children, or other people, but when it’s for me I get all the symptoms – panic, heart racing, sweaty, breathing difficulties. In an emergency situation I will be okay, but planned trips for my care can fill me with dread. But even at the height of my agoraphobia, emergency situations wouldn’t faze me. 

I wanted to have my second child (in 2007) at home but at that time I believed (without looking at the research) that hospital was safer.  She was born really quickly and I had a sense of  holding the baby in to get to hospital in time to give birth there, and then her shoulders got stuck and had to be freed.  I just thought, “I don’t want to do that again!”.  It was a huge amount of anxiety.

My third  pregnancy in 2013 was a complete shock. I thought my family was complete with the two children I already had. I was in a new relationship and we definitely were not planning to have any children between us.  By this time, I had begun training as a doula and I knew that home birth could be safe.  I’d done my research and I knew I wanted to birth at home.

I was told that medically it “wasn’t advisable” – partly because I’d refused a lot of antenatal care during pregnancy and I hadn’t had any blood tests except for one finger-prick iron test.  I got some very good therapy during pregnancy that enabled me to have that one blood test.

I also went to 43 weeks (by my dates) – but the scan from the hospital put my dates back 2 whole weeks, which gave me breathing time for NHS induction protocol to kick in.  By their dates, I went into labour at 41 weeks.  I wasn’t worried.  I knew what I was doing.

There was a large element of agoraphobia in my decision to give birth at home, but I am confident that I’d have gone into hospital if there had been an emergency.

I definitely feel I had the mental capacity to make the decision to have a home birth.  When I was preparing for this home birth, I read lots of information and weighed up the pros and cons of home versus hospital, taking into account all the relevant factors, but especially considering that home birth would be safe, that I could transfer in an emergency, and that my agoraphobia and fear of hospitals would mean that home birth would be a much better experience for me.  I didn’t want the trauma and the panic.  A big driver for deciding on a home birth was that I would feel that I was in a safe space, that I would be the person in control: midwives would be guests coming into my space where I hold the power.  

My decision to give birth at home was far more informed and considered than my earlier decisions to give birth in hospital were.  Back then I didn’t really weigh up any information about home vs. hospital – I just assumed that hospital was safer.  It was an uninformed choice: I was going along with what was expected.

I did experience some degree of coercion with my home birth.  I was told that I would die or my baby would die – and that’s very scary, especially if you’re already fearful and anxious.  Some people treated me like a naughty child.  Others treated me as if I had three heads.

The birth

The birth was a healing experience. I trusted myself and my body more than I’ve ever done before or since. 

The midwife, Lynn, introduced herself, asked questions about what I wanted to happen and worked with me beautifully.  We called my parents to come and keep an eye on the older two children,  so we could concentrate on me and the new baby.

I had a birthing  pool (it took my partner 2 hours to fill it up) but thought, ” hmm I feel comfy enough doing what I’m doing” and the thought of getting a contraction with one leg in one leg out put me off so I decided to not get in. 

Much of my labour I was on my knees on the settee with my face planted into a pillow on the back of the settee, with my partner rubbing my back.  My mum just sat quietly watching in the corner, which felt empowering. She seemed calm and just a “mother/ women” energy. Something quite ancient and primal. She has since said that it was an empowering experience for her too.

I began howling and growling, swore a little too, but was inward and imagining thing moving and opening. My dad, who was upstairs throughout, said my sounds were very different to those my mum made and were very animalistic and primal.

My baby descended. I hardly pushed. Waters now popped. (First time this has happened naturally in my births). I had a panicky moment which I think was me actually realising I was having a baby in next minute and requested gas and air for the first time. The midwife went to retrieve it from her car. I had one slight puff, which was definitely a psychological thing and my  baby came out!  I felt the familiar “flop” feeling and he’d landed on the settee – at 4:13am on 23rd April 2013 weighing 8lb 9oz (he wasn’t weighed until an hour later).  I turned over and picked him up and immediately he reached for the breast and we stayed there for ages!  The moment felt wonderful and magical and very healing and cleansing even though I had NO idea I needed healing/cleansing. Wonderful!

I will never forget the experience. Amazing, magical, wonderful. I truly felt like a goddess for months afterwards. The high wouldn’t leave and when I think about it, I still smile and feel all tingly!

Reflections 

It’s hard to make decisions that other people think are “unwise” – especially then they threaten you with death and serious injury.  But I have learnt so much more about childbirth since my hospital births, and it was this knowledge that supported me in making my choices.  Knowledge really is power!

Although my baby breastfed immediately after birth, he didn’t feed again for more than 14 hours.  I myself had no concerns – he was full of mucus and just needed some time.  But the midwives wanted me to go into hospital to get him examined.  I said “You want me to go to hospital with my 14-hour old baby?  Dream on!” They said I was putting my baby at risk.  They said they might need to ring social services and get the duty social worker to come if I refused to go to hospital.  Then the GP turned up – but by the time they showed him into the house I had my baby feeding at my breast.  If I hadn’t been knowledgeable, at that point I’d have been whisked into hospital for no reason.  

On my medical records on the computer, when the GP opens them, there’s a red flag that says “history of Severe Mental Illness” – that’s my depression, anxiety and agoraphobia.  That makes health professionals feel concerned and then they try to control what you do.

I still believe I could have coped with an emergency transfer, because I would have accepted the need for it.  But to be forced into hospital by punitive people who think they know better than me, without any emergency, before I was even in labour – that would have been awful.

If anyone had insisted that I must give birth in hospital and be admitted before my due date  – as happened to the poor woman in the court case recently – I think I would have run away.  I would have not told anyone when I went into labour. I would have given birth on my own without any health care professionals in attendance, rather than be forced into hospital – and of course that’s much more dangerous than a planned home birth with midwives.  The only way they could have got me into hospital would have been to sedate me and force me.  My phobias and panic would have been through the roof and the whole experience would have had  a long-term negative impact on me as a woman and mother and would have exaggerated my agoraphobia.

I know that a lot of women will be scared and anxious by the media reports of this case.  I want to reach out to them and say that having agoraphobia, or tokophobia, or any other kind of mental illness, doesn’t automatically strip you of the right to make your own choices.  They have to prove that you lack capacity to make your own decisions about childbirth – they can’t just assume it because of your diagnosis.  

There is support out there if you need it from the childbirth organisations (listed below) who understand the importance of listening to women and empowering them to give birth in the way that is best for them.

Michelle Bromley-Hesketh is founder of Snowdrop Doula Community Interest Company, a mother of three, a doula and counsellor/psychotherapist.  Michelle’s interests and expertise are in perinatal mental health, trauma and complex needs, and informed choice. She tweets @michellebee34. 

Other organisations that can help

Association for Improvements in the Maternity Services (AIMS)

Birthrights

National Childbirth Trust

Image credit: Jodi Hall Photography

Re: An Expectant Mother [2021] EWCOP 33: A lawyer’s perspective

By Victoria Butler-Cole, 27th May 2021

The essential factors in the approach of the court to applications concerning birth decisions are well established.  Does the (expectant) mother lack capacity to make a particular decision for herself by reason of a mental impairment or mental disorder?  If she does, which of the arrangements on offer is in her best interests and should be consented to by the court on her behalf?  If the proposed arrangements include the use of force, is that necessary and proportionate?  

In this case, the mother had been diagnosed with agoraphobia, and the consensus view of the psychiatrists involved was that this caused her to be unable to make a decision about whether to have her baby at home or in hospital.  She had been unable to leave her home for ‘several years’ other than on a ‘very small handful of occasions’, as this caused her ‘overwhelming sensations of anxiety, shortness of breath, dizziness and palpitations’.  She was also said to have short-term memory problems, although the cause of these was not identified. 

We can see from the order made in the case, that the particular decisions that the mother was unable to make were ‘decisions about the location of the delivery of her baby’.  She was said to be unable to weigh and process relevant considerations as a result of being overwhelmed by her agoraphobia.  These considerations are not identified in the judgment – one assumes the analysis was that she was not able to weigh the objective benefits of delivery in hospital as against delivery at home, because she viewed going to hospital as out of the question and could not consider it at all.

The formulation of the decision she lacked capacity to make is important: she was not found to lack capacity to decide on the mode of delivery, only the location. This is perhaps a difficult distinction to draw, since an elective c-section could only take place in hospital, and a home birth could only take place at home.  The order envisaged that she would be able to choose, once in hospital, between induction of labour or an “elective” c-section.  (This is a little puzzling, since one would think that such a decision ought to be made in advance, the mother’s mental capacity being likely to be most impaired on arrival at hospital having been taken there against her wishes or with the use of force.) The finding that the mother lacked capacity to decide about the location of delivery leached into her apparent capacity to decide about the mode of delivery. 

The decision on best interests turned on the evidence of health professionals about the risk to the mother of going into labour at home and then requiring admission to hospital.  This was said to occur in about 45% of similar cases, of which about 10% were admissions for urgent medical emergencies. In about 1-2%, these would be ‘urgent blue light ambulance transfers’.  Further, the court was informed that home births resulted in 1 in 100 still births or ‘otherwise seriously damaged’ babies, compared to 1 in 200 hospital births. The judgment does not say whether these figures relate to healthy 21-year-old first time mothers like the mother in this case, or whether they concern all births.  The difference in risk is said to be ‘largely attributable to delays in effecting a transfer from the home to the hospital’.  As ever in medical treatment cases in the Court of Protection, the statistics relied on by the judge are the ones the particular health professionals or independent experts happen to cite – we know from other blogs published by the Open Justice Court of Protection Project  in response to this judgment (e.g. here and here) that the statistics in this case may not be universally accepted as accurate.

So, attempting delivery at home was riskier than in hospital, because in the unlikely event that medical intervention was required, it would be quicker and easier to obtain that intervention if the mother was already in hospital.  This in and of itself would surely not be enough to overrule a mother’s wish to have a home birth – the higher risks identified are ones which women often choose to take, having balanced them against other considerations.  In this case, there were two additional factors – the first was that the mother’s agoraphobia might mean she was resistant to going to hospital even if an urgent need for medical intervention arose, and so the delays or risks of transfer were higher than for other women. The second was that the court found that the mother herself would have wanted to give birth in hospital were it not for her agoraphobia. The reasons for this finding are not given, nor does the judgment contain a full account of the mother’s own stated views.

On the first factor, it is notable that there was no evidence before the court about the extent to which mothers with agoraphobia (or other conditions) are in fact resistant to obtaining medical intervention in the midst of labour if advised that it is necessary to ensure the safety of themselves or their baby.  In so many of the cases about mode of delivery that come before the court, the concern of the health professionals is that there will be lack of compliance in labour.  Yet in most cases, the babies are born without resort to force or the authority of the court order. Is that because the existence of the order compels compliance? Or are women in labour, whether they have a mental disorder or not, in fact very likely to comply with medical advice when their safety or that of their baby is at risk?  Does being in labour itself affect the mental functioning of women with conditions like agoraphobia?  

In this case, the independent psychiatrist said that ‘the mother’s ability to co-operate and grudgingly accept hospital transfer would be significantly enhanced’ (if it was advised during labour), but he aded that ‘her co-operation or acquiescence could not however be guaranteed’.

Is a guarantee necessary? There is no real consideration in the judgment of why the court assumed that the mother would remain resistant to going to hospital, if the delivery turned out to be in the (claimed) 10% of cases where urgent transfer was advised.  The judge said that the evidence on the mother’s likely behaviour if that occurred was speculative – but this will inevitably be the case in such a situation, and it cannot be an excuse for not considering all the risks and benefits carefully.

One reason, perhaps, for the lack of analysis, is that the Official Solicitor agreed on behalf of the mother that it was in her best interests for the baby to be born in hospital.  There was therefore no-one arguing the contrary position – that there was a 90% chance that no hospital admission would be needed; that even if it was, it was likely the mother would comply with transfer; that compelling the woman to attend hospital before going into labour would inevitably result in her having a medical delivery (either induction or, more likely given her agoraphobia, a c-section under general anaesthetic); and that the psychological impact on her of a forced hospital delivery in the absence of any need for medical intervention could be severe, affecting not only her ability to bond with her new-born baby, but also her relationship with the baby in the longer term, and her future decisions about pregnancy.  As a result, the judge perhaps felt that he did not need to deal with these arguments in any detail in the judgment, even if they had been raised during the hearing.

The judgment does not set out the risks to the mother and baby of labour being induced, or of the option the mother said was most likely – namely a c-section under general anaesthetic.  So there is no weighing up of these considerations against the risks of a possible delayed hospital transfer during labour.

The only issue in dispute before the judge was whether any physical force could be used to take the mother to hospital, in order for her to be induced or have a c-section.  The Official Solicitor had agreed that sedating medication could be administered to her, but did not support the use of physical restraint (other than if the mother had gone into labour at home and needed to be transferred to hospital in a medical emergency).  

The psychiatrists had agreed that the use of force may have a ‘damaging psychological effect’ on the mother.  The court noted that “It may entrench her agoraphobia. It may damage or impair her bonding with her baby. It may give her long-term flashbacks. It may compromise her attitude to future pregnancies, or her dealings with persons in authority.”  The judge found that these concerns were outweighed by ‘the known, if small, risk that if a pre-planned birth cannot be achieved, some acute emergency may…arise in the home from which the mother cannot be rescued before some catastrophe occurs to either her or her baby’ and relied on the mother’s stated (and unsurprising) wish that no such catastrophe should occur.

Based on the publicly available information in the court’s judgment, order and care plan, I am not surprised that concerns have been expressed about the decision.  There is a lack of detailed evidence about the physical, psychological and emotional risks to the mother of enforcing a hospital delivery on her (in particular a c-section under general anaesthetic).  There is apparently no meaningful engagement with what the psychological risks might mean for the mother and for her relationship with the baby.  There is no detailed evidence or analysis about why it would not be proportionate to transfer the mother to hospital only if an emergency arose, even though the chances of such a transfer were relatively low and it was said the mother would be significantly more likely to accept the medical intervention offered in such circumstances.  Although the use of ‘balance sheets’ has been criticised, they can have the advantage of ensuring that all the relevant considerations are clearly identified, and can then be evaluated and weighed.

For future cases, it would be helpful if there was published evidence about the realities of supporting women with mental health conditions and learning disabilities during labour to give some content to fears about lack of compliance, as well as easily accessible information and expert evidence about the impact of birth trauma.  A judge confronted with alarming statistics about the risk of serious harm to a mother or her baby (in this case, a 10% risk of an urgent medical problem arising and a delay in getting to hospital as a result of the mother’s agoraphobia) will need thorough and considered evidence to enable the various options to be properly evaluated.    

Victoria Butler-Cole QC of 39 Essex Chambers has appeared in many cases in the Court of Protection, including capacity disputes, challenges to DOLS authorisations, welfare matters, medical treatment disputes and financial cases. She is also instructed in medical treatment cases concerning babies and children. She tweets @TorButlerCole

Image by Steve Brown from Pixabay

Choice, human rights and childbirth in the Court of Protection

By Rebecca Brione, 26th May 2021

Over the last two years there have been at least eight cases heard in the Court of Protection concerning place and mode of birth for women who were deemed to lack capacity under the Mental Capacity Act 2005. The case reported last week is the second in a few months about the care of a woman with agoraphobia. Birthrights has been concerned for some time about the extent to which women who are deemed to lack capacity are receiving dignified and rights-respecting care.  As noted in the previous agoraphobia case, “a person who lacks capacity has the same human rights as a person who does not lack capacity”. However, in practice it is sometimes hard to see how this is enacted in birth decision-making, when women’s stated choices, wishes and values are often discarded in their ‘best interests’. 

As regular followers of the Open Justice Court of Protection project will be aware, this latest case concerns a young woman – referred to throughout as “the mother” – deemed to lack capacity as a result of severe agoraphobia, who had left her home only on a very few occasions in recent years. The judgment states that she wishes to have a home birth, but that this is “due to her agoraphobia and fear of going out”. It indicates that there are no clinical risk factors which might favour hospital birth. However, the issue at hand, we are told, is not the relative benefits and risks of home versus hospital, but the risks associated with transfer to hospital, particularly in the event of a “blue light ambulance emergency”, and whether a planned transfer to hospital is in her best interests.

What is striking in this judgment is the lack of detail behind some of the key statements. It is possible that some of this was laid out in Court, however we don’t know. No-one from the Birthrights team was available at short notice to travel into central London to observe the case; and we know that remote observers were not permitted to attend. This has created significant barriers to understanding what was going on behind the ruling, in the absence of hearing the detail presumably spelt out in Court. There was no apparent reason for this failure to make the hearing open and accessible to observers who happened not to be in commuting distance to London. A video link was available and in use for the woman herself and for other witnesses to participate in the hearing. This technology has successfully enabled many other hearings to be observed, and we know in this case observers stood ready and waiting. 

It is particularly frustrating since the Court heard this case before the woman was in labour (so before there was a concern about a contemporaneous obstetric emergency), allowing her to take part in the hearing “at a time when she is not in labour, pain or distress”.  The Judge commented that it also permitted “a thorough and informed investigation to take place, as well as a fair and transparent hearing, lasting many hours, in which to test out the issues and evidence”. Our understanding of the case would be significantly improved by having been able to hear reports of this first-hand investigation into the issues and interests in play, particularly the woman’s wishes, preferences and values, and from having more of the deliberation reflected in the final ruling. We have previously joined with calls from others for cases to come to Court in a timely manner, in particular to avoid women going unrepresented. Yet even in this case, with time and with representation (via the Official Solicitor), the woman’s voice is hard to find in the final ruling.

The judgment states that she “would prefer to give birth at home” but attributes this solely to her agoraphobia. This may be an accurate rendition – some of the legal team involved suggested in their commentary that she wanted a hospital birth – but it is not at all clear from the ruling whether or not this really was the only factor that weighed into her wishes. The expert obstetric and psychiatric witnesses speculated that she might more willing to transfer from home to hospital in the event of an obstetric emergency, but there is no sense of whether she herself had been supported – perhaps by a specialist midwifery team – to consider how she might feel or react in such circumstances, or what care would be most helpful to her if this situation arose.

The judgment gives much more space to the views of her partner and mother, who both support transfer to hospital. Combined with the desire to avoid the risk of a “catastrophe” arising during a home birth, and the statement that “the mother dearly wishes to give birth to a healthy baby, undamaged by birth”, Mr. Justice Holman comes to the view that “but for her agoraphobia, the mother herself would opt for a hospital birth”. 

As a result, he goes on to authorise both transfer to hospital for a planned birth, and the use of force if necessary, the latter against the submissions of the Official Solicitor representing the woman’s interests. 

The judgment does recognise that a forced transfer is “a severe infringement of the mother’s personal autonomy and liberty”, but this is deemed acceptable to avoid the “low” but “grave” risk of a scenario arising at home from which the woman or her baby “cannot be rescued” from grievous harm. For those of us who follow such cases, this reasoning is strikingly familiar. The law is clear that the foetus has no legal interests prior to birth, but inevitably, a healthy baby is deemed to be in the best interests of the woman, despite the harm associated with the actions designed to protect her. 

In this case there is at least an attempt to enumerate (some of) the specific harms which may be associated with the use of force in transfer. This does not always happen. However, the brief analysis is presented as “speculative” only, and it is not clear why the Judge ruled that use of force would be proportionate even in a planned transfer, against the submissions of the Official Solicitor.

The Care Plan

In the interests of taking a balanced view, it is worth noting that the level of detail about the final care plan available in and appended to the ruling is beneficial to commentators who were unable to observe the hearing. However, even here there are concerns. The care plan states that it “takes account of the principles of least restriction and patient choice as far as possible, but ultimately decisions have been taken to ensure clinical safety”. But clinical safety is not (necessarily) the same as best interests. And as Prof. Wilkinson noted in his blog, it is not at all clear why the less restrictive option of authorising transfer in the event of medical indication was not given more consideration.

Similarly, the care plan ostensibly reflects the finding that the woman has capacity to choose between induction of labour or Caesarean once at hospital (although apparently not to choose to wait for labour to start). But even this is troublingly circumscribed with the caveat in the ruling that “unless there is a significant medical contraindication, the hospital will respect and be guided by her choice on the day”. Whilst it is the case that a clinician cannot be mandated to give treatment that they believe is clinically contraindicated, this statement does not paint a picture of a genuine free choice, within a sphere where the woman had been declared to have capacity.

This case is only the latest to rule transfer or obstetric treatment to be in a woman’s best interests, despite her stated wishes and feelings. In many cases, the orders deemed necessary by the Court end up being redundant – in the previous agoraphobia case, the woman gave birth at home before transfer could be effected and in this case the woman apparently accepted oral medication to manage her anxiety and was then guided into an ambulance with the support of her family and midwife. What is rarely known, however, but of huge concern, is the long-term impact on women of going through Court processes and having rulings made about the births of their babies that go against their wishes.

Across this area, much more work is needed. We are hugely grateful to the work that the Open Justice Court of Protection Project is doing to highlight the workings of the Court, making them more accessible, and disseminating expert commentary on some of these hugely challenging decisions. There is unlikely to be a one-size-fits-all response to reducing the number of cases coming to Court in the first place and to ensuring that those that do result in best interests decisions which are firmly and unequivocally rooted in a thorough understanding of the person’s wishes and feelings. Support for those who find their capacity in question is vital, as is a grounded understanding of risk and – as the Judge does refer to in this case – the range of decisions that capacitous women regularly make in the face of similar risk profiles. Over the coming months we are looking forward to developing collaborative work with diverse experts across midwifery, medicine and the law to ensure that women always receive rights-respecting care, even in the most challenging of circumstances.

Rebecca Brione is the Research and Partnerships Officer at Birthrights @birthrightsorg. She is also an independent researcher in bioethics in relation to pregnancy and birth and tweets @RebeccaBrione.

Image; Labour and birth. Credit: Heather Spears. Attribution 4.0 International (CC BY 4.0)

Human rights in maternity and the Court of Protection

By Members of the Perinatal Mental Health (PMH) Midwives UK forum, 25th May 2021

In a recent decision in the Court of Protection (A NHS Foundation Trust v An Expectant Mother [2021] EWCOP 33 (13 May 2021), Mr Justice Holman authorises the use of force if necessary to compel a pregnant woman with agoraphobia to leave her home in advance of her due date to give birth in hospital. 

We are deeply concerned about the implications of the decision on the maternity care of women with complex mental health needs. 

We write as perinatal mental health midwives and members of the Perinatal Mental Health (PMH) Midwives UK forum. 

Specialist perinatal mental health midwives (as well as consultant midwives who have a remit for perinatal mental health) are frequently involved in complex birth planning for women with significant mental health disorders.  (For more information about this role see the Royal College of Midwives document here).

We have experience of creating individualised birth plans for women with severe anxiety, obsessive-compulsive disorder, post-traumatic stress disorder and psychotic illness, as well as agoraphobia.  We have experience of cases where the multi-disciplinary team had positively planned for a home birth as the safest and most preferred option, with care provided by an experienced group of midwives skilled at home birth, and ongoing senior support and planning for labour events as well as planning for possible deterioration in mental health.  Our experience is that in all these cases,  there were safe and happy outcomes – without recourse to court orders or forced hospital transfer.

We are gravely concerned that this judgment permits the use of chemical and physical restraint to enforce a hospital admission, without any actual risk to the life of mother or baby.

This sends a very worrying message to women who want to choose to stay at home to birth their babies.

Forced hospital admission risks psychological impact of further trauma postnatally, damage to the mother’s ability to bond with her baby and to parent,  as well (as acknowledged by the court medical experts) known trauma and long-term adverse effects from the use of restraints.  These concerns have not, in our view, been adequately or fairly considered in making this judgment. 

We believe this judgment to be a form of ‘obstetric violence’ – the over-medicalisation of childbirth without informed consent.  This term was  first officially introduced in 2007 in Venezuela as a new legal term rooted in a human rights perspective (see Perez, 2010, and   the powerful film by Amnesty International here).  It’s defined as:

“the appropriation of the body and reproductive processes of women by health personnel, which is expressed as dehumanized treatment, an abuse of medication, and to convert the natural processes into pathological ones, bringing with it loss of autonomy and the ability to decide freely about their bodies and sexuality, negatively impacting the quality of life of women”.

Place of Birth

In para.11 of the judgment, Mr Justice Holman states that this case is “not about the advantages or disadvantages of hospital birth or home birth” (his emphasis) but it in fact rests heavily upon a claim that home births often result in emergency transfer to hospital and are more likely to result in “a still-born or otherwise seriously damaged baby” (para. 14) – a claim that seems to originate from Professor James Walker, the consultant obstetrician expert witness, and for which no reference is provided. This seems to us a highly inflated claim.

The largest recent and most comprehensive meta-analysis comparing outcomes of intended home and hospital birth(Hutton et al,  2019) finds that  risk of stillbirth, neonatal mortality or morbidity is not different whether birth is intended at home or hospital. A further systematic review and meta-analysis (Reitsma et al, 2020) found women intending to give birth at home were less likely than women intending to birth in hospital to experience: caesarean section, operative vaginal birth, epidural analgesia, episiotomy, 3rd or 4th degree tear, oxytocin augmentation and maternal infection.  

A hospital birth, in particular a non-medically indicated induction or caesarean, has greater risks to the mother and no improvement in outcomes for her baby. Yet women with severe tokophobia (overwhelming fear of childbirth)  are supported in their choice of mode of birth and offered caesarean sections despite evidence that a non-medically indicated caesarean has some increased physical risks for the mother and no perceived benefit for the baby. It is not considered good practice to sedate women with tokophobia and force them to have a vaginal birth. 

But Mr Justice Holman is forcing unnecessary intervention on the agoraphobic woman in this case and increasing her risks of having unnecessary surgery when she is expressing an entirely reasonable wish to remain at home.  At home,  the likelihood is that she will have a healthy baby via vaginal birth without intervention. Instead, it seems highly likely that she will end up with a caesarean section via general anaesthetic as a “choice” she will make arising directly from forced hospital admission (para. 23).

Transfer from home to hospital is often resisted initially and can rarely be ‘guaranteed’

According to Mr Justice Holman:  “The nub of this case is the potential difficulty of transferring this particular mother to hospital if a medical emergency arose, but she was so overcome by her agoraphobia that she would not go.” (para. 11).

In our experience, transfer from home to hospital is not always something women readily agree to at the outset.   However, when faced with an emergency situation most women are strongly motivated to act in the best interests of themselves and the unborn child. The chance of achieving this outcome is even stronger when a woman’s concerns have been heard and validated by the team caring for her. 

In this case, in the unlikely situation where birth started at home and urgent transfer to hospital was recommended, both expert witnesses (one a psychiatrist, the other an obstetrician) considered that this mother would indeed accept (albeit “grudgingly”, para. 19) a transfer to hospital – although this could not be “guaranteed” (para. 19).  As we understand it she has not (in advance of the event) declined transfer in an emergency. In our view, using litigation to control this situation before it has unfolded is unhelpful.

Women with the capacity to make their own decisions about place and mode of birth are legally entitled to make ‘unwise’ decisions.  This includes those with complex physical conditions, for whom birth in hospital is recommended as the safest place.  Nonetheless, they have the human right to give birth in a place of their choice, and are frequently supported to do so.  In this context, we consider it entirely disproportionate to deny to the woman in this case the freedom of choice to birth at home that is afforded to capacious expectant mothers, and to give so little weight to her wishes in this matter. 

This judgment undermines trust between women and caregivers

This judgment has been widely publicised in the media (as analysed in this blog) and has resulted in heightened public awareness of the possibility that a pregnant woman can be forced to comply with an order from a court.  This can only undermine our ability to build good relationships between women and caregivers, thereby making it harder for us to work together to achieve safe outcomes. 

It is this trust which, as specialist perinatal mental health midwives, we seek to build in the most challenging of circumstances to support open conversations about risks and rights. 

The most important theme through all of our experiences in caring for women with severe mental illness (and, possibly, lack of mental capacity for birth-related decision-making) is that we listen to women. We ensure each woman feels safe and heard.  We ensure that we give her all the evidence in a non-biased way, develop a trusting relationship,  and are able to act as her advocate. 

This trust, which supports women making safe decisions about birth and preserves women’s psychological safety, is totally undermined by this judgment. 

The Court of Protection needs midwifery expertise in perinatal mental health (PMH)

From the judgment it appears that the court heard expert evidence from two people.  One was 

Dr Tyrone Glover, a consultant psychiatrist, who gave evidence about the debilitating effect of the woman’s agoraphobia on her decision-making capacity about leaving her home.  The other was  Professor James Walker, a consultant obstetrician with numerous recent publications on pre-eclampsia (which is not at issue in this case). 

We are very concerned that the Court of Protection did not seek evidence from a Consultant Midwife with a remit in PMH and/or a specialist PMH midwife.  Midwives are the experts in physiological birth and in particular home birth, and as such an expert view from this profession should have been sought rather than an obstetric view only. 

As PMH midwives we have a huge amount of experience in the practicalities of birth at home, in midwifery led care as well as supporting ‘out of guidance’ birth plans in complex cases. 

It is a great pity for this woman, and for all women reading about this case who are now concerned about being forced into hospital themselves, that the appropriate expertise was not made available to the court – and, indeed, to the woman herself before the case ever came before the court, thereby avoiding the need for legal intervention.

We recommend that when cases like this arise in future and appear to be heading towards the court,  contact should be made with the woman’s local or neighbouring Trust for a consultant midwife with PMH remit or specialist perinatal mental health midwife. This might avert the need for a court hearing altogether.  Alternatively, we would be available to provide evidence for the court and can be contacted via our team email address: perinatalmentalhealthmidwives@gmail.com

Authorship: This piece was written collectively by members of the Perinatal Mental Health (PMH) Midwives UK Forum. It reflects the opinions of the individual authors not their affiliated Trusts. Unless otherwise indicated each of the authors is a perinatal mental health midwife: Kate Allon, Laura Bridle (also trainee consultant midwife), Susie Cabrillana, Kelda Folliard, Suzy Hall, Mary McCarthy, Louise Nunn (Consultant midwife, PMH lead for maternity and Co-Chair NW London Mental Health clinical network, Chelsea & Westminster Hospital NHS Trust), Bernice Peter, and Laura Walton.  Contact: perinatalmentalhealthmidwives@gmail.com

Photo by Isaac Quesada on Unsplash

Phobias, paternalism and the prevention of home birth

By Dominic Wilkinson, 24th May 2021

In a case in the Court of Protection last week, a judge authorised the use of force, if necessary, to ensure that a young woman gives birth in hospital rather than at home.

The woman (call her ‘P’) has severe agoraphobia, and has barely left her home in four years. Her doctors believe that it would be best for her to deliver her baby in hospital. But P has an overwhelming fear of leaving her home and cannot agree to this. Their particular concern is that P might develop a serious complication during her home birth, need emergency transport to hospital, but be unwilling or unable to agree to this because of the severity of her phobia.

At the conclusion of a three-day hearing, Mr Justice Holman declared that P lacked capacity to make the relevant decisions and ordered that it was lawful and in her best interests for medical staff to transfer her to hospital a few days before her estimated due date, and for medical professionals to offer her a choice of induction of labour or Caesarean Section in hospital.  He also gave permission for the use of restraint, if necessary, in the event that she refuses to go to hospital voluntarily.  

On the face of it, this looks like an extremely concerning infringement of a patient’s autonomy – a view that has been expressed by members of the public responding to media reports (e.g. see the blog post here).   We normally think that adults should be free to make decisions about their medical care, including the freedom to refuse treatments that doctors are recommending. Decisions about place of birth and mode of birth are deeply personal decisions that can be hugely important for many women. For that reason, doctors and courts should be extremely loathe to infringe upon them.

Is it justified in this case, then, to physically restrain P and treat her against her wishes? In particular, is it justified to do this pre-emptively, before a complication develops?

One question is whether home birth is more risky than hospital birth. Large studies indicate that women who plan to deliver at home and are at low risk of complications have lower rates of medical interventions in labour, slightly lower rates of serious bleeding, and similar rates of serious newborn illness. (There are few studies specifically focused on the risk of long-term disability in the child. There is some reason to be concerned that this rare risk is potentially increased in home births.) But those reassuring statistics are based on having the option of transfer to hospital in case of emergency. That occurs in between 1 in 10 to 1 in 3 home births. (In the case of P, a higher risk was cited in the courtroom – of approximately 1 in 2, with about 1 in 100 requiring emergency “blue-light” ambulance transfer. It is not clear the basis for that higher figure). If P were to develop a complication at home and were not able to be transferred to hospital, there would be a significant risk of harm. But harm to whom?

If P were to have a complication of childbirth there would be the risk of harm to herself. But there would also be the risk of harm to the baby and future child. Some jurisdictions and health systems have compelled women to have caesarean section for the sake of safeguarding the interests of the fetus. But in UK law, the interests of the fetus are not (directly) relevant to decision-making. The only considerations relevant are the woman’s capacity to decide, and, if she lacks capacity, her best interests.

Do phobias affect capacity? “Capacity” is the technical term for an individual’s ability to make decisions. The question is whether the person can understand information relevant to the decision, whether they can remember it, whether they can weigh up the pros and cons, and whether they can communicate their decision (s. 3 Mental Capacity Act 2005). 

Mild forms of ‘phobia’ (for example, fear of heights, needles or spiders) are extremely common (one estimate is that they affect 10 million people in the UK). But to be diagnosed with a phobia, that fear must be excessive or unreasonable, persistent and intense.  Severe phobias can be incredibly debilitating. 

Most people with phobias will still retain capacity to make decisions. Decisions that have nothing to do with their phobia will obviously be unaffected. But many people with a phobia can still make decisions affected by their phobia. For example, someone with a needle phobia could decide to have a blood test if they understand that it is particularly important for their health.

For phobias, the relevant issue is not understanding or retaining or communication. It is weighing. Being unreasonable, giving excessive weight to one choice or making an unwise decision is not enough. For someone to lack capacity they must be unable to evaluate their choices. The issue is that a severe phobia can completely undermine an individual’s ability to weigh up the different considerations. Even thinking about the possibility of leaving the home could be enough to cause severe anxiety in someone with severe agoraphobia. If someone has a severe enough phobia, there is literally no consideration that could outweigh their fear. 

In P’s case, it was apparently accepted, without argument, that P lacked capacity to make decisions about delivering in hospital or at home. (She was also reported to have problems affecting her short-term memory and ability to “manage and process complex, multifaceted information”).

The question then turns to whether it is in P’s best interests to have a home birth or to give birth in hospital. 

There were two main options considered. The first was for P to give birth entirely at home, even if complications were to develop (unless in that circumstance she changed her mind and agreed to transfer). The second – the option endorsed by the judge –  was for P to be transferred to hospital in advance of labour to give birth in hospital. (For this blog I will not discuss the further question of the choice of mode of birth, i.e. waiting for natural labour versus induction of labour versus caesarean section).

A third option, would be for P to attempt to have a home birth and to be transported to hospital (potentially using sedation or restraint if necessary) if a complication arose.

One relevant factor for P’s best interests is the medical risks to her and her baby of the different proposed options. It seems clear that home birth (without the option of emergency transfer to hospital) would pose small but significant risks to P’s health. I earlier set aside the direct legal relevance of the interests of P’s unborn child. However, the health of the fetus/baby is relevant to P’s best interests in a different way. In the judgment it was mentioned that P “dearly wishes to give birth to a healthy baby, undamaged by the process of birth”. That strong desire would mean that the health of her child is relevant to her own interests.

But there is more to consider. It would be important to consider the effects of different options on P’s mental health. Giving birth at home (if uncomplicated) would be likely to cause least anxiety to P. But if she were to develop a serious complication and her baby were to be seriously ill or die – that would predictably have a long lasting profound negative impact on P’s mental health. If P were transferred to hospital in advance of labour (or in an emergency) that would also predictably cause her significant distress. In the judgment it was noted that this “may entrench her agoraphobia. It may damage or impair her bonding with her baby. It may give her long-term flashbacks. It may compromise her attitude to future pregnancies, or her dealings with persons in authority.”

Finally, one important consideration is P’s own wishes and values. Best interest decision-making for patients who lack capacity typically places a great deal of emphasis on the individual’s values, wishes, preferences and feelings (s. 4 Mental Capacity Act 2005).  What weight then, should be placed on P’s desire for a home birth?

In other recent court cases (for example this one), patients’ long-standing desires about treatment were highly relevant, even though they were deemed to lack capacity. There could be patients with agoraphobia who also (for example), have a strong desire for a natural birth in their own home, avoiding medical intervention. 

Mr Justice Holman’s view was that, in this case, P’s desire for a home birth was entirely as a consequence of her agoraphobia. “The mother herself says that she would prefer to give birth at home, but she clearly expresses that that is due to her agoraphobia and fear of going out. I am satisfied that, but for her agoraphobia, the mother herself would opt for a hospital birth,” (para 22). Without further information about P,  it is difficult to evaluate this claim. But even if some weight were given to P’s desire for a home birth, the further question would be how to reconcile potentially conflicting wishes. P also strongly wishes for her baby to be healthy.

Mr Justice Holman concluded that option 2 (planned hospital birth) better promoted P’s interests than option 1 (home birth without transfer). 

But the judgment did not to my mind completely settle whether option 3 (home birth with emergency transfer) would not be better still. The Official Solicitor (representing P) argued that it was not proportionate to sedate and restrain her in the absence of an emergency. An emergency occurring in labour would be unpredictable. That could obviously occur at any time of day or night. It may be more difficult to ensure that community psychiatric staff and staff with training in judicious restraint would be available. But it may be possible for some planning to occur. For example, trained staff could make themselves available to be called in an emergency. At the start of labour, midwives attending P in her home would potentially be able to pre-warn the ambulance service or community psychiatric staff. The judge referred to delays in a previous case in obtaining urgent court authorisation for restraint and emergency transfer. But that would not apply in this case, since the court was able to consider the issues in advance. There would inevitably be some increased medical risk in that plan. But it would also give P the greatest chance of being able to have a non-medicalised birth in her own home. Given that P does not have medical features that put her at particularly high risk of complicated home birth, it does seem to potentially be a reasonable compromise and the least restrictive approach to securing P’s interests.

Best interests judgments by their very nature require a complicated weighing process. There is no simple or mathematical way of balancing competing considerations, and different people may reach different conclusions (because of varying assumptions about the probability of different outcomes, or the weight placed on different values). One of the values of the Open Justice Court of Protection Project is the support it provides for observers to watch hearings, hear evidence themselves, and to better understand how the final balancing was reached. (That was not possible in this case.)

There can be rare situations where it is in a woman’s best interests to give birth in a place or via a mode of birth that is contrary to her strong preferences. But whether it is ethically justified in P’s situation, remains – for me at least – an open question.  

Dominic Wilkinson is a Consultant Neonatologist and Professor of Medical Ethics based at the Oxford Uehiro Centre for Practical Ethics  He tweets @Neonatalethics

Photo by Adrien Converse on Unsplash

Dignity and its uses

By Claire Martin, 23rd May 2021

In a previous blog I discussed a hearing before Mr Justice Hayden (COP 11919290 Re LW 29th March 2021) about a woman I called Lucy, her sister (who I called Angela) and an urgent decision about where Lucy should be discharged to, from a current inpatient stay (due to a fractured leg, sustained at her previous care home). 

Although that crisis had been occasioned by the fractures, the court proceedings began back in April 2020.  Angela wanted Lucy to live with her.  She wanted to care for her on a full-time basis – and she wanted to be the primary decision maker, so was seeking a court-appointed Deputyship. A key aspect of decisions around Lucy’s care, as presented by Ruth Kirby QC (counsel for Angela) at the 29th March hearing, was the Local Authority suggestion that living with her sister or family would compromise Lucy’s ‘dignity as an adult’. It was submitted to the judge, by Ruth Kirby, that this interpretation of ‘dignity’ was given undue weight in assessing best interests care provision for Lucy. In the previous blog I started to wonder how the concept of ‘dignity’ is framed and operationalised in our systems of law, care and Human Rights, and this piece[1] expands on these thoughts. I am a psychologist, not a philosopher or lawmaker: these are my initial speculations and I invite commentary.

What do we mean by ‘dignity’? 

The OED defines “dignity” as: “The quality of being worthy or honourable; worthiness, worth, nobleness, excellence.” 

Etymologically, the word stems from the Latin ‘dignitas’, meaning “merit” and “to be worthy”. My take on this is that the origins of the word would suggest that dignity is something all humans have inherent in their humanity – it is a ‘quality’. Dignity is a given. We simply have it, just like we have a heart, and no one can take it away. 

In a review of a 2017 book called Dignity: A History edited by Remy Debes, the reviewers summarise:

“At a certain moment in the history of ideas, dignity became attached to “humanity”, and acquired a foundational moral value. … Christianity taught that original sin blemished human dignity and that only Christian grace offers some restoration. For many centuries, this move rendered dignity … irrelevant as a moral property of all humans. People were expected to behave with dignity and to accept the grace of the Church and her teachings; but they did not hear about any treatment owed them solely because all human beings had dignity. … The notion of “the” or “a” dignity of man surfaced in the Renaissance … The meaning might not have always been the same, but the term has persisted. Interactions with the indigenous people of the New World required European law and theology to come to grips with the moral and legal status of real humans, a sharp departure from the medieval discourse on “monstrous” races and people. In the nineteenth century, “dignity” was a motivating theme in the Latin American struggle for independence from Spanish colonialism. In 1945, four countries mentioned “dignity” in their constitutions. In 1948, the UN Declaration of Human Rights celebrated “human dignity” as its foundational value. By the end of the millennium, over 150 countries incorporated human dignity in their constitutional law. About ten years ago, an unprecedented wave of scholarly books on human dignity in ethics, bioethics, political theory and law began rising.”

This paper by Saxena in 2015 describes more recent, 20th century, uses of dignity such that: 

“it was introduced into legal frameworks in the twentieth century through the Universal Declaration of Human Rights (UDHR) in its first article which enshrined the notion of universality of human dignity in international law, by stating that, ‘All human beings are born free and equal in dignity and rights’.”

So the idea that we are born with dignity, if this is how it has come to be seen, would suggest to me that it is not something that can be removed – it can be attacked, violated, humiliated perhaps, but not removed. How, then, can it be a ‘right’? It’s leading me to think about who gets to define ‘dignity’ and the political history of its use. The review of Debe’s book, above, suggests that the Western social and political framing of dignity has become dominant – and what I have read suggests that this has then filtered into law and its interpretation, particularly in Western countries. From that, its use will filter into social practices including health and social care via case law. I wonder whether Lucy’s Local Authority was basing their idea of ‘dignity as an adult’ on any previously contested cases or on written guidelines that they adhere to? 

That line – ‘dignity as an adult’ – suggests some fairly fixed criteria. It seemed, for this Local Authority, one benchmark is ‘not living with one’s parents’. They are not able to contribute to this blog – so of course this might not be how the Local Authority interprets it – it could be that the particular staff involved were of this view, and were not reflecting an organisational standpoint. However, to hold this position, especially in a court hearing, as a reason why a person should not live in a particular setting seems to be a view that is held strongly enough to prohibit consideration of that option.  In short, whilst the Universal Declaration of Human Rights states that “all human beings are born free and equal in dignity and rights”, authorities and organisations have tended to qualify dignity in terms of a set of criteria. Any such qualification by definition undermines the rights of all persons to claim dignity.

For example, the qualification of dignity in relation to living independently from one’s parents normalises white, Western households. What does that principle say about people from communities who live in multi-generational households as a norm, both in the UK and around the world? Or people who (with capacity) choose to live with their parents, for whatever reason? How has the human need for care and community with other people become a criterion for assessing dignity? 

Dignity in law

Dignity also seems like a very tricky concept to use in law. How can it be operationalised? I got a bit lost down the rabbit hole of the legal approach to human dignity in the UK, and legal scholars would be much better placed to discuss this than I am! 

I did find an article from 2012 by Conor O’Mahony really interesting: “There is no such thing as a right to dignity.” His end point (I think!) is that the idea of ‘dignity’ as a right should be abandoned and separated from rights that can be measured and put into operation more easily – such as autonomy and equal treatment. He quotes William Binchy (an Irish lawyer): “[i]ts meaning depends greatly on the philosophical premises of those who invoke it; the range of such premises is so broad that ‘dignity’ can have completely opposing connotations.” 

The concept of dignity has been used variously as something which people have a human right to, and also as something on which human rights depend. It can’t be both really. My – probably simplistic – take on the subject, is that human rights are not something that just exist, out there: we organise to agree what ‘rights’ we give to one another and we invent structures to hold organisations and states to account for upholding (or not) those rights. I’m not sure how useful it is to place dignity as a right – as William Binchy says:

“As a baseline for recognizing our shared humanity, equal human dignity has a ringing appeal. But in concrete cases, human dignity will often fail to provide any specific guidance precisely because there are many different and conflicting conceptions of what dignity may require.”

Quite.

Dignity in care

What about ‘dignity’ in our systems of care? What is it meant to look like? How do we know if it’s happening? 

In a quick internet search on dignity in health and social care, I could not find any principle where ‘dignity as an adult’ is conceptualised in the way it seemed to be for Lucy. 

In the Health and Social Care Act 2008, ‘Regulation 10’ is entitled ‘Dignity and Respect’ and has the following guidance: “Staff must respect people’s personal preferences, lifestyle and care choices“.

The 2009 Royal College of Nursing document, Dignity in Healthcare for People with Learning Disabilities, reads like this:

So with reference to that third bullet point – not too far away from one’s family and friends, but not too close either! 

Whilst it might not be known exactly what is Lucy’s personal preference for where she lives – it is likely that increasing distress, behaviour that others find challenging, and an unwillingness to eat are communications of dissatisfaction with something about her current circumstances, warranting further assessment. I would argue that it is narrow and selective that a rule or idea about what it means to be ‘an adult’ might outweigh other relevant factors in making a decision about someone’s life  – such as a person’s relationships and where they evidently feel safest and most at ease. 

The SCIE (Social Care Institute for Excellence) weblinks (1) here and (2) here to Defining Dignity in Care suggest dignity involves:

  • “ …treating [people] as equals and providing any support they might need to be autonomous, independent and involved in their local community..”
  • “Dignity in care means providing care that supports the self-respect of the person, recognising their capacities and ambitions, and does nothing to undermine it.”

This would suggest that, when thinking about the concept of ‘dignity’ in care settings, there is something crucial about the lens being from the perspective of the cared-for-person – when and how do they feel safe/respected as equal/autonomous? how do we know this? which relationships are key to this safety/equality/autonomy? what are the conditions to enable this person flourish in all ways possible?  This might be very different for each of us. Is it possible that services/others impose a meaning of ‘dignity’ on a person, from the perspective of their own lens? So: ‘X is an adult – it’s not appropriate (dignified) for them to be living with their family’. 

In older people’s services there has been contention over doll therapy for people with dementia and whether this practice compromises ‘dignified’ care. There’s a body of research around the benefits and concerns of using dolls for people with dementia as part of their care. This paper by Alander, Prescott and James highlights that: “Clearly, there is an ethical tension in doll therapy involving dignity, autonomy and benefit. … At the heart of the ethical dilemma is how other people view and respond to doll therapy within the care home settings”.

Who could argue that ‘dignity’ should not be maintained? It all feels a bit vague – and entirely subject to individual, system and cultural views on what constitutes ‘dignity’.  This brought to mind Ernesto Spinelli, a psychotherapist and existential theorist, and the difficulty in defining ‘therapy’ (see Demystifying Therapy 1994).  He invokes Wittgenstein’s argument for ‘open concepts’ and the example of games:

“While it may seem, at first, to be the easiest thing in the world to define a game, nevertheless, as Wittgenstein so ably showed, this is far from the case. For the concept of games is an open one in that, on closer inspection, there exist no features that are common to all games. … While all games share some properties with some other games, no games share all properties with all other games. … Similarly, it may well be far more useful and satisfactory for us to ask ‘When is therapy?’ rather than ‘What is therapy?’. For in doing so we can then begin to focus on the contextual features of therapy rather than continue with our vain attempts to eke out their definitional properties” [pp42-44]

So, might it be more helpful to query ‘When is dignity?’ rather than ‘What is dignity?’? When is dignity maintained for this person, now? When are the ‘signs’ of dignity visible (such as being treated equitably, feeling safe and respected, being able to have a ‘voice’ and be heard and exercise choice as far as it is possible, in whatever way you can communicate  – embodying the ‘autonomy’ that contemporary ideas of dignity seem to hold key)? In other words, what are the ‘contextual features’?  If we know when this person’s dignity is maintained we can therefore know how to recognise environments and situations when their dignity is disrespected, attacked, ignored, humiliated – and perhaps our focus should be on what those contexts are for each individual person. 

It is hard to accept that Lucy’s ‘dignity’ is maintained when there are increasing incidents of distress and communications through behaviour that, for her, are indications of lack of comfort or a sense of safety (e.g. smearing faeces). If we think about Maslow’s theory of the hierarchy of our needs, we heard that in recent times, Lucy often stopped eating and drinking, her sleep was affected, and she could become dehydrated. These aspects of her experience are the most basic of needs in the hierarchy – perhaps when dignity is maintained for any of us, the foundations of our needs must come first, and arguably before any externally imposed definition of what living as an ‘adult’ entails. 

The SCIE website further talks about the role of relationships in dignity in care:

“Surveys involving people who receive or provide social care frequently emphasise relationships above all: between the person needing care and their carer, within groups in residential care, and between the people receiving care and the wider community.”

Relationships and their vital importance to our healthy functioning as humans (our dignity?) are conspicuously absent in the quickly accessible literature I have found on the subject. The ideas seem to centre on autonomy, independence and self-determination. All well and good – yet we know that these aspects of our being are only possible within relationships (see, for example, Why Love Matters by Sue Gerhardt) that foster our basic needs and allow us to move up the pyramid to these more lofty ideals. 

From the information at the hearing, as well as their idea of what defines ‘dignity’ as an adult, the Local Authority’s position seemed to focus on Lucy’s physical and rehabilitation needs  to inform their view on a best interests’ environment. Whilst these things are, of course, important, there seemed a similar lack of weight given to her relationships, and how important they might be for her sense of safety, as foundational to facilitate engagement with physical interventions to assist daily living, let alone further rehabilitation of her injuries. In Maslow’s hierarchy, a sense of safety could be seen to be a prerequisite for Lucy to be able to engage with rehabilitation. Dignity could be seen in the psychological safety of her environment.

Alex Ruck Keene, barrister with expertise in the law and mental capacity, has recently blogged about the use of the concept of dignity in law: 

I think I would agree with this, and further argue that an objective definition of dignity is not actually possible. As I said, I am not a philosopher, or lawyer, and have just been thinking more about this concept for this blog and for what it means in my work with older people – and I have come to an (interim) conclusion that ‘dignity’ has the potential to be such a catch-all, that everyone and anyone could invoke it to support any position, meaning (as Alex Ruck Keene notes) the concept ‘obscures as much as it illuminates’. 

Claire Martin is 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 many blog posts about hearings she’s observed (e.g. here and here). She tweets @DocCMartin

[1] With thanks to Professor Louise Amoore (@AmooreLouise),  Professor of Political Geography, Department of Geography, Durham University, for comments on an earlier version of this blog post.

Photo by Dave Lowe on Unsplash

First Impressions of Hayden J in the Court of Protection

Emma Heron and Olwen Cockell, 21st May 2021

Editorial Introduction (Celia Kitzinger)

Two relative novices to the Court of Protection had their first experience of a hearing before Mr Justice Hayden on 20thMay 2021.  They record their impressions here.  

I also observed this hearing (COP 1275114):  a s.21A challenge on behalf of a man in his 40s with “learning disability at the most severe end of the spectrum“, autism, and epilepsy.  

It was an unusual case for a Tier 3 judge but had apparently been transferred by District Judge Eldergill because P’s mother was also his Deputy and, at some point, was refusing to accept that his placement met the best interests requirement for a Standard Authorisation.  This meant that the authorisation conflicted with other existing authority for P, meaning that the ‘no refusals’ requirement was not met.  This raised the question of what happens when you get a refusal from a Deputy when there’s no immediately available option – which was the legal issue warranting a Tier 3.  That refusal is, however, “historic”, and the case is now, according to counsel,  “a simple s.21A challenge, albeit with complicated facts”.  On that basis Mr Justice Hayden disengaged from the “interesting academic question”, saying that the Court has “no time to satisfy people’s intellectual curiosity” about issues that are not of direct and immediate relevance.  

My understanding is that there was an agreed order but that Mr Justice Hayden called the case in nonetheless because (in his words): “I do not on my inevitably superficial reading of the papers get a sense of a man who is being afforded the opportunity to develop his potential, whatever that might be.”  The evidence from an expert witness (described by the judge as “cogent, detailed and long”)  suggests that P’s current care home “is not properly attuned to, or educated in, the kind of care than will enable P to achieve of his best – or, never mind achieve anything, but be happy and enjoy life more”.  

All parties seem now to accept that P’s current placement is not in his best interests, and – pending a move – there is some concern to improve life for him where he lives now. Hayden J’s focus in this hearing was on practical issues like provision of “Now and Next” cards to support P’s transition between activities, and investigation of the possibilities of enabling him to take part in more of the activities he enjoys: cycling, swimming and hydrotherapy, in addition to his current use of the gym.

P’s mother, present in court, has some concerns about sporting activities because she worries that her son’s epileptic seizures make them unsafe.  Hayden J asked for a neurologist report as soon as possible, said that P should not be deprived of activities that might benefit him and added a personal note: “I’m not really much of a gym person myself, Mrs X, but I do like to get out on my bike and I suspect P might like – not quite the freedom of the open road, but getting out in the fresh air.”

I’ve watched Mr Justice Hayden in more than 30 hearings – amounting to well over 100 hours. For Emma Heron (research nurse and LLM student) and for Olwen Cockell (speech and language therapist and Registered Intermediary), this was their first exposure to him. Here’s how they found the experience.

Emma Heron: Learning to Wait

When I woke up this morning, the last thing I had on my mind was observing a Court of Protection hearing but as I logged into twitter to see my messages a post caught my eye:

Actually, I did have the time (unusually!) and I’d been hoping to observe a case for months.  Maybe this would be the opportunity.  I hastily copied down the email address and the case reference and sent my request to the court.  

I waited and waited but got no reply – until eventually I contacted Celia who suggested emailing the Royal Courts of Justice again with the judge’s name in the subject line and the word “URGENT”.  Still no reply with 15 minutes to go before the hearing, so she emailed the judge’s clerk for me and also tweeted to alert Her Majesty’s Courts and Tribunal Service (@HMCTSgovuk) that there was a problem for me of gaining access.  All was well in the end – I was sent the link in time and I was able to observe.  

Excitement turned to anticipation which turned to a minor panic.  The seriousness of the situation suddenly hit me and once I was in the virtual court room I had a hundred questions.  What if I pressed the wrong button? Was I doing the right thing and would someone tell me if I wasn’t?   Was I going to be found to be in contempt of court if my microphone suddenly defied the laws of normality and came on in the middle of the hearing?  Fortunately, there was a delay, as the judge was still involved in a different case.    A wait and a breather were just what I needed to gather my thoughts and think about what I was hoping to get out of the hearing.

Of course, originally, I’d hoped to observe a hearing before I’d written my assignment for the last module I had done, which covered mental health law. Well, that boat had sailed.  But this was a perfect opportunity to listen in and embed the knowledge from my module, seeing the practical application in “real life” as it were.  I wanted to look at the attendee list to see how many people were on the call, but I kept my fingers to myself and listened patiently, waiting for the judge to arrive.  There was still a little residual concern I’d press the wrong button!  I’d assumed the hearing would start on time but it was about 45 minutes before the judge arrived.  I’d say if you are thinking of attending, do prepare for this as a possibility (and it also means the hearing finishes later than you’d expect).  

We got started.  I whispered (yes, the microphone was on mute but I figured you can’t be too careful!) to ask my husband to make me a cuppa having heard him put the kettle on. 

There were several reminders from the lawyers that there were members of the public present.  I felt this was really good as I think it might have made sure things were explained a bit better – and there was a helpful summary at the beginning to provide some context setting for the observers.

The first thing that struck me as I listened to the summary of what had happened so far was the length of time it had taken to get to this point.  The time it had taken for various services not do have done things.  And, most importantly the time the person at the centre of the case was having to wait to have the issue resolved. I experienced several emotions during the first half hour.  Frustration, amazement, and yes just a little bit of anger.  It all just seemed to have been stretched over such a long period of time.  As the judge said at one point, “I find myself wondering what has been going on in this case for so long to achieve relatively little”.  

I was judging.  Oh yes, indeed I was.  I had so many things whirring around my head, questions I wanted to ask, objections I wanted to make.  Worried that the judge might miss something, that he would fail to fully understand a certain perspective that I could see as a health care professional.  What if he couldn’t? It was hard.  And – I was not the judge! 

Just as well really.  I need not have worried.  As the hearing unfolded,  I was struck by the calm, unhurried pace and attitude of the judge.  Nothing was going to slip him by.  He was not going to make any sort of judgement until he was ready and he knew exactly what he would need in order to be ready.  He had a methodical system of listening, summing up, questioning and clarifying.  There was one point in the case where he wanted a piece of information, prompted by a comment that had been made by one of the participants.  Various answers were given, offers of what he could have but he knew what he wanted and persisted.  There was no fobbing off, no letting things slip, no lapses in attention.  Every single comment and insight seemed carefully added to the story that was unfolding and he was in control of it all.  All of my worries I’d had about things being missed, things not being seen fell away.  This was an expert at work and it was really a privilege to see.  He was able to grasp the “zoomed out” view without losing sight of the key issues and without a hint of disrespect.  

It struck me as I carried on listening that although my head had been full of thoughts and judgements, his most certainly wasn’t.  Not at that stage, anyway.  And this is perhaps the most important thing I took away from the session.  He is a judge.  And yet he was not quick to pass judgment.  He knew when that time would come and he wasn’t going to go anywhere near that territory until that time was there.  What a lesson to learn.

Unfortunately I had to leave the session before the end – note to self the timings are approximate! – but it was an experience I feel honoured to have had and I am sure one that will be repeated again one day.

Thank you to the Open Justice Court of Protection Project for enabling me to grasp this opportunity through sharing the knowledge and providing guidance every step of the way!

Olwen Cockell – Building a holistic profile

The hearing commenced with the court clerk reminding all parties about the various regulations about confidentiality and Mr Justice Hayden then welcomed all parties. 

Mr Justice Hayden did request advocates to give a little background but this was really brief and I actually gleaned more of a sense of the purpose of the hearing from the various exchanges that went between the legal representatives before the hearing officially started.

Legal representatives had actually referred to P by his first name in their informal communications in the virtual waiting room, but I noted that they changed to use of  initials when Mr Justice Hayden opened the hearing. I liked it that Mr Justice Hayden asked for P’s proper name to be used as I felt this personalised the case. 

From piecing together various snippets of information given about P, I learnt that he is a man in his 40s with considerable difficulties in cognition and communication associated with a primary diagnosis of autism. He is non-verbal and he relies on routine/structure/predictability so that he can function day to day. His mother talked about how his behaviour was calmer and more manageable when he lived at home (for the first 36 years of his life) and benefitted from the very tight routine he was afforded there. For example, she described how when he had a bath, she always washed him in the same order: first his hair, then his face, then his shoulders – and the same thing when drying him.  She said this kind of routine really helps him. “I tried to tell the care home this, and they didn’t pay attention to me”, she said – adding that she’s pleased that the need for routine is emphasised in the expert report.

Unfortunately,  it seems that P’s  residential facility is not offering the level of routine and structure that P needs nor is he being offered opportunities for sensory stimulation that he craves. This has led to his mother to be very concerned about the level of care P has been receiving at his care facility.  The independent expert assessment has made a number of recommendations for how P’s needs may be met going forwards. Some of the recommendations could be very easily implemented (e.g. use of a visual timetable); others such as swimming and hydrotherapy may prove more challenging to deliver.  Mr Justice Hayden also emphasised the importance of obtaining an up to date objective assessment of P’s medical/physical health to ensure that these activities would be safe for him – recognising his mother’s concerns about his safety but saying “I don’t want to have to rely on Mum because she’s Mum – which is a tribute, not a criticism“.

The hearing also touched upon P’s best interests in terms of his long-term accommodation needs (domiciliary vs residential) but Mr Justice Hayden felt P’s interests would be best served in the short term by a care plan being expedited within the residential care setting.

Mr Justice Hayden showed great humility, taking time to listen and talk to P’s mother, who clearly knows and loves her son very much, so that he could get a fuller sense of P as a person. He also was very keen to have sight of objective expert reports about P so that a comprehensive, holistic profile could be built up.

Through the course of the hearing,  Mr Justice Hayden gave all participants sufficient opportunities to contribute, emphasising the importance of positively moving forwards.  He closed off one line of argument with the comment: “We’re now unlocking past pain to some degree which probably is no longer productive”.

I left the hearing feeling that Mr Justice Hayden had developed a sense of who P  is and that his management of the hearing was laying the necessary groundwork so that all parties can start working towards an agreed plan that will meet P’s best interests.

Emma Heron is a research nurse, currently working in South Wales and an LLM student at Cardiff University.  She blogs at www.receivingconsent.com and she tweets @nyrs_emma 

Olwen Cockell is a dual-qualified speech and language therapist and primary school teacher.  Olwen is based in Kent and has supported children with language and learning for over 20 years.  Since 2015 Olwen has worked as a Registered Intermediary and assists children with speech, language and communication needs when communicating evidence to police and to the courts.   She tweets @olwenc

Photo by Thomas Park on Unsplash