Lasting Powers of Attorney: Preferences and Instructions

By Heledd Wyn – 3rd September 2020

Hearings in the Court of Protection sometimes include consideration of Lasting Powers of Attorney (LPA). Did the person have capacity to grant the LPA? Do they have capacity to cancel it? Is the attorney acting in the person’s best interests?   In this blog I consider the importance of LPAs as part of advance care planning, with particular focus on one part of the LPA form – the section on Instructions and Preferences.

The Mental Capacity Act 2005 introduced for the first time a provision for people to appoint someone of their choice to make health and welfare decisions for them if the time were to come when they were not able to make these decisions for themselves (ss. 9-14).  This is the Health and Welfare Lasting Power of Attorney.  There is separate provision for a Property and Financial Affairs Lasting Power of Attorney (which replaced the earlier Enduring Power of Attorney).  More information about both the “Health and Welfare” and the “Property and Affairs” LPAs (and guidance about how to make one, including a telephone information line number) can be found on the government website here

A power of attorney is a document that must be entered into as a deed under which one person (“the donor”) grants to the other person or people (“the attorney(s)”) the power to act on behalf of and in the name of the donor. Without getting too legally technical, a deed is a written document which is signed with a number of formalities and creates a binding obligation once it has been signed.  This is important when considering creating and using Lasting Powers of Attorney as a deed, once signed can only be revoked by another separate deed. 

An LPA must be completed using the specific form designed for that purpose (here) and must be registered with the Office of the Public Guardian (OPG).  It is possible for members of the public to complete an LPA form online themselves, or there are solicitors specialising in this area who can help.

No matter how you choose to complete the LPA forms (whether online yourself, on a paper copy requested from the OPG, or with professional assistance) you will be asked to consider setting out your “Preferences and instructions”. This is the part of the form where you can tell your attorneys how you’d prefer them to make decisions, or where you instruct them as to what they MUST do.  The form tells you that this is optional and that “Most people leave this page blank – you can just talk to your attorneys so they understand how you want them to make decisions for you”. 

To my mind, this section is the most important part of this form! 

Simply signing a piece of paper giving authority to another person is really not very useful. How is an attorney to know what you would like them to do when the time comes to make decisions? An attorney – whether they are family, friend or professional is required, by law, to act in the best interests of the “donor” (the person on whose behalf they are making decisions) and this means – amongst other things – giving great weight to the incapacitated person’s values, wishes, feelings and beliefs.  Unless you wrote down what those were, it can be hard for the attorney to feel confident that they are doing a good job.  

LPAs are not simply pieces of paper to be bandied around. They are powerful documents and ones that really should have a lot more thought put into them than simply slotting in names and addresses of those who have been persuaded that they can take on the mantle of managing the life of another adult who no longer has capacity when they have little concept of the difficult burden this can be.  In fact, attorneys sometimes become “frozen” – overwhelmed by the responsibility of making potentially life-changing decisions for someone, perhaps having accepted the role of attorney without any appreciation of how difficult this can be, or not having adequately discussed or been informed about the person’s wishes.

By giving proper consideration to the section called “Preferences and instructions”, these documents can be infinitely more useful, providing support and information to the attorney about what the donee wants them to do. 

Let us take each in turn and look at some of the questions that should be asked, the answers considered carefully & proper note made of them. 

Property & Financial Affairs

Some things that you may want to consider are:

  1. Who is on your existing professional team? Think accountant, financial adviser, lawyers. 
  2. Where are all your bank accounts/investments held? Do you have a neat ‘black book’? Or are you someone who keeps their financial affairs in total disarray – yet you know where everything is. 
  3. Will your family know how to contact your financial adviser/solicitors/accountant? Do they have their contact details? Incidentally, I think it is a good idea to use the opportunity to ‘notify’ these people in the LPA form – that way there is always a record of the team & they can be tracked down much more easily. 
  4. Do you have any particular views on investing; e.g. ethical investing? Will your attorneys know to honour these wishes? 

Instructions will use the words such as “must”; essentially a command to your attorneys that they have to do something specific. Examples of “instructions” given in the  OPG Guide include:

“My attorneys must send annual accounts to my brothers and sisters.”

“My attorneys must continue to donate to charities that I have supported or for which I have set up standing order payments.” 

Preferences will use words such as “like” or “prefer”, and are intended much more as guidance to your attorneys what they might want to think about rather than being prescriptive. Examples of “preferences” given in the OPG Guide include:

“I prefer to invest in ethical funds.” 

“I would like to maintain a minimum balance of £1,000 in my current account.” 

Health and Welfare

This is possibly the most important section to complete as it allows you to discuss, consider and specify, key issues such:

  1. Where you might like to live in the future
  2. Who your attorneys should consult with when making decisions?
  3. What your current health is like – including any diagnosis and prognosis
  4. What medication you are taking that may affect decision making ability
  5. Whether you have hearing aids or glasses?
  6. Who is your existing GP, dentist and optician?
  7. What is your religion?
  8. What food and drink do you like/not like?  
  9. What hobbies do you have?
  10. What sort of treatment would you accept or decline?
  11. Do you have an existing advance decision?
  12. Have you discussed your wishes about DNACPR with your GP/hospital consultant? 

Examples of “instructions” given in the OPG Guide include:

“My attorneys must not decide I am to move into residential care unless, in my doctor’s opinion, I can no longer live independently.”

“My attorneys must ensure I am given only vegetarian food.”

Examples of “preferences” given in the OPG Guide include:

“I would like to take exercise at least three times a week whenever I am physically able to do so. Whether or not I am mobile, I would like to spend time outdoors at least once a day.” 

“I’d like to be prescribed generic medicines where they are available.” 

The possibilities here are endless, but there may be some things that are absolutely ‘set in stone’. If these things that are so important to you are not written down, how is anyone to know what they are in the future? 

An alternative view? 

If you are not sure that you are able to commit to these instructions or preferences – then you may want to consider a letter of wishes or a side letter. This is a separate document to the LPA and can contain all these instructions and preferences. However, unlike if they are included in the LPA itself, they are not legally binding. They should act as a guide to your attorneys and they may feel themselves morally obliged to pay attention to what you have set out. However, unlike something that is set out in the LPA (as part of the formal deed) these wishes could potentially be overridden. 

What should I do? 

Much will depend on your own views and whether you have strong views on things that you are sure will not change or whether you are someone who likes to ‘tinker’ with things as life moves on. If you are determined that something should or should not happen – then it should go in the LPA. If you want the flexibility, then put it into a side letter as you can then alter this as life changes. However, if you do take this option, make sure that your attorneys know where you have kept your letter of wishes – they are of little use separated from the LPA! 

If you are very clear on how your attorneys should act, this would mean less ambiguity. Less ambiguity means fewer opportunities for (mis)interpretation of your wishes and feelings. Should your attorneys be called upon to explain their actions – either by the OPG or the Court of Protection, it will be much easier for them to simply point to the instructions and  preferences you have set out.  If there were ever any form of ambiguity or dispute, it is far better for all concerned to have a set of instructions and preferences to rely on rather than having to second guess someone’s wishes and feelings. 

Heledd Wyn is Director and Head of Long-Term and Elderly Care at Gregg Latchams Solicitors providing full consultancy services relating to estate planning, long term care and asset protection. Heledd has experience in inheritance tax planning, NHS Continuing Health Care Funding and complex Court of Protection applications.  She tweets @Heledd_Wyn 

Photo by Scott Graham on Unsplash

Justice Delayed

By Gill Loomes-Quinn – 1st September, 2020

In February 2017, as part of my PhD research, I spent a month at the Court of Protection at First Avenue House, High Holborn, in London. In this blog, I share my observations from the first of fourteen hearings I observed during this time – focusing on what was to become a key theme across my observations: that of Delay as a feature of cases in the Court of Protection. I consider the causes and impact of delay in this particular case, as well as my responses to these observations as a disabled activist and socio-legal researcher.

If anyone were to ask me for advice on how to approach a PhD, something I would emphasise first and foremost would be to grasp any opportunity that comes your way, and to keep your eyes open for ways to create your own chances. It was this approach that led me to London, to the Court of Protection at First Avenue House, High Holborn. And so it was, on 3rd February, 2017 that I arrived for the first in a month of hearings I observed – accessing the court as a public observer under the (at that time) relatively newly implemented Court of Protection Transparency Pilot. I have written elsewhere about my experience of using the Transparency Pilot to access “Open Justice” in the court, so here I introduce the first hearing I observed and consider it from the perspective of what it reveals about mental capacity “law in action” in the Court of Protection, and about the role of the court in the lives of disabled people.

The Hearing

The hearing was part of an ongoing case – Case No. 12275212 ADHB v Rotherham Metropolitan Borough Council and was listed for 10.30 am before District Judge Glentworth. I arrived at court with Paul Magrath of the Transparency Project who had kindly agreed to accompany me to my first hearing, and we found our way to the waiting room where Paul explained the Transparency Order to me. A key feature of my observations, conducted physically in the court (as opposed to the remote hearings being conducted as a consequence of the Coronavirus pandemic), was the contribution of the waiting room to my experience. Across the month, the waiting room functioned as an interview space for me to talk to counsel in a hearing I was observing, or to court staff in order to learn more of the work of the court, and their views on “transparency”. It also enabled me to observe parties arrive and introduce themselves to each other informally before entering the court room. This was sometimes extremely useful for figuring out the roles of the different “actors” (although it was not always easy, and my assessment was sometimes incorrect). In this instance, it was my classroom, as I attempted to soak up everything I could about “transparency in action” and what it meant for the legal culture that surrounded me. This was a steep learning curve.

On entering the courtroom itself, Paul and I were directed to a row of seats against the back wall. No desks or other writing surfaces were available, and when Paul asked the member of court staff directing us if we could use a desk in front of us with a sign reading “for parties’ use only” on its top, he was answered with a shake of the head. This presented a practical problem in terms of how I might take notes during the hearing (recording of hearings is not permitted), and also materially shaped the role of public observer – as someone apparently expected to watch the “performance” of proceedings, but not to engage with the substance and the discourse of the hearing in the depth that required the taking of detailed notes. 

Everyone stood as the judge entered, and the hearing began. The judge asked Paul and me to give an account of our reasons for attending the hearing – “for the tape”. She also referenced the Transparency Order, confirming that we had been given a copy, but not requiring us to confirm we had understood it. While there did not seem to be any suggestion that we should not be there, I experienced it as a little daunting to be asked to speak in court. On reflection, I also question the fact that we were required to explain our presence in a hearing listed to take place in “public with reporting restrictions”. It seems to be an unnecessary barrier to Open Justice for a member of the public to be expected to justify their presence in a “public” court. After this preliminary procedure, the substantive hearing began.

The hearing was part of an ongoing case concerned with “varying or terminating an urgent or standard authorisation under the Deprivation of Liberty Safeguards”. It began with what was to become a theme across many of my observations: delay. In this instance, the respondent (the Local Authority) had requested an adjournment to this hearing following three previously vacated hearings. Following the court’s refusal to adjourn, the Local Authority had informed the judge by email of its decision not to attend. So the Authority was not in attendance or represented at this hearing – a circumstance that the judge described as “staggering”. I then heard of the litany of preceding delays to the progress of the case so far – including in obtaining an appropriately qualified psychiatrist to assess P’s capacity. This was highlighted as particularly concerning as P’s condition is progressive, and it is possible that at the start of the process of attempting an assessment (around November) he may have had the capacity to make the relevant decision(s) himself. There were then further subsequent delays (of around 55 working days) and adjournments to allow the Local Authority time to identify a possible placement for P, which may involve his social worker “outsourcing” this placement.

The judge summarised her concerns about the impact of ongoing delays on P, saying she was aware that he had “expressed impatience”, and “must be wondering whether the court cares”. She also discussed with counsel for P the fact that P had expressed a wish to attend hearings relating to his case, but no steps had been taken to facilitate this. It would apparently be difficult for him to attend court in the morning, but, as the judge put it “the court is responsive” and an afternoon hearing would be possible. In principle, it would be possible for P to attend court with the support of carers, although today the care home did not believe it to be in his best interests to attend. There was a question as to whether it would be possible for the court to visit P at his care home, though the judge commented that resource issues may prevent this, as “we’re down on numbers”[1]. It was concluded that it was for those representing P to make the arrangements for a visit and that his solicitor should take responsibility for this. This was apparently “in accordance with the terms of the order” – which had presumably been agreed at a previous hearing and was unavailable to me, so I was not clear what exactly the terms of the order were. Such gaps in my decoding of proceedings were to become an ongoing feature of my observations, as judges and barristers frequently referenced documents to which I did not have access.

At the time of this hearing, P was resident in a “nursing home” and was described by the judge as “not an easy person to place”. I learned that he “wants something he can’t have” i.e. to live with his wife – this was not possible because it was apparently not what his wife wished. There was some confusion about P’s precise diagnosis relating to his loss of capacity – with it initially being described as Korsakoff’s Syndrome. However, Counsel for P informed the judge that a psychiatrist had questioned this, suggesting an alternative diagnosis of “alcohol-related dementia”. At this point, I was struck by the care and precision the judge applied to being clear about what was and wasn’t known about P’s condition, and to emphasising the boundaries of her professional role and expertise – “I’m not a psychiatrist, I don’t understand the distinction if there is one. I think we should be talking about alcohol-related dementia”. Without the respondents (the Local Authority) present in court, there was very little scope for progress in the case. Following discussions about the delays and their impact, it was arranged that a further hearing should be scheduled for 14th March 2017 (a further 5 and a half weeks away), and that arrangements should be made for P to attend “if the Official Solicitor considers it is in [his] best interests to do so”.

I then heard the judge say, and hastily scribbled down, that she was going to order costs against the respondent Local Authority under Rule 159. I had no idea what this meant, but after the hearing attempted to decode it, beginning by consulting the Court of Protection Rules[2]. I found that Rule 159 is concerned with “departing from the general rule” i.e. for determining the payment of costs for hearings to do with property and affairs (Rule 156) or personal welfare (Rule 157). As this hearing was concerned with a personal welfare decision, Rule 157 dictates that generally there will be no order made as to the costs of proceedings. The departure ordered today meant that the respondent Local Authority must cover the court costs of themselves and the applicants as a consequence of their failure to attend the hearing. I also heard the judge refer to “Rule 89”, and subsequently read that this concerns “orders made without a hearing or without notice to any person”. It means, among other things, that the order must contain a statement of the right (of P, any other party, or any other person affected by the order) to apply for a reconsideration of the decision. I took this to mean that because the respondent Local Authority was not represented in court, the judge was required to make clear that they had the right to apply for the costs order to be reconsidered. This was also my first experience of attempting to follow technical details of Court of Protection proceedings with which I was not familiar and scribbling them down to try to decode them later. It brought home to me that a degree of legal literacy and research skill can be needed to truly engage with open justice in the Court of Protection, and that it can be necessary to “hold your nerve” scribbling down complex, unfamiliar details and hoping that you will be able to piece them together later.

An Activist’s Immediate Response – Responsibility and Opportunity

My thoughts immediately after the hearing can be divided into two categories: (1) to do with the operation of the Mental Capacity Act 2005 in practice; and (2) to do with being a public observer in the Court of Protection.

Justice Delayed

Concerning the first of these points, my overriding impression was a sense of outrage at the impact that the delays described were demonstrably having on P and on his quality of life. This “touched a nerve” as I recalled the times, when I had found myself waiting – caught in a trap of disability-related bureaucracy. And I felt a sense of righteous anger on P’s behalf. It seemed that the court hearing had played out (on a formal “stage”) a type of experience that will be familiar to most disabled people and our families and others who support us, but that can often feel isolating, and hidden from the rest of society. I have no way of knowing the cause of the delays in this case, beyond the judge’s comment that P was “not an easy person to place”. But I was prompted to reflect on my personal and professional experiences of often well-meaning and compassionately motivated professionals working as part of a system rooted in intransigence. I found that afterwards, as I went to buy lunch on Chancery Lane, I could not shake the sense of outrage at the possibility that bureaucratic delays may have led to a person with a progressive, degenerative condition having been robbed of the right to make a decision of such obvious importance to him (had the capacity assessment happened at the point when it was suggested he may still have had capacity), and then subsequently of the right to attend court and participate in his own hearing (on the three occasions when scheduled hearings were adjourned at the request of the Local Authority). Gladstone’s legal maxim that “justice delayed is justice denied” seemed frustratingly apt in this case, and it seemed that the laudable principles at the heart of the Mental Capacity Act 2005 – particularly that “all practicable steps” should be taken to promote the capacity of a person at the centre of a decision (s.1(3) MCA 2005), had fallen prey to the grinding gears of local government (in)action. My quest for “law in action” in the Court of Protection had begun with an exposition and interrogation of the consequences of inaction.

Bearing Witness

This leads to the second part of my initial thoughts on this hearing. I was left with the impression that as a public observer in the court, I had borne witness to the exposition of an injustice that would likely otherwise have been felt only by P and those immediately surrounding him. I had seen and heard the judge condemn as “staggering” the decision of the respondent Local Authority not to attend the hearing, and to use the court’s discretion to award costs against the Local Authority, departing from the “general rule”, as a way of further sanctioning this behaviour. While these may accurately be understood as responses to inferences of disrespect shown towards the court (as opposed to P), the judge’s references to P “wondering whether the court cares” meant that the authority of the court practically and symbolically ensured that P remained the central focus of the proceedings. As a consequence of this experience of “bearing witness”, I also felt a sense of responsibility – that I had seen and become aware of an aspect of social injustice, and that I should take this knowledge with me. I felt I could not just ignore or forget about it. I think this highlights the intensely personal, but also intensely public/political nature of the Court of Protection; and the reason why principles and practices of open justice and transparency are so intensely important.  At the centre of this hearing was a decision about where one individual should live. However, woven into this decision-making process are themes of social injustice – of delay and discourtesy – that are not unique to this individual, or to this case. In observing this hearing, I was able not only to see law in action, but to witness “on the ground” the experience of a disabled person that enabled me to “join the dots” with my own personal and professional experiences, and that informed and fuelled my activism. This meant that while I had no knowledge or involvement with P, who remained (quite rightly) anonymous to me, the knowledge I took from that, and the other hearings I observed during my month at the Court of Protection, have enabled me to “pay it forward” in shaping my activism through research and advocacy. In this sense, the enactment of mental capacity law in the Court of Protection embodies the maxim that “the personal is political”.

For disability rights activists, the transparency agenda affords us new opportunities to strengthen and inform our activism. So much of our experience of oppression – of discrimination, and of bureaucratic intransigence – happens behind the closed doors of doctors’ consulting rooms, or of local government offices. But here, in the Court of Protection, it is played out before the authority of the court, and now, before us – the public. Shining a light on collective injustice might be the first stage to challenging and changing it – if we can seize the opportunity.

Gill Loomes-Quinn is co-director (with Celia Kitzinger) of the Open Justice Court of Protection Project. She tweets @GillLoomesQuinn

Photo by noor Younis on Unsplash


[1] It is worth highlighting that the move to “remote justice” in response to the Coronavirus pandemic has widened the scope of ways in which P may access, and participate in, her or his court hearing(s) remotely from their home or hospital, with technology being harnessed routinely in order to facilitate such remote participation. (See, for example, the compelling account of “listening to Mr A’s voice” from his hospital bed, detailing the steps taken to ensure that P was able to participate on his terms in a hearing in which he was first respondent, in Kitzinger et al., 2020 – here).

[2] SI 2007 No. 1744 (L.12)

“I have reached a clear conclusion that AB lacks capacity to decide whether or not she should be tube fed.” – Commentary on Judgment

By Lily Wildman and Emma Christie – 28th August, 2020

The judgment in the case of AB, the anorexic woman refusing tube feeding, was handed down this week (Northamptonshire Healthcare NHS Foundation Trust v AB [2020] EWCOP 40 (16 August 2020))

We observed the final hearing (and blogged about it here) as well as one of the earlier ones (here). In this blogpost we reflect on Mrs Justice Roberts’ judgment and consider whether an opportunity was missed to recognise the limited circumstances where patients with severe and enduring anorexia nervosa may have the capacity to make decisions with regards to their nutritional treatment.

This case concerned a young woman (AB) with anorexia nervosa. In a previous hearing it had been established that AB had litigation capacity and could instruct her own legal team.  In the final hearing, the issue for the court was whether AB had the capacity to make decisions relating to her ongoing medical treatment – specifically, in relation to naso-gastric (NG) tube-feeding, which she wished to refuse.

In fact, the Applicant NHS Trust was not seeking to administer NG tube-feeding. Doctors employed by the Trust were in agreement that NG tube-feeding would not be in AB’s best interests. The key question was whether NG tube-feeding would not be administered because it was not in her best interests, or whether it would not be administered because she had refused it.  The issue of whether AB had the capacity to make her own treatment decision goes to the heart of her autonomy and the principles at the core of the Mental Capacity Act 2005 (the Act).

Mrs Justice Roberts decided that AB lacked capacity to refuse NG tube-feeding. She also held that NG tube-feeding would not be in her best interests. There is a presumption in favour of capacity ( s. 1(2) of the Act) and a lack of capacity cannot be established as a result of a condition which might lead others to make unjustified assumptions about a person’s capacity (s 2(3) of the Act).   In previous cases before the court (such as E, L, X, W and Z,[1]as discussed by Emma Cave and Jacinta Tan), the very nature of anorexia nervosa has been articulated by medical experts to mean that patients lack capacity to make their own decisions about nutrition because they are unable to weigh information about their nutritional treatment, due to their extreme aversion to weight gain.  We discussed whether this approach encroaches on the creation of a blanket presumption of incapacity for patients with anorexia, meaning that they are unable to have autonomy over decisions about their nutrition.

Mrs Justice Roberts recognises this general description of anorexia nervosa as applicable to AB, describing it as ‘the development of a profound and illogical fear of weight gain’.

It seems that the judge was unable to view AB as having capacity due to the ‘insidious’ influence that anorexia nervosa had on AB’s decision making, infecting AB’s reasoning to the extent that it was no longer capacitous in relation to decisions that might result in weight gain. We understand the reasoning of Mrs Justice Roberts, who was unable to see in the case before her an example of reasoning that was not critically impaired by an irrational fear of weight gain. This is despite her observation that “AB is an intelligent and emotionally responsive young woman who is both thoughtful, articulate and insightful in terms of the position in which she now finds herself.” (para. 46 of the judgment)

While every case turns on its own facts, similar expert views were expressed in A NHS Foundation Trust v X [2014] EWCOP 35 140 BMLR 41 and In Re W (Medical Treatment: anorexia) [2016] EWCOP 13 151 BMLR 220, decided respectively by Cobb J and Peter Jackson J (as he then was).  Both judges concluded that he individuals in those cases lacked capacity in relation to decisions about their illness and treatment. Therefore, previous case law falls overwhelmingly in favour of the medical assessment that anorexia nervosa patients lack capacity to make decisions about their nutrition due to their inability to weigh the relevant information. However, it is clear from the judgment and previous statements throughout the hearings, that Mrs Justice Roberts explicitly recognises that AB and her interests are what lie at the very heart of this case, and that her decision must not be based on a comparative analysis of case law.

As Cave and Tan argue:

 “The courts should take a patient-centred rather than clinician-centred approach to framing the decision that is subject to a capacity assessment. Whilst Anorexia Nervosa sometimes affects decision-making capacity in relation to nutrition, this does not preclude a finding that the patient has sufficient capacity regarding end of life decisions.” (p. 5)

Cave and Tan, 2017

Nevertheless, we feel a slight sense of disappointment as a legal opportunity may have been missed. We agree that AB may lack capacity to make decisions with regards to putting on weight. Given the severe and enduring nature of AB’s anorexia nervosa, it may be correct to argue that this condition means that she is unable to weigh information about putting on weight, as envisaged in s 3(1)(c) of the Act. However, it was agreed by the NHS Applicant Trust and Counsel for AB that NG-tube feeding would not lead to AB’s recovery from anorexia, nor was it likely to save her life (in fact it posed its own risks to her life via ‘refeeding syndrome’).  This was why NG tube-feeding was found not to be in AB’s best interests. Accepting this agreed position, then, we see the relevant decision facing AB as one about end of life care, rather than about nutritional intake as such.

A patient-centred assessment of capacity will flexibly interpret the decision about which capacity is assessed by reference to the patient’s views on the value of treatment. A patient who lacks capacity to make a decision about their nutrition may have capacity to determine that treatment is no longer worthwhile

We agree with the patient-centric approach advocated by Cave and Tan, and apply it to this case to argue that, in the context of a decision about palliative care, AB may indeed have the capacity to refuse consent to the NG-tube as (potentially) life-sustaining treatment.

The decision confronting AB could be characterised as choosing between a (possibly) shorter life of better quality (at home with her family and pets) and a (possibly) longer life – dominated by restraint and NG-feeding (which itself could cause death from refeeding syndrome, and which her medical team was unwilling to administer).  We did not see evidence presented to the court suggesting that AB lacked capacity to judge whether quality or duration of life was more important. The same point is made by Daniel Wang (cited in Cave and Tan), who argues that the narrow way in which the patient’s decision was characterised by the Court in an earlier case (A NHS Foundation Trust v X [2014] EWCOP 35)

 “… led to an application of the Mental Capacity Act 2005 that is incompatible with the UN Convention on the Rights of Persons with Disabilities because, based on a diagnosis only, anorexia nervosa patients were denied the right to decide where the balance lies between quality and duration of their own lives”

Wang (in Cave and Tan, 2017)

As in the case analysed by Wang, we suggest that the relevant decision for which AB’s  capacity assessment was required was not necessarily whether to refuse or accept nutrition, but whether to refuse or accept treatment that she considered futile. (p.14)

With these issues in mind, we suggest that rather than assessing AB’s capacity in relation to naso-gastric feeding which may (or may not) improve her physical condition, instead it may be more appropriate to assess her capacity to decide between continuing treatment which has a low chance of success and opting for palliative care. We tentatively suggest that with regards to this latter issue, there may be insufficient evidence to rebut the presumption in favour of capacity.

The outcome of the judgement is the same for AB, regardless of whether she is deemed to have capacity or not, since NG feeding is judged not to be in her best interests.  But a judgement in line with our argument would have given effect to her autonomy and recognised that it is her decision to seek palliative care, rather than a best interests decision made by the judge on her behalf.

Lily Wildman is an aspiring barrister who has justgraduated with a law degree from Durham University and will be commencing the Bar Practice Course in September this year.  During the COVID-19 pandemic, she worked as a Care Assistant at a Nursing Home, which honed her awareness of the safeguards surrounding adults who lack capacity. She tweets @lilymwildman

Emma Christie is an aspiring barrister who has recently graduated from Durham Law School and will be returning to pursue an MJur researching the Domestic Abuse Bill (2020).  She has experience volunteering with dementia patients. She tweets @emmaleechristie

Image by Iñaki del Olmo on Unsplash


[1] Re E (medical treatment: anorexia) [2012] EWHC 1639; The NHS Trust v L and Others [2012] EWHC 2741; A NHS Foundation Trust v Ms X (Official Solicitor) [2014] EWCOP 35; Re W (medical treatment: anorexia) [2016] EWCOP 13; Cheshire & Wirral Ptnr NHS FT v Z [2016] EWCOP 56.

When P is in prison

By Celia Kitzinger – 20th August 2020

It’s shocking to log on to a regional Court of Protection video hearing and to discover that P is attending the hearing from Her Majesty’s Prison.

Instead of the domestic clutter of a family home, or the familiar backdrop of a care home or a hospital, the person at the centre of this hearing (let’s call him Joseph) was seated at a table with a blank wall behind him in a stark institutional prison setting. 

He looks to be in his mid-twenties, but I later learn he’s still a teenager.  He seems shy, overwhelmed perhaps by what is happening, not particularly communicative but obviously pleased to see his mother, who has also joined the video-conference.

We’re all on line, waiting for the judge who eventually turns up half an hour late, apologising profusely that her previous case took longer than expected. 

During that half hour we are a captive audience as Joseph’s mother engages with her son, delighted to see him after a long separation: “Hello sweetheart!  I love you Joey, my little darling. I’m here Joey.  I’m always going to be here for you, fighting your corner.  You’ll be out soon, so don’t you worry.  I miss you Joey!  I love you so much!”  She asks the sort of questions any mother would ask of a teenage son she hasn’t seen for a while: is he eating well (“you look as though you are”), is he sleeping well  (“you need lots of sleep, a growing lad like you”) and does he get enough exercise (“just 15 minutes of walking around, that’s life in here, that’s just how it is”).  She passes on messages from the family (“Nan says hi”; “Tell her I said hi back”).  She talks about what might happen when he gets out of prison – suggesting a haircut and a shave.  “I look like Big Foot!” he says.    She repeatedly reassures him that “we’ve got your back”; “I’m your Mum and I’ve got your back for ever and ever”.

It turns out that Joseph, who has autism and mental health challenges, is in prison due to an incident where he assaulted a carer and caused criminal damage to his room.  According to his mother (with whom I have spoken twice since the hearing), social services called the police and said, in effect, “nick him and charge him” (her words).  This is – says his mother – a completely inappropriate response to someone with Joseph’s problems:

It’s just not right.  It’s wronger than wrong”, she told me.  “This shouldn’t be happening to Joseph or to anyone else like him.  He’s a beautiful soul. He has his problems because he’s autistic and has mental health problems, but that doesn’t mean you can treat him like an animal and just lock him up. 

Joseph’s mother

The main issue to be addressed in the hearing is where Joseph should live when he’s released from prison in ten days’ time. 

Unusually and – to me – again shockingly, it is Joseph’s mother (and not the Local Authority) who has brought the application to Court.  This is because the Local Authority were treating Joseph as someone who had capacity to make decisions for himself.  Joseph had refused services, challenged his autism diagnosis, and said he wanted to live in a flat on his own.  So the Local Authority had withdrawn all services.  They appeared to be content to leave him with no services on the basis that he had capacity to refuse them.

When it became clear that her son, left without services and living in a flat on his own, was involved with “bad people”, using illegal drugs, “smashing everything up”, “burning stuff”, and – once – assaulting her, his mother “begged for help”.  She was told Joseph was an adult now, and “we have to let him make his own mistakes”. 

They were telling me I was an over-protective mother, but I knew he would be dead if I didn’t get him the help he needed.  It’s been nightmare after nightmare.  They’ve really let my family down.  There have been years of failings in services. The system is broken.

Joseph’s mother

Her view is that “they wanted to say he had capacity so they could wash their hands of him”.

Joseph’s mother had never heard of the Court of Protection at the time she made contact with the Mencap Helpline.   I spoke (with her permission) to Julie Hinnigan, who is part of the legal team which supports the Helpline (now the independent legal charity called Access Social Care).   Julie Hinnigan told me:

 The Helpline team was very concerned about the safeguarding issues she was raising – and she had a number of reports indicating that he may lack capacity to decide about residence and care.  At best his capacity seemed borderline.  We get so many calls from parents in this situation: they’ve been fully involved in care, and then their child hits 18 and all that experience that the parents have of bringing up the child is just lost, and the focus is switched on to autonomy.  We wrote a very detailed letter outlining the safeguarding issues – self-neglect, he’d been a victim of cuckooing – and we said back then that there was a ‘risk of impulsive behaviour leading to police involvement’.  The reply was brief: ‘our social worker has assessed him as having capacity and we’re not going to disclose anything about that, we’re not going to undertake a safeguarding enquiry and we don’t agree that an independent capacity assessment is needed’.  End of.  So, then we had to find a legal firm willing to take it on.

Julie Hinnigan – Access Social Care

Once the court hearing started (with Joseph represented by Rhys Hadden for the Official Solicitor) it was apparent that some progress had been made, and a potential placement had been identified and agreed by the parties.  Counsel for Joseph’s mother (Katie Scott) summarised some of the problems ensuring the appropriateness of this placement.  Previous placements, she said, “have broken down – including in ways that have led to prison”.

When Joseph ‘kicks off’ the only response has been to call the police and then he ends up in the criminal justice system, and his mother – for obvious reasons – is extremely keen to ensure that doesn’t happen again.  He’s also been sectioned and spent time in hospital.  The Official Solicitor and [Joseph’s mother] have raised some concerns about whether this is going to be any more effective than previous placements.

Katie Scott – Counsel for Joseph

The proposed placement hadn’t been discussed with Joseph because there had been no available virtual visiting slots at the prison.  It did feel to me, as an observer, as though everything had been cobbled together at the last minute.  As with many court hearings, there was mention of a prior advocates’ meeting just before the hearing started, and the sense that agreements had been reached under the pressure of knowing that the case would shortly be before the judge.

An interim placement order was agreed, with follow-up arrangements in place to see how Joseph was getting on after the move, and another hearing in early September.  Meanwhile, his mother tells me that she Face-timed Joseph recently and he told her the placement was “really really good”.  He’d been baking cookies, making pizza, playing football and TV games and been to the beach!  She plans to visit (all being well on the public health front) for a family birthday in a few weeks’ time.

According to Julie Hinnigan, the failings in social services were in part due to lack of knowledge and support for autistic adults – especially those, like Joseph, who don’t also have a learning disability.  “Services for autism are often way behind specialist services for learning disability”, she says.  “People with autism like Joseph can present as very able and mask very well.  It can be genuinely very tricky for non-specialists to assess their capacity”. 

So far, at least, this story has a happy ending.  The Court of Protection has lived up to its name.  It has protected and ensured support for a vulnerable young man who is now flourishing in his new placement. 

The tragedy is that this situation arose in the first place – that he was left so much at risk, ricocheting between psychiatric hospitals and prison, without the support he needed. 

Celia Kitzinger is co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project

Image by Matthew Ansley on Unsplash

Questions of Capacity

By Louise Burrell – 19th August 2020

As an Adults Social Worker, I consider people’s mental capacity on a daily basis and complete formal documented mental capacity assessments probably once or twice a week. When financial management is involved this often results in paperwork for a Court of Protection (COP) application. I know the COP is there in the background to my work but once my paperwork is sent in, I have never given it much further consideration.   When the opportunity to observe a COP hearing arose I was very keen to see “what happens next”.

Having just been allocated a case concerning a lady in a care home who wanted to return to her own home, with a mental capacity assessment needed and a possible Section 21a appeal on the horizon, I was particularly keen to attend a Section 21a hearing.  With hearings only published late on the previous day, it was a very frustrating 4 hours that morning – sending emails and hoping for responses to attend whatever hearings I could find across England and Wales that could be identified as about a Section 21a appeal.  Attendance at 3 hearings was attempted: one was vacated, and I got no response from the other in time. I cancelled my request to attend the third one, listed for the afternoon, after Celia Kitzinger, co-director of the Open Justice Court of Protection Project came to my rescue and facilitated my attendance at Case No.11173747 Re DP before Mr Justice Hayden, from the Family Division of the Royal Court of Justice list.  She had attended the first hour or so of the hearing from its start that morning and, knowing of my interests and hearing of my frustrations, she emailed to let me know that I might want to join the hearing-in-progress via MS Teams.

The Question before the Court

This hearing was an appeal to a lower court’s decision on a Section 21a appeal.  Having missed the first hour or so, I was thankful that Celia was able to email a quick summary about DP (the person at the centre of the case) and the issues before the court.  DP was a gentleman in his 70s who, having lived in a care home for 16 years, wanted to move to an alternative care home to be closer his one and only friend outside of the care home environment.  He was not objecting to being in a care home as such. 

At the earlier hearing (on 6 May 2020 before DDJ Chahal QC), DP’s representative argued that there was insufficient evidence to rebut the presumption that P had capacity to make his own decision about where he should live.  The local authority had argued that there was indeed sufficient evidence to rebut that presumption, especially given that what was being requested was an “interim declaration” (under s48 of the Mental Capacity Act) and not a “final declaration” (under s15 of the Mental Capacity Act).  The judge in the earlier hearing had looked at the evidence on DP’s capacity – which was an assessment carried out by a doctor (not present at the hearing)  – and found various problems with the assessment, including that the doctor did not explain to DP why he was visiting him and asking questions, and the fact that the doctor did not discuss the specific decision in relation to which DP’s capacity was being assessed,  i.e. should he stay in this care home or move to another one.  Despite finding fault with the capacity assessment, the judge had concluded nonetheless that the quality of the evidence was sufficient for an interim declaration that (in the wording of s48) “there is reason to believe that P lacks capacity” to make the relevant decision.

My first thoughts were: “why on earth is this before such a senior judge? If he has capacity to make a decision about where to live then, great, get on with the move that’s he is requesting;  if he hasn’t got that capacity, then update your mental capacity assessment and get on with a best interests meeting so the gentleman has at least an answer, be that positive or negative”. 

For DP, the issue was whether or not he could make his own decision to move to another carehome so as to be closer to his friend.  For the Court, the issue was what the court should do if the capacity evidence in the DOLS authorisation wasn’t good enough to rebut the presumption of capacity.

The starting point for the judge at the previous hearing was Re F in which HHJ Marshall QC, discussing the capacity test and differences between an interim declaration and final declaration stated:

The “presumption of capacity” reinforces the general approach of the Act, that “P’s” basic right to have the power to make decisions for himself is to be respected and protected, and can therefore only be displaced by sufficient evidence establishing that he does not have capacity in the relevant respect. However, such a finding is what ultimately grounds a formal declaration under s15 of the Act, and s48 expressly confers powers on the court to take steps “pending” the determination of that question. It follows that the evidence required to found the court’s interim jurisdiction under this section must be something less than that required to justify the ultimate declaration. (Re F [2009] EWHC B30 (Fam)). 

In this case DP, acting via his Accredited Legal Representative with Victoria Butler Cole as his counsel, was challenging the fact that he remained deprived of his liberty despite the manifest shortcomings of the mental capacity assessment that were identified by the judge.  His argument was that if the court is not satisfied that the mental capacity requirement was met, it should either terminate the standard authorisation under the Deprivation of Liberty Safeguards, or vary it to a very short period (the time period of perhaps 2 weeks was mentioned) while a better mental capacity assessment is elicited.  What should not happen is what has happened in this case: it was turned into a standard welfare case, which means considerable delay (now nearly a year) in arriving at a final declaration of capacity.   Basically, the argument was that if the presumption of capacity has not been rebutted, the court cannot make even an interim decision to deprive DP of his liberty.  As the judge said, “It is deeply troubling in a mature democratic society if we are restricting people’s liberty with no foundation to do so.”

Human Rights

Although not quite the learning I had envisioned, observing the discussions between the judge and the legal representatives was very enlightening and has given me a much broader understanding of the law, and in particular the application of human rights.  I had already identified in recent weeks a personal knowledge gap in the application of human rights in my work.  Human rights, like the role of the Court of Protection, have been “lingering in the background” but in the hubbub of my daily practice rarely got real consideration.   Every aspect of the 5 hours of discussions I observed repeatedly returned to consideration of Article 5 (right to liberty and security) and Article 8 (respect for family and private life).  (I have since found the Equality and Human Rights Commission Publication GD.13.401 very helpful). 

The judge repeatedly stated that we should be guided by the principles of other Articles such as Article 6 (right to a fair trial).  Consideration should be given to P being able to access an independent and impartial hearing:  this should be within a reasonable time, without excessive procedural delays, with good conduct and diligence by all parties.  It came to light than DP may have a future claim for damages for unlawful deprivation of liberty.

Mental Capacity & DOLS assessments

It was very worrying to hear the opinions of both judge and legal representatives when discussing mental capacity assessments that are presented to them.  

  • They are often “poor”, “bad”, “inadequate”, “not sufficient”, “unsatisfactory”  or “perfunctory”.  Declarations of incapacity might be made “on the thinnest of evidence”.  
  • The judge commented on “little insights into capacity” that can be identified from very personal touches and day to day information such as a person’s actions, behaviours, likes and dislikes etc. but which are not evidenced in assessment documents. He specifically asked about what job DP had done before he had the strokes (in 2000 and 2003) that led to his residence in his current care home. (He was a computer programmer.)
  • The judge said that the doctor who carried out the capacity assessment “had not explained to [DP] what he had come to assess” adding, “that’s fundamental error” because it  does not give someone the  opportunity to prepare for the assessment or create for them  the best opportunity to provide evidence they can understand, retain, weigh and communicate the relevant decision
  • There are often instances where it appears that the assessor has not taken all reasonable and practicable steps to support the person’s capacity
  • It is not always clear that the assessment is based on a presumption of capacity that has been “displaced” (this is a “fundamental civil right”).
  • In some cases, as here, the assessment may not be assessing the right issues, and therefore missing the mark.  In this case, DP was not asked specifically about whether he understood and had weighed up the pros and cons of a move to another care home.
  • Assessments may be rooted in a paternalistic /protectionist approach aimed at protecting P.  This is “missing the point”.  One should “not eclipse or occlude the right of people to assert their own autonomy for good or bad”
  • There is a possibility of discriminatory practice due to assumptions related to diagnosis. 
  • There is an obligation to avoid unnecessary delays

Similar comments were made about the DOLS reports and the paperwork they considered “not fit for purpose”. If the work of trained professionals is in many cases inadequate, it will be interesting to monitor the situation when the Liberty Protection Safeguards are introduced and care home managers will share the responsibility. 

For me as a practitioner completing mental capacity assessments, and considering training as best interests assessor, it was rather worrying listening to these criticisms.  The judge did comment when he said this is “not surprising considering the volume and pressurised circumstances in which they are undertaken” and that “a pro forma is being used”. These comments have made me take an even more critical look at my own reports and also I have now developed the confidence to insist on multiple visits if required and enough time to complete the assessment to the best of my ability.  Having recently chaired a peer discussion group on the theme of “all practicable steps under COVID restrictions” my colleagues are all finding it difficult to maintain the standards they would like in the current working environment. 

Using a Video-Platform

In recent months, having had to attend or chair meetings on video-platforms, it was useful to observe the judge at this hearing.  I have not yet, under COVID restrictions, needed to hold a remote best interests meeting necessary to gather information and opinions of multiple professionals in order to come to a decision.  Mr Justice Hayden said that, after many months into the COVID enforced ways of working, relying on telephone conference calls, which had been the case in the initial hearing, were unsatisfactory. He felt video calls and being able to see each other were important and should be “standard practice”. 

Mr Justice Hayden was critical of DP’s care home who had been unable to make arrangements for a video call conversation (as opposed to a phone call) with him.  The judge described this as “disappointing” and said: “All creative measures should be employed to enable people in care homes to have access to their family face-to-face. I’m a little bit concerned that this care home hasn’t mastered the video-conferencing platform. Can you later get someone in your team to query this?”   I found this very reassuring because during the hearing I observed, the details of DP’s situation were not much discussed.  All parties were well acquainted with this information through the previous hearing and documents I had not seen and time was spent on the technicalities of the law.  Nonetheless it was obvious that DP remained central in the judge’s thoughts and he was making an additional effort to talk directly to DP himself. 

During the hearing I noticed that there were long periods of silence during which Mr Justice Hayden appeared to be thinking carefully – processing information, gathering his thoughts and considering his wording.  My own experience of video-conference meetings is hurriedly writing inadequate notes, in a kind of short hand that I’m confident I will understand later – and then don’t! After observing this hearing I will have no problem in asking meeting participants to pause a minute whilst giving me time make better records. 

Outcome

I was going to title this section “Conclusion”, but that would be inappropriate. At the close of this particular hearing DP still did not have a decision.  With the capacity assessment deemed inadequate, the previous judge not having addressed the key question of the Section 21a appeal and some administrative errors, Mr Justice Hayden concluded that DP’s case needed to be reheard “expeditiously” before a different district judge – so really, starting all over again.   With my very limited knowledge of the legal process, the process so far appears to be an appalling waste of resources with the time delays very unsettling for DP and detrimental to his wellbeing.  On a positive note, shortfalls have been acknowledged and are now being addressed.  I do hope that by the time the next heating is arranged a new – and better – capacity assessment will have been completed in preparation and that those responsible will not be waiting for the hearing to say a new one is needed. 

Would I observe again ?—- Yep!

I have found the whole observation experience very beneficial.  The googling, looking up of legislation, reading up of quoted case law – both during and after the court attendance – has given me a crash course in legislation, that I now realise, I only thought I understood. Listening to a talk about how the Mental Capacity Act is implemented in the courts is one thing – actually observing it as it happens is very different! 

Human Rights has become real and applied.  I can see more clearly that down at the coal face, we have real opportunity to empower our service users.  And based on what I have observed, I have confidence that if the situation of our service users  should ever require consideration by the Court of Protection,  the judge will ensure their right to participate is facilitated and their right to self-determination, if at all possible, is respected. 

I did not find the process of being able to attend a hearing easy.  Fortunately, this was how I chose to spend my day off.  Being able to respond immediately to an email, being able to set aside anything else you might have on to attend a hearing starting in 20 minutes, on an unknown topic and of an unknown time duration, is not compatible with a busy day’s work with deadlines looming.  

But by gum, I’ve learnt so much more than from the mandatory eLearnings I have recently completed.  Having got to grips with the legislation, I’m now on the lookout for a court hearing before a district judge so as to be able to observe the discussions and decision making regarding capacity, autonomy etc that challenge me on a day to day basis.

Louise Burrell is a locum social worker currently completing assignments in Local Authority Adults social care teams. 

A Patient with Severe and Enduring Anorexia Nervosa: The need for a declaration and the capacity to make a decision

By Lily Wildman and Emma Christie – 18th August 2020

The judgment has since been published here:Northamptonshire Healthcare NHS Foundation Trust v AB [2020] EWCOP 40 (16 August 2020)

[N.B. This is an account of a different perspective on the hearing discussed by Clare Fuller in her blog of 17th August 2020, here – Bearing Witness: Anorexia Nervosa and NG Feeding]

Today (Friday 14 August 2020) we attended another (remote) hearing in the Court of Protection concerning AB.  The issue before the court was whether a young woman (AB) with severe anorexia nervosa has the capacity to refuse consent to naso-gastric (NG) tube feeding. (Last week’s hearing, as touched upon in our previous blog post, concerned whether AB had litigation capacity to instruct her own legal team, deciding this in the affirmative.)  In addition to the issue of capacity, this blog post will consider whether decisions which doctors would not in conscience be prepared to carry out, and where parties are in agreement as to the outcome, should continue to go to court in order to seek a declaration.

The Need for a Declaration

If doctors won’t in conscience do it then they shouldn’t be coming to court.

Ms Katie Gollop QC: (counsel for AB)

The applicant in this case (the NHS Foundation Trust) sought a declaration from the court that: a) AB lacks capacity to make decisions about treatment relating to anorexia nervosa and,  following that determination, b) it is in AB’s best interests not to receive any further active treatment for anorexia nervosa. It was clarified in the proceedings that “active treatment” refers specifically to NG tube feeding as no other proposed treatment would help given the severity of AB’s condition. The respondent’s (AB’s) argument was that she does have capacity to make that decision for herself (and her decision is not to receive NG tube feeding).

In this section we consider whether it is necessary for the court to make a declaration. In Re Y (2018) (UKSC 46) Lady Justice Black considered whether it was necessary for cases considering the removal of Clinically Assisted Nutrition and Hydration (CANH) from patients with a prolonged disorder of consciousness, and the removal of life-sustaining treatment more generally, to go to court for a declaration. In Re Y, the patient had been diagnosed as being in a vegetative state. He required CANH in order to prolong his life. The family and clinical team were in agreement that it was not in Y’s best interests to continue receiving CANH and instead of applying to the Court of Protection to seek a declaration that it was lawful to withdraw it, they had applied for a declaration that it was lawful to withdraw treatment under these circumstances without recourse to the court.  The judge granted this  and the Official Solicitor brought an appeal to the Supreme Court (leapfrogging the Appeal Court since the matter was urgent). The Supreme Court hearing went ahead despite the fact that Y died of infection in the meantime.

At paragraph 126 in the Supreme Court judgment, delivered by Lady Justice Black,  it was held that there is no mandatory requirement to seek a declaration where the removal of CANH or life-sustaining treatment is concerned. In dismissing the appeal brought by the Official Solicitor, Lady Justice Black stated that: “if the provisions of the M[ental] C[apacity] A[ct] 2005 are followed and the relevant guidance observed and if there is agreement upon what is in the best interests of the patient, the patient may be treated in accordance with that agreement without application to the court.” In addition to setting out this general principle, Lady Justice Black listed three categories of case where, whilst not a legal requirement to do so, it may be in accordance with “good practice” to apply to the court for a declaration. Firstly, where the conditions in the MCA are not clearly satisfied, secondly, where there is a division of medical opinion and thirdly, where the family members disagree with what is in the best interests of a patient.

Applying Re Y to the facts of AB (today’s hearing,) there is no legal requirement for a declaration to be sought. Whilst not providing NG feeding to AB will ultimately result in her death, this is not in and of itself a justification for bringing a case to the court. In addition to this, the provisions of the Mental Capacity Act have been complied with (see below) and the NHS Applicant Trust and the family members support the decision that NG tube feeding is not in AB’s best interests. Indeed, additionally, at the end of today’s proceedings, counsel for AB, Ms Katie Gollop QC, sought an assurance to allay AB’s fears that the judge might require her to  receive  the proposed treatment:  Lady Justice Roberts assured her that she would not and this was not an assurance which the NHS trust sought to oppose. Therefore, with today’s hearing beginning and ending with NG feeding not being a proposed treatment, it begs the question whether this case needed to come to court for a declaration.

On the one hand, given that an agreement that NG tube feeding was not in AB’s best interests, it could be considered to be somewhat straying into the hypothetical to consider a proposed form of treatment which the clinical team for AB seems uncomfortable in providing. In his evidence, Dr B stated that in NG tube feeding in this case “the gain does not justify the input.” Indeed, if this is the finding and given AB’s past experiences of the proposed treatment (considered fully below), it seems odd to be discussing this treatment at length and in such a distressing environment.

However, whilst the best interests question was agreed by the parties, the authors are in agreement with counsel for AB, Ms Gollop QC, who states that notwithstanding this, “the Trust acted properly and correctly in bringing the application.” Firstly, AB herself in her witness statement emphasises the importance of having autonomy over the decision to refuse NG tube feeding. Balancing paternalism with a patient’s autonomy is central to the provisions under the MCA. As Herring et al. argue, “each person should be free to develop and live out their version of the good life.”[1] We argue that recognising the decision to refuse NG tube feeding as AB’s decision would formally recognise her autonomy to make decisions which are respected and followed by medical professionals. A further justification for bringing this case to court, as raised by Ms Katie Gollop QC is that, given the likelihood of cardiac arrest or further medical complications as a result of AB’s condition, it is necessary to ensure that medical professionals outside of the applicant Trust would not attempt to administer NG tube feeding. Therefore, we agree with counsel for the respondent that this is illustrative of a case where a declaration should be sought.

Although Lady Justice Roberts has not yet made a finding as to AB’s capacity (or lack thereof), it is submitted that, whilst not a legal requirement, this case is illustrative of where it may be “good practice” to seek a declaration from the court because the key issue of AB’s capacity was disputed. This central issue concerns AB’s autonomy; her right to make her decision to refuse NG feeding. The submissions with regards to capacity are considered fully, below.

The Issue of Capacity

Whether AB has capacity or not to refuse NG tube-feeding was the key issue in today’s hearing. S 1(2) of the Mental Capacity Act 2005 (MCA) states that there is a presumption in favour of capacity.  This can be rebutted by reference to the criteria set out in ss2 and 3. In order for the presumption of capacity to be rebutted (and for a person to be deemed to lack capacity to make a specific decision), they must be assessed as being unable to understand, retain, and/or weigh the information required to make a decision (and to communicate their decision e.g. vocally, via sign language, or other means), and this inability must be due to an impairment or disturbance in the functioning of the mind or brain.

Where a patient has capacity to make the relevant decision, the Court of Protection has no jurisdiction. The issue of capacity was at the heart of the expert witness evidence from Dr B who had been part of AB’s clinical team for a number of years. In his evidence, he submitted that he believed AB failed the capacity test under ss2-3, on the basis that she was unable to weigh the information related to the NG feeding (S 3(2)) because she finds it so “aversive”.  He claimed that the reason why she found it so aversive was “partly or wholly as a result of not being able to allow herself to have an increase in nutrition which is a direct consequence of her mental disorder”.

The capacity of patients with severe and enduring anorexia nervosa to make decisions about their own nutrition is a contentious area. Emma Cave and Jacinta Tan in their article Severe and Enduring Anorexia Nervosa in the Court of Protection in England and Wales,’ state that courts should take a patient-centred rather than clinician-centred approach when considering capacity.  It is possible to see that, in some cases, anorexia nervosa may affect the capacity of the patient to make decisions in relation to their nutrition. However, this assessment should be case specific and not applied as a general presumption. Further, even where P does lack capacity in relation to their nutrition, it does not, necessarily, mean that the patient lacks capacity in relation to all medical decisions.

The skeleton argument of the respondent (AB) identifies five cases where individuals living with anorexia nervosa were all found to lack both litigation capacity and capacity to make the relevant treatment decision. These were the cases of E, L, X, W and Z, all between 2012-2016.[2]   In the present case, however, it has already been established that AB does have litigation capacity. Further, Ms Katie Gollop QC used the case of Re E, to refer to a passage from the judgment of Peter Jackson J (as he then was) which discusses the potential Catch 22 situation that can arise in relation to capacity and anorexia. This Catch 22 is the claim that the nature of anorexia nervosa directly affects whether P will decide in favour of proposed treatment, with a preoccupation on whether weight-gain will result. This reasoning has caused medical experts to conclude patients lacked capacity, as the very nature of anorexia nervosa, it was argued, precludes patients from weighing the information with regards to treatment options.

Indeed, in today’s hearing, Dr B submitted that AB was holding onto the ‘overvalued idea’ of avoiding weight gain, resulting in an inability to ‘weigh things appropriately’. In AB, Ms Gollop QC described this argument as ‘circular’. Indeed, it does appear that, to use the nature of anorexia nervosa to preclude capacity, may come close to a blanket presumption as to whether any patient with the condition can have the capacity to refuse their consent to treatment.

We consider this to be a disconcerting idea, as it assumes that there are no capacitous reasons that patients could give to refuse treatment, or at least, that patients are inextricably bound to the voice of their illness in all aspects of their decision-making. This line of reasoning was rejected in the case of Re SB, where experts asserted that P could not weigh the information in such a way that it be said she had capacity to consent to an abortion. In spite of this, P was indeed able to provide rational reasons for not wanting to have the child. P was held by the judge to be able to consent to the termination of her pregnancy on the basis of this ability to provide rational reasons for going ahead with the abortion.

After hearing the statement of AB, we are unconvinced by the idea that anorexia nervosa patients are unable to extract their decisions from the voices of their illness. In her statement AB wrote that, ‘my illness is a part of me, but it is not all of me; it does not define me, and that is where I think that Dr B is wrong’. In her statement, AB was able to lucidly express a number of reasons why she wished to refuse treatment. Crucially, none of the reasons she gave related specifically to a fear of putting on weight. Instead, they refer to the effect of past experience of force feeding on AB, the risks of tube feeding, futility of NG tube feeding and the desire to focus on her quality of life.

AB gave a harrowing account of her past experiences as an in-patient. She started by saying

I have been held down by my legs with a tube thrust forcibly up my nose. I have had food inserted through a syringe so quickly and violently that I was sick.

AB

It is clear that the treatment has been highly traumatic, both physically and emotionally for AB, and she does not wish to repeat such experiences. In addition to AB’s negative experiences in the past, she has also been able to weigh the benefits and drawbacks of the treatment, stating

I do not want to die, and I do understand what the illness is doing to me, and the consequences of continuing down the path that I am on. Similarly, though, I also understand what the physical risks, as set out by Dr B, of forcibly feeding me now are, and I wonder in addition whether in fact the mental stress of being treated against my will would kill me.

AB

The medical evidence of the case sets out life-threatening risks of tube feeding. In addition to this, AB has considered that there is unlikely to be a lasting benefit to her health if she is tube fed: this is because while she is able to gain weight in the short-term, this weight has never been able to be maintained in her 13 years of suffering from anorexia nervosa.

Finally, the importance that AB places on her autonomy is undeniable and goes to the heart of the principles under s 1 of the MCA, which holds that a person must be presumed to have capacity, respecting the person’s rights and freedom of action. In her statement, AB expresses:

I have been helpless – and watched helplessly – as every aspect of my life, every aspect of my being, has been controlled by those with the power to do so’

AB

Rather than seeing a voice controlled by her condition, we see an articulate consideration of her quality of life, a consideration of the long-term prospects of treatment and an expression of her personal autonomy. The following words of AB ring in our minds as we wait for a judgment to be handed down in the coming days:

The decision not to undergo further inpatient treatment is mine. The illness is a part of me, yes. It is a voice, yes. It is a bullying and powerful voice, yes. But the voice making this particular decision is mine.

AB

The judgment for this hearing will be handed down within the next week. If AB is found to have capacity by Mrs Justice Roberts, this will be the first case in England and Wales since 2012 in which a patient with severe and enduring anorexia nervosa is found to have capacity to make her own decisions about nutrition.

Lily Wildman is an aspiring barrister who has justgraduated with a law degree from Durham University and will be commencing the Bar Practice Course in September this year.  During the COVID-19 pandemic, she worked as a Care Assistant at a Nursing Home, which honed her awareness of the safeguards surrounding adults who lack capacity. She tweets @lilymwildman

Emma Christie is an aspiring barrister who has recently graduated from Durham Law School and will be returning to pursue an MJur researching the Domestic Abuse Bill (2020).  She has experience volunteering with dementia patients. She tweets @emmaleechristie


[1] I. Goold and J. Herring, ‘Great Debates in Medical Law and Ethics.” (Palgrave, 2014)

[2]  Re E (medical treatment: anorexia) [2012] EWHC 1639; The NHS Trust v L and Others [2012] EWHC 2741; A NHS Foundation Trust v Ms X (Official Solicitor) [2014] EWCOP 35; Re W (medical treatment: anorexia) [2016] EWCOP 13; Cheshire & Wirral Ptnr NHS FT v Z [2016] EWCOP 56.

Photo by Thiago Cardoso on Unsplash

How to Find a Court of Protection Hearing to Observe

By Celia Kitzinger – 17th August 2020

There are various ways for you to find a hearing to observe, if you are interested in seeing law in action in the Court of Protection. Obviously, you can simply pick one of our “Featured Hearings” from the home page of our website: we update them every evening for the following day.

Or you can scroll through our tweets the evening of the day before you want to observe a hearing. There are usually many more there.

This is a brief guide to finding hearings for yourself, if you don’t want to rely on us to tell you what’s available.  There are several reasons why you might want to find hearings yourself:

  • We only reproduce a selection of what’s listed – somewhere between 3 and 10 usually.  There are around 30 hearings every day, so if you can find them yourself, you will have more choice.
  • The hearings we’ve selected may not be at a time of day you can observe (though we do try to include both morning and afternoon hearings).
  • The hearings we’ve selected may be vacated or adjourned – in other words, when you ask to observe them, you are told they are not happening – so you may need to find another one quickly.  (Hearings can be vacated right up until the last minute before the hearing, if the parties can come to agreement without the need to involve the judge.)
  • We only post hearings the day before.  If you want a longer lead-in time, you can sometimes find hearings listed up to a week in advance in CourtServe (see below) and organise your time so as to be available then. (The downside is that they may well be vacated before the date they are listed for.)
  • You might want to observe a hearing on a specific issue (such as DOLS, or Finance Deputies, or where P should live). We might not have selected a hearing dealing with the issue you are interested in – so it can be useful to check the lists yourself for what’s available that day. (If you are interested in a specific issue, you are most likely to be successful if you check the Court of Protection Daily Cause List – see (2) below).
  • We’re sometimes asked for hearings before a specific judge, or in a particular court. We don’t have the resources to do this for everyone, but if you know how to locate hearings yourself, you can find them!

There are three websites where you can find lists of hearings

1.  Family Division Daily Cause List

This lists hearings in the Family Division of the Royal Courts of Justice.  The list is published every afternoon – usually around 4.30pm -5.00pm – for hearings on the following day. 

If you bookmark this page and check it regularly you will find hearings in the Court of Protection listed – but not every day. Most of the hearings on this list are NOT hearings in the Court of Protection (and they are not open to the public).  But the same judges do sometimes hear Court of Protection cases.   These hearings are before the most senior judges in the Court of Protection and they are typically assigned the most “complex” or “serious” cases.  You may recognise the names of some of the judges:  Mr Justice Hayden is one of them.

There’s no information on this list about the issues that will be dealt with in the hearing – you’ll only discover this once the hearing begins.

There’s also no time estimate provided on this list.  I once requested to attend a hearing, having allotted a morning for it, only to learn once I received the link that it was scheduled to last for three days.

You can find Court of Protection hearings on this list by looking for the words “Also sitting as a Judge in the Court of Protection” next to a judge’s name, and the letters “COP” before the case number. For example:

Before MRS JUSTICE THEIS
Also sitting as a Judge of the Court of Protection
Wednesday, 12 August, 2020
At 09:30 AM
Applications in Court as in Chambers
FD20P00480  MS Teams Hearing
At 10:30 AM
Applications in Court as in Chambers
HEARING NOT OPEN TO THE MEDIA
ZC194/19  MS Teams Hearing
At 02:00 PM
FOR HEARING IN OPEN COURT
COP 13632000 Re: RD  MS Teams Hearing

This judge, Mrs Justice Theis, has various hearings in the morning that are not  Court of Protection hearings (and not open to the public) and then a Court of Protection hearing at 2pm “in open court” (i.e. the public can attend).  The case number is 13632000, and the case name is “Re: RD” (these are usually the initials of the person at the centre of the case).  It is a Microsoft Teams hearing (i.e. via a video-platform, rather than by phone as many still are).  There is a single email address for all hearings listed on this page (rcj.familyhighcourt@justice.gov.uk ).  It’s provided towards the top of the page. 

2.  Court of Protection Daily Cause List

Despite its name – which makes it sound pretty comprehensive – this lists only a small selection of Court of Protection hearings every day: those held from the London-based Court of Protection on the 5th Floor of First Avenue House, 42-49 High Holborn, London WC1V 6NP.  There is one email address (and phone number) for all hearings on this list and it’s provided near the top of the page, where it suggests contacting the Judicial Support Team on 0207 4218718 or courtofprotectionhearings@justice.gov.uk.

This list is the most user-friendly option for public observers, because it provides helpful information including the issues the hearing is going to address and a time estimate for the hearing.   It’s worth bookmarking and checking it every day if you’re interested in observing hearings.

The list is published every afternoon – usually around 4.30-5pm – for hearings on the following day.  There are usually 3 – 6 hearings listed on this website every day, sometimes more, and sometimes none at all.

Here is a sample entry:


In The Court of Protection, 5th Floor First Avenue House, 42-49 High Holborn, London WC1V 6NP
Wednesday 12 August 2020
Before Senior Judge Hilder
Start Time  Case Details

10:30AM   13422792 Directions where KS should live and the care he should receive. Private hearing – remote hearing. T/E 1 Hour
11:30AM   13544953 EW. To consider a) application for authorisation of deprivation of liberty. Private hearing – remote hearing T/E 1 Hour

On this date, Senior Judge Hilder (another judge whose name you might recognise – she often gives talks about the Court of Protection at conferences) has two hearings.  The one at 10.30 am (Case number 13422792) concerns someone with the initials “KS” and the hearing is about his residence and care.  The one at 11.30 am (case number 13544953) concerns EW and an application for a Deprivation of Liberty.  Both are ‘remote’ hearings (at time of writing, this usually means telephone hearings from this list) and both have a time estimate (T/E) of one hour.  This list is the only one of the three that systematically provides both a list of issues to be heard by the court and a time estimate

You will notice that they both say that they are “private” hearings.  When hearings are listed as “in open court” or “open to the public” or “in public”, this usually means you are free to attend but you will need to gain access.  When hearings are listed as “private” you can usually attend them (except for Dispute Resolution Hearings [DRH] – these you can not attend) but you need to ask the judge’s permission and give a reason why you want to attend (e.g. “as a social worker, to understand better how decisions about capacity and best interests are made by the court” or “as a law student, to observe the workings of the court”, or “as someone whose family is involved in a forthcoming COP hearing, to observe someone else’s experience in court to give me confidence going forward to mine”, or “as a member of the public wishing to observe Open Justice in the Court of Protection”).   There is no reason to avoid requesting access to hearings simply because they are labelled “private” or “public not admitted”.  In fact, I have discovered that often judges do not know how the case they are hearing has been listed, and I have sometimes been told that a case listed as “private” should in fact have been listed as “public” and once that a case listed as “public” should have been listed as “private”.

If you only want to observe one hearing – and especially if you have a preference as to the issues that the hearing will address – this is probably the best website for you to use.

3.  CourtServe

Courtserve is a live court listings service by Courtels Communication Ltd under contract to Her Majesty’s Court and Tribunal Services.  It lists all the hearings in all the courts across England and Wales.  You will need to register to use it (with a user name and password) but it is free to use.

For your purposes, you need to locate the section called “Court of Protection lists” under the “County Courts” tab.   It is rather oddly located in the list of geographical place names – between Colchester and Coventry.  Under the heading “Court of Protection”, you’ll find a list of towns and cities where hearings are being held (and the dates in the column on the right).  This is very useful if you particularly want to observe a hearing in your geographical area.

The Court of Protection has seven regional ‘hubs’ in addition to the London office.  These are based in:

  • Leeds (the North East-East Regional Hub)
  • Newcastle (the North East North Regional Hub)
  • Manchester (the North West Regional Hub)
  • Reading (the South East Regional Hub)
  • Bristol (the South West Regional Hub)
  • Birmingham (the Midlands Regional Hub)
  • Cardiff (the Wales Regional Hub).

The postal addresses, email addresses and phone numbers for the regional hubs are provided on this webpage

Until a few months ago, requests to observe a hearing had to be sent to each court separately, but improvements are underway and now, requests must go to the regional ‘hub’, rather than to the individual court where the hearing is scheduled to take place.  So, for example, a request to observe a hearing in Swansea should be sent to the Cardiff email address; a request to observe a hearing in Oxford goes to the Reading email address; a request to observe a hearing in York goes to the Leeds address.  The system is still under development and there are some problems with the email addresses provided at present – some have only the address at which the judge is sitting and not the regional hub address; some have both addresses!  You should also be aware that some regional courts have entered the regional hub address incorrectly (with typos) so that when your email will bounce back as undeliverable.  You can check the correct email address on the webpage here.  This is no doubt a temporary problem as the system is being updated, but it helps to be aware of it.

The information provided by the different courts is very variable.  Sometimes you’ll have nothing more than a case number and time.  Sometimes there isn’t even a case number – it will just say “Court of Protection hearing” or “Re. AB” or “private hearing”.  Note that the same principles apply for “private” hearings listed in CourtServe as on the Court of Protection Daily Cause List above: you need to ask permission of the judge and give a reason if you want to attend a “private” hearing.  On 5 August I was given permission to observe a hearing that was listed like this:

2pm 11578958 NG: IN PRIVATE – TO BE HEARD REMOTELY – NOT OPEN TO THE PUBLIC – DIRECTIONS – T/E 2 HOURS

It is unusual to have any information about either the issues to be addressed in the hearing, or a time estimate for the hearing (although either or both are provided occasionally, as in the example above).    There is sometimes (but not always) information about whether a hearing is “Remote” or “Attended”/”In person”.  Quite often this is conveyed by naming the platform to be used (e.g. “Telephone” or “BT MeetMe”, or “Microsoft Teams”, “Skype”, “Zoom” or “CVP” – Cloud Video Platform).

You should also be aware that currently only about half of the Court of Protection hearings listed across England and Wales actually appear under the “Court of Protection” heading.  The other half (or more) are scattered throughout the list under the names of individual towns or judges.

I did a comprehensive search through CourtServe on three days in the first week of August 2020 just to see how many hearings I could find. 

  • On 3 August I found 19 hearings only 11 of which were under the COP heading. 
  • On 4 August I found 21 hearings, of which 10 were under the COP heading. 
  • On 5 August I found 37 hearings of which 16 were under the COP heading.

So currently it’s averaging out at about half of all hearings appearing under the Court of Protection tab.  If you are looking for COP hearings in a particular geographical locality (other than the South East), this does mean for now that you will need to click through the list on the names of individual towns and cities to find COP hearings that have not been entered under the COP tab. This is a massive improvement on a few months ago when there was virtually nothing under the Court of Protection tab – and I can see signs that it is improving week by week.  Some regional hubs – in particular the South East Regional Hub – now put (virtually) all their hearings under the Court of Protection tab. 

CourtServe was developed for use by lawyers and it probably works well for a barrister or solicitor who simply wants to know when their hearing has been listed and can type the case number into the search facility.  For would-be public observers looking for Court of Protection hearings though, it’s a bit of a nightmare as soon as you venture outside of the Court of Protection tab. 

There is no standard presentation format.  You can usually recognise COP hearings by their case number: they almost all consist of 8 digits beginning with 1 and no letters of the alphabet as part of the case number  – except occasionally a ‘T’ at the very end.  (I’ve tried to find out what the ‘T’ means and nobody knows.)   Sometimes it may appear that the number begins with letters because the initials of the person the case is about are given before the case number, rather than after it (which is more usual).  Watch out also for the “AM” or “PM” from the time of the hearing, which sometimes appears ‘attached’ to the beginning of the case number.  Sometimes they also say “Court of Protection” or “COP” by them. 

Here are some examples taken from the lists 3-5 August 2020: none of these appeared under the COP tab and none included the information that the judges were sitting as judges in the Court of Protection. 

a)  10.00AM  COP 13533327 Directions 1 hour via CVP

b)  2.00PM 1360178T BB

c)  2.00PM Re: B – HEARING – NO MEDIA ATTENDANCE ALLOWED – ATTENDED

d)  3.00PM 13559791 GJD DRH 1 hour

e). 3.00PM  BT meet me 13559543

You should be able to see that four of the five have 8-digit numbers beginning with 1 (in fact 135 and 136 are very common opening digits).  Two of them also provide the initials of the person at the centre of the case (in (b) it’s “BB”; in (d) it’s GJD).  There are lots of other initialisations in these entries which will become familiar as you work through the lists (and which I’ve already mentioned earlier).  The only hearing I can tell in advance that I would not be allowed to attend is (d): it’s a Dispute Resolution Hearing.  I would consider asking to observe any other others – including (c), although it is an “attended” hearing, meaning that I would need to be able to attend physically in a real courtroom!  I’ve only very occasionally come across hearings without case numbers, and only attended one of them – at which point it became clear that the reason for no case number was that it was an ‘urgent’ hearing on Tuesday morning following a serious medical incident late on the Friday night before.

Finally, all three of these lists do “update” regularly during the course of the day (and overnight).  A hearing that was listed at 9pm the evening before may have disappeared by 10am the next morning – and new ones may have been added. All three websites have a “last updated” time check at the top of the page.  Keep an eye on it.

This information should enable you to find Court of Protection hearings to observe if those we list as Featured Hearings on our website, or those we tweet via @OpenJusticeCoP don’t meet your requirements (e.g. for time, geographical location, or issue). Good luck – and don’t forget that we’d be very interested in considering publishing a blog about your observations, if you wanted to write for us!

Celia Kitzinger is co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project

Image credit: By Free Clip Art – Own work, CC BY-SA 4.0, https://commons.wikimedia.org/w/index.php?curid=73556192

Bearing Witness: Anorexia Nervosa and NG Feeding

By Clare Fuller – 17th August 2020

The judgment has since been published here:Northamptonshire Healthcare NHS Foundation Trust v AB [2020] EWCOP 40 (16 August 2020)

Yesterday I bore witness. I cannot think of an opening statement to articulate the experience better; to describe it as reporting of facts or a learning opportunity diminishes the very human experience at the heart of this case.

In writing I remain mindful of the anonymous life that was scrutinised in the Court of Protection and wish to acknowledge the dignity of AB, the young lady at the heart of this case, and the suffering she endured initially as a victim of bullying at school and then a life dominated by anorexia nervosa. I wish to also acknowledge the compassion shown by Mrs Justice Roberts in her communication with AB throughout the hearing (at which AB was present) and especially in her communication with her at the end where she addressed AB directly (see a blog commending this practice, here), reassuring her that there was “no risk at all” that her judgment would authorise naso-gastric [NG]  feeding against AB’s wishes.

So how do I come to be writing about this at all? It would seem somewhat out of my area of interest and expertise as a palliative care nurse. My interest was piqued by a Twitter post from Celia Kitzinger, co-director of Open Justice Court of Protection, with whom I have previously exchanged correspondence relating to capacity and decision making from both a professional and personal view. She alerted me to the hearing, which was open to the public,  and I followed this up with an email request to the Court of Protection judicial team in which I identified the time and date of the hearing, the name of the judge, the case number and my position as a Registered Nurse with an interest in the Mental Capacity Act 2005.  I received a swift response from the Court Clerk with a link to Microsoft Teams to join the hearing.

The hearing centred around AB, a woman in her late twenties with a 13-year history of anorexia nervosa.  It followed two earlier court hearings (see this blog for a summary of one of the earlier ones), including a ruling that AB had litigation capacity to instruct counsel to represent her. This meant she had instructed her own solicitor and barrister for this hearing, rather than being represented via the Official Solicitor. 

After joining the hearing, it took me a while to fully appreciate the nuances of the case as initially it appeared that agreement had already been reached; everyone agreed that it was not in AB’s best interests to be fed via NG tube against her wishes.  The arguments presented by both parties demonstrated the complexities of the law and the challenges of applying section 3 of the Mental Capacity Act 2005, specifically the ability to use or weigh information as part of the decision-making process.

We heard first from the Doctor who knows AB well and described AB’s illness as “severe and enduring”. AB has been treated unsuccessfully for anorexia nervosa for many years and the Doctor summarised the current position by stating that “rather than trying to force someone into recovery it is about improving quality of life”.  AB has had multiple admissions for forced NG feeding, which she described in detail in her witness statement. The Doctor felt that in this case “the gain you get from it does not justify the input” and highlighted the very real threat of organ failure by re-feeding syndrome potentially caused by feeding after a period of malnourishment (AB’s current weight is around 26 kg or 4 stones, with a BMI of 9.7). At best interests meetings it had already been decided that AB’s management would be “symptom focused healthcare”.

This hearing however did not hinge on whether or not to feed AB against her will, using restraint,  but on whether she has capacity to consent to or to refuse NG feeding (in which case the Court of Protection has no jurisdiction and it is a decision for AB to make for herself) or whether she lacks that capacity – in which case the decision about NG feeding should be made for her by the treating team and, now, the Court, on the basis of her best interests.

The Doctor presented the case that while it would not be in AB’s best interests to receive NG tube feeding, she did not have capacity to make this decision herself. The argument that she does not have capacity to refuse NG tube feeding was based on what was considered to be AB’s ‘over-valued idea’ that it is desirable to be thin and to avoid being fat. This ‘over-valued idea’, the Doctor said, infected her ability to weigh things up appropriately.

AB does not agree. She wants to make her own decision about the NG tube: “”it is a decision that I do not want to be made by anyone else: not by my illness, not by my team, not by anybody”.  Her counsel argued that AB was not fighting to be thin but fighting not to be force fed (while understanding this would lead to death).

We had an indication of what AB had experienced through her Doctor’s account: however to hear AB’s own statement felt like being given a window into her world. AB requested her statement to be read by her solicitor: that did not diminish the impact of her words. We heard AB’s view on her illness, the root of this and the impact of 11 admissions and forced NG tube feeding on her physical and mental health. AB described articulately and in harrowing detail the physical restraint used and the impact this has had on her.

“To say simply that I have had 11 in-patient admissions doesn’t in and of itself convey what happened during those admissions.  It couldn’t.  I have been held down by my legs with a tube thrust forcefully and forcibly up my nose.  I have had food inserted through a syringe so quickly and violently that I was sick.  I have had my mobile phone removed from me so that I couldn’t call my friends or my family, and they couldn’t contact me.  I have been restrained and force fed in front of other patients. I have been left covered in bruises and scratches.  I have been thrown down on to a bed because I refused to sit in a chair.  I have had my feet stamped on when being manhandled.  I have been lied to, blackmailed, promised that something would happen, only to then be told that it won’t, and threatened.  I have been searched on returning from leave, as have my parents.  I have been helpless – and watched helplessly – as every aspect of my life, every aspect of my being, has been controlled by those with the power to do so.  In turn, I have kicked and screamed until I’ve been hoarse.”

AB

My thoughts at this point were on the suffering AB has endured that led to her illness, the suffering she has experienced as part of her illness, and the pain her parents must be experiencing. As a Mum I cannot begin to imagine the feelings of powerlessness in such a situation.

Despite the restrictions of her illness, AB also said she wanted “to continue living the life that I love, with those who I love, and those who love me… It is a life that I lead one day at a time, making the most of each day, not knowing whether one day I will simply not wake up”.  She described gaining much pleasure from interactions with family and with her pets (a husky, a parrot, a tortoise and a ferret). 

AB recognised the voice of anorexia nervosa – she described it as a “bullying and powerful voice”.  But, she said, “the voice making this particular decision [about NG feeding] is mine”:

“It is a voice made hoarse by screaming, and tearful by the prospect of being forcibly treated against my will – knowing all the while both that any such treatment may cause my death in any event, and that, even were it not to, the likelihood of it ‘working’ is minute.  I do not believe that anyone would agree to undergo further inpatient treatment knowing what it entails and if told, as I have been, that the chances of ‘success’ – whatever that actually means – are so low.”

AB

So, it would appear simple. AB does not wish to be restrained to be fed and the medical team do not feel it is in AB’s best interests to be restrained (for a likely period of at least 6 months) to be fed. Where then is the disagreement between the parties and why does it matter?

Crucially, the parties disagree about whether or not AB has the capacity to make the decision to refuse medical treatment herself.

The debate that followed revealed some of the infinite loop or circular argument if it were claimed that AB lacks the ability to make a capacitous decision about nutrition because she has anorexia nervosa. The barrister representing AB in court argued that:

 “the autonomy of people with anorexia should be guarded as vigorously and rigorously as those with different impairments of the functioning of the mind and no assumptions should be made about the decisions they are capable of making.  The statutory presumption of capacity applies as much to those suffering from severe, life-threatening anorexia as it does to all others.”

Counsel for AB

What I took from observing the hearing are two key points:

  • First, a finding that AB has capacity would mean that she retains her right to autonomous decision-making. The outcome likely (no NG feeding) remains the same, however decision-making would be clearly driven by AB and not made in her best interests. This matters to AB.
  • Second, if the Court finds that AB has the capacity to make decisions about whether or not to undergo tube feeding, then she will be in a position to make an Advance Decision to Refuse Treatment (ADRT) which is only possible if you have capacity to make the relevant decisions. This would provide her with lifelong protection from that unwanted treatment if she loses capacity.

This is my first experience of being present for a Court of Protection hearing. I will be reflecting on the hearing as part of my professional re-validation process and all elements of our Nursing and Midwifery Code of Practice were relevant.  (These are: prioritise people, practice effectively, preserve safety and promote professionalism and trust). I would urge other nurses to consider attending the Court of Protection as part of their professional development: the Open Justice Court of Protection Project provides excellent support for anyone wanting to do this.

Listening to the barristers’ arguments was compelling and I learned much about the Mental Capacity Act 2005. Before the case I was fully aware of section 3 of the Act (the ability to use or weigh information as part of the decision-making process), but had not appreciated the full application of this and the challenges there could be in demonstrating that this requirement was met.   What would I rule if it was my power? Listening to my head and my heart and with the evidence presented in Court I would say that AB has capacity to decide her future. My head applies the MCA and I find AB able to understand and retain information and to communicate her decision – that was never in question. Crucially I consider, on the basis of her witness statement (from which I have quoted above) that AB has insight and the ability to weigh up information despite her illness – the question that matters most in this case. My heart listens to a young lady who has suffered enough: she is asking to maximise the quality of her life and to spend her life doing the things she loves with the people she loves. The questions I would ask AB now would be drawn from Atul Gawande’s “5 Questions to Ask at Life’s End”:

  • What is your understanding of where you are and of your illness?
  • Your fears or worries for the future
  • Your goals and priorities
  • What outcomes are unacceptable to you? What are you willing to sacrifice and not?
  • And later, what would a good day look like?

At the time of writing a decision has not been made.  Mrs Justice Roberts acknowledged the need for swift decision making given the fragility of AB’s current health. If AB is found to have capacity to make a decision about her own nutrition, this will be a landmark ruling for patients with anorexia nervosa.

I started writing by saying that yesterday I bore witness and I end by reflecting on the impact that observing this case has had on me. Without doubt, the biggest impact is thinking of both AB and her family.   I now also have a better understanding of the application of the Mental Capacity Act and specifically the finely balanced argument that surrounds the ability to make a capacitous decision. I will be reading the judgment to better understand how the judge made sense of the arguments on both sides and arrived at her decision that AB either does, or does not, have the capacity to make her own decision about the NG tube.

Clare Fuller RGN MSc is Lead Practitioner for Palliative and End of Life Care.  She tweets @ClareFuller17

From Prison in Ireland to Care Home in England

By Adam Tanner – 14th August 2020

On Friday, August 7, 2020, I observed a hearing (Case number COP 13631515 Re OB) before Mrs Justice Knowles, a Tier 3 judge in the Court of Protection.   An application had been made by the Health Service Executive of Ireland (HSE) to authorise the transfer of a young man, P, from a prison in Ireland to an interim health care facility in England (funded entirely from Ireland).

The case itself was listed as an hour-long hearing but took less than 45 minutes.  The application had the  full support of all other parties.   

At the opening of the case, and in emails prior to the case, those present in the virtual Court were made aware that this case was subject to a transparency order. This order prohibits anything which may lead to the identification of P, or any member of his family, or the hospital provider, whether through direct naming or in any other way.

The barrister representing HSE (Henry Setright) was aware that public observers were present on the Zoom hearing and he laid out the facts of the case in very clear detail for our benefit. Despite the guidance from Mr Justice Hayden that there should be introductory summaries of the issues involved in the case, it often happens that lawyers and judges alike forget that others are in the court,  many of whom will have no clue about the facts of the case. It was a breath of fresh air to see counsel immediately suggest to the court that an overview be given for the benefit of those who were not a party to the case.

It was said that P had been diagnosed with autism, bipolar disorder, intellectual disability, a conduct disorder and also showed signs of a personality disorder. It was also said that P had a history of self-harm, having done so through cutting himself on at least two known occasions. Counsel stated that P’s current placement, within prison, left him in “unsatisfactory circumstances” entirely unsuitable given his very clear vulnerabilities. He was unable to take up the option of bail because there was no suitable placement for him in Ireland.

The issue in this hearing was mainly centred around the jurisdictional issues under the Mental Capacity Act 2005 of transferring a patient deprived of his liberty from Ireland to England. The applicant was asking the court to recognise and enforce the original Irish order, pursuant to paragraphs 20(1) and 22(1) of Schedule 3 of the MCA 2005. Schedule 3 allows for the international protection of adults and allows for the English courts to recognise and enforce protective measures which were issued by another jurisdiction.

HSE noted that Mr Justice Hayden had recently ruled on a similar matter in the case of HSE v Ellern Mede Moorgate [2020] EWCOP 12 (https://www.bailii.org/ew/cases/EWCOP/2020/12.html). The facts of these two cases are very similar and as such counsel pointed to this ruling to act as guidance in this case. Hayden J said that the Court must consider several instruments, to ensure that P’s rights are not infringed: this includes the MCA, the Human Rights Act, and the Hague Convention on the International Protection of Adults (https://assets.hcch.net/docs/c2b94b6b-c54e-4886-ae9f-c5bbef93b8f3.pdf).

In the current case, Knowles LJ was satisfied that the conditions laid out by Hayden LJ were met and that all criteria were satisfied for the recognition and enforcement of the original Irish order, allowing P to be transported to his interim care facility and then finally his permanent care facility in England.

This hearing was unlike any I have seen in the Court of Protection thus far, as it was noted right at the start of the hearing that applications under Schedule 3 are not a common occurrence.

My experience of this hearing was that it exemplified the transparency of the court: access to the hearing was granted within 10 minutes of an email being sent, a very clear introduction to the case was made for our benefit (without a reminder being given), and an attendance sheet was also provided before the hearing. Furthermore, once the hearing was over, I quickly received a copy of the transparency order and was able to clarify what the order allowed in the same afternoon.

As a PhD researcher, with a focus on the Mental Capacity Act and patients unable to make their own decisions, it is always a useful experience to see the Court of Protection in action. This case expanded my personal knowledge of Schedule 3 of the MCA and how vulnerable adults from other jurisdictions can be treated under the provisions of the MCA. It was also interesting to note the brief discussion that was had at the end of the case, concerning the public purse and the fact that all treatment here in England would be funded entirely by Ireland. In my research, concerning end-of-life medical care, the Court is often very hesitant to discuss the funding aspects of treatment; however, as this was an inter-jurisdictional case, finances were much more relevant.

Adam Tanner is a PhD researcher in mental capacity law and tweets @AdamrTanner

Accessing Open Justice: Our Experience

By Emma Christie and Lily Wildman – 13th August 2020

The Court of Protection has been labelled by critics such as journalist, Christopher Booker, as the ‘most sinister’ and ‘shadowy’ court in England and Wales.

The promotion of an open justice system is fundamentally important to society; it enables the public to engage in proceedings and report on them (so far as compliant with reporting restrictions) and it furthers principles such as public confidence and an impartial judiciary. However, as noted by Celia Kitzinger in an earlier blog post, it is rare that the public attend Court of Protection hearings. This somewhat compromises the achievement of open justice.

With the majority of hearings now operating remotely, we took advantage of the “Open Justice Court of Protection Project” to observe a hearing.

Our first experience with the Open Justice Court of Protection Project arose from stumbling upon the twitter page (@OpenJusticeCoP). Their page states their objective of promoting open justice and goes on to list court hearings by date, with an email and telephone number to contact to register an interest in observing the hearing. Interested but somewhat unsure about the protocol for getting in touch with the court, we messaged the reliably helpful twitter page, and – with support from Celia – we found it remarkably  straightforward to access a hearing on Friday 7 August 2020.

We chose one listed in the Family Division of the Royal Courts of Justice (the listing page is here).  These hearings are before the most senior (Tier 3) judges in the Court of Protection – for us, this was Mrs Justice Roberts.  The case (COP 13630725 Re: AB)  was listed  for hearing in open court at 10:30am.

We sent emails requesting access to the contact email address given on this listing webpage.  As advised, our email subject lines contained the time and date of the hearing, the name of the judge and the case number.  Our emails were short, but professional, stating that we were aspiring barristers with an interest in open justice and that we wanted to learn more about the Mental Capacity Act 2005 in practice. In response, we received emails from the Court Clerk which included a link to the Microsoft Teams Meeting later that day. This was around two hours before the hearing was due to start.  As it turned out, though, the hearing did not start for another two hours after the scheduled time, demonstrating a key point that will be familiar to those in the legal profession – prepare to be flexible!

When we clicked on the link to join the Microsoft Teams conference call, we were asked by the judge to confirm our names and explain our interest in the case. We were then asked to read through the ‘Transparency Order.’ These vary from case to case and as we hadn’t been sent one in advance for this particular hearing, we emailed the Clerk and read through this document after the hearing. More about Transparency Orders – a feature of almost every hearing in the Court of Protection –  is available here. For a concise summary, Victoria Butler Cole QC explained the Transparency Order and what it forbids in relation to blog posts/social media:

  • You cannot publish any information which reveals the identity of P, or any other person or body named in the Transparency Order, and links them to the Court of Protection Case
  • If you have any concerns that something you might have heard might inadvertently reveal their identity (age, where they live, medical condition etc.) you can ask the judge to clarify. You often see Press Association reports saying ‘a woman in her 30s in the East of England’ for example.

Finally, we stated that we were members of the public who were interested in learning more about mental capacity.  After this, we were told to mute our microphones and turn our video off during the hearing. The judge explained to us that this was in order not to confuse the parties to the case who were present in the hearing we observed today.

After contacting the Open Justice Court of Protection Project on Twitter, we had been given invaluable advice about how to make the most out of attending the hearing. We were made aware of how important it is to take detailed notes – this not only aided our understanding of the matters in the case but also helped with writing a blog post afterwards. As a judgment may be published following a hearing (especially hearings before Tier 3 judges), we focused on recording actual quotes from counsel or the judge, especially anything compelling or persuasive.

Here’s a summary of the hearing we observed.

The party at the centre of the case (“AB”) was a lady in her late twenties with Anorexia Nervosa. Today’s hearing concerned the issue of ‘litigation capacity’ – the capacity of an individual to instruct somebody to represent them in court. The court noted that this is separate from subject matter capacity, which relates to the capacity to make decisions on issues of medical treatment (in this case) or another substantive decision such as where to live or who to have contact with. After speaking to AB,  Judge Roberts, reiterating the words of Ms Gollop QC (counsel for AB) described AB as an “articulate, thoughtful and reasonable young woman” a factor, in addition to expert capacity assessments, which influenced the finding that AB had the litigation capacity to instruct counsel to represent her in a subsequent, substantive hearing. This will determine whether AB has capacity to refuse medical treatment.. This is a matter that is to be determined in court next week, and we hope to be able to attend the hearing.

Overall, we encourage anyone with an interest in open justice (which should be everyone), including students, or aspiring lawyers, to utilise this great project and raise awareness of just how open, open justice can be. Whilst COVID-19 has brought ample levels of disruption and postponement, it has made engaging with the  principles at the heart of our justice system easier than ever. This is especially the case for us as two Northern students who would otherwise have struggled to attend the Royal Courts of Justice in person.

Lily Wildman is an aspiring barrister who has just graduated with a law degree from Durham University and will be commencing the Bar Practice Course in September this year.  During the COVID-19 pandemic, she worked as a Care Assistant at a Nursing Home, which honed her awareness of the safeguards surrounding adults who lack capacity. She tweets @lilymwildman

Emma Christie is an aspiring barrister who has recently graduated from Durham Law School and will be returning to pursue an MJur researching the Domestic Abuse Bill (2020).  She has experience volunteering with dementia patients. She tweets @emmaleechristie

%d bloggers like this: