Best interests decisions when P’s views and wishes cannot be determined

By Katharine Shipley, 8th June 2021 (with additional material from P’s mother via Celia Kitzinger)

Editorial Note: A published judgment should appear on BAILII in the near future and we will link to it from this blog post when it does.

This three-day hearing (COP 13401563, before HHJ Tindal in Worcester) concerns a woman in her late thirties (“NW”), who has profound learning disabilities, severely restricted mobility and complex physical health needs, including epilepsy.  The issue before the court is whether it is in her best interests to continue to live in a care home or to return home to her mother.  

There were two previous hearings about this case that I did not observe. NW’s mother has written about them in her own blog post. She also contributed her views to this blog (via conversations with Celia Kitzinger).

I was drawn to this hearing for several reasons, not least because Celia Kitzinger tweeted that NW’s mother would welcome observers in the case.  A previous case I observed concerned a woman who most definitely did not want observers to be present:

I managed to observe the majority of the three-day hearing.  At the end of the hearing, I requested and received the position statements, transparency order and final order from HHJ Tindal.

Background

NW was adopted as a baby and lived with her adoptive mother until 2017 when she was admitted to a specialised care home (pseudonymised here as Dover House).  This was  initially for respite, when her mother was admitted to hospital.  

When her mother was discharged from hospital a couple of months later,  the CCG assessed that NW lacked capacity to decide where to live (capacity is not disputed) and that it was in her best interests to remain at Dover house, where she has been ever since.  

The care home is in a different county, around 2 hours travel from her mother’s home and there have been practical (and other) difficulties with contact between mother and daughter. At the time of the hearing there had only been seven visits over the last three years and six months, the first in September 2020, the remaining six since 26^th March 2021.

In February 2019, NW’s mother applied under s.21A of the Mental Capacity Act 2005 to challenge the Deprivation of Liberty (DOLS) standard authorisation and the case originally came before Judge Plunkett in November 2019 (see the mother’s blog post referring to this hearing). It is unclear what happened at that hearing, or why matters were then delayed until November 2020 – “covid intervened” says HHJ Tindal in his judgment. 

In November 2020, there was supposed to be a three-day hearing.  This didn’t happen.  Although NW’s mother went to the courthouse and was there for the whole of what was supposed to be the first day of the hearing, what actually happened that day was a complete mystery to her (see her blog post).  

According to the position statement from the CCG, the November 2020 hearing was adjourned to enable contact between mother and daughter.  The court’s order set out recitals that it was lawful under the relevant COVID-19 regulations for that contact to take place, and outlined how it would be arranged.  The order made s.15 declarations that NW lacked capacity to make decisions about litigation, residence, care and contact and provided an expert report on her communication abilities, and an interim declaration that it was in NW’s best interests to have contact with her mother – in the care home, in the community and at the family home.  It seems that at that point HHJ Tindal was keen to see if a ‘third option’ could be found, whereby NW would remain a care home resident but have overnight visits to her mother.

The issue at this hearing was (still) whether NW should remain in Dover House, which is what the CCG (who fund her care) argued, supported by the local authority, or whether she should return home, which is what her mother wants.  

The parties

NW’s mother was the applicant, as a litigant in person.  She told us that about 2-3 weeks before the hearing, her legal aid team had told her they would no longer be working on the case.  “I immediately set about seeking a practice that would accept the case, but following 70 – 100 enquiries in that short time I failed.”  She represented herself in court but was supported by written submissions by Victoria Butler-Cole QC, provided pro bono.  (“Victoria phoned me on a Friday evening and worked on my submission on the Saturday and Sunday”, she told Celia Kitzinger in a phone conversation after the hearing.  “It was absolutely more than wonderful and something I will remember to the end of my life.”)

NW was represented (via her litigation friend the Official Solicitor) by Grainne Mellon.  The Clinical Commissioning Group was represented by Rosie Scott and the County Council by Michael Paget.  

My impressions of the process

This hearing was ‘hybrid’, meaning that some of the people were physically present in court (including NW’s mother) and others were on video link. From an observer’s point of view, I felt the format worked well (with the inevitable odd technical hitch).  It seemed a good compromise, neatly reflecting this period where we appear to have one foot in the pandemic, one foot out.  I’m sure for some witnesses, providing evidence by video link is a far more practical option and maybe hybrid hearings will become more commonplace – though it is concerning to know that in one recent case observers were excluded from attending a hybrid hearing via video link and were only permitted to attend in person.  

Early on the first day, remote observers did have difficulty hearing the first witness, due to the noise of the judge typing near the microphone.  This was quite swiftly resolved by the court clerk after observers raised the issue via the video link chat function.   I did also have some difficulty working out who was who, particularly those who were physically in court, but I think this was largely down to my limited experience of the legal arena, and I learned some lessons for next time!

From the outset, HHJ Tindal came across as warm and sensitive,  immediately addressing NW’s mother in a down-to-earth manner.  He told her that there were observers, explaining to her that ordinarily COP proceedings are held in private because important decisions were being made about vulnerable people, but a balance between privacy and confidentiality is required (although his explanation did not quite reflect the situation as I understand it, e.g. as explicated here). In any event, she readily agreed to having observers present.  

I felt that HHJ Tindal struck an excellent balance between allowing witnesses time and freedom to give evidence and parties to ask questions; and steering and refocussing the process.  At times when things looked like they might derail, he quickly suggested a break in proceedings so that an advocate could re-evaluate their line of questioning.  

How NW’s mother experienced the process (as told to Celia Kitzinger)

At least this time on Court morning I was prepared for the entrance security measures.  Last time I had been confused and uncertain by the expectations on arrival and the lack of any guidance.  

I was intentionally early and when the others arrived, we all went down to small rooms where I sat alone while they each prepared. 

A member of court staff came to me and made herself known as a court clerk.  She was part of the court hearing throughout and always kept a kindly eye on me. 

The barrister for the Official Solicitor came to see me to reassure me that no-one was preparing to act unpleasantly to me in court and that I should ask for help at any time.  

We were called to enter the court and to arrange our seating Covid style. To my horror I was placed alone in the front row, on something like a church pew.  When the judge came striding in and sat down, I was right in front of him.  It felt like a first day at a new school and I felt about 8 years old. 

Right at the beginning the judge spoke to me and said, quite strongly, to both me and the court, that I was not in any way under any criticism by the court at all and I should not feel guilty about anything.  Even now I find that both unexpected and surprising.  I have said on many occasions that while I am not guilty of any wrongdoing or lack of truth at any point, I have had to cope with many implications of failure and inadequacy by the NHS during the last three years as they seek to justify their actions. He said he was sorry that I was unrepresented but that he would endeavour to be as helpful as possible. He was helpful and courteous throughout.  So were the barristers.  I often felt at a loss to fully understand what was going on but that is to be expected as I am not familiar with legal language, and no fault of the professionals.

The options

Initially, HHJ Tindal suggested that there may be three available options with regard to NW’s residence: 

(1) NW to remain in the care home; 

(2) NW to return home to live with her mother with a package of care; or 

(3) NW to remain in the care home, but with regular overnight stays at home with her mother.  

Regarding the option of living with her mother, there was a question of whether the care would be commissioned by the CCG, or whether NW’s mother could manage a Personal Health Budget and employ carers directly. 

NW’s own wishes and feelings

Whilst ‘P’ may not always have the mental capacity to make certain decisions, s.4(6) Mental Capacity Act (2005) requires that their wishes, feelings, beliefs, and values are taken into account.  The Court of Protection has given increasing prominence to this in recent years.

In this case, we learned that not only was NW deemed to lack capacity to make decisions about her residence and care, but that her wishes and feelings were near impossible to determine.  Her mother did not argue that NW wanted to return home.  Instead she said that NW was unable to have or to express a preference.

Her mother explained that NW has a developmental age of 33 weeks. She believes that NW has Angelman syndrome. NW has recently been tested for this and the result is pending.  One of the symptoms associated with the condition is a tendency to smile and laugh, often with little stimulus.  NW’s mother said (in a written statement to the court): 

“The facial appearance is rather meaningless… The Angelman person has limited or no capability to express any negative emotion at all… [NW] has not cried for many years; she barely reacts if hurt… those reactions are largely meaningless.  Some have said that they think she remembers them. But there is no way to tell.  She reacts much the same to any person, strangers or not, me included.  She has no capability to express a negative choice or any choice at all.”

An exchange between the judge and NW’s mother went like this: 

HHJ Tindal described the mother’s opinion on NW’s inability to express choices or views as unusual, and “an incredibly honest philosophical position”.

NW’s mother wrote to Celia Kitzinger, afterwards, about this part of the hearing:

“The judge tried hard to understand when I answered truthfully that since she is unable to express or even show whether she has emotions or can make choices I would be untruthful if I stated that she loves me.  I refused to declare that I can easily know what is going on inside her just to suit my own need.  I tried to explain that careful observation over a length of time is just a starting point and that she makes almost no meaningful gestures like head nodding, and that I do not pretend that I choose to know what she might want in order to justify my own opinion.“

Expert evidence from a speech and language therapist (provided in a report) concluded that NW “does demonstrate ability to engage in interaction with a communicative partner” via vocalisations, body movements and facial expressions, that she is “aware of people and demonstrates knowledge of who is familiar and who is not” and that her behaviours “are suggestive of her expressing her emotions” but this may only be apparent “when the communication partner is highly familiar with her types of communication”.

The director of care at the Trust which runs Dover House provided evidence that NW engages well with familiar people and “without a doubt recognises who are her peers”.  

There was evidence that she ‘plays games’ with staff, declining to make eye contact or ‘talk to them’ and then laughing and engaging animatedly with them. She has indicated she “likes certain individuals caring for her” and NW has spoken single words (including two carers’ names). Care home staff are said to have reported that NW “interacts with all those around her” and that she had taken “a lead role in the home’s pantomime and loved the whole festive experience”.  

NW’s mother disagreed with these assessments. She sees them as ‘fantasy’.  She dismissed references by the care home that NW ‘engages’ with activities such as drama, as she said that it is not possible for her to interact in this way.  She said that  “NW is not able to express needs in a way which others can accurately interpret”.  In her view, the staff “read things into her, what they assume they should read”.   She said that NW is unable to communicate even severe pain or basic choices.   She postulated that cats and dogs were better able to express their preferences.  

On the other hand, NW’s mother did point to some ways in which NW conveys preferences.  She said that she thought NW liked balloons, wondering if she interpreted them as faces.   She also said that she seemed to respond particularly well to men’s voices, particularly when they were loud and confident.    

The difference of opinion between NW’s mother and the professionals was characterised by the judge, in his published judgment as “a difference of emphasis… not a difference of substance”.  

“Like the proverbial half-full or half-empty glass of water, Mum focusses on the limitations of NW’s communicative ability (not least because Mum derives ‘some comfort’ from her belief that NW cannot recognise her own happiness or unhappiness) whereas [the speech and language therapist] focuses on the fragile potential …. This resonates through the evidence in this case: in many ways a debate between Mum’s focus on what NW cannot do and the professionals’ focus on what she can.” (Judgment, 15^th May 2021)

What came through most powerfully from her mother’s testimony was her deep and enduring love for NW and her strong commitment to her welfare.  She described her daughter as “an unusual and remarkable person”. She said that she thought that NW had “come here for a reason” and that she was “stirring all our thoughts here”.

Dover House vs. returning home – considering the issues

NW’s mother’s position – returning home

The key argument advanced by NW’s mother in court was that her daughter should return home.  The main reason she gave for this was because of grave concerns about the care NW was receiving at Dover House and her belief that she would be able to oversee the care provided to NW at home and ensure it was appropriate.  She accepted that she could not provide care alone, due to her own health condition, but is content for a care agency to do so, with her oversight.

NW’s mother described the care at Dover House as “horrifying really”.  She said that her daughter had sustained a broken elbow under their care (cause unknown).  This had been reported to the police and to the safeguarding team (with no evidence of any lack of care found). She also  expressed concern about night seizures, NW not wearing glasses and delay investigating Angelman’s Syndrome. She said that on one visit, NW had “big strapping things digging into her neck”, and that on another occasion they “ignored that she was ill – her lips were cracked”.  She also said that her daughter was cold all the time. She said, “I just don’t have the right to leave her there”.  When asked about how she would feel if the court decided that NW should remain at Dover House, her mother said that in that case “I would pray she doesn’t live very long”.   

The judge, however, accepted that “the objective evidence satisfies me beyond any real doubt that NW is very cared for and is settled at [Dover House]”, finding this evidence is “corroborated by the consistent view of a number of experienced professionals” who had visited the home and checked on NW “over a very protracted period of time when Mum was not visiting”. 

NW’s mother had – as the judge pointed out – rather limited knowledge of how her daughter was being cared for, since she had only recently started visiting her there.  Difficulties with regular contact seemed in part due to practical and financial impediments, and in part due to the mother’s concern that visits might upset or unsettle her.  She had however recently visited more frequently, following an order by HHJ Tindal in November 2020, facilitated by funding for travel from the CCG.

NW’s mother described her own living environment as a rather idyllic close rural community.  All the neighbours were concerned for NW and were “looking for her”.  The house had been adapted extensively for her some years ago.  Her mother said that she thought there was a perception that she and NW “did nothing but look at each other” and explained that she had involved NW in many activities up until she went to Dover House over three years ago.  She described how she had done horse riding and hydrotherapy for some years, but these had been unfortunately stopped as the staff had become concerned by her seizures. 

The written submission (the position statement) prepared for NW’s mother (on a direct access pro bono basis, at short notice) by Victoria Butler Cole made additional arguments.  She pointed out that NW’s right to respect for her family is “of fundamental importance”, drawing on case law^[1] to argue that: “It is for the state to show that institutional care is better than care at home, and further, that the person’s welfare cannot be adequately sustained other than in an institution.”

This position statement submitted that:

“For someone with limited communication, the significance to NW of being with a person who has known her for her whole life and loves her, cannot be overstated.  There is really no comparison between the bond of mother and (adult) child and that with paid carers, whose involvement in N’s life will inevitably be temporary and inconsistent. There can be no doubt that [her mother] knows NW better than anyone else.”

In relation to the ‘third option’ (frequent visits to the care home by NW’s mother),  exploration of which was encouraged by the judge at a previous hearing, the formal position statement says:

“The quality and extent of contact between N and her mother if she remains in institutional care is hugely significant. It is not unusual for a parent in [this] situation to feel unable to visit their (adult) child in an institution where the admission and detention of the child are against the parent’s strongly held wishes.  Feelings of guilt for not having been able to protect the child, and fear that the child will not understand what has happened and might feel abandoned or rejected, are common.  It is also common for people to feel that by visiting they are endorsing the arrangements. It would be wrong in this case for the court to conclude other than that [her mother] loves NW and is dedicated to her, and that their relationship is of great importance.”

The position statements concludes – in line with NW’s mother’s stated position in court – that a bespoke care arrangement using a Personal Health Budget would be the best and most sustainable way of providing care.  The court, however, heard evidence from two agencies.

Two community care companies presented evidence regarding potential care packages, should NW return home.   Both were confident of their ability to provide such care. The care providers could not be very specific about the options for activities and physical therapy without their services being commissioned, but there was discussion about consistency of community activities being affected by likely timetabling and logistical difficulties.   The rural position of her mother’s house and recent incidences of NW having seizures which were seemingly triggered by travelling, were cited as  potential obstacles to community activities.  

The CCG position – remain at Dover House

At the current care home, NW has access to 24 hour registered nursing for management of her complex needs, including her PEG, postural management for scoliosis, epilepsy management, physiotherapy, occupational therapy and speech and language therapy. 

NW’s mother commented afterwards on the way in which one of the witnesses for the Trust described the need for expert nursing care, and the gulf between what was being said and her own experience of managing problems with a feeding tube.

“From my perspective,  much of her testimony had little to do with my daughter’s life and care.  Perhaps it sounded authentic to the Judge but certainly had no relevance to our community healthcare arrangements.  She gave a dramatic description to the judge  of potential problems with gastric feeding tube – describing the need for district nurses, emergency ambulances and hospital admissions. It was an enormous exaggeration and made it sound like a real emergency.   I realised I needed to act, though I was almost being sick with nerves.  I silently put up my fore finger to get the judge’s attention and looked hard at him.  He stopped her, then spoke gently to me saying that I should not interrupt.  I carefully said “please,  I want a chance to respond to this when possible”, and then she continued.  He turned to me when she finished and I explained that when we have a problem with a tube, we set up a hygienic area, bring a new boxed sealed tube set from bathroom storage and perform the replacement ourselves.  Later, I would inform the speciality nurse with dates etc. and perhaps the consultant’s secretary and that is all.”

Dover House offers a wide range of activities including wheelchair dancing sessions, sensory activities in a special room with a projector, aromatherapy, arts and crafts and (in the neighbouring house) a hydrotherapy pool and special trampoline.  NW’s mother referred to this as “Butlins style accommodation rather than committed care at home – care that has exceeded her several life expectancies, with no broken bones and no medical or social care criticisms.”

The available activities and therapies in the community were discussed throughout the hearing. Whether these were assessed to be ‘desired or required’ was said to have a likely impact upon their being funded.  However, at Dover House, such activities and therapies were on site and ‘part of the package’.  One of the community care providers stated that he was very impressed with Dover House when he visited, and evidence from the CCG was that Dover House provided the “Rolls Royce” option.    Evidence from Dover House was that NW had exposure to wider experiences than “in the insular home environment”.   

Evidence from care providers and from the CCG was that recruiting and retaining regular, consistent carers was not easy in a rural location and that this would be a particularly difficult task without using a care business.  NW’s mother had previously recruited carers using a Personal Care Budget and was confident that she could do this again.  She had struggled to recruit carers but said that this was because the CCG had stopped her from advertising.

Official Solicitor – concerns with mother-daughter bond

Before the hearing, the Official Solicitor said in her position statement that the decision about where NW should live was “a difficult, and finely balanced, decision for the court to make”.

In the absence of evidence about NW’s wishes and feelings regarding where she should live, Ms Mellon, on behalf of the Official Solicitor categorised elements of NW’s quality of life, care, and treatment into 9 discrete factors.  In this way, an attempt was made to objectively quantify, compare and contrast these factors across the two options.  These factors included activities, nursing care and contact between NW and her mother.  

One of the main issues on which this case hinged related to the suggestion by NW’s mother that if NW remained in Dover House, their bond would be “destroyed”; a factor described by Ms Mellon as “magnetic”.  

The final position of the OS was, although the issue was finely balanced, that it was in NW’s best interests to return home.  

“When we left the court for a break the OS barrister quietly spoke to me alone and told me that she was going to suggest that my daughter should be allowed to come home. Very surprising, and it was truly kind of her to let me know.”

The oral judgment

There was a short break before the oral judgment was delivered.  During the break, NW’s mother was given a single page summarising the judgment so that she knew in advance what it would be.  The decision went against her (and – somewhat unusually –  the Official Solicitor).  NW must stay in Dover House.

HHJ Tindal began by addressing NW’s mother directly.  He said, “There are few occasions in your life when you are going to disagree with someone as much as you are going to disagree with me.” 

Although he had drafted a judgment of more than 30 pages, he did not read it out. He said, “You have the right to hear the judgment from me and me talking to you, rather than me just reading it out or hiding behind an email”.  

A care package at home would have a number of advantages and a number of disadvantages, but the judge was not comfortable that this would be sustainable in the long term.  He was “gravely worried that she would not be able to access activities”.  HHJ Tindal told NW’s mother “we will have to agree to disagree.  I respect your right to disagree”.  

In his written judgement, HHJ Tindal explained that if NW returned home to her mother, he was concerned that the mother’s  difficult relationship with the CCG could make the ongoing success of any care arrangements precarious.  In the event of the home package breaking down, NW would be unlikely to have a place back at Dover House, and her most likely destination would be a care home less well-suited to her needs.

Considering her fear that the ongoing placement would destroy their relationship, HHJ Tindal said hopefully, “what I see is your relationship re-blossoming”.  He continued “given the balance of advantages and disadvantages, I wouldn’t be honest if I said that I felt that her best interests lay with you”.  

HHJ Tindal’s judgement was that NW’s best interests lay at Dover House, with transport for her mother to visit her being funded by the CCG.  He also requested that funding for her accommodation also be considered.  He also talked of ‘mediation’, suggesting that Dover House identify a single point of contact to assist in forging a better relationship between the organisation and NW’s mother.

The ‘resistance’ of NW’s mother to visiting NW at the home  reflects, says the judge:

 “… her ‘all or nothing’ perspective: either NW returns to live with her or their relationship will be ‘destroyed’. Whilst of course I accept this is not deliberate on Mum’s part, she agreed with me it did feel quite like an ‘ultimatum’”. (Judgment, 15^th May 2021)

My reflections

My impression over the three days, was that much care and attention had been taken to explore all the options in some considerable detail.  NW’s mother had clearly been deeply hurt and angered by past events around the time that her daughter was taken into care, but the judge was at pains to focus very much on the future, with a “fresh approach” (this included a new representative from the CCG, since the previous hearing in November 2020).   

Representing herself as a litigant in person, I felt that NW’s mother’s voice was absolutely heard.  She was given time and freedom to express herself.  She conducted herself with great dignity and strength. Her commitment to and advocacy for the daughter who cannot speak for herself was truly awe inspiring.  HHJ Tindal educated and guided her through the legal process. He was pragmatic in his approach, and I thought he showed humility and flexibility.  

During the course of the hearing, it became apparent that the Section 21A challenge had been brought predominantly due to NW’s mother’s serious concerns about the care her daughter is receiving in her current placement.  She may have been frustrated that these concerns were given so little attention, but in the apparent absence of other evidence to support these concerns, it was difficult to see how these could have been further addressed within this forum.   

I was struck by the approach taken by the Official Solicitor of itemising, comparing, and contrasting factors relating to care and activities between the residence options.  On the one hand, how else does one consider the relative merits?  On the other, weighing the relative importance of these factors can surely not be so straightforward.  Is the unique relationship with a primary caregiver who has lived with and cared for the person for over 30 years, understands them intimately and loves them unconditionally, a tangible benefit that can be quantified?  Maybe this would have featured more prominently in court if Victoria Butler Cole had been there to represent NW’s mother.

I have observed a number of hearings in the (virtual) Court of Protection now and they have taught me so much more about the workings of the Court and the application of the Mental Capacity Act (2005) in the legal arena than any reading has done.  I learned even more about the real-life application of the law in this area by absorbing myself in a longer hearing, with subsequent access to the associated paperwork.  For instance, the final judgement explores the legal arguments and case-law relating to the rights to a private and family life (responding in full to the points raised by Victoria Butler Cole) and the associated implications in this case.  

By the end of the three-day hearing, I felt that a rapport had been forged between NW’s mother and HHJ Tindal.  He told her that the job that she had done in looking after NW was “nothing short of astonishing”, that he believed her to be an “inspirational person, “heroic” in her care of NW,  and “one of the most fascinating people I’ve ever met”.  

During his summing up, HHJ Tindal considered whether any review hearings might be required, NW’s mother said,“I’m never coming here again!”. HHJ Tindal explained that he had confidence that she had “the wherewithal and ability” to raise any future concerns and that “she knows where we are”.

I really hope that NW’s mother – despite her profound disagreement with the judgment – will, as the judge suggests, visit her daughter regularly as everyone now seems to want to make possible – enabling her to have what the judge described as “the best of both worlds” – all the facilities of the care home, and the love and attention of her mother.  “I would urge Mum to work as hard as ever to do her best for NW.  Mum told me more than once NW is here for a reason.  I know Mum will always love and support her in that.”

Dr Katharine Shipley is a Clinical Psychologist who has worked for most of her career in forensic mental health and adult neurodevelopmental NHS services.  She now works in private practice and has been a Court of Protection Special Visitor since 2017, conducting mental capacity assessments for the Office of the Public Guardian and the Court of Protection.  She tweets at @KatharineShipl2

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^[1] Re S (Adult Patient) (Inherent Jurisdiction: Family Life) [2002] EWJHC 2278 (Fam) per Munby J and London Borough of Hillingdon v Neary & Anor [2011] EWCOP 1377 per Peter Jackson J

Photo by Muhammad Murtaza Ghani on Unsplash