Unseemly turf wars and uncoordinated care

By Jenny Kitzinger, 16th December 2020

The hearing I attended on Wednesday 9th December 2020 (Case: 13382192 before District Judge Tindal), was about Mr G, an individual in his early 60s with frontal lobe disorder, diabetes and other medical issues. He wants to leave the acquired brain injury [ABI] care centre that he originally entered almost a year ago, to return to living in the community – but has previously been deemed to lack capacity to make a decision about this for himself. 

This December hearing is the third I’ve observed concerning Mr G. I blogged about a previous hearing in July 2020 and another in October 2020. This latest hearing was supposed to be the point at which a decision about where Mr G might live could finally be made. 

Sadly, this didn’t happen. It wasn’t possible to make a decision due to problems with progressing specific plans to put viable options on the table. This means that Mr G has to stay where he is – at least until the next hearing in February 2021. He expressed his disappointment and dissatisfaction with the process: 

“My case is being kicked around from one party to another. Recurrently people who are meant to do a certain action have failed to do so. I’ve been here almost a year and the core principle – which is my well-being – may have been lost.”

He referred back to a comment made by the judge in opening the hearing, and said: 

 “In the commentary you delivered you mention an “unseemly turf war”. That seems an apposite description of what’s going on here. The only people aside from my solicitor and barrister who’ve behaved with any dignity, any care – assets you might look for in a clinical setting – are the small but willing team in this place [ABI care centre] who’ve always treated me with dignity and respect. Everyone else has kicked me around like I’m an object. Which I am not. I am not going to give up. My life is ticking away in real time. I need action, by you, Your Honour, to return me to the life I’ve been deprived of”.

Mr G’s sense of frustration was echoed by the judge, Judge Jim Tindal. The hearing concluded with another hearing being scheduled for February 2021, in the expectation that all the necessary information and options should be in place by then. The judge intimated that at the February hearing he would need to choose between available options come what may, and that would include the possibility of a return to living in the community (while not guaranteeing that outcome):

“Even though I don’t have entire comfort in statutory agents doing what they should, I might make a decision nonetheless, providing a fait accompli to the NHS. I will not be prevented from making that decision by excuses.”

Addressing Mr G, he said: “I can’t promise that I will make that decision [to allow a return to living in the community] but I will make my decision with your views at the centre of the decision-making process”. 

So, what had gone wrong? 

The problem

The reason why all the information necessary to consider alternative placements was not available at this hearing was clearly linked to a lack of coordinated care. 

There was a dispute between the Local Authority and the CCG about whether Mr G was eligible for Continuing Health Care (CHC) funding. The CCG’s position is that the person responsible for Mr G’s care is his GP. The Local Authority’s view is that Mr G’s needs are primarily health related. The Local Authority has completed a CHC check list and is awaiting the outcome of that process. The lack of CHC funding meant that Mr G had not been assigned a care coordinator who might ensure that all the relevant medical care and paperwork was in place, and various things had fallen through the gaps. In particular the pain clinic, which it had been hoped would set him up with a trial of pain patches which might facilitate his return to the community, had failed to do this. A parallel problem delaying consideration of the options for Mr G was that probate was still not complete in relation to  his mother’s flat where he hopes to live.

Alexis Hearnden, representing Mr G via the Official Solicitor, commented that it was: “very unsatisfactory that there is not someone at the reins of all this” and underlined the point that disputes about who is responsible for funding should not impact on the care of the person in question. There was, she said, a need for a collaborative, not piecemeal, approach.

Much of the hearing was taken up with trying to put in place various strategies to ensure that the multiple statutory bodies could be brought together to establish such a collaborative approach. There was also discussion of whether joined-up thinking might harness litigation to expedite probate and consideration about whether to use Section 49 to ensure the right information was available at the next hearing (see also PD14 – https://www.judiciary.uk/wp-content/uploads/2014/05/pd-14e-section-49-reports.pdf).

Reflections

The problems highlighted in this hearing are familiar to anyone trying to support an individual who lacks capacity to make their own decisions about where they live or the treatment they receive. There was a great deal of determination in the hearing (among the half dozen senior professionals present) to try to solve the problems, but it struck me how relatively powerless even they felt to resolve the situation in a timely way. This is in spite of the fact that, time and time again, judges have been critical of turf wars, and of the lack of coordination and unnecessary delays that are inimical to high quality best interests decision-making. 

In the cases that I’ve observed, the judges are usually clear about not overstepping their powers and not ‘brow-beating’ or blaming anyone, but I’m left wondering what is happening to the huge pool of information collated through such hearings about breakdowns in care or inherent system problems.   If such hearings cannot help deliver systemic changes, then hours of court time spent on individual cases on a case-by-case basis seem a problematic use of resources that might be better used directly addressing gaps for all – including the majority who cannot harness litigation to address their situation. 

This hearing underlined for me the urgent need to reform the way in which care is funded and to ensure that care coordinators are available to all who need them. 

Meanwhile, Mr G remains in a placement which he resents, without the possibility of alternatives being considered.  And thousands of others battle with similar situations which undermine best interests, waste financial resources, and cause frustration and distress for the individuals at the centre of each case – and for the families and healthcare professionals supporting them.

Jenny Kitzinger is a Professor in the School of Journalism, Media and Culture at Cardiff University, where she also co-directs (with Celia Kitzinger) the Coma and Disorders of Consciousness Research Centre. She tweets @JennyKitzinger

Photo by Martin Lostak on Unsplash

Is it lawful for Z’s carers to support him in accessing a sex worker?

By Astral Heaven, 14th December 2020

In August 2018, a man in his 20s – the court asks us to refer to him as “Z” – told his Care Act advocate that he would like to have contact with a sex worker. She raised this with his social worker and legal proceedings were started on 26 February 2019 by the local authority. The question of the lawfulness of that proposed contact has been an issue in the case from the outset, and was the key issue addressed at this hearing.  

I observed this hearing (Case No: 1252118, Re: Z), before Mr Justice Hayden, Vice President of the Court of Protection on 2nd and 3rd December 2020.  He did not make a judgment at the time but said he would do so before Christmas. 

Background

Z has diagnoses of autism, mild learning disability, XXY syndrome and delusional disorder.  He is living in a supported living placement with a local authority and CCG funded care plan in place comprised of 24 hour 1:1 – and at times 2:1 – support. As the measures within his care plan amount to a deprivation of liberty, there is a community deprivation of liberty authorisation in place.

Since August 2018 when Z first raised the issue, a significant amount of work has been completed to look into whether it would be possible to support him in contact with a sex worker. Initially a court application was made by the local authority for a declaration that Z did not have capacity to make to make his own decisions about contact with a sex worker and that it was not in his best interests that he should do so, but their position has since changed.  

The current position is that Z has capacity to engage in sexual relations, and capacity to make the decision to have contact with sex workers: this was established through assessment by an independent consultant psychiatrist (Dr Christopher Ince). However, Z was judged to lack capacity to make decisions as to residence, care and support, financial affairs, use of the internet and social media and to conduct these legal proceedings.

Z would not be able to make arrangements to visit a sex worker, or pay her, without the support of his team.  The Local Authority and CCG have agreed that implementation of a carefully thought through sexual contact care plan to help Z access a sex worker would be in his best interests and they were prepared to commission a care plan. However, they would do this only if the Court would make a declaration that the care plan would be lawful and that no offense would be committed by the care workers in light of s. 39 Sexual Offences Act 2003, which criminalises actions that intentionally ‘cause or incite’ sexual activity involving a person who has a mental disorder, by a person involved in that person’s care.

It is not unlawful to pay for sex.  The question is whether supporting Z (who has a ‘mental disorder’) to have sex with a sex worker would be unlawful, on the grounds that s39 makes it an offence for third parties who are carers to be involved in making such arrangements.

These arrangements could potentially involve:

(a) assisting Z in selecting a particular sex worker from those available (by presenting him with a choice in a format suitable for him); 

(b) determining the payment requiring and accompanying him to the cashpoint to help him obtain the relevant sum in cash, which Z would then keep in an envelope ready to make the payment himself when required; 

(c) making sure Z’s co-tenant is out of the house while Z spends time with the sex worker;

(d) remaining in Z’s house in the upstairs bedroom; and 

(e) working with Z to prepare a plan for how the activity should go in advance. 

Victoria Butler Cole QC and Ben McCormack were representing Z.  Sam Karim QC acted for the CCG, Neil Allen for the Local Authority, and Fiona Paterson for the Secretary of State for Justice. 

Setting the scene

For me, the opportunity offered by remote hearings to observe cases brought before senior judges such as Mr Justice Hayden, has presented fantastic learning during this pandemic. It’s meant it’s been possible to observe cases involving serious medical treatment decisions and cases such as this, involving complex ethical dilemmas. In previous hearings I’ve observed, the focus has been purely on the Mental Capacity Act 2005, so it was interesting in this case to be able to observe the Mental Capacity Act’s complex interaction within the wider legal system – in this case the Sexual Offences Act 2003.

Right at the outset of the hearing there was an issue about the transparency order. At an earlier hearing regarding this case in November 2019, a journalist (Brian Farmer) had made a request for the transparency order to permit naming the Local Authority, and this had been granted.  When reports of the case were published there were unpleasant comments from members of the public. Victoria Butler Cole QC queried whether there should be a temporary ban on reporting until the judgement is published.  Mr Justice Hayden advised that the hearing is ‘fraught with problems about reporting and is no doubt going to excite ignorant and vituperative remarks as well as reflective intellectually curious ones”, but pointed out that the “genie is out of the box”. He said: “These issues are difficult and they benefit from being publicly openly debated in full disinfectant sunlight – or whatever the phrase is – of open court” (This is a reference to the US Supreme Court justice, Louis Brandeis’ observation that ‘sunlight is the best disinfectant’). 

Mr Justice Hayden said that he had met with Z and had come away with the feeling that Z might be contemplating only one episode of involvement with a sex worker.  It was an experience he would like to have, but he may just have a cup of tea and play cards with her, and may decide at the final moment that he did not want to have a sexual encounter at all.  He said it seemed that there was a lot of pressure on Z and that “a first sexual encounter usually has some degree of spontaneity about it and is rarely subject to the scrutiny of a judge and leading counsel”. 

At the start of the hearing Mr Justice Hayden requested an outline of the case be provided for the benefit of public observers and also agreed that the skeleton arguments (with some of the detail removed), could be released to us ‘to help with general understanding and accurate reporting’. This significantly helped in my being able to properly understand and follow the case (within the confines of my ability!). At several points, Mr Justice Hayden asked the barristers to go back over some of their arguments so he could fully understand the important points being made and I also found this helpful in aiding me to follow the proceedings. 

As it’s unlikely to be a practical option for Z to access a sex worker until Summer 2021 due to the pandemic, Mr Justice Hayden wished to draw back from scrutinising a best interest care plan that would not kick in for 6 months.  Instead, the central focus at this hearing was the issue of whether or not support could be provided to Z to enable him to access a sex worker, without breach of s. 39 of the Sexual Offences Act 2003.

The argument that it would be lawful to support Z to access a sex worker

On behalf of Z, Victoria Butler Cole QC argued in court that the acts to be carried out as part of the proposed care plan do not involve any intentional ‘causing or inciting’ of Z to have sex with a sex worker.  She said that it would be wrong to interpret the Act in that way because its purpose was to criminalise the exploitation and abuse of people with mental disorders by those with a relationship of trust.  It was not the purpose of the Act to prevent people with mental disorders from having sex.  

She also argued that the actions of the care workers would not “intentionally cause” Z to have sex because Z is making a voluntary and informed choice to engage in sexual relations, and simply requires the assistance of a third party to put this into practice.  The ‘narrow’ interpretation of s.39 that would criminalise care workers assisting Z in this scenario would also, she argued, criminalise acts such as driving a person with a ‘mental disorder’ from their home to their partner’s home (knowing that the couple were likely to have sex) and actions such as providing a private area in a care home for someone with a ‘mental disorder’ to have private time with their partner. 

Victoria Butler Cole QC further argued that if the court were not to accept this reading of the Sexual Offences Act (two criminal lawyers, Nina Grahame QC  and Kirsty Brimelow QC had submitted contrary opinions), then the judge must use his interpretive powers under s.3 Human Rights Act 1998 to read and give effect to the legislation in a way which is compatible with the European Convention on Human Rights

If the hypothetical care plan cannot be implemented without breaching the Sexual Offences Act 2003, and cannot be read in a way that is compatible with the Human Rights Act, then, she said, the court should make a declaration of incompatibility.  Both Article 8 (Respect for private and family life) and Article 14 (Protection from discrimination in respect of these rights and freedoms) are engaged.

In Z’s case, the plan was to use a charity called the TLC Trust.  The charity describes itself as

a committed and passionate non-profit organisation who are striving to promote sexual services for disabled people in a safe, fun and responsible way. Having access to intimate experiences is a basic human right.”

The philosophical basis of TLC is that people with disabilities should be able to have the same access to sex as non-disabled people. Victoria Butler Cole QC explained that whilst other charities work to dispel stigma and discrimination, TLC takes this one step further and finds sex workers willing to work with those with disabilities. 

The existence of TLC shows that the need for transactional sex services for disabled people is not uncommon, particularly for younger men with brain injuries. An informal survey of members of the Professional Deputies Forum had been submitted as a witness statement in order to assist the court in understanding what happens on the ground. The anonymous feedback from members of this organisation (composed of solicitors who are professional deputies – the organisation represents about 50% of all professional deputies) shows that they have a wide range of experience involving clients seeking sexual services, and that professional deputies have paid for sex workers for their clients and put the accounts in to the Office of the Public Guardian under the ‘leisure’ or ‘entertainment’ budget.  

The court heard that such services have proved beneficial for people, especially those with brain injuries, with positive impact on previously difficult-to manage behaviours. Victoria Butler Cole explained that professional deputies need to know if this is not allowed under s39.  If it is not, then (as one professional deputy pointed out), this leaves disabled people trying to access these services for themselves, which in practice will place them more at risk (e.g. “of unwanted pregnancy and falling in love with unscrupulous characters”, to quote a deputy from the survey). At this point in the argument, Mr Justice Hayden seemed to accept that a narrow construction of s39 might render those it’s intended to protect more vulnerable.  He also noted that no one was asking him to intervene because Z is believed to be at risk, and that “the risk is from the prohibition, rather than the facilitation of these arrangements”. 

Counsel for the Local Authority, Neil Allen, also took the position that it would be lawful to provide the kind of support for Z envisaged in the hypothetical care plan.  He advised there is a fundamental distinction between providing someone with opportunity to exercise their own judgment and “causing” them to do something.  It would be Z’s capacitous decision that provides authority for the sexual activity to take place. The care plan provides opportunity for Z to be in the presence of a sex worker, but whether a sex act takes place will depend on Z’s own decision. The care workers will be providing the support necessary for Z to implement his own decisions.

Counsel for the CCG, Sam Karim QC, adopted a neutral position.  He said: “As the funding body and responsible commissioner, the CCG plainly doesn’t want to commission a package that falls foul of the Sexual Offences Act or puts individual carers at risk of prosecution.  It takes the view that it would commission the care plan as outlined, subject to Your Lordship making a declaration or a decision that it was lawful”.  

The argument that it would NOT be lawful to support Z in accessing a sex worker

The Secretary of State for Justice, represented by Fiona Paterson, put the case that if carers were to provide the kind of support envisaged in the hypothetical care plan for Z, they would be “causing” Z to have sex according to a broad interpretation of s. 39 of the Sexual Offences Act, as advised by Ms Brimelow QC and Ms Graham QC.  

She argued if the law were to evolve to permit exceptions to s. 39 that rendered it lawful for a carer to facilitate access to a sex worker for someone with a ‘mental disability’, that would be a matter for Parliament, as opposed to the Courts.  

Attempting a Convention-compliant reading in the manner suggested by Victoria Butler Cole would represent a significant change in public policy – which again properly falls to Parliament rather than the Courts.

Finally, if the judge were to find that s39 of the Sexual Offences Act is incompatible with Article 8 of the European Convention on Human Rights, then (she submitted) any infringement of Z’s Article 8 rights is in pursuance of an objective and legitimate aim on the part of the government – that aim being to protect disabled people from exploitation and abuse.  Given the wide margin of appreciation afforded by the European Court of Human Rights, the Secretary of State for Justice further submitted that a declaration would serve no purpose.  

Fiona Paterson concluded, on behalf of the Secretary of State for Justice, that the application that the proposed care plan was lawful (or of incompatibility) should be dismissed; the granting of the declaration would not afford immunity from prosecution and would be contrary to public policy.

My experience of this hearing

As Best Interest Assessors for the Deprivation of Liberty Safeguards (DoLS) we are often faced with complex ethical dilemmas when trying to balance someone’s right to liberty and autonomy with their right to safety and protection when they are unable to make decisions to protect themselves. We play a critical independent role, so being able to apply legal frameworks, having a confident understanding of the law and being aware of and able to incorporate legal judgements, is important to inform our decision-making. That’s why it’s so beneficial to be able to attend these Court of Protection hearings, both in terms of developing a better understanding of the law and for the opportunity to observe how the barristers and judges approach the complex legal and ethical dilemmas they are faced with.  

Critical reflection of professional experience is a central element of professional practice, so it was interesting to observe Mr Justice Hayden reflect upon his own learning from this case; about how this case provided a window on sex work he had never encountered before and one which caused him to revaluate his perceptions of sex work. He recalled a time where as a young barrister, street prostitutes, recognised as exploited women with no real life choices, were prosecuted and fined and how this might be the public’s perception of sex workers.  This type of organisation (TLC), however, offers “a different window on sex work and requires to be identified as such”. Mr Justice Hayden talked of sensibly having to acknowledge that these are women exercising their own autonomy working within this discrete sphere and asked “would it be wrong in 2020 to assume a sex worker in this sphere is a victim, automatically, because of the career she pursues? Thirty years ago, I might have made that assumption but I don’t think it’s right to do so now”.

There were so many elements of interest for me within this hearing, but since keeping up to date with relevant case law is an important part of my role, it was great to observe how a senior judge and such expert barristers drew upon previous judgments and in this hearing so many of these were considered. 

One of the many judgments referred to was A Local Authority v JB [2020] EWCA Civ 735, which has changed the way capacity is assessed; from assessing capacity to ‘consent to sexual relations’ we now assess capacity to ‘engage in sexual relations’ and include the fact the other person must have the capacity to consent to the sexual activity and must consent before and throughout, as part of the ‘relevant information’ the person needs to be able to understand, retain, use and weigh. As 39 Essex Chambers note in their case summary June 2020 https://www.39essex.com/cop_cases/a-local-authority-v-jb-2, this is a judgement that responds to the fact ‘individuals with impaired decision-making capacity are not always (as some of the previous cases could be read as suggesting) purely passive recipients of sexual activity initiated by others, but can also be sexual beings wishing to express themselves by initiating sexual activity’.

Mr Justice Hayden also talked about his judgement in LB Tower Hamlets v NB & AU [2019] EWCOP 27 reminding us there is not a one-size-fits-all test when assessing capacity to engage in a sexual relationship. It is ‘the bespoke situation in which we evaluate capacity rather than a more general one’. Reference was also made several times by Mr Justice Hayden to Mr Justice Mumby’s famous statement ‘What good is it making someone safer if it merely makes them miserable?’ (in Re MM (an adult) [2007] EWHC 2003 Fam)

I absolutely love watching Mr Justice Hayden. He has such wisdom, warmth and humility. Speaking on ‘Becoming a judge’ at Equality in Justice Day in October 2008, Lord Judge the former Lord Chief Justice stated: 

Many qualities are required of a judge… He or she must of course know the law, and know how to apply it, but the judge must also be wise to the ways of the world. The judge must be able to make a decision. […]  Judges must have moral courage – it is a very important judicial attribute – to make decisions that will be unpopular with the politicians or the media and the public, and indeed perhaps most importantly of all, to defend the right to equal treatment before the law of those who are unpopular at any given time.’

This seems to describe Mr Justice Hayden exactly!  One of the stand-out statements for me on the second day of this hearing was his reply to Fiona Paterson when she urged the court to proceed with caution: “You’ve urged caution on everything and sometimes one has to be bold”

It was also lovely to hear Mr Justice Hayden’s appreciation of all parties for what he noted as the care, depth and quality of the considerations that had been given to this case during “the course of such a challenging year”. He closed the hearing by saying he wanted to take the opportunity to say how on a number of occasions during the case he had ‘marvelled’ at the work they had been able to do and the circumstances under which they had done it. He remarked that he had heard advocacy from every party of the highest quality, and had received very high quality written submissions.  He said he wanted to pay a heartfelt tribute to all of them. 

You cannot underestimate the additional depth of learning you acquire through observing hearings in the Court of Protection. For me, it provides that extra element of insight and understanding.  Now, when I’m reading the 39 Essex Chambers monthly newsletter, and Court of Protection judgements on BAILLI, it feels different, I feel more connected to what I’m reading and I find it helps me when I’m relaying legal information to others, supporting my team to apply outcomes of the judgments to the people we are working with and learning how to improve our practice. 

I am really looking forward to reading this judgment when it is published. It’s a really important area fraught with undeniably difficult moral issues, which will only benefit from open discussion and will be of direct relevance to all who work in adult social care.

Astral Heaven is a Local Authority AMHP and DoLS Manager and she has contributed to a number of previous blog posts for the Open Justice Court of Protection Project (e.g. here). She tweets @AstiHeaven.

Photo by Toa Heftiba on Unsplash

Waiving anonymity to promote care home visiting rights

By Celia Kitzinger, Wednesday 9th December 2020

An interim ‘judgment’ on this case has since been published here: https://www.bailii.org/ew/cases/EWCOP/2020/60.html

I’ve watched 114 hearings in the Court of Protection since 1 May 2020 and this one, concerning Michelle Davies before Mr Justice Hayden (Case No: 13677469, 23rd November 2020), is the first time I’ve been permitted to share the name of the person at the centre of the case.  

Michelle Davies, her husband Dr John Davies, and their son Kane Davies, were all named in oral submissions in court and in the documents included in the bundle.  That is not unusual.  

What is unusual is that no transparency order was made.  There is no reporting restriction.  Public observers and journalists can name Michelle when we write about the case.

The legal firm, Irwin Mitchell, who represent Michelle via her litigation friend (her husband), has put out a press release naming Michelle (as well as her husband and son). Michelle Davies has been named in numerous newspaper articles, and in radio and TV programmes (for example, herehere, and here).  The media reports are accompanied by photographs of Michelle supplied to Irwin Mitchell press office by her husband.  In one, Michelle and John Davies are dancing together at their silver wedding anniversary in 2008; another shows them celebrating John’s 50th birthday party in 2010.  In the photograph accompanying this post, Michelle Davies is pictured in Muir woods near Sausalito in California in September 2018, when the couple were on holiday together just a couple of months before she became ill.

It’s very unusual to be able to report a person’s name, or publish their photograph, in connection with a Court of Protection hearing. This is because the standard transparency order prevents publication of “any material or information that identifies or is likely to identify where any person listed above [i.e. P and their family and sometimes care staff] lives, or is being cared for, or their contact details”.  The order reminds us that “If any person disobeys the order made by paragraphs (5) to (9) (the Injunction) they may be found guilty of contempt of court and may be sent to prison, fined or have their assets seized.”

The intention of the transparency order is to protect the person’s privacy and this is what many people who become “P”s in the Court of Protection want (or would have wanted).   For others, though, their Article 8 right to privacy may be outweighed by the competing interest of their Article 10 to right to freedom of speech and open scrutiny of the circumstances in which they have been placed.

Background

On 14 December 2018, when she was only 56, Michelle Davies suddenly and without warning suffered a subarachnoid haemorrhage secondary to an aneurysm in her brain.  A week later, this was followed by a stroke.  She has extensive brain damage and since then has been cared for in hospital (for the first 11 months), then in a specialist brain injury neurorehabilitation centre, and now in a care home, pending suitable adaptations to the family home and a care package to enable her to return there.

From the moment of her injury, John Davies spent at least 3 hours a day at his wife’s side, and up to 6 hours some days.  “I didn’t miss a day for 15 months”, he told me.   

That all changed on 17th March 2020 due to the public health crisis. 

In addition to watching the court hearing as it unfolded, I was also privileged to spend two and a half hours with John Davies (via Zoom), listening to his account of what’s happened.  

He described the time he had spent with his wife before Covid-19 – taking her out, helping her physical recovery with passive movement of her limbs, talking to her, and watching television with her – all of which he sees as an essential part of Michelle’s neurorehabilitation and psychological health.  Then, between 17th March 2020 and 6th July 2020, the placement permitted no visits at all, and very few video calls.  In July 2020, when pubs, shops and restaurants started opening up again, there were three weeks when visits were allowed twice a week for 30 minutes each time.  Her husband described how Michelle was wheeled outside onto a patio to be with her husband and son (“she was absolutely beaming”).  But then on 31 July 2020, Manchester moved to higher restrictions and all visits were ceased.  No window contact was permitted and contact reverted to video calls (4 times a week for 30 minutes) for the next 15 weeks.  This, her husband believes, was hugely detrimental to Michelle’s rehabilitation, and to her mental health.  

John recognises that visiting restrictions have the legitimate aim of protecting public health but he believes that it is wrong to impose a blanket policy on everyone.  Instead, individualised care plans, including visiting arrangements, should be drawn up for each resident.  Michelle Davies is “a darn sight younger’ than most care home residents and (apart from her brain injury) she is in generally good health.  She’s also already had Covid and the evidence suggests she was likely to have had immunity from reinfection for some months after recovering.  He considers the visiting restrictions “hugely disproportionate” . He wrote first to his MP,  who wrote back to say he’d passed it on to the Department of Health and Social Security – but there was nothing subsequently from either the MP or the DHSS to improve the situation. He then discovered  the public letter from Mr Justice Hayden about permitted contact in care homes.  “I thought, ‘ooh, that makes it sound as though we should be able to visit, and that didn’t tally with my reality”, so he wrote to the judge himself.  The court signposted him to the potential to seek legal advice, which in turn led to the application before the court.

A week before this hearing, Michelle had been moved from her previous placement to a new care home (closer to her husband and son), and her room is on the ground floor, permitting window visits.  Because of the move, Michelle is in quarantine for two weeks.  John described the window visits as “simultaneously delightful and frustrating” because Michelle doesn’t understand why her family can’t be in the same room with her: “when you’re on a video call you understand that you can’t be physically close, but when you’re a couple of metres apart with a window in between it’s more frustrating”.  Later, when I spoke to him, he said “Michelle’s not had a hug off her husband for 9 months. It’s diabolical.”

The window visits from family and friends had also revealed some problems in the care that Michelle is receiving in the new care home.  On one occasion friends had looked through the window only to find Michelle on the floor, having fallen out of her chair – apparently the fact that she needs to be belted into her chair had not been communicated to the new care home (“I was distraught” said John).  On another occasion, John discovered that his wife had been left alone in her room with the door closed to eat her lunch – but she is at high risk of choking and needs to be monitored while eating: he immediately ensured that someone came in to be with her.  His visits are more than simply social occasions: they are (as counsel for Michelle said) “a check, a balance, a monitor, an opportunity to communicate Michelle’s needs as this new home gets to know her, from the wealth of information that her son and husband have about her”.  Her husband is, said Mr Justice Hayden, “the conduit by which institutional learning is conveyed from one institution to another” – and that makes his visits important for Michelle’s wellbeing.

At the hearing, Lorraine Cavanagh QC, as counsel representing Michelle Davies (via John, as her litigation friend) asked the judge to order that it is unlawful for Michelle to be prevented from having daily face-to-face contact with her husband and son, and that from the end of her quarantine period she would be permitted face-to-face contact with John and Kane Davies for no less than 1.5 hours per day.   She asked him to order a risk assessment for contact between Michelle and her family members, a contact plan, statements about the various options for face-to-face contact, and all documentation concerning Michelle’s Deprivation of Liberty (some periods of which seem to have been unlawful, since it appears that no urgent or standard authorisation was in place). She said in particular that Michelle Davies’ Article 8 rights (respect for private and family life) were engaged in respect of her marriage of 37 years, and her relationship with her son and her parents.

On behalf of the local authority and clinical commissioning group Victoria Butler Cole QC suggested a way forward that joins the care home as a respondent, since the decisions being challenged are those made by the care home and not by the statutory bodies.  They will be notified of the proceedings, and joined as a party and required to file evidence and a position statement setting out (among other things) the arrangements they propose to put in place for visits between Michelle and her family, the basis of their decisions about contact, and their reasons for asserting that their policies and arrangements for contact do not violate the Article 8 rights of Michelle and her family.

Michelle Davies’ case will be back in court again on 11 December 2020. 

Waiving anonymity

The court case brought on behalf of Michelle Davies has the potential to change visiting rights for many people in care homes across England and Wales.  It’s for that reason that John and Michelle Davies want their names to be public.  

Many people in care homes, and their families are affected by restrictions on visiting similar to those endured by Michelle Davies and her family.  The submission on behalf of Michelle Davies described her case as “a paradigm example of the personal desolation caused by the application of blanket visiting policies”.

John Davies referred me to two campaigns concerned with this issue: Rights for Residents (“a campaign to end the current inhumane restrictions to visiting loved ones in care homes”) and John’s Campaign (supporting “the right of people with dementia to be supported by their family carers”). 

Although Michelle Davies was, her husband says, “a person who valued her privacy”, she is also “a very caring person and had a very strong sense of doing the right thing, especially where it would improve someone’s lot”.  He said that he “believes strongly that Michelle would want for something positive to come out of this dreadful situation that she finds herself in and this case presents an opportunity for that to happen”.

Twenty-three paragraphs (10 pages of the submission by Lorraine Cavanagh on behalf of the applicant) are devoted to arguing the case for ‘transparency’ and for allowing Michelle Davies’ name to be publicly reported.  She submits that the public has a right to know what is being done in its name in the Court of Protection and that this is strongly in play at a time when the public health crisis has imposed on the general population considerable restrictions on their rights and freedoms, along with growing campaigns to overhaul the ‘chaotic’ and ‘stringent’ arrangements for visiting loved ones in care homes.  And she argues that Michelle Davies herself has an Article 10 right to “… freedom of speech and open scrutiny of her circumstances, particularly important where, as here, her marriage and private relationships are being profoundly deprived by the operation of policy.  This is specific to Michelle Davies’ right to have her cause made public in order to attempt to avail herself of the power of ‘forensic sunlight’ to assist her cause but also, to assist the cause of others to bring about change and public pressure on theGovernment.”

The use of Michelle Davies’ name (as opposed to anonymising initials) is an important part of publicising her story, because “stories about particular individuals are simply much more attractive to readers than stories about unidentified people, It is just human nature” (Lord Rogers in Re Guardian and Media Limited. [2010] 2 AC 697)

The question of whether or not Michelle Davies could be named occupied around half an hour of court time.  Mr Justice Hayden asked to speak to John Davies directly about the issue.  He said: 

A named individual rather than someone referred to with just their initials attracts a much greater degree of public interest – it makes an issue become real to the public.  But being the focus of public attention can bring its own stresses and be very wearing and burdensome.  Ms Cavanagh tells me you’ve thought about this, but I want to hear from you.”

John Davies explained how he’d assessed Michelle’s past and present wishes over the course of two video conversations with her.  Michelle has a communication impairment due to her brain injury: it’s not clear to the professionals how much she understands – though John thinks she understands everything – and certainly her ability to respond is limited mostly to single words.

 “My starting point was my long-term understanding of Michelle as a person.  She is a quiet person, never one to put herself in the public eye.  But she is a very caring person and has strong feelings about helping others and when I said to her there were potentially thousands of people up and down the country like us, not able to see their relatives, she said “aww, aww” in a tone that showed sympathy and her facial expression was very upset.  I said ‘has that upset you?’ and she said ‘yes’.  I said there was the possibility of legal action on this and as soon as I said ‘legal action’ she went, ‘oooh!’, her way of expressing that something has caught her attention. And I said, ‘but we need to think carefully about using your name – I don’t want to cause any distress to you. I said we might be able to assist people by using her name and photo to publicise our case and she said “yes”.  I repeated the same process the following day and I got the same responses.  So, I had a discussion with our son, and we were both of the same opinion.  Michelle has had an absolutely awful thing happen to her and her nature is such that she would want something positive to come out of it if that were at all possible, and this seemed like an avenue through which that could happen.”

Mr Justice Hayden pointed out that the press, social media, and bloggers can sometimes be “irresponsible” in reporting on a case, and there was a discussion about how John and Kane might manage negative comments on Facebook and Twitter.  John’s view was that “we’ve got the resilience to deal with that. A few comments from some ill-informed individuals won’t slay me”.  Journalist Brian Farmer, who was in court, was consulted and agreed that “a story about someone who is named will attract more attention”.  Counsel for the Trust and CCG did not oppose it, and so Mr Justice Hayden indicated that he would not seek a reporting restriction concerning Michelle’s (or her family’s) name. 

Most persuasive was the fact that she had worked so hard to improve the lot of others during the course of her working life, and outside it. She would want to do the maximum to help those like herself during these difficult circumstances, and her husband considered she would recognise that she would be most likely to achieve that by being ‘Michelle Davies’ rather than by being anonymous”. 

This has been borne out by the subsequent media publicity, which has included BBC, ITV and press interviews.   One of the quotations from John Davies that has been used on several occasions in the press is this: 

There has been a failure to treat Michelle as an individual over the last eight months. Instead, she has been dealt with as one member of a huge amorphous group of people living in care homes. These people have names, families and lives. This one is called Michelle Davies.”

What’s ‘going public’ been like?

When I spoke to John Davies, he told me he’s “not had a single negative comment” from journalists or from the public – and he’s had positive feedback from strangers who’ve messaged him on Facebook to say they’re in similar situations and they’re “so glad someone was brave enough to challenge things”.  

If we’d said we wanted to stay anonymous, everyone would have said, ‘of course, yes’, but I did a cost/benefit analysis and I could see that there would be a massive benefit from the extra publicity if we let our names be used.  People can’t relate to ‘Mrs X’. But people become emotionally engaged if you’ve got a real name, and a photo. … If something good can come out of this horrible experience, we will take the risk of not having anonymity.”

He is clear about what he won’t do for the media.  He won’t share any photographs of Michelle since her brain injury “because that’s not respecting her personal dignity, and that’s not how I want people to think of her”.  He’s had “a few attempts from journalists to try to identify the care home” and has tried to prevent the media knowing where Michelle now lives. He’s declined requests to be filmed standing outside the window of her care home and has become “slightly paranoid” that journalists might follow him when he goes to the care home: in our zoom conversation he mimicked anxious glances over his shoulder as though checking whether he was being tailed.  “I’ve never been in this situation before, so I don’t know what to expect”. 

When I asked him if there was anything the media hasn’t reported that he wishes they would, he told me about his quadruple heart bypass.  He’d been “fit as a butcher’s dog”, played rugby for thirty odd years, was doing high intensity gym classes every week and was “the picture of health” when he found he couldn’t breathe in as deeply as normal and went to the GP about it.  After a series of tests, he was told he needed major heart surgery, and was off work afterwards for five months. 

 “Michelle nursed me through recovery. She demonstrated absolutely how much she cared for me. That’s when you find out – when you’re in adversity.  It’s part of my motivation for wanting to do everything I can for Michelle.  And once I’d recovered, I thought our challenge was done. Then just a few months later, Michelle had the aneurysm.”

One of the things the couple had planned to do, after John’s heart bypass, was to take out Lasting Power of Attorney, so that if either of them were to lose capacity to make their own decisions in future, the other would be able to make decisions on their behalf.  (‘Next of kin’ do not have decision-making rights over incapacitated adults.)

 “It was one my list of things to do after what happened to me, but we hadn’t got round to it. I wish we had. It would have made life so much easier for us.  And although I got to be Michelle’s RPR [Relevant Person’s Representative] and then her litigation friend in court, I still don’t have the Deputyship in place – either for health and welfare or for finance – though I started that process back in May.”  

He’d recommend to everyone reading this blog post that they should appoint Attorneys for both Health and Welfare and for Property and Finance, as soon as possible, and (obviously) before they are needed.  You can’t create them after you’ve lost capacity for making these decisions – these instruments have to be set up in advance.  (Information about how to do this is available on the government website here.) 

So far, ‘going public’ about what’s happened to Michelle has been less stressful that he expected. He explained that it helps that he’s a (recently retired) academic professor with a raft of skills in public speaking and analysis developed during his work.  He’s even been in court before, in Employment Tribunals, and found the Court of Protection a much better experience, and “far less intimidating”.  He had anticipated a more “adversarial” courtroom experience but found in fact that “everyone was working together to figure out what was best for Michelle”.  In a context where ‘remote’ courts (conducted via video-platforms) are sometimes criticised, it’s worth reporting that John Davies valued that experience: “sitting in my office at home, being able to nip out to get a glass of water or a lunch time bowl of soup in my own kitchen – it’s all a bit more chilled than a physical courtroom”.  

Anonymity, Freedom of Expression, and the Court

Many people who become “P”s in the Court of Protection would not want the kind of publicity that John Davies is certain Michelle would have wanted – and does want – for herself.  But others do – and for many of the same reasons that John and Michelle do.  Very often a case is in court because something has gone wrong – and it may well be something that has gone wrong not just for “P” but for others in P’s situation.  P and their family may hope that making it public they can help to improve other people’s lives.  

Yet often it feels as though the standard ‘transparency order’ is applied without really considering whether P would want their identity concealed in this way.  

The person’s name is almost always used in public court hearings,.  But the documents in the bundle  – the position statements and skeleton arguments – mostly use initials only.  And when we write about the hearings, we cannot use the person’s real name (or the names of their family members) even though we usually know those names.

So, as you can see from other blog posts for the Open Justice Court of Protection project, we have to find another way of referring to the person at the centre of the case.   Sometimes we simply use “P” (e.g. “When P is in prison”), which is how such people are referred to in the Mental Capacity Act 2005, in the Court of Protection Rules and in legal analysis  (such as this article by Alex Ruck Keene and colleagues).  Sometimes we use initials assigned by the court (which may or may not be the person’s real initials): AL,  KBF, or AB. Other times, we invent pseudonyms (like “Michael”,  “Andrew” , or “Barbara” in recent blog posts) to try to foreground the person as a unique individual.  

Some lawyers are concerned about the “dehumanising” effect of referring to someone as “P” or by their initials.

In my experience it is now relatively unusual for the lawyers and judge to do other than refer to the person by the name they – or, if they’re not able to participate, their family – prefer: sometimes a first name, sometimes a title and surname, sometimes a nickname or – for a trans person – a new chosen name (only his mother, giving evidence, repeatedly tripped up with name and pronouns).  My experience, like Oliver Lewis’s, is that Mr Justice Hayden normally insists on the use of real names:  just once when a person objected to the public use of her name, did he and the barristers refer to and address her throughout as “Ms P”, as was her preference.  

Many of the position statements I have been sent have not been anonymised, so they, too, contain the person’s real name: the logic of not anonymising them is that I know the names anyway (from having been in court) and I am bound in any case by the Transparency Order, so cannot reveal the person’s identity to anyone else. 

There is relatively little concern, however, about what feels to me, as an observer, like a routine (even ‘default’) acceptance that P herself should not be identified in any reports of the case. The exceptions stand out,  One was  Paul Briggs, whose real name can be used largely because his wife Lindsey Briggs talked extensively to the media about her husband (catastrophically brain injured by a dangerous driver) well before the case ever reached the Court of Protection – so he was already publicly identifiable: for families who believe their loved one would want publicity, making sure to launch publicity in advance of an application to the court might be a sensible strategy.  Another was Manuela Sykes a campaigner with a history of social activism, now with dementia and prevented from returning to her own home, who strongly wished for her situation to be reported in her own name.  In an insightful judgment, which authorised use of her name, District Judge Eldergill wrote:  

“She has always wished to be heard. She would wish her life to end with a bang not a whimper. This is her last chance to exert a political influence which is recognisable as her influence. Her last contribution to the country’s political scene and the workings and deliberations of the council and social services committee which she sat on.”

These are the exceptions – departures from the fact that “ordinarily” there’s a standard order that P will not be named publicly. As I watched this hearing before Mr Justice Hayden, I was dismayed to see how much work was needed (those 23 paragraphs of submission and half an hour of court time) to enable Michelle’s name to be used.

For myself, I hope very much that I am never a “P” in the Court of Protection.  I have done everything possible to make this unlikely.  I have an Advance Decision, an Advance Statement and have appointed both a Health and Welfare Attorney and a Property and Finance Attorney. (Check out the charity, Compassion in Dying, for more information about all these options.)  So, if I am ever a “P” in the Court of Protection, something will have gone dreadfully wrong.   I would want it to be made public, and I would want to be publicly named. I have said so in my Advance Statement – and would advise anyone who feels likewise to do the same.  

Of course, many people value the ‘transparency order’ that protects their identity from being publicly reported.  For others, though, it is an impediment to having our voices heard.  As Jeremy Bentham once famously said, “publicity is the very soul of justice”.  The use of P’s real name is still one aspect of “publicity” that individuals and families caught up in the Court of Protection may need to advocate for – as John Davies has for his wife Michelle, in recognition of her commitment to helping others who, like her, have been deprived of visits from family and friends during the pandemic.

Acknowledgement: Thank you to Dr John Davies for talking to me about the challenges his family is confronting, and for sharing the lovely picture of Michelle Davies that illustrates this article.  I am grateful to Mathieu Culverhouse and David York of Irwin Mitchell for alerting me to this case and for putting me in touch with John Davies.  I am also grateful to Lorraine Cavanagh QC (Counsel for Michelle Davies) and Victoria Butler Cole QC (Counsel for Wigan Council and NHS Wigan CCG) for making their position statements available to me.

Disability, Social (In)visibility, and the Importance of Open Justice

By Gill Loomes-Quinn – 7th December 2020

Editorial Note: This article was first published on Gill’s blog on her own website (voicespaces.co.uk) for International Day of Persons with Disabilities on Thursday 3rd December 2020

Today – 3rd December 2020 – is designated by the UN as International Day of Persons with Disabilities (#IDPWD2020) and this year, we as a global society are asked to focus on ‘invisible disabilities’.

Invisible to whom?

‘Invisibility’ is a facet of disability, and of disabled experience, that is all too familiar to those of us within disabled communities, as we are aware of the challenges experienced by those of us whose impairments do not cause the physical deformities, scars, or other outward signs that the general public seems to expect of ‘disability’. Indeed it seems too that the rest of society is slowly catching up to the existence of such impairments – with many accessible toilets in shopping centres, supermarkets, and coffee shops having signs on their doors reminding customers that ‘Not All Disabilities Are Visible’. This certainly seems to be a concern of the moment.

Such growing awareness of the existence of ‘invisible disabilities’ is to be applauded, if it prevents seemingly ambulatory disabled people with Blue Badges (parking permits entitling the holder to use accessible parking spaces) from being harassed or abused in car parks, or enables people to access facilities and adjustments to make life easier, without the anxiety that requesting or using such measures will be met with disbelief or hostility by self-appointed gatekeepers. But, as with so much of how the non-disabled world views ‘Disability’, the concept of the ‘Invisible Disability’ seems to have been constructed as an individual issue, located within a disabled person’s body-mind, and in a socio-political vacuum. The issue rests with the subject, not the viewer.

However, when I think of ‘Invisible Disability’ I consider another aspect of ‘invisibility’. I think about how much of my life as a disabled person, and how many of my experiences relating directly to my multiple impairments, seem to exist in a parallel world that is invisible to – or hidden from – non-disabled society. As an autistic woman who is also a wheelchair-user, I straddle the boundaries between ‘invisible’ and the ‘ultra-visible’ impairments, and I am acutely sensitive to the ways in which the ‘Able Gaze’ can shape one’s experience of disability (I have written about it – here ). But I am also mindful of a different aspect of the ‘invisibility’ of disability.

Social Invisibility

I remember discussing a trip to London with an acquaintance. I complained about unreliable transport, and about how complicated I found it trying to establish whether specific train or Tube stations were accessible. She replied with surprise – ‘Doesn’t everywhere have to be accessible now?’. I have similarly been met with shock when I tell friends I am charged on average 2.5 times the standard rate for a taxi journey. Conversely, members of the public engage me in conversation and make it clear that they assume I live in Local Authority funded accommodation, I am not in employment, and that the benefits and social care support I receive are considerably more extensive than those I do in fact receive. Disabled existence is a mystery to large swathes of non-disabled society, and the challenges and limitations that inaccessibility places on life with impairments are invisible to the mainstream majority. For some disabled activists, such as myself, sharing our experiences (such as via blogs or social media) is a key aspect of our activism – precisely as an attempt to make the invisible visible – but this comes at a cost, and it is always incomplete. I am relatively open about my impairments and their impact on my life, but when it comes to the most challenging impacts – the moments of despair, of disgust, of hopeless, defeated sobbing: the moments when existing in a world that is not designed for me, that views my presence in it as an unfortunate encumbrance, seems like too much, like too high a mountain to climb – those moments remain hidden. They are invisible. And while they remain invisible, I am on my own with them. They are my challenges alone.

Open Justice – A step towards liberation

It is my view that society should be made aware of how it treats its disabled members – and that ‘social invisibility’ is a form of willful ignorance, and an unjust privilege. Oppression thrives in darkness, and it is most efficient and effective in silence and in isolation. It is for this reason that I am passionate about the importance of transparency in terms of the legal and political policies, procedures, and bureaucracies that shape disabled existence in our society – because shedding light on such structures is one way in which they can be held to account, and injustices embedded within them can be dismantled.

This is why I am proud to be a co-founder and co-director (with Celia Kitzinger) of the Open Justice Court of Protection Project (openjusticecourtofprotection.org) – We promote transparency in the Court of Protection: a court that can impact significantly on the lives of disabled people who lack the mental capacity to make key decisions in their lives. The public has for some years had the right to observe hearings in the court, but this can be a challenge for people without relevant legal understanding or knowledge of court procedures, and public and press attendance at Court of Protection hearings has been minimal. We therefore support people to access and observe proceedings – e.g. by highlighting the details of hearings people may wish to observe on our website (our ‘Featured Hearings’), by providing information (our ‘Observer Resources’) and by publishing observations, along with posts on topics of interest, on our blog (we have posted over 70 blogs from more than 65 contributors since 15th June). In this way, members of the public – including health and social care workers, lawyers, educators, family members and advocates for disabled people, and ‘interested individuals’ – have been supported to observe the ‘law in action’, and to write about, thereby highlighting, the details of court proceedings, and of the social and political issues affecting the disabled people at the heart of them.

These have included:

  • A young man called ‘Michael‘ with complex needs, for whom no suitable accommodation had been identified.
  • The failure of expert evidence as to whether ‘Barbara‘ had the mental capacity to decide where she lives, the care she receives, and with whom she has sex.
  • Whether a person with Dementia should be medicated covertly.
  • Whether ‘AB‘ (who has Anorexia) had the capacity to decide whether or not to be tube-fed.
  • Questions of accountability for the rape of a woman with ‘significant learning disabilities’ (‘KB‘)

Many decisions of significant impact in the lives of disabled people are taken away from society’s sight. Decisions about my own life – my education, my employment, my access to healthcare, and to benefits – have taken place in hospitals, or local government offices, without public access, and often without me being present. Where we have the chance to shed light on, and to scrutinise decisions that shape the lives of disabled people, I suggest we have a strong moral imperative to take this chance. It is by doing so that we challenge the social invisibility of disabled people, and of the experiences that shape our lives.

And social visibility is a powerful step towards liberation.

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

Photo by Melanie Wasser on Unsplash

A parent’s reflection on “Michael” – a young man with complex needs and no suitable placement

NB, 3rd December 2020

The hearing I observed (COP 13677686) was before Mr Justice Peel on 18th November 2020.  I chose to observe this hearing because I’d read the blog by Caroline Hanman describing an earlier hearing about “Michael” – a young man with autism, learning difficulties and ADHD.  At that last hearing, the judge authorised continuing deprivation of his liberty in an unsuitable placement, pending this hearing, at which it was hoped that a suitable placement would have been found. 

Sadly, at this hearing it was reported that no suitable placement had been found and the judge approved Michael’s move to another temporary placement which was already known to have risks for Michael, because there were no other options available.  See Caroline Hanman’s follow-up blog for a description of what happened, and how an unsuitable placement was approved by the court.

I want to reflect on what I observed in the hearing of 18th November 2000 from my distinctive professional and personal perspective.

I have a career background of working in services for adults with learning disabilities, in particular those who are considered ‘difficult to reach’ because of their behaviour or isolation. Around 10 years ago I became a full-time carer for my son (about the same age as Michael) who has a complex mental health condition and we’ve experienced periods of full-time care services.  Many of the problems faced by Michael and his family resonate with my own experience.

Up until August it seemed that Michael had been living in a property with a staff team and had been managing well. At some point in July the manager left and it was after that Michael’s behaviour started to deteriorate. This raised a big red flag for me, as surely it would be helpful for Michael if someone found out exactly why his behaviour had changed so dramatically.  I imagine listening to his parents might provide some of the required details. 

Michael is experiencing a lot of disruption.  By the time I’d stopped huffing and shaking my head at the screen, I realised he would have been in five different settings within just one month: (1) his original property until 2nd November, (2) a hospital, (3) a place of safety, and then (4) the psychiatric unit where he is currently held.  On the day of the hearing, he was being moved to (5) another interim placement.  The plan is that this too is only temporary until he turns 18, so next year he will be moved again.  

I wondered how on earth my child would have coped with this situation (he wouldn’t) and how stomach churningly awful this must be for his amazing parents.  At some point a comment was made that ‘his parents visit openly and freely’. He’s not a prisoner –  I felt the stigmatising language like a sting!  

When counsel acting for Michael via the Official Solicitor (Mr Patel QC) sought a contingency plan if the interim placement broke down, the representative for the local authority (Mr Mahmood) said they would simply replace the care team! Without commissioner/social worker planning, oversight and staff training, it seems that the same mistakes could well happen over again.  I wondered how Michael might respond to that sudden shift in a whole staff team. Could the risk level increase because of the lack of planning? 

Apart from the direct staff team, I wondered, who is coordinating his care, understanding his needs (someone qualified in his diagnoses), training staff in his needs and ensuring that his needs are met? Where have CAMHS (the Child and Adolescent Mental Health Services) been? This young person should have been allocated a multi agency team to start planning his care. Where were they? Given that P has a diagnosis of autism, I wonder what support is available to him in the Autism Strategy, where he lives, as per the Autism Act 2009, and to what extent this has been explored.  He surely also meets the criteria of Care and Treatment Reviews (CTR) as part of ‘Transforming Care’ as he’s obviously at risk of ending up in a hospital setting or Acute Treatment Unit. An independent panel of experts in a CTR, including experts by experience, may have created a turning point for Michael earlier on Unfortunately there hasn’t been a lot of ‘transforming care’.

I did wonder why the CCG doesn’t seem to have been involved with Michael’s care (or any forward planning for him).  Considering Michael‘s multiple diagnoses and complexity of needs it would have meant that health services must have been involved at some point, to diagnose, so what happened? Was it a case of ‘signing him off’ and what I call ‘service ping-pong’ where no agency wants responsibility so keeps refusing access, all the while needs deteriorate?

At no point during this hearing was a transition phase from children’s to adults’ services discussed. Once Michael turns 18, CAMHS will no longer be involved nor will the children’s social services team. He will still be funded by the same LA, just a different pot of money. There was no mention at all of an EHCP (an Education Health and Care Plan can go up to the age of 25). What does Michael’s day consist of? Is he receiving an education? Has he received any input from psychologists or other therapists? Could such practitioners have helped with planning services and training staff to support his needs? 

I have been my son’s care coordinator for many years. In our experience there is little or no communication between agencies. Even though I worked in health and social care services for years, I found that the system is like a maze and sourcing every provision has been a battle. Young people fall through the net. I hope adult services offer Michael the chance of stability and safety in his life and suggest that the next care coordinator ensures that his voice is heard and his family are involved. 

NB wishes to remain anonymous to protect the identity of her son. She tweets @nb87120292

Photo by Michael Dziedzic on Unsplash

An unsuitable placement approved by the Court

Caroline Hanman, 2nd December 2020

This hearing (COP 13677686, before Mr Justice Peel, 18th November 2020) was to decide where “Michael” should live.  

He’s currently living in manifestly unsuitable accommodation to which he was moved after a crisis when he absconded from his usual living accommodation, was aggressive towards carers and caused damage to a neighbouring property. It took seven police officers to restrain him. They conveyed him to hospital, from which he was subsequently removed to a “place of safety” and then to a psychiatric unit for teenagers with severe mental health problems, which is where he was on the date of this hearing.

Michael has autism, learning difficulties, ADHD and is described as having “very challenging behaviour”.  This latest placement isn’t appropriate for him.  He’s been there since 6th November 2020 (so 12 days by the date of the hearing).  The decision of the court was to move him, that afternoon, to yet another placement which – counsel had acknowledged from the outset – is not really suitable for him. It was a disappointing outcome.  As the judge said in his oral judgment: “None of this seems to me to be entirely satisfactory”.

This was the third Court of Protection hearing about Michael in 11 days.  The first one was an urgent hearing (via email) that resulted in an emergency order at 00.23 on 7th November 2020, authorising Michael’s deprivation of liberty in the psychiatric unit.  The second hearing (which I blogged about here) was an urgent directions hearing before Mr Justice Cohen on Tuesday 10th November 2020.  At that hearing it was decided that Michael should stay in his totally inappropriate placement – because nowhere else could be found – pending today’s hearing.

Today’s hearing, the third in the series, was to approve an order for Michael to move to another – as it turns out interim – placement, pending a fourth hearing in mid-December. 

I’ve found it useful to follow up on this case across two hearings.  It’s given me the opportunity to see how the parties involved have responded to previous Court of Protection directions, and to see how things may have changed for the individual at the centre of the proceedings, and what, if any, lessons have been learned by those involved.

“The only option available”

As is usual, the hearing began with an introduction on behalf of the applicant – in this case, Mr Anderson, representing the current care provider.  He made it absolutely clear that Michael could not stay where he is and that his place is needed for another person for whom it is more appropriate.  He pointed out, too, that it was only due to unusual circumstances (described in my last blog post) that his client had ended up as the applicant, and really it was the responsibility of the Local Authority to take this forward.  (This was generally accepted and the current care provider was discharged as a party at the end of the hearing.)

The representative for the Local Authority, Mr Mahmood, said that, immediately after the last hearing, “extensive efforts were made to ensure compliance” and that “work was done evenings and weekends and so on”.  He emphasised that “every conceivable option has been considered” but in the end there was only one option: it’s a holiday let – a residential home that Michael has stayed in before, with 5:1 staffing from the same care providers.  The plan was to move him today, “in an unmarked ambulance, in daylight hours so that when he arrives he can see the property he’s going to be living in”.  Michael’s parents were part of the transition plan: his mother “will wave off Michael and follow the ambulance in her own auto vehicle and will then meet Michael at the [new property]”.

There were serious concerns raised about the LA’s proposal to return Michael to a community setting when it was clear that the previous arrangements had broken down to such an extent that s136 of the Mental Health Act had been used to remove him to a place of safety.  On behalf of Michael (via the Official Solicitor), Mr Patel QC explained that Ms Webber (previously Michael’s Accredited Legal Representative and now his solicitor) is unable to agree to the order proposed by the Local Authority because it effectively maintains the same care arrangements that were in place when the serious incident took place on 2nd November.  Moreover, Michael stayed at this same holiday let earlier this year when work was being done on his usual accommodation and during those few weeks, there were two incidents of harm to others and one destruction of property: “so in that context the Official Solicitor is concerned we’re putting in place for Michael what was in place before, which wasn’t sufficient to avoid incidents”.  Mr Patel QC said, succinctly: “The local authority is proposing to send Michael back to a property where he cannot be safe. But we can’t object to the proposed course of action because he can’t stay where he is and there is no alternative placement”.  The Official Solicitor is pressing the local authority to come up with a contingency plan if things go wrong for Michael before his case is next back in court – but this has yet to be agreed.  

Parental Concern

Michael’s parents were both present in court and his mother has become a party since the last hearing.  Although she was unrepresented, she was supported by her husband.  He made it clear that as parents they felt they had been “pushed into a corner”.

We accept that Michael can’t stay where he is, and we have no options.  We understand the pressures they are experiencing with Michael there, but we feel options should have been explored sooner, given the concerns we raised back in August about the change in care plan.  This should have been followed up a long time ago.  It’s just all come to a head today.”

Michael’s parents had raised various concerns about the holiday let placement in their Position Statement – including the fact that it is a relatively small property with limited garden space, as well as the incidents that had previously occurred when Michael had temporarily stayed there. The parents also expanded on some unresolved concerns regarding the efficiency and management of the agency involved in Michael’s care. 

I found it staggering that the concerns raised by Michael’s parents in August 2020 were still unresolved three months later and the Local Authority, despite having described Michael’s parents’ input as “invaluable” in Court had apparently failed to address their longstanding concerns about Michael’s care arrangements. 

Oral Judgment

In an oral judgment, Mr Justice Peel said he wanted to “pay tribute to the extraordinary devotion and care” of Michael’s parents.  He was less complimentary about the local authority.  

Why is it that prior to November 2020 no applications in relation to Deprivation of Liberty were made?  The local authority has provided the explanation that the parents were consenting to arrangements in relation to Michael, who is not Gillick-competent, and therefore no application was thought to be required. But it’s accepted that applications should have been made at least from September 2019 onwards. There has been an appropriate acknowledgement of past failings.  Planning for when Michael reaches the age of 18 should have been undertaken for some considerable time.  I’m not sure from my reading of the documents that planning was taking place – and it is now taking place vigorously because of this application.  It should have been addressed by the local authority some time ago.  That is one of the reasons why we are in the position today where all parties recognise that there is only one option available.  I suspect that with greater planning in advance, other options might have been located or developed.[1]

The judge was satisfied (on a s. 48 basis) that Michael lacks capacity to make his own decisions about the conduct of the proceedings, where he should live and his care and support package and on that basis he approved the order for the interim placement – although he also asked the LA to sort out a contingency plan to cover what will happen if the interim placement breaks down. He directed that the case should return in mid-December (preferably before him), because the court needs to scrutinise the LA’s plans (“which it seems to me are to an extent in their infancy”) for what should happen once Michael turns 18.  He concluded his judgment by saying, “Above all, I would encourage the LA to continue the work that is now taking place and to focus on Michael’s needs going forward.”

A sad and uncomfortable experience

Although I was impressed with how Mr Justice Peel managed this hearing, observing it was a sad and uncomfortable experience.  There are so many things that sit uncomfortably at a professional level. Michael is a young person with evidenced care and support needs, yet the LA failed to make a Court of Protection application to deprive him of his liberty, incorrectly seeking parental consent for a decision that properly needed legal authorisation. Mr Mahmood’s explanation that, as Michael was aged under 18, the LA had (incorrectly) determined that his parents could consent on his behalf sounded very shallow, given the quite obvious necessity for professionals to work within the law and the need for social workers to practise in ways that actively uphold and promote human rights.  In my opinion, this fundamental breach of legal duty raises serious concerns about possible wider malpractice that may exist, and I have been reflecting on this matter since the hearing. 

For example, Michael is under the age of 18 so there is still a legal requirement for him to participate in some form of education or training, yet no reference was made to Michael accessing any form of education or training at any point in either of the two hearings I observed.  I am left wondering if (as I would expect) Michael was supported through an education, health, and care plan (EHCP). If so, what was in it, how was it being informed at a specialist level, and what (other) agencies and professionals were involved. I found it quite perverse that the LA fleetingly mentioned that the CCG (NHS Clinical Commissioning Group) was likely to become involved once Michael is aged 18 and I could not help wondering how Michael’s care plan was being commissioned and why the CCG had not had any previous input.  

The judge seemed less than impressed when it became clear that the legitimate concerns raised by Michael’s parents three months previously had still not been seriously addressed by the LA despite this being the third Court of Protection hearing that had taken place on an urgent basis. If a judge can quickly grasp the nettle and respond appropriately, it seriously begs the question why the professionals involved with Michael are seemingly not demonstrating the same level of concern and why the only care ‘option’ available to Michael is one that obviously carries identified risk and is heavily dependent on the ongoing goodwill and support of his parents.

I felt quite sad for Michael and his parents because it is obvious that he has struggled during his young life but nobody outside the family seems to understand him and there seems little will to improve things. Although reference was made to Michael being supported by a different mental health team once he is 18, there was no evidence of how Michael is currently being supported in what should be a carefully planned transitional period. Michael’s voice was again, not being heard during this hearing, even though his views and wishes should be paramount and the judge was (I believe) at pains to ensure that this happens by the time of the next hearing.

It’s incredibly sad and humbling to observe these Court of Protection hearings. I really hope things work out for Michael and his family soon. I will try to attend the next Court of Protection hearing and write another follow up blog if I can. 

Caroline Hanman is in the process of returning to Social Work following a career break, and will shortly be taking up a post in a local authority Adult Social Care team. She tweets @CarolineRTSW

Photo by Cindy Tang on Unsplash


[1] Quotations are as close as possible to what was actually said in court but since observers are not allowed to audio-record hearings they are unlikely to be verbatim.  Thank you to Celia Kitzinger who also observed this hearing and helped with making the quoted material as accurate as possible.

Challenging Reporting Restrictions in the Court of Protection

Brian Farmer, Tuesday 1 December 2020

Editorial Note:  We recently published a blog post about a case concerning a learning-disabled woman who had been raped and become pregnant.  The hearing was about whether a caesarean section was in her best interests.  As is usual in Court of Protection hearings, the Transparency Order required her identity to be kept confidential: she is referred to only as “KB” and nothing can be communicated that might reveal her identity, or that of her family, or where they live.  Unusually, though, the name of the NHS Trust and Local Authority responsible for KB’s care, as well as the name of the police force investigating her rape, were also covered by the Transparency Order.  This was because of the risk of “jigsaw identification” – whereby people are able to piece together information from different sources, including the published judgment, media reports of the court hearing, and possibly future reports in the criminal courts if the rapist is apprehended – and so identify a protected person in that way,  It is relatively unusual for the Court to forbid identification of public bodies such as NHS Trusts and Local Authorities – not least because there is an obvious public interest in knowing what public bodies (funded by tax payers) are up to.  In this case, journalist Brian Farmer wrote to the judge to ask that the media should be allowed to identify the police force, the Local Authority and the NHS Trust involved. In an earlier case in the Family Courts this year, Brian Farmer and Louise Tickle were successful in persuading the judge to change his mind, but in this case the judge authorised only the naming of the police force and not identification of the Trust or Local Authority.  The key arguments applied to the facts specific to each case concern the likelihood of identification of the protected parties, and the balance between their right to privacy (Article 8) and the right of the media (and public observers) to freedom of expression (Article 10).  We have reproduced Brian Farmer’s letter here (with his permission) because any of us may in future want to challenge reporting restrictions in the Court of Protection and his arguments are ones we can all learn from. 

Dear Judge,

Re KB/CoP Case No: 13673754

Thank you very much for letting me address you at last week’s hearing and for giving me the opportunity to apply to vary Transparency Order.

 (I’m assuming that, in making this application, PA Media will not be at risk of a costs order. I make that assumption on the basis of paragraph 16 of the President’s 2019 guidance on reporting family courts — https://www.judiciary.uk/wp-content/uploads/2019/10/Presidents-Guidance-reporting-restrictions-Final-Oct-2019-1.pdf — If we are risk of a costs order I would withdraw our application).

I would respectfully argue that the order is too wide. I think that the media should be allowed to identify the police force, local authority and NHS trust involved.

1: One preliminary, probably moot point: I don’t believe a Transparency Order is needed in this case. I think KB is automatically protected by the provisions of Sexual Offences (Amendment) Act 1992, which prevents victims of sexual assault, and people who say they have been a victim of a sexual assault, from being identified in media reports — https://www.legislation.gov.uk/ukpga/1992/34/contents.

2: I would argue that naming the police force, local authority and NHS trust involved will not create an information jigsaw which will lead to KB being publicly identified. There are jigsaws and jigsaws: if we were to report KB’s address, or name her sister, a child could piece together the jigsaw; if we were to name the day centre she attends, many people could piece together the jigsaw; but how could the man or woman on the Clapham Omnibus realistically identify KB by knowing the names of the Metropolitan Police, a large London local authority and a London NHS trust. I’m not aware that there’s any information already in the public domain which would provide a key piece. I would suggest that here you’re dealing an information jigsaw comparable to a 1,000-piece jigsaw of the Sahara sky at noon. In the real world, who would even think of trying to piece together KB’s identity, let alone be able to?

3: Journalists regularly have to abide by the provisions of two pieces of legislation which protect the identity of vulnerable people, when reporting crime and courts: the, above mentioned, Sexual Offences (Amendment) Act 1992, who protects victims of sexual assault, and Section 45 of Youth Justice and Criminal Evidence Act 1999, — https://www.legislation.gov.uk/ukpga/1999/23/section/45 —  which gives judges and magistrates the power to make order protecting child defendants, victims and witnesses. Neither piece of legislation suggests that naming a police force, local authority or NHS trust can be an identifying factor, let alone police forces, authorities and trusts in London. Section 45 of the Youth Justice and Criminal Evidence Act gives journalists a guide to pieces of information which might create an identity risk. The section specifies: name, address, school or educational establishment, place of work and image. You can be sure that the PA will not name KB, give her address, name the day centre she attends or print a photograph, nor will we name a street, or even an area of the borough.

4: It may be argued that neighbours might identify her, but the reality is that friends, relatives, carers and possibly neighbours, must know her identity. The man who raped her may well know her identity. I would argue that, when balancing KB’s Article 8 rights against the Article 10 rights of the public and media, it’s not reasonable to make an order which effectively bars journalists from telling a small group of people something they probably already know. In any event, KB’s unlikely to be at risk from any of those categories of people. She must now, surely, be subject to 24-hour supervision.

5. Likewise, it may be argued that other patients in the hospital where she gives birth may identity her. I would have thought the risk of that is very small, but if you think there is a risk, impose an embargo. Prevent reporting of the names of the police force, local authority and NHS trust until the baby has been born and KB is back at home.

6: Something has plainly gone wrong in this case. The public, particularly the taxpayers who fund the local authority with responsibility for KB’s welfare, have a right to know the name of the local authority. In the real world, people won’t try to work out KB’s identity, they’ll moan about the council: and they should be able to do that. If the local authority isn’t named, residents can’t tweet their concerns; people can’t tell newspapers that they’ve also had issues; the local MP can’t ask questions; even the councillors on the local authority may not know that the local authority involved is their local authority: they certainly can’t debate the issue at a public meeting. I would refer you to Mr Justice Hayden’s recent judgment https://www.judiciary.uk/wp-content/uploads/2020/05/2020-EWHC-1282-Fam.pdf  That case raised a similar issue where we successfully argued that a local authority should be named. In that case it transpired that the leader of the local authority did not know that the local authority was his local authority, until he read the Daily Beast. How can you be sure that lessons will be learned if debate is stifled? And, isn’t that the most important thing, that lessons are learned. Of course, the local authority will have something to say in their defence, and, of course, we’ll include that defence in any report. 

7: Likewise, the public have a right to ask questions of the police force they fund: they can’t do if the police force isn’t named. The public might wonder why the culprit hasn’t been arrested, and they have a right to ask. Will the police investigation be hampered if names are named? Have the police presented any evidence of that? Issues have been aired in open court, the police force has been named in open court. Was there an application for the case the be heard in private because of the sensitivity of the police investigation? The culprit either has the mental capacity to understand what he has done, or he doesn’t. If he does, he must surely know that the police will be investigating. The case has already been reported: how many men can there be in southern England who have raped a woman with significant learning difficulties in the last nine months? Hopefully very few. If the culprit lacks the mental capacity to understand what he’s done, is it likely that a report in the Daily Beast will put him on the alert?

8. People also have a right to ask questions about the NHS trust they fund because the Official Solicitor has raised a concern about the issue of sterilisation in open court. They may be lots of people in the trust’s area with concerns about the same issue.

9.   I don’t know the names of the local authority or the NHS trust. It may be that similar concerns have been raised about them before. It may be that lessons which should have been learned still haven’t been learned. I don’t know. If I can be given the names, simply for the purposes of the argument, I’ll happily do some research and see if I can add anything to our case.

10. I think in this case, when you balance KB’s Article 8 rights against the Article 10 rights of the media and public, the balance tips on the Article 10 side. I would respectfully argue that with should be allowed to name the local authority, police force and NHS trust.

If I can be of any more help, just ask.

Brian Farmer

Brian Farmer is a journalist with PA Media. He often reports on Court of Protection cases heard in the Royal Courts of Justice. 

Photo by Luis Cortés on Unsplash

Inviting family into the decision-making process

By Caroline Barry, 25th November 2020

Having watched the Open Justice Court of Protection Project with admiration from afar, I finally got my first opportunity to participate in the Project as a public observer.  

At around 9.30am on 19 November 2020, I saw that a hearing was coming up before Mr Justice Hayden (COP 13544390).  I sent an email at 9.38am requesting access, not really expecting a response at such short notice.  By 10am I had a response and by 10.28am I was observing the proceedings.  

Like many other people, I have participated in endless Teams calls over the past few months but my first observation was of how intimate it felt.  I was expecting a sort of “bird’s eye” view from the back of a courtroom – perhaps reflecting my instinct and desire to be loitering at the back, inconspicuous and with a clear line of exit if need be.

Instead, we were asked to keep our cameras as we were checked in to the court, and the frame filling headshots left no doubt as to our presence in the proceedings.   As I am sure many have felt, there was a fleeting moment where I felt exposed and intrusive, questioning my own motives as voyeur of a highly sensitive personal situation.  

It was not a feeling I ever had when reading countless judgments from the Court of Protection.  Those judgments, as indeed this hearing, have – I am sure – made me a better doctor and a better advocate for those living with serious illness and it is for that reason that I felt able to remain on the call.

The case concerned a person I will call Andrew (not his real name). He is not yet 40 years old.  He has a complicated medical history and a range of injuries caused by drinking a highly corrosive substance about five years ago – whether in a suicide bid or a ‘cry for help’ was uncertain.  He now has a tracheostomy and a feeding tube.   He also suffers from seizures and a severe seizure triggered a diffuse hypoxic brain injury which has affected his cognitive function.  He’s currently in hospital, but ready for discharge, so a placement needs to be identified.  

Previous placements have broken down. He was described as showing “challenging and highly disruptive” behaviour – including violence during periods of agitation and distress.  The latest expert evidence has come up with a new diagnosis: “emotionally unstable personality disorder of the impulsive type”.  


Andrew has recently been found by an expert assessor to lack capacity across a whole range of areas, including residence, care, medical treatment, and more.  The expert report was received just a few days earlier.  

No decisions were made at this hearing because Andrew was unrepresented.  Mr Justice Hayden recommended that this should be sorted out “expeditiously” (by asking the Official Solicitor to act on Andrew’s behalf) because “we cannot do anything without Andrew being able to give his instructions, capacitously or otherwise”.  There will be another hearing on 19 January 2021.

Although it was a complex case, I felt on fairly solid ground as the background facts were outlined.  Assistance with complex decision-making is a routine part of palliative care.  The ability to synthesise a lifetime of medical problems into a coherent whole, and to pull together the threads of the physical, psychological and social challenges a person faces into a holistic formulation are skills that develop naturally over years of practice.

I automatically found myself thinking about how I would be documenting the problem list and management plan if I was the attending consultant, and perhaps the questions that I would be asking of Andrew, or his clinicians, if I were involved in his care. 

This train of thought was interrupted by the participation of Andrew’s partner (I’ll call her “Lydia”), into the proceedings.   There was a noticeable shift in tone and body language of all the participants visible on the camera.  Mr Justice Hayden lent into the camera, his voice lowered and softened, head to one side. He asked Lydia: “What’s the weather like there?  It’s a very beautiful place when the sun shines!”.  

The previous formality melted away and I watched as, with just a few words, a very real connection was made between the highly technical medical information and the person at the centre of proceedings, his life and values. 

I think perhaps only 4 or 5 questions were asked over the course of around 10 minutes.   I was left with the impression that more was gained in this short exchange than could have been obtained from several hours of ‘expert’ testimony. 

Palliative care, as indeed the Court of Protection, is often characterised by decisions that can appear binary; CPR or “DNACPR”, feeding tube or not, come into hospital or stay at home, capacity or no capacity.  At times, the burden of decision making can be hard to manage both for professionals and for the person affected.   

Lydia reminded us that those decisions are medical constructs. When asked what Andrew wanted, her answer was clear: “he wants to be normal. He wants his life back”. 

These few words had a powerful impact on me.  I was reminded of the way in which we are content in medicine to discuss the complexities of a case within the safe confines of a sphere of professionals.  Whilst the views of patients and their relatives are always sought, they are rarely “invited in” to the mechanism of discursive decision making. 

Often, we throw up a cloud of dust, and persuade ourselves that relatives and patients may lack the required technical knowledge to fully participate in decision making, whilst failing to recognise that it is us who are deficient in our ability to ask the right questions. 

I could see so clearly in this case how a meeting confined to professionals alone could develop tunnel thinking about medical decision making, without contextualising those decisions within a wider narrative arc of a person’s life story and essential values. 

I watched as Mr Justice Hayden, with calmness, clarity and compassion deconstructed this fallacy, with the simple but sensitive prompt of “making the decision for him, not for you”.   I flatter myself that I have effective communication skills but admit to being unexpectedly moved by watching the judge in action.

From an observer’s standpoint, the interaction appeared therapeutic, in the sense that a relationship was established, common ground found, reassurance given and a plan taken forward for the future.  

Lydia supported the view that Andrew would benefit from the right kind of neurorehabilitation – even if he could not see the potential benefits, and even if that meant that she wouldn’t be able to see him as often.

When you read a published judgment, I can’t be the only person who reads a few paragraphs then jumps to the concluding comments.  I realised today that when you think about Court of Protection cases simply in terms of the outcome of the case, you overlook the journey taken to get there.  

Of course, I am sure for many individuals and families a court hearing can be a highly distressing and detrimental process.  Today, I formed the impression that for others, it might be an opportunity to restore dignity and choice to someone who has been unwittingly dehumanised by many years of medical treatment. 

David Sackett, pioneer of evidence-based medicine, notably said the most powerful therapeutic tool you’ll ever have is your personality”.  I hope that, in this case, the interaction I observed was indeed therapeutic for those involved.  If so, it will be thanks in no small part to Mr Justice Hayden’s sensitive manner and to the remarkable Lydia, who, within moments of speaking, established herself with quiet authority as one best placed to guide decision-making.  This latter point was also clear to Mr Justice Hayden, who recommended that she should be fully incorporated into discussions of Andrew’s care.

For my part, I left with a resolution to examine my own practice, and to consider deeply the motivations for the clinical decision-making forums (e.g. Multidisciplinary Team Meetings) I am part of that do not physically place the person or their family at their centre. 

Caroline Barry is a Consultant in Palliative Care with interests in mental capacity and human rights towards the end of life.  She tweets @drcarolinebarry

Photo by Anastasiya Romanova on Unsplash

Refusing kidney dialysis – a daughter’s reflections

Julie Morton, 23rd November 2020

When I asked for access to observe a hearing in the Court of Protection, I had no idea how close to home the key issue would turn out to be.  

The case I heard (COP 13673437) was in court for the first time and was listed for 2pm on 12 November 2020 before Mrs Justice Theis sitting as a Tier 3 judge of the Court of Protection in the Royal Courts of Justice, and held remotely via MS Teams. It actually started at 14.40 because the lawyers were reading documents that had been submitted late.

The person at the centre of the case, AL, has end stage kidney disease.  He needs haemodialysis three times a week to keep him alive. At the moment, he’s in hospital and accepting regular dialysis (at a “sub-optimal” level of twice a week), and is fit for discharge.

When he’s discharged from hospital and goes back home, he’ll probably refuse to come back in for dialysis.  This could mean that he dies.

My father died just over a year ago (in his mid 70s) because he, too, refused dialysis.  His situation was different because he didn’t have kidney disease and there weren’t any problems with his kidneys until he was admitted to hospital after a fall due to a small bleed on his brain and he died six days later.  Before the fall he was pretty healthy.  After the fall his kidneys just didn’t work and his body filled with fluid – he visibly looked like he’d been pumped up with fluid the last time I saw him. 

My father had full capacity throughout his stay in hospital.  A nurse discussed dialysis with him the night he died, and we were told after his death that my father had said he didn’t want any treatment or dialysis for his kidney disease as he didn’t want to be “strapped to a machine”.  This was his choice but, unfortunately, I and other family members weren’t part of that discussion and couldn’t give our views or reassurance regarding this. My father passed away that night on the ward on his own.

It was his right to make that decision but I wish I’d had a conversation with him about it.  I look back now at all the missed opportunities and kick myself for all the times I could have talked with him about his wishes about treatment and didn’t. 

There was a lovely time about six months before his fall, when he came round to spend time with me and my brother and brought a whole lot of photographs of us as children and letters we’d written to him 30 or 40 years ago.  That was a time for sharing feelings and memories and I wish I’d seized the opportunity to talk with him about the future then.  

And the day he went into hospital after the fall, I went to visit and it was just the two of us, and a conversation about his wishes is one of the things I wish I’d done, and didn’t.  I think I didn’t want to frighten him – and although I knew in my heart it wasn’t looking good, I never thought it would come to him passing away. The last thing he said to me was, when I said, “I’ll come and see you soon Dad”, he said, “Don’t forget!” – and I never saw him again.  And now I’m driving around with his ashes in the car and I don’t know what he would want doing with them – and I could have asked him but I didn’t take the opportunity to ask about that  either.   I just look back and think, “why didn’t we have those conversations?”.  Of course,  it’s easy to say that in hindsight.

I wonder what AL understands about his kidney problems and the way the treatment makes him feel? I’m not sure what actually happens but “wired up to a machine” doesn’t sound pleasant at all.

I hope AL’s family have some understanding of why AL is refusing treatment when he’s living in the community.  I was surprised to hear that his family would not be attending the hearing and that they asked to be informed of the judge’s decisions afterwards and that their interest in this had “tapered off”.  Maybe they find the court process daunting? Maybe there will be more information at the next hearing to establish what the family think is best for AL – and I hope we will hear from AI himself.

The applicant Hospital Foundation Trust (represented by Rhys Hadden) was applying for a declaration that it was in AL’s best interests to be discharged from hospital and to be treated reactively in the community and not under any compulsion or constraint.  It seems that this would mean an ambulance turning up at AL’s supported living accommodation three times a week to take him to his dialysis appointments but, as Rhys Hadden put it: “Nobody would restrain him, or coerce him into the ambulance. He’d be invited to attend for dialysis and it would, in effect, be up to him”.  The Trust was hoping for a final order at this hearing, and had an expert witness (a consultant nephrologist) in court, as well as two people involved in AL’s residential care.  AL was represented by Sarah Simcock via the Official Solicitor.  

AL lives in supported living accommodation where he is supported to manage his paranoid schizophrenia and recurrent depression. His capacity to consent to (and to refuse) haemodialysis has been assessed and he’s been deemed to lack capacity “due to fixed and delusional beliefs”.  This means that a best interests decision needs to be made about whether he should be compelled to receive dialysis against his wishes by means of physical, mechanical or chemical restraint.  There have been many occasions on which he’s failed to attend appointments and he’s become ill as a consequence and it’s led to a number of hospital admissions.  

The proposal to make a final order was resisted by AL’s counsel.  She asked for more time to get a better sense of AL’s wishes and feelings.  A previous (remote) interview with AL had not gone well, and it was hoped to have a face-to-face meeting with him to try to understand why he was refusing treatment when back in the community setting.   She said:

The Official Solicitor has no understanding why AL is passively accepting dialysis in hospital but refuses to attend hospital when he’s back in the community.   He’s compliant with his treatment (albeit at a suboptimal level of two times a week) – he doesn’t resist. But when in the community that compliance falls away.  In order to understand that, we consider that a face-to-face meeting should be arranged – given that the consequences of his continued refusal to accept dialysis once he is back in the community could be his death.”

She had also only just received the discharge and transition plan and hadn’t had an opportunity to discuss it with her instructing solicitor. And she wondered whether, if AL were to live in a place where nursing care was available (as it is not in his current placement),  he might be willing to accept dialysis – since he would not be required to travel to receive it.  She said:

We do note AL is medically fit for discharge and it’s not in his best interests to remain indefinitely on the hospital ward where he currently is, but we simply want to make sure that all available options have been explored fully, given the serious consequences likely to result if the Trust’s proposed plan is implemented.”

She also made the point that, since he is likely to become unwell and die if allowed to choose for himself whether or not to have dialysis, a care plan needs to be developed to cover that eventuality (i.e., his death in the residential care facility).

The judge decided not to make a final order at this hearing. I was relieved that the decision was delayed to obtain a better understanding of AL’s wishes and feelings.  Especially as nobody seems to have a clear idea about why he is compliant with the treatment when he’s an inpatient but then refuses to leave his supported living home and go into hospital for treatment when he’s back in the community.

In regards to finding a care facility that would be able to give the treatments on site, I have never heard of this in my social work career of 12 years either, although I haven’t had first-hand professional experience of people needing dialysis as there is a specific social work team within the hospital in Sheffield where I work for people with kidney problems. 

I fully understand the implications of AL being detained in hospital when he is fit for discharge but fully agree with the decision to delay this slightly until further information is gathered regarding his wishes and feelings. AL is only a young man in his 40’s and has had really debilitating health issues by the sound of it. It would be a real shame if he is left to die in the supported living home without fully exploring what other options could be available for him.

Since Dad’s death I’ve felt really anxious about death and dying and really worry about it.  I’m in my fifties and since what happened to Dad, I have decided to get my Lasting Powers of Attorney sorted.  I have all the documents for both Health and Welfare Power of Attorney and for Finance and Property Power of Attorney.  Both forms are filled in and ready to sign, with my son and daughter (in their twenties) as my decision-makers.  But for the last eight months they’ve been sitting in a box in my living room and I can’t bring myself to sign them and get the witness signature and everything.  It just makes me feel too anxious – as though I am going to die.  I can’t seem to handle it, even though it’s a process I initiated and I know I would have some peace from knowing that I’d sorted it out.

I do believe it’s important to talk with family and friends about what you would want if you ever couldn’t make your own decisions about medical treatments and other aspects of your health and social care – because you never know when something might happen.  And if you would like your family to have a decision-making role, appointing them as Power of Attorney is essential – because “next of kin” do not have any decision-making rights for adults who lack capacity.  You could also make an advance decision and advance statement. Check out the charity Compassion in Dying webpage which explains all the options for preparing for loss of capacity, and they also have an information line to provide support. 

I hope to attend the next hearing to find out what decision the court will make for AL.  It’s listed for one-hour at 2pm on Monday 23rd November 2020.

Julie Morton is has worked as a Social Worker for 12 years and as a best interests assessor for 4 years. She frequently works with people lacking capacity and living in either supported living or residential care. Her main case work is supporting adults with complex social care and health needs, with learning disabilities, autism and mental health issues. Julie has just started a Twitter account and would love some interesting people to follow her: @JulieMo09409624

Photo by Jari Hytönen on Unsplash

Accountability for the rape of a vulnerable woman

By Adam Tanner, 20th November 2020

Editorial note: The judgment from this hearing has since been published and is available here.

On November 12th 2020, I observed a hearing before Mr Justice Poole which concerned KB, a woman in her 30s, who was said to have suffered an hypoxic brain injury at birth which led to “significant learning difficulties”. This woman, KB, was living with family and receiving care, iincluding constant supervision, by way of a direct payment from the local authority (represented in the hearing by Victoria Butler Cole QC). Despite this, KB was the victim of rape, and subsequently became pregnant. The NHS Foundation Trust (represented by Nageena Khalique QC) had applied to the court to carry out a Caesarean section – and an order was granted to permit this. 

KB was said to have no ability to understand the reality of pregnancy.  Counsel for KB via the Official Solicitor (Bridget Dolan QC)  said that KB could not comprehend that a baby was growing inside of her. As a result of her learning difficulties, she was unable to verbalise beyond an occasional yes/no and it was deemed that she would not be able to undergo a vaginal birth. In his judgment, Mr Justice Poole said that the evidence shows that KB’s lack of understanding is “profound” and that she would “not at all understand the reasons for the medical interventions” involved in a vaginal delivery. It was said by counsel for the Trust on a number of occasions that KB would not be able to follow “professional instruction” during a vaginal birth. As such, the Trust believed that a vaginal delivery could be potentially traumatising for her. 

It was also stated during oral judgment that it would be lawful to use “reasonable and proportionate measures” including physical or medical restraints to enable the transfer of KB from her home to the hospital. However, all evidence was that KB would be cooperative and that she has never demonstrated any serious non-compliance. 

The NHS Foundation Trust had initially planned to seek an application for a non-therapeutic sterilisation procedure for KB, to avoid this kind of situation happening again. Sterilisation was quite rightly (in my view) called “draconian” by Ms Dolan QC. KB is a person with profound learning difficulties, who has never expressed any sexual desires or wishes. She was the victim of rape; she did not want to get into the position in which she now finds herself. Ms Dolan noted that sterilisation has only been authorised by the Court twice in the past 30 years on women who lacked capacity, and each of those times it was because the person was demonstrating the desire to engage in a sexual relationship. The Trust said that they would conduct a further roundtable meeting and move the decision about sterilisation to a later date. The judge noted that there is a “global and complex picture” which needs to be considered before any such decision can be made.  I hope they will decide not to allow any form of sterilisation of a woman who did not ask for, wish for, or desire any of this to happen to her. 

Throughout the hearing, there was criticism levelled not at any particular person but at the failure of the system in allowing such a lengthy delay before this case came before the Court. Further to this, concerns were raised when KB was 22 weeks pregnant about whether or not termination should be sought; however, repeated delays meant that, by the time KB saw a specialist consultant (when she was 24 weeks pregnant) that was no longer a viable option. Counsel for the Trust did, however, note that KB’s mother would have been against termination of pregnancy in any event. The judge remarked that KB might well have been so far along that the termination may have required the induction of labour, which would have been traumatic for KB.

Towards the end of the hearing, a representative of the Press Association, Mr Brian Farmer, raised an issue with the fact that all those who are present in court are prohibited (by the Transparency Order) from naming the local authority, the police force and the NHS Trust. Brian Farmer made the point that it was a matter of public interest which public bodies are involved, so that they can be held to account. 

Counsel for KB via the Official Solicitor said that, although it is normal to name public bodies in Court of Protection hearings, in a case of this nature – where KB had been a victim of a sexual offence – there is a risk that naming them might identify KB and she is entitled to her anonymity. Mr Farmer, therefore, stated his intention to launch an application to vary the terms of the Transparency Order, stating that Mr Justice Hayden has been very clear that the Court of Protection should not be a secretive court.

Mr Farmer also noted, and the judge said he would pass it on to the Vice-President, that the new ‘transparency order’ regime is less transparent than the old regime. He argued that the old regime of reporting restriction applications meant that the orders named the parties and provided a case summary. Now, he said, it is essentially a guessing game what COP hearings (in the Royal Courts of Justice) are about until the case is being heard.

I believe Mr Farmer is entirely correct in his wish to vary the terms of the Transparency Order. There were a number of other restrictions placed on reporting this case which limit an array of matters concerning KB from being discussed, most of which are not, in my view, of public interest. It is, however, of public interest to know which local authorities may be responsible for rather serious breaches of safeguarding. There is a risk that the scope of the Transparency Order – which prevents naming the public bodies involved – will mean that the Court continues to attract the stigmatising label of the ‘secretive court’ which has so often appeared in the press. The Court allows journalists and members of the public into hearings, but if we cannot then hold the responsible bodies to account, there is little point to us being there in the first place. 

This is an extremely serious case, with consequences that will go far beyond KB, as much investigation is yet to be done into how, in my opinion, the system managed to fail her in so many ways.

Adam Tanner is a PhD researcher in mental capacity law and has contributed previous blogs to this Project (e.g. here). He tweets @AdamrTanner

Editorial note:  An earlier version of this post was published at 8.00am on Monday 16 November 2020.  We removed it from our site at 8.22am the same day in response to a message from Victoria Butler Cole QC (counsel for the local authority) advising us that there were factual errors. The post has been corrected to address these – and the author also took the opportunity to fact-check and rephrase some sentences that may have been ambiguous or unclear in the first version. We were advised as follows:
1. The blog states that the woman whom the proceedings concern had a ‘supportive package with professional carers’ and that she was ‘under the constant care of her local authority’. KB was living with family and receiving care by way of a direct payment.
2. The blog says there was ‘serious criticism levelled not at any particular person but at the system which allowed a vulnerable woman to be raped while in the care of the local authority’. Again, there was no criticism made on this issue within the court hearing. The only opinion the judge expressed was that he felt the application by the Trust should have been made sooner.
” (Email from Victoria Butler Cole, 18.24pm on Monday 16th November 2020)
We are grateful for the opportunity to make these corrections.

Photo by Markus Winkler on Unsplash

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