By Claire Martin, 8th September 2021
On 14th July I observed my third and final hearing about how to make a best interests decision that balances effective monitoring of David’s night-time seizures with his right to privacy.
The case was heard by HHJ Howells (who has presided over David’s case since 5th March 2020, when the case first came to court) at Wrexham County and Family Court (COP 13575520 Re: B). I’ve previously blogged about the case here and here.
Background to the Case
David (not his real name) is 39 and has a severe learning disability, poorly controlled epilepsy and congenital cerebral palsy with right-sided hemiplegia. David’s consultant neurologist describes his epilepsy as ‘very poorly controlled’ with ‘daily unpredictable seizures’ of ‘multiple different types’. He lives in a care home and receives mixed 1:1 and shared care throughout the week. David enjoys life; he likes cars, going on trains and visiting caravan sites. His parent (her choice of descriptor), a party to the proceedings, lives abroad but has regular contact with him and has always been a part of decisions about his care.
The key issue for this hearing is how to effectively monitor David’s night-time seizures while also respecting his right to privacy.
In April 2019, a Visual Monitoring System (VMS) was installed for the purpose of night-time monitoring. Other, less restrictive, means of monitoring seizures were not explored. The VMS was also installed without following a statutory best interests process and David’s parent was not consulted on its installation.
At the end of the last two-day hearing, on 7th May 2021, Emma Sutton, counsel for David, summarised the parties’ positions and plans before this final hearing.
Final Hearing – ‘There Remains a Dispute Between Parties’
HHJ Howells summarised each parties’ position:
- David’s parent maintained the view that the VMS should be removed immediately and that an ‘appropriate balance’ (of safety and privacy) would be that he can be observed visually every 30-40 minutes throughout the night.
- The position of Counsel for David was that the VMS can, and should, be removed, and that ‘not less than 30-minute’ observations throughout the night should be instated instead.
- Counsel for the Local Authority (Robert Goodwin) remained neutral regarding the VMS and recommended the safeguarding needs of David are a matter for the court.
- The position of the Health Board (counsel Anna Tcazynska) was that the VMS is a necessary intrusion and in David’s best interests to ensure his safety and wellbeing, and, on a balancing exercise, is an appropriate interference with his right to privacy.
A lot of work had clearly been done between the May 2021 and July 2021 hearings. The lead nurse for the Health Board had compiled a costed, comprehensive and realistic options appraisal for the court to consider. HHJ Howells checked that the parties were satisfied that this evidence was factually correct, and that the lead nurse did not (as a consequence) need to be cross-examined. Each party then had the opportunity to provide their closing submissions to the court.
I wrote thirty-four A4 pages of notes during this hearing. The attention to detail at this hearing was, I thought, an exemplar of meticulous consideration in relation to David’s care, from all parties:
- what was the risk of SUDEP (Sudden Unexplained Death in Epilepsy) for David?
- would an increase in the number of physical checks, in the absence of a VMS, disrupt his sleep?
- what other technological monitoring devices might be considered?
- is there evidence that the VMS decreases the likelihood of SUDEP?
- what is the right balance of safety and privacy for David, given the accepted risks?
It is tempting to write a very detailed blog, moment-by-moment, to illustrate the care taken with this case. I have now observed over twenty cases in the Court of Protection in the past year – the level of consideration in this case was no different really, though the presence of David’s parent as a party (and, though not an expert witness, as a trained medic herself) added depth and insight to proceedings, that might otherwise have been absent.
Suffice to say, there was scrupulous exploration of the statistical and individual risk for David of SUDEP (including the commissioning, by David’s litigation friend of a further independent report (accepted by all parties) from SUDEP Action). Recognition was made of the failure to follow a statutory best interests process, and as part of that recognition a full appraisal of options for monitoring seizures was carried out and provided as evidence for this final hearing.
Instead of a detailed consideration of all aspects of this hearing, I’m going to focus on two key aspects of the case that I think are pertinent for practitioners in the field (1) Balancing Safety and Privacy, and (2) Risk Averse Practice, and then I’ll summarise in detail HHJ Howell’s judgment.
Balancing Safety and Privacy
This judge frequently referred to the idea that medicine prioritises ‘safety’ and ‘keeping people alive’. The implication (and stated suggestion) was that this can sometimes be to the exclusion of other factors.
David is enjoying life and has thus far been provided with care and treatment to maximise the chance of his remaining alive. As with any care and treatment, though, their costs and benefits need to be subject to a best interests balancing exercise. In this case, a proper best interests evaluation involves balancing the protection of David’s health and life, with the protection of his other rights. This should have been carried out by the Health Board before introducing the VMS.
The importance and efficacy of the VMS requires careful consideration – since the more likely it is to protect David against sudden death, the more heavily it will weigh against other considerations.
So, what is the clinical risk of death from Sudden Unexplained Death from Epilepsy [SUDEP] for David, and how efficacious is VMS likely to be in preventing that?
Counsel for David summarised evidence that:
- “on a general basis, 0.182% of the UK epilepsy population (meaning that 99.8% of the UK epilepsy population will not) suffer SUDEP.”
- “on a specific basis, there is a 99.5%+ chance that [David] will not suffer SUDEP in any year (evidence of treating clinician and Dr McCorry, expert witness).”
- and that “… the visual monitoring system is unable to prevent SUDEP as it is not constantly monitored by a member of staff (David currently sharing night time staff on a 2:8 basis) and the Health Board accept that ‘for complete accuracy it will rely on a staff member looking at the monitor continuously’) … and even if it was constantly monitored, the statistics from SUDEP Action highlight that only 50% of deaths (from SUDEP) are potentially avoidable.”
I was left wondering about the consternation and conflicts that providing good care would provoke in those looking after him. The risk of SUDEP for David understandably causes alarm, for all involved in his life. The evidence presented led one to question whether the VMS, as a response to such alarm, was, in reality effective in reducing his risk of SUDEP. Perhaps the balance, on the ground, involved professionals feeling that they had done everything that they conceivably could have, should David have died, instead of objectively increased safety. A different balance: instead of safety vs privacy, feared blame (of professionals) vs privacy?
HHJ Howells: Health professionals are risk-averse – I don’t criticise, their obligation is to keep people alive. My obligation is to look at P in the round’
We learned that David had lived in the same care home for the previous 16 years without a VMS to monitor his seizures. It remained unresolved, even at the conclusion to the case, why his treating clinician had installed a VMS when he did. He suggested that it was due to a letter from David’s GP outlining concerns about increased tonic-clonic seizures (the type of seizure that is linked to increased risk of SUDEP). However, this reasoning was disputed by David’s parent and David’s counsel – and in any event, since the VMS had been installed in April 2019, David had only had one of these types of seizure at night, and it was not clear whether the VMS (or another means) had identified that one seizure.
David’s parent’s view was clear on the balancing of his safety and privacy:
“I’ve known and loved [David] for 40 years. He’s a remarkable human being. He’s become medicalised – he’s become a medical ‘problem’. … The system looks for the easiest way – especially when costs are a factor. Up until now, the Health Board – even in their recent statement – hasn’t addressed my concerns about SUDEP, at all. I’ve had hours of meetings – in none has there been a discussion of my interpretation of the risk. I find that interesting.” [Parent’s emphasis]
She went on to say that in all the years under his treating clinician’s care, there has ‘never been a mention of a camera’ and that ‘over his life, the seizures were far, far worse than currently – at one point 100 a day’. Her exasperation at the reason for the sudden intrusion into her son’s life – given her analysis of the clinical risk – was evident:
“[David] has always had unobserved fits. During the day no camera is used – he is in his room for significant periods of time, playing with his stuff, no staff to observe. I’ve been there when some of the more able clients have alerted staff to his fits. It’s a gross medicalisation of [David] – a frantic desire to protect him at all costs.
SUDEP is a risk for all people with epilepsy, including others in the home, they are not monitored in this way. The camera has led to people being locked into their views. To backtrack is to compromise what they’ve said. I feel in this case [treating clinician] has allowed himself to be trapped into his view – his professional reputation is on the line. …. [There is] no evidence that the camera has done anythinghere – except court procedures – no evidence it has stopped dangerous seizures or an event leading to a greater risk.
Intuitively one feels it helps – but there’s no evidence base it reduces risk of SUDEP. I honestly don’t know why [treating clinician] came to that decision – it’s not the GP letter, over the years there’s been many GP letters. It’s not a satisfactory answer. My suggestion – I think he went to a conference and heard a presentation and thought ‘That might be something we could use in this case’. I am very critical of him that he didn’t discuss it with me – he has done in the past. I think there’s a backstory that we will never know. I’m a doctor – I know how hard it is for people to stand back and say ‘no evidence’. I’d ask the court to make a brave decision”. [Parent’s emphases]
Emma Sutton on behalf of David extended the analysis of the balancing of safety and privacy for David, in particular referring to the Health Board’s submission regarding engagement of Article 8 of the European Convention of Human Rights (respect for your private and family life). At the start of the hearing, counsel for the Health Board had described her client’s position on this point:
Anna Tcazynska: ….. a 39 year-old man not wanting to be observed. The Health Board acknowledge this. But this is a person who doesn’t have the ordinary experience with privacy. [He’s attended] 1:1 day-to-day – he has drop seizures – so the VMS continues this. He can’t express his views because of his learning disabilities – and because of his significant learning disabilities, would he experience the same level of intrusion?
Judge: You’re saying he’s not disturbed or upset by what, in other circumstances, would be an intrusion…..
Anna Tcazynska: He’s not distressed by the presence of the camera in his room. He’s been shown it and he’s been talked to about it. He doesn’t know what it’s used for. He is given private time during the day. The VMS Is only when he’s asleep.
Emma Sutton, in her submissions as counsel for David, picked apart the Health Board’s reasoning and practice in relation David’s right to privacy:
“What would be reasonable for a 39 year-old man every night in his bedroom? … The litigation friend, on behalf of [David], has struggled with this – it’s not a situation where [David’s] wishes and feelings can be ascertained as he is non-verbal – it’s the obvious issue of an individual’s privacy, every night. Masturbation is raised as a ‘privacy issue’ – the Health Board raises privacy but the lead nurse’s last statement is troubling, she says: ‘[David] doesn’t seem to be embarrassed at all if walked in on whilst masturbating’. He can’t express a problem because of his conditions – his inability to provide such an expression does not mean that he is not still entitled to the same protection of his human rights.”
She went on to reference Mr Justice Jackson’s judgment – in Wye Valley NHS Trust v Mr B [2015] EWCOP 60 ( there’s a helpful summary here, by Alex Ruck-Keene), quoting a key line in that judgment:
“11. This is not an academic issue, but a necessary protection for the rights of people with disabilities. As the Act and the European Convention make clear, a conclusion that a person lacks decision-making capacity is not an ‘off-switch’ for his rights and freedoms. To state the obvious, the wishes and feelings, beliefs and values of people with a mental disability are as important to them as they are to anyone else, and may even be more important. It would therefore be wrong in principle to apply any automatic discount to their point of view.”
Emma Sutton: [It is] a fundamentally flawed Health Board view that because he does not (as he cannot) voice an objection, that his privacy is not to be treated with the same degree of importance.
This argument seemed, to me, pivotal, when considering the balance for David of his safety (bearing in mind all evidence for clinical risk and the evidence for effectiveness of the VMS of mitigating that risk) and his right to privacy.
‘Risk-Averse’ Practice
HHJ Howells, referring to the expert witness and evidence from the treating clinician, said:
“His [expert witness] position is to avert death at all costs. That is understandable from a medical practitioner – to prevent death and not to harm. …. I recognise why health professionals are risk-averse – I don’t criticise – their obligation is to keep people alive. My obligation is to look at P in the round. … My analysis – and I don’t criticise medics for their approach – they talk about ‘gold standard’ being constant observation. This has an impact on the rights and privacy of P”
I work in health care. The possibility of being blamed for (or worse – engaging in) poor practice – especially when this might involve the death of a person in your care – stalks us all. This is why multi-disciplinary/agency teams and collective thinking are key. When the presumption that P has a subject-matter capacity is rebutted, this must lead to a best interests decision on that matter involving consultation (s. 4(7), Mental Capacity Act 2005).
This is not to render responsibility diffuse, but to consider the range of views and come to a balanced, proportionate decision – ‘in the round’ as HHJ Howells suggested. A ‘decision maker’ (as David’s treating clinician was described in this case) or a ‘responsible clinician’ (most often, though not always, a medical practitioner) might feel especially vulnerable, and therefore prone to making risk-aversive decisions. Support and training from employing Trusts/bodies needs to be forthcoming to enable a fluid and responsive system of care where practitioners feel, and are able to make ‘brave decisions’ (in David’s parent’s words).
It feels as if we are moving further and further away from this kind of deliberative, considered, ‘in the round’ care for each other. I did a quick search for ‘risk-averse practice NHS UK’ and found some interesting papers. This, from 2019, looked at A&E decision-making, comparing junior and senior clinicians. There was some evidence for experience leading to increased ‘tolerance of uncertainty’ and less risk-averse practice. ‘Learning to Live with Risk’, from 2011, in relation to social care, is a helpful document about risk aversion.
An intimidating document – Risk Management Policy and Procedure CG04 (2020) – from NHS Resolution (a part of the NHS that I had never heard of before!) states:
So, I have a lot of sympathy and understanding for a drive to focus on safety – or (what might morph into) apparent safety and risk management. The details of this case seem to suggest something other than risk-averse actions, however.
The VMS was installed, apparently within the day, in April 2019. We heard that a Best Interests process was not followed for the installation of that VMS, and the lead nurse explained that she and others did not feel able to question or explore the decision, and viewed the decision solely as belonging to David’s treating clinician. At this final hearing, however, it was reported that the lead nurse had submitted, in her written evidence to the court: ‘In future I will ensure that before any decision is made that there is full consultation’.
There was a suggestion of increased concern from David’s GP – though this evidence did not transpire to be persuasive as the lever for the VMS, given his seizure history.
Emma Sutton submitted:
“It has been suggested that [treating clinician] responded to a question from [David’s] GP. We are now two years down the line – there is no evidence that the VMS has been of benefit. …. We have two years of the monitor being used with questionable efficacy versus sixteen years with no VMS used within the same care home. The VMS is not fit for purpose. The Health Board suggests the VMS needs to be monitored continuously – this hasn’t happened over two years – [David] is safe and well. [Treating clinician] acknowledged it wasn’t being used as he thought it was. ”
Judgment
HHJ Howells asked all parties whether they would prefer a ‘brief ex tempore judgment’ at the hearing, or a full, written judgment that would likely take ‘a matter of weeks’. There was disagreement: Counsel for David and David’s parent preferred ex tempore, counsel for the Health Board and Local Authority a written judgment. I understand that some judges do give ex tempore judgments that are then published later, and I thought it was a shame that this case will not have this public record, given the learning available for health and social care practice.
HHJ Howells said, “I understand the decision’s importance to all parties. This matter should have been determined in May [2021]. I am going to give a decision today. I consider ex tempore to be necessary”.
The court rose and reconvened a short while later. The judge spent a long time (around 40 minutes) giving her judgment and explaining her reasoning. It felt fitting in its detail given the complexity, and longevity, of the court case.
Given that there will not be a published judgment on this case, I will summarise HHJ Howells’ judgment in some detail. It is not an account of the full judgement. I wrote as fast as I could and I report the judgment as close to her words as possible (but given that we are not allowed to record hearings, it is unlikely to be word perfect).
The judgment addressed, explicitly, not whether David needing monitoring, but the ‘type and level of monitoring that is necessary and proportionate’. The judge noted that it is not possible to know David’s wishes and feelings about the monitoring of his epilepsy – save that his litigation friend submits that he would ‘wish to be cared for by skilled carers [who] promote his autonomy and independence and privacy’.
HHJ Howells said:
“The position of the litigation friend is that there is no need for a camera. [David] has lived without one for 16 years. That it is too great an interference with his privacy and personal life. That it should be removed – and the fall-back position is that the visual element should be removed.”
“The position of the Local Authority is neutral. They fund support and submit no particular views on monitoring.”
“The Health Board has strong views that the VMS must remain. They rely on medical evidence for this position and submit that the risk is so significant that to remove the VMS is not justified.”
“[David’s parent’s] position is that the VMS is a gross invasion of his privacy. That there is no efficacy of the monitoring system. She does not object to audio monitoring and 30 minute checks.”
“There is significant evidence in this case – both oral and on paper. Expert evidence for Health Board goes only one way. I have considered all the evidence.” [Judge’s emphasis]
HHJ Howells then described the legal framework, referring to the position statement from Emma Sutton, and noting that all parties accepted the accuracy of this document:
- Section 4 (6) of the Mental Capacity Act 2005 regarding making decisions for an incapacitated person:
- Baroness Hale in Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67 (30 October 2013):
HHJ Howells stated that she must consider “the best interests of this P, at this time – his welfare in the widersense, not just medical, but social and psychological”.
[Judge’s emphasis]
In relation to applying the s4 MCA 2005 checklist – regarding the best interests of an incapacitated adult. Is there a violation of his Article 8 rights? Is it necessary and proportionate?
HHJ Howells said:
“[David] wants to be alive – against that background I look at the evidence. That [David] lacks capacity is not in dispute. These proceedings have looked at residence, care and treatment, video monitoring and wearing a helmet.
I have considered all witness evidence in this case. Oral and written. I read it all last night.”
Expert Evidence
“I need to address the expert evidence. The Health Board relies on this. Dr McCorry confirms all diagnoses and the unpredictability of seizures. He confirms the need for care. … [David] is ‘at significant risk’ of SUDEP – one to two in a hundred. There is a degree of uncertainty – can it be prevented by provision of care? People are often found dead in bed, unwitnessed. His view, it is in [David’s] best interests to have the seizures attended. On balance that this reduces the risk of dying.
There is no question of [David] being attended – the issue is how?
Dr McCorry confirmed that only a few patients have VMS – that there is no one method or system that provides good care. There is other technology. … The most effective is visual – not necessarily VMS. Regarding VMS being intrusive – it is only used short-term in hospital, often with consent. Some are in care homes, and need to be observed at all times. Non-visual systems (e.g. seizure detection) are less effective. On cross-examination Dr McCorry confirmed that all seizures carry risk of injury and SUDEP. There is no safe seizure type. I found Dr McCorry a straightforward witness, a professional gentleman. He did not want people to think that [David] was not at risk – it is better for him to be observed. How that can be done is in a number of ways. He accepted that assistive technology may help. His position is to avert death at all costs. This is understandable from a medical practitioner, to prevent death and not to harm.
He said – ‘a video monitor in itself does not provide good care. People do.’ It is appropriate to look at less intrusive means. They remain untested. In caring for a person what is needed is a person and care”. Dr McCorry’s evidence was of considerable assistance to me.
Treating Clinician Evidence
“[XX] has been [David’s] treating clinician since 2003. He is a specialist in epilepsy and learning disabilities. Prior to 2019 there was good communication between [treating clinician] and [David’s parent].
Firstly he discussed the risk of SUDEP. [He thought there was] a clear need to put in a plan for medical care of cluster seizures. The aim was to reduce the number of seizures. Not all seizures can be picked up – a need for a video monitor at night-time was identified.
It seems that within the day in April 2019 a VMS was purchased and since then [David] has been monitored every night in his room with a hand held device. [Treating clinician] indicated that he’d expected a process – nevertheless that didn’t happen. At no stage was an application made to ensure this was brought before the court, or a best interests meeting arranged expeditiously, to include [David’s parent] – she would never have agreed to it. … Excluding her from this process caused significant upset to a caring and committed parent.
In his second statement [treating clinician] said that initially no data was kept by the care home to enable analysis. This has improved recently. [Treating clinician] says it has identified night-time seizures – though none has been tonic-clonic. He suggests the VMS is still needed because they do pick up seizures. His view remains unchanged.
In his oral evidence he was challenged by [David’s parent] and Counsel for [David]. He stood by his evidence – he said ‘how it is delivered [the VMS]’ is not his area of expertise. He placed the risk at 1/300 for SUDEP. He said of course he was biased and that a small percentage risk of death is not meaningless in the round.”
Lead Nurse Evidence
“[Lead nurse] does not have Court of Protection experience. She cannot be criticised for that. At the previous hearing she was professionally criticised for how she had managed matters – not including the RPR and not following this up; the options considered were not complete and there were limitations in what she had prepared. That is why the hearing came to an end. Since then, and to [lead nurse’s] credit, she has put considerable effort into looking at all available options. The initial position was from inexperience. A nurse relies heavily on evidence from [treating clinician]. She has now done an options appraisal.”
Other Evidence
“The SUDEP Action report. The litigation friend obtained this report to assist the court – all parties agree the content. The team included 13 professionals in epilepsy mortality and risk, including safety tools. A world leader in their field. The report deals with mortality risk – 21 people die weekly in the UK [from SUDEP}. 50% are unavoidable. People with learning disabilities and epilepsy have a worse outcome than the general population. People aged 20-40 have elevated risk. The main risk factor is tonic-clonic seizures. The report deals with devices for monitoring and identifying seizures – their effectiveness, limits etc. It is based on data available. There are hundreds of different monitors available on the market. Most do not use a TV monitor.”
David’s Parent’s Evidence
“Finally, [David’s parent]. Her own experience of [David], but also a medical professional herself. Her points are clearly made. Numbers of people with SUDEP are low. The efficacy of the evidence was questioned. She believes the utility and evidence for the VMS is unproven. That it was a grave error not to include the family in the decision and a failure to convene a best interests meeting. She submitted that in a Skype call with her, [treating clinician] indicated that he would not have installed the VMS if he’d known she’d been opposed. In cross-questioning he did not say this. I note the evidence about the Skype call. It is clear there was some discussion previously – [David’s parent] reached the conclusion that he would not have installed the VMS if he’d known her position.
Evidence from the RPR
“ The RPR is at a loss as to why the VMS had to be installed with such urgency. His parent has been involved in all of [David’s] care. She had no knowledge of the VMS and was not invited to the meeting in 2019. This is a breach of [David’s] rights. [David] has been in the home since 2003 with no camera. The RPR has difficulty obtaining [David’s] wishes and feelings. She believes we have a viable option for the removal of the VMS – possibly to use audio, which she considers is still intrusive, but less restrictive.”
“That is all of the evidence. I will now address the pros and cons of the VMS and other options.”
The Pros and Cons of the VMS
“It is right to say there is a risk of SUDEP. On the evidence there is a small percentage risk. Less than 1%. [David] will live with this for the rest of his life. I recognise what the experts say – they wish to be risk-averse. I recognise the strong presumption that [David] would wish to stay alive.
In analysing the risk of SUDEP – we cannot take risk at face value. The rationale for the VMS was tonic-clonic seizures. What has happened since is that [David] has had one of these at night-time in two years. The VMS has shown other seizures through the night. Many are picked up auditorily, some are picked up by people in the room.
SUDEP is a diagnosis of exclusion. The statistics from SUDEP Action say that only 50% are picked up in any event, on any monitor.
The OTs say that checking can be disturbing to sleep. I don’t accept this evidence. There is no evidence that checks are having this effect on [David].
Dr McCorry, [David’s] sister and other treating clinicians think it’s in his best interests to keep the VMS. However, they are approaching matters from a risk averse position, not a holistic position in relation to [David].
I’m not satisfied [treating clinician] has analysed the data as closely as he might have done, for example whether [David’s] seizures could be picked up by sound as opposed to visual. In my analysis, I don’t criticise the medics for their approach – they talk about ‘gold standard’ being constant observation – this has an impact on the rights and privacy of [David].
Factors against the continued use of the VMS. The Health Board suggests [David] copes OK and has not shown disquiet. I don’t find this a persuasive argument. [David] is a young man with significant difficulties. The fact that he doesn’t show embarrassment at his personal time being interrupted doesn’t mean that he should have it interrupted.
If safe, anyone should have privacy in their room at night. The RPR cannot obtain his views – private acts would not be something anyone would normally want to be observed. The fact he cannot express his opinion because of his disabilities does not mean this fundamental right should be interfered with. [David] is entitled to privacy if this can be done safely. SUDEP is a significant risk – but a small proportionate risk.
[David] has lived with epilepsy since a babe in arms. For sixteen years in the home there has been no VMS. There were 30-minute checks. What changed I’m still not entirely clear. Some concern about tonic-clonic seizures and the mechanism of these. This has not come to fruition. I am not satisfied that, since the VMS has been in place, it has made any significant or material difference to the care of [David’s] epilepsy. Monitoring has made no difference to the seizures over those two years.
Dr McCorry said that the VMS is ‘very unusual indeed’. Particularly when I take into account [David’s parent’s] evidence – her views are careful, well thought through, from a position of love and clear thinking.”
Final Judgment
“The conclusion I reach is that it is not in [David’s] best interests to have a VMS in place. It is not proportionate, or efficacious. It is not a proportionate response to a fundamental right he has. In balancing the evidence, I need to consider how best to protect [David].
Checks every 30 minutes, staff going into his room, and an audio monitor in place. A lot of his seizures have a sound element. We are not relying on sound only – there will be 30 minute checks as well and due to the layout of the home there will be others around in close proximity. Audio is an infringement – but in my judgment it is proportionate. This is not challenged by the litigation friend.
My judgment is that – if funded – a mattress alarm can be explored. The same is said in relation to an enuresis mattress cover. Pillows – no [referring to anti-suffocation pillows]. The relevant parties will look at the use of a wrist monitor.
[David] has had excellent care – everyone is delighted in his care at the home. Something went very awry in 2019. The upset it has caused has been the result.”
At the end of the delivery of the judgment Emma Sutton returned to the issue of costs. HHJ Howells stated that, due to the process of the installation of the VMS ‘costs should flow’. This was dealt with as a separate issue (following written submissions) and a costs judgment will be published in due course.
Reflections
When someone is at risk of sudden death, it seems common-sense to do everything possible to mitigate that risk. Why would the court not authorise all potential measures of risk reduction? As David’s parent said, it seems ‘intuitive’ to do more to monitor people’s safety. However, if we interrogate that position, it becomes clear that all potential measures of risk reduction are not authorised when those measures might be burdensome to P (in excess of the potential benefits) or infringe fundamental human rights. Furthermore, capacitous people regularly make decisions against intervention (e.g. chemotherapy, amputations) even if it means that they might be at increased ‘risk’.
The evidence here though was such that the effectiveness of the VMS in identifying (and thus preventing harm from) seizures, was not proven. What struck me most bluntly was that the VMS was hastily installed and there was no process to evaluate its effectiveness – the treating clinician said ‘how [the VMS] is delivered is not my area of expertise’. I found this a startling statement – the person charged as the ‘decision maker’ has no subsequent input into how and whether a monitoring system is working, despite remaining David’s treating clinician. How can anyone know if it is helping to identify more seizures and be worth the intrusion? What happened was that the VMS was simply installed – and that was that. Everyone involved in David’s care must have simply gone along with this, I assume because they just accepted the idea that the presence of a VMS increased David’s safety.
Creeping surveillance does give the impression of increased safety – perhaps not just in care settings. We have all come to expect CCTV monitoring in our daily lives, in public spheres. This is very different from a CCTV in one’s bedroom at night.
HHJ Howells mentioned a few times that the medical approach was understandable – and that it was her (and by extension the Court’s) job to look at P ‘in the round: medically, socially, psychologically’. A question kept nagging at my mind throughout this hearing: How, then, can those Ps, whose care is not brought before a judge, be seen ‘in the round’? This issue has vexed me throughout this case. If the message is that only the Court of Protection needs to do this, where does that leave all the other Ps deemed to lack capacity to make decisions about care, medical treatment and so on?
I might have interpreted HHJ Howells’ statements incorrectly – in that I understood her to be suggesting that she understands and does not question the medics’ approach as singular in nature: to be risk-averse and preserve life at all costs. Rather, it could have been that HHJ Howells was being conciliatory and at pains not to blame – whilst at the same time in her judgment apportioning fair blame: for not holding a best interests meeting and not informing or consulting David’s parent throughout.
If a best interests’ process had been followed and it had been decided that monitoring was not in David’s best interests, then no court hearing would have been needed and P would not have had his Article 8 right violated for a long time. If there had been disagreement (e.g. between parent and clinician) after a best interests process, then an application to the Court of Protection might have led to a case process similar to this, but without delay. The issue in this case is that there was no best interests’ process at all!
All decisions made on behalf of a P who is not able to make those decisions for themselves must be made in P’s best interests – which means a proper best interests process should be followed, balancing all the issues involved, including P’s human rights.
The cost is an additionally important element of that failure (others are unnecessarily taking up court time when it is already overburdened with cases, taking busy clinicians out of work to give evidence, not to mention the stress and angst of a court process for those involved).
A previous hearing I attended (and blogged about here) heard Mrs Justice Lieven lamenting:
“I would so much rather the money the Local Authorities spend on barristers and solicitors in cases like this, got spent on the care of elderly people! Think how many care workers could be paid with what a half-day hearing in the High Court costs!”
I don’t have a calculator for court costs – David’s case, over several hearings, must have cost a significant amount of public money. As a simple result of one dominant voice and not following the legal best interests process due to the presumption that a risk-averse ‘medical’ decision trumped David’s other interests and rights. It caused a lot of distress to David’s parent, who at this hearing stated that she ‘was not used to gladiatorial locking of horns’. Fortunately, David was not distressed, or aware, of the disputes. It all seemed so unnecessary.
Claire Martin is Consultant Clinical Psychologist, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Older People’s Clinical Psychology Department, Gateshead. She is a member of the core group of the Open Justice Court of Protection Project and has published dozens of blog posts for the Project about hearings she’s observed (e.g. here and here). She tweets @DocCMartin
Promoting Open Justice in the Court of Protection 
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