Alex RKEIn University College London Hospitals NHS Foundation Trust v HER & Anor [2024] EWCOP 25, Senior Judge Hilder had to consider what (if any) weight to place on the opinion of P’s sister as to her condition and treatment. P, identified in the judgment as HER, was 53 years old, and living in a supported living placement. In her early childhood HER had a stroke-like episode, which had a lasting effect on a large part of her brain. She was described as also having learning difficulties and epilepsy. She had also been diagnosed as having a metabolic disorder, OTC, giving rise to intermittent episodes of acute encephalopathy. HER was experiencing epileptic seizures a few times a month, without warning, and giving rise to risk of sudden unexpected death.
UCLH had a proposed treatment plan, to which HER’s sister, identified as SR objected. A preliminary, but important, point was as to whether SR’s evidence about her sister’s condition and treatment was admissible. The Trust argued that it was simply inadmissible because it was opinion, and she was not qualified to give such evidence. The Official Solicitor, on HER’s behalf, argued that it was admissible, but that the court should effectively accord it no weight.
P’s sister, identified in the judgment as “SR,”
described herself as ‘an expert by experience’ […] and as “an expert as regards HER” […]. She does not contend that she is “a medical expert”. Rather she says that she has unrivalled knowledge of HER, and HER’s experience of life and medical treatment (paragraph 13(d)).
Senior Judge Hilder identified the expertise of the treating clinicians (no independent medical evidence had been directed. By contrast, she noted that:
18. […] SR is a devoted sister, who has obviously spent a great deal of time and effort trying to educate herself about HER’s condition. She has closely observed HER for pretty much all of her life, and therefore has much to say by way of describing HER’s reactions to treatment. However, she comes to the issues before the Court as a technical lay-person. Her insight into the relevant medical science is limited to that which can be picked up from publicly available documents – in her evidence she has referred to consulting “Dr. Google” [239]. It is untested by examination or qualification or professional discourse, unconstrained by ethical regulation, and uninformed by practice. She is naturally not an objective observer but has an emotional investment in HER.
As Senior Judge Hilder noted, there was in reality little difference as to the practical evidential effect of the approaches taken by the Trust and by the Official Solicitor. However, she continued:
20. There does however seem to me to be a significant difference in how SR is likely to experience the fairness of litigation. If her evidence is excluded, it is as if she had never articulated her position to the Court. If it is admitted but no weight is put upon such matters as she lacks expertise to opine upon, at least she has been heard.
21. I therefore take the following very practical approach to the issue of admissibility of SR’s evidence:
(a) in reality, both of SR’s statements were admitted as evidence in these proceedings, and read by me, before any argument to the contrary was raised by the Trust; and I have heard oral evidence from SR, without any contrary application by the Trust.
(b) Therefore, I can only now consider the Trust’s argument of inadmissibility as an application that, having already been admitted, SR’s evidence should be disregarded in so far as it ventures into matters of medical expertise.
(c) Without wishing to lose any of the respect intended in the term “expert by experience”, I am clear that this is not the “expertise” for which the Court looks in questions of medical diagnosis and treatment. I do not regard SR as appropriately positioned to give expert evidence about medical matters. In so far as SR’s evidence crosses the line into matters which are properly the domain of medical expertise, it can therefore be of no weight.
(d) Looking at it in the round, I regard SR’s evidence as the attempt of an intelligent non-expert to understand what is being done for and to her much loved sister. In so far as SR’s evidence expresses her observations of HER’s experience of or reaction to medical treatment to date, I shall consider it as evidence of fact.
As to the substance of the decision before her, Senior Judge Hilder identified that:
36. The treatment which SR proposes is not being offered by the Trust. It is therefore not an option which HER could choose for herself if she had capacity to do so, and so not an option before the Court. This Court cannot compel clinicians to give a course of treatment against their own professional judgment. So, to be clear, the decision which I have to make in these proceedings is not whether I prefer the Trust’s treatment plan or SR’s. It is more narrow than that – namely, whether I am satisfied that the Trust’s treatment plan is in HER’s best interests, taking into consideration SR’s views about it.
37, I accept the medical expertise of both Professor Walker and Dr. Murphy. They both struck me as diligent, careful witnesses. I note that, notwithstanding that they come to HER’s treatment from differing specialisms, conscious that the approaches of one impact on the concerns of the other, they are in full agreement with each other as to how to treat HER’s complex condition.
38. I also note that Professor Walker’s description, at [192], that he “specialises in complex epilepsy within a large multidisciplinary group (one of the largest world-wide)….. [HER’s] case will be discussed at our multi-disciplinary team meeting where other neurology consultants specialising in epilepsy (usually 5-8), neuropsychiatrists, neuropsychologists and neurosurgeons can all give their opinion about further treatment options.” This team approach is reassurance against any concern – which in any event I am satisfied is not remotely made out – that clinicians are somehow motivated by personal interests as opposed to HER’s welfare.
39. I do not doubt that SR is genuinely motivated by concern for her sister’s wellbeing but I do not accept that SR’s observations of HER over time are sufficient to cast any real doubt on HER’s diagnosis, or on the treatment plans of the clinicians who bear responsibility for her care. Where SR’s observations are at odds with the clinicians’ informed medical views, I prefer the evidence of the clinicians, who are qualified and widely experienced in the relevant medical science. I am concerned that SR’s approach pays too little regard to risk, in pursuit of an agenda which is driven in part at least by historical grievance rather than objective current evaluation. I am concerned that her characterisation of HER’s experience in the care of treating clinicians so far is markedly different to the independent observation of HER’s own representatives that, actually, HER is experiencing a good quality of life, happy and settled in her care arrangements.
40. I have regard to the support of HER’s own representatives for the plan which is proposed by her treating clinicians, and the evidence that, whilst she lacks capacity to understand it, she is compliant with and undistressed by her treatment regime.
Senior Judge Hilder ultimately had little hesitation in finding that the treatment plan proposed by the Trust was in HER’s best interests, although she clarified that she was not endorsing brain surgery (which might potentially be on the cards depending upon the investigations the Trust wished to carry out) – stating “categorically” at paragraph 69 that further proceedings would be required in that event.
Senior Judge Hilder also went on to find that for SR to attend certain appointments “would be likely to be unhelpful, even actually harmful to HER in that it would prevent the appointment from being conducted in the best way possible. I am satisfied that it is in HER’s best interests that SR does NOT attend these appointments. It would be helpful if [Tm] and/or [Tl] were able to accompany her instead” (paragraph 52).
The Trust invited the court to go further and make injunctive orders preventing SR from attending or attempting to attend the appointments. Whilst she was clear she had the jurisdiction to grant such injunctions, Senior Judge Hilder declined to do so, having regard to:
a. the ordinary mechanisms which the Trust has for arranging appointments on that basis – as demonstrated in the plan it will be adopting for matters beyond these proceedings; and
b. SR’s own assurances to the Court that of course she will abide by the decision of the Court; and
c. the views of HER’s own representatives that injunctions are not necessary.
In similar vein, Senior Judge Hilder also declined to grant an injunction to prevent SR from discussing relevant treatment with HER. She noted that she regarded it
62. […] as very serious that SR has – she accepts – deliberately tried to ‘frighten’ HER about her treatment plans – or, more accurately, what SR fears may become her treatment plans. [246] SR accepts that she told HER “there was a chance that she would be left with a permanently hoarse voice, which would seriously impact her ability to sing.” I understand why the Trust seeks the serious measure of injunctions to prevent it from happening again.
63. However, I am also mindful that there are – presently – no restrictions on contact between SR and HER. As Mr. Cisneros points out, in those circumstances, practical enforceability of court-imposed prohibitions must be questionable. In reality, the more effective control would be in respect of contact arrangements. (No one asks the Court to take such steps at present.)
64. More positively, SR herself has now acknowledged that, even in her own desperation, deliberately trying to frighten HER into refusing treatment was not an appropriate thing to do. In my view, that acknowledgment is the best hope that she will not behave in such a way again.
65. At this point, I do not consider it proportionate or appropriate to impose this second requested injunction either. I accept SR’s assertion, repeated several times during the hearing, that of course she will abide by the order of the Court. She should have an opportunity to be as good as her word. If she is, then she has nothing to fear from further court proceedings. If she proves not to be, then the Court can reconsider the position in the light of circumstances at the time.
SR had raised the possibility of being appointed a welfare deputy (but no formal application was before the court). At paragraph 67, Senior Judge Hilder made clear that this was a non-starter:
a. in these proceedings, the Court has determined the welfare issue, so there is no need for appointment of a welfare deputy;
b. should circumstances so change that welfare deputyship is a plausible need, it is unlikely – on the basis of experience to date – that SR could be considered sufficiently neutral and objective in matters of HER’s welfare to be an appropriate candidate.
In a postscript, Senior Judge Hilder noted that:
72, Following the delivery of this judgement, SR asked whether she would be entitled to copies of HER’s medical records. I considered this and, consistent with my decisions set out above, concluded that it would not be in HER’s best interests for SR to be provided with copies of HER’s medical records, unless HER’s treating clinicians consider that such disclosure is in HER’s best interests.
Comment
The Trust’s application to exclude SR’s evidence altogether was perhaps slightly surprising, and Senior Judge Hilder was undoubtedly right to recognise the procedural unfairness of denying SR’s expertise in her sister, even if that expertise could not and did not amount to expertise in the medical matters at the heart of the case. We frequently talking about doctors being the expert in the medicine, and family members (and others) being experts in the person – but this is expert in seeking to assist in seeking to understand the person’s wishes, feelings, beliefs and values. From the judgment, it appears clear that SR was so dominated by concerns about medical matters that she was not, unfortunately, able to assist the court with the expertise that it was really looking to her for, namely as to HER’s wishes, feelings, beliefs and values regarding treatment.
