By Celia Kitzinger, 14th March 2023
“Professor X has no expertise”, says Laura Wareham[1] – the protected party at the centre of this case. She does not want him involved in drawing up her care plan.
This is partly (she says) because of very negative things she’s heard about him from a friend and partly because Professor X “doesn’t believe in Hypermobile Ehlers-Danlos Syndrome. His job is to discount it” (click here for more information about hEDS). She makes an accusation of criminal behaviour against him too, which seems to startle the judge. Her parents, who are parties to this case, also object: “Laura, don’t say that!”.
Laura – who has “a hugely complicated medical background”, including “autistic spectrum disorder”, “bipolar affective disorder” and “Bodily Distress Syndrome – has been in hospital since April 2022 following an emergency admission. She’s been intubated, ventilated and very seriously ill. She’s now stable and is attending the remote hearing (COP 1397774T) from her hospital bed.
Everyone agrees that Laura doesn’t require care in an acute hospital setting and hasn’t done for some time. Everyone agrees she should be discharged. An expert (Dr A) is currently developing a care plan for her and there is a view (from whom is not quite clear) that he needs to work jointly with an expert in infectious diseases. The expert he chose, Professor X, is not someone Laura wants involved.
Background
This case has been in court at least three times before (since August 2022), and I blogged the February hearing at which the problem of the expert was first raised (“Standoff about the appropriate expert: A pragmatic judicial solution”).
At the February hearing, the judge had come up with a pragmatic solution. Since Professor X wasn’t acceptable to Laura, counsel should go back to Dr A and “explain that the confidence of Laura and her parents will be fatally undermined by Professor X’s involvement. Ask [Dr A] if there is someone else who can fulfil that role” – and then see if that person could be available to help with Laura’s care plan. Laura’s parents recommended the name of someone they thought could help and the judge required that name to be put to Dr A as a candidate expert too (if in fact that expert was available).
I hoped to hear today that a suitable infectious diseases expert had been found to work with Dr A, and that Laura’s care plan could be finalised so that she could be discharged soon.
Today’s hearing: 22nd February 2023
The case was heard by Mrs Justice Arbuthnot. At the beginning of the hearing, Scott Mathewson, counsel for the Health Board, briefly summarised the case to date and reported that the parents’ preferred expert was not able and willing to take instruction. But there was “good news”: “There is another doctor, a colleague of Professor X, who is an infectious diseases expert, Dr N. He is also an international expert and he has accepted instruction and Dr A is happy for him to act as his second. My Lady, we regard this as a breakthrough.” (Counsel for the Health Board)
Laura wasn’t happy. In response to the judge’s observation that “Laura has no confidence in Professor X”, Laura added “Or anyone contaminated by him. Which includes a colleague.” Later she said, “I don’t want to be condemned for the rest of my life by someone who isn’t educated or compassionate enough to….” (I don’t know where she was headed with that because her father intervened and spoke over her.)
The view of the Health Board is that “in an ideal world, only experts that Laura approved of would be instructed” but that given the need to find someone quickly (Dr A was to assess Laura in two days’ time and then submit a report with a proposal for discharge), “the balance falls in favour of making the order so that Laura may be discharged to a suitable placement as soon as possible”.
Laura’s father raised a question as to whether in fact an infectious diseases expert was needed: “We’d always been surprised at Dr A’s apparent request to have input from someone in infectious diseases…. Looking at the correspondence we got this morning from our ex-solicitor, it seems it was at the suggestion at the Health Board that an infectious diseases specialist was brought in. And Dr A simply agreed – presumably in ignorance of the extreme distress that would bring to Laura.” (Laura’s father)
Ian Brownhill, counsel representing Laura (via her litigation friend the Official Solicitor) said it is “perfectly clear from Laura that she doesn’t want anything to do with Professor X” and suggested that when Dr A visits Laura in two days’ time to conduct his assessment, he should say what other expert input (if any) he needs, acknowledging that (as the judge put it) Professor X is “out of the question now”. He said: “The Official Solicitor’s position remains the same – Laura ought not to be where she is. Laura doesn’t want to, and ought not to be- I don’t want to say ‘stuck with’- but have something on her medical records that she feels is fundamentally flawed. We are trying to find an even keel while progressing this case. This is important, but there are are many other important issues to resolve – her capacity, her contact with her parents.” (Counsel for Laura)
Both counsel invited the judge to order that Dr A should be “in the driving seat… so if he deems it necessary to have input from Dr N he has permission to rely on that input, and also if the Warehams believe further input is required, there is no objection to them obtaining additional evidence”.
I haven’t seen the final order, but I think it’s to the effect that Dr A should decide if he needs any additional input or not, and if so what kind of additional input, and that he can ask anyone he wants except Professor X (including Dr N, Professor X’s colleague). The judge (apparently reluctantly) indicated that Dr N could be considered as an “expert desktop reviewer of Dr A’s work … if there is nobody else available and the discharge proposals can’t otherwise be done within the timescale. But Dr A will realise there is a risk his work will be undermined by [the Wareham’s] strong views about Dr N – whatever the rights and wrongs of the case, and this is no reflection on either Dr N or Professor X by the way”.
An articulate and eloquent ‘P’
It’s unusual, in my experience, for a protected party to speak out as clearly and confidently as Laura does throughout this hearing.
But Laura Wareham has spoken out publicly before – about her own medical treatment for Ehlers-Danlos Syndrome and the death of her sister Tania who suffered from the same condition and also had cancer (Nottinghamshire Post) and about her fundraising activity for an operation, not available to her on the NHS, to stabilise her neck (ITV, Daily Star)
She’s been very ill and her parents accept that Laura lost capacity to make some or all of her own decisions for a while, but they believe that she has now regained it. So does Laura.
When counsel for the Trust provided a helpful introductory summary for observers, he mentioned the finding from consultant psychiatrist Dr Claudia Camden-Smith that Laura lacks capacity to make her own medical decisions. Laura intervened: “It’s been disputed”. He acknowledged this, explaining that “the matter of capacity is to be determined at the final hearing”. Laura’s intervention led to a rebuke from the judge.
Judge: Don’t interrupt!
Laura: I had my hand up and you ignored me.
Judge: You will have your moment, but not now.
Laura: Fine! (My note: this was said as the kind of ‘fine!’ that means exactly the opposite.)
Later, Laura’s mother raised concerns that Laura’s psychiatric diagnoses amount to a claim that “there’s nothing wrong with [Laura], it’s all in her head” and was going on to explain this when the judge interrupted her, saying “Let’s go back to-“.
Laura: No. I would rather you let her finish her sentence.
Judge: If you interrupt, I’m afraid I’m going to exclude you from the hearing.
I found this quite a challenging exchange: the judge ‘interrupted’ Erica Wareham (literally mid-sentence), but objected to Laura Wareham interjecting in just the same way, to call her out on that. What’s happening here (and in the judge’s earlier exchange with Laura on the matter of ‘interruption’) is a consequence of the judge taking for granted the specialised turn-taking system of the courtroom[2], of which Laura (like most lay participants) is unaware.
Court of Protection hearings are supposed to put “P” (the protected party) at the centre of the case, and that’s clearly where Laura wants to be. She’s asked for full access to both her own medical records and to the Court of Protection bundle. (It wasn’t clear to me that either was forthcoming.)
Laura also complained about the way the case had been listed on the Royal Courts of Justice Daily Cause List (using just her initials, “LW”):
Laura: I’m offended that you’ve taken my name off the case.
Judge: I don’t know what you mean.
Laura: It says ‘LW’. I am me, and I will be referred to as me.
Judge: Oh, right. That is to do with listings.
Laura also corrected the judge at one point when she heard the judge mis-speak the family name: “Our name is WareHAM, not WareING”.
This was an interesting hearing because – like other hearings in which articulate and determined protected parties participate fully – the role of the person’s own wishes and feelings, and their place in ‘best interests’ decision-making is thrown into sharp relief. I have no doubt that Laura (and her parents) will oppose a court determination that Laura continues to lack capacity. And whatever the court finding on capacity, Laura’s wishes are going to have to play a key role in any future ‘best interests’ decisions made about her[3].
The next hearing will be for a date after 17th April 2023 (we’ll update when we have a precise date), and I believe it will be concerned with Laura Wareham’s capacity to make her own decisions. I will be interested to see if Laura’s name appears on the listing, as she has requested. The Open Justice Court of Protection Project has many concerns about errors and omission in listings and regularly raises them with HMCTS, with mixed success!
Celia Kitzinger is co-director of the Open Justice Court of Protection Project. She’s observed more than 400 hearings and is a frequent blogger. You can find her on LinkedIn, and on Twitter @KitzingerCelia
[1] The court order enables me to name Laura Wareham (and her parents, Conrad Wareham and Erica Wareham) but not the hospital where she is being treated, or any of the professionals involved in her care. All quotations are based on touch-typed contemporaneous notes and are as accurate as I can make them, given that we are not allowed to audio-record court hearings. They are unlikely to be 100% verbatim.
[2] See J Maxwell Atkinson & Paul Drew, Order in Court (1979) Palgrave Macmillan
[3] Compare Influencing ‘best interests’ decisions: An eloquent incapacitious P and Articulate, Eloquent and Passionate – but does P have the Mental Capacity to Make Decisions about Four Areas of her own Life
Promoting Open Justice in the Court of Protection 