Medical treatment for people with learning disabilities: Telling Robert Bourn’s story and the challenges of ‘transparency’

By Celia Kitzinger, 21st September 2022

The BBC has a story it wants to tell in a forthcoming Panorama programme.  

It’s about Robert Bourn, a man with a learning disability who was diagnosed with cancer.  

The story is about the challenges in getting appropriate medical treatment for him – and the disparities in healthcare that mean that people with learning disabilities are often less likely to be treated.

But, until today, I couldn’t tell you whose story it was. When I first blogged about Robert and his mother Sharon, more than 18 months ago, when the case was last in court, I had to use pseudonyms.

Initially, I couldn’t name Robert, or his mother Sharon Bourn, because they were covered by an injunction preventing anyone from identifying Robert or any member of his family as involved in the Court of Protection[1].  

What’s in a name?  

In a  much-quoted passage from the Supreme Court case, Guardian News and Media Ltd & Ors, Re HM Treasury v Ahmed & Ors ([2010] UKSC 1), Lord Rodger says:  “What’s in a name?”  ‘A lot’, the press would answer. This is because stories about particular individuals are simply much more attractive to readers than stories about unidentified people. It is just human nature.” Without the names of the people involved, a story can become “austere, abstract … devoid of much of its human interest”.  In the criminal context,  “a report of a sensational trial without revealing the identity of the defendant would be a very much disembodied trial … On the other hand, if newspapers can identify the people concerned, they may be able to give a more vivid and compelling account which will stimulate discussion” (§64 & 65).

And so, in preparation for the Panorama programme, the BBC (represented by Claire Overman of Doughty Street Chambers) had made an application to vary the Transparency Order (issued by Lieven J, dated 27thJanuary 2021), so as to enable them to identify Robert Bourn, and his family, and the hospital at which Robert was treated[2] in their documentary. 

The BBC’s case was in court on 16th September 2022, before Mr Justice Nicholas Francis.

Counsel for the BBC described what the programme would be about:

… the BBC seeks to explore, through a number of case studies, the quality of care and life saving treatment options received by people with learning disabilities.  This is an under-reported topic that gives rise to important public interest concerns, not least given that ‘according to NHS figures, 1,200 people with a learning disability die from an avoidable cause every year’….” (from the BBC’s Position Statement)

Counsel for Robert Bourn (Parishil Patel KC of 39 Essex Chambers, instructed by Sharon Bourn as Robert’s litigation friend) described it like this:

The BBC ‘wishes to explore, through the telling of [Robert]’s and his family’s story’ issues of “crucial public importance, namely that their experience brings into sharp focus important questions concerning the equality of medical treatment, and in particular the impact of learning disabilities on a patient’s prospects of receiving live-saving treatment’.”  (from the Position Statement filed on behalf of Robert Bourn).

It’s important to be able to name Robert and his family (said the BBC) in order to tell his story in “a meaningful and identifiable way” – the same way that the other families in the programme, who’ve not been part of Court of Protection proceedings, can tell their stories as identifiable, named people.

An anonymised version of the story would lose much of its human impact, and is not in accordance with the family wishes….  The family’s Art. 10 rights do not simply encompass a right to tell that story, but also to tell it in the way they wish (that is, identifiably)…. One advantage of doing so is to allow the family’s story to resonate with the general public.” (from the BBC’s Position Statement)

Sharon Bourn, as litigation friend for her son, strongly supported the BBC’s application.

She agrees with the public issue of raising awareness of inequality of access to medical treatment for persons with learning disabilities.  She recognises the powerful impact of identifying Robert and the family in any reporting. She considers that Robert, if he could communicate his wishes, would agree.  Further, she explains how Robert benefitted from learning about Ian Shaw[3] who was in a similar position to Robert and whose story was reported by the BBC. Lastly, she does not consider that there would be any (detrimental) impact to Robert by his naming and broadcasting in the proposed programme.”  (from the Position Statement filed on behalf of Robert Bourn).

Since I am naming Robert Bourn and his mother, Sharon Bourn, in this blog post, it must already be evident that the judge gave permission for them to be publicly identified.  But this blog is not really about what the judge decided but about the judge’s reasoning in making the decisions he did about transparency, and the process by which he made his decisions.  

So, I’ll first give a brief account of Robert Bourn’s story, and why it’s an important story for the BBC to tell (and for all of us to hear), and then describe how the hearing unfolded.  I’ll explain how the judge came to the decision that Robert Bourn’s family could be identified, and why the judge did not permit identification of the treating clinicians, or the hospital in which Robert was treated. I’ll end with some “Reflections” on the hearing.

Robert Bourn’s story

Two years ago, in September 2020, Robert Bourn was diagnosed with testicular cancer.

He underwent surgical removal of his left testicle but by the end of the year it had become clear that the cancer had spread to his lymph nodes and he was diagnosed with “metastatic germ cell cancer”.  This type of cancer has a high cure rate, with chemotherapy.

Robert also has Fragile X Syndrome and a learning disability – along with “atypical severe autism, dysphagia and … limited verbal communication”.  Everyone agrees that Robert  doesn’t have capacity to make his own decisions about medical treatment (s. 3 Mental Capacity Act 2005).  This means that decisions have to be made for him in his best interests (s. 4 Mental Capacity Act 2005).

The initial response of his treating team, says his mother, was to say there were no treatment options. Comfort measures only were proposed and a palliative care referral was made.

In an earlier blog post, based on an interview with Robert’s mother, I quoted her description of what happened between her and the Robert’s doctor:

I asked the doctor, ‘So what’s next?’.  The doctor dropped his head and looked at the floor and said, ‘There’s nothing we can do’.  I said, ‘Pardon?’ – not as in I haven’t heard you, but please bloody explain yourself.  He kept looking at the floor and saying, ‘there’s nothing we can do’.  So, I said again, ‘What’s next?’ – meaning, what kind of treatment? He said, ‘He’s got twelve months’. To say I lost it is an understatement.  I was screaming, crying, punching the walls with my fists.  The learning disability nurse sat there like a rabbit in the headlights saying, ‘I’m so sorry’. Well, ‘Sorry isn’t what I want!’ I begged him, I put my hands before my face in the prayer position and I begged him to help my son and he kept saying ‘There’s nothing we can do’.  The day the doctor said he couldn’t do anything and my son had 12 months left to live, it was a case of we either accept it, or we do something about it. I’m not really one for saying, ‘Oh, okay we’ll do what you say’.  The Mama Bear instinct kicks in.  I wanted to see what else could be done.”

There are parallels between Robert Bourn’s story and that of other learning-disabled adults who’ve been refused treatment.

The BBC publicised Ian Shaw’s story in July 2017. As in Robert Bourn’s case, his doctors had decided not to treat his cancer: he also has “learning difficulties, autism and epilepsy”. According to one expert, It is difficult to escape the suspicion that this [i.e. Shaw’s learning disability and autism] has somehow influenced the doctors’ decision (Irene Tuffrey-Wijne, Professor of Intellectual Disability and Palliative Care). 

After seeing the BBC report, a psychiatrist, Dr Julian Wilson, asked to be put in touch with the family.

Knowing that testicular cancer is one of the most treatable cancers that there is, I was surprised that a decision had been made not to provide treatment and I wanted to understand what that was about…. My concern was that perhaps judgements were made about the quality of life that he has because of his severe learning disabilities and because of the physical impact of how the cancer has spread…  I’m also clearly aware that providing cancer treatment for someone with the problems that Ian has is a real challenge.  It is really difficult to give the best possible treatment to somebody in that situation, but my view is those challenges can be overcome.”

Following Dr Julian Wilson’s intervention, Ian Shaw received treatment and the BBC  reported in December 2017 that he was doing well. 

Sharon Bourn learned about Ian Shaw when someone posted these BBC reports on her social media page. She  remembers feeling “shocked” when she read the story: it was so similar to what was now happening to her own son and (via Kirsty Stuart, her solicitor at Irwin Mitchell) she made contact with Ian’s mother and got a second opinion (paid for by the Trust) from the doctor who’d treated Ian.  Finding Ian Shaw’s family, and getting solicitors involved, was “the light at the end of the tunnel”.  

It’s in part because she found Ian Shaw’s story so important in enabling her to advocate for her son that she wants now to be, like Ian Shaw’s mother, in a position to help others, which means making her story public and ensuring their family story (and name) is known.

Why Robert Bourn’s story is “of proper public interest”

The phrase “of proper public interest” is taken from an earlier Court of Protection case, PH v Brighton and Hove City Council [2021] EWCOP 63 (§29(i)).  That case, heard by HHJ Carolyn Hilder, concerned a (successful) application from the BBC to name Tony Hickmott, an autistic man with learning disabilities sectioned under the Mental Health Act in 2001 and detained in a specialist hospital for almost 20 years.  In that case, the applicants made the case that: “The wider public interest in highlighting Mr Hickmott’s case as an example of an endemic issue concerning inappropriate confinement of individuals with learning disabilities is a matter which needs to be publicly aired” (§18 PH v Brighton and Hove City Council [2021] EWCOP 63).  

Likewise, in this case, Robert Bourn’s story is an example of “endemic issues” that arise in relation to medical treatment decisions for people with learning disabilities, and this is “a matter which needs to be publicly aired”.  

There was no debate in court about this – the judge readily accepted (as did all parties) the public importance of Robert Bourn’s story and the need for it to be told. It seemed also to be accepted by all parties that identification of Robert and his family was necessary for the story to be told in ways that would most engage public interest.

My own research turned up the Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD) which found that nearly a quarter (22%) of people with intellectual disabilities were younger than 50 years when they died, compared with about 9% of the general population. 

Some of these deaths are described as “avoidable”, i.e. they wouldn’t have happened with good quality health care.  Avoidable deaths were much more common in people with intellectual disabilities (37%) than in the general population of England and Wales (13%).  

According to  Professor Irene Tuffrey-Wijne, author of “Living with Learning Disabilities: Dying with Cancer” there are “unconscious biases” which lead to health inequalities faced by people with learning disabilities. 

She says of Ian Shaw: “I’m sure doctors and nurses all want the best for their patients. Nobody will have looked at Ian and thought, consciously, ‘What’s the point of this man’s life? Letting him slip away is the kindest thing, surely.’ But there are undoubtedly unconscious biases, putting people with learning disabilities at risk.”

Her research finds: “delays and omissions of care, in particular delays and omissions of basic nursing care (for example, unmet nutrition needs) and delays and omissions of medical treatment (for example, treatment not given because of perceived inability to cope with or consent to treatment or because of staff assumptions about the patient’s quality of life).” (p. xvi, Scientific Summary)

The CIPOLD found that contributory factors to premature deaths included problems in advance care planning, failings in adherence to the Mental Capacity Act, living in inappropriate accommodation, failure to adjust care as needs changed and carers not feeling listened to. 

Two of the CIPOLD’s important recommendations are:  

7. People with learning disabilities to have access to the same investigations and treatments as anyone else, but acknowledging and accommodating that they may need to be delivered differently to achieve the same outcome.


15. All decisions that a person with learning disabilities is to receive palliative care only should be supported by the framework of the mental capacity act and the person referred to a specialist palliative care team.

CIPOLD

The Open Justice Court of Protection Project has reported on several other cases concerning serious medical treatment for learning disabled people. We covered the case of the teenager, William Verden,  who was initially not offered a kidney transplant, but received one after his mother advocated for him, leading to a Court of Protection ruling that a kidney transplant was in his best interests.  He is said to be doing well (“Autistic kidney-row teen’s transplant ‘a success’”). Our blogs include: “ Is a kidney transplant in his best interests?” and  “Listen to him, listen to his mother: The William Verden hearing”.  

There can be (as Dr Julian Wilson says) “challenges” in providing medical treatment to people who cannot understand what is happening or find it impossible to “co-operate” with medical procedures.  

There are some people with learning disabilities who communicate their resistance to  treatment, showing or saying that they do not want it (e.g. “Surgery for scoliosis when P indicates he doesn’t want it”; “Medical treatment, undue influence and delayed puberty: A baffling case“; “Capacity and elective caesarean”).  When we’re deemed to have capacity to make a medical decision – i.e. we can understand, retain and weigh the information relevant to the decision that needs to be made –  we can of course refuse treatment (even if we die as a result).  But when someone refuses treatment without understanding how it would help them, or what the consequences would be of not having treatment, then they are deemed not to have capacity to make the decision for themselves and that’s when others must make ‘best interests’ decisions on their behalf.  When these cases come to court, the judge often rules that treatment is in the person’s best interests, despite their expressed resistance to it.  (Similar issues arise in relation to people with mental health issues, e.g. “Endoscopic dilatation against P’s wishes?”)

In sum, Robert Bourn’s story is important because it has resonances with the stories of many other people with learning disabilities (and some with mental health issues) who, for a variety of reasons, do not receive the same high quality health care offered to other people. Robert Bourn, Ian Shaw, and William Verden are three people whose stories exemplify (as the BBC says) “an important public interest concern”.  

Use of their names and identities brings their stories to life in a way anonymised versions could not.  

The hearing on 16th September 2022

At the beginning of the hearing Mr Justice Francis, who had read the parties’ Position Statements and was (broadly) aware of what the BBC was requesting, said that he understood there was “a large measure of agreement” between the parties and commented that the application was “not that remarkable or dramatic anyway”.  

He was asked to consider whether the Transparency Order should or should not permit: (1) naming Robert Bourn and his family; (2) Naming the treating clinicians; and (3) Naming the hospital.

1. Naming Robert Bourn and his family

 It was pretty clear from the outset that the judge would give permission for the Bourn family to be named, as the BBC was requesting.  Nobody opposed this and the judge signalled early on that he understood the public interest in the case and was inclined to vary the Transparency Order in part because “this is a case with a happy outcome… it would be a very different case if we had a patient who was deteriorating or even dying …  this is not a case where publicity is likely to jeopardise any ongoing treatment”.

The judge also acknowledged that Sharon Bourn had been assisted by Ian Shaw’s story (“she was in contact with Shaw’s family and it was able to help her… and Mrs Bourn would wish to be able to help others?”) and that “the parties reached agreement about treatment, and if agreement had been reached without coming to court there would have been no reporting restriction”. 

These seemed salient considerations to him – whereas the BBC’s claim that “respect for Article 8 rights is baked into the editorial process” and the production team “will follow a ‘duty of care’ procedure” did not seem particularly to reassure him: “I can’t sit here and say ‘oh well, with the BBC it’s bound to be alright’, can I![4]

2. Naming the treating clinicians

On the day of this hearing, the  names of the treating clinicians were already publicly available, and had been for some time.  The previous judge,  Mrs Justice Lieven had included them in her judgment back in January 2021 and the judgment was on public websites such as BAILII.   That judgment still appears on BAILLII  (The Newcastle Upon Tyne Hospitals NHS Foundation Trust v Bourn (Rev1) [2021] EWCOP 11) but it’s now redacted and the names of the treating clinicians removed: they’re now Dr X and Dr Y.  

It’s pretty unusual for judges to make orders that information already in the public domain should be removed, but I have experienced this in an earlier case.  When I successfully challenged a Transparency Order preventing me from referring to P’s nationality, the judge – in an effort to avoid jigsaw identification – ordered that other information about P (specifically, the number of children he had fathered) should be redacted from a Court of Appeal judgment that had already be published on a public website (see He’s Polish: Challenging reporting restrictions).

It was counsel for the Trust who argued for the new restriction on naming the treating clinicians.  The BBC was not applying to name them and I think counsel for the mother was neutral on the matter.

In making a decision about naming clinicians, Mr Justice Francis, the judge in this case, referred explicitly to the fact that he had been the judge in the case of Charlie Gard – a sick baby whose life-support was withdrawn in Great Ormond Street Hospital.  This case  was reported very widely internationally (e.g. in this BBC report – and here’s the judgment).  

Francis J referred several times to the Charlie Gard case (sometimes by name, sometimes obliquely) in the context of abuse and “vilification” of clinicians.  It had clearly affected him deeply.  

Media reports at the time make clear how badly clinicians were affected by public hostility to them.  Under the headline “Charlie Gard: Death threats sent to Great Ormond Street staff”, the BBC reports that police had been called after families were “harassed” and “unacceptable behaviour” was recorded in the hospital.  The hospital was exposed to a “shocking and disgraceful tide of hostility and disturbance,” and “thousands of abusive messages have been sent to doctors and nurses whose life’s work is to care for sick children”.

In his judgment on the Charlie Gard case, Mr Justice Francis wrote: 

It has sadly come in to the public domain recently that some of the staff at that hospital have been subjected to serious threats and abuse. I made it clear before, and make it clear now, that I am completely satisfied that these fine parents have nothing whatever to do with those threats. Each and every man and woman working at Great Ormond Street Hospital is dedicated to the treatment of sick, very often desperately sick, children. These surgeons, physicians, doctors, nurses, ancillary staff, technicians and all others working there are dedicated to the pursuit of excellence in the treatment of sick children and it is in my judgment a disgrace that they should have been subjected to any form of abuse whatsoever and it is to be condemned.”

(Francis J, §16 Charlie Gard judgment). 

It seemed clear to me that the Charlie Gard case influenced his approach to today’s decisions.

He asked several times if the BBC was asking to name clinicians and was reassured that they were not – albeit (as counsel for the BBC reiterated) “the BBC wishes to put on record it doesn’t accept that responsible reporting would necessarily lead to violation of clinicians’ Art. 8 rights.  It accepts that sometimes this can be so, in particular cases where treatment issues raise strong feelings, but not as a general principle”.  

In response to this point, Francis J immediately referred to “hideous recent cases where people have been camping outside hospitals, chanting the names of nurses and consultants and making their lives an absolute misery”.  He said that “people who work for the NHS are entitled to be protected from that”.  Counsel for the BBC said (again) that they accepted this in particular cases, “but not as a general principle” and (again) that they were not seeking to name the Consultant Oncologist or Critical Care Consultant responsible for Robert Bourn’s treatment.

Counsel for Robert Bourn (Parishil Patel KC) raised the question of whether the clinicians could be named (notwithstanding the fact that the BBC was not actually seeking to name them) on the grounds that in fact the previous judicial decision (by Lieven J) had been that there was no reason to prevent anyone from naming them – although due to an oversight from counsel, this had not been reflected in a revised Transparency Order:  “You can go behind the judgment and keep the Transparency Order, even though that wasn’t the intention of the judge. Maybe that is the course you wish to take. But I’ve set out in my position statement that it is a matter for the court to determine if there is to be derogation from the open justice principle.”  

In his Position Statement, counsel for Robert Bourn points out that “whilst the BBC do not seek to vary the RRO” (the Reporting Restriction Order) to permit identification of Robert’s treating clinicians, “it is of course a matter for the court to determine whether any rights asserted by the clinicians are strictly necessary as to amount to a derogation of the open justice principle“. The Position Statement continues:

The court will have in mind that usually the restriction of reporting on their [the clinicians’] identity in any order is to ensure that P’s identity (and right to privacy) is not compromised. That is not a proper basis now upon which to continue the restriction (even if it were the case previously). Further, there does not appear to be any separate article 8 basis that would give rise to the need for continued restriction: see Charlie Gard [2017] EWHC 1909 and Alfie Evans [2018] EWCA Civ. 805.”

(§22 Position Statement on behalf of Robert Bourn)

The judge’s response was: “I have to make sure those working in these very difficult cases don’t face vilification in the media for doing their job”.

Parishil Patel KC said that this was of course accepted in cases such as Charlie Gard and Alfie Evans[5], but “the risk of harm must be based on some pretty clear evidence”.  No evidence of risk of harm had been presented to the court in this case.

Counsel for the Trust, Emma Sutton of Serjeants’ Inn claimed that naming clinicians “on the facts now” – given the “different landscape” of the Panorama programme (not anticipated at the time Lieven J made her judgment)  – would “inevitably cause them huge problems”.  

So you’re saying it’s obvious there’s a risk?” asked the judge.  “Absolutely”, she replied. whilst it is accepted that the BBC documentary does not set about to vilify clinicians, and is about open debate regarding whether those with learning disabilities are treated as second class citizens –the real risk is that it will become about specific clinicians, and that’s inappropriate, and not the objective which the BBC set out to achieve ”.  

She read out parts of a judgment in another case (Abbasi v Newcastle upon Tyne Hospitals NHS Foundation Trust [2021] EWHC 1699 (Fam)) heard by the President of the Family Court.  In Abbasi, the parents of two children who had died (while under the jurisdiction of the High Court) sought permission to be released from the reporting restriction orders, so that they could speak publicly about their experiences and, in doing so, be free to identify NHS staff who were involved in caring for their children.  The applications were refused.  The trust  had submitted witness statements about the risk of harm caused if the reporting restriction orders were to be relaxed.  Points they made, read out and commented on by Emma Sutton for the Trust (the same Trust,Newcastle upon Tyne Hospitals NHS Foundation Trust) included:

  • Naming staff will be detrimental to the hospital staff and the hospital’s ability to deliver care to children;
  • Concern as to the invasion of privacy into the private lives of staff;
  • Experience from other cases demonstrates that, once named, staff may become vulnerable to physical attacks and/or personal attacks in social or mainstream media;
  • The experience of previous cases and wider research indicates that publicity is likely to have an adverse impact on the mental health and wellbeing of staff;
  • The two hospitals concerned are busy regional/national centres for paediatric care and both are teaching hospitals. Any step which may significantly destabilise the staff is likely to have a detrimental impact upon the many children and families who depend on these hospitals to provide care for very sick children;

These (she said) “are generic points accepted by the President in relation to the same Trust” and they readily translate from paediatric care (in Abbasi)  to adult care (in relation to Robert Bourn).  

Counsel for the BBC repeated that the BBC was not seeking to name the treating clinicians.  

The judge called a short recess to read the Abbasi judgment.

3. Naming the Hospital

The only significant disagreement between the parties was about naming the hospital at which Robert Bourn was treated. The BBC wanted to name the hospital.  The Trust opposed it, on the grounds that naming the hospital could lead to identification of the individual clinicians involved in Robert’s care.

Parishil Patel KC reported that there were 27 clinicians and 17 medical oncologists in the Trust meaning “there is no risk of identifying particular clinicians if the hospital is named”. The judge asked how many oncologists were based in the particular hospital in which Robert Bourn was treated (given there are apparently 16 hospitals in the Trust) and nobody knew.

Judge: “I don’t want to be pedantic – well, perhaps it’s the job of the judge to be pedantic, but I don’t want to be difficult about this.  Everyone agrees the Trust can be named, but the BBC wants to name the hospital.  If there were only one treating clinician in that hospital you probably wouldn’t support me naming the hospital, because it would be naming the clinician, but if there were 17 it might be different. So, I need to know how many oncologists there are at that hospital, don’t I.”  

The judge suggested someone could “make a call right now” to find out and suspended the hearing: “as soon as you know the answer, get me back in”.

Ten minutes later, after recalling the judge, counsel for the Trust reported a number which meant (she said) “a real risk of jigsaw identification”.

Counsel for the BBC said “I still maintain it would take a very determined member of the public to locate the person and then to take action against them.”

Believe me”, said the judge, “there are plenty of very determined people out there.” He made comparison (again) to cases he was familiar with in the Family Division (including cases where people had sought to uncover the names of sexual abusers).  Given that the information is “publicly available on websites” and “it’s not about rummaging about in dark corridors”, he thought it “doesn’t take much of a genius” to identify the clinicians.  

There was some backward and forward on this: the websites don’t specify the oncologists’ specialities; nonetheless, said Emma Sutton, “my instructing solicitors were able very easily to identify them on the website”; could a phone call to the hospital uncover the information?; if Panorama indicated the gender of the consultants (as opposed to deploying “the grammatically irritating use of ‘they’” [Judge]) that would add to their identifiability… and so on.  

Parishil Patel KC reiterated that there was no evidence of risk to the clinicians to counter the Article 10 right to freedom of information (for the family, for the press, and for the public).

Judge: I don’t know what the programme is going to say. I infer there’s going to be some criticism, and that means I’ve got to consider whether the identity of the treating clinicians should be protected.

Counsel:  To put it a different way: is it necessary in order to avoid the risk of a person being targeted to restrict his or her identity. You have to ask if it’s strictly necessary.

Eventually the judge came up with what he described as a “compromise solution” – to make the more restrictive order (that the hospital can’t be named) at the moment, “and if, when the programme is more or less put together, they feel it just doesn’t work, I give them liberty to apply for a variation and at that later stage view the programme and it might be possible for me, or Mrs Justice Lieven, to vary the order”. 

Claire Overman (for the BBC) took instruction on that point (her client(s) from the BBC were seated in court behind her).  The subsequent exchange seemed to me quite awkward:

Overman: My client suggests perhaps the way forward is to include the hospital in the reporting restrictions, but with permission to the BBC to apply to vary that in future, but not with that conditional on showing the programme.

Judge:  You mean I might put it on You Tube?

Overman:  No.  We just think editorially that’s difficult.

Judge: We do have the ability to keep secrets up here on the bench. 

As Lord Hoffmann observed in Campbell v MGN Ltd [2004] 2 AC 457, 474 § 59, “judges are not newspaper editors” – nor are they documentary editors: the threat to journalistic independence posed by revealing a programme to a judge in advance of broadcasting it is clearly (as I heard it) the red flag issue for the BBC, which the judge in this exchange seemed not to grasp, being oriented instead to the need to keep the unfinished programme ‘secret’. 

Judgment

The hearing ended with a short oral judgment.

Oddly (to me) the judge began by saying that Robert Bourn’s story was “a good news story – he has recovered from his cancer: that’s the overwhelming part of this case we should all be concentrating on”.  I was a bit surprised to be told what aspect of the case I should be concentrating on – and I don’t suppose the BBC (or the family) much appreciated this, since the Panorama programme is obviously not going to concentrate on telling a heart-warming recovery story about Robert, but rather (as the BBC submission makes clear) to use his story as a case study to explore inequalities in health care.

The judge then referred to the Transparency Order made by Lieven J as being “in the usual terms” – by which I took him to mean, based on the template available on the judiciary website here.  In fact, this template refers explicitly to the identity of P and of P’s family members,  but not to clinicians’ identities, as the subject matter of the injunction.  I assume that the draft order presented to Lieven J at the last hearing did include clinicians (because she specifically said that it should not),  in which case the draft order was not in fact “in the usual terms”, and since it was not subsequently amended in line with Lieven J’s decision that clinicians can be identified, there no extant Transparency Order “in the usual terms”.

The judge then said that Lieven J “broke her order herself by referring to the names of the treating clinicians in her judgment”.  I believe this to be factually incorrect.  I was at the previous hearing and heard Lieven J say that she was “not inclined to anonymise the treating clinicians” and was “very unconvinced” that this was necessary. She did not break her own order.  She never made an order restricting the publication of clinicians’ names.

After the judgment, when counsel for the Trust was discussing the need to remove Lieven J’s judgment from public websites and amend it by redacting the clinicians’ names in the light of the decision the judge had just made, Prishil Patel KC alerted the judge to his error.  He said of Lieven J, “She didn’t make a mistake. She intended to name the clinicians”. The judge accepted this, remarking “You forgot to amend the TO” – which is, I believe, the accurate version.  

So, this point did get cleared up in the end, but only, it seems, after the judgement, when the judge accepted the correction.   During the course of the hearing, the judge seemed not to be fully aware of the fact that he was inclining towards a decision to impose more restrictive reporting requirements (in relation to the clinicians) than those decided on by Lieven J.

The judicial decisions were as follows:

1. Decision on naming the family

The judge accepted that “to give the full picture to the viewing public they [the BBC] need to personalise it” and decided in favour of  “Robert’s right to full unrestricted reporting”, which the family wholly support, removing the prohibition (imposed by Lieven J) on identification of Robert Bourn and his family.

2.  Decision on naming the clinicians

My impression, right from the beginning of the hearing, was that the judge was never going to allow the clinicians to be named. As the BBC was not asking to name the clinicians, this wasn’t specifically addressed in the judgment, but the judge’s view of the absolute necessity of protecting clinicians’ identity was apparent when he addressed the matter of naming the hospital at which Robert was treated.

3.  Decision on naming the hospital

The decision was that the hospital could not be named because it might lead to identification of the treating clinicians.

In accounting for this decision, the judge returned again to the case of Charlie Gard, referring to “the appalling conduct” of some members of the public in that case (and in the Alfie Evans case).  He commented “A number of my judicial colleagues were surprised when I restricted the identity of the clinicians treating Charlie Gard, because it was not common practice to do that then.  I’m not saying ‘well done me!’, but what a good thing that order was made.  It’s hard to know how the public is going to react….” (Judge).

He then relied on the Abbasi case (referred to him by Emma Sutton for the Trust) and read out two paragraphs from the judgment:

The manner in which social media may now be deployed to name and pillory an individual is well established and the experience of the clinicians treating child patients in cases which achieve publicity, such as those of Charlie Gard and Alfie Evans, demonstrate the highly adverse impact becoming the focus of a media storm may have on treating clinicians. The need for openness and transparency in these difficult, important and, often, controversial cases is critical but can, in the judgment of the court, be more than adequately met through the court’s judgments without the need for identifying those who have cared for M with devotion since September 2019.” 

(§62 Abbasi v Newcastle upon Tyne Hospitals NHS Foundation Trust [2021] EWHC 1699 (Fam))

Why should the law tolerate and support a situation in which conscientious and caring professionals, who have not been found to be at fault in any manner, are at risk of harassment and vilification simply for doing their job? In my view the law should not do so, and it is wrong that the law should require those for whom the protection of anonymity is sought in a case such as this to have to establish ‘compelling reasons’ before the court can provide that protection.”

 (§96 Abbasi v Newcastle upon Tyne Hospitals NHS Foundation Trust [2021] EWHC 1699 (Fam))

With regard to a “possible compromise”, the judge reiterated: “If, when the programme is in the latter stages of being concluded, those with editorial control say this simply doesn’t work without naming the hospital, I’m not ruling out the possibility that I would – or Mrs Justice Lieven would, if it came to her – amend the order to permit naming the hospital.  So, I invite those drafting the order to include that I give the applicant liberty to apply to vary the Transparency Order”. 

The judge ended the hearing by thanking Sharon Bourn for coming to court, and saying that he’d watch the Panorama programme when it is aired.

Reflections

I appreciate that, as an observer, I don’t have access to all the information that was taken into account by the court.  Although I have the Position Statements for all three parties (thank you to counsel for sending them), there’s a lot more information in the court bundle.

Nonetheless, the judge seemed to me to take a relatively cursory and ‘light touch’ approach to transparency issues, certainly compared with other hearings I’ve observed concerned with whether identification of P and/or hospitals and/or treating clinicians should be permitted or not. I have to say I expected more in-depth analysis, evaluation and balancing of the Art 8 and Art 10 issues involved in this case.

The judge’s decision to permit naming of family seemed pretty much a fait accompli right from the beginning of the hearing, presaged by his description of the request as “not that remarkable or dramatic anyway”.  It did strike me that he gave minimal consideration to what exactly Robert’s role would be in the Panorama programme (presumably he’ll be filmed, though I don’t think this was explicitly stated?) and to the effect on Robert.  

 A friend I discussed this with expressed serious concern about the invasion of Robert’s privacy: “if it were me” he said “I wouldn’t want to appear in a programme about my testicles”.  

The judge did check that “if Robert had capacity to consent to being named, he would do so?” (to which counsel for the BBC replied: “That’s the evidence of his mother, yes”). But as  I’ve said several times in the context of disputes about COVID-19 vaccination, I’m inclined to be sceptical of counter-factual claims about what a never-capacitous P would or would not decide if they did have capacity. Their putative wishes have a remarkable tendency to align with whatever position is taken by the person articulating them. (Check out the section on  “Refusing Covid vaccination for a person who has never had capacity to refuse for themselves” in “The politics of the pandemic in the Court of Protection”)

The relatively cursory consideration of Robert’s wishes and feelings about his forthcoming media appearance (and any details as to what it will involve) contrasts markedly with other hearings I’ve observed in which P was identified by name (e.g. “Waiving anonymity to promote care home visiting rights: Michelle Davies Part 1” and the William Verden case).

The question of whether or not the clinicians could be identified seemed to me to be driven by the judge’s evident concern to protect them from possible “vilification” without any evidence at all that this was a realistic risk.  I wondered why the treating clinicians had not submitted any evidence about the perceived risks to them of being named: in the absence of that, counsel for the Trust had to resort to concerns raised by different clinicians involved in an earlier case involving young children, which I don’t consider comparable.

The judge’s reiterated concerns with the (undoubtedly awful) experiences of clinicians in relation to Charlie Gard and Alfie Evans did not seem relevant to this particular, and very different, case.  The pro-life groups that orchestrated media campaigns and whipped up public outrage by using inflammatory language about “murder” in these two cases (and many others involving treatment withdrawal from babies and young children) have not been involved in Robert Bourn’s case.  

A better comparison is with the case of William Verden – who was also initially refused life-saving medical treatment (a kidney transplant) but subsequently received one after the Court of Protection ruled it was in his best interests to do so – and is apparently recovering well. Despite the fact that the hospital is named (the Royal Manchester Children’s Hospital) in media outlets, there have been no reports of “vilification” of staff, nor any witch hunt against those responsible for William’s care.

The judge’s remark to counsel for the BBC that he was “hardly likely to give you more than you’re asking for” (i.e. permission to name the clinicians, since the BBC were asking only to name the hospital) seemed to me problematic.  First, because  the previous judge had intended that the clinicians should be named and named them in her judgment. A decision to prevent naming of the clinicians reversed the previous judgment – admittedly (as counsel for the Trust said) in the new context of the Panorama programme and the huge exposure that entails: I don’t think the fact that he was reversing Lieven’s decision was fully addressed or the reasons for the divergent decisions properly explored.  Second, because there is something unattractive to me, as an advocate of open justice, in the proposition that a judge would limit his consideration of transparency to matters on which he is specifically petitioned, thereby permitting the least possible information to enter the public domain. If transparency is (as the Vice President says)  “central to the philosophy of the Court of Protection” then judges should surely take the initiative (as did Lieven J) in considering whether it is really necessary to restrict the publication of particular information.

I recognise the very significant concerns expressed by Francis J on the basis of his experience in the Charlie Gard case.  I think a different judge might well have made a different decision – or at least arrived at the same decision in a different way, giving more explicit consideration to Article 10 rights of freedom of information.  I was surprised –  and a bit disappointed – not so much with the outcomes of this hearing , but with the process by which those outcomes were reached. Neither the decision to allow the family to be named (at the cost of Robert’s right to privacy), nor the decision to forbid publication of the names of the treating clinicians (at the cost of the public’s right to know who they were) seem – to my mind – to have been sufficiently evidenced or robustly argued. I suspect the BBC will be back in court asking for a variation to permit naming the hospital.

Watching this hearing was a salutary experience, graphically illustrating both the challenges of transparency, and the importance of  “making disabled lives visible” both within and beyond the Court of Protection. 

Postscript: I’ve had to delay publication of this blog post for two days while waiting for Lieven J’s judgment naming the clinicians to be removed from public websites and redacted to remove their names.

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


[1] For more information about so-called ‘Transparency Orders’, which are pretty much routine and automatic in the Court of Protection, see my blog post, “Transparency Orders: Reflections from a public observer”.  I have no record of actually ever having received a Transparency Order to cover the hearing on 27th January 2022, but the judge ran through it at the beginning of the hearing, emphasising that we should not identify P, or his family, or where they were living.

[2] To clarify: the BBC did not apply to name the treating clinicians – which was prohibited by the Transparency Order.  However, during the hearing before Lieven J (which I attended) Lieven J had in fact given permission for them to be named, and subsequently named them herself in her published judgment.  In court, she said she was “not inclined to anonymise the treating clinicians” and was “very unconvinced” that this was necessary (quoted from my contemporaneous notes on 27th January 2021). In the words of counsel for Sharon Bourn,  “the intention of the judge was that the clinicians should be named, and that the hospital should be named”.  However, a mistake was made (for which counsel took responsibility): the Transparency Order was not amended so as to reflect the judge’s decision.

[3] The url links inserted into quotations are mine and do not appear in the original documents.

[4] The judge could also reasonably have pointed out (but did not) that varying the Transparency Order to permit publication of the name of Robert Bourn and his family as requested by the BBC would mean that not just the BBC but anyone else who’d observed the hearings could now refer to the family by name – including (obviously) me. 

[5] On Alfie Evans: “….we cannot conclude this judgment without recording our dismay and concern at what we have been told have been the consequences of what has taken place at the hospital in recent days. These matters have not been the subject of any court determination. However, if true they are alarming. We were told that some members of the hospital staff could not get to the hospital because of road blockages; that staff, patients and family members were upset and frightened by what was taking place; that a group supporting the parents went into the Paediatric Intensive Care Unit to the concern of staff. If these events have taken place it is not difficult to see how they would impact negatively on the treatment being provided to patients at the hospital” (from §66 Alfie Evans judgment in the Court of Appeal)

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