By Celia Kitzinger, 23rd August 2022
A woman in her 30s has been in hospital for more than three months – for the last four days in the High Dependency Unit, where she is intubated and mechanically ventilated. She has “a hugely complicated medical background”, including a rare inherited disease, and a diagnosis of “autistic spectrum disorder”.
According to the introductory summary helpfully provided by Emma Sutton of Serjeants’ Inn Chambers, who represents the applicant Health Board (Betsi Cadwaladr University Health Board), she has “at least 19 different physical conditions”. The mother said there were far more.
In addition to intubation and ventilation, she is receiving treatment for an acute kidney injury and sepsis.
She is also being given Valproate (described in court as an anti-mania medication).
The case (COP 1397774T) was before Mr Justice Stephen Cobb on 18th August 2022. It had been agreed from the outset that no substantive decisions would be made at this hearing and another hearing a few weeks later was planned.
The time spent at the hearing on 18th August 2022 was to make an interim order that the current treatment plan was in the patient’s best interests. Various preliminary issues were also attended to, including disclosure to the Official Solicitor of the patient’s medical records, witness evidence from the parties, and a roundtable meeting to determine whether there are disagreements between the family and the Health Board regarding the patient’s medical care and treatment, and if so what those are.
The woman at the centre of the case (the first respondent) was represented, via her litigation friend the Official Solicitor, by Vikram Sachdeva QC of 39 Essex Chambers.
Her parents (who were joined as parties as the second and third respondents) were in court as litigants in person. They appeared together on the same computer screen. Both are medically trained: her father as a consultant and her mother as an ITU nurse (both I think now retired).
By the time of the hearing, the Health Board’s application to continue to provide the patient with life-sustaining medical treatments was not opposed by any of the parties.
As counsel said, there is “clearly some potential for dispute over what treatment the patient gets…. But it is not clear at this stage what the specific disputes are”[i].
It was obvious at the hearing that the parents do not believe their daughter is getting the right care, and that they don’t think the hospital she is in is capable of providing it.
Both parents expressed concerns about her care – including (said her father) “some of the treatment acutely at the moment, and historically since she was admitted”. This included an alleged ketamine overdose. The father referred, diplomatically, to a “suggested ketamine overdose” and was challenged by the mother: “it’s not suggested – it’s a fact”. Mr Justice Cobb made clear that “it’s not a finding of the court, and unless or until it is, I suppose it’s ‘suggested’”.
Father: There’s an urgent need to address those things, as she’s clearly not improving. There are limitations in the place where she is to provide the care that she needs. Prior to her deteriorating, she was very well-read about her condition, including peer-reviewed research, and had strong views. And what we have done since her capacity was lost…
Mother: (interrupts) Was taken from her.
Father: … is to echo the views she expressed. Her capacity returned on Friday, but we were not able to get the Health Board to review her capacity and clinical deterioration since means she has lost capacity again. She expressed the view that she wanted to leave the hospital. We explained to her the seriousness of her condition and she-
Mother (interrupts): She said, “oh well, I can’t go home at the moment then, but I want to go somewhere else”.
Judge: Was this said with someone else there?
Mother: Yes, [Name] was there. They don’t use surnames but she’s a health worker who has been there a lot.
The parents’ view is that their daughter should move to a new hospital, and they are concerned about waiting more than three weeks for the next hearing.
Mother: I just need to say one thing.
Judge: Why don’t you say it now.
Mother: Her CRP [C-Reactive Protein] which is evidence of infection, has been rising nonstop and is now up to 189 which is incredibly high. She may not be alive by Tuesday. [..]
Father: We are concerned- While respecting the need for due process, we are concerned that events could overtake us.
The judge explained that if there’s a deterioration in their daughter’s condition it would be open to the parties to come back to court to seek further orders in an urgent hearing – the court is open 24 hours a day and an out-of-hours court hearing could take place.
The mother was shaking her head displaying (it seemed to me) her view of the unacceptability of this arrangement.
The father asked “How would we be able to raise that concern? We need to understand the mechanism?”
Before the judge had a chance to respond the mother intervened. She said: “They don’t understand. They have no concern. They are treating her as if this is all psychiatric. They have not tried to educate themselves in any way, shape or form about her [underlying diagnosis]. They’ve tried to cover up all their mistakes and lie about it. I’m sorry, but that’s the truth. [My daughter] is not safe there. She never will be safe there. I am fearful for my daughter’s life”.
The judge did not engage with the mother at this point, but returned to the father’s question about how to get an earlier hearing if it was needed. The procedure he recommended was to indicate to the Health Board and the Official Solicitor that the case needs to come back to court, and if they don’t move quickly enough to use the Out of Hours Service. As he was speaking, the mother became increasingly agitated.
“There is no justice. I’m sorry. But carry on. Do whatever you need to. Just carry on. I’m not taking part in this. You just listen to the doctors because they are doctors. I’m sorry, I’ve had enough”. She stood up and was no longer visible onscreen, although we could hear her shouting (I think to her husband) for the next few minutes, until he turned off the audio. Later she was on screen again, and obviously very distressed and crying, shaking her head in apparent disbelief at what was going on.
If it returns to court, this is likely to be a complicated and contentious case. The (so far largely unarticulated) dispute between the family and the hospital seems to be at the heart of this case.
The PA journalist, Brian Farmer – the only other observer – has published his own account of this hearing, drawing attention to the fact that the Betsi Cadwaladr University Health Board has already been roundly criticised by another Court of Protection judge in a different case: see“Retired nurse tells judge her daughter ‘is not safe’ in hospital”. The earlier judicial criticism to which the journalist refers is in this judgment: PH v Betsi Cadwaladr University Health Board  EWCOP 16.
The next hearing in this case took place on 14th September 2022 in the Royal Courts of Justice in person. Journalist Brian Farmer observed the hearing and wrote this report.
“Judge criticises consultant concerned about how doctors are treating his daughter at Welsh health board“
Brian Farmer’s report includes the names of the parents, their daughter and the name of the Health board because Brian Farmer made an application to vary the Transparency Order to permit this. We will cover the issue of transparency as it applied in this case in another blog post.
You might like to read more about the woman at the centre of this case, Laura Wareham, and her advocacy for people with Ehlers-Danlos syndrome.
Rotherham woman with rare condition steps up ‘life changing’ surgery campaign
Woman who dislocates her shoulder every night says Nottingham doctors ‘saved her life’
Celia Kitzinger is co-director (with Gill Loomes-Quinn of the Open Justice Court of Protection Project. She tweets @kitzingercelia
[i] Quotations from the hearing are as accurate as I can make them, given that we are not allowed to audio-record hearings. They are taken from contemporaneous touch-typed notes and they are unlikely to be completely verbatim.
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