So...Dr Weir testified today, as you all know already. First, some of you might have seen my brief cameo on camera--and how I was severely admonished by the coroner. Willy came with Jenny Wilson, a patient who lives in a village near Exeter. During the brief morning break, Jenny asked me if I could get coffee for her and Willy. There's a cafe in the building next door, so of course I agreed. But the hearing had already re-started when i got back, so I tried to quietly walk down from the back, where the reporters sit, to the front, where Jenny and Willy were. When I put the two cups of coffee in front of Jenny, the coroner glared at me and said, "This is completely unacceptable."
I mumbled an apology and slunk back to my seat. I figured I was about to be tossed out and barred. Luckily, the moment passed. A bit later, one of the court admin people came up to me and said, nicely, only water is allwoed in the courtroom--no coffee, no food. I apologized again, and they said no problem--they were very nice about it. The two other reporters there--one from The Telegraph, one from The Times, laughed (in good humor) and said, "Hey, you can't bring your American informality into our courts!" or something along those lines. Later we joked about how tomorrow I was going to come in early and leave cups of coffee at everyone's place. In the end, no harm done.
Later I'll post the text of the two letters Willy wrote that were read out in court--one to Dr Prague, one of the consultants involved in Maeve's care, in the spring of 2021, and one to the hospital management a few months later, in September. Much of his testimony focused on his recommendations about tube-feeding, which were not followed, and his concerns about low blood volume, which were also ignored. He argued that they should have done major saline infusions, which he contended could have helped Maeve with her OI so she could have been propped up for at least the period of time needed to tube-feed three times a day. But Dr Prague said her blood pressure was normal, so did not think that she had a low-blood-volume problem--although Willy argued that blood pressure when someone is supine was not sufficient and they should have taken her blood pressure when upright and experiencing OI. He also said there were tests for measuring blood volume that he did not think were available at the hospital.
The lawyer for the NHS trust pointed out that Dr Strain had yielded to the opinions of the gastro and nutrition experts about whether tube-feeding was necessary, and wanted to know if Willy agreed they were the experts in that domain. Willy repeated more than once that their opinion was based on not understanding the complexities of ME/CFS. For example, the feeding experts decided that Maeve was able to swallow. However, per Willy, the issue is not whether swallowing once is physically possible but that chewing and swallowing a meal expended so much energy that people in Maeve's deteriorated state could not tolerate it.
There was a lot more--in the afternoon, two social workers testified about their efforts to assess Maeve's situation in 2021 for social services purposes, including for a safeguarding investigation. There was a lot of discussion of the legal ins and outs of the requirements for these assessments, which was rather challenging to follow without being fully aware of the processes involved.
Tomorrow, we'll learn more about the differences over the tube-feeding issues with the testimony of Dr Roy, one of the hospital consultants involved in those discussions.
