Maeve Boothby O'Neill - articles about her life, death and inquest

Robert 1973 said:
“How has the medical profession enabled a culture where all patients are treated with dignity, compassion and respect – except people with ME/CFS?

Who is responsible? Will they be held to account?

#MaeveInquest”
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off topic for this thread but I disagree the blanket statement that all other patients are treated with dignity, sadly many examples of people with dementia, usually elderly mistreated due to lack of observation of inability to feed themselves etc
 
NelliePledge said:
off topic for this thread but I disagree the blanket statement that all other patients are treated with dignity, sadly many examples of people with dementia, usually elderly mistreated due to lack of observation of inability to feed themselves etc
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Yes, badly worded. The point I was trying to make is that ME/CFS is the only condition I’m aware of in which patients are routinely mistreated because of what medical professionals are taught (or not taught).
 
Robert 1973 said:
Do we know if her PTSD is attributed to the issues surrounding Maeve’s death?
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From Today’s Times report:

“Dr Lucy Shenton, who had been Maeve’s GP for years and was fond of her patient, is so traumatised by her death that she will not give evidence at her landmark inquest, which began on Monday at Exeter county court.

Shenton was due to be the first witness at the inquest, which will examine delays in providing Maeve with palliative care and whether different clinical decisions might have saved her life.

However, coroner Deborah Archer revealed that Shenton was being treated by a clinical psychologist who “felt that the stress and Maeve’s tragic death had taken a very significant toll on her”. She was suffering from post-traumatic stress and to give evidence would likely trigger a mental health breakdown, the inquest was told.

O’Neill told the hearing that Shenton said she had “never seen anyone so poorly treated as Maeve was”. As Maeve’s health rapidly declined, the inquest was told, Shenton’s repeated requests for specialised and co-ordinated help were not realised. Shenton said that “several doctors involved in her care stated they do not believe ME is a medical problem”.”

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Robert 1973 said:
Do we know if her PTSD is attributed to the issues surrounding Maeve’s death?
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Sorry I didn’t reply earlier, I think this has been answered but yes. Up until last week she was prepared to attend the inquest but after requesting and reviewing the GP notes her psychiatric therapist then wrote to the coroner saying that giving evidence in person would trigger a major breakdown.
they could compel her to attend but they didn’t want to be the cause of someone’s health deterioration. They considered at length the benefit of sending questions to her and that might happen but it would be a short list. Mr O’Neill had put forward a list of questions already but the coroner said they were not all suitable to put forward and she would rephrase the other ones.

So the majority of the time today was spent with the GP partner reading out her notes or correspondence.
Maeves GP Dr Shelton was a salaried GP and not one of the partners. All of the Drs at the surgery only work part time so to start with Dr Shelton only did two days a week. It sounded like it increased to four but basically no one did five days a week. She has not been working for them for a while now and is off sick (not sure if that was from their practice or another one)

To be fair Dr Shenton sounded like she did what she could. I think the following days will show that the major failings are further up the chain.

thinking I might not be able to listen to every day all day I contacted them to see if there is a schedule of people giving evidence , but was told they cannot share this externally. thinking I might be able to read transcripts if I miss any time I asked if they would be available but was told no they could not be shared either. Note - this is not what the coroners website says so I might challenge it. But it would be good to know it is possible to read them after the event.
 
Nightsong said:
Article in the Guardian:

https://www.theguardian.com/society...elp-her-get-enough-food-to-live-inquest-hears
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From the article:
Boothby O’Neill died in October 2021. Giving evidence, Shenton’s GP colleague, Dr Paul McDermott, said the surgery did not have specialist knowledge of ME/CFS. He said: “We needed help. We all needed help. Maeve needed help.”

He told the inquest he was “slightly shocked” that Boothby O’Neill was discharged on the same day when she was first admitted. “I was hoping someone would take it on and go into more depth with it. I realised as a GP we had run out of all options. We were sending her in [to hospital] then boom she comes out the same day.”

Asked if there was any training for GPs on ME/CFS, McDermott said: “There may be e-learning, maybe.” He said he had undergone no formal teaching on ME/CFS.

Boothby O’Neill’s family believe the two-week inquest could be a landmark case highlighting shortcomings in the medical profession’s approach to ME/CFS.
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I know it's not good to make comments on a brief excerpt of what someone said, but I think that reported testimony sums up a lot of what is wrong with doctors' approach to ME/CFS. First, thinking that specialist knowledge of ME/CFS was needed to make a difference. As Jonathan Edwards pointed out in his paper on treating nutritional difficulties in severe ME/CFS, specialist knowledge is not needed to help. In fact it is incorrect "specialist knowledge", usually the BPS paradigm, that damages.

Second, while I appreciate that McDermott is giving testimony at the inquest, I find it amazing that he does not know if there is e-learning about ME/CFS. His colleague has been deeply traumatised, the patient who entrusted her medical care and, as it turned out, her life to his practice died a horrible death with suffering over many months. McDermott has had to front up to an inquest and give evidence. His practice almost certainly has other patients with ME/CFS. Surely, at some point along the way of all that, most professional people would try to find some information, either to help or later at least to understand the situation and be able to contribute better at the inquest? But, this doctor reportedly doesn't even know if there is e-learning. All it takes to find out is a brief bit of googling and a half an hour to do the CPD unit. (Yes, most e-learning leaves plenty to be desired, but still.) If the experience McDermott has had is not motivation to seek out a good CPD unit on ME/CFS, I don't know what would be. I really cannot understand it.
 
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Hutan said:
From the article:

I know it's not good to make comments on a brief excerpt of what someone said, but I think that reported testimony sums up a lot of what is wrong with doctors' approach to ME/CFS. First, thinking that specialist help was needed to make a difference. As Jonathan Edwards pointed out in his paper on treating nutritional difficulties in severe ME/CFS, specialist knowledge is not needed to help. In fact it is the incorrect "specialist knowledge", usually the BPS paradigm, that damages.

Second, while I appreciate that McDermott is giving testimony at the inquest, I find it amazing that he does not know if there is e-learning about ME/CFS. His colleague has been deeply traumatised, the patient who entrusted her medical care and, as it turned out, her life to his practice died a horrible death with suffering over many months. McDermott has had to front up to an inquest and give evidence. His practice almost certainly has other patients with ME/CFS. Surely, at some point along the way of all that, most professional people would try to find some information, either to help or later at least to understand the situation and be able to contribute better at the inquest? But, this doctor reportedly doesn't even know if there is e-learning. All it takes to find out is a brief bit of googling and a half an hour to do the CPD unit. (Yes, most e-learning leaves plenty to be desired, but still.) If the experience McDermott has had is not motivation to seek out a good CPD unit on ME/CFS, I don't know what would be. I really cannot understand it.
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And that’s the key all the way through, isn’t it? Wouldn’t you read up? The hospital staff, didn’t they read up? The dietician? If you’re contacted by Charles Shepherd, from a Major ME charity, don’t you read up?
 
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MrMagoo said:
And that’s the key all the way through, isn’t it? Wouldn’t you read up? The hospital staff, didn’t they read up? The dietician? If you’re contacted by Charles Shepherd, from a Major ME charity, don’t you read up?
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Why would I need to read up? It's not my area.

Obviously objectively wrong but seems to be the prevailing perception
 
There were about half a dozen journalists there today. I'm glad to see these pieces appear--they pretty much capture what happened today. The sound in the courtroom is pretty bad for someone with hearing issues. Even with my hearing aids ramped up, it was very hard to make out full sentences and quotes. Today the coroner had McDermott and others read documents out loud as a way of getting them in the public record. Even with my hearing issues, a lot came through--the heartbreaking notes from the GP, who left practice because of the trauma; the obvious confusion and lack of understanding at the surgery and hospital of what to do and how to address the issues; the efforts by some even within the last couple of months to question whether Maeve might have had a psychiatric problem, etc.

The coroner seemed to have an idea of what she was trying to do in getting all this stuff on the record. Tomorrow I'll listen online with my earbuds while in the courtroom--hopefully that will be better.
 
A Daily Mail piece today quotes from a message written by Maeve. I am pasting it here so I know where to find it.

"She had also completed an advanced decisions document about her future treatment if she was unable to communicate her wishes.

In it she wrote: 'I wish to remain at home and be cared for at home in the community. ME/CFS is a diagnosis by elimination, and I have had every test possible all of which, except one, proved negative.

'The positive test was for mitochondrial function in blood (2016). The only recommended and reliable treatment for ME/CFS is complete rest remaining below my anaerobic threshold and pacing every activity.

'I do not seem to have been able to do this despite spending all my time horizontal since January 2021.

'I agree to admission to hospital for treatment only if there are clearly and fully considered reasons ie. hydration and nutrition.

'When I am in hospital, please enable these medications, supplements and dietary needs.

'I have been unable to eat solid food since March 19 2021 having lost the ability to chew.' "
 
NelliePledge said:
I don’t know if any use for you @dave30th but the court should in theory be able to provide a hearing loop to make it easier for people who have hearing aids.
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Thanks! Yes, they told me that. Unfortunately, the loop technology isn't used much in the US, so my hearing aids do not have that softwware program option to allow me to hook into that sound. Many more venues in UK and Europe apparently have the loop technology than in US.
 
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