The Times: Sean O'Neill: My daughter couldn’t be saved but there’s hope for other ME patients

Countrygirl

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Sean O'Neill, health journalist for The Times, describes the death of his 27-year-old daughter from severe ME after the Royal Devon and Exeter Hospital, notorious for their unkind and unprofessional treatment of ME patients, refused to fit an NG tube, despite the CEO being warned by an ME specialist and consultant via email that she would die if she wasn't treated appropriately. The CEO never responded and Maeve died three weeks later.


https://www.thetimes.co.uk/article/...RotX0O-0yuFLJiRPLUVXkLUX70f6o1ssjFKyy21zbsIgQ

My daughter couldn’t be saved but there’s hope for other ME patients

Sean O’Neill
Friday May 13 2022, 12.00pm, The Times
Health

Sean O’Neill and his daughter Maeve on their trip to New York in 2010

The announcement of an action plan for tackling myalgic encephalomyelitis is a genuine breakthrough. Sajid Javid and his team have set Britain on the path to become the world leader in confronting this cruel, misunderstood and neglected disease.
For me it is the most bitter of bittersweet moments.
In the early hours of October 3 last year, my eldest daughter, Maeve, died aged 27 from ME.

This intelligent, creative, courageous young woman lived half her life with a truly awful disease. Bit by bit, ME stole away her youth, her promise and her independence.
She struggled not just with the debilitating, disabling effects of ME but also with the disbelief, apathy and stigma of the medical profession, the NHS and wider society.
Maeve endured three gruelling admissions last year at the Royal Devon and Exeter Hospital and there are many, many questions about how that institution approached her illness.
There are questions about the attitude towards someone diagnosed with ME, about the treatment offered and those that were denied. Mostly I question whether, if she had arrived at that hospital with the same acute symptoms but a diagnosis other than ME, the medical staff would have treated her differently.

I hope at least some of my questions will be answered by an inquest into Maeve’s death to be held later this summer.
I believe Maeve (like many people with this illness) suffered discrimination because there is a deeply embedded prejudice about the disease which permeates all levels of medicine and beyond.
In March last year she and I were both in hospital around the same time. I was having state-of-the-art keyhole surgery to remove cancer cells from my abdomen. My treatment was swift, skilful and effective. By contrast Maeve presented as acutely ill — extremely weak, in pain, unable to digest food and in danger of malnutrition — at the Royal Devon and Exeter Hospital only to be told there was nothing that could be done for her.

Within hours of that admission, she was bundled back into an ambulance and sent home. Her mother was told to “prepare for the worst”.
Maeve later texted to say the doctor “has his head so far up his own arse they should cut it off and leave it there”.
 
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bertiedog

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"Sajid Javid and his team have set Britain on the path to become the world leader in confronting this cruel, misunderstood and neglected disease."

Excuse me for being cynical but is this just another example of a member of this populist Government spouting words that sound great but after a period of time we find that nothing has changed or infact things get worse which is what has happened to so many of the grandiose statements that have come from various members of the current Government.

I really hope I am wrong and I will be only too happy to admit this but the state of the NHS in the UK plus the lack of any treatment for ME in this country is appalling as the very sad story of Sean's daughter has illustrated.

Pam
 

splusholia

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"Sajid Javid and his team have set Britain on the path to become the world leader in confronting this cruel, misunderstood and neglected disease."

Excuse me for being cynical but is this just another example of a member of this populist Government spouting words that sound great but after a period of time we find that nothing has changed or infact things get worse which is what has happened to so many of the grandiose statements that have come from various members of the current Government.

I really hope I am wrong and I will be only too happy to admit this but the state of the NHS in the UK plus the lack of any treatment for ME in this country is appalling as the very sad story of Sean's daughter has illustrated.

Pam
I believe Javid’s family member has suffered from M.E., thus perhaps his words are not totally hollow.
 

Countrygirl

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https://www.thetimes.co.uk/article/...gcz4YNpwekAL7zaePnRAHxHduJmBwRc8jY2Hst8VoVUb8 Relative’s suffering triggered Sajid Javid’s ME crusade

Sean O’Neill
Saturday May 14 2022, 12.01am, The Times
Sajid Javid

The health secretary is expected to speak later this month at the launch of a report entitled Rethinking ME
DAN KITWOOD/GETTY IMAGES

Sajid Javid’s radical new approach to the debilitating condition myalgic encephalomyelitis was shaped by his experience with a family member.
The health secretary told The Times yesterday that a close relative suffered with ME, which affects at least 250,000 people in the UK and for which there is no diagnostic test, universally effective treatments or cure.
“ME affects the lives of children and adults across the country and I know from my own family’s experience that fluctuating symptoms can make it incredibly difficult to take part in everyday activities, enjoy time with friends and loved ones, access services and go to work or school,” Javid said.
“Not enough is known [about ME] and without better understanding those living with the condition miss out on vital treatment and support. I am determined that we lead the way in this area.” Javid said that the first step would be a round table with experts, and later this year the health department would “develop a cross-government plan for ME in England, laying out how we will improve experiences and outcomes”.

The new direction was laid out in a ministerial statement to parliament yesterday. It was the first time that a senior minister had made a policy announcement about ME, which is also known as chronic fatigue syndrome.
 

lenora

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Hello Everyone....I was diagnosed with this illness (and other neurological illnesses), some of which were surgically helped....during the beginning of the AIDS crisis in America. We had no way of contacting each other except by telephone and the occasional newsletter in those very early years. I was just fortunate that I had an explanation for what was happening....and had been happening for many years prior to the diagnosis.

The AIDS crisis demanded immediate attention (and I had no problem with that...people were dying very fast and no one knew the cause). MS was still an illness instead of a disease....I expected info from both of these immune/nerve problems to filter down to us....but it never did.

In the meantime the MRI became available in the U.S. I have been a founding member of a few organizations over the years, both before and after computers. We were placed by the wayside, especially with the term "Yuppie Flu" and an article done by Newsweek or Time (can't remember which). People in Canada were in even worse shape.

B/c we had MRI's available, many Canadians came here and paid for diagnoses....certain doctors and Institutes provided help, but remember that such help may change over the years as doctor retire, etc.

I lived in Canada at one time, Toronto & Saskatchewan to be exact, also know the UK very well and have been involved in the NHS and what it offers (personal experience).

OK....Canada was behind us in the beginning. No question of that. Today, all these years later, I'd say they're on the same footing if not ahead of us with diagnosis and treatment of the illness (which has enough symptoms to keep multiple doctors occupied fulltime). The UK may be facing an improvement now....I do know that it has improved over the years, although you were far more targeted with psychiatric conditions than we were in the U.S. (Although we were hardly taken seriously...trust me.)

When I began, there was nothing for pain....just an old anti-depressant called elavil which worked in some, but did nothing for others. Little by little other drugs have been developed, the internet blew our world into what it is today and information (probably too much) is readily available today.

In spite of my age and multiple illnesses, I do stay well informed with non-stop reading. I recently finished books on Purdue and the fentanyl crisis....I don't have severe cognitive difficulties, although I had some after my heart attack. Point being: Changes are slow to come, they take a lot of money for research, proper diagnosis (I believe that many people are diagnosed with ME and it's something else entirely, with symptoms that may be the same).

It's a long, hard, confusing and painful journey....frustrating, to say the least. The symptoms include so many and often wax and wane over time.

My heart goes out to the family that was mentioned above. The young girl should have been given a feeding tube.....but that's little comfort for her family. Here, lawyers would be hired and the hospital would be held somewhat accountable.

The UK is up against many things at the moment, a shortage of good doctors....it's a wonderful system for births, setting broken bones, even home care....but perhaps it isn't even that good in many rural areas. I know that hospitals are closing, we're having the same problem here and medical care is often lacking in areas without medical centers. COVID has left all nations once again fighting the unknown, and now we have the Ukrainian situation in addition.

I know that researchers here are working much harder on problems of the immune system. Watch out for pesticides, think of places you've lived where problems like mold, mildew and things like asbestos, lead paint and even DDT may have been used. Yes, many cases of this are noticed after viruses, but even one virus alone is not going to be the overall cause.

I do believe that people in the UK will join those in Canada who can provide good support and knowledge of which treatments work best for them. I also know the frustration of waiting for such a system. None of this will happen overnight....and this has been around many times in the past two centuries (think of post-polio even). You're closer today than you think. Money is needed for research....give even one pound/mo. for research, more if you can afford it. Organizations need money, but research is the first stop for all of us. It's way too late for me, I felt needed and wanted, and yes my life had totally changed, as well as that of my family.....but I did something very constructive for all, and I'm so glad I did.

Help those in rural areas....these are the things needed today, research and yes, drugs will come and go and we're going to be the guinea pigs as much as we've always been. It's not easy, but you can do it. Yours, Lenora.
 
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Zebra

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By contrast Maeve presented as acutely ill — extremely weak, in pain, unable to digest food and in danger of malnutrition — at the Royal Devon and Exeter Hospital only to be told there was nothing that could be done for her.

Within hours of that admission, she was bundled back into an ambulance and sent home. Her mother was told to “prepare for the worst”.
I found this jump between, "there's nothing that could be done for her" to telling her mother to "prepare for the worst" mind boggling.

What was their logic here?

How can someone NOT be sick enough to need in-patient medical care, then SO sick they might die? Do they realize how that makes no sense?

Regardless of the underlying disease process, how is this hospital not obligated to provide palliative care?

Unless someone has an Advanced Healthcare Directive stating otherwise, providing hydration, nutrition, and pain relief should be the standard of care, even if it's only until the patient is stable enough to be discharged home or transferred to a longer-term care facility.

I really feel for this father. If I were in his shoes I would be so consumed with RAGE against this hospital, it would delay my grieving process.

I am so furious about the needless suffering and death the NHS seems to inflict upon anyone that has "ME/CFS" in their medical record.

End of rant.
 
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I found this jump between, "there's nothing that could be done for her" to telling her mother to "prepare for the worst" mind boggling.
Yes @Zebra it's hard to get your head around the crazy attitude that some in our NHS have. If I was the father of a child who had been neglected in this way I would complain to the cops. Dont expect they would do anything but maybe they would.
 

Revel

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I found this jump between, "there's nothing that could be done for her" to telling her mother to "prepare for the worst" mind boggling.
Not surprised, similar happened to me.

Admitted to hospital severely malnourished and weak. In the absence of any bloodwork abnormalities/visible physical symptoms, the doctors were of the opinion that I was deliberately starving myself. Parents were told I wouldn't last the week and that my internal organs were on the verge of giving up. . . and yet, no palliative care was put in place, no feeding tube. Nothing.

It was as though it was my choice to be this way and they were not interested in preserving my life if I had no desire to help myself.

I was lucky and slowly improved without such treatment (probably a combination of my young age and the months of complete bedrest in the hospital).

Unfortunately this medically unaided recovery only served to confirm the doctor's initial diagnosis and my case was assigned to a psychiatrist for the remainder of my hospital stay to deal with my apparent "eating disorder" (complete waste of my time and precious energy).

In similar fashion, I saw numerous cardiologists and GI consultants prior to my ME/POTS diagnosis, all of them suggested there was nothing physically wrong and that l had "anxiety", "depression", "hypochondria" (take your pick). However, not one, when reporting back to my GP, chose to repeat what they told me to my face, nor recommended I be referred to mental health services.

Either they were not confident of their erroneous conclusion, or they simply didn't care if I received any kind of treatment to improve my QOL or not. I suspect the latter.