Woman with Severe ME Left to Starve to Death in NHS Hospital

[Countrygirl]

https://www.meaction.net/2023/02/22/starvinginnhshospital


Sami Berry with severe ME left to starve to death by NHS Hospital

It shouldn’t be possible to die of starvation in an NHS hospital, but that is exactly what will happen without immediate intervention for a woman in the UK who is at this moment fighting for her life in an NHS Hospital. Multiple failures by the medical system have brought her to this point.

Sami Berry is no stranger to illness or hospitals. Her initial experience came as an employee of the NHS and then as a patient living with multiple debilitating illnesses including epilepsy, Ehlers-Danlos Syndrome (EDS), and severe myalgic encephalomyelitis (ME).

Sami is very concerned she is going into intestinal failure and is at immediate risk of joining those with severe ME and complex chronic illness who have died under the negligence of the NHS. Maeve Boothby O'Neill, Merryn Crofts, and Sophia Mirza are three recent examples.

Sami desperately needs immediate intervention from a specialist who understands her complex chronic conditions. She cannot continue as she is and she is not getting the help she needs now.

The complex chronic illness communities have mourned too many losses. We will not stand for one more. The NHS should and can do better.

*MEAction has been in contact with Sami and her family to ensure we are up-to-date on her care. Late last week, #MEAction sent out a press release to help apply pressure on the hospital to get her the care she deserves. We have received interest from a few major press outlets and we are hopeful this will help to bring about the attention and care that Sami so deserves. Help us demand Sami get life-saving care by sharing this article on social media and with UK press.

 

[*GG*]

Sad https://www.zerohedge.com/medical/overburdened-nhs-pushes-more-brits-go-private

 

[YippeeKi YOW !!]

@Countrygirl
You are such a remarkable and shining beacon .... I know that compliments and stroking mean absolutely nothing to you but I felt the need to say this ....

I'm not active on Facebook or any other social media, so unlike with Eva, I cant be much help here. Not that I was that much help there, but at least I was in a position to do something ....

 

[BrightCandle]

And all too common result in the NHS. Has the usual hallmarks with a consultant ignoring the advice of an ME/CFS expert as they always do. Many people have died this way already I surely hope the light shining will improve the care she receives.

 

[lenora]

Why not get a lawyer involved? It seems to be the only way to move things forward....like it or not. Lenora

 

[lenora]

We owe tremendous thanks to Jennifer Brea who has brought this illness into the light far more than anyone in the past 35 years (at least). Her film and then her Ted Talk(s) have enlightened many to this illness. It has given families something to show their loved ones from someone who 'is there.'

Many of us have done our share to get across the serious nature of this illness....even before the internet, we tried. So many suffer and yet we must always remember that they, too, are human beings.

The odd thing is that unless someone is in the worst stage, we're healthy looking. Like Jennifer, we even look beautiful and while our brains don't function as they once did, we're able to be well spoken. This is all very good, but it then leads to us not being taken seriously by the medical community. It's a conundrum, to be sure.

Thank-you Jennifer, and professionals at Stanford and so many more researchers who are working on this problem. We appreciate you and wish you luck.

Become part of trials of whatever is needed, many of us have and no, it isn't always easy. However, we've tried and in many cases new drugs or treatments have been discovered. True, they aren't going to help everyone....but we're not selfish, we just do our best. Lenora

 

[Anchoress]

I was misdiagnosed for thirty years in the UK as being mentally ill or tha dreadful phrase " personality disorder". In and out of mental hospitals and some dire "treatment". Finally. a referral to a big general hospital with a respected consultant... and three weeks later..." She was never mentally ill; it was always M.E "was added to my notes by a locum GP where I lived. And it was then I left the UK as I knew the set up well enough that most drs will never admit to error. And the error had gone on 30 years and robbed me of all I had and was. Needed and got (!) a new start as, as I checked before I moved, here they CANNOT access my previous medical notes without my written permission. And as I manage the M.E , was already retired and am very self sufficient... Only in accident eg a fall that led to a smashed wrist ( that Xray! OH MY!) and any serious illlness did i "Bother the doctor. " as they used to say in England. .

 

[Anchoress]

And all too common result in the NHS. Has the usual hallmarks with a consultant ignoring the advice of an ME/CFS expert as they always do. Many people have died this way already I surely hope the light shining will improve the care she receives.

Twice in the UK in my frequent hospital stays I have intervened when nurses just put the patient;s meal on the locker and rushed away never to return.
Got out of bed and fed the person a spoonful at a time.
This was way before we had ever heard of M.E.
I mean REALLY!

 

[Anchoress]

What I am trying to say is that WE can actively support folk left in these situations, WE can take food in and literally feed those we know are in danger while tackling the wider issues. Been there done that literally and the fact that someone HAS involved helps clear the log jam. Oh and that was in the UK where family often take food in for their families.

 

[lenora]

HI Anchoress....I believe the problem is more than feeding a person a spoonful at a time. These people are on (or need) tube feeding and it isn't being done.

I would like to ask what the NHS is supposed to provide in a life-saving situation like these? There are far too many for them to be isolated cases.

Yes, we would all agree that they'd be better off at home IF they could get a tube put in and have access to the feedings they need. Exactly what does the law say? Where are the surgeons who could insert the tube and why isn't it being done?

It sounds to me like it's more than a case here and there. Who is making the decisions? Are these people assumed to be eating disorders in the last stage of the illness? None of it makes sense the way it's presented. This is terrible for the patient and the family to go through. Answers? Yours, Lenora

 

[Anchoress]

HI Anchoress....I believe the problem is more than feeding a person a spoonful at a time. These people are on (or need) tube feeding and it isn't being done.

I would like to ask what the NHS is supposed to provide in a life-saving situation like these? There are far too many for them to be isolated cases.

Yes, we would all agree that they'd be better off at home IF they could get a tube put in and have access to the feedings they need. Exactly what does the law say? Where are the surgeons who could insert the tube and why isn't it being done?

It sounds to me like it's more than a case here and there. Who is making the decisions? Are these people assumed to be eating disorders in the last stage of the illness? None of it makes sense the way it's presented. This is terrible for the patient and the family to go through. Answers? Yours, Lenora

You are making an accusation of widespread bad and unprofessional treatment.
We do not know.
I have found that with illnesses for which there is no actual test, health care professionals are at a loss. Their entire training is based on test results, proof.
I mentioned the time I was in hospital here in Ireland needing minor surgery. All went wel until I mentioned ME! And another time when I was registering with a Gp she stopped writing when I said the dreaded word ME then carried on until suddenly light dawned.." Oh you mean Chroinc Fatigue."
I saw this in the UK BUT then was properly diagnosed .. And it is widespread world wide? See it here.
That collapse I had a few weeks ago? I was summarily discharged and never told anything re what had happened. I am not about to ask.... It takes far too much strength to do so.

and I will continue to help any patient as I have done in the past and not question what I cannot change, In either illness or care. That is my job!
See thee later... not well today and as soon as the groceries arrive. closing down

 

[Countrygirl]

[QUOTE="Anchoress, post: 2427471, member: 40605"

]You are making an unjustifiable accusation of widespread bad and unprofessional treatment.
We do not know.

I am afraid we do know. @Anchoress

There IS widespread 'wilful medical ignorance', abuse, and (very) unprofessional treatment of ME patients and it continues. I have hundreds of case histories on file to prove it.

 

[lenora]

@Countrygirl....do you have any young men in precarious positions? I'm wondering if these young women are though to have anorexia and it's assumed they're in the latest stages of the illness.

My youngest daughter had it....and I can imagine how absolutely terrified the parents must be, even though we're talking about two separate illnesses. Still, I wonder how much of it is assumed to be the wrong diagnosis?

I don't mean to burden you with even more, but if you have files of information perhaps you already know the answer about males. Very sad....the whole affair. Yours, Lenora