COVID and its consequences on disabled/sick people's care

[Cheshire]

The Pandemic’s Hidden Victims: Sick or Dying, but Not From the Virus

As the coronavirus overwhelms the health care system, people with other illnesses struggle to find treatment.

Maria Kefalas considers her husband, Patrick Carr, a forgotten victim of the coronavirus.

In January, Mr. Carr, a sociology professor at Rutgers University, suffered a relapse of the blood cancer that he has had for eight years. Once again, he required chemotherapy to try to bring the disease, multiple myeloma, under control.

But this time, as the coronavirus began raging through Philadelphia, blood supplies were rationed and he couldn’t get enough of the transfusions needed to alleviate his anemia and allow chemo to begin. Clinic visits were canceled even as his condition worsened.

https://www.nytimes.com/2020/04/20/...tion=click&module=Top Stories&pgtype=Homepage

 

[Invisible Woman]

A relative of my husband is in a care home in the Republic of Ireland. The care home is covid free but no visitors have been allowed for weeks. Most of the inhabitants have dementia and apparently all of them have become markedly worse since the lockdown.

 

[Trish]

The care home is covid free but no visitors have been allowed for weeks.

Surely that's the point. The visitors are kept away to stop them bringing Covid into the care home and killing many of the residents and possibly some of the staff.

 

[Invisible Woman]

Surely that's the point. The visitors are kept away to stop them bringing Covid into the care home and killing many of the residents and possibly some of the staff.

Absolutely. That's the whole point to keep them free of the virus. Unfortunately, the lack of contact with loved ones, the little outings and some of their organised activities has meant a sudden marked deterioration in their dementia.

Then for those who do still have some days or times when they are "with it" their loved ones are missing that time. With the more rapid deterioration during lockdown their condition may well have progressed beyond that stage by the time lockdown is over.

Not suggesting that they should let people in. Just saying this is another aspect of loss and suffering of the pandemic.

 

[Trish]

So try I misunderstood your point @Invisible Woman. I agree it's very difficult for all concerned.

 

[Sly Saint]

One of my best friends father is in a care home in the UK which is on lock-down. He recently lost his wife to dementia. As he is deaf, his children are unable to even phone him. My parents both died a long time ago, and I have known my friends Dad and family since I was a child, so I got his address and wrote him a letter and sent an easter card. A small gesture but, hopefully, appreciated.

 

[Invisible Woman]

So try I misunderstood your point @Invisible Woman. I agree it's very difficult for all concerned.

No worries. I'm struggling with communication at the minute so I am sure I could have been clearer.

Another consequence for me is that old friends who are busy with travelling, careers, kids and so now have more time on their hands and are getting in touch. Lovely, but the more I communicate the harder it is.

Very hard to be clear and/or brief!

 

[Cheshire]

Why Psychiatric Wards Are Uniquely Vulnerable to the Coronavirus

The hospital’s administration, B. told me, was not permitting doctors to wear their own N95 masks or other protective equipment, even though the hospital had little equipment to issue. Nor were doctors able to test or isolate patients with suspected cases of COVID-19. Psychiatrists, B. told me, were still being required to appear for in-person consultations, when remote communication would have been possible and safer. There was no way and no real effort to enforce physical distancing, B. told me. Patients could be isolated only once they were symptomatic and had tested positive, but patients with whom they had been in contact continued to intermingle on the ward.

https://www.newyorker.com/news/news...m_brand=the-new-yorker&utm_social-type=earned

 

[Cheshire]

I don't like the term phobia, it's as if the problem was wit te patients, not the situation. A justified fear should not e called a phobia IMO.

‘Where are all our patients?’: Covid phobia is keeping people with serious heart symptoms away from ERs

A survey of nine major hospitals earlier this month showed the number of severe heart attacks being treated in U.S hospitals had dropped by nearly 40% since the novel coronavirus took hold in March, leaving cardiologists worried about a second wave of deaths caused indirectly by Covid-19: patients so afraid to enter hospitals that they are dying at home or waiting so long to seek care that they’re going to suffer massive damage to their hearts or brains. Some call it “a virus of fear.”

“The whole community is discussing this, asking where are all of our patients?” said Martha Gulati, chief of cardiology at the University of Arizona. “There’s nothing we’ve done overnight that has cured heart disease.”

https://www.statnews.com/2020/04/23/coronavirus-phobia-keeping-heart-patients-away-from-er/

 

[Invisible Woman]

A survey of nine major hospitals earlier this month showed the number of severe heart attacks being treated in U.S hospitals had dropped by nearly 40% since the novel coronavirus took hold in March, leaving cardiologists worried about a second wave of deaths caused indirectly by Covid-19: patients so afraid to enter hospitals that they are dying at home or waiting so long to seek care that they’re going to suffer massive damage to their hearts or brains. Some call it “a virus of fear.”

But how many patients attending the ER having heart attacks, actually realize they are having heart attacks? I know of one person who routinely suffered severe indigestion and heartburn. They simply thought their digestive issues had gotten worse when they were actually experiencing a series of small heart attacks. Until the massive one that literally dropped them in they're tracks. They had no idea they had a heart problem.

So, I suspect that many people who are experiencing discomfort who might have gone to the ER "just in case" prior to the pandemic are simply doing what they think have been told to do - staying away.

Which goes to show that fewer people than BPSers or their proponents think have health anxiety. Most people assume it's nothing serious and will follow the recommended advice which up to now is to get checked "just in case".

In the usual heads we win, tails you lose situation no matter what people do, some people will always accuse patients of inappropriate "anxiety".

 

[Leila]

A number of posts about quarantining, especially about how it might affect people with ME, have been moved from the Worldwide spread and control thread.

And this is also why having quarantine facilities away from home is also important.







But in the UK, and most other countries, home isolation is the first (or only) resort.

Edit: actually, other than China, does anyone know which other countries actually did have isolation facilities outside of the home (for “milder” cases)?

I get why it's necessary to separate the infected from the not infected household members.

The idea of taking people away from their families, probably against their will, gives me a very eerie feeling though.

With ME it would be an absolute nightmare.

 

[lunarainbows]

I get why it's necessary to separate the infected from the not infected household members.

The idea of taking people away from their families, probably against their will, gives me a very eery feeling though.

With ME it would be an absolute nightmare.

I think for the general population it should be done, and as pointed out earlier in the thread, it is normal practice for infectious diseases. But in the case of ME and other conditions (eg ASD?), other neurological & physical conditions etc, or learning disabilities, I can see there would be so many issues of being away from home, and it could cause a lot of distress and worsened health for the person involved. And how do they provide the sort of specific nursing care involved, that is usually required at home? What do they do in these circumstances usually, Eg in TB? Do you know @Jonathan Edwards ?

 

[Leila]

What scares me about closed facilities is the potential lack of control about what's going on inside if overwhelmed/understaffed.

Forcibly removing household members might also cause social disruptions when support for the measures is already fading.

 

[FMMM1]

What scares me about closed facilities is the potential lack of control about what's going on inside if overwhelmed/understaffed.

Forcibly removing household members might also cause social disruptions when support for the measures is already fading.

May not be an easy answer. Your family are currently virus free and have vulnerable members; you have the virus.

Go home and infect vulnerable members of your family versus take your chances in the Government approved isolation hotel --- With your mobile phone you can posts the good/not so good bits!

 

[Jonathan Edwards]

What scares me about closed facilities is the potential lack of control about what's going on inside if overwhelmed/understaffed.

I don't really understand this. An isolation unit is no more closed than a barrier nursed room in a hospital. We do not worry about lack of control in a hospital or what is going on inside and indeed they are overwhelmed and understaffed. There is nothing secret about isolation wards. You just have to wear PPE to go in. The situation of not letting people in even with PPE has arisen in overwhelmed hospitals although Mr Hancock has said he hopes to reverse it.

The only issue is the compulsory aspect of the isolation. But compulsory restriction is a normal part and parcel of the management of anyone who is a danger to others in a civilised society.

 

[mango]

We do not worry about lack of control in a hospital or what is going on inside

Actually, as a person with ME, I do. I've been harmed way too many times, had my patient's rights violated way too many times. Many of my friends have been treated equally badly, or worse. That's stuff of nightmares that can't be unseen or forgotten. It does most definitely affect how I think about closed isolation units and involuntary hospitalisation etc, no matter how necessary they might be.

 

[Leila]

My view might be affected by experience with family members that haven't been treated right in hospitals or nursing homes (being left dehydrated, bedsore etc.) and visiting has been crucial to oversee and report things. And that wasn't during a pandemic.

So I think my worry actually goes to the "not being able to visit" part in all sorts of facilities, not only quarantine centres.

 

[Jonathan Edwards]

Actually, as a person with ME, I do.

OK I agree that there are some situations where there are problems and they very much relate to ME but I cannot see why isolating people to keep them from infecting others - which would involve no more than keeping them on their own should be an issue. It is not an issue of patient's rights or even of personal rights. It is something that is necessary to protect others and for pandemics the rights of others are the most important.

 

[Barry]

Actually, as a person with ME, I do.

OK I agree that there are some situations where there are problems and they very much relate to ME but I cannot see why isolating people to keep them from infecting others - which would involve no more than keeping them on their own should be an issue.

@mango - is it that once isolated it is easier to be bullied/mistreated, by virtue of the fact others are not witnessing what is going on? Or am I misunderstanding? I've not tracked this all through I must admit.

 

[Jonathan Edwards]

My view might be affected by experience with family members that haven't been treated right in hospitals or nursing homes (being left dehydrated, bedsore etc.) and visiting has been crucial to oversee and report things. And that wasn't during a pandemic.

I fully understand that but the issue of quarantining or isolating people is really about people who are in themselves perfectly well. If they are ill then they would be in hospital the way they are at the moment or any other time. I think there may be a confusion between the problems of barrier nursing ill people and quarantine for people who have been in contact or whatever and have to be legally obliged to enter isolation units.