A Doctor's Wake-Up Call on "Awareness" Day

[Hope123]

I don't have the energy to read through all the posts here but the best advocate usually for a person in the nursing home is their family members or friends. By visiting regularly and talking to staff, family members assure these residents get better care. In terms of finding a physician, as I mentioned in my first post, Dr. Yes can try asking the nursing director for a list of who goes to his specific nursing home. (As I recall also, Dr. Yes has family members who are in healthcare but I don't know his relations with them.) The quality of nursing homes are not as good as many would like; it's a complicated issue that encompasses not just medical but social, legal, financial, etc. issues. One of my contacts used to sit on Congressional panels assessing nursing home care quality.

For a non-family-related advocate for residents, this usually comes in the form of an ombudsmen through the state. They work for free. The problem is, the quality of ombudsmen vary and oftentimes, they are overworked and focused on immediate life-threatening health issues. Here is the link for NY:

http://www.ltcombudsman.ny.gov/whatis/ombudsman.cfm

 

[strawberry]

Dr Yes I just want to add my sympathy here. Your situation is absolutely appalling and I hope you manage to move somewhere else. And I don't think your post is a rant, it's a very lucid account of the kind of problems that p/w ME can face.

 

[tymewarp#9]

Dr Yes, this is why I'm so afraid of people in the healthcare industry, and you are a hero for attempting to REASON with such a 'difficult' doctor (to put it nicely). I wish to be like you! (Bravery, self-control, utter tolerance in the face of that abuse - you are amazing!) I'm glad you shared that experience; it needs to be known. This humiliation that we face is utterly ridiculous, as is any physician's refusal to look at science (i don't know who first said it, but "Denial ain't just a river in Egypt" comes to mind). All I can do is to say ThankYou for being You and for making me laugh -and THINK!- so much since I first found this wonderful Forum, & send you 'vibes of Good will' -You are in my thoughts! -t.

 

[calzy]

does anyone know if Dr. Yes has his own computer?

 

[Overstressed]

Hi Dr.Yes,

well, to say you're not alone on this world: on the other side of the Atlantic ocean, in my family doc's practice, I experienced the same behaviour. Once I came back in his practice, with a diagnosis of CFS, he said: Oh my god, is that all they can say, the specialist at the University hospitals ?! It's a wastebasket, it doesn't exist...

We're all alone, but we have us, right here, right now...

Take care,
OS.

 

[Marjorie Dawes]

You poor man.

I feel hard done by sometimes having to live back with my parents (who generally ignore me) single and childless at 37 but my god, I've never had an experience as bad as that.

Hurry up and find out with this horrible thing is so we can get on with our lives and stick two rigid fingers up at these arseholes!

 

[Angela Kennedy]

I've only seen this thread today because I've been mostly off-line over past week or so because of house move.

I'm so sorry Doc.

I'm with those who are advising an advocate. Is the CAA an organisation who could/should be stepping in?

Obviously I'm not in the U.S. Here in the UK, we have the NHS- which, despite being socialised medicine, does have a complaints procedure. Does Medicaid have similar I wonder?

Having said this though- you have to deal with it as you are able. No matter how I want to come over and knock some knowledge into this guy's head (!) I do appreciate that you need to develop your survival strategy in the best way you can - which means I can't come over with a rolled up copy of the Canadian Guidelines... (!)

Gerwyn - yes, the psychobabble has had a particularly pernicious effect upon medical reasoning for some time now. It's never quite gone away.

 

[Robin]

I'm with those who are advising an advocate. Is the CAA an organisation who could/should be stepping in?

The CAA will not advocate for individual patients. There was a court case here recently where an ill child was taken from his parents by CPS -- see this post about why they refused to get involved.

There is no advocacy organization or infrastructure for severely ill CFS patients who can not advocate for themselves. As Kim pointed out earlier on this thread it is badly needed.

Dr. Y's advocate should be the social worker on staff in the nursing home but she hasn't helped him. It doesn't seem like Medicaid would be the correct avenue of complaint. I think, for safety reasons, nursing homes prohibit electic chair and scooters. The nursing staff should be wheeling him around and the doctor should order it. As has been mentioned upthread he has to be very careful to not piss off anyone who has power over him. His best bet would probably be to transfer or find some type of assisted living situation.

 

[ixchelkali]

Dear Dr Yes,

Reading your story made so angry, as stories of abuse of power and sadism general will. Can you imagine a doctor telling a late-stage AIDS patient or cancer patient in a nursing home that he was living like a king? But it also frightens me, because that could very easily be me in the not-too-distant future. Its a cautionary tale, because it could be any of us. Its also a reminder of why we have to keep advocating.

I think the reasons so many people here want to find a way to help you are
1) We love you. Speaking for myself, you so often brighten my day and help me to find humor in things that are, in reality, pretty bleak. You make me laugh and I need all the laughter I can get. But you also offer valuable insights, or express what Im thinking. Youre one of the reasons I joined this forum.
2) The problems with the politics of ME/CFS are so huge, so global, so seemingly intractable that sometimes it feels like our efforts arent making a difference. We need to fix the system so that no one needs to go through what youre going through. But helping you, helping one specific person that we know, seems like it should be achievable. It would give us a success, like raising the money for Lucinda Batemans computer did.
3) We do know it could be any one of us. And if we dont help each other, who will? Who else cares enough?

So its both about you and about all of us.

I love the image of the leather-jacketed Valkyries in a sidecar swooping down to carry you away! The image that popped into my head was from Harry Potter, when his friends pull up in a flying car to rescue him from his cruel uncle and aunt. Thats what I want to do with you. What I want to do with that doctor is another thing... I always say I wouldnt wish this illness on my worst enemy, but I might make an exception for him.

Your situation is horrible. But they havent crushed your spirit. I hope we can help you with that.

On a practical note, from the New York State Office of Long Term Care website Ombudsmen use the appropriate means necessary to ensure care is being given to every person living in long term care facilities. The ombudsman for NYC is Debbie Warburton. 212-962-2720, dwarburton@nyfscltcop.org. You may be right not to rock the boat too much, but if it should begin rocking anyway, shes someone you can call.

Remember youre not alone. You have all of us on your side. And thats a force to be reckoned with.:Retro smile:

 

[Dr. Yes]

Hey Beautiful People,

Thanks so much for all the continuing support and laughs (the best kind of therapy) and music (the other best kind of therapy) and brainstorming. I'm really burned out right now or maybe I could have found the right words to tell you how this makes me feel. Or not.. it's overwhelming, and I was totally not expecting it.

Many thanks to Caledonia and others for suggesting a geriatric care manager.. Following that lead (and with help :Retro smile I already got the name of a possible person in NY who might fit the bill.. I have to call him but it will take a while (I have at least a week of hell ahead, including pulmonology and dental apptmts )

Folks, please dont worry about fundraising for me, either for paying an advocate or getting a wheelchair.. As far as the advocate goes I have to find out what is available first anyway, including speaking to different potential advocates on the phone; I also may be able to get this paid for by other means (insurance? relatives? I'll find out) As for the wheelchair, I have to investigate the possiblity posted by shrewsbury (from the person who contacted her) about risks with Medicaid; I have heard something similar over here so will first need to find the right person to advise me about All that Could Go Wrong.

@Tymewarp, about doctors who deny the science - my feeling is that they refuse to see science papers because: (1) They don't want to be bothered, especially as they have already made up their minds that we are hypochondriacs wasting their time, (2) they know that they wouldn't understand the science even if they read them, which would be rather embarassing for them, and (3) they are afraid to act clinically on research findings, as they have in their minds completely divorced science from whatever it is they practice. They go by an informal consensus of opinion within their small professional circles, not by any new information, unless there are mandated guidelines from Above that have filtered down to them (and that would render them liable for malpractice if ignored).

Calzy: yes I have my own computer, luckily! A laptop that has made a big difference in my life.. things would be a hell of a lot more grim now without it. Actually the worst stuff that has happened to me took place before I had a computer (i.e. a year ago). I do not think that my case is that unusual at all. We just don't hear from those who don't have a computer (or who happened to get one from a relative last year..).

There is no advocacy organization or infrastructure for severely ill CFS patients who can not advocate for themselves. As Kim pointed out earlier on this thread it is badly needed.

Yes, it is desperately needed. There is a terrible silence about these issues in American CFS advocacy. In the UK there is the 25% ME group, at least, which is a charitable organization. I know of no such group for the assistance of CFS patients here. As for the Ryan Baldwin case, I think only PANDORA and a few small support groups got involved and publicized the case more widely.

 

[Dr. Yes]

Hi Ix,

Sorry, didnt see your post til after I posted mine.

Thanks for everything you said. :Retro redface:

But it also frightens me, because that could very easily be me in the not-too-distant future. It’s a cautionary tale, because it could be any of us. It’s also a reminder of why we have to keep advocating.

Absolutely - and to develop a new front of advocacy from the grassroots level, aimed at improving the immediate, real life situations of the many people with ME/CFS who are struggling within a system that works against them. Formation of charitable groups on local and national levels with the aim of providing material assistance (housing, food, computers, personal advocacy work, etc) to individuals should be a first priority.

On a practical note, from the New York State Office of Long Term Care website “Ombudsmen use the appropriate means necessary to ensure care is being given to every person living in long term care facilities.” The ombudsman for NYC is Debbie Warburton. 212-962-2720, dwarburton@nyfscltcop.org. You may be right not to rock the boat too much, but if it should begin rocking anyway, she’s someone you can call.

Thanks!! I just wrote down her number and will investigate. This sort of thing, as I said, may indeed be necessary.

But they haven’t crushed your spirit. I hope we can help you with that.

You already have.

 

[tymewarp#9]

tee-hee! ....the image of that so-called 'dr.' getting embarassed and his knickers all up in a twist, as he attempts to comprehend some of the more recent scientific papers! HA! I'd not thought of that!

 

[flex]

Dr. Yes this is you!!

[video=youtube;V4S3q6v8nBI]http://www.youtube.com/watch?v=V4S3q6v8nBI&feature=related[/video]

 

[Orla]

Suggestion for thread

Just a suggestion for a thread that might be of use. Maybe there should be one on what practical help is out there for people (maybe threads for different countries? Or in the US for different States?) There is probably practical supports out there for people which might be of immediate use, but they don't know about them, or don't know how to go about accessing them.

I am not talking about ME/CFS specific organisations (though they could be listed also) but general organisations and so on which help people deal with practical issues. Many of these will be non-illness/condition specific so open to people with ME/CFS.

Orla

 

[flex]

Sorry for hogging the last few posts with all my favourite vids but the Dr. has PMd me and said , like me, Jimmy Cliff is his favourite and named a few tunes. Now things are looking up for you doc here's the last vid i'll post here..... I promise! Better days are coming!!!!

[video=youtube;MMWp0WmxoNw]http://www.youtube.com/watch?v=MMWp0WmxoNw&feature=related[/video]

 

[calzy]

awww..Flex...so cool, i cried.....Arent all these people wonderful Dr. Yes?

 

[Dr. Yes]

awww..Flex...so cool, i cried.....Arent all these people wonderful Dr. Yes?

Yes you all are

 

[bel canto]

Flex, thank you!!