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Hello ETR

 

Well if that's not an invite for a formal complaint I don't know what it! Ring the hospital and ask who deals with your type of complaint. Although you will have to say what the topic of the complaint is do not go into details aout it until you are speaking to the right person and be clear that you won't go into details until you are speaking to the right person. It's human nature for people to want to get in on something but you don't want to end up speaking to someone with no authority to resolve your complaint.

 

Once you have established who to speak to, do you want to make a verbal or written complaint? The benefits of a written complaint are that a formal reply has to be made, you control the content and you give yourself time and space to express yourself fully. The down side is the lack of immediate satisfaction that you get from talking to someone.

 

Take care and let us know what happens.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Yes, I really like Amanda's suggestion of a paper trail, ETR.

 

May I also add that should you send a written complaint, you might also send to others involved medically, with a "cc" at the bottom of the letter. In doing this, it's called "covering your sources", as well as making it known to all "interested parties" that this complaint WIlL be addressed, (more than likely by all).

 

Also, if it were I, I would include the hospital administrator in this correspondence, as it is their responsiblity to make sure problems get "nipped in the bud"!

 

Supporting :emoticon-hug: s coming your way...


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi ETR,

 

With all of our input, please keep in mind that none of us are professional patient advocates nor lawyers of any kind.

 

From what I've heard, some doctors or centers are not very receptive to patient complaints and are far more focused on sidetracking or preventing lawsuits than they are in solving the problem at hand. It's very easy for any person or institution to get more wrapped up in avoiding lawsuits than in straightening situations out.

 

When topics devolve into things that might represent real legal issues, our policy is to pull the thread in question -- only because we aren't lawyers and can't provide any sort of legal advice, not because we don't care. This situation is kind of borderline right now. So if things worsen at all, you can ask us to pull the thread (just email [email protected]). On the other hand, if you are able to make some positive progress in resolving things with the clinic, we'd surely love to hear about it!

 

Here are some warm hugs to help tide you over.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Shelley, I finally looked at this post again last night and wrote something then decided it needed more thought. So I'm back again. I thought.

 

First this forum has people's helpful thoughts and I found their ideas useful as I was stuck in a bad place- being angry and feeling helpless and disheartened. Depressed even.

 

But the forum is not responsible for my actions. As my good ol' Mom said to me- "If someone said to jump off of a bridge, would you do it?" That remark must have been learned in Mom 101 as it is still trotted frequently by mothers everywhere.

 

It took a lot of thought and effort and money to make the trip. I am more than a little bit of a hermit and going to the big city is never something I would do willingly. So I really wanted the best advice I could get. It was important.

 

And that hope was frustrated. Not by my illness but by a clerical misunderstanding.

 

Of course medical people are interested in avoiding lawsuits, which is not at issue here anyway. But that does not mean they should put that burden on me. I should not be left hanging wondering what is going on. I am not "a mistake" and best forgotten. Even the messiest buck has to stop somewhere.

 

If I am wrong, I still should have an explanation. If I am not, then I need someone to rectify the problem.

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Hi ETR,

 

I'm glad the forum has been helpful and especially in working through the emotions of all this. Of course it has to be sorted out, and you know, we are all for it getting sorted out; and I know you understand that and accept full responsibility for your own actions.

 

In a way, you have already received some sort of explanation, i.e. that the referral said CREST instead of scleroderma. This most probably means that the appointment powers-that-be had no idea that CREST is an old term for systemic scleroderma. It has fallen out of use by scleroderma experts, over their frustration that local doctors were only diagnosing CREST and then not properly categorizing it as limited or diffuse systemic sclerosis, after that. Given how few people know about scleroderma, it would be even more likely that an appointment person may not have any idea was CREST stood for and in the absence of the key "scleroderma" word, they made a mistake by reassigning your case.

 

Therefore, their concern might be that you have gotten an explanation (however lame it is), but that you aren't happy with it. The patient representative would probably want to know, at minimum, what would make you happy? Do you want to have them set an appointment for you with the real expert you thought you were going to see in the first place? (Probably very do-able, and if it is not, you deserve an explanation.) Do you want them to apologize for it in writing? (Make mental note, that sadly, that is not very likely would not happen simply because a lawyer could use it for ammunition.) Do you want them to reimburse you for your travel expense and time? (Not very likely, probably a referral to a lawyer.)

 

If what you want out of it is an appointment with the right doctor, then that's what you want to state right up front with the patient representative. If you want something more or other than that, it might be lawyer time, and I have no idea if it would be an actionable item or not (or if it would be worth it in the end.) None of that is for me to decide or even advise on as I have no legal training at all. The only thing I know is that institutions can be very pesky when it comes to complaints because of our very litigious society.

 

If it helps at all, and I hope it does, I feel sorry for what you went through and that it was a wasted trip. I've had some unpleasant and many unproductive medical experiences and I know how disappointing it can be. Many of us go through years of pretty much useless appointments and opinions on the way to diagnosis, sometimes seeing a variety of out of state experts before getting our first accurate diagnosis (not to mention, treatment), so it's not like you are alone in this, either. I'm not saying it is right, I'm only saying it happens and we all feel it when there are unsatisfactory situations.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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