Attempting to get off Ropinirole - again

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QyX
Posts: 708
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Attempting to get off Ropinirole - again

Post by QyX »

When you live in a big city in Germany, you normally can see a specialist within 2 months. Betties issue would be quickly fixed in Germany. Some doctor would just admit her to a hospital and then that's it. In the german system, they understand that it is an urgent issue and waiting longer will only lead to more costs and more medical problems.

Problems in Germany mostly happen when you have a rare conditions or an unusual severe form of a common conditions. It is also still problematic to find treatment for adult ADD / ADHD and autism diagnostic but the situation has improved.

Healthcare in Germany is far away from perfect but a lot of things are still really good and are working well and even the poorest will have access to quality health care.

Polar Bear
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Location: N. Ireland

Re: Attempting to get off Ropinirole - again

Post by Polar Bear »

Yankiwi. Your comment about excellent care when you get to the top of the queue is exactly how it is. Our family who are working in the NHS say the only way to get speedy treatment is to be carted in on a stretcher

Ann.... Yes it's like this across the entire UK. The Tory government have been in power for 10 years and have cut corners, and more corners.
There's is no way we could spend any length of time over there. For various reasons including I just wouldn't feel up to it and couldn't afford the cost of several months accommodation and expenses.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Location: Los Angeles

Re: Attempting to get off Ropinirole - again

Post by ViewsAskew »

Polar Bear wrote:
Fri Jul 24, 2020 5:38 pm
Yankiwi. Your comment about excellent care when you get to the top of the queue is exactly how it is. Our family who are working in the NHS say the only way to get speedy treatment is to be carted in on a stretcher

Ann.... Yes it's like this across the entire UK. The Tory government have been in power for 10 years and have cut corners, and more corners.
There's is no way we could spend any length of time over there. For various reasons including I just wouldn't feel up to it and couldn't afford the cost of several months accommodation and expenses.
Makes sense :-(. Wish it weren't so.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

QyX
Posts: 708
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Attempting to get off Ropinirole - again

Post by QyX »

Polar Bear wrote:
Fri Jul 24, 2020 5:38 pm
Yankiwi. Your comment about excellent care when you get to the top of the queue is exactly how it is. Our family who are working in the NHS say the only way to get speedy treatment is to be carted in on a stretcher

Ann.... Yes it's like this across the entire UK. The Tory government have been in power for 10 years and have cut corners, and more corners.
There's is no way we could spend any length of time over there. For various reasons including I just wouldn't feel up to it and couldn't afford the cost of several months accommodation and expenses.
I don't understand why so many workers in the UK voted Tory in the last election. Many of them are older people who worked hard in all of their lives and often have many medical problems. But with those waiting times, the NHS is in much worse shape than I ever thought possible. It is so hard for me to understand why so many people vote against their own interest in such a crucial area.

Here in Germany they complain when you can't get an appointment with a specialist within 4 weeks.

The German system is not perfect either and I currently have sue my insurance company so that they cover my cannabis therapy and it might also take a while to get that appointment with that special sleep clinic but most standard specialists you can easily see within 2 months when you life in a town.

However things can become more complicated when you need an MRI for minor things but those experienced enough know ways to game the system a bit. Of course, when you are privately insured (which are most people who work for the government and then some of those who are self-employed) they do things like a MRI for no reason.

So there are always discussions about getting rid of the private system in Germany but the doctors like it: money money money.

Polar Bear
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Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Attempting to get off Ropinirole - again

Post by Polar Bear »

QyX said
Here in Germany they complain when you can't get an appointment with a specialist within 4 weeks.
Normally - What we would do when using the NHS and in order to save time is to request a Private Initial Appointment and then transfer to that Consultant's NHS list. For the cost of around £250 for the private initial appointment it is possible to avoid the long waiting list. The private appointment used to be available in a week or so.
Not any more. Last December 2019 I requested a private appointment and it was provided for March 2020.
The reason for this is that because the NHS has such long lists everywhere more and more people are paying for an initial private appointment.

When I evenrually privately saw the neurologist who after an MRI referred me to a Sleep Consultant I got the sleep study done and have received the result. But the Sleep Consultant (who was the only one on my Insurer's list) cannot see me on his NHS list as NHS is dealt with based on your post code. This means he had to refer me to my local hospital and noone in that Sleep Clinic does private work. So although I have a test result I still have to wait on the list.
If I had lived near to where the Private Sleep Consultant did his NHS work I could have gone onto his NHS list and he would already have seen me for the initial consultation. Over here we refer to it as the Post Code Lottery!!

I should say that my current medical insurance is very basic. It covers consultation and tests up to a capped figure. For something simple it may cover some treatment. To have good private insurance usually comes with employment which can continue at a discounted rate after retirement, but only up to age 70. It is of course possible to pay this in full after 70 but it is so expensive. All of our friends who had private medical insurance are now in the same position as ourselves. One used his savings to pay for a new hip £15,000 and his wife a hysterectomy £6,000 having previously had private insurance as an employee. Though I think these costs are likely to be much less than in the USA.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Yankiwi
Posts: 471
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Attempting to get off Ropinirole - again

Post by Yankiwi »

New Zealand has a Post Code Lottery for cancer treatment. My insurance is only for big ticket items such as cataracts and joint replacement which I hope I'll never need. Insurance in the US (where my siblings live) is expensive but you can get a hip replacement in a month, even once you are retired and on Medicare where the copay isn't that high.

Polar Bear
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Location: N. Ireland

Re: Attempting to get off Ropinirole - again

Post by Polar Bear »

Know it can't be just as simple as this but why not just charge an NHS tax on our incomes.
Everyone needs healthcare, everyone agrees it is underfunded. The money has to come from somewhere.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Polar Bear
Moderator
Posts: 8010
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Attempting to get off Ropinirole - again

Post by Polar Bear »

With regard to the hospital waiting list being 3 years to have treatment for sleep apnea despite having an up to date diagnostic sleep test my daughter in law is going to make enquiries. She works in one of the big city hospitals and is acquainted with person who runs the respiratory department (sleep apnea treatment) in this hospital...... Which is not the hospital I am referred to.

DIL is going to ask it there is anything in her opinion that would get me moved upwards. I assume stressing on certain other conditions that would benefit from decent sleep etc. and the best way to approach such a move..... The buzz words. Anything that could get me onto an urgent list. (I guess the fact that this head of respiratory department is the daughter of my husband's cousin wouldn't carry any weight....lol )

Probably then get my GP to do a follow-up letter to my referred to hospital.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Posts: 16259
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Attempting to get off Ropinirole - again

Post by ViewsAskew »

Polar Bear wrote:
Mon Jul 27, 2020 1:35 am
Know it can't be just as simple as this but why not just charge an NHS tax on our incomes.
Everyone needs healthcare, everyone agrees it is underfunded. The money has to come from somewhere.
Polar Bear - I know that people get tired of being taxed, but that does seem the best to me! If our money was used well with no fraud or wastes, I imagine most of us would rather have these things (well, maybe not in the highly individualistic US, but in most places).
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
Moderator
Posts: 16259
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Attempting to get off Ropinirole - again

Post by ViewsAskew »

Polar Bear wrote:
Sun Sep 13, 2020 9:58 pm
With regard to the hospital waiting list being 3 years to have treatment for sleep apnea despite having an up to date diagnostic sleep test my daughter in law is going to make enquiries. She works in one of the big city hospitals and is acquainted with person who runs the respiratory department (sleep apnea treatment) in this hospital...... Which is not the hospital I am referred to.

DIL is going to ask it there is anything in her opinion that would get me moved upwards. I assume stressing on certain other conditions that would benefit from decent sleep etc. and the best way to approach such a move..... The buzz words. Anything that could get me onto an urgent list. (I guess the fact that this head of respiratory department is the daughter of my husband's cousin wouldn't carry any weight....lol )

Probably then get my GP to do a follow-up letter to my referred to hospital.
Sounds good! Take all the help you can get from whatever source! Well, almost whatever source, lol.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Posts: 5870
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Attempting to get off Ropinirole - again

Post by badnights »

did it work? did the nepotism network do its thing?
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Polar Bear
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Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Attempting to get off Ropinirole - again

Post by Polar Bear »

The relative nurse who was head of the respiratory department in my dil's hospital has moved to another hospital.

However following a discussion with staff in that department dil was advised to speak to a particular Respiratory Consultant who works there part of the week and until recently was the Head Respiratory Consultant in the hospital to which I have been referred.
Unfortunately he was on 2 weeks holiday.
Dil wanted to let him return for a few days before emailing him, did not want it buried amongst his holiday mail.

A few days ago she got a message to say he was in the hospital so she and a colleague spent some time searching for him without success. It is a very large major hospital and of course with the rise of Coviid again all is very busy. She would prefer to speak to him face to face.
Should she fail to manage this in a week or so she will email him and has a copy of my sleep test result for information.
Staff have said he is very approachable and dil hopes to ask....what would he do if it was his mother.

Just to reiterate the sleep clinic I must attend is allocated by post code and does not see any private patients.
I guess we hope he would speak to a colleague in my sleep clinic and draw their attention to my already done sleep test. (Stall there have probably just shoved my referral onto their 3 year long referral pile.)

At present I am getting 2 nightly naps totally approximately 4 hours ..... More or less. And every few days I have a day where I keep falling asleep, washing dishes, brushing hair, middle of a conversation. I actually fell asleep while standing in the kitchen, falling backwards to the floor and putting a dent in the dishwasher on the way down.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Posts: 16259
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Attempting to get off Ropinirole - again

Post by ViewsAskew »

Ugh - that is so scary. You could truly hurt yourself, Betty.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Posts: 8010
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Attempting to get off Ropinirole - again

Post by Polar Bear »

It was a helluva clatter as I went down at 3am and my husband upstairs didn’t hear a thing, didn’t waken. Quite funny because just where the dishwasher is sited is a confined area and there wasn’t much space left when I was couped between it and the facing cupboard. I was like an upended turtle. Not a pretty sight ..... lol
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
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Posts: 5870
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Attempting to get off Ropinirole - again

Post by badnights »

dear god. Surely that sort of incident would impact their triaging - if they knew about it somehow!
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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