Your experience with Achalasia care across different global healthcare systems?

Achalasia
#1

Greetings from the States! I am curious to hear about people’s (mis)adventures through the healthcare system (especially those that outside of the USA in a nationalized healthcare system).

I have had symptoms of achalasia for a year now. 5 months ago I was hospitalized for a food impaction & dehydration and finally diagnosed. In about a month I will (hopefully) get a surgical consult for a heller myotomy. I am very frustrated that it has taken me 6 months to get this surgical consult, even thought I have an excellent health insurance plan, and I even work at the hospital where I am going to be treated. (Oh brother, I haven’t even started fighting with the insurance companies)

I would like some feedback from the achalasia community concerning

  1. What sort of healthcare system they’re in (American Medicaid/Medicare, HMO, PPO, self-pay, nationalized health care system).

  2. How long it took to get the initial diagnosis (# of visits, length of time, availability of skilled doctors within geographical area and/or financial means).

  3. How long it took to initial treatment (# of visits, length of time, availability of skilled doctors within geographical area and/or financial means).

  4. What sort of problems you face paying for quality care.

  5. Rate each 0n a scale of 1 to 10
    a) hospital beauracracy (i.e. scheduling, consults)
    b) insurance beauracracy (i.e. making claims, refusal of payments)
    c) quality of treatment
    d) quality of recovery care
    e) quality of follow up care
    f) overall satisfaction

Obviously some of these answers are more subjective, but the more feedback I get from you, the more I can formulate questions with discrete answers. Plus, I’m interested to hear some of the nuances of your individual stories, especially from those that are paying out of pocket or who are receiving care outside of the states)

cheers

#3

Hi,
Im Merel from Holland im diagnosed with achalasia in march 2009.
1)We have a private healthcare system, all residents of the Netherlands are obliged to take out a health insurance. This cost about 100 euro each month. If you need medical help you only have to pay a maximun of 155 euro per year (own risk) the rest of the bills are payd by the insuranse compagnie.
2)it took 5 month to get a diagnosis i had the following test:
Hospital im my home town:

  • Barium swallow
  • Esophagogastroduodenoscopy
  • Biopsie
  • MRI
  • I had to eat a pancake with barium and they took photo’s of 2 hours to see where in the digestive system it was (i dont know the english term for this test)
    Holsptal 1 hour driving from my home town:
  • esophageal manometry

During all this i could not eat for two months resulting in hospital admittance to admit fluids intravenous and to take nutrition trough a nasogastric feeding tube.
3) Two days after the diagnosis i got my first pneumo dilatation and one week later the second pneumo dilatation.
4) i have no problems to pay for the costs. The hospitals send the bills to my insurance compagnie and they pay for them. I only have to pay 155 euro.

a) 8 if i need an apointment i have to wait only about one week.
b) 10 i dont even see the bills, they go directly to my insuranse compagnie and they pay the bills
c) cant grade that, we have the following options:

  • Dilatation
  • Heller myotomy
  • Botox
  • medication
    d) after the dilatations i had a conversation with the doctor
    e) i have to see my doctor once a year to check how it is going and once evrey tree years they check for esophageal cancer.
    f) 8

The diagnosis whas the biggest problem because it such a rare disease. The hosital in my home town could not get a diagnosis, the hospital where i go now has a department specialised in motility disorders they got the diagnosis and there i go for treatment. Im verry satisfied with the hospital that i have now.

i hope my answers are helpful
Merel
PS. i am sorry if my english is not entirely correct

#4

For now, our system, in the US, is the best, but certainly expensive. Over the next few years, I anticipate the current administration to limit access to speicalist care, like that needed for achalasia treatment. Good luck…

#5

the best in US!?

In Norway f.ex. it is completely free for all citizens (better to say included in the public social securuity system), with access to leading surgeons for everybody. Almost in whole Europe is the same (free or some symbolic fee), as far as I know…

#6

Also, looks like in your “free” system, Merel did dilatation first, which is certainly much cheaper- was that her choice, or one that was chosen for her. I would urge you to read up on the diiferent options, surgery has become the accepted first line therapy, and studies have shown that by starting with balloon dilatation, when she needs surgery, and she will, the likelihood of success is much lower, probably from all the scar tissue that builds up after dilatation.

#7

Sicko is fiction based on some truths. Michael Moore is an excellent entertainer, and makes a fortune doing it.

#8

Merel,
In the other post you wrote that you had 2 dilatations in March, and now your symptoms are back, sounds like a pretty quick failure- did you not get treated by one of these expert specialists that you describe in your healthcare system?

#9

Hello again,

Personally, I have been advised to have a surgery by public hospital surgeon specialist, that certainly has considerable competance as he is doing this kind of surgery for 20+ years. System is like this: when there is suspiction about achalasia f.ex., the patient is sent to one of the several public specialists for the disease. I decided to refuse / postpone it as I still manage to live more or less normally with achalasia.

Do not forget that here we have also possibility to go to private specialists / surgeons (the same as you) and this is in addition to public health service (that is really on high level). The main difference between these two is waiting time. Even when you go to private doctor, you usually pay only part of the full cost and the rest is covered by public social insurance (or as we say by the “state”).

It is not only doctor appointment that is covered by public health system, they are also covered all expenses in connection with that, like airline tickets (or other transportation costs) as well as accommodation (hotel, etc).

You have right when you say that nothing is “free”. We all pay significant tax here that is used to cover the costs of public health insurance (in addition to other public costs) that is available to any citizen (poor or rich). But we also still have our “net” income (that is what is left after paying taxes) which is still significantly higher than in US for the same job (for most of the “normal” jobs) at least when we talk about Norway.

Finally, I have seen the movie “Sicko” by Michael Moore and can not understand that people there accept to live with such health system. Especially poor people and people with moderate income.

Regards

#10

Yes i did,
The reason i did the dilatations first is that in 80% of the cases the dilatations work, im just one of the unlucky 20% for who the dilatations dont work. So i made an appointment with my doctor to see what the next step in my treatment is.

#11

Ok, you think that is better. I assume you would want a surgeon who has seen a lot of achalasia patients to treat you. When you find me a surgeon in Norway who has done over 300 laparascopic Heller myotomys, let me know. It’s your life, choose carefully. Oh, and do you get to choose your treatment, or does the system want you to try other methods like dilatation first?
And remember, nothing is “free”. Nothing.

#12

Hi,
I personally agree with serno.

The European health system is much more accessible for all people, here in Holland we can choose in which hospital we want to be treated and by which specialist. Here the size of your wallet has nothing to do with the quality of the care you can get in the hospitals. And the quality of the hospitals and specialists is at least as good than in the US. And if I choose to be treated by a specialist in another country (like Belgium of Germany)it is also possible, my health care insurance will pay for it. Like serno explained, we all pay taxes to pay for this healthcare system. But I think it is certainly worth it because poor or rich, you get the best treatment there is available.
Now for achalasia specific, in Holland we have multiple specialized professors, also in Belgium and Germany there are specialists. I myself work in the medical system (in a pathology laboratory) and I have done my research before I got treated with dilatation. In most cases of achalasia, dilatation will ensure a symptom free life for several years, it is also the least invasive treatment with the least chance of complications. I chose to try dilatation first and if it doesn’t work for me I can go for the Heller myotomy. So yes it was my choice to try dilatation first, if there is a chance that I don’t need surgery I will take it. In our heathcare system you can chose your own hospital, specialist and treatment.
Merel