Medical Reports and Private consultation

[Mrs Adnan]

Hello everyone,

I need some advice regarding a situation.
My son, 11 years old, has been diagnosed with a rare disease, called Achalasia.

In summary, his esophagus is not opening and the food does not pass to the stomach and comes back in the mouth and he ends up throwing up
So you can imagine he is losing a lot of weight and is very stressed because of the situation.
The disease is unfortunately not curable, only manageable with some procedures.

My question is: the surgeon handling his case, was not even aware of the latest technology for dealing with this, which can cause him relief for some years and instead recommended and in fact insisted on short-term procedures. I tried to convince him but he did not agree and my worst fears came true. My son had his first procedure on 30th April and his symptoms are already back.
I understand that the doctors know best, but is there an option of getting a second opinion somehow?

Also, all the tests they have done, like endoscopy, Manometry, biopsy etc, I just get a paper that just summarizes the findings.
if I want to get the actual test results? like Manometry results are like graphs, from where I can request these?

Thank you in advance!

[tavastia]

Have you tried https://www.kanta.fi/omakanta?

[Mrs Adnan]

I have and there is nothing there!

[FinnGuyHelsinki]

Also, all the tests they have done, like endoscopy, Manometry, biopsy etc, I just get a paper that just summarizes the findings.
if I want to get the actual test results? like Manometry results are like graphs, from where I can request these?

Might sound obvious, but have you asked "them", (the hospital, the doctor,..) from whom you received the summary?

[Mrs Adnan]

Also, all the tests they have done, like endoscopy, Manometry, biopsy etc, I just get a paper that just summarizes the findings.
if I want to get the actual test results? like Manometry results are like graphs, from where I can request these?

Might sound obvious, but have you asked "them", (the hospital, the doctor,..) from whom you received the summary?

Yes, I did Nurses, doctors, everyone keeps saying, check OmaKanta
I explained there is nothing there, and then I get a reply that there is some delay updating everything. My son is being treated for over 3 months now, except for his emergency visit 3 months ago, there is no update.
I explained that I need actual images, graphs, and "they" do not know exactly who to ask. I kept asking literally anyone who I think can help, but they do not know.
I asked my surgeon, he only said that you can ask the hospital, and they might charge you extra for getting those reports.
I asked the info desk as well btw, they did not know as well.
But of course, will keep trying myself as well, but I asked here in case someone knows and can help instead of me asking here and there

[betelgeuse]

Also, all the tests they have done, like endoscopy, Manometry, biopsy etc, I just get a paper that just summarizes the findings.
if I want to get the actual test results? like Manometry results are like graphs, from where I can request these?

Might sound obvious, but have you asked "them", (the hospital, the doctor,..) from whom you received the summary?

Yes, I did Nurses, doctors, everyone keeps saying, check OmaKanta
I explained there is nothing there, and then I get a reply that there is some delay updating everything. My son is being treated for over 3 months now, except for his emergency visit 3 months ago, there is no update.
I explained that I need actual images, graphs, and "they" do not know exactly who to ask. I kept asking literally anyone who I think can help, but they do not know.
I asked my surgeon, he only said that you can ask the hospital, and they might charge you extra for getting those reports.
I asked the info desk as well btw, they did not know as well.
But of course, will keep trying myself as well, but I asked here in case someone knows and can help instead of me asking here and there

Find the privacy policy (tietosuojaseloste) for the care provider (for example, a municipality) and make a GDPR subject access request following the process described in the policy. You might have to make multiple requests to multiple data controllers.

[inkku]

I am sorry for your troubles. Something is not right. There are various data handling systems in the health care and they are not interconnected, and they take time to update them. But you have the right to see and get your results.
https://www.kanta.fi/en/patient-rights
Betelgeuse uo has given you good specific advice, this is what I wrote before I saw it.
If your results are not in Omakanta, you can officially ask the health staff them to provide them as you have done it. If you have not done it yet, you could climb up and ask the supervisor of the staff who have treated your son. Have you tried to put your requests in writing, wondering if that would help?

Under which health care region are you treated (who is responsible for your health care), to check what are their instructions. Here are the instructions of Tampere in Finnish, I noticed that the instructions in English are not the same!

"Potilastiedon arkisto ja Omakanta-palvelu
Pirkanmaan sairaanhoitopiiri kuuluu valtakunnalliseen Potilastiedon arkistoon. Sinne on tallennettu potilaidemme tietoja kesäkuusta 2015 alkaen. Kaikki potilastiedot eivät kuitenkaan tallennu arkistoon.

Jotta hoitohenkilökunta voi katsoa tietojasi potilastiedon arkistosta, kun hoitaa sinua, sinun täytyy antaa siihen lupa. Jos haluat antaa luvan, kirjaudu internetissä Omakantaan. Kuittaa, että olet saanut informaatiota potilastiedon arkistosta ja Pirkanmaan sairaanhoitopiirin yhteisrekisteristä ja anna sen jälkeen suostumus.

Voit käyttää Omakantaa, jos olet täysi-ikäinen ja sinulla on suomalainen henkilötunnus. Omakannassa näet

potilaskertomustekstit
lääkemääräykset
riskitiedot
diagnoosit
toimenpiteet, jotka sinulle on tehty
laboratoriotutkimusten pyynnöt ja tulokset.

Jos huomaat, että potilastiedoissasi on puutteita, voit vaatia niiden oikaisemista. Jos virheet koskevat Pirkanmaan sairaanhoitopiirissä kirjoitettuja potilastietoja, täytä lomake Potilastiedon korjauspyyntö.
www.tays.fi/download/noname/%7BD007DFEF ... 9C%7D/2843
Palauta lomake Taysin potilaskertomuskeskukseen.

Voit myös kieltää, että tietojasi ei saa katsoa terveydenhuollon eri toimipaikoissa. Kielto on voimassa toistaiseksi ja ja voit peruuttaa sen koska tahansa. Jos kiellät tietojesi katsomisen, ilmoita erikseen, voiko tietojasi käyttää hätätilanteessa.

Voit tehdä kaikki nämä asiat myös silloin, kun olet hoidossa osastolla tai käyt vastaanotolla:

Voit kuitata, että olet saanut informaatiota Potilastiedon arkistosta ja Pirkanmaan sairaanhoitopiirin yhteisrekisteristä.
Voit antaa suostumuksen potilastietojesi katsomisesta.
Voit kieltää potilastietojesi katsomisen.

Kysymyksiä ja vastauksia

Miksi kaikki minusta kirjatut tiedot eivät näy?

Tietosi näkyvät Omakannassa vasta sen jälkeen, kun sinusta kirjoitettu teksti on valmis ja ammattilainen on hyväksynyt sen. Tietosi eivät näy, jos niiden näkymistä on rajoitettu määräajaksi tai pysyvästi.

Pirkanmaan sairaanhoitopiirin kuvantamistutkimusten tulokset eivät vielä näy Omakannassa. Tämä johtuu siitä, että nämä tiedot eivät vielä siirry Potilastiedon arkistoon. Myöskään kaikki Potilastiedon arkiston tiedot eivät vielä näy Omakannassa."