|Posted on February 5, 2014 at 12:20 AM|
We have written an open letter to Karina's guardian and emailed it to him. You can read this below.
Dear Guardian :
We are writing to you out of concern for Karina Hansen. We understand you have been appointed guardian to Karina Hansen and that her parents have written to you requesting she be allowed to have a second opinion provided by an international ME expert - Dr. Nigel Speight. We are respectfully requesting that you allow Karina Hansen to be seen by this expert in a timely matter. We believe this young woman's quality of life, and possibly her life itself, rests on this decision.
We understand that being appointed guardian of someone with such a complex illness can be a difficult task. We have taken the time to research some matters which are relevant to this situation and might be of use to you as you make this decision.
1. Karina has the right to a second opinion. We understand that in Denmark this right to a second opinion is applied in cases that are severe or life threatening. We know that Karina's case is severe as clearly evidenced by her symptoms and quality of life. (To learn more about severe ME please visit http://www.stonebird.co.uk/symptoms.html We also believe it is life threatening. Sophia Mirza is one example of someone who died from ME after inappropriate treatment. You can learn about her at http://www.sophiaandme.org.uk/ . We are very much afraid that if you do not seize this opportunity to have Karina seen by these experts that Karina might suffer a similar fate.
You can read about rights to a second opinion at http://www.who.int/entity/genomics/public/eu_declaration1994.pdf?ua=1 and at http://books.google.com/books?id=iDa_qL--W_oC&pg=PA64&lpg=PA64&dq=Denmark+patient+rights+second+opinion&source=bl&ots=yMxoL6ihEp&sig=AOnN0vIkEDHE3rcHeONNW8Olhek&hl=en&sa=X&ei=wVPtUrH1FpTYyQGmoIDIDQ&ved=0CEcQ6AEwAg#v=onepage&q=Denmark%20patient%20rights%20second%20opinion&f=true
2. We have researched more about Karina's rights as a member of the European Union and we would like to share this information with you. The European Consultation on the Rights of Patients, whose purpose was to define principles and strategies for promoting the rights of patients, provides an excellent point of reference to understand Karina's rights. Especially applicable to Karina's case are the right to refuse treatment, the right to change healthcare providers, the right to enjoy the support of family during treatment, and the right to "thorough, just, effective and prompt" attention to complaints. All of these rights are listed at http://www.who.int/entity/genomics/public/eu_declaration1994.pdf?ua=1 .
Another guiding principle that helped set these important healthcare
laws says that decisions made for the patient should take into account
"what is known and, to the greatest extent possible, what may be
presumed about the wishes of the patient." (Declaration on the
Promotion of Patients' Rights in Europe) Karina very clearly made her
wishes known prior to being taken from her home on February 12, 2013.
She said no to GET (graded exercise therapy) and CBT (cognitive
behavioral therapy). She also said no to treatment by Nils Balle
Christensen. Karina chose her parents to have her power of attorney.
Please listen to what they have to say about their daughter's wishes.
We are a group of people from different countries that came together to ensure that Karina's rights are being respected. We are nonpartisan and have no reason to want anything but what is best for Karina's health. We are making this letter public and we will also share the letter written to you by Karina Hansen's parents (with their full permission).
We request that you take all of these guidelines into consideration and as Karina's state- appointed guardian please make sure that her human rights are being respected.
the managers of Justice for Karina Hansen