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Justice for Karina Hansen's Petition

We ask you to allow Karina Hansen to have the right to a second opinion from a leading ME expert Dr Nigel Speight.

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    2. Petition by
We believe that Karina's quality of life and possibly her life itself, rests on this decision.
Karina has a complex illness that is severe, which is clearly evidenced by her symptoms and quality of life.
We also believe that with inappropriate treatment for severely ill patients with ME, this could be fatal. As was the famous case of Sophia Mirza, who was unfortunately in similar circumstances to Karina.
We are concerned that if this opportunity is not seized for Karina to see these experts, then she might suffer a similar fate.
The European Consultation on the Rights of Patients clearly state that Karina is entitled to refuse treatment, the right to change healthcare providers, the right to enjoy family support during treatment and the right to "thorough, just, effective and prompt" attention to complaints. These rights are being ignored.
Karina very clearly made her wishes known prior to being taken from her home on February 12th 2013.
Karina said NO to GET (Graded Exercise Therapy) and CBT (Cognitive Behavioural Therapy)!
Karina said NO to treatment by Nils Balle Christensen!
Karina chose her parents to have power of attorney!
Karina is being ignored.
We are asking you to sign this petition to make sure that Karina's rights are respected and listened too.
We know Karina is severely ill and all we are asking is for the best for her health and well being.
Now is the time to stand together in unity to ask for a second opinion to be granted by a leading ME Expert.
Help us make this happen for Karina by signing the petition and sharing. Together our voice will be heard for Karina!
A copy of the open letter sent to Karina Hansen's guardian:
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 visithttp://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. 


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 athttp://www.who.int/entity/genomics/public/eu_declaration1994.pdf?ua=1 .



3. 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.

                                      Respectfully,
       
                                          the managers of Justice for Karina Hansen

PLEASE SIGN the PETITION here :

A desiderata for Carers


Look after yourself. 

Be kind and affirm who you are.

Be loving, especially to yourself. 

Learn all you can. 

Remain focused on the person, who they are and 
do not forget this even when illness seems to deny it. 

See the person but recognise their illness reality, so that 
you can understand the impact on both your lives.

Take space for yourself to heal your own wounds and 
losses. 

Be gentle to yourself, especially when you 
struggle to make sense of the illness and its impact.

Keep healthy by eating well and keep fit if you can. 
Do things you like to do, but be flexible as to how and 
when you do them; think in new ways. 

Be together in whatever way is possible. 

Do not let systems or people be divisive or come between you. 

Do not “clientise” your loved one or let anyone else depersonalise them, so that your relationship stays strong. 

Find ways of connecting as your essential selves. 

Express your emotions safely. 

Be all you know, in all you do.  

Greg & Linda Crowhurst (c) 2014

How to Protect Yourself

1. Do not let yourself be perceived as helpless 
or a victim.


2. Be careful whom you trust; make sure they are worthy of this precious gift.

3. Maintain clear boundaries between yourself and them especially if they are providing a service for you. They are not necessarily your friend.

4. Write down and record all agreements.

5. Be certain that if someone is speaking on your behalf, they actually represent you and not their own opinion.

6. Let go of people and things that demand you be other than who you are for their own purpose.

7. Be clear.

8. Understand ME politics and those who play within it. Understand their motivations, how and what they represent.

9. Find people who are congruent with your deepest values; check this is so, do not assume.

10. Be aware so you do not get caught up in other people’s Persecutor / Victim / Rescuer games.

Greg & Linda Crowhurst
Stonebird © 2014



Risk Assessment in Severe/Very Severe ME


Stonebird

It is a massive risk for anyone with Severe ME to let any medical professional into their life. 

Our (painful) experience has taught us the importance of carrying out a Risk Assessment of the professional that the person with Severe ME is about to trust potentially with their life, to make sure they really know  about Severe ME and how fundamentally physically ill the person is.

R.I.S.K  A.S.S.E.S.S.M.E.N.T :

Respect :I need to feel you respect me and know how seriously ill I am
Insight :I need you to have insight and awareness into the physical dysfunction in Severe ME.
Sensitivity:I need to know that you will approach me with immense sensitivity taking account of my acute environmental hypersensitivity
Knowledge : I need you to have in depth medical knowledge of system dysfunction , investigations, tests, treatments and an understanding of how to aid me in accessing them
 Awareness :I need you to show that you are aware of how you approach me and how easily I can be harmed by what you might suggest, because of my frailty and illness.
Sincerity :I need you to be focussed and sincere in your intent and ability to help me.
Stillness :I need you to be centred in stillness and be very aware of my needs and my communication difficulties and how you might unintentionally make me more ill
or increase my symptoms.
Empathy:I need you to try and understand my reality and relate to it in all you communications, your contact and any suggestions you make to help me, realising the need for flexibility in every moment.
Sharing :I need you to share your ideas with me and include me in any decisions, however complicated that may be to figure out, so that I know you have considered the risks to my heath and well being.
Sensible :I need your input to be sensible in terms of my physical reality not just yours, which is so very different to mine, so that it does not do harm to me under the guise of caring, yet not considering me in reality.
Mindful :I need you to be consciously aware of every interaction and its possible impact
Experience :I need you to have in depth medical knowledge and experience
Non- judgemental :I need you to see me clearly and understand my experience, not judge me falsely with psychosocial misinterpretations that negate me and my severity of illness.
Together :I need you to work together with me, not impose wrong treatment pathways and then blame me when you harm me or they fail.

Greg & Linda Crowhurst (c) 2014