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Showing posts from February, 2014

Justice for Karina Hansen's Petition

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

A desiderata for Carers

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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

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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 CrowhurstStonebird © 2014


Risk Assessment in Severe/Very Severe ME

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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 amInsight :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 hypersensitivityKnowledge : 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…