maanantai 23. maaliskuuta 2015

The story of disabled Samu touched the readers of IS - got the Chasswheel Four X as a donation!

Finnish newspaper Ilta-Sanomat (IS) published a story about disabled Samu on February. The story got a huge amount of positive feedback - in addition he also gets a brand new Chasswheel Four X electric wheelchair and starts to design a new safety game. Samu is like anyone 14 years old teenager except he is also a person with a disability, because of the bones and gristle genetic developmental disorder. Samu cannot walk, but the family said they live normal happy life -happiness is right here, right now. Samu is a normal boy hanging out with friends, playing Playstation and his story was touched by many readers. "Teachers at school came to tell me that it was a good story and my taxi drivers did read it too and told the others that they drive my to school. It is always nice to get positive feedback."

Even bigger surprise was coming. We got a phone call from Chasswheel Ltd. and they would like to donate an electric wheelchair for me to be able to move around easier and different ground, even over some steps! The whole family is very touched by this donation and now Samu don't have to stay far when his friends go to the beach. He used to wait them on the road 20 meters from the beach, because he could not get there, but with this new wheelchair it is possible. Also moving in everyday any streets is going to be easier, because Samu can cross sills, pavings, icy roads and other obstacles independently. "Some walking streets has very high step on the side and Samu has had to drive on driving way sometimes." says Samus mother Janet. Samu also mentioned that he wants to study game designing and now he gets also an opportunity to test new safety game.

keskiviikko 4. maaliskuuta 2015

Why the health care systems do not care about the quality of life of wheelchair users?

The 15D Instrument developed by Harri Sintonen evaluates patients life quality with these 15 dimensions in many hospitals:

  • Mobility                      
  • Vision
  • Hearing
  • Breathing
  • Sleeping
  • Eating
  • Speech
  • Excretion
  • Usual activities (hobbies etc.)
  • Mental Function
  • Discomfort and symptions
  • Depression
  • Distress
  • Vitality
  • Sexual activity
I bolded those parts in 15 Instrument of life quality of which is possible to effect with choosing the right wheelchair for the patient. It is important to know, how patients condition and welfare is measured and is this Instrument used also for something else than statistics? Does for example instant costs and costs in the long term effect on decision-making process? Or is the quality of life one of the criteria's in choosing the wheelchair for the patient?

Quality of life is very discussed topic in health care sector and this 15D Instrument is one of the tools used by hospitals to measure the healthiness of life years. Unfortunately the quality of life is not any criteria of choosing the right wheelchair for patients lifestyle. For example if the patient owns a summer cottage and would like to go fishing in summer time, but that is not a basic right of having a summer cottage and therefore the wheelchair cannot be chosen according to this fact. He is probably going to have a wheelchair for driving only on steady asphalt topped road. Who the hell would buy a car or even take it for free, if you could drive it only steady roads around 3 months in the year?!

According to 15D Instrument choice of the suitable wheelchair can be 10 out of 15. For example it is been proven that sitting down too long periods of time is very unhealthy for any kind of person (HuffingtonpostMayoclinicNBC News). For this particular reason has been developed wheelchair models to be able to lift the person in standing position, which helps keeping the intestine and circulatory system functioning and the bone structure strong. Dear health care decision makers who disagree with me, I want to challenge you to sit down 16 hours per day during one month. After this I wish you to think deeply, how it would feel like sitting like that everyday in the rest of your life? You are making these decisions everyday for someone else.

A good wheelchair makes it possible to move also outside home. So why is that so important and has nothing to do with the quality of life? You walking health care decision-maker, what all this would be taken away from you: your job, friends and possibility to go to grocery store, beach, cinema, fishing, summer cottage, eating out with family and now and then meeting friends in pubs. Would you become depressed? 

I also argue that mental disorders and loneliness are serious things, which have effects on sleeping, anxiety, sexuality and even rehabilitation of any kind of sickness or injury. As far as I know the wheelchair users want to be seen as independent individuals and not only based of their disability, but thinking and feeling persons. Why this possibility for happy life is not offered to all disabled people in every country, but there are certain elite group of people chosen who gets the best wheelchairs?

We live now 2010 century, so should we change thousends of peoples' life and make the quality of life as a criteria of choosing a wheelchair? I think it is the one and only criteria of choosing a wheelchair.

Belinda's story

Dear Chasswheel, you bring me where my mind wants to go  Hi, my name is Belinda Monteran Leinonen (32), ...