Conscious Crafties is a new craft website for anyone living with chronic illness, disability or caring for those affected – a guest post from Karen Thomas


Conscious Crafties
Conscious Crafties

Conscious Crafties is a craft buying and selling website for anyone living with chronic illness, disability or caring for those affected. It’s built by a Spoonie for Spoonies. My name is Karen and after becoming sick almost overnight, I found my way to various support networks. I noticed that many of us turn to crafts to help distract from our illnesses and to feel useful again. Some of us can’t work, but we still have lots to offer the world! Seeing so much untapped talent, I had the idea of a community for everyone to showcase their work, in one place and give people a way of creating their own business. It was also a way for me to feel useful again, by using my skills to help others. Using some techie magic, I help everyones crafts get found by buyers and also post on our various social networks so items get seen by hundreds.  The website and our Facebook page has only been live for just over 4 weeks and already, we have almost 1000 likes. I’m passionate this is going to be something wonderful to help so many of us.

Stories are told:

Each ‘Craftie’ gets to tell their story on the site, to spread awareness in our ‘Meet the Crafties‘ section.  They can also ‘Add Friends’ within our community and send each other messages.

Here’s my story:

In 2011 I was perfectly healthy going about my workaholic lifestyle when BOOM! – I started fainting up to 10 times a day and my bed became my best friend. A year later I was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) a rare condition affecting the blood vessels and heart rate. There’s no cure, but reaching out to others with the same condition has been a huge help in learning to live with it.  3 years later I was told my POTS was caused by EDS (Ehlers-Danlos Syndrome) a connective tissue disorder affecting the skin, cartilage, ligaments & blood vessels – everything that holds us together! I also have some bonus conditions: fibromyalgiaraynaud’s diseasechronic pain syndrome,migraines and asthma. Life has been tough, but I’ve met some wonderfully strong friends who also live with chronic illnesses. Many have turned to craft to bring joy into their lives.  This incredible group of people are the worlds untapped talent.  Buying their beautiful handmade items (& mine!) will help to rebuild their lives.


How to get involved:

To join in the fun and start selling on ConsciousCrafties.com, apply here:

http://www.consciouscrafties.com/sell/

Buy beautiful handmade gifts here:

http://www.consciouscrafties.com/

Like us on Facebook:

https://www.facebook.com/consciouscrafties

 

Follow us on Twitter:

https://twitter.com/ConsciousCrafty

bTizzy.com – a new website for people with disabilities a guestpost from Vanessa López-Kopp


For the past year, we’ve been really busy.

bTizzy
bTizzy

Upgrading. Expanding. Shifting. Building. Facelifting. Renaming.
Some of you knew us as OUT OF STEP. We’ve shed that skin and are now called bTizzy. All the work we’ve been doing has put us in a, yep, you guessed it: a Tizzy. When we were brainstorming names, bTizzy seemed to best reflect the new direction we were headed.

More specifically, it has an attitude about it. What we are trying to do is shift the paradigm and existing perceptions about the disability community. We are leaving the pity party behind. We are embracing a more open dialog, fostering community, speaking to issues, passions and yes, frustrations, too: all the things that make up the diverse lifeblood of our population. And most critically, we aim to increase the economic power of people with disabilities (PWD).


Toward that end, bTizzy.com has an array of offerings that are about and for disability. A few highlights:

• K-TIZ RADIO. With four shows covering every corner of disability, we’re putting the mic in front of the movers and shakers as well as everyday advocates and heroes in our world.

• FORUM. We want to get people talking. And helping. Whether it’s finding a new apartment or a friend, the key is connecting.

• KNOW. This area is a vital resource for PWD. Legal, medical, events, relevant articles, it’s all here for you to know. And learn.

• SHOP. Products and Services by PWD have a new marketplace: bTizzy.com. Commercial success is critical to our success. And yours. Our goal is to level the economic playing field. To help disabled people become financially independent. To thrive.

We welcome you to stick around and check out the new digs.

We welcome your feedback. Post what you think about us, about the current state of disability, about your latest triumphs – whatever you are impassioned about — in our FORUM.

We welcome [and would be most grateful for] your social engagement online: spread the word, tell your friends and colleagues, post away. Communication is everything. We want folks to join the conversation. We’re at our best when we’re engaged.

We welcome you to bTizzy.com.

We welcome you to Get Into One.

 

bTizzy is a one-stop shop for all things disability.  From product and service offerings made by people with disabilities (PWD) to an extensive information hub featuring radio, community services and invaluable references, bTizzy’s ultimate mission is to increase economic opportunities and create positive social change for PWD.  

Join the conversation at: bTizzy.com

How often, if at all , do you use Facebook for health related or medical information and discussion?


Facebook for healthcare?
Facebook for healthcare?
As many of you will have picked up by now I am very interested in the whole area of social media and healthcare.

Obviously as somebody who runs a healthcare blog I axiomatically believe it to be a “game changer” as our American cousins put it.

But I’ve been wrong before , it will shock you to find, and I will be wrong again!

So to help we find out how we now use social media I am running a series of polls on the subject of which this is the first.

Today I’d like to explore the question “How often, if at all , do you use Facebook for health related or medical information and discussion?”

I’ve set up a poll below and it would be great if you could take part.




I’m also very interested in your views on privacy on Facebook. In particular on how this could/does impact upon your healthcare discussions on the site itself. It would be great if you could share your thoughts on this matter in the comments section below.

Thanks very much for your help on this matter.

Dystonia Awareness Week – Join the social media thunderclap and help raise Dystonia awareness!


Dystonia Awareness Week
Dystonia Awareness Week

Even you have visited this site before you will know that as well as promoting awareness of different health conditions I am also of the view that social media represents a game changer as far as healthcare is concerned.

This week is Dystonia Awareness Week and the organisers are organising a social media thunderclap to promote the week. I would urge all my readers to take part and help change the perception of dystonia. You can sign up below!


#

So what is dystonia? The excellent Dystonia UK describe it as follows. “Dystonia is an incurable neurological condition that affects around 70,000 people in the UK. The condition causes involuntary muscle spasms that force the body into disabling movements and postures. Dystonia can affect muscles in almost any part of the body, resulting in symptoms such as functional blindness, severe twisting of the neck and debilitating contortion of the hands. It can cause difficulties with movement, eating, talking, writing, reading and sometimes even sitting up. Pain and social isolation are also common.”

Finally can we suggest you have a look at Dystonia UK’s website here.

Thanks very much for taking part in the social media thunderclap.

Accident and Emergency crisis – is there an answer? Read our guest post from Zameel Panthakkalakath


Zameel Panthakkalakath
Zameel Panthakkalakath

As regular readers know one of the big interested of this blog is the use of social media and communications technology to improve patient care and outcome.  So we are delighted to present a guest post by Zameel Panthakkalakath which looks at the uses of smartphones as a way of dealing with the current A&E crisis.  What do you think?  Share your thoughts in the comments section below!

With hospitals reportedly at breaking point due to record numbers of emergency admissions, arguments rage about the root cause of the problems. And as the election approaches, chances of anything more than soundbyte analysis are becoming increasingly slim: apparently, with a sufficient dose of money and staff, all will be well.



What’s not well publicised is that in fact, spending on healthcare is continually increasing, and we’re not seeing the problems being solved. Public expenditure on the NHS doubled between 1997 and 2012, in real terms, yet we’re seeing increasingly poor value for money. The current A&E crisis is just one symptom of this. More cash will act as a sticking plaster providing temporary relief, but it won’t heal the underlying ailment – which is that healthcare delivery systems haven’t kept pace with advances in treatment capabilities and changes in demand. This makes for huge amounts of inefficiency and waste within the system, no matter how hard staff are working and how many hours they put in.

The good news is that the problems are fixable. By redesigning services and processes from scratch to reflect current day needs and incorporate new technologies, we can make resources go much, much further.

The A&E situation gives us some clues about where to start. In 2012-2013, 34.4% of patients visiting A& E received guidance/advice only. Before accusing people of going to A&E unnecessarily, it’s important to remember few people set off to spend hours in a hospital waiting room unless they are genuinely worried. What’s needed is a system that gives people practical alternatives. How many of these 6.3 million people could, for example, have been dealt with more quickly and cheaply had they been able to talk to a doctor over the phone or online?

Whilst some symptoms clearly need hands-on investigation, others do not. Computers and smartphones are bringing us a range of new ways to communicate that don’t require doctor and patient to be face-to-face in the same room. Ofcom figures, for example, show us that at the end of March 2013, 51% of UK adults owned a smartphone and that this rose rapidly over the year to reach a figure of 61% by the end of March 2014. Smartphones offer both internet access and the option to take and send high quality photos and video that doctors could be using for diagnosis.  A short phone or online consultation could very easily give people the information and reassurance they need at far less cost to the NHS than a visit to A&E would involve.

It’s time to look at radical infrastructure reforms that use resources more effectively and look forward to further advances rather than continuing to patch up old systems.  Reorganize the way we deal with non-emergency cases and we’ll achieve two very important goals. One, faster help for those non-emergency patients, and two, safer, high quality care from less pressurized emergency services for those who are in urgent need of hospital care.

 

Zameel Panthakkalakath is a healthcare entrepreneur and consultant committed to improving the patient experience through innovative healthcare delivery.

Having gained practical experience as a medical doctor earlier in his career, his focus is now on finding ways for healthcare services to improve efficiency and cut waste. He believes smartphone medical photography has a key role to play in this, as one of the many elements in emerging mobile health technologies.

He’s keen to share knowledge and help both patients and doctors make the most of the potential of smartphone photography for improved healthcare.

Connect with Zameel and iPhone Medical Photography:

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