Category: CF Tools

Medical record folders & pre-clinic prep forms

We haven’t met as a parents group for a while but I’m still getting a lot of requests for the medical records folder we set up some time ago. So much so that I thought I’d post it here again for those of you looking for the information.

This medical record folder is for you and your child. It will help you to take ownership over your child’s medical records so that you can be certain and accurate about your child’s medical history; what’s worked in the past and maybe even some notes of reflection as to why you or the medical team think something worked or didn’t work as well as you’d hoped.

Remember, although your doctors are experts in CF, you are the expert when it comes to how CF manifests in your child. And if you’ve just been diagnosed and you’re not an expert yet, you soon will be. It helps if you can be as descriptive as possible in your notes so you can compare symptoms and treatments from one exacerbation to the next. So try and fill out as much as possible each time. The doctors will keep their own notes but you will get to know your child’s health better than anyone. The best CF care comes when doctors and patients work together as true partners. As you go along this journey you will realise that there is never any one “right” way to treat anything – cystic fibrosis or otherwise.

There are many good opinions and many terrific doctors whose opinions differ on important topics. You will see this if you go to the conferences and read some of the medical literature on the web. The terrific thing about you taking responsibility for your child’s medical records and reflections / symptoms is that you will collect a bunch of insights along the way which are relevant to your child, and that is priceless. Remember the old English saying… “Opinion between good men (or women) is knowledge in the making.”

Keep on top of your child’s medical history and record your own notes & reflections about their experience with CF. Share it with your care team and participate actively in the discussions with your care team about your child’s care.

The notes you write in here and the discussions you have as a result of them, will be knowledge in the making.

 

You can download the inserts we created here: CF Medical Folder Setup

And don’t forget about the pre-clinic preparation pad to help you make the most of your time with your CF clinicians.

 

If you have any questions (or feedback), feel free to give me a shout.

 

Cheers,

Jen

Like a hands free nebuliser?

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“At MakerHealth we believe in democratizing the tools of health making around the world. Whether it’s a hospital bed, smart pill bottle, or an improved triage mobile phone app we believe that design should be transparent, hackable, and enabling for everyone to be the designers and makers of their own healthcare solutions.”

Like all industries, health is being disrupted every day by changes and progress in technology. It brings people together, it democratises the flow of information and research,  it  empowers  all parties and with this increased degree of transparency and accountability comes the human urge to connect and to share. To seek out others who might understand where we’re at. To crowdsource ideas and to create community solutions. Maker Health is doing just that.

We believe everyone can be a medical maker. In a world where health care technology is increasingly black boxed, and unaffordable, we found a stealth community of innovators working around the clock to make health better, by making their own devices to make us better.

I recently met up with another mother at the North American Cystic Fibrosis Conference and like all speakers who spark the mind; I stalked her online and found her blog 66 Roses but also a great post where, faced with the prospect of endless nebuliser treatments and hoping to find a solution to a hands free nebuliser, she crowdsourced the idea on Twitter, got back a load of responses and posted it herself on Maker Health to help with others.

Good share.

John Hopkins’ CF research review

If you’re looking to keep abreast of the latest research on key topics, the John Hopkins CF Centre in the US publishes a regular newsletter called e-cysticfibrosis review which basically publishes a peer review of a whole bunch of research into critical care topics.

It’s set up for medical care teams to subscribe to but anyone can join it. They’ve just done a brief summary of pseudomonas research and treatment protocols for anyone who is interested.

If you’re keen, you can sign up here  e-cysticfibrosis review

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