The wegohealth HAChat on Tues June 5th was a really weird one. Health Activism and Health Technology.

Being an American run and based support network and community for a variety of health illnesses and conditions, its really hard getting involved like I want to because I am in the UK. Now, there is nothing wrong with the heath care system that requires a major shake up – and I am in no way saying that I wish the NHS was different or stating that it is fine how it is, its all just my opinion – but having been a patient in a suburban hospital last year, I know the current system.

I’ve never spent a great deal of time in the hospital before my Crohn’s attacked me. Nor did I pay attention. But whilst being there last Autumn into Winter, I paid attention. It was effective towards my needs. And being a young adult I could advocate for myself when I wanted and needed to. However, the lack of information or the ease of technologically advanced methods of communication is servering lacking.

I sat watching all these conversations and tweets occurring, discussing their consultants and medical support staff using new technology to interact with patients, and vice versa. I don’t know if it is because there is level of contribution toward the US health care system that provides for laptops and tablets and the such, but there is nothing like that here. I can’t even get an application for my phone that would let me keep a diary on the Crohn’s symptoms along side my dietary requirements. It’s baffling and frustrating how far behind we are in technology.

There is the argument of course, that why isn’t pen and paper good enough?

It is. I use it myself. But I am constantly finding not enough time or space to do anything with it. Like leaving my diaries at home. Or forget an important conversation..  my phone is always to hand. I rely on it alot. I would like some integration of my Crohn’s into my phone. I attempt – badly – to get this blog onto my phone; failing most of the times that I do. I have to move on technologically in order to achieve this. And yes, it is just me, but why can’t that start to happen in hospitals and clinics here in the UK? I would love to see the junior doctors or registrars have my complete medical file on a iPad. I’d love to be able to share my ‘at home’ experiences with my consultant through the Internet. But we must start small and simple – in order for any of that to occur, I want more time with my consultant, period.

I know it’s asking for alot, but when it comes to managing and accepting and supporting long term illnesses, there needs to be an advance in the way we communicate. I deal with my disease on a daily basis and I am honest about its guts and gore. Surely, some honesty would occur on the other side of the table too? That there is nothing to feel shy about, it is a daily battle that will happen for many more years to come. Get over the embarrassment and embrace it! Help yourself by advocating more, by pushing for more, by wanting more.

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