Knowledge is Power

by Tracy Johnstone, Chair Board of Trustees

In my working life, prior to the youngest little man arriving early, there were always a few people in the office that hoarded information, kept it to themselves and only ever shared it when they thought it would gain them personal kudos – sometimes this worked and sometimes this didn’t, but mostly it annoyed others as the information could have been used by the team much earlier and solved a problem.

I’m not one of those, I’m a data nerd, I crave information, data, reports and spent much of my previous working life in the Oil & Gas industry, collating, managing and creating data for all sorts of projects – I also love excel! The girls in the Charlie House office despair at my spreadsheets, forms and information hungry mind.

Since Louis arrived on the scene and turned our world upside down, information has never been more important. It is fundamental to us making decisions on his care, his treatment, his future and to make his life however short or long, the best it can possibly be. Unfortunately, getting the right information at the right time and at the right pace for us to suitably digest it all is a real challenge, especially when a curve ball such as bad news is being delivered.

But knowledge is power, it gives you the power to understand your situation, the power to make decisions and the power to feel in control of the rollercoaster ride that you are on, if only slightly. The people that I have learnt the most from since Louis arrived are other mum’s and dad’s in a similar situation to us. Those that have been through it have many of the answers that we are searching for in our desperate attempts for knowledge to help us feel in control. I would be rich if I had a pound coin for every time I have heard a parent with a disabled child say “I never knew that”.

So, unsurprisingly one of the aims for Charlie House in the next five years is to enable better access to information for parents who have a child with a life-limiting condition, whether that be signposting to a charity that supports a specific condition or an information leaflet on tube feeding or tips on where to buy a particular item. We are hoping that over time our knowledge base will grow, families will gain knowledge, share their knowledge and everyone will benefit with the power to help themselves.