About the Author: Katie Clarke-Day

Katie lives with multiple long term health conditions and has always had an interest in enhancing quality of life for people living with long term conditions. Katie is on the C4PC Programme Board and is the Chair of the Co-Production subgroup.

24 February 2021

My name is Katie and I am one of 300 million people worldwide diagnosed with a rare disease; in fact I have been diagnosed with six rare conditions. As today is Rare Disease Day, I would like to share with you some of my experience of navigating life with rare conditions.

Having a rare condition impacts you from the very beginning; for me it took more than 10 years and countless visits to various doctors before I finally got my initial diagnosis. The day I was diagnosed was a huge milestone for me, as finally someone understood me, and could label my pain. There were tears of relief and, for 24 hours, I was floating on air. Very quickly, however, the reality set in. I did my research and I quickly learned that it was a highly disabling condition and hard to treat. The reality is that, just because we had a diagnosis, it did not mean that the rest of the world understood me any better.

Family, friends, employers, colleagues, strangers, GP, pharmacists, physios, the DWP, paramedics and A&E consultants, amongst others, have all struggled to understand the condition. The treatments and the ways in which I manage and monitor my conditions are not part of a standardised plan that is easily recognisable in general medicine. At best this is frustrating and, at worst, life threatening.

I understand that not everyone will have heard of my conditions but I would appreciate it if those around me would value the time and effort that I have taken to become an expert in me, my conditions and my treatments.

After multiple visits to A&E, one of which saw me sent home, only to end up re-admitted just 48 hours later – the start of a week-long stay in a high dependency bed – I was given the opportunity to work with the lead consultant in A&E to develop a care plan. The plan clearly specifies the course of action on any subsequent visits, including the tests I need, the treatment course to consider and some of my more common complications. Alongside advice from other specialists, we agreed the threshold for calling an ambulance based on symptoms that I can monitor at home with a simple pulse oximetry, blood pressure cuff, blood sugar monitor and thermometer. Paramedics were particularly grateful that I was able to provide relevant information so together we could make an informed decision about my care. This led to reduced hospital admissions.

I have become the expert, not just in my own conditions, symptoms and treatments but in how to communicate this knowledge and expertise to others – allowing me to become a partner in decision making. This was very much an uphill battle with rare conditions but it is so crucial to develop a plan that is beneficial to both myself and valuable NHS resources. I have much more control, autonomy and time thanks to the personalised care I have been given, a key reason why I’m so enthusiastic about C4PC and our goal to make personalised care the goal for everyone.