The reality of living, for those like me with multiple long term conditions, is that self care is both inevitable and a vital part of our treatment. We don’t live in hospitals and we don’t have a home full of medical staff. We spend the vast majority of the time caring for ourselves, often with only the support of family and friends. The changes I saw when I took responsibility for my ‘self care’ for me were life changing.
This isn’t to say we are sent out into the world without information and support. I am so grateful for the expertise and experience of the NHS team that support me. My time with these key people in my life is limited, sometimes far less than I want or need. For me this lack of contact led to a need for quality time with ‘my experts’. That’s the first step to good self care for me, making the most out of the limited contact we have with health professionals who have full knowledge of our conditions and combining that with my own health goals and lifestyle expectations. For me, being proactive and assertive in those conversations gives me vital knowledge to have confidence in managing my illnesses. Not everyone wants to have these conversations, I need clinicians to understand that that’s a big part of what I need from a consultation to allow me to get by successfully until I see them again, a prescription simply isn’t enough.
I’ve used these interactions to better manage a life threatening illness in the last year. Firstly I had to become really aware of my illness and how it affects me, what triggers changes in it and how it responds to treatments.
I then took this knowledge of my own illness, my body and my skills to the doctors who care for me. For example, one of the main reasons I end up in A&E has been an issue with my heart rate. So I made sure that in one of my consultations with the cardiologist we talked about what he regarded to be a dangerous rate for me (as opposed to paramedics and A&E doctors that don’t know me) and what action I can take to monitor my situation and when to act and call 999.
That conversation, alongside other similar conversations about managing my symptoms, including staying hydrated and managing nausea, gave me all the knowledge and more importantly for me, the confidence to manage my symptoms at home more effectively. On a day- to-day basis my illness now impacts my life much less than it used to and even the extra time it takes each day to monitor my symptoms and do as I need to rather than as I want to is worth it! I have reduced my emergency admissions to hospital from 10 in one year to 0 in the last year! That’s 10 less 999 calls, 10 less ambulances, 120 hours less spent in A&E and 30 nights a year that I’m not spending in hospital each year. That’s nothing compared to the hours I have back in my life to use for living, not just surviving. I’m not cured, my condition is not notably better, I just manage it well!
Katie Clarke-Day, C4CC Co-production Team member