Today (6 June) is ‘What matters to you?’ day. Here, Katie Clarke-Day gives her perspective on what really matters to her as someone living with multiple Long Term Conditions (LTCs).
What matters to me? An interesting question and one that takes some thought. In the ten years since my initial diagnosis, what matters to me has changed significantly. I used to rely heavily on the medical professionals around me, but it soon became apparent that a lot of the care I need comes from me and those closest to me.
My goal is to stay as well as possible and do as many of the things in life that I planned before these illnesses took over. It matters to me that I still get to be Katie, and continue to achieve the goals I set for my life, albeit with a few more hurdles!
What matters to me almost as much as this is that people recognise and respect the fact that staying well is often down to me and my wife to control. We carry out my day to day care for 99% of the time. It matters to us both that my neurologist and GP are respectful of this and trust us to manage my conditions successfully at home. This includes involving us in making decisions about treatments, as we are the ones who live with and manage side effects, or complicated drug regimens alongside our daily life.
It matters to me that the teams who provide my medical care are supportive and understand there are times, despite the best self-care, when we do need them. There are times where one (or both) of us is not coping well, and there are quite simply things we cannot manage ourselves, like treatment options or emergency medical treatment.
Initiatives such as NHS England’s developing Self Care Support programme demonstrate the organisation’s commitment to place more emphasis on the role of self-care. However, it is important that, as part of this, there is an accessible and practical support network available to myself and my carer.
I know that with the right support, self-care initiatives will empower me to manage my illnesses in a way that takes pressure off the NHS. For instance, fewer emergency visits and possibly even fewer routine visits. This needs to allow specialists’ time to put in place systems that support people who are living with LTCs and are able to self-care, allowing more time for those for whom this is impractical or even impossible.
It matters to me that people are aware this is not easy. Living with multiple LTCs, and the inevitable toll it takes on my family, is exhausting. It matters to me to be offered creative and innovative solutions to the day to day issues we face. We need extra support: we need more effective ways to communicate with the teams who care for us; we need to have systems in place to let us know when we need to seek medical help and where from, to name just two examples!
There are many medical and technological innovations that offer genuine opportunities to enhance the quality of life of those of us living with LTCs. I am grateful that NHS England’s developing Self Care Support programme is here to support and encourage such innovation and begin to address these things that matter to me.
Katie Clarke-Day is 36 and lives with her wife in Nottingham. She has multiple long term conditions (LTCs) that span medical disciplines. She left a career in health psychology and social work due to ill health but is now involved in multiple NHS England projects and is the lead governor of an NHS Foundation Trust. Katie blogs and vlogs to support others living with long term conditions, and has recently written about her ‘life in the long term conditions web‘.