To mark Self Care Week and its theme this year of “Self Care for Life – Be Healthy This Winter”, Jonathon Hope shares his self-care experience of living long term with renal disease.
Fortunately, for most of us, the practical side of winter self-care is pretty straightforward: Putting a little money aside for the extra heating bills; getting our winter clothes out; where appropriate, getting a flu jab for ourselves or our young children; and stocking up on cold and flu remedies – just in case.
But for those of us with long term conditions, such as those of us with failed kidneys who are regularly having our blood filtered by a kidney machine or who have had a kidney transplant, the self care skills needed are of a totally different order entirely: especially over winter.
Firstly, you have the inflexible and draconian rules around what you can and can’t eat or drink, which, when surrounded with the temptation offered by Christmas food and treats, can make the Christmas and New Year period feel like a slow form of Chinese water torture. Unless the family chooses to cook two meals, this scarcity of taste or flavours can easily extend to your family too.
Secondly, those of us with transplants or on dialysis machines often have weakened immune systems. So no matter how many public places or transport systems you try to avoid, you face the near certainty of some form of prolonged cold or infection over the winter months – that is not always helped by medical care. If we are really unlucky, this can tip into a full blown chest infection, pneumonia or even sepsis.
Thirdly, for those of us on a kidney machine, we spend an average of six to seven hours visiting a hospital or a satellite dialysis unit every other day, a fairly dispiriting treatment to say the least. It can leave many with a range of daily and often untreated symptoms that can leave us tired, exhausted, nauseas, itchy or restless!
Fourthly, although figures vary, around a third of us with long term conditions, including those with kidney failure, experience mental and emotional health challenges that according to websites like www.patientslikeme.com, often top the list of most frequent and onerous symptoms.
So what can we do for those with long term conditions to help ease the disease and treatment burden that many will never escape, despite the best that medical care has to offer?
A long term condition sadly, as the name itself implies, for many of us is not just for winter, it is for life. Yet, mainstream healthcare only supports us on average, for around six hours a year – or in the case of people with kidney failure, around 6 per cent of our year. In other words, the greatest opportunity for improving outcomes for those with LTC’s is being systematically and consistently missed:
To support and empower us in the 94 per cent of time when we are on our own, often struggling with a huge array of unrecognised and untreated symptoms trying to eke out a Quality of Life despite our condition!
In my own case, I was incredibly lucky. Fifteen years into my own Long Term Condition, I met a truly remarkable clinician who helped me take a staggering step towards medical and personal self-care mastery: she introduced me to home dialysis – literally managing a kidney machine in my own flat!
In time, this radical self-care approach spurred me on to accomplish an extraordinary level of self care. I voluntarily increased my dialysis hours by 50 per cent, explored a range of community resources, from Nordic Walking to meditation that radically transformed my quality of life. The more I did for myself, the better I felt. I was astonished – why had no one ever told me this?
I managed to reclaim a better mental, physical, emotional and spiritual level of well-being that I could have ever have imagined before. The result? My admissions to A&E and hospital fell around 75 per cent.
Hence, for me, the most critical challenge the NHS faces this century is what validated, recognised, effective approaches are there to empower those of us with LTC’s when we are outside direct care? How can we learn the skills to keep ourselves as healthy and well as possible? What is the 94 per cent Solution?
Well fortunately, there is now a light emerging at the end of the tunnel as recently, UK charities and the NHS have started to explore ways of finding the 94 per cent Solution. Including more focus and support for self-care and self-management, peer support etc.
Contact: email@example.com to get in touch.
- Self Care Week runs from the 17th-21st It is an annual national awareness week that focuses on embedding support for self care across communities, families and generations.
Over the last 10 years Jonathon has chaired or co-chaired a number of national and local health care improvement projects, and has spoken widely on person centred care, self care, self-management, patient participation and activation
Jonathon was diagnosed with kidney failure in his teens – over 30 years ago. He experienced 15 years on dialysis, much of it on a kidney machine at home. He currently has a fourth transplant which is working well
Jonathon has recently been appointed as co-chair to a national programme looking at increasing activation and self-management support for people living with long term conditions.