Self Care Week 18 – 24 November

Kidney Care Community Leads the Way in Promoting the Benefits of Self Care

Self Care is an initiative encouraging people to keep themselves well and manage their health conditions by sharing responsibility for their health and wellbeing with their clinical team. Not just about knowing what to do when you have a bout of ‘flu, self care can be appropriate for people living with long term conditions who, by developing the knowledge, skills and confidence can take action to improve their quality of life and have a positive impact on their health and wellbeing. The kidney community has been working in this area for a number of years and patients are benefitting.

Professor Martin Wilkie and his team at the Sheffield Kidney Institute (part of Sheffield Teaching Hospitals NHS Foundation Trust) led a Health Foundation supported care programme across the UK encouraging people to develop their skills to participate and share in their own haemodialysis care (known as shared haemodialysis care). By offering people who need kidney dialysis several times a week at the hospital the choice, support and training to undertake tasks for themselves, their lives are improved.

“Participating in my care means a better way of life for me and my family. It has given me better understanding so that I know what is happening during my dialysis and that helps me control my diet and fluids better. I have become much more confident and am less anxious than before. It has definitely improved my life.”

Nicholas, dialysis patient

Evidence shows people who take back some control of their condition, not only have better outcomes, but visit their GP less, rely on emergency services less and overall have fewer days in hospital when they need to be admitted. Scaled up, this approach to patient centred care has the potential to revolutionise the way we respond to long term health conditions and manage their impact on people’s lives.

It is important to recognise self care isn’t for everyone, but for those who make the choice to learn about their condition and to participate actively in managing it, there are significant benefits.

We have found that many people are keen to learn how to manage their own care. Patients participate and learn at their own pace starting with simple tasks while developing their understanding and confidence. At first the thought of undertaking tasks normally carried out but the health care team may be overwhelming to a patient, and yet with support and by starting with small steps, people learn as much as they are comfortable with, gaining mastery over time and taking back control.

Professor Martin Wilkie, consultant nephrologist

Jonathon Hope has had kidney disease since he was a teenager. After two failed transplants he pushed to do his own dialysis at home and to manage his condition himself as much as possible:

It was the foundation stone of my re-taking control over my day to day life in the face of kidney failure. I felt less like a patient and more like a normal, healthy person! I felt both liberated and energised and developed the confidence to explore other self-help approaches to improve my quality of life as I learned to manage the vast array of symptoms that often accompany dialysis. To my astonishment, I discovered techniques that improved my mental, physical, emotional and spiritual well-being. In time, all symptoms eased and disappeared and my visits to hospital, A&E and my GP fell dramatically – by around 75%. I regained a quality of life that would literally have been unimaginable to that young teenager.

Jonathon Hope, home dialysis patient

Enabling people to understand aspects of their own care is a more equitable way to care for them, giving them the chance to learn about their condition and increase the opportunities for self-management. Engaging in self care benefits the individual, their families, and society as a whole.

The Renal Association has a long term commitment to improving patient care and experience through patients’ involvement, and we continually explore opportunities to increase patient activation. We strongly support encouraging wider adoption of self-care development across the community.

Dr Graham Lipkin, President of the Renal Association and Consultant Nephrologist

To find out more and about Self Care Week 2019 visit the self care forum website here.

The full blog by Jonathon Hope on his experience of self care is available on the KQuIP website here.