Course evaluations consistently quote that listening to patients and learning from other centres are the most influential factors to changing practice.
Whilst nothing is better than a live discussion, this series of short videos aims to provide what are often hidden insights shared by a group of patients.
These will help you, as healthcare professionals, to understand what is important from a range of patient perspectives. Use the adjoining practice work to reflect and guide you.
There are five videos to watch:
- How did I feel starting dialysis?
- How has shared haemodialysis impacted on my life?
- How can you help me to engage with shared care?
- Why don't I always follow medical advice
- Why do I want to help my fellow patients?
The people behind the patients in the video interview series
I am a mother of a beautiful daughter. I love to cook, spend time in nature and practise mindfulness.
I worked as a clinical facilitator in a Practice Development Unit with a strong passion to teach and share my knowledge. I am now "on the other side of the fence" but with that very same passion.
I am a 46 year old woman who loves life. My partner and family mean everything to me.
I enjoy swimming bowling and going the cinema. I also go to bingo once a week with my mam. It’s our quality time together.
Shared care has made such a difference to me. It gave me back control over my life. Speaking with other patients on the courses has made me feel like I am not alone in all the doubts and fear I felt when starting dialysis. So being able to reassure other dialysis patients and answer their questions gives me great satisfaction and a sense of purpose.
I am an active outgoing person with a positive attitude towards life. I am into high adrenaline activities and have done things like parachuting and abseiling for charity, I even abseiled down one of the renaissance hotels. I also have Multiple Sclerosis and unfortunately can no longer carry out the high adrenaline things but luckily my other hobby is being an avid gamer. Since a child I have always had one console or another and can just lose myself in my games.
I am married and my wife is also my carer to help me through the tough days. We want to start a family through IVF. Despite all the obstacles put before us we try to maintain a positive outlook on lives and work together to help each other and others around us where we can.
During my kidney journey I learnt how to take control of my renal health and how to self dialyse. After my transplant I wanted to put my experience to good use empowering other patients to get involved in their own care. I take pride in helping others and watching them grow and am a strong believer in giving everyone the opportunity to take part in their own healthcare.
A lover of words, music and food, outside work, I am an etymology enthusiast, a real foodie who enjoys cooking and eating foods from around the world and a good boogie.
I am a professional administrator with substantial experience in the public and private service sector. Currently I enjoy the versatility of my role as Parish Administrator of my Catholic Parish Church in London.
Because I value my freedom and independence, I dialysis at home and recently moved to night time dialysis.
I am a passionate, social individual, dedicated and driven to make positive change. I am married and have two amazing children and the most handsome dog ever. I work as a patient advocate and enjoy being able to provide the advice and support that I would have benefited from myself had it been available for me when I was younger and less wise. I love football, playing it and watching it.
I like watching films and I am a Marvel nerd. I have always enjoyed drawing and now regularly use that love through creative media design and social media promotion. I have grown up with CKD going from one treatment mode to another. One of the ways I am able to deal with my condition is by supporting others and recognising when they need a listening ear from someone who knows how it feels.
Because I value my freedom and independence, I dialysis at home and recently moved to night time dialysis.
I am a long-term CKD patient over 22 years. I have done peritoneal dialysis, shared care and home haemodialysis. I am a passionate advocate for patients getting involved in their care.
I am also a husband, dad and grandad of 7, 3 of my own and 4 step-grandchildren. My favourite hour of any week is the one I spend in a swimming pool where I'm teaching the grandkids to swim. I'm active in my local community and a highlight of my year is running our village scarecrow festival. I don’t work now but I have worked in retail, then as a lawyer before kidney failure put paid to that career. I then spent a few years teaching English as a second language but none of those jobs compare with being a grandad which is my favourite thing ever and I would never have never experienced any of it without dialysis.
Acknowledgements: The following videos are the work of Tim Hunt, who recorded, edited and produced the video series, and Tania Barnes who conducted the original interviews. Thank you to the patients who took part and shared their time, thoughts and emotions to create this valuable education resource.
Feedback
After you have watched the videos, please complete the survey with 5 questions to provide feedback to the patients and designers involved in the videos. You may wish to save your answers as part of your own reflection.