How did you feel when you first started dialysis?
I was scared, I didn’t understand anything. I was spoken to about dialysis before I started but I still didn’t quite understand how I was going to feel when my blood was going around the machine.
I had been to visit a local satellite unit but I didn’t feel I would be comfortable there and it looked a bit old. I cried when I knew I was going to be that person on the bed as reality set in. When I did start my treatment, it was on a different unit which felt better as it was bigger, brighter and more modern. After I had settled in, the staff kept saying I should move to the satellite unit as it would be better for me because it was nearer. I didn’t want to go and I felt a bit pressured. I was worried I wouldn’t like it and then I would be stuck there. I was just getting used to where I was and I felt safe and secure. I knew I was ok at the bigger unit.
What didn’t you like about the time you spent in the dialysis unit?
My blood pressure was high when I was on dialysis. I just used to lie there watching the clock ticking by waiting and worrying about having my blood pressure taken again. It made me feel really anxious. I was frightened about the size of the needles and the pain. I’m not squeamish but the whole process was scary. All the tubes, being in hospital three times a week and all that made me feel that I must be poorly. I didn’t feel like that before I started. There was nothing to like about coming to hospital but I got used to it. I didn’t like the transport; I was first to be picked up and last to be dropped off and I was in that ambulance a long time. There were delays, and sometimes transport didn’t turn up when I changed my days. I didn’t really like to ask for things. I had no choice about the whole process but I just had to get on with it.
How did you get started doing shared haemodialysis care?
I saw other people doing their blood pressure and temperature and I thought, so this is what happens and I followed the trend. Other patients helped with showing me how to put the cuff on. One in particular helped me by just being nice, supportive and reassuring. However, the dialysis unit environment didn’t feel very calm, it was always stressful and rushed and made me feel on edge. When the nurses were under pressure, I felt under pressure. They could make it easier if they encouraged people to do more for themselves. Initially it might take a bit more time but it’s worth the investment. I think the staff prefer you to be the ‘patient’ because they know what they are doing then. It’s easier for them to just do it for you. My impression was that if I wanted to learn, it would slow them down. They say how much they have to do so I didn’t want to give them extra pressure.
When I did shared care it made me feel more useful and not a burden.
There were a few nurses who encouraged me to think about needling myself or going home but I was not receptive to start with until I started to get really fed up of being on dialysis. I was tired of not having a social life and I wanted more flexibility. The home dialysis team suggested that I could have a trial in their area. The atmosphere there was so much better, not rushed but relaxed and calm. I liked it so much that I behaved as though I was serious about going home so that I could stay there. Gradually I began to learn more because it felt so relaxed and I didn’t feel the pressure anymore. I got on well with the staff because they wanted me to learn. I knew where to find everything and I was given things to do for myself including needling. They said “Get that out of the way first”. I then learned how to do everything else until I was completely independent. Other patients learning then came and watched me. I used to tell them that I was just like them at the start. The staff kept suggesting home but I felt it would be very different there and was daunted about being on my own, however, I knew they wouldn’t have suggested it if I wasn’t competent and capable. They had trust and confidence in me which helped me feel better.
What is it like for you now that you have moved from shared care to home haemodialysis?
I have my independence back and I can pick and choose the days and times that suit me to dialyse. I don’t need to worry about transport and it’s more relaxed with no pressure. I can needle myself and I am confident and happy to do that. The only downside is I feel a bit isolated sometimes.
I want to share my experience so that we can improve things for other patients. I felt nervous talking to staff at first but if telling my story can help another patient, nursing staff or consultant then I am more than happy to do it.
What steps did we use to build your confidence to work with staff and help tell your story?
Firstly, I sat in the audience and listened to an experienced patient telling their story on the shared care training course. Another time I was asked to contribute to a few questions during the shared care course whilst sitting in the audience. When I was ready, I was interviewed alongside another patient where we answered questions about our experiences before I was confident to do this alone.
What would your next steps be?
- Telling own story without prompts
- Using different presentation styles to get the messages across
- Interviewing another patient
- Facilitating with others on a group exercise
- Leading on a group exercise
- Presenting at a conference
Why are you passionate about helping patients and staff talk about improving care?
I want to give something back!
I have had good care and felt a sense of belonging. Staff were so nice and caring but there are things, when I am looking back, that could have improved my experience. By telling my story to staff, they will understand and be able to take it back to their units, reflect on what I have said and share it with others to make even a small change that will help other patients.
I feel like I owe a debt because of the time and money spent treating and caring for me. It’s about being respectful and showing I am very grateful. been a struggle but I have had good support from different people.
It gives me another purpose! I am a person with skills to share
I am not just a dialysis patient and it doesn’t define me. It did when I was going to hospital because I had to go in at certain times and it was difficult to change shifts to fit with my life. Being involved more makes me feel like I am making a difference, whether it's to patients or staff. When I first started sharing my views on the training course, I was taken aback to hear how useful this was to others and the impact it had. I put myself in the position of more experienced patients who were speaking and I thought they can do it and that really made me feel that I could do it too. I still feel like an imposter but I am an expert in me. I’m in the best position to talk about how things feel to me and healthcare professionals have the knowledge about the medical side. By being involved it means we are working together.
It helps with my own personal growth and outlook, making my disease work for me not against me
I look at life differently, count my blessings and try to stay on the positive side. Learning and being involved has taught me a lot. It’s helped with my assertiveness and confidence.
I can help on a larger scale which gives me more confidence and opportunities. It’s like a ripple effect. I want to keep challenging myself more. It feels uncomfortable but the more you challenge yourself, the more growth there is. I can do bigger events, conferences; take it to other areas of health care. I wouldn’t have thought I could do this at the beginning. I want to do what Tania does but for patients. I have skills in teaching from work at the recovery college, as a gym trainer and from doing the Certificate in Education. When I am involved, talking about it and doing this, I am excited but when I am not, I lose it a bit. It would be nice to be involved more on a regular basis and maybe as a job.
Being offered different opportunities to gain experience with the course, has not only helped with my own thoughts and feelings about shared care but it has been very important for my own personal growth. This gives me the courage and confidence to feel able to work with patients, to help them with their thoughts and feelings which will hopefully put them at ease, giving them the confidence about their treatment and take some control back.