I felt I might have been able to help other patients moving forward by helping staff see treatment for a patient's point of viewExpert Patient: Sarah Eales
I believe that you need to recognise that these aren't just patients, but people with feelings who need to be given a voice and listened to.Expert Patient: Daniel Clark
To be able to work with staff was great instead of just going to a unit where they are there to treat you. We had the time to really listen to each other. I found it very interesting that I could get together with some other renal patients and dialysis staff and talk about things from both patient and staff perspective. I feel like we all got a lot out of the course as one whole group of people.Expert Patient: Sarah Eales
Watching the response from the staff and listening to them converse with patients was great. It is so important to listen to the patients and know how they feel.Staff Facilitator: Vicki Ness
I noticed a few members of staff felt they could not express themselves enough in case it upset the patients.
Creating resources to benefit other patients
During the study days on the Shared Care course early in 2020, time was set aside for the attending patients to work on the Shared Care poster project. The content of the poster 'By patients- For patients' was a result of learning from conversations and discussions with patients and staff both on the study days and through homework staff were given which involved asking what their patients thought.
With all of us having different journeys through renal failure we were able to draw on different experiences to help really get the right message across. We were also fortunate enough to have the input from many nurses during the meetings.Expert Patient: Peter Gill
It was relaxed and fun working with other patients, sharing our own personal experiences and knowledge. It is important to involve patients as we are the ones who this is aimed at so know what we want to see and the information we need to hear.Expert Patient: Daniel Clark
The Design Challenge
The shared vision of the patient group was to create a resource that would encourage other patients to get involved in Shared Haemodialysis Care.
"We wanted to design it in such a way that was not complicated yet spoke a thousand words, to reflect our journeys and positivity. We finally agreed on something that represented personal development, strength, uniqueness and beauty. Striving for greater knowledge, wisdom and new experiences, The Tree of Life! This encompassed all that Shared Care represented.- Expert Patient Colette Acosta
It was important that we did not over complicate the poster because people would not engage with it. We wanted to make it appealing and easy to understand. We decided instead of leaves we wanted hands with the tasks written inside them. The hand was to represent either the patient's or nurse's hand. Alongside the nurse we wanted a small banner which displayed the words home haemodialysis; this was the recognition of progression if desirable.
Another important thing we wanted to include on the poster were the benefits gained by partaking in some level of Shared Care. We felt that these desirables we overlooked and not known by many patients and by adding them to the poster, patients could see just exactly how rewarding it could be.
We know how daunting and overwhelming it may feel but by working as a team your whole outlook and perspective will change and be far more positive"
The patient group had clear objectives to use the final poster to support their own home units' Shared Care programmes but also to provide a resource that would demonstrate the impact of patient involvement in its design.
I am hoping that the poster will help at Salford by showing that patients are involved within shared care and that the staff are taking notice of our first-hand knowledge.Expert Patient: Daniel Clarke
I feel that the poster will help both patients and staff see the difference doing any sort of shared care. It's not as daunting as it may first seem.Expert Patient: Sarah Eales
Our hopes are that it will encourage more patients to get involved with Shared CareExpert Patient: Sarah Eales
Making a difference
Working 'with patients, for patients' is a rewarding experience for staff and patients alike.
I have been in my role training patients aspects of shared care for 8 years now and it has developed from just training to more involvement in other things such as promoting and helping patients understand the benefits. I find my role very rewarding and as a patient I can empathise with the patients and understand how they may feel.Expert Patient: Daniel Clark
We have found having a patient involved in shared care can help ease the fear and anxiety some patients may have and that it has helped some patients who were refusing to take part, rethink and get involved.
One of the things I tend to notice is that some patients are more open to listening to someone who has first-hand experience of what they are dealing with which opens the door to listen to information regarding shared care. Being involved is nothing but positive.
Involving patients as experts has influenced how staff listen to their patients which has resulted in stronger partnerships. Just as importantly it has benefited the patients who have facilitated this process.
We felt we wanted to give something back after the time, money and patience spent on us, and to also feel like we had a purpose.Expert Patient: Colette Acosta
Telling my story and it being taken on board by the staff made a difference to my well-being.Expert Patient: Sarah Eales
Please download the poster and display it to support your own Shared Care programmes. It is important that it remains unedited but don't let that stop you from getting your own patients involved in other similar initiatives.
Rogers, C. (1957) The necessary and sufficient conditions for therapeutic personality change. Journal of Consulting Psychology, 21, 95-103. DOI:10.1037/0022-006X.60.6.827