Present: Tim Thompson, Nancy Verdin, Judi Bell, Henri Lalonde, Jack Dobbs, Jessica Dill, Joanne Peterson, Scott Arbeau, Rachel Lewis
Apologies: Juli Finlay, KaytlynnSoroka, social worker 1 and social worker 2
In General
Again lots of energy and enthusiasm in both meetings. I will work harder as the facilitator next time to make sure everyone has equal opportunity to contribute to the discussions as they want to. As is the nature of this type of group, things will come to mind in between meetings as we reflect on the discussions and the actions we have taken. Feel free to let me or Kaytlynn know about these things or make a note for the next meeting. Similarly, let us know if there are things about the meetings that could be improved upon (i.e. better facilitation). It is better to capture these things as you think of them.
Potential new members
We had 2 new members Joanne Peterson who is a nurse practitioner and Scott Arbeau who works in dialysis management. I think if they are willing and able to commit to our group on an ongoing basis, their input will provide some breadth to our knowledge and experience base.
Similarly, I have invited 2 social workers who I think would also compliment the group. They were unable to attend this time, but hopefully next time.
Group details/contact information
All members of the group present agreed to share contact details with each other. I will attach this list and update it as new people join.
I have included Kaytlynn’s email address, she does not yet have a telephone, but we will update this. I am going to ask permission for her to use my work telephone as I think she will be more adept at setting up an answer machine message and answering your calls.
Action learning set – information people want when starting dialysis
Our first action learning set meeting was productive in moving forward. We had decided for the pilotto focus our efforts on a ‘Welcome wagon’ and/or a patient directed information package for people starting dialysis. The action from the last meeting was for people to review information packages from other units, some were easier to find than others, some were better presented than others. Judi found the pre-dialysis information pack from the Kidney Foundation very useful and still refers to it now 10 years later. She was unaware of the second booklet that relates to dialysis modalities. There was a suggestion that there is enough educational information available and patients do not need any more facts about dialysis and/or information booklets.
What is not necessarily so readily available or consistent, is the patient focused ‘introduction’ to dialysis when patients present for their first session, and the welcome by individual staff members. Relatedly, there appears to be an inconsistency in information and support provided by the nurses on the unit. Comments were made about how unwelcome the waiting room is. RL suggested as part of our focus on the Welcome Wagon we can look at the physical environment of dialysis using ‘The First 15 steps’ toolkit First 15 Steps this includes what is expected of staff members.
NB. RL on reflection, I think we should still develop a patient directed ‘what you need to know when starting dialysis’ booklet, video clips, etc. We can include things in response to what you needed to know or didn’t know when starting dialysis.
Planned and unplanned starts to dialysis
The other point that was brought up that is very relevant to the information received, is whether people had a planned or abrupt start to dialysis. We need more information in this area and I will ask my contacts.
Action
PiKS patient members agreed to jot down what they recollect about the information they received when starting dialysis. What was good about it, what was less good, what was missing. Was the timing right i.e. was it too early/too late, was it too much information or not enough. Also people were going to make a note about how they felt starting dialysis and what their personal experience was, who allayed their fears and how did they do so?
Some members of the group felt that some of the individuals in their clinical team were falling short in their professional roles. They were asked to jot down some specific examples of this. I will find out if there is any information related to the responsibilities of this professional group in relation to people receiving dialysis.
Committee meeting
Wider influence of group
Some discussion about using the group to create outside pressure on decision makers. This is definitely something we need to consider for the future. I think for the purposes of the pilot, our primary aim should be to impact the patient experience. Towards the end of the pilot we will revisit sustainability and spread.
Ideas carpark
Some discussion of pre-dialysis population, missing patient voice, patient and family involvement, potential for patient conference with SCN and AHS, role of the Kidney Foundation of Canada, ‘tsunami’ of CKD and what strategic arrangements were in place to deal with this, public awareness of CKD and prevention.
I think these are all of interest but lie outside the remit of this group at present. It is important not to spread ourselves too thin at this stage so I think we should continue to focus on dialysis issues. In addition, I am positive that work and research is happening in all of the above areas.
Action
I am making ongoing inquiries around whether or not there is a patient charter (for dialysis) or a strategic vision or plan for dialysis services
Slot Swap
Still an area of interest to the group. Nancy clarified that dialysis provided outside of the province does incur a cost to Alberta Health Services. Nancy has lots of experience dialyzing elsewhere and will compile a list of information required by sites accommodating visitors. It would be interesting to know whether there is a record kept of the number of transient refusals for dialysis. May suggest a commercial opportunity (Nancy talked about the government providing dialysis facilities for Japanese military. Possibility of an elective slot swap site.
Website – Agreed domain name <Dialysisxchange.ca>
Kaytlynn is in the process of developing this website, some discussion about what to put on there. The committee will have the opportunity to review the website and to offer suggestions before it goes ‘live’. Kaytlynn will be the administrator along with an invited patient (we have asked a younger patient for obvious reasons).
Some suggestions regarding the promotion of the website
In the PiKS newsletter, which comes out quarterly, email, via a link on the Kidney Foundation Website, social media, vista print with website details, posters in waiting rooms and clinics.
Peer support
This is a recurring theme, not just for patients but for families. People thought that partner and family support should be independent of patient support. I think this should definitely be a topic for our next open forum (April 2018).
Nancy’s suggestion for peer support
NV. My ideas/format for the waiting room education/support include;
energy conservation
stress management
pain management
coping with kidney failure
building a support net work
personal directives
mental illness
Each session would include handouts, a presentation on how to live with kidney failure using each topic as starting point.
I have taught so many of these classes I would like to teach these in our waiting room classes. I thought they could be enhanced with bulletin boards, additional hand outs and certainly 1:1 sessions for those that might ask for them.
I thought that coming for a day a week , arrive the evening before, teaching all three shifts, 4 if available and then leave the next morning.
RL. I really like this idea and I think Nancy is the ideal person to run this for the pilot. I am wondering about sustainability and spread and wonder if we should ask for a couple of volunteers (patients) to work with you on this. This would mean if you were unavailable someone could stand in, but would also help in the ‘spread’ of such a program after the pilot period. I will look at what support/permissions we would need for such a program
Open Forum: Transplantation Thursday 30th November 2017
We have been making some preliminary inquiries into venues, format, speakers etc. We should know more by the next meeting.
NEXT meeting dates (provisional)
31 August and 28th September 3.30-5.30 pm
Action learning set: Optimizing information sharing for people starting hemodialysis
31 August and 28th September 6.00-8.00 pm
PiKS Committee meeting
Actions prior to next meeting
- Recollections of starting dialysis, how you felt, how you were treated, what was good, what was not so good, what could have been better
- Biographical paragraph about yourself for website– it would be good to know your dialysis history and about hobbies or any fun facts about you etc. You can submit your own photograph or have one taken at the meeting
Happy actioning details of the next meeting will be sent out the week prior, please let me know if you want to add to the agenda, you can also do this in person at the meeting.
PiKs Meeting 1 summary 27 July2017