ESTHER Cafe- Elaine's Story
The series of ESTHER webinars continued on 18th November with a digital ESTHER Café, via Microsoft Teams, working in co-production with Mary and Bex from Maidstone based Phoenix Support. Our ESTHER at the Café was Elaine, who shared her experience of living with Parkinson’s Disease through a pre-recorded video, due to not being well enough to participate directly at this time. Elaine shared her experience of not being listened to, having to frequently repeat details of her condition and prescribed medication to professionals, varying levels of understanding about Parkinson’s Disease amongst professionals and medication errors while in hospital. Elaine also had much praise for her consultant and questioned the delay in being able to access treatment he had prescribed.
At each webinar an element of Universal Personalised Care is considered, with Supported self-management being the chosen subject for 18th November. This is very much in line with how Elaine has managed her condition and would like to continue to do so, given the right support.
At the Café participants were divided into break out groups, to simulate the table-based discussions that would normally take place at an ESTHER Café and asked to consider:
- Which aspects of ESTHER’s health and care experience worked well for ESTHER?
- Which aspects of ESTHER’s health and care experience did not work well for ESTHER?
- Top three improvement actions to feedback at the Café.
As well as the improvement suggestions, participants expressed how impactful Elaine’s story was and agreed that there needs to be much more awareness of Parkinson’s Disease and other conditions. The outputs from each break-out group were shared and discussed as follows:
|Top 3 Improvement Suggestions Group 1
||Top 3 Improvement Suggestions Group 2
||Top 3 Improvement Suggestions Group 3
1.Consultant to arrange
fitting of canula on same day of Consultant Clinic appointment, to eradicate waiting period for this.
2. All professionals involved
with Elaine’s care to have access to the single patient record system, to minimise repetition when attending appointments with the different professionals and organisations involved.
3. Better joined up working
between all involved in Elaine’s care, with all trained in Parkinson’s Disease.
1. All professionals involved
in Elaine’s care to be trained in Parkinson’s Disease and more time to be available for listening.
2. Ensure there is continuity
of care, instead of long waiting periods.
3. Ensure that all care is person centred and based on listening to Elaine.
1. Care plan to contain a linkto a good information source on Parkinson’s Disease, so that all professionals accessing the care plan can be well informed and up to date with their knowledge.
2. Better communication in
place, regular checking in with Elaine. Communication to include family and carers depending on what is decided by the patient. Continue to build on trust through regular communication.
3. System wide solutions to ensure agreed treatment plans are not completely compromised by unexpected factors or events.
As Elaine could not participate directly at the digital ESTHER Café, the improvement suggestions were relayed to her by Mary and Bex from Phoenix Support. Elaine was impressed with the Café process and suggestions her story had generated but also responded with a challenge back to health and care services: “how can we ensure that professionals absorb and follow through on the suggested actions?”. This question is at the heart of the five levels of continuous quality improvement of the ESTHER Philosophy of Care and will continue be reflected to health and care services by the ESTHER Team.
As a service provider Phoenix Support are leading the way with a commitment to personalised outcomes in care and support plans, to really implement supported self-management, by including information that individuals feel is relevant to self-management of their condition. The ESTHER Team will be following up on other suggestions made, to see which ones can become a reality.
Going forward an ESTHER Café is planned for 2021 to continue with Elaine’s story, to see what has changed and to ask ourselves if we are doing what matters to ESTHER? – details to be confirmed in our February newsletter.