End of Life Care
Always Events and End of Life Care
The Trust has undertaken a focused Patient Engagement project to better understand the experiences of patients on an end of life pathway of using 999 services. A large part of this project has involved speaking directly to patients, their families and carers.
As a Trust we have been humbled by your honesty and openness in sharing your stories, we know for some it was a very emotional experience and we would like to offer our sincere thanks to you for engaging with us. We are aware that you will not have received any follow up from us and I wanted to assure you that the work we did together has been considered seriously and has been taken forward by the Trust. I am writing to you therefore to update you on progress.
Following the feedback we received during the hospice visits, online contact and during interviews, we identified a number of common themes. These themes are the issues you raised most about your experience and those you saw as being the most important. The area that came up repeatedly was communication, including feeling informed and being treated with care, dignity and compassion. You also spoke to us about the anxieties you experienced, expressing that each episode of contact with 999 brought about fresh fears for yourselves and your loved ones. We also heard you speak about anxieties regarding ambulance delays. Further concerns were raised regarding gaps in commissioned services, for example patients who needed to move rooms within their own home. It was particularly emotive to hear families speak of their loved ones having had “a good death” and praising our staff for their compassionate care.
This information has been shared with our Directors group with recommendations based on what we have heard from you, these are:
1. Music: Crews will be supported where possible to play music of the patient’s choosing. We have heard you speak about the way in which this seemingly small act of kindness has meant so much to you and your loved ones, allowing some relief and often bringing everyone some joy during a difficult time.
2. Re-route where possible/asked: The Trust will support crews where possible to re-route, where there is no immediate risk to the patient, if they ask to be conveyed via a specific landmark where this is unlikely to impact the journey time significantly. For example, in some cases, patients have asked to see the sea for the last time, crews will be supported to comply with the patient’s last wishes.
3. Compassionate communication training: The Macmillan Cancer Care team deliver Compassionate Communication training to student paramedics in their first year, the Trust will consider repeating this training in year 3. This training will also be considered as part of the rolling mandatory clinical training for frontline crews.
4. Identify unmet need with CCGs: The unmet needs identified through this work with the CCGs will be shared with CCGs to ensure that patient safety and care risks are addressed. This is already taking place through the work being carried out by the Macmillan Cancer Care Team.
The Trust has supported the recommendations however the implementation has been delayed with the national crisis around COVID-19. This has meant that these actions have been temporarily placed on hold whilst we ensure our patients and staff are safe. However I wanted to assure you that your feedback has not been forgotten, once the Covid-19 situation improves we will ensure that we take forward the recommendations
Thank you once again for your openness, honesty and candour and if you have any questions, comments or concerns please don’t hesitate to contact me directly on email@example.com. I hope you are all keeping safe and well.
Patient Engagement Manager