“Abandoned”, “isolated”, “alone” were just some of words shared by survivors and their families, following an episode of critical illness requiring intensive care. Not only did the patient not know the person they had become, families didn’t recognise the relative they brought home. These recovery stories were shared following attendance at our post-intensive care rehabilitation programme, InS:PIRE some 3-6 months after hospital discharge. We, as professionals always believed that leaving intensive care was something to celebrate. However we now know, having listened, that patients and families leave with unwanted physical, psychological and social consequences that result in their feelings of abandonment despite best ward care. Over the last 5 years we have catalogued similar patient and family journeys. This resulted in our application to the Realistic Medicine Value Improvement Fund to support the introduction of a Recovery Co-ordinator. We no longer wanted our patients and families to feel isolated and alone. We wanted someone to accompany them on their journey, to normalise the feelings and emotions. To signpost timely resources, to point to a world of similar patients with shared experiences, and maintain connections. Since receiving the successful funding in October 2019 we appointed two Recovery Co-ordinators, developed our improvement plan and we got to work. We were in position by February 2020 where we were improving our discharge process from the ICU, we were visiting the patients on the wards, keeping in contact with family members and beginning to identify the patient- and family-led concerns and hurdles to recovery. And then COVID-19 hit!
Similar to all ICUs globally we saw up to a 250% increase in demand for ICU care. To provide skilled ICU nurses at the coalface we had to lay the Recovery Co-ordinator role down to provide emergency care. This was truly an exhausting and traumatic time. However not all was for loss! During this time we established a connection with the Intermediate Care Team, a multidisciplinary community-based rehabilitation team. We formed a relationship whereby we could connect ICU patients and families on hospital discharge to their care. Providing physical and social support greatly improved their recovery journey. By August 2020 we were rekindling the Recovery Co-ordinator role, unfortunately having lost one of the two nurses in the role on the way. And then the second COVID-19 wave hit in October!
It was very much a case of Groundhog Day! A 300% increase in demand for ICU care at the peak, the role was laid aside again and Christmas came and went without much of a breath for air. January saw the largest increase in ICU demand and memories from this time are scant but mostly are around tight fitting FFP3 masks and our own staff’s psychological wellbeing!
We are now in March 2021, we remain at 150% provision of ICU care but we can breathe! We have re-established the Recovery Co-ordinator role again with new vigour. We are currently looking to appoint a replacement Recovery Co-ordinator. With the acquisition of new digital technology we are liaising with family members via videocalls. We have delivered three virtual InS:PIRE programmes and we are trying to support our, now many, intensive care survivors and their families, to recover to the best of their and our ability. Connections with the intermediate care team remain and are blossoming. Without the Recovery Co-ordinator role I don’t believe we would be in the poised position that we are currently. The role may have been absent at times but the driving force of the staff to see patients survive to thrive was always present.
Some additional YouTube videos of our work: