Shaun’s story: ‘ICU - But not as we know it!’

​Shaun’s story is continued from our PPI Patient story page here

Access to Care for Shaun

Following admission to the local hospital, three days passed before Shaun was transferred for surgery. According to Shaun, the tertiary centre “wasn’t convinced they could take me, but they eventually took me in the end and two doctors accepted responsibility to do the surgery”. While three days does not appear a protracted length of time, this was life on hold for Shaun’s family. Shaun describes the experience as “a huge battle” from the start of the journey, getting to surgery and later to rehabilitation to optimise living with a life-changing injury. Gaining access to rehabilitation for Shaun meant spending a year in hospital before transferring to a UK hospital for a nine-month stay. Gretta campaigned for this access for Shaun, knowing it was important to his longer-term holistic living. This was complicated by multiple administrative challenges.

In order to return home Shaun required a home care package. The renovated family home was ready. However, further delays were encountered. Plans were made on a care pathway for potential emergency readmission to his local hospital. A home care package had to be agreed and granted. Frustrations were many during the 300 days, requiring patience and the onerous task of filling out lots of forms.

Shaun’s experience is borne out again and again. Delays in ICU admission and discharge are discussed within this report in Chapter 6. Research by Smith and Synnott (2017) illustrates that valuable healthcare is wasted when patients with traumatic spinal cord injury cannot move seamlessly from one area of care to another and can impact negatively on the quality of care for patients. This is eloquently described by Shaun and Gretta in their story.

Patient-Centered Care for Shaun

There were many difficulties faced in accessing and delivering the care that Shaun required. Gretta expressed the need for Shaun’s rehabilitation to be part of his holistic care, which was “important for his mind”, and the advantage of seeing other people living with paralysis ‘living a very good life’.

In preparation for the return to his local hospital, an assessment of Shaun’s care needs was made. Relevant staff were trained to facilitate Shaun’s return, firstly to his local hospital and ultimately home. Gretta greatly appreciated the local staff travelling “to be trained up specifically in Shaun’s care”. A home care agency was engaged to look after Shaun at home. The local ICU staff trained the home care agency nurses regarding Shaun’s care needs.

Maintaining Shaun at home is supported by the peace of mind of knowing that he has an immediate care pathway to the Acute Medical Unit in his local hospital and onwards to ICU there, when required.

Core tenets of patient-centred care are access to care as required, individual assessment of care needs, and delivery of that care (Phelan et al., 2017). Shaun’s story as outlined illustrates delays in access to care required. This is counterbalanced later in Shaun’s story with the establishment of a care pathway allowing him immediate access to the local hospital from home. Staff were trained to meet Shaun’s care needs, and home care packages were delivered. Care was built around Shaun, enabling him to live at home with his family and attend university. While Shaun truly experienced a patient-centred approach to care, it was also fragmented. Patient-centred care as a priority in the health system is underpinned by the principles of dignity, compassion and respect (Phelan et al., 2017). The honesty and caring nature of the staff in the ICUs was appreciated by Shaun and his family.

Psychological Support for Shaun’s Family

Shaun’s story illustrates the high emotional needs of family members due to their heightened levels of distress. They describe the feelings of uncertainty in not knowing the surgery outcome. In addition, they describe feeling nervous, not being heard, and also the honesty, the compassion, and reassurance from the hospital staff at the various points of care; in particular, the nervousness during the surgery and the honesty afterwards. Gretta talks about the importance of being heard, for healthcare staff to listen “to the patient and family perspective” and to create an opportunity to ensure the best outcome for patients like Shaun.

Shaun and his family recognised a gap in support for families of critically ill patients. They describe the fear, uncertainty, and powerlessness of those days in the ICU waiting rooms. They recommend early support for families, in the form of advocacy groups stepping in where healthcare is lacking, and the ICU waiting rooms displaying information on services available. Gretta now works with an advocacy group to support families in the same situation, reassuring them that “their thoughts and feelings are perfectly normal”.

Lower satisfaction for emotional support replicates what is in the literature. Care and caring in the ICU is described as satisfactory by the family members regarding the patient’s care, but lower satisfaction is expressed in the emotional support for families (Carlson et al., 2015).

Clearly, this story illustrates a gap in psychological care for the families during the ICU stay of patients with life-changing injuries. Truly, this is an issue that needs to be addressed. Who will take on the responsibility of providing this essential support? Will it come from advocacy groups or the care provider?