Gillian James, a former nurse, lived largely independently with progressive multiple sclerosis for more than 30 years. This film tells the story of the care she received in a number of settings during the last sixteen months of her life.This film was first shown at the NHS England National Patient Safety Conference on the 30th January 2013.
Murray Anderson-Wallace, who worked with the family to research and produce the film, introduced “Gillian’s Story” to the audience of 450 healthcare leaders by reflecting on the themes he felt the film raised.
“Firstly, I see a very real and complex story that provides us with vital insight about the hopes and expectations. I see solid data about quality of care – how safe it felt, how effective care was and what the emotional and practical experience was like for Gillian and her family – all rolled up into an immediately accessible human ‘quality dashboard’.
“Gillian and her family placed trust in their caregivers to do the right things on their behalf. They rightly expected that Gillian’s care would be co-ordinated and that communications between services and with them would be sensitive and careful. And, when at their most vulnerable, they expected very special care to be taken to ensure that they came to no harm. They assumed that they would be treated compassionately in times of crisis and with dignity at the end of Gillian’s life.
“I believe that these fundemental expectations were breached. I think that the bond of trust was broken and mistrust and fragility dominated the relationships. It coloured everything that happened thereafter and became the only lens through which action could be understood, by everyone involved.
“Secondly, I see a system that lacked resilience. A system without the intrinsic ability to adjust its functioning before, during, or after changes and disturbances, so that it could sustain reliable operations under both expected and unexpected conditions. Without that resilience the system was bound to fail and the people who worked within it, and those who relied on their services, would inevitably suffer.
“But a focus on the resilience of the system does not mean that individuals should not be held to account for their actions – it is not good enough to just blame ‘the system’. I believe that it is the social, moral and professional responsibility of all concerned – doctors, nurses, managers, policy makers – to speak up and say ‘This is unacceptable’ when they see such failings emerging. In fact, I would go further and say it is their responsibility to actively seek it out.
“Finally, this care system lacked responsive, compassionate leaders and that was probably its biggest failing.”