Jordan Tooke, a dynamic 30-year-old with Williams Syndrome and autism, like many others, tragically lost his life this past August. He was being treated at Norfolk and Norwich University Hospital. His death occurred after a severe brain injury after an air embolism had formed. An alarm signaled that one line from the dialysis machine had come loose, which triggered an emergency shut-off. He was tied to it due to his chronic kidney disease. Although the air embolism did not cause the brain injury, it was deemed to have activated this fatal condition.
Jordan had just been discharged from dialysis as a result of a Court of Protection order. The hospital worked significantly with Jordan’s family to modify his treatment plan. Their ambition was to prevent him needing a kidney transplant when he’s older. Jordan’s family wants justice and accountability. The Jordan family has been vocal about their concerns. They wonder if medical personnel did all that they could to stop his death.
"He'd suffered a catastrophic brain injury and one of the difficulties of critical care is there are two difficult aspects; the decision of when people are going to benefit… and second is when enough's enough." – Dr Simon Fletcher
The Tooke family battled literally up to the last moment of Jordan’s life for him to get the treatment he needed. Their dedication certainly did not go unnoticed.
"Jordan's family battled tirelessly to ensure their 30-year-old son could access treatment." – Mr Sparkes
The emotional impact of these events has been devastating. What these campaigns have achieved is that they’ve ignited more widespread conversations on the need for impartial decision-making in healthcare systems, including for patients with LD.
"All healthcare professionals should receive training to ensure unbiased decision making and ensure all NHS providers are making reasonable adjustments so people with a learning disability can access adequate care." – Mr Sparkes
The hospital’s goal had long been the maximization of Jordan’s quality of life as measured by the eventual establishment of a medical intervention with that effect. Even so, his tragic passing has brought to light the great difficulty and dangers experienced in high stakes critical care settings.
"Critical care is not without real difficulties for the patient physically and psychologically so I always like to understand what the quality of life for the patient was before that and I was asking that only to establish, not as a judgemental issue." – Dr Simon Fletcher
