Mencap urges medics to improve care of patients with disabilities

BBC News

22-03-2025

Greater awareness is needed in how to treat people with disabilities after a man died in a hospital following complications from kidney dialysis, a charity said.Jordan Tooke, 30, from Norwich, died in August after a line from a dialysis machine became detached, causing an air embolism that triggered a fatal brain injury.Mr Tooke's mother, Camilla Tooke, believed her son had been subjected to discrimination at the hospital based on his disability and questioned whether doctors had done all they could to save his life. Jon Sparkes, the chief executive of Mencap, said: "All healthcare professionals should receive training to ensure unbiased decision making."
The Norfolk and Norwich University Hospital, which treated Mr Tooke, said: "We are committed to provide the best care for people with a learning disability and autistic people and to make adjustments when necessary to access the care they need."
Mr Tooke had Williams Syndrome - a condition affecting development - and autism. He was non-verbal and had learning disabilities.He was later diagnosed with chronic kidney disease and a Court of Protection order led to him being put on dialysis.During the inquest into Mr Tooke's death, Ms Tooke said following her son's embolism, "Dr Fletcher [the head intensive care consultant] said 'well, what quality of life does he have anyway?'"I knew the question of DNR [do not resuscitate] was coming, so I said: 'You can't ask me to make that decision,' to which he replied, "you won't make that decision. I will."At the inquest Dr Simon Fletcher apologised to Ms Tooke, claiming she had misunderstood his comments and that he had not acted in a discriminatory manner.
Dr Fletcher told the inquest he had intended the question to ascertain Mr Tooke's quality of life prior to the embolism, in order to assess whether treatment might have left him in a permanent vegetative state.He said: "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."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."
Mr Sparkes, from Mencap, added: "Jordan's family battled tirelessly to ensure their 30-year-old son could access treatment."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."No family should ever have to ask if the NHS is doing everything that they can to save their son."
Rachael Cocker, the chief nurse at the hospital, said: "Our deepest condolences are with Jordan's family following their loss."Our clinicians and learning disabilities team at NNUH worked closely with Jordan and his family to make adjustments to enable him to receive dialysis with the aim of him receiving a kidney transplant in the future."Our teams were devastated by Jordan's death and are committed to learning from what happened."The Oliver McGowan Mandatory Training on learning disability and autism has been embedded across our trust to ensure all staff have the skills to provide appropriately adjusted care for people with a learning disability and autistic people to reduce health inequalities."
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