When Lorraine Airey’s son Tyrone was just four years old, he was diagnosed with sickle cell disease.
He took medication daily and most years he suffered several sickle cell crises, which caused excruciating pain in his back and chest, and often had to be admitted to hospital.
Sickle cell is a disorder where red blood cells are misshapen and often block blood vessels and fail to carry oxygen around the body – so Lorraine knew he faced a lifetime of hospital treatment.
But she says she never expected the NHS care given to Tyrone would one day contribute to his death.
Yet that’s what happened last year, on March 17, when he was accidentally overdosed by poorly trained hospital staff.
Now a coroner has ruled there was neglect, which contributed to his death and is recommending urgent changes at the hospital where Ty was treated.
And the Airey family aren’t the only ones grieving. A recent national report highlighted more avoidable deaths and care failures nationwide for sickle cell patients, who are mainly of Afro-Caribbean heritage.
“Despite his health problems, Tyrone grew up into a loving, handsome, funny man,” says Lorraine, 63, a training manager from Chadwell Heath, East London.
“He remained fiercely independent, working as a jewellery designer and a soul singer under the stage name Tai Malone.”
In March 2021, Ty suffered another sickle cell crisis and was admitted to Northwick Park Hospital, North London, where he’d been treated many times. Lorraine rushed to his side but by the time she arrived, he’d already died.
“It was a terrible shock,” says Lorraine. “Ty had come through so many crises in the past. Now he was gone.”
Ty was just 46 when he died.
However, when Lorraine went to speak to staff about why this episode had been so tragically different, she says she couldn’t get any answers.
“They seemed evasive and either couldn’t or wouldn’t answer my questions,” says Lorraine.
“The only difference I could see was that the specialist unit where Ty was previously treated had recently closed and this time he was on a general haematology ward.
"Mother’s instinct told me something had gone terribly wrong with his care.”
The hospital invited Lorraine to a meeting after which the managers started a serious incident investigation and an inquest was launched.
In October 2021, a hearing was held at Barnet Coroner’s Court.
The coroner heard Ty was prescribed morphine for the acute pain common with the disease. But a PCA pump used to deliver his pain relief was wrongly set up.
Ty received toxic levels of medication and died from cardiac arrest caused by a morphine overdose.
A serious incident investigation report by the hospital trust found the standard of care provided with regard to observations and monitoring fell significantly short of expected standards and there was a “failure to rescue” when Tyrone’s condition deteriorated as a result of the excessive amounts of morphine.
“Over the years I sometimes thought Ty’s care was sub-standard,” says Lorraine.
“There were times when he was offered paracetamol when he needed morphine, or was made to wait ages for the correct treatment, prolonging his distress and pain.
“But I never imagined NHS care would kill him.
“Ty wouldn’t have died if the pump was set up correctly, monitored adequately or action was taken to save him when he deteriorated.”
The coroner ruled that his death was contributed to by neglect, recommending the hospital make improvements within 28 days, ensuring all staff were fully trained on sickle cell disease treatment.
Since Ty’s death, Northwick Park Hospital has also reinstated its specialist sickle cell unit, and extra training for staff has begun.
Last autumn, an inquiry by the All-Party Parliamentary Group on Sickle Cell and Thalassaemia called for major changes in care for sickle cell patients.
A report, No One’s Listening, was issued by the APPG and the Sickle Cell Society.
It included evidence showing there was widespread lack of adherence to national care standards and that awareness of sickle cell among healthcare professionals was low.
The report also highlighted negative attitudes towards patients, with evidence suggesting this could be underpinned by racism, due to the percentage of sufferers with an Afro-Caribbean heritage.
Patients reported often being treated with disrespect, not being believed or listened to, and not viewed as a priority by healthcare professionals, even when urgent care was needed.
Lorraine has now launched a legal investigation into Tyrone’s death, hoping to improve the care provided to sickle cell patients.
“Ty was effectively euthanised, pumped with too many drugs, left without acceptable observations,” says Lorraine.
“It was the kitchen staff who raised the alarm that he was unresponsive, when they noticed his breakfast was untouched.
“In my opinion, the previous sickle cell unit at Northwick Park Hospital was disbanded without due diligence nor proper planning for what would happen to sickle cell patients afterwards.
“Many people in my community suffer with sickle cell disease, and I don’t want the same tragedy to happen to any of them.”
Dr Jon Baker, chief medical officer at London North West University Healthcare NHS Trust, said: “We offer our sincere condolences and unreserved apologies to Mr Airey’s family.
"We have carried out an internal investigation into the care and treatment Mr Airey received and fully accept his care fell below the standards we would expect.
“The Trust has taken on board all the concerns raised by the coroner along with recommendations to learn from what has happened to Mr Airey and prevent it from happening again.”
Lorraine is represented by law firm Leigh Day who are investigating a possible clinical negligence claim.
