On March 16, 2021, Tyrone Airey packed a bag to go to Northwick Park hospital in Wembley. Having suffered from sickle cell disease since birth, it was a journey he knew all too well. Usually, he would receive medication to ease the excruciating pain, before eventually discharging himself. This time he did not come home.
Tyrone, 46, died of cardiorespiratory failure after being given a toxic dose of morphine. A coroner later ruled that his death was “contributed to by neglect”. Nurses were found to have “insufficient training” to care for Tyrone, and he spent nearly three hours on the haematology ward without receiving a patient-controlled analgesia (PCA) pump, an essential tool for managing the extreme pain caused by a sickle cell crisis. A subsequent investigation by the Health Safety Investigation Branch (HSIB) found that staff on the ward were not trained at all in the use of the device.
Tyrone was a “jovial, passionate” person who lived and breathed music, according to his mother Lorraine. He had discovered a hidden talent for singing in his 30s that kickstarted a burgeoning career as a soul singer and producer, and he went on to collaborate with UK garage legend Booka T under the alias Tai Malone.
“We had a very deep connection, often we would talk all night. Even when we were both silent, I would look at him and know what he was thinking,” she told the Standard. “I was blown away by his voice. It made me so proud to see him use his creativity, because it was difficult for him to hold down a job with his illness. I always used to tell him: ‘just do things that make you happy’.”
Sickle cell disease is a genetic condition that causes red blood cells to form in an abnormal, “sickle” shape. Symptoms include severe pain, an increased risk of serious infections and anaemia, which causes fatigue.
The disease is particularly common in people from an African or Caribbean background. Patients frequently complain that a poor level of care in the NHS reflects structural racism, with staff dismissive of the concerns of black patients or lacking the necessary knowledge to treat them. In the 1950s, newspaper reports claimed that migrants had brought sickle cell into Britain. This racist fearmongering fuelled a culture of silence around the condition which endures to this day.
“When Tyrone was a child, I would notice a lot of prejudice when he was treated in hospital,” Lorraine said. “One of the main problems is that sickle cell patients are labelled as aggressive. I believe it affects the level of care. To know that Tyrone didn’t have to die, that it was due to negligence, is the hardest part.”
Tyrone’s experience of not feeling listened to as a patient was not uncommon. A damning report published by the Sickle Cell Society in 2022 found that black patients “often reported being treated with disrespect” and felt they were “not treated as a priority by healthcare professionals”. This in turn damages trust in the health system as a whole.
Sickle cell did not define Tyrone’s life, but sometimes the pain was unbearable.
“It would rip my heart out every single time he was in pain. It’s not something I could ever get used to,” Lorraine said. “I felt powerless. The only thing I could do was bring him to hospital. For even the hospital to become a kind of torture for him… it just wasn’t acceptable.”
Her biggest fear as a mother was her son becoming “deeply depressed and unable to come out of it because of his condition”.
“It was a very limiting condition in some ways, and often we never knew what would trigger a crisis," she added. "It made him frustrated and angry. But he still wanted to live his life to the fullest.”
Pippa Nightingale took over as chief executive of London North West University Healthcare NHS Trust (LNWH), which manages Northwick Park, in February 2022. After assuming the post, she reached out to Tyrone’s family and made it her mission to open a dialogue with the sickle cell community.
“There is always a family behind these tragic cases and I wasn’t sure they had been engaged with as well as they could be. When tragedies happen, sometimes the questions come months and years later," she told the Standard.
“Lorraine has been amazing and so brave. She has really worked with us to improve care for other patients and the sickle cell community.”
Before the Covid-19 pandemic, the Trust had a specialist day service for sickle cell patients at Central Middlesex Hospital. But as the NHS came under intense pressure, this was closed as part of efforts to tackle the virus. This meant that Tyrone was being cared for on a ward with no specialist staff.
“It made us set up our hospitals in a different way. Only afterwards do you realise the consequences for other patients and we were too slow to set them back up,” Ms Nightingale said. “Could we have got these services set up better and communicated this better with the sickle cell population? I think we could.”
Since Tyrone’s death, the trust has held engagement events which allow NHS managers to listen to the concerns of patients and discuss future improvements to services. They have also appointed a sickle cell consultant and a dedicated sickle cell consultant. Nursing teams in all wards across LNWH hospitals are now given extensive training on sickle cell and pain management control.
Ms Nightingale hopes that the Trust can lead the way in addressing health inequalities in London, which are caused by a complex interplay of factors including deprivation, environment and a lack of culturally sensitive care. A survey commissioned last year by the Black Equity Organisation found that almost two thirds (65 per cent) of black people had experienced prejudice from doctors and other staff in healthcare settings.
“We care for the most diverse population in north west London and have the biggest sickle cell population," Ms Nightingale said. "I work at an organisation where 72 per cent of my staff are BAME. Therefore I have a responsibility to ensure that I am providing equitable healthcare services for patients and staff."
She added: “Are we institutionally racist in the NHS? Yes, we probably are. And if you were a sickle cell patient you would feel that we are because they struggle to access healthcare. It’s not intentional but it is a lack of knowledge and understanding that has caused it. We need to educate the public and the sickle cell population need to see that we are advocating for them.”
Lorraine's grandson, aged eight, also suffers from sickle disease. She has vowed not to stop campaigning until sickle cell patients receive the care in the NHS that they deserve.
“These are the same complaints that we have been battling for 40 years. That is why I can’t take my foot off the gas,” she said. “I don’t want my grandson to be 48 and be having the same conversation. I can't allow that to happen.”