Man ‘racially profiled’ after pulling over during agonising sickle cell crisis

The report found evidence of sub-standard care for sickle cell patients admitted to general wards or A&E, low awareness of sickle cell among healthcare professionals and clear examples of inadequate training and insufficient investment in sickle cell.

The findings come as no surprise to Alex Luke, an engineering student based in west Yorkshire who has had sickle cell disorder since birth.

Alex tells Metro.co.uk that he has experienced repeated incidents of poor care and treatment that he believes to be influenced by racial biases.

One such experience that sticks in his mind is when he was driving and he had a sudden acute sickle cell crisis – which causes ‘unimaginable pain’.

‘I was unable to continue the journey, so I parked safely on the side of the road and reached out for medical assistance to help me control the unbearable, crippling bone pain,’ says Alex.

‘I was helped onto a wheelchair and into the ambulance after around 30 minutes of waiting. The paramedic asked to see some form of ID before he would give me any medication. Luckily, I had my driving license with me and so I complied.

‘But this made me feel alienated, and the whole situation came off as hostile and insensitive.’

Alex says this was just the beginning of a terrible experience. He says staff at the hospital he was taken too had very little insight into his condition.

‘They even ignored my medical care plan and said it simply “wouldn’t work at this hospital”,’ he adds.

‘I was labeled as “drug-seeking” when I asked for stronger pain medicine. At this time I felt like a drug addict rather than a normal person seeking the right medicine to help me overcome agonising chronic pain.’

Sickle cell disease is an inherited blood condition which predominantly affects people from African and Caribbean backgrounds.

The main symptoms of sickle cell disorder are anaemia and episodes of severe pain. The pain occurs when the cells change shape after oxygen has been released. The red blood cells then stick together, causing blockages in the small blood vessels.

These painful episodes are referred to as sickle cell crisis. They are treated with strong painkillers such as morphine to control the pain.

The new report by the all-party parliamentary group (APPG) on sickle cell and thalassaemia, led by Pat McFadden MP, revealed negative attitudes towards sickle cell patients, who are more likely to be people with an African or Caribbean background, and evidence to suggest that such attitudes are often underpinned by racism.

The inquiry also found that these concerns have led to a fear and avoidance of hospitals for many people living with sickle cell.

Care failings have led to patient deaths and “near misses” are not uncommon, leading to a cross-party call for urgent changes into care for sickle cell patients.

Among the most notable of cases reviewed by the APPG was the death of sickle cell patient Evan Nathan Smith in North Middlesex university hospital in April 2019. An inquest found that Evan’s death would not have happened were it not for failures in the care he received.

John James, CEO of the Sickle Cell Society, comments: ‘The inquiry’s findings are appalling but will sadly not come as a surprise to many people who have found themselves in need of urgent medical help for the symptoms of sickle cell.

‘This report is an urgent call to action and should be a turning point that addresses these serious failures of care and secures long overdue improvements.’

The inquiry is the first of its kind as it featured oral evidence sessions with testimony from expert witnesses including sickle cell patients, patients’ carers and family members, clinicians and representatives from relevant healthcare bodies and over 100 submissions of written evidence from key stakeholders.