A groundbreaking inquiry has found ‘serious care failings’ in the care of sickle cell patients and evidence of attitudes underpinned by racism.

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.

Just like Evan, Alex recalls a time when he felt so desperate and helpless that he was forced to call 999 and request an ambulance – when he was already in a hospital bed.

‘When I was admitted to a different ward, the right treatment was delayed beyond any reasonable or acceptable degree,’ Alex tells Metro.co.uk.

‘I waited for more than three days without the right pain medicine being administered and often the nurses provided me with just paracetamol. This is the same as taking paracetamol for a broken leg after a severe fall.

‘What makes my situation worse is that the bone-crunching pain never goes away, the pain only intensifies, and more complications surface – such as seriously low oxygen levels, one can barely walk without passing out. This is what made this situation very scary. I get thinking about what might happen should my endurance completely run out as a direct result of insufficient specialist care and medication.’

After three days of agony, Alex felt he had no other option than to call for help.

‘Out of extreme frustration and deficiency in brain function at that moment in time, the idea of calling for an ambulance came to mind as I thought to myself – perhaps the ambulance could just take me to a different hospital or perhaps a specialist ward somewhere,’ says Alex.

‘Unfortunately, even after speaking to the emergency service; I was informed that there was nothing they could do and that the hospital is the best place to be. 

‘The fourth day came and I decided to discharge myself, taking on the risk of using up the bare minimum of energy I had left.

‘I called the taxi but the driver was so worried about my state – as I couldn’t even sit properly but just fell on the back seat – so the driver did not go anywhere. Instead, he reached out to nearby police who put me in a wheelchair back to A&E where I received gas pain medicine.’

Alex’s traumatising experiences have led to a complete breakdown in trust – and he says there is an urgent need to overhaul how sickle cell is approached and how patients are cared for.

‘I have extremely fragmented confidence as a direct result of fragmented treatment and care towards those with this chronic disorder,’ says Alex.

‘Some areas are well-equipped to manage and care for those with this incurable illness, but others are surrounded with stigma especially as the medication needed to overcome the intense crippling pain is often controlled and can only be administered by senior professionals in a clinical setting.

‘The sad reality is that even ‘’senior professionals’’ often lack an in-depth understanding of the complex nature of this illness – hence the need for specialist wards and awareness is an urgent necessity.’

He says medical professionals need to understand more about the impacts of this illness, and to have more compassion for those who struggle with the chronic effects of the condition.

‘Even a simple gesture of sympathy could save a life,’ says Alex.

‘There is an urgent need of a general reform through the whole healthcare system in managing and treating people affected with this disorder. Awareness is of utmost need – not only in a clinical setting but in the community as a whole, due to the complications that arise from this disorder.’

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. 

The State of Racism

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