A groundbreaking inquiry into sickle cell disease has found “serious care failings” in acute services and evidence of attitudes underpinned by racism.
The report by the all-party parliamentary group (APPG) on sickle cell and thalassaemia, led by Pat McFadden MP, found evidence of sub-standard care for sickle cell patients admitted to general wards or attending A&E departments.
The inquiry also found widespread lack of adherence to national care standards, low awareness of sickle cell among healthcare professionals and clear examples of inadequate training and insufficient investment in sickle cell care.
The report notes frequent disclosures of 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.
In preparing the report, the APPG took oral and written evidence from sickle cell patients and healthcare. Among those to give evidence was sickle cell patient Zainab Garba-Sani. She said: “Sickle cell is not something you can see. So I’ve had it in the past where I’m in hospital in absolute agony and someone’s said, you don’t look very ill. I think a lot of patients with sickle cell are therefore scared to go into hospital because they wonder whether it’s going to be a battle and if they have the energy to face the harsh realities.
“I remember there was one time I went to A&E and I had this black nurse and she was lovely. She came up to me and said, ‘I know you have sickle cell and I know your pain is probably pretty high right now, but the doctor won’t prescribe you anything stronger. I’ve already told them that this is not going to be enough. But let’s see anyway.’ And, it wasn’t enough. But that delay they took just meant that I was in pain for much longer.”
Garba-Sani hopes the report is a catalyst for change that patients desperately need and leads to better care and accountability.
McFadden said: “This is the most comprehensive report on sickle cell care that our all-party group has ever published. It has shown us that while people living with sickle cell generally had high levels of confidence in specialist haematology departments, there was a big gulf between this and the experience of A&E departments and generalist wards.
“One of the key findings in the report was the lack of communication between these two areas when treating people with sickle cell. This, along with tragic and avoidable deaths, has caused a serious and damaging impact on the levels of trust in the health system among sickle cell patients.”
John James, the CEO of the Sickle Cell Society, said: “The APPG 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.”
