Shocking findings from an inquiry by the All-Party Parliamentary Group (APPG) show “serious failings” in Sickle Cell care and evidence of negative attitudes underpinned by racism.
The report by MPs, led by Pat McFadden MP, highlights sub-standard care and treatment of patients with sickle cell disease (SCD), low awareness and education on the disease among healthcare providers, insufficient investment in sickle cell care, and evidence of racism.
What is Sickle Cell Disease?
According to the NHS, “Sickle cell disease is the name for a group of inherited health conditions that affect the red blood cells. The most serious type is called sickle cell anaemia.”
Sickle cell disease (SCD) is a lifelong hereditary blood disorder characterized by unusually shaped red blood cells, which can cause episodes of severe pain known as a sickle cell crisis. People born with the disease are at an increased risk of anaemia, serious infections, and other health problems.
SCD is one of the fastest-growing genetic diseases in the UK, with approximately 15,000 people living with the disease.
‘Serious Failings’ in Sickle Cell Care
The findings in the report by the All-Party Parliamentary Group (APPG) on Sickle Cell and Thalassaemia highlighted the following failings in care:
- Sub-standard care for patients in both A&E departments and general wards
- A widespread failure to adhere to national care standards
- Low awareness of SCD among health care providers and inadequate training
- Insufficient funding and investments in sickle cell care
- Negative attitudes underpinning racism
According to the APPG, these failings in sickle cell care have led to avoidable deaths and “near misses.”
During the inquiry, the APPG collected evidence from healthcare practitioners and sickle cell patients, including Zainab Garba-Sani, who offered a snippet of the harsh realities of sickle cell care. “Sickle cell is not something you can see. So I’ve had it in the past where I’m in the 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.”
Her cries are echoed by Kehinde Salami, founder of the charity SickleKan, who says “I could have a sickle cell crisis and be in considerable pain but choose not to go to the hospital because I know it’s just going to be a palaver in regards to explaining yourself and getting the treatment that you need.
“For me, it’s like Russian roulette going into hospital. You don’t know if you’re going to get good care or bad care and it’s something we’ve been fighting for years.”
In some cases, the “serious failings” in sickle cell care have led to avoidable deaths. One such incident reviewed by the APPG is the death of 21-year-old Evan Smith, who suffered a sickle cell crisis at North Middlesex University Hospital. Following an inquest, a coroner identified several failures in his care. He concluded that Evan’s death could have been avoided had a blood transfusion been offered sooner.
“I can’t believe we lost him just like that,” said his grieving mother Betty.
Evidence of Racist Attitudes
The APPG report showed evidence of negative attitudes underpinned by racism towards sickle cell patients, with the disease being more common among people with a Caribbean or African family background. Some patients recounted incidents whereby they were racially abused by health care professionals.
According to Pat McFadden MP, the group’s chairman, “This is a condition that predominantly affects black people and people living with sickle cell feel there is inequality in the way they are being treated.
“No-one wants to put one community above anyone else but they do want equality and treatment, and right now with sickle cell we don’t have that.”
Sickle Cell Society’s CEO, John James, has since come out to say: “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.
”If these failures affected the general Anglo-Saxon population there would be an outcry…We must do something. This has gone on for far too long.”
Improvements in Care for Sickle Cell Patients
With the failings in sickle cell care leading to “near misses” and patient death, there are calls among health campaigners and MPs for major improvements in care for people living with SCD.
The APPG report has put forward several recommendations including better training for healthcare professionals and increased funding for sickle cell research.
“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,” Pat McFadden MP said.
“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.”
A spokesperson for NHS England commented: “While specialist services are central to these improvements, it’s also important that each part of the NHS works with patients to improve ongoing care.”
The organisation has “recently overhauled the way treatment is delivered to patients with 10 new centres for sickle cell disease being set up across the country, including dozens of specialist teams.”
Compensation For Mistakes Made in Sickle Cell Diagnosis and Treatment
If you or a loved one received poor treatment associated with sickle cell disease you could be entitled to claim compensation. Whether the sickle cell disease was diagnosed late or mistakes were made in the care you received, our experienced medical negligence solicitors could help you obtain compensation for the harm that you sustained.