An inquiry into sickle cell disease has found “serious care failings” and evidence of racist attitudes.
The report, led by the all-parliamentary group (APPG) highlights the shocking care and treatment of patients with the disease.
Sickle cell disease is a hereditary blood disorder which can cause episodes of excruciating pain, called a sickle cell crisis, and can be fatal.
What did the inquiry find?
The No One’s Listening Report, led by MP Pat McFadden, found sub-standard care for sickle cell patients in general wards and A&E departments.
The inquiry found low awareness of sickle cell disease among health care professionals as well as inadequate training and insufficient funds in sickle cell care.
It was also revealed these concerns have caused many sickle cell patients to avoid and fear going to hospital.
Such failings have led to patient deaths and “near misses”.
The inquiry noted negative attitudes towards sickle cell patients with an African or Caribbean background and such attitudes are underpinned by racism.
A cross-party call for urgent changes into care for sickle cell patients has been made in response to the shocking findings.
How was the inquiry conducted?
To prepare the report, the APPG took written and verbal evidence from sickle cell patients and healthcare professionals.
Sickle cell patient Zainab Garba-Sani was one patient to give evidence.
Speaking to The Guardian, 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.”
Ms Garba-Sani recounts her experience in A&E and hopes the report leads to better care for sickle cell patients.
She said: “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.’”
Ms Garba-Sani added that the “delay they took just meant that I was in pain for much longer.”
What has been said?
MP Pat McFadden commented on the report’s findings.
He said: “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.”
Mr McFadden highlighted the key finding from 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,” he added.
Healthcare professionals must “listen to the people who were born with this illness, who’ve grown up with this illness,” Professor Dame Elizabeth Anionwu, the first sickle cell and thalassemia nurse specialist in the UK, told Sky News.
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.”
A spokesperson for the NHS said NHS England have “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.
“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."