The in-depth study by Global Blood Therapeutics – carried out across 10 countries including the UK, US and Canada – shows that patients living with the illness remain dramatically underserved by healthcare systems, while healthcare professionals don’t feel like they have the knowledge of the disease or their patients, to properly treat them.
More than two in five (43 per cent) doctors and nurses cited difficulties due to having different ethnic backgrounds from their patients, it was revealed, while almost three quarters (73 per cent) stated patients of lower economic status can be more difficult to treat. Almost a third of healthcare professionals (31 per cent) found it challenging to understand their patients’ needs.
The experiences of more than 1,300 people people living with the illness, carers and healthcare professionals, were examined throughout this research – conducted between September 2021 to February 2022 – published ahead of World Sickle Cell (22 June). 855 were patients, 207 carers and 219 health care professionals.
Sebastian Stachowiak, Head of Europe and GCC at Global Blood Therapeutics, told The Independent that the survey “confirms the lack of options for physicians” and expressed hope that, with recent advances in available treatment, patients can be better served in the future.
“Sickle cell disease and its complications are associated with a life expectancy that is reduced by approximately 30 years, compared with developed country averages,” he said.
“The disease was discovered in 1910 and yet, available treatment options to manage the illness and improve the lives of patients with sickle cell disease, are very limited.
“The current standard of care for the treatment of sickle cell disease is hydroxyurea which can help to manage some of the acute complications associated with the condition and decrease the rate of pain crisis.
“Some patients may receive blood transfusions, however they are associated with clinical challenges such as iron overload, blood borne infections and problems with sourcing compatible blood.”
The study also found that almost half (46 per cent) of patients say that emergency room healthcare providers did not believe them about their symptoms, while 48 per cent said that they have been treated like a drug seeker in the emergency room.
On Monday, NHS Blood and Transplant said million more blood donors are needed, particularly those with the rarest blood types to help treat people with sickle cell which is the fastest growing genetic blood disorder in the UK and mainly affects Black people.
The findings were set out in the No One’s Listening report, which was jointly published in November by the All-Party Parliamentary Group (APPG) on Sickle Cell and Thalassaemia and the Sickle Cell Society, a national charity that supports and represents people affected by sickle cell blood disorders.
Patients shared accounts of being treated with disrespect, not being believed or listened to, and having their pain disregarded and not treated as a priority by healthcare professionals, even in cases where urgent medical care was needed.
The illness forms a group of inherited blood conditions where people living with the condition produce unusually shaped red blood cells, which do not live as long as healthy cells and can block blood vessels.
It is a serious and lifelong health condition which often causes severely painful episodes – referred to as ‘crises’ – and organ failure often requiring hospital admissions.
The government published its first ever Rare Diseases Action Plan geared towards improving coordination of care and access to specialist treatment for those who living with uncommon illnesses such as sickle cell.
source: The Independent