Diane continues to fight 'postcode lottery' for sickle cell and thalassaemia patients
Diane met with medical experts and sickle cell and thalassaemia patients in Westminster to discuss how a lack of quality care and education among health professionals is endangering lives.
Diane, who chairs the APPG for Sickle Cell and Thalassaemia, met with chair of the UK Forum on Haemoglobin disorders, Dr Phil Darbyshire, who presented his findings from an informal review of services commissioned by the Department of Health.
He confirmed there are still major disparities in the quality of care for patients in certain areas of the country.
His report concluded that coordinated clinical networks would increase consistency of care, and improved education of medical professionals on the conditions was needed.
Diane will help present these recommendations in a meeting with the Department of Health at the end of this month.
Testimonies were also heard from those who had lost family members because doctors and nurses were not aware of how to treat the disease, and concerns were raised about sickle cell being stereotyped as a ‘black disease’.
The meeting, held on March 2, was also attended by Dawn Butler, MP for Brent South, who helped form the APPG, and Conservative MP for Daventry, Tim Boswell.
Diane said:
“We heard some very moving stories about people who had died because the doctors treating them were unaware of how to deal with sickle cell and thalassaemia. It is shocking that a postcode lottery still exists for two such painful and debilitating diseases. We need to ensure that everyone has access to high quality local and specialist care through better organisation of networks, and it is essential that doctors and nurses get educated on sickle cell and thalassaemia as part and parcel of their training. It is unacceptable to put people’s health at risk because of lack of education.”
back ⇢