Health Check on Genetic Blood Disorders
Today the members of the All-Party Parliamentary Group (APPG) on Sickle Cell and Thalassaemia welcomed MPs, Lords, healthcare professionals, representatives of the Sickle Cell Society and UK Thalassaemia Society (UKTS) and patients to the House of Commons for a reception to celebrate their achievements so far in the fight to improve standards of care for patients with Sickle Cell Disease and Thalassaemia.
Sickle Cell Disease and Thalassaemia are both potentially fatal, inherited blood disorders, with Sickle Cell Disease most common amongst the Afro Caribbean and African community and Thalassaemia mainly affecting Asian, Southern Mediterranean and Middle Eastern populations.
Both diseases are caused by inherited genes that create defective red blood cells. Sickle Cell Disease sufferers have ‘sickle’-shaped blood cells which can build up to create blockages in small blood vessels, causing severe pain known as a sickle cell crisis.1 Individuals with Thalassaemia have low levels of haemoglobin in their blood and therefore do not receive enough oxygen, resulting in anaemia.2 People living with Thalassaemia require blood transfusions every 3-4 weeks.3
There are currently approximately 12,500 people with Sickle Cell Disease in the UK1 and the UKTS (The UK Thalassaemia Society) estimate there are around 900 - 1000 transfusion dependent people living with Thalassaemia in the UK.
Since its creation seven months ago to reduce health inequalities faced by Sickle Cell and Thalassaemia patients in the UK, the APPG has made significant progress in two key areas; prescription charges and evaluating the social and educational impacts of Sickle Cell Disease and Thalassaemia.
While the developments made in these areas demonstrates the progress the group has made in the past seven months there is still plenty of work for the APPG to do to improve the situation of patients with Sickle Cell Disease and Thalassaemia, and the group has already set out the next areas it wants to tackle.
Diane Abbott MP, Chair of the APPG on Sickle Cell and Thalassaemia, said “From the APPG’s work so far it is clear that the Department of Health and NHS professionals have made a genuine commitment to raise standards of care, and
services are improving however there is still much more that needs to be done to improve the situation of service users.
“This means implementing the Standards of Care, developing clinical networks and educating health professionals to better understand the conditions. The ultimate goal of the APPG is to ensure service users are receiving the very best care and support; and we will continue to work with stakeholders to achieve this.”
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References
1. NHS Choices Health A-Z. Last accessed on 11.12.08 from
http://www.nhs.uk/Conditions/Sickle-cell-anaemia/Pages/Introduction.aspx?url=Pages/what-is-it.aspx.
2. NHS Choices Health A-Z. Last accessed on 11.12.08 from http://www.nhs.uk/conditions/Thalassaemia/Pages/Introduction.aspx?url=Pages/What-is-it.aspx
3. Standards for the Clinical Care of Children and Adults with Thalassaemia in the UK 2008. Blood transfusions, page 12; antibiotics, page 41; Bone strengtheners and hormone therapy, page 57.
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